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Euthanasia is ‘a deliberate intervention undertaken with the express intention of ending a life so as to relieve intractable suffering’ (House of Lords, 1994; Walton, 1995). If it is performed at the dying person's request, it is voluntary; otherwise, it is non-voluntary. The terms ‘active’ and ‘passive’ may be misleading (Walton, 1995).
Physician-assisted suicide (PAS) is defined as the provision of help by a doctor to a competent patient who has formed a desire to end his or her life (Walton, 1995). In PAS, the physician provides the necessary knowledge and means (equipment, drugs) but the act is completed by the patient. It is similarly a deliberate act with the express intention of ending life and is not ethically or morally distinguishable from euthanasia.
The performance of assisted suicide by persons other than physicians, as occurs in Switzerland, is ethically and morally equivalent to PAS.
In Holland and Belgium, euthanasia is defined as being at the patient’s request, so cases of ‘ending of life without the patient’s explicit request’ have to be counted separately. It is ethically and morally no different to euthanasia.
Intensified treatment of pain and symptoms may be entirely clinically appropriate, the possibility of life-shortening being acknowledged, but not intended.
In contrast, intensified treatment of pain and symptoms performed with the intention of hastening death or ending life, is no different to euthanasia—these are deaths caused by the active intervention of the physician.
Withholding or withdrawing therapy may be entirely clinically appropriate, the possibility of life-shortening being acknowledged, but not intended.
In contrast, withholding or withdrawing therapy performed with the intention of hastening death or ending life, is no different to euthanasia—these are deaths caused by the active intervention of the physician.
Continuous sedation until death (CSD) for the management of severe and refractory symptoms in the last days or week of life may be entirely clinically appropriate therapy, the possibility of life-shortening being acknowledged, but not intended.
In contrast, CSD performed with the intention of hastening death or ending life is no different to euthanasia—these are deaths caused by the active intervention of the physician.
The ‘slippery slope’ is the gradual extension of assisted suicide to widening groups of patients after it is legally permitted for patients designated as terminally ill (Hendin, 1997a).
Henk Jochemsen (Director, Lindeboom Institute for Medical Ethics, the Netherlands): ‘The Dutch experience shows that once the termination of patients’ lives is practised and that practice wins official toleration or approval, the practice develops a dynamic of its own that resists effective control.’ (Jochemsen, 1994)
Herbert Hendin (Medical Director of Suicide Prevention Initiatives (SPI) and Professor of Psychiatry at New York Medical College): ‘Virtually every guideline set up by the Dutch—a voluntary, well considered, persistent request; intolerable suffering that cannot be relieved; consultation; and reporting of cases—has failed to protect patients or has been modified or violated.’ (Hendin, 2002)
José Pereira (Head of Palliative Care at the University of Ottawa): ‘Abuse of guidelines has occurred in every jurisdiction around the world where assisted dying has been legalized.’ (Pereira, 2011)
A range of euphemisms have been developed to avoid the terms euthanasia and PAS, particularly the stigma of the word ‘suicide’. These include ‘death with dignity’, ‘medical assistance in dying’, and ‘the peaceful alternative’. But these terms do not alter the nature of the act and, where possible, are avoided.
Daniel Callahan (co-founder and President Emeritus of The Hastings Center): ‘The advocates for physician-assisted suicide make use of a favourite method from the spin-tool box, that of obfuscation, defined in dictionaries as an effort to render something unclear, evasive, or confusing.’ (Callahan, 2008)
Robert Twycross (Reader, Oxford University): ‘[The pro lobby’s] attempt to ‘prettify’ the language of death by not using terms such as assisted suicide, euthanasia, and killing…’ (Twycross, 1990)
Wesley J. Smith (journalist and author of Forced Exit): ‘According to Compassion & Choices, when a terminally ill patient swallows an intentionally prescribed lethal overdose of barbiturates, it isn’t really suicide. Why? Because the word ‘suicide’ has negative connotations, and C&C wants people to feel positive about some self-killings.’ (Smith, 2013)
During the last 30 years, euthanasia and/or physician-assisted suicide (PAS) have been legalized in a number of countries. In chronological order, these are The Netherlands, the Northern Territory of Australia, Oregon (USA), Belgium, and Canada. Legal change was not required to allow assisted suicide in Switzerland.
‘The 1960s and 1970s were a watershed for Dutch society. From a conservative, tradition-bound country, the Netherlands transformed itself into a hotbed of social and cultural experimentation’ (Weyers, 2012). Amongst these were the ideals of patient autonomy and assisted dying (Angell, 1996). There are a number of good accounts of the saga of Dutch euthanasia (Hendin, 1997b; Hendin, 2002; Ten Have and Welie, 2005; Griffiths et al, 2008; Youngner and Kimsma, 2012; Keown, 2018).
In about 1990, formalized guidelines for the practice of euthanasia and physician-assisted suicide were issued (Walton, 1995). These were:
In 2002, the practices became legally regulated with the passage of the Termination of Life on Request and Assisted Suicide (Review Procedures) Act by the Dutch Parliament (see Parliament of the Netherlands).
End of Life Clinic
In 2012, the Dutch Association for Voluntary Euthanasia (NVVE) founded the End-of-Life Clinic or Levenseindekliniek (see Levenseindekliniek).
The current (2015) Regional Euthanasia Review Committees Code of Practice (see Regional Euthanasia Review Committees Code of Practice) states the physician must:
In the accompanying notes, it explains:
The Dutch have reported their practices each 5 years since 1990 (Table 1) (van der Maas et al, 1991; van der Maas et al, 1996; Onwuteaka-Philipsen et al, 2003; van der Heide et al, 2007; Onwuteaka-Philipsen et al, 2012b; van der Heide et al, 2017). The figures are also available from The Royal Dutch Medical Association (KNMG) website (see KNMG). Reports for 2016 and 2017 are available (see Regional Euthanasia Review Committees. Annual Reports).
Table 1. Frequency of Physician Assistance in Dying in the Netherlands - expressed as a percentage of all deaths
|Ending of life without specific request||0.8||0.7||0.7||0.4||0.2||0.3|
|Intensified alleviation of symptoms||18.8||19.1||20.1||24.7||36.4||35.8|
|Withholding/withdrawal of treatment||17.9||20.2||20.2||15.6||18.2||17.4|
|Continuous deep sedation||5.6||8.2||12.3||18.3|
From van der Heide et al, 2017
Ending of life without the patient’s explicit request
Intensified treatment of pain and symptoms
Withholding or withdrawing therapy
Continuous deep sedation until death (CSD)
Totals for 1990-2015
Estimating the magnitude of the Dutch experiment with euthanasia and PAS is an informative exercise.
Table 2. Estimate of total numbers of deaths 1990-2015
|Termination of life without explicit request||18,400|
|Intensified treatment of pain and symptoms||36,900|
|with the intention of hastening death|
|Withholding/withdrawing treatment with the intention of hastening death||285,000|
|Continuous sedation until death with the intention of hastening death||12,100|
The figures in Table 2 are calculated from the Dutch data. They are an approximation, given the limitations of the published data, but they suggest of the order of 450,000 people may have been involved in the Dutch experiment.
Be satisfied that it is requested
In the Netherlands, euthanasia is by definition requested, but
Be satisfied that the patient’s request is voluntary and free of coercion
Be satisfied that the patient’s request is well-considered
Be satisfied that the patient is suffering unbearably
Be satisfied that there were no reasonable (therapeutic) alternatives
Have consulted an independent physician, who must see the patient and provide a written opinion
Provide a report to the appropriate authority.
Euthanasia is performed only by medical doctors
In summary, the Dutch themselves have documented that they have broken every one of their own guidelines.
Support and Consultation on Euthanasia in the Netherlands (SCEN)
Euthanasia Review Committees
Henk ten Have (Professor of Medical Ethics at the University Medical Centre of Njmegen) and Jos Welie (Professor of Health Policy and Ethics, Creighton University, Omaha): ‘The important lesson to be learned from the Dutch experiment is the virtual impossibility of regulating the practice of euthanasia and PAS through public debate, laws and policies.’ (Ten Have and Welie, 2005)
Neil M Gorsuch (Associate Justice of the Supreme Court of the United States and author of The Future of Assisted Suicide): Does a regime dependent on self-reporting by physicians who have no interest in recording any case falling outside the guidelines adequately protect against lives taken erroneously, mistakenly, or as a result of abuse or coercion? How would we ever know? (Gorsuch, 2006)
The ‘slippery slope’ is the gradual extension of assisted suicide to widening groups of patients after it is legally permitted for patients designated as terminally ill (Hendin et al, 1997a).
Paul van der Maas (Department of Public Health, Erasmus University, Rotterdam): ‘…whether the acceptance of euthanasia or assisted suicide when it is specifically requested by a greatly suffering, terminally ill, competent patient is the first step on a slippery slope that will lead to an unintended and undesirable increase in the number of cases of less careful end-of-life decision making and to the gradual social acceptance of euthanasia performed for morally unacceptable reasons.’ (van der Maas et al, 1996).
The data for the period 1990 to 2015 show
The Dutch view
One of the better descriptions of the ‘slippery slope’, written in 2017, went as follows: ‘The core of this argument is that as soon as euthanasia is allowed at all, even if only under certain conditions, it will necessarily follow that euthanasia will in future be performed under less stringent conditions and will eventually degenerate into an absolutely abject form of euthanasia, such as killing people involuntarily.’
The alternative view
It is not possible to list all the publications attesting to the existence of a slippery slope, but I include several good reviews that I have seen (Hendin, 1997a; Jochemsen and Keown, 1999; Hendin, 2002; Keown, 2002; Ten Have and Welie, 2005; Randall and Downie, 2009; Keown, 2012 & 2013; Sprung et al, 2018; Keown, 2018).
Henk Jochemsen (Director, Lindeboom Institute for Medical Ethics, the Netherlands): ‘The Dutch experience shows that once the termination of patients’ lives is practised and that practice wins official toleration or approval, the practice develops a dynamic of its own that resists effective control.’ (Jochemsen, 1994)
Richard Fenigsen (Dutch cardiologist): ‘Dutch doctors who practice euthanasia are not on the slippery slope. From the very beginning, they have been at the bottom.’ (Fenigsen, 1997)
Karl Gunning (Director of the (anti-euthanasia) Dutch Physicians Union): ‘Once you start looking at killing as a means to solve problems, you’ll find more and more problems where killing may be the solution.’ (Koch, 1996)
Tom Koch (University of British Columbia, Vancouver, Canada): ‘Limited and closely regulated euthanasia for persons with a terminal illness [c. 1990] has been an expanding field that now [c.1995] includes patients with chronic conditions—for example ALS, Down’s syndrome, clinical depression, and anorexia nervosa—and those in the earlier or chronic phase of illnesses that may eventually prove terminal: Alzheimer disease, Parkinson’s disease, multiple sclerosis and AIDS.’ (Koch, 1996)
José Pereira (Head of the Division of Palliative Care, University of Ottawa): ‘In 30 years, the Netherlands has moved from euthanasia of people who are terminally ill, to euthanasia for those who are chronically Ill; from euthanasia for physical illness, to euthanasia for mental illness; from euthanasia for mental illness, to euthanasia for psychological distress or mental suffering—and now to euthanasia simply if a person is over the age of 70 and ‘tired of living’.’ (Pereira, 2011)
Margaret Somerville (Professor of Bioethics at University of Notre Dame in Australia) describes two types of slope: the “practical slippery slope”—which involves abuses of euthanasia once it is seen as legally acceptable, and the “logical slippery slope”—on which the people eligible for euthanasia and the circumstances in which it may be provided inevitably expand (Somerville, 2016).
Robert Twycross (Emeritus Reader, Oxford University): ‘Once the barrier of legislation is passed, medically assisted dying takes on a dynamic of its own and extends beyond the original intent, despite earlier explicit assurances that this would not happen.’ (Twycross, 2016)
(i). ‘Normalization’ of euthanasia
(ii) End of Life Clinic
(iii). Management of patients with psychiatric disorders or dementia
Psychiatric examination of those requesting assisted dying
Assisted dying for people with psychiatric disorders
Dr Boudewijn Chabot (psychiatrist and father figure of Dutch euthanasia): ‘The euthanasia practice is running amok because the legal requirements which doctors can reasonably apply in the context of physically ill people, are being declared equally applicable without limitation in the context of vulnerable patients with incurable brain diseases. In psychiatry, an essential limitation disappeared when the existence of a treatment relationship was no longer required. In the case of dementia, such a restriction disappeared by making the written advance request equivalent to an actual oral request. And lastly, it really went off the tracks when the review committee concealed that incapacitated people were surreptitiously killed.’ (Cook, 2017)
Victor Lamme (Professor of Cognitive Neuroscience at the University of Amsterdam): Referring to the treatment of the demented Hannie Goudriaan by the End of Life Clinic —‘the euthanasia doctor found in her pronunciation of the word ‘huppakee’ [hoppity] sufficient evidence for a clear and present desire to die.’ (Lamme, 2016)
Dr Boudewijn Chabot (psychiatrist and father figure of Dutch euthanasia): ‘In 2016, there were three reports of euthanasia of deep-demented persons who could not confirm their death wish. One of the three was identified as having been done without due care; her advance request could be interpreted in different ways. The execution was also done without due care; the doctor had first put a sedative in her coffee. When the patient was lying drowsily on her bed and was about to be given a high dose, she got up with fear in her eyes and had to be held down by family members. The doctor stated that she had continued the procedure very consciously.’ (Chabot, 2017)
(vi). Amyotrophic lateral sclerosis (ALS)
(vii). Lack of physical disease
(viii). Euthanasia using opioids
(ix). Amount of life lost
(x). Contradiction of autonomy
(xi). Voluntary refusal of food and fluids (VRFF)
(xiii). Existential suffering for patients en route to euthanasia
The Rights of the Terminally Ill (ROTI) Act was passed by the parliament of Australia’s Northern Territory in May 1995. This was the first time, anywhere in the world, that euthanasia and physician-assisted suicide were made legal (Ryan and Kaye, 1996a).
The Act came into effect in July 1996 and was repealed in March 1997 by the federal Australian Government.
The ROTI Act was for patients who were terminally ill, required consultation with specialists in both psychiatry and palliative care, and involved a 2-week waiting period.
During the 9 months of operation, seven patients sought euthanasia under the Act. Two died before it was enacted and one after it was repealed. Four patients died from euthanasia. They all had cancer. Pain was not a prominent symptom and fatigue, frailty, depression and social isolation contributed more to the suffering of the patients (Kissane et al, 1998).
(ii). The influence of media
Fran McInerney (Professor of Aged Care, Australian Catholic University, studied the representations of death, dying and medicine during the period 1995-1997): ‘The media's predilection for reporting dramatic and unusual death coincided with the [requested death] movement's construction of contemporary dying as horrific, intractable, and intolerable…The framing of requested death activists as heroes, and of requested death itself as a redeeming and transforming act for those seeking it, were preeminent in press portrayals.’ (McInerney, 2006)
The Oregon Death with Dignity Act (DWDA), legalizing physician-assisted suicide (PAS), was passed by a voter referendum in November 1994.
A 1995 survey of Oregon physicians showed that 60% favored legalization of PAS, but less than half (46%) said they might possibly participate (Lee et al, 1996).
A national survey reported 3% of physicians had participated in PAS (Meier et al, 1998).
A legal dissection of the Oregon and Washington State Acts concluded ‘[The Acts] are not about patient "choice" and "control." These laws instead enable people to pressure others to an early death or to even cause that death on an involuntary basis.’ (Dore, 2010)
The DWDA (see Oregon Death With Dignity Act) provides for a person who
The DWDA requires
Table 3. Number of PAS deaths in Oregon, 1998-2017
|Year||No. of Deaths|
That it was requested
That the request was voluntary, without coercion
That the patient requesting was competent
That the patient had a terminal illness
That the patient had a prognosis of 6 months or less
That there was discussion of alternatives, including palliative care
The consulting physician
The self-administration of medication
In summary, one has to agree with the accusation that the Oregon law provides inadequate safeguards and lacks any enforcement of safeguards (Ganzini, 2016).
The DWDA does not exclude patients with depression, just those in whom depression is impairing their judgement around desire for death (Ganzini, 2014).
Depression causing impaired competence
(ii). Lack of Physical Suffering
Daniel Sulmasy (Medical Ethicist, Kennedy Institute of Ethics and the Edmund D. Pellegrino Center for Clinical Bioethics, Georgetown University): ‘Rather than having severe physical or mental suffering, patients who follow through on PAS in the USA appear to have a distinct personality type, characterized by a need for control and a dismissive attitude towards other persons. They represent only about 0.5% of the US population, and the question arises whether the risks to the other 99.5% of the population justify acceding to the wishes of this small minority.’ (Sulmasy, 2017)
(iii). Amyotrophic Lateral Sclerosis (ALS)
(iv). Vulnerable Groups
(v). Complications of the Procedure
(vi). Relatives’ Mental Health
(vii). Interface between PAS and Palliative Care
(viii). Duration of the physician/patient relationship
(ix). Compassion and Choices Duplicity
(x). Oregon Health Plan Bastardry
(xi). Voluntary refusal of food and fluids (VRFF)
Dan Diaz (member of the Latino Leadership Council of Compassion and Choices) is quoted as saying that all PAD [physician-assisted dying] deaths are ‘gentle, peaceful’, whilst all non-PAD deaths are ‘struggling and in pain’ (Diaz, 2018).
Compassion & Choices Medical Aid in Dying Fact Sheet (December 2016):
‘Medical aid in dying is a safe and trusted medical practice because the eligibility requirements ensure that only mentally capable, terminally ill adults with a prognosis of six months or less who want the choice of a peaceful death are able to request and obtain aid-in-dying medication…Almost two decades of rigorously observed and documented experience in Oregon shows us the law has worked as intended, with none of the problems opponents had predicted.’ (see Compassion and Choices)
Daniel Callahan (co-founder and President Emeritus of The Hastings Center): He described the safeguards in Oregon as ‘regulatory obfuscation. They look good, sound good, feel good, but have nothing behind them.’ (Callahan, 2008)
John Keown (Professor in the Kennedy Institute of Ethics at Georgetown University): ‘The next steps in Oregon…seem predictable. If autonomy and beneficence justify ‘terminally ill ’ patients obtaining prescriptions for lethal drugs then they justify non-terminally ill patients obtaining them, not least as they may have many years and not just a predicted six months of illness to endure. It is only a matter of time until the requirement of a ‘ terminal illness ’ is removed by legislation or struck down by a court as unjustifiably discriminatory…Moreover, if autonomy and beneficence justify lethal prescriptions they also justify lethal injections, especially for those too disabled to lift or swallow a lethal cocktail. It is, again, only a matter of time before a right to a lethal injection is upheld, either by legislation or by a court holding that their prohibition discriminates against the disabled…’ (Keown, 2018)
Life End Information Foundation (LEIF)
Federal Control and Evaluation Commission on Euthanasia (FCECE)
I was unable to find any governmental document listing the legal requirements in English. The following is largely taken from Griffiths (Griffiths et al, 2008).
If the patient expected to die in near future
If the patient is not expected to die in the near future
In addition to the requirements listed above—
The 2014 law allowing euthanasia for children (Raus, 2016)
Table 4. Frequency of reported cases of euthanasia - whole of Belgium
|Percentage of all deaths||0.2||0.5||1.7|
From Dierickx et al, 2016
Table 5. Frequency of physician assistance in dying - Flanders
|% of all deaths|
|Ending of life without explicit request||1.5||1.8||1.7|
|Intensified alleviation of symptoms||22||26.7||24.2|
|Withholding/withdrawing of treatment||14.6||17.4||17.2|
|Continuous deep sedation until death||8.2||14.5||12|
From Bilsen et al, 2009 and Chambaere et al 2015
Physician-assisted suicide (PAS)
Ending of life without the patient’s explicit request
Intensified treatment of pain and symptoms
Withholding or withdrawing therapy
Continuous sedation until death (CSD)
That the procedure is requested
That the request is in writing
That the person is competent and conscious
That the patient has a serious and incurable disorder causing persistent and unbearable suffering
There is discussion of treatment possibilities, including palliative care
There is an independent second opinion
Provide a report to the appropriate authority.
The euthanasia is performed only by medical doctors
In summary, the Belgians themselves have documented that they have broken every one of their own guidelines (Jones et al, 2017; Keown, 2018).
Life End Information Foundation (LEIF)
The Federal Control and Evaluation Commission on Euthanasia (FCECE)
Etienne Montero (Faculty of Law, University of Namur, Belgium): ‘The indications for euthanasia are constantly multiplying, despite the legislators’ initial statements and intentions.’ (Montero, 2017)
(i). The ‘normalization’ of euthanasia
(ii). Euthanasia for children
(iii). Euthanasia for psychiatric patients and those with dementia
(iv). Continuous sedation until death (CSD)
(v). Euthanasia and palliative care
(vi). Attempts to prohibit conscientious objection
(vii). Euthanasia and Organ Donation.
(viii). Definition of euthanasia
(ix). ICU patients
Wesley J. Smith (journalist and author of Forced Exit): ‘Euthanasia in Belgium has gone completely out of control—including as just two examples—doctors killing the mentally ill and conjoining the death procedure with voluntary organ harvesting, as well as joint euthanasia deaths of elderly couples who ask to die for fear of future widowhood.’ (Smith, 2018)
Willem Lemmens (Department of Philosophy, University of Antwerp): ‘[The] fundamentally problematic feature of the Belgian euthanasia social experiment…[is] a too exclusive and uncritical propagation of the ethical principle of respect for autonomy and self-determination.’ (Lemmens, 2017)
Etienne Montero (Faculty of Law, University of Namur, Belgium): ‘Since euthanasia was legalized in Belgium in 2002, experience demonstrates that it is an illusion to believe that euthanasia can be permitted as a narrowly circumscribed, well-defined exceptional practice to which ‘strict conditions’ apply and which is under rigorous control. Once euthanasia is allowed, the limiting conditions established under the law fall away, one after the other, and it appears practically impossible to maintain a strict interpretation of the statutory conditions and to prevent the extension of the law…Indications for euthanasia are constantly multiplying, despite the legislators’ initial statements and intentions.’ (Montero, 2017)
Raphael Cohen-Almagor (School of Law and Politics, University of Hull): ‘The scope of tolerance toward the practice is enlarged so that yesterday’s red light becomes obsolete today. As the restrictions are removed, practitioners and law-makers are already debating the next step and the additional groups to be included in the more liberal euthanasia policy as if the restrictive logic behind the Euthanasia Act were no longer valid. This is quite astonishing because human lives are at stake.’ (Cohen-Almagor, 2017)
Willem Lemmens (Department of Philosophy, University of Antwerp): asks why ‘none of the pro-euthanasia experts ever seems to consider the possibility that there might be something wrong with a law that creates such emotional and existential havoc.’ (Lemmens, 2017)
Benoit Beuselinck (Oncologist, University Hospitals, Leuven, Belgium): ‘…the legalization of euthanasia has put a burden on doctors, families, palliative care services and has put in danger the patient’s own life. Together with several colleagues, we believe that the law on euthanasia has created more problems and difficulties than solutions…It is the core business of doctors to offer genuine palliative care and alleviate the physical suffering of a patient while taking care for the mental, social and spiritual aspects of his or her suffering.’ (Beuselinck, 2017)
In February 2015, the Supreme Court of Canada’s decision in the Carter v Canada case overturned the ban on doctor-assisted suicide (Chan and Somerville, 2016). The decision has been questioned on judicial grounds (Keown, 2018).
In June 2016, federal legislation was enacted to allow assisted dying, referred to in Canada as medical assistance in dying (MAiD) (see Government of Canada).
Availability of palliative care
The law provides for a person who
The physician or nurse practitioner must
Table 6. Number of cases of euthanasia and assisted suicide: Canada 2016-17
|Number of deaths||803||2704|
From Canadian Government Statistics (see Government of Canada)
That the patient has a grievous and irremediable medical condition
That ‘their natural death has become reasonably foreseeable’
(i). Palliative care
(ii). Moves to reduce safeguards
(iii). Calls for inclusion expansion
(iv). Prohibition of conscientious objection
(v). Psychiatric issues
Difficulties with psychiatric disorders and assisted dying in Canada are emphasized by the work of Harvey Chochinov and his colleagues.
(vii). Organ Donation
The final words rest with seven Canadian physicians who provide troubling insights into what is really happening (Leiva et al, 2018).
The Right-to-Die Organizations
Under Swiss law
Guidelines of the right-to-die organizations
The frequency of assisted suicide in the German-speaking part of Switzerland in 2001 and 2013 are shown in Table 7 (van der Heide et al, 2003; Bosshard et al, 2016).
Table 7. Physician Decisions Regarding Dying in German-speaking Switzerland
|% of all deaths|
|Ending of life without explicit request||0.5||0.8|
|Intensified alleviation of symptoms||22.3||21.3|
|Withholding/withdrawal of treatment||28.7||35.2|
|Continuous deep sedation||4.7||17.5|
From van der Heide et al, 2003 and Bosshard et al, 2016
(i). Disregarding psychosocial matters
(ii). IV & PEG infusions for assisted suicide
(iv). Psychological morbidity for relatives
(v). Palliative Care
(vi). Organ Donation
(vii). Problems related to suicide tourism
The arguments for and against euthanasia and physician-assisted suicide have been summarized (Biller-Andorno, 2013; Boudreau and Somerville, 2013; Byock, 2016; Keown, 2018; Sulmasy et al, 2018).
Many medical and nursing organizations have published position statements on euthanasia and physician-assisted suicide (see IAHPC). Recently, a number have adopted a position of neutrality, which is seen by proponents and the public and politicians as supportive of assisted dying (Sulmasy et al, 2018). ‘If a medical association declares neutrality on this important issue, it squanders the precious role such associations have in providing guidance to the public and political sphere.’ (Bridge et al, 2019)
Protagonists will tell you the main reasons why assisted dying must be legalized are—
To which they may add—
But they don’t mention—
Protagonists will tell you the main reasons why assisted dying must be legalized are—
Ronald Dworkin (Professor of Law and Philosophy, New York University): ‘Making someone die in a way that others approve, but he believes a horrifying contradiction of his life, is a devastating, odious form of tyranny.’ (Dworkin, 1993)
John Harris (Professor of Bioethics and Applied Philosophy, University of Manchester): ‘Euthanasia should be permitted…simply because to deny a person control of what, on any analysis, must be one of the most important decisions of life, is a form of tyranny, which like all acts of tyranny is an ultimate denial of respect for persons.’ (Harris, 1995)
Marcia Angell (former Editor, NEJM): ‘The most important ethical principle in medicine is respect for the patient’s autonomy and when this principle conflicts with others, it should almost always take precedence.’ (Angell, 1997)
Richard Smith (former Editor, BMJ): ‘…the three themes that emerged…were control, autonomy, and independence.’ (Smith, 2000)
Compassion and Choices: My Life. My Death. My choice.
1.1 But…autonomy is not absolute.
Edmund Pellegrino (Director of the Kennedy Institute of Ethics at Georgetown University): ‘In the last 25 years, patient autonomy has displaced physician beneficence as a dominant principle in medical ethics. This has enhanced the moral right of patients to refuse unwanted treatment and to participate in clinical decisions. But now, in some cases, patient autonomy is being absolutized. The right to refuse is becoming a right to demand treatment.’ (Pellegrino, 1994)
Charles Foster (London barrister who teaches medical law and ethics at the University of Oxford): ‘Autonomy is a vital principle in medical law and ethics, but there is a dangerous presumption that it should have the only vote, or at least the casting vote.’ (Foster, 2009)
Michael Kekewich (Clinical Ethicist, Ottawa) ‘The principle of respect for autonomy has for many patients evolved into a positive right to request treatments and expect accommodation’…which he describes as dysfunctional (Kekewich, 2014).
1.2 But…aren’t ‘autonomous decisions’ subject to outside influences?
Robert Twycross (Emeritus Reader, Oxford University): ‘Every person asking for assisted death brings with them the attitudes and feelings of their family, their socioeconomic problems, and whether or not they feel they are a burden.’ (Twycross, 1996)
Shimon Glick (Jakobovits Center for Jewish Medical Ethics, Ben-Gurion University Faculty of Health Sciences, Beer-Sheva, Israel): ‘Can a decision for suicide or euthanasia be truly autonomous? Can a vulnerable, sick, suffering person be truly capable of a truly autonomous decision in an environment where the media, the medical community, the bioethicists, the caregivers, and the family overtly and covertly convey the message that the time has come to die.’ (Glick, 1997)
1.3 But…can’t ‘autonomous decisions’ be influenced by psychological factors?
Other psychological matters
Brian Kelly and Francis Varghese (Professor of Psychiatry at the University of Newcastle, Australia and the University of Queensland, respectively): ‘The reasons for a patient seeking suicide as a treatment are complex and go beyond questions of a patient's right to die. The request for euthanasia needs to be seen in the context of the patient's circumstances, including relationships with and attitudes of carers and health professionals, along with patterns of psychiatric disorder and psychiatric symptoms in the medically ill (Kelly and Varghese, 1996).
1.4 But…is autonomy used to justify progressive widening of the indications?
Etienne Montero (Faculty of Law, University of Namur, Belgium): ‘In keeping with the philosophy of autonomy, it seems logical and even natural that, sooner or later, the ‘strict’ legal conditions weigh less than the firm and specific wishes of the patient.’ (Montero, 2017)
Michael Cook (editor of BioEdge and founder of MercatorNet): In Holland, the law requires ‘(1) the request must be voluntary and deliberate; (2) there must be unbearable suffering with no hope of improvement; and (3) there must be no reasonable alternative to euthanasia…[But] patients define what is unbearable and they define what is a reasonable alternative…Autonomy has trumped medicine…’ (Cook, 2017)
1.5 But…are there not apparent contradictions between autonomy and assisted dying?
John Keown (Professor at the Kennedy Institute of Ethics at Georgetown University, Washington DC.): ‘[The argument for assisted dying] that it respects individual autonomy, is too often advanced as if it were an obvious conclusion rather than a controversial proposition. The counter-argument is that many requests for [assisted dying] are not truly autonomous but result from depression or inadequate palliative care.’ (Keown, 2002 & 2018)
Kathryn Mannix (Palliative Care Physician, Newcastle, UK): ‘…to legalize assistance with dying arises from the argument that to deny assistance is to deny the autonomy, or right to choose, of an individual. Proponents describe this denial as dehumanizing, as though exercise of autonomy alone is the mark of human personhood. The humanizing aspect of choice is its potential for nobility: as humans, we can reflect on our being and on the consequences of our choices. The right to choose to die with medical assistance, when placed in this context, must be weighed against the nobility of relinquishing this right if its commission would damage other, possibly more vulnerable, members of our society.’(Mannix, 2005)
Charles Foster (London barrister who teaches medical law and ethics at the University of Oxford): ‘Autonomy grew up as a street fighter, and was bloodied in some genuinely noble battles against medical paternalism. But like so many rulers with this sort of pedigree, it has quickly forgotten its democratic roots, and grown fat and brutal in power.’ (Foster, 2009)
OJ Hartling (The Danish Council of Ethics, Copenhagen): ‘The illusion of autonomy—the choice is meant to be free, but the patient is not free to make the choice; a choice that seeks to alleviate suffering and improve life by annihilating it is irrational; autonomy as to one's own death is hardly exercised freely. Even an otherwise competent person may not be competent in deciding on his own death on account of despair, hopelessness, fear or maybe a feeling of being weak, superfluous and unwanted.’ (Hartling, 2006)
Robert George (Bioethicist, University College, London) et al: ‘Therapeutic killing without explicit request, or of those lacking capacity, is the ultimate violation of autonomy.’ (George et al, 2005)
Numerous others have made a case for the overriding importance of patient autonomy, including Margaret Battin (Professor of Philosophy, University of Utah) (Battin, 2005), Timothy Quill (palliative care physician) (Quill and Battin, 2004; Quill and Miller, 2014), Baroness Warnock (Philosopher) (Warnock and Macdonald, 2008), Guenter Lewy (Emeritus Professor of Political Science, University of Massachusetts) (Lewy, 2011), L. W. Sumner (Emeritus Professor of Philosophy, University of Toronto) (Sumner, 2011), and Rodney Syme (retired urologist, former president of Dying With Dignity Victoria) (Syme, 2008 & 2016).
Daniel Sulmasy (Medical Ethicist, Kennedy Institute of Ethics and the Edmund D. Pellegrino Center for Clinical Bioethics, Georgetown University): ‘Rather than having severe physical or mental suffering, patients who follow through on PAS in the USA appear to have a distinct personality type, characterized by a need for control and a dismissive attitude towards other persons. They represent only about 0.5% of the US population, and the question arises whether the risks to the other 99.5% of the population justify acceding to the wishes of this small minority.’ (Sulmasy, 2017)
Fran McInerney (Professor of Aged Care, Australian Catholic University): ‘The framing of requested death activists as heroes, and of requested death itself as a redeeming and transforming act for those seeking it, were preeminent in press portrayals.’ (McInerny, 2006)
The polls are asking about legalization
The Mackay Report (House of Lords): ‘There was general agreement among our witnesses that the number of people who might be regarded as serious about ending their lives, who are not psychiatrically ill and who are unlikely to be deflected from their purpose is very small indeed and comprises to a large extent terminally ill people who have strong personalities and a history of being in control of their lives and whose suffering derives more from the fact of their terminal illness and from the loss of control which this involves than from the symptoms of their disease.’ (House of Lords, 2005)
It depends on the population surveyed
The responses are about legalization, not performance
5.1 The Netherlands
6.1 But…is it really being widely practiced?
6.2 But…would bringing it out in the open lead to more effective regulation?
To which they may add—
Robert Twycross (Emeritus Reader, Oxford University): ‘Once the barrier of legislation is passed, medically assisted dying takes on a dynamic of its own and extends beyond the original intent, despite earlier explicit assurances that this would not happen.’ (Twycross, 2016)
Peter Singer (Professor of Medicine and bioethicist, University of Toronto): ‘Of all the arguments against voluntary euthanasia, the most influential is the slippery slope: once we allow doctors to kill patients, we will not be able to limit the killing to those who want to die.’
Wesley Smith (journalist and author of Forced Exit): ‘It took the Dutch almost 30 years for their medical practices to fall to the point that Dutch doctors are able to engage in the kind of euthanasia activities that got some German doctors hanged after Nuremberg. For those who object to this assertion by claiming that German doctors killed disabled babies during World War II without consent of parents, so too do many Dutch doctors: Approximately 21% of the infant euthanasia deaths occurred without request or consent of parents.’ (Smith 2004)
Daniel Sulmasy (Medical Ethicist, Kennedy Institute of Ethics and the Edmund D. Pellegrino Center for Clinical Bioethics, Georgetown University): There is a slippery slope, the final end being the legalizing of euthanasia for anyone for any reason or no reason (Sulmasy, 2014).
The Walton Committee (House of Lords): ‘We do not think it possible to set secure limits on voluntary euthanasia…We are also concerned that vulnerable people – the elderly, lonely, sick, or distressed – would feel pressure, whether real or imagined, to request early death.’ (House of Lords, 1994)
The New York State Task Force on Life and the Law (Some members of this committee were supporters of euthanasia and assisted dying, but they ended up with a unanimous recommendation not to legalize assisted dying): ‘…legalizing assisted suicide and euthanasia would be profoundly dangerous for many individuals who are ill and vulnerable. The risks would be most severe for those who are elderly, socially disadvantaged, or without access to good medical care.’ (New York Task Force, 1994)
Patricia Mann (Department of Philosophy, Hofstra University): ‘There will be social expectations for individuals to choose PAS as soon as their capabilities decline to a point where they become dependent upon others in an expensive inconvenient way.’
Baroness Onora O’Neill (Professor Emeritus of Philosophy): ‘Legalizing assisted dying places a huge burden on the vulnerable…[it] amounts to adopting a principle of indifference towards [the vulnerable], in order to allow a few independent folk to get others to kill them on demand…Laws are written for all of us in all situations.’ (O’Neill, 2006)
John Keown (Professor of Ethics in the Kennedy Institute of Ethics at Georgetown University): ‘The ‘right to die’ would surely in time become more of a ‘duty to die’, not least given the burgeoning costs of caring for a growing, elderly and demented population …decriminalization [of assisted dying] could easily by itself signal to vulnerable groups, directly or indirectly, not only that they may seek an earlier death, but that they should.’ (Keown, 2012)
Richard Fenigsen (Dutch cardiologist): ‘The fundamental question about euthanasia: Whether it is a libertarian movement for human freedom and the right of choice, or an aggressive drive to exterminate the weak, the old, and the different, this question can now be answered. It is both.’
9.1 But…what about intention?
9.2 But…the cause of death is different.
An individual doctor’s conscientious objection, for whatever reason, should be respected and this includes referral to another practitioner who performs euthanasia and physician-assisted suicide. Some doctors do not believe assisted dying is morally right, whether for religious or other reasons.
Els Borst (the doctor/Health Minister who guided the euthanasia legislation through the Dutch parliament) admitted in 2009 that the government did not give enough attention to palliative care and support for the dying, that the legalization came ‘far too early’, and that a decline in the quality of care for the terminally ill had followed (Craine, 2009; Keown, 2012).
But they don’t mention—
Victor Lamme (Professor of Cognitive Neuroscience, University of Amsterdam): ‘The "normalisation" of euthanasia means that it is seen as an acceptable solution to the problem of the elderly who are felt to have outstayed their welcome, or who feel they are a burden to their families.’ (Lamme, 2016)
Quality palliative care will reduce the wish for hastened death.
Marshall Perron (former Chief Minister of the Australian Northern Territory and the politician responsible for the introduction of the assisted dying legislation): ‘I understand severe depression to be fairly readily recognizable. You don’t have to have a huge string of qualifications.’ (Perron, 1996)
Killing is inherently wrong; there is an inherent value in human life.
Killing is contrary to the ethos of medicine
Robert Twycross (Emeritus Reader, University of Oxford): ‘I am bound by the cardinal medical ethical principle that I must achieve my treatment goal with the least risk to the patient’s life.’ (Twycross, 1990)
Daniel Sulmasy (Medical Ethicist, Kennedy Institute of Ethics and the Edmund D. Pellegrino Center for Clinical Bioethics, Georgetown University): ‘The traditional Hippocratic ban on physicians killing patients makes sense from the perspective of the psychodynamics of the patient-physician relationship. The preconditions of trust that constitute the safety of the interpersonal space in which the patient can expose his or her vulnerability to the physician in order to be healed would seem to include, at a minimum, that the physician pledge to the patient, ‘I will not kill you.’’ (Sulmasy, 2017)
Robert Twycross (Emeritus Reader, University of Oxford): ‘A gap…between the philosophical sophisticates and those who are involved daily in the care of the dying. When viewed from the academic (or editorial) ivory tower the arguments in favour of legalized euthanasia may well seem logical and powerful. At the bedside, however, the arguments against are overwhelming.’ (Twycross, 1995)
The practice of assisted dying has adverse consequences for the patient-doctor relationship in terms of physician integrity and patient trust.
Kenneth Stevens (Emeritus Professor of Radiation Oncology, Oregon Health and Science University, Portland): ‘The physician is centrally involved in PAS and euthanasia, and the emotional and psychological effects on the participating physician can be substantial. The shift away from the fundamental values of medicine to heal and promote human wholeness can have significant effects on many participating physicians. Doctors describe being profoundly adversely affected, being shocked by the suddenness of the death, being caught up in the patient’s drive for assisted suicide, having a sense of powerlessness, and feeling isolated. There is evidence of pressure on and intimidation of doctors by some patients to assist in suicide. The effect of countertransference in the doctor-patient relationship may influence physician involvement in PAS and euthanasia.’ (Stevens, 2006)
Palliative care services are being forced to perform euthanasia and physician-assisted dying
Funding of palliative care services is threatened (Leiva et al, 2018)
The Belgian model of palliative care is advocated
Palliative care staff and services may be challenged by the introduction of assisted dying programs.
Considerable difficulties have been reported establishing assisted dying programs, including the relationship with the palliative care services in the same institutions (Loggers et al, 2013; Campbell and Black, 2014; Li et al, 2017; Pereira et al, 2008).
Offensive remarks are made
Rodney Syme (retired urologist, former president of Dying With Dignity Victoria):
‘There is scant evidence to support the effectiveness of specialised palliative care for patients with terminal illness in terms of quality of life, patient or care giver satisfaction, or economic cost.’ (Syme, 2016)
He describes the palliative care process as intrusive for the patient and family, and palliative care professionals with ‘the mind-set’ (i.e. not agreeing with his views) as hypocrites (Syme, 2008).
Philip Nitschke (founder and director Exit International):
He told author Nikki Gemmell that her mother’s physician-assisted suicide (which he helped arrange) amounted to ‘empowerment’, and that anyone opposing his views was either not mature or was suffering ‘religious claptrap’ (Gemmel, 2017; see Nitscke).
Andrew Denton (former TV personality and comedian):
‘Palliative care doctors are poorly informed, unreflective and opposed to euthanasia for out-dated, ideological/religious reasons.’ (Denton (2))
He accused Catholic palliative care doctors of delaying palliative symptom relief because they believed in the redemptive benefits of suffering. ‘If a doctor has this core religious belief then there’s a limit to how much and how quickly they’re going to help you.’ (Denton (1))
Reducing health care expenditure is a priority in most developed countries. Which brings up the inevitable question of how much money might be saved (by the insurance organizations, the state, and the families of the dying) by the introduction of assisted dying?
The State and the health insurance companies stand to make major savings.
Derek Humphrey (co-founder of the Hemlock Society, the Final Exit Network, and Compassion and Choices): ‘In the final analysis, economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.’ (Humphrey and Clement, 2000)
The way we manage the dying leaves much to be desired…
The doctor comfortably accompanying his patient, providing appropriate physical and emotional comfort…the patient informed, and content that they will be not abandoned.
There is much that needs to be done…
But is euthanasia and physician-assisted suicide the answer?
Much change is needed, but not the introduction of medical assistance in dying.
Ira Byock (palliative care physician, author and Professor of Medicine at the Geisel School of Medicine, Dartmouth, New Hampshire):
‘From its very inception, the profession of medicine has formally prohibited its members from using their special knowledge to cause death or harm to others. This was – and is – a necessary protection so that the power of medicine is not used against vulnerable people.’
‘Physician-assisted suicide weakens the moral grounding and structural integrity of the medical profession in service to society. This damage is particularly acute for the specialty of hospice and palliative medicine in sowing confusion among the public and in diverting the discipline’s research and policy foci away from alleviating persistent suffering.’
‘In these adversarial arenas, the fight over physician-assisted suicide makes it appear as if a cultural chasm divides Americans. In fact, the chasm is a mirage, an artefact…Our differences are dwarfed by the common high ground of values, shared wishes for care…It is on this common ground that we can build better systems of medical care and social support and realize our full social potential. (Byock, 2012)
René Girard (French historian and social philosopher, 1923-2015): ‘The experience of death is going to get more and more painful, contrary to what many people believe. The forthcoming euthanasia will make it more rather than less
painful because it will put the emphasis on personal decision in a way which was blissfully alien to the whole problem of dying in former times. It will make death even more subjectively intolerable, for people will feel responsible for
their own deaths and morally obligated to rid their relatives of their unwanted presence. Euthanasia will further intensify all the problems its advocates think it will solve.’
Barbara Karnes (American nurse, educator and author of A Time to Live): ‘Dying a gradual death makes us the fortunate ones. We have been given the opportunity to say I love you, to amend the mistakes, to ride the rollercoaster, to say good-bye.’
Elisabeth Kübler-Ross (Swiss-born American psychiatrist, 1926-2004): ‘Lots of my dying patients say they grow in bounds and leaps, and finish all the unfinished business. But assisting a suicide is cheating them of these lessons, like taking a student out of school before final exams. That's not love, it's projecting your own unfinished business.’
Michigan's Religious Leaders Forum (a group of Christian, Jewish and Muslim leaders): ‘Those who promote this last, fatal escape as a "right" should remember that such a "right" may quickly become an expectation and, finally, even a "duty" to die.’
Dame Cicely Saunders (nurse, almoner, palliative care physician and founder of the modern hospice movement, 1918-2005):
You don’t have to kill the patient to kill the pain. There is no such thing as intractable pain, only intractable doctors.
You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.
I remain committed to helping people find meaning in the end of life and not to helping them to a hastened death. (Saunders, 2002)
Here are my reviews of books dealing with euthanasia and assisted-suicide.
|Neuberger||DYING WELL. A Guide to Enabling a Good Death|
|Foley & Hendin||THE CASE AGAINST ASSISTED SUICIDE.|
|Keown||EUTHANASIA, ETHICS AND PUBLIC POLICY.|
|Neuberger||DYING WELL. A Guide to Enabling a Good Death 2e|
|Quill & Battin||PHYSICIAN-ASSISTED DYING.|
|Battin||ENDING LIFE: Ethics and the Way We Die|
|Blank & Merrick||END-OF-LIFE DECISION MAKING.|
|Ten Have & Welie||DEATH AND POWER.|
|Colby||UNPLUGGED. Reclaiming Our Right To Die in America|
|Gorsuch||THE FUTURE OF ASSISTED SUICIDE AND EUTHANASIA|
|Kelly||MEDICAL CARE AT THE END OF LIFE.|
|Horne||DYING. A Memoir|
|Shannon & Faso||LET THEM GO FREE. A Guide to Withdrawing Life Support|
|Wanzer & Glenmullen||TO DIE WELL. Your right to comfort, calm, and choice|
|Lewis||MEDICINE AND CARE OF THE DYING|
|Griffiths et al||EUTHANASIA AND LAW IN EUROPE|
|Hastings Center||CHOOSING DEATH.|
|Syme||A GOOD DEATH. An Argument for Voluntary Euthanasia|
|Warnock & Macdonald||EASEFUL DEATH. Is There A Case For Assisted Dying?|
|Foster||CHOOSING LIFE, CHOOSING DEATH.|
|Jeffrey||AGAINST PHYSICIAN ASSISTED SUICIDE.|
|Randall & Downie||END OF LIFE CHOICES. Consensus and Controversy|
|Goodman||THE CASE OF TERRI SCHIAVO.|
|Qualls & Kasl-Godley||END-OF-LIFE ISSUES, GRIEF, AND BEREAVEMENT.|
|Goldberg||DEATH WITH DIGNITY.|
|Orfali||DEATH WITH DIGNITY.|
|Lewy||ASSISTED DEATH IN EUROPE AND AMERICA.|
|Byock||THE BEST CARE POSSIBLE. A Physician’s Quest to Transform|
|Jackson & Keown||DEBATING EUTHANASIA|
|Youngner & Kimsma||PHYSICIAN-ASSISTED DEATH IN PERSPECTIVE.|
|Berlinger et al||THE HASTINGS CENTER GUIDELINES FOR DECISIONS ON CARE NEAR THE END OF LIFE 2e|
|Hagger & Woods||A GOOD DEATH? Law and Ethics in Practice|
|Johnstone||ALZHEIMER’S DISEASE AND THE POLITICS OF EUTHANASIA|
|Keown||THE LAW AND ETHICS OF MEDICINE.|
|Gawande||BEING MORTAL. Medicine and What Matters in the End|
|IOM||DYING IN AMERICA.|
|Quill & Miller||PALLIATIVE CARE AND ETHICS|
|Sumner||ASSISTED DEATH. A Study in Ethics and Law|
|Renz||DYING. A Transition|
|Rehmann-Sutter et al||THE PATIENT’S WISH TO DIE.|
|Taboada||SEDATION AT THE END-OF-LIFE.|
|Dugdale||DYING IN THE TWENTY-FIRST CENTURY.|
|Taylor||DYING. A Memoir|
|Dwyer||CONVERSATIONS ON DYING.|
|Stercks et al||CONTINUOUS SEDATION AT THE END OF LIFE.|
|Youngner & Arnold||THE OXFORD HANDBOOK OF ETHICS AT THE END OF LIFE|
|Syme||TIME TO DIE|
|Roscoe & Schenck||COMMUNICATION AND BIOETHICS AT THE END OF LIFE.|
|Jones et al||EUTHANASIA AND ASSISTED SUICIDE. Lessons from Belgium|
|Mannix||WITH THE END IN MIND.|
|English et al||PHYSICIAN-ASSISTED DEATH: SCANNING THE LANDSCAPE.|
|Macauley||ETHICS IN PALLIATIVE CARE|
|Keown||EUTHANASIA, ETHICS AND PUBLIC POLICY 2e.|
Guide to Enabling a Good Death
Radcliffe Medical Press, 1999
Brilliant! In 171 clearly-written pages, I found out about the origins of the attitudes to death and bereavement with which I grew up; I learned about the teachings and customs regarding death of the world’s great religions and how palliative care professionals can best deal with them; I was treated to an erudite discussion on the meaning of a “good death”, covering everything from common sense to euthanasia; and how we, whether we are health care professionals, family members, clergy, or friends, can help people achieve it; and finally, a description of our society’s approach to grief and bereavement that does not shy away from pointing out what is wrong and why.
Anyone who works in hospice and palliative care should read this book. And, as it is written both for health care professionals and the general public, it should be available to be loaned out to people caring for loved ones through a terminal illness.
Rabbi Julia Neuberger has served as the Rabbi of a South London Liberal Synagogue for twelve years, is Chief Executive of the King’s Fund, and is a Vice-President of the Royal College of Nursing and the National Carers Association.
Roger Woodruff (May 2004)
THE CASE AGAINST ASSISTED SUICIDE
For the Right to End-of-Life Care
Kathleen Foley and Herbert Hendin
Johns Hopkins University Press, 2002
This book cogently sets out the medical, ethical, philosophical and legal arguments against the legalization of physician-assisted suicide and, just as importantly, describes how palliative care needs to be developed so that we can uphold the right of the terminally ill not to suffer. The contributors are distinguished experts in medical ethics, palliative care, and law.
The book is divided into four sections. In the first - Autonomy, Compassion and Rational Suicide - Kass, Pellegrino, Callahan and Kamisar provide ethical, philosophical and legal arguments that neither of the major justifications for assisted suicide, autonomy and compassion, provides an adequate basis for legalizing the practice. And, in the words of the ethicist Sissela Bok, if you do legalize it “no country has yet worked out the hardest questions of how to help those patients who desire to die, without endangering others who do not”.
The second section - Practice versus Theory - includes chapters on the practice of assisted suicide and euthanasia in the Netherlands, Oregon and the Australian Northern Territory. Hendin’s extensive knowledge and insight is evident in his review of the Dutch practices and includes the remarkable statement by one of the authors of the 1995 Dutch report “that the person responsible for avoiding involuntary termination of life is the patient”. Ben Zylicz describes working in palliative care in the Netherlands, where its development has been severely hampered by the easy availability of euthanasia; one feels a tug as he describes being prevented from seeing terminally ill patients with treatable symptoms, and patients for whom palliative care might offer so much being taken away to hospital for euthanasia. Foley and Hendin review the Oregon experiment and catalogue the lack of legal safeguards and the paucity of information that has been made available. The Northern Territory deaths are described and discussed by David Kissane.
The third section - Reason to be Concerned - discusses assisted suicide and palliative care in relation to patients who are disabled, vulnerable (minority groups, the elderly and the financially disadvantaged), or depressed. The chapter by Cohn and Lynn clearly and categorically refutes the claims seen almost constantly in the lay press and should be required reading for any journalist contemplating writing anything about assisted suicide.
The last section - A Better Way - includes chapters by Dame Cicely Saunders and Kathleen Foley, examining the state of palliative care and what needs to be done to improve it so that it provides better end-of-life care, for all those people who need it.
This book adequately accomplishes its goal of providing an open and tolerant discussion of both the case against assisted suicide and the case for palliative care. The book also provides some powerful insights into the shortcomings of the palliative care system and how it might be improved. The discussions are well written and are practical and clinically relevant. This excellent book will be a valuable resource for anybody interested in the delivery of better end-of-life care, whether they are clinicians, ethicists, or health care policymakers.
EUTHANASIA, ETHICS AND PUBLIC POLICY
An Argument Against Legalisation
Cambridge University Press, 2002
As indicated by the subtitle, this book is unashamedly against the legalization of euthanasia and physician-assisted suicide, but it is written in a moderate and reasoned tone and in a manner easily understood whether you are a health care professional, lawyer, politician or just an interested member of the public.
Keown first explores the inexactitudes and ambiguities that abound in the euthanasia debate, and then dissects the arguments for and against. This includes a description of the doctrine of double effects, although more recently published information suggests that it may not need to be invoked; Sykes et al (Lancet Oncology 2003; 4:312) found no evidence that initiation of opioid or sedative therapy is associated with the precipitation of death.
The second part of the book is an in-depth assessment of the practices in The Netherlands, the Northern Territory of Australia, and the U.S. State of Oregon, and includes a clear illumination of the inadequacy of the much-vaunted legal safeguards against abuse. Despite all their talk, the most recent data published by the Dutch (Onwuteaka-Philipsen et al. Lancet 2003;362:395) shows no sign of any reduction in the incidence of non-voluntary euthanasia or euthanasia without request. It is to be hoped that Cambridge University Press will invite Keown to prepare an up-dated edition as more information and data becomes available from The Netherlands and Oregon. The third part of the book critically reviews the findings of various expert committees, associations and the courts.
By no means everyone will agree with the conclusions and opinions expressed in this book, but it should be required reading for anyone who intends to make a public statement in the euthanasia debate.
Roger Woodruff(May 2004)
A Guide to Enabling a Good Death (2nd edition)
Radcliffe Publishing 2004
This is the second edition of Julia Neuberger’s book that was first published in 1999. The order of the material has been shuffled a bit and the discussion has been expanded and brought up to date with the discussions that are occurring in both professional and lay societies.
As for the first edition (although the order has been altered), ‘I found out about the origins of the attitudes to death and bereavement with which I grew up; I learned about the teachings and customs regarding death of the world’s major religions and how palliative care professionals can best deal with them; I was treated to an erudite discussion on the meaning of a “good death”, covering everything from common sense to euthanasia; and how we, whether we are health care professionals, family members, clergy, or friends, can help achieve it; and finally, a description of our society’s approach to grief and bereavement that does not shy away from pointing out what is wrong and why.’
Reading this book will be both enjoyable and beneficial to anyone who works in hospice and palliative care.
Roger Woodruff(June 2005)
The case for palliative care and patient choice
Timothy E. Quill and Margaret P. Battin (Eds)
Johns Hopkins University Press, 2004
This book was compiled in response to the volume edited by Kathleen Foley and Herbert Hendin (The Case Against Assisted Suicide; For the Right to End-of-Life Care, Johns Hopkins University Press, 2002; see review) and to stress what the authors see as the positive aspects of Physician-Assisted Dying.
The tone is set in the introduction. Those in favor of Physician-Assisted Dying champion the causes of patient autonomy, mercy (the relief of pain and suffering), and patient non-abandonment (all very positive), whilst those who oppose it are worried about the wrongness of killing, diminished integrity of physicians, and the risk of abuse (all very negative).
The book is divided into four parts. The first examines the critical values of autonomy and mercy. The second explores the clinical, philosophical, and religious issues that underlie end-of-life practices. Part three examines practice in Oregon and the Netherlands. The last section deals with some of the legal and political turmoil that has surrounded the debate on Physician-Assisted Dying in the United States.
The opening chapter by Marcia Angell in an impassioned statement, based around the tragic circumstances of her father’s suicide, that Physician-Assisted Dying should be legalized and that “many people would choose [it]”. But in Chapter 11, where Linda Ganzini reviews the Oregon data, it is seen that only between one-third and one-half of one percent of patients dying of cancer in Oregon have availed themselves of the State’s legalized Physician-Assisted Dying.
The chapter on patient autonomy deals with just that, and does not adequately address what effect legalizing Physician-Assisted Dying might have on the autonomy and rights of other people in society.
There are several chapters that discuss the Dutch practices, focusing particularly on the one thousand patients a year who are euthanased without specific request. [The fact that, according to the figures published by the Dutch, the incidence of non-voluntary euthanasia is a multiple of that number is not discussed]. But back to the one thousand. We are told that these patients had either expressed a wish for euthanasia at some time in the past (current wishes were not important) or they were incompetent. That’s not what the published data says. We are also told “In a number of cases [in which patients were euthanased without explicit request] the decision had been discussed with the patient.” That’s a new twist.
Mention is made in several chapters that, as a result of the open and honest system they have, the incidence of non-voluntary euthanasia is lower in The Netherlands than in other less advanced countries, including Australia. These studies (e.g. Kuhse et al) are based on deliberately ambiguous questions that have been publicly discredited. I received a questionnaire last year, based on the Dutch format, for the International Collaborative Study on End-of-Life Decisions in Medical Practice. It asked the question regarding a patient in pain “Would you intensify the alleviation of symptoms by using drugs, taking into account the possibility or certainty that this could hasten the end of the patient’s life?” So a good doctor, practicing good medicine, carefully titrating drugs to improve patient comfort, could or would be recorded as taking active steps to hasten death. So much for all those reports.
This is a worthwhile book and, given that any discussion has more than one side, I would recommend it to anybody with an interest in the debate about Euthanasia and Physician-Assisted Dying. But it did nothing to change my views, particularly about the Dutch practices. There are repeated references throughout the book that, if you just think about it properly, there is really no difference between hastening death and letting die. Death is a natural end to a life and will come to us all. Killing is something else. Or that’s what I think.
Roger Woodruff (May 2005)
ENDING LIFE: Ethics and the Way We Die
Margaret Pabst Battin
Oxford University Press, 2005
A Dutchman came to see me last week. In his 80s, but mentally very on the ball. Towards the end of our meeting, he said, ‘I want you to know that I am a very strong proponent of euthanasia.’ This, it turned out, evolved from watching his father die slowly over a ten-year period in a nursing home, blind and deaf. It sounded awful to me but I avoided asking how many courses of antibiotics and other life-prolonging measures had been administered during that time. When I suggested that modern palliative care might go a long way to preventing the pain and psychosocial suffering associated with a terminal illness, he was unmoved. He was both a fervent autonomist and scared of dying the way his father had.
This book is about the way philosopher Professor Margaret Pabst Battin thinks we should now move on from the currently polarized debate about physician assisted-dying, and along the way she presents a lot of interesting information about the way people die. She starts with the present for-and-against debate, exploring some of the issues in depth. The middle section of the book describes the influences of historical, religious and cultural concerns, touching on a wide variety of topics from serpent-handling to suicide bombing. The final section is titled ‘Dilemmas about Dying in a Global Future’ and deals with issues related to increased life expectancy, genetic prognostication, and ‘NuTech’ methods for committing suicide, before coming to the predictable conclusion that physician-assisted dying will come to be accepted as our culture changes.
In her introduction, Battin urged me not to address the issues surrounding physician-assisted dying in ‘all or nothing’ terms. But I failed to reach the required standard. I felt that her description of the Dutch practices was somewhat selective. I was encouraged to pass over the ‘notorious 1000’ patients who are euthanased each year without current request or consent. The clinical facts, as published by the Dutch authorities, is that the true number is a multiple of this when you include deaths related to treatment of pain and symptoms given with the intention of hastening death and deaths related to withholding or withdrawal of treatment done with the intention of hastening death, many of whom were euthanased without request or consent. A more detailed appraisal of Dutch practices can be found in John Keown’s Euthanasia, Ethics and Public Policy (Cambridge, 2002) and The Case Against Assisted Suicide edited by Foley and Hendin (Johns Hopkins, 2002), but I couldn’t find reference to either volume. And just to set the record straight, the Australian data on physician-assisted dying published by Kuhse, which is quoted, was based on unethical and ambiguous questions and was discredited years ago.
On the other side is the possession of personal autonomy. I am somewhat bemused that this is such an important and central tenet in the physician-assisted dying debate when we all relinquish bits of personal autonomy all the time, every day, because we live in a society. And what about the data from Oregon, where it is legal to exert your personal autonomy and receive physician-assisted suicide? During the four-year period 1998-2001, there were about 20,000 deaths from cancer in Oregon. Now if 60% of Oregonians voted in favour of legalizing physician-assisted suicide that might lead to as many as 12,000 requests. But during that period there were only 70 deaths by physician-assisted suicide of patients with cancer – which is one-third of one percent. There are more complex issues at work.
And just a word about suicide bombing. Forgetting the historical context from centuries ago, should we really “see these actions as defensible cases of martyrdom” in the twenty-first century? This might be appropriate analytical thinking for philosophy departments, but I wonder whether a lot of people down here on earth would agree.
This book is well-written and certainly thought-provoking. I would not hesitate to recommend it to anyone with an interest in the debate about physician-assisted dying or the historical and cultural origins of the way people die. I learned a lot of interesting things along the way and was entertained by Battin’s fictional essays. But would something as simple as improving pain control lead to fewer and fewer requests for physician-assisted dying? My Dutchman expects perfect pain control and euthanasia. And was I swayed towards legalizing physician-assisted dying? Not a bit.
Roger Woodruff, November 2005
END-OF-LIFE DECISION MAKING
A Cross-National Study
Robert H. Blank and Janna C. Merrick (Eds)
MIT Press, 2005
This is a collection of expert reports on end-of-life issues from twelve disparate countries – Brazil, China, Germany, India, Israel, Japan, Kenya, the Netherlands, Taiwan, Turkey, the UK and the USA – representing East and West, developed and developing countries. The topics covered in each chapter include health care costs, where people die, the use of advance directives, the cut-off point for aggressive care, and policies regarding euthanasia and physician-assisted suicide, allowing the reader to make comparisons. Particularly interesting is the influence that history, culture and religion bring to care of the dying and, in more recent times, the HIV/AIDS epidemic.
Many interesting questions are raised. Have structural adjustments mandated by the World Bank and the International Monetary Fund, that place more emphasis on curative care than on public health programs, actually reduce the standard of health care in places like Kenya? As is to be expected, the quantity and quality of the data varied widely across the spectrum of countries.
Needless to say, I read the chapter on the Netherlands with keen interest. Overall, ten Have provides a balanced discussion but to argue that euthanasia is controversial and not an established practice does not sit well with all the data that has come out of Holland in the last 20 years. And for the Dutch government to insist that the law does not legalise active euthanasia, but merely provides a punishment exclusion ensuring that physicians will not be prosecuted. That doesn’t really wash, either.
But I came away with a new word. Dysthanasia is a Brazilian term for the unnecessary prolongation of life, at all costs, when death is unavoidable.
Roger Woodruff, April 2007
Euthanasia, Assisted Suicide and the New Duty to Die
Wesley J. Smith
Encounter Books, 2005
Originally published in 1997, this edition has been up-dated to mid-2005 by American attorney and euthanasia expert, Wesley Smith. He describes the progress of the euthanasia juggernaut, which he describes as a death fundamentalism, and warns against the gradual decay of essential human values. The movement has changed from using the term euthanasia to ‘Aid in dying’, or ‘Deliverance’, or ‘Gentle landing’. Individualism, Choice and Control are the buzzwords. He discusses the deeds of Jack Kevorkian and Australia’s Philip Nitschke, the latter involving the infamous case of Nancy Crick. Said to be suffering from terminal cancer, hers was to be a widely publicized suicide, loudly applauded by the advocates of euthanasia, but at autopsy she didn’t have cancer or any other serious physical illness.
In the next chapter, he goes on to argue that we are creating a caste of disposable people. Nancy Curzon and Terri Schiavo feature here. The question boils down to whether or not life should be preserved for life’s sake, but I worry that after 10 or 15 years of persistent vegetative state, we might be guilty of prolonging suffering.
Smith then turns his sights on the Germans and describes how euthanasia was alive and well long before the Nazis came to power. He draws some worrying comparison with present trends. In his chapter on Dutch practices, which he describes as something much steeper than a slippery slope, he attempts to show how the rules (and now the legislation) were drawn up to legitimize behaviour.
Smith fervently believes that euthanasia betrays the morality inherent in medicine and says that euthanasia together with profit-driven Health Maintenance Organisations, with their emphasis on controlling costs by limiting services, make a deadly combination.
In the final chapter, Smith argues the pros and cons of creating a ‘right to die’ based on three questions.
This is a well-written, thoughtful and provocative book. Perhaps a touch over-dramatic in places but the ‘no holds barred’ approach appealed to me.
Roger Woodruff(April 2007)
DEATH AND POWER
An Ethical Analysis of Dutch Euthanasia Practice
Henk ten Have and Jos Welie
Open University Press, 2005
This book escaped my notice when it was first published and was brought to my attention by the robots at Amazon.com. The authors, who spent twenty years observing and writing about the Dutch euthanasia movement, studied medicine and philosophy (HtH) and medicine, philosophy and law (JW). It provides a good history of the medical, social and political aspects of the debate, with more background information about what else was going on in Holland at the time than you would find in the medical literature. There are chapters providing a detailed analysis of Dutch euthanasia practices as reported, the response of the legal system, and an assessment of the ethical aspects of the debate. The final chapter is about what lessons can be learned from the Dutch experience, which should be read by more people involved in the debate in other countries. Their description of all the manoeuvrings on the part of the proponents of euthanasia, how medical acts were re-defined, re-classified and re-interpreted over the thirty years, makes fascinating reading.
And the title? It stems from their observation of the paradox that one of the origins of the euthanasia movement was to empower the patient rather than the doctor, but they have ended up with a system in which the doctor is all-powerful.
This book reinforces my views that euthanasia as practised in The Netherlands is neither controlled nor controllable. And remember, this book was published before the recent surge in deaths from terminal sedation reported from Holland. If you have an interest in the euthanasia debate and, like me, you missed this book when it was published, it’s a must read.
Roger Woodruff (October 2014)
UNPLUGGED. Reclaiming Our Right To Die in America
William H. Colby
American Management Association, 2006
William Colby was the lawyer who represented Nancy Cruzan in the first right-to-die case heard by the U.S. Supreme Court. Nancy died after being in a persistent vegetative state for 8 years, but 4 years after her family unanimously agreed that her feeding tube should be removed. Here, Colby dissects the implications of the case of Terri Schiavo, who suffered irreversible brain damage in February 1990 but wasn’t allowed to die until Easter 2005. The first part of the book is about the bitter feud that broke out between Terri’s husband and her family and the years of legal wrangling that ensued. It is very well written and I found it hard to put down. When the courts finally said Terri’s feeding tube could be removed, Florida Governor Jeb Bush stepped in and over-ruled them with legislation that was dubbed ‘Terri’s law’. The law was immediately declared unconstitutional by the courts, but it took another eleven months of appeals before the Florida Supreme Court unanimously ruled it to be so. When that failed, legislation was hastily pushed through the Senate and House of Representatives, which brother George got up to sign at 1.00 in the morning.
But let’s be fair to Colby. This book is about the ramifications of Terri Schiavo’s case and it is well-researched and well written. How does a modern society grapple with cases like this? He provides a good description of the rapid advances made in medical technology over the last 50 years, followed by the advent of Living Wills and the like. He manages to provide a view of the problems from the point of view of ordinary people, health care professionals, spiritual leaders and legislators. The views of Pope Paul II and the infamous Dr. Kevorkian feature too, as does the Oregon physician-assisted suicide program. Hospice and palliative care are described as the jewel in the crown. To his credit, Colby never seems to take sides. He even has empathy with the demonstrator carrying a placard saying “Hospice Auschwitz”. Fascinating reading.
Roger Woodruff (March 2007)
THE FUTURE OF ASSISTED SUICIDE AND EUTHANASIA
Neil M Gorsuch
Princeton University Press, 2006
A Harvard law graduate with a doctorate in legal philosophy from Oxford University, Gorsuch examines in detail all the political, legal and philosophical goings-on surrounding the debate about legalizing physician-assisted suicide and euthanasia in the United States. It is very well researched and clearly written. His arguments are clear and substantiated. His description of practices in The Netherlands is unforgiving, which is exactly how this reviewer thinks it should be. The last part of the book deals with Gorsuch’s moral and legal argument against legalization based on the idea that human life is intrinsically valuable and that intentional killing is always wrong, whilst leaving latitude for patient autonomy. While Gorsuch’s views are clear, his dissections are balanced, and this book should be read by supporters, opponents and the undecided.
Roger Woodruff (June 2007)
MEDICAL CARE AT THE END OF LIFE
A Catholic Perspective
David F. Kelly
Georgetown University Press 2006
David Kelly is professor emeritus of Theology and Health Care at Duquesne University in Pennsylvania. He brings a rich experience to this discussion of ethics in end-of-life care. I was particularly interested in the historical perspective – one is always a little surprised to be reminded how much things have changed during one’s own professional lifetime. The case of Theresa Shiavo and the Papal allocution of 2004 feature prominently. However, Kelly does not dodge any hurdles and argues cogently for what he believes is ethically correct. He believes strongly that some life-sustaining treatment is ethically optional and may be withheld, and that there is a clear difference between actively killing dying people and allowing them to die. Who should make the decisions, and how they should be made, are discussed at length. This is an excellent guidebook for anyone interested in ethical decision-making in end-of-life care.
Roger Woodruff (June 2007)
Rescuing the End of Life from the Medical System
Stephen P. Kiernan
St. Martin’s Griffin, 2006
This book is about how we can help our loved ones die in peace. The focus is on life and ‘how its waning days could be peaceful and pain-free, and how caring for people at their most vulnerable can be an incredibly fulfilling experience’. It is not about physician-assisted death or grief and bereavement or cultural variations, it is about helping people get the most out of the last bit of their lives.
I was impressed. Written by a professional journalist, an enormous amount of research must have gone into writing this book. His investigative insights are sound and it is a good read.
With lots of stories about patients and their families, Kiernan paints a picture of what happens now and what might be, from the perspectives of the families, the patients, and the professionals. There are a range of suggestions for policy makers, the profession, and the public at large as to how things could be improved.
Enjoyable and insightful.
Roger Woodruff September 2011
DYING. A Memoir
Viking (Penguin) 2007
Donald Horne (1921-2005) was a well known Australian author and academic who came to prominence in 1964 with the publication of The Lucky Country, an evaluation of Australian society that questioned many attitudes.
Suffering terminal pulmonary fibrosis, Dying is his record of the experience of dying. It is a remarkable journal in which memories of his well-lived years sit alongside his unflinching view of their end. Ever the intellectual, he also recorded his last thoughts on such matters as faith and regret, the rewards of the engaged mind, the Iraq War, and the meaning of democracy, which are included as essays. There is also a poignant memoir of his last few weeks by his wife and long-time editor, Myfanwy.
Roger Woodruff (January 2008)
LET THEM GO FREE
A Guide to Withdrawing Life Support
Thomas A. Shannon and Charles N. Faso, O.F.M.
Georgetown University Press, 2007
This little guide is written to help people facing decisions about taking a loved one off life support. Written by an emeritus professor of religion and social ethics from the UK (TS) and a Franciscan friar and Catholic priest from Chicago, Illinois (CF), it clearly sets out the steps that have to be taken. It is written simply and in a very warm and supportive manner. It also includes an ecumenical prayer service, with a variety of readings and prayers from Hebrew and Christian scripture, which could be used before life support is withdrawn.
Roger Woodruff(April 2007)
TO DIE WELL
Your right to comfort, calm, and choice in the last days of life
Sydney Wanzer and Joseph Glenmullen
Da Capo Press, 2007
This book is written for the lay reader, presumably the patient with a terminal illness or a member of their immediate family. It covers two broad areas. The first is about appropriate life-prolonging therapy with patients with a terminal illness or conditions like irreversible dementia. Some of the examples given beggar belief. Wanzer’s own totally demented, 92 year old mother, with a documented advance directive against invasive procedures, had a cardiac pacemaker inserted and was sentenced to live on for another five years. The totally demented man who had a hip replacement because he had a fractured neck of femur. Etc, etc. I have no problems with the arguments here.
The second issue relates to the need to legalise physician-assisted dying in the face of intolerable suffering and the presence of a terminal illness. Here I have problems. Wanzer correctly states that this is a situation that one might encounter once or only a few times in a professional lifetime, but I am concerned that a patient or family member reading this would assume that their risk of encountering intolerable suffering was high. And who judges ‘intolerable’? Over the years, I have seen hundreds of patients (if not more), referred with intractable symptoms and unrelieved suffering. But with attention to detail and the help of the multidisciplinary team, their symptoms and suffering were brought under good control. So whilst you might entrust someone as experienced as Dr. Wanzer, to give the same powers to all doctors, many of whom have little experience in symptom control or end-of-life treatment, is a concern. He points out that the experience in Oregon shows no evidence of a slippery slope, but I would contend the Dutch have shown otherwise. He does not point out that the intractable suffering of the Oregon patients was largely psychosocial rather than physical/medical. And, of course, the results of public opinion polls are trotted out in support. As in most countries, these are basically ‘Do you want your loved one to die in agony or legalise physician-assisted suicide?’ No one should die in agony, but my experience is that with good palliative care and multidisciplinary support, the incidence of intolerable suffering is extraordinarily low.
I have no doubts about Dr. Wanzer’s sincerity and he has done a lot to advance the discussion on end-of-life issues within the profession. His arguments about appropriate therapy? Long overdue. But physician-assisted dying? Neither necessary nor desirable.
Roger Woodruff (January 2008)
MEDICINE AND CARE OF THE DYING
Milton J. Lewis
Oxford University Press, 2007
Has modern scientific medicine put curing the body before caring for the person? I guess most palliative care workers would think so. The opening chapters trace the historical and religious origins of this issue. Chapter 3 focuses on the treatment of cancer as an example to demonstrate the strengths and weaknesses of modern scientific medicine. The following chapters detail the development of palliative care and pain control. The last chapter is about the history and present status of the euthanasia movement. As has happened before, I did not entirely agree with everything I read in the chapter on euthanasia, but the historical descriptions of what happened in the late 19th and early 20th centuries were most interesting. This book will be of interest to anyone who works in palliative care and anyone interested in end-of-life issues.
Roger Woodruff(July 2007)
EUTHANASIA AND LAW IN EUROPE
John Griffiths, Heleen Weyers and Maurice Adams
Hart Publishing, 2008
Written by three academic lawyers from the Netherlands and Belgium, this book describes recent trends in the practice of euthanasia and physician-assisted suicide, the evolution of the associated law, and systems of control for these practices. The prime focus is on the Netherlands, with a smaller section on Belgium, where legislation to legalise euthanasia was passed more recently. The third section details what is known about practices in other European countries. The book is detailed and well researched, if not light reading.
This is an excellent book that should be read by anybody with an interest in the debate about euthanasia and physician-assisted suicide, but the data presented does not ease my concerns about practices in the Netherlands. They report a recent reduction in the number of patients treated by euthanasia without request and in the number of euthanasia cases overall. But these seem to be balanced by a rise in deaths associated with ‘palliative’ sedation. (It was called ‘terminal’ sedation, but was changed to ‘palliative’ probably because it sounds nicer). When last surveyed, Dutch doctors said they used ‘palliative’ sedation for the purpose of hastening the patient’s death in 50% of cases. But, in classifying the types of deaths, we are told the Dutch have now moved past worrying about the doctor’s intention. To me, there is a huge difference between giving sedation to a terminally ill patient and carefully titrating it to control clinical symptoms, and using larger doses with the intention of hastening/precipitating the patient’s death. The Dutch need to provide data on patients dying with ‘palliative’ sedation—what drugs were used, what doses were given, and what the intentions were. That would be interesting, very interesting. Could the fact that deaths occurring with ‘palliative’ sedation do not attract the same legal reporting requirements as deaths associated with euthanasia and physician-assisted suicide be relevant?
The other major theme in this book relates to the system of legal control. Griffiths, who is responsible for ‘a substantial research programme on the regulation of socially problematic medical behaviour (RSPMB)’, describes in some detail all the legal and legislative activity that has been designed to tighten the rules. As a physician, not literate in matters legal, I was left wondering whether they were really making headway or whether the Dutch had actually dug themselves a very deep hole. And legal rules need punitive teeth to be effective. When I last reviewed the results of Dutch trials regarding euthanasia/murder, I was amazed at the almost complete lack of punishment for those found guilty. Dr Van Oijen’s case (described on pp 40-41), involved a hearing by the Medical Inspectorate following which he was tried for murder (in the District Court, the Court of Appeals, and finally the Supreme Court) and found guilty, for which he was given a conditional fine of 5,000 guilders (about €2,250).
Roger Woodruff (February 2010)
Should medicine’s last ‘last resort’ be legal?
The Hastings Center Report Volume 38, No. 5, September-October 2008
The September-October 2008 issue of The Hastings Center Report has a collection of four essays exploring the issues in the debate on physician-assisted death. Timothy Quill and Margaret Battin give the appearance putting forward balanced arguments, seen from both sides, but this is really a veil and their stance is obvious. Timothy Quill admits physician-assisted death is imperfect, whilst arguing strongly about its necessity. Margaret Battin equates terminal sedation with ‘pulling the sheet over our eyes’. I have not been convinced by their arguments in the past and remain unswayed, but their essays are worth reading for any student of this debate. Susan Wolf’s essay is about her own father’s terminal illness and death and the personal anguish she felt; but on later reflection is very content that physician-assisted death was not employed. The jewel in the collection is Daniel Callahan’s essay on advocacy for physician-assisted suicide, which he describes as ‘organised obfuscation’—an effort to render something unclear, evasive or confusing. This is a pleasure to read, as he clearly and concisely reduces the marketing of physician-assisted death to just that—organised obfuscation. He concludes ‘…the way single-minded advocates can foul the waters of public debate. Stirring up some verbal muck can work wonders for a bad cause.’
Roger Woodruff (July 2009)
A GOOD DEATH
An Argument for Voluntary Euthanasia
Melbourne University Press, 2008
Here is another book to be recommended to anybody involved with the debate about euthanasia and physician-assisted suicide, although many may not agree with what is said. Rodney Syme is a Melbourne urologist who has been at the forefront of the push to legalise physician-assisted death in Victoria and has served as the president of the Voluntary Euthanasia Society of Victoria, now sanitised to Dying With Dignity Victoria. The book recounts some of his clinical experiences over the years, from which he develops his arguments to challenge the legal and legislative fraternities and take a swipe at the palliative care community.
I was a bit put off by the style. The clinical histories are described in a melodramatic way and I didn’t like the repeated use of exaggerated adjectives—anguished signature, progressive ravages, remorseless progression, etc. And the blind lady who bid him farewell as he vanished into the darkness?
I was a little more off-side when labelled a hypocrite because I didn’t agree that ‘the intention of a doctor [using terminal sedation] to relieve intolerable suffering is no different from that of a doctor who provides or administers medication that causes death quickly.’ I beg to differ. He argues that patients treated by ‘pharmacological oblivion’ (his term for terminal sedation) should be subject to coronial enquiry. I was unconvinced by his argument that terminal sedation, not possibly, but always hastens the patient’s death. In contrast, he says our more enlightened Dutch colleagues acknowledge that voluntary euthanasia will hasten death. Should do, if they do it right.
I was a little confused on the autonomy thing, which is a strong theme that runs through the book. He describes Philip Nitschke’s computerised injection technique as ‘allowing that person to control totally the delivery of the lethal medication.’ Not after they click on ‘Yes’. And ‘the Dutch experience’—the 1000 patients a year euthanased without request? I don’t think it was mentioned.
I was more confused by his attitude to palliative care. He states on several occasions how much he supports it, but describes the palliative care process as intrusive for the patient and family, and palliative care professionals with ‘the mindset’ (not agreeing with his views) as hypocrites. He describes as laughable Michael Ashby’s statement that ‘… intentional ending of life is not part of palliative care practice and is different in kind from all other clinical intentions.’
Overall, the book is rather predictable. There are the usual references to polls, the surveys of professional behaviour (since discredited because of ambiguous questions), recounting of terrible end-of-life stories, and quotes from the usual suspects—Timothy Quill and Marcia Angell, for example.
On reflection, Syme gives some good examples of why physician-assisted death should not be legalised. Working alone, facing patients with severe suffering, he repeatedly admits feeling professionally inadequate. What did he do when he visited the family friend, not under Syme’s care, dying of cardiac failure with severe breathlessness? Ordered the nurse to draw up the large dose of morphine (written up by the treating doctor), which he immediately administered by intravenous injection. What, I ask, will happen when doctors with less experience of end-of-life care than Syme are faced with similar suffering?
No sheep’s clothing here.
Roger Woodruff July 2008
Is There A Case For Assisted Dying?
Mary Warnock and Elisabeth Macdonald
Oxford University Press, 2008
This book is to be recommended to anybody involved with the debate about euthanasia, although not all will agree with what is said. Written by a moral philosopher (Baroness Warnock) and a retired cancer specialist, this book sets out to provide a balanced discussion of what would be necessary for the legalization of physician-assisted suicide in the UK, to define what the issues really are. It certainly adds some intellectual tenor to the debate, although my reading was more than a little troubled.
I started off a little off-side when I read that I was one of those who were standing in the way of ‘what society demands’, trying to ‘impose their convictions on the quiet majority’. The 2007 public opinion poll that is cited is not referenced, but when I last reviewed the public opinion polls from around the world, they mostly boiled down to ‘Do you want to die in agony or legalize physician-assisted dying?’ I have had a handful of serious requests for assisted-dying in 30 years of working as a medical oncologist and palliative care physician, which doesn’t support what the newspaper polls tell us.
Then I stumbled at there being no morally relevant difference between killing someone and allowing them to die. I would contend that there is a great difference between accompanying a dying patient, allowing them to die and not artificially prolonging their life, and giving them a premeditated lethal injection. I was quite unconvinced by their philosophical arguments that killing patients was really no different to what I now do and wondered whether theoretical moral philosophy should be confined within ivory towers and kept out of the clinic.
I tripped at their dealing with ‘the Dutch experience’—the 1000 patients who are euthanased without request each year. This was to be neither a concern nor a reason not to change the law in the UK, because the figures were not reliable as information was hard to obtain; but if we had information on the 40-50% of cases of euthanasia that are presently not reported, the figure isn’t going to be less than 1000 patients per year and may possibly be much higher. It was also implied that many of these cases were handicapped babies; my copy of the New England Journal of Medicine indicates that more than 50% of the patients subjected to non-voluntary euthanasia were 65 years or older in the 1995 and the 2001 surveys.
I baulked at their reassurance that there is no evidence of increased assisted dying for vulnerable groups (the disabled, elderly and those with psychiatric illness) in the Netherlands; as we only have information on a little over half of the cases, such a conclusion is speculative. The reports from Darwin and Oregon reveal a preponderance of socially isolated individuals who could be described as a vulnerable group, but this is not discussed.
I was uncertain which way they wanted to go on the slippery slope business. Early in the book, they argue at length that slippery slopes don’t exist but later conclude that future legislation will only succeed if it has guarantees against such slopes.
Does it present balanced arguments? I think not. In the end, I felt this book was a bit of a wolf in sheep’s clothing and wondered whether there was a philosophical position on the honesty of wolves.
Roger Woodruff July 2008
CHOOSING LIFE, CHOOSING DEATH
The Tyranny of Autonomy in Medical Ethics and Law
Hart Publishing, 2009
‘Autonomy is a vital principle in medical law and ethics, but there is a dangerous presumption that it should have the only vote, or at least the casting vote. This book is an assault on that presumption, and an audit of autonomy’s extraordinary status.’
Written by a London barrister who also teaches medical law and ethics at the University of Oxford, this is a book about medical law, not a treatise on medical ethics. Foster discusses a range of contentious issues from reproductive technology, to abortion, to confidentiality and consent, and, needless to say, euthanasia. In a style both entertaining and informative, Foster turns his gaze on the views of autonomists, pointing out where they are valid and where they have been carried way too far, particularly in relation to the debate about euthanasia and end-of-life decision making. I particularly liked his list of the ‘many reasons why autonomy, if it were consistent, would oppose euthanasia/physician-assisted suicide’.
I had trouble putting this book down. If you have an interest in medical ethics or are involved in the debate about euthanasia/physician-assisted suicide, it comes strongly recommended.
Roger Woodruff (March 2010)
AGAINST PHYSICIAN ASSISTED SUICIDE
A Palliative Care Perspective
Radcliffe Publishing, 2009
This is a clearly written review, concise but thorough, of the pros and cons of legalising physician-assisted suicide (PAS) in the UK viewed from the perspective of palliative care. Jeffrey does an excellent job of presenting both sides of the argument, but fudging, double-talk and euphemisms are given their due. I hadn’t been aware of the significant recent increase in deaths associated with deep sedation in the Netherlands, possibly related to the fact that such deaths do not attract the same legal reporting requirements as deaths associated with euthanasia and PAS. Anybody who has an interest in the debate about PAS and euthanasia should read this book.
Roger Woodruff (February 2010)
END OF LIFE CHOICES
Consensus and Controversy
Fiona Randall and R. S. Downie
Oxford University Press, 2009
This book was a pleasure to read. As in their previous volumes, Randall and Downie have the ability to write clearly and to develop arguments that are logical and transparent, all of which is a refreshing departure from a lot of the stuff published on euthanasia and physician-assisted suicide.
The first part of the book is about choices and argues that the best interests of patient are promoted by means of the traditional aims of medicine: to prolong life, to alleviate suffering, and to restore or maintain function, but they draw a clear distinction between patient choice and what might happen if patients are simply regarded as consumers with end-of-life services run on consumerist lines. In their no nonsense way, they state that to understand decision-making in end-of-life care requires us to distinguish between intended and foreseen consequences, between acts and omissions, and between killing and letting die. And the arguments of Mary Warnock and others are chopped up despatched.
Part two of the book is about issues in end-of-life care that are controversial. Is advanced care planning, as we know it today, the right way to go? Does it promote unrealistic patient expectations, does it cause avoidable emotional distress? They asked whether we should be asking a different question regarding the preferred place of care and death. The chapter on physician-assisted suicide and euthanasia debunks the arguments that some morally acceptable practices are equivalent to euthanasia and confronts the ‘dignity’ and ‘right to die’ arguments head-on. The ‘human rights’ issue casts a shadow, but one can argue that it has been taken too far in many fields besides end-of-life care.
A substantial appendix on ethical theories and terms is available on-line.
The material in this book is well-presented and articulate. If you are going to delve into these matters only once this year, this should be the book.
Roger Woodruff August 2011
THE CASE OF TERRI SCHIAVO
Ethics, Politics and Death in the Twenty-first Century
Kenneth W. Goodman (Ed)
Oxford University Press, 2010
Much has been written about the terrible story of Terri Schiavo, who in 1990 suffered a cardiac arrest that led to a persistent vegetative state, but was not allowed to die until March 2005. In Goodman’s words ‘…when politics intervened, the Terri Schiavo story turned from tragedy to farce … a riot of kooky views and political vehemence.’
But this is a very serious book that sets out to dissect what we can learn about end-of-life care and decision making from this case. The ten essays in this volume are written by a range of experts including ethicists, medical specialists and attorneys and cover the moral, ethical, medical, religious and legal aspects. One can argue that there should not have been a political dimension. The role of the media ‘to agitate and inflame public sentiment’ is rightly criticised in the final chapter.
One little fact that I had not been aware of was that the Congress of the United States subpoenaed the permanently unconscious Ms. Schiavo to appear and testify. Hmmm.
Roger Woodruff (March 2010)
END-OF-LIFE ISSUES, GRIEF, AND BEREAVEMENT
What Clinicians Need to Know
Sara Qualls and Julia Kasl-Godley (Eds)
John Wiley and Sons, 2011
This is an informative and practical guide to the issues involved in end-of-life care, be they the needs of the patient and family or matters that are of concern to professionals or institutions. It focuses on end-of-life care for our ageing population and is primarily directed at mental health professionals. But much of what is written is applicable to adults of any age and I think it should have a much wider audience than just mental health professionals. I think it would be of interest to palliative care professionals and to anyone involved with end-of-life care for older adults. There are good discussions on spirituality and meaning, advance care planning, grief and bereavement, professional self-care, and changing attitudes and behaviours (with regard to end-of-life care) in communities. I like the book because it was clinically practical, written by practicing clinicians, with due regard to the evidence base (such that it is), but without any long-winded discussion of theory.
I particularly liked Canetto’s clear dissection of the ‘model statute’ that underpins Oregon’s Assisted Suicide legislation, showing it to be ‘far from being carefully crafted.’
Roger Woodruff (April 2011)
DEATH WITH DIGNITY
Legalized Physician-Assisted Death in the United States 2011
Stuart C. Goldberg Esq.
No publisher cited
ISBN 978-1463 65084 1
Written by an attorney, this is a self-help manual for Oregonians and Washingtonians to help them understand and use their (wonderful, new) Death with Dignity Acts, and a guide for people and legislators in the other 48 states who want similar laws. I thought it was a bit macabre, certainly sad.
Viewed from afar, the absolutely miniscule number of people who have committed suicide under the Oregon Act, together with the fact that many were categorised as possibly being able to be helped by other compassionate interventions, brings into question the need for these laws.
In Australia, voting is compulsory. If you are 18 or over, you vote. So, if a referendum for physician-assisted suicide was passed here, I would have to sit back and acknowledge that that was what more than 50% of the population wanted. I have not seen the voter turn-out figures when these Acts were passed, but I suspect they were not high.
I was amused by some of the detail. Were I to give a patient a supply of lethal medication with which they subsequently took their life, the terms ‘suicide’ and ‘assisted suicide’ would certainly come into it. But to call it that is against the law in Oregon. Reminded me of Humpty Dumpty in Through the Looking Glass.
I suppose people working in palliative care need to know the book is out there.
Roger Woodruff (February 2012)
DEATH WITH DIGNITY
The Case for Legalising Physician-Assisted Dying and Euthanasia
Mill City Press, 2011
I didn’t find anything new in this book. It is a tirade of facts, aligned to demonstrate that he is correct, and I thought the occasional derogatory comment to those who hold a contrary view were unnecessary. There is a lot of trumpeting of the results of public opinion polls; much has been written on how meaningless they may be. To give him his credit, he raises the possibility that the recent increase in palliative sedation in the Netherlands might be doctors practising euthanasia without all the bureaucratic hassles; given the reports that palliative sedation is used with the intention of hastening death, I would have though that to think otherwise would be naïve.
Roger Woodruff March 2011
ASSISTED DEATH IN EUROPE AND AMERICA
Four Regimes and Their Lessons
Oxford University Press, 2011
This review is written by an octogenarian emeritus professor of political science who states ‘I have arrived at a stage in my life when the issue of dignified and compassionate end-of-life care is of more than theoretical interest.’ The focus is on how the systems are working rather than the pros and cons of euthanasia and physician-assisted suicide.
Lewy seems satisfied with everything in the Netherlands. He doesn’t confront the issue of intent. When the Dutch were challenged about whether intent mattered, they stopped reporting it. He mentions euthanasia without request or consent, but seems to gloss over it. Reading the journals, it would seem that the recent reduction in euthanasia in the Netherlands has been balanced by an increase in ‘terminal sedation’, and in the majority of cases it was the doctors’ intention to hasten death. The difference is that terminal sedation is not subject to the same stringent reporting criteria that apply to euthanasia. In short, it’s pretty much all tulips in the Netherlands.
I was startled by the statement that ‘among European physicians, Dutch doctors are now considered the best trained in [palliative care]’. I thought a few people from across the Channel might have something to say about that.
Lewy’s view of euthanasia in Belgium is up-beat, with few criticisms. What happens in Switzerland is anybody’s business, with Exit and Dignitas coming into conflict with government recommendations. The discussion of physician-assisted suicide in Oregon touches on some of the problems, but does not provide any arguments to counter the criticisms levelled by Kathleen Foley, Herbert Hendin, John Keown and others. I am afraid his last chapter, ‘Assisted Death as a Last Resort’ did not hold much water.
I don’t doubt Lewy’s scholarship or sincerity for one moment, but I found the conclusions he reached were curious. I am uncertain whether this relates to non-medical eyes or to the focus being on the regimes rather than the practices. I would recommend this book to anyone involved in the euthanasia debate as an example of how an intelligent but non-medical person can interpret the data that is out there.
Roger Woodruff August 2011
THE BEST CARE POSSIBLE
A Physician’s Quest to Transform Care Through the End of Life
‘Americans are scared to death of dying.’ That is the starting point for Ira Byock, one of the leading voices for palliative care in the USA, to take us through the problems in the health care system and in society that result in so many people dying badly or in suffering. These problems will increase as the older population begins to outnumber the young. Medical suffering aside, I was surprised by the statement that, even before the recent recession, ‘well over a million American families annually filed for bankruptcy due to health care costs.’ Byock, with the use of clinical vignettes and a lot of personal experience, explains how things might be done better, whilst admitting that it would be tantamount to a revolution in health care. His appeal is for better treatment of people with advanced disease and the dying, but he has no problem with the co-existence of medical excellence and tender human caring. Well-told, this book advocates strongly for the need for change in the way we look after people at the end-of-live. And although written about America, many of the matters discussed apply to other ‘developed’ countries. It was a pleasure to hear Byock speaking out about matters that concern many of us.
Roger Woodruff (May 2012)
Emily Jackson and John Keown
Hart Publishing, 2012
Two heavyweights address the question of euthanasia, without knowing what the other has written. Emily Jackson is Professor of Law at the London School of Economics. Professor John Keown, who formerly taught law and the ethics of medicine in the Faculty of Law at Cambridge University, now holds the Rose F. Kennedy Chair in Christian Ethics in the Kennedy Institute of Ethics at Georgetown University.
The argument for change is made by Emily Jackson, who maintains that the case for status quo is indefensible, and I was left feeling she would know a number of ways in which I could be made a better person. She starts with a number of quotations from the emotional, highly-publicised cases, arguing that the law should be changed to accommodate the exceptional few; as a physician, I was led to believe that laws developed on exceptional cases were usually not good law. She argues against the various claims that change would be bad, but her recommended solutions are quite impractical. The need for a consistent request is self-evident, but the way she writes might lead you to think that doctor-patient interactions are black and white, clear-cut, and immune to all outside pressures on either party; the opposite is true. Her caveat that the patient is mentally competent is also self-evident, although how to establish this continues to worry the psychiatrists of Oregon and the UK. She advocates a social support ‘filter’ and a palliative care ‘filter’, but exactly how these would function is not defined. Given that no two patients present the same problems, it would be extraordinarily difficult and expensive to set up; from the clinical standpoint, it would verge on the impossible. I enjoyed reading her well-written and well-argued chapter, but nothing she said led me to think that a change in the law would be a good thing.
In return, John Keown (Euthanasia, Ethics and Public Policy, Cambridge University Press, 2002) quietly addresses the major reasons for changing the law – autonomy, legal hypocrisy, a right to suicide, compassion, and public opinion – and rebuts them all. Discussion of what is happening in the Netherlands and Oregon doesn’t lessen his argument. In particular, he notes that the apparent recent decrease in euthanasia in the Netherlands has been accompanied by a parallel increase in the use of terminal sedation, a procedure that does not involve the same regulatory and red-tape requirements as euthanasia. He goes on to dissect two of Emily Jackson’s recent papers and points out the fundamental flaws of the Joffe Bill.
A concise and excellent summary of the current state of play in the debate about assisted dying.
Roger Woodruff (January 2012)
PHYSICIAN-ASSISTED DEATH IN PERSPECTIVE
Assessing the Dutch Experience
Stuart J. Youngner and Gerrit K. Kimsma (Eds)
Cambridge University Press, 2012
This is an important book for anyone with an interest in euthanasia and physician-assisted death (PAD). It is a collection of essays written by ‘the leading Dutch scholars and clinicians who shaped euthanasia policy and who have studied, evaluated, and helped regulate it’. So, this is the Dutch themselves telling us why they did it, how they did it, how they regulated it, and how good it is. Once I started reading it, I had trouble putting it down.
The cast of contributors is interesting. Youngner is a psychiatrist from Cleveland, USA. Kimsma describes himself as a ‘practicing physician and philosopher’. Of the other 20, there are six doctors (two neonatologists, one epidemiologist, one ethicist, one psychiatrist and one public health specialist), plus three philosophers, three sociologists, two historians, two lawyers, two political scientists and two psychologists. Not your average crew from the medical coalface, I think they are what Cohen-Almagors (p.100) calls the ‘euthanasia elite’—the people who drive the agenda. I felt none of them would hesitate to tell me how I could be made a better person. People and organisations opposed to euthanasia because of the effect it might have on medicine, law or society are generally regarded as stupid, blind or hung-up on religion—which was one of the downsides of this book for me.
The book is divided into six sections: Background and History, Regulation and Practice Deficiencies, Quality Assurance, Learning from the Practice, the Challenge of Unbearable Suffering, and a concluding Overview.
But for all their talking and all the words here, I remain totally unconvinced that they have done a good thing or that they have got it right.
The unreported cases? Well, they decided there was too much emphasis on the physician’s intentions in the earlier studies and switched to the drugs used. They hide behind the observation that opioids, properly used, may not be life-threatening and so opioid-related deaths are not euthanasia, which brings the proportion of unreported cases down very nicely. My understanding is that the same opioid drugs, improperly used, are lethal.
The rise in palliative sedation? In 2005 it was reported that there had been a fall in the incidence of euthanasia and assisted suicide, but there was a compensatory rise in palliative sedation. Were the Dutch doctors trying to avoid all the legal strings attached to performing euthanasia? Well, ‘the 2005 study… was not designed to examine this [question]’, but suggests that it ‘reflects positive choices in favour of palliative sedation.’ Now, if I had two clinical options that resulted in the same outcome (the death of the patient, in this case) and one required hours of talking and paperwork and carried a remote risk of prosecution, and the other had none of the above…
Euthanasia without explicit request? ‘Observational studies on the characteristics of practice cannot be used to prove that physicians [who euthanase patients without explicit request] were right or wrong.’
The definition of unbearable suffering? This pillar of the Dutch movement is beset with subjectivity, but it is all settled if ‘[the doctor] grasps the public norm concerning unbearableness.’
Much is made of the wonderful Dutch system of general practitioners whom, it says, the patients trust with their lives and their deaths. We are reassured that a request for euthanasia changes the physician-patient relation to an even higher level and that this ‘connection’ allows objectivity in proceeding to euthanasia. This implies Dutch doctors never get tired, never feel anxious or depressed, are immune to all extraneous aggravations and always make calm and perfect judgements in their patients’ interests. Oh, but …‘it is certainly possible that some physicians practice PAD without the emotional sensitivity that we have agreed is necessary…’
Euthanasia is the best form of palliative care? That’s a bit close to the bone! ‘Excellent palliative care and physician-assisted death may go together, both in practice and principle.’
The author of the last chapter acknowledges that most of the heady ideals of the 1970s, when ‘the Dutch saw their country as a shining example for all the world to follow’, have collapsed or backfired. But she declares herself to feel smug about their euthanasia policy, ‘something we did really right.’
Did they? But it’s fascinating reading!
Roger Woodruff (February 2013)
THE HASTINGS CENTER GUIDELINES FOR DECISIONS ON LIFE-SUSTAINING TREATMENT AND CARE NEAR THE END OF LIFE. 2e
Nancy Berlinger, Bruce Jennings, Susan M. Wolf (Eds)
Oxford University Press, 2013
Reports and publications from the Hastings Center have been influential in shaping and defining our professional attitudes to ethics of clinical care, particularly in regard to euthanasia and physician-assisted suicide (PAS) and other matters related to end-of-life care. This second edition of their Guidelines is very welcome and provides a clear and reasoned approach to the different clinical scenarios.
The book is divided into three parts. The first is about the ethics of good end-of-life care, the education competencies required, the organisational systems that should be in place, as well as socio-economic and legal factors. The second part deals with guidelines on care planning and decision making, including the decision-making process and guidelines for pediatric patients, care transitions, and for institutional policies. The third part is about communication in the support of decision-making and care. In addition to the straightforward cases, it includes interesting sections on supporting the decision-maker when loved ones disagree, how to approach a dying patient who has an implanted defibrillator, and the institution or withdrawal of a range of treatments from cancer chemotherapy to dialysis; it also includes a good discussion on the relatively new topic of palliative sedation.
I didn’t find anything dramatically new or controversial; in fact, I didn’t find anything with which I disagreed. But it’s nice to have it all in one place. It’s a pleasure to read as the material is logically sequenced and each statement or recommendation is justified—you feel each bit has been thought through and care taken to write it clearly. If you have an interest in the ethical underpinnings of what we do, this book is for you. If you teach about ethics and clinical practice, or are responsible for it at your institution, this is required reading.
Roger Woodruff (July 2013)
A GOOD DEATH?
Law and Ethics in Practice
Lynn Hagger and Simon Woods (eds)
This book grew out of a 2008 UK Clinical Ethics Network Conference entitled ‘The Value of Life, the Value of Death.’ The editors, an academic lawyer and a philosopher, present a collection of ten essays written by a multidisciplinary cast, exploring some of the legal, ethical, moral, and social aspects of end-of-life care. The medical and nursing perspectives are not well-represented (or are viewed from an ivory tower), but there is a lot in this book to make you sit up and think. The chapter by Lord Justice Munby on the legal rights of terminally ill patients was a pleasure to read. Daniele Bryden asks whether the diagnosis of death, equating death of the organism with death of the person, needs to be re-defined for end-of-life planning and particularly when organ donation and retrieval are considered. John Erik Troyer explores the implications for end-of-life care of the constitutional changes wanted by the fundamentalist Christian anti-abortion Personhood groups in the USA. Would every patient have to have everything done, until they were dead? Hagger and Rehmann-Sutter advocate the need for liberalising assisted suicide in the UK along the lines of the Swiss model (which ‘reflects clear support for patient autonomy’) and provide help for anyone, regardless of the state of their medical health. Viewed as a clinician who deals with real patients, no two of whom are the same, I think it would be totally unworkable. Vincent Kirkbride discusses the escalating costs of health care in the last year of life, whether or not we should expect a right of access to expensive treatments, and the turbulent history of the National Institute for Health and Clinical Excellence (NICE) restricting the use of expensive new anticancer drugs. Wood’s chapter on palliate care and the ‘good death’ seemed more about philosophy than clinical care. There are another two chapters about end-of-life care for children and a mother’s account of the death of her daughter from Tay-Sachs disease.
Reading these essays will have no effect on your clinical skills, but it is good to be reminded of these other legal, social and philosophical views on end-of-life care. There’s plenty to think about here, although it is a little on the expensive side.
Roger Woodruff (November 2013)
ALZHEIMER’S DISEASE, MEDIA REPRESENTATIONS AND THE POLITICS OF EUTHANASIA
‘The ultimate aim—and hope—of this work is that it will infuse the euthanasia debate with a level of intellectual honesty, transparency and accountability that up until now has largely been missing.’ Great objective, but a big task, I would have thought. But that is the goal for Professor Megan-Jane Johnstone, who is Chair of Nursing at Deakin University in Victoria, Australia and is also a nominated Consultant (in Ethics and Human Rights) to the International Council of Nurses in Geneva.
This book is not about the pros and cons of euthanasia and physician-assisted suicide (it lands on neither side), but about the contorted, manipulated, political debate that is going on using conditions like Alzheimer’s Disease to stoke the fire.
Johnstone provides a description of the disease, including its variable course, and goes on to discuss media constructions and representations of it, described in the Foreword as ‘the best discussion yet available on metaphors, analogy, and the stigmatization or even demonization of the deeply forgetful.’ Johnstone discusses in detail what has contributed to the extraordinary success of the euthanasia activists—their political activity, using propaganda and fallacious reasoning, sophisticated marketing strategies, and much more. This is not to say the anti-euthanasia lobby has not been guilty of the occasional dirty-trick or lie, but what is laid at the feet of the pro-euthanasia people is staggering. Her catalogue of the use of the epidemic, military and predatory thief metaphors is illuminating. I particularly liked her classification of the kinds of narratives used to bolster the illusion that euthanasia is right—‘reassurance’, ‘uncertainty’, ‘helplessness’, ‘choice’, ‘control’, and ‘dignity’. Her analysis of what has appeared in the media seems objective, and at the same time is very worrying.
But I guess I’m biased, having seen thousands of patients dying with cancer whose greatest wish was to live a little longer, a wish so sincere that it would silence the activists who believe in beneficent euthanasia for any one with dementia; that is, if they listened.
So who should read this book? Certainly anyone with an interest in the debate about euthanasia, and in particular anyone who wants to make public comment. Starting with the moral philosophers, sociologists, politicians and other self-styled experts (beautifully categorized in the Foreword as the ‘hyper-cognitives’) who can emphatically address difficult questions like the legalization of euthanasia with certainty and conviction. Unfortunately, knowing all the answers, they are less likely to read it.
I hope Johnstone gets her wish—that euthanasia can be discussed in a more honest and sensible manner. Although reading some of the material in this book makes me worry that the debate has already been dragged down to the level of farce.
Roger Woodruff (December 2013)
THE LAW AND ETHICS OF MEDICINE
Essays on the Inviolability of Human Life
Oxford University Press, 2013
This book is about the ethical and legal principle of the inviolability of human life, and not some theological discussion. It is divided into three parts. The first is about the history, influence and misunderstanding of the ethical principle, the second discusses aspects of the beginning of life, and the last deals with a number of issues at the end of life.
I found the first section a bit heavy-going, as though it was written for academic lawyers, who in fact are the intended audience. I skimped on the second, but the third part (comprising fully a third of the book) was unputdownable. He provides in-depth but readable reviews of the debate about the decriminalization of euthanasia in the House of Lords, the report from the Council of Europe and there are commentaries on the Pretty, Purdy and Bland cases. In the chapter dealing with the Mackay Report (House of Lords), he describes the debunking of two popular myths—that the great majority of our communities are screaming for legalisation of physician-assisted death now, and that we doctors are doing it all the time in secret. Keown also comes up with numerous pieces of evidence (from material supplied with the Mackay Report) that might have significantly strengthened the case against euthanasia. The evidence obtained about practices in The Netherlands include some eye-opening quotes from Dutch doctors, such as:
‘it is the patient who is now responsible in the Netherlands for avoiding termination of his life; if he does not wish to be killed by his doctor then he must state it clearly orally and in writing, well in advance.’
‘Due consideration should be given to the question how termination of life without explicit request can be prevented. It should be the responsibility of the patients…’
His chapter on palliative care is about not wasting time and energy on the euthanasia debate, but focusing on the legal and professional reforms ‘needed to help the 90% or more of dying patients who will never even vaguely desire euthanasia,’ and includes pertinent discussions of whether palliative care is an ethical duty and a human right.
John Keown is well known in euthanasia circles. His previous contributions include Euthanasia Examined—An Argument Against Legalisation (1995) and Euthanasia, Ethics and Public Policy—Ethical, Clinical and Legal Perspectives (2002), both from Cambridge University Press, and Debating Euthanasia (Hart Publishing, 2011), and are all to be recommended. His attention to detail and clarity of thought are admirable, but he writes in a moderate and reasoned tone and in a manner easily understood whether you are a health care professional, lawyer, politician or just an interested member of the public. The Law and Ethics of Medicine is no exception and is recommended to anyone involved in the discussions about physician-assisted death and perhaps to those thinking about better strategies for advancing palliative care.
Roger Woodruff (November 2013)
Medicine and What Matters in the End
Metropolitan Books, Henry Holt and Company, 2014
I think this is a remarkable book for a number of reasons. It is medically accurate and believable (Gawande is a surgeon at Brigham and Women’s Hospital in Boston as well as a professor at Harvard Medical School and the Harvard School of Public Health), it is well written (he is a staff writer for The New Yorker), the arguments about what should and should not be our goals in caring for the aged and terminally ill are thoughtful and well constructed, and, most of all, because he describes the human foibles that we see every day in the real world, which can undo even the best-intentioned and careful end-of-life care planning.
Gawande’s thesis is that high-tech modern medicine often fails the elderly or those with terminal illness—people it is supposed to help. ‘The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit.’ Using some poignant biographical sketches of family members and a retired geriatrician, he describes the medical and societal changes of the last 50 years or so that have changed our attitude to and experience of aging and dying. He tells the story of the poorhouse, the aged care facility, the nursing home—‘designed to be safe but empty of anything they care about’—a trend perhaps interrupted by the advent of assisted living.
The last three chapters deal with terminal illness and include the tales of several memorable patients including Gawande’s own father with his cervical cord astrocytoma. Gawande paints a true picture of how the patients, their families, and their doctors stumble through the minefield of decisions and choices—sometimes getting it right, sometimes getting it wrong. Palliative care and home-based hospice are well described and their value demonstrated, although the point is made that hospice is often involved only in the last few days. And ‘Which funeral service do you want to use?’ is not a question I ask at the first visit. There is thoughtful discussion about how we should be communicating with these patients and their families, without being paternalistic or expecting patients to make decisions they are not qualified to make, but with guidance—the so-called shared decision making. But done right, it’s never easy.
For anyone who works in palliative care, this book provides a thoughtful discussion about the problems we encounter regularly that rings clinically true. And it’s enjoyable to read.
‘We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.’
Roger Woodruff (November 2014)
DYING IN AMERICA
Improving Quality and Honoring Individual Preferences Near the End of Life
Institute of Medicine
The National Academies Press, 2014
This Report, by an expert committee convened by the Institute of Medicine (IOM) of the National Academies is about the universal provision of comprehensive care, including hospice and palliative care, for people with advanced serious illness who are nearing the end of life.
The brief for the committee was daunting. To assess the delivery of medical care, social and other supports to the patient and the family; patient/family/provider communication of values, preferences and beliefs; advance care planning; health care costs, financing and reimbursement; and the education of health professionals, patients, families and the public at large. And to explore approaches to advance the field.
Not surprisingly, they concluded that the U.S. health care system is poorly designed to meet the needs of patients and their families at the end of life and that major changes are needed. However the report suggests that broad improvements in end-of-life care to make it compassionate, affordable, sustainable and high quality are within reach.
I was drawn to the more clinical issues, including advance care planning and how physician education might be changed to improve end-of-life care. For example, Recommendation 2: ‘Professional societies and other organizations that establish quality standards should develop standards for clinician-patient communication and advance care planning that are measurable, actionable and evidence-based.’ That would be a big step forward. In a New England Journal of Medicine Perspective, the co-chairs of the IOM committee note that 80 and 88% of American physicians surveyed in two studies indicated they would choose to forgo high-intensity end-of-life treatment (Pizzo PA and Walker DM: Should we practice what we profess? Care near the end of life. N Engl J Med 372: 595, 2015), and ask why we physicians are not helping more patients express their preferences so that they can make informed decisions about the care they want near the end of life. I liked the discussion of inadequacies in professional training, even going back to the ‘death is seen as a medical failure’ excuse.
Whilst this Report is written about and for the United States, many of the issues discussed are pertinent to other countries, both developed and developing. And there is a wealth of information and thought as the (long) list of problems and barriers is discussed.
The report can be purchased, or read free or downloaded as a free pdf file at www.nap.edu/openbook.php?record_id18748
Roger Woodruff (February 2015)
PALLIATIVE CARE AND ETHICS
Timothy Quill and Franklin Miller (eds)
Oxford University Press, 2014
Hospice and palliative care is alive with ethical issues and this book, with a commendable list of contributors, sets out to discuss them. The opening chapters discuss hospice and palliative care in general, and ethical issues arising from modes of delivery in particular. Following this are a series of chapters about ethical issues related to pain relief, dyspnea, delirium, and psychosocial and psychiatric suffering.
The nitty-gritty of the book is in the last section—Difficult Decisions Near the Very End of Life. There are good chapters on withholding and withdrawing life-sustaining treatments, voluntarily stopping eating and drinking, and on medical futility. Andrew Billings’ chapter on palliative sedation provides a good description of what we are talking about, where it fits in the ethical scheme of things, and underlines the responsibilities of the physician. The chapter on physician-assisted death by Quill and Miller left me dissatisfied and I did not agree that relieving a patient’s symptoms with treatment that you knew might hasten their death, but in no way intended, was the same as popping them off. The chapter on physician-assisted suicide by Ganzini was interesting but did not add any important new information. I was most interested to read that her proposal for a study on whether receiving a prescription resulted in reduction of anxiety and increased sense of peace (an interesting and worthwhile question) was blocked by the pro-PAS organisation.
The final chapter is about physician-assisted death in Western Europe, The Netherlands in particular. I ran into a few bumps here. She starts with the Dutch data that ignores intention, and follows with the European studies. The Australian study, conducted I believe according to the same Dutch criteria, was deceptive in its ambiguity: if you said you had given a patient medication that you knew might possibly shorten their life, although you had no intention of so doing, you were counted as having intentionally shortened the patient’s life. She tells us that ‘termination of life without request is declining since 1990.’ But the numbers stayed the same during the period 1990-2001, amounting to around one thousand patients a year, euthanased without request; the first significant fall was in the 2004 report. She tells us that palliative care services in The Netherlands are among the best in Europe, based on criteria such as attendances at palliative care conferences. She tells us that reporting levels for euthanasia have increased remarkably, but not that this is due to the fact that doctors no longer have to report opioid-related deaths because someone somewhere else in the world reported that opioids given appropriately were not associated with hastened death; that doesn’t apply if you give a lethal dose, intentionally. I didn’t see any mention of the recent rapid rise in the use of terminal sedation, which some have reported as being used in place of euthanasia (i.e. to intentionally hasten the death of the patient), because it doesn’t have any of the legal connotations of euthanasia.
Overall, this is a good synopsis of the range of ethical issues encountered in palliative care, including the delivery of services, patient suffering and physician-assisted dying. It will be useful in the postgraduate classroom and should be of interest to anybody working in palliative care. Just don’t believe everything you read about euthanasia in The Netherlands.
Roger Woodruff – February 2015
A Study in Ethics and Law
L. W. Sumner
Oxford University Press, 2014
L. W. Sumner is Professor Emeritus of Philosophy at the University of Toronto. This is his admittedly partisan contribution, from an ethical and legal perspective, to the debate about assisted death. I note he describes it as an ethical, social, political and legal debate—medical doesn’t seem to come into it.
The first section is about Ethics. He discusses refusal of life-sustaining treatment, followed by a long discussion about double effects, which he describes as ‘relieving suffering and causing death’. This is the first hole he digs for himself, referring to the treatment of patients with increasing doses of opioids as having a probable or certain chance of hastening death; foreseeing a possibility of hastening death doesn’t come into it. To his credit, he mentions that some maintain that appropriate doses of opioids do not shorten patients’ lives, but I’m not sure he believes it. The Australian study (and similar studies from elsewhere) is trotted out to show that doctors frequently use doses of drugs in terminally ill patients that may hasten death. I was sent a copy of that Australian study, which I failed to complete. The questions were deliberately ambiguous, so that doctors who admitted they had given a patient opioids that might possibly have hastened death (but of which they had no intention) were classified as having intentionally given doses of medications they knew to be lethal. Which is just the result the investigators wanted. Utter rubbish, but the results turned up on the front page of the Sunday newspaper. I can’t remember the headline, but it had to do with doctors and killing. Much is made by Sumner about how much a life might be shortened, perhaps to lessen the psychological impact if only a seemingly trivial amount of time is involved. The truth is that no one can know exactly how much a life is shortened by euthanasia, but the Dutch are notorious in this regard. I remember commenting in the mid-1990s on the euthanasia of a young man with AIDS whose life-expectancy using internationally accepted criteria, and using treatment available at that time, was in excess of two years. The Dutch said his life was shortened by less than a month, at the most.
The next chapter moves on to euthanasia and physician-assisted suicide that, from an ethical perspective, Sumner sees as no different from treatment with the possibility of hastening death. I do not agree. The physician’s job is to relieve suffering, and killing people is not an option. Intention is a big thing.
The last chapter in this section is about deciding for others—the formerly competent and the never competent. Sumner argues that where there are no advance directives and the patient is not competent, the principle of ‘acting in the patient’s best interest’ trumps all other considerations and is sufficient to make decisions about euthanasia. I definitely do not agree, and such an argument brings what happened in Nazi Germany back into the debate. Adopting such attitudes in a palliative care unit, or the geriatric or psychiatric wards, is to me unthinkable. As a doctor, I would consider doing a ward round thinking about who can or should be euthanased would constitute, to use the Dutch term, unbearable suffering.
Having argued to this point, I suppose Sumner has no reason to worry about euthanasia without request (one thousand patients a year in The Netherlands), euthanasia for treatable conditions like depression, or the recent marked rise in the use of terminal sedation in The Netherlands, which some report as being used as an alternative to euthanasia (i.e. for the intentional hastening of death) that does not carry any of the legal connotations of euthanasia.
Having satisfied himself that all forms of assisted death are morally permissible in given circumstances, the second half of the book is about legal matters, but I am not a lawyer and my interest had waned. I am sure Sumner will have come up with a means to make euthanasia legal, but not one to control it. Control was not a major issue in the ethics section.
The problem here is that the clear-cut theoretical case studies used are all very well for discussions held in ivory towers, but do not come close to covering the myriad variations (of patients, families, medical situations, and health care professionals, not to mention differing cultural values and beliefs) seen in the real-world ward or clinic. Sumner refers to people holding views opposite to his as having the Conventional View, although I was left wondering whether the capitalisation represented respect or the opposite. I also noted that in his discussions, the patient subject is always referred to as ‘her’.
This book is well written and I would recommend it to anyone interested in the debate about assisted dying. It’s just that I do not agree with some of the things it says.
Roger Woodruff (February 2015)
Translated by Mark Kyburz and John Peck
Columbia University Press, 2015
Monika Renz is a psychotherapist, music therapist, theologian and spiritual caregiver, with doctorates in both psychology and theology, who has been the head of psycho-oncology at the Kantonsspital St. Gallen in Switzerland since 1998.
Whilst most books dealing with palliative care cover a significant portion of the illness trajectory, Renz has taken a magnifying glass to the spiritual and psychological happenings in the last minutes or hours (days, at most), of patients’ lives. She studied more than 600 patients dying of cancer, recording what happened (or did not happen) after each therapy intervention or encounter, including things both verbal and nonverbal. Analysis of this data is the underpinning of her hypothesis that the dying undergo transition into another state of consciousness, or another way of experiencing being, beyond anxiety, ego and pain. I am not going to attempt to summarize her description of the nature and meaning of these transition processes. But it results in her recommendations about how we might provide better end-of-life care.
I found this book pretty intense, but very interesting. I frequently had to reread a paragraph to understand the real meaning, but I have to say that what Renz (and her translators) say is perfectly clear; perhaps it is that I am not used to thinking in terms of Jungian psychology at the bedside. I was impressed by the similarities to some of the topics discussed by Patricia Pearson in Opening Heaven’s Door, particularly regarding nearing death awareness and premortem serenity, although they are discussed here from a psychological, almost psycho-analytic, perspective. Many of the things she describes ring true, and perhaps this is a better way to describe and treat our dying patients. I would recommend this to anyone who works in palliative care and has an interest in the spiritual and psychological processes in dying patients, or anyone who simply wants to know more.
Roger Woodruff (November 2015)
THE PATIENT’S WISH TO DIE
Research, Ethics, and Palliative Care
Rehmann-Sutter, Gudat and Ohnsorge (eds)
Oxford University Press, 2015
This book is about terminally ill patients’ wishes that do not just cover the circumstances of their death, but include the wish for death to come. There is an emphasis towards the psychosocial and ethical aspects of care.
The first part of the book explores the state of empirical psychosocial research on wishes to die. Included here is the 2004 paper by Nessa Coyle and Lois Sculco on expressed desire for hastened death; a new afterword by Nessa Coyle provides interesting insight into the changes that have occurred (and are continuing) in palliative care practice over the last ten years. The second part provides four different perspectives on the ethics of practically responding to wishes to die. In the third section, practical issues are discussed as they are encountered in palliative care for patients at the end of life who express wishes to die.
If you want to know more about the genesis of wishes to die, and some guidance as to how we might best deal with them, both as individual healthcare practitioners and as a society, then you will find this book of interest.
Roger Woodruff (November 2016)
SEDATION AT THE END-OF-LIFE: AN INTERDISCIPLINARY APPROACH
Paulina Taboada (ed.)
The purpose of this book is to analyse several clinical, ethical, and legal questions related to the use of sedation at the end-of-life, also termed palliative sedation (PS). In her introduction, Taboada explains that it is focused on seven questions: is PS ethically different to euthanasia and physician-assisted suicide; is it necessary to invoke the principle of double effect to justify PS; is PS ethical in patients not imminently dying; are decisions about nutrition and hydration independent of decisions regarding PS; is PS appropriate for psycho-spiritual symptoms and existential suffering; is PS ethical for patients unable to give informed consent; and, are clinical guidelines for PS desirable.
I was impressed by the standard of the contributions to this book, which seemed thoughtful and well organised. The uniformity of presentation suggested good editing. Whilst considered answers are offered to some of the questions, an alternate view never seems far away. No one would argue about the minefield of different terms, concepts and definitions. Should there be indications for PS, or should it be based on the wider ‘goals of care’ that we use in palliative care? The question of PS for existential suffering raises further questions of how you define and assess that type of suffering. Much is said about the principle of double effects, which if used properly does differentiate PS from euthanasia; at the same time it is admitted that some uses of PS may in fact be intentional killing. When it comes to guidelines, one expert argues in favour, whilst another decries their use because they have a very negative effect on judicious medical decision-making.
I was particularly taken by the cogent arguments, by John Keown and others, regarding autonomy. “In spite of the undeniable importance of respect for ‘autonomy’, both for patients and also for health professionals, respect for autonomy should always be subordinated to the respect we owe to the ‘basic human goods’ of which the first and most important one is life itself.” Hear, hear! And it’s been known and believed for a long time—it’s not something that has just been discovered. But the parliamentarians in my home State of Victoria are much wiser and have passed legislation to legalize euthanasia and physician-assisted suicide for the sole purpose of giving the power of autonomy to the individual.
If you work in palliative care and are interested in the ethics of end-of-life care and palliative sedation in particular, this book provides a lot of information and even more to think about.
Paulina Taboada is from the Center for Bioethics and Department of Internal Medicine at Pontificia Universeidad Católica de Chile in Santiago, Chile. The other contributors, experts in bioethics or palliative care, were from Canada (8), Chile (2), and the USA (2).
I must again complain that Springer will not supply review copies of their books, and that I feel that reviewing e-books on line is very difficult and probably does not do the authors credit.
Roger Woodruff (December 2017)
DYING IN THE TWENTY-FIRST CENTURY
Toward a New Ethical Framework for the Art of Dying Well
Lydia Dugdale (ed.)
MIT Press, 2015
The Ars moriendi (‘The art of dying’) appeared in about 1460 after the Black Death (c.1340-1400) of bubonic plague had killed between one- and two-thirds of the population of Europe, and provided the layperson with guidance about the preparation for death according to the customs of the Church at that time. This book, with contributions from physicians, philosophers, theologians and bioethicists, asks what would be needed to create a contemporary Ars moriendi or ‘art of dying well’ in a society like the USA as it exists today.
Big questions are tackled. Recategorizing death from unmentionable to mentionable, even anticipated. Human finitude. What does and does not constitute a ‘good death’. Do hospice and palliative care provide an answer? The second part of the book deals with the substance of dying well—rituals and practices, spiritual preparation, and the role of community. The final section is about children, the elderly and demented, and people with HIV/AIDS.
I enjoyed this book, which I found informative, thoughtful and stimulating, but it wasn’t light reading. Bioethicists will lap it up, but it also asks questions that are relevant to the practice of palliative care on the ground today, such as what is meant by dying well, and how hospice and palliative care should be aiming to try and achieve that.
Roger Woodruff (November 2015)
DYING. A Memoir
Text Publishing, 2016
Cory Taylor is an Australian writer who has the great misfortune to have metastatic melanoma that is no longer responsive to therapy. This is her memoir, which I have to say is pretty clear-eyed and unsentimental.
Part of the book is a reflection on her personal and family life and her thoughts about the joys, the sorrows and the precariousness of life. The other is about what it means to be dying and her arguments for the right to choose the circumstances of her own death. Doctors and other health professionals get bad press for not talking about death and dying; religious beliefs (Christian, at least) are declared irrelevant; but her stash of (illegally imported) suicide medicine and the regular meetings of her local branch of Exit International, fare much better. The only thing stopping her, she says, is guilt about the selfishness of suicide and the collateral damage it may cause her family.
I was both provoked and disturbed reading this book. My objection to the legalisation of assisted dying has nothing to do with religious beliefs, but I find the attitude of the new sectarians, who apparently know everything there is to know about human suffering and insist that anything to do with any religious belief be banned from the discussion, to be both inappropriate and intolerant. The problem with legalised assisted dying is that it implies that every doctor will make the perfect decision, every time. But doctors are human.
Roger Woodruff (August 2016)
CONVERSATIONS ON DYING
A Palliative Care Pioneer Faces His Own Death
Dundurn Press (Toronto), 2016
Well-known Canadian palliative care physician, Dr Larry Librach, died of pancreatic cancer in 2013, aged 67 years.
This is the story about his terminal illness, put together by author and journalist, Phil Dwyer. It includes some jewels about doctor-patient communication, the meaning of families, being at home, being a burden, hope, and a lot more. ‘Larry had spent a lifetime teaching others that the best way to deal with this particular unwelcome guest [a terminal illness] is to acknowledge him, invite him into the circle, and address him openly. Share the doubts, the fears, the tears.’
There are also some pertinent comments about physician-assisted death. As a physician, he was against it; as a patient, he was against it. But when running CHPCA, he set up a working party to look at the issues, and I think came to the conclusion that the tiny number of patients who could never be satisfied by the best that palliative care could offer, would result in the legalisation of physician-assisted dying.
Larry’s story is interspersed with Dwyer’s recollections of his own brother’s terminal illness—he died of throat cancer in the UK in 2010. Despite all that we hear about the wonderful Macmillan Nurses and the fantastic system of hospices and palliative care, the system of palliative care in Manchester described by Dwyer is woeful; neglect and disinterest are words that come to mind.
Another fact that raised my eyebrows. ‘If you die in Canada today, it is much more likely than not that palliative care won’t be available for you. Between 70 and 84% of all Canadians die without receiving, or having access to, palliative or end-of-life-care services.’ So they are introducing medically assisted dying when only 16-30% of the population have access to palliative care?
I enjoyed this book, which has lots to think about.
Roger Woodruff (February 2017)
CONTINUOUS SEDATION AT THE END OF LIFE
Ethical, Clinical and Legal Perspectives
Sigrid Sterckx, Kasper Raus and Freddy Mortier (eds.)
Cambridge University Press, 2016 (pb)
This book and I did not get off to a good start. It was advertised on amazon.co.uk as being newly published in December 2016. There was no mention that it had appeared as a hardback in 2013. But I didn’t even get the paper edition; I was told to make do with the e-book, which I think makes the job of renewing doubly difficult. To cut a long story short, I wasted a lot of time dealing with stuff written for geeks, but was unable to download the book. When I tried a fourth time, the site snapped into action and told me I had used the maximum number of attempts allowed, and that I must report immediately to Cambridge University Press.
But this is meant to be about their book. In the introduction, on p 3, I read ‘Suffice it is to say in 2004 Serge suffered a ‘grand mal’ (type of epilepsy) that was caused by a frontal brain lesion and by lung lesions that were treated by craniotomy.’ I felt troubled. Lung lesions rarely cause epileptic seizures, and lung lesions are definitely not treated by craniotomy. It goes on to say, ‘It is absolutely certain that, without the benefits of [continuous sedation], Serge would have died a horrible death.’ I thought that statement was utter rubbish. I was losing patience.
Sterckx and Mortier are professors of ethics at Ghent University in Belgium; Raus is identified as a postdoctoral researcher at the same university.
The opening chapter, written by the three editors, is long-winded and repetitive to the point of being tedious. They were at pains to emphasise how controversial continuous sedation was, but it seemed like a lot of hot air to me. I realised that I had never considered how professors of ethics fill their working week. The chapter ends with a review of the content of the other 14 chapters. But instead of providing a short, sharp synopsis of each contribution, they attempt to summarise everything each author says, cross-referencing what was said by any of the other 13 on any particular point. I thought it was a useless mess that ground on for 11 pages.
The message that I got from skimming some of the other chapters was that there was absolutely no consensus about terminology and definitions, and that there were an almost unlimited number of clinical variations, which meant that no two people using the words ‘continuous sedation’ or ‘palliative sedation’ were talking about exactly the same thing, and that meaningful comparison of different reports was not possible. There were a number of good contributions about these variations and, viewed from a slightly different angle, they provide insight into the myriad considerations involved with terminal sedation. There were also a few contributions raging about the controversial nature of the subject (mainly from ethicists). The best chapter was by Dr Nigel Sykes from St Christopher’s Hospice in London, who provides a clinically sensible description of the history of sedation in palliative care, what benefits it brings, cuts across the business of artificial hydration and nutrition (they are not relevant in appropriate patients), and really asks what all the hype and rage (by ethicists) is about.
The last chapter is by Margaret Battin, a professor of philosophy from Salt Lake City. A vocal advocate of physician-assisted dying, she seems to be expressing concern about terminal sedation that, ‘once the process has begun, the patient no longer has a way of controlling the course of events on the way to death.’ I felt a bit confused.
I remain concerned that the almost meteoric rise in the use of terminal sedation in The Netherlands represents euthanasia in disguise, and has the advantages of being free of the administrative hassles and legal risks associated with euthanasia. That sedation is being used to shorten life is addressed in several of the presentations in this book, but I could not find any quantitative estimates; however, in Griffiths et al Euthanasia and Law in Europe (Hart Publishing, 2008), there is a statement to the effect that Dutch doctors reported that in 50% of cases in which palliative sedation was employed, the intention was to shorten the patient’s life.
Roger Woodruff (May 2017)
THE OXFORD HANDBOOK OF ETHICS AT THE END OF LIFE
Stuart Younger and Robert Arnold (eds.)
Oxford University Press, 2016
This book comes not that long after Palliative Care and Ethics (Oxford University Press, 2014). However, the earlier book was very focused on palliative care, and had the advantage that the majority of contributors were medically (or nursing) qualified, which I feel leads to much more meaningful and clinically applicable discussion. The present volume takes a much wider purview of end of life issues and includes contributions from bioethicists, lawyers, sociologists, and philosophers, with a much smaller proportion medically qualified. As I have got older, I have become less tolerant of the Professors of Philosophy who pontificate from their ivory towers about clinical matters of which they have zero practical experience; the noise they make is really just a pain.
The first section is about clinical and legal issues, and covers an interesting range of topics. I tripped up on the report from Holland about continuous sedation at the end of life, written by an ethicist and a philosopher. There are pages about double effects and other extraneous matters. I don’t have a problem—a dying patient has intractable suffering, only way to relieve suffering is by sedation, use sedation. Yes, you can invoke the principle of double effect if you want. But what is not even mentioned in the article is the use of terminal sedation to hasten the patient’s death, which has been reported by the Dutch themselves. In other words, it is euthanasia in disguise, and has the advantage that it doesn’t have to be reported to authorities.
The second section is about theoretical, cultural and psychosocial issues. Eric Cassell on The Nature of Suffering and David Barnard’s On Our Difficulties Speaking to and About the Dying were a pleasure.
Section III is about physician-assisted death. The chapter on The Netherlands is written by Gerrit Kimsma, Professor of Metamedicine at Vrije Universiteit; I had never heard of Metamedicine, but a Google search informed me that conventional medicine does not know the cause of 99% of illnesses, but Metamedicine had all the answers, and for a large fee would be of value to complementary practitioners, chiropractors and homeopaths. As previously (Younger and Kimsma, Physician-Assisted Death in Perspective, Cambridge University Press, 2012), he describes the long legal, professional and political struggles that have resulted in a wonderful societal emancipation. But he only tells the fraction of the truth that is convenient. What about the unreported cases? They can tell you how many cases of euthanasia are reported, but have no clue how many go unreported, especially now that euthanasia using opioids does not have to be reported. What about the meteoric rise in the use of palliative sedation? It’s just ‘normal medicine’; not if, as reported by the Dutch, it is being employed to hasten death (‘euthanasia in disguise’). What about euthanasia without explicit request (a thousand patients a year)? Observational studies cannot be used to prove that physicians (who euthanased patients without request) were right or wrong. What about the common failure to obtain the independent second opinion required by law? Not discussed. I remain totally unconvinced that they did a good thing or that they have got it right.
Ira Byock’s The Case Against Physician-Assisted Suicide and Euthanasia was a breath of fresh air.
The article by Margaret Battin (Distinguished Professor of Philosophy at the University of Utah) is entitled Goodbye, Thomas. After her previous diatribe (Battin, Ending Life, Oxford University Press, 2005), this is a mere six pages. It says her arguments for physician-assisted dying are indisputable, there are no valid arguments against, and that anyone who thinks that way is hung up on the thirteenth century thinking of Thomas Aquinas (1225-1274). The rejection of suicide by Aquinas way back then would not have included the sort of decisions involved in 21st century end of life care, and I thought the association somewhat farcical.
The last section is about the emergence of palliative care and includes a good
review by David Clark and Robert Arnold’s Potential Perils to the Promise of Specialty Palliative Care.
Good book. Just don’t believe everything you read about euthanasia in The Netherlands. And be wary of Professors of Philosophy.
Roger Woodruff (March 2017)
Fourth Estate, 2017
Nikki Gemmell is a successful Australian writer with a string of novels and children’s books to her credit.
This book is about the tsunami of emotional, psychological and physical problems after her mother ‘euthanised’ herself; Gemmell doesn’t like ‘suicide’ because it implies the unhinged and irrational. Gemmell’s mother had problems with intractable, unresponsive pain, which left her dependent and crippled.
Gemmell’s relationship with her mother was tumultuous. ‘If I had my life over I never would have had kids,’ her mother said. Later in the book, the daughter admits that she wished her mother dead at times. Interestingly, Gemmell notes that un-maternal mothers do exist, but says they should not be judged. And despite the years of antagonism, she feels no relief after her mother’s death; she describes her life as hell. The abandonment. We didn’t listen enough. The words unsaid. Everything is upended. Catapulted into crisis. ‘With her final act [mother] has altered my future. She has been attempting to do this since my teenage years…But finally, with this…she has crushed me.’
Philip Nitschke, long-time advocate of euthanasia and assisted dying tells Gemmell that her mother contacted his organisation Exit International and that she had (illegally) imported nembutal. He describes this as empowerment. And he adds that anyone opposing his views is either not mature or is suffering ‘religious claptrap’.
Gemmell wrote about these issues in her weekly column in the national newspaper The Australian, and was inundated with responses. A selection of these is presented in the book, providing pithy insights into the problems with laws and with the medical system. Like the woman who said her husband’s advanced cancer ‘threw him into the willing arms of the medical fraternity who don’t know when to stop.’
Gemmell goes on to provide what I thought was a reasonably balanced discussion about assisted dying. Coming from the autonomy/choice position, she comes to the conclusion that assisted dying should be legalized, stating that the embracing of individual choice is the mark of a mature nation. ‘If the perpetrator’s family cannot, by law, be involved in the wishes of the person wanting to die, you are condemning that person to a horrendously bleak and lonely death. And there will be many people left reeling in the wake of that death.’
I don’t necessarily disagree with those sentiments, but I will never support the legalization of assisted dying because of what it brings with it. In every jurisdiction where assisted dying has been legalized, there has been disregard for the laws and safeguards that were put in place to prevent abuse and misuse of these practices. I have concerns that the majority of the medical profession are not adequately trained to formally assess decision-making capacity, and lack the psychiatrist’s skills to make sure no patients with treatable conditions like depression go down the assisted dying path (and that includes me, on both counts). Many doctors cope poorly with severe pain or suffering and rapidly resort to the ‘nothing more can be done’ position, which is half way to assisted dying. How can you be sure the person is not being pressured by family or socioeconomic issues? How do you manage people who feel a burden or who are ‘tired of life’? Where do you draw the line? ‘Euthanasia creep’ is inevitable—when legalization of assisted dying for a very limited group of people in very limited circumstances is expanded to include more people in more situations. In the words of Robert Twycross: ‘Once the barrier of legislation is passed, medically assisted dying takes on a dynamic of its own and extends beyond the original intent, despite earlier explicit assurances that this would not happen.’ Or Herbert Hendin: ‘Virtually every guideline set up by the Dutch—a voluntary, well considered, persistent request; intolerable suffering that cannot be relieved; consultation; and reporting of cases—has failed to protect patients or has been modified or violated.’ Remember the one thousand patients a year that were euthanased without request, never mind consent, in the Netherlands? Now the Dutch doctors say that in 50% of the cases where palliative or terminal sedation is used, the intention is to hasten the death of the patient, i.e. it is euthanasia. The Belgians have championed the cause that euthanasia is a normal part of palliative care, and there are now moves afoot in Canada to censure any palliative care service that declines to provide assisted dying.
Gemmell’s book is excellent and I had trouble putting it down. It is a dreadful story and extremely personal. But she writes so well and the emotional aspects of the turmoil are vividly portrayed. I would happily recommend this book to anyone who works in palliative care. You will be drawn into her story and it provides a raft of issues on which to reflect—where the current system doesn’t work, where it’s doing harm. On the legalization issue, Gemmell and I start from different positions and with different data and, not surprisingly, come to different conclusions. Again, lots to think about.
Roger Woodruff (June 2017)
TIME TO DIE
Melbourne University Press, 2017
Rodney Syme is a urological surgeon in Melbourne, Australia. He has been an advocate of medically assisted dying for many years, working with the Voluntary Euthanasia Society of Victoria, now re-branded as Dying With Dignity Victoria.
Syme opens with the story of an unfortunate individual who died of laryngeal cancer. As it is described, his written advance directives were disregarded and he of course had unrelieved pain, suboptimal symptom control and suffered significant side effects of the medications he received. We are told repeatedly that this occurred under the care of a Catholic palliative care team in a Catholic hospice. In this and the other tales of woe, his language is dramatic, wringing every last emotional drop from his stories: suffering was always intolerable and unrelievable, no symptoms responded to therapy, etc, etc. But anyway, hard cases are said to make bad law.
He implies that vast numbers of people are now requesting medically assisted death (‘the momentum’), which I dispute. In my practice as an oncologist and palliative care physician, I have dealt with at least ten times the number of patients with advanced disease that Syme has seen and I have never received one request for assisted dying; and, no, patients were always given plenty of opportunity to ask anything they wanted. I wonder whether the polls reported are based on asking people whether they want their loved ones or themselves to die in agony or vote for assisted dying; if that were the situation, I would probably vote for euthanasia.
In his discussion of palliative care, Syme states that it ‘is one of the most important developments in modern medicine’, but this is followed by ‘there is scant evidence to support the effectiveness of specialised palliative care for patients with terminal illness in terms of quality of life, patient or care giver satisfaction, or economic cost.’ Sounds a bit contradictory to me, but I think Syme feels assisted dying trumps palliative care every time. A more sinister thread comes to light in this chapter—that he believes it is the strong religious beliefs of some of the pioneers in the field of palliative care (Christianity, Catholicism in particular) that is preventing palliative care associations and the profession in general from embracing assisted dying; having worked with several of the individuals named, I found this quite disrespectful. He also says it is hypocrisy to oppose assisted dying whilst employing terminal sedation, which I think he regards as a slow and somewhat clumsy form of assisted dying.
Syme’s discussions of dignity, vulnerability and burden are predictably slanted to his obsession for assisted dying. With regard to autonomy, Syme states that all doctors have a fundamental and overriding legal and ethical duty to respect patient choice—if they ask for assisted dying, there isn’t any discussion; I do not go along with that. As noted recently in this column, there is a good paper written by two Australian psychiatrists, Brian Kelly and Francis Varghese, The Seduction of Autonomy: Countertransference and Physician Aid in Dying, which is a careful examination of the innumerable psychological issues and interactions involved with requests for assisted death and makes an absolute nonsense of yes/no attitude of our politicians (and Syme) towards patient autonomy and the right to assisted dying.
Interestingly, Syme finds euthanasia by lethal injection ‘distasteful’ and claims he would never do it. Making a date and time to give someone a lethal injection would be ‘unconscionable’. But…well…if there was a question about ingesting or absorbing the medication, or paralysis,…then it would be OK.
Much of the last part of the book is about the legislation to be brought before the parliament of the State of Victoria to legalise medically assisted death. Syme thinks the proposed guidelines are excellent, although he would spread the net to include patients with ‘advanced incurable illness’. In contrast, I think the guidelines are vague, clinically impractical and open to abuse. [www.parliament.vic.gov.au/file_ uploads/LSIC_pF3XBb2L.pdf].
The other issue with the guidelines, which is not discussed by Syme, is that doctors, like patients (and politicians, perhaps), are human. They vary. Some are good, some are less good. There are good ones who have bad days. There are some who cannot cope with a lot of pain and suffering and resort quickly to the ‘nothing more can be done’ position, which is half way to assisted dying.
Reading this book and the parliamentary report, I am flabbergasted that there is no mention of any problems with assisted dying in The Netherlands. Not whether some patients benefited, but the widespread abuse of the system. No one knows exactly how many cases of assisted dying are not reported, but it is believed to be significant. There is no mention that Dutch doctors often do not consult a colleague for a second opinion, even though it is required under the law. There is no mention that when voluntary euthanasia for terminal illness was condoned, Dutch doctors performed euthanasia on patients with psychiatric illnesses and mental handicap. There is no mention that throughout the 1990s, about one thousand patients a year were euthanased without request, never mind consent. Over the last few years, the number of patients undergoing euthanasia has continued to increase (5500 in 2015), in addition to which there has been a dramatic rise in the use of terminal sedation. Deaths involving palliative/terminal sedation jumped 150% in the five years to 2010. It has the advantage that it does not have to be reported to authorities and doctors have admitted they are using it to end patients’ lives (i.e. ‘euthanasia in disguise’).
This is an important book, and I do not doubt Syme’s sincerity for one moment. I agree with him that people in our society want and deserve better dying. I think that this involves things like health professionals talking more honestly about death and dying, getting people to think in advance about what they want (‘having the conversation’—100% of them are going to die), and trying to limit futile therapy that simply prolongs suffering. I disagree with Syme that handing out lots of suicide sachets of Nembutal will fix the problem and worry that it may bring a whole lot of new problems.
Roger Woodruff (February 2017)
COMMUNICATION AND BIOETHICS AT THE END OF LIFE
Real Cases, Real Dilemmas
Lori Roscoe and David Schenck
Springer International Publishing AG, 2017
199 pp, hardcover; also available as an e-book
This is a collection of 16 real-life cases exploring the complex range of issues inherent in end-of-life medical care. The authors are at pains to emphasise how complicated things can get, although I doubt anyone reading this Newsletter needs any convincing.
It is divided into three sections. The first deals with complex issues related to pregnancy, newborns, and young children—the woman dying of tongue cancer who was pregnant, young parents facing difficult decisions regarding treatment for neonates with congenital abnormalities that may be further complicated by religious or cultural views, the 4-year-old with incurable cancer whose parents insisted on on-going intensive therapy, and a story involving post-mortem sperm retrieval. In each, there is the clinical history and a list of suggested discussion points, followed by two critiques—one focused on the ethical problems, the other on communication issues.
The second section concerns issues related to family involvement in decision-making—the woman who refused to believe that her young daughter was brain dead and that her life support could be discontinued, the mother of a young man with widespread colon cancer who forbade the involvement of the palliative care team, the 25-year-old woman dying of cardiomyopathy whose advance directive was successfully contested by her schizophrenic mother, and several more grievous tales.
The last section is about autonomy and balancing benefits and burdens—the Jehovah’s Witness who refused permission for his fiancé to be transfused when surgery was unexpectedly complicated by haemorrhage, to treat or not to treat a man with advanced head and neck cancer, the alcohol- and drug-abusing man with life-threatening infection and the patient’s right to treatment, and the man who had cared for his disabled wife for many years until he became depressed and unable to continue his caring due to self-neglect.
Based on the multiplicity and magnitude of difficulties, all the stories here score nine or ten on a scale of ten. What about the 19-year-old Hindu girl rendered quadriplegic and ventilator-dependent in an automobile accident, whose uncle told the medical staff that in their culture it is the family and not the patient who makes decisions, and that the life support should be stopped because her injuries were a result of bad karma from a previous life? In the end, I wished the authors had turned their blowtorch on the sort of problems we see everyday in palliative care: Mr or Mrs Ordinary with a single major issue.
In the introduction, it is noted that 20% of Americans live in a state where physician-assisted suicide is legal, but euthanasia and physician-assisted suicide do not get a mention after that, which I thought was an important omission. Dealing with the communication and ethical issues associated with physician-assisted dying will be one of the big challenges of the next ten years.
I found the text heavy going in places, but if you work in palliative care you will benefit from reading the stories and asking ‘what went wrong?’ and ‘what could have been done better?’ I thought the critiques provided good insight into how the experts think about these issues.
Lori Roscoe and David Schenck are from the University of Southern Florida in Tampa.
Roger Woodruff (March 2018)
EUTHANASIA AND ASSISTED SUICIDE
Lessons from Belgium
Jones, Gastma and MacKellar (eds.)
Cambridge University Press, 2017
363 pp, softback; also available as an e-book
This volume aims to provide an overview of Belgian euthanasia, including the legal, philosophical, bioethical, and clinical aspects.
As far as the system is concerned, we are told the law is reasonably strict, bit it cannot be regulated or policed. The system relies on self-reporting, but only about 50% of cases are reported. Then there is the second consultation, but there is no legal requirement for there to be unanimity of opinion. There are currently calls to legalise life-ending without request.
The Belgian data show there is a continuing rise in the number of patients having euthanasia each year, and the indications have been increased to include the psychiatrically ill and patients with non-terminal conditions. In the words of one commentator, ‘The indications for euthanasia are constantly multiplying, despite the legislators’ initial statements and intentions.’ Sterckx and Raus report that continuous sedation until death (CSD) is used where there is personal, family or institutional reluctance regarding euthanasia. It is also noted that CSD was initiated without consent or request, either of the patient or of the family, in 28% of cases.
A more sinister aspect of Belgian euthanasia is that in just 12 years, it has gone from an exceptional act to the norm (the ‘normalisation’ of euthanasia); then it became a right— there is information in official documents and in the media regarding a ‘right to euthanasia’. Following which, supply creates demand.
I crashed when I came to the chapter on palliative care. I knew the Belgians believed that euthanasia was an integral part of palliative care, but I was surprised when I was told the caring practice of ‘euthanasia accompaniment’ (euthanasiebegeleiding) is now part of the daily work of palliative care professionals. Then I think I was told (by someone sympathetic to euthanasia) that when euthanasia was introduced, palliative care professionals saw the limitations of palliative care (compared to euthanasia), ‘which convinced palliative care professionals that euthanasia could be part of genuinely good care.’ And that ‘palliative care was not harmed but strengthened’ by the introduction of euthanasia. I note the 2014 review of the integrated model (one co-author of which was Dr Distelmans) as giving Belgium a guiding role for the rest of the world.
I struggled with the chapter on euthanasia for children. The author went to lengths to tell me what a monumental amount of work and thought had gone into this. I noted the criteria quoted for psychosocial development were dated 1968, and those for cognitive operations 1971. The neuroimaging stuff is unconvincing and I think it will be a number of years before fMRI (or anything else) will be able to tell you if a particular child has a clear concept of dying and death. I found the statement about children with serious illness sensing their own mortality and therefore having a sense of death, quite sinister. It’s a bit like saying: This child is going to die, therefore he has good insight into dying and death.
The chapter by oncologist Benoit Beuselinck was much better. He noted that requests for euthanasia were very uncommon with the cancer patients in his clinic and pointed out the problems for palliative care (patients in need of palliative care support are reluctant to be referred for fear of euthanasia), and concludes that ‘the legalisation of euthanasia has put a burden on doctors, families, palliative care services and has put in danger the patient’s own life.’
The discussions about managing patients with psychiatric disorders left me confused. On the one hand they talk about the difficulty differentiating ‘between a death wish that is merely a symptom of depression, and one that can be canonised as an expression of free will’ Euthanasia advocate Dr Distelmans believes such distinction can be performed in an objective manner. But I wondered if it mattered, as they said they adhere to the directive of the Dutch Association of Psychiatrists ‘that stipulates that in cases of chronic depression, a wish to die can become durable and should be considered the expression of the well-considered rational choice of the patient.’ Dr Distelmans is the co-chairman of the Federal Euthanasia Control Commission and is said to be convinced that euthanasia should be seen as a form of suicide prevention. I also learned from Google that he conducts study tours to the Nazi death camp, Auschwitz, which he describes as ‘inspiring’.
There was an undertone of arrogance and insensitivity that I did not like. One commentator, Willem Lemmens, asked why ‘none of the pro-euthanasia experts ever seems to consider the possibility that there might be something wrong with a law that creates such emotional and existential havoc.’ When there was a public outcry by some (adult) children who had not been informed prior to their parents’ euthanasia, two euthanasia experts publicly declared them to have ‘pathological mourning’ and to be in need of psychiatric care.
This book provides a thought-provoking look at what has gone on in Belgium, with an appropriate variety of perspectives and opinions. If you have an interest in the assisted dying debate, this is important reading.
The three editors work in the bioethics field in the UK.
And what do I think about the Belgian euthanasia experiment? Nothing good.
WITH THE END IN MIND
Dying, Death and Wisdom in an Age of Denial
William Collins (HarperCollins) (UK), Little Brown (USA), 2018
ISBN 978-0008245597 (UK), 978-0316504485 (USA)
Dr Kathryn Mannix is a Palliative Care consultant based at the Royal Victoria Hospital in Newcastle upon Tyne. It sounds as though her specialist career started in oncology, after which she moved into the new discipline of palliative medicine, a career path that seemed remarkably familiar to me. Having qualified as a Cognitive Behaviour Therapist in 1993, she started the UK’s first CBT clinic exclusively for palliative care patients.
At the outset, Mannix bemoans the lack of talking about death and dying in the second half of the twentieth century. And then it’s down to business: ‘It’s time to talk about dying. This [book] is my way of promoting the conversation…My weapon of choice for this campaign is stories…stories about normal humans, dying normal human deaths...’
The book is essentially made up of 30 clinical stories of people at or nearing the ends of their lives, ‘and the intention is to allow the reader to experience what happens...how they cope; how they live; what matters most; how dying evolves; what a deathbed is like; how families react.’ The stories are grouped under six headings and gradually progress from more objective things (physical changes, patterns of behaviour, and dealing with symptoms) to more abstract concepts like making sense of human impermanence, assessing what has truly been important to a given individual, and our legacy. Written primarily for the lay reader, there is a little explanatory introduction to each story and a short critique at the end of each section.
I thought the stories were well chosen and well told. I enjoyed reading them and learned a little bit about CBT along the way.
I wholly agree with what she is doing, but how do you get the masses to read this type of book, how do you get them to talk about death and dying? Many health care professionals go out of their way to avoid talking about death and dying, and the patients and their families see evidence of miraculous breakthroughs in medical science every night on the TV news.
Anyone who works in palliative care will find this book enjoyable to read and there are a large number of clinical issues to ponder. Whilst I could argue that we as a profession should be somehow advocating this book, it is difficult to know how to go about it.
When I did a little research into Dr Mannix’s background, I came across some comments she made at the time of the euthanasia debate in the House of Lords (The Gaurdian 12 October, 2005). ‘The bill to legalise assistance with dying arises from the argument that to deny assistance is to deny the autonomy, or right to choose, of an individual. Proponents describe this denial as dehumanising, as though exercise of autonomy alone is the mark of human personhood. The humanising aspect of choice is its potential for nobility: as humans, we can reflect on our being and on the consequences of our choices. The right to choose to die with medical assistance, when placed in this context, must be weighed against the nobility of relinquishing this right if its commission would damage other, possibly more vulnerable, members of our society.’ I liked that, and it reflects the same clarity of mind evidenced in her book. But I was writing this during the week that the parliamentarians in my own State of Victoria legislated to approve physician-assisted death and euthanasia, although I suppose words like those of Dr Mannix would have gone straight over their heads. Now the leader of the federal Greens, a medical practitioner who dumped medicine to go into politics, is loudly championing the cause for the legalisation of euthanasia in all Australian States and Territories.
PHYSICIAN-ASSISTED DEATH: SCANNING THE LANDSCAPE
Proceedings of a Workshop
English, Liverman, Cilio and Alper, Rapporteurs
National Academies Press, 2018
Can be downloaded free at www.nap.edu/25131
Whilst this is certainly the most important palliative care book that crossed my desk in the last month, it is also the most disturbing.
After an introductory chapter, there is discussion of conceptual, legal, and ethical considerations in PAD. A number of important issues are discussed, including the difficulty in determining that a patient’s life expectancy is less than six months, how best to assess capacity and competence (in distinct contrast to what happens now), the contradiction between the proponents who demand PAD in the interests of all the patients with unrelievable pain and physical symptoms and the Oregon patients who pursue it because of existential and not physical reasons, and the concern that no safeguards enacted or proposed to date will be able to stop some people’s lives from ending without their consent through mistakes, coercion, or abuse.
Kim Callinan, CEO of the pro-euthanasia organisation, Compassion and Choices, waved the civil liberties/human rights card and I felt there was a little indignity that anyone might not agree with her; she chided those who sought to make the request process any more onerous. She provides no useful discussion about why opinion polls show the majority of people are in favour of legalisation of euthanasia, but (in Oregon) only a tiny, tiny fraction request PAD for themselves. She doesn’t mention that only a fraction of the physicians who support legalisation say they might be willing to participate in doing it. Lastly, she trots out the prevention of suicide business, and ignores the evidence from Oregon and the Netherlands that the rates of non-assisted suicide have gone up since the legalisation of assisted suicide. I cheered when one participant questioned whether it was appropriate for an advocacy group to attend a scientific meeting.
The next chapter is mainly about PAD in Oregon. Linda Ganzini provides an overview of what has happened over the last 20 years, but I thought she dodged some important issues, depression in particular. There are concerns that significant numbers of patients with potentially treatable depression are getting PAD, but she maintains the incidence of depression is very low based on her study in which social workers (not physicians, never mind psychiatrists) were asked to give a gut-feeling score for depression on a scale of 1 to 5, without bothering to use any of the clinically validated instruments for the diagnosis of depression.
The scientific discussions were again suspended, this time for someone else from Compassion and Choices, to emotionally relate the unfortunate tale of his 29-year-old wife who was diagnosed with glioblastoma multiforme, which led to them moving to Oregon and her dying by assisted suicide. He decries the use of the term ‘suicide’, which he says is insulting. And I note he says all PAD deaths are ‘gentle, peaceful’, whilst all non-PAD deaths are ‘struggling and in pain’. Perhaps he doesn’t know that the Dutch reported that 18% of attempted assisted suicides had to be ‘finished off’ with euthanasia by injection. Perhaps he hadn’t heard about what happened with the seven patients in Oregon who regained consciousness after taking a lethal dose of medication, never mind the poor fellow who woke up after three days and lived for another three months.
Chapter 4 is about PAD elsewhere in the world, mainly in the Netherlands. Bregje Onwuteaka-Philipsen spins the party line that the numbers are low and haven’t changed much and it’s all under perfect control. But between 1990 and 2015, deaths from euthanasia, PAS and termination of life without explicit request have increased from 2.7 to 4.9% of all deaths; between 2001 and 2015, the use of continuous sedation until death jumped from 5.6 to 18.3% of all deaths; and since 1990, there have been of the order of 18,000 cases of termination of life without request and they are still going strong with more than 400 cases each year. She avoids talking specifically about all the cases in which intensified treatment of pain and symptoms, withholding or withdrawal of therapy, or continuous sedation until death were performed with the explicit intention of hastening death.
A presentation by an anthropologist who studied euthanasia in the Netherlands paints a glowing picture of the time taken and devotion shown by Dutch physicians when it comes to euthanasia: ‘Euthanasia in the Netherlands involves discussions taking place over weeks, months, and sometimes years and does not largely focus on the final day itself.’ But a Dutch report I read stated: ‘The period of time between the first discussion [of euthanasia] and the actual administration varied from less than a day to…’ i.e. same-day service.
Chapter 5 discusses implementation and practice of PAD, and includes interesting discussions of the societal, institutional, professional and personal responses to PAD.
The one on which I choked was from ‘a recognized expert in palliative care, bioethics and health care communication skills’, who said that palliative care teams can be fully participatory in programs of PAD. This is the model promoted by the Belgians in which euthanasia is seen as an integral and necessary part of palliative care. I have great trouble comprehending this approach and believe what they are calling palliative care and what I call palliative care are different things. Over the years, I have repeatedly been impressed when one or other members of the palliative care team has made that extra effort, gone the extra mile, to deal with a patient’s suffering. But that will never happen if it is likely (or possible) that the patient will have euthanasia in a week’s time.
Chapter 6 discusses physician-assisted death in the context of other long-term support systems available to patients and the last chapter highlights some of the ideas and questions put forward.
This book has a lot of good material, in addition to the twaddle I have picked on. But what disturbed me most was that it seemed to be about ‘how to do it’ (access, voluntariness, competence, etc.) rather than ‘should we do it?’ What happened to intelligent debate about the limits of autonomy?
Get it and read it! It’s free.
Roger Woodruff (September 201
ETHICS IN PALLIATIVE CARE
A Complete Guide
Robert C Macauley
Oxford University Press, 2018
548 pp, paperback
Robert Macauley is the Cambia Health Foundation Professor of Pediatric Palliative Care at Oregon Health and Science University.
The book is divided into five sections. The first is a general overview and introduction that includes a description of the evolution of the field of clinical ethics. The second is Ethical Issues in Determining the Plan of Care, covering things like autonomy, advance care planning, surrogate decision-making, and code status. The next is about Death and Dying, which takes up one-quarter of the book and which attracted most of my attention. The fourth is about Pediatric Ethics and Palliative Care. The last is collection of other topics including palliative care for dementia and neurodegenerative disorders, organ donation, and the clinical practice of palliative care. Macauley refers to physician-assisted dying (PAD); I shall continue to call it what it is—physician-assisted suicide (PAS).
I got caught up in the section on Death and Dying. There were long (but accurate) discussions of most aspects of a range of issues, but I felt he avoided expressing his opinion. In the end, I felt he seemed to believe there were reasons for avoiding ‘active’ euthanasia, whilst appearing much more tolerant of PAS. As I have read elsewhere on numerous occasions, we are told that more than half the population of Oregon supported the Death With Dignity Act in November 1994. But according to the Oregon Secretary of State, only 1,254,265 people voted that day, indicating that the DWD Act was supported by only 34.9% of registered voters.
Although rich in theory, I couldn’t find much discussion about the known practical difficulties. What about the Dutch patients given lethal medication without explicit request—a thousand patients a year throughout the 1990s, a significant proportion of whom were competent; I think the 2015 figure was down to 500-odd, or only ten per week. What about the Dutch patients subjected to continuous deep sedation until death (26,400 in 2015, or 18% of all deaths), in 5% of which cases (some say more) it is performed with the specific intention of hastening death?
And it’s not just the Netherlands. Over 20 years, only 5% of candidates for PAS in Oregon have had a psychiatric assessment and there is evidence of patients with potentially treatable depression undergoing PAS. The lack of any oversight of the assessment process has been criticised, as in the cases where lethal prescriptions were issued for reasons of caregiver burden and so as not to disappoint the family. And the lack of any serious complications of the PAS procedure in Oregon (although I note one person took 104 hours or 4.3 days to die)? The Dutch say nearly one in five attempts at PAS ends up with doctor-administered euthanasia. Anyone know the truth?
In the discussions, I found it curious that the patient subject was always described as ‘she’, with her wishes and her rights. This is the same as in Sumner’s Assisted Death (Oxford University Press, 2014), where I thought it might be a subconscious appeal to the innate sentiment to protect, or at least not harm, the fairer sex, whilst selling a horrid message.
Some comparison with Quill T and Miller F (eds.) Palliative Care and Ethics (Oxford University Press, 2014) is appropriate. I had trouble (and still do) with Quill’s denial of the possibility of a double effect when treating pain and symptoms, and Weyer’s discussion of euthanasia in Europe was so selective as to be a disgrace. The current volume has the considerable advantage of being single-authored.
Overall, I thought this book was a remarkable effort and I know it will be a useful reference for anybody who works in palliative care. Even in the sections that I have criticised, I have to
say that the discussions of the pros and cons of various issues (as far as they went) were set out in a calm and even manner.
Roger Woodruff (June 2018)
EUTHANASIA, ETHICS AND PUBLIC POLICY: AN ARGUMENT AGAINST LEGALISATION 2e
Cambridge University Press, 2018
This is the latest addition to John Keown’s library of excellent books to do with euthanasia—Euthanasia Examined (Cambridge, 1995), Euthanasia, Ethics and Public Policy (Cambridge, 2002), Debating Euthanasia (Hart, 2012), and The Law and Ethics of Medicine (Oxford, 2012). Perhaps because a lot has happened in the 16 years since the first edition, I thought this latest was the best.
The book starts with a section on definitions, the clarity (or obfuscation) of which are very important in the debate. Part II outlines the three main arguments for permitting euthanasia and PAS, together with the counter-arguments. His descriptions of the moral issues are clear and the legal matters interesting. Following this there is a good chapter on slippery slopes, both ‘empirical’ and ‘logical’. Part III explores the Dutch experience in detail, following which there are sections on Belgium, the (Australian) Northern Territory, Oregon, and Canada.
In the sections on the Netherlands and Belgium, Keown explains how laws that were insufficiently precise or strict were inevitably stretched, and there has been unrelenting progression towards euthanasia being ‘normalised’—euthanasia has become just another option, perhaps even the default one, and has progressed from an exceptional act to a legal right. He quotes Belgian Professor Etienne Montero: ‘Indications for euthanasia are constantly multiplying, despite the legislators’ initial statements and intentions.’ He carefully and logically dismantles John Griffiths’ and Gerrit Kisma’s defence of Dutch euthanasia, in particular regarding the effectiveness of the regulatory system. I was interested to read about Theo Boer (the Professor of Health Care Ethics who was previously pro-euthanasia and served on a Regional Euthanasia Review Committee from 2005 to 2014), who has now become a leading critic of the system. Boer has published figures showing the suicide rates in the Netherlands are the fastest growing when compared to surrounding European countries, most of which lack the option of euthanasia, and that the big increase from 2007 to 2015 occurred during the time when euthanasia had become more accessible.
The review of Oregon confirms there is no effective regulatory system in place and Keown believes it is only a matter of time before euthanasia by injection is condoned.
Canada, or at least the Canadian Supreme Court, does not get good press. Keown details a list of ‘judicial errors’ and claims ‘the judgement of the Canadian Supreme Court was gravely flawed.’ He asserts that ‘disturbing and well-documented evidence, including that of Professor Montero showing the Belgians skiing past the Dutch down euthanasia’s slippery slope, was waved aside’. He also criticises the use of what he calls fuzzy criteria (e.g. ‘grievous and irremediable medical condition’); for the most meaningless criterion, I chose: ‘their death has become reasonably foreseeable’. And the attempted prohibition of conscientious objection in Canada is ominous. Whilst I believe religious freedoms are preserved under Canada’s Charter, the College of Physicians and Surgeons of Ontario has decreed that if a doctor is unwilling to perform euthanasia or physician-assisted dying, they must provide an ‘Effective Referral’ to a doctor who will, i.e. the College does not consider providing the patient with an ‘effective referral’ as ‘assisting’ in providing medical assistance in dying.
In a short Afterword, Keown details the legislation passed in my home State of Victoria. What he does not tell you is that the parliamentary committee that recommended assisted dying, after a nice tax-payer-funded junket to Holland, Switzerland, Canada and Oregon, cited no evidence of abuse or deficiency in the regulatory systems in any of the jurisdictions visited. And that a big deal (i.e. emotive appeal to the masses) was made of the Coroner’s deposition, detailing all the suicides in persons who had ‘experienced an irreversible deterioration in physical health’, which proponents said would be eliminated by assisted dying legislation; the evidence from Oregon and the Netherlands is unequivocal that the suicide rate goes up after legalisation of assisted dying. And that we were repeatedly promised over a period of at least two years that self-administered oral medication was absolutely the only method being considered; then at the very last second, euthanasia by injection was added for any person who is ‘physically incapable of the self-administration or ingestion’ of the lethal substance; I have predicted that the breadth of interpretation of those words would be breath-taking. I could go on…
Reading the descriptions in this book, one is repeatedly reminded of the rising swell of public support for assisted dying, which Syme (Time to Die, MUP, 2016) refers to as ‘The Momentum’, which unequivocally demands legislation. Polls show 70% (or thereabouts) of ordinary people support legalisation. Polls of people who are terminally ill show that about 70% support legalisation, but less than 10% would request it for themselves if it were legal. And the Oregon experiment? There are about 7,500 deaths from cancer each year, or about 150,000 since the DWDA was enacted. Given that 35% of the adult population voted in favour of the DWDA, that should have resulted in 52,500 assisted deaths from cancer alone. Of the 1275 patients to 2017, 68% (867) had cancer. Which means only 1.6% of patients dying of cancer, who voted in favour of the DWDA, chose an assisted death. Seems to me the clinical ‘need’ and public ‘demand’ are much exaggerated.
This book is the best collection of information regarding euthanasia that I have seen and is strongly recommended if you have any interest in euthanasia and assisted dying debate.
John Keown holds the Rose F. Kennedy Chair in the Kennedy Institute of Ethics at Georgetown University, in Washington DC.
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