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Conversations About Whether Those Who Are Dying Should Have the Right to Determine When Life Should End
228 pp; hardcover
Also available: ebook
RRP $US16.60 £19.99
Novelist John Grisham opens the batting. His Foreword begins: “I believe it’s wrong to sustain a life beyond the point when it should not be sustained, when it should be terminated.” But who makes the decisions about “the point”? Grisham? The doctor? The family? The patient (assuming, of course, that their mental state is intact)? There is often no clear line, no black and white, to the question of whether an individual’s treatment should continue. And if it is decided that continued treatment is not justified, is it then necessary to resort to active methods of life termination? He brushes aside any concerns that the right-to-die laws might be used not in the best interests of the patient; I wondered about the thousand patients a year subjected to euthanasia in the Netherlands without request, never mind consent.
The Preface is about the death of Rehm’s own mother. Rehm, a retired radio talk show host, recalls, “There was nothing more they could do to ease her pain or to keep her comfortable. She died suffering.” It is indeed sad that her mother died with unrelieved pain and symptoms, and that Rehm has carried that memory for more than 60 years. When I look at those words as a physician, I feel shame. My own mother died in the same period, the late 1950s. She died with a form of cancer that I later learned had an almost limitless capacity for causing pain and suffering. But conversations were had, and decisions made. Her symptoms were attended with meticulous care and her analgesia titrated against her pain, 24/7. I remember the look on the doctor’s face, when he made his daily visit, that said it wasn’t easy for him, either. She didn’t die with unrelieved pain, she didn’t die suffering. Comparison of these two outcomes leads to some big questions about medical training and practice, but I believe it has nothing whatsoever to do with any need for legislation to allow assisted dying.
We are introduced to Barbara Coombs Lee, President of Compassion and Choices, who discusses a number of important issues, from overtreatment to ignoring DNR orders. I wholeheartedly agree with the need for change and improvement in the medical care of the terminally ill, but how this is twisted to necessitate and justify widespread programs of assisted suicide is not clear to me.
Then there is the doctor who bemoans the difficulties that may be encountered with patients whose pain is due to psychological or spiritual issues, and concludes that they are “very difficult to treat medically,” with pain “we just cannot palliate.” So, assisted dying comes into play to relieve the “unrelievable” suffering for the patients, and to avoid what “is just heartbreaking for a physician.” I hadn’t thought of caring for the terminally ill as being either easy or stress-free.
And then there is a breath of fresh air from Dr. Christina Puchalski, Director of the George Washington University Institute for Spirituality and Health, who asserts that much of the untreatable symptomatology of terminal illness relates to existential and spiritual suffering. She seriously questions whether the introduction of assisted dying is the best means of addressing suffering associated with terminal illness.
There is a long conversation with widower Dan Diaz that adds little if anything. The depth of his insight is reflected in his statement (as a member of the Latino Leadership Council of Compassion and Choices) that all physician-assisted deaths are “gentle and peaceful,” whilst all non-physician-assisted deaths are “struggling and in pain.”
And for the small numbers of patients with no physical, psychological, or spiritual suffering — those who must be in control for the sake of being in control? Well, at least one pastoral care specialist, Martha Nelson, does not think the laws should be changed just to please them.
A physician very much in favour of assisted dying describes VSED [voluntary stopping eating and drinking] as “a horror show.” But there is no reference to the Oregon and Dutch studies showing how well it seems to be tolerated.
There are a lot of other conversations here — with patients, carers, doctors, clergy, and even a death educator. The contributions from lawyers and elected persons, whilst appearing to know more about what is best for everyone, lack the bedside relevance essential to any discussion about assisted dying. And, despite all the words spent, I think this book has heightened my opposition to assisted dying/suicide.
I felt uncomfortable with the lecture to medical students by Dr. David Grube, National Medical Director of Compassion and Choices, which I thought was biased and avoided any difficult or contentious issues. And he wanted me to believe that a second-year medical student got up after his talk and asked, “We’re fortunate to have physicians like you providing this care for patients, but how can we empower other physicians to seek further training in this area…?”
Which brings me to the last point — innate in Rehm’s and similar books — that there is a vast population of people out there hungering for assisted death. In Australia, polls show that about 70% of people support the legalisation of assisted dying, which its proponents are quick to tell us indicates all these people will want assisted dying when their time comes — the great change in public attitudes that Rodney Syme, an advocate of assisted dying, refers to as “The Momentum.” But it’s all a big lie. There are two Canadian studies of terminally-ill palliative care patients reporting that about 70% are supportive of legalisation of assisted dying, although only 6% and 8%, respectively, indicated they might request assisted dying for themselves if it were legal. In the state of Oregon, there are about 7,500 deaths from cancer each year, or about 150,000 in the 20 years since the DWDA [Dying with Dignity Act] was enacted. If 35% of the adult population voted in favour of assisted dying (which amounted to 51% of votes cast on the day), that should have resulted in 52,500 assisted deaths from cancer alone. The score so far? Just 867.
This book might be seen as a catalogue of how we can (and do) make management of the dying more difficult and, as such, should be a fount for discussion and improvement. But to use the same information to justify the establishment of easily accessed schemes of assisted suicide would to me be an absolute anathema, a dereliction of duty to my fellow human beings and patients. Even if you think the system’s broken, and there’s no easy fix in sight, I cannot condone burying the problem by encouraging the dying to commit suicide.
My referenced discussion of the consequences of legalised assisted dying, Euthanasia and Physician Assisted Suicide: Are they clinically necessary or desirable?, is published on the IAHPC website.
(Roger Woodruff, February 2020)
NB: Review copies become the property of IAHPC and are not returned to the author. Only books related to palliative care that have been approved and have an ISBN will be reviewed. Due to the large number of requests, we cannot provide exact dates of when books will be reviewed.
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