International Association for Hospice & Palliative Care

International Association for Hospice & Palliative Care

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IAHPC Hospice and Palliative Care Newsletter


2005; Volume 6, No 6, June


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Message from the Chair & Executive Director:
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Liliana De Lima, MHA

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Book Reviews:
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IAHPC Faculty Development Award Report:
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'The Right to Die' and 'The Right to Live' Debate:
Dr. Derek Doyle

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Contributions from IAHPC Board Members

‘The Right to Die’ and ‘The Right to Live’ Debate

Dr. Derek Doyle ( Scotland )

The debate about the so-called “ Right to Die “ continues in the United Kingdom as in several other countries. Much of it has centred on what is the perceived risk of doctors continuing to maintain life which, in the opinion of the patient, no longer has any quality or is characterised by pain and suffering of one kind or another.

The attitude of the medical profession has, by and large, been that the decision to treat or to maintain life should be left to them, the doctors. Predictably this has led to claims that this gives doctors too much power over life and death.

In 2002 the General Medical Council (GMC), the body regulating medical practice, issued guidance that doctors might stop feeding and rehydrating a patient by artificial means if they judge that the “ patient’s condition is so severe, or the prognosis so poor, that providing artificial nutrition and rehydration may cause suffering or be too burdensome in relation to the possible benefits.”

Now a gentleman with progressive cerebellar ataxia has brought an action which challenges a doctor’s right to discontinue such feeding and hydration, claiming that it imperils his “ right to live.” Knowing that eventually he will lose the ability to swallow he claims that doctors might decide that his life is no longer worthwhile and discontinue artificial feeding and hydration with the result that he would suffer “ pain and extreme distress” in the two or three weeks it would take for him to die from malnutrition.

Lawyers acting for the GMC claim that all this is putting doctors “ in an impossibly difficult situation.” A patient would be able to force a doctor to provide a form of treatment that the doctor might consider of no clinical benefit if not harmful.

Now the government has stepped in citing the expense of keeping someone alive. Lawyers acting for the Department of Health are now, in effect, supporting the GMC, claiming that if patients have a right to demand life-maintaining treatment it will create “ a culture in which patients request treatments no matter how untested, inappropriate or expensive, regardless of the views of doctors.” The court has been told that a bed in an intensive care unit costs £ 1,500 a day, and one in a high dependency unit £ 800 a day.(US$ 2,400 and US$ 1280 respectively).

However, the financial implications are not the only ones in the United Kingdom today. The much-vaunted National Health Service is chronically short of resources. The country has only 4 critical care beds / 100,000 population compared with 25 in Germany and 24 in the US .

This on-going debate has major implications for us in hospice and palliative care. In many countries there is diminished respect for, unquestioning trust in, doctors and increasing suspicions that they wield too much power and influence particularly with respect to life shortening and life prolonging. Rather than be subjected to the ethical, legal, and financial pressures discussed in this article some hospital doctors will opt for their terminally ill patients to be transferred to hospices and palliative care units. How long will it be before we hear of more patients there being the subject of legal battles? What of the financial implications for palliative care units of maintaining life, whether it is with drugs, feeding or hydration? Again looking at the UK , only 25-30% of running costs are now met from government subsidies, leaving vast sums to be found elsewhere.

For a long time we have had palliative care patients tell us that they most definitely do not want euthanasia, but if it is costing the country so much to care for them, as politicians never stop telling us, they wonder if it is their moral duty to die sooner rather than later if it saves precious resources. A newspaper headline today states “ Health minister puts a price on the right to life.”

This current debate about recognising the inevitability of death and the rights of patients to share in decision making (or make decisions against the informed advice of their doctors) must also be seen against a rapidly changing medical care background. Under a new contract British general practitioners / family doctors were allowed to choose whether they would provide “out-of-hours medical care”(either with their partners or using a local co-operative) or opt out of all evening and night care. Close on 100% opted out, ending a long tradition of British medicine which had ensured that when a doctor was needed at night the one who came to the house (for example to a terminally ill patient) would be one known to the patient. Under a relatively new European Union directive junior hospital doctors work much shorter hours, making it more likely that when one is called to a bedside it will be one unknown to the patient. A harsh judgment perhaps, but many people are now hinting that doctors are less caring, less deserving of unquestioning trust. They see challenging doctors motives and recommendations, as in the “right to live, right to die debate” as both necessary and timely.

The debate continues and is likely to do so for a long time in the United Kingdom .

Derek Doyle writes about the manifesto of the National Council for Palliative Care and the response to it by the three major political parties in the United Kingdom

Some readers will know that Britain is due to have an election in May to elect a new government, the present one - a Labour one led by Tony Blair – having been in power for eight years. The other two major parties are the Conservatives (the main opposition party) and the Liberal Democrats.

In January 2005 the National Council for Palliative Care, an umbrella organisation bringing together all providers of palliative care in the UK, in association with the All Party Parliamentary Palliative Care Group produced a manifesto based on 3 principles and incorporating 4 pledges.

  • That everyone has a right of access to palliative care services appropriate to their need
  • The everyone should be able to exercise choice about their place of death at the end of life
  • That everyone is entitled to a good death.

This manifesto, having been warmly welcomed by voluntary sector providers, was then sent to each of the main political parties listed above for their responses.

Perhaps predictably they were all enthusiastic about palliative care and, in different ways, pledged their political and financial support. Again as might be expected, the present government highlighted what it had done for palliative care in recent years and would continue to do if re-elected, whilst the others pledged to better that. Their pledges of financial support and encouragement have to be seen against the number of providers in the UK – 220 adult in-patient units (3156 beds), 33 children’s hospices (255 beds). 358 community (home) palliative care services, 263 Day Units and 361 hospital palliative care teams. The Conservative Party in particular mentioned NICE, a name that may puzzle readers of this newsletter. It stands for National Institute for Clinical Excellence, the body setting and monitoring clinical standards in the UK.

What relevance has all this to other countries, many much less fortunate than the UK?

Firstly it reminds us that nearly 40 years after Cicely Saunders opened St Christopher’s in London palliative care providers in the UK still have to ‘sell’ themselves. It is also a reminder of the usefulness of a body such as the All Party Parliamentary Group, which ensures that politicians of different parties, policies and priorities are kept informed about palliative care. Worldwide experience has shown that informed politicians and administrators can make all the difference to the acceptance and development of palliative care in a country. Several countries now have groups similar to this one serving the politicians of England, Wales and Northern Ireland. We need not be cynics to know that pre-election promises do not always mature into post-election fulfillments, but the National Council for Palliative Care has acted very responsibly and shrewdly by getting the political parties to put in print what they plan/ ”promise” to do. We may be sure that they will not hesitate to remind the politicians of those promises and pledges.

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