Professor Raymond Tallis

Unbearable suffering, prolonged by medical care, and inflicted on a dying patient who wishes to die, is unequivocally a bad thing

A few years ago, I was chairing a leading medical ethics committee and we had been asked to consider the first Bill put forward by Lord Joffe to legalise assisted dying for people with terminal illness(1). We opposed the Bill. Some members of the committee did so on religious grounds or on the basis of what they saw as ethical principles. The hostility of the many, including myself, against the assisted dying legislation was based on assumptions we had about its possible longer-term consequences on the practice of medicine and more broadly in society.

The case for a similar Bill to me now seems clear. Unbearable suffering, prolonged by medical care, and inflicted on a dying patient who wishes to die, is unequivocally a bad thing. And respect for individual autonomy — the right to have one’s choices supported by others, to determine one’s own best interest, when one is of sound mind — is a sovereign principle. Nobody else’s personal views should override this.

So where did my initial opposition come from? I was in thrall to numerous incorrect assumptions. But the evidence changed my mind.

Several of my assumptions related to palliative care. Wouldn’t assisted dying be unnecessary if the best palliative care were universally available? This is not true and I should have acknowledged this from my experience as a doctor for more than 35 years, when I treated patients whose symptoms were uncontrolled even when they had first-rate palliative care. International experience also confirms that palliative care fails some patients. For the last ten years, assisted suicide has been legal in Oregon under the Death with Dignity Act(2). Oregon has among the best palliative care of all the states in America and yet nearly 90 per cent of those seeking assisted dying do so from within those services(3).

I was advised that that the availability of assisted dying as an “easy” option would inhibit investment in palliative care. Again, international experience does not support this. In many countries, the legalisation and regulation of assisted dying has been accompanied by increasing investment in palliative care services(4) (5) (6). In Oregon the proportion of people dying in hospice care has increased from 37% in 2002 to 52% in 2009 – one of the highest rates in the USA(7).

I also shared the worry that legalising assisted dying would break down trust between doctor and patient. This is not borne out by the evidence. A survey of nine European countries put levels of trust in the Netherlands at the top(8). And this is not surprising: in countries with assisted dying, discussion of end-of-life care is open, transparent, honest and mature, not concealed beneath a cloud of ambiguity, as it is in the UK. And the knowledge that your doctor will not abandon the therapeutic alliance with you at your hour of greatest need will foster, not undermine, trust.

I was also concerned that legalising assisted dying would take us to the top of a slippery slope leading to the involuntary euthanasia of people who do not wish to die. In fact, to use the ethicist John Harris’s phrase, if there is a slippery slope, legislation would apply crampons rather than skis.

In Oregon, whilst numbers have risen since legalisation, overall numbers have remained low (under 0.2% of all deaths) and the kinds of people being helped to die have not changed(9). The Dutch experience was to me decisive. Rates of non-voluntary euthanasia (i.e., doctors actively ending patients’ lives without having been asked by them to do so) decreased from 0.8 per cent of all deaths in 1990 (approximately 1,000 deaths) to 0.4 per cent in 2005 (approximately 550 deaths)(10).

In the UK, a study published in Palliative Medicine found that 0.21% (approximately 1, 000) of deaths attended by a medical practitioner in the UK were as a result of voluntary euthanasia(11). The study also found that 0.3% (approximately 1, 500) of life was ended as a result of non-voluntary euthanasia. The present clinical, ethical and legal fudge — in which ploys such as continuous sedation, and starvation and dehydration, are used to get round the prohibition on assisted dying — is unacceptable.

As a geriatrician, I was also worried that assisted dying would be offered to, or imposed upon, those who are most disempowered. A very detailed analysis of the data in Oregon has shown that there is an under-representation of those groups and an over-representation of comparatively well-off, middle-class white people(12) — feisty characters who are used to getting their own way .

These were the facts that prompted me to change my mind. Even those who accepted these facts still opposed legislation on the grounds that only a small minority of dying people would seek assistance and an even smaller number would use the prescription. Wouldn’t legislation prove a sledgehammer to crack a nut?

Well, I happen to believe that even small numbers of people going through unbearable hell are important. The availability of assisted dying would bring much comfort to many more sufferers than actually use it because it brings a sense of having some control.

Death from dehydration and starvation in patients, who have no means of securing an end to their suffering other than by refusing food and fluids, or botched suicides, reflect the unspeakable cruelty of the present law. To accede to someone’s request for assisted dying under the circumstances envisaged by Dignity in Dying and others is not to devalue human life, or devalue the life of a particular human being, or to collude in their devaluing their own life. It is to accept their valuation of a few remaining days or weeks of life that they do not wish to endure.

As a result of the courageous action of Debbie Purdy those who assist their loved ones on grim pilgrimages to Switzerland may be confident that they will not face prosecution. But we have a legal vacuum. Legalisation of physician-assisted dying is needed urgently.

Raymond Tallis FRCP FMedSci DLitt FRSA
Emeritus Professor of Geriatric Medicine, University of Manchester

1. http://www.publications.parliament.uk/pa/ld200506/ldbills/036/06036.i.html
2. http://www.oregon.gov/DHS/ph/pas/index.shtml
3. http://www.oregon.gov/DHS/ph/pas/docs/year12.pdf
4. Van Den Block, Deschepper R, Bilsen et al (2009) Euthanasia and other end-of-life decisions: a mortality follow-back study in Belgium BMC Public Health 9(79): 1-10
5. http://www.admdl.lu/en/node/57
6. Korte-Verhoef, R., “Developments in palliative care services in the Netherlands”, European Journal of Palliative Care 2004; 11 (1): 34-37
7. Oregon Hospice Association
8. Kmietovicz Z (2002) R.E.S.P.E.C.T. – why doctors are still getting enough of it BMJ 324 (7328): 11-14
9. http://www.oregon.gov/DHS/ph/pas/index.shtml
10. Van der Heide A et al (2007) End-of-life practices in the Netherlands under the euthanasia act New England Journal of Medicine 356(19): 1957-1965
11. Seale C (2009) End-of-life decisions in the UK involving medical practitioners Palliative Medicine 23: 198-204
12. http://www.oregon.gov/DHS/ph/pas/docs/yr12-tbl-1.pdf