Tony Nicklinson’s prolonged distress and the recent case of Omid T shows why people with intolerable and intractable suffering with no early end in sight should also be considered for medical assistance to die if they want it
The debate about legalising Medical Aid in Dying (MAID) in Britain is not going to stop. Whatever form legislation eventually takes, doctors will be the professionals most involved in enabling patients to have more control over the manner and timing of their deaths. Earlier medical debates about contraception and abortion produced strong feelings on both sides, but they were eventually won by pro-choice campaigners who had no wish to force their views on patients or doctors. MAID campaigners want laws that neither require nor forbid doctors to perform life-ending procedures or write life-ending prescriptions. In an increasing number of countries, including Belgium, Colombia, Canada, the USA, Switzerland, Australia, the Netherlands and Luxembourg, the debate has been settled in this way.
Yet there are also some less heated debates among pro-choice doctors. One of those issues in Britain and several American states that allow MAID, concerns whether choice in dying should be restricted to terminally ill patients, or be extended to those with medical conditions that are intractable and intolerable with no prospect of relief from an early natural death. Several British patients in that category gained considerable sympathy and support. Omid T (who had multiple systems atrophy) recently had an assisted death in Switzerland. Tony Nicklinson (who had locked-in syndrome) had to end his life by voluntary starvation. As Lord Justice Neuberger, previously president of the UK Supreme Court, remarked in his judgment on the Nicklinson case, there is “significantly more justification in assisting people to die if they have the prospect of living for many years a life that they regarded as valueless, miserable, and often painful, than if they have only a few months left to live.” [1]
My Death. My Decision (MD.MD) was formed by Dr Michael Irwin in 2009, specifically to campaign for that more inclusive definition of the “right to die” and to broaden the public debate in the UK, including the encouragement of early and comprehensive Advance Decisions. These were the goals of the Voluntary Euthanasia Society, the world’s first right-to-die organisation, founded in 1935 by (among other leading citizens) Lord Moynihan, the royal surgeon and former President of the Royal College of Surgeons. Today, we announce the establishment of the MDMD Medical Group (MD.MG) and invite doctors and nurses to join.
In 2005 the Voluntary Euthanasia Society changed its name to “Dignity in Dying.” Its last attempt to introduce legislation—the Marris Bill (which MDMD supported)—proposed limiting MAID to patients expected to die within six months. That clause was widely criticized because of the difficulties of accurate prognosis, but had it been successful, it would have excluded the many non-terminal patients with currently intolerable physical and existential suffering. It would also have excluded patients with early degenerative brain conditions who, if forced to wait until the last six months of their life would have lost the mental capacity that MDMD views as an essential safeguard. This is pertinent as adults of all ages in Britain now worry more about dementia than cancer. [2]
Given that it is unlikely that there will be further bills put to the UK parliament in the next few years and the increasing emphasis on patient-centred medicine, we urge all doctors supporting right-to-die legislation to use the time to revisit the fundamental issues of patient autonomy, choice, and compassion. We must also work together on acceptable safeguards. MD.MG aims to provide the specifically medical and nursing input that this wider debate needs. That includes encouraging patients to contemplate both death and dementia, plan for them well in advance, and register detailed Advance Decisions.
Patients with early dementia already form a small, but growing proportion of the British citizens who travel to Switzerland for MAID. They include some distinguished citizens who cannot easily be regarded as vulnerable or acting under coercion from rapacious inheritors. In a recent National Centre for Social Research opinion poll, 88% of the more than 2500 respondents supported MAID in early dementia in at least some cases. The same proportion supported it for someone suffering unbearably from a non-life-threatening condition. The poll also found that the proportion who support MAID in at least some cases for incurable illness that will eventually cause death (thus including Oregon-style terminal illness scenarios) has risen to 93%.
Most British citizens would decline active treatment for life-threatening medical or surgical conditions if their personalities and cognitive abilities had been severely damaged. [3] Parliament should not ignore people who would want the option of taking action before reaching that stage, even though most patients who will benefit from assisted dying laws retain mental capacity to the end.
Henry Marsh is a consultant neurosurgeon and best selling author of “Do No Harm: Stories of Life, Death and Brain Surgery” and “Admissions: A life in brain surgery.”
Wendy Savage is a British gynaecologist, and advocate and campaigner of women’s rights in childbirth and fertility.
Iain Chalmers is a medical researcher and founder of the Cochrane Collaboration,. He is acting coordinator of the James Lind Initiative, editor of Testing Treatments and James Lind Library.
Competing interests: None declared
REFERENCES.
- R (on the application of Nicklinson and another) v Ministry of Justice [2014] UKSC 38, para 122
- Alzheimer’s is the greatest concern for over-60s. Yougov poll July 26, 2015,
- Williams N, Dunford C, Knowles A, Warner J. Public attitudes to life-sustaining treatments and euthanasia in dementia. Int J Geriat Psychiat 2007 Dec;22(12):1229-34.