End of life decisions in mentally disabled peopleBMJ 1997; 315 doi: http://dx.doi.org/10.1136/bmj.315.7100.73 (Published 12 July 1997) Cite this as: BMJ 1997;315:73
Protecting vulnerable life does not mean prolonging it regardless of suffering
- Paul J van der Maas, Professora
The acid test for any society that claims to be civilised is whether it really protects the life and promotes the wellbeing of its most vulnerable citizens, including the very young, the very old, the chronically ill, and certainly the mentally impaired. Most seriously mentally disabled people have only a limited ability, or are entirely unable, to judge their own situation and make adequate decisions about it and are thus partly or entirely incompetent. All major decisions have to be made for them or, at least, have to be supported by carers and relatives. This sometimes includes difficult medical decisions at the end of life. Protecting vulnerable life does not mean prolonging it regardless of the amount of suffering this would entail.1 In this week's BMJ (p 88), van Thiel et al chart, for the first time, end of life decisions in people with mental disability.2
That this study was performed in the Netherlands should be no surprise. Previous studies have shown that Dutch physicians support such research, which has resulted in detailed and reliable information about end of life decision making in general practice and in clinical medicine3 4 but also in sensitive domains such as nursing home care, psychiatry,5 neonatology,6 and the care of patients with AIDS.7 But perhaps the care of people with mental disability is the most sensitive in this respect, and until now it has been the subject of little professional or public debate.
Too sensitive an issue
This is illustrated by the Royal Dutch Medical Association, which last year published its position paper on euthanasia on explicit request,8 followed two weeks ago by a position paper on end of life decisions in incompetent patients.9 The first paper supported the practice of euthanasia in competent patients under several strict conditions. The second paper was more directed at decisions to withhold or withdraw life prolonging treatment in four groups of patients: neonates, psychogeriatric patients, psychiatric patients, and comatose patients. Mentally disabled patients were left out of this report, the issue being too sensitive.
Care for this group differs in several respects from care for those other groups of incompetent patients. The incompetence, whether complete or partial, is lifelong and is in that respect part of the person's identity. This gives a more optimistic perspective to care than in other forms of incompetence, such as dementia or the gradual loss of consciousness in the final stages of a terminal disease, where the incompetence represents a loss of previous competence and identity. Those caring for people with mental disability must learn to understand even very slight cognitive or emotional expressions from the patients, often through long and close interaction. End of life decision making is therefore more multidisciplinary and requires time and effort to clarify the patient's wishes and to obtain complete consensus of all concerned.
Active ending of life is exceptional
In keeping with these differences, van Thiel et al found that active ending of life of patients with mental handicap was highly exceptional in the Netherlands, occurring perhaps once or twice a year.2 In about a third of all deaths of people with mental handicap in 1995 there had been a decision to withhold or withdraw life prolonging treatment, while in about 10% of cases opioids had been given in doses that might have shortened life. In the general population, by comparison, these figures are 20% and 19% percent respectively.2 The estimated amount of time by which life had been shortened was on average lower than in end of life decisions in the general population, suggesting that end of life decisions in people with mental disability are made in a late stage of the terminal illness.
Studies such as these show new facts, not new practices. Empirical research is a prerequisite for serious ethical debate and for learning from each other in optimising the quality of care for dying people. To decide whether physicians are, as some people fear, sliding down a slippery slope towards widespread euthanasia, time series of empirical data are needed; and if we are to identify relevant differences between countries in the care for the dying and the quality of decision making about the end of life, we need comparative studies. The rare examples of such studies2 10 have already shown some surprising results.