Will to live in the terminally ill

Abstract

Authors' reply Sir—Stanley Terman would seem to prefer a different study—one examining the temporal stability of requests to die, among only patients making such requests. That particular study would have required us to start “with over 50 000 patients” and would have taken 700 years to complete if 70 patients were recruited each year. We genuinely intended, however, to objectively examine the temporal variations in the will to live among dying patients, and thus chose our sample and outcome measures accordingly. Thomas Preston states that “requests for euthanasia or physician-assisted suicide are sustained and without fluctuation”. However, for every anecdote there is a counter anecdote, and the literature is replete with examples of patients who relinquish their request to die once their suffering has been alleviated.1Emanuel EJ Fairclough DL Daniels ER Clarridge BR Euthanasia and physician-assisted suicide: attitudes and experiences of oncology patients, oncologists and the public.Lancet. 1996; 347: 1805-1810Summary PubMed Scopus (263) Google Scholar, 2Hendin H Suicide, assisted suicide, and medical illness.J Clin Psychiatry. 1999; 60: 46-50PubMed Google Scholar In offering empirical data on will to live, we have attempted to step beyond anecdote. Granted, a request to die, a desire for death, and a paucity of will to live are not identical constructs. However, they do overlap, and it would be hard to imagine a case where a sustained request to die was accompanied by a robust will to live and no desire for death. Your correspondents raise several important methodological and ethical issues. For example, do exact will-to-live scores correlate with specific attitudes and preferences about one's terminal course? Are there critical threshold will-to-live scores, which may help guide end-of-life care? These questions remain unanswered, and further qualitative and quantitative studies are needed. Is it ethical to do research of this kind? The research agenda should never supersede or sacrifice good patient care, but we must also ask the question, is it ethical not to be engaging patients in end-of-life care research, and thereby embrace the status quo? Are the fluctuations we report real, or merely a reflection on the instrument's imperfections? Research on the psychometric properties of visual analogue scales indicates they are both valid and reliable for this population.3McCormack HM Del Horna DJ Sheather S Clinical applications of visual analogue scales: a critical review.Psychol Med. 1988; 18: 1007-1019Crossref PubMed Scopus (1380) Google Scholar That will to live correlated significantly with some symptoms and not others, and that those relations were clinically interpretable and meaningful further supports the validity of the scale. To what extent do our findings inform the debate on euthanasia and assisted suicide? Pellegrino4Pellegrino ED The limitation of empirical research in ethics.J Clin Ethics. 1995; 6: 161-162PubMed Google Scholar points out that there are limitations to the extent to which empirical research can inform the debate “about the moral propriety and policy implications of euthanasia and assisted suicide”. However, he indicates that empirical data “can help clinicians to diagnose the reasons for patients' desperation and … guide the specialist in palliative care and the patient's family and friends to help the patient cope with his or her problems and to die with genuine dignity”. If our research on will to live is able to do that—even in a small way—and serve as a springboard for others to follow up and refine our work, then it will have accomplished all we hoped it might. Will to live in the terminally illHarvey Chochinov and colleagues (Sept 4, p 816)1 claim to have shown a “changing pattern of will to live in the palliative-care setting”, and conclude that “demonstration of a sustained wish to die must be part of evaluating any death-hastening request”. We totally agree on ethical grounds, but not on the basis of clinical pragmatism.2 Their assumption that will to live is a continuous rather than a dichotomous phenomenon is unproven and their study has statistical difficulties. Full-Text PDF Will to live in the terminally illHarvey Chochinov and colleagues1 provide two examples of methodological error in their study. They imply that because dying patients have fluctuation in will to live, “the likely transience of a request to die” should be an important consideration for jurisdictions about physician-assisted suicide. However, the investigators did not study will to die or patients' request to die. Full-Text PDF Will to live in the terminally illHarvey Chochinov and colleagues1 address the important question of how patients’ will to live fluctuates as they die. They also illustrate many of the challenges faced by palliative-care researchers. Full-Text PDF