- Email: [email protected]
Will to live in the terminally ill
4
Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med 1997; 155: 15–20. 5 Quill TE, Lo B, Brock DM. Palliative options of last resort. A comparison of voluntary stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia. JAMA 1997; 278: 2099–104.
Sir—Harvey Chochinov and colleagues 1 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. The factors involved in the will to live and patients who do not request to die differ substantially from desire to die and patients who request euthanasia or assisted suicide. Anyone who has watched a patient dying over weeks or months is well aware of fluctuation in will to live. The will to die through assisted suicide is qualitatively very different. Most patients who express no will to live do not have a will to die with medical assistance. Whereas will to live is reduced by anxiety and physical symptoms, desire for assisted suicide comes from personal attitudes and values. Chochinov et al did not study transience of a request to die; they studied will to live, and did not report any request to die by their patients. The second error was to use data for terminally ill patients who did not request to die to assess patients who did request to die. These are different patient groups, and the error is as great as it would be by use of the results of a drug in non-depressed patients to infer what would happen if the drug were given to depressed patients. Although no patients are reported as requesting assisted suicide, in a previous study only one patient requested euthanasia and the request was sustained until the patient d i e d . 2 This conforms with my experience of more than 30 patients who have requested physician-assisted suicide,3 in whom the requests were sustained and without any fluctuation. Chochinov and colleagues’ study is seriously flawed because it used the wrong measure for the wrong patient population. To be meaningful to the debate on euthanasia, we should study the desire to die in those who request assisted suicide. Thomas A Preston Department of Medicine, University of Washington, Seattle, WA 98112, USA
2084
1
Chochinov H, Tataryn D, Clinch JJ, Dudgeon D. Will to live in the terminally ill. Lancet 1999; 341: 816–19. 2 Chochinov HM, Wilson KG, Enns M, et al. Desire for death in the terminally ill. Am J Psychiatry 1995; 152: 1185–91. 3 Preston TA, Mero R. Observations concerning terminally ill patients who choose suicide. J Pharmaceut Care Pain Symptom Control 1996; 4: 183–92.
Sir—Harvey Chochinov and c o l l e a g u e s 1 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. Sample selection and patient attrition are common difficulties. The investigators made a practical choice to study voluntary hospice patients. However, this group may be expected to experience good symptom control, and a population sample would have provided more support for conclusions about physician-assisted suicide. Data were available for only 29% of the original sample, so bias may be a concern. Most patients were in their final admission, and the time between diagnosis and death is likely to affect acceptance or awareness of prognosis, and thereby, will to live. The ethics of palliative-care research are important and central to Chochinov and colleagues’ study. Some might consider a twice daily interview schedule immediately before death to be onerous; it would certainly leave patients liable to fatigue. This intensity of attention from researchers is also likely to affect the validity of the results because of the Hawthorne effect. The timing of the measurements in relation to dispensing of analgesic medication may also be relevant, but was not presented. Health-services research should always have clinical relevance. The “will to live scores” were not given, so we do not know how the patients felt, only that their perceptions fluctuated. More importantly, the relevance of changes in score is unclear. For example, the preferences of the 82year-old woman showed changes of similar size over time and no overall trend. Did this indicate stability of views, or insensitivity of the measure? Age is almost certain to be relevant to will to live. Although most of the patients were elderly, they ranged in age from 31 to 89 years. Perhaps age should have been included in the model for analysis. The interpretation of quantitative results at the end of life is difficult. The authors suggest that as death approaches, psychological needs
become less important than physical needs. However, in a population of hospice patients, another explanation may be that their physical needs were being met. Qualitative methods may have been more helpful in exploring these unknown factors. We find it difficult to see how variations in dying patients’ will to live can inform the debate on assisted suicide. Lack of will to live does not necessarily mean a desire to be assisted to die. As Chochinov and colleagues point out, other groups show variations in their will to live, and diurnal variations in mood are characteristic of human experience. More palliative-care research is urgently needed, but as the researchers have shown, designing a study that does not provoke debate, is a major challenge. *Barbara Hanratty, Debbie A Lawlor Division of Public Health, Nuffield Institute for Health, Leeds LS2 9PL, UK (e-mail: [email protected]) 1
Chochinov HM, Tataryn D, Clinch JJ, Dudgeon D. Will to live in the terminally ill. Lancet 1999; 354: 816–19.
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 physicianassisted 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. 1,2 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-
THE LANCET • Vol 354 • December 11, 1999
Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med 1997; 155: 15–20. 5 Quill TE, Lo B, Brock DM. Palliative options of last resort. A comparison of voluntary stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia. JAMA 1997; 278: 2099–104.
Sir—Harvey Chochinov and colleagues 1 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. The factors involved in the will to live and patients who do not request to die differ substantially from desire to die and patients who request euthanasia or assisted suicide. Anyone who has watched a patient dying over weeks or months is well aware of fluctuation in will to live. The will to die through assisted suicide is qualitatively very different. Most patients who express no will to live do not have a will to die with medical assistance. Whereas will to live is reduced by anxiety and physical symptoms, desire for assisted suicide comes from personal attitudes and values. Chochinov et al did not study transience of a request to die; they studied will to live, and did not report any request to die by their patients. The second error was to use data for terminally ill patients who did not request to die to assess patients who did request to die. These are different patient groups, and the error is as great as it would be by use of the results of a drug in non-depressed patients to infer what would happen if the drug were given to depressed patients. Although no patients are reported as requesting assisted suicide, in a previous study only one patient requested euthanasia and the request was sustained until the patient d i e d . 2 This conforms with my experience of more than 30 patients who have requested physician-assisted suicide,3 in whom the requests were sustained and without any fluctuation. Chochinov and colleagues’ study is seriously flawed because it used the wrong measure for the wrong patient population. To be meaningful to the debate on euthanasia, we should study the desire to die in those who request assisted suicide. Thomas A Preston Department of Medicine, University of Washington, Seattle, WA 98112, USA
2084
1
Chochinov H, Tataryn D, Clinch JJ, Dudgeon D. Will to live in the terminally ill. Lancet 1999; 341: 816–19. 2 Chochinov HM, Wilson KG, Enns M, et al. Desire for death in the terminally ill. Am J Psychiatry 1995; 152: 1185–91. 3 Preston TA, Mero R. Observations concerning terminally ill patients who choose suicide. J Pharmaceut Care Pain Symptom Control 1996; 4: 183–92.
Sir—Harvey Chochinov and c o l l e a g u e s 1 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. Sample selection and patient attrition are common difficulties. The investigators made a practical choice to study voluntary hospice patients. However, this group may be expected to experience good symptom control, and a population sample would have provided more support for conclusions about physician-assisted suicide. Data were available for only 29% of the original sample, so bias may be a concern. Most patients were in their final admission, and the time between diagnosis and death is likely to affect acceptance or awareness of prognosis, and thereby, will to live. The ethics of palliative-care research are important and central to Chochinov and colleagues’ study. Some might consider a twice daily interview schedule immediately before death to be onerous; it would certainly leave patients liable to fatigue. This intensity of attention from researchers is also likely to affect the validity of the results because of the Hawthorne effect. The timing of the measurements in relation to dispensing of analgesic medication may also be relevant, but was not presented. Health-services research should always have clinical relevance. The “will to live scores” were not given, so we do not know how the patients felt, only that their perceptions fluctuated. More importantly, the relevance of changes in score is unclear. For example, the preferences of the 82year-old woman showed changes of similar size over time and no overall trend. Did this indicate stability of views, or insensitivity of the measure? Age is almost certain to be relevant to will to live. Although most of the patients were elderly, they ranged in age from 31 to 89 years. Perhaps age should have been included in the model for analysis. The interpretation of quantitative results at the end of life is difficult. The authors suggest that as death approaches, psychological needs
become less important than physical needs. However, in a population of hospice patients, another explanation may be that their physical needs were being met. Qualitative methods may have been more helpful in exploring these unknown factors. We find it difficult to see how variations in dying patients’ will to live can inform the debate on assisted suicide. Lack of will to live does not necessarily mean a desire to be assisted to die. As Chochinov and colleagues point out, other groups show variations in their will to live, and diurnal variations in mood are characteristic of human experience. More palliative-care research is urgently needed, but as the researchers have shown, designing a study that does not provoke debate, is a major challenge. *Barbara Hanratty, Debbie A Lawlor Division of Public Health, Nuffield Institute for Health, Leeds LS2 9PL, UK (e-mail: [email protected]) 1
Chochinov HM, Tataryn D, Clinch JJ, Dudgeon D. Will to live in the terminally ill. Lancet 1999; 354: 816–19.
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 physicianassisted 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. 1,2 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-
THE LANCET • Vol 354 • December 11, 1999