Purpose: Patients’ desire for hastened death within the context of advanced disease and palliative care is a controversial topic, frequently discussed in the international literature. Much of the discussion has focused on opinion and debate about ethical matters related to hastened death. Not many research studies seem to have specifically targeted why palliative care patients may desire hastened death, and few have focused on clinical guidelines for responding to such requests.
Methods: Using a systematic literature review process, we evaluated the research evidence related to the reasons patients express a desire for a hastened death, and the quality of clinical guidelines in this area.
Results: Thirty-five research studies met the inclusion criteria related to reasons associated with a desire for hastened death. The factors associated with a desire to die were often complex and multifactorial; however, psychological, existential and social reasons seem to be more prominent than those directly related to physical symptoms, such as pain. Much of the evidence supporting the reasons for these statements is based on: (a) patients’ perceptions of how they may feel in the future, and (b) health professionals’ and families’ interpretations of why desire to die statements may have been made. Several publications provided expert opinion for responding to requests for physician-assisted suicide and euthanasia. In keeping with this limited research base, there is a lack of evidence-based guidelines for clinical care that addresses the desire to die among terminally ill patients. Most literature has focused on discipline specific responses, with minimal exploration of how clinicians might respond initially to a statement from a patient regarding a desire to die.
Conclusions: In order to advance understanding of the complex issue of desire for hastened death in the context of palliative care, research should focus on studies with patients who have actually made a desire to die statement and the development of guidelines to help health professionals respond. Direction for research in this area is described.
Mystakidou K , Rosenfeld , Parpa E , et al. Desire for death near the end of life: the role of depression, anxiety and pain . Gen Hosp Psychiatry2005; 27: 258-262 .
2.
O'Mahony S , Goulet J , Kornblith A , et al. Desire for hastened death, cancer pain and depression: report of a longitudinal observational study . J Pain Symptom Manage2005; 29: 446-457 .
3.
Mak YYW . Voices of the terminally ill: uncovering the meaning of desire for euthanasia . Palliat Med2005; 19: 343-350 .
4.
Hanks G.The proposed assisted dying bill in the UK-Editorial . Palliat Med2005; 19: 441-442 .
5.
Finlay IG , Wheatley VJ , Izdebski C.The House of Lords Select Committee on the assisted dying for the terminally ill bill: implications for specialist palliative care . Palliat Med2005; 19: 444-453 .
6.
Johansen S , Hølen JC , Kaasa S , Loge JH , Materstvedt LJ.Attitudes towards , and wishes for, euthanasia in advanced cancer patients at a palliative medicine unit . Palliat Med2005; 19: 454-460 .
7.
Materstvedt LJ , Clark D , Ellershaw J , et al. Euthanasia and physician-assisted suicide: a view from EAPC Ethics Task Force . Palliat Med2003; 17: 97-101 .
8.
Arnold E , Artin K , Person J , Griffith D.Consideration of hastening death among hospice patients and their families . J Pain Symptom Manage2004; 27: 523-532 .
9.
Magnusson RS.Angels of death: exploring the euthanasia underground. Melbourne University Press , 2002.
10.
Emmanuel E.Euthanasia and physician assisted suicide: a review of empirical data from the United States . Arch Intern Med2002; 162: 142-152 .
11.
Pessin H , Potash M , Breitbart W.Diagnosis, assessment, and depression in palliative care. In Lloyd-Williams M ed. Psychosocial issues in palliative care. Oxford University Press, 2003: 81-103.
12.
Bascom PB , Tolle SW.Responding to requests for physician assisted suicide: ‘These are uncharted waters for both of us’ . JAMA2002; 288: 91-98 .
13.
Chochinov H , Wilson K , Enns M.Desire for death in the terminally ill . Am J Psychiatry1995; 152: 1185-1191 .
14.
Emanuel EJ , Fairclough DL , Emanuel LL.Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers . JAMA2000; 284: 2460-2468 .
15.
Mishara BL.Synthesis of research and evidence on factors affecting the desire of terminally ill or seriously chronically ill persons to hasten death . OMEGA1999; 39: 1-70 .
16.
Mayland C.Suicidal intent in the palliative care setting . J Palliat Care2004; 20: 119-120 .
17.
Rosenfeld B.Studying desire for death: methodological issues in end-of-life research. In Portenoy R , Bruera E eds. Issues in palliative care research. Oxford University Press , 2003: 293-305.
18.
Akechi T , Okuyama T , Sugawara Y , Nakano T , Shima Y , Uchitomi Y.Suicidality in terminally ill Japanese patients with cancer . Cancer2004; 100: 183-191 .
19.
Tolle SW , Tilden VP , Drach LL , Fromme EK , Perrin NA , Hedberg K.Characteristics and proportion of dying Oregonians who personally consider physician-assisted suicide . J Clin Ethics2004; 15: 111-118 .
20.
Tulsky JA , Ciampa R , Rosen EJ.Responding to legal requests for physician-assisted suicide. University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel . Ann Intern Med2000; 132: 494-499 .
21.
Mak Y , Elwyn G.Use of hermeneutic research in understanding the meaning of desire for euthanasia . Palliat Med2003; 17: 395-402 .
22.
Gavrin JR.Bibliographic databases on the World Wide Web: Nathan Cherny's palliative care resource . J Pain Palliat Care Pharmacother2004; 18: 75-78 .
23.
Ellershaw J , Wilkinson S.Care for the dying: a pathway to excellence. Oxford University Press , 2003.
24.
Doyle D , Hanks G , MacDonald N.Oxford textbook of palliative medicine, third edition. Oxford University Press , 2003.
25.
Regnard C , Hockley J.A guide to symptom relief in palliative care, fifth edition. Radcliffe Medical Press , 2004.
26.
Woodruff R.Palliative medicine, fourth edition. Oxford University Press , 2005.
27.
Therapeutic guidelines . Palliative care, second edition, Therapeutic Guidelines Limited: Melbourne , 2005.
28.
MacDonald N , Oneschuk D , Hagen N , Doyle D eds. Palliative medicine: a case-based manual. Oxford University Press , 2005.
National Health and Medical Research Council Australia . A guide to the development, implementation and evaluation of clinical practice guidelines. NHMRC, 1998.
31.
Cole RM.Communicating with people who request euthanasia . Palliat Med1993; 7: 139-143 .
32.
Van Loon R.Desire to die in terminally ill people: a framework for assessment and intervention . Health Soc Work1999; 24: 260-268 .
33.
Muskin PR.The request to die: role for a psychodynamic perspective on physician-assisted suicide . JAMA1998; 279: 323-328 .
34.
Faber-Langendoen K , Karlawish J.Should assisted suicide be only physician assisted?Ann Intern Med2000; 132: 482-487 .
35.
Emanuel L.Facing requests for physician-assisted suicide: toward a practical and principled clinical skill set . JAMA1998; 280: 643-647 .
36.
Marzuk PM.Suicide and terminal illness . Death Stud1994; 18: 497-512 .
37.
Caplan A , Snyder L , Faber-Langendoen K.The role of guidelines in the practice of physician-assisted suicide . Ann Intern Med2000; 132: 476-481 .
38.
Bloch S , Billings JA.Patient request to hasten death . Arch Intern Med1994; 154: 2039-2047 .
39.
Cohen LM , Steinberg MD , Hails KC , Dobscha SK , Fischel SV.Psychiatric evaluation of death-hastening requests. Lessons from dialysis discontinuation [In Process Citation] . Psychosomatics2000; 41: 195-203 .
40.
Back AL , Starks MPH , Hsu C , Gordon JR , Bharucha A , Pearlman RA.Clinician-patient interactions about requests for physician-assisted suicide . Arch Intern Med2002; 162: 1257-1265 .
41.
Kohlwes RJ , Koepsell TD , Rhodes LA , Pearlman RA.Physicians’ responses to patients’ requests for physician-assisted suicide . Arch Intern Med2001; 161: 657-663 .
42.
Oregon Department of Human Services . In Services DoH ed. Sixth Annual Report on Oregon's Death with Dignity Act. Department of Human Services, 2004: 24-24.
43.
Filiberti A , Ripamonti C , Totis A , et al. Characteristics of terminal cancer patients who committed suicide during a home palliative care program . J Pain Symptom Manage2001; 22: 544-553 .
44.
Pearlman R , Hsu CS , Back A , et al. Motivations for physician-assisted suicide . J Intern Med2005; 20: 234-239 .
45.
National Health and Medical Research Council Australia. Clinical practice guidelines for the psychosocial care of adults with cancer, 2003.
46.
Breitbart W , Chochinov H , Passik S.Psychiatric symptoms in palliative medicine. In Doyle D , Cherny N , Calman K eds. Oxford textbook of palliative medicine. Oxford University Press , 2004: 746-771.
47.
Lo B , Ruston D , Kates LW , et al. Discussing religious and spiritual issues at the end of life: a practical guide for physicians . JAMA2002; 287: 749-754 .
48.
Breitbart W.Spirituality and meaning in supportive care . Support Care Cancer2002; 10: 272-280 .
49.
Walter T.Spirituality in palliative care: opportunity or burden?Palliat Med2002; 16: 133-139 .
50.
Baldacchino D , Draper P.Spiritual coping strategies: a review of the nursing research literature . JAdv Nurs2001; 34: 833-841 .
51.
Bannink M , Van Gool AR , van der Heide A , van der Maas PJ.Psychiatric consultation and quality of decision making in euthanasia . Lancet2000; 356: 2067-2068 .
52.
Rhodes P , Shaw S.Informal care and terminal illness . Health Soc Care Comm1999; 7: 39-50 .
53.
Rosenfeld B , Breitbart W , Stein K , et al. Measuring desire for death among patients with HIV/AIDS: the schedule of attitudes toward hastened death . Am J Psychiatry1999; 156: 94-100 .
54.
Eagley A , Chaiken S.The psychology of attitudes. Hardcourt, 1993.
55.
Bharucha AJ , Pearlman RA , Back AL , Gordon JR , Starks H , Hsu C.The pursuit of physician-assisted suicide: role of psychiatric factors . J Palliat Med2003; 6: 873-883 .
56.
Pessin H , Rosenfeld B , Burton L , Breitbart W.The role of cognitive impairment in desire for hastened death: a study of patients with advanced AIDS . Gen Hosp Psychiatry2003; 25: 194-199 .
57.
Nunez Olarte JM.Research on attitudes towards euthanasia in terminally ill patients . Eur J Palliat Care2003; 10: 68-71 .
58.
Engelhardt HT , Smithtltis A.End-of-life: the traditional Christian view . Lancet2005; 366: 1045-1049 .
59.
Kelly BJ , Burnett P , Pelusi D , Badger S , Varghese F , Robertson M.Association between clinician factors and a patient's wish to hasten death: terminally ill cancer patients and their doctors . Psychosomatics2004; 45: 311-318 .
60.
Wilson KG , Chochinov HM , de Faye BJ , Breitbart W.Diagnosis and management of depression in palliative care. In Chochinov HM , Breitbart W eds. Handbook of psychiatry in palliative medicine. Oxford University Press , 2000: 25-50.
61.
Durkin I , Kearney M , O'siorain L.Psychiatric disorder in a palliative care unit . Palliat Med2003; 17: 212-218 .
62.
Casarett D.Assessing decision making capacity in the setting of palliative care research . J Pain Symptom Manage2003; 25: S6-S13 .
Pfeifer MP , Mitchell CK , Chamberlain L.The value of disease severity in predicting patient readiness to address end-of-life issues . Arch Intern Med2003; 163: 609-612 .
65.
Chochinov H , Tataryn D , Clinch J , Dudgeon D.Will to live in the terminally ill . Lancet1999; 354: 816-819 .
66.
Volker DL.Methodological issues associated with studying an illegal act-assisted dying . Adv Nursing Sci2004; 27: 117-128 .
67.
Hudson P , Aranda S , Kristjanson L , Quinn K.Mini-mising gate keeping in palliative care research . Eur J Palliat Care2005; 12: 165-169 .
68.
Chochinov HM , Hack T , McClement S , Kristjanson L , Harlos M.Dignity in the terminally ill: a developing empirical model . Soc Sci Med2002; 54: 433-443 .
69.
Wilson K , Scott J , Graham I , et al. Attitudes of terminally ill patients toward euthanasia and physician-assisted suicide . Arch Intern Med2000; 160: 2454-2460 .
70.
Sullivan M , Rapp S , Fitzgibbon D , Chapman CR.Pain and the choice to hasten death in patients with painful metastatic cancer . J Palliat Care1997; 13: 18-28 .
71.
Chochinov HM , Hack T , Hassard T , Kristjanson LJ , McClement S , Harlos M.Understanding the will to live in patients nearing death . Psychosomatics2005; 46: 7-10 .
72.
Suarez-Almazor ME , Newman C , Hanson J , Bruera E.Attitudes of terminally ill cancer patients about euthanasia and assisted suicide: predominance of psycho-social determinants and beliefs over symptom distress and subsequent survival . J Clin Oncol2002; 20: 2134-2141 .
73.
Breitbart W , Rosenfeld B , Pessin H , et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer . JAMA2000; 282: 2907-2911 .
74.
Breitbart W , Rosenfeld B , Passik S.Interest in physician-assisted suicide among ambulatory HIV-infected patients . Am J Psychiatry1996; 153: 238-242 .
75.
Ganzini L , Johnston W , McFarland B , Tolle S , Lee M.Attitudes of patients with amyotrophic lateral sclerosis and their care givers toward assisted suicide . New Engl J Med1998; 339: 967-973 .
76.
Mystakidou K , Parpa E , Katsouda E , Galanos A , Vlahos L.Influence of pain and quality of life on desire for hastened death in patients with advanced cancer . Int J Palliat Nurs2004; 10: 476-483 .
77.
Chochinov HM , Wilson KG , Enns M , Lander S.Depression, hopelessness, and suicidal ideation in the terminally ill . Psychosomatics1998; 39: 366-370 .
78.
Kelly B , Burnett P , Pelusi D , Badger S , Varghese F , Robertson M.Factors associated with the wish to hasten death: a study of patients with terminal illness . Psychol Med2003; 33: 75-81 .
79.
Lavery JV , Boyle J , Dickens BM , Maclean H , Singer PA.Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: a qualitative study . Lancet2001; 358: 362-367 .
80.
Coyle N , Sculco L.Expressed desire for hastened death in seven patients living with advanced cancer: a phenomenologic inquiry . Oncol Nurs Forum2004; 31: 699-708 .
81.
Seale C , Addington-Hall J.Euthanasia: why people want to die earlier . Soc Sci Med1994; 39: 647-654 .
82.
Ganzini L , Harvath T , Jackson A , Goy E , Miller L , Delorit M.Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide . New Engl J Med2002; 347: 582-588 .
83.
Emanuel EJ , Daniels ER , Fairclough DL , Clarridge BR.The practice of euthanasia and physician-assisted suicide in the United States: adherence to proposed safeguards and effects on physicians [see comments] . JAMA1998; 280: 507-513 .
84.
Haverkate I , Onwuteaka-Philipson B , Kostense P , van der Wal G , van der Maas P.Refused and granted requests for euthanasia and assisted suicide in the Netherlands: interview study with structured questionnaire . BMJ2000; 321: 865-866 .
85.
Marquet RL , Visser GJ , Spreeuwenberg P , Peters L.Twenty five years of requests for euthanasia and physician assisted suicide in Dutch general practice: trend analysis . BMJ2003; 327: 201-202 .
86.
Meier DE , Emmons C , Wallenstein S , Quill T , Morrison RS , Cassel C.A national survey of physician-assisted suicide and euthanasia in the United States . New Engl J Med1998; 338: 1193-1201 .
87.
Back AL , Wallace JI , Starks H , Pearlman RA.Physician assisted suicide and euthanasia in Washington state: patient requests and physician responses . JAMA1996; 275: 919-925 .
88.
Kissane DW , Street A , Nitschke P.Seven deaths in Darwin: case studies under the Rights of the Terminally Ill Act, Northern Territory, Australia . Lancet1998; 352: 1097-1102 .
89.
Volker DL.Oncology nurses experiences with requests for assisted dying from terminally ill patients with cancer . Oncol Nurs Forum2001; 28: 39-49 .
