Responding to Expressions of the Wish to Hasten Death

Transcription

1 Responding to Expressions of the Wish to Hasten Death Keith G. Wilson, PhD, CPsych The Ottawa Hospital Rehabilitation Centre Ottawa, Canada Emeritus Clinical Investigator Ottawa Hospital Research Institute 2015 WeCare Workshop: Relieving Suffering at the End of Life Barcelona, Spain, November 27, 2015

2 Objectives To consider subtypes of the WTHD To review the reasons reported by patients for the wish for hastened death To summarize clinical recommendations around responding to WTHD

3 Nissim R, Gagliese L, Rodin G. The desire for hastened death in individuals with advanced cancer: A longitudinal qualitative study. Soc Sci Med 2009; 69: patients interviewed repeatedly over time Three distinct categories Hypothetical exit plan (not a current interest) Expression of despair Manifestation of letting go

4 Case 1 (Chochinov et al., 1995) A 72 year-old married man with prostate cancer who indicated that he was in severe pain. His wife had also been diagnosed recently with a major illness that prevented her from visiting. This patient met diagnostic criteria for major depression and had a history of three prior episodes. He received the highest score on the desire-for-death rating scale of anyone in the study.

5 Case 2 (Chochinov et al., 1995) A 61 year-old married woman with lung cancer. She had good palliative symptom control and experienced no pain. She was not depressed and had no psychiatric history. Rather, she recognized that her life was coming to an end, and she hoped to die while she retained her mental competence, reasonable bodily self-control and what she perceived as an acceptable level of dignity.

6 Pathways to the Desire for Death Expression of Despair Manifestation of Letting Go Depressed, Anxious? No Mental Health Problems? Pathway 1 Pathway 2

7 Wilson KG, et al. (in press). Mental disorders and the desire for death in patients receiving palliative care for cancer. BMJ Support Palliat Care. Examined 4 subgroups of patients from the Canadian National Palliative Care Survey Total N = 377 Low WTHD No Disorder (N = 264) 70.0% Low WTHD with Disorder (N = 67) 17.8% High WTHD No Disorder (N = 22) 5.8% High WTHD with Disorder (N = 24) 6.4%

8 Suffering In an overall, general sense, do you feel that you are suffering? (When all of the different problems and concerns are factored in together, how much would you say that you are suffering?) (How bad does it get?)

9 Suffering Low WTHD No Disorder (N = 264) 70.0% Low WTHD With Disorder (N = 67) 17.8% High WTHD No Disorder (N = 22) 5.8% High WTHD With Disorder (N = 24) 6.4%

10 Lessons Patients who are not depressed and have no desire for death have the lowest rates of problematic symptoms and concerns Importantly, most patients receiving palliative care (70%) fall into this category They have the lowest reports of moderate-extreme suffering (14%)

11 Lessons Patients with a desire for death and a concurrent depression/anxiety disorder (expression of despair) have a very high rate of suffering (83%) They also experience the some physical symptoms and social concerns more severely

12 If we take out people with depression or anxiety disorders (Pathway 1) are there still differences between those with or without a desire for death (Pathway 2)? Physical Symptoms No-Mild/ No Disorder (N = 264) Moderate-Extreme/ No Disorder (N = 22) P-value Pain 28.0% 31.8%.436 Breathlessness 24.6% 36.4%.224 Malaise 33.7% 63.6%.006* Drowsiness 24.6% 54.5%.004* Nausea 11.7% 27.3%.048* Weakness 53.0% 77.3%.022*

13 Social Concerns No-Mild/ No Disorder (N = 264) Moderate-Extreme/ No Disorder (N = 22) P-value Social Isolation 4.5% 31.8% <.001* Burden to Others 20.1% 45.5%.009* Financial Problems 7.6% 4.5%.503

14 Lessons Patients who are not depressed but still report a desire for death (letting go) are also more likely to experience certain symptoms and concerns more severely: Physical weakness, malaise, drowsiness, nausea Social isolation, burden to others

15 Symptoms and Concerns Physical Weakness* Malaise Drowsiness Nausea Social Burden to others* Isolation (attachment) Existential Resilience* Dignity Control Psychological Anxiety* Depression Loss of interest Hopelessness Letting Go Expression of Despair

16 Lesson There are important differences between patients who express a WTHD, depending on whether it reflects an expression of letting go or despair. Different patients may require different responses

17 Why Do Patients Express a Wish for Hastened Death?

18 Monforte-Royo C, et al. What lies behind the wish to hasten death? A systematic review and meta-ethnography from the perspective of patients. PLOS One 2012;7: e A systematic review of 7 qualitative studies identified 6 major themes: Loss of self (function, control, dignity) Fear (dying process, death) A desire to live, but not in this way A way to end suffering A kind of control

19 Wilson, KG, et al. Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychol 2007;26: Qualitative interviews with 22 patients who desired medical aid in dying: Perceived Futility Self-Perceived Burden to Others Readiness for Death Suffering Compassion Autonomy, Experience

20 Reasons for Desiring a Hastened Death Perceived Futility Recognition that the illness is fatal Increasing dependence Lingering Mere existence (Not in this way? Loss of self?)

21 Perceived Futility Because time is just dragging on. Lying in bed, day in and day out. It s too much.

22 Reasons for Desiring a Hastened Death Burden to others (Not in this way? Loss of self?)

23 Burden to Others I m a big burden to everybody. That s a big part. They might say it s not so, but of course, in their heart they feel it, because it is.

24 Readiness for Death Desire to die A good life (Not in this way?)

25 Readiness for Death I feel very strongly that my death is up and coming and there s nothing I could do about it so let s get on with it.

26 Suffering Pain Non-pain symptoms Negative outlook No pleasure (Fear? End suffering?)

27 Suffering Its just that I m very sick. My mood is low. I don t like it and that part I could do without.

28 Compassion Avoid worsening situation Easier death (End suffering? Control? Fear?)

29 Compassion I have become very preoccupied with how I will die, largely because the cancer is in my airway and, to the best of my knowledge, I will suffocate slowly.

30 Autonomy, Experience Right to choose Past experience (Control? Avoid suffering?)

31 Autonomy It is a real, real torture. I feel I should have the right to die when I want to die.

32 How Do Clinicians Feel About Expressions of the Wish to Hasten Death Discomfort Avoidance Uncertainty Misconceptions

33 Recommendations for Responding to the Wish for Hastened Death Abraham JL. Patient and family requests for hastened death. Hematology 2008: Bascom PB, Tolle SW. Responding to requests for physician-assisted suicide: These are uncharted waters for both of us. JAMA 2002;288: Emanuel LL. Facing requests for physician-assisted suicide: toward a practical and principled skill set. JAMA 1998;280: Hudson PL, et al. Responding to desire to die statements from patients with advanced disease: recommendations for health professionals. Palliat Med 2006;20: Olden M, et al. Suicide and the desire for hastened death in the terminally ill. In Chochinov HM & Breitbart W, Handbook of Psychiatry in Palliative Medicine, Oxford University Press, Tulsky JA, et al. Responding to legal requests for physician-assisted suicide. Ann Intern Med 2000;132:

34 Hudson PL, et al. Responding to desire to die statements from patients with advanced disease: recommendations for health professionals. Palliat Med 2006;20: The aim is to (a) explore issues underpinning the statements, (b) identify the critical clinical issues, and (c) discuss the interpersonal issues involved.

35 Tulsky JA, et al. Responding to legal requests for physician-assisted suicide. Ann Intern Med 2000; 132: A conversation about a patient s desire to end his or her life can be a form of therapy, and discussion itself may therefore palliate. It is an opportunity to address and respond to the patient s greatest fears and concerns.

36 Issues Underpinning the Statements WTHD statements are not always literal requests for death Ambivalence Stability over time What are they expressing? Need for control Letting go Despair

37 Issues Underpinning the Statements Need for Control Information (prognosis, course) Develop a shared understanding of the goals of treatment Involvement in decision-making Reassurance commitment, non-abandonment, symptom control Forms of comfort and support that are available Frequent check in

38 Critical Clinical Issues Physical Symptoms The special case of pain Non-pain symptoms Comfort and support Psychological and physical symptoms interact

39 Critical Clinical Issues Mental Health Problems Depression Anxiety, panic Temporal stability Some psychotherapeutic principles may help Cognitive therapy Behavioral activation Problem-solving

40 Existential Concerns Not necessarily highly distressing for all patients Are you worried or concerned about the future? Is that a problem for you? How much does it bother you? minimal-mild in 38% Moderate-extreme in 29%

41 Percent de Faye BJ, Wilson KG, et al. Stress and coping with advanced cancer. Palliat Support Care 2006;4: Existential Concerns Moderate-Extreme Distress Minimal-Mild Distress Dissatisfaction with Life Loss of Dignity Loss of Meaning Concern for Future

42 Existential Concerns Can you tell me more about those concerns? death and dying (60%) aftermath concern for others (17%)

43 Facts over fear Existential Concerns Fear Identify the concerns, underlying need for reassurance Discuss options for symptom control Commitment to being available Allow expression of concerns Empathic listening, reflection, clarification

44 Critical Clinical Issues Existential Concerns Open discussion of worries Establishing short term goals Staying engaged in the moment Appreciation and gratitude Milestones Personal projects Legacy Life review

45 Critical Clinical Issues Social and Family Concerns Burden to others Bringing couples, families together Mindreading Isolation Some withdrawal is normal Opportunities for interaction (staff, volunteers, other patients, hospice) Group psychotherapy

46 Critical Clinical Issues Social and Family Concerns Other social concerns Anger Unfinished business Health care system

47 Interpersonal Issues You may have become a central figure in the patient s life Do you feel it is your job to talk them out of it? Validate that you have heard the request Be open to exploration Monitor your own reaction Challenge your own negative thoughts Discuss with colleagues

48 Interpersonal Issues You may have become a central figure in the patient s life Be Present

49 Post Script Where are they now?

50 Systematic Review Burden to Others (Christine McPherson, John Kowal) Qualitative Interviews Correlation with Spousal Burden Other Populations stroke chronic pain Association with Suicide

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55 Dignity Do you feel that you are able to maintain your dignity and self-respect? (Even though you may need help with some things, is your sense of dignity basically intact?) (Do your medical problems make you feel ashamed, degraded or embarrassed?) (Do you feel devalued as a person?)

56 Solomon BK, Wilson KG, et al. Loss of dignity in severe chronic obstructive pulmonary disease. J Pain Sympt Manage in press Loss of Dignity in Severe/Very Severe COPD (N = 195) Prevalence = 12.8% N of Patients None Minimal-Mild Moderate-Extreme Loss of Dignity

57 Loss of Dignity Score Pre-Post Rehabilitation Scores for Loss of Dignity in COPD (N = 25) Extreme - 6 Severe - 5 Strong - 4 Moderate - 33 Mild - 2 Minimal - 1 None - 0 Admission Discharge

58 Thank You