Screening for the Wish to Hasten Death at a Clinical Level

Transcription

1 Screening for the Wish to Hasten Death at a Clinical Level 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 Disclosure I do not have any affiliation (financial or otherwise) with a commercial organization that may have a direct or indirect connection to the content of my presentation. The research presented here was funded by the Canadian Institutes of Health Research.

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4 Objectives To review the highlights of a research program into the wish for hastened death To discuss the structured interview assessment of symptoms and concerns in palliative care To review the clinical characteristics of patients with advanced cancer who express a desire for death

5 How is the Wish to Hasten Death (WTHD) assessed in a clinically relevant way? How common is the WTHD? Questions Do patients with a WTHD differ from patients with no WTHD? How important is depression in WTHD? Are patients who express a WTHD suicidal? What is the overlap between WTHD and the desire for medical aid in dying? (euthanasia or physician-assisted suicide)?

6 Euthanasia A deliberate act of commission, such as administering a lethal injection, to end the life of a patient who has made an explicit request to die. Physician-Assisted Suicide Providing the means and information that can be used by a patient to take his or her own life in the future.

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9 Brown JH, Henteleff P, Barakat S, et al. Is it normal for terminally ill patients to desire death? Am J Psychiatry 1986; 143: Among 44 terminally ill patients, 10 (22.7%) had desired early death All 10 were found to be suffering from clinical depressive illness Is it normal? Maybe not.

10 Dr. Harvey Chochinov

11 Structured Diagnostic Interviewing in Mental Health Research SADS: Schedule for Affective Disorder and Schizophrenia ADIS: Anxiety Disorders Interview Schedule SCID: Structured Clinical Interview for DSM-5

12 Desire for Death Do you ever wish that your illness would progress more quickly so that your suffering could be over sooner? (Do you ever wish for death?) (How often do you feel this way? Is it quite constant or are there times when you don t feel that way?) (Do you pray for death to come soon?)

13 0 - None No desire for death Scoring System 1 - Minimal Only occasionally has fleeting thoughts 2 - Mild Sometimes feels he/she would like an early death, but not always 3 - Moderate Has a genuine desire for early death this is reported to be consistent over time, but is not consumed with the prospect 4 - Strong Most of the time feels a pervasive wish for death to come soon 5 - Severe Almost all of the time has a strong desire for death to come; prays for death 6 - Extreme Constant strong desire for death to come soon; thinks of little else; often prays for death

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15 5 Studies of the Desire for Death (%) Chochinov et al. (1995) N = 199 Wilson et al. (2000) N = 69 Price et al. (2011) N = 207 Julião et al. (2013) N = 75 Rosenfeld et al. (1999) N = 47 Range None % Minimal Mild % Moderate Strong Severe-Extreme %

16 Spontaneous Desire for Death Statements Güell E, Ramos A, Zertuche T, Pascual A. Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care. Palliat Support Care 2015; 13: consecutive palliative care patients in Barcelona 9.8% made a spontaneous statement about desire for death 7.3% desire for death 2.5% euthanasia

17 Lessons Occasional, transient wishes for death are not uncommon in the terminally ill (11-41%) A serious, apparently consistent desire for death is less common (3-20%) There may be cultural variation

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19 Assessment Issues in Palliative Care Comprehensive physical, social, existential, psychological Brief and simple Clinically and intuitively meaningful

20 Structured Interview of Symptoms and Concerns (SISC) Assesses common physical, social, psychological and existential symptoms and concerns

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22 Physical Symptoms Pain General malaise Weakness Drowsiness Nausea Breathlessness

23 General Malaise Do you feel generally sick or unwell? (How bad does it get?) (Does it interfere with activities you would like to do?) (Is it a problem for you?)

24 Social Concerns Social isolation Burden to others Financial concerns Loss of control

25 Self-Perceived Burden to Others With your current illness, do you feel that you have become a physical or emotional burden for your family? (Do you think your illness makes things hard for other people?) (How strongly do you feel that way?)

26 Existential Issues Dissatisfaction with life Loss of dignity Difficulty with acceptance Loss of resilience

27 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?)

28 Mental Health Anxiety Depression Loss of interest or pleasure Hopelessness

29 Depression Have you been feeling down or depressed? (How bad does it get?) (Does it come and go?) (Do you feel that way most of the time?) (Is it a problem for you?)

30 General Concerns Suffering Desire for death

31 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?)

32 Scoring System 0 - None Concern is not present 1 - Minimal Occasional but infrequent; not a problem 2 - Mild Occurs at a low level; sometimes a problem, but not often 3 - Moderate Definitely an issue; a significant problem 4 - Strong Experienced most of the time; a prominent, ongoing problem 5 - Severe Almost always present; troubling, serious, ongoing problem 6 - Extreme Always present; pervasive, consuming and constant problem

33 Clinical Thresholds None Minimal-Mild Moderate-Extreme Concern is not present Concern is present, but not regarded as an important problem Concern is present and identified as an important problem

34 Canadian National Palliative Care Survey Collaborating Centres Vancouver David Kuhl Kelowna Marina DeLuca Edmonton Karen Macmillan Robin Fainsinger Saskatoon Srini Chary Winnipeg Harvey Chochinov Ottawa Keith Wilson Pierre Allard Quebec City Pierre Gagnon St. John s Fiona O Shea

35 Recruitment: Flow Diagram Consults/Admissions N= 7,564 Approached N = 921 Agreed to Contact N = 520 Began Interview N = 405 Completed Interview N = 379

36 Interview Protocol 1. Demographics 2. Social Concerns 3. Religiosity 4. Existential Concerns 5. Attitudes Toward Euthanasia and Assisted Suicide 6. Pain and Physical Symptoms 7. Psychological Symptoms DSM-IV Disorders 8. Desire for Death 9. Suicidal Ideation 10. Satisfaction Questionnaire 11. Best and Worst Aspects of Care

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39 Medications Opioids Antidepressants Benzodiazepines Neuroleptics Clinical Characteristics N % Performance Scale (Mean) 54.6 Survival Duration (Median)

40 Demographic Characteristics N % Male / Female 169 / / 55.4 Age (Mean) 67.2 English / French 320 / / 12.9 Palliative Care Units

41 Desire for Death (N = 377) N % Combined % None Minimal Mild Moderate Strong Severe Extreme

42 Comparing Patients With and Without a Serious Desire for Death (% with moderate-extreme problems) 1. Physical Symptoms 2. Social-Relational Concerns 3. Existential Issues 4. Psychological Difficulties 5. Global Suffering

43 Physical Symptoms * * * * Desire for death No desire for death NS NS Percent Moderate Symptoms

44 Lesson The physical symptoms most related to the desire for death, once adequate palliative care has been implemented, are not acute crises of pain or dyspnea Rather, the patients feel chronically weak, ill and tired

45 Social-Relational Concerns * * * Desire for death No desire for death NS Percent Moderate Symptoms

46 Lesson Feeling isolated from others, and self-perceived burden are the social concerns most closely associated with the desire for death

47 Loss of resilience * Existential Issues Loss of dignity * Loss of control * Desire for death No desire for death Difficulty accepting NS Dissatisfaction with life NS Percent Moderate Symptoms

48 Lesson For these particular existential concerns, most patients feel that they are handling their situation reasonably well Loss of resilience, loss of dignity, loss of control, are relevant to some

49 Psychological Difficulties * * * Desire for death No desire for death * Percent Moderate Symptoms

50 Lesson All psychological symptoms are more prevalent, at a clinically significant level of severity, among patients with a desire for death

51 Prevalence of Depression and Anxiety Disorders No serious desire for death 20.2 Serious desire for death 52.2 % P-value <.001

52 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?)

53 Global Suffering(%) No Serious Desire for Death (n = 331) Serious Desire for Death (n = 46) P-value Suffering <.001

54 Lessons Occasional, transient desires for death are relatively common (11-41%) 3-20% of palliative patients have a serious and pervasive desire to die Patients with a serious desire for death are more likely to report clinically important difficulties in many physical, social, existential and psychological symptoms and concerns

55 Lesson Depression and anxiety disorders are more common in patients with a serious desire for death (about 2.5X), but By no means are all patients with a desire for death clinically anxious or depressed

56 Lesson The desire for death is associated with a high level of global suffering BUT is the desire for death in patients with advanced cancer the same as a desire to receive euthanasia or assisted suicide?

57 Future Interest in Hastened Death Can you foresee any future circumstances where you would consider asking for euthanasia or assisted suicide?

58 Current Interest in Hastened Death Based on the way you are feeling today, would you ask for euthanasia or assisted suicide now if they were legal and available to you? Are you certain about that?

59 Personal Interest in Euthanasia/Assisted Suicide N % Never Possibly, in the future Uncertain Yes, currently

60 Among Patients with a Serious Desire for Death (N = 46) 18/46 (39.1%) would have made a request for euthanasia or assisted suicide Not everyone who expresses a desire for death would want medical aid in hastening the process Are they thinking about suicide without medical aid?

61 Suicidal Ideation When a person who is seriously ill gets upset, depressed or feels hopeless, he (she) may even think about taking his (her) own life. Have you? (Have you thought about how you would do it?) (Have you actually done anything?) (What did you do?)

62 Suicidal Ideation (N = 375) N % Combined % No Suicidal Ideation Minimal (occasional thoughts of death) Mild (occasional thoughts of suicide) Moderate (often thinks of suicide) Strong (often thinks, has a plan) Severe (has made serious preparations) Extreme (has made a serious attempt) 3 0.8

63 Lessons Suicidal ideation was experienced by about 16% of patients, but mostly at a low level About 4% of patients reported thoughts of suicide at moderate frequency

64 Among Patients with a Serious Desire for Death (N = 46) 11/46 (23.9%) also reported serious suicidal ideation Only a minority of patients who express a desire for death are seriously contemplating suicide (but some are) Some patients may be actively thinking about suicide, or preparing for it, before they are really ready for death

65 Lesson There is considerable overlap between the desire for death, suicidal ideation, and desire for euthanasia/assisted suicide, but they are not synonymous Desire for death is the most common manifestation Mental health considerations are relevant in all 3 dimensions, but so are physical symptom management and consideration of social and existential concerns

66 Thank You