Dignity, Personhood and the Culture of Medicine Harvey Max Chochinov OC MD PhD FRSC Canada Research Chair in Palliative Care Director, Manitoba Palliative Care Research Unit Distinguished Professor, Department of Psychiatry University of Manitoba, CancerCare Manitoba
Stability of Will to Live with Pain in an 80 Year-old Patient with Colorectal Cancer 60 -- Will to Live 50 Will to Live & ESAS Score 40 30 20 10 0 0 50 100 150 200 250 300 Observation Number (two per day) Lancet. 1999;354:816-9.
Stability of Will to Live with Pain in an 80 Year-old Patient with Colorectal Cancer 60 50 Will to Live Will to Live & ESAS Score ---- Pain 40 30 20 10 0 0 50 100 150 200 250 300 Observation Number (two per day) Lancet. 1999;354:816-9.
Distribution of Desire for Death Responses Responses Prevalence (%) 0 No information 1 (0.5%) 1 No desire for early death 110 (55%) 2 Slight; has had occasional or fleeting thoughts 60 (30%) 3 Mild; has had a desire for early death, but not 12 (6.0%) always 4 Moderate; has a genuine and consistent desire 15 (7.5%) for early death 5 Severe; has had difficulty diverting thoughts 1 (0.5%) from desire to die; prays for death 6 Extreme; obsessed with desire to die; talks of 1 (0.5%) little else; asks for euthanasia; prays for death almost constantly Am J Psychiatry. 1995;152:1185-91.
Pain +.33 +.47 Depression -.15 Desire to Die -.25 Family Support Chochinov, Wilson. Canadian Journal of Psychiatry 1995
Distribution of Sense of Dignity Responses Responses Prevalence 0 No sense of lost dignity 114 (53%) 1 Minimal sense of lost dignity 64 (30%) 2 Mild ; sense of lost dignity occasionally; 19 (9%) regarded as minor problem 3 Moderate sense of lost dignity; regards 11 (5%) as significant problem 4 Strong ; feels clear sense of lost dignity 5 (2%) most of time 5 Severe ; clear sense of lost dignity almost 0 (0%) always present 6 Extreme ; sense of lost dignity virtually 0 (0%) constant Chochinov et al. Lancet. 1999;354:816-9
• Desire for death (p < 0.0014) • Loss of will to live (p < 0.013) • Depression (p < 0.0084) • Hopelessness (p < 0.020) • Anxiety (p < 0.003) Chochinov et al. Lancet. 2002;360:2026 ‐ 30.
• Pain (p < 0.048) • Difficulty with bowel functioning (p < 0.026) • Physical appearance (p < 0.002) Chochinov et al. Lancet. 2002;360:2026 ‐ 30.
• Bathing (OR = 8.45 [1.50 to 47.70]; p < 0.016) • Dressing (OR = 2.79 [0.95 - 8.15]; p < 0.061) • Incontinence (OR = 3.47 [1.27 - 9.51]; p < 0.016) Chochinov et al. Lancet. 2002;360:2026 ‐ 30.
Chochinov et al. Social Science and Medicine 2002
Should Euthanasia or Physician- Assisted Suicide be Legalized? YES NO Significance N (%) 238 (62.8%) 98 (25.9) Age 66.0 69.2 p = .030 Religiosity 8.7 11.6 p < .001 Index
Reasons for Legalization Futility of Continued Existence Suffering Autonomy Experience Altruism Compassion
Reasons Against Legalization Religious Concerns Moral Opposition Negative Possibilities Physician ’ s Role
Past Interest in Hastened Death If they were legal, do you think you might have asked for euthanasia or physician-assisted suicide at any point since you became ill? N % Yes 36 9.5
Reasons for Past Interest in Hastened Death (N = 23) Reason N % Uncontrolled pain 10 52.6 Other physical symptoms 8 42.1 Psychological distress 6 26.3 General suffering 3 15.8 Low quality of life 2 10.5 Shock of prognosis 2 10.5
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?
Personal Interest in Physician- Hastened Death N % Never 148 39.1 Possibly, In the Future 151 39.8 Uncertain 58 15.3 Yes, Currently 22 5.8
Demographic Characteristics Current Desire No Current Sig. for PAS Desire for PAS (N = 22) (N = 357) Males, N (%) 12 (54.5) 157 (44.0) Females, N (%) 10 (45.5) 200 (56.0) NS Age (Mean) 66.6 67.2 NS Religiosity Index (Mean) 7.8 9.7 .009 Social Network (Mean) 10.8 13.8 NS
Clinical Characteristics Current Desire No Current Sig. for PAS Desire for PAS (N = 22) (N = 357) Performance Scale (Mean) 48.2 54.9 .024 Survival Duration (Median) 55.5 63.0 NS Opioids, N (%) 19 (86.4) 273 (76.7) NS Neuroleptics 8 (36.4) 60 (16.9) .039 Antidepressants, N (%) 6 (27.3) 65 (18.3) NS Benzodiazepines 15 (68.2) 158 (44.4) .045
Mental Health Current Desire No Current for PAS Desire for PAS Significance (N = 22) (N = 357) Any Depressive 9 (40.9) 69 (19.3) .026 Disorder , N (%) Any Anxiety 6 (27.3) 46 (12.9) .100 Disorder, N (%) More than One 6 (27.3) 32 (9.0) .015 Disorder, N (%)
Problems Reported by More Than 50% of the Patients Who Desire PAS General Malaise Drowsiness Weakness Sense of Burden Suffering Desire for Death
Healthcare • Cognitive/Knowledge based • Technical/procedural Healthcaring • Patient and family satisfaction • Gateway to disclosure • Complaints/litigation • Professional burnout
Dignity Model Questions N=211 % Agree or # Variable strongly agree 1 thinking how life might end 41.7% 2 distressing symptoms 53.1% 3 uncertainly regarding illness 59.2% 4 feeling depressed or anxious 59.7% 5 feeling your privacy has been reduced 65.9% 6 changes in physical appearance 66.4% 7 not being able to accept things the way 71.6% they are Chochinov HM, Krisjanson LJ, Hack TF, Hassard T, McClement S, Harlos M. Dignity in the terminally ill: revisited. J Palliat Med. 2006;9:666-72.
Dignity Model Questions 8 not having a meaning spiritual life 73.7% 9 no longer feeling who you were 74.4% 10 not being able to mentally fight 74.5% 11 not being able to continue with usual routines 74.9% 12 feeling life no longer has meaning or purpose 75.1% 13 not being able to think clearly 77.3% 14 not being able to carry out important roles 78.5% 15 tasks of daily living 79.6%
Dignity Model Questions 17 not feeling worthwhile or valued 81.4% 18 bodily functions 82.9% 19 not feeling you made a meaning or lasting 83.3% contribution 20 feeling you don't have control over your life 83.7% 21 feeling a burden to others 87.1% 22 not being treated with respect or understanding 87.1%
Chochinov et al. Social Science and Medicine 2002
Generativity Social Support Continuity of Self Maintenance Care Tenor Dignity Therapy of Pride Aftermath Concerns Maintaining Hope Role Preservation Chochinov HM. Dignity-conserving care-a new model for palliative care. JAMA.2002
Dignity Therapy Study: Preliminary Data (n=100) Satisfied or highly satisfied 91% Helpful or very helpful 86% Increased Sense of Dignity 76% Increased sense of purpose 68% Heightened sense of meaning 67% Increased will to live 47% Believed it had or would help their family 81%
Family Dignity Follow-up Data (n=60) Question Percentage Helped patient 95% Gave patient heightened sense of purpose 71.7% Heightened patient's sense of dignity 78.3% Helped patient prepare for death 65% Was as important as any other aspect of 64.6% patient ’ s care Reduced patient ’ s suffering 43.3% Helped surviving family during time of grief 78% Will continue to comfort family 76.7% Recommend it to other patients and families 95%
Dignity Therapy Data Overview • 17 articles; 12 quantitative studies; establish high satisfaction; high acceptability • Benefits for themselves and their families • Increased sense of meaning and purpose. • Studies with higher base rates of distress indicate lower depression, anxiety; and increased hopefulness
Personhood on the Clinical Radar “ What should I know about you as a person to help me take the best care of you that I can? ”
Patient Dignity Question (PDQ) Mrs. F. says that because of the residential school, she always had a hard time trusting people. She in fact moved 82 times so as not to let anyone get too close to her. While this has gotten better over time, she still struggles with being able to trust people. She wants to, but it is hard for her. She sometimes worries that she won ’ t be told the whole truth, or that people will see her as not being deserving of the whole truth. She appreciates people being friendly towards her, but is frightened of authority figures. ‘ Authority scares me, but I ’ m not as bad as I used to be ’ .
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