and Dignity What is dignity (at end of life?) [JSM] Learning Objectives [JSM]

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1 Dignity Therapy and Dignity ty-in in- n-care Harvey Max Chochinov OC OM MD PhD FRSC Canada Research Chair in Palliative Care Director, Manitoba Palliative Care Research Unit Professor, Department of Psychiatry, Family Medicine and Community Health Sciences University of Manitoba, CancerCare Manitoba With gratitude to Dr. Harvey Max Chochinov and experiences at the 7th Annual International Workshop Janet S. McCord, PhD, FT Associate Professor of Thanatology Chair: Edwin S. Shneidman Department of Thanatology Marian University of Fond du Lac Learning Objectives [JSM] Describe the Model of Dignity in the terminally ill and what this means for endof-life care Discuss research evidence supporting the Model of Dignity Describe the A, B, C, D of dignity conserving care & Patient Dignity Question Discuss Dignity Therapy intervention What is dignity (at end of life?) [JSM] Concept of Catholic Social Teaching: dignity is rooted in human creation in likeness and image of God Basis of fundamental human rights in international law A good death and has to do with quality of life Important when it is undermined Distribution of Desire for Death Responses Responses 0 No information 1 No desire for early death 2 Slight; has had occasional or fleeting thoughts 3 Mild; has had a desire for early death, but not always 4 Moderate; has a genuine and consistent desire for early death 5 Severe; has had difficulty diverting thoughts from desire to die; prays for death 6 Extreme; obsessed with desire to die; talks of little else; asks for euthanasia; prays for death almost constantly Prevalence (%) 1 (0.5%) 110 (55%) 60 (30%) 12 (6.0%) 15 (7.5%) 1 (0.5%) 1 (0.5%) Am J Psychiatry. 1995;152:

2 Stability of Will to Live with Pain in an 80 Year ar-old Patient with Colorectal Cancer Pain Family Support +.33 Depression Desire to Die Will to Live & ESAS Score Will to Live Chochinov, Wilson. Canadian Journal of Psychiatry Observation Number (two per day) Lancet. 1999;354: Stability of Will to Live with Pain in an 80 Year-old Patient with Colorectal Cancer 60 Will to Live & ESAS Score Will to Live ---- Pain Observation Number (two per day) Lancet. 1999;354: Reasons - According to Physicianss - Patients Requested Euthanasia/PAS Loss of Dignity - 57% Pain - 49% Unworthy Dying - 49% Being Dependent - 33% Tiredness of Life - 23% Pain Alone -5% Van der Maas Lancet 1991 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; regarded as minor problem 3 Moderate sense of lost dignity; regards as significant problem 4 Strong; feels clear sense of lost dignity most of time 5 Severe; clear sense of lost dignity almost always present 6 Extreme; sense of lost dignity virtually constant 19 (9%) 11 (5%) 5 (2%) 0 (0%) 0 (0%)

3 Desire for death (p < ) Loss of will to live (p < 0.013) Depression (p < ) Hopelessness (p < 0.020) Anxiety (p < 0.003) Pain (p < 0.048) Difficulty with bowel functioning (p < 0.026) Physical appearance (p < 0.002) Bathing (OR = 8.45 [1.50 to 47.70]; p < 0.016) Dressing (OR = 2.79 [ ]; p < 0.061) Incontinence (OR = 3.47 [ ]; p < 0.016) Chochinov et al. Social Science and Medicine 2002

4 A Dignity Conserving Care: Attitude B: Behavior Dignity Conserving Care Care provider attitude has a profound influence on patients sense of dignity C: Compassion Dignity Conserving Care D: Dialogue D: Dialogue Dignity Conserving Care

5 Personhood ood on the Clinical Radar Social Support Generativity Continuity of Self What should I know about you as a person to help me take the best care of you that I can? Care Tenor Dignity Therapy Maintenance of Pride Aftermath Concerns Role Preservation Maintaining Hope Chochinov HM. Dignity-conserving care-a new model for palliative care. JAMA.2002 Dignity Therapy: Step by Step 1. Identify eligible patient; 2. Provide full explanation of Dignity Therapy; 3. Share Dignity Therapy Question Framework; 4. Obtain framing history for Dignity Therapy; 5. Arrange Dignity Therapy session; 6. Conduct Dignity Therapy session; 7. Follow editing protocol to create generativity document; 8. At follow-up session, read document to patient; address any final editing issues; 9. Provide patient final generativity document. Dignity Therapy Study: Preliminary Data 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% (n=100)

6 Family Dignity Follow-up Data (n=60) Question Helped patient 95% Percentage 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% Post Study Survey Questions The study arm has Palliative Care Support Study Patient Data Standard Care (SC) Client Centered Care (CCC) Dignity Therapy (DT) χ 2 2 df p- value been as helpful as any other aspect of my health care given me a sense of looking after unfinished business made me feel like I am still me made me feel that I am still able to carry out important tasks or fill an important role made me feel that life was more meaningful given me a heightened sense of purpose Post Study Survey Questions The study arm has Palliative Care Support Study Patient Data Standard Care (SC) Client Centered Care (CCC) Dignity Therapy (DT) χ 2 p- value Arms DT Significantl y Outperfor med improved my spiritual well being CCC lessened my sense of sadness and SC depression been satisfactory SC been helpful to me CCC, SC improved my quality of life CCC, SC increased my sense of dignity CCC, SC or will be of help to my family CCC, SC or could change way my family sees of appreciates me CCC, SC In general, I am satisfied with my psychosocial care 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

7 Dignity Therapy Knowledge Translation TRIALS Sweden Denmark Spain Portugal Italy Scotland England Australia Canada (Hamilton, Ottawa, Quebec City) TRAINING USA China Japan Portugal Switzerland Israel Germany Winnipeg Learning Objectives [JSM] Describe the Model of Dignity in the terminally ill and what this means for endof-life care Discuss research evidence supporting the Model of Dignity Describe the A, B, C, D of dignity conserving care Discuss Dignity Therapy intervention