Dr. Harvey Max Chochinov

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1 Dr. Harvey Max Chochinov Canada Research Chair in Palliative Care Director, Manitoba Palliative Care Research Unit Distinguished Professor, Department of Psychiatry, University of Manitoba CancerCare Manitoba

3 Stability of Will to Live with Pain in an 80 Year-old Patient with Colorectal Cancer Will to Live Will to Live & ESAS Score Observation Number (two per day) Lancet. 1999;354:816-9.

4 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;354:816-9.

6 Chochinov et al. Social Science and Medicine 2002

7 Dignity Model Questions N=211 # Variable % Agree or 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 they are 71.6% Chochinov HM, Krisjanson LJ, Hack TF, Hassard T, McClement S, Harlos M. Dignity in the terminally ill: revisited. J Palliat Med. 2006;9:

8 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%

9 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 contribution 83.3% 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%

10 Dignity Model Implications Dignity Specific Interventions Clinical Approaches Dignity Model

11 Social Support Generativity Continuity of Self 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

12 Dignity Therapy Question Framework Are there specific things that you would want your family to know about you, and are there particular things you would want them to remember? What are the most important roles you have played in life (family roles, vocational roles, community-service roles, etc)? Why were they so important to you, and what do you think you accomplished in those roles? What are your most important accomplishments, and what do you feel most proud of? What are your hopes and dreams for your loved ones?

13 Dignity Therapy Question Framework What have you learned about life that you would want to pass along to others? What advice or words of guidance would you wish to pass along to your (son, daughter, husband, wife, parents, other[s])? Are there words or perhaps even instructions that you would like to offer your family to help prepare them for the future? In creating this permanent record, are there other things that you would like included Are there particular things that you feel still need to be said to your loved ones or things that you would want to take the time to say once again?

16 Dignity Therapy Study: Phase I Trial (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% Chochinov et al. J Clin Oncol. 2005;23:

17 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 patient s care 64.6% 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% McClement, Chochinov et al. J Palliat Med. 2007;10:

19 Palliative Care Support Study Randomized Controlled Trial: NIH

20 Palliative Care Support Study: Preliminary Data Variable F Sig Study arm was helpful to me As helpful as any other aspect of health care Improved quality of life Sense of looking after unfinished business Improved sense of spiritual well being Lessened sense of sadness or depression Lessened send of feeling a burden to others Made me feel more worthwhile or valuable Made me feel like I am still me Greater sense of having control Accept the way things are Feel more respected and understood by others

21 Palliative Care Support Study: Preliminary Data Variable F Sig. Feel I am able to carry out an important task Study arm was satisfactory Made life currently feel more meaningful Heightened sense of purpose Increased my sense of dignity Lessened my sense of suffering Increased my will to live Has or will help my family Change the way others see or appreciate me Change the way my health care provider sees me In general satisfied with psychosocial care

22 Palliative Care Support Study Preliminary Family Data Variable F Sig. Helpful to loved one Helped give loved one heightened sense of purpose Increased loved ones sense of dignity Helped prepare loved one for the future Believe important component of loved ones care Helped reduce loved ones suffering Helped me/family in time of grief Will continue to be source of comfort for me or my family Would recommend to other patients and families

23 Depression Ratings Portuguese RCT HADS Depression sub-scale Standard Palliative Care Dignity Therapy 2 0 Baseline Day 4 Day 15 Day 30 Julião et al. Palliative and Supportive Care

24 Anxiety Ratings Portuguese RCT HADS Anxiety sub-scale Standard Palliative Care Dignity Therapy 0 Baseline Day 4 Day 15 Day 30 Julião et al. Palliative and Supportive Care

25 Dignity Therapy Literature CANADA DENMARK JAPAN KOREA PORTUGAL UNITED KIJNGDOM USA CHOCHINOV, H. M Dignity Therapy: Final Words for Final Days, New York, Oxford University Press. CHOCHINOV, H. M. et al Dignity therapy: A feasibility study of elders in long-term care. Palliative and Supportive Care. CHOCHINOV, H. M. et al Dignity and Psychotherapeutic Considerations in End-of-Life Care, Journal of Palliative Care. CHOCHINOV, H. M. et al Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life. Journal of Clinical Oncology. CHOCHINOV, H. M. et al Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. The Lancet Oncology HACK, T. F. et al Learning from dying patients during their final days: life reflections gleaned from dignity therapy. Palliative Medicine. MCCLEMENT, S. et al Dignity Therapy: Family Member Perspectives. Journal of Palliative Medicine, 10, SCHRYER, C. et al Creating discursive order at the end of life: The role of genres in palliative care settings. Written Communication. HOUMANN, L. J. et al Testing the feasibility of the Dignity Therapy interview: adaptation for the Danish culture. BMC Palliative Care. AKECHI, T. et al Dignity therapy: Preliminary cross-cultural findings regarding implementation among Japanese advanced cancer patients. Palliative Medicine KOMORI Y et al. Introduction to Dignity Therapy. Kongo Shuppan (Japan) KOMORI et al. Introduction to Dignity Therapy. Hakjisa Publisher (Korea). JULIÃO, M. et al Efficacy of dignity therapy for depression and anxiety in terminally-ill patients: early results of a randomized controlled trial. Palliative and Supportive Care. HALL, S. et al A Phase II randomised controlled trial assessing the feasibility, acceptability and potential effectiveness of Dignity Therapy for older people in care homes: Study protocol. BMC Geriatrics. HALL, S. et al Assessing the feasibility, acceptability and potential effectiveness of Dignity Therapy for people with advanced cancer referred to a hospital-based palliative care team: Study protocol. BMC Palliative Care. HALL, S. et al Feasibility, acceptability and potential effectiveness of Dignity Therapy for older people in care homes: A phase II randomized controlled trial of a brief palliative care psychotherapy. Palliative Medicine. MONTROSS, L. et al Dignity therapy implementation in a community-based hospice setting. J Pall Med. PASSIK, S. D. Et al A feasibility study of Dignity Psychotherapy delivered via telemedicine. Palliative and Supportive Care. AVERY, J. D. et al Dignity therapy for Major Depressive Disorder: A case report. J Pall Med

26 Dignity Therapy Knowledge Translation TRIALS Sweden Denmark Scotland England Australia Canada (Hamilton, Ottawa, Quebec City) TRAINING Canada United States China Japan Portugal Switzerland Israel

Palliative Care: Daring to be different

Palliative Care: Daring to be different Annual Conference 2008 Doing it Differently Dignity i Conserving Care at the End-of-Life Harvey Max Chochinov OM MD PhD FRSC Canada Research Chair in Palliative