DIGNITY IN CARE. *The presenters have no conflicts of interest to report. June 15, 2018

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1 DIGNITY IN CARE June 15, 2018 Presented by: Dr. Lori Montross-Thomas PhD Assistant Professor and Licensed Psychologist, University of California, San Diego Jill Taylor-Brown, MSW, RSW Psychosocial Specialist Consultant, Canadian Virtual Hospice and MAID Clinical Team, Manitoba *The presenters have no conflicts of interest to report.

2 Dignity in Care: Outline Icebreaker Defining Dignity Dignity Therapy Dignity Through Music Patient Dignity Question Final Reflection

3 Only 1 artist or album?

4 Defining Dignity dig ni ty* noun. the quality or state of being worthy, honored, or esteemed *Merriam-Webster Dictionary As of 2018, in the top 10% of most popular words

5 Defining Dignity

6 Is Dignity Important in HealthCare? Macklin, R. (2007), British Medical Journal

7 Commonwealth Fund 2001 Health Care Quality Survey 6,772 adults in the U.S. who had a medical encounter in the last 2 years Did the doctor treat you with a great deal of respect and dignity? Beach et al. (2005), Annals of Family Medicine

8 Beach et al. (2005), Annals of Family Medicine

9 How do we provide dignity in healthcare?

10 Theoretical Model of Dignity in Care Chochinov, Hack, McClement, Kristjanson, & Harlos (2002). Dignity in the terminally ill: A developing empirical model. Social Science & Medicine,

11 The ABCDs of Dignity in Care A = Attitude B = Behavior C = Compassion D = Dialogue - Acknowledging Personhood Chochinov, H.M. (2007). Dignity and the essence of medicine: The A,B,C, and D of dignity conserving care. BMJ,

12 Dignity Being Seen Tom Hussey Mirror Series

13 Dignity Therapy Intervention for those facing end of life; usually hospice/palliative care patients Brief, individualized, for adults Typically performed in 4 Sessions over 2-4 weeks

14 Dignity Therapy Core Components 1) Consult/Framing Interview 2) Dignity Therapy Interview 3) Editing Session 4) Final Presentation of Document

15 Dignity Therapy Interview

16 Dignity Therapy Question Protocol -Can you tell me about your life history; particularly those parts you either remember most or think are the most important? -When did you feel the most alive? -What are the most important roles you have played in life? -What are your most important accomplishments; what do you feel most proud of?

17 Protocol (continued) -What are your hopes and dreams for your loved ones? -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, wife, parents, others)?

18 Why Dignity Therapy?

19 Sample Excerpts from Legacy Documents

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21 My Struggle To Be Human 21

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23 Dignity Therapy Research Highlights

24 Kissane, D, Treece, C, Breitbart, W, McKeen, NA, & Chochinov, HM. (2009). Dignity, meaning, and demoralization: Emerging paradigms in end-of-life care. In Handbook of Psychiatry in Palliative Medicine, Second Edition. Chochinov, HM and Breitbart, W (Eds). Chochinov, HM (2002). Dignity-conserving care A new model for palliative care: Helping the patient feel valued. JAMA, 287(17): Chochinov, HM, Hack, T, Hassard, T, Krisjanson, LJ, McClement, S, & Harlos, M. (2005). Dignity Therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology 23(24): Chochinov, HM. (2004). Dignity and the eye of the beholder. Journal of Clinical Oncology, 22(7): Chochinov, HM. (2006). Dying, dignity, and new horizons in palliative end-of-life care. CA: A Cancer Journal for Clinicians, 56: Chochinov, HM, Hack, T, Hassard, T, Kristjanson, LJ, McClement, S, & Harlos, M. (2002). Dignity in the terminally ill: A cross-sectional, cohort study. The Lancet, 360(9350): McClement, S., Chochinov, HM, Hack, T, Hassard, T., Kristjanson, LJ, & Harlos, M. (2007). Dignity Therapy: Family member perspectives. Journal of Palliative Medicine, 10(5): Fromer, MJ (2005). Dignity Therapy innovators aiming to make dying a more positive, fulfilling experience. Oncology Times, 27 (20):

25 100 patients treated with Dignity Therapy Pre-post measures demonstrated: Decreased depressive symptoms Decreased sense of suffering Increased sense of dignity Chochinov, Hack, Hassard, et al., (2005). Dignity Therapy: a novel psychotherapeutic intervention for patients nearing death. Journal of Clinical Oncology, 23:

26 Recent RCT Results 165 Dignity Therapy patients 136 CCC; 140 TAU University of Manitoba Canada, Curtin University, Perth Australia Memorial Sloan-Kettering Cancer Center, NY Chochinov, et al. (2011). Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomized controlled trial; Lancet Oncology

27 Scale: 1 = strongly disagree 5 = strongly agree Dignity Therapy TAU CCC X 2 (2 df) p value Treatment was helpful to me <.0001 Improved my quality of life Improved my spiritual well-being Lessened my sense of sadness and depression Increased my sense of dignity Has changed the way my family sees or appreciates me <.0001

28 The value is immeasurable. Many personal values are returned to patients with Dignity Therapy like: self-respect, integrity, family affection, security, and recognition - Hospice Staff Member Journal of Palliative Medicine, 2013

29 Dignity Therapy in Practice

30 Break

31 Dignity in Practice Role Play: 2 questions Ask and Answer 25 minutes Debrief

32 But I may not provide full Dignity Therapy...

33 Questions you can ask When did you feel most alive? What do I need to know about you as a person to give you the best care possible? (Patient Dignity Question)

34 PDQ with 66 inpatients,60 family members, and 137 healthcare providers A conversation of minutes Asked if patient would like a copy in the chart Chochinov, H.M. et al. (2015). Eliciting Personhood within Clinical Practice: Effects on Patients, Families and Health Care Providers, JPSM

35 Betty 72 y.o. married woman with breast cancer Betty jokes that there are 3 things important in her life, in this order: hair, family, nails. This is Betty s way of saying she is very particular (always has been) about her personal appearance. She is a very proper person who does not want to be seen in public without perfect hair, make-up, and being well-dressed. Lipstick and a little rouge continue to be a must for her She would appreciate being able to maintain this routine while in the hospital, and when she needs help, her preference would be to have a woman help her.

36 Juanita 67 y.o. married woman with lung cancer A very important part of Juanita s life is her Catholic faith. Her faith helps her face her illness with honesty and peace. She believes that all the work God wanted her to do here on earth will be finished and that she will go in comfort knowing she has done everything she wanted to do.

37 And the Results Showed 96% of patients gave permission to put their PDQ in the medical chart 75% of patients wanted a copy of their PDQ 90% of clinicians learned something new from the PDQ 63% of clinicians said it enhanced their sense of connectedness to the patient

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39 Dignity Through Music Music is used in hospice or palliative care * commonly provided by music therapists Autobiographical music is personally reminiscent and directly ties to positive or significant events in patients lives

40 Can you tell me about where you grew up? Can you tell me about some of your favorite bands or singers? Basic Music History Interview 40

41 When music is personal Alive Inside Documentary

42 Making autobiographical music: Creatively engaging college students in palliative care

43 In their own words When the music started, he was just there. - Caregiver The music is lovely-- it is worth millions! - Patient All of this music has laughter...it's all positive. - Patient

44 Self-Reflections on Dignity

45 What would we need to know about you as a person to provide the best care possible?

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47 Lori Montross-Thomas Jill Taylor-Brown Thank you to Dr. Harvey Chochinov, our gifted staff, and the patients who agreed to share their sacred stories.