Blending Perspectives and Bridging Differences: Weaving Clinical Research into Whole Person Care

Transcription

1 Blending Perspectives and Bridging Differences: Weaving Clinical Research into Whole Person Care Dr. Cheryl Nekolaichuk Division of Palliative Care Medicine, University of Alberta Edmonton Palliative Care Conference October 28,

2 Disclosure Relationships with commercial interests: none 2

3 Objectives To have an increased awareness of the interface between psychosocial oncology, palliative care and social science research To illustrate how research can inform and influence clinical practice (and vice versa) To highlight some lessons learned from applying social science research in palliative and end of life care 3

4 Reflecting Back: 25 Years Ago Emerging Concepts Psychosocial oncology Psychoneuroimmunology Positive health indicators Hope as a key word (1988) 4

5 Reflecting Back: 25 Years Ago Master s research Recently married Personal loss 5

6 The Road Less Travelled 6

7 Each science must develop a set of techniques, methods, procedures and theories, which are appropriate for understanding the characteristics of the subject matter of the discipline (Howard, 1986) Palliative Care Psychosocial Oncology Social Science Research 7

8 Weaving Applied Research into Clinical Practice Hope Hope Symptom Assessment Outcome Evaluation 8

9 Weaving Applied Research into Clinical Practice Hope Hope Patient & Family Support in EOL Transitions Symptom Assessment Outcome Evaluation 9

10 Faye s Story You never give up that rainbow.. (Nekolaichuk, 1990) 10

11 uncertainty There was a spirit inside of me that nobody could flatten and nothing has. People good supports Hoping Self Living Environment (Nekolaichuk, 1990) Problems life threats Medicines uncertainty 11

12 Hoping Maintaining the hoping self uncertainty People good supports Living Environment Problems Life threats Hoping Self Medicines remission cure comfort uncertainty Coping Learning to Live with Uncertainty Nekolaichuk (1990) 12

13 A Hope Framework (n=550) Personal Spirit Authentic Caring Risk (Nekolaichuk et al, 1999) 13

14 A Hope Framework (n=550) Personal Spirit meaning credibility & comfort Authentic Caring (Nekolaichuk et al, 1999) Risk uncertainty 14

15 A Hope Assessment Framework in Palliative Care Personal Spirit What is meaningful in this person s life? Risk Authentic Caring How has this person dealt with the uncertainty of having a life-threatening illness? What is this person s tolerance for uncertainty? Who authentically cares about this person? About whom does this person care? (Nekolaichuk et al., 1999, 2006) 15

16 Dichotomies at End-of-Life Certain Meaningful Connected Hope Isolated Meaningless Uncertain (Nekolaichuk, 2010) 16

17 Dichotomies at End-of-Life Certain Meaningful Connected Holding On wanting to live Hope Letting Go wanting to die Isolated Meaningless Uncertain (Nekolaichuk, 2010) 17

18 risk depression integrity Fig 6a. Correlations among depression, integrity (sense of coherence) & hope (r.60) (n=35) Chimich & Nekolaichuk (2004) 18

19 authentic caring spirit risk depression hope integrity Fig 6b. Correlations among depression, integrity (sense of coherence) & hope (r.60) (n=35) Chimich & Nekolaichuk (2004) 19

20 Living with Hope Program A Psychosocial Intervention: Hope Activity + Video Writing a letter Hope collection Collection about self (Duggleby et al, 2007; unpublished data) 20

21 Hope-Focused Interventions: Health Care Providers Hope and the Helping Relationship Curriculum (Jevne & Nekolaichuk, 2002) 21

22 How has this influenced my practice? Hope-Enhancing Strategies Searching for hope Hope-focused questions Shared hopes Hopeful Orientation Hopeful language Hope stories What would a hopeful person do? 22

23 How have you experienced hope in your practice? 23

24 John s Story Everything was stripped away. Everything I had done.was reduced to just a little tiny thing.and it felt small. Nekolaichuk (unpublished data) 24

25 Challenge #1: Uniqueness of the Pain Experience Pain is what the patient says it is. or is it? 25

26 ESAS Features Brief Minimal patient burden Easy to use at the bedside Relevant to palliative care Comprehensive Dynamic (Bruera et al, 1991) 26

27 (Watanabe et al, 2009) 27

28 4 Pt 1: bad day Pt 2: a little bit, but not that much right now (Watanabe et al, 2009) 28

29 7-8 Pt 1: pacing the floor & saying no more Pt 2: average pain (Watanabe et al, 2009) 29

30 Fig 1. Distribution of verbal pain intensity descriptors across Pain- Numerical Rating Scale (Pain-NRS) scores (n=361) Note: Missing or None = 12 (3%) 30 (Nekolaichuk et al, 2010)

31 Challenge #2: Multiple Perspectives of Pain 31

32 Challenge #2: Multiple Perspectives of Pain Nekolaichuk (2000). Eur J of Pall Care, 7(1):

33 standard error of measurement (mm) one rater two raters three raters 0 well-bieng appetite depression shortness of breath (Nekolaichuk et al, 1999) drowsiness anxiety pain activity nausea symptom 33

34 Challenge #3: Multidimensional Nature of Pain Total Pain: All of me is wrong suffering related to, and the result of, the person's physical, psychological, social, spiritual and practical state (Saunders, 1964) 34

35 Development of the Edmonton Classification System for Cancer Pain (ECS-CP) ESS ress Inter-rater reliability (Fainsinger et al, 2005) Predictive validity (Fainsinger et al, 2005) Construct validity (Nekolaichuk et al, 2005) ECS-CP Opioid dose escalation (Lowe et al, 2008) Pain intensity as predictor (Fainsinger et al, 2009) Predictive validity in international sample (Fainsinger et al, 2010) Comparison across diverse international settings (Nekolaichuk et al, 2012) ? 35

36 N - Mechanism of Pain I - Incident Pain P - Psychological Distress A - Addictive Behavior C - Cognitive Function (Fainsinger et al, 2005, 2010) 36

37 Clinical Use conducted on admission to palliative care service subsequent assessments conducted as needed used to guide the ID team in pain management (Fainsinger, Nekolaichuk & Lawlor, 2014) Available at 37

38 Fig 4. Multivariate Cox Regression (n=860) Age < 60 p =.049 Pain Intensity 4 p.005 Psychological Distress (Pp/Px) p.018 Neuropathic Pain (Ne) p <.0001 Incident Pain (Ii) p =.001 Stable Pain Control Fainsinger et al (2010). European Journal of Cancer 38

39 Table 6. Kaplan Meier Survival Curves for Stable Pain Control by Number of Positive Risk Factors (n=860) p < Chi Square = No. of Factors Cases Hazard Ratio Median Days 95% Confidence Intervals (Nekolaichuk et al, 2010) 39

40 John s Story 47 year old man Neuropathic pain Pain with movement Married, 2 young children CAGE = 0 MMSE = 29/30 Pain intensity 8/10 (initial) 40

41 John s Story Age < 60 Ne Ii Pp Ao Co Pain intensity 47 year old man Neuropathic pain Incident pain Married, 2 young children No addictive behavior Normal cognition Pain intensity 8/10 (initial) 41

42 John s Story Age < 60 Ne Ii Pp Ao Co Pain intensity 47 year old man Neuropathic pain Incident pain Married, 2 young children No addictive behavior Normal cognition Pain intensity 8/10 (initial) Number of risk factors = 5 Median time to achieve stable pain control = 30 days 42

43 Pain psychological distress Nekolaichuk CL, Fainsinger RL, & Lawlor P. (2005). Palliative Medicine, 19, Fig 2. Relationship of psychological distress with related concepts 43

44 Pain Psychological Distress Guidelines Relationship with pain Multidimensional physical emotional psychological distress practical social spiritual Nekolaichuk CL, Fainsinger RL, & Lawlor P. (2005). Palliative Medicine, 19, Fig 2. Relationship of psychological distress with related concepts 44

45 Pain Psychological Distress Guidelines Relationship with pain Multidimensional Relationship with suffering Relationship with coping Physical symptom expression refractory suffering somatization physical psychological distress practical spiritual emotional existential pain social total pain Nekolaichuk CL, Fainsinger RL, & Lawlor P. (2005). Palliative Medicine, 19, coping Fig 2. Relationship of psychological distress with related concepts 45

46 Pain Psychological Distress Guidelines Relationship with pain Relationship with suffering Multidimensional Relationship with coping Physical symptom expression refractory suffering somatization physical psychological distress practical spiritual emotional existential pain social total pain Nekolaichuk CL, Fainsinger RL, & Lawlor P. (2005). Palliative Medicine, 19, coping Fig 2. Relationship of psychological distress with related concepts 46

47 (Nekolaichuk et al, 2012) 47

48 Role of the TPCU Interdisciplinary Team (n=98) Pain Mechanism (p=0.006) Feature Mean SD Psychological Distress (p=.000) Feature Mean SD Ne Pp Nc Po Nx Px (Nekolaichuk, Fainsinger et al., unpublished data) 48

49 How has this influenced my practice? Understanding the Pain Experience Individual pain experience and personalized pain goals (PPG) Role of multiple perspectives Pain profiles, risk factors and nonpharmacological approaches for coping with pain (ID team) 49

50 What is your understanding of the pain experience? 50

51 Anne s Story When the time passes and you re still not dead.then what do you do? 51

52 What can we do to alleviate a person s suffering? Suffering is the unspeakable, as opposed to what can be spoken; it is what remains concealed, impossible to reveal; it remains in darkness, eluding illumination; and it is dread, beyond what is tangible even if hurtful... (Frank, 2001, p. 355) 52

53 Challenge #1: What interventions do we use? Existential therapy (Frankl, 1963) Meaning-centered Psychotherapy (Breitbart et al 2004, 2012, in press) Dignity therapy (Chochinov, 2012) Supportive group therapy (Spiegel & Classen, 2000; Goodwin et al, 2001) CALM Managing Cancer and Living Meaningfully (Nissim et al, 2011) Living with Hope Program (Duggleby et al, 2007) 53

54 Challenge #2: What outcomes do we measure? Too many tools in practice Over 100 tools cited; nearly 100 were only cited < 10 times (Harding et al, 2011) 17 sets of indicators, 326 indicators (de Roo et al, 2013) Varying quality of tool development process Harding et al, 2011: The PRISMA Symposium 1: Outcome Tool Use, JPSM. De Roo et al, 2013: Quality Indicators for Palliative Care: Update of a Systematic Reviews, JPSM 54

55 Challenges in ESAS Use (Nekolaichuk et al, 2008) 55

56 Buttenschoen et al, 2014 Watanabe, Nekolaichuk, Beaumont, Mawani. Supportive Care in Cancer 2009: 17:

57 Challenge #3: What research designs do we use to show that we are making a difference? Aoun & Nekolaichuk (in press) 57

58 58

59 No significant differences on primary outcomes of distress Depression Quality of life Dignity Spirituality Symptom burden Significant differences on some secondary outcomes Self-reported EOL experiences 59

60 How can we show that we are making a difference? Selective patient recruitment Randomization does not ensure group equivalency Lack of standardization of psychosocial interventions Selection of appropriate outcome measures Influence of non-specific therapeutic factors Nekolaichuk (2011). Lancet Oncology, 12:

61 Grief & Loss Life Review & Reminiscence Legacy Work Hope-Enhancing Strategies Safe & Hopeful Environments Tappings God is tapping my shoulder 61

62 62

63 Non-Specific Therapeutic Factors Therapist Patient Helping the Whole Person Achieving a Sense of Healing Nekolaichuk et al (2013). Qualitative Health Research, 23:

64 Nekolaichuk et al (2013). Qualitative Health Research, 23:

65 Chochinov et al (2013). Health Care Provider Communication: An empirical model of therapeutic effectiveness. Cancer. 65

66 Therapeutic Relationship Showing up Being present Being comfortable with being uncomfortable Trusting in the process Recognizing my limits How has this influenced my practice? Learning to live with uncertainty 66

67 How do you know when you are making a difference? 67

68 Weaving Applied Research into Clinical Practice hope strategies hope orientation Hope Hope Pain level of evidence outcomes non-specific therapeutic factors Suffering unique experience multiple perspectives multidimensional 68

69 Hope Hope Hopeful Orientation Pain Pain Experience Suffering Non-specific factors 69

70 Hope Hope Hopeful Orientation Therapeutic Relationships Pain Pain Experience Suffering Non-specific factors 70

71 SA Hope Hope Hopeful Orientation Our Stories Therapeutic Relationships Pain Pain Experience Suffering Non-specific factors 71

72 Maintaining Hope Shared Hopes Learning to Live with Uncertainty 72

73 Future Directions How can we foster hopeful orientations for ourselves, our teams and our environments? How can we assess the effectiveness of nonpharmacological approaches on complex pain syndromes, particularly psychological distress? What are the non-specific therapeutic factors that impact patient and family care? 73

74 The Road Less Travelled: Lessons Learned 74

75 Lesson 1 In order to understand another person s experience of hope, I need to begin by understanding my own.

76 Lesson 2 Pain is more than what the person says it is 76

77 Lesson 3 If you re going to measure something, measure it well.

78 Lesson 4 There is safety in numbers 78

79 .but numbers are only part of the story. 79

80 Lesson 5 All suffering is bearable if it is part of a story. Jevne & Nekolaichuk,

81 Lesson 6 Life is a mystery... There are some things in life we weren t meant to know. (cancer patient) 81

82 Lesson 7 Life is just a leap of faith. Spread your arms and hold your breath 82

83 .and always trust your cape. Guy Clark, The Cape 83

84 Acknowledgements Dr. Eduardo Bruera Dr. Robin Fainsinger Research team members Research participants TPCU colleagues Patients and Families My husband, Bill 84