CLINICIAN SUFFERING AT END OF LIFE: A PARADIGM SHIFT FOR PALLIATIVE CARE PROVIDERS

Transcription

1 CLINICIAN SUFFERING AT END OF LIFE: A PARADIGM SHIFT FOR PALLIATIVE CARE PROVIDERS Joan Berzoff, MSW, EdD, BCD Maxxine Rattner, MSW, RSW SWHPN General Assembly March 7, 2016

2 Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with lifethreatening illness, through the prevention and relief of suffering, by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. - WHO, 2016

3 The relief of suffering has been described as an Ethical duty and Obligation for palliative care providers - Cassell, 1982; Sacks & Nelson, 2007; WHO, 2014

4 Suffering tends to be widespread, manifesting itself at different levels of severity, in as many as 90% of terminally ill patients. - Krikorian & Limonero, 2012

5 Suffering of some extent is universal among people who are dying, even those who have no physical discomfort. Byock, 1997

6 Suffering extends beyond the physical. Most generally, suffering can be defined as the state of severe distress associated with events that threaten the intactness of the person. - Cassell, 1982

7 Emotional Spiritual Existential Psychological Physical Image source: paintingsbycynthia.com

8 Study of relationship between pain and suffering in hospice patients 100, 75, 50, 25, 0, Pain Suffering - Baines & Norlander, 2000

9 Suffering among patients diagnosed with metastatic cancer and/or that had been admitted to a PCU with a prognosis of < 6 months 26% 25% 49% No suffering Mild suffering Moderate to extreme suffering - Wilson et al., 2007

10 Suffering among end of life cancer patients 50% 50% Physical Suffering Psychological, Social, Existential Suffering - Rujs et al., 2012

11 What happens when suffering cannot be alleviated, relieved or shifted in any way?

12 Some non-physical experiences of suffering may be intrinsic to the dying process, leaving them resistant to alleviation. Rattner & Berzoff, in press

13 Intrinsic: occurring as a natural part of something being a part of the innermost nature of a person or thing - merriam-webster.com

14 - Rattner & Berzoff, in press Intrinsic suffering at end of life Loneliness Feeling burdensome Worry for family Loss Death anxiety

15 Loneliness I am surrounded by so many people who care about me, but I feel so totally alone in my dying.

16 Feeling burdensome I don t want to be a burden to my family; I feel like they are suffering because of me.

17 Worry for family I want him to die not worrying about me and how I will cope after he s gone.

18 Loss I m not ready to die. I want to watch my kids grow up.

19 Death anxiety I m afraid of what happens right after I die of how I will travel to wherever it is I am going

20 The dilemma and paradox so central to our work: The expectation that we can prevent and relieve suffering, and our limited ability to do so due to the intrinsic nature of suffering at end of life Rattner & Berzoff, in press

21 Sources of clinician suffering - The discipline s definition/expectation that clinicians can prevent and relieve suffering - Good palliative care should relieve suffering - Suffering s persistence associated with poor quality of care and/or clinician inadequacy

22 Clinicians feel Inadequate Helpless Overwhelmed Discomfort Like a failure Sadness Anxiety Lonely Fear Weariness Pain

23 These range of feelings can lead to clinicians distancing themselves, walling off from, and avoiding patients and families for whom suffering persists. - Arbore et al., 2006; Boston et al., 2011; Thorup et al., 2012

24 Clinicians avoid using the word suffering in their work with patients because: because they cannot fix it (White et al., 2004) because the idea of taking responsibility for it overwhelms us as individuals (Lee, 2013)

25 Sources of clinician suffering - Palliative care clinicians are expected to facilitate meaning-making, joy, and growth for patients and families, in order to transform and transcend their suffering

26 we must vow to apply all of our knowledge, skill, and humanness to palliate that is to soothe, alleviate, and relieve all forms of suffering. With the best of our intentions, we must focus on replacing suffering with joy. - Witt Sherman, 2015 Editorial, Journal of Palliative Medicine

27 Sitting with suffering can be a useful conceptual and clinical framework that helps clinicians bear suffering intrinsic to dying. Rattner & Berzoff, in press

28 Sitting with Suffering: Clinical Practice Overview 1. Bring the language of suffering into our work with patients and families, and on teams Use the word Do you feel that you are suffering? In what way are you suffering?

29 Sitting with Suffering: Clinical Practice Overview 2. Validate and normalize the intrinsic suffering that cannot be relieved - for patients, families and ourselves I hear this a lot in the work I get to do every day with families; this is one of many hard parts of dying I m not sure you can take that worry away from him entirely

30 Sitting with Suffering: Clinical Practice Overview 3. Patients, families, and clinicians cannot necessarily turn suffering into joy, meaning, growth or transformation

31 As caregivers, we must be watchful of the manner in which our own need for meaning and a sense of transcendence may function as a method of managing the feelings of anxiety and horror that accompany our bearing witness to suffering that is unrelieved. - Browning, 2004

32 Sitting with Suffering: Clinical Practice Overview 4. Know ourselves, acknowledge and use our own feelings of fear, discomfort, sadness, etc. to help us sit and stay with patient/family suffering

33 Relational Practice That which we feel in ourselves is often what the client feels but cannot say. Recognizing our own experience of suffering helps us to name it and give words to it.

34 At very deep levels, real connection with a suffering person evokes in us the fear of our own undoing. It challenges us with the intimations of our own vulnerability and mortality. - Currow & Hegarty, 2006

35 That suffering continues, and that it cannot always be fixed, is rarely talked about among palliative care providers or in the literature. - Rattner & Berzoff, in press

36 Suffering Growth Joy Meaning Image source: sweetclipart.com

37 Dying is intrinsically hard - Rattner & Berzoff, in press

38 Sitting with suffering calls for a paradigm shift within the discipline of palliative care, as it asks us to rethink our role in being able to relieve some forms of psychosocial suffering at end of life, and thereby the very definition of palliative care.

39 Patients, families, and clinicians might suffer less if the intrinsic nature of some kinds of suffering at end of life were acknowledged. - Rattner & Berzoff, in press

40 Further, clinician recognition of their own helplessness, grief, loss and suffering has the capacity to transform their work with patients and families, by helping patients and families to articulate the same. - Rattner & Berzoff, in press

41 Maxxine Rattner Joan Berzoff

42 Examples of your own suffering as a clinician? Can you recall a time when you quickly moved to act in the face of suffering that may have been intrinsic to dying?