How physicians and by extension all of us understand death and dying.

1. Reframing possibility and finitude through physicians' stories at the end of life Running Toward Marilyn Oakes-Greenspan,PhD, MSW Group Health Cooperative Home and Community Services February 24, 2009

3. To understand the phenomena of talking about death and dying in the medical practice setting. Aim Primary Interview Question “ Tell me about a time when you talked with a patient about the end of life …”

4. About the Participants 14 physicians were interviewed 5 do rotations on a palliative care service Practice disciplines included oncology, pulmonary medicine, ICU, internal medicine, transplant, hospitalists Practice years ranged from 1st year fellowship to over thirty years after completing residency

6. Interpretive Phenomenology and Narrative An interpretive phenomenological study must always involve story. Story is not only how we make sense of our experience, but also how we come to understand the situation. Story reveals context and the understanding of what was possible (and what is possible) as the story unfolds.

8. Rupture: Interrupts taken for granted practices and allows one to see another way of being Connection: The need to find a starting point, and to feel integral to experience Openness and Vulnerability: Trusting one’s own instincts and strength in the presence of emotional events and expressions Presence: Being available to the person one is with, trusting both oneself and the moment Themes from the Narratives

10. Medical Sociological Views The physician-patient relationship reveals the value of knowledge and the primacy given the physician in the relationship. Structural Functionalist Paradigm (Parsons, 1951) Roles are assumed to be hierarchical and contributory to maintaining a social norm. Tacitly accepts the duality and primacy of mind over body.

11. Medical Sociological Views Political Economy (Estes, Biggs and Phillipson, 2003) Medicalization As with aging, dying can be seen to be a medicalized condition that reflects medical failure rather than an experience of living. Theorizes that aging is constructed as medicalized and deviant in a culture that values order and sameness. Political economy analyzes the power structures that disrupt and problematize roles and social expectations.

13. Through experience we are able to know our world, and to comprehend where we are at a certain place and in the particular situation. Our understanding is always situated, contextual and shaped by what is important to us as well as available. Organization of Themes Understanding

16. “ So on the one hand I had a positive experience by helping him get through the first part, and was hopeful that he would be one of the ones we could cure. But in the end, dying, you know, somehow made what happened at the beginning much less important.” Experience as techne

17. Experience as Involved Concern “… it wasn’t that I was oblivious to the fact that there was a person , I was just way too scared to be able to recognize it. And I really had that very particular thought of not being able to be…the living person who said goodbye to the dying person. And since then, I’ve often seen my role as that. As one of the representatives of the people who will continue on the planet for some time after, to be able to say goodbye and to thank the person, or to recognize their passing.” (emphasis by participant).

18. Experience Experience demonstrates connection, openness and a willingness to acknowledge vulnerability when working with dying patients. Experience ‘stops us short’ by allowing us to see a different way of doing things. Experience responds to the theme of vulnerability in the way that a physician allows herself access the ability to be present, listening and attentive to patient’s concerns. Recognizing experience means the physician has granted herself access to the patient’s world of meanings and concerns.

19. Situated Understanding Our understanding of things and of what is important, is prior to what we may eventually come to know as how we do things. Comprehension of the situation is integrated with ongoing understanding of the here and now. Through experience we are able to know our world.

21. Situated Understanding “ And I worked with that family and basically it came down to that they’re, I guess their religion wouldn’t allow that to happen and it had to sort of take its own course. And that’s a big – that creates an ethical dilemma. But for me that creates a big ethical dilemma because of the high technology that we have, we can support life for quite a long time beyond the point of which they are capable of living off all of this support. And so you start to see a very futile kind of health care delivery. But you run up that against this religious principal that says no.”

22. Situated Understanding Embodied concern reflects the temporality of illness states that changes what matters and what is possible because of our situated meanings and concerns. Our embodied lived realities cause disruption to universalisms and absolute truths.

23. Situated Understanding “ [Sharing life experiences] allows people to understand that you get it, or some of what they’re going through. You resonate with the pain, the difficulty of making those decisions and it’s not just an academic, rational, cognitive conversation. It’s an emotional affective conversation as well. And ... I teach about this with students, residents, I say, Look, if you just do the rational, cognitive, conversation, you’re doing an incomplete job—in fact, you’re doing people a disservice. And people resent it and they get angry because you’re not acknowledging that this is painful and personal and difficult .”

26. What Matters: Habitus, environment and climate of the medical scene “ But, once that [family] meeting is over, you know, I’ve got a Swan to put in, I’ve got notes to write, I’ve got work to do. And so one of the things I’ve learned as I’ve gone through in my training and as I’ve seen more and more of these patients is to compartmentalize I think is really the best term for that. And it may sound a little cold but I think it’s really necessary to be able to get your job done. You still want to feel those things but – and you do – you can’t help it if you’re a normal human being, but you have to learn – I had to learn how to allow those emotions at times and then suppress them at others.”

27. What Matters: Habitus, environment and climate of the medical scene “ ... it would be nicer if hospice just took people who were sick . Sick enough to die without a time limit” (emphasis by participant).

28. What Matters: Habitus, environment and climate of the medical scene Context and temporality “ I think, for me, it’s meaningful just to see them all the way through ... I can’t do that on all of them, but there’s a few that just really – we bond with them. I’d do that with a lot of them if I could, I just can’t. I don’t have the time, unfortunately. If I was not in the clinic all day.”

29. “ I always try to be around if somebody’s dying just because it’s the main event. You’re an attending physician, you attend. You know, if you don’t show up, you haven’t attended.” What Matters: Habitus, environment and climate of the medical scene

30. Leaving the Medical Body Behind -- and Bringing Back the World “… the closer we become connected to others in a way that facilitates mutual respect, the better able we are to cope with their eventual loss and the prospect of our own deaths,” (Coulehan, 2005, p. 341).

31. Leaving the Medical Body Behind -- and Bringing Back the World Body as person is recognized as constitutive of the world that the person inhabits. “ ... I remember when it finally dawned on me what the problem was that mom realized what [her daughter]would want, but didn’t want to go along with it because she couldn’t face it herself, she had her own issues. That was a very tough moment because I had not encountered that before, actually.”

32. Leaving the Medical Body Behind -- and Bringing Back the World “ So I think, you know, when somebody has not had a chance to live out their life fully, or somebody who does not have, somebody who has a bunch of dependents, somebody who has a disease that’s got no name and you think you ought to be able to figure out what it is -- “… All those things ratchet up the aggressiveness, uh, and ratchet up the difficulty for everybody and the uncertainty, you know. All those things, they have to be able to face the family day in, day out and say, We know it’s not this, We know it’s not that. Still don’t know what it is. “ Obviously, I’m not going to say it that way, but I mean, that’s the content of what I have to tell them. And that’s, uh, that’s very hard.”

33. Leaving the Medical Body Behind -- and Bringing Back the World Context and lifeworld “ ... it actually takes a certain amount of concentration that is more than just talking to the patient even about their symptom. I can hear about their pain symptom much more casually than I can hear about what’s important to them and what their goals are ... I feel I really have to [pay attention], particularly in situations like this where I’m going to want to ask some difficult questions and require of them some soul-searching.”

34. Leaving the Medical Body Behind -- and Bringing Back the World “ Being responsive, being with them (patients), you gain a lot. And those gains, and the change in perspective can help you face your own losses ultimately – it helps you with other patients first, because you learn to get better at this, and then I think it eventually helps you face your own losses, personal losses.”

35. Conclusion Personhood trumps the medicalized body Expressions of care are communicated by the importance of Presence Being open and vulnerable to the situation Communicating an active state of caring

36. Conclusion Context and situated meanings inform our expressions of care and what matters to us Finitude is the expression of what we feel as the closing down of our life, who we are, what we value, and what we care about

37. Patricia Benner, PhD, RN, FAAN Dissertation Committee Chair and Academic Advisor Judith Wrubel, PhD, Sharon Kaufman, PhD and Carroll Estes, PhD, Dissertation Committee The Anselm Strauss Foundation The Century Club UCSF President’s Research Fellowship in the Humanities The physicians who agreed to be interviewed for this study, and the physicians who helped me get the interviews The Department of Social and Behavioral Sciences at UCSF Acknowledgments

38. Questions