ghc msw presentation x 22409

Reframing possibility and finitude through physicians' stories at the

end of life

Running TowardRunning TowardRunning TowardRunning Toward

Marilyn Oakes-Greenspan,PhD, MSWMarilyn Oakes-Greenspan,PhD, MSW

Group Health CooperativeGroup Health Cooperative

Home and Community ServicesHome and Community Services

February 24, 2009February 24, 2009

Popular conceptions

Why talk to physicians about death and dying?Why talk to physicians about death and dying?

✓They’re not good at it;✓Physicians are the ones we relay on to tell us about our health and sickness;✓Death is a sign of the failure of medical technology.

To understand the phenomena of talking about death and dying in the medical practice setting.

AimAim

Primary Interview QuestionPrimary Interview Question

“Tell me about a time when you talked with a patient about the end of life …”

About the ParticipantsAbout 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

� Interpretive Phenomenology informed the conducting of one time, open-ended interviews,

lasting thirty minutes to one hour.

I collected narratives relating to talks with patients about end of life care, and used

interpretive phenomenology to search for themes within and across narratives.

MethodologyMethodology

Interpretive Phenomenology and NarrativeInterpretive 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.

• Personhood• Finitude• Possibility• What Matters• Context

Key FindingsKey Findings

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 NarrativesThemes from the Narratives

How does one organize these themes to illustrate the lifeworld of patients and physicians in the context of our sociological understanding of the medical world?

How does one organize these themes to illustrate the lifeworld of patients and physicians in the context of our sociological understanding of the medical world?

Medical Sociological ViewsMedical 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.

Medical Sociological ViewsMedical 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.

A turning around of preconceptions, pre-understandings or, per Heidegger (1962), modes of engagement in a situation.

Processual pre-reflexive understanding is experience denoting change and circumstance, how we are and what we do.

Experience incorporates the temporal understanding of movement, embodied and immediate (Todes, 2001).

Organization of ThemesOrganization of Themes

Experience

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.


Understanding

The Cartesian view of environment and institutional influences hides what is essentially situational and personal.

What we call institutions and the environment are shaped by the moods, ambience, and social and emotional climates created by the contexts and meanings of our concerns, interpersonal relationships and habitus.

When we disregard the personal context of dying, we also ignore the web of meanings and significance that ground us in our expressions of care and compassion.


What Matters: Habitus, Environment, and the Climate of the Medical Scene

‣As Foucault, and then Arthur Frank observed in writing about bodies in illness, when we remove our bodies from experience, we are a machine of parts distinguishable only by their breakdown.

‣Personhood disappears in illness in the examination of my body as ill --

‣Recognition, realization, understanding, restore personhood -- a being for whom things matter.


Leaving the Medical Body Behind – and Bringing Back the World

“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 techneExperience as techne

Experience as Involved Concern

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).

ExperienceExperience

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.

Situated UnderstandingSituated 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.

‣A very key part of what our world is to us

‣How we communicate those understandings to others

As experiences change and affect us --‣Who we are can never be precisely locked down


What is important is --


“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.”


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.


“[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.”

What Matters:Habitus, environment and climate of the medical scene


We do things by:

‣Ordering

‣Triaging

‣Organizing

These mechanisms of doing allow us to recognize difference(s).

We are at all times always embodied beings moving in the worlds of our embodied concerns



‣by the situation‣an awareness of how situations also

shape their practice

The institutional norms and rote practices that shape the physician’s day are nuanced --



“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.”



“... it would be nicer if hospice just took people who were sick. Sick enough to die without a time limit” (emphasis by participant).



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.”

“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.”



Leaving the Medical Body Behind -- and Bringing Back the WorldLeaving 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).


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.”


“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.”


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.”


“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.”

ConclusionConclusion

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

ConclusionConclusion

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

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 FoundationThe Century Club

UCSF President’s Research Fellowship in the HumanitiesThe physicians who agreed to be interviewed for this study,

and the physicians who helped me get the interviewsThe Department of Social and Behavioral Sciences at UCSF

AcknowledgmentsAcknowledgments

Questions

ghc msw presentation x 22409

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