11th EAPC Congress,
Vienna 2009
Ambivalence towards dying.
How to understand
patients‘ wishes ethically
K. Ohnsorge (1) , H.R. Gudat (2) , C. Rehmann-Sutter (1)
(1)
University of Basel, Unit for Ethics in Bioesciences, Switzerland
(2)
Hospiz im Park, Arlesheim, Switzerland
„Terminally ill patients‘ wish to die - on the
attitudes and concerns of patients with
incurable cancer about end of life and dying“
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Research project at the University of Basel/Hospiz im Park,
Claraspital Basel (2008-2011)
Qualitative interview study (semi-structured interviews) with
patients, their relatives and caregivers
Interpretive phenomenological analysis
30 prospective case studies/approx. 150 interview
Presentation is based on: 6 case studies (pilot study), 7 case
studies (main study): 36 interviews
Aim: to better understand the experience of patients who state
to have a ‘wish to die’.
Broad notion of ‘wish to die’: from ‘wish that death might
come’ (without the wish to interfere) to the ‘wish to hasten
death’.
Kathrin Ohnsorge
„Terminally ill patients‘ wish to die“
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Ambivalence as the key emergent theme: nearly
all patients show fluctuating and ambivalent
behaviour and preferences with regard to their own
dying.
Empirical studies (Johansen et al. 2005; Emanuel
et al. 2000; Chochinov 1995): similar findings
Caregivers might experience such ambivalent
attitudes as puzzling or challenging. Some tend to
see them as signs of inconsistency or of temporary
confusion.
Patients can be unaware of their ambivalence or
experience it as burdensome.
Kathrin Ohnsorge
Ambivalence is defined as:
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„simultaneous attraction to and repulsion from an
action, inhibiting individuals who experience it
from making decisions and taking action.“
(Braverman 1987).
Object
attraction
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repulsion
„continual oscillation between one thing and its
opposite“ (Webster‘s Third New International Dictionary 1961)
attraction
object I
object II
Kathrin Ohnsorge
Ambivalence in End-of-Life Care
Ambivalent preferences
of the patient
reported by patient
Ambivalence
experienced
as
conflict
A. not
experrienced
as
conflict
P conscious
about his ambivalence
of family members/caregivers
reported by families/caregivers
meets the
experience
of patient
P.
unconscious
doesn‘t meet
the
experience
of patient
Possibly a consequence
of poor information
about the experience or
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values of Kathrin
the patient
Characteristics and functions of ambivalence
In the literature, ambivalent behaviour has
been associated with:
⇐being in denial (not acknowledging one‘s
own situation) (Telford et al. 2006;
Kingsbury 2000; Anderson 1991)
⇐coping mechanisms (Johansen et al. 2005; )
Kathrin Ohnsorge
Characteristics and functions of ambivalence
Character/poles of A.
Function of A.
Wanting to be able to accept his death
υWanting to live
Ambivalence as a coping
mechanism to come to
terms with his situation
P2
(Continuously affirming that she)
wants to die
υNot wanting to die
Ambivalence as a plea or
alarm signal
P5
Wanting to get healed
υNot wanting to get healed/
unconsciously wanting to die? (Noncompliance/denial?)
Ambivalence as a protest or
as a way of asserting selfagency or as an expression
of a personality conflict?
Wanting to die = “to travel abroad“
υWanting to walk/to go home
Ambivalence as a part of
personal death preparation
Wanting to decide autonomously
about the end of ones life
υNot wanting to expose the family to
blame (searching for the „clean death“)
Ambivalence as a moral
tension between the private
self and the public identity
Kathrin Ohnsorge
of others
P3
P6
P1P
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Meanings of ambivalence
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Ambivalence can have very different
roles and meanings within a personal
narrative.
It‘s neither always a coping
mechanism nor only an expression of
denial!
Kathrin Ohnsorge
Chronic illness research
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The experience of chronic illness is „an ongoing,
continually shifting process in which people experience a
complex dialectic between themselves and their world.“
(Paterson 2001)
A patient‘s journey with its illness happens mostly
in a „non-linear fashion, sometimes cyclical, often
convoluted and potentially recurring throughout a
patient‘s lifetime as changes brought about new
challenges“ (Kralik 2002)
-->Hypothesis: In front of an imminent death, these
processes might simply become more explicit.
Ambivalence might be seen as an active effort in
coming to terms with ones life situation and a
changing identity. But ambivalence has not only
Kathrin Ohnsorge
this function!! (P2, P5, P1Pilot)
Tensions in moral vocabularies
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„Ambivalence“ is a morally thick notion: it suggests
that it would be better that a person is not ambivalent.
Problem: when ambivalent behaviour is labelled or
pathologised from the outset on.
We should avoid labelling of behaviour!
Rather see ambivalence as an expression of tensions
in moral vocabularies: a) conflicting moral claims on a
personal level or b) between conflicting personal and
presumed social claims
Kathrin Ohnsorge
Conclusions
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Task in EoL Care: to understand the
conditions for the use of different moral
vocabularies and to explore when and why
it comes to tensions in moral vocabularies
of patients.
Kathrin Ohnsorge
Conclusions
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Differently than suggested in the
literature, ambivalence in EoL care can
not a priori be explained as a „coping
mechanism“ or as „denial“.
Ambivalence can have very different
roles and meanings within a personal
narrative. Therefore its conditions have
to be explored within the context of the
patients‘ narrative.
It might be that ambivalence is an
integral part of personal death
preparation, but more research is
needed!
Kathrin Ohnsorge