Transitions to palliative care in acute hospitals in England: qualitative study
BMJ 2011; 342 doi: https://doi.org/10.1136/bmj.d1773 (Published 29 March 2011) Cite this as: BMJ 2011;342:d1773
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Gott and colleagues should be congratulated for their useful and
timely paper highlighting the difficulties around "transitions to
palliative care" within acute hospitals. It resonates with our clinical
practice and with our own research findings from focus groups with ward
staff engaged in caring for actively dying patients.
We wonder if terminology is more important than the paper suggests
and represents a barrier that was not discussed within it. The authors set
out to explore transitions to palliative care, but clearly the focus group
participants are referring to patients approaching the end of life, even
though definitions of palliative care stress that its provision should not
depend on prognosis. This suggests that palliative care was seen as
synonymous with end of life care within the focus groups and that this was
not challenged or considered to be a core theme. We have identified in our
clinical practice that the incorrect association of palliative care with
end of life care contributes to the either/or, active/palliative dichotomy
they describe.
We are anxious that highlighting the focus on cure within acute
hospitals might reinforce the current "community good, hospital bad"
paradigm for end of life care we perceive increasingly from those setting
the standards which palliative care teams and trusts will be measured by.
Perhaps the inclusion of greater than 17% of participants from the acute
hospitals might have elucidated some of the conflicting pressures that
acute care physicians and surgeons are juggling. Out of hours systems in
hospitals are set to a default of active management for obvious reasons of
patient safety. Cultural changes in hospitals are necessary, clearly, but
will take significant time when views are deeply held and reinforced by
systems of working. Perhaps another way to help ensure the actively dying
patient does not become a casualty of these systems, due to inappropriate
investigations and treatment, is to suggest the primary care teams
requesting admission are also asked to communicate realistic goals of care
to patients, their families and the acute hospital staff?
Finally, we are grateful that this paper should now highlight to
primary care trusts and commissioners that end of life care is complex and
involves whole system approaches, and signal the need to circumvent the
dangerously simplistic CQUINs targets we are asked repeatedly to commit to
within our own trust. We doubt we are alone.
Competing interests: No competing interests
Uncertainty in dying:keeping both hands open
This is an important and timely paper, exploring medical staff themes
around transitions to palliative care in acute hospital settings. One
theme that emerges is the genuine uncertainty attached to recognising the
point of transition. A secondary theme, which transcends it, is the
problem of black and white, "either/or" thinking about life, death,
medicine and the experience of being human.
Palliative care in itself does not preclude other "life prolonging" (if
not curative) approaches to patient management. Utilising "life
prolonging" approaches in acute settings does not preclude palliative care
involvement, with its focus on a patient-centered, holistic approach,
looking to overall quality of life, optimal symptom control, the care of
the family as well as the patient. The guiding principles of kindness,
and asking "what matters most" overall, for this individual human being,
undergoing this illness, at this time, (as opposed to what might be
technically possible) could be the guiding principles of all medical
practice. (1)
However, this sort of thinking is complex, and does not sit easily
with linear pathways or processes.
The transition towards dying is difficult for doctors to recognise. It is
a process, rather than a point. Different doctors may recognise very
different points. One GP in my area commented that the "surprise
question" probably applied to everyone over 65 in his practice. The
evidence from patients facing imminent dying is also of a non linear
process, with ambivalence, a desire to have personal control of
information flow, and even after information giving, the experience of a
liminal space, oscillating between acceptance and the hope of further life
prolonging interventions. (2) (3) (4) What is heard, and what is then
understood and known by the patient, takes time to evolve "Patient
comprehension does not occur instantaneously, and the news, no matter how
kindly delivered, causes profound ramifications and adjustments to the
person's sense of self." (5).
Approaches to medical training that develop the capacity for complex,
contextually based decision making that can hold the possibility of
palliation alongside the uncertainties of prognostication may help. (6)
The Amber Care bundle, recently developed at Guys and St Thomas's
hospitals, is a care bundle which allows full active treatment alongside
excellent attention to symptom control and establishing the patients
priorities, for acute hospital patients whose outlook is uncertain over
the next month or two. (7)
This sort of approach has potential to help both acute hospital doctors
and patients to travel together through the uncertain space, holding in
one hand the possibility of active treatment and more time, and in the
other, the importance of optimising comfort and planning for "just in
case." The message is that they are not mutually exclusive. Keeping both
hands open, in the face of uncertainty may help doctors and their patients
in the very human journey of facing death and dying skilfully, and with
kindness. It can also be very humbling. I cannot be the only palliative
care specialist doctor whose patients have sometimes, despite their
doctors honest predictions, got better.
1. Palmer E (2008) The Kindness of strangers BMJ 337 877
2. Holloway, M. (2007) ,Negotiating Death in Contemporary Health and
Social Care Policy Press, Bristol
3. Horne, G. and Seymour, J. and Payne, Sheila (2009) Advance care
planning : evidence and implications for practice. End of Life Care, 3
(1). 58-65
4. . Brown V.A. Parker P.A. Furber l. Thomas A. l. (2011) Patient
preferences for the delivery of bad news - the experience of a UK Cancer
Centre European Journal of Cancer Care 20, 56-61
5. Morse J (2011) Hearing bad news J Med Humanit DOI 10.1007/s10912-011
-9138-4
6 Fish D, De Cossart L (2007) Developing the Wise Doctor: A Resource for
Trainers and Trainees in MMC RSM Press London
7. Carey I, Hopper A, Morris M (2010) BMJ rapid response
http://www.bmj.com/content/340/bmj.c3231.extract/reply
Competing interests: No competing interests