I welcome the publication of this document. As a practising Renal Physician I
recognise that my specialty is one which regrettably carries a high mortality, and
therefore guidance on the management of end of life is welcomed. I strongly agree
with the authors in the second paragraph in the Introduction (page 23, lines 10-21)
that the Liverpool Care Pathway was a valuable contribution to patient care, but any
failings were more due to implementation of the care pathway than of the care
pathway itself.
With this in mind, I furthermore strongly welcome the emphasis throughout the
guidance on the importance of communication between the caring team and the
patient and those close to them, plus the regular review of the appropriateness of the
care plan.
Despite broadly welcoming the document I do have a few specific comments relating
to its use by our specialty. These are listed below
1) Guidance regarding withdrawal of life-sustaining treatment
Firstly, a great deal of the document is concerned with managing new end of life
symptoms with pharmacological and non-pharmacological interventions. In
paragraph 54 of the summary (page 17, lines 24-17) mention is made of
changing/stopping medications. It is my view that the guidelines would be improved
by addition of a section providing guidance regarding the continuation or
discontinuation of existing physical life-sustaining treatments.
In our specialty a very significant consideration is whether dialysis should be
continued or not. I expect other specialties might have similar challenges (eg motor
neurone disease treatment and assisted ventilation). I believe that many renal
physicians will have experienced continuing dialysis for patients whose prognosis is
terminal even up to the last few days, where our judgment would have been that
continuation would not have been extending life, and might have had very
questionable impact on quality of life. Guidance around this might be very helpful for
us in future practice.
2) Guidance around prescribing in organ failure
I note a large amount of the guidance relates to using pharmacological treatments to
alleviate end of life symptoms, and balancing their use against side effects.
Obviously, drug pharmacodynamics are significantly altered in organ failure including
renal failure. I believe it might be helpful to acknowledge this as a caveat regarding
all prescribing. I know that in my own area we developed a local prescribing
pathway for end of life care specifically for renal patients and I suspect many other
areas will have done likewise. I would welcome a section in the guidance
acknowledging the issue and promoting or supporting such initiatives.
3) Improved clarity around timing of end of life care planning and advance care
planning
In my view the second section of the guidance regarding assessing for signs and
symptoms suggesting a person is entering the last days of life are a little confusing.
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In my view some of the symptoms cited are associated with death within hours (eg
mottled skin) and others associated with death within weeks (eg fatigue). I would
welcome some clarification regarding those associated with imminent death and
those associated with death soon. I would also welcome advice that those which
could still indicate a prognosis of days to weeks would represent an opportunity to
discuss and create an Advance Care Plan, prior to development of symptoms which
would suggest an even shorter prognosis.
Dr Andrew Mooney, Renal Physician, Leeds Teaching Hospitals, 25 August 2015 for
the Renal Association
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