Care For The Dying

By Jim McVeagh 24/09/2009

Apparently Canterbury DHB are starting a two year pilot of the Liverpool Care Pathway for the terminally ill. This scheme has been running in Britain for some time amidst a great deal of controversy. The actual pathway, developed by the Marie Curie Palliative Care Institute in Liverpool, itself is more of a framework for developing your own end-of-life care pathways, rather than a prescriptive plan and , in itself, is relatively harmless. Helping palliative care practitioners to develop proper care plans for the terminally ill is a very worthwhile endeavor. The hallmark of palliative care is that it is practiced very poorly in most places. Doctors and nurses are often not particularly knowledgeable on the process of dying (doctors, especially, like to avoid the subject). Consequently, the treatment of dying patients is often haphazard with patients being under and over sedated and given inadequate pain relief (or too much). Relatives are often not kept informed and there is little co-ordination around care between nursing and doctor shifts.

The Liverpool Care Pathway tackles these things quite well and produces a level of care far more co-ordinated and adequate.

That’s the good news.

The bad news is that it is quite compartmentalised and lends itself to over-rigid interpretation. Palliative care specialists in the UK had this to say of the Pathway:

The specialists said forecasting death was an “inexact science”. Sedating patients and withdrawing fluids could mask signs of improvement.

Patients were assessed as being close to death “without regard to the fact that the diagnosis could be wrong”.

“If you tick all the right boxes in the Liverpool Care Pathway, the inevitable outcome of the consequent treatment is death,” they said.

“As a result, a nationwide wave of discontent is building up as family and friends witness the denial of fluids and food to patients.”

Essentially they are saying that blindly following the pathway will inevitably lead to the death of the patient regardless of whether the patient was going to die or not. The main problem with this is that this is de facto euthanasia in the disguise of a dignified death. Without the pathway, each stage of the dying process would be discussed with the family (and the patient, assuming consciousness) with the entire process focussed around the patient. The LCP removes the focus to the initial decision of whether the patient is dying or not. If the answer is yes, then the entire process is dangerously automatic. It becomes the dictatorial “This is how we are going to treat you while you die”, instead of the facilitatory “How would you like us to make you comfortable?” The ethical shift is entirely unpalatable to me.

The pathway approach to patient care always steers dangerously close to  ”cookie-cutter” medicine where the patient becomes secondary to the process. In no other place is this approach more dubious that in the care of the dying patient. The LCP is a cheap fix for the poor care we give to the terminally ill, so it is no surprise that the DHBs are interested in it. But the pricier route, the re-education of doctors and nurses in the proper care of the dying is a far superior one and one that will avoid the thorny issue of involuntary euthanasia.