Thursday, September 3, 2009

'Death Panel' Concerns in the UK with the Liverpool Care Pathway

A letter from a group of concerned doctors, including Dr. Peter Hargraeevs, a London-based palliative medicine physician, to the British Telegraph newspaper is raising concerns over the UK's National Health Service (NHS) implementation of a protocol called the Liverpool Care Pathway.  The letter asserts:

"If you tick all the right boxes in the Liverpool Care Pathway, the inevitable outcome of the consequent treatment is death. As a result, a nationwide wave of discontent is building up, as family and friends witness the denial of fluids and food to patients. Syringe drivers are being used to give continuous terminal sedation, without regard to the fact that the diagnosis could be wrong. It is disturbing that in the year 2007-2008, 16.5 per cent of deaths came about after terminal sedation. Experienced doctors know that sometimes, when all but essential drugs are stopped, “dying” patients get better."
The news article to go along with the letter to the editor has some other statements that are potentially inflammatory as well which I won't go into too much detail here but may discuss in the comments.

For some background, the Liverpool Care Pathway (LCP) is an order set that covers many key areas of caring for dying patients.  It was created by Royal Liverpool Hospital and Marie Curie Hospice and is now under development and guidance with the Marie Curie Palliative Care Institute.

(Picture from Drudge Report Website 9/3/9)

The group created the pathway to create a standard set of guidelines to "support ward teams to manage this episode of care in the generic area and we could impact on the care of patients whom we would never meet."  The LCP has been recognized with awards and has collaborated and received the support of many UK insittuitions: National Council for Palliative Care, the National Kidney Foundation, the Royal College of Physicians, the Royal Society of Medicine and the Care Quality Commission.

The creators of the LCP realized that this was not a panacea for quality care of the dying.  They give room for clinicians to make deviations from the LCP, and have made statements that the LCP is "only as good as the people using it" and in the LCP handout to health care professionals they note the need for an importance of culture change of medicine and death, and away from a disease oriented and more towards a person oriented model.  The section is title "Winning Hearts and Minds."

So what is in the LCP? You can look at the four different (pdf) versions based on location of care: Hospital, Community/Home, (Inpatient) Hospice, and (Nursing) Care Home.  The criteria for using the form include: Excluding possible reversible conditions and at least two of the following:

  • The patient is bedbound
  • Semi-comatose
  • Only taking sips of water
  • No longer able to take tablets
All of these characteristics are typical of a patient with a Palliative Performance Status of 10 or 20%.  A recent study in the Journal of Pain and Symptom Management by Lau et al demonstrated 97% and 91% of  patients with a PPS of 10% and 20% (respectively) die within 7 days.  So this population has a large mortality  rate already and therefor would be considered by many to be dying.
I encourage you to look at the LCP guidelines yourself and see if you see anything fishy.  Looking through it it does seem to reflect a sound medical approach of: Assess, Treat, and Reassess. Much better than a recent nurse who told me that before her hospital had a palliative care team the doctors would give two orders and minimal discussion on a dying patient: "DNR and morphine drip titrate to comfort, no upper limit."

I think we have come a long way in palliative care in placing more emphasis on understanding what the dying process looks like, how to manage symptoms aggressively while balancing the need for meaningful communication to and from the patient in the last hours and days of life.  But when some basic palliative care principles are being misconstrued as systematic hastening of death, I am afraid we will go back to the Dark Ages of Medicalized Dying.
Do the letter writers have an important point?  When is the right time and the right reasons to limit food and fluids that may be harmful or beneficial to patients?  What is terminal sedation versus the natural somnolence of the dying process?  Are parts of care for the dying becoming a self-fulfilling prophecy?  Those are important questions from the public our field should answer confidently and study more and more or else we risk losing the trust of the public.
The last point of the letter is a bit disingenuous to presume 'stopping all but essential medications' make dying patients get better.  All hospice and palliative care staff have seen bumps and minor improvements from medication prioritazation and discontinuation but it is the rare case that actually improves and thrives for an extended period time as the letter writers imply.

Article Cited:
ResearchBlogging.orgLau F, Maida V, Downing M, Lesperance M, Karlson N, & Kuziemsky C (2009). Use of the Palliative Performance Scale (PPS) for end-of-life prognostication in a palliative medicine consultation service. Journal of pain and symptom management, 37 (6), 965-72 PMID: 19232892