"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:
Article Cited:
Lau 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
5 comments:
I wish they had written more in the letter, but I think they do have a point. They allude to "algorithmic banking," and we are living in an age of algorithmic medicine, where consensus guidelines and algorithms often become the standard of care, with the implication that one need only follow the algorithm to give good care. This is an example of what sociologists call the degradation of work (a too-prejorative term in my opinion), wherein complex tasks are subdivided, standardized and reduced so they can be performed by less-skilled (and lower paid) workers. This is easiest to see in manufacturing, where the previously complex job of crafting an object is divided into relatively simple tasks.
The pathway itself would seem to be very useful in the right hands, that is to say when used by a team with an appreciation for the complexity and significance of caring for dying patients, when the pathway might be used to assure they are not missing anything important. But in the hands of someone who regards the pathway as the distillation of good training, such that following the pathway equals good care, there is much to be desired. In short, as with all guidelines it has its uses, but could be used badly.
I think the letter-writers made a mistake by writing "without regard to the fact that the diagnosis could be wrong." After all, that is the first thing on the pathway.
Christian- I looked only at the inpatient care pathway. While I don't think their concerns are entirely illegitimate, it's interesting that the writers of the letter have such certainty about the inevitability of death should "all the right tick boxes" be checked. (especially compared to the prognostic uncertainty represented in their final statement.) If little or no clinical judgment is used (which as Mike says above, is a risk when algorithms fall into the wrong hands), then one could see some potential for harm. However, the algorithms are pretty reasonable (although some are vague, like the terminal restlessness one), and I think the vast majority of patients would not be precluded from unexpectedly "getting better" if the algorithms are followed appropriately.
Many US hospices use "standing orders" for nurses to follow which contain similar algorithms. I can't say that I'm always excited about this, but it usually seems to work.
lyle
MB I can't agree with you more. I also think that part of this is people reading this protocol, thinking through all the unlikely exceptions and what ifs, and then assuming less astute people than them are applying the protocol outside of its domain/outside of the wise use of a skilled team of clinicians.
To me, it resonates with the VA advance care planning debacle, as well as people's overestimation of the power of living wills/ADs (both those who overestimate their power to protect patients from unwanted care as they die as well as those who think if they sign an AD then some doc or nurse will read it and 'pull the plug' on them prematurely). Both 'sides' here overemphasize the power of the paper, ignoring that in real practice these decisions/practices cannot be captured on paper simply.
All that said, protocols can always be misused/mis-applied, and if they are promulgated without the proper clinical training then they absolutely can be dangerous. But then that's the real problem: not the protocol.
Look at this follow-up article interviewing a palliative care nurse in the Times UK.
The article is actually great but if you read just the headline/tagline as many people do what would you think about this: "The palliative care nurse: some days I wish I worked in a shoe shop"
In my attempts to research a little into LCP I found your article and subsequent comments. I do not have a medical background but do have first hand experience of the process. I do feel the letter writers make a useful point and hopefully create greater awareness of the potential pitfalls.
I certainly have no problem with LCP in itself but the point "only as good as the people using it" is my major concern.
In my experience earlier this year my mother was admitted with a urine infection directly into a ward for the elderly. Her consultant (responsible for the whole ward) was never seen but a ward doctor was there full time for five days a week.
I was told that my mother would be going on LCP as she was going to die imminently by the sweet young female ward doctor painting a rosey picture. We did not query this until nearly a week later when my mother was still alive and conscious. LCP to me was right at the time but dying of dehydration, I could not condone.
The Sister in charge agreed with me (as she had already asked for fluids to be re-introduced - to no avail). The on-call doctor (as it was a weekend) also agreed and prescribed fluids. The next day the sweet little doctor turned into a raving lunatic as her instructions had not been followed. She refused to reassess my mother’s condition and proudly told me that 75% of her ward were on LCP and that she could overrule any request that I made. After this my mother’s death was most definitely ‘inevitable’.
Medical notes were hidden, I saw no evidence of any medical ‘team’ making joint decisions and there was no room to re-evaluate the original diagnosis.
After speaking to other relatives of patients in the same position they were left stunned at the deaths of parents as some had not even known that they were on LCP and had been admitted with relatively minor conditions.
Speaking to nursing staff, that did indeed do an excellent job on the whole, they intimated that they were not allowed to raise questions as the doctor’s word was final and their jobs were at stake.
If this were an isolated case it would be different but there are far too many horror stories not to raise questions about the management, or mis-management.of LCP. To this end the letter and the article at least raises valid concerns and public awareness.
I have tried to be objective and can see the benefits in principle but in reality, being a lot more than just few cases, the principles are not followed.
Emotional calls from grieving relatives of ‘death chambers’ is understandable when it is you and your family that is on the sharp end. It leaves you with a sense that you should have done more.
The comment made here: “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” is true but it is not the principles that are in question.
In this and most of what I’ve read the emphasis is on does LCP work? – not whether it is in ‘the right hands’.
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