Pediatric palliative care; 'Continuous deep sedation'

1)
Lancet has a fantastic article about pediatric palliative care. It's both a general overview of the field as well as a lively discussion of the Big Issues in pediatric palliative care (pretty much all of which will be familiar to practitioners of adult palliative care). It has case discussions involving concurrent palliative & curative therapy, palliative care for terminal illnesses which go on for years, cultural issues, suffering, hope, international issues, etc. You can tell I really liked it. Also, some sanity about 'denial,' probably one of the most over-used labels we (medical people, not necessarily palliative care people) apply to our sick patients:

Adults aware of their impending death might maintain hope by shifting from a hope for cure to hope for what they define as a good death (eg, as pain free and comfortable as possible) and with a focus on leaving a legacy. How to support hope for children with life-threatening illness is less clear. An additional challenge is the struggle for parents and other loved ones to maintain hope. What remains unexamined is the role of “healthy denial” in maintaining hope for cure despite a very poor prognosis. It is possible that for some children and parents “unrealistic hope” in the face of overwhelming disease is a functional coping mechanism that does not necessarily signify pathological denial. At times, people might hold beliefs that although seemingly discordant with each other (eg, the knowledge that one is about to die at the same time as maintaining hope for a last-minute reprieve from death) could instead represent healthy coping.

The same issue also has a review of cirrhosis with some good general info on general prognosis (although nothing much beyond this Fast Fact), prognosis after transplantation, and up-&-coming therapies (?maybe) aimed at directly slowing/reversing liver fibrosis. Interesting stuff, but nothing about supportive care.

2)
Archives of Internal Medicine has a couple.

First is an attempt of sorts to validate an anticholinergic risk scale. The ARS was developed to try to quantify how likely a certain drug is to cause anticholinergic side effects (falls, dizziness, confusion, dry mouth, constipation, dry eyes, etc.). The scale gives a drug a 0-3 (none to severe) score for likelihood of causing anticholinergic side effects and then a patient is given a risk score which is the sum of their individual drugs risk sub-scores (2+3+3 = 8 - this would be for a patient on one moderate risk and 2 severe risk anticholinergic drugs). This study attempts to validate the ARS (which was developed relatively empirically based on pharmacologic know-how) in a geriatric population (geriatric clinic patients) by looking at risk scores with actual symptoms and comparing geriatric patients with general primary care clinic patients (on the assumption that older patients are more likely to suffer anticholinergic toxicities). Essentially they found that the AR scale & score were decently predictive of toxicities, particularly in the elderly, and they conclude that the ARS is a reasonable way of identifying high-risk patients. (There is a table with the risk scale as part of the article).

The other paper is about 'delicate' issues surrounding 'continuous deep sedation' (also variably known as terminal or palliative sedation) in the Netherlands. It is based on a survey (36% response rate) of Dutch physicians, and much of the context of the study involves the fact that these physicians have euthanasia as an option for them as well as terminal sedation. I'll only comment on a couple findings. First is that these physicians overwhelmingly differentiated between TS and euthanasia, apparently largely due to intentionality - their intention with providing deep sedation was to alleviate symptoms as opposed to bringing about death in euthanasia. The other point is that the use of TS exclusively for non-physical symptoms (i.e. existential suffering) was relatively rare (~8% overall - rates are much higher than this for euthanasia). My overall gloss on this (and this is not the first bit of research out of the Netherlands to suggest this) is that - even in a setting where both practices are available - TS and euthanasia are conceived of differently by practitioners, and used differently for different situations/patients.

3)
Coincidentally, BMJ has a paper (again a survey) describing the epidemiology of the use of CDS in the Netherlands: how often, what reasons, use of artificial fluids/food, etc. Most physicians (again, this is all based on physician retrospective reporting) felt that it either didn't shorten life or did so on the order of less than a week. The one interesting bit here, and perhaps one that contradicts my earlier pontificating, is that rates of euthanasia are declining in the Netherlands whereas the percentage of people who die while receiving CDS is increasing which makes one wonder if one is being substituted for another...?

The accompanying editorial's subtitle is also worth mentioning: "Imprecise taxonomy makes interpreting trends difficult" and discusses the ongoing struggle involving language (TS vs PS vs CDS, etc.).

4)
Mayo Clinic Proceedings has two reviews. One is a discussion of informed consent - quite legalistic but a good basic review of the topic, its history, etc. The last section discusses autonomy and how patients actually want decisions made and I enjoyed this line: "Responsibility for medical care has landed on the shoulders of patients with a resounding thud."

The second is a review of small cell lung cancer. Picking up our on & off again habit of noting whether supportive care is mentioned in review articles of nasty, nearly uniformly terminal illnesses I'll point out that, in fact, there was no mention of anything like that.

5)
JCO has a really compelling reflective piece on death & blame. It starts off about patients/families blaming someone (oncologists, etc.) for the fact that treatment often doesn't work and then goes into a discussion about the place of death in our culture - is death fundamentally a wrong (in a deep moral and spiritual sense) or not? The problem is of course one can deeply believe that death is not wrong but that doesn't mean that 1) your patients agree, and 2) it doesn't deeply suck (hurts on the inside & the outside so to speak) anyway (to quote Christian quoting me - see the last post).

6)
Age & Aging has a study about a prognostic index for determining 4-year mortality for the elderly. It's based on prospectively gathered data on ~1000 patients from a single region in Italy and uses relatively easily obtainable data (could be obtained from a single office visit). Patients in the highest risk group had a 78% 4-year mortality - although it needs to be noted that only a very few patients fit into this group and so it becomes very difficult to interpret its validity. Indices like this are helpful in two ways: 1) as a research tool (risk stratifying subjects, etc.), and 2) to identify patients with more urgent indications for advance care planning, etc. What's unclear is if they offer anything further (clinically) than reinforcing the maxim that 'sick people are sick.' Thanks to Dr. Bob Arnold for alerting us to this.

7)
Finally, and don't call me crazy for noting this, JAMA has a primer about interpreting large genomic studies. It's likely that at least my generation will be faced with actually clinically useful genomic studies (about predicting efficacy/toxicities of opioids and other meds at the very least) and knowing what to make of these studies will be an important skill.

The 'Imminence Condition'; PHN; More

1)
2 from Journal of Medical Ethics:

• First is one on terminal sedation and the 'imminence condition'. It's a difficult-to-summarize paper whose main point seems to be that the 'imminence condition' (continuous sedation to unconsciousness without fluids/artificial nutrition is OK as long as the patient is imminently dying and so withholding sustenance is unlikely to hasten death by much), which is endorsed by some proponents of TS, has not been fully explored in the literature and is full of holes (ethical analytical holes, you know the type). Never one to avoid whacking my clinician's head over an ethical analysis, the major issue I had with this is that the author repeatedly states that the imminence condition is not supported/explained by ideas of autonomy, proportionality, or double effect. However he never explains how proportionality fails to support the 'imminence condition.' I mention this because when I lead discussions on this I make the argument that it does (all of this is my opinion of course):
• Imminently dying (likely prognosis less than ~~few weeks) & intractable symptoms; potentially hastening death by providing deep sedation without artificial nutrition/hydration is proportionate to the alleviation of intractable suffering and the loss of several days of life. Vs.
  
• Not-imminently dying (prognosis of months) and intractable symptoms (existential or otherwise) --> here I think one can make a good argument for lack of proportionality between shortening life by months and alleviating the suffering. (Lord knows not all would agree with this, or with my first point above; my point however is that the concept of proportionality informs this discussion.)

• Second is a study on physicians' confidence in discussing DNR orders. In case you have any any doubts about its results, it indeed did find that we are far less confident in discussing 'code status' than other medical procedures, and that housestaff are less comfortable than attendings.
  

2)
Journal of Pain recently had a supplement on all things post-herpetic neuralgia. It has articles on the diagnosis, natural history, prevention (vaccination), etc. of PHN. The supplement is industry funded. A couple things to note:

1. The treatment article lists (in its summative drug treatment table) levorphanol as one of the opioid treatments (and not hydromorphone, fentanyl, or oxymorphone). This seems to be an idiosyncratic choice by the authors (i.e. not because levorphanol has been particularly studied for PHN). When was the last time you saw levorphanol mentioned in an article like this (except in an article suggesting it should make a comeback)? Anyway it's a good review article and mentions numbers-needed-to-treat as much as possible (although frustratingly fails to define what the NNT was for: e.g. 50% pain reduction?). One for the teaching file.
2. The mechanisms of pain and itch in PHN article is very readable, and morbidly fascinating (read the itch part). It has a lot of history and in some ways traces the history of thinking about chronic pain via examining the evolving understanding of PHN.
   

3)
Journal of General Internal Medicine has a series of articles on discontinuing implantable cardioverters/defibrillators (all full-free text). One on the ethics of doing so; one on patient attitudes about it (an incredibly depressing but thankfully small qualitative study in which none of the patients had discussed ICD deactivation or knew it was an option and seemed freaked out by even discussing it); and one on clinician attitudes about discussing ICD deactivation. Quote of the year:

"That’s like an act of suicide. It’s a threat to your life. That’s like cardiac arrest. That’s insane."

4)
A provocative little letter in CMAJ (free full-text here) about decision-making in impaired adults:

"Our colleagues in pediatrics, who face an equally limited decision-making capacity among their patients, have taken a more nuanced approach based on the following principles: children have dignity, intrinsic value and a right to medical treatment that serves their best interests; children should be involved in decisions that affect them; information should be presented truthfully and with sensitivity; decision-making should be interdisciplinary and collaborative; and the best interests of individual children should be of primary concern. We at CMAJ are surprised that such principles are not considered for adults with diminished decision-making capacity."

Their argument is that decision making capacity is not an all-or-nothing thing, and we should stop treating it as such. My feeling is that in real-life the above-mentioned principles are often considered for impaired adults, even if not explicitly stated (at times my group discusses the need for assent from our impaired adult patients even if we cannot obtain 'informed consent'). It's nice however to see these ideas in print.

5)
On the EBM front....

NEJM recently published a piece looking at publication bias in antidepressant trials (it looked at all trials of antidepressants which were registered with the FDA and compared those which were published in the literature and those that weren't). They found that the unpublished trials were much more likely to be negative ones, and that even several trials which the FDA deemed negative (not supporting the efficacy of antidepressants) were published with positive sounding results. This is not to say they aren't effective but that the magnitude of benefit may be over-estimated, and also sounds a (general) cautionary alarm when interpreting systemic reviews or meta-analyses which rely only on published research (particularly in areas in which there is a lot of industry-sponsored research and thus perhaps a lot of research which is never published).

Pain management for elders; Pal-pourri

(Editor's note: Tom posted this on Saturday but it never got distributed by Feedblitz, our email updater, so I'm re-posting it on 12/3/7 in order for it be sent out for those of you who read the blog only via email.)

A Sebastiano Mercadante review is something that always catches my eye. He tends to be thorough and to look at the evidence critically. His recent article in Drugs and Aging on pain management in elderly cancer patients continues the trend. Edoardo Arcuri, a frequent collaborator, is co-author. Another Mercadante characteristic is a willingness to criticize other clinicians. The article cites, among the barriers to adequate management of pain in elders, a study finding that hospice nurses caring for the elderly "are almost twice as likely to incorrectly leave pain off a problem list than to incorrectly ascribe pain to a patient not reporting it." Even more pointed is a zinger at physician "unwillingness" to monitor opioid-related adverse effects.

The article also asks some important questions related to common assumptions about pain and elders: Do older patients feel less pain? Are they more sensitive to analgesics? In general, the answer to both questions is: the evidence is lacking, is unclear, or is contradicatory. The clinical bottom line, then, is: begin at lower doses than one would for younger adults, but be prepared to titrate to patient response. Unfortunately, they do not specify what "lower" means, but most clinicians start at 50% of the "usual" starting dose for opioids. They also say, however, that a cautious approach should not become one of "wasting time" when pain is acute. Pain can be aggressively managed and doses tritrated upward as needed as long as monitoring is frequent and appropriate to the patient's condition.

They particularly counsel caution with traditional (nonselective) NSAIDs because of the higher incidence of severe adverse effects as age increases. "NSAID renal toxicity may appear at lower doses in the elderly with subclinical renal insufficiency."

In the section on opioid elimination they point out that due to decreased muscle mass, serum creatinine is a less reliable predictor of glomerular filtration than in younger patients. Excretion may therefore be slower than predicted by serum creatine values.

Required skills for successful pharmacologic management of pain:

1. objectively assess functional age
2. understand the impact of coexisting conditions
3. carefully manage the number and type of medications taken concurrently
4. adequately communicate with patients and relatives

Other specific points:

• pain assessments and use of analgesics tends to decline as patients get older: those over 85 are at greater risk than those at 65, but there is no evidence that pain is experienced less


• there is great variability in physiologic and functional aging--the rate of decline is variable


• "the hypothesis that elders have a higher threshold for pain has not been supported"
• "no physiologic changes in pain perception in the elderly have been demonstrated"


• in general, elders require lower doses of opioids, but "only careful titration based on individual response can ensure that patients receive the level of analgesia that they require"


• elders do not have a greater incidence of side offects with opioids, but when they occur they tend to be more severe
• "the rate of drug delivery rather than the absolute dose over time was seen to influence both analgesia and side effects" (translation: increased dosing interval for immediate release opioids may be necessary)


• renal function is more important than hepatic function in the development of toxicity from morphine (glucoronidation can occur even in fairly advanced hepatic dysfunction)

It seems to be a common rule of thumb in this country (at least in the academic medical centers of my acquaintence) that hydromorphone is the preferred "first choice" opioid for elders or the first alternative should toxicities to morphine develop. This point is not even addressed in the article. Except for potency, they seem to indicate that morphine and hydromorphone are about the same. Oxycodone is recommended as a good alternative because the "pharmacokinetics of oxycodone are mostly independent of age, renal function, and serum albumin." Of course, parenteral oxycodone is available in Europe, but not in North America. Transdermal fentanyl is also said to be worthy of consideration for patients with chronic pain and reduced renal clearance, because it "might be better tolerated than morphine because of lack of accumulation of important metabolites." They caution, however, that the decreased lean body mass to fat ratio may may "facilitate fentanyl accumulation once fat and muscle stores are saturated."

This may be one of those articles to consider for Drew's famous Teaching File. It requires a close read, but provides an excellent "if you only have time to read one article" resource.

December 1 is World AIDS Day.

A research team at the Mayo Clinic presented findings this week at the meeting of the Radiological Society of North America on its study of cryoablation for pain resulting from metastatic bone tumors. 34 patients with 10 different tumor types were treated. 80% reported "clinically significant" pain reducation that persisted at 24 weeks after the procedure. Next up: a multi-institutional study that compares cryoablation head to head with radiation therapy.

A study (secondary analysis of a bisphosphnate study) published online ahead of print in Cancer this week again highlights the disparity between Caucasian and non-Caucasion patients in pain from advanced cancer. This study found that in a large international (19 countries!) cohort of women with metastatic breast cancer non-Causasian women (82% of whom were from the US) reached a pain level of 7 or higher (Brief Pain Inventory) significantly earlier than white women. They suggest that race be considered a risk factor for pain and that clinicians be prepared for aggressive and earlier intervention for pain in non-Caucasian women.

An article in the October issue of the Fordham Law Review uses the recent trial of a doctor accused of murdering/euthanizing her patients during the Katrina disaster to launch a discussion of intent and the use of "risky pain medication" at the end of life. It's pretty dense & legalistic (oh yeah, its the Fordham Law Review) but essentially defends judicious use of pain medication at the end of life (for pain) and "terminal sedation" [there are plenty of other terms that can be used; this one is particularly loaded] for intractable symptoms. Many people, of course, have raised the ethical issue that intent is difficult for a 3rd party to determine. In a criminal trial, a prosecutor has to convince a jury that the intent was to hasten death. My own opinion: since there is no evidence that appropriately titrated analgesics and sedatives hasten death--and evidence is accumulating (examples here and here) that they don't--double effect is not usually necessary as an ethical basis for defending the use of either class of drug in patients near death and experiencing severe symptoms.

Heated Criticism of Living Wills Spills Over

The Washington Post published an editorial on the drawbacks of living wills as powerful agents in advanced care planning. Well at least that is how the article started. The author of the piece, Charlotte Allen,was recently diagnosed with breast cancer, luckily caught in the early stages. The frustration of the piece stems from the omnipresent questions about living wills.

"Do you have a living will and if not would you like more information on them?"

She felt "ever-so-slightly harassed" and imposed on by the frequency and style in which these questions were asked. So much so that she took these questions to come up with a conspiracy theory. The medical establishment and secular elitists want you to die. Now if you have read this post this far, I highly recommend you go read the primary article, because I am not going to re-hash it line by line here (see the end of this post for that). I do not recommend it as a fine piece of well-founded opinion writing, but I do recommend reading this piece, because I think this article represents a sizable minority view that is important for the medical field and palliative care especially to recognize.

In my early training in hospice and palliative care, I was excited by this new approach to medicine. Spending time talking with the patients and families, openly discussing difficult life and death topics with them so they could make the decisions that were in their best interest; these actions were very rewarding. But I did go through a brief militant hospice phase, where I thought hospice was 'right' for everyone, I just had to help them understand that. So I can see where Ms. Allen may see some of this over-bearing "accept death already, would ya?" style. From talking with more patients and families, I soon learned that hospice was not right for everyone. Some people need to fight to the very end. That is a good death for them. But because some want to treat to the end, it does not mean medicine has a death-wish for patients when we address end-of-life issues.

She impedes the full impact of this rhetorical exercise with the use of unnecessary pejorative words, broad generalizations, unfounded accusations, and setting up an artificial us against them divide. Readers familiar with Pallimed will know that we have outlined some of the limits of living wills, and surrogate decision making, so in part I agree with some of the points that Ms. Allen attempts to make. I just wish she did so in a much more factual way without using fear and smear tactics.

If you are really interested, I encourage you to read some of the entertaining 9+ pages of comments and the transcripts of a Q&A (much shorter than the comments). Most of the comments seem to oppose most of her points which I was glad to see that the readers of the Washington Post seemed to be well-informed. Most of the people who did agree with her broader accusations tended to side with her on opposing the outcome and decision making process of the Schiavo case.


----------------------
Some point by point issues with the article. This is kind of long. Well really long.

Use of fear as a anti-establishment tactic.

• I found something weasely...
• I've developed a sneaking suspicion that someone else may be hoping to call the shots
• "dying when we, the intellectual elite, think it is appropriate for you to die."

Who are the intellectual elite? Classic 'us vs. them' technique that leads to conspiracy theories. She answers later in the transcript that she defines the intellectual elite as: "Great minds at our universities and media."

• with the growing acceptance of such notions as physician-assisted suicide

See Drew's last post on public misperception on what euthanasia means. Polls on public acceptance of PAS vary widely and there has been no real trend in either direction that is well-established. Voter approval in one state 10 years ago, and with multiple failed attempts since then in other states, hardly makes the case for a growing approval.

• Many people, especially highly educated, nonreligious people, think that "physician-assisted death" is exactly the right way to go -- or to send off your unconscious mother.

What this has to do with highly educated or nonreligious people is unclear. It seems to be a dividing technique again, especially when "they" are thinking about doing this to Mom!

• American Academy of Hospice and Palliative Medicine reversed its long-standing opposition to physician-assisted suicide

A careful reading of this statement demonstrates that every attempt should be made to avoid PAS/PAD. And the Academy did not reverse its opposition, it has a position of studied neutrality. Reversal would be an endorsement, which this is not. Most of this I see comes from the fact that you have a national organization has to provide guidance to professionals in Oregon (legal PAS) and in other states (illegal PAS). There is research to show that PAS happens regardless of legality, but adhering to state laws or working to change them should be the approach to take if you do not like the way things are now.

• Have your doctor pull out your feeding tube or inject you with cyanide or do whatever fulfills your idea of death with dignity.

Now come on..."inject with cyanide?" That is really confusing the picture and equating that with stopping tube feeding is way too blunt for such a complex subject.
Misperceptions of medical language/approach.

• ...whether I would want to be denied "artificial" food and water...

Nutrition by mouth is considered natural. By other routes is artificial (feeding tube, IV, etc). Artificial nutrition is not inherently endowed as good. It must be used appropriately.

• ...being given 30 seconds in a busy lobby to read and sign a complex document...

True this is how the process starts, but quality medical establishments should take the time to address these with you after you have had time to review them. One should avoid making these decisions in haste or in a crisis when possible.

• ..."right to die"...
  

An ambiguous term at best. It is really more of a wastebasket term to lump subtle and complex ethical issues. It is difficult to throw this term out in the open without really defining it for the reader as to the author's understanding.

• Equating "good death/dying well" with the word euthanasia

These words all have very open meanings that have different understandings depending on circumstance and understanding. Good, death, dying, well are all common words with some overlapping themes. To suggest this is the secret medical code for 'hastened death' is disingenuous.

• "Then, what you have to do is take him to a hospice. That's what we did with my mother. They'll put him on a morphine drip, and he'll be gone in a few days. They know what to do."

Her first hand experience with hospice care is tainted by a strangers comments that could be interpreted in many different ways. Good hospice care may involve morphine drips, but the majority of hospice care does not need this measure to provide comfort. The rule should be the right dose for the symptom. Besides no one ever notes the fact that hospices have a financial disincentive to hasten death, they are often paid per diem. And I have had many, many patients live well and long on opioid drips.

• terminal sedation
  

Misperceived as sedating and then stopping food and fluids, when in fact most studies demonstrate that when this is enacted, the patient has often already stopped eating and drinking on their own.

• It's not surprising that many people have reservations about theories of "dying well" that always seem to involve not staying alive...only 18 percent of Americans of all races had them...

She again uses the possibility of the public reacting against the establishment as the potential reason for not having living wills. The most common reason I encounter in my practice: No one likes to talk/think/discuss end-of-life issues. That is a pretty obvious one.

The opinion piece's good points.

Many people do not have living wills. So let us better understand the barriers and help them pick a decision making process that is right for them.

Impotency of living wills. The process to make them and keep them up to date and readily available is a systems issue not a failure of the idea of a living will. Often the language is ambiguous, and the form is not updated frequently. POLST may be a way to fix some of these issues, but I am sure Ms. Allen would find some objections to that.

Living wills seem to only indicate what you don't want. That is true but that is a reaction to the perceived over-treatment by the medical system and how living wills were hatched in the first place. But there is no reason why a living will cannot say that your preferences are to be as aggressive as possible and to stop asking me about death and dying.
DPOA's are good things to have. They allow flexibility, but they also have limits and fallibilities that Ms. Allen neglects to highlight. Often they are signed without the most important discussion about wishes. Even when that happens surrogates may make different decisions.

She did not use the word narcotic. Pet peeve of mine.

I just want to die in peace. I think most people would agree with that. And that is what palliative care is about. Meeting you where you are at.

Picture Credit: Christian Sinclair, UC San Diego, "Bear"

Nursing and Palliative Sedation (by our new contributer)

Drew here: this is the first post from Pallimed's new contributer: Thomas Quinn APRN, CHPN. Tom is an advance practice nurse who has worked in the cancer pain & palliative care education world for much of his career. Among many other activities he helps publish the Pain Relief Connection newsletter through the MGH Cares About Pain Relief program. Christian and I have felt for a long time that there's so much good stuff going on out there that the blog would benefit from an extra voice and we are glad to have Tom aboard. When I asked Tom what he thought he'd be interested in blogging about he more or less indicated he was interested in everything (true to Pallimed's spirit) and I am hopeful he will extend the scope of articles reviewed on the blog (which, by the looks of his first post, he will). For those of our readers who think we post too much already: my anticipation is that we'll continue to have ~3 posts a week.

Tom - feel free to introduce yourself further & better in your next post & welcome aboard!

On to Tom's first post, which by coincidence has some consonance with Christian's last post & its comments:

For my inaugural foray into the blogosphere, I have chosen the topic of palliative sedation, specifically the role of nursing in this intervention. The trigger, and the main focus of this post, is a recent article (available for nursing CE, by the way) in the Journal of Hospice and Palliative Nursing, Palliative Sedation and Nursing: The Place of Palliative Sedation within Palliative Nursing Care by Claessens, et al. Journal of Hospice & Palliative Nursing. March/April 2007;9(2):100-106.

Until fairly recently there has been little in the nursing literature on palliative sedation, compared to the medical literature, which has been discussing this topic intensively for about 15 years. As in the medical literature, much of the discussion involves controversial definitions and terminology, and ethical concerns. Naturally, it also includes the role of nurses, which is typically not addressed in the medical literature. (To be fair, attention to nursing sensibilities and roles is beginning to creep into the medical literature, but it feels more like an add-on than an integration). Interestingly, almost all of the nursing literature on this topic comes from Canada, Europe & the UK. I am aware of only 2 substantive articles (Lynch and Bruce et al) from US-based authors in the nursing literature (not counting the Position Statement of the Hospice and Palliative Nurses Association, published in their journal in 2003). The only nursing-focused paper in the medical literature is a study by Morita et al in Japan that revealed a significant emotional burden for nurses in caring for patients receiving palliative sedation.

The Claessens, et al. paper comes from Belgium. It describes the development of their palliative sedation protocol and how it is implemented in practice. They don’t get wrapped up in the debate about what to call this treatment nor do they spend a lot of time on ethical underpinnings. This is a “this is how we do it and it works very well, thank you” type of paper. Several elements distinguish this paper from most others in both the nursing and medical literature.

Despite (because of?) having two ethicists as contributing authors no mention is made of “double effect,” the most commonly invoked ethical underpinning for palliative sedation. As more research suggests that neither sedatives nor analgesics [used appropriately] seem to hasten death, and as the sedation is continually titrated to patient response, double effect may no longer seem as relevant as in earlier days.

I’ve always been a bit uncomfortable with double effect; it seems defensive. Claessens et al take a very different and unique approach: palliative sedation is a “moral duty” in the case of intractable and unbearable symptoms. It is “immoral” and denies respect for the person to withhold it when indicated.

There is a corollary to the “moral duty” approach, however: “the first and foremost element of palliative care is the prevention of palliative sedation.” In other words, optimal palliative care emphasizes timely and aggressive symptom management to prevent suffering and reduces the need for palliative sedation. The authors credit the use of their protocol for reducing the incidence of palliative sedation from 7% to 2.5% over 6 years.

The patient must request palliative sedation, there must be unanimity on the palliative care team that the target symptom(s) are intractable, and there is a 24-hour minimum waiting period between the request and the implementation. The authors do not address the situation of the patient who lacks decisional capacity. One hopes that they have a contingency, despite the explicit statement that a request from the family is insufficient.

Refractory existential, spiritual, or psychological symptoms seem to have equal footing with physical symptoms. Surely, they are all interrelated, but the authors sidestep the issue, published in various places as case reports, of patients who are not imminently dying and who have existential suffering as the primary refractory symptom.

All disciplines are fully integrated into the palliative care team. Nurses are “unconditionally heard” by other care providers on the team; the emotional burdens of decision-making are reduced through the multi-disciplinary process; there is always a nurse present when sedation is discussed with the patient by the doctor; nurses support each other during initiation of sedation, and feel comfortable seeking the emotional support of the doctors; debriefing uncovers problems and leads to further evolution of the protocol.

A remarkable endorsement of the protocol concludes: “A well-developed and implemented protocol provides emotional and ethical support, peace of mind for nurses, and prevents improvisation” (the italics are mine). Wouldn’t it be nice if we could apply that language to any number of protocols?

This paper describes the experience in a single institution, and therefore comes with built-in limitations. There is an extensive discussion of the nature of refractory symptoms. One of the descriptive terms is “inadequately manageable” symptoms, which strikes me as something less than intractable. Maybe it’s just an idiomatic distinction that works in Flemish or French but not in English. A big problem with discussions of intractable symptoms is that they tend to be specific to the location of the patient and the resources available. An inpatient palliative care unit with a well-established palliative care team in a major medical center has more resources to “prevent palliative sedation” than the many other venues where the majority of patients will receive care for advanced disease.

Overall, this paper communicates a sense of the maturing of palliative sedation: serious but no longer sensational; the subject for clear, systematic approaches to assessment, decision-making, and implementation.