Sunday, July 15, 2007
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:
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.