Skip to main content

Palliative or terminal sedation

There is much to say - both good and not-so - about last Sunday's (December 27) NY Times front page article on palliative sedation ("Hard Choice for a Comfortable Death: Drug-Induced Sleep"). The issue is provocatively presented with an inconsistent, but clear insinuation that something may be amiss. I wonder what you all think; however, I am most concerned about the photos (Photos: Ozier Muhammad/The New York Times) which may easily be taken in, without the benefit of reading the explicating text. Front page: "Frank Foster, sleeping under sedation to relieve pain and other effects of liver cancer..." He's all alone, no one at his bedside. One may wonder, is he being drugged to death and left to die? The article continues further on in section one, on 2 full pages. Three large photos on the first of those pages are of Gloria Scott, an African American "terminal cancer patient" being attended by a white doctor. In one of the photos Ms Scott is being handed a pen by that physician to sign a "do not resuscitate" order. The caption below that one, in the NYT online photo gallery, reads "At first Ms. Scott fiercely resisted signing a 'do not resuscitate' order, but in late November, she changed her mind and signed one with Dr. Shaiova." The 3rd of these pictures is of Ms Scott asleep or in coma; the caption reads: "Early this month she was near death; her doctors said later they believed the drugs had not hastened her end." Do we believe that? These photos beg some uncomfortable questions: Has this woman made an informed set of choices, and without undue influence? The reader/observer is left wondering: Has she pushed, however subtly, into the 'no code,' the 'terminal sedation'?

We should problematize "palliative sedation" (as Alex Smith, Patrice Villars, and I attempted to do in a recent Lancet article). In fairness to the author of this NY Times article, she does point out that physicians and other hospice workers, as well as ethics committees, are working to develop clear guidelines and policies regarding this practice. But, in the article, there is also hand-wringing over it, and incomplete arguments both for and against the various forms (not fleshed out) of 'palliative sedation' ... and then those photos. It leaves the reader unsure what to think - befuddled, perhaps ... or suspicious. Re people who use the acceptability of palliative sedation as an argument for the acceptance of euthanasia, Joseph Fins is quoted as saying: People who adopt this argument say, "We know what you're really doing, it's crypto-euthanasia. Polemics really have no place at the bedside." Disputatious argumentation at the bedside, no. But clear and cogent arguments regarding how we are treating people who are suffering at the end of life, yes.


Ori Tzvieli said…
The question regarding terminal sedation is complicated, I agree, and highly individual. Missing from the article is the fact that in these situations the doctor often has 2 patients, the one in hospice and the family member(s). Treatment is often aimed at the family, simply because they are the ones often doing the talking, asking and negotiating. The "Ivan Ilyich" moment may be denied because of competing concerns, or often, compassion. The opposite can also be true, where family/doc may force a suffering person into an undesired "conscious death." Asking "would do you think she would have wanted" often helps, but not always.

The question regarding whether Gloria Scott was "pushed" into 'no code' is really not the question to ask, from my perspective. Given the known data about the futility of coding a patient with terminal cancer(Bedell, Rozenbaum, many others), and the added harm it often causes (broken ribs, pain, tubes in every orifice and places that aren't meant to be orifices at all, just to name a few), shouldn't the question be why is "full code" often our default position in these patients? This is one of the most crazy making aspects of American medicine from my perspective, and a place where we 'lie by omission', 'lie by TV show', or 'lie by euphemism' to our patients the most. I think a more realistic (than what we usually do) way to present the code options to a patient with terminal cancer is: "would you like us, in what would naturally be your final moments, to press on your chest and break your ribs, shove a tube down your throat and poke you with needles in lots of places in a chaotic attempt that has a very small chance of giving you more time to be technically alive but unlikely to ever return to meaningful communication with others?"

A code blue event in a patient with terminal cancer is much, much more likely to lead to the above description than to an Ivan Ilyich moment. Indeed one might argue that to code blue moment actually interrupts Ivan Ilyich moments, or other important aspects of the dying process.
Alex Smith said…
Thanks Guy for the post! I'd like to say a bit about "framing bias." The pictures, particularly of the patient alone (see picture in post), are leading. In this picture, implying that palliative sedation is isolating or is for isolated individuals.

Similarly, one's description of a code blue can bias patients and family members, as in Ori's comment. We've touched on this in previous posts, but perhaps we should make it a post of it's own. Simply put - how do you frame discussions of code status to patients? What language do you use? How do you change what you say based on the clinical situation. And where does persuasion - which is ethically permissible - cross over into coercion?
Momcat said…
qwAs a hospice nurse, I must emphasise that we are well aware of the difference between palliation and euthanasia. The primary goals of hospice are to take in a patient with a terminal prognosis of six months or less, either with or without aggressive treatment. The choice of the patient is to either suffer with invasive, painful, and futile treatments in a last ditch effort to buy more time, or to be treated palliatively via the end-of-life care philosophy of hospice to a similar life expectancy that focuses not on curative treatment, but on palliation, dignity, psychosocial and spiritual counselling, and whenever possible, various forms of wish fulfillment. The majority of patients are treated in their homes by visiting physicians, nurses, and nurses aides serving as caregivers. These are supplemented by volunteer services that range from housekeeping, shopping and errands, pet walking, reading to or writing for the patient, prayer circles, meal preparation, and even "wishes" such as a last trip to a bowling alley, a favorite restaurant, or even a fishing trip (with a nurse on board) if the patient is able.

As far as "termiinal sedation" this is a propagandist statement from the right, which as a registered republican I am very ashamed to hear of. I can not state strongly enough that we DO NOT sedate our patients to death. This would be the legal equivalent of euthanasia, and constitutes murder. Understand that it takes a tremendous amount of education and skill to be a nurse, and continued education and skill to specialize in the field of palliative/end-of-life care. We earn our license only once, and it can be revoked either temporarily or permanantly for any infarction, including the murder of patients. Congress has done our image no favors by referring to us as "death camps," and adding to this the handful of "angels of death" nurses who have been apprehended over the past several decades, the specialty of hospice has become all too misunderstood. We are healthcare providers who specialize in the provision of comfort, dignity, a healthy environment, mental and spiritual preparation for patient and family, which we attempt to end in a peaceful passage for the patient, and an experience that will not give their loved ones nightmares when it is over. We also provide 1 or more years of grief management services through counselling provided by our social workers, chaplains, and grief counsellors, along with grief camps for children of deceased patients, and support groups for adult mourners. Compare this to having major heart surgery and never, ever seeing your heart surgeon after the fact.

Popular posts from this blog

Practical Advice for the End of Life: A Podcast with BJ Miller

This week we talk with BJ Miller, hospice and palliative care physician, public speaker, and now author with Shoshana Berger of the book "A Beginner's Guide to the End."

As we note on the podcast, BJ is about as close as we get to a celebrity in Hospice and Palliative Care.  His TED Talk "What Really Matters at the End of Life" has been viewed more than 9 million times.  As we discuss on the Podcast, this has changed BJ's life, and he spends most of his working time engaged in public speaking, being the public "face" of the hospice and palliative care movement.

The book he and Berger wrote is filled to the brim with practical advice.  I mean, nuts and bolts practical advice.  Things like:
How to clean out not only your emotional house but your physical house (turns out there are services for that!)Posting about your illness on social media (should you post to Facebook)What is the difference between a funeral home and mortuaryCan I afford to die?  …

Caring, and the Family Caregivers We Don’t See

Over lunch at a restaurant in Manhattan, my father and I talked about long-term care insurance and the emergence of senior centers and nursing homes across the U.S. that offer a variety of ethnic cuisines and cultural events, catering not only to a growing population of adults over 65, but also, to an increasingly diverse population of adults who call the U.S. their home. This conversation was different from many similar ones before it – we weren’t talking about my research; we were talking about our own lives.
My parents immigrated to the U.S. in the late ‘70s and early ‘80s, following their parents’ advice on professional opportunities that seemed unimaginable in India at the time. Although they considered moving back soon after to care for their aging parents and to raise children, they ultimately decided to stay in the U.S. As I chronicled earlier, my paternal grandparents lived with us until I completed middle school, at which point they returned to India and lived with my mater…

Top 25 Studies in Hospice and Palliative Care (#HPMtop25)

by: Kara Bishoff (@kara_bischoff )

Back in 2015 we wrote a post asking for input on what articles should belong on a list of the top 25 articles in hospice and palliative care.   We decided to focus on hospice palliative care studies and trials - as opposed to review articles, consensus statements and opinion pieces.

Here’s what we came up with. It was hard to pick just 25! We highly prioritized clinical utility and tried to achieve diversity & balance. Many others are worthy of inclusion. Take a look and let us know if you have suggested changes for next year.

Module 1: Symptom Management
Randomized, Double-Blind, Placebo-Controlled Trial of Oral Docusate in the Management of Constipation in Hospice Patients. Tarumi Y et al. JPSM, 2013.Once-Daily Opioids for Chronic Dyspnea: A Dose Increment and Pharmacovigilance Study. Currow DC et al. JPSM, 2011.Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomise…