Tuesday, December 29, 2009
NYT on Palliative Sedation
This Sunday's New York Times had a front page/below the fold article on 'palliative sedation' (which as of last night was still the #1 most emailed article according to their website). It is a long, confusing article, & I'm still trying to figure out what I think of it. Like most newspaper articles about things like this it gets some things it gets spot on, while others I found deeply troubling.
The article tells the stories of several dying patients and their families, as well as interviews with palliative care physicians and other clinicians. The overarching theme of the article seems to be that 'PS' is controversial and ethically suspect - many doctors wouldn't talk about it directly with the journalist, 'slow euthanasia' charges are brought up, etc. The article also seems to recapitulate the generalized confusion out there as to what palliative sedation/terminal sedation is - and while it starts out as seeming to be about the practice of 'continuous/deep sedation' it confusingly then gives at least one patient story which is not about CDS (it's instead about a dying patient who became somnolent in her final days who also was receiving sedating comfort meds but did not receive CDS).
What it does well, and serves as a prime example of, is the anguish and distress that alterations in consciousness in dying patients cause our patients and their families. The loss of communication and personhood that accompanies the loss of consciousness, and the reality that many patients and families frequently attribute it to comfort meds and not the dying process, is repeatedly illustrated in the article. To be clear, absolutely the meds we use to treat symptoms in the dying (opioids, benzodiazepines, etc.) contribute to alterations in consciousness and I don't mean to suggest otherwise: what the article illustrates however is the pervasive unease families have about this, and the failure of clinicians to adequately allay these concerns. Not to make families 'happy' about the devil's bargain of 'more alert/more suffering' vs. 'less alert/less suffering' that occurs frequently in the imminently dying - it sucks and there's no getting around that - but the sense from the article is that many of these family members have persistent and unaddressed emotional and informational troubles about this, and that's a problem.
Aspects which troubled me:
- There is no mention of the (yes incredibly preliminary and by no means rigorous) investigations into PS practices which do not suggest it frequently hastens death (see for instance here: I by no means think this is any sort of definitive evidence, but it's an indication that people are beginning to try to answer these questions and thus far are not coming up with much to suggest current sedating practices hasten death).
- The article associates PS with rationing care at the end of life (ie clinicians being urged to hasten things along with PS to save money etc.). It does this by essentially saying 'boy PS could be used this way' then notes that no one thinks it is - but this is a sort of journalistic guilt by association (bringing it up then shooting it down) even if there is no one anywhere who thinks this is a significant problem.
- Every time it mentions sodium thiopental it notes it is also used as part of a lethal injection cocktail. Nice. So is potassium chloride, one of the most widely prescribed and used meds out there, but who's counting.
- One of the photos is of a patient who is described as resisting a DNR order for sometime, who at some point prior to her death agrees to it. They have a photo of her signing her DNR order - in the photo her doctor is actually holding the patient's hand with the pen in it (as if to steady it, etc.) - but given the overall tone of the article the (usually slumbering) paranoid part of me wondered if that image was deliberately chosen to suggest the patient was pressured into signing it against her better judgment, etc.
- There is no presentation of any patients for whom sedation (whether CDS or not) is seen as a good, welcomed thing (by either the patient or family). For every patient discussed in the article their sedation was presented as emotionally fraught, troubling to either the patient, or the family, or even the clinicians. As I mention above, this is absolutely fair, but in my experience it's just as common for family members to greet the mention of deliberate sedation with relief and gratitude: 'thank you for not letting my love one die suffering like they have been,' etc. I scanned some of the comments online and many of them spoke positively about sedation (either 'I'm glad the doctors did it so my loved one didn't die in pain' or 'When I'm dying I hope someone is willing to make me comfortable even if it means this') - it's too bad the article didn't present this perspective.
As I mentioned before, I have very mixed feelings about the article, and would appreciate others' comments and thoughts.
18 Responses to “NYT on Palliative Sedation”
December 29, 2009
Drew,
I think you should turn this blog posting into a letter to the editor.
December 29, 2009
Drew,
Thank you for commenting on this - I too read the article with a mixed response. I shared this with my Chair, who is a very smart woman, has done research on physician-aided death and a gero-psych CNS, and she thought it was positive. It was frustrating to have difficulties expressing my issues with it, but was unable to articulate more than a vague "yes, they tried to present the complexity of the issue, but it felt somehow damning of both the practice and palliative medicine in general." I finally conceded that it may be that I am overly sensitive to criticism of EOL care, but I think in these days of "death panel" hysteria, the sensitivity is warranted.
I think what made my chair like the article is what you mentioned it does well: presenting the problems we have with informing, educating, and supporting family members through this journey. She and I have both experienced the anguish of families mixed emotions first hand, and know how important it is to address them appropriately.
What I came away with, however was there still being an “us vs. them” set-up. That somehow practitioners are trying to bend patients and families to our will because “we know what’s best for them.” This seems like so much the antithesis of both the philosophy of palliative care and contrary to the general reality, that it left me grinding my teeth and yelling at the computer screen.
So thank you for putting out there some more tangible examples of why this article felt off to me. I look forward to other’s comments.
December 29, 2009
Drew,
I feel that we,who practice Palliative Care have lately had a hard time supporting and defending what we do to alleviate''Suffering''
Perhaps,the leaders in this field can start by corresponding and educating the Media,in a proactive manner rather than a Knee Jerk sort of a response via blogs.
December 29, 2009
Anon - I'm thinking about it - have a few more days - problem is - if you can't already tell from how I write the blog - is that I'm not sure how to say what I want to in 150 words or less.
Marachne - thanks for your thoughtful response. I think indeed we have the same reaction to it, but I still struggle with identifying clearly what it is that is troubling.
Shantu - I'd like to hear more about what exactly you are proposing. The reporter clearly spoke with many leaders in the field for the article, and had what appears to be quite liberal access to hospice patients and palliative/hospice clinicians as the article was being researched.
December 29, 2009
Great post Drew. I have passed it on to many people on Twitter who have posted about the original article.
I too was a bit defensive about this article. What it portrayed well was the difficult decision making that often goes on around medications and any altered sensorium (regardless of palliative sedation). I thought you spoke well to that.
I agree it did not present the positive side as often viewed by family members who want to avoid seeing their loved one suffer.
As far as the 'dirty laundry' comment, i guess I would just call it laundry and not 'dirty' since I think discussing these things openly and being willing to defend your decisions publicly helps maintain and reinforce good ethical decision making.
Marachne, I love how when presenting these media articles and seeing how different people respond. It reminds me of a recent article I saw about Stephen Colbert. Someone polled conservative and liberal self-identified people and both sides thought he was supporting their own beliefs. They basically heard what they wanted to hear in Stephen Colbert's humor.
Also, NHPCO had an official response which felt like they also did not feel it fairly represented hospice.
December 29, 2009
A couple additional frustrations: the title and the sidebar. The title of the article is: "MONTHS to live. Hard choice for a comfortable death." Palliative sedation is not for patients with months to live, rather hours to days. So, the title suggest PS is being performed well before death is imminent. And, the side bar on the web site states, "Months to Live: Terminal Sedation. This series is examining the promises and challenges of extending, or ending, the lives of very ill patients." Who's talking about "ending the lives of very ill patients?" While there may be a story in the Times about Physicians-Assisted Suicide (I don't know), the sidebar could suggest a connection between palliative sedation and the intent to end someone's life.
December 30, 2009
Excellent analysis of the article. Given the NYT's recent expanded focus on EOL issues, I had become quite charitable and even deferential to propositions asserted there.
December 30, 2009
I agree with the comments above about this article being a mixed bag for me. (I have started groaning and reaching for antacid whenever I see an article on health-related issues pop up in the NYT). I think that is because most of them are written through a "journalism filter"--what will make a grabbing, controversial, conversation-starting story--rather than being written from a more impartial/research/evidence-based standpoint.
In my limited experience with palliative sedation, I have not found the conversation/decision to be nearly so difficult: it has been a decision made with full consultation of pt and family when all measures to alleviate symptoms have been less than successful and when the pt is usually estimated to have days to live.
I don't think most physicians outside the HPM arena realize how difficult it can be to actually palliatively sedate someone: when pts have severe sxs of pain or delirium, we routinely use doses of meds for sx control that could "technically" fall within the printed dosing parameters for palliative sedation--and the pts are still awake and trying to get out of bed. (While palliative sedation is not our primary purpose in those situations, there is some overlap between doses needed to relieve sxs and those meant primarily to palliatively sedate a patient.)
I wonder how the NYT columnist would have responded to my 17 yo pt with intractable physical and emotional pain who already had an intrathecal pump and a peripheral PCA who was moaning loudly enough that I could hear him on a phone call with his half-hysterical hospice nurse as his fully-hysterical parents wailed in the background? Even with multiple meds, it was hard work to finally get him sedated for the hours before he died. Certainly, I don't see that palliative sedation hastened his death but rather was the only thing that provided him comfort in his final hours.
I think the worst mischaracterization in the article is that we would recommend palliative sedation for pts who have "months" to live. In my experience, when the decision re: palliative sedation is made with pt and family, it is when a pt has days to perhaps a couple weeks of life expectancy--the average time frame that pts live when they naturally stop eating and drinking as the course of their disease progresses. To say that sedating a person with unrelieved sxs hastens death because the pt can't eat or drink while sedated is akin to saying that we hasten death for all our anorexic pts unless we insist they eat full meals and receive nutritional supplements to keep their caloric intake up.
December 30, 2009
After 20 years of hospice work I've come to the conclusion that the "Denial of Death" is truly a hard-wired response, and not something that education will fix. While I continually try to clarify the purpose and center of hospice with families, physicians and the public, I no longer get that gut-wrench when we are painted with the "death squad" brush. As Dorothy Parker said, "It's not one damn thing after another, it's the same damn thing over and over."
December 30, 2009
Drew- I had the same emotional response to article along with wondering if perhaps I was being a bit oversensitive to some of the articles insinuations. This especially came to light for me when talking to a surgeon who brought up the article in conversation and indicated he thought it was a great article shining a light on the good of palliative care.
Regarding the implication that PS is associated with rationing of care, we're probably going to have to give the journalist a break: The doc being interviewed is the one that brought it up.
The association between the series entitle "Months to Live" and PS is an unfortunate one indeed and is what made me cringe the most. I also cringed when I read that "terminal" sedation is less euphemistic than "palliative" sedation. Oh really?
I know when I'm reading articles in NYT outside my area of expertise (and how many areas there are), I usually come away with some sense of the nuance involved in the issue. The nuance doesn't usually influence my view on the entire topic (I don't think) but just makes me understand that the issue isn't "black and white." So hopefully most readers realize that PS is a potent option for the worst case scenarios and that it helps to have someone who has thought through the issues involved (ie a PC specialist) in this type of situation.
lyle
December 30, 2009
Drew,
Thank you for your post. This piece has troubled me since I read it online Saturday night.
I am glad for the thoughtful comments above. I would say that in my experience, as a general rule, the average journalist rarely understands what he or she covers. This is despite their implicit "education" that one would think would arise from their interviews and contact with experts and affected persons.
I think we as a group probably need to invest in media training, say at AAHPM Annual Assemblies, where we could we could hire professional media training consultants to provide a mini-series workshops. H&PM is obviously a media object and so we need to implement "message development," and media management strategies, like "bridging," "talking points," "flagging," providing message "leave behinds" and all the interview/on-camera do’s and don’ts.
My reaction to the piece was not mixed. I thought it did no favors, and did a big disservice toward H&PM, particularly given the recent media/political environment. At every muddled turn, I thought the piece was fraught with subtle, but assiduous bias, to a startling degree.
To wit, the attributions toward ketamine, propofol, lorazepam and sodium thiopental were incendiary and irresponsible.
To give a reasoned context for PS/CDS, a detailed description of the types of alarming, incessant, unpredictable and intractable behaviors that patients with agitated terminal delirium exhibit (and how ATD complicates or even prevents administration of palliative medications, and for that matter complicates or even prevents administration hydration/nutrition) should have been provided.
December 31, 2009
I agree - this would be a great letter to the editor, although it might be difficult to achieve the necessary brevity with such difficult content. I think your blog post was very thorough, thoughtful, and asked all the right questions/raised all the right concerns. Thanks for sharing.
December 31, 2009
In a related vein of media management, here are some recent multi-pronged, media activities by the NHS in Wales, coordinated with at least one patient advocacy group:
Why Rob is supporting new palliative initiative ‘Dying Well Matters’
http://bit.ly/5A9ab9
Dying Well Matters – Listening to Patients and Families to Improve Care
http://www.wales.nhs.uk/newsitem.cfm?ContentID=13872
A independent health care advocacy organization's search site iWantGreatCare currently in Wales starts at Palliative Care Teams. See also their blog, tabbed at the top experienceMatters
http://wales.iwantgreatcare.org/ NB, in the NHS generally, PCT is Primary Care Trust.
Granted, in the UK there is health care system centralisation [sic :)] that we'll never see here. Alternatively, starting small can be very effective and is certainly better than nothing, Wales, population ~3 million, is a small (~5%) part of the overall NHS in the UK, population ~60 million. If it works, it can be duplicated, improved, adapted.
Florida, with its large retiree population, who come from all over the country, might be a good place to hold some focus groups to begin a listening process, where messages can be developed and trialed, before general release. Bear in mind that political organizations willing to use EOL as a wedge issue are very far along this path already. We need to play catch up, and the sooner the better.
My experience in media management comes from a previous life, where I worked for 5 years as a Community Educator for Planned Parenthood in Orange County, CA. As faces of the organization, we got media training, not a lot, but enough to see that it makes a difference.
January 03, 2010
I am glad to read all the thoughtful comments on this piece. I think if you are going to respond to the Times it should be an Op-ed piece rather than a letter to the editor.
I could feel my teeth grinding (too) as I read the original article. The article made it sound as if "terminal sedation" was a frequently prescribed treatment for dying patients. I inferred from the article that the physician insisted on terminal sedation while the family sat by helplessly. What they were doing was symptom management, not terminal sedation. In addition, a person with end-stage dementia is not going to come out of sedation and suddenly be able to have meaningful interactions with his family, but that was left up in the air.
We have to do something about the DNR order in this country. A patient should not have to sign her own DNR order. We talk about evidence based medicine as if it is something that we practice, but we will perform CPR on patients who have no chance of meaningful survival. Not only do we have to educate the public about symptom management at the end of life, we also must educate about the futility of CPR in patients who are dying from a terminal illness. I agree that the photograph of the woman signing her DNR looked as if she was being forced. We should say to her, "We're not going to start CPR if you die because it is a violent and cruel way to go," rather than, "Sign here for your DNR."
Uh oh. Now steam is coming out of my ears. Thanks always, Drew for your thoughtful posts.
January 03, 2010
Thanks all for the comments. Clearly the article hit a nerve with many of us.
Dr Pam I think your comments about how hard it is to actually deeply sedate someone are important, and they flirt with that idea in the article. Which, in some ways, why the whole practice of deliberate deep/continuous sedation has come about - our community discussing How and When to go forward with the deliberate induction of a what is essentially a pharmacologic coma - a very different matter than milder attempts at sedation for restlessness/agitation or accepting the sedating effects of opioids/benzos used for pain/dyspnea.
I think we have to 'own' however the fact that we have not really studied what we do with any rigor - and the NYT journalist makes reference to this (Rousseau's call a few years back about more research): we can't even clearly say this is how often we use it, on these sorts of patients/clinical scenarios, and here is what happens. I know I'm comfortable clinically, professionally, ethically with my (rare) use of deep/continuous sedation but I really don't know what others are doing, none of us do.
Anon - Re: DNR order signing. I'd be curious as to others' experience with this - it may be somewhat of a NY state thing. In Wisconsin (for inpatients) a DNR order is straightforwardly a physician's order - patients don't sign (and at times are surprised to hear that). (For community/home DNR orders, and at community facilities, patients DO need to sign).
January 04, 2010
Excellent summary, Drew. I'm approaching this piece , albeit, from a somewhat different perspective than most Pallimed readers (I've been involved in hospice and palliative medicine for more than 20 years, but not on the clinical side). When reading articles in the mainstream media on late-life care, I ask myself, if the article had been written five years ago, would our responses then have been any different, and what would we be discussing today? In other words,
the real impact of a piece like this can best be measured three-five years hence. Because of articles like this one, the role of palliative medicine (and its practitioners) in late-life care will be better understood by the general public, and its practices (like palliative sedation)will be less likely to be considered controversial.
Surely, there are parts of the article (and headline) we "insiders" would have written differently, but just as surely we should be pleased that the challenges faced by HPM practitioners are being widely recognized and acknowledged.
March 27, 2011
Excellent summary, Drew. I'm approaching this piece , albeit, from a somewhat different perspective than most Pallimed readers (I've been involved in hospice and palliative medicine for more than 20 years, but not on the clinical side). When reading articles in the mainstream media on late-life care, I ask myself, if the article had been written five years ago, would our responses then have been any different, and what would we be discussing today? In other words,
the real impact of a piece like this can best be measured three-five years hence. Because of articles like this one, the role of palliative medicine (and its practitioners) in late-life care will be better understood by the general public, and its practices (like palliative sedation)will be less likely to be considered controversial.
Surely, there are parts of the article (and headline) we "insiders" would have written differently, but just as surely we should be pleased that the challenges faced by HPM practitioners are being widely recognized and acknowledged.
March 27, 2011
Thanks all for the comments. Clearly the article hit a nerve with many of us.
Dr Pam I think your comments about how hard it is to actually deeply sedate someone are important, and they flirt with that idea in the article. Which, in some ways, why the whole practice of deliberate deep/continuous sedation has come about - our community discussing How and When to go forward with the deliberate induction of a what is essentially a pharmacologic coma - a very different matter than milder attempts at sedation for restlessness/agitation or accepting the sedating effects of opioids/benzos used for pain/dyspnea.
I think we have to 'own' however the fact that we have not really studied what we do with any rigor - and the NYT journalist makes reference to this (Rousseau's call a few years back about more research): we can't even clearly say this is how often we use it, on these sorts of patients/clinical scenarios, and here is what happens. I know I'm comfortable clinically, professionally, ethically with my (rare) use of deep/continuous sedation but I really don't know what others are doing, none of us do.
Anon - Re: DNR order signing. I'd be curious as to others' experience with this - it may be somewhat of a NY state thing. In Wisconsin (for inpatients) a DNR order is straightforwardly a physician's order - patients don't sign (and at times are surprised to hear that). (For community/home DNR orders, and at community facilities, patients DO need to sign).
Post a Comment