Thursday, August 20, 2009
Palliative Care featured (again) in the New York Times
I recall someone saying that the New York Times has started to produce enough articles on end of life care to become a palliative care textbook. It is wonderful to see such high profile coverage of our field which is generally very complimentary. Just type in Pallimed and "New York Times" into Google and you will get a sense of how many times we have covered at least the big articles here.
Today's feature article (6 web pages as opposed to the usual 2) follows the palliative care team at Montefiore Medical Center and centers around a couple of patient stories. The story, "Breaking Bad News," is part of a year long series called "Months to Live" which seeks to "explore the promises and challenges of extending, or ending, the lives of very ill patients." The articles are on a monthly basis and the two previous stories are "Gently into the Night" and "Quest for a Miracle". (Did I use enough quotation marks? Or did I need more parentheses? Here is a semi-colon; just for kicks)
Obviously having a feature story on talking about end of life care is timely given the heated discussions about HR 3200. But in reading the article there were a few things I found concerning and maybe I am being overly critical. It was just after reading it, I wasn't running around to show the article around as a good representation of palliative medicine work.
So let's start out with the PROS (with a few editorial comments):"Part psychoanalyst, part detective, Dr. O’Mahony had to listen to the cues and decide what to do next."
Excellent description of the searching and complex conversational skills good palliative care staff have."But Dr. O’Mahony does not press hard for a written advance directive,"
Important to recognize that palliative care staff go where the patient is at psychologically, philosophically.
"But before leaving, he made sure that she had aWhile at the same time recognizing important opportunities exist to get crucial questions answered or tasks completed.health care proxy — her husband — who would make decisions for her if she became incapacitated. He knew it would be harder to get one later."
"For about an hour, Dr. O’Mahony asked open-ended questions, looking for clues as to how much she knew and how much she wanted to know."Good palliative care takes time and active listening!
"A student named Paul (most asked to have their last names withheld for fear of harming their careers) told Ms. Telcher that her mammogram had revealed a “finding.”"Choosing the right words is a skill learned with time, experience, and good mentoring.
"Two doctors on Dr. O’Mahony’s team listened quietly, and she seemed relieved just to be able to talk things through."Listening is therapeutic. Write it down on your medical plan.
“Many clinicians don’t want to send the message that they’re giving up on their patients,” said Dr. David Goodman, a co-author of the Dartmouth Atlas. “They see palliative care as diminishing hope.”A statement I can generally agree with BUT in publishing it does it also reinforce the false belief that palliative care is about 'giving up.'
"While there is nothing in the House bill to suggest that such panels would exist, the end-of-life language became so radioactive that several members of the Senate Finance Committee said they would not include it in their version of the bill."Yes, please correct the misinformation! And realize misleading statements do have consequences.
"But some of these [palliative care cost savings] studies have been conducted by advocates,"Good to fairly acknowledge a potential bias.
"“It’s just sort of letting them die completely naturally. It’s hard to explain to a lay person, because we know we need food and liquid to live. But we don’t need them to die. We’re just feeding whatever is killing them.”"I feel sort of mixed about this one. This issue needs wider discussion, but in my experience the difficulty lies not in the explanation but in accepting emotionally what lack of feeding means.
"Asked how she deals with the death of her patients, Dr. Shaiova said, “I play the harmonium.”"Yay self-care! Needs more press for people in tough occupations.
"She would return from the [radiation] treatments — administered every day for 29 days, her husband said — in a stupor."I am not sure why radiation treatment side effects always seem to get downplayed, but they do. So it is nice to see some of the total impact addressed including the stamina/cognitive effects of radiation.
"“During these times when her thinking is impaired, you are her voice,” Dr. O’Mahony replied."I really like this statement. I use variations on the theme many times when helping surrogates figure out how to make tough decisions.
"He had several conversations with her before she died, a luxury that other types of doctors might not have."This is one thing that makes palliative medicine unique. "Luxury" is a very interesting choice to describe this. Does time=money?
"“Patients sometimes will be very explicit about wanting that information very, very clearly delivered,” he said. “Whereas other people don’t.”"The simple act of listening to the needs of a patient goes a long way into personalizing treatment.
And here were some of the cons: (Disclaimer: I don't know the docs mentioned in this article and I realize some of their words are taken out of context. This is not a knock on their practice at all but maybe how the reporter portrayed them. I have had words misconstrued in reporting before which I think for our field will continue to be a frequent hazard given the nuances of our conversations.)
"[Palliative care] has also become a focus of attacks on plans to overhaul the nation’s medical system..."Palliative care is under attack? Well not really. Maybe indirectly, but I have not yet heard hospice or palliative care besmirched. We need to be careful with words like this because this sentence effectively places a target on our field, which I feel has escaped harm thus far.
"They know who is more likely to suffer silently, and when is the best time to suggest a do-not-resuscitate order."I have trouble with the wording of 'suggesting' a DNR order. I just don't think it fairly reflects how many palliative care teams approach DNRs. I would have preferred 'discuss' since it implies no agenda which reflects patient-centered care.
"A third of Medicare spending goes to patients with chronic illness in their last two years of life; the elderly, who receive much of this care, are a huge political constituency."Are versions of this statement exhausting you? While a true statement, it starts to become a straw man fallacy regarding cutting costs. Good comfort care is not necessarily cheap and figuring out prospectively when the last two years of life are for chronic illness is extremely difficult given our lack of a Medical Prognostication Manhattan Project.
"Rather, Dr. O’Mahony and his colleagues were more subtle, cunning and caring than their own words sometimes suggested."Oh please don't call palliative care doctors cunning. Skillful? Sure, sounds good. Wiley and deceptive? I'll pass.
"They are tour guidesAh mixed metaphors. Tour guides on the road to death (i.e before death) is much different than Charon (the name of the ferryman BTW) who guides the already dead. And besides palliative care is more than death & dying so please beware the pigeonhole. (But if you are reading this you probably know that already.)on the road to death, the equivalent of the ferryman inGreek myth who accompanied people across theriver Styx to the underworld."
"Dr. O’Mahony entered the field a decade ago, shaped by an almost messianic movement that began as a rebuke to traditional medicine but has become more and more integrated into routine hospital practice."Huh? What? Messianic movement? You mean this has something to do with making sure Jesus is recognized as the messiah of Judiasm? Why did this get put into the article? Can someone explain this?
"His coolness is his armor. “I do not feel obligated to be sort of eternally involved with the experience of death,” Dr. O’Mahony said. “It’s not healthy to be there all the time.” But the danger is that “death gets to be banal,” he said. “Do you know that poem by Dylan Thomas?” Dr. O’Mahony asked with a faint smile. “After the first death, there is no other.”"I have no problems with these statements in fact I agree with them. My problem is the poor follow-up and dropping of the subject of how to deal with high death acuity. Did the reporter have to include 'faint smile?' It leaves a lot open to interpretation which I don't feel is fair to Dr. O'Mahoney.
"But Dr. Nicholas Christakis...has found that doctors are generally bad at making prognoses." --(later in article)--“Doctors are the worst predictors,” she said after the session."
Now I adore Christakis' efforts and work. But this constant harping of poor prognostication by doctors based on anecdotal experience and a few research studies really undermines our field. EVERY medical decision is rooted in prognosis. And if we are so bad at it, why are we not paralyzed by our inadequacy. And if we are so bad where is the Medical Prognostication Manhattan Project.
"The better they know a patient, the worse they are at prognosticating, possibly, Dr. Christakis has theorized, because they view death as a personal failure."
I used to believe this but I think it is the rare doctor who sees death this way. It makes for a nice story but is this really the cause of poor prognostication or is the fact we are working with dynamic complex open systems of biological tissue (aka a human) a much larger part of the degree of difficulty? You can guess my answer.
"The bill would help validate the work of palliative care doctors..."
No! This bill does not validate my work. Not one bit. Feedback from families and patients like those found in the 177+ comments to this article validates my work.
"Palliative care still goes against the core beliefs of many doctors."
Hmmmm...do you like good symptom management? Yes. Is it important for patients to understand and be involved to their best ability in their own care? Yes. I hope these two aspects are core beliefs of every doctor because simply that is what palliative care is.
"The receiving hospital, she believed, was part of the conspiracy of denial, only too happy to get the payment for accepting the patient, who ended up dying before he could be evaluated."
We as a field have to be very careful about statements of the intent of other doctors to make money. I have heard other palliative care and hospice staff make these concerns and have had them myself. But without more proof, this is dynamite. The more likely explanation...tertiary hospitals need to be seen as gracious recipients and so they accept many even if there is not a large difference in care options. If they started saying no to another hospital more often, they might not see any more patients.
""“I can’t give a definite response in terms of the number of days or weeks,”
Dr. O’Mahony said. Mr. Migliore said another doctor at the hospital had estimated four to six months." While the context and supporting statements from Dr. O'Mahoney may have been edited, I think the article shortsights a palliative care teams ability to give some prognostic estimates to help with practical issues surrounding caregiving, family obligations, and time for the patient to plan appropriately. This is one of the things we get commended for the most from families and patients.
"Dr. O’Mahony has not spoken to Mr. Migliore since his wife died, and he does not expect to."Wit a high number of deaths for hospices and palliative care teams we should not expect to stay in touch with everyone, but the way the reporter worded it makes it sound like abandonment which was likely not the intent of Dr. O'Mahoney to convey. I don't expect this either, but the support for families often continues through grief and bereavement services.
"Once the ferryman has delivered his patients across the river, he rarely looks back."
Oh stop it with the metaphors already. It was bad to begin with.
So was I way off base or did you feel the same way?
15 Responses to “Palliative Care featured (again) in the New York Times”
August 21, 2009
I am right in there with you on this one, Christian. I read the article alternating "Yes!" one minute and groans the next.
It would be great if journalists sent back copy to the medical professionals involved with the story so that they could correct some of the misinterpretations before things went to print, but I suppose deadlines prohibit "fact check".
August 21, 2009
I'm glad I came upon your blog. I find it harder and harder to find my way through what is being reported and what is happening.
Mary
August 21, 2009
Very thoughtful commentary, Christian, which mirrored most of my responses (I was particularly peeved by the 'cunning' comment, and the overblown death metaphors). I do applaud the Times for its attention to 'The Last Months', but worry about fortifying negative images of Palliative Care as 'other' within medical culture, particularly as many have worked so hard to integrate our discipline. I don't know Dr. O'Mahoney, but hope we can hear from him in some way about how he feels about the piece and its portrayal of his work.
I would encourage folks to read the Comments too, as much as their time allows. I browsed the first 100 or so and found not only lots of validation and support, but also some thoughtful feedback about common issues in Pallitive Care practice, like the size of the 'team' in the room during consultations, the noticeable lack of primary or continuity physicians in many hospitalized patients' care, etc. Very good reading.
August 21, 2009
Pam,
I think the issues with checking the article after it is in near final draft is akin to undermining the journalism profession. From a journalists perspective it may be seen as letting the subject have too much sway over the reporting and therefore becoming less than the ideal objectivity. At least that is what a journalist told me when I offered to do the same!
Mary,
Thanks for your comment. Your Eldercare ABC blog (click her name) looks to have a lot of resources.
Phil,
Thanks for the feedback. In writing it i was concerned I was being a bit too harsh so it is nice to feel validated. I hope we hear from the docs in the story as well. If anyone knows them please feel free to tell them.
I completely agree about the comments section for the NYT piece. Lots of supportive commentary and a few things to take under consideration. I actually forgot to put that as the #1 pro of the article is the overwhelming discussion it generated. Maybe...if I have time I will get a chance to analyze the comments.
August 21, 2009
I share your mixed feelings about the article. Two ideas I find particularly bothersome, mostly for their ubiquity:
1)Discussions of palliative care often get reduced to whether it does or will save money. Why is this the deciding factor? Society should promote palliative care because it is the right way to care for people, whether it's cheap or not. No one asks if putting octogenearians on dialysis is going to save money, yet we have to do all sorts of psychic acrobatics to justify not doing so.
2) Why does everyone want to speculate that doctors don't like patients to die because it would be a personal failure? Are we really that egotistical? Other things equal, dying is a bad thing; I see no reason to put such a psuedo-Freudian spin on this feeling. Nevertheless, patients do die and deserve to be cared for properly when they do.
August 21, 2009
Christian,
Every one of your points is well made, and taken. Very thoughful, indeed. We tend, nonetheless, to read and evaluate articles on palliative care from an insider's view (we are "insiders", after all) and as a result we do pick nits. Stepping back to view the article from the perspective of a layperson reader (who is the intended audience, of course) I find the piece to be informative, illuminating, and edifying, which is just what the general public needs to read about palliative medicine.
As for the metaphor about the Greek ferryman, Charon indeed transported the already dead, so the metaphor may make for vivid reading but it wasn't an apt one for the point the author was making. And messianic was a poor choice of words to describe Dr. O'Mahoney's interest in his line of work.
August 21, 2009
Tim,
Very good point about our 'insider's' perspective, and the value of a piece like this to a lay audience. Even my my non-palliative medicine physician faculty colleages (including my chair) have emailed this piece to me in the past day, with comments to suggest they found it very thoughtful and enlightening.
August 21, 2009
I agree with you Christian. I was happy for more positive publicity of palliative care, but, like other commenters have noted, those of us in the speciality are sensitive to some inaccuracies. I was bothered by this comment: "Dr. O’Mahony suggested that family finances also played a part in decisions on hospice care, because Medicare typically covers only a few hours a day of such care at home." I imagine the reporter was referring to caregiving services not being covered, but hospice care is, of course, covered 100% by Medicare. This points to the larger issue of Medicare not covering in home direct caregiving but I worry people reading the article might think they have to pay out of pocket for a hospice program.
August 22, 2009
Im curious if anyone happened to read Charles Krauthammer's op-ed piece, "Let's be honest about counseling," that appeared the same day as the PC article. I'm not a fan of his but it had some interesting, if not cynical, points. Overall, I don't think he does much to dispel some of the negative views of Palliative Care.
August 22, 2009
Christian, I agree with you that there were many misconceptions about palliative care on the part of the author of this piece. It may have been helpful for the author to spend more time doing research or perhaps speaking to other palliativists before using tired and inappropriate metaphors to describe our profession (the one about Charon made me scratch my head the first time, and when they referred to it again I just wanted to hurl).
I'm not sure the layperson would have a fair understanding of what we do based on this article, although I think the author was well-intentioned. It just goes to show we have a long way to go as a profession to define who we are. Hopefully the next article in the NYT series will be more illuminating and better written.
August 23, 2009
Mike,
I liked your flipped approach to the money question. I may have to use that in my next ethics meeting.
Tim,
Thank you for bringing up the 'insiders' bias. (Does it have a more formal name?) And it was backed up (like Phil noticed) by the fact many people emailed me the link for this article and said 'great and interesting points here' or something similarly positive.
J Martin,
I had a a comment about the piece but it got edited out for length. My post was getting a little bit long and a few comments had to go. But that one does speak a bit to the fact that hospice can be trumped up to be a very great thing and then some families/patients are disappointed when the hospice nurse does not stay. A point anyone in the hospice would do well to make sure a family is aware of.
Paul,
Thanks for bringing up the Krauthammer piece "The Truth about Death Counseling" (Behind a WP sign in (but free) wall).
He actually got close to making some cogent arguments, especially on touching on the real world applicability of living wills. But some of the rhetoric also leaves a foul taste.
Anon,
I agree the author was well intentioned in writing the piece, so thanks for bringing that up. One might consider if her good intentions clouded seeing the potential negative views of how some of the terms and vocabulary choices were used. But that is more the editor's job.
Thanks all for the comments. Keep them coming.
August 24, 2009
Thanks for the point analysis. I read the article on vacation--20 people must have sent it to me expecting that I would have a positive response--and I was quite dismayed. This reporter spent a year following a palliative care service, was given front page, above-the-fold placement in the NY Times, and could not give a more accurate portrait of what we do than this cloying dribble?
August 24, 2009
Discussion of the New York Times article on Palliative Care, as you are doing in Pallimed, is important. Thank you for the work you do on this blog, I really enjoy it. My point of view is influenced by my training as an Internist Geriatrician, working in acute care medicine, dementia care, and palliative care for the elderly.
1. Communication: I don’t understand or embrace the so called ask-tell-ask communication principles for delivering bad news adopted by many palliative care writers. The New York Times provides a good demonstration of the limitations of this technique. If patients are to decide on the medical treatments they want, they must understand their prognosis and it’s our job as physicians to tell them. Trying to predict if they are “ready” is a slippery slope heading back to the pre Dame Cicely Saunders days when women with terminal breast cancer were not told what was happening to them, even at the end of their lives. Through the work of Dame Saunders physicians learned that disclosure is important. In Mrs. Migliore’s case, she was told her diagnosis and its outcome in very general, avoidance type terms that she did not fully understand. The open ended questions led to a circuitous discussion that was largely irrelevant. Just because Mrs. Migliore was able to articular wishes, such as continuing to shop for clothes, and wanting to live to take care of her husband, these statements cannot be construed as surrogates for goals of care or her underlying values without further in depth conversation, nor do these statements preclude a more diligent attempt to explain the prognosis. After all, the physician was able to clearly describe his opinion to the health care team, quite directly, “he predicted that her disease would progress, perhaps rapidly, through a series of crippling events.” Dr. O”Mahony says “she had responded to open-ended questions with a focus on the details of her everyday life, rather than a desire to foresee the future. He saw that as a road map for his approach to her prognosis.” This approach needs much more thought. In addition, for the minority of people who do not want to know about their disease process, they should be asked to appoint someone who can speak with the physician on their behalf to learn the details of the illness and make decisions for the patient.
2. Cognition: It is inappropriate to describe prognosis in a detailed way when people are confused to the point that they will not understand the information without a surrogate decision maker. In this case, Mrs. Migliore may have been delirious, even during the first encounter as evidenced by her history of two strokes, her tangential speech, and the described stupor after radiation therapy. This highlights the importance of assessing cognition and altering the approach to communication when delirium is present.
Laurie Mallery
Dalhousie University
Halifax, Nova Scotia
September 01, 2009
A late comment but as a "local expert" in palliative medicine, many people sent me the NYT article. In reply, I sent them your blog/review to show how seriously we PC types take our work...the importance of listening (and reading) intently BEFORE we carefully find the best words to support the patient and to convey meaning.
September 01, 2009
I think like most of us I had everyone, mom included, emailing me this. What I find most interesting is that most 'lay readers' of this in my life have reacted to the article uniformly positively - it's nice someone saying nice things about palliative care. And it is, to be sure; imagine how much worse the article can be. The closeness of it is what makes what's 'wrong' with it so troubling for us.
Laurie your points are well taken: I think it's impossible to have a worthwhile 'goals' conversation without establishing a half-way common understanding of prognosis & options. I kinda hate the term 'goals' used outside professional circles - it's jargon, understandable to us but not patients. I have had several residents tell me things along the lines (regarding dying patients with short prognoses) 'I asked them what their goals were and they said 'to get better/live to be 100/live 5 years/cure their cancer' or some such variation. We'd all like that.
My own agenda here, which shouldn't be surprising to anyone who reads the blog: like it's mentioned in one of the comments I think - someone saying why do you need all this training to do that (essentially why can't a social worker do this - NO OFFENSE TO SOCIAL WORKERS) - I don't think the article helps explain why in fact a medical specialty is needed to do this work. That's my bummer.
Oh and Christian - welcome back. I haven't written a post since you returned because I'm so tired reading yours! That's a joke - I'm tired for other reasons - but good to have you back my friend.
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