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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.

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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.

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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.).

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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.

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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).

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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.

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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.

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2008 marks the 11th year of the nation's first physician-assisted suicide (PAS) state law, also known as the Death With Dignity (DWD) Act. Every year by law, the Oregon Department of Health Services releases an annual report and characteristics of the patients who died and received prescriptions for the intended self-administration to hasten their death.

The summary of the 2007 annual report is now available for pdf download as well as the supplementary data and all annual reports from the Oregon DHS website. Since this may hit the news and your patients and colleagues may ask how this relates to palliative care where you practice it is important to become somewhat familiar with this report.

For background, here are the Pallimed posts from Annual Report 2006 and Annual Report 2005, as well as a primer on confusing hastened death terms.

The basic summary highlights that the small increase in the number of deaths under the DWD act. There was a fairly significant increase in the number of prescriptions given in the past year, but without a similar rise in the deaths via PAS.

It is important to look at the other outcomes of patients who receive a prescription, because it is not just life or death by DWD. The other outcome is that a patient dies by natural means without ever ingesting meds for physician-assisted suicide. The graphs with the annual reports do not show this trend well, which is why I have laid them out in two different ways.

The first graph shows the change over the past 10 years in absolute numbers and the second shows the change in percentage. The three outcomes are: death via physicians-assisted suicide/DWD (red), death by natural means (beige), alive (green). As you can see there was a larger amount of patients who died by natural means in 2007 after receiving a prescription. Most people interpret this as reinforcing the control a patient has in a situation with increasing loss of control, dignity (86%) and autonomy (100%) % indicates number of prescription recipients whose physicians marked these reasons for the request for PAS. These existential sufferings are not exactly manifested as a simple depression and inherently difficult to treat with medications or intense human interventions as any palliative care person will tell you. I quote Drew from an earlier Pallimed post:

"Death, pretty much by definition, sucks--full of anguish in even the best of circumstances--for patients, families, and frequently clinicians."

But as he goes on to say in the post, it doesn't mean we need to stop trying to work with dying patients and families to make the most of bad situations. As more PAS legislature get presented in states across the US, how will our field respond when they look to us for advice? (By the way Kevorkian is running for Congress. Hold on to your hats, the media should have fun with that one.)

Another way of looking at the proportion of PAS deaths is there are 15.6 PAS deaths for every 10,000 deaths in Oregon or 0.156% Oregon deaths. Other interesting data to review is that no African American has received a prescription from the PAS despite being 1% of all deaths in Oregon. And although the numbers are small so it is hard to draw a conclusion, Asians have had a larger proportions of PAS deaths compared to all Asian deaths in Oregon (54.6 Asian PAS deaths for 10,000 Asian Deaths in Oregon). Email me if that last sentence doesn't make sense.

The other demographics show most were older 55-84 year olds making up 75% and most ahd some college and all had insurance, so less likely to reinforce a poverty/low SES discrimination slippery slope argument against PAS. In fact the most heavily weighted non-disease demographic likely to use PAS were those with Baccalaureate (83/10,000 deaths) or Post-Bacc degrees (113/10,000 deaths). Any hypothesis on why the advanced degrees are more likely to make use of PAS? We don't know how many of those people are also health care professionals.

HIV/AIDS, ALS are the diseases that more associated with PAS with oral cancer being the highest odds ratio of using PAS. Interestingly CHF and COPD are very very underrepresented in PAS deaths, possibly secondary to the more fluctuating course of the disease?

Complications (yes this could go wrong) were few, including regurgitation in 3 and a unexpected length of 3.5 days after ingestion before death occurred.

So I hope this enlightens some to what is often glossed over or misunderstood or not even realized at all. I cannot tell you how many medical students, residents, nurses and other health care professionals lack basic background knowledge on this subject. Make up your mind either way, but start with some facts to make sound reasoned arguments for or against.

Homework question given to me from a medical student with a small Pallimed prize to anyone who can answer this correctly for me (in the comments). Drew has speculated on an answer but we don't have anything definitive yet.

If a person dies by physician-assisted suicide, can the family still collect on the insurance policy, or was that even considered when the law was legislated?

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Dr. Pauline Chen, author of Final Exam: A Surgeon's Reflections on Mortality, now available in paperback, took some time to answer a few questions from Christian Sinclair and some Pallimed readers. (Click here for the Pallimed book review.)Sinclair: Self-care is a common concern with palliative care professionals, especially as a valuable tool to prevent burn-out with the large emotional toll we face. As you discuss in your book, surgeons in training now have less time to spend in the hospital with the 80-hour workweek, and therefore are likely to spend a higher percentage of time in the OR instead of at the bedside. With surgical training focused on the operations and with possibly less time at the bedside, how do you see the role for teaching self-care in surgical residencies?

Chen: My sense is that all physicians, not just surgeons in training, are increasingly finding themselves having to choose between self-care and patient care, as if they were two mutually exclusive pursuits. Some of this choice is probably self-inflicted; we are all driven by that professional ethos to do the best by our patients whatever the cost to ourselves. I also think, however, that the overabundance of what we can, but not necessarily should, do also adds to this sense of conflict. There are so many treatment options available now that it’s hard for us – and for our patients – not to feel obliged in some way to spend as much time trying as many of them as possible.

Limiting work hours for residents was truly a radical effort to improve patient care and self care. But unfortunately, I think it has inadvertently created even more of a self-care versus patient care conflict for the youngest in our profession. Yes, trainees now have a better quality of life, but they also have to think about how they are going to use their limited clinical time on a weekly, if not daily, basis. Am I going talk to Mrs. Jones about those intraoperative findings of metastatic pancreatic cancer or go scrub in on a liver resection? Those are difficult decisions for young doctors to have to make, and I think they are made worse by the fact that residents feel they must sacrifice some patient care experience for the sake of their own self-care. In many ways, I feel relieved that I never had to make those kinds of decision as an intern or resident.

I don’t think I have the answer to how we doctors in our day-to-day lives can embrace good self-care and good patient care. But I do believe that we might be able to improve the current situation by talking more with one another about these issues. There’s a kind of solitude in clinical work; much of what we do finally boils down to that one-on-one with patients. Yes, we interact with colleagues, but we don’t often discuss issues that relate to our own self-care. Perhaps if we did, we might be able to bring self-care and patient care together in new ways.

A few months after my book was published, a girlfriend met up with a former colleague of mine, a doctor with whom I had worked fairly closely for four years. This colleague told my friend that the stories in the book were so similar to his own; he had no idea I had had so many of the same feelings and experiences. When I heard about this exchange, a part of me was delighted that the book had resonated with him. But another part of me asked: why had we never talked to one another about it but just soldiered on in our work alone? Here, I thought, was a lost opportunity for us to have practiced good patient care and good self-care.

Sinclair: One of the policy constructs that may impact approach to end-of-life care is surgical and hospital mortality rates. In times when a patient decides to forego further aggressive treatment after a surgery, how do you think mortality statistics affect a surgeons willingness to consider a primary palliative approach? Are there any suggestions to reform mortality statistics so surgeons are not statistically or financially (insurance) penalized for the decisions of patients?

Chen: On some level, I think that all of us are concerned about being penalized because of statistics, but I don’t think that fear is the main reason why some doctors are hesitant to consider palliative care.

In the case of surgeons, I suspect there is something even more profound that causes such hesitation. I think it is a particularly acute sense of failing yourself, your patient, and even your profession. That sense of responsibility is instilled into surgeons from the time they are interns.

As a junior resident, I remember watching a fellow resident learn that lesson from one of our attending surgeons, a gifted and highly respected elder statesman at my training program at the time. The resident was eager to leave the hospital one afternoon, even as one of the patients under his watch became unstable. The attending surgeon stepped in front of the resident, literally blocking his path out of the hospital and pointing back at the patient’s room. “Son,” he said in the sternest voice I had ever heard him use, “once you lay your hands on a patient, that patient is yours.” The resident ended up staying at the hospital late into the night; and I don’t think he, or I, ever forgot that lesson.

One would assume that this highly refined sense of responsibility would fit seamlessly with the goals of palliative care. Instead, it somehow makes it more difficult. While the strong connection with patients can inspire some heroic caregiving on a surgeon’s part, it also makes it easy for surgeons to interpret therapeutic “failure” as a personal and professional one. It is devastating for surgeons when patients are dying because it’s hard not to wonder if the outcome is, in some way, our fault. Moreover, surgery is a particularly solitary specialty and these deaths end up becoming something surgeons face alone…in a healthcare environment that barely gives any of us enough time to get the job done, let alone reflect upon it.

I think the real challenge for all of us is not just reforming our policy but also reforming our professional culture.

Sinclair: I have heard surgeons mention 'feeling betrayed' by patients who do not want to continue aggressive care, especially after a major surgery. A recent Time opinion piece recently covered this issue of changing goals while in the hospital. What is the role of the attending surgeon in mentoring surgeons in training for these difficult conflicts of surgeon-patient trust/autonomy?

Chen: I think the sense of “feeling betrayed” is quite complex; it assumes that we have, in some way, made a pact with one another, a pact which we have subsequently broken.

I suppose we all enter some kind of unspoken agreement when we become someone’s patient or someone’s doctor. But the more dramatic the treatment modality – major surgery, difficult chemotherapy, experimental medical therapy – the more complex and deeply embraced our assumptions will be in that unspoken pact. Unfortunately, doctors and patients rarely have the kind of discussions that are wide-ranging enough, deep enough, to touch upon those assumptions. All of us are under such difficult time constraints. Extrapolating further, it’s easy to see how feeling betrayed could come up more frequently in certain clinical contexts.

I believe that encouraging discussion may decrease the chances that any party will feel betrayed. And mentoring young doctors in this regard is particularly important because talking about deeply personal fears, hopes, and assumptions is not easy. I remember as an intern feeling terribly awkward asking patients even relatively straightforward questions, like how much they drank or whether or not they had unprotected sex. It is invaluable for young doctors to have more experienced healthcare professionals encourage these types of discussions and to model them.

Sinclair: Your writing style is a great demonstration of the ability to share patients personal stories and their medical obstacles. Could you share how you discovered and honed your writing craft as an outlet for your thoughts? And do you ever find yourself dictating in a more narrative tone, or doing creative writing in a more staccato SOAP note style?

Chen: I’ve always been drawn to people’s stories and to writing, but I did not write much in medical school or residency. There was no question in my mind back then that if I had any free time, I was first going to eat or sleep. But after my training was done, I found myself writing stories in notebooks, on my computer, and on loose papers in my white coat pockets. It was as if some pot inside had finally boiled over and I had to scramble to catch the contents that kept spilling out. Most of the pieces I wrote back then were fictional, and nearly all of them had some medical theme.

After a few months of this, I signed up for a writing course at UCLA, where I was an attending surgeon in the Division of Liver Transplantation. I ended up taking two classes. Midway through the second one, the instructor asked to meet with me privately. I was convinced that she was going to ask me to tone down the graphic clinical details of my stories or to repeat the course since I had missed several classes because of transplants. Instead, she said simply, “Pauline, you have to write these stories.” She recognized my short stories as thinly veiled personal narratives; and her comment gave me the kind of permission I needed to write what I really wanted to write about. That is, my experiences with patients.

I began then to write in a more organized fashion, and as I collected the stories, I saw that a fair number of them had to do with grief – grief over patient complications, grief over deaths, and grief over the kind of care I had provided over the years. But some stories were also hopeful; they involved nurses, doctors, or other health care professionals who had pushed me to think or to act a little differently. Unbeknownst to me at the time, those clinicians were teaching me about palliative care.

They were showing me that there was much more we doctors could do for our patients than simply cure.

In retrospect now, I think that writing the stories gave me an opportunity not only to reflect on the past but also to consider ways in which I might improve my work in the future. As I wrote these stories, I was in fact experiencing narrative medicine, a field which uses writing, reading, narratives, and the approaches used in literary criticism as a way to improve ourselves as health care professionals. And what was emerging for me from this experience was a greater understanding of and appreciation for the power of palliative care.

My creative writing has occasionally spilled over to my clinical writing, but only in the most minor of ways. I suppose I use the passive voice a bit less now. But that’s about it. I think it’s like when I am sewing material rather than flesh. Once in awhile, I may use a one-handed knot to end a repair of my kids’ clothes, but I would never think of pulling out a needle driver and the loupes!

Sinclair: Transplant surgeons and palliative care physicians share some of the same patients given the mortality for patients in transplant lists and the cooperation on patients that are potential donors. Are there ways you see transplant teams and palliative care teams working well together? What pitfalls exist if these teams work too closely together?

Chen: I have always been a big proponent of multi-disciplinary patient care. In fact, one of the reasons transplantation and oncology interested me as a surgical resident was that each field placed a lot of importance on incorporating different disciplines in the care of patients.

To be honest, I see very few, if any, pitfalls to these teams working closely together. I think that there are terrific benefits for both disciplines and, of course, for patients. I believe that a key component of quality care is providing meaning-centered care, and a more diverse group of health care professionals is better equipped to offer that kind of care.

As someone trained in transplant surgery, I think that the presence of palliative care experts is a reminder of just how many things we can provide for our patients and how much better we can make their lives, even in the most difficult of circumstances. My guess is that transplantation presents an interesting challenge to palliative care experts. In transplantation, we often talk about how our concerns extend not only to the recipient but also to the donor and to the person on the waiting list who might have died because s/he was passed over. It’s a very unique situation in medicine, one that makes clinical decision-making particularly challenging.

Sinclair: Similar to your background, I am a physician, parent of twins and writer (for Pallimed), and so I sympathize with your time constraints. How do you balance the demands of surgery, family life, and writing? Do you have one or two shortcuts/tips you couldn't live without? And do you have any tips for physician-writers who want to get a book published?

Chen: I’m not sure any of us has the answer, and the constant juggle (chaos actually!) of my life is a humbling reminder of a friend’s wise words: we might try to do it all, but we cannot do all of it at the same time. She, amazingly enough, is a neurosurgeon, wife, mother of three, author, art gallery owner, and political activist….but not all at once.

I think there is always this process of reassessing how you spend your time. It is sort of like internship. As a senior and chief resident, I used to tell the surgical interns to make a list of the most important things in their life. Then I asked them to cross out everything except for the top two or three items because that would be all they would have time for during internship. I think I always have this internal list of priorities in my head that I am constantly reassessing.

In terms of writing and publishing, I tend to believe that people who start their professional lives doing things other than writing – like doctoring or nursing -- actually have an advantage when it comes to becoming published writers. They have the benefit of experience and the confidence that comes with having already successfully become whatever those other jobs required them to be. They can apply those experiences – learning to become a doctor, a nurse, a social worker, etc -- to the process of becoming a writer.

For example, in my surgical training, I learned that only with frequent practice in the operating room could one liberate the art of surgery. As a medical student and surgical resident, you learn to operate by first learning to tie knots and wash your hands. You keep tying knots and washing your hands until you can throw those sutures and scrub up in your sleep.

After that, you begin to cut. And then you start operating. And you practice and practice and practice until one day you find that operating is the most natural of actions.

When that operating becomes natural, you discover something. You suddenly go from being wholly focused on every one of your actions -- how to hold the knife, how to hold the needle driver, where to place the stitch -- to thinking about the larger picture -- how the operation as a whole is preceding, how the patient is or will tolerate certain maneuvers, how even to coordinate the relative strengths and weaknesses of your current operating team such that the operation proceeds most smoothly. You see certain shortcuts, refine ways of moving, cutting, suturing, all of which make your operating look more like a well choreographed ballet than a step-by-step technical procedure.

What you have done, after practicing technique over and over again, is you have liberated the art.

I have approached writing in the same way -- it’s really the way I know best to become proficient at something. Although I don’t think the craft of writing is all that second nature yet, it is certainly less daunting that when I started.

Sinclair: Are you currently in a program that oversees any trainees? If so, what current lessons (formal or informal) do you teach your trainees about interacting with dying patients?

Chen: I am not currently affiliated with a teaching program, though I soon will be. I would like to think, however, that all the work I do -- writing, lecturing, or working in a clinical setting – will in some way help trainees care for patients and themselves. I don’t think it’s easy for students and young doctors to be thrust into the roles our profession requires. There is such a tremendous amount of responsibility right from the start, responsibility that encompasses not only clinical decisions but also human relations.

I am not perfectly accomplished at all of this myself, but I do hope that my attempts to be honest and self critical and thoughtful about my work will help others do the same.

Sinclair: Blogs have been a place for health care professionals to try creative writing as an outlet. Are there any medical blogs that you read?

Chen: I am a fan of your blog! I do read medical blogs when I can and find some of them to be really good reads. I think the best of them have both a sense of immediacy and great honesty. I recently came upon an MD blogger who posted a comic strip of her medical school surgical clerkship. I couldn’t pull myself away from it because her humorous take on the difficult truths of medical school rotations had me laughing so hard.

Sinclair: Your book underlines a modern movement in medicine to avoid a purely biomedical approach to care to one that is more biocultural (see: Stories Matter: The Role of Narrative in Medical Ethics). How did/does your anthropology background affect your approach to medicine?

Chen: My anthropology background has had a tremendous effect on my approach to medicine. I was fortunate enough as a college student to have worked with two anthropology professors who were not only brilliant teachers but also truly exceptional mentors.

Anthropologists, particularly medical anthropologists, have long understood the interplay between culture, illness, and meaning. Their work has helped to illuminate the ways in which culture influences the experience of illness, the language used to report it, treatment decisions, doctor-patient interactions, the relationship between risk factors and social supports, and even the particular environments that may affect physiological reactions and the gene expression of certain diseases

One of the most important things we do as clinicians is address the suffering of others. That suffering encompasses not only physical discomfort but also a loss of meaning and purpose in life. We need to be able to address that loss in ways that are meaningful for the patient. We need to be empathic witnesses to those we care for. I think anthropology is terrific training for doctors in this regard.

Sinclair: The MELD score has been probably one of the more robust examples of prognostic tools actually used in everyday clinical medicine. Do you see an appreciation for the skill and tools of prognostication in the field of transplant surgery? Or is prognosis underplayed in deference to the complexity and uncertainty of everyday life?

Chen: There is an ever-increasing discrepancy between the numbers of patients on the transplant waiting lists and the number of organ donors. Even with the growing numbers of living donors -- who I think are truly courageous and inspiring individuals – approximately 18 people in this country still die every day waiting for a transplant. And that number keeps increasing. The relative scarcity of organs has made it necessary to predict, as well as we can, which patients will be sick enough or too sick for a transplant.

But I think that anyone who has used a prognostic tool quickly realizes just how inadequate they are, even ones as well researched as MELD. In a strange way, MELD and all the other prognostic tools in clinical medicine only emphasize to many of us just how complex real life is.

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Witnessing so much death and illness plays a large role in the informal curriculum of who physicians eventually become as professionals. During our medical school and residency years physicians are influenced greatly by volume, intensity and often times sporadic support received in caring for dying patients. Thankfully this hit or miss approach is changing, but slowly. The inclusion of palliative care in the curriculum of many medical schools and the growth of palliative care physicians to lead as mentors to students, residents, and other attending physicians in approaching death in a more supportive, helpful and person-centered way.

Dr. Pauline Chen, the author of FINAL EXAM: A Surgeon's Reflections on Mortality, now out in paperback, has been on a book tour, and traveled through Kansas City (Sinclair), Milwaukee (Rosielle) and New Haven (Quinn) hitting a Pallimed trifecta. Of the three of us, I was the only one who did not get to see/meet her in person. But she did agree answering a few questions for us, which you can find in the Pallimed interview. Now on to the book review.

Dr. Chen, a transplant surgeon, penned an excellent book which takes you through her training as she encounters death in medicine's many forms: anatomy lab, Morbidity and Mortality report, , the first code blue, transplantation organ harvest after brain death and others. She writes skillfully about each and the lessons learned without trying to fool the reader into thinking she 'knew it all along.' By allowing us into her thoughts and worries, she graciously allows us to see her foibles, but eventually demonstrates how these lessons have shaped who she is today. In reading this book, I too recalled events from my training long thought forgotten. To be able to witness Dr. Chen's uncynical growth in response to caring for the dying is helpful for both the health care practitioner and for the public as well.

An excellent quote summarizing the effect of medical training:

"Ultimately they will settle at a comfortable equilibrium point, and this act of creating a new moral paradigm - detached concern, secure uncertainty, and humanistic technology - marks an important step in the transformation of the lay medical student into full-fledged professional physician."

While those palliative care practitioners searching for a way to better communicate with surgeons about palliative care issue will not find a panacea in this book, you may find this book might be a good bridge to start discussing how much of surgery really can be palliative.

Dr. Chen's website has a reader guide and posts by Dr. Chen about her book tour. You can purchase the book from Amazon (of course), but I know Rainy Day Books (an independent bookstore in Kansas City) still has a few signed copies if you are interested. (Disclaimer: No kickbacks here!) Be sure to also check out the Pallimed Interview with Dr. Chen.

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On not feeling our patients' pain and some briefies...

1)
Christian's last post mentions the Academic Medicine article about fading empathy in medical students which has received a decent amount of press in the last week or so (free full-text of the article here) & I wanted to comment further. The study, despite its limitations (single institution, uses a single questionnaire-type instrument to measure empathy) is almost certainly measuring a universal and real phenomenon - loss of medical student empathy during the four years of medical school (one would love to see these students tracked over 3-6 years of residency training as well), with better preservation of empathy in those going into 'core' specialties like family & internal medicine. The commentaries about the paper have mostly decried the fact that empathy is beaten out of students during their training and wondered how this can be improved. The article itself, in its discussion section, has a really good discussion of the all-powerful 'informal curriculum.'

I want to make a somewhat contrarian position on this paper however: that learning how to attenuate one's own visceral empathy is in fact an important and adaptive part of becoming a physician. (Warning: I'm not an empathy researcher or expert, and am taking at face value the paper's own presentation of what they meant by empathy and what their instrument was measuring - if I'm wrong please shoot me down in the comments!) This study measured what they called 'vicarious' empathy:

Sociologists and psychologists have divided the concept of empathy into two main definitions or types: vicarious and imaginative. Vicarious empathy is an individual's vicarious emotional response to perceived emotional experiences of others and imaginative empathy is an individual's ability to imaginatively take the role of another so as to understand and accurately predict that person's thoughts, feelings and actions. The first definition reflects an innate emotional response, that is, a gut reaction, and is equivalent to the empathic concern described by Davis; the second definition refers to cognitive empathy and reflects a learned ability to imagine and intellectualize.

They also note in their introduction that the data have been conflicting about whether imaginative empathy attenuates during medical training. My argument is that 'imaginative' empathy is what is necessary for compassionate, patient-centered care, and that vicarious empathy is not. If I went around feeling viscerally all or even most of my patients' emotions, I'd be a wreck. In fact I constantly guard myself against feeling, 'in my gut,' my patients' emotions - it is an easy thing for me (and probably for many of us in this field) to do and I would be constantly overwhelmed if I did. This is a very different phenomenon from being aware of my patients' emotions, aware of how they affect them and their decisions, of how it needs to affect the way I and other clinicians interact and speak with them, of the 'room' those emotions may need, etc. This is a critically important bedside skill for all clinicians, but it doesn't require us taking on our patients' feelings, and one could argue vicarious empathy could potentially inhibit sound decision making and an attentive 'bedside presence' that people need in times of distress. None of this is to detract from the reality that I think there is a crisis in empathetic, patient-centered care in medicine - I worry however that this study is mis-identifying the crisis.

I'm particularly interested in this from a palliative care training standpoint and the fact that a key part of training PC clinicians should be to understand the difference between the two, and the fact that it is possible and at times advisable to 'fake' empathy at the bedside without 'feeling' it, and that a compassionate bedside presence is a learnable skill which doesn't require you to be emotional.

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A couple from Cancer....

First is a look at bereaved family members' perspectives on end of life care, with a focus on advance care planning. The (deceased) patients were involved in a palliative/supportive care program relatively early on in their disease, and had relatively high rates of advance directive/living will completion (~80%). What I found most notable was that the family members perceived that completing an AD actually impacted patient care in about half the cases (mostly for the good). This strikes me as high, and certainly other research has found no impact of AD's on care, and one wonders if the presence of an AD impacted the family members' perception of care...improved their perception of the quality of care in some way....?

The other one is about prognosis in stem cell transplantation, and compares a comorbidity index (HCT-CI) with the Karnofsky performance status scale - this is a relatively technical study and I'm including it mostly for the prognosis completists amongst our readership. It is a retrospective review of prospectively gathered data in ~400 patients who underwent allogeneic SCTs. Essentially they found that the HCT-CI was a better predictor of mortality and toxicity than the KPS, and they developed an index which combined both measures (patients with the highest risk on this index had a ~70% mortality at two years, 50% mortality was at ~9 months).

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A couple for the teaching file:

American Family Physician has published guidelines for patient-centered communication at the end of life (free full-text here). It's a practical overview of approaching breaking bad news, discussing prognosis, care transitions, etc.

Chest has a discussion piece exploring the competencies pulmonary/ICU docs need to provide appropriate terminal care. It's mostly an overview of death in the ICU & contains a thorough and valuable literature review on the subject.

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JCO has a study looking at patient's preferences for supportive cancer care. The study involved 300 patients who were receiving chemo or radiotherapy (mean age 58 years, the vast majority had an ECOG performance status of 0-2) whose referring oncologists believed that they would likely die within 6 months without antineoplastic treatment (actual 6 month mortality was 15%). They were asked to rate the importance/helpfulness of various services to them - some of these services are part of the hospice benefit (e.g. chaplaincy, visiting nurse, home health aide, respite care, etc.) and some were not (specifically these were: "a nurse case manager, a voucher that would allow patients to purchase home care services from a family member or neighbor, a meal delivery program, transportation to medical appointments, care for dependents (children and adult parents), and peer support"). (The nurse case manager caught my eye - most hospices I work with use a nurse case manager model for their hospice care - perhaps however this is not mandated by the Medicare hospice benefit?)

They found that all of the non-hospice services were rated higher than the hospice ones; even for patients with ECOGs higher than 2, for those who died within 6 months, and even for those patients who said they wouldn't want (but yet were receiving!) non-curative chemotherapy. The authors' summary:

There is a growing recognition that patients with advanced cancer have substantial needs for supportive care. Because approximately half of patients enroll in hospice the last 3 weeks of life, and one third enroll in the last week, their needs for supportive care must be met in other ways. Open access hospice programs and bridge programs offer an innovative way to provide supportive care services to these patients. However, these results suggest that the package of services that such programs offer—some combination of a visiting nurse, home health aide, chaplain, respite care, and bereavement counselor—may not be ideally suited for patients who wish to continue receiving treatment. Instead, these patients may prefer to receive other supportive care services, such as peer counseling, transportation, family care, and case management. Even those patients who do not wish to continue receiving treatment seem to prefer alternative services. Therefore, the hospice industry should reevaluate the services that it provides in open-access or bridge programs as well as hospice programs and should consider offering services that are not part of the Medicare Hospice Benefit.

My own take on this is not that open-access or 'bridge' programs are missing the boat, it's that in fact the home hospice model itself (as defined by the Medicare Hospice Benefit) doesn't work well for many patients outside of the final stages (home-bound, no interest in or indication for further trips to the clinic/hospital, etc.) and who don't have strong family/friend support. There are holes, so to speak, and this research does a good job of identifying how important they are to patients. Hospices (mostly) are well aware of these holes too in my experience, and struggle with work-arounds. What's interesting too is how many of these things patients said they wanted were practical/day-to-day things - transport, financial support for family caregivers, meals, etc. One aspect of hospice care that they didn't ask patients about (and one that I mention a lot to patients who are otherwise 'appropriate' for hospice care but are struggling with the decision...accepting the 'H' word) is the availability of help 24/7 for urgent symptom/medical problems - the idea that a nurse will come out at 3am to assess them and that they don't have to wade through a tortuous clinic triage system is quite appealing (perhaps this, like the nurse case manager, is not stipuated in the MHB?).

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The web has been quite bountiful with small tidbits that relate to palliative care and I wanted to share some of these interesting links.

• Stumbled across this photo that could be very misunderstood by people who are not familiar with completing death certificates. It is very easy to read this as "dying by the following means are unacceptable", but anyone who has filled out a death certificate knows the coroner/vital records wants a more definite cause, and these terms are interpreted to be vague. (Found via BoingBoing) There is a Fast Facts on "How to complete a death certificate" for a quick review.

• A lot of blogs seem to be discussing futility and health care ethics lately, so I wanted to point you to a few. Over My Med Body! (a blog) is doing a series titled "Health Care's Broke," and starts off with a very thoughtful and provocative post on End of Life Care. Pretty impressive insight from a medical student. (He also has a great expose on a fake medical school in California.) Bob Watcher, MD (UCSF) also chimes in with a post on a more paternalistic approach to DNR's in 'futile' medical situations.
  

• Anonymous blogger Swivelchair at Neurological Correlates cynically extrapolates reasons your family may 'pull the plug.' You will see we exchanged comments on his blog so I could further understand his take. The reference is a great article that we seemed to have missed here from the journal Chest on "Family Member Satisfaction with End Of Life Decision Making." It is now on our list to highlight in a later post.
  

• Luxembourg passed a euthanasia law in late February similar to the Netherlands and Belgium. Switzerland does not legalize euthanasia but permits physician-assisted suicide, as does Oregon in the US. The Oregon yearly report on the Death With Dignity Act (Physician Assisted Suicide/Death) should be released in the next couple of weeks. Pallimed will be posting an update on those statistics.
  

• Dr. Bruce Campbell (ENT @ Froedtert/MCW) reviews empathy and medical training from a recent Academic Medicine article titled, "Is There Hardening of the Heart During Medical School?"
  

• The UK gives a grant of 20M pounds for improving/maintaining pediatric palliative care services. That is like $40M US. Sounds like a windfall but it is really a band aid.
  

• A French village is forbidden to have any citizens die secondary to a grave site shortage. The Mayor stated:

  "...all persons not having a plot in the cemetery and wishing to be buried in Sarpourenx are forbidden from dying in the parish. Offenders will be severely punished." [emphasis mine]

Image courtesy of flickr.com user gruntzooki under Creative Commons agreement

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If you are not already a regular visitor to palliativedrugs.com (free registration required), this would be a great time to dip into the Bulletin Board. They are having an excellent conversation about the various indications for and ways to order (or not) DNR, DNAR, Allow Natural Death, etc. I don’t think POLST is in the lexicon, but that’s the case in most of the US, too. The thread actually started in November, shortly after the publication of Decisions relating to cardiopulmonary resuscitation: A joint statement from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing. It was picked up again a couple of weeks ago.

Of note, the guidance specifically addresses the role of nurses on the care team in the decision-making process, and further places responsibility for an order on the shoulders of “the senior clinician,” who may be a nurse in the case of a nurse-led palliative care team. It also stresses that regardless of the identity or discipline of the senior clinician, such decisions are made in context and as part of a team process. In the Bulletin Board conversation there emerges some slight discomfort with this nursing role, but the main thrust, as would be the case anywhere, is fitting actual patients scenarios into the frame work provided. Definitely worth the read.

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Betty Ferrell & Nessa Coyle have just released a new book with the intentionally non-original title, The Nature of Suffering and the Goals of Nursing (the link takes you to the ELNEC web site; scroll down to the last bullet). This book is much shorter, much less dense, and more immediate & personal than Eric Cassell’s The Nature of Suffering and the Goals of Medicine. Please do not read any criticism of Cassell into that sentence. His work is marvelous & seminal. In fact, Ferrell & Coyle’s book is a great introduction to Cassell’s.

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A study in the February Annals of Emergency Medicine looked at patient perceptions of length of time spent in the ED, as well as some questions intended to address patient satisfaction (responses were in a standard 5-point scale): the provider “had a good bedside manner;” “cared about me;” understood my problem.” There was actually a fairly complicated design, which I won’t detail here. The results were somewhat predictable, but with one surprise finding. Patients overestimated the amount of time the provider spent with them when the provider was seated, and underestimated when the provider stood. In addition, seated providers got better scores on each of the questions listed above. However, surprisingly, overall satisfaction was not affected by sitting vs standing. There was plenty of room for confounding, as there was a low patient:provider ratio (224:36), and who knows how many non-verbal cues that can never be accounted for. The subjects were randomized, however, in an effort to decrease confounding.

This was not a palliative care study. Palliative care is certainly done in the ED, but we generally think of palliative care clinicians as having more time than a busy ED clinician would have. It certainly makes sense that, in any clinical encounter, the patient is more likely to feel attended to when the clinician sits, rather than stands (seeming always to be at risk of running out to something more important).

What makes this study more generalizable, though, is the accompanying editorial by a “scholar and teacher of communication studies.” The author takes a cultural approach (organizational and professional culture, that is) that is enlightening and an enjoyable read. Her final comment, that could be addressed to any discipline or clinical setting:

In the end, whether sitting or standing, emergency physicians are charged with a difficult performance: they must care equally for all patients, express empathy, listen to the patient story with a “compassionate” ear, yet maintain their own clinical expertise. And while doing this, it is important that they communicate with rather than to their patients.

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Since blogs are a fairly new medium, there are few standards out there on how they relate to the 'old media,' especially when you consider the world of academics and medicine. Blogs are ephemeral much like journals; they reflect a point of view at a certain place and time. They do not necessarily have rigorous editorial standards or the same degree of permanence or authority as journals. They may be considered less authoritative then a formal presentation, although many formal presentations are two parts opinion to one part fact.

Regardless of where a blog post lands on the authority or importance scale, if you ever wanted to formally cite/credit where you got a reference from here is how you would do it (from NLM citation guide):

R = Required, O= Optional

Full scheme:

Author/Editor (R) | Author Affiliation (O) | Title (R) | Content Type (O) | Type of Medium (R) | Editor and other Secondary Authors (O) | Place of Publication (R) | Publisher (R) | Date of Publication (R) | Date of Citation (R) | Availability (R) | Language (R) | Notes (O)

Required Only Scheme:

Author/Editor (R) | Title (R) | Type of Medium (R) | Place of Publication (R) | Publisher (R) | Date of Publication (R) | Date of Citation (R) | Availability (R) | Language (R)

Required Only Example (example adapted from NLM website)

Sinclair CT. Pallimed: A Hospice & Palliative Medicine Blog [Internet]. Milwaukee: Drew Rosielle. 2008 Mar - [cited 2008 Mar 7]. Available from: http://www.pallimed.org/.

Interestingly they do not seem to identify the periodic nature of blogs which would help the reader reviewing the citation more accurately identify the post in question. How would you know which of hundreds of posts the citation was referring to? Also language is less critical and rarely mentioned unless other than English for most medical journals. And place of publication is rather irrelevant for blogs as well as publisher since we are not part of a formal publisher.

So to be more accurate and concise, I would think this approach to citation would be more helpful:

Pallimed Proposed NLM Style:

Author/Editor (R) | Title of Blog Post (R) |Name of Blog | Type of Medium (R) | Date of Publication (R) | Date of Citation (R) | Availability (R)

Example:

Sinclair CT. Two Weeks of Life - Memoir; Placebo JAMA Study. Pallimed: A Hospice & Palliative Medicine Blog [Internet]. 2008 Mar 4 [Cited 2008 Mar 7]. Available from: http://www.pallimed.org/2008/03/two-weeks-of-life-memoir-placebo-jama.html

But that is not necessarily the official way. Just my two cents.

Here is how JAMA (& presumably Archives journals) publish blog citations:

13. Levy P. Blackberry cold turkey [December 18, 2006]. http://runningahospital.blogspot.com . Accessed December 6, 2007.

Here is the direct link to the original post from Running a Hospital.

The National Library of Medicine has a more exhaustive resource on citing medical references from online resources so if you have questions go there.

Here are the specifics for Pallimed if you need to cite more accurate information:

Official Title: Pallimed: A Hospice & Palliative Medicine Blog
Editor: Drew A. Rosielle (Rosielle DA)
Contributors: Christian T. Sinclair (Sinclair CT) & Thomas E Quinn (Quinn TE)
Publisher: Drew A. Rosielle
Location: Milwaukee, WI

To find the exact URL for a specific post, click on either the title of the post (at the top) or the date of the post (at the bottom)

You can also cite comments sections, but the rules for that are a bit more complex so please reference the NLM website for more information. For MLA style citation of a blog/website, see the OWL at Purdue. For APA syle citation of a blog/website go here. Both are services of the OWL at Purdue, a online tutor/guideline service. If you don't know the difference between the two, here is a good comparison.

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Briefies, in no particular order:

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Author Eleanor Clift has written what looks to be a fine book titled: Two Weeks of Life: A Memoir of Love, Death and Politics. (Not related to the recent film Two Weeks) USA Today featured her book which contrasts the private dying experience of her husband and the public experience with Terri Schiavo. The book features some writings from her husband, Tom Braziatits, as he reflected on his illness. The USA Today article does a splendid job not perpetuating any hospice myths, and Ms. Clift (on the National Hospice Foundation board) has some wonderful quotes in the article. her are just a few that capture her hospice experience:

Out of habit, she says, "I found myself asking, 'Tom, did you see my Diet Coke?' I knew he wouldn't answer, but it felt familiar."

"This aspect of life, the dying part, will happen to us all, and it's time that we get acquainted with how you do it," Clift says.

"As soon as I say it, I realize of course, that's exactly what he is doing. He is actively dying, and it is not a passive exercise, a slipping away. He is working at it."

Clift recalls being surprised he was so close to death, given that the hospice had just delivered the biggest bottle of Robitussin she had ever seen. Surely her husband was going to live for a while, or they wouldn't have given her such a big bottle.

And my favorite, because it has been a statement I have echoed since early in my palliative medicine career:

Death, she writes, deserves "the same honesty and humor we accord all milestones."

When families or patients are struggling with finding meaning while dying, I often compare death to one of life's many challenges and milestones. Being born, the first day of school, puberty, going to college, getting a job, getting married, having children, and many other times in life present great challenges that require personal strength, willpower, endurance, support from friends and family, acceptance of things you cannot change, and these are all celebrated in one form or another. And because of these milestones we become who we are right now; they change us. Death and dying shares much with these situations, but does not get celebrated or respected in the same manner, so I applaud Eleanor Clift for broadcasting this message.

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It is always interesting when the medical article from JAMA that gets the most press attention is not the major original, NIH funded, multi-center trials, but the 'lowly' research letter. Of course I am using 'lowly' in single quotes, because these letters often highlight important clinical (and social) issues that may never get enough funding to become of of the big shot articles. This week JAMA highlights a MIT study on Influence of Cost of Placebo Efficacy by Dan Ariely who has written a book called "Predictably Irrational." (Yes, that is the author in a picture from his website in a pleasure/pain suit). The WSJ blog covers the study well, so I won't rehash their review. The findings demonstrated subjects rated more pain relief from a standardized pain mechanism when they were told they were getting a $2.50 medication versus a 10 cent medication. I think this helps confirm what many health care providers have seen anecdotally.

It would be interesting to highlight how this study might be viewed from a hospice (or insurance or universal health care) lens. If you added a meta-level experiment which polled observers (of the experimental subjects) which medication worked better would the observers have the same placebo bias favoring the expensive medication. My hypothesis would be no, especially if the observer was told they were actually paying for the medication for the subject.

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Check out blog.bioethics.net recent post on the Academic Medicine article on how medical schools make students less empathetic. (or is it empathic?)