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There have been a few pieces in the media recently that have caught my eye in regards to how we as a society look at death and dying. The Montreal Gazette published an opinion article with the title "What if we could choose our time to die?" The author, Hugh Anderson, writes the piece in response to letters from his previous piece about growing old. He never makes a strong statement about hastened death, but his title alone is provocative to start a few conversations.

What if we took our current concepts of medical care and instead had a very open approach to time of death, similar, for example, to our medical approach to time of birth. Time of birth used to be wholly a natural event, for better or for worse, but the advancement of modern C-sections, medicines & delivery techniques changed the natural prognosis (expected timing and medical outcomes) for births. What would our current system of hospice, palliative medicine, and intensive care units look like if in 1950 American society determined choosing the time of your own death was an inalienable right? I doubt if we took the quick road to death that the modern hospice movement would have evolved as it did. Would this change our approach to organ transplants as well? What other areas of medicine would be vastly different because of this massive social change? If there are any literary minded Pallimed readers who would be interested in doing some creative writing, we could collaborate on an alternate history of the approach to death in American society. Exploring alternate history is a wonderful tool for insight into current situations and values via taking what we hold as normal and turning it completely around. I think you could take this idea and explore it in various outcomes, from dytopia to utopia. Obviously movies like Soylent Green and books like The Giver explore some of the social ramifications of euthanasia, but a focus solely on our medical culture would be an interesting approach as well. (Disclaimer: Not endorsing hastened death, physician-assisted suicide or euthanasia, just using these examples to explore the deep intricacies of such a profound part of life. Besides, Hugh brought it up, not me. I can't help wanting to share some potentially provocative ideas. Great dinner conversation!)

Speaking of how society feels about death, the Supreme Court heard a potential landmark case (Baze v. Rees, 2008) today noting the 3-drug lethal injection (thiopental, pancuronium, potassium) is unconstitutional because of the potential for severe pain without the ability to identify it (secondary to the paralytic). You can read the transcripts of the oral arguments here for you legal junkies. What is interesting is to read some of the amicus briefs in support, opposition and neutral positions. The American Society of Anesthesiologists weighs in as well as heavyweight medical ethicists/palliativists Robert Truog, Bernard Lo, and Margaret Campbell (with fellow critical care providers and ethicists.) One of the arguments heard today for changing lethal injection is to co-opt the methods for hastened death in the Netherlands or Oregon, by using inordinately large amounts of barbiturates. How would this change the debate on physician assisted suicide if it was a similar clinical approach to capital punishment?

Wired Magazine had a recent article showing us that death is nothing we need to worry about because of some new miracle drugs that focus on our mitochondria. Some great quotes are found in the article from bench researchers:

"They die of natural death ....probably their heart stops to beat!" wrote Fontana of the rodents in his and other studies, which betray little evidence of the histopathological lesions -- tissue and organ damage or abnormality -- mentioned by Bartke. "The animal drops dead and we cannot really know why.... One expanation (sic) is the failure of the electrical conductive system of the heart because of metabolic alterations.... No pain, no suffering, no medical and social cost for society!"

Well this post is already getting too long so I won't comment on the broad assumptions in the last part. Maybe it is because I fear I might lose my job if this comes true. But it did make me chuckle to think of how these little mice will change lifetimes of angst about death.
YouTube clip of Ingmar Bergman's The Seventh Seal - Knight Facing Death in Chess
(wait until about 2 minutes in, there are some great lines here)

• Did not see much press (unfortunately) about Dr. Byock's initiative for Reclaiming the End of Life and discussing this with Presidential candidates at town hall meetings. Since the NH primary should soon be over and the last news report on the website is Sep 2007, we might not see more action from this until the Presidential election in November.
  

• Speaking of politics, political candidates are (sadly) bringing up the unfortunate case of the 17 year old who died while awaiting a liver transplant as a way to point out failures in our current medical system. While most media outlets seemed to pitch the most emotional part of the story ("A girl was denied a life-saving treatment by an evil insurance company"), Maggie Mahar at Health Beat does a great job of highlighting the complex ethical issues in this case that has some good teaching points for palliative care (prognostic accuracy, second opinions, goals of care, etc.) There were not easy answers in this case, and there are many tragedies here as well, which now seems to by devolving into finger pointing.
  

• Feedback on some of the DonorsChoose Projects are included in the comments section. Thanks to all of those who participated on behalf of Pallimed!
  

• Winners of the HPCFUSA BOOK and Coffee Mugs will be contacted soon and later announced.

Pallimed will be represented at AAHPM by Drew and Christian so due to popular demand, we will be having another Pallimed Gathering @ AAHPM in Tampa, FL. We do not have the location yet, but we have planned on Friday night Feb 01, so mark your calendars and bring your friends. We had a great turnout last year, and hope to meet more Pallimed readers this year. Look here for more info soon.

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Happy New Year and welcome to 2008, which is Pallimed's 4th calendar year (we've been around since 2005), which seems like a long time to me, and perhaps should warrant a more festive or at least reflective post that the one I'm composing, but oh well.

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Journal of Clinical Oncology has an 'Art of Oncology' piece with the not-too subtle title and message 'Just Say Die.' That is - when you think a patient is in fact dying, or death is nearing, or whatever, to tell them that, D-word and all. It has the cheekiest table I've seen for a while in the article: column 1 contains actual quotes from oncologists to a dying patient (most of them awkward, and wordy), column 2 is labeled 'What the physician meant' (the translation of column 1) and every entry is 'You are dying.'

The question, at the heart of editorial, is essentially - is important to say die/dying/death to a patient if that's what happening - as opposed to some euphemism ('time might be getting short,' 'this may be entering a terminal phase') - as long as the patient understands what we mean? The author emphatically (although not dogmatically) that the answer is Yes to the above question, and gives several reasons, which go beyond 'it's the right thing to do,' and I'll excerpt my favorite:

"Clearly, the quality of an end-of-life discussion may influence the quality of the relationship we have with a patient. Forthright and clear exchanges will help nurture and develop better relationships while confusing discussions could cause irreparable harm. Death and dying are painful and emotionally charged issues. These words cannot just be thrown into the discussion for clarity's sake; they must be used with care and understanding to let patients know what physicians really mean. As Loprinzi et al suggest, "Such stark and life-changing information needs to be shared sensitively if it is to deepen, rather than injure, trust between patient and physician." Some of the most important talks we have with our patients will be those where we need to discuss their approaching death. These discussions help us understand how they view their future and their prognosis. Oncologists get to know their patients’ personalities well as they care for them, and our conversations (and the words we use in those conversations) are tailored for that individual. Will using the words "death " or "dying" be the right thing for every patient or conversation? No. But used appropriately, these words could help improve our discussions about death with many of our patients."

It's my favorite because it frames the conversation in reverse to how it's often conceived: as a way to build trust/relationship with a patient as opposed to a way of undermining trust (because we've failed them, because we are hurting them by telling them unwelcome information, etc.). It reminds me of times during my training when I was discernibly scared of telling a patient the truth, so much so that on several occasions I was patted on the arm by the patient him/herself and told, in as many words, 'There, there, I know this is tough for you.' Humbling moments, to be sure. Facing decline and death is frightening enough that most patients probably don't benefit from seeing their physicians fumbling for words in talking about it, afraid to name the facts of a situation....

As a perverse aside, I'll also note that when I first saw the title of this article I was instantly reminded of a Simpson's episode when Bart's arch-nemesis Side-Show Bob denied homicidal intent behind his writing of "Die Bart, Die" by claiming he was merely writing in German "The Bart, The."

The same issue also has an article about age as a prognostic factor for patients receiving treatment for non-small cell lung cancer (the data are taken from a couple therapy trials). The conclusion is that comorbidity but not age, per se, was associated with worse prognosis.

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Multiple from the last couple issues of Mayo Clinic Proceedings....

Most welcomed, to me, is a practical/clinical review of urine drug testing. It's readable and thorough, and answers many of the questions that come up (at least in my experience) regarding drug testing - ones that I'm asked a lot (e.g. oxycodone and methadone are not picked up by routine 'opiate' screening, sertraline can cause a positive test for benzos, and poppy seeds can lead to 'false' positives for opiates). As to that last point, they cite one analysis which suggested that a poppy seed bagel can have 1.5mg of morphine in it! Anyway, a good one for the teaching file.

There's also a brief discussion about engaging the 'hostile patient,' a situation familiar to all of us. It provides straight-forward, practical advice, and gives examples of language to use. Most appreciated is the discussion that defusing these situations and forging therapeutic alliances with patients can take just a few minutes. It's a teaching point I try to make again and again to residents when we're talking about communication skills: good communication does not take a long time (usually) - sitting down, pretending you have all the time in the world, asking the patient's understanding of what's going on, and sharing info with them/making recommendations can all be done in a matter of minutes in a lot of cases. Careful communication saves time in the long run. (Ok, I'll admit it, that's a 'talking point,' and one that I can't back up with data, but I believe it with sufficient confidence that I promulgate it. I often show little videos of breaking bad news interactions with patients - the 'bad example' is 2.5 minutes long & the 'good example' is 3.5 minutes long and includes therapeutic silence etc. I often ask residents how long they thought the interactions were, and they tend to substantially overestimate how much time was spent - especially the therapeutic silence - 10 seconds - it seems like 30 when you watch it. Anyway, the 3.5 minute video, which is a great demonstration of compassionate, patient-centered communication in which the clinician gives the sense that he has all the time in the world for the patient, is a great example for the residents that all these good communication skills are not time-consuming.)

And super briefly: there's also articles on hospitalized patients' expectations about interactions with chaplains (what they want out of their visits with them, how frequently they want those visits, etc.); on the content of patients' advance directives (i.e. whether they designate a proxy, whether they empower their proxy to withhold or withdraw treatment, etc.); and a single institution study about the prevalence of advance directive completion amongst health care providers at a cancer center.

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JAMA has an article comparing opioid prescribing in emergency rooms by race - white patients were more likely to receive an opioid for pain than African-Americans, Hispanics, and Asian-Americans, even after adjusting for pain severity and diagnosis (even, for instance, long-bone fractures). An associated editorial surveys global disparities in pain treatment, and doesn't mince any words:

"The overregulation of medicinal opium is an enduring and critical problem that contributes to the global undertreatment of pain."

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More quickies; will likely start blogging in earnest again after the new year.

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Multiple articles from Journal of Clinical Oncology:

a) First is one on oncologist communication about emotion during visits with cancer patients. It's a fascinating study, including from a research perspective: it involved audio-taping nearly 400 oncologist-patient clinic encounters (all patients had 'advanced' cancers). In this analysis (one assumes/hopes there will be subsequent ones) the researchers looked at patient disclosure of negative/ambivalent emotion, which they defined as creating an 'empathic opportunity' for the physician, and then looked at what the physician actually did. (Obviously there is room for interpretation as to whether a statement created an empathic opportunity or not, however the interrater agreement had kappas over 0.7 for almost every item they looked at.) Physicians gave responses supporting continued discussion of emotions for only ~1/4 of the opportunities presented them; younger physicians (who were more likely to be women than the older physicians and to rate themselves as responsive to the 'socioemotional' side of medicine) tended to give more 'continuers.' It would be interesting to see how patients rated their physicians' communication effectiveness, and how much they wanted physicians to attend to their emotions (although one imagines that a certain number of patients wouldn't be aware, explicitly, of those needs)....

b) There's also a trial of a 'psychoeducational' intervention for patients with melanoma. It involved 6 group sessions involving "education in health behavior with regard to malignant melanoma, stress management, problem-solving, and mutual support" (a control group received no intervention). This study was to look at long term survival, which didn't differ between groups. An accompanying editorial concisely looks over the ongoing debate as to whether psychotherapy improves cancer survival (it's cheekily titled 'Letting go of the hope that psychotherapy prolongs cancer survival').

c) Also: a study of cancer outpatients correlating feeling that one's spiritual needs are not being met with a poorer assessment of global quality of care & satisfaction with care; and in lung cancer patients, increased use of primary care services is associated with better survival (this is certainly a hypothesis-generating observation, however those with zero PC visits had a median survival of less than 4 months raising the possibility that being dead was a confounder for not utilizing your primary care physician!).

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Clinical Journal of Pain has a couple:

First is one on physician attitude towards opioids for chronic non-cancer pain. This was a single institution survey of ~140 internal medicine physicians (sample included housestaff and about 20% geriatricians) about opioids for CNCP. There were some general differences between general medicine docs & geriatricians (as well as housestaff vs. attendings), but one wonders if some of these differences were because the study is from Mount Sinai in New York, where the palliative care program is housed within the geriatrics division.

The other is a natural history study of advanced cancer patients who were switched to intrathecal opioids for pain. It followed 55 patients who had 'failed' systemic opioids (inclusion criteria were trials of at least 3 strong opioids by at least two different routes) - they were then treated with intrathecal morphine with levobupivacaine. Starting 24hour morphine IT dose was 1/100th of their 24hour PO morphine equivalent dose. Mean oral morphine (equivalents) dose was 466mg/day for these patients; mean survival was 71 days - these were sick patients. Basically they found that pain decreased (8/10 - ~3.5/10, as did systemic opioid use, as did confusion and drowsiness), and the 1:100 ratio was probably too conservative (but safe - most patients went through an initial doubling-tripling of their IT dose prior to discharge which then remained relatively stable). Complications were rare. They do not comment on 1) quality of life or 2) ambulation. The notable aspects of this study was that they really tried to include only patients who had not done well with multiple attempts at systemic opioid use as well as the fact that they included incredibly sick patients. Along those lines mean hospital stay was 12 days, with an average of 7 after IT pump implantation - without measuring quality of life it's unclear to me whether the hospital stay was worth it for these patients given their short prognoses....

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QJM has an article about communication with hospitalized patients who are likely to die. It attempts to outline, in a practical manner, a step-wise protocol in communicating with patients/families when there is a high likelihood life-prolonging measures may fail. Its major theme is one of proposing a 'trial' of life-prolonging therapy (as well as an option of comfort-only care) from the outset, and then walks the clinician through communication steps to take if the trial doesn't work. A good one for the teaching file.

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Journal of Pain has a trial of dronabinol added to opioids for chronic pain. It involved 30 patients receiving opioids for chronic pain who still had pain at least 4/10 - they blindly received placebo, 10mg, or 20mg of dronabinol as a single AM dose and had pain/side effects measured hourly for 8 hours. Each patient blindly received each treatment once on different days. Then the patients were invited to continue in an open-label fashion. Dronabinol appeared to be mildly-moderately effective in both phases of the study, however clearly long-term, controlled/blinded data are needed. This is one of a growing number of studies, recently, re-looking at cannabinoids for pain.

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Lancet has a review about bereavement & health outcomes. It's a comprehensive, narrative review of the research looking into this (mortality in bereaved spouses, etc.) - another good one for the teaching file.

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BMJ has its annual holiday 'funny' issue out, which usually contains light-hearted & joke research and opinion pieces. Highlights from this one:

a) From an article on medical slang: "Mac Tilt": "The lateral movement of the head to an angle of 45° to the vertical by a palliative care nurse specialist. It is intended to convey sympathy and understanding. (Mac from Macmillan nurse—a specialist palliative care nurse—and tilt.)"

b) A thoughtful piece on PowerPoint: "The background colour scheme and logo for your slides should be selected for maximum emetogenic potential."

c) A case series on 'death delusions' (a fixed belief that one is dead) as a side effect of valacyclovir.

d) A profile of different physician communication styles when they are talking about death/dying with patients (e.g. the grim reaper, the evangelist, the deflector, etc.). They take pot shots at cardiologists: "Cardiovascular specialists segregate most often as precisionists and are seen touting statistics gleaned from clinical trials that bear fortuitous acronyms such as HOPE, CARE, CURE, VALIANT, COURAGE, and MIRACLE."

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An article last week in the Chicago Tribune introduced me to something brand new in my experience: DNR orders for kids in schools. So where have I been? Like most people who don’t work in a school, don’t work in pediatrics, and have healthy able-bodied kids, I hadn’t given it much thought. Of course, it makes eminent sense to have this conversation. All children, by federal law, are permitted to attend school and must receive reasonable accommodation given their condition. This includes those with life-limiting illnesses and those with severe disabilities. Kids in both categories live a lot longer these days because of advancing technology and medical knowledge. This has apparently been a hot topic in schools since at least the early 1990’s, although, according to a recent study in the Journal of School Nursing, few school districts have official policies and procedures. In some states, a DNR order is not recognized outside of a health care institution, much less in a school. In others, “out-of-hospital DNR” forms are provided by the state (see sample from North Carolina at right).

The National Education Association published a Policy on "Do Not Resuscitate" Orders in 1994. The American Academy of Pediatrics published a supportive Policy in 2000. Both acknowledge the complexity of the issues and the need for state laws and local school systems to establish appropriate policies.

The issues:

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I'm probably not going to be able to blog anything seriously this week, so will probably do a couple of quickie posts about articles from my pile.

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Multiple notable articles from the most recent Archives of Internal Medicine:

a)
First is an observational study on symptom prevalence in patients with COPD and CHF. 133 patients (community dwelling, mean age ~73 years, a little over a third had at least one limitations in ADL's) underwent quarterly symptom interviews for 2 years. ~40% of the cohort died during the study. Dyspnea, pain, discomfort, fatigue, appetite problems, depression, and anxiety were all quite common, and many increased in either prevalence or severity across time. Notably, pain was quite common in the CHF patients and increased in severity over time (% reporting moderate to severe pain increased from 20% to 42% over the study). More indication (not that it was really needed) that pain is by no means a problem of advanced cancer....

b)
Next is a follow up to this landmark study about the 'chronically critically ill' (more or less patients needing long term ventilation after a critical illness), looking at the information families/patients received about it, prognosis, etc. This study involves data collected at the time of the first study, and looked at the information families (and the few patients who were communicative) received about their care. They looked to see if these domains were discussed:

1) nature of the patient's illness and treatments; (2) prognosis for outcomes including ventilator independence, function, and quality of life; (3) impact of treatment on patient experience, including symptom burden; (4) potential complications of treatment; (5) expected care needs after hospitalization; and (6) alternatives to continuation of treatment.

The results are, simply put, dismal/disheartening, and suggest that 1) prognosis was frequently not discussed (this was a cohort of patients with a >50% 6 month mortality) and 2) alternatives to the current care plan, something which is technically necessary for informed consent, were rarely discussed. 83% of families reported not hearing alternatives to continued mechanical ventilation; 93% weren't given a survival estimate; 80% reported hearing no information about expected functional status after hospitalization. It goes on like this....

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There's also a paper about the development of a prognostic index for patients with peripheral vascular disease. It's mostly useful though for predicting mortality on a long-term (5-10 year) basis.

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Finally there's an important paper looking at the natural history of QT prolongation with methadone. It's taken from a randomized trial comparing methadone (patients received 60-100mg daily) with levomethadyl or buprenorphine for patients with opioid addiction; patients in this trial had their QT interval monitored with EKGs. Depending on how they defined 'significant' QT prolongation (they looked at it in several ways), methadone signficantly increased the QT in ~12-30% of the patients receiving it over the course of many weeks. (Buprenorphine, not surprisingly, didn't increase the QT). 12% of the methadone patients, at some point in the trial, had a QTc greater than 500 msec. Notably, the QT interval continued to increase over time (4, 8 weeks), even for those patients on steady methadone doses, suggesting that an EKG done when patients should be at 'steady state' (which, with methadone, can easily be a week) is not necessarily reassuring that the QT isn't going to widen further.

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The most recent Annals of Internal Medicine has an article about some ethical concerns with the Uniform Anatomical Gift Act (this is model legislation which states are being encouraged to adopt to improve rates of organ donation - several states have already adopted it). The authors define the concerns with a terrifying case, apparently real:

"A man has a stroke and has irreversible brain injury, but he is not brain dead. The family want to honor his wishes to "not be kept alive on machines if there is no hope," something he put into an advance directive. However, he designated himself as a donor on his driver's license. The physician wants to discuss what to do next, and how to prioritize care, but he is stopped by a new state law, modeled after the new Uniform Anatomical Gift Act (2006). The law states that, because the patient is an organ donor, his end-of-life care must be managed in a way to promote donation, even if it compromises comforting care. His do-not-resuscitate order is reversed, and he is resuscitated when he becomes hypotensive and loses pulse. Mechanical ventilation, blood sampling, and other critical care are continued. The physician cannot discuss options, because according to the Organ Procurement Organization, the family does not have the option not to donate. Therefore, any decisions regarding terminating critical care are vetoed per statute. Twelve hours later, the patient is taken to the operating room, life-sustaining treatments are removed, he dies, and his organs are procured. This is a true story. We believe it represents an unintended consequence of new language incorporated into the Uniform Anatomical Gift Act (2006)."

There has been a revision to the language noting that such actions should not conflict with 'appropriate end of life care,' but many state statutes don't reflect this. Yikes.

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There's an interview with me that's currently on ReachMD, an XM satellite radio channel for health professionals (channel 157). It's mostly about Pallimed, with a little bit about HPM in general. I can't bring myself to listen to it, although I don't recall saying anything too humiliating.

Podcast of the interview, and broadcast schedule, is here.

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Two from the latest JCO.

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Journal of Clinical Oncology has a fascinating study on prognostic disclosure and hope. The context of this study is best summarized by its opening paragraph:

"Physicians and patients alike believe that the best medical communication allows for hope, no matter how difficult the situation. But this ideal presents challenges for physicians, who may view disclosure of a poor prognosis and provision of hope as conflicting obligations. In service of hope, some physicians therefore choose to limit or carefully tailor the information they give to patients. For example, physicians may give no prognostic information and avoid such a discussion when asked directly, may give overly optimistic information, or may collude in hopes of a cure by focusing on treatment options."

The study involved ~200 parents (mostly female, college-educated, and overwhelmingly white) of children with cancer at Dana Farber; the median age of the patients was 6.6 years, and the survey was done a median of 100 days after diagnosis. Most patients had good chances of survival (the physicians rated 75% of the patients as having a more than 50% chance of survival) - although thankfully the authors did some analyses of just those parents with children with low chances of survival. They asked the parents a variety of questions about how much prognostic information they received (they used a point system for different elements of a prognostic disclosure - including any discussion of prognosis, who brought it up, if likelihood of cure was shared, if quantitative data was shared, if written info was shared, if the parents thought they received enough info or not, etc.); the major outcome they were trying to measure was the impact of the completeness/thoroughness of the prognostic discussion on parents' reports of hopefulness (how hopeful the physicians' communication made them feel).

The major finding: most parents reported feeling happy with the amount of info about prognosis they received, and the extent of prognostic disclosure was strongly correlated with hopefulness.

The secondary findings, which are of more interest to me and probably most readers of this blog: having a poor prognosis (likelihood of cure less than 25%) was associated with lower reported communication related hopefulness. However, for the parents of those children, degree/thoroughness of the prognostic disclosure was strongly associated with communication related hope. So the not surprising finding that the parents with the least to hope for found their communication to be less hope inspiring is tempered by the evidence that talking about prognosis more thoroughly/deeply built hope. I regret writing that convoluted sentence, but don't have the wherewithal right now to fix it.

The major limitations to the secondary findings is that it involved a small number of parents (11%), which makes you wonder how reproducible they are. The major limitation to the study in general is that it involves parental recall about the content of past conversations, and one can imagine the recall being heavily shaded by the parents relationship with the oncologist, etc. Docs who are 'good communicators' may be remembered as being more thorough and more hope-inspiring - i.e. what's being measured here is parents' general perceptions the oncologists' warmth, trustworthiness, etc. The ideal way of doing this of course would be to prospectively record physician-patient(parent) interactions and then measure hope, etc. That'd be a bugger of research project, for obvious reasons, and may never happen....

Research issues aside, any study which supports the concept that telling patients the thorough truth is welcome.

As a side note about the language used in this study, patients who had a 25-49% chance of survival were classified as being 'somewhat likely' to survive, although it seems that 'somewhat unlikely' is more accurate. The language of hope is everywhere....

Mack, J.W., Wolfe, J., Cook, E.F., Grier, H.E., Cleary, P.D., Weeks, J.C. (2007). Hope and Prognostic Disclosure. Journal of Clinical Oncology, 25(35), 5636-5642. DOI: 10.1200/JCO.2007.12.6110

[Why the full reference & DOI? This is part of the BPR3 project that we are joining - which won't change the blog in any way other than a few icons & extra links like above. The full-reference is part of the BPR3 standards, as well contains code which will eventually allow the post to be aggregated and searched as part of a BPR3 database.]

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The same issue also has a study on advance directives and outcomes of bone marrow transplantation. The context of this study, per the introduction:

"Clinicians often have difficulty communicating with their patients about ACP, because it explicitly raises the possibility of death. They may fear that ACP discussions could heighten the patient's anxiety or, worse, could have an adverse effect on the outcome. In the setting of HSCT, discussions about ACP may be especially upsetting to patients, because they are about to undergo a procedure with very high risks of morbidity and mortality. Patients may fear that physicians bring up ACP because they expect the patient will not survive. This belief stems from findings among hemodialysis patients who viewed ACP as a way to prepare for death and dying and not just as a preparation for possibly being incapacitated in the future. Hence, we conducted this retrospective analysis to determine whether patients engage in ACP in the HSCT setting and to evaluate whether the presence of advance directives was associated with adverse clinical outcomes."

I appreciate that the authors freely admitted this was being driven by clinician fear (again, per the first article, of hurting patients by talking with them honestly). The results were, simply, that having done advance care planning was associated with improved survival in both uni- & multivariate analyses. The magnitude of increased risk of death associated with not having done ACP was greater than that associated with advanced age (patients in the highest age tertile).

So, yes, talking with your patients about the future doesn't kill them. Glib quips aside, 'ACP' in this study was defined as having either a living will, a health care power of attorney, or 'life support instruction,' 3 things which don't necessitate a conversation with a physician about one's future, but I'll still stick with the above speaking points!

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Journal of the American Geriatrics Society has a longitudinal study about decision making preferences in the elderly. It looked at 147 patients with advanced illnesses (metastatic cancer, ALS, or heart failure with a likely prognosis of less than 2 years) who were prospectively followed for up to two years. They were asked a series of questions about how they wanted their physicians to make decisions for them if incapacitated (on a continuum from completely based on what they think the patient wants to completely based on what the physician thinks is best) as well as how they would want their loved ones to make decisions for them if they were incapacitated (on a continuum from the loved ones making decisions based on what they thought the patient would want to based simply on what the loved ones think is best for the patient...they were trying to capture how much patients would endorse a 'substituted judgment' ideal as opposed to a 'best interests' ideal). It is similar in some ways to this paper I recently blogged about - both papers use the same basic scale to measure decision making preferences (that post also explains what the 'blogging on peer reviewed research' icon is all about for those of you who missed it).

At baseline there was a wide spread of preferences, with most answers in the middle, however they were definitely skewed towards relying more on substituted judgment (and not 'best interests') and more passivity/reliance on physicians in regards to how they prefer to make decisions. The preferences regarding loved ones pretty much stayed stable over time, and not surprisingly older patients (over 80) endorsed a 'best interests' standard more than younger ones. Preferences for physician involvement for decision making shifted, slightly but significantly, towards more substituted judgment over time, particularly in college-educated patients.

Several points here: the findings broadly support the idea that patient's decision-making styles/preferences are stable overtime, suggesting that advance care planning - talking with people as to how they want decisions made when they are relatively healthy - is a reasonable endeavor. This is also further research that the ideal of substituted judgment may not even be much of an ideal (in the sense of being what we should be striving towards). Patients themselves don't endorse it, instead endorsing (I'm speaking broadly here) a mixture of patient preference and physician recommendation of what's in a patient's 'best interests.' This is of course how most patients, most of the time, make decisions anyway, and so none of this is surprising. There are very few patients, after all, who wouldn't take into account their physicians' recommendations about the best thing to do: this is what physicians do and if all patients needed to do was to look their problems up on WebMD and 'decide for themselves' physicians wouldn't be needed anyway.

Two questions raised by this study: what is going on behind those shifts towards substituted judgment over time by many of the patients in this study? What drives that - could this be a marker of something deeper in the way patients conceive their disease, their story, and their role in it, in some way that changes over time? The other question I had is what did the patients themselves think about this attempt at distinguishing between what people think is in their 'best interests' vs. what people think they, themselves, would choose? Wouldn't they choose what was in their best interests? While clearly patients went along with the research and answered these questions (and most of them wisely answered somewhere in the middle), did they think that these distinctions, which have historically been important from a medical-ethical-legal perspective, were in fact coherent, meaningful distinctions?

Sulmasy, D.P., Hughes, M.T., Thompson, R.E., Astrow, A.B., Terry, P.B., Kub, J., Nolan, M.T. (2007). How Would Terminally Ill Patients Have Others Make Decisions for Them in the Event of Decisional Incapacity? A Longitudinal Study. Journal of the American Geriatrics Society DOI: 10.1111/j.1532-5415.2007.01473.x

2)
Journal of Clinical Oncology has an article about symptom prevalence in lung cancer in relation to time of death. The study involved prospectively gathered symptom data from 400 Swedish patients (mean age 66 years) starting shortly after they were diagnosed with inoperable lung cancer. Data were gathered at multiple, pre-specified points up to 1 year after diagnosis. Symptom prevalence, intensity, and distress were all measured. Most patients died during that year, and the researchers analyzed their symptoms as a function of time before death (comparing those in the last month of life; last 1-2 months of life; 2-3 months; etc.).

Reflecting the number of data points they gathered, this article has a couple of the most astonishingly complicated tables I have ever seen in a clinical research article: if Edward Tufte was dead he'd be rolling in his grave. They are bad enough to be described as non-"human-readable." Thankfully, there is text to summarize them: breathing problems, pain, and fatigue were consistently rated as the most distressing symptoms, and most symptoms, notably pain and dyspnea, worsened as death approached. Half of the patients approached to participate in the study declined, and a good percent of them declined because they were too fatigued or ill-feeling; one wonders how much worse the findings would have been if these patients had participated.

The fact that symptoms and function worsen as one dies is not surprising or new (although rarely presented in such glorious detail). The more interesting finding is that symptom distress was less predicted by symptom intensity earlier on in the disease (later one distress and intensity closely correlated): pain and dyspnea were relatively mild early on, but still rated as among the most distressing. The authors speculate that anxiety/worry early on about future severe symptoms (of pain and dyspnea) may actually make low-grade pain and dyspnea that much distressing even early in the course of inoperable lung cancer. It's the worry about the symptoms, the realization that they will inevitably get worse, which make them so distressing early on. An interesting hypothesis raised by these data; one hopes they look into it further (it may be amenable to intervention via simple reassurance).

Tishelman, C., Petersson, L., Degner, L.F., Sprangers, M.A. (2007). Symptom Prevalence, Intensity, and Distress in Patients With Inoperable Lung Cancer in Relation to Time of Death. Journal of Clinical Oncology, 25(34), 5381-5389. DOI: 10.1200/JCO.2006.08.7874

3)
BMJ has a news article about the Royal College of Physicians audit on death & dying in UK hospitals.

"But hospitals were less good at delivering bad news. Only 57% of the patients had been told that they did not have long to live, and only 45% recognised the nature of their condition. However, over 80% of carers were aware of the diagnosis, indicating that staff find it easier to discuss the issue of dying with relatives and friends."

Or the patients, themselves, were too sick to even receive the news? This is not discussed in the news item. I'd be fascinated to see a similar audit done in the US, but doubt that will happen since we don't have an integrated health system.

4)
Thanks, Christian, for setting up the Pallimed donation celebration. We are doing this for you Pallimed readers who are also Pallimed appreciators and want to show it in this way. Thank you. And yes there's some schwag that Christian cooked up, as well the quite useful Hospice & Palliative Care Formulary (US version) that the editors at Palliativedrugs donated.

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I just came home from the 4th Cachexia conference in St. Petersburg, FL. This conference originated in Berlin, and this is the first time it has been hosted in the United States. The primary focus is basic science but the conference had a clinical track, which from prior participants sounds like it is becoming more significant. The speakers and attendees are mostly from Germany, Italy, Japan, and Australia, as well as the US, so this conference surely has an international flair. One great comment I heard from a German physician, after I introduced myself as a palliative care physician was, "Oh. You are finally doing that here in America. I didn't think that was something that had really caught on over hear yet." I heard something similar from a British scientist as well.

While we have been rather pessimistic about treatment of cachexia here at Pallimed, the conference speakers and attendees were are very hopeful about the future of cachexia research and treatment opportunities. It was enlightening to speak to scientists working with animal models of cachexia to give them some insight in how clinicians see (or really don't see) cachexia as part of the disease process in humans.

Approximately 300 attendees were present for the first plenary session which featured some of the leaders in cachexia research: John Morley (St. Louis, USA), Bill Evans (Little Rock, USA), Stefan Anker (Berlin, GER) and Giovanni Mantovani (Cagliari, ITA). Most of the initial lectures focused on the dilemma of definitions and differentiating cachexia from anorexia, sarcopenia, starvation. But despite that attempt at clarification there was still some overlapping definitions among all the speakers later in the conference.

Apparently, only recently has there been some effort to have a consensus statement on defining cachexia. There was even a push at one time to rename cachexia as 'wasting disease syndrome' to be more appealing to Americans. Thankfully that did not win out, since cachexia is a perfectly workable word. It even has an 'x' in it like most popular brand medications, so you think that would help.

While no major breakthroughs in clinical treatment were presented, the conference did help me to really understand how really complex a problem cachexia is, and how knowing this may assist may explanation to families, patients, and medical staff, that it is not as simple as just improving the calorie balance. I am hopeful to see more talks at upcoming palliative care meetings on cachexia. Christine Ritchie and Elizabeth Kvale from University of Alabama Birmingham Center for Palliative Care were also at the meeting to get ideas for their cachexia clinic (a part of their palliative care clinic). They may be good contacts if any readers are looking at working this model into your program or even joining them at UAB.Don't forget about the Pallimed Fund Raiser for donorschoose.org, and the contest for HPCF-USA and the Pallimed coffee mugs.

Maurice Bernstein, MD at the Bioethics Discussion Blog brings up the common medical shortcut of referring to patients by their age/sex/room/diagnosis instead of their name and who they are as a person. For suggestions on how to help teach humanism in medicine check out his blog.

A report about deaths increasing from methadone use was released last week. We may feature this issue in an upcoming post.

Blogger Ed Leap with a interesting post on CPR. Could continuing CPR serve for purposes more than just prolonging life?

Photo of the Sunshine Skyway Bridge over Tampa Bay courtesy of Flickr user .Zickie.

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Dear Pallimed readers,

Thank you so much for joining us for a great year of palliative care blogging. We are very appreciative of your readership and comments. The three of us are committed to continuing Pallimed as a timely and interactive source of palliative care information and commentary. We are also committed to keeping Pallimed ad-free, and we plan on never making this a subscription only service. But we would like to show that Pallimed readers a group can make a difference, so we will have our first annual Pallimed Fund-Raiser, just in time for the season of giving and tax-deductions. This year we will work with Donors Choose to help fund school projects around the United States.

• 1 copy of the Hospice and Palliative Care Formulary USA donated from the editors of palliativedrugs.com (there will be an upcoming review of this book here, and it makes a great holiday gift to your palliative care unit/hospice house!)
• 3 Pallimed coffee mugs with the Pallimed logo!
  

State raffle rules prevent us to tying it to donations, but if you can enter for free by:

1) entering a comment on this post
OR
2) you are already signed up for email posts (doesn't work for RSS to get specific info)
OR
3) you email me at ctsinclair (@t) gmail (d0t) com with "Contest" in the subject line

Winners will be announced in the first week of 2008.

Please show your support of all the ad-free helpful information from Pallimed by giving to the school project of your choice. Together we can make an impact.