Friday, November 28, 2008
Journal of Clinical Oncology has a paper looking at what oncologists tell their terminally ill patients about their expected deaths. The study looks at oncologists' self-described practices, and is based on a survey sent to oncologists (members of the American Society of Clinical Oncology) practicing in the US (sent to ~1200 docs, ~700 responses, 64% response rate which is about as good as it gets for research of this type). They collected demographic data, training information, as well as quantitative and qualitative responses to questions regarding the oncologists' habitual practices for their patients expected to die 'within 6 - 12 months.'
Basically, oncologists rated themselves as good communicators (90% feeling patients always/usually satisfied with their communication), and 98% describe telling their terminally ill patients that they will die from their disease. They were more split about time disclosures: nearly half say that they give a time disclosure (prognosis) as a rule, the other half only do it if the patient says they want to know when the oncologist asks them (33%) or only if the patient initiates a request for the information (16%). 3 respondents said they don't talk time with patients no matter what (I'd like to meet these people, as well as the couple percent who don't tell their patients if their cancer is incurable - one wonders what they tell them about their intentions for giving chemotherapy and how they can give truly informed consent for such treatment if the patients don't even understand its expected outcome). My curiosity about these outliers aside, this represents a pretty dramatic generational shift in the last few decades in the US towards disclosure of prognosis aside.
What was most interesting to me was the results of a multivariate analysis looking at predictors of physician self-reported willingness to disclose prognosis. Both advancing age and being Jewish were associated with a lower likelihood of disclosing prognosis to patients. Seeing lots of patients and reporting that you'd want to know your own prognosis were both associated with being more likely to disclose prognosis. While one can argue whether or not these individual 'risk factors' are relevant, the major point here is that as a cancer patient, what you are told about what to expect may in fact hinge not on what you want to know, or what you 'need to know' (we can debate what that actually is), but on simply who your oncologist is, and, for instance, what they would want to know if they were in your shoes. This is not good news.
The authors also point out the elephant in the corner here: given the relatively 'strong' showing for physician disclosure of prognosis, how is it that numerous studies have shown a substantial minority of cancer patients don't seem to understand the most basic/essential information about their illnesses (e.g. whether the chemotherapy is being given with the intention/hope of cure or for non-curative so-called-palliative reasons).
Limited data suggest that most advanced cancer patients desire at least some information about their prognoses, and our data describe oncologists as disclosing to the majority of their terminally ill patients that they will die. This would seem to contradict the wealth of data that describe many advanced cancer patients as not understanding their prognoses. This apparent contradiction may be better understood by recognizing the potential differences between what physicians believeIndeed. I've been contemplating this for a while in my own work, particularly with 'young oncologists' (fellows, etc.) struggling with difficult communication. Most of them are very comfortable with the idea that patients have a right to know their prognosis, should know it, etc., but I constantly see situations in which patients for whatever reason have not understood what the oncologist thought s/he was communicating. This 'skill,' - of gauging/checking your patients' understanding of things (particularly over time, after that initial first difficult disclosure, when all you've been talking about the last few months is the next scan or next treatment), seems like an important one, and one that is not talked about too often.
they are disclosing and how patients actually understand this information.
C. K. Daugherty, F. J. Hlubocky (2008). What Are Terminally Ill Cancer Patients Told About Their Expected Deaths? A Study of Cancer Physicians' Self-Reports of Prognosis Disclosure Journal of Clinical Oncology DOI: 10.1200/JCO.2008.17.2221
Friday, November 28, 2008 by Drew Rosielle MD ·
Neurology has a paper looking at predictors of poor prognosis in patients who receive 'induced mild hypothermia' after cardiac arrests. Called 'the hypothermia protocol' at my institution - this is a procedure which involves cooling patients' core temperature (to ~34 degrees C) after a cardiac arrest to minimize anoxic brain damage. It's been shown to lead to modest improvements in mortality and neurologic recovery. While there are some pretty good criteria to predict very poor neurologic recovery after an anoxic brain injury, this study (a retrospective case series of 37 consecutive patients from a single institution) tries to answer the question of if this has changed after the advent of hypothermia therapy. The patients all were comatose after arrests, survived at least 3 days, and were examined on days 3-6 post arrest (hypothermia is continued only for 12-24 hours so its effects had worn off by the time these patients were examined). Their main outcome was documentation of 'awareness' before hospital discharge (following simple commands).
They found that no patients with unreactive pupils, absent corneal reflexes, or who had myoclonic status epilepticus on days 3-6 regained interactivity. Two of 14 patients who had no motor responses better than extensor posturing on day 3 recovered interactivity before discharge - none of the rest did.
Some cautions about what was not measured: long-term recovery or even how long these people stayed in the hospital (ie were most of the patients with fixed pupils discharged to hospice/palliative units in just a few days, etc.?). That said, this is preliminary (one institution, small N, vague follow-up, no standardized assessment although most of these things are done routinely anyway) but suggestive data that many of the 'standard' predictors of dismal neurologic outcomes after ABIs are still relevent for people who receive hypothermia treatment: absent pupillary and corneal reflexes on day 3, myoclonus status epilepticus. No-better-than-extensor posturing on day 3 is still dismal but perhaps not so much.
by Drew Rosielle MD ·
Archives of General Psychiatry has a paper suggesting PTSD is a strong marker of mortality in patients with internal cardioverter-defibrillators. The data come from a prospective German cohort study of ~150 patients with ICDs in which patients were screened for PTSD at baseline. The authors imply, but don't actually confirm in their study, that many/most of the patients with PTSD had it secondary to an acute cardiac event (such as a cardiac arrest or myocardial infarcation - part of the inclusion criteria for this study is that all patients had to have a rapid onset of their cardiac condition, ie a traumatic event, to qualify). 38 patients had severe PTSD symptoms at baseline, and had much worse outcomes (survival) even after controlling for multiple confounders including ejection fraction, age, number of ICD shocks, prior arrest, depression, anxiety, etc.: mortality was 55/1000 patient years for patients without PTSD and 88/1000 py for those with PTSD. (Overall mortality was 30% over an average of 5 years of follow-up.) It's a small study, and more hypothesis-generating than conclusive, but it's further suggestive evidence of just how significant psychiatric symptoms and morbidity can be for survival, particularly, perhaps, in cardiac diseases.
Thanks to Dr. Bob Arnold, again, for alerting me to this.
by Drew Rosielle MD ·
Wednesday, November 26, 2008
In consideration of the many family dinners that will occur over the next few days of the Thanksgiving holiday, Pallimed is hosting (along with several other medical bloggers) a guest post from Engage with Grace and the One Slide Project.
Have a safe and meaningful Thanksgiving!
We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it. This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking. Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can…at a presentation, at dinner, at their book club. Just One Slide, just five questions. Lets start a global discussion that, until now, most of us haven’t had.Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started. Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them. Just One Slide, just one goal. Think of the enormous difference we can make together.
(To learn more please go to www.engagewithgrace.org. This post was
written by Alexandra Drane and the Engage With Grace team)
Wednesday, November 26, 2008 by Christian Sinclair ·
Tuesday, November 25, 2008
This post is the follow-up to Part1 posted on Sunday. The first four healing skills for medical practice were reviewed previously. In that post, the skills were discussed in respect to their innate practice of good hospice & palliative medicine. Here are all eight for a quick review:
- Do The Little Things
- Take Time and Listen
- Be Open
- Find Something to Like, to Love
- Remove Barriers
- Let the Patient Explain
- Share Authority
- Be Committed and Trustworthy
I completely agree with the physical barriers that communicate power and authority, such as standing over a patient to examine them. I feel most comfortable and the least invasive in my physical exam when I am able to sit down next to a patient (not on their bed, next to it). In this way I can ask questions at the same eye level, and reach across the patient instead of reaching down to them when performing the physical exam.
Try this experiential test on yourself. Sit in a chair in a somewhat reclining position. Ask a staff member, family member or friend to lean over you as if they were to examine you. You will quickly see it does not feel very safe nor comfortable to be in the 'patient' position. What other barriers do you see removed as part of everyday palliative care?
Let the Patient Explain
This expounds upon the earlier take time and listen, and in the article the authors do not really explain well the difference between the two. Maybe eight was a better number for a list, instead of seven? See previous post.
This goes for both the patient-physician relationship and the physician-staff relationship. The article focuses on the patient-physician aspect which palliative care reinforces with goal-directed discussions and treating the whole patient, and the concept of total pain.
In sharing authority with staff, the palliative care physician hold a unique spot in medicine. Palliative care is built on the foundation of a mutual respect for the expertise of all disciplines which is reinforced by a horizontal leadership structure, rather than the classic vertical medical hierarchy with the physician on the top. It feels natural for most palliative care docs to call upon the various disciplines for their input, expertise and direction when implementing a plan for a patient-family unit.
Be Committed and Trustworthy
Initiating end of life discussions within five minutes of meeting a patient demands a rapid building of trust. This isn't something palliative docs or nurses do every day, but it happens often enough and you never know if that is where you may be going when you first meet a patient or family, so one needs to do all of the above things to demonstrate trustworthiness.
This is a great quick teaching article full of quotes from the interviews that should prompt discussions with learners and staff. Please add any of your own healing skills in the comments.
Tuesday, November 25, 2008 by Christian Sinclair ·
Sunday, November 23, 2008
Churchill and Schenck from the Vanderbilt Center for Biomedical Ethics and Society published a paper in Annals of Internal Medicine that defines 8 themes for potential healing skills for medical practioners. As I read the list I immediately recognized some of these as basic tenets of good palliative medicine practice, which makes sense since a fair proportion of teaching in our field deals with self-care and avoiding burnout. But then I read the paper and realized it wasn't only about healing the practioner but rather healing the patient. The funny thing is it really works both ways. I guess my take on it tells you where my head was at when I read it. So here is the list:
- Do The Little Things
- Take Time and Listen
- Be Open
- Find Something to Like, to Love
- Remove Barriers
- Let the Patient Explain
- Share Authority
- Be Committed and Trustworthy
Do the Little Things
For me this has a lot to do with respect, trying a little harder to say a complicated name correctly, giving mouth care if you see a dry mouth instead of only considering it a finding on physical exam, finding a magazine on historical aircraft and giving it to the aviation buff, sitting down to talk to the patient. What are your 'little things' to do for patients?
Take Time and Listen
Do I need to tell you why this is second nature for palliative medicine? Being able to spend time with patients and families and not feeling that you have to drive the conversation is healing in both ways because it feels much more like a normal human relationship instead of just business. And sometimes that means a 90 minute family meeting.
This one might be a little more difficult for our field since being too open may be a recipe for burnout as we have talked about before on Pallimed. I think compared to other specialties, palliativists has more openness and vulnerability. So I don't necessarily advise trying to be more open; best to ask your colleagues who know you where your balance needs to lie.
Find Something to Like, to Love
Should you learn interviewing techniques to appear compassionate or should you just be interested in your patient. Finding things to like or to love about our patients and families comes naturally from the 2nd and 3rd topics fairly naturally. If you take time and listen, and are a little open to understanding a patient or family experience it is pretty easy to like something about them. Some may be harder or easier of course, but I think this is a result from the above.
Please add your own views on how these skills play into your practice. The second 4 are posted here.
HT: Joshua Schwimmer, MD - The Efficient MD
Larry R. Churchill, David Schenck (2008). Healing Skills for Medical Practice Annals of Internal Medicine, 149 (10), 720-724
Sunday, November 23, 2008 by Christian Sinclair ·
The Journal of Palliative Medicine is open access for the month of November and December 2008 in celebration of National Hospice and Palliative Care Month. Hooray! All 11 volumes in their full text pdf glory.
I love open access. It is very good for blogging and hot linking to the articles. I wish all journals were built on an open access model to spread the information. But my rant about the lack of open access in medical journals will be saved for another day when I can make more cogent arguments.
It would be great if some of our readers want to comb through some of the early journal articles and see if they can find any gems from the peri-2000 era. In 1998, the Journal of Palliative Medicine was a quarterly publication. I did not know that!
Other facts about JPM I learned from looking at the first issue:
- Paul Rousseau has been reviewing 'Recent Literature' since the journal began. (Drew did his column inspire Pallimed at all?)
- Starting a new journal can be tough, but it doesn't hurt to have some of the following people writing the first articles: Tulsky, Billings, Arnold, Christakis, Fine, Ferrell, Von Gunten and of course the editor Weissman. I have always wondered what they were up to now...has anyone heard from these characters?
- Defining Palliative Care has been an issue for our field from the very beginning.
by Christian Sinclair ·
The reviewing for the AAHPM case conferences (3rd call) is well under way. We had over 60 submissions this year for 9 slots. Pallimed readers who are planning on attending the AAHPM/HPNA Annual Assembly in Austin, TX in March 2009, are encouraged to sign up for the case conferences. They are a great chance to see focused short presentations from some of our field's newer professionals. I have really enjoyed the presentations and some cases I thought rivaled any other presentation at the conference.
The cases will be announced on Monday December 1st. The person who submitted the case will be notified regarding selection or rejection by email. After a few days we will post the names and titles of the cases here and on the PIT-SIG blog.
Thanks to all who submitted and those who keep asking me.
FYI the cases are blinded to any identifying info re: the submitter, so no favoritism allowed.
by Christian Sinclair ·
Wednesday, November 19, 2008
Image via WikipediaPalliative care has not made inroads with American Neonatal Intensive Care Units (NICU) for many reasons: the increased use of technology in the NICU (more complex and specialized then an adult ICU), the usually 'closed' style of the NICU potentially excluding other specialists, the sensitivity issues with the parents/family when dealing with children, and the tremendous lack of pediatric palliative care specialists, let alone neonatal palliative care specialists.
(Is there anyone out there claiming to be a neonatal palliative care specialist? If so please let me know in the comments. You should be talking at every national palliative care meeting and pediatric meeting.)
An article in the November 2008 Pediatrics compares different NICU admission strategies for extremely preterm births (25 weeks and lower). This study is first of all important because it highlights the poor survival outcomes for this population and therefore the potential need for improved palliative care support in the NICU. Approximately 16% of births at or before 25 weeks survive hospitalization. Stratified survival rates were approximately 2% at 23 weeks, 14% at 24 weeks, and 29% at 25 weeks. There was no clarification about deaths that may have occurred immediately after discharge, as may happen in peri-natal hospice situations.
Mortality rates for extreme preterm births are not the key finding here and the researchers were looking at the differences in delivery room strategies in France versus the United Kingdom. In the introduction they propose three observed strategies:
"Wait until certain" (United States) - Admit to NICU until death is certain
"Statistical prognostic" (Sweden/France) - Withhold NICU care for preterm infants with probable poor outcomes
"Individual" (United Kingdom) - Admit to NICU and reassess treatment goals based on prognostic information
The percentage of stillbirths and deaths while in the delivery room was higher in France (72% - EPIPAGE study) compared tho the UK (56% - EPICure). And conversely, deaths in the NICU were statistically higher in the UK (45%) versus France (29%). The point of this is not that delivery rooms are awful in France but their NICU's are much better, or vice versa for the UK. It may have to do more with medical management approach and decision making since when looking at all survivors the studies were not statistically different, 16.5% for the UK, 15.8% for France.
And the difference of the mortality rate in the NICU is not wholly explained by change of goals from curative to palliative and the resulting withholding and/or withdrawing of life-sustaining treatments. In the UK NICU study 55% of infants died after discontinuation of intensive care compared to a non-statistically significant 47% in the French study.
It would be nice to see a similar study in adult ICU's or even oncology practices looking at various strategies and regional variations (similar to the Dartmouth Atlas?) but with the breadth of data these NICU studies have. The basic conclusions drawn from this comparison is:
"Wait until certain" - lower mortality rate, higher rate of impairment, high resource utilzation
"Statistical prognostic" - higher mortality rate, lower rate of impairment, low resource utilization
"Individual" - higher mortality rate, lower rate of impairment, medium resource utilization
The implication for policy makers and society is to determine which of these variables need to change to which degree to make one strategy more desired over another.
F. Bodeau-Livinec, N. Marlow, P.-Y. Ancel, J. J. Kurinczuk, K. Costeloe, M. Kaminski (2008). Impact of Intensive Care Practices on Short-Term and Long-term Outcomes for Extremely Preterm Infants: Comparison Between the British Isles and France PEDIATRICS, 122 (5) DOI: 10.1542/peds.2007-2976
One side note:
The discussion refers to an article demonstrating wide regional variations in end-of-life practices by neonatologists in Europe. This study found 73% of French neonatologists had administered medicines to deliberately hasten death at least once compared to 4% of British neonatologists. And British docs were more likely to have conversations about withholding or withdrawing curative/life-support therapies compared to French docs (91% to 73%)
Second side note:
Does this table look like there are some miscalculations here? It seems to be all those numbers on overall cognition should not be the same. Click for higher res pic.
Wednesday, November 19, 2008 by Christian Sinclair ·
Here are a few more blogs (
four, five , six, seven!)that I have found recently that may be of interest to our growing community. Go visit them, read a little. Leave a comment if you have a few seconds, since it is kind of like a tip to the blogger. A little appreciation can go a long way to inspiring bloggers to keep writing. At this rate we might have enough Palliative Medicine blogs to start a monthly grand rounds? Anyone else up for that?
The Center for Practical Bioethics has a weekly blog similar to Maurice Bernstein's blog that covers a wide range of topics, but often circles back around to end-of-life issues, like this recent one on the definition of brain death in reference to the recent pediatric case in Washington D.C.
Frequent commenter here at Pallimed, Dr. Alex DeLuca has a policy/law blog titled War on Doctors/Pain Crisis focused on the struggle for good pain management and the support of doctors facing prosecution because of aggressive symptom control. It is also the official blog of the Pain Relief Network (PRN get it?). The prosecution regarding opioid prescriptions for hospice & palliative care doctors has thankfully not been in the spotlight, but isn't this something that our field may want to pay more attention to? Changes in law and policy and court decisions with opioids at the center can greatly impact our field, so best to keep an ear to the ground.
GrowthHouse started with several blogs but unfortunately many fell by the wayside as blogs are wont to do. But with the blog Goodbyes, we have some great contributions from Debra Bradley Ruder, a writer/journalist who worked with medical students at Harvard Med School following dying patients. From this work she has shared many stories on her blog about saying goodbye. Her style is narrative, with occasional mentions of articles regarding communication at the end-of-life.
Here is a sample of articles from Goodbyes:
A Cabbie and a Doc
Fulfilling a Baseball Dream
Two Women Blogging is written from the perspective of... well I guess the title says it all. The pseudonymous Jay is a primary care doctor who just took her palliative care boards and does some hospice medical directing and occasionally writes about her experiences there.
Washington State Politics: Choices at the End of Life~by Jay
Angela Morrow, RN writes for About Palliative Care (on the About.com website). Her blog is aimed more to the general public and so it serves as a good educational resource about our field. She also occasionally gets the scoop on me about palliative medicine news issues. The blog is also a gateway to a forum for people with questions about death, dying, hospice, palliative care, funerals, etc. The forum seems pretty well updated and is aimed at the general public.
The Checkout Line is a website centered around an advice column style blog written by journalist/editor Judy Bachrach. The questions readers ask her are quite detailed and the I find much of the advice she gives to be practical, thoughtful and similar to what many people might here from a hospice or palliative care professional. The contributions by some of the commenters is also helpful. She deserves at least some recognition for a clever title for her blog!
The Journey Learned is a physician blog written by Dr. M. He has only been writing since September 2008 and his focus is on teaching palliative medicine and what he learns from his interactions from his patients. He posts about once a week right now and writes in a much more narrative approach compared to here at Pallimed. I hope he continues writing about his experiences on the blog. Blogs are easy to start but it is sometimes tough to keep up the work!
Here are some of Dr. M's hospice related posts:
A Sailor's Salute
- Hospice Blog by Hospice Guy (July 2004) (Administrator)
- Bioethics Discussion Blog by Maurice Bernstein (July 2004) (Doctor)
- Pallimed by Rosielle, Sinclair, and Quinn (June 2005) (Doc, Doc,
- War on Doctors/Pain Crisis by Alex DeLuca (February 2006) (Doctor)**
- Hospice and Nursing Homes Blog by Frances Shani Parker (January 2007) (Writer)
- Reflections by Dr. Bruce Campbell (April 2007) (Doctor)
- Two Women Blogging by Jay and MPJ (April 2007) (Doctor)**
- Medical Futility by Thaddeus Pope (July 2007) (Law Professor)
- Hospice Foundation of America Blog edited by Krista Renenger (August 2007) (Organization)
- Goodbyes by Debra Bradley Ruder (February 2008) (Writer)**
- Palliative Care Success by Tim Cousounis (March 2008) (Executive)**
- DNR/DNI by Leo Levi (April 2008) (ICU Nurse)
- The Checkout Line by Judy Bachrach (May 2008) (Writer)**
- Pallimed: Arts & Humanities by Amber Wollesen and Amy Clarkson (May 2008) (Docs)**
- Pallimed: Case Conferences by Institute to Enhance Palliative Care (May 2008) (Org)**
- Center for Practical Bioethics Blog by various writers (June 2008) (Organization)**
- Dethmama Chronicles by Dethmama & Insurance Guru (June 2008) (Nurse and Admin)
- The Journey Learned by Dr. M (September 2008) (Doctor)**
- About Palliative Care by Angela Morrow (Start date?) (Nurse)**
by Christian Sinclair ·
Monday, November 17, 2008
Florence Wald, a humble pioneer of hospice in the United States died Saturday November 8th at her home. She had been receiving hospice services that she helped found and expand from a single program in Connecticut to the thousands of hospice agencies in the United States today. When she began to be involved with the early hospice movement in the early 70's she had already been dean of the Yale School of Nursing from 1959-1966.
The Yale School of Nursing had two profound quotes from her (italics mine):
"Hospice care for the terminally ill is the end piece of how to care for patients from birth on." Dean Wald wrote. "As more and more people - families of hospice patients and hospice volunteers - are exposed to this new model of how to approach end-of-life care, we are taking what was essentially a hidden scene - death, an unknown, and making it a reality. We are showing people that there are meaningful ways to cope with this very difficult situation."Her ability to imagine care for the patient to encompass all points of life including dying seems so obvious in the field today it is easy to forget what a breakthrough this was. The second quote demonstrates the need for increased awareness not just for the health care professionals but for the public as well. For her death and dying should not be an afterthought of good medical care.
Her first inspiration for end of life care was during a lecture from Dame Cicely Saunders, founder of St. Christopher's Hospice. The LA Times quotes her saying:
"She blew me away," Wald later said. "Until then, I had thought nurses were the only people troubled by how a terminal illness was treated."The LA Times also notes that she was in favor of assisted suicide as an option for the terminally ill, although the NHPCO website and the Yale School of Nursing website do not mention that so I am not clear on the primary source. Her latest work was dedicated to improving hospice access and care in correctional facilities. There is a scholarship at Yale in her name for nursing students helping underserved populations.
Another good quote this time from the NY Times article:
“In those days, terminally ill patients went through hell, and the family was never involved,” she said. “No one accepted that life cannot go on ad infinitum.”When she was once introduced as the 'mother of the American hospice movement' she quickly replied (NYT):
“That’s a completely incorrect description,” she said. “There were many, many people in those days who were just as inspired and motivated as I was.”Mrs. Wald was also supported directly by her husband in the founding of hospice as the NY Times notes:
In 1971, Mr. Wald left his engineering firm and returned to Columbia University to earn a degree in hospital planning. His master’s thesis became the proposal for the Connecticut Hospice.Thank you Florence Wald for your foresight, inspiration, and dedication to changing a medical paradigm so that many people could benefit from hospice and palliative care.
LA Times Article
Yale School of Nursing Article
NY Times Article
Monday, November 17, 2008 by Christian Sinclair ·
Wednesday, November 12, 2008
Philosophy, Ethics, and Humanities in Medicine has a review/discussion of the ethics & end of life challenges of left ventricular assist devices for heart failure (free full-text here).
(See this Fast Fact if you're interested in a concise summary: LVADs are partially internalized pumps for supporting circulatory function - they pump your heart for you - and were initially designed as temporary interventions for patients awaiting heart transplantation. At least one device is now approved as 'destination therapy' meaning it's implanted with the expectation that the patient will remain on it for life. Average survival is somewhere in the one year range. At least two trials have shown LVADs improve survival - even doubling it at one year [from ~25% to ~50%] - in well-selected patients.)
This is an absolutely essential paper for clinicians who encounter these patients (my assumption is that hospital-based palliative care clinicians who work at institutions with cardiac transplant programs see patients with LVADs at least on occasion) - I'm throwing it into my program's fellowship to-read list. The first section of the paper is a detailed, critical review of the data (survival, symptom, quality of life) from the largest LVAD trials, as well as an overview of LVADs' many complications (both easily measured ones like stroke, sepsis, device failure, etc. - as well as less concrete ones like the device's social impact, pain, inability to travel, anxiety from the device alarming, etc.).
The second section describes the critical importance of communication at the time of LVAD placement, and describes what patients and families really need to understand in order for there to be true informed consent about initiating it. It recommends getting palliative care clinicians involved up front, for a variety of reasons, but particularly to talk about alternatives to LVADs and what that would look like.
It then gets really wonky (a philosopher is first author on this paper), but wonky for a good reason, and that is that assist devices are often placed in emergency circumstances and without the patient's consent (instead using surrogate consent). (Alternatively they are placed with the patient hoping they'll be a 'bridge to transplant,' circumstances change, and the LVAD ends up as destination therapy.) Given that these devices don't represent a cure (although they clearly prolonged life for most who received them in a clinical trial setting), and are associated with major burdens and morbidity - the authors ask is it appropriate to initate them in patients without they themselves agreeing to them?
They cautiously conclude that it's ok to do this, which I can't technically disagree with, because the device can be stopped if the patient wakes up and says No thanks. That analysis, of course, greatly underestimates the emotional/psychic differences between withholding and withdrawing a therapy, not to mention the tremendous pressure that patients and families can feel from health care providers to continue with a course of therapy once started. This pressure is not because cardiothoracic surgeons aren't nice, patient-centered physicians (I'm sure a few aren't, but most I know are): but if you perform a super high-risk, time-consuming surgery, manage a patient through a rocky post-operative course, and then the patient wakes up and says Take this thing out - that puts you in a difficult, frustrating place. In addition, there are likely some patients who if you went through a full informed consent process, talking about alternatives in detail, would choose medical management instead of an LVAD; my guess is that a good number of these patients who receive one in emergency conditions would keep it any, given the difficulty of asking to have this thing which is pumping your heart for you turned off/explanted. This is not to say it was a wrong decision to do the LVAD, but I think we have to be realistic that even though patients have the right to say No it’s never as simple as that.
Wonkish speculation aside, it seems to me that patients considering LVADs therapy are prime candidates for palliative care expertise if there ever was one: facing an incurable, terminal illness, a potentially life-prolinging but also very risky and potentially high morbid therapy, poor prognosis under all circumstances. It's the closest thing we have to taking people dying from a terminal illness and hooking them up to a portable life-support machine (and it works). I’m curious as to if any pall care colleagues out there are in centers in which they routinely see these patients pre-LVAD decision (and not just when they are dying on the LVAD)?
(Image is from the article.)
Wednesday, November 12, 2008 by Drew Rosielle MD ·
BMJ has published evidence-based summary guidelines about the management of cancer pain. Nothing new of course. I found most interesting their recommendations for urgent needs for research:
- The relation between cancer pain and associated levels of psychological disability and distress
- Psychosocial interventions that are effective in reducing such disability and distress
- Standardisation of research methods into complementary therapies and the effect on pain of each individual intervention
- Determination of the benefits and harms of moving directly from step 1 to step 3 in the WHO ladder in patients with rapidly advancing pain who have never taken opioids before
- The effectiveness of different opioids and formulations in the management of breakthrough pain
- The method for determining the most effective dose of breakthrough analgesia for oral opioids such as morphine by comparing doses that are a fixed proportion of the daily regular opioid with a dose titrated to the individual patient or pain
- Determination of the effect of paracetamol on pain and wellbeing in patients already on a strong opioid regimen
- The role of ketamine as an adjuvant analgesic
- The role of topical analgesics, including opioids and topically applied local anaesthetics
- The value of opioid switching
- The role of cannabinoids in treating neuropathic pain.
I'm thinking through my counter-list of research I'd like to see for cancer-pain and it's something like this (please leave comments with your own, and please recognize this is a spontaneously improvised wish-list and nothing more):
- A controlled trial of ketamine as a co-analgesic alongside opioids for cancer pain (which involves oral ketamine and outpatients) with persistent moderate to severe pain or intolerable opioid side effects despite a couple weeks of opioid titration (or some similar inclusion criteria)
- A RCT of sublingual buprenorphine vs. oral morphine for cancer pain in a North American population
- Same for levorphanol
- Placebo controlled trials of methylphenidate and modafinil for persistent opioid-related sedation/fatigue
- A planned, prospective safety and efficacy trial with rigorous safety monitoring of outpatient opioid rotations to methadone in patients with relatively long prognoses (> 6 months)
- The big adjuvant smack-down pitting gabapentin, pregabalin, a TCA, and an SNRI (e.g. duloxetine) head to head for neuropathic cancer pain which looks at time to acceptable analgesia, safety/tolerance, and cost
- A large (for palliative care - you know - 50 patients or something) placebo controlled trial of systemic lidocaine for opioid refractory pain
- Same for mexiletine
- Long-term safety/efficacy trials for methylnaltrexone (at least monitoring trials) - these may already be going on
- Lidocaine 5% topical patch vs placebo patch for everything focal
- More trials defining with whom and when to use spinal opioids (e.g. intrathecal pumps)
by Drew Rosielle MD ·
Monday, November 10, 2008
Journal of Clinical Oncology has a double-blind, placebo-controlled trial of depot octreotide for the prevention of radiation-induced diarrhea. (The context here is that octreotide has some good trial data supporting its use to treat radiation-induced diarrhea.) This study involved 125 patients receiving radiation involving the entire pelvis (for a variety of malignancies); they received 20mg depot octreotide or placebo at enrollment and after 29 days. The study was powered at 85% to detect a 1-grade difference in diarrhea severity between groups.
It didn't look very good for octreotide. Diarrhea outcomes were essentially identical (incidence and severity) and the octreotide group had more adverse events (no biliary toxicity, but symptoms of GI cramping and constipation-like symptoms). Incidence of moderate to severe diarrhea was in the 20-30% range overall.
This study was done well enough that it's pretty safe to conclude that depot ocreotide is, indeed, worthless to prevent acute radiation associated diarrhea, and has signficant side effects. Given that there are some ok data for short-acting octreotide to treat diarrhea once it starts, I'm unsure whether this is an effect of depot octreotide itself or (more likely) simply a matter that the incidence of acute radiation induced diarrhea is low enough that prophylaxing for it with a drug with significant toxicities is just not worth it. Or both. Severe enteritis from radiation, while relatively rare, can be such a devastating and morbid complication (fecal incontinence, hospitalizations for hypovolemia, disruption in cancer therapy) that it's disappointing this didn't pan out....
J. A. Martenson, M. Y. Halyard, J. A. Sloan, G. M. Proulx, R. C. Miller, R. L. Deming, S. J. Dick, H. A. Johnson, T.H. P. Tai, A. W. Zhu, J. Keit, K. J. Stien, P. J. Atherton (2008). Phase III, Double-Blind Study of Depot Octreotide Versus Placebo in the Prevention of Acute Diarrhea in Patients Receiving Pelvic Radiation Therapy: Results of North Central Cancer Treatment Group N00CA Journal of Clinical Oncology, 26 (32), 5248-5253 DOI: 10.1200/JCO.2008.17.1546
Monday, November 10, 2008 by Drew Rosielle MD ·
Two more, briefly, from Journal of Clinical Oncology....
There is also a compelling editorial about the gap between patients' perceptions of the benefits of cancer therapies and reality (free full-text). It is a hard look at the language used in outcome reporting (in the scientific literature - not in the lay media - which is even more of a problem) and how that is often misleading (e.g. implying a statistically significant survival benefit represents a clinically significant benefit). It takes on 'progression-free survival' (suggesting instead 'progression-free interval') and asks the very relevant question If the death rate is reduced, how come everyone died? regarding trials involving incurable cancer and how reports of reduction in mortality can be interpreted as meaning some patients were cured.
In addition to this I'd add the mass-confusion patients have about 'response' and 'remission' and the constant touting in the lay media of 'exciting new breakthroughs' in cancer therapy. Sure, when a novel class of cancer therapies come available - or when a previously untreatable (at least with systemic therapy) cancer becomes 'treatable' (e.g. sunitnib for hepatocellular carcinoma) - that is a 'breakthrough,' and happy news. Our patients reading about that however usually aren't told (until their weary oncologist has to tell them) that it's unlikely to change the natural history of that disease for the vast majority of people who have it. Industry press-releases flooding 'consumer' news sites don't help, either.
Finally there's a letter (really an editorial) calling for more a more rigorous definition of 'best supportive care' in cancer trials.
by Drew Rosielle MD ·
Wednesday, November 5, 2008
Nominee for best article title for 2008
Live Fast, Die Young, Leave a Good-Looking Corpse. David M. Burns, MD Arch Intern Med. 2008;168(18):1946-1947.
Winner for 2005
Palliative Trajectory Markers for End-Stage Heart Failure. Or "Oh Toto. This doesn't look like Kancerous!" Turris M, Rauscher C. Can J Cardiovasc Nurs. 2005;15(2):17-25.
(HT: A. Wollesen)
Feel free to email us any other good titles you find.
Yesterday, Michigan voters approved Proposal 1 which allows medical marijuana to be prescribed for pain, nausea and other symptoms for any medical condition determined to be 'debilitating.' Two interesting quirks about the actual law. In the titles/subject headers marijuana is spelled with a 'j', in the body of the document the 'j' is replaced with an 'h.' I had never seen it spelled 'marihuana' before. But Wikipedia says it can be so there you go. The other quirk is that it lists 'nail patella' as a debilitating condition. I feel like a bad internist that I had to look this up, since I had never heard of it. I did not find a lot of information about intractable pain and NPS, but it is curiously prominently listed in the Michigan law.
Can you name the 13 states that medical marijuna is legal in without resorting to Google? Give your best try in the comments section.
Medscape Interview of Pallimed Authors
For the Grand Rounds a few weeks ago we were interviewed by one of the coordinators. If you want to read about how Drew, Tom and I got into palliative medicine feel free to check it out, although you will need a user name and password to access it. (free)
More on Washington Death With Dignity Main Supporter
NY Times Magazine published an article in December 2007 on Booth Gardner, founder of the Washington State I-1000 initiative for Physician Assisted Suicide and some background into his motivation for proposing the legislation.
Freakonomics Blog Reviews the Economics of Managed Death
But curiously leaves out anything about the high quality, person-centered system wide cost-savings care found with hospice. The post is short and really more of a stem and a question for commenters to expound upon, which I would encourage you to read.
Kinda Creepy and Weird File
After giving up his euthanasia advocacy, Jack Kevorkian ran (and lost) as an independent for a House of Representative's seat in Michigan. This isn't really all that creepy or weird until you go to the Detroit News website to read the article and get 5 vignettes of Kevorkian's car, bedroom, kitchen, and bathroom. With bad puns on the vignette titles: "Driving with Dr. Death." [Groan] and the "I'm just hanging out with my slightly eccentric older friend" music, it just gives it this surreal aura. This was an interesting choice for web content by the newspaper.
Most interesting exchange:
Kevorkian: "Death is the enemy. Like hell it is! Death is natural! How can something natural be the enemy?
Reporter: "Yeah, but so are hemmorrhoids and I don't like those either."
Hopefully this will be the last of the medically hastened death news for a while. I need to get back to some of Pallimed's reguarly scheduled programming.
Wednesday, November 5, 2008 by Christian Sinclair ·
After everyone wakes up from their political hangover all the other 'minor' political races will start getting sorted out. Senate seats, and House of Rep rearrangements and the local initiatives. Some got a lot of press like Colorado's personhood amendment and California's same sex marriage ban.
But I think a lot of people* across the US may be scratching their heads to wake up to another state** that has voted for the option of medically hastened death for terminally ill patients. Washington residents voted by a large margin (58 pro-42% opposed) to have a law endorsing physicians to prescribe medications with the intent of hastening a competent patient's death at their voluntary request. Much of the law is set up to look similar to Oregon's Death With Dignity Act that is now in it's 10th year since the Supreme Court appeals. I doubt Washington's will be appealed all the way to the Supreme Court again, but I would expect some legal opposition to hold up enactment of the law.
How this will affect hospice and palliative care programs in the area will be interesting to follow. Will they grow given the increased dialogue about end of life choices? Will some hospices assist with this practice and others not participate? Would this be an ethical marketing split?
If this gains traction in other states I could foresee medically hastened death may split the palliative medicine community. I wish end-of-life issues were talked about more openly in medicine and in public so that people could make informed opinions rather than strictly on hyperbole or emotional appeals of the moment. A boy can dream.
If any Pallimed readers from Oregon can share your on the ground experience in Oregon with how hospices dealt with this sensitive subject please feel free to add some info in the comments.
Would readers be interested in having occasional anonynmous polls here about topics such as this to generate further discussion? It is a feature we could implement fairly easily but we hav enot wanted it to be some sideshow gimmick.
*But not Pallimed readers, cause I harped on this so much in the last two weeks.
** Many people are still surprised to hear medically hastened death is legal in Oregon
by Christian Sinclair ·
Tuesday, November 4, 2008
As much as we've enjoyed, um, politely complaining about the helpfulness of Cochrane reviews of palliative care-related topics, one was just released which got me a little worked-up. It's a systematic review of antipsychotics for acute and chronic pain control. They included randomized controlled trials of adult patients who were treated with an antipsychotics, in which the major outcome of interest was pain (any control was allowed - e.g. placebo, active, no treatment, etc. - and any duration or severity or type of pain was allowed). All the typical Cochrane search and quality strategies were employed.
Tuesday, November 4, 2008 by Drew Rosielle MD ·
by Drew Rosielle MD ·
by Drew Rosielle MD ·
Saturday, November 1, 2008
Some lighter fare for the weekend - two from the NY Times and one about veterinary palliative care (see subsequent post).
First is a brief editorial from Thomas Lynch, the Michigan undertaker-poet-philosopher who I think of as a kind of Robert Bly of cadavers (see these posts here and here). It's about All Saints'/All Souls' Days and Americans' relationship to death. He's always an interesting read:
We humans are bound to and identified with the earth, the dirt, the humus out of which our histories and architectures rise — our monuments and memorials, cairns and catacombs, our shelters and cityscapes. This “ground sense,” to borrow William Carlos Williams’s idiom, is at the core of our humanity. And each stone on which we carve our names and dates is an effort to make a human statement about death, memory and belief. Our kind was here. They lived; they died; they made their difference. For the ancient and the modern, the grave is an essential station. But less so, lately, especially here in the United States, where we whistle past our graveyards and keep our dead at greater distance, consigned to oblivions we seldom visit, estranged and denatured, tidy and Disney-fied memorial parks with names like those of golf courses or megachurches.
The second is a story about hospice chaplains in NYC. It talks about how that apparently hospice chaplaincy services are increasing in the US (up from 59% to 72% per the NHPCO) and presents that as a function of patient demand - something I was unaware of. The story is also discusses very positively the non-sectarian nature of the work, and implies, perhaps, the increase in demand is due to more and more patients not having pre-existing relationships with their own clergy.
Contrary to the above I'll point out Hospice Guy at Hospice Blog recently posted about his concerns hospice chaplains may be phased out in many hospices in the future.
Saturday, November 1, 2008 by Drew Rosielle MD ·
I've had an interesting email conversation with a veterinary radiation oncologist who is involved in the nascent pet hospice/palliative care movement, Dr. Lillian Duda. She was kind enough to say I could share some of her comments on the blog (slightly edited for flow):
Yes, there is a small but growing veterinary hospice/palliative care movement. There is even one pet hospice foundation that is an associate member of the National Hospice and Palliative Care Organization.She recommends this site for further links as well: www.pethospice.org
It is an interesting topic of discussion for several reasons. Obviously, euthanasia has always been a part of veterinary medicine and a mainstay of veterinary "palliative" therapy. However, as some pet owners demand ever increasing levels of high-tech medicine for their pets (pets that are often treated as nearly human members of the family), veterinary specialists have dealt increasingly with issues of futility and aggressive treatment efforts at the end of life. These efforts can be significant--specialty hospitals and tertiary care/academic centers have the capability of 24 hour ICU, ventilator support, hemodialysis, stereotactic radiosurgery, etc. etc. There are also a group of owners who decline euthanasia, and veterinarians must either provide palliative care (for which we have little training and some degree of ethical quandry) or leave owners to do what they can and watch and wait for their pets to die "naturally" at home.
There is talk about making palliative care a veterinary specialty (meaning board certification), although I think this is unlikely to happen any time soon. I serve as the veterinary editor for OncoLink. A veterinary page was started because a significant number of pet owners were contacting them with questions about cancer in their pets. There was a heated discussion amongst the editorial board early on, because a number of people protested vehemently against having information about animals on the same site as information about people. Some felt it was demeaning and insulting to so closely equate dogs and cats with people. The decision was to maintain a veterinary page, and an article was posted to help explain this decision. It can be found at: http://www.oncolink.com/types/
article.cfm?c=22&s=69&ss=550&if you are interested. id=6003
If you're interested in the topic I suggest reading the oncolink page above - it's quite illuminating.
What struck me most about Lili's comments, and the reason I decided to post them, is just how familiar all those problems/concerns/tensions sound to us in the 'human medicine' world: all this technology which can prolong life but with major costs (both financially to be sure, but also emotionally, and to quality of life), providers struggling with ethical and professional dilemmas about if doing all this stuff makes sense and worrying about causing needless suffering for out patients, as well as providers feeling unprepared and poorly trained to deal with all this as well as to simply care for patients as they die. In addition, it's notable that access to euthanasia, and even broad cultural and professional acceptance of the practice, has not prevented this from becoming an issue - just as the practice in humans (in the Netherlands) has not at all slowed down or changed the acute need for palliative care-competent physicians and services there....
While I'm here, and while we're posting lighter weekend fare, I'll tell my own story about pet hospice. One of the friends I did residency with was very much a pet-person (several dogs and cats). She told me that she got one of her cats from her vets office: it was dying, family had abandoned it, a lot of symptoms (I don't remember what was wrong with it or why it wasn't euthanized), and she agreed to take it in to care for it with the expectation it'd die within a few weeks. She took it home, fed it, gave it meds, and several years later the cat was alive and well and still with her. Another story familiar I'm sure to all of our readers who work in hospice!
by Drew Rosielle MD ·