Mastodon 07_10 ~ Pallimed

Tuesday, October 30, 2007

Celebrations Reflecting Mortality: Halloween, Day of The Dead

Candy corn, costumed kids, ghouls, goblins, and scary stories. The traditions of the American (commercialized) Halloween are good for a few laughs and scares, but this time of year is a great example of how embracing our own mortality can be a celebration of life. Dia de los Muertos (Day of the Dead) is a traditional holiday, originating from Latin America spanning Halloween, All Saints Day and All Souls Day. The most well-known celebrations of Dia de los Muertos originate from Mexico where whimsical artistic expressions of skeletons help people remember and commemorate their loved ones. It originated with the indigenous cultures of Mexico (Aztec, Olmec, Maya, etc) and was later interlaced with Catholic themes as those two cultures merged in the past few centuries.

With a superficial glance, celebrating and honoring the dead may seem morbid or perverse, especially to those who may see death as a taboo subject, only to be talked about when necessary. But Dia de los Muertos helps break the somber tone with various traditions that I wanted to share with you here. This is a great theme to bring up in palliative care as a teaching point or in counseling and working with patients and families in how to embrace mortality as a celebration of life.

Celebrating the lives of the deceased

Dia de los Muertos is a time to go to cemeteries and bring gifts to deceased loved ones. Toys for children or flowers, candy, food and even alcohol for adults. There people often eat and picnic near those who have already died. In addition altars are made with pictures, candles and other memorabilia celebrating the deceased.


The skull is omnipresent in Dia de los Muertos altars, decorations, and costumes. It is typically drawn in a light hearted way, and some art portrays skeletons in colorful, comical situations. The symbol of a skull is also highlighted in food preparation with sugar skulls, cakes, and other foods decorated with them. It is interesting how the skull has recently been raised in teen pop culture and clothing in the past two years, often in a ironic and funny way.


The above mentioned sugar skulls are a popular treat. They are for eating, not just for decorations. Pan de muerto (bread of the dead) is another popular food made during this celebration.

It would be nice to see some of these traditions given some attention in the United States outside of the Southwest. Death does not have to be solely perceived as the inability to cure. The traditions that help us preserve the memory of deceased loved ones are important. Hospice and palliative care teams could engage their local communities to highlight these traditions. It might make us all a little less fearful of death and more appreciative of the short lives we have.

Here is one of the better of many YouTube videos showing the festivities in Mexico.

Photo Credits:
Wikipedia entry José Guadalupe Posada
Flickr.Com users Jonas Romo, Simon Crubellier, xxtickleticklexx

Tuesday, October 30, 2007 by Christian Sinclair ·

Sunday, October 28, 2007

New Palliative Care Journal

A new title has been added to the long list of “Current Opinion” journals, Current Opinion in Supportive and Palliative Care. The full text of the first issue of this quarterly journal is available free. The editors [Sam H. Ahmedzai, Richard J. Gralla and Anthony H. Dickenson] provide the following rationale for this new journal:

“While there is no shortage of original publications of preclinical studies, clinical trials and guidelines, however, there appears to be a void in supportive and palliative care for short, concise, current evidence-based reviews – hence this journal filling that void.”

Three topics or themes will be treated in each issue. It will also have an international bent.

Included in the introductory editorial is a rather good graphic, taken from a previous Ahmedzai article, of supportive care in the cancer continuum. The editorial also states that the journal will not be limited to cancer, but “will embrace the spectrum of chronic and life-limiting illnesses facing societies.”

There continues to be discussion/disagreement in the field about the definitions and boundaries of palliative care. And a different editorial in the same issue states that “until recently, supportive care was seen as a rather unglamorous area.” Ahmedzai et al use the WHO and Multinational Association for Supportive Care in Cancer definitions for palliative care and supportive care, respectively, and cites the distinction between them as

“mainly in the timescale of involvement with the patient (and family carers) –supportive care from the beginning of illness until death or into survivorship; palliative care focusing on the latter stages of life. In addition, supportive care engages head-on with curative, life-prolonging and life-maintaining treatments, whereas palliative care generally works after these have been withdrawn.”

Incidentally, this would also be somewhat at odds with the National Cancer Institute’s approach to both palliative care and cancer survivorship: they both begin at diagnosis and continue throughout the cancer experience.

Interestingly, Yale Cancer Center is currently considering a patient care model which explicitly addresses supportive, survivorship, and palliative needs under one umbrella. The recently opened Survivorship Clinic is a component of the Supportive Care Program. Development of an ambulatory palliative care program, also within the Supportive Care program, is in the late stages of discussion.

Does program development and structure follow definition or vice versa? They probably move hand in hand, and it may not matter, anyway. Local institutional financial conditions and culture probably drive the evolution of individual programs more than do philosophy or a particular conception of palliative, supportive, or survivor care.

Before closing, I would like to recommend 2 other provocative editorials in this first issue of COSPC. The first is a sobering look at cancer pain management and a sharp critique of the palliative care field and its prolonged promotion of the (still) nonevidence-based WHO analgesic ladder. The second is a call to look at the bigger picture of toxicity management from the very wide range of cancer therapies currently available. This will require multidisciplinary research—“getting out of our silos”—as well as multidisciplinary clinical care.

Sunday, October 28, 2007 by Thomas Quinn, APRN ·

Thursday, October 25, 2007

Many Items, Part 1

This is the first of a couple posts of 'many items in brief' as my inbox is overflowing with articles and I'm resigning myself to covering none of them in depth.

There have been a couple recently published articles about treating 'behaviors' in patients with advanced dementia. First was a randomized, blinded comparison of citalopram with risperidone in the American Journal of Geriatric Psychiatry. It involved ~100 patients who were started on therapy during a hospitalization and followed for 12 weeks. Basically no differences were found between groups. The problem here of course is that antipsychotics aren't particularly efficacious for behaviors in dementia in the first place so the real question is not whether citalopram is 'as good as' risperidone but if it's any better than no drug treatment at all. The other was one in the NEJM looking at donepezil vs. placebo for 'agitation' in dementia. This too was a 12 week randomized trial involving ~270 patients and found no benefit. We've occasionally tracked silly or Orwellian drug/trial-group names on Pallimed and the NEJM study provided a fresh example: the trial-group is called "CALM-AD."

Diabetes Care had a fascinating study about perceived burdens of diabetes care vs. its complications. It is based on interviews with ~700 adults with diabetes and involved questions about the perceived benefits/burdens of various scenarios (intensive glucose monitoring/control, diabetic complications such as retinopathy, etc.). To be clear - this involved asking real diabetics to speculate on the effects on their lives of hypothetical treatment/health status scenarios - it was not measuring the actual effects of these scenarios on patients' quality of life. They found that the subjects rated intensive medical therapy as bad as (having as much of an impact on quality of life as) all but the worst medical complications of diabetes. That's certainly interesting, but it's hard to make a big deal about it given all the hypothetical modeling going on. More interesting to me is just the fact that this research is going on - people are asking these questions - & I hope more to see more of this in the future.

Journal of Clinical Oncology has a metaanalysis (pooled analysis) about the use of ultra-short screening tools for psychological problems in cancer patients (such as a single-item 0-10 'distress' thermometer). Basically the pooled analysis showed that these tools are, in fact, good screening tools: sensitivity 78% and negative predictive value 93% for depression. However they are poor diagnostic tools and the accompanying editorial stresses that they should be used for screening only.

Another issue looks at psychological distress/burden of spouses of cancer patients in Israel: there is a lot of distress.

Pain is publishing revised evidence-based guidelines on the pharmacologic treatment of neuropathic pain. It's a reasonable and rather practical look at the evidence and divides agents into first line (e.g. TCA's, SNRI's, gabapentin/pregabalin), second-line, and third-line classes. Great one for the teaching file.

There's an accompanying editorial by Nathan Cherny, subtitled 'From Hubris to Humility' which is worth a read. It addresses the guidelines demotion of opioids from 1st to 2nd line agents as well as the reality that neuropathic pain isn't too easy to treat (well). A quote:

"The second change relates to the tone of the document. A new humility has been introduced into these guidelines. The 2007 guidelines are much more circumspect about what can be expected from the outcomes of pharmacotherapy for neuropathic pain. The new document describes the potential efficacy of the recommended agents whilst maintaining a realistic outlook on the actual likelihood of achieving a good outcome for the individual patient. In their conclusion, the authors remind us that despite the best of care and sequential trials of therapy, pain will remain unrelieved or inadequately relieved for 40–60% of patients suffering from neuropathic pain. The hubris is gone and the limits of what can be routinely expected from the best of care are candidly discussed. This somber assessment challenges us on many levels. How can we help the patient with persistent inadequate relief despite sequential trials of individual and combination therapies? How do we, as caring physicians, deal with the limits of our current therapeutic repertoire and with the sub-optimal outcomes our patients must endure? This question has particular poignancy in the context of the asserted right to relief of pain that we ourselves have espoused."

There's a new Cochrane review about methadone for cancer pain. Conclusions are as-expected: it's efficacious, no evidence it's better than morphine, be careful with using it. This is certainly one topic for which there are more reviews than there are actual trials....

A couple media items:

PBS's Frontline is showing a documentary about Thomas Lynch on October 30. He is the undertaker who writes/speaks very eloquently (and idiosyncratically) about death and dead bodies (see my prior post on him here).

The NY Times health blog The Well posted a provocative piece about 'When Doctors Steal Hope' about doctors giving inaccurate and pessimistic prognostic information. Read the comments which are just as interesting as the piece itself. Missing from this context of course is the well-researched reality that most of the time doctors give overly optimistic information (we both tend to overestimate outcomes to ourselves and then deliberately overestimate prognosis - at least longevity - to our patients - see Lamont & Christakis' work on this).

(Thanks to Christian who alerted me to this but was too lazy himself to post about it - c'mon man you've only posted 3 times in the last week!)

The FDA is putting out new warnings about modafinil - Stevens-Johnson Syndrome & other hypersensitivity reactions are being reported.

Thursday, October 25, 2007 by Drew Rosielle MD ·

Tuesday, October 23, 2007

Grand Rounds Vol 4.5 - Prognostication

Welcome to Grand Rounds Vol 4, No 5!

The theme today is...well I shouldn't have to tell you . You probably already prognosticated it. The theme for this week is 'prognostication', the over-looked, maligned medical skill. Especially when compared to the two glory hounds, 'diagnostics' and 'therapeutics,' 'prognosticating' is often derided as a 'guess', lost in a mumble of statistics about recovery, or barely even mentioned at all. Most people fail to realize being able to predict the likely medical outcome is a foundation of selecting which therapeutic options are most appropriate for a patient. It is important to realize that prognostication is not just about predicting life expectancies, and that it affects all of medicine.

Out of 30 submissions, I whittled them down to 15 posts that best reflected the variety of ways prognosis plays a role in medical care. Medscape has posted a Pre-Rounds interview of Pallimed's founder Drew Rosielle describing our approach to medical blogging.

Onward! To the posts!

The volunteer chaplain at Rickety Contrivances of Doing Good contemplates on how hope intersects with medical conditions. Prognosis and Hope hang out in the same neighborhood south of Future Blvd. and just west of Uncertainty Avenue. They both forecast what the future may bring from the corner you are presently standing on.

Predicting the likely outcome of medical politics seems to be more difficult than clinical prognostication. But girlvet gives it a try with a stream of consciousness post reviewing all the players trying to shape the future of health care. Her prognosis: universal health care is inevitable, but no certain time frame or predictions as to the quality.

Sometimes the answer to a patient's prognosis is: "There are too many unknowns to formulate a prognosis, (aka I don't know)". But that should never substitute for "I don't want to hazard an estimate." Luckily Dr. Trofatter at Fruit of the Womb is smart enough to work through a very unique case of retinal artery occlusion in a 29 year old pregnant female. Given the uncertainty of the prognosis, the answer to the appropriate therapy is closer follow-up for a potential high risk pregnancy.

The poor expected clinical outcome for patients can be predicted when medical staff find administrative policies that do not reflect the accurate flow of medical information. A key source of errors is the ever-expanding and not always correct medication list. Nurse Kim takes us on a examination of how she formulated her prediction of poor outcomes at Emergiblog.

Dainius A. Drukteinis, M.D., J.D. at NY Emergency Medicine presents a court case in which an emergency doctor could not find a consultant willing to come to the ER to perform an emergent thoracotomy. What do you tell your consultant in regards to the emergency? You have to rely on your formulated prognosis for the patient.

One of the easiest ways to prognosticate is to look at the past. Got altitude sickness before? You are highly likely to get it again. You might want to ask your physician about Diamox per Medicine for the Outdoors.

Need help trying to figure out where you are going as a medical student? Ask someone who has been there. And when they depress you and tell you the future is bleak, go talk to Tiny Shrink. She'll give you a little pep talk about your future.

To predict how patients may do with any medical condition, we need to know about the medical condition first. But what is the prognosis of public information sites like Wikipedia and Citizendium? If the masses use these sites, should the medical profession shun them or engage them? ScienceRoll gives us the scoop.

Hearing a prognosis for adults is hard enough, but when it comes to children, thinking about medical outcomes seems to bear a heavier weight. A Chronic Dose examines various programs helping children live through their illness.

Formulating a prognosis allows for uncertainty and the ability for our actions (patients and medical staff) to possibly move the huge stone called destiny. In reflecting to the past we see our future more clearly. How a patient sees their illness can be counted in numbers or described poetically, and sometimes both, like Six Until Me posts.

Are you excited about your vacation? Bet you are going to have fun, even with your knee surgery and all. The Health Business Blog predicts the future of medical tourism. 'Signs point to yes.'

Hearing a prognosis of a few months to live can be a call to action for caregivers. Mother Jones, RN at Nurse Ratched's Place posts about the need to support caregivers and the hard unpaid, under appreciated work they do. Good resources in the post and comments.

Genetics testing and Huntington's disease. You have the gene, you have your fate. Should you get the test or not? Listen to this first person account podcast of making this difficult choice from Eye on DNA. Better than your prime time medical drama show. Start listening, you won't stop. Neurologists get a hit for being somewhat reluctant in sharing information thereby forcing the public to the internet for information.

Predicting the day of death is not solely the province of the esteemed medical doctor. Sometimes patients beat us to the punch and let us know what their body is saying. Read the post from Foggy Bottom Lantern and find out if the patient was right.

Dr. Val Jones
posts about a friend whose life is unencumbered by prognosis after being diagnosed with metastatic colon cancer. The effect of hearing a possible limited life expectancy is not always a negative as some would naturally think. A short prognosis often brings the important things in life into focus, as Dr. Jones found.

Thank you for all the submissions and a great thanks to Nick Genes for organizing Grand Rounds. The baton is passed to Paul Levy at Running A Hospital for next week's Grand Rounds.

For more information on medical prognostication, please check out Pallimed's Prognosis Links, read the seminal book Death Foretold by Nicholas Christakis, or see my article on communicating a prognosis in advanced cancer in the Journal of Supportive Oncology.

Photo credits: users jordy1, Daniel Y. Go, Blondie5000, fallsroad, mactiste.

Tuesday, October 23, 2007 by Christian Sinclair ·

Thursday, October 18, 2007

Pallimed Interview: AAHPM CEO Steve Smith

This post is the first installment of a new format for Pallimed. While we here at Pallimed do not profess to be professionally trained journalists, we like talking to people who have an impact on our field, and think that they have some things that would be interesting for our readers to know.
The American Academy of Hospice and Palliative Medicine recently announced the hiring of Steve Smith as the new CEO of the Academy. He only started in August, but has been hard at work getting up to speed on the work and history of the AAHPM. Mr. Smith has experience with other medical societies including the Alzheimer's Association and the American Academy of Physical Medicine and Rehabilitation (AAPMR). I recently spoke with Dr. Cameron Muir, the current president of the AAHPM, who gave an enthusiastic endorsement of Mr. Smith's approach and guidance for our field.

Below are some of the questions I asked Mr. Smith, so that we could get to know him a little better.

Pallimed: As the new CEO of a organization of physicians, do you have any practical experience in the actual provision of health care services (i.e. working in a hospital, clinic, medical facility)? If so, how does this experience shape your role and views on the work of the people you are leading?

Steve Smith, CAE: I have always had a strong interest and relationship with physicians and other health care professionals – particularly those who work together as part of interdisciplinary care teams. Throughout my career, I have been fortunate to work closely with a number of physicians, nurses, social workers and clergy. They have been a great source of wisdom, knowledge and inspiration to me both personally and professionally.

Successful management of a non-profit organization – particularly those associated with medicine – requires a unique set of competencies and knowledge about the field. Since I have not worked directly in a palliative care or hospice setting, one of my priorities during the first year as CEO is to spend significant time with members in their practice environments and work settings – in addition to the traditional meetings, conferences and phone calls where our paths will naturally cross.

I see the work we do at AAHPM as an important ingredient in the provision of quality health care – since we are a resource for education, advocacy, mentoring and networking for our members. Our job is to provide access to information, tools and communities that ultimately leads to quality care and support to patients and their families. That’s a goal we all share.

What brought you to the AAHPM as a career choice?

There is truly no other place I would rather be than AAHPM. This is an important time in the history of the subspecialty and I find the members I have met to be genuinely enthusiastic and committed to the mission of advancing the science of comfort while affirming the art of caring. The work we do together over the next several months and years will truly be transformational. The foundation of the Academy is strong and solid -- a testament to the Board and the many volunteer leaders and staff members who have made positive contributions through the years. I look forward to experiencing all aspects of AAHPM and discovering where there are opportunities to change and grow.

Have you seen palliative care up close?

Part of my undergraduate and graduate work focused on Gerontology (in addition to Communications) so I was first exposed to palliative care and hospice through studies and coursework, including a practicum in “Death & Dying.” I also spent several of my college years working part-time in resident services at a continuing care retirement community, so that gave me additional exposure and opportunities to connect with individuals who were had chronic illnesses, some of which were ultimately terminal. I was also involved with initiatives related to palliative and end-of-life care for people with dementia while working for the Alzheimer’s Association national office in Chicago.

One of the advantages and responsibilities that comes with these experiences like these – I believe – is that others see you as a resource. As a result, I have become a more educated health care consumer and have been able to refer (informally) many people to resources, including palliative care services, available within our community. Several members of my family have experienced palliative care … and others who should have did not. I think that’s often the case and I hope we can do more to increase the levels of public and professional awareness moving forward.

Can you tell me more about your roles with the AAPMR and Alzheimer's Association? Do the missions of these organizations conflict or compliment the mission of AAHPM?

Each day I’m amazed by similarities I see. Those involved in Alzheimer’s care are extremely passionate about their work and recognize that good care and support extends beyond the patient to loved ones and other caregivers. I see that same philosophy in hospice and palliative care.

Physicians who work in physical medicine and rehabilitation (PM&R) utilize a comprehensive, team approach to patient care. They also focus on minimizing pain and discomfort and maximizing quality of life. So again, there are similar philosophies, priorities and people within the two organizations.

All three groups have experienced significant growth and maturation in recent years as the population ages and more physicians and practitioners are drawn to these areas of medicine. Increased awareness, utilization, and expanding resources for members become the catalyst for change and expansion. Often times this requires new approaches to strategic planning; innovations in the development and delivery of products and services; and adjustments to existing governance, management and leadership development models. I have been fortunate to be a part of some pretty exciting transformations and I believe, like many others I talk to, that AAHPM is on the verge of something similar.

Your credentials list CAE, could you tell us more about the training the CAE program gives you, and how you plan to apply that training in your new role?

CAE is the professional certification for association management. It stands for "Certified Association Executive". The CAE credential designates those who have the knowledge to serve as the chief staff executive of a nonprofit organization of any type or any size. There are several criteria one must meet before he or she can sit for the exam and ongoing studies required in order to remain abreast of current practices in association management and remain certified.

There are many dimension to managing a professional association, including oversight of financial, operational, legal and governance practices – in addition to ongoing medical education, public policy, publishing, product development, fundraising and committee activities that require ongoing attention. AAHPM has a lot of moving parts and players so effective planning and management is critical.

Hypothetically, as the new CEO, a philanthropist has given you a no-strings-attached $10 million budget to start any new program for the Academy that you see fit. What one or two initiatives would be of interest to you that the Academy may not be highlighting right now?

That would be terrific. Of course, when an organization accepts or secures any type of grant or gift, it always comes with “strings.” Often these monies are restricted, meaning they must be used for specific projects or initiatives. Once the intent is clear, the Board would need to appoint a committee or task force to determine how it could most effectively be used. A number of strategic initiatives would be considered and I suspect some type of multi-year project would be established that would benefit both the membership and the field. It is important that an organization demonstrate it can be a responsible steward of all the financial gifts it receives – whether they are from individuals, private foundations or industry. Therefore, checks and balances must in place – along with ongoing measurement, reporting and communication. As CEO, my job is to make sure these systems are established and followed. So ultimately, the decision regarding what to do with the money would truly not be up to me – and that’s the way it should be.

How would you describe your leadership style?

I have been described by other colleagues as communicative, collaborative and catalytic. In other words, I like innovation and believe strongly that the best way to move an organization forward is by identifying a shared vision and engaging people in the work that needs to be done. I also work hard to strike a balance between being externally focused and internally sensitive. In practical terms, that means I believe it is equally important to tap the collective wisdom of our vast hospice and palliative care network so we can both anticipate and analyze forces that effect the health care environment (external focus) in a way that addresses what members want and need most (internal sensitivity). Sometimes, organizational leaders become insulated, isolated, static or even skewed if they aren’t paying attention to what is important to others. Continual environmental scanning and member surveys are helpful “reality checks” that I like to employ.

Self-care is important in our field. How do you take care of yourself, and achieve a good balance between your personal and work life?

I enjoy spending time with my friends and family. My wife, Karen, and I have three boys – Zack (12), Logan (8) and Blake (2). Like so many parents, we find much of our free time is spent on homework, traveling and attending their sporting events, and any other activities we are able to squeeze in between. Most days I also make time to connect with friends, read for pleasure and engage in some type of physical exercise. Until recently I was a volunteer at a local adult day center for individuals with dementia, but unfortunately it closed. I’m hoping to get involved with a palliative care program and continue to serve on a committee for the local chapter of the American Lung Association as well as a professional organization for association professionals here in the Chicago area. I find volunteer work to be fulfilling. To a certain degree, it also helps me experience what it’s like for those who volunteer within the Academy.

Thank you very much for your time Mr. Smith.

If there is a professional in our field that you think Pallimed should know about, please email Christian Sinclair at ctsinclair @t gmail d0t com

Thursday, October 18, 2007 by Christian Sinclair ·

Wednesday, October 17, 2007

Heated Criticism of Living Wills Spills Over

The Washington Post published an editorial on the drawbacks of living wills as powerful agents in advanced care planning. Well at least that is how the article started. The author of the piece, Charlotte Allen,was recently diagnosed with breast cancer, luckily caught in the early stages. The frustration of the piece stems from the omnipresent questions about living wills.

"Do you have a living will and if not would you like more information on them?"

She felt "ever-so-slightly harassed" and imposed on by the frequency and style in which these questions were asked. So much so that she took these questions to come up with a conspiracy theory. The medical establishment and secular elitists want you to die. Now if you have read this post this far, I highly recommend you go read the primary article, because I am not going to re-hash it line by line here (see the end of this post for that). I do not recommend it as a fine piece of well-founded opinion writing, but I do recommend reading this piece, because I think this article represents a sizable minority view that is important for the medical field and palliative care especially to recognize.

In my early training in hospice and palliative care, I was excited by this new approach to medicine. Spending time talking with the patients and families, openly discussing difficult life and death topics with them so they could make the decisions that were in their best interest; these actions were very rewarding. But I did go through a brief militant hospice phase, where I thought hospice was 'right' for everyone, I just had to help them understand that. So I can see where Ms. Allen may see some of this over-bearing "accept death already, would ya?" style. From talking with more patients and families, I soon learned that hospice was not right for everyone. Some people need to fight to the very end. That is a good death for them. But because some want to treat to the end, it does not mean medicine has a death-wish for patients when we address end-of-life issues.

She impedes the full impact of this rhetorical exercise with the use of unnecessary pejorative words, broad generalizations, unfounded accusations, and setting up an artificial us against them divide. Readers familiar with Pallimed will know that we have outlined some of the limits of living wills, and surrogate decision making, so in part I agree with some of the points that Ms. Allen attempts to make. I just wish she did so in a much more factual way without using fear and smear tactics.

If you are really interested, I encourage you to read some of the entertaining 9+ pages of comments and the transcripts of a Q&A (much shorter than the comments). Most of the comments seem to oppose most of her points which I was glad to see that the readers of the Washington Post seemed to be well-informed. Most of the people who did agree with her broader accusations tended to side with her on opposing the outcome and decision making process of the Schiavo case.

Some point by point issues with the article. This is kind of long. Well really long.

Use of fear as a anti-establishment tactic.
  • I found something weasely...
  • I've developed a sneaking suspicion that someone else may be hoping to call the shots
  • "dying when we, the intellectual elite, think it is appropriate for you to die."
Who are the intellectual elite? Classic 'us vs. them' technique that leads to conspiracy theories. She answers later in the transcript that she defines the intellectual elite as: "Great minds at our universities and media."
  • with the growing acceptance of such notions as physician-assisted suicide
See Drew's last post on public misperception on what euthanasia means. Polls on public acceptance of PAS vary widely and there has been no real trend in either direction that is well-established. Voter approval in one state 10 years ago, and with multiple failed attempts since then in other states, hardly makes the case for a growing approval.
  • Many people, especially highly educated, nonreligious people, think that "physician-assisted death" is exactly the right way to go -- or to send off your unconscious mother.
What this has to do with highly educated or nonreligious people is unclear. It seems to be a dividing technique again, especially when "they" are thinking about doing this to Mom!
A careful reading of this statement demonstrates that every attempt should be made to avoid PAS/PAD. And the Academy did not reverse its opposition, it has a position of studied neutrality. Reversal would be an endorsement, which this is not. Most of this I see comes from the fact that you have a national organization has to provide guidance to professionals in Oregon (legal PAS) and in other states (illegal PAS). There is research to show that PAS happens regardless of legality, but adhering to state laws or working to change them should be the approach to take if you do not like the way things are now.
  • Have your doctor pull out your feeding tube or inject you with cyanide or do whatever fulfills your idea of death with dignity.
Now come on..."inject with cyanide?" That is really confusing the picture and equating that with stopping tube feeding is way too blunt for such a complex subject.
Misperceptions of medical language/approach.
  • ...whether I would want to be denied "artificial" food and water...
Nutrition by mouth is considered natural. By other routes is artificial (feeding tube, IV, etc). Artificial nutrition is not inherently endowed as good. It must be used appropriately.
  • ...being given 30 seconds in a busy lobby to read and sign a complex document...
True this is how the process starts, but quality medical establishments should take the time to address these with you after you have had time to review them. One should avoid making these decisions in haste or in a crisis when possible.
  • ..."right to die"...
An ambiguous term at best. It is really more of a wastebasket term to lump subtle and complex ethical issues. It is difficult to throw this term out in the open without really defining it for the reader as to the author's understanding.
  • Equating "good death/dying well" with the word euthanasia
These words all have very open meanings that have different understandings depending on circumstance and understanding. Good, death, dying, well are all common words with some overlapping themes. To suggest this is the secret medical code for 'hastened death' is disingenuous.
  • "Then, what you have to do is take him to a hospice. That's what we did with my mother. They'll put him on a morphine drip, and he'll be gone in a few days. They know what to do."
Her first hand experience with hospice care is tainted by a strangers comments that could be interpreted in many different ways. Good hospice care may involve morphine drips, but the majority of hospice care does not need this measure to provide comfort. The rule should be the right dose for the symptom. Besides no one ever notes the fact that hospices have a financial disincentive to hasten death, they are often paid per diem. And I have had many, many patients live well and long on opioid drips.
  • terminal sedation

Misperceived as sedating and then stopping food and fluids, when in fact most studies demonstrate that when this is enacted, the patient has often already stopped eating and drinking on their own.
  • It's not surprising that many people have reservations about theories of "dying well" that always seem to involve not staying alive...only 18 percent of Americans of all races had them...
She again uses the possibility of the public reacting against the establishment as the potential reason for not having living wills. The most common reason I encounter in my practice: No one likes to talk/think/discuss end-of-life issues. That is a pretty obvious one.

The opinion piece's good points.

Many people do not have living wills. So let us better understand the barriers and help them pick a decision making process that is right for them.

Impotency of living wills.
The process to make them and keep them up to date and readily available is a systems issue not a failure of the idea of a living will. Often the language is ambiguous, and the form is not updated frequently. POLST may be a way to fix some of these issues, but I am sure Ms. Allen would find some objections to that.

Living wills seem to only indicate what you don't want.
That is true but that is a reaction to the perceived over-treatment by the medical system and how living wills were hatched in the first place. But there is no reason why a living will cannot say that your preferences are to be as aggressive as possible and to stop asking me about death and dying.
DPOA's are good things to have. They allow flexibility, but they also have limits and fallibilities that Ms. Allen neglects to highlight. Often they are signed without the most important discussion about wishes. Even when that happens surrogates may make different decisions.

She did not use the word narcotic. Pet peeve of mine.

I just want to die in peace
. I think most people would agree with that. And that is what palliative care is about. Meeting you where you are at.

Picture Credit: Christian Sinclair, UC San Diego, "Bear"

Wednesday, October 17, 2007 by Christian Sinclair ·

Etanercept for cachexia; Pathologic fracture prognosis; "Euthanasia" understanding; & more

A few articles from recent issues of Cancer, and a couple of other things as well....

Cancer recently published the results of a randomized, placebo controlled trial of etanercept for cancer cachexia. Etanercept (Enbrel) is a tumor necrosis factor (TNF)-alpha inhibitor which is used for rheumatoid arthritis. Since there's good reason to believe cancer anorexia/cachexia is mediated, in part, by inflammatory cytokins including TNF the thought has been that giving patients TNF inhibitors may be beneficial. This trial looked at 63 patients (mean age 66 years, median survival ~160 days) with 'incurable' cancers, decent performance statuses (ECOG 2 or less), likely survival greater than 3 months per the referring oncologist, more than a '2.27 kg' weight loss in 2 months, and who perceived weight loss as a problem. They were randomized to 25 mg subcutaneously etanercept or placebo for up to 24 weeks, with a primary outcome of proportion of patients who had a 10% weight gain. The use of other appetite stimulants was discouraged but not controlled (a similarly small proportion of patients used megestrol in both groups). The authors did a power analysis, and also note that the study was stopped early due to poor accrual, and it's fair to say that the study was under-powered.

Despite being under-powered the results were completely unimpressive: no one gained 10% of weight in either group, and etanercept had no other statistically significant effect on weight overall, quality of life, appetite, or survival. Side effects weren't too different either. (Curiously, rates of anemia and thrombocytopenia were lower in the treatment arm, and the authors wonder if the TNF blockade was affecting those processes.)

So - another negative controlled trial for cancer cachexia. Given the complextiy of the syndrome, I'm wondering if single agent trials will ever be effective. Maybe it requires inhibition of multiple cytokines simultaneously.... To show that, however, would be astonishingly complex (and risky with all the polypharmacy, etc.). One wonders if 'curing cancer' will be easier in the long run....

I've made my skepticism about the benefit of appetite stimulants in advanced cancer known on this blog before, so I'll point out it's a coincidence and not me being opinionated that the same issue has a case series and review warning of adrenal insufficiency & hypogonadism in cancer patients taking megestrol acetate.

Cancer also has an article about prognosis and pathologic fractures. The data come from retrospective analyses of data from 3 controlled trials looking at zoledronic acid to reduce skeletal complications for cancer patients with bone metastases. This study, and presumably the 3 trials, were funded by Novartis (the manufacturer of zoledronic acid). It's quite a complicated analysis - limited by different patient populations in different trials, and difficulty in comparing prognoses between those who had fractures and those that didn't (e.g. the concern that those who had fractures were sicker at baseline making it inappropriate to compare their survival with those that didn't have fractures). Anyway, their analysis suggests that for breast cancer and myeloma pathologic fractures are associated with worse prognosis (but not for lung cancer - prognosis was poor all around for this group and not modulated by sustaining a fracture). So, for you prognosis junkies out there (ahem, Christian), there you go.

The article has a 'zoledronic acid hooray' tone to it, and the concluding language (as well as the abstract) intimate that preventing fractures will save lives (and so, by extension, will zoledronic acid). This conclusion doesn't seem supported by this analysis; the conservative interpretation would be that fractures are associated with worse survival, not that they cause earlier death, and I found the conclusion pretty frustrating. Anyway, it's not as if the prevention of a fracture is an outcome whose importance is debatable.

And finally there's a review on psychiatric disorders in advanced cancer. It's a general, practical review of the prevalence and treatment of various psychiatric problems in cancer (depression, anxiety, even personality disorders): another good one for the teaching file. What stopped me in my tracks were these sentences about the role of the physician:

"By listening, the physician provides the patient a chance to be heard and understood, explore fears and concerns, mourn losses, articulate hopes and final wishes, and share the unique meaning that illness has for each individual. Listening reminds the patient that the physician is not too scared, too tired, or too busy to be present, and demonstrates that the patient, who may be diminished by illness, is still valued."

I wish I wrote that.

There's also a piece I just stumbled across in a recent Canadian Journal of Public Health about public (mis-)understanding of concepts like euthanasia and treatment withdrawal. I've only (yet) been able to read this paper in abstract form (it's from Quebec & it's unclear if these were French speakers in the survey) but its findings are supportive of the idea that at least part of public support for euthanasia is due to confusing it with withdrawing life-prolonging treatment. I know I've had to correct misunderstandings many of my well-educated and worldly friends and family members have had about this. A quote:

"Support for euthanasia (69.6%) was less prevalent than for treatment withdrawal (85.8%). Respondents who failed to distinguish between euthanasia and treatment withdrawal or withholding treatment in hypothetical scenarios were more likely to support euthanasia in public opinion poll questions. Furthermore, there is a significant relationship between opinions about the acceptability of euthanasia and inaccurate knowledge of the nature of euthanasia."

Finally, and only a little off-topic, NEJM has a brief and fascinating look at the history of stem cell transplantation as this is (sort of) the 50th anniversary of the technique (free full text here).

by Drew Rosielle MD ·

Sunday, October 14, 2007

Submissions for Grand Rounds V4.5 for Oct 23rd

Pallimed will be hosting Grand Rounds, the weekly cream of the crop of medical blogs, on Tuesday, October 23rd. Many thanks to Nick Genes for the offer and for keeping Grand Rounds going for so long.

The theme for this edition of Grand Rounds will be "Prognostication." Since predicting future medical outcomes gets a back seat to diagnosis and therapy in most matters, I hope that prognosis can get a little more attention across all medical specialties. And this theme is open to situations more than just life and death, that we often tackle here at Pallimed. When is this wound going to heal? How long is this colonoscopy going to take? How many more times do I have to tell you to stop smoking? You get the point. It does not matter if the prediction was right or not; we are not keeping score here.

Send the submissions to ctsinclair @t gmail d0t com by Sunday Oct 21 @ 11:59 pm (EST). Please put "Grand Rounds" in the subject line.

Picture courtesy of user aunty vanya

Sunday, October 14, 2007 by Christian Sinclair ·

Friday, October 12, 2007

CHF & hospice; Hyponatremia & prognosis; Benzos for grief; Hip fractures & prognosis; Back pain; NYT

Several items from Archives of Internal Medicine (& more).

To begin with are two about heart failure. The first is a look at characteristics of patients hospitalized for heart failure who are referred for hospice care. The data comes from a large, nation-wide, prospectively gathered database of hospitalized heart failure patients, and the researchers compared characteristics of those patients discharged to hospice care (1.6% of the 180,000 hospitalizations) with the rest of the patients. The results are pretty straightforward: those enrolling in hospice tended to be older and sicker, and have more cancer (making one wonder if they were being enrolled in hospice for end stage heart failure or cancer); they also received less invasive/aggressive care during their index hospitalization (inotropes, cardiac catheterizations, etc.). More notable is that the rates of hospice referral increased over time (from tiny to tiny) and that rates of hospice referral varied widely across the hospitals (0% to 9% of discharges). This large variation likely reflects a total lack of consensus (or awareness...) amongst clinicians about which heart failure patients are appropriate for hospice care.

The second is a look at the prognostic value of persistent hyponatremia in heart failure patients. The data come from a large, randomized trial looking at hospitalized heart failure patients with low ejection fractions ( less than 30%) and class IV symptoms (dyspnea at rest). Persistent hyponatremia was defined as a [Na] less than 134mEq/L the entire hospital stay (424 people total in the study; 103 had baseline hyponatremia; 71 had persistent hyponatremia). Persistent hyponatremia was associated with poorer outcomes in several analyses. As far as numbers go: at 6 months 31% of the persistent hyponatremia patients were dead compared to 16% of the normonatremic patients. Notably, 28% of the patients who presented with hyponatremia that was corrected were dead at 6 months also. Low sodium levels have long been known to portend a worse prognosis in a variety of disease states, including CHF, but it's nice to see some contemporary support for this, as well as some 6 month mortality rates. It's hard, however, to know how to generalize these data: these were hospitalized, very sick patients, who however were game to having pulmonary artery catheters placed (this was what the randomized trial was about)--I don't know what to do with that. My gloss would be: yes hyponatremia is a definite poor prognostic sign but I wouldn't put too much weight on the figure of 30% 6 month mortality.

There is a very brief research 'commentary' by some researchers who were looking into physician prescribing of benzodiazepines in the elderly. This commentary was about their unanticipated finding (which they weren't even particularly looking for) that benzos are liberally prescribed to the elderly for acute grief. They also noted that their research into long-term benzodiazepine users (users, not necessarily abusers) suggested that about a fifth of them were initially prescribed them for acute grief.

They note:
"We found this extraordinary for several reasons. First, there is no evidence base supporting this practice or any medication for either normal grief or complicated grief, which has duration of at least 6 months by current consensus. Second, given how common loss is in the general population, this practice might unnecessarily expose large numbers of people who are having normal reactions to loss, including high-risk populations such as the elderly, to inappropriate treatment. Third, based on the posttraumatic stress disorder literature and because posttraumatic stress disorder may be highly comorbid with complicated grief, it is theoretically possible that benzodiazepines might actually lead to worse outcomes by impeding the normative grieving process, especially at higher doses. In one small randomized controlled trial, low doses of diazepam neither helped nor hindered the course of bereavement. However, those who received diazepam had significantly less resolution of sleep problems compared with the placebo group."

(& Dr. Sean Marks alerted me to commentary about this on a NY Times blog.)

The final one is about the natural history of sustaining a second hip fracture, which contains some prognostic data. It comes from the Framingham Study, a large, prospective, decades long observational study of people in & around Framingham, MA which was designed to look at risk factors for heart disease long-term. The data generated also provides opportunities for looking at risk factors for and outcomes of many other diseases. In this analysis, the researchers looked at patients who sustained a hip fracture (481 in all, median age 81 years) and followed them out and looked at 1) rates of second hip fractures , 2) mortality, and 3) a bunch of other things. It should be noted that they included hip fractures from motor vehicle accidents and other injuries but these represented only a tiny percent of the cohort. There was a median of 4.2 years of follow-up for those sustaining an initial hip fracture (which makes one wonder if the median survival of those patients was ~4.2 years) and ~15% went on to have another fracture.

Survival findings: "15.9% of subjects died within 1 year of an initial fracture, and 45.4% of subjects died within 5 years of an initial fracture. Following an initial hip fracture, men had greater mortality compared with women, particularly during the first year of follow-up (24.4% in men vs 13.8% in women, P = .03). The 1-year and 5-year mortality following a second hip fracture was 24.1% and 66.5%, respectively."

I'm mentioning this because when I was in training (med school & residency, not palliative medicine training) I was told several times that the median survival after a hip fracture was 6 months (and I've heart it repeated a few times since) - a finding which is clearly not supported by this study. I was double struck by this when I noticed this e-pub of a paper in JAGS about survival getting worse recently for patients who have hip fractures (this is a Danish study using a national administrative database). One year survival (despite declining a little in this cohort over the decades) was in the ~72% range. Either way, it would be hard to see how median survival could be 6 months in these populations.

So I'm curious: has anyone else heard this statistic? Or used it? And where does it come from? (Yes I'm too lazy to lit search it.) The studies underlying that figure may be legit - the patient population looked at might be quite distinct from these large, community/nation-wide databases - but I'd like to know....please leave a comment.

Annals of Internal Medicine has published guidelines (from the ACP and the American Pain Society) about the evaluation and treatment of low back pain (consensus recommendations here; review of nonpharmacologic treatments here; review of pharmacologic treatments here). I'm not going to comment on these much other than to say together they represent a wide-ranging summary of the evidence and while they demonstrate the astonishing breadth of therapies evaluated (and found to be somewhat effective for low back pain) they also demonstrate the reality that it is an astonishingly complicated phenomenon with no really good treatment. Everything reviewed in these tomes has been shown to be, at best, 'mildly' or 'moderately' effective.

4 notable articles recently from the NY Times (now freely and indefinitely available online). First is another piece about inadequate availability of analgesics in 'poor' countries, and an associated article about the WHO's planning document on care of the dying. Third is a profile of a 59 year old woman with sickle cell disease which talks about the evolution of recognition and treatment of the disease, as well as pain control for it. Finally is a very sad article about the problems older gay couples face as they age, particularly when they have to go through transitions in places of care or residence; many feel forced to 're-enter the closet' when they enter a nursing home.

Friday, October 12, 2007 by Drew Rosielle MD ·

Sunday, October 7, 2007

Endobronchial valves; Going home; Advance directives; Uremia; 'Unfortunate'

BMC Pulmonary Medicine has an article about the 'endobronchial valve for emphysema palliation trial' (VENT) trial (free full-text). (Yes, that's the endobronchial Valve for Emphysema palliatioN Trial.) The valves are placed bronchoscopically in select regions of the lung (ones with large bullae for instance) and allow air to exit but not enter. This is being proposed as a less-invasive and thereby less-morbid equivalent to lung reduction surgery. (The reason these are thought to be helpful is that moving air in and out of a few large, emphysematous bullae - instead of millions of tiny, healthy alveoli - wastes a lot of energy and doesn't contribute meaningfully to gas exchange.) The trial is an open, randomized, controlled (medical management) trial of advanced COPD patients. The primary outcome was FEV1 and 6-minute walk test, although quality of life was measured also. The BMC article itself is actually just about explaining the protocol and rationales behind it, but it is a nice introduction (with pictures) of the concept. (It also has a nice discussion, for you EBM fans out there, of the problems of doing a blinded, sham-procedure trial and why they decided against it.)

Despite the fact that the BMC paper is just being published, the trial is over and its results have apparently been presented publicly: Medscape article about the conference presentation here (you need a free logon to access Medscape articles). Apparently the results were positive although the clinical significance of them is being debated. The Medscape article mentions that they found that the valves improved quality of life but (of course) no further info is given (qol measured how? actual magnitude of qol improvement? etc.). That said - if this pans out - given that we have very few interventions to actually make people with advanced COPD feel better - this may be an important new modality for these chronically ill and very symptomatic patients. I'm remaining agnostic about this for the time being, however.

(Images are bronchoscopic pics of open and closed valves from the BMC open-access article.)

Postgraduate Medical Journal has a discussion of 'palliative' patients not being able to go home, even when they want to. Some elements of it are specific to the UK/NHS system, but most aspects of the article would be recognizable to a world-wide audience. It talks a lot about the ethics of allowing or not allowing (facilitating or not facilitating) what we consider an unsafe discharge to home, balancing patient autonomy, 'choice,' etc. One of the interesting contextual points it makes is that palliative care/hospice rhetoric often promotes (i.e. sort of promises), 'choice,' and dying at home and makes these suggestions instead:

'Despite the benefits that follow from offering choice, there are times when patients have fewer choices than they have preferences. (Patients would prefer not have a terminal illness, but do not have any choice about this.) If professionals are not clear in their thinking as to this distinction then they may be left feeling uncomfortable when what are perceived to be choices (but are actually only preferences) about place of care are not achieved. The role of healthcare professionals is to facilitate those choices that do exist, and to help patients understand why other preferences are unachievable.'

BMJ has been full of little nuggets lately and here's one more about furthering the legal weight of advance directives in the UK. This has to do with some specifics of UK policy/practice, and what is described seems very reasonable:

'Advance directives or "living wills" to refuse treatments are already binding under common law, but the act sets up a statutory framework that aims to give doctors and patients greater certainty. Patients will not be able to demand any particular treatment or require a doctor to do anything unlawful. NHS guidance on ADRTs says it should be made clear to a patient that artificial nutrition and hydration are considered treatment, while basic care, such as giving food and water by normal means, is not.'

I particularly appreciate the bit about not being able to demand any particular treatment. This may vary considerably by state in the US, but in least my state, the way the living will & health care proxy forms are set-up, it can imply to patients that they can pre-specify what they want done (not just place limits on what they don't want done). And while this may not be legally binding, it can give confusing messages to patients, and occasionally causes a lot of headaches.

NEJM recently has a review on uremia that was really interesting. Much of it has to do with the pathophysiology of uremia (and dialysis modalities that are being developed/tested to try to improve the effectiveness of dialysis). It also talks about the 'residual syndrome' and the reality of advanced debility, frailty, and poor health-related quality of life that many dialysis patients have and how dialysis itself, while life-prolonging, does not necessarily restore function/health for many:

'The 5-year survival rates between 1995 and 1999 were under 35% for both hemodialysis and peritoneal dialysis. Patients treated with dialysis are hospitalized on average twice a year, and their quality of life is often low. Not all of the illness of a patient undergoing dialysis can be ascribed to uremia. Indeed, the evolution of dialysis has made the effects of uremia more difficult to distinguish, since the severity of classic uremic symptoms is attenuated. Instead, patients undergoing dialysis now have a new illness, which Depner aptly named the "residual syndrome." This illness comprises partially treated uremia; ill effects of dialysis, such as fluctuation in the extracellular fluid volume and exposure to bioincompatible materials; and residual inorganic ion disturbances, including acidemia and hyperphosphatemia. In many patients, the residual syndrome is complicated by the effects of advancing age and systemic diseases that were responsible for the loss of kidney function.'

The same issue also has a personal piece about codes & physician emotion (free full-text). I particularly struck by the author's mention of hiding emotion behind the word 'unfortunate':

'Often we kept those feelings to ourselves, rarely giving voice to them as we proceeded through far more challenging situations during our clerkships — a newly diagnosed lung cancer, a 2-year-old with an inoperable and therefore fatal brain tumor, a young man with quadriplegia from diving into shallow water. We discussed the medical management and the complications in detail and with intense care, but we could not give voice to the feelings these events evoked, often reducing them, in the formal case presentation, to the single word "unfortunate."'

Sunday, October 7, 2007 by Drew Rosielle MD ·

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