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In an effort to better understand what guides people to practice in hospice and palliative medicine, we are beginning a new series called 'Origins' featuring doctors from different primary specialties.  Obviously the majority of physicians in the field are from Internal Medicine and Family Medicine (as evidenced from the first year of board certification in 2008.)

The first edition of Origins is written by my colleague Pam Harris, MD who is an associate medical director with me at Kansas City Hospice and an ordained minister.  She recently passed her Physical Medicine and Rehabilitation boards and is board certified in HPM. 


To contribute to an upcoming Origins blog post please email me at christian@pallimed.org. We need representatives from any of the following specialties: psych, neuro, anesthesiology, radiology, EM, surgery, OB/GYN. 

Take it away Pam!

Thanks to my friends and colleagues at Pallimed for the opportunity to launch its “unconventional” guest blog event!

“Why would a Physical Medicine and Rehabilitation (PMR) physician specialize in hospice and palliative medicine (HPM)—isn’t that the exact opposite of what you were trained to do?”

I get that question a lot, especially from my PMR colleagues. My dearly beloved mentor looked at me with disappointment when I went to seminary [as those great theologians, the Grateful Dead, once said, “What a long strange trip it’s been”], but he looked at me with absolute unbelief when I told him that I was going to work for hospice. It was almost as if he believed that all my training to that point had been a waste of time.

On the contrary, PMR physicians are perfectly suited for HPM! Here are the top 5 reasons why:

1. Physiatrists always bring friends. PMR was developed as an interdisciplinary field, complete with team meetings.
2. We look comprehensively at the patient and family in the entire community and psychosocial context. We can’t treat patients in isolation from their support system/caregivers and we can’t treat the patient/family unit without considering their larger environment.
3. Physiatrists are experts at musculoskeletal and neurologic physical diagnosis, pain management, bowel and bladder programs, skin care/wound management, and community resources to support our patients and families. Sound familiar?
4. We’re all about improving quality of life and maximizing function. Even at the end of life, there is room for targeted therapies that help patients do the things that they want and need to do as long as possible and that teach caregivers how to care for patients in ways that protect both the patient and the caregiver.
5. Physiatrists frequently provide care to patients with progressively degenerative and disabling conditions, adjusting treatment plans as diseases progress and patient abilities change. A Physiatrist can help provide valuable prognostic information to patients and families to help them make informed decisions about their therapy options.

I believe the biggest barrier to physiatrists considering practices in HPM is the false belief that rehabilitation and palliative care are opposites. (We rehabilitate until we can’t rehabilitate any longer and only then do we consider palliative care.)

Newer concepts of HPM look at palliation as an integral part of care, with the proportion of curative or restorative/rehabilitative interventions varying with the patient’s disease, goals, and preferences regarding care. There is an art as much as a science to navigating this spectrum of rehabilitation and palliation. It is OK to acknowledge that not everything is “fixable”, even with maximum therapies and treatment of mood disorders such as depression that might affect participation. If something is not working, it is OK to stop doing it and to re-evaluate goals/treatment plans. Not all patients, even those with excellent rehabilitation potential, want to spend their time and energy trying to achieve the goals we encourage them to adopt.

It’s important that we help patients balance their expenditure of time and energy against their likely payoff (e.g. likely function or choice of living arrangement), helping patients understand implications of their choices within their community and psychosocial support structure. Physiatrists are perfectly situated to help patients through this process.

I would encourage my PMR colleagues to consider HPM certification—tests this fall and in 2012 are available to candidates without fellowship training along an experiential pathway. You can find requirements on the official American Board of Physical Medicine and Rehabilitation webpage here. Contact your local hospices about opportunities for clinical practice experience—it could open new doors for your practice. After all, with all our experience, how can we help but grow up to be palliative care docs? ;)

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Last summer I had the distinct pleasure of hosting three medical students from Tongji University Medical School, Shanghai for a month elective in palliative care. The three students voraciously absorbed information about tending to patients with life-limiting illness - including communicating difficult news, negotiating goals of care, basic and complex symptom management. We reflected on the differences in practice and in palliative care medical education between UMass and Tongji U in Shanghai.

Yanjun, S., Changli, W., Ling, W., Woo, J., Sabrina, K., Chang, L., & Lei, Z. (2009). A survey on physician knowledge and attitudes towards clinical use of morphine for cancer pain treatment in China Supportive Care in Cancer DOI: 10.1007/s00520-009-0768-2

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A great supporter of hospice and palliative care related info, blogger/plastic surgeon/quilter, Ramona Bates hosts Grand Rounds (the general medicine one, not the palliative care one) showcasing the best of blog posts from the last week on her blog called 'Suture for a Living.'

She has a few palliative care related links in her Grand Rounds this week. My favorite being CancerDoc with his post "Denmark" about what one of his patients taught him.

Go support a surgeon who supports palliative care and find some other great blogs out there.

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I am very pleased to announce that Pallimed has officially been cited in the New England Journal of Medicine! (members only).

The letter to the editor was written by my colleague at the University of Kansas, Lindy Landzaat, DO (a 2009 Harvard HPM Fellowship grad) based on Drew's post about Continuous-Flow Left Ventricular Assist Devices (LVAD).  This came about because I knew of Lindy's interest in LVAD's since she had presented at the 2009 Case Conference in Austin on the topic, and encouraged her to write the letter after reading Drew's post.  The three of us worked on it over the next week with Lindy doing the bulk of the work.  It was submitted in mid-December and we got word soon after that it was approved for publication with a few minor revisions.

One important piece to include was a citation to the Pallimed since it really demonstrated the source of some of the viewpoints and allowed an expansion on the subject that a letter to the editor word limit would not allow.

Here is the sentence from the letter to the editor that was referenced:

Though left ventricular assist devices are increasingly helpful and reliable, they still represent a form of life support with a specific set of burdens and complications, particularly as patients die: difficult decisions for patients, families, and doctors surrounding planned device discontinuation; device failure; symptom-management issues; and coordinating end-of-life care that honors patients' wishes and values. 2

And here is how the citation looks:

2. Rosielle D. Rise of the machines. In: Rosielle D, Sinclair C, eds. Pallimed: a hospice & palliative medicine blog. (Accessed March 4, 2010, at http://www.pallimed.org/2009/12/rise-of-machines.html.)

(More on citing a blog in this Pallimed post. If you ever cite a blog it is always nice to leave a mention on the blog referenced.)


Now this is not the first time a blog has been cited in a medical journal (Geripal had a reference in Lancet in Sep 2009 [damn upstarts!]), but I am also hoping that it will not be the last.  This moment raises many important issues about the exchange of ideas and blogs:

• Transports information from blogs to the relatively insulated world of medical journals
• Gains increased awareness about palliative care issues by keeping them in medical journals via letters to the editors, editorials
• Reinforces blogging as a scholarly effort
• Increases awareness of journal readers that blogs are a credible source of informal and post-publication peer review
• Achieves formal archiving in the medical institutional memory of  important points brought up in blogs
• Allows blog readers a streamlined path towards increasing publications
• Crosslinks open access (blogs) with paywall access content

So earlier Wednesday night I spoke with Eric Widera of GeriPal and we have decided to start a workgroup to help help translate information from palliative care related blogs into academic journals.  This is a work in progress and open to any readers that would like to participate.  Some ideas of how it might work:

Any post on Pallimed or GeriPal (or another blog if you are interested) that cites a recent journal article is eligible.

• If you find a post that resonates with you and you want to write up a letter to the editor, just comment on the article and email the author of the post. (If you don't know who that is email me at ctsinclair@gmail.com)
• Gather the deadline, word count, submission instruction info for the cited journal
• Within a week after the post is up (or sooner if necessary) the final authors for the letter will be confirmed and work will proceed by email to submit before the deadline.

With enough effort behind this we could start a listing of letters to the editor or editorials that were seeded by a blog post and demonstrate the effort of the crowd as a whole to contribute to medical information exchange.  But you must be the catalyst.  We have nearly 3000 subscribers, so if only 5% of our readers were interested in doing this we would have 150 people nearly continuously as a loose group working on letters.  That could be huge!

What we need from you:

• More ideas on how this could (or could not) work
• Your willingness to contribute and write a letter based off already formed themes.
• Your desire to be first author on letters to many top notch journals
• A cool name for this workgroup/project including some of the following words or phrases: blogs, social media, translation, stupendous, project, workgroup, GeriPal, Pallimed, awesome,add your own.

So are you in?
Landzaat, L, Sinclair, CT, & Rosielle, D (2010). Continuous-Flow Left Ventricular Assist Device New England Journal of Medicine

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• Offered out-of-hospital palliative care: 82%, 75% opted in. Satisfaction rating of very good or excellent for out-of-hospital palliative care: 74%
• 47% received cancer-directed therapy in the last month of life, with 33% experiencing significant side effects. The perceived goal of cancer-directed therapy was 33% palliation, 12% extending life, 12% ensuring everything had been done. Children who received cancer-directed therapy during the end-of-life period suffered from a greater number of symptoms than those who did not receive treatment (p = 0.03).
• 63% had time to plan death location, of these 89% preferred to have the child die at home, and of these all except two died in the planned location; 61% died at home. Of those children who died in-hospital, almost 25% died in an ICU. Life-sustaining treatments were pursued in only 8%.
• Descriptive statistics were presented about symptoms, suffering, treatment and treatment success. It was notable that there was a significant gap between symptom treatment and treatment success. Despite this, 83% reported the death of their child was somewhat or very peaceful.

Heath JA, Clarke NE, Donath SM, McCarthy M, Anderson VA, & Wolfe J (2010). Symptoms and suffering at the end of life in children with cancer: an Australian perspective. The Medical journal of Australia, 192 (2), 71-5 PMID: 20078405

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[Editor's Note (C.S.) - I would like to introduce Suzana Makowski, MD, MMM, FACP as the newest blogger to the Pallimed team. Suzana and I go back a few years when we first met at the AAHPM Annual Assembly in New Orleans. She has tremendous enthusiasm for hospice and palliative medicine and her insights reach beyond the traditional evidence-based medicine approach. She is the newly elected co-chair for the Humanities and Spirituality SIG for AAHPM and the founder of the Lois Green palliative faculty development initiative. You can also find her on Twitter if you are so inclined (@suzanakm). She will be blogging on the main blog and occasionally on the Arts and Humanities blog also. Please help me in welcoming Suzana!]

Thank you Christian! And of course to Palladius and to Patrick for welcoming me to Pallimed with a rich choice of articles to share. Somehow it seems fitting that my first post refer to an article from Canada – now that Vancouver has been warmed up by the Winter Olympics just a year before that city-of-my-dreams will be swarmed by thousands at the AAHPM assembly next year. Well, in full disclosure, the study was not conducted in Vancouver, but rather in Ontario.

During this time, when the House and Senate continue to debate healthcare reform, when policy-discussions surrounding palliative care are challenged by the tension between the quality and quantity of care, an article emerges from CAMJ (with free online full pdf access) that challenges us to rethink how to focus our resources for patients with serious, end-stage cancer. Taking the IOM’s definition of quality care as “the right care at the right time in the right place,” this article explores how and why patients with serious cancers and their caregivers seek help through the emergency rooms and boldly asks the question whether this is the best care the patient could be receiving.

The point of transition from home to hospital is usually the emergency room. It is a place, as a patient of mine admitted for severe breathlessness, in hospital with a chest tube explained, is never a place you want to spend much time, especially if you aren’t feeling well. “I try anything to avoid waiting hours first in the waiting room, and then on a thin mattress in the hallway or room whose walls are build by wisps of curtain, sometimes waiting for hours in close proximity with strangers.”

We know already that most people want to be at home with family at the end-of-life, we also know that most end up in hospital or institution. We have hypothesized that increasing access and enrollment to hospices might help people meet this goal. This article seeks to understand how frequently and why patients with end-stage cancer choose to go to the ER.

So this begs the question… what percentage of patients with cancer visit the emergency room during the last 6 months and 2 weeks of life?
Of the 91,561 patients who died of cancer between 2002 and 2005, 84% of patients visited the ER in the 6 months prior to death and 34% of patients visited in the last two weeks before death.  They outline the principle reasons for emergency room visits: primary cancer (mostly lung cancer), uncontrolled symptoms (pain, dyspnea and other non-pain symptoms), caregiver fatigue, and infection.
Top reasons for ER visits among patients with cancer:

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**Warning long post but good info!**

Well now that I am starting to get back to a normal speed I wanted to start posting some of the slides and general feedback from the special session on Social Media at the Annual Assembly in Boston on March 5th.

As we mentioned in the earlier post, we were all excited and impressed with the over 140 people who showed up. Honestly we were not sure what to expect, but at one point thought we would have more people on the panel than in the audience. So more than 20 would have been great!

First here are the results of the survey taken before the session. We also took a poll of people that were at the session and about 40% self-identified as beginner users of social media and another 40% identified as intermediate, the rest we assume are advanced or people who never raise their hands when asked questions at conferences.

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For long-time readers of Pallimed, it would be obvious to most of you that palliative care is important enough to require dedicated specialized instruction to ensure the highest quality symptom management, skilled patient and family communication and balanced discussions of transitions in goals of medical care.

One of the web's more popular doctor bloggers, the anonymous* Dr. Lucy Hornstein (aka #1 Dinosaur - her blogging pseudonym), recently posted an entry titled: Palliative Care: An Unnecessary Specialty.

Now before you get too mad or defensive (like I first did), go read the post and the comments.  She is a family medicine doctor and the main thrust of the article (despite the provocative title) is that all doctors and especially primary care doctors should be skilled in palliative care.  A lot of the arguments come down to the frustration over too much specialization. An excerpt:

Excuse me: why do you need a brand-new "Team" to treat symptoms and talk to families?

True palliative care -- the management of symptoms -- is part and parcel of everyday medicine. Itching; nausea; constipation; pain. Work them up to make sure there is no serious underlying problem, of course, but for crying out loud, don't tell me you now need another specialist to actually come TREAT them! This is fragmentation of care taken to outrageous extremes.

I would agree that palliative care is practiced by many good clinicians (primary and specialist) every day whether they call it 'palliative care' or not.  In fact this is one of my main teaching points to students and colleagues about the ubiquitous (and not foreign) nature of palliative care.  I applaud the many health care professionals who focus on alleviating symptoms, talk with patients and families in a way that is open and clear, and effectively understand the patient's values to help in transitioning goals from curative to palliative at the right time for the patient.

But there are a lot of patients and families who are not getting these services whether the case is simple or complex.  Thus the field of palliative care was born.

And the funny thing about this post is...#1 Dinosaur likes palliative care so much, she is thinking of becoming a hospice and palliative care doctor.

(And a quick side social media side story.

• I saw a Tweet from Dr. Scott Lake (@doclake): This blog will make u mad "Palliative Care: An Unnecessary Specialty" http://bit.ly/cCH48U hoping someone more eloquent than I will respond
• I replied on Twitter: RT @doclake This blog will make u mad "Palliative Care: An Unnecessary Specialty" http://bit.ly/cCH48U "I haven't read it yet & already mad" 
• I read the blog post and using 'Share This' connected to my Gmail account was quickly able to email it to Drew Rosielle, Steve Smith (AAHPM CEO) and Eric Widera (GeriPal) (all on Twitter, but I knew they might see it faster this way)
• Total time to now: 50 seconds
• I commented on the blog post (5 minutes)
• Meanwhile...Steve Smith had contacted Laura Davis (at AAHPM) who got in touch with Sean Morrison (President of the AAHPM) who wrote a great comment less than an hour after I first read about it.

Hopefully this illustration of how the networks connected to pass this information is helpful to see why we need our networks to be full, diverse, integrated and intact before we actually need them.  See you on Twitter.)
*Late edit 3/19/2010 Apparently she was once anonymous and now revealed since she wrote a book.

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St. Patrick's day is good for celebrating your Irish heritage or fondness for food coloring, but it may have a new tradition, the release of major Palliative Care articles. Three major articles came out this week. Today JAMA published "Availability and Integration of Palliative Care at US Cancer Centers", yesterday the Archives of Internal Medicine released "Cancer and the Media: How Does the News Report on Treatment and Outcomes?" and on the 15th CMAJ released "Why do patients with cancer visit the emergency department near the end of life?"

So why the St. Patrick's day logjam of articles? Some may say it is mere coincidence, but I think there may be some meta-meaning here. By the power of Grayskull Wikipedia I found that St. Patrick is very likely two different people, one of which is named Palladius...very similar to 'palliative'...which is why I am sure the editors of these three journals got together to plan this bounty of articles. (I guess the New England Journal of Medicine missed the conference call). We will see if next year the same thing happens. Enough conspiracy talk...

This Archives of Internal Medicine study by Fischman, Have and Casarett shines a light on the bias present in the media towards the 'fight' against cancer. (other good blog posts on words used in cancer: Drew Rosielle on 'Hope' and GeriPal on 'fighting cancer')  The researchers looked at 8 newspapers (Chicago Sun-Times, Chicago Tribune, Daily-Herald Chicago, New York Daily, New York Post, New York Times, Philadelphia Daily News , Philadelphia Inquirer) and 5 magazines (Newsweek, Parade, People, Redbook, Time). (What no Washington Post or Cosmo?)

The main points in the articles that were coded if they were mentioned were:

• Survival
• Mortality
• Aggressive/curative
• Treatment failures
• Adverse events
• Palliative focus

The researchers found a very significant bias towards reporting cures/survivors (32%) over deaths (8%) and sadly only 2% that mentioned both. Also they found that adverse events and treatment failures were rarely reported (both less than 30%).

And of course the result you have been waiting for, 11 articles out of 436 (3%) mentioned aggressive and pallaitive measures and only 2 (two, dos, deux, zwei!) of the articles focused exclusively on end of life care exclusively. Well the researches only searched from 2005-7 and so they missed the whole past year of New York Times articles we have been writing about. Still it is shocking in 'cancer focused' articles only 0.5% mention end-of-life care exclusively?!

Pallimed was initially focused on EBM style analysis of palliative care articles, but we have expanded our scope to report on palliative care in the media also, and this study justifies the importance of getting the story about good palliative care into the main media news cycles. It is not just enough that there are articles about cancer treatments (mainly read by cancer patients and their families) or articles about hospice or palliative care programs (read by hospice and palliative care staff and families with hospice experience.) We need articles that combine the two so people are equally exposed to the balance of treatments that exist out there. Few patients or families facing cancer diagnoses will choose to read the 'hospice is valuable' headline when juxtaposed with a 'new cancer treatment' headline.

But it is important to understand the view of the journalist and editors as well. 'New cancer treatment' headlines may sell more copies than 'hospice is valuable' headlines. Also a new treatment being available is news because it is new, different, interesting. Having articles about how people have poor survival with a cancer diagnosis is not new, different or interesting. Palliative care and hospice organizations need to make sure the journalists and editors hear the great stories we see every day in our work. The human interest perspective is very powerful. Some hospices are better at connecting with the media than others. Maybe it was time we all had a lesson in how to best interact professionally with the media.

For reference I have uploaded a slidedeck I gave at the NHPCO conference in 2007 titled: Working With the Media: How to Reach the Widest Audience Possible. It is embedded below.
If you know of any other good media resources for medical professionals please comment below.  Hospice Foundation of America also posted about this today.

Fishman, J., Ten Have, T., & Casarett, D. (2010). Cancer and the Media: How Does the News Report on Treatment and Outcomes? Archives of Internal Medicine, 170 (6), 515-518 DOI: 10.1001/archinternmed.2010.11

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The third Palliative Care related article released for St. Patrick's (Palladius) day is a article that speaks to what many of us in the field know already:

But as the editor-in-chief of the Lancet has said: "It is not true, until it is published." Well JAMA has published a little bit of truth with the article: "Availability and Integration of Palliative Care at US Cancer Centers."  We have already known from CAPC data about a variability in access among states. This data helps underscore the variability in palliative care services, staffing, education and research at major cancer centers in the US.
I won't belabor the data here as it is relayed well in the abstract. But a few things impressed me about the study. It made a strong effort to differentiate between the simple question of 'Do you have a palliative care program?' which in a few institutions I have seen consists of a well stocked brochure rack and a single staff member (usually a nurse) who has 20 other job responsibilities that are prioritized by the administration above palliative care. Instead the authors focused on the structure, process and outcomes (also known as a Donabedian tripartite division, but of course you already knew that.)

Also a question to cancer center executive about barriers to palliative care seemed to be somewhat contradictory to other findings. Thee highest rated barriers (around 50-60%) were:

• limited institutional budgets
• poor reimbursement
• limited trained palliative care staff

despite 89% of cancer centers surveyed claiming to have palliative care programs. And conversely very few center executives (less than 10%) reported the following as barriers:

• limited palliative care needs
• lack of evidence for palliative care
• palliative care may increase mortality
• palliative care may affect national rating
• palliative care available but not utilized

So if I understand this right, 89% of cancer center executives have palliative care programs with staff who get paid from the budget but the around 60% feel the biggest barrier to getting palliative care access is that there is no budget/reimbursement or staff?

Couldn't be the culture of cure (see the media study), or the fact they are a tertiary referral center focused on the 'save'? Or the drive to get more patients enrolled in experimental drug trials which is a major source of funding/prestige? Or that palliative care may still not be well integrated into the culture?

I'm merely speculating here, but I think there is a juicy qualitative/anthropological study in this data.

One last thing...only 57% of NCI Cancer Centers had board certified palliative medicine physicians. And the data was collected in 2009. Come on people get board certified in hospice and pallaitive medicine this fall.

(Image from Funnycancershirts.com)

David Hui, MD, MSc, Ahmed Elsayem, MD, Maxine De La Cruz, MD, Ann Berger, MD, Donna S. Zhukovsky, MD, Shana Palla, MS, Avery Evans, Nada Fadul, MD J. Lynn Palmer, PhD; Eduardo Bruera, MD (2010). Availability and Integration of Palliative Care at US Cancer Centers JAMA, 303 (11), 1054-1061

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I couldn't wait until next month's palliative care grand rounds and so I had to post a link to each of these three wonderful blog posts to make sure you knew about them.

One from Joanne Kenen at The New Health Dialgoue from the New America Foundation:



In the article "This is Why We Need Palliative Care" Joanne comments on an article in the journal Health Affairs called "Shock Me, Tube Me, Line Me." An exceprt from her post:

End of life, he writes, can be done better. He’s correct. It can. "Give me a motorized wheelchair and a feeding tube if I need them, along with a tracheostomy to help me breathe and dialysis to filter out toxins. Those do nothing to stop a good mind and a strong spirit, while permitting both to overcome obstacles of blood and flesh." That's his opinion and his wish.

And two from GeriPal:

Patrice Villars a nurse practioner writes on "Maintaining Relationships: Stop Using the Words ‘Terminal’, ‘Dying’, ‘Hospice’, ‘Advance Directives’ and ‘Bereavement’ that Push Others Away"

An exceprt from GeriPal:

Our audience – patients and families – often don’t want to hear about dying. Death and dying is scary. Scary equals reactionary sound bites (i.e. death panels) that can dash any hope we have of reasonable reform and ongoing open relationships. (Ex. Advance directives talks with your physician = dying = fear = death panel = killing Granny and babies with Down’s syndrome). And guess what other words also equal death to our audience? Terminal. Advance directives. End-of-life. Hospice. Yes, and even bereavement. As long as the majority of our patients/families (to say nothing of our health care colleagues) associate palliative care with dying, they will not have access to our services.

Whoa, this is a lot to take in. You mean don’t use the words we have been using for decades to demystify the fear and denial of death in our culture? Isn’t this who we are? What about the movement we have come to birth, nurture and protect? Really, stop using those words?

11 comments on that one so you know it got people stirred up.

Brad Stuart, MD has an enthusiastic rallying cry for palliative care, hospice and health care reform titled: "Talking Palliative Care and Death: Get Up, Stand Up, Grow Up"

An excerpt:

"Why has dying become “radioactive?” Because Sarah Palin, PR master, made it that way with her Death Panel comment on Facebook. With one (more) semi-conscious crazy-ass remark she made “fear of death” the brand for all end-of-life considerations. And because optics is everything in our surface-obsessed culture, the world bought it. Are we following the world on this one? Uh-oh – I smell fear in the room. In fact a subtle scent of fear pervaded many of the meeting rooms in the Hyde Center last week. Did you notice?

and later...

Let’s talk bottom lines. Below are four fundamental reasons why I believe palliative care is critically important to health care reform. Forget radioactive. Talk about it. Just persevere. Outlast the resistance: this is a basic spiritual principle. Don’t be cowed. If the system is to wake up, that process needs to start in our own minds.

These three articles are as important to our field as any editorial written in JPSM, JPM, NEJM or JAMA.  And now you can make your voice heard go comment on these posts! Share them with your boss and team.

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If you want a better story about the potential for social media to be another tool for connecting people to each other, you won't have to look much further than Daniela Lamas' essay in the New York Times this past week.

As a medical resident she tells of a critically ill man using his laptop frequently in his ICU bed to update his Facebook status. Through a very simple exchange at the bedside, they became friends on Facebook, a new relationship which became much more complex.

The essay is short, but packs several difficult questions that Daniela elucidates very well in the essay. Read it and bring it to your team to see if they have had a similar experience. You may be surprised.

(Photo by Flickr user: brykmantra)

(By the way, I have started a new NYT label.  If anyone wants to help find all the NYT posts and help us label them, that would be great!)

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The Annals of Internal Medicine published a survey of hospices regarding their experience with patients who have implantable cardiac defibrillators. (See here for a brief explanation of these devices.)

The survey, conducted by Dr. Nathan Goldstein and colleagues, was directed at hospice administrators with instructions for that person to speak with the clinical staff. Of the 414 hospices that responded (a little less than half of those surveyed), 97% reported having patient(s) with ICDs, 58% reported having at least one patient who was shocked in the last year, and 42% of patients had the device deactivated.

Having a policy on ICD deactivation correlated with patients actually having the devices deactivated (73% of patients enrolled in hospices which had a policy vs. 38% in those without a policy; P < 0.001). The investigators include a sample hospice ICD deactivation policy in the web appendix. They rightly point out that it's impossible to know from this study whether the above correlation indicates a cause-effect relationship. Hopefully, further research is forthcoming. Policy/procedure + education seems to be the key. Without the former, you probably risk having a nurse not having the proper tools/avenues to do what she knows. Without the latter, you risk having inappropriate delays in identifying patients for deactivation and unused or improperly used magnet.

Envision a theoretical scenario: A person with hours to days to live is sent home from the hospital with an active ICD. The ICD has not discharged previously. A hospice nurse frantically calls the medical director during her enrollment visit at the patient's home (on the same day of hospital discharge) because the patient is comatose and has been shocked several times. Perhaps if a hospice policy dictates that nurses seeing patients with ICDs should always have a magnet, this type of scenario could be averted or easily managed. Maybe the magnets are inexpensive enough that every nurse should have one in their car (even though it's not an every day occurence?)

The main point of this case is that someone should have thought about deactivation before the patient was sent home. I hypothesize that most hospice patients with ICDs were hospitalized shortly before hospice enrollment. Regardless of whether this is true, I'll surmise that there is usually plenty of time for the cardiologist/internist/palliative care clinician to come up with a plan for ICD deactivation with the patient or family. Consideration of a hospice referral should trigger any of the above providers to readdress the goals of ICD and consider deactivation, but in many patients, it's appropriate to have this conversation well before hospice referral. So in an ideal world (we're working on it), it should be a non-issue for most patients once they are enrolled in hospice. Goldstein has previously identified barriers that may prevent physicians from bringing up this topic. Maybe hospice nurses don't share these barriers.

Does your hospital, cardiology service, or palliative care team have a policy or procedure for these discussions?

Even if every physician could manage this conversation, some patients would elect to keep the device programmed for discharge at the time of hospice referral. Because of this and the fact that the ideal world won't arrive soon enough, hospices should definitely get to work on their ICD policies and procedures.

Here's more information on deactivating an ICD. (Disclaimer: I have not independently verified the veracity of this information although I do have direct experience with deactivating the Boston Scientific ICD and the instructions listed seem correct- when this device emits a faint beeping sound after a magnet is placed over it, you know it is deactivated. A large household magnet can work but it's probably most effective to have an ICD magnet on hand.)

P.S. The Population-based Palliative Care Research Network (PoPCRN) assisted with the development of this survey. Check them out if you haven't heard of them. PoPCRN's director, Dr. Jean Kutner, just won an AAHPM Distinguished Service Award at the Annual Assembly. Congrats!

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Anesthesiologist Dr. Scott Reuben, a prominent pain researcher, has been convicted of falsifying medical research studies.

From BMJ article:

Dr Reuben’s published studies concerned use of multimodal analgesia (a combination of non-steroidal anti-inflammatory drugs and cyclo-oxygenase-2 inhibitors) to manage pain after surgery. The US Department of Justice, which prosecuted him, said that his papers suggested that "multimodal analgesia would be as effective for pain, promote long-term healing, and avoid some of the side effects associated with opioid therapy."

Sadly, he's authored 21 papers in the last 15 years per the BMJ article. Per a Google Scholar search, his name appears to be on many papers.

Here's an AP link in case you can't access the BMJ article.

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The 4 Questions:

"During your child's end-of-life care period, did you or a family member ever consider asking someone on the care team to give him/her or give you or the family member medications to intentionally end his/her life?”

"When your child was receiving end-of-life care, did you or a family member ever discuss intentionally ending his/her life?"

"Did you or a family member ask someone on your child's care team to give him/her medications or to give you or the family member medications to intentionally end his/her life?"

"Did a member of your child's care team give your child medications or did you or a family member give him/her medications to intentionally end his/her life?"

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19 (13%, about 1 in every 8) said they had thought about asking a doctor to hasten their child's death

13 (9%, almost 1 in every 10) actually discussed it with caregivers

5 (4%) explicitly asked a clinician for medications to end the child’s life

3 (2%) reported that their child’s life was intentionally ended with medication. In all three cases the medication used was morphine.

36% (49 of 136, about 1 in every 3) in retrospect, would have considered discussing HD under certain circumstances with a breakdown of scenarios given.

Uncontrollable pain was the most common circumstance to elicit a hypothetical consideration of HD. 15% would have considered HD for non-physical suffering.

Only 2 parents would have considered HD in circumstances not directly related to the child’s experience, (family witnessing suffering or medical costs).

94% endorsed proportionately intensive symptom management for a terminally ill child with uncontrolled excruciating pain, while only 54% did so in the case of coma; these results did not change when adjusting for race and religiousness.

50% (1 in every 2) endorsed HD in at least one vignette. 59% would agree with a physician discussing HD in the case of a child with terminal cancer in pain or coma.

Of the 19 who considered HD during their child’s EOL course 16 (84%) endorsed HD in vignettes.

In general, being white (not Hispanic) and being not very religious were associated with endorsing HD in vignettes.

Dussel V, Joffe S, Hilden JM, Watterson-Schaeffer J, Weeks JC, & Wolfe J (2010). Considerations about hastening death among parents of children who die of cancer. Archives of pediatrics & adolescent medicine, 164 (3), 231-7 PMID: 20194255