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by Michael Fratkin

People, Homo sapiens, in their current anatomic form, have wandered this planet for around 150,000 years. 93 Billion of us have been born, lived a while, and died. The era of “Modern Medicine” represents about 0.05% of human history and represents the context within which most people currently complete their lives. During this era we have extended our life spans through the application of beneficial medical technologies and improved the quality of living for many of us.

But have we improved the quality of our dying? Has the “medicalization” of aging and death relieved suffering or has it actually made it worse? Some would argue that in all of human history, people have never suffered as much as they do now as they complete their lives. In the past, people lived their lives exposed to the realities of birth, illness, and death. When they faced their own, they were cared for by family, community, and with healers that brought whatever tools they had to soothe, heal, and honor them in their passing.

We continue in the tradition of healers, functioning in a modern context using the tools at our disposal to soothe, heal, and honor. The modern tools and technology are as dazzling and imperfect to us as their tools were to our predecessors. In palliative medicine and hospice care we tend to use simple technologies to advance exactly the same goals while trusting the impact of personal engagement in the same way our forbearers did.

Topic 1: How has the “medicalization” of care for the very ill worsened/improved the quality of dying for human beings?

The economic and regulatory models, as well as the resulting documentation requirements have an enormous impact on the experience of people with illness and their families, not to mention the experience of those of us working in the field. Changes are underway that will radically alter the incentive structures that currently reward doing more TO people rather than FOR them. Value based payment models will align the payers and providers to share risk and savings to deliver on person-centered goals.

Topic 2: How can emerging payment models and future medical records serve to advance/obstruct the well being of people approaching death?

At ResolutionCare, we have taken off-the-shelf videoconferencing technology and applied it to the challenges of providing community based specialty palliative care and improving primary palliative care in rural Northern California. Our current solutions revealed themselves only when we got clear about our view of the soul of caring, then scanned our current environment for tools that would help us restore what had been lost.

Topic 3: What characterizes the soul of caring for you and your teams? What’s in the way?

The infrastructure of society is being transformed at dizzying velocity with information and communication technology. Global Community is no longer an abstraction; it’s a reality. Vast stores of information and artificial intelligence may free the human mind to from obsession with knowledge to its artful use.

Topic 4: If we don’t have to “know everything”, what does it mean to provide care and facilitate healing for people completing their lives?

Michael D. Fratkin is a father, husband, brother, son, and physician. He is the founder and director of Resolution Care, which brings Palliative Medicine to the community using the reach of technology coupled with a spirit of compassion.

What: #hpm chat on Twitter
When: Wed July 8, 2015 - 9p ET/ 6p PT
Host: Dr. Michael Fratkin (@ResolutionCare)

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by Christian Sinclair

This is part of an ongoing series where we share ideas that we would love to see implemented, but frankly don't have the time to actually accomplish. But if a smart person with a little extra time like yourself were to steal this idea, you might find an audience, and maybe some people might be willing to throw a few bucks behind it. Heck, if you can pull it off, we would love to help promote it or if you want to guarantee a built in audience we can officially make it a part of the Pallimed Network. 

Idea: Hospice and Palliative Care* App reviews

*This idea could really work for any specialty

Smartphones and tablets. Lots of people have them and we use them to play games, message our friends and family, participate in Tweetchats (shameless plug!), and oh yeah, to make us more productive at work.

I've been sitting on this idea for at least 5 years, when I created the first Pallimed apps for iOS and Android. To do some research, I started collecting apps from various hospice organizations to see how they used the technology.  I branched out from there to collect other health care related apps, that could be utilized by patients and families. Many of these apps have very few ratings, especially when compared with Clash of Clans or whatever app of the moment is, so it makes it difficult to tell the utility.

But what if we had a group of individuals willing to try out different apps and give all of us palliative advocates a better understanding of how it might work for us?

Eric Widera over at GeriPal (read, subscribe, comment if you don't already!) recently posted a list of multiple apps and online tools from a presentation at the American Geriatrics Society 2015 meeting. Look you already have a list of apps to review!  No need to go hunting. Let's review the VitalTalk app or the Health Communications app. So many out there. I also have a list of over 50, I have tried that I would share to help you get started. You could even look at non-health care apps focused on productivity and other functions for the busy clinician!

And really this is a win-win. The developers of these apps want people to benefit from them, and we want to make computers work for us to make our lives better, easier, and more awesome.

Audience: Hospice and palliative care clinicians, patients and families
Difficulty: Easy to Medium
Crowdsourcing: High possibility (tell people what app you will be reviewing and have them try it out the same week, so they can comment on your review)
Cost - Financial: Many of the apps are free, some may cost $1-5,
Cost - Time: Trying out app - 30-90 min over a week; Writing up a review 1-2 hours
Revenue potential: Minimal - might be able to find a few patrons to help fund purchasing apps
Online tools needed:
    - Tablet and smartphone: Helpful to have access to iOS and Android versions
    - Gather crowdsourced reviews: Google Forms, SurveyMonkey or similar
    - ^Website (basic): Can use Pallimed or get your own for under $12/year
    - ^Newsletter service: Mailchimp or similar
    - ^Payment (if needed to purchase apps): PayPal, Apple Pay or similar
^ - optional

Expansion ideas: None identified.

If there is an app you think we should review leave it in the comments on this post.


Photo Credit: "Steal This Idea" by Christian Sinclair is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

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HT: @LVADone on Twitter. I got wind of this article from one of his tweets.

In this month's issue of the Mayo Clinic Proceedings is the first article reporting on a case series with inclusion of palliative medicine (PM) consultations as a routine, integrated part of pre-op or early post-op care for patients receiving ventricular assist device (VAD) as destination therapy (DT). Both Drew and Holly have posted previously on Pallimed about VAD DT.

The Mayo Clinic is a nationally and internationally recognized tertiary and quaternary referral center. As such, beyond the ordinarily sick patients, the Mayo Clinic treats some extremely sick patients, patients who come to be cured, as well as patients who are a mixture of both. The Mayo Clinic recently performed its 100th heart translpant, and they having been implanting VADs as both bridge therapy and as DT. As such, they offer sub-sub-specialty training in Mechanical Circulatory Support and Cardiac Transplantation.


Problematic situations and ethical quandries arise in these environments, given the complexity of the patients, the psycho-social stresses on patients and family members, the array of complications as well the spectrum of outcomes, including "destination nowhere," – a functioning VAD in an otherwise moribund patient. In response, a process of interdisciplinary dialogue at the Mayo Clinic concluded that it would be beneficial to offer PM consultations as a part of standard multidiscipinary care of these patients.

In this consecutive case series, 19 VAD implantations were performed, over a 50-week period. 13 patients (68%) received PM consultations, consisting of an initial intervention of a psychosocial evaluation by a social worker as well as a review of goals of care and advance care plans with PM clinicians, with post-op follow-up. Most PM consultations were proactive and pre-op. The advantage of proactive PM consultations in having already established familiarity and rapport among the patient, family and the PM team was highlighted.

The case series is summarized with patient characteristics, PM consultation status, survival and assessment of end-of-life trajectory. During this period, 5 of these patients died, of which 4 had had PM consultations, 3 had completed a pre-VAD advanced directive. 6 illustrative cases are discussed.

The writers do a nice job of describing their extensive advance care planning process unique to this patient population. They refer to this product as their "preparedness plan," which goes well above and beyond traditional advance directives. The preparedness plan assisted patients and families in thinking about goals and expectations, post-op rehabilitation, psychosocial, spiritual/religious and financial considerations, caregiving concerns, QOL determinants, complications specific to VAD and DT, perioperative morbidity and mortality and ethical issues that may affect clinical DT outcomes. When adverse events occurred, the PM team assisted with preparedness plan implementation, symptom management, and family- and patient-centered support.

Some Thoughts
I noticed that as the series progressed there appeared to be emerging trends of decreasing frequency of PM consultations, more post-op PM consultations, and decreasing frequency of pre-VAD advanced directives (presumably the patients lacking a PM consultation also lacked the more thorough and arguably more useful, personalized preparedness plan). The post-op mortality improved as the series progressed as well. Previous to this endeavor no DT patients at Mayo received proactive PM consultations, and only 14% received any PM consultation whatsoever. This is a small sample and the signal-to-noise ratio is high. Nonetheless the pattern made me wonder if this represents post-conversion, systemic back-sliding/falling-off-the-wagon, although this is expressly not reflected in the discussion.

For discussion sake, I have seen team members and team leadership variously disinclined from parceling out slices of patient care to outsiders. Such teams seem inclined towards jettisoning outside support earlier rather than later in the practice development curve. Sometimes I have seen such jettisoning at the merest blush of the team demonstrating basic competence, at a minimal level of performance, as if going solo were the overriding goal, versus the goal being optimizing outcomes and processes. As has been noted on Pallimed repeatedly, if primary teams can make the necessary time available, and have the multi-disciplinary resources, expertise and communication skills on their team then there's no need for a PM consult. But, I think that such is rare, and complicated care with complicated patients takes organizational specialization and delegation, plus a willingness not to do it all.

Any thoughts or experience from the trenches?

Swetz KM, Freeman MR, Abouezzeddine OF, Carter KA, Boilson BA, Ottenberg AL, Park SJ, & Mueller PS (2011). Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy. Mayo Clinic proceedings. Mayo Clinic, 86 (6), 493-500 PMID: 21628614

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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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Last week's NEJM has the results of a trial of a continuous flow left ventricular device for advanced heart failure. For those of you unfamiliar with LVADs, essentially they are implanted pumps which are inserted directed into the heart and major vessels which pump blood and 'take-over' for the heart; they are partially external (e.g. a battery/power pack is external to the body) - a basic intro, with pictures, is here. Historically they were used to keep patients alive while awaiting heart transplantation. More and more, however, they are being used 'permanently' - to keep patients alive longer, even with no expectation of transplantation. Although costly, and associated with a lot of risks and complications, comparative trials of LVADs with 'medical management' have indicated they can prolong life and improve health related quality of life, in select patients. For a concise summary of the previous data and discussion about LVADs & palliative care, see this Fast Fact; while indeed life-prolonging, a large majority of patients die within 2 years.

This study, a randomized controlled trial, compared outcomes for 200 patients with advanced heart failure (these were sick patients - EF less than 25%, disabling dyspnea/angina at rest or with minimal exertion, nearly 80% receiving inotropes at the time of enrollment, etc.) who were randomized to either a device with a newer design ('continuous flow') or a standard LVAD (which they describe as 'pulsatile-flow' devices). For brevity, I'll use cLVAD and pLVAD in this post. All were ineligible for a transplant at the time of enrollment, although a few ended up receiving transplanted hearts. The authors describe the differences between the devices as such (and there are reasonably understandable diagrams in the paper itself if you're interested):

Newer designs of left ventricular assist devices, involving rotary-pump technology to provide blood flow with reduced pulsatility, have undergone clinical investigation. These continuous-flow left ventricular assist devices have improved the hemodynamics, end-organ function, quality of life, and functional capacity of patients awaiting transplantation. They are also smaller, quieter, and more durable than pulsatile-flow devices, making them potentially better suited for long-term support.

An associated editorial (which gave me the title of this post) describes the differences also:

First-generation devices are pulsatile-displacement pumps that provide blood flow in a fashion analogous to that in the native heart. Such pumps are limited by size and durability, since pulsatility necessitates the mechanical wear of the ventricular assist device. Continuous-flow pumps have small rotating impellers that propel blood forward with surprisingly little hematologic trauma and can do so with greater durability and a smaller size (about the size of a D battery) than pulsatile-flow devices, since there is only a single moving part. Newer pumps use bearing-free designs to minimize device wear.

The primary outcome was survival at 2 years without disabling stroke or need for re-operation, and an intention to treat analysis was used. Patients were followed regularly for the 2 years. The device manufacturer funded the study.

Gross survival was better in the cLVAD group: 1 & 2 year survivals of 68% and 58% vs. 55% and 24% for pLVAD patients. Only 2 patients were alive in the pLVAD group who had the original pumps (most died - the remainder had new pumps or received heart transplants). 46% of the cLVAD patients met the combined primary end point at 2 years vs. 11% for the pLVAD patients: the differences were due to survival, clearly, as well as need for re-operation (36% for pLVAD vs 10% for cLVAD). About 11% in both groups suffered disabling strokes.

Health-related quality of life improved in both groups, about the same (all of this measured by summative HRQOL indices). The burden of therapy was reduced in the cLVAD group, fewer rehospitalizations/surgeries, 88% of time spent outside of a hospital post implantation vs. 74% for the pLVAD, etc. They describe the cause of death in the patients, although not in sufficient detail to really understand what happened - approximately a third of all deaths were from hemorrhagic strokes, however. It looks like about 12% of the deaths in the cLVAD group were from 'external power interruption' which is chilling to contemplate.

While all of this sounds excellent, it's important to realize these were well-selected patients, and while the paper describes inclusion and exclusion criteria, it's unclear (for these 200 patients) what the true denominator was - how many for instance were screened (e.g. end stage heart failure patient hospitalized on inotropes) and excluded prior to enrollment (due to comorbidities or unwillingness to have an LVAD, etc.) - ie this is not a therapy that will be available for many (?most) end stage heart failure patients.

I think of VADs as being paradigmatic of the promises of 21st century, technologically focused medicine. Expensive, constantly changing, and able to keep people alive for a real amount of time - improving 2 year survival from ~10% (which is the survival in the LVAD trials for those who received medical management) to, now, over 50%, improving (at least health-related) quality of life and symptoms, but with much morbidity (strokes, walking around with a battery pack plugged, through your skin, into a pump in your abdomen and chest). Nonetheless the survival advantage is marked and much, much better than most of the latest, fancy 'targeted therapies' for cancer, with an improvement in HRQOL to boot.

My vague enthusiasm aside, there is something which makes me quesy about LVADs, and it's not just the cyborg aspect to them. I wonder if it's also because they challenge, to an extend, some common perceptions about appropriate care for patients with incurable and terminal illnesses. It may be that what's true of - for example - cancer, and dementia, and end stage renal disease (in older, frail patients - see my recent post about this here), is not true with cardiac pump failure. That is, that stepping up invasive, costly medical interventions generally (and of course this is all speaking generally) do very little for our patients: prolong life only marginally (e.g. 'targeted' therapy or long-shot chemotherapy in advanced cancer patients), or at the cost of quality of life by actively worsening it, or by not stopping it from deteriorating (e.g. basically anything we do to prolong life in end stage dementia; dialysis in frail older adults which is life-prolonging but often not 'restorative'). You get the point - this is the stuff we deal with everyday in palliative care.

But, damn, it looks like LVADs might be different - people feel better, and live longer, albeit with still with prognoses shorter than most cancers, and with a sudden/catastrophic death looming over them.

Which has me wondering - how do these patients actually die? Where (ie ICU vs. hospital vs. home)? And how much control do they have other the circumstances? LVAD pumping vs. not vs. explanted? How 'prepared' are patients, and families (for dying, for the choices they will face, for what occurs when the LVAD fails or something else goes wrong)? We don't see many of these patients at my institution, although I know there are scattered palliative care programs nationally who see a lot of LVAD patients - and I'd appreciate any observations about this. In some ways this population seems made for palliative care (symptom management, care planning coincident with seeking aggressive life-prolonging treatments), but I also wonder if as a group the patients are similar to the (speaking in gross generalizations here I know) Phase I trial cancer patients - fiercely seeking any opportunity for life prolongation, and not particularly interested in contemplating Plan B. Certainly, 'palliative care' is no where to be found in the research paper or the editorial.

And now for the patient perspective:

Critical Care Nurse has a discussion of patient and family perspectives on living with LVADs, comparing the experience to EA Poe's The Pit and the Pendulum (ie - feeling out of control of your situation, while waiting for death). (There's free full-text available; the image in this post is from this article).

You can read the article yourself - it's disquieting to say the least, even if the comparison with P&P is a little overbearing. It does give a sense however of what it's like to live with an LVAD: stigma, feeling trapped by the VAD's battery life, loss of control by the intense medicalization of your life, living in fear of death or a complication. Realities, and challenges, not captured by the summative HRQOL scales in the NEJM study.