Tuesday, December 29, 2009

NYT on Palliative Sedation

This Sunday's New York Times had a front page/below the fold article on 'palliative sedation' (which as of last night was still the #1 most emailed article according to their website). It is a long, confusing article, & I'm still trying to figure out what I think of it. Like most newspaper articles about things like this it gets some things it gets spot on, while others I found deeply troubling.

The article tells the stories of several dying patients and their families, as well as interviews with palliative care physicians and other clinicians. The overarching theme of the article seems to be that 'PS' is controversial and ethically suspect - many doctors wouldn't talk about it directly with the journalist, 'slow euthanasia' charges are brought up, etc. The article also seems to recapitulate the generalized confusion out there as to what palliative sedation/terminal sedation is - and while it starts out as seeming to be about the practice of 'continuous/deep sedation' it confusingly then gives at least one patient story which is not about CDS (it's instead about a dying patient who became somnolent in her final days who also was receiving sedating comfort meds but did not receive CDS).

What it does well, and serves as a prime example of, is the anguish and distress that alterations in consciousness in dying patients cause our patients and their families. The loss of communication and personhood that accompanies the loss of consciousness, and the reality that many patients and families frequently attribute it to comfort meds and not the dying process, is repeatedly illustrated in the article. To be clear, absolutely the meds we use to treat symptoms in the dying (opioids, benzodiazepines, etc.) contribute to alterations in consciousness and I don't mean to suggest otherwise: what the article illustrates however is the pervasive unease families have about this, and the failure of clinicians to adequately allay these concerns. Not to make families 'happy' about the devil's bargain of 'more alert/more suffering' vs. 'less alert/less suffering' that occurs frequently in the imminently dying - it sucks and there's no getting around that - but the sense from the article is that many of these family members have persistent and unaddressed emotional and informational troubles about this, and that's a problem.

Aspects which troubled me:

  • There is no mention of the (yes incredibly preliminary and by no means rigorous) investigations into PS practices which do not suggest it frequently hastens death (see for instance here: I by no means think this is any sort of definitive evidence, but it's an indication that people are beginning to try to answer these questions and thus far are not coming up with much to suggest current sedating practices hasten death).
  • The article associates PS with rationing care at the end of life (ie clinicians being urged to hasten things along with PS to save money etc.). It does this by essentially saying 'boy PS could be used this way' then notes that no one thinks it is - but this is a sort of journalistic guilt by association (bringing it up then shooting it down) even if there is no one anywhere who thinks this is a significant problem.
  • Every time it mentions sodium thiopental it notes it is also used as part of a lethal injection cocktail. Nice. So is potassium chloride, one of the most widely prescribed and used meds out there, but who's counting.
  • One of the photos is of a patient who is described as resisting a DNR order for sometime, who at some point prior to her death agrees to it. They have a photo of her signing her DNR order - in the photo her doctor is actually holding the patient's hand with the pen in it (as if to steady it, etc.) - but given the overall tone of the article the (usually slumbering) paranoid part of me wondered if that image was deliberately chosen to suggest the patient was pressured into signing it against her better judgment, etc.
  • There is no presentation of any patients for whom sedation (whether CDS or not) is seen as a good, welcomed thing (by either the patient or family). For every patient discussed in the article their sedation was presented as emotionally fraught, troubling to either the patient, or the family, or even the clinicians. As I mention above, this is absolutely fair, but in my experience it's just as common for family members to greet the mention of deliberate sedation with relief and gratitude: 'thank you for not letting my love one die suffering like they have been,' etc. I scanned some of the comments online and many of them spoke positively about sedation (either 'I'm glad the doctors did it so my loved one didn't die in pain' or 'When I'm dying I hope someone is willing to make me comfortable even if it means this') - it's too bad the article didn't present this perspective.
It's also possible that my reaction to the article is one of weary defensiveness and not wanting to see our community's 'dirty laundry' aired, particularly in a way that I think confuses more than clarifies, and makes it dirtier than I genuinely believe it is. I've rambled at length about this before on the blog - read the end of this post if you're interested.

As I mentioned before, I have very mixed feelings about the article, and would appreciate others' comments and thoughts.

Tuesday, December 29, 2009 by Drew Rosielle MD ·

A few more from the NYT

A few more articles, to round out my inter-holiday week of posting about NYT articles to do with end of life care:

1. Last week was an article challenging the idea that more money spent at the end of life does not improve outcomes (ie the Dartmouth Atlas data on Medicare spending). It specifically looks at some data from Los Angeles area hospitals to do with congestive heart failure patients which indicates that those hospitals which spent the most on heart failure patients had the lowest mortality rates. What I found most notable about this was that it addresses to an extent the very important issue of comparing mortality follow-back studies (ie studies looking only at those patients who have died) with studies of the dying/those at high risk of death. These are different groups of patients, and can generate quite convergent results (see here for a more complete discussion of this).

2. There is a book review of The Other Side of Sadness - a look at the science of bereavement.

His conclusion: the bereaved are far more resilient than anyone — including Freud, and the bereaved themselves — would ever have imagined.

{...] When the worst possible news breaks, you will almost certainly get through it unscathed. Almost everyone does. And if your friends and neighbors mutter that you aren’t grieving normally, don’t worry; you probably are.

In other cultures, Dr. Bonanno points out, it is the ceremonies of death that are the focus of public attention; the community makes sure they are carried out with precision. In our own navel-inspecting society, it is the emotions of death that well-meaning observers focus on instead. Why isn’t that widow shedding at least one little tear? How could the boyfriend be off at the ballgame like that? What is wrong with that bizarrely cheerful orphaned child? Surely they all need therapy.

Not so, Dr. Bonanno maintains. In contrast to the grim slog of Freudian grief work, the natural sadness that actually follows a death is not a thick soup of tears and depression. People can be sad at times, fine at other times. The level of fluctuation is “nothing short of spectacular”; the prevalence of joy is “striking.”

Over all, we are hard-wired to move on, helped by innate mechanisms that may seem maladaptive or abnormal but are actually quite common and effective.

by Drew Rosielle MD ·

Monday, December 21, 2009

The Breadth of Hope, Selling Hope, and More on Quelling Thanatophobia

The holidays are upon us, a new year is approaching, and hope abounds. Three prominent articles touch on the topic of hope in patients with life threatening illnesses.

Pediatric palliative care physician Dr. Chris Feudtner from the Children's Hospital of Philadelphia discusses the breadth of hope in pediatric patients and their families in his recent NEJM perspective article. The essay speaks for itself but here's a succinct passage that I especially appreciated:

"...when clinicians discuss the prospect of delivering bad news to patients or their families, we often speak imperatively about not "taking away" or "killing" or "destroying" their hope. Yet if hope writ large is in fact a collection of smaller hopes, to which of the various possible hopes does the imperative refer? Usually, the focus of paternalistic concern is on the distinct hopes of cure or long-term survival, which are exactly the types of hope that are most threatened by bad news. Indeed, such news often elicits feelings of intense sadness or anger in patients and families. But as countless patients and parents have taught me, although these feelings may signify the receding of a particular hope, other hopes remain or emerge: the process of hoping endures."
NEJM followed it up this week with a perspective piece by oncologist Dr. Benjamen Corn who discusses the relationship between thanatophobia and health care reform (edit: already commented on by Christian a few days ago, too, but I mention again briefly as it relates to hope).

As Christian mentioned, Corn calls for "conversations led by a team consisting of patient advocates (e.g. chaplains) and medical experts espousing countervailing views regarding the use of resources at life's end." I, too, prefer a more oblique view regarding resource utilization near life's end- while I think it's fair to say that most palliative care practitioners appropriately have a view that wasteful spending exists, this view cannot be central to the practice of palliative care for individual patients. The requisite trust for end-of-life dialogue doesn't spring forth from an attitude of rationing. Rather, the fertile ground for trust comes from attention to the whole person, the person's suffering, and identification of the breadth of hope.

But the hope for a long life remains dominant on the landscape of hope for almost all of us, and cancer centers throughout the country (and hospitals in general) capitalize on this hope. NYT continues their series "Forty Years' War" with a piece highlighting some of the disingenuous cancer center advertisements of recent times. While the Food and Drug Administration tightly (relatively speaking) regulates pharma advertisements for individual drugs, the Federal Trade Commission regulates ads for nonprofit medical centers, and the regulations are much more permissive. The common theme of many of the ads is that if you don't come to Med Center X, you'll miss your opportunity to be cured.
"But marketing executives defend their approach, saying cancer treatment ads tend to play more heavily on emotion than on medical statistics because the ads are not intended to inform people who already have the disease. They are meant to make an impression on future patients, who may decide on treatments years after they have seen an ad, or to sway influential people who might advise a future patient. “This isn’t retail advertising,” said Ellis Verdi, president of the DeVito/Verdi Agency in Manhattan. The agency produced the Mount Sinai ad, which ran in The New York Times, and has created cancer ads for other hospital clients. “This is reputation advertising,” Mr. Verdi said. “There is a very big difference.”
Indeed. It's not just the reputation of the cancer centers that is being advertised, but also the reputation of every hospital. If you haven't found the cure at your local hospital (even if it's a cancer center that routinely conducts clinical trials), then it must not be good enough!

Advertising for palliative care services at an individual institution already trying to "sell hope for a cure" becomes tricky in this environment because the message is contradictory. One unspoken message behind the "sell hope for a cure" ads is "we will not only cure your cancer so that you can avoid death, but we'll also make it so it's a non-issue in your life so that you can return to the way things were before. It'll kind of be like getting your car's air conditioner recharged." Why would you need palliative care in that circumstance? A good example is the Mount Sinai radio ad that you can hear in the left sidebar of the article.

Obviously there are many people more savvy than me thinking about how to "change the culture" to make palliative care the norm, but the concept of reputation advertising is relevant to our field and it seems to make sense that this would be a nationwide endeavor rather than institution specific. In other words, instead of trying to convince a patient with metastatic colon cancer and his oncologist in Springfield, Anywhere that he should consider seeing a palliative care service at Springfield General, the advertising message should be aimed at all the healthy people out there everywhere who occasionally think of what it would be like to have a life-limiting illness.* Expectations should be created that counter-balance the message of "we'll cure you and you'll be fine" including:
  1. We'll help you find the breadth of hope (and there's room to include the hope for as long of a life as possible). Improved quality of life is a big part of this but it's not improving QOL for it's own sake but for the sake of hope.
  2. The mere possibility of death strikes fear in the heart but the act of preparing for it can reduce that fear (and, in fact, the preparation can be a source of hope).
  3. Your loved ones are very important to you and therefore, to us as well. (Sounds like an ad for life-insurance, I know...)
In other words, we're the hope-brokers. I'm thinking of an ad where the patient has just returned from a dreadful trip to Mecca Medical Center only to find that nothing could be done there. After returning home, he discovers the local palliative care program and WOW...he wishes the service would have been known to him on the day of diagnosis! There might be an ad out there that already does this well. I want to see it during the Superbowl amidst all the ads hawking products aimed at "palliating" our human impermanence.

The NYT article describes the efforts to put limits on the type of advertising described. For a colorful description of the history of advertising in medicine, I'd recommend this article.

And for more Pallimed discourse on the topic of hope, see here.

*Individual palliative care teams need to take a different advertising approach aimed at referring providers locally, but certainly providers aren't immune to nationwide advertising schemes. I'd be curious to know how Lipitor advertisements during major sporting events influence physician practice (besides the effect of more patients "asking their doctor about Lipitor.") Of course, when consumer demand for Lipitor goes up, Pfizer can just crank up the manufacturing lines...it's a separate dilemma for the field of palliative care, but might be a good one.

Monday, December 21, 2009 by Lyle Fettig, MD ·

Thursday, December 17, 2009

ALS Practice Parameter Updates

Neurology recently published an update to a 1999 evidence-based review of issues in the management of patients with amyotrophic lateral sclerosis (ALS). The update is divided into two parts with the first focusing on drug, nutritional, and respiratory therapies while the second part focuses on multidisciplinary care, symptom management, and cognitive/behavioral impairment.

Many of the areas reviewed that are relevant to palliative care have insufficient data to fully inform clinical practice (nothing new under the sun for our field) but I'll summarize some of the conclusions.

The pathophysiology of ALS remains refractory to attempts to modify it significantly. Rilozule is the only medication that may slow disease progression, although in the four "Class I" studies (controlled clinical trials), survival is only prolonged 2-3 months on average.

Potentially life-prolonging therapies, therefore, include PEG tubes and non-invasive/invasive ventilation (which, according to the authors, may both be "underutilized.") PEG appears to stablize or improve weight and likely prolongs life, but evidence that it improves quality of life is entirely lacking. Some lower quality studies suggest that if you're going to do it, consider it before the patient's functional vital capacity falls below 50% predicted, because there may be more complications after that point. The effect on QOL is mentioned as an area for future research.

Several lower quality trials suggest that non-invasive ventilation (NIV) can have a positive impact on energy, dyspnea, daytime somnolence, depression, concentration, and fatigue. Patients who had a tracheostomy rated their quality of life to be similar to those who used NIV and the vast majority indicate that they'd choose ventilation again. Interestingly, some evidence suggests that caregivers rate their QOL to be lower than the patients.

Communication is given fleeting attention in the guidelines, with a focus on breaking the news of the diagnosis. In the few studies referenced, patients reported lack of empathy, insufficient explanation of the diagnosis and the course of the illness, and lack of information on where to get help. But "there have been no controlled trials of breaking the news in ALS" and "there is insufficient evidence to support or refute any specific method of disclosing the diagnosis in ALS." A fair conclusion in some ways, but this suggests the method for disclosing ALS may be different than the method employed in a plethora of other settings in which life-changing news is delivered to patients. It isn't, and I wouldn't bat an eye before applying evidence on methods of discussing "bad news" or prognosis in cancer or ICU patients to an ALS population. What is needed, perhaps, is further evidence of what the specific "information needs" of this population are. (For example, the method for determining that an individual is ready to talk about ventilation or PEG is already informed by research in other populations, but when are most patients ready to talk about these topics? What are the top 10 concerns of patients 1 month after diagnosis is disclosed? etc.)

The evidence (or lack of evidence) behind the management for several symptoms is detailed, including sialorrhea, pseudobulbar affect, fatigue, cramps, spasticity, depression, anxiety, insomnia, cognitive impairment, pain, and dyspnea. Also, "no evidence" guides the use of hospice or the "optimal method" for withdrawing ventilation.

The issue of prognostication (and lack of evidence to guide physicians) is not mentioned.

Perhaps by the time the next practice parameter comes along, the role of interdisciplinary palliative care teams in the care of ALS will be better delineated...at least well enough to receive a more appropriate mention than in the present guidelines. For example, in Figure 2 of the first article (an algorithm detailing respiratory management), the first vague reference to palliative care is at the very end of the algorithm after the patient has "failed" non-invasive ventilation at least twice. Then, you're suppose to either intubate and/or trach 'em OR "refer to hospice for palliative care." That's too late. Palliative care could be introduced well before then, but which patients benefit the most and when? To the authors credit, there is a brief mention of palliative care being provided concurrently with other therapies.

Anything in these guidelines surprise you? As a palliative care practitioner, are you getting timely, appropriate referrals of ALS patients? What about as a hospice provider? What challenges have you faced with this population?

Thursday, December 17, 2009 by Lyle Fettig, MD ·

Pal-pourri: Hospice Santas, Death as Failure, New Blogs, Seeking Spanish Speakers

Hospice Santas:
The USA Today had a feature article on Santa's across the nation playing a role in hospice care.  There are over 175 hospice trained Santa Claus'.  Go figure!  Thanks!


Death as Failure:
One of our blogging pals Hospice Physician was flabbergasted to hear a cardiologist say:  

“...when I see you, I think that someone (a physician) has failed.”
Have you heard this recently?  Go see Hospice Physician and let him know he is not alone.

Radiation Therapy Quick Review:
Here is a good review from KevinMD about the different types of radiation therapies.

New Palliative Medicine Related Blogs:
  • Outcome Resources is a pharmacy benefits manager that has made good use of Twitter and Facebook to get helpful information out about hospice news.  They recently started a blog which has some really good deep information for the palliative care clinician.  While I usually do not like to highlight blogs that have just started (Because they are more than likely to fizzle out) Outcome Resources has high quality content and has maintained a solid presence on other social media platforms.
  • Starting back in 2008, Compassion and Choices has been blogging about end of life issues beyond just physician assisted death, one of the more controversial points they are known for.  
Spanish Speaking Palliative Staff Needed!:
Dr. Elizabeth Menkin of San Diego Hospice who created the "Go Wish" game to review advance care planning using different values placed on cards is looking for any Spanish speaking Palliative Care people who could help her make a Spanish version of the game.  You can tweet her @ESMenkin or contact the C

by Christian Sinclair ·

Give the Gift of Pallimed

As 2009 comes to a close and you are giving gifts to those you hold dear and trying to think of what to get the members of your hospice or palliative care team, consider giving the gift of Pallimed this holiday season. 

We are about to enter our 5th year as a blog and have succeeded based on your spreading the word about our blog to those you work with.  Pallimed continues to be a labor of love by the five of us (Drew, Lyle, Amy, Amber and me) and is not currently nor in the future will it be supported by ads or subscription fees.  Our support comes from your feedback, interactions, and sharing. 

So give the gift of knowledge this year and tell your team(s) about Pallimed.

On behalf of all the Pallimed bloggers, thank you very much for your support.

by Christian Sinclair ·

Thanatophobia - Ending End of Life Fears in Health Care Reform

The New England Journal of Medicine published an opinion piece by an oncologist who compares his experiences of difficult conversations with patients and families about death to the difficulties and avoidance at a national level regarding the role of advance care planning in health care reform.  Same barriers on a personal as well as national level.

(Thankfully the article is made available as a free pdf so you can easily check out the full article yourself.)

One of my favorite sentences from the piece:

My concern is for the vulnerable patients, but my goal is to reach a level of maturity that enables these conversations to transpire in a manner that is indeed thoughtful.
At the end of the piece he calls for "conversations led by a team consisting of patient advocates (e.g. chaplains) and medical experts espousing countervailing views regarding the use of resources at life's end..."  Yet in the whole article the word palliative is not mentioned once.  Even in the last paragraphs, questions for the future are brought up, but oddly lacking is a question regarding the appropriate role for palliative care teams to help serve this balancing role as they are doing so well in many hospitals across the country. 

Corn rightfully acknowledges the expenses associated with caring for patients in the last few months of life should be a major discussion point in health care reform, but also neglects the common fallacy in those cost-benefit studies which is the lack of effective and easily integrated prognostication tools.

Overall it is a good piece and one you may want to consider bringing to your team for further discussion.  Would this piece be written differently if it was a palliative care clinician?

by Christian Sinclair ·

Sunday, December 13, 2009

Poll Results: Palliative Care Experience with Intrathecal Pain Pumps

Thanks to 100+ people who participated in the Pallimed survey on Palliative Care Experience with Intrathecal pumps.  Before we get to the results, I am open to collaborating with anyone who would like to take this further and pursue scientific polling with an aim at publishing in a medical journal.  This survey was an initial toe in the water to see if some of the same issues I was seeing in clinical practice echoed in other medical communities.

So on to the results.  Here are the aggregated responses by question.

Most of the respondents (nearly 70%) were doctors probably reflecting the staff member most likely to have interaction with intrathecal pumps and their programming.  It also possibly reflects our reader demographic although in our annual reader survey doctors only make up less than 40% of the respondents.


Clinical experience with IT pumps is low with 75% seeing zero to 4 patients in the last 12 months.  My own experience is above 20 among my time in inpatient hospice, palliative home care and palliative care consults in a hospital over the past 12 months.  There was only one 'other reply' that tells just enough to wonder if there is another question that should be asked: 'with one referral that we declined.'  A follow up question indicated only 29% of respondents had actually changed settings on an IT pump before with 32% feeling very or somewhat confident. (Who are the respondents who feel confident even without having changed a pump before?)



In asking the level of pain relief observed in patients from their IT pump the responses indicated good success with 80% reporting moderate to excellent pain relief. But in the comments another story was emerging with statements such as:
  • accentuates a placebo effect
  • Depends significantly on the practitioner placing the pump, pt expectations, and type(s) of pain
  • Each and every one had inadequate management
  • every patient is different some get great relief, others not so great.
  • Have had widely variable experiences from tremendous relief to being perceived as worsening pain!
  • IT pumps give excellent relief IN APPROPRIATELY SELECTED PATIENTS, who are rare
  • Sometimes work great; many times don't. probably 20% good; 80% not so good
  • The patients I have cared for already had IT pumps and were not in good pain control when I met them.
  • unreliable d/t apparent blockages in line at times?
Now even in these comments a lot of issues come up.  What are the patient selection criteria?  Are we as recipients of patients after implantation seeing a selection bias? (i.e. There pain is still not well controlled with an IT pump so let's see if palliative care has any ideas?)  What is adequate management of an IT pump?

95% of people indicated patients on IT pumps were still on systemic opioids despite having an IT pump.  I have heard some patients and families report 'the IT pump was put in so we wouldn't have to be on morphine/oxycodone/methadone/etc.'  Maybe any future IT pump studies need to have an outcome for mean daily opioid dose reduction or a binary outcome for off oral opioids at 1 month, 3 months, etc.



I asked the question about co-existing existential/emotional/relationship pain because patients with IT pumps seem to already have complex pain by the time I have been getting involved with them (the specialist effect/bias?).  So it was interesting to find palliative care staff felt 40% of this patient populations seems to have more non-physical pain modifiers contributing to the complexity of effective management.  A possibility exists for exploration of these pain affecting parameters before placement of IT pumps since they are unlikely to be affected by intrathecal pumps.



Access to supportive resources has been an area I have found challenging when working with IT pumps.  The key is to be proactive and develop these essential relationships before they are actually needed in a crisis.  I am lucky to have two physicians and their teams that have been exceedingly responsive and cooperative in managing these patients.  But I have also have had doctors who have never bothered to return multiple calls and made it difficult to do effective ongoing management after the IT pump is placed.  These are not 'set it and forget' medical tools.  Some excerpts of the 15 comments help give some flavor to the above chart:
  • Depends... when I have been covering hospice sometimes we have no access
  • Hopefully access to physician either having implanted, or currently managing, the pump. Ideally the pump has come either with pre-written orders for dosage adjustment if needed.
  • Just haven't gone there yet, and when referral was sent for inpatient unit; we did not feel we were able to provide the right care without a good system in place for handling this.
  • Moderate access to doctors - some are very accessible; others not so much
  • None of the docs who place the pumps have any way to help if the patient will not come into the office.
  • Nurse in the hospital who manages.
  • Pain physicians state they are available at all times however can be very difficult to reach urgently. They may be covered by anesthesiologist who take a hands off approach. Once reached the pain specialist seen to act appropriatly (sic) and be helpful. At times the expectation is the patient will need to seen which may not be possible from the patient standpoint.
  • while I have easy access, the patient may not, due to insurance issues.
  • work with chronic pain team who has the interrogator. they make the ordered changes
The one question that had the most comments I am still wading through.  The questions was "Tell me your opinions about IT pumps for pain control in hospice and palliative care patients."  The responses are published on a different web page to save space here, but read through a few of the 68 responses and you get a big feeling of lukewarm to cold feelings towards IT pumps an effective pain modality.  This brings up a few major issues:
  • We need better communication channels with our colleagues in interventional pain before during and after IT pump implantation.
  • We need to study patients with IT pumps in palliative care arenas to see what specific characteristics lead to good or poor pain management.  Patient selection criteria, management differences, access to qualified professionals, pain modifiers, use of concurrent opioids, psycho-social concerns, and on and on.
  • We need to look at outcomes for this patient population in palliative care.
  • We need better training on how to best medically manage and practically manage the systems surrounding IT pumps.
  • And we need to publish and communicate about this issue beyond this blog post.
Oh and given the 98% of people who responded to more polling (occasionally) we will be planning more of these in the future so feel free to email me at ctsinclair@gmail.com or post in the comments any ideas for future polls.

    Sunday, December 13, 2009 by Christian Sinclair ·

    "There is No Billing Code for Compassion"

    "There is No Billing Code for Compassion."

    The quote comes Dr. Amy Ship, the winner of the 2009 Compassionate Caregiver Award from the Kenneth B. Schwartz Center.  In her acceptance speech she highlighted the personal connections with patients which make medicine so special, especially primary care medicine, when practiced with the time and attention it deserves not the harried Frankenstein version we have today.



    All of her points echo the attraction many people have to palliative care and hospice as a profession.  She has a couple of applause lines here that are great.  She also shares her experience on both sides of the stethoscope.  The video is only 8 minutes.  Take a quick break and become inspired.

    (via Paul Levy of Running a Hospital)

    by Christian Sinclair ·

    Thursday, December 10, 2009

    Rise of the Machines

    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.

    Thursday, December 10, 2009 by Drew Rosielle MD ·

    Tuesday, December 8, 2009

    Attitudes of Adolescent Cancer Survivors Toward End-of-Life Decisions for Minors

    Tulip flowers at the Keukenhof garden - Lisse,...Image via Wikipedia
    I remember a discussion with a teenager with cancer and his family regarding treatment options and prognosis.  He was open to discussing these matters and even initiated a lot of the discussion and questions himself.  At one point I told him that I wouldn't give him a "B.S. answer".  He replied, "You can really say 'bullshit.'  You don't have to abbreviate that word.  We know what it means.  Just say it."

    Given the increase in adult medicine staff seeing pediatric patients in palliative care, it is nice to open my wife's Pediatrics journal and see many different articles pertaining to palliative care.  I remember a year or two ago, there did not seem to be that many.  Regardless of the increasing number of relevant articles in the journal, they still do not have a palliative care heading in the 'Topic Collections' section (Ahem, AAP!).

    There are a few articles in this month's journal, but I would like to highlight one that focuses on just the situation I faced above.  An end of life research group from The Netherlands and Belgium interviewed 83 adolescents (11-18yo) using a previously used survey on almost 2000 teens without chronic illness (school survey).  A few new abbreviations were introduced which I will use here for consistency with the original research article:

    ELD = end of life decision
    NTD = non-treatment decision (withholding/withdrawing medical treatments)
    APS = alleviation of pain and symptoms

    NTD and APS are types of ELDs.  Got it?  Ok, let's move on.

    In addition to NTD and APS they also asked opinions about intentionally hastened death via either euthanasia (administered by medical staff) or physician-assisted suicide (administered by self).  As many of you are familiar with euthanasia and physician assisted suicide is permitted by law in Belgium and The Netherlands, but if you are under 18 you can not choose either of those options.  Although if you are under 18 and judged to be competent (by whom? it varies) you can make NTD and APS decisions.

    The adolescent teenage survivors had over 80% acceptance/positive in regards to acceptability of NTS and APS decisions in a hypothetical terminal cancer patient scenario.  This was statistically significant compared to the school sample who had agreement rates in the 60% range.  The interesting thing is the school sample had nearly similar agreement rates for NTD, APS and euthanasia possibly indicating the confusion about these very different approaches which exists in adults and in the US.

    I think a very profound and helpful finding is that 96% of the cancer survivors agreed that a child with terminal cancer has the right to know that s/he will die soon.  Obviously for parents and medical staff this could be a very difficult thing to consider sharing with a dying child, but the possibility for wanting to be informed is quite high it therefore behooves us to at least inquire to the patient's wishes.  They may not want to know right then, but at some point prognostic discussion helps inform what treatment decisions they may wish to pursue.

    ResearchBlogging.orgPousset, G., Bilsen, J., De Wilde, J., Benoit, Y., Verlooy, J., Bomans, A., Deliens, L., & Mortier, F. (2009). Attitudes of Adolescent Cancer Survivors Toward End-of-Life Decisions for Minors PEDIATRICS, 124 (6) DOI: 10.1542/peds.2009-0621


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    Tuesday, December 8, 2009 by Christian Sinclair ·

    2010 AAHPM/HPNA Annual Assembly Preview - Overview

    In 2007, 2008, and 2009 I posted previews for the AAHPM/HPNA Annual Assembly. I started doing the preview because one of my favorite things about conferences is talking to other people to see what they are interested in, so feel free to comment on which sessions you are excited about. In the upcoming weeks I will be posting about some of the sessions I think are interesting.  If you are giving any of these talks, I encourage you to leave some comments to get more people aware of your talk.

    This year the Annual Assembly is in Boston, MA from Wednesday March 3rd until Saturday, March 6th. (2011: Vancouver; 2012: Denver; 2013: Taking requests?)

    I wanted to point out some of the new features at the Assembly this year in this post as well as some of my favorite general features.

    First of all the AAHPM and HPNA made a major change which should lead to more uniform goodness at the Assembly.  The chairs of the steering committee now sit for alternating 2-year terms allowing best practices to be shared and cementing institutional memory while allowing for fresh ideas. Brilliant!

    The coolest new feature is the book club discussion sponsored by the Humanities Special Interest Group.  The book is Drew Gilpin Faust’s This Republic of Suffering: Death and the American Civil War.  The book is fantastic and I did not even t.hink I would enjoy it given my general apathy towards Civil War era history. (Hey, I grew up in California.) Philosophically, spiritually, intellectually a must-read for any palliative care practioner who enjoys thinking.

    The cool thing about the book club project is not the informal gathering on Saturday to discuss the book in small groups (please pre-register).  That is pretty cool obviously.  But the awesome thing is everyone who has read the book before the conference can talk about it from the same shared body on knowledge.  Don't know someone in the elevator but they have a badge for the assembly on?  Start talking about the book.  I am hoping the Academy gets little stickers or something that says 'I read the book.' To make it even easier to identify those who want to start talking about it.  


    Other neat ongoing features:

    Rounding with the Stars: Returns to add more case based discussions in addition to the hidden gems in the  Professionals-in-Training Case Conferences.  I did not make it to any of these sessions last year, but if they are back, I presume feedback was great.

    Special Interest Group (SIG) Sponsored Symposia: Back again, this allows SIGs some influence to the curriculum of the Assembly by supporting a talk focused on an area of interest to a particular SIGs members.  A good way to elevate the value of a SIG, thereby creating interest in joining a SIG.  This year there are sponsored sessions from: Humanities, Fellowship Directors, Professionals in Training, Cancer, Ethics, Pediatrics, Long Term Care, Osteopathic.  Interesting the organizers put them all at the same time.

    Going Green: The AAHPM is continuing their efforts to reduce wastefulness through a reduce, reuse, recycle mantra at the Assembly.  Huzzah!

    Paper Sessions Without Distractions!: This smart scheduling approach returns to give paper sessions their due, by not having to go head to head with other concurrent sessions.
     

    So what in general do you like best about the Assembly?
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    by Christian Sinclair ·

    Intrathecal Pain Pump Survey - Almost Closed

    Photo #3000! Antique Shell Gas PumpImage by cobalt123 via Flickr (A pump! Get it?)

    Holy cow!  You have really given me some great information to work with.  I am still combing through the info and promise to post my informal analysis by Thursday evening.  I will be closing the survey late Wednesday evening so if you thought about doing it but have not yet, better hurry up.

    You can use this link to email your colleagues if they would be interested in taking it but are not readers of Pallimed (For shame!): http://www.surveymonkey.com/s/CCY2BTL

    Regarding the non-scientific-ness of the poll: if any of you would like to collaborate on a more scientific poll to be published acadmically let me know.  And I think you will when you see the results post later this week.  The poll was a spur of the moment/carpe diem creation from stuff that was pent up for a while.  And yes some of the questions were meant to be a little fun but still informative.  That is why I made lots of room for comment boxes.

    By the way some of you are great comedy writers.  Here is my favorite line so far:
    "I'm a palliative care physician trapped in a medical oncologist's body..."
    So keep the surveys coming.  I promise we won't be doing these all the time but the range and intensity of responses is pretty good! Maybe something we do quarterly or PRN on big timely issues. If you have ideas for other surveys to do in the future please feel free to comment or email me. 

    Oh yeah, don't forget to take the survey if you have not.
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    by Christian Sinclair ·

    Sunday, December 6, 2009

    Poll: Intrathecal Pain Pumps for Hospice / Palliative Care Patients

    In my hospice and palliative medicine practice I have been seeing many more intrathecal pumps being used in the past year then I can recall.  More and more palliative care doctors are telling me they are being asked to help in the management of these pumps and they express different levels of comfort and competency.  So as I thought more about this, I wanted to write a post about all the issues I have concerns about regarding the use of intrathecal pain pumps for hospice and palliative care patient populations mostly for the indication of cancer related pain.

    But I decided instead of telling you how I felt and laying all the issues out I would take your pulse and use that to better inform my writing, so please take this short (less than 5 minutes...I swear) poll.  Your reward for taking the poll is multiple: 1) you see what others are thinking about this 2) you contribute to the informal knowledge base of attitudes and experience regarding IT pumps 3) you get a better researched post from me.

    The poll is aimed at nurses and doctors.  Please feel free to pass it on.  More voices = more opinions.

    Sunday, December 6, 2009 by Christian Sinclair ·

    Featured Blog - "Life As a Hospice Patient"

    We have featured blogs here from social workers, doctors and nurses in the hospice and palliative medicine field, but we have never featured a blog written from a hospice patient.  Judi Chamberlin has been writing "Life as a Hospice Patient" and just had her one-year blogging anniversary December 4th.  She has led a very active life including being an activist in the psychiatric survivor movement since 1971 and author of "On Our Own," (available from the National Empowerment Center (http://power2u.org/). One of her goals is to ensure that people labeled as "mentally ill" have the same rights as others and to prevent their marginalization and discrimination.  Her activist background has been continued with her blog about her hospice experience.

    Her hospice story was even featured in the Boston Globe because her insurance had reached it's lifetime $5,000 hospice benefit limit.*



    Some highlights from Judi's posts:

    From the post "An even stranger day":


    Meanwhile, I was attempting to manage my symptoms of feeling generally awful, and I used enough morphine, ativan, and ABHR gel to finally start feeling better, with no more pain, and just a slight amount of spaciness, which seemed like a reasonable trade off. Combined with the general pattern of feeling better as it gets later, I'm feeling better right now than I have all weekend. Yesterday I needed resting chairs to get from bed to the living room, but today I made it without the chairs, and I've gone back and forth to the bathroom as well without getting totally exhausted (a big change from yesterday).

    From the post "...and more sleep...":
    Marty, Marie, and I had a good conversation on Tuesday, in which I expressed my fear of hitting a plateau in this extremely weak state and just lingering here. This is the worst thing I can imagine, growing more and more miserable and frustrated as I can do less and less. And today we met with Nancy, and I talked about the same fears. I am just so weak and feeling so blue. Even doing simple things, like writing out some checks, feels like too much. I just want to lie here and watch TV or read the paper or do crossword puzzles.

    I keep drifting off into a state of semi-sleep where I can hear the TV or the conversation in the room and think I am participating but of course am not making any sense. I'm tired and bored and frustrated and just don't want to go on like this much longer. 

    From the post "Hospice--patient centered care":
    The hospice movement attracts certain kinds of people, who find it rewarding to work with dying patients, although I suppose many people would not find it appealing work. But in all my experiences with hospice, both when my dad was a hospice patient, and now my own, I have found a group of people who are upbeat without any kind of false cheerfulness, but who instead can help to find a positive aspect in any situation.

    When I first came into hospice, I was shown a diagram of patient-centered care, with the patient represented by a big circle in the middle, surrounded by smaller circles standing for family, nurses, social workers, etc., all of whom are there to help the patient achieve his or her goals. So when I said I wanted to go to Omaha, many people at both agencies had to do a lot of things to make it possible, without any sense that they were going out of their way or doing something "extra" or unnecessary--if it was something I wanted to do, hospice was there to make sure it happened.
    She writes very openly allowing us to see her raw feelings and honest reactions to the people around her.  Go read through Judi's blog and leave a comment and let her know someone is listening.

    *That's a story for another day.

    by Christian Sinclair ·

    Tuesday, December 1, 2009

    Morphine and Cancer Growth - Explained

    Structural formula of morphineImage via Wikipedia
    Eric Widera at at GeriPal wrote up a great rebuttal to the mini-news hype about some bench research about opioids influencing cancer growth.

    The headlines all blared hyperbolic and false oversimplifications of the impact of the research.  Now I am no opioid apologist, but I do have to recognize that I spend a great deal of my education to patients, families, staff, and other doctors de-stigmatizing opioids so they may be used effectively for good pain control while balancing their manageable risks. So while I nearly always am defending appropriate opioid prescribing, I also want to recognize if there is potential harm in its use.

    Eric's post is mandatory reading for any hospice or palliative care staff so we can be well informed to refute any claims that morphine will kill people by accelerating cancer growth.  If a family member or patient asks about this and a staff response is just "No it doesn't," we lose a chance for trust building.  If we are able to intelligently respond while respecting the fact the family 'read/saw it in the news' we are much more likely to be respected in return for our knowledge about the most recent information about our field.

    In the future with actual in vivo research we may find this to be the case, but this link has not been proven yet and should not affect current standards of care.  Many things have been hypothesized in vitro without ever manifesting the same effect in vivo. 

    Please go read the post and email it to your teams.  If anyone has an experience of talking to families/patients about this please feel free to share lessons learned in the comments(while avoiding HIPAA/privacy issues)

    (A side note: Issues like this is why I love blogging.  The easy open access sharing of information in a rapid manner that could not be done in a journal, or would be non-archivable like an email, the chance for more open discussion about a potential controversial subject.  Information is power and that power is amplified by sharing and discussing.)
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    Tuesday, December 1, 2009 by Christian Sinclair ·

    Palliative Care Grand Rounds is Up - Death Club for Cuties

    The December edition of Palliative Care Grand Rounds, a monthly review of the palliative care blogosphere, is up at Death Club for Cuties.

    Jerry is a nurse in a neuro ICU who blogs for "...nurses who care for patients and families at the end of life.  Laypeople and other health professionals may also find it useful."  Here he describes how he came up with the name for his blog:

     "It came to me in a flash of inspiration late one night while standing in front of the fridge. It was loosely inspired by the emo band, Death Cab for Cutie, though I'm not a fan. I've seen exactly one video of one song, and that was quite enough."
    It is a shame that Jerry is not a fan of Death Cab for Cutie, because 1) they are a really good band and 2) they sing about palliative care as I blogged about at the arts blog with an interpretation of a song about dying in the ICU. (nudge nudge, Jerry)

    Despite his poor taste in music, I really like Jerry's approach on a blogging.  Very personal but also academic and enlightening and not just full of self-reflection.  The personal reflection helps to inform the larger discussion which is what a great blog should do. And I am not just saying this because of his very kind shout out to Pallimed.


    Go read Grand Rounds, and Jerry's blog, leave him a little love in the comments.

    by Christian Sinclair ·

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