Mastodon 10_04 ~ Pallimed

Tuesday, April 27, 2010

Blogging Til I Die: A cultural revolution?

Back in January we posted a story about the death of Judy Chamberlin, the blogger/activist who wrote about a blog all about her 13 months on hospice. This week two more people died who lived their illness and lives very publicly through blogging and social media. With the profound temporal proximtiy of the deaths of bloggers Eva Markvoor (Blog: 65 Red Roses) and Alicia Parlette (Blog: Alicia's Story). CNN published a great article talking about Eva and also mentioned a two other bloggers who died: Miles Levin and Michelle Lynn Mayer.

With Eva and Alicia, both women were very young, 25 and 28, respectively. And for anyone who knows the history of American bioethics will realize young women, severe illness and dying seem to bring about a intense focus of cultural awareness (see Schiavo, Cruzan, Quinlan). It struck me how the open sharing of the decline of their health towards death may signal a cultural revolution about how our society looks at death and dying. Where death and dying has been somewhat hidden from public view in the ICU and nursing home, Judy, Eva and Alicia brought us closer to them during their last days. By blogging they were able to grow a large audience who became mroe involved in their story, their life. Much like Randy Pausch and his famous YouTube 'Last Lecture' and follow-up book, they have become very influential. Some of the comment counts on their blogs number in the hundreds. Multiply that by a fudge factor of 50-100 for all the lurkers who don't comment and you start to realize how many people have read a part of the story.

I believe this younger generation who has a more open access approach towards their social life may be a strong force in changing the narratives of medicine, disease, health and dying. They may not reach everyone with their story, but because they are heavily networked you only need to a 100-200 widely read blogs to start seeing a big impact. While the effect starts local, it soon spreads regionally and eventually globally because of the international reach of the internet. And when taken together they may have a wider reach than books like the upcoming Passages in Caregiving or Two Weeks of Life: A Memoir of Love, Death and Politics.

Some interesting features of social media for patients:
  • EASY TO DO: Relatively low impact so when you feel sick you can still send out a tweet or record a video.
  • ACCESSIBLE: Can be done from mobile platforms or with increasingly accessible internet in hospitals (unless your hospital is so short-sighted as to block sites like Facebook from public wi-fi cutting off patients from their social networks.  Palliative care people should advocate for any social media site blocking to end as holistic patients care)
  • FEEDBACK: when you are sick online communities usually rally with words of support and love, just what someone who is sick may be looking for.
  • WIDE REACH: when the network starts to work for you the spread of your story can be viral
Reading these stories raise many questions for me as a doctor and social media advocate:
  • Do you know if your patients or families are blogging?
  • If so, did they tell you or did you find it?
  • What are they writing about hospice and palliative care issues?
  • What if a patient wanted to interview for their blog?
  • Should we encourage or share stories of our patients using social media so that others may see the risks and benefits?
  • How should we as professionals learn from these open looks into a patient's life?
  • Will I blog when I am dying? (I think I will, but who knows how I will feel?)
Photo Credits: from the blogs of Eva and Alicia at the links above
Story Sources: 
Alicia Parlette story via Twitter 

Tuesday, April 27, 2010 by Christian Sinclair ·

Historical Pallimed: April 2006

Here we continue our historical look at Pallimed posts from the same month in 2006 (our first full year of posting).
Here are previous posts in the series:
So here are some highlights from Pallimed circa April 2006:

by Christian Sinclair ·

Pallimed Arts April 2010 Round Up

Here are the posts from the Arts and Humanities blog from the month of April in case you missed some:

  • Amber Wollesen reviews the recent HBO premiere of You Don't Know Jack featuring the pro-hastened death enthusiast Jack Kevorkian.
  • An interview with blogger and poet Susan W. Reynolds about grief and growth through art by Amy Clarkson
  • No hospice or palliative care advocate should miss this song: "I Don't Want to Die (In the Hospital)" by Conor Oberst.  So much to think about and analyze that Amber gives you a head start.
  • Amy continues to amaze me with her analysis of classical pieces and understanding the history of the composer with her post about Edvard Grieg's Ballade in G-minor.

by Christian Sinclair ·

Tuesday, April 20, 2010

Surgical 'Buy-In' and the Surgical Contract

[Edit 9/9/10: Welcome New York Times Readers! Please feel free to leave a comment and let us know you are here. And if you are looking for more surgical related posts, click here.  For first-time readers of Pallimed check out our FAQ.  And lastly you may be interested in our Arts & Humanities sister blog. - Sinclair]

An 85 year old woman with hypertension and ischemic cardiomyopathy presents to the emergency room late one night with severe abdominal pain.  She is found to have a large, and leaking, abdominal aortic aneurysm.  The on-call vascular surgeon comes in from home in the middle of the night and has a half-hour long conversation with the patient and her children about attempting an operative repair.  The surgeon knows the chances of the patient surviving the immediate surgery aren't great, perhaps 60%, and the post-operative period will likely be rocky - days in the ICU, maybe longer, with a good chance of needing mechanical ventilation for that long or longer, not to mention acute kidney injury, need for dialysis, and stroke.  The alternative is an almost certain death for the patient within a day or two, although the patient can be made very comfortable.  The patient is told all of this, agrees to the procedure, and 3 days later is still ventilated, anuric, and needs CVVH (continuous hemodialysis). Her family at this point asks, insists, that dialysis not be started and the patient be removed from the ventilator and allowed to die comfortably.  'She wouldn't want any of this.'  You, the palliative consultant, get the consult call from the SICU (surgery intensive care unit) case manager, because the surgeon is so upset and angry this is happening she couldn't bring herself to call you herself.* 

Sound familiar? 

Critical Care Medicine has a fascinating qualitative study about surgeons and end of life care which speaks directly to this, and similar, situation.  It's an excellent paper for the teaching file, particularly for fellows who don't have surgical backgrounds (which I assume is most, but thankfully not all, HPM (hospice and palliative medicine fellows these days). 

The paper presents a small qualitative study of 10 physicians (mostly surgeons; a few non-surgeons who do extensive work in SICUs) at two institutions who participate in high-risk procedures, and involves extensive open-ended interviews about end of life care post-operatively, and attitudes towards advance directives, based on specialty specific cases presented to the surgeons (cases which present similar scenarios as far as I can tell to the one I described above). A grounded theory approach was used to establish and describe the themes that emerge.  Most of the paper simply describes those themes.

The major theme they identify is described as such:

Respondents described a complicated relationship involving negotiation with patients who require high-risk surgical procedures. According to physicians, this interaction creates an informal contract between the surgeon and patient in which the patient not only consents to the operative procedure, but commits to the postoperative surgical care anticipated by the surgeon. We have named this implicitly understood contract “surgical buy-in.”
What they describe is that the surgeons either feel an implicit contract exists between the patient and the surgeon that if the surgeon is going to attempt this risky procedure, and that the patient consents to this, that they are consenting to (what generally seems to be an ill-defined) post-operative period in which essentially the surgeon decides what is necessary and appropriate care/treatments.  While not actually stated in the paper, my sense is that there is an affinity between the reality that intraoperatively the surgeon has tremendous latitude in deciding how to proceed to make the surgery successful (you don't consent the patient mid-operation about whether or not to ligate the hypogastric artery), and the latitude they feel is necessary to ensure the success of the post-operative period.  It's a 'package deal' (this language is used by a subject).

The surgeons described that part of the informed consent process for the surgery involves this, although it seems that at times this is frequently implicit (my sense here is that the expectation is that if the surgeon describes what could happen post-operatively and the patient still agrees to the procedure, then there is an implicit consent/agreement to all the post-operative care that the surgeon feels is necessary to keep the patient alive).  The length of time needed post-operatively also does not seem to be explicitly defined by the surgeons in this process (which seems very understandable to an extent - the distinction between 7 days and 8, or 14 and 21, are arbitrary and in reality are patient-specific, and dependent on what actual complications occur, etc. etc.). 

They also describe the surgeons' description of grief, guilt, frustration, and culpability when these events happen.  There is a distinct sense of betrayal as well - that the surgeon told the patient this could happen, the patient agreed to take the risks, and when things don't go well immediately, the patient (or family) wants to stop, even when the surgeon thinks there is a chance s/he could pull the patient through. A key quote:
Respondents described situations in which requests for limiting postoperative care were denied. Surgeons' rationale for this course was based on the patient's potential for recovery: “For example, you know some people get pneumonia, but 90% are able to get through it and get off the ventilator and . . . that is sort of a bump in the road to that, and from my point of view you have to be willing to endure that on some level if we think you are recoverable.” Surgeons noted that this approach was paternalistic and even might be contrary to wishes expressed in the patient's AD but felt that the patient's potential for recovery as well as the preoperative negotiation permitted the continuation of aggressive support.

In my experiences with these situations the sense of betrayal and self-doubt are very acute for the surgeons.  Colleagues have described to me acute feelings of causing harm to a patient: putting them through a major procedure and the post-operative care, for 'nothing,' when they could have just made the patient comfortable in the first place (for emergent procedures) or at least avoided the pain, cost, and human effort of an elective procedure.  If they had known the post-op care would have been unacceptable to the patient they wouldn't have done the procedure in the first place - these were surgeons who were comfortable with their patients declining life-saving operations (they enact appropriate symptom-directed treatment and call the palliative care team) - and didn't feel like they were pressuring their patients into operations, or hiding from them what the post-operative course could involve.

I think it's a very different perspective from what our patients/families feel in these situations (I'm speaking here about personal experience as a palliative consultant, so I should acknowledge that I'm describing a self-selected group of patients/families).  Most of the time I've witnessed these events the patients/families are grateful: they knew it was a long-shot, the doctors gave it their best shot, Mom knew there was a chance this would happen but was hoping it wouldn't, and it's ok that it didn't work out, now please can you make sure that Mom doesn't get a tracheostomy?  The 'problem' per se is not that the patient didn't know the risks, it was that they agreed to the surgery hoping none of that would happen.  And, yes now I'm introducing a boxing metaphor, the idea of going 'one or two rounds' then throwing in the towel is just plain fine with the patient/family.  It is of course not fine with the surgeon, who thought the patient was agreeing to a lot more, and may not have decided to proceed with the operation in the first place knowing that there was a 2 round limit.

It's a very different perspective than what we (and I'm not completely sure how I'd define what I mean by 'we' there - internists, family docs, palliative clinicians, etc.) bring to end of life situations.  Patient gets pneumonia and respiratory failure, wants to be full code and agrees to ICU level care, goes to the unit, gets intubated, and 10 days later when he can't be weaned from the vent, the patient or family says 'no he'd never want this, he wouldn't want a tracheostomy or gastrostomy tube, unhook him and make him comfortable.'  Generally most of us are just fine with this, we feel we did our best, patient didn't get any better, trach/PEGs suck, and even if there's a chance he'll live he has the right to say no to this.  It is very different for surgical patients, perhaps because  what happens is a consequence of the surgery (at least from one perspective).  In addition, I think this is due to a sense of deep personal responsibility that most non-surgeons don't have, and can't have (although as I've been thinking about this since reading the paper I wonder if there are similarities here with stem cell transplanters/BMT docs). 

I have a distinct memory of one of my attendings, early on in my palliative fellowship, talking with me about surgeons.  Those of us who didn't go through surgical training tend to think of surgeons as some sort of different species of physician: there's a stereotype of the egotistical, cowboy-hero surgeon who'll never give up, is unrealistic about 'his' patients' chances of living through the surgery and recovery, etc.  (Obviously not everyone feels this way about surgeons, but I certainly went through my residency internalizing some similar caricature of my surgical colleagues).  My attending told me something like 'Surgeons have a bond with their patients that is much stronger than internists. If you cut someone open, it changes your relationship with the patient in a way that internists just don't have.'  I thought to myself at the time that that was really weird.  Surgeons are cold heartless scapel jockeys - how could they have a bond deeper than my patient-centered, humanistic, whole-person approach?  Well like a good fellow I remembered what he said, and slowly came to realize he was right.

Ignoring any argument about whether this bond/relationship is any qualitatively 'deeper' or 'better', or if this applies to all surgeons etc. (because clearly the humanistic patient-centered approach doesn't apply to all non-surgeons), let's just agree that it is different and different in a way that's important to understand, and appreciate, and respect in our role as palliative consultants.  I think I entered palliative care training not understanding, and certainly not respecting, my surgical colleagues' different set of challenges, passions, and boundary issues, and I've come over the years to enjoy working with surgeons really more than any other specialty that consults me.  The 'challenges' and 'boundary issues' can be pretty intense, but they're at least more interesting than internist X not wanting to tell patient Y that their end-stage-dyspnea at rest-20m 6 minute walk test-COPD is a terminal illness because it might make the patient cry and how can you be sure anyway?

I've probably broken some blog etiquette by writing a post this long, so I'm not going to talk about how these situations can be prevented (or if they can be; part of me doubts they can, at least for emergent procedures), or how one walks the thin line as a consultant in these situations (advocating for a patient, but also responding to a devastated, or disappointed, or angry colleague) - please feel free to discuss this in the comments. 

*This is not a description of a real case I've encountered, although I've seen variations of these events frequently, but a narration of a case similar to what it sounds like they presented in this study.

While I'm disclosing things, I should probably mention that I work with 2 of the authors of this study, and for sure know at least one subject (who told me as much).

ResearchBlogging.orgSchwarze, M., Bradley, C., and Brasel, K. (2010). Surgical “buy-in”: The contractual relationship between surgeons and patients that influences decisions regarding life-supporting therapy* Critical Care Medicine, 38 (3), 843-848 DOI: 10.1097/CCM.0b013e3181cc466b

Tuesday, April 20, 2010 by Drew Rosielle MD ·

Thursday, April 15, 2010

National Health Care Decisions Day 2010

As many of you know April 16th is National Health Care Decisions Day, so I am not going to write up much about it but more to merely mark the day and encourage you to be active.

Things you can do:

  • Wear a White Ribbon
  • Wear a Button saying "Have You Had The Talk?"
  • Staff your organization's advance directive table
  • Change your Facebook Status or Twitter Status to state that YOU have advance directives and your family and doctor(s) know about them.

My Facebook Status will say: "I am 34 years old, I have no major medical problems and I have completed my advance directives. Celebrate National Health Care Decisions Day, Friday April 16th and change your status!"

If you use Twitter use the hashtag #HaveTheTalk to mark your tweet.  This is not official but it doesn't appear the people behind NHDD are endorsing #NHDD either.  So I picked #HaveTheTalk since it acts as a call to action and is much more intriguing then #NHDD or #advdir.  We will see if it becomes a meme.

Here are some links to some resources for completing advance directives. Personally I like the Center for Practical Bioethics Caring Conversations.

And yes the death and taxes reference was purposeful in selecting the date.

Thursday, April 15, 2010 by Christian Sinclair ·

Some Blog Upkeep Issues

First of all my apologies for a few dropped balls on our part this past two weeks.

1) A BIG apology to Tim Cousounis for twice messing up the link to Palliative Care Grand Rounds.  So here is the correct link.  I have triple checked it.

2) Many of you may have been getting more emails from us than usual.  It has been an issue with the program which 'picks up' our posts and puts them together into an email newsletter.  The pick up is usually around 1am Central, but recently it seems it has been picking up closer to 11pm.  Therefore it is missing some later posts which get picked up the next day.  We are moving our posts a bit earlier to accommodate for this.

3) Comment Spam: We have a group of hospices spamming our comments and so we have turned on full moderation.  So all comments will have to be approved by us before they go through.   Hopefully his won't last too long, and in a few weeks we can go back to immediate approval.  We have contacted the hospice agencies (under an umbrella group) and asked them to stop, but they have not. *GRRR* I am not posting the name here because I don't want to get them more attention and people clicking to their site, but the umbrella company sounds something like T*L*C H0m3 H0sp1c3. *AHEM*.

by Christian Sinclair ·

Monday, April 12, 2010

When Families Grieve: A Sesame Street Special

Some of you may recall the Sesame Street episode that featured the monsters reactions to the Death of Mr. Hooper from several years ago.  It had a profound impact on many children and parents helped by the fact it was aired on Thanksgiving Day.  The creators behind Sesame Street have decided to revisit the topic in a nighttime special called "When Families Grieve."  The episode airs Wednesday night on PBS stations (check local listings).

Interestingly this has nothing to do with the upcoming 'National Healthcare Decisions Day' on Friday April 16th (right after taxes...well you know what they say about death and taxes.)  This special episode emerged from the Talk. Listen Connect. program tailored towards military families dealing with repeated and prolonged deployments.  The program is supported by New York Life insurance who interestingly also provided a lot of seed money to Comfort Zone Camp, which was featured at the recent AAHPM meeting.

I am reminded of a quote from the Comfort Zone Camp video: "I thought I was the only kid who had a parent who had died."  This episode may help a lot of kids realize they are not alone.

In conjunction with the special episode they are distributing nearly 1 million multimedia kits to families and will have online resources as well. As with the Mr. Hooper episode, I am guessing they will approach this in a secular way and focus on memories of the deceased and they will likely teach adults a lot about death and grieving as well.

I have it DVR'd and will post a review after it airs.  If anyone has any comments while they are watching it please feel free to use this post as a conversation hub.

I have included a few videos below to give you a hint of what the episode will feature.

An preview of a clip from the show:

Monday, April 12, 2010 by Christian Sinclair ·

Rifaximin for Prevention of Hepatic Encephalopathy

Looking for a medication that can reduce a troubling symptom in an advanced disease and reduce hospitalization? Sound like the "perfect" palliative care drug? Read on and decide...

published a randomized controlled trial comparing the antibiotic rifaximin at 550 mg po bid versus placebo for the prevention of recurrent hepatic encephalopathy. While other studies have suggested that rifaximin might be beneficial in treating hepatic encephalopathy, they have all been small studies of short duration and looked at the treatment of HE rather than prevention.

More than 90% of patients in both wings received concurrent lactulose therapy. Subjects were followed for six months with the primary endpoint being the time to the first breakthrough episode of hepatic encephalopathy. A major secondary endpoint was the time to rehospitalization. Patients with the most advanced disease were excluded (MELD score greater than 25 and the presence of several other complications such as creatinine greater than 2.0 g/dl). The study was funded by Salix Pharmaceuticals, the makers of rifaximin.

The results:

  • Breakthrough episodes of hepatic encephalopathy were reported in 31 of 140 patients in the rifaximin group (22.1%) and 73 of 159 patients in the placebo group (45.9%). The hazard ratio was significant at 0.42. The number needed to treat to prevent one episode of HE is 4.2.
  • Hospitalization involving hepatic encephalopathy was reported for 19 of 140 patients in the rifaximin group (13.6%) and 36 of 159 patients in the placebo group (22.6%). The hazard ratio is reported as 0.5 and the relative risk reduction was reported as 0.5 as well. However, based on my calculation, the relative risk reduction is closer to 0.4. They report a NNT of 9. I calculate a NNT of 11.
6.4% of patients in rifaximin group died in the six month period vs. 6.9% in placebo group. Rifaximin was generally well tolerated. Two patients in the study group developed Clostridium difficile versus none in the placebo group.

The authors point out potential downsides to alternative antibiotics, including neomycin. Oral neomycin can cause ototoxicity, nephrotoxicity, and peripheral neuropathy. (According to Lexicomp, this risk is less than 1% but there is a black box warning.) Metronidazole use may be limited by nausea and peripheral neuropathy.

While I don't prescribe neomycin for hepatic encephalopathy typically, there have been two previous clinical trials comparing rifaximin to neomycin. One showed no significant difference between the two over 21 days. Another showed a small advantage to rifaximin that was statistically insignificant. I've read several recommendations against neomycin because, in addition to the potential toxicity, there is clinical trial data suggesting that it is no better than placebo, but that's based on one clinical trial in patients who had acute encephalopathy where the neomycin group resolved within 40 hours compared to placebo 50 hours (not statistically significant).

I couldn't find any other trials head to head of rifaximin versus other therapies. Metronidazole and vancomycin don't appear to be well studied in general (although the former seems to be the most commonly used secondary agent behind lactulose).

After reviewing other studies, I wish there were a wing of this study for at least one of these agents. All are significantly less expensive and it would be nice to have a better understanding of the toxicity in a larger trial in this population. The "risk" for including one of these agents in this industry funded trial would be that the agent might work and not be as toxic as everyone thought it might be.

All of that aside, hepatic encephalopathy and the associated need for hospitalization can be a major burden for patients with advanced cirrhosis and their families. The study excluded the sickest patients (the ones most likely to be seen by palliative care or referred to hospice). But while it may be difficult to know how these results apply to a sicker population, it seems plausible that they can be extrapolated. Anything that reduces the incidence of encephalopathy or hospitalization is appreciated, but because of the cost, it makes sense that it should still be reserved for those with recurrent encephalopathy. And if started, one should monitor for the expected endpoints and discontinued if no improvement is seen. One could argue that other antibiotics should still be given a trial, as well- I'm not convinced that this trial knocks other antibiotics out of the "on-deck" circle behind lactulose. Look for a jump in the use of this medication because of this study and the lack of data behind other agents, though. Rifaximin now has FDA approval for this indication.

If rifaximin use does become more commonplace, it will be interesting to note how hospices handle the drug. While reducing hospitalization is always a good thing and may potentially save the overall health system money (maybe even a LOT of money, if you agree with this study), a hospice that is reimbursed on a per diem basis might struggle to cover this expensive medication (especially since the average patient with refractory encephalopathy may have more days to spend at home while taking this drug!) This type of therapy can be a real pickle for hospices- proven to benefit, palliative only, and expensive.

Even though it may be possible to extrapolate the results of this study to a population with more advanced liver disease, I don't think this study demonstrates any role for patients with a very limited prognosis (days to weeks).

by Lyle Fettig ·

NYT Letters to the Editor on Palliative Care Dr. Pardi

Just to complete the loop in case some of you missed it, the NY Times posted several letters to the editor in response to the article featuring Dr. Desiree Pardi, a palliative care doctor who died from breast cancer.  Multiple letters were published including a joint letter from Dr. Lim and Robert Pardi as well as Anthony Back, Sean Morrison and Gail Gazelle.

Pallimed coverage and over 20 comments from readers can be found here, and a longer version of Robert's response can be found here.

by Christian Sinclair ·

**Correction** Palliative Grand Rounds Link Fixed

**This is a quick repost because I messed up the link in the previous post last week. The link is now fixed! Sorry Tim! And thank you astute readers!**

Palliative Care Grand Rounds is up at Tim Cousounis's blog Palliative Care Success.He has a good round up of the best in hospice and palliative care blogs from the past month.

Check it out as he picked up some posts from blogs not typically in my reading list too!

by Christian Sinclair ·

Friday, April 9, 2010

Rob Pardi comments on the NY Times article about his wife, Palliative Care Physician Desiree Pardi

The recent New York Times article featuring the story of Dr. Desiree Pardi, a palliative care physician with advanced breast cancer prompted a lot of responses on the NYT site (400+) as well as Lyle Fettig's post here on Pallimed.  Last night, we were able to hear Desiree's husband, Robert Pardi's view on the article and more about Desiree thoughts, actions and philosophy towards life.  With Robert's permission, I am reposting his Pallimed comment as an original post in order to make sure a more complete picture of Desiree can be understood.  Please share his words whenever you see a site, blog, or someone who may not have a rich appreciation for the complexities of her decisions or what palliative care truly means.

From Robert Pardi:

I am Desiree's husband and while I appreciate the numerous comments posted and the fact that this "story" has generated so much discussion, I need to convey that the article was very misleading and that many of the take away messages are wrongly presented.

My wife, knowing her life was going to be shorter than most spent her remaining years preaching the value of Palliative Care; something she herself accepted in her life.

The problem is most people lump Palliative Care and end-of-life care as one field of medicine. They are two separate disciplines. Second Palliative care is about providing symptom support throughout all stages of a chronic disease, it is about providing patients with a full understanding of their condition and treatments so they can live a life they want. Isn’t that what it’s all about ?

My wife never coerced people into ending a fight, she herself believed everyone should make that decision - but they have to know what they are getting into. They need to know the likely effects of treatments such as that from CPR, and know that sometimes getting on a respirator means you may never get off one. She believed in people needing to know the truth and planning accordingly.

She also believed no one should ever take away or overwhelm your coping mechanisms, her's being using me as her information buffer (inaccurately referred to as “denial” by many). We had a medical team and a wonderful oncologist for over 5 years who supported her while using me as that buffer. My wife was aware that she would most likely die in agony, and that financially I would be burdened with excessive credit card debt and emotional exhaustion. Yet, we agreed to go that route. I stopped working and learned how to function as a home health aide to support her.

I was well aware that our choices were setting her up for increased pain that she was willing to endure, but she told me that if a time comes when I need to make a choice to withdraw care that I should remember there is a difference between extending life and extending death. She said that if her body was too sick to be saved, she would not want to be "saved" if she could not function at a high level. We had that discussion, another aspect of Palliative Care - my wife lived and breathed palliative care everyday.

Please understand Palliative Care is about providing people the information they need (and avoiding false hope) so each and every one of us can make a decision about how we want to deal with a chronic disease. It is about quality in life and quality in death and tailoring a medical plan to achieve those goals.

She did not want Palliative care to visit with her in Boston because it overwhelmed her coping mechanisms, because she wanted me to be the buffer - not because she did not believe in it. Note that you are reading quotes from countless hours of being interviewed; their true meaning is lost in this "story".

One thing my wife wanted was for people to learn, to discuss, to explore the concept of palliative care based on her illness and I am thankful so many of you are discussing.

Rob Pardi

Friday, April 9, 2010 by Christian Sinclair ·

Palliative Care Grand Rounds April 2010: Palliative Care Success

***Link Fixed 4/10***

Palliative Care Grand Rounds is up at Tim Cousounis's blog Palliative Care Success.  He has a good round up of the best in hospice and palliative care blogs from the past month.

Check it out as he picked up some posts from blogs not typically in my reading list too!

by Christian Sinclair ·

Wednesday, April 7, 2010

Historian Tony Judt on Fresh Air Talking about his ALS

Terry Gross of Fresh Air recently interviewed historian Tony Judt, who has Amyotrophic Lateral Sclerosis. His candor is reminiscent of Art Buchwald's.

He introduced a new term into my hallway lexicon: "Facial tupperware" (to refer to his non-invasive ventilator).

The entire forty minutes is worth a listen but he poignantly tells Terry about his advance directive towards the end:
"In my practical terms what I've done long since is set out both in my will I had something called a proxy for health care, what is to be done with me under certain circumstances. That is to say if I went into the hospital for some minor operation but they had to put a tube down my throat and they couldnt take it out because it's sometimes very difficult with ALS, so they had to do a tracheostomy and pop a little tube down my neck from the outside to keep me going, I would very specifically say dont do it. And beyond that, if nothing goes wrong, I think I would probably want, as many other people in my situation I believe have wanted, to be allowed to die with minimal pain and discomfort. I don't know how that would affect my children. We've only talked about it in great abstraction. They're age 15 and 13. But I know that my wife, who obviously finds the prospect horrific, understands why I think like that.

.....I can only speculate on the basis of observing what it is like for ALS patients after that point and speculating on my own likely mood at that point. But I will tell you this, that at the moment, for good or ill, I am in charge of the spaces I occupy. I write. I dictate. I talk. I advise, etcetera. But if I was sitting in an armchair with bits and pieces of rubber sticking out of me and my son came over and said, you know, would you like a banana? Wink once for yes, wink twice for no, I dont think the interest of the conversation would get me past the sense that this is horrible. It's horrible for me but above all, horrible for them. There are things worse than death."

You can read his New York Review of Books essay "Night" here.

Wednesday, April 7, 2010 by Lyle Fettig ·

Monday, April 5, 2010

Historical Pallimed: March 2006

Here we continue our historical look at Pallimed posts from the same month in 2006 (our first full year of posting). It was in March 2006 Pallimed began having email subscription capability making it easier to get your fix. March 2006 was also the first time a Pallimed post was featured in Grand Rounds (Best of the medical blogs).

Here are previous posts in the series:

So here are some highlights from Pallimed circa March 2006:

Monday, April 5, 2010 by Christian Sinclair ·

NYT on the Death of Palliative Care Physician Dr. Desiree Pardi

NYT published an important article that should serve as a discussion piece for all palliative care programs and fellowships.

Dr. Desiree Pardi was the palliative care medical director at Weill Cornell Medical Center in New York. She died of metastatic breast cancer in 2009 at the age of 41. Her story provides palliative care clinicians an opportunity to reflect on how our own personal mortality interacts with our professional lives. I did not personally know Dr. Pardi. I write this post knowing that many readers did indeed know her, some very well. I express my sincere condolences to Desiree's husband, Robert, and family, as well as any colleagues that were affected by her death. I admit that my thoughts below are largely based on how I might feel, so my apologies if what I say is presumptuous.

From the article, Dr. Pardi's goals of care were very clear. She wanted to receive any therapy for her cancer that might extend her life (even if the therapy had little chance of modifying her cancer) but had made it very clear to her husband that if her death was imminent, she would want comfort measures. The article references the care she received from Dr. Betty Lim, another palliative care physician, who very aggressively treated a malignant bowel obstruction but then provided comfort care only when it became clear that nothing was working. This approach appeared to honor her patient's goals of care as a good palliative care clinician should.

Unfortunately, the article's overall theme undercuts the idea that patient autonomy and goals of care are central to palliative care in spite of giving a fine example in Dr. Lim's efforts. Rather, palliative care is painted as existing mainly for the purpose of cajoling patients to accept the unacceptable and to "be ok" with the idea of receiving only therapies oriented towards comfort.

You can and should read the article yourself (if you haven't already), but here are some snippets along with commentary.

Towards the beginning of the article, we read the following:

"In 2008, while on vacation in Boston, she went to an emergency room with a fever. The next day, as the doctors began to understand the extent of her underlying cancer, “they asked me if I wanted palliative care to come and see me.” She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on. "
Later, we learn that she was out for day of "whale-watching and visiting the ducklings in the Public Garden" the day prior to her ER visit and we also see the below picture of her:

Dr. Pardi had to have known the "party line" that palliative care should ideally be introduced early in a life-threatening illness, but she also certainly knew that other providers DON'T use palliative care that way, that palliative care is often not offered until it is felt that the prognosis is really poor and disease modifying therapies likely won't make any difference at all. When you combine this with the fact that Dr. Pardi had relinquished her right to discuss the extensiveness of her disease, preferring to have her husband talk with doctors (an unusual move, but well within her rights), the offer of a palliative care consult likely scared the crap out of her.
"She was admitted to Massachusetts General Hospital, and it soon became clear how far her cancer had spread. A doctor asked if she would like a palliative care consultation. She was shocked; she interpreted the question to mean that she had been identified as someone who was dying, and she did not think of herself that way."
What we can't know from this article is how the bad news was broken to her, if the news was broken at all given her communication preferences. We also don't know the timing of the offer for a palliative care consult in relation to any discussion of the cancer progression. While it's impossible to know for sure from this article alone, I'm guessing she had an ECOG performance status of 0 (zero), so I'm guessing she had little clue of what was coming even if she was waiting for the other shoe to drop. Her initial reaction of running away from a palliative care evaluation was normal even for a palliative care physician! She certainly had some denial of the potential that she had a poor prognosis, and I don't say that pejoratively. Denial is a normal response to receiving this type of news. She was, just like many of our patients, running away from the fresh idea of a poor prognosis rather than what palliative care has to offer to patients.

Later on as her condition reached a more advanced stage:
She refused to be treated by the renowned palliative care specialists at Mount Sinai whom she knew professionally, but her husband and her best friend, also a doctor, persuaded her to allow a palliative care doctor to oversee her care, with a team of gastroenterologists. She settled on a young doctor she had never met, Betty Lim.
Here's a very important point that I would not necessarily expect the NYT to highlight. Dr. Pardi was a young leader in our field. She seemed bound and determined to not let her disease get in the way of her career, poor prognosis be damned. She was in the prime of her life in what Erik Erikson would describe the "middle-adult" years. Death is not an age appropriate part of this stage of life, obviously, although this does not mean that people of this age don't die. The main challenge of this stage, according to Erikson's model, is maintaining generativity vs. stagnation. What is more threatening to generativity than the threat of death? Nothing. But the experience of a life-threatening illness is an intensely private experience that exposes our human frailties to those who care for us. Our field is growing, but remains small in many ways. As compassionate as I know many of my colleagues to be, the idea of laying all the cards out onto the table in front of the same people with whom I may wish to collaborate is, well, nauseating. I don't know if this actually played a role, but it's plausible.

"She preached the gentle gospel of her profession, The persuading patients to confront their illnesses and get their affairs in order and, above all, ensuring that their last weeks were not spent in unbearable pain."
But then it's concluded that she endures that type of suffering near the end of her life, perhaps unnecessarily. The assumption that would be easy for a lay person to make is that her bowel obstruction was avoidable, and that her end might have looked different if she would have "accepted" a palliative care referral earlier. This would be a dubious conclusion though. Perhaps she endured suffering with chemotherapy that others might have wished to avoid, but she was likely destined to develop a bowel obstruction based on the location of her disease- maybe it would have been a little earlier without chemo. She required large doses of pain medications because of the extent and location of her cancer, not (presumably) because of any decisions that she made.

I'm not so convinced that having patients "confront their illness" is part of our "gospel"- informing patients to the extent that they want to be informed certainly is, and so is helping patients to get their affairs in order. The two don't always need to go hand in hand. And in the end, Dr. Pardi appeared to stay true to the latter part of the message. She knew who she wanted to make decisions if she could not (her husband), and had extensive discussions regarding how he should approach those decisions if it were felt that she would be unlikely to recover. And he approached them with courage.

There are likely many more points to be unpacked from this article- please leave comments below.

One final thought: We are faced daily with paradox in our work. Death is not the enemy vs. the fact that nobody wants to die. Unnecessary suffering should be avoided or palliated vs. suffering as a transformative experience. As F. Scott Fitzgerald said:

"The test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function."
Thank you, Desiree and Robert for the gift of your story to our field.

by Lyle Fettig ·

Sunday, April 4, 2010

Best of March 2010 Comments

Pallimed had a great month of comments and a busy month of posting with 21 posts overall (average between 14-20 lately). We also welcomed two new bloggers, Brian McMichael and Suzana Makowski. Thanks for all your comments and keep them coming. Comments are so vital to blogging, so feel free to add your voice.

March 2010 posts with the most comments:

  1. Implantable Cardiac Defibrillators- Hospice Role in Deactivation? - 15 comments
  2. Emergency Room Visits by Patients with Cancer Near End of Life - 7 comments
  3. Palliative Care: (Un?)-Necessary Specialty - 7 comments
  4. Medicare Beneficiaries and Three Year Mortality After ICU Stay - 5 comments
  5. Several posts with 4 comments

March 2010 Posts with most visits:
  1. Implantable Cardiac Defibrillators- Hospice Role in Deactivation?
  2. Cancer Reporting in the Media - Guess what they report on?
  3. Emergency Room Visits by Patients with Cancer Near End of Life
  4. Symptoms, Suffering, Parents and Pediatric Palliative Care in End-Stage Cancer, Part 1
  5. Three Excellent Blog Posts For our Field

I read EVERY comment and while all of them are appreciated there are always a few that stand out and deserve more attention. You should probably read all the comments on Implantable Cardiac Defibrillators- Hospice Role in Deactivation?. So now to our 'Featured Comments':

Tammy Quest from Emergency Room Visits by Patients with Cancer Near End of Life:
The emergency department is often left to negotiate the last "time limited trial" - antibiotics, fluids, non-invasive ventilation - when the system has not responded or not responded to satisfaction of not prompting an ED visit. We do our best, with little information, often in the night, with an often non-decisional patient with no advance care plan. It can be lonely and difficult. The on-call doesn't know the patient, you don't have the information and the goals of care are blurred by intercurrent physical, spiritual or psychological unrest. The on-call hospice nurse doesn't know the patient or didn't know they called 911.

Clay Anderson MD from Palliative Care: (Un?)-Necessary Specialty:
dinosaur #1's commentary is partly about what palliative care and palliative medicine is, vis a vis the debate about language moved along by meier's and morrison's comments at AAHPM which i have reflected on at the AAHPM blog and gerimed, and also about wishful thinking. about language: in reality, however we in PC want to define or redefine or move upstream our field, mainly what we do and what we will do is take care of dying people, and that is what we love to do. yes we are good with symptom management and goals of care discussions but how we GOT good at that and stay good at that is taking care of dying people. as we move upstream, which we should, we can modify our practices and our language, but our defining core should not change. most primary care docs and specialty care docs don't do much of this and don't like it that much either. that is the wishful thinking part. lots of data show that, whether a FP or a med onc like me, most may say the know PC, can do PC, can do PC well, and do PC now....... but they don't do it!!!! that is why we are and will be needed. they don't do it and aren't planning on doing it any time soon, and patients and citizens and hospitals are demanding it, so here we are, in our nascent "specialty" (calling?), doing it, because it is what we want and need and love to do. so go for it, dinosaur #1, but show us how much of it you do and how soon in your practice, and don't expect many your colleagues to follow your example any time soon.

Barry from Cancer Reporting in the Media - Guess what they report on?:
For the most part, the general public is more often than not ill-informed on these critical issues. The media has consistently demonstrated a lack of understanding or ability to articulate clearly on these and other end of life issues. The public is not well served in coming to terms with dying and death or coming to grips with the complexity of end of life decision making. The media, for the most part, "ain't helping the situation." In an age that insists on brevity in the spoken or written word, there are few opportunities for in-depth reporting. The primary objective of the media, it seems, is to provoke, not necessarily to inform. [The Internet cannot be ignored. It's perhaps sufficient to point out that the Internet is embraced as an inexhaustible source of information ...but, information is not synonymous with knowledge.]
In palliative care there is oft heard the call to "educate" the public. The real need is to educate the "sources" of information that influence a person's decision making. For the one-on-one situation, it's the health professional who is best situated to facilitate discussion. In terms of the public-at-large, however, it remains the media – a double edged sword if ever there was one.

Joanne Kenen from Three excellent blog posts for our field:
Just wanted to add a thought about the other two posts you linked to about the politics of the "death panels" and how it affects the language you use about death and dying. Remember that the "death panel" brouhaha was part of an organized political effort to derail health reform. It started with right-wing commentators a few weeks before Palin's Facebook comment -- which was pithy and powerful but Palin wasn't where or when that all began. Your blog linked, in fact, when we wrote about this in July, before the Palin comment and the start of the town meetings. It was about the emergence of end of life "rationing" as a vehicle for attacking reform. So yes, it touched all sorts of chords and fears deeply ingrained in our culture and our medical system about death. But it also was designed to serve a political purpose and to tie into fears and beliefs not just about death but about the size, role, and power of government. And about who, right now, has the power to govern.

Brian McMichael from Origins: Physical medicine and Rehabilitation to Palliative Medicine:
We volitionally climb into that tight space which our patients have come to occupy. Often suffering the glaring impotence of our attempts at intervention. Yet we abide with them sometimes only tinkering at the margins of pain and suffering and loss. So, to me it is a strange and arbitrary decision not to continue the care of our patients into the end of their lives; these patients and their families whom we have come to know so well. To me it is better and simply more fitting to our type and style of patient care to add some related skills to our repetoire and extend our abiding just a little further.

Sunday, April 4, 2010 by Christian Sinclair ·

Thursday, April 1, 2010

Scientists Successfully Teach Gorilla It Will Die Someday

Well it's April Fools' Day, and so I thought I'd fool everyone by posting, even though I'm not actually emerging from my Pallimed vacation yet (still completely engaged by the process of home selling-buying-moving, or 'playing HG-TV' as Christian so kindly put it last month).  It's been fun to just read the blog and comments for a month, and to see our two newest contributors contribute!

I thought, however, that given the date this recent video newsclip from The Onion was appropriate.  As always from The Onion, it is spot-on, and in very poor taste. Watching it, I thought to myself Is this what some of our colleagues think we do?

Scientists Successfully Teach Gorilla It Will Die Someday

Thanks to Dr. Steve Rommelfanger for forwarding that to me.
PC-FACS (firewalled at AAHPM - members only) also published today an April 1st edition which is worth reading.

Thursday, April 1, 2010 by Drew Rosielle MD ·

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