Tweet

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.

• 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?)

Tweet

• January 2006
• February 2006 (Soon to be published)
• March 2006

So here are some highlights from Pallimed circa April 2006:

• Drew blogs about the 'terrible choice' for patients who elect hospice to forego any curative interventions and what level of burden they would be comfortable with.
• Will the new tanning tax in the health care reform bill have any effect on chronic opioid use?  Here is the one article that might give you a hint.
• In four years the FDA still has not heard my plea to add "Indications and Methods for Discontinuation" as a category in every medication insert.
• A good one to discuss with your favorite chaplain: Does intercessory prayer help or harm CABG patients?
• Should we have more open-access to medical journals? NEJM and Drew have a little discussion.
• Opioid battle royal! Muscular morphine versus Oxycodone the Obliterator in the Visceral pain challenge!
• The BBC had a feature on 'How to Have a Good Death.' Sadly the main link is broken, but the other links all work dandy in this post.

Tweet

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.

Tweet

[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).

Schwarze, 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

Tweet

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.

Tweet

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*.

Tweet

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).

Tweet

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...

NEJM 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).

Tweet

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.

Tweet

**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!