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Today, the Institute of Medicine released a new report called "Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life." I had the pleasure of serving on the committee for the past 18 months*, which makes me so excited to finally share this report publicly. I hope you will all join the wider health care community in dissecting, analyzing, and disseminating this report.  Without your involvement from this point forward, this will merely be an impotent academic exercise.

Nothing in this report should be shockingly new to anyone in hospice and palliative care (HPC), but you now have this a tool to construct an exciting future where more people get excellent whole person care. All the organizations we work with (especially those outside of HPC and outside of health care) need to understand the recommendations and work to try an implement them locally and systematically. We are a large voice, but we are barely speaking as one.  NHPCO via Hospice Action Network and AAHPM have some great resources on how to work with your local and federal legislators. Let them know you read this and it is important to you!  Share what you find important about this report with your friends and family.

The key areas covered include:

• Delivery of person-centered, family-oriented care
• Clinician-patient communication and advance care planning
• Professional education and development
• Policies and payment systems
• Public education and engagement

Two of the most interesting issues to me in this report, are 1) the call to payers and policy makers to integrate medical and social services and the 2) the emphasis on teaching primary palliative skills to all disciplines and specialties.  We can't get to major change with out reforming how the money flows through the system and incentives action over communication, and we as specialists can't satisfy all the palliative care needs in the system, so we need to ensure a basic palliative skill set for all health care providers.

The last major reports were in 1998 (Approaching Death: Improving Care at the End of Life) and 2002 (When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families) and they helped spur a great growth in palliative care as a specialty for physicians.  We have a tent pole now it is time to raise the roof.

Major articles featuring the IOM report (will be updated- check back):
New York Times - End-of-life Care needs Sweeping Overhaul, Panel Says
Kaiser Health News - Dying in America is Harder Than It Has To be, IOM Advises
Science 2.0 - US Health System Doesn't Think About End of Life Care - Yet
Business Insider - US Needs Better End-of-Life Care, Which Might Cut Costs: Study
Washington Post (blog) - It's Time to bury the 'death panel' myth for good. Is this the way to do it?
the kb Group (blog) - The New IOM Report on Dying in America
Geripal (blog) - New IOM Report on Dying in America
Forbes (blog) - Reimagining End of Life Care

*In case you have not been a long time reader, you may not know that I highlighted some potential gaps in the IOM committee when it was first announced in January 2013. While it was not meant as a means to get on the IOM committee (I applied the normal way and was initially not selected), some people put in my name to the IOM, and they added me as a member in February 2013.  It was really a fantastic experience and I learned so much from the many smart people on the committee. I would have loved to write about it while I went through it and share it with all of you, but the IOM review process stresses impartiality and confidentiality as you build the report. But now the report is out in the wild and I hope you will join me in spreading this important information.

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*UPDATE 11/7/12 9:45am ET: Prop 2 was defeated 51-49%, so PAS/DWD will not be legal in the state of Massachusetts.*

Aren’t we all glad that is over!  With all the attention on the Presidential race, it was easy to lose sight of some key issues which could have a large impact for palliative care providers. It was surprising how little national attention was given to Massachusetts Prop 2 on legalizing physician-assisted suicide (PAS) in the run up to the election.  I was expecting this to even become part of the debates since the connection between health care and Massachusetts was obviously in play.  Part of my reluctance to blog on the topic in the past month may have been related to an irrational fear of ‘death panel’ language creeping up again on the national scene.

I expect Death With Dignity (DWD) ballot initiatives will continue in the future, building off the model established by medical marijuana initiatives in the past two decades.  Both PAS/DWD and medical marijuana legalization will impact how we as hospice and palliative care clinicians operate in states with a broad range of laws.  For instance, with increasing access to medical marijuana and medically hastened death, should we re-examine how we address these complex issues in fellowship training?  What about educating the new hospice medical director who does not have a depth of hospice experience yet?  How do we deal with conscience clause laws in various states?  Is there an incentive for HPM advocates to rail against PAS/DWD and choose the potentially self-serving argument of increasing funding for comprehensive hospice and palliative care services?  

Frankly I feel we as a field have not addressed these issues very well.  We have fought well to become established in modern medicine, and these topics are fraught with danger when discussed in the public arena.  Sure we may feel very confident when in a family meeting addressing a request for hastened death, but those intimate conversations do not lend themselves well to media sound bites and internet commentary.

This week I’ll explore some of these questions about hastened death and other current election results and how it affects our work.  Right now it looks as though Prop 2 will pass 51-49% with 93% precincts reporting.  The raw numbers show how close this is (as of 02:30am ET):

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The illness and death of the iconic Steve Jobs have stimulated much conversation both online and off. I won't rehash that now.

In case you missed it, NYT published the eulogy delivered by Steve's sister, Mona Simpson, who is a novelist and English professor.

"One time when Steve had contracted a tenacious pneumonia his doctor forbid everything — even ice. We were in a standard I.C.U. unit. Steve, who generally disliked cutting in line or dropping his own name, confessed that this once, he’d like to be treated a little specially.

I told him: Steve, this is special treatment.

He leaned over to me, and said: “I want it to be a little more special.”

Intubated, when he couldn’t talk, he asked for a notepad. He sketched devices to hold an iPad in a hospital bed. He designed new fluid monitors and x-ray equipment. He redrew that not-quite-special-enough hospital unit. And every time his wife walked into the room, I watched his smile remake itself on his face.

For the really big, big things, you have to trust me, he wrote on his sketchpad. He looked up. You have to.

By that, he meant that we should disobey the doctors and give him a piece of ice."

A remarkable blending of the mundane with the extraordinary. He put his two pant legs on and wanted his ice chips just like everyone else.

Oh, how I'd love to see those drawings.

The eulogy hints at how Jobs' illness and treatments interacted with his goals of care (which I'm guessing he was able to clearly define) and quality of life. Given the amount of discussion in our society which surrounded his illness and death, how special might it be to know how he went about making various decisions related to his health care? That could be a beautiful contribution to our society. There is no doubt that limitless financial resources played a role in the care which he received, but he wasn't in the ICU or even the hospital when he died.

"We all — in the end — die in medias res. In the middle of a story. Of many stories."

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This week the New York Times talks about the rising costs of providing hospice care in America with a particularly juicy hook about a nearly $25 million whistle-blower settlement against an Alabama hospice.  From there it talks about the focus of some hospices to seek patients who are likely to have longer lengths of stay, like dementia and stroke.  One research analyst even goes as far to say "It's a lucrative business, at least under the current reimbursement system."  They also feature an inspector general report that documentation for hospice patients in nursing homes was lacking. 

Not a good start from a newspaper that has actually been quite kind to hospice in the past.  The rest of the article goes on to discuss the various fixes including every hospice medical director's new task: the face to face certification visit.  (We have not yet dedicated a blog post to face-to-face home visits for certification, but one is in the works so we can has that out at a later date.)

But the article leaves out a lot and I feel it is pretty one-sided.  Apparently Don Schumacher, head of the NHPCO, has found some flaws in the article too as he is communicating with the NYT editorial board.  There is relatively little about potential changes to the payment structure to focus greater reimbursement during the first 7 and last 7 days of service when need is thought to be the greatest.  The article does not talk about or reference the article by another NYT reporter from 2007 with the title "In Hospice Care, Longer Lives Mean Money Lost" about the aggregate cap. Nor did it quote the Duke Study that found hospice care saved Medicare an average of $2,300 per beneficiary (OPEN ACCESS PDF), calling hospice “a rare situation whereby something that improves quality of life also appears to reduce costs.”  Yeah, they missed some stuff.

Which is not to say we need to look closely at fraud issues.  Good oversight is important for a multi-billion part of the health care system, but we have to realize that every problem started out as the solution to another problem.  The system is perfectly designed for the outcomes it gets.  So let your legislators know about what hospice means to you.  Talk to your organizations and actually answer the advocacy emails that moment instead of promising to get back to them later.

As the NYT usually does there is no ability to comment on the article but there is a linked blog post at "The New Old Age" which allows for comments.  As of this writing there are 64 comments.  Here are a few I thought stood out:

It is amusing and annoying to be complaining about the costs of hospice care, when in fact hospice patients are forgoing the ER visits, hospitalizations, specialists' visits, procedures, and many medications that Medicare would instead be covering if not for the patient making a decision to pursue comfort care only. So, what was the cost SAVINGS to Medicare by having these people on hospice, even though they stayed on longer than usual? Alot.- ras

I don't even believe desperate old people are gaming the system via hospice. But if they are, it's because this country has utterly failed them, taken payroll deductions for a lifetime in exchange for medical care in old age, and then only given the kind of medical care 70-year-olds need, not 90-year-olds. Shame on us. - jane gross

Hospice is a critical service that is offered to all. It is necessary, compassionate, and well run. So, if we discontinue it or cut services, we are a nation without merit and compassion. We will not only be third world, we should not be in this world. - Julie

The article disingenuously ignores this broader care issue while it exploits an example of an Alzheimer's patient. Please, NY Times, get perspective on the bigger picture. Help the US face its fear of dementia that keeps us in denial and prevents us from preparing to fight a huge healthcare tidal wave. Take more leadership and make a difference. - Suzanne

So it's too expensive to have an MD check on hospice patients once every six months? The health care industry has become even more shamelessly and barbaricly greedy than I thought. - Cowboy Marine

TAYLOR JR, D., OSTERMANN, J., VANHOUTVEN, C., TULSKY, J., & STEINHAUSER, K. (2007). What length of hospice use maximizes reduction in medical expenditures near death in the US Medicare program? Social Science and Medicine, 65 (7), 1466-1478 DOI: 10.1016/j.socscimed.2007.05.028

Photo credit: Flickr user:  castle79

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Quick media round-up from this week:

• Hospitals increasingly offer palliative care - Washington Post
• Critical (Re)thinking: How ICU's are getting a much-needed makeover - Wall Street Journal
• Special needs, Special care (Pediatric Palliative Care) - Boston Globe
• Many doctors still focus more on cure than managing pain - NPR
• Hit by the reality of cancer treatment - NYT Well Blog

All of these were making the rounds on Twitter today with lots of clicks and shares from people not in our field which is always nice to see. I am not going to go into detail on any of these articles tonight, but please share them with your team.  I particularly liked the WSJ and Boston Globe one.  The NYT blog deserves its own blog post to discuss the importance of language.

If any Pallimed Reader wants to write up a guest post on the WSJ, Boston Globe or NYT articles, email me your 250-500 word write up christian@pallimed.org. (Yes we are open to guest posts, more details to come! See your name in lights, or at least the faint glow of some strangers laptop.)

The NPR and WaPo articles were covering the basics.  Obviously important but not sure you will gain a lot from reading those.  And interestingly those were both written by the same person Michelle Andrews from the Kaiser Health Network.  Not sure why they are covering palliative care issues so much, but keep it up if it gets published.

This convergence doesn't quite rival the 2010 St. Patrick's Day journal smorgasbord of palliative care but is still a pretty impressive grouping of media outlets in just a span of a few days.

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Figuring out how much any patient or family member wants to know about the future chances of cure, disability or death is a delicate dance.  Lyle blogged about prognosis disclosure earlier this week and we have covered some of the research articles here before.  But in analyzing the research it is always good to have a narrative to help humanize the story.  The NYT Well Blog is following Dr. Peter Bach, a cancer researcher, as he navigates the medical system with his wife who was recently diagnosed with breast cancer.  The series can be found under the title "The Doctor's Wife."  This week he writes a great piece about his frustration in getting probability and prediction information from his wife's cancer doctor.

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Many of you have at least heard about if not read one of the following books in the past several years:

• Joan Didion’s “Year of Magical Thinking” (2005), (Pallimed: Arts review here)
• David Rieff’s “Swimming in a Sea of Death” (2008),
• Anne Roiphe’s “Epilogue” (2008)
• Roland Barthes’s “Mourning Diary”(2010).

Two new contributors to this growing genre are Joyce Carol Oates’s “A Widow’s Story,” (2011) and Meghan O’Rourke’s “The Long Goodbye,” (2011), and the New York Times did us the favor of letting us in on what drove these authors to write about their grief.

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A couple of recent NY Times articles.

The most salient one is a discussion of the movement in Washington State to officially DO SOMETHING about prescription opioid abuse, coming on the heels of course of the FDA rejecting the current REMS plan as, essentially, not going far enough.  The article basically discusses the discussion in Washington about what to do; no formal new plans have been offically proposed as far as I can tell from the article.  This is what they mention that is being discussed:

The regulations would not affect how narcotics are used to treat patients with cancer or those at the end of life because experts agree that such patients should receive as much pain medication as necessary.  
The panel is expected to require that, among other things, doctors refer patients to a pain specialist for review when their daily medication increases to a specified dosage level and they do not show improvement. The specialist can then determine whether to continue the drug, reduce it or use other treatments like physical therapy.

This is an exemplary quote from the article: 

“This is not just about addicts but little old ladies with arthritis starting to die because of this kind of medical practice,” said Dr. Alex Cahana, a pain specialist involved in devising the regulations in Washington State.

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

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

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

(Photo by Flickr user: brykmantra)

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