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by Christian Sinclair

August 2016 has left the building along with a lot of heat, rain and wildfires.

Here is a recap of all of our posts from August 2016. We know there are some you may have already bookmarked, but forgot to read, or maybe you liked it so much you want to share it again.

Make sure to follow, engage, like and comment with us on Facebook, Twitter, Google+, Pinterest, Tumblr, Instagram and LinkedIN.  We always appreciate it when you recommend us to your peers and social media makes it very easy!

Communication

• Palliative Chemotherapy: An Oxymoron by Rebecca Gagne Henderson

Humanities/Media Reviews

• Redefining "Death in Dignity": Sherwin Nuland's 'How We Die' by Vivian Lam

Interview/News

• Behind the Scenes: Media Watch by Barry Ashpole

Narrative/Opinion

• What happens when it is you? by Michael Fratkin

Research/Education

• August 2016 Journal Review by Christian Sinclair
• Trisomy 13 and 18: When a lethal condition is no longer lethal by Jenni Linebarger
• Worse than Death? ...Dependence by Ross Albert
• FOUR Score: Coma scales and prognosis in the ICU by Drew Rosielle

Comment Shout-out's for July (in no particular order):
Clay Anderson, Drew Rosielle, Lyle Fettig, Anthony Back, Lizzy Miles, Gerg Gifford, Kyle Edmonds, Kathy Kastner, Karl Steinberg, Lynne Kallenbach, Emilie Clark, Robin Kleronomos, Anthony Herbert, Tom Quinn, Karen Kaplan, Lisa LaMagna, Sidnee Weiss-Domis, Daniel Miller, Robin Youlten, Rebecca Gagne Henderson, Linda Dolan, Andy Probolus, Amy Getter, Alex Smith, Gerald Tevrow, Elizabeth Lindenberger, Vikranta Sharma, Elaine Glass, Matt Rhodes, Vickie Leff, Paul Rousseau, Emily Riegel, Will Grinstead, Jeanne Phillips, Staci Mandrola, Julie Koch, Michael Pottash, Thomas Reid, Pippa Hawley, Kat Collett, Michael Fratkin, Julie Christenson and a few anonymous people.

Highlighted Comment for August 2016
Frustrations with words not living up to their promise continue to be a theme this month. Thomas LeBlanc had a great comment on the challenges with the term palliative chemotherapy.

Let’s not throw the baby out with the bathwater; the best way to palliate cancer-related symptoms is to actually treat the cancer (if it’s treatable, and if the patient is not too frail to tolerate the treatment). The enemy here isn’t the chemotherapy, it’s the inappropriate use of it in patients who are too ill, or who have resistant disease, or whose goals can’t be met by the treatment. The enemy isn’t the chemotherapy, it’s the notion that patients should be forced to choose either cancer treatment or good palliative care. Instead, I believe they should be able to get both, and we should all work together as a team, oncologist and palliative care clinicians alike, to do what’s best for each patient at each step along the way.

Social Media Highlights

• Most popular Pallimed Facebook post: Condoloneces to Amedisys hospice on the death of Bill Borne - Reached 15k+ people
• Most popular Pallimed Twitter post: We need to be frank about death with terminal patients via @newsweek - 91 Engagements
• Most popular Pallimed Instagram Post: "That's all I wanted: for someone to look at me and listen to me, but in some beautiful and artisitc way." - Gene Wilder - 453 impressions

"That's all I wanted; for someone to look at me and listen to me, but in some beautiful or artistic way." - Gene Wilder #genewilder #willywonka #quotation #quote #hpm #hapc #palliativecare #listening

A photo posted by Pallimed (@pallimedblog) on Aug 30, 2016 at 1:11pm PDT

Passionate Volunteers and Writers Wanted
Do you love hospice and palliative medicine? Got something to say or find interesting things to share? Want to reach nearly 40,000 people with your ideas? We do this with a volunteer staff of ten, but we could use more regular volunteers.

If you are interested in writing for or working with us at Pallimed please check out the Pallimed Opportunities page and complete the form at the bottom. If you want to help we have something you could do! Like write this simple monthly review post (this would be really easy to hand off)! Or join our team of social media ambassadors to help run one of our social media accounts (especially with Facebook, Pinterest, LinkedIn, Instagram and Tumblr) - we do on the job training!

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas Medical Center and editor of Pallimed. When not advocating for health care professionals to use social media you can find him playing board games.

Image Credit: Lionello DelPiccolo via Unsplash CC0 1.0

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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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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.

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Some readers on last year and this year's survey mentioned not being aware about the comments, so to highlight some of the great insights found in the comments section, I present to you a new feature, The Best of Pallimed Comments: March 2009. Come join us in the comments section.

My Favorite Comment this past Month was from Amy Abernethy regarding the Supportive vs. Palliative Care name:(an excerpt)

"So, in 2006, I conducted an e-mail survey of everyone I knew that might answer (N about 225 of medical and non-medical people) and they helped me rename the program to the "Duke Cancer Care Research Program." (www.cancer.duke.edu/dccrp/) Referrals soared and our trials get completed; oncologists welcome us to hang out in their clinics and talk to any potentially eligible patient appropriate for our studies. These studies run the spectrum from pain and dyspnea to spirituality and caregiver distress. Our nurses also help out with clinical care needs, and palliative care patients are actively referred to my clinic by my colleagues for end-of-life care."

Other comments on this post are very rich with great information about this dilemma.

Two posts tied for the most comments with 13 in March: Hospice and Palliative Care Tweeple and Do Not Attempt Resuscitation vs. Allow Natural Death

On the Do Not Attempt Resuscitation vs. Allow Natural Death post, some of the great comments included Leigh:

"We are struggling mightily with the issue of goals of care vs. DNR "status" in my instution. Inappropriate (at times) inferences are drawn from the presence or absence of a DNR order. For example, I had a very difficult time getting a venting gastrostomy placed in a DNR patient because she was DNR ("we don't do procedures on these patients"). It happens on the other end of the spectrum as well, this is part of why patients, particularly those who are underfunded, are suspicious of DNR. We are working toward separating our processes--so that the code status orders pertain only to what happens at the moment of death, and there is a separate/ongoing process of goal setting to work out the rest."

Later she also added an important point about what The Joint Commission considers a 'sentinel event':

"Do-Not-Resuscitate patients who do not receive the same level of care that patients without Do-Not-Resuscitate orders receive."

And Paul McIntyre:

"I'd argue that comfort is a goal at each step. The problem with separating "comfort" as a separate category - may imply that sx control is less important in 1. & 2. Chest 2007;132 had a good point-counterpoint on CPR, one author arguing against autonomy/choice in pts with predictably poor outcomes."

A family member Gail Rae chimed in with a great question:

"What, exactly, in medical terms, does "curative" mean?"

And in the end Drew leaves us with a great comment to tie everything together:

"these sorts of goals-->care plans can be highly individualistic, and based in individual historical precedent (e.g. for whatever reason the TPN is staying on, or XYZ), and cramming them into one-size-fits all order sets or phrases is often not appropriate. That, to me, is ok, and frankly a good thing - where is it written that these things are supposed to be easy - as long as you have the time and institutional culture to put all this out."

In a post on Hospice Patients Feeling Abandoned by Doctors comments focused on the system:

"The perception of abandonment may be rooted in mismanaged expectations. In the generation of aged currently in the "python" there is a perception MY doctor, possibly a remnant from our previous health care system without DRG's and managed care. These people may need more expectation management than the next generation who are accustomed to THE doctor, THE nurse practitioner, and/or THE physician's assistant. We can remember that there is always with us another unhealthy client, the System."

And Gail Rae gives expands in her comment on this scenario:

"My mother did not forget about her former PCP but expressed, a couple of times, even though she liked him, that she was glad she "never ha[d] to see him again," because, inevitably, when we saw him, it always meant more of everything, rather than less.
Hospice care, as well, encouraged me to lighten my medical hovering over my mother, to her (and, finally, my) delight."

Drew and Tom have a great exchange fleshing out the post about the JAMA Religious Coping and Aggressiveness of Care study

And finally Lyle, David and Angela give their takes on the level of detail in CPR informed consent talks.

Feel free to join in the fun and belly flop in the Comments Pool! Maybe your comment will be featured next month.

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For the many readers of Pallimed who have not commented before I would really encourage you to break your silence and be proud to say 'long time listener, first time commenter.' Here are some of the reasons why you should comment on blog posts:

1. Comments Are Peer-Review: Discussing a counter-argument to the original post helps balance the viewpoint and encourages the writer and other comments to better define the original point.

2. Comments Make a Community: By contributing you now are part of a small network of Pallimed commenters which provides a foundation for a growing community. Often times the commenters answer each other's questions before any Pallimed writer gets a chance to reply.

3. Comments Guide the Content: Sure blog topics are what we decide to write on, but how we decide to write on is influenced by great comments which open up new areas of interest.

4. Comments Are Currency: Comments help any blog writer realize they are not talking into thin air, which is what it feels like when you first press 'publish post.' And that currency can be cashed in as goodwill from any of the blog writers. If we get a request for more info or a favor from someone who comments often, we will be much more likely to reciprocate.

5. Comments Make a Better, Smarter Blog: Comments often lead to new resources, new links and new insights making the blog a better resource for everyone. Also like a huge crowd sourced editors desk, if you find a broken link, a misspelling, poor grammar, tell us. We'll fix it, then thank you for helping all future readers.(Edit 9/8/10: Found two errors, but no one told me. *Sniff*)

6. Comments Make you a Pallimed Author: Drew started this whole thing, but Thomas Quinn, Lyle Fettig and Christian Sinclair (me) all started out as commenters before becoming formal contributors.
Barriers to Commenting:

-Well now you know. And knowing is half the battle.

-See below.

-A comment doesn't have to be a long counter-point, it can express general agreement, a variation on a theme, a new question, a request for blogging on something different, etc.

-Comment anonymously. Don't say anything inflammatory. Say anything you would be willing to defend on the radio or in court. Talk about things more generally. But using your own name may actually establish you as a thought-leader and for continuity purposes lets us know who is doing the talking. Is anonymous one person or 45 people?

How to Comment on a Blog Post:
Pallimed uses DISQUS for our commenting system and you may likely find it on several other popular sites like NPR, Entertainment Weekly, and MLB.com.  DISQUS allows several sign in options including Facebook, Google, and Twitter.  You can also create a DISQUS account if you comment often or do not want your comments associated with your social networks.  DISQUS also allows for voting up or down comments, which is helpful in letting the cream rise to the top on posts with several comments.  If you are really particularly interested in a post, you can always subscribe to the comments by email located at the very bottom of the post in gray.  DISQUS allows for posting links, videos and pictures, but this will usually be flagged for moderation.  If you comment often, we can add you to the 'Do Not Moderate' list so your comments always go through.

Click here for our full comment policy.

If you have questions, please email Pallimed editor Christian Sinclair, MD, at christian@pallimed.org.

Last revised June 26, 2013