Thursday, September 8, 2016

Number One Palliative-Themed Movie? Wit

by Amy Clarkson

(Margaret Edson, author of Wit, will be speaking at the 2016 Palliative Care in Oncology Symposium, so we are sharing this review from our Arts and Humanities site, originally published in 2009. - Ed.)

There are many movies out there with palliative themes, as we can attest to with our top 10 movie post, which garnered much comments. One of my all time favorites, also made number 1 on our top 10 palliative-themed movies list; Wit.

I first saw this movie in medical school. In fact, according to the IMDb, this movie is known for being shown at medical schools as an example of how not to practice medicine. Also, the plot deals with dying, so it's all the more relevant to those of us who care for dying patients.

The plot is this: An English lit professor, known for her high expectations and little compassion in the classroom is diagnosed with ovarian cancer. The movie shows her experiences from diagnosis to death. Her last weeks are spent in the hospital, undergoing rigorous treatment. She is alone, except for the nurses, attending and fellow who treat her. Through her reflections and memories there is a definite parallel between her heartless days teaching and the heartless medical system she is now in.

The movie is based on a play by Margaret Edson and this monologue, play-like background is the inspiration for the screenplay, making it unique. The soundtrack is simple with only 4 pieces listed. My favorite piece is "Speigel im speigel" or 'Mirror in a mirror' by Arvo Part. It is played often in the movie, the simplicity of the cello and piano is also melancholy, leaving the viewer with the feeling of being alone, just as the main character is.

I love this movie not just for it's ability to pierce me with its sad realities of the medical world, but also for it's subtle sub theme about death. All through out the movie we are bombarded with a certain text from a John Donne's Holy Sonnet 10. The main character was a John Donne expert and specifically recalls the punctuation differences pointed out at the end of this poem by her mentor.

The last line of the sonnet entitled "Death be not proud" is "And death shall be no more, Death thou shalt die." The version our main character had found was different "And Death shall be no more; Death thou shalt die!"

Here is the discussion with her mentor on the punctuation differences, talking about the version with the comma: "Nothing but a breath, a comma separates life from life everlasting. Very simple, really. With the original punctuation restored Death is no longer something to act out on a stage with exclamation marks. It is a comma. A pause. In this way, the uncompromising way one learns something from the poem, wouldn't you say? Life, death, soul, God, past present. Not insuperable barriers. Not semi-colons. Just a comma. "

If only the main character's death could have been so simple. Yet of the many ways death is portrayed in films, her portrayal is haunting. No one should have to die like this, without dignity and respect (ignoring her DNR)...alone in a hospital. Yet it is haunting, because of how real this type of death is. It is the antitheses of a palliative care death.

I've included a clip of our main character (Emma Thompson) thinking out loud. It's a lovely introspection of what's she's dealing with. Another clip has been taken down from YouTube, but when originally posted, it is a beautiful moment when our character actually gets her one and only visitor, her old hard-nosed mentor. The simplicity of human connection in the clip, with the Arvo Part soundtrack accompanying, makes me tear up every time.
I'd also suggest reading John Donne's Holy Sonnet 10 "Death be not proud" (This version uses a semi-colon and no exclamation!)

Dr. Amy Clarkson is a hospice and palliative care doctor in Pratt, KS, and former co-editor of the Pallimed: Arts and Humanities Site.

Image Credit: Still Image from Wit

If you are interested in writing reviews for old or new books and films, please check out our Pallimed Opportunities page. - Ed.

Thursday, September 8, 2016 by Amy Clarkson ·

Wednesday, September 7, 2016

What Makes Up High-Quality Primary Palliative Care in Oncology?

by Ross Albert

I'm surprised that I’m not hearing more about the recent ‘Guidance Statement’ put out by the collaboration of ASCO and AAHPM on “Defining High-Quality Palliative Care in Oncology Practice.” (OPEN ACCESS PDF) It’s a report that provides some very interesting insight into what pieces of primary palliative care should be part of general medical oncologists’ practice.

When I read it the report, I was pleased to see that it was published in ASCO’s journal, and I noted the impressive list of authors. My eyes briefly glazed over as the discussion moved to Delphi methodology, but a few quick Wikipedia searches on study-design later, I was back on track, diving into the data. I am, of course speaking about that in jest—these statements and guidelines need to be rigorous and they need to be done with well-defined methodology.

The group essentially did the following:

  1. Gather a bunch of very smart oncologists and palliative care professionals.
  2. Give them a list of nearly 1000 statements of specific actions that might be part of high-quality primary palliative care practice in oncology.
  3. Have them decide if those items are definitely/maybe/not part of primary palliative care that oncologists should regularly be doing.

The panel also grouped these practices into “Domains” for organization: End-of-Life Care, Communication and Shared Decision Making, Advance Care Planning, Appropriate Palliative Care and Hospice Referral, Symptom Assessment and Management, Carer Support, Coordination and Continuity of Care, Psychosocial Assessment and Management, and Spiritual and Cultural Assessment and Management.

The panel’s views on the different domains were informative. The highest percentage of items which the panel endorsed as “Included” in primary palliative practice by oncologists were in the realms of End-of-Life Care, Communication and Shared Decision Making, Advance Care Planning—more than 75% of items assessed were deemed to be part of standard practice. The lowest percentage was in Coordination and Continuity of Care, Psychosocial Assessment and Management, and Spiritual and Cultural Assessment and Management—with less than 50% of the items assessed deemed part of standard primary palliative practice by oncologists.

These numbers don’t mean that oncologists aren’t interested in any Coordination of Care though—It means, for example, that while the item “Communicating current prognosis to primary care [provider]” was thought to be included within their regular scope, that “Obtaining family/surrogate feedback regarding clinic practice of coordination and continuity” was thought not to be—again, they looked at nearly 1000 specific actions.

As a palliative care physician, I found the data included on symptom management most interesting. The report showed a figure with 23 symptoms ranked in order of whether items related to them were thought to be “Included” or “Uncertain” to be part of oncologists’ general practice (also remember that there was a third “Not Included” category, to put this data into perspective). Chemotherapy-related toxicity, nausea and vomiting, dyspnea, fatigue—over 90% of the items were thought to be “Included” as part of standard practice. Pain—66% of the items evaluated were deemed part of standard practice, and 33% “Uncertain.” Depression and anxiety—only 27% and 20% of these items were thought to be “Included” as part of primary palliative care activities for oncologists.

So how do we use this data? Again, the report doesn’t show that oncologists aren’t interested in treating depression, or aren’t interested in psychosocial aspects of their patients. But, it does show that there were pieces of the care of depression, and pieces of psychosocial care that might fall outside of what oncologists might be doing in their practices. This tells me that while I, the palliative care specialist, might be able to help control a patient’s nausea or fatigue, this panel notes that the general oncologist might feel that they’ve got those symptoms mostly covered. But instead, as the collaborating consultant, it sounds like extra support with pain, anxiety and depression, and extra psychosocial and spiritual care would be welcome. It also seems that while a physician or APRN might have value being placed in an oncology clinic, we really need to pull in our social workers, psychologists, and chaplain colleagues to care for patients in aspects that oncologists are likely least comfortable performing as part of their standard practice.

Dr. Ross Albert is the chief of the division of palliative medicine at Hartford Hospital, and the medical director for the Hartford HealthCare at Home Hospice teams, in Hartford CT.


Reference:
Bickel KE, McNiff K, Buss MK, Kamal A, Lupu D, Abernethy AP, Broder MS, Shapiro CL, Acheson AK, Malin J, Evans T, Krzyzanowska MK. “Defining High-Quality Palliative Care in Oncology Practice: An American Society of Clinical Oncology/American Academy of Hospice and Palliative Medicine Guidance Statement.” Journal of Oncology Practice. Published online August 16, 2016.

Image Credit: From the article cited above. 

Wednesday, September 7, 2016 by Christian Sinclair ·

Tuesday, September 6, 2016

PCHETA has a date with a subcommittee! Thank your rep!

by Christian Sinclair

Hey all you hard-working palliatricians and hospice clinicians, we have some pretty exciting news for you! This Thursday Sep 8th, the Palliative Care Hospice Education and Training Act (PCHETA - H.R. 3119/S. 2748) is going on a first date with the House of Representatives Subcommittee on Health (who even has their own hashtag #SubHealth).

So what does this mean? This legislative hearing includes PCHETA and 4 other bipartisan bills focused on improving public health that are being considered for further advancement to the full committee level and eventual consideration in the house. If it goes well, we are one step closer to seeing the goals of PCHETA realized.

What is PCHETA again? We have talked about PCHETA here before, you may have seen it on our social media channels, or heard about it from the many organizations that support it (AAHPM, NHPCO, HPNA, CAPC, SWHPN, American Cancer Society, Alzheimer's Association, American Geriatrics Society, and many others.) But we forgive you if you cannot recall what PCHETA will do.

Basically, PCHETA focuses on increasing Education, Awareness and Research on palliative care and hospice with an interprofesisonal theme (support all the disciplines!). With bipartisan support in both the House and the Senate, and strong voices from patient advocacy groups and groups outside hospice and palliative care, we have a good chance to make a difference*. (You can read the full bill here or get the easy summary from AAHPM.)

So what can you do? First, accept my thanks for doing the strong work everyday. Second, recognize that we can't change the world without advocating for our patients, families, and peers outside of our everyday clinical interactions. So lastly , please consider contacting your legislators. If they are on the House Subcommittee of Health, let them know why this matters. If they have already supported PCHETA as a co-sponsor, then thank them and let them know, that you know this House Subcommittee is coming up! AAHPM has an easy way to contact your legislator, so take 5 minutes and make an impact.

Christian Sinclair, MD, FAAHPM is a palliative care doctor and editor of Pallimed. And is still learning about the long slog it takes to see legislation turn into action.

*Although GovTrack gives the prognosis** of being enacted as 7%. We can do better than that!
** Yes they do call it a prognosis. Not being ironic.

Tuesday, September 6, 2016 by Christian Sinclair ·

Monday, September 5, 2016

Do hospice patients reveal the secrets to the universe?

by Lizzy Miles

A couple of years ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying."  Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This article is the sixth in a series of articles where I take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions. In my last article, I wrote about the assumption that family matters will get resolved.

Here is our next assumption: The secrets to the universe will be revealed.

I admit I went into hospice work with the expectation that I would have profound experiences at the bedside with dying patients. How could one not have this expectation when we see articles about famous last words, such as the NPR article about Steve Jobs saying, “Oh wow” just before he died?

Indeed, I have captured some fascinating thoughts from some of my dying patients. One woman who was devotedly Christian told me, “All faiths go through the same door.” Another time I had a patient say, “Love has no distance.” She said that she knew her family couldn’t be present at the bedside, but she still felt love from them and for them. As it turned out, I used that phrase to comfort the audience in my speech at our hospice memorial. These statements are so simple and yet so profound.

I’ve even taken to asking patients, “What are the secrets to the universe?”  My first indication that I might be off base was a 99 year old woman who had no desire to reflect on her life. Over the course of a year I visited her monthly, but the conversation never got too deep. She didn’t want to look at photo albums, did not want to resolve differences with family, and rarely wanted to process life choices. She would, however, talk about shoes. I did ask her the “secrets” question once, and she gave me the stink eye. She said, “There are no secrets.”

Intervention: Recognize that not every patient wants to reflect, impart wisdom, or do a life review.

There are many books on the market about nearing death awareness, most notably Final Gifts. These books perpetuate the notion that dying patients have special insight into their own prognosis. The stories in the book are often about travel metaphors. Here is transcript of an exchange I had with a hospice patient I’ll call Alice.

Alice: I’m trying to get to the stations. There’s two buses. Either one. They don’t tell me anything.
[What do you want to know?]
Alice: How to get on the bus.
[You can]
Alice: That’s what they tell me. [pause] When I picked up the paper I saw your name on there.
[My name? What did it say?]
Alice: It sounded good.
Alice: The door over there is the door to the building.
[Are you going to go?]
Alice: I will later. That will be the last place I go.
[When do I go?]
Alice: I don’t know, I will have to check. [pause] They say go up and wait and someone will get you.
[What’s on the other side of the door?]
Alice: Another door.
[Who helps you through the door?]
Alice: Nobody. If you know the door is there, you go through by yourself.
[Can I visit again?]
Alice: [smiles] If I’m still here in two weeks.

After my visit, I went back to the hospice team and told them that Alice was seeing the door and she would not be around much longer. As it turned out, Alice did live past those two weeks. In fact, she lived another two years. I got so caught up in the mysticism of the moment that I forgot that she had dementia and she very well could have been talking about the bathroom door.

And yet… two years later I had quit social work and was volunteering for a while, and I was asked to sit with her while she was dying. I was with her the moment she died. Coincidence?  I’m not sure. I’m with Mulder, I want to believe.

Intervention: Reflect on how your own belief system plays into your practice.

In my last article, I mentioned Ira Byock’s book, The Four Things that Matter Most.  The content of that book is relevant to this assumption as well, because readers may believe that there are meaningful final thoughts that are conveyed at the bedside. Sadly, I have seen family members who are hoping that the patient will say something, or they themselves will have a transpersonal experience. Sometimes none of this happens and the patient just dies.

Katie Roiphe’s New York Times article, “Dying with Nothing to Say” reiterates this point.

As a society, we share stories about final words and transpersonal experiences, because it seems to soften the blow of the reality of death. But when you have family who hopes for something to happen which doesn’t, it can be heartbreaking.

Intervention: Educate loved ones that meaning-making often comes from within and over time. Encourage activities that aid in processing thoughts such as journaling or art therapy.

As for me, I know to temper my expectations, but I’m still going to ask for the secrets to the universe. Last week I asked a patient who was over 100, and she said, “Everybody has their own way of handling things so my advice might not fit for others.” Her tablemate had heard my question but not her response and asked her, “What IS the secret?” She clasped her hands to her chest and said emphatically, “Love, love love.”

But that’s not really a secret is it?

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

Monday, September 5, 2016 by Lizzy Miles ·

Sunday, September 4, 2016

August 2016 Pallimed Recap

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
Humanities/Media Reviews
Interview/News
Narrative/Opinion
Research/Education
The Profession
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



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

Sunday, September 4, 2016 by Christian Sinclair ·

Wednesday, August 31, 2016

August 2016 Palliative Care Review

by Christian Sinclair


Some August highlights from non-core HPC journals focusing on palliative care and hospice topics. Anyone who would like to explore any article in depth for a future Pallimed post is welcome to contact us.

Nondisclosure by Dr. Abby Rosenberg, published in JAMA, is a wonderful opportunity to examine if we are doing the right thing for a patient. Having reconnected with the mother of a teenage patient who died 6 years ago, the doctor and the mother were able to talk about the struggle to disclose to Sam, the patient, that he was dying. 

Dr. Paul Rousseau offers a great analysis of the faulty-thinking and potential lack of shared decision-making when someone chooses a partial code (i.e. CPR without intubation, or CPR without cardioversion, etc.) Partial codes - When "Less" may not be "More," is a one to bring to your next meeting for discussion.

The rates for tube feeding placement for people in nursing homes with advanced dementia are going down. We know this thanks to research from Dr. Susan Mitchell and colleagues, published in JAMA earlier this month.

Holy cow! It is hard to believe anyone would start a fentanyl patch on an opioid-naive patient, especially an older adult in a nursing home. But 1 in 10 nursing home residents are getting them, sometimes even 50mcg or more! Check out GeriPal for more breakdown.

When looking at overuse of non-beneficial treatments, how do physicians make decisions? Is the decision-making process evidence-based, based on habitual tendency, or patient-centered? If you guessed B, then you might be interested in this study looking at Choosing Wisely recommendations from ASTRO and ASCO, which showed that the physician you see is going to guide the therapy you get. Very similar to the recent hospice study which showed significant variation between physician hospice referral practices.

Have you recently been operated on? Are you concerned about chronic pain and being on opioids after your surgery? Then this study by Dr. Neilesh Soneji and colleagues from JAMA Surgery may provide some relief, since it showed that only 0.4% of older adults (older than 65y) are on chronic opioids 1 year out from surgery, if they were opioid-naive before surgery.

More surgeons talking about palliative care but this time in the setting of malignant bowel obstruction (MBO). Dr. Elizabeth Lilley and her peers look at shared-decision making, disease experience and health care priorities in the setting of MBO. Seems like surgeons really get this palliative care thing...Atul Gawande, Sherwin Nuland, Paul Kalanithi, amiright?

Christian Sinclair, MD, FAAHPM is editor of Pallimed, and a palliative care doctor at the University of Kansas. When he is not tossing out unread journals, you can usually find him playing a board game with his son.

Wednesday, August 31, 2016 by Christian Sinclair ·

Tuesday, August 30, 2016

What happens when it’s you?

by Michael Fratkin

Nobody was prepared when Barbara’s husband died quickly last month. It turns out, he was both covering for her difficulties and caring for her 24 hours a day. Barbara was accompanied throughout life by a profound depression and, for 40 years by a man who was many things. Strong with integrity and a dedication to Barbara, he had a 24/7 obsession with Fox News. No one, especially his family, described him as nice. He pretended she was functioning reasonably well, even after an anoxic brain injury took its toll three years ago. Since his death, Barbara’s two daughters suspended their own lives and traveled to her side. What they discovered was profound confusion, emotional lability, incontinence, and essentially no ability to function independently. In addition, though the husband gave the impression that all the business and affairs would be tied up with a neat ribbon, everything was a mess. With two children of his own and three of hers, the stated plan was simple equity of all material possessions, but the will and structures didn’t reflect that. His children felt screwed, and rightly so. A house full of stuff thousands of miles from the children, an eight year old yappy and tragically non-housebroken “Teacup Matlese” named Itsy, a rat’s nest of bank accounts and bills, and a woman. Barbara has meltdowns with sobbing and immobility on most afternoons, has little insight into her substantial limitations and is now preparing to relocate to an assisted living facility in the town where her only son lives in Northern California.

Of course, Barbara is my mom and I love her. On Saturday, I am flying to Texas to accompany her back to Northern California. We are hoping that grandchildren and people simply treating her nicely will offer a measure of joy and peace. We are prepared for the worst.

Many of us are now facing the tragedy of our aging parents as Palliative Care professionals. Do we really need any further experience with the failings of our healthcare system and the failings of our social structures to provide even the most basic needs for our elders? My mother has Long Term Care insurance that will allow for the “best possible care” whereas statistically, very few in our society do. Many families are spread out all over the map and complicated by the fragmentation resulting from a culture and society that has been changing at lightning speed for decades.

Let’s take a moment together today to look at what it feels like and how we cope when it becomes clear that there isn’t any “us and them.”

T1: Do you have experience with a parent/grandparent/close family member who was no longer able to care for themselves?
T2: What impact do you think the geographic mobility has on the care of our elders?
T3: What type of reform is needed to ensure our elders do not “fall through the cracks” as they lose independence?
T4: What successful solutions or pilots have you seen that can help elders age in place?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 8/31/2015 - 9p ET/ 6p PT
Host: Dr. Michael Fratkin (@MichaelDFratkin) and Torrie Fields (@TorrieKFields)

 and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.

Photo Credit: Michael Fratkin used with permission.

Tuesday, August 30, 2016 by Pallimed Editor ·

Friday, August 26, 2016

Photovoice Roundup: Self Care

We asked hospice and palliative care professionals to answer us via a picture, "What is your self care activity of choice?"

We learned a lot about our colleagues from this exercise. Everyone had unique answers for ways in which they comfort themselves.





Friday, August 26, 2016 by Pallimed Editor ·

Tuesday, August 23, 2016

Building Resilience in Clinicians to Prevent Burnout

by Arif Kamal

On the topic of palliative care clinician wellness, we are starting to recognize that there is some good news to counter all the bad. First, the bad news. If you’re reading this, and you believe that burnout has not touched your professional life, then it is likely that the colleagues sitting to the immediate left and right of you are not so lucky. Recent survey data of over 1300 palliative care clinicians highlight a sobering statistic: almost two-thirds of our colleagues report burnout (Kamal JPSM 2016). This is among the highest rate of all medical disciplines, and significantly higher than the 45% average burnout rate of physicians outside our specialty (Shanafelt JAMA IM 2012). Burnout, explicitly stated, is a leading cause of palliative care clinicians opting to leave the field, second only to usual retirement. Those reading these statistics are likely not surprised; compassionately caring for persons with serious illness often on the worst days of their life can take a toll on our emotional health. A growing appreciation of the downstream effects of unchecked burnout on the ability to deliver timely, high quality palliative care has elevated the issue to nothing short of a crisis for our field.

But there’s also good news. Enter resilience, stage left. Resilience is the “capacity to meet challenges, recover from difficulties, and thrive at work; built from skills, not reflective of traits.” Of that definition, the last part is the most important. The idea that certain people are more capable of handling challenges at work is not new; we all know someone who seems to handle difficulties with grace, and an increasing workload with enthusiasm. When the pager goes off, she skips to the phone. All while I worry about making it home in time to read my four-year old “three books, Daddy, you promised three books” before bed. What makes my colleague different?

There are a few potential explanations for this seemingly-odd behavior by my colleague. One explanation is that of self-selection; clinicians who stick around in palliative care are the ones who can cut it, the burnt out ones got out a long time ago. “Crispiness” creeps up on some, and silently ushers the unlucky ones out of palliative care, or maybe even out of medicine. For the lucky few, a retirement party and adoration for the lengthiness of a career in the trenches awaits. Another explanation is that the upbeat clinician has the right personality: upbeat, optimistic, never fazed. She was born with something I was not, a set of traits missing in my family’s gene pool. Like missing the gene for being tall, an Olympics Gold Medal for basketball is no more in my future than a long, healthy career as a palliative care clinician.

Summatively, these two explanations reflect a “trait-based” approach to resilience; those who’ve got it win, and those who don’t, leave. In truth, the clinician I reference has developed, practice, and refined her own set of resilience skills – this has nothing to do with her personality, genetics, or “makeup”. Like leadership skills and communication skills, resilience skills are not inherited or accidentally found. Diligent, intentional, and regular learning and practicing of resilience skills is the main way for persons to build the capacity to thrive in the midst of challenges.

During our Tweetchat on Wednesday, August 24 at 9PM ET, we will discuss the following topics:

T1: We are asserting that resilience is a skill, and not a trait, is that surprising? What skills have you seen others use to help deter burnout?
T2: How can employers/leaders assist clinicians in building resilience skills?
T3: What roles, if any, should specialty societies (e.g. AAHPM, HPNA, NHPCO) play in building resilience skills within the field?

Arif Kamal MD, MBA, MHS is the Physician Quality and Outcomes Officer at Duke Cancer Institute, a palliative medicine physician and oncologist, and dreads the longwindedness of “Green Eggs and Ham” selected as part of the “three books, Daddy, three books” bedtime routine.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 08/24/2016 - 9p ET/ 6p PT
Host: Dr. Arif Kamal Follow @arifkamalmd on Twitter

 and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here or you can access the transcripts and analytics of #hpm chats through @Symplur.

References:
Kamal, A. H., Bull, J. H., Wolf, S. P., Swetz, K. M., Shanafelt, T. D., Ast, K., Kavalieratos D, Sincalir CT, Abernethy, A. P. (2016). Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S. Journal of Pain and Symptom Management, 51(4), 690–6. http://doi.org/10.1016/j.jpainsymman.2015.10.020

Shanafelt, T. D., Boone, S., Tan, L., Dyrbye, L. N., Sotile, W., Satele, D., reskovich, M. R. (2012). Burnout and satisfaction with work-life balance among US physicians relative to the general US population. Archives of Internal Medicine, 172(18), 1377–85. OPEN ACCESS PDF http://doi.org/10.1001/archinternmed.2012.3199

Image Credit: "Burnt Toast" by Christian Sinclair via Canva - Creative Commons-BY-SA

Tuesday, August 23, 2016 by Pallimed Editor ·

Wednesday, August 17, 2016

Redefining “Death in Dignity”: Sherwin Nuland’s How We Die

by Vivian Lam

We begin with an image of Sherwin Nuland as a bright-eyed third year medical student, cutting open a dead man’s chest and cupping his heart with bare hands.

After several moments of desperation, the man, James McCarty, roars a death rattle that stops Nuland in his tracks. We look upon a vivid scene of carnage and defeat—Nuland is soaked with sweat and blood, sobbing and “demanding that he live, screaming his name into his left ear as though he could hear me, and weeping all the time with the frustration and sorrow of my failure, his” (7). Dave, the intern on duty, comes into the room and holds Nuland “as if [they] were actors in an old World War II movie.” He patiently recounts the clinical and biological events that exonerate him of guilt, for McCarthy’s “death inevitably beyond [his] control,” and he had done “everything [he] could.” But what Nuland remembers most from his gentle ministrations is a statement that unravels over the course of the book: “Shep, now you know what it’s like to be a doctor” (8).

Nuland’s encounter with McCarthy serves as a microcosm of the recurring themes that arise from his systematic analysis of the multifaceted ways we approach death. In this failed act of heroism, we encounter the collateral damage of high-tech medicine’s pyrrhic war against death and disease, and the indifference and inevitable supremacy of nature. But it in his remorse that we are introduced to the power and comfort derived from understanding why a body fails, identifying its assailant, and redefining what it means to have a “death with dignity” and what it means to hope.

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How We Die: Reflections on Life’s Last Chapter, published in 1994, is a critically acclaimed demythologization of process of death. Winner of the National Book Award for Nonfiction, finalist for the Pulitzer Prize, and New York Times Best Seller, How We Die elucidates and renders approachable the “horsemen of death” that haunt our lives: heart failure, aging, Alzheimer’s, stroke, murder, suicide, AIDS, and cancer. Through a seamless integration of narrative with incisive scientific and philosophical analysis, Nuland, a practicing surgeon at Yale originally from the Bronx, draws from history, literature, and his own personal experiences to provide prescient insights on how we can reconcile our relentless scientific conquests with the disappearing “art of medicine,” and to no longer be afraid of ars moriendi—the art of dying.

Following a systematic approach of presenting central and supporting anecdotes that are first explained by revealing the biological underpinnings, then put into context with historical and contemporary practices, How We Die could be likened to a series of grand rounds, electrified with the emotional punch of a particularly inspirational TED Talk. Scientifically, death boils down to a matter of suffocation—“Man is an obligate aerobe,” and so is it that we fall into a permanent expiration as cells and tissues die from oxygen deprivation (118). In the multifarious ways this suffocation can manifest, Nuland transforms our ailments into the “mounted murderers” (264) that the battalions of modern medicine are pitted against—we face the tactical brilliance of AIDS as it patiently “[prepares] for a massive land invasion” (182); the “malevolent” and “immoral” cancer, “juvenile delinquents of cellular society” with “no other purpose than to destroy life” (208). And yet, in spite of the exponential advancements we have made in effective reconnaissance and honed weaponry, pushing the boundaries that nature has set against us, we have not yet been able to gracefully accept defeat. The “laboratory-based doctors” and “clinical warriors,” absorbed by the quest to diagnose, design, and carry out a cure (what Nuland calls “The Riddle), traffic hope to patients who are “less a human being and more a complicated challenge in intensive care” (149) without follow-through. And when failure is imminent, they cut their losses and tend to emotionally and physically disappear, leading often, as Nuland demonstrates from an account about the prolonged dying of his older brother that he himself sanctioned, to tragic consequences. As he reflects on his profession, he summarizes: “The Riddle is the doctor’s lodestone as an applied scientist; it is his albatross as a humane caregiver” (260).

But in the midst of the tragedy of illness and of medical abandonment, Nuland draws attention to the strength of patients and caregivers who have paved their own way towards a “good death.” For, a “good death” is redefined by the act of resolutely standing by the side of a partner lost to the ravages of Alzheimer’s, hosting one final Christmas dinner where cancer is secondary to bonhomie, or forming a “caregiving surround” of a family of friends to mourn another young life taken by AIDS. A “good death” reclaimed by the love and supportive presence that is made possible by the acknowledgement of disease, and the acceptance of death.

Nuland argues that our coveted vision of a “dignified death”—of being surrounded by loved ones in the comfort of one’s own bed, fading painlessly away with enough time to spare for profound parting words—is little more than a dream that makes the reality of dying all the more disappointing. From the lessons of his patients and his own failures, he calls for a personal redefinition of “hope”; for a “resurrection of the family doctor” and the “understanding of a longtime medical friend” (266); for patient empowerment through education, and the clarity that comes with realistic and informed expectations. As Nuland discovered, the key to overcoming The Riddle is to “listen more to the patient, and ask her less to listen to me” (253), to always remember that “[d]eath belongs to the dying and those who love them” (265).

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How We Die is a brilliant pioneer of the ongoing movement for death awareness, compassionate care, and informed decision-making, inspiring and serving as a guide for patients and doctors alike. But most of all, How We Die is a memorial—not only for the deaths of the legions lost to disease, tragedy, and the passing of time, but to the lives they have lived, and the legacies they have planted for others to sow. We die “so that others may live,” our contribution to “the triumph of ongoing life” (267). Whatever lot nature deals us, however filled with tragedy our lives come to be, we are gifted with our own invaluable share of time. For, the “greatest dignity to be found in death is the dignity of the life that preceded it. This is a form of hope we can all achieve, and it is the most abiding of all” (242).

As Nuland concludes: “Ars moriendi is ars viviendi: The art of dying is the art of living…Who has lived in dignity, dies in dignity” (268).

For further engagement:
-“How Electroshock Therapy Changed Me” - Nuland’s TED Talk about his history of mental illness, and overcoming crippling depression; a particular TED conference favorite.
-”The extraordinary power of ordinary people” - Another TED Talk by Nuland, on the idea of hope.
-“Terra Incognita” - Paul Kalinithi’s (author of When Breath Becomes Air) eulogy to Nuland.

Vivian Lam is a student at Stanford University striving to contribute tangibly to the fields of end of life and palliative care, and the medical humanities. She enjoys running long distance and warbling the same songs in the shower all year long.

Disclaimer: Links to How We Die are Amazon Affiliate links. A small percentage of any Amazon purchase from this link goes to supporting Pallimed efforts to share news and information about hospice and palliative care. - Ed.

Wednesday, August 17, 2016 by Pallimed Editor ·

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