Mastodon 16_08 ~ Pallimed

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 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 for ease of following. You can also check out the new site dedicated to #hpm chat -

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 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 for ease of following. You can also check out the new site dedicated to #hpm chat -

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

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.

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

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.


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).


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 ·

Tuesday, August 16, 2016

Behind the Scenes: Media Watch by Barry Ashpole

by Barry R. Ashpole

(Being avid fans and readers of Barry Ashpole and Media Watch (sample issue) for years, we wanted to share his story and background with you. - Ed.)

Keeping abreast of current thinking in almost any field of endeavour is a challenge. Health professionals, as an example, are often hard pressed to keep abreast of what is being published or reported – monitoring emerging trends or tracking what or who informs the decision or policy making processes. Generally speaking, a health professional’s scope of practice dictates to a greater or lesser extent what sources of information he or she accesses, for example, the newspapers they read, the journals to which they subscribe or the websites they visit on a regular basis. Unless undertaking a literature search, they may not readily appreciate the extent to which a given issue, subject or topic is receiving attention through one media or another. Complicating the situation is the fragmentation of information and news sources.

Significantly, many issues specific to hospice and palliative care (PC) are universal in nature: in most countries, health care systems and social services face identical or at least similar challenges. What is happening, for example, in North America, Europe or Australia has relevance – either directly or indirectly – no matter in what country a health professional is practicing or their scope of practice. There’s information to be shared and lessons to be learned.

For the most part, it’s the news media – encompassing the Internet – that informs public opinion. It’s of critical importance, therefore, that health professionals are aware of what (or who) is shaping ideas and opinions, formulating policy ...and, to be sensitive to what may or may not inform a patient or family’s perception or point of view, particularly in the context of end-of-life care (EOLC) and the medical decision making process.

My involvement in hospice and PC dates from 1985 and, as a communications consultant, I’ve been involved in or responsible for a broad range of initiatives at the community, regional, provincial and national level in Canada. As part of a college certificate program (beginning some years back), I encouraged my students – nurses, social workers and other health professionals – to bring to class any articles or reports on hospice or PC they happen to come across. The intent was to help students appreciate the topicality of the many EOLC issues addressed during the course, supplementing course readings and resources. Somewhat surprised, few responded. It become apparent that the students rarely paid much attention to the lay press and seem to have fairly limited access to the literature. I concluded, rightly or wrongly, that I was teaching a class not particularly well informed on “current thinking.” In an attempt to address this perception on my part, I began putting together a page of two summarizing the week’s news that I felt relevant and highlighting selected journal articles that crossed my desk.

This is the somewhat modest beginning of Media Watch, which, over the past nine-years, has become international in scope and reach. The weekly report offers an overview of what is being reported on in the lay press and also published in specialist publications in the health, social and allied fields on issues specific to the provision and delivery of EOLC. It has evolved into an advocacy, research and teaching tool. Media Watch continues to be an important resource in the PC courses that I still teach. The weekly report adds currency to course content and, invariably, enhances discussion and encourages interaction, placing many issues, subjects or topics in a context to which students can more readily relate.

My current work focuses primarily on advocacy and policy development in addressing issues specific to those living with a terminal illness – both patients and families (see ‘Communications with the Public, Politicians, and the News Media,’ Oxford Textbook of Palliative Medicine, 5th Edition) In recent years, I’ve applied my experience and knowledge to education, developing and teaching on-line and in-class college courses on different aspects of EOLC, and facilitating issue specific workshops, primarily for frontline care providers.

Media Watch, or a link to the weekly report, is posted on a number of websites that serve the hospice and PC community-at-large, among them the International Palliative Care Resource Centre and the International Association for Hospice and Palliative Care, which highlights Media Watch in its monthly e-newsletter.

Barry R. Ashpole is the editor of Media Watch, a weekly newsletter covering many areas of hospice and palliative care around the world. 

Tuesday, August 16, 2016 by Christian Sinclair ·

Monday, August 15, 2016

Trisomy 13 and 18: When a lethal condition is no longer lethal

by Jenni Linebarger

What is a “lethal condition” really? How does the definition change as medical advances are made? Several times a year, I meet parents who’ve had providers tell them that their baby has a “lethal diagnosis” (or worse, that the diagnosis is “incompatible with life”) when testing detects trisomy 13 or trisomy 18. Such dire prognostication sets the stage for all future interactions with the health care community. For some, it becomes a rallying cry to prove providers wrong, for others it becomes a sealed fate. For all, it declares a level of certainty that we just do not have.

This summer, a paper published in JAMA by Katherine E. Nelson and colleagues sought to provide “more data about survival in general and after interventions” for families who have children diagnosed with trisomy 13 or trisomy 18. They conducted a retrospective, population-based cohort used linked health administrative databases for all children born in Ontario between 1 April 1991 and 31 March 2012 with a diagnostic code for trisomy 13 or trisomy 18. The data from this cohort confirms that survival is not as uncommon as once thought.

They found:
  • Median survival of 12.5 days for children with trisomy 13 , and 9 days for children with trisomy 18
  • The rate of deaths slowed around 3 months of age in children with trisomy 13, and 6 months of age in children with trisomy 18
  • 1-year survival was 19.8 percent for children with trisomy 13, and 12.6 percent for children with trisomy 18
  • 10-year survival was 12.9 percent for children with trisomy 13, and 9.8 percent for children with trisomy 18
  • ~50% of all the children had an organ system with a congenital anomaly (most often cardiac)
The researchers also looked at the surgical interventions patients with trisomy 13 or trisomy 18 underwent during their lives. ENT procedures were most common in children with trisomy 13 and procedures to implant medical devices were the most frequent for those with trisomy 18. Median survival after the first surgery was greater than 1 year for all except the children with trisomy 13 who had ophthalmic surgery and children with trisomy 18 who had cardiac surgery. The authors suggest such high survival following surgery “reflects both careful patient selection and procedural benefit.”

While the researchers hope that the survival data presented can help “guide decision making” there are many factors that influence decision making that this study was not designed to delve into. First, the data did not include all prenatal diagnosis, only those surviving to birth. Second, as the authors point out, survival and quality of life are not one in the same. (Although commentator Dr. John Lantos noted, “The concept of quality of life is too vague and subjective to be helpful as a criterion for deciding about the appropriateness of treatment.”) Additionally, the data does not touch upon the decision-making itself – for instance, they did not report the percentage of deaths following decisions to withhold or withdrawal life-sustaining treatments.

So what do I take away from this study on the survival of children with either trisomy 13 or trisomy 18?
  1. It is time to change the language around the diagnosis of trisomy 13 and trisomy 18. These diagnoses are not universally “lethal” (since greater than 10% survive greater than 10 years) and all surgical interventions are not futile.
  2. Discussing prognosis and survival is still tough and filled with uncertainty. Which babies with trisomy 13 or trisomy 18 will die after a few days and which will live a decade? We still lack useful predictors of long-term survival when facing an individual family in a prenatal meeting.
I also reached out to lead author, and colleague, Dr. Kate Nelson. She agreed with the core take home message, and stated “While the majority of children die within the first few weeks of life, the children who survive can live a decade or more. Since there are few markers associated with long-term survival besides mosaicism, prognostication is difficult. Therefore, care must be individualized, balancing the risks and benefits based on specific clinical situations and families' goals and preferences.” She also noted that readers may link surgical intervention to longer survival, and shared the following: “Children who received surgeries had to live long enough and be healthy enough to undergo procedures, so patient selection likely played a major role in the high post-operative survival rate. More work is needed to understand how surgeries impact survival among children with trisomy 13 and 18.” You can link to the press release from her institution here.

Nelson KE, Rosella, LC, Mahant S, Guttmann A. Survival and Surgical Interventions for Children with Trisomy 13 and 18. JAMA 2016; 316(4):420-429.

Jenni Linebarger, MD, MPH, FAAP is a pediatric palliative care physician at Children's Mercy Hospital in Kansas City, MO.

Photo Credit: Trisomy 13 via Wikimedia Commons

Monday, August 15, 2016 by Jenni Linebarger ·

Saturday, August 13, 2016

Worse than death?...Dependence

by Ross Albert

Every so often, you come upon a study that validates your clinical practice and approach. This was my feeling when I read the research letter “States Worse Than Death Among Hospitalized Patients With Serious Illness.” This study out of Philadelphia surveyed 180 hospitalized patients with serious illness on their views of various health states, and how severe or unacceptable they considered them. What was fascinating was that the scale used was based on death as the benchmark on their Likert scale—“worse than death, neither better nor worse than death, a little better than death, somewhat better than death, or much better than death.”

The study revealed that in this group of patients with advanced cancers, heart failure, and COPD, health states with significant dependence on machines and on care from other people were frequently deemed “Worse than death.” Greater than 60% of respondents rated bowel and bladder incontinence, bedbound state, and ventilator dependence equal to, or worse than death. For comparison, their findings showed that wheelchair bound state, constant moderate pain, and being home bound were deemed equal to, or worse than death less than 15% of the time.

How can we incorporate this study into our practice? The study and author discussion remind us that discussing goals of care in the context of simply being alive or not is insufficient. When providers continue treatments that at best would lead to a state of living that patients and families would find worse than dying, they are not practicing person-centered care. As any card-carrying palliative care provider would note, goals of care discussions must continue to focus on patient’s values and preferences, hopes and worries. This study helps to validate our approach, and continues to build the literature base in our increasingly evidence-based field.

Rubin EB, Buehler AE, Halpern, SD. States Worse Than Death Among Hospitalized Patients With Serious Illness. JAMA Internal Medicine. Published online August 1, 2016.

Dr 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.

Photo Credit: "handle with care fragile do not drop" by Jenny Johnson via Flickr CC-AT-NC

Saturday, August 13, 2016 by Pallimed Editor ·

Wednesday, August 10, 2016

FOUR Score: Coma scales and prognosis in the ICU

by Drew Rosielle

In neuro-critical care, prediction of outcomes is often tricky because of the wide variability in the ability of the brain to recover and the usual long periods needed before seeing what is the limit of recovery. Most people are familiar with the Glasgow Coma Scale, but back in 2009 Mayo Clinic Proceedings published a study of the FOUR score), which presents some prognostic data for ICU patients. FOUR = 'Full Outline of UnResponsiveness.' (It is also written as 4S. - Ed.)

This was a single institution study (Mayo Rochester) primarily designed to investigate whether the FOUR score is a reliable coma scale when applied in ICUs by non-neuroscience types (it has been studied before in neuro ICUs - this study involved non-neuroscience trained nurses, consulting docs, fellows, and intensivists in several ICUs at Mayo). Part of the context for the score is that the Glasgow Coma Scale, the most commonly used coma scale, measures verbal responsiveness - something which is difficult to do on intubated patients. The 4S measures eye response, motor response, brainstem reflexes, and respiratory pattern and assigns 0-4 ratings to each category (see graphic below). All ICU patients (not all intubated) over a 1 year time frame who had 'abnormal consciousness' and who weren't receiving pharmacologic sedation or paralysis were included for the study. Basically different ICU team members were assigned to do 4S evaluations on these patients, and interrater reliability, etc. was measured.

100 patients were evaluated - 45% intubated - with a broad range of illnesses (at least 40% had some primary CNS pathology such as strokes, 'craniotomy,' etc.). Despite the fact that they noted an inclusion criteria of 'abnormal consciousness,' about a 3rd of the patients were described as 'alert': basically all the non-alert patients either had a primary CNS pathology or anoxic or metabolic encephalopathy (as expected; those patients without those issues would be expected to either be alert or pharmacologically sedated). 33% of the patients died - all of them either by neurologic criteria or after life-prolonging treatments were withdrawn due to poor prognosis.

Basically, the 4S looked good from an interreliability, etc. standpoint, and compared favorably with the GCS. As expected, lower (worse) summative 4S scores were associated with worse outcomes including in-hospital death (e.g. every 1 point decrease in the 4S was associated with a 15% improvement in the odds of in-hospital survival). (Note that is odds not rates - most of the outcomes are presented as odds ratios and not actual event-rates.) The only rates presented are for those 9 patients with the lowest 4S scores (presumably zero): 89% died in-hospital, and one assumes that 6 of these were the ones declared dead by neurologic criteria. Notably, the in-hospital mortality for those with the lowest GCS score (3) was 71%, suggesting perhaps the 4S (as it measures more characteristics than the GCS) can more precisely characterize the very sickest.

That said, from a clinical standpoint one isn't particularly helped by new data that a patient with no signs of consciousness, withdrawal to pain, brainstem reflexes, or spontaneous respirations, without the help of sedating drugs (ie a 4S of 0), is highly likely to die. We knew that already, and of course this paper wasn't intended to really demonstrate anything other than the 4S is a reliable way to measure/stratify degrees of unresponsiveness/coma. It is a reminder to me as a reader of this research how my interests in what data I want presented (in this case gross in-hospital mortality rates for each 4S rank) as I naively hope for answers/clinically-relevant information is not what others find important, even though they have the data. The 4S seems to be a straight-forward and easy to measure coma scale, and perhaps we'll be seeing more of it, including frank outcome data.

Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. For more Pallimed posts by Drew click here. 

Iyer VN, Mandrekar JN, Danielson RD, Zubkov AY, Elmer JL, Wijdicks EFM. Validity of the FOUR score coma scale in the medical intensive care unit. Mayo Clin Proc. 2009;84(8):694-701. doi:10.1016/S0025-6196(11)60519-3. Open Access PDF

Wednesday, August 10, 2016 by Drew Rosielle MD ·

Monday, August 1, 2016

Palliative Chemotherapy: An Oxymoron

By Rebecca Gagne Henderson

I was inspired to write this after reading the series of posts on Pallimed titled “Against Euphemisms” by Drew Rosielle. At its very best, the term “Palliative Chemotherapy” is an oxymoron. At its worst, it is a treatment that robs the patient and family of quality of life and valuable time may have been spent doing the things that are important to them.

As a palliative consultant on a campus which does not house a cancer center my referrals typically come from hospitalist attending physicians rather than oncologists. I cannot begin to tell you the number of conversations I have had through the years with patients who had incurable cancer who thought their chemotherapy was for curative purposes. Rather than calling the cancer incurable or terminal the oncologist had told them their cancer was “treatable.”  Ah, yet another euphemism.

Let me tell of a patient who resembles many of my patients. I once had a stage IV cancer patient with carcinomatosis and temporal wasting with severe symptoms of anxiety and pain who had made the decision to go to a hospice by the ocean to watch the ships go by during her last days to weeks. An oncologist came in to consult and explained to the patient and me that with “palliative chemotherapy” she may live as long as two years. This patient opted for chemotherapy and died three weeks later writhing in pain without ever leaving the hospital and without the benefit of specialty hospice care. When we left the room after the initial consultation, as the cheeky APRN that I am, I told the oncologist there was no such thing as “palliative chemotherapy.” The oncologist harrumphed and assured me that there was such a thing. I asked about the side effects of the chemotherapy she was proposing.  He told me the common side effects were nausea, fatigue and hair loss. I explained that we don’t typically consider these palliative outcomes.

In the last few years I have witnessed an upsurge in the term “palliative chemotherapy.” I have even heard an oncologist use the term “palliative mastectomy” to describe a mastectomy for a draining fungating breast tumor that could have been managed with good wound care. Just imagine the pain, expense, suffering and disfigurement this intervention caused this woman, especially when three weeks later a similar fungating wound would appear on her breast-less chest wall. This is not palliative care.

This causes me to reflect on what the word “palliative” represents--what is the focus of our specialty of palliative care?  I will not bore you with my palliative philosophy as I know that those of you who are reading this understand it deeply.  I will say that I did do a literature review looking for articles with the term “palliative chemotherapy” in their abstracts or titles. The earliest articles I found were from the 1950’s (Morel, 1950, Morel, 1952, Josserand, 1953). I would have loved to have read them, but there were no abstracts available and I suspect they were in French. As early as the 1980’s there were rumblings of the side effects and decreased quality of life when “palliative chemotherapy” was initiated, but this was not the focus of those studies (Morton, 1984, Presant, 1984, Queisser, 1984). The focus was on remissions and survival times. There is very little and early work being published regarding the harm caused by “palliative chemotherapy” (Priggerson, 2015, Mack, 2015).

I take umbrage at the usurping of the word “palliative.” To my oncologist colleagues, I ask that you go back to saying “treatable.” or preferably “incurable.” Of course, the knee jerk response to this may be “but we don’t want to take away hope.” As providers, our job is not to provide hope for those who we cannot cure, but rather to help them reframe hope and learn what is important to our patients as they prepare to leave this sweet, yet mortal coil.

I do wish our patient had the opportunity to spend her last days on the Long Island Sound watching the sailboats go by with her loved ones as she said she wanted. She didn’t even have the time to lose her hair.

JOSSERAND, A. A. 1953. [Pathogenesis of Pierre Marie's pulmonary hypertrophic osteoarthropathy from the evolution of two extra-pulmonary epitheliomas treated with palliative chemotherapy]. Lyon médical : Gazette médicale et Journal de médecine réunis, 189, 30-32.
MACK, J. W. J. 2015. Patient beliefs that chemotherapy may be curative and care received at the end of life among patients with metastatic lung and colorectal cancer. Cancer, 121, 1891-1897.
MOREL, A. A. 1950. [Perfection of a method of palliative chemotherapy of certain epithelial cancers]. Lyon médical : Gazette médicale et Journal de médecine réunis, 183, 3-6.
MOREL, A. A. 1952. [Anti-edema therapy associated with cellulicidal palliative chemotherapy of epithelial cancers]. La Presse médicale, 60, 490-492.
MORTON, R. P. R. 1984. Cytotoxic chemotherapy for patients with terminal squamous carcinoma--does it influence survival? Clinical otolaryngology and allied sciences, 9, 175-180.
PRESANT, C. A. C. 1984. Prospective randomized reappraisal of 5-fluorouracil in metastatic colorectal carcinoma. A comparative trial with 6-thioguanine. Cancer, 53, 2610-2614.
PRIGGERSON, H. G. 2015. Chemotherapy Use, Performance Status, and Quality of Life at the End of Life [Online]. Available: [Accessed 6 1].
QUEISSER, W. W. 1984. Chemotherapy for the treatment of cancer pain. Recent results in cancer research, 89, 171-177.

Rebecca Gagne Henderson is a palliative APRN in CT.  All work and no play makes Rebecca a very dull girl. When not at work Rebecca is occupied with her PhD work. Perhaps she will finish by retirement age which is quickly approaching.

photos via
woman Zack Minor
birds WestBoundary Photography chris gill
sailboat by Andreas Rønningen

Monday, August 1, 2016 by Pallimed Editor ·

Pallimed | Blogger Template adapted from Mash2 by Bloggermint