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Showing posts with label mcmichael. Show all posts
Showing posts with label mcmichael. Show all posts

Sunday, September 23, 2012

Nominations to the IOM Committee on Transforming End-of-Life Care

The Institute of Medicine is searching for experts in the scientific, technical, and medical professions to be considered for a study committee titled “Committee on Transforming End-of-Life Care.” Nominations are due Monday, September 24, 2012.

The overall objective of the project is to advance policies to improve the care that individuals and families receive at the end of life through alignment with individual values and preferences and to stimulate a national conversation with individuals, families, and communities on improving the way we approach death. Specifically, the IOM committee will: review progress since the landmark 1997 IOM report Approaching Death: Improving Care at the End of Life, assess challenges and opportunities, and examine ways to integrate end-of-life care into a patient- and family-centered, team-based framework of health and community care; make recommendations about changes in public policy, health care financing, and clinical care to better align care with individual values and preferences and promote compassionate, high-quality, and cost-effective care at the end of life; and develop a communication strategy for promoting public information and engagement. 

A complete nomination will include uploading a current CV of the nominee (maximum size 500 kB).



Sunday, September 23, 2012 by Brian McMichael, M.D. ·

Wednesday, September 12, 2012

TEDMED: The 20 Great Challenges of Health and Medicine


I wanted to bring to the attention of the Pallimed community that TEDMED is sponsoring a series of discussions on a new interactive minisite: The 20 Great Challenges of Health and Medicine. The purpose of the series is to elicit multiple perspectives and interaction with thought leaders on some of the large, complex problems in health in medicine that effect us all.

One of the first 6 online discussions active right now is on The Caregiver Crisis

"Coming soon" will be an online discussion on Coming to Grips with End-of-Life Care

It is interesting to note that so far the only TEDMED presentation that has been explicitly about EOL decision-making is this one by Alexandra Drane, the driving force behind Engage With Grace. Perhaps someone out there in Pallimed-land has a big idea to pitch.

Cheers!

Wednesday, September 12, 2012 by Brian McMichael, M.D. ·

Wednesday, February 8, 2012

More Echoes of Temel et al.

This week the American Society of Clinical Oncology (ASCO) published a new Provisional Clinical Opinion (PCO) as an early release article online, The Integration of Palliative Care into Standard Oncology Care. Seven published RCTs formed the basis of the "Panel’s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden."

The Oncology Report published a background piece on this PCO, which highlights the impetus of this paradigmatic shift in comprehensive cancer care as the Temel et al., article in the NEJM in July 2010. Pallimed contributors have posted more or less directly on the reverberations here, here, here, here, here, here and most recently here, where Lyle presaged this development. The background piece also highlights barriers to implementation including resource limitations such as the lack of clinic-based palliative care and community-based non-hospice palliative care, Stark law restrictions, reimbursement structures, more traditional oncology culture, and palliative care workforce limitations. The piece anticipates support and direction from payers as well as cultural changes among up-and-coming practitioners.

One unnerving thing that I noticed among the selected quotes in the background piece was an apparent, persistent confusion between palliative care and hospice, which I perceive as a barrier to effective integration. I face it fairly frequently in my polite chit chat with other residents, fellows and attendings about my training and career trajectory. This issue of confusion and naming has been remarked upon at Pallimed in the past, e.g., here, here and more humorously here.

Wednesday, February 8, 2012 by Brian McMichael, M.D. ·

Wednesday, November 16, 2011

A Better Kind of Care

Paul White, shown here at a chemotherapy session with his daughter Laurie Alexander.
(Essdras M Suarez/Globe Staff)

In a July 24th article, A Better Kind of Care, The Boston Globe journalist Kathleen Burge introduced readers to Paul White, a successful owner of an engineering and manufacturing business, a man with a wife, two adult daughters, five granddaughters, and stage IV renal cell carcinoma. He had beat the odds repeatedly, having survived over seven years since the discovery of metastases. Despite availing himself of surgery, every new advancement in chemotherapy and participating in a clinical trial, his cancer was implacably progressing. Contemplating starting on what might be the last chemotherapeutic agent, he had also started seeing Dr. Vicki Jackson, Director of the Palliative Care Unit at Massachusetts General Hospital.

IMHO, the article did a terrific job of fleshing out the concerns, dilemmas, and ambivalence of patients, family members and healthcare providers in the uncertain, lurching and insidious territory of life-limiting/life-threatening illness and its treatments. It also did a great job of featuring and explaining palliative care, and its role upstream from hospice care. Here are the published letters to the editor on the story.

This morning I read in the Globe that Mr. White died on November 5th.

We have posted here before at the passing of patients with variously documented life-limiting/life-threatening illnesses, e.g., here, here and here. I thought I would respectfully post this retrospective with gratitude to the many patients who allow us to glimpse some of the most difficult situations in hopes of connecting to, and of helping, others.

Wednesday, November 16, 2011 by Brian McMichael, M.D. ·

Monday, August 1, 2011

The Fellowship Quest With No Match, or O Brother, Where Are We?

Eric Widera over at GeriPal posted in April about changes in the National Resident Matching Program (NRMP) timeline for medical subspecialty fellowships, and the implications for Hospice and Palliative Medicine (HPM) and Geriatrics.

I'd like to talk about our Match-less HPM fellowship application process, from one applicant's perspective.
Photography by Ken Goldberg. From “Tele-Twister” CC 2004. Some rights reserved.

So, there I am minding my own business, I've interviewed at five impressive programs, with two more interviews scheduled. Then unexpectedly, I get an offer for a position from a stellar institution (I rather awkwardly ask for time to interview more fully before making a decision, which was granted). This is followed a week later by another offer from a great program. One is closer to my family, but culturally less vibrant, with an academic practice pattern and team culture to my liking; the other is farther from my family, but in a more culturally robust area, with a strong clinical program offering high volume and challenging cases. My wife is a professional musician and music journalist, so the cultural milieu where I train, and may wind up practicing in, is an important factor. Then an interview opportunity comes in from another great program in a great town an hour away from my wife's family.


Photography by Ken Goldberg. From “Tele-Twister” CC 2004. Some rights reserved.

Perhaps one might say, "I should be so lucky." My reaction is actually more like panic. The opportunity costs is high assuredly, but determining which I should choose and which I should forego is excruciatingly difficult. I still have 10 applications out (OK maybe too many applications. But, who knows at the outset how one is going to fare?). All of those programs are very interesting to me, for location, institution and program faculty, etc.

So, I ask for and get extensions of the offers. I interview at the program close to my wife's family. When I meet with the program director, I'm told their decision about my cohort of applicants will likely be made after my other offer extensions are up. I also get what is probably a generic invitation to contact the program if I needed an early decision to clarify matters. So, back to the offering programs to update them and ask for more time, which they graciously grant. I then ask for, but did not get, an early decision, which means I was still in the running. So, I am being pulled now in at least three ways, with irons still in the fire.

Interviewing is expensive, especially on a resident's salary, and doing this all during residency, with long hours while taking care of patients and collateral responsibilities, and having to use vacation time is all very stressful. As this is all going on interview offers continue to trickle in. I begin to turn down interview offers, even canceling interviews I already have scheduled, thinking I am likely to take one of these positions. At the same time, I am anxious about eliminating interviews out here in the Wild, Wild West because something could go wrong and my birds in the bush could fly the coop, and the whole thing could come down like a house of cards leaving me in the cold, and empty-handed.

The last few days start ticking down. Out of the blue, I get a contingent offer from a program that is very strong clinically and highly academic, in a culturally vibrant town, not too terribly far away from my family. They are working on getting approval for another Accreditation Council for Graduate Medical Education (ACGME) slot, versus perhaps another candidate may turn down an offer they have already made. At this point I make criteria for being "drawn and quartered," now being pulled in four different directions. The opportunity costs mount!


Illustrated by Jillian Gilliland © 2009. From “Tell Me A Story” © 2009 Universal Uclick. All rights reserved.

The way it felt, both as it was happening and in retrospect, was something like an uncertain, perilous and epic quest. It reminded me of my favorite epic, The Odyssey. Odysseus was struggling to get home after many long years away, but one problem after another cropped up to thwart him: the whim and malice of gods and goddesses, the threats of monsters, the thrall of enchantments, the lure of comfortable captivities, the sirens' call, tempestuous storms and even more monsters. It is at this point that imagery from the Odyssey wells up: Odysseus caught between the gorging and belching vortex of Charybdis on the one hand and the rapacious heads and voracious mouths of Scylla on the other, with no way out but through.


By luck and craftiness Odysseus barely averts disaster again and again, and by holding to the course, he finally achieves his quest and arrives home, travel-weary, older, perhaps wiser… but also with an unnecessary case of PTSD. To reason that since the hero survives and achieves the quest, the arduous and circuitous course he was made to take is justified is, in my opinion, a rationalization.


In the end, I secured a position and I am very happy with my outcome. I am however very unhappy with the process. Thank goodness for the Electronic Resident Application System (ERAS) where one's application, CV, personal statement, letters of recommendation, are uploaded into the electronic ERAS cloud once, and then are electronically submitted to one's desired programs (except for the programs that don't participate in ERAS and require old-fashioned paper applications, thus duplicating work for interested applicants and their recommenders). Having ERAS in place prevented the process from being even more labor-intensive and chaotic.

The diversity among programs in their respective timelines for application review, interviewing, and how and when to do what about making offers is frankly stunning. My process was cut short by a spoils-to-the-swift ethic. Because of the asynchronous timelines, I had to decline interview offers from programs I was very interested in. Given the inherent power disparity in the roles and the dynamics involved, I did not believe I had the latitude to walk away from offers from great programs in order to "explore my options" further. Perhaps my issue, but I doubt mine alone.

If there wasn't already an existing, simple, validated, large-scale, low-cost system to regulate and standardize behavior and decision-making among applicants and programs then one would be pragmatically stuck with the status quo. Luckily for us the kinks and bugs have already been worked out and a process is readily available for us to plug into. I'm speaking of course of the NRMP, or more simply "the Match."

Having been through an NRMP Match, and now this Matchless Meet Market, I find the latter is wholly unsavory and unsatisfactory. Rather than feeling like I've come through a fair process conducted on an even playing field to arrive at an optimized placement to advance my learning and professional development and to staff the houses of programs with the best they can attract, instead I feel like I just bought a house in today's market; I've closed the best deal I could, but I really would not want to do that over again.

Furthermore, I believe I was extremely lucky; my timelines were generous and fluid. I just think about those souls out there who are waiting for an interview in their preferred program, near their family, but get an acceptance from another program with a one week deadline to accept the offer (not an uncommon demand). Yes, I feel lucky for how it turned out in the end, but I also feel like I've been through the wringer unnecessarily, and I resent that.

My conclusion is that for the sake of learners (and I actually believe in the interests of most programs) HPM needs to align with the leaders in GME and participate in The Match on the same timeline as the other medical specialties. Incidentally, moving the process into applicants' final year of specialty training would bring it in line with the fellowship application process in other specialties, at least with Physical Medicine & Rehabilitation and Emergency Medicine.

If you have a war story, please feel free to add it. I would suggest de-identifying the data for the sake of human subjects protection, if you get my drift.

[Ed. Note: In the vast palliative care social media echo chamber, Eric Widera over at the GeriPal has provided the 2 to a 1-2 post combination on the problems of applicant/learners in the current state-of-the-fellowships. Please be sure to pop on over and check it out. - McMichael

And after you read that, you can see Christian Sinclair's alternate take on the Geripal post. - Sinclair]

Monday, August 1, 2011 by Brian McMichael, M.D. ·

Thursday, June 16, 2011

Routine Palliative Medicine Consults for VAD Destination Therapy


HT: @LVADone on Twitter. I got wind of this article from one of his tweets.

In this month's issue of the Mayo Clinic Proceedings is the first article reporting on a case series with inclusion of palliative medicine (PM) consultations as a routine, integrated part of pre-op or early post-op care for patients receiving ventricular assist device (VAD) as destination therapy (DT). Both Drew and Holly have posted previously on Pallimed about VAD DT.

The Mayo Clinic is a nationally and internationally recognized tertiary and quaternary referral center. As such, beyond the ordinarily sick patients, the Mayo Clinic treats some extremely sick patients, patients who come to be cured, as well as patients who are a mixture of both. The Mayo Clinic recently performed its 100th heart translpant, and they having been implanting VADs as both bridge therapy and as DT. As such, they offer sub-sub-specialty training in Mechanical Circulatory Support and Cardiac Transplantation.


Problematic situations and ethical quandries arise in these environments, given the complexity of the patients, the psycho-social stresses on patients and family members, the array of complications as well the spectrum of outcomes, including "destination nowhere," – a functioning VAD in an otherwise moribund patient. In response, a process of interdisciplinary dialogue at the Mayo Clinic concluded that it would be beneficial to offer PM consultations as a part of standard multidiscipinary care of these patients.

In this consecutive case series, 19 VAD implantations were performed, over a 50-week period. 13 patients (68%) received PM consultations, consisting of an initial intervention of a psychosocial evaluation by a social worker as well as a review of goals of care and advance care plans with PM clinicians, with post-op follow-up. Most PM consultations were proactive and pre-op. The advantage of proactive PM consultations in having already established familiarity and rapport among the patient, family and the PM team was highlighted.

The case series is summarized with patient characteristics, PM consultation status, survival and assessment of end-of-life trajectory. During this period, 5 of these patients died, of which 4 had had PM consultations, 3 had completed a pre-VAD advanced directive. 6 illustrative cases are discussed.

The writers do a nice job of describing their extensive advance care planning process unique to this patient population. They refer to this product as their "preparedness plan," which goes well above and beyond traditional advance directives. The preparedness plan assisted patients and families in thinking about goals and expectations, post-op rehabilitation, psychosocial, spiritual/religious and financial considerations, caregiving concerns, QOL determinants, complications specific to VAD and DT, perioperative morbidity and mortality and ethical issues that may affect clinical DT outcomes. When adverse events occurred, the PM team assisted with preparedness plan implementation, symptom management, and family- and patient-centered support.

Some Thoughts
I noticed that as the series progressed there appeared to be emerging trends of decreasing frequency of PM consultations, more post-op PM consultations, and decreasing frequency of pre-VAD advanced directives (presumably the patients lacking a PM consultation also lacked the more thorough and arguably more useful, personalized preparedness plan). The post-op mortality improved as the series progressed as well. Previous to this endeavor no DT patients at Mayo received proactive PM consultations, and only 14% received any PM consultation whatsoever. This is a small sample and the signal-to-noise ratio is high. Nonetheless the pattern made me wonder if this represents post-conversion, systemic back-sliding/falling-off-the-wagon, although this is expressly not reflected in the discussion.

For discussion sake, I have seen team members and team leadership variously disinclined from parceling out slices of patient care to outsiders. Such teams seem inclined towards jettisoning outside support earlier rather than later in the practice development curve. Sometimes I have seen such jettisoning at the merest blush of the team demonstrating basic competence, at a minimal level of performance, as if going solo were the overriding goal, versus the goal being optimizing outcomes and processes. As has been noted on Pallimed repeatedly, if primary teams can make the necessary time available, and have the multi-disciplinary resources, expertise and communication skills on their team then there's no need for a PM consult. But, I think that such is rare, and complicated care with complicated patients takes organizational specialization and delegation, plus a willingness not to do it all.

Any thoughts or experience from the trenches?

ResearchBlogging.orgSwetz KM, Freeman MR, Abouezzeddine OF, Carter KA, Boilson BA, Ottenberg AL, Park SJ, & Mueller PS (2011). Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy. Mayo Clinic proceedings. Mayo Clinic, 86 (6), 493-500 PMID: 21628614

Thursday, June 16, 2011 by Brian McMichael, M.D. ·

Sunday, April 3, 2011

Inpatient Rehab Improves Functional Status in Asthenic Cancer Patients

The lead research article in the current issue of the American Journal of Physical Medicine and Rehabilitation is Inpatient Rehabilitation Improved Functional Status in Asthenic Patients with Solid and Hematologic Malignancies. It was written by a team from the Department of Palliative Care and Rehabilitation Medicine and the Department of Biostatistics at the University of Texas, MD Anderson Cancer Center. This study sought to compare functional outcomes in asthenic patients with hematologic malignancies with those of asthenic patients with solid tumors after inpatient rehabilitation.

Read more »

Sunday, April 3, 2011 by Brian McMichael, M.D. ·

Monday, January 3, 2011

RCT of Palliative Medicine Consultations on Admission

In the current issue of Archives of Internal Medicine, under the category, "Health Care Reform" is a Research Letter entitled, Hospital-Based Palliative Medicine Consultation: A Randomized Controlled Trial. It is brought to you by the good folks at UCSF. It was a 2-year, randomized, prospective, clinical trial of patients 65 years or older with heart failure, cancer, chronic obstructive pulmonary disease, or cirrhosis, who were able to give informed consent, and who spoke English.

Read more »

Monday, January 3, 2011 by Brian McMichael, M.D. ·

Saturday, November 20, 2010

Prognostic Tool in Pediatric Oncological Hospice



In the December 1st issue of Pediatric Blood and Cancer is an article that presents the validation of a prognostic tool in pediatric hospice care. The study was produced by a team from the Hospital A.C. Camargo, a large cancer center in São Paulo, Brazil. Their overall survival rate in the treatment of pediatric cancers is just over 75%, roughly on par with those in the United States at approximately 80%. At this institution, a nurse-led, multidisciplinary palliative care team was developed in 1999. Patients are referred to it when 3 pediatric oncologists reach a consensus that a particular patient has no chance for a cure.

Read more »

Saturday, November 20, 2010 by Brian McMichael, M.D. ·

Sunday, November 14, 2010

HPM on Wikipedia


I've grumbled umpteen times that Wikipedia ought get a "Hospice and Palliative Medicine" article written. As it stood when HPM, as a subspecialty, was the intended idea, writers would usually cobble together links to the separate "Hospice" and "Palliative Care" articles. Then I suddenly remembered that we are Wikipedia, and such an article wasn't going to write itself. So I clicked the letters in red of an unwritten article, and wrote one.

Since this is a pretty active Web-2.0 community aligned with the "collaborative, publish first, refine on the go" paradigm, I thought I would turn it over to all y'all to grow it from an initial stub into its full-blossomed elaboration.

So sign in and edit as you see fit, and let's see what we come up with. Also go through the various other, related articles and fine tune the links in the web of Wikipedia knowledge.

Enjoy!

Sunday, November 14, 2010 by Brian McMichael, M.D. ·

Wednesday, November 3, 2010

Cartography of EOL Pain


Alex Smith and Eric Widera of GeriPal fame, et al., have just published an article in Annals of Internal Medicine, The Epidemiology of Pain During the Last 2 Years of Life. The L.A. Times article is here. Little is known for certain about the contours of this landscape; so, let's explore.

This was an observational study gleaned from the Health and Retirement Study, a nationally representative survey of community-living adults. The subjects were deceased who, either the subject or proxy, had been interviewed once within the last 24 months of life. The subjects were divided into 24 consecutive cohorts on the basis of the number of months between the interview and death. The prevalence and time-course of clinically significant pain (experienced often and as moderate-to-severe) were described and analyzed with respect to demographic, socioeconomic and clinical factors. These data were modeled and adjusted for the different factors.

Read more »

Wednesday, November 3, 2010 by Brian McMichael, M.D. ·

Sunday, September 26, 2010

Let's Talk about Sex

I thought I would post on what I hope will turn out to be an occasional series on sexuality here on Pallimed. We've covered sexuality some before. A post that leaps to mind is one by Christian in 2007 about the controversy that arose over a case where the staff at the world's first hospice designed specifically for young adults openly deliberated and decided to facilitate a 22-year-old patient's request to have sex before he died.


Read more »

Sunday, September 26, 2010 by Brian McMichael, M.D. ·

Friday, July 30, 2010

Donating Eggs from an Anoxic Brain Injury Patient?

Last week NEJM published an interesting case in the ongoing series: "A Request for Retrieval of Oocytes from a 36-year old Woman with Anoxic Brain Injury." Usually these cases are diagnostic dilemmas. This one focused on an ethical dilemma at end-of-life. It got coverage in the mainstream media as well.

The Case
A 36-year-old woman, in overall good health taking oral contraceptive pills (OCPs), was on a prolonged international flight, and collapsed. A physician on the plane found no pulse. A 2-hour long, in-flight, complicated course of ACLS ensued with compromised ventilation, until the plane made an emergency landing in Boston. The patient presented to the MGH ED approximately 2.5 hours after her collapse, with unstable vital signs and arrhythmia. She was intubated with a Glasgow Coma Scale (GCS) of 9 with some lateralization, eyes roving, not tracking with disconjugate gaze, brain-stem and spinal reflexes intact. Her work up revealed right lower extremity DVT, with multiple bilateral pulmonary emboli and evidence of right-heart strain. Initial CT and MR neuroimaging was unremarkable. The patient was admitted to the ICU.

Read more »

Friday, July 30, 2010 by Brian McMichael, M.D. ·

Wednesday, March 24, 2010

Symptoms, Suffering, Parents and Pediatric Palliative Care in End-Stage Cancer, Part 2


A couple of weeks ago I posted on the Archives of Pediatrics and Adolescent Medicine article “Considerations About Hastening Death Among Parents of Children Who Die of Cancer." That study and the study I’m writing about here are retrospective cross-sectional surveys of parents whose children died of cancer at least one year previously. Joanne Wolfe, MD, MPH of the Dana Farber Cancer Institute, Boston was on both research teams.
This study, "Symptoms and suffering at the end of life in children with cancer: an Australian perspective" was published in the Medical Journal of Australia in mid-January. The abstract is here.
In the study’s introduction, it was pointed out that previous international studies may not apply to the Australian milieu since compared to many other developed countries there are system limitations in access to experimental cancer treatments and fewer pediatric oncologists available, also Australia's population is dispersed over huge physical distances, which leads to the development of local and regional treatment centers.
Here are some data highlights:
  • Offered out-of-hospital palliative care: 82%, 75% opted in. Satisfaction rating of very good or excellent for out-of-hospital palliative care: 74%
  • 47% received cancer-directed therapy in the last month of life, with 33% experiencing significant side effects. The perceived goal of cancer-directed therapy was 33% palliation, 12% extending life, 12% ensuring everything had been done. Children who received cancer-directed therapy during the end-of-life period suffered from a greater number of symptoms than those who did not receive treatment (p = 0.03).
  • 63% had time to plan death location, of these 89% preferred to have the child die at home, and of these all except two died in the planned location; 61% died at home. Of those children who died in-hospital, almost 25% died in an ICU. Life-sustaining treatments were pursued in only 8%.
  • Descriptive statistics were presented about symptoms, suffering, treatment and treatment success. It was notable that there was a significant gap between symptom treatment and treatment success. Despite this, 83% reported the death of their child was somewhat or very peaceful.
In conclusion, the authors noted “relatively high rates of death at home and low rates of heroic medical interventions suggest a realistic approach to care of children with cancer at end of life. However, many Australian children who die of cancer suffer from unresolved symptoms. Greater care should be paid to palliative care for these children.”
Some thoughts
"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." ~ Elizabeth Stone

I think that taken together these two studies highlight the problems of under-treatment and late-treatment of symptoms in children with end-stage cancer, as well as importance of appropriate, anticipatory information for and communication with parents and caregivers. What caught my eye about these studies is that they were conducted and published at all, and upon further consideration, that they made it through the IRB process (having sat on one). I think that illness, suffering and death of children are psychologically white-hot. They touch upon our hopes, fears, guilt and shame, as health care professionals, and even more personally as family members ourselves, and as human beings.

I for one experienced the post-natal death of a sibling when I was seven-year-old; I rotated in the PICU, and routinely worked in a busy, urban children’s hospital emergency department; my young-adult son is training in the Army National Guard at this writing. The death of children, its memory, and the threat of death can loom very large indeed.
One appealing fantasy that may be afoot, which I know I can entertain, is that if we were just having EOL discussions earlier, and better prognoses where being made, and change of goals were initiated sooner, and these hospice -appropriate patients were enrolled in hospice earlier, then these kids and their families would suffer less. Certainly not very parsimonious, these are a lot of complex conditions. Even if we were able to smooth this terrible path some, and see greater and earlier enrollments into hospice, there is still the dying, the dying child and the child dying from cancer.
The expectation that we would be able to attain ideal symptom control if we were just given a fair shot, in a process as chaotic, dynamic and malignant as end-stage, pediatric cancer, is I think a fantasy. Alternatively there is doing one’s best by a patient, attending to the symptoms and the suffering in a context that is congruent and meaningful that is perhaps healing and even protective, especially for surviving parents, siblings, and other caregivers.
The Australian situation is different from other parts of the developed world as noted above. Perhaps an analogy might be drawn to the health care situation in rural and remote portions of the United States, where there are logistical barriers and cultural differences, and so the experience, meaning and memory may be different. That being said, even in the face of a yawning gap between symptom treatment and symptom treatment success, these parents were largely satisfied with the palliative care they received, and recalled the death of their child as being somewhat or very peaceful.
I think that there is a strong place for information, appropriate expectations, empowerment, good will, attention, professionalism and narrative to make a crucial difference in the experience of suffering, dying and grief, even, or especially in the case of children. That imperfect work is ours.
ResearchBlogging.orgHeath JA, Clarke NE, Donath SM, McCarthy M, Anderson VA, & Wolfe J (2010). Symptoms and suffering at the end of life in children with cancer: an Australian perspective. The Medical journal of Australia, 192 (2), 71-5 PMID: 20078405

Wednesday, March 24, 2010 by Brian McMichael, M.D. ·

Tuesday, March 9, 2010

Symptoms, Suffering, Parents and Pediatric Palliative Care in End-Stage Cancer, Part 1




Dying children present some of the most distressing scenarios for families and clinicians alike. In pediatric patients with advanced cancer there are a variety of forces and goals in-play. Two recently published studies look at the palliative care of children with end-stage cancer and the perceptions and concerns of their parents. Both studies are retrospective, cross-sectional surveys of parents whose children died of cancer at least one year previously. Joanne Wolfe, MD, MPH of the Dana Farber Cancer Institute, Boston was on both research teams.
The one that I will cover first is currently pretty hot in the media. The second is an Australian study that I will cover in another post.

"Considerations About Hastening Death Among Parents of Children Who Die of Cancer" was published as this month’s Journal Club article in Archives of Pediatrics and Adolescent Medicine. The abstract is here, with links to full text html, pdf and free PPT teaching slides. There is a link to video of Dr. Wolfe discussing the study on the Dana Farber Institute Press Release webpage.
----------------------------------------------------------------------
This study interviews 141 subjects, with concomitant medical record review.
Data presented included:
Reported Experience with Hastening Death (HD)
The 4 Questions:
"During your child's end-of-life care period, did you or a family member ever consider asking someone on the care team to give him/her or give you or the family member medications to intentionally end his/her life?”
"When your child was receiving end-of-life care, did you or a family member ever discuss intentionally ending his/her life?"
"Did you or a family member ask someone on your child's care team to give him/her medications or to give you or the family member medications to intentionally end his/her life?"
"Did a member of your child's care team give your child medications or did you or a family member give him/her medications to intentionally end his/her life?"
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

19 (13%, about 1 in every 8) said they had thought about asking a doctor to hasten their child's death
13 (9%, almost 1 in every 10) actually discussed it with caregivers
5 (4%) explicitly asked a clinician for medications to end the child’s life
3 (2%) reported that their child’s life was intentionally ended with medication. In all three cases the medication used was morphine.
Current Views About HD:
Retrospective Hypothetical Scenarios
36% (49 of 136, about 1 in every 3) in retrospect, would have considered discussing HD under certain circumstances with a breakdown of scenarios given.
Uncontrollable pain was the most common circumstance to elicit a hypothetical consideration of HD. 15% would have considered HD for non-physical suffering.
Only 2 parents would have considered HD in circumstances not directly related to the child’s experience, (family witnessing suffering or medical costs).
Endorsement of HD in Vignettes
94% endorsed proportionately intensive symptom management for a terminally ill child with uncontrolled excruciating pain, while only 54% did so in the case of coma; these results did not change when adjusting for race and religiousness.
50% (1 in every 2) endorsed HD in at least one vignette. 59% would agree with a physician discussing HD in the case of a child with terminal cancer in pain or coma.
Of the 19 who considered HD during their child’s EOL course 16 (84%) endorsed HD in vignettes.
In general, being white (not Hispanic) and being not very religious were associated with endorsing HD in vignettes.
In the discussion it was noted that these data are similar to those encountered among the U.S. public with regard to HD and adults at EOL. Existing expert recommendations that it is best for clinicians to have self-awareness of their own attitudes toward HD, and then to hold open, non-judgmental discussions with family members are reiterated. The data suggest that if physical suffering is identified, most parents are open to having discussions about options including legal and effective alternatives, e.g., proportionately intensive symptom management and palliative sedation (both of which imply consideration of the principle of double effect). It was noted that given the sensitive nature of the topic and social desirability bias that HD discussions may have been underreported.
Time magazine covers the article here.
Some thoughts

I think this study highlights the systemic and intrinsic problems in caring for pediatric cancer patients, those of late-treatment and under-treatment of distressing symptoms especially at EOL. In the absence of information on palliative care options, parents are likely to consider HD as a desperate exit plan. It is likely that more than 13% of parents actually consider HD at one point or another. Having a discussion, earlier rather than later, about planning for contingencies of extraordinary symptom presentations, including those that might include significant suffering, is likely to impart important and reassuring information, as well as proactively relieve this likely-to-emerge existential distress for caregivers.
I will continue in this vein in the next post in this two-part series.

On a related note, Dr. Robert Macauley, Pediatrician on the Pediatric Advanced Care Team at Vermont Children's Hospital at Fletcher Allen Health Care wrote an Op-Ed piece in the Burlington, VT Free Press, My Turn: Open palliative care to children.
ResearchBlogging.org






Dussel V, Joffe S, Hilden JM, Watterson-Schaeffer J, Weeks JC, & Wolfe J (2010). Considerations about hastening death among parents of children who die of cancer. Archives of pediatrics & adolescent medicine, 164 (3), 231-7 PMID: 20194255

Tuesday, March 9, 2010 by Brian McMichael, M.D. ·

Thursday, February 11, 2010

Tube ‘em & Move ‘em: The Data Set

Greetings. This is my first guest-post on Pallimed; I’m hoping it won’t be my last. I had envisioned a cleverer debut, elucidating my inclination to HPM vis-à-vis my bio, as a non-traditional (read mid-life-crisis-old) entrant to medicine, and my specialty (PMR by way of EM). However, Drew is taking a hiatus and the article I’m posting on now fell into my lap while still printing-press warm. So, thanks to Drew, Christian and to the entire Pallimed Editorial Board for the encouragement and invitation. On to Pallimed…

Drew just posted 'It just changes the complications' covering an ethnographic study that appeared in the Archives of Internal Medicine about the influence of nursing home (NH) culture on rates of tube feeding of patients with advanced dementia. My thoughts upon reading this (and I’ll wager I wasn’t alone) was that the information and the differences noted made sense to me, but it’s tough to make institutional and policy review and implement indicated changes based on ethnography.

So, as if in telepathic response to Pallimed readers, the current issue of JAMA contains an article about just this topic, abounding in hard data. Teno et al. 2010. Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Cognitive Impairment. JAMA. 303(6):544-550. The good people at GeriPal have also posted on this article.

This is a large, retrospective, chart-review covering the 8-year period from 2000 through 2007. It has a Texas-sized data set, N = 280,869 admissions for 163,022 residents of nursing homes with advanced cognitive impairment. The U.S. Nursing Home Minimum Data Set defined the study population. The resultant random sample size represented 20% of all Medicare beneficiaries who were previously non-tube fed NH residents age ≥66, admitted to 2797 out of 5401 U.S. hospitals during the study period.

The rates of endoscopic or surgical insertion of a gastrostomy tube (G-tube) placement during a hospitalization varied from 0 to 38.9 per 100 admissions (mean 6.5, median 5.3).

Encouragingly, the practice showed a decrease over time. The mean rate of feeding tube insertions per 100 admissions was 7.9 in 2000, decreasing to 6.2 in 2007, with the biggest decrease occurring in 2005.

I feared certain ugly truths possibly emerging that perhaps patients’ best interests would be sacrificed for medical student or resident training; or that hospitals with high specialist-to-PCP ratio would nudge patients down an unfortunate path. These fears of mine were not borne out by the data.

Hospital characteristics that did emerge as risk factors for G-tube placement in NH residents with advanced cognitive impairment were in order of decreasing adjusted odds ratios:
  • Greater ICU use in the last 6 months of life
  • Larger size, and
  • For-profit ownership vs government ownership
These differences persisted after controlling for patient characteristics. I think these represent at least unfortunate truths. To me there is a certain Kafkaesque darkness to the notion that admission to a large, for-profit hospital with high ICU use in the last 6 months of life results in significantly higher rates of G-tube placement in NH residents with advanced dementia.

Several nursing home resident characteristics were independently associated with G-tube placement. Black NH residents with severe dementia had about a 2-fold increased likelihood of having a G-tube placed; white residents had the lowest likelihood of G-tube placement.

Patient characteristics that reduced the likelihood of G-tube placement were having written advance directives, DNR orders, and orders to forgo artificial hydration.

Hospice use was weakly or not associated with feeding tube placement. This last factoid was perplexing to me. It led me to consider if this incongruity was a function of the heterogeneity and evolution of HPM practice models and styles over geography and time, e.g., placing venting G-tube placement for anticipated GI obstruction, or ex post facto, late hospice referrals.

Hypotheses anyone?
ResearchBlogging.org
Teno JM, Mitchell SL, Gozalo PL, Dosa D, Hsu A, Intrator O, & Mor V (2010). Hospital characteristics associated with feeding tube placement in nursing home residents with advanced cognitive impairment. JAMA : the journal of the American Medical Association, 303 (6), 544-50 PMID: 20145231

Thursday, February 11, 2010 by Brian McMichael, M.D. ·

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