Monday, April 25, 2016

Palliative Care and Hospice Education and Training Act (PCHETA)

Do you think palliative care is important for patients and families?
Do you think palliative care is essential for the US health system?
Then isn't it time that you acted politically to advance palliative care?

Well, this Wednesday April 27th you can join the American Academy of Hospice and Palliative Medicine (AAHPM) and other supporters of palliative care in a virtual lobbying effort to raise awareness in the US Congress about the Palliative Care and Hospice Education and Training Act (PCHETA.)  PCHETA (H.R. 3119 / S. 2748) is a bill developed by AAHPM which would expand opportunities for interdisciplinary education and training in palliative care, implement an awareness campaign to inform patients and health care providers about the benefits of palliative care and hospice, and direct funding toward palliative care research to strengthen clinical practice and health care delivery. (Access a bill summary).

The bill is supported by over 35 organizations including Geripal and AAHPM's good friends at AGS, HPNA, SWHPN, NHPCO, CAPC and many other important health care organizations like the American Cancer Society's Cancer Action Network, the Alzheimers Association, and the American Heart Association/American Stroke Association and so many others.

Thomas Jefferson once wrote that "We in America do not have government by the majority. We have government by the majority who participate."  Well, it is your turn to participate.  Tell your Congressional Representative and Senators why they should support PCHETA.  Don't get discouraged that this will take time to pass.  Momentum is building.  Your voice matters.  Wouldn't it be great if Congressional staffers when asked what the top issue constituents were calling about this week could answer PCHETA!  Make it happen.

Promote PCHETA by e-mailing your elected representatives using AAHPM's Legislative Action Center and posting on Facebook and Twitter. 

The Academy's Virtual Lobby Day Participant Guide will help you understand the bill and look up your members of Congress and their social media contact information. It also offers e-mail talking points and sample social media posts, making it quick and easy to request your lawmakers' support.

Please share these details with colleagues and other hospice and palliative care stakeholders, and encourage them to participate in the #PCHETA Virtual Lobby Day!

Need more information or have questions? Email

by: Paul Tatum (@doctatum)
Read more »

Tuesday, April 19, 2016

When older adults enroll in hospice, symptoms improve

By Alex Smith, @AlexSmithMD

Hospice has taken some tough blows in the last few years. Funding cuts. A reporter at the Washington Post seemingly on a mission to discredit hospice (Washington Post has recently balanced this with some nice reporting, such as this story by Brigham primary care resident Ravi Parikh).

So outside of the headlines and within academia, it’s a relief to see the science falling squarely in favor of hospice in a new study from a well-respected group.

This study, by Shayan Cheraghlo, uses data from the Precipitating Events Project, or PEP study out of Yale, run by Tom Gill. For those of you not familiar with this study, you should be, whether you’re in geriatrics or palliative care. They enrolled 754 community-dwelling non-disabled adults age 70+ and followed them with monthly interviews until death. Enrollment ended in 1999, and only about 100 or so participants are still alive. That is a treasure trove of data about people’s function and symptoms near the end of life. It’s led to several ground breaking papers, including:

  • Disability trajectories in the last year of life. This study found that those with accelerating and catastrophic disability near the end of life were as likely to have organ failure as cancer. 
  • In addition to pain, a wide range of symptoms restrict older adults usual daily activities near the end of life, and increase during the last 5 months of life (first author Sarwat Chaudhry is an awesome physician-researcher). 
  • Breathlessness or dyspnea sufficient to restrict daily activity was present in over half of older adults at some point during the last year of life.

For the present study, published online ahead of print in the American Journal of Medicine, Cheraghlo and colleagues mapped the monthly occurrence of symptoms before and after enrollment in hospice among the 241 PEP participants that enrolled in hospice before death.

This is really where a picture is worth a thousand words. Well, ok, are two pictures worth 500 words each? The top picture shows the prevalence of any symptom that restricts daily activity over time in months, with the dotted line being hospice. The bottom picture shows the average number of symptoms over time.

As you can see, either way you slice the data, restricting symptoms increase sharply in the months before hospice, then decrease after hospice enrollment.

What are these symptoms? Surprisingly it’s not the usual suspects of pain, dyspnea, and constipation, the sort of big three things I would have guessed off the top of my head. The most common symptoms to peak and fall were: fatigue, depression, anxiety, and arm/leg weakness. The authors smarty divided symptoms into how amenable they were to treatment in hospice. It makes the most sense that hospice helped decrease fatigue, depression, and anxiety; explaining reductions in arm/leg weakness by hospice intervention is harder, but not impossible.

Sadly, the mean time from hospice admission to death was only 15 days in this study, mirroring national trends.

How much better might things have been for these older adults had hospice been started earlier? Could that spike in symptoms have been further blunted, or eliminated altogether?
Read more »

Thursday, April 7, 2016

Announcing ePrognosis: Communication - using video to teach prognosis communication

by: Alex Smith, @AlexSmithMD

We're thrilled to announce that our other major project (other than GeriPal, that is) has undergone a radical transformation.  ePrognosis 2.0 is here!

The new site features an easier to use modern interface based on our cancer screening website, now incorporated throughout.

The major new innovation is a whole new section, ePrognosis: Communication.  This section features teaching videos with expert communicators: Sei Lee, Mara Schonberg, and Eric Widera.  The major focus are discussions around prognosis, as viewed through 3 common clinical scenarios: cancer screening, setting diabetes targets, and goals of care/code status for people with a short prognosis.  We have detailed take home teaching points and words to use for key skills, such as how to explain lag time to benefit, addressing uncertainty, and discussing tradeoffs.

Why did we add the ePrognosis: Communication section?  We've heard time and time again from practicing clinicians that they love ePrognosis as a tool.  But the rubber meets the rode in that clinic room and at the bedside - and most practicing clinicians don't know how to talk to patients about prognosis.

Now these videos are not meant to be the be all and end all of how to have prognosis discussions. Is there really such a thing as a perfect communication video?  I doubt it. We wanted to keep the videos short and digestible.  The acting will cause chuckles at times (hey, we were on a budget!)

The main thing to take away from these videos is a discussion.  We've used them to get our trainees talking about how they might do things similarly or differently, to practice, and to out these skills themselves.

Please try out the new site.  Tell us what you think in the comments.  Spread the word!

We are very grateful to the John A Hartford Foundation and the American Federation for Aging Research for their support for the ePrognosis Communication section.

Project leaders for ePrognosis Communication: Alex Smith, Eric Widera, Mara Schoenberg, Sei Lee, Nancy Schoenborn

Read more »

Wednesday, April 6, 2016

Is Prevention Possible? Antibiotic Prophylaxis for Recurrent Lower Extremity Cellulitis

As a geriatrician it is not uncommon to have patients present in clinic with signs of infection like cellulitis, an infection of the skin. My patient, who I will call Mr. Sa, is a 79 year old man with a history of hypertension, high cholesterol, and COPD who struggled with recurrent cellulitis of his right lower leg. Despite two prior clinic visits and completed courses of antibiotics, the infection would heal but return several months later.

Clinical Question
In patients with recurrent lower extremity cellulitis, do prophylactic antibiotics, compared to no treatment, reduce the recurrence rate of lower extremity cellulitis?

Best Available Evidence
A search of the literature found a systemic review and meta-analysis of antibiotic prophylaxis for preventing recurrent cellulitis1. The systemic review used the Cochrane Collaboration tool for assessing the risk of bias and the meta-analysis was used to calculate a weighted treatment effect across trials. Five studies met the inclusion criteria resulting in a total of 535 participants with 260 participants taking antibiotics and 275 participants on placebo or not taking any antibiotics. The average age of participants in the five studies ranged from 45 to 67.5 years. A majority of the participants (397) were from the PATCH 1 and 2 studies located in the United Kingdom with a follow up time of 36 months. Statistical methods calculated included risk ratio, Chi2, and I2 tests.

Analysis revealed that prophylactic antibiotics were beneficial for preventing recurrent cellulitis (RR 0.46, 95% CI 0.26-0.79) with a number needed to treat (NNT) of 5 patients. This means that 5 patients would need to receive the prophylactic antibiotics in order to benefit 1 patient (in preventing recurrent cellulitis).

It should be noted that two of the studies (PATCH 1 and 2) were found to be high quality whereas three of the studies were of low or unclear quality with respect to randomization, allocation concealment, blinding, incomplete outcome data, and selective reporting. Overall limitations include a small number of studies performed in the United Kingdom, a heterogeneous study population among subjects, optimal duration of treatment was non-specified, and finally specific antibiotic medication choice (erythromycin or penicillin) varied across the studies. The most commonly reported adverse events with prescribing prophylactic antibiotics were nausea, abdominal pain, and diarrhea. These limitations hinder the generalizability of the study results, especially with varying antibiotic resistances profiles dependent on location.

The review supports the positive impact of antibiotics for prophylaxis against recurrent cellulitis in the United Kingdom. However, there needs to be more randomized controlled trials set in the United States to determine the applicability, specific antibiotic choice, and optimal duration of treatment.

Back to our Patient
For Mr. Sa, prophylactic antibiotics were not prescribed for cellulitis prevention given his allergy to Penicillin antibiotics. However, for future patients who struggle with recurrent cellulitis, the low NNT and low risk of side effects makes prescribing prophylactic antibiotic a treatment to consider.

1. Oh, C.C., Ko, H.C.H, et al. (2014). Antibiotic prophylaxis for preventing recurrent cellulitis: A systemic review and meta-analysis. Journal of Infection, 69, 26-34.

By: Megan E. Rau, MD, MPH
Megan is currently a first year fellow in Geriatrics and Palliative Care at Mount Sinai Hospital in New York City.

This post is part of the #GeriCases series, in which we discuss a clinical case in geriatrics and palliative medicine and the attempt to provide patient-centered care with the use of best available evidence.

Ravishankar Ramaswamy, MD
Section Editor, #GeriCases
Read more »

Friday, April 1, 2016

Martin Shkreli (aka PalliBro) buys Palliative Care

by: Eric Widera (@ewidera) and Alex Smith (@AlexSmithMD)

In other merger and acquisition news today, palliative care was bought today by former hedge fund manager and current pharmaceutical executive Martin Shkreli (previously known as PharmaBro, now penned PalliBro).

Apparently Mr. Shkreli got the idea for the acquisition from Dr. Atul Gawande.  In his AAHPM/HPNA annual assembly plenary, Dr. Gawande noted that, "Palliative care has amazing outcomes.  If palliative care were a drug owned by the pharmaceutical industry, they would be mass marketing it and making billions."

Sources close to Shkreli state that he carefully pondered how much it could raise the price of this decades old intervention before buying it today. Overnight, the price per dose of palliative care increased by 525 percent, and there are further plans to increase the dose to what the market can bear.

Mr. Shkreli practically gloated about the potential profits in an email he sent out this morning:

“So 5,000 paying bottles of palliative care at the new price is $375,000,000 — almost all of it is profit and I think we will get three years of that or more. This should be a very handsome investment for all of us. Let’s all cross our fingers that the estimates are accurate.”

The pharmaceutical company behind Shkreli’ acquisition released a press statement to reply to potentional concerns of price gauging, stating “we set the drug price to balance patient access to our existing drugs with investment in research and value generation for our shareholders.”
Read more »

GeriPal acquired by Pallimed

by: Alex Smith, @AlexSmithMD, and Eric Widera, @EWidera

We know this will come as a surprise to many of our readers.  We want to make sure that we are clear on the reasons why we at GeriPal have agreed to be bought out by Pallimed:
  1. Pallimed and GeriPal will be better combined than separate.  Think of this dream team lineup of bloggers, all on the court at the same time: Widera, Sinclair, Roseille, Smith, Covinsky.
  2. By being bought out, we can eliminate redundant posts.  Remember when GeriPal and Pallimed both posted about the Temel Study in NEJM showing that palliative care improves quality of life and might prolong life?  Awkward.  We can eliminate this redundancy.  You the readers win by not having to read two posts.
  3. The market is becoming increasingly competitive.  With major new geriatrics and palliative care focused blogs appearing almost daily, it was becoming increasingly hard to compete for scarce readers.
  4. They offered us a lot of money.  "As President of AAHPM, having access to the AAHPM member dues to leverage this purchase really allowed us to make this happen," said Pallimed editor and current AAHPM  President Christian Sinclair.
  5. We've always wanted a green logo.   
  6. Pallimed realized that they couldn't compete in the bigger markets, such as San Francisco.  "It really hit home when the Royals lost to the Giants in the World Series," said Sinclair. "We weren't going to make it as a small market franchise.  We needed to acquire GeriPal to be be able to compete".
We know that there will likely be some changes in store for GeriPal.  We fully expect that some of our contributors will be let go to produce a more efficient blog.

In case we are fired in this consolidation, we want to take this time to thank our readers for their loyalty over the years.  

It's been a great run.

Alex Smith and Eric Widera

Same license plate, nicer car...  Thanks Pallimed!

Read more »

Monday, March 21, 2016

Respecting Choices or penalizing them: do DNR orders affect quality ratings?

by: Lena Makaroun, @LenaKMakaroun

Since 2010, the Center for Medicaid and Medicare Services (CMS) has been reporting hospital quality measures for a number of common medical conditions. Intended to provide health care consumers (patients and their families) with information that may guide where they seek care, these measures have undergone multiple iterations in attempts to inch closer and closer to measuring true “quality”. Mortality, a measure as inherently basic as it is complex, has remained a core measure throughout the past decade, and is showing no signs of retreat. With both US hospitals and the patient populations they serve being hugely diverse, efforts to identify factors contributing to mortality statistics independent of the medical care delivered are important and ongoing. In a recent article in JAMA Internal Medicine this past January, Walkey et al. ask a probing question – are hospitals being penalized on mortality quality measures for valuing patient preferences for those who have do-not-resuscitate (DNR) orders? In other words, are hospitals with higher proportions of patients with DNR orders doing worse on mortality quality measures? And if so, should they be?

The authors collected data for one year from 303 California hospitals caring for a total of 90,644 cases of pneumonia (a common disease for which quality measures are collected and reported by CMS). They gathered information on rates of early DNR orders (within 24 hours of hospitalization), mortality rates and co-morbidities among others. When the researchers looked at the association with mortality, they found that while it may have originally looked like a lower percentage of patients being admitted to the lower-DNR rate hospitals were dying, when adjusted for DNR status, this pattern reversed. When separated into patients who had DNR orders and those that did not, patients in both groups admitted to lower-DNR rate hospitals were more likely to die than patients from both groups who were admitted to higher-DNR rate hospitals.

If it seems confusing, that’s because it is. Numbers can be deceiving, and this may in fact be one of the most important take away points from this study. When numbers are being presented to the public to reflect a truth about the “product” they are consuming, the responsibility is on us to make sure those numbers in fact reflect at least some version of the truth. So what is the truth behind these numbers? In short, it’s too soon to say. Another way of presenting the data is that 84% of the patients who died at the lowest DNR rate hospitals were not themselves DNR, compared to only 44% of those dying at the highest DNR rate hospitals. The authors did not find significant differences between the pneumonia related care that patients received or how sick patients were between the two quartiles. If we are to make the value judgment, as we often do in the geriatrics/palliative world of medicine, that dying in the hospital without a DNR order is worse than dying with one, then the high DNR rate quartile hospitals may be being penalized for higher mortality rates while in fact delivering good quality, patient- centered care.

This, however, may be a dangerous conclusion to draw at this point. The descriptive results of this study paint another layer of the picture. When compared to the high DNR rate quartile hospitals, the lowest quartile hospitals served a poorer, more diverse (49% non-white v 22% non-white for the highest quartile) and higher Medicaid insured population. So perhaps the discrepancy we are seeing in rates of DNR status in fact reflect the distinct preferences of a specific patient population based on cultural and socioeconomic factors, rather than the processes of the health systems and hospitals caring for them. While the authors conclude that we should consider adjusting for DNR rates when measuring hospital mortality as a quality measure, there may be danger in this in inadvertently penalizing hospitals that care for poorer, more diverse patient populations. It seems that what we really should be aiming for is incentivizing the process – actually having good, meaningful goals of care discussions, documenting them and then carrying out care that is in line with patient preferences. As our definition of “quality” continues to evolve, we must strive for a definition that involves understanding and respecting patients’ values and preferences.
Read more »

Monday, March 14, 2016

Top 25 Studies in Hospice and Palliative Care (#HPMtop25)

by: Kara Bishoff (@kara_bischoff )

Back in 2015 we wrote a post asking for input on what articles should belong on a list of the top 25 articles in hospice and palliative care.   We decided to focus on hospice palliative care studies and trials - as opposed to review articles, consensus statements and opinion pieces.

Here’s what we came up with. It was hard to pick just 25! We highly prioritized clinical utility and tried to achieve diversity & balance. Many others are worthy of inclusion. Take a look and let us know if you have suggested changes for next year.

Module 1: Symptom Management
  1. Randomized, Double-Blind, Placebo-Controlled Trial of Oral Docusate in the Management of Constipation in Hospice Patients. Tarumi Y et al. JPSM, 2013.
  2. Once-Daily Opioids for Chronic Dyspnea: A Dose Increment and Pharmacovigilance Study. Currow DC et al. JPSM, 2011.
  3. Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial. Abernethy AP et al. Lancet, 2010.
  4. Does Feeding Tube Insertion and Its Timing Improve Survival? Teno JM et al. JAGS, 2012.
  5. Parenteral Hydration in Patients With Advanced Cancer: A Multicenter, Double-Blind, Placebo-Controlled Randomized Trial. Bruera E et al. JCO, 2013.
  6. Effect of Duloxetine on Pain, Function, and Quality of Life Among Patients With Chemotherapy-Induced Painful Peripheral Neuropathy: A Randomized Clinical Trial. Lavoie Smith EM et al. JAMA, 2013.
  7. Randomized Double-Blind Trial of Sublingual Atropine vs. Placebo for the Management of Death Rattle. Heisler M. JPSM, 2013.
Module 2: Advance Care Planning
  1. Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers. Steinhauser KE et al. JAMA, 2000
  2. A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). The SUPPORT Principal Investigators. JAMA, 1995
  3. Advance Directives and Outcomes
of Surrogate Decision Making before Death. Silveira MJ et al. NEJM, 2010
  4. A Communication Strategy and Brochure for Relatives of Patients Dying in the ICU. Lautrette A et al. NEJM, 2007
  5. Family Satisfaction with Family Conferences about End-of-life Care in the Intensive Care Unit: Increased Proportion of Family Speech is Associated with Increased Satisfaction. McDonagh JR et al. Crit Care Med, 2004
  6. Provision of Spiritual Support to Patients
With Advanced Cancer by Religious Communities and Associations With Medical Care
at the End of Life. Balboni TA et al.  JAMA Intern Med, 2013. 
  7. Family Perspectives on End-of-life Care at Last Place of Care. Teno JM et al. JAMA, 2004.
Module 3: Prognostication
  1. Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study. Christakis NA et al. BMJ, 2000
  2. Trends in Survival after In-Hospital Cardiac Arrest. Girotra S et al. NEJM, 2012
  3. Functional Status of Elderly Adults before and after Initiation of Dialysis. Tamura MK et al. NEJM, 2009
  4. Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer. Weeks JC et al. NEJM, 2012
  5. “It’s not just what the doctor tells me:” Factors that influence surrogate decision-makers’ perceptions of prognosis. Boyd EA et al. Crit Care Med, 2010.
Module 4: Health Systems & Policy
  1. Cost Savings Associated With US Hospital Palliative Care Consultation Programs. Morrison RS et al. Arch Intern Med, 2008
  2. Hospice Enrollment Saves Money For Medicare And Improves Care Quality Across A Number Of Different Lengths-Of-Stay. Kelley AS et al. Health Affairs, 2013
  3. Do Palliative Consultations Improve Patient Outcomes? Cassarett D et al. J Am Geriatr Soc, 2008. 
  4. Change in End-of-Life Care for Medicare Beneficiaries: Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009. Teno JM et al. JAMA, 2013
  5. Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer. Temel JS et al. NEJM, 2010
  6. Early Palliative Care in Advanced Lung Cancer: A Qualitative Study. Yoong J. JAMA Intern Med, 2013.

So what do you think we forgot? What studies do you most commonly think about, mention, and cite during your clinical work that's not on this list?

Read more »

Monday, March 7, 2016

Pressure Ulcers: An Underappreciated Public Health Issue

by Jeffrey M Levine MD

As a geriatric fellow back in the 1980's I became intrigued by the wide prevalence of pressure ulcers and how little literature there was on this disease.  Three decades later, they have not gone away and it amazes me that they are not on the list of recognized public health threats.  

According to the Agency for Healthcare Quality and Research, pressure ulcers affect up to 2.5 million patient per year, and related costs range from $9.1 to $11.6 billion per year in the US. Complications include pain, scarring, infection, prolonged rehabilitation, and permanent disability. They are largely preventable, and 60,000 patients die as a direct result of pressure ulcers each year. They are common across the healthcare continuum, and as many as 42% of patients in ICUs and 28% of hospice patients have pressure sores. According to a recent NPUAP monograph, pressure ulcer prevalence in long-term care ranges from 4.1% to 32.2%.  Pressure ulcers are closely associated with the perception of quality, and have become a risk-management burden for practitioners and facilities caring for patients with this disease. Despite these pressing concerns, pressure ulcers are not on the research funding agenda of the CDC

The statistics on pressure ulcers are eye-opening when compared to other, more widely recognized public health threats including influenza and gun related deaths. Influenza results in 36,000 deaths per year, and deaths in America from guns number roughly 32,000 per year. Pressure ulcers therefore cause nearly as many deaths per year as influenza and guns combined. The 2016 fiscal year budget for the CDC includes a request for $10 million for gun violence prevention research. There is already $187.5 million allocated for influenza planning and response. But there are no CDC funds allocated or requested for research on prevention and treatment of pressure ulcers. 

Given their prevalence, morbidity, and cost, it is puzzling that pressure ulcers are underappreciated as a public health issue. Plaintiff attorneys have certainly caught on, with more than 17,000 lawsuits annually. Perhaps it’s time to face this issue squarely by recognizing its importance and scope and increase funding toward research on pathophysiology, prevention, and treatment. Here are some avenues that require resource allocation:

  • Defining skin failure and the pathophysiology of skin changes at life’s end, and its impact upon prevention and avoidability.
  • Development of improved prevention technologies. 
  • Development of technologies for early detection of deep tissue injury. 
  • Development of improved electronic records that explicitly incorporate systems impacting skin assessment, prevention, and treatment.
  • Defining molecular mechanisms of tissue tolerance including inflammation, endothelial dysfunction, oxygen homeostasis, mitochondrial dysfunction, and vascular hyperpermeability.
  • Defining the unavoidable pressure ulcer, with development of a sound algorithm for determining when these wounds are preventable.
  • Developing evidence based, cost effective wound treatments. 
  • Defining when wounds become palliative and applicable treatment protocols.

In the 1800’s one of the greatest minds in medicine, Jean Martin Charcot, studied pressure ulcers but his example was not followed. Over a century and a half later, wound care shares little space in the medical school curriculum and most doctors receive little training on pressure ulcers. However the imperative for physicians to become more involved in wound care has grown as their prevalence increases with the elderly demographic and improved technologies to keep people alive. As pressure ulcers are an acknowledged geriatric syndrome, geriatricians are in a perfect position to help fill this gap. However pressure ulcers are a problem that geriatricians cannot tackle alone. Preventing and curing pressure ulcers is a multidisciplinary endeavor that will require allocation of resources to research, technology, systems improvement, and manpower.

* * * * * * * * * * * * * * *

References for this post include:

Pieper B (ed). Pressure ulcers: Prevalence, incidence, and implications for the future. NPUAP 2012.  

Inouoye et al. Geriatric Syndromes: Clinical, Research and Policy Implications of a Core Geriatric Concept. J Am Geriatr Soc. 2007 May; 55(5): 780–791.

Molinari et al. The annual impact of seasonal influenza in the US: Measuring disease burden and costs. Vaccine, 2007; 25 (27), 5086-5096.

AHRQ. Preventing Pressure Ulcers in Hospitals.

Burt T. Palliative Care of Pressure Ulcers in Long-Term Care. Ann Long-Term Care 2013; 21(3).

Read more »

Thursday, March 3, 2016

Chronic Cancer versus Non-Cancer Pain: A Distinction without a Difference?

Eric Widera, MD (@ewidera)

In 1824, Jeremy Bentham published the "Book of Fallacies" in which he criticized fifty arguments used in political debate and explained the sinister interests that led politicians to use them. One of these fallacies he describes as the "sham distinction", now known better as a "distinction without a difference". This logical fallacy appeals to a distinction between two two things that ultimately cannot be explained or defended in a meaningful way.  When it comes to cancer and non-cancer pain, one really must question why we are drawing a distinction between these two entities and whether it is science or politics that that demands there be a difference.

The Origins of the Distinction

The term "cancer pain" is relatively new, appearing in greater frequency over the last three decades in both medical journals (Figure 1) and in printed books (Figure 2).  Cancer was viewed as the emperor of all maladies, and pain one of its most feared outcomes.   Use of opioids for cancer pain was encouraged as patients were suffering and the prognosis of their malady inevitably led to short term use.

Figure 2: Use of the phrase "cancer pain" in printed media via Google Ngram

You can also see in figure 1 that the term "non-cancer pain" started to take off about two decades later.  As noted by an article published last week by John Peppin and Michael Schulman, "those using the term “chronic noncancer pain” were in two camps: those who felt that opioids should be avoided in patients without cancer, and those who felt they were yet one more tool for the treatment of these patients."  A good example of this is an article published in 1995 titled "Opioids for chronic pain of non-malignant origin--caring or crippling" in which an evolution of a distinction was discussed but no significant evidence is given to support a difference:
 The world of pain management, therefore, has evolved two very different models of managing pain. A drug treatment model with a strong emphasis on diagnosis for acute pain and cancer pain; and a behavioural, coping skills model for CPNMO [Chronic Pain of Non-Malignant Origin]. It was inevitable that clinicians versed in one model would begin to apply those principles to the management of pain in the other category.

The Logical Fallacy

The problem with this distinction is that there is very little evidence to support a difference between these two broad categories.  As Peppin and Schulman point out:
"These claims are primarily philosophical, rather than medical or physiologic. As mentioned, pain mechanisms do not discriminate between cancer and noncancer pathophysiology. Patients with cancer or those without cancer have essentially identical pain-generating physiologies, and thus the same mechanisms for the development of their pain (eg, inflammatory pain in a cancer patient will be the same physiological process as in a noncancer patient). Further, cancer patients are living longer and their original pain generators become chronic pain in and of themselves, little different from patients without cancer.

Even if you are more of a splitter than a lumper, it still doesn't make sense when you include what we know about the biology of cancer.   Cancer, despite recent "moonshot" ideas, is not a single entity.   There are numerous types of leukemia, lymphomas, skin cancers, bones cancers, lung cancers… The list can go on and on. The etiology of pain that may result from these cancers also vary: it can be due to muscle damage, bone invasion and central sensitization, nerve impingement or destruction, chemotherapy induced neuropathy, liver capsular expansion, and on and on the list goes.

From a medical and scientific aspect, it makes little sense to have these two broad categories of chronic pain.   But from a political and emotional aspect, it may make ones life a little easier, because who doesn't want to relieve the pain of a dying cancer patient.  But what about a cancer survivor?   Are they still considered to have cancer pain once the cancer is cured?  What if the pain is due to chemotherapy-induced neuropathy?   Who will fight their battle politically?

The Alternative

While it may feel wise to distinguish the terms cancer and non-cancer pain from each other, continued promotion of this idea is fraught with logical fallacies, and is best defended by emotions and politics rather than the state of science.

The alternative is to abandon the distinction for all of these reasons and use terms that actually help us understand the nature of an individuals pain and how best to manage it, which may or may not include opioids.  As Peppin and Schulman suggest:
Perhaps a more prudent, less charged set of terms would indicate the origin and generator of the pain. Therefore, a patient with chest-wall pain from radiation due to breast cancer would be labeled “chronic pain of breast cancer radiation-treatment origin”. The patient with pain from an advanced spondylolisthesis would be diagnosed with “chronic pain of spondylolisthesis origin”. The goal here is to continue to be patient-focused, relieve their suffering (instead of contributing to it), and help improve their lives. 
Read more »

10th Annual GeriPal / Pallimed Party

Plot Summary: A palliative care provider must leave her safe suburban surroundings and head for the heart of the big city to rescue a stranded colleague, unaware of the perilous adventures that await her and the fellow bloggers she's looking after who have tagged along.

Details: Come one, come all to the 10th annual GeriPal / Pallimed party at the Annual Assembly of AAHPM, HPNA, and SWHPN.  We will start at Cindy's around 9 PM. After that we will head to Plymouth Rooftop bar at 10 and Kasey's at 11pm.   This are rough estimates of time, so if you want to know the details, follow the hashtag #HPMparty or our Facebook pages where we will be posting updates on the next location.

Who: All are welcome, this is no exclusive crowd. There will be many writers from both websites at the party and we always like to meet readers and hear your feedback.

When: Thursday, March 10th. Start time 9 pm. End time TBD

Where:  We have a little schedule to keep this time, but if there is one thing to remember from past events, these are "rough" guides.  Follow our twitter and Facebook feeds, or type in #hpmparty in twitter to follow the live feed of where we are:
Ways to follow: 

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Thursday, February 25, 2016

I'll Have What She's Having: Goldilocks and the Hospice Benefit

by: Eric Widera (@ewidera)

Two reports came out last week that can easily lead one to opposite conclusions about the current state of hospice care in the U.S.

The first was a Wall Street Journal (WSJ) report on how hospice care is being used too early in the course of a Medicare beneficiary’s illness. The article can pretty much be summarized by its subheading: “More dementia patients and others who die slowly are receiving care, causing costs to rise."  NHPCO has a good response to the article, which I will not summarize here except by saying that my favorite line from it was : “People do not come with an expiration date, nor does their end-of life-care.”   While I agree with NHPCO's response, I still found the WSJ article fascinating, in particular the finding that beneficiaries who were enrolled in hospice for more than 365 days accounted for about 32% of Medicare hospice payments. More striking is that those with very long lengths of hospice lengths of stay (on average 1000 days) accounted for a very small proportion of hospice patients (1%) yet resulted in 14% of Medicare’s hospice spending.

The second report that came out is from the Dartmouth Atlas Project and sponsored by the Hartford Foundation. Karl Steinberg wrote a post about the new report on Pallimed, which I will not rehash here. But I will say that I’m most struck with the report's conclusion about hospice care in the US: “the data in this report suggest that we are still waiting too long to refer patients to hospice care.” More specifically, they found that 16.8% of Medicare decedents were enrolled in hospice care within three days of their deaths, a number that varied more than fourfold across hospital referral regions.

So, which is it? To soon? Too Late?

In the fairy tail Goldilocks and the Three Bears, Goldilocks found the porridge that was right for her, something that was not too hot and not too cold, but just right.  It may seem reasonable then to want the same thing that Goldilocks deemed optimal.  But really, who cares what Goldilocks thinks?    It was never her damn porridge to start with.  The chairs, the bed, and the porridge were all designed for the needs of someone else. And look what happened to her.  She ended up jumping from a window and is never heard or seen of again.

No, what we really need is to say good riddance to Goldilocks and think long and hard about who should really be deciding what is just right.
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Monday, February 15, 2016

Launching the Master of Science in Palliative Care Program

In June, 2015 I wrote about the need to for new training programs in palliative care because of the projected shortage in providers. At that time I wrote that: “Amos Bailey, MD, a well-known leader in the field of Palliative Medicine and a new colleague of mine at the University of Colorado has a pretty innovative idea. He has set up a task force to prepare an application to the Board of Regents to offer a new degree program: Master of Science in Palliative Care. This would be an inter-professional executive Masters that would be provided predominantly online (with three separate one-week on-campus intensives). This program will be designed for the clinicians (physicians and advance practice providers) who are already working and need or desire more training in Palliative Care” and asked people to complete a short survey to gauge interest.

Over the next 3 week 575 individuals completed the survey and 75% reported that they would be “interested” or “very interested” in such a program. This strong endorsement of the need and potential learner demand was key to complete our proposal for the new Master Science in Palliative Care.

We presented the proposal to the Board of Regents of the University of Colorado in September 2015. In a surprise move the Board of Regents elected to suspend their usual rules and voted for immediate approval of the project. This was the ringing endorsement of the Interprofessional Taskforce that had developed the proposal and the idea that we need diverse ways to expand the palliative work force. The first 4 courses (12 credit hours) which include core concepts and principles, communications, management of pain and non-pain symptom in and Interdisciplinary and Interprofessional format will constitute a Certificate in Palliative Care. Students are encouraged to complete advanced topics and earn a Master of Science in Palliative Care.

The Inaugural Class is being recruited now for Fall 2016. At the risk of sounding like a self-promoting special interest group (note: I personally have not been involved in the development of this program at all), I would encourage you to learn more about the program at here and ask your to share this exciting new opportunity with colleagues.

by: Dan Matlock, MD, MPH
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Tuesday, February 9, 2016

Visits by Hospice Professional Staff Matter: Why I believe that More is Better

by: Joan M Teno (@JoanMTeno)

A high quality hospice provides the best end of life care – something that I have documented in JAMA 2004 and Journal of Palliative Medicine 2015 articles. However, an important caveat is “high quality". Both my mother and great aunt died on hospice service, for which I am very grateful for the excellent hospice care each received.

Some recent papers that I have written about the variation in key processes of hospice care, including one published in JAMA Internal Medicine this week, may lead some of you to question whether I truly support hospice. Maybe you can rightly accuse me of not being a hospice advocate. I have always been inspired by Dom Berwick's central question as interim Director of the Centers for Medicare and Medicaid Services (CMS), “How will this policy impact and improve the care of Medicare Beneficiaries?”

So why have I concluded that visits by professional hospice staff matter in the last two days of life?

First, I don’t expect that 100% of hospice patients dying on routine home care (RHC) are visited in the last two days of life. Rather, I am concerned by the patterns that we observed in the analysis of FY 2014 administrative data: 1) Blacks were 30% less likely to get visits; 2) nearly one in five persons dying in a nursing home did not get a visit; 3) one in five dying on a Sunday did not get a visit by professional staff; 4) 8% of hospice programs that had at least 30 patients who died and were discharged on RHC did not provide any visits by professional staff in the last two days of life; and 5) finally the striking, geographic variation.

Previously, I have been an author in a study that reported Blacks had more unmet needs for pain and bereaved family wanted more information about pain management. This lack of visits raises an important concern. Historically, nursing home as site of hospice care has lower reported ratings of the quality of care –so the lack of visits may be a concern. My mother died in a nursing home – I am thankful for the nurses, social worker, and volunteers who visited her in the last days of her life, even though I as physician was at her bedside for most of the time in the last days of her life.

Second, a concern that has been mentioned is that family don’t want these visits. Perhaps, this should be a focus of future research. My experience with focus groups and in-depth interviews with families attest to the importance of these visits. For example, the words of a bereaved family member expresses this concern eloquently.
“I’m glad I (kept her at home) but I think towards the end… giving the medications and upping the medications seemed so fast. All of a sudden now she is on all this morphine and all this whatever it is. And that kind of bothered me too. It really did. Because it was like, my God, I’m giving her this stuff. Am I giving her too much? I’m not a trained medical person.”

My best educated guess is the observed variation is not being driven by family preference being different in the state of Rhode Island vs. Wisconsin. Something that I have said about feeding tube insertions and patterns of hospitalizations that I have called burdensome transitions.

Why not focus on visits by nurses’ aides, bereavement staff visits, and those by spiritual staff? The fact that we did not report those visits is not meant in anyway to under value the importance of those staff. Rather, our focus was to examine whether professional hospice staff who are responsible for the plan of care are reassessing patients at this critical time period.

The issue with rural hospice programs is important. I think that we need to test telemedicine intervention in hospice not as a means of saving money, but ensuring dying persons and their family receive the needed support.

I agree that visits in the last 2 days of life is a population based quality measure that should be examined in the context of national bench marks or expert opinion. If I was the CEO of a hospice program that made no visits by professional visits in the last two days of life, I would be concerned. Ultimately, I would look at the Consumer Assessment of Healthcare Providers and Systems hospice survey (CAHPs) Hospice results of my organizations. When I examined this in a small number of hospice programs as part of the validation of the Family Evaluation of Hospice Care (FEHC) survey, we found differences in overall rating of the quality of care and family report of concerns with training in pain management.

Is more better?

Time and time again, as health service researcher, I have questioned our current volume based financial incentives that has resulted in late referral to hospice, more stays in an ICU in the last 30 days of life, and multiple hospitalizations in the last 90 days of life. While hospice payment reform cuts RHC payment post day 61, the service intensity adjustment provides incentives for more care. Working as hospice medical director for nearly 20 years, I believe that incentives that result in more visits by an RN and /or MSW in the last week of life will improve the care of the dying. However as a health service researcher, I think it is important to examine whether this policy is effective based on interviews with bereaved family members as well as patient reported outcomes of symptom control in the last week of life.

This will be probably be one of the few times that my main hypothesis is that more is better. I truly hope it is.

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Monday, February 8, 2016

Aging Veterans on the Cover of The Gerontologist

I always had a soft spot for veterans, as my father saw action in the Pacific Theater and I grew up with his war mementos stashed in a corner of my basement.  A theme in the photos I've taken for covers on The Gerontologist has therefore been veterans, with images that reflect their pride in serving our country.  I was recently asked to provide a pic for the Special Issue on Aging Veterans, seen below.  This photo was taken at the Tennessee State Veterans Home in Murphreesboro, and features a Viet Nam vet named Frank Coven being hugged by his nurse Sammie Fox.  This image exemplifies how the vets were treated in this facility. 
The photo below was published on TG in December 2013 before the design change.  It features Stanley Brown who was one of the first US soldiers to enter Japan after the surrender in WWII.  He told me, "I have so many stories you couldn't have time to hear all of them!"
The photo below was published on the cover of TG in August 2010 and features JT Freeman - one of the original Tuskegee Airmen.  This was an African-American flying outfit that saw action in Europe in WWII.  After I took his picture, JT invited me to a meeting of the Tuskegee Airmen held in a hanger at Kennedy Airport. One of the old vets told me of the rampant racism at the time. He told me of one commanding officer who objected to the Tuskegee Airmen because they didn't like African-Americans bombing white people!  Anyway, JT was so pleased that I put him on the cover of a magazine that he wanted me to become an honorary member of the Airmen. And take a close look - thats the Congressional Medal of Honor hanging around his neck.
I've photographed several Veterans Day parades in Manhattan. The event starts in Madison Square, which is a few blocks from my office. I took the photo below in a group of Korean War vets, and it was published on TG in December 2001.
Below is a picture that was not taken by me, but one I wish I took. The cover is from June 1995 and remains one of my favorites. The photographer was Neil G. Rogers and the subject is Carl F. Grimm, who served in the 13th Airborne in WWII and proudly holds his bugle. The photo was taken in the US Soldiers and Airmen's Home in Washington DC.  
There are 15 articles in the current Special Issue of TG on aging veterans.  In the editorial, Rachel Pruchno notes that there are over 20 million veterans alive today, with a median age of 64 years. The articles cover issues related to military service such as PTSD, longevity, functional decline, and community adjustment. These articles set the stage for the next generation of research on how military experience affects the aging process.  Its been a privilege for me to contribute to this publication over the years, and a special honor to present the cover photo on this issue.

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Thursday, February 4, 2016

Potpourri from clinical work IX: BiPaP, Movantik, and Lord Grantham

by: Alex Smith, @alexsmithMD

This is the ninth iteration in the potpourri from clinical work series, where I basically raise issues that were interesting from recent time on the palliative care service.  For prior iterations just enter the word "potpourri" into the search box on the right side of the screen.

1. BiPaP for patients who are DNI.  This came up for a hospitalized patient with a severe pulmonary infection and effusion (fluid around the lung).  The idea was BiPaP, a tight fitting mask hooked up to a mini-ventilator, might be used as a bridge until a needle could remove some of the fluid around his lung.  It worked.  Though his oxygenation improved, he died without ever regaining consciousness.  BiPaP is in a grey zone.  One useful question I sometime use in code status discussions  (learned from Gail Gazelle) is to ask people, "How do you feel about living on machines?"  People who don't want to live on machines are generally DNI.  The problem is that BiPaP is a machine.  There isn't the tube down the throat, but in many other respects it resembles intubation and ventilation.  I've had patients with severe dyspnea try it and find relief, only to say the next day, "Get this mask off! It's too tight."  These non-invasive devices are only going to get smaller and more comfortable for people.  It will be harder and harder to figure out where these machines fit into our understanding of the patients goals and preferences.  Incremental small decisions to try this or try that can lead one down a path that eventually strays far from the patient's goals and values.

2. Walking the halls.  I love that we have transformed the culture of our hospital.  When I was a medical student here around 15 years ago, the patients stayed in their beds.  All the time.  Now our older adult patients are up and about, often with nurses or nurses aids walking with them or trailing behind.  The emphasis on mobility is awesome.  One unintended side effect is that it's harder and harder for our clinical team to round and talk about patients in the hallway.  Patients keep wandering into our conversations.  We had one wonderful older hospitalized gentleman who would come and stand in our rounds, with his hands behind his back, nodding as if he was a team member.  We'd slide over, and he'd slide with us.  We'd go into a patient room, and he'd start to wander after us, only to be pulled back by his nurse.  We loved it.

3.  Movantik (naloxegal).  OK, I live a sheltered life.  I had not heard of this medication.  When I was showing the residents and fellows on service our GeriPal opioid dysmotility dance video,  they said, "Have you seen the commercial for this new opioid constipation medication?"  I hadn't seen it (you see how little TV we watch these days).  So what's up with this new medication?  It looks like it costs almost $300/month, or $10/day.  I gather it's a peripheral opioid antagonist, kind of like an oral version of methylaltrexone. The commercial presents it as a first line treatment (misleading).  Does anyone have experience and want to comment?  Is this actually an awesome medication that we should anxiously await going generic?  How is the evidence?

4.  Lord Grantham.  On the latest episode of Downton (spoiler alert) (OK, I watch some TV, but no Movantik commercials!) Lord Grantham has what looks like a convulsive upper GI bleed.  Very dramatic.  The New York Times described it as "Downton meet Alien."  I've had two patients die in the last month with rather dramatic bleeds due to head and neck cancer eroding into blood vessels.  Same sort of blood pouring out of the mouth and nose.  Very disturbing to the patients and their families.  And that was with the best care and medications we can provide in a hospital setting.  Going over one of these patients in Morbidity and Mortality conference, I was asked how to manage these patients at home.  Though I'm an inpatient provider, I still felt at a loss.  Prepare the family. Dark towels.  Dark sheets.  As the Lord Grantham episode reminds - bleeds at home can be gruesome and overwhelming.  One of our outpatient docs said, sometimes you may have to call 911, even if they're on hospice.  Other suggestions?  Anyone tried tranexamic acid? 

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Wednesday, February 3, 2016

The Opioids Issue: Morphine versus All Comers

by: Eric Widera (@ewidera)

Next year marks morphine's 200th anniversary as an analgesic (while it was discovered in 1804, it was first marketed to the public in 1817).  In honor of this historic event, I'm going to dedicate this GeriPal post to morphine by describing three recent trials that continue to show that morphine can hold its own when it comes to pain relief.

1. A randomized control trial of morphine vs either codeine and tramadol

We’ve never held back our disdain for the likes of codeine and tramadol on GeriPal, so why stop now? A great study recently came out that evaluated the use of “weak opioids” (you know, those step II drugs on the WHO  analgesic ladder) versus morphine for the relief of cancer related pain. This was a 28-day, open-label randomized controlled study done in 240 opioid na├»ve adults with moderate cancer pain (4-6 out of 10 pain). The participants were given either oral morphine or a weak opioid (tramadol with or without paracetamol or codeine in fixed combination with paracetamol.)  

The primary outcome of a pain reduction of 20% or more from baseline occurred in 88% of the low-dose morphine and in 58% of the weak-opioid group (odds risk, 6.18; 95% CI, 3.12 to 12.24; P,.001). The benefits of morphine over tramadol/codiene were evident as early as the 1 week observation point. Clinically meaningful (30%) and highly meaningful (50%) pain reduction from baseline was also significantly higher in the low-dose morphine group.  A change in the assigned treatment occurred more frequently in the tramadol/codiene group, because of inadequate analgesia. Adverse effects were similar in both groups.

This is just more evidence that morphine is a more effective mediation to reduce pain than tramadol and codeine. Combining this with other studies on the risks of tramadol, I’m not sure why one would ever chose these “weak opioids." I know I never do. It also calls into question the whole idea of a step II in the WHO analgesic ladder.

2. Another randomized control study of morphine or oxycodone for cancer-related pain

This is a little bit older of a study (dates back all the way to 2015) but a great one from my point of view. It was a randomized control study looking at the the clinical response to oral morphine vs. oral oxycodone when used as first-line or second-line (after switching) treatment in patients with cancer-related pain. In the first part of this study, patients were randomized to either of these agents and the doses were titrated until the patient reported adequate pain control. If they didn't respond to the first-line opioid (either because of inadequate analgesia or unacceptable adverse effects) they were switched to the other opioid.

They found no significant difference between the numbers of patients responding to morphine (62%) or oxycodone (67%) when used as a first-line opioid, or when used as a second line therapy when switching due to inadequate response to the first line therapy. Of most interest, over half of those who didn't respond to first line therapies got relief with the second line therapy, giving some much needed evidence to back up the practice of opioid rotations.

3. Morphine versus NSAIDs for malignant pleural effusion pleurodesis

What’s better, opioids or NSAIDs for pain control in patients with malignant pleural effusions? This non-blinded study looked at that question among 320 patients requiring pleurodesis in 16 UK hospitals from 2007 to 2013 (they also looked at the effects of different sizes of chest tubes, but I wont talk about that here). Patients with malignant effusions were all given acetaminophen around the clock and randomized to receive either oral morphine (starting at 10mg QID to max of 80mg/24 hours) vs ibuprofen (starting at 800mg TID to max of 2.4g/24 hours). In either group, if pain got to bad, patients could use IV morphine as a breakthrough.

The authors of the study found that mean pain scores as measured by a 100 point visual analog scale were no different in the morphine PO group vs the NSAID group (mean VAS score, 23.8mm in opioid vs 22.1 mm in NSAID; adjusted difference, −1.5 mm; P = .40). However, the NSAID group required more rescue analgesia (38% in NSAID group and 26% in oral morphine). Adverse effects looked similar although the NSAID group had a statistically significant increase in creatinine that was clinically less significant (by 0.1 mg/dl).

What am I taking from this study? Well, to put bluntly, there is little evidence that NSAIDs are better than opioids for for malignant pleural effusion pleurodesis, and even when you used them, a third of patients will still required morphine for breakthrough pain control.
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Friday, January 29, 2016

VitalTalk: Mastering Serious Illness Communication

by: Eric Widera (@ewidera)

It was with some hesitancy I decided last year to take the VitalTalk Faculty Development course. Why the hesitancy? Honestly, I thought to myself that I've been doing palliative care for over a decade. I've taught fellows, residents, medical students, and a whole host of other health care professionals.  I've wrote book chapters on this stuff.  Plus, I've read everything that I could get my hands on from the VitalTalk creators Tony Back, James Tulsky, and Bob Arnold.  What, I thought, am I going to get out of this? As it turned out, a lot.

VitalTalk changed the way I teach communication.  As one example, any of my fellows that I work with can now recite word for word the questions that they know I'll be asking at the end of a family meeting: "What is one thing that went well that you want to continue" and "what one thing do you want to do differently in the future?"   These questions are part of the goal I set for myself at VitalTalk to change my feedback to one that rambled on for 15 minutes to one that is brief, specific, learner centric and future-oriented.  And you know what?  It works!

I can say unequivocally that VitalTalk has made me better at serious illness communication and a more effective teacher.  So, whether you considering ways to deepen your skills in communication or you are interested in learning how to teach serious illness communication techniques to others, I can’t encourage you more to take one of the following VitalTalk's 2016 Courses:

1. Mastering Tough Conversations: This is a two day, advanced level, hands on learning experience in Aspen (I know, rough, right?)  You get to learn communication skills around advance care planning early in a patient’s illness, late goals of care conversations, dealing with requests for treatments with minimal efficacy, and more!  Here is a clip of what happens:

2. VitalTalk Faculty Development:  Another great Aspen adventure.  This one is a 4 day train-the-trainer faculty development program for physicians and/or advance practice providers who are committed to becoming communication educators (and potentially VitalTalk faculty).  This is the one that I did, and it truly blew me away.   Take a look at this clip to learn a little more:

3. VitalTalk online course: This is a new, interactive online course arranged around a series of 15 modules.  In addition to a videos and other instructional tools, participants are partnered with VitalTalk mentors who give individualized feedback on their communication skills.
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Thursday, January 21, 2016

Reaction to JAMA theme issue on Death, Dying, and End of Life

by: Alex Smith, @AlexSmithMD

JAMA just came out with a theme issue subtitled Death, Dying, and End of Life.  Here are some quick thoughts and first reactions.  I got through the viewpoints and stories.  I left a lot on the table for another day, including great work by Atul Gawande, Alexi Wright, Holly Prigerson, Justin Beckelman, Zeke Emanuel, Saul Becker, Leora Horwitz, and Joel Weissman. 

Theme: On the one hand, it's great that JAMA is finally paying attention to these issues. Kudos. On the other hand, we've put in hard work in palliative care to change the frame from "death, dying and end of life" to "living well with serious illness".  Wouldn't it be nice to see a theme issue about promoting quality of life for people with serious illness and their caregivers?

Point and counterpoints on physician assisted death.  On the pro side we have Tim Quill, Tony Back, and Susan Block (I'll call it the Quill piece).  Against is a viewpoint by Tony Yang and Farr Curlin (I'll call it the Yang piece).  I'm deeply ambivalent about this subject.  After my dad was diagnosed with fatal brain cancer, my parents were very pro.  My mom even organized a book signing in Michigan with Tim Quill.  Since training in palliative care, all requests for help to die so far have gone away with treatment of reversible sources of suffering (physical, social, psychological).  So far. I worry about those who will take short cuts.  I grew up with Kavorkian.    I worry about the vulnerable.
  • Excellent "words to say" in response to requests for physician assisted death in the Quill Piece.  Along with AAHPM's recent 1 page brief on how to respond to requests for physician assisted death, we have a terrific battery of teaching material.  As palliative care and geriatrics providers, we have a responsibility to educate front line clinicians who will receive the overwhelming majority of such requests about how they should respond.
  • The Yang piece (against) makes it's most compelling arguments when it asserts that patients do not have a right to demand that physicians help them kill themselves.  "The heart of the medical profession is not providing services.  Rather, the physician's constitutive professional role is to attend to those who are sick and debilitated, seeking to preserve the measure of health that can be preserved, and to help them bear the pain and progressive loss of autonomy and bodily function that illness often brings."
Legal summaries of physician assisted death.  There are a couple of good legal summaries of the physician assisted suicide laws in various states (here and here).  Missing from this conversation (ahem): perspectives of California physicians.  The piece about California was written by people at Brown.  It's a good piece.  But why JAMA did you reject our viewpoint?  Or if not our viewpoint, solicit perspectives of other California physicians?  OK, I'm over it now.  Really.

Canada.  Wonderful piece by Harvey Chochinov (he of dignity therapy fame).  Harvey is chairing the Canadian External Panel exploring options for a legislative response to the Canadian Supreme Court ruling that physician assisted death must be legal.  He notes the contradiction between the Supreme Courts ruling physician assisted death should be legal as a deeply personal response to pain and suffering, and the reality that majority of people who chose physician assisted suicide where legal do so out of existential concerns and need for control - not physical suffering.  Jerry Brown's reasoning was similar (pain) when he signed the law in California. 

Rational use of ICU's at the end of life.  Awesome piece by Derek Angus and Robert Troug.  They propose 5 strategies to improve use of the ICU for seriously ill and dying patients:
  1. Reduce inappropriate ICU admissions.  Discuss ICU type care in goals of care conversations.  Favorite part: reduce the number of ICU beds.  Make them scarce and clinicians will be more responsible and careful in who they admit.
  2. Re-evaluate goals of care during the ICU stay.  The ICU stay should be viewed as a time limited trial, not an open ended commitment.  Yes!
  3. Improve shared decision making with patients and families.  Love is not enough.  Compassion is not enough.  Clinicians need training in how to have these conversations.  This is a skill, not an emotion.  Heck yeah!
  4. Improve consensus building among the entire clinical team.  Agree on prognosis.  Get on the same page.  Don't send mixed messages.
  5. Make ICUs more humane.  "It is time to challenge the notion that ICU care includes pain, incapacitation, and mental anguish as inherent and unavoidable adverse effects."  ICU care and good palliative care are not incompatible.  They should go hand in hand.  Right on!

Make Medicare hospice "open access."  This is a nice plea from Oreofe Odejide to expand hospice to allow concurrent use with disease directed care.  The poignant case of a  66 year old with a blood born cancer who obtains relief of fatigue and bleeding from transfusions of blood and platelets, disallowed by many hospices due to lack of affordability.

An attack on POLSTAuthors are Kendra Moore, Emily Rubin, and Scott Halpern.  I'm a friend of Scott's and work professionally with him. So while I mostly disagree, rather than elaborating extensively, I'll quote Laura Petrillo, who responds to Moore's assertion that POLST "may actually curtail patient-centered decision making when applied more broadly."  Laura writes, "We need to encourage advance care planning for a lot more than resuscitation preferences (to the degree that that is possible).. but why the extreme injunction to curtail all POLST implementation/use as a quality metric? Instead of pointing a finger at POLST we should be questioning our status quo of aggressive resuscitation in advanced illness. The POLST is a necessary reaction so that people don't get assaulted by EMS! And it's an interesting thought, but there's no evidence (that I know of), that POLST completion limits other kinds of conversation.  It's conjecture."  I will say that a nurse researcher was just in my office who was very disappointed in the quality of the POLST conversation a clinician had her sick relative.  There is anecdotal reason to be concerned.  On the other hand, I've seen many wonderful conversations evolve from the decision to complete a POLST.  Those are important anecdotes too.  Let's not throw out the baby with the bathwater.

What would mom want?  Author Teddi Anderson Curry.  Oy.  Vey.  This is heavy.  And great reading.  A daughter is asked by a relative to consider administering a fatal dose of morphine to her mother, dying of COPD.  Would her mother have wanted it?  This piece speaks eloquently of the potential emotional and moral cost of ending another's life.

A plea to expose medical students to dying patients.  Author Daniel Shalev.  Nice, somewhat long story, that makes the point that medical students should learn how to care for dying patients.  It's an integral part of medical education.

Hope is that Thing With Feathers.  Author Larry Kripe.  Great story about an oncologist learning hard lessons about hope.  Though I'm an amateur birder and gardener too, I didn't really get the Emily Dickenson bird analogy.  Can someone explain it to me?

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