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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Wednesday, January 13, 2016

When Breath Becomes Air: A Review

“And with that, the future I had imagined, the one just about to be realized, the culmination of decades of striving, evaporated.” 
Paul Kalanithi
Nearly twelve months into my residency training, I learned that one of my best friends from medical school died at the age of 28. Through all the grief of losing a close friend, and the sorrow I felt for his family, I couldn't help shake a nagging question that washed over me in waves, particularly in days where I was overwhelmed or burnt-out as a trainee, and one that I felt guilty even having: “was it worth it?” Was it worth it for him to go through years of exhaustive medical training that consumed the majority of his life, only for it to be taken away so close to the ultimate realization of all of his efforts. In hindsight, it was not really a question I was asking of his life, but of mine.  Was it worth striving so hard through residency knowing that at any time, I may meet the same untimely fate?

Reading through Paul Kalanithi’s new memoir, When Breath Becomes Air, I could not help but think of this question. Kalanithi was in his final year of training as a neurosurgeon, probably one of the most arduous and lengthy career paths one can take in medicine, when he was diagnosed with widely metastatic lung cancer. The book chronicles how his life changed after receiving the diagnosis, one that he knew was terminal despite his oncologists unwavering resistance to give him a prognosis. He writes eloquently about how hope, denial, the prospect of death, and the ever changing perception of time is felt by someone living with a disease that has its ebbs and flows, but ultimately is relentless in its progression.  The book is both incredibly magnificent and tragically sad, but at no point do you ever feel pity, as his strength appears to only grow as his body becomes more frail.

There were several areas in the book where I felt such a strong kinship with Kalanithi, one that will echo with many others who have chosen a career caring for the seriously ill in part to better understand the nature of death and dying. Kalanithi writes about how he started his career “in part, to pursue death: to grasp it, uncloak it, and see it eye-to-eye, unblinking.” Despite though being fully immersed in a life that intertwines life and death, he writes:
“I began to suspect that being so close to the fiery light of such moments only blinded me to their nature, like trying to learn astronomy by staring directly at the sun. I was not yet with patients in their pivotal moments, I was merely at those pivotal moments. I observed a lot of suffering; worse, I became inured in it. Drowning, even in blood, one adapts, learns to float, to swim, even to enjoy life, bonding with nurses, doctors, and others who are clinging to the same raft, caught in the same tide.”

The most poignant part of this book for me was his use of a word that was threaded through the entire memoir: “potential.” Initially this was in description of how his medical training was “relentlessly future-oriented," one that tirelessly built potential, a potential that he would never be realize after the diagnosis of his cancer. Later in the book, as Kalanithi explores what brings meaning to ones life, he writes about how the act and effort of working towards something, is meaningful in itself:
"Years ago, it had occurred to me that Darwin and Nietzsche agreed on one thing: the defining characteristic of the organism is striving.  Describing life otherwise was like painting a tiger without its strips."
I am not sure I would have the same unwavering dedication to my professional career as Kalanithi did when he decided to continue with his neurosurgical training after his diagnosis.  With that said, Kalanithi’s book serves as a reminder that striving to bring meaning and purpose to ones life can take many forms.  The challenge is to be "neither blind to, nor bound by, death's approach."

by: Eric Widera (@ewidera)
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Wednesday, January 6, 2016

Music & Art on the Cover of The Gerontologist

The current cover of The Gerontologist features a musician at the local Octoberfest, a yearly block party that celebrates the German immigrant heritage of my neighborhood in Manhattan that is now only a memory. TG is the flagship journal of the Gerontological Society of America, the nation's oldest and largest interdisciplinary organization devoted to research, education, and practice in the field of aging.  Looking back at two decades of covers that I provided to TG, art and music have been a constant theme that captivated me as I visually explored the topic of aging.  I view it as spice that adds meaning and purpose to growing old. In this post I look back and show this side of my portfolio of covers.
Most of my work consists of shots taken on the spur of the moment of people I pass on the street or in my travels.   When asked by the editors to provide a cover for the special issue on Successful Aging, I took a train to Westchester to photograph Tao Porchon, a 90 year old dancer and yoga instructor.
This is how TG looked before the design change.  I photographed this blind musician in La Paz, Bolivia as he sang sad songs in the main square of the city.  I've been to South America several times with the goal of photographing aging, and several of these shots made it to the covers of TG.
Through my connections at the National Arts Club in Manhattan I was able to photograph the hands of this 100 year old painter.  Although he could barely walk, he told me his fingers were as nimble as they were when in his 20's.
In another photo taken in Bolivia, this elderly shaman played flute on top of a mountain at the dawn of the Summer Solstice on Lake Titicaca.  The experience of climbing up in the dark to hear him and watch the welcoming ceremony was exhilarating.
Edith O'Hara was founder of the Thirteenth Street Theater, an Off-Broadway performance space in Greenwich Village.  I photographed her on my way to make rounds at St. Vincents Hospital, a New York City institution which closed in 2010.  As a doctor in this neighborhood, I had the opportunity to care for many of the elderly artists and performers who once inhabited this now chic and gentrified part of Manhattan.
Mr Quiztow was an itinerant musician who spent summers playing on the streets of Cape Cod.  He entertained small crowds with his keyboard.  I photographed him in Provincetown in 2002.
Art and music are expressions of creativity, skill, and imagination that persist and even flourish in old age. They nourish the human spirit, facilitating connections with others that are essential components of successful aging.  I have tried to convey this through my work on the covers of The Gerontologist.  

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Tuesday, January 5, 2016

Timing of Palliative Care Consultations – Is Earlier Better?

Growth in inpatient palliative care over the last decade has been remarkable. A study published this month showed that in 1998 only 15% of hospitals with more than 50 beds had an inpatient palliative care program. That numbers is now 67% nationally. While this is great news, one can't help to think that the majority of patients facing a serious illness, such as advanced cancer, are not in the hospital. A study published this week in  JPM by Colin Scibetta Colin, Kathleen Kerr, Joseph Mcguire, and Mike Rabow gives us more weight when advocating for improved early access to palliative care through the delivery of outpatient consultations.

What they did

The authors included patients with solid tumors who died between January 2010 and May 2012 and who received care in the final 6 months of life at the UCSF Helen Diller Family Comprehensive Cancer Center. They used claims data to identify patients who had involvement by either the outpatient or inpatient palliative care service. The categorized these indivudals as either having:
  1. early palliative care: the initial palliative care contact occurred more than 90 days before death
  2. late palliative care: the initial contact was within the last 90 days of life.
The outcomes of interest included NQF EOL quality metrics to assess differences in utilization (ICU days in final month of life and multiple emergency department visits in the final month of life) as well as death in the acute care setting, 30-day mortality, death within 3 days of hospital discharge, and inpatient admissions in the last month of life. They also looked at direct cost of care to the health system for care delivered in the inpatient and outpatient settings in the 6 months preceding death.

What they found

Among the 297 decidents included in this study, 93 (31.5%) had early palliative care, while 204 (22.1%) had late-palliative care. Both the early and late group looked the same, except that patients with urologic or gynecologic cancers were more likely to have early palliative care than those with other cancers. Most of the early palliative care was attributed to being seen as an outpatient, while late palliative care was mostly delivered in the hospital, despite being seen in an outpatient oncology clinic during the 91–180 days prior to death.

Utilization – earlier is better

Compared to the later palliative care group, those who got early palliative care had:

  • lower rates of inpatient admissions in the last 30 days of life (33% versus 66%)
  • lower rates of ICU use in last month of life (5% versus 20%) 
  • fewer emergency department visits in the last month of life (34% versus 54%) 
  • a lower rate of inpatient death (15% versus 34%) 
  • fewer deaths within three days of hospital discharge (16% versus 39%)
  • lower 30-day mortality rates post hospital admission (33% versus 66%)

Cost of care – earlier is better

Compared to patients who had late palliative care, the early palliative care group had significantly less direct costs ($32,095/patient versus $37,293/patient). This was largely due to a significant decrease in inpatient direct costs (average of $19,067/patient versus $25,754/patient, p = 0.006), as the direct costs for outpatient care in the final 6 months of life were not statistically significantly different (average of $13,040/patient versus $11,549/patient), p = 0.85).

Take Home Points

I think there are three main take home points from this study:

1) If you want to significantly improve early access to palliative care, you must deliver this care outside of the hospital setting. We’ve seen this with our own data at our medical center. The second we opened up a palliative care clinic nearly a decade ago, our time from consult to death increased from a little less to a month to now over half a year.

2) If you improve early access to palliative care by developing an outpatient clinic, you will see a drop in inpatient deaths. Again, we’ve seen this in our own medical center.   The drop in inpatient deaths though creates problems if quality metrics are only measuring what happens to inpatient deaths (the easiest deaths to capture).  For high quality metrics, all deaths need to be captured, something that is difficult in a fragmented health care system.

3) The delivery of high quality of care can also be cost-effective care. This study further adds to the growing list of studies that palliative care can not only can improve the quality of care for patients with serious illness, but can do it in a way that also reduces total health care costs.

by: Eric Widera (@ewidera)
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Monday, December 28, 2015

Families caring for families

by: Amy Getter, who blogs regularly at hospicediary.com

“A nation’s greatness is measured by how it treats its weakest members.” Mahatma Ghandi.

When my children were little, I provided day care in my home, and I often heard my working mothers make comments about having “quality time” in the evening with their kids. I wondered, having my own kids and knowing the busy times around dinner, followed by bathing, bedtime stories, and night time rituals, how that chaotic amount of doing could actually be referred to as “the quality” time. I considered all the hours during the day: sitting on the couch and reading at story time, or kissing the booboos from play time outside, or exclaiming on the beauty of a messy art project, or carefully saving that first lost tooth; and I knew how much those working moms missed that I was privy to. It’s true, there are lots of other things moms are busy doing during the average day, and children don’t have just our undivided attention, but I certainly had the opportunities with my daycare children that their mothers missed throughout the day. I never quite believed that my nine or ten hours of time with their children was not also “quality time” as much as two or three hours of mayhem every evening. This is what I remembered when I listened to a video on a website touting nursing home care. I remembered those children, and how much they would have rather been at home, with their own mothers providing what I did throughout their day.

The woman on the video, after taking her spouse to a nursing home, says, “The best thing for him was to be where his physical needs could be met 24 hours a day and I could visit and take care of his emotional needs…I’m not so stressed and the time I do spend with him is loving time, not frenzied attempts to get him bathed and dressed…”

It is a tremendously difficult decision to leave a loved one behind, for others to care for. But let’s be honest, no one in the nursing home is going to love that man the same as his wife does. And no amount of social interaction or professional care is the same as the loving care from family. And my guess is, none of us will be asking to be placed in a nursing home when we are elderly and infirm. I hate to criticize what has become an essential in our current day families, but leaving the care of our children and elderly to others is a very sad state of affairs. I wish it was the exception, and not so common that no one seems surprised. I also know there is no easy answer for families, a looming problem created by the financial and emotional burden of caregiving. We appear to live in a culture that necessitates institutionalizing care that used to be performed by relatives.

But as I leave my elderly couple who are desperately trying to remain in their home while he daily declines, I realize how many things are not available to them in terms of real support. There are no family members to help. They will have to pay an exorbitant amount of money for hired help, for only a few hours a day, which is not nearly what is needed. It’s a problem I see on a weekly basis. Another visit, where the care of a demented mother is shared by two daughters, leaves my head spinning at the constant drone of an elderly woman’s confused, whining voice interspersed with the sleep deprived daughter’s tearful complaint about mom’s broken sleep. The daughters’ lives are put on hold, while they provide all the daily care without respite, because Medicare doesn’t consider home care assistance reimbursable.

As a nurse, I care for my patients; I try to do the very best for them. But a visiting nurse is so inadequate when help is needed around the clock. I know what it was to care for my own mother as she died. The work was difficult and burdensome, 24 hours a day, with lost time and lost resources (costliness that included monetary and physical and emotional burden, none of this reimbursed by any insurance coverage). I also know the rewards for myself and my sisters far outweighed the feelings of ineptness and bone-weary fatigue. It was worth it… all of it. And I hear the same from so many families who journey through the end times with their loved ones. Sorrow, and relief, and somewhere in the midst of those feelings, a sense of accomplishment… a job no one really desires, but a job well done; one that took an entire family’s shared efforts.

I read a report recently that touted providing EOL care in the palliative care wing of the hospital, and in the hospice inpatient center, claiming that this is an improvement over not too many years ago when most deaths occurred in the hospital ICU. I guess I’m not really seeing the nuances here. Most everyone I speak with wants to stay and die at home. Let’s stop telling ourselves that it’s the same thing, for someone else to do it, and we can “just be the spouse, the son, the parent, the family”. Let’s stop advocating for “experts” to provide care, and let’s begin really supporting those who choose to be caregivers, and instill confidence that they can indeed do the work, and let’s provide social programs that address caregiving needs for every family. (More Medicare dollars allocated for care provision at home instead of ICU stays and futile treatment the last year of life?) For centuries, average families have cared for their dying loved ones without needing a team of experts or a specialized care unit. Let’s find ways in government spending that can practically support the day to day care needs of our children and elderly, without requiring institutionalization.

I understand not everyone can stay at home with families, and I’m thankful for the daycares and the care facilities with dedicated staff that provide the necessary means to care for our vulnerable populations; because sometimes that is the only possible option. But what if this was the exception and not the norm? If the opportunity, practical and monetary support and ability are combined, caring for our loved ones is more than just a possibility. It is the gift that we model for the next generation, so that families caring for families does not become a lost art.

Read more »

Thursday, December 17, 2015

PTSD at the end of life

Source: Wikimedia

by: Alex Smith, @AlexSmithMD

I want to draw GeriPal readers attention to a remarkably powerful story in the current issue of NEJM by VJ Periyakoil, MD, a geriatrician and palliative medicine physician at Stanford and the Palo Alto VA (tweets @palliator).  The story is titled, "A Never-Ending Battle."

VJ tells the story of a man who has been haunted his whole life by memories of his time in Vietnam as a scout.  He sleeps in a different room from his wife out of fear he will harm her during the night while experiencing a nightmare.  He doesn't want to take pain medications because they make the PTSD symptoms worse.

And finally, while VJ is probing an ulcer, he tells the horrific story of what haunts him about his Vietnam experience.

When you read it, you too will feel haunted.

Ken Covinsky posted about PTSD in late life way back in 2010.  At that time, he noted:

As with my patients, many will be reluctant to report symptoms of post-traumatic stress. You must ask. Many patients with flashbacks and nightmares may just request sleeping pills.
On our clinical palliative care service at the San Francisco VA we have also observed PTSD symptoms escalating near the end of life.  As VJ notes in her essay, many of the medications we use in palliative care can lead to fuzzy thinking that erodes protective psychological barriers.  In addition, this is a time when Veterans reviewing all their actions - the good and the bad - and coming to terms with their life as they've lived it.

As in VJ's powerful story of this veteran, some of these actions are hard, or near impossible, to reconcile.
Read more »

Wednesday, December 16, 2015

The most useless thing we routinely teach trainees? A vote for “A&Ox3”

Source: Wikimedia

by: Winston Chiong (@WinstonChiong)

As a neurologist, I read this article and was reminded of one of my pet peeves in how we teach trainees. Rapoport and Rapoport note the ubiquity of starting the mental status examination with an assessment of the patient’s alertness and orientation to “person, place and time.” Orientation to person is supposedly assessed by asking the patient to state his or her own name, and its traditional placement at the start of presenting the physical examination (just after the vital signs) might suggest that this assessment is of high clinical value.

Of course, it’s actually just about useless. A couple really nice quotes from Rapoport and Rapoport:

Unlike other principal components of the neurologic examination, orientation to person does not clearly correspond to a localizable function of the brain or nervous system, and there is no consensus on how it should be tested, what it signifies, and under what circumstances—if ever—it can truly be lost.

Although we have long searched for such a case, from our own experience in examining neurologic and neurosurgical patients, we can provide no example of a conscious patient unable to state or appropriately respond to his or her name—apart from aphasic patients, malingerers, and memorable amnestics romanticized in film and literary fiction. “Orientation to name” is highly resistant to perturbation, even in advanced neurologic disease.

I’ll add that I’ve cared for a handful of patients with transient global amnesia, a fascinating and thankfully temporary condition in which patients are unable to form new memories, repetitively ask where they are and what they’re doing, and are often disoriented to the decade. These patients never forget their names. Similarly, patients with advanced dementia who can no longer correctly identify close family members remember their own names, pretty much as long as they can meaningfully respond to any other question. There are rare psychiatric patients with total autobiographical dissociative amnesia (so I’ve heard), but their presentation is obvious and unusual enough that we don’t need to screen for them in a general examination.  

Thus, when I read or hear that a patient is “alert and oriented to person, place and time” (or worse: “A & O times three”), I tend to assume that the doc reporting this element of the exam is either very green, or lying. Because really, what astute clinician actually asks all of his or her patients to state their own names? Is there any context in which this is even conceivably useful?

So I’m nodding along to Rapoport and Rapoport’s historical discussion of the German origins of examining “orientation to persons” (that is, of the other people around the patient) as part of the patient’s broader awareness of his or her situation, which then got lost in English translation as “orientation to person”—as in, knowledge of one’s own identity and name. But then I got to this shocker at the end:

We advocate that orientation to person (self and own name) and orientation to persons (others and situation) both be assessed in the neurologic examination of mental status. [my emphasis]

What a cop-out! My alternative suggestion: if a component of your examination has no localizing or other diagnostic value, and if reporting that finding communicates nothing about the patient besides the naivete or insincerity of his or her doctor, and if we only got started with this silly practice from a historical and linguistic mistake... maybe you should stop doing it and use your precious examination time for something more useful? And teach your students and other trainees to do the same?

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Monday, December 14, 2015

Physician as Healer or Harmer? The Ethical Context of Aid in Dying

by: Elizabeth Dzeng, @LizDzeng

 As ethicists like to point out, what is the law is not always ethical and what is ethical is not always the law. Passage of the End of Life Options Act in California does not imply that we’ve resolved the debate on aid in dying, nor should it define our moral stance.

 However, it does provide us with new opportunities to find common ground. The energy and passion that motivate advocates on both sides, have always been rooted in the same desire to improve the way we die. The perspectives of those who oppose aid in dying will be especially critical, to give voice to vulnerable individuals for whom we must insure ethical responses with proper safeguards and support systems in place. This is an opportunity for us to critically evaluate and rethink our approach to improving end of life care as a whole.

 Aid in dying is controversial precisely because it exemplifies the many ethical dilemmas our society has grappled with – concerns of injustices that predominantly affect the poor, the need to protect vulnerable populations, and the tensions between patient choice and control, versus the role of the physician as a healer. Indeed, aid in dying is controversial because questions physicians’ fundamental professional identity as a healer. The American health care system is geared towards healing people when something can be fixed - and does a very good job of it. The problem is that this healer ethos falls apart when the patient can no longer be physically healed. We don’t do a great job of helping patients die peacefully, in part because clinicians are often uncomfortable when they can no longer heal. Medical culture too often sees death as a failure and physicians find it challenging to discuss death.

 Aid in dying also forces us to confront a professional code to first do no harm. However, lines have already been blurred between the Hippocratic Oath’s mandate and the potential for harm in the treatments we provide at the end of life. A recent study for example, demonstrated that chemotherapy does not confer survival benefit nor improves quality of life near death, and even more alarming, worsens quality of life for those with a high performance status. Atul Gawande, Sharon Kaufmann, and others remind us that medicine’s technological imperative and other structural incentives drive us towards interventions that do not help, and frequently harm. And Katy Butler eloquently reminds us of the havoc the process plays on caregivers who support the dying.

 The calls for legalizing aid in dying thus reflect our broader concerns about medicine’s failure to facilitate a good death. As such, a successful, ethical response must also shine a light on how we generally care for the dying. To start, we must broaden our understanding of what healing means, and recognize that even when the physical cannot be healed, that we must still play a role in the psychosocial, spiritual, and holistic healing needed to prepare for death.

This blog is an extended version of the introduction to the ethics panel at the End of Life Options Act Response Conference
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Thursday, December 10, 2015

A Palliative Care Fellow’s Perspective on Physician-Assisted Death

by Danny Cox (@DannyMD)

I’ll be honest. When I started my fellowship in palliative care 4 short months ago, I had not seriously considered the possibility that one day I would have a patient ask me whether I would prescribe them a medication to end their life. Of course I was aware of the Oregon experience, but living in California where I completed both medical school and residency had sufficiently inured me to this idea. But with the signing into law in California last month of the End of Life Option Act, I have started to feel troubled by this question: would I or would I not prescribe?

I recently spoke with my old babysitter who cared for me early on in childhood, a wonderful elderly Honduran woman now living in Maryland who I had not spoken with in over a decade. When I updated her on my career plans in palliative care, assuming she would have no context, I was surprised to hear her quickly respond about a recently watched TV program about doctors helping terminally ill patients die in Europe and Oregon. In clinic last week, when I asked a new patient what his plans would be if his health were to deteriorate from his metastatic cancer, he said, “Oh, that new physician-assisted suicide law.” I have already had 5 patients ask me for information on physician-assisted death in California. Anecdotally, people are talking about this new law and they are associating it with palliative care.

As a new face in palliative care, I have found myself deeply affected by these initial requests for more information about assistance with death. But what I have noticed in the field is that before this law was in place, we were comfortable looking the other way, as there were many issues that were considered a bigger priority. And I have also sensed a real unease with physician-assisted death. As I’ve come to understand, many palliative care practitioners have been afraid that any association with this law would further cement the misconception that palliative care is only about death -- even as the field has fought so hard to change its image in the national conscience as a focus on life and living well at any stage of a serious illness. With our aging population and higher burden of chronic diseases, the need for palliative care has never been greater, and yet we have all had patients decline our services because of the death stigma. As one palliative care MD I spoke with put it, “We are already thought of as the death squad. If we start prescribing a lethal pill, will we be?” In Oregon, only 0.3% of people that die are utilizing physician-assisted death. Another worry is that we have expended a significant amount of political will on an end-of-life option for the [less than] 1% when there is still so much need to expand inpatient and outpatient palliative care services for the 99%.

I haven’t even addressed the myriad of ethical issues imbedded in the implementation of the law. But that’s just it. Whether or not it is good for the field, no matter what our ethical beliefs, the passage of the law has changed things. There has been this sudden shift that we can no longer ignore. Patients will continue to turn to us because we are experts in end-of-life care, and this is now an end-of-life option.

For many reasons, from Brittany Maynard to our deep-seated cultural fear of death, physician-assisted death has captured the public imagination. As palliative care practitioners, we should leverage the interest that has been piqued by this law to explore our patients’ and communities’ hopes and fears of the dying process and shape the message of palliative care’s core intent. We must take a leadership role in the law’s implementation, building expertise on how to answer these difficult questions from the most vulnerable patients. We must make certain that pathways exist for us to step in and fill the void when other providers are uncomfortable proceeding. And we must ensure that the law is practiced safely, so that patients who are struggling with mental health disorders are appropriately referred.

As a recent GeriPal post by Dr. Petrillo eloquently stated, “the vast majority of people will actually achieve a better quality of life through supportive care, and will not persist in their request for hastened death once their needs are met.” I believe that if we provide accessible, high-quality palliative care focused on meeting medical, spiritual, and psychosocial needs, physician-assisted death will remain an option of last resort for our patients here in California.

If Oregon’s statistics bear out, I expect roughly 1 in 300 of my future patients to pursue physician-assisted death. Notably, in Oregon, 93% of those who died after ingesting a lethal dose of medication were already enrolled in hospice, presumably receiving adequate palliative care. Which is to say that there will be those very rare cases for whom palliative care at the end of life will not be sufficient. I acknowledge this, even as I strive to meet the needs and alleviate of the suffering of all my patients with the help of my palliative care team. And for all of my patients, I do sincerely hope that this new end-of-life option affords them some peace of mind.

So what about me. Will I prescribe? I won’t know until I meet that 1 in 300 patient. But what I do know is that no matter what my personal beliefs, as a palliative care clinician I will have to play a vital role in the care of that patient, facing her questions and concerns with compassion and expertise.

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Wednesday, December 9, 2015

The Invisible Hand Reaches into the Exam Room: Ordinary Medicine by Sharon Kaufman (Review)

by: Alex Smith, @alexsmithMD

Alone in the room with your patient, you think you have control over what happens?  You think that it's you and the patient setting the terms and content of what tests and treatments are offered, negotiated, and agreed to?

Think again.

In a brilliant new book, Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line, the medical anthropologist Sharon Kaufman illuminates the role of larger forces in shaping what is discussed in clinic examination rooms, at bedsides, and in consultation.  We had the pleasure of hosting Sharon Kauffman for our fist ever UCSF Division of Geriatrics Book Club yesterday.

Her book took me back to my freshman Introductory Sociology Class at Michigan.  I remember hearing about the "invisible hand" of larger social forces that, without our intention, guide our actions.

Here are two compelling examples from her book of how larger social forces are shaping conversations between patients and clinicians:

  1. The rise of the Medical Industrial Complex.  In 1980, pharmaceutical and device funding accounted for 32% of medical research funding, now it's 65%.  That's a huge shift.  As we in medicine all pretty much bow down at the alter of Evidence Based Medicine, the evidence we rely on is increasingly set by industry, big pharma, and device manufacturers.  This has played out, for example, in ever expanding criteria for Implantable Cardiac Defibrillators (ICDs).  ICD's are now being put into people in their 80s and 90s, into people who have never had a symptomatic arrhythmia, because doctors feel that if the evidence is there, they have to offer it.
  2. Once Medicare approves it, it immediately becomes standard of care.  Doctors now feel that they have an obligation to address Medicare approved treatments.  These forces are not just influencing doctors, who feel compelled to offer and discuss Medicare approved tests treatments they would not recommend, as Sharon Kaufman notes in her book.  As we discussed in our book group, patients now search the internet and request these tests and treatments.  I have an oncology friend who says, "My patients all want a the latest scan or genetic test.  In most cases, it won't change my management.  I tell them that.  They say, "Will my insurance pay for it?  Then I want it."  Kaufman describes this as the "more is better" approach in medicine.  My oncologist friend describes it as a patient approach to value-based health care: "I want all the tests and treatments my insurance will pay for."  
So you think you have control over what you talk about with a patient?  Think again.  You're not alone with your patient in that exam room - there's an invisible hand reaching in and guiding your conversation. 

The hard part about these larger social forces is that it's very hard to recognize them in your every day practice.  It takes an outsider looking at the system with an anthropologists eyes to recognize what a strange system we work in, that the rules are rigged, and that health, well-being, and improved quality of life are hardly the goals and outcomes our health care system is designed to promote.  

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Thursday, December 3, 2015

Use and Misuse of Chemotherapy at the End of Life

by: Danny Cox (@dannyMD)

The goal of palliative chemotherapy for patients with terminal cancer is to prolong survival and improve quality of life. A major ongoing concern among many physicians is that chemotherapy given to those near the end of life might actually be doing more harm than good. The 2012 American Society of Clinical Oncology guidelines recommend against the use of chemotherapy for those with an ECOG score of ≥3 (ECOG is a graded scale of functional status; see table). The implicit assumption is that those with better functional status will be better able to tolerate chemotherapy and derive benefit.
An eye-opening new study entitled “Chemotherapy Use, Performance Status, and Quality of Life,” recently published by Prigerson et al. in the September 2015 edition of JAMA Oncology casts doubt on the perceived benefits of chemotherapy in terminally ill cancer patients even with good functional status and highlights the need for a more nuanced approach.

In this multi-center, longitudinal cohort study, 312 patients with progressive metastatic cancer with a life expectancy of ≤6 months with failure of at least 1 prior chemotherapy regimen were enrolled and followed prospectively until death. Significantly, half of these terminally ill cancer patients (50.6%) were receiving chemotherapy when enrolled in this study at a median of 4 months before death. And here’s the kicker: patients with good performance status at baseline (EGOG = 1), i.e. those most likely to “benefit” from chemotherapy, had worse QOL near death than those who did not receive chemotherapy. Patients with poorer performance status (ECOG ≥2) did not derive a QOL benefit from chemotherapy. Moreover, there was no survival benefit to chemotherapy in this study population.

So why is this happening? Why are our sickest cancer patients receiving toxic chemotherapeutics near the end of life when common sense, and now this new evidence, would dictate that there is limited benefit and even harm? One reason is that a physician, when faced with a patient in a terrible situation who is desperate to live, feels compelled to offer hope, to do something. It may be easier to write the next chemo order that the patient is requesting than to have a very difficult conversation acknowledging that a patient’s prognosis is limited and the treatments that have been tried have not worked.

Given this new evidence, physicians must have more candid conversations with their patients about the limited benefits and real risks of chemotherapy in terminal cancer. This way, patients and their families can make informed decisions about what is likely to happen rather than what they hope will happen. Medical education and professional development need to fill the gaps in communication skills to train our current and future oncologists to have these compassionate, courageous, and informative conversations. And together with their palliative care colleagues, oncologists must be armed with more tools in their proverbial tool belts like symptom relief and psychosocial support so that they can meaningfully offer something at that critical juncture when their terminally ill patient is crying for help and chemotherapy will not be effective.

A final take-away question introduced by this study: should tumor shrinkage or patient experience be the primary endpoint by which we judge the efficacy of any chemotherapeutic? Currently, most chemotherapy drug trials look at end-points like tumor size and time to progression of disease. Almost none examine QOL. The problem with the current end-point analysis paradigm is that you can make a tumor smaller, but the patient might not feel any better.

In fact, they sometimes feel worse.

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Thursday, November 5, 2015

An Update from the Hill: Advancing the Palliative Care and Hospice Education and Training Act (PCHETA)

Washington D.C. was an exciting place at the end of October. Sure there was a whirlwind deal to shore up the budget and avoid a crisis over the next two years.  And there was the resignation of Speaker Boehner and election of Speaker Ryan. But more importantly, AAHPM was in town to discuss the Palliative Care and Hospice Education and Training Act or PCHETA.

The take home from AAHPM fly-in is this:  Just as the construction on the Capital Dome is slow going but advancing, PCHETA is moving forward.  Progress is being made and we have MOMENTUM. Participants described constituent meetings with legislators and their staff as productive.  The legislature knows more and more about PCHETA and understands the issues better.

The PCHETA bill was first described on GeriPal in 2012. For those who think, "why is this important bill not already law"  it is important to recognize that a lot of good work has happened.

1. The PCHETA bill of 2015, which was introduced by Representatives Engel (D-NY) and Reed (R-NY) in the House as HR 3119 is a better bill.
In addition to the key provisions such as Palliative Care and Hospice Education Centers, Academic Career Awards, and Career Incentive Awards described in GeriPal's previous post, the new bill includes:
  • Improved federal supported research in palliative care
  • Training for more non-physician providers with special preferences for nursing education in palliative care in existing training programs
  • A national palliative care public education and awareness campaign

2. The PCHETA bill has more support than ever.
In 2015 the American Cancer Society- Cancer Action Network added it's support to the bill and The Patient Quality of Life Coalition advocated for the bill during its advocacy day this July and went on to begin its first ever ad campaign in support of PCHETA.  Over 30 key health care organizations support PCHETA including the American Academy of Hospice and Palliative Medicine, the American Geriatrics Society, the American Cancer Society's Cancer Action Network, the Hospice and Palliative Nurses Association, the National Hospice and Palliative Care Organization and many more.

3.  The PCHETA bill has bipartisan legislative support.
This is not a one-party bill.  This bill is important for patients with serious illness throughout the US.  Here is a chance for legislators to work together across the aisle.  Several members described their personal experiences with loved ones who were ill.

Watch for the bill to be introduced soon in the Senate.  When that happens, it is time for you to act.  Make your voice heard and advocate for better hospice and palliative care education and research as well as adequate workforce to meet the needs of an aging population with chronic illness.

by: Paul Tatum
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Monday, November 2, 2015

Recognizing the Incurable in Ancient Egypt

by Jeffrey M Levine MD

The art of medicine is as old as human civilization, and what we think is new has often been done before. When researching the history of wound care I came across an interesting historical antecedent to today’s palliative care practices. I found it in the library of the New York Academy of Medicine in Manhattan, in a translation of an ancient Egyptian medical scroll, the Smith Papyrus, pictured above.

During the American Civil War, an Egyptologist named Edwin Smith acquired the scroll and brought it to the United States where it subsequently found a home at the Academy on Fifth Avenue. The document is roughly fifteen feet long and three feet wide, and has writing on both the front and back. The scroll is made of papyrus, an ancient form of paper made from fibers of a plant native to the Nile region. Written with a reed pen, the text is a simplified form of Egyptian writing known as hieratics. The script differs from formal hieroglyphics which were more complex and painstaking to write. Documents reflecting daily mundane affairs were recorded in hieratic script, whereas temples, monuments, and official documents were written in the more readily recognizable hieroglyphics.

Tradition holds that information in the Smith Papyrus was passed down from the time of the Pyramids, nearly 5000 years ago. The original author might have been Imhotep, high priest to the sun god Ra and medical advisor to the pharaohs, and the earliest physician in human history whose name we know. Throughout ancient Egyptian civilization, Imhotep was viewed as a god who obtained his knowledge of medicine directly from the heavens. The Papyrus contains 48 clinical case presentations, each reflecting traumatic injury or other pathologic lesion. The cases are organized anatomically according to location, and many of the cases are devoted to wounds of the skin. Others include tumors or ulcers, and injuries to bones and joints.

Ancient Egyptian physicians were surprisingly sophisticated. For example, they recognized that the brain controlled bodily movement, with injury to one side of the brain leading to weakness of extremities of the opposite side. Physicians also realized the importance of examining the heart and pulse when determining the extent and nature of a disease and injury. What surprised me was a system where the physician determined which patients to treat and which were hopelessly ill and did not merit curative treatment.

Each case in the Smith Papyrus contains physical observations of the disease or injury followed by a diagnosis, and a prognosis which determined the level of treatment offered. James Henry Breasted, the first translator of the document, called this prognosis the “verdict.” There were three possible verdicts rendered by the Egyptian physician, the most favorable was a lesion or disease that can be treated and most likely cured. The next and more serious verdict determined that the injury or disease can be treated but may not be cured. Finally, there was the verdict of a hopeless prognosis, where curative treatment was not offered.

Medicine today is quickly evolving, and there are lessons to be learned from the ancient Egyptians. First, the physician has been dethroned from the godlike status they once held. The days in which sacred information was passed down into the hands of a select few are over, as medical knowledge is available to anyone with a handheld device. The scientific knowledge and values transmitted by mass media have formed a culture whereby sickness, aging and death are lifestyle choices rather than natural components of human existence. Many caregivers, though equipped with the knowledge to recognize medical futility, are either untrained or unwilling to have the difficult conversation with patients and families explaining that curative treatment will not work.

Part of the physician’s role in ancient Egypt was to recognize medical futility and act accordingly. How different this is in today’s society, where illness and death are often viewed as failures of the medical system. A recent report by the Institute of Medicine underscored the “perverse financial incentives” that deter implementation of humanistic end-of-life principles and encourage costly heroics that may incur additional suffering. Palliative care means facing the facts and offering alternatives that may not be in accordance with cultural preconceptions. Part of the solution recommended by the IOM is introducing palliative care early in the medical curriculum, impressing upon young doctors the importance of not only recognizing, but making appropriate decisions when cure is not the goal – much like the practice of physicians in ancient Egypt.

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Reference for this post was: Levine JM. Wound care in the 21st century: Lessons from ancient Egypt. J Am Med Dir Assoc 2000; 1: 224-227.

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