Monday, September 19, 2016

Dying to be heard





In the notes of the three nephrologists who had seen Carlos Garcia in the weeks before me, I read about how they had spent considerable time telling him about dialysis and how they recommended that he start dialysis as soon as possible or he would soon die. I read how they had spent even more time trying to get him to agree to do it after he had adamantly refused time and time again. I didn’t want to repeat what they did. But I needed to make sure he was sure.

He was only 63.

“Sometimes people refuse dialysis because they think it does things that it really doesn’t. Can you tell me what you think dialysis would be like so I can be sure your decision is based on the reality?”

He exhaled and hung his head with the disappointment of here we go again. He flung up his arms and shook his head as he spoke, showing me his sunken temples from different angles.

“You have to be connected to a machine for almost the whole day almost every day.”

“Well, not exactly. Hemodialysis is only about 3 hours and 3 times a week,” I said in that way we doctors often do when we want to downplay what’s bad about the pill or procedure or surgery we think the patient in front of us should have in order to get the good from it. “And it would extend your life. It would give you years. Without it, you will die within the next few weeks, a few months at the most.”

“I don’t want to live my life like that. Connected to anything,” he returned.

Though the words seemed to ooze from his lips from a brain bathed in the toxins of severe kidney failure, I could sense that he was an intelligent man. One who had given a lot of thought to his life and how he wanted to go through the world. He was speaking from a place of certainty, not fear.

“OK. I hear you,” I said, nodding, accepting. “I will support you in your decision. I think the thing to do now is to refer you to hospice. They can provide additional support in your home.”

He exhaled and hung his head again, but this time with the relief that comes from feeling heard. He nodded in agreement and I went on to describe what he could expect with dying from kidney failure and what we could do to ease any symptoms as they arose.

And then his friend, who had been sitting silently beside him, her bright blue eyes wide with all the words she seemed to be trying not to say, finally spoke. “Can we see you next time we come back to clinic?”


by: Vanessa Grubbs, MD, MPH is an Assistant Professor in the Division of Nephrology at UCSF and maintains a clinical practice at Zuckerberg San Francisco General Hospital. Her primary interests are renal palliative care and narrative writing. Her research focuses on treatment alternatives for the frail elderly with end-stage kidney disease. She teaches writing for patient advocacy to medical students and practicing physicians, blogs at thenephrologist.com, and is working on her first book, which will be released in Summer 2017 through Harper Collins Publishers, Amistad division. You can follow Vanessa on Twitter @thenephrologist

Note: Identifying details of this story have been changed to protect patient confidentiality.
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Tuesday, September 13, 2016

An Interview with Roz Chast - Author of Can’t We Talk About Something More Pleasant?


by:  Jeffrey M. Levine MD, AGSF

I had a chance to interview Roz Chast, the New Yorker cartoonist and best selling author of Can’t We Talk About Something More Pleasant?  This bestselling graphic memoir is quite unique as it deals honestly with personal and emotional issues of caregiving for aging parents, and on the way covers many issues that geriatricians and palliative care specialists deal with on a regular basis.   It is also now available in paperback.

Jeffrey:   You are an artist known for your cartoons for New Yorker magazine, as well as your books that bring out the humor in everyday life.  I am a fan of yours and it’s a pleasure to have this assignment from the Geriatrics and Palliative Care blog to ask you questions about your book.

Let’s talk about the title of your book.  The title underscores a basic issue that geriatricians deal with on a regular basis – that is how to get an elderly person to face the difficult conversations of end-of-life choices.  When you wrote this book did you expect that your graphic novel would have such wide application for so much of our aging population?

Roz:  I didn’t think about that. I had no idea how or if it would apply to anyone else. I wrote it mainly for myself—so that I would remember them, and also the process of dealing with their final ten years or so, in greater detail than had I not written stuff down.

Jeffrey:  You write with acerbic wit and at times hostility about doctors and hospitals. Your mother for example said that doctors have a “god complex” and hospitals are a place to die.  You relate a harrowing anecdote about accompanying your parents on an ER visit with discourteous staff and endless waits.  Do you think the average doctor, and our medical system, is prepared to deal with the problems of old age?

Roz: No, I don’t.  We don’t deal with death in this society. We pretend it doesn’t exist. Crank up the Muzak and spray the whole topic with room freshener.   I really hope that by the time I get “up there,” IF I get “up there,” there are better ways of dealing with what happens in those closing chapters. More help for the caretakers, should we be lucky enough to have them. And no weirdly-themed, infantilizing dinners in old-age facilities. I didn’t invent that detail in my book about the “Outer Space” themed dinner at the assisted living place my parents  were in. So demeaning and depressing.

Jeffrey: You take the reader through placing your parents in assisted living, obtaining a home attendant, and placement in a nursing home.  You describe a facility for the aged in Brooklyn as “depressing, torn carpet, dirty, flaking walls…” etc. As a geriatrician in the New York Metro area I know that places like this exist.  There are also clean and well run places.  What do you think society should do to improve conditions in our institutions for the aged?

Roz: I’m not a politician, a sociologist, an economist, or a geriatrician. All I know is that our society is organized to reward the top one percent of the top one percent with insane amounts of money. So, at the risk of sounding like a Socialist, I wish that somehow, we could all agree that this is nuts, and we have to spread the money around a little more equally. My parents saved up for their old age and were lucky enough to be in a non-disgusting facility.  I don’t know what happens to people who didn’t.

Jeffrey: Your description of the aging process is achingly funny but startling accurate.  Did you do any research on aging for your book apart from what you learned in the caring process?

Roz: None whatsoever. None needed. I had two textbook examples right in front of me, like anyone else who is taking care of a person or people who live to a very old age.

Jeffrey: Some of the things you write about, for example debridement of painful bedsores, a mass in your father’s chest, and a fistula in your mother’s abdomen are discussed in the context of palliative decision making but without directly using the term.  You describe for example your own doubts on whether surgery is a humane idea if there was additional pain and poor choice of survival.  As we progress in this century palliative care is becoming more common but my guess is that you did not encounter palliative care specialists when you cared for your parents.   Do you think that a better presentation of palliative care principles through a specialist would have helped you and your parents through the process?

Roz:  I think as palliative care becomes more normalized, it will be better for everyone. If my own final chapter involves palliative care , I am hoping to have access to psychotropic drugs. I might change my mind when the time comes, but I think about this a lot. Seriously, why not use the time to do some exploration of consciousness? I think there’s research being done on this topic—whether certain drugs like LSD, given  in controlled doses and situations, can help people deal with the dying process.

-------

Jeff Levine is Associate Professor of Geriatrics and Palliative Care at the Icahn School of Medicine at Mount Sinai in Manhattan, and sees patients at the Center for Advanced Wound Care at the Mount Sinai Beth Israel Medical Center.  Read his review of this book at: http://www.geripal.org/2015/05/insights-into-geriatrics-by-cartoonist.html 

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Thursday, September 8, 2016

What is your front desk saying about palliative care?









by: Alex Smith, @AlexSmithMD


Do you know what the operator or person at the front desk is saying about palliative care?  When people call, saying the want palliative care, how are they responding?


A study being presented in abstract form at the palliative care and oncology research symposium addresses this simple but critical question. 


Researchers at Duke (Kathryn Hutchins, 3rd year medical student first author, Arif Kamal, oncopal researcher, senior author) cold called 40 major comprehensive cancer centers.  They used a "mystery shopper" approach.  They pretended to be a family member of a recently diagnosed inoperable liver cancer patient asking about palliative care services.  All 40 major comprehensive cancer centers report having palliative care services.  Here's what they found:
  • When asked straight up if they offer palliative care services, 10% gave an answer other than yes, including palliative services are for the end-of-life only or being unsure of what the term "palliative" meant.
  • Less than half of all callers were told that all elements of palliative and support services they asked about were offered.
  • Where were they actually referred after a "yes" [we offer palliative care] response?  Callers were most commonly referred to patient navigation and genetic assessment services.
I love this study, because it's a "rubber meets the road" sort of study.  As in, the rubber meets the road when someone actually calls to get a palliative care appointment and can't.  I also love it because it was not funded.  And because it was led by a medical student, and should serve as an inspiration to medical students nationally about what can be accomplished with a limited budget, skills, and time.


After reading the abstract, I tried to argue with another palliative care doc that most people don't get referred to palliative care by calling up and asking for the service. They get a referral to palliative care from their oncologist.  His response was, "maybe they are tying to call, and you never find out about it."  Touché.


So I tried it out.  I called our hospital on my cell phone and asked if they have palliative care services. 


The operator said, "what?"  I asked again.  A long silence.  Then my phone dropped the call (wifi calling is not ready for prime time). 


So I called back apologized for the disconnect, and asked again, "do you have a palliative care service?"


The operator said, "Yes, we do.  We don't get many requests for that.  Let me look it up.  OK, here it is, I'll connect you."


The phone rang.  It went to voicemail.


"Hi this is Caitlin Willham, I'm not in the office, please leave a message."


That's funny, because Caitlin is a geriatrics fellow, her office is right next to mine, and she is not part of the palliative care team.


Ooops.


Do you know what your front desk is saying about palliative care?  Call them.  You might be surprised.
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Wednesday, September 7, 2016

One Step Closer: Palliative Care and Hospice Education and Training Act (PCHETA)


by Paul Tatum (@doctatum)

This Labor Day weekend it is time to feel grateful for the politicians in Washington DC who are working together to improve health care.   The entire palliative care community should send a giant note of thank you to the members of the House Energy and Commerce Subcommittee on Health.  The Subcommittee on Health has scheduled the Palliative Care and Hospice Education and Training Act (PCHETA), House bill H.R. 3119, for a legislative hearing on Thursday, September 8, 2016 as part of a hearing entitled “Examining Legislation to Improve Public Health.”

PCHETA is a bipartisan bill which has broad support from both patient and provider organizations.  Forty-four separate organizations signed a letter from the Patient Quality of Life Coalition requesting a hearing for PCHETA. While PCHETA by now is well-known to regular readers of Geripal, the bill has had some improvements added from prior years.  If you don’t read the complete bill in the link above (the Senate companion bill is Senate bill S. 2748,) you can read more in detail about the bill here in the AAHPM summary (and please do read the summary if you have not). In short, the House Bill H.R. 3119 has three components:

  1. Education - expanded opportunities for interdisciplinary education in palliative care,  
  2. Awareness - an awareness campaign to inform patients and health care providers about the available services and benefits of palliative care, and 
  3. Research - strategic planning within the National Institute of Health (NIH) to expand palliative care research.


PCHETA fits the focus of this hearing, “Examining Legislation to Improve Public Health,” very well.  PCHETA really does improve public health because palliative care is really about caring for those with serious illness and their caregivers in ways that improve quality beyond what the traditional medical system has offered.

So a big thanks to the Health Subcommittee for bringing PCHETA into this hearing.   I hope that this will lead to advancing the bill to the full committee level and eventually to full consideration in the House. This is a good bill that improves public health and patient care.

And thanks to the palliative medicine community (including AAHPM, CAPC, HPNA, NHCPO, SWPN, and YOU)  for coming together from various professional disciplines to advocate for the cause of patients with serious illness in partnership with groups like American Cancer Society, the Alzheimer’s Association, the American Geriatrics Society and so many other groups to better the care of our sickest patients.  We do this for the health of society.

And if you just happen to live in a district with a House member on the Energy and Commerce Subcommittee on Health (check here), why don’t you give their office a call (or Facebook message or tweet—use #SubHealth) and continue to ask them to support PCHETA.  Also, if your district’s member is already one of PCHETAs cosponsors (check here), reach out and send a big thanks for their ongoing support!

If you’re not sure who your legislators are, visit AAHPM’s Legislative Action Center and just enter your zip code to find your legislators’ names, numbers email addresses, twitter handles, Facebook addresses, and more.  Remember to check both your work and home zip codes.

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Friday, September 2, 2016

Round-up of physician aid in dying news in California



By: Laura Petrillo, @lpetrillz

The End of Life Option Act has been in effect in California for almost three months.  How is it going so far?

In the news, there have been a few publicized cases. First, the death of a young woman with ALS in Ojai, California fit perfectly with the romanticized image of an intimate goodbye among friends and family, followed by the sip of a potion and a long, gentle sleep.  The most common sentiment I heard from people was “You have to admit that was lovely,” yet the media coverage led me to wonder whether the rules of reporting on suicide (avoiding sensationalism to deter copycats) apply here— apparently not.  

Other stories were less rosy. Another woman with ALS in southern California struggled to find anyone to write a prescription, and when she finally obtained the medication, her death was a frenzy that involved an urgent ferry from the pharmacy via Uber and a rushed crushing of pills in a race against her symptoms. The woman’s niece wrote, “It didn't exactly match the serene scenario I'd pictured—with appropriate music, Bible readings, and meaningful conversation… My aunt was surrounded with love, but the day was fraught and frightening.” 

Healthcare systems around the state that have chosen to participate in the law are having varied experiences. The Compassion and Choices director Matt Whitaker praised California’s response so far, saying, “California is ahead of the pace, in terms of access. Many of the struggles Oregon had have not materialized, because health systems have stepped up to make sure their physicians are educated and there are structures in place for patients.”  He may have been talking about Kaiser Permanente, which did extensive training in advance of the law in order to operate like a well-oiled machine from day one. Kaiser spokeswoman Amy Thoma said, “With every person who wishes to exercise their right, we will have a patient coordinator to guide the patient through every step.” 

Many healthcare systems are still scrambling to create policies, though, and in some cases, dealing with dissent among the ranks. Physicians at Huntington Hospital, in Pasadena, decided “behind closed doors” to opt out of the law at first, but their decision was overruled by the hospital board, who decided to allow physician aid in dying in the hospital. Physicians will still have the right to opt out individually, as guaranteed by the law. 

The other big news item is that a group of physicians and the American Academy of Medical Ethics has filed a lawsuit seeking to overturn the law. A Riverside County judged ruled against an injunction to suspend the law until the case was decided, but allowed the case to move forward.

So Geripal readers in California, I’m curious. How’s it going where you practice?  Please feel free to use the anonymous feature on the comments section to sound off!




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Thursday, August 11, 2016

Inappropriate Prescribing of Transdermal Fentanyl in Opioid Naïve Nursing Home Residents



by: Eric Widera (@ewidera)

If you had to guess what long acting opioid is most commonly started on in nursing home patients, which one would you guess?    A new study released last week in JAGS shocked me.   The answer to this question was a fentanyl patch.   Even more shocking, many of those started on this medication were never prescribed any opioids prior to being started on a patch.  

Ok, before I get ahead of myself, let me describe the study.   The authors used nursing home data from 22,253 Medicare-enrolled long-stay residents (meaning that they had to have a stay of greater than 90 days).  They combined the Minimum Data Set (MDS) with Medicare enrollment, hospital claims, and prescription drug transaction data from January to December of 2011 to determine the prevalence of new initiation of a long-acting opioid prescriptions.   They excluded residents who were comatose, who did not initiate a long-acting opioid after nursing home admission, or who had less than 3 months of continuous enrollment in Medicare Part D before initiation of a long-acting opioid.

What they found was eye opening:

  • One out of ten nursing home residents (9%) were never on a short acting agent in the previous 60 days prior to starting a long acting opioid.   
  • The most-common initial long-acting opioids was a fentanyl patch, accounting for about half of all long acting opioids for both opioid-naïve and non-naïve patients. 
  • For those opioid-naïve patients put on fentanyl patches, 27% were placed on a 12 mcg/h patch.   38% were placed on a 25mcg/h patch, and the rest were placed on 50mcg/h or more of a patch.   

I have some worry about a blanket statement against the use of long acting opioids without starting a short acting agent first, I do feel that starting a fentanyl patch in an opioid naïve patient is dangerous.   My only hope is that the study didn't capture opioid prescriptions that were outside of the Medicare Part D benefit, which is possible but unlikely to account for all of their findings.


Reference

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Monday, August 1, 2016

There Is No Glamorous Pink Ribbon Here: A Reflection on Death and Life


by: Bridget Blitz, LCSW, ACHP-SW

Her name was Faith, at least for the purposes of this reflection.  The night before she died, Faith knew that she was going to die and told the hospital nurses that she was would be dying soon.  She was able to articulate her needs, see her family and quietly die the next morning.  In her mid-fifties, Faith encountered a long journey with breast cancer that lead to metastasis in other areas of her body, including her bones.  Long before the hospitalization, Faith cried while anticipating a bad result from an MRI that turned out to be more positive than negative at that time with little progression of her cancer.   She had an uneven course after that with more illness progression.  Unfortunately, her disease proved to be quite strong and deadly.

Our society seemed to ignore and then to glamorize breast cancer.  Pink ribbons, moving stories of beautiful, bald young women with small children and fund-raising walks do not capture the full extent of life and death with cancer.  They do not explain the loneliness of living with children and other family members who are struggling to take care of themselves and too heavily depend upon their once steady mother and grandmother who is now too tired to cook, work, or take care of her home.  They do not explain the sudden stopping of gainful employment and good paychecks that are replaced by Social Security Disability in the amount of roughly $900 a month, which cannot begin to hold back the foreclosure that is pounding on her mind.  They do not illustrate the vomiting, hair loss, fatigue, tingling and numbness in the extremities or depression that come related to chemotherapy and radiation.

What can possibly help in this world of pain, loss, poverty and impending death?  Tending to symptoms and side-effects, a hug, resources to advocate such as a pro bono attorney with experience in foreclosures, applying for grants, prayer, outreach phone calls, collaboration with the team members who are also feeling helpless, hearing that the oncology team bought anonymous holiday gifts for a patient, listening to a daughter’s anger as she railed against the medical team whose members operated and she believes, made things worse.   Telling the EMS staff who said “your doctor must be the Candy Man” in response to seeing a list of pain medications and a too-somnolent patient that this patient has stage four breast cancer with metastases all over her body.  Wishing my hands would not shake on the computer as I tried to pull up her medication list because I had found her almost unresponsive.  Wishing to ask the young, seemingly healthy EMS staff how he would feel if his bones were full of cancer, if he had to wear oxygen, if he were going to lose his home for the crime of getting cancer and if he were facing his own death.  I was too distracted at the time to strongly challenge him but he should know that this woman is not simply an poor woman who lives in a home with challenges but that she provided strong advocacy for many people in her job, that she is the head of a large family, that she adores her pets, that she worked 70 hour weeks before becoming ill, that she is afraid to die, that she loved to laugh, that she matters.      

Many of our patients need at least $40,000 to help them catch up on past-due rent and mortgages; electric, gas and water bills and unpaid medical bills.  Some need much, much more.  Applying for financial assistance, food stamps, Medicaid, and cancer grants can help reduce some of the financial pain.

Sick days for those who have paid leave time and a steady home can be reassuring, as they snuggle into covers and make tea.  What about those whose sick days are every day, are unpaid, and involve a barrage of past-due bills, threats of homelessness, societal judgement, increased poverty and fear of death?  There is no glamorous pink ribbon here.    

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Thursday, July 28, 2016

The Ultimate "Palliative" Branded Products

by: Eric Widera (@ewidera)

The word "palliative" is popping up in a lot of unexpected places of late.  

Sometimes its used in combination with the word "care" but not in the traditional way we think of usual palliative care practice.  One just has to go back to Alex Smith’s post of a recent JAMA study on “palliative care” meetings in the ICU or Elizabeth Lindenberger's wonderful post in Pallimed about the same study.    Let’s just say that the term palliative care is used loosely in the discussion section of the manuscript and newspaper articles written about this study.

Another great example is brought to us by Drew Rosielle’s post in Pallimed on the term “Palliative Sedation”:
“Besides the ridiculously confusing nature of the phrase 'palliative sedation,' it's another example of the myriad ways in which 'palliative' is used: care-which-is-palliative, care-which-is-given-by-a-palliative-care-team, palliative pediatric cardiac surgeries, palliative chemo, used synonymously with 'comfort care', 'going palliative' etc etc. It just makes it worse for us to have the term pegged to this practice which, strictly defined, seems to happen very rarely in the US (deliberate, deep, continuous sedation), and reinforces an image of our care teams as people who just drug the hell out of patients.”

However, the best example of palliative care branding is this gem brought to us by good folks at Scarflok Council (for those who may not be in the know, it a town which is forever locked in the 1970s).   May I present to you #palliativetoys by SMS (no, not "Symptom Management Service", but rather "Scarfolk Medical Supplies"):





Do you have any other examples of "palliative" branded products (aside from the usual palliative chemo and palliative surgery) that you can share?



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Friday, July 22, 2016

Antipsychotics for chemotherapy induced nausea and vomiting



by: Eric Widera (@ewidera)

So yesterday I wrote about the rapid uptake of using antipsychotics for insomnia in the hospital setting and wondered “when did this become a thing?”   Today, I’ll like to talk about antipsychotics for nausea by first asking that same question.

When did antipsychotics for nausea become a thing?  A long time ago.  Haloperidol and other anti-dopaminergic agents like metaclopromide have a long history of use both in the hospice, palliative care, and oncology setting.  Now we have a little more evidence that at least one of these drugs, olanzapine, may help with the prevention of chemotherapy induced nausea and vomiting.

The Study

A double-blind, randomized control study published in the NEJM last week compared 10mg olanzapine with placebo for 4 days, in addition to usual care with dexamethasone, aprepitant or fosaprepitant, and a 5-HT3 receptor antagonist, in 380 patients with no previous chemotherapy who were receiving cisplatin or cyclophosphamide–doxorubicin (two highly emetic agents).  The primary outcome was nausea prevention.  Secondary outcomes including no emesis and no use of rescue medication.

What they found

Not shocking for those who have been doing this work for a while – adding an anti-dopenergic agent works.   The proportion of patients with no chemotherapy-induced nausea was significantly greater with olanzapine than with placebo for multiple time points:
  • 0 to 24 hours after chemotherapy: 74% vs. 45%
  • 25 to 120 hours after chemotherapy: 42% vs. 25%
  • Overall 120-hour period: 37% vs. 22%

The complete-response rate was also significantly increased with olanzapine compared to placebo during the three periods:
  • 0 to 24 hours after chemotherapy: 86% versus 65% 
  • 25 to 120 hours after chemotherapy: 67% versus 52% 
  • Overall 120-hour period: 64% versus 41%

The biggest adverse effect was sedation which was severe in 5% of patients at day 2, but nobody stopped the study because of sedation.

Take Home Point

While this is a study of a particular antipsychotic, olanzapine, one does have to wonder if there would have been similar findings if they used a tried and true hospice medication: haloperidol.  Nevertheless, it does serve as an important study addressing one of the most common symptoms we see in palliative care.


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Thursday, July 21, 2016

Antipsychotics for Sleep: When Did This Become a Thing?



by: Eric Widera (@ewidera)

Sleep.   It’s sometimes hard enough to get enough at home with all the distractions of daily life.   It’s only made more difficult in the hospital setting.

We’ve seen a lot of interventions to help with this that generally consist of pills, because as compared to changing the environment or culture of the hospital, as it’s an easy intervention.  However, most of these have little to no evidence that they work.

The latest one that I just saw in the hospital was prescriptions for quetiapine, an antipsychotic, for sleep.   I thought to myself, well that’s odd.   Hopefully this won’t become a thing.   I’m sad to say, just like Pokémon Go, it has.

A study came out last week in JAMA IM titled “Off-label Use of Quetiapine in Medical Inpatients and Postdischarge.”   The authors prospectively enrolled all inpatients 60 years or older between December of 2013 and April of 2015 from a teaching hospital in Quebec, Canada.

One of the authors then looked at all of the medical records for quetiapine prescriptions, dosing, and indication.    If they didn't have a comorbid psychiatric condition (eg, schizophrenia, major depressive, or bipolar affective disorder) or evidence of delirium it was assumed that they were receiving night time dosing of quetiapine for sleep.

What they found was shocking.   One out of every ten patients (13.0%) received quetiapine during hospitalization, 64.0% of which received the medication at bedtime for sleep.  That’s 8% of hospitalized patients getting quetiapine for sleep.   Most of these individuals were newly initiated on this antipsychotic in the hospital.   Sadly, 1 in 7 patients who first received quetiapine for sleep in the hospital was discharged home with at least a 1-month prescription.

Seriously.  Antipsychotics for sleep.  Really, is this the best we can do to help with sleep in the hospital?  If you want to read a good case of why this is just bad practice, take a look at the Teachable Moment case from that same JAMA IM issue.

Is this a thing at your hospital too?








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Wednesday, July 13, 2016

JAMA ICU Trial: Messaging, Information Toxicity, and The Simpsons



by: Alex Smith, @AlexSmithMD

There's been some terrific discussion about the ICU trial published in JAMA.  I'd like to share some of those reactions here for those who missed them.  For those of you who missed the original GeriPal perspective about the trial, click here.

The first is from the comments on the original post.  Sean Morrison, MD, director of the palliative care service at Mt. Sinai (one of the hospitals participating in the trial) gives his insider understanding of the intent and purpose of the trail: "this was not a palliative care intervention."




As the director of one of the palliative care programs that participated in this study, I thought it might be useful to add a few more comments to the discussion above.

I think it is important to understand the background to this study as we understood it at Mount Sinai. The purpose in conducting this study was to see whether a structured compassionate sharing of prognosis and likely outcomes to ICU families would assist in decision making and improve outcomes. At its inception, this trial was never designed to be a palliative care intervention. Palliative care clinicians were chosen to deliver the intervention because of their sophisticated communication skills.

I'm actually not surprised by the results. We know from our practice that discussing goals of care and assisting in decision making for critically ill patients is a complex, difficult, and time consuming process that typically requires the development of an ongoing and trusting relationship with both families and clinicians, repeated meetings, ongoing emotional and spiritual support, and time for the process to unfold. Further, it is not surprising that the abrupt "in and out" sharing of both prognosis and the likelihood of poor outcomes in the absence of this relationship-building process appears to have done more harm than good. Indeed, many of the clinicians who participated in the trial were uncomfortable with the intervention and noted that it was quite different than their routine practice.

If the authors had reported the negative results of a trial that used experts in communication (i.e., the palliative care team members) to examine whether one or two sessions devoted to sharing of prognosis and outcomes in a critically ill population was beneficial, I think that we all would agree that this was useful information, albeit perhaps not terribly surprising.

From my perspective, the main authors of this study made the inexplicable decision to describe this as a “palliative care” intervention. Let me be clear, this was not a palliative care intervention nor did our team consider it to be such. The intervention was a strictly delimited structured informational session delivered by palliative care providers who were given an intervention script and were accordingly restricted in what they could say and do by the design of the study.

Needless to say, the messaging of this article was misguided, inaccurate, potentially damaging to the field, and more importantly potentially damaging to critically ill patient and family access to palliative care.

Thanks for letting me weigh in.
Second, here are the perspectives of one of the world's finest communicators and teachers, Tony Back, MD (h/t to Angelo Valandes' twitter feed).  Tony's reflections are captured in video on Vital Talk , a terrific website/app/resource that if you haven't seen, you should check out right now by clicking the main page here.  Tony links the study to an issue we have all encountered in palliative care communication: information toxicity.  I love how he masterfully draws out teaching points for practicing clinicians from this study's findings.  Favorite line, "If you were an oncologist, you wouldn't give the next cycle of chemotherapy without checking the white count. We should treat information the same way."



Information toxicity from Vital Talk on Vimeo.

If you don't have access to the video or via the link to Vital Talk, then here is a transcript of his remarks (thanks to Sean Lang-Brown).
I've been hearing dismay and much consternation about the new negative study of palliative care in the intensive care unit, and here's my take on it.  We are slowly learning that information might have a downside. What the study investigators did was well intentioned. They added information meetings to routine ICU care. The information meetings were led by palliative care clinicians but they weren't done in conjunction with the ICU team, there was only 1.4 meetings per family and patient and the guide for doing the meetings has nothing at all about noticing family emotion or responding to it.
I think the study investigators were hoping that more information would help family members understand better and do better.  What the study showed however, is that the families who got the extra informational meetings in some ways did worse. They had more symptoms of post-traumatic distress.  
We clinicians tend to think of information like a kind of fertilizer, you know, "sprinkle it on there and awareness will blossom!" But when you're dealing with a family member who's exhausted, sleep deprived, and on the ICU roller coaster of experience, giving more information can tip people into an overwhelmed state, where they fall back on coping mechanisms that aren't their strongest.  Things like denial, suppression, projection. 
What do you do when you've hit information toxicity? The first thing is don't panic, you can still work your way out of it. But what you need to do is different than pushing through to the thing you think you need to finish. 
So, take a deep breath, pause, and say, "Let's take a minute here." Then, ask for a sample of their experience. Say something like, "You know what, could you just tell me what's going through your mind right now?"
Don't ask them for the decision, don't ask them to analyze things, don't try to put words in their mouth or even comment on their emotion. Ask them to just report. And if you get a little bit of freeze, flight or fright, it's really time for you to stop.
What you should think about then, is that by trying to pack in more information, by trying to be efficient, by trying to get the DNR, you're probably going to do harm.  You know, if you were an oncologist, you wouldn't give the next cycle of chemotherapy without checking the white count. We should treat information the same way.
And finally, from Facebook comments to GeriPal, we have this from Jerry Soucy, RN.
In-N-Out burgers are pretty good. 
These consults remind me of an early episode of the Simpson's ("One Fish, Two Fish, Blow Fish, Blue Fish."). Homer eats a platter of improperly prepared fugu at a sushi restaurant and is taken to the hospital, where Dr. Hibbert tells him he has, "Twenty-four, well, twenty-two hours to live. Sorry I kept you waiting." He then gives Homer a pamphlet with a picture of heaven's pearly gates and the title, "So you're going to die..."
When I was a vegetarian I used to make a "cultural exception" for each country.  This was so I could sample things like camel's paw in China (tastes like chicken), or the Cuy in Peru (guinea pig, tastes like chicken).

In the US, my cultural exception was In-N-Out Burger, and yeah, they were pretty good.  Much better than chicken.  Oh well.  The analogy only goes so far...

Finally, this bonus link is courtesy of Bob Arnold, MD.  It has almost nothing to do with everything above.  In a redemptive move, JAMA just published an "amazing" (Bob's word) personal reflection from Chris Feudtner, MD, PhD, about the last day of his father's life in the nursing home.  Note how Chris has to ward off the nurse supervisor, who calls 911 stating that the POLST order, "Do not hospitalize unless his comfort needs cannot be met," is unclear. That's one piece of this important story, which is also about presence, touch, and forgiveness.  The story is titled, "A Hand to Hold."






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Friday, July 8, 2016

Please Don't Talk About Aging!!!



by: Ken Covinsky @geri_doc

A colleague of mine, who is chief of the Geriatrics Division at a major medical school, recently relayed to me the following story about a conversation with with a leader at their University  when discussing plans to promote the University’s work to potential donors.  I found the report kind of discouraging.  The interaction went something like this:

University Leader:  We are having a wine and cheese reception to show some of our donors the great work that is being done at the University.  We thought it would be great to give them a talk about successful aging.  Would you be willing to talk to them?

Geriatrics Chief:  Gosh.  Thanks for inviting me.  I would love to tell them about all the great work we are doing!  We have some really innovative clinical programs to help seniors who are becoming disabled.  We also have a new initiative to help stressed out caregivers.  I bet your donors will be really excited to hear bout a new program we are developing to help caregivers of our patients with Alzheimers Disease.  And we have some really great research too.  We are learning about how it is possible for older people to maintain  a great quality of life, even when they have major physical or cognitive problems.

University Leader:  Oh no no no!  Please don't talk about that.  Our donors don't want to hear about all the problems with aging.  They want to hear about how they can avoid all that stuff.  Can you talk instead about how to l live a long life and avoid all the diseases of aging?

I have heard similar stories over the years, and each time my immediate reaction is .... well lets just say probably unconstructive.

These are of course tough things to talk about.  But when we avoid talking about the problems of aging, we devalue and disrespect our patients who are dealing with these problems.  

The societal unwillingness to confront the problems of aging is major contributor to a health system that utterly fails to address the needs of vulnerable elders, subjecting them to an overly medicalized approach that often does more harm than good, while failing to provide social and palliative solutions that would help and cost less.

What is the right response to the "don't talk about aging" request?




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Wednesday, July 6, 2016

Fast food-style palliative care consults found inneffective, may cause PTSD


by: Alex Smith, MD.  Alex Smith was formerly a palliative care attending at UCSF.  Now that his work has been shown to be ineffective and possibly harmful, he is seeking new employment.  If you know of a job for a former palliative care physician, please tweet Alex @AlexSmithMD.


Groundbreaking new study published in JAMA yesterday.  Wait, is "groundbreaking" the right word?  Perhaps "retrenchment" is a better word, as in "the act of cutting down or cutting off." As in the take home message of the first author: we don't need palliative care, cut them out; ICU docs are doing just as well or better without them.

You may have heard some of the buzz about this paper, as in JAMA's tweet:

My reply to this was:

The take home message of this study should not be that palliative care consults for ICU patients are ineffective and cause harm.  As a community, we have a responsibility to make sure that's not the take away.

First, a bit about what they did.

The study was conducted by a terrific group of researchers, led by Shannon Carson, physician and chief of pulmonary critical care at U North Carolina, and also included Laura Hanson, James Tulsky, and Judith Nelson, among others. 

They randomized 356 surrogate decision makers for patients who were in the ICU and on a ventilator for 7+ days to a palliative care "support and information" intervention vs. control group.  Both groups received a brochure about what to expect.  The study was conducted at Mt Sinai, UNC, and Duke. 

What did they find?
  • No difference in anxiety or depression (primary outcome)
  • No difference in rating of communication quality (all the rest of these are secondary outcomes)
  • No differences in end-of-life treatment intensity
  • No statistically significant difference in length of stay (4 days shorter with intervention, but not significant)
  • Higher PTSD symptoms in the intervention group

You read that correctly, higher PTSD in the palliative care group.  What, you might wonder at this point, did this palliative care "support and information" intervention team do in these meetings with surrogates?!?

Well, as best as the study investigators could gather and report, the palliative care team (palliative care physician and NP, with or without other team members):
  • Had an average of 1.4 meetings per surrogate
  • Discussed prognosis at 100% of initial meetings and 91% of second meetings
  • Prognosis was calculated using a validated 1 year prognostic index (ProVent score - this links to Christian Sinclair's post on Pallimed)
  • Discussed goals, values, and preferences at 89% of initial meetings
  • ICU physicians attended fewer than 9% of palliative care team meetings

So why didn't it work?  Why were PTSD symptoms WORSE with the palliative care intervention?

Doug White writes a terrific accompanying editorial outlining several possible explanations for these findings.  The main one I want to highlight is this
"The intervention was not a full palliative care consult, which typically involves more frequent encounters with palliative care practitioners, active management of patients' symptoms, and involvement of social workers and chaplains."

Exactly.  With all due respect to the outstanding palliative care clinicians at Mt. Sinai and Duke, these were not full palliative care consults.  They were "In-N-Out fast food-style" palliative care consults (Google In-N-Out, East Coasters).

An average of 1.4 encounters, and on the very first encounter you cover prognosis and goals of care?  I do that every once and awhile, but my primary goals in the first encounter are usually (1) to introduce the idea of palliative care; and (2) to form a relationship with the patient or surrogate: Who are you?  Where do you come from?  How are you? 

I try very hard not to get into the heavy stuff of discussing prognosis until I know the person and have formed a relationship.  I try to encourage people to involve palliative care early in the process, prior to 7 days on a ventilator, as a great deal of the important work (and sometimes misinformation) has already happened. 

And when I'm consulted about one of these patients, I work together with the ICU team, often meeting with family in conjunction with the ICU residents, fellows, attendings, social workers, and chaplains.  I'm part of a team, and it's important for patients and family members to see it that way.  In this study, the ICU docs hardly every saw surrogates together with the palliative care intervention group (less than 10% of the time). 

So yes, it's true that there is currently no evidence for routine brief palliative care consults with surrogates of chronically critically ill patients where you don't consult until after treatment decisions are made and goals established and only see the patient once and don't have a full interdisciplinary team or work with the rest of the ICU team.  Fine.

Palliative care clinicians, don't give up your day jobs!  There's more research to be done here.


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Tuesday, July 5, 2016

Do Proton Pump Inhibitors Increase Risk for Dementia?

Case: Ms. P is a 76 year old lady with a past medical history of GERD, osteoporosis status post right hip fracture, C. diff infection in 2011, uterine fibroids status post TAH-BSO, who comes in for a follow-up visit. Her medications include omeprazole 40 mg daily, vitamin D 800 IU daily, alendronate 70 mg weekly. Physical exam is unremarkable, except for BMI of 18. During medication reconciliation, she asks, “I heard that my omeprazole can cause dementia…”

I recalled the recent NY Times article about heartburn drugs related to increased risk of dementia and wondered if that could be possible. I told Ms. P, “I will look into that and let you know if you need to be concerned about that.”

The question was: In older patients, is the exposure to proton pump inhibitor (PPI) medications as compared to no exposure associated with increased risk of dementia? In order to answer this question, I performed a search for “PPI and dementia risk” in PubMed. I found two recent studies to review.


In 2015, Haenish and colleagues published the results of the German Study on Aging, Cognition and Dementia in elderly primary care patients (AgeCoDe). This was a longitudinal, multicenter cohort study involving 3,327 community-dwelling persons aged 75 years or older without any dementia at baseline. There were four 1.5 year follow up points with an overall follow up time of 6 years. Using time-dependent Cox regression, the authors found that PPI users had a significantly increased risk of any dementia [Hazard ratio (HR) 1.38, 95% confidence interval (CI) 1.04-1.83] and Alzheimer's disease (HR 1.44, 95% CI 1.01-2.06) compared with nonusers. This risk persisted after adjusting for potential confounding factors: age, sex, education, ApoE4 allele, polypharmacy, depression, DM, ischemic HD and stroke.

In 2016, the same group published results of a larger prospective cohort study using routine claims data from the largest mandatory public health insurer in Germany. The study included 73,679 elderly patients, aged 75 years or older free of dementia at baseline that were followed for 7 years. After controlling for confounding factors (i.e. age, sex, polypharmacy, stroke, depression, ischemic HD, DM), the study found an association between regular PPI use and incident dementia compared to PPI non-users [hazard ratio, 1.44 [95% CI, 1.36-1.52]; P < .001]. Interestingly, the HR for occasional PPI users over non-users was 1.16.

These studies show a potential relationship between PPI use and increased risk of new dementia. However, there are several caveats. Cohort designs can only demonstrate an association, not causation. The authors’ conclusion that “the avoidance of PPI medication may prevent the development of dementia” must be interpreted with caution. This one is, at best, a weak association, with a wide confidence interval (in the first study). A randomized, placebo-controlled study would need to be performed to show a causal relationship. A dose–response relationship, if reliably demonstrated, might strengthen the association. It is also interesting to note that the prevalence of PPI use in Germany is about four percent, whereas it is higher in the US, especially given it’s availability over the counter.

It is fair to say however, that unnecessary, long-term use of any medications – including PPIs – should be avoided. Until we have further information, prescribers should remain judicious in the use of PPIs and look for inappropriate prescribing, especially in geriatric patients who are at risk for polypharmacy and the negative implications of medication over-prescription.

By Eugenia Shmidt, MD, GI Fellow at Icahn School of Medicine at Mount Sinai, New York


References:
1. Haenisch B, von Holt K, Wiese B, Prokein J, Lange C, Ernst A, Brettschneider C, König HH, Werle J, Weyerer S, Luppa M, Riedel-Heller SG, Fuchs A, Pentzek M, Weeg D, Bickel H, Broich K, Jessen F, Maier W, Scherer M. Risk of dementia in elderly patients with the use of proton pump inhibitors. Eur Arch Psychiatry Clin Neurosci. 2015 Aug;265(5):419-28.
2. Gomm W, von Holt K, Thomé F1, Broich K, Maier W, Fink A4, Doblhammer G, Haenisch B. Association of Proton Pump Inhibitors With Risk of Dementia: A Pharmacoepidemiological Claims Data Analysis. AMA Neurol. 2016 Apr 1;73(4):410-6.
Photo courtesy: Will Culpepper

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
@RavRamaswamy
Section Editor, #GeriCases
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Monday, June 27, 2016

Who prescribes donepezil or memantine for dementia? Not Geriatricians from the Bronx...


by: Eric Widera (@ewidera)

There are two main drug classes use to treat Alzheimer's disease, cholinesterase inhibitors (ChEIs) and the NMDA-antagonist memantine. Both have shown statistically significant improvements in outcomes for patients with AD, but the clinical significance of these benefits is marginal at best.   Furthermore, these benefits vary with disease severity, with ChEIs showing benefit from mild to servere dementia, and memantine showing benefit only in moderate to severe disease.

So how closely does clinical practice mirror the evidence behind these drugs?   A new study in JAGS suggests that your chances of being started on these drugs is about 50/50, and has less to do with FDA approved indications, and more to do with who you see and where you live.

The Study

The authors used a national sample of Medicare beneficiaries enrolled in Medicare Part D from 2008 to 2010 and evaluated the frequency of ChEI’s and mematine prescription fills in people with a diagnosis of any type of dementia.  They compared individuals with similar disease severity based on a proxy of whether the participant lived in residential care. Because the measure may be imperfect in its correlation with dementia severity, drug use according to whether the participant died within a year of index diagnosis was also reported.  Information on visits to a neurologist, psychiatrist, or geriatrician in the 2 months before and after the date of the initial diagnosis was captured as an indicator of specialty involvement.

The Results

1. About half (56%) of all people with a dementia diagnosis receive either cholinesterase-inhibitors or memantine within a year of the index diagnosis.

2. There is no difference between use of ChEI or memantine related to the study’s proxy measure for dementia severity.   Furthermore, about half (45%) of those patients with dementia who died within 1 year of their index diagnosis were on one of these agents.

3. Factors not directly related to dementia, such as race and region of residence, influence treatment rates ChEI or memantine.    Turns out Bronx, NY, has the lowest rates of using them!

4. The type of clinician involved in care may independently influence whether a person is treated with ChEI or memantine.   Neurologists and psychiatrists are more likely and geriatricians less likely to prescribe ChEI’s and memantine than when primary care manages alone.


The Take Home

Apparently, if you don't want to be put on cholinesterase inhibitors (ChEIs) or memantine, live in the Bronx and visit with a local geriatrician.  


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Sunday, June 26, 2016

Palliative Care: Who Do We Serve?


by: Eric Widera (@ewidera)

Some of the best evidence for palliative care comes from interventions focused primarily on individuals with advanced cancer.  The problem is that most people in the United States die from diseases other than cancer.    So, how well do we serve them?

A new study published today by Melissa Wachterman and colleagues compared patterns of end-of-life care and family-rated quality of care for patients dying with cancer and other different serious illnesses.   What they found continues to demonstrate the benefits of palliative care, but also shows that we need to expand our world view beyond cancer.

The Study

The authors looked at inpatient deaths in 146 medical centers within the Veteran Affairs health care system between 2009 and 2012.  They further restricted their analysis to patients with clinical diagnoses categorized as end-stage renal disease, cancer, cardiopulmonary failure (congestive heart failure or chronic obstructive pulmonary disease), dementia, frailty, or “other” conditions.

They compared patterns of end-of-life care and family-rated quality of care for these patients by looking at rates of palliative care consultations, do-not-resuscitate orders, deaths in inpatient hospices, and deaths in the intensive care unit.  They also evaluated family-reported quality of end-of-life care using the Bereaved Family Survey.

What they found

1. Palliative care consultations are much more common in those with cancer.
Among the 57,753 patients who died, 74% of patients with cancer had palliative care consultations.   The percent who received palliative care consultations dropped from there: dementia (61%), ESRD (50%), CHF or COPD (47%), and frailty (44%).
2. Patients who die of things other than cancer and dementia die more often in the ICU.
Around a third of patients with ESRD (32%), COPD/CHF (34%), and frailty (35%) died in an ICU, much higher than that seen in patients with cancer (13%) and dementia (9%).
3. Family-reported quality of end-of-life care was significantly better for patients with cancer and dementia than for patients with ESRD, COPD/CHF, or frailty.
Excellent quality of end-of-life care reported by families was similar for patients with cancer (59%) and dementia (59%), but less for those with ESRD (55%), CHF/COPD (55%) and frailty (54%)
4. When palliative care consultations occur for these other diseases, it levels the field
Palliative care consultations mediated most of the diagnosis related variation in family-reported quality of end-of-life care.

Take Home

Improving end of life care for individuals with cancer is important, but its not the only thing that individuals die from.   As a field, we need to do more to improve access to palliative care for everyone living with a serious illness, no matter what the diagnosis.
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Wednesday, June 22, 2016

Yet another harm of docusate

by: Eric Widera (@ewidera)

We’ve written about the harms and lack of efficacy of docusate a fair amount on Geripal (here, here, and videos here).   This week in JAMA IM another fantastic research letter came out that should put another nail in docusate’s coffin by focusing on the indirect costs of prescribing this medication.

What did they do in this study?

The authors used pharmacy data for fiscal year 2015 from the McGill University Health Centre in Canada. They compiled doses and drug costs for the medical and surgical units for oral laxatives.   They also estimated that it took 45 seconds of nursing time for each medication administration and used Quebec base salary for university-trained nurses to estimate nursing costs.

What did they find?

Doctors love writing for docusate.   It was the most commonly prescribed laxative, accounting for 64% of all doses of laxatives.   This meant that nurses spent 2,065 hours to administer over 165,000 doses of a docusate, despite a paucity of data to support its use.   The total costs of all this nursing time just to prescribe decussate was estimated to be over 57,000 Canadian dollars.

Furthermore, among those who were discharged from the hospital, half got prescriptions for decussate products.

Take home point

I’m going to leave it to the authors for the conclusion:
“In our institution more than 250 000 doses of laxatives are administered annually, requiring the equivalent of almost 2 full-time nursing positions to dispense. Sixty-four percent of use involved docusate-based softeners, for which there is little quality evidence supporting efficacy in constipation prevention or treatment….   While seemingly trivial, the routine use of docusate products in a constrained health care system is wasteful.”
We couldn't agree more.   So much so that we also wrote an accompanying editorial on this study in JAMA IM, summarizing the efficacy, harms, and costs of docusate.  



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Wednesday, June 15, 2016

Physician-assisted death: A door worth walking through



I met him once. He was referred to me for pain management and depression. In our visit, he described a series of losses over the previous six months—he had lost his identity when the cancer, radiation and surgery had deformed his face; he lost intimacy with his wife as the odor from dead tissue kept them distanced; and he lost connections with friends as it became more difficult to speak clearly. His biggest worry now was about losing his dignity. We talked about what dignity felt like for him, and what a death with dignity would look like. He spoke of choice, control and independence. He defined loss of dignity as the moment when he needed full care—complete dependence. This was the line for him and he was coming frighteningly close to it. I was able to treat some of his symptoms, offering antidepressants, opioids (with some control over dosing), hospice referral and continued conversations with a caring provider. Almost in a disconnect with the hopelessness that he exuded, he politely agreed to start all of the medications I recommended, and see a psychologist specializing in oncology.

Over the next month, we adjusted his pain medications, uptitrated his antidepressant, and he saw the psychologist. Then I got a phone call from my office saying he had ended his life. Immediately, I called his wife. She was tearful and calm. She explained that he was now peaceful, out of discomfort and free of his existential suffering.

Like most people who have taken the path of physician-assisted death (PAD) in other states, my patient was white, educated and valued control at the end of life. Unlike most of those people, he was completely alone at the end of his life. He was not surrounded by his family, friends or providers, whom he cared for greatly. Instead, he wrote individual letters to his closest friends, family members and his home nurse, asking them to not view his death as a suicide, or a reflection of inadequate care. He asked them to understand that he had to find a way to maintain dignity. He existed in the space described by Quill, Back and Block of many patients who request PAD: “a zone between clinical depression and the sadness of seeing their lives come to a close.”[1] Any features of depression were expressions of existential grief and sadness about his many losses, unlikely to be alleviated with antidepressants and psychotherapy.

Like a good trainee, I had asked him if he had thought about ending his life. He said no. Did he say no because he knew that I worked within a system that required me to interpret a yes as self-harm? Was he savvy enough to know that, while I might be a thoughtful provider, I could not legally help him in that journey and achieve death with dignity, as he defined it? As the End of Life Option Act goes into effect in California, I find myself thinking about this patient. I wonder how our visit would have gone differently if we met this week? Would the end of his life look different? While these questions are ultimately unanswerable, I do know that the law has changed my conversations with patients. It has opened doors to quiet and deeply emotional places, and exposed existential nooks and crannies that otherwise might be left undiscovered. It has allowed me to view and act on behalf of patients’ autonomy in a new way and has made concrete the penultimate goal of shared decision-making.

At the same time, I am acutely aware of the complexities of this law around vulnerable patients. I share the worries of Dr Petrillo, Dr Dzeng and many other colleagues around the tyranny of choice, alienating patients and worsening mistrust. I worry that Death with Dignity will become yet one more managerial aspect of “quality clinical care” that is inadequately or insufficiently delivered to patients of color, poor patients, the disabled and those with mental illness. These groups often received less adequate care in other aspects of medicine. The open dialogue around vulnerable patients is one way to work against this inequity. Advocacy to protect vulnerable people represents an important voice in health care that is not heard enough.

We worry because, like other aspects of medicine, aid in death might also fall prey to checklists and protocols, with patients slipping through the cracks inherent in a protocolized system of care. We worry that there will not be enough human interaction with skilled, trained and flexible physicians who can recognize the zone between depression and sadness. We worry that there will not be a strong enough fight for increased access and against coercion. As suggested by many proponents of the law , this work requires better mental health care, expanded palliative care and hospice services, aggressive symptom management and the involvement of more than one provider.[1] The question, though, is how to make this care thoughtful, individualized and psychosocially oriented.

Possibly more than any other discipline in medicine, Hospice and Palliative Care is poised to deliver this unscripted, individualized, thoughtful care. We don’t do checklists; we don’t follow scripted plans for each patient. Sure, we use acronyms, but mostly we follow subtle leads, nonverbal cues, a look, a sense of an emotion, and we meet the person there. We can call for general protocols to provide a framework for safety in this process, but must also individualize that approach to the person in front of us.

We can do this—subtly, delicately and compassionately—just the way we aim to do all of our work. We can do this, not just because we have the capacity to balance autonomy, justice and nonabandonment, and not just for the few patients who will actually follow through on their request for PAD, but for the doors that it opens and the spaces that asking these questions will take us to. I couldn’t ask my patient about a life worth living in a way that allowed him to tell me his truth. I asked if he was planning on committing suicide. He said no. He was planning on Death with Dignity. 

by: Catherine Trimbur


[1] Quill, Back, Block. “Responding to Patients Requesting Physician-Assisted Death; Physician Involvement at the Very End of Life” JAMA. 2016;315(3):245-246.
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Friday, June 10, 2016

Aid in dying: a wedge issue for palliative care





by: Alex Smith MD, @AlexSmithMD


I've written before about my evolution in thinking about aid in dying.  How, while I was in medical school, my parents were very in favor of legalizing aid in dying in Michigan after my dad was diagnosed with brain cancer.  Also while in medical school, I read two books that further inspired me to go into palliative care: A Midwife Through the Dying Process by Tim Quill, and Dying Well by Ira Byock.  These two authors and luminaries of palliative medicine also happen to be leading voices at opposite ends of the spectrum on the issue of aid in dying.  These readings implanted an early ambivalence about legalization of aid in dying.


Later as a palliative care physician in training I became even less enamored with aid in dying, as all the patients I cared for who expressed a wish to die stopped making such requests with multidisciplinary attention to reversible sources of suffering.


Many in palliative care have worked hard to distance themselves from the "death doctor"  perceptions.  Any association between palliative care and physician aid in dying is concerning to many of us who have tried to dispel those perceptions.  Some in palliative care, like a mentor in medical school, are so emotionally invested in being opposed they leave no air in the room for debate.  For others in palliative medicine, the opportunity to provide the service of aid in dying is one of the reasons they were inspired to go into the profession.  Not that it's an ennobling act, but that it is a way to provide relief of suffering, one of the most basic reasons we went into medicine in the first place.


But let's be honest: this can be a wedge issue for our community.  In a community that has been so unified over it's mission, nothing divides us as deeply as this issue.  I've been in the heated debates.  I've heard the whispered, "How do you feel about...?" 


Aid in dying is an issue that has received far more attention than it deserves relative to the needs and desires of the overwhelming majority of patients living with serious illness: pain and other symptoms, treatment of spiritual suffering or existential distress, and access to hospice and palliative care services.  Put another way, physician aid in dying has only been a major issue primarily for a very small subset of highly educated white men.  I have serious concerns about laws created primarily to help best off groups.


For years, my position had been to stick my head in the sand and ignore physician aid in dying.  Hope it went away.  Perhaps because I'm a middle child - the peacemaker - all this conflict among mentors I respect deeply is frighteningly uncomfortable.  Well now I can't ignore it.  It's legal in California where I practice (though not at the VA hospital where I work).


Our focus has to shift.  Palliative care providers not just in California but around the nation need to harness the momentum of this moment to unify around a common approach to responding to requests for aid in dying. An approach that doesn't start with "yes," or "no," but "why?"  An approach that includes referral to palliative care for many, most, or perhaps all patients.  An approach that recognizes the need for palliative care services where none currently exist.  An approach that prioritizes research into the impact of legalization on vulnerable groups.

We're a mature enough field that this issue shouldn't divide us.

As of yesterday, physician aid in dying became legal in California.  Coinciding with this moment, this is the third in our series of posts about physician aid in dying, prior posts are here and here.  For those who missed it, there's a nice discussion going on in the comments about the first post, that I'll paste in part below:

Diane E. Meier said...


Hi Elizabeth- thank you for this superb analysis. I think the meta-message of public policy enabling aid-in-dying is an explicit endorsement of the "You're on your own" thematic threads in American society and manifests a societal acceptance of the very low expectations Americans have come to have on our health care system. It's as if we (policy makers and the medical profession) are saying- "you're right to be afraid, members of the public- we can't address your suffering, so we're going to make it easier for you to end your life." It reinforces the meme that we can't rely on one another for care and support, that dependency and need for care is shameful, and that the medical profession has no role/responsibility in alleviating misery. This is why I think palliative care professionals should be outspoken in their opposition to such legislation, and instead be loudly calling for a culture (and a health system) of care.

Gregg VandeKieft said...


Thanks for a thoughtful and thought-provoking post, Liz.

One thing keeps nagging at me though: is this a false dichotomy? That is, need it be either/or, or can it both/and? Practicing in WA for an employer that opted out of our Death With Dignity Act (so as a non-participating physician), I've had many conversations with patients who inquire about physician-assisted dying. Very few have followed through, but those who did received excellent palliative care and all were on hospice. They made an informed choice, based on their values, goals, and preferences; it wasn't about inadequate symptom control, system failures, or baseless fears. And my anecdotal experience mirrors extensive data from WA and OR - the abuses and concerns raised in opposition to the laws have not materialized in a tangible way. CA is certainly more diverse than OR or WA and has a much larger population, so things may play out differently, so I don't assume the WA and OR experience will be exactly replicated in CA. Perceptions may also differ since the OR and WA laws were the result of citizens initiatives approved by a substantial majority of voters, rather than a legislative act like CA's End-of-Life Options Act.

The availability of palliative care remains my major concern - allowing PAD to anyone without access to excellent palliative care is very problematic. We must also be cognizant of the optics as palliative care professionals - after working so hard to dissociate our discipline from "death panels" misperceptions, we should be wary about how participation in PAD may affect our "brand."

Of course, the law is upon you now in CA, regardless of our philosophical, political, or moral viewpoints about its rightness or wrongness. It seems the best next steps will be advocacy for excellent palliative care for all Californians, and training physicians at the point of care how to respond to inquiries about PAD in a manner that opens up the sort of rich dialogue that fosters the best care possible. The conversations that follow these inquiries are almost always profound, and the overwhelming majority do not culminate in PAD, so we need to focus on how to help all those who inquire.

Thanks again for your post!


Liz Dzeng said...


Thank you very much, Diane and Gregg for your very thoughtful comments, and for engaging in this dialogue. The experiences Americans encounter in health care are diverse - influenced by socioeconomic status, geography, health literacy, race, gender, ethnicity, etc. I am very glad to hear that the patients you've encountered have had excellent palliative care and that the majority of them have had the resources and ability to make informed decisions supported by palliative care. This is no doubt due to the excellent service you and your institution have provided.

I agree that for those who have access to palliative care and have made that informed choice, it is appropriate and the choice is one that I completely support. I believe that there are aspects to the dying process such as a perceived lack of control and changes in personhood that can not always be addressed adequately, and for those people, PAD might be the right choice. However, the law has been applied to all Californians, and not just those who were privileged. I am worried about giving choice over care to those who aren't so lucky.

I also wrote this blog from a more societal rather than individual perspective - that the rallying cry for choice comes, as Diane described, from a rather neoliberal attitude that choice is the only way to resist the tide of overly aggressive care at the end of life. Which I think only puts a bandaid on that larger problem.

I completely agree with you, Gregg, that ensuring availability of palliative care is integral to a moral response. I recognize and understand palliative care's hesitancy to associate with PAD. However, I feel that to do so would be a disservice to those who are facing an uncertain and scary future as they near the end of their life.

I have mixed feelings about the law, but as we've all stated, the law has passed, and so I believe that this is the time to think about the patients who are contemplating PAD and in need of palliative care services and support rather than as Gregg say, how PAD might affect the "brand."

We have two populations that now have access to PAD. Those with access to palliative care and those who don't. As Gregg points out, choice and care doesn't need to conflict for those with access to palliative care. For those without access, I worry that they have been given an unempowered and potentially unethical choice. I believe now is the time to put the patient first and provide the care and guidance that so defines the palliative care profession, so that the great numbers in the latter category can move into the former.
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