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.


Read more »

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?

Read more »

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

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
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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Thursday, June 9, 2016

Can physicians initiate conversations about aid in dying? Should they?

By Laura Petrillo, MD, @lpetrillz

As of today, it is legal for seriously ill patients in California to request lethal medication to end their lives from their physicians. That’s the verb that the End of Life Option Act uses, request.  One imagines a very determined patient, let’s call her Helen, asking her physician about something that’s been on her mind since she learned about her metastatic cancer: “Doctor, will you help me die?”  Maybe she saw Brittany Maynard on the cover of People magazine, or read about Jerry Brown’s opinion that it would be “a comfort” to have that option if he were dying and in pain. She is educated, like most of the people who use the Death with Dignity Act in Oregon, and eager to have control over the moment of her death. 

But what if Helen hadn’t read the news about the End of Life Option Act, and didn’t know that aid in dying was now legal in California? Imagine instead that she has just come to her follow-up appointment, nervously, to find out the results of her recent scans— and the results aren’t good. After her oncologist breaks the bad news, Helen asks, “What’s next?” The oncologist runs through the options of palliative chemotherapy, a clinical trial, or hospice when the time is right. He pauses. Now that it is legal in California, does he need to include aid in dying as one of the treatment options that he presents?  

Let’s first deal with the question of “can a physician bring up aid in dying?” Though the law requires that the patient has “voluntarily expressed the wish to receive a prescription for an aid-in-dying drug” in order for a physician to write a prescription, there is no clear requirement that a physician must wait for the patient to broach the subject. In the extreme, the law makes it a felony for anyone to knowingly coerce or exert undue influence on a person to consider aid in dying, but coercion is a high bar. So a well-meaning physician, who wants to ensure that his patients are making a fully informed decision, could put the option on the table, and as long as he doesn’t overtly browbeat the patient into making a formal request, he would be in the clear. Even if he were to be suggestive, and a family member or medical colleague brought the case to the attention of the Medical Board, the physician would only have to demonstrate that he was acting “in good faith” to avoid repercussions. 

Putting aside what’s legally permissible, perhaps the thornier question is, “should a physician bring up aid in dying?”  There has been an enormous shift over the last few decades to give patients more information and decision-making power, codified by the Patient Self Determination Act and evident in processes like informed consent. Some argue that patients like Helen, who has not heard of the End of Life Option Act but is eligible, should have the right to know her legal option of aid in dying and further, that it is the physician’s job to inform her.  Once she has all of the facts from the doctor, she can make a choice that matches her values. 

The only trouble with that concept is that the conveyance of information from physician to patient is never so purely technical and devoid of the physician’s values. Nor are patients and physicians on equal footing in terms of power. In choosing the moment to introduce the idea of aid in dying, the physician makes a value judgment that the patient may be at a point where they would consider that speeding up death is better than living. While some patients may feel comforted that their doctor is willing to talk about the subject, others may feel "a breach of trust, or abandonment,"* particularly those who already distrust the healthcare system.  Providers may unintentionally convey the message that the patient’s life is of diminishing value, or that the road ahead is so hard that the best treatment we have is death hastening. And though they may not even be aware, physicians may counsel patients differently based on implicit biases, and exert an influence over what patients choose by the order in which they present options. 

Chances are Helen read People magazine anyway… and if she were interested in aid in dying she could make her wishes known.  But if she didn’t, her oncologist should not presume that she shares his values and would welcome learning about aid in dying from him simply because she qualifies. 

*Dr. Alicia Fernandez, personal communication
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Tuesday, June 7, 2016

Aid in Dying: a triumph of choice over care?

by: Elizabeth Dzeng (@LizDzeng)

On September 11, 2015, the legislative bodies of California and the United Kingdom were both faced with the decision to legalize physician assisted dying. Both bills were remarkably similar and based on the Oregon Death with Dignity bill. However, UK lawmakers decisively rejected their bill while their California counterparts approved the End of Life Option Act.

Post-hoc analysis of why the bill failed in the UK and why it succeeded in California point to the usual arguments; concerns about the protection of vulnerable populations and fears of a slippery slope on one side and calls for control and dignity to the end on the other. However, I believe that the different paths taken this day might reflect the different philosophies these countries hold regarding the primacy of choice and autonomy.

That it passed in California might reflect America’s sociopolitical tendencies towards individual rights and autonomy, and the nation’s mistrust of institutions such as the government and medicine, in favor of personal control over one’s own destiny. This is evident in America’s health care system and in particular end of life decision-making, where cultures and policies tend to idealize choice and autonomy. For example, while local variations undoubtedly exist, hospital policies and cultures regarding Do Not Resuscitate decision-making commonly prioritize autonomy.

In particular, New York State law mandates that a physician must perform resuscitation if the patient or surrogate requests it regardless of whether they think it would be clinically appropriate (Spitzer, 2003). It has been shown that institutions that prioritize autonomy over best interest promote cultures where physicians more frequently fail to guide patients by making recommendations (Dzeng, 2015). Rather than empowering patients, a discourse of choice unintentionally allows physicians to derogate from their responsibility to educate and guide and threatens to abandon patients at their most vulnerable moment.

Over the past few years, there has been a shift towards greater awareness that Americans are not dying well. The popular press is rife with stories of helplessness in the face of technologically intense, aggressive care that dehumanizes the last stage of the natural life process (Gawande, 2014). The death with dignity movement reflects this desire to regain control in the face of bewildering choices and the helplessness that comes with being asked to make choices with implications for which they are not fully informed.

However, adding this choice to end one’s life might further exacerbate this overwhelming list of options. It potentially does patients a tragic dis-service by giving them the option to end their lives as a poor alternative to providing the palliative care services and guidance that should have been provided. We have already seen in Oregon and the Netherlands doctor shopping for physicians willing to prescribe medications that will cause death (Snijdewind, 2015). This further disrupts the continuity of care that is so essential for a trusting relationship.

Maybe rather than focusing on this discourse of choice, we should instead shift our priorities towards creating a culture of care. To fix this broken system, we need to focus on humanizing the end of life and embrace the spiritual and psychosocial aspects of dying, strengthen clinical palliative care services, and work with the patient to promote genuine understanding of the choices that will realistically accomplish the patients’ goals and values.

Perhaps lawmakers in the UK, a health care system that has traditionally focused on best interest decision making (UK Mental Capacity Act, 2005), recognized that the ability to choose aid in dying was more deleterious than focusing on providing clinical and psychosocial support as a means to a good death. Indeed, a recent Economist Intelligence Unit report ranked the UK number one in the world for Quality of Death. The UK has a rich history of care of the dying, as exemplified by Dame Cicely Saunders and her creation of the hospice movement. Temel’s landmark study on the benefits of early palliative care was greeted with excitement and surprise by the American community, and yet my British colleagues found the hype confusing since early palliative care through their National Health Service (NHS) had always been the standard (Temel, 2010).

While the debate on aid in dying continues nationally, the time for divisive debate in California needs to move instead towards crafting a moral response to the Act. Instead, those who oppose and supported the bill must come together as united advocates whose ultimate goals have always been to improve quality of death. It would be tragic if patients felt they need to resort to aid in dying because they were not provided with adequate palliative care support. Health care practitioners must recognize that there is oftentimes underlying meaning behind their requests and ensure that the patient has their palliative care needs addressed.

California must use this as a catalyst to redouble efforts to improve palliative care in California and the US more broadly. Practitioners will need to develop their individual and institutional responses on how best to provide safe, ethical care that respects both the patient and their choices. The CAPC Report Card gave California a “B” score, signaling the need to focus on improving support. The low frequency of requests and enactments of aid in dying in Oregon and Washington have been in part due to their efforts to improve palliative care services and training in response to their Death with Dignity Act (Lee, 1996).

Dignity is a term that has been embraced by advocates of aid in dying, but perhaps the way to enable a dignified death lies not merely in choice, but through fostering a humanistic, supportive, care based palliative care infrastructure.


Footnote: This is a series of posts this week on Physician Assisted Death in recognition that California's physician-assisted dying law, ABX2-15 (AB-15), the End of Life Option Act, takes effect on June 9, 2016.
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Wednesday, May 18, 2016

Just ask-tell-ask: Physician-Surrogate discordance about prognosis in the ICU

by: Alex Smith, @AlexSmithMD

I'm sure that all of us have encountered this scenario: the doctor thinks patient's prognosis is not good, but the family thinks it's not so bad. 

Why does this happen?  A nice study published yesterday in JAMA sheds considerable light on the issue.  Doug White and colleagues interviewed 229 surrogates of critically ill ICU patients and their ICU physicians at UCSF.  All patients were on a ventilator (breathing machine) and had been in the ICU 5 days. In 53% of instances, the physicians and surrogates held discordant estimates of the patient's prognosis, defined in this study as at least a 20% difference in likelihood of survival to hospital discharge. 

The differences were 4:1 slanted in favor of more optimistic prognostic estimates on the part of surrogates.  One particularly unique feature of this study was the use of qualitative open-ended questions to understand the reasons surrogates were more optimistic.

It turns out that there were two main sources for the discordance between ICU and surrogate perspectives:
  1. The surrogates misunderstanding the ICU physicians prognostic estimate.  The surrogates thought that the ICU physician's estimate was more optimistic than the ICU physician's actual estimate.  In other words, there was a communication breakdown between what the ICU physicians reported and what the surrogates best guess of the ICU physicians prognostic estimate.
  2. Differences in beliefs.  The quotes from the qualitative analysis were illustrative.  (1) Surrogates felt it was important to hold an optimistic estimate because maintaining hope was beneficial to the patient, "I'm trying to think positive;" (2) The surrogate knew the patient had strengths that the physician was unaware of, "[The doctors] don't know his will to live;" and (3) Religious beliefs, "[It's] up to God."
Who was right?  Both were able to predict who survived and who died better than chance alone.  The physicians were slightly (and statistically significantly) better than the surrogates.  Remembering that a coin flip or 50% represents chance alone, the surrogates were 24% better than chance alone.  The physicians were 33% better than chance alone.

Major takeaways:
  • The authors were careful to use the word "discordant" rather than "disagreement."  Disagreement would have implied a conversation about prognosis took place where the doctors and surrogates disagreed.  While 80-90% of surrogates and physicians reported that a conversation about prognosis took place, it's not clear what happened in that conversation.  My guess is the doctors "disclosed" their estimate of prognosis, perhaps being more optimistic with surrogates than they reported for the study.  It's very possible, perhaps likely, that the physicians did not ask the surrogates their own perspective of prognosis, so there was no opportunity for disagreement. 
  • Just ask-tell-ask.  The ask-tell-ask framework is palliative care bread and butter, yet the importance of using it simply cannot be overemphasized.  Some modifications are in order based on these findings: (1) Ask what the surrogate thinks the prognosis is, and what informs that perspective, including desire for optimism, sources of strength and resilience, and religious beliefs; (2) tell what you think the prognosis is and discuss your reasons; (3) ask again to see if this information has changed their views of prognosis.  See this model conversation from ePrognosis about how to use Ask-Tell-Ask.
  • JAMA publishes qualitative research?!?  Off the top of my head, I think it's been some 20+ years since JAMA published any qualitative research.  Hurrah! 

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