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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Monday, May 16, 2016

How We Die: It’s Less about Who You Are and More About Where You Live

by: Eric Widera (@ewidera)

Doctors want to believe that they will die differently than the rest of the US. Just look at the 2011 essay written by Dr. Ken Murray, "How Doctors Die," that went viral when he described that doctors are more likely to die at home with less aggressive care. To back this belief up, studies have surveyed physicians, who state that they would want a nonaggressive, comfort-based approach to care in the face of life-limiting illness. That’s all well and nice, but do they actually die differently, or do they just say they want to die differently?

Recently, two articles came out in JAMA (and nicely summarized by Pallimed) demonstrating that in reality, doctors don't actually die that differently from others. Today, a new article published by Dan Matlock, Stacy Fischer and colleagues, adds more evidence that our preferences for a different death is unfortunately not well aligned with reality.

The Study

Using Medicare Part A claims data from 2008 to 2010, the authors compared 9,947 decedent physicians and a random sample of192,006 non-physicians. In particular they looked at days in the hospital and proportion using hospice in the last 6 months of life as primary outcome measures adjusted for sociodemo-graphic characteristics and regional variations in health care.

The Results

There was no difference between physicians and non-physicians in the number of days spent in the hospital in the last six months of life (odds ratio (OR) = 0.98, 95% confidence interval (CI) = 0.93–1.04). They were also just as likely to die in the hospital (OR = 0.99, 95% CI = 0.95–1.04) and they were more likely to use ICU or CCU level of care. Physicians did use more hospice care (46% vs 43%) and used it for longer periods of time before death (2.44 more days for physicians). Lastly, the proportion of physicians using hospice 3 days before death was different (8.1% vs 7.5%, P = .03), although it was not statistically significant after adjustment.

Why No Difference?

If you had to sum it up, it looked like physicians used a little bit more of everything near the end of life (more ICU/CCU use, more hospice use), but overall there weren’t really big differences. Just take a look at the hospice use in the last three days of life. The difference in this study was 8.1% in physicians vs 7.5% in non-physicians.

You want to see a big difference? Take a look at the newly released report by the Dartmouth Atlas and the John A. Hartford Foundation. The percentage of Medicare decedents who were enrolled in hospice care within three days of their deaths varied more than fourfold across hospital referral regions in 2012, from 6.1% in the Bronx, New York to 27.3% in Fort Lauderdale. Now that's what I call a big difference.

Another example? Days in the ICU in the last 6 months of life. Physicians vs non-physicians: 3.1 days vs 2.8. Want some real numbers? Again, from the Dartmouth Atlas report, the difference in ICU days in the last 6 months of life varies from 9 days in Miami to 1 day in La Crosse.

And therein lies the rub and something that we have learned the hard way: while doctor’s preferences may be more focused on comfort, these preferences are often less influential than the practice patterns where the care is actually delivered.
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