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by Drew Rosielle

I went into medicine because I thought it'd be something practical, to help people.

I majored in English and Religion at the University of Iowa in the early 1990s, and didn't have clear career plans. I guess I thought I'd become an English professor. Late in my undergraduate days I was enamored with the more experimental sides of 20th Century poetry (Gertrude Stein, Lorine Niedecker) and figured I'd go on to grad school. To make ends meet in college, I got a part-time job cleaning a group home overnight for teenage boys with profound developmental disabilities. I liked to stay up late, and I could clean the house overnight and listen to the BBC World Service. And smoke (gosh I wish smoking cigarettes was a benign activity - so many pleasant memories). In the morning a couple other employees would come over, we'd get the boys up, dressed, fed, teeth-brushed, and off to school.

By my senior year, I was an assistant group home manager, and found myself in the surprising position of really, really liking working with these kids: dressing, feeding, toileting them, helping them do the few things they seemed to enjoy, trying to make meaningful connections with them. The latter was difficult - they all had autism (along with other developmental challenges), and several of them weren't verbal, or were so very rarely.

We played music constantly in the home (mostly for the pleasure of those of us who worked there), and one of my warmest memories of that time in my life was one of the boys seemingly spontaneously coming up to me, grabbing my head and gently bringing my forehead to his as if he wanted to privately confer about an important matter - it was a brief but distinctly intimate gesture - and muttering to me "She's a brick...house," then walking away.

I graduated, traveled, moved up to Minneapolis, got another job working with folks with developmental disabilities, and was contemplating applying to graduate school, when I had a sort of career crisis, and realized I didn't want to be an academic, and instead wanted to do something tangible and practical, that helped people. Undeniably, my experience caring for those boys was critical to my decision. However it wasn't otherwise a well-thought out, or particularly sophisticated decision, and I don't have much insight otherwise into why I decided to try to go into medicine. No one in my family is a doctor, or even in health care.

I wanted to help people, in a straight-forward, material way. It seems naive 20+ years later, but only a little. That human connection I felt with those young men whose lives were very, very different than mine, turned out to be a good guidepost for me.

There are many pleasures to being a doctor. One of the deepest, and most abiding, is the sheer breadth, depth, and diversity of people you meet, and share a form of intimacy. It's a professional form of intimacy, to be sure, proscribed by the duties and obligations and boundaries of our profession, but nonetheless at times profound. You hear about and witness, sometimes glancingly, but sometimes in great detail - deep, important, and very personal aspects of people's lives. Their hopes, joys, failures, traumas, sins, sex lives, fears, weaknesses; their beliefs about what matters most in the universe, what they love the most, what they can and can't live without.

You try not to love or judge your patients too much, you need to stand apart a little, watch them, seek to understand and appreciate, but not love or judge too much, but it's tough not to. There are your patients, and their families, going through things you can only imagine, and it's all just right there in your face, impossible to ignore. 

Doing this, you quickly realize, and are reminded on a near daily basis, that the things you find virtuous, and laudable, and good - poise, grace, pugnaciousness, grit, humor, humility, gratitude, self-sacrifice - know no color, creed, language, gender identity, national origin, income bracket, faith, insurance status, ambulatory status, employment history, etc. Who you are, where you're from, who you love, how you love - these things are important to be sure - but the work of medicine is a constant reminder to me that no one group in this sense monopolizes any of these virtues.

Every door you open, you are constantly, palpably, in the most concrete and non-abstract way,  confronted with the common humanity you share with your patient & their family - the sick and suffering body, the sick and suffering person (and those who care for them). Whether it's the newly arrived Karen refugee, or the Wells Fargo executive with a very bad cancer.

We are mortal humans, we suffer and love, hopefully together, and then we each die.

I'm not religious, but I think I know what some people mean when they describe healthcaring as God's work.

I'm writing this because of the current political scene in the US. Pallimed has avoided politics, at least partisan politics in the US. I personally care a lot about politics, including partisan politics, but Christian and I feel good about that decision to not go there. It's not what the blog is supposed to be about.  But we've always discussed ethics and morality - it's central to healthcare and medicine - our beloved (science-informed!) healing art that has called us to help our fellow mortals. Christian and I have been talking, and we wanted to speak up and be very clear about our moral vision as individuals, citizens, health care professionals, and the founders of this blog we love so much.

We think people in the US can and should and will argue, in good faith, about the best policy solutions to our nation's challenges.

However, we are appalled, and frightened, that seemingly the very fundamentals of our democratic society are being undermined, our democratic institutions are being eroded, and certain cultural groups are being singled out for suspicion and discrimination.

We reject the idea that some people's lives matter more than others. Refugee lives matter too, as do Black, Muslim, immigrant, brown, native, queer, disabled, poor, uninsured, unemployed, addicted, paroled, and imprisoned lives. We should love our neighbors as ourselves, and do the deep moral and internal work it requires to come to grips with the deepest human truth out there - that everyone on this planet is our neighbor. The moral mandate of medicine requires us to stand up and stand with the powerless & the persecuted: they are our neighbors, we all do better when we all do better.

We reject the lie that we don't have the resources or the wherewithal in the US to care for the refugee, the sick, the bereft, the homeless, the dispossessed, the persecuted, the alone, the disabled, the penniless, the waterless.

The US is imperfect, but the balance of powers structure has served us well. Any likely alternative will be a human catastrophe. Elected and public officials are here to serve we the people, the citizens and residents of the US -  all of us.

May we all live knowing true peace and justice,

Drew

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by Drew Rosielle

(This is the last of four posts by Drew on the language we use in hospice and palliative care. You may want to read his reflection on 10 years of practice or his other posts on euphemisms - "Comfort Care," "Palliative Sedation," and "Compassionate Extubation." - Ed.)

"Assisted Death" - So many problems here.

A) To start with, I don't see a need to replace 'euthanasia' or 'physician-assisted suicide' or 'assisted suicide' with new terms. Because those terms have, at the end of the day, well-defined, internationally agreed-upon definitions. The public may not understand those definitions well, true, but the solution to that is educating the public, not replacing the phrases with ones which are less accurate, less precise, more euphemistic.

B) I've seen people claim 'assisted death' to be a synonym for 'assisted suicide' and only suicide, not euthanasia, as well as it being a blanket term for both of them combined. It sort of makes sense as a blanket term - some phrase to capture the practices of medically-assisting death including both euthanasia and assisted suicide. At the end of the day I can live with this use of it, however it is still confusing, and, prima facie, could also be 'interpreted as including medical actions which are not considered to be euthanasia or assisted suicide (deactivating an LVAD, stopping ventilation in a patient with ALS who is totally ventilator dependent, clamping an ECMO circuit). These all involve removing/discontinuing life-prolonging/organ perfusing treatments which the overall biomedicalethical consensus treats as not suicide or euthanasia, which imply actively introducing treatments with the explicit intent of stopping the heart/breathing aka killing.

C) There is the 'optics' argument for removing the word suicide which I understand, suicide is generally considered to be a very bad thing ranging from tragic/horrible to a mortal sin. The proponents of legalized assisted suicide are arguing that it is moral and ethical, therefore it isn't suicide, or shouldn't be called suicide, because suicide is bad. I understand this argument, however I am not persuaded. Again, in part because 'assisted death' is more confusing, less accurate than 'assisted suicide' as above. Maybe 'assisted self-killing' would be better? 'Assisted self-administered lethal ingestion'? 'A terminally ill patient ending her/his life deliberately by taking a prescribed medication which was prescribed to them for the express purpose of ending the patient's life?' Maybe? Not parsimonious, but an accurate description of what you're talking about, without 'suicide.' I guess to me, however, deliberately taking a lethal dose of a drug to intentionally end your life that day, is suicide. That's what suicide means, acknowledging there are many ways of doing it which don't involve prescription medications. And the proponents of assisted suicide are making the argument that it is morally acceptable to do that in certain circumstances, and it is professionally acceptable for doctors to help patients do that. That's an argument one can make, and the proponents of legalized assisted suicide make that argument, but I don't at all see how that's an argument that the action is not suicide. It's an argument that there is a circumstance in which suicide is ethical, justified, moral, and within the scope of medical practice. Proponents, go ahead and make that argument, just don't argue that it's somehow not suicide. Calling it 'assisted death' however just seems to confuse and obfuscate, not clarify.

Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. For more Pallimed posts by Drew click here. 

Illustration Credit: Christian Sinclair CC-BY-SA-NC

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by Judy Thomas, JD

If you ever questioned whether legislation plays a critical role in palliative care and serious illness let me remind you of the year 2009, when “death panels” became a legislative myth so ubiquitous it warranted its own entry on Wikipedia, was recognized as the “Lie of the Year” by PolitiFact.com, and is now responsible for a handful of debunked rumors on Snopes (see this, and this, and this.)

As CEO of the Coalition for Compassionate Care of California—a leading champion of palliative care—I understand how crucial it is keep a finger on the pulse of policy and legislation. In California we led efforts to pass POLST legislation in 2008 (AB 3000—Wolk) and championed the establishment of a pilot palliative care benefit through Medi-Cal in 2014 (SB 1004—Hernandez).

CCCC’s legislative success is due to a combination of establishing and maintaining relationships with policymakers and their staff, keeping abreast of national palliative care initiatives, and forming partnerships with key organizations who help advance our mission.

Care Planning Act of 2015

Even though CCCC’s policy focus is in California, I always keep an eye on national legislation that might impact palliative medicine and serious illness.

Just last week a bill was announced in the Senate that we should all know about: The Care Planning Act of 2015 (S 1549). According to the bill language, S 1549 will:

Amend title XVIII of the Social Security Act to provide for advanced illness care coordination services for Medicare beneficiaries, and for other purposes.

The Care Planning Act would fund advance care planning discussions with doctors, nurses, and other healthcare professionals. Additionally, the legislation would create an Advanced Illness Coordination Services pilot program that offers home-based support of patients with multiple and complex chronic conditions.

This is music to my ears.

The Care Planning Act is supported by a swath of professional associations representing the medical community. The American Academy of Family Physicians (AAFP) recently gave S 1549 a “Big Thumbs Up” on their website.

What do you think?

On June 24, 2015, I will be moderating the #HPM chat on the topic of “Public Policy and #HPM.”

In this chat I aim to get you thinking about a wish list of policies that could help you in your job. We will also talk about the Care Planning Act of 2015, and what is happening in states around the country.

WHAT: #HPM Chat on Twitter
WHEN: Wednesday, June 24, 2015 / 6pm PT or 9pm ET
HOST: Judy Thomas, JD - @JudyThomasJD

P.S. If you live in California and want to get involved with our work in public policy, drop me a line. This year we are keeping our hands full with a bill that would allow NPs and PAs to sign POLST forms under the supervision of a physician (AB 637—Campos), and a bill that would establish a POLST registry in California (SB 19—Wolk).

Judy Thomas, JD, is CEO of the Coalition for Compassionate Care of California, a nonprofit organization that promotes high-quality, compassionate care for all who are seriously ill or nearing the end of life. Together with their partners, CCCC is shaping the future of palliative care at the local, state and national level. As the voice of palliative care in California, CCCC incubates and disseminates models and ideas to improve access to quality care for all people.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tweetchat.com, for ease of following.

You can access the transcripts and analytics of #hpm chats through @Symplur. 

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Just in time for the unofficial holiday celebrating marijuana (4/20), there is a lot more cannabis chatter. President Obama is expressing more support for decriminalization of medical marijuana. The new Surgeon General, Dr. Vivek Murthy, notes that in some medical situations 'marijuana can be helpful.' It made me curious to see what are hospice and palliative care advocates saying about the topic.

Palliative care clinicians are often concerned about access to symptom controlling medications and therapies when it comes to relieving suffering. For example with opioids, you can hear clinicians advocate for access to these important medications, but also recognize the public health risk which comes from diversion and inappropriate/non-prescribed use. Similarly with integrative medicine, you may also hear people in hospice and palliative care advocating for access and use of massage, acupuncture, hypnosis, biofeedback, aromatherapy among others, even though the research may not be strong for any one particular complementary/alternative therapy.

Data accurate as of April 1, 2015

Yet when it comes to marijuana for symptom control, hospice and palliative care as a field is relatively quiet in comparison to these other areas mentioned above, in addition to being much quieter than the 'medical marijuana' and 'recreational marijuana' movements happening across the United States. In Kansas and Missouri, where I currently practice there are no current laws which allow for medical marijuana or recreational marijuana. In a quick search I found hospice organizations in Arizona, Colorado and Illinois advocating medical marijuana use for their patients. So, I'm wondering from those of you who work in states where there is either form of allowed cannabis use, do you see a different level of engagement (e.g., advocacy or prescribing) from local hospices or physicians that care for people with serious illness? Please share in the comments.

If you would like to know more about what hospice and palliative care clinicians are saying about marijuana as an option for symptom control here are links I discovered while researching this post. If you have quality links, please share in the comments below and I will check them out and potentially add them in the original post. All links are open access unless otherwise noted.

• The Use of Medical Marijuana - HPNA position statement (2014)
• Marijuana and health: A comprehensive review of 20 years of research - Oregon Department of Health and Human Services - (2014)
• Legality of cannabis (global) - Wikipedia
• Evidence-Based Approach to Medical Marijuana (PPT) (from NHPCO conference 2014)
• Pallimed review on marijuana in HIV neuropathy (2007)
• Medical marijuana: What should palliative care providers know? - AAHPM Quarterly (2012)
• Cannabis-focused issue of PC-FACS - 8/14/14 (AAHPM Members only) 
• Therapeutic review of cannabinoids - JPSM and www.palliativedrugs.com (2013)

Medical marijuana is not without potential medical risk, especially in a population that may be seriously ill.  There have been case reports of significant Aspergillosis infections of the lung in neutropenic patients, and it is not uncommon to see transplant patients (who are necessarily immunocompromised by their treatment) to be counseled against smoking marijuana expressly because of this reason.

This post is not about taking a side, but instead a reflection on what are our (meta-)responsibilities as symptom control advocates. As we gain a larger foothold in the halls of our hospitals and our statehouses, like Oklahoma who recently passed (ACS-supported) laws that encourage more input from palliative care experts, we need to ask ourselves, "With limited time and resources, how do we help out patients best?"

It seems like the medical/recreational marijuana movement has considerable inertia behind it when it comes to changing state laws. How do you think will this change our clinical practice, our fellow education, and our research opportunities?

Christian Sinclair, MD, FAAHPM, is a palliative care physician at the University of Kansas Medical Center, editor of Pallimed, and president-elect of the American Academy of Hospice and Palliative Medicine. He has a significant interest in questions that don't always have clear answers and likes to be able to hear other people's opinions on challenging topics.

Abbreviations:
HPNA = Hospice and palliative Nurses Association
PPT = Powerpoint
NHPCO = National Hospice and Palliative Care Organization
AAHPM = American Academy of Hospice and Palliative Medicine
JPSM = Journal of Pain and Symptom Management
ACS = American Cancer Society

Image credit: Medical marijuana neon sign by Laurie Avocado Wikimedia Commons via CC

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by Lyle Fettig, MD

You meet a 29 year old man with a history of Diffuse Large B-Cell Lymphoma.*  Palliative care was consulted after he presented to the hospital with lower extremity weakness and was found to have extensive new epidural spread of his disease as well as progression of disease in his chest and abdomen.  He was just diagnosed five months ago.  He started chemotherapy with hopes that he'd respond well enough for consideration of a stem cell transplant.  With documented progression of disease, it has become clear that would not happen. 

He'll die soon.  You look at him, his wife, and two year old daughter and wonder why.  The idiomatic thought springs forth naturally, "What did he do to deserve this?" even if you're consciously able to say "this isn't his fault, he doesn't deserve any of this."

Maybe smoking is linked to lymphoma?  Maybe not.  And anyway, he never smoked. Even if he did, how many 30 year olds who smoke succumb to a similar fate?  A tiny percentage. He occasionally drank alcohol, but never did any other drugs.

Maybe it's some other environmental exposure?  Maybe he was exposed to something at work?  He has worked at a facility that makes medical supplies.  Hmm.  No obviously known exposure risk.

There has to be something.

What drives the desire for an explanation?  The answer to this question is complicated, but here's one factor that may drive the desire for many:

The just-world hypothesis.

People who strongly hold this hypothesis assume the world must be fair and may be more inclined to believe that if something bad happens to you, you must have deserved it somehow. This hypothesis sees suffering and concludes that people who suffer must be the kind of people we disdain.  If the world isn't fair, what bad things might happen to me? If unfairness like this exists, it's scary to confront. One way to avoid this fear is to assume fault of the person who is suffering.

You know the patient cannot be blamed for his lymphoma.  Maybe it can be explained by genetics, a quirk of cancer biology. But what about the 70 year old woman who has lung cancer after a 120 pack-year history of smoking cigarettes?  There's no doubt about the relationship between smoking and lung cancer.  The dangers of smoking continue to be clarified and every public health campaign that reduces smoking rates is a good thing.

Is the non-smoking blamer reassuring himself about his own fate?  "That couldn't happen to me- I have never smoked."  Tobacco contributed, no doubt. Can the blamer, armed with the just-world hypothesis, more easily ignore the fact that up to 24,000 people die in the United States from lung cancer every year without having smoked?

In an unfair world, try not to blame the dying person or try to dispute the person's experience of unfairness.  The lifelong smoker may point to someone who lived twenty years longer while smoking.  It's true that smoking is bad, people should stop for their health, and still some people skate through in spite of it.  So it won't seem fair to many who don't.

Watch out for this bias.  If you have feelings of blame (even if unspoken), examine what the source of those feelings might be for you.  Be gentle with yourself if you discover it might be in response to fear of an unfairness which is universal in potentiality.  Examine your own fears.  Don't let them obstruct a compassionate response to the experience of loss and grief which is a source of the patient's experience of unfairness. 

Aim to non-judgmentally provide safe passage and support to all until the end.  The world will be more fair as a result.

*Any resemblance to real life patients is purely coincidental.

Photo: Justice via Shutterstock

Lyle Fettig is a palliative care doctor in Indianapolis where he lives with his wife and two boys, both who love Funky Bones at the IMA 100 Acre Park. 

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by Phil Rodgers, MD, FAAHPM, Co-Chair, AAHPM Public Policy Committee

(The following is part of a three-post progressive blog about advance care planning, prompted by the Centers for Medicare and Medicaid (CMS) decision not to pay for the new “complex advance care planning” codes in this year's Medicare Physician Fee Schedule. Now is the time to tell CMS why you support reimbursement for these important services! The agency is accepting public comments through Dec. 30 —it’s easy to submit comments online!

Please also see AAHPM Public Policy Committee Co-chair Gregg VandeKieft's update on how key organizations are collaborating beyond AAHPM to make Advance Care Planning efforts succeed. And don't miss out on AAHPM State Policy Issues Working Group Chair Paul Tatum’s GeriPal post where he makes the case that it’s time for advance care planning to become routine for patients with serious illness. - Ed.)

Late on October 31st, the Center for Medicare and Medicaid Services (CMS) published the 1185-page 2015 Medicare Physician Fee Schedule (MPFS). What is the MPFS? If you don’t know, don’t worry—the majority of Americans (including many health care professionals) have no idea this document exists, and until recently I was among them.

In short, the MPFS lays out how Medicare intends to reimburse ‘practitioner’ services for the coming year. ‘Practitioners’ include physicians, nurse practitioners, physician assistants and other professionals who provide ‘qualifying’ services to Medicare beneficiaries. These services are most often described by Current Procedural Terminology (CPT) codes, and valued through Resource-Based Relative Value Units (known as RBRVUs or just RVUs).

I have been fortunate enough to be supported over the past year by the American Academy of Hospice and Palliative Medicine (AAHPM) to serve as their advisor to the AMA’s Relative Value Scale Update Committee or ‘RUC’, which recommends RVU values to CMS for each and every CPT code. In this role, I’ve been able to advocate for the work that HPM professionals do every day, in the process by which those services are described for CMS to determine how much they will pay for them. In other words, HPM has a voice in the process (or ‘seat at the table’, choose your favorite metaphor), in helping CMS understand what it takes to deliver high-quality care for patients with serious illness.

Why should we care? Medicare fee-for-service covers 33 million older and disabled Americans, and in most markets is THE largest payer of hospice and palliative medicine practitioner services. It also often sets payment benchmarks for commercial payers (including Medicare Advantage plans, which cover an additional 14+ million beneficiaries). As a result, the MPFS tells us how and how much HPM practitioners will be paid for a large part of the work they do. So, dense and obtuse as this all may seem, it matters.

The 2015 MPFS matters even more to HPM providers, as it (for the first time) includes Advance Care Planning (ACP) services. These services are described as “…the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed), by the physician or other qualified healthcare professional; face-to-face with the patient, family member(s), and/or surrogate.” While the descriptor mentions ‘form completion’, these codes really cover more substantive discussions about goals of care, treatment options, values and preferences.

The CPT and RUC processes have developed and valued two codes for these ACP services: 99497 (first 30 minutes, valued at 1.50 RVUs) and 99498 (each additional 30 minutes, valued at 1.40 RVUs). They can be billed in addition to Evaluation and Management (E/M) codes, reflecting the ‘separate and identifiable’ (in CPT lingo) nature of more complex ACP discussions.

The ACP codes have a backstory (see Pam Belluck’s excellent piece in the Aug 30 New York Times) that brushes up against everything from ‘death panels’ to a growing number of commercial insurers and Medicaid programs who have already begun to pay for ACP services. In the 2015 MPFS, CMS acknowledged both codes, but stopped short of authorizing Medicare payment for them for 2015 (more on that below).

I want to pause here to acknowledge two things about these codes. First, it is a major step forward even to describe and value advance care planning services, the enormous impact of which is demonstrated by a growing body of research and the daily work of health care professionals who perform them (including many Pallimed readers). Yes, it’s many years too late and still part of a system of many misaligned financial incentives, but it’s an important start. Second, and more importantly, is that support for ACP services is broad and deep within the physician community. The most striking part of my experience working on these codes has been the coalition that formed to advocate for them.

The American Geriatrics Society − which only received a permanent seat on the RUC in early 2012 ­– has taken the lead to organize this coalition, providing staff support for stakeholder societies (including AAHPM) to join forces and advocate for the ACP codes through the RUC process, and in joint communications and face-to-face meetings with CMS. There are big players involved – like the American College of Physicians and the American Academy of Family Physicians which together represent over 250,000 physicians – along with specialty societies like AMDA – The Society for Post-Acute and Long-Term Care Medicine, the American Academy of Home Care Medicine, the American Academy of Neurology , and the American Thoracic Society. The physician leaders from these groups continue to speak eloquently and passionately about caring for patients with serious illness, and specifically about the necessity of high-quality advance care planning.

Now it’s your turn. While Medicare did not agree to start reimbursing the advance care planning codes for 2015, they did signal openness to reimburse them in the future, and invited comments until December 30. Individual comments really do matter to CMS: staffers read every submission, and individual comments are actually cited throughout the MPFS as rationale for payment decisions.

So, it’s time to tell CMS why you support reimbursement for advance care planning services. You do not need to be a physician or even a clinician to comment . A couple of things to consider when writing your comments:

• Tell why you think it’s important to pay for ACP services through a specific mechanism. CMS has suggested that it believes Medicare already pays for ACP services through the Evaluation and Management (E/M) and extended service codes.
• Tell them about the unique value of advance care planning, and how it is ‘separately and identifiably’ necessary in addition to all other services (medical therapy, symptom management, etc.).
• Be specific, be yourself, and write about what you know. It’s OK to reference the literature about ACP services and palliative care, the IOM report, the importance of tracking the frequency ACP is performed, the needs of an older and sicker society etc., but it’s more powerful to speak from personal experience. 
• Tell patient stories that illuminate a connection between high quality advance care planning and better care for your patients. Every HPM professional I know has dozens if not hundreds such stories.  

Now is the time to tell them.

Comments are open until December 30 and can be submitted online.

Don't forget to check out the other two blog posts in our progressive blog party! Click the images below.

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This morning while browsing through my New York Times app (I’m so modern!), I was saddened to see the obituary for Dr. Sherwin B. Nuland, who wrote the impressive and ground breaking 1994 National Book Award winner, “How We Die: Reflections on Life’s Final Chapter” (Amazon Affiliate Link). I know many hospice and palliative care professionals likely have this black and white paperback sitting on their bookshelf. Maybe they picked it up at a used book sale like I did, or maybe it was passed onto them by a mentor, but I wonder how many of the current practicing generation of professionals have actually read this seminal work?

I read it in 2004 when I was a hospice and palliative care fellow and I was so hungry for any knowledge about how to be a better doctor for people at the end of life. It may be hard to believe, but in 2004 there wasn't a lot of readily available information like we have seen in the past few years. The lessons from the book still resonated, even though the book was a decade old at the time I read it.

As a surgeon he recognized that he had been fighting against death and instead over-medicalizing this universal human event throughout his career and was willing to say it publicly and call out the medical establishment for doing the same. The New York Times obituary points out that Nuland himself worked hard to give his brother hope for cure and survival before his death in 1990, which is a familiar story to anyone who has ever cared for a patient with health care professionals in the family.

The book rising to national prominence came when the country was grappling with issues of medical care and control over the end of life. If you know your end-of-life ethics history you will obviously recognize the year 1994 for its significance in ushering the United States first voter approved initiative for physician aid-in-dying with Oregon’s Death With Dignity act. (It was challenged in the courts and did not become implemented until 1997.) It was also not long after the Patient Self-Determination Act (1990) highlighted the need for advance care planning, and other important ethics cases such as Dr. Jack Kevorkian and Terry Schiavo.

His writing diversified but he always foucsed on combining his career of medicine with a little philosophy including books such as The Art of Aging, How We Live, and The Soul of Medicine, in addition to numerous articles in non-medical publications. You can watch him at a very early TED talk from 2003 on the Extraordinary Power of Ordinary Humans. Or watch him talking about his inspiration for "How We Die" and how 'Death was in the legend and lore of my family.'

One passage that stood out to me in my early career is his description of The Riddle. I saw this in myself as a medical resident looking backwards and have seen it since practicing as a palliative medicine doctor.

“Every medical specialist must admit that he has at times convinced patients to undergo diagnostic or therapeutic measures at a point in illness so far beyond reason that The Riddle might better have remained unsolved. Too often near the end, were the doctor able to see deeply within himself, he might recognize that his decisions and advice are motivated by his inability to give up The Riddle and admit defeat as long as there is any chance of solving it. Though he be kind and considerate of the patient he treats, he allows himself to push his kindness aside because the seduction of The Riddle is so strong and the failure to solve it renders him so weak.”

If you decide to pick his book up and give it a fresh look now that it is 20 years old, let me know what you think of it. Maybe we could have a historical book club?

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(Ed. - Please welcome Jennifer Linebarger, MD, MPH, FAAP to Pallimed.  Jennifer joins us and will be helping beef up our pediatrics focus here at Pallimed. We are thrilled to have her! - Sinclair)

I had just begun reading Dr. Danielle Ofri's latest book, "What Doctors Feel: How Emotions Affect the Practice of Medicine", when I opened The New England Journal of Medicine to find David Korones' essay "What would you do if it were your kid?" As he points out, nearly all of us have been asked, have heard this "plea to share with them, as a partner, the heavy burden of decision making." And nearly all of us have squirmed in our seats a little each time.

I still remember the child in the ICU, sedated and on a ventilator as her parents waited for the fungus in her lungs to clear. The note on her door said, “Docs, if ‘Plan A’ didn’t work, the alphabet has 25 more letters! So stay cool.” Yet, the infection was persistent, and her parents were asked to decide – continue as is, perform surgery to remove the fungal ball, or to withdraw the ventilator support and keep her comfortable as she died. The whole team gathered with the parents – the ICU doc, the BMT primary, the infectious disease specialist, the cardiothoracic surgeon, and me, the palliative care doc. The options were presented. The table fell silent as the parents processed the decision before them. Then the father asked, “What would you do?” And after a few furtive glances, one-by-one every provider around that table shared their opinion.

There was not a unanimous response from the providers at the table. But everyone sat with the parents as they faced a heart-wrenching decision. Two years after her death, her parents sat before a group of second year residents and reflected on that family meeting, and on the empathy they felt. It buoys them on their waves of grief to this day.

While the word "empathy" does not appear in Korones’ essay, I think it is at the heart of everything he says. Perhaps it is because I was reading Ofri’s book, and on page 48 she explains,

“Empathy is a cognition, a thought process that allows you to understand the patient’s feelings while not necessarily feeling them yourself… and the empathic doctor needs to be able to clearly communicate that understanding” (p48).

When a patient or a family member asks, “What would you do?”, they are inviting empathy.

1. Korones DN (2013). What would you do if it were your kid? The New England Journal of Medicine, 369 (14), 1291-3 PMID: 24088090

2. Meyer EC, Lamiani G, Foer MR, Truog RD (2012). "What would you do if this were your child?": practitioners' responses during enacted conversations in the United States. Pediatric Critical Care Medicine 13 (6) PMID: 23034458

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Rolling into work this morning, NPR reported on a radical change in organ donation policies which could profoundly change how palliative care is perceived and how families and health care professionals make those very challenging decisions at the end of life.  At the heart of the effort is an attempt to increase the number of organ donors of course but the ethical question is in how to achieve that noble goal. Among the changes under consideration is the ability for hospitals and organ procurement organizations (OPOs) to make their own policies on how to approach families and patients about organ donation instead of following national guidelines.

I've have worked with OPOs in the hospital setting and have had overall some very good professional and ethical experiences.  But allowing too much individual variation could lead to abuses of the system which would negatively impact patients and families.  Why wouldn't their be best practices from which all the sites could rely on? To go from national standards to individual policies that could be unduly influenced seems to be a regression of ethics.

There must always be a clear line between the clinical team treating the patient and the team with the skills and ability to harvest organs from a deceased patient.  That has been a long held standard of transplant ethics and is reinforced in the story by a bio-ethicist, Dr. Stuart Youngner.  In the audio version of the story (not the print version) Dr. Youngner also mention that in one hospital he works with the organ transplant team tries "to be introduced to families early, not as organ procurement organizations but as end-of-life care specialists."

Hello!  Alarm bells?!  Palliative care teams need to be very aware of this potential and need to talk to OPOs and their transplant teams about this potential blurring.  We need to have cooperation and discussion to make sure we are collaborating but again a firewall is needed to protect the patients currently under our care.  I think there are several ways hospice and palliative care can work with OPOs.  National Healthcare Decisions Day and advance directives for starters? Interestingly I could not find anything more than this NPR story about the UNOS meeting today and tomorrow.  There is an open session and I for one would be very interested in the outcomes.

If you have experiences as a palliative care professional (hospice or hospital) with OPOs, please share them in the comments below.

Coda
After listening to the article I also have two tips for any journalists covering stories like this:
1. Avoid phrases like 'increasingly popular' when describing organ transplant methods.  This isn't a homecoming contest.
2. Do not say 'discontinue care.' Care is never stopped.  We always keep caring.  Technology and treatments can be stopped, but never caring.

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The wait was too long.  We had to change plans.

I arrived home late after a long day at work and my wife asked if I wanted to go to that new restaurant everyone had been talking about.  We hopped into the car and drove off, not really thinking about a reservation.  We both groaned when the restaurant came into sight and we saw throngs of people waiting outside.  "Maybe it's not as bad as it looks," I said as I jumped out of the car to check, only to find out there was a 90 minute wait.  As I walked back to the car, I had already made up my mind to go down the road to an old standby.  My wife readily agreed without any deliberation.  Relief of hunger superseded novelty as we made a restaurant selection.

Of course, choosing a restaurant on a Friday night is nowhere near as complex as medical decision-making.  We had the opportunity to choose between two appealing restaurant options with guaranteed good conversation at either place. Patients sometimes choose between seemingly "bad" and "worse" options.  How might the decisions be similar, though?  When the rubber meets the road and we actually have to make a decision, the facts and assumptions surrounding the decision might have changed, which may affect the decision.

Think of a 78 year old woman with advanced COPD recently referred to hospice.  She falls walking to the bathroom and fractures her proximal femur.  She presents to the emergency department and undergoes evaluation by an orthopedic surgeon who raises the option of a percutaneous fixation of the fracture.  The patient says she does not want any surgery.  She has decision-making capacity.  Palliative medicine is called to admit the patient to the palliative care unit.  Further discussion with the patient reveals that she has always said she would not want surgery because her husband died shortly after a major vascular surgery ten years ago.  She's worried about going to a nursing facility even if she survives, and though she was told otherwise, wonders if perhaps the fracture will just heal on it's own over time.  The palliative med physician further explores concerns and discusses her likely prognosis with or without surgery.  He reassures her she will most likely be able to go home after surgery since she has excellent caregiver support and since it's anticipated she'll be able to bear weight on the leg very soon after surgery.  Together, a decision is made to reconsult orthopedics and proceed with surgery.   

The woman arrived with a set of assumptions which weren't 100% accurate, partially driven by fears derived from past experience.

What about when the patient doesn't have decision-making capacity?  If you're fortunate, the patient will have spoken in depth with their surrogate and will have completed an advance directive which can serve as a guide as you make decisions.  While helpful, living wills are often times written in vague language which may be difficult to interpret. POLST can help with specificity of preferences, but even then, it may have been completed based on a set of assumptions which might have changed.

What do you do when one decision seems to be in a patient's best interest, yet the patient's advance directive points towards another decision?  In an article published in JAMA Internal Medicine, Alex Smith, Bernie Lo, and Rebecca Sudore describe a framework to tackle this challenging dilemma and demonstrate in two cases how to use the framework. 

Here are the questions they recommend asking yourself:

1. Is the clinical situation an emergency that allows no time for deliberation?  
2. In the view of the patient's values and goals, how likely is it that the benefits of the intervention will outweigh the burdens?
3. How well does the advance directive fit the situation at hand?
4. How much leeway did the surrogate provide for overriding the advance directive?
5. How well does the surrogate represent the patient's best interest?

In the article figure, they describe how the answer to each question might tilt the scale towards following the patient's advance directive versus going against the advance directive in support of a "best interest" decision for the patient.  For instance, if your patient is a veteran and has indicated on a standard VA advance directive a wish for their surrogate to use the advance directive as a guide, this would tilt the decision towards the best interest of the patient, even if it seems to conflict with the advance directive. Once weighing how each question tilts the scale, you will hopefully be in a better position to resolve the dilemma.

I'm glad the authors have drawn attention to this dilemma.  The advance directive can inadvertantly be a conversation stopper, i.e. "Well, the living will says such and such, so I can only assume that they would/wouldn't want such and such."  What's the number 1 pearl for successful palliative care consultation, though? Assume nothing, ever.  Don't anchor to the wrong goals of care, or assume the patient doesn't have mixed goals of care.  The proposed framework invites providers to use the advance directive as a conversation starter, especially when it doesn't seem to make sense.    Explore your intuition with curiosity, or else you might end up in Abilene with your patient and their family along with you.  (Apologies to those readers from Abilene- I'm sure it's a lovely place.)  Remain open to the possibility that the advance directive made sense all along and you were the one with the misassumptions.

Just like any medical decision, patient centered goals of care should be at the center of any framework.  At the heart of the dilemma is the question, "what do you do when a treatment does/doesn't contribute to the patient's goals of care yet the patient's advance directive seems to indicate you should do the opposite?"  Question two of the framework carries significant weight, and in fact, should serve as the basis for deciding what is in the patient's best interest.  A circumstance might still arise where you go along with an advance directive which seemingly contradicts one of the patient's goals of care (e.g. emergently intubating a patient with a very poor prognosis when the patient has selected intubation and related interventions on a POLST form).  In that event, it makes sense to quickly delineate a time-limited trial of therapy and reevaluate progress overtime as benchmarked against the patient's goals of care.

A few words of caution.  Jurisdictions vary with respect to how much leeway surrogates may have.  Be aware of applicable statutes and the fine print of the directive.  If the directive prohibits leeway, yet you and the surrogate both feel strongly that a contradictory decision is in the patient's best interest, then carefully consider the options.  Consider meeting with other family (along with the surrogate) to review the decision.  Consider an ethics consultation and/or discussion with your legal department.  (For the reasons above, I'd much prefer if standard forms "nudged" people towards permission of leeway, making it the default option yet giving people the option to write out specific decisions which are inviolable.)

Lastly, the "scale" in the article's figure best fits a scenario where an advance directive indicates a preference against medical intervention yet the provider thinks intervention might be in the best interest of the patient.  This slightly limits the generalizability of the figure, making it a little harder to apply to a circumstance where a directive indicates a wish for intervention yet the provider thinks the intervention would not be in the patient's best interest. With this small weakness aside, I think the authors ask the right questions and one can easily extrapolate the model scale when needed.

What do you think about the framework?  Join the conversation below or at Geripal.

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(A hearty welcome to Emily Riegel, MD (@emriegel) a Med/Peds physician who completed a hospice and palliative medicine fellowship a few years ago and is now at KU Medical Center helping lead pediatric palliative care in Kansas City.  Emily is a keen observer who could easily be writing the great next medical drama on TV, but until then I'm happy she is contributing to Pallimed - Sinclair)

In the March issue of Pediatrics,  Jonna D. Clark, MD, and Denise M. Dudzinski, PhD, take on the audacious task of encouraging pediatricians to step into the role of decision maker for terminally ill children and, in doing so, help alleviate the burden of  making decisions regarding CPR from the shoulders of parents. In “The Culture of Dysthanasia: Attempting CPR in Terminally Ill Children,” Clark and Dudzinski call into question the practice of requiring the “opt-out” approach to CPR, and state that this “fails to appreciate the nuances of the special parent-child relationship and the moral and emotional complexity of enlisting parents in decisions to withhold CPR from their children.” The authors then provide two tenets on which physicians ought to base this action of taking over decision making for the parents of terminally ill children.

Clark JD, and Dudzinski DM (2013). The culture of dysthanasia: attempting CPR in terminally ill children. Pediatrics, 131 (3), 572-80 PMID: 23382437 (Subscription Req'd)

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Case: Mrs. P was a 92 year old woman who was admitted to the acute care hospital from her nursing home with decreased mental status. She was found to have pneumonia, and though her infection improved with antibiotics, her mental status did not recover and she continued to be only slightly responsive to her family, unable to eat or interact. On the sixth day of hospitalization, palliative medicine was consulted to help the family with decision-making. By the time the palliative care consultant saw the patient, a temporary feeding tube had been placed, and the family had reached consensus on a trial of artificial feeding to give her a chance to regain strength, though they acknowledged that her prognosis was poor.

The next day, the patient was still unable to communicate, but was moaning and grimacing. She repeatedly tried to cough weakly to clear the copious secretions in her upper airway. The palliative care consultant recommended low doses of intravenous morphine to treat pain and shortness of breath, with a medication to clear secretions. However, Mrs. P’s attending physician was concerned that treating pain with opioids would cause respiratory depression and lead to Mrs. P’s death. The next night, the bedside nurse charted several times that Mrs. P was screaming, but they were only able to give her Tylenol for pain; she required wrist restraints to prevent her from pulling out her feeding tube. The palliative care physician was haunted by the image of the dying 92 year old woman, tied down and denied treatment for her suffering.


Discussion: Moral distress occurs when the clinician knows the appropriate action to take, but is unable to carry it out, and feels forced to give care contrary to her values. It is more often described in the nursing literature, but is beginning to come to the awareness of physicians as well. Moral distress often occurs in end-of-life situations when the decision is made to provide aggressive life-sustaining treatments that are felt to put excessive burden on patients and families.

Clinicians who see patients at the end of life may be particularly vulnerable to moral distress. For those of us who serve as consultants, our involvement in a case is at the discretion of the attending physician. In cases such as Mrs. P’s, we feel constrained by our role as advisors to the consulting physicians and the expectation of professional courtesy towards other physicians’ decisions. When we serve as attending physicians ourselves, our ability to relieve patient suffering may be limited by the family’s preference that every possible life-sustaining measure be taken.

Moral distress is also a common problem in the nursing field, particularly critical care nursing. For clinicians in any of these roles, moral distress arises when the system or other people interfere with our ability to relieve a dying patient’s suffering.  In the nursing literature, moral distress has been shown to contribute to decreased job satisfaction and to burnout. The American Academy of Critical Care Nurses recommends addressing moral distress with a four-step process:

• Ask: You may not even be aware that you are suffering from moral distress. Signs of moral distress may include physical illnesses, poor sleep, and fatigue; addictive behaviors; disconnection with family or community; and either over-involvement or disengagement from patients and families.
• Affirm: Validate the distress by discussing these feelings and perceptions with others. Make a commitment to caring for yourself by addressing moral distress.
• Assess: Identify sources of your distress, and rate its severity. Determine your readiness to act, and what impact your action would have on professional relationships, patients, and families.
• Act: Identify appropriate sources of support, reduce the risks of taking action when possible, and maximize your strengths. Then you may decide to act to address a specific source of distress in your work environment.

In Mrs. P’s case, the consultant discussed the case with the interdisciplinary team, receiving support for her concerns. Despite fear of negative repercussions from the primary service, she called the patient’s son herself and gently explained the signs of suffering that Mrs. P was showing. He agreed that his mother should have low-dose morphine. The primary team added this order without any expressed objections to the consultant stepping over her boundaries. Mrs. P died a few days later.

References
1. Weissman, D. Moral distress in palliative care. Journal of Palliative Medicine. October 2009, 12(10): 865-866. (Sub Req'd)

2. Gallagher, A., (March 21, 2010) "Moral Distress and Moral Courage in Everyday Nursing Practice" OJIN: The Online Journal of Issues in Nursing Vol. 16 No. 2. (Open Access)

3.Meltzer LS, Huckabay LM. Critical Care Nurses' Perceptions of Futile Care and Its Effect on Burnout. Am J Crit Care May 2004 13:202-208(Open Access)

4. The American Association of Critical Care Nurses. The 4 A’s for managing moral distress. (Open Access)

Additional Resources:
"Moral Distress in Palliative Care Teams" presentation by Dr. David Weissman
Medical Futility Remains Leading Cause of Moral Distress among Nurses via Medical Futility Blog