Wednesday, September 20, 2017

Preparing to Show Up: Writing Practices that Serve

by Jennifer Wilhoit

Several months ago I wrote a piece for this blog about nature practices we can do in hospice settings, and when preparing for visits with families and people who are dying. I stressed the vital importance of self-care as we serve individuals with such acute and ever-changing needs. I also reminded the reader that we do not engage our hospice work in a vacuum, but as ordinary humans ourselves with the vagaries of everyday life pressing in on us. We show up to our families and friends; we show up to those we are called to serve in hospice contexts. But how well do we remember to show up to ourselves with sustained attention, presence, deep awareness to physical, emotional, mental, and spiritual needs before we burn out? How well do we attend to ourselves on a daily basis so that compassion fatigue does not catch up with us?

I have been a hospice volunteer for nearly twenty years, while also serving the deep needs of people in transition through my private professional practice as a spiritual ecologist/author who guides individuals and groups through healing, nature-based writing support to meet their unique needs. What I’ve learned through my work is that showing up in a deeply present, engaged, dynamic manner is not only essential for those I serve, but also crucial for myself. We need to maintain a daily connection to fluidity in our lives, being nurtured, inspired, and open to insights. One way I have learned to do so for myself and for my clients, is through writing. So this second article I’m offering in this series looks at simple writing practices that serve both ourselves and others.

Essentially, the practices that follow can be:
1.) rejuvenating,
2.) quick and convenient,
3.) private and sacred,
4.) process-based rather than outcome-driven (and sometimes messy).

We can do any of these practices without much preparation in a moment when we feel depleted, enervated, or in need of clarity.

As I wrote in the first article of my series, these practices are not intended as a panacea, but rather as touchstones of writing that sustains us. These practices can also be used, with modification, directly in our daily interactions with those we serve. I recommend opening up a pause in your schedule and routine. I have done many of these within moments of my next client appointment, or around the corner from the next hospice family. I do them in my car, on my lap on a park bench, in the bright early dawn at home, just before tucking myself in bed at night.

All of these small, simple acts can restore us, thus allowing us to really show up to ourselves as well as to those we serve. I offer them in three categories: practices that nurture, practices that inspire, and practices that offer insight. The most important thing to remember is that these are intended to be for you. There is no standard of quality, or prescription for “good writing.” Any writing will do. This is about process.

Writing to Nurture
For you:

  • Journal about something that adds pleasure to your life.
  • Make a list of activities that help you feel a strong sense of well-being. Select one to do this week.
  • Take five minutes at the end of every workday to quickly write about tense situations from that day.
For those you serve:
  • Offer to help a patient write a letter to a loved one.
  • Suggest free-write journaling to patients, friends, or family as a means of self-care.
Writing for Inspiration
For you:
  • Write a poem. Or handwrite an inspiring poem by someone else.
  • Take a beautiful quotation and post it near your work area, carry it in your bag, or place it on your dashboard.
  • Write out some prayers, mantras, or meditative phrases that help center you.
  • Take your pen and paper outside to a comfortable place in nature. See what arrives on your page.
For those you serve:
  • Offer blessing cards to people you frequently encounter at work. These can be as simple to make as writing one affirming word on a small piece of colorful card stock (i.e., “peace,” “comfort,” “blessings,” “warmth” …”).
  • Share a short piece of beautiful writing with a coworker, family, or patient.
Writing for Insight
For you:
  • Free-write for fifteen or twenty minutes about possible solutions to a problem you face. Do not edit your writing. Allow any possibility (even outrageous ones) to show up on the page.
  • List for yourself the most impactful hospice situations you’ve faced in your career.
  • Write down a few ways that you can use writing to be more effective at work.
  • Write down a story about a time you felt especially motivated.
For those you serve:
  • Write down for family members a short task list or patient care suggestions.
  • Offer families a blank journal/notebook in which friends can record visits, share memories, or paste photos.
The work we do on behalf of others—even out of passion and clear calling—does require a lot of us. Please try these easy practices. Their power lies in repetition, hence the word “practice.” Test out one on a daily basis; or try several over the next week. Modify them to suit your work schedule. Most of all, adapt them to best meet your individual, nuanced, fluctuating needs from moment to moment.

So many blessings to you as you journey through your inner/outer landscape in service to the families who so very much need you.

Jennifer J. Wilhoit, PhD is a writer, spiritual ecologist, & longtime hospice volunteer. She founded TEALarbor stories through which she compassionately supports people's deep storying processes. She lives on an island in the Pacific Northwest. You can find her on Twitter at @TEALarbor.

All photographs in this story are copyright @TEALarbor Stories.

Wednesday, September 20, 2017 by Pallimed Editor ·

Monday, September 18, 2017

“Going Palliative” is Not a Thing

by Staci Mandrola

I love the segment on Last Week Tonight with John Oliver called “How is this still a thing?” His snarky Britishness targets everything from the Sports Illustrated Swimsuit issue to ‘Why do we dress up as other races?’ The skits start out funny but leave you questioning and unsettled.

I hope “going palliative” ends before it shows up on “How is this still a thing?” How do I know "going palliative" is a thing? The phrase is popping up in the academic medical center where I practice palliative care. [And many other hospitals too - Ed.] PT/OT has signed off patients who have a palliative consult ordered (not completed). MDs and APRNs call to ask why their patients are still receiving disease-directed treatment when they “went palliative” last week. Nursing staff asks if they need to continue accuchecks because Ms. A is “going palliative.” Social workers ask why Mr. C hasn’t transferred to the hospice inpatient unit because he “went palliative.”

Aaarrgghh.

“Going palliative” became a thing because hospice became a bad word. Hospice is a synonym in the hospital for dying that makes patients and healthcare professionals upset. We are Americans and we battle through adversity. We praise John McCain for his fighting spirit that will help him beat his cancer. Then we temper the language of courage because we know that none of us will ultimately win the battle. In our hospital, palliative has become a four-syllable bait-and-switch for hospice. And now they have figured it out. When you’re “going palliative”, people use it as code for hospice.

Nope.

Hospice care is for patients who request primarily comfort focused care with the desire to remain in a home-like setting and avoid a medicalized death while having expert management of distressing symptoms. They choose to elect their Medicare Hospice Benefit which is predicated on a physician certifying a prognosis of less than six months. They and their loved ones receive equipment, medication, psychosocial/spiritual care, nursing care and 24-hour support that is a phone call away.

Palliative care is for patients with any prognosis. It can be hours, but it is just as likely to be years. It runs right alongside disease-directed care. Our palliative team consulted on a twenty-year-old battling opioid addiction who needed treatment of severe headache, nausea and dizziness after a motorcycle accident. Our team consulted with a ninety-year-old man who wanted full disclosure of the risks, benefits and alternatives to an open aortic valve replacement. He is alive five years later.

Palliative care manages distressing symptoms at any stage of life and illness. Palliative care provides social, emotional and spiritual support to patients dealing with serious illness and their families. Palliative care helps patients determine what gives their lives meaning and how available medical treatments support or prevent them from continuing to make that meaning.

Palliative care is not an "either/or" choice. It is a “both” choice.

And yes, palliative care may still recommend hospice care when it is appropriate based on that patient’s goals and prognosis.

Why not change our name to “quality of life” care or supportive care? Eventually, healthcare professionals would ask why Ms. A needs accuchecks because she is “going quality of life” or “going supportive.”

“Going palliative” is not a thing. Most palliative care teams won’t employ John Oliver’s brand of snarkiness. But if we don’t continue to educate our colleagues, “Going Palliative-How is this still a thing?” is right around the corner.

Please visit PalliativeDoctors.org for an in-depth look at palliative care, hospice care and the team approach.

Staci Mandrola (@drstacim) is a wife, mother, grandmother and palliative medicine physician who practices in Louisville, KY. Her husband John writes about cardiology and sometimes palliative care issues at Dr John M.

Monday, September 18, 2017 by Pallimed Editor ·

Monday, September 11, 2017

Privilege and Palliative Care

by Denise Hess

An American pastor recently visited Australia and encountered a curious practice. At the start of meetings, any kind of meeting not just religious ones, she found it is common practice to begin with what is called an “acknowledgment of country.” According to reconciliation.org.au:

An Acknowledgement of Country is an opportunity for anyone to show respect for Traditional Owners and the continuing connection of Aboriginal and Torres Strait Islander peoples to Country. It can be given by both non-Indigenous people and Aboriginal and Torres Strait Islander people.
And it goes something like this:
“I’d like to begin by acknowledging the Traditional Owners of the land on which we meet today. I would also like to pay my respects to Elders past and present.”
I happened to hear this story from that American pastor the same week of the Charlottesville protests and counter protests, and the same week I watched the HBO adaptation of The Immortal Life of Henrietta Lacks. These events made me think again about the role of race in palliative care.

In over a decade of working in palliative care, I can say with confidence that I have never met an all-out “racist” palliative care physician, nurse, social worker, or chaplain. However, everyone of us has biases, prejudices, preconceived ideas of how people “should” act and what they “ought” to do, and we carry these biases with us wherever we go. Awareness helps, efforts to counter bias help, but we cannot rid ourselves of bias.

For example, I don’t think I am alone in noticing that I have pre-conceived ideas and expectations about how a patient or their loved ones will respond to palliative care interventions based on their cultural and ethnic background. This is bias. We are all infected with it.

Also, many of us have been given an unearned advantage, by accident of birth, called privilege, that
opens doors we didn’t even realize were closed to others. Privilege is as invisible as air unless you don’t have it and want to breathe. For example, whites and people of color are likely to have vastly different experiences of serious illness and palliative care. As has been well documented by bright minds among us1, people of color tend to receive a lesser-quality version of palliative care2 after receiving less preventative care, later diagnosis, and more challenging access to curative care in the first place.3

As a white woman, if I were diagnosed with a serious illness, I would likely receive high quality palliative care, assistance with advance care planning, excellent pain and symptom management, and help to die in the place of my choice. As a person of color, I may not receive any of the above.

The excellent health insurance I have is the result of the job I have, which is the result of the education I have, which is the result of the family I have, which is the result of the access they had to jobs, education, and opportunities, which is the result in large part of where they were born, when they were born, the color of their skin, the color of their eyes, the texture of their hair. Without those things, I could be without quality health insurance, showing up in the emergency room for primary care. Chance of birth is the source of my privilege.

To add to that, we are all part of health care systems that have institutionalized, operationalized, and standardized racism as part and parcel of their business models. Racism is embedded within the very fiber of organizations and shows up as disparities, lack of access, uneven quality, poor care coordination, and lower patient safety outcomes.

So how to respond? White guilt is not the answer. White guilt makes me the subject and people of color the object once again. White guilt only changes optics, not practices, and definitely not institutions or systems. However, using privilege for the benefit of others can help. Using our voices and our influence over organizations on behalf of those who have been shut out or excluded from various tables of influence can effect change. But even better, using our privilege to lift up the voices of people of color is an excellent step in the right direction.

“But,” I hear you say, “I am a busy (fill-in-the-blank-doctor-nurse-social worker-chaplain), I don’t have time to use my voice to change the system. I’m just trying to finish my documentation!” Fair enough. Yet, spending the currency in our bank of privilege on behalf of others does not have to (but absolutely can) include protest marches, trips to Washington DC, or even visits to the C suites. We can spread our wealth of privilege in simple yet powerful acts like our friends’ in Australia “acknowledgment of country.” Here are a few palliative care possibilities:

  1. Include a person of color in a case presentation as a “positive” example, e.g. not “noncompliant,” “resistant to palliative care,” “opposed to advance care planning.”
  2. Increase your cultural curiosity and competence through relationships with those outside your cultural group.
  3. Read Between the World and Me by Ta-Nehisi Coates, The New Jim Crow by Michelle Alexander (as a start) or watch the film 13th, or I Am Not Your Negro and discuss as a team.
  4. Assess your team’s cultural reach. What groups are over/underrepresented in your patient census based on your local demographics?
  5. Inventory your language. Notice where and when you use terms such as “difficult” patient or, “resistant” family, or when you go into a family meeting with the expectation that the family will "want everything done.”
  6. Watch for “acknowledgment of country” moments when meeting with patients and their loved ones. Are there opportunities to name the ways disparities may be impacting a patient’s situation? Was care difficult to access? Was quality of care poor? Talk about it.

These micro-non-aggressions and micro-extensions of our own privilege on behalf of others are not insignificant. We do not need to be the “white saviors.” We do not need to lead the charge to eradicate racism from our institutions. That would be appropriation. We need to be allies, learning from the experiences of person We need to be allies, learning from the experiences of persons of color, always stepping aside to make room for the neglected voices that need to be heard and honored."

Denise Hess MDiv, BCC-HPCC, LMFT is a palliative care chaplain and marriage and family therapist who currently serves as the Executive Director of the Supportive Care Coalition. She is currently on a quest to try all the donuts in Portland, Oregon.

References
1 Johnson KS. Racial and ethnic disparities in palliative care. J of Palliat Med 2013;16(11). Open Access PDF
2 Welch LC, Teno JM, Mor V. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005 53(7).
3 2016 National Healthcare Quality and Disparities Report. Rockville, MD: Agency for Healthcare Research and Quality; July 2017.

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Monday, September 11, 2017 by Pallimed Editor ·

Tuesday, September 5, 2017

How HBO's The Leftovers Parallels Our Work in Palliative Care

By Shayna Rich and J. Maggio


The HBO show The Leftovers has a deceptively straightforward science fiction premise: What happens to people left behind after a Rapture-like event? The Rapture is an apocalyptic event prophesied in the New Testament where people chosen by God disappear into Heaven. In the show, roughly two percent of the world’s population--about 140 million people--mysteriously disappear in an instant. Unlike the popular Christian book and film series Left Behind, The Leftovers is agnostic to the cause of the sudden departure. Some characters believe it was the Christian Rapture, but other characters disagree.

The show never offers an explanation. By using the second-person narrative style, the show revels in the ambiguity of the departure. This ambiguity reflects the way the characters process the event itself.  Was it a scientific or a spiritual event? Why did their loved ones leave? Why did the remaining stay? What does it mean? Where did they go? Whereas pulpy fiction would dwell on that last question--where did they go--The Leftovers is brave enough to tackle the bigger issue: What does it mean? The series is about people trying to find meaning in their confusion, grief, and loss. It occasionally leaps into sci-fi tropes, but it never forgets its mission to examine a world filled with seemingly random and meaningless loss. Since the show is rooted in its desire to find meaning in the context of loss, the viewer is forced to grapple with the power of loss.  Given this theme, The Leftovers often struggles with the same question that we do in palliative care-- how do we help people cope with grief?

Every episode of The Leftovers focuses on one character and it shows how that person copes with loss, either past or anticipated, and struggles to find meaning. Characters ask “Why did this happen to me?” And much as it is for a dying patient, the answers vary. One character, the long-suffering Reverend Matt Jameson, compares himself to Job, a Biblical character who is continuously tested in his belief in God with numerous trials. Matt and other characters insist that God must have purpose in their suffering. Some lose faith or blame themselves. Some even join a cult. But all prefer the certainty of an explanation over the abyss of the unknown. For example, Matt Jameson talks to a man claiming--with some credibility--to be God. Matt wants answers! Yet he struggles to find meaning, even in his conversation with “God.” Likewise, in our work as palliative clinicians, we see the search for meaning every day. Patients seeking a reason for why they were diagnosed with a serious or terminal illness may struggle with their spirituality and their belief in God. Patients often blame themselves if they cannot find a definitive cause of their illness. They may ask us if this happened because of their diet, their smoking habits, or their genes. Patients want a reason, a story to determine a meaning for their suffering.  Regardless of the story, any reason is always more satisfying than not knowing why you or a loved one is dying.

Like the narratives patients often impose upon their illness, The Leftovers is about the stories people tell to make sense of loss. For most people, it is unsatisfying to view the world as a set of unconnected, random events, and evidence shows that people process the world with narrative. The show focuses on how people choose which story to tell, how they treat others’ stories, and our willingness to impose a story on our lives even if it conflicts with logic, experience, or life events. Nora, a character whose husband and two children all disappeared, struggles with the feeling that she does not want to invent a story for what happened unless it is scientifically accurate. The finale of The Leftovers ends with Nora stating “I knew that if I told you what happened that you would never believe me,” followed by another character responding “I believe you.” Her willingness to accept that others can believe her story without proof, represents her growth over the course of the show. Similarly, in palliative care, much of what we do is provide a sounding board for stories. We listen to patients and family members tell stories of how they were told about their diagnosis, what treatment has been like, and what they have been going through in hospitalization. We encourage our patients and families to do life review and make meaning from their lives by telling stories. And much of the support we provide takes the form of listening and believing their stories. The Leftovers emphasizes the value of that support, especially when the truth is unclear or ambiguous.

Cultural critics examining The Leftovers grapple with this ambiguity of truth in their reviews. The show also gives critics permission to explore their own experiences of loss.  Even normally stoic critics like Alan Sepinwall open up about their personal lives and how the show shaped their personal grief. Critic Matt Zoller Seitz’s review of a season 2 episode discussed how The Leftovers connected to his feelings of loss as a widower. Seitz's article even inspired the show’s co-creator Damon Lindelof to write a subsequent episode dealing with grief, loss, and belief in God.  Most beautifully, critic Mo Ryan's article "'The Leftovers,’ Life, Death, Einstein and Time Travel" connects The Leftovers with her complex feelings toward her dying parents, especially her mother’s death from Huntington’s Disease. It has been shared through social media, causing many tears.

The Leftovers not only echoes the concerns of our patients and their caregivers, it also actively helps viewers process their own losses. It is a profound discussion of loss and pure grief. As with much of our work in palliative care, though, it is leavened with humor. The Leftovers is the type of show where Matt Jameson, dying of cancer, argues about suffering with a character calling himself “God,” but it is also a show where he watches "God" be eaten by a lion. Like most art works asking "big" questions, The Leftovers revels in both the wonders and terrors of the mysteries of life.

Shayna Rich, MD, PhD is a doctor who just completed her palliative medicine fellowship and is starting work at Haven Hospice in Lake City, FL. J. Maggio, JD, PhD is her husband, political science professor, and a passionate aficionado of the philosophy of pop culture.

Tuesday, September 5, 2017 by Pallimed Editor ·

Monday, August 28, 2017

The Role of Hospice and Palliative Medicine in Education

By Meredith MacMartin
One of my first memories from medical school is of my anatomy professor lecturing us on the role and responsibility of the physician as teacher: “the word doctor comes from the Latin word docere, meaning to teach”. I hadn’t considered that when I applied to medical school, and at that point in my education had never imagined myself as a teacher. As I progressed through my training, however, I came to realize that the act of teaching was not only satisfying but was, in fact, one of the best ways for me to learn. I served as a chief resident for my internal medicine residency program and found that more than anything it was a teaching fellowship, and I loved the experience of facilitating morning report and the one on one mentoring of younger residents.
As a palliative care specialist, the opportunities to teach have multiplied. As clinical faculty, nearly every encounter I have with a patient and/or family includes at least one learner, whether a medical student, resident, or one of our fellows. The subject matter that I teach on a daily basis is broad, ranging from principles of pain management to hospice rules and regulations, and from the basics of how to communicate bad news to the subtleties of conflict resolution and medical decision making in the setting of serious illness. It’s not just the learning topics that vary: we teach in a multitude of venues, from the bedside, to informal case-based discussions in our conference room, to lectures and facilitated simulated patient encounters.
As I have gained clinical experience and developed as an educator, so too has our specialty been evolving. When I completed fellowship, I had a clear sense of responsibility to teach the learners in our section about palliative care topics. Over the past few years however, I have felt increasingly that our field has an important role to play in educating the medical field as a whole not just about the importance of good communication, but also in how to actually communicate effectively and efficiently. This is not to say that we are the only experts in medical communication, but certainly given that it is one of the main focuses of our training we should be actively involved in shaping the state of the art going forward.
As the academic year has just kicked off, this month our #hpm Tweetchat will focus on communication training, within the field of hospice and palliative care and beyond. Join us for an inclusive discussion, for anyone interested in, learning about, or practicing in the field of hospice and palliative medicine!
Discussion topics:
T1: What are the main systemic barriers to good communication in healthcare?
T2: What is your favorite education tool? (Think broadly!)
T3: What is your favorite “high-yield” question to ask patients? Patients, what’s the one Q you want your HCP to ask?

Meredith MacMartin is a palliative care physician at Dartmouth-Hitchcock Medical Center in Lebanon, NH.

Monday, August 28, 2017 by Meredith MacMartin ·

Wednesday, July 26, 2017

Should Clinicians Be More (or Less) Politically Active?

by Christian Sinclair

Politics and healthcare are occupying much of the news cycle this summer with all of the discussions around the possible repeal of the Affordable Care Act (AKA Obamacare). On one hand it can viewed as must-see reality TV with all of the drama and back and forth arguments with passionate opposition. Late-night TV hosts help turn the drama into satire and give everyone a good laugh and some entertainment. Yet it is important to see that this will greatly impact the care of the patients we see every day.

To be honest, it was not until a few years ago that I started to see the power of getting more politically involved as a physician. . I thought that dutifully voting was doing my part as a citizen. Nowhere in my education was it ever modeled for me that I should use my training and experience as a doctor to help influence public policy. Talking to legislators? I don’t have enough time. I’m a busy doctor. Emailing legislators? They probably hear from other people. Reading up on the pros and cons of new legislation and how it may impact me as physician? That is why I pay dues to professional societies and their lobbyists.

A few years ago, I got the chance to go to a Hill Day with the American Academy of Hospice and Palliative Medicine. The morning started off great with legislators and their staffers coming to tell us about the importance of the public voice in a thriving democracy. It was just like being back in High School in American History class with Mr. Horvath! We were given our assignments for the afternoon to walk around Capitol Hill and meet our Representatives and Senators and tell them why we supported the Palliative Care and Hospice Education and Training Act (PCHETA).

Despite speaking on the merits of hospice and palliative care to thousands of people over the years, this setup for a small meeting with political leaders was intimidating. As legislators, they seemed distant and removed from my everyday life, but yet they were critically important to the function of government. Reflecting back on the passage of the Medicare Hospice Benefit, I tried to muster up the courage of those empowered volunteers of the early 1980’s. Many of us would not have careers if they had not knocked on Senators doors and told the story of people at the end of life.

Sitting in Senator Roberts office, I waited with my advocacy team. We struck up a conversation with the other people waiting to visit the Senator. They were from the United Motorcoach Association and mentioned in the course of our small talk they had been here before. I was bewildered. What important policy issues could the United Motorcoach Association have to talk about? Were they more important than the care of hospice and palliative care patients? But then it hit me. They have every right to be here, to advocate for their interests, to represent their story. And if they were here telling their story and I didn’t show up today, Senator Roberts would have no knowledge of what I care deeply about. If we don’t show up and tell our story, then no one is going to care enough to reach out to us to find out more information and therefore other policy priorities will be advanced long before ours.

So knowing that physicians vote less often than the general population (and even less often than lawyers), how politically involved should we get on behalf of our profession and more importantly on behalf of our patients? This will be the topic of the July 2017 #hpm Tweetchat too so if you want to join the conversation, get on Twitter at 9p ET on July 26th. You can also add your comments below.

Christian Sinclair (@ctsinclair) is a palliative care doctor at the University of Kansas Health System, and immediate past president of the American Academy of Hospice and Palliative Medicine. He writes for Pallimed when he doesn't have other deadlines impending.

Wednesday, July 26, 2017 by Christian Sinclair ·

Monday, July 17, 2017

Choice: The Hidden Curriculum in Palliative Care

By Paul Carr

Thank you to Dr. Naheed Dosani and the excellent team at William Osler Health Centre for inspiring this post.

What three words describe the essence of palliative care for you? When I asked my friends, family, and colleagues, the most common answers are: pain management, personal and spiritual support, and end of life planning. Those are all key components. But what quickly became apparent to me during my palliative care elective is that excellent palliative care providers embrace the role of enabling patients and families to make well-informed choices.

I have taken a long and untraditional route to arrive in the field of medicine. I’m over 40 and spent 16 years teaching elementary school before starting the MD program. As a teacher, I heard and read a great deal about the Hidden Curriculum: things that are not taught explicitly but are ingrained institutionally and learned through experience. Examples include behavioural protocols such as “Do not challenge your preceptors” even though you are told to question authority, and subtle reinforcement of gender roles in institutions that outwardly advocate for individuality. And I argue that patient choice is part of the Hidden Curriculum in palliative care.

Choice and Palliative Care

This is the World Health Organization’s (WHO) website's definition of palliative care:

It is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Following this definition is a series of bullet point items which explain what palliative care is or does, but without any reference to patient values, wishes, or choice. This is the essential mistake we all make in medicine. We guess at what will make our patients happiest, and then recommend the treatment most likely to attain that outcome. The danger is that if we don’t know what our patients want, we may end up providing them with longevity when they are seeking contentment and the company of family (or vice versa).

Patient Values and Choice In Medicine

An episode of the excellent Balado Critique podcast from Universitié de Sherbrooke reviewed the EXCEL and NOBLE trials, which compare bypass surgery to stents for treatment of heart disease. The experimental endpoints included all-cause mortality, repeat revascularization, stroke, and MI, which are all likely meaningful to some extent for a large majority of patients. But I was struck by the fact that these measurements may miss the point for many patients.They are inadequate for formulating a care plan, because they do not explore the goals, values, and wishes of each patient.

We love ‘hard numbers’. Government health agencies, private insurance companies and hospital executive boards love ‘em. They’re super for projecting on smart boards and backdrops during meetings and fundraisers. But what about the older patient who feels she has completed what she considers a good, satisfying life? What are meaningful primary outcomes for her? I searched the original text of the EXCEL trial for the words ‘pain,’ ‘satisfaction [with treatment or quality of life]’ and ‘happiness’ and I received a grand total of zero hits.

There have been attempts to quantify patient experience in research. As early as the late 1960’s, the concepts of Quality Adjusted Life Years (QALY) and Disability-Adjusted Life Years (DALY) experienced varying levels of acceptance (often by economists and accountants). More recently, research in dermatology has used specific scales such as Skindex and SCI which are based on experiential subjective self-reporting from patients.

The problem is that trying to quantify subjective experience is like trying to create a metric for favourite colour, or flavour of ice cream. The European Consortium in Healthcare Outcomes and Cost-Benefit Research performed an extensive study and concluded that “the hypotheses that found the QALY approach do not correspond to behaviour patterns observed in real populations.” This result was entirely foreseeable because we can no more predict what patients want than we can guess that their favorite colour is blue or their favorite ice cream flavor is rocky-road.

Enabling Patients To Choose

Consent law focuses on the ability to understand illness and treatment options, as well as the consequences of treatment selection or refusal. It sounds strange, but patients often are not aware of their own goals and values because they have not specifically paused to think about them or take inventory. I remember participating in a conversation with a gravely ill patient who asked initially for all available life prolonging options. My preceptor did not challenge the patient or recommend a course of treatment. She simply inquired, “Help me understand your choice. What is most important to you in your life right now, and what would your ideal end of life look like?” The patient talked about grandkids, spending time or even dying at home, and not wanting to be laid up in bed attached to machines. I don’t think my preceptor said more than 10 words in the whole conversation, but the patient had come up with some outstanding goals of care. Over the next couple days, the patient and the entire palliative team came up with a plan of care to meet those goals to the greatest extent possible.

Patient choice must emerge from the the Hidden Curriculum and take its rightful place as the basic starting point of all good medicine.

On the last day of my palliative medicine rotation, a young woman came in with a cake for the nursing staff on the inpatient ward. She explained that one year ago, her mother had died on the ward. At that time, the young woman was too sad but now she wanted to let the staff know they had provided her mother great care. She didn’t mention a single common research metric, but she smiled with gratitude and joy in remembering her mother.

References:

Balado Critique: Épisode 5 Études EXCEL et NOBLE. https://wwwusherbrooke.ca/baladocritique/archives/episode-5-etudes-excel-et-noble/
ECHOUTCOME Report Summary http://cordis.europa.eu/result/rcn/57938_en.html

Mäkikallio T, Holm NR, Lindsay M, Spence MS, Erglis A, Menown IB, et al. Percutaneous coronary angioplasty versus coronary artery bypass grafting in treatment of unprotected left main stenosis (NOBLE): a prospective, randomised, open-label, non-inferiority trial. Lancet 2016; Dec 3; 388 (10061):2743-2752. PubMed PMID : 27810312

Franco Sassi; Calculating QALYs, comparing QALY and DALY calculations. Health Policy Plan 2006; 21 (5): 402-408. doi: 10.1093/heapol/czl018

Stone GW, Sabik JF, Serruys PW, Simonton CA, Généreux P, Puskas J, et al. Everolimus-Eluting Stents or Bypass Surgery for Left Main Coronary Artery Disease. N Engl J Med. 2016 Dec 8; 375 (23):2223-2235. PubMed PMID : 27797291

WHO definition of palliative care:
http://www.who.int/cancer/palliative/definition/en/


Paul Carr, B. Mus. (McGill University, 1999) is a student in the MD program at McMaster University. He previously spent 16 years as a performing musician and junior/intermediate school music teacher. Paul sees interpersonal skill development as being a key to making healthcare more satisfying for patients and practitioners alike. His Twitter handle is @PaulCarrMD2018

Ice Cream Photo by Markus Spiske on Unsplash

Monday, July 17, 2017 by Pallimed Editor ·

Friday, July 14, 2017

Palliative Care & CHF: PAL-HF trial



The main results of PAL-HF - a randomized, controlled trial of specialty palliative care team involvement in advanced heart failure patients -  have just been published in the Journal of the American College of Cardiology (DOI: 10.1016/j.jacc.2017.05.030. Clinicaltrials.gov registration here). 

This is an important, well-done study, with encouraging results - specialty PC improved the quality of life of patients with HF. I'll discuss the results in more details in this post.

The study was done by a multi-disciplinary team of palliative & cardiology investigators at Duke. This week's publication looks at QOL results which were the main, pre-specified outcomes. Of note, in the clinicaltrials.gov registration for the study, they do pre-specify healthcare resource utilization outcomes as one of their secondary outcomes, but this paper doesn't  present those data - presumably those will take them longer to collect and will be forthcoming. 

PAL-HF enrolled 150 hospitalized patients with HF at high risk of mortality or rehospitalization, and randomized the patients to receiving specialty palliative care vs usual care. They identified patients using the ESCAPE risk model, which I hadn't heard of - key reference is here. The inclusion criteria involved the patients having an ESCAPE model predicted 6 month of mortality - notably in this study the actual 6 month mortality was 30%.

Intervention-arm patients received a palliative care visit, I think by a palliative NP - the methods section is a little cagey about who exactly saw the patient apart from a palliative NP, if anyone. The NP did a comprehensive palliative evaluation (physical, psychoemotional, spiritual evaluation), had a goals of care discussion, did advance care planning, and presumably made recs about what to do. The patients were followed for 6 months, which is the length of the data collected for this study. They methods say PC remained involved in the patients' care, although the exact nature of that involvement is opaque to me - eg it's not clear the patients actually saw PC in clinic or anything, and the role of PC may have been advisory to the cardiology team. The full methods of the trial were published in a different paper but even reading that it's not entirely clear to me who from the palliative team saw the patient in addition to the NP, nor the real nature of the 6 month planned follow-up. 
The primary outcomes were QOL on the Kansas City Cardiomyopathy Questionnaire and the FACIT-Pal QOL scales st 6 months. I need to say: 6 months, whoa. This is rare to see a study of this kind look at outcomes over such a long period, and it's one of the reasons I think PAL-HF will set a new standard in these sort of complex palliative-intervention trials. In the methods they note that a 5 point improvement in the KCCC and a 10 point improvement in the FACIT-Pal are believed to be clinically relevant outcomes. Their power estimate showed they needed 200 patients to show such a difference - they ended up enrolling only a 150 (but still showed a difference). It's not totally clear to me why they capped enrollment at 150 – they mention survival was better than anticipated. Nonetheless they met their primary outcome with less than the estimated number of patients (which is an argument for the robustness of their findings). Key here is that unlike a lot of  lower quality research they designed their outcomes to explicitly be patient-relevant, and powered their study as such. 

Patients had a mean age of about 70 years, ~50% were women, and ~40% Black. 

The outcomes at 6 months were good: improvement of 9-10 on the KCCC and 11 on the FACIT-Pal in the intervention group compared to the usual care group. These exceeded the thresholds for what is considered clinically relevant. Some secondary outcomes were improved too: depression and anxiety symptoms, and spiritual well-being (as measured using FACIT). 

As above, I am assuming the resource utilization outcomes are forthcoming. They do mention that survival and rehospitalization rates were similar between the groups (30% for each outcome at 6 months). 

My summary thoughts:

This is a well-designed and executed study - the sort of thing I read and say Gosh we need a lot more of these. Eg, fewer retrospective chart reviews and case control studies, more well-thought out, well-designed, prospective studies testing if and how palliative care improves our patients' lives. Besides wishing the methods write-up was a little clearer about the exact nature of the palliative intervention, I am few complaints about the paper. 

The limits of the study are intrinsic to its methods - and I want to talk about one of the major challenges we face in our research base, which is the challenge of generalization. Unlike a drug trial, team-based palliative care interventions are inherently complex, and presumably very sensitive to very local factors. Eg, what the good folks at the Duke palliative care program do may be somewhat different than what my teams do, and any other team in the country. It's well documented that while palliative care has become ubiquitous in larger American hospitals, that does not mean every program is populated by well-trained, competent, interprofessional teams. In fact, we know that many are not. What this means is that we know what the Duke team did really did improve these patients' quality of life. Generalizing, exporting, what they did to other programs is difficult. Ideally the next steps in research like this would be to do a similar study that is national, involving many regions and types of hospital populations (not just academic referral centers). This is not to criticize the PAL-HF trial, it's freaking great, but more to acknowledge that we can't just all go around claiming Palliative Care Improves QOL for HF Patients, Full Stop. As if palliative care is one simple thing, simple intervention, the same everywhere, etc. This is in contradistinction to drug trials. Generalization is a big issue with drug trials too, but it's mostly an issue of extrapolating results to different patient populations (eg community patients to academic center patients, etc). But it's not really a matter of thinking that there's something importantly different about, say, enoxaparin, administered in Loma Linda vs Durham NC. There may very well be important differences in palliative care between Loma Linda and Durham, however. 

I hope those sorts of multi-center trials become more common.

At the end of the day, this is a landmark study. I am really, really glad it was published in a heart journal. We have over a decade of decent research showing the improvements palliative care provides in cancer patients' QOL, but far less in other patient populations, including HF. PAL-HF is a big step towards making the belief that PC benefits patients with HF less up to debate.  

Friday, July 14, 2017 by Drew Rosielle MD ·

Wednesday, June 28, 2017

Upstream Palliative Care and Dissecting Hope From Hype in Oncology

by Christian Sinclair

Working in an outpatient cancer center, I frequently encounter the conversation about whether the next cancer treatment regimen is ‘worth it.’ Patients and families consider may interpretations of worth; financial being one of course, but also physical side effects, the emotional toll of investing faith into ‘one more treatment’ and hoping that it works. These conversations are challenging as they weigh biological, medical, spiritual, social, personal, emotional and other issues, so there is no neat equation which can easily tell you if the benefits or the risks are greater.

These struggles were nicely summarized by Liz Szabo (@LizSzabo) in her article “Widespread Hype Gives False Hope to Many Cancer Patients.” From hospital billboards that emphasize eliminating cancer, to multitudes of ads for new drugs with new indications are we entering a hype boom in cancer care or have we really reached the next level? Szabo has this amazing quote form the CMO of the American Cancer Society:

“I’m starting to hear more and more that we are better than I think we really are,” said Dr. Otis Brawley, chief medical officer at the American Cancer Society. “We’re starting to believe our own bullshit.”

(A quick aside, I appreciate his frank assessment and swearing. This is not some vanilla, focused-group response. Also, thank you Kaiser Health News (and CNN) for actually publishing it without asterisks)

What is causing this new level of excitement in oncology? Jennifer Temel recently noted that the therapeutic nihilism started to change with the emergence of genotype targeted therapies like tyrosine kinase inhibitors in the mid-2000’s. Her opinion piece in JCO on the Prognostic Uncertainty in the Modern Era of Cancer Therapeutics echoes what I have heard at last year’s Palliative Oncology Symposium, and the Cancer Center Business Summit, as well as what my fellow oncologists are saying as we see patients. But cancer therapy has historically been through boom and bust cycles of hype, how is it possible to tell if this is any different?

Pinned Tweet of Dr Prasad
Another great voice to listen to is Dr. Vinay Prasad (@VinayPrasad82) who constantly applies the screws of scientific theory to poke holes in over-optimistic press releases from drug makers and academic medical centers about the next big drug. Follow him on Twitter and you’ll quickly learn a lot of the hype is not necessarily backed up by the strongest evidence, despite what you may see on TV or even in journals. I would imagine given the modest evidence-base in palliative care he would take the same approach to us, yet I have found his explanations helpful to me as a palliative care doctor working upstream in an academic cancer center where every week I am seeing patients on brand new drugs or relatively new drugs with new indications.

For those of you working in more upstream palliative care in outpatient settings or in the community, how are you keeping up with the latest therapeutic advances in oncology? I see that I have needed to learn a lot in the last two years in this new position and see a new challenge for upstream palliative care.

If you are interested in talking more about this, join the #hpm monthly tweetchat tonigth Juen 28, 2017 at 9p ET and join the Facebook Group started by journalist Liz Szabo 'Treating Cancer: Hope vs Hype.'

Dr. Christian Sinclair is a palliative care physician at the University of Kansas Cancer Center, editor of Pallimed. When not reading up on the latest imboblumimab, you can find him walking his dog Spud to the park.

Wednesday, June 28, 2017 by Christian Sinclair ·

Thursday, June 8, 2017

Perusing ASCO 2017 - AKA Time for Lorazepam

by Drew Rosielle


The Annual Meeting of the American Society of Clinical Oncology was last week. It’s been my observation over the years that much of the best palliative-oncology and supportive-oncology research is presented at ASCO each year, before it’s actually published (if it ever gets published).  So I always dig through the palliative/EOL/supportive/psychooncology abstracts each year to see what's happening. Below is a gently annotated list of the abstracts that caught my eye the most, for your perusal and edification. Undoubtedly, these are my idiosyncratic choices, and if you want to dig through all of them you can browse the abstracts by category here. A couple additional comments first.

One of the big headline trials was a supportive oncology trial showing that regular tablet-based symptom assessment in cancer patients prolongs survival.  Christian promises me he's going to do a deep dive into the symptom tablet trial so I won't really talk about it here.

It’s interesting however to compare it to one of the other major headlines which was about abiraterone for advanced prostate cancer. People went nuts for this study, although if you dig into the results they’re pretty modest (3 year survival 83% in the abiraterone vs 76% in the placebo group), but in cancer trials that’s typical. I’m not knocking the study, they are good results, I’d undoubtedly do abiraterone myself, but there’s often a big disconnect in the headline findings in cancer research and the actual, real, patient-relevant results. Lots of money to be made and spent on abiraterone, which is why it’s gotten so much press. Full paper here:http://www.nejm.org/doi/full/10.1056/NEJMoa1702900#t=abstract


The symptom-assessment trial got great press, to be fair, but far less than abiraterone (see this WaPo puff piece which totally ignores the symptom trial, but does talk about abiraterone and the gobs of industry money slushing around ASCO, which makes me, and I hope many, many oncologists, nauseated).  


Here are the other abstracts which caught my eye, loosely organized, and mildly annotated. (I should note that my annotations are summaries of the findings - keep in mind these are abstracts, not full publications that have been through peer review, we can't really look at the methods, so when I say that the abstract shows that X is effective for Y, that's me summarizing the abstract, not endorsing the veracity of the findings.) Also, if you're an author, and I misrepresented your findings, shame me in the comments and I'll append edits in the permanent post. 

1. A RCT of pretty high doses of lorazepam vs placebo, plus haloperidol for EOL agitation, showing that the addition of lorazepam helped. This got a lot of chatter on Twitter, especially about how it compared to the RCT of low dose haloperidol/risperidol for delirium.  I think it’s validation of the idea that it’s imperative to keep in mind the therapeutic goals with regard to delirium and agitation. Ie are we trying to sedate someone (=suppress the agitation behavior) or are we trying to improve the delirium? The first we can do, as this abstract shows, quite easily with a good dose of a benzodiazepine; the second we still lack any convincing data about any effective strategy in our late-stage patients, despite the widespread observation (belief?) that haloperidol & similar agents help.  Good stuff and I hope it's published in full soon:  http://abstracts.asco.org/199/AbstView_199_181607.html
  
2. A study looking at chemotherapy and palliative consultation in ICUs:  http://abstracts.asco.org/199/AbstView_199_192587.html 

3. Another study showing helpful effects of early palliative consultation in hospitalized cancer patients:   http://abstracts.asco.org/199/AbstView_199_190938.html 

4. A study looking at the relative stability of treatment preferences in advanced cancer patients over time:  http://abstracts.asco.org/199/AbstView_199_192725.html 

5. A study looking at Latinos & EOL preferences, including the generational effects after immigration: http://abstracts.asco.org/199/AbstView_199_193461.html 

6. A study about patient-caregiver agreement about goals: http://abstracts.asco.org/199/AbstView_199_192587.html 

6. A study looking at the natural history of fatigue in breast cancer survivors for 6 months. I wished they followed for even longer and hope they come out with data at years 1, 2, 3 and beyond: http://abstracts.asco.org/199/AbstView_199_182648.html 

7. A mobile CBT app for anxiety in cancer patients does very little: http://abstracts.asco.org/199/AbstView_199_194370.html 

8. A study looking at what healthy people say about whether they'd want 'palliative' vs curative chemo for AML, hypothetically speaking. Interestingly, responses seemed to be more fixed (fixed beliefs about whether chemo is worth it or not) than based on the information provided about different levels of side effects. This sort of research is fascinating, but I always worry that what healthy people say in a survey about a hypothetical question is very different from what they do when actually facing a life-threatening disease. The same problem with statements people make when they are healthy, and even put into health care directives. "Uncle Joe would never want to go to a nursing home." That sort of stuff - ie does it actually mean Uncle Joe would rather choose to die this month than go to a nursing home - how do we actually interpret the prior statements, etc. Anyway:  http://abstracts.asco.org/199/AbstView_199_192439.html 

9. A fascinating study about potential interactions between depression, and depression treatment, and length of stay in  hospitalized cancer patients:  http://abstracts.asco.org/199/AbstView_199_188306.html 

10. A cocoa-based balm for onycholysis in chemo patients. There were 2 onycholysis abstracts this year. Why not?  http://abstracts.asco.org/199/AbstView_199_186790.html 

11. A mildly promising pilot study lactoferrin for chemo dysgeusia:  http://abstracts.asco.org/199/AbstView_199_191178.html 

12. Several studies of olanzapine for chemo nausea/vomiting (CINV). One showing it's more effective for emesis than nausea?:  http://abstracts.asco.org/199/AbstView_199_185558.html. More data for olanzapine: http://abstracts.asco.org/199/AbstView_199_181353.html. And in case there was any doubt, here's a metaanalysis of olanzapine for CINV demonstrating its effectiveness:  http://abstracts.asco.org/199/AbstView_199_187470.html 

13. A follow-up, with longer term data, from the RCT of palliative care for stem cell transplant patients showing improvements in depression and PTSD, but not other outcomes, at 6 mo: http://abstracts.asco.org/199/AbstView_199_188285.html. Earlier publication here: https://www.ncbi.nlm.nih.gov/pubmed/27893130 

14. Predictors of aberrant drug behavior in a cancer center population (helpful, and it’s exactly what you’d expect it to be, because they are the same predictors in the healthy population): http://abstracts.asco.org/199/AbstView_199_192505.html  

15. Yes, transbuccal fentanyl helps for dyspnea: http://abstracts.asco.org/199/AbstView_199_181614.html 

16. A RCT of minocycline for chronic myeloma pain (!) which showed promising results (phase II, better trials are needed). I vaguely had a sense minocycline had antiinflammatory effects, but apparently it could have analgesic effects too. Really looking forward to a study which hopefully looks at long-term safety and efficacy: http://abstracts.asco.org/199/AbstView_199_186197.html 

17. I hadn’t known this but there is actually a RCT showing that l-carnitine WORSENS taxane CIPN. Ugh. I have never used it due to lack of data showing efficacy, but hadn't realized it was probably toxic and still see patients on it sometimes. If one needed reminding that all these herbs, supplements, and so-called alternative treatments aren't these bland, safe, anodynes this is a good reminder. Science-based medicine is what our patients need and deserve. This abstract is a follow-up to the study showing it was poison:  http://abstracts.asco.org/199/AbstView_199_184547.html 

18. A deeper look at the truly nasty neurotoxicities of anti-PDL1 drugs (the major class of cancer immunotherapies). Little is known about this (I've now seen one case) and we will see more and more of this as these drugs are more widely used:  http://abstracts.asco.org/199/AbstView_199_191534.html 

19. Finally, and whoa -- single fraction is as good as multi-fraction radiation for cord compression. At least in patients with poor long-term survival (median survival was 12 weeks in this cohort). I look forward discussing this with my rad onc colleagues, as it would be a very welcome option for patients with less than 3 months to live so they didn't have to spend 2+ weeks of that time getting radiation: http://abstracts.asco.o/199/AbstView_199_186591.html

Thursday, June 8, 2017 by Drew Rosielle MD ·

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