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 ·

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