What can palliative medicine learn from the Museo Picasso?

Pablo Ruiz Picasso painted the award winning Science and Charity at the age of 14. In it he depicts the very familiar—the scientists and the altruists at the bedside of a dying patient. They are almost caricatures of what we might see every day. The scientist has his back to the the dying patient, measuring a number, -the pulse- and the nun holding a child standing over the dying patient with sympathetic eyes.

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For some, palliative medicine is the role of the “good sister”-comfortable at the bedside, giving good eye contact, recognizing the role of family.   I reject that as the adolescent black and white thinking of the masterful artist that created it. Palliative medicine is replete with scientific humanists.

My visit to the Museo Picasso coincided with the American Society of Clinical Oncologists 2014 (ASCO) meeting, with a thundering presence on Twitter. A new role of physicians will be to recognize the heartbreak of financial ruin with all the targeted therapies, the beneficence of stopping statins in the last year of life, and the increasing evidence for obesity as a risk factor for cancer. I could not stop reading the material linked to the tweets.

ASCO tweets are not usual fodder for a vacation. That vacation had a subtext—career definition after a 7-year stint as a director of a palliative care program at an academic medical center. Where do I go from here so that I can care for patients with scientific humanism without spending my own self? How does my clock get un-lopsided?

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See Mindtools.com to do your own.

Salvador Dali had his own version of my clock:

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The classic talent in young Pablo stunned me. No wonder he rejected his teachers by the time he landed in Madrid at the Royal Academy in Madrid.   Good to reflect on the many career shifts he had after his early life as a classical painter.

Stay tuned for my future clocks. Not sure how I will have a less lopsided clock in my future, but here are some of the possible ways….

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BYO Jeopardy…Palliative Care: It makes you feel better

BYO Jeopardy
Palliative Care: It makes you feel better

Want to have some fun at your next lecture on Palliative Care?  Use or adapt my jeopardy game, Palliative Care: it makes you feel better.  No seriously, go right now and search on #40860.  In this very well designed web site, you can build a jeopardy board to teach the pearls of your discipline in an interactive, fun format. (Or use it for family trivia night during the upcoming holidays).

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I tried this on Internal Medicine fellows.  Internal Medicine fellows are often too busy for a 1:00 PM didactic teaching session.  It could have been hard group to please.  But the evaluations were high, with “Excellent”, “Liked the game style, involved all the fellows”, “Enjoyed the interactive presentation, very fun presentation”, and “Great interactive session about palliative care”.  High fives all around.

Another thing?  I had fun. 

I shared Harlan Krumholz’ A Note to My Younger Colleagues…Be Brave, and the Heart Rhythm Consensus statement on discontinuation of therapies, and Joan Teno’s work on dementia and feeding tubes and readmission.  Of course, I included the Temel study on the survival benefit of early palliative care in lung cancer.  I hoped they understood that behind each of those jeopardy boxes was an answer that challenged dogma.

You will want to adapt it to your own personality  and pearls as you will find out when you select Palliative Surgery for $100, or try to answer the daily double.  But your heart might warm, as mine did, when the answer under “UIHC policies for $500” is “ A good idea”, and one Internal Medicine Fellow said “Get a Palliative Care consult”.

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European American view of the role of race in the clinical presentation

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Recently at a morning meeting for our Palliative Care consult service, I heard a presentation of a young patient with very advanced illness who had been on a ventilator for a prolonged period in our ICU.  The presentor did not share the race of the patient.

I asked if the patient was African American.  The answer was “Yes, is that relevant?”  And an intern shared that he was told by an African American faculty member at his medical school to never, ever share the race of a patient during a clinical presentation because it prompted so many assumptions about the patient by the clinical team that it would cloud clinical judgment.  This issue also appeared in a recent opinion piece in the Annals of Internal Medicine.  Does the race of a patient belong in the social history, physical exam, or in the introductory sentence?  My position (and one that I hope sparks a discussion) is that in the field of hospice and palliative medicine, the race of the patient should be stated early in the clinical presentation.  For African Americans who seek health care in the United States, race figures prominently in their interactions.   Why should their race be buried in the social history?

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I admit to being tentative on this point.  I wonder if that African American faculty member at our intern’s medical school might also consider a more nuanced position. When I round with a person of color on my team (a too rare event in my state), African American patients look to them for reassurance, no matter how junior they are to me.  Repeatedly when I tiptoe into the topic of race, with African American patients,  I hear that the patient IS concerned that he or she is getting appropriate care—one person in her last hours, cited as evidence for her concern: the Tuskeegee-esque  intentional infection of Guatemalans with syphilis. by North American researchers just revealed in the international press weeks before she was hospitalized.

To suggest that race is not a factor in the decision making of this young seriously ill African American patient would be naive.  For people of color, race plays a role across economic class: professional colleagues describe dressing up for their doctors’ appointments—a measure that their European American counterparts would not think necessary.

Hospice and Palliative Medicine struggles to meet the needs of the African American community.  More often than not, people die in African American community without the assistance of health care professionals who are trained in African American ethics, trained in health care disparities and we have not successfully recruited African American health care professionals to change this.  Token members recruited to our health care teams will likely not change this—all members of the team will need to understand how white privilege is played every day and how African Americans might navigate health care differently.  (One of the valuable comments from the Undoing Racism  workshops came from Ron: “Nothing wrong with white privilege.  We just think everyone should have it”).

African Americans in the health care setting might have an internal conversation about how they are being perceived, or they might have concerns about whether they are getting the optimal care or experimental care.

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So… this African American patient with a prolonged ICU stay and her family might have very specialized needs, ones that take trust-building, listening, hearing the family sources of strength, and respect for differences in end of life preferences from their health care providers.  I am thinking that naming race could bring an intentional compassion and respect that helps meet patients where they are-a principle that we champion in Palliative Medicine.

Read more in the book Americanah by Chimamanda Adiche, a novel that captures race in America from the perspective of a Nigerian émigré, Ifemelu (a blogger who inspired me to write about this). Chillingly insightful.

Connected and Disconnected in Serious Illness Valley National Park

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It’s not about death, right?  I would like to share some stories from my daughter’s and my spring break trip to “Serious Illness Valley National Park” at end of March.

Much like the Lost 49ers who arrived in the valley 163 years ago, we arrived without understanding the enormity of the valley, on a whim.  The beauty was arresting; the roadrunners are not as big as the cartoons from our youth; the long ribbons of highway seemed endless. The geologic formations had straight lines that I associate with skyscrapers.
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My top 3 takeaways from the American Association for Hospice and Palliative Medicine meeting

My colleague Dr. Earl Quijada just wrote a blog about the top three lessons he learned at the national meeting in hospice and palliative care. As I evaluated the sessions for CME credit, I am embarrassed to admit that I spent lots of time in the hallways, and all four evenings listening to music.

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Here are my top three:

1.  Teach with small incremental tasks: I live (or should I say lived?) in terror of having a learner spoil or blow a sensitive  goals of care conversation with a patient and family.  You remember the feeling… when you were a second year resident and had to go and start the IV after the medical student and intern had tried two to three times each. So I rarely let a learner perform the sensitive discussions.  Drs. Back, Arnold and Tulsky have given me a technique of discussing the meeting ahead of time to identify challenges and let the learner know that I am going to step in when the learner gives me the signal, and follow the meeting with a debriefing.

We practiced their technique many times over that preconference.  We even got a technique for debriefing with colleagues.  I will make it a standard of my care that I always include a learner in patient interactions. Why waste the teaching moment?

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2.  Thousand (uncelebrated ) Points of AmazingnessI attended two SIG meetings-one for Program Chiefs and the other for Fellowship Directors. I stand in admiration at the depth and breadth of our scholarship, our reach for excellence, our sense of equity to incoming fellows,  our commitment and our cunning (using the Joint Commission Advanced Certification to get what we need for the program).

I did hear some specialty physicians get thrown under the bus: surgeons, among them.  The irony is that palliative medicine started with surgeons. (Think mastectomy, Billroth, Whipple). My 2nd take away is to enjoy the variety of PC docs (big fish and little fish) and the routes we have taken. When I am tempted to roll my eyes about a colleague-I will first seek to understand.

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3.   Duke nailed it:  Duke’s Solid Tumor oncology service is staffed by oncologists and palliative care physicians.  After a patient is admitted, the teams decide if the patient is better served with the palliative care physician as primary (high symptom burden of pain, nausea, dyspnea) or with the oncologist as primary (more disease directed care required).  The entire team meets 3 times a day with the other disciplines.  Outcomes are decreased LOS, decreased 7/30 day readmission rate, and decreased visits to the ED.

I will respond to the sentiment that advance care planning can be done too soon.  I live in a community that is trying to reproduce the Lacrosse Wisconsin/ Bud Hammes Respecting Choices model.  In our version, HONORING YOUR WISHES, the document is about values first, then about medical interventions that are appropriate to the stage of life.  Since I am 56 years old, the only medical intervention decision that my family will need to make is about a sudden event.  I have covered this in my advance care planning document.  Nursing home patients fill out an IPOST, and people with chronic disease will fill out another document.  Building a culture of informed consent around end of life cannot be a “just in time” affair.  All the generations need to participate.  At least that is what we are hoping for in Iowa City.

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What is Soloman Group anyway?  I thought WE brought stories to life!

Marcy Wenberg: Palliative Care Social Worker Extraordinaire

Jessi Dehl Williams is lucky enough to be spending her MSW advanced practicum with the Palliative Care team. She wrote this profile in honor of National Social Work Month celebrated in March.

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Marcy Wenberg loves being a Palliative Care social worker at the UIHC and says the last two years have been “a dream come true” for her.

“I get to work with patients and families at their most vulnerable times,” she said. “I help at a time when most patients are completely overwhelmed, whether they have a new diagnosis or they are dealing with a long term illness.”

Hospice referrals make up the bulk of her discharge planning and she relishes the intense patient comfort-focused-approach one finds in the hospice philosophy. She says that when patients are focusing on curative treatment, they are often navigating a healthcare system that includes multiple sites of care including the hospital during admissions, primary care physicians in the patient’s home community and other healthcare agencies. Often, patients and doctors need to make tradeoffs for treatment. A treatment that extends a patient’s life may also come with uncomfortable side effects. The decision to stop treatments that are no longer working is often a difficult decision for patients and families. Marcy makes that transition easier.

“When treatments stop working, hospice focuses on a patient’s end of life wishes and their comfort so the time they have left is meaningful,” Marcy remarked. “One agency will be guiding their healthcare and the focus is only the patient’s comfort.”

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ADVOCATING FOR PATIENTS

Marcy has been a social worker for 39 years and has spent 35 of those years in medical social work. She has been in three different healthcare settings and has been at UIHC for nine years. She has a wealth of experience and says that she enjoys her dream job because practicing with Palliative Care patients is different than her previous assignments.

“I get to spend a lot more time with my patients and families,” she said. “I have more time for counseling as we try to get patients where they want to be.” The needs of Palliative Care patients can be complex and complicated by medical needs, family dynamics, coping ability, insurance concerns and other issues. Marcy also works with patients and families to make sure that patient goals are supported outside UIHC, often arranging for a patient to go home with an out-of-hospital-do-not-resuscitate order.

“The last thing dying patients want is to come back to the hospital and the out-of-hospital DNR order signed by an attending physician avoids unwanted hospitalizations,” she said.

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IT’S A TEAM APPROACH

Working on an interdisciplinary team also contributes to Marcy’s job satisfaction. She enjoys working closely with Palliative Care physicians and nurse practitioners for family meetings and discharge planning and she collaborates with chaplains and music therapists to help patients that having coping and spiritual issues. She occasionally worked with the Palliative Care team on her last assignment and their team approach was the reason she ultimately applied for the job.

“I really feel like a valued member of the team,” she commented. “I appreciate it when the team respects what I can offer patients and families.” She added that when she teams up with the physician or nurse practitioner on the case, patient care is improved. Co-interviewing a patient gives both team members the same first-hand information and broadens the understanding of the patient’s needs. It also minimizes the number of interruptions in a patient’s day, allowing more time for rest.

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EDUCATION AND RESEARCH

Marcy shares her considerable experience with the next generation of social workers, physicians and healthcare professionals. Every year an MSW learner gets the opportunity to spend nine months working with her. She chooses students that indicate a desire to continue working at UIHC and says that is her part in growing the department. She is on the Social Work Education committee that develops monthly spotlight presentations, presents Palliative Care 101 to social work students and was voted “Best Support Person” by Internal Medicine residents in 2010.

She presented “Hospice Referrals: How to Request the Information You Really Need” at the annual Iowa Hospice and Palliative Care conference in November 2012. She then shared with the UIHC Social Work Department, community social service agencies and other UIHC departments in March 2013.

Marcy inherited a Palliative Care research project in development that initially sought to survey patients about their experiences with hospice referrals. Eventually, Marcy started calling hospice agencies with a Quality Improvement Survey to get feedback about the referral process. The project took another step forward in Fall of 2012 when she started sending a direct email to attending physicians and primary care doctors after the patient died giving them an update on the patient, sharing the amount of the time the patient enjoyed hospice services and thanking them for the referral. The project took a third step forward on January 1, 2013 when a Palliative Care physician asked her to start collecting the patient’s admitting hospice diagnosis. The physician plans to use that data for future research endeavors.

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THE FUTURE OF PALLIATIVE CARE SOCIAL WORK

Marcy is excited for the future. She says that physicians are making more referrals to the Palliative Care consult service. The team is tracking the growth and assessing the need for more team members, which may include another social worker. She also looks forward to the growth in the outpatient clinic where Palliative Care team members are able to start pain and symptom management earlier for patients with chronic health conditions.

“It is gratifying to see that the Palliative Care consult service is appreciated and accepted by hospital administration and staff,” she said. “This is a great place to work, and I wouldn’t want to be anywhere else.”

ICUs and Hospice: Good News and Bad News

In the last decade, palliative care and referrals to hospice have dramatically increased. Looking closer at the data, Dr. Teno and her colleagues saw something troubling – the sharp increase in hospice referrals is accompanied by an increase in transitions in care and an increase in intensive unit stays in the last month of life. So we are more likely to figure out that people are dying in an ICU and discharging to hospice after their ICU stay– sometimes for as little as the last three days of life.

I often say that 80 per cent of deaths in America are predictable by most physicians, and yet we do not have the training to do anticipatory guidance for our patients with serious illnesses. And ICU doctors, who oten do not have a relationship with the patients, are now asked to do the hardest task of all: to sit with families and sort out the medical options and the patients’ goals of care. So the good news is that ICU doctors appear to value hospice support. The troubling news is that we physicians are sending dying patients– even predictably dying patients– to the ICU.

The solutions are straightforward and exist in our community:

• Strong advance care planning where families share a conversation about what they value and what medical interventions are acceptable to them. Honoring Your Wishes in Johnson County is one such program.

• When patients appear to be in the last year of life, have a facilitated conversation about an Iowa Physician Orders for the Scope of Treatment (IPOST). Have you ever seen one of these?

• Ask ourself as health care worker—especially if you are in an outpatient clinic—Could the patient I am caring for die in the next year? How can I best guide them? How do I support them and myself? Let’s not hand that job to our ICU colleagues.

I finished my advance care planning document about 10 months ago with a great Honoring Your Wishes facilitator. I will revisit it in about 2 months. I said some black and white things in that document that I might want to change, but after I retire, I think I will be happiest staying outside of the hospital.

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My Trip to Fort Madison

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A new Iowa state law requiring physicians to have training in end of life care and pain management prompted the Fort Madison Community Hospital to invite me to give two hours of lectures and workshops today at the hospital. Their hospital has 50 inpatient beds and a strong community hospice.

It was a beautiful ride south to Fort Madison. This is the route my grandfather took in 1934 on a wintry day. He lost control of his car and died. The promising University of Iowa researcher planned to talk about liver disease to physicians in Mount Pleasant, Iowa.  I drive carefully on this road.

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The audience included people from many disciplines, including chaplains, nurses and physicians.  It is always a challenge to engage a multidisciplinary audience, but the two hours passed quickly with an opiate problem solving workshop that Dr. Lee Kral and I designed over a decade ago to prevent sentinel events with opiates.  During the second hour, I presented the common symptoms at the end of life using video clips from patients, who can describe their symptoms better than any physicians can.

Here’s a few of my favorite things from my trip. What a surprise that a state law would bring a day of such richness:

  • The wintry brown countryside with cumulus clouds and outlines of farmhouses
  • The warm welcome from the staff at Fort Madison.
  • The news that Fort Madison Community Hospital is starting a palliative care program.  (Perhaps Iowa will become an “A” state on the Center to Advance Palliative Care website.) 
  • Hall’s ice cream parlor, which allows adults to have a kiddie-sized shake, is in its 29th year in Fort Madison.

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  • The longest swing/pivot bridge in the world:  

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I could make a habit of these therapeutic road trips!

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System projects- what palliative medicine brings to medical education

Listen to Audio Interview with Dr. Arnold Milstein

The online interview with Dr. Arnold Milstein (listen to interview above) in the NEJM January 3, 2013 really spoke to me.  The idea of a learning health system is that we treat the patient, but we also treat the system—for instance, asking questions at the bedside about why the patient landed in their current predicament.  Or, why did the patient with advanced liver disease arrive in the ICU again — if this is part of a clear trajectory to transplant, good.  Did we physicians fail to provide the needed anticipatory guidance to a patient or family? Then, how could that have been done better.

Here at the University of Iowa Palliative Care program, every student or resident has a systems project, in which we ask them to “go up 30,000 feet and look” at how well the systems are interacting.  Do the inpatient and outpatient clinicians communicate?  How well are we guiding patients with chronic disease about their illnesses and the outcome of their illnesses?  After they have identified a break/fjord in the systems’ interface, they build a small solution that they can test, sometimes during their rotation.

The system projects have been many:

  • A compassionate extubation protocol to help ICU teams appropriately support patients and families who have decided to remove ventilatory support.
  • A presentation to the state hospice organization identifying the needs of liver failure patients, and how they are different than traditional hospice patients with dementia, COPD, and cancer.
  • A method of informing and interviewing the patients’ primary physicians to gain insights about an inpatient.
  • A pain competency project to give feedback to the residency programs when residents have attended pain workshops and taken a competency exam.

Dr. Milstein also asks a third question for physicians to address — did we add value?  One can only know that by asking the patient.  Mmm, that might take sitting down. A topic for another post.