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.

DELAYED GRIEF

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It was an odd start to a dream vacation in Rocky Mountain National Park.  Tears streaming down my face on the drive from home to the Cedar Rapids Airport.  My husband and I were going to meet two Australian friends-Conrad and his 22 year old daughter, Claire, who was my daughter Claire’s close friend while we lived in Melbourne for 6 months.

But Doune was going to be missing.  Claire’s mother and my soul mate died in a car accident on her way back to Melbourne two years earlier.  Doune was a tall woman with a fast gait—she and I walked with her dog Gypsy along the Yarra River in Melbourne at a speed that left me (short legged) breathless.

When we lived in Melbourne, Doune invited me for a Sunday lunch one weekend, I realized that real people cook marvelously  and with a eye for taste and presentation…and have outside parties that I thought were fictions of food magazines.  claire3050She enjoyed my attempts to get through a cookbook of an Australian chef, Bill Granger whose restaurant I loved in Sidney.  She and Conrad were kindred souls when we planned a birthday party for our daughters- the Claires (amazingly with birthdays a day apart) which was a lollies and chocolate scavenger hunt in a city that prides itself on its chocolate shops.  The girls went everywhere in the city.

The relationship continued across the Pacific.  We hosted their son Boyd for 4 months in our home.  We continued to send packages, and Doune was regular about sending any of the new Bill Granger cookbooks.

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And then a call came 2 years ago that Doune had died and that the Wonder Dog Gypsy had survived the accident.

Up until that trip to meet Conrad and Claire, Doune’s death was nothing real.  Sure, I went on a commemorative hike  in Iowa when they had “Doune’s walk” around Princes Park in Melbourne.  But until I walked and hiked with Claire who had Doune’s fast pace, tall stature, and ability to talk while walking fast—the reality of my loss  (and how small it felt compared to theirs) had not set in.   I deferred my grief as there was no reason to subject myself to that pain.   How generous of Claire and Conrad to comfort and listen while tears flowed before, during and after our hikes ….. two years after her death.

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The irony of it all is that Doune sent me a book years earlier, written by colleagues or teachers called Nonfinite Loss and Grief, by Elizabeth Bruce and Cynthia Schultz.  The book is about grief when the object of your grief is still present-a family member with dementia,  or in other life situations when life chronically fails to meet expectations.  The grief never ends as it reinforced by constant comparison to “what could have been” and the constant contact with the object of grief.  This kind of grief can be disenfranchised grief—not socially allowed because the object of the grief still lives on.
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It occurs to me that we might defer grief for reasons other than long distances and many time zones.  Sometimes we take it in small chunks because it is all we can handle.   Or we think that strength is not crying or appearing resilient (a trait I see  in professionals).  Deferred professional grief can lead to burn out, and in health care, we tend not to model grief for our younger colleagues. Helpful articles about professional grief can be found here and here.

Doune mount Buller July 2011I know Doune would care about our grief.  She was such an engaged Mum that she would care most about the grief work of her now adult children.  She is no longer physically present to help-she is here though,  in the presence of memory—which are stirred when I open the Bill Granger cookbooks, see the pictures of her family and when I sensed her while on the top of Estes Cone in Rocky Mountain National Park.
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100 Great Nurses

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A couple of weekends ago, while on call for the Palliative Care consultation service, I turned a corner in time to see the sobbing adult son of a dying patient leave his Dad’s hospital room.  The next image stopped me in my tracks: On this busy medicine inpatient unit, a nurse named Becky opened her arms and hugged the man.  It looked natural and genuine, and well, … human.

Becky is one of 100 Great UIHC nurses who signed up to take the End of Life Nursing Education Consortium (ELNEC) course online on their own time.   This national nursing education initiative to improve palliative care began in 2000 and over 16,000 nurses have completed the course.  The course has been divided into eight modules: Nursing Care at the End of Life; Pain Management; Symptom Management; Ethical/Legal Issues; Cultural Considerations in End-of-Life Care; Communication; Loss, Grief, Bereavement; and Preparation for and Care at the Time of Death. In recognition of the needs of different populations, there are now ELNEC courses for pediatrics, critical care, public hospitals, veterans and geriatrics.

The Great 100 UIHC nurses are taking the course on line through the Hospice Education Network (HEN). The faculty for the course are the national “who’s who” in hospice and palliative nursing.  Palliative Care at the University of Iowa underwrote this educational initiative, with a volume discount from HEN.  We targeted inpatient nurses, nominated by their nurse managers, and provided it free of charge.  At the 4 month mark, 79% have initiated the course and 14% have completed it.
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For me it has been great fun to talk to the nurses about what they have learned from the course.

Becky Wendt, 6RC (Medicine) told me that the biggest takeaway from the ELNEC course was the value of communication skills in our complex hospital environment. ( I am sure she would have hugged that grieving man even before the ELNEC course, but the course reinforced the value we place on her own humanistic core.)

Oncology nurse, Lindsay Gaskell said: Once I started the program, I just couldn’t stop! I guess you could say I was somewhat addicted :) I found the topic of medication administration for the dying patient to be the most informative as it is so specialized for this patient population.  For example, sublingual morphine is absorbed in the stomach, not under the tongue.

SNICU nurse, April Doggett:  All of the information has been overwhelming and incredible.  The piece that I feel that I have learned the most on is the Ethical Presentation; we have such a small percentage that use Advance Directives appropriately or even have them. I am really looking forward to the last module- The Finals Hours of Life.  I find it an honor to be a part of family decisions in times of critical need.

Kaytee Knoop, SNICU: I will continue to remember is the use of opioids in patients with renal failure.  I think that we all think any pain medicine will be sufficient in keeping the patient comfortable during compassionate extubation, but there still are the side effects of metabolite accumulations and it may cause more discomfort to the patient. (Glad to have you, Kaytee in my ongoing quest to avoid morphine in renal failure!)

Annie Inglehart, 3JPW (ENT/GYN ONC): This past week I helped a colleague work with a patient that came to UIHC from an outside hospital just to sit in the ER and then come to our floor and die here after 2 hours, the patient was 93 and DNR.  It seems that the time spent running from one hospital to another could have been valuable family time to process her passing (I know we learned that using the word “dying” would be more clear cut and truthful – Hard to break an old habit).

Angie Kipp, SNICU: I appreciated the topic of multidimensional pain- take all things into consideration when treating someone’s pain including financial, emotional and spiritual concerns. What does this pain mean to the patient? It may be seen to them as a source of “punishment” from things done in their past or may be seen as a disease process returning or worsening in their body- these patients need more than pain medication.

Emily Van Essen, 3JPW(GYN/ENT ONC): One thing that stands out to me that I learned about was the concept of “last dose syndrome.” Being a new grad nurse, I had not experienced this yet, so I wouldn’t have even thought of it as a concept to discuss with a family in end of life. After hearing about the concept I can see how easy it would be for people to be afraid to cause harm, even though their intentions are good. The end of life process is something that the family will remember, so we need to ensure that those caretakers don’t feel like they are killing their loved-one by giving what they believe was the “last dose”.  (Our palliative care team was very proud to hear that Emily was chosen by her charge nurse to care for a patient who was dying because she had completed the ELNEC course-great recognition Emily).

These nurses have completed the entire ELNEC course:

Lindsay Gaskell, Cancer Center Infusion Suite

Leslie Bonnet, SNICU

Kristina Gates, ED

Tammy Krotz, 6RC

Deanne Sinn, 6RC

Emily Van Essen, 3JPW

Becky Wendt, 6RC

Amber Clark-ED

April Doggett-SNICU

Kaytee Knoop-SNICU

Jean Burr-3JPW

Maria Broghammer-4JPE

Susan May-4JPW

Ann Iglehart-3JPW

Next time you see them, congratulate them and ask them for a palliative care education tidbit: the whole idea of ELNEC is to “pass it on”.  We owe it to ourselves to build a community of learning, and … humanity.

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Men’s love for their mothers

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I have been struck this week by the loving attentiveness of men toward their mothers.  My mother has always downplayed Mother’s Day as a Hallmark invention.  (My own children feel that this is the day that I should prove greatness by making them breakfast.)

This year has been a tough one for my Mom-a complicated knee surgery and worsening macular degeneration.  She continues to live alone in her dream home that she and Dad built in the 1970’s.  My brother looked ahead and decided that a 10 day trip from Arizona to New Hampshire would include Mother’s  Day.   During our 3 way phone calls together, it is clear that her frustration level is low, the humor is high, and while he is deferential in important matters, he pokes fun when he can. He is walking shoulder to shoulder with her– day in, day out,– during a tough time.  What love.

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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!

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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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