How can we help patients have a good death?

Nov 3, 2016 1:10 AM

When Joan Sheetz, M.D., and Anna C. Beck, M.D., met during their work at Salt Lake City’s Fourth Street Clinic for the homeless, they were able to recognize a shared interest in the humanistic side of medicine—the ability to look beyond the illness or injury to the person behind the problem. 

In their day jobs, Sheetz, a pediatrician, and Beck, an oncologist, both provide palliative care for their patients. They wanted to improve their own skills and share their knowledge with others. In 2014, they launched the Hospice and Palliative Care Fellowship Program. But that wasn’t enough to close the critical gap in palliative care, so in 2014, Sheetz and Beck—with the support of Department of Pediatrics Chairman Ed Clark, M.D.developed the Utah Certificate of Palliative Education (UCoPE), a four-day intensive course for health care professionals hoping to improve their skills and knowledge in palliative care. 

Last September, Sheetz and Beck wrapped up their seventh UCoPE course, having educated a group of around 175 providers in communication and symptom management skills with didactic sessions, small group discussions, and role playing. The course is led by faculty from multiple departments—including pediatrics, internal medicine, oncology, psychiatry, and geriatrics. UCoPE also is available to Intermountain Healthcare’s rural and out-of-state providers. 

Besides developing providers’ ability to launch end-of-life discussions with patients and their family members, Beck and Sheetz hope the course will reinforce resiliency and compassion, two qualities they believe are critical in palliative care.

Editor's Note: Instead of focusing on curriculum design, we’re celebrating people who are already lifelong learners. They’ve taken on the responsibility to learn new skills and are helping create a system that supports that kind of learning for others. They’re changing the culture. 

Q: Is the culture (for both providers and patients) resistant to this conversation about palliative care? 

A: Beck—I think it’s that people don’t know what palliative care is and they don’t quite understand it and they always equate it with end-of-life care so they withhold it from patients because they assume that it’s just end-of-life-care. I don’t think people are resistant to helping patients achieve a better quality of life. I think they just don’t realize, as an up-and-coming specialty, palliative care brings more to the table than just end-of-life-care. 

A: Sheetz—Providers sometimes are afraid to talk about palliative care because they don’t want to cause someone to lose hope. 

Q: How do we get beyond feeling responsible to do heroic efforts for our patients? 

A: Sheetz—It’s by building relationships with patients and establishing what their goals are for themselves and helping create a treatment plan that supports those goals. Too often the goals part is completely left out of the conversation; the conversation turns into a “we need to do this, we need to do that,” and those needs are to fix specific problems, but they’re not to address the totality of an individual. To me, I think that having goal-directed conversations in the setting of a strong relationship is how you get around providing care that is not in the patient’s best interests or desires. 

A: Beck—I think a lot of physicians make the assumption that patients have the same goal which is to make sure that they’ve exhausted all of their treatment options before passing away. That may be patients’ goals initially, but as quality of life declines, sometimes those goals of care actually change. And learning to ask about those and incorporate those into treatment plans, that’s the process that we’re still working on. 

I want everybody to have a good death, one where they entered the last phase of their life knowing that they did their best, and they feel like they have been a success at battling their disease and not a failure. Too many patients agree to treatments because they misunderstand the intent of therapy and what can actually be gained, or because they don’t want to appear like a quitter to their family or healthcare providers, not because their heart is in it anymore. Then when the disease progresses, they creep off to hospice and feel like failures. I hate for their end of life to feel like they have disappointed their family or their health care providers by not ‘beating their disease’. 

A: Sheetz—Developing a relationship and having a goal-directed conversation is all about communication and that’s what we’re trying to teach here--communication skills. 

Q: What can we do better early on to train providers? 

A: Sheetz—Anything that increases humanism and human connection in the training of young doctors is a wonderful thing. And that should include all disciplines--nursing and social work and everybody who interacts with people in the health care setting. 

A: Beck—It’s the mindset of being more of a partner with your patients, rather than having it be a paternalistic relationship. If you’re shoulder-to-shoulder, viewing life from your patient’s perspective, you’re a true partner in their care.  Helping providers learn a patient-centered approach, rather than a disease-centered approach to therapy is key. 

Q: A lot of people are overwhelmed with their day jobs and the energy they put in, especially with physicians. How do we convince people to want to continue their medical education? 

A: Beck—One of the things that we like about U-CoPE is that when you put 25 people in a room for four days, , they develop relationships that then become a supportive and collegial network for them as they go back to their jobs. I think that support  helps.  Developing skills that allow providers to connect with patients in an arena that doesn’t always involve prescribing a medicine or procedure adds to meaning in that patient’s life, then it brings back a sense of control and hopefulness for both you and for the patient.  Those two things are really important to help move this whole field and the importance of these conversations forward. 

Q: What are the skills that people need to continue to learn? 

A: Sheetz—Curiosity is the real key to getting people to broaden their scope and their skills. Surgeons operate and pathologists use microscopes and oncologists have their chemotherapy. For palliative care docs, our skill set is our conversations. 

A: Beck—Curiosity about what the patient’s feeling and curiosity about whether or not the patient and their family felt like the care they received was what they needed or wanted. Curiosity about why different cultures respond differently. Curiosity about, “I felt awkward during that encounter, what could I have done differently?” That’s the real key to getting people to broaden their scope and their skills. 

Q: What does it mean to be a student? What does it mean to be a teacher? 

A: Sheetz—Well, to me, it’s a two-way flow of information. I always learn things from our students. Being a teacher means stimulating that curiosity in people and having an exchange of information that’s up, down, backwards, sideways, crossways. 

Q: What do you think is the most important skill a health care provider needs to have today? 

A: Beck—Resiliency. If your sense of fulfillment for your job comes out of just the ones that do well, then that really limits your impact. But if your sense of resiliency comes from actually helping patients along the path and supporting them in ways that aren’t always typical, that will add to your resiliency and satisfaction with your work. Having people who support you and value what you do is important for resiliency. 

A: Sheetz—We need to teach multiple disciplines to work as teams rather than in silos. Typically, medicine has been much more hierarchical. And it’s hard to work as a team when you’re in a hierarchy. The team has to be more flat. The input of each team member is equally valuable. 

Q: What do you feel is your greatest contribution to health care? 

A: Sheetz—For me it comes back to humanism--the ability to see the person beyond the problem. One of the things I’m most proud of about UCOPE is the collaboration. We’ve pulled people together with lots of different interests and competing obligations and managed to make it work pretty darn well. 

UCoPE’s upcoming 2017 sessions include: 

  • January 10-13
  • May 9-12
  • September 12-15 

For more information about UCoPE: continue.utah.edu/proed/palliativecare

To register for this class or to get more information please contact Kristen Copeland at 801-662-4779 or Kristen.Copeland@hsc.utah.edu.

 

By: Shelley Miller

Shelley Miller is a writer for University of Utah Health Sciences.