End-of-life conversations are always tough — even in the best of circumstances, like when an individual has clearly articulated their final wishes. Unfortunately, those conversations don’t always happen until it’s much too late. Worse, they can can sometimes take place in a hospital setting with medical staff who only just met the patient. For doctors, supporting these patients facing a serious illness or the end of life can be difficult, even traumatic, especially if they lack adequate skills and training. Now, the University of Arizona Health Sciences is hoping to change that by providing end-of-life care education.
Next Avenue talked to Dr. Mindy Fain, co-director of the University of Arizona Center on Aging, who is leading the development of the program, which is being funded by a $500,000 grant.
Next Avenue: Why is this kind of program necessary? And what are some of the challenges facing medical students when it comes to confronting seriously ill patients’ end-of-life care?
Dr. Mindy Fain: The goal of this of this grant is to, on the highest level, fundamentally change the way we talk about death and dying and change the way in which we deliver care. We will address it by developing a serious illness and end-of-life care curriculum toolkit including cases that faculty can plug into their existing courses.
We know from surveys that medical students lack EOL [end-of-life] competency and desire the competency — which was a very positive thing. Over seventy percent recognized that they didn’t get enough training and that they saw it as a as a major gap. And students in Colleges of Pharmacy, Public Health and Nursing, when surveyed, also said the same thing. So, there was clearly a need across health professions.
The unique part of this grant, and what I think we’re most excited about, is to prepare the interprofessional workforce. What that means is that the training is developed by health professionals, and it’s delivered to health professionals.
We really saw the need for a common language, a common culture, and so we’re bringing together leaders, experts in this area, from across the Health Sciences colleges – including nursing, medicine, pharmacy and public health — to develop that common language, common cases and then going back to their own schools or disciplines and developing what we’re calling ‘discipline specific’ cases.
For instance, even within medicine, you can imagine that those clinicians who are in primary care would have a different need, a different skill set, for the care of their patients, versus the needs of a surgeon. So, we want to make sure we maintain a common language, but then meet the needs of the unique disciplines. We will then take those discipline-specific cases and assure an interprofessional focus, so students can learn the importance of team-based care.
A goal of this program is to transform cultural attitudes about aging, serious illness and death. What does that look like in practice?
One of the major barriers to delivering good care is that health professionals don’t have the language — we don’t have comfort with how to begin that conversation and also how to respond to questions that patients and families might have. So, it’s really giving them the tools to be able to engage in both serious illness and end of life conversations.
And frankly, it’s across the lifespan, which is the other unique aspect of this grant and of this curriculum and toolkit.
Sometimes these programs focus either on only older people sixty-five and older or only those who have serious illness or advanced heart failure or terminal illness. We will spread the umbrella across all age groups and all ethnicities, genders — really across the complexity of all people and all stages of life, so that we start talking about this with eighteen-year-olds who are in the primary care clinic, asking, ‘Who do you trust to make medical decisions if, for some reason, you’re unable to make them yourself?’
By starting that conversation, it starts the thinking and the conversation within the family. It allows people to begin to recognize that this is a part of life, that serious illness and death and dying are a part of life.
It’s been remarkable how well received this has been. We have these conversations — the conversation is different when you’re twenty-years-old, it’s different when you’re thirty-five and may have developed hypertension or diabetes. It gets more complex as people get older and may accumulate more chronic conditions or are thinking in a different way, about how they want to live the rest of their life, how they want to live their best life.
And then the conversation just transitions into practical or serious considerations as people are nearing end of life. It’s a trajectory, it doesn’t start at age sixty-five. And that will be reflected in our curriculum.
Earlier, you talked about how health care providers want this kind of training. Can you give me a real-life example that illustrates the importance of this kind of curriculum?
I think that the ‘aha’ moment came when we asked medical students to even write their own advance care plan, their advance directive, a durable medical power of attorney, and the living will, and they realize just how hard it is.
It allowed them to start to develop an empathy for what we’re asking our patients to do. So, it put them in their patient’s shoes. I think we often see people admitted to the hospital, let’s say, who have been cared for years and years at the primary care clinic, with advancing serious illness, but the conversation never occurred. And when we ask why, it often has to do with communication skills, not knowing how to even begin the discussion.
Patients in surveys show over eighty percent would have wanted to talk to their primary care provider about these serious issues, but that their primary care provider did not bring it up. So, there’s a clear gap between patient’s needs and providers delivering that care.
What is your hope for this program? How would you like to see this evolve in the next five, ten, twenty years?
A key part of this effort is training health care providers how to communicate with their patients about serious and complex issues. That is at the core of this is: How to feel comfortable talking about serious illness, death and dying. We hope that over the next five, ten, twenty years that these conversations will become more comfortable and begin earlier and earlier in our patient’s lives, across their stages of life.
And we hope that students will become more comfortable and skilled in talking with older adults about what matters most to them and will work together with their patients and families to provide the care to achieve their goals.
We hope, through our curriculum, to contribute to transforming our culture around serious illness, death and dying.
Kathy Ritchie is Next Avenue’s Health and Caregiving Editor. She has spent more than a decade talking about aging issues, first as a caregiver for her own mother who had frontotemporal degeneration; then as a reporter at the NPR-member station in Phoenix. Kathy’s personal experience has given her a professional purpose, and over the years she has reported on the myriad challenges and experiences of older Americans. Many of her stories have aired on NPR’s national magazine show, Here & Now. She also produced a four-part podcast about life after dementia.