During COVID-19, I began doing family ancestry research. I spent many memorable days talking with my 88-year-old mother about her life as a young girl during the Depression, including the kind of health care that was available at that time. She shared her memories of her family doctor, a man who also cared for her mother during her childhood. This doctor knew a great deal about the family and was well-positioned to support them as various family members developed diseases and died. We compared those memories to health care today, which typically involves going to numerous doctors with varying degrees of coordination, some good, and some not so good. My mom asked me why they don’t coordinate better and share information to make it easier on older people? I told her that this a goal for palliative care – to provide the best care possible, spare patients and caregivers unnecessary stress, and improve quality of life. This conversation was timely as it occurred just prior to the National Symposium for Academic Palliative Care Education and Research which was held March 2-3, 2023, in Long Beach, CA.
Changing Healthcare Education
The Importance of changing current healthcare education to encourage better communication among health care professionals was a primary focus at the symposium. Drs. Katie Robinson and Alyssa Erikson provided a pre-symposium workshop on infusing palliative care curriculum into nursing essentials – a new requirement of the CCNE. Dr. Veronica Young, Director of the Center for Interprofessional Education at the University of Texas at Austin, gave the opening plenary where she engaged the symposium participants in communication activities designed to demonstrate how to integrate interprofessional learning into education, practice, and our communities. Our goal in inviting these speakers was to provide the tools healthcare educators need to change the way health care is delivered.
But Dr. Robinson did more than teach/learn about IPE at the symposium. The following week, she worked with Social Work professors Blake Beecher, Lorene Ibbetson-Flanagan and Jeannine Guarino, Kinesiology professor Deanna Schmidt, and Philosophy professor Michael McDuffie to provide an interprofessional education training experience on palliative care for 90 students from nursing, social work, and kinesiology. This training was sponsored by the CSU Shiley Haynes Institute for Palliative Care campus partner office at CSU San Marcos. This partnership is a great illustration of the incredible work being done by CSU faculty and the education and support that the symposium provides for the work that they do in palliative care. By applying the great information we get from this symposium to activities in the classroom, we will move beyond merely sharing of information to actively changing the training of our future health care professionals.
Challenges Facing Caregivers
Conversations with patients also vary in terms of engagement with their caregivers. Palliative care recognizes the integral role of those loved ones who are providing the care patients need. Sometimes when healthcare professionals become too focused on the diseases their patients present, they fail to engage the caregivers in these conversations. The plenary session featuring Jason Resendez, CEO and President of the National Alliance for Caregiving, addressed these issues and more. He shared data regarding the challenges of family caregivers across the U.S. and the pending legislative efforts to address their needs more fully.
Data from the AARP and NAC Caregiving in the US 2020 study revealed that there are currently 53 million adult caregivers over the age of 18 in the US. This means that approximately 1 in 5 adults are providing unpaid care to an adult with health or functional needs. These statistics do not include the 5.4 million youth caregivers under the age of 18 who are also providing unpaid care. What is important to consider is that these figures are likely gross underestimations as COVID-19 has increased the number of people needing care; 1 in 13 adults in the US. are estimated to have “long COVID” symptoms.
During the caregiving plenary, teachers, researchers, and practitioners were encouraged to think about and share ideas about how we can work together to provide greater understanding of, and support for, caregivers who are providing assistance to those they love. This work must be informed by the needs of the community. The pre-symposium workshop provided by Dr. Sheria Robinson-Lane took attendees through a highly interactive session to learn how to engage their communities in research. How can we design better health systems if we don’t understand the needs of the patients and those who are caring for them?
Better Communication Among Health Care Workers and Employers
Finally, better communication among healthcare workers and their employers was also highlighted at the symposium. How does caring for the seriously ill impact the professional caregivers, the nurses, doctors, social workers, chaplains, physical therapists, and others who consistently show up in mind, body and soul to provide the help patients and families need? Our closing plenary speaker at the symposium, Dr. Christina Maslach, author of the Maslach Burnout inventory, described how we need to not only address burnout in individuals, but in the healthcare systems in which they work. She emphasized the need for us to rethink our relationships to our jobs with a goal of creating better matches between those providing healthcare and the workplace. Her latest book, “The Burnout Challenge: Managing People’s Relationships with Their Jobs,” was given to symposium participants so that they could begin to examine these issues in their own lives.
So, in answer to my mom’s question about why health care professionals don’t coordinate as much as they should, I could tell her that we are well on our way to doing just that. The CSU Shiley Haynes Institute for Palliative Care is deeply committed to increasing communication among healthcare professionals, patients, and their caregivers. We do this by providing excellent educational opportunities for current professionals, future professionals, and communities. We look forward to the time when excellent collaboration among healthcare providers, patients and caregivers is the norm. We may not return to home visits by our family physicians whom we’ve known for a lifetime, but we can get to exceptional coordination of care. It is a goal worth striving for.
CSU Palliative Care Pathfinders
Finally, an update on the CSU Palliative Care Pathfinders program which provides support for students pursing degrees while dealing with their own serious illness, the serious illness of a loved one, or grieving the loss of someone close to them. Our friend, Vance Kekoa, rode his bike 100 miles on April 16th, 2023, to raise awareness of our student pathfinders.