Time for Palliative Care to Stretch Beyond the Patient-and-Family

This New Year has felt a bit like déjà-vu all over again. As a friend recently quipped, “It’s not 2022, it’s 2020 two!” We worry for our frontline colleagues as they and their resources are stretched to breaking. Behind the immediate ongoing crisis is something very concerning – the depletion of the workforce equipped with palliative care skills that have proved to be so crucial in this era. I’m eager to share with you the results of a months-long reexamination of our mission and vision, which has re-dedicated us to doing our part on behalf of our colleagues.

Last fall, our Institute team, CSUSM University and Extended Learning Division leadership, our National Advisory Board, and selected stakeholders participated in a “lightning round” strategic planning process, funded by the California Health Care Foundation and expertly facilitated by Monique Parrish, MSW, MPH, DPH, of LifeCourse Strategies. Emerging from that process, we finetuned our mission and vision:

Mission: The CSU Shiley Haynes Institute for Palliative Care provides high-quality education to healthcare professionals and students, builds advocacy, and promotes research to advance the care of persons living with serious illness and their communities.

Vision: We envision a world where every health professional has the knowledge and skills to provide exceptional whole person care, and care is at the heart of healthcare.

So let’s look at this:

Provides high-quality education. All our courses are developed and delivered by experts, all currently working in the field offering abundant knowledge and real-world experience. The content is peer-reviewed, professionally edited, and built in an interactive learning management system designed to deliver real learning in a flexible, affordable environment: more robust than one-off webinars or short topical courses; much more affordable and accessible than comparable academic or on-site clinical instruction.

To healthcare professionals and students. Our catalog of online courses is available to any working or aspiring healthcare professional. We also work with a network of California State University campuses to increase integration of palliative care content into preprofessional curriculum across disciplines. Our growing Faculty Toolkit offers “grab-and-go” resources such as slide sets, case studies, discussion prompts, quiz questions, and more for faculty use. Our National Symposium for Academic Palliative Care Education and Research promotes the work of national scholars in building the evidence base for palliative care and innovating teaching methods.

Builds advocacy. Advocacy – as in taking every opportunity to support a cause – comes in a lot of varieties. I represent the Institute on a dozen or so collaborative regional and national committees or workgroups committed to advancing the quality, accessibility, and sustainability of palliative care. Our CSU campus partner institutes support numerous community-oriented programs championing the benefits of palliative care and connecting patients and caregivers with needed resources.

Promoting research. This is our most aspirational mission. The evidence base for palliative care is still relatively thin, but growing. The Institute’s $50K Seed Grant program long-funded small-scale projects by early-career investigators, some of which went on to attract bigger funding based on results. We are actively seeking a partner to revive that program. In the meantime, we will work with our CSU campus partners to promote palliative care as a fertile area in which to conduct faculty, graduate, and undergraduate research, as well as contribute to statewide and national conversations on research agendas and allocation of funding.

Persons living with serious illness and their communities. This is where it gets pretty exciting! A fundamental principle of palliative care is that people are LIVING WITH serious illness. The illness may eventually bring about the person’s death, but in the meantime, the person is alive! The commitment of palliative care is to support the quality of that life to the fullest extent possible by controlling pain, aggressively treating symptoms, and offering psycho-social-spiritual support. And not just to the person with the illness, but to their . . .

Many (nearly all?) palliative care entities will follow this with “families.” This is based on the other fundamental principle of palliative care that persons who have families, of origin or choice, experience their illness in the context of that family; the illness affects the members of that family too, and families need support and care too. Yes!

But as one of our strategic planning group members persistently pointed out, not everyone has a family. And adding the language “and families” could be heard as meaning “only when they have a family.” I confess my knee-jerk reaction was to dismiss this concern as unlikely and to say, as many of my colleagues have often said, “ ‘family’ can be whoever the person says it is; it’s not meant to mean only biological family.” Thankfully, our group member kept pushing, leading us to turn this concept upside down, inside out, and look at it in a new light.

What if, we asked ourselves, we extended this care even beyond a loose definition of “family” and said “community” instead?

Pretty much people, even if they don’t have a family, have a community. Even unconscious, “unrepresented” patients in the ICU have a community – their dedicated professional caregivers. Even isolated elders living alone have a community – their neighbors. Even when there isn’t much “communion,” there is still community.

Many persons have more than one community: family, neighbors, caregivers, friends, colleagues, faith community members, social group members, and so on. And those communities influence the person’s experience of illness and those communities have needs that can be served by the presence of palliative care provided to the person.

Inspired by this thought, we discussed how it is time for palliative care to stretch beyond even the “patient and family” as the unit of care, to a broader, more inclusive focus on the “person and their communities” to not only meet the needs of the person, but recognize and address the broader social context in which the person is living with their illness.

But what does this mean? How do we do that? Certainly this means attention to the “social determinants of health” – and illness, for that matter. For clinicians, it may mean broadening the lens of assessment, stretching the definitions of psycho-social-spiritual needs, extending attention beyond the four walls of the person’s immediate domicile. For us and other educators, certainly it means ensuring that social context and attention to disparities, diversity, and equity are infused throughout our work. We’re working on the details of that now, as we flesh out the principles and major goals identified in our strategic planning.

How might attention to “person and their communities” play out for you and your institution?

I believe I can speak for the Institute team, out of this inspiring strategic planning process, we have come away with a renewed commitment not only to the fundamental principles of palliative care and the high-quality education required to deliver it, but to a bold vision that – when we and other organizations committed to palliative care are successful – will make the social case for palliative care in an undeniable way and truly put care back in the heart of health care.