How Nurses Can Help Promote Health Equity in Palliative Care
On May 11, 2021, the National Academy of Sciences, Engineering, and Medicine (NASEM) released their consensus study, The Future of Nursing 2020-2030: Charting a Path to Achieve Health Equity (“NASEM report”). Delayed by a year due to the pandemic, this report builds on the Institute of Medicine’s 2010 The Future of Nursing: Leading Change, Advancing Health. The focus of the NASEM report is that health and well-being can be improved by working towards health equity, and it's a combination of a nurse’s skills, knowledge, and dedication, that can help us get there.
Within the United States, there is an increasing aging population, increasing lack of access to primary care, and increasing clinician shortages. Nurses are the largest sector of the health professions, with 4 million in the field. (NASEM 2021; American Nurses Association 2021; American Association of Colleges of Nursing 2019). With their leadership, frequent frontline access to patients and collaboration with their interprofessional colleagues, nurses have the capacity to lead and affect change—whether within their teams, organizations, or communities. Moreover, with increased numbers of individuals with behavioral and mental health conditions, increased numbers of older adults, and workforce shortages in health care, nurses are needed now more than ever before. To be the most effective, they must be allowed to practice to the full scope of their education, licensure, and scope of practice.
With their leadership, frequent frontline access to patients and collaboration with their interprofessional colleagues, nurses have the capacity to lead and affect change—whether within their teams, organizations, or communities.
The NASEM report focuses on health in a broad lens: individuals within the United States have health needs, which include medical and social needs, or social determinants of health (SDOH). It suggests that health care moves beyond the biomedical model, which attends solely to the physical aspects of illness and disease. Expanding this attention to the complexity of an individual (and their community) allows us to focus on the whole person.
The report recognizes that individuals are physical, emotional, psychological, spiritual, cultural, and social beings—similarly viewed within palliative care. This is an important recognition by NASEM; in the biomedical model, social needs are often medicalized rather than considered within the context in which a person lives. For instance, a patient with diabetes and limited financial resources may be labeled with a negative diagnosis of “non-compliance with their diabetic medications”, rather than understanding the individual through a lens of SDOH, which would state, “limited insurance, limited financial resources, relies on public transportation, and lives in a pharmacy desert, and therefore will need support to procuring medications.”
The report recognizes that individuals are physical, emotional, psychological, spiritual, cultural, and social beings—similarly viewed within palliative care.
Assessing SDOH is Essential
Considering one’s social needs may be overwhelming, but that does not give a clinician permission to ignore them. Palliative care has played a role in health inequities. (Barret, Hasen, Bethea, and Johnson 2020; Johnson, Walton, Levine et al, 2020; Gardner, Doherty, Bates et al, 2018). Just as the assessment of pain has become an essential element of a palliative assessment, the palliative care community must implement a concerted strategy to ensure that an assessment of SDOH becomes an essential element. In alignment with the NCP Clinical Practice Guidelines, this means performing a more robust social history beyond partner status, family, insurance, and employment to include a further assessment of SDOH to include a minimum of home safety and transportation availability, to access to food and medication.
Considering one’s social needs may be overwhelming, but that does not give a clinician permission to ignore them.
Indeed, the foundation of the NASEM report is rooted in the concept that “a nation cannot fully thrive until everyone—no matter who they are, where they live, or how much money they make—can live their healthiest possible life, and helping people live their healthiest life is, and has always been, the essential role of nurses.” This statement speaks to the fact that if the SDOH are addressed, health equity can be addressed to ensure individuals can lead healthy lives. The correlation of this statement is that is if SDOH are not addressed, health equity is not addressed, and individuals lead unhealthy lives and a nation will falter. Specific to palliative care, individuals who experience health inequity also experience more chronic and serious illness, as limited access to care means late diagnoses and treatment (Williams, Lawrence and Davis 2019, NASEM 2019a).
Charting a Path to Health Equity within Palliative Care
The overall strategy to health equity within the NASEM report is a multifaceted approach. Fundamentally, change is necessary, as the status quo has been ineffective. Due to the increasing needs of the aging populations, increased behavioral and mental health conditions, and workforce shortages, any strategy must be multidimensional. Importantly, it is not the responsibility of nursing nor palliative care to solve health disparities; however, both have major roles because of broad contact with individuals who live with serious illness. Ultimately, it is a collaborative, coordinated approach to optimizing opportunities to change the current health system.
First, this means the development of new models of health care, shifting from a focus of illness, where care starts when an individual is sick, to care that promotes wellness, the prevention of illness, and overall public health. The public health model for palliative care has not been the approach in the US, although the World Health Organization (WHO) has followed a public health model for developing palliative care in developing countries around the world. (Callaway, Connor and Foley, 2018). Therefore, a consensus public health strategy will need to be considered in which all disciplines are involved in leading, planning, and implementing such initiatives. Most importantly, any work should include explicit priorities and across interprofessional practice, education, leadership, and health policy engagement. Otherwise, a palliative care health equity agenda continues to mirror health inequity by lack of inclusion and diversity, continuing a hierarchical approach.
Then, palliative care as a field will need to agree on a shared definition of SDOH. With many definitions put forth by federal agencies, palliative care will need to consider what is most appropriate for the field. It does not need to recreate such resources, rather there can be more specific recommendations based on the evidence and science. However, it is essential to have representation from all health disciplines (clinical, administrative, community, business, legal, etc.), to promote a robust definition that is meaningful to the individuals receiving care, rather than the providers of care. Palliative care teams can start by screening and assessing individuals with serious illness, and their families, according to the NCP Clinical Practice Guidelines.
Finally, a shared agenda for addressing SDOH to promote health equity within palliative care must be created. The report states, “all nurses, at all levels, and no matter the setting in which they work, have a duty and responsibility to work with other health professionals and sectors to address SDOH and help achieve health equity.” (The Future of Nursing 2020-2030: Charting a Path to Achieve Health Equity, p. xv) Just assessing SDOH is not enough; the challenge is to address them. Because communities are unique, this cannot be done by a recipe approach. Rather a palliative program will need to collaborate and innovate with communities they serve to develop creative community-based solutions, which will have more sustainability and ownership by the community.
Strategies for Palliative Care to Integrate Health Equity Principles
As a specialty, palliative care is interprofessional and has the responsibility of working together towards the same mission and vision. Palliative care programs need a coordinated strategy for health equity as well. Here's where we can start:
1) Palliative care programs must include health equity as part of their program mission which would speak to diversity and equity within their team and culturally sensitive care delivery.
The palliative care workforce, itself, reflects a lack of diversity and equity. Without health equity as a focus, there is no common purpose or goal to achieve. From this will evolve strategies for individual and team assessment, and strategies for enhanced understanding of health equity and health disparities. Because health equity has a focus on health, a team assessment will naturally emphasize health and well-being of team members, which is necessary for sustainability within palliative care
2) Health equity is based on the valued of community and public health.
To move within the community, palliative care must value the context of community-based palliative care being the locus of care. It is in the community where individuals live, work, and play; bringing palliative care to the individuals offers a more sustainable, long term solution rather crises oriented care in the acute care setting. There are so many untapped resources in the community that with attention and care focus community ownership and success. This will mean making care more convenient by bringing palliative care to the community, rather than making it more convenient to providers by forcing patients to come to us.
3) Palliative care programs need to perform a community assessment as suggested by the NCP Clinical Practice Guidelines, to review individuals unrepresented in their program, specifically to determine which individuals with serious illness are and are not being served, and why.
Performing such a review should include a community assessment of all the geographic, demographic, and disease specific communities they serve, as well as a review of the SDOH of these communities. And it should include a review of the community partnerships and collaborations in place. Attention should be paid to how these collaborations were established—by the community or by the palliative care program.
4) With the projected shortages of palliative care providers, palliative care programs lack the bandwidth to care for all individuals.
Palliative care programs therefore need to promote basic palliative care education and skill building for all clinicians, and foster partnerships with the community to care for communities that are underserved. Moreover, work will need to include education and development skills in the community so that spiritual leaders, community health staff, and other community organizations focusing on the communities where individuals live. This means moving health care out of the academic medical center, back into the communities and placing value back on care that originates in the community—from community centers, public health clinics, faith-based initiatives, schools, and the workplace—to promote accessibility and palliative care that is alignment with the resources and cultural norms of that community. (NASEM, 2019a)
5) Palliative care programs need to develop new models to care, meeting challenging times and the rising tide of patients.
Specifically, this means design better payment models that address the social aspects of care and recognize reimbursement services of nurses, social workers, spiritual providers, and supportive services. This reimbursement would promote care for individuals within their communities and help them remain at home as their conditions become more advanced, where most individuals desire to be. (Cai, Zhang, Guerriere, and Coyte 2020; Burge, Lawson, Johnston, et al. 2015)
6) Palliative care programs can promote the lifting of barriers of scope of practice, which would allow all team members to practice at the top of their education and licensure.
This is particularly specific to advanced practice registered nurses, physician assistants, nurses, social workers, pharmacists, and other allied professionals who are often involved in community-based palliative care program development, and who often serve in rural and community programs. This promotes overall equitable access to palliative care since many of these providers are often located in community programs.
7) Palliative care programs have learned about what it means to be in crises as evidenced by care delivery in humanitarian crises, natural disasters, and pandemics.
Such delivery is public health delivery of palliative care in an extreme form, and specific to a community. There are many lessons learned that need to be codified to allow more efficient, rapid, response to the palliative care needs within such disasters. Often, there has been rapid innovation within these times that demonstrates how nimble palliative care can be to addressing the needs of a community. Many of these innovations can be made permanent in conventional times.
Achieving health equity is not a novel goal. Rather, given the current times, it is now more a priority. This is particularly true of the social context of our times, as well as in the current condition of the US health system–a system in serious need of change. The NASEM report offers a new renewed focus and commitment to the path of health equity. It focuses on the capacity, expertise, and collaboration of nursing and other disciplines, which are often overlooked, to affect change. It also means letting go of the way things have always been done and moving to the way things can be done.
Nurses, as part of palliative care teams, can affect change in their teams and communities. Together, using their collaborative skills, nurses and palliative care programs can facilitate change to promote better outcomes, process, and care delivery that reflects more equitable care. The process becomes the right care with the right focus, for the right patient, at the right time–which means changing how work is done. It means making the care reflect the patient’s needs instead of making it work for palliative care. Instead of slotting the individual with serious illness into a palliative care pathway, the focus returns to understanding the individual, their caregiver, and the community they live in and how that guides care.
Together, using their collaborative skills, nurses and palliative care programs can facilitate change to promote better outcomes, process, and care delivery that reflects more equitable care.
In terms of patient care, palliative care programs cannot work alone in silos, as health equity demands collaboration. Each palliative care program will need to create a strategy with realistic timelines. They must research and review the different resources for the communities they serve and partners with those entities. They must allow the community to say what they need; not what palliative care thinks they should need. Additionally, equitable palliative care begins with a more robust assessment of the cultural aspects and the SDOH of quality palliative care, which in term may lead to care with better outcomes. This will take time to consider the best assessment tools which must be developed collaboratively with other health specialties.
In terms of health equity within palliative care teams, each program must examine equity among team members. This mean reviewing how palliative care teams work and ensuring all team member’s voices are reflected, honored, recognized, and supported for leadership in clinical practice, education initiatives, and research. To support optimal care delivery, full scope of practice and education of non-physician practitioners must be supported, especially with the palliative care workforce shortage. Additionally, health equity means ensuring team well-being in order to better provide quality and safe care for patients. (NASEM 2019b; Perlo, Balik, Swenson et al. 2017). All clinicians must have time away from clinical care, even if this has not been the norm, with the ability to participate in non-clinical activities such as research, education, leadership, or policy work of their choice.
Our field must start somewhere and consider what can be done today, this week, this month, the next six months, etc. Only in this way will palliative care participate in meaningful change.
Health equity is a social justice and moral issue. The specialty of palliative care was built on social justice and moral issues of inadequate pain management for cancer patients and inadequate care for individuals with advanced illness. It must now put equitable access to palliative care under its purview. Of course, health equity is a long term process that will take years, hence the tile of the report, Charting a Path to Achieve Health Equity. However, our field must start somewhere and consider what can be done today, this week, this month, the next six months, etc. Only in this way will palliative care participate in meaningful change. To do otherwise is to continue participating in and continuing to allow health disparities and health inequities.
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