By Aldebra Schroll, MD
As a profession, palliative care faces the challenge of limited numbers of specialty trained, certified experts, despite increasing demand for our services. In 2019, the Center to Advance Palliative Care in collaboration with the National Palliative Care Research Center released a State-by-State Report Card on Access to Palliative Care in our Nation’s Hospitals. Key findings from their report card found overall growth in the availability of hospital-based palliative care teams, observing that nonprofits were more likely to offer palliative care.
However, these specialty teams were concentrated in urban areas. Meanwhile, rural areas offer very limited services. Where patients live determines their access to palliative care services. Only 20 states scored “A” overall, most of them in the heavily urban Northeast and upper Midwest. Only 36% of the nation’s small hospitals, which serve most rural regions, reported offering palliative care.
Our current healthcare system remains focused on disease-specific treatment. The care is often fragmented and burdensome; without a focus on whole persons, their individual goals, and quality of life considerations. In summary the report found, patients do not have reliable access to palliative services, and the current workforce numbers are inadequate to meet the need. Additional challenges identified in the report include insufficient clinician training, lack of knowledge about services among the public and our colleagues, insufficient financial incentives with ongoing need for research and development of an evidence base.
The COVID-19 pandemic has only exacerbated the situation, highlighting the need for broader availability of palliative care services. It is imperative that we address the disparity in access between rural and urban medical environments. Many of our elders relocate from expensive urban centers to retire in rural areas. However, they leave behind more robust healthcare services. This came up frequently in my primary care practice when newcomers were surprised to learn they might have to travel to access a variety of specialty services.
One avenue to enhance access to palliative approaches is through an emphasis on training more frontline workers in primary palliative care; offering basic skills development such as addressing routine discussions around goals of care and code status, introducing hospice and basic symptom management. These skills can be taught to all providers from multiple areas who work with seriously ill populations. The CSU Shiley Haynes Institute for Palliative Care offers a robust, affordable, and accessible online curriculum in Primary Palliative Care Skills for Every Provider with this goal in mind.
Broader primary palliative care training will benefit providers, patients and institutions. Effective communication is critical to successful outcomes and when missing a leading cause of lawsuits. Once we have lost the trust of patient and families, it is very hard to regain. In my role on an inpatient palliative consult service, we were often called in to meet with angry families after medical errors or communication breakdowns. My first objective in these situations was to listen, simply listen. I have found that feeling heard is one of the most powerful experiences we offer patients. This approach often went far to cool an overheated situation.
Better, of course, would be to ensure clear and trustworthy communication before such breakdowns occur. However, when it comes to communication challenges, very few providers have had any formal training in sharing bad news or leading difficult conversations. There is fear around time constraints and dealing with the emotions likely to come up. These struggles can add to clinician distress and burnout.
The good news is that conversation techniques can be taught and retained. Breaking bad news and managing goals of care discussions are recognized as special skills worthy of attention that will enhance the provider-patient relationship. With the broader use of palliative care skills, more patients will benefit; allowing specialty palliative services to focus on more complex situations, those with difficult family dynamics, conflict over goals of care, and more complicated symptom management needs.
In my time as palliative medical director; I took every opportunity to provide skills training to colleagues, recognizing that our small team was not able to meet the growing need for services. Our facility responded to the Camp Fire in the neighboring community of Paradise, CA, followed by the emergence of the COVID-19 pandemic. The palliative team was in high demand with a patient population under extreme distress. When time permitted, I would attend our ICU rounds offering small “nuggets” of palliative teaching. My team created self-paced tools for co-workers, participated in the skills fair and a variety of community symposia. Broadly available communication and palliative care skills training is available from the CSU Shiley Haynes Institute for Palliative Care, VitalTalk, the Institute for Healthcare Communication, and, if your organization is a member, the Center to Advance Palliative Care.
Prior to the pandemic there was a recognition of pending shortage of palliative care specialists; this has only been exacerbated over the last two years. There is growing awareness of the value of palliative care; but it remains a challenge to translate our value to leadership especially in the midst of crisis. Forward thinking institutions will continue to grow their palliative care specialty teams but also emphasize the training of all staff in primary palliative skills. I envision a time when our palliative care approaches are standard of care and widely available across all settings.