The Expanding Scope of Palliative Care and Hospice: The Need for Behavioral Medicine Integration

James Gerhart, PhD; Sean O’Mahony, MB, BCH, BOA; Channing Tate, PhD; Megan Wisenant, PhD; Kathrin Milbury, PhD; Karena Leo, PhD - Palliative Care SIG

Twentieth-century advancements in safety intersected with innovations in prevention, diagnosis and treatment to significantly extend lifespans (Ernecoff & Price, 2023). As result, many people who would have died after acute injury or infection instead live for extended periods of time with serious and life-threatening illnesses that involve pain, somatic symptoms, cognitive complaints, and psychological distress. Although modern palliative care, and the related field of hospice, developed around the management of cancer-related pain, it is now relevant to the care of many life-threatening conditions including cardiovascular disease, COPD, dementia, diabetes, and renal disease. Palliative care is not just transdisciplinary, but interdisciplinary in nature with a focus on value-based, whole person care including spiritual and existential struggles.

The World Health Organization (2020) estimates that each year, nearly 60 million people could benefit from palliative care services that support their decision-making, pain and symptom management, and psychological well-being. Most people with serious illnesses do not receive these services, and even fewer do so in a timely manner. Barriers to palliative care appear multifaceted, and intersectional, and are often an outgrowth of misconceptions among patients, caregivers, and healthcare professionals. Palliative care has been challenging to define because it is a rapidly expanding interprofessional service that is built around a context-dependent, holistic, and functional philosophy of care. Arguably, many forms of healthcare and behavioral medicine could be deemed palliative in nature to the extent that they aim to ease the symptoms and suffering of people with serious illnesses without curing the underlying condition.

Given the fuzzy and dynamic conceptual boundaries around palliative care, it is unsurprising that palliative care is often conflated with hospice, and difficult at times to differentiate from related professions such as psychosocial oncology.  At the point of practice with individual patients, the presence of complex and serious medical and psychiatric comorbidities require transdiagnostic interventions to coordinate care for pain, symptoms, and treatment side effects stemming from multiple conditions and interventions. To illustrate, a palliative care mental health specialist trained to assess and treat psychiatric illness may routinely treat patients with organ failure who also need assistance managing their non-malignant pain.

Hertler and colleagues (2024) adopted a “Hub and Spoke” model to train interdisciplinary professionals at The University Hospital Zurich, Switzerland from six specialty areas: cardiology, geriatrics, hemato-oncology, internal medicine,  neurology, and oncology. Within this model,  dedicated professionals from each specialty area were trained in palliative care competencies to serve as a link to the palliative care service. The goal was to establish professional contacts within specialty areas who could share information on palliative care processes (e.g., symptom management strategies) with their colleagues on a more regular basis.

The “Hub and Spoke” model appears promising for enhancing integration across professional specialty areas.  Quill and Abernathy (2013) distinguished primary palliative care from specialty largely around the level of patient complexity. Taken together, any professional area touching on serious illness should aim to expand palliative care competencies around routine pain and symptom management, the management of psychosocial distress, and the coordination of care around a patient’s preferences and prognosis. Referral and consultation with specialistic palliative care may be required Specialized palliative care competencies are often required when pain and symptoms are non-responsive to typical treatments, when psychiatric symptoms are severe and/or chronic, and when conflict, and ethical dilemmas are challenging for clinicians to resolve. Notably, the commonalities of patient existential distress, caregiver attachment anxiety, and provider burnout often cut across diagnostic boundaries.

This “Hub and Spoke” model appears to provide a parallel framework for considering cross-SIG collaboration to support research and training around palliative care and serious illness within SBM. Figure 1 is informed by Hertler and colleague’s model, and highlights just a few of the many viable cross-SIG collaborations involving palliative care. Our membership sees a wealth of opportunities for partnership with our colleagues in other SIGs particularly around enhancing the evidence-base around pain and symptom management in serious illnesses.  We seek answers to questions such as, “How do we engage patients in decisions about their end-of-life care when they are skeptical of the medical establishment?”, “What interventions can efficaciously ease the distress experienced by family caregivers?”, “How do we enhance access to palliative care for patients with serious mental illnesses who have difficulty advocating for themselves?”, and “To what extent do psychosocial treatments ease pain and somatic symptoms, and by what mechanisms do these treatments operate?” Our overarching goal is to train the next generation of clinicians and researchers who will support patients and families facing challenging decisions about complex interventions and life-sustaining care. We look forward to partnering with others who are interested in finding answers to these questions while supporting the next generation of trainees.

References:

1. Ernecoff, N. C., & Price, R. A. (2023, August). Concurrent Care as the Next Frontier in End-of-Life Care. In JAMA health forum (Vol. 4, No. 8, p. e232603).
2. Hertler, C., Feuz, M., Schettle, M., Theile, G., & Blum, D. (2024). Hub and Spokes—Implementation of Basic Palliative Care into University Hospital Practice—A Pilot Study. Journal of Palliative Medicine, 27(7), 926-929.
3. Quill, T. E., & Abernethy, A. P. (2013). Generalist plus specialist palliative care—creating a more sustainable model. New England Journal of Medicine, 368(13), 1173-1175.
4. World Health Organization. (2020, August 5). Palliative care. https://www.who.int/news-room/fact-sheets/detail/palliative-care