MAKE THE CASE
DESCRIPTION OF PALLIATIVE CARE
Palliative care is a relatively new specialty, first recognized in 2006 by the American Board of Medical Specialties and the Accreditation Council for Graduate Medical Education. Despite remarkable growth in recent years, accurate understanding of palliative care is still not widespread among patients or clinicians. Misperceptions, such as confusing palliative care with hospice, and gaps in knowledge about how palliative care adds value persist. Therefore, even if someone has heard of palliative care, it is best not to assume that they know what it is and how it supports people with serious illness and their caregivers.
This section of the toolkit offers a definition and outlines the core components of specialty palliative care. It also provides insights into how to differentiate specialty palliative care from hospice or primary/generalist palliative care.
Definition of Specialty Palliative Care
Specialty palliative care is medical care focusing on relieving the stress and suffering of serious illness, with the goal of improving quality of life for both the patient and the family. This specialized care is delivered by a team of trained palliative care professionals, including doctors, nurses, social workers, and chaplains, who are often supported by other disciplines. These specialists collaborate with a member’s existing medical team to provide an additional layer of support. This is usually done in a co-management model where the palliative care team is not the primary provider.*
Specialty palliative care can be delivered in various settings, including hospitals, clinics/physician offices, nursing facilities, and patients’ homes. Importantly, palliative care is distinct from hospice care, as it is appropriate for individuals at any stage of a serious illness and can be provided along with curative treatment. Members receiving palliative care are not subject to a six-month prognosis requirement, retain all their health plan benefits, and can continue with disease-focused treatments.
Reference: Palliative Care Definition | What is Palliative Care | Center to Advance Palliative Care (capc.org)
Comprehensive physical, emotional, spiritual, and social assessment
Expert management of pain and other distressing symptoms
24/7 telephone or telehealth access
Referrals to community resources
If provided in the home, environmental assessment of the living conditions
Assessment of family caregiver capabilities and directly supporting family caregivers with training, coaching, and emotional support
Expert communication addressing the priorities of patients and families, including advance care planning, goals of care, and shared decision making
Definition of Specialty Palliative Care
While there may be variation in how specialty palliative care is delivered based on the setting, team staffing, and payment models, its core components include*:
Reference: National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 4th edition. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018. https://www.nationalcoalitionhpc.org/ncp.
Specialty palliative care is a more intense, specialized form of support provided by a dedicated team of palliative care specialists, while generalist (also known as “primary”) palliative care is a more integrated, basic form of palliative care incorporated into primary care or other medical specialties. Both aim to improve the quality of life for individuals facing serious illness, but they differ in their levels of specialization and scope of practice. Representative skill sets for generalist and specialty palliative care can be seen in Table One below.
Generalist palliative care has been gaining momentum as a complement to specialty palliative care. Widely available generalist palliative care can ensure a minimum level of palliative care is available to anyone who would benefit and allow specialty palliative care services to focus on more complex situations.
Difference Between Specialty and Generalist/Primary Palliative Care
Representative Skill Sets for Primary and Specialty Palliative Care*
GENERALIST/ PRIMARY PALLIATIVE CARE
Basic case management and caregiver support
Basic management of pain and other symptoms
Basic management of depression and anxiety
Basic discussions around prognosis, goals of treatment, suffering, and code status
SPECIALTY PALLIATIVE CARE
Management of refractory pain and other symptoms
Management of more complex depression, anxiety, grief, and existential distress
Assistance with conflict resolution regarding goals or methods of treatment within families, between staff and families, and among treatment teams
Assistance in addressing cases where further disease-directed treatment may be unsuccessful
Care coordination and case management support to address health and/or social needs
Reference: Generalist plus Specialist Palliative Care- Creating a More Sustainable Model, NEJM, Quil and Abernethy, 2013
These two videos produced by the California Health Care Foundation can help you describe specialty palliative care to key stakeholders.
California’s Palliative Care Evolution: What is Palliative Care?
This video features palliative care leaders and providers who work in health plans, health systems, and the home, describing palliative care and its value.
Extra Supports for People with Serious Illness
This video features palliative care providers working in different settings, describing how they support patients and families with serious illnesses.