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In a perfect healthcare world, advance care planning conversations are initiated early in the patient journey, advance directives and health care proxies are documented, and the patient’s healthcare team has access to this information.

The reality is far from ideal. Care decisions are often made in the hospital during a health crisis. There is little time to have a thoughtful discussion between a trusted provider, the patient, and their family about illness trajectory, goals of care, and end-of-life wishes.

A growing number of hospitals have started palliative care programs to deliver whole-person care and ensure the care provided aligns with a person’s preferences; however, these interventions often come too late in the disease process to improve quality of life. Primary palliative care can play a crucial role in filling this gap.

What is primary palliative care?

Palliative care is defined by the Center to Advance Palliative Care (CAPC) as specialized medical care for people living with a serious illness that is focused on providing relief from the symptoms and stress of the illness and is provided by a specially-trained team of doctors, nurses and other specialists.

A definition of primary palliative care, on the other hand, is care that is “provided by all individuals and organizations that deliver palliative care as a component of their service, and are not part of a specialist palliative care team. Primary palliative care is provided for those affected by a life-limiting or life-threatening condition as an integral part of standard clinical practice by any health care professional.”

Ideally, primary palliative care commences in the outpatient setting at the time of diagnosis rather than close to the end of life. Primary care clinicians help patients and families articulate their goals of care and document them in the medical record – nurses have greater opportunity to facilitate advance care planning and provide palliative care interventions.

Filling the palliative care gap

Specialty palliative care that occurs earlier in the disease trajectory is shown to improve symptoms and quality of life for patients living with serious illness. Unfortunately, in many healthcare delivery systems today, this type of care is simply not available to a significant number of seriously ill patients. For the most part, hospitalization and hospice serve as the gateways to accessing palliative care services.

Additionally, racial, ethnic, and socioeconomic disparities in palliative care access persist. A 2019 report found that publicly-owned hospitals, which serve a disproportionate number of vulnerable populations – minorities, Medicaid beneficiaries, uninsured patients, and people living in disadvantaged communities, are much less likely to provide palliative care services than non-profit or privately-owned hospitals.

This palliative care gap is further driven by a combination of factors including misperceptions around the difference between palliative and hospice care and a shortage of trained palliative care providers. As the U.S. population ages, the number of people living with serious illnesses and multiple chronic conditions is rapidly increasing and bringing a rise in the need – and demand – for palliative care, only widening the gap.

Palliative care that is integrated with primary palliative care addresses these challenges by:

• Increasing equitable access to holistic symptom management across the spectrum of care
• Promoting advance care planning earlier in the disease trajectory
• Facilitating care coordination and continuity of care across care settings
• Improving the quality of end-of-life care through a collaborative, supportive care network of primary clinicians, specialists, nurses, and other healthcare professionals
• Meeting patients’ needs in a trusted setting where they receive most of their care
• Improving quality of life throughout the patient journey

Resources for primary palliative care skills

Primary care clinicians are optimally positioned to provide palliative care services to their patients with serious illnesses. Here are links to resources to help you learn more and develop your skills:

• Primary Palliative Care for Every Nurse Practitioner: A continuing education (CE) learning activity
• Primary Palliative Care Skills for Every Provider: A 24.5-hour CE/CME course
• HPNA Primary Palliative Nursing for Patients with COVID-19: A series of primary palliative nursing COVID-19 patient care guides
• HPNA Accredited Education Learning Library: Online learning modules from the Hospice and Palliative Nurses Association
• EPEC: Education in Palliative and End-of-Life-Care: Curricula for health care professionals to augment their knowledge and practice of primary palliative care
• Online Clinical Training Courses For All Clinicians: Training for physicians, nurses, social workers, case managers, and licensed professional counselors from CAPC member organizations
• Health Information Resources from NIH: Comprehensive end-of-life and palliative care downloadable resources, brochures, fact sheets, and reports for healthcare providers and consumers
• Resources and Educational Material: Links to information to assist healthcare professionals caring for palliative care patients throughout their disease processes

Learn how you can engage your patients in goals-of-care and advance care planning discussions with video-based patient decision aids that are easy-to-understand, values-neutral, and evidence-based by contacting ACP Decisions today!

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