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By J. Russell Kieffer
Palliative care is a specialized form of whole-person medical care focused on improving the quality of life for patients with serious or life-limiting illnesses. It aims to relieve symptoms such as pain, shortness of breath, fatigue, and nausea, while addressing the physical, emotional, social, and spiritual needs of patients. Delivered by a team of health care professionals, palliative care provides an extra layer of support in conjunction with a patient’s other treatments. It is suitable for patients of any age and at any stage of illness, and can be given alongside treatments intended to cure or manage the illness. The ultimate goal is to enhance comfort and quality of life for both patients and their families.
In contrast, hospice care is a type of palliative care designed for patients in the final stages of a terminal illness, typically with a prognosis of six months or less. Hospice care focuses on comfort rather than curative treatments, ensuring patients live their remaining time as fully and comfortably as possible, often in their own homes. It also offers extensive support to families during the end-of-life phase and through bereavement.
How did Community-Based Palliative Care Start?
Community-based palliative care (CBPC), which provides services in patients’ homes or community settings rather than hospitals, has developed over several decades. The modern hospice movement, started by Dame Cicely Saunders in the 1960s in the United Kingdom, laid the groundwork. The concept gained momentum in the United States in the 1970s with the establishment of the first hospice, Connecticut Hospice, in 1974. By the 1990s and early 2000s, structured models of CBPC began to emerge, driven by the need to provide care closer to patients’ homes.
Within Providence, the development of CBPC was a natural outgrowth of our established hospital-based palliative care programs. As patients and families began to express a desire to receive specialized care in the setting of their choice, it became clear that expanding palliative care services into the community would better meet their needs and preferences. In 2013, a substantial three-year grant opportunity was identified, allowing Providence to expand services into the community setting. This grant provided the necessary resources to develop and implement comprehensive palliative care outside the walls of the hospital, ensuring that patients could receive high-quality, compassionate care wherever they call home.
Today, community-based palliative care is recognized as a critical component of comprehensive palliative care services, providing support to patients and their families in their homes, improving access to palliative care, and often helping to reduce hospitalizations and health care costs.
What Gaps in Health Care Does Palliative Care Fill, Particularly for Older Adults?
Palliative care addresses several gaps in health care, including:
- Specialized Symptom Management: Effective relief from pain, nausea, fatigue, and other symptoms.
- Whole Person Care: Addressing physical, emotional, social, and spiritual needs.
- Quality of Life: Enhancing comfort and dignity.
- Communication: Facilitating clear communication between patients, families, and health care providers.
- Decision Support: Helping patients and families make informed treatment decisions.
- Continuity of Care: Ensuring seamless care across different settings.
- Family Support: Providing emotional and practical support to families and caregivers.
- Advance Care Planning: Assisting with future health care preferences and directives.
- Cost Reduction: Reducing unnecessary hospitalizations and overall health care costs.
What is Palliative Care’s Impact?
Palliative care significantly impacts:
- Patients: Improved quality of life, personalized care, and emotional support.
- Family Members: Emotional and practical support, enhanced communication with health care providers, and bereavement counseling.
- Health Care Providers: Better coordination, improved decision-making, and reduced burnout.
- Broader Health Care System: Cost efficiency, resource optimization, and better patient outcomes.
What Makes Palliative Care Unique Versus Traditional Health Care?
Palliative care is distinct from typical health care in several ways. It focuses on enhancing quality of life for patients with serious illnesses by addressing physical, emotional, social, and spiritual needs, unlike typical health care, which often centers on treating the disease itself. Palliative care is delivered by an interdisciplinary team that collaborates to provide comprehensive support, involving both patients and their families in decision-making to ensure care aligns with their values, goals, and preferences. It can be provided at any stage of illness, alongside curative treatments, and emphasizes symptom management and comfort. Additionally, palliative care includes coordination of care across different providers and settings and offers significant support for caregivers, aiming to reduce stress and improve overall well-being for patients and their families.
How Widespread is Palliative Care Compared to Traditional Health Care Delivery?
Palliative care is increasingly recognized and integrated within traditional health care systems, but it is not as universally common. Awareness and demand are growing due to aging populations and chronic illnesses. Many hospitals now have palliative care teams, and outpatient services are expanding, although availability varies by region. High-income countries generally have more established services. Medical education is incorporating more palliative care training, but public misconceptions and policy inconsistencies remain challenges.
What are the Challenges in Increasing Access to Community-Based Palliative Care?
Several challenges include:
- Financial Sustainability: Funding community-based palliative care programs can be challenging. Reimbursement models often favor acute care over chronic and palliative care, making it difficult to secure consistent funding. There is also the challenge of covering the costs of services, especially for uninsured or underinsured patients.
- Regulations and Policies: Regulatory barriers and lack of supportive policies can impede the development and expansion of community-based palliative care. Inconsistent regulations across regions and difficulties in navigating health care laws can also be obstacles.
- Workforce Shortage: There is a shortage of health care professionals trained in palliative care. Recruiting and retaining skilled staff in community settings can be difficult, and there is a need for more training programs to prepare the workforce adequately.
- Public Awareness: Public misunderstanding about palliative care, such as its association only with end-of-life care, can limit its acceptance and demand. Educating both the public and health care providers about the benefits of early and community-based palliative care is crucial.
- Coordination of Care: Providing palliative care in the community requires effective coordination among various health care providers, which can be challenging. Ensuring seamless communication and continuity of care between hospitals, primary care, and palliative care teams is essential but can be difficult to achieve.
- Access and Equity: There can be disparities in access to community-based palliative care, particularly in rural or underserved areas. Ensuring equitable access for all patients, regardless of their geographic location or socioeconomic status, is a significant challenge.
Addressing these challenges requires comprehensive strategies involving policy changes, innovative funding models, education and training programs, and efforts to increase public awareness about the value of palliative care. With the growth of community-based palliative care programs, such as Iyashi Care, more patients and their loved ones are able to benefit and improve their quality of life.
About the Author
J. Russell Kieffer, MSW, LCSW, APHSW-C, is the Senior Executive Director for Palliative Care at Providence in California, Oregon, and Washington. He has over 20 years of experience in hospice and palliative care direct practice, program development, and leadership.
For additional information about Iyashi Care or to enroll, please contact 213.873.5791 or [email protected].