Meet Marvin. Marvin is a 68-year-old retired welder who lives with his wife in their home by the ocean. He suffers from occupational emphysema, a breathing disorder, and lives most of his life in his air-conditioned living room in a recliner, watching TV. Marvin tries to avoid going outside, as the moist, warm air often exacerbates his respiratory symptoms. He develops severe shortness of breath with even mild exertion, including bathing and shaving. He is especially careful with physical activity for this reason, in addition to the fact that his skin is fragile and tears easily. He often feels depressed and has moments of panic when he can’t catch his breath. He is terrified of being admitted to a hospital where they might “put me on that breathing machine that I’ll never get off of.”
Dr. Starky, Marvin’s pulmonologist, suggests he consider being part of the palliative care program through his practice, but Marvin says he wants no part of a group of healthcare professionals who might find something else that’s wrong with him and send him to the hospital. Dr. Starky assures Marvin that is not at all the purpose of a palliative care program; in fact, the program can relieve his symptoms and might actually prevent hospitalization. Marvin and his wife agree to meet with the program coordinator to learn more.
Marvin’s story is like that of many people living with chronic, severe illnesses who experience stressful, life-limiting, often painful symptoms related to their medical conditions. Palliative care can be a harbor in the storm by offering relief from the stress and discomfort that has become part of their daily life.
What is Palliative Care?
Palliative care can begin at the time of diagnosis of a serious or life-threatening illness and be offered concurrently with treatment. This is different from the type of care offered through hospice services, which provides comfort care after curative treatment has been discontinued in preparation for the end of life. However, you will often observe the terms hospice and palliative care together, as both include comfort care, symptom relief, and support for individuals suffering from debilitating, life-threatening illness.
It is important to note that palliative care is not routinely offered through a palliative care service to those with chronic disease, incurable diseases, or who are incapacitated by their disease unless the individual has active, progressive, far-advanced disease. However, palliative care principles are appropriate in managing the symptoms of incapacitating disease and should be integrated into mainstream medicine.
Palliative care is also intended to be holistic, not just physical care, even though funding can restrict the provision of some services. It is delivered by an interdisciplinary team across all healthcare environments.
Defining Palliative Care
Palliative care in the U.S. is jointly understood by both the Centers for Medicare and Medicaid Services (CMS) and the National Quality Forum (NQF) to be person- and family-centered care that anticipates, prevents, and treats suffering to optimize quality of life. It is care offered through the continuum of illness that addresses physical, intellectual, emotional, social, and spiritual needs and facilitates individual autonomy, access to information, and choice. It is a philosophy and care delivery model, and there are certain characteristics that encompass palliative care.
The Palliative Care Team
Palliative care is meant to be delivered by an interdisciplinary team. CMS does not pay for palliative care other than a consultation by the physician or nurse practitioner, so most teams cannot afford to have all the disciplines.
There are clinical practice guidelines that exist to ensure excellent care. The National Consensus Project for Quality Palliative Care (NCP) has the mission of promoting quality palliative care in the U.S. through an emphasis on partnerships between and within hospitals, home health agencies, hospices, and community groups. This type of collaboration is meant to foster consistency, access and continuity, and the highest quality of care through the identification of 8 core domains of palliative care.
Who Receives Palliative Care?
Individuals of any age who receive a diagnosis of a serious or life-threatening illness are eligible for palliative care. The diagnoses that render such concern fall into a vast range of diagnostic categories that affect any body system, as well as cause significant psychosocial distress.
Assessment of Symptoms
To properly address each of the domains, a healthcare professional must assess the individual’s symptoms. Symptoms can be described as physical or mental phenomena or changes of condition, experienced by an individual, which are a clear departure from normal functioning or feeling and are triggered by a disorder. They are subjective and usually conveyed to others through language (Bruera & Dev, 2013).
While instruments to aide with symptom measurement have been developed, such tools can only be effective when you understand the goals of an assessment, as well as the applicability, practicality, and acceptability of the tools within a population and how symptoms might affect an individual’s quality of life.
The Domains of Palliative Care
The National Consensus Project (2013) explored clinical care standards, benchmarks, and expectations for quality and incorporated them into the content for the 8 domains of palliative care. They are applicable to all health settings and reflect current practice standards that are research-based. The purpose of these 8 domains is to provide a framework for optimal practice in palliative care. All of them rely on the principles of proper and ongoing assessment, collaboration and information sharing, informed decision-making, quality care planning, and proper care delivery.
Palliative care is person- and family-centered care that anticipates, prevents, and treats suffering to optimize quality of life. It is care offered through the continuum of illness that addresses physical, intellectual, emotional, social, and spiritual needs and facilitates individual autonomy, access to information, and choice. Individuals of any age who receive a diagnosis of a serious or life-threatening illness are eligible for palliative care, which will be delivered by the interdisciplinary palliative care team.
Relias Learning provides palliative care training that meets regulatory and compliance standards, while ensuring nurses, therapists, home health aides, and hospice volunteers are positioned to confidently provide specialized care and services.