Sec. 2. Findings
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Congress makes the following findings: Palliative care is interdisciplinary, patient- and family-centered health care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness, whatever the diagnosis. The goal of palliative care is to relieve suffering and improve quality of life for both patients and their families. Palliative care is provided by a team of doctors, nurses, social workers, physician assistants, chaplains, and other specialists who work with a patient’s other health care providers to provide an extra layer of support, including assistance with difficult medical decisionmaking and coordination of care among specialists.
Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment. Palliative care is not dependent on a life-limiting prognosis and may actually help an individual recover from illness by relieving symptoms, such as pain, anxiety, or loss of appetite, while undergoing sometimes difficult medical treatments or procedures, such as surgery or chemotherapy. Hospice is palliative care for patients in their last year of life.
Considered the model for quality compassionate care for individuals facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. In most cases, care is provided in the patient’s home but may also be provided in freestanding hospice centers, hospitals, nursing homes, and other long-term care facilities. In 2014, an estimated 1,600,000 to 1,700,000 patients received services from hospice, including non-Medicare beneficiaries.
Nearly 48 percent of all Medicare decedents in 2014 received care from a hospice program. Hospice is a covered benefit under the Medicare program. There were 4,025 Medicare-certified hospices serving more than 1,300,000 Medicare beneficiaries in 2014. Despite a high intensity of medical treatment, many seriously ill patients experience troubling symptoms, unmet psychological and personal care needs, and high caregiver burden. Numerous studies have shown that adding palliative care can improve pain and symptom control, quality of life, and family satisfaction with care.
Health care providers need better education about pain management and palliative care. Students graduating from medical, nursing and other health professional schools today have very little, if any, training in the core precepts of pain and symptom management, advance care planning, communication skills, and care coordination for patients with serious or life-threatening illness. Even for specialists, training is lacking. For example, the Accreditation Council for Graduate Medical Education requires oncology fellowship programs to integrate competence in palliative care into their curriculum and the American Society of Clinical Oncology has recommended the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer.
Yet a 2015 national survey found that hematology/oncology fellows were inadequately prepared to provide palliative care to their patients. Less than half had a rotation in palliative care and 25 percent of fellows reported no explicit teaching on key skills such as assessing prognosis, conducting a family meeting to discuss treatment options, and referral to palliative care. The American Board of Medical Specialties and the Accreditation Council for Graduate Medical Education provided formal subspecialty status for hospice and palliative medicine in 2006, and the Centers for Medicare & Medicaid Services recognized hospice and palliative medicine as a medical subspecialty in October of 2008.
As of February 2017, there were a total of 127 hospice and palliative medicine training programs accredited by the Accreditation Council for Graduate Medical Education. For the 2016–2017 academic year, these programs were training 327 physicians in hospice and palliative medicine. Some programs include an additional track in pediatrics, geriatrics, research, or public health. Fewer than a dozen of these ACGME-accredited training programs focus solely on pediatric palliative medicine though data show an increasing prevalence of children with complex chronic conditions who could benefit from such specialized care.
There is a large gap between the number of healthcare professionals with palliative care training and the number required to meet the needs of the growing population of individuals with serious or life-threatening illness. In 2015, 75 percent of United States hospitals with 50 or more beds had a palliative care program though not all these programs have in place the interdisciplinary team necessary to provide comprehensive, high-quality palliative care. Hospital data reported to the National Palliative Care Registry show that in 2015 only 44 percent of programs met national staffing standards set by the Joint Commission, even when including unfunded positions.
Among the 56 percent of programs without complete interdisciplinary teams, 30 percent have no physician, 10 percent have no advanced practice registered nurse or RN, 54 percent have no social worker, and 70 percent have no chaplain. Looking at just physician specialists, 2017 projections by the George Washington University Health Workforce Institute show that current training capacity for hospice and palliative medicine is not sufficient to provide hospital-based care and keep pace with growth in the population of adults over 65 years old.
The shortages are exacerbated when considering the current rapid expansion of community-based palliative care, such as in outpatient and home-based settings. A separate survey of physicians in the field found that, if the rate of those entering and leaving hospice and palliative medicine maintains, there will be no more than 1 percent absolute growth in this physician workforce in 20 years, during which time the number of persons eligible for palliative care will grow by over 20 percent.
The study’s authors project this will result in a ratio of one palliative medicine physician for every 26,000 seriously ill patients by 2030. According to the National Academy of Medicine, there is a need for better understanding of the role of palliative care among both the public and professionals across the continuum of care so that hospice and palliative care can achieve their full potential for patients and their families .