Sec. 2. Findings
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Congress finds the following: Studies demonstrate that, despite very high health expenditures, seriously ill patients are not satisfied with the quality of their medical care, characterized by untreated symptoms, unmet psychosocial and personal care needs, high caregiver burden, and low patient and family satisfaction. Health care delivery systems in the United States are not set up to address the complex chronic care needs that are increasingly becoming the norm for more patients and survivors (and family caregivers of such patients and survivors) facing serious illness like cancer; heart, renal and liver failure; lung disease;
Alzheimer’s disease and related dementias, which are care needs that can span over many years or even decades and impose significant burdens on family caregivers. Public outreach and education for seriously ill patients, survivors, and their families to improve awareness of and demand for the benefits of integrating symptom management alongside disease-directed treatment is essential to improving the quality of life of patients, survivors, and their families, which should be an integral element of quality health care.
Palliative care is specialized medical care for seriously ill patients. This type of care is focused on providing patients with relief from the symptoms, pain, and stresses of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
Medical teams that help patients manage pain and stress during, alongside, and after treatment provide patients with better quality of life. Evidence-based research shows that such care may also lead to increased survival. These teams also reduce preventable suffering and caregiver breakdown. Patients receiving palliative or coordinated care feel better and are more likely to keep their doctor’s appointments, complete their treatment, and take their medications. If patient disease-related and treatment-related symptoms such as pain, nausea, depression, fatigue, and breathlessness are managed, patients are more likely to eat well, exercise, socialize, and take pleasure in things that can help them feel better emotionally and physically and help them fight chronic illness.
A 2010 Harris Interactive poll commissioned by the American Cancer Society Cancer Action Network (ACSCAN) among cancer patients, survivors, and their family caregivers found that fewer than one-third of the patients and survivors were asked by their doctor about what is important to such patients and survivors in terms of quality of life. In that same poll, fewer than one-third of the patients and survivors were asked if they were having stress, depression, anxiety, or other emotional concerns related to the cancer or discussed ways to help with those emotional effects, though more than one-third of such patients and survivors said they had these emotional concerns.
A report commissioned by the Health Resources Service Administration
(HRSA)in 2002 projected significant shortfalls in the number of palliative medicine specialists in the United States and called for increased education and training in symptom assessment and management and other palliative care core competencies across all clinical specialties serving seriously ill patients. Several Institute of Medicine cancer reports, including on palliative care in 2001, survivorship in 2006, psychosocial care in 2007, and pain in 2011 have also consistently signaled the need for skills training to improve health professional communication with patients and families regarding symptoms, establishing goals of care, tailoring treatments to those goals, and other quality of life concerns.