8. Improving Health Care and Palliative Care for Advanced and Serious Illness (Paperback) | Released: 23 Mar 2013

Extensive evidence supports the effectiveness of clinical interventions for improving patient centered outcomes for patients with advanced and serious illness. For example, many types of medications and other interventions to treat pain, can lead to significant reductions in pain severity and pain-related outcomes such as quality of life. However, studies in different areas have found that these are often not well integrated into medical practice. For pain, despite widely accepted pain screening and clinical practice guidelines, pain continues to be undertreated, particularly for vulnerable populations such as nursing home patients. For communication and decisionmaking, in a study of audiotaped initial oncology consultations for patients with terminal cancer, fewer than half of oncologists offered alternatives to chemotherapy as an option. In addition, only 58% of patients were informed of their life expectancy and only 60% were aware of uncertainty about the benefits of chemotherapy. And despite wide availability and insurance coverage of hospice care, in 2009, only 42% of patients who died in the U.S. received any hospice care, and, of those, only half received more than three weeks of care. This report is part of a larger review of interventions aimed at reducing the quality gap. Given the critical importance of interventions to improve health care and palliative care in this population, we focused on these types of interventions in this report. These interventions can include changes in the way care is provided within a system, such as palliative care consultation services, and interventions to change how patients/families interact with the health care system, such as a patient self-management program for pain that is integrated with patients' health care. They can also include quality improvement interventions, which can be defined as any type of intervention to improve care with some element of system change, including change in how patients/families interact with the health care system, and can be delivered through a variety of quality improvement methods, such as continuous quality improvement. The common purpose of these types of interventions is to improve care and self-management to maximize the quality of life of people facing advanced and serious illnesses and the end of life and of their families. This includes relief from physical and psychosocial symptoms; psychosocial and spiritual support for both the patient and their families and other caregivers; excellent communication about topics such as prognosis; person-centered care, with compassion, personalization, and cultural sensitivity; care planning and prevention of crises; and opportunities for comfortable dying, life closure, and control of the circumstances of death. We address the needs of patients with advanced and serious illnesses through the three interrelated areas of palliative care, end-of-life care, and hospice care. Palliative care is defined as medical care focused on improving the quality of life of people facing serious or life-threatening illness, including the end of life. Emphasis is placed on pain and symptom management, communication, and coordinated care. End-of-life care is defined as care delivered to dying patients, and is a small subset of palliative care. Hospice is also a subset of palliative care and is defined as a care delivery system and insurance benefit for patients in the last months of life who have chosen quality of life as the primary goal of care, and which is provided, in the U.S., wherever the patient resides. In the U.S., these include the home, special inpatient units, and nursing homes. We focused on several specific targets that are critical to improving care in this population: continuity, coordination of care, and transitions; pain; distress; and communication and decisionmaking.