Key Components of End-of-Life Care

The IOM and AHRQ studies identified the following key components in  providing care to individuals nearing the end of life: care management;  supportive services for individuals; pain and symptom management; family  and caregiver support; communication among the individuals, families,  and program staff; and assistance with advance care planning. Pain and symptom  management is pharmacological and nonpharmacological therapies, such  as massage therapy, to treat pain and other symptoms of an individual who  is seriously ill. Family and caregiver support are services that provide  assistance to those caring for an individual nearing the end of life in his or  her home and can include respite care and bereavement counseling. The IOM report also  identified advance care planning as a key component of end-of-life care. The AHRQ report identified continuity of  health care, such as that provided through care management; supportive  services, such as home care services; pain and symptom management;  support for families and caregivers; and effective communication among  program staff, which could include improved medical record  documentation, as core components of end-of-life care. Programs Incorporate Key Components of End-of-Life Care

The programs we identified in four states that incorporate key  components of end-of-life care described in the IOM and AHRQ reports are  PACE, WPP, ALTCS, and palliative care programs. These programs use  care management to ensure continuity of care and supportive services,  such as personal care services, to assist individuals nearing the end of life. In the ALTCS program, each Medicaid beneficiary is assigned a case  manager. Programs Use Supportive Services

The programs we identified provide a variety of supportive services to  assist individuals near the end of life. In addition, the  adult day centers operated by the PACE providers we visited offer respite  opportunities for the caregivers of the individuals who attend the day care  programs. For example, a  representative of a PACE provider described how the interdisciplinary  care team fosters communication with the individual about what type of  care he or she wants to receive at the end of life, including pain and  symptom management. Programs Initiate and Encourage Advance Care Planning

The WPP, PACE, and palliative care providers initiate or encourage  advance care planning to assist individuals with planning for the end of  life, making decisions about future medical care, and sharing information  with family members. Representatives of all the PACE providers stated  that they assist individuals with advance care planning tasks, such as  completing advance directives and identifying health care proxies, that is,  those who can make health care decisions on behalf of the individuals. Providers Find Challenges to Delivering Certain Key Components of End-of-Life Care

Representatives of providers we interviewed described challenges they  encounter to delivering some of the key components of end-of-life care. Representatives of providers also stated  that they believe physician training and practices can inhibit the provision  of pain and symptom management and advance care planning to  individuals nearing the end of life. Providers Encounter Challenges Delivering Supportive Services and Family and Caregiver Support to Rural Residents

Representatives of providers we interviewed described difficulties  delivering supportive services and family and caregiver support to rural  residents because of travel distances, lack of community-based services,  and insufficient numbers of nursing and personal care staff in rural areas. Furthermore, ALTCS  officials stated that, in their experience, physicians often do not inform  individuals about advance directives. Agency Comments and Our Evaluation

In commenting on a draft of this report, CMS stated that the report is a  useful description of a diverse set of provider types in very different  settings, each of which provides useful services to persons coming to the  end of life. CMS noted that the report is especially helpful as a time  approaches when more Americans will be living with serious and  eventually fatal chronic conditions.
Why GAO Did This Study

Approximately 28 percent of all Medicare spending in 1999 was used to provide care for beneficiaries in the last year of their lives. The Medicare hospice benefit is specifically designed for end-of-life care but is an elected benefit for individuals who have a terminal diagnosis with a prognosis of 6 months or less if the disease runs its normal course. GAO was asked to identify examples of programs that provide key components of end-of-life care. Specifically, GAO (1) identified key components of end-of-life care, (2) identified and described how certain programs incorporate key components of end-of-life care, and (3) described the challenges program providers have identified to delivering the key components of end-of-life care. To identify the key components of end-of-life care, GAO relied on studies by the Institute of Medicine (IOM) and the Agency for Healthcare Research and Quality (AHRQ). To identify and describe programs that implement these key components and describe the challenges providers of these programs face, GAO conducted site visits to four states, Arizona, Florida, Oregon, and Wisconsin, that, in addition to other criteria, demonstrated a high use of end-of-life services. We interviewed officials of federal, state, and private programs in these four states that provide care to individuals nearing the end of life.

What GAO Found

The IOM and AHRQ studies identified the following key components in providing care to individuals nearing the end of life: care management to coordinate and facilitate service delivery; supportive services, such as transportation, provided to individuals residing in noninstitutional settings; pain and symptom management; family and caregiver support such as respite care; communication among the individuals, families, and program staff; and assistance with advance care planning to aid individuals with making decisions about their future care. The programs GAO identified in the four states incorporate key components of end-of-life care when delivering services to individuals nearing the end of life. These programs use care management, either through a case manager or an interdisciplinary care team of health care professionals, to ensure continuity of care and the delivery of appropriate services. The programs also provide supportive services, such as personal care services or meal delivery, to assist individuals in their homes. Pain and symptom management is provided by these programs to treat pain and other symptoms of an individual who is seriously ill. These programs provide family and caregiver support through services that alleviate demands on the caregiver and by providing bereavement support for family members. The programs foster communication with individuals and family members to plan care that reflects each individual's choices. In addition, these programs use tools such as electronic medical records to facilitate communication among staff members. The programs GAO identified initiate and encourage advance care planning for the end of life and assist individuals with making decisions about future medical care, such as completing advance directives and identifying health care proxies, that is, those who can make health care decisions on behalf of the individual. Providers of the programs GAO identified described challenges they encounter to delivering some of the key components of end-of-life care. Providers described difficulties delivering supportive services and family and caregiver supports to rural residents because of travel distances, fewer community-based service options, and an inability to hire adequate numbers of staff in rural areas. Providers also stated that, in their experience, physician training and practices can inhibit the provision of pain and symptom management and advance care planning to individuals nearing the end of life. A recent article published in a medical journal GAO reviewed identified similar issues with physician training and practices. The Centers for Medicare & Medicaid Services (CMS), the agency that administers Medicare and Medicaid, commented that the report is a useful description of diverse provider types that deliver services to persons coming to the end of life. CMS noted that the report is especially helpful as a time approaches when more Americans will be living with serious and eventually fatal chronic conditions.