End-of-Life Care: Key Components Provided by Programs in Four States
Published: 2007-12-14T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: 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.
section_title: What GAO Found
paragraphs: 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.

section_title: Letter
paragraphs: In 1999, approximately 28 percent of all Medicare spending was used to  provide care for beneficiaries in the last year of their lives. A large  percentage of this spending was for institutional services such as hospital  inpatient or nursing home care; for example, slightly more than 58 percent  of this spending was for hospital inpatient services. In that same year,  approximately 1.5 million individuals over age 65 resided in nursing  homes. Sixty-two percent of these individuals had their nursing home care  paid for by Medicaid and about 16 percent had their care paid for by  Medicare. However, there are alternatives to institution-based end-of-life  care, such as home and community-based services. In 2005, the  Administrator of the Centers for Medicare & Medicaid Services (CMS), the  federal agency that administers Medicare and Medicaid, testified that  providing home and community-based services, such as personal care  services, can be a cost-effective way to provide end-of-life care while  increasing personal autonomy and allowing individuals to live in their  homes, surrounded by friends and family.
Advances in treating diseases have lengthened the life expectancy of  Americans, and chronic conditions such as heart failure, diabetes, or  kidney failure are no longer immediately fatal and can be treated or  managed with medication. As a result, more than 80 percent of Americans  lived past age 65 in 2000; however, many individuals live their last years of  life with chronic conditions. For example, according to the 2003 Medicare  Current Beneficiary Survey, 21 percent of beneficiaries have had a  diagnosis of diabetes, 5 percent have had a diagnosis of Alzheimer’s  disease, and 15 percent have had a diagnosis of pulmonary disease, such  as chronic obstructive pulmonary disease (COPD). In addition, 73 percent  of beneficiaries reported that they had two or more chronic conditions.  Medicare beneficiaries with chronic health conditions use many health  care resources. Ninety percent of Medicare beneficiaries over age 65 live  with a chronic condition in the year before death.
Medicare has a program that is specifically designed for end-of-life care,  the hospice benefit. The hospice benefit is designed to provide comfort  and pain relief and emotional and spiritual support to individuals with a  terminal illness, generally in a home setting. Medicare hospice services  include, for example, nursing care, counseling, and homemaker services,  as well as drugs and medical supplies. However, not all individuals nearing  the end of life may qualify for or elect to receive care under this benefit. To  be eligible for the benefit, a physician must certify an individual as having  a life expectancy of 6 months or less if his or her illness runs its normal  course. Physicians certifying patients for hospice are expected to use their  best clinical judgment regarding the normal course of the individual’s  illness. However, the course of many conditions, such as COPD, is often  uncertain, making it difficult for physicians to predict accurately the life  expectancy of individuals with these conditions and, therefore, refer them  to hospice. In addition, a beneficiary who elects hospice must waive  Medicare coverage for curative care related to the terminal illness for the  period the election is in effect. Some individuals are reluctant to forgo  curative care for their terminal illness and, therefore, do not elect hospice.
You are interested in health care services delivered to individuals who are  nearing the end of life and asked us to identify examples of programs,  other than hospice, that provide key components of end-of-life care. In this  report, we (1) identify key components of end-of-life care, (2) identify and  describe how certain programs incorporate key components of end-of-life  care, and (3) describe the challenges program providers have identified to  delivering the key components of end-of-life care.
To identify key components of end-of-life care, we interviewed officials  from CMS and 10 national independent and academic researchers in end- of-life and long-term care. In addition, we interviewed officials from the  National Hospice and Palliative Care Organization (NHPCO) and the  National Association for Home Care and Hospice (NAHC), industry  organizations that represent home care agencies, hospices, and palliative  care providers. Based on these interviews, we identified and relied  primarily on two extensive studies to identify the key components of end- of-life care: a 1997 Institute of Medicine (IOM) study and a 2004 study  published by the Agency for Healthcare Research and Quality (AHRQ).  The IOM study identified factors that promote high-quality care for  individuals near the end of life. The report was prepared by an IOM- appointed committee that included health care professionals and  researchers with expertise in geriatrics, end-of-life care, chronic illness  and disability, pain management, and long-term care. The committee  prepared this report with the objective of stimulating discussion,  encouraging consensus on how care for those approaching death can be  improved, and encouraging action to implement that consensus. The  AHRQ report is a study on the state of the science regarding end-of-life  care. It includes a comprehensive review of the literature that addresses  the effectiveness of specific health care interventions for improving  outcomes in individuals at the end of life. In preparing its report, AHRQ  reviewed a total of 5,165 abstracts applicable to the report’s key questions  that were published in the English language, appeared in journals from  1990 through 2004, involved human subjects, and did not include  individual case reports. The AHRQ report was peer reviewed by a  multidisciplinary technical expert panel that included leading scientists  and clinicians in nursing, gerontology, and palliative medicine and others  with a broad knowledge of relevant research and policy issues.
To identify the programs that deliver key components of end-of-life care  and describe how they incorporate these key components, we first  interviewed the officials from CMS, NHPCO, and NAHC and the 10  national independent and academic researchers in end-of-life and long- term care. We also used 2001 data from the U.S. Census Bureau to identify  states that had a high percentage of population age 65 and over. We  reviewed 2003 data from the National Center for Health Care Statistics and  2000 through 2003 data from The Dartmouth Atlas of Health Care to  identify states that had low health care service utilization as a proxy for  higher-than-average use of care management. In addition, we examined  fiscal year 2004 Medicaid data on states’ spending for certain home and  community-based services. We reviewed data on the utilization of  Medicare hospice services at the end of life from a study published in 2002  as a proxy for individuals who use noninstitutional services for end-of-life  care. Using information from our interviews and these data, we identified  14 states that meet at least one of the following criteria: a high proportion  of individuals over age 65, low health care service utilization, a high  proportion of Medicaid spending for home and community-based services  relative to spending for institutional services, or a high proportion of  individuals who use hospice services at the end of life. From the 14 states  we identified, we selected 4 states, Arizona, Florida, Oregon, and  Wisconsin, that are geographically diverse and have at least one state or  local program that provides care to individuals nearing the end of life. We  identified programs in these states that provide care to individuals nearing  the end of life and interviewed representatives of providers of these  programs: the Program of All-Inclusive Care for the Elderly (PACE), the  Wisconsin Partnership Program (WPP), the Medicaid Arizona Long Term  Care System (ALTCS), and palliative care programs. To describe how  these programs incorporate key components of end-of-life care, we  conducted site visits to interview representatives of PACE providers in  Florida, Oregon, and Wisconsin; representatives of three providers of  WPP; state officials from the ALTCS program; and representatives of at  least 2 palliative care programs in each of the four states for a total of 12  palliative care programs.
To describe the challenges these programs encounter in providing the key  components of end-of-life care, we conducted site visits to interview  representatives of PACE providers in Florida, Oregon, and Wisconsin;  representatives of three providers of WPP; state officials from the ALTCS  program; and representatives of at least 2 palliative care programs in each  of the four states for a total of 12 palliative care programs. We performed  our work from June 2005 through August 2007 in accordance with  generally accepted government auditing standards.
subsections: section_title: Background
paragraphs: PACE integrates Medicare and Medicaid financing to provide  comprehensive delivery of those programs’ services to individuals age 55  and older who have been certified as eligible for nursing home care by a  state under Medicaid. PACE providers are, or are a separate part of,  government entities or are not-for-profit private or public entities that  provide PACE services to eligible individuals. PACE services include, but  are not limited to, all Medicare services and all Medicaid services as  specified in the state plan. Adult day care, medical treatment, home  health and personal care, prescription drugs, social services, restorative  therapies, respite care, and hospital and nursing home care when  necessary are all required services under PACE. For most individuals, the  comprehensive services offered by PACE allow them to live in their  homes. CMS requires that each PACE provider operate an adult day center  for its beneficiaries.
WPP is a state-sponsored program that integrates Medicare and Medicaid  financing to provide comprehensive delivery of those programs’ services  to individuals age 55 and older and individuals age 18 and older with  physical disabilities who have been certified by Wisconsin as eligible for  nursing home care. To deliver WPP services, the state contracts with  organizations to provide eligible individuals with primary, acute, and long- term care services; prescription drugs; rehabilitation services and physical  therapy; adult day care; nursing home care; durable medical equipment  and supplies; and other services such as meal delivery and transportation  to medical appointments. The comprehensive services provided by WPP  are intended to allow individuals to live in the setting of their choice.
While similar to PACE, WPP does not require that providers operate an  adult day center.
ALTCS, the long-term care division of the Arizona Medicaid program,  serves individuals who are age 65 and over, blind, or disabled and who  need ongoing services at a nursing home level of care. Arizona provides all  its Medicaid services through a Medicaid waiver, which allows some  flexibility in the design and administration of the program. In Arizona,  ALTCS contracts with providers to deliver acute medical care services,  institutional care, hospice, behavioral health services, home health,  homemaker services, personal care, respite care, transportation, adult day  care, and home delivered meals. Many ALTCS participants are able to live  in their own homes or in assisted living facility and receive in-home  services.
Palliative care programs are operated by a variety of health care entities,  including hospitals, health care systems, and hospices. These programs  generally do not receive federal or state funding and may rely on private  grants or charitable support. Palliative care programs are designed to  improve the quality of a seriously ill individual’s life and support the  individual and his or her family during and after treatment. Services  provided by palliative care programs vary and may include pain and  symptom management, assistance with planning for additional services,  and psychosocial and spiritual support and can be provided in conjunction  with curative care.
section_title: Key Components of End-of-Life Care
paragraphs: 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. Care  management, also referred to as case management, interdisciplinary care,  or care coordination, is the coordination and facilitation of service  delivery and can be provided by a team or a single manager. Supportive  services include personal care services, home delivered meals,  transportation to medical appointments, and other services that assist  individuals who reside in noninstitutional settings. 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.  Communication among individuals, families, and program staff includes  discussions regarding end-of-life issues with individuals and their family  members and the use of various tools to foster communication among  program staff. Advance care planning is the process by which individuals  make decisions about their future care and may include the completion of  written documents, such as advance directives.
Specifically, IOM reported that for individuals nearing the end of life, care  systems should ensure that the following are provided: interdisciplinary  care management; home care or personal care services, which we refer to  as supportive services; pain and symptom management; supportive care  for caregivers and family through services such as respite care or  housekeeping services; and communication. The IOM report also  identified advance care planning as a key component of end-of-life care.  The IOM report recommended that people nearing the end of life should  receive supportive services managed by those involved in their care and  that health care organizations should facilitate advance care planning. In  addition, the IOM report recommended that health care professionals  improve care for individuals nearing the end of life by providing pain and  symptom management.
The AHRQ report focused on identifying outcomes that can indicate the  quality of the end-of-life experience and identifying the patient, family, and  health care system factors that are associated with better or worse  outcomes at the end of life. 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.
section_title: Programs Incorporate Key Components of End-of-Life Care
paragraphs: 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.  These programs also integrate pain and symptom management into their  services; provide family and caregiver support; foster communication  among the individuals, families, and program staff; and initiate or  encourage advance care planning.
subsections: section_title: Programs Use Care Management to Ensure Continuity of Care
paragraphs: Care management is used by all of the programs we identified to ensure  continuity of care for individuals nearing the end of life. Most of these  programs provide care management through interdisciplinary care teams.  The interdisciplinary care teams of PACE providers include a primary care  physician, nurse, social worker, physical therapist, occupational therapist,  recreational therapist or activity coordinator, dietitian, PACE adult day  center manager, health care aides, and transportation providers. PACE  beneficiaries attend a PACE adult day center where they receive services  from the interdisciplinary care team. The WPP providers use an  interdisciplinary care team approach similar to PACE, although the teams  are generally smaller. Representatives of two WPP providers we  interviewed stated that care management reduces hospitalizations.  Representatives of one of these providers stated that care management  ensures that individuals admitted to a hospital are discharged to an  appropriate setting to avoid unnecessary readmission. Representatives of  the second WPP provider stated that care management improves the  medical care of individuals by providing physicians with an accurate  picture of individuals’ health status and assisting individuals with  accessing physicians in a timely manner. Representatives of both PACE  and WPP providers stated that the interdisciplinary care teams meet to  exchange information, ensure that individuals’ needs are being met, and  address changes in the health status of individuals.
The four hospital-based palliative care programs we identified use  interdisciplinary care teams to coordinate services. These programs’ teams  include medical directors, social workers, chaplains, nurses,  psychologists, and case managers. Two of the hospice-based palliative  care programs developed partnerships with local hospitals and use  interdisciplinary care teams to assist individuals. Two other hospice-based  palliative care programs use interdisciplinary care teams of health care  professionals to coordinate medical, nursing, social work, and spiritual  services. Staff from one of these programs told us that because case  managers facilitate communication among different medical providers and  ensure that tests performed have a clear purpose, unnecessary or  duplicate tests are avoided. One hospice-based palliative care program’s  interdisciplinary care team consists of a nurse, social worker, and  palliative care physician who coordinate care and monitor the quality of  care provided. The two palliative care programs operated by health care  systems use interdisciplinary care teams composed of nurses, social  workers, chaplains, and pharmacists. The care team of one of these  palliative care programs makes treatment recommendations and enhances  coordination among medical staff. The other of these palliative care  programs provides social and psychological support and assists  individuals with transitioning between the hospital and their homes. One  hospice-based palliative care program uses a single case manager to assist  individuals with coordinating services.
In the ALTCS program, each Medicaid beneficiary is assigned a case  manager. The case manager aids the beneficiary in obtaining necessary  services, coordinates service delivery, and consults with other providers  as needed. ALTCS case managers refer beneficiaries to other social service  agencies when additional services are needed. ALTCS officials noted that a  unique feature of the program is that it provides institutional, supportive,  and all other medical and long-term care services under one agency and  under the supervision of a single case manager for each beneficiary. An  official also noted that the ALTCS program fosters continuity of care and  care coordination at the end of life through the case manager and the  integrated delivery of services from a single agency.
section_title: Programs Use Supportive Services
paragraphs: The programs we identified provide a variety of supportive services to  assist individuals near the end of life. The PACE providers we interviewed  are required to deliver supportive services such as personal care services,  adult day care, social work services, and meal delivery. Representatives of  one PACE provider stated that one strength of PACE is the integration of  all Medicare- and Medicaid-covered services, which includes the  supportive services, such as personal care services, covered by Medicaid.  Representatives of a PACE provider reported that when individuals  become too frail to come to the day center, a designated team visits  individuals in their homes to provide personal care, nursing, and physician  services. Representatives of this provider also described how they assist  individuals residing in residential care facilities and adult foster homes  who are nearing the end of life by providing additional staff support and  visits from the primary care physician.
The supportive services offered by WPP providers include social services,  personal care services, adult day care, environmental adaptations, meal  delivery, and transportation to medical appointments. Representatives of a  WPP provider stated that they also involve local community resources  such as religious institutions and friends to ensure that individuals receive  the assistance they need in their homes and communities. Representatives  of another WPP provider stated that the most common supportive services  they provide are home care, transportation, and day center activities.  Representatives of this provider noted that as individuals get closer to the  end of life, additional home care support can be provided.
Supportive services provided by the ALTCS program include home health  services, homemaker services, personal care, transportation, adult day  care, and home delivered meals. ALTCS officials stated that the type of  supportive services provided can vary significantly depending on a  beneficiary’s level of functioning and the level of support provided by the  family. A CMS official noted that two-thirds of ALTCS beneficiaries receive  supportive services in their homes or communities, which the official cited  as being above the national average.
The palliative care programs we identified either provide supportive  services directly to individuals nearing the end of life or assist individuals  with obtaining such services. One hospice-based palliative care program  provides individuals telephone calls and visits and assists individuals with  applying for other benefits. Another hospice-based palliative care program  provides supportive care that includes nursing and social work services  and spiritual counseling. A palliative care program that is operated by a  health care system provides individuals with 24-hour nursing support and  pastoral services. A palliative care program operated by a hospital helps  individuals establish supportive services, such as personal care services, at  the time of discharge from the hospital.
section_title: Programs Provide Pain and Symptom Management
paragraphs: All the programs we identified provide pain and symptom management or  assist with the coordination of such services. Representatives of the WPP  and PACE providers we interviewed incorporate pain and symptom  management into the care they provide. For example, representatives of a  provider of both PACE and WPP described how individuals they serve are  able to receive pain and symptom management services whenever they  feel such services are necessary. One PACE provider we interviewed  offers pain and symptom management to individuals nearing the end of  life, and a palliative care team visits individuals in the home when they are  unable to attend the PACE day center. Other providers of PACE and WPP  obtain assistance from local hospices to help provide pain and symptom  management services, such as overnight nursing, spiritual care, or pain  management. ALTCS provides pain and symptom management to  individuals when such services are needed. Representatives of the 12  palliative care providers we interviewed provide or assist with  coordinating pain and symptom management for individuals in either the  home or hospital setting.
section_title: Programs Offer Family and Caregiver Support
paragraphs: Programs we identified offer family and caregiver support through a  variety of services. PACE and WPP providers offer family and caregiver  support through personal care services, which can help alleviate demands  on a caregiver, and respite services provided in the home. 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. One WPP provider also operates a day center to provide  caregivers with respite. The ALTCS program provides support for  caregivers through personal care, respite, and adult day care services.
Most of the palliative care programs we identified also provide support to  family members and caregivers. They provide this support in a variety of  ways. Two hospice-based palliative care programs use social workers to  assist families and caregivers with end-of-life decision making and  accessing community agencies and resources. Another hospice-based  palliative care program uses an interdisciplinary care team to assist  families in making end-of-life decisions. One hospital-based palliative care  program, two hospice-based palliative care programs, and one palliative  care program operated by a health care system provide bereavement  support to family members. One health care system’s palliative care  program provides 24-hour nursing support for individuals in their homes,  which assists caregivers, and another palliative care program operated by  a hospice assists family members with coordinating in-home support  services. Two hospital-based palliative care programs assist families with  coordinating care upon an individual’s discharge from the hospital.  Officials from one hospice-based palliative care program and a palliative  care program operated by a hospital both stated that they provide  education about end-of-life care to family members.
section_title: Programs Foster Communication among the Individuals, Families, and Program Staff
paragraphs: The programs we identified communicate frequently with individuals and  their families regarding end-of-life issues. Representatives of the PACE,  WPP, and palliative care providers and ALTCS officials we interviewed  stated that they work with individuals and their families to develop a plan  of care that reflects each individual’s choices. 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. Representatives of a provider of both PACE and  WPP described how the interdisciplinary care team establishes goals with  the individual and includes a physician and social worker to facilitate  discussions involving end-of-life issues. A hospital-based palliative care  program’s interdisciplinary care team holds meetings with family members  to discuss an individual’s health status, prognosis, and end-of-life wishes,  and another palliative care program has discharge coordinators follow up  with individuals for as long as services are required. An ALTCS official  stated that case managers discuss with beneficiaries what their needs are  and what care they want to receive. Representatives of palliative care,  PACE, and WPP providers informed us that they develop close, trusting  relationships with individuals through their frequent communication to  facilitate discussions about end-of-life care.
Representatives of PACE, WPP, and palliative care providers we  interviewed stated that communicating with individuals and their families  about end-of-life issues earlier, rather than later, in the individual’s illness  makes it easier for both the individual and family to manage the decisions  they face when the individual is closer to death. Representatives of a WPP  provider stated that they have continuous conversations with individuals  and families about plans for the end of life, and representatives of a PACE  provider noted that they have these discussions early because such  discussions become more challenging when someone is very near the end  of life. Representatives of another WPP provider stated that they have  monthly conversations with individuals about which life-saving measures  they would like implemented as their condition worsens. A PACE  provider’s staff visits an individual nearing the end of life every other day  to ensure that the individual’s and family’s needs are being met.  Representatives of a palliative care provider described how they  repeatedly discuss with individuals near the end of life the availability of  other services such as hospice.
Programs we identified use a variety of tools to foster communication  among the members of the care team concerning individuals’ needs as  they near the end of life. Staff members of a provider of both PACE and  WPP use a checklist to identify changes in an individual’s condition. The  checklist is completed at an individual’s periodic review or whenever  there is a change in health status and helps inform the care team about the  need to discuss end-of-life planning with the individual. Representatives of  providers described the benefits of electronic medical records in  promoting communication among members of the care team.  Representatives of a PACE provider and a palliative care program stated  that creating an electronic medical record accessible to all members of the  care team facilitates communication among the team regarding the  condition of each beneficiary and increases the quality of care. A palliative  care provider distributed laptop computers and handheld wireless devices  to all clinical staff. Using these devices, clinical staff can both access and  input information when they visit an individual’s home, which keeps all  staff who interact with the individual informed. Another palliative care  provider shares clinicians’ notes and correspondence electronically, which  enhances communication.
Representatives of a hospice-based palliative care provider in Oregon  stated that the physicians they work with are more comfortable discussing  end-of-life issues with their patients since the 1997 enactment in Oregon of  the Death with Dignity Act, which focused attention in the state on end-of- life care and the options available to individuals. Representatives of a  palliative care program operated by a health care system we interviewed  stated that passage of this act helped create an environment in Oregon  where end-of-life issues are discussed more openly.
section_title: Programs Initiate and Encourage Advance Care Planning
paragraphs: 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.  Representatives of a provider of PACE and WPP stated that each  individual begins the advance care planning process as soon as he or she is  admitted to the program. This provider’s staff members work with  individuals to identify health care proxies and persuade individuals to  communicate their decisions to family members. Representatives of a  WPP provider stated that the staff have monthly conversations with  individuals about their end-of-life choices, such as do-not-resuscitate  orders. Representatives of another WPP provider stated that the care team  encourages individuals and their families to plan for the end of life, and  representatives of a provider of both PACE and WPP discuss with  individuals all the medical services and interventions they wish to receive.
Officials of palliative care programs stated that they offer assistance to  individuals enrolled in their programs in completing advance directives  and informing their families of any decisions they have made about their  end-of-life care. One palliative care program operated by a hospice assists  individuals with completing advance directives and informing family  members of their decisions for the end of life. Palliative care programs  operated by hospitals assist individuals with advance care planning tasks  such as completing advance directives and making medical decisions.
Representatives of a PACE provider in Oregon stated that they use  Physician Orders for Life-Sustaining Treatment (POLST) forms to assist all  individuals in their program with advance care planning. The POLST form  is a physician’s order that communicates which medical interventions  should be performed in the event of a health emergency. Similar to other  advance directives, the POLST form allows individuals to document their  choices regarding the use of life-sustaining procedures; a representative in  Oregon stated that, unlike other advance directives, POLST forms are  physician orders, which are more effective at communicating an  individual’s preferences to providers, particularly when the individual is  transferred across health care settings. A representative of an Oregon  PACE provider stated that the POLST form makes an individual’s wishes  clear and, because it is in the form of a physician’s order, legally protects  medical personnel, including emergency medical technicians, when they  carry out an individual’s documented choices during an emergency.
section_title: Providers Find Challenges to Delivering Certain Key Components of End-of-Life Care
paragraphs: Representatives of providers we interviewed described challenges they  encounter to delivering some of the key components of end-of-life care.  They described difficulties delivering supportive services and family and  caregiver support to rural residents because of travel distances, fewer  community-based service options, and an inability to hire adequate  numbers of staff in rural areas. 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.
subsections: section_title: Providers Encounter Challenges Delivering Supportive Services and Family and Caregiver Support to Rural Residents
paragraphs: 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.  Representatives of providers we interviewed stated that significant  distances between residents in rural areas make it difficult to provide  family and caregiver support, such as respite care, and supportive  services, such as personal care services. The length of time it takes for  personal care staff to travel between individuals in rural areas decreases  the number of services the providers can deliver in a day. In addition,  representatives of providers told us that increases in fuel costs have  affected how many services they can provide. Representatives of providers  we interviewed also described how unpaved roads and inclement weather  can increase travel time or prevent travel entirely when serving rural  residents. Representatives of one provider stated that the challenge of  providing transportation in rural areas is one of the barriers that has  prevented the provider’s expansion into rural areas of the state.
Representatives of providers we interviewed also cited the limited  availability of certain services in rural areas as a challenge to serving  individuals nearing the end of life who reside in those areas.  Representatives of providers described difficulties in delivering supplies  and medications to rural residents. For example, representatives of a  hospice-based palliative care provider noted that the pharmacy service it  contracts with to provide home delivery of medications cannot provide  daily delivery in very rural areas and inclement weather may further delay  deliveries. To address the problem, this provider has contracted with local  rural pharmacies to provide emergency medication; however, in a two- county area, only one pharmacy is open 24 hours a day, making it difficult  for individuals to access medications in an emergency. Representatives of  another hospice-based palliative care provider and a WPP provider stated  that they are sometimes unable to coordinate supportive services, such as  meal delivery and personal care services, for individuals in rural areas  because they are unable to locate providers of these services in these  regions. In addition, representatives of providers noted that a lack of  transit services makes it difficult to provide individuals living in rural areas  with transportation to medical appointments or day centers.
Representatives of providers stated that an insufficient number of nursing  staff and personal care workers in rural areas makes it difficult to provide  end-of-life care to those residents. For example, representatives of a  provider of both PACE and WPP noted that it is often difficult to hire staff  to work in more remote geographic areas, and they cited this as a barrier  to expanding the provider’s services into additional rural areas of the  state. In addition, representatives of one hospice-based palliative care  provider that serves a remote rural area stated that they have been unable  to maintain adequate numbers of health care workers to provide services  to its patients because such workers are increasingly choosing to relocate  to urban areas. Representatives of another hospice-based palliative care  provider in a rural region also stated that they have difficulty finding  qualified staff to fill these positions.
State officials we interviewed said that PACE is not a feasible option in  rural areas because of the requirement that the providers operate an adult  day center. Representatives of a provider that was formerly a PACE  provider stated that it was difficult to remain financially solvent as a PACE  provider in a rural community because there were not enough eligible  individuals to support an adult day center model. This provider ended its  participation in PACE because the community it served did not have  enough eligible individuals to justify the expense of a day center. Also, in  rural areas, the distance to the PACE adult day center from the residences  of individuals enrolled in the program can be a challenge for the PACE  program’s transportation services.
section_title: Providers Encounter Physician Training and Practices as Challenges to Providing Pain and Symptom Management and Advance Care Planning
paragraphs: Representatives of providers we interviewed described how they believe  physician training and practices may present challenges to providing pain  and symptom management and advance care planning to individuals  nearing the end of life. Representatives of providers stated that physicians  often do not receive adequate training in pain and symptom management.  A physician we interviewed who is the director of a hospital-based  palliative care program stated that he believes because physicians lack  training to recognize the need for pain and symptom management,  individuals nearing the end of life often have difficulty accessing such  services. Representatives of other palliative care providers we  interviewed agreed that lack of physician training in pain and symptom  management is a challenge to the provision of pain and symptom  management. Representatives of a hospital-based palliative care provider  believe that many medical schools do not provide sufficient training for  physicians in pain and symptom management. Representatives of a  palliative care provider operated by a health care system stated that they  believe most physicians are not trained to provide pain and symptom  management to individuals nearing the end of life. A recent article in the  New England Journal of Medicine (NEJM) has also noted that physicians  receive little or no training in the use of medications for pain and symptom  management.
Representatives of providers we interviewed also cited physician practices  as challenges to individuals receiving pain and symptom management  services as they near the end of life. A representative of a hospital-based  palliative care provider stated that some physicians are reluctant to refer  individuals to the program so that they can receive pain and symptom  management because these physicians do not understand or recognize the  need for such care. Representatives of providers we interviewed also  described how, in their experience, physicians may fail to address pain in  a timely manner. A representative of a hospital-based palliative care  provider stated that patients’ severe pain may go untreated while  physicians, intent on finding the cause of the pain, order extensive  diagnostic testing. Representatives of a palliative care program operated  by a health care system stated that some physicians perform aggressive  medical procedures on individuals nearing the end of life. These  representatives stated that they believe some physicians view providing  pain and symptom management as “giving up” on a patient.
Representatives of providers we interviewed described how physicians  often do not engage in advance care planning with individuals nearing the  end of life. For example, representatives of a hospice-based palliative care  provider stated that they believe physicians do not spend enough time  talking with individuals about end-of-life care options such as hospice. As  was recently reported in NEJM, physicians receive little training in the  compassionate discussion of end-of-life issues. Furthermore, ALTCS  officials stated that, in their experience, physicians often do not inform  individuals about advance directives. Representatives of a hospice-based  palliative care provider stated that physicians sometimes provide  individuals with incorrect information about care options for the end of  life. Representatives of a PACE provider told us that some physicians  resist ending curative care to allow individuals nearing the end of life to  receive only supportive care services, and the article published in NEJM  reported that some physicians regard the death of patient as a professional  failure.
section_title: Agency Comments and Our Evaluation
paragraphs: 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. CMS also stated that it was useful that  our report included individuals living with serious chronic conditions who  might live for some years. However, CMS suggested that we avoid using  the term terminal illness when referring to such individuals. We note that,  in our draft report, we used this term only in the context of discussing the  Medicare hospice benefit, which is, by definition, a benefit for individuals  with terminal conditions. CMS also stated that we should mention other  important components of end-of-life care including, for example, having  the appropriate medical diagnosis and having all possible opportunities for  a meaningful life. However, these issues are beyond the scope of our  report. CMS also provided technical comments, which we incorporated  where appropriate. CMS’s comments are reprinted in appendix I.
As agreed with your office, unless you publicly announce the contents of  this report earlier, we plan no further distribution of it until 30 days from  its date. At that time, we will send copies of this report to the  Administrator of CMS and to other interested parties. We will also make  copies available to others upon request. In addition, this report will be  available at no charge on the GAO Web site at http://www.gao.gov.
If you or your staff have any questions about this report, please contact me  at (202) 512-7114 or kingk@gao.gov. Contact points for our Offices of  Congressional Relations and Public Affairs may be found on the last page  of this report. GAO staff who made major contributions to this report are  listed in appendix II.
section_title: Appendix I: Comments from the Centers for Medicare & Medicaid Services
section_title: Appendix II: GAO Contact and Staff Acknowledgments
subsections: section_title: GAO Contact
section_title: Acknowledgments
paragraphs: In addition to the contact named above, key contributors to this report  were Nancy A. Edwards, Assistant Director; Beth Cameron Feldpush;  Krister Friday; John Larsen; and Andrea E. Richardson.