Health care delivery for people nearing the end of life has changed significantly in the past two decades. Factors such as the increasing number of elderly Americans, structural barriers in access to care for certain populations, and a fragmented health care system present challenges to providing quality care near the end of life. There are, however, opportunities to improve this care, including a better understanding of ways to improve individuals’ participation in advance care planning and shared decision making, provisions of the Patient Protection and Affordable Care Act (ACA), and efforts to develop quality measures to enable accountability. In light of these developments, the Institute of Medicine was asked to produce a comprehensive report on the current state of care for people of all ages who may be approaching death. The report focuses specifically on the subset of people with “a serious illness or medical condition who may be approaching death.”
For most people, death results from one or more diseases that must be managed carefully over weeks, months, or even years. Ideally, health care harmonizes with social, psychological, and spiritual support as the end of life approaches. To achieve this goal, care near the end of life should be person-centered, family-oriented, and evidence-based. A palliative approach can offer patients near
1This summary does not include references. Citations for the discussion presented in the summary appear in the subsequent report chapters.
the end of life and their families the best chance of maintaining the highest possible quality of life for the longest possible time. Hospice is an important approach to addressing the palliative care needs of patients with limited life expectancy and their families. One of the greatest remaining challenges is the 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.
As much as people may want and expect to be in control of decisions about their own care throughout their lives, numerous factors can work against realizing that desire. Many people nearing the end of life are not physically or cognitively able to make their own care decisions. It is often difficult to recognize or identify when the end of life is approaching, making clinician-patient communication and advance care planning particularly important. Advance care planning conversations often do not take place because patients, family members, and clinicians each wait for the other to initiate them. Understanding that advance care planning can reduce confusion and guilt among family members forced to make decisions about care can be sufficient motivation for ill individuals to make their wishes clear. Yet even when these important conversations have occurred and family members are confident that they know what the dying person wishes, making those decisions is emotionally difficult, and families need assistance and support in this role.
The education of health professionals who provide care to people nearing the end of life has improved substantially in the past two decades, although serious problems remain. Knowledge gains have not necessarily been transferred to clinicians caring for people with advanced serious illness who are nearing the end of life. In addition, the number of hospice and palliative care specialists is small, which means the need for palliative care also must be met through primary care and through the other clinical specialties that entail care for significant numbers of people nearing the end of life.
A substantial body of evidence shows that improved care for people near the end of life is a goal within the nation’s reach. Improving the quality of care for people with advanced serious illness and focusing on their preferences may help stabilize both total health care and social costs over time. In the end-of-life arena, there are opportunities for savings by avoiding acute care services that patients and families do not want and that are unlikely to benefit them. The committee that produced this report believes these
savings would free up funding for relevant supporting services—for example, caregiver training, nutrition services, and home safety modifications—that would ensure a better quality of life for people near the end of life and protect and support their families.
More than one-quarter of all adults, including those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured these wishes in writing or through conversation. This is the case despite the results of recent polls showing that Americans worry about the potential high costs of care near the end of life and desire not to be a burden—financial or otherwise—on family members. As the baby boom generation ages, public interest in and acceptance of information on death and dying may increase. Key considerations in developing public education and engagement campaigns on this topic include sponsorship and engagement of key stakeholders, selection of target audiences, crafting and testing of messages, and evaluation of results.
The recommendations presented in this report are intended to address the needs of patients and families. They also should assist policy makers, clinicians in various disciplines along with their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates for better care, journalists, and members of the interested public in learning more about what constitutes good care for people nearing the end of life and the steps necessary to achieve such care for more patients and families. The committee offers five recommendations in the areas of care delivery, clinician-patient communication and advance care planning, professional education and development, policies and payment systems, and public education and engagement, which collectively offer a roadmap for progress in the nation’s approach to end-of-life care and management.
Health care delivery for people nearing the end of life has changed markedly since the Institute of Medicine (IOM) published Approaching Death: Improving Care at the End of Life (1997) and When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (2003). Among the challenges to providing health care to this population are the following factors:
- the increasing number of elderly Americans, including those with some combination of frailty, significant physical and cognitive disabilities, multiple chronic illnesses, and functional limitations;
- growing cultural diversity of the U.S. population, which makes it ever more important for clinicians to approach all patients as individuals, without assumptions about the care choices they might make;
- structural barriers in access to care that disadvantage certain population groups;
- a mismatch between the services patients and families need most and the services they can readily obtain;
- failure of the availability of palliative care services to keep pace with the growing demand;
- wasteful and costly systemic problems, including perverse financial incentives, a fragmented care delivery system, time pressures that limit communication, and a lack of service coordination across programs; and
- the resulting unsustainable growth in costs of the current health care delivery system over the past several decades.
These challenges are to some extent balanced by new opportunities for improving the delivery of health care near the end of life:
- an increased understanding of ways to improve participation in effective advance care planning and shared decision making among patients and families, including seriously ill children and adolescents, who may be able to participate in end-of-life decision making on their own behalf;
- various provisions of the Patient Protection and Affordable Care Act (ACA) and other system reforms that affect the organization and financing of health services;
- increasing use of communication and health information technologies, including electronic health records;
- growing recognition of and support for the role of caregivers; and
- efforts to develop quality measures to enable accountability.
To translate some of these opportunities into practice will require additional research; however, the greater challenge is to incorporate into practice the currently known evidence-based models of care.
STUDY CHARGE AND APPROACH
In view of these developments, the IOM was charged with conducting a consensus study to produce a comprehensive report on the current state of care for people of all ages who may be approaching death (see Box S-1). To conduct this study, the IOM assembled the 21-member Committee on Approaching Death: Addressing Key End-of-Life Issues, which com-
prised experts in clinical care, aging and geriatrics, hospice and palliative care, pediatrics, consumer advocacy, spirituality, ethics, communications, clinical decision making, health care financing, law, and public policy. The committee and the IOM recognize that many of the actions and systemic
The Institute of Medicine (IOM) will conduct a consensus study that will produce a comprehensive report on the current state of medical care for persons of all ages with a serious illness or medical condition who may be approaching death and who require coordinated care, appropriate personal communication (or communication with parents or guardians for children), and individual and family support. The committee will assess the delivery of medical care, social, and other supports to both the person approaching death and the family; person-family-provider communication of values, preferences, and beliefs; advance care planning; health care costs, financing, and reimbursement; and education of health professionals, patients, families, employers, and the public at large. The study will also explore approaches to advance the field. Specifically, the committee will:
- Review progress since the 1997 IOM report Approaching Death: Improving Care at the End of Life and the 2003 IOM report When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. The committee will assess major subsequent events and recommendations that have been implemented as well as those that were not implemented along with remaining challenges and opportunities.
- Evaluate strategies to integrate care of those with serious illness or medical condition who may be approaching death into a person- and family-centered, team-based framework. Demographic shifts, cultural changes, fiscal realities, and the needs of vulnerable populations will be considered as will advances in technology that affect the provision of care in different settings, most notably in the home. Families are a vital component of the health care team, and the financial and other ramifications for families and society will be considered.
- Develop recommendations for changes in policy, financing mechanisms and payment practices, workforce development, research and measurement, and clinical and supportive care. These recommendations will align care with individual values, preferences, and beliefs and promote high-quality, cost-effective care for persons with serious illness or medical condition who may be approaching death, as well as with their families.
- Develop a dissemination and communication strategy to promote public engagement understanding, and action. This strategy will need to consider the fears and anxieties surrounding care for patients who may be approaching death as well as functional dependency, aging and death, and cultural diversity in values, preferences and beliefs.
changes that would improve care for people nearing the end of life would also benefit many other patient groups, especially those with advanced serious illnesses, severe chronic conditions, and the functional limitations that come with frailty. However, the committee’s charge limited this study’s focus specifically to the subset of people with “a serious illness or medical condition who may be approaching death.”
This study was supported by a donor that wishes to remain anonymous and whose identity was unknown to the committee. The sponsor played no role in the selection of the committee’s co-chairs or members or in its work. To carry out its charge, the committee reviewed evidence that has accumulated since the two earlier IOM studies cited above were produced; conducted public meetings and additional events to gather testimony from interested individuals; held six meetings of its members; and, via an active Web portal, received comments from more than 500 additional individuals. In addition, papers were commissioned on the financing, utilization, and costs of adult and pediatric end-of-life care. (See Appendix A for further discussion of the data sources and methods for this study.)
STUDY FINDINGS AND RECOMMENDATIONS
The recommendations presented in this report are intended to address the needs of patients and their families. They should also assist policy makers, clinicians in various disciplines along with their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates for better care, journalists, and members of the interested public in learning more about what constitutes good care for people nearing the end of life and the steps necessary to achieve such care for more patients and families. The committee offers five recommendations in the areas of care delivery, clinician-patient communication and advance care planning, professional education and development, policies and payment systems, and public education and engagement, which collectively offer a roadmap for progress in the nation’s approach to end-of-life care and management.
The Delivery of Person-Centered, Family-Oriented End-of-Life Care
For most people, and except for those who die suddenly as a consequence of an accident or trauma, death results from one or more diseases that must be managed carefully over weeks, months, or even years, through many ups and downs. Ideally, health care harmonizes with social, psychological, and spiritual support as the end of life approaches. To achieve this goal, care near the end of life should be person-centered, family-oriented, and evidence-based.
A palliative2 approach can offer patients near the end of life and their families the best chance of maintaining the highest possible quality of life for the longest possible time. The committee defined palliative care for this report as care that provides relief from pain and other symptoms, that supports quality of life, and that is focused on patients with serious advanced illness and their families. Hospice is an important approach to addressing the palliative care needs of patients with limited life expectancy and their families. For people with a terminal illness or at high risk of dying in the near future, hospice is a comprehensive, socially supportive, pain-reducing, and comforting alternative to technologically elaborate, medically centered interventions. It therefore has many features in common with palliative care.
Palliative care can begin early in the course of treatment for any serious illness that requires excellent management of pain or other distressing symptoms, such as difficulty breathing or swallowing, and for patients of any age. It can be provided in conjunction with treatments for cancer, heart disease, or congenital disorders, for example. Palliative care is provided in settings throughout the continuum of care. Often it is provided through hospital-based consultation programs and outside the hospital through hospice programs in the home, nursing home, assisted living facility, or long-term acute care facility; palliative care outpatient clinics are also becoming increasingly prevalent. Besides physician specialists in hospice and palliative medicine, interdisciplinary palliative care teams include specialty advanced practice nurses and registered nurses, social workers, chaplains, pharmacists, rehabilitation therapists, direct care workers, and family members.
A number of specialty professional associations encourage clinicians to counsel patients about palliative care, but too few patients and families receive this help in a timely manner. Palliative care programs and other providers that care for patients nearing the end of life are not currently required to measure and report on the quality of the end-of-life care they provide, nor is there consensus on quality measures. These gaps are a barrier to accountability. Only hospice programs report on the quality of end-of-life care.
As yet, the evidence base is insufficient to enable establishment of a validated list of the core components of quality end-of-life care across all settings and providers. The committee proposes a list of at least 12 such components (see Table S-1). They include frequent assessment of a patient’s physical, emotional, social, and spiritual well-being; management of emo-
2Basic palliative care is provided by clinicians in primary care and various specialties that care for people with advanced serious illness, while specialty palliative care is provided by specialists in hospice and palliative medicine, nursing, social work, chaplaincy, and other palliative care fields.
tional distress; referral to expert-level hospice or palliative care if needed and desired; and regular revision of a care plan and access to services based on the changing needs of the patient and family.
The committee paid special attention to the growing demand for family caregiving. Family caregivers provide a wide range of essential and increasingly complex services for people with advanced serious illnesses and those nearing the end of life. Three in 10 U.S. adults are family caregivers (although this number represents all caregivers, not just those caring for someone near the end of life). This growing unpaid workforce generally is invisible; undertrained; and stressed physically, emotionally, and financially.
When the 1997 IOM report Approaching Death: Improving Care at the End of Life was published 17 years ago, hospice was well on its way to achieving mainstream status, and palliative care was in the early stages of development. Now, hospice is in the mainstream, and palliative care is well established in larger hospitals and in the professions of medicine, nursing, social work, and chaplaincy. Even so, one of the greatest remaining challenges is the 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 of all ages with serious advanced illness.
TABLE S-1 Proposed Core Components of Quality End-of-Life Care
|Frequent assessment of the patient’s physical, emotional, social, and spiritual well-being||Interventions and assistance must be based on accurately identified needs.|
|Management of emotional distress||All clinicians should be able to identify distress and direct its initial and basic management. This is part of the definition of palliative care, a basic component of hospice, and clearly of fundamental importance.|
|Offer referral to expert-level palliative care||People with palliative needs beyond those that can be provided by non-specialist-level clinicians deserve access to appropriate expert-level care.|
|Offer referral to hospice if the patient has a prognosis of 6 months or less||People who meet the hospice eligibility criteria deserve access to services designed to meet their end-of-life needs.|
|Management of care and direct contact with patient and family for complex situations by a specialist-level palliative care physician||Care of people with serious illness may require specialist-level palliative care physician management, and effective physician management requires direct examination, contact, and communication.|
|Round-the-clock access to coordinated care and services||Patients in advanced stages of serious illness often require assistance, such as with activities of daily living, medication management, wound care, physical comfort, and psychosocial needs. Round-the-clock access to a consistent point of contact that can coordinate care obviates the need to dial 911 and engage emergency medical services.|
|Management of pain and other symptoms||All clinicians should be able to identify and direct the initial and basic management of pain and other symptoms. This is part of the definition of palliative care, a basic component of hospice, and clearly of fundamental importance.|
|Counseling of patient and family||Even patients who are not emotionally distressed face problems in such areas as loss of functioning, prognosis, coping with diverse symptoms, finances, and family dynamics, and family members experience these problems as well, both directly and indirectly.|
|Family caregiver support||A focus on the family is part of the definition of palliative care; family members and caregivers both participate in the patient’s care and require assistance themselves.|
|Attention to the patient’s social context and social needs||Person-centered care requires awareness of patients’ perspectives on their social environment and of their needs for social support, including at the time of death. Companionship at the bedside at time of death may be an important part of the psychological, social, and spiritual aspects of end-of-life care for some individuals.|
|Attention to the patient’s spiritual and religious needs||The final phase of life often has a spiritual and religious component, and research shows that spiritual assistance is associated with quality of care.|
|Regular personalized revision of the care plan and access to services based on the changing needs of the patient and family||Care must be person-centered and fit current circumstances, which may mean that not all the above components will be important or desirable in all cases.|
NOTE: The proposed core components of quality end-of-life care listed in this table were developed by the committee. Most of the components relate to one of the domains in the Clinical Practice Guidelines for Quality Palliative Care set forth by the National Consensus Project for Quality Palliative Care.
Recommendation 1. Government health insurers and care delivery programs as well as private health insurers should cover the provision of comprehensive care for individuals with advanced serious illness who are nearing the end of life.
Comprehensive care should
- be seamless, high-quality, integrated, patient-centered, family-oriented, and consistently accessible around the clock;
- consider the evolving physical, emotional, social, and spiritual needs of individuals approaching the end of life, as well as those of their family and/or caregivers;
- be competently delivered by professionals with appropriate expertise and training;
- include coordinated, efficient, and interoperable information transfer across all providers and all settings; and
- be consistent with individuals’ values, goals, and informed preferences.
Health care delivery organizations should take the following steps to provide comprehensive care:
- All people with advanced serious illness should have access to skilled palliative care or, when appropriate, hospice care in all settings where they receive care (including health care facilities, the home, and the community).
- Palliative care should encompass access to an interdisciplinary palliative care team, including board-certified hospice and palliative medicine physicians, nurses, social workers, and chaplains, together with other health professionals as needed (including geriatricians). Depending on local resources, access to this team may be on site, via virtual consultation, or by transfer to a setting with these resources and this expertise.
- The full range of care that is delivered should be characterized by transparency and accountability through public reporting of aggregate quality and cost measures for all aspects of the health care system related to end-of-life care. The committee believes that informed individual choices should be honored, including the right to decline medical or social services.
Clinician-Patient Communication and Advance Care Planning
As much as people may want and expect to be in control of decisions about their own care throughout their lives, numerous factors can work against realizing that desire. Many people nearing the end of life are not physically or cognitively able to make their own care decisions. It is often difficult to recognize or identify when the end of life is approaching, making clinician-patient communication and advance care planning particularly important. Advance directives were developed to ensure that the decisions people make when fully able are followed when they can no longer speak for themselves. However, these checkbox-style documents have proven inflexible, inconsistent with subsequent events and decisions, and for various reasons both ineffective and unpopular. Electronic storage of advance directives, statements of wishes, health care proxies, or other relevant material—either in the patient’s electronic health record or in an external database—holds promise for addressing a few of the current problems (see also Recommendation 4).
The advance care planning process can start at any age and state of health and should involve family members and clinicians. The discussion centers on life values, goals, and treatment preferences; this knowledge, gained in periodic revisiting of perceptions over time, provides a guide for matching subsequent care decisions with the patient’s wishes and becomes increasingly specific as illness progresses. Advance directives (forms) can be useful when they are a component of these more comprehensive discussions, but they must be flexible and give health care agents and clinicians leeway to make decisions based on specific circumstances.
People who capture their care preferences in discussion or writing most commonly choose care that focuses on improving quality of life. However, the vast majority of people have not engaged in an end-of-life discussion with their health care provider or family and do not have an advance directive. People who are younger, poorer, less educated, and nonwhite are less likely to have such a document. Moreover, within all population groups, end-of-life preferences vary widely. Clinicians and even close family members cannot accurately guess or assume what an individual’s preferences will be; they must ask the patient—that is, have “the conversation”—and do so as often as necessary.
Advance care planning conversations often do not take place because patients, family members, and clinicians each wait for the other to initiate them. Understanding that advance care planning can reduce the burden of confusion and guilt among family members forced to make decisions about care can be sufficient motivation for ill individuals to make their wishes clear. Yet even when these important conversations have occurred and family members are confident that they know what the dying person
wishes, making those decisions is emotionally difficult, and families need assistance and support in this role.
The overall quality of communication between clinicians and patients with advanced illness is poor, particularly with respect to discussing prognosis, dealing with emotional and spiritual concerns, and finding the right balance between hoping for the best and preparing for the worst. Ample evidence documents structural and financial disincentives for having these discussions. In the absence of adequate documented advance care planning, the default decision is to treat a disease or condition, no matter how hopeless or painful. A result of inadequate advance care planning, therefore, can be more intensive treatment, as well as more negative impacts on family members.
Because most people who participate in effective advance care planning choose maximizing independence and quality of life over living longer, advance care planning can potentially save health care costs associated with unnecessary and unwanted interventions. The misrepresentation of the ACA provisions for advance care planning as “death panels” confused many Americans about the benefits and goals of advance care planning, which amount to ensuring that patients’ care preferences, insofar as possible, are honored. This caused the national dialogue to turn away from how best to facilitate earlier and more meaningful discussions about end-of-life preferences among individuals, families, and clinicians.
Recommendation 2. Professional societies and other organizations that establish quality standards should develop standards for clinician-patient communication and advance care planning that are measurable, actionable, and evidence-based. These standards should change as needed to reflect the evolving population and health system needs and be consistent with emerging evidence, methods, and technologies. Payers and health care delivery organizations should adopt these standards and their supporting processes, and integrate them into assessments, care plans, and the reporting of health care quality. Payers should tie such standards to reimbursement, and professional societies should adopt policies that facilitate tying the standards to reimbursement, licensing, and credentialing to encourage
- all individuals, including children with the capacity to do so, to have the opportunity to participate actively in their health care decision making throughout their lives and as they approach death, and receive medical and related social services consistent with their values, goals, and informed preferences;
- clinicians to initiate high-quality conversations about advance care planning, integrate the results of these conversations into the
- ongoing care plans of patients, and communicate with other clinicians as requested by the patient; and
- clinicians to continue to revisit advance care planning discussions with their patients because individuals’ preferences and circumstances may change over time.
Professional Education and Development
The education of health professionals who provide care to people nearing the end of life has improved substantially since the two previous IOM reports cited above were published, although serious problems remain. Hospice and palliative medicine has become an established medical specialty. Other areas of progress include preparation of more faculty members to teach palliative care, greater inclusion of some palliative care content throughout clinical education, development of the professional infrastructure of palliative care organizations and journals, and expansion of the evidence base.
On the other hand, two important deficiencies persist. First, the knowledge gains have not necessarily been transferred to clinicians caring for people with advanced serious illness and nearing the end of life. Second, the number of hospice and palliative care specialists is small, which means the need for palliative care also must be met through primary care and through the other clinical specialties that entail care for significant numbers of people nearing the end of life (for example, cardiology, oncology, pulmonology, and nephrology).
In the committee’s judgment, three deeply ingrained educational patterns obstruct further development of palliative care. First, hospice and palliative care are generally absent from the usual curricula of medical and nursing schools. One way to ensure attention to this topic in the undergraduate curriculum, in graduate training, and among future health professionals would be to add more such content to licensure and certification examinations.
A second negative pattern is the persistence of single-profession education silos. This is problematic because palliative care embraces an interdisciplinary, team-based approach.
A third pattern, most notable among physicians, is the lack of attention to developing clinicians’ ability to talk effectively to patients about dying and teaching them to take the time to truly listen to patients’ expression of their concerns, values, and goals. Studies have established that physicians can be taught the communication skills needed to provide good end-of-life care, but few medical educators teach these skills. Approaching Death (IOM, 1997) and When Children Die (IOM, 2003) specify the same four domains of clinical competency in palliative care: scientific and clinical
knowledge, interpersonal skills and knowledge, ethical and professional principles, and organizational skills. These domains are as relevant today as they were when those earlier reports were produced.
In addition to physician board certification in hospice and palliative medicine, the fields of nursing, social work, and chaplaincy all have established specialty certification programs in hospice and palliative care, although the number of certified individuals in each of these professions remains small relative to the need. Pharmacists also play important roles in palliative care, although the pharmacy field has no comparable certification program. From time to time, as needed, rehabilitation therapists specializing in occupational therapy, physical therapy, and speech-language pathology become additional members of the palliative care team. At the bedside, vital roles are played by direct care workers—a category that comprises nursing assistants, home health aides, and personal care aides. Finally, and in many ways most important, are family members. Even those who are not fully engaged as caregivers may have considerable day-to-day responsibility for patient management at home and coordination of care across services and among care providers.
Recommendation 3. Educational institutions, credentialing bodies, accrediting boards, state regulatory agencies, and health care delivery organizations should establish the appropriate training, certification, and/or licensure requirements to strengthen the palliative care knowledge and skills of all clinicians who care for individuals with advanced serious illness who are nearing the end of life.
- all clinicians across disciplines and specialties who care for people with advanced serious illness should be competent in basic palliative care, including communication skills, interprofessional collaboration, and symptom management;
- educational institutions and professional societies should provide training in palliative care domains throughout the professional’s career;
- accrediting organizations, such as the Accreditation Council for Graduate Medical Education, should require palliative care education and clinical experience in programs for all specialties responsible for managing advanced serious illness (including primary care clinicians);
- certifying bodies, such as the medical, nursing, and social work specialty boards, and health systems should require knowledge, skills, and competency in palliative care;
- state regulatory agencies should include education and training in palliative care in licensure requirements for physicians, nurses, chaplains, social workers, and others who provide health care to those nearing the end of life;
- entities that certify specialty-level health care providers should create pathways to certification that increase the number of health care professionals who pursue specialty-level palliative care training; and
- entities such as health care delivery organizations, academic medical centers, and teaching hospitals that sponsor specialty-level training positions should commit institutional resources to increasing the number of available training positions for specialty-level palliative care.
Policies and Payment Systems to Support High-Quality End-of-Life Care
A substantial body of evidence shows that greatly improved care for people nearing the end of life is a goal within the nation’s reach. At the same time, broad agreement exists across the political and ideological spectrum that the United States must take steps to stabilize expenditures on health care over time. In addressing care at the end of life, these goals can be reached in tandem: evidence indicates that improving the quality of care and the availability of services to meet patients’ and families’ most pressing needs does not have to entail increased expenditures.
Improving quality of care for people with advanced serious illness and focusing on their preferences may help stabilize total health care and social costs over time. In the end-of-life arena, there are opportunities for savings by avoiding acute care services that patients and families do not want and that are unlikely to benefit them. The committee believes these savings would free up funding for relevant supporting services—for example, caregiver training, nutrition services, and home safety modifications—that would ensure a better quality of life for people near the end of life and protect and support their families.
What requires closer examination and reform is how those resources are spent; the ways in which perverse financial incentives distort the current system and impede high-quality care; how geographic variations in expenditures can be reduced; and whether currently funded services are well matched to the values, goals, preferences, diverse cultural differences, expectations, and needs of patients and families, with ample evidence suggesting they are not.
U.S. national health care expenditures totaled $2.8 trillion in 2012, or about 17.2 percent of gross domestic product (GDP). Although the annual increase in health care spending has slowed in recent years, the size of the
sector and the possibility of continued future growth remain a significant concern to analysts across the political spectrum. Of particular concern is the likely growth in public spending on health care, a consequence in part of growing numbers of people eligible for Medicare as baby boomers age and for Medicaid as expansions under the ACA are implemented. These two programs are especially important in the end-of-life context because approximately 80 percent of U.S. deaths occur among people covered by Medicare, and Medicaid is the principal payer for long-term services needed by frail elderly individuals. The inefficiencies and payment incentives that have evolved in these two programs create opportunities for savings that, if recovered, could pay for a needed expansion in key supporting services and stabilize the costs of care for these patients.
A major reorientation and restructuring of Medicare, Medicaid, and other health care delivery programs is needed to craft a system of care designed to ensure quality and address the central needs of all people nearing the end of life and their families. Current financial incentives and a lack of more appropriate alternatives drive a reliance on the riskiest and most costly care settings. These incentives should be changed, and positive alternatives should be further developed.
In addition, many of the most urgent needs of these patients and their families are not medical per se and require the design and implementation of affordable support service programs that rigorously target the highest-risk patients and families, and tailor services to specific family needs as they evolve over time.
This approach, the essence of person-centeredness, is fundamental to achieving the efficiency goals of public financing programs: on the one hand, Medicare’s efforts to decrease utilization of unnecessary acute care and on the other, Medicaid’s attempts to prevent unnecessary use of nursing homes. These goals cannot be met without improving the supporting services that allow families to keep their loved ones safe and well cared for in the setting where the vast majority of seriously ill patients want to be—at home, which for some people may be an assisted living residence, nursing home, or skilled nursing facility.
The U.S. health care system is changing significantly. This fact underscores the need to establish additional accountability and transparency measures so that the effects of these changes—both intended and unintended—on people nearing the end of life can be assessed. Further changes in health care policy and legislation may be required to serve this group of Americans well.
Recommendation 4. Federal, state, and private insurance and health care delivery programs should integrate the financing of medical and
social services to support the provision of quality care consistent with the values, goals, and informed preferences of people with advanced serious illness nearing the end of life. To the extent that additional legislation is necessary to implement this recommendation, the administration should seek and Congress should enact such legislation. In addition, the federal government should require public reporting on quality measures, outcomes, and costs regarding care near the end of life (e.g., in the last year of life) for programs it funds or administers (e.g., Medicare, Medicaid, the U.S. Department of Veterans Affairs). The federal government should encourage all other payment and health care delivery systems to do the same.
Specifically, actions should
provide financial incentives for
- − medical and social support services that decrease the need for emergency room and acute care services,
- − coordination of care across settings and providers (from hospital to ambulatory settings as well as home and community), and
- − improved shared decision making and advance care planning that reduces the utilization of unnecessary medical services and those not consistent with a patient’s goals for care;
- require the use of interoperable electronic health records that incorporate advance care planning to improve communication of individuals’ wishes across time, settings, and providers, documenting (1) the designation of a surrogate/decision maker, (2) patient values and beliefs and goals for care, (3) the presence of an advance directive, and (4) the presence of medical orders for life-sustaining treatment for appropriate populations; and
- encourage states to develop and implement a Physician Orders for Life-Sustaining Treatment (POLST) paradigm program in accordance with nationally standardized core requirements.
Medical and social services provided should accord with a person’s values, goals, informed preferences, condition, circumstances, and needs, with the expectation that individual service needs and intensity will change over time. High-quality, comprehensive, person-centered, and family-oriented care will help reduce preventable crises that lead to repeated use of 911 calls, emergency department visits, and hospital admissions, and if implemented appropriately, should contribute to stabilizing aggregate societal expenditures for medical and related social services and potentially lowering them over time.
Public Education and Engagement
The IOM’s 1997 report Approaching Death (p. 270) concludes that “a continuing public discussion is essential to develop a better understanding of the modern experience of dying, the options available to patients and families, and the obligations of communities to those approaching death.” Likewise, the IOM’s 2003 report When Children Die calls for better communication about end-of-life issues in ways that encompass but are somewhat broader than the activities of advance care planning. In the years since these reports were published, the need for public education and engagement concerning end-of-life care has not abated, and it is manifest at several levels:
- at the societal level, to build support for constructive public policy related to the organization and financing of care near the end of life and for institutional and provider practices that ensure that this care is high-quality and sustainable;
- at the community and family levels, to raise public awareness of care options in the final phase of life, the needs of caregivers, and the hallmarks of high-quality care; and
- at the individual level, to motivate and facilitate advance care planning and meaningful conversations with family, caregivers, and clinicians about values, goals, and informed preferences for care.
More than one-quarter of all adults, including those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured these wishes in writing or through conversation. This is the case despite the results of recent polls showing Americans harbor several consistent worries about care near the end of life, centered around its potential high costs and the desire not to be a burden—financial or otherwise—on family members.
Expecting people to understand or have meaningful conversations about end-of-life care issues presumes a common vocabulary; however, surveys show people do not understand what palliative care is or what role it plays near the end of life, do not have a clear concept of “caregiver,” and may be confused by the various titles assigned by state laws to people who serve as health care agents (such as surrogate decision makers or proxies). Even some clinicians mistakenly confuse palliative care (care oriented toward quality of life for people with serious illnesses) with hospice (a model for delivering palliative care for people in their last months of life).
Events and activities since 1997 have improved the climate for discussions of death and dying, and the topic is not as taboo as it was a few decades ago. As the baby boom generation ages, public interest in and
acceptance of information on death and dying may increase. Key considerations in developing public education and engagement campaigns on this topic include sponsorship and engagement of key stakeholders, selection of target audiences, crafting and testing of messages, selection of the media mix, and evaluation. Meanwhile, stories about dying—“good deaths” and bad ones—appear regularly in the news media, in entertainment television programming and movies, in books, and in social media.
Conflicts of values related to end-of-life care can be expected in a heterogeneous nation such as the United States. People’s views on serious illness and the end of life, bereavement and loss, and the duties of caregivers are deeply held and vary widely among individuals. While people may differ in their opinions, it is important to disseminate accurate information and evidence so that those opinions are based, to the extent possible, on the facts as they are known and a candid assessment of their limits.
Recommendation 5. Civic leaders, public health and other governmental agencies, community-based organizations, faith-based organizations, consumer groups, health care delivery organizations, payers, employers, and professional societies should engage their constituents and provide fact-based information about care of people with advanced serious illness to encourage advance care planning and informed choice based on the needs and values of individuals.
Specifically, these organizations and groups should
- use appropriate media and other channels to reach their audiences, including underserved populations;
- provide evidence-based information about care options and informed decision making regarding treatment and care;
- encourage meaningful dialogue among individuals and their families and caregivers, clergy, and clinicians about values, care goals, and preferences related to advanced serious illness; and
- dispel misinformation that may impede informed decision making and public support for health system and policy reform regarding care near the end of life.
- health care delivery organizations should provide information and materials about care near the end of life as part of their practices to facilitate clinicians’ ongoing dialogue with patients, families, and caregivers;
- government agencies and payers should undertake, support, and share communication and behavioral research aimed at assessing public perceptions and actions with respect to end-of-life care, developing and testing effective messages and tailoring them to appropriate audience segments, and measuring progress and results; and
- health care professional societies should prepare educational materials and encourage their members to engage patients and their caregivers and families in advance care planning, including end-of-life discussions and decisions.
All of the above groups should work collaboratively, sharing successful strategies and promising practices across organizations.
The committee identified persistent major gaps in care near the end of life that require urgent attention from numerous stakeholder groups. Understanding and perceptions of death and dying vary considerably across the population and are influenced by culture, socioeconomic status, and education, as well as by misinformation and fear. Engaging people in defining their own values, goals, and preferences concerning care at the end of life and ensuring that their care team understands their wishes has proven remarkably elusive and challenging.
While the clinical fields of hospice and palliative care have become more established, the number of specialists in these fields is too small, and too few clinicians in primary and specialty fields that entail caring for individuals with advanced serious illness are proficient in basic palliative care. Often clinicians are reluctant to have honest and direct conversations with patients and families about end-of-life issues. Patients and families face additional difficulties presented by the health care system itself, which does not provide adequate financial or organizational support for the kinds of health care and social services that might truly make a difference to them.
In sum, the committee believes that a patient-centered, family-oriented approach to care near the end of life should be a high national priority and that compassionate, affordable, and effective care for these patients is an achievable goal.