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Supporting Public Health’s Role in Addressing Unmet Needs in Serious Illness and at the End of Life
Policy Date: 11/5/2013
Policy Number: 20134
Related APHA Policy Statements
APHA policy 2005-9 – Supporting Public Health’s Role in Addressing Unmet Needs at the End of Life 
This proposed policy addresses the public health problem of the growing suffering and illness burden among older adults and seriously ill individuals who are faced with advanced life-limiting conditions as they age. The policy calls for public health prevention and intervention strategies to improve population and gerontological health, as well as the health and well-being of diverse subgroups, through public health policy-making that fosters intersectoral collaboration, innovation, and development of models of palliative care that rebalance medical and social services and supports. Focusing on the patient and caregivers as the unit of care, palliative approaches to care target advance care planning, improved communication and care coordination, prevention and relief of pain and suffering, and multidimensional assessment and care responses at the individual and population levels. These approaches move beyond the traditional domains of medical practice and engage public health strategies. Recommendations for externally directed support include building the public health infrastructure through public health agency accreditation, developing a palliative care and gerontological workforce, increasing access to palliative care services, implementing public education programs and campaigns focusing on the right to palliative care and pain management, and funding research to support expansion of palliative care initiatives and interprofessional training.
The American Public Health Association has supported a major role for federal, state, and local government health agencies in ensuring that health care is maximally responsive to the public’s needs. Unmet needs that have been inadequately addressed by all sectors are the prevention and relief of pain and suffering, especially among individuals with multimorbidity, and many of the adverse consequences of living with advanced life-limiting and chronic terminal illness, which are often compounded by the failure to introduce palliative care interventions early in the course of the chronic illness trajectory to alleviate suffering. In a recent National Center for Health Statistics report, as well as other studies,[2,3] data trends over the past 10 years and research evidence document an increase in the prevalence of multiple chronic conditions among older adults. According to a 2011 Institute of Medicine report, Relieving Pain in America, approximately 100 million Americans are afflicted with pain that is often undertreated, especially among high-risk groups such as older adults, patients with cancer, racial and ethnic minorities, and people with cognitive and functional impairments and other disabilities.[4,5] This suffering and illness burden has unintended consequences for many members of society, including health and pain care disparities and social and economic costs.[6,7] In studies of emergency department use, results demonstrate a relationship between high utilization of emergency department services and underlying social determinants of health such as neighborhood, income, race, ethnicity, and education.[8,9] These findings raise serious concerns about barriers to effective care for individuals who are seriously and chronically ill, especially those who are likely to experience health disparities.
Suffering and illness are multidimensional public health problems that result in complex unmet medical and social needs spanning the continuum of care, from acute care through post-acute and long-term care. Fragmented care systems, care transitions, lack of care coordination, and inadequate planning often add to the suffering and illness burden. Individuals with cancer and other chronic illnesses such as advanced heart failure and late-stage dementia suffer physically, emotionally, and socially across all stages of illness and frequently do not have conversations with their health professionals about their care goals, values, and preferences.[10,11] Palliative care, a therapeutic model that defines the patient and family as the unit of care, optimizes the quality of life of seriously ill patients by focusing on their human needs as well as their medical needs. The palliative care model also aims to improve communication between patients and their health professionals and strengthen care coordination, promote health literacy through evidence-based practice tools such as patient decision aids, and increase participation in shared informed decision making.
Many types of palliative care, including nonhospice palliative care, are appropriate for patients who are seriously ill, even if they do not have a terminal diagnosis or may not be approaching the end of life. Contrary to a common misconception, palliative care can be provided at the same time as curative measures or treatment. A seminal research study showed that early integration of palliative care simultaneously with standard oncological care increased overall survival among cancer patients relative to those who received only standard oncological care.
There are many other types of interdisciplinary palliative care, including hospice palliative care, hospital-based palliative care, pediatric palliative care, palliative care for older adults, palliative care for veterans, palliative care in emergency departments, and palliative care in intensive care units (ICUs). Palliative approaches to care seek to manage care transitions more effectively through better care coordination, to manage distressing symptoms and reduce pain levels, and to prevent and relieve suffering among seriously ill patients. Gaps in existing palliative care systems and services have a detrimental impact on quality of life among patients as well as caregivers. For example, discharge planning for hospital-based palliative care patients needs to be strengthened and supported for the benefit of both patients and caregivers.
Hospice care, a form of palliative care for patients who may no longer be appropriate candidates for disease-modifying therapies or curative treatments because they have an advanced or terminal illness, is a comprehensive interdisciplinary care program that provides pain and symptom management as well as psychosocial, emotional, and spiritual support services to patients and their family members.[14,22] Hospice serves patients who are eligible for Medicare, have been certified by two physicians to be terminally ill, and have a life expectancy of 6 months or less if the illness were to run its normal course. The physician certification eligibility criterion is a requirement of the Medicare Hospice Benefit (MHB), the primary financing mechanism for hospice care. As a result of the MHB, access to hospice care is more restrictive than access to palliative care. Regular Medicare coverage (original Medicare fee-for-service coverage under Part A and/or Part B) is suspended for beneficiaries who elect to use the MHB and thereby agree to forgo curative or conventional medical treatment.[22,23] Providers are reimbursed only for services that are primarily palliative and have a palliative intent, except in the case of items and services covered by Medicare unrelated to the terminal illness. Nevertheless, as an exception to the general rule, some hospices have “open access” policies that permit certain curative or disease-modifying treatments at the same time as comfort care.
There has been rapid growth in hospice care over the past few decades; in 2010, 44% of Americans who died were receiving hospice care, and there was a 3% increase in the supply of hospice providers (along with a 53% increase over the preceding decade). While the average length of stay rose from 84 days in 2009 to 86 days in 2010 (primarily because of an increase in the average length of the longest stays), median and short lengths of stay remained fairly stable. The percentage of patients who died or were discharged within 7 days of admission rose from 35.3% to 35.7%. According to the National Hospice and Palliative Care Organization, approximately 44.6% of US deaths occurred in hospice programs in 2011. Study findings suggest that hospice enrollment results in substantial savings in government expenditures, particularly among short-stay nursing home residents. Studies also show that, among nursing home residents, those enrolled in hospice are less likely to be hospitalized than those not enrolled in hospice.
Families and caregivers of people with serious or chronic terminal illnesses often experience increased morbidity or premature mortality resulting from the stress and strains associated with a loved one’s terminal decline, as well as stress experienced serving in the role of surrogate decision maker and coping with the demands of the ethical relationship to the patient.[27,28] Health care and social service providers, public health professionals, and state and local public health departments, together with their collaborators (e.g., aging networks, state units on aging, and others), have a role in preventing and relieving this suffering4 and, thus, in ensuring maximum responsiveness to public needs. Promotion of the quality of life of seriously ill and dying individuals and their family members, caregivers, and survivors is integral to achievement of the Healthy People 2020 goals of increasing quality of life, promoting death with dignity, and fostering hope at the end of life through holistic care.
There is strong evidence that costs continue to escalate in caring for seriously ill patients at the end of life.[31–33] Multiple factors account for these cost trends, including regional variations in care and local practice patterns, high-intensity care at the end of life (evidenced in days spent in ICUs),[20,32] emergency department visits and rehospitalizations, aggressive cancer care,[18,32] communication failures, and social determinants of health.[8,9] Studies by the Dartmouth Atlas Project on Medicare beneficiaries with chronic illness near the end of life, as well as other studies, have shown that although there is variation by region and hospital in quality, outcomes, and costs, palliative care and hospice care are effective in reducing these costs.[15,20,34–36]
Increasingly, the public health needs of the chronically and seriously ill population and the needs of their caregivers call for a heightened emphasis on public health planning. The World Health Organization public health model for palliative care identifies the stages of policy development, such as drug policy-making, policy implementation, and education and training, that are critical to meeting public health needs. Important public health planning functions include workforce planning to ensure an adequate supply of primary care and generalist-level practitioners, geriatricians and gerontologists, pain specialists, social workers, and public health professionals, as well as planning for an affordable drug supply, facilities, and the diverse types of care that will support improved public health.[37,38] These types of care include both primary medical services and expanded social services and supports such as transportation, community capacity building, and asset mapping[38,39] (e.g., working collaboratively with religious leaders and churches, outreach to underserved and minority populations, and improved emergency preparedness and continuity in planning of operations).
Federal health reforms are also driving the rapid integration of primary care, mental health care, and palliative care. Innovative models of care delivery are evolving that include fully integrated systems that provide person-centered care through medical and health homes and embed palliative care in the community through intersectoral and interdisciplinary collaborations among physicians, nurse practitioners, social workers, and other health professionals.
The critical importance of public health practice and public health research to establishing priorities regarding hospice, palliative, and end-of-life care demands the urgent attention of public health professionals and advocates in the other health professions. Advancing public health research in palliative care will inform both practice and public policy decision making to meet the challenges of improved health and health care, efficiency, and public health ethics. These initiatives must be informed by a recognition that there are limits on resources. However, public health and other professionals need to continue to advocate for the right to palliative care for individuals who are chronically ill or at the end of life.
Proposed Recommendations Statement
With the aging of the population, the severity of the illness burden and the proportion of deaths associated with chronic terminal illnesses will increase, resulting in a growing need for a trained public health, generalist-level palliative care and gerontological workforce. This public health need has created important opportunities to develop effective interventions for compressing morbidity; improving advance health care planning, including the evidence-based Physician Orders for Life-Sustaining Treatment Paradigm (POLST)[43,44]; and expanding access to palliative and end-of-life care.[14,37,39]
As reported by the Institute of Medicine in its comprehensive report on pain, pain care, and pain management and its blueprint for a public health response to pain, improved pain care is a public health priority for seriously ill patients, frail elderly individuals, and other subgroups who are at higher risk for inadequate pain care assessment and treatment.
The Association of State and Territorial Chronic Disease Program Directors (CDD) and the Centers for Disease Control and Prevention (CDC) facilitated a systematic process that considered input and ideas from nationally prominent stakeholders with expertise in end-of-life issues, public health, aging, and cancer. This process resulted in priority recommendations aimed at assisting state health departments to identify the role of public health in addressing end-of-life issues. These recommendations are congruent with and complementary to existing APHA policies and priorities.[46–48] APHA continues to support the intent of the CDC and CDD to identify a chronic disease point person within state health departments to coordinate end-of-life activities with relevant issues in aging and serious illness; collect, analyze, and share data about end of life through state surveys; educate the public about the availability of hospice and palliative care and the importance of advance care planning; and eliminate financial barriers to third-party payments for early and comprehensive hospice and palliative care. These are priority recommendations that many states are moving toward implementing.
In addition to the restrictive eligibility criteria imposed by the Medicare Hospice Benefit, there is evidence that some hospice programs impose restrictions of their own to limit high-cost care. Hospice care has been shown to add to the costs incurred by long-stay nursing home residents with diagnoses other than cancer or dementia. In addition, there is some evidence of overuse of hospice care in nursing homes. The Office of the Inspector General of Health and Human Services is scrutinizing hospice lengths of stay in the nursing home industry, primarily among for-profit entities. While there is variation in the use of hospice care, regulators may not fully understand and take into account the complexity of nursing home populations, their illness and suffering burden, or their high prevalence of multimorbidity. Consideration also needs to be given to the ethical implications of resource allocations and their potential disproportionate impact on vulnerable subgroups of older adults, such as minority women who are living in resource-poor nursing homes and may be denied access to hospice care.
Recent studies show that significant resources are being spent for patients hospitalized with advanced illnesses and those at the end of life.[15,18,20,31–36] Although some may argue that this is evidence that weighs against hospice and palliative care services and runs counter to health reform cost-containment goals, such a view would not be correct. Studies have shown that palliative care services and consultations lead to significant cost savings in hospital systems.[15,35,36] These cost savings are achieved through earlier palliative care interventions, improved symptom management, and reductions in unnecessary emergency department visits, readmissions to hospitals, and days spent in the ICU for high-intensity care for medical conditions that can be properly treated at lower levels of care.
Diminished patient autonomy is frequently raised as a ground of opposition to palliative care on the false premise that the philosophy of palliative care is to limit care, and therefore this position is inherently in conflict with the right of the patient to decide about her or his own health care. Rather, the patient-centered philosophy of palliative care is to provide the best care possible for the patient, to relieve the patient’s pain and suffering while aligning care with the patient’s values and care preferences, and to improve the patient’s quality of life. One of the key components of a palliative care consultation is identifying and clarifying appropriate goals of care for the patient in light of her or his condition, values, and preferences. This consultation involves a meaningful discussion with the patient or proxy and requires skillful communication strategies and tools. Taking into account cultural, linguistic, racial/ethnic, health literacy, and other social and economic characteristics may help identify those who would benefit from earlier attention to their planning needs and a heightened focus on enabling their self-efficacy and agency in decision making.
Supporting caregivers, including family members and/or significant others, is integral to palliative care and encompasses diverse approaches to communication that may be employed by the palliative care team. As part of palliative care, caregivers are usually made a part of goals-of-care discussions with the patient’s consent. Shared decision making is a process of communication and mutual recognition in which health professionals engage with the patient and her or his caregivers and provide information to support and enhance the patient’s autonomy and understanding of the best available evidence about treatment options. Shared decision making has been shown to be effective in achieving the goals of improving communication and resolving conflict, and it is an appropriate course for patients and their caregivers who wish to explore options in light of the limitations of illness as well as the uncertainties presented by the illness trajectory.
There is a widespread recognition that there is a serious shortage of trained public health, generalist-level palliative care, and gerontological professionals who are equipped to meet the needs of the growing chronically ill and older adult populations in the United States.[52–54] This shortage is a public health crisis. Efforts have been initiated by various professional associations and foundations, such as the John A. Hartford Foundation, to develop competencies in nursing and social work as well as in palliative social work.
Requests and decisions to hasten death may be viewed by hastening death advocates as an alternative to palliative care. Hastening death and physician aid in dying are legally and ethically distinct from forgoing life-sustaining treatment. Hastening death policies and practices raise ethical issues for policymakers as well as for practitioners who provide care to seriously ill patients who are suffering. There is no clear consensus among bioethicists, palliative care physicians, and other palliative care professionals that hastening death practices and other types of practices (e.g., terminal sedation for patients who voluntarily refuse to eat) have been officially endorsed as standard practice in the United States. In light of the dearth of empirical evidence about hastening death; the personal, social, and cultural meanings of such decisions and practices; and their impact on diverse populations, the focus of APHA with respect to the chronically and seriously ill should be compressing morbidity, improving hospice and palliative care as public health responses to the illness burden and to pain and suffering, and eliminating health disparities.
APHA urges the following action steps to improve population and gerontological health and well-being:
• State and local health departments are encouraged to take an active public health role in addressing palliative and end-of-life issues and unmet needs among seriously ill individuals, including advocating for patient rights and honoring patients’ full participation in shared informed decision making, as well as developing public health agency accreditation processes that demonstrate competencies in these areas.
• State governments and state health departments are urged to promote effective pain care and pain management in the case of serious illnesses and at the end of life through the development of policies that remove barriers to use of essential pain medications including opioid analgesics, the establishment of clinical guidance for the appropriate medical use of opioid and non-opioid analgesics in diverse patient populations,[59–61] and evaluations of policy responses to alleviate intolerable and intractable forms of suffering, with appropriate safeguards to protect against diversion and abuse.
• State health departments, health providers, and public and private agencies are encouraged to cooperate and collaborate in:
o promotion of advance care planning including the provision of information and counseling about health care proxies, palliative and end-of-life options, and the POLST paradigm (or the Medical Orders for Life-Sustaining Treatment Paradigm [MOLST]) for end-of-life decisions through interprofessional education, research, and practice by and among qualified health care providers and professionals, academic institutions, government entities, and community coalitions;
o promotion of the use of hospice care and palliative care through education about their availability and benefits among health care providers, public health professionals, and government entities; and
o improved coordination across the continuum of care to reduce unnecessary and harmful care transitions that result in adverse outcomes for seriously ill patients.
• Federal and state governments are urged to make funding available to:
o support education and training to develop a public health, gerontological, and generalist-level palliative care workforce (including physicians, nurses, social workers, and other health professionals and direct care workers), with the stipulation that such training should incorporate alternative views based on religious and cultural beliefs and values as well as guidance on cultural competency for all health workers;
o implement new laws and palliative systems of care across all health care settings and in the community;
o support essential public health research to inform practice and public policy decision making in population and gerontological health and aging; and
o ensure that health reform initiatives at the federal and state levels are fully implemented through innovations in palliative care delivery (e.g., in medical and health homes), helping to eliminate health disparities among the sickest and most vulnerable patients and frail elderly individuals.
• Federal and state governments are urged to consider making palliative care an essential health benefit and a condition of payment to hospitals and providers by Medicare, private insurers, and (after 2014) state exchanges.
• Federal and state governments are encouraged to eliminate financial barriers to third-party payments for early and comprehensive hospice and palliative care, including at minimum elimination of Medicare’s requirement that hospice care costs be reimbursed only when efforts to cure the patient have been terminated.
• Federal and state governments and agencies are encouraged to collect, analyze, and share data on end-of-life issues through population-based surveys.
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