An impending population “shockwave” of elder Americans magnifies the importance of better and more efficient palliative care.

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merica is on the threshold of a population explosion—not a boom but a shockwave. The Urban Institute projects that beginning in 2010, the segment of Americans aged 65 and over will rise to more than 70% by the year 2030.¹ Another report projects that the number of Americans over the age of 85 is expected to double to 8.5 million.² The challenges are immense, but so are the opportunities.
       Demands on the healthcare system will dramatically increase in response to the inevitable onset of more serious, chronic, and advanced illness. Life-limiting and life-threatening illnesses and debilitating conditions will require an enhanced level of resources across the continuum of care. Physicians, nurses, administrators, social workers, and chaplains will be required to deal with challenges in primary and specialty care treatment settings. All areas of specialty care will be compelled to respond with more effective and efficient coordination of disease management.
       As a nation, we will be required to commit additional resources to these evolving demographic realities in terms of healthcare access, delivery, financing, quality, and focus. While primary and acute care treatment is at the foundation of today’s healthcare system, conditions requiring intervention over a more protracted timeframe will be more challenging. One might argue that America is on the threshold of a major re-alignment of what patients and their families will come to expect of the healthcare system. More fundamentally, the question arises as to the ultimate preparedness of the system to address their needs and expectations.

Palliative Care: What it is and What it is Not

       An expectation of extended-care and long-term care programs commencing with a diagnosis is often linked to palliative care. Definitions may vary, and the scope of palliative care intervention may differ, but the objective is common to all care settings: to prevent and relieve suffering and support the best possible quality of life for patients and their families, regardless of the stage of disease.
       Interventions for palliative care are not bound by a patient’s age, since the care extends to those of all ages. Palliative care is not necessarily tied to imminent death, since palliative care ideally begins at the time of diagnosis of a life-threatening or debilitating condition, continuing throughout the management of the chronic condition until the death of the patient and for the bereavement period thereafter. Palliative care is not limited exclusively to the patient; rather, it extends to the patient’s family and support group. Palliative care transcends the confines of any single setting, because the delivery of care employs an interdisciplinary team to evaluate and render care in hospitals, nursing homes, hospice programs, assisted living facilities, and home care.
       More succinctly, palliative care might be defined as extended care: the right care, delivered the right way, at the right time. It aims to identify and respond both reactively and proactively to the physical, psychological, spiritual, and practical burdens of illness. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care.
       Hospice care is completely appropriate at the end of life. Palliative care, however, in 1 form or another, is indicated throughout all phases of life, whenever there are significant burdens from serious illness or trauma. The values that underlie palliative care—namely holistic outlooks, case management, and attention to the patient’s quality of life and personhood—are values that must be integrated into the healthcare system.

Coming to Terms with the Future: A Consensus Approach

       In acknowledging the challenges and opportunities inherent with the appropriate intervention protocols for palliative care, several national palliative care organizations have collaborated to define and promote credible clinical standards and a consensus approach to the delivery of consistent and high quality care. Dialogue and consultation involving more than 100 nationally recognized experts contributed to the emergence of consensus on guidelines for the development and structure of new and existing palliative care services designed to meet current and future needs.
       Professional consensus on what constitutes high quality palliative care is a prerequisite to the effective delivery of such services across the continuum of care. A consensus approach provides credible common ground to begin systematic improvements in palliative care delivery. Achieving consensus fosters the development of a broad-based and enduring palliative care constituency through the dissemination of voluntary guidelines throughout the myriad sectors of the US healthcare system and to policymakers, regulators, and the media.
       The National Consensus Project (NCP) has issued “Clinical Practice Guidelines for Quality Palliative Care,” which are comprehensive, evidence-based, voluntary guidelines intended to inspire national dialogue among healthcare professionals to establish or strengthen existing palliative care programs to improve quality, the efficiency of care delivery, and patient satisfaction. Healthcare professionals are encouraged to use the guidelines to provide state-of-the-art care for those patients suffering from acute and chronically progressive and life-threatening conditions. Within the healthcare industry, the guidelines can lead to improved staff retention and morale by providing support to professionals charged with care of the most complex patients. Ideally, the guidelines set the stage for the development of performance measurements of palliative care, while inviting the nation’s policymakers to consider the guidelines in shaping the nation’s future healthcare policy agenda.

Clinical Practice Guidelines for Quality Palliative Care

       The NCP’s Clinical Practice Guidelines are divided into 8 domains or sections defining the structure and process of care: physical; psychological and psychiatric; social; spiritual; religious and existential; cultural; the imminently dying patient; and ethics and law.
       The availability of palliative care guidelines is important for several reasons and will:
• Facilitate development and improvement of clinical programs, particularly those serving a high proportion of people with acute, chronically progressive, and life-threatening conditions
• Guide clinicians to incorporate vital aspects of palliative care into their practice to improve care for their sickest patients
• Establish accepted definitions of the essential elements in specialist palliative care that promote quality, consistency, and reliability of services
• Foster continuity of palliative care by expanding access across all treatment settings, including hospitals, nursing homes, hospices, and home health.

Core Elements of Palliative Care

       The NCP includes the following key elements of palliative care:
• Patient population: The population served includes patients of all ages experiencing debilitating chronic or life-threatening illnesses, conditions, or injuries.
• Patient- and family-centered care: The uniqueness of each patient and family is respected, and the patient and family constitute the unit of care. The family is defined by the patients or, in the case of minors or those without decision-making capacity, their surrogates. The care plan is determined by the goals and preferences of the patient and family with support and guidance in decision-making by the healthcare system.
• Timing of palliative care: Palliative care ideally begins at the time of diagnosis of a life-threatening or debilitating condition and continues through cure, or until death, and into the family’s bereavement period.
• Comprehensive care: Palliative care employs multidimensional assessment to identify and relieve suffering through the prevention or alleviation of physical, psychological, social, and spiritual distress. Care providers should regularly assist patients and their families to understand changes in condition and the implications of these changes as they relate to ongoing and future care and the goals of treatment. Palliative care requires the regular and formal clinical process of patient-appropriate assessment, diagnosis, planning, interventions, monitoring, and follow up.
• Interdisciplinary team: Palliative care presupposes indications for, and provision of, interdisciplinary team evaluation and treatment in selected cases. The palliative care team must be skilled in care of the patient population to be served. Palliative care teams may be expanded to include a range of professionals based on the services needed. This core group includes professionals from medicine, nursing, and social work. This group may also include a combination of volunteer coordinators; bereavement coordinators; chaplains; psychologists; pharmacists; nursing assistants and home attendants; dietitians; physical, occupational, art, play, child life, and music therapists; case managers; and trained volunteers.
• Attention to the relief of suffering: The primary goal of palliative care is to prevent and relieve the various burdens imposed by diseases and their treatments and consequent suffering, including pain and other symptom distress.
• Communications skills: Effective communication skills are requisite in palliative care. These include developmentally appropriate and effective sharing of information, active listening, determination of goals and preferences, assistance with medical decision-making, and effective communication with all individuals involved in the care of patients and their families.
• Skill in care of the dying and the bereaved: Palliative care specialist teams must be knowledgeable about prognostication, signs and symptoms of imminent death, and the associated care and support needs of patients and their families before and after death, including age-specific physical and psychological syndromes, opportunities for growth, normal and aberrant grief, and bereavement processes.
• Continuity of care across settings: Palliative care is integral to all healthcare delivery system settings (ie, hospital, emergency department, nursing home, home care, assisted living facilities, outpatient settings, and nontraditional environments like schools). The palliative care team collaborates with professional and informal caregivers in each of these settings in order to ensure coordination, communication, and continuity of palliative care across institutional and home care settings. Prevention of crises and unnecessary transfers are important outcomes of palliative care.
• Equitable access: Palliative care teams should work toward equitable access to palliative care across all ages and patient populations, all diagnostic categories, all healthcare settings (including rural communities), and regardless of race, ethnicity, sexual preference, or ability to pay.
• Addressing regulatory barriers: Concerns about drug abuse have led to increased concerns about medically appropriate use of opioid analgesics. While efforts to address abuse are necessary, they should not interfere with medical practice and the care of patients in pain. Palliative care professionals should collaborate with policymakers, law enforcement, and regulators to achieve a balanced and positive regulatory environment for pain management and palliative care.
• Quality improvement: Palliative care services should be committed to the pursuit of excellence and high quality care. Determination of quality requires regular and systematic evaluation of the processes of care and measurement of outcomes data using validated instruments.

How Will the Guidelines Make a Difference?

       Challenged by an aging population and those of any age in need of help in navigating the health system, clinicians require support and expertise. To healthcare providers, access to palliative care programs is vital to meeting the challenge of delivering efficient and effective management of long-term, life-threatening illness.
       Hospitals can use the guidelines to establish or strengthen palliative care programs to improve quality, efficiency of care delivery, and patient satisfaction. The guidelines will also help hospitals meet the quality improvement and pain management standards of the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). Nursing homes can benefit from improved patient outcomes, providing a “roadmap” in caring for chronically ill and functionally impaired patients. Hospice programs that are “branching out” to work in partnership with hospitals, nursing homes, and others will use the guidelines to describe the broad expertise they offer.
       In the past 8–10 years, physicians, nurses, and other healthcare professionals in universities and teaching institutions have championed palliative care efforts to improve care for those seriously ill patients who do not meet hospice eligibility criteria or choose not to elect hospice care. These services have been collectively termed palliative care services. They may be independent of hospice services or contractually related to hospice programs.
       The NCP guidelines are relevant to policymakers, because palliative care provides an effective, efficient way to address systemic shortcomings and improve healthcare for the rapidly growing number of Americans with advanced, chronic illness. Not only does palliative care meet the needs of the sickest patients and their families, it also lowers costs through more effective coordinated care intervention for these patients. Additionally, palliative care can cover the gaps in healthcare services and financing that are typically designed to treat episodic, acute illness, rather than respond to the needs of those with advanced illness and conditions.
       In addition to an expectation of expert care, patients and their families facing serious illness or advanced illness often require guidance in making their way through the complexities of the healthcare system. By selecting a healthcare provider that delivers care consistent with the clinical practice guidelines or, if this is not possible, by requesting a palliative care consultation, patients and families will receive the support and guidance they need to make difficult decisions while maintaining the best possible quality of life.

Models of Palliative Care Delivery

       Palliative care is appropriate for all patients from the time of diagnosis with a life-threatening or debilitating condition, and the delivery of services should be structured accordingly. Palliative care services are most effective when integrated into specific care settings (eg, hospital, nursing home, assisted living, home care, etc.). This requires training in the fundamentals of palliative care for practitioners in a range of primary treatment settings, as well as establishing referral patterns and access to credentialed palliative care specialists and formal palliative care teams.
       Several organizational delivery models for palliative programs are available, inclusive of hospice, such as:
• A consultation delivery team (usually in a hospital, office practice setting, nursing home, or home setting) consisting of a physician, a nurse, and/or social work evaluations
• A dedicated inpatient unit (acute and rehabilitation hospital, nursing home) or a freestanding inpatient hospice
• A combined consultative service team and inpatient unit (hospital and nursing home)
• A combined hospice program and palliative care program (hospital, nursing home, and some freestanding hospice inpatient facilities)
• A hospital- or private practice-based outpatient palliative care practice or clinic
• Hospice-based palliative care at home
• Hospice-based consultation in outpatient settings.
       The palliative care needs of patients and families should be met by a genuine partnership involving palliative care (of any setting) and traditional hospice programs. Close coordination and partnering is critical to ensuring continuity of palliative care throughout the course of illness and across care settings. Palliative care programs will grow to address the needs of those with long and indeterminate life expectancies. Late in the disease course, the complex and intensive terminal care requirements of most patients and families facing the end of life are often best met by comprehensive hospice care.

The Need for Further Expansion of Palliative Care Services

       Repeated surveys of patient preferences and current care outcomes strongly support the need for expanded access to palliative care services. There remains a high prevalence of under-treated pain and other distressing symptoms in hospital, office practice, home care, and nursing home settings among seriously ill patients of all ages and in all stages of illness. In addition, multiple studies document poor communication about the goals of care among healthcare practitioners, patients, and families. Despite the fact that more than 90% of Americans prefer to be cared for at home, more than three-quarters of all deaths in the US occur in hospitals (about 50%) or nursing homes (about 25%).³ Recent research demonstrates high family-caregiver burdens as well as increased morbidity and mortality for the family members of patients with chronic and life-threatening illness.³
       Infant and child mortality rates associated with once-fatal illnesses and conditions are decreasing, and more children now survive severe or life-threatening disabilities. Palliative care for children is influenced by developmental considerations affecting diagnostic, treatment, and communications approaches, as well as options for care. Physical, emotional, and spiritual suffering in pediatric patients and their families is clearly documented in recent studies. Serious illness in children is associated with high levels of uncertainty about prognosis and optimum management strategies, as well as great difficulty in accepting the possibility of death. Advance directives are not recognized for children, although the role of children in shared medical decision-making about their own care is critical. In contrast to older adults, nearly all of whom have Medicare coverage, about 15% of children in the US have no health insurance at all, and those with coverage have widely variable access to palliative care services. Nearly 85% of pediatric deaths currently occur in hospitals where pediatric palliative care services are largely unavailable or inadequate.³
       Further impetus for the expansion of palliative care services is the strong correlation between patient/family care preferences and the services provided by palliative care specialists. Studies show that patients’ top priorities are to be free of physical and psychological distress; to have some control over decisions about their healthcare; to avoid extraordinary life-prolonging treatments; and to improve relationships with and reduce the burden on their families. The evidence base of the hospice experience for patients/families during the last few months of a terminal illness, as well as more recent palliative care outcome studies, demonstrates the ability of palliative care to help patients achieve these goals throughout the trajectory of a progressive or life-threatening illness. Other studies have demonstrated financial benefits associated with palliative care programs, including reduction in hospital length of stay, costs and utilization, and increased numbers of referrals to and length of stay in hospice programs.³
       The need for palliative care in the US can be met through ongoing health professional education in palliative care principles and practice; increasing access to palliative care specialists in hospital, nursing home, and home care settings; promoting timely access to hospice services to all eligible patients; creatively integrating hospice and palliative care programs across treatment settings; and defining appropriate accountability and performance measures for palliative care services.

Endorsements

       Critically important to the successful implementation of voluntary guidelines are review and endorsement offered by healthcare organizations and individual providers across the continuum of care (see Table 1 for a list of organizations that have endorsed the NCP guidelines). These may include associations and societies representing physicians, nurses, social workers, pharmacy, clergy and chaplains, therapists, credentialing organizations, counselors, and other healthcare professionals. Another critical component is the adoption of the guidelines by administrators, trustees, and board members of medical institutions. Medical and nursing schools, residency programs, and advocates for the elderly, disabled, children, and minorities are encouraged to engage in the process of considering the role of palliative care in benefiting their constituencies.

Table 1

       Expressions of support are essential to the ultimate adaptation of the voluntary guidelines in clinical settings. This represents the first step leading to recognition of the need to establish consistent approaches to achieving high quality care and, ultimately, well-defined and credible quality indicators leading to the assessment of care.
       The NCP website (http://www.nationalconsensusproject.org) offers a wealth of information on the guidelines, including a convenient endorsement form that can be submitted by interested organizations.

Act Now or React in Crisis Later

       Long-term care providers have much at stake in the looming shockwave of an aging population and its attendant healthcare implications. These specialty providers can chose to react to the consequences, or an effort can be put forth to prepare for the challenge and opportunities. Two significant steps may be taken now.
       One is for long-term care, assisted living, and nursing facilities to foster and formalize relationships with 1 or more hospices, hospitals, home health agencies, and other community-based resources to ensure continuity of the highest quality palliative care across the illness trajectory. Secondly, but no less urgently, long-term care providers can make an impact by entering into the national dialogue on care standards by reviewing, providing comment, and endorsing the guidelines for quality palliative care.

Reason for Optimism

       There is reason to be optimistic about improving access to palliative care services. As of 2002, more than 25 percent of academic medical centers and well over 950 hospitals (about 20% of all US hospitals) indicate that they provide access to a palliative care program, including hospice. Additionally, nearly a third of the 3,200 US hospices are hospital based. In the last 7 years, more than 1,200 physicians (including 18 pediatricians) have been certified as sub-specialists by the American Board of Hospice and Palliative Medicine, and approximately 7,000 registered nurses, 43 advanced practice nurses, and 1,000 nursing assistants are certified in palliative care.

The Continued Work of the National Consensus Project

       The NCP will enable and sustain a proactive agenda, starting now with the adoption of clinical standards. Healthcare has often been characterized as in crisis in terms of access, cost, and quality. To ensure that patients in need are cared for in a compassionate, competent, and appropriate manner, the NCP will continue to advance issues addressing the structure and process of care, complemented by the physical, psychological, social, spiritual, ethical, and legal aspects of care.
       The Hospice and Palliative Care Coalition governs the NCP. Member organizations include American Academy of Hospice and Palliative Medicine (AAHPM); Hospice and Palliative Nurses Association (HPNA); and the National Hospice and Palliative Care Organization (NHPCO). Betty Ferrell, PhD, RN, FAAN, affiliated with the City of Hope National Medical Center in Duarte, Calif, is the chairperson of the NCP Task Force.
       To learn more about the NCP or obtain free copies of the Clinical Practice Guidelines for Quality Palliative Care, visit http://www.nationalconsensusproject.org. Print copies are available for purchase by visiting the “market place” section of the NHPCO website at http://www.nhpco.org.