Dying in America Improving Quality and Honoring Individual Preferences Near the End of Life (2015) / Chapter Skim
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From page 1... ...
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 mak ing, provisions of the Patient Protection and Affordable Care Act (ACA) , and efforts to develop quality measures to enable account ability.
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From page 2... ...
Many people near ing the end of life are not physically or cognitively able to make their own care decisions. It is often difficult to recognize or iden tify when the end of life is approaching, making clinician-patient communication and advance care planning particularly important.
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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 pri vate 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 engage ment, which collectively offer a roadmap for progress in the na tion's approach to end-of-life care and management.
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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 ef fective advance care planning and shared decision making among patients and families, including seriously ill children and adoles cents, 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 technolo gies, including electronic health records; • growing recognition of and support for the role of caregivers; and • efforts to develop quality measures to enable accountability.
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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 plan ning; 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.
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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.
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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 longterm 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.
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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.
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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.
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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 exper tise and training; • include coordinated, efficient, and interoperable information trans fer 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 set tings where they receive care (including health care facilities, the home, and the community)
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From page 11... ...
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.
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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
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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.
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Recommendation 3. Educational institutions, credentialing bodies, ac crediting boards, state regulatory agencies, and health care delivery organizations should establish the appropriate training, certification, and/or licensure requirements to strengthen the palliative care knowl edge and skills of all clinicians who care for individuals with advanced serious illness who are nearing the end of life.
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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.
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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.
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Specifically, actions should • provide financial incentives for − edical and social support services that decrease the need for m emergency room and acute care services, − coordination of care across settings and providers (from hos pital 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 in corporate advance care planning to improve communication of individuals' wishes across time, settings, and providers, document ing (1)
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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.
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Recommendation 5. Civic leaders, public health and other govern mental agencies, community-based organizations, faith-based organi zations, 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.
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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.
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