'Dying in America' IOM Report Calls for Major Reform

Veronica Hackethal, MD

September 18, 2014

The US health system needs major reform to ensure high-quality, affordable, and sustainable end-of-life care for Americans, according to a new Institute of Medicine (IOM) report called Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.

The 507-page document was released on September 17, 2014, and reports recommendations developed during the past two years by a 21-member national committee. The committee included representatives from various fields involved in end-of-life care: doctors, nurses, religious leaders, geriatric specialists, insurers, and lawyers.

The study was supported by an anonymous donor whose identity remained unknown to the committee.

"This is one of the most comprehensive and up-to-date studies that has been performed on end-of-life care for people of all ages who are approaching death," Victor Dzau, president of the Institute of Medicine, said in a press release. "The time is now for our nation to develop a modernized end-of-life care system as envisioned by this report.”

Tzau added that end-of-life care has changed "remarkably" since the IOM's previous report on this issue in 1997, with palliative care now "well-established" in medicine, nursing, and social work, but there is more than ample room for improvement.

Americans hold "strong" views about the type of care they would like to receive at the end of life. They generally prefer to die at home and with the ability to maintain control over healthcare decisions, according to the report. But there is little, or no, planning put in place. Surveys have suggested that more than 25% of adults, including those aged 75 years and older, have given "no thought" to end-of-life care. "Even fewer" have written down their preferences or talked about them with family or providers, according to the report.

In a system aimed at curative rather than supportive and comfort care, such discussions are crucial to honoring the preferences of dying patients and their families.

Challenges to delivering quality end-of-life care include the growing population of aging Americans, increased cultural diversity in the United States, barriers to accessing care among disadvantaged populations, mismatch between services that patients and families need and what they can actually obtain, growing demand that outpaces the availability of palliative care services, and a wasteful and costly healthcare system characterized by time pressures that interfere with communication and care coordination.

Quality end-of-life care needs to be consistent with patients' values, goals, and preferences, the report maintains. To that end, the authors propose a model for advanced-care planning that would require overhauling and restructuring Medicare, Medicaid, and other health plans.

The report offers recommendations for improving end-of-life care in five key fields.

First, delivery of person-centered, family-oriented end-of-life care should be a priority, the report urges. The committee has proposed 12 core components of quality end-of-life care, including frequent evaluation of the patient's physical, emotional, social, and spiritual well-being; management of pain and emotional distress; referral to hospice or palliative care according to patient needs and desires; and frequent updates to the care plan and access to services, in response to the changing needs of the patient and family.

"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," the authors recommended.

Medicare is currently considering reimbursements for such conversations, and some private insurance companies already do so.

The second recommendation addresses provider-patient communication and advance-care planning. Overall, communication quality about end-of-life care between providers and patients is "poor," the reports says, which often results in more intensive and costly treatment.

Because most people involved in "effective" advance-care planning choose quality of life as opposed to living longer, the authors suggest that advance care planning can reduce health costs by avoiding unnecessary and undesirable interventions. Many people, however, have not spoken with their healthcare providers about their wishes, and most do not have advance directives, the authors point out.

"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,” they advise.

These standards should be mutable, in order to respond to changing needs of the population and to reflect new developments in technology and research. Payers and healthcare delivery organizations need to adopt, support, and integrate these standards into care plans and quality care assessments, the report states.

The third recommendation focuses on professional education and development regarding palliative care. Palliative care education has improved "substantially" during the last decade, the authors note, although "serious problems remain." Although hospice and palliative medicine is now a distinct medical specialty and the evidence base for palliative care has expanded, education of clinicians engaged in providing daily care to dying patients needs improvement. Palliative care remains absent from many medical and nursing schools' curricula, and the number of hospice and palliative care specialists still remains small.

"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,” the authors assert.

The fourth recommendation pertains to healthcare policies and payment systems. Although improving the quality of end-of-life care remains an end in and of itself, it could also reduce wasted healthcare dollars by preventing costly acute care and emergency services. Many patients and families often do not want such care, the authors note, and it often provides little benefit. How healthcare dollars are spent needs major reform, according to the committee, with resources directed toward palliative care services such as caregiver training, nutrition services, and home safety.

"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," the authors recommend.

They call for legislation, public reporting of quality measures, and financial incentives aimed at improving quality care, care coordination, and shared decision making. Health information technology, they point out, should be used to achieve these goals.

The fifth and final recommendation calls for increased public education and engagement. Although aging baby boomers may generate increased public interest in this issue, engagement needs to occur at the societal, community, family, and individual levels, the report says.

Important considerations include sponsorship by key stakeholders, identification of target audiences, as well as development and selection of appropriate messages and media.

"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," the committee recommends.

"A palliative 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 report concluded. "The committee believes 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."

The report was funded by an anonymous donor.

Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press, 2014.

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