Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life

For patients and their loved ones, no care decisions are more profound than those made near the end of life. For the millions of Americans who work in or with the health care sector—including clinicians, clergy, caregivers, and support staff—providing high-quality care for people who are nearing the end of life is a matter of professional commitment and responsibility. Health system managers, payers, and policy makers, likewise, have a responsibility to ensure that end-of-life care is compassionate, affordable, sustainable, and of the best quality possible.

A substantial body of evidence shows that broad improvements to end-oflife care are within reach. In Dying in America, a consensus report from the Institute of Medicine (IOM), a committee of experts finds that improving the quality and availability of medical and social services for patients and their
families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system.

The Pressing Need to Improve End-of-Life Care
A number of factors make the IOM study particularly timely, including the rapidly increasing number of older Americans with some combination of frailty, physical and cognitive disabilities, chronic illness, and functional limitations. The U.S. population also is quickly becoming more culturally diverse, heightening the need for responsive, patient-centered care. In addition, the nation’s health care system is increasingly burdened by factors that hamper delivery of high-quality care near the end of life, including

• barriers in access to care that disadvantage certain groups;
• a mismatch between the services patients and families need and the services they can obtain; Improving the quality and availability of medical and social services for patients and their families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system.
• inadequate numbers of palliative care specialists and too little palliative care knowledge among other clinicians who care for individuals with serious advanced illness; and
• a fragmented care delivery system, spurred by perverse financial incentives, that contributes to the lack of service coordination across programs and unsustainable growth in costs.

Opportunities for Improvement

Although the systems that support people at the end of life face increasing challenges and strain, there are new and encouraging opportunities for improvement. For example, there is growing knowledge within medical and social care communities about how to better engage patients and families in advance care planning and shared decision making, including seriously ill children and adolescents who may be able to participate in their own end-of-life care decisions. Other promising opportunities to improve care include utilization of new communications technologies, growing recognition and support for family caregivers, and the development of quality measures to increase accountability. Finally, according to the IOM committee, the greatest potential for positive change may lie in health care system reforms that affect the organization and financing of health services.

The committee makes recommendations in the areas of care delivery, clinician–patient communication and advance care planning, professional education and development, payment systems and policies, and public engagement and education.

Delivery of Person-Centered, Family-Oriented End-of-Life Care
Ideally, health care should harmonize with social, psychological, and spiritual support to achieve the highest possible quality of life for people of all ages with serious illnesses or injuries. Toward this end, the IOM committee recommends that integrated, person-centered, family-oriented, and consistently accessible care near the end of life be provided by health care delivery organizations and covered by government and private health insurers.

The committee finds that a palliative approach typically affords patients and families the highest quality of life for the most time possible. For the purposes of the report, the committee defines palliative care as that which provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness and their families. Palliative care may begin early in the course of treatment for a serious condition. 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.

Although palliative care is well established in most large hospitals and professional education programs, the committee identifies the need for greater understanding of the role of palliative care—by both the public and care professionals—as one of the greatest remaining challenges in the delivery of high-quality end-of-life care.

See the full report here: http://www.iom.edu/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx

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