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.
– Dying in America, IOM Report Brief, September 2014
Over the past year and a half, I had the privilege of serving on the Institute of Medicine’s Committee on Approaching Death: Addressing Key End-of-Life Issues, along with fellow AAHPM members, Patricia Bomba, Eduardo Bruera, Pamela Hinds, Diane Meier, Judith Peres, Christian Sinclair, Joan Teno and James Tulsky. The outcome was the development of the now well publicized report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. It is the first report in nearly two decades to address the care of individuals with serious illness and their families – the care you and I provide each and every day. The study concluded 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.”
For those of you who don’t have time to read the full report, here are a few highlights of some of the key recommendations::
- 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. 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 expertise and training;
- include coordinated, efficient, and interoperable information transfer across all providers and all settings; and
- be consistent with individuals’ values, goals, and informed preferences.
- Care should be characterized by transparency and accountability through public reporting of aggregate quality and cost measures for all aspects of the health care system related to end-of-life care, including quality reporting for advance care planning and communication.
- All people with advanced serious illness should have access to skilled palliative care or, when appropriate, hospice care in all settings where they receive care.
- 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. All clinicians who care for people with advanced serious illness should be competent in basic palliative care, including communication skills, interprofessional collaboration, and symptom management;
- 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.
- 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 report concludes with a reminder that “a person-centered family-oriented approach that honors individual preferences and promotes quality of life through the end of life should be a national priority.” I couldn’t agree more.
These recommendations include action items for everyone – for us as individual clinicians, for us as leaders, for our health care delivery and educational organizations and professional organizations, for legislative and regulatory bodies, for payers, and for individuals and families. How will you act on these findings and recommendations? Have you shared it with your colleagues, the executives in your organization, your legislators, your community organizations? Have you talked with the press? I encourage you to offer your thoughts and reactions to, and how you are leveraging and publicizing, the IOM Report in the comments section of this blog post. The discussion will help us improve the care of our seriously ill patients and their families through the thoughtful work of AAHPM and our respective organizations.
Jean S. Kutner, MD MSPH FAAHPM