By INDU SPUGNARDI
Advocates working to improve end-of-life care are welcoming a recent report from the Institute of Medicine. The report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, is focusing nationwide attention on fundamental changes that need to be made to address gaping deficiencies in end-of-life care in the U.S.
"We greatly appreciate and support the institute's effort to move forward a long-needed national agenda to improve palliative care," said Tina Picchi, executive director of the Supportive Care Coalition: Advancing Excellence in Palliative Care. "The advancement of palliative care, including a greater understanding of it by a well-informed public and a greater implementation of it by a well-educated health care community, has been the work of the Supportive Care Coalition for more than 20 years."
Dr. Ira Byock, chief medical officer of the Providence Institute for Human Caring, part of Providence Health & Services, is the author of Dying Well: Peace and Possibilities at the End of Life and The Best Care Possible: A Physician's Quest to Transform Care through the End of Life. Byock said he welcomes the report and the spotlight it is putting on end-of-life care, but he also finds it sobering. "Almost 20 years after the release of the IOM's first report on end-of-life care, Approaching Death, this report shows that we have only moved the needle a few degrees," Byock observed.
The Dying in America consensus report was produced by a 21-member committee charged with presenting a comprehensive picture of the state of end-of-life care in the U.S. and approaches to advance the field. "The bottom line is the health care system is poorly designed to meet the needs of patients near the end of life," said David M. Walker, a former U.S. comptroller general, who co-chaired the committee.
The committee identified several barriers to the delivery of high-quality end-of-life care, including a fee-for-service reimbursement system focused on medically intensive procedures; inadequate numbers of palliative care specialists and lack of basic palliative care education for other providers who care for seriously ill people; and the difficulty Americans, both patients and providers, have in discussing end-of-life wishes as well as their lack of understanding about palliative and hospice care.
These barriers result in patients and families not getting the services they need, particularly in-depth advance care planning and support for social, psychological and spiritual needs. The consequences can be traumatic as these individuals try to navigate a complex and fragmented health care delivery system with little information or support to make informed decisions. This often results in patients receiving care that they do not want or need and that diminishes their quality of life and places significant emotional and financial burdens on their families.
Health care reform
Many palliative care advocates see health reform and its focus on value-based financing and accountability and transparency around quality as a catalyst to integrating the delivery of medical and social services. In a Sept. 23 message to the palliative care field on the IOM report, Diane Meier, the director of the Center to Advance Palliative Care at the Icahn School of Medicine at Mount Sinai, observed, "... as our payment system moves from a fee-for-service, pay-for-
volume system to a global health care budget (where providers accept financial risk and become more focused on quality than quantity) — we are seeing medical-center operating dollars spent on social supports. This underscores the inextricable connection between health care reform and our ability to address social as well as medical needs."
Advocates also view public demand as another crucial driver to changing the current system. "We need widespread consumer demand for whole-person care," Byock said. "Right now people don't know that they have received bad care." Byock predicts the system will be forced to change as patients come to understand that they deserve to be informed about their prognosis and treatment options throughout their illnesses; that they should receive support for their social, emotional and spiritual needs; and that their care should be aligned with their values, wishes and preferences.
The IOM plans to spend the next year holding meetings around the country to spark conversations about the report's findings and recommendations. (See box.) "The time is now for our nation to develop a modernized end-of-life care system," said IOM President Dr. Victor Dzau.
Drew Weil leads an ambitious advance care planning initiative at Ascension Health's St. John Providence Health System in Warren, Mich., where certified facilitators talk to patients about the importance of having such plans in place. He noted, "Only by being proactive about this topic can we truly provide holistic care to people no matter when their moment of crisis may occur."
CHA: The association's booklet "Advance directives: A guide to help you express your health care wishes" can be downloaded here.
Key findings of Institute of Medicine committee assessing end-of-life care
Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life can be downloaded at no cost at iom.edu. The Institute of Medicine report calls for:
Delivery of person-centered, family-oriented end-of-life care — Insurers should cover and providers should deliver comprehensive, coordinated, person-centered care for patients with advanced, serious illness who are nearing the end of life. Trained professionals who are part of an interdisciplinary team should deliver the care.
Clinician-patient communication and advance care planning — Professional societies should develop evidence-based standards that will drive high-quality, ongoing advance care planning discussions between clinicians and patients. Those standards should then be used in payment, licensing and credentialing systems.
Professional education and development — Educational institutions, credentialing and accrediting organizations, regulatory agencies and health care delivery organizations should establish training and requirements to ensure that all clinicians who care for seriously ill patients have palliative care knowledge and
Policies and payment systems to support high-quality end-of-life care — The recommendations in this area are the most far-reaching. The report calls for integrated financing of medical and social services. The current reimbursement system's primary focus on medical care means that social and supportive services such as in-depth clinician-patient conversations and care coordination are inadequately reimbursed or not reimbursed at all.
Public education and engagement — Stakeholders should engage their constituents and provide fact-based information about care of people with serious illness and encourage advance care planning and informed choice based on the needs and values of individuals. Though the political firestorm around reimbursement for advance care planning conversations proposed under the Affordable Care Act has died down, there are still widespread misperceptions and lack of knowledge about what constitutes good care for the seriously ill, according to the IOM committee that drafted the report.
— Indu Spugnardi
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