A Call to Action: The IOM Report
IOM Revisits Progress, Pressing Need for Improvement in End-of-Life Care
On September 17, the Institute of Medicine (IOM), which is the independent health arm of the National Academy of Sciences, issued a report titled Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. This report shines a bright national spotlight on the disconnect between how Americans wish to be cared for at the end of their lives and what actually happens to them—and the mismatch between the services these patients and families need and the services that are currently offered to them.
Nearly 2 years in the making, the 500-page document represents the consensus of an expert panel that included a half-dozen leading physicians in hospice and palliative medicine—many of whom are also leaders in AAHPM. Dying in America is a follow-up to the IOM’s 1998 report Approaching Death: Improving Care at the End of Life and its 2002 pediatric companion document, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. The new report charts both areas of progress and lack of progress since those previous landmark reports, and it concludes, “The IOM committee believes 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.” In other words, palliative care at its best should be a priority.
“The report finds that the US healthcare system is poorly designed to meet the needs of patients near the end of life and, because of this, patients and families are suffering,” notes Jean Kutner, MD MSPH FAAHPM, professor at the University of Colorado School of Medicine; chief medical officer at University of Colorado Hospital; a member of IOM’s Committee on Approaching Death, which produced the new report; and president of the AAHPM Board of Directors. “The committee concluded that major changes to the healthcare system are needed to meet patients’ end-of-life care needs and informed preferences in a high-quality, affordable, and sustainable manner.”
The report also highlights healthcare system fragmentation, disparities in access, insufficient palliative care specialists, and general lack of knowledge about palliative care among both healthcare professionals and the public. However, its evidence also suggests that broad improvements in end-of-life care to make it compassionate, affordable, sustainable, and high quality are within reach—and that such improvements could have a significant impact on the sustainability of the healthcare system as a whole.
Other key recommendations from the IOM report address the use of new communication technologies, including electronic storage systems for advance directives and similar materials; expanded recognition of and support for family caregivers; development of quality measures to increase provider accountability; universal palliative care education and training for professionals; public education to improve understanding of the role of palliative care; better integration and coverage of medical and social services; and other system reforms for organizing and financing healthcare services, including incentives for home-based care and end-of-life counseling by physicians.
Palliative care could be a major part of the answer, the report finds, although many physicians don’t understand it and have been slow to make referrals to this important service. “The committee finds that a palliative approach typically affords patients and families the highest quality of life for the most time possible,” the report states, defining 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 can begin early in the course of treatment, while hospice care’s comprehensive, socially supportive, pain-reducing, and comforting alternative to medically centered interventions is an important part of addressing palliative care needs in those patients who have limited life expectancy.
Committee participants also extolled IOM’s commitment to building its whole process on a solid base of medical evidence—a commitment for which the institute is well known and which gives its recommendations considerable credibility, says Christian Sinclair, MD FAAHPM, assistant professor of palliative medicine at the University of Kansas Medical Center and a member of both the IOM committee and AAHPM’s board. “With so many great experts in the room, we had to make sure any opinions we may have were backed by a robust set of facts,” he says.
“This report is also a materials list of evidence for whatever blueprint we want to start drawing as we build and shape our future. From here it is important to start organizing around whatever themes resonate with the Academy membership and begin to construct a future in which we can all be invested and proud,” Dr. Sinclair says.
How Were the Recommendations Compiled?
IOM’s 21-member Committee on Approaching Death, which involved experts in hospice and palliative care, aging and geriatrics, consumer advocacy, spirituality, ethics, clinical decision making, and healthcare financing, began meeting in February 2013. With a charge to “conduct a consensus study that will produce a comprehensive report on the current state of medical care for persons of all ages with a serious illness or medical condition who may be approaching death,” the committee conducted six in-person meetings, three public hearings, and site visits while commissioning research papers and soliciting online testimony. Committee members were actively involved in drafting and reviewing the consensus report, which was also reviewed by a number of other experts in the field, including Academy members.
“We began the process by reviewing our charge and identifying the key components that would make up the report—ie, clinical care, communication and advance care planning, professional education, health policy and financing, and public education,” explains committee member James Tulsky, MD FAAHPM, professor of medicine and nursing and chief at Duke Palliative Care in Durham, NC.
“Committee members then assigned themselves to the different topic areas based on interest and expertise. The committees, together with IOM staff, began the long, arduous process of reviewing the literature in those areas and identifying the gaps. We held public events in three cities, where invited experts as well as the public came to offer their insights. We also commissioned reports to learn more about areas where we felt the evidence was lacking. Reflecting on these data, we engaged in spirited debate about their interpretation and appropriate recommendations that ought to ensue,” Dr. Tulsky says.
"The report reinforces and confirms the importance of hospice and palliative medicine in care of people with advanced, serious illness, recommending access to, and payment for, comprehensive, multidisciplinary hospice and palliative care and advance care planning, reportable quality metrics, and engagement of patients and their families in shared decision making.”
—Jean Kutner, MD MSPH FAAHPM
Findings of the Report
“The most important part of the report is truly the depth to which it speaks to many different key issues,” Dr. Sinclair says. “Different audiences will find something in this report to rally behind and begin to shift the levers for better care for those with serious illness. For members of the Academy, I think the two areas that will resonate most are education and policy. The education section makes a case for meeting the existing and upcoming palliative care needs of the country by reinforcing the growth of the specialty and, most importantly, by expanding the call for palliative care skills to all healthcare professions and disciplines.” AAHPM and HPM professionals will have a key role in disseminating such education on the core principles and practices of palliative care throughout the healthcare system.
“The policy section tackles some of the weighty macro-issues of government and private-sector funding for both health care and social support, with an emphasis on better integration, something I know many AAHPM members try to do clinically on a micro-level every day,” Dr. Sinclair says. Regarding health policy, the report states: “Federal, state, and private insurance and healthcare 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.”
“What we are saying here is that Medicare and other insurers ought to pay for services such as food, housing, caregiver support, and transportation for seriously ill people when doing so will enhance their quality of life and reduce their dependence on undesired acute care interventions, such as emergency department visits and prolonged hospitalizations,” Dr. Tulsky says. “This is radical and yet, for the palliative care clinician who sees these cases every day, represents obvious common sense,” he explains.
“My second favorite piece is Recommendation Two,” says Dr. Tulsky. “It states, ‘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.’ This recommendation emphasizes that quality of communication should be a criterion of the quality of care and that we should find ways to measure it. Given that the family meeting is a part of the palliative care clinician’s procedure, it is powerful to see this proposal achieve such high priority.”
What Does It Mean to Academy Members?
“The report reinforces and confirms the importance of hospice and palliative medicine in care of people with advanced, serious illness, recommending access to, and payment for, comprehensive, multidisciplinary hospice and palliative care and advance care planning, reportable quality metrics, and engagement of patients and their families in shared decision making,” says Dr. Kutner. “There is something in the report for everyone, and we can all take responsibility for both disseminating the findings and recommendations and taking action in our own communities and organizations.”
Dr. Kutner hopes the report will raise the level of the national dialogue about end-of-life care beyond rhetoric to evidence and rationality. “The findings and recommendations are consistent with the Academy’s strategic priorities in enhancing the hospice and palliative care workforce and enhancing awareness of hospice and palliative care and quality measurement while reinforcing a number of the Academy’s current initiatives,” she says.
“The Academy and its members need to understand that this report can serve as a fountain for well-supported ideas to implement at the local, state, and national levels,” Dr. Sinclair says. “If we merely pat ourselves on the back (for its acknowledgement of palliative care) and this report gathers dust on the digital shelf, we are missing a great opportunity,” he adds.
“There are many great pieces of information poised for dissemination, which will hopefully lead to action,” Dr. Sinclair says. “From working with the Academy’s board for the past 5 years, I think nearly every AAHPM committee, task force, and work group could find something in the report from which to establish long-term goals. What is clear to me from participating in this process is that we have the potential and responsibility to do much more than mine this report for sound bites and slide decks.”
“The report provides the Academy and its members a bully pulpit from which to advocate for improved care for patients with serious illness,” Dr. Tulsky says. “It also offers a series of clear recommendations that we can encourage legislators, administrators, and insurers to adopt. I am confident that many of the recommendations will be adopted, although some will take more time than others. In doing so, our field will grow in size, importance, and integration with the rest of the healthcare field. But even more importantly, the quality of life of people living with serious illness will also be improved.”
Editor’s Note: AAHPM is actively participating in coalition calls to explore how to disseminate the findings of Dying in America and will be collaborating with other advocacy groups going forward. What do you think about the report, its recommendations, and what the field of hospice and palliative medicine should be doing to help advance them? To read more about the report and share your comments, visit the AAHPM blog.
For more information, visit the IOM’s website. Hardcover and paperback copies of the full report are available for purchase, but it also can be read online for free. On the IOM website, you will find a 4-page brief of the report, a booklet of key findings and recommendations, an interactive quiz, and a 1-hour video from the report’s release, held in Washington, DC, on September 17.