Dying in America: Experts Commend IOM Report, With Caveats

Veronica Hackethal, MD

December 09, 2014

Four commentaries published online December 9 in the Annals of Internal Medicine reveal different points of view about the Institute of Medicine's (IOM) recent report, entitled Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. In general, the experts agree on the importance of the report but have specific reservations and suggestions for moving forward.

The long-awaited report, released in September, calls for major overhauls to end-of-life care in the United States, and emphasizes a person-centered, family-oriented approach. It also offers specific recommendations that focus on care attuned to patient and family needs and wishes, improved provider–patient communication surrounding advance-care planning, reimbursement for such discussions, better professional education in palliative care, and increased public education and engagement.

In one commentary, the importance of compassionate care and respecting patient and family preferences near the end of life is emphasized by Philip Pizzo, MD, professor of pediatrics at Stanford University School of Medicine in California, who is cochair of the IOM Committee on Approaching Death.

Dr Pizzo highlights the current disconnect between what physicians communicate and what patient's understand. Physicians do not always check to see if patients fully understand that they have a terminal condition and that treatment is noncurative, he notes. Furthermore, physicians offer alternatives to aggressive therapy in fewer than half of clinical encounters, and fewer than half of physicians ask about their patients about end-of-life preferences.

"Unfortunately, as a nation, we do a disappointingly poor job of delivering seamless, compassionate care that honors the individual preferences of those nearing the end of life," Dr Pizzo writes. "This happens mainly because we do not know or uphold what our patients want or desire and neglect to listen or take the time to convey information completely and accurately."

Dr Pizzo emphasizes the importance of having "open and honest" end-of-life discussions with patients. He also urges clinicians to acquire "basic" palliative care skills, and to work as part of a team rather than "handing off" their patients to palliative care experts.

"Treating physicians should remain fully present even after their patients enter palliative care or hospice programs," he explains.

Only a Start

In another commentary, the IOM report is applauded for opening up the discussion about end-of-life care in the United States. However, Debra Ness, MS, from the National Partnership for Women and Families in Washington, DC, and Beverley Johnson, BSN, from the Institute for Patient- and Family-Centered Care in Bethesda, Maryland, say that one shortfall of the report is that it needs to explicitly recognize the partnership between healthcare providers, patients, and families.

Three areas that could benefit from a more "authentic" patient- and family-centered approach, according to Ness and Johnson, are creating patient-centered medical homes from primary care clinics, developing interdisciplinary education programs about palliative and hospice care, and developing new metrics for measuring outcomes and quality improvement.

In their commentary, Scott Halpern, MD, PhD, and Ezekiel Emanuel, MD, PhD, both from the Department of Medical Ethics & Health Policy at the Perelman School of Medicine at the University of Pennsylvania in Philadelphia, acknowledge that end-of-life care in the United States has improved "dramatically" since the early 1980s, but note that "sweeping overhauls in the delivery of end-of-life care [are] greatly needed."

They worry that the report's recommendation to reimburse physicians for discussions about end-of-life care could be "putting the cart before the horse." The best way to conduct such conversations and the best way to train providers have yet to be determined, they note.

"It would be wise to invest in optimizing and disseminating such training programs before incentivizing low-quality discussions by unskilled providers," Drs Halpern and Emanuel write.

They offer nonmonetary ways to encourage such discussions, including reminders in the electronic medical record. In addition, they emphasize the need to reform infrastructure to make patient's wishes actionable and to facilitate outpatient treatment rather than defaulting to hospitalization.

In the final commentary, Jaya K. Rao, MD, MHS, deputy editor of the Annals of Internal Medicine, notes that it is "particularly encouraging" that the report considers end-of-life care to be a public health issue. During her time at the Centers for Disease Control and Prevention (CDC), from 2000 to 2008, Dr Rao worked to advance this issue, which she believes meets the criteria for a public health priority.

The public health approach is consistent with the IOM's emphasis on educating and engaging the public, she writes, and national surveillance surveys should include end-of-life items.

"Hopefully, public health will heed the IOM's call for action and continue to build on the recommendations of the IOM and key public health stakeholders with respect to end-of-life issues," she concludes. "When the IOM writes its next end-of-life report, perhaps public health can influence the next step of recommendations," Dr Rao adds.

Dr Pizzo, Dr Halpern, Dr Emanuel, Ms Ness, and Ms Johnson have disclosed no relevant financial relationships. The work described by Dr Rao was funded by the CDC.

Ann Intern Med. Published online December 9, 2014. Pizzo abstract, Ness and Johnson abstract, Halpern and Emanuel abstract, Rao abstract

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