The Institute of Medicine (IOM)’s landmark September 2014 report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, identified serious deficiencies in end-of-life care in the U.S. Institutions reacted to the report’s recommendations in various ways.
“The Dying in America report generated a great deal of momentum across organizations and stakeholders,” says Salimah H. Meghani, PhD, MBE, RN, FAAN, an associate professor at University of Pennsylvania’s School of Nursing in Philadelphia. Meghani served on the IOM’s Dying in America committee.
During a recent IOM National Action Conference on policies and payment systems to improve end-of-life care, 40 organizations shared specific plans and organizational commitment to convert the report’s recommendations to action. These included leading medical and nursing bodies, specialty organizations, insurers, health systems, charitable organizations, and public grassroots initiatives.
“It is difficult to take stock of the activities underway,” says Meghani. “They are broad-ranging, and the outcomes will become evident in time.”
There are multiple barriers to implementing the IOM’s recommendations, both at provider and system levels. “At the system level, incentives remain misaligned with what patients and families need and want during an advanced serious illness,” says Meghani.
The health system is gradually shifting away from a fee-for-service delivery model toward value-based models. However, palliative care is not always included.
“From a clinician’s perspective, we need both more training in end-of-life communication, but also more research to generate evidence-based models to improving these communications,” says Meghani. The Centers for Medicare & Medicaid Services (CMS) recently approved advance care planning codes. “Hopefully, this will generate a tide in this direction,” says Meghani.
Matthew R. Kenney, PhD, vice president of mission and ethics at Saint Francis Hospital and Medical Center in Hartford, CT, says there is often a disconnect between treatments or interventions provided for patients and their families, and what is actually needed. “There is also a lack of effective utilization of existing resources,” he says. The following are some underlying reasons for this, according to Kenney:
• Providers often refer patients to hospice too late.
In Connecticut, patients are referred to hospice with an average of two weeks to live, says Kenney. “This does not provide adequate time for the multidisciplinary care team — which should include the physician, nurse, social worker, chaplain, and family — to do the difficult but necessary grief work constitutive of end-of-life care,” he says.
• Some providers lack understanding of what palliative care is and how it can be utilized effectively.
“There is often a misunderstanding that palliative care and hospice are the same thing,” says Kenney. Providers don’t always recognize that palliative care and curative interventions are not incompatible, and can coexist.
“A referral to palliative care is not a sign of failure on the part of the attending physician,” says Kenney. “Rather, it is a recognition that we have an obligation to provide the best possible care for patients and their families.”
• Providers often have end-of-life conversations only after the person is seriously ill.
“The ICU is not the best place to have these conversations, since this is often too late,” Kenney says.
Ideally, end-of-life and advance directive conversations are part of a larger ongoing dialogue between care providers and patients about values, beliefs, and goals of care. Kenney often gives presentations or grand rounds on this topic. He recommends that the conversations occur during a non-clinical office visit with a primary care physician, with a loved one, or other surrogate decision-maker present.
“Of course, for this to be a reality, we need to reimburse physicians for these conversations and give them more than 15 minutes to have them,” he says.
• Providers need better education and training on discussing goals of care with patients.
“Meaningful end-of-life conversations should not be outsourced to the palliative care team because other clinicians are uncomfortable with such conversations,” Kenney says.
Palliative care colleagues, social workers, and chaplains can serve as models of how to conduct these discussions effectively. “But they cannot be expected to shoulder the weight of these conversations alone,” says Kenney.
SOURCES
- Matthew R. Kenney, PhD, Vice President, Mission and Ethics, Saint Francis Hospital and Medical Center, Hartford, CT. Phone: (860) 714-4880. Email: [email protected].
- Salimah H. Meghani, PhD, MBE, RN, FAAN, Associate Professor, University of Pennsylvania School of Nursing, Philadelphia. Phone: (215) 573-7128. Fax: (215) 573-7507. Email: [email protected].
