Misconceptions on palliative care “quite durable”

The American healthcare system is poorly equipped to care for patients at the end of life, according to the September 2014 Institute of Medicine (IOM) report, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.”

“The greatest value of this report is that a non-partisan institution with the gravitas of the IOM has made clear statements about what is needed for patients living with serious illness and facing the end of life,” says James A. Tulsky, MD, one of the IOM committee members. Tulsky is professor of medicine and nursing and chief of palliative care at Duke University Medical Center in Durham, NC.

Reasons for poor end-of-life care are many, according to the IOM report. They include a shortage of doctors proficient in palliative care, reluctance among providers to have direct and honest conversations about end-of-life issues, and inadequate financial and organizational support for the needs of dying patients.

The report recommends a “life cycle” model of advance care planning. The goal is to normalize the process by starting it early, with regular conversations with family members and care providers. “A key recommendation is that advance care planning alone — and certainly advance directives — are not enough,” says Tulsky. “The focus needs to be on the quality of communication about goals of care, not just the fact that it happens.”

The report recommends the following:

  • All clinicians, regardless of specialty, should be competent in basic palliative care: communication skills, interprofessional collaboration, and symptom management.

  • All medical schools, accrediting boards, and state regulatory agencies should bolster their end-of-life training and certification requirements.

  • Payers and healthcare delivery systems must ensure access to skilled palliative care through the course of illness and across settings.

  • The quality of clinician-patient communication must be measured and incentivized in reimbursement, licensing, and credentialing.

  • Healthcare financing incentives must be restructured.

“Providers need to be rewarded for high-quality care that decreases the need for emergency and acute care services, coordinates care across settings and providers, and reduces the use of unnecessary medical services and those not consistent with a patient’s goals of care,” says Tulsky.

Perhaps the most controversial aspect of the report, says Tulsky, is that it recognizes that social determinants have more impact on the quality of life for people with serious illness than what can be done medically.

“Meeting the needs of patients living with serious illness and toward the end of life will require the integration of payment for medical and social services,” he says.

Need to correct misconceptions

Some myths about palliative care “have proven quite durable,” says IOM committee member Salimah H. Meghani, PhD, MBE, RN, FAAN. Meghani is an associate professor at Philadelphia-based University of Pennsylvania’s School of Nursing.

“Most general public and health professionals alike still think of palliative care as a last resort option,” she explains. However, non-hospice palliative care can be incorporated simultaneously with cure-focused treatments throughout the continuum of care — even at the time of diagnosis of a serious progressive illness.

Based on a growing body of evidence, including well-designed clinical trials, the committee found that seriously ill patients who receive both palliative care and usual medical care live longer than similarly ill patients who receive usual care only.

“In addition to living longer, palliative care is associated with improved quality of life, lower symptom burden, improved mood and well-being for patients, and greater satisfaction among families,” Meghani says.

While many referrals to hospice occur too late, says Meghani, evidence suggests that patients’ and families’ experience of care improves considerably once they are referred and agree to hospice care.

A “hospice-palliative care” approach is important for addressing the palliative care needs of patients in the terminal phase of illness. “These patients can meaningfully benefit from social, spiritual, and emotional attention; aggressive pain and symptom management; and support for families, rather than elaborate technological interventions,” Meghani says.

Bioethicists often get involved too late in the process, when care planning is in a “reactionary mode,” says Meghani. Patients may no longer have the capacity to make their own decisions. She recommends that bioethicists take a proactive approach by becoming familiar with the IOM report and its recommendations, and advancing the recommendations for clinician-patient communication and advance care planning.

The IOM report found “major and concerning gaps” with health professional training in end-of-life communication. Bioethicists are ideally positioned to address this particular problem, says Meghani, given their training in mediation and addressing conflicts caused by communication breakdowns.

“They can play a very important role in the communication training of other clinicians — doctors, nurses, social workers, and physician assistants — at their institutions,” Meghani says.

SOURCES

  • Salimah H. Meghani, PhD, MBE, RN, FAAN, Associate Professor of Nursing, Department of Biobehavioral Health Sciences, University of Pennsylvania, Philadelphia. Phone: (215) 573-7128. Fax: (215) 573-7507. Email:meghanis@nursing.upenn.edu.

  • James A. Tulsky, MD, Professor of Medicine and Nursing; Chief, Duke Palliative Care, Duke University Medical Center, Durham, NC. Phone: (919) 668-7215. Fax: (919) 684-0572. Email: james.tulsky@duke.edu.