Advocates Call on Nurses to Take Leading Role in Palliative Care

First, the good news: More people in the United States are living longer. The not-so-good news? Many are also living sicker, managing multiple chronic conditions, and creating a growing need for palliative care, which focuses on symptom relief and optimizing quality of life at all stages of serious illness.

The problem, advocates say, is that there is a shortage of palliative care providers.  Nurses, they say, can help fill the void.

Nurses are “ideal providers” of palliative care, according to a report on the future of nursing by a committee of nurses and other health experts that was released in 2010 by the Institute of Medicine (IOM).  “Palliative care is a model that is consistent with basic nursing values, which include caring for patients and their families regardless of their age, culture, socioeconomic status, or diagnoses, and engaging in caring relationships that transcend time, location, and circumstances.”

Leading nurses agree. “The essence of palliative care is embodied in nursing care,” said Cynda Rushton, PhD, RN, FAAN, professor of nursing and pediatrics at Johns Hopkins University and an alumna of the Robert Wood Johnson Foundation (RWJF) Executive Nurse Fellows program (2006-2009).

Nursing, like palliative care, focuses on pain and symptom management, patient advocacy and education of the patient and family. Both fields emphasize holistic care of the patient’s body, mind and spirit; serve family members and caregivers, rather than just the patient; and take patient wishes into account when designing plans of care, according to Todd Hultman, PhD, APRN-BC, ACHP.  Hultman is a nurse practitioner in palliative care service at Massachusetts General Hospital and past president of the Hospice and Palliative Nurses Association.

In palliative care, nurses are full partners with providers from other disciplines and play central roles on care teams. Palliative care teams, by definition, must include a physician, a nurse and a social worker, and often include spiritual leaders and professionals from other fields as well.

As such, palliative care is a model of interprofessional collaboration in health care, which has been linked to improved patient outcomes, more efficient use of resources, and increased retention of nurses, according to the IOM report. “As the delivery of care becomes more complex across a wide range of settings, and the need to coordinate care among multiple providers becomes ever more important, developing well-functioning teams becomes a crucial objective throughout the health care system,” the report states.

Synchronicity Between Nursing and Palliative Care

The synchronicity between nursing and palliative care is no accident. Palliative care grew out of the hospice movement of the 1960s, which was led by Cicely Saunders, a nurse and social worker in Great Britain who later became a physician. Concerned about an overall disregard for dying patients in traditional hospital settings, Saunders founded the world’s first modern hospice in 1967, and drew on her nursing background in the process.

Meanwhile, Florence Wald, RN, MSN, FAAN—the then-dean of the Yale School of Nursing—learned about and was inspired by Saunders.  She opened the first hospice in the United States in 1971. Hospice care, which has a strict focus on the end of life, contributed to the development of palliative care, which covers patients who have serious health conditions at all stages of life.

Since then the field of palliative care has blossomed, and nurses have played a critical role in its growth, Hultman said. They have conducted groundbreaking research in the field, especially in the area of psycho-social and spiritual care, which helps patients and families cope with the emotional challenges of terminal and life-limited illnesses. Another key area of nurse research has been in self-care of the clinician, which helps providers stave off “compassion fatigue.”

Nurses have also helped develop a newer branch of the field concerning pediatric patients, and they have played a vital role advocating for public policies on behalf of their patients. In the early 1980s, thanks in part to the work of nursing advocates, the federal government granted Medicare beneficiaries the right to non-curative medical and support services, Hultman said.

In 1996, RWJF launched a major initiative, investing more than $170 million over 10 years to improve care at the end of life. The effort helped advance the field of palliative care, according to a 2011 report. Improvements include an increasing focus on palliative care in medical and nursing training programs and a growing cadre of certified professionals in the field. The Foundation has also supported nurse scientists and leaders like Rushton to develop the field.

Today, two-thirds of hospitals with more than 50 beds have palliative care programs, said Jay Horton, ACHPN, FNP-BC, MPH, a palliative care nurse practitioner and educator at the Mount Sinai School of Medicine and faculty with the Center to Advance Palliative Care, which receives funding from RWJF.

Still, the field has a long way to go before it is able to meet current and future demands.

Advanced practice registered nurses (APRNs), Horton said, are needed to fill a “huge gap” between the supply of palliative care providers and demand for their services. APRNs educated and trained to carry out many of the professional responsibilities associated with palliative care can be educated more quickly, and at less expense, than physicians, he noted.

Fellowships, residencies, and federal funding programs are needed to incentivize more nurses to specialize in palliative care, Hultman added. “There’s no standard pathway for nurses to enter the field. Unless an agency is willing to train an untrained person from the beginning, it’s hard for nurse practitioners to make entry into the field.”

Experts also say nurse education programs and licensure exams should include more content on palliative care. “Every single nurse needs to have basic competencies in palliative care and to know when patients’ needs have exceeded that [and the patient needs] access to specialists,” Rushton said.

Nurses also need to take on more leadership roles in palliative care, many say. That is the goal of the Palliative Nursing Leadership Institute, a new program supported by the Hospice and Palliative Nurses Association that cultivates emerging nurse leaders in the field. “There is a huge opportunity for nurses to step up, provide leadership and make clear nursing’s unique set of contributions to people who need palliative care,” Rushton said.