Promoting Excellence : A Position Statement from American Nursing Leaders

Advanced Practice Nurses Role In Palliative Care

July 2002

Dear Colleague,

Nurse specialists play an essential role in delivering palliative care in a variety of settings and circumstances in the United Kingdom and other parts of the world. Recognizing the work of pioneering advanced practice nurses in the United States, the Promoting Excellence in End-of-Life Care national program of The Robert Wood Johnson Foundation convened a group of acknowledged leaders in American nursing to consider the state of advanced practice nursing in palliative care and make recommendations for future development of this specialty focus of nursing practice.

On July 9 and 10, 2001, a meeting of the listed participants was held in Philadelphia. The discussions and deliberations of the meeting built on a survey and interview with the participants and other “key informants” in the field of palliative care nursing. A writing team comprised of Constance Dahlin, Meg Campbell and Ruth McCorkle drafted a statement reflecting the consensus of those present at the July 2001 meeting. The draft was circulated to the attendees and underwent multiple iterations. The final statement represents a consensus of those signatories.

The Promoting Excellence in End-of-Life Care program is pleased to support the dissemination of this statement and the recommendations it contains. Advanced practice nursing specialists with expertise in palliative care represent a critical resource for meeting the needs of dying Americans and their families.


Ira Byock, MD, Director
Jeanne Sheils Twohig, MPA, Deputy Director
Promoting Excellence in End-of-Life Care

“Much knowledge has accrued about what makes for good palliative care, and nurses have been in the forefront of efforts to improve quality of life for patients and families throughout the experience of illness.”[1]

“Nursing as a discipline is uniquely qualified to provide comprehensive, effective, compassionate and cost-effective care...”

Background

As America moves into the 21st century, a new health care crisis surrounding how people die is occurring. In the beginning of the 20th century people died at an earlier age and did not enjoy the fruits of preventive care. By comparison, Americans now live longer creating a phenomenon known as the graying of America. In addition, Americans are living with many more chronic illnesses. The challenge of caring for the chronically and terminally ill aging population is increased by shortages of health care providers and, in particular, nurses. These changes have resulted in an erosion of the ability of health care providers to respond to the chronically and terminally ill on an individual and societal level.

The number of Americans living with advanced age and/or chronic illness continues to increase dramatically resulting in an increased need for specialized pain and symptom control. In addition, family members are assuming the majority of the care. A recent Gallup poll showed that 90 percent of Americans prefer to die in their own homes, while only 20 percent can realistically expect to achieve this goal.[2] The problem will only worsen in the near future. Many Americans can expect to enter a nursing home before they die.[3,4] The challenge of caring for the chronically and terminally ill aging population is hindered by a lack of health care providers who have training and expertise in this area of practice.[5] Therefore, there is a significant limitation in the ability to respond to the chronically and terminally ill on a societal level. Death and dying are no longer taboo topics in American society. However, access to high quality palliative care at the end of life is not universally available, and the gains with regard to end-of-life care that have been made in the past decade are at risk given the significant growth of the elderly population and a shortage of expert practitioners.

Since many deficiencies in care reflect system problems, policymakers, consumer groups and purchasers of health care should support better tools and strategies for improving the quality of care and holding health care organizations accountable for care at the end of life.[5]

One demonstrated and cost effective response to this health care crisis is better utilization of advanced practice nurses (APNs).[6-16] As members of the interdisciplinary team of health care providers, APNs have the knowledge and expertise to make substantial contributions to meeting the patient and family members’ needs while maintaining social and fiscal accountability.

Palliative Care

Palliative care refers to interdisciplinary team-based care for persons and family members experiencing life-threatening illness or injury, that addresses their physical, emotional, social and spiritual needs and seeks to improve quality of life across the illness/ dying trajectory. The Last Acts Precepts of Palliative Care states, “Palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and family. The goal of palliative care is to achieve the best possible quality of life through relief of suffering, control of symptoms and restoration of functional capacity while remaining sensitive to the personal, cultural and religious values, beliefs and practices.”[17]

Advanced Practice Nursing

The advanced practice registered nurse has a master’s or doctoral degree in nursing, including a concentration in a specific area of nursing, as well as ongoing clinical experiences. Advanced practice registered nursing has evolved into the roles of Clinical Nurse Specialist (CNS), Nurse Practitioner (NP), Nurse Anesthetist (CRNA), and Nurse Midwife (CNM). APNs who specialize in palliative care are most often academically prepared to serve in the roles of CNS or NP. In addition to direct practice, other roles of the advanced practice nurse include: educator, consultant, researcher and leader.[18]

While many health care disciplines are concerned about improving care at the end of life, the nursing profession is particularly well suited to lead these efforts in view of the scope and standards of advanced practice. Nursing’s social policy statement indicates that nurses “attend to the full range of human experiences and responses to health and illness without restriction to a problem-focused orientation; integrate objective data with knowledge gained from an understanding of the patient’s subjective experience; apply scientific knowledge to the processes of diagnosis and treatment; and provide a caring relationship that facilitates health and healing.”[19]

Nursing as a discipline is uniquely qualified to provide comprehensive, effective, compassionate and cost-effective care and nurses serve as role models for members of other disciplines in promoting quality of life and quality of dying.[20,21] With advanced knowledge of the physical, emotional, social and spiritual needs of seriously ill patients, APNs are prepared to model optimal care and to assume leadership roles in palliative care, both in practice and public policy arenas.[22] Surveys indicate that the American public expresses a high level of trust in nurses and their ability to provide valuable life-affirming interventions even as death approaches.[23]

Given that nurses are in every practice setting where patients are cared for and eventually die, advanced practice nurses are uniquely qualified and positioned to address the myriad needs facing individuals with life-limiting progressive illness. Clearly, collaboration with other providers (e.g., physicians, social workers) must occur to attend to these vulnerable patients, but APNs have the knowledge and clinical judgment to prescribe, coordinate, implement and evaluate a comprehensive plan of care.

All constituencies interested in health care when faced with a life-limiting illness will hope to personally receive care that promotes the quality of every remaining day of life. Advanced practice nurses provide the expert care to make this hope a reality as they “Cure sometimes, relieve often, and comfort always.”[24]

Participants & Endorsers
Recommendations
References


Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit PromotingExcellence.org for more resources.

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