Opinions: Essay

What role can nurses play in improving the care of the dying?

by Cindy Hylton Rushton D.N.Sc., R.N., FAAN

When cure is no longer possible, dying people primarily need good nursing care. Nurses witness firsthand the plight of patients throughout the dying process and are able to recognize and appreciate their complex needs. Because of our close relationships with patients, we have unique insights about what patients value and desire for care at the end of life. Patients often trust their nurses to guide them through the dying process and look to them to be their advocates when they cannot do so for themselves. The unique insights of nurses who provide hands-on care to dying people are therefore invaluable in defining the issues and developing workable solutions to improve care of the dying.

Nurses have been, and will continue to be, leaders in end-of-life care. As the largest group of health professionals and those most connected with the comprehensive needs of the terminally ill and their families, nurses have long advocated for humane and dignified care at the end of life. Without competent and caring nurses, end-of-life care risks being reduced to a mechanical exchange devoid of human presence and holistic care. Nurses understand the failings of our current system for caring for the dying and are committed to fundamental reform of our education, practice and social systems.

Specifically, nurses can contribute to fundamental reform of systems to provide end-of-life care by:

  1. Developing creative partnerships with patients, health care professionals, policy makers, and others to make care of the dying a priority.
  2. Documenting the comprehensive needs of dying patients and families and identifying individual, professional, organizational, and societal barriers to quality end-of-life care.
  3. Participating as members of interdisciplinary groups within specialty areas, institutions, or communities to devise specific solutions to address barriers and develop standards for quality end-of-life care (in particular those that address pain and symptom management, holistic care coordination, psychosocial support, and system management).
  4. Advocating for systems of accountability for comprehensive and holistic end-of-life care that includes professional guidelines, protocols, and standards to meet the needs of the dying.
  5. Articulating threats to the provider-patient relationship and advocating for systems of care that protect the patient-provider relationship, particularly at the end of life.
  6. Participating in the development of interdisciplinary pre-service and inservice curriculums that provide students and practitioners with the tools and skills necessary to provide optimal end-of-life care.
  7. Collaborating with patients and potential patients to promote public and professional understanding of the realities that surround end-of-life care.
  8. Advocating for systems for health care professionals, patients, and families to resolve disputes, clarify values and obligations, and support clinically sound and ethically defensible decisions and practices.

Nurses' expertise in pain and symptom management, holistic care coordination, psychosocial support, and systems management are essential for improving care of the dying. To assure quality care at the end of life, attention must be paid to the impact of current health care changes on the nursing profession that undermine the nurse-patient relationship and diminish their contribution to interdisciplinary problem-solving. In particular, the impact of decreasing registered nurse staffing levels, replacing R.N.s with lesser-trained personnel, and systems of managed care on the outcomes of end-of-life care must be evaluated. Nurses remain committed to contributing to fundamental changes that will improve care of the dying.

Cindy Hylton Rushton D.N.Sc., R.N., FAAN, is Assistant Professor of Nursing and Clinical Nurse Specialist in Ethics on the faculty of the Bioethics Institute at The Johns Hopkins University and Children's Center in Baltimore, Md.

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