End of Life

Research Efforts

As the lead NIH Institute for end-of-life research, the National Institute of Nursing Research (NINR) supports science to assist individuals, families, and health care professionals in managing the symptoms of advanced illness and planning for end-of-life decisions.

Research in Palliative and End-of-Life Care

NINR also recognizes that high-quality, evidence-based palliative care is a critical component of maintaining quality of life at any stage of illness, including the end of life.

To advance palliative and end-of-life care, NINR supports research to

  • relieve symptoms and suffering
  • better understand how care needs differ according to setting, culture, and location.

NINR-supported research has found that end-of-life care varies largely in different settings, especially in the provision of hospice care and withdrawal of life support. End-of-life care is beginning to be provided in nursing homes, intensive care units, and in hospice settings, yet standards and quality of care vary across these settings.

Health Disparities and End-of-Life Care

NINR-supported researchers are also examining health disparities at the end of life, especially the impact of culture, ethnicity and geographic location on end-of-life care. Their studies have found that families who speak limited English receive less information and support in the intensive care unit during conferences between clinicians and family members. They have also found geographic differences in the accessibility of hospice care, with rural areas often having limited access.

Nursing Home Care at End-of-Life

While the number of seniors dying in nursing homes is steadily increasing, few studies have examined the quality of end-of-life care in these facilities, or determined if there are differences between rural and urban areas in terms of quality of end-of-life care. A recent research finding indicates that quality may differ, with nursing home residents more likely to have in-hospital death and less hospice use. Understanding the role of hospice-use practices in the quality-of-care problems in nursing homes is essential to overcoming geographic and quality challenges.

Depression and End-of-Life

In another NINR-funded study, systematic assessment for depression was added to the usual care provided in hospice; the patient’s caregivers were also assessed. The researchers found that when this assessment was reported to the interdisciplinary team that cared for the patients and their caregivers, patient depression rates were lower, and quality of life improved without any additional assessment or intervention.

Decision Making at the End-of-Life

Decision making at the end of life, including withdrawal of life support, is a very stressful time for families and decision makers for the terminally ill. One NINR-supported project found that family satisfaction with the decision-making process was associated with how the ICU clinician recommended withdrawing life support, if he or she discussed the patient’s wishes and the family’s spiritual needs, and if the family felt supported during the decision-making process.

Research in end-of-life care continues to be an important part of NINR’s scientific agenda. The significance of this research area is highlighted in the NINR strategic plan. As such, “The Science of Compassion: Enhancing End-of-Life and Palliative Care” is recognized as one of four key themes that will guide the future growth of NINR-supported science.

Directions for Future Research

Further research is needed to

  • develop and test strategies to minimize the physical and psychological burdens on, and better maintain the health of, caregivers, particularly when the person for whom they are caring nears the end of life
  • determine the impact of providers trained in palliative and end-of-life care on health care outcomes
  • create new communication strategies among clinicians, patients, families, and communities to promote decision making regarding complex treatment and care options in the face of life-threatening illness.

To learn more, see NINR's Spotlight on End-of-Life Research and Building Momentum: The Science of End of Life and Palliative Care -- A Review of Research Trends and Funding, 1997-2010.