The goal of this research is to discover how best to promote quality of life leading to a peaceful death.Quality of life at the end of life is a topic of national importance - how to ensure that the end of life is as free of pain and other symptoms as possible; that this final phase is one of comfort and dignity; and that each person’s choices regarding that care are respected. The National Institute of Nursing Research (NINR) is the lead institute within the National Institutes of Health (NIH) responsible for coordinating research on palliative care. Whether palliative care research involves conventional or complementary approaches, its purpose is to add scientifically verified evidence to our base of knowledge about appropriate and compassionate health care.
End-of-life research focuses on clinical management of physical and psychological symptoms; communication, ethics and clinical decision-making; support of caregivers; and delivery of care. Investigators in this field represent many disciplines; indeed, they often work in interdisciplinary teams. The goal of this research is to discover how best to promote quality of life leading to a peaceful death.
End-of-life issues are receiving increased research and public policy attention. The House Committee on Government Reform recently called on NINR to testify about trends in complementary end-of-life therapies and NIH research responses to these trends. Early in 1999, NINR initiated a Request for Applications (RFA), which was cosponsored by seven other NIH components and the Agency for Healthcare Research and Quality (AHRQ). NINR sought to generate scientific knowledge leading to improved care for people at the end of life.
As a result, twelve grants have recently been funded - the majority by the NINR. In the behavioral area, NINR researchers are testing interventions for cancer pain, such as guided imagery, in which patients imagine, for example, their immune cells attacking a tumor; cognitive restructuring, where patients can put an unpleasant experience in a less stressful context; and relaxation techniques.
Self-care, increasingly important to the public in managing chronic illness, is also essential at the end of life. In studying end-of-life patients with congestive heart failure and chronic obstructive pulmonary disorder, researchers are analyzing the use of acupuncture, massage therapy, vitamins, herbs, and nutritional supplements, in addition to conventional care.
Technology has both positive and negative effects on end-of-life. Research is underway to investigate the use of life support technology, especially mechanical ventilation, in older individuals. One research study is designed to learn which aspects of maintenance and withdrawal of life support technology are considered problematic and why. Also under investigation is how hospital routines influence decisions about life-prolonging technology.
Another study addresses the positive effects of technology through a computer intervention called Tele-Care for caregiver spouses of patients at the end of life. This intervention will be evaluated to ascertain effects on depression, social support and personal growth of white and Hispanic caregivers. Information gained from this study may guide us in providing more culturally sensitive end-of-life care.
Other studies include the effects of caregiving on caregivers’ health, as well as their bereavement; and their decision-making, particularly regarding enhancing quality of life by tailoring health care to patients’ wishes, and use of advance directives. The latter study is underway in a managed care environment.
NINR is supporting two ongoing investigations that hold promise for significant advances. One has received national attention. Researchers found that a jaw relaxation technique and music therapy, separately or together, when combined with the usual pain medication, significantly reduced pain following major abdominal surgery. This study was published in the May 1999 issue of Pain. The finding is an encouraging example of a novel approach to acute pain management. Better management of acute and chronic pain that effectively decreases the use of pharmacological agents has benefits at the end of life.
Distinguishing emotional triggers of dyspnea from physical ones is important in determining the best treatment for dyspnea at the end of life. NINR-supported research indicates that patients can differentiate dyspnea caused by distress and anxiety from dyspnea stemming from physical causes. This distinction will help providers in selecting the most appropriate therapies.
In addition to studies funded by NINR, other components of NIH are funding research. These components include the National Cancer Institute, the National Institute on Aging, the National Institute of Neurological Disorders and Stroke, the Office of Behavioral and Social Sciences Research, the National Institute of Dental and Craniofacial Research, and the National Center for Complementary and Alternative Medicine. Each is pursuing different avenues of health care research, both conventional and complementary - and each is relevant to patients facing the end of life and their families.
Some research cuts across Institutes: The work of some trans-NIH committees applies to work to improve end-of-life care. The trans-NIH Pain Consortium and the trans-NIH Alzheimer’s Working Group are but two of many formal and informal committees.
As we look to the future, research in this field will allow us to ease distressing symptoms now considered inevitable at the end of life. Research will show how to do more to maintain a patient’s quality of life, sense of control, and dignity.
In the meantime, there is much yet to learn: We need to know more about the appropriate course of treatment during the dying process. We need improved assessment tools to help health care professionals accurately evaluate symptoms at the end of life. A patient’s comfort, needs and wishes for end-of-life care must be respected. Family caregivers’ needs must be addressed so that they become competent in providing pharmacological and other treatments, understand changing nutritional needs, and respond to subsequent changes in function and care. Caregivers need assistance in coping with stress and maintaining their own health.
Research into complementary and conventional therapies will provide important information and new therapeutic approaches for improving care and quality of life at its end. With sufficient emphasis and resources, end-of-life issues and needs can be resolved by the health care research and practice communities. NINR is pleased to have a central role in addressing how we might best achieve these results.
Patricia A. Grady is the director of the National Institute for Nursing Research, National Institutes of Health, Department of Health and Human Services. This article is adapted from testimony she gave last October in a hearing before the House Committee on Government Reform.
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