Shiloh
Editor, Senior Moderator
Source: https://jamanetwork.com/journals/jama/fullarticle/193279
Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers
Karen E. Steinhauser, PhD; Nicholas A. Christakis, MD, PhD, MPH; Elizabeth C. Clipp, PhD, MS, RN; et al Maya McNeilly, PhD; Lauren McIntyre, PhD; James A. Tulsky, MD
Author Affiliations
JAMA. 2000;284(19):2476-2482. doi:10.1001/jama.284.19.2476
Abstract
Context A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking.
Objective To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers.
Design and Setting Cross-sectional, stratified random national survey conducted in March-August 1999.
Participants Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429).
Main Outcome Measures Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups.
Results Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes.
Conclusions Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality.
Dying patients confront complex and unique challenges that threaten their physical, emotional, and spiritual integrity. The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT) documented that many patients die prolonged and painful deaths, receiving unwanted, expensive, and invasive care.1 Patients' emotional suffering at the end of life can be profound, yet physicians are too frequently ill equipped to address this suffering.2,3 In response, medical societies, health care organizations, and the public have identified improved end-of-life care as a high national priority. The American Medical Association and the Institute of Medicine have outlined goals for improved care of the dying, and The Robert Wood Johnson Foundation has devoted millions of dollars to public education on this issue through the Last Acts initiative.4-6
These efforts depend, in part, on certain presumptions regarding how dying patients and their families define quality at the end of life. During the latter part of the 20th century, advances in biomedical technology propelled us to see a "good" death as one involving the fight against disease. Partly in response to this view, the modern hospice movement emerged, redefining a good death as one that included acceptance and closure, most often at home. Unfortunately, empirical support for a notion of a good death that might best structure end-of-life care is lacking, as is a comprehensive understanding about how the definition of a good death might vary across relevant constituencies.
Empirical evidence defining a good death would assist efforts to improve end-of-life care by documenting the breadth of preferences of dying patients and their families. Such data would provide clinicians with information to help guide patients through this challenging and uncertain time. Therefore, we investigated what patients, family members, physicians, and others consider to be important attributes at the end of life...
Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers
Karen E. Steinhauser, PhD; Nicholas A. Christakis, MD, PhD, MPH; Elizabeth C. Clipp, PhD, MS, RN; et al Maya McNeilly, PhD; Lauren McIntyre, PhD; James A. Tulsky, MD
Author Affiliations
JAMA. 2000;284(19):2476-2482. doi:10.1001/jama.284.19.2476
Abstract
Context A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking.
Objective To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers.
Design and Setting Cross-sectional, stratified random national survey conducted in March-August 1999.
Participants Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429).
Main Outcome Measures Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups.
Results Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes.
Conclusions Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality.
Dying patients confront complex and unique challenges that threaten their physical, emotional, and spiritual integrity. The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT) documented that many patients die prolonged and painful deaths, receiving unwanted, expensive, and invasive care.1 Patients' emotional suffering at the end of life can be profound, yet physicians are too frequently ill equipped to address this suffering.2,3 In response, medical societies, health care organizations, and the public have identified improved end-of-life care as a high national priority. The American Medical Association and the Institute of Medicine have outlined goals for improved care of the dying, and The Robert Wood Johnson Foundation has devoted millions of dollars to public education on this issue through the Last Acts initiative.4-6
These efforts depend, in part, on certain presumptions regarding how dying patients and their families define quality at the end of life. During the latter part of the 20th century, advances in biomedical technology propelled us to see a "good" death as one involving the fight against disease. Partly in response to this view, the modern hospice movement emerged, redefining a good death as one that included acceptance and closure, most often at home. Unfortunately, empirical support for a notion of a good death that might best structure end-of-life care is lacking, as is a comprehensive understanding about how the definition of a good death might vary across relevant constituencies.
Empirical evidence defining a good death would assist efforts to improve end-of-life care by documenting the breadth of preferences of dying patients and their families. Such data would provide clinicians with information to help guide patients through this challenging and uncertain time. Therefore, we investigated what patients, family members, physicians, and others consider to be important attributes at the end of life...