The Experience of Life-Threatening Illness: Patients' and Their Loved Ones' Perspectives

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Abstract
Background: Little is known about the actual concerns of patients and families regarding their health care during life-threatening illness and at end of life. Previous research with these groups has focused on their reaction to concerns of the medical community, eg, advance directives, decision making, and pain and symptom management. Objective: To elicit and listen attentively to the actual experiences and major concerns of persons with life-threatening illness, personal/family caregivers, and bereaved individuals regarding their health care and interactions with healthcare system. Design: Thirty-three focus groups were convened to involve 3 categories of individuals: persons with life-threatening illness (n = 77), personal/family caregivers (n = 70), and bereaved persons (n = 81). Three focus groups, 1 of each kind, were held in 11 cities across the United States. Verbatim transcripts were coded and analyzed to identify themes. Results: (1) Persons with life-threatening illnesses indicated that health professionals focus on medical and physical interventions, give too little information, appear uncomfortable talking about death, and do not include family members in conversations. (2) Caregivers reported exhaustion. They said that doctors do not appreciate the impact of the illness on their lives and rarely consult them, although all treatment decisions affect them. (3) Bereaved persons emphasized the loved ones' comfort in the last days of life. They wished that physicians would tell families when the end is near and avoid interrupting the process of dying with medical and often futile tasks. "I'm sorry" is sufficient initially to express the physician's condolences, but families appreciate contact weeks later. Conclusions: Many sources of dissatisfaction with care among persons with life-threatening illness and their families are interpersonal in nature. The physician's respectful presence and demonstration of caring are highly desired, significant interventions for those who cannot be cured of illness and for their loved ones. Making healthcare professionals aware of these concerns may itself bring about some changes in daily practice. Further research is needed to test the most useful skills and behaviors of healthcare professionals in caring for persons with life-threatening illness and their loved ones.