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

Abstract

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.

Families Speak About Inpatient End-of-Life Care

“…As others have found, treating the patient or family/friends with attributes such as care, dignity, and compassion was the most common positive comment and also a common negative comment. 1,5,8,9 Similarly, this study supported reports that emphasized the importance of keeping the family and friends informed, as this was both the third most common positive comment and the third most common negative comment. 1,9 It is noteworthy that families only rarely identified problems with pain management or respecting end-of-life care wishes despite being primed to address them with the Likert-type scale questions.…”

“…Methodologies included interviews, focus groups, and mailed surveys. 1,[4][5][6][7][8][9][10][11][12] Phone interview findings lend insight into the needs of families when loved ones are dying or have died. Family members focus on "treating the patient as a unique individual, caring attitudes and behaviors, information and education, emotional support for the family, and provider responsiveness," 4(p315) with both positive and negative narrative comments.…”

“…8 Families in another study wanted their loved one treated as a living person and to know when the end of life was near. 9 These same families also voiced frustration with being able to connect with the patient's physician when the patient was hospitalized.…”

Providers' Beliefs about Expressing Condolences to the Family of a Deceased Patient: A Qualitative and Quantitative Analysis

“…2,3 Existing research suggests that bereaved family members find it comforting to receive condolences from medical staff, especially when providers share personal memories of the deceased. [4][5][6] A condolence letter written by an emergency room physician and posted online by a family member attracted more than 2 million website visits and national media attention as an example of the unusual compassion displayed by this physician, suggesting that condolence letters, at least from emergency room physicians, may be the exception rather than the rule. 7 Physicians also grieve when a patient dies, and expressing condolences to the family of the deceased may help physicians cope with the loss of a patient.…”

What are patients' priorities for palliative care research? Focus group study

“…12 They are widely used in social research and are increasingly used in palliative care research. [13][14][15] This paper outlines the results from the focus group stage of the study.…”