Journal of palliative medicine
-
Few studies have examined the role of patient age on family experiences of end-of-life care. ⋯ The FS-ICU and QODD questionnaires performed differently across patient age groups. Assessments of family satisfaction and quality of dying and death were higher in the oldest group, particularly in the area of clinician-family communication. Studies of the dying experience of older adults may not generalize to patients of other ages, and study instruments should be validated among different age groups.
-
The American College of Cardiology Foundation/American Heart Association (ACC/AHA) Guidelines for the Management of Heart Failure recommend palliative care in the context of Stage D HF or at the end of life. Previous studies related to heart failure (HF) palliative care provide useful information about patients' experiences, but they do not provide concrete guidance for what palliative care needs are most important and how a palliative care program should be structured. ⋯ HF patients and their family caregivers supported early integration of palliative care services, particularly psychosocial support and symptom control, using a collaborative team approach. Future research should test the feasibility and effectiveness of integrating such a program into routine HF care.
-
The terms symptom burden and symptom distress are frequently seen in palliative care literature yet are used in multiple ways ranging from addition of symptom scores to more in-depth assessments of interference in function. Patient input to date has had little role in these varied definitions yet previous reviews have suggested the importance of such input. ⋯ Further, any patient rating one or more symptoms on the ESAS ≥7 is at high risk of self-defined burden and likely to be experiencing significant impact on physical, emotional and social functioning. Further work should look at which aspects of symptom management best promote a lessening of perceived burden.
-
Diagnosis of a lethal fetal diagnosis (LFD) early in pregnancy is devastating for parents. Those who choose to continue with the pregnancy report intense emotional reactions and inconsistent, often insensitive treatment by health care providers. This qualitative descriptive study sought to clarify the experiences and needs of families in order to design responsive perinatal palliative care services, and to establish the feasibility and acceptability of conducting intensive interviews of pregnant women and their partners during their pregnancy with a LFD. ⋯ The theme "My Baby is a Person" reflects parents' unanimous desire to honor and legitimize the humanity of their unborn baby. In the dimension of Interactions of Others, three themes were found. "Fragmented Health Care" describes parent's disjointed and distant encounters with multiple providers. "Disconnected Family and Friends" describes the lack of understanding of what the families were experiencing. "Utterly Alone," which crosses both dimensions, expresses how the parents' sense of social isolation adds to their personal sense of loss and loneliness. Recommendations are made for palliative care's role in respecting and validating the experience of parents living through a doomed pregnancy.