Palliative medicine
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Palliative medicine · Apr 2022
"I think that she would have wanted. . .": Qualitative interviews with bereaved caregivers reveal complexity in measuring goal-concordant care at the end of life.
Experts consider goal-concordant care an important healthcare outcome for individuals with serious illness. Despite their relationship to the patient and knowledge about the patient's wishes and values, little is known about bereaved family caregivers' perceptions of how end-of-life care aligns with patient goals and preferences. ⋯ Bereaved caregivers commonly rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Communication, relationships and humanistic care, and care transitions are modifiable quality improvement targets for patients with advanced cancer.
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Palliative medicine · Apr 2022
Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative study.
Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making. ⋯ We found that clinical information and psychosocial support aid parents in decision-making. Information is best tailored to health literacy. Psychosocial support can be provided by experienced, informed counselors, social services and sibling support, distinguishing between verbal and non-verbal coping preferences, and calm, familiar architecture. Intense emotions may hinder absorption of clinical information, therefore interventions to aid emotion regulation and reduce cognitive load may be looked at in further research. Adjustment of the Situations, Opinions and Options, Parents, Information, Emotions framework based on our results can be evaluated.
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Palliative medicine · Apr 2022
An examination and proposed definitions of family members' grief prior to the death of individuals with a life-limiting illness: A systematic review.
Research has extensively examined family members' grief prior to the death of an individual with a life-limiting illness but several inconsistencies in its conceptualization of related constructs, yet significant conceptualization issues exist. ⋯ We found grief occurring before the death of a person with a life-limiting illness, which we termed pre-death grief, is comprised of two distinct constructs: anticipatory grief and illness-related grief. Anticipatory grief is future-oriented and is characterized by separation distress and worry about a future without the person with the life-limiting illness being physically present. Illness-related grief is present-oriented and is characterized by grief over current and ongoing losses experienced during the illness trajectory. These definitions provide the field with uniform constructs to advance the study of grief before the death of an individual with a life-limiting illness.