Awareness Needed of Patient, Caregiver Preferences During Last Year of Life

Poor communication with health care providers, inadequate professional support, and poor pain management were among problems bereaved caregivers said they faced during their loved one’s last year of life, according to study results published in Palliative & Supportive Care.

“Patients in their last year of life, as well as their relatives, often feel that existent care structures of the health care system do not adequately address their individual needs and challenges,” wrote a research team from Germany. “This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers.”

Researchers conducted a qualitative study of free-text survey comments from 240 informal caregivers of deceased patients from the Last Year of Life Study—Cologne.

Bereaved caregivers reported problems in several categories: poor communication with medical and nursing staff, a lack of professional support for informal caregivers, insufficient psychosocial support for patients, and poor management of pain and other symptoms. According to the study, the problems occurred particularly outside of hospice and palliative care services.

“Respondents often stated that their relative had to be cared for and die outside their own home,” researchers reported, “which the relative did not want.”

The study called for better awareness of the needs of patients and families in the last year of life.

“Addressing individual needs, integrating palliative and hospice care in acute hospitals and other health care structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care,” the authors advised.

Reference:
Knop J, Dust G, Kasdorf A, et al. Unsolved problems and unwanted decision-making in the last year of life: a qualitative analysis of comments from bereaved caregivers. Palliat Support Care. Published online March 10, 2022. doi:10.1017/S1478951522000165