Volume 7, Issue 1
Ethical Challenges to Respecting and Meeting Patients’ Requests: Lessons from Providing Palliative Care for Coronavirus Disease 2019 Patients
The Psychosocial and Economic Effects of Caring for Terminally Ill Patients: The Case of Hospice Africa Uganda
PDF 514.20 KB
Giving care to a patient at the end-of-life can be a challenging experience. The responsibilities of caregiving may include executing complex physical and mental tasks, financial planning, patient care, decision-making, emotional support and coordination of care.
This mixed-methods observational study aims to identify the psychosocial and economic effects of caregiving for terminally-ill patients by carers on the Hospice Africa Uganda Kampala program. It used both quantitative and qualitative data of caregivers caring for terminally-ill patients attending Hospice Africa Uganda Kampala. Simple random sampling was conducted to select caregivers who were invited to participate in the study.
Results indicate that the majority of patients who were receiving palliative care (60.9%, 103) had been diagnosed with cancer. Most participants (62%, n=105) had spent less than one year caring for their patients, while (18%, n=31) were cared for between 1-5 years. Our results show that the responsibility of caregiving has significant effects on the psychosocial well-being of caretakers. In particular, it reduced the amount of time they spent attending social gatherings and caring for their children, their religious commitment (p<0.05), as well as their level of fatigue and exhaustion (p<0.05), and negatively impacted job finding activities. Conclusion Terminal caregiving has significant effects on the psychosocial well-being and incomes of caretakers, and their ability to find a job alongside caring for the patient. Based on these findings, it is therefore recommended that caregivers be given ongoing support to help them provide care to their own family members and patients with life limiting illnesses early in the disease trajectory. Keywords Psychosocial; Economic effects; Caregivers; Terminally-ill; Patients.
A Community Engagement Model to Drive Advance Directive Discussion and Completion
PDF 417.63 KB
Advance directives (ADs) describe individuals’ preferences for life-sustaining treatments and/or surrogate decision-makers, to help avoid unwanted, burdensome treatments at the end-of-life. However, only 36.7% of adults have completed an AD. There is growing interest in adopting a public health approach to end-of-life care, including ADs. We describe the experience of Honoring Choices Tennessee (HCT) which developed a pilot program, Advance Directives at Work in Tennessee (AD@WorkTN), to enhance AD completion by the general public workforce.
The AD@WorkTN initiative targeted adults in the Tennessee workforce by engaging human resource (HR) leaders in educational presentations. Each workshop provided resources to employers to integrate ADs into the employee orientation and benefits enrollment process. Educational materials, web tools, podcasts, AD forms, and a demonstration of how to complete an AD were
included. Participants were directed to the HCT website which contains the state advance directive documents and with detailed instructions, as well as the co-branded MyDirectives app (MYD), to securely upload completed ADs. In April 2021 a HCT sponsored PBS documentary on advance care planning was produced with statewide distribution.
Over a 2-year period, 58 workshops were conducted for 260 human resources leaders representing 958 businesses. As a result, 23 businesses have included ADs as part of the employee benefit process. Additionally, a 2-year multifaceted public outreach campaign between 2019-21 has reached 2,950 employees and 958 businesses. Approximately 81,500 Tennessee viewers have seen
the Public Broadcasting Service (PBS) documentary on advance care planning. There have been 2,954 visits to the HCT website and 411 visits to the co-branded MyDirectives site.
AD@WorkTN is a promising model to promote integration of ADs into the employee orientation and benefits enrollment processes. Enhanced discussion and completion of ADs among employed individuals and enhanced public discourse such as podcasts and television productions may encourage intergenerational conversations about end-of-life care and documentation in healthcare records.
Palliative care; Advance directives; Community outreach.