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.
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.
Psychosocial; Economic effects; Caregivers; Terminally-ill; Patients.
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.
Arterial embolization is used as one of the palliative procedure in the control of bleeding. We have demonstrated this procedure to be effective in the control of the bleeding in various malignancies in our center. This is our first case report in a teenaged nasopharyngeal cancer patient who had exhausted all his treatment as he had progressive disease and recurrent bleeding episodes from the recurrent neck nodal mass. This was controlled well with arterial embolization with no significant side effects.
Nasopharyngeal cancer; Recurrent nodal bleeding; Embolization.
There are global challenges in relation to an increasingly older population, rising numbers of deaths and the resulting need for end-of-life care. It is imperative for Health and Social Care to examine where people die and forward plan.
To establish the place where people have died 2004-2018 and project future place of death care setting by 2040.
Materials and Methods
Population-based trend analysis of place of death for people that died in Northern Ireland (2004-2018 from Northern Ireland Statistics and Research Agency) and projections using linear modelling (2019-2040 projections by Office of National Statistics).
Deaths are projected to increase by 45.9%, from 15,922 in 2018 (of which 36.3% will be aged 85+ years) to 23,231 deaths in 2040 (39.8% aged 85+ years). Between 2004 and 2018, proportions of home and care home (defined as nursing and residential beds) deaths increased (24.5-27% and 16.3-19.4% respectively), while the proportion of hospital deaths declined (51.9-47.6%). If current trends continue, by 2040, deaths within the community (home and care home) will account for between 46.7-55.2% of all deaths. However, if care home capacity is limited at current levels (as of 2018), hospital deaths are projected to account for the largest proportion of deaths by 2040 (51.7%).
Death at an increasing age has implications for end-of-life care provision. This study demonstrates an increasing need for end-of-life care over the next 20-years, particularly within community settings. Projections highlight the need for comprehensive planning to ensure service provision within the community meets the needs of the population.
Trend analysis; Place of death; Community palliative care.
Documentation of advance care planning (ACP) in the electronic health record (EHR) is a quality measure promoted by both the Centers for Medicare and Medicaid Services (CMS) and the Department of Veterans Affairs (VA). There is no best practice model for promotion of ACP in primary care. Clinic prompts reminders from staff, and provision of forms and handouts modestly increase ACP completion. Targeted advance care planning and goals of care discussions for high-risk high-need older patients may help promote ACP in primary care.
High-risk, high-need geriatric patients were identified by the clinical assessment of need (CAN) risk calculator for a telehealth intervention by an advanced practice nurse trained in palliative care and embedded in the geriatric patient-aligned care team (Geri-PACT) and provided telehealth outreach for ACP and goals of care discussions.
At baseline the Geri-PACT panel had a 54% prevalence of ACP in the EHR. Completion of a life-sustaining treatment note (LST) increased from 39% to 74% following the telehealth intervention producing a total of 89% ACP documents in the EHR. Additionally, 9% of patients received goals of care discussions and a need for additional home and community-based services was identified for 12% of patients contacted. Outreach to three practices in an established physician referral and patient visit network which included 10 providers indicated that primary care providers desired to approach their own patients for ACP. These providers were educated and provided tools and information about CMS and VA ACP quality improvement directives.
A focused telehealth intervention performed by a nurse trained in palliative care and embedded in a geriatric patient-centered medical home was able to significantly increase ACP documentation in the EHR for elderly patients in the practice. Primary care providers place core importance on the value of the patient-clinician relationship and prefer to approach their own patients rather than rely on consultation for ACP. Education for primary care providers and provision of resources to perform ACP and goals of care discussions for their patients may be a worthwhile strategy to improve ACP completion and documentation in the EHR.
Advance directives; Primary care; Telehealth.
This paper examines the link between non-pharmacological care tools carried out by volunteers in a hospice and the development of the perception of dignity in people with end-of-life terminal illnesses.
Materials and Methods
We interviewed volunteers from a hospice institution in Argentina, who carried out non-pharmacological care activities aimed at people at the end-of-life. The results of these interviews were analyzed with the Atlas Ti software, using the grounded theory as a form of qualitative codification.
From the codification of the interviews, we obtained the following analysis categories: 1. Caring after the caregivers (mentioned 14 times), 2. Care taking into account the temporal needs of others (mentioned 7 times), 3. Active listening (mentioned 11 times), 4. Environmental aesthetic factors (mentioned 18 times) and 5. Enhancement of autonomy and selfhood (mentioned 22 times).
We examined ways in which volunteers associated with the care of people with end-of-life terminal illnesses understand their work from the explanation of the non-pharmacological care activities developed within the institution, as well as the link that these have with the different dimensions of the human sense.
The non-pharmacological care tools, as they alleviate existential/spiritual suffering, impact positively in the possibility of a terminal person’s capacity to perceive herself/himself as worthy.
Hospice; Non-pharmacological care; Dignity.
Executive Director Middle East Cancer Consortium P.O. Box 7495 Haifa 31074, Israel
Associate Professor of Nursing Department of Nursing Morehead State University150 University Blvd Morehead, KY 40351, USA
Professor Yong Loo Lin School of Medicine National University of SingaporeLevel 2, Clinical Research Centre, Block MD11 10 Medical Drive 117597 Singapore
Palliative Care Physician Aga Khan University P.O. Box 4614-00200, Nairobi, Kenya