Experiences of Volunteers and Patient Satisfaction in Home Based Palliative Care, Puducherry, South India—A Descriptive Qualitative Study

Context: Increasing burden of non-communicable diseases and ageing population has parallely increased the need for Palliative care. Unavailable, inaccessible, and inadequate palliative care services in our setting increased the need for volunteers. In Puducherry, palliative care programme was implemented through trained volunteers in 2015. Aims: To explore the experiences of volunteers who provide palliative care and also to get feedback on volunteering from the patients who received care. Settings and Design: A descriptive qualitative study was carried out at two Non-Governmental Organizations (NGO) working for palliative care in and around Puducherry. Methods and Material: Participants were selected purposively to include seven volunteers and eight patients to attain information saturation. The time period of this study was between September and October 2018. Analysis Used: Manual thematic analysis was done to identify codes, which were grouped to form categories and themes. Results: Factors that facilitated participants to take up the role of volunteers were witnessing the death of family members with unmet palliative care when required and experiences in organizations working for elderly and disabled children. Improvement in patients’ condition and patient satisfaction motivated them to continue, despite lack of resources and social support. Their perception was of having become bolder and empathetic by working as palliative care volunteers. Patients reported satisfaction with the provision of drugs and other materialistic support like clothes and sweets during festivals; however, their basic and financial needs remained unmet. Conclusion: The palliative care programme or the National programme for elderly should focus on components that would improve the quality of palliative care by reducing patients’ dissatisfaction. Support in terms of provision of drugs, financial help and nutrition is necessary to improve both the patients’ and volunteers’ satisfaction in palliative care services.

Live Well, Die Well: The Development of an Online, Arts-Based Palliative Care Programme in the Shadow of the COVID-19 Pandemic

The Covid-19 crisis led to an increase in the ‘total pain’ of many terminally ill patients who faced a reduction in support, due to the temporary closure of front-line palliative day therapy services. A hospice volunteer, I instigated an online day therapy programme for patients previously attending face-to-face day therapy. Participant feedback revealed the importance of providing a space for ongoing peer support for participants’ changing sense of identity, an issue for time-limited day therapy programmes. An exploration of key concepts associated with palliative care established the multiple connections between such changing identity and arts-based approaches to living well. This article charts how I used this understanding to develop an alternative, online arts-based support programme, Live well, die well. It explores the links between ongoing mutual support, arts-based activity and the reactions to a shifting identity in patients with a life-limiting illness.

Nursing home hospital transfers in the terminally ill: night shift nurses matter!

BackgroundFrench demographic projection expects an increasing number of older, dependent patients in the next few years. A large proportion of this population lives in nursing homes and their transfer to hospitals at the end of life is an ongoing issue.ObjectiveThis study explored the factors influencing the transfer of patients living in nursing homes to hospital at the end of life.DesignWe used a mixed-methods questionnaire developed by an expert group and assessing different characteristics of the nursing homes.ParticipantsAll the nursing homes in the Rhône-Alpes area (n=680) were surveyed.ResultsWe obtained 466 (68%) answers. We found that a palliative care programme was present in 336 (72%) nursing homes. The majority had a coordinating physician 428 (82%) and a mean number of 6 nurses for 83 beds, with 83 (18%) having a night shift nurse. There was a mean number of 19 deaths per nursing home during the recorded year. The main cause of death was dementia (41%), cancer-related death (13%). Death occurred mostly in the nursing home (14 74%). Night shift nurse attendance was significantly associated with the place of death: 27 deaths occurred in nursing homes with a night shift nurse versus 12 in those without one (p<0001).ConclusionsThe location of the death of frail elderly patients is a major health issue that needs to be addressed. Our results suggests that the presence of a night shift nurse decreases the number of emergency transfers and deaths in the hospital.

Serbia

Serbia is among the demographically older countries in the world, with 18% of the population aged above 65 years. One in two persons older than 65 years lives with an old spouse. The Serbian National Strategy on ageing identified poverty as a widespread companion of ageing, with a rising poverty index. In 2007, the first non-governmental organization, called ‘Alchajmer’, was established in Sremska Kamenica to support people with Alzheimer’s disease and their caregivers. In 2008, the first Centre for Memory Disorders and Dementia was established as part of the Neurology Clinic at the Clinical Centre of Serbia in Belgrade. A National Guide for Alzheimer’s disease was published in 2013. The Serbian health insurance scheme covers care costs for people with severe dementia through its support programme called Advanced Home Help, which includes provision of geriatric housekeepers from the palliative care programme, as well as modest financial support in accordance with the state’s financial capabilities. There are over 160,000 people with dementia in Serbia, comprising approximately 13% of the Serbian population aged above 65 years, of whom only 4% are prescribed appropriate pharmacological treatment.