Shaping palliative care policy using a human rights-based approach: Examining the experiences of people living in nursing homes, their families, and staff during the COVID-19 pandemic.
COVID-19, palliative care, pandemic policy development, nursing home settings, residents, family carers, healthcare professionals
Within Ireland nursing homes are operated by a mixture of private and voluntary bodies, and the Health Service Executive (HSE). All nursing homes must satisfy regulations and national standards set by The Health Information and Quality Authority (HIQA) in relation to palliative care. These place responsibility on health and social care professionals to deliver a certain standard of care, while also establishing expectations around care among nursing home residents and their families.
In Ireland, the first wave of the COVID-19 pandemic came in March 2020. At this time nursing homes were forced to rapidly implement new protocols set out by the National Public Health Emergency Team (NPHET) to prevent the potential spread of infection and safeguard nursing home residents, their families, and staff. Such protocols included restricted family visiting measures, isolating residents from one another, reduced or cancellation of day-to-day social activities and much more.
The All Ireland Institute of Hospice and Palliative Care (AIIHPC) wanted to give a voice to nursing home residents, their families and staff in relation to their experience and expectations of palliative care during COVID-19. AIIHPC wanted to ensure that any changes to palliative care policy due to COVID-19 would be informed and shaped by the needs and perspectives of the rights-holder. The rights-holder in this case being the nursing home residents, their families, and staff. The Institute received funding support from the Irish Human Rights and Equality Commission (IHREC) through their grant scheme in 2020 to carry out research in this area.
This research will encourage policy makers and service providers to critically reflect and ensure that the needs and experiences of people living in nursing homes, their families and staff are central to future planning.
This research will examine rights-holder experiences of palliative care, people living in nursing homes, family carers and nursing home staff. It will examine whether existing policies are sufficiently robust to protect and promote human rights during the pandemic.
This study involves researchers with expertise in law and health, rights-holders with experience of palliative care in nursing homes and key stakeholders with expertise in providing services (consortium members listed below).
We will do an initial legal analysis of existing palliative care policy within nursing homes. This analysis will inform the development of a survey that will be completed by rights holders. We will then analyse the information from the survey to identify potential needs and/or gaps in palliative care policy based on a human rights approach.
We will start collecting data from health and social care professionals in August 2021, and following this with nursing home residents and families.
In January 2022, we will hold a key stakeholder event involving rights-holders, representatives from our consortium members as listed below, HIQA, Department of Health, and public and patient organisations. We will use this event to review and discuss the results from the research. This will assist in defining areas of concern, implications for policy, and support the development of pandemic policy.
Presentation by the research team of report: Shaping Palliative Care Policy Using a Human Rights-based Approach (52 minutes)
Infographic of report finding: ‘Shaping Palliative Care Policy Using a Human Rights-based Approach‘
The national survey study captured the experiences of nursing home residents, family members, and staff in Ireland during the COVID-19 pandemic. Overall, survey responses from residents, family members and staff were largely positive, with all domains scoring above 50% except residents’ ability to choose when to get up and go to bed (41.5%). The highest-rated item was that the nursing home was comfortable and well-kept (89.1%). Findings also indicated that residents felt safe and supported, and staff made strong efforts to maintain social connections despite challenging conditions, although families highlighted communication gaps and limited access to internet and digital devices. The study emphasises the importance of embedding a human rights-based, person-centred approach in public health guidance and nursing home policy development.
October 2020-January 2022
Dr John Lombard, Lecturer in Law, School of Law, University of Limerick
Dr Owen Doody, Senior Lecturer, Department of Nursing and Midwifery, University of Limerick and Marie McGeehan, Psychology, University of Limerick.
Dr Mary Rabbitte, Programme Manager Research, All Ireland Institute of Hospice and Palliative Care (AIIHPC) and Dr Tara Delamere, Project Manager, AIIHPC
Consortium members
This project is funded by the Irish Human Rights and Equality Commission with support from the All Ireland Institute of Hospice and Palliative Care (AIIHPC).
Email: Dr Mary Rabbitte, AIIHPC: mrabbitte@aiihpc.org or Dr Tara Delamere, AIIPHC: tdelamere@aiihpc.org
