The experience of a palliative care death during the COVID-19 pandemic
A blog post written by Dr. Serra E Ivynian
The COVID-19 pandemic has changed the way we live and the way we die. With the introduction of strict public health safety measures since March 2020, palliative care services have had to adapt and make changes to usual practice.
I am the project manager on the National Bereavement during COVID-19 study, asking bereaved Australians how public health restrictions impacted the end-of-life and grief experience. This study is led by the University of Technology Sydney and brings together a team of researchers and clinicians from across Australia. Through an online survey, we investigate the mental health of Australians who have been bereaved from any cause during the COVID-19 pandemic. The aim is to identify support use and needs, and the impact of various public health measures on the end-of-life and death experience, funerals, travel, family togetherness, and social isolation and loneliness. Semi-structured interviews were also conducted with bereaved Australians to gain an in-depth understanding of these experiences.
We have had 1543 people complete our survey, and 571 had involvement with palliative care. Of these 571, most were from NSW (40%) and VIC (31%) and had lost a parent (47%) or partner (20%). The most common cause of death were cancer (57%) or other chronic health condition (24%).
It is reasonable to assume that during the pandemic, the place of death largely shaped the end-of-life experience. For example, friends and family of people who received palliative care in an inpatient setting may have had limited contact with the person in the lead up to the death due to strict hospital visitation rules. These rules were often stricter in nursing homes where, in some cases, no visitors were allowed at all. This may contrast with people who received palliative care in the community where family members were often present and could easily be kept informed about care and spend the last days and moments of life together. Using the survey data, we are able to ask and answer these questions of whether there was in fact a difference in how the public health measures affected families of people who died in different palliative care settings.
We can also deduce whether there was a difference in how involved people felt in care decisions, how well-supported people felt, how emotionally and practically prepared people felt, and if people received information about support services before and after the death across the various settings people were receiving palliative care - whether the death occurred in the community, inpatient palliative care, nursing home, or non-palliative acute setting.
The national study also investigates how restrictions due to the pandemic may have affected the way palliative care services have traditionally provided care, and how this compares to the experience of people whose loved one died in a non-palliative inpatient setting during the pandemic. These results will tell us if families of palliative patients who died in hospital were affected more than those who received community palliative care and identify any areas of improvement to facilitate a good death, and provide optimal support to grieving families.
To find out more about the national COVID-19 bereavement study, visit https://www.lossandgriefduringcovid19.com/
Funding acknowledgement: Medical Research Futures Fund Mental Health & Wellness
Dr. Serra E Ivynian
Research Fellow
University of Technology Sydney