The COVID-19 pandemic continues to influence how people grieve
A blog post written by Liz Lobb, Professor of Palliative Care, Calvary Health Care Kogarah
The COVID-19 pandemic continues to disrupt every aspect of life, including how we provide palliative care, how people die, and how their family and friends grieve.
We wonder when life will get back to “normal”, but for people who have experienced a death during COVID-19, there is no back to normal.
In Australia, the pandemic came after catastrophic prolonged drought, bushfires, and floods. Deaths during COVID-19 have occurred against a backdrop of many other losses such as loss of jobs, routine, freedom to travel, play sport, be involved in hobbies, visit friends, and loss of future plans. This means that many people are living in a state of chronic grief as they manage multiple losses.
With the ongoing COVID-19 pandemic strict hospital, palliative care unit, and nursing home visitation restrictions remain, with many services allowing one nominated family member visitation rights just prior to the death. There have also been cases in nursing homes or in acute services where no family member could be present. The added stress of choosing which family member should be there at the end of life, or no one being present at all can lead to further trauma and complicated grief.
Patients and their carers who opt for a home death as a means of limiting the impact of distancing restrictions can lack the usual levels of professional and community supports, and carers can be unprepared for the experience of the death.
Families are concerned about visiting doctors or hospitals in case they catch the virus and bring it home to vulnerable family members. This limited contact has left many people unable to have conversations with the palliative care team about the likely prognosis and to make preparations. And lack of preparation for death is a known risk factor for prolonged grief disorder.
Routines and rituals such as wakes and funerals that give comfort after a death, are restricted by public health laws. In addition to not being able to visit loved ones in hospitals or nursing homes, restrictions on travel mean they cannot attend the funeral when their loved one died or to travel interstate or overseas if the death occurred there.
Grief itself is a risk factor for many physical health problems and bereavement during the COVID-19 pandemic, whether attributable to the virus or not, could present additional significant risk factors for poor mental health due to public health measures.
Little is known about the effect that this pandemic has had on people’s mental health or what support they need if they had a family member or a close friend die.
I am leading a research study at the University of Technology Sydney to look at the experiences and support needs of people bereaved from any cause during the COVID-19 pandemic.
Participation in the study will consist of a 20-minute online survey that asks about individual experiences of bereavement, the kind of support people have received and wanted, and what has been most helpful and least helpful. There is also an opportunity to take part in an interview and do other surveys to see how mental health needs may have changed over time.
If you would like to share your experience, you can access the survey here: https://redcap.link/griefduringcovid19
If you would like a paper copy of the survey, please email bereavementincovid19@uts.edu.au
For more information about the study, visit https://www.lossandgriefduringcovid19.com
Each year at least 44,000 Australians will develop chronic and debilitating mental health impairments in the form of prolonged grief disorder (PGD) following the death of a family member or close friend. Annually, 160,000 Australians die, and it is estimated that 4 persons are affected by every death that occurs. This equates to 44,000 new cases of PGD in Australia annually. Understanding the experiences and needs of these people will help us determine the optimal provision of health services and inform policy to help plan for future pandemics and better support the needs of bereaved Australians.
Liz Lobb is Professor of Palliative Care (Allied Health) at Calvary Health Care Kogarah
Deputy Chair of the Calvary Palliative and End of Life Care Research Institute
Adjunct Professor in the School of Medicine at the University of Notre Dame, Sydney
Adjunct Professor the Faculty of Health at the University of Technology, Sydney