When we think about palliative care most of us know it is the care and support given to a person living with a life-limiting illness.
But we tend to overlook the effects the death of a loved one has on the living, even though each year more than 44,000 Australians develop chronic and debilitating mental health problems after the death of a family member or close friend.
This week is Palliative Care Week, and a ground-breaking study being conducted by the University of Technology Sydney and Calvary is using the COVID-19 crisis to focus on those left behind.
Professor Liz Lobb, Deputy Chair of Calvary Palliative and End of Life Care Research Institute (above), and leader of the study team, says in palliative care the patient and their family is a considered the unit of care, and national standards outline support for families after a death.
Prof Lobb says the death of a family member or close friend is one of the most stressful and personal life events that we will all experience, but that most people over time find ways of adapting to their loss, drawing on the support from family, friends and social networks.
However, Prof Lobb who is based at Calvary Health Care Kogarah, in Sydney’s south, says this process of bereavement was thrown into stark relief through COVID-19 as the pandemic came on the back of bushfires, floods and drought, so people have experienced a number of losses.
She says the pandemic disrupted every aspect of life, including how we die and how we grieve, and the study recognises that lock downs, social distancing, restricted hospital visits, the inability to attend funerals and travel disruptions created particular difficulties for those who were grieving.
“The main influence the pandemic has had on grieving is that people have not been able to have support,” she says. “There were so many limits on people’s ability to provide care, or to be able to have support after a death.
“And once a patient dies the family is no longer within the system, so to some extent that’s why we wanted to do this study, to get a sense of what happened to people who have not only had someone die in palliative care or residential aged care, but then also had to deal with the pandemic.”
But even then, lack of support is not the only issue.
“In Australia our situation was also a bit different as, thankfully, we did not have anywhere near the deaths they have had overseas, but that adds another layer as people are reluctant to talk about their grief.
“They feel their grief has been diminished by the larger tragedy that has been unfolding on our television screens every night.
“A risk factor for bereavement is the lack of reality over the death. If a death has occurred, for example, overseas, that makes it difficult for people to process the loss.
“And for people of different cultures there are rituals to be performed and when these can’t be done it adds to their grief.
“This is ongoing, and as many people have been prevented from travel within Australia but certainly overseas, they have not had the ability to travel and care for family members or be there when they die.”
Prof Lobb says the national project is being funded by the Medical Research Future Fund and will focus on people who have experienced a death from any cause from January 2020, and will continue to December 2021, with a final report due in April 2022. It involves 20 investigators nationwide from clinical and academic backgrounds.
There are four main stages to the study.
The first is a nationwide survey of more than 2000 bereaved people looking at their mental-health outcomes after the pandemic.
The second will conduct interviews to ask people about their personal experiences, such as whether the death happened in palliative care, an acute-care setting, or in residential aged care.
The study is also talking to multi-cultural health workers and Aboriginal health workers as representatives of their communities. Prof Lobb says Aboriginal communities managed the pandemic very well, but many people in communities have not been able to travel for funerals and rituals.
Lastly, the project aims to follow participants up over time, to see how they are coping down the track.
Prof Lobb says the findings will be disseminated during workshops with key mental health, palliative care, aged care and community psychology and primary care stakeholders to develop a National Bereavement Action Plan.
She says the action plan will set out key priority areas and measures to improve access to and knowledge of best-practice bereavement support during the current and any future pandemics. It will also provide guidance for education and training of mental health and palliative-care clinicians in all areas, build the evidence for effective clinical interventions, and identify preventative mental health and supportive bereavement recovery strategies.
“We probably will see a future pandemic, and health experts say this one will be with us for some time,” Prof Lobb says. “This study will generate a series of policy, practice, education and research recommendations to inform the actions required at to address the mental health needs of people bereaved during the current and any future pandemics.”