The families of those dying in residential aged care experienced intense levels of stress and suffering because of Covid-19 lockdowns, research from Melbourne confirms.
While the research acknowledges something reported all over the world, the authors believe it is the first Australian qualitative study of the issues.
Dr Paul Yates and Dr Emma Hack of Austin Health conducted interviews with 41 family members of people who died in nursing homes during lockdown. Their research was done with Austin Health Ethics Committee approval.
Those involved in the study were all contacted for interview about two weeks after the death.
Five themes emerged
Five themes emerged – Covid-19, communications and technology, death and dying, bereavement and grief, social supports and external systems.
“Residents reported distress and isolation from visitation restrictions and ‘lockdowns’ as routine contact with family and friends was lost,” the study said.
For example: “For two and a half months I had to speak to her outside the window… it was… terrible, I can’t even talk about it now… just to see the distress on her face,” said one interview subject.
“For two and a half months I had to speak to her outside the window… it was… terrible, I can’t even talk about it now… just to see the distress on her face.”
Many of those who died had relied heavily on routine contact from their loved ones, so restrictions of access resulted in a perception that there was a compromise in care.
Some interview subjects believed the aged care facility was a safer place for the dying person to be in, others believed it was worse than other options.
“There were concerns for dignity and a sense that residents deserved better. There were feelings of guilt and abandonment,” it said.
The attitude to technology was revealing: “While technology was largely endorsed as essential for contact, the effectiveness was limited by auditory, visual or cognitive impairment. Many struggled with the lack of physical touch or presence, particularly at end-of-life.”
No substitute for human contact
“This was no substitute for physical human presence and contact,” the authors noted.
“Anticipation of death was associated with emotional pain and longing to be with the loved one,” the study found.
This is not surprising to Good Grief! If this is a basic human response, then being with someone you love as they are dying is a basic human right.
The study found that when the bereavement was acknowledged by facility staff and expressions of compassion came from them, these were welcomed. Family were disappointed when these gestures were absent. (We note that this is an issue even when Covid-19 lockdowns are not occurring.)
Expressions of anxiety and disempowerment were common and some felt let-down by the government and events unfolding, with many expressing expectation of a more prepared and effective response.
There were reports of mixed advice from authorities and that information could be difficult to obtain. For example “I’ve rung police stations about whether I’m allowed to travel and they don’t even know the answer.”
“Humanitarian crises, including the COVID-19 pandemic, affirm the need for integrated palliative care,” the researchers concluded.
“Findings identify the personal cost of both the pandemic and visiting restrictions on residents and their broader supports and families. It is important when planning for pandemics that these individual burdens are fully considered when making plans aimed at the greater good of the community.
“The critical caring role of many next-of-kin and carers needs recognition, and if not permitted, will need to be compensated for by increased staffing during a pandemic, recognizing that this is not equivalent to visits from a loved one.”
Let’s hope these learnings will be utilised so as a society we can invest in maintaining the quality of end of life experiences while managing Covid-19 lockdowns, similar pandemics in the future and aged care in general. This vision needs to come at a governance and political level, much higher than the aged care facilities themselves.
To read a preliminary e-version of this study, go to: https://onlinelibrary.wiley.com/doi/epdf/10.1111/imj.15628
On the Good Grief! website, you can also read: Holding on to the spiritual death, despite Covid-19.
Are you experiencing grief? Go to I am experiencing grief on our Resource Hub. Articles have links through to services and resources to help you.
Do you want to understand Covid-19 better? Go to I want to understand Covid-19 and the risk of death from this better in our Resource Hub. Articles have links through to services and resources to help you.