The heart-breaking and difficult stories of deaths of loved ones in hospital during lockdown have been shared with researchers.
The accounts were gathered so that more could be done to encourage hospitals to adopt a range of measures to improve the care provided in a pandemic to whānau and hospitalised patients who are dying.
Photo: RNZ / Samuel Rillstone
Listen to the full interview here
Dr Sinéad Donnelly, from Otago University's Department of Medicine and a palliative care specialist at Wellington Hospital, led the research.
In collaboration with the Whānau Care team at Wellington Hospital, they spoke to affected families, realising that the impact on Māori, in particular, would be major.
"We were still in lockdown levels when we did the research, so we phoned the families and interviewed them and asked them what was their experience of the death of their relative while they were in hospital and they very readily told their stories. That involved six Māori families," Dr Donnelly says.
"They talked about the complexity of their grief or the compounding of their grief by the fact that they couldn't be there."
The families understood the fear in society because no vaccine was available in New Zealand at the time and the news showed people abroad dying in ICU, Dr Donnelly says.
"They understood the need for the restrictive visitor's policy that during level nobody could visit, and during level three one person could visit but at the same time, they were honest about the impact that had on their grief."
The families were heartbroken and described the long waits for Covid-19 test results at the time, which were required for visitation.
"There was one family that had to wait almost 12 hours for the result of their Covid test," Dr Donnelly says.
"But we have to remember this was way back, 20 months ago, so it was nobody's fault.
"But as a result that family couldn't visit until their relative was told to be Covid-negative, in fact, the person was Covid-negative, then the family was contacted 'you can come in now', and within 15 minutes their relative died and they didn't get in on time."
Since this study, there have been others in Italy and the United States who found this type of grief was the same as the type of grief experienced by families after a suicide or homicide of a loved one, she says.
"So you could say it's a public health issue, looking after these families, these whānau after such a death.
"The other thing is what they needed most was to know that their relative was being cared for if they couldn't be there, to know that someone was actually looking after them.
"So that would mean that, for example, you could assign a team of social workers or palliative care people to contact these families, as the relative is dying, regularly to keep them updated, and that should be put in a pandemic plan.
"We need to plan and prioritise care of the dying patient and their whānau and that can be done in advance."
A complex and protracted grief adds to people's physical and mental ill health later on, Dr Donnelly says.
"[In] Italy, one example is they set up a group of psychologists within the hospital ... they phoned the family after the death and they phoned a week later and then a few weeks later. So, it was providing ongoing support and checking the family was doing okay. So, they're the kind of things I'm suggesting.
"The palliative care teams, which are in the hospitals in New Zealand, they are ideally placed to assist with that planning for the next pandemic or surge and also provide that support."
Whānau Care realised the need for prioritising this type of assistance - especially considering tikanga around death and dying is that the person is accompanied - but Dr Donnelly says the urgency of the alert level restrictions meant it had not taken off as well as they had hoped.
Since the study was published on 1 April, she says there have been responses from people in New Zealand and abroad, relating to the experiences of those in research and calling for better processes in the future.
"Having presented it to Wellington Hospital management, they already introduced easier access for relatives, access cards through the front door and a greater understanding of the importance of as many family members being present when someone is dying."