Families of people who died in hospital during New Zealand's first COVID-19 lockdown have given "poignant and heartbreaking" accounts of the experiences they had, including access to visiting their loved ones or them dying alone.
A study in the New Zealand Medical Journal looked at patients who died at Wellington Hospital during alert levels 3 and 4 from March 22 to April 27, 2020 and interviewed their families about bereavement experiences during this time.
This hospital had a restricted visitors policy that meant no visitors were allowed under level 4 except on compassionate grounds determined by a senior doctor and ward clinical nurse manager. Under level 3, one nominated visitor from the patient's bubble was allowed, provided they had no COVID-19 contacts or symptoms.
During levels 3 and 4 in the Capital and Coast District Health Board, 70 patients died in Wellington Hospital. Of these, 20 died under General Medicine, the largest group of patients under a particular service. Six patients identifying as Māori also died in this period and their whānau were also invited to participate in the study.
Next of kin for these 26 patients were contacted and they were asked to describe their experiences of their relatives dying in hospital. Two families didn't want to participate and two families couldn't be contacted.
The research split the participants' answers into negative and positive experiences they had while their family member was in hospital. The negatives included the patient being alone when they died, communication, turnaround time for a COVID-19 test result, door screening process for visitors, and access to visiting.
Families were devastated that their loved ones were often alone when they died.
"I just feel guilty, I just feel kind of sad that she was alone, that could have been done differently," one person said.
Another told the researchers that they planned for a family member to stay with their dad, but then she was asked to leave.
"So that was really hard, just really hard. He passed only hours after she left. If one of us could have been with him at the end that would have meant everything to us."
Others found the access to visit their dying relatives difficult and the rules were very strict.
"It's so very, very raw to us because I had a great relationship with my mother and she was my best friend. Just putting yourself in our perspective as a family, it was very difficult. Definitely, our grieving was worse - not being able to be in there with her and actually spend the time was actually the hardest," one person said.
Another person, who couldn't be in the hospital when their dad died and instead had to watch over Zoom, said it was really hard to not be there in person.
"One of the nurses was holding dad's hand and you're just watching, you're going: 'God, I wish I could get there'. So it was probably one of the most difficult things I've had to go through in my life. I think it's always difficult saying goodbye to a parent, but not being there, that's just really hard," they said.
Although there were some negative experiences described by families, there were also some positives, including that the hospital allowed more access to visits than a residential care facility.
"It was a blessing in disguise for us [to be admitted to hospital[ because it was the only way we could physically see him," one person said.
"Level 4 gave us time to grieve as an immediate family. We didn't have to worry about funeral arrangements, just be here for each other and the icing on the cake was just for mum to see him."
Another person said their family member was in a rest home and the lockdown blocked them from going to see him.
"It was fortunate he was in the hospital and we were allowed to have the day with him before he passed. So from my end, I'm at peace that I had a day plus with my dad before he passed."
One family, who is Māori, said it was helpful for their family to have two Māori nurses who knew the cultural protocols.
"They were very caring and they tried their utmost. It was two Māori ladies, they just knew the protocol for us. It really was [a help] because they understood where we were coming from," they said.
The researchers for this study said their findings mirror those found overseas.
"The needs that emerged for family members in a similar Italian study included the need for information, the need for reassurance, to be listened to and supported, to preserve a relationship with their loved ones, and the need to be supported in the grieving process," they said.
They also say that while palliative care has gotten a lot of attention during the pandemic, it hasn't been enough to prevent patients from dying alone or to allow relatives to say goodbye.
"We recommend that specific plans related to care of patients dying from COVID-19 and non-COVID-19 illnesses, care of the deceased and care of their whānau throughout the process - including bereavement - be established and prioritised in hospital pandemic policy," they say.
"Plans should include the provision of access cards for whānau of dying patients; daily telephone/Zoom communication with an update by the doctor for whānau; e-mailing of photos of doctors/nurses and the room to whānau; allowing two people rather than one at the bedside; establishing a bereavement whānau coordinator to keep in touch with whānau of dying patients; and follow-up telephone calls to whānau after the death.
"Tikanga around dying and death for Māori whānau must be known, understood and accommodated."
They add that cutting back on support structures for the dying and bereaved will cause "significant distress and harm".
"Reflecting on experiences of whānau will enable us to create wiser, more compassionate policies now for future pandemic situations."
