Her greatest fear was dying alone — two days after she caught coronavirus, she did
Nursing professor says everyone should have the chance to say a deathbed goodbye
Jennifer Patrick was terrified of dying alone.
The 65-year-old was diagnosed with pulmonary fibrosis nearly two years ago. She relied on progressively higher and higher concentrations of oxygen and a few months ago was moved to a Calgary nursing home.
Since the diagnosis, Britt Patrick said her mom just kept repeating her fear — "I don't want to die alone."
But two days after she contracted COVID-19 that's exactly what happened.
On April 19, the 65-year-old from Airdrie, Alta., was having a panic attack, gasping for air. She hadn't seen a friend or family member in days.
It was her husband's birthday. They'd spent the last 41 years together but hadn't seen each other since the Calgary home, Extendicare Hillcrest, was locked down to visitors. Her daughter and grandchildren were two provinces away.
Her nurse, who was sitting by her bedside, left the room to get morphine to ease her panicked gasps for air. When the nurse returned, Jennifer Patrick was gone.
"It was very, very surreal," Britt Patrick said.
"I feel like maybe my dad should have been allowed in with proper protection just to say goodbye."
No chance to say goodbye
Patrick said her mom's COVID-19 diagnosis didn't come as a shock. The Winnipeg resident knew Calgary was experiencing high numbers of COVID-19 cases, and said she had an ominous feeling, knowing her mom already had a serious respiratory illness.
But the speed of her mom's death, without a chance to say goodbye, left her reeling.
She doesn't even remember what they talked about during their last phone call — the oxygen deprivation had increasingly made talking on the phone difficult for her mom.
"That's frustrating and that's hard," she said.
"I know I ended up missing a phone call with her. I had been trying to get ahold of her for quite a while and I finally got a phone call back. I was just getting out the door and I didn't have time to answer it and I wish I'd taken that two minutes to take that conversation."
She also doesn't know what to tell her three children.
"They're struggling with it, they're asking, 'When can we go out there? Are we going to the funeral?' They're asking very obvious questions for children that I can't answer and that's frustrating, to not be able to let them know when we can visit Grampy, when we can do these things," she said.
Dying alone all too common during pandemic
While Patrick may feel alone in her grief, tens of thousands of families globally are facing the same harsh reality — forced to say goodbye through a video call or being deprived of even that small connection, due to precautions in place or personal safety decisions made to avoid spreading the infectious disease.
University of Alberta nursing professor Donna Wilson studies end-of-life care, bereavement and what it means to have a good death.
She said while initially many of us were taken by surprise by the pandemic, now that it has been the reality for months, it's time to find better ways to let people say goodbye.
"There has to be a way around this," Wilson said.
If a family member thinks it wasn't a good death ... they may have seriously complicated grief.- Donna Wilson, University of Alberta nursing professor
Wilson said the deathbed goodbye — where loved ones gather around a dying person's bedside to make amends, and express sentiments that may have previously gone unsaid — is a centuries-old custom for a reason.
"People don't want to be alone, they want to be surrounded by their family members, the people that really mean something to them … it's really important because people have the opportunity to say something to the dying person that maybe they never said before."
She said international research has shown that a good death, which is somewhat expected, largely free from suffering, and in accordance with a patient or their family's wishes, is vital to the grieving process for those left behind.
"If the family member thinks it wasn't a good death … they grieve harder and longer and they may never get over the death, they may have seriously complicated grief," she said.
That's the situation Britt Patrick finds herself in.
"You have people who are passing away afraid and alone, why can't we at least set something up to allow people to say goodbye safely?" she said.
Michael Bittante, the regional director for Extendicare, said while Jennifer Patrick's family was contacted and informed of her condition, end-of-life visits are not always feasible.
"We continue to provide end-of-life visitation with families when possible, using personal protective equipment and infection control measures. Unfortunately, this is not always possible for a number of reasons, including the progression of a resident's illness," he said.
CBC News reached out to Extendicare to clarify the timeline as to when residents are allowed end-of-life visitors, and the company reiterated that it is following provincial directives.
Donna Wilson said it's important for the government or health officials to step in, as they did to limit visitors to nursing homes, to ensure end-of-life visits happen.
"We're looking at a lot of people that are going to be really severely damaged if they're blocked from the deathbed," she said.
Wilson suggested strategies like bringing in retired nurses to facilitate visits and assist visitors with donning protective equipment, or arranging for visits to be held in private rooms near the entrances of buildings or even in ambulances, that can be cleaned after each visit.
"If you can get a nurse in and out of a hospital safely … you can bring a relative in and out safely."
Some end-of-life policies were applied too strictly
Dr. Deena Hinshaw, Alberta's chief medical officer of health, said Wednesday that she knows the protective measures in place at long-term care facilities are causing many residents to feel increasingly isolated and said some end-of-life visitation policies were being applied more strictly than intended.
"There have been some interpretations where some believed the intention of the order was [to only allow visits] in the last few hours of life ... it's very difficult to arrange for visits in that very narrow window," she said.
"We expect that individuals who are dying must have the opportunity to have their loved ones at their side."
She said up to two visitors can be allowed to see those estimated to be two weeks away from death, as long as they maintain two metres of physical distance.
While that update doesn't change anything for Britt Patrick, she's learned one thing in her grief she wants to share.
"Just take every chance to connect with your loved ones."
There were 503 cases of COVID-19 in nursing homes across Alberta as of Wednesday.
In the two weeks since an outbreak was declared at Jennifer Patrick's nursing home, eight residents have died, and 19 residents and 10 staff members have contracted COVID-19.
With files from Jennifer Lee, CBC Winnipeg