An app, a few volunteers, and buy-in from doctors can make the frontlines a kinder place for patients, staff, and families.
When the elevator bell dinged in the foyer of a private hospital in Athlone, Cape Town, the doors slid open, but the carriage was empty.
Leanne Lakay, 37, was puzzled. She was expecting to see a nurse or doctor in the lift.
Lakay had come to the hospital to fetch her mother, Valerie’s, belongings. The 65-year-old had passed away from COVID-19 at the hospital a few days earlier, in June. The disease, caused by SARS-CoV-2, has claimed more than 8 000 lives in South Africa.
Leanne pushed her mom into the private facility in a wheelchair after she collapsed at home and couldn’t get up again. Her mom had diabetes — the most common underlying condition that leads to COVID-related deaths in the Western Cape — and her legs often caused her pain, but this was far worse than usual, and she was feverish.
“Please don’t leave me here,” Valerie pleaded, but her daughter explained that the doctors could help her much better than the family could at home.
Once Valerie was admitted, she stopped answering her phone and the hospital wasn’t giving Leanne any information.
Five days later the doctor called to say that her mother had died.
Now, she’s looking at a bulging yellow plastic bag on the floor in the middle of the lift. Inside, she assumed, were her mother’s belongings.
Leanne felt numb.
“I just had to take it and go.”
Fighting COVID-19 after losing someone – heartbroken and breathless
Four hours after Leanne Lakay’s mother passed away, she rushed her father, Christian, 64, to Life Vincent Pallotti Hospital in Pinelands with an extremely high fever and breathlessness, both telltale signs of COVID-19.
That facility is less than 10 kilometres from the hospital where Valerie was treated, but there was no way the Lakays were going back there.
Staff there refused to tell Lakay which ward her mother was in or how she was doing, saying it was irrelevant information since she couldn’t visit anyway. The doctors ignored her calls and nurses chased her away when she showed up at the hospital to get answers.
Two days before Valerie had passed away, Leanne got a one-line email from a doctor that read: “Your mother tested positive for COVID-19. She’s in renal failure.”
Her mother was likely lying sedated, on a ventilator, unable to speak to anyone, but Lakay had no idea at the time.
Back at Life Vincent Pallotti Hospital, in Leanne Lakay’s car outside the facility’s emergency entrance, her father Christan is in the back seat, weeping. Just like Leanne explained to her mother a week earlier, she tells her father that the doctors would be able to care for him better than she could.
But all he wants now is to be around family.
Leanne explains: “My father was heartbroken about losing my mother, and his blood pressure always goes sky high when he cries — the doctors really struggled to keep him calm.”
A plan to soothe COVID-19 patients in ICU
Dealing with the death of a loved one will always be traumatising, but it’s much more difficult if you don’t have the opportunity to say goodbye, says social worker and bereavement expert Nelia Drenth. She was speaking on a webinar hosted by The Association of Palliative Care Practitioners of South Africa in July.
And the coronavirus pandemic has changed a lot about the way hospital staff can interact with their patients.
Around the world, health workers have voiced their concerns about the stress of being separated from patients and how personal protective equipment and a fear of infection has affected their bedside manner negatively.
For starters, touch is no longer part of care, since studies show SARS-CoV-2 mostly spreads through droplets expelled when people speak or cough, and that can be transferred from person to person through close contact. Some research suggests parts of these droplets might hang around in the air, but it’s unclear whether these smaller drops contain enough of the virus to infect people.
Both health workers and patients are also masked up, explains Irene Boeddinghaus, an oncologist at the Vincent Pallotti Oncology Centre: “Health workers wear visors to protect themselves that can become misty from frequent cleaning. That’s a huge barrier to communication that we don’t usually have.”
What’s more, doctors don’t meet their patients’ families since they’re not allowed to visit the hospital. And, COVID patients are treated by teams of physicians that change all the time.
Usually, when patients come to hospital, say for a hip replacement, the orthopaedic surgeon will sit down and explain the treatment plan to you and your next of kin, Boeddinghaus says. After your operation that doctor will phone with an update.
“In a pandemic, this is not possible because teams of doctors rotate. You don’t get to keep one doctor.”
Equally, next of kin often don’t know who is in charge of their loved one’s care.
Patients, on the other hand, are often left in isolated rooms alone for long periods, since health workers mostly try to minimise their time in COVID wards to limit exposure to the virus.
Studies have shown this induces fear, anxiety, depression and hasty mood changes among patients, making it extremely stressful to cope with their illness.
“[The lack of contact of patients with their families and doctors] is a total disaster as far as grief counselling goes, as well as general mental health for patients,” Boeddinghaus says.
Family members who can’t say their goodbyes when someone dies can struggle with the grieving process. So too if they think the person they lost died unexpectedly, or if they passed away in pain, or in an intensive care unit and not at home, research published in the Journal of Aging and Social Policy in April found.
In response to this, staff at Vincent Pallotti Hospital, where Christian Lakay was admitted, have come up with a plan that makes hospital care for people sick with COVID-19 easier on families, staff, and patients.
In April, they devised a way to keep track of what’s happening with each patient as they move through different phases of treatment. With the help of an IT developer and the online spreadsheet application called Airtable, doctors at Vincent Pallotti Hospital now capture information about their patients’ condition on their phones.
Each coronavirus patient’s name has a drop-down menu from which health workers can select preset updates like deteriorating, improving, discharged or deceased, explains Boeddinghaus.
Similar efforts have been made in hospitals in Singapore to make treatment easier on patients, such as Singapore General Hospital, a flagship state hospital for that country’s health system. There, nurses set up tablets next to hospital beds in its isolation wards.
The tablets are loaded with patients’ treatment schedule for the day or whether they’re due for any blood tests for example, according to a study published in the World Journal of Clinical Cases in May.
Patients can also click on simple requests such as “water”, “pillow”, and “change meal”, which reflects on nurses’ tablets too.
At Vincent Pallotti, the information that doctors enter on the app is shared with the counsellor assigned to that patient and their family, who then gets in touch with a daily update. Ideally, the same counsellor will stick with a family right through their loved one’s treatment so they can get to know each other in the absence of one designated doctor.
The updates from doctors to counsellors take physicians about 30 seconds to do, since they seldom have to do more than click on a preloaded update, Boeddinghaus says.
At Singapore General Hospital, patients can also ask non-urgent requests on their tablets, or ask to be put in touch with their families. Nurses there get in touch with patients and their families daily with an update.
Vincent Pallotti’s counsellors are a group of 16 trained volunteers, and Boeddinghaus is one of them.
They’ve split up into two teams – internal and external, depending on their own risk of severe COVID symptoms as a result of underlying health conditions.
Messages from doctors will update on the counsellors’ end of the database immediately, after which they jump into action to communicate with families, and patients. They might take photographs of the patients to send along to family members, or make a call to tell them about the antibiotic their loved one is being treated with, for example.
Boeddhinghaus explains: “A photograph of somebody in the COVID ward is extremely helpful because the family can start to picture how their treatment is going.
“It doesn’t feel so far away.”
How to build new systems in a crisis
How did Irene Boeddinghaus and her team get a hospital full of overwhelmed and overworked healthcare staff to adopt another new habit while the Western Cape’s COVID-19 cases were surging?
It took some convincing, Boeddinghaus says.
Usually, doctors would write updates on paper which is kept in a folder outside a patient’s door so that the next doctor can see their feedback.
To help them ease into the new app, the counselling team made sure everybody’s questions about the app were answered.
“If things get very busy in the ICU, doctors can also send the information through in a voice note for counsellors to log,” Boeddinghaus explains. “An important part of the volunteer team is a dedicated co-ordinator who makes sure each patient is linked to a counsellor and that the database is operating smoothly.”
In April, doctors at the Zuckerberg San Francisco General Hospital and Trauma Centre in the United States set up an iPad system to keep patients, families and counsellors in touch.
They designed workflows for staff to use when they request sessions with the counselling teams, to make sure health workers understand how and when to use this service – and how to keep track of billing for counsellors. Families were trained to use the teleconferencing technology too, write authors for the Journal of Pain and Symptom Management.
One hiccup with this plan, however, was the availability of strong internet connection to support a Zoom call, the researchers point out.
Supporting bereaved people well pays off in the long run, says Joan Marston, the former head of the International Children’s Palliative Care Network. “That way you can make sure people are able to work and look after their families properly, saving the economy and health service money.”
The penny really dropped for health workers at Vincent Pallotti when they saw how effective the system was in bringing some solace to families. The team also realised the value this system held for doctors when they began sending thank you notes and well wishes from families through to the physicians and nurses.
Boeddinghaus says: “COVID is isolating as much for the doctors as for the families.”
There was one patient in particular who moved the needle.
“Mrs Sasha, an older patient, was incredibly sick, and things did not look good, but she pulled through and was taken off the ventilator,” Boeddinghaus explains.
After she spoke with her family on a video call, Boeddinghaus, who was her counsellor, took a photo of the beaming patient and sent it to the staff who’d treated her in the intensive care unit.
There had been three deaths in the ICU that day.
“When they saw her doing so well, they just about wept.”
Seeing a sick loved one is terrible, not seeing them at all is worse
For Leanne Lakay, the daily calls with her father while he was being treated for COVID-19 made a world of difference, but they weren’t always easy.
“You know, his body was panting with the mask on and he couldn’t talk and tears were running down his face. It’s terrible.”
But Leanne says the alternative – seeing nothing at all – was far worse.
One day, the nurses let Leanne and her brother speak to their dad through the window of the ward he was in. Despite Christian’s blindness, it seemed to comfort him that his children were nearby.
When counsellors know how patients are doing, they can also begin to prepare families and patients for the worst in a gentle way and make sure they’ve got an opportunity to say goodbye on a video call.
The last time Leanne saw her dad, he was still heartbroken. His responses were short:
Christian passed away of COVID-related double pneumonia shortly after they spoke, just six days after his wife had died.
Boeddinghaus remembers Lakay well. “He looked like he should have done well, but he didn’t, he deteriorated despite our best efforts. Sometimes I wonder if he didn’t die of a broken heart.”
Leanne says she feels far more at peace with his death than with her mother’s and she’s sure it’s the conversations she had with him before his death that’s helped her accept her dad is gone.
After Christian died, his body ended up at the wrong undertaker which meant Leanne had the opportunity to identify his body so that it could be sent to the correct funeral director. That helped with closure as well, she says.
She concludes: “My mother’s death tore me apart. We couldn’t ever view her body, so in the back of my mind I wonder – was it really her?”