Palliative care is one of the areas of nursing where visitors are common. Families and friends are intimately involved in the lives of our patients, especially those patients who are dying. When done well, it is holistic care at its finest. In that distant time known as pre-COVID, it was not uncommon for more than five visitors to be at a bedside throughout the day, and families regularly stayed overnight as well.
I finished my grad year in 2019 by visiting my in-laws in Singapore. My family flew back to Melbourne on Chinese New Year 2020, followed closely by reports of mass outbreaks of COVID in Singapore. I returned to my much-loved work as a nurse in my hospital’s palliative care unit with a sense of foreboding. And not without reason. COVID was to impact palliative care in profound ways.
When March 2020 came, only two visitors were allowed at the bedside, increasing to four when the patient was in the last twenty-four to forty-eight hours of life—the terminal phase.
By May, these restrictions had escalated. Even in the terminal phase, only two visitors were allowed at the bedside. Patients in end-of-life—those with a few weeks to live—could have only one visitor, once a day, for only two hours.
In July, the most stringent restrictions came in. Throughout the hospital, no visitors were allowed except at the end-of-life stage and when children or carers were involved. As a result, our palliative care unit was one of the only wards in the hospital that had regular visitors as most of our patients were in the end-of-life stage. Only one nominated visitor could visit a person in end-of-life care and only for one hour a day—and it had to be the same person each day. When death was imminent, four immediate family members had to be nominated, and these could only visit two at a time. Again, these four visitors could not be swapped or substituted—unfortunate if the patient had a large family.
The burden of restrictions was exacerbated at night. We had to call security a few times when family members let others in overnight or did not leave when others came.
I remember one family that was so desperate to see their loved one that they drove our ward clerk to tears over the phone. The next phone calls they made were put through to me as the patient’s nurse. The patient was not expected to die in the next twenty-four to forty-eight hours so was not considered terminal, and the sad fact remained, no out-of-hours visitors were allowed for non-terminal patients. I understood the family’s pain—the patient had been in hospital for months by the time they got to us—but I had to tell them that there was nothing I could do. One day, after a phone call lasting more than fifteen minutes, the family finally accused me of having ‘no compassion’. Then they hung up. I put down the phone and burst into tears.
For the record, accusing a palliative nurse of not having compassion is probably the worst insult you can give them. But I, and my colleagues, have had that accusation thrown at us many times over the past few years because we’ve had to tell families that they couldn’t visit—a rule that we had little or no control over.
The alleviation of restrictions in the community did not improve matters. Outside, people would be having coffee at cafés without masks, having parties in increasing numbers. But in the hospital, there were still restrictions: visitors had to be fully masked and vaccinated and only two could visit at any one time, and then only for limited hours.
The more the restrictions eased, the more the visitors pushed the boundaries and complained. It would be hard to find a single assistant nurse unit manager who didn’t end a shift in tears at least once during that time, and hard to find a nurse who hadn’t experienced an irate family member complaining about visiting.
There was inconsistency too. Often, it was the aggressive families, those who yelled the loudest, who got rewarded with exemptions. And even after an exemption was granted, it seemed that the aggression didn’t cease. My colleagues felt at times that we weren’t being listened to, that the abusers were getting heard, not the abused.
All of this was made worse because we weren’t living in a vacuum ourselves. During COVID, one of our colleagues died suddenly. None of us could attend the funeral, relying instead on a video link. Others hit major milestones such as retirement and did not get farewelled or celebrated. A few colleagues had to postpone a much-awaited wedding or holiday. For me personally, I lost a much-loved member of my church and my last grandparent during the lockdowns.
In the case of my Nan, she was in NSW, and I was unable to cross the border to attend. My parents and all my wife’s family were in Singapore, my brother was in WA. For two years or more, all my kids knew of their extended family were Zoom calls.
All palliative care nurses knew what people were going through because we were going through similar trials ourselves. We too lost loved ones. We too suffered loneliness when we needed companionship. We too missed key events in our lives.
It was not that we wanted to enforce the rules. Far from it! It was because we had to enforce the rules—to keep ourselves and other peoples’ loved ones safe.