No-visitor policies cause anxiety and distress for patients with cancer

The situation has played out much the same in other countries, where the desire to protect patients and control the spread of the virus has led to unintended consequences. Although some institutions have added more flexibility to their policies over time, no-visitor precautions have caused not only undue distress, but also missed appointments and gaps in care.

Before COVID-19, the visiting policy at the Princess Margaret Cancer Centre, Toronto, ON, Canada, was very liberal. But as the pandemic became a reality, they immediately implemented more stringent policies, and by late March, 2020, a “no-visitor policy” was established, aligning with all other health institutions in Ontario. “The majority of patients were quite understanding of these policies, they understood the limited physical capacity of the cancer centre, and the need to maintain physical distancing to preserve safety for all patients”, said Neesha Dhani, a medical oncologist at Princess Margaret. “However, many still felt that they should be considered exempt from these policies, leading to many challenging discussions among the health-care team members. This has been a tremendous source of angst and distress for patients, their families, and health-care providers alike.”

However, staff members quickly recognised that the strict visitor policy, although crucial, was creating challenges with patient care. “I had a patient who I had been following with advanced ovarian cancer and enlarging lymph nodes for some time”, Dhani said. “Even prior to COVID, she had a lot of anxiety around the side effects of chemotherapy.” The patient had assured Dhani that she was feeling well and her lymph nodes had not changed since the last in-person visit, but that wasn’t true. She was admitted to hospital a month later, and the patient told Dhani that she “did not want to admit that I was having problems over the last month… I was scared you would make me come in to hospital… I am too scared of COVID.”

“This same patient would later delay starting chemotherapy, due to concerns that her family member support could not accompany her for all her appointments, and due to fears of COVID itself”, added Dhani.

In Australia, Danielle Spence, Head of Strategy and Support at Cancer Council Victoria, explained that one important issue was ambiguity around the definition of end of life, which resulted in inconsistent interpretation of the exemptions recommended in the Chief Health Officer’s guidelines. “This led to considerable distress for many families who reported missing out on the vital hours before cognitive decline where it was often too late for meaningful goodbyes”, she said. “Cancer Council’s information and support line has heard many stories from people voicing their fears that they cannot visit a loved one due to current visitor restrictions.”

“One of the key learnings from the pandemic must be to reflect on the patient experience to drive service improvement”, explained Spence. “We need to bring the consumer voice to the table to understand what worked well and not so well so we can implement policies that can ensure health care can be COVID-safe without causing long-term devastation to patients and families.”

At the University of California, Los Angeles (UCLA), CA, USA, stringent restrictions were initially placed on visitors, similar to those implemented medical facilities around the country. “For that first critical day of chemotherapy, it really alters the experience of having to do it alone”, said Kauser Ahmed, a clinical psychologist and Director of Simms/Mann UCLA Center for Integrative Oncology.

The restrictions have been focused on patient safety, but as the pandemic has gone on, “we realise that there are mental health and spiritual needs that have to be considered”, she said.

Initially, there was a lot of distress and fear about what the pandemic meant for immune-compromised patients. Patients were sometimes afraid to come for treatment. “Over time I think they have come to appreciate the commitment that the medical team has for their safety and have become comfortable accessing care”, said Ahmed. “We have not continued seeing drops in appointments, and patients realise that we want them to be safe while they are getting care.”

Although the restrictions are now more flexible, patients are still worried that they do not have all the support they need or if they are able to have regular visitors. “But I think there is an understanding that this is for the greater good, and UCLA has psychosocial care embedded into the medical team, and so we have been creative in finding ways to support them”, Ahmed explained.