End-of-Life Visitation with Safety and Compassion

June, 2020

If your loved one were hospitalized and nearing the end of life during the COVID-19 crisis, would you want to visit him or her to say good-bye? It’s a hard question to ponder. And one where many loved ones have not had a choice.

For sound reasons of infection control and conserving personal protective equipment (PPE), most hospitals closed visitation at the outset of the COVID-19 outbreak. Fewer visitors meant fewer vectors for infection spread, both among hospital staff and in the community; it also meant that the support and connection patients usually received from visiting loved ones was missing. Patients who were conscious and alert could connect with their support systems via technology. However, for patients nearing the end of life, that option was often inaccessible.

For loved ones, this created situations of anguish as they struggled to say good-bye in the most difficult of circumstances. At the same time, care team members acted heroically to facilitate connection with technology, and to provide a loving presence for end-of-life patients, but the effort was taking a toll.

Building a Process Based on Empathy and Support

Seeing distress among both loved ones and care team members, leaders at Community Health Network (CHNw) in Indianapolis, IN, decided to make exceptions to the “no visitation” rule for end-of-life patients. “We wanted to build a process around empathy and wrapping our arms around people dealing with the trauma of being apart from their loved ones,” said Sarah (Helms) Rankin, MBA, PMP, CLSSBB, network manager of patient experience.

Knowing the considerations were multi-faceted, CHNw assembled a team comprising palliative care, operations, patient access, patient experience, and the team members who would act as initial liaisons for incoming visitors.

Knowing that loved ones would be in a state of emotional upset, the team discussed every angle of the visitation, from communication to arrival, from PPE to possible post-visit self-isolation. They didn’t want to leave anything to chance or misperception.

The team devised a call script that initial liaisons could follow to inform families that patients could have up to two visitors. “We had to change the language from, ‘We’d like to offer visitation...’ to ‘We will allow two visitors...’ because grieving loved ones would hear the first few words, hang up, and rush to the hospital,” explained Rankin.

The script goes on to screen potential visitors for COVID-19 symptoms and describes the further screening they’ll receive at the hospital. For the protection of the staff, patients, and other visitors, symptomatic visitors are not currently allowed.

CHNw team members also describe to visitors the logistics of arriving, using PPE, the length of the visit, and how visitors should prepare for their own self-isolation after the visit to prevent any family or community spread in the unlikely event of accidental exposure. “We know that with all of their emotions they won’t always be able to take in what we’re saying,” said Rankin, “but we want them to be as prepared as possible.”

Embracing Humanity at Every Step

The CHNw system is designed with clear and open understanding of human fallibility – especially at times of heightened emotions. “We thought about things like crying in protective goggles and not touching your face,” explained Rankin. “We tell visitors to just let the tears happen, but we know they’ll want to wipe the tears. If that happens, a nurse will take them outside and redo their PPE. We plan for the best, but we’re prepared for whatever happens.”

I asked Rankin how care team members reacted to the news that visitors would be allowed for end-of-life patients. “They breathed a sigh of relief,” she said. “It’s like a weight was lifted off their shoulders.”

Many loved ones have visited CHNw facilities to say good-bye to patients with and without COVID-19. The team at CHNw hopes that their approach will create a sense of peace and help ease the suffering that comes with end-of-life.

Some families have opted not to visit, not wanting a fraught hospital visit to be their final memory of their loved ones. “And that’s okay,” said Rankin. “In those cases – and for every patient – our care teams are still there to provide compassion and caring until the end.”