Nov. 1, 2021 -- In pre-pandemic times, end-of-life care professionals tried to make sure loved ones were at the bedside when a patient had only hours or days to live. Like many aspects of medicine, COVID-19 upended that ritual, leaving many people to die alone in isolation, restricted to one visitor for an hour or two or to say goodbye through video conferencing.
Determined to not let those be the only choices, doctors and staff at the David Geffen School of Medicine at UCLA adapted their "3 Wishes" end-of-life recognition program, started in 2017, to meet the challenges of COVID-19.
The program enlists doctors, nurses, and other hospital personnel to create artwork, small mementos, and other personalized reminders for grieving family members and loved ones. And a new study measured its success.
"The inability to say goodbye at the bedside caused distress for many family members," said study author Thanh Neville, MD.
The initiative engaged patients. Participation jumped from an average of 18 patients per month in the year before COVID-19 emerged to 25 patients during the pandemic, the study found.
At the same time, the number of wishes completed during the pandemic jumped to 969, compared to 736 in the year before COVID-19. People with COVID-19 accounted for about one-third of the 969 wishes.
Positive Feedback From Providers
Nurses and other health care professionals otherwise overwhelmed with care of COVID-19 patients welcomed the opportunity to do something positive for families, the study, published Oct. 8 in Critical Care Explorations, also reveals.
"During these tragic months, multiple nurses told me how grateful they were to have a program already in place where they can offer patients and families acts of kindness," said Neville, medical director of the 3 Wishes Program and a pulmonologist in the UCLA Division of Pulmonary and Critical Care.
"Caring for patients at the end of life can be emotionally taxing for any health care worker, especially those working in the ICU during the COVID pandemic," said Nathan Goldstein, MD, president of the American Academy of Hospice and Palliative Medicine.
Although the researchers did not collect data on provider satisfaction specifically, "one could imagine that fulfilling the wishes of dying patients and their families could certainly relieve some of the emotional strain and burden of the health care workers involved," said Goldstein, who was not affiliated with the study.
The Wedding Will Go On
Keepsakes were the most common request among patients. Fingerprint key chains and locks of hair were some of the keepsakes shared with family members and loved ones after death of the patient. Three volunteer artists also created personalized paintings that incorporated patient fingerprints.
The 3 Wishes team adapted infection control measures as well. To ensure the fingerprint keepsakes of people who died from COVID-19 were infection-free, for example, they treated them with ultraviolet irradiation typically used for N95 masks.
Not every wish involved a memento. In one instance, the team brought a Mariachi band to the hospital. Another request, regarding a wedding, stood out in particular to Neville.
"I took care of a patient who was unfortunately at the end of her life. Her family told me that her son recently got engaged and it would mean a lot of the family if she can be part of the wedding," Neville says.
Because the patient was too sick for discharge, they moved the wedding to the hospital. "Given visitation restrictions, we had to host the wedding outdoors and also ask for special permission to have a couple more visitors," she said. "We reserved the terrace outside the ICU for the socially distanced event."
The nuptials featured flowers, cake, and the bride and groom dressed for the occasion. Nurses also made a wedding arch using IV poles and bedsheets. "The 3 Wishes team provided the patient with a nice blanket and pushed her bed outside. The patient smiled in her hospital bed with her nurse at her side," Neville says.
"It was wedding to be remembered," she says. "Seeing the groom, her son, cry tears of joy and sadness made me realize how it was such a privilege to be able to provide such patient- and family-centered care."
Patients and families become eligible for the 3 Wishes Program when the treating team determines that the probability of dying is greater than 95%. They can also participate if a decision is made to withdraw or withhold advanced life support.
During the 25-month study, 523 patients and families took part in the program as part of their end-of-life care. The study included participants from six adult ICUs at two hospitals in the UCLA system.
Frontline Workers Essential to Success
Unlike pre-pandemic times, when such care was generally delivered by specialists, COVID-19 transitioned end-of-life care to frontline health care workers at the bedside. Nurses who want to deliver compassionate end-of-life care "are unequivocally responsible for the success of the 3 Wishes Program," Neville says.
"These nurses often stepped up above their call of duty to provide more than medical care for their patients," she says.
Neville also credits support from UCLA. "I am grateful that I work at an institution that believes in the mission of providing compassionate end-of-life care."
Goldstein describes the UCLA program as "laudable and important. While the UCLA 3 Wishes program is important in that it can help provide some closure to the patient and family, which certainly would have benefits to bereaved family members, I would argue that this is not a palliative care initiative per se but instead a way to comfort the families of dying patients."
A Model Initiative for Others
Neville and team plan to continue the 3 Wishes Program, pandemic or no pandemic. They plan to continue with multiple parts of the program added during the COVID-19 era as well.
Implementing the 3 Wishes Program mainly takes initiative, compassion, and determination, Neville says. "It can be challenging to start, but it is very doable and my team at UCLA are also more than happy to help with tips and guidance."
For more perspective on adapting end-of-life care during the COVID-19, watch this 4-minute video where bioethicist Arthur L. Caplan, PhD, shares his thoughts.