With Life in the Balance, a Pediatric Palliative Care Program Expands Its Work to Adults

Doug Brunk

May 11, 2020

Editor's note: Find the latest COVID-19 news and guidance in Medscape's Coronavirus Resource Center.

In late March of 2020, when it became clear that hospitals in the greater New York City area would face a capacity crisis in caring for seriously ill patients with COVID-19, members of the leadership team at the Children's Hospital at Montefiore (CHAM) in the Bronx, N.Y., convened to draft a response plan.

The recommendations put into action that day included moving the hospital's emergency department from the lower level to the fourth floor, increasing the age limit for patients seen in the ED from 21 years of age to 30 and freeing up an entire hospital floor and a half to accommodate the anticipated surge of patients with COVID-19 admitted to Montefiore's interconnected adult hospital, according to Sarah E. Norris, MD.

"We made multiple moves all at once," said Dr. Norris, director of pediatric palliative care at CHAM. "It struck everyone as logical that palliative care had to be expanded, because all of the news we had received as the surge came to New York from around the world was full of death and uncertainty, and would require thoughtful conversations about end-of-life wishes at critical times and how to really respect the person and understand their values."

When Dr. Norris left the leadership team meeting, she returned to her office, put her face in her hands, and sobbed as she began to process the gravity of what was ahead. "I cried because I knew that so many families were going to suffer a heartbreak, no matter how much we could do," she said.

Stitching the QUILT

Over the next few days, Dr. Norris began recruiting colleagues from the large Montefiore Health System – most of whom she did not know – who met criteria for work deployment to expand CHAM's palliative care program of clinician to 27 clinicians consisting of pediatricians, nurse practitioners, and psychologists, to meet the projected needs of COVID-19 patients and their families.

Some candidates for the effort, known as the Quality in Life Team (QUILT), were 65 years of age or older, considered at high risk for developing COVID-19-related complications themselves. Others were immunocompromised or had medical conditions that would not allow them to have direct contact with COVID-19 patients. "There were also clinicians in other parts of our health system whose practice hours were going to be severely reduced," said Dr. Norris, who is board-certified in general pediatrics and in hospice and palliative care medicine.

Once she assembled QUILT, members participated in a 1-day rapid training webinar covering the basics of palliative care and grief, and readied themselves for one of three roles: physicians to provide face-to-face palliative care in CHAM; supportive callers to provide support to patients with COVID-19 and their families between 12:00-8:00 p.m. each day; and bereavement callers to reach out to families who lost loved ones to COVID-19 and provide grief counseling for 3 weeks.

"This allows families to have at least two contacts a day from the hospital: one from the medical team that's giving them technical, medical information, and another from members of the QUILT team," Dr. Norris said. "We provide support for the worry, anxiety, and fear that we know creeps in when you're separated from your family member, especially during a pandemic when you watch TV and there's a death count rising."

During her early meetings with QUILT members via Zoom or on the phone, Dr. Norris encouraged them to stretch their skill sets and mindsets as they shifted from caring for children and adolescents to mostly adults. "Pediatricians are all about family; that's why we get into this," she said. "We're used to treating your kids, but then, suddenly, the parent becomes our patient, like in COVID-19, or the grandparent becomes our patient. We treat you all the same; you're part of our family. There has been no adult who has died 'within our house' that has died alone. There has either been a staff member at their bedside, or when possible, a family member. We are witnessing life until the last breath here."

"They Have No Loved Ones With Them"

One day, members of CHAM's medical team contacted Dr. Norris about a patient with COVID-19 who'd been cared for by Montefiore clinicians all of his young life. The boy's mother, who did not speak English, was at his bedside in the ICU, and the clinicians asked Dr. Norris to speak with her by cell phone while they prepared him for intubation.

"We were looking at each other through a glass window wall in our ICU," Dr. Norris recalled. "I talked to her the entire time the team worked to put him on the breathing machine, through an interpreter. I asked her to tell me about her son and about her family, and she did. We developed a warm relationship. After that, every day I would see her son through the glass window wall. Every couple of days, I would have the privilege of talking to his mother by phone. At one point, she asked me, 'Dr. Norris, do you think his lungs will heal?' I had to tell her no. Almost selfishly, I was relieved we were on the phone, because she cried, and so did I. When he died, she was able to be by his side."

Frederick J. Kaskel, MD, PhD, joined QUILT as a supportive caller after being asked to go home during his on-call shift on St. Patrick's Day at CHAM, where he serves as chief emeritus of nephrology. "I was told that I was deemed to be at high risk because of my age," the 75-year-old said. "The next day, a junior person took over for me, and 2 days later she got sick with COVID-19. She's fine but she was home for 3 weeks sick as a dog. It was scary."

In his role as a supportive caller, Dr. Kaskel found himself engaged in his share of detective work, trying to find phone numbers of next of kin for patients hospitalized with COVID-19. "When they come into the ER, they may not have been with a loved one or a family member; they may have been brought in by an EMT," he said. "Some of them speak little English and others have little documentation with them. It takes a lot of work to get phone numbers." Once Dr. Kaskel reaches a loved one by phone, he introduces himself as a member of the QUILT team. "I tell them I'm not calling to update the medical status but just to talk to them about their loved one," he said. "Then I usually ask, 'So, how are you doing with this? The stress is enormous, the uncertainties.' Then they open up and express their fears. I've had a lot of people say, 'we have no money, and I don't know how we're going to pay rent for the apartment. We have to line up for food.' I also ask what they do to alleviate stress. One guy said, 'I drink a lot, but I'm careful.' "

Dr. Kaskel, who is also a past president of the American Society of Pediatric Nephrology, applies that same personable approach in daily conversations with adult patients hospitalized at CHAM with COVID-19, the majority of whom are African Americans in their 30s, 40s, and 50s. "Invariably, they ask, 'Has my loved one been updated as to my status?' " he said. "The second thing they often say is, 'I'm worried about infecting other people, but I also worry if I'm going to get through this. I'm really afraid I'm going to die.' I say, 'You have a wonderful team keeping track of you. They're seeing you all the time and making changes to your medicines.' "

When patients express their fear of dying from the virus, Dr. Kaskel asks them how they're coping with that fear. Most tell him that they pray.

"If they don't answer, I ask if they have any hobbies, like 'Are you watching TV? Are you reading? Do you have your cell phone?' " he said. "Then they open up and say things like, 'I'm listening to music on the cell phone,' or 'I'm FaceTiming with my loved ones.' The use of FaceTime is crucial, because they are in a hospital, critically ill, potentially dying alone with strangers. This really hit me on the first day [of this work]. They have no loved ones with them. They have strangers: the CHAM nurses, the medical residents, the social workers, and the doctors."

No Hospital Cheeseburgers

QUILT began its work on April 6, and at one time provided palliative care services for a peak of 92 mostly adult patients with COVID-19. The supportive callers made 249 individual connections with patients and family members by phone from April 6-13, 162 connections from April 13-19, and 130 connections from April 20-26, according to Dr. Norris. As of April 28, the CHAM inpatient census of patients aged 18 years and over with COVID-19 was 42, "and we're making 130 connections by phone to patients and family members each day," she said.

QUILT bereavement callers are following 30 families, providing 3 weeks of acute grief counseling from the date of death. "A sad truth is that, here in New York, our entire funeral, burial, cremation system is overwhelmed in volume," Dr. Norris said. "Only half of the patients we're following 3 weeks out have been able to have their family member buried or cremated; many are still waiting. What strikes me here is that pediatricians are often partners in care. With time, we're partners in care in heartbreak, and in the occasional victory. We mourn patients who have died. We've had colleagues who died from COVID-19 right here at our hospital. But we stand together like a family."

Dr. Norris recalled an older woman who came into CHAM's ICU on a ventilator, critically ill from COVID-19. She called her husband at home every day with updates. "I got to know her husband, and I got to know her through him," Dr. Norris said. "We talked every single day and she was able to graduate off of the breathing tube and out of the ICU, which was amazing." The woman was moved to a floor in the adult hospital, but Dr. Norris continues to visit her and to provide her husband with updates, "because I'm devoted to them," she said. Recently, physicians in the adult hospital consulted with Dr. Norris about the woman. "They were trying to figure out what to do with her next," she said. "Could she go home, or did she need rehab? They said, 'We called you, Dr. Norris, because her husband thinks he can take her home.' We know that COVID-19 really weakens people, so I went over to see her myself. I thought, 'No single person could take care of an adult so weak at home.' So, I called her husband and said, 'I'm here with your wife, and I have to tell you; if she were my mother, I couldn't take her home today. I need you to trust me.' He said, 'OK. We trust you and know that you have her best interest at heart.' "

Dr. Kaskel relayed the story of an older patient who was slowly recovering from COVID-19. During a phone call, he asked the man if there was anything he wanted at that moment.

"He said, 'I'd love to see my wife and my children and my grandkids. I know I'm going to see them again, but right now, doc, if you could get me a cheeseburger with lettuce and tomato and ketchup and French fries from outside of the hospital, I'd be the happiest man in the world.'

I said, 'What's the matter with the cheeseburger made at the hospital?'

He said, 'No! They can't make the cheeseburger I want.'

I promised him I'd relay that message to the social worker responsible for the patient. I told her please, if you buy this for him, I'll pay you back."

Self-care and the Next Chapter

Twice each week, QUILT members gather in front of their computer monitors for mandatory Zoom meetings facilitated by two psychologists to share challenges, best practices, and to discuss the difficult work they're doing. "We meet, because you cannot help someone if you cannot help yourself," Dr. Norris said. "We have been encouraged each and every meeting to practice self-compassion, and to recognize that things happen during a pandemic – some will be the best you can do."

She described organizing and serving on QUILT as a grounding experience with important lessons for the delivery of health care after the pandemic subsides and the team members return to their respective practices. "I think we've all gained a greater sense of humility, and we understand that the badge I wear every day does not protect me from becoming a patient, or from having my own family fall ill," she said. "Here, we think about it very simply: 'I'm going to treat you like you're part of my own family.' "

Dr. Kaskel said that serving on QUILT as a supportive caller is an experience he won't soon forget.

"The human bond is so accessible if you accept it," he said. "If someone is an introvert that might not be able to draw out a stranger on the phone, then [he or she] shouldn't do this [work]. But the fact that you can make a bond with someone that you're not even seeing in person and know that both sides of this phone call are getting good vibes, that's a remarkable feeling that I never really knew before, because I've never really had to do that before. It brings up feelings like I had after 9/11 – a unified approach to surviving this as people, as a community, the idea that 'we will get through this,' even though it's totally different than anything before. The idea that there's still hope. Those are things you can't put a price on."

An article about how CHAM transformed to provide care to adult COVID-19 patients was published online May 4, 2020, in the Journal of Pediatrics: doi: 10.1016/j.jpeds.2020.04.060.

This story originally appeared on MDedge.com.


Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.