Employing telehealth to ease the hospice transition for kids with cancer

Hospice plays a critical role in providing care and comfort to patients at the end of their life. A challenging time for patients and their loved ones, hospice care relies on coordinated efforts from various experts, including physicians, nurses, social workers, and spiritual advisors, according to the National Institute on Aging. To support this care coordination, one Georgia-based pediatric hospital has turned to telehealth technology.

In a study published in the Journal of Pain and Symptom Management last month, Children's Healthcare of Atlanta researchers detailed a telehealth-based intervention the hospital has employed to ease the transition to hospice for young cancer patients and their families.

Cancer is one of the most common pediatric conditions resulting in a referral to pediatric hospice and palliative care, with over a third (36 percent) of referrals concerning cancer patients, according to a June 2023 report released by the National Hospice and Palliative Care Organization.

Additionally, the report shows that 57 percent of healthcare organizations provided pediatric hospice services at home. Children's Healthcare of Atlanta is one such organization.

According to Katharine E. Brock, MD, director of the supportive care clinic at the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta, providing hospice services at home gives supportive care teams invaluable insights into their patients’ lives.

“This is what hospice nurses do: they go into the patient's home,” said Brock in an interview with mHealthIntelligence. “Even the hospital providers, we used to go out and do home-based visits with families, and you would get a very different perspective of what a family's life was like — what resources they have, what challenges they have.”

However, while these home hospice visits are an effective way to build a rapport with families and break down access barriers among patients who may be bed-bound, they are time-consuming, added Brock, who is also an associate professor of pediatrics at Emory University School of Medicine.

Initially, Children’s used the telephone to support access to coordinated hospice care, but even that became challenging.

“I can't see the look on their face,” Brock said. “I can't see those things when we're discussing these very difficult and in-depth concepts. And so that's where the idea for a telehealth-based intervention came up that has the audio of a phone-based conversation, but the video that incorporates the window into people's homes. They can walk us around the home, they can show us what's going on, [and] we can get a better sense for what's going on.”

In 2019, Brock and her team at Children’s submitted a grant request to the Rally Foundation for Childhood Cancer Research to support a telehealth-based intervention for hospice transitions. Though it was rejected initially, a year later, the grant request was accepted after the onset of the COVID-19 pandemic and the concurrent telehealth boom. Children’s began enrolling patients eligible for hospice between January 1, 2021, and December 31st, 2022, in a pilot of the telehealth intervention.

The intervention includes a series of coordinated telehealth visits during the first month of hospice enrollment for children or young adults, 29 or younger, with cancer.

“Coordinated means between the hospital, so your oncologist or your palliative care physician or nurse practitioner at the hospital, and your hospice nurse at the home — generally a community hospice nurse. And then the third part of that coordinated trio or coordinated triad was the family,” Brock explained.

These telehealth visits occurred three times during the first month of hospice enrollment or weekly until the patient died. Hospice nurses participating in the pilot received a tablet equipped with mobile WiFi cellular service that they would take to the family's home, which enabled the nurses and families to join the call. Families could also use their personal devices if they preferred.

Researchers from Children’s, led by Brock, assessed the pilot's efficacy by surveying adult patients, caregivers, oncology and palliative care clinicians, hospice nurses, and administrators about the feasibility and acceptability of the intervention after the first and third telehealth visits.

The researchers included 19 patients who completed the first telehealth visit, of whom 13 completed the third visit. Brock noted that they also followed families after the third visit for four to six months into their bereavement.  

The most important finding of the study was that coordinated telehealth visits between the hospital, hospice, and the families during the first month of hospice enrollment were feasible and acceptable to all participants.

“It was feasible and acceptable, which was something we were worried about, considering the potential proximity to the end of life and the amount of stress and things that these families had going on,” Brock said.

There were two other significant takeaways, according to Brock. One, the study shows that families rated telehealth-based hospice services as highly satisfactory after visit three and during bereavement. Two, both community hospice nurses and hospital-based clinicians involved in the pilot agreed that the telehealth visits provided an opportunity for interprofessional collaboration.

The latter is noteworthy because in Georgia, hospice nurses typically only care for two to six pediatric patients a year, Brock explained. Most hospice nurses never get enough experience to become experts in pediatric hospice care. The telehealth-based intervention allowed these nurses to sharpen their skill sets through communication and collaboration with pediatric clinicians.

Outside of the formal study, the researchers observed several other benefits stemming from the intervention.

For instance, the intervention allowed the patients and their families to voice concerns or ask questions to their hospice nurse, who could then communicate with the hospital-based clinicians on their behalf or help clarify things during and after telehealth visits.

This also helped alleviate the sense of abandonment some patients feel when they enroll in hospice and their care moves from the hospital to a community-based hospice organization.

“They aren't really coming to the clinic often,” Brock said. “And so there is this sense of abandonment. And that was the other thing with this study that I really wanted to try to overcome: that we are still here. We are not abandoning [you]; we are with you until the end and beyond, but how do we help you not feel [abandoned]?”

Not only does telehealth help mitigate that sense of abandonment, but it also eliminates the need for burdensome travel. Brock noted that in those last few months or years of life, the last thing patients or families want to do is spend precious time and energy driving to and from clinics.

As the intervention continued through the study period and beyond, the team and Children’s found that some concerns surrounding telehealth deployment were illusory.

For one, providers worried about whether it is possible to have difficult conversations virtually, Brock said. However, patients and families did not share this concern; instead, they indicated that they did not feel any significant drop-off in the level of care and, in many cases, preferred the telehealth option.

Another concern was digital health literacy, but Brock stated that children and young adults are adept at most types of technology, so they do not find it hard to use the tools and can help their families with technical issues.

Supportive care, especially in oncology, is growing increasingly popular. Brock highlighted this point by noting the rapid growth of the supportive care clinic at Aflac Cancer and Blood Disorders Center since its inception in 2017.

“When we started that clinic, less than 30 percent of patients that died [of cancer] had received specialty palliative care,” she said. “And now nearly 80 percent of the patients that die receive specialty palliative care. And so, the incorporation of palliative care supportive care into the outpatient cancer center is really crucial for providing holistic, patient-centered, and family-centric care.”

With hospice, cancer patients' symptoms are more likely to be well-managed, and they can spend more time at home, Brock added. Additionally, hospice care providers offer vital bereavement support to families after the child has passed away.

Telehealth helps bring hospice benefits to a broader swath of cancer patients and their loved ones, enhancing care coordination and collaboration at a time when accurate communication is critical. Brock believes that by bringing all stakeholders involved in pediatric cancer patients’ care together on one call, telehealth helps reduce the risk of errors and miscommunication. It also offers much-needed wraparound care at a uniquely distressing time.

“Our entire goal in supportive care and also the home hospice team is to make each day as good as possible and to help the patient and their family live each moment as best that they can,” Brock said. “And when we frame things in that way, there aren't a lot of families who don't want that for their child.”