Delivering a personal touch — from a distance
At Michigan Medicine, caring for the whole patient has always meant reaching out to families and the surrounding community.
The COVID-19 pandemic wasn’t going to stop clinical teams from continuing this support, especially when additional precautions were needed more than ever. To continue their outreach, faculty and staff are using all the technology available to bring patients, families and communities even closer together during trying times.
Kennedy, a patient at C.S. Mott Children’s Hospital, requires frequent care to help manage her sickle cell disease through the Pediatric Comprehensive Hemoglobinopathies Clinic. Among the procedures she undergoes at Michigan Medicine are chronic transfusions and port flushes.
“As COVID-19 began to directly impact Michigan, our sickle cell warrior had to have her port removed due to complications,” said Shavonn Burgess, Kennedy’s mother. “The procedure alone caused anxiety for my husband and I, and the unknowns of COVID-19 tripled our anxiety. However, the hematology team was there to answer all our questions and help us ensure our daughter’s safety before, during and after the procedure.”
Indeed, clinical teams within pediatric hematology/oncology reach out to patients with hemoglobin disorders and their families with support to ensure they understand upcoming procedures and are aware of available resources. Once COVID-19 hit, the sickle cell clinical team turned follow-up appointments into phone or virtual visits. Often during such visits, team members are able to connect families with resources both within and outside of Michigan Medicine.
“Beth Stuchell (a learning specialist in Child and Family Life) contacted me to check in on Kennedy,” said Burgess. “I responded that we were doing well and as a side note mentioned I was a bit anxious about possibly having to return to the office — potentially putting Kennedy at risk of COVID-19. I didn’t expect a solution from Beth since she is the school liaison, but she talked with Dr. Rajen Mody, the medical division director, who provided documentation that recommends working caregivers either work remotely or avoid close contact with others in the workplace. She told me who to contact if/when I needed help. Beth took the time to solve a problem without me even having to ask and I really appreciate that.”
The clinical team also compiled a wide-ranging resource list that included food bank information, financial aid, coping resources and educational support.
“We worked through our entire patient list to connect with each family and let them know we are continuing to support their needs during this pandemic despite reduced face-to-face clinic visits,” said clinical social worker Nicole Farrackand, LMSW.
While social workers are contacting families of all hematology/oncology patients, the team was particularly concerned with the sickle cell patients.
“We knew it was imperative to reach out to our sickle cell patients in particular since the Centers for Disease Control and Prevention indicated them as a population vulnerable to COVID-19,” said Farrackland.
“As a sickle cell warrior, Kennedy could experience complications at any time that could require hospital care. That’s scary right now,” Burgess said. “The resources are great to have because they answer many of my questions, even beyond medical care. I appreciate that the hematology team always looks at their patients’ entire well-being.
“Kennedy can’t go to ‘the doctor’s house’ as she calls Mott,” Burgess added. “But that’s the only thing that has changed. The hematology team is here to support us if we need anything.”
Stepping Stones Pediatric Palliative Care (S2P2), an inpatient service, and Partners for Children (PFC), an outpatient, community-based program, both support families of children with complex, serious and life-threatening conditions, such as cancer, congenital heart disease, and genetic or neurologic conditions.
Traditionally, the PFC care team conducts in-home visits every six-to-eight weeks with families of approximately 100 children, while S2P2 supports approximately 215 children on the inpatient side and in the clinic. These children have multiple specialists caring for them, and frequent hospitalizations are not uncommon.
“We were lucky enough to receive a grant to offer virtual visits before the pandemic occurred,” said Elizabeth Estrada, LLMSW, a social worker on the team. “Our administrative staff initially walked the families through the process, making it easier on them. The children were excited to see our faces on their tablets or smartphones and we were excited to continue our visits which give us an illuminating way to see our patients when they are doing well, in their own, familiar environments.”
For the parents, it’s a welcome service.
“I am grateful that someone who knows us is able to see him during this scary time,” said one parent about the virtual visits.
The team also operates a 24/7 phone number that families can call if needs arise day or night.
“I feel more comfortable during this time knowing that I have a team to call when all of these uncertainties are around me,” said a family member.
Many appreciated the additional COVID-19 information and resources the team provided.
“I just want to give my thanks for the reassuring words regarding COVID-19,” said one parent. “It’s certainly been a constant worry for our family. Your help gave me a chance to take a breath.”
Is your team doing exceptional work despite restricted face-to-face visits? Let Headlines know at email@example.com!
And do you want to learn more about Kennedy and her family? Check out this story shared by her mother Shavonn Burgess, a family advisor in the Office of Patient Experience.