Transition from pediatric to adult care brings ‘a level of uncertainty that is inconceivable’

Marcy White is fighting for her son Jacob, who lives with Pelizaeus-Merzbacher disease, as a Sept. 1 deadline approaches to transition to an adult care program. SUPPLIED

On February 18, 2020, Marcy White sat down with The Hospital for Sick Children  to discuss the care plan for her then 17-year-old son Jacob, who lives with a severe neurodegenerative disease.

According to White, she was assured that Jacob, who is unable to walk, speak, sit, breathe or swallow independently, would continue to be supported by the hospital’s complex care team until an adult program that resembles the pediatric model is available to patients like him.
However, three years later, White and her husband received a letter from the hospital informing them that their son, now 21, is being transitioned to adult care. Shockingly, the suggested adult care providers she met with confirmed their inability to offer the same level of comprehensive care for Jacob, with some having zero to minimal experience in treating patients like her son. White notified the hospital, but they remain firm in their decision to transition Jacob on September 1st.
“Wrong, dangerous, heartless and cruel are the words that don’t even begin to describe the behaviour of the team of doctors and administrators who are forcing Jacob off the cliff,” says White.

Understanding the challenges in transition to adult care

Jacob, who is wheelchair-bound and uses a communication device, lives with Pelizaeus-Merzbacher disease (PMD), a rare and progressive neurological disease that impacts motor skills, coordination and cognitive abilities. Symptoms appear in the first year of life and usually start with seizures, abnormal eye movements and loud breathing. Presently, there is no cure for the disease and research in this space has yet to yield any promising results.

Dr. Julia Orkin, pediatrician and medical and fellowship director of the Complex Care Program at The Hospital for Sick Children acknowledged the challenges of a medical transition.
“Many of our families tell us how awful it feels to transition from this program that we have in pediatrics to no such program in the adult system,” she says.
Every year, the hospital facilitates the transition of approximately 10 to 15 patients to adult care, which includes individuals across all programs, not just from complex care. While most patients transition by age 18, the process could be delayed in cases of complex surgery – for example, if a second part of surgery becomes necessary after the child turns 18 and only if there’s no one on the adult side with that particular expertise.
“We’ve never not transitioned a patient to the adult care system, but that doesn’t mean it was perfect,” says Orkin. “There’s still so much that we can do to improve the process, but our Canadian healthcare system requires transition at age 18.”

In Canada, the age at which provinces and territories require the transition of pediatric care to adult services varies, but typically falls between the ages of 16 to 19 or when someone is legally considered an adult. However, the Canadian Pediatric Society is calling for more flexible age cut-offs to accommodate patient differences and recommends that those who are identified as high risk due to a medical or psychosocial complexity be provided with more extensive multidisciplinary transition support.

Another report suggests that youth with medical complexities are experiencing poor health outcomes as they transition to adult care, and this concerning pattern appears to be evident across various conditions, including diabetes, cystic fibrosis, congenital heart disease, and among those who have undergone organ transplants. The report also suggests that a successful transition process should be continuous, coordinated and personalized to meet the unique needs of each patient, and that primary care providers play a crucial role in ensuring the seamless execution of the transition.

However, one primary care provider revealed to Healthing that family doctors are facing challenges in caring for patients with complex needs due to their limited training in managing disabilities and multiple medical complexities. Additionally, they lack access to specialists who can assist them in providing specialized care for patients with G-tubes or ventilators, and even more so when patients require both.
According to the provider, who wished to remain anonymous, supporting family doctors in caring for patients with medical complexities can be achieved through specialized educational programs for physicians, improved access to specialists, and a centralized program that offers comprehensive care with services like ventilators, G-tubes, neurologists, G.I. doctors, and other experts who are experienced in treating patients with complex needs.
Marcy White with family
For Marcy White, top left, the medical transition represents just one facet of the ongoing, multifaceted struggle in caring for Jacob, bottom.

Families losing “invaluable support services” in transition to adult care

Donna Thomas, a parent activist, author and leader in family engagement and disability research, who has experience with her own son’s transition out of pediatric complex care, emphasizes that the concept of transition often translates into patients and their families losing the invaluable support services and wraparound care they once received in the pediatric world.
She points out that the current system seems to have been designed without considering the long-term needs of patients with complex medical conditions as they reach adulthood. Thomas says that these challenges will persist unless there is genuine interest, education, training, and financial incentive for adult providers.
Thomas also serves as a parent partner on a pilot project at The Hospital for Sick Children, where the primary goal is to evaluate the impact of a dedicated navigator role in the transition process – a navigator would work closely with patients and families to identify barriers as well as suitable supports and services that meet their medical needs and ensure a better transition experience. Thomas emphasized the crucial need for a knowledgeable and trained navigator, describing the current process as a daunting journey akin to “moving from a world that feels like a giant hug, to the Arctic circle, with no compass in your hand and no landmarks.”

Training, knowledge and exposure are missing pieces in transition to adult care

Lin Li, a registered pediatric nurse and a PhD student at McMaster University has devoted the last five years of her academic journey to delving into the intricacies of the medical transition process for individuals with debilitating conditions. Through her research, she uncovered a myriad of challenges experienced by patients and their families.

Li explains that in pediatrics, complex care consists of large multidisciplinary teams, and individuals with medical complexities often transition from this type of setting to the care of a family doctor and adult specialists who are limited in their capacity to provide equivalent care without proper training, knowledge or prior exposure to medically complex patients.
“Traditionally, individuals with medical complexities didn’t survive to adulthood, and so the adult system was never designed to support the needs of these young people,” says Li.
Li’s research also sheds light on how a lack of medical knowledge significantly contributes to the culture shock patients and their families experience when they are transitioned out of pediatric care – adult providers may dismiss parents, leaving them feeling like they lack authority and respect, and some caregivers may also struggle with their own health issues and fears around how their mortality could affect their young adult.

Adult care is unprepared for youth with medical complexities

For more than three decades, Linda Till has been actively involved in advocating for children with medical complexities. She has played an integral role in ensuring that Education Act Regulations require inclusive education options for students with exceptional needs and has been instrumental in the closure of Children’s Nursing Homes across Ontario, enabling a successful relocation of children to more supportive family settings in the community.
Her daughter, who lived with cerebral palsy and a rare gastrointestinal condition, transitioned out of the pediatric system decades ago. Despite receiving care from adult providers who were empathetic to her situation, Till found that none could offer a comprehensive response that was tailored to her daughter’s intricate and specific needs. Even seemingly straightforward procedures like starting an IV became a challenge, as the adult providers struggled to locate her daughter’s tiny veins and had to seek assistance from pediatric specialists.
Till believes that the suboptimal care her daughter received contributed to her death – she also says that adult care remains massively unprepared for young adults with medical complexities, and feels there is an unspoken sentiment amongst many people that “these children would be better off dead.” According to Till, there is a perception that those with complex needs are a drain on the health and education systems, on social services, and on community, provincial and national resources, and she believes that there would be less resistance in investing in the long-term care of young adults with complex medical needs if they were tax-paying citizens.
“These young people have a right to equitable supports that are available to other people,” says Till. “They have much to contribute, and there is no legal basis to hold them back from the care they need.”

The impact of transition to adult care on families and caregivers

Research shows that parents and caregivers of medically fragile children often experience depression, anxiety, sleep disturbances, financial challenges, as well as social isolation. The burden of chronic stress also heightens their odds of premature death.

Liv Mendelsohn, executive director at the Canadian Centre for Caregiving Excellence , described just how difficult and disorienting the transition process can feel for patients and their caregivers.

“Families often dread the transition from child services and care to the adult system, and many refer to this process as ‘falling off the cliff,’” she says.
For Marcy White, the medical transition represents just one facet of the ongoing, multifaceted struggle in caring for her complex child. According to her, a major and daunting challenge for parents in her position is not only managing the medical aspects of care, but also ensuring that the nurses who care for their child are competent and properly trained.
“After two decades of this, I am beyond exhausted – a tiredness that isn’t relieved with sleep and one I can’t properly describe,” says White. “So now add to this a completely new care team who doesn’t know my son and who doesn’t have experience with feeding tubes, ventilators, suction machines, oxygen and seizures, and doctors who won’t communicate through email or text, some of whom only work part-time. This creates a level of uncertainty that is inconceivable.”
Originally published in Heathing. View the original article here.