Cliff or bridge: breaking up with the paediatric healthcare system

Abstract

Transition from paediatric to adult healthcare is a normal part of the care trajectory, yet the process often leaves much to be desired. In this commentary, I share my family’s journey of this care transition, particularly the handover aspect, by providing examples of different ways that relationships were ended by paediatric healthcare professionals. The ending of these relationships often felt like ‘breaking up’. I also share an example of a supported handover, which bridged the transition from paediatric to adult care. To improve transitions, we need genuine acknowledgement of the paediatric medical trauma stress (PMTS) experienced by families such as mine following years of interactions in the healthcare system. Along with following transition checklists, patients and families need authentic and meaningful closure to longitudinal relationships and trauma-informed care practices as we move forward into the adult care system.

Theoretically transition planning, that is, the preparation process to ensure youth move smoothly from the paediatric to adult healthcare system, is well understood. Optimal transitions include characteristics such as: beginning early, including youth and their families in planning, multi-disciplinary team involvement, communication between the paediatric and the adult provider, and transfer of complete medical records (1–3). Yet, youth and their families consistently share experiences that are far from ideal, and instead this transition is often referred to as ‘falling off a cliff’. In this commentary, I share our experiences around a key aspect of care transitions: the handover. Traditionally, handover entails a one-directional sharing of medical records, however, this is often inadequate for medically complex patients who would benefit from a collaborative handover approach (e.g., joint appointment with specialists).

My daughter is part of the almost 1% of paediatric patients who are medically complex (4). Although they are small in number, children with medical complexity are high users of paediatric healthcare services (5,6). Medical complexity is characterized by: complex and chronic conditions needing specialized care, high use of healthcare services, and functional limitations that require substantial assistance in daily life (7). From the first month of her life, we knew that my daughter had an ultra-rare genetic difference, which resulted in a multitude of health issues. Over the course of her childhood and adolescence she received two dozen medical diagnoses (not all remain active), saw at least a dozen medical specialists, experienced numerous hospitalizations, and was connected to community-based healthcare supports as well. Increasingly, youth like my daughter are outliving their life expectancies and moving into an adult healthcare system that was never designed to address their complex needs. Hence, the burden of navigating the healthcare system is often placed on the youth and their family.

As a PhD-prepared Registered Nurse, I admit that I thought our transition process would go smoothly given my understanding of healthcare systems. I was wrong. We experienced the bad and the good, which I describe below.

THE BREAK UPS

I quickly learned that the transition to adult healthcare is often similar to different kinds of relationship break ups. To be clear: my examples were not flings. They were 14+ year relationships that involved multiple appointments or points of contact each year.

THE ‘DEAR JOHN’ LETTER

For those not familiar with the reference, a ‘Dear John’ letter was a brief letter mailed to soldiers on the frontline from their sweethearts who were ending the relationship (8).

In our case, my daughter completed high school in June 2022. During the summer, I received a form letter in the mail from the supervisor of the allied health team who had consulted on specialized equipment and provided an Activities of Daily Living care plan during my daughter’s 14 years of public education. The letter stated that she was discharged from their program and provided a generic number for me to contact should she continued to require support.

Dear Reader: Obviously she continues to need support in these areas. She did not miraculously recover from medical complexity in the six weeks since completing school.

‘IT’S NOT YOU, IT’S ME’

Now everyone who has been through this kind of break-up knows what it is about—it is actually about you, not me. In the years leading up to my daughter’s ‘transition age’ I had dutifully followed my parent/self-management checklist and initiated conversations with medical specialists about the plan. One had been my daughter’s specialist for 15 years. At each appointment and conversation, they reassured me that they were not planning to discharge her any time soon. Then, at the end of her most recent appointment, they said ‘you don’t need me anymore’ and that this was the final appointment. In disbelief, I asked if they were referring her on to a new specialist in the adult system and they said ‘no, no one does what I do’.

I’ll admit that I held it together until the parking lot but once there I let myself have a good cry. At bedtime that evening, my daughter said to me ‘Dr. X doesn’t need me anymore. That makes me sad’. That might not be what they said, but that is what she heard.

GHOSTING

This is when you just never hear from that person again.

In this situation, a specialized clinic that my daughter had attended since the age of five had not been in touch for some time. When I reached out to them, the clinician said ‘here’s the generic number for you to call at your health authority for adult care’. Upon reflection, they agreed to see my daughter ‘one last time’. During that appointment, I asked again about transition care and they said ‘it’s very complicated’ and, again, referred me to the generic number.

WHAT IS NEEDED: THE HANDOVER

Another paediatric specialist did the ‘handover’ transition right. They initiated the conversation about transitioning about a year ago. They reached out to a colleague in adult care and, with our permission, shared my daughter’s situation with them to ensure it was going to be a ‘good fit’. The adult care specialist agreed to accept my daughter as their patient. Our paediatric specialist will now make a formal referral and will continue seeing my daughter until she has an appointment with the adult care specialist. All of this was communicated with my daughter and I in a supportive and clear way. By taking a relatively small amount of time to acknowledge and honour our shared time and experiences, the paediatric specialist created space for us to contribute to the transition plan and ask questions, while also providing a sense of closure around our relationship with them.

DISCUSSION AND RECOMMENDATIONS

As healthcare professionals, we would never leave a shift or end a rotation without doing a proper handover to the incoming team. In the same way, these transitions need to be handed over to the next provider. Toulanv, Gorter, and Harrison provide clear guidance on planning and implementing transitions from paediatric to adult healthcare services (9). These recommendations involve starting early with an individualized plan, as well providing support before and after transition. More information and resources can be found on the Health Hub in Transition website: https://www.transitionhub.ca/.

An added layer to consider in these families are the mental health impacts of navigating complex health, educational, and social systems over a prolonged period. Families of children with medical complexity report elevated stress (10,11) and poorer maternal health outcomes (12). As a result of chronic anxiety and stress, many children with medical complexity and their parents develop paediatric medical trauma stress (PMTS) (13,14). As explained by Dewan and colleagues, ‘interactions and events that seem innocuous to healthcare providers may be perceived as traumatic’ (13, p. 2). Poor transitions may exacerbate PMTS and further contribute to trauma experienced by these families.

To address the unique needs of these families, paediatric healthcare systems ought to be guided by trauma-informed care. Characteristics of trauma-informed patient–provider relationships include: building trust through transparency, taking a collaborative, and bidirectional approach to information sharing, and authentic shared decision-making. At an organizational level, trauma-informed care acknowledges systematic bias in healthcare rooted in gender, class, and race and takes actions to mitigate these biases (15). In relation to the handover in transitions, many of the characteristics of trauma-informed care were evidenced in the final exemplar. Over the course of many years, the specialist had fostered trust with our family, they began having conversations about the transition process well before it happened, they collaborated with us and provided a rational for choosing a particular adult specialist, and communicated with that adult specialist to ensure they understand my daughter’s interpersonal care needs beyond the information in her chart.

Another important aspect of trauma-informed care is honouring the relational component. For children with medical complexity and their parents, healthcare professionals who are part of their longitudinal care are an integral part of their family life. These clinicians may have quite literally saved their life (on more than one occasion), or made life more comfortable, or given them supports that increased their sense of belonging and inclusion in the community. When a transition in care occurs, it is also the end of a meaningful relationship. Taking time to acknowledge and honour the shared time and experiences is a vital part of closure.

For my family, we are now across the transition bridge. We are looking at a landscape of fewer resources and supports. And our backpacks are full of trauma. My hope is that by sharing our experiences we can work together—families and healthcare professionals to build a system where families have a hand to hold on the other side.

FUNDING

No funding to report.

POTENTIAL CONFLICT OF INTEREST

All authors: No reported conflicts of interest. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.