Pivotal encounters with two leukaemic adolescents—the impact on a paediatric trainee

Introduction

During ones formative years acquiring knowledge and skills as one strives towards achieving consultant status, certain clinical encounters leave a lasting impression. End-of-life decisions encompass evolving knowledge based on advances in treatment and skill sets, reflections on the doctor/patient relationship, leading beyond knowledge to wisdom (1,2). The impact of life/death decisions on young trainees may be profound, extending beyond the immediate requirements of reaching a diagnosis and instituting management. Two adolescents with acute lymphatic leukaemia (ALL) come to mind, one at his end stage the other commencing treatment. The attending consultant paediatrician gave an optimistic prognosis for the first which raised concerns in the trainee. The parents of the second who seemed more concerned about their personal inconvenience rather than their daughter’s life-threatening illness aroused in the trainee probable inappropriate anger towards them.

The aim of this paper is to reflect on these critical encounters in the context of end-of-life management and how they impacted on the trainee’s own career trajectory.

Vignette 1

“A” aged 12 years was at the terminal stage of treatment for ALL which in the 1960s carried close to 100% mortality*. At the morning round “A” was observed to be drowsy though with little pain. His concerned parents patiently awaited the arrival of the consultant paediatrician. They timidly asked of him, “How is our son doing?”. The consultant in his cheery manner replied, “He is doing very well”. Grateful and relieved, the parents went for breakfast before returning to their son’s bedside. A few hours later their son was dead. This single encounter with a dying adolescent and the observation how a senior consultant had chosen to answer the parents’ question, raised concern for the trainee as to whether it was inappropriate to continue as he had been taught and develop an approach of unrealistic optimism.

Comment

The consultant may have seen himself as providing the parents hope and reassurance, if only for a few hours. He chose not to re-state how ill their son was and what little he could do to alter his prognosis. The consultant may have felt the need to distance himself from the reality of the adolescent’s imminent death. If so, his denial or disconnection was a coping strategy. The consequence of medically prescribed false hope may be more devastating than confirming the reality (3). An alternative approach might instead offer compassion and comfort to the parents faced with impending unbearable loss.

A blend of hopeful honesty rather than ‘false hope’ is a wiser approach to avoid a breach of trust in the doctor/patient relationship, as evidenced from counselling parents of infants with serious cardiac anomalies, thereby reinforcing the trainee’s reality-based approach (4). Even under extreme time/emotional pressures in life-death situations, our own fears for loss of our patient/child, influence us as people (5). Medical decision making should take into account these fears and unpredictable changes, to learn how fear links to stress and trauma, rather than collude with false hope to lessen reality’s impact (2). If parents seem too fragile or vulnerable to bear their imminent loss, a caring/compassionate approach has the doctor explaining that everything possible has been tried but, short of a miracle, their child is dying. Brindley and Morgan suggest “many doctors, nurses, patients, and families overdo a third “D word” (the others being ‘dead’ and ‘dying’)—denial: In this biotechnologically obsessed world, we are increasingly less able to countenance a ‘natural death’, or to understand what truly matters in our final days.” (3).

Considerable literature has since evolved as to how best to provide prognostic disclosures especially for children with malignancy (6,7). That development has become increasingly relevant as the prognosis continues to improve, especially for childhood leukaemia with now a 5-year survival of about 90% (8).

Vignette 2

“B” aged 13 years, arrived from a rural centre with a provisional diagnosis of ALL. Her findings were consistent with that diagnosis. Further elucidation was required to guide the limited therapeutic options then available in the 1960s with a mortality close to 100%*. That awareness weighed heavily on the trainee admitting the adolescent, concerned that despite every effort and the suffering she was to experience, her outlook was grim. Her painful journey was just beginning. She would require multiple investigations, prescribed medications with limited therapeutic effectiveness then available, and the almost inevitable downward spiral towards her ultimate death.

The distressed trainee prepared to impart much of that information to the parents. Surprisingly they seemed more concerned about their personal inconveniences—organizing parking for their car, finding accommodation, issues with father’s work etc., hardly enquiring about their daughter, her treatment or prognosis. The parents’ apparent “non-concern” dismayed the trainee. He asked his consultant to take over. Shortly after the trainee took leave with a flare up of an earlier illness.

Comment

The trainee’s reactions included barely suppressed anger towards the parents which he considered was probably inappropriate. A basic principle in end-of-life considerations is both the patient/family and the carer/doctor face an existential—and potentially—out-of-control crisis which may trigger unmanageable stress leading to panic in early career professionals (1). To ward off such an impending crisis the family/doctor need employ psychological measures to distance themselves from the triggering event. Such defensive measures vary based on the personalities and earlier coping strategies to life stresses and relational trauma (9). Kolacz and Porges observed, “Adult’s autonomic functioning is influenced by their own history, which has implications for social interactions.” (10).

Psychology backed by neuroscience of trauma suggest how our ‘fight, flight, freeze and faint’ responses regulate our survival in perceived life-threatening moments through the autonomic nervous system, mediating and regulating via the polyvagal system (10,11). The parents’ apparent concern about their own well-being while possibly indicative of them being uncaring, was more likely their way of coping with their pain and anguish given the likelihood of losing their daughter. The parents sensed the life-threatening danger for their daughter. Their automatic self-protection against anguish may have triggered their distancing—dissociation—style of coping (12) ?

It remains unclear as to what issues impacted on the trainee’s own life experiences which made him ill, with a flare up of his previous psychosomatic disorder. Stress has been associated with weaker vagal regulation (13) and a heightened sympathetic response (14). The alteration in autonomic activity can disrupt homeostatic function (15), and manifest in physical symptoms in visceral organs (16). The intensity and specificity of the life-death clinical encounter, through the mechanism of vicarious trauma, defined as the indirect exposure to trauma through a firsthand account or narrative of a traumatic event (17), probably triggered the overtired, overworked trainee’s own vulnerability that cascaded into somatic and/or psychological symptoms (16). These mechanisms cascade through synchronized shifts in the polyvagal—ventral, dorsal vagal and sympathetic pathways, which may also offer avenues for effective intervention, titrating stress back to tolerable levels through each person’s ‘window of tolerance’ (11).

These two pivotal encounters and the resultant impact on the young trainee that led to his withdrawal from the care of a sick patient followed by a temporary absence from his hospital duties, brought about a realization of how ill-equipped he was in engaging and managing stressful situations in child care, especially if associated with a life-threatening disorder. That led to his lifelong journey to improve both his knowledge and skills in understanding and in turn dealing more empathically when faced with such situations.

At the time there was little input within the training program with respect to the psychological aspects of paediatric care. That led him to seek out and attend educational lectures/seminars which were mainly geared towards those training to be child physiatrists. He was also instrumental in the setting up of a Balint group of like-minded paediatricians led by a senior consultant child psychiatrist, discussing the management of problematic issues that the paediatricians were seeing within their daily practice.

In addition, the trainee arranged to spend time in the Department of Psychiatry at the hospital where he was a junior consultant, being exposed to child play therapy with supervision from a child therapist and the director of the department. That subsequently led to his formal training as a child and adolescent psychoanalytic psychotherapist which required long term supervision as he developed skills as a therapist. Multiple publications documented this invaluable experience for when working as a therapist he needed to evolve from a “paediatrician whose approach to his child patient is reassuring, supportive, directive and focused on strengthening defenses, to a psychoanalytic orientated therapist who urged confrontation with unresolved problems, is supportive of struggle and is usually not so directive because he needs to be a transference object” (18).

The insights so gained translated to his day-to-day management of patients, all directed towards improving his communication with children and to acquire a better understanding the complexity of family dynamics (19). In parallel, there was a need for self-discovery through personal therapy to better understand his own responses to what was being encountered within the clinical settings (20).

This growing insight and a greater capacity to deal with stressful clinical scenarios, allowed the trainee, then a young consultant to view all paediatric patients through a psychologically orientated lens. In addition he was able to develop, supervise and mentor medical and allied students and clinicians in multiple studies working within a multidisciplinary setting. This psychologically orientated approach to patient care was then translated from his general paediatric practice to that of his subspecialty of cardiology (4). That again also facilitated the setting up of many multidisciplinary studies culminating in the award of a higher doctorate based on his published work from his initial paper as a medical student where he highlighted the need for further education in the psychological aspects of clinical care (21), to the publication of multiple papers related to the psychosocial aspects of congenital heart disease, his thesis being dedicated to the mothers who so diligently cared for and advocated on behalf of their affected offspring (22).

Conclusions

There still remains a need to protect trainees’ exposure to stressful patient encounters as they acquire experience and hopefully wisdom (1,2). Exposure to painful doctor/patient relationships is integral to the practice of ethically informed medicine—first, do no harm. ‘Harm’ extends beyond the patient. Harm includes the staff exposed to unrecognized vicarious trauma, moral injury, compassion fatigue and the delayed impact of secondary trauma, especially in the post-coronavirus disease (COVID) pandemic era. Failure to recognize such risks increases iatrogenic harm. Active intervention and prevention focused on staff well-being, reduces these risks, aided by educational simulated endeavours to raise one’s resilience in facing stressful clinical situations (23). Rising suicide rates, especially in bright, conscientious female doctors, calls for urgent intervention and prevention policies (1,2).

Childhood leukaemia outcomes have substantially improved. Many childhood disorders still have poor outcomes emphasizing the need for ongoing education and management of this stressful aspect of paediatric care. While the trainee’s encounter with the two leukaemic adolescents were brief, they had a profound and enduring effect first in immediately highlighting the need for more compassionate face to face doctor/patient communication, and secondly a more long term impact on the trainee’s subsequent career. The encounters served as a pivotal point in his own training faced by the necessity to confront management of authentic raw emotions elicited by this all too human experience in his professional setting.

He sought further training to gain a deeper understanding of his own instinctive resistances, to engage deeply with his initial avoidance, eventually opening a new career pathway. That resulted nor only in his personal journey into psychoanalytic training but also facilitating institutional changes with the development of a Balint group at the hospital. By bridging the reality and complexity of end-of-life conversations, his personal growth contributed to multiple studies related to clarifying complex clinical paediatric decision making, and barriers to doctor/patient communication.

Other paediatricians have chosen different pathways, all with the aim of improving the effectiveness of the care they provide to their child patients and their families. Developing a psychologically orientated approach both for the general paediatricians and hopefully also extending to the paediatric subspecialists will be a boon to all.

Acknowledgments

None.

Footnote

Peer Review File: Available at https://pm.amegroups.com/article/view/10.21037/pm-25-27/prf

Funding: None.

Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://pm.amegroups.com/article/view/10.21037/pm-25-27/coif). S.M. serves as an unpaid editorial board member of Pediatric Medicine from October 2024 to September 2026. The other author has no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. Brief sentinel events are described that occurred many years ago and which were deemed not to require ethics approval.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

^*Professor Henry Ekert, Consultant Paediatric Haematologist and Former Director Clinical Haematology and Oncology, The Royal Children’s Hospital Melbourne—Personal Communication.

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