Patients with chronic and long-term illnesses may require additional emotional and psychological support from their health practitioners, particularly when they transition from childhood to adulthood and transfer to adult patient care. Health practitioners and facilities should consider Mental Health First Aid to scaffold the psychological health of young survivors of congenital illness. These were among the recommendations by Coroner Spanos of the Coroners Court of Victoria into the death of ALJW.
Mr ALJW (the patient), the youngest of three children, was born with a complex congenital heart disease. As an infant and child, he underwent bi-directional cavo-pulmonary shunt surgery and an extra-cardiac Fontan procedure. He required lifetime treatment and monitoring. His medical condition caused or contributed to intermittent depression.
The patient was under the care and management of the Royal Children’s Hospital (RCH) in Melbourne. Throughout childhood and adolescence, he attended medical appointments with the support of family members. At age 14, the patient was provided with prognostic information at RCH that “painted a bleak picture of reduced career prospects, ill-health and sudden and early death.” Shortly after receiving this news, he attempted an overdose. His parents arranged for him to receive psychological counselling. In the context of his school peer group, he experimented with cannabis and other drugs. He received further psychological support through Orygen Youth Mental Health Services, changed schools and developed an interest in pursuing a career in journalism. From late 2011, he commenced a 12-month cadetship in South Africa.
The patient’s transfer of care from RCH to the Royal Melbourne Hospital’s (RMH) Adult Congenital Health Disease Service was commenced by letter dated 14 October 2011, followed by another letter of introduction. However, due to the patient planning to be overseas for a year, the ﬁrst appointment at RMH was provisionally scheduled for January 2013.
In 2012, following his internship, the patient relocated to London, where one of his sisters lived. He returned to Australia in November 2013 and resumed residence at the family home.6 In December 2013, the patient formed a relationship with GJ, whom he had known through school. He disclosed to her that whilst overseas, he had experimented with illicit drugs and twice attempted suicide.
In early July 2014, the patient and GJ broke up for some weeks. During that time,he underwent a transthoracic echocardiogram in advance of cardiac review at RMH and consulted a general practitioner to request a new prescription for his regular anticoagulation therapy. To his general practitioner, he reported recently worsening feelings of depression and a recent attempt at self-harm by taking an overdose of drugs, but denied current suicidal ideation. The general practitioner referred the patient to a psychologist for counselling. The patient attended three psychological counselling sessions, admitted infrequent suicidal thoughts, but denied any plans or intent to suicide.
In early August 2014, the patient and GJ reconciled. He disclosed to her that he had felt suicidal when they were apart. When contacted on 4 August 2014 to schedule his next psychological counselling session, he declined to make a fourth psychology appointment.
On 19 August 2014, the patient attended his ﬁrst cardiac review as an adult. He attended this review alone, having declined his parents’ offer to accompany him. The patient was considered by his doctors to be stable from a cardiac perspective and when asked by the patient about his life expectancy, the clinicians said that they were not concerned about his short- or medium term prognosis. However, in relation to his long-term prognosis, the doctors advised him that his prospects were uncertain because of little long-term data about Fontan surgery patients, which only commenced in the 1970s, so the oldest patients are now only in their 40s. The doctors did however indicate that they expected better results from the newer extra-cardiac Fontan procedure that the patient had undergone. Overall, the doctors considered that the patient had understood this information and did not appear depressed, so he was not referred to support services and was scheduled for review in 12 months’ time.
Based on what he relayed to his parents a short time later, the patient developed an understanding and interpretation of the prognosis to indicate that he was likely to become ill in his 30s and die in his 40s. The patient’s parents reassured him by referring to likely medical advances that would assist him and noted that he seemed to accept the information and did not appear suicidal or depressed.
The patient’s parents travelled to London on 29 August 2014 to attend a family wedding, but the patient chose to remain in Victoria. He and GJ ended their relationship on 7 September 2014. On 8 September, the patient spoke with his sister who was due to travel to London that evening, and she formed the impression that he seemed sad but not depressed. The patient corresponded by email with his parents on 15 September, for the last time. He took his own life at the family’s Newport home between 15 and 21 September 2014, dying from the combined effects of heroin toxicity and plastic bag asphyxia. He was only 21 at the time of his death.
Investigation without inquest
As an unexpected death, the matter was investigated by Coroner Spanos but did not proceed to an inquest hearing. The patient’s family wrote to the Coroner in 2015 and expressed concerns about how the transition from paediatric to adult care, and prognostic communications, were managed. Coroner Spanos found that the combined effects of heroin toxicity and plastic bag asphyxia caused the patient’s death and observed that the patient’s perception of his prognosis was a stressor.
The Coroner recognised that Fontan surgery is relatively new. The extra-cardiac conduit procedure (which the patient underwent) is a technique ﬁrst used in the 1990s, meaning, most who have undergone the procedure in Australia are younger than 18. The Coroner noted that as a result, the importance and continuing relevance of adequate transition support for the transfer of cardiac patients to adult health services was obvious.
The Coroner did note that, in 2014 and 2015, RMH held a Fontan Education Day and since 2014, together with RCH, it has convened an Annual Cardiology Transition Forum. Patients transitioning from the children’s hospital in the following 12 months and their families are invited to attend this transition forum, together with directors of cardiology and cardiac liaison/ training nurses from both hospitals. These forums were not available at the time the patient took his own life.
The Coroner observed that while prognostic data on Fontan patients have been collected:
In the last decade or so, however, researchers have started to undertake studies of Fontan patients’ quality of life and, in particular, assessment of the relationship between congenital cardiac disease,mental health and emotional wellbeing.
Early indications are a higher incidence of depressed mood and anxiety disorders among adolescent and adult Fontan patients, compared to age-matched peers who do not have a cardiac condition. These and other results:
… highlight that clinicians should be alert for emotional difficulties — and the need for psychological intervention — among adult survivors of congenital heart disease and Fontan patients, even among those seemingly emotionally well-adjusted[,]
as well as the need for all clinicians to “treat Fontan patients holistically assessing both physical symptoms and psychosocial concerns serially”. Of interest, the Coroner also noted that the Australian Commission on Safety and Quality in Health Care’s revision of the National Safety and Quality Health Service Standards “requires health services to have in place policies, procedures and training to manage the risks associated with recognising and responding to acute deterioration, including deterioration of mental health.”
Coroner Spanos made four recommendations:
1. That when transferring patients between RCH and RMH, health practitioners at RCH formally refer the patient to a social worker to provide transitional support until after the ﬁrst appointment at the RMH.
2. That RCH and RMH introduce a routine screening tool to assess a young patient’s resilience and capacity for transition between the children’s and adult’s health services.
3. That congenital liaison nurses undergo mental health training to improve their ability to identify and respond to their patients’mental health issues, such as Mental Health First Aid training.
4. That both hospitals undertake a review of their care pathways and systems to ensure a focus on the psychological and emotional impacts of Fontan surgery and its implications for patients’quality of life.
The introduction of Mental Health First Aid training for the liaison nurses, who are an essential part of the multidisciplinary team caring for young people who will begin to attend medical appointments as adults, is a
reminder of how appropriate clinical skills include an appreciation of the psychological and emotional risk factors and how to manage them. Although suicidal action can occur swiftly, and there may be few warning signs, young people experiencing congenital illness and who have survived are a vulnerable patient cohort.Apart from the beneﬁts for the patients to see their psychological wellbeing monitored, the delivery of Mental Health First Aid training to a wide group of clinical and non-clinical personnel can be a useful skills-based exercise for health facilities and support groups.
1. Coroners Court (Vic) Finding into death without inquest: ALJW (21 September 2017) www.coronerscourt.vic.gov.au/ resources/ccc6102e-5384-4588-b3dc-2136b23f09db/ aljw_redacted_486814.pdf.
2. Above, para 1.
3. Above n 1, para 4.
4. Above n 1, para 5.
5. Above n 1, para 7.
6. Above n 1, para 10.
7. Above n 1, para 11.
8. Above n 1, paras 12-14.
9. Above n 1, para 16.
10. Above n 1, para 19.
11. Above n 1, para 23.
12. Above n 1, para 24.
13. Above n 1, para 25.
14. Above n 1, paras 26-28.
15. Around 1 in 20 reported deaths proceeds to an inquest, more than half being discretionary inquests: see eg SWalter, LBugeja, M Spittal and D Studdert “Factors predicting coroners’ decisions to hold discretionary inquests” (2012) 184(5) Canadian Medical Association Journal 521.
16. Above n 1, para 35.
17. Above n 1, para 49.
18. Above n 1, comment 1.
19. Above n 1, para 47.
20. Above n 1, para 45.
21. Above n 1, comment 3, pursuant to s 67(3) of the Coroners Act 2008 (Vic).
22. Above n 1, comment 4.
23. Above n 1, comment 5.
24. Australian Commission on Safety and Quality in Health Care National Safety and Quality Health Service Standards (November 2017) www.safetyandquality.gov.au/wp-content/ uploads/2017/12/National-Safety-and-Quality-Health-ServiceStandards-second-edition.pdf.
25. Above n 1, comment 6.
26. Above n 1, recommendations 1-4.