Judicial reports on avoidable deaths
[Part 3: Challenges; Hanna J & Wannamaker BB]
Legal cases instigated by bereaved families in the UK, unlike in the US (Wannamaker & Hanna, 2014), are not a matter of public record, but in the experience of SUDEP Action these cases are initiated very rarely indeed. Families report being motivated by wanting answers to questions and wanting lessons, if appropriate, to be learnt; a damages settlement does not meet these needs (Kennelly & Riesel, 2002). These payments invariably contain what is known as a `gagging order’ preventing the case being discussed in public, as well as exposing the family to risk that if they continue to court they will be subject to a costs ruling.
Case: a child died overnight in hospital following drugs being withdrawn that day and whilst monitoring equipment was not supervised. The family was distressed that they had no explanations or any notification of actions taken to avoid future deaths, but reported they had little choice but to accept a private settlement.
Private litigation is less likely when there is contact between the medical team and the family shortly after the death to listen to the needs of the family. The need for appropriate support, advice and information has been recommended elsewhere (Kennelly & Riesel, 2002; NICE, 2012; RCPCH, 2013; Donner et al., 2015). Coroners and general physicians can ensure that the medical team knows of a death and that families are signposted to support as soon as possible.
In the UK, it has been the state that has been most active in instigating judicial investigations on matters of public interest and the legal test used in these cases is whether, on the balance of probabilities, a death might have been avoided.
In England and Wales under the Coroners and Justice Act 2009, coroners have authority under regulation 28 to report on avoidable deaths. Since July 2013 there have been 12 rulings where coroners have issued reports concerning the management of epilepsy by a range of services including hospital; care homes; accident and emergency and the police (Ashby et al., 2014).
Issues highlighted from deaths of people in the community included: lack of awareness and training of services including failure to refer for specialist care; inappropriate involvement of the police in responding to a seizure in the community; and a death in custody with inappropriate monitoring. There was also one coronial report drawing attention to four reported deaths possibly associated with levetiracetam.
A death in hospital included failure to diagnose and investigate. Deaths in social care services included wide-ranging failure to provide support services for people with learning disabilities. Issues included: access to emergency care; medication-taking; appointments; supervision and responding to seizures; and in one case inadequate communication and transfer of care between hospital and care services.
One key case is the death in the care of Southern Health NHS Foundation Trust of Connor Sparrowhawk who died in 2013 following a seizure in the bath. In October 2015 an inquest found neglect contributed to his death, highlighting multiple failings, particularly in relation to epilepsy risk. Connor's family had pressed successfully for the inquest to be held with a jury to examine the wider circumstances of his death. Although Connor died by drowning, the Trust originally said that his death was from natural causes and so did not need investigation. The coroner made a regulation 28 (prevention of future deaths) report after the inquest.
Prompted by the family's concerns, an independent investigation was ordered by NHS England, the agency responsible for the National Health Service in England. It found serious failures in investigating and analysing deaths of those with a learning disability in the Trust's care, missed opportunities to learn from these deaths and failure to involve families in investigation (Mazars, 2015).
The Trust was then prosecuted for systemic failings under health and safety legislation because of Connor's death and that of another vulnerable patient. In March 2018, the judge ordered the Trust to pay a fine of £2m. The Trust acknowledged during these proceedings that Connor's death following a seizure had been preventable and has now made comprehensive changes to its care of those with epilepsy (R V Southern Health NHS Foundation Trust, 2018).
In Scotland, the legal system is different and full-scale public inquiries can be initiated by the state and held by a judicial office holder where there is a public interest issue and with the purpose of making recommendations on whether preventative measures 'might' have saved a life.
The first Fatal Accident Inquiry into epilepsy investigated the sudden death of a young woman, aged 17 years (Taylor, 2002). It found a catalogue of failures for the appropriate care of the deceased including: 1) failure on the part of specialists to alert the general practitioner as to what circumstances required re-referral; 2) failure on the part of the general practitioner to prescribe appropriate doses of medication; 3) failure to re‑refer the deceased when the seizures did not stop after 2 years; 4) failure to re-refer the deceased when the intensity, form, and duration of her seizures changed as the deceased matured; and 5) failure by the medical team to discuss with the deceased’s family, the diagnosis, the attendant risks, and how these risks might be properly managed. The sheriff stated that given the association between seizures and SUDEP and the potential for control, that it was a 'short step' to the view that if the deceased had been referred for review she might not have died. He determined that the family ought to have been informed that the deceased was suffering from epilepsy, the risks of SUDEP explained, and a discussion held on how her condition might be managed. The most important recommendation was considered to be the need for a personal care plan. The sheriff suggested that all the key issues would have been addressed if a care plan, '. . . shared or otherwise' had been produced, and '. . . it might have saved her life' (Taylor, 2002).
This 2002 Inquiry, and subsequent inquiries in 2011, have also examined the issue of communication about SUDEP, with all judges reaching the same conclusion; in the vast majority of cases there should be discussion (Taylor, 2002; Duff, 2011). Full analysis can be found in "Providing information about SUDEP: the benefits and challenges" (Panelli et al., 2015).
In one of the deaths in 2011 Erin (Duff, 2011; Herald Scotland, 2011) had been considered at low risk of SUDEP; she was considered compliant with medication and was not informed about her risk. There was no medical record of non-adherence, but evidence at the Inquiry was presented that Erin was not picking up her prescriptions and not taking her medication as prescribed. As part of his 50 page judgement the judge said:
'Had Erin been referred to an epilepsy specialist nurse service (had one existed in Fife) there is, in my view, a real possibility that she would have been provided with more advice and information, informed about the risk of SUDEP and that her seizure frequency and compliance with medication would have been monitored. She might have complied better with taking her medication. Seizures might have been eliminated. She might not have succumbed to SUDEP'.
Information about risk remains a key issue for bereaved families and those supporting them.
In the 2015 case of Montgomery v Lanarkshire Health Board (Scotland) (Montgomery v Lanarkshire Health Board, 2015), the UK Supreme Court considered generally how risk should be assessed and communicated by clinicians. Before Montgomery, a clinician's duty in law was to do this in a way that was in line with a responsible body of medical opinion. By contrast, Montgomery now defines the duty by asking: would a reasonable person in the patient's position attach significance to the risk? Alternatively should the clinician be aware that this patient would attach significance to the risk?
To comply, the clinician has to understand the effect of the risk on the patient and on his or her life and decision-making, and so must think about both medical and non-medical factors. The assessment of risk is fact-sensitive and sensitive to the patient's own characteristics.
The way to do this, Montgomery says, is by having a meaningful dialogue with the patient. A clinician can't wait to be asked about risk, as a patient may not know there is anything to ask about, nor can a clinician assume that the patient does not need to know or would not attach significance to a risk. Clinicians have to consider, by discussion with their patient, what he or she would expect to be told.
The Montgomery judgment now confirms in law principles that have already evolved in practice and in guidance to clinicians from their professional bodies (General Medical Council, 2008; Nursing and Midwifery Council, 2015).
Judicial reports and recommendations are usually driven by the state rather than bereaved families. Although they take the form of reports and recommendations, they can be high profile and have significant impact and influence. Most notably, funding for research and improvements in epilepsy services have followed in the aftermath of all the inquiries in Scotland and a new SIGN (Scottish Intercollegiate Guidelines Network) guideline has included a chapter on SUDEP for the first time (SIGN, 2015).
Julia Stirling, SUDEP Action, UK
Jane Hanna, Chief Executive, SUDEP Action, UK
Braxton B Wannamaker, Clinical Professor, Medical University of S. Carolina & Veterans Admin. Med. Centre, Charleston, SC, USA
How to cite:
Stirling J, Hanna J & Wannamaker BB. Judicial reports on avoidable deaths. In: Hanna J, Panelli R, Jeffs T, editors. Continuing the global conversation [online]. SUDEP Action & SUDEP Aware; 2019 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.