Celia Kitzinger and Jenny Kitzinger, Co-Directors of the Coma and Disorders of Consciousness Research Centre at Cardiff University, UK, reflect on the new court ruling.
The UK Supreme Court ruled in July 2018 that it is not mandatory to apply to court before withdrawing life-sustaining treatments (in particular, clinically assisted nutrition and hydration [CANH]) from people in prolonged disorders of consciousness (vegetative or minimally conscious states). Doctors can now make decisions about CANH for these patients (as for all others) in accordance with the law and professional guidelines. The court is still available where there is doubt about the patient’s best interests or disagreement between families and doctors.
We welcome the Supreme Court ruling. Our research shows that singling out this group of patients for court scrutiny led to widespread failures to consider their best interests – with treatment often continuing by default, or with unnecessary delays before withdrawal causing considerable distress to families.
But one useful aspect of the court process was approval of a palliative care plan, structured in accordance with National Clinical Guidelines. These Guidelines (endorsed by the Association for Palliative Medicine) emphasize the need for collaboration between the palliative care and neurorehabilitation teams, set out an example of a detailed regimen for staged escalation of sedation and analgesia, and outline the support needed for families (and staff). Where these Guidelines are followed, families report “peaceful” or “good” deaths.
Will these deaths be as well managed without the requirement for the court to approve a palliative care package?
We recently interviewed someone whose wife (in a vegetative state) died after CANH withdrawal without judicial review – as will normally now be the case. He expressed concern about staff understanding of the process, and what he considered less than adequate levels of pain relief and sedation. He was very distressed by what he witnessed in the last few hours of his wife’s dying. This contrasts with most of our interview reports of deaths after court hearings.
Palliative care for people in prolonged disorders of consciousness [PDOC] has some distinctive features.
Unlike many other end-of-life patients, PDOC patients will not die for a long time (perhaps decades) if CANH is continued.
Physiologically, these patients are often younger, physically robust, and have no co-morbidities. When CANH is withdrawn, dying can take much longer than clinicians are accustomed to. If hydration is provided even in small quantities – e.g. via fluids delivered in conjunction with medications – the dying process can be very protracted.
The Guidelines recommend proactive planning for use of IV medications to deal with apparent signs of suffering, which may sometimes escalate rapidly and unpredictably.
It is likely there will be an increase in end-of-life care needed for PDOC patients over the year ahead, as the backlog of best interests decision-making is implemented following the Supreme Court judgment. It is vital that staff consult the Guidelines, consider information from the patient’s family and previous care team, and access appropriate specialist expertise.
Please tell us about your experiences
Finally, we’d be interested to hear from colleagues internationally (where court hearings have never been the norm), about their experience of deaths of PDOC patients. Please contact us at the links below, or leave a comment on the blog.
Links and resources
- Contact Jenny Kitzinger by email.
- Contact Celia Kitzinger by email.
- Read Jenny and Celia’s previous post about CANH withdrawal on the EAPC blog.
- The Prolonged Disorders of Consciousness National Clinical Guidelines are available here.
- For more information about the work of the Coma and Disorders of Consciousness Research Centre, including online learning modules, check out our website and follow us on Twitter @CDOCuk
BREAKING NEWS … #EAPC2019 – ABSTRACT DEADLINE EXTENDED TO 31 OCTOBER!
Do you want to help shape the conference programme for #EAPC2019? Then please submit your abstract online now. Abstracts can be submitted in two categories, either as an oral or as a poster presentation. Deadline for abstract submission: 31 October 2018. For more information on the congress, and to register, please visit the congress website.