Treatment withdrawal from patients in a permanent vegetative state

People in permanent vegetative states (PVS) are being failed by the system, according to researchers at Cardiff University and the University of York who found that some people are being kept alive in PVS for years against their own - and their families’ - wishes.

Professor Jenny Kitzinger and Professor Celia Kitzinger of the Cardiff-York Coma and Disorders of Consciousness Research Centre have interviewed 75 family members with catastrophically brain injured relatives and have just published a detailed case study following one individual patient, known as ‘Miss S’, who was catastrophically brain-injured in 2012.

They examined what happened to ‘Miss S’ as this situation unfolded in real-time, and identified the causes of avoidable delay in the diagnosis of PVS and court applications which finally allowed her to die almost four years later, in June 2016.

Published in the Journal of Medical Ethics, the researchers’ analysis identified a lack of access to expertise, inadequate follow up, failures in best interest decision-making and confusion about the law.

One outcome of these failings is that some patients in a permanent vegetative state are subject to ongoing life-prolonging treatment in spite of evidence that they would not want to be kept alive like this, even when their families are united in opposing treatment and their clinicians do not believe that ongoing treatment is in the patient’s best interests.

Professor Jenny Kitzinger of Cardiff University’s School of Journalism, Media and Cultural Studies and co-director of the Centre said: “Continuing life-prolonging interventions in such cases is a violation of the rights of the individual patient and is hugely traumatic for the family, and for staff too. There is an urgent need to address this situation. The case of “Miss S’ that we have outlined in our academic article, is just one example among many identified by our broader research.”

Professor Celia Kitzinger of the University of York’s Department of Sociology and co-director of the Centre added: “Giving treatment that is not in a person's best interests can be defined in law as battery - and both families and staff can certainly feel that the patient is being 'assaulted' and can become very distressed by what is going on.”

The ‘Miss S’ case is just one of a series of cases examined by the professors, who are sisters, and who themselves have personal family experience of catastrophic brain injury and a record of pioneering work into the social, legal and ethical aspects of prolonged disorders of consciousness.

The pair were approached by the mother of ‘Miss S’ in the summer of 2015 because she passionately believed her daughter should be allowed to ‘pass away with peace and dignity’ and was distraught at how her daughter was being treated. The researchers offered the family guidance about the law, the patient’s rights, and the ‘best interests’ framework that should have been followed. They also supported the family during court hearings.

Professor Jenny Kitzinger said: “I have huge admiration for the way this family fought - with great love, dedication, courage and persistence. They should never have had to fight so hard and for so long. Lessons must be learned for the future – other families are still facing the same battles, and other patients in similar situations continue to be subject to life-prolonging interventions in spite of what they would have wanted. There is a huge ethical and social cost to this injustice.”

As a result of their research, Professor Kitzinger and Kitzinger make a number of recommendations. These include ensuring patients with catastrophic brain injuries have access to skilled, person-centred care; creating a register of such patients and good follow-up services; and careful gathering of both clinical evidence and information about the patient’s wishes by those providing and funding care for them.

Professor Jenny Kitzinger explained: “It is unclear whether the current law actually means that doctors have to go to court before withdrawing a feeding tube from patients in permanent vegetative or minimally conscious states but various guidelines seem to suggest it is, and referring cases to that court has certainly been common practice. This needs to change.

“Clinical teams need to be able to enact best interest decision in a timely manner and patients should not be left in limbo, subjected to treatment they would not have wanted until a court decides otherwise. Court time should be reserved for cases where there are disputes about the right way forward.”

The paper Causes and Consequences of Delays in Treatment-Withdrawal from PVS Patients: A Case Study of Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32 is published in the Journal of Medical Ethics. It is the third of three articlesby these authors in the journal looking at end of life decision-making. Previous articles examined general family views about stopping life-prolonging interventions and what is was like going to court for the few families who do take this route.

The Cardiff-York Coma and Disorders of Consciousness Research Centre is a multi-disciplinary group of researchers exploring the cultural, ethical, legal, social and historical dimensions of the vegetative and the minimally conscious states.

Further information and support for families and practitioners working in this difficult area can be found on healthtalk.org.