A landmark judgment in the Court of Protection recently found that artificial nutrition and hydration can be withdrawn from patients in permanent vegetative states and minimally conscious states without requiring court approval.


It’s a judgment that “made my day”, says Jean Simpson who describes what happened to her daughter once the Court of Protection was involved as a “distressing fiasco”.

Jean’s daughter, 38-year-old Jodie Simpson, collapsed at her home in August 2012.
 She had been on a ‘weekend bender’ and overdosed. Her brother found her unconscious and called an ambulance.

After being treated in hospital for 10 weeks, it was clear that she had suffered irreversible brain damage.

Jodie never regained consciousness. Jodie’s situation was a tragedy; but
 for her mother, a retired nurse, the situation was made much worse by what followed.

Although she was permanently unconscious, Jodie was given medical treatments to maintain her body for nearly four years.

Only after the court authorised treatment withdrawal in May 2016 (Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32) was Jodie finally ‘set free’ on 4 June 2016.

For years, despite the treating clinicians agreeing with Jean that it was not in Jodie’s best interests for treatment to be continued, she battled with misinformation about what was required for the court application, failures of advance planning and inexplicable 
legal delays.

Doctors and lawyers floundered around in an area of medico-legal practice made unnecessarily complex by the belief that cases like Jodie’s must be referred to the Court of Protection.

The final straw came when, despite the best efforts of the judges involved to expedite the ruling, the Official Solicitor decided to instruct another (third) expert who insisted on further diagnostic tests.

These merely reconfirmed what the other two experts had said all along – that Jodie was in a vegetative state. Unfortunately, Jodie’s story is all too common.

Nobody knows exactly how many vegetative patients are maintained long-term in UK care homes, but estimates suggest somewhere upwards of 4,000.

There are approximately 12,000 minimally conscious patients. Only around 100 applications for treatment-withdrawal from these patients have been heard by the courts in the last 25 years. Most are simply given treatment indefinitely.

There are many reasons why futile and unwanted treatment continues to be delivered, but one is that the court acts as an obstacle and deterrent. As Mr Justice Jackson said in his recent landmark judgment:

“A mandatory litigation requirement may deflect clinicians and families from making true best interests decisions and in some cases lead to inappropriate treatment continuing by default.” (M v A Hospital [2017] EWCOP19)

My sister Jenny and I founded the Coma and Disorders of Consciousness Research Centre (CDOC) in 2009 after our other sister, Polly, suffered a catastrophic brain injury in a car accident.

It has since interviewed 85 people on 
their experiences of having a relative in a vegetative or minimally conscious state.

We’ve also supported more than a dozen families, including Jean Simpson, on their journey through the court system – from 
the process of assembling evidence of diagnosis and the patient’s wishes, to the court hearings, through the treatment- withdrawal process, and up to and beyond the subsequent death of their relative.

We’ve witnessed at first-hand how painful, messy, protracted, expensive and unnecessary this litigation can be – and the harm it can cause to patients, families and carers.

The only medical treatment routinely provided for vegetative and minimally conscious patients is artificial nutrition and hydration.

Withdrawing it will definitely 
be followed by death. Many people we interviewed said they found the idea of withdrawing a feeding tube particularly distressing. Some said it was “cruel”, “barbaric”, or “you wouldn’t do it to a dog”.

The symbolic power of feeding, together with the requirement for a court application to withdraw a feeding tube, explains why so many of these patients are maintained for so long.

Law and practice

The first time an English court considered withdrawing a feeding tube from someone in a vegetative state was in the early 1990s in the aftermath of the Hillsborough disaster.

Tony Bland was an 18-year-old Liverpool supporter caught up in the crush. He suffered broken ribs and punctured lungs which interrupted the oxygen supply to his brain.

He survived with severe brain damage in a vegetative state.
 Convinced that their son would not want to continue to be maintained in this condition, his parents supported a series of court hearings.

They battled all the way to what is now known as the Supreme Court – seeking to allow doctors to withdraw artificial nutrition and hydration without fear of being prosecuted for murder.

The judges decided that withdrawal was lawful, but it was also agreed that “until a body of experience and practice has been built up”, future cases should be heard by the courts (Lord Keith, Airedale NHS Trust v Bland [1993] AC 789).

Until recently it has been widely believed that this part of the ruling still applies to withdrawal of feeding tubes from patients in the vegetative – and now also in the minimally conscious – state.

Even when families and doctors are all in agreement, as in the case of Jodie Simpson, cases have still been referred to the court, causing enormous expense as well as delay.

It was eight months after Jodie’s collapse,
 in April 2013, that Jean wrote to the doctors asking if her daughter could be allowed to “pass away with peace and dignity”.

But treatment wasn’t withdrawn for
 another three years and two months,
 during which Jodie received medical treatment that was futile, unwanted and 
not in her best interests.

Jean recalls: “It was absolute torture to see what was being done to Jodie on a daily basis. The children visited less and less – they could no longer face seeing their mum like that.

“First the medical side was dithering and then the solicitors joined in. It was quite different from other end-of-life cases I’d seen as a nurse. It was as if they were scared of the legalities involved.”

Unlike her last years in the nursing home, Jodie’s death in the hospice was peaceful.

All the families who’ve described their loved ones passing away after court-authorised withdrawal of a feeding tube have told us it was a good death for the patient, despite the ‘burden of witness’ they faced.

In making his landmark judgment, Judge Jackson based his decision on the law as set out in the Mental Capacity Act 2005.

He pointed out that if doctors make decisions, including treatment withdrawal decisions, “in the best interests” of incapacitated patients they are protected against liability by section 5 of the Act, so do not require the additional security of a declaration from the court.

He also drew on the Supreme Court decision in Aintree which clarified that: “The fundamental question is whether it is in the patient’s best interests, and therefore lawful, to give the treatment, not whether it is lawful to withhold it.” (Lady Hale in Aintree University Hospitals NHS Foundation Trust v James [2013]).

It is very common for life-prolonging treatments – including feeding tubes – to be withdrawn in emergency rooms, care homes and hospices across the country when
these treatments are futile, burdensome, unwanted or not in the patient’s best interests.

A judge in every healthcare unit would be needed if judicial approval were required for all these decisions.

Of course, court hearings are not expected as a matter of routine, and there is no
good reason for patients in vegetative or minimally conscious states to be singled
 out for special judicial scrutiny.

The 
court is always available where there is disagreement or where it is felt that, for some other reason, an application should be made.

In the judge’s view, however, this “will only arise in rare cases”.
 Despite the new judgment, lawyers are likely to remain cautious about advising doctors
 to withdraw treatment from this group of patients without applying to court.

Advice 
is currently contradictory. Many formal guidelines and other documents with legal standing still advise that a court application is necessary. Crucially, the Ministry of Justice has not yet withdrawn its claim that such cases should go to court (as stated in Court of Protection Practice Direction 9E).

A decision was made in July to recommend removing this practice direction, and it is very likely be deleted by the end of this year.

Clear and consistent guidance is needed to give clinicians certainty about where they stand in respect of giving or withholding treatment.

Abolishing the expectation that cases should go to court will help to ensure that patients’ best interests are considered sooner and that futile and unwanted treatment is withdrawn without delay – but it will not solve all the problems.

Improving care

The CDOC convened a working party composed of clinicians, lawyers, researchers and policy makers, to explore concerns about current treatment of vegetative and minimally conscious patients, and consider how best to improve care.

Often these patients are simply lost in the system, discharged into long-term care homes where they may receive excellent physical care but without any consideration of long-term goals of treatment.

We need a national register so that they don’t simply fall off the radar.

Early diagnoses received from recognised centres of excellence often ‘stick’ to patients years later, even though their level of consciousness may by then have increased or decreased.

We need a system in place for periodic reassessment of their clinical situation.

In the first few years after brain injury,
 a patient’s family often believes their 
loved one is a fighter and would want all available treatment.

This belief continues to govern decisions many years later, long after families have lost hope for recovery.

We need to review treatment decisions more regularly with families and perhaps adopt time-limited treatment trials which necessitate review at a fixed time.

Questions about whether tube feeding is in the patient’s best interests are rarely raised, leaving many families wrongly believing that artificial nutrition and hydration 
is a form of basic care which cannot be withdrawn.

This treatment, like any other, should routinely be included in best interests decision-making.

The law makes a clear distinction between euthanasia – an act of deliberate killing, such as injecting someone with a lethal drug with the intention of causing death – and treatment-withdrawal.

Yet not every clinician recognises or agrees with this distinction. I recently attended a best interests meeting at which two consultants refused even to consider withdrawing a feeding tube from a profoundly brain-injured patient who was showing signs of improvement.

Despite acknowledging that recovery 
to a quality of life he’d have considered worthwhile was unlikely, and despite the strong views of his wife and daughters that he would refuse treatment if he could,
 the consultants described treatment withdrawal as “unethical”.

We need guidelines for clinicians with conscientious objections to treatment withdrawal that ensure they pass patients on to the care of others, if their own values preclude certain options.

The pervasive problem is that these patients are given treatments, especially artificial nutrition and hydration, that is 
not in their best interests.

Senior clinician Professor Derick Wade proposed earlier this year that commissioners – the funders and purchasers of treatment – should pay providers only if treatment is documented as being in the patient’s best interests
in accordance with the law.

Using the economics of healthcare to ensure legal compliance could transform treatment decision-making.
 Solving such problems requires a change 
in the culture of long-term care for vegetative and minimally conscious patients.

The British Medical Association, the Royal College of Physicians and other stakeholders have been invited by the Court of Protection to consult widely about what is needed to ensure the best care for this vulnerable patient group and to issue new guidelines.

For Jean Simpson, “it is a comfort to know that our experience has made a small contribution to changes that will ease the emotional burden a little for families in the future who end up in this devastating situation”.

Professor Celia Kitzinger is co-founder and co-director of the Coma and Disorders of Consciousness Research Centre alongside her sister, Professor Jenny Kitzinger of Cardiff University. The multi-disciplinary research centre has published numerous articles and contributed evidence to the Law Commission and House of Lords Select Committee on the Mental Capacity Act. Follow Celia on Twitter: @KitzingerCelia.


Learn more about prolonged disorders of consciousness

A new multi-media learning resource about prolonged disorders of consciousness is now available online.

It was designed primarily for allied health professionals and their students, but also offers valuable insights for a wide range of other staff.

The resource includes presentations and video discussions with staff and patients’ families, as well as self- assessment quizzes and reflective activities for interactive learning. Topics covered include:

• Defining the vegetative and minimally conscious state

• Core allied health professional interventions

• Staff-family communication

• Cultural representation of ‘coma’

• Navigating ethical and legal issues – including the implications of recent court judgments.

The undergraduate version is available now, with the staff version being launched in December. Both are
freely available to individuals and organisations at www.cdoc.org.uk/training


Date for your diary

Professor Celia Kitzinger is delivering a seminar to discuss the implications of the judgment in M v A Hospital in Newcastle upon Tyne on Thursday, October 26 at 6pm.

The event, which is free to attend, will be held at law firm Sintons, the Cube, Barrack Road, NE4 6DB. To book a place, contact peter.jennings@sintons.co.uk.

Resources

Kitzinger C, Kitzinger J. Family experiences of vegetative and minimally conscious states, healthtalk module

Kitzinger C, Kitzinger J. The ‘window of opportunity’ for death after severe brain injury:

Family experiences. Sociol Health Illn. 2013;35:1095-1112.

Kitzinger C, Kitzinger J. Withdrawing artificial nutrition and hydration from minimally

conscious and vegetative patients: Family perspectives. J Med Ethics 2015;51:157-160.

Kitzinger C, Kitzinger J. Court applications for withdrawal of artificial nutrition and

hydration from patients in a permanent vegetative state: Family experiences. J Med Ethics 2016a;42:11-17.

Kitzinger, J, Kitzinger, C. 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]b EWCOP 3. J Med Ethics 2017;43:459-468.

Kitzinger, J, Kitzinger, C, Cowley, J. When ‘sanctity of life’ and ‘self-determination’ clash:

Briggs v Briggs [2016] EWCOP53 – Implications for policy and practice. J Med Ethics

2017;43:446-449.

Royal College of Physicians. Prolonged disorders of consciousness: national clinical guidelines. London:RCP.

Wade, D. Using best interests meetings for people in a prolonged disorder of consciousness to improve clinical and ethical management Journal of Medical Ethics Published Online First: September 14 th 2017: doi:10.1136/ medethics-2017- 104244