We need a grown-up debate about the best way to allow people with severe and incurable brain damage to die with dignity, says York academic Celia Kitzinger. STEPHEN LEWIS reports.

THE day before Polly Kitzinger’s car crash, she met up with her sisters for a family celebration. No one could have had any inkling of what was to come next.

The following day was March 30, 2009. Polly was driving to her home in the Brecon Beacons from a conference when she was involved in a car crash.

No one is sure exactly what happened, says her sister Celia, a Professor of Sociology at the University of York.

“She was on her own in the car. There were several cars involved, but she was the only person who was badly hurt.”

Polly, who was 48 at the time, suffered severe brain damage. She was rushed unconscious to hospital. The outlook wasn’t good.

“We were told she would probably die,” Celia says.

Polly didn’t die. But in many ways, Celia thinks it might have been better if she had.

The Polly she’d like to remember is the active, vital, intelligent younger sister she grew up with. She was an experienced sailor, a keen gardener and walker. Above all, she knew her own mind and valued her independence enormously.

Polly was a mental health advocate who stood up for the rights of people with mental health conditions. But she also had a distrust of many medical procedures. She refused anti-malarial tablets before a visit to Africa, and would never go for a cervical smear.

“It was important to her to be able to act according to her own inner lights,” Celia says.

Today, that fiercely independent woman will spend the rest of her life in a specialist long-term care home.

Her life is severely limited. She is paralysed down one side and incapable of even turning over in bed by herself or pushing a call button, Celia says. “She often seems numb and withdrawn and is frequently in pain. Her occasional attempts at words are rarely intelligible. Her memory is poor and she lacks much ability to understand the world about her.”

Polly can, at times, communicate key needs, Celia says – by blinking in response to questions or pointing at a written answer. She takes pleasure from being wheeled down to the river or being spoon-fed. But the Polly before the accident would never have wanted this life for herself, Celia insists – or have been willing to face the suffering she has been through to get to this state.

And she may well live for another couple of decades at least. Physically, she is fairly healthy. “I don’t think it’s likely that she will get a cancer that will kill her, or a heart attack. So she will probably outlive the rest of us,” Celia says.

But would Polly have wanted to exist like this? Celia doesn’t believe so.

All Polly’s four sisters – Celia, Jenny, Tess and Nell – knew her attitude towards life and death. The daughters of Uwe Kitzinger, an Oxford don, and Sheila, a leading advocate for women’s rights in childbirth, they were raised as Quakers and were used to debating the larger questions of life.

“There was always lots of open, frank discussion about political and social issues, values and ethics,” Celia says. No one shied away from talking about death.

So Celia is sure: if Polly could have known that she’d end up as she is now, she would have told doctors not to try to save her after the crash.

“If it had been possible for her to be told on the day of the accident, ‘You will probably be vegetative forever, or at best minimally conscious or profoundly disabled’, she would have said ‘No, withdraw all treatment now. I don’t want to take that risk.’”

Because she didn’t write her wishes down in advance, in the form of what is known as an ‘Advance Decision’, doctors did all they could to save her life – giving her a tracheotomy, ventilating her, putting her on antibiotics and feeding her by means of artificial nutrition and hydration (ANH), which involves being fed nutrients and water through a feeding tube – first through the nose and later through a tube into the stomach.

Distressingly, Celia now finds it hard to remember Polly as she used to be. “When you try to remember the person as they were before, you can’t, because all you have before you is the person they are now.”

Polly isn’t in a permanent vegetative state (PVS) – she has regained full consciousness but with massive brain injuries. But her case illustrates some of the issues facing families whose loved ones are diagnosed as PVS.

In a Hollywood film, such a person might suddenly wake up and be restored to health. In real life, says Celia, that doesn’t happen.

The situation of such people – maybe around 5,000 in the UK – raises profound questions about the nature of life and the right to a dignified death.

As the law stands, when families or medical staff believe it is in the best interests of a PVS person to be allowed to die, they often have only one recourse: to apply for a court order to allow artificial nutrition and hydration to be withdrawn, as happened with Hillsborough victim Tony Bland.

This amounts to allowing a patient to starve to death – a prospect families often find appalling.

Celia and her sister, Jenny Kitzinger, a Professor of media and cultural studies at Cardiff University, run the Chronic Disorders of Consciousness Research Centre, which conducts research into the social, ethical and legal implications of the way society deals with people in a permanent vegetative or minimally conscious state.

In a recent paper they co-wrote for the Journal of Medical Ethics, the sisters interviewed 51 people who have relatives in such a situation.

The paper makes for painful reading (see panel). One of the key messages from the interviews was that even families who believed their loved one would not have wanted to be kept alive are horrified at the thought of allowing them to ‘starve’ to death.

“I just thought, what a horrible – what a dreadful way to live your last days,” said one interviewee, whose husband is in a permanent vegetative state.

An alternative might be for the law to be changed so that, on application and after due consideration, the courts could allow the lives of people in a permanent vegetative state to be ended quickly and humanely, for example by the administration of enough sedatives to kill.

This is an enormously difficult issue, Celia accepts. That’s why, in their paper, she and her sister don’t call outright for such a change in the law. But they do say the issue needs to be fully debated and alternative methods of ending life given consideration.

“If a court is going to take a decision to allow someone to die why not do it in a way that’s less prolonged for the patient, or, if the patient is entirely unaware, then at least less distressing for their family?” Celia says. “There must be a more merciful way of allowing people to die.”

In the meantime, in addition to calling for a public debate, Celia has a more personal crusade.

She wants to make sure as many people as possible sign Advance Decisions, setting out clearly their own wishes should they ever be left in a vegetative or minimally conscious state.

“Nobody should have to go through what my family has gone through,” she says.

“If Polly had written an Advance Decision, then as soon as they were aware of it and made sure it was binding and applicable, they [medical staff] would not have treated her and done everything they could to keep her alive. It would be an assault to give treatment to someone who had made clear they did not want it.”

 

• Celia and Jenny Kitzinger’s paper, “Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives” can be read in full online at:
jme.bmj.com/cgi/content/full/medethics-2013-101799T

To find out how to write an Advance Decision (formerly known as a Living Will) contact Compassion in Dying (0800 999 2434 or compassionindying.org.uk)

A number of events are being organised in York for Dying Awareness Week from May 12 – 18. They include:

• A series of public lectures from York university staff on issues such as the depiction of violent death on the internet and the ethics of exhibiting dead bodies in museums

• Death in the Minster – a guided walk around York Minster to explore death-related artefacts

• A guided walk in York Cemetery

• A panel meeting on how to make Advance Decisions and a free one-on-one help clinic the following day

• Music, poetry and plays about death and dying To find out more, phone 01904 434736

 

Comments made by relatives of people with PVS interviewed in Celia and Jenny Kitzinger’s paper on the prospect of allowing ANH withdrawal...

“We all thought [ANH withdrawal] was barbaric. But then being kept alive that way is barbaric. The system has to be in place where if [surgery and rehabilitation] is a failure, if it hasn’t worked, then you can help that person die with dignity.”

The mother of a PVS patient, on the prospect of withdrawing food and liquid: “We hated it. They reassured us that, you know, ‘Oh, he would be sedated, he wouldn’t feel any pain’. But we would have to sit there for up to three weeks to, basically, watch him die… There’s no way I’d ask for it. No way.”

“I couldn’t believe that [withdrawal of food and liquid] was the method. Everybody I’ve talked to has said: “there must be better ways than that in this day and age.”