Some families would consider terminal sedation for kin in a permanent vegetative state

January 15, 2014

The families of some very severely brain injured patients believe that once all treatment options are exhausted, allowing their relatives to die with the help of terminal sedation would be a humane and compassionate option, research carried out by the University of York and Cardiff University has revealed.

The study, based on interviews with the families of patients in a vegetative or minimally conscious state, found some relatives believed euthanasia by sedation would be preferable to withholding or withdrawing treatment.

Currently, the withdrawal of treatment such as artificial nutrition and hydration is the only legal method guaranteed to allow death in patients in a vegetative state.

The research paper Withdrawing Artificial Nutrition and Hydration from Minimally Conscious and Vegetative Patients: Family Perspectives is published today (15 January 2014) in the Journal of Medical Ethics.

The study was carried out by Professor Celia Kitzinger from the Department of Sociology at York and Professor Jenny Kitzinger, at the School of Journalism, Media and Cultural Studies at Cardiff University. Celia Kitzinger and Jenny Kitzinger, who are sisters, are co-directors of the York-Cardiff Chronic Disorders of Consciousness Research Centre (CDoC) which explores the social and ethical challenges of the vegetative and minimally conscious state.

The researchers' sister, Polly, was severely brain injured in a car accident in 2009.

Celia Kitzinger said: "At the moment it is legal to allow people to die by withdrawing artificial nutrition and hydration, but that can mean watching a long, slow death which many relatives just cannot bear the thought of.

"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? There must be a more merciful way of allowing people to die. It's a message about being merciful and reducing suffering.

"We suggest that the lived reality of the families facing these decisions should be taken into account and that other ways of bringing about the death of severely brain damaged patients should be given full ethical consideration."

The study found that, although two thirds of 51 individuals questioned believed their relative would rather be dead than stay alive in a long-term vegetative or minimally conscious state, far fewer were willing to consider an application for withdrawal of artificial nutrition and hydration to allow death.

Celia and Jenny Kitzinger say the views of relatives should be given ethical consideration in legal and medical debates on .

Jenny Kitzinger explained: "The withdrawal of artificial nutrition and hydration is currently the only legally available and certain exit route for such severely brain injured patients. But failing to provide food or water to a loved one, even because of the conviction that they would prefer to be allowed to die, is a highly emotive issue with deep cultural resonance. Many of the people we interviewed were concerned that, even with a confirmed diagnosis, their relatives would experience pain and suffering if nutrition and hydration were withdrawn or that it would be distressing for other family members to watch.

"There was a widespread perception that lethal injections would be more humane, compassionate and dignified than what they worried was 'death from neglect' as a result of treatment withdrawal."

One interviewee told the researchers: "I would view a lethal injection as a kinder decision, because if you stop feeding them, they are going to die. If you've made that decision, you might as well do it as humanely as you possibly can. To starve somebody to death seems a particularly cruel thing to do."

Some interviewees told the researchers they fought for medical interventions in the early stages of the injury or trauma in the hope their relative might recover. Some now regretted this believing the patient had suffered a fate worse than death. Many said that, rather than actively seek withdrawal of artificial nutrition and hydration, they were waiting for a natural death with some working with doctors on agreements not to resuscitate patients if they suffered a cardiac arrest or not to treat life-threatening infections with antibiotics.

One interviewee said: "I don't feel it's my place to go to a court and say 'I want his nutrition withdrawn'. I don't think I could do that. But I don't think it's right or fair to actively take steps to prolong this life. I suppose I'm waiting for [him] to die naturally'."

Explore further: Making medical decisions

Related Stories

Making medical decisions

December 13, 2013
"You're asking me to make these decisions. How do I make these decisions? I'm fighting for my little girl's life […] We shouldn't have been asked for a decision. […] it was almost as if the responsibility was being passed ...

English court in landmark right-to-die ruling

September 28, 2011
An English judge ruled on Wednesday that a brain-damaged, minimally conscious woman should not be allowed to die, in a landmark case about the right to life-supporting treatment.

Family decides when to cut off life support: Canada court (Update)

October 18, 2013
Family, not doctors, should decide when to cut off life support, the Supreme Court of Canada ruled Friday in the case of a severely-brain damaged man.

Do patients in a vegetative state recognize loved ones?

December 16, 2013
Patients in a vegetative state are awake, breathe on their own, and seem to go in and out of sleep. But they do not respond to what is happening around them and exhibit no signs of conscious awareness. With communication ...

A combined method for detecting consciousness

January 9, 2012
The combination of transcranial magnetic stimulation and electroencephalography constitutes a new method allowing the traces of conscious activity to be revealed in brain injured patients.

New test may help distinguish between vegetative and minimally conscious state

May 13, 2011
(PhysOrg.com) -- In a new study published in Science, researchers from the University of Liege in Belgium, led by Dr. Melanie Boly, share the discovery of a new test that could aid physicians in differentiating between vegetative ...

Recommended for you

Drug therapy from lethal bacteria could reduce kidney transplant rejection

August 3, 2017
An experimental treatment derived from a potentially deadly microorganism may provide lifesaving help for kidney transplant patients, according to an international study led by investigators at Cedars-Sinai.

Exploring the potential of human echolocation

June 25, 2017
People who are visually impaired will often use a cane to feel out their surroundings. With training and practice, people can learn to use the pitch, loudness and timbre of echoes from the cane or other sounds to navigate ...

Team eradicates hepatitis C in 10 patients following lifesaving transplants from infected donors

April 30, 2017
Ten patients at Penn Medicine have been cured of the Hepatitis C virus (HCV) following lifesaving kidney transplants from deceased donors who were infected with the disease. The findings point to new strategies for increasing ...

'bench to bedside to bench': Scientists call for closer basic-clinical collaborations

March 24, 2017
In the era of genome sequencing, it's time to update the old "bench-to-bedside" shorthand for how basic research discoveries inform clinical practice, researchers from The Jackson Laboratory (JAX), National Human Genome Research ...

The ethics of tracking athletes' biometric data

January 18, 2017
(Medical Xpress)—Whether it is a FitBit or a heart rate monitor, biometric technologies have become household devices. Professional sports leagues use some of the most technologically advanced biodata tracking systems to ...

Financial ties between researchers and drug industry linked to positive trial results

January 18, 2017
Financial ties between researchers and companies that make the drugs they are studying are independently associated with positive trial results, suggesting bias in the evidence base, concludes a study published by The BMJ ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.