What do Tony Nicklinson, Richard Marsh and Dawn Faizey Webster have in common?
All three were diagnosed with Locked-In Syndrome after suffering a stroke.
A person diagnosed with classic Locked-In Syndrome (LIS) is conscious, aware and has all cognitive abilities, but no motor function. It’s often regarded as the disability that offers the lowest quality of life since the only movement the person is able to make is with the eyes. This syndrome is one of the so-called “hard cases” used by some to argue that assisted suicide should be legal.
Tony Nicklinson was a vocal advocate for assisted suicide. He was diagnosed with Locked-In Syndrome in 2005 and described his life as “dull, miserable, demeaning, undignified and intolerable”. He argued in court that a doctor should be allowed to help him kill himself, since he was physically unable to do so. After learning that his request was rejected, he refused food and treatment for pneumonia and died six days later.
The Telegraph reported the story of Richard Marsh, who recalls hearing his wife and the doctor discussing switching off his life support while he was locked in. He describes setting little goals for himself to increase his movements. Five years later he claims to be “95% back to normal”. He says, “I’ve always appreciated life” and “I feel I’ve gained a lot from the experience.”
Dawn Faizey Webster has had Locked-In Syndrome for 11 years. At some point even her eye muscles were paralysed. She recently completed her autobiography and a degree in Ancient History and has now set her sights on a Master’s degree in History of Art.
In an article by the Daily Mirror Dawn says, “No matter what obstacles were in my way, I was determined to reach my goal.
“When I first had my stroke, I realised I would not be able to do anything physical. I then decided to use the thing that had not been affected – my brain. I felt I needed to prove to myself and to others that I was still me, Dawn.”
Her mother says, “She has her bad days, as anyone in her condition would, but she is determined to keep going.”
The lives of Tony Nicklinson, Richard Marsh and Dawn Faizey Webster show that Locked-In Syndrome is not unbearable by definition. Richard and Dawn both embraced life and the abilities they still had. Both of them had a generally positive attitude to their circumstances. They set goals and were determined to achieve them. Their stories show that physical suffering and limitations do not determine a person’s quality of life, happiness, or sense of dignity. Whether life feels bearable or unbearable is determined by the person’s attitude, resilience and flexibility – by a person’s mental and emotional coping skills.
Tony, Richard and Dawn suffered the same physical disability, but only Tony wanted assisted suicide. Research by The French Association for Locked-In Syndrome confirms that only a small minority of Locked-In patients want to die and that for most this desire is transient. 53% of respondents have envisaged euthanasia at some point, but only 7% of patients desired euthanasia at the time of the study. 68% of the total sample never had suicidal thoughts. 72% of the sample described “good subjective well-being”. The longer people had Locked-In Syndrome, the more likely they were to report happiness, which suggests that they adapted to life with this condition.
I found it particularly interesting that, according to the researchers, “irreversibility cannot be ascertained until, after the acute setting and rehabilitation, their subjective well being has reached steady state, which may take as long a year” (page 3). This statement seems to suggest that people’s general attitude to life and emotional health not only affect their happiness but also whether their Locked-In condition is reversible or not. It also implies that at least a year would be necessary to ascertain whether a locked-in person’s desire for assisted suicide or euthanasia is indeed persistent.
Some patients suffering from a terminal or chronic condition want to die. Others don’t. Some people are physically healthy, but still have an intense desire to die. The desire to die is therefore metaphysical – independent of one’s physical condition.
People with terminal or chronic illness should not receive special treatment in the assisted suicide debate. If they are allowed legal assisted suicide and others who want to die are not, the law would be discriminatory and unfair. Assisted suicide should be legal for everyone who wants to die, or for no-one.
The fundamental question in this debate is, “Should anyone who wants to die receive help to kill themselves?”
If the answer is ‘yes’, we should not only legalise assisted suicide on demand, but also make suicide prevention and the treatment of suicidal depression illegal. If people have the “right to control their death”, surely suicide intervention infringes on this “right”.
I argue that the answer is “no”.
The desire to die is often transient, as the above-cited French study shows. The desire to die could be part of the process of coming to terms with grief and loss. Life can feel unbearable when we are faced with a situation we have no experience with or feel we can’t cope with – when we feel our existing resources are inadequate. Increased resources and support can help us to regain hope and confidence. Life can feel bearable and enjoyable, irrespective of the physical condition we find ourselves in.
People who want to die should not be helped to kill themselves, but helped to find hope. Assisted suicide should remain illegal for everyone.