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Assisted Dying

Who Makes the Final Decision?

Peter Owen Publishers

A DEATH AT DIGNITAS

John Close: 'More like a thing than a human being'

My brother John Close's penultimate conscious act was to push down on the plunger of a feeding syringe that delivered, straight to his stomach, the overdose of barbiturates that would end his life. He carried out that act with such determination there was no room for doubt: by that stage of his motor neurone disease John had only a few weeks of life left, but he wanted to die more than he wanted to live.

His last act was typical John. He smiled a warm, loving and heartfelt 'Thank you and goodbye' to the four people who were with him: me, his younger sister, our older sister Margaret, my partner Michael and John's loyal friend Peggy. We were lucky to be with John because knowing how he died has brought us comfort ever since, but he achieved the peaceful and dignified death he sought, at 4.30 in the afternoon of Monday 26 May 2003 only because he had help from Dignitas. That meant that we were forced to travel over five hundred miles from Milton Keynes to Zurich. Tragically, John could have lived a few weeks longer if he had been able to ask his GP for help to die in England. Dying at home would have relieved him of the need to be physically able to make that final journey. He could have tolerated allowing his body to deteriorate a little further before choosing to die.

John was nine when I was born, and a monochrome photo taken when I was tiny shows him cradling his baby sister with a tender smile on his face. My parents appointed him to be one of my godparents, and I believe he carried the weight of that responsibility all his life – albeit in a secular capacity. We were very close, and, in a reversal of the usual state of affairs, John often turned to me for advice which I seldom felt qualified to give. His diagnosis with motor neurone disease (MND) did not change our relationship. In many ways it just brought us closer. Almost two years after being given the devastating news that he was dying, and before he had taken any steps towards contacting Dignitas, he asked me, via the personal organizer with which he communicated, what I thought about having help from the organization to end his life. I said that it was his life and that I would help him do whatever he wanted with it. His reply was typical of his sense of humour: he typed, 'But not tonight. I want to watch Lord of the Rings.'

I was ridiculously proud of my big brother, who was handsome with dark curly hair and slightly olive skin. I was thrilled to follow him to a grammar school where his name was remembered with affection and a degree of awe. Among other things John taught me to ride a bike and to play the guitar, and he cheerfully taught me the lyrics and chord sequences of songs I liked. He even explained what a honky-tonk woman was and why it was not an ideal song for a teenage girl to perform in public.

Our mother was eighty-six when John found out about Dignitas. She was frail and living in a residential home, so there was no question of her travelling with us to Zurich. His decision to seek an assisted death broke her heart, not just because he was the apple of her eye. A more important consideration was that John's decision to end his life meant that he would not be allowed into heaven. She was certain she was going there, and the thought of being deprived of her son's company in the afterlife was acutely painful. She continued to feel this way even after I reminded her that John was dying and that he was suffering intolerably in the process. I saw her almost immediately after I returned to England, when he had been dead for three days, and she asked whether he had turned to Christ as he died. She was disappointed when I told her that, apart from the four of us who supported him as he died, his comfort had come in the form of the nurse from whose hand he accepted the medication to end his life.

John was divorced at the time of his death, and the heartbreaking end of that marriage, like the end of other relationships before and after it, had inspired him to write some beautiful songs. Song-writing was what defined him for many people, although he had many different jobs, mostly in information technology after Michael and I introduced him to computers in the 1980s. From the late 1960s playing the guitar and, later, fiddle and keyboards and composing songs was what he really loved – and lived – to do. He was a self-taught musician who carried on learning his craft until he stopped writing music. That day occurred only a couple of months before he died, by which time playing a keyboard had become too difficult. Even then he spent all his time listening to music.

By the time he died John had been out of bed for almost twelve hours, and I don't think he had slept very much in the previous thirty-six hours. I got very little sleep after Michael and I said goodnight to him around midnight on Sunday 25 May 2003. Our readiness for sleep was not helped by John's suggestion that the three of us should watch the funniest bits from his favourite film, Monty Python's Life of Brian, one last time.

In the final week of John's life Michael and I looked after him because his social-care arrangements had descended into chaos. The three of us found that the enforced closeness made it a difficult time, but Michael and I also found it a privilege that John trusted us to look after him when he was so vulnerable. Like me, Michael derives comfort from knowing how John died: we both feared that he would die alone in his bed while asleep. This is a very common death for MND patients; it occurs because the diaphragm is weak and breathing is difficult, especially when lying down. My fear was not that John would die without waking: if he had been unaware what was happening to him death would have been peaceful. My worry was that he might have woken, alone and afraid, as he struggled for breath as his life ended.

The three of us watching a funny film the night before John died had not been part of the plan. During the week leading up to his last weekend John had decided that Sunday would be a quiet day with no visitors and that he would have an early night so he could be up with the lark on Monday. But things seldom work out as planned, and, although there were no visitors, Sunday had been a busy day.

Saturday had been even busier because John invited his friends to join him at his wake. Michael, who shared his sense of humour, knew that John would love the idea of attending his own wake and suggested it shortly after John got his date for Dignitas. John was initially concerned that the emotional lability which was part of his disease might lead to him crying and that his tears might be misinterpreted by guests who did not understand his illness.

Emotional lability had led John's GP to prescribe tranquillizers before his diagnosis. John had found himself crying in meetings at work, and he was diagnosed with stress. In fact, inappropriate emotional displays are a common symptom of MND. The sufferer may experience involuntary episodes of crying or laughing. John retained an appropriate ability to laugh right up to the day he died, but he would cry inappropriately frequently and freely.

John's informal wake was held at the pub nearest to his home in Middleton, Milton Keynes. He chose it because we could easily push him there in his wheelchair. Despite the poor acoustics of the outdoor setting next to Willen Lake we were privileged to hear many fine singers perform excellent versions of beautiful songs in his honour. We returned to the flat at around six o'clock and spent the evening at home.

On the last Sunday we made a final trip to the huge Tesco store a mile or so away. The shop's café, with its level entry and wheelchair-friendly seating, was one of its redeeming features. It was the nearest supermarket we could reach on foot. John could not get in or out of a car, and we could push him there in his wheelchair. While Peggy, Michael and I watched, John pretended to be Eric Morecambe and played the fool with some sunglasses he and Peggy had found at Willen Lake a few days earlier. Peggy, who met John when he started playing gigs in a Milton Keynes wine bar with her ex-husband in 1975, tells me she still wears those sunglasses.

After the three of us had a drink and a snack John indicated that we would take a different route home. He had lived in Milton Keynes for almost thirty years, so we had no worries about letting him navigate. As we followed his route, which was beautiful and tranquil, it started to rain. Undeterred, we wrapped John in a selection of carrier bags and recycling sacks to stop him getting too wet and cold. It was only when we were close to home that John complained of his legs feeling cold. The swift application of some Deep Heat medication to his limbs soon remedied this, and we carried on.

Later that afternoon Michael and I had something to eat, and we gave John some water. He did not want to eat – by that stage 'eating' meant that someone would give him several large syringes full of a liquid diet called Ensure through a feeding tube.

That had been John's main food source since the previous autumn. He had the operation to insert a percutaneous endoscopic gastroscopy, or PEG, in August 2002 while he was living in a nursing home. When he returned to his room after the operation he was greeted by two jolly nurses telling him that they would fix up the drip and he would remain connected to it for several hours. John was horrified by the prospect and threatened to rip out the PEG.

I had seldom seen him so angry since his diagnosis with MND eighteen months earlier, but his impatience was understandable. His enjoyment of life was already limited by the disease, and he wanted the feeding process to be over as quickly as if he was eating with a knife and fork. He clearly had not been told everything he needed to know about the PEG, and he hated the idea of being restricted in this way. The staff could see that he was furious, so they left Michael and me to calm him down and prevent him damaging his stomach by interfering with the site of his recent surgery. John had always enjoyed eating. The thought of never eating normally again was profoundly depressing. Link that to the prospect of being connected for several hours to a pump delivering gloop instead of real food and one could understand why he was so agitated.

After we had been on our own for a while and he had calmed down another nurse entered. He told us about the 'bolus' feeding method which uses a huge syringe without a needle. It was so simple I could have cried with relief. All John had to do was to empty a sachet of Ensure into a jug, put the syringe in the gloop and pull up the plunger. After connecting the syringe to the end of the PEG tube he undid the clip on the tube and squirted the mixture into his stomach. A few syringefuls sufficed. The process took minutes rather than hours, and John liked the bolus method much better than the drip.

At the time he had his PEG surgery he was still eating normally, although he took great care to avoid hard or flaky food as this made him choke. Because he always tried to anticipate the progress of the disease he was prepared for the fact that sooner or later he would have to stop eating ordinary food. He was well informed about the illness and appeared able to predict what was coming next. He was always ready for the next loss, the next development in the progression of his illness.

John's speech was one of the first symptoms that led to his diagnosis. He joked that he could no longer say 'rhinoceros', so he – and we – introduced the animal into as many conversations as possible to make us all laugh. He tried using a Lightwriter but found it slower than using an organizer or his computer: he was very tech-savvy and decided that the Lightwriter technology was designed for people who were not! He had a limp when he was diagnosed, and, within a year, it had progressed to his being unable to walk. Within eighteen months he could not support his already considerably reduced weight on his legs, so standing to transfer between his wheelchair and shower chair or from a wheelchair to his bed became impossible. John's occupational therapist provided a smooth wooden transfer board that solved the problem, as it enabled him to slide sideways. Eventually he was given a hoist, because he could no longer bear his weight during those transfers.

Once he had been hoisted into bed we would arrange his body so that he was comfortable. This was always the same position to start with, lying on his side with a pillow between his now bony knees. During the night, by making a superhuman effort, he could roll on to his back, but then he was stuck like a beetle and sometimes needed help during the night to get comfortable once more. He had a urine bottle by the bed so that he could relieve himself without disturbing his carer, but after being hoisted out of bed the following morning he would require assistance to get on to the shower chair or to use the lavatory.

MND is a horrible illness. David Niven, who died of the condition in 1983, said, 'Whatever you do, don't get this bloody awful disease.' It could almost be described as a family of illnesses, as it takes a different course in every individual who is diagnosed with it. Some people with MND can speak and swallow until the day they die. The first symptoms can be very varied and may include rapidly progressive weakness, muscle atrophy and fasciculations (twitches under the skin), muscle spasticity, difficulty speaking (dysarthria), difficulty swallowing (dysphagia) and difficulty breathing (dyspnea). The progression of the disease cannot be confidently predicted, and the prognosis John was given was six months to five years. To start with he lived as if he had been given six months, doing everything he considered to be important straight away. These tasks included organizing the recordings he had made of his own songs as well as their lyrics. While he was in hospital and that life-changing diagnosis wasn't even a shadow on the horizon he wrote some beautiful love songs. By the time he had the PEG inserted he had been living with a diagnosis of MND for a year and a half and had already had several simple pleasures taken away from him, including making himself understood verbally, singing, playing the guitar, walking and eating pretty much anything he fancied.

The last time John ate chips was in a Woolworths cafeteria. This was during a dreadful period from April to October 2002 after he was evicted from the room he had been living in very happily in Stony Stratford. He was offered a room in a nursing home which he accepted because it was intended as a short-term refuge while work on his newly built disabled person's flat in Milton Keynes was completed. On being made homeless he had been told that the flat would be ready in about two weeks, but every time we asked when it would be available we were told that it would be another two weeks. If we had known how long it would take to complete the work we would have made our home as John-friendly as possible and moved him in with us. But at least the nursing home was close to his friends and allowed them to visit him easily, whereas taking John from Milton Keynes to our home in south Buckinghamshire would have removed that possibility.

Every Saturday Michael and I would take him away from the ceaseless roar of televisions in the rooms of comatose patients and the constant clamour of bells ringing to summon carers who were rushed off their feet. On the day John last ate chips we had driven him from the nursing home to our house when he decided that he wanted to visit High Wycombe. Because we arrived there at lunchtime we ate at Woolworths, not for its fine dining but because there was step-free access – via a lift – to the first-floor café and a reasonable amount of room at the tables. I will never forget the look of panic on John's face as he started to choke on a chip. By then the three of us had experienced a similar situation many times, and we knew what to do. Michael and I swung into action: I administered back slaps while Michael handed John some serviettes to hold in front of his mouth. Diners around us looked horrified as John coughed and spluttered ineffectually for a couple of minutes before the problem was resolved.

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Excerpted from Assisted Dying by Lesley Close, Jo Cartwright. Copyright © 2014 Lesley Close. Excerpted by permission of Peter Owen Publishers.
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