During the last quarter of her life, my Mum was often ill. Her breathing problems became so bad, there would be crisis after crisis, occasions where she was not expected to survive. After recovering from these, she would usually say the same things, and have an identical conversation with me. She lamented the fact that voluntary euthanasia was illegal in the UK. She could see a future where she would not want to go on, but be unable to end her life with dignity, at a time of her own choosing. A vocal supporter of the ‘right to die’ campaign, she would always tell me that she did not want to, in her words, ‘end up as a cabbage’. There were numerous times, when she would ask me to reassure her that I would advise any medical authorities that she was not to be resuscitated, and that her life was not to be maintained artificially. I made this promise to her frequently, and it seemed to calm her fears.
In recent years, there were news reports of clinics in Switzerland, where terminally ill patients could pay to be assisted with suicide. These places were technically legal there, but anyone assisting someone to travel to them for the purpose of voluntary euthanasia, was possibly committing a crime in the UK. There were other high profile cases, where sufferers of incurable diseases, condemned to a life of little or no communication, and requiring round-the-clock care, took their case for the right to die to courts in this country, and in Europe. They all failed in their cases, and some were assisted to die later, by loved ones, who were charged with criminal offences here. My Mum would look at these reports, and comment how disgusted she was that these people were not allowed to die in the way that they wished. She would compare this situation to that of pet care. Animals are not allowed to suffer, and when they have terrible injuries, or incurable diseases, vets always suggest putting them to sleep. ‘So why not the same for humans?’, she would ask.
When she was struck down by the disabling strokes, shortly before her death, she was soon transferred from the Casualty Department, to the Intensive Care Unit. She was put on life support, and was deemed to be unable to breathe without assistance, and despite obvious agitation, and full mobility of arms and legs, we were also told that she would never recover the power of speech or reason, or be able to walk, or to ever look after herself again. I had a quiet chat with the Consultant Physician there, and told him of my Mum’s wishes. He advised me that they would wait for 24 hours, and then make a decision. He implied that her brain had been irrevocably damaged by a series of small strokes, followed by a large bleed into her brain, and that he did not expect her to live past that weekend. He assured me that they would do their best to make her comfortable, and free from pain.
The next day, with her condition unchanged, he sought my permission to take her off life support. Continuing with her wishes, I readily agreed, and expected that she would die soon after. Despite the upset of all this, I was content that she would suffer no more, and that I had complied with all her wishes, as well as my previous promises. The breathing tube was removed, along with the gastric feed, and intravenous drip. I prepared myself, along with my wife and some of my family, to be at her deathbed.
But she didn’t die. She started to breathe on her own, and continued to shout, and act in a very agitated way, often clawing and scratching at herself. She uttered occasional sentences that were comprehensible, and I began to feel that she might make a recovery, however minimal. They even transferred her, from Intensive Care, to a general ward. She did not regain consciousness in the accepted sense, but she continued to breathe on her own, and to exhibit full movement of both arms and legs. When we went the next day, she was moved into a side ward, as the noise from around the other beds seemed to be disturbing her. The new doctor told me that she was ‘still dying’, and that there was absolutely no chance of recovery. She added that all care had been withdrawn, and that it was ‘only a matter of time’ before she died. The nurses (who I can only praise) carried on washing her, changing her bedclothes and nightwear, and moistening her lips, with a small sponge on a stick. We were allowed unlimited visiting, unrestricted by time of day.
The next day, her condition was little changed. The urinary catheter had been joined by a large tube inserted into her rectum, and the contents of both tubes were draining into bags attached to the bed. There was not a great deal in either container, as it was now almost five days since she had eaten, or had anything to drink. Despite sleeping much of the time, she still became agitated, clawing at the tubes, which bothered her immensely. The membranes in her body were now dry from dehydration, and I can only imagine the discomfort of tubes inserted into those delicate areas, which were now chafing painfully. Her skin was also discoloured and dry from lack of nutrition and fluids, and her long term eczema problem was flaring up out of control. She scratched constantly, breaking the skin, and causing blood to run freely down her arms and legs. I had been in the Ambulance Service for much of my life, and seen many terrible things. But this was my mother, and it was too much to bear, to see her this way.
I telephoned the hospital, and asked for a meeting with her doctors the next day, when I was to be joined by my cousin. To be fair, they took me very seriously, and turned out in force. Three senior doctors, from various specialities, together with the doctor directly responsible for her care, all met us at the bedside. They listened to my heartfelt concerns. I had expected my Mum to die, and she hadn’t. I was told she might only live for a day, and this was six days later. I asked them to replace the drip, to rehydrate her, and to resume the feeding, via the naso-gastric tube. If she was not going to die, then I could not stand to see her enduring such suffering.
They looked concerned, and appeared to be very sympathetic, but their answer was a resounding ‘no’. I had agreed to removal of life support, and that meant that it could not be reinstated afterwards, no matter how long it took for her to die. By doing this, I had also handed over responsibility to them, and the decision making process was no longer something I could be involved with. They informed me that they would continue in this fashion, for however long it took, for her to die of starvation, and dehydration. These conditions would eventually cause her organs to fail, and she would die as a result of this. Yet her death certificate would read that she had been killed by a major stroke. In the meantime, they would try their best to keep her comfortable, and to keep her suffering at a minimum. They would not remove the tubes from her vagina and anus, as it made life easier for the carers, even though nothing was coming down them any longer. They cooed soothingly, and smiled in a caring way as they departed, leaving Mum in something resembling a scene from a horror film, and me racked with guilt, that I had decided to keep my old promises.
It took six more days for her to die. Six days, and six nights, of scratching, clawing, jerking, and rolling around in that bed. For many hours we all sat by that bedside, eyes filled with despair and regret, until I was unable to look anymore. I longed for her death; for her, and for us, to end all our sufferings. It seemed after all that Mum did have a right to die. But it was only when the doctors decreed it, and it was to be at their discretion, not hers.
I later realised that euthanasia does exist here. It is called by another name; The Liverpool Care Pathway. It must be the most tragic misnomer in history, as it involves little care, and the only pathway is that of suffering.