A right to die

In my last post I said that after we arrived in Cuba, my mum told me my aunt had passed away.  Whilst a surprise that it happened just then, it wasn't  entirely unexpected that she might die before my return, as she had made it very clear that she wanted her life to end.

I realise that this may seem an odd thing to write about in a travel blog, and it may not be easy to read, but I am writing it because I believe the issue of a person having the right to choose to die is important. It certainly was to my aunt, both on a personal level and in principle, and she was keen to bring the issue to people's attention.

My aunt had a disease called Distonia and as a result became a wheelchair user at the age of twelve, also developing increasing disabilities in the use of her arms and with her speech.  For many years she lived with her parents and was cared for by them; later she moved into a Leonard Cheshire residential home.  This was good, as she was able to take advantage of the activities that the home offered, and so she improved her quality of life somewhat.

As well as participating in arts and crafts, computer studies and therapies in the home, she was able to go on trips to theatres and sporting events, and to take holidays.  She became involved in improvement activities for people with disabilities, representing her peers at national meetings and writing to MPs and the media on issues such as the mobility allowance that she relied upon to enable her to make trips out of the home.  She took the opportunities to live and enjoy her life despite her disabilities.

However those disabilities were gradually making her life more and more difficult particularly as her speech made it harder for her to communicate with people in the way that she would have liked, making her feel isolated and, at times, lonely.  She knew it would only worsen, and a few years ago she made it clear to us that she did not want to go on living.

She started to look into the right to die.  With the help of a solicitor, she drew up documents saying that she did not want to be resuscitated or fed intraveneously, but rather she wished to be allowed to die. Of course that would only work if a life threatening situation arose.

Not wishing to just wait for that, she thought about taking her own life.  She had discussed it with my mum, and we were all very clear that this was not just a bad phase but what she truly wanted.  So we agreed to support her right to decide.

Someone else may have just been able to take their life.  But it was not that simple for my aunt.  She lacked the physical capability that is required for many forms of suicide, and the opportunity for most others.  She could perhaps have driven her wheelchair in front of a train, but understandably that kind of approach that could be dangerous and distressing to others is not one that she would have wanted to use.

And it is not a task that someone else can help you with.  Suicide itself is not illegal in the UK, but assisting someone else still is.  Whilst the Director of Public Prosecutions has given some helpful indications that they will not automatically prosecute someone who they are satisfied was genuinely acting in line with the wishes of the person, at present it would still be an illegal act.  So it would very likely cause significant difficulties even if, in the end, no formal prosecution happened.

So my aunt looked into the Dignitas Clinic in Switzerland where, in well defined circumstances, it is legal for a trained nurse to assist you.  It is costly, and my aunt had limited funds, so family would probably have had to help her financially, as well as in getting to the clinic for both the initial consultation and then the act itself.  It is unclear whether even just that help would still have been illegal.

There also was a risk that they may not accept her.  The problem is that the method of suicide is poison, which you have to take by yourself.  My aunt drinks through a straw and had difficulty swallowing quickly, so may have been unable to drink it herself, or worse, may have only managed to drink some, and do herself terrible internal damage but yet not die.

So if she decided to go ahead, this would be a difficult and anxiety ridden route for her to take, but she was actively considering it.

Then three days before we set off for Cuba, I went with my mum to visit my aunt at the residential care home where she lives.  When we arrived, we found that the home had called the GP out to see her, because they were concerned about her.

Without going into a lot of unnecessary detail, it was clear that she was not well, and the GP took it upon themself to call a non-emergency ambulance and have her taken to hospital.  Even though it is especially hard for my aunt to speak when she is ill, while we waited for the transport to arrive, she made it absolutely clear to us that she did not want to be treated if, without treatment, she could die.

When the ambulance came, they told us that even with the documents that she had, they were not permitted to withhold lifesaving treatment should the need arise, and that once at the hospital, a specific form was required, which could be signed only after she had been seen by two doctors.  And the form is only valid for three weeks.  We were astounded firstly that no one had told my aunt this previously, and that secondly the paperwork would have to be renewed so regularly to be valid.

Thankfully we made it to the hospital and got the proper paperwork done, but my mum and I repeatedly had to reiterate to the staff that my aunt was refusing to be treated until we knew whether what she had was life threatening.  

On a couple of occasions it had certainly looked like she was terminally ill, but she rallied.  By the early hours, they had decided that what she had was not life threatening, so we explained this to my aunt.  She was disappointed, but agreed to have the treatment.  We had been assured though that if at any point it became clear that her situation was potentially fatal, treatment could be stopped.

When I left for Cuba, as far as we knew she was not going to die, and in fact they were thinking of releasing her the next day.

Instead, she took a turn for the worse and stronger treatments were required to save her.  At which point my mum had to get into an almighty battle with the doctor to prevent him from treating my aunt against her will.  Despite the paperwork and despite my aunt's wishes, because she could be easily treated, and it was too difficult for my aunt to communicate clearly to him at that time, he was determined that he must save her.

My mum on the other hand, was equally determined that, despite how hard she found it personally, she would ensure that my aunt's wishes were adhered to, and she fought them all the way.  They referred it higher, and eventually decided to respect what my aunt wanted.  They made her comfortable but gave her no treatment, and in due course, she passed away.

So my aunt did get what she wanted, and whilst we are sad that she is no longer with us, we are glad that she did.  It is just a shame that it has to be so hard for someone with full mental competence to be able to do so.

Of course this issue is a complex one, and there will always be dangers that any system could be abused.  I am in no way advocating a system that allows someone to be coerced into ending their own life; it should only be on the clear and tested wishes of the individual.  And it should not be a replacement for good palliative care, just an alternative for those who wish it.  Because for some people, the quality of their life is more important than the quantity, and they are the only people who can judge whether or not they are content with the quality.

It seems wrong to me that we are prepared to let an animal be put to sleep in order to avoid it suffering, but we are reluctant to give people the ability to make that decision for themselves and help them to find a simple, peaceful and dignified way to achieve it.  Had there been a legal process in place in the UK, my aunt could have chosen her time to go, having said her goodbyes to people, and my mum would not have had the horrible situation of having to demand that her sister be allowed to die, when really all she wanted to do was to be able to support and comfort her in her last hours.