Friday, September 14, 2012

Different strokes for different folks

Today's New Zealand Herald's front page article (here) was about the discharge without conviction of the husband of a woman who 'euthanised' herself. I certainly agree that he should in no way be held responsible for her decision.

Euthanasia is defined as " the act of killing someone painlessly, esp to relieve suffering from an incurable illness" (Collins English Dictionary). Multiple Sclerosis is " a chronic progressive disease of the central nervous system characterized by loss of some of the myelin sheath surrounding certain nerve fibres and resulting in speech and visual disorders, tremor, muscular incoordination, partial paralysis, etc." (Collins English Dictionary). It is currently incurable but as such not terminal - tricky.

Rosie has PPMS - the mean type. People with PPMS do often progress quite rapidly to the point where they require mobility aids, often electric wheelchairs or mobility scooters. They may develop all the symptoms of MS. As people will tell you it's not MS that can kill you it's the consequences of the symptoms that can. PPMS does not appear to be slowed by the use of interferons so most treatments are around helping people with PPMS cope with the disease. It is progressive and seems to be a fairly linear degeneration according to the neurologist I saw last month.

I read through the news report and felt there must be more as Rosie's biggest complaint was she was having to drink her yogurt because her tremor made it difficult to get her spoon to her mouth. There was a link to the court document and I hoped that it would provide more information. At this point I was of the opinion that we would certainly be better to have legalised voluntary euthanasia under medical supervision.  Thus families would not be subjected to charges of assisted suicide or, at the very least, be able to be with their loved one as they died rather than having to find their body. This would also prevent the granny-cides, which people are often certain will happen.

The other point for legalising euthanasia is that it could be carried out when the person requesting it had reached their limits rather than requiring them to do it while they still can. Interestingly, at this point in writing my blog I had a tremor which made this entry disappear and created 3 drafts - this one and 2 blank ones!

At the time of her death Rosie's symptoms included "tremors that made it increasingly difficult to feed herself, difficulty walking, incontinence, and pain." She was "in pain, and losing the ability to walk and take care of herself. She hated the indignity of her condition and made the decision to end her life." Her decision was made sometime in 2010 and carried it out just after Christmas 2011. This is the only information provided on Rosie's symptoms so they may have been significantly worse or she may have had more debilitating ones as well.

This makes me think about the people I know with PPMS who self catheterise, use wheelchairs and scooters and have carers. These same people also go to music festivals, concerts and overseas holidays alone. It shows that different people can cope with different things. Certainly refutes the saying we're only given what we can bear.

I have noted that many people who commit suicide say they are doing so because they are a burden. I don't know how having an important person missing from your life and having to explain the loss can be any less of a burden  than caring for someone you love. Again my opinion.

So how has reading this article affected me? Firstly, I had to explain to my son why someone with MS would do this. Then I looked at my current situation. I am unable to eat currently so I've looked at the alternatives. I know that if it doesn't improve there are feeding systems that can bypass the whole problem area. At present I would rather have a PEG than leave my family grieving. That is my opinion. I struggle to walk and constantly push myself (thank you marathon training) and use a crutch and occasionally a wheelchair but I would rather be in a wheelchair than leave my family. I am taking so many tablets I rattle but I hope that they will help me feel at least a little better. I have speech difficulties that mean I struggle to converse sometimes. My memory is shit and this makes writing difficult. It does mean I regularly get to enjoy movies I've already seen and books I've already read with new eyes. I can't see clearly out of my right eye but my left works. I have no feeling in my feet but that has it's advantages.  The biggie for me is I can not work in the job I love because the governing body deems me not worthy of being a midwife as I can't function in all areas. The euthanasia I'm considering in that case is not my own. But I personally cannot see a point at which I'd say pull the plug.

So I support legislation making the decisions some people may wish to make legal but I am not interested in taking up the offer and I would sincerely hope no one suggests it to me. I would hope it would only be legal at a point where quality of life is intolerable rather than inconvenient. And I would hope that the month around Christmas would be a no euthanasia zone because that is supposed to be a time of joy and togetherness and not to be spoilt by intentional death as opposed to accidental but that's just my opinion.


Neale Jackson said...

Nic,wonderfully written as always,but I thought your perspective fell short of claiming human rights. We all have basic rights, and these are limited only they obstruct someone else. I have the right to try and feed my family, and even if they are starving that doesn't justify theft from your veggie garden. If they die of starvation outside your front gate, you aren't to blame for withholding food. {trivial example that might exist in some African situations}. I need explanation as to me how my rights to die are a greater infringement to your rights than mine, and if I stand at your gate and ask for help but you ignore me in my dying days does it matter if my request is for food or for poison? This Christmas day we celebrate 1 year since the wonderful life of my father ended, choosing not to do any of the life prolonging medical treatments that would surely have seen him die at a more convenient time of year. Bollocks to convenient timing.

Nic Miller-Clendon said...

I think you may not have got my intent. My intent was that while I might not choose euthanasia I support anyone else's right. It was headed different strokes for different folks.