Saturday, September 15, 2012

Following on on my controversial blathering

It's always interesting throwing around a hot potato. The euthanasia debate, if it can be called such since there seems to be a desire to try and push it back into the cupboard, is such. Once again I will state I support the right for safe legal euthanasia, it's not for me but I believe it should be an option for those requiring it. I do wonder about the funding though - seems getting Pharmac to pay out for any drugs is quite a challenge.

If we were to legalise euthanasia what exactly are we legalising? Usually the debate raises its head when some one "self euthanises". (Euthanasia is medically agreed to be the termination of life by a doctor at the request of a patient). From looking at countries where euthanasia is legalised it seems to me that often this is not the act that has been legalised. Would legalising it actually mean family members and friends would no longer be at risk of being charged with assisted suicide?

It seems to me it's a bit like the whole civil union thing. We'll give you something like what you've asked for but not the actual thing.

In the Netherlands they have a Termination of life on request and Assisted Suicide Act. It states the criteria that must be met and requires a second doctor (see, it is medically driven) to agree. Even when all requirements are met the doctors can still be the subject of investigation.

Under current Dutch law, euthanasia by doctors is only legal in cases of "hopeless and unbearable" suffering. In practice this means that it is limited to those suffering from serious medical conditions and in considerable pain. Helping somebody to commit suicide without meeting the qualifications of the current Dutch euthanasia law is illegal.

Switzerland is a slightly different story. In Switzerland, assisted suicide falls under Article 115 of the Swiss penal code. As such it is ‘a crime if and only if the motive is selfish’. What is important in Switzerland is motive, not intent. All assisted suicides in Switzerland are video-taped. Once a death is reported to the police, the police, an officer from the coroner's department and a doctor all attend the death. At this time family and friends are interviewed. If a selfish motive cannot be established, there is no crime. I'm not sure how that would work with regard to wills in favour of family members (as most are) or insurance payouts to cover the cost of burial etc - death by suicide is currently excluded on many if not all insurance policies

So are what would the New Zealand law look like if it eventuates? I'd be guessing pretty much in line with the Netherlands rather than Switzerland. In my opinion the Dutch system is less stressful for family because they are absolved of any involvement but I really don't know.

Who knows what will happen. we've moved from civil union to looking at legislating equal rights to marriage for single sex couples so maybe we'll see it as a more expedient decision to make the big step and follow Switzerland. I'm sure sensible advocates will certainly be reading any proposals very carefully to look for any tricky phrases which are subjective rather than objective.

I don't think all of the people are going to end up happy all of the time and if it eventuates it may be a smaller proportion than desired of some of the people who will be happy. Clear as mud?

Now I'll stop chasing controversy and go back to sunshine and lollipops.

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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.

Friday, September 7, 2012

Wobbly hedgehog syndrome

I just found out that domesticated hedgehogs are prone to a disease similar to MS. Now I'm just going to tell people I have wobbly hedgehog syndrome.

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Tuesday, September 4, 2012

When big man speaks others listen.

To date I've had 3 referrals to Gastro. One from a service coordinator, one from an allied health professional and one from a neurologist. Two either didn't get done or were ignored and one was auctioned. Can you guess which one! I've noticed this is also the case with my occupational health referral. What does it say about our health system where referrals can be ignored?

Any way I've received a letter from Gastro saying we've received a referral and we'll see you sometime in the next 6 months, don't hold your breath, if we decide it's important we might see you sooner rather than later but don't ask when. Any problems see your GP. Surely if your GP could deal with the problem you wouldn't need them. Coincidentally the occupational therapy referral receipt received two weeks ago said much the same and so we wait.

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The Days of our lives

As sand through the hour glass so are the days of our lives.

Today was follow up X-ray day for my hip so that meant a drive to South Auckland where my excellent surgeon (one hopes) operates out of. The parking is excellent and the staff are all very nice. Good the films on CD so not such if I can do a comparison. Now I just need to cross everything that he agrees to proceed.

The bane of my life at the moment is the dysphagia. Everything takes a stop-off at the top of my oesophagus - it's the Dhubai of my body. I end up feeling like I have constant carotid pressure on my throat. It usually takes at least 3 hours for something a small as a tablespoon of rice to continue it's journey. When cup-a-soup sticks you know things are awry. Luckily coffee always works so I can always become a caffiened up anorexic. This really is taking stomach stapling to the extreme.

Got lots of social things coming up and it's hard making the call. It all depends on whether I've had my bionic surgery by then. A lady in the park was very impressed with the quality of her replacements and that was 15 years ago so I'm really expecting to be Jamie Summers. The not driving for 6 weeks may be a problem. I certainly won't be strolling up the driveway. Maybe I need to get a cart built and Millie can tow me up.

Haven't had any communication yet from Gastro. I hope it's not another case of lost or not done referrals. Not that I'm really dying to have a tube shoved down my throat to see what's happening. Though I do prefer that tithe other end of the GI tract.

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