Caring, but at what price?

I have just been reading a book review in the New York Times today http://www.nytimes.com/2013/09/08/books/review/knocking-on-heavens-door-by-katy-butler.html?pagewanted=1&_r=0 and it has brought back memories of my childhood, which was spent in the shadow of a father dying of emphysema, angina and progressive blindness from glaucoma.

The book is inspired by the plight of the author's parents after her father suffered a stroke.  “Only later would I understand the rush,” Butler writes. “The hospital was losing money on him with every passing day. Out of $20,228 in services performed and billed, Medicare would reimburse Middlesex Memorial only $6,559, a lump sum based on the severity of my father’s stroke diagnosis.”  The problem of reimbursement for services rendered is not part of the British experience because we have the National Health Service, though the question of the cost of keeping a patient alive would certainly be a part of the equation here, but it is the consequences of the treatment which concerns me.

My mother spelt on a mattress on the sitting room floor after it was deemed that my brother and I should have separate rooms when we got to a certain age.  One of the things my brother and I had to do before going to bed was to bring her mattress into the sitting room.  It was the only way that she could get much sleep, and even that would depend on how well my father was during the night.

Father died just over two weeks after my 18th birthday, it was almost as though he had been waiting for me to be an 'adult' before he went.  He cast a mighty shadow over my life and his illnesses hastened the end of my mother's life.  She was 22 years younger than my father, but died 11 years after him at the age of 68.  When you compare this with her siblings; a sister who is still going strong at 89, one brother who died aged 90 and the other aged 97 it puts a spotlight on her death at over twenty years younger than them at the time of death.

When my father did die it was strange because for the first time that I could remember we didn't have to go out and get, or do, whatever we needed and rush home because father might be ill and was in need of constant attendance.  The idea of being able to browse in shops, stop for a chat, just do things without making arrangements was quite foreign to our whole way of thinking.  The needs of my father over rode the needs of anyone else in the family and the strain of trying not to upset him and bring on an angina attack was not an easy thing with someone on steroids in the 60's and 70's.  It is 35 years since he died and there wasn't even the possibility of having a mobile phone to remain in contact when we were out of the house.

The strain of being a carer for someone is not to be underestimated by anyone if the one they are caring for has a long term chronic illness.  We are not talking about months of caring, but years of caring.  My mother also ran the house, looked after a large garden which my father insisted should have big vegetable beds, partly because his family were Market Gardeners, and partly because they had lived through WW2 with food shortages, and that was just what people did then.  A garden was not an outside room, it was a factory for food.  All this with no help, but a lot of criticism, from my father, and in hind sight I would have to say with little help from my brother and I.  To us severe and chronic illness was just a normal part of life.  I have no memories of 'playing' with my father, but I remember the challenge every Spring to see if he could make it to the bench by the allotments in the village.

What would medical science have done to him today?  Would they have fitted a pace maker and resuscitated him repeatedly?  As it was he was able to go in his own time, and when his formidable determination had finally run its course.  When I was 12 doctors had given up on him and left him to die only to find he was still alive the next day.  This came in between my have an appendectomy and a few weeks later some large kidney stones removed.  My mother took up smoking again during this period - surprise, surprise.

So should the ability of medical science to keep someone alive over ride the natural process of dying?  It is a difficult balance to achieve; a moral and ethical minefield that exorcises the medical and legal professions as well as the religious sensibilities of many.  My father often said that they would not keep a dog alive in the condition he was in, but his own will to live was also strong as he often showed.  Ultimately I think the decision has to be made for and in the best interests of the family.  It is all very well doing 'miracles' of keeping people alive, but those who do the miracles don't have to live with the long term consequences.  We all have to be allowed to go in our own time.  It is scary, and something I have been forced to think of since my diagnosis of incurable Metastatic Breast Cancer.  I don't want to be a burden on anyone and have them put their own life on hold for me.  I want to be allowed to go when my time is right.  That doesn't mean that I won't fight for life for myself or others, but we have to be realistic to realise that we don't have the right to overstep the boundary of death and pull people back to a life they would not want for themselves, and if the carers could say so probably also a life that they don't want.  It has nothing to do with how much you love or care for someone, or whether you can give that love and caring, it is because in the end nature has the greatest power over all living things and we should respect that.

Listening

I am in Gloucester at the moment to attend the 286th Three Choirs Festival in the cathedral, and other venues in the city.  I came three years ago when it was last in Gloucester and it is something that has stayed with me; the sound of instruments and voices reverberating in the cathedral which is one of my favourite places.  I attended Evensong yesterday which was broadcast live on Radio 3 (so some of you may be able to get it on the BBC iPlayer if you are interested), but as always what really came to my mind was the sound, the use of the acoustic and the fact that this space has been used for worship for at least 900 years.  It is also the way that hearing something 'live' really makes you listen to what you are hearing, as well as finding new things that you hadn't noticed before.  When sound is around you, you have to follow it and locate it.  On the radio/CD player/MP3 it is just there in your ear and the fact that you don't have to locate it in the same way means that you don't listen to it with the same sort of concentration.

I was reading a blog earlier this morning which is also about listening http://kdhhealthcomm.wordpress.com/2013/07/31/reach-for-your-best/.  How many of us feel that doctors just don't listen?  That they have made a diagnosis almost before you have walked in the room and said a word?  How many of us actually think they are even listening to what we have to say? 

The medical profession doesn't feel the need to listen to the patient because they have all the answers already, and they have a medical degree ... true, but you don't happen to inhabit my body, have my symptoms or know how I am feeling.  If various doctors had listened to me, looked at their own test results and ignored the statistics which said I was too young to have breast cancer I may not now have Stage IV, Metastatic Breast Cancer.  Of course I understand that I may still have had a progression to Stage IV, but when health car professionals are constantly going on about early detection saving lives ... I find it a bit hard to take.  After all they didn't listen to me.

At the moment the NHS has a campaign about lung cancer.  If you have had a cough for more than three weeks go and see your doctor and get it checked out.  Chances are it is not lung cancer, but if it is then getting it early makes it more treatable.  Wonderful.  But I have a friend who has had a cough for 18 months, has mentioned it to her doctor and nothing has been done.  Well, or course, she doesn't smoke so maybe that is what rules out the possibility of lung cancer because statistics say ...

I am not a statistic on a piece of paper, I am a statistic that is moving and breathing and you need to listen to me to locate my problem.  I am not the skeleton hanging in the medical school classroom, and I am not a list of symptoms given in a certain order of 'importance' as dictated by statistics.

I am fully aware that my cancer is incurable.  I am fully aware that there may be nothing you can do about some symptoms.  I just want to feel that you have listened to me, acted on what I have said, and then told me the truth of the situation.  If there is nothing you can do, then so be it, but my experience with the medical profession has left me feeling that they will only do something when it is too late because you don't present with the top 3 symptoms as statistically you are supposed to.  So do me a favour doc and just listen.

Human genes can not be patented

The United States Supreme Court has ruled that companies can not patent human genes and stop others researching specific genes or developing tests. 

http://bcaction.org/2013/06/13/victory-supreme-court-outlaws-human-gene-patents/

Why on earth was the patenting of human genes permitted?  How could one company be allowed to 'own' a human gene and dictate what tests and research could be done with that gene.  Whether or not you agree with Angelina Jolie's decision to have a double mastectomy because she is a carrier of one of the BCRA genes, the announcement came at a critical time to bring the cost of BCRA testing to the forefront of the press.  I don't know if this was intentional, but I think it must have made millions aware of this situation.  I don't deny any company the right to make a decent profit but some have taken this to obscene lengths.  In the case of the Banks they have had their snouts in the trough so long they don't seem to have any concept of what are fair profits and ethical practices.

Do some companies even comprehend that there are profits to be made, and extortionate profits to be made?  Value for money seems to be a concept that is foreign to them because they only value that they can see is profit for themselves and not value for the customer.

Health is a fundamental human right.  It is one that can not be guaranteed, and it is not one that can be possible for all people, but just think where medicine would be now if previous generations of  researchers and companies had taken a similar path to so many today.  Sadly many of the biggest advances in treatments come as a result of war, as with plastic surgery in WW2 with improvements in the treatment of those badly burned, especially in the RAF.  They came to realise that those who healed better were those who had been shot down over the sea, and that sea water had something to do with this healing process.  What would the tucked and tightened of today do if those who had discovered this had patented it? 

But not all of those who take out a patent do it to extract every last penny from their products.  In an interview I saw on the internet there was one lady (can't find it now) who had a royalty cheque of about $2.70 the previous year for the genes she had patented, and such people only have to do this so they can be protected them for others to research for better treatments. 

http://news.nationalgeographic.com/news/2013/06/130614-supreme-court-gene-patent-ruling-human-genome-science/