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You have probably heard of 'Living wills' and you have probably discounted them - I certainly had, until my mother died last year, if you have time please then read this review. You just might have a very different view by the time you get to the end.
My mother was diagnosed with renal illness about five years ago - she had undergone tests as she wasn't feeling well but was surprised to discover that her kidneys weren't functioning well. However she already had osteoporosis, both her hips were impacted and she suffered frequent TIAs (mini strokes) so she had been on a wide range of medication for some years.
The doctors told her there was little they could do for her kidneys other than monitor them and as the years progressed the only real treatment she was ever offered was iron transfusions about a year before she died. She knew she was too old for a kidney transplant and they told her she couldn't have dialysis as she was already over 80. She therefore knew, and we knew, that before too long she was going to die.
However my mother was a very spirited old lady and she soldiered on as best as she could. She lived in sheltered accommodation and my sister was living within about a mile of her. I live about 250 miles away so didn't visit too often but we spoke daily on the telephone. She had regular bouts of severe pain from the osteoporosis which she bore stoically although they were very debilitating. I fought a bitter battle on her behalf to get the local authority to fit her a proper bath in her bungalow so that she could at least relax in the warmth of a hot bath to ease the pain a little. She did very well considering all her ailments but towards the end of August 2005 she knew she was deteriorating significantly.
I went up to visit her and effectively we said our goodbyes - now that may seem weird to some readers I know, but Mum and I were close despite the distance and we understood one another very well. We had a sixth sense between us and although she seemed very bright in herself she knew she hadn't very long to go. We had never discussed the question of her resuscitation though, as that was just too difficult a subject, although we had discussed it often in the context of friends and in the context of my father who had died about nine years previously so we knew her views.
In late September when talking to her one evening she explained that she was in terrible pain and couldn't get any relief. She had called the doctor out and he had told her that there wasn't anything he could really offer her over and above the tablets she was already taking. As Mum wasn't one to complain I was concerned. I was even more worried when she conceded that she might need to go into somewhere like the hospice 'for a day or two to get the pain under control' - this was very out of character so I told her I would see what I could do.
The following morning I rang the local hospice who first told
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Mum with me and my sister when we were children
me that as Mum didn't have cancer they couldn't help. I persisted and they put me through to the Macmillan nurse who said she couldn't help without a referral from the community nurse. I rang the community nurses and they said they needed a referral from her GP however when I pressed them they agreed to speak to the GP practice and to visit Mum as soon as they could. True to their word they visited and one of the nurses rang me back later that day. She said she was very concerned when she got to Mum's bungalow, she had found her on the floor in front of the gas fire trying to get some pain relief from the heat of the fire. She had spoken to the Macmillan nurses who had promised to visit Mum the following day to see what help they could offer.I rang Mum with the news and she was very relieved. She felt at last that someone was going to go and help her, my sister arranged to spend the day with her to meet the nurses adn discuss the options. No one visited. Mum was devastated. I rang them the following day and was told they couldn't help as she wasn't one of their patients. I was very angry - whilst I can understand they may have rules I felt (and still do) that to say they were going and then not turn up without a word was very cruel indeed. They had built up an expectation and then dashed it without a word of explanation displaying a total lack of empathy for Mum's situation.
I rang her GP and insisted on speaking to the doctor. He promised to visit her later during the day and to ring me back when he had been. He did and he said she had a chest infection so he had given her something for that but there was nothing he could offer her for pain relief however he would speak to the senior partner about her case and ring me back. When he hadn't rung me by 4.45pm I rang again. It was a Friday and I wasn't going to let her go the whole weekend again with no pain relief. In short he said there was nothing he could do - I protested that I did not want her to spend her final days in agony and he replied that he didn't think we were "at that stage yet".
I spoke to Mum on the Friday evening and she was clearly quite poorly, she said she had a terrible cold and didn't want me to visit for fear she would pass it on to me. She was obviously very chesty and my sister agreed to spend the night with her. On the Saturday morning she was no better and she had deteriorated markedly so I suggested to my sister that she got someone out to look at her. Where Mum lived the out of hours is dealt with by NHS Direct and previous experience has led us to believe all that gets you is a long wait for anyone to ring you back. By this time Mum was becoming delerious so my sister pulled the alarm cord and requested them to call for an ambulance.
The emergency ambulance team took Mum on blue lights to the hospital where she was admitted into the casualty department amid talk of septic shock. She was clearly very poorly indeed and my sister was called in to see the doctor who asked her to consider what her wishes would be in respect of resuscitation. My sister and I spoke about this and we were both agreed that Mum would not want agressive intervention. She already knew that she hadn't got long and she hated hospitals so with great sadness my sister told the doctors this. Mum was transferred on to a ward and made comfortable and my sister sat with her late into the night. I made arrangements to travel North early the following morning.
I had a restless night and with some trepidation I rang the hospital before I left. I spoke to the doctor on the ward who told me that she was comfortable and that although they hadn't managed to put in a central line overnight as she was so weak they had finally managed to get one in just before I rang. I was somewhat surprised but nevertheless I set off for the five hour journey uncertain what I would find when I got there.
I arrived to find Mum connected up to a wide range of equipment monitoring all her vital signs. They said she was 'comfortable' but she was anything but. They said she was delerious as she kept talking about a party but we explained that there was an event scheduled for the sheltered scheme that day so she certainly wasn't delerious! She knew me and was able to speak a little, I asked her if she was in any pain and she said she was and it was awful, just dreadful and she couldn't stand it. The nurse said she wasn't in any pain at all and was just delerious.
I asked to speak to the doctor and sat down with my sister to talk to him about what was going on. He seemed pleased that they had managed to get the central line in and begin treatment and said they were hoping to be able to restore the chemical balance in her blood. I asked if he had looked at her medical records as she was being treated for renal failure in the same hospital. He said they hadn't got access to them as it was the weekend and that he only had our word for it that she had renal failure. I explained to him that she had been in the most terrible pain the previous week and he said quite often GPs didn't get things right and it was left to hospitals to deal with it when the old folk got brought in!
I explained that much as we loved Mum dearly we really didn't want her to be out through all of this unless she could actually be helped in some way and that we certainly didn't want to prolong her agony unnecessarily. He asked if she had made an advance directive or Living Will - we said she hadn't and he explained that without anything in writing they would continue to treat her as they were doing until they could see her notes on Monday.
I can't really go into much more detail about the rest of the day as it is too distressing. Suffice it to say that although the nurses were very caring and kind Mum was continuously given treatment in an effort to 'restore the chemical balance of her blood'. I am certain many of the nurses understood what we were saying but their hands were tied because the doctors were adamant they were going to continue treatment regardless of our views.
On the Monday morning the consultant visited and took the view that the efforts were all in vain in view of Mum's kidney problems. He wanted to stop treatment and let her pass away peacefully but he needed our consent to do so. It struck me as bizarre beyond belief - they had been adamant that she had to be treated all day Sunday against our wishes but on Monday they wanted us to consent to them stopping treatment. Having 'balanced her blood' on Sunday it then took two long days for Mum's failing kidneys to finally fail followeing which all the other organs failed. Two agonising days for us as a family watching two days of suffering which she need never have endured.
As I drove home on the long journey back to Suffolk I could not put out of my mind the view that my mother had been little more than a training exercise for the young doctors on the ward on Sunday. An opportunity to test out their training in blood chemistry in an effort that was neither kind to their patient nor likely to produce a positive result. I was angry then and I am still angry today as I write it. What I wanted most for my Mum was to get some pain relief for her in her last week and I failed in that. Having failed to get the pain relief I would at least have liked her last hours to be peaceful and pain free. The last thing I wanted for her was to be hooked up to all the drips and catheters being treated for no useful reason whilst her system was shutting down.
The sad thing is it need not have happened. If she had written her thoughts down and entrusted them to us we could have handed it over and the doctors would have taken heed of it. I therefore suggest to all of you that you think carefully about making an advance directive or living will and making sure that those you love and trust have a copy of it as well as registering it with your GP. It is my earnest hope that having read this someone, somewhere will manage to avoid going through the same experience with their nearest and dearest by writing down their view in advance.
As a footnote it is said that September is known as the 'killing month' in hospitals. It is the time of year when young doctors first come on to the wards and the previous year's intake move up a rung. At weekends it is highly likely these young doctors will be in charge of care on the wards and may lack the maturity and confidence to make these brave decisions . Personally I find it hard to believe that patient's medical records are not accessible at weekends to enable the doctors to have all the facts at their fingeritps and I do believe that needs to be addressed as a matter of urgency.
I dedicate this review to my wonderful mother who sadly passed away on 27th September 2005
What an informative review, it's just a shame that you've had to endure such sadness to write it. Erica x
paisleyman 01.03.2007 00:15
What a very moving piece. What you must have gone through, I have been thinking along these lines of ones last days for some time. I will certainly make sure my wishes are known. Certainly an exceptional work
eyebright1234 22.12.2006 00:32
Thankyou for that laramax.How very sad .
I will remember that advice .
Hubby's Dad died last Jan and was in a similar position refusing to be treated. Its so awful to be unable to help. XX