Protecting patient interests

This week there has been a lot of focus on a person’s right to live or right to die. This week the case of Tony Nicklinson and Martin went to the High Court; the two men both have locked-in syndrome and had sort permission for people to help them to end their own lives. You can read the judgement here and there have been lots of thoughtful newspaper and blog coverage of the decision. In a nutshell the Court considered that they could not make a judgement because the implications went beyond these cases and would require a change in the law about assisted dying that needs to happen through parliament. As I followed the coverage of the case this week I couldn’t help but think about the personal implications, what would I want to happen in such a situation (answer – I don’t really know), how would I feel if it was my Dad/partner/brother with locked-in syndrome.

In my Dad’s case he was an incredibly fit and healthy man before he got cancer. He was a postman and walked between 10-15 miles for work, six days a week, for over thirty years. He spent his spare time walking on Dartmoor or supporting Army Cadets. The only time you’d find him sat still was occasionally of an evening, watching a film or re-runs of Dad’s Army on TV. One of my big fears, I think shared by himself and other family members, is that he would have a long and lingering decline. The reality of course is that he has lived for almost five year with cancer and has fought it ever since diagnosis. The thing about fighting is that it comes and goes, there are fits and starts, while Dad has certainly declined and has nothing like the fitness or stamina he once did, he has still been able to actively engage in things. There have only been a handful of occasions where Dad has been passive in his illness, I can probably count them on one hand. Those times, for me, are the scariest. They are the times when it’s like Dad isn’t there, the fight is seeping from his eyes, he is extraordinarily tired and not sure he can fight much longer. There have been about three of those occasions in the last two months, which in itself isn’t surprising as we know he is living on borrowed time now. That said, so far, he has usually been admitted into hospital at that point and given blood transfusions and other treatment, and stabilised and has managed to leave in a few days.

One consolation of Dad having a terminal diagnosis is that it gives you time to think and to some extent, to plan. Dad has a TEP (a Treatment Escalation Plan), this form contains a treatment protocol that was written by the medics treating Dad with my parents, following Dad’s decision to sign a DNR last year. That decision was not taken lightly. It involved conversations between my parents and their GP and various other people involved in Dad’s treatment. The form lays things out in black and white, I can’t remember exactly what it says (although I have a photo on my phone somewhere so I always have it with me) but the wording is something along the lines of Dad’s condition being so severe/advanced/terminal that further life sustaining treatment would be futile. It’s the word futile that sticks in my mind. It is a simple fact that were Dad to haemorrhage or have a cardiac arrest there is no benefit to him in being kept alive. I’ve discussed this before and the challenges of living with that reality here.

The last time Dad was admitted to hospital (about two weeks ago) I was sat with him in A&E as he was being assessed, clutching his TEP form. He said to the nurse asking him questions that he had a DNR and a form, I was quite impressed he said it so matter of factly. For a man who has been emotional about everything of late, who’d cried at people winning olympic medals, at failing to win, at preparing for them, to be able to keep it together when sharing that information is testament to two things in my mind – his strength, and his certainty about his wishes. The nurse asked if they had a copy of that on their notes, I shared the TEP with her so she could take another copy and said that it should be on Dad’s records (last time I looked at his file when we were in it was indeed stapled to the inside front cover of his folder). What she said next surprised me.

She said that if anything happened before Dad was seen by a doctor (there was a lonnng wait, it was a busy night) she couldn’t adhere to that. As a nurse she would have to treat Dad because their doctors hadn’t signed it off. Dad and I both queried this and she said she’d double check with her boss. Dad then piped up with ‘Don’t worry, my daughter knows what I want, she wouldn’t let you’, at this point she said to me ‘of course you know what your Dad wants, and you have the form, so you’d just have to stop us’. When she went off to take a copy of the form Dad asked if I was ok with that, luckily neither of us actually thought it would come to that, but I looked him in the eye and promised him that I’d stop them, even if it required me to physically intervene.

Later on the nurse came back and said not to worry, they had the copy already and it was all sorted. She’d also written on the board 222. The hospital crash team are contacted by dialling 222 and she didn’t wan’t to write DNR on the board, or No to 222 so she’d written it and crossed it out. She explained that it wasn’t nice to see it on the board and she didn’t want to upset anyone. This in itself was fascinating to me. This nurse was brilliant, she was caring, she was banterful, she put Dad at ease….but she was also obviously not that comfortable or sure about protocol or acceptability of withdrawing treatment. It’s no surprise given how little we as a society discuss these things. From my perspective that nurse was trying to balance Dad’s wishes with those of her own and her concerns for other patients.

There in lies the rub. None of us live in isolation. It isn’t straight forward when you consider an individual’s situation because we are all members of society, a patient in a hospital is a piece of a much bigger jigsaw. Whatever judgement or decision is made around the treatment for Tony Nicklinson or Martin, or my Dad on this microlevel, does have an implication for other patients, for the staff and for family members.

This morning I read another article in The Observer that talked about a man, L, left in a vegetative state following a heart attack. The Trust treating him, Pennine Acute Hospitals NHS Trust, consider that it is not in his best interests for them to intervene and offer ventilation/resuscitation if his conditions worsens or if he suffers a life-threatening event. His family are not in agreement. They think it should be for them to decide on his care and they believe it is too early (five weeks since his heart attack) to give up hope of his condition improving. The Court of Protection in London will be asked to make a judgement on this tomorrow.

I feel for L’s family I really do. I also feel for the people treating him. It is an almost impossibly difficult situation. Five weeks is not long to come to terms with the loss of the person who was once in your life, it is sometimes hard to accept the magnitude of the situation and it is hard to accept that there is nothing people can do – as a society we are lead to believe that medical science can cure most things these days. It is a devastating realisation when you come face to face with a situation for which there is no cure. It takes time to accept that reality and I’m sure for some that is never reconciled.

I think we’re really lucky that my Dad has chosen his treatment wishes himself.  I feel grateful that we’ve had a chance to discuss them with him. I actually feel more empowered having been put in a situation where he has given me carte blanche permission to advocate for them, by force if required. I hope it never comes to that. Ultimately these situations don’t tend to be black and white, you can be sat clutching the form of wishes and yet still need to intervene, you can also be sat feeling like you need to advocate for what your loved one would have wanted – in the face of a hopeless reality and a bunch of medically qualified personnel telling you something else – and have no power to do so.

Life and death decisions are complicated and none of us are immune. My advice would be to discuss with your loved ones and next of kin what you’d want to happen in a similar situation. I’m not sure what legal weight a Living Will or an Advanced Directive or a TEP actually holds, but I know it is much easier to confidently advocate for a loved one if you have discussed a situation and know what they would have wanted.

3 thoughts on “Protecting patient interests

  1. Like others I find this a difficult issue. I have a sense of knowing what I want for myself, but I also find I am reflecting on my experience with both my parents.

    It is almost 30 years since my mother’s death. I still have a sense of anger when I think about it – she should not have died at the time she did! About four years early she had been diagnosed with non-hodgkins lymphoma and had undergone several courses of chemotherapy and a few weeks earlier her tests had shown she was free of cancer. She was admitted to the same hospital where she had received her chemotherapy for a routine operation – I no longer recall what. I discussed with my father whether to visit that weekend and followed his advice to wait for the following weekend when Mum would enjoy the visit more. That visit never happened – in the early hours of Monday morning, my mother had a heart attack and did not recover. There was something so wrong about her recovery and then being snatched away.

    My father, then in his mid-70s, continued to live alone and was actively involved in his local community. He made a number of visits to Germany to visit me and my son and also travelled around the UK visiting other family members. In his late 80s, he began to have a number of transient ischemic attacks (TIAs), something that came as a surprise to us as he had regularly had blood and other tests following the death of his younger brother from a series of strokes. As my father’s health deteriorated, he had a number of hospital admissions and was resuscitated on more than one occasion. He went to live with my brother, a doctor holding a senior hospital position. One weekend, I was visiting, when Dad was admitted to hospital on the Sunday morning. I realised Dad probably did not have long to live and asked my brother what the situation was regarding NDR. My brother was adamant their was no discussion to have, my father would be resuscitated no matter what. The last time I saw my father, it was obvious his mind was still fully functioning, but he had lost his power of speech and his manual dexterity and was totally dependant on his carers. When we looked at each other, I saw desperation in his eyes, a look I could only interpret as longing for this all to end.

    I am now in my early 60s. As a Christian, I am taught that God determines when we die and that it is not for man to interfere. Medical friends tell me of the quality of palliative care and how much better end of life care is than it once was. Yet I know that I do not want to be physically dependant on others and I also am convinced that there is nothing to be feared in death – it is an inevitable part of life. Although I am prepared to receive treatment for acute illnesses, I have decided I do not want treatment for any chronic condition and I do not want to be subject to medical and nursing staff prolonging my life should there be a situation where resuscitation is an option – to my mind, that is them playing God. What I would like is a certainty that my wishes would be complied with by my nearest and dearest, as and when the situation requires them to act.

  2. Thanks for this and thanks for sharing your own experiences. I struggle with these issues and think about them a lot. My own experiences as far as my father was concerned have shaped my attitudes in a lot of ways. He was very much in favour of assisted suicide and said he would not want to be treated were he in that state but towards the end of his life, he was very frightened of dying and he changed his mind as he clung on to life with a vigour that he had previously denied having.
    It made me realise that it is easier to plan ahead than to know how anyone else might feel in that situation and I don’t think I could even say now what I would want if I were in another particular situation. I do think that it’s an issue that also has to be decided on a case by case matter and do worry about how guilt, mental wellness and particularly depression may feed into capacity to make decisions to die but that’s not to say we should deny those with disabilities the rights that we each can take regarding killing ourselves.

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