"I was extremely engaged withe the issues raised by Mr Morris's case, having watched as a powerless bystander as a friend in a similar situation was transferred to a care home. I was impressed by the outcome in his case, and wished much that similar attention to his social context and the possible conflict between his wishes and those of his relatives had marked the outcome for my friend.
"One point that was touched on in the program, but not given nearly enough prominence, even by your extremely sensible panel, is the contextual nature of capacity and confusion. I was utterly unsurprised that Mr Morris improved in his home context, while his initial hostility and unwillingness to engage with care was also very understandable. Older people with some dementia obviously derive huge advantage from a familiar context, and the same person placed for acute reasons in a hospital ward can seem completely out of any rational contact with their surroundings. BUT if you engage them with a discussion of their friends at church, their late husband's job, what happened to them forty years ago, they can seem quite in control. AND this is PRECISELY what the care team who have never met them before CANNOT DO because they can't supply the right links to get the memories working - names, little details and so on.
"My friend lived for a couple of years in the care home, but never understood where she was and could not be convinced that she wasn't still living at home. I could not be sorry that death removed her from it, but still weep for what she lost at the point when she entered it."
William
"Last night’s programme was interesting because, maybe unwittingly, it revealed just how difficult it is to separate, but also acknowledge, the rights and responsibilities of both patient and families and carers. Indeed, I felt that the contributors shied away from exploring properly the possible conflict there could be between patient and family. We got to a position of the zero sum game – a benefit for A will inevitably mean a loss for B – if one was to take an ethical position. What I’d have liked more of is how to move from this theoretical, de jure, position of pure ethics, to a de facto one of 'how do we make this work for all parties involved?'
"I should state here that I have an interest in this area as my father was diagnosed with vascular dementia 18 or so months ago and is now in a care home. But while he was in hospital I, along with the relevant authorities, had to decide what was best for my father. The position I was faced with was a mentally confused and physically weak man who to all intents and purposes needed attentive and continuing care. One of the most robust discussions I had during this period was with the case officer from my father’s local authority who was arguing that, despite all the evidence to the contrary, my dad should be sent back home and would receive social service support, two hours a day, morning and evening. I felt this to be unacceptable – both to him and, selfishly, to me.
"I was, therefore, slightly concerned by one of the panellists who blithely stated that ethical decisions can have victims – but this is something we just have to accept. I disagree with that view for two reasons: one, had my father been sent home as a consequence of a purely ethical analysis I – we (the authorities) – would have been failing in the duty of care that my father deserved. Second, I would have been put in the invidious position of having to make up any shortfall in the proposed care package - a prospect that worried me deeply. Put simply, neither my father’s or my best interests would have been served.
"There is considerable confusion in this area – where does the expression, and thus recognition of free will, begin and end, and at what point do third parties have to make decisions on behalf of an individual? This lack of clarity came through last night – while the daughter of the patient was applying to the Office of the Public Guardian for control over his affairs, the patient was still signing forms agreeing to this, that and the other. If it was deemed that receivership was necessary for the patient then surely he shouldn’t still have been signing contracts with third parties.
"As I say this is a complicated area and one which I feel is still evolving legally and ethically."
Jonathan
"I hope the BBC will be sending a copy of the programme out to all the NHS Discharge Teams as I have yet to meet one who has got anyone who even understands their responsibilities under MCA let alone deals with risk issues with families and organises care packages.Usually it is just dumped with Social Care who get told they are blocking a bed."
Spratty
"I wonder how many hard working full time sandwich generation mothers listened to this and disagreed with your team. Never been offered any type of support to assist my relationship with my father who has demanded I look after him psychologically for the last 30 years whenever he had a mental health crisis. Now in his mid eighties I have abandoned him in the hope the NHS and Social Work will actually give him some care. I cannot cope anymore and suspect the daughter in this scenario may also have felt like this. Of course maybe I am the one with the problem in which case keeping away from him may be for his benefit.
Not all families are happy families where reciprocal care has been given and the periods of crisis support are years rather than decades.
"I found your professionals rather patronising. To me the man cannot look after himself and needs to be treated like a child both for his own sake and for his family. Home care support in this area means if your lucky 1 hour a day - what about the other 23hrs."
Anon
"As a medical social worker in a large busy hospital, I was interested to listen to the programme. I was somewhat concerned that 'Social Services' were included as a fairly irrelevant part of the process of planning Mr Morris's discharge - my own experience is very different, as I consider my role is very much a part of the whole assessment process, to support patients and carers. Indeed, a somewhat rose coloured view of the process was painted - in reality, my colleagues and I find on a daily basis that we are battling with health colleagues to ensure that a full need and risk assessment is carried out for patients before discharge. We often find that medical staff try to dictate what the outcomes should be, especially for older people, and the emphasis is completely on fast discharges and avoiding bed blocking, with no risk taking. Medical staff are often not particularly concerned about capacity issues - only last week a nurse told me it was ridiculous, when I pointed out that it was not for her or me to make a decision about a patient's future, but for the patient themselves. I don't want to be completely critical of medical staff and imply that social workers are completely ethical - we're not. We also have to work within constraints of time and very, very limited resources.
"In my opinion, today's NHS and Social services seems to have little time for ethics."
Liz
"Three points:-
"1. The critical event which enabled Mr Morris to be cared for in his own home was the application by his family to the Court of Protection. More needed to be explained about how that was achieved.
"2. Throughout our lives we have to learn to modify our demands to take account of the legitimate needs of others. The impression given by the programme was that during old age that no longer applies - that however excessive an old man's demands on his family were, he had the right to make them.
"3.What would the outcome for Mr Morris have been if his family had not been granted the power to take over his financial affairs? Such demands as he was making could have been made by someone not suffering from confusion or 'lack of capacity' in the legal sense. "
Wendy
"What made my blood boil about your patronising comments about the old chap was this: (a) he may well have decided that he knew what he wanted - to die in his own home and (b) that his daughter ought to start pulling her weight in the family after all these years. The last thing he needed was 'care teams' and 'cognitive development' assessments. Don't you people realise that your 'ethical' approach often misses the whole point?"
W
"2 years ago I found myself in a similar situation. I live 140 miles away from my father who was having episodal falls / collapses at home. He was suffering from incontinence but otherwise apparently fit, but leaving food uneaten and rotting in the fridge. Every 2-3 months he would fall at home and be incapable of looking after himself. I would come dashing down, contact social services etc for assessments regarding future home care and all would be undone when he stated he could manage at home as his sister up the road could look after him. His sister was 4 years older than him with her own problems and would then berate me with leaving her with the responsibility of picking up the pieces with my father. As far as the NHS was concerned, they would only hear what they wanted to hear - viz my father said he would be cared for rather than the practicalities of that care provision. My father was no lightweight and I could not lift him or move him to a commode unaided, even if I was with him to nurse. At no point would anyone tell me what was actually wrong with my father so I could plan how to look after him, always on the grounds of 'patient confidentiality'. His final stay in hospital was marred by 'Patient Line' which meant that as he refused to subscribe I could not speak directly to him. Doctors would not speak to me on the telephone and were not available at the weekend when I visited. No one was available to clarify the point when another fall admission became a terminal illness. I feel badly let down by the system that did not involve me on a level playing field in my father's care, and am left with a feeling of guilt that I was not there when my father needed me because I was not informed of what was going on. The NHS only heard what they wanted to hear to discharge a patient and I was well out of the loop. tonight's program with it's talk of 'patient's capabilities to make decisions' regarding care brought it all back to me with a vengeance. All the carers were looking at the old man but not at his family and the need to keep them fully informed about his condition. 2 years on I am still trying to get over the grief and frustration of trying to care for my father 140 miles away and hold down a job without being told what was wrong with my father despite asking."
Rachel
"It was obviously in the patient's best interest to be placed in a 'dementia' nursing home, why didn`t the ethics committee use common sense and discreetly transfer him to one? As regards ethics - why wasn`t that equally applied to the devoted daughter, it was certainly unethical even to think of asking her to cut herself off from her father by withdrawing her help. It is morally wrong for the informal carer not to be accorded the same rights as the cared-for."
Caroline (70+ carer)
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