Treating Patients with Dementia

James Beattie, Cardiologist at the Heart of England NHS Foundation Trust in Birmingham, with a longstanding interest in end of life care 

 

Liz Sampson, Old Age Psychiatrist and a Clinical Researcher at University College London looking at end of life care in people with dementia

 

Penney Lewis, Co-Director of the Centre of Medical Law and Ethics at Kings College London, who has a particular interest in Advanced Decisions

 

 

 

 

 

I just by chance heard tonight's programme about decisions to be made with someone with advanced dementia. What an excellent programme! 

 

I so felt for the daughter and what she went through. What a difficult time she had. The story was almost identical to my own and my parents last 10 years of their life and all the time all those questions are floating around your head about what is the right thing to do. Sadly there will be thousands of families going through the same dilemmas. No-one seems to want to discuss or try to talk about these issues although I know things are much better now with initiatives such as Dying Matters etc. The experience I had was that the care home staff were amazing. After a few bad experiences in hospital for mum we gave instruction for her not to be admitted again but preferred care home staff to take care of her.

 

Sadly we lost both mum and dad this year at the ages of 79 and 78 but will be forever grateful for the love, dignity and respect that was shown to her for the 4.5 years she was in the care home.

 

Thank you for broadcasting such a relevant, real life programme.

(Kate Roche, Merseyside)

 

 

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My sister  and I listened with great interest to your programme yesterday. Jean’s story could have been our mother’s. Mum was diagnosed with Alzheimer’s in 2000 and is now approaching 93 years old. She fell and broke her hip while a resident in a care home some years ago and this particular care home refused to take her back because she needed more care than they were able to give. Hence she stayed in hospital for 8 to 10 weeks being shunted from one ward to another while Social Services decided what to do with her. Needless to say she deteriorated very rapidly while in the hospital. In the end we discovered that Social Services had done absolutely nothing to find a nursing home so we took it into our own hands and found the nursing home that she is now in.

 

She has had at least two bouts of pneumonia for which she was treated with antibiotics; various urine infections and stomach upsets (quite severe).  For the past four (+) years she has been bedridden, is doubly incontinent and completely without speech or recognition of her family. She is now in the most extreme foetal position with her knees and hands drawn up under her chin in the most grotesque fashion and can actually be positioned in her single bed sideways.

 

She is unable to swallow and her skin is breaking down which causes her much pain (obviously she can’t tell us this but her movements and facial expressions would imply this).

 

She has had no quality of life for the past few years and as one of your previous emailers said you would be considered extremely cruel if you kept an animal in this condition.

 

When death is the only release/relief she will find, why do the powers that be insist that nature must take its course?

 

As we think/hope Mum is now within the final few days of her life, your programme yesterday was particularly poignant.  It was good that you brought this particular illness to listeners’ attention and for that we thank you.

(Lizzy Drake)

 

 

 

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After listening to your very good programme on Dementia, I suggest a good follow up programme would be to look at the Ward C22 at Newcross Hospital in Wolverhampton. This ward specialises in Dementia (patients have underlying illness), Dr Leung is the consultant in charge, they have introduced many things like, large signs, labelled ward names, day rooms, garden, lots of activities, singing, crafts etc etc, there are also volunteers ( I have been one since the ward opened) who help in lots of areas of the ward.

 

This ward has won several awards since its opening.  This is the type of ward which should be in every hospital !! Ward C22 always has a waiting list to go onto the ward – this is what the future should be like in hospitals not only for the dementia patients but also for other patients at the hospital, Dr Leung has lots of statistics to show how this ward is not only helping Dementia patients but also other patients on other wards

 

A good follow up to your program to show what is being done and should be done in all hospitals.

 

(C Johnstone)

 

 

 

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Just heard todays episode –excellent and thought provoking (my sister in law has dementia; my advance directive is done!)

(Ruth Overington)

 

 

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I listened with interest to this morning's broadcast on Dementia, and in particular on the difficult decisions regarding treatment of other physical conditions the patient might have, especially with regard to 'end of life', and the thing that struck me most was that all those on your panel, and others interviewed are middle-aged, since it sounded as though they are working men and women, but you were discussing what are, by and large, the ancient – Jean, we were told, was 93 when she died earlier this year – and I don't think you necessarily saw it from the point of view of someone who could be 50 years older than any of you!

When my mother was in her eighties, she commented that the Bible had got it right when it talked about Man's Life Span being “three score years and ten”. She reckoned that one was pretty fit and well until then, but after that one began to be plagued with all sorts of aches and pains.

Being much younger, I laughed, but having now reached almost her age then, myself, I think she was right! She also said that she thought that as time goes by, from then on, one's fear of death fades into an acceptance that it is on the horizon, and that what one really hopes, is to be able to die peacefully in one's own bed - or as my sister said a couple of days ago, “What I'd really like, is to go to bed and wake up dead”.

Obviously I have no idea if this is a common attitude among the ancient – and I think perhaps, for most people, the difference between being 'old' and 'ancient' comes at about 80! – but I think it might well be, from what I have heard a good many people say, - it's the sort of thing one does hear at funerals!  BUT, obviously too, there are people who still have the vigour to do all sorts of things into their nineties, which is lovely, but their existence and opinion should not out-weigh that of those who aren't so sprightly.

All of you, panel and others interviewed, can expect to have many years of health and happiness ahead, hopefully unencumbered by even the relatively minor ailments that make doing ordinary things difficult and/or painful. I'm sure none of you can REALLY imagine saying you wish you could wake up dead – you all have far too much to live for!

But take Jean, the patient in the programme. She was in her eighties when she started to exhibit signs of dementia – which must have been absolutely terrifying, as her 'known' world turned into a world of increasing chaos, full of strangers doing strange things to her, and strange places where she didn't want to be – so her prognosis was that things could only get worse, and they did. Whether, when she was still 'with it ', she realised what was happening to her, and that she could only get worse, we weren't told, but those who do realise, might well wish 'to wake up dead'.

Everyone talks about 'quality of life', and for the majority of those below the age of 70 or 80, who have no underlying dreadful medical condition and have 'just' been involved in an accident or have non-malignant tumours etc, then their quality of life after successful resuscitation/surgery/course of antibiotics etc, should be fine, hopefully for years to come. For Jean, that was not the case. In her nineties, with progressing dementia, what was her ability to have a good 'quality of life' in the few years remaining to her? Virtually none I should have said. She would have had very little understanding of the world around her, let alone be able to enjoy it. Yes, 'a piece of music' might have given her pleasure – for how long? Half an hour? That's not 'life'. 'Life ' is a matter of all day every day.

I should like to see the words “THOU SHALT NOT KILL, BUT NEITHER STRIVE OFFICIOUSLY TO KEEP ALIVE” over the door of every Hospital ward, Nursing Home, Care Home and Hospice where the elderly, old, or ancient at the end of their lives, are being cared for. It is simple, clear, and wholly compassionate. Leaving Jean's battery to run down came into this category.

Following the horrendous experience of 'resuscitation' on a friend's mother (mercifully unsuccessful) I wrote to Dr Gill Turner, Vice-President for Clinical Quality at the British Geriatrics Society, and I very much hope that she will institute a wide consultation on better End of Life care, and in particular, resuscitation – such as an answer to the question “what do you resuscitate someone FOR?”  To be a 'cabbage', wholly dependent on others for every aspect of your life? What 'quality of life' is that? Pretty poor quality I should say.

If you haven't read it, Jennifer Worth's book, In the Midst of Life is well worth reading on this matter.

(Sally Spencer)

 

 

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I have just heard the very interesting programme about treating patients with dementia. My friend had heard it and suggested that I listen. My husband's story is almost the same as Jean's. He was taken down to theatre for a pacemaker last week, so I cut short my visit and left for home. While I was on the bus, the surgeon rang me and said he didn't want to do the operation because my husband's quality of life was nil, and nothing would be gained in the long run. I agreed with him.

 

But there are issues with his care. He has been in either hospitals or a care home since last October. I had to pay top-up fees for the care home. However, on 7 July the care home said they could no longer meet his needs, because he kept trying to stand up and as soon as he did so, he had a dizzy spell (maybe a fit or seizure, they said) and fell over.

 

So my key worker at Social Services has tried to find space in a nursing home, but tells me I might have to pay the full cost. This may be in excess of £400 per week, which I couldn't possibly pay.

There was a case a few years ago: Coughlan, which states that where a person's primary need is for health care, and that is why he is placed in nursing home accommodation, the NHS is responsible for the full cost of the package.

 

He was taken to hospital a few weeks ago after yet another fall. The hospital is much too far away, making it difficult to visit, and today he is being transferred to another hospital, equally difficult to get to. I don't know who to turn to for help, and wondered if your experts could advise.

(Anne Weyers)

 

 

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Thank you for airing this very difficult moral dilemma.

 

This programme was particularly poignant for me: my mother is now 93 and lives in a care home. She doesn't have dementia but is very confused, is now wheel-chair bound and doubly incontinent. She is no longer the woman I knew as mum and she would have been horrified if she had known that this is what her future would be.

 

I question the validity of putting pacemakers into elderly patients without any consideration of their situation and quality of life, as was the case with my mother. Before my mother had a pacemaker fitted three years ago, she was living in her own sheltered accommodation, with the support of carers and her family. My mother was struggling to move around and was becoming increasingly frail but she was able to live in her own flat, make her own decisions about what to eat, whether to watch TV and when to go to bed. One morning she slipped in the bath and her carer was unable to help her and so she called for an ambulance. When the paramedics arrived they checked her pulse etc and discovered that she had a very slow heart beat. I arrived just as they were taking her to hospital and was told that her condition was serious but quite common in people of her age.

 

She was hospitalised and had a pacemaker inserted. There was never any discussion about whether this was an appropriate decision, with any of us, including my mother. To cut a very long and upsetting series of events, short: my mother had a horrendous 3 weeks in hospital, being shunted from ward to ward. After her treatment she was sent home in a very frail condition, with carers providing after-care. This was a disaster and led to my mother becoming doubly incontinent as she could not get herself to the toilet without help. Her 'care' was also, so poor that two weeks after being sent home she was re-admitted to hospital and then never returned home.

 

What hospital staff/ doctors also fail to consider is the impact of being in hospital upon an elderly and frail patient. Elderly patients become very fearful and lose their confidence very quickly. One week after being sent home my mother found herself unable to walk at all, this was caused by the 'trauma' of her hospital stay. From that point on my mother has been unable to walk and is now wheel-chair bound, needing constant care.

 

Before my mother slipped in the bath she was able to live an independent life, albeit with support and a care package in place, after having a pace-maker fitted she now is doubly incontinent, wheel-chair bound and lives in a care home. If a pace maker had not been fitted my mother would have continued to live in her flat, semi-independently, as she wished and probably would have gone to bed one night and died peacefully in her sleep. I know what choice she would have made, if it had been offered to her.

 

It is appropriate that elderly people are still offered treatment but let's be sensible about treatment and look at the whole patient. I don't know anyone who wants to live to 93 in the state my mother is in now. To be honest, I am terrified that my mother's situation could be mine and I am determined to ensure I have enough money to take myself off to Switzerland, if needs be, to ensure I have a dignified end to my life. Keeping people alive isn't the priority, the most important thing is quality of life.

(Mrs D A Lucas)

 

 

 

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I was so interested to hear the programme this morning regarding the elderly woman with dementia and the sensible and obviously correct decision not to renew her pacemaker.   I was a nurse and midwife and now an Episcopalian Priest - and my ministry brings me into contact with many, mostly women, with dementia in our number of care homes in this area. 

 

I had a dreadful experience with my aunt who eventually died two years ago.  In the early stages of dementia and not coping with her finances I suggested that she spoke to her solicitors regarding power of attorney which I think we both assumed would be just for her finances.  She lived in Sussex and I in Scotland but I had always promised to care for her if need be, having been a nurse myself.  The solicitor duly organised full power of attorney which she signed - and to my horror it turned out that I had absolutely no say in her health and welfare and I am pretty sure that my aunt did not realise this either.   This led to my contacting them many times and the story is too long to give all the details but in the end they got her into an expensive nursing home transferring her from Hospital -  it was one not on a bus route so her old friends could not easily visit unless driven there, despite my asking for her to be in a Care Home so people could go by bus - as a result she was rarely visited.   I even suggested that we got her up to Scotland to one of the Care Homes here so I could visit her and take her out etc.   They said it was not in her best interests - a common response from them! 

 

I was convinced that the pain she was experiencing was quite probably due to cancer and not "just old age" and despite being in Hospital for a long time because of falling, with also ongoing rehabilitation and ending up with a third degree sacral pressure sore, no scan was done to see what might be causing the pain.  During the "rehab" she fell twice, once fracturing her pelvis and once dislocating her shoulder - each time she was sent back to the Hospital.  They decided that the fracture was possibly due to cancer secondaries.   However the GP attached to the Care Home agreed it would be helpful to have a proper diagnosis, he arranged for a scan and she was found to have a large tumour on her sacrum and he agreed that she needed palliative care.  

 

Thinking of the ethics committee and decisions to be made - I agreed with the GP and the Nursing Home that she should remain there and not be transferred to hospital if she became ill and no resuscitation etc - strictly speaking because of the full POA I really had no say about this!   Her dementia was very advanced by this time, she was not able to feed herself, her aggression had gone and she was confined to bed all the time. 

 

Eventually she developed pneumonia and the nurse on duty over the weekend called the paramedics and she was transferred to hospital and the registrar contacted me and said she felt it would be in my aunt's best interest to let nature take its own course and I absolutely agreed.  I felt it would be just a matter of days before she died and I arranged to go down to see her - this was Sunday.   I phoned the ward a couple of times on Monday and they said she was comfortable, but late evening I phoned again and was told that she had an antibiotic infusion in progress.   Apparently the solicitors had telephoned in the morning and said that she had to be treated.    When I got to the hospital I spoke to the senior house officer who said unfortunately this was a not an uncommon problem with that particular large firm of solicitors and he suggested that I wrote a letter to the Consultant which I did.  

 

She recovered from the chest infection but apparently lost the ability to swallow and was eventually discharged to the Care Home - by which time the hospital team, with the solicitor's representative, agreed that the Liverpool Care Pathway should be used.  The ward sister wanted to send me a copy but the solicitor's office apparently said it was none of my business!  She did anyway.    I actually spoke to my aunt's Solicitor regarding the situation and said that I wished she had had a living will, and he said they were on the whole useless as every situation could not be covered - which I think was sort of mentioned in the programme today.   My aunt eventually died about 2 months later to my great relief. 

 

My aunt was never married, had no children and none of her nieces and nephews lived locally so one can see that having a full power of attorney with the solicitor had merit - what should have happened, as the solicitor knew that my aunt considered me to be her next of kin, they should have advised her to have me included in the POA, at least for health and welfare. This is certainly something I plan to do, to make sure my niece or step daughter have some say in my care should I develop dementia. 

 

Apologies for the long story, but perhaps my point of writing is really about the power of attorney and the end of life directive - to make it quite clear to the general public that it needs very careful scrutiny.   At the moment I am not sure what the law is in Scotland about either of these and quite probably different from England.  My aunt definitely would not have wanted things to go the way they did if she had still had her mental capacity. 

(Revd Denise Herbert, Fife, Scotland)

 

 

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Thank you for a thoughtful programme on the day I am completing the online Power of Attorney forms for my in-laws.

 

I've concluded we should do this at all ages, so I will put them in place for my wife and I, and I will encourage my children to do the same when they get married and make their wills. It's a safety net not just for the old. I highly recommend the online service; it’s very clear and excellent for multiple registrations: https://www.gov.uk/power-of-attorney

 

At aged 61 I am astonished at the number of people older than me with even older parents, so dementia is an increasing topic of conversation, and while the outcome of the case discussed seemed obvious perhaps a less clear cut example would have better represented the issues facing a health services having to make increasing volumes of intervene/don't intervene decisions.

 

I am in rude health, but wouldn't be surprised if, like just about all my contemporaries, I start a daily or weekly intervention regime; most likely popping pills of one kind or another. However after your programme I will ask the medic offering it for an end date, or the appropriate circumstances to stop taking them. I don't expect a coherent answer, other than 'the rest of your life'!

(Ged Parker)

 

 

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How apposite this morning’s programme has been for my mother and myself.

 

A few days ago my 99 year-old mother, Helena, fell yet again. The resulting bumps and bruising on the side of her face and forehead are shocking. This fall is the latest in a number over the past three years. Two years ago she fractured her pelvis. Her pain is constant.

 

Our visits to A&E are almost routine. I chivvy the overstretched, harassed staff there to take a rather more urgent interest so that we may leave, but there are children and very inebriated people to tend, too. Mother waits on the trolley with outward equanimity, but she is hiding a terror of hospitals and does not want to be admitted to a ward. 

 

My mother wears two hearing aids and spectacles. Her poor hearing means she seems slow to understand what nurses and doctors ask of her. I’m convinced that very elderly deaf people may be diagnosed as being demented when, quite simply, they cannot hear. But she does understand. Her short term memory is rather poor. She certainly doesn’t have the intellectual capacity that she had even five years ago.  I understand that many medics would rate my mother’s intellectual capacity and her quality of life as very poor even without the latest injury. I do, too.

 

Nevertheless, Helena’s iron will nurtures an indomitable life force that encourages her to try to walk and to be independent. She speaks of the kindness of her carers, enjoys visits to the local ice cream parlour, loves hearing about her five great grandchildren and looks forward to outings.

 

Her quality of life is wonderful, she would say. She still loves life, so I carry on chivvying all those who are directly involved in her care because she wants to continue living. Who am I, as the person who might know her best, to determine that she no longer has a life that’s worth continuing? I have, though, instigated a DNR order to be included in her medical notes.

 

She is kind to her carers, never complains, is interested in her nearest and dearest. She says she loves life. These are all fashionably undervalued and small motives for wanting to live a life, and being ’nice’ to everyone is part of her belief in living a good life. 

 

She has no intention of dying yet, non-assisted or otherwise, and looks forward, albeit slightly awe-struck (as does her family) to her 100th birthday early in 2015.

(Hilary Paviour)

 

 

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Thanks for exploring this topic.

 

Despite my having a professional background in both Care & Ethics, I and my brother (who is a University lecturer to Medics and Nurses) struggle with issues about our father's care. In our case it is the challenges associated with preventing his transfer from the specialist dementia residential home, where he has lived for many years,  to what would be a more generalist nursing home.

 

So far, our arguments have prevailed, but they are finely balanced, and the decision to keep him where he is, which is costly and legally precarious ( as nurses are being employed by the NHS, locally, to augment his care whilst he stays in his Local Authority setting) is subject to  regular review.

There aren't any easy answers, but regarding the dilemma you portrayed, I think the decision not to replace the pacemaker was the most humanitarian and caring. Despite it being a different issue, listening to your programme helped me to feel less isolated, regarding the situation with my father.

Thanks for an interesting programme, especially also to the family and practitioners. It can't be easy to be exposed to public scrutiny in a radio programme, where such emotionally charged real-life dilemmas are clarified.

(Ian S. Rickard)

 

 

 

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Thank you for your excellent programme ‘Living with Dementia’, to which I listened with great interest. My own mother bravely precipitated her own death (she died in 2009 at the age of 95) by categorically refusing a new pacemaker. Unlike the lady discussed in your programme, she had been compos mentis to the very end but had endured years of excruciating pain caused by her osteoarthritis (at least this is what the medics told us). She HAD, by the way, made a living will and expressed her total determination, totally lucidly, not to have her life prolonged to all concerned. But my point is slightly different: the opponents of the assisted-dying legislation claim that modern medicine eases suffering by controlling pain effectively. Nonsense – it DOES NOT! My poor mother had been in pain for years, and this wonderful modern medicine was unable to offer her effective pain relief. She kept asking: ‘Have they legalised euthanasia yet?” while bravely enduring her pain (even though she was on morphine for the past five years of her life). So when she was told her pacemaker battery was running out, she leapt at the chance of not having it replaced. Since she was suffering from ‘a complete heart block’, she hoped she would die as soon as the battery ran out – and this is exactly what happened (she just toppled over while sitting at the table at home – she was living with us – and eating her dinner). I would greatly welcome a debate on the extent to which modern medicine is, in fact, able to control

(Anna Nolan)

 

 

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I have a personal and professional interest in the topic of Alzheimer's and end-of-life experiences and thought the programme this morning was excellent. It covered all the main issues in depth, thoughtfully and sensitively. My mother had Alzheimer's and I agree with the panel that people with dementia perceive their lives as being more positive than their relatives do. Being a psychotherapist I wonder if we project our difficulties about dealing with our loved ones' problems on to them. The panel also reminded us that the person in still there despite having lost many of their faculties. It is this, the person, that we should seek to find and with whom we can continue to connect, right to the end. In this shared space love can abound. Despite my years of exposure to this subject I shed a tear at the end of this programme. Thank you!

 

My mother retained her faculty of speech, all be it limited, till the end and through gentle conversation she told me what she was experiencing, giving me great insight into the late stage of this disease. I recorded our conversations for three and a half years and these now form the heart of my book, The Gift of Alzheimer's. Since then I have continued to research and have found many of the things that I noted at the time have subsequently been explained by research in neuroscience.

(Maggie La Tourelle)

 

 

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Thank you for your programme. I listened with interest as my mother is in the final stages of her life and has severe dementia. My current dilemma is that there is nothing wrong with her which is life threatening so she exists, in bed, with no ability to eat, drink, move or do anything herself. She has no ability to communicate, doesn't even acknowledge our existence. She is fed, given fluid with gel added to stop her choking, she is incontinent too. Recently her swallowing reflex is intermittently failing so she goes for long periods without taking fluids. This is agonising to witness as she is obviously thirsty so the care staff offer fluids regularly, however, if she takes it she chokes and they have to aspirate her, which is very distressing for her.

 

My opinion is that she should be allowed to pass away peacefully, I'm sure this is what she would want. Giving fluids at this stage is prolonging the agony. Her diamorphine has been increased to prevent her being too aware of her discomfort, but not enough to allow her to pass away peacefully if her fluids were stopped. Each time she manages to take some fluids I know that she will have to endure another few days of hell.

 

Why can't we be allowed to administer enough morphine to let her go in peace? Surely this would be kinder. No animal would be allowed to suffer like this!

(Lesley Trett)

 

 

 

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Thank you for an interesting programme. I was particularly interested in the topics of advance decisions and lasting power of attorney as I was faced with this dilemma when my mother became ill with frontal lobe dementia.

 

Thinking we were preparing adequately for the event when my mother became unable to care for herself my mother, my sister and I discussed this possibility while my mother was still fully able, and came to the decision that power of attorney for health and wellbeing and finance would be sensible for my sister and I in order to give Mum the care she wished for. That was for her to come and live with me, a trained nurse, to be cared for by me and to die in our home.

 

This turned out to be the worst decision as the two LPA’s were perceived as a ‘conflict of interest’ by my mother’s NHS carers. They accused me of financial abuse because I cancelled some short visit care that was inconvenient and unwanted care recommended by social services, because I preferred to save Mum’s very limited savings for respite care and longer visit daily care which was more useful to me, but which the social services did not know about at the time.

 

The end result was that my mother was removed from my care and placed in a home which was exactly what she did not want. I was able to get no legal advice or support as no-one appeared to want to challenge the social services. This needs to be emphasized to future family carers and advice of advance decision be recommended instead of LPA for Health and Wellbeing.

This all happened nearly 3 years ago and I still feel traumatised by the events, particularly the lack of support and legal advice, and more importantly the feeling that I let my mother down terribly. She  died in the nursing home.

 

I would so like to let other family carers know about this possibility to prevent a similar thing happen to them. Let’s have more programmes around this topic to inform people about dementia and its consequences.

(Brenda Robertson)

 

 

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I cannot thank you enough for the content of this programme, the presentation helped me, as a layperson understand all the problems related to dementia, apart from the obvious one of memory loss. 

 

My mother is 86 and has recently had a pacemaker fitted, apart from this she is thankfully in good health however, as the team explained other health problems could present themselves over the years as the ageing process continues, and your programme has given me direction into what we (she and I) may need to consider and the options we have.

 

Many thanks again for the way you dealt with such a sensitive subject.

(Jeanette Morgan)

 

 

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This is already an excellent programme, but I stood still in my kitchen for the entire time this morning....Joan has a wonderful, clear and insightful way of managing the dialogue on this amazingly complicated topic of dementia....a dear friend (copied) has just lost her mother to this awful and slow and emotionally painful disease. My father recently died in the ICU after 6 days post cardiac arrest (heart failure and 10 tablets a day for 2/3 years) and we did switch off the ventilator in a joint decision with the wonderful team there......Clare's mother was able to die at home (her mother's wish) not without lots of anguish and emotional turmoil...

THANK YOU - Radio 4 at its very best

(Angela Dymoke)

 

 

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I don’t know at 75 years what I would want at 90 with dementia. I know I need lots of stimulation in activities now though I am in great pain; discomfort & mobility is getting worse. Maybe dementia patients don't have enough stimulation to keep them going. Most of my life was boring & lonely and its only at this end of my life that life is really worth living, I am at last doing what I want to do, so don't dump me yet.

 

Recently I drew a portrait of a person with dementia who arrived at our disabled class. He was overjoyed & preened whilst posing for me. I did it to include him in our group as he couldn't speak. I don't like my portrait being taken or drawn. So it’s different for all of us.

 

My mother didn't have a life or death choice as the nurses in the hospital in North West London decided she wasn't worth keeping alive & moved her on out of this life, dropping her on the floor & smashing her face in, taking her warm clothes away & opening the window so she got pneumonia. My brother’s grief having taken care of her at great personal expense to himself is still one of great anger, taken out against me. So our family is destroyed too.

 

Nobody has the right to end your life deliberately, let us take our chances in the least harmful way possible

(D. Watkins)

 

 

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Thank you for an excellent programme.

 

A very important issue handled with balance, real humanity and common sense.

 

This is what the BBC should be proud of.

(Luke Warm)

 

 

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Today's programme brings back the experience with my mother, who passed away peacefully nearly 3 years ago age 98, and had many years before signed an Enduring Power of Attorney in favour of my brother and myself - but I am appalled at the situation that you describe, because my mother's downhill path was managed much much better. It involved a combination of:

- North Somerset Social Services throughout (including providing funding);

- after a short period in a not very good care home (at a time when Mum was still fully capable of telling me that she did not want to live with mad people) an excellent diagnosis by the Avon and Wiltshire Mental Health Partnership Trust (followed up by an MRI scan for confirmation and the prescription by the Trust of very effective medication that the GP was not allowed to prescribe);

- an excellent privately owned care home until her increasing physical frailty meant that they could not keep her;

- finally a newly developing care home designed and run on Australian lines by St Monica Trust with support from the Mental Health Partnership Trust (including providing specialist nurses on secondment);

- very little intervention, a declaration by the family of 'Do Not Resuscitate', and a peaceful end.

OK, no illness requiring intervention, so an easier path than the one that you described, and part of Mum's brain was still capable of decision making and of appreciating the excellent care given to her - but the doctors did what we wanted, not what they might have wanted to do. The irony is that that Health Trust is always under threat of being closed down because it doesn't fit the administrative pattern that top managers want to impose... CQC is studying that Trust, and so I have written to them explaining how the Trust's assistance, at low cost, was a key factor in a good death.

(Peter Tomlinson)

 

 

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I have listened to a few of your really interesting programmes. I may have missed this, but I think a much more in depth discussion of the law around people without capacity would be interesting and helpful. My Mum is now in a vegetative state, following herpes encephalitis. I was astonished to discover the legal position that in the absence of a power of attorney I have no decision making capacity on my Mum's behalf. As an ex-lawyer, I had no idea that this was the position and a straw poll amongst my friends demonstrates the same lack of awareness. We all assume that as next of kin we have rights - but we don't. We only have the right to be consulted; the decision is actually that of the medical team. There is guidance around the 'best interests' concept - but not really unpicking what this means. In my view, the medical team's role should be to give advice; the people best placed to decide on a person's 'best interests' are surely the family, taking into account the medical advice. The current law seems to me to enshrine an outdated paternalistic attitude that we lay people are not capable of making decisions or taking responsibility. Indeed I have been patronised by a range of doctors during discussions of 'escalations of care' who have told me that it's best for me to have the 'burden of responsibility' taken off my shoulders. I actually think that the medical team should have the burden of responsibility taken away from them. In retrospect I wish so much that we had done a power of attorney; your recent discussion of advance directives did not mention powers of attorney - the latter are far more useful. Advance decisions require a level of specificity while a power of attorney simply would have put me in my Mum's place for all decision making.

(Sarah Morpeth)

 

 

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No wonder the NHS is collapsing with 80 year olds lives just revolving around hospital appointments!

(Jan Womack)

 

ENDS

Downloaded from www.bbc.co.uk/radio4 

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.  BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

 

 

INSIDE THE ETHICS COMMITTEE

 

Programme 3 – Dementia

 

TX:  31.07.14 

 

PRESENTER:  JOAN BAKEWELL

 

PRODUCER:  BETH EASTWOOD

 

 

 

Bakewell

Medicine now helps people live longer with conditions that arise later in life but don’t kill us outright – diabetes, heart problems.  But as we get more and more frail how do we decide when to treat the illnesses that crop up?   The decision becomes particularly difficult when someone has dementia and eventually can’t decide for themselves. 

 

Welcome to Inside the Ethics Committee.

 

Our story begins in the year 2000 when Jean and Arthur are both 80 years old.  Arthur has ongoing heart problems so they move to live near their daughter Sarah so she can help out day to day.

 

Sarah

They were living in a flat near us and they were managing very well, they were involved in the community, my father did painting lessons, my mum was in the women’s club, they’d made lots of friends, they were settled, they were very happy there.

 

Bakewell

Neither Jean nor Arthur can drive, so Sarah helps out with the shopping and takes her dad to his hospital appointments.  On one particular occasion, when he’s been kept in overnight, Sarah takes her mother to visit him and notices something different.

 

Sarah

I went to visit the hospital with my mother and noticed that she was struggling to keep up with me, which was unusual and she was very, very breathless.  So she then went to the hospital and they found her pulse was very low and realised that she needed to have a pacemaker.

 

Bakewell

Pacemakers are mainly fitted in elderly patients when the ageing heart develops problems, as is the case with Jean.

 

Cardiologist

The problem was the top part of the heart was firing off but the signals weren’t getting to the bottom part of the heart and so her heart was going very slowly.  So for her the pacemaker was putting some extra signals in to speed her heart up and make it go at a normal rate.

 

Bakewell

Fitting a pacemaker is a surprisingly straight forward procedure.

 

Cardiologist

She had a little bit of local anaesthetic put in near the shoulder, an incision made which was about two inches long and you make a little pocket under the skin and you find a vein under there and you slip a couple of wires in, they go down into the heart and then there’s a few stitches and people can usually go home the same day or the following day.

 

Bakewell

Jean stays overnight and is soon back to her old self busy with her family and with the community.

 

Sarah

She seemed very well after that, back to normal really, as though nothing had happened really, it was very successful.

 

Bakewell

For the next five years things go well. Jean and Arthur continue to live independently with Sarah and her husband helping out with the shopping and hospital visits.  But in 2006, when they are both 86, Sarah notices a change in her mother.

 

Sarah

Mum has always read books, done puzzles, word searchers and her concentration started to go and I noticed that she wasn’t reading books because I’d read one passage over to her and vice versa and she wasn’t able to do that.  We were getting very confused about shopping – I was having to check what was in the fridge because there was stuff in there that was out of date.  And you start putting in things to make that right, like buying meals that they can take out the freezer and reheat in the microwave.  That worked for a while, then it was down to meals on wheels.  Then we were getting a home help in and then eventually they went to a day centre a couple of days and had a meal there.  And all these things worked for a while.

 

Bakewell

But her father Arthur’s hospital visits are getting more frequent and as Jean is getting increasingly confused, she’s no longer able to look after him.  Sarah is aware that a role reversal is taking place between her parents, the caring role passing from her mother to her father but he’s too frail to cope.

 

Sarah

We were worried that the pressure of looking after my mother was putting pressure on him. And then she got to the point where at times she wouldn’t recognise him.

 

Sarah’s husband

You go through this stage where you just put it down to forgetfulness in old age.

 

Bakewell

Sarah’s husband.

 

Sarah’s husband

It was only when we started getting lots of phone calls from them saying there’s a strange man in my house, what’s this man doing, that you realise that something really fundamental is wrong.

 

Bakewell

It’s very difficult for the family but also for Jean herself.

 

Sarah’s husband

She was quite aware that something was happening but wasn’t quite sure and she was trying to cover it up quite a lot.  You ask her well where are you and she’d say well where do you think I am.

 

Bakewell

Sarah and her husband are concerned that Jean has dementia.  An assessment reveals that they’re right.   Around the same time, Arthur collapses and is admitted to hospital.  Sarah decides to move her mother in to live with her.

 

After several weeks, Arthur is discharged from hospital but is now too frail to live independently.  So, to keep her parents together, Sarah moves them both into a care home.  But just four months later, at the start of 2008, her father collapses again and dies.

 

Sarah

Mum was there when he died because I fetched her, she went to the funeral but the awful thing was after that she never once asked me about him, it was almost as though she’d forgotten him which I find very difficult actually.

 

Bakewell

Joining me to discuss Jean’s story so far are:  James Beattie, a Cardiologist at the Heart of England NHS Foundation Trust in Birmingham, who has a particular interest in end of life care.  And Liz Sampson, an Old Age Psychiatrist and a researcher at University College London looking at the end of life care in people with dementia.

 

Liz, first of all, what is dementia?

 

Sampson

Dementia is a progressive disease where brain cells die and it affects multiple areas of the brain, so it can affect someone’s memory and that’s the most commonly recognised symptom.  But it also affects people’s judgement and their more complex thinking processes and as it advances it affects people’s ability to care for themselves, simple day to day tasks which require coordination like washing and dressing.

 

Bakewell

So is it an illness or is it a natural part of ageing?

 

Sampson

Dementia is an illness, it’s not a normal consequence of ageing.  So we know about one in five people over the age of 80 will have dementia, that means four in five people won’t.  All of us gets slightly memory problems and our memory gets less efficient as we get older but dementia is a syndrome of problems where we have memory problems plus difficulties with our day to day function, behaviour, personality change.

 

Bakewell

What treatments are available for dementia?

 

Sampson

Well unfortunately we don’t have any treatments that will alter the underlying loss of brain cells and disease process.  We do have some drugs available that can improve symptoms of memory loss, may improve day to day function and may help with some of the behavioural and psychological difficulties that people have.  And there’s some evidence that they give people a limited amount of independent life at home.  Other treatments are available as well and it’s really important to think about psychological and social support.

 

Bakewell

Now we heard that Jean tried to disguise it from her daughter, is that common?

 

Sampson

I think it is but I think it’s important to realise that that’s not usually a deliberate attempt, our brains are quite sophisticated, they like to fill in the gaps and give the whole picture, so I think it’s quite normal for people to just try and carry on as normal and to make up for little mistakes.

 

Bakewell

And how good are we at diagnosing it?

 

Sampson

We’re getting better, there’s been a huge push on increasing dementia diagnosis rates in this country recently although we still have quite a way to go.

 

Bakewell

And how important is it that you know or that your family know that you have dementia?

 

Sampson

Most people would say that although a diagnosis of dementia is a very frightening and distressing thing to hear it’s better to know because you can start making plans for the future.  It might help you plan where you might want to live, it might help you plan to have treatment that you need, so in some areas of the country people are able to have dental treatment so their teeth are fixed, so that they don’t then have to have lots of dental treatment and dentures when they get to an advanced stage of dementia.  But it’s more than about just having treatment, it’s about being able to access care and support psychologically as well.

 

Bakewell

Now Jim, we’ve heard that Jean had five good years, that’s much to the credit of the pacemaker that she had, so is that what usually happens?

 

Beattie

Yes pacemakers are relatively simple to manage and pacemakers last perhaps eight to 10 years, depending on how often the heart requires to get the impulse and how fast the battery wears down.

 

Bakewell

So people are living much, much longer because of the help you can give them.

 

Beattie

Yes pacemaker therapy is very routine in this country and the target implant rate for the UK is 700 per million population.  So we have about 30,000 new pacemakers per year in the UK.

 

Bakewell

So here we have a situation of because of the technological improvement people are living much longer but they’re starting to get other problems.

 

Beattie

The living legacy of successful intervention.

 

Bakewell

You’re smiling as you say it because we’re pleased that people live longer but it is a paradox isn’t it, it is a dilemma now?

 

Beattie

It makes living longer but more complicated and that’s the trade-off.

 

Bakewell

It’s a trade-off that we have to deal with and that presumably Liz, you’ve got to examine in terms of what’s going to happen to older people?

 

Sampson

I think it is, we’ve seen a big shift now and obviously a 100 years ago many people died in infancy, young ages from infectious diseases, then we had a shift towards people dying more from heart attacks, strokes, we’re getting better at preventing heart attacks and strokes, so people then live longer.  And now we’re getting better at treating cancer and people are living longer as well.  And so really the neurodegenerative diseases are the next diseases that come in as you live longer.

 

Bakewell

So that progress involves critical problems arising that hadn’t arisen before and that’s what we’re tackling right here and now?

 

Sampson

Absolutely, it’s a trade-off, yes.

 

Bakewell

Right well let’s get back to the story because following Arthur’s death, Jean remains in the care home.  But the staff are struggling to cope with her – she keeps wandering off and leaving through the fire door.  And her mood is volatile – she can be suddenly aggressive.  Her daughter Sarah moves her into another care home which specialises in looking after people with dementia.  The GP there.

 

GP

Communication was even by that time getting difficult and she tended to use just a few words – yes, no – shake her head or nod. 

 

Sarah

Initially when I went she would recognise me.

 

Sarah’s husband

And you could have a conversation with her, not a very long conversation but at the same time something would switch, obviously in her mind, and she could become quite aggressive.

 

Bakewell

Jean finds personal intervention by the care staff difficult.

 

GP

She would frequently resist attempts to assist her when undressing, cleaning, washing, such that the staff did frequently suffer bruising and scratching.

 

Sarah

They said that that’s what she hated in the home was the personal intervention – the washing, the bathing, the changing, the toilet and all that.  If you look at her when she was early 80s she was a very smart, well dressed lady, loved shopping, loved buying clothes and then you’re reduced to that and I can imagine that she would absolutely hate it.

 

GP

Distress during personal intervention is a very common problem that we see for patients with moderate and severe dementia.  And it is remarkable in a way how well care staff deal with what can be quite difficult situations.

 

Sarah

You never knew how she was going to be.

 

Sarah’s husband

I can remember her pinching me and she’d be obsessed with my shoes.  But at that time you could at least have a conversation and she did recognise you when we first went in.

 

Bakewell

But over the next year Jean’s dementia gets worse, robbing her of much of what remains of the personality her family had known.

 

GP

Verbal communication was less and less possible and it was difficult to get any clear indication as to her feelings.

 

Bakewell

Jean is also becoming physically frail.  She fractures her hip and is admitted to hospital to have it repaired. It’s a harrowing experience for her daughter Sarah who quickly realises that the hospital struggles to cope with patients with dementia.

 

Sarah

I was worried about her not eating because I’d go and find food just left in front of her, she couldn’t feed herself at the time.  So I was going in at mealtimes to make sure that she had food.  I remember her being in the bed at one point soaking wet because they were struggling to cope with her because she was so aggressive because she didn’t know where she was, who were these people, that she was in pain, that were poking and so they found her very difficult to manage.

 

Bakewell

And the GP is all too familiar with this state of affairs.

 

GP

Hospitals are not necessarily geared up to looking after patients with dementia and this can be a concern.  If the hospital does not have staff that have understanding of this it can lead to patients becoming increasingly distressed, can also affect nutrition but also poor nutrition can significantly impact a patient’s ability to fight infection.  So that they may deteriorate rather than improve.

 

Bakewell

Jean returns to live at the care home where all frail residents are regularly assessed to determine whether resuscitation, following a heart attack, would be appropriate. The GP discusses Jean’s situation with her daughter and the staff.

 

GP

We all felt, in Jean’s case, successful resuscitation would be highly unlikely and also was not in her best interests.

 

Bakewell

The family feel the same.

 

Sarah

To resuscitate her is just prolonging the dementia, so I thought that was probably a good way for her to end her life, a natural way.  And I’m sure that’s what she would have wanted.

 

Bakewell

Yet at the same time, the medical profession continues to intervene to prolong Jean’s life when the situation arises.  For example she receives a yearly flu vaccine.

 

Sarah

She had the flu jab because I remember joking with them saying well if you can give it to her I’m more than happy for her to have it.  But she could be a bit of a tartar at times, so if she didn’t want something she would give them hell.  And she had a couple of urine infections, so obviously had the medication for that.

 

Sarah’s husband

And when she fell and broke her hip as well.  So there’s quite a substantial amount of intervention in those years.

 

Sarah

Yes.

 

Bakewell

Most of these interventions are given to Jean to restore her health.  Yet many of the treatments older people receive are not in themselves remedies, but simply prolong life. The geriatrician:

 

Geriatrician

So there are lots and lots of people with dementia who are taking drugs every day that are not designed to make them feel better but are designed to make them live longer.  So that would be all the blood pressure medications for example, all the statins, the aspirin and having a flu vaccine every year, it doesn’t make you feel better but the aim is that it should make you live longer.  And they’re not always as carefully considered as they should be, we’re living in a world where we’re under huge pressure to treat various chronic conditions according to national guidelines, the guidelines are developed based on very large research trials that absolutely do not include frail, old demented people and are therefore not really applicable to them but at the same time we really don’t want to deny people important treatments and at the moment I think a lot of people are finding it very difficult to find a balance between not denying people treatment just because they are old or because they are frail or because they’re demented but equally not burdening them with treatment that might keep them alive for longer than they actually want to be alive.

 

Bakewell

So in frail older people with advanced dementia, like Jean, who can’t speak for herself, when is it ethical to treat the illnesses that crop up, and when should we let nature take its course? 

 

Well let’s resume out discussion because it’s getting more interesting now.  How do you reconcile this business Jim between the natural frailties of old age with the onset of dementia?

 

Beattie

These are difficult issues because in clinical medicine we tend to reconcile, certainly within the specialties, it may be a little bit different in elderly care medicine, sometimes at the expense of what is really happening.

 

Bakewell

So Liz, how often does it happen that people with dementia just end up in hospital wards?

 

Sampson

It’s very common the research that we’ve done shows that at least 40% of older people in hospitals will have some form of dementia. 

 

Bakewell

And they’re not there because of the dementia?

 

Sampson

No, no they’re usually there for other reasons.  So like with Jean they may have a urinary tract infection, they may have a chest infection or a whole range of other medical problems that have brought them in to the hospital.

 

Bakewell

Now you’ve done work on this, so what are you discovering all the time?

 

Sampson

Well we’re finding, as the people you interviewed alluded to, that the hospital’s a very difficult environment for someone with dementia – it’s noisy, sometimes the lights are on all night, it’s an unfamiliar environment – it’s very challenging.

 

Bakewell

What impact does that have on them?

 

Sampson

They are at risk of infections and falls and they are at risk of having longer hospital stays compared to people without dementia, you might find that someone loses function, they may lose their previous ability to wash or dress themselves, they may become incontinent because they can’t find the toilet.  And they may be at risk of being prescribed antipsychotic medication which can have quite serious side effects to calm down the behavioural problems that they’re having.  Also they’re much more at risk of being placed in a care home or residential home after they’ve been in hospital.

 

Bakewell

It sounds totally inappropriate.

 

Sampson

We have to be careful there.  It is inappropriate for some people with dementia to be in hospital but sometimes they’re ill and they need to be in hospital.  So in a way we need to think about whether or not the hospital environment should be adapted better for people with dementia.

 

Bakewell

Right well, joining the discussion now is Penney Lewis, Co-Director of the Centre of Medical Law and Ethics at Kings College London.  I want to know whether there’s a legal obligation to treat these physical illnesses in people who are frail and have dementia.

 

Lewis

There is no legal obligation to provide any particular treatment to anyone but in patients who don’t have capacity to make their own decisions you should only provide treatment that is in their best interests.  So as the family members mentioned we need to decide in a case like this what is in Jean’s best interest and you have to do that for each potential intervention.  So for the flu vaccine, for the antibiotics, for the urinary tract infection – is this in her best interest, considering all of the circumstances including the patient’s wishes and feelings, beliefs and values, any statements that they might have made before they lost capacity to make their own decisions or even while they have no capacity to make their own decisions and you have to consult those who care about them in order to try and assess what their best interests are.

 

Bakewell

Liz, how do you decide when to intervene in this stage?

 

Sampson

I think it’s very difficult, it’s very important to take a step back and think about the quality of life that the person has and aspects that we may not always consider, the fact that you want to keep someone comfortable rather than making an intervention just for the reason to prolong their life.

 

Bakewell

What about something like resuscitation, Jim, that concerns you, when is resuscitation appropriate and when is it not appropriate?

 

Beattie

The difficulty with resuscitation is becomes the default position for the most part and people do not step back and look at the overall picture.  In a general hospital the chance of leaving hospital after resuscitation are about 5%...

 

Bakewell

Oh as low as that?

 

Beattie

In the general medical and elderly population.  I mean people have a feeling from Casualty or ER and all these things that it’s a quick resuscitation and you marry the surgeon then you go home.  That doesn’t really happen.

 

Bakewell

So resuscitation is much more serious and it would affect elderly people badly?

 

Beattie

Someone who is in hospital, particularly the elderly, with multiple core morbidities, if they have a cardiac arrest it’s a sign of decline, it’s just their act of dying and it should not be a resuscitation, it should – allowed to die.

 

Bakewell

Alright but what about a little intervention, what about a yearly flu jab – is that appropriate?

 

Sampson

I think that’s very, very difficult and there’s no clear guidance on that at the moment.  Some nursing homes will vaccinate all of their residents, so it’s done in the best interests of the wider population of the care home but sometimes having flu, dying from pneumonia may actually allow you to have a natural death.  I think ideally we should be discussing these vaccination decisions more with families and relatives.

 

Bakewell

I just want to have a general discussion really about the problem for society here.  We’ve got a real paradox haven’t we – we’ve got the technologies and the treatments which we regard as a great success and we’re enormously proud that people are living longer and indeed so are the people – I’m one of them – but when you get these dreadful illnesses you’re piling up enormous dilemmas and there’s no resolution, are we going to go on like that?

 

Beattie

I think it’s attitudinal because society these days is much less familiar with death.  Our great grandparents and to some extent our grandparents grew up with people dying before antibiotics and so on and that is denied these days, and people died at home.  Death is now becoming lodged in hospitals or lodged in care homes, so somewhere remote from the family, remote from the home, therefore that familiarity has been lost.  And we need to make it a more natural expectation if you like – life has a 100% mortality and we need to get used to that.

 

Bakewell

Well let’s move on with our story now because it’s now early 2012… Jean is now 92.  A new issue arises, this time for the cardiologist who runs the pacemaking service for the region.  He oversees two and half thousand patients with pacemakers, including Jean.  The pacing technicians visit Jean at the home each year to check the battery on the pacemaker she had fitted 10 years ago.  The battery check is easy but not with Jean.

 

Cardiologist

They’d had real problems just checking the battery and because she was confused and had dementia she would fight the pacing techs off.  With the help of the staff from the home they managed to get the device on that allows us to read how much battery life is left, it doesn’t take very long, it takes a minute or so and they could work out from that that there was very little battery life left in the pacemaker.  And they said well this lady, her battery’s running out she needs a box change but there’s all this going on, how are we going to do that.

 

Bakewell

Changing the box containing the battery usually takes 20 minutes under local anaesthetic at the hospital.  The box, lies just beneath the skin on the chest, and is the size of a large coin.

 

Cardiologist

It contains the battery and it contains the fancy electronics that decide to do all the pacing.  Make a little incision take it out, unscrew the leads, put a new box on, screw the leads back in.  And you can literally then slide the box between the skin and the front of the muscle and then you just close everything up.

 

Bakewell

But with Jean’s dementia it’s less straight forward.

 

Cardiologist

This is a lady who would not cooperate, who would not lie still and allow us to operate on her, who we would have to bring in to the hospital against her will, who we would have to restrain in some way to allow us to get access to her veins, to then give her a general anaesthetic to undertake the procedure, to wake her up from that anaesthetic, to stop her from picking and pawing at the wound for several weeks, so it was going to be quite an undertaking for her.

 

Bakewell

But what might happen if the battery wasn’t replaced?

 

Cardiologist

Many people who have a pacemaker are not dependent on their pacemaker, it’s something that improves their quality of life and if you let their battery run out they won’t die as a result of that.  This lady was so dependent on her pacemaker and I thought if this lady’s battery runs out she is almost certainly going to die as a consequence of this.

 

Bakewell

So doing nothing will have grave consequences.  If Jean is actually dying the decision would be easier.  But the GP doesn’t think she is.

 

GP

It is very difficult to determine with patients when they might die.  In Jean’s case although she had significant dementia she did not have major other medical other problems and I could not say that I expected her to die in the next year.

 

Bakewell

The fact that Jean can’t decide for herself complicates thing further.  It’s easier for the cardiologist when patients express a choice.

 

Cardiologist

I often encounter patients in their 90s who come up to a box change and they say I don’t want you to do that, I would just rather die.  If they’re of sound mind then we don’t change the battery and I’ve had a number of elderly patients die when I would have happily operated on them but they didn’t want it.

 

Bakewell

Guidance in such situations is rather thin on the ground.

 

Cardiologist

There is standard advice that when the battery runs out you simply change the battery but that doesn’t take into account the patient’s circumstances in any way.  And there’s no formal guidance about what to do in those situations.  I’d also realised this was becoming an increasing problem because dementia is becoming more common and because patients who we put pacemakers in are living longer.  So I thought that I would seek advice from the ethics committee.

 

Bakewell

Given that Jean can’t decide for herself, the team and the ethics committee need to establish what course of action is in her best interests.

 

If a person makes their wishes known, in the form of what’s called an ‘Advanced Decision’ or a ‘living will’, before losing their capacity, that would influence everyone’s decision.  But Jean hadn’t done that.

 

Sarah

My mother didn’t leave any instructions written or otherwise of how to react in a situation like this or anything else, to be honest, I didn’t even know whether she wanted to be buried or cremated – stupidly we never had those conversations.

 

Sarah’s husband

Because it’s quite difficult when you’re healthy and fit to actually write it down what you would like to happen in the long term, I think that’s quite difficult to do that.

 

Bakewell

Jean is not unusual.  The Chair of the ethics committee again:

 

Geriatrician

Sadly we very rarely see a valid advanced decision that applies to the situation that they’re in.  People often tell us oh I have a living will or the husband may produce a living will but in fact it’s a piece of paper that says I want no heroics, which really doesn’t cover the situation that we’re in.

 

Bakewell

So is changing the pacemaker battery in Jean’s best interests?

 

An important consideration is her quality of life.  This makes her daughter doubt the value of going ahead with the op.

 

Sarah

Her quality of life is getting less and less and less, so I wasn’t sure whether I should prolong that.

 

GP

She needed help with all aspects of life, needed carers to assist her to stand and transfer to a wheelchair, she had continence problems and communicated in a very limited way, often just shaking her head or closing her eyes.

 

Sarah

There was not even a glimmer of recognition of me.  We take the grandchildren in, all her family but she never seemed to recognise any of them.  So I just loved to have known what she understood, what was going on in her mind.  The brain seemed to have gone but she was still a person.

 

GP

Despite her limited communication she had personality, was feisty and could on occasions be happy, smiling.

 

Sarah

She was just sitting in a chair, okay sometimes she was happy, sometimes she was not, very bad tempered, aggressive.

 

Bakewell

And visits to the local hospital just make matters worse.  There was the occasion when she had to have her remaining two teeth out.

 

Sarah   

She went to the day centre in the hospital and they had to put her out, obviously, because they were worried about her being aggressive and I said to them as soon as she comes round you need to fetch me and I’d heard her screaming from the waiting room and she was so distressed, she was asking for her mother and her father, she was screaming that I was trying to kill her because obviously she was in a lot of pain, she’d just had these teeth out.

 

Bakewell

Sarah and her husband are reluctant to put her through yet another procedure - the change of her pacemaker battery - but it’s an agonising decision, given that it could ultimately lead to her death.

 

Sarah’s husband

If she could understand what would she have said?  Would she have said no I don’t want my pacemaker done, will you please let me go?  That would have been really helpful to know.

 

Sarah

She would say to me years and years and years ago oh it’s time I popped off, I’m getting long in the tooth now.  I know you joke about things like that but I think there is a little nugget of truth there somewhere.  It’s very difficult, very difficult.  The only thing that kept me going was trying to think what would she have wanted.

 

Bakewell

Right, well I come back to my panel now as the questions get harder. We heard about Jean’s quality of life but, Liz, how do we know what’s going on in the mind of someone with dementia?

 

Sampson

When someone gets to the advanced stages of dementia where Jean is at it’s very hard but I think that you can get clues like her daughter said sometimes she was smiling, we saw a sense of her old personality there, sometimes it’s a case of finding a familiar piece of music that can help someone to enjoy themselves and relax but it’s incredibly difficult and I don’t think anyone can put ourselves in the mind of someone at that advanced stage of dementia.  I just get the sense that it must be very frightening sometimes.

 

Bakewell

Jim.

 

Beattie

The other slightly worrying thing is that I think as clinicians we often make assumptions in terms of our perception of patient’s quality of life and we make decisions sometimes on these value judgements which I think are intrinsically risky.  For example, in heart failure we often think that patients who can’t walk across the room would rather let their life end than maintain that limited life but that’s often not the case.

 

Sampson

There’s some really interesting research with people with the earlier or more moderate stages of dementia which shows that they always tend to rate their quality of life higher than their relatives rate it and I think that gives us perhaps a useful indication that they are still enjoying life and that we, as clinicians or relatives, may be putting our own perception of their situation.

 

Bakewell

Yes it is a danger.  Now we’ve heard all along that everyone surrounding Jean wished they knew what she wanted.  Now Penney, this is one for you, because they’ve talked about advanced decisions, popularly known as living wills, if only she’d left instructions.  Now how often do you come across people with dementia who’ve done that?

 

Lewis

Well it is possible to make a decision called an advanced decision to refuse treatment where you envisage circumstances in the future, after you’ve lost the capacity to make the decision for yourself.  Of course if we think about it in the context of this particular case we can see how difficult that is because possibly Jean might have been able to make an advanced decision to refuse treatment when she was first diagnosed with dementia…

 

Bakewell

That is allowed is it, that would be considered having capacity?

 

Lewis

If she still had capacity…

 

Bakewell

Who decides that?

 

Lewis

The idea would be that you have a discussion with your GP about it, that helps you think about what sorts of treatments you might want to refuse and what treatments you might actually say I’d really quite like this if it’s appropriate for me…

 

Bakewell

Now that seems to me very good to do it at the point of diagnosis with a GP but, Liz, how many GPs would enter into that kind of conversation do you think?

 

Sampson

Well some GPs would but they have very limited time and I think it’s something that all healthcare professionals sometimes find a difficult topic to bring up because you’re projecting into the future and you’re talking about dying.  It’s something that is offered in some memory clinics when people are first diagnosed with dementia.

 

Bakewell

We’ve heard that someone had made an advanced decision saying they don’t want any heroics, now that presumably means that people phrase things far too loosely, so what is the best way to phrase an advanced decision?

 

Lewis

If you go online you can find different forms.  If you’re diagnosed with a particular illness an organisation that specialises in that illness might have their own form.  A more generic form, which I think is quite a useful one, is available from an organisation called Compassion in Dying and they also provide a free telephone helpline that you can call and they’ll help you fill in the form.  And the other thing they do, which I think can be incredibly useful, is to help you create a statement of values and wishes and that can be used not only to help interpret the advanced decision but also to assist with assessing your best interests if there’s a treatment that’s not covered by the advanced decision.  In this case the family would really have benefited from knowing more about what sort of a death Jean wanted, what sort of care she wanted at the end of life, what sort of interventions she might have wanted.

 

Bakewell

That sounds the absolute ideal solution if it wasn’t rather complicated.  Now Liz old people are frail, they might be fading in some way, is the form too complicated?

 

Sampson

I think it is quite a complex process, there are so many different forms around and I think we can get very hung up on having a signed bit of paper.  Actually it’s the discussion that can be really useful and I don’t think we should undervalue the importance of having a discussion with your family, with your friends.

 

Bakewell

Now if Jean had written an advanced decision would it have covered this battery replacement matter?

 

Beattie

Well it could do and in a sense the opportunity is missed because the other trigger point to have that conversation is the time of informed consent for the first pacemaker.  It just doesn’t tend to happen, I have to say, very often for pacemakers.

 

Bakewell

But that’s up to the cardiologist really.

 

Beattie

Well cardiology have not brought into that discussion very much.  We do other devices, for example, implantable defibrillators these days to stop people dying suddenly of some lethal cardiac rhythm disturbances.  Now these are designed to stop people dying and it seems entirely appropriate to me to discuss end of life at the point of that device being implanted because they can also complicate dying – you can have an active defibrillator and be dying of cancer or dying of dementia and no one knows how to handle that then.  So again we need to grasp opportunities at the point of contact when it’s appropriate to have that discussion.

 

Bakewell

It becomes awfully technological too because dying is about something far more philosophical than a lot of machinery isn’t it?

 

Beattie

Well exactly but we’re making dying more complicated by these devices.  And if Jean had had a comment about handling her life downstream from the pacemaker implantation then this would have been a much easier decision.

 

Bakewell

Now we’ve been talking about the advanced decision but let’s now move on about the lasting power of attorney which helps other people make the decisions.  Penney, can you explain that?

 

Lewis

So a lasting power of attorney for healthcare is a document that allows someone while they still have capacity to appoint someone to make healthcare decisions for them when they lose capacity.  So, for example, Jean might have appointed her daughter to make decisions for her.  Those decisions still have to be made in Jean’s best interests.

 

Bakewell

But how does that person know what’s in your best interests?

 

Lewis

When you make a lasting power of attorney you have a conversation with the person you’re appointing about what you might want in the circumstances.  And as you get older, as maybe you get diagnosed with something new you can have another discussion about okay now I’ve got this cardiac problem, what would I want in these circumstances, okay now there’s a dementia diagnosis – you have to have these repeated discussions with the people you care about so that they can inform the best interests assessment.

 

Bakewell

It’s quite a sophisticated idea that isn’t it?

 

Lewis

It’s very challenging, it’s very difficult to predict oneself into the future, some people may find it really quite distressing to imagine their own death but nonetheless we’ll make better decisions if we do talk about them.

 

Bakewell

Now I happen to have made one of these and it is a complicated form and it’s expensive.  So this business of planning ahead, how can we make it easier?  Can I put the burden on the medical profession to begin with Jim?

 

Beattie

Thank you.  I sometimes worry that the medics will determine the decision because they’re to some extent speaking with authority and I think that has to be avoided to some extent.  And it must come down to shared decision making in the true sense, making them aware in a comprehensible way of these complex problems and take their insight into making a consensus in terms of how they want to handle things.

 

Bakewell

It’s a matter of educating the public isn’t it Liz?

 

Sampson

I think it is and there are big ongoing campaigns at the moment to try and increase people’s confidence in discussing what they want when they’re dying – the Dying Matters coalition’s doing a lot of work around this at the moment.  Because we don’t talk about it, it’s still very taboo and yet as we’ve said already it’s the one certainty.

 

Bakewell

Right, well you’re here as the ethics committee so I want a quick answer from each of you as what would you now do in Jean’s case about changing the battery in her pacemaker?  What would you advise Penney?

 

Lewis

Based on the information that we’ve had in terms of her current experience in my view it wouldn’t be in her best interests to have the battery changed, that her quality of life after the procedure is one which she wouldn’t find worthwhile.

 

Bakewell

Liz?

 

Sampson

Given what Jean’s daughter and son-in-law have said about her and about their views, which I think is important to take into account what the family says, I would agree and I think it would not be in Jean’s best interests to put her through such a distressing procedure.

 

Bakewell

Jim?

 

Beattie

Despite being a cardiologist and interventionist I would be inclined to agree that we should be conservative here.  I think that to put her through a procedure would be a major disruption and I think it would interfere with her quality of life and I think that is ethically licit in allowing a natural death.

 

Bakewell

Well thank you all – James Beattie, Liz Sampson and Penney Lewis.

 

And now let’s find out what happened.

 

In the summer of 2012 the clinical ethics committee gave their advice to the cardiologist.

 

Geriatrician

Once we had all the information about the situation that Jean was in, the views of her family, her previously expressed wishes it really seemed clear, I think, to all of us that changing the pacemaker would not be in her best interests.

 

Bakewell

The cardiologist considered the advice.

 

Cardiologist

The final decision was mine and I spoke with Jean’s daughter and I said to her – I’m not going to change her device, I don’t think it’s the right thing to do.

 

Bakewell

Jean’s daughter agreed.

 

Sarah

Taking everything into consideration that seemed to be the best option and the nicest option for her, if there can be a nice option.

 

Bakewell

Jean’s pacemaker battery was expected to run out in early 2013, a few months after the decision was made. But it’s an imprecise science and it continued to work for another year.

 

Sarah

She just continued and it was not until early 2014 that they noticed that her pulse had gone very slow and we did go to the hospital but obviously because of the decision that had been made they didn’t do anything and we took her back.

 

Cardiologist

She was very heavily dependent on the pacemaker and when her battery finally ran out her heart rate did go very slowly, 20 beats per minute, and she passed away very quickly after that happened.

 

Sarah

And I was with her holding her hand so I can’t ask anymore than that.  She was 93.  If it was me I think it wasn’t too bad a death.  So in some ways I think it was the best we could have done for her really.

 

ENDS