When deaths ought not to be expected: the interdependency of couples & the inadequacies of health services

theta brain wave scan - remote

This is an account of how, through multiple failures, misses, barren communications, and thoughtless expedience, one family’s parents seem to have died sooner than they should.

The NHS was already struggling due to huge changes instituted by a government that I clearly remember promising us it would not make. The NHS, they said, has been through enough change and needs to settle. I don’t like to think what they really meant by change if this is consolidation. Then, and blame cannot be attributed to these immediate changes but perhaps to the impact of the constant tide of them, came the scandals of Winterbourne, Mid Staffordshire, and now Morecambe Bay. The neglect and abuse of our most vulnerable – elderly people, babies, and people with intellectual disability – not only perpetrated but covered up, denied, and normalised by cultures seemingly inured to the impact. The further scandal of a cover up by CQC adds another layer of appalling behaviour to the composting detritus of the abuses themselves.

But failures and cover-ups are so rarely the fault of the individual who, often in what looks like vengeance, is nailed for it. Failures of this kind are usually cultural and systemic and we all have to ask how it is that people who apparently chose – with the odd exception[1] [2]– to spend their working lives making things better for others, come to the point of such social detachment that they feel no responsibility or empathy any more. Somehow they have been able to shrug their shoulders and go off shift, leaving someone in pain, wet, soiled, thirsty, confused because it was ‘not their problem’.

I have worked for the NHS for forty-odd years so I know it from the inside. By far the majority of that experience was positive, although I have met bullies and toxic management structures that sometimes precluded clinical or even humane reason. This story, about a couple we shall call Hilda and John, is largely about well-meaning people who failed to hear, to communicate, to understand, or to ask. Their daughter, a health specialist we will call Louisa, considered making a complaint but found there were too many disparate health organisations involved, too much bureaucracy and side-stepping mechanisms in the process, and too little available documentation. In contrast to her working and social life where much communication was conducted electronically, thereby giving her reliable evidence by which to guide future encounters, this process relied on phone calls so that firm and, crucially, shared information, was rare[3]. Anyway, a complaint would only set the blame machinery in motion, resulting either in systemic self-satisfaction that it had ‘done nothing wrong’ or the pinning out of some poor blighter who had been a lowly cog in the basement of it all. In addition, the hospital at the heart of it had been taken over by another Trust, which can often mean a convenient disconnect from all previous activities, even when involving the same people. Louisa doubted there would be anything to be gained by engaging with that process, and felt that the matter might be better served by publishing an account, one sided as it was, for thoughtful consideration. The fully identified text, however, would be passed to the hospital and clinicians involved.

So this is Louisa’s story: an illustration of what can happen to people who do not feel powerful or knowledgeable enough to challenge or question professional views, and how knowledgeable representation (from Louisa) was serially ignored or not passed on. Despite its single view point bias, we should be clear that this is not a blame game.

Louisa’s mother died in June 2012, a week short of her 88th birthday. She had dementia and lived in a care home where her care was superb. Her father died in September 2011 of prostate cancer. He had lived in the same care home, having retreated there when he found his illness too difficult to manage on his own. Two very different conditions with two very different presentations in people who had once worked as a team but now no longer could. Critically, Hilda was the driver of everything – except the car – while maintaining the illusion that John was in charge. Thus he was free to get on with being the happy joker, to fetch things from the shop at her behest, and make things such as wooden cabinets, shelf units, and storage boxes. How her dementia might have caused his death requires a bit of historical back-tracking.

In 1931, when Hilda was seven years old, her mother died of a brain tumour and seven years later, her father re-married. Her recollection of this is sparse but she told Louisa how she was unable to get her stepmother’s attention until one day she fainted. Her stepmother enjoyed illness and fussed over it, and this was the beginning for Hilda of a life-long unconscious understanding of her world, that being ill or dependent was valuable. Aside from that, she was a feisty, inquiring, intelligent person who, in another era, could have been anything she wanted to be, but ended up trapped by the war and social attitudes into total domesticity. Here, dependency worked very well because that was what John expected of her too, notwithstanding he loved her beyond belief. Consequently, he would do anything for her and get her anything she needed, within their limited budget.

Hilda had always had an incipient eating disorder: fussy about food, constantly smoothing her dress over her hips, with a self-reported allergy to dairy products that almost certainly was nothing more than a sensitivity. Her doctors believed it. They also believed in her angina which, having observed an episode, Louisa was sure was a panic attack. Being both an intensive care nurse and a psychologist, this was not difficult to diagnose.

And so Hilda went into her later life with angina on her rap sheet but not psychological dependency, eating disorder or socially induced panic attacks. Her history of faints – usually in public places from which she had to be rescued by John – were first attributed to cardiac events and then to TIAs[4]. The ones Louisa saw were the result of hyperventilation.

With her mother’s permission, Louisa wrote to her GP about all of these issues more than once. She warned him about Hilda’s fear of aging, her concerns about her appearance, and Louisa’s own worries about her dad’s retirement giving him far more opportunity to feed Hilda’s dependency. Despite this, when Hilda lost an enormous amount of weight, it took an ex-nurse friend to get her admitted to hospital. When Louisa was told – she and her sister lived at the other end of the country – she advised again about the eating disorder, requested a referral to psychology, and spoke to the hospital, but an appropriate re-feeding regime was not put in place. The nurse on duty told Louisa that Hilda was ‘fine’ as evidenced by her ‘eating all the chocolate biscuits’ John was bringing in. Hilda was rehydrated and discharged within 48 hours and with no referral to psychology. She collapsed the next day, most likely because of her ingestion of massive amounts of carbohydrates and sugars, and was readmitted.

During the readmission, Hilda fell and sustained a subdural haemorrhage so that she had to remain in hospital for several weeks. When she returned home, with physiotherapy exercises to address her impaired balance, she was unable to comply. She knew what to do but could not initiate the action. John was infuriated and became depressed because he could not do what he had always done – look after Hilda and make her better. He up-scaled his trips to the shops, the pharmacy, the supermarket. Anything to find something that would help.

Eventually, Hilda was diagnosed with dementia but, despite many requests, no assessment evidence was offered and even the GP had not been sent the results of the brain scan upon which it was apparently based. She continued to deteriorate. There was a referral for couple counselling from which they were quickly discharged as functioning normally. The counsellor had taken nothing on board from Louisa about Hilda’s psychological history or her acquiescence in John’s presence, and saw her passive agreement with everything she and John said as valid.

A month, maybe more, after her discharge from hospital, John told Louisa about some new tablets he had been given for Hilda and asked what they were. She had been prescribed anti-epileptics and, when Louisa pursued this with the GP, it seemed to be based not on any incidence of seizures during her hospital stay, but on a remark John had made to the para medics. He said he thought he saw her mouth twitch after he had called her name and Louisa’s guess is that he hoped she was trying to answer. This flimsy evidence resulted in the bizarrely late medication amendment. The GP agreed it was not appropriate and so none was given.

As time passed and Hilda’s condition did not improve, John’s worsened so that he required anti-depressants and Louisa was concerned about violence towards her mother, suicide, and even murder and suicide. This may seem melodramatic if you have not come across people having such dire thoughts about themselves and their partners, but Louisa had. She also knew that John had a stock of analgesic medication that was no longer prescribed due to its adverse effects, and that he was keeping them ‘just in case’. Hilda’s condition was incomprehensible and intolerable to John who was pinning all his future plans on her recovery – why did she not help herself, show signs of improvement, DO something? – and he was helpless. Louisa requested the report from the brain scan and, in turn, the GP requested it from the consultant because he had not been sent a copy. It was a two-liner describing lesions that were consistent with dementia but nothing else. Not a word. No discussion of any sub-type of dementia, no indication of extent, and no recommendations.

Louisa requested the scans and took them to a very kind consultant colleague who, with another consultant and a consultant neuroradiologist, told her exactly where the lesions were and what they meant. Their opinion was provisional, they had not seen Hilda and had no clinical picture. One of them did not know whose scans they were and treated the exercise as an academic one so was unguardedly honest with his views. Everyone agreed that this was a sub cortical dementia – Binswanger’s[5] – usually associated with vascular disease, although the label itself was disputed. Louisa asked if this could be the result of prolonged severe dietary restriction such as an eating disorder that had led to severe dehydration, hypovolaemia, and hypotension[6], and again all three agreed.

So now Louisa had a more precise diagnosis, a reason for her mother’s inability to get herself going – her frontal lobes were essentially disconnected from her motivational systems – and a probable cause. An avoidable condition – sub cortical dementia – arising from another avoidable condition – a critical eating disorder – and causing a further avoidable condition – her father’s depression. She tried to get this to the GP and the several consultants and asked to speak to all of them. Only the GP responded although Louisa did later have a conversation with a man who was not Hilda’s consultant but had taken over from him, and was not in post the next time Louisa tried to pull together some coordination. The one multi-disciplinary meeting she had been able to set up with the GP was cancelled at short notice and never reinstated as events overtook them all.

Throughout this, Louisa was doing a full time job as a consultant and so opportunities for meetings or phone calls were limited. The GP did his best but he had little support from the now three hospitals involved, and it seemed no one would take Louisa’s evidence forward as it was informal. Louisa’s impression was that, after years of being on the inside, she was now perceived as being on the outside and so an unreliable source of even professional information. John quickly became more rigid in his behaviours, Hilda less able to do anything other than shout about wanting to be dead or to cry or throw up. During this time, only the GP contacted Louisa, sporadically, despite the letter her parents had written to him for copying on to all relevant services saying that they wanted Louisa involved in any medical discussions and to see all reports and records on their behalf.

By the time Hilda was admitted to the care home, John had been diagnosed with prostate cancer and it was well underway. Without her active support, he had not sought medical advice and so left it too late. He had some admissions, once for severe depression and apparent suicidal thoughts. Then, after an admission for prostate treatment, following which he was discharged home late at night in a taxi with no money, no house keys, and no social service carers due for two days, he moved into the same care home as Hilda.

They lived there for a year or so with excellent care, good record keeping, and absolute attention to them as individuals. John hated being there but tolerated it and was grateful at the end. Hilda no longer cared. In his last days, the home turned itself into a hospice for John and did everything possible. Louisa and her sister could not have wished for better. When he died, they held his funeral at the care home so that Hilda could take as much part in it as she wished and have somewhere to retreat to if necessary. She thought it was a party. Hilda’s intellect knew what had happened but her feelings were disconnected from that knowing. They came out later in bursts of anger and screaming so that eventually she was moved to the EMI wing. Here, she spoke little of John but deteriorated further and went through periods when she refused to eat or drink. Twice, there was evidence of gastric bleeding (‘coffee grounds’ vomiting) and each time, she was admitted to hospital for investigations.

The occasion of the second admission was the first time Louisa recalled anyone from any hospital contacting her. The care home had sent a staff member with Hilda who handed over all their observations to the receiving hospital staff. The next day, Louisa phoned and spoke to a nurse on the ward, asking about investigations of the bleed, but he told her that there was nothing in the notes about a bleed. The care home was adamant and, as Louisa had experience of their record keeping and communication, she felt inclined to believe their account. She phoned again and spoke to another nurse who, this time, said that evidence of a gastric bleed was in the notes but she could not tell Louisa when the entry had been made or by whom and seemed confused when Louisa mentioned NHS policy regarding the signing and dating of all entries into patient notes – surely that information was available, at least to the person reading them? The nurse confirmed that they still used paper records and Louisa could hear her rustling papers while she spoke. Finally, she handed Louisa over to a doctor who must have been nearby and who told her that, as Hilda’s haemoglobin was normal, there would be no investigations. She gave Louisa the reading and it was certainly nothing to be concerned about, so Louisa agreed that invasive investigations would not be appropriate at this stage. Rehydration would be the way forward, and then discharge back to the care home where they were better able to support her eating and drinking.

A day or so later, Louisa was given a new haemoglobin result which was said to be improved but was actually lower than the previous one. She remarked on this but no satisfactory answer was forthcoming beyond ‘I’ll get someone to ring you.’ No one did but as everyone, it seemed, was fully expecting Hilda to return to the residential service by the end of the week, once a new mattress to accommodate her frail frame had been delivered to them, Louisa did not pursue it.

By the Friday of that week, it seemed that Hilda’s discharge had been delayed as the mattress was not yet at the home. Everyone concerned understood this to be the case, no one having any inkling that there might be other issues. Then on the Saturday evening Louisa picked up a message on her answerphone suggesting she ring the hospital. It was not urgent, the message said, and so as it was late Louisa phoned the next day and spoke to someone who said he had just seen Hilda and she was fine, but he did not have her records with him so Louisa should phone on Monday to speak to Hilda’s consultant.

When she did, she was surprised – but only a little – to be having a discussion about putting a DNR[7] notice on her mother’s notes. Surprised because Hilda had, apparently, deteriorated over the weekend and needed IV fluids while Louisa had continued to believe she was about to be discharged. But only a little surprised because Hilda was very frail and resuscitation is not a gentle business. Anyway, this was, it seemed, just a precaution. Louisa said she needed to discuss it with her sister. They talked it over and gave their consent the same day. During the course of this discussion, Louisa and her sister decided to bring their planned visit forwards and go up as soon as possible, if they could get accommodation. They were not advised to do so and, beyond the precautionary DNR, there was nothing in any conversation that gave a sense of urgency. Nevertheless, they were on the road two days later and picked up a voicemail message from the hospital on arrival at their hotel. Hilda had died while they were in transit; they had missed her by two hours.

In the days that followed, it became clearer that Hilda had stopped eating and drinking before she died. In Louisa’s words, she had ‘turned her face to the wall’ in stubborn resistance, probably because her unarticulated grief had finally taken precedence over passivity and acquiescence. Hilda had given up.

Understandable as this might have been, and the likelihood of Hilda’s death coming so soon after the application of the DNR being coincidental, the hospital’s record of honesty in its communication gave rise to suspicions – at least regarding whether or not Hilda had actually been offered food or fluids once the notes had been amended. The charge nurse was not able to clarify the situation, there was no mention of the Liverpool Care Pathway[8], and no one could, or would, tell Louisa when Hilda had been seen last or by whom. Significantly, the charge nurse said nothing about who was there at the end, and so Louisa was left with the inescapable conclusion that Hilda died alone.

So there it is – communication failures among many different health professionals, attitudes that seemed to preclude family involvement, and exclusion of the GP from much of the procedure. Critically, there was no acknowledgment of the importance of psychological support – in fact there was no psychology, the GP said – no appreciation that eating disorder could occur in an elderly woman, no connection between the hospitals, consultants, and services, and no acknowledgment of the expertise – both professional and personal – that Hilda and John’s family could bring to the care process. These were silo services, no doubt with good hearted people at their core, which practised systematic neglect by ignorance and incidental devaluation of people unable to take their custom elsewhere. This then, is how Hilda’s psychological response to her world eventually led not just to her own death but to John’s too, and the tragedy is that it was entirely preventable.

The question that arises from this account, which is unlikely to be unique, is how to resolve issues of this kind. Louisa’s situation is dreadful but it is nowhere near as dreadful as those of the many other people whose experiences have come to light via the Winterbourne, Mid Staffordshire, and Morecambe Bay reports. And now the CQC has been found covering up its errors and castigating its own staff. As a result, everyone has rounded on everyone else and we have a triad of toxicity in operation as politicians demand investigations of services, the media demands investigations of services and politicians, and the public demands – with some justification – higher and higher standards from all of them.

But what is blame going to achieve? If we hound everyone out of their posts by public shaming and vitriolic persecution, who will be left with the courage to take the helm? How will people learn from mistakes? Maybe only Hare’s white collar psychopaths will feel able to step up. Of course wrong-doers should be prevented from causing harm. So should the inept and the casually negligent. But how many of those people actually work in health and social care? Who goes into those businesses for an easy life? Not many, I would say; most are just trying to do their best. I would ask instead how many are going home to sob into their pillows at night, paralysed by the pressures coming at them from all angles, the requirement to sell yet another huge change to staff teams already weighed down by the effects of previous changes and cut to the bone by budgetary restrictions, and the fear that something unknown is brewing and will somehow be their fault.

The solution seems to me to be in nurturing, openness, and horizontal communication in the context of strong leadership-by-example, and a culture of exploration when mistakes happen. There are protocols for this: checklists, supervisory structures, and performance monitoring. But none of these matter where honesty is persecuted, gagging clauses[9] exist, and people’s futures are bound up in the organisation that is failing. People need to feel proud of what they do and the organisation for which they work, and that comes not just from reward systems but from genuine valuing and collaborative effort. Care is everybody’s business, whatever their badge says, and care includes courtesy, respect, humour, affection, decency of attitude, and constant on-the-road learning from every part of the process.

Since writing this, I have come across a most remarkable book that has huge beneficial implications not just for the NHS and other care services, but for how we as a society might better conduct ourselves. Called ‘Intelligent Kindness’[10] [11], it details the impact of kind and personalised behaviour on the wellbeing of both the giver and the receiver of that behaviour. Patients feel understood and they recover more quickly, staff feel connected and valuable in someone’s care. A culture of kindness – alongside expertise and competence – requires organisational modelling and the exorcising of blame, and it should be neither impossible nor expensive.

Since writing this piece, the government has recommended replacement of the Liverpool Care Pathway with an unspecified alternative. This is due to widespread public criticism (see The Independent) of its application and no doubt, had Hilda been one of its end-of-life recipients, her death may have been a part of the picture. But is this because, in the places where care is poor, morale is low, and no one has time to be kind even to each other, the LCP is likely to have been used as an expedient and not a route to peaceful and dignified dying? This piece by Cara Bailey in The Conversation opens up the discussion.

[1] Robert Hare has published compelling descriptions of ‘white collar’ psychopaths who travel under the radar, often rise to high office, and leave trails of destruction behind them.  ‘Without Conscience’ by Robert Hare, 1999.

[2] I recall a trainee psychiatrist, after behaving appallingly on placement, saying he wanted to specialise in older age psychiatry because ‘they don’t answer back’.

[3] How strange that, once people become ‘outsiders’ in health and social service care (and this goes for many other public sector organisations too), people in their most vulnerable and anxious state of mind are reliant upon scribbled notes and a memory that can be made to seem inadequate in the face of computerised logging systems and on-screen records. This should change, and quickly.

[4] Transient Ischaemic Attacks.

[5] Unlike Alzheimer’s, sub cortical dementia is due to destruction of the white matter that insulates neurons and found in the middle of the brain, away from the cortex. http://www.ninds.nih.gov/disorders/binswangers/binswangers.htm

[6] This would constitute a functional mimic of vascular disease in that blood flow would be impaired.

[7] Do Not Resuscitate

[8] The Liverpool Care Pathway is an ‘end of life’ protocol that enables withdrawal of food and fluids in people who have arrived at a point where their bodies are unable to make use of sustenance. It should always be implemented after full consultation, if not always agreement, with the family. http://en.wikipedia.org/wiki/Liverpool_Care_Pathway_for_the_Dying_Patient

[9] Gagging clauses have been applied mostly, but not always, to senior staff following internal complaints. Often the recipient is a whistle-blower, despite there being provision for this in NHS guidelines. http://www.independent.co.uk/life-style/health-and-families/health-news/nhs-hospitals-spend-2m-on-gagging-orders-preventing-staff-speaking-out-8654716.html http://www.nhsemployers.org/employmentpolicyandpractice/ukemploymentpractice/raisingconcerns/pages/whistleblowing.aspx

[11] See also Tony Berendt’s piece on kindness and the Francis report. https://www.fmlm.ac.uk/blog/anthony-berendt/kindness-and-francis-report-socratic-dialogue

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