Defending the ledge

A tricky one this, but I believe there is point to make – about perception.

 

A recent Guardian article by author Nicci Gerard gave an account that will be familiar to those involved in the care of the elderly. Her father was admitted to hospital with what seemed to be a relatively minor complaint (a leg infection), but left debilitated and hugely dependent on others for the activity of daily living. He had dementia, and his cognitive abilities declined in hospital. His fate is squarely attributed to the care he received. The headline: My father entered hospital articulate and able. He came out a broken man.  The sub-headline: In a plea for better understanding and care for patients, Nicci Gerrard describes how family helped her father cope with dementia – but five weeks in hospital ruined the end of his life.

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His clinical course raises important questions about the nature of frailty (a syndrome in itself, though poorly understood), the quality of hospital care, and compassion. However the presumption that his deterioration was wholly attributable to the care he received generates a defensive reaction in me. What follows is not directed at Nicci Gerard – for all I know her father’s care was genuinely poor. The observations I make are based on personal experience and many family discussions.

 

The link between hospital and deterioration can be a classic error of association. Just because A happens after B does mean that B is caused by A. Often a person will have been going downhill in their own home, only to be admitted when a crisis occurs or when their functional level dips below a certain level . And then… hospital. Hospital, with the attendant risk – not the well known dangers such as falls, infection, thrombosis or exposure to error, but the removal from familiar surroundings and familial compassion.

 

Even with the very best care that the NHS has to offer, a frail elderly patient will be one of several under the care of a single nurse; they will wait for the toilet, they will wake up disorientated in the early morning gloom, they will be frustrated. The detrimental  effect of these non-medical, unquantifiable influences is significant – most would agree – and it is little surprise that recovery can be impaired, or does not occur at all in such an environment.

 

Precisely why patients fall into an accelerated spiral of frailty and complication continues to defy explanation. Reviews have described the physical features of frailty (muscle wasting, poor appetite repeated falls, bone thinning, fatigue)  and proposed theories based on diminished oxygen utilisation. Physical exercise and maintenance of muscle mass has been shown to be protective.  Relatively minor physical challenges lead to dips in functional status, as illustrated in this figure from the linked Clinical Medicine paper by Clegg and Young.

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But frailty and its complications are phenomena driven from within, by the caprice of nature, rather than by the conditions in which patients find themselves after admission to hospital. Explaining this is not easy. Many times have I sat in small relatives room and heard,

“Ever since he’s come in here he’s gone downhill…” or, “…he was fine before, he was looking after himself, but now… he’s bedbound.”  Or “He’s not getting enough physio, just twenty minutes yesterday… he needs an hour to keep him going.”

The challenge is to offer an explanation that describes the nature of frailty pre-admission, but does not appear to shift the ‘blame’. This requires opening a relative’s mind up to the idea that things were not  quite as good before admission as they seemed. Perhaps the patient’s nutritional status was clearly borderline on the day of admission, belying a long period of poor diet. Perhaps patches of redness over the hips and spine are indicative of very early pressure areas – indicating long periods in a chair. Or perhaps the first physiotherapy assessment raised serious concerns about balance and safety, suggesting that they have been on the verge of an accident for a considerable period. All was not well. However, if the possibility is raised that an elderly patient was gradually going downhill, or teetering, one must anticipate guilt.

It is absolutely natural for family members to feel guilty when they are informed that unbeknownst to them, beneath their gaze, their mother or father has been gradually crossing over into the age of frailty. It is natural to react with self-examination: – I’ve been visiting x times per week or month – I’ve ensured the best care, screened the carers, liased with social services, taken round food, not neglected them… – and now they are told that despite these demonstrations of duty, attention and love, their parent is frail. Attention therefore focuses on the place where these manifestations of frailty have become clear – the hospital.

At heart, I suppose, this discussion is about human feelings on both sides – the relatives and the medical staff. If a patient deteriorates in a ward that is served by nurses doing their best to provide support, and doctors who believe they are successfully identifying reversible factors and treating them appropriately, the staff are likely to reject any implication that the downward trend is due to the quality of care. To put it as its most basic, ‘It’s not our fault…’. Or, as I have said to anxious trainees, upset by the inexorable decline of a patient they have been watching closely, ‘It’s the disease, not you.’ And this disease – dementia, with its associated frailty, can run away against all expectation.

 

To be fair, Nicci Gerrard does not ‘blame’ the medical staff;

It wasn’t really the fault of the doctors and the nurses. They healed his infection, they put food and drink beside him, almost all of them treated him with respect and genuine kindness.

But, in an affecting description of what we don’t provide in hospital she writes;

But they left him to himself and couldn’t spend hours making sure he ate and drank. They couldn’t brush his teeth and shave him and comb his hair and read poetry to him, do crosswords, play chess, talk to him, hold his hand, tell him he was safe, keep him anchored to the world he loved.

And finally, a painfully beautiful image of how dementia and frailty combine to steal a once impressive man;

It was as if all the ropes that tied him were cut over those weeks and slowly he drifted from us. We thought that when we got him home we could draw him closer to the shore. But he was too far out. Three weeks ago he slipped from us at last, over the crumbling line that separated him from death.

Reading this, I recognise that there should be no difference of opinion between relatives and medical staff. There is hard work to be done in terms of communication, such that expectations are realistic and perceptions understood on both sides, but there is no escaping the fact that elderly patients with dementia are lost in these huge monuments to healing, and they do lack the minute-by-minute support that they need to keep those ‘ropes’ intact. A great revolution in dementia care is required, but it is too simplistic to attribute each tragedy of lost independence to the wards.

 

0Oo

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2 comments

  1. Hi Phil. I write as someone who’s a long-time admirer of your blog – but with the greatest respect, I think you’ve missed the point a bit here.
    Nicci Gerrard does recognise in her article that her father had dementia and ‘perhaps this is what he would have come to in the end’. Her point is more that if his family had been allowed to spend more time with him – to bring familiarity and continuity into hospital if you will – the decline might have been less precipitous, and his dignity might have remained intact for a while longer. The debate, I think, is more about the contract between hospitals and families, especially the families of dementia patients.
    Although many hospitals are re-thinking this now, many more still operate quite restrictive visiting regimes. And as far as guilt in relatives is concerned, I think more relaxed visiting is a way of dealing with this: even if the patient does deteriorate in hospital, the relatives will perhaps be more able to comfort themselves in the knowledge that they did everything they possibly could to prevent it. They tried to get them to eat. They tried to interest them in the crossword puzzle or what’s happening in the news.
    Other questions revolve around acceptable risk. There is a crying need for honest negotiation with patients and families on this. It may well be the case, as you say, that the person ‘had been on the verge of an accident for a considerable period’, but in hospital, this is too often used as an excuse to keep him tucked up in bed twenty-three hours a day – I accept that this is more often a nursing than a medicial decision, but the inevitable result is permanent loss of mobility. What’s worse?
    Nicci Gerrard’s post moved me to write a blog too – with a focus on its implications for nursing: https://grumblingappendix.wordpress.com/2014/12/05/limits-to-nursing/

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    1. Thanks GA.

      I accept your point here – it is possible that the Guardian article sparked an overly defensive reflex in me, based on previous conversations with relatives where deterioration was blamed on poor care. I agree the whole in-patient model of care needs rethinking for dementia patients, as current restrictions seem almost Victorian at times. I don’t know whether ‘dementia wards’ will help or exacerbate; will a concentration of disorientated peoplevin one place make it easier to provide the right care, or harder? The important factors appear to be enhanced staffing, contact with familiar faces and things and an emphasis on compassion over the hard ‘business’ of a typical medical ward. However, when norovirus or Clostridium difficile hits, it is very difficult to maintain liberal visting. And when a patient requires NG feeding or close observation during a chest infection, the more ‘medical’ model will likely predominate.

      Thanks for the comment, as ever!

      Phil

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