Thanks, NHS, for a rotten way to die

John Hoyland says his stepfather's final days were made much worse by hospitals being unable to acknowledge that he was dying, and unwilling to offer the support the old need
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Indy Lifestyle Online
My stepfather, Jack Sutherland, died in hospital at the age of 80. Born and brought up in the granite tenements of Aberdeen, as a soldier during the war he worked with the team at Bletchley that cracked the Germans' Enigma code. Jack was also a Communist, a self-taught intellectual and a wise, kind and humorous man. I loved him very much.

It took Jack and year and a half to die. Coming to terms with his death, which was a very "bad" one, was not made any easier by the neglect he suffered at the hands of the Trust which runs the NHS in the area where he lived. I would like to think that this neglect was atypical, but I fear it is not.

The problem seems to be, quite simply, that the NHS is not geared up to people dying - and, in particular, to the fact that people have a tendency to die when they are old. The NHS is mainly concerned with patching up whatever seems to be wrong with people and sending them back to their normal lives as quickly as possible. With younger people, this often works. But old people don't recover from illness so easily, if at all. They require a different kind of care.

Specifically, the NHS seems to be concerned with treating symptoms and conditions rather than people. But old people often have a variety of things wrong with them. They, even more than others, need to be treated as a whole, complex organism - in other words, as a person - rather than merely a collection of unrelated pathologies.

Jack, for example, died in the end of a lung infection. But what in fact killed him was a combination of Parkinson's disease, severe arthritis, enlarged prostate and a damaged heart. During the year and a half of his final illness, he was treated by three different sets of specialists for these different ailments and was shunted back and forth between three different hospitals as each in turn was attended to. Communication between these hospitals was minimal. As a result, his notes were frequently lost or delayed or sent to the wrong hospital; he often spent days, even weeks, without being treated at all, while the hospital he was in worked out what to do with him; and, most serious of all, he invariably lost out on the care of the ailments that weren't that particular hospital's speciality.

It was this, my family and I believe, that eventually killed him. Released from hospital A after an operation to insert a catheter into his bladder via his stomach, he was sent to hospital B's orthopaedic ward for a knee replacement operation for his arthritis. He spent a whole week there before it was discovered that the hospital didn't have a hinge for the adjustable splint that was intended to straighten his leg prior to the operation. During this time, the dressing on the wound in his stomach was not changed (the catheter was hospital A's business, not B's) and the wound became infected. He was sent home while hospital A waited for the spare part, and readmitted when it arrived three weeks later. When it was found that he still had the infection, the operation was cancelled. Confined to an isolation ward, he never recovered, and the fatal lung infection eventually followed.

The problem was that while there were lots of people in charge of different parts of Jack's body, no one was in charge of Jack, and therefore no one was able to determine which of his disorders should be prioritised and how the other symptoms should be dealt with.

What Jack needed was a specialist in geriatrics who was familiar with the kinds of ailments that old people suffer from and how they interrelate, and who would make decisions about Jack's treatment on the basis of his needs as a whole.

Time and again Jack would have to wait for hours in hospital corridors for a test or a routine procedure, such as changing his catheter, which took only 10 minutes. Time and again he complained - and I believed him - that no one came when he rang his bell because he was in discomfort or needed something. More than once, he fell out of his hospital bed because the nurses forgot to put bars up to contain him when an infection had made him delirious. He said - and again I believed him - that he was bullied by some of the nurses, especially those (the majority in most of the wards he was on) who were contract nurses. And at least once he suffered severe weight loss because no one had noticed that he was too feeble to feed himself.

At every turn, it seemed, his needs were neglected or ignored, partly because the hospital staff were too busy to attend to them, but also because his needs as an elderly patient simply weren't considered that important.

Normally he bore all this with astonishing patience and fortitude, even humour. But there was a period when the drugs he was given for his Parkinson's affected his mind, making him confused and liable to hallucinations. I visited him one evening in hospital A during this time. That morning he had been taken down for a scan lasting 15 minutes or so, which had not been performed until mid-afternoon. He had spent the rest of the day parked in a corridor in his wheelchair. When I arrived at 6pm, he was still there, after a total of seven hours away from the ward. He had lost all sense of where he was or what was happening to him. His eyes were popping out of his head and his white hair was literally standing on end with terror. I had to wheel him back to the ward myself. "I'm in hell, John," he said. And indeed he was.

Things like this happened all the time. For whatever reason, his catheters - first the one in his penis and then the second one in his stomach - kept getting blocked. On one occasion, early in his illness, the failure of the doctors at yet another hospital to deal with this promptly led to him getting septicaemia and very nearly dying. So when my mother visited him one afternoon (back in hospital B)and found his catheter bag empty, she immediately told the nurses that the catheter was blocked and needed replacing. They shrugged the matter off at first, but eventually, at 4pm, told my mother that a doctor had been called and would come to attend to the problem. This did not happen until 9am the following morning. Jack, a desperately ill and frail old man, needlessly endured 17 hours of agony from urine retention, and his moans of pain throughout the night went unnoticed or unanswered - presumably because old people are notorious for making a fuss about nothing.

Eventually, his chest infection set in and he started to cough up first blood and then tissue from his lungs, continuing to do so for two days until death released him. For the whole of the last day my brother persistently begged the doctors to give him morphine. They refused until just before the end, saying that morphine was only administered to patients "who are in distress".

This kind of unwillingness or inability to deal appropriately with the needs of old people in our hospitals is compounded by what appears to be an almost total inability on the part of the NHS to deal with the fact that patients die.

All of us in the family suspected that Jack was dying from the moment he contracted his first bladder infection to the day he finally did die a year and a half later. But nobody who was treating him acknowledged this or discussed it with us, apart from warning us that he might not survive the worst of his crises. The fiction that, apart from the Parkinson's, his problems were temporary and that he would stride out of hospital to resume a reasonably normal life was maintained to the end. It was a fiction that deprived Jack of the kind of care he really needed.

The recognition that he was dying, or likely to die, would have meant a different kind of treatment, especially towards the end. It would, or should, have meant that caring for him was as much as a priority as curing him. It would have meant focusing on his comfort, easing his pain, answering the bell when he rang it, listening to his complaints and trying to deal with them, attending to his "trivial" needs and, above all, providing a supportive, loving and cheerful environment for him.

Hospices already do this for those whose illnesses have been diagnosed as incontrovertibly terminal. But for old people who do not have a classically fatal condition, but who nevertheless are clearly on their last legs, there is often no such care.

Jack was a passionate supporter of the National Health Service. During his illness, he made endless excuses for the neglect he was experiencing, explaining that the nurses were too rushed off their feet to look after him because of NHS underfunding, and so on. But deep down he knew that the problems were more fundamental than this.

I last saw Jack in hospital, four days before he died. He was heartbreakingly ill by then and could no longer talk properly. But he did manage to say two things clearly in the couple of hours I was with him. One was when I told him I loved him. "You don't know how much that means to me, John," he said.

The other was when I talked about the care he was receiving, and hoped that the nurses were looking after him properly. Suddenly clear as a bell, he delivered his verdict on the long catalogue of indignities, humiliations and avoidable pain that this and the other hospitals had forced him to endure: "When I get out of here I'm going to blow this place up."

Since he died I have felt like doing exactly that myself. But in the end I don't think Jack would have wanted me to follow his late conversion to urban terrorism. He would have been happier with what I have done instead - write this article on his behalf.

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