As he said that, the memory of my neighbour’s experience flashed through my mind. The house is large, with about ten rooms and half an acre of garden, and at the time, a young family was living in it. The wife, Ginnie, was a trained nurse who enjoyed looking after the elderly, so the family decided to open four of the rooms as a residential home. They all lived and ate together, and it was a happy arrangement. The old people enjoyed the company of the children, who in turn had the advantage of seeing and living with old age. The young husband kept chickens and geese and grew vegetables. One of the old men made it his responsibility to feed the chickens and collect the eggs. A couple of ladies helped in the kitchen.
Then misfortune struck. Within a month, two of the old people died. Police investigations followed; then the local press. Repeated interrogations reduced Ginnie to a shadow of her former self. The local paper made it a matter for front-page headlines. The coroner’s verdict was that the deaths were from natural causes, and Ginnie was completely exonerated, but the two remaining residents were taken, against their will, to a registered care home, and quite a crowd gathered outside the house to watch their removal. Ginnie was distraught, because it did not end there.
The things that were said locally about Ginnie were vicious. I know, because I heard them. Matters got so bad that, eventually, the family was forced to move.
I told this story to the chaplain. He said, ‘I am not surprised. It is the sort of local reaction I would have expected.’
‘What do you do, then, if someone looks near to death?’
‘It would depend on the circumstances, but quite probably we would send the person to hospital.’
‘That’s not satisfactory, is it?’
‘No, but we have to be so careful, and it gets harder for us all the time. We even have people with feed-pegs coming into our Homes. So then someone has to make the decision to remove it.. .’[2]
His voice trailed off, and I could sense the heartbreaking difficulties that have to be faced.
A feed-peg - or gastrostomy, or jejunostomy or other parenteral routes - is an alternative to a naso-gastric tube. It is a plastic tube inserted through the abdominal wall into the stomach and fixed in position. The purpose is to enable liquid feeds to be given directly into the stomach. A study of the care of patients in the USA with Alzheimer’s, or advanced dementia due to another cause, found that fifty-five per cent of people who died of the condition, died with a feed-peg or a naso-gastric tube in place.[3]
In January 2010 a report on Oral Feeding Difficulties and Dilemmas was published by the Royal College of Physicians, together with the British Society of Gastroenterology, and endorsed, among others, by the Royal College of Nursing. This presented the results of a three-year study under the chairmanship of Dr Rodney Burnham. It reports that thousands of old people are being forced to have feeding tubes implanted in their stomachs if they need to be admitted to a nursing care home, and that this is a widespread problem, because many care homes say they will not take a patient until they have had a gastrostomy.
The report states that the practice of force-feeding old people through tubes in their stomachs is seldom necessary, is highly invasive and should not be undertaken lightly. Critics have questioned the Royal College of Physicians’ findings and pointed out that only a doctor can decide whether a person should be subjected to a gastrostomy, to which the RCP replies that there is pressure on doctors to authorise it in order to free up hospital beds by discharging patients into residential care.
Why is this practice ‘widespread’? Why do nursing care homes only accept a patient with a gastrostomy? The answer is that it will take a carer fifteen to twenty minutes to spoon-feed a patient adequately, whereas it takes about two minutes to pump a semi-liquid feed into a stomach. Drugs can be administered with the same speed and efficiency. Time is money, and the advantages are obvious.
We, the general public, are responsible for this. We are paranoid about not letting anyone who cannot feed himself die quietly as nature intended. Without knowing it, we push for force-feeding of old people.
Wherever they meet, nurses talk shop. On a walking holiday in Italy I met Sandra, an American nurse from Florida. It was May 2009, and my mind was full of the book I was writing, so I mentioned it. Her face changed from mild interest to focused attention, and her voice became urgent.
‘Oh my God! This book has gotta be written. We do it all the time. Hell, it’s crazy. We dialyse people who are ninety-eight per cent dead. They don’t know anything, can’t move, can’t swallow, can’t talk, totally incontinent, an’ we do renal dialysis, three times a week. Hell, it’s just crazy.’
‘Can you go on?’ I asked.
‘I tell you, we got a guy in our clinic at the moment with creeping paralysis – it’s got a lot of new fancy names, but it’s the same ol’ thing, creepin’ paralysis – starts in the peripheries an’ creeps up through the body, an’ when it gets to the lungs that’s it. Or it used to be. But not any more. This guy’s had it for two years, slowly, slowly losing all sensation an’ control, creeping slowly up, an’ it’s got to his lungs. So what do we do? Eh? We bring in a respirator. At the same time he loses control of swallowing – so we pass a naso-gastric tube. It’s obscene.’ She had to pause before continuing and her voice became slower and sadder. ‘Poor ol’ guy, he was so sweet. It alters y’nursing perspective, y’know. When you’re looking after someone with Alzheimer’s or creepin’ paralysis, you build up a real relationship, with a real person. When it gets to a respirator and artificial feeding, you’re just maintaining a machine, and the person gets to be a chemical reactor. It’s not the same at all.’
The sunshine suddenly seemed less bright, and the Bay of Naples less beautiful.
‘Do you think profit is the motive?’ I asked.
She shrugged. ‘Your guess is as good as mine.’
‘When will it all stop?’ I enquired.
She was fierce in her reply.
‘I’ll tell you. It’ll stop when the money runs out. When relatives have to pay for it out of their own pockets. When they can’t demand that the insurance pays for it. That’s when it will stop.’
‘When the money runs out’! Great poets and writers and thinkers can express the inexpressible, and see way into the future. Samuel Beckett, in his book Malone Dies, published in 1951, wrote, ‘There’s no place in America where a man can die in peace and with some dignity, unless he lives in abject poverty.’
The possibility of extending life for long periods of time opens the door to exploitation, and I have a hunch that it’s possible a good many people might be kept alive for the money they bring in.
Look at it this way. Only a small number of nursing care homes are non-profit charities, and these are mostly faith-inspired. The majority of care homes are profit-making establishments, which can be bought and sold on the open market. Some of them are public limited companies, with a board of directors whose first responsibility is to their shareholders. Care homes can be very profitable, and it is alleged that some directors lead millionaire lifestyles.
Every institution, be it something like a school or a sports club or whatever, relies on numbers to keep going. If the numbers drop, the institution becomes economically unviable. Private clinics, rest homes and nursing care homes, all of which rely on cash flow, are no different. They have to maintain a certain number of paying patients to keep going. A death represents loss of revenue. The more expensive the place, the more urgent the need to keep the beds filled.
2
It is very difficult to remove a feed-peg because it is a life-maintaining device. It requires a major medical/legal decision and this is not easy to come by.
3
Ahronheim, J C, Morrison, R S, Baskin, S A, Morris, J, Meier, D E. Treatment of the dying in the acute care hospital. Advanced dementia and metastatic cancer.