In the Midst of Life

by Jennifer Worth

  In my days of nursing, patients seldom reached this state, because they died first from one of many possible causes: heart or kidney failure, bronchitis, pneumonia, septicaemia caused by bedsores, starvation because they could not swallow, choking because food or fluid entered the lungs and they could not cough. Pneumonia was the usual release. We called it ‘the old man’s friend’. Life-saving treatments were fewer than are available to us today, but also, and perhaps more importantly, medical people had far more autonomy. We were not hemmed in by bureaucracy and endless rules and guidelines. A doctor and the ward sisters could agree that treatment should not be given to a specific patient under specific circumstances, and this decision would not be questioned. Today, fear of litigation inhibits all decision-making.

  In his outstanding book How We Die, Sherwin B Nuland tells the moving story of his friend Philip Whiting’s descent over six years into the extremes of Alzheimer’s.

  … Phil became totally incontinent but was quite unaware of it. Although fully conscious, he simply had no idea of what had happened. Urine soaking his clothes and smeared sometimes with his faeces, he would have to be undressed to clean off the filth that profaned the pittance of humanness still left to him …

  And through it all, he never stopped walking. He walked obsessively, constantly, every moment the ward personnel let him … Even when he was so weak that he could barely stand, somehow he found the strength to walk back and forth, back and forth, around the confines of the ward … Once seated, the frail body bent sideways because Phil didn’t have the strength to hold himself up any longer. The nurses had to tie him in lest he topple to the floor. And even then, his feet never stopped moving …

  During his final month of life, Phil had to be tied into bed at night to prevent him from getting up to resume his incessant walking. On the evening of January 29, 1990, in the sixth year of his illness, puffing breathlessly from the effort of one of his fast, forced marches, he stumbled into his chair and fell to the ground, pulseless. When the paramedics arrived a few minutes later, they tried CPR [cardio-pulmonary resuscitation] to no avail and sped him to the hospital, which was right next door. The emergency room doctor pronounced him dead of ventricular fibrillation leading to cardiac arrest … *

  The Methodist Homes for the Aged is an excellent, non-profit-making charity, and takes a high percentage of patients with Alzheimer’s who require twenty-four-hour care. The carers work cheerfully, motivated by a sense of vocation and duty. The Methodists have a specific policy for care of the dying, set out in their booklet The Final Lap. The teaching is based on acceptance of death as a fact of life, and the need to prepare for its coming, and I was discussing this with a chaplain for one of the Methodist Homes. All of their chaplains are closely involved with, but not responsible for, medical practice. Citing Nuland’s description of his friend’s condition and death, I posed the question, ‘Would you really allow such an aggressive resuscitation attempt upon anyone in that condition?’

  I expected him to say, ‘No, we accept death and respect the dead.’ But he didn’t. He left it open by saying, ‘The trouble is, it is increasingly hard to define death – the boundaries are so blurred, and we do not have in each individual Home a member of staff who is qualified to pronounce death.’

  He sat pondering for a minute, and then continued.

  ‘Apart from that, no Home wants to have too many deaths. You see, it is our policy to integrate the Home into the community, so that residents are not isolated. If too many coffins are seen leaving the premises, this could start fear and suspicion and gossip among people living in the area. You never know what might be said. This would be bad for the Home, and all the residents would suffer.’

  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.. .’*

  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.**

  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 int
erest 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.

  Everyone I have tried to speak to on this matter shuts me up, or changes the subject. But body language is more eloquent than words. A sudden gasp of breath, a widening of the eyes, or tightening of the mouth, suggest that I have dared to broach a subject best avoided.

  Betting has never been my obsession, but I would bet that my hunch is correct!

  WHO CARES?

  Half a century ago, there was no distinction between nurses and carers, because student nurses did all the work that carers now do. A young girl’s nursing training started with three months’ classroom induction. Then followed a full year of basic, hands-on, bedside nursing care – in other words, all the mucky work. Two more years of ward work had to be completed before State Registration. We were constantly under the strict supervision of the staff nurses, ward sisters and, ultimately, Matron – all of whom had been through the same training. It was a real apprenticeship.

  But nursing was firmly stuck in the past, based on the old Nightingale tradition – docile acceptance of rigid discipline under a hierarchical system that was sacrosanct. Reform was necessary.

  The Salmon Report (1966) appeared first, proposing new management principles for nursing. Some of these changes were undoubtedly needed, but I remember the shock that swept through the profession, and later the whole of society, when it was announced that the post of matron would be axed, leaving no one with overall responsibility for nursing standards.

  1972 brought the Briggs Report. It proposed that nurses’ courses in further education colleges should be established. However, nurses were still working long hours on the wards, and if they left, someone would have to replace them. This problem was not, and has never yet been, adequately addressed.

  The Griffiths Report came next (1983), under the chairmanship of Sir Roy Griffiths, the Chief Executive of Sainsbury’s, with a committee that did not include medical or nursing representation. The report recommended that management based on business models should be introduced to save the government money. According to Griffiths, there should be no difficulty in transposing the principles of commerce to the NHS. Once you let economists and accountants get their hands on things, you quickly lose sight of the original objective!

  Project 2000, 1986, was the work of a new statutory body, the UK Central Council for Nurses (known as the UKCC) who, with the Royal College of Nursing, debated the training of nurses. Higher education was becoming absolutely essential. One small example will suffice to illustrate this: in my years of training we had a few hundred drugs, of which about forty or fifty were in common use. Now, medicine has hundreds of thousands of drugs in its armoury, of which about one thousand are in daily use. They all have to be known – their dosage, action, reaction, cross-reactions, allergic reactions. If I were working on the wards today, with my level of knowledge, I would be a danger to the public! A good education is essential, to degree standard.

  Project 2000 aimed to bring students under the aegis of academia, thus removing their isolation from mainstream student life, and enhancing the image of nursing as an academic discipline. This, in my opinion, is a wonderful aim. Project 2000 is lengthy and wide-ranging, mostly relevant only to the professions, but the following are three of the main features of reform that are pertinent to the care of the sick and ageing:

  To separate education from service by conferring supernumerary status on students and creating bursaries in place of training salaries.

  To create a single register that would do away with the Enrolled Nurse grade, and to simplify the designation of first-year student nurses.

  To establish a new clinical grade of support staff, essentially to replace junior nurses and enrolled nurses, whose function would be fulfilled by these aides.

  ‘To separate education from service’. Herein lies the rub. Nurses need higher education, but they also need practical training in bedside nursing. A thousand and one tiny details, some so small they are barely perceptible, are involved in basic nursing care, and these details have to be learned; they are not obvious to the casual observer or to someone who thinks they could just do the job.

  The second reform dealt with the proposal to do away with the State Enrolled Nurse (SEN) qualification. Nursing staff had always had assistant nurses or auxiliaries to help them. The Voluntary Aid Detachments (VADs) in the military hospitals of the First World War are just one example. Later in the century, the SEN received a training approved by the Royal College of Nursing (RCN) that was essentially the same as the first year of student nursing. The course appealed mainly to married women who had family commitments, who enjoyed nursing but did not want responsibility. I worked with several and, as a ward sister, knew that an SEN was a great asset, providing stability and continuity on a ward. Also, she was often a mother figure to nervous you
ng students, doctors as well as nurses. But Project 2000 looked ahead to a single register of graduate nurses, in which a second grade of enrolled nurses had no part.

  When I read the words ‘To establish a new clinical grade of support staff,’ I was unclear what this might mean, but assumed it could easily be found out. Two months later, after an exhaustive study of professional papers and government reports, after rushing around all over the country interviewing people, I am still unclear, and get the impression that everyone else is, too!

  Let’s start with the name or title for these support workers. My researches produced about twenty different names. When I told this to a spokesman for the RCN, he laughed: ‘Over the history of the RCN we have come up with 295 different names for support staff, and there may be more.’

  From the inception of Project 2000, statutory powers enabled the UKCC to phase out the apprenticeship approach in favour of more academic training. Nurses started to leave the wards, and that was when carers came in. It was the first time the word ‘carer’ had been used as a job description. Hitherto, they would have been called auxiliaries, assistants, or one of the 295 options. By the 1990s, the title Health Care Assistant (HCA) became accepted, and this seems likely to stick.

  In my capacity as an ordinary person, or ‘Everyman’, seeking to get to grips with this revolution in healthcare provision, I studied a great many documents, Government Reports, professional reviews, websites and journals distributed for public information by the Care Quality Commission (CQC, formerly known as the Healthcare Review Body). Whilst the area is muddy and changing all the time, the following is taken from my researches and is accurate at the time of writing: