Nursing homes exporting their demented problems to hospitals

THEY PUT her in a home, the two sisters and their brother. They couldn’t believe that the pejorative phrase would apply to them and to their mother, but it did.

Admittedly, as they were quick to say to each other as a way of soothing the unfair guilt, she saw one of them every day of the week, and sometimes saw more than one of them, because they had been lucky, when dementia struck her, to find a facility that was near each of their homes.

Not that dementia “struck”. It rarely does. It grew like a weed along the structures of her personality, so that for a long time each of them believed that she was just being difficult, or seeking attention, because she had always been difficult, had always sought attention. It was only when she became unremittingly good-humoured and sweet that they realised something was amiss, because she had never been either of those.

So they took her to a sequence of doctors, concealing from her that the final one was a geriatrician, because she was still sufficiently in command of language to know that term as a pejorative.

They put her through the tests: “Now, I am going to call out a series of letters, and every time I say ‘A’ I want you to do a double-tap on the table, OK?” “Can you deduct seven from 83 for me, please?”

Her children rarely had to intervene in the nursing home where she lived-out her late seventies, because it took good care of her. She was delighted whenever she saw her grandchildren and great grandchildren, who were puzzled but pleased that she no longer found fault with them. As time went on, she forgot how to talk and walk, but whenever any of her offspring appeared in her line of sight, she would open her arms and beam at them.

They did notice that her breathing was not good, but she had been a smoker in her youth, so they figured it was inevitable. The doctor who visited the home regularly referred their mother to a consultant, which they thought punctilious but odd, since she was quite happy and without pain and the trip to the consultant’s rooms was disruptive and terrifying. Not as terrifying as what ensued, which was a visit to an acute hospital for X-rays and blood tests.

Nobody could explain to her what was going on, and she could not explain to anybody why she didn’t want it going on. All she could do was squeal and fight and tear at things and people, which she did. In public.

Her son happened to arrive at the nursing home when they brought her back, in an ambulance, from the X-rays. She was dishevelled, fighting them, one shoe off, specks of blood everywhere. Knowing how “decency” and “self-respect” and “keeping yourself to yourself” had been her mantras, he was mortified for her.

The nursing-home management explained that it was policy, the moment any resident evinced any symptoms of underlying disease, to ensure that they saw a specialist. It was now clear — they told him with a disconcerting expectation that he would be pleased to hear it — that his mother had severe heart disease.

“She’s 84,” he observed.

Yes, yes, they agreed, but the consultant would do by-pass surgery and it would lengthen her life. Her son looked at their earnest faces, which were awash in goodwill, and gently asked why they would WANT to lengthen her life. They looked at him as if he was seeking to make them complicit in matricide. Just as they looked at his sisters when they, too, questioned the need for action regarding their mother.

The elderly woman was duly taken to an acute hospital, where major heart surgery was performed on her and she was able to return to the nursing home. That was after several weeks of complications that included blood clots, and pain she couldn’t explain. She constantly fought to escape tapes, restraints, tubes and drains she couldn’t understand. Her son heard her described as “a difficult patient” and, for the first time in a pacific life, came close to striking someone.

He came even closer to striking someone when he discovered her half-naked and soiled with faeces in her barricaded bed. The person to whom he reported this told him reprovingly that an acute hospital was not the proper place for an elderly patient suffering from dementia.

She lived — if you could call it living — for nine months after she returned to the home. Perhaps €250,000 was spent on gratuitously striving to keep an old woman miserably alive. Her three children, to this day, regret that they did not seek to injunct the consultant to prevent him doing what he did.

That was 15 years before the tragic case of Gerry Feeney, and the repetition of the point that elderly patients with dementia should not be in acute hospitals. Why do nursing homes send them there? Many nursing-home professionals say that a catalyst for such admissions is wrong-headed agitation by the relatives of the patient, to the effect that ‘our mother/father must get every treatment they should get.’

I wonder. I seriously wonder. Relatives who demand that the patient get every medical intervention are surely more likely to do so when the patient has cancer, or some other terminal illness, but not necessarily when the patient is very old or demented, or living for months or years in a nursing home. Undoubtedly, many people fear that they are abandoning their relative to death if they don’t demand one intervention after another (or fear that they will be regarded as such). That’s an issue that needs addressing, but of more immediate importance is the habit — there’s no other word for it — within nursing homes of exporting demented residents whenever they develop a fever, a major infection, or difficulty breathing.

This ensures that pointless, needless, grossly expensive surgery is performed on people who gain nothing from it other than continuance of a half-life. Why is comfort not the priority? In the case of breathing difficulty, tranquillisers remove the fear and panic and can ease someone into possibly inevitable death. Most patients exported from nursing homes to acute hospitals would have more peaceful and dignified care in a familiar nursing home.

None of which excuses the appalling mistreatment of Mr Feeney, whose family says his treatment at Beaumont Hospital was undignified.

Nothing excuses it. Nothing could. Nothing excuses the underlying culture in acute care that kindness belongs elsewhere.

That underlying culture is not all-pervasive, but there is, nonetheless, a sense that if you want your patient to experience stillness, quietness, comfort, and the presence of a medical professional who does little other than hold a hand and listen to whispered miseries, then you should go to a hospice.

In every aspect of the health service, patients should be treated as human beings whose dignity matters, and Gerry Feeney was not vouchsafed that.