‘It’s easier to dope up a patient like he doesn’t exist’
Something was happening to Lourda Finn’s father. A few months after being admitted into a nursing home with dementia, Gerard seemed to be growing increasingly unstable on his feet.
Whenever she had visited in the early days, she and other family members would walk the wards with him or spend time in the garden at the rear of the building. But now he seemed to be tripping or falling over and losing the ability to do any of these things.
“One day I visited in early March, the colour had drained from his face. He wasn’t eating,” she says. “I remember we arrived and he was sitting in a Buxton [restraining] chair. He was there – but he wasn’t there. It was like looking at the shell of a person.”
Shortly afterwards, he was rushed from Cappahard Lodge, a Health Service Executive-run service for older people, where he was being cared for, to Ennis General Hospital. Clinical records show he was comatose and over-sedated.
Much later, Lourda saw medical records which indicated he had been administered an anti-psychotic drug used to treat major mental illnesses. The drug’s sedative-type side-effects mean it is often used to control the behaviour of patients with challenging behaviour; it isn’t, however, licensed for this use.
He was also administered a benzodiazepine – lorazepam, also known as Ativan – on the basis that he was becoming increasingly agitated.
Guidelines in many major hospitals say these drugs should be used sparingly and only as a measure of last resort. In the case of lorazepam, for example, no more than 2mg should be given in any 24-hour period.
Prescription forms for Gerard Finn shortly before he was admitted into hospital allowed for up to 12 times that amount to be administered within a 24-hour period.
“Too often the response to challenging behaviour is, ‘let’s sedate the patient’, instead of trying to solve the problem,” Ms Finn said. “It’s easier to dope up patients; then they can sit there like they don’t exist.”
A review into his care later, commissioned by the HSE on foot of complaints by Ms Finn, raised serious concerns over drug prescribing in his case.
“It is the view of the review team that this form of lorazepam prescription was unacceptable,” the review team found. “The dose given was too large, the frequency too great and there was no limit put on a daily dose.”
The review urged new guidance for staff at the nursing home on writing prescriptions to include the indication, frequency and maximum doses.
The HSE – which has since apologised over aspects of his care – says robust recommendations have been put in placed regarding medication use and other matters.
Gerard was admitted to hospital on two more occasions; on one of those emergency department records again noted sedation as an issue. He died a few months later, but Ms Finn was left with a host of unanswered questions.
“We have a right to know how our loved ones are being treated. But I felt we were just ignored and pushed aside.”
Powerful drugs
Thousands of nursing home patients are in receipt of powerful drugs to suppress the kind of anxiety or aggression that can go hand-in-hand with Alzheimer’s disease and other forms of dementia.
But many of these psychotropic drugs are not licensed for use on older people because they can double the risk of death and treble the risk of stroke.
Medical guidelines state these forms of medication should be used only as a measure of last resort and where disruptive behaviour poses a risk of harm. That’s because agitation and distress among patients can often be an expression of unmet need, such as boredom, pain, frustration and lack of stimulation.
Studies indicate that person-centred care, therapeutic approaches and other non-drug-based therapies are more effective in tackling challenging behaviour. But these options tend to cost more and rely on trained experts. Against a backdrop of spending cuts and limited access to therapy, there is growing evidence to show powerful drugs are increasingly being used on a routine basis for institutionalised patients.
Interviews with health professionals and family members show that antipsychotic medication, which is supposed to be given as matter of last resort, is often dispensed sloppily, without regular review, by staff with little expertise in the area.
Anything up to two-thirds of these prescriptions are inappropriate and linked to needless deaths, studies indicate.
But faced with agitated patients, worried families and stressed staff, doctors often feel compelled to offer some hope .
In the process, many clinicians admit to finding themselves in a tangled web of clinical evidence and ethical concerns over how best to manage behavioural problems among vulnerable people.
“The fact is you have patients in poor environments,” says one consultant psychiatrist , who declined to be named. “The patient gets stressed and reacts to it. Therapies are fine in theory, but try accessing them in the community. So, the response is to get the psychiatrist involved.”
The side-effects of powerful medication, say campaigners, can be very harmful and rob individuals of their quality of life. They include sedation, dizziness, unsteadiness. This, in turn, can lead to increases in falls, injuries and withdrawal. Latest research links these drugs with a ninefold risk of stroke in the first four weeks of use, and almost a doubling in the risk of death.
Based on these findings, and equivalent research in the UK, the drugs may be contributing to up to 170 deaths a year in Ireland.
The Department of Health says there are care standards which require all residential services for older people to report the use of psychotropic medication on a quarterly basis as a method of monitoring restraint. In addition, the HSE is developing guidance on the appropriate management of medication for people with dementia.
But concerns remain.
"They are being used too widely in long-stay settings – that's what the evidence is showing," says Prof Brian Lawlor, professor of old-age psychiatry at Trinity College Dublin and consultant psychiatrist at St James's Hospital. "Very often there are underlying issues, like stress, pain, a change of environment or a side-effect of other medication."
Pharmacy records for some nursing homes seen by The Irish Times, along with new studies, indicate that anything up to one-in-three residents in some nursing homes are in receipt of this kind of medication.
A recent national audit of dementia care in Ireland found that half of patients admitted from nursing homes into hospitals were on antipsychotic medication. Prof Lawlor says there is a role for these drugs, but only in cases where a patient poses a serious risk and where underlying factors have been ruled out.
“Even in these cases, the drugs should be continued at a low dose and for the shortest time.” he said. “Often times, disturbed behaviour is episodic and doesn’t persist, or in some cases issues can be resolved through person-centred care.”
‘The first drug would zonk him
’ In his day, Alice’s father was a strapping farmer and sportsman. “He won medals for hurling when he was younger,” his daughter
says.
In his late 70s, he was diagnosed with Alzheimer’s and moved into his daughter’s home. where he stayed for almost four years.
Over time, he became incontinent. He could become aggressive if left unchanged for long periods. He was also highly sensitive to medication like sleeping tablets , which left him with troubling side-effects.
Despite the condition, he was able to walk unaided and liked to help with jobs around the house – he swept the floor, helped with the dishes and helped make his bed.
When the nights became unmanageable, doctors advised he be admitted into a HSE-run nursing home which specialises in treating older people with dementia.
The changes she saw within four to six weeks, she says, were startling.
“He’d lost weight and had gone from being upright and steady on his feet to being hunched over and very unsteady. He had also become very agitated and extremely pale.”
Clinical records show he was initially administered Seroquel, an antipsychotic drug not authorised for use among over-65s or individuals with Alzheimer’s. Records also show he was administered benzodiazepines, antiepileptic medication (though he didn’t have epilepsy), antidepressants and sleeping tablets on a regular basis.
“That first dose [at about 7am] would zonk him out until about midday. They told me it was because he could be difficult at breakfast . . . But breakfast wasn’t until nine.”
After being admitted to hospital with sepsis and dehydration, he was placed in a psychiatric unit for assessment for seven weeks. His medication was reduced dramatically. The change, Alice says, was remarkable.
“He came to life. It was like another person,” she says. “The staff there saw the importance of managing him around his personal care and other needs. When managed properly, there was no need for him to be over-medicated.”
Yet, when discharged back into the nursing home, his dosage was increased yet again. He ended up falling about 20 times, she says, suffering a fractured hip and concussion.
“It is wholly unethical to persist in medicating a person who is showing clear signs of an adverse reaction to a drug,” she says. “In Dad’s case, they just continued to medicate, irrespective of what we said”.
A different way
In the UK, the response to mounting evidence over the inappropriate prescription of antipsychotic drugs has been to draw up targets to reduce the practice. The moves have been startlingly effective. Use of the medication reduced by more than half between 2008 and 2011.
In Ireland, however, campaigners feel thousands of people with dementia are still having their lives put at risk by these drugs.
In theory, nursing homes which use “chemical restraint” to sedate people for convenience or disciplinary purposes are required to notify the State’s health watchdog, the Health Information and Quality Authority (Hiqa). In practice, say health professionals, this often doesn’t happen.
While the authority has the power to inspect homes and look for evidence that appropriate arrangements are in place for treating challenging behaviour, critics say it is often a box-ticking exercise which doesn’t examine the quality of therapy available.
One key obstacle, say some experts, is a financial disincentive to providing therapy rather than drugs. Nursing homes receive a “one-size-fits-all” payment per resident under the Fair Deal scheme.
This funding expressly excludes the kind of therapies which research shows can play a key role in enhancing residents’ quality of life.
Medication costs, however, are recouped under the General Medical Services (GMS) scheme.
Dr Suzanne Cahill, national director of the Dementia Services Information and Development Centre, says the approach to tackling dementia in Ireland – like in other countries – has been dominated by the medical model.
Funding goes towards medical care and drugs. A new way of funding care is needed if the private sector is to be incentivised to provide the kind of specialist therapies needed to tackle challenging behaviour more effectively, she says.
“Payments need to be appropriate with the level of care, staff training, skill mix,” Dr Cahill says. “Often, it’s not expensive . . . but it requires training staff.
“Things like reminiscence therapy, music therapy, pet therapy, aromatherapy, cognitive stimulation programmes. There are a whole range of interventions like this which can be effective. Like everything, it’s down to training and motivation of staff.”
While, in theory, residents have an entitlement to therapeutic services provided through public services, in practice they are difficult to access.
Tadhg Daly, head of Nursing Homes Ireland, the main representative group for the sector, says many nursing homes are moving from a medical model of care towards a social one with less emphasis on drugs.
“Many of our members are doing great work and introducing different models of care that enhance the quality of life of residents with dementia,” he says.
Moorehall Lodge in Drogheda is one of those homes. It has abolished signs of institutionalisation, such as drug trolleys, name tags and staff uniforms. It has reproductions of old Drogheda shop fronts and local photographic memories. They are a small part of its “butterfly programme”, which aims to make emotional connections for people on a daily basis.
These kinds of dementia-specific units are considered the “gold standard” in caring for people with challenging behaviour. But there are only a handful in the country.
In the meantime, the population with dementia is set to double in the next 20 years and treble in the next 35.
This will place increased pressure on acute hospitals and social care sectors, which even now are struggling to cope. The pressure to develop safe, quality services for patients in line with these changing demographics is only going to grow. Most experts agree the issues have yet to be tackled properly – but they are not going to go away.
