Drugging the elderly: A widow’s fight for justice
A grieving widow believes anti-psychotic drugs given to her husband with Alzheimer’s disease in an Auckland rest home brought about his death in December. Tony Wall reports for the series Drugging the Elderly.
When Phil Wood was taken off antipsychotic drugs in September because staff at Edenvale Home and Hospital believed he was in the final stages of life, he suddenly perked up.
It prompted his wife, Jill Armstrong-Wood, to write a poem she called They Said:
Possibly only weeks they said
The end is near they said
Might as well take him off all the drugs they said
He has other ideas
Life has returned
Eyes wide
Recognition
Smiles
I’m back!
HE said
But it was only a brief reprieve.
By late November, Wood was put back on risperidone, an anti-psychotic drug commonly used in rest homes to control behavioural symptoms of dementia, but which can increase the risk of death in such people.
In the US, risperidone is not approved by the Food and Drug Administration for use in dementia patients, but is often prescribed off-label.
Here and in Australia, it is the only antipsychotic registered for behavioural and psychological symptoms of dementia.
Wood died in the Mt Eden home on December 6. His death certificate lists the cause of death as ‘‘deconditioning’’ against a background of Alzheimer’s disease.
Deconditioning is a decline in muscle strength and bulk, often seen in the elderly due to bed rest and inactivity. It is usually reversible.
Armstrong-Wood says her husband of 20 years was in good spirits before being put back on the medication, supposedly because he was lashing out at staff. He then suffered seizures and died a few days later.
While she accepts he was in the end stages of his life, she firmly believes he would have been able to enjoy Christmas and his birthday on December 30 – and perhaps live longer – had he not been ‘‘overmedicated’’.
She says she will lay a complaint with the Health and Disability Commissioner.
She is speaking out for the Sunday Star-Times series, Drugging the Elderly, which has found that increasing numbers of elderly New Zealanders are taking anti-psychotic medication. Concerned people have come forward to share stories about loved ones with dementia being given the drugs without their consent, allegedly to keep them docile and easier to manage.
Disability Rights Commissioner Paula Tesoriero says she’s concerned by the findings of our series, especially in light of a United Nations recommendation in 2014 that immediate steps be taken to eliminate the use of seclusion and restraints in medical facilities.
‘‘We need to take a serious look at the ethical and legal frameworks operating around this issue now,’’ Tesoriero says.
‘‘Better investment in support services will help ensure that dignity and autonomy is at the heart of everything they do.
‘‘It will help ensure chemical restraints do not become a default option. Limited resources should never be an acceptable reason to use chemical restraints.’’
The Ombudsman has been given $29 million to
‘‘We need to take a serious look at the ethical and legal frameworks operating around this issue now.’’ Disability Rights Commissioner Paula Tesoriero
fund monitoring and inspections of the country’s 230 privately-run aged care facilities over four years and is currently formulating inspections criteria.
Chief Ombudsman Peter Boshier is aware of increasing reports of dementia patients being given drugs to sedate them and is monitoring the work of a Royal Commission of Inquiry into aged care in Australia, whose interim report raised concerns about the use of chemical restraints. He expects inspections to start next year.
‘‘Be assured that I will be looking into the use of... chemical restraints,’’ he says.
‘‘Any concerns I have as a result of these inspections will be raised in a report, which may be presented to Parliament.’’
The work helps fulfil New Zealand’s obligations under a UN convention to prevent torture and other cruel, inhuman or degrading treatment and punishment.
Catherine Hall, chief executive of Alzheimer’s NZ, says responsibility doesn’t just sit with rest home operators – but doctors who prescribe the drugs, DHBs and the Ministry of Health, which can check that anti-psychotics aren’t being over-used as part of existing auditing mechanisms.
Emails Armstrong-Wood sent to clinical leaders and management at Edenvale, which is run by a non-profit trust affiliated to the Open Brethren Church, show her growing frustration with his care and medication.
Wood, a retired electrician, was only 70 when he died and had been living with Alzheimer’s for about 10 years. He’d moved into the home at the beginning of 2019.
Armstrong-Wood says she got the Health and Disability Commissioner involved at one point because staff were putting her husband to bed at 3pm – against his wishes – and keeping him there for up to 19 hours a day.
She says he came close to death in September while ‘‘over-medicated’’ on risperidone, at which point the medication was withdrawn and he improved. But in late November he was put back on risperidone because of his ‘‘aggressive’’ behaviour, which staff claimed included hitting, spitting and resisting carers.
Armstrong-Wood, who had power of attorney for her husband’s personal care and welfare, says she wasn’t consulted and would not have consented to him being medicated.
She says Wood had been immobile and confined to a chair for several months and was not a risk to anyone. He would only become agitated when certain carers tried to handle him – others had no problems.
‘‘The most he can do is flail an arm about,’’ Armstrong-Wood wrote in an email to the clinical leader.
‘‘This does not constitute him being drugged out of his mind for the whole day to the point of having seizures.’’
She pleaded with the nurses not to give him the drug, which he was receiving twice a day.
‘‘He was so zonked out he couldn’t even eat,’’ she said in her email to the nurse. ‘‘And his eyes were half shut and his mouth wide open. He was not able to engage with me – completely overdosed.’’
Armstrong-Wood says the nurses agreed to review the medication but on November 30 and December 1 her husband suffered two seizures.
She was furious – saying in an email: ‘‘I predicted that something like this would happen’’.
Some caregivers agreed with her that it was not necessary to medicate him, she wrote.
‘‘It may be convenient to have him in an almost comatose state. But there are other residents there who show difficult behaviour – they are not knocked out with drugs,’’ she wrote.
She also expressed concern over whether the home’s GP had seen Wood prior to him going back on the medication and instructed staff not to medicate her husband without discussing it with her.
‘‘Hopefully, Phil will pull through this and be here to enjoy Christmas.’’
In an email to Armstrong-Wood after her husband suffered the seizures, the clinical team leader explained that he had been on risperidone for several months earlier in the year as it was ‘‘the only medication that settled him’’.
But he deteriorated and the clinical team decided to stop the risperidone, she said. Later in the year he became more restless and aggressive, so staff gave him the sedative lorazepam when needed.
But the clinical leader said that drug was no longer working and he was ‘‘back to his old self’’ hitting and spitting. He had only been on risperidone for two days before his seizures.
The nurse claimed that two registered nurses discussed with Armstrong-Wood putting her husband back on the anti-psychotic – Armstrong
Wood denies that, saying she wasn’t consulted at all.
She was insulted by the ‘‘back to his old self’’ comment.
‘‘Phil’s old self is the most kind, gentle and loving man who would never hurt a fly,’’ she emailed. She added that his brain had been ravaged by Alzheimer’s ‘‘and a change in personality is one of those very unfortunate things that can happen’’.
She told the team leader she had spoken to many staff who said they had no problem managing Wood and no-one had mentioned hitting and spitting before.
‘‘I was told he was going on the medication and that it was charted by the doctor – end of story,’’ she wrote. ‘‘Your communication is dismal. And you are constantly trying to cover your butt. You need to work on teaching your staff to manage difficult people instead of drugging them.’’
Edenvale’s general manager, Marlene Hickmott, said in a statement that the home ‘‘takes great pride in the quality of care we provide to our residents, so it is very troubling for us when a resident or family has concerns about that care.
‘‘In caring for patients with dementia, whose needs are often very complex, we work with expert clinicians and medical teams in consultation with family to ensure they are receiving the most appropriate care.’’
Hickmott says she can’t comment on the circumstances of Wood’s death for privacy reasons ‘‘but also as there is a proper process for families to formally raise their concerns, that involves raising concerns first with providers, then the District Health Board and the Health and Disability Commissioner’’.
Armstrong-Wood says some of the caregivers had been ‘‘absolutely lovely’’ but there had been a lack of compassion from management.
She never wanted to put her husband in an aged care facility, she says, but she wasn’t coping with him at home.
When he first went into Edenvale he was aggressive and lashing out, and after an assessment by a psychogeriatrician she agreed to the use of risperidone.
He was transferred from the dementia unit to the home’s hospital. When he became immobile and lost muscle mass, she felt there was no need to continue using drugs – certainly not at the same dose.
She has found confrontation with the rest home distressing, but she is determined to push for accountability.
‘‘I am a fighter – I’m a very good advocate for Phil and always was.
‘‘I’m just so bothered by this whole end of life care that Phil got that I just can’t find any peace – I can’t get on with my grieving.’’