Old people with dementia are being unlawfully dumped and legally forgotten about in locked rest homes, or abused at home by their children. Now doctors, lawyers and welfare advocates are demanding better safeguards for them and others similarly vulnerable. Donna Chisholm reports.
Her son Terry, 65, and his wife Erica, 66, told police they looked after her the way she wanted to be treated, but the Crown says their “care” in 2014 left Beatrice, now 93, “at death’s door”.
In the New Plymouth District Court in October, the couple was jailed for two years and nine months. “They lived in a pigsty and treated her like a dog…worse than a dog,” the officer in charge of the case, Detective Mike Thorne, told North & South. “They were just using her as a gravy train.” Neither was working at the time and they were living off Beatrice Heppell’s superannuation.
“She was an elderly, defenceless woman and she trusted them to look after her and live with dignity until it was her time to go.” All they had to do was ask for help if they couldn’t cope, Thorne says. “I want to bring it to the public’s notice: this is going on and if it’s happening, look out, you are going to jail.”
A month later, South Auckland woman Cindy Taylor was also jailed, for 12 years, after being found guilty of the manslaughter of her 76-year-old mother Ena Dung, and of using her bank card dishonestly. Dung’s body was found covered in flies, maggots, urine and faeces. A pathologist found she had died from dehydration and malnutrition. She weighed just 29kg.
When the government’s SuperSeniors website launched in 2015, Seniors Minister Maggie Barry fronted a video championing an Enduring Power of Attorney as a key protection for a future in which we may be unable to make our own decisions. The problem in the Taranaki case, as in so many others, says Age Concern, is that powers of attorney are usually held by the very people – often adult children – who are abusing them. Erica Heppell held the signing authority for her mother-in-law’s bank accounts, but there wasn’t an EPOA.
Nationally, Age Concern gets 2000 referrals a year, most commonly alleging psychological and financial abuse. However, 20 per cent of cases involve carer neglect, and 19 per cent allege physical abuse. Only 10 per cent have Enduring Powers of Attorney.
Read more: How Enduring Power of Attorney can go wrong
Elderly people may be being looked after at home when they should be in residential care, or put in rest homes when they don’t need to be, and rising property prices are exacerbating the problem of poor care at home, says Wendy Bremner, chief executive of the organisation’s Counties Manukau branch. “If you have adult children or grandchildren who don’t own their own property, and they’re thinking, this is the nest egg, this is what they’re inheriting, they don’t want to see that diminished because the cost of living in residential care is coming out of the asset.”
Adult children are often no longer able to afford to rent properties, and are moving back into the family home. Bremner has heard of cases where the parent is then confined to a small back room in their own house, and an adult child’s family takes over.
“They have to get permission to even use the kitchen in their own home. They have to sit in the bedroom all day, every day, and they’re able to come out only when they’re allowed to.”
Women aged over 70 – most of them Europeans – make up more than two-thirds of the organisation’s referrals nationally. Nearly half are older than 80.
Janet Anderson-Bidois, the Human Rights Commission’s chief legal adviser, who in a previous role spent 14 years at district health boards dealing with similar situations, says the worst cases often involve relatives with powers of attorney “ripping off the families or in dispute with siblings”.
“The real problem is we don’t have an equivalent of CYFS for older people.” If we don’t need one now, we certainly will very soon, she says. “There might not be hundreds of cases, but there are significant numbers and we have an ageing population living longer.”
Anderson-Bidois says the right paperwork is one thing, but an elderly person may still be living in horrific conditions, either in the care of neglectful relatives, or in a facility. “My concern is the absence of safeguards in the system.”
She says while people might baulk at a CYFS-like approach, it may be the only way protection can extend out of state or private facilities and into the community. Groups such as Age Concern, where complaints of abuse are often directed, have no ability to act without co-operation. “They can’t go and ask for medical notes or interview people; they rely on some sort of engagement from the person concerned.”
In June, a Human Rights Commission report recommended that locked aged care homes, dementia units and residences for disabled people should come under the same sort of independent monitoring regime as jails, youth justice facilities and locked psychiatric units. At present, says Anderson-Bidois, the main protection for patients is through the Health and Disability Commission (HDC), but it doesn’t act without a complaint. “These patients don’t complain and often, people might not even know they’re there or have considered the legal basis on which they were admitted.”
Even though the number of abuse and neglect cases is small, lawyers, doctors and welfare advocates are becoming increasingly concerned at the lack of legal protections for those who don’t have the capacity to make their own decisions – commonly the aged, but also younger people with learning disabilities, mental illness or brain injury.
The law that’s meant to safeguard their interests is the nearly 30-year-old Protection of Personal and Property Rights Act, but a lengthy research project by Dunedin barrister and Law Foundation research fellow Alison Douglass, released in July, found it is outdated. The range of people to whom the law applies, and today’s social environment, are very different from when it was passed, at the peak of the era in which big psychiatric hospitals were being closed.
Her report makes a series of recommendations (see Time for Change on page 66), but there’s unlikely to be a quick government response. Ministry of Justice spokesperson Ruth Fairhall told North & South that while its officials have met Douglass to discuss her report, other reforms – of family violence law, the Trusts Act and privacy law – are taking priority. While a review of the PPPR Act “may be beneficial”, it would need justice, health and disability sector input and involve a thorough examination of all aspects, not solely mental capacity.
Douglass says where there is inconsistent practice, and potential idiosyncrasies, in how people interpret and apply an out-of-date law, “there are real risks people will fall between the cracks”.
That’s happening in hospitals every day, doctors say. A common scenario is a person in their 80s, who’s been living at home but struggling with increasing confusion. They fall and break a hip and are admitted to hospital. By the time they’re physically well again, they can no longer live safely on their own, because of their dementia.
There are several ways such cases can be handled. The first is that the elderly person already has an Enduring Power of Attorney – usually a child, relative or close family friend – that needs only to be activated following a medical assessment. The second, and more usual situation, is that the patient has no EPOA. They may agree to transfer to a rest home or locked dementia unit, despite there being no legal authority for the move.
And then there’s the patient who says, “Over my dead body.” “They’re waving their walking stick around and saying, ‘You’re not coming near me,’” says Anderson-Bidois. What then?
Hospitals, who don’t want their beds “blocked” for lengthy periods with patients who no longer need to be there, are dealing with the issue in varying ways, depending on their interpretation of the law. Some are using a clause in the HDC’s code of consumer rights allowing health providers to treat people who aren’t competent to make an informed choice if it’s in their best interests, and “reasonable steps have been taken to ascertain the views of the consumer”.
But lawyers and doctors we spoke to worry that the clause is being abused, and that people lacking capacity are being unlawfully shunted into long-term rest home care – or detained in locked units – when the code should never be used for that purpose.
Here’s where the PPPR Act comes into play, allowing families or DHBs to obtain, through the Family Court, personal orders governing the person’s medical treatment for three years, and property orders, for their financial affairs. If someone is willing and able, the court can appoint them as a welfare guardian, but there are no guidelines as to what that role entails and a shortage of guardians, especially when there is no family member to step up, or the family is in conflict.
The court process is cumbersome, time-consuming and costly. Experts say it’s also at odds with international human rights conventions on the rights of people with disabilities, because it focuses on decisions being made by others, rather than supporting the autonomy of the person with the disability.
Wellington barrister Iris Reuvecamp, who’s specialised in health law since 2001 and frequently acts as a “lawyer for the subject person” under the PPPR Act, says there are few checks and balances on whether the decisions are in the best interests of the patients, and the extent to which any wishes expressed when they were competent are taken into account.
But it’s not just about detention in residential care. “It’s about people who are unable to remove themselves from situations and that can be at home as well, where there is no one advocating for them. I’ve come across cases where someone has moderate to advanced dementia and the family wants to keep them at home – and even when they’re doing their best to look after the person, they don’t have the skills. In one case, they basically tied the person to a chair so they could go out and do what they needed to do.”
The court can be asked to review an EPOA, or to make orders to place someone elsewhere. “The question is, who does that and how accessible is that process? At the moment, it depends what part of the country you’re in and the process could take weeks, if not months.”
Auckland District Court judge Philip Recordon, a former district inspector of mental health from the mid-1980s until 2003, sees the need for widespread reforms. He says we’ve relied for decades on the “Kiwi spirit and basic decency” to provide appropriate care.
“New Zealand society has changed – quickly. The will and spirit remain, but family and individual pressures – especially economic – are dramatically different, with poverty, housing shortages and overcrowding. Where do the elderly fit in? The law protects them, in theory. But where are the resources, and the monitoring? From an international human rights point of view, we fail miserably. We really do.”
He says even lawyers struggle to understand the PPPR legislation, and families and social workers “have no idea”.
Counties Manukau DHB psychogeriatrician Mark Fisher says things probably go smoothly for 99 per cent of people who go into care, despite not having the proper orders under the act, “if you ignore the issue that they may not be there legally”.
“It’s all done with the best intentions, but there is pressure to move people quickly out of the wards to make way for the next lot of patients. There’s an urgency to get people into care who are ready to go.”
In a crude audit of five Auckland facilities, including three psychogeriatric units, investigators found disturbing numbers of dementia patients had no legal orders covering their care. “The major concern is in the private hospitals, where about 60 per cent of patients lack capacity and 30 per cent had no satisfactory form of legal authority,” Fisher says. With more than 33,000 people in rest homes, private hospitals, dementia units or psychogeriatric hospitals nationwide, thousands could be affected.
Recordon says the facilities audited were the “Rolls-Royce” of units, so it’s likely others have worse figures.
Although the average age of those going into residential care has increased by about 10 years in the past two decades, Northland DHB physician and geriatrician Alan Davis, director of health of older people, says more innovative home care plans would allow others to continue living in their own homes – the environment they usually want to be in.
“A number of people looking to go into residential care could conceivably go back into the community if there was a lot more flexible home care.”
Usually, home care involves help with morning and evening showers or meals. “A person turns up at 6pm and you have to be in bed by the time they leave half an hour later, which isn’t particularly convenient for a lot of people.”
Much of the renewed interest in better protection for people lacking capacity has followed two high-profile court cases in the United Kingdom. “Deprivation of liberty” safeguards were introduced in 2009 after the “Bournewood gap” court case, taken by the foster carers of a 49-year-old autistic man. The man had become distressed at a daycare centre, and when his foster carers couldn’t be contacted, he was admitted to hospital where he was detained for four months. Ultimately, the European Court of Human Rights found the doctrine of “best interests” under which he’d been held was too arbitrary and lacked safeguards. Then in 2014, the Supreme Court – in a case known as Cheshire West –clarified what was meant by a “deprivation of liberty”. It found this meant people who lacked capacity to consent to their care and treatment, who were under continuous supervision and control and weren’t free to leave.
This means that hundreds, if not thousands, of patients who lack capacity and have been sent to rest homes without a court order might arguably be regarded as illegally detained, regardless of the quality of their care, or the motivations for it. These people may not even be in locked units but perhaps aren’t free to leave because access is controlled by a keypad for which they don’t have the code, for example.
In the UK, says Anderson-Bidois, the Court of Protection and Office of the Public Guardian provide a better framework for protecting the rights of vulnerable people, and New Zealand should consider similar bodies, as well as improving the independent monitoring of places where people are detained against their will. She concedes there won’t be an easy way to address the shortcomings and there are “funding implications”.
Fifteen to 20 years ago, PPPR orders “without notice” were obtained from the court in a matter of hours, she says. The system was tightened, largely in response to domestic violence cases, but this, and the pressure on the courts, now means urgent orders can take weeks or months. DHBs take cases on behalf of patients who have no family and no one else able to act for them.
Anderson-Bidois says even when the correct orders are obtained, people appointed as welfare guardians often have no idea what their responsibilities and obligations are, and their role isn’t registered. Some welfare guardians believe they should “take over” the decision making, when they ought to be supporting the vulnerable person as much as possible in having their own wishes respected. Advance directives, and better education about the role of attorneys and guardians, would help.
“There’s an interesting discussion about what you do about people when that’s the way they’ve lived their life,” she says. “They might have been the sort of person who never went to the doctor, always had alternative treatment, and were quite happy to live alone with their 10 cats. What do you do when they legally lose capacity?”
She says health providers don’t want to risk ending up in a coroner’s court or facing police charges if they know someone is living in a way that’s dangerous to them, and do nothing about it. “But if you’d asked the lady with her 10 cats, she might just be happier to have passed away there and lived the way she always did. There’s a tension between what you think is the right thing to do and in their best interests, and what they themselves want to do.”
Kris Gledhill, a former UK barrister and now associate professor of law at Auckland University of Technology, has appeared in precedent-setting cases in the European Court of Human Rights, the House of Lords, and Court of Appeal. He says the human rights framework recognises that “old-style paternalism” on which “best interests” is based, “is not appropriate in modern society.
“Everyone has the same set of rights, and how you exercise them might mean you’ve got to give more to people with disabilities to ensure their rights are respected. Yes, in 99 out of 100 cases, with people just doing the right thing, you’ll get the same results as if the regulations are followed properly. But liberty, and particularly liberty for vulnerable people, is so important you need to have a bit more of a system in place to catch that one-in-100 example.”
Dementia, which already affects more than 50,000 people in New Zealand, is projected to affect more than 120,000 of us within 25 years, and Douglass says reforms will require a “whole of government” approach, such as that adopted in England and Wales with the revamped Office of the Public Guardian and Court of Protection. The office registers and supervises powers of attorney and investigates reports of abuse of them.
Douglass, who’s spent many years as a court-appointed lawyer for people with diminished capacity, says New Zealand stands out internationally because it has no equivalent public body.
She believes it shouldn’t matter, legally and ethically, that the care of most people in detention is of a high standard – an independent check and balance is required. As eminent jurist Lady Hale noted in the British Cheshire West case: “A gilded cage is still a cage.”
For Napier man Ross Heppell, whose mother was so badly treated by his brother and sister-in-law, the details of what happened to her and why remains a mystery. Because the couple admitted the charge, there was no trial, and no explanation, he says.
He now holds an Enduring Power of Attorney over his mother’s affairs.
His once-regular visits to his widowed mother were curtailed before the ill-treatment began, because of his own surgery for the complications of diabetes. When he rang to speak to her, he’d be told, “She’s just had a cup of tea and gone to bed.” Visitors, too, were informed she was asleep and that they didn’t want to disturb her.
“I’ve since heard that should set alarm bells ringing, because it’s a common fob-off.”
He says the family never discussed legal orders such as powers of attorney. “I just expected the call to say, ‘Mum’s passed away in the night and the funeral will be on Wednesday.’ I never stepped back to think of the consequences of this or that. But now, you get your eyes opened to a whole lot of new roads.”
Ross has tried to get his mother to talk about what happened to her. “She hasn’t said a thing about it. As soon as it’s mentioned, she’s shtum. It’s deep somewhere, really deep.”
End-of-life law surprises a lawyer.
If you think that having an Enduring Power of Attorney is all you need to help you negotiate care for an elderly relative with dementia, Auckland lawyer Cecily Brick’s experience will make you think again.
Brick’s mother held an inactivated EPOA for her husband, who’d been diagnosed with Alzheimer’s disease in February 2016, and his mental capacity had been steadily deteriorating before he was admitted to hospital with a minor heart attack in September.
Shortly before that, respite carers had decided they could no longer take him because of his behaviour, so when he was hospitalised, the family decided now was the time to activate the EPOA and have him assessed for residential care. But hospital doctors refused to do the assessment, saying it wasn’t necessary, and wanted to discharge him home to his wife’s care.
Brick says the doctors gave two messages: the first was that it was inappropriate to assess her father because he’d been acutely unwell, which could prompt a period of delirium; the other was that his behaviour wasn’t a problem, anyway.
It just wasn’t true, says Brick – he’d become increasingly erratic, at times bewildered about where he was or how long he’d been there, and would try to escape the unit. Part of the problem, she suspects, is that different staff saw him on different days, and often he’d be fine in the morning but confused and aggressive by afternoon. It’s called “sundowning” – a well-known, if not well understood, symptom of dementia.
Brick asked her father’s GP to write the report saying it was appropriate for the EPOA to be activated. The registrar told her that even if he did so, the hospital might not accept it – or might need to get a legal opinion. “We were floored,” says Brick. “I was quite irate with them and Mum was very distressed.”
The GP wrote the report, anyway. It took several weeks before the hospital assessment was done, which concluded he required locked dementia care. He was moved into residential care in November, after seven weeks in hospital.
Brick, who specialises in insurance law, says while a crisis such as a hospital admission can prompt the decision for an EPOA to be activated, it may be easier for the family if it’s done before that happens.
“We thought it’d be straightforward for Mum to say the time has come, Dad has to go into residential care, but we just ran into a wall.”
Auckland psychogeriatrician Mark Fisher, one of those pushing for better safeguards for patients who lack capacity and are detained, outlined several recent case studies from Counties Manukau DHB files:
- A 78-year-old woman brought to hospital after falling outside her house. She has delirium caused by infection, but also moderate dementia. There is no Enduring Power of Attorney and her family agree residential care, most likely in a dementia unit, will be necessary on discharge. The family agrees to apply for court orders, but after two weeks, they have not done so, perhaps deterred by the cost: $2000-$5000. The DHB ultimately applies to the court for a personal order and a manager of her property.
- A 74-year-old man is admitted to hospital following a stroke. After four weeks of treatment, he makes only a modest recovery and accepts admission into residential care. He’s assessed as having the ability to make this decision, but three years later, his mental function deteriorates. There is no Enduring Power of Attorney, but his daughter supports a change in his level of care to a private hospital. He is moved into the private hospital attached to the home.
- An 86-year-old woman is admitted to hospital after breaking her hip in a fall. She is dishevelled, malnourished and incontinent, and is diagnosed with moderate dementia. Her husband is the nominated attorney but the power has not been activated. He insists on discharging his wife from hospital, against medical advice. His wife wants to go with him, but is unable to discuss the risks or concerns about neglect. The clinical team feels residential care is more in her best interests and refuses to discharge her to her home.