Caught between archaic, paternalistic laws and deteriorating conditions in care homes, more and more BC seniors and their families are discovering how easy it is for the elderly to lose basic civil rights that we often take for granted. (Originally published in Focus, January 2009.)
We’re here to bust an 86-year-old woman out of a nursing home.
Kim packs Joan’s personal items (some names have been changed to protect anonymity). I survey the quaint room and ask, “Do you like it here?”
Joan replies, “I want to go home.”
Instantly, I see why Joan is in trouble. I’ll soon learn she’s smart and funny, but she looks feeble and vulnerable. Dammit, she looks old. You feel an instinct to reach an arm around and reassure her, “I’ll take care of everything.” You want to take charge.
For Joan, that’s become the problem.
We walk toward the exit. But how hard can it be for a daughter to get her own mom get out of a residential home?
“I thought I could never be shocked again,” Kim says later, while her mother meets with a lawyer. As a health care consultant, Kim thought she’d already seen the worst of health care. “But I’m continually reeling.”
Archaic Laws, Few Rights
I was also shocked when I first learned how easily seniors can lose their rights.
My friend Jamie had long been friends with Dan, a poor recluse. In 2006, Dan contracted an infection. Jamie got him to hospital. While the 72-year old was recovering, a psychiatrist appeared asking personal questions, wondering if the isolated senior was “capable” enough, or if he needed residential care.
Dan preferred home, and revealed he had savings from which he’d pay Jamie for help in future.
The psychiatrist became suspicious. “He started asking me all these prying questions,” says Jamie.
The relationship between the psychiatrist and still-recovering recluse deteriorated, as it became clear Dan’s fate was at stake. “Dan was crying a lot,” says Jamie. “And then Dan decided he hated [the psychiatrist] and he would not talk to him. This made it all worse.”
The psychiatrist suddenly declared Dan mentally “incapable” of making decisions. Dan was forced into residential care; the Public Guardian and Trustee (PGT) took charge of his money.
A similar thing happened to Tony Argieri–and he’s only 49 years old.
Argieri has a neuromuscular disease; he’s wheelchair-bound, deaf, and recently lost speech. But with the aid of specialized computer communication tools, he’s lived alone and worked as a government accountant for years.
In some unclear sequence participants disagree on, Argieri apparently was hospitalized for a thigh operation last year, a hospital doctor declared him mentally incapable even though Argieri could only answer his questions in slow, awkward handwriting, he was sent to Glengarry nursing home, VIHA stored his belongings, the PGT took control of his money, and his landlord stopped receiving rent and sued.
Eventually, clumsily clutching a pencil and pushing one computer key at a time, Argieri contacted Paul Gilbert, an old friend. Gilbert says Argieri seems like “pretty much the same guy” he’s always known. He’s been trying to unravel what happened and help Argieri regain control of his life, but has been stonewalled.
Authorities are reluctant to communicate with Gilbert, protecting patient confidentiality. Argieri signed a letter designating Gilbert as his representative, but Glengarry staff countered Argieri wasn’t mentally capable of making that decision. Gilbert asked for documents establishing Argieri was incapable, but no one has produced any.
“I was murdered,” Argieri types to me.
“It doesn’t seem entirely fair,” comments Gilbert.
Legal experts agree. The root problem is provincial legislation covering guardianship of people with diminished mental capacity. (These laws include the BC Patients Property Act, Representation Agreement Act, Adult Guardianship Act and the Health Care (Consent) and Care Facility (Admission) Act. See also this overview.) Canadian Centre for Elder Law (CCEL) lawyers analyzed guardianship laws in 2006. These experts say BC laws, unlike elsewhere in Canada, have “remained virtually unchanged” since 14th century Kings were dictating to lunatics and idiots. BC laws are “paternalistic”, they state, “breach procedural fairness standards”, and “threaten Charter rights and freedoms”.
In summary, the laws affecting Joan, Dan and Tony are “a disgrace” to democracy, says Laura Watts, CCEL national director. “You flip a switch and you have no rights.”
The “switch”? If you’re deemed “incapable” by a health professional, control of your life is handed to a court appointee, usually a family member or the PGT. But what’s “incapability”, and how is it determined? If you regularly forget pots on the stove, but still manage everything else, are you “incapable”? Yes or no?
There’s widespread “confusion” even among lawyers and health professionals, CCEL writes, because incapability is “vague” and “appears to differ in different contexts”. Health professionals often use a Mini-Mental State Examination (MMSE), CCEL notes, “erroneously” presuming that its 10-15 cognitive challenges to count backwards by seven, spell backwards, and say noifsandsorbuts can effectively determine your right to liberty. Many health professionals, CCEL states, even simply dole out “informal”, “on the spot” judgments and then testify authoritatively, “in my opinion, this person is incapable.” CCEL adds that due process rights are often ignored by health professionals who “perceive ‘doing law’ as contrary to ‘doing health’.” Typically, you’re not even notified you’re losing your rights, in order to “avoid unnecessarily upsetting” poor, incapable you.
Protests Easily Ignored
Essentially, these laws leave most seniors in care homes powerless. Many residents have already been deemed incapable, and others can easily be so deemed at any moment.
The abject powerlessness of most residents and contrasting immense power of care providers has long been a feature of nursing homes, but few relatives or guardians worried or intervened much so long as homes appeared to be reasonably respectable places to put loved ones.
However, in recent years, the quality of care and life in BC residential homes has been deteriorating. Relatives are becoming alarmed. They’re starting to complain in larger numbers, and more vociferously.
They’re complaining about hospital-level cleaning and on-site cooking being replaced by “horrendous” filth and “airplane food” or “TV dinners”.
They’re complaining about cutbacks and increasing numbers of casual, less skilled workers making providing decent care nearly impossible, even for the many admirable caregivers out there. “Things are not getting done. Pure and simple,” elaborates Lyne England, a nurse who chairs the Regional Family Council Advisory Committee (comprised of relatives and friends of people in care) and is on the board of the Association of Advocates for Care Reform. “We know people aren’t getting turned. They aren’t getting fed in a leisurely manner. They aren’t getting toileted as frequently as they should. They’re told to relieve themselves in their briefs.”
But what residents and relatives are finding is a residential care system which, from caregivers up to health authority executives, has long been accustomed to having King-ly, unchallengeable legal powers and simply ignoring seniors’ rights.
BC Ombudsman Kim Carter clarifies she’s investigating residential care primarily because so many individuals with unresolved complaints have asked, “Where can I go?”
“There’s seemingly no accountability,” confirms England. She points to how particular local facilities have, arguably illegally, unilaterally begun bleeding helpless patients for the costs of medically necessary items like briefs or specialized beds yet, after two years of complaints, VIHA still simply comments the practices are “under review”.
England also notes that increasing acts of “retribution” by care home staff with seeming impunity has created “pervasive fear” among residents and families alike. “Residents are worried about speaking out because they fear… not having their care provided in a timely manner, or being avoided, or…” England continues by mentioning Bud Maclean, who gained fame when his late-wife’s meals went to nutrition experts. Maclean says staff informed him that, if he didn’t stop complaining, “[We] can put you out of here and you won’t be allowed to see your wife.” VIHA CEO Howard Waldner ultimately personally acknowledged that staff treated Maclean inappropriately. Nevertheless, says Maclean, little changed.
Phillip Jamieson, a former police officer, BC Police Commission executive, and president of a Saanich family council, observes residential care providers and VIHA act like an authoritarian, self-protecting “cult”. “I don’t intimidate that easily. I’ve met murderers,” he says. “But I would say [attempting to intimidate] is the way they operate normally… If there’s criticism of them, they circle the wagons and shoot inward.”
And it was into all of this that Joan and Kim recently walked.
Caught in the System
Joan had been living at home with her son Ted when, in 2006, a doctor’s medication error hospitalized her. While she was recovering, unbeknownst to Kim, Ted had Joan designate him as her health care decision-maker. Normally, such representation agreements become effective if the person’s ever deemed incapable; unusually, this was “effective upon execution”. Shortly thereafter, Ted informed Kim their mother was going into long term care.
But over time, Joan began expressing ever more strongly to Kim that she wanted to go home. And witnessing the same degenerating care conditions many others had, Kim began to think the facility was making her mother not only unhappy but physically worse. Like many, though, Kim found expressing concern wasn’t received well.
For example, Joan kept complaining about “feeling drugged” and enervated. Kim worried, because she’d seen studies showing overprescribing to the elderly is widespread, particularly of psychiatric drugs for behaviour control in understaffed facilities. Only after much conflict did Kim obtain Joan’s prescription list.
“I was dumbfounded,” she says. Amongst other medications, Joan was being given antidepressants, antipsychotics, addictive sedatives, and powerful opioids. A Texas toxicology firm told Kim the regime was “very dangerous” and indicative of “a serious failure in judgment by her care providers”.
Ted still felt the facility provided good care, and said Joan told him she liked it. Kim said Joan wanted out, and she was willing to care for her. Two lodge doctors have stated that Joan is “incapable” of making her own decisions due to progressing dementia, thereby helping solidify Ted’s authority through the representation agreement.
Everyone agrees Joan has some short term memory loss, and can be suggestible, but people disagree deeply on what Joan truly wants and how severely Joan’s mental faculties have been affected. So legal battles have ensued. Who has the right to control Joan’s life?
Independent experts warn me against taking sides in complicated familial conflicts, and not to presume I can evaluate or fairly represent a person with Joan’s profile to readers. So I take a different tack: examining how the health professionals are rendering those same decisions.
Poring over court affidavits, correspondence, and daily lodge staff notes, I discover a veritable testament to BC’s new, dangerous combination of rights-stripping laws, residential care system despotism, and deteriorating quality of care.
Questionable Uses of Power
Two things immediately seem transparent. First, Joan frequently expresses intense dislike for life at the lodge, but the care providers believe they know what’s best and just as frequently dismiss, distort or misrepresent Joan’s experiences and wishes. Second, apparently because Kim, unlike Ted, often expresses concerns about quality of care, the health professionals engage in dubious efforts to cut her out of the picture, much like happened to Bud Maclean.
For example, Kim asked to get a second opinion on Joan’s status from a psychogeriatrician. The lodge doctor simply refused. The doctor even added the remarkable corollary that he personally be present if Joan ever did see a specialist.
Then, while explaining in affidavits why Joan needs to stay at the lodge, this doctor paints Joan as having “no understanding or appreciation for what is happening around her” and being “incapable of understanding or appreciating her health care and other personal needs”. Conversely, when their director of care emphasizes Joan’s safety and autonomy at the lodge, she explains Joan easily manages her own washing, dressing and virtually every aspect of her personal care.
But this director argues Joan is vulnerable due to her having experiences “not based in reality”, like “that she is being drugged”-without mentioning Joan is being administered several mind-altering drugs. Ironically, elsewhere the director blames Kim’s complaints to staff for often making Joan become “agitated” in ways that “require administration of a sedating medication”.
Even more worrisomely, Joan accused two staff members of sexually assaulting her. Kim believed her. The lodge didn’t contact police nor send Joan to hospital for evaluation. Since the lodge’s own review found no conclusive evidence, several affidavits then present Joan’s accusation as more evidence of Joan’s “delusions”.
The only other evidence of Joan’s delusions offered is that she believes the lodge “is running a prostitution ring”. But examining the lodge’s own daily notes, it seems Joan’s dislike for the lodge is nearly constant, and what she’s doing is comparing it to a contemptible brothel where women are confined, drugged and raped: “[she complained the pills] were knocking her out… You can’t hold me here against my will. I’m not a prostitute… I’m tired of being raped by you people!… I’m in a brothel… they treat me like something off of the street here…”
The health professionals frequently find other creative ways to exculpate themselves, and undermine Kim and her relationship with her mother.
For example, innumerable staff notes describing Joan’s moods are indistinguishable from common side effects of her medications: agitation, drowsiness, memory loss, sleep disturbance… Nevertheless, despite Kim having raised concerns often, not once in hundreds of staff notes can I find a suggestion Joan might be experiencing any drug side effects. On the contrary, at one point, staff discussed Joan’s increasing difficulty sleeping and supposed the cause was Kim visiting too often. The lodge doctor then “prescribed” that Joan only be visited twice weekly for two hours.
When Joan hand-wrote a letter stating she didn’t want her visits with Kim or anyone restricted, the lodge concluded it was “unlikely” Joan had the mental capability to write the letter herself, and ignored it.
Yet Carol Pickup had witnessed Joan writing it. Trained by Seniors Entitlement Services as an advocate, Pickup was formerly a nurse, hospital trustee, Saanich councillor and CRD director. Pickup has been meeting with Joan for a year. “When they say [Joan] is incompetent and not able to comprehend what’s going on, I find that to be absolute nonsense,” comments Pickup. “I see a collusion between health personnel and family members and legal entities which shouldn’t be happening in that way.”
So Joan eventually got her own lawyer. He determined she was legally capable and “consistently” wanted Kim as her health care decision-maker. Joan signed a new representation agreement.
Finally, Kim brought Joan home.
The next day, while Kim, Joan and family council advocate Lyne England were chatting, police arrived. The lodge doctor had trumped the new representation agreement: he’d suddenly declared Joan dangerously mentally ill under the Mental Health Act. So three police officers crashed the ladies’ tea party and escorted Joan to an ambulance.
“It was a nightmare!” cries England.
Joan, however, never entered the psychiatric hospital. A new psychiatrist conducted an MMSE test and, after ten minutes, pronounced Joan indeed mentally ill but miraculously improved enough to immediately be placed “on leave” from hospital-and incarcerated at the lodge she’d just left.
This psychiatrist’s “treatment plan” listed the names of everyone in the extended family allowed to visit her, and curtailed visits from Kim, her husband, or anyone they might send. No reasons were given.
“Who in god’s name would think this was possible, that people could actually put you away like this?” cries Kim. “I want my mother to live the way she wants to live. I want her to have a voice.”
While she’d never witnessed psychiatric abduction before, England says she’s seen many cases where seniors’ rights have been similarly trampled by caregivers who either believed they knew best, or had hidden, sometimes exploitative intentions.
“It’s not unusual,” says England. “Do you hear a lot about it? No. Unless you happen to be an advocate for people in care.”
And what happens if the lead doctor is engaged in malpractice, or mistaken? Ultimately, doctors regulate themselves through the BC College of Physicians and Surgeons, and are historically more likely to defend than sanction one another. Meanwhile, court actions require one doctor to testify against another. But doctors weigh such actions exceedingly carefully because, like clashes of titans, challenging each other frequently would ultimately weaken the powers of them all.
Mercifully, though yet to be proclaimed law, many improvements have recently been made to BC’s guardianship laws. (Bill 29 and Bill 26 have passed 3rd reading. These government public consultation documents provide a good overview.) These give us more rights to compose advance directives, enforce family mediation and, crucially, maintain control over parts of our lives even if deemed incapable of managing other parts.
“It’s a very big deal,” says CCEL’s Watts. “This is law that affects every single person.” She’s “very pleased”, but adds “unknowns” remain.
It’s still unclear, for example, how capability will be determined, how detailed the process will be, and who’ll be on evaluation teams.
Watts also notes few professionals or laypeople truly know or follow current laws. “I haven’t seen a plan for a public education roll-out. My fear is that disconnect will only get bigger.”
She also regrets one law remains unchanged, still trumping all these new laws-the one that recaptured Joan. “The Mental Health Act is in dire need of a complete overhaul… It’s a very, very big stick, and I don’t think it’s at all reflective of the modernization of the guardianship legislation.”
Under BC’s Mental Health Act, you can be confined and your life carefully controlled merely if you’re in danger of experiencing “mental or physical deterioration”-technically, you can be committed for aging.
But CCEL’s Robert Gordon advises an overhaul of this “appalling” law is unlikely. “This is heresy,” he says. “[Health Minister] George Abbott will probably run screaming from the room… It’s red hot.”
Gordon says most health professionals regard the broadly discretionary powers as a “comfy blanket”, and resist incorporating civil rights. “People in the health care system… find great comfort from having the Mental Health Act.”
Regardless, there are other ways to strengthen seniors’ rights.
“Every person occupying a long term care bed should have an advocate,” says England adamantly. She feels we also need more family councils independent from VIHA, a provincially-empowered seniors advocate, and “whistleblower protection” for caregivers.
While publicly-funded facilities provide information about resuscitation and TV hookups, England would like to see them pledging regular meals and baths. “There’s no contract for care when you take your loved one to a long term care facility and you leave them there.”
Ex-police officer Jamieson suggests a charter of rights for people in care. “Even a prisoner in a facility has certain rights,” he comments.
Kim believes we also need to question our indifference to seniors. “If any one of us had this happen to them, would we want people to just walk away and say, ‘Well, you’re old, that’s what happens to you’?”
Click here to read the update to this article.