There are many protections ostensibly available to older adults in congregate settings in Ontario. At first blush, it appears as if older adults have many rights, and a large array of mechanisms available to them to enforce these rights. Upon further examination, it becomes evident that while these rights look good on paper, they are not truly effective. The next section will analyze the legal protections currently available to older adults residing in congregate settings to systematically show how many of these rights are hollow.
Civil Litigation
One route for residents to pursue if they feel wronged is civil lawsuits. For example, if a staff member at a long-term care home injures a resident, a negligence claim can be initiated. If a resident felt that a retirement home unilaterally changed the care originally agreed to in the terms of their agreement for services, they can sue for breach of contract for care services.
However the civil justice system contains several inherent problems that are particularly detrimental to older adults residing in congregate settings. The following passage, although dealing with American nursing home lawsuits, succinctly summarizes some of the barriers facing older adults residing in congregate settings:
Nursing home claimants have few desirable litigant characteristics because of their pre-existing illnesses, nonexistent imputed earnings, and low overall economic damages. Many nursing home victims have chronic physical or mental diseases that render them incapable of seeking legal representation so many meritorious cases are never filed…The reality is that elderly nursing home residents are too infirm and have such a low life expectancy that they simply cannot wait years for a settlement or jury verdict.[35]
Turning back to Ontario, one of the most significant impediments to access to justice for older persons is money. The private bar model of law is prohibitively expensive for the majority of Ontarians. A newspaper article, which was quoted by the Honourable Warren Winkler, Chief Justice of Ontario, reported that the cost of taking a routine civil case through to a three-day trial in Ontario is about $60,000.00.[36]
Legal Aid Ontario does provide a limited number of services to older adults if they satisfy the financial requirements, but the income level required is so low that only the poorest members of society are eligible. While some older adults do qualify financially, they may own a home. Legal Aid Ontario will usually require individuals to put a lien against their house in order to receive legal assistance. Many older adults are hesitant to enter into such agreements as they are worried that they could potentially lose their home.[37] Further, many older persons are precluded from receiving legal assistance for issues affecting security of the person because Legal Aid Ontario does not provide certificates to the private bar for most civil claims, including elder abuse, violation of consent and claims against long-term care homes.
Second, even if a resident is able to afford a lawyer, there is an insufficient number of lawyers with the appropriate knowledge and experience to provide competent representation. At present, only a small proportion of the bar directly advises or represents the older adults themselves. While ACE and community legal aid clinics provide such services, we are inundated with work and have limited resources to assist everyone who contacts us. Few lawyers have experience with the types of legal problems that have a specific impact on the older population, such as issues in retirement homes, long-term care, defence of guardianship applications, health care consent and elder abuse.
Even when lawyers do agree to represent persons with an elder law issue, they often fail to understand their duty to the older person. ACE has received complaints where lawyers have breached the Rules of Professional Conduct.[38] In some cases, lawyers have failed to consult with the older person who is their client; instead obtaining instructions from the older adult’s friend or family member. Besides being contrary to the Rules, they may also be putting themselves in a potential, if not actual, conflict of interest position.[39] Other lawyers who are not familiar with particular elder law issues have provided incompetent representation to the older person by not understanding the applicable law.[40]
A third reason why older adults do not have access to the justice system is the lengthy amount of time it takes to resolve a court case. This is especially troublesome for long-term care residents who are often in declining health. According to Justice Winkler, “civil litigation in this province is too expensive and too slow, with the result that many people in Ontario may be denied access to justice.”[41] Many older adults choose not to initiate legal proceedings, even if their case appears to be meritorious, because it may take many years and there is the possibility that they may die before a resolution is reached. In fact, this is a strategy used by defendants: stall the process because the plaintiff may die before any resolution, usually resulting in the nullification of the claim.
Fourth, older adults are reluctant to pursue a civil case because there is a lack of an established body of law respecting lawsuits against retirement and long-term care homes. Based on our own research, ACE could find very few reported cases involving actions against long-term care homes or retirement homes by residents.
Fifth, an extra disincentive for older persons in seeking access to justice is the lack of monetary awards in successful cases. ACE generally does not recommend that older adults commence lawsuits where they are primarily seeking financial compensation because very few types of damages options are available and the amounts awarded are small.
Actions for wrongful death are not permitted in Ontario. If an older adult were to die, dependents of the older adult could only bring a derivative action for the loss of care and companionship pursuant to the Family Law Act.[42]
Older persons usually cannot claim damages for loss of income because they are no longer working. As well, the courts have narrowly interpreted damages for loss of companionship. In a British Columbia case where a 77-year old woman died due to the negligence of an aide in a nursing home, the court refused to award any damages to the woman’s children because “their mother had long ceased to be a companion for she had been physically, mentally and emotionally incapacitated for a considerable time before her death.”[43] This judgment is alarming as it infers that a person can harm an older person with impunity and not be held accountable by the civil justice system.
Criminal Penalties
Alleged perpetrators of crimes against older adults can be charged with a myriad of offences under the Criminal Code of Canada. There are several provisions applicable in cases of possible abuse of older adults, including: theft; theft by a person holding a power of attorney; criminal breach of trust; extortion; forgery; fraud; failure to provide the necessities of life; criminal negligence causing bodily harm; assault; sexual assault; forcible confinement; criminal harassment; uttering threats; intimidation; and harassing phone calls.
There are challenges in using the criminal justice system to seek redress for crimes that take place in congregate settings. Staff at a congregate setting may fail to identify that a crime has occurred and, consequently, fail to report incidents to the police. Some operators may choose to address an issue internally as a matter of staff discipline because they do not want the adverse publicity that may result from criminal proceedings. If staff do report the alleged crime, the police may not understand the institutional environment or the rules and regulations that apply in these settings. This lack of knowledge may hamper the appropriate investigation of crimes. Police may be uncomfortable in investigating alleged crimes within a facility as they may have limited understanding and appreciation of mental capacity and physical disability and how this may impact on the ability of witnesses to testify and make statements. The police may assume that a resident lacks capacity when in fact that person, although cognitively impaired or diagnosed as having Alzheimer’s disease or a related disorder, may still retain the capacity to be an effective witness. Even if they lay charges, the police may face the challenge of a reluctant Crown attorney who feels there is insufficient evidence to proceed to a successful prosecution, despite the results of the police investigation.
For older adults, delays in the administration of justice can mean that the victims are deceased or incapable by the time their case goes to trial. In a Supreme Court of Canada decision, R. v. Khelawon, the manager of a retirement home was accused of assaulting five different residents.[44] By the time of trial, four of the victims had died, and the remaining victim was incapable of testifying because he was no longer competent. This delay ultimately resulted in an acquittal for the accused. Since none of the victims were able to testify on their own behalf, the only form of evidence consisted of videotaped statements made by the victims after the assaults, which were later ruled inadmissible in court. The Supreme Court upheld this decision on appeal from the Crown because of the unreliability of the videotaped statements.
R. v. Campoli was another case where charges of assault against an elderly person were difficult to pursue because the victim was not able to testify on her own behalf.[45] Here, a personal support worker employed at a retirement residence was accused of assaulting an elderly woman under his care. By the time the case went to trial, the victim had passed away. The Ontario Court of Justice held that a videotaped statement made by the victim some three weeks after the first allegation was hearsay and therefore inadmissible in court. This case has not yet been resolved, so it remains to be seen whether there is sufficient evidence for a conviction to be obtained without the victim’s testimony.
Informed Consent
Ontario has comprehensive legislation, namely the Health Care Consent Act, 1996[46] and Substitute Decisions Act, 1992,[47] governing decision-making for all people in the province. The law requires that health practitioners obtain informed consent to treatment from all individuals who are capable. Where the person is incapable, informed consent must be obtained from the person’s substitute decision-maker. However, these requirements continue to be ignored and are often the focus of complaints at ACE by both residents and their substitute decision-makers. We are frequently contacted by substitute decision-makers who have discovered that a mentally incapable person has been given a medication about which the substitute decision-maker knows nothing, and it is often not until they call us do they learn of the health practitioner’s legal obligation to obtain informed consent prior to commencing treatment. This scenario is more common in long-term care homes as the substitute decision-maker may not be aware of or present during the resident’s appointment with the physician who provides care to the home, whereas in the community, the older adult often would have been accompanied by the substitute decision-maker.
Usually, but not always, the complaints are about the prescribing of antipsychotic medication, which have the potential for serious side-effects or may, in fact, be contraindicated for use in the elderly. Antipsychotic drugs were initially developed in the 1950s to treat conditions such as schizophrenia but have become widely used in long-term care homes to manage behavioural disturbances and agitation associated with dementia. By 2000, in addition to the known side-effects (e.g., sedation, falls and hip fractures, cardiac complications, weight gain, metabolic complications, neuroleptic malignant syndrome and cognitive decline), studies showed that the use of antipsychotic medications for older adults with dementia is associated with a slight increase in the risk of death.[48] The United States Food and Drug Association and Health Canada subsequently issued regulatory warnings, with the Food and Drug Association also requiring certain medications to be packaged with a “black box” warning describing the risks associated with use of these medications to treat dementia in the elderly.[49]
According to the Canadian Institute for Health Information, in 2006-2007, 37.7% of residents residing in long-term care homes on public drug programs were prescribed antipsychotics versus only 2.6% of older adults living in the community.[50] During this same time period, 52.2% of residents with claims for anti-dementia drugs also had claims for atypical antipsychotics, compared to 21.3% of older adults living in the community. As a result:
The higher rate of antipsychotic use among seniors using anti-dementia drugs in nursing homes may suggest that there are factors in addition to differences in prevalence of dementia that contribute to variation in the rates of antipsychotic use.[51]
Studies indicate that older adults residing in long-term care homes in Canada are more likely to use atypical antipsychotics than those living in the community. The data from the studies of Hagen et al. and Conn et al., suggest that “Canadian rates of antipsychotic use in long-term care facilities may be among the highest in the developed world.”[52] It was also noted by Hagen et al. that there is a tendency to keep residents on antipsychotics once they are taking antipsychotics. This is despite the fact that the risk of side-effects rises dramatically over time and other studies have demonstrated that the majority of long-term care residents receiving antipsychotics for behavioural problems can have these medications safely and effectively withdrawn without an increase in difficult behaviours.[53] Bronskill et al. found that a quarter of residents were prescribed antipsychotic agents within a year of admission.[54] Further, 86% of residents were prescribed neuroleptic medications without any specialist contact while 10% of the neuroleptic therapies were dispensed at a dose higher than the recommended threshold.[55] Rochon et al. found that residents with a diagnosis of psychoses or dementia were the most likely to be given antipsychotic therapy if they lived in a facility with a high antipsychotic prescribing rate. In the words of the researchers:
These results suggest that antipsychotic therapy is not being prescribed based on their clinical indication. Rather, the decision to prescribe an antipsychotic therapy appears to be related to the nursing home environment, with some environments being more permissive about antipsychotic use.[56]
Many long-term care homes routinely fail to obtain consent to treatment at all. Other homes attempt to obtain “blanket” consents at the time of admission which purportedly apply to all treatments that might be prescribed during the course of their stay. This is not legal as it in no way meets the requirements of “informed” consent as defined by the Health Care Consent Act.[57] In some homes, treatment will be started, and some time thereafter a staff member will contact the substitute decision-maker to “advise” them that the resident is now taking the medication, leaving no option open for “consent.”
In addition to the requirements of consent, the current legislation governing long-term care homes requires a resident’s plan of care to be reviewed at least quarterly by the multidisciplinary team.[58] The licensee of the home has an obligation to ensure that the resident and, where applicable, their substitute decision-maker, have an opportunity to participate.[59] Care conferences are an important right as they are often the only time that the resident and/or their substitute decision-maker are provided with information about the resident’s care and given an opportunity to ask questions. According to the Ontario Health Quality Council, only two-thirds of residents and their family or friends were encouraged to be involved in decisions about the resident’s care. The rest were not encouraged, or only occasionally, to get involved.[60]
Complaints against Regulated Health Professionals
If a capable person or their substitute decision-maker wishes to hold a regulated health care practitioner accountable for their failure to obtain valid consent, a complaint must be made to the regulated profession responsible for overseeing the particular health profession (e.g., College of Physicians and Surgeons of Ontario and College of Nurses).
It is ACE’s experience that the complaints process is lengthy and, if legal counsel is retained, expensive. Some of our clients opt not to make a complaint because it will take too long to address a problem that needs to be addressed immediately.
In the past, ACE represented a substitute decision-maker in a case where a physician in a long-term care home prescribed a medication to a resident without obtaining consent. The physician claimed it was standard practice in nursing homes throughout Canada to make treatment decisions and to let the staff at the home “inform” the family of the treatment after the fact. A complaint was made to the College of Physicians and Surgeons of Ontario and the decision of the Complaints Committee was appealed to the Health Professions Appeal and Review Board on two occasions. Eventually, the Committee obtained an expert opinion confirming “it is a long-standing practice for physicians to give orders for patients’ medications, and for families, if they have concerns, to discuss these with the attending physician (albeit after the fact of the medication having been prescribed).” Neither the Committee nor the Board disagreed with this opinion, despite what we would argue would be a blatant disregard for the law. Therefore, it can be concluded that even regulatory colleges and administrative tribunals may not promote compliance or enforcement of the existing law.[61] However, it must be emphasized that this case should not stand for the proposition that the requirement for consent should be changed. Instead, it flags the need to look at how the regulatory Colleges ensure compliance with the law, how basic requirements for consent are being operationalized within health facilities and whether the lack of compliance within settings, such as long-term care homes, are reflective of institutionalized discrimination on the basis of age and disability.
It should be noted that the workers who provide the bulk of the hands-on care in long-term care and retirement homes are personal support workers (also known as health care aides). These workers are not regulated and must work under the supervision of a regulated health professional, which is usually a registered nurse. Therefore, when issues arise regarding the quality or competency of these staff members, the only way to bring a College complaint is to bring it against the supervising staff member. While they are ultimately responsible, it is often felt not to be appropriate to take action against this person. It also means that it is difficult to hold unregulated staff members accountable for their actions, as there is no independent College to complain to, and the institutions themselves are often reluctant or unable to properly discipline these employees.
Finally, the legislation governing long-term care homes requires that consent be obtained.[62] It would therefore appear that the lack of informed consent could be the basis for complaint to the Ministry of Health and Long-Term Care and be enforceable by their compliance advisors. This would be a quicker and potentially more effective way of dealing with the issue. However, our experience has been that despite this statutory requirement, the standard response is that it should be dealt with by the various professional Colleges.
Consent and Capacity Board Proceedings
Individuals who have been found incapable with respect to treatment, property, personal health information and admission to long-term care may apply to the Consent and Capacity Board to challenge these findings. For persons found to be treatment incapable who are not in-patients at psychiatric facilities, rights information is supposed to be provided to them. Health care practitioners have an obligation to provide information to the incapable person in accordance with the requirements set out by their profession’s governing body.[63] There are no legislative requirements for any specific paperwork to be completed.
Unfortunately, many health care practitioners fail to satisfy even the minimal requirement of providing rights information to individuals: residents are not informed when they are found incapable nor are they made aware of their statutory rights and the procedures available to exercise these rights.
There are also problems with the policies of the various health Colleges respecting rights information. By requiring health practitioners to follow the policies of their Colleges, they could be subject to discipline proceedings if they fail to provide rights information. However, the policies of the Colleges do not necessarily ensure that the patient would have the information necessary for the purpose of due process. As well, it is questionable at to whether the Colleges enforce this requirement or discipline practitioners who fail to comply.
One illustration of this problem is the rights information policy of the College of Physicians and Surgeons. Physicians are directed by the College of Physicians and Surgeons of Ontario to inform the incapable person that a substitute decision-maker is responsible for making treatment decisions.[64] Where the patient disagrees with the need for a substitute decision-maker or disagrees with the involvement of the present substitute, the physician “must advise the patient of his or her options” which “include finding another substitute of the same or more senior rank, and/or applying to the Consent and Capacity Board for a review of the finding of incapacity.”[65] A physician has a duty to “reasonably” assist the patient if he or she expresses a wish to exercise these options. This policy does not go far enough to ensure that the alleged incapable person can exercise their rights or that the patient is informed of the process to challenge the finding of incapacity. The policy is too narrow, as it suggests that the physician does not have a duty to provide patients with information about their rights before the Board if they disagree with the finding of incapacity (as opposed to having a substitute decision-maker) or if they do not explicitly voice their disagreement.
The Health Care Consent Act contains similar requirements for consent to admission to a long-term care home. However, it does not specifically require evaluators, a specified category of health practitioners, to provide rights information to the individuals they find incapable of consenting to admission a care home.[66] The practice of most evaluators is to give a rights information sheet to incapable individuals, although the information may be unclear and misleading. There is no guarantee that the person will be assisted by the evaluator in obtaining legal assistance or contacting the Consent and Capacity Board to initiate the process to challenge the finding of incapacity.
Statistics obtained from the Consent and Capacity Board indicate that only 61 people in 2007 and 81 people in 2008 had a hearing to dispute the finding of incapacity respecting admission to long-term care.[67] Considering that there are approximately 76,000 long-term care residents in the province and such a small number of applications, it leads us to speculate that many older adults are not receiving rights information.
Office of the Public Guardian and Trustee
According to its website, the Office of the Public Guardian and Trustee “delivers a unique and diverse range of services that safeguard the legal, personal and financial interests of private individuals and estates.”[68]
Included amongst its responsibilities is a statutory duty to investigate any allegations that a mentally incapable adult is suffering, or at risk of suffering, serious adverse effects.[69] It has been ACE’s experience, however, that the Public and Guardian and Trustee has interpreted its duties very narrowly, saying it is an “service of last resort,” and does not use its authority to intervene and investigate often enough. Friends, family members and health practitioners concerned about the welfare of an older person often call ACE in frustration after being told by the Public Guardian and Trustee that an investigation will not be completed. These people often feel powerless to help the older person because one of their few legal options is to make a court application for guardianship. This is a lengthy and expensive process which is inaccessible for the average person.
Landlord and Tenant Board Hearings
Pursuant to the Residential Tenancies Act, residents of retirement homes can file an application with the Landlord and Tenant Board to dispute certain actions of the landlord. For instance, if there is no written tenancy agreement, or if the agreement does not set out what has been agreed to for care services and meals, the tenant can file an application with the Board for an abatement of rent.
ACE has been involved in several cases where homes ostensibly appear to satisfy the statutory criteria to be a care home but they do not self-identify as such. Consequently, these homes do not abide by the special provisions in the Residential Tenancies Act governing care homes, meaning residents are either not made aware of their rights or are denied their legal entitlements.
One of the protections enshrined in the Residential Tenancies Act is the obligation on the landlord of the retirement home to give the new tenant a copy of a “care home information package” (also known as a CHIP) before entering into a tenancy agreement.[70] If the landlord does not provide the care home information package, the landlord cannot increase the rent or any charges for meals or care services until the required information is given to the tenant.[71]
While it is laudable that landlords are required to provide a CHIP, it is logical to assume that if the residents are not given a CHIP, they would not be made aware of their rights under the law, such as the aforementioned abatement of rent application. Further, if the landlord does not comply with this simple legal requirement, one wonders whether they would be in compliance with others.
Residents are often intimidated by the landlord and fear that they will be viewed as a trouble-maker or asked to leave the retirement home if they challenge the landlord. They will therefore not attempt to enforce their rights as they are afraid of the possible implications if they do so. While retirement home residents cannot be evicted without due process, they are often led to believe they can be, and residents are sometimes threatened with immediate eviction or they witness the unlawful eviction of a fellow tenant.
Another requirement under this legislation which is unique to care homes is that residents can be “transferred” from a care home if they no longer need the care required or where their needs are higher than the level the home provides. However, the landlord cannot do this unilaterally: they must obtain an order from the Landlord and Tenant Board. There have only been a small number of these applications – 12 since June 1998 – to the Board.[72] Regrettably, it is all too common for landlords to tell residents they have to leave, or to refuse to allow residents to return from hospital, telling them they have been “discharged”, without going to the Board. Residents, as well as hospital staff and other professionals, are often unaware that care homes cannot simply refuse to have residents return, or that they cannot discharge without lawful authority, and therefore simply comply with whatever they are told.
Human Rights Complaints
A person who believes they have been discriminated against on the basis of an enumerated ground(s) in the Human Rights Code can file a complaint with the Human Rights Tribunal of Ontario where the discrimination occurs with respect to employment, housing, contracts, services, goods or facilities.
The human rights system was overhauled in June of 2008. Previously, discrimination claims were made to the Ontario Human Rights Commission which investigated complaints before making a decision whether or not to refer the case to the Tribunal. Long delays ensued and it was not uncommon for complaints to take in excess of five years to be determined. Consequently, ACE would not normally recommend that its clients file human rights complaints due to the inordinate delay and the reality that many of our clients would not live to see a resolution. ACE has had little experience with the new system so we are unable to comment on its effectiveness at this point in time.
Community Care Access Centres
A Community Care Access Centre (CCAC) is a non-profit agency, funded by its Local Health Integration Network (LHIN) through the Ministry of Health and Long-Term Care. It is responsible for providing eligible people in a particular geographic area with publicly-funded in-home and community care, as well as to manage the placement process for those requiring long-term care homes. There are 14 CCACs in Ontario and there is no user fee for their services. With regards to long-term care homes, CCACs perform the following functions: completes applications; determines eligibility for admission; authorizes admission; maintains the waiting list for admission to all long-term care homes; and offers placement in the homes.
While outside the purview of our paper, it is important to note that complaints about the placement process are one of the most common calls that we receive at ACE. While the process would appear to be heavily regulated, issues arise daily regarding the actions of both the CCAC and the hospital. The present apparent lack of long-term care home beds, as well as hospital overcrowding, has led to continued problems in the placement sector which often results in the failure to ensure that the applicant’s rights are being respected.
ACTION Line, Compliance and Enforcement in Long-Term Care Homes
The Ministry of Health and Long-Term Care operates a telephone service, known as the ACTION Line, primarily for residents of long-term care homes to report any concerns about their care and the services provided by the long-term care home. Between 2004 and 2008, 19,347 calls were made to the ACTION Line.[73] An operator assesses the urgency of the situation and forwards the information to a compliance adviser to complete an investigation. Between 2004 and 2008, 2,895 calls to the ACTION Line were referred to a compliance advisor.[74] The Ministry also conducts regular annual reviews of all long-term care homes.
ACE is regularly advised by its clients about problems with the Ministry’s investigation process, including the following:
· The failure to investigate allegations;
· The inability to conduct a proper investigation and substantiate a claim;
· The inconsistent quality of investigation by individual compliance advisors; and
· The inability of compliance advisors to make a determination about the complaint.
In our practice, ACE has heard about residents who do not have calls returned by the ACTION Line. Furthermore, we are aware of some situations where compliance advisors will not intervene despite the importance of the issue to the resident and the lack of options available to the resident, claiming that the Ministry does not provide assistance for the specific type of issue. For instance, access to residents (visits) is sometimes prohibited by the care providers on the instructions of a third party, despite the existence of the Resident’s Bill of Rights which states: “Every resident has the right to communicate in confidence, to receive visitors of his or her choice and to consult in private with any person without interference.”[75] While a third party may have some legal authority to make decisions for the person through a power of attorney or other legal mechanism, these powers are not all-encompassing. The capacity to decide who may visit or what contact an older person may wish to have is one that may remain intact long after other types of capacity have been lost. A senior may continue to enjoy contact with relatives and acquaintances long after the senior has stopped being able to manage property, to make treatment decisions or to retain recent memory. The comfort derived from human contact is a very basic comfort which can have a large impact on an individual’s quality of life, and requires a low level of capacity-making ability. Even where the person lacks this capacity, there may be nobody with the authority to prevent visitors from attending, as this is not an area for which there is always statutory authority to make a decision. However, if the visitor is harming or attempting to harm the resident, a guardian or attorney for personal care may have authority to restrict visitors under their authority to make “safety” decisions in the Substitute Decisions Act. Despite the restrictions on substitute decision-makers in making such decisions, and the right of a resident to have visitors, compliance advisors will generally refuse to take action when this issue is brought to their attention.
It should also be understood that most complainants do not receive a copy of the detailed report of the results of the investigation. The information provided to the complainant is usually only whether the complaint was verified, not verified or unable to verify and perhaps a little information about what may have been done to correct the issue. To obtain a copy of the detailed report, one must make a formal freedom of information request.
The Ministry makes it mandatory for long-term care homes to post their inspection reports in a public place in the home.[76] While potential residents and their families are entitled to receive a copy of the inspection report from the home upon request, they often meet with resistance in exercising this right. The Ministry also posts general information about those reports on its website and encourages those considering admission to a long-term care home to check the reports. Many people are unaware of the existence of the website, nor are they advised that the information is only a small snapshot at the point in time when the inspection was conducted, and is not the detailed inspection report which is, in fact, publicly available. Older adults grew up in a different technological generation and many are not accustomed to using the internet or other electronic resources.
According to information from the Ministry itself, there is “considerable evidence that the current compliance system is not meeting public expectations for ensuring safety and well-being of our seniors.”[77] A study by the Canadian Press analyzed inspection reports from April 2007 to March 2008 and found that almost three-quarters of homes were not meeting provincial standards.[78] At one home, it was reported that were 16 residents who had restraints applied incorrectly. Despite this, potential residents and families looking for homes are often pressured to apply for admission to homes with lengthy lists of unmet standards and criteria, citations under the legislation, and verified complaints. Residents of homes with these lengthy lists of violations continue to have to reside there. Even when homes are closed to admissions because of serious deficiencies, residents continue to have to reside in these homes.
Recognizing the need to improve the current system, coupled with the new Long-Term Care Homes Act, 2007 the Ministry is in the process of transforming its compliance inspection program. The Ministry claims that the new inspection process will be resident-outcome focused rather than process driven. Compliance inspectors will gather information through interviews with residents and family members, as well as visual observations. Information will be collected using clinically validated survey methodology. Inspectors will not be continuing their current practice of inspecting against the more than 400 standards which exist.[79] Until this process is in place, ACE can not comment on the effectiveness of this system.
Section 25(1) of the Nursing Homes Act requires that any person other than a resident who believes that a resident has or may suffer harm as a result of unlawful conduct, improper or incompetent treatment or care or neglect must report it to the Director. While the Homes for the Aged and Rest Homes Act and the Charitable Homes Act do not include a similar section, reporting is required in those homes as a matter of Ministry of Health and Long-Term Care policy. There is to be no penalty against someone who makes such a report unless it is done maliciously or without reasonable grounds.[80] This applies to both employees of the home as well as visitors. Unfortunately, this requirement is unknown to most staff and visitors. Despite regulations to the contrary, there are often repercussions against those who have made complaints. Employees have reported being fired, contractors have had their contracts terminated, and family members have been barred from homes for making complaints. In our experience, the Ministry has not taken steps to rectify these situations. Furthermore, in cases where family members are barred by the home under the Trespass to Property Act, the Ministry has not acted, although such restrictions do not have a solid legal basis.[81]
Complaints Response and Information Service (CRIS Line)
The Ontario government provides funding to the Ontario Retirement Communities Association (ORCA), a voluntary trade organization that sets professional operating standards and accredits retirement residences, to maintain a hotline described as a “Complaints Response and Information Service” (otherwise known as the CRIS Line). Tenants may call to get information about retirement homes services and accommodation options and to obtain help resolving complaints about a retirement home. If complaints against particular homes are not resolved, the date of the complaint, the name of the home, and information as to the nature of the complaint may be posted on the ORCA website. Since its inception on September 1, 2000, the CRIS line has not had any unresolved complaints.[82]
While the funding for the CRIS Line requires it to attempt to resolve complaints about both ORCA and non-ORCA homes, ORCA does not have the authority to force non-member homes to change in response to complaints. Member homes may be threatened with loss of membership if they fail to comply with ORCA standards. Older adults who know about and have used the CRIS Line have expressed concerns to ACE that is not independent as it is operated by an industry organization.
Based on our focus groups with residents and conversations with clients, many older adults do not seem to know about the existence of the CRIS Line.
Ombudsman of Ontario
The Ombudsman does not presently have jurisdiction over hospitals and long-term care homes although he does have authority over government services and the actions of government employees. Thus, if residents of long-term care homes or their representatives are dissatisfied with the way in which the Compliance Adviser or the Ministry of Health and Long-Term Care deals with their issue, a complaint can be made to the Ombudsman of Ontario.
At present, the Ombudsman’s Special Ombudsman Response Team (SORT) is reviewing the ability of the Ministry of Health and Long-Term Care to monitor long-term care homes and its effectiveness in ensuring the homes meet government standards. This report is due at the end of the summer 2009.
Information and Privacy Commissioner of Ontario
Any person can seek assistance from the Information and Privacy Commissioner if there are issues regarding privacy or access to personal health information. Some examples where recourse may be sought from the Information and Privacy Commissioner include: a breach of a resident’s privacy (e.g., a hospital gave personal information to a third party without consent); refusal by a long-term care home to allow the resident or their substitute decision-maker access to the resident’s records; and cost issues involving access of resident’s records.
One of the overarching purposes of the Personal Health Information Protection Act is to provide individuals with a right of access to their personal health information. However, it is our experience at ACE that the public either does not know about the existence of the Personal Health Information Protection Act or that it is not well understood (by either health information custodians or the public), leading to a misunderstanding of the law. People are often not advised of their legal rights and, in fact, face numerous barriers when they attempt to do anything connected to their records of personal health information. It is very common for residents and their substitute decision-makers to be denied access to the resident’s health records because of an utter lack of knowledge by the employees of that institution of the rights and requirements under the Personal Health Information Protection Act.
As previously discussed, since health practitioners consistently fail to obtain informed consent or even inform older adults about their treatment, it is crucial that they have easy access to their own information.
Another barrier, especially for older adults on a fixed income, is the cost of obtaining copies of health records. Many institutions charge a cost recovery fee for providing access to an individual’s personal health record (although the legislation specifically permits a custodian to waive all or part of the fee associated with an access request). The amount being charged varies widely across the province. Clients of ACE, for example, have been asked to pay as much as $150 for a few pages.
Such discrepancies prompted Ann Cavoukian, the Information and Privacy Commissioner, to ask the government to address the issue of fees through regulation. The Ministry of Health and Long-Term Care published a proposed regulation concerning fees, as well as other matters, in the Ontario Gazette on March 11, 2006. To date, however, there is no regulation in place. The Office of the Information and Privacy Commissioner has mediated several complaints regarding the excessive fees being charged to obtain copies of health records. Generally, the matters were resolved and the parties agreed to pay 20 cents per page for a copy of the record. While residents can ask the Information and Privacy Commissioner to decide whether a fee is reasonable or not, they must be aware of this mechanism and be willing to go through the process.
Residents’ Bill of Rights
Upon admission to a long-term care home, a person or their substitute decision-maker must be provided with a copy of the Residents’ Bill of Rights. This document is part of the law governing long-term care homes.[83] The 19 enumerated rights are as follows:
· Every resident has the right to be treated with courtesy and respect and in a way that fully recognizes the resident’s dignity and individuality and to be free from mental and physical abuse;
· Every resident has the right to be properly sheltered, fed, clothed, groomed and cared for in a manner consistent with his or her needs;
· Every resident has the right to be told who is responsible for and who is providing the resident’s direct care;
· Every resident has the right to be afforded privacy in treatment and in caring for his or her personal needs;
· Every resident has the right to keep in his or her room and display personal possessions, pictures and furnishings in keeping with safety requirements and other residents’ rights;
· Every resident has the right,
o to be informed of his or her medical condition, treatment and proposed course of treatment,
o to give or refuse consent to treatment, including medication, in accordance with the law and to be informed of the consequences of giving or refusing consent,
o to have the opportunity to participate fully in making any decision and obtaining an independent medical opinion concerning any aspect of his or her care, including any decision concerning his or her admission, discharge or transfer to or from a nursing home, and
o to have his or her records of personal health information within the meaning of the Personal Health Information Protection Act, 2004 kept confidential in accordance with the law;
· Every resident has the right to receive reactivation and assistance towards independence consistent with his or her requirements;
· Every resident who is being considered for restraints has the right to be fully informed about the procedures and the consequences of receiving or refusing them;
· Every resident has the right to communicate in confidence, to receive visitors of his or her choice and to consult in private with any person without interference;
· Every resident whose death is likely to be imminent has the right to have members of the resident’s family present twenty-four hours per day;
· Every resident has the right to designate a person to receive information concerning any transfer or emergency hospitalization of the resident and where a person is so designated to have that person so informed forthwith;
· Every resident has the right to exercise the rights of a citizen and to raise concerns or recommend changes in policies and services on behalf of himself or herself or others to the residents’ council, nursing home staff, government officials or any other person inside or outside the nursing home, without fear of restraint, interference, coercion, discrimination or reprisal;
· Every resident has the right to form friendships, to enjoy relationships and to participate in the residents’ council;
· Every resident has the right to meet privately with his or her spouse in a room that assures privacy and, where both spouses are residents in the same nursing home, they have a right to share a room according to their wishes, if an appropriate room is available;
· Every resident has a right to pursue social, cultural, religious and other interests, to develop his or her potential and to be given reasonable provisions by the nursing home to accommodate these pursuits;
· Every resident has the right to be informed in writing of any law, rule or policy affecting the operation of the nursing home and of the procedures for initiating complaints;
· Every resident has the right to manage his or her own financial affairs where the resident is able to do so, and where the resident’s financial affairs are managed by the nursing home, to receive a quarterly accounting of any transactions undertaken on his or her behalf and to be assured that the resident’s property is managed solely on the resident’s behalf;
· Every resident has the right to live in a safe and clean environment; and
· Every resident has the right to be given access to protected areas outside the nursing home in order to enjoy outdoor activity, unless the physical setting makes this impossible.
Although the Long-Term Care Homes Act, 2007 contains 27 rights in the Bill of Rights, there are very few areas of substantial change. Instead, rights which already existed or were expressed in another form were included or expanded upon in the Bill of Rights.
A licensee is deemed to have entered into a contract with each resident of the home, agreeing to respect and promote the rights of the resident.[84] Unfortunately, there are no concrete enforcement mechanisms available to the resident in the legislation. The Long-Term Care Homes Act, 2007 stipulates that “a resident may enforce the Residents’ Bill of Rights against the licensee as though the resident and the licensee had entered into a contract under which the licensee had agreed to fully respect and promote all of the rights set out in the Residents’ Bill of Rights.”[85] It also states that regulations can be passed governing how rights set out in the Bill of Rights shall be respected and promoted by the licensee, but is unclear whether there will be any such regulations.[86]
Many administrators and operators are supportive of the Bill of Rights but they express concerns about its interpretation in a collective environment where many residents are living together. How are the rights of an individual to be interpreted in relation to the collective when individual actions may impact on the group and vice versa? Homes have a legal duty to respond to the care needs of all residents but are challenged to do so by funding and staff limitations. When complaints are made to homes about the lack of appropriate care, they are told that is “just the way things are,” or that they do not receive enough funding to provide appropriate care.
Some of the rights involve a degree of subjectivity, such as the right to be treated with dignity and respect. Residents may interpret the rights in a different manner than staff, as they are interpreting these rights through the lens of the long-term care home being their “home.” Meanwhile, staff may have a different view as the long-term care home is their workplace. For instance, one of the rights of residents is to know who is providing them with care but it is not unusual for this request to be refused. Another manifestation of the subjectivity of the interpretation of the Bill of Rights is when residents sometimes encounter difficulties regarding their right to have visitors without interference. As noted earlier in this paper, homes will, on occasion, issue trespass notices against residents’ visitors without lawful authority, usually because the visitor is considered to be too demanding or a “complainer.” ACE lawyers have also frequently had difficulty meeting in private with residents or are questioned about the purpose of their visit by staff members.
Although meant to protect and create a culture within a long-term care home, many of the rights are challenging to enforce in practice.
Residents’ and Family Councils
The majority of long-term care homes have a Residents’ Council. The current legislation says the home must assist residents to create a council if a request is made.[87] If there is no residents’ council, the home must hold a meeting at least annually to advise the residents of their right to form a council.[88] Under the new legislation, each home will be required to establish a Residents’ Council.[89]
Residents’ Councils in long-term care homes have legislated powers, including:
· Advising residents respecting their rights and obligations;
· Reviewing certain documentation of the home, such as financial information;
· Attempting to mediate and resolve disputes between residents and a licensee; and
· Reporting any concerns or recommendations to the Minister.[90]
An increasing number of homes have active Family Councils. Although Family Councils are not mentioned in the current legislation, this will change once the Long-Term Care Homes Act, 2007 is enacted and they will have powers similar to Residents’ Councils.[91]
The administration and staff at many homes view both these Councils as having a significant function in bringing issues to their attention. While they serve an important role, their actual authority is limited. For instance, Residents’ Councils have the legislative authority to report concerns or bring recommendations to the Minister[92] but this does not appear to happen in practice.
The power and success of a Council is dependent upon several factors, including the level of engagement of its members and the willingness of the home to listen. Residents Councils are also dependent upon the staff that assist them.
Based on information received from industry stakeholders at our focus group, some, but not many, retirement homes have Residents’ Councils and none, or very few, have Family Councils.
Patient Representatives or Advocates
Some hospitals, long-term care homes and retirement homes will hire patient advocates to assist patients and residents. One must be wary of this type of advocate because their objectivity may be compromised as they are paid by the institution itself. Furthermore, many of these advocates would appear to have no power and are there merely to placate those who complain when problems arise. Although these advocates can be a source of support and assistance, where there are real difficulties involving serious conflicts with the institution, it is unlikely that they will be able to advocate as strongly as most people would like, or as strongly as an advocate who is not connected with the institution due to a potential conflict of interest. In fact, we have had cases where the patient advocate has threatened the patient on behalf of the hospital!
An increasingly large number of older persons or their substitute decision-makers contact ACE with respect to first available bed policies. Essentially, these policies attempt to force hospital patients or their substitute decision-makers to accept placement at a long-term care home they would not have chosen had it not been forced upon them, contrary to the Health Care Consent Act and the long-term care legislation.[93] Although employees of Community Care Access Centres are legally responsible for the placement process, in most instances, the hospital also has a social worker or discharge planner who is the older adult’s primary contact regarding placement. One must appreciate that these people are hospital employees who are expected to enforce hospital policy, whether or not it is lawful. Although it is possible that patient advocates assist patients to contest these unlawful first available bed policies, this is generally not ACE’s experience.
Legal Clinics and Advocacy Organizations
Legal Aid Ontario funds 79 legal clinics located in communities across the province whose mandate is to provide poverty law services to low income residents of Ontario. Although only one legal clinic, ACE, specifically focuses on the representation of older adults, a number of other general legal clinics provide assistance to residents of congregate settings living within their catchment area. However, these general clinics have a high demand for service in their core practice areas (e.g., landlord and tenant and social assistance law) so the amount of time they can spend on issues affecting older adults is restricted.
Although ACE has some cross-provincial jurisdiction, its funding is limited. ACE is only funded for eight staff and has insufficient resources to provide comprehensive representation to people outside the Greater Toronto Area. Demand for individual services greatly outstrips resources. ACE’s ability to offer education sessions to groups beyond Toronto is dependent on the group covering out-of-pocket expenses to permit ACE staff to travel to a particular location. ACE also receives many calls for assistance on legal issues that are not limited to congregate settings and cannot devote all our resources to only these matters.
In addition to ACE, a small number of advocacy organizations for residents exist across the province. Perhaps the most well-known organization is Concerned Friends of Ontario Residents in Long-Term Care Facilities. Founded in 1980, Concerned Friends is dedicated to the reform of the long-term care system and improvement of quality of life for residents. The organization is supported by membership and donations without government funding and its activities are undertaken entirely by volunteers.[94]
Over the years, Concerned Friends has been influential in having resident-centred amendments added to the long-term care legislation. They advocated for the creation of ACE, Residents Councils and Family Councils, as well as the mandatory posting of compliance review reports in each home. Concerned Friends also reviews all compliance review reports and prepares report cards analyzing the overall performance of long-term care homes.[95]
Concerned Friends is hampered by its small size and lack of permanent funding in respect to the scope of assistance and advocacy it can perform. Its focus is also limited to long-term care issues, not issues impacting residents in retirement homes or hospitals.
Common Concerns from Focus Group Participants
ACE heard several common concerns during our meetings, not only from residents of retirement homes and long-term care homes, but from their representatives and stakeholders in the industry. Many of these concerns were overlapping and interrelated. The identification of some of these issues provides a better understanding of the problems facing older adults and highlights the necessity of effective access to justice mechanisms.
It should be emphasized that the majority of residents who attended our meetings expressed general satisfaction with the retirement or long-term care home where they resided. This is consistent with a recent study by the Ontario Health Quality Council where one out of nine residents felt they were not free to speak to staff when they were unhappy with care.[96] Having said that, the people who attended our focus groups tended to be the more competent and vocal residents, as opposed to the incapable and non-verbal residents who are at an increased risk of having their rights ignored. Further, as many residents were unaware of their rights, they were not aware that their rights were being infringed: in fact, they believed that they lost many of their rights upon admission to long-term care.
Resident and Family Concerns
The following section will outline, in no particular order, some examples of resident and family concerns.
a) Power Imbalance
The power imbalance between older adults and the staff or health care providers in congregate settings is one of the most significant factors contributing to an environment where older people are reluctant to complain and seek justice. Residents are “captives” of the home in which they live: that is, they cannot do without the help that is provided, have little or no say about who provides that care, and cannot leave and go elsewhere if they are unhappy with the care they receive. We heard from residents at our focus groups that they do not complain due to fear of retribution by staff members and concerns about eviction. Also, residents expressed a reluctance to “make a fuss” or “cause trouble.” Some residents feared they would be “evicted” from the retirement home or long-term care home if they did not comply with the “rules.” In our experience, older generations tend to be more deferential to authority figures while newer generations are less inclined to be so and they feel entitled to assert their rights. For instance, residents advised that their children often want to complain to outside parties or write demand letters, while their mothers or fathers do not want to “rock the boat.”
b) Family/Friend Involvement
Long-term care home residents advised us that they need to enlist the involvement of family or friends in their life to observe and liaise with staff, as well as to ensure compliance with the law. One resident told us that her questions and concerns go unanswered but the home will respond to her daughter’s e-mails. Family members explained that, in their opinion, the care of their loved ones is adequately provided only if they visit the home every day or on a regular basis.
c) Staff Attitudes
Residents and family members complained about paternalistic and infantilising attitudes of staff. A long-term care home resident who appeared to be quite competent advised us of a situation where she chose to do something that a staff member apparently felt was unsafe. Instead of speaking to her about it, one of her children was contacted about her “behaviour.” Another resident was told by staff that she was not allowed to push her husband in his wheelchair because she might harm herself. Instead of allowing these apparently competent residents to choose to do something which might have some risk attached, they were not given a choice and treated like children.
d) Privacy and Dignity
Many long-term care home residents felt that there was a lack of privacy and dignity conferred by service providers. For safety reasons, doors in residents’ rooms in long-term care homes have no locking mechanisms. Residents told us that staff members frequently failed to knock before entering their room or bathroom, even when the door was closed. While this may appear to be a minor infringement of one’s right to privacy, it does not foster positive relationships nor does it contribute to the facility feeling like a “home” environment. Statistics from the Ontario Health Quality Council show that over 20% of residents do not believe a facility feels like home to them.[97]
e) Rights Education
Both residents and families said they required education about their rights in congregate living. Examples abound of situations where residents had no information, or misinformation, about their rights. For instance, during one focus group, ACE was told by the administrator of a home that each resident must have a power of attorney in order to be admitted. Despite being advised that this was not legal, the administrator insisted that it must be done. There are no laws requiring powers of attorney for residents of either long-term care or retirement homes but it is not uncommon to encounter these requirements. While these documents may be helpful in many situations, there are many good reasons why a person should not have such legal documents in place. However, when administrators have these beliefs and insist on these documents, it is difficult for potential residents to disagree with them.
It was also noted that many residents and families did not feel properly prepared for the transition to either a retirement or long-term care home. Participants at our meetings indicated that residents were provided with a vast amount of information, including details about rights and complaint mechanisms, on the day of admission. Many residents and family members described this day as a “blur” and stated they did not retain any of the information provided to them on that day.
Residents and families acknowledged that they also needed to learn about their personal role as a resident, or a friend or family member of a resident, living in a congregate setting. One of the realities of congregate living is that it is a group environment where residents have different personalities – not everyone is going to get along with each other. Compromises will sometimes be necessary. For instance, residents sharing rooms in long-term care homes are placed in whatever room is available and have no choice about roommates.
f) Specialized Staff Training
Some family members felt that staff require more specialized training. They commented that while it would be beneficial to have increased levels of staffing, “more care doesn’t necessarily mean better care.” It was noted that the number of staff was not as important as having properly trained staff. Where there were poorly trained staff or a lack of proper staff supervision, it would not matter how many staff were available: they still would not provide the special care that the residents required.
g) Detention
It was widely reported that homes were restricting residents’ from going outside the long-term care home except in accordance with restrictive rules. While ACE has dealt with many of these types of cases, we were surprised at the pervasiveness of these rules. Almost every long-term care home’s Residents’ Council spoke of the fact that residents were not permitted to leave the home without an escort or family member. A social worker at one home confirmed that residents are presumed not capable to leave on their own unless proven otherwise. Long-term care homes are just that – homes, not prisons. There is nothing in law authorizing a long-term care home to prevent residents from leaving the home.[98] In fact, long-term care homes do not have any detention authority unless there is an immediate threat to the resident, at which time common law duties of restraint apply.[99] It is often assumed that if the resident is found incapable with respect to placement, this gives the long-term care home or substitute decision-maker authority to prevent the resident from leaving the facility. This is not true. If a person wants the authority to detain another person, one would have to go to court to obtain authority to do so. Most of these residents expressed a wish to be able to go to local stores or coffee shops without a family member or paying for an escort. Even when ACE advised residents that they were in fact permitted to leave, several residents did not believe us because it was contrary to common practice.
h) Barriers to Accessibility
Residents of long-term care homes and family members expressed concerns about the accessibility barriers affecting residents with physical disabilities. One resident felt that different rules and standards existed for residents with physical disabilities who require wheelchairs. Due to insufficient staffing to provide individual assistance, he is unable to get out of bed or use the bathroom as he sees fit. Instead, he must rely on staff and abide by their schedule. Another resident reported that she is not allowed out of her wheelchair during the day due to inadequate staffing levels. In one home, family members noted that the carpeting makes it difficult to push residents in their wheelchairs. At a different home, residents with wheelchairs have difficulties entering the public washrooms located near the common areas because there are no push buttons to open the doors.
i) Programming and Staffing Levels
Many residents said there are insufficient activities, programs and staffing levels at long-term care homes. Reported problems caused by a lack of staff include: prolonged waits or no response after ringing the call bell for assistance; use of diapers instead of assisting the resident to the washroom; minimal assistance at meals; and one staff member providing a service, such as transferring, where two persons are required. This leads to poor quality of care and unsafe conditions for residents.
j) Access to Physicians
Residents at long-term care homes were dissatisfied with their limited interaction with the physician providing care to them in the home. While residents are theoretically allowed to have their own physician provide care, the requirements placed on the physician by the home make this almost impossible, since most physicians in the community will not agree to these stipulations. The resident, therefore, must accept the services of the physician who is contracted by the home. Physicians typically visit the home once a week, although there may be more than one physician servicing a larger home. A number of residents noted that it often takes several weeks to see the doctor. At one home, residents said the doctor is reluctant to make referrals to specialists although they feel it may be appropriate. Staff are often reluctant to contact the physician in “off hours” despite the expectation that the home is always to have the services of a physician if required.
Similar concerns about access to physicians were also expressed by some retirement home residents.
k) Informed Consent
The failure of health practitioners to obtain informed consent for medical treatment was rampant in both retirement and long-term care homes. Residents and family members reiterated many of the same complaints that ACE has heard from its clients, such as doctors only providing minimal, if any, information about treatments and residents and/or their substitute decision-makers learning about prescribed medications after the fact. One family member commented that “doctors are God but long-term care doctors are higher than God.” At one of our consultations at a long-term care home, a resident who had lived at the home for a number of years asked us if she had the right to attend her own care conference. The home had invited her daughter but did not even inform the resident of the meeting despite the fact that she is competent to make her own treatment decisions.
Industry Concerns
Industry stakeholders spoke about the following constraints they experience with regards to respecting and upholding the rights of residents:
· Homes contend that they have insufficient resources. As a result, they cannot afford to hire as many staff or provide as much training as they would like;
· Industry stakeholders were forthright about the need to not only teach, but to emphasize, the importance of residents’ rights to administrators and senior management, as it is sometimes difficult for them to balance their corporate obligations with the rights of residents. A representative of one trade organization pointed out that some staff were trained in an era when paternalistic, not resident-centred, views were the norm. It was acknowledged that without the support and leadership of senior management, the current culture will not change;
· Retirement and long-term care homes consist of a diverse group of residents with unique needs, presenting challenges in ensuring that residents understand their rights;
· Residents and families have unrealistic expectations about congregate living;
· Homes are wary of liability and potential litigation. For instance, a stakeholder presented a fairly frequent scenario where a diabetic resident wants to eat birthday cake but the family forbids it and threatens to notify the government or sue if the resident is allowed to eat the cake;
· Fear of the Performance Improvement and Compliance Branch of the Ministry of Health and Long-Term Care; and
· Disputes with labour unions and grievances contribute to difficulties in resolving issues.
Conclusion
As is evident from the personal experiences of stakeholders, in addition to ACE’s work for the past 25 years, inherent in the current legal regime are barriers which prevent older adults residing in congregate settings from accessing justice. In applying the Law Commission of Ontario’s principled framework, one can analyze the barriers to determine why they impede the older adult’s access to justice.
A major impediment for older adults residing in congregate settings – ageism – is often the underlying cause or contributor to other barriers. ACE adopts the Law Commission of Ontario’s definition of ageism:
Ageism may be defined as any attitude, action or an institutional structure which subordinates a person or a group because of age, or any assignment of roles in society purely on the basis of age. Most often in our society, ageism reflects a prejudice against older persons, a negative bias toward the aging. As such, ageism is broader than stereotyping, although stereotyping may lead to and support ageism.[100]
A simple example of ageism is the automatic assumption that older people are incapable of making a decision due to their age. Although there is a presumption in the Health Care Consent Act that a person is capable, the onus is often on the older person to prove their capacity.[101] Another common example of ageism is the attitude that seniors must be “protected” by restricting their activities because it is in their “best interests.”
In retirement and long-term care home settings, as exemplified by the responses of residents at our focus groups, this ageist approach can include:
· Preventing capable residents from leaving the premises, even for short lengths of time, unless accompanied or if family members give consent;
· Requirements that all residents execute powers of attorney for property and personal care prior to admission, despite the fact that the senior may not want or need to execute such documents; and
· Discussing care issues with the resident’s family instead of the competent resident.
A second barrier for older adults is that while legislation which is more often applicable to older adults generally sets out a positive structure, it is either misapplied, usually in a paternalistic fashion, or simply ignored. Simply stated, the law is good but the practice is bad.
Due to a general misunderstanding of the law within the industry, principles of independence, participation, security and dignity are often not implemented. As already noted in detail, non-compliance with the law is rampant in the area of capacity, substitute decision-making and health care consent, disproportionately impacting older adults living in hospitals and long-term care homes. When health practitioners fail to obtain informed consent, older adults are not afforded dignity as they are not able to exercise personal autonomy in health care decision-making. Older adults are also precluded from actively participating in their treatment plans although the decisions are about their own bodies. Further, older adults are not afforded security of the person if health practitioners administer treatment without consent. According to the Supreme Court of Canada in Ciarlariello v. Schacter:
It should not be forgotten that every patient has a right to bodily integrity. This encompasses the right to determine what medical procedures will be accepted and the extent to which they will be accepted. Everyone has the right to decide what is to be done to one’s own body. This includes the right to be free from medical treatment to which the individual does not consent. This concept of individual autonomy is fundamental to the common law…[102]
To combat the phenomenon of “good law, bad practice,” it is important to encourage adherence with the law by increased education and training, as well as minor modifications to relevant legislation. ACE is of the opinion, however, that good laws should not be overhauled merely because there is resistance to comply. We envision law reform in these scenarios as including the entrenchment of special supports and additional protections for older adults (e.g., expansion of the Ombudsman’s jurisdiction and the provision of independent advocacy services for residents).
A third obstacle for older adult residents is the lack of awareness of legal rights on the part of both residents and service providers. While information about rights may be provided upon admission, it is often buried amongst the administrative paperwork. This, plus the fact that the day of admission is a difficult one for the resident and their family and friends, means that the information is often not digested. If older adults, their substitute decision-makers and family members do not have information about residents’ rights, their independence, security and dignity are jeopardized. Living in a group environment is inherently full of compromises; without the necessary knowledge about rights and expectations, the resident will not know what is and what is not acceptable. Lack of knowledge perpetuates the myth that older adults are helpless, as they do not know they can seek resolutions to their problems.
Fourth, the legal options available to older adults to have their rights respected are insufficient. Examples of ineffective legal mechanisms include:
· Complaints to self-regulated health professional Colleges;
· A civil justice regime that discourages older adults or their representatives from initiating lawsuits; and
· A Residents’ Bill of Rights for long-term care residents that is lacking in a tangible method of enforcement.
Due to the ineffectiveness of these mechanisms, the security of older adults is at risk because they are not able to receive even basic support from the available legal services.
A fifth barrier facing older residents is the power imbalance that exists between older adults and staff in congregate settings which often discourages residents from lodging a complaint and asserting their rights. This power imbalance is exacerbated because many service providers know there is limited and/or ineffective oversight in the current legal framework.
Another obstacle for older adults in congregate settings is limited resources. There is no dispute that the cost of living in congregate settings is expensive and there is competition for the allocation of scarce health care dollars. However, the government, local health integration networks and service providers must be cognizant of adequately providing for residents.
In our focus groups, residents complained about deficiencies in the level of programming and staffing. Due to the financial diversity of older adults, more affluent individuals are able to purchase extra care services and supports which permit them to enjoy a better quality of life than residents with fewer financial resources. While we recognize that there are certain things that a publicly-funded system can never provide, the system should be sufficient to provide adequate resources for all its residents.
Emerging from our research are several key priorities for law reform with regards to encouraging access to justice for older adults residing in congregate settings: education; independent and systemic advocacy; and increased oversight of congregate living environments. Each topic will be thoroughly examined in this report.
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