1. The independence, participation and security of older adults residing in congregate settings must be encouraged by providing them with the necessary information to understand their rights. As well, enhanced education must be delivered to staff and service providers across the province to ensure they: understand the rights of residents; respect those rights in their daily practice and facility policies; and disseminate the correct information to residents, family members and new staff.
2. An independent Health Care Commission responsible for the provision of education, individual advocacy and systemic advocacy in hospitals, long-term care homes and certain retirement homes[326] should be created. By having an independent third party assist residents with their questions and concerns, the Health Care Commission would promote the dignity and security of older adults. Individual advocacy would also foster the increased participation of older adults in their own decision-making about their care and accommodation. The education and advocacy functions of the Health Care Commission would also support respect for diversity by breaking down stereotypes and challenging discriminatory practices.
3. The jurisdiction of the provincial Ombudsman should be expanded to include hospitals, long-term care homes and certain retirement homes. ACE anticipates that the increased level of education and the assistance of advocates from the Health Care Commission would reduce the number of complaints to the Ombudsman. Nevertheless, oversight by the Ombudsman would provide an extra level of review for a population that is often otherwise marginalized.
4. The regulation of the retirement home industry is necessary to ensure that quality care is provided to residents, as well as creating effective mechanisms to enforce residents’ rights. Retirement homes that offer the same level of care services as long-term care homes should be regulated under the same legislation as long-term care homes, while all other retirement homes should be licensed in accordance with the levels of care services they make available. Included in this scheme would be a government-run complaints system to enforce the regulation of retirement homes.
5. The government needs to hear the voices of residents and their representatives to make certain that regulations and policies are meeting their needs. To accomplish this, the government should be required to form provincial advisory groups comprised of residents and their representatives and to meet with them on a regular basis.
6. Older adults must be afforded security of the person and be made aware of their legal rights in the event of findings of incapacity. The law governing capacity should be amended to require health practitioners to provide more detailed information on regulations to persons found incapable respecting treatment and admission to long-term care.
7. The transparency of the compliance and enforcement regime needs to be improved by strengthening the education, skill-sets and qualifications of compliance advisors. Detailed inspection reports should be made easily accessible to the public, by posting them on the internet and providing a central office from which hard copies can be obtained. Complainants should be provided with copies of the findings and reports of their own complaints.
8. To encourage meritorious litigation, the laws pertaining to damages in the civil system should be changed to permit actions without proving damages in the traditional context and allowing the court to award general damages.
Education
First and foremost, we consistently heard from all stakeholders that they lacked awareness of residents’ legal rights. Not only are these rights not known by the residents, their friends and family, but staff and management of the various congregate settings do not have a basic understanding of residents’ rights. As a result, many policies and practices in congregate settings may either be created without reference to the law or based on a misinterpretation of the law.
Without this awareness of residents’ rights by both seniors and service providers, residents are restricted in exercising their independence. The structure of congregate living settings often reinforces ageist stereotypes about older adults (e.g., all older adults in long-term care homes are sickly and incapable of making treatment decisions).
The lack of information about residents’ rights, coupled with policies that fail to reflect these rights, limits the opportunities of older adults to participate in a meaningful way at both an individual and group level. In turn, this affects the security of residents, as the environment in which they live may be overly restrictive. Although the principle of security includes an element of protection, that protection and care must be balanced, as overprotection may be abusive.
As previously discussed in this paper, Ontario has good law but bad practice. One way to combat this phenomenon is to equip residents with accurate and accessible information on a regular basis. Armed with this information, residents are in a better position to exercise their rights and force “good practice.”
We received several suggestions from stakeholders about ways in which to facilitate education and empower residents:
· Ensure hospital staff, especially discharge planners and social workers, are providing accurate information to older adults;
· Community Care Access Centres should be providing information about the rights and responsibilities of residents, substitute decision-makers and family members prior to admission to long-term care;
· Electronic resources, such as Youtube, should be utilized to provide information;
· Family Councils should take some responsibility for organizing information sessions about the rights and responsibilities of residents and family members;
· Standardized educational tools should be developed to save resources and to relay a consistent message;
· ACE should create more educational tools for residents and staff;
· Lobby law schools to offer elder law courses and expand their clinical programs to include elder law;
· Lawyers knowledgeable in the relevant areas of law should be retained to prepare and/or review educational tools;
· Information about the rights of older persons residing in hospitals should be posted in visible areas;
· Health professionals and health organizations should provide training in the area of residents’ rights; and
· The educational requirements contained in the Long-Term Care Homes Act, 2007 should be capitalized on. The Ministry of Health and Long-Term Care should develop specific educational programmes outlining the expectations in the area of training regarding residents’ rights.
ACE’s Recommendations
The importance of education cannot be overstated: information is power. The source of many of the problems encountered in congregate settings is poor education and the lack of accurate information.
The most important principle that needs to be conveyed to all stakeholders is the fact that seniors are people. Older adults are presumed to be capable of making decisions, and they have the right to make foolish decisions, just as people living outside a congregate setting do. ACE is of the opinion that many staff members and some families do not understand that older adults are allowed to take risks or make foolish decisions. Educational resources need to emphasize that residents’ rights are a two-way street: not only do they recognize the independence and autonomy of residents, but they protect staff from liability. For example, the fact that a capable resident is at risk of falling does not entitle staff to restrict the person from walking altogether. By resorting to unlawful actions to “protect” the resident, the staff violates the law.
ACE recommends the development of a standard curriculum, along with comprehensive training respecting residents’ rights, for residents, families and staff of long-term care homes. Residents’ rights information should be broadly interpreted to include information on related legal issues such as privacy rights, access to information, substitute decision-making and consent; it should not simply focus on long-term care home legal issues. The training should include segments on care issues that impact resident rights, such as dementia, mental capacity and care planning, as an understanding of this clinical information impacts the application of residents’ rights. Long-term care home licensees should be obligated to provide and make available both training to staff and information to residents and their families about residents’ rights pursuant to the Long-Term Care Homes Act, 2007.
We believe the Ministry of Health and Long-Term Care should develop and design standardized training tools to ensure consistency, although this should be done in collaboration with ACE, industry stakeholders, Residents’ Councils and Family Councils. This also has the benefit of not permitting any one player to selectively choose the information being relayed.
Education needs to be ongoing and held at times when individuals can properly process the information. Thus, there should be regular meetings provided by Residents’ Councils, Family Councils and/or advocates for residents and families. These meetings would be voluntary so individuals could attend as frequently, or infrequently, as they please.
Similar education programs should be developed for retirement home tenants and staff, focusing on retirement home tenancy rights and obligations. ACE recommends that retirement homes offering the same levels of care as long-term care homes be subject to the provisions of the Long-Term Care Homes Act, 2007 (see pages 102 to 106 for a detailed explanation about ACE’s proposal for the regulation of retirement homes) and, as such, the same educational programs as described above should be required. As ACE is also recommending provincial licensing of retirement homes that offer lesser levels of care services, similar education programs respecting tenants’ rights for residents, families and staff of retirement homes should be developed by the Ministry responsible for licensing of those retirement homes. This should be done in collaboration with ACE, the industry and representatives of retirement home tenants. Licensed landlords of such retirement homes should be obligated to provide and make available this training to staff and information to tenants pursuant to the legislation governing retirement homes.
Professionals, such as physicians and lawyers, also need to be better educated about the rights of residents as they are gate-keepers of information. Thus, ACE recommends that medical schools revisit their curriculum to include more information about the laws pertaining to consent to treatment. Law schools should be encouraged to offer courses on elder law and consider developing clinical programs. An example of such a program is the Center for Excellence in Elder Law at Stetson Law School in Florida, which offers opportunities for specialized courses and research projects for students who wish to focus their studies on elder law.[327] The Law Society of Upper Canada and the legal profession should also provide more opportunities for continuing legal education respecting elder law.
Given the prevalence of paternalism and negative stereotyping, ACE is supportive of a general media campaign to combat myths and raise awareness about issues affecting older adults. As the majority of people do not think about the rights of residents living in congregate settings until it is time for themselves or a friend or family member to move into such an environment, ACE does not believe a media strategy directed at the rights of residents would be practical at this point in time. Nevertheless, issues which pertain to both areas should be incorporated into a public education campaign (e.g., the right to give informed consent to treatment, the presumption of capacity and the right for people to make their own choices).
The Health Care Commission
Very often, people living in institutional settings are unable to speak for themselves. This may not be because they are mentally incapable of doing so, but rather, due to the circumstances in which they find themselves. For example, because of a medical condition, residents may rely heavily on their caregivers to assist in their activities of daily living. The resident may be afraid that if they speak up, they will lose their services or experience retaliation by the caregiver. In other instances, due to the isolation experienced in long-term care homes, residents may be unaware of their rights. Residents living in locked units are particularly vulnerable to potential injustices. The majority of residents in locked units rarely leave the unit: they eat their meals, complete their programming and see their doctors within the unit. Most residents in locked units do not have access to telephones and typically can only use the telephone at the nursing station with their permission. Thus, it is often very difficult, if not impossible, for these residents to seek outside assistance. Residents in both locked and unlocked units may accept questionable situations because they are unaware of alternatives or they feel powerless. In these instances, an advocate may be able to act on the person’s behalf to seek change and protect the person’s rights.
The concept of third party advocacy to assist individuals who may be vulnerable is not novel. In fact, the Ministry of Health and Long-Term Care itself recommended some form of third party advocacy for seniors in long-term care homes.[328] The Law Commission of Ontario’s preliminary consultation revealed that a number of organizations recommended that the Law Commission “examine the desirability and feasibility of some type of individual advocacy for older adults.”[329] For example, the Prevention of Senior Abuse Network – Simcoe County said: “Legislating the availability of Senior Advocates would alleviate some of the anxiety and help them navigate through often complex and intimidating systems.”[330] The Ontario Network for the Prevention of Elder Abuse stated:
In order to secure and assert the rights of older adults, the system should establish a regulatory regime outside the civil service that will have its own director and devoted entirely to problems of elderly people…This regulator will ensure that the checks and balances are adequate and they are effectively enforced in a manner that is timely and that the assets of older adults are protected.[331]
Other countries have also commented on the need for advocacy for older adults, including the Office of Fair Trading in Wales:
The experience of groups who are involved with advocacy is that older people find complaints procedures more accessible when an advocate is working on their behalf. Advocacy allows them to make their voice heard more easily and they can enjoy support through difficult situations they may not otherwise have had the confidence or ability to address. Advocacy can also prevent complaints from escalating by providing a source of mediation between the care home and resident, ultimately resolving issues more quickly to everyone’s benefit. By actively demonstrating that they promote and encourage the use of advocates by residents, care homes could develop an advantage over other homes less keen to do so.[332]
This section of the paper will define advocacy and explain the different types of advocacy before briefly discussing Ontario’s defunct Advocacy Commission. Finally, ACE will put forward its proposal to establish an independent Health Care Commission with health care advocates who will perform both individual and systemic advocacy.
What is Advocacy?
Advocacy is defined in the Oxford English Dictionary as “the function of an advocate; the work of advocating; pleading for or supporting.”[333] Advocacy has also been defined as “an activity which involves taking up the case of an individual or group of individuals as speaking on their behalf to ensure that their rights are respected and their needs are met.”[334]
Individual or instructed advocacy simply means acting on behalf of an individual. The advocate is instructed directly by the individual or the appropriate substitute if the person is incapable. Systemic advocacy is advocacy on behalf of a group of people with the same or similar interests and can include such activities as seeking changes to policies or legislation. Acting on behalf of an individual or group, in the best interests of those involved, when it is without instructions from anyone, is non-instructed advocacy.
The Advocacy Commission
In 1987, a government document known as the O’Sullivan Report concluded that advocacy was needed in Ontario. Two of its major findings were as follows:
The concept of “vulnerability” can create a need for advocacy as the vulnerable are often dependent on others which will leave them susceptible to abuse, neglect or abandonment. Institutionalization creates vulnerability by eroding a patient’s last resident’s rights to self determination and independence.[335]
The New Democratic Party government subsequently passed the Advocacy Act in 1992. In addition to increasing the number of mandatory rights advice situations to 29 (there are currently only eight situations), this legislation established a formal system of advocacy by creating an Advocacy Commission where employees would act as advocates for vulnerable people, either individually or collectively. The Advocacy Act was intended to cover an estimated 600,000 adult residents of Ontario who experienced either moderate or severe mental or physical disabilities and found it difficult, or were unable to, express or act on their wishes or to ascertain or exercise their rights.[336]
The Advocacy Commission was an independent body which administered the legislation. A majority of the members of the Commission were persons who either were, or had been, vulnerable. Selection of the members involved a complex community consultation process for nine of the members while the remaining four members were appointed directly by the Minister.[337] The advocates were Schedule III employees, meaning they had no direct links to the permanent civil service.[338]
Regrettably, the Advocacy Commission ultimately failed and the legislation was repealed by the succeeding Conservative government led by Mike Harris. It is important to review why the Advocacy Commission did not succeed so that ACE’s proposal does not duplicate their mistakes. Ernie Lightman and Uri Aviram studied the Advocacy Commission and arrived at the following conclusions about its failure:
We argue that the demise of the Advocacy Act in Ontario resulted in part from the government’s attempts to do too much. The coalition that initially promoted the law tried to achieve too much in the legislation, beyond the capacity of the social, organizational, professional and political environment to absorb it. We also suggest in this paper that the government acted too late. Even if certain aspects of the legislation might have had a chance of long-term survival in some form, the government was too late in starting the implementation process of the law. The administrative, bureaucratic, and political processes associated with the passage of the bill were cumbersome and even sloppy, to the point that the legislation was present through the government’s entire five-year term. Although the act received final reading in the legislature and royal assent in December 1992, it was not ultimately proclaimed until April 1995, only months before the next election, which the incumbents were certain to lose. As a result, the act never really had a chance to garner public support and show what it could do. The combined effect of “too much” and “too late” were more than a government that held limited popular support could accommodate within a deteriorating economic environment.[339]
The legislation was also criticized for its potentially intrusive nature. Advocates were permitted to enter private residences, on occasion, without a search warrant. The concept of uninstructed advocacy was controversial as it was unclear “who had the right to make what interpretations about the wishes of consumers who could not express themselves clearly.”[340]
After the repeal of the Advocacy Act, the Conservative government commented that it was minimizing the role of government in people’s lives and putting decision-making “back where it belongs, in the hands of individuals and their families.”[341] Evidently, the Harris government was excluding those residents who were unable to self-advocate or did not have any friends or families to advocate on their behalf from having a role to play.
Stakeholder Feedback
Throughout our focus groups with residents and families of long-term care homes, ACE consistently heard that some form of third-party advocacy where advocates went directly to the homes to meet with residents would be beneficial. Many residents stated they were afraid to voice their concerns for fear of retribution or being labelled a troublemaker. A number of residents complained that their concerns were ignored until a family member became involved. Several family members explained that they were only able to notice and prevent problems if they were at the home on a daily or regular basis.
One Family Council proposed that each home be required to appoint a Rights Officer who would be responsible for: (1) ensuring that the home has policies and procedures which complied with the legislation regarding the Residents’ Bill of Rights; (2) ensuring that the Bill of Rights was promoted, distributed and carried out; (3) educating staff about the Bill of Rights; and (4) answering questions about the Bill of Rights from residents, staff, families and persons of importance to the resident. The Family Council also supported the appointment of a Seniors’ Ombudsman.
As many long-term care home residents moved directly to a long-term care home from hospital, or previously stayed in a rehabilitation unit or other hospital-based unit, several stakeholders commented about problems experienced by older adults in hospitals. For example, patients are often not provided with accurate information about their health care options (e.g., first available bed policies). Further, it is very difficult for patients to navigate hospital rules and policies regarding admission to specialized units, such as complex continuing care and rehabilitation. Although social workers or hospital patient representatives are supposed to assist patients, they are often overworked or constrained by hospital administrations which attempt to limit the numbers of patients utilizing expensive health care beds to meet budget limitations. Social workers and hospital patient representatives are also paid employees of the hospitals and as such, often feel obligated to follow and enforce hospital policy or risk jeopardizing their employment, even if they believe that the policies conflict with patients’ rights.
While the seniors groups with whom we consulted were supportive of independent advocates, industry stakeholders had some reservations about this approach. First, they disliked the terms “advocate” or “advocacy” because they felt it had an adversarial or confrontational connotation. Second, they felt that if advocates only visited homes periodically, they would not have a comprehensive understanding of the situation in the home but merely a snapshot. Third, they were of the opinion that advocacy services would duplicate the new compliance regime under the Long-Term Care Homes Act, where inspectors will be expected to speak directly with residents and families. Fourth, they felt that the staff at long-term care homes needed their own advocate.
ACE’s Recommendation: The Health Care Commission
ACE believes that the provincial government should establish an independent Health Care Commission to support patients in hospitals, residents of long-term care homes and residents of licensed retirement homes regulated under the long-term care home legislation.[342] ACE also feels that the Health Care Commission’s mandate should include access to home care services in the community but it is beyond the scope of this paper to discuss this issue. The Health Care Commission would be responsible for rights education, independent advocacy and systemic advocacy in health care settings.
In researching the various jurisdictions, we did not find one which had an overarching Health Care Commission with the responsibilities which we are proposing. Some models did provide support but we suggest that they do not go far enough.
British Columbia has the Office of the Assisted Living Registrar. This body takes complaints from residents of assisted living facilities but it has no role in complaints about community care facilities. The Registrar is not an advocate for residents but an educator, mediator and licensor of assisted living facilities. The fact that one of its mandates is to “mediate” issues is contrary to our proposal for the Health Care Commission.
Alberta has the Protection for Persons in Care Act but it is also limited. It does not investigate any complaints from private operators nor does it provide advocacy services. Investigation reports are submitted to Alberta Seniors and Community Supports who makes a determination about what action, if any, will be taken. Sanctions can only be levied in those cases involving “intent” to abuse persons in care, thereby omitting situations where abuse, although not intentional, should not have occurred. Alberta also has a Health Facilities Review Committee which has an extremely narrow mandate. Complaints are often not thoroughly reviewed due to issues of consent. Moreover, any type of systemic investigation by the Health Facilities Review Committee appears to be prohibited.
Wales is the only jurisdiction which has an Older Person’s Commissioner. This office is independent of the Crown and has a broad mandate to ensure the protection of vulnerable older adults. While the Commissioner has investigative authority and can review public bodies of all types of determine whether they meet the needs of older persons, her involvement in individual claims is limited to cases of general relevance, even if there is no other body which can deal with the problem.
Finally, New South Wales in Australia has several bodies which deal with health care complaints. First, the Health Care Complaints Commission, an independent body, can accept and investigate complaints about any health service provider in the state. Second, the Aged Care Complaints Investigation Scheme has authority to investigate complaints and direct the service provider to take action. Unfortunately, as with the complaints investigation scheme in Ontario, the substantiation of complaints is difficult without indisputable evidence. A third investigative body, called the Aged Care Commissioner, was established in response to complaints about the Aged Care Complaints Investigation Scheme. The Commissioner may review the conduct of the Aged Care Complaints Investigation Scheme and examine issues of her own initiative. However, the limited scope and non-binding authority of this body is less than ideal.
Each state in Australia has an Aged Advocacy Agency which provides free and confidential advocacy services to older adults. Further, a community visitor’s scheme provides funding for visits to residents living in care, which provides support and a watchful eye for those who may not have any other support.
In the United States, each state has a Long-Term Care Ombudsman. We suggest that this system is more similar to an advocacy model than the classical Ombudsman which we have in Canada. The efficacy of each Ombudsman program differs from state to state and most programs heavily rely on volunteers.
Looking at these models from other jurisdictions, while each has its interesting aspects, none completely meets the requirements as identified in this project.
ACE does not support the creation of a specialized Seniors’ Advocate. While some jurisdictions, such as Wales and Australia, have limited their services to older adults, we do not believe this is the correct approach. We discourage a framework based on the perception that older adults lack capacity and need protection. Simply stated, older adults are people. ACE believes that all people navigating the health care system could benefit from the services of an advocate, regardless of age. We want to move away from ageist stereotyping towards a rights-based approach. Moreover, as there is no generally accepted definition of an older person, younger individuals residing in long-term care homes or in hospital would be precluded from obtaining assistance from a Seniors’ Advocate. For example, while many of the issues experienced in long-term care will be almost exclusively faced by elderly persons, this is not universal. The minimum age for residents in long-term care homes can be as young as 18 years of age, and it would not make sense to restrict their access to advocates on this artificial basis.[343] Given the lack of supportive housing, many retirement homes have also become home to younger disabled persons who should also be able to access this service.
ACE envisions a structure for the Health Care Commission similar to the Office of the Provincial Advocate for Children and Youth. According to the Provincial Advocate for Children and Youth Act, the Provincial Advocate is an independent officer of the Legislature whose purpose is to: provide an independent voice for children and youth; encourage communication between children and families and service providers; and educate children, youth and their caregivers regarding the rights of children.[344] Advocates receive and respond to concerns from children, youth and families who are seeking or receiving services under the Education Act and the Child and Family Services Act.[345] The Provincial Advocate is also able to: identify systemic problems involving children; conduct reviews and provide education and advice on the issue of advocacy and the rights of children.[346] The Provincial Advocate is obligated to present a written report about the office’s activities and finances, as well as whatever he or she considers appropriate, to the Speaker of the Legislative Assembly on an annual basis.[347]
The Health Care Commission should also be an independent office of the Legislature to reduce any conflicts of interest. The organization would be lead by a Provincial Health Care Advocate who has significant experience in the areas of health and social justice and who does not have any financial affiliations with the hospital, long-term care and retirement home industries. The Provincial Health Care Advocate would be responsible for the oversight of health care advocates working in hospitals, long-term care homes and retirement homes providing a particular level of care. Based on the information provided by the individual advocates, the Provincial Health Care Advocate would perform systemic advocacy. Finally, the Provincial Health Care Advocate would publish annual reports for the Speaker of the Legislative Assembly, in addition to any other reports for the public that he or she felt was necessary.
Due to the fact that hospital patients and long-term care residents often have limited mobility or are unable to leave the facility, ACE believes it is imperative that advocacy services be provided directly to individuals where they are situated. ACE appreciates that it would not be economically feasible to have full-time Health Care Advocates in each hospital, licensed retirement home providing a particular level of care or long-term care home located across the province. We suggest that an advocate be assigned a geographic area where they are responsible for a certain number of smaller hospitals and homes. The advocate would then visit the hospital or home on a regular basis (e.g., biweekly, monthly or as needed due to the circumstances of residents). A full-time advocate should be assigned to larger hospitals due to the size and constant turnover of patients.
In terms of the qualifications of Health Care Advocates, they should possess a university degree, in addition to other skills, such as experience in social justice, advocacy, conflict resolution and the advancement of human rights. It is not intended that advocates be lawyers, although lawyers are not precluded from being advocates. It will be integral, however, for the Health Care Commission to retain legal counsel to provide necessary legal advice to the organization. Further, the advocates must be employees, not volunteers. While many jurisdictions use volunteers for this purpose, we do not believe this is appropriate for a number of reasons. First, the dedication and retention of volunteers is difficult to maintain. Many volunteers start with great enthusiasm but it later fades. Second, volunteers cannot always be relied upon to perform tasks on an ongoing basis as other obligations in their lives may take priority. Finally, individuals providing advocacy services should receive appropriate remuneration commensurate with the importance of their work. ACE wants advocates to be well-educated in their area of expertise, who are dependable and can bring a wealth of knowledge and experience to their position. We believe this can only occur with paid advocates.
A key component of the work of the advocates would be education. For instance, advocates could provide information sessions for residents, families, staff and management, in addition to working with Residents’ and Family Councils to design and disseminate information.
It is important to draw attention to what ACE perceives as the main principles underlying individual advocacy:
· The advocate should respect the individual as an autonomous being;
· The relationship between an advocate and a client is voluntary and consensual;
· The substitution of the advocate’s own view with the “best interests” of the client in unacceptable;
· The advocate should empower the person being assisted and support self-advocacy;
· The advocate should follow the instructions of the person being assisted. It is not the role of the advocate to impose the advocate’s own values or goals upon the client;
· The advocate should try to resolve issues in the least adversarial and intrusive manner possible by attempting to be non-adversarial in dealing with other parties and using the least intrusive methods possible to resolve issues; and
· The advocate must maintain confidentiality.
The advocate should assume that the person is competent to give instructions unless the advocate has reason to believe otherwise. However, in some cases, a person may be incapable of giving instructions. Where a person is not capable of giving instructions on the issue at hand, the advocate may take instructions from the substitute-decision maker. The advocate must always remember that they are still acting on behalf of the client, not the substitute decision-maker. Where the advocate suspects that the instructions given by the substitute decision-maker are not what the client would have wanted, the advocate must weigh the matter carefully. Where they believe the substitute decision-maker is not acting appropriately, the advocate should stop following the substitute decision-maker’s instructions.
The issue of non-instructed advocacy tends to be contentious because the advocate might substitute their subjective beliefs for those of the resident or intervene in a situation without a full understanding of the individual’s unique circumstances and care needs. Alternatively, unbeknownst to the health advocate, there may be a reasonable explanation as to why a resident is being treated in a particular way.
Having said that, non-verbal and incapable residents are the people who are at the greatest risk of having their rights trampled. The work of the local Health Care Advocates with this population would be systemic in nature to avoid the pitfalls associated with traditional non-instructed advocacy. If advocates became aware of systemic problems, they would collect statistics and provide information to the Provincial Health Care Advocate who would then publish reports to expose these issues. If the advocate determines that an incapable resident requires immediate assistance, they could make referrals to the appropriate services, such as:
· Invoking section 25(1) of the Nursing Homes Act which requires non-residents who have reasonable grounds to suspect that a resident has suffered or may suffer harm as a result of unlawful conduct, improper or incompetent treatment or care or neglect, to immediately report the suspicion and the information upon which it is based to the Director at the Ministry of Health and Long-Term Care;
· Calling the ACTION Line and/or a compliance advisor;
· Contacting the Office of the Public Guardian and Trustee as sections 27 and 62 of the Substitute Decisions Act mandates the Public Guardian and Trustee to investigate allegations that persons incapable of managing their property or personal care are experiencing or may experience serious adverse effects; and
· Notifying the police.
Opponents of the Health Care Commission in long-term care homes might argue that it is replicating the work of the Ontario Health Quality Council (which will soon be reporting on the quality of care in individual homes). However, the work of Health Care Commission can be differentiated because it is providing direct advocacy to individual complainants while the Ontario Health Quality Council is studying the quality of the entire long-term care home sector.
Others may contend that a Health Care Commission would duplicate the Office of the Long-Term Care Homes Resident and Family Adviser. Section 37 of the Long-Term Care Homes Act, 2007 says the Ministry “may” establish such an Office to: assist and provide information to residents, families and others; advise the Minister; and other duties as assigned or stipulated in the regulations. To date, very little is known about this Office. The government, to our knowledge, has not released any information with respect to its plans for the Office. In fact, the government is not even required to establish such an entity, as the wording of the statute is permissive, not mandatory. Even if the Ministry did establish this Office, ACE stresses that its purpose is not to provide advocacy. Further, it is not independent as it exists at the pleasure of the Minister, who could cease its operations if he or she felt threatened by the Office.
It might be argued by critics of the Health Care Commission that such an entity is an attempt to revive the Advocacy Commission. ACE contends that the Health Care Commission has a narrower mandate, focusing on providing advocacy services to those individuals who are interacting with the health care system. The Advocacy Commission, in contrast, was not limited to health care but had the authority to help any “individual vulnerable persons express and act on their wishes, ascertain and exercise their rights, speak on their own behalf, engage in mutual aid and form organizations to advance their interests.”[348]
Industry stakeholders claim that a Health Care Commission would be unnecessary due to the transformed compliance regime under the Long-Term Care Homes Act, 2007. ACE disagrees because the new system is not about individual or systemic advocacy but ensuring compliance with the legislation. During our focus groups, residents and families continued to complain about a lack of knowledge about their rights and their inability to have their rights enforced. While we agree that the new legislation contains more rights, it still lacks a mechanism for residents and their families to have these rights enforced. This is where the Health Care Commission would play a vital role in assisting people in ensuring these rights are protected.
Although some stakeholders disliked the moniker “advocate,” we feel it is appropriate because it accurately reflects the nature of the work. Suggested titles, such as “communicator” or “representative,” do not adequately express the significance of the health care advocate’s role.
ACE’s recommendation to create a Health Care Commission is consistent with a principled framework for the law as it affects older adults. Advocacy is crucial to the dignity of residents living in congregate settings as it affirms their importance as human beings while recognizing that they may need some assistance in realizing their rights. It promotes participation by allowing older adults to be consulted by Health Care Advocates on issues affecting them on an individual level. One of the goals of the Health Care Commission is to give seniors the necessary tools to assert their rights and enhance their capacity for independence. Respect for diversity is also fostered by advocacy as individual advocacy can be tailored to meet the unique needs of the resident in resolving their concerns without taking a “one size fits all approach.”
Ombudsman
Various jurisdictions around the world authorize an Ombudsman, or comparable body, to be an office of last resort respecting complaints in hospitals and long-term care homes. The Ombudsmen of several Canadian provinces have such authority while the Welsh have an Older People’s Commissioner for Wales and the Americans have a Long-Term Care Ombudsman Program.
The Role of an Ombudsman
According to the Forum of Canadian Ombudsman:
An ombudsman is an independent, objective investigator of people’s complaints against government agencies and other organizations, both public and private sectors. After a fair, thorough review, the ombudsman decides if the complaint is justified and makes recommendations to the organization in order to resolve the problem.[349]
The Forum of Canadian Ombudsman identifies the two most common types of ombudsman in Canada as legislative or classical ombudsman (established by statute and who can report findings and recommendations to ministers or the legislature) and executive ombudsman (able to report only to the head of the organization whom they investigate, such as government departments or businesses).[350] The ensuing discussion will be limited to legislative ombudsmen.
Ombudsmen are generally an office of last resort after all other options have been exhausted. According to one author, ombudsmen generally have the following powers and protections:
· Unimpeded access to information;
· Protection of the confidentiality of the proceedings in order to facilitate co-operation throughout the investigation;
· Protection against the use of their evidence in subsequent proceedings;
· Immunity from prosecution for anything done in good faith while exercising their duties; and
· The right to require information or documents, as well as examine any relevant person on oath.[351]
Proponents of ombudsmen argue they are successful because:
· Their independence is unquestioned;
· While following the rules of natural justice, the procedures of the ombudsmen are informal, inquisitorial and non-adversarial;
· Legal representation is not necessary; and
· The service provided is free and (unlike the court system) there is no risk to the complainant of having to pay the other party’s costs if the complaint is not upheld.[352]
In Ontario, and the majority of other jurisdictions studied in this report, the Ombudsman does not have the power to enforce compliance with any recommendations, so persuasion must be utilized. In the words of Andre Marin, Ontario’s Ombudsman:
The reality of our work is that, academically, we are paper tigers. On paper, most ombudsmen have no power. I can’t punish anyone for wrongdoing or force anyone to accept my recommendations. My Office’s only power is that of moral suasion. To exercise that power, two things are essential: I have to be right, and I have to have the public on my side.[353]
Common criticisms levied against ombudsmen include the following:
· The operation of an ombudsman’s office is expensive;
· Vulnerability to marginalization, under-funding and over-management by the powers from which it is meant to protect the citizen;
· Their power and influence is contingent upon the personality of the ombudsman;
· They selectively choose the systemic issues to pursue; and
· Their existence creates an added level of bureaucracy.
The Jurisdiction of Ombudsmen in Canada
Ontario is the only province in Canada where the provincial Ombudsman does not have jurisdiction over any aspect of the health care sector. With respect to long-term care homes, the Ombudsman has jurisdiction in five other provinces (Alberta, Nova Scotia, Newfoundland, Yukon and Quebec).[354] It should be noted that the Ombudsman of British Columbia has jurisdiction over long-term care residences if they are owned by the local health authority.[355]
In the provinces examined for the purposes of this report, with the exception of British Columbia, residents living in facilities similar to Ontario’s retirement homes do not have access to an ombudsman.
A recent attempt in June 2008 to expand the jurisdiction of the Ontario Ombudsman to include both hospitals and long-term care homes was Bill 89, the Ombudsman Amendment Act. To date, it has not passed first reading.[356] Bill 102, the Seniors’ Ombudsman Act, was introduced in September 2008. As the title suggests, it proposes to create a separate Ombudsman to consider seniors’ complaints. It passed second reading and was referred to the Standing Committee on General Government.[357]
ACE’s Recommendation: Mandate Modernization
While some consultation participants were opposed to the involvement of the Ombudsman, the majority favoured increasing the jurisdiction of the Ombudsman to include both hospitals and long-term care in Ontario.
ACE supports the Ombudsman having authority over these spheres of health care. The lack of an Ombudsman with authority in this billion dollar sector is, in our opinion, a hole which must be filled. Oversight by the Ombudsman serves to strengthen the independence, security and dignity of individuals if they feel they have been improperly treated by institutions which receive public money. The Ombudsman can help promote independence by ensuring programs and supports are being properly delivered. In terms of security, oversight by the Ombudsman provides an extra layer of protection from possible abuse and exploitation. With regards to dignity, the Ombudsman would serve to remind service providers that they must treat all residents fairly and with respect.
The role of the Ombudsman in Ontario should differ from the Long-Term Care Ombudsman Program in the United States. Generally, the Americans utilize a model where the Ombudsman is not an office of last resort but more proactive and akin to an advocacy program.
The Ombudsman should also have jurisdiction over and be able to review the work of the proposed Health Care Commission. As the role of the advocates at the Health Care Commission is very different than the Ombudsman, there would not be a duplication of work.
In line with our arguments against a Seniors’ Advocate, we feel that the creation of a separate Seniors’ Ombudsman is paternalistic. Further, it would be an unnecessary expense to establish another Ombudsman’s office when the structure already exists and is well-developed.
In order to be truly accessible, ACE also suggests that the Ombudsman modify its procedural rules to permit complaints to be accepted by telephone. Currently, the Ombudsman requires complaints to be provided either in writing (via regular mail or email) or in-person.[358] Hospital patients and long-term care residents would often have difficulties writing out a complaint or have limited mobility to attend an in-person meeting.
Regulation of Retirement Homes
The Problems Inherent to Self-Regulation
The quality of care in retirement homes cannot be guaranteed under the current model of self-regulation. A commonly recognized definition of self-regulation is “a process whereby an organized group regulates the behaviour of its members.”[359] As compared to command and control regulation, self-regulation should offer “greater speed, flexibility, sensitivity to market conditions, efficiency and less government intervention.”[360] The rationale for this statement is that the regulation will respond to the individual needs and circumstances of the industry because experts within industry would develop the necessary standards. However, critics of self-regulation say it does not work in practice. They claim “self-regulatory standards are usually weak, enforcement is ineffective and punishment is secret and mild.”[361] A strong body of cross-jurisdictional evidence indicates that the bulk of self-regulatory regimes are primarily motivated by the fear of government regulation. Thus, as argued by Gunningham and Sinclair, “it seems unlikely that they would perform well in the absence of continuing government oversight and the threat of direct intervention in the event of self-regulatory failure.”[362]
In Ontario’s retirement homes, there is little or no oversight of care services because there are no regulated standards. There are no mandatory inspections from an appropriate third party, like the Ministry of Health and Long-Term Care, who would be able to require compliance with set standards. While some homes are accredited by Accreditation Canada, this is a voluntary process and the organization has no authority to require compliance with its standards.
Although “nursing” care may be offered by the retirement home, it is up to the individual retirement home operator to decide whether this care will be provided by or under the supervision of a regulated health professional; it is perfectly legal to provide what is often advertised as “nursing” care by unregulated, unsupervised workers.
While ACE is definitely not espousing the opinion that all of the residents at retirement homes are vulnerable, many are. Self-regulation requires that the residents must be comfortable complaining and that they have the wherewithal to do so. Unfortunately, this ability is not universal. Residents may not have access to the appropriate information, such as the special rules for giving notice to end a tenancy in care homes. Even those who do know their rights are afraid to ask that they be enforced because they may experience retaliation.
In our view, the largest problem is that some retirement homes are operating, in effect, as “bootleg” long-term care homes: they are offering the same high levels of care as long-term care homes but without any of the rules or accountability that the Ministry of Health and Long-Term Care enforces in the long-term care system through detailed legislation, regulation, policies and enforcement mechanisms. Some retirement homes have locked units and use restraints on tenants, without providing any of the rights protection or other safeguards provided to residents of long-term care homes. This is a double standard, and it fails to ensure the safety and protection of retirement home tenants. Given that the retirement home sector is providing more and more care to vulnerable adults, these concerns cannot be ignored.
In short, there is a clear need for a comprehensive regulatory scheme for retirement homes so that all seniors can live in environments that promote their independence to the maximum extent possible, while also ensuring their safety and protecting their rights.
Ontario Seniors’ Secretariat Consultation
In 2007, the Ontario Seniors Secretariat released a Consultation Document proposing a “third-party regulatory model” for retirement homes.[363] Under this model, the government would create an agency that would develop standards and monitor its member organizations to ensure compliance with these standards. The government itself would not be responsible for creating any minimum standards, conducting inspections or penalizing non-compliance. This is the type of regulatory body the government has set up for participants in industries like travel agencies, real estate agencies and motor vehicle dealerships.
Over 800 participants attended the consultation sessions organized by the Ontario Seniors’ Secretariat regarding the regulation of the retirement home industry while over 250 written responses were submitted.[364] The following excerpt summarizes the written comments received by the Secretariat (and which was very similar to the feedback received at the consultation sessions):
Although all categories of respondents agreed that the retirement home sector should be regulated (including the vast majority of operators), there was little agreement on the specific features that could be included in a definition of a retirement home (such as size and care services). There was widespread agreement about which administrative, resident care, food services and environment areas should be covered by standards. While the enforcement activities of a monitoring entity were generally agreed by all respondents, there was disagreement about the enforcement body. While the majority of respondents felt that a third party agency was appropriate, a fairly significant number felt that enforcement was a government responsibility.[365]
ACE believes that the third-party regulatory model is not an acceptable model to apply to an ongoing relationship of providing accommodation and care to members of a vulnerable consumer group.
ACE’s Recommendation: Licensed Regulation of Retirement Homes
ACE proposes a government-operated licensing system with grades (or classes) of licence that a home would have to earn if it wished to provide certain classes of service. Consumers would then be aware of what services they can expect in any particular home, and could be assured that such services meet agreed-upon standards for safety, care and quality of service.
As a general outline, for example, the basic class of licence could be granted to homes demonstrating that they can meet agreed-upon standards concerning meals and nutrition, linen service and programming for tenants. An intermediate class of license could be granted to homes that can demonstrate competence in all of the basic features, and also be able to meet agreed-upon standards concerning services like medication administration, assistance with activities of daily living, provision of some nursing care and assistance in transferring residents from bed to chair. A holder of the highest level of license would have to prove competence in all the items mentioned above, and would be required to demonstrate that it could meet agreed-upon standards of care for frail persons including those with mid to late-stage dementia. The highest level of licence would be subject to the Long-Term Care Homes Act, 2007 and only the lower levels of licences would be exempt under section 95 of this statute. Section 95(1) stipulates that only persons with licenses are permitted to operate “residential premises for persons requiring nursing care or in which nursing care is provided to two or more unrelated persons.” Section 95(2)(b) goes on to say that section 95(1) does not apply to “other premises provided for in the regulations.”
With this type of graded licensing system, consumers would know in advance what levels of care or assistance they are entitled to expect, and what standards they can expect their licensee to meet. In tandem with a meaningful system of complaint resolution, which would have to be developed, this type of regulatory model would provide an important level of consumer protection in an industry where consumers can be very vulnerable. Further, retirement home operators would be able to decide what level of licence to seek, according to the needs they perceive in the market. This system would allow the market to respond to the needs of changing demographics, help support seniors who wish to “age in place” and preserve freedom of choice for consumers.
Outcomes such as skin integrity (including avoiding and treating bedsores) and continence care are no less important for a person in a retirement home than they are for someone in long-term care. At these high care levels, it must be recognized that the services being provided are health care services, and they must be regulated as such. Retirement homes providing such care should be subject to the same inspection and compliance regime as the long-term care home system. The same Ministry of Health and Long-Term Care compliance advisors should be responsible for ensuring compliance by operators licensed to provide high levels of care. For the lower tiers of licence, a system of inspections and administrative orders should be implemented. This administrative compliance system could be modeled on other legislated inspection models such as that found in the Fire Protection and Prevention Act, 1997.
Further, when the services being provided are health care services, it must be recognized that retirement homes are health facilities. It is at least arguable that certain high-level care services being provided within retirement homes fit within the definition of “home care services” as found in the regulation to the Health Insurance Act.[366] ACE sees no principled reason why such services should not be funded as insured extended care services under the Health Insurance Act. The failure to fund such services leads to the clear creation of two-tiered health care in Ontario. Retirement homes holding the highest level of license should be eligible for the same type of health funding as long-term care homes so that the residents have public health coverage.
By submitting that retirement homes could qualify for licences to provide health care services for persons with high health care needs, ACE should not be taken to support a two-tiered health care system. In such a system, those who can afford to purchase private care can do so, while those who cannot afford private care rely on the publicly-funded health care system. Our proposal should be understood as proposing that if the same health care services are provided both in the retirement home setting and in long-term care homes, then persons contracting for high-level care services in the retirement home context should be protected by the same standards and expectations of care providers in the long-term care home system. Holders of the highest level licence should be subject to the same regulatory scheme as provided in the Long-Term Care Homes Act, 2007. Please note that ACE is not campaigning for the repeal of the Residential Tenancies Act and its protections for residents. Instead, we believe licensing requirements should be added to the current legislation or, if new legislation is created, it should incorporate the tenancy protections.
It has been said that it may not be reasonable to expect small and large homes to achieve the same regulatory standards. In this context, one possibility would be to consider the model found in the Accessibility for Ontarians with Disabilities Act[367] whereby standards may be slightly different, or rolled out along different timelines, for different sizes of organizationon when it is appropriate to do so. All care home tenants should receive equal benefit and protection of any regulatory structure. The suggestion is made in order to draw attention to other legislated approaches to standard-setting in organizations of vastly different sizes.
It is important to ensure that the implementation of a regulatory system is not simply lip service. For example, in Newfoundland and Labrador, the sector is heavily regulated. However, a 2005 audit by the provincial Auditor General revealed that monitoring was not taking place, being held, standards were not being met and it was questionable whether residents were receiving a consistent and adequate level of care.[368] Models in other jurisdictions have shown similar weaknesses. British Columbia’s Office of the Assisted Living Registrar licenses, inspects and tries to resolve disputes, yet it is limited in its authority to look at care and other non-tenancy issues.
Advisory Councils
Advisory councils are created for the purpose of offering guidance and support to the government. These groups are usually composed of people who are in some way familiar with the relevant issues.
In Western Australia, the Minister for Health established the Western Australia Aged Care Advisory Council pursuant to the Health Legislation Administration Act 1984.[369] The Council was set up to provide ongoing advice to government on the health and related aged care needs of older people in Western Australia and to oversee a system-wide, whole-of-sector approach to the planning and provision of State programs and services. The Council provides an important linkage between the state government and aged care providers and consumers. The members of the Council are chosen by the Minister as he or she sees fit. Generally, members are selected to provide a broad representation of key health and aged care interest groups including health consumers, residents of rural and remote areas, geriatric and rehabilitation clinicians, health management, peak industry bodies and relevant government departments.
At present, there are at least a few advisory councils pertaining to seniors’ issues across Canada. In Alberta, the Seniors Advisory Council was created by the Seniors Advisory Council for Alberta Act to, among other things, advise, report and make recommendations to the government on matters relating to seniors in Alberta.[370] The National Seniors Council was established to advise the Government of Canada on all matters related to the quality of life of seniors. According to its website, the National Seniors Council “delivers well-balanced advice, taking into account the views of experts, seniors, organizations and groups that provide seniors programs and services, provincial/territorial advisory bodies on seniors, and other relevant stakeholders and interested parties.”[371]
None of these councils require members to be older adults. In contrast, the Governor’s Council on Aging in Missouri, which investigates and advises the Governor on quality of life issues for older adults, specifies that half of its 12 members must be over 60 years of age.[372]
There appears to be a trend within disability legislation to require the involvement of persons with disabilities. For instance, a majority of the member of the Accessibility Standards Advisory Council, pursuant to the Accessibility for Ontarians with Disabilities Act, must be persons with disabilities.[373] This reflects the notion that the best candidates to offer advice on issues that face a unique group of people are members of that group, who can use their personal experience to help resolve those issues.
Generally, stakeholders with whom we consulted felt that advisory councils whose membership includes residents of congregate settings are a good idea. One seniors’ group commented that advisory councils need a requirement that their work be made public and “not buried.”
Critics of advisory councils claim that members are often hand-picked, not for their skills or expertise, but political opinions or malleability. Advisory councils are also accused of being mere “window-dressing,” resulting in tokenism and creating a false appearance of inclusive practices.
ACE’s Recommendation: Resident Representation
In order for government to hear the voices of residents directly, as opposed to being filtered by representatives, ACE supports the use of advisory councils whose composition includes residents of congregate settings. Residents should be consulted as they are experts on the issues unique to congregate settings. Participation is one of the principles adopted by the Law Commission of Ontario as the basis for its approach to the law as it affects older adults. An “important aspect of participation is the right of older adults to be meaningfully consulted on issues that affect them, whether at the individual or the group level.”[374]
Although there are statutory provisions in the current and future legislation permitting Residents’ Councils in long-term care homes to report concerns or recommendations to the Minister of Health and Long-Term Care, the onus should not be on residents to navigate a bureaucratic regime to put forward their ideas to the government. Even if residents were able to get their opinions to the Minister, there is no obligation for the Minister to respond or engage with the Residents Council.
ACE proposes that the relevant legislation be amended to include a requirement for the Ministry of Health and Long-Term Care to strike advisory councils of seniors’ stakeholders whose membership includes a significant percentage of older adults living in congregate settings across the province. Their role would be to provide information and feedback about issues impacting their daily lives, as well as policies and legislation respecting their living environments. The councils would meet at least annually with the Minister. The costs associated with travel (including the services of a caregiver, if necessary) would be paid by the government. One method of choosing members for advisory councils would be to choose members from existing Residents’ Councils, taking into the consideration the need for diversity.
Due to the high number of residents in long-term care who are lacking capacity, family representatives should also be members of the advisory council. There should be an equal number of residents and family members.
While there are some possible disadvantages associated with advisory councils, ACE believes they are far outweighed by the advantages.
Informed Consent
Earlier in this report, we highlighted the serious problems associated with antipsychotics, the misapplication of consent laws and the lack of rights information provided to residents or their substitute decision-makers.
Under the regulations to the Mental Health Act, patients in psychiatric facilities must be provided with rights advice if they are found to be incapable with regards to treatment.[375] Rights advice is a process whereby an individual is informed of their rights by a rights adviser shortly after their legal status has changed. The rights adviser cannot be a person involved in the direct clinical care of the person to whom the rights advice is given. There are eight mandatory rights advice situations, most of which only affect patients in psychiatric facilities. The rights adviser has the responsibility to explain the significance of the legal situation to the individual. If requested to do so, the rights adviser will the person to: apply for a hearing to challenge the finding before the Consent and Capacity Board, retain a lawyer; and apply for financial assistance from Legal Aid Ontario. Prescribed government forms must be completed to verify that rights advice was given. The lack of, or untimely, rights advice can invalidate a finding of capacity. Rights advice is viewed as a legal protection to ensure fairness and access to justice.
ACE’s Recommendations
ACE considered recommending a legislative amendment to require the provision of independent rights advice to each individual when they are found to be incapable regarding treatment or admission to a care home, or alternately, to every resident of a retirement or long-term care home found to be treatment incapable. We abandoned this idea due to its impracticality. There are in excess of 76,000 long-term care home residents in the province, and likely at least that many in retirement homes, with a large number of incapacity decisions being made daily, making the expense exorbitant.
In order to protect the security of individuals by educating them about their legal options after a finding of incapacity, ACE is of the view that section 17 of the Health Care Consent Act should be reinforced. Instead of allowing health practitioners to follow the policies of their regulated College, there should be a duty on health practitioners to provide specified rights information which would be set out in regulation. Further, there should be a requirement for health practitioners to complete a regulated form, similar to the Form 33 that is currently used if a patient in a psychiatric facility is found incapable of a mental disorder, to give notice of the finding to the person.[376] The form should include a checklist indicating that the health practitioner has done the following: satisfied the statutory requirements for consent (e.g., discussed the risks and benefits of the proposed treatment); provided information about the appeals process; and, if instructed to do so, assisted the person to submit an application to the Consent and Capacity Board.
As part of the Ministry of Health and Long-Term Care’s compliance process, special attention should be made to ensure that informed consent to treatment is obtained in long-term care homes. At present, while the Residents’ Bill of Rights includes the requirement that this law be followed, there appears to be little attention paid to it during the inspection process.
There are significant concerns regarding the use of antipsychotic medication in the elderly in general and, more specifically, the long-term care sector. This topic was discussed at length earlier in this paper. According to Hagen et al., if the American regulations requiring safeguards for antipsychotic use were applicable to the Canadian long-term care homes in their study, “84.3% of the prescriptions could be deemed to be inappropriate, due to the lack of timely efforts to reduce the amount of antipsychotic medications received.”[377] Thus, we recommend that similar regulations be passed and enforced by the Ministry of Health and Long-Term Care to ensure the careful and appropriate use of these medications.
Enforcement and Sanctions in Long-Term Care Homes
Inspections in long-term care homes are carried out by compliance advisors. Although the legislation is silent about the qualifications of these advisors, the Ministry of Health and Long-Term Care has decided to appoint registered nurses to this position, as opposed to trained investigators.[378] ACE recommends that the Ministry examine the appropriate skill-sets necessary to be a compliance advisor. Further, the Ministry should employ special investigators who would be trained to investigate serious or potentially serious issues, such as elder abuse or neglect. One can look, for example, to the investigators under the Protection for Persons in Care Act in Alberta. Their investigators may come from a variety of backgrounds, such as criminology, nursing and social work, and have expertise in areas such as long-term care, mental health and law enforcement. While we are not proposing that investigators must be independent of the Ministry, we believe that one of the drawbacks of the present system is the fact that compliance advisers both inspect and investigate complaints. This can cause problems as the compliance advisers often have an ongoing relationship with the home, which can be perceived as prejudicial when it comes to the investigation stage. A separate unit of investigators with diverse backgrounds and no ties to the homes would likely improve both perceptions about the complaints process and the actual results.
ACE also believes that there needs to be increased transparency respecting the public inspection reports available on the Ministry website. The available information is not up-to-date or organized in a manner which is easy to understand. It also provides insufficient details about the actual infractions as it merely states which general criteria or standard was unmet. Posting the actual inspection report (minus any identifying information about residents or staff) would be beneficial for several reasons. First, it would be an impetus for homes to improve as the public would have greater access to detailed information and be less inclined to choose homes with a higher number of complaints and unmet standards. Second, it would benefit some homes by showing that their infractions were administrative in nature and not reflective of poor resident care. The Ministry should look to other countries (e.g., Wales and Australia) which post significantly more comprehensive reports as examples.[379]
ACE does not recommend a rating system similar to that of the United States for retirement or long-term care homes because it is a blunt instrument which does not capture the subtleties of the reality of a home.
As there is no concrete enforcement mechanisms in the Residents’ Bill of Rights, ACE also suggests an intermediate sanction such as fines payable to aggrieved residents and families. For instance, the new Long-Term Care Homes Act, 2007 allows the Ministry to levy fines against homes where convicted of an offence under the legislation.[380] We propose that either a portion or the entire sum should be allotted to the resident or family member who experienced an infringement of their rights, as opposed to going to the Ministry of Health and Long-Term Care.
Specialized Tribunals, Expedited Court Processes and Damages
To combat barriers inherent to the justice system, ACE contemplated the creation of a specialized tribunal or an expedited court process to deal with issues affecting older adults.
We could only find two precedents for tribunals dedicated to the elderly, or at least one aspect of elder law. In India, the Maintenance and Welfare of Parents and Senior Citizens Act directs states to create Maintenance Tribunals which have the powers of a civil court to determine claims for maintenance. The legislation places an obligation on children and relatives to provide sufficient maintenance to enable the older adults to live a “normal life.” Although the legislation was created in 2007 and stipulated that the tribunals were to be set up within six months, it appears that the government has not yet done so.[381] In China, article 43 of the Law of the People’s Republic of China on Protection of the Rights and Interests of the Elderly stipulates that a court will “accept and handle” cases involving the abuse of the rights or interests of older adults without delay.[382]
Neither residents nor other stakeholders endorsed a specialized tribunal or expedited court system for older adults. Residents were opposed to litigation as a tool to enforce their rights because they preferred a non-adversarial approach with quick results.
Unfortunately, some cases will be so egregious that court proceedings may be the best option. However, if an older adult or their dependent wanted to purse a claim of negligence, one of the elements that must be proven is the suffering of damages. As previously discussed, the measure of damages is tied to income and life expectancy.
ACE’s Recommendations
Administrative tribunals, by their very nature, are supposed to have expertise in the areas in which they adjudicate. As elder law is not homogenous, ACE does not believe it is appropriate to create a tribunal with jurisdiction over a broad range of areas of law. We do not recommend an elder law tribunal for this reason, as well as the lack of support from stakeholders.
To encourage older adults to pursue litigation, where appropriate, ACE believes statutory provisions should permit civil actions without proving damages and permitting the court to award general damages.
Mediation
Mediation is “a process in which a trained neutral assists disputants in framing issues in dispute, enhances communication between parties, helps parties develop possible solutions, and aids them in reaching mutually acceptable agreements.”[383] Characteristics of mediation include confidentiality and voluntariness. Cited advantages of mediation have been described as follows:
Mediation can be quick, flexible, inexpensive, convenient, humane, empowering. It allows the parties to talk to each other in a setting that is constructive and secure. Solutions that emerge can be more creative and more suited to individual needs than might be possible through traditional legal channels. Parties may adhere better to solutions they have designed themselves.[384]
American scholars, mediators and lawyers have identified serious ethical concerns in the area of elder and guardianship mediation, such as:
· Impartiality of mediations;
· Ensuring capability to mediate;
· Risk management in terms of abuse, neglect and self neglect;
· Conflicts of interest;
· How to decide if mediation is appropriate;
· Funding/fees; and
· The necessity of legal advice or representation.[385]
It has been said that using mediation to resolve conflicts in the long-term care sector may be one of the most challenging settings because:
It combines all the usual problems of a workplace and an intense living place, overlaid with deep emotional responses to aging, negative stereotypes of nursing homes, and the wrenching surrender of loved ones to the care of an institution…Conflicts occur between and among all of the primary constituents: nursing home staff, residents, and families of residents.[386]
In response to new legislation in British Columbia requiring mandatory mediation for adult guardianship applications, as well as the lack of substantive literature or educational materials about elder law mediation, the Canadian Centre for Elder Law is undertaking a comprehensive research project. It will be the first research study of its kind in Canada to substantively address legal, ethical, social and legal practice issues raised by both mandatory and voluntary elder and guardianship mediation.[387] Consequently, ACE believes it is premature to make a recommendation respecting mediation in advance of this study.
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