A.    Introduction

This final chapter of the discussion paper considers assistance with the law, including supports to understand what options and services people may be eligible for, and to navigate the health care system and rights in health care. It draws on the lived experience of individuals who use the law, focusing on challenges that become apparent when the law “on the books” is implemented or when conflicts occur.

We begin by examining strategies to address the lack of coordination between care settings that persons typically transition through as they near the end of life (for instance, from home to hospital, hospital to long-term care home, or retirement home to residential hospice). Then, we consider ways to prevent and resolve disputes without having to pursue a formal complaint through existing administrative law processes. Finally, we conclude the discussion paper with a review of the need for greater public education on relevant laws, policies and programs.

At this time, we also remind readers that a comprehensive list of questions the LCO has posed in this discussion paper is listed in Appendix G, “Questions for Discussion”.

B.    Navigating Transitions between Care Settings

1.      Moving from place to place in the last stages of life

Nearly all persons who are dying will transition between care settings at some point in the course of their illness. Because the illness trajectory for each person is unique – it may be long or brief, relatively stable or fluctuating – a common feature of the dying process is moving from place to place, from one care setting to another in response to changing circumstances.

As we have mentioned previously in this paper, people in Ontario may receive care in a variety of locations, including their own homes through community-based services, long-term care and retirement homes, hospital departments and in residential hospices. When we use the term “transitions” in this paper, we refer to movement between these locations and also within them. For instance, a person in hospital may be transferred from the ICU to complex continuing care (for a longer stay) or to a dedicated palliative care unit.

Timely, well-coordinated and appropriate transitions are a crucial part of quality care for persons in the last stages of life.[807] During the LCO’s consultations, stakeholders spoke about the value of smooth and appropriate transitions for persons who are ill, frail and vulnerable as well as for those who support them in navigating the system.

A key component of end-of-life care involves eliminating emotional, social and physical distress for individuals and their supporters.[808] However, inappropriate or poorly timed transitions increase distress for those who are already in an emotionally charged and difficult situation.[809]

An expert research paper that the LCO commissioned for this project confirms the importance of seamless transitions to the quality of care. Their report fills a gap in available information on Ontarians’ experiences with transitions by reviewing the literature and new evidence from statistical analysis and interviews. The authors, Donna Wilson and Steven Birch, explain the importance of transitions in the last stages of life as follows:

The ultimate aim of all [end-of-life] care efforts is a “good” death through a good dying process. Good deaths and good dying processes are extremely important to the dying person, their loved ones, their family and other caregivers, and society as a whole….

Of prime importance to a good death and a good dying process is appropriate and high quality care setting transitions. Mishap-free and mistake free care setting transitions are essential when moving from one care setting to another. Rapidly accomplished moves are also important when moving is required…. Every move has considerable personal, family, healthcare team, healthcare system, economic, and other costs.[810]

However, many Ontarians do experience problematic transitions. The LCO was told that people are often transferred from one place to another when they require a higher level of care, rather than having services come to them. Stakeholders identified numerous examples of inappropriate transitions, including, among others:

  • discharge from hospital to inappropriate settings such as hotels or shelters
  • readmission of persons from palliative care to emergency room services, because the patient has exceed the hospital limit for palliative care
  • hospital patients who wish to receive MAID at home may face challenges where the hospital physician or nurse practitioner is not permitted to perform this service outside of the hospital setting.

We heard that the process of transitioning between care settings can be lengthy, confusing and stressful. Within care settings, the situation can be much the same, as when a person waits in hospital for a palliative care bed or receives care from a new service provider who lacks necessary information, requiring patients to talk about their condition repeatedly.[811]

Transitions can also be a source of conflict among those involved in making decisions about changes in care. For example, the LCO has heard several accounts of family members requesting transfers to palliative care, but being denied the opportunity to do so expediently by health care providers. (For more information on dispute resolution, see section C, below.)

Uneasy transitions are clearly a source of frustration for everyone involved. Service providers told the LCO that they would like constructive solutions that improve the “hand off” of their patients moving to another setting. Delays in processing transitions can leave residential hospice beds underutilized, increase hospital stays, and reduce the possibility that patient wishes regarding their preferred place of care are respected.[812]

The lack of coordination among care providers was reported as a recurring theme in consultations for the Fraser Report as well. The Fraser Report found “The system struggles to ensure continuity of care, particularly when patients move from one care setting to another”.[813]

2.      Explaining problematic transitions between care settings

There are a number of explanations for why unnecessary, delayed or complicated transitions take place.

For the most part, these explanations do not lie in the legal framework. As has been noted elsewhere in this paper, there is no generalized right to health or palliative care. There are specific rights in law, although, as with laws related to the last stages of life as a whole, these are fragmentary, and tend to provide rights of refusal rather than rights of access. For example, while there is no right not to be discharged, to remain in a hospital bed or to receive palliative care, consent (by the individual or the substitute decision-maker) is required for admission to a long-term care home, so that an individual can not be discharged from hospital to long-term care without consent.[814]

Rather, the causes relate mainly to health care challenges and resource constraints.

The inability to receive a level of care necessary to die in place was one of the primary reasons for transitions identified in the LCO commissioned report.[815] Through an analysis of hospital admission data, Wilson and Birch found that the vast majority of persons who die in hospital after a transfer from a private home had not been receiving home care services.[816] Notably, most of the persons who died in hospital upon a return admission in the last year of life had previously been discharged to home with no home care services.[817] In addition, the LCO was informed that long-term care home residents may be transferred to hospital when they experience adverse health events nearing the end of life, because long-term care homes may not be equipped to provide end-of-life care as required by statute.[818]

If individuals who are in the last stages of life can receive the care they need in their preferred care setting, transfers to other locations (in particular, hospitals) could potentially be avoided.[819] However, there will still be clear instances where a change of care setting is unavoidable. For instance, a person’s condition may deteriorate to the point where they would benefit from the constant, intensive care that a residential hospice can offer. When transfers are necessary, they should be well-understood, fast and smooth. Yet Ontario’s system suffers from a lack of planning, coordination and supports for transfers.[820]

Another practical concern arises where a patient seeks MAID at a facility that doesn’t offer it. While certain protections are proposed – such as the requirement to facilitate a referral – the patient may struggle to reconcile their values and wishes with their vulnerable state, and the desire to avoid moving facilities or potentially causing conflict.

Palliative care is provided as a service within existing regulated sectors, which are fragmented and have limited capacity to offer care that follows the individual throughout the system.[821] Because care settings are regulated under separate statutes, funding structures and accountability mechanisms, the LCO heard there is often no legally mandated focal point to provide support with information about eligibility for external services and next steps. No one organization across the system is legally responsible for coordinating palliative care for individuals and families.[822] Most moves are not planned, but reactive to acute symptoms or new care needs.[823] As a result, individuals and families may be left to educate themselves about where to go for services.[824]

Communication barriers between care settings are another major problem. Communication barriers include delays in forwarding medical records to new providers and a general lack of information sharing.[825] The Fraser Report explains that poor communication results in confusion and stress for patients and caregivers. According to Fraser,

When a patient has to move between settings, communication is key. Everyone in his or her circle of care needs to know what is going on…. While the need for two-way sharing on information and coordination of care may seem obvious, it doesn’t happen often enough. As a result, patients and families – who are already under stress – may have to endure unnecessary duplication of tests and assessments, and longer wait times.[826]

Wilson and Birch emphasize that because end of life care is not planned, managed, delivered or evaluated as a core healthcare program but is instead included in care delivered under other healthcare programs, there is a limited capacity to assess, plan and evaluate these services. These limitations in coordination and communication are a major cause of inappropriate care setting transitions, low quality care setting transitions, and the delay of necessary transitions.[827]

Taken together, explanations for inappropriate, untimely or poorly coordinated transfers can thus be summarized as arising from these and other factors:

  • difficulties receiving an adequate level of care in one’s preferred place of residence
  • insufficient coordination and communication across care settings, which are regulated separately
  • lack of supports for patients and their supporters navigating Ontario’s system.

3.      Creating navigational supports for transitions

The care needs of persons in the last stages of life will naturally change over time. Depending on the circumstances, transitions from one care setting to another may be avoidable or they may be necessary. Quality care in the dying process demands that these moves be minimized, as much as possible, and that they occur seamlessly when they are necessary through careful planning, communication and timely transfers.

The Government of Ontario is currently taking steps to improve the coordination of health care across sectors to ensure that patients experience seamless services as part of its initiative, Patients First: A Roadmap to Strengthen Home and Community Care.[828]

For example, Ontario is seeking to introduce “a bundled care approach, in which a group of providers will be given a single payment to cover all the care needs of an individual patient”.[829] Under this model, services will follow individual patients, rather than patients having to find and coordinate multiple providers themselves. Ontario is also introducing “self-directed care” to enable patients and caregivers to receive an allowance for purchasing services from providers of their own choosing.[830] Additionally, the Province has committed to implementing a “comprehensive program to improve access to and equity in palliative and end-of-life care at home and in the community”,[831] which could potentially decrease avoidable transitions.

Aside from the government’s initiatives in home and community care, it recently initiated the restructuring of the health care system under Bill 41 the Patients First Act, 2016 which received royal assent December 8, 2016. The Act partly aims to ground “health services in patient needs, with better transitions between different types of care”.[832] Among other measures, the Act promotes easier transitions between acute, primary, home and community, and long-term care; to improve communication with patients and families; and to improve communication among providers through reporting and information sharing.[833]

The establishment of the OPCN and development of a provincial palliative care strategy also creates possibilities to strengthen palliative care across all care settings, which might also minimize unnecessary transitions.

With respect to MAID, Ontario has made several announcements to enhance access to and navigation of services.

While the government is continuing to look at ways to integrate palliative care across the various health care sectors to provide patients with a more seamless experience, there still may be opportunities for the LCO’s project to consider ways to help ease transitions.

The new Patient Ombudsman may have a role to play in addressing problematic transitions. As was described at more length in Chapter 4.F, the Patient Ombudsman has a mandate to help people who have an unresolved complaint about their care at a hospital, long-term care home or Community Care Access Centre. The Ombudsman can respond to complaints from patients and caregivers, but can also investigate on her own initiative. Investigations may result in recommendations to the health care organization in question.[834]

The LCO’s project could investigate further measures to complement the government’s efforts. For instance, we could review the possibilities for the establishment of a focal point, specifically designated to support persons who are dying and caregivers. Such a focal point could act as a care coordinator, providing basic education on eligibility for services, facilitating communication with health care providers, and generally assisting with navigating the health care system.

Given the complexity of this area, it may be challenging to establish a single focal point that can truly coordinate across all the interacting sectors. Another approach may be to identify strategies, policies or supports that can encourage collaboration within each sector. The LCO would be interested in hearing the benefits and disadvantages of such an approach, and what effective strategies, policies or supports for collaboration might look like.

During our consultations, the LCO would like to know more about the nature of transitions that Ontarians experience and what they believe are the options for reform.

C.     Early Access to Dispute Avoidance and Resolution

1.      Importance of addressing disputes nearing the end of life

Death and the dying process are emotionally charged experiences for everyone involved – individuals, family, friends and health care providers, alike. Expectations and decisions in this context are bound up in perceptions of what health care can achieve, ethical views, deeply rooted beliefs, and legal rights and duties.[835]

It is not surprising that disputes arise in these circumstances and that, when they do, they can have serious repercussions on everyone’s well-being. As a result, effective mechanisms to avoid and resolve disputes in the last stages of life are an essential component of quality of care.

Conflicts in the last stages of life may revolve around health care decision-making, eligibility for services or concerns about the quality of care being provided. As such, depending on the case, disagreements can take place in multiple care settings about many different matters. Disputes may occur among the various individuals involved in decision-making, including patients, SDMs, family members, health care facility and providers.[836]

For this project, stakeholders spoke to the LCO most often about conflicts taking place in hospital, especially in the ICU, where urgent choices must be made about a fairly narrow range issues. They said areas of heightened dispute in this setting include

  • decisions over whether life-sustaining treatment is provided or withdrawn, including differing views on cultural values, clinical benefits and the patient’s best interests[837]
  • the availability of and timeliness of transfers to palliative care
  • discharges from hospital into the community.

For example, the family of a patient who has very little time left may face resistance from hospital staff when they request a transfer from the ICU to a palliative care unit. A health facility might propose to discharge a patient from complex continuing care back home into the community over the family’s objections. Substitute decision-makers might also decide to keep someone on life support indefinitely against health care provider recommendations.

To an extent, ongoing developments in Ontario to strengthen palliative care may help to diffuse certain sources of conflict – as may any reforms resulting from the LCO’s own projects. In this discussion paper, specifically, we address challenges relating to the following issues, which could go a long way in decreasing conflicts about end-of-life care:

  • Equitable access to care for all Ontarians
  • Decision-making authority over life-sustaining treatment
  • Practice tools for consent and advance care planning
  • Palliative sedation therapy
  • Coordinating transitions between care settings
  • Accommodations and support for faith and cultural communities.

Ideally, clear legal frameworks on these issues could tackle the root causes of disputes, including cultural differences, misunderstandings about consent and advance care planning, bad transitions and disagreements over life-sustaining treatments.[838] Nevertheless, there will inevitably be situations where the parties cannot resolve their differences through legal clarity. Therefore, the LCO’s project considers what practices can be used to both minimize and resolve disputes.

Specifically, we consider mechanisms to decrease conflicts at an early stage before pursuing a formal avenue of recourse through the courts, regulatory colleges or administrative tribunals. As we explain below, we were told that such formal avenues of recourse may work well in some cases, but may not be suited to cases that require expeditious and sensitive strategies to diffuse conflicts in the setting where individuals are located, such as the ICU.

2.      Existing avenues of recourse

There are several formal avenues of recourse to resolve conflicts in the last stages of life in Ontario. In chapter 4 of the discussion paper, we summarized these processes, which include the following:

  • Complaints to regulatory health colleges, such as the CPSO and College of Nurses of Ontario
  • Applications to the Consent and Capacity Board (on decision-making issues)
  • Applications to the health boards (to review regulatory college decisions as well as OHIP, and home and community care eligibility decisions)
  • Complaints to the Patient Ombudsman.

In that previous chapter, we outlined many of benefits and limitations of these formal dispute resolution processes. In particular, we explained that the CCB can hear applications that are stipulated in the Health Care Consent Act, 1996, but these only concern a slim set of decision-making matters, not issues about the quality of care.[839] Although the CCB process can be fairly fast, appeals to the courts can also last a significantly long time.[840] Furthermore, while HPARB can review decisions of regulatory colleges about whether health care providers have met their practice standards (and therefore about the quality of care), the initial complaints process that passes through the regulatory colleges can be quite lengthy.[841]

More generally, patients and their families usually have only limited understanding of the available dispute resolution processes, and so may not access them or may not use them effectively. During the LCO’s project on Legal Capacity, Decision-making and Guardianship, many health care providers expressed reluctance to CCB processes. These professionals viewed the process as inappropriately adversarial, time-consuming, and in some cases, as not aligned with their values and their understanding of their roles. While the CCB was intended as a faster, simpler, less adversarial and more expert forum for these issues than the courts can provide, it is clear that there are inherent tensions in its mandate and that it faces many practical challenges.

During the LCO’s consultations for this project, we heard considerable interest in alternative dispute resolution methods that can be accessed prior to initiating administrative procedures. Expediency and usability are critical assets for dispute resolution processes in this area of the law, especially when end-of-life decisions and services are at stake.

As a practical matter, most dispute resolution in this context is taking place through internal or informal processes.

Stakeholders told us that the majority of disputes are actually resolved in a person’s care setting through good communication between health care providers, patients and SDMs.[842] Health facilities, such as hospitals, may have internal policies and procedures to promote good communication and to resolve escalations in conflict within their facilities. These practices can offer a low-cost and non-adversarial means of resolving issues.

Examples of existing practices for informal dispute resolution within health care facilities include:

  1. Patient relations processes: Under the Excellent Care for All Act, 2010, hospitals are required to have a “patient relations process” to review complaints from patients and caregivers.[843] The MOHLTC has prepared a guidance document on how to design these processes. Among other suggestions, the MOHLTC’s guidance recommends the establishment of an impartial, confidential and easily accessible process for patients and family to raise concerns about their experiences. It also suggests that a dedicated patient relations role should include “facilitation, mediation and conflict resolution of patient and family concerns” as well as “coaching staff and physicians on communication styles and stakeholder perspectives, mediation, and conflict resolution.”[844] Despite the MOHLTC’s guidance, the Excellent Care for All Act, 2010 does not expressly set out what the patient relations process should comprise and, in practice, it varies from hospital to hospital. An LCO survey of Ontario hospital websites illustrates that that interpretation of the patient relations process differs substantially, ranging from a feedback mechanism to a more robust tool for conflict resolution.[845]
  1. Patient advocates: Hospitals may employ “patient advocates”, who are dedicated staff that hear patient and family concerns. In some hospitals, patient advocates are part of the patient relations office while, in others, they are specialized personnel. The role of patient advocates has been characterized as a means to fix the breakdown in relationship between the health team, and the patient and family.[846] Patient advocates may also “take on some of the attributes of an ombudsman” because they are independent of the team arranging the person’s care.[847] However, the LCO was informed that patient advocates are, or maybe be seen, to be partial to the facility’s interests, given their employment relationship with the hospital.
  1. Ethicists: Ethicists (working in ethics offices or on committees) may be called upon to intervene in difficult conflicts.[848] They may mediate between the parties or provide advice to health care providers and facilities based on a matrix of ethical, legal and medical considerations. The LCO learned that ethicists may become involved in disputes about matters, including life-sustaining treatment, capacity and consent, and when discharges may or may not be appropriate. Yet similar concerns exist to those respecting patient advocates – ethicists are or may be perceived to be representing the health care providers or facility, rather than the patients or family members needing supporting.

There are a number of other dispute resolution practices that stakeholders spoke to the LCO about, such as the involvement of legal counsel on behalf of the health team, the use of private lawyers and legal aid clinics to represent patients and family members (either external to the facility or as satellite clinics onsite),[849] and medico-legal partnerships involving law student volunteers or others who give advice about the law onsite.[850]

The available practices discussed above are also consistent with the CPSO’s guidance on managing conflicts in its policy on end of life care. The CPSO’s policy requires physicians to take specific steps in order to minimize and resolve disputes, which could involve an ethics consultation, seeking legal advice and applying to the CCB, as appropriate. It also prioritizes good communication by requiring physicians to,

  • Communicate clearly, patiently, and in a timely manner information regarding:
  • The patient’s diagnosis and/or prognosis
  • Treatment options and assessments of those options
  • Availability of supportive services (e.g., social work, spiritual care, etc.) and
  • Availability of palliative care resources.
  • Identify misinformation and/or misunderstandings that might be causing the conflict and take reasonable steps to ensure that these are corrected and that questions are answered.[851]

 Some of the shortcomings of informal practices in health care facilities have already been noted above. For example, the implementation of statutory requirements for a patient relations process may different in each facility. When the LCO asked participants in our preliminary interviews what policies and programs are used most commonly to resolve disputes nearing the end of life, most participants were at a loss to describe a clear pathway within health care facilities.

Concerns have also been expressed as to whether internal processes are adequately informed by and ensure compliance with the law.

In addition, informal processes are generally administered by a party with an interest in the dispute – the hospital.[852] This potentially compromises the process or creates a perception of bias that may make patients and caregivers uncomfortable.[853] Informal processes must also be able to address power imbalances between the health team and members of the public. Professionals tend to have better knowledge and expertise in highly technical medical environments, which may be unfamiliar to the public.[854] This power imbalance is further exacerbated by feelings of anxiety, fear and denial that make it difficult for patients, family and friends to absorb information.[855]   There may be insufficient focus in these processes on ensuring that families understand their roles and responsibilities as substitute decision-makers. The LCO has heard that families may feel that these processes are being used to pressure them into agreement with the viewpoint of the health institution.

There are undoubtedly certain benefits to having a person, such as a patients advocate or ethicist, work onsite at a care facility. They are familiar with the facility’s policies and practices, have experience with medical issues, and may be able to respond quickly as needed.[856]

Still, for the LCO, alternative dispute processes must be – and be seen to be – fair, impartial and consistent with the law. The challenge is to find the balance between a person who is neutral but also knowledgeable about medical matters, the requirements of the law and the nature of the institution.

3.      Early and effective dispute resolution mechanisms

There may be a range of strategies to improve ADR in the end-of-life context. The LCO has heard that although various avenues of recourse are available in Ontario through complaints processes to health colleges and applications to the CCB, there is a need for new solutions when urgent decisions are being made about death and dying, especially in the hospital context.

In the LCO’s report on Legal Capacity, Decision-Making and Guardianship, we proposed recommendations that could change the landscape of options for dispute resolution where decision-making issues are engaged. We suggested, for example, the expansion of the CCB’s jurisdiction to hear certain applications.[857] We also proposed that “greater room should be made within Ontario’s legal capacity, decision-making and guardianship system for mediation and other forms of alternative dispute resolution”.[858]

Furthermore, as we noted earlier in this paper, the Patient Ombudsman is a recent addition to Ontario’s health care system that could change the options for dispute resolution. Following a complaint from a patient or caregiver, the Patient Ombudsman is mandated to work with the complainant, the health care organization and the relevant LHIN, as appropriate, to facilitate a resolution. The Patient Ombudsman can also conduct an investigation of the complaint, which could result in recommendations to the health care organization, or conduct investigations on her own initiative.[859]

Because the Patient Ombudsman’s office is relatively new, there is little information available to understand its role and effectiveness. Additionally, it is not clear at this time what formal and informal avenues of recourse patients and caregivers will be required to access before engaging the Patient Ombudsman, including the patient relations process, patients advocates, ethics consults, legal advice or accessing the CCB, regulatory colleges and health boards.[860]

The LCO’s project faces challenges considering recommendations in the area of ADR because it is in a state of development. In general, it will be important to set clear benchmarks for effective and appropriate alternative dispute resolution in this area, and to build in strategies for monitoring and regularly evaluating the use of alternative dispute resolution in this area.

As a matter of law reform, we might consider whether the Patient Ombudsman could be charged with investigating informal dispute resolution in health care facilities, identifying problems and making recommendations for improvement, specifically in the end-of-life context.

Our project might also consider whether the Excellent Care for All Act, 2010 provisions on patient relations processes should be more detailed or revised to achieve consistency across care settings, address power imbalances between health teams and members of the public, and ensure impartiality through the independence of patient representation.

The LCO also wonders if strategies being considered under other issues in our project could minimize and facilitate dispute resolution. For instance, in our section on transitions between care settings, we suggested that the LCO could review the creation of a legally mandated focal point (such as care coordinator or system navigator) for persons in the last stages of life (see section 7.B, above). We would like to hear more from you about the advantages and drawbacks of establishing such a position, and whether it could involve better conflict resolution supports.

D.    The Provision of Public Legal Education

Ontario’s legal framework for care in the last stages of life is rapidly evolving through a number of initiatives within government, community programs and the LCO’s own project. These are immensely positive developments in an area that is in serious need of reform as Ontario’s community ages, becomes more diverse and adopts new values about death and dying. However, these reforms cannot be successful without awareness about the laws that underpin services and supports.

In this discussion paper, we have written about education throughout in different contexts. For instance, we examined education about death and dying as a special focus of the public health approach to palliative care (chapter 4.C.3). We discussed the lack of education for health care providers on palliative and end-of-life care in long-term care homes and other settings (chapter 5.D). Furthermore, we summarized the LCO’s recommendations in our project on Legal Capacity, Decision-Making and Guardianship relating to strengthening education for health care providers, legal professionals, SDMs, patients, family members and others on the law of capacity and decision-making (chapter 6.D.3).

Without repeating those previous sections, we would like to briefly emphasize the necessity for education specifically about Ontario’s laws or “public legal education”.

From the LCO’s consultations to date, we received the strong message that laws affecting care in the last stages of life are generally not well-understood, even by legal professionals. Capacity and decision-making laws are incredibly complex and require enhanced education, as we have addressed in our project on that subject. Yet there are other laws related to care nearing the end of life that are equally confusing that this new project reviews, such as the Human Rights Code; Long-Term Care Homes Act, 2007; Home Care and Community Services Act, 1994; Vital Statistics Act; Occupational Health and Safety Act; laws related to medical assistance in dying; and the Canadian Charter of Rights and Freedoms.

One of Ontario’s overarching visions for the health care system is the integration of services across sectors and a seamless experience for patients and families.[861] However, integration and seamlessness are challenging to realize when regulation of the system fragmented. In total, the LCO’s project reviews 19 pieces of legislation and many more policies, guidelines and other legal tools. (A full list of statutes that the LCO’s project reviews is found in this paper at section 4.H).

Aside from enhancing coordination of health care services through other means, such as legislative reform, what this indicates is that coherent, user-friendly education about what the law provides is indispensable to comprehensive care.

Legal eligibility criteria for home care, procedures to apply for caregiver leave, requests for faith and cultural accommodations and how to file a complaint with the Patient Ombudsman – these are examples of rights that are created under separate laws, but that affect persons who are dying and their supporters at the “center” of care. Consequently, in this project, we ask whether public legal education about laws affecting the dying process could be more responsive to the lived experience of individuals.

Moving forward in the project, we would like to learn more about how public legal education could be reinforced. For instance, there are established initiatives for education about the law within the legal community. What role might these initiatives play?

Community Legal Education Ontario (CLEO) is an example of an established public legal education program.[862] CLEO is a legal aid clinic that works in partnership with other legal aid clinics to provide legal education and information that helps people understand and exercise their rights. It also hosts a website, called “Your Legal Rights” that has basic legal information on various topics, answers to common questions and links to resources produced by external organizations.[863] CLEO has a focus on access to justice in areas including health and disability, social assistance, employment and work, and the justice system, which potentially overlap with laws affecting the last stages of life.[864]

Another strategy might be to consider whether the proposals we received on creating a legal focal point or care coordinator for issues concerning transitions between care settings and ADR could also be a source of public legal education.

Although the above options might be most relevant to patients, caregivers, SDMs, and other family and friends, the LCO recognizes that public legal education would also benefit professionals who support these individuals, regulatory colleges, advocacy organizations and health facilities.

Providing education in accessible formats and languages, and user-friendly dissemination strategies are also elements of possible future recommendations about public legal education on which the LCO would like to receive your feedback.

E.     Questions for Discussion

20. What are your experiences as a patient or caregiver transitioning between care settings in the last stages of life?

21. Are law reform measures needed to improve access, navigational supports, and the coordination of care within the health care system?

22. What strategies, processes, or institutions are best suited to resolving disputes in the last stages of life?

23. How can legal information or education about the law be made more relevant, timely, and effective in the last stages of life?