Waiting for health care: what role for a patients' bill of rights?

• Author: Flood, Colleen M.
• Position: Canada

Introduction I. What Are Canadians' Concerns? II. Rights in and Rights to Health Care A. Rights in Health Care 1. Self-Regulation 2. Civil Liability 3. Internal Complaints Mechanisms 4. Conclusion: A Patients' Bill of Rights in Health Care? B. Rights to Health Care 1. Charter Cases 2. Administrative Tribunals and Judicial Review 3. Rights to Timely Treatment? III. Lessons from Different Jurisdictions A. Quebec, Canada B. United States C. New Zealand D. United Kingdom E. Spain F. Sweden G. Italy Conclusion While Canadians are generally satisfied with the quality of the health care they receive, many are increasingly concerned about access to health care services and, in particular, about waiting times for treatment. These concerns have been fuelling the growing momentum for health care reform over the past few years. One of the reform possibilities currently being considered at both the federal and provincial level is a patients' bill of rights, which would confer certain rights on all users of the health care system.

In this article, the authors explore the merits of a patients' bill of rights and examine whether or not such a reform would address Canadians' concerns regarding the public health care system. The authors begin by highlighting Canadians' concerns about access to health care and discussing the perception that waiting times are increasing. They then explain the distinction between rights in and rights to health care and the extent to which these different rights can be protected in Canada. Finally, the authors present a detailed survey of the experiences of seven jurisdictions in implementing and enforcing a patients' bill of rights. In particular, the authors focus on those jurisdictions that have established the right to access health care services in a timely fashion and examine the mechanisms created to enforce this right. Drawing on the lessons from these jurisdictions, the authors conclude with suggestions regarding the potential models that could be used to guarantee patients' rights in Canada.

Si les Canadiens sont en general satisfaits de la qualite des soins de sante qu'ils recoivent, plusieurs sont neanmoins de plus en plus preoccupes par l'acces ces services et, en particulier, par les temps d'attentes pour les traitements. Ces preoccupations nourrissent depuis quelques annees un mouvement croissant en faveur d'une reforme du systeme de sante. L'un des projets de reforme presentement sous etude, tant au niveau federal que provincial, est la redaction d'une charte des droits des patients qui confererait certains droits a tousles usagers du reseau public de la sante.

Dans cet article, les anteures considerent les merites d'une charte des droits des patients et se demandent si une telle reforme repondrait aux attentes des Canadiens envers le reseau public de la sante. Les auteures commencent en soulignant les preoccupations des Canadiens quant a l'acces aux soins de sante et en discutant la perception selon laquelle les temps d'attente tendent a augmenter. Elles expliquent la distinction entre les droits dans les soins de sante et les droits aux soins de sante et dans quelle mesure ces differents droits peuvent etre proteges au Canada. Enfin, les anteures proposent une revue detaillee de l'experience de sept juridictions avec l'implantation et la mise en vigueur d'une charte des droits des patients. Les auteures portent une attention particuliere aux juridictions ou l'acces rapide aux soins de sante dans un delai raisonnable a ete reconnu dans leurs chartes respectives des droits des patients et examinent les mecanismes crees pour faire observer ce droit. Les auteures terminent en suggerant, sur la base des lecons tirees des autres juridictions examinees, des modules potentiels pouvant garantir les droits des patients au Canada.

Introduction

There is momentum for health care reform across Canada. At the federal level, the Standing Senate Committee on Social Affairs, Science and Technology, chaired by Senator Kirby, released its final report on the state of the health care system in Canada in October 2002. (1) This was followed by the final report of Roy Romanow's Commission on the Future of Health Care in Canada in November 2002. (2) The Kirby and Romanow reports followed closely upon the heels of reports commissioned by various provincial governments, including Alberta, (3) Saskatchewan, (4) New Brunswick, (5) and Quebec. (6) These reports call for varying but significant health care reform. But what kind of reform might governments implement from the range of options presented?

One possibility for reform is to establish a "patients' bill of rights", either nationally or on a province-by-province basis. We define a "patients' bill of rights" as legislation enumerating and consolidating those patients' rights that exist at common law as well as rights from other sources (e.g., duties that are described in medical codes of ethics). A patients' bill of rights would confer rights on users of all health care services (whether publicly funded or not, and whether provided by a regulated health professional or not) and place corresponding obligations on providers of those services. This bill of rights would provide, through an independent commissioner or ombudsperson, a process for patients who believe that their rights have been breached to make a complaint. The commissioner or ombudsperson would also have powers of investigation and enforcement.

Recently, a number of Canadian provinces have independently either implemented or are considering implementing a patients' bill of rights. Quebec, since 1991, has had legislation setting out patients' rights (7) and has recently enacted new legislation that gives the ombudsperson greater power to enforce those rights. (8) In New Brunswick, the government recently introduced a bill that would establish a health charter of rights and responsibilities. (9) The previous Conservative government in Ontario promised legislation to protect "patients' rights to access health services, to complete information about their health, and to respect for their privacy, personal dignity and safety." (10) Legislation is under development (11) but had not yet been introduced at the time of writing and appears to have stalled under the new Liberal government in Ontario. The introduction of a patients' bill of rights has also been considered in Saskatchewan and Manitoba. (12)

At the federal level, the senate committee under Senator Kirby put forward a patients' guarantee vis-a-vis waiting times as a reform option worthy of serious consideration, (13) while Roy Romanow, in his report, recommended the establishment of a "Canadian Health Covenant" that would set out the responsibilities and entitlements of individual Canadians, health care providers, and governments. (14) The Kirby and Romanow reports were followed by the First Ministers' Accord on Health Care Renewal in February 2003. (15) The accord sets out an action plan for reform that states as its aim to ensure that "all Canadians have timely access to health services on the basis of need, not ability to pay, regardless of where they live or move in Canada," and that "the health care services available to Canadians are of high quality, effective, patient-centred and safe." (16) While the accord does not mention a patients' bill of rights, such a bill of rights could, if properly implemented, go some way toward ensuring that Canadians have access to timely and quality health care services, as required by the accord.

Although the idea of a patients' bill of rights has been considered at both the federal and provincial level, there are obvious jurisdictional issues that arise in the context of a federal bill of rights, as the existing jurisprudence interprets the Constitution Act, 1867 (17) in a manner that gives the provinces jurisdiction over most of the health care system. Nevertheless, it would be possible for the federal government to encourage, through financial incentives and disincentives, the province-by-province establishment of a patients' bills of rights, which would have the benefit of ensuring that all Canadians have the same entitlements, from coast to coast. The use of the federal spending and taxing powers in this manner has been previously upheld by the courts. We do not purport here to provide an exhaustive determination of the feasibility of a federal bill of rights, nor do we reach any conclusions about whether it would be better to have a pan-Canadian bill of rights as opposed to differing provincial initiatives across the country. Our modest goals here are to explore whether the proposals for a patients' bill of rights in Canada would address the concerns that Canadians currently have about their health care system and to highlight the lessons learned by other jurisdictions in implementing and enforcing a patients' bill of rights.

A recent national survey found that Canadians are strongly supportive of the concept of a patients' bill of rights. (18) Nine in ten Canadians indicated that they would support the appointment of an independent commissioner or ombudsperson to hear complaints about health care providers and health care services and make recommendations for actions to be taken. (19) A large majority (eighty-four per cent) of Canadians indicated that they would like to see the introduction of a bill of rights that sets out in one document the rights to which they are entitled as a patient. (20) When asked what rights they would like to see included in a patients' bill of rights, the most common answers included the right to be treated with respect and dignity, the right to be fully informed about one's medical condition and treatment, the right to give informed consent, and the right to receive care within a designated period of time. (21)

A patients' bill of rights is obviously a popular reform proposal, but would it actually address Canadians' concerns about medicare? If...