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PRB 01-31E
PATIENT'S BILL OF RIGHTS – A COMPARATIVE OVERVIEW
Prepared by: TABLE OF
CONTENTS RECENT INITIATIVES IN SIX COUNTRIES A. Canada B. New Zealand E. United
States PATIENTS’ BILL OF RIGHTS – A COMPARATIVE OVERVIEW Concern about the state of the Canadian health care system tends to centre on its long-term sustainability. The focus is on rising costs, funding, human resource shortages, the use of technology, and primary care reform. Recently, the ambit of this concern has broadened to include an increasing interest in patients’ rights which is being driven by a number of factors such as:
Canada is not alone in experiencing these developments. In an attempt to refocus the delivery of health care services to patients, countries such as New Zealand, the United Kingdom, Australia, the United States and Norway have seen the introduction of patients’ bills of rights and responsibilities, or patients’ charters, as they are sometimes called.(1) In some of these nations, patients’ rights have the force of law; in others, they are statements of health policy. Regardless of the form they take, these initiatives have two goals: to empower patients by providing them with certain rights and entitlements as they interact with health care providers and institutions; and to place the patient-health care provider relationship on a more equal footing. By outlining what is expected of health care providers, institutions and patients, they also serve as important guidelines for the delivery of health care services. This paper discusses recent initiatives regarding the development and implementation of patients’ bills of rights in Canada, New Zealand, the United Kingdom, Australia, the United States and Norway. RECENT INITIATIVES IN SIX COUNTRIES When discussing patients’ rights in the context of the Canadian health care system, it is important to distinguish between “collective” rights and “individual” rights and entitlements.
1. Rights and Entitlements in Relation to Health Care – Federal Initiatives a. Health Charter for Canadians The 1964 Report of the Royal Commission on Health Services (Hall Commission) put forward a “Health Charter for Canadians.”(2) This statement of collective entitlements was based on the assumption that the “achievement of the highest possible health standards for all people must become a primary objective of national policy....”(3) The Charter states that this objective can be best achieved through a “comprehensive, universal Health Services Programme for the Canadian people” that would be:
Certain principles – which were to become the basis upon which the federal government would contribute funding to provincial health care plans – were defined as follows:
From the federal perspective, the primary objective of Canadian health care policy – to protect, promote and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers – is outlined in the Canada Health Act.(8) The fundamental collective principles underlying the Canadian health care system are set out in the five program criteria found in the Act. They are:
“Public administration” ensures that the health care insurance plan of each province is administered and operated on a non-profit basis by a public authority that is responsible to the provincial government. “Comprehensiveness” means that each provincial health insurance plan must cover all “insured health services,” provided by hospitals, medical practitioners or dentists or similar or additional services rendered by other health care practitioners where permitted. The term “insured health services” is defined by the Act to include medically necessary “hospital services,” medically required “physician services,” and “surgical-dental services” when performed in a hospital. To satisfy the “universality” criterion, each provincial health insurance plan must cover all persons resident in a province. “Portability” means that residents moving to another province must continue to be covered for insured services by the home province during a minimum waiting period (not longer than three months) imposed by the new province of residence for insurance coverage, and that residents are insured for services outside their province of residence if they are elsewhere in the country or outside Canada. “Accessibility” means that insured health services should be provided on uniform terms and conditions and on a basis that does not impede or preclude reasonable access to those services. In order to qualify for the full federal cash contribution for health care, provincial health insurance plans must satisfy these criteria and must not allow extra billing or user fees for insured services. When coupled with the prohibition on extra-billing and user fees, these five program criteria establish the principal collective right to health care in Canada – reasonable access to medically necessary hospital and physician services without charge anywhere in Canada. Federal health care initiatives tend to focus on collective, system-wide principles and objectives rather than on the rights and expectations of individual users of the health care system. The absence of a federal focus on individual rights stems largely from the constitutional division of powers, which makes health care a provincial responsibility. Recently, however, federal politicians have expressed increased interest in patients’ rights. Mr. Greg Thompson (New Brunswick Southwest) introduced a Private Member’s Bill – Bill C-261, An Act to establish the rights of patients in relation to health, treatment and records (Patients’ Bill of Rights) – in the House of Commons on 12 February 2001. This bill, if passed, would set out a number of rights with respect to the health care system as a whole as well as a series of personal rights for patients.(10) In addition to outlining specific patients’ rights, the bill (clause 5) lists three health care responsibilities that patients would undertake:
The rights pertaining to the public health care system found in clause 3 of the bill provide that all Canadians would have the right to “national collaboration between governments” to assure:
Clause 4 of the bill outlines a substantial list of personal (individual) rights for users of the public health care system, including:
Recognizing that the provinces have primary responsibility for health care, the bill would enforce these rights through federal-provincial agreements and make full cash contributions to provinces under the Federal Provincial Fiscal Arrangements Act conditional upon the conclusion of federal-provincial agreements relating to patients’ rights. In its September 2001 issues and options document on the federal role in the Canadian health care system,(11) the Standing Senate Committee on Social Affairs, Science and Technology put forward a patients’ bill of rights as an option to address the problem of timely access to health care services. The Committee observed that adopting patients’ bills of rights at the provincial level would accommodate differing provincial situations and might even inject an element of competition into health care delivery. At the same time, the Committee noted that because many Canadians would not want to see substantial discrepancies among provincial standards, the federal and provincial/territorial governments could participate in the development of minimum standards for timely access to health care that would serve as the basis for provincial patients’ bills of rights.(12) 2. Rights and Entitlements in Relation to Health Care – Provincial Initiatives In dealing with rights and entitlements to health care, provincial governments have adopted a range of approaches: Quebec has legislated certain entitlements; the current Ontario government has made a commitment to enact a patients’ bill of rights; the Premier’s Health Quality Council of New Brunswick has proposed a New Brunswick Health Charter of Rights and Responsibilities; and other provinces have set health care goals, objectives and expectations in planning and policy documents. Private Members’ bills introduced in the Ontario and Alberta legislatures in the late 1990s also sought to enact a code of patients’ rights and responsibilities. A number of these initiatives are outlined below. a. AlbertaA Private Member’s bill – Bill 201, Alberta Patients’ Bill of Rights – was introduced in the Alberta Legislative Assembly on 28 January 1998. The purpose of the bill was to:
The bill would have provided patients with various rights, including the right to:
Bill 201 was defeated shortly after it was introduced.(14) The Ontario government has committed to introducing a patients’ bill of rights and tying hospital funding to how well hospitals deliver health care services.(15) Prior to this commitment, at least three Private Members’ bills to promote patients’ rights had been introduced in the Ontario legislature over a three-year span.(16) The most recent of these – Bill 18, Health Care Accountability and the Patients’ Bill of Rights Act, 1999 – which was introduced in April 1998, would have:
The bill set out the following collective and individual rights:
None of the three bills has become law. Quebec’s Act regarding health services and social services (Loi sur les services de santé et les services sociaux)(17) sets out entitlements with respect to health and social services. Included among these are entitlements to:
It should be noted, however, that the Act limits the application of health and social services entitlements by tying them to structural and economic constraints. The entitlement to health services and to choose one’s health care professional and institution must be exercised within the framework of the legislative and regulatory provisions relating to the organizational and operational structure of the institution and within the human, material and financial resources available to the institution.(19) The Act also created a three-tier regime for dealing with complaints against health care facilities and providers. Complaints were to be made first to the relevant institution, then to the appropriate regional board and finally to the government-appointed Complaints Commissioner who examined complaints from persons who were dissatisfied with decisions made by regional boards.(20) Bill 27, an Act respecting the Health and Social Services Ombudsman and amending various legislative provisions – which was introduced in May 2001 – replaces the Complaints Commissioner with a Health and Social Services Ombudsman (Health Services Ombudsman).(21) The Act streamlines the complaints procedure by creating a two-tier regime. In the first instance, local service quality commissioners and regional service quality commissioners examine complaints in relation to services and activities coming under their respective authorities. At the second tier, the Health Services Ombudsman hears appeals from complainants who are dissatisfied with decisions at the quality commissioner level. The Act also gives the Health Services Ombudsman the power to intervene in circumstances where there are reasonable grounds to believe that a person or group of persons has been or may likely be adversely affected by an act or omission of an institution or a regional board.(22) In Nova Scotia, the provincial government originally tasked the Provincial Health Council with developing a Patient’s Bill of Rights. However, the Council produced a set of “Expectations for Health and Health Care in Nova Scotia” after concluding that a legislated patients’ rights document “would pose innumerable legal problems that might take decades to resolve through the courts.”(23) The expectations fall into three broad categories: the attainment and maintenance of health for persons, families and communities; the development of health care and related services; and the provision of health care and related services. The latter two categories contain 10 expectations related to the development of the health care system and 21 expectations pertinent to the provision of health care. The Expectations relating to the development of health care deal largely with what Nova Scotia residents should reasonably expect at the policy and system level. These include:
The Expectations for the provision of health care services, on the other hand, outline what individual residents should reasonably expect in relation to their personal health care. These include:
In its January 2002 report,(26) the New Brunswick Premier’s Health Quality Council outlined a New Brunswick Health Charter of Rights and Responsibilities, the purpose of which is to set out what New Brunswick residents can expect from the health care system and health care professionals. The Charter, which sets out a number of specific rights and responsibilities at three levels – the individual, the health professional, and the health care system – addresses five broad classes of rights:
The rights encompassed under “access to health services” include the right to:
Responsibilities outlined under access to services include both individual and health system responsibilities. The former include the responsibility to:
The corresponding health system responsibilities include the responsibility to:
The rights under “the making of one’s own decisions” deal with issues such as being informed, refusing treatment, choosing treatment, participating in research, and receiving information about the qualifications and experience of health professionals. The health system’s responsibilities under this category centre on providing information about treatments and procedures and their implications as well as respecting health care decisions. “Good communications and information” covers rights to an explanation of proposed treatments and risks, access to health records, information about new treatment advances, and information on health services. Patients have a corresponding responsibility to ask questions, follow instructions, understand their treatment plan, and request information. Rights under “personal consideration and respect” focus on providing a clean and safe care environment, being treated with dignity and respect, and protecting privacy. The Charter also stresses that patients have a responsibility to collaborate with health care personnel and to be courteous and respectful. Finally, the proposed Charter outlines rights to complain along with a corresponding responsibility on the health system to provide mechanisms to address complaints. The Premier’s Health Quality Council did not address whether the Charter should be entrenched in legislation, noting, however, that it was up to the government to decide whether the Charter should be legislated or made part of public policy. In order to facilitate the rights outlined in the proposed Charter, the Council recommended the creation of an advocate system composed of Health System Advocates to facilitate access and communications. Regional Advocates would be created in each regional health authority along with one Provincial Advocate who would deal with province-wide policy and communications issues. The Health System Advocate system would also address patients’ concerns and complaints of a defined scope.(28) 3. Rights and Entitlements in Relation to Health Care – Policy Proposals a. IRPP Task Force on Health Policy In 2000, the Institute for Research on Public Policy(29) (IRPP) Task Force on Health Policy released a series of recommendations to Canada’s first ministers on reforming Canada’s health care system. Among the recommendations was a suggestion for increasing the accountability of health organizations through mechanisms such as Patients’ Charters and a Health Care Ombudsperson.(30) The IRPP Task Force suggested that Patients’ Charters should be adopted at the provincial level to permit patient entitlements to be adapted to the particular circumstances of each province. In the beginning, charters would focus on a short list of items and not include broad statements dealing with all personal health services.(31) Under the IRPP proposal, health organizations would issue a statement of “patient rights, expectations and responsibilities with regard to the appropriateness, quality and timeliness of care”(32) and report annually on how hospitals and other health care providers were meeting these entitlements. The overriding view was that Patients’ Charters would result in improved health care services. The Task Force argued that an effective Patients’ Charter must be built on the following premises:
The Task Force saw a number of benefits from creating Patients’ Charters. First, they would “refocus the delivery of health care services on the patient and on the quality of these services in each and every community.”(34) An emphasis on outcomes would result in a shift in decision-making to a regionally managed system that could be adapted to meet the needs of particular regions and patients. Second, because they are directed to individual entitlements, Patients’ Charters would focus the measurement of quality on individual contacts with the system rather than on aggregate numbers.(35) Third, Charters would compel governments to allocate greater resources to the health care system in order to live up to the entitlements provided.(36) To overcome barriers imposed by the expense of the litigation, and scepticism about the effectiveness of such charters, the Task Force suggested that an administrative appeals process be established at local and provincial levels, through an official such as an ombudsperson who would monitor the system’s adherence to the principles of Medicare and the patients’ entitlements under provincial charters.(37) New Zealand has legislated rights for consumers of health and disability services in a Code of Health and Disability Services Consumers’ Rights, created in 1996 as a regulation under the Health and Disability Commissioner Act 1994.(38) The impetus for the passage of the Act came from two factors: the widespread view at the time that the law was inadequate to protect consumers of health and disability services; and public concern about the imbalance in power and knowledge between health care professionals and health care consumers. This was documented by a commission of inquiry established by the New Zealand government to investigate allegations relating to inadequate treatment of cervical cancer in an Auckland hospital.(39) The Act’s purpose is “to promote and protect the rights of health consumers and disability services consumers, and, to that end, to facilitate the fair, simple, speedy, and efficient resolution of complaints relating to infringements of those rights” (s. 6). The aim is to achieve this objective through: the Code of Health and Disability Services Consumers’ Rights; the appointment of a Health and Disability Commissioner to investigate complaints against persons or bodies who providing health care or disability services; and the education of health care providers and consumers. 1. The Code of Health and Disability Services Consumers’ Rights The Code of Health and Disability Services Consumers’ Rights(40) sets out ten rights relating to the patient-health care provider relationship. These are:
The Code also outlines compliance requirements for health care providers. Where the rights cannot be met, the onus is on the provider to establish that it was reasonable in the circumstances not to have done so. 2. The Health and Disability Commissioner The Health and Disability Commissioner appointed under the Act has far-reaching powers. The Commissioner, whose initial task was to prepare a draft Code, has ongoing responsibility to review the Code in accordance with the Act. Other responsibilities include promoting the rights of health and disability services consumers, investigating alleged breaches of the Code,(42) and making recommendations for resolving breaches. The Commissioner can also advise the minister responsible for the Act and report on the need for action to protect the rights of health consumers and disability services consumers.(43) The Commissioner has the authority to refer a matter under investigation to the Director of Proceedings, an independent statutory officer under the Act, who can hold proceedings regarding a complaint. Generally, proceedings can be brought before the Complaints Review Tribunal and various health professional disciplinary bodies. The Complaints Review Tribunal has the authority to issue consumer remedies including:
The Act also provides for advocates to assist consumers in resolving their complaints or concerns directly with health and disability service providers. Advocates neither investigate nor make decisions on whether the Code has been breached. They also perform an educational function by promoting awareness of the Code and the Act to consumers and providers. Advocacy services operate independently of the Commissioner, health care providers and disability services providers, but the Commissioner can issue guidelines for the operation of such services.(45) The United Kingdom (UK) introduced a patients’ bill of rights in 1992 when the National Health Service (NHS) Patient’s Charter(46) was implemented to improve the quality of care delivered to patients. Complaints about the NHS had been rising steadily, patients were experiencing long waiting periods for medical services, and concerns were being voiced about the quality of care and the manner in which patients were being treated. The NHS Patient’s Charter(47) was composed of individual rights and service standards (known as expectations). The rights comprised core principles such as access to health care, the receiving of information to make informed choices about medical care, and included the right to:
The Charter standards (expectations) were more specific and sought to address concerns about the quality of health care services and waiting times for certain procedures. These standards included:
The Charter stressed the importance of GPs establishing their own practice charters and for hospitals to set local standards for waiting times. In June 1997, the UK Department of Health commissioned a study to review the existing Patient’s Charter and develop proposals for a new NHS Charter. Overall, the study gave the Charter very low marks. Describing it as a “disconnected ragbag of so-called service rights and aspirations,” the study concluded that the Charter was of limited usefulness.(48) The Charter was criticized on a number of fronts, from the manner in which it was drawn up and implemented to its content. It was described as a top-down initiative which staff saw as a “political” document designed to assuage mounting complaints about health care services. NHS staff believed the Charter engendered a blame culture by giving patients rights without obligations. Critics argued that the Charter encouraged cheating to comply with admission standards. By measuring the process by which patients travelled through the system rather than the clinical outcome or the quality of the care prescribed, all the targets could be met but patients could still be dissatisfied with their level of treatment and care.(49) Despite these criticisms, however, the study found that one of the most important impacts of the Charter was the more consumerist culture it injected into the British health care system. In the end, the study concluded that the NHS would not benefit from the imposition of another national charter and proposed instead that local charters be developed in trusts, primary care groups and other community health services dealing directly with patients.(50) It did not, however, recommend a complete abandonment of national standards, and suggested a national framework containing some minimum national standards that could be included in local charters. In 2001, the Patient’s Charter was replaced by a new NHS document, Your Guide to the NHS.(51) The Guide sets out what patients can expect from the NHS in relation to current and future waiting times for certain kinds of treatment, ambulance arrivals, treatment in hospital emergency departments, and appointments with a GP or a nurse practitioner. For example, by 2004, patients should not have to wait more than four hours in an accident and emergency department from arrival to admission, transfer and discharge. The Guide also provides a care guarantee when a patient’s operation is cancelled on the day of surgery for non-clinical reasons. In this case, the hospital is required to provide another surgery date within 28 days or pay for treatment in a hospital of the patient’s choice. The UK government has also put forward a plan for a Patient Advocacy and Liaison Service under which patient advocates will act as independent facilitators to: (a) handle patients’ complaints about service; and (b) guide patients through the complaints process. An independent Health Service Ombudsman investigates complaints about the NHS.(52) The type of complaints examined include those relating to: poor service or failure to provide a service; allegations that staff did not follow proper procedures or were rude; and complaints about the care received from doctors, nurses and other health professionals. The Australian commonwealth government provides financial assistance to the States and Territories for public hospitals and other health services conditional upon the latter entering into agreements (Australian Health Care Agreements). States and Territories must agree to develop a Charter giving residents various types of information, including the provision of health services, the process for making complaints, and how the complaints will be heard. As a result, States and Territories have developed Public Patients’ Hospital Charters(53) hat include a number of rights, including the right to:
Australia has also developed a Private Patients’ Hospital Charter which sets out guidelines relating to private patients in a public hospital, a private hospital or a day hospital facility and what such patients can expect from doctors, hospitals and health insurance funds. Over the past decade, managed health care through organizations – commonly known as health maintenance organizations (HMOs) – proliferated in the United States as employers and governments sought to contain rising health insurance costs.(54) In their quest to contain costs, managed care organizations have garnered numerous criticisms and complaints. For example, HMOs have been routinely accused of improperly denying coverage or delaying care. As well, surveys have reported patient problems such as difficulty seeing physicians, the refusal to make referrals to specialists, restricted coverage for emergency services, limits on the length of hospital stays and delays, and denial of payment on the grounds that procedures are not medically necessary. In some cases, these actions have resulted in health problems and significant financial costs for patients. In fact, there have been so many complaints and criticisms that governments have felt it necessary to enact laws guaranteeing patients’ rights in managed care situations. State governments were first off the mark in enacting patients’ rights statutes to deal with the managed care industry. Also, a variety of patients’ rights bills have been put before the House of Representatives and the Senate; to date, however, none has become law. A number of these initiatives are discussed below. In 1997, President Clinton created the Advisory Commission on Consumer Protection and Quality of the Health Care Industry and charged it with developing a patients’ bill of rights. Later that year, the Advisory Commission issued the Patients’ Bill of Rights and Responsibilities, which set out seven categories of rights and one set of responsibilities:(55)
In 1998, President Clinton directed the following bodies – the federal Department of Health and Human Services as well as the departments of Labor, Defense and Veterans’ Affairs and the Office of Personnel Management – to bring their health programs, including Medicare and Medicaid, into compliance with the consumer protections proposed in the Commission’s bill by the end of 1999. The U.S. Congress has been debating patients’ rights issues since the mid-1990s. In the 106th Congress, the Senate and the House of Representatives each passed a bill on this subject: the Bipartisan Consensus Managed Care Improvement Act of 1999 (the Norwood-Dingell Bill, H.R. 2723)(60) passed the House of Representatives in October 1999; and Bill S. 1344 passed the Senate in July 1999. However, Congress was unable to reconcile the differences between the two bills. The 107th Congress has also seen patients’ rights proposals. In June 2001, the Senate passed Bill S. 1052, the Bipartisan Patient Protection Act,(61) while the House of Representatives passed a patients’ rights bill, H.R. 2563, in August of the same year.(62) The bills have important similarities. Under both bills:
However, there are also notable differences between the two bills. One key difference relates to the structure of an independent system to review challenges to health care plan decisions. Most states have established an independent review process to review decisions unfavourable to health plan enrollees. H.R. 2563 would have federal review procedures override state review processes while S. 1052 would establish minimum federal standards, but allow states to have their own review programs.(64) Another, and perhaps the most contentious, difference relates to the extent of permissible litigation by enrollees against their health plans. Both bills include provisions that would allow enrollees to sue their health plans, but there are significant differences in the scope of the liability provisions. S. 1052 would allow suits to proceed in state courts under state laws for denial of benefits or quality-of-care issues and in federal court for other matters. H.R. 2563 would also allow suits in state courts but under stricter federal rules relating to burden of proof and damages.(65) The bills also differ on the amount of damages that an enrollee could recover. The Senate bill would allow for the recovery of economic damages (lost wages and medical expenses) and non-economic damages (pain and suffering) without limitation and up to US$5 million in punitive damages in federal suits where it was established that the health plan’s actions were in flagrant violation of an enrollee’s rights and a proximate cause of the enrollee’s injury or death. H.R. 2563, on the other hand, would allow for the recovery of economic damages but would cap non-economic damages at US$1,500,000 and would allow punitive damages up to US$1,500,000 in limited circumstances.(66) Although passed in 2001, these bills have not yet proceeded to a conference committee for reconciliation. However, patients’ rights are expected to be back on the legislative agenda in 2002. State governments were enacting patients’ rights laws well before legislation was placed before Congress. At the state level, two forms of statutes predominate – laws that give patients certain rights in relation to the provision of health care (particularly hospital services), and laws that provide protections for patients in managed care situations. a. Patients’ Rights in Relation to the Provision of Health Care Florida’s Patient’s Bill of Rights and Responsibilities(67) is a representative sample of state laws that establish patients’ rights in relation to the provision of health care services. The Florida law requires health care providers and health care facilities to recognize patients’ rights in the course of medical care. It also requires patients to respect the health care provider’s or health care facility’s right to expect certain behaviour on the part of patients. Under the law, a patient has the right to:
At the same time, the law also outlines certain patient responsibilities, including responsibility for:
b. Patients’ Rights and Protections in Relation to Managed Care Patients’ rights laws in relation to managed care differ across U.S. states; however, a number of common themes run through these initiatives. Typically, patients’ rights initiatives deal with at least some of the following issues: disclosure of information about medical coverage to enrollees; mandated coverage of emergency services; utilization of review/external review relating to the medical necessity of a procedure; continuity of care; access to specialists; physician incentives; protection of the doctor-patient relationship; and health care plan liability. These themes are outlined in more detail below.(68)
In addition to the kinds of individual rights typically included within the scope of patients’ rights, Norway has enacted patients’ rights legislation through The Patients’ Rights Act.(70) The Act includes various rights, including the right to choice of hospital, the right to treatment, and the right to get an evaluation from a specialist within 30 days after receiving a referral from a general practitioner. The Act also sets out rights to:
A “patient ombud” is established to safeguard patients’ rights and interests in relation to health services.(71) A number of countries have developed patients’ bills of rights. In some nations, patients’ rights have been legislated; in others, they have been promulgated in charters as non-binding policy documents. These initiatives often provide for collective rights such as equal access to health care as well as individual rights that pertain to the relationship between patients and health care providers or institutions. Examples of individual rights include: giving consent to treatment, participating in health care decisions, receiving information about treatment options and medical procedures, being assured of privacy and confidentiality, receiving dignified and respectful patient treatment, and having a complaint investigation and resolution process. A 2001 paper(72) notes that a patients’ bill of rights designed to promote understanding and better enforcement of rights in health care services would improve patients’ ability to deal with health care providers. However, the authors point out that such a bill of rights would not address concerns about access to timely care. They envisage an Ontario bill of rights that would include both rights to health care by establishing guaranteed maximum waiting times for health care services along with a Commissioner or Ombudsperson to investigate complaints about access and timeliness as well as rights when receiving health care services.(73) The concept of a patients’ bill of rights is less well developed in Canada than in a number of other countries. Only since the late 1990s have proposals to create such bills in this country been discussed. To date, the majority of Canadian proposals for patients’ bills of rights focus on certain collective and individual rights in relation to the provision of health care services, but have not included waiting time guarantees. One of the most detailed of these initiatives is the proposal put forward in January 2002 by the New Brunswick Premier’s Health Quality Council which sets out a number of specific rights and responsibilities at three levels – the individual, the health professional, and the health care system – and addresses five broad classes of rights. At the federal level, the Private Member’s bill, Bill C-261, outlines a series of collective and individual patients’ rights as well as patients’ responsibilities; the bill proposes to develop these rights through federal-provincial agreements and by making full cash contributions to provinces under the Federal Provincial Fiscal Arrangements Act conditional upon the conclusion of federal-provincial agreements relating to patients’ rights. Patients’ bills of rights may well be part of the future landscape of the Canadian health care system. Whether developed through legislation or as statements of government policy, they can serve as an important tool for recognizing patients’ rights, defining health care objectives, and emphasizing the complementary nature of the rights and responsibilities of patients and health care providers. (1) In the United Kingdom, the National Health Service (NHS) patients’ guide (entitled Your Guide to the NHS) has replaced the Patients’ Charter. This development is discussed in Section C. (2) Canada, Royal Commission on Health Services, Queen’s Printer, 1964, Vol. 1, pp. 11-12. (3) Ibid., p. 11. (4) Ibid. (5) Ibid. (6) The services would include: medical services; dental services for children, expectant mothers, and public assistance recipients; prescription drug services; optical services for children and public assistance recipients; prosthetic services; and home care services. (7) Ibid. (8) R.S.C. c. C-6, section 3. (9) Ibid., section 7. (10) Bill C-261, An Act to establish the rights of patients in relation to health, treatment and records, First Session, Thirty-seventh Parliament, 49-50 Elizabeth II, 2001. This bill was originally introduced on 7 February 2000 as Bill C-417 but died on the Order Paper with the dissolution of Parliament for the 27 November 2000 federal election. (11) Standing Senate Committee on Social Affairs, Science and Technology, The Health of Canadians – The Federal Role, Volume Four – Issues and Options, September 2001. (12) Ibid., p. 47. (13) Legislative Assembly of Alberta, Hansard, 24th Legislature, 2nd Session, 28 January 1998. (14) Bill 201 was defeated on 4 February 1998. (15) Ontario, Ministry of Health and Long-Term Care, Ontario Budget 2000. (16) Bill 41, Patients’ Bill of Rights, 1996 (Mrs. Caplan); Bill 50, Health Care Accountability and Patients’ Bill of Rights Act, 1998 (Mrs. Boyd); and Bill 18, Health Care Accountability and Patients’ Bill of Rights Act, 1999 (Mrs. Boyd). (17) An Act Respecting Health Services and Social Services, 1991, R.S.Q. c. S-4.2. (18) Ibid., sections 4-10. (19) Ibid., section 13. (20) Ibid., section 56. (21) Chapter 43, Statutes 2001, An Act respecting the Health and Social Services Ombudsman and amending various legislative provisions, Royal Assent, 11 December 2001, in force 1 January 2002, except for certain sections. (22) Ibid., section 19. (23) Nova Scotia, Provincial Health Council, “Expectations for Health and Health Care in Nova Scotia,” 18 May 2000. (24) Ibid. (25) Ibid. (26) New Brunswick Premier’s Health Quality Council, Health Renewal: Report from the Premier’s Health Quality Council, January 2002. (27) The proposed Charter is outlined on pages 91-95 of the Report from the Premier’s Health Quality Council. (28) Ibid., p. 85. (29) The IRPP is an independent, national non-profit public policy research organization founded in 1972. (30) The Institute for Research on Public Policy, IRPP Task Force on Health Policy Recommendations to First Ministers, 2000, p. 22. (31) Ibid., p. 27. (32) Ibid., p. 22. (33) Ibid., p. 27. (34) Ibid., p. 26. (35) Ibid., p. 27. (36) Ibid., p. 28. (37) Ibid. (38) Statutes 1994, No. 88. (39) S. Cartwright, The Report of the Cervical Cancer Inquiry, 1998. (40) New Zealand, The Code of Health and Disability Services Consumers’ Rights. (41) One of the features of the right to have services that comply with legal, professional, ethical and other relevant standards is that it allows the standards of professional and other bodies to be enforced through the Code by the Health and Disability Commissioner. (42) Under section 14(1)(e) of the Act, the Commissioner can investigate, on complaint or on the Commissioner’s own initiative, any action that is or appears to be in breach of the Code. (43) Health and Disability Commissioner Act 1994, s. 14. (44) Ibid., section 54. (45) Ibid., section 30. (46) National Health Service, Patient’s Charter. (47) England, Scotland, Wales and Northern Ireland have separate charters. The information in this paper is drawn from the charter for England. (48) Greg Dyke, The New NHS Charter – A Different Approach, Report on the new NHS Charter, December 1998. (49) Ibid., pp. 10-11. (50) Ibid., p. 16. (51) United Kingdom, National Health Service, Your Guide to the NHS. Patient’s Charters continue to apply in Wales, Scotland and Northern Ireland. (52) For additional information, see the Health Service Ombudsman's website. (53) Examples include the Northern Territory Public Hospital Charter and the South Australia Charter for Public Health System Consumers. (54) Jill A. Marsteller and Randall R. Bovbjerg, “Federalism and Patient Protection: Changing Roles for State and Federal Government,” August 1999, Urban Institute, p. 3. (55) U.S. Department of Health and Human Services, HSS Fact Sheet, The Patients’ Bill of Rights in Medicare and Medicaid, 12 April 1999. (56) Patients have the right to receive accurate, easily understood information to assist them in making informed decisions about their health plans, facilities and professionals. (57) Health plans should pay for emergency services when a patient has: symptoms that a “prudent layperson” would reasonably expect to place the patient’s health in serious jeopardy; serious impairment to bodily functions; or serious dysfunction of any bodily organ or part. (58) Patients have the right to considerate, respectful care and must not be discriminated against in the marketing or enrolment or in the provision of health care services based on race, ethnicity, national origin, religion, sex, age, current or anticipated mental or physical disability, sexual orientation, genetic information, or source of payment. (59) Patients have the right to a fair and efficient process for resolving differences with their health plans, health care providers and health care institutions, which includes an independent system of external review. (60) H.R. 2723 was folded into a health “tax and access” bill (H.R. 2990) and passed the House of Representatives as part of H.R. 2990. (61) Bill S. 1052 was sponsored by Senators McCain (R-Arizona), Kennedy (D-Massachusetts) and Edwards (D-North Carolina). (62) Bill H.R. 2563 was sponsored by Representatives Ganske (R-Iowa), Dingell (D-Michigan) and Norwood (R-Georgia). (63) Stephanie Lewis, A Guide to the Federal Patients’ Bill of Rights Debate, prepared for The Kaiser Family Foundation, August 2001, p. 4. (64) Ibid., p. 6. (65) Ibid., p. 7. (66) Ibid., pp. 8-9. (67) Florida Statutes, Title XXIX, Chapter 381.026. (68) The themes listed have been summarized from: Douglas A. Hastings, “Patient Rights meet Managed Care: Understanding the Underlying Conflicts,” reprinted from Journal of Health Law, 1999, pp. 4-7. (69) For an overview of state liability laws, see the paper entitled Key Characteristics of State Managed Care Organization Liability Laws: Current Status and Experience, August 2001, prepared by Patricia Butler for The Henry J. Kaiser Family Foundation. (70) The Patients’ Rights Act, Act of 2 July 1999, no. 63 relating to Patients’ Rights. (71) World Health Organization, European Observatory on Health Care Systems, Health Systems in Transition: Norway, 2000. This document gives a detailed overview of the health care system in Norway. (72) Colleen Flood and Tracey Epps, “Can a Patients’ Bill of Rights Address Concerns About Waiting Lists?” Draft Working Paper, Health Law Group, Faculty of Law, University of Toronto, 9 October 2001. (73) Ibid., p. 23. |