Waiting for Health Care:
What Role for a Patients’ Bill of Rights?
Colleen M. Flood and Tracey Epps*
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 gen6ral satisfaits de la
qualit6 des soins de sante qu’ils reqoivent, plusieurs
sont n6anmoins de plus en plus pr6occup6s par l’acces
h ces services et, en particulier, par les temps d’attentes
pour les traitements. Ces pr6occupations nourrissent
depuis quelques ann6es un mouvement croissant en
faveur d’une r6forme du syst~me de sant. L’un des
projets de r6forme pr6sentement sous 6tude, tant au
niveau f6d6ral que provincial, est la r6daction d’une
charte des droits des patients qui conf6rerait certains
droits A tous les usagers du r6seau public de la sant6.
les auteures considerent
Dans cet article,
laquelle
la perception
tendent A augmenter. Elles expliquent
les
m6rites d’une charte des droits des patients et se
demandent si une telle r6forme repondrait aux attentes
des Canadiens envers le r6seau public de la sant6. Les
auteures commencent en soulignant les pr6occupations
des Canadiens quant A l’acces aux soins de sant6 et en
temps
discutant
d’attente
la
distinction entre les droits dans les soins de sant6 et les
droits aux soins de sant6 et dans quelle mesure ces
differents droits peuvent
‘tre prot6g6s au Canada.
Enfin, les auteures proposent une revue d6taillee de
l’exp6rience 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 ofi l’acces rapide aux soins de sant6 dans
un d6lai raisonnable a 6t6 reconnu dans leurs chartes
respectives des droits des patients et examinent les
m6canismes cr66s pour faire observer ce droit. Les
auteures terminent en sugg6rant, sur la base des leqons
tir6es des autres juridictions examin6es, des modeles
potentiels pouvant garantir les droits des patients au
Canada.
selon
les
. Colleen M. Flood, Canada Research Chair in Health Law and Policy, Associate Professor, Faculty
of Law, University of Toronto. Tracey Epps, B.A.-LL.B. (Hons.) (Auckland), LL.M. (Tor.), S.J.D.
Candidate, Faculty of Law, University of Toronto. An earlier version of this paper is available on the
Web site for the Institute for Research on Public Policy (http://www.irpp.org) in Policy Matters 3:12
(November 2002). We would like to thank the Institute for Research on Public Policy for helping to
fund the research for this project. We would also like to thank Catherine Regis for her work as a
research assistant. All errors and omissions remain ours.
McGill Law Journal 2004
Revue de droit de McGill 2004
To be cited as: (2004) 49 McGill L.J. 515
Mode de r6f6rence: (2004) 49 R.D. McGill 515
MCGILL LAW JOURNAL / REVUE DE DROIT DE MCGILL
[Vol. 49
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.
4. Conclusion: A Patients’ Bill of Rights in Health Care?
Internal Complaints Mechanisms
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
517
520
523
524
525
527
529
529
530
531
532
534
536
536
538
541
543
547
548
549
550
2004] C.M. FLOOD& T EPps- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS?
517
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.’ This was followed by the final report of Roy Romanow’s
Commission on the Future of Health Care in Canada in November 2002. The Kirby
and Romanow reports followed closely upon the heels of reports commissioned by
various provincial governments, including Alberta,3 Saskatchewan,4 New Brunswick,’
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
1 Canada, Standing Senate Committee on Social Affairs, Science and Technology, The Health of
Canadians-The Federal Role: Recommendations for Reform, vol. 6 (Ottawa: Government of
Canada, 2002) (Chair: Hon. Michael J.L. Kirby) [Kirby report].
2 Commission on the Future of Health Care in Canada, Building on Values: The Future of Health
Care in Canada (Ottawa: Government of Canada, 2002) (Commissioner: Roy J. Romanow)
[Romanow report].
3 Alberta, Premier’s Advisory Council on Health, A Framework for Reform: Report of the Premier’s
Advisory Council on Health (Edmonton: Government of Alberta, 2001) (Chair: Rt. Hon. Don
Mazankowski). Alberta had earlier introduced patients’ rights legislation: Bill 201, Alberta Patients’
Bill of Rights, 2d Sess., 24th Leg., Alberta, 1998, was defeated on 4 February 1998.
4 Saskatchewan, Commission on Medicare, Caring for Medicare: Sustaining a Quality System
(Regina: Government of Saskatchewan, 2001) (Commissioner: Kenneth J. Fyke).
5 New Brunswick, Premier’s Health Quality Council, Health Renewal: Report from the Premier’s
Health Quality Council (Fredericton: Government of New Brunswick, 2002) (Chair: Michel C.
Leger).
6 Quebec, Commission of Study on Health and Social Services, Emerging Solutions: Report and
Recommendations (Quebec City: Government of Quebec, 2001) (Chair: Michel Clair).
MCGILL LAW JOURNAL / REVUE DE DROIT DE MCGILL
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legislation setting out patients’ rights7 and has recently enacted new legislation that
gives the ombudsperson greater power to enforce those rights.’ 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.”‘” Legislation is under development” 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-h-vis waiting times as a reform option worthy of serious
consideration, 3 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. 4 The
Kirby and Romanow reports were followed by the First Ministers’Accord on Health
Care Renewal in February 2003.'” 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,
7 An Act respecting Health services and social services, R.S.Q. c. S-4.2 [Health Services Act].
8 An Act respecting the Health and Social Services Ombudsman, R.S.Q. c. P-31.1 [Ombudsman
Act].
9 Bill 60, Health Charter of Rights and Responsibilities Act, 5th Sess., 54th Leg., New Brunswick,
2003 (second reading 9 April 2003). The charter would give residents of New Brunswick the right: to
timely access to health care services; to receive relevant health care information; to make informed
health care decisions; to safe, comfortable, and considerate attention; and to the investigation of
complaints. It would also place responsibilities on residents, including the responsibility to use health
care services in a reasonable manner and to learn about and make health lifestyle choices. The charter
would see the appointment of a Health and Wellness Advocate to, among other things, advise and
assist individuals in the exercise of their rights and the performance of their responsibilities under the
act.
10 Hon. Hilary M. Weston, Lieutenant Governor of the Province of Ontario, “Speech from the
Throne on the Opening of the First Session of the Thirty-Seventh Parliament of the Province of
Ontario” (21 October 1999), online: Legislative Assembly of Ontario
11 Telephone conversation with Kathie Clarke of the Ontario Ministry of Health and Long-Term
Care (23 August 2002).
12 See e.g. Manitoba Health, Quality Health Care for Manitobans: The Action Plan for the New
Millennium (Winnipeg: Manitoba Health, 1999).
13 Kirby report, supra note 1.
14 Romanow report, supra note 2 at xxiv.
15 Canada, 2003 First Ministers’ Accord on Health Care Renewal (5 February 2003), online:
Canadian Intergovernmental Conference Secretariat
2004] C.M. FLOOD& T EPPS-WHAT ROLE FORAPATIENTS’BILL OF RIGHTS?
519
patient-centred and safe.”‘ 6 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″7 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.’9 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.2″ 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.2
A patients’ bill of rights is obviously a popular reform proposal, but would it
actually address Canadians’ concerns about medicare? If reform of publicly-funded
medicare does not meet those concerns, the pressure for change will continue
unabated and will, in our opinion, undoubtedly result in increased pressure for greater
16 Ibid. at 1.
“7 (U.K.), 30 & 31 Vict., c. 3, reprinted in R.S.C. 1985, App. 11, No. 5.
18 IBM Business Consulting Services, HealthInsider: Survey No. 8, Fall/Winter 2002 (Toronto:
IBM Business Consulting Services) [Survey No. 8].
19 Ibid.
20 Ibid.
21 Ibid.
MCGILL LAW JOURNAL / REVUE DE DROIT DE MCGILL
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private options. We argue that Canadians are very concerned about access to health
care services and, in particular, growing waiting times for treatment. This paper
explores the prospects of a patients’ bill of rights addressing concerns about waiting
times and,
the experiences of jurisdictions that have
implemented patients’ rights
legislation. Looking at the experiences of other
jurisdictions provides a basis for examining the effectiveness of patients’ bills of
rights and potential models that would be appropriate for Canada.
in so doing, examines
We begin by examining Canadians’ concerns with respect to medicare and argue
that Canadians’ concerns regarding timeliness in treatment (i.e., waiting times) must
be taken seriously. We then explain the distinction between rights in health care and
rights to health care and the extent to which these different types of rights are
protected in Canada through the common law, self-regulation, and otherwise. We then
turn to examine the experiences of Quebec, the United States, New Zealand, the
United Kingdom, Spain, Sweden, and Italy in protecting rights in and to health care
through the mechanism of a patients’ bill (or charter) of rights. Our particular focus is
upon those countries that have used a patients’ bill of rights as a tool to address
concerns about waiting lists and times.
I. What Are Canadians’ Concerns?
Canadians who use the health care system are generally very satisfied with the
care they receive but extremely concerned about waiting times for treatment; many
perceive waiting times to be getting longer.22 A report released in mid-2002 by
Statistics Canada noted the following:
An estimated 4.3 million Canadians reported difficulties accessing first contact
services and approximately 1.4 million Canadians reported difficulties
accessing specialized services such as specialist visits, non-emergency surgery
(planned surgery, excluding dental surgery) and selected diagnostic tests (non-
emergency MRis, CT scans, or angiographies). While the type of barrier varied
by time of day and service type, lengthy waits and problems contacting a
22 See e.g. PricewaterhouseCoopers, HealthInsider: Survey No. 4, Fall/Witer 2000 (Toronto:
PricewaterhouseCoopers). The HealthInsider is a national syndicated survey of Canadians’ opinions
about health care. In this issue, it was reported that while “the majority (58%) [of Canadians] reported
that the Canadian health care system was sound with few or minor changes needed … ” the remainder
believe the health care system requires major changes (at 54). In Survey No. 8, supra note 20 at 57,
Healthinsider reported that compared to five years ago, 62 per cent of respondents thought that the
waiting time for medical services was either slightly or much longer, with about one-third indicating
they had become much longer. See also Nadeem Esmail & Michael Walker, Waiting Your Turn:
Hospital Waiting Lists in Canada, 13th ed. (Vancouver: Fraser Institute, 2003), online: Fraser Institute
the
Fraser Institute data has been criticized on a variety of methodological grounds-for instance,
because it surveys individual physicians and thus is subject to recall bias, has a small response rate,
and is limited by the use of different respondents yearly.
2004] C.M. FLOOD& T EPPS-WHATROLEFORAPATIENTS’BILL OF RIGHTS? 521
health care provider were frequently cited by those who experienced difficulty
accessing care. 23
The report went on to note that “[a]mong those waiting for specialized services,
between 21.7 per cent of those who waited for non-emergency surgery and 26.7 per
cent of those who waited for specialist visits indicated that their waiting time was
unacceptable. They reported longer waits, between three and six times as long as
those who reported that their waiting time was acceptable.” 24 A November 2002
national survey of Canadians found that forty-six per cent of Canadians think that the
quality of health care has declined over the last five years; one of the top perceived
reasons given for this decline, along with funding cutbacks and doctor and nurses
shortages, was longer waiting times. 5 The same survey found that sixty-two per cent
of Canadians thought that waiting times were longer compared to five years ago.26
A number of policy analysts point out that there is no evidence about the extent of
the waiting time problem and argue that Canadians’ concerns are fuelled by an
irresponsible media pursuing juicy human interest stories and by self-interested
physician groups.27 Yet Canadians remain unfazed by academic skepticism and
unpersuaded that waiting times are not really a problem.28 Canadians’ concerns about
waiting for care are five-fold:
1. Timeliness of treatment has the potential to have a significant impact on the
chances of a successful cure or even survival.
2. A patient waiting for treatment may experience pain and a significant decline in
his or her quality of life (e.g., patients needing hip replacements).
23 Statistics Canada, “Key Findings” in Access to Health Care Services in Canada, 2001, online:
[Statistics
Canada
Statistics
Canada, “Key Findings”].
24 Ibid.
25 HealthInsider: Survey No. 8, supra note 18.
26 ibid.
27 See e.g. Steven Lewis et al., “Ending Waiting-List Mismanagement: Principles and Practice”,
Commentary (2000) 162 CMAJ 1297. For a discussion of the various factors that contribute to
waiting lists, see S.E.D. Shortt, “Waiting for Medical Services in Ontario: Clarifying the Issues in a
Period of Health Reform” (Discussion paper for the Atkinson Charitable Foundation, February 2000),
online: University of Toronto
28 See e.g. Shelley Martin, “Almost I in 2 Canadians Says Health System Needs Major Surgery”
(2001) 165 CMAJ 465. Martin reports that a survey carried out by PricewaterhouseCoopers found
that 47 per cent of respondents said that the quality of health care had declined in the past five years,
with just over one-fifth of the 47 per cent blaming longer waiting times. See also Rex Murphy,
“What’s Your Prescription for Canada’s Health Care System?”, Canadian Broadcasting Corporation
(Broadcast from Red Deer, Alberta on 13 February 2000), online: CBC.ca
excruciating, anguishing, and in some sense a nullification of the boast that our health system is the
best in the world.”
522
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3. Delays in receiving care can result in private costs in terms of lost days of work,
lost income, and reduced productivity–costs that do not have to be absorbed by
provincial health ministries.
4. Patients waiting for treatment and their families and friends may experience great
psychological stress. For example, a study of cancer patients in Ontario found
that cancer patients experience major psychological stress as a result of delays in
diagnosis or treatment.29 The Statistics Canada report mentioned above found that
one in five Canadians “who waited for specialized services indicated that waiting
for care affected
their lives. Most of these individuals reported that they
experienced worry, stress and anxiety, pain or diminished health as a result of
waiting for care.”30
5. Waiting lists are unfairly managed, and those with contacts (e.g., friends and
relatives who work within the health care system) are able to jump the queue and
have their needs met first or otherwise, they are able to purchase care in the US.
The division between academic and public opinion on the impact of waiting for
care is due, at least in part, to the importance each group attaches to linking treatment
to measurable health care outcomes. Most prominent health policy analysts in Canada
support
the concept of “evidence-based medicine”. Evidence-based medicine,
grounded in health economics and health services research, posits that governments
should only fund health care services that have a measurable impact on health care
outcomes. “1 Many health policy analysts will therefore concede that timeliness is of
relevance, but only insofar as it impacts on the first of the Canadian’s concerns (i.e.,
significantly affecting an individual’s health). Citizens and patients, on the other hand,
want to achieve positive health outcomes but are also concerned with the process of
care and how long it takes to have their needs addressed. Neither the process of care
(e.g., being treated with respect) nor the speed with which care is supplied may be
readily measurable in terms of health care outcomes.
In its 2002 report, Kirby’s senate committee recommended a health care
guarantee where, for each type of major procedure or treatment, a maximum needs-
based waiting time would be established and made public.3 2 If this maximum time
were exceeded, the insurer (the government) would pay for the patient to seek the
29 See Marko Simunovic et al., “A Snapshot of Waiting Tunes for Cancer Surgery Provided by
Surgeons Affiliated with Regional Cancer Centres in Ontario” (2001) 165 CMAJ 421.
30 See Statistics Canada, “Key Findings”, supra note 23.
31 See Robert G Evans & G L. Stoddart, “Producing Health, Consuming Health Care” in Robert G
Evans, Morris L. Barer & Theodore R. Marmor, eds., Why Are Some People Healthy and Others
Not?: The Determinants of Health of Populations (New York: Aldine De Gruyter, 1994) 27 at 38. See
also Douglas E. Angus et al., Sustainable Health Care for Canada: Synthesis Report (Ottawa:
Queen’s-University of Ottawa Economic Projects, 1995) for the argument that, as there is little
evidence that many health care services have any impact on health, cutbacks in public spending can
occur without impact on Canadians’ health.
32 Kirby report, supra note 1 at 117.
2004] C.M. FLOOD & T Epps- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 523
procedure or treatment immediately in another jurisdiction, including, if necessary,
another country (e.g., the United States). In his final report, Roy Romanow, on the
other hand, did not favour the introduction of waiting time guarantees, stressing the
difficulties that would ensue in determining what the appropriate guarantee should be
and what the consequences would be if the health care system were unable to meet the
time limits set in a guarantee.33 Mr. Romanow suggested instead that efforts be
directed to systematically gathering
information about health system performance that allows us to document where
and why
there are bottlenecks in the system so that we can target our
prescriptive efforts. If the problem is a lack of doctors, hospital beds, or MRI
capacity, then we should invest accordingly. Or if the problem is that we lack a
centralized system for channelling patients to providers or institutions that have
the smallest wait times, then let’s do that.3 4
lists and
times and systematically addressing
The problem of waiting lists is not new, however, and governments and institutions
have long had the option to follow Romanow’s recommendations for gathering better
information about waiting
the
problems-but they have not. We believe that this failure to act is due to insufficient
direct incentives for decision-makers to rigorously address the problem of waiting
lists, particularly as there is always the opportunity for provincial governments to
blame the federal government’s underfunding for deficiencies in their health care
systems. We discuss below the prospects for a waiting list guarantee as recommended
by the senate committee to form part of a patients’ bill of rights and to address the
present lack of incentives in the system that deal with waiting list and time issues.
II. Rights in and Rights to Health Care
Given that access to, and timeliness in, treatment is a serious issue for Canadians,
would a patients’ bill of rights effectively address this concern? Let us begin by
clarifying what we mean by patients’ rights. There are two broad categories of
patients’ rights. Firstly, rights in health care arise out of the clinical encounter, that is,
the actual delivery of care by doctors, nurses, and other health care providers.
Secondly, there may be rights to access health care services, such as the rights of
patients vis-A-vis public and private insurers to have certain treatments funded and/or
delivered in a timely fashion.35 Historically, patients’ bills of rights have been directed
at rights in health care, that is, directed at the rights of patients vis- -vis doctors,
33 “The Romanow Report: One Year Later” The Atkinson Letter (November 2003) 1 at 5, online:
The Atkinson Foundation
‘ Ibid.
35 The history of the establishment of both rights “in” health care and rights “to” health care is
discussed by Paul Starr, The Social Transformation of American Medicine (New York: Basic Books,
1982) at 388-93. In both the United States and Canada, rights “in” health care came about after rights
“to” health care in the early 1970s.
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nurses, and other professionals in a clinical encounter. In order to address Canadians’
key concerns about their health care system, however, a patients’ bill of rights ought
to recognize both rights in health care and rights to health care. Specifically, a
patients’ bill of rights would need to focus on both the clinical relationship and
entitlement relationships-those between patients/citizens and health care insurers,
payers, and/or managers (e.g., ministries of health, regional health authorities,
community care centres, private insurers, etc.)
A. Rights in Health Care
In some areas, provinces have legislated specifically for patients’ rights. In
Ontario, for example, the Long-Term Care Act, 1994 (which governs the provision of
services to patients in the community) sets out a “bill of rights” for people receiving
community services. 6 The rights include: the right to be dealt with in a courteous and
respectful manner and to be free from mental, physical, and financial abuse by the
service provider; to be dealt with by the service provider in a manner that respects an
individual’s dignity and privacy and that promotes an individual’s autonomy; to give
or refuse consent to the provision of any community service; and to raise concerns or
recommend changes in connection with the community service provided to him or her
and in connection with policies and decisions that affect his or her interests, to the
service provider, government officials, or any other person, without fear of
interference, coercion, discrimination, or reprisal.
The common law also recognizes certain rights in health care. These rights
include the right to give informed consent,37 to confidentiality,” to have access to
one’s own medical records, 9 and to receive treatment that is provided with a
reasonable degree of care.’ Enforcement of these kinds of legal rights is discussed
36 S.O. 1994, c. 26, s. 3.
37 The common law provides that medical intervention may only be provided where the consent of
the individual to be treated has been obtained: Schloendorff v. New York Hospital, 211 N.Y. 125, 105
N.E. 92 (N.YC.A. 1914); Pratt v. Davis, 118 IM. App. 161 (1905); Malette v. Shulman (1990), 72
O.R. (2d) 417, 37 O.A.C. 281. The patient must be given the information that a reasonable or prudent
person in the patient’s circumstances would require in order to exercise a choice among feasible options
that accord with his or her own wishes: Reibl v. Hughes, [1980] 2 S.C.R. 880, 114 D.L.R. (3d) 1.
38 The common law places a duty on physicians to respect a patient’s privacy and maintain
information given in confidence: Mclnerney v. MacDonald, [1992] 2 S.C.R. 138, 93 D.L.R. (4th) 415.
39 ibid.
40 In a medical negligence claim the plaintiff must prove that there was a duty of care, that the duty
of care was breached, and that there was a causal link between the breach and the injury. This test has
been stated as follows: “Every medical practitioner must bring to his task a reasonable degree of skill
and knowledge and must exercise a reasonable degree of care. He is bound to exercise that degree of
care and skill which could reasonably be expected of a normal, prudent practitioner of the same
experience and standing … ” (Crits v. Sylvester, [1956] O.R. 132, 1 D.L.R. (2d) 502 at 508 (Ont.
C.A.), aff’d [1956] S.C.R. 991, 5 D.L.R. (2d) 601). In certain jurisdictions, some of these rights are
also recognized by statute. See e.g. the Ontario Health Care Consent Act, S.O. 1996, c. 2, Sch. A,
which sets out the requirements for a valid consent.
2004] C.M. FLOOD& T EPPS- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 525
below. 41 Apart from legal rights provided explicitly by statute and through the
common law, various professional colleges (physicians, nurses, etc.), empowered by
provincial legislation, establish codes of ethics and may discipline members of their
respective professions who do not comply. Codes of ethics, in addition to recognizing
many legal rights, also often recognize rights in health care of a more intangible
nature, such as the right of a patient to be treated with respect and dignity. However,
codes of ethics usually describe duties on the part of health professionals rather than
rights accorded to patients.42 We discuss enforcement by professional colleges further
below.
43
1. Self-Regulation
All provincial governments have granted self-regulatory status to the medical
professions, 44 empowering them to control entry to the professions, to regulate quality,
and to ensure that members adhere to standards of professional conduct. 45 This form
of regulation is justified on the basis that health professionals are more likely to
comply with standards and disciplinary procedures that are administered by their own
qualified peers.’ But self-regulation, as a form of regulation, is increasingly criticized
for failing to protect the public from harm.47 In recent years, there have been
increasing reports of a “dramatic erosion in the public’s confidence in professional
self-regulation. ’48 Self-regulating professions are more frequently accused of having a
conflict of interest and “an inappropriate unwillingness to report or act upon the
incompetent or unethical behavior of colleagues.”49 Another criticism made of self-
41 See Part ll.A.2. (“Civil Liability”), below.
42 See e.g. Canadian Medical Association, Code of Ethics (Ottawa: The Association, 1990).
41 See Part I.A. 1. (“Self-Regulation”), below.
44 The regulation of occupations and professions is a provincial responsibility under subsection
92(13) of the Constitution Act, 1867, supra note 17.
45 See, in Ontario, the Regulated Health Professions Act, 1991, S.O. 1991, c. 18.
46 For a discussion of self-regulation, see Linette McNamara, Erin Nelson & Brent Windwick,
“Regulation of Health Care Professionals” in Jocelyn Downie, Timothy Caulfield & Colleen M.
Flood, eds., Canadian Health Law and Policy, 2d ed. (Markham: Butterworths, 2002) 55 at 73-80.
For a discussion of different models of self-regulation, see Margot Priest, “The Privatization of
Regulation: Five Models of Self-Regulation” (1997-98) 29 Ottawa L. Rev. 233.
47 For example, over 300 submissions were submitted to the Ontario Ministry of Health and Long-
Term Care during the course of a review of the Regulated Health Professions Act, supra note 45, by
the Health Professions Regulatory Advisory Council in October 1999. A great number of the
submissions expressed concern about the ability of regulated professions to protect the public from
harm. As the extracts were viewed on an anonymous basis, it is not possible to give precise references
for each submission; however, the extracts are on file with the authors.
48 Timothy Stoltzfus Jost, “Oversight of the Quality of Medical Care: Regulation, Management, or
the Market?” (1995) 37 Ariz. L. Rev. 825 at 835.
49 Manitoba Law Reform Commission, Discussion Paper: The Future of Occupational Regulation
in Manitoba (Winnipeg: Law Reform Commission, 1993) at 42. In Ontario, the Health Professions
Appeal and Review Board (“HPARB”) deals with reviews of Complaints Committees’ decisions
(such committees being established by the various professional colleges) under the Regulated Health
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regulatory systems is that many patients do not know where to make complaints or
about what they are entitled to complain.5″ Even when complaints are made, a recent
survey shows that a large percentage of Canadians who had lodged a complaint
against a health care provider were not satisfied with the attention it was given. 1
A complex interaction of decisions goes into ensuring safety and the delivery of
high quality care. Mistakes made by doctors or nurses are often only part of the
problem. An important contributing factor is the quality of management within a
system. The vital
reporting and
communications systems has been demonstrated by high-profile tragedies, such as the
deaths of twelve infants in the Winnipeg pediatric-cardiac program52 and the deaths of
twenty-nine children at the Bristol Royal Infirmary in the UK.53 Quality of care is also
importance of management,
in particular,
Professions Act, supra note 47. The HPARB was established pursuant to the Ministry of Health
Appeal and Review Boards Act, 1998, S.O. 1998, c.18, Sch. H, ss. 1-4. The HPARB does not
investigate complaints, but will review whether an investigation by a Complaints Committee was
adequate and whether the decision reached was reasonable. The HPARB has an entirely lay
composition and its independent review of the decision-making process provides some comfort, but it
is only useful to the extent that complaints are made in the first instance, and it does not fully address
the issue of the public’s lack of confidence in self-regulatory systems.
50 A study carried out by PricewaterhouseCoopers in 1999 found that 38 per cent of people
surveyed were “not at all certain” about where to launch a complaint regarding sexual misconduct by
a health professional: PricewaterhouseCoopers, Evaluation of the Effectiveness of the Health
Professional Colleges’ Complaints and Discipline Procedures with Respect to Professional
Misconduct of a Sexual Nature and Status of the Colleges (Toronto: PricewaterhouseCoopers, July
1999). A more recent national survey of Canadians by IBM Business Consulting Services found that
when asked where they thought they could lodge a complaint about the health services they had
received, almost four in ten Canadians said they did not know. Survey No. 8, supra note 18. This
contrasts, for example, with the code of patients’ rights in New Zealand, where the Health and
Disability Commissioner has taken extensive action to advertise the code and the related complaints
procedure, and to educate the public on how to make a complaint, including posters and brochures in
doctors’ waiting rooms and hospital waiting rooms as well as media advertising. The case of New
Zealand is discussed below, in Part II.C.
SI Survey No. 8, ibid.
52 Associate Chief Judge Murray Sinclair, led a three-year inquest, from 1995 to 1998, into the
deaths of 12 infant cardiac patients in Winnipeg. He found that the program was inadequately
supervised; there was a quality-assurance and monitoring failure at the hospital; nurses’ legitimate
concerns were not taken seriously and the hospital did not provide an appropriate standard of care.
“Sinclair ruled that 5 of the deaths at the Winnipeg Health Sciences Centre in 1994 involved some
form of mismanagement, surgical error or misadventure, and were at least possibly preventable. He
also ruled that another 3 infants might have lived had they been referred to a larger hospital for
treatment, that 3 deaths could not be explained and that only 1 death had an acceptable explanation”
(Barbara Sibbald, “Winnipeg Inquest Recommendation Could Leave Young MDs in Lurch, Expert
Wams” (2001) 164 CMAJ 393 at 393).
53 An inquiry into the deaths “concluded that a ‘poisoned’ atmosphere between managers, surgeons,
anaesthetists and nurses led to a ‘Greek tragedy’ of events in which problems were neither identified
nor resolved. The hospital’s cardiac unit was described as a ‘closed world’ in which those who raised
concerns were ignored and later threatened” (Felicity Morgan, “Children Perished in ‘Culture of
Secrecy’; Bristol Royal Infirmary Inquiry: Report Makes Nearly 200 Recommendations” Western
Mail (19 July 2001) 5 at 5).
2004] C.M. FLOOD & T Epps- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS?
527
indirectly linked to resource allocation decisions made by Health Canada, provincial
ministries of health, private insurers, and regional health authorities. Self-regulation
does nothing to ensure the competence of these kinds of decision-makers, and the
professional colleges only have the power to investigate the actions of individual
members of their professions as opposed
to the actions of hospitals, other
institutions,” or health care funders and/or managers.
2. Civil Liability
injuries
in New York
The threat of medical malpractice litigation ostensibly provides incentives to
health professionals to provide care of an adequate quality. The incentive structure,
however, is far from perfect, given evidence that a great many incidences of
malpractice go unchallenged in the courts. In the famous Harvard study in 1991,” the
researchers reviewed medical records from over 30,000 hospital discharges and 3,500
malpractice claims in New York. The researchers found that there were 7.6 times as
many injuries as there were claims. But it was the matching of specific claims to
specific
troubling relationship between
malpractice claims and injuries into sharp relief: on the one hand, only two per cent of
apparently negligent injuries resulted in claims, but on the other hand, only seventeen
per cent of claims appeared to involve a negligent injury. These results have been
replicated in other studies.56 In other words, many legitimate claims are not made, and
many of the claims made are not legitimate. Notwithstanding this evidence (albeit
from the US), Canada’s Prichard report in 1990 concluded that on balance, the threat
of medical malpractice claims contributes to improving the quality of health care
provided and reducing the frequency of avoidable health care injuries in Canada.57
Prichard also stressed, however, that efforts must be made to increase and improve
redress mechanisms, particularly complaint and discipline procedures.58
that threw
the
One in twenty-five Canadian physicians was named in a new legal action in 2000,
and the number of malpractice cases proceeding to trial doubled between 1995 and
1999.”9 Ironically, the fact that litigation against physicians is on the increase is often
54 This problem was identified by a number of the submissions to the Health Professions
Regulatory Advisory Council. See supra note 47.
55 A.R. Localio et al., “Relation Between Malpractice Claims and Adverse Events Due to
Negligence: Results of the Harvard Medical Practice Study III” (1991) 325 New Eng. J. Med. 245.
56 See e.g. Eric J. Thomas et al., “Incidence and Types of Adverse Events and Negligent Care in
Utah and Colorado” (2000) 38 Med Care 261.
” J. Robert Prichard, Liability and Compensation in Health Care: A Report to the Conference of
Deputy Ministers of Health of the FederalProvincial/Territorial Review on Liability and
Compensation Issues in Health Care (Toronto: University of Toronto Press, 1990) at 4.
58 Ibid. at 24.
59 See Susan Lightstone, “Class-Action Lawsuits Medicine’s Newest Legal Headache” (2001) 165
CMAJ 622. This is not a new trend: between 1971 and 1990 the number of medical malpractice
claims filed per 100 Canadian doctors increased from 0.55 to 1.7 (see Don Dewees, David Duff &
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used as an argument that the present system is unsustainable and needs to be
reformed-but this increase has to be put in context, since extrapolation from the US
data suggests that the vast majority of patients do not pursue claims when they are the
victim of negligent treatment. The reasons for this failure to litigate are numerous and
include the time, stress, and costs involved, perceptions of the chances of success,
discomfort with power imbalances, and failure to realize that a medical error has been
made.’ Apart from the fact that litigation only provides compensation to a very few
patients, many have argued that the threat of litigation is not the best way to ensure
high quality care and that a better system would allow physicians, nurses, and other
health care professionals to disclose their errors without fear of legal reprisals.6
Physicians have, on occasion, tried to defend themselves against claims of
malpractice by arguing that they had inadequate resources because of rationing
decisions made by funders and managers. The courts are generally unsympathetic to
such claims. For example, Justice Spencer in Law Estate v. Simice said “that if it
comes to a choice between a physician’s responsibility to his or her individual patient
and his or her responsibility to the medicare system overall, the former must take
precedence in a case like this.”62 In reality, however, physicians must make decisions
that balance the needs of their own and other patients every day. The resources they
have to work with and the efficiency of the systems in which they work undoubtedly
influence the decisions and choices they make. But there has never been a successful
tort action in Canada against a governmental authority regarding rationing decisions
or incompetent management. This lack of success is largely due to the difficulties of
launching a civil action against a government, since true policy decisions (as opposed
to operational functions) are exempt from tort claims,63 as well as to the difficulties in
establishing causation (i.e., that on the balance of probabilities, one or more of the
many decisions made caused the harm suffered by a patient).
Michael J. Trebilcock, Exploring the Domain of Accident Law: Taking the Facts Seriously (New
York: Oxford University Press, 1996) at 95-96).
60 In a recent study of patients’ and physicians’ attitudes towards the disclosure of medical errors, a
number of physicians said that fear of litigation limits what they tell patients about errors that have
occurred: Thomas H. Gallagher et al., “Patients’ and Physicians’ Attitudes Regarding the Disclosure
of Medical Errors” (2003) 289 JAMA 1001. See also Michelle M. Mello & Troyen A. Brennan,
“Deterrence of Medical Errors: Theory and Evidence for Malpractice Reform” (2002) 80 Tex. L. Rev.
1595.
61 For an argument in favour of no-fault accident compensation, see Robert E. Astroff, “Show Me
the Money!: Making the Case for No-Fault Medical Malpractice Insurance” (1997) 5:3 Health L.
Rev. 9; contra Lewis N. Klar, “Tort and No-Fault” (1997) 5:3 Health L. Rev. 2.
62 (1994), 21 C.C.L.T. (2d) 228 at 260, 17 B.C.L.R. (3d) 1 (B.C.S.C.).
63 See Brown v. British Columbia (Minister of Transportation and Highways), [1994] 1 S.C.R. 420,
89 B.C.L.R. (2d) 1; Swinamer v. Nova Scotia (A.G), [1994] 1 S.C.R. 445, 129 N.S.R. (2d) 321. See
also Peter Hogg & Patrick J. Monahan, Liability of the Crown, 3d ed. (Toronto: Carswell, 2000) at
171.
2004] C.M. FLOOD & T Epps- WHAT ROLE FORA PATIENTS’BILL OF RIGHTS? 529
3.
Internal Complaints Mechanisms
A number of health care institutions have internal codes or bills of rights
articulating the standard of services that patients can expect to receive. For example,
the University Health Network
in Toronto has a “Patient Bill of Rights and
Responsibilities” that includes the right to be treated in a considerate and respectful
manner that considers the patient’s privacy and right to confidentiality.’
In those
provinces
that have regionalized systems, some regional authorities have also
articulated patients’ rights (and responsibilities). In Saskatchewan, for example, the
Saskatoon Health Region stipulates the rights of the client/patient, including the right
to receive reasonable explanations about one’s care; to agree to, or refuse, any
procedure or medical treatment, except as specified by law; and to request a second
medical opinion.65
A number of institutions and health regions also maintain an internal complaints
mechanism to provide patients with an opportunity to express and resolve their
concerns.66 These are positive initiatives, helping to have patients’ concerns dealt with
promptly. As they are voluntary initiatives, however, there is variation in the nature of
the rights granted and the level of enforcement. Furthermore, patients may view
internal complaints mechanisms as lacking independence and impartiality. There is
thus a strong argument for a supervisory appeal body to which a patient could turn if
dissatisfied with how a health care institution has dealt with a complaint and for
legislation establishing minimum standards and levels of enforcement to apply to all
providers.
4. Conclusion: The Benefits of a Patients’ Bill of Rights in Health
Care?
Together, the various mechanisms discussed above make up a system of patient
protection for rights in health care, but the system is not seamless and has a number of
problems. Self-regulation increasingly is viewed as lacking sufficient independence
and as being unresponsive
is costly, time-
consuming, and arbitrary as to whom it punishes and compensates. Voluntary steps
to patients’ needs. Civil litigation
64 University Health Network, “Patient Bill of Rights and Responsibilities”, online: University
65 Saskatoon Health Region, “Patient Advocate”, online: Saskatoon Health Region
saskatoonhealthregion.ca/yourihealth/patientadvocate.htn>.
66 See e.g. University Health Network, supra note 64, and Toronto’s Mt. Sinai Hospital, online: Mt.
Sinai Hospital
Relations Facilitator to resolve any problems. Patients are encouraged to address any questions or
concerns directly with the people involved in their case, but if they feel that a matter requires further
attention, they may contact the Patient Relations Facilitator. The Saskatoon Health Region has Client
Representatives who are available to help ensure that patients are aware of their rights and options
and use patients’ feedback to recommend changes or improvements to enhance the quality of health
services. See Saskatoon Health Region, ibid.
530
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taken by institutions and/or health regions to address complaints, while laudable and
indeed desirable, are piecemeal and lack the objectivity of independent review. A
patients’ bill of rights, monitored and enforced by an independent ombudsperson or
commissioner, provides the prospect of addressing some of the problems of enforcing
patients’ rights in health care by offering relatively inexpensive, low-level, and
independent resolution of disputes. As we discuss below, however, the concerns we
have about our present system of protecting patients’ rights in health care pale in
comparison to the problems associated with the very few available avenues of
recourse for ensuring patients’ rights to access quality care in a timely fashion.
B. Rights to Health Care
Many Canadians are surprised to find out that there is no free standing right in
Canadian law to receive health care.67 The Canada Health Act 8 is an icon of
Canadian citizenship, but in technical terms, it only sets out conditions with which
provincial governments must comply in order to receive federal funding assistance.
Nonetheless,
the ten provincial governments have established universal health
insurance programs. Having done so, these governments expose themselves to legal
duties in terms of how they administer their respective public programs. There are two
main routes to having government decisions regarding rights to health care reviewed.
The first route requires invoking the Charter. The most prominent recent cases are
Eldridge v. British Columbia (A.G),69 Cameron v. Nova Scotia (A.G),7 Chaoulli c.
Quibec (PG),71 and Auton v. British Columbia (Minister of Health).72 The second
route is through judicial review of administrative decisions.
67 Section 7 of the Canadian Charter of Rights and Freedoms, Part I of the Constitution Act, 1982,
being Schedule B to the Canada Act, 1982 (U.K.), 1982, c. 11, has been invoked to claim a right to
health care. Canadian courts have not ruled definitively on the issue; it appears unlikely, however, that
they will interpret the right to life protected by section 7 as including a positive right to health care.
See Canadian Bar Association, What’s Law Got to Do with It?: Health Care Reform in Canada
(Ottawa: The Canadian Bar Association, 1994) at 19-26.
68 R.S.C. 1985, c. C-6.
69 [1997] 3 S.C.R. 624, 38 B.C.L.R. (3d) 1 [Eldridge].
” (1999), 204 N.S.R. (2d) 1,177 D.L.R. (4th) 611 (N.S.C.A.) [Cameron].
71 [2000] RJ.Q. 786, [2000] J.Q. No. 479 (QL) (Sup. Ct.) [Chaoulh], aff’d [2003] J.Q. no 4 036
(QL) (C.A.).
72 (2000), 78 B.C.L.R. (3d) 55, 2000 BCSC 1142 [Auton]. Note that leave to appeal to the Supreme
Court of Canada has been granted to the plaintiff in Auton and that the appeal was heard on 9 June
2004: see infra note 77. A number of provinces have submitted notices of intervention respecting the
constitutional questions to be decided in the appeal, namely, Alberta, Saskatchewan, Newfoundland,
Quebec, Ontario, Manitoba, and New Brunswick. The constitutional questions concern whether the
definitions of “benefits” and “health care practitioners” in section 1 of the Medicare Protection Act,
R.S.B.C. 1996, c. 286, and ss. 17-29 of the Medical and Health Care Services Regulation, B.C. Reg.
426/97, infringe sections 7 and 15(1) of the Charter by failing to include services for autistic children
based on applied behavioural analysis.
2004] C.M. FLOOD & T EPPs- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 531
1. Charter Cases
Generally, Charter cases involve challenges to a provincial government’s refusal
to publicly fund a particular treatment. In Eldridge, the Supreme Court of Canada
held that the British Columbia government discriminated against deaf patients in
refusing to fund sign language interpreters in public hospitals.73 Cameron concerned
the Nova Scotia government’s decision not to fund male infertility treatments. The
Nova Scotia Court of Appeal ruled that the government had discriminated against the
infertile plaintiff but that this decision was saved under section 1 of the Charter (that
is, as a reasonable limit prescribed by law and demonstrably justified in a free and
democratic society) because of the high cost of fertility treatments.74 Leave to appeal
to the Supreme Court was denied.”
In Auton, the British Columbia Supreme Court
held that the British Columbia government discriminated against autistic children by
refusing to fund certain treatments and that this action was not saved by section 1 of
the Charter.76 This decision was affirmed by the British Columbia Court of Appeal but
is being appealed to the Supreme Court of Canada.77
Apart from Charter cases challenging a provincial government’s failure to
publicly fund treatments, there is at least one case challenging restrictions on private
financing for treatment in private hospitals and for physician services.78 Chaoulli
involved a challenge to the Quebec government’s prohibition on private health
insurance for services covered by the public plan.79 The plaintiff physician (Mr.
Chaoulli) and his patient (Mr. Zelotis) wished to provide and receive private medical
services of the kind ostensibly covered by the public plan but for which there were
waiting lists. They argued that patients have a constitutional right to pay privately for
certain services, such as hip surgery. The Quebec Superior Court agreed that there
were serious gaps and deficiencies in Quebec’s health care system and found that the
prohibitions against private insurance did violate the plaintiff’s rights of liberty and
security of the person as guaranteed by section 7 of the Charter. After balancing the
individual’s right to choose and access necessary health care services against the
collective goal of ensuring equal access to all, however, the court found these
violations to be in accordance with fundamental justice, and thus not in violation of
section 1 of the Charter. At the Quebec Court of Appeal, Justice Delisle found that
73 Eldridge, supra note 69.
74 Cameron, supra note 70.
75 Leave to appeal to the Supreme Court denied 29 June 2000 without reasons: [2000] 1 S.C.R. viii,
[1999] S.C.C.A. No. 531 (QL).
76 Auton, supra note 72.
77 Auton v. British Columbia (2002), 220 D.L.R. (4th) 411, 2002 BCCA 538, leave to appeal to
78 Canada is unique among developed countries in effectively restricting the development of a two-
tier system that would allow those with private resources or insurance to purchase quicker or better
care in the private sector. For a complete discussion, see Colleen M. Flood & Tom Archibald, “The
Illegality of Private Health Care in Canada” (2001) 164 CMAJ 825.
S.C.C. granted [2003] 1 S.C.R. vi, [2002] S.C.C.A. No. 510 (QL).
79 Chaoulli, supra note 71.
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section 7 was not breached at all, as the right to enter into contracts for private
insurance is an economic right that is not protected by section 7. Moreover, to be
successful in a section 7 claim, an applicant must demonstrate an actual or imminent
breach of his or her right, and in this case, the appellant’s right was not at risk. Justice
Brossard concurred with Justice Delisle, finding that neither life, liberty, nor security
of the person was jeopardized and, moreover, that elimination of the right to enter into
a private insurance contract, as provided for in Quebec legislation, is an economic
right, which, in itself and isolated from its potential consequences, is not fundamental
to one’s life. By comparison, Justice Forget found that there was a breach of section 7,
but like Justice Piche of the Superior Court, found that the breach of section 7 was in
accordance with the principles of fundamental justice. Leave to appeal this case to the
Supreme Court was granted and the case was heard on 8 June 2004.80
Although, historically, patients have had difficulty in persuading courts that the
Charter should operate to afford rights to health care, there are hints from both Auton
and Eldridge that future litigants will be more successful. One could limit the
precedent of Eldridge with an argument that the hearing impaired plaintiffs were not
asking for any new health care good or service, but for the means (interpretation
services) to utilize medical services to which all similarly situated patients without a
hearing impairment were entitled. But in Auton, the British Columbia Supreme Court
expressly rejected this means of limiting the precedent of Eldridge. Nevertheless, the
relatively modest victories of a few patients and the expense and delay inherent in
Charter litigation mean that recourse to the Charter remains an unsatisfactory way to
deal with most grievances and concerns regarding access to health care. Moreover,
although the Charter can, in certain circumstances, address explicit rationing decisions
by governments (for example, failing to fund a particular service or delisting a
particular service), it has far less capacity to challenge the multitude of resource
allocation decisions made in the health care system every day. In other words, while
the Charter can protect against explicit governmental decisions that openly deny or
prevent access to a particular treatment, most decisions are not explicit and have only
an indirect effect on the availability of care.
2. Administrative Tribunals and Judicial Review
In Ontario, there is an arm’s-length administrative tribunal that will hear patients’
claims that the provincial insurance plan should fund particular treatments.81 A high
profile case recently heard by the tribunal involved a successful claim to publicly fund
80 [2003] 1 S.C.R. vii, [2002] S.C.C.A. No. 280 (QL).
81 The Health Services Appeal and Review Board (Ministry of Health Appeal and Review Boards
Act, 1998, supra note 49) in Ontario is an independent quasi-judicial tribunal that conducts hearings
pursuant to a number of statutes, including the Health Insurance Act, R.S.O. 1990, c. H.6. Appeals
may be brought under the Health Insurance Act against a refusal by the General Manager of the
Ontario Health Insurance Plan to pay for health care services.
2004] C.M. FLOOD& T EPPS – WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 533
a genetic test for the BRCAI gene.82 The patient needed this test to determine whether
she was genetically predisposed to breast cancer and thus whether she needed to take
radical preventive measures (indeed the genetic test ultimately revealed that she did
not carry the gene and the double mastectomy was not called for). Independent
administrative tribunals, like the Health Services Appeal and Review Board in
Ontario, can provide an outlet for patients’ concerns about the breadth of publicly
funded schemes. Providing avenues of appeal to an administrative tribunal about what
services should and should not be publicly funded has the distinct advantage over
expensive and protracted Charter litigation that many more people will be able to
have
the existence of an
administrative appeal does not preclude a patient from seeking judicial review in the
regular courts on the grounds that a fair process was not followed or that the decision
was unreasonable in the circumstances.” Moreover, the existence of an appeal route
to an administrative tribunal need not open the floodgates for discontented patients to
make claims; much will depend on how the grounds for appeal are framed. Of the 155
cases heard in 2000, the Ontario Health Services Appeal and Review Board only
upheld a patient’s claim seventeen times.”
(and concerns) heard.83 Additionally,
their cases
Despite its advantages, however, establishing an administrative tribunal will not
cure all of the problems associated with civil litigation. Appearing before a tribunal
still requires a patient to make a challenge in a relatively adversarial environment and
to muster both time and resources (both of which are in short supply in a period of ill
health). Moreover, these administrative mechanisms do not result in any systemic
incentives for decision-makers
take seriously citizens’ concerns regarding
timeliness of care.
to
82 See Carolyn Abraham, “Tenacious Woman Scores Medical Victory” The Globe and Mail (27
August 1999) Al.
8 There is always, of course, a role for a Charter challenge as a safety net in addition to any
administrative means of review. The Ontario Health Services Review and Appeal Board considers
that it has jurisdiction to consider Charter challenges. On 6 September 2001, it released its decision in
LH. v. The General Manager (A.G Ontario, intervener) (Board file S.6492), on a motion brought by
the Ontario Health Insurance Plan asking the board to rule upon its jurisdiction to consider the
constitutional validity of a schedule to the Health Insurance Act, supra note 81. The board concluded
that it does have Charter jurisdiction. Indeed, the board had already been of that opinion. Under its
Rules of Practice and Procedure (adopted 22 September 2000), there was provision under Rule 11 for
bringing notice of a constitutional question to the board. A court will, however, review the board’s
decision on a Charter matter if it is not correct, whereas it may be deferential on other decisions and
not overturn the decision so long as it is reasonable. Subsection 6(3) of the Ministry of Health Appeal
and Review Boards Act, 1998, as arm by Government Efficiency Act, 2002, S.O. 2002, c. 18, Sch. I, s.
16, now provides that the board “shall not inquire into or make a decision concerning
the
constitutional validity of a provision of an Act or a regulation.”
84 How much deference a court will accord to an administrative tribunal depends on the facts of
each case; the standard of review can range from a standard of correctness (the least deferential)
through reasonableness simpliciter to patent unreasonableness (the most deferential).
85 Review of the Health Services Appeal and Review Board files, 26 October 2001, by a student at
the Faculty of Law, University of Toronto.
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3. Rights to Timely Treatment?
We have yet to see a Charter case on the right of a patient to access publicly
funded health care in a timely fashion. The Chaoulli case mentioned above will, for
the first time, raise the question, albeit indirectly, of whether Canadians have a right to
timely treatment and if instances of failure to treat in a timely fashion are justified,
given the larger redistributive agenda of publicly funded medicare. Chaoulli will also
have to address whether or not a right to purchase private insurance and avoid waiting
should trump the goal of universal one-tier health insurance.86
A world away
the Supreme Court
from Charter challenges before
is
administrative review by tribunals like the Ontario Health Services Appeal and
Review Board, which hears requests for out-of-country treatment where care is not
available in a timely way. The delay must, however, be said to “result in death or
medically significant irreversible tissue damage.”87 So in extreme cases, if a patient
can demonstrate that failure to provide timely care is likely to put him or her in
significant peril, he or she may be able to claim public funding for out-of-country
treatment. This situation is a very narrow window of redress, however, and Ontario is
currently the only province with an independent administrative tribunal empowered
with this jurisdiction. 8
General administrative law may also, in extreme cases, provide a remedy to
patients who have had to wait too long for treatment. To our knowledge, the first
Canadian example of this is the Quebec Superior Court case of Stein v. Quibec (Rigie
de l’Assurance-maladie),9 In that case, Mr. Stein’s doctors warned him that his life
was in danger and that he should be operated on as soon as possible but no later than
four to eight weeks from the date of detection of cancerous lesions in his liver. He
waited for three and a half months for a surgery date, and at the end of this period, a
date had not been set. Using his own money, Mr. Stein went to New York to buy the
treatment he needed and then sought to challenge the Quebec Health Insurance Board
86 While we support waiting time guarantees (see below), the goal should be, in our view, to
improve the quality of the publicly funded health care system, not to privatize. One of us has
expressed elsewhere her opposition to the Charter Challenges in the Chaouilli case. See Colleen M.
Flood, Comment, “Two-tier Medicine Isn’t the Answer” The National Post (21 June 2004) 10. See
contra Margaret Sommerville, Comment, “Getting Past the Myth of Medicare” The National Post (21
June 2004) 10.
87 See R.R.O. 1990, Reg. 552, s. 28.4(2)(b)(ii) [R.R.O. 1990].
88 British Columbia and Alberta also have tribunals that hear requests for out-of-country treatments
but these tribunals are not independent in the sense that government officials save on them. Alberta’s
Out-of-Country Health Services Committee (established by s. 28.01(1) of the Alberta Health Care
Insurance Regulation, Alta. Reg. 216/81) reviews, evaluates, and makes decisions pertaining to
funding applications for the costs associated with medical, hospital, and/or oral surgical services
received out of the country. There is also an Appeal Panel, established by s. 28.05(1) of Alta. Reg.
216/81. Members of both the committee and appeal panel are appointed by the Minister of Health and
Wellness.
89 [1999] R.J.Q. 2416, [1999] Q.J. No. 2724 (QL).
2004] C.M. FLOOD & T EPPS- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 535
officials’ refusal to pay for his treatment. The court indicated that it should apply the
to the board’s decision, namely, patent
most deferential standard of review
unreasonableness. Even on that very deferential standard, however, the board’s
decision was overturned.
As can be observed from the preceding discussion, patients who have concerns
about accessing timely care have only very limited forms of redress before the courts:
demonstrating that a decision not to publicly fund out-of-country treatment was
patently unreasonable or, in Ontario, that the waiting time would have caused “death
or medically significant irreversible tissue damage.”‘
In many cases, patients will be
in a situation where there are significant risks (and severe psychological stress) in
waiting for treatment, but where it is difficult to show conclusively that waiting will
put the patient in extreme peril. Moreover, requiring patients to initiate and make out
cases in this regard, when they are unwell and in need of care, imposes a very high
barrier to claims being made. Mr. Stein was able to pay the out-of-pocket expenses for
the care he needed in New York and then subsequently seek reimbursement. Most
patients will not be so fortunate. Finally, the fact that the law provides such limited
means of redress even in extreme cases does little to inculcate systemic incentives for
decision-makers to take citizens’ concerns regarding timeliness of care seriously.
Realizing rights to access timely treatment requires us to look beyond the clinical
patient-provider relationship and examine decision-making throughout the entire
health care system. The management and funding of the health care system play a
crucial part in determining whether patients’ needs are met and services are provided
in a timely fashion. For example, a recent study published in the New England
Journal of Medicine found that Ontario patients with certain medical conditions were
more likely to die when they were admitted to hospital on a weekend rather than a
weekday. The reasons given for this phenomenon were lower staffing levels in acute
care hospitals on weekends, as well as higher numbers of staff who were less
experienced, managed by fewer supervisors, and covering for more absent staff.9′ In
Saskatoon, the city’s only pediatric general surgeon has recently expressed his
concerns that an improper allocation of resources is resulting in Saskatoon children
waiting fifteen months for elective surgeries, whereas in most cities, children could
expect to wait less than ten weeks.92 These problems, we submit, cannot be addressed
by establishing and enforcing rights in health care and reviewing physician decision-
making. Rather, what is required is the establishment of rights to access timely health
care in the public sector.
90 R.R.O. 1990, supra note 87.
91 See Chaim M. Bell & Donald A. Redelmeier, “Mortality Among Patients Admitted to Hospitals
92 See Jason Warick, “Saskatoon Kids Wait for Surgery” The Leader Post (18 September 2001) A4.
on Weekends as Compared with Weekdays” (2001) 345 New Eng. J. Med. 663.
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III. Lessons from Different Jurisdictions
We now turn to an examination of the experiences of different jurisdictions in
implementing a patients’ bill of rights, particularly focusing on those jurisdictions
where rights have been established to access health care services in a timely fashion.
The jurisdictions we consider are Quebec, the US, New Zealand, the UK, Spain,
Sweden, and Italy. Comparing the experiences of jurisdictions that have implemented
patients’ rights legislation allows us to identify the key features of a scheme that
would most effectively achieve recognition and enforcement of patients’ rights,
including the right to access health care in a timely manner.
A. Quebec, Canada
In the province of Quebec, users’ rights in and to health care are set out in
legislation put in place in 1991. 9′ This legislation established
the Complaints
Commissioner to oversee the enforcement of patients’ rights and to whom appeals
could be made from decisions rendered by regional boards regarding patients’
complaints.94 New legislation, which came into force between January and April
2002, replaced the commissioner with a Health and Social Services Ombudsman (“the
Ombudsman”) with greater powers to enforce patients’ rights. 95
The new act gives the Ombudsman power, in certain circumstances, to directly
intervene if there are reasonable grounds to believe that the rights of a natural person
or a group of natural persons have been, or may likely be, adversely affected by an act
or omission, including that of any institution or regional board, or of any person
working for such a body.96 The Ombudsman has the general power to see to it, “by
any appropriate means”, that users are respected and that their rights are enforced.97
The Ombudsman’s main function is the examination of complaints by users regarding
the health services or social services the user received, ought to have received, is
receiving, or requires. When a complaint relates to a physician, dentist, or pharmacist,
however, the complaint is not heard by the Ombudsman but through an alternative
procedure involving a medical examiner designated by the board of directors of the
93 See Health Services Act, supra note 7, ss. 4-16.
94 Ibid.
95 See Ombudsman Act, supra note 8.
96 The Ombudsman may intervene if, in his or her opinion,
recourse to the process provided for in [the relevant legislation] would likely be
compromised, serve no purpose or be illusory, either owing to possible reprisals against
the person or group of persons concerned, the special vulnerability or abandonment of
the targeted clientele, or in any other case which, in the opinion of the Ombudsman,
warrants an immediate intervention of the Ombudsman, especially where problems
may interfere with the well-being of users and the recognition and enforcement of their
rights (ibid., s. 20).
9 Ibid., s. 7.
2004] C.M. FLOOD & T EPps- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 537
institution, facility, or centre where the patient was treated.98 The Ombudsman also
has the responsibility of ensuring that institutions and regional boards handle the
complaints addressed to them in conformity with the procedures set out in the act.99
The 2002 amendments also aim to speed up the handling of user complaints by
establishing an examination process that consists of only two levels instead of three.”
While the 2002 amendments in the Ombudsman Act provide for important
procedural changes in enforcing patients’ rights in Quebec, they do not significantly
change the content of patients’ rights. The Health Services Act specifies that health
services and social services should be offered “with continuity and in a personalized
and safe manner,” and that they should be “scientifically, humanly and socially
appropriate.’. 1 That act provides for rights in health care, such as the right to give
consent to treatment and to participate in any decision affecting one’s state of health
or welfare. Users’ rights also include some limited rights to health care. Section 7
provides that “[e]very person whose life or bodily integrity is endangered is entitled to
receive the care required by his condition. Every institution shall, where requested,
ensure that such care is provided.””‘ There is, however, no specific right to receive
timely treatment. Moreover, section 13 of the act also leaves open the prospect of
providers, institutions, and boards defending inadequate treatment by arguing that
such inadequacies were due to limited resources. 13
In sum, the Quebec system is worthy of examination, as it provides an accessible
forum in which patients can make complaints to health care institutions and regional
boards.1″4 With recent amendments, the system is now less complex than that first
introduced in 1991 and provides an opportunity to resolve both specific users’
complaints and more systemic concerns, as well as a mechanism for appeal to an
independent body. The success of the legislation will depend in large measure on how
vigorous the new Ombudsman enforces it. The extent to which the Ombudsman will
98 See Health Services Act, supra note 7, s. 42.
99 See Ombudsman Act, supra note 8, s. 7.
100 The 1991 legislation provided for a three-tier complaint procedure that required complaints to be
made to institutions, then to regional boards, and finally to the Complaints Commissioner. To achieve
a two-tier complaint procedure, the new act provides for the appointment of regional service quality
commissioners and local service quality commissioners who are to exercise the first level of
jurisdiction over complaints regarding services or activities coming under their authority. The
Ombudsman constitutes the second and final level. See generally Health Services Act, supra note 7,
ss. 29-40, 60-72; Ombudsman Act, ibid., s. 8.
10 Health Services Act, ibid., s. 5.
102 Ibid., s. 7.
103 Section 13, ibid., provides that “[tihe right to health services and social services and the right to
choose a professional and an institution as provided in sections 5 and 6 shall be exercised within the
framework of the legislative and regulatory provisions relating to the organizational and operational
structure of the institution and within the limits of the human, material and financial resources at its
disposal” [emphasis added].
104 Section 60, ibid., sets out the circumstances in which a complaint may be addressed directly to
the regional service quality commissioner of a regional board.
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be proactive may in turn be tied to the degree of independence he or she has from
government. Concern has been expressed that the position of Health and Social
Services Ombudsman is not as independent as it could be, given that the Ombudsman
remains answerable to the Minister of Health and Social Services and not to the
National Assembly. 5 The legislation is also limited by the fact that the complaints
process only applies to public institutions (or to those partly publicly financed) and
not to private facilities and, as mentioned above, that it does not provide any specific
right to timely treatment. 16
B. United States
Over the last decade, the US has been swept by a managed care revolution.
Private insurance companies now manage the delivery of care by physicians and
control costs through direct and indirect mechanisms and incentives. In response to
grave concerns about the limits placed on care by managed care companies, there has
been a flurry of federal and state legislation aimed at protecting those with insurance
from limitations on access to, and diminishment in, quality of health care. These
measures do not generally seek to expand the number of people covered by private
insurance (approximately 16.3 per cent of US citizens, mainly the working poor, have
no health insurance'”7), but rather constitute a set of consumer rights protecting those
who already have private insurance or government-sponsored insurance.
Explicit rationing by managed care plans regarding the scope of coverage,
duration of benefits, premiums, and choice of providers is regulated-mostly at the
state level-by legislative minimum standards,’
as well as by “patients’ bills of
In 1996, the US federal government enacted the
rights” in a number of states.”
“0 This act does not tackle the
Health Insurance Portability and Accountability Act.
problem of the uninsured in the system, but does make some attempt to prevent
105 See Quebec Ombudsman, Press Release, “Bill on the Health and Social Services Ombudsman:
The Quebec Ombudsman Issues Her Recommendations” (8 June 2001), online: Quebec Ombudsman
(t://www.ombuds.gouv.qc.ca/en/pubications/communique/010608.asp>.
See Health Services Act, supra note 7, s. 95.
‘0’ See OECD, OECD Health Data 2001: A Comparative Analysis of 30 Countries, CD-ROM
enrollees’ ability to access services covered by their private health insurance plan.
109 Four states that have specifically enacted patients’ bills of rights are Massachusetts, Vermont,
New Jersey, and West Virginia. The Massachusetts and Vermont legislation is not restricted to
managed care; however, the New Jersey and West Virginia bills of rights are typical of the many other
managed care laws that exist in over forty states and seek to regulate the managed care industry. Some
states have patients’ bills of rights that only target specific areas of the health care sector, as opposed
to dealing with the rights of those enrolled in managed care plans, such as home care (e.g., New
Hampshire).
110 Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, 110 Stat.
1936.
(Paris: OECD, 2001) at Table 146.
108 Much of the legislation that speaks to patients’ rights to access services only applies to existing
2004] C.M. FLOOD& T EPPS- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 539
insurance ensuring,
insurers, employers, and managed care plans from dropping coverage for people once
they begin to need expensive health care services. In 2001, the US House of
Representatives.” and the US Senate,’ 12 respectively, introduced bills providing for a
patients’ bill of rights. Both bills provide national standards of entitlements for those
to specialists,
with existing health
government-sponsored clinical trials, and emergency services,” 3 and both also enable
patients to appeal the decisions of a managed care plan to an independent review
board.” 4 The two bills also overcome,
the
limitations of the Employee Retirement Income Security Act of 1974,’ a Byzantine
piece of federal legislation that has been interpreted by the courts as preventing
patients from suing managed care plans in state courts with respect to decisions
concerning eligibility for treatment.”16
to significantly different degrees,
for example, access
Managed care plans may give financial and other incentives to doctors and health
care professionals to contain costs. In such a situation, implicit rationing may occur:
the physician will not deny a treatment explicitly on the basis of cost but will frame
Implicit rationing is more difficult to detect and
the decision as a medical one.’
regulate than explicit rationing; nonetheless, some attempts are made. For example, a
few states prohibit the use of “gag clauses”, whereby managed care plans disallow
doctors from discussing with patients treatments that the plan does not cover,
attempted referrals that the plan has refused, and the terms of the financial incentives
“.. U.S., Bill H.R. 2563, Bipartisan Patient Protection Act, 107th Cong., 2001 (second reading on 6
September 2001) [House Bill].
112 U.S., Bill S. 1052, Bipartisan Patient Protection Act, 107th Cong., 2001 (as passed by the
Senate on 29 June 2001) [Senate Bill]. Both bills failed to become law before the end of the 107th
congressional session. To date, they have not been reintroduced.
113 See Title I, Subtitle B in both the House Bill, supra note 111, and the Senate Bill, supra note 112.
See especially section 114 (Timely access to specialists), section 119 (Coverage for individuals
participating in approved clinical trials), and section 113 (Access to emergency care).
114 See ibid., ss. 101-105. Title IV amends the Employee Retirement Income Security Act of 1974,
29 U.S.C. 1001 (1990) [ERISA].
115 ERISA, ibid.
116 See e.g. Pegram v. Herdrich, 530 U.S. 211 (2000) and Marks v. Watters, WL 1154113 (4th Cir.
2003), where the plaintiff’s claim concerning eligibility was pre-empted by the ERISA. It is with
respect to the ERISA that the House Bill differs significantly from the Senate Bill. The House Bill
places significant limits on patients’ capacity to sue managed care plans in state courts. First, damage
claims for pain and suffering are limited to $1.5 million (House Bill, supra note 111, s. 402),
compared to the $5 million cap in the Senate Bill (supra note 112, s. 402). Second, punitive damages
are limited to $1.5 million (House Bill, supra note 111, s. 402). Finally, the House Bill would make
any suit in a state court subject to special federal standards, including a higher standard of proof
requiring the plaintiff to overcome a “presumption (rebuttable by clear and convincing evidence) that
the designated decisionmaker exercized ordinary care in making such determination” (House Bill,
supra note 111, s. 402 would amend the ERISA to include subparagraph 502(n)(1)(B)).
117 See Sara Rosenbaum, David M. Frankford & Brad Moore, “Who Should Determine When
Health Care Is Medically Necessary?” (1999) 340 New Eng. J. Med. 229.
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that doctors receive.”‘ 8 Similarly, both the Senate Bill and the House Bill, providing
for a federal patients’ bill of rights, prohibit gag clauses. 1 9
In addition to the proposed patients’ bills of rights, there is a patchwork of
federally mandated and state-initiated consumer assistance programs across the fifty
states. ‘2 State-initiated programs
two main categories: Medicaid
ombudsperson programs for those of the poor that the state has determined qualify for
Medicaid and general health care ombudsperson programs, which serve people with
private insurance.’
These programs have three main functions: investigating and
resolving consumer complaints; educating the public about consumers’ health care
rights; and providing feedback to policy-makers on how to improve the performance
of the health care system.
into
fall
The US system is sharply distinguishable from the Canadian system because of
the former’s failure to guarantee all citizens access to health care and its significantly
greater reliance on private insurance and out-of-pocket payments. Moreover, well-
insured Americans do not appear to suffer long waiting times and lists. Nonetheless,
there are lessons for Canada from the US experience, particularly when considering
regulation of entitlements and access to timely treatment. One insight from the US
experience is the possibility that governments are more willing to regulate the private
sector (e.g., managed care plans) than they are to bind public sector management.’22
Public choice theory would predict that governments are more willing to regulate
when the costs incurred are not borne by the government itself. For example, a recent
report prepared by PricewaterhouseCoopers for the American Association of Health
Plans found that government mandates and regulations were responsible for fifteen
per cent of the recent rise in health care costs.2 3 In the Canadian context, this may
mean that we are more likely to see the development and enforcement of patients’
rights when governments have devolved budgetary responsibilities
to other
institutions (e.g., regional health authorities and hospitals) and can demand of these
18 Robert L. Schwartz, “How Law and Regulation Shape Managed Care” in David A. Bennahum,
ed., Managed Care: Financial, Legal, and Ethical Issues (Cleveland: Pilgrim Press, 1999) 21 at 31.
119 See sections 131-35 in both the House Bill, supra note 111, and the Senate Bill, supra note 112.
120 See Families USA, Consumer Health Assistance Programs: Report on a National Survey (June
2001) at 2-6, online: Families USA
121 Ibid. at 5-6. Federal law requires that all states offer at least three specific types of consumer
health insurance programs:
long-term care ombudsperson programs, protection and advocacy
programs for persons with disabilities, and state health insurance assistance programs for Medicare
beneficiaries (those over 65) (ibid. at 2-3).
122 Of course, another explanation for the amount of patient rights’ legislation in the US relative to
the Canadian context is that there is simply a much greater need for such regulation because for-profit
insurers are more likely to subject patient interests to their own corporate interests.
123 See Robin Toner & Sheryl Gay Stolberg, “Decade After Health Care Crisis, Soaring Costs Bring
New Strains” New York limes (11 August 2002) 1.1. See also PricewaterhouseCoopers, “The Factors
Fuelling Rising Healthcare Costs” (April 2002) at 4, online: American Association of Health Plans
2004] C.M. FLOOD & T EPPs-WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 541
institutions that patients’ rights be upheld. It may also mean that the federal
government will look favourably upon any proposals for a patients’ bill of rights,
since the management and budgetary responsibility for health insurance programs
(and thus the task of realizing patients’ rights) rests primarily with the ten provinces.
C. New Zealand
The growth of a patients’ rights movement in New Zealand began in earnest in
1987 when it was revealed that an estimated thirty women with cervical carcinoma in
situ died as a result of the failure to appropriately treat women at an Auckland
hospital.”2 These women had, without their consent, been enrolled in a research trial,
which entailed withholding conventional treatment to see how the disease progressed.
A committee of inquiry was established to report on what factors had resulted in a
climate where such maltreatment could go unchecked. As a result of the committee’s
report,125 the New Zealand Parliament introduced new legislation in 1994.26 The goal
of the Health and Disability Commissioner Act
the rights of
“consumers” 127 of health and disability services by providing an accessible,
independent, and consumer friendly complaints mechanism. 12 To this end, a Code of
Health and Disability Consumers’Rights was enacted as a regulation under the act in
1996. 129
is to protect
The Code provides for ten general rights: the right to be treated with respect; the
right to freedom from discrimination, coercion, harassment, and exploitation; the right
to dignity and independence; the right to services of an appropriate standard; the right
to effective communication; the right to be fully informed; the right to make an
informed choice and give informed consent; the right to support; rights in respect of
124 This estimate comes from the “Brief of Evidence from Sandra Coney, Under the Health and
Disability Services Act 1993, in the Matter of the Ministerial Inquiry into the Under-reporting of
Cervical Cancer Abnormalities” at 6, online: Gisbome Cervical Screening Inquiry
125 See Silvia Cartwright, The Report of the Committee of Inquiry into Allegations Concerning the
Treatment of Cervical Cancer at National Women’s Hospital and into Other Related Matters
(Auckland: Government Printing Office, 1988); N.Z., Hansard, Introduction of Health Commissioner
Bill, 4 September 1990 (Rt. Hon. Helen Clark).
126 Health and Disability Commissioner Act 1994 (N.Z.), 1994/88.
127 Discourse about patients’ rights in Canada tends to use the term “patient”. The New Zealand
legislation, however, uses the term “consumer”, which conveys a wider meaning, as it encompasses
people who are not patients in the strict sense of the word, but who also have rights (e.g., a person
picking up a prescription from a pharmacy). In this article, we only use the term “consumer” when
discussing the New Zealand legislation.
128 Note that New Zealand has a no-fault accident compensation scheme that bars common law
claims for damages for personal injury. Arguably, because consumers in New Zealand lack the
common law’s protection in respect of medical negligence, the protection of rights by an independent
commissioner takes on a heightened importance.
129 Health and Disability Conmmissioner (Code of Health and Disability Services Consumers’
Rights) Regulations 1996 (N.Z.), 1996/78 [Code].
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teaching or research; and the right to complain. A number of these rights were already
recognized to some extent at common law and in professional codes of ethics. Under
the Code, the rights are applicable to all health and disability service providers,
including alternative providers such as naturopaths and homeopaths, whether working
in the public or private sector. A Health and Disability Commissioner is charged with
promoting the rights of consumers and investigating alleged breaches of the Code.3 ‘
The Code is limited, as there is no right to receive treatment, nor to receive timely
treatment.’31 Moreover, section 3 provides that there is no breach of the Code if a
provider has taken “reasonable actions in the circumstances to give effect to the
rights, and comply with the duties” in the Code. The current Health and Disability
Commissioner has written that section 3 of the Code “takes into account factors such
as a consumer’s clinical circumstances and a provider’s resource constraints. ‘
“132
Although it is surely correct not to hold a provider to account where the failure to
treat is due to inadequate resources, the commissioner’s statement raises the question
of who, in these circumstances, should be held to account. In this regard, it is
important to note that the Code frames rights in the context of the clinical encounter
and the “consumer’s” relationship with a health care provider. It does not provide
citizens with rights vis-A-vis public sector decision-makers, nor can the commissioner
directly investigate the actions of district health boards, which are responsible for
funding most health care services and managing the hospitals within their region. The
commissioner does, however, have the power to investigate and report on “generic
systems issues”,’33 which indirectly provides some means of review of managerial and
funding decisions.
130 The commissioner’s options on finding a breach of the Code, ibid., include the making of reports
and recommendations to the provider, the health professional body, the minister of health, or any
other person the commissioner thinks fit. Recommendations to providers vary from case to case, but
may include a written apology to the consumer; reimbursing the consumer’s costs; undertaking
specific training; and implementing and reviewing systems to prevent further breaches. Where
recommendations are made, the commissioner follows up and monitors implementation. The
commissioner may also refer the matter to the Director of Proceedings, who may bring disciplinary
and/or other proceedings (Health and Disability Commissioner Act, supra note 126, ss. 35-49).
131 The right to services of an appropriate standard, set out in section 2 of the Code, supra note 129,
includes the right of every consumer to have services provided: with reasonable care and skill; that
comply with legal, professional, ethical, and other relevant standards; in a manner consistent with his
or her needs; that minimize the potential harm to, and optimize the quality of life of, that consumer.
Every consumer also has the right to co-operation among providers to ensure quality and continuity
of services.
132 Ron Paterson, “Patients’ Rights in New Zealand: Lessons for Ontario?” (Paper presented at the
Second Annual Health Law Day, Faculty of Law, University of Toronto, 12 October 2001), online:
Institute for Research on Public Policy
133 In commenting on the commissioner’s power to investigate generic systems issues, Tipping J. in
Nicholls v. Health and Disability Commissioner, [1997] N.Z.A.R. 351 at paras. 16-17, [1997] NZAR
LEXIS 18 (H.C.) noted,
2004] C.M. FLOOD & T EPPS- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 543
Although New Zealand’s Code is limited primarily to protecting rights in health
care (as opposed to right to health care), it appears to be serving both patients and
health care professionals well. Patients now have a greater knowledge of what their
rights in health care are, and are finding it easier to make complaints. Ron Paterson,
the current Health and Disability Commissioner reported, for example, a dramatic
increase of forty-three per cent in complaints against doctors between the founding of
the commissioner’s office in 1996 and 2001.134 Although this might seem problematic
for physicians, the other side of the coin is that there has been a dramatic decline in
the number of physicians facing disciplinary charges since 1996. Because the
commissioner is the gatekeeper to professional discipline, and as the commissioner
emphasizes settlement of complaints, few complaints are ultimately referred to
disciplinary hearings.135
D. United Kingdom
The United Kingdom’s Health Service Ombudsman (“the Ombudsman”) may
investigate complaints from a person who “has sustained injustice or hardship” as a
consequence of “(a) a failure in a service provided by a health service body, (b) a
failure of such a body to provide a service which it was a function of the body to
provide, or (c) maladministration connected with any other action taken by or on
behalf of such a body.”‘ 36 In 1996, the Ombudsman’s authority was extended to
include complaints regarding all aspects of publicly funded health care services, as
There was some debate as to how far the Commissioner could go into what were
described as policy or management areas. The simple answer in my view is that the
Commissioner may investigate any conduct of a health care provider which (a) can
reasonably be described as a policy or practice; and (b) is or appears to be in breach of
the Code. Power of investigation is not open-ended in the sense that the subject matter
must fulfil the definition of the word “action” and must also be such that it is or appears
to be in breach of the Code but, subject to those limitations, the power of investigation
is not otherwise circumscribed. It is neither possible nor desirable for the Court to go
any further than that, much less attempt to provide abstract examples of what would or
would not be within the Commissioner’s powers of investigation. One thing however
can be said. Because of the fact that the word “action” includes any policy or practice,
the Commissioner is not limited to investigating single or discrete incidents or
happenings. She can investigate anything within the defmition of “action” so long as it
is or appears to her to be in breach of the Code.
134 Ron Paterson, “The Patients’ Complaints System in New Zealand” (2002) 21:3 Health Aff. 70.
135 See ibid. The commissioner is the gatekeeper to professional discipline, because under the
legislation, all complaints made to professional registration bodies must be referred to the
commissioner. This includes all complaints about doctors, nurses, dentists, pharmacists, et cetera.
Once referred to the commissioner, no disciplinary action can be taken by the professional body until
the commissioner or the Director of Proceedings (who, on referral from the commissioner, may bring
disciplinary and/or other proceedings against the health care provider) has dealt with the matter and
decided to take no further action. Only at this point can the professional body take up the matter itself
(Health and Disability Commissioner Act, supra note 126, ss. 38-39).
136 Health Service Commissioners Act 1993 (U.K.), 1993, c. 46, s. 3 [HSCA].
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well as complaints regarding the clinical judgment of physicians, nurses, and other
clinical professionals. 37 The Ombudsman may now also investigate the actions of
providers in the private sector.
in
that body, except
in
any discretion vested
The relevant legislation expressly provides that the Ombudsman is unable to
question the merits of a decision made by an administrative body in the course of
exercising
the case of
maladministration.138 This provision restricts the Ombudsman’s capacity to question
resource allocation decisions and systemic issues causing growing waiting times and
lists. Indeed, in her 2000-2001 annual report the Health Service Ombudsman for
England’39 noted that she had received several complaints about long waiting times
and asserted that “[t]he allocation of resources is a matter for the [National Health
Service] and local managers, and not for me.”’40 But she did go on to note that she is
not completely incapable of dealing with issues of waiting lists and times: “However,
I may criticise trusts which have not taken explicit and open decisions about resource
allocation; have no well-supported criteria for urgent access to services; or have no
mechanism for re-assessing individuals’ needs for the service. 141
UK governments have tried to tackle the problem of long waiting lists and times,
and one method has been to include statements setting out maximum waiting times in
a Patient’s Charter. First introduced in 1991, the charter set out national standards of
service regarding what patients in the public system could expect in terms of access
and treatment (i.e., the charter did not grant enforceable rights per se). At the regional
level, health authorities and National Health Service trusts (which manage the public
hospitals) were encouraged to negotiate even higher standards, and health authorities
published an annual report each year measuring every hospital’s performance against
charter standards. A revised Patient’s Charter, introduced on 1 April 1995, expressly
stated how long patients should expect to have to wait for various services. 4 2 In
137 See the Health Service Commissioners (Amendment) Act 1996 (U.K.), 1996, c. 5.
138 HSCA, supra note 136, ss. 3(4)-(5). This provision is consistent with case law reflecting a
general reluctance on the part of the courts to intervene in the rationing and allocation decisions made
by government authorities and providers within the UK’s publicly funded health care system. For a
discussion of these cases, see John H. Tingle, “The Allocation of Healthcare Resources in the
National Health Service in England: Professional and Legal Issues” (1993) 2 Annals Health L. 195.
See also R. v. Cambridge Health Authority, [1995] 2 All E.R. 129 (C.A.) at 130 where it was noted
that the judiciary “was not in a position to decide on the correctness of the difficult and agonising
judgments which had to be made by health authorities as to how a limited budget was best allocated
to the maximum advantage of the maximum number of patients…”
139 Note that there is a Health Service Ombudsman for each of England, Scotland, and Wales.
140 The Health Service Ombudsman for England, Annual Report 2001-02 at 9, online:
141 Ibid.
142 The charter noted that patients could expect to be seen immediately in Accident and Emergency
Departments, within 18 months for in-patient or day case services, within 12 months for coronary
artery bypass grafts and associated procedures, and within 26 weeks for a first consultant outpatient
2004] C.M. FLOOD & T Epps- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 545
addition to setting out the rights of patients, the charter also set out the standards of
service that patients could expect to receive, including respect for privacy, dignity,
and religious beliefs, as well as specific guarantees with respect to waiting times (e.g.,
a guarantee of being seen within thirty minutes of one’s specific appointment time in
an outpatient clinic).”‘
The New Labour’s reforms of December 1997 proposed to improve the Patient’s
Charter to “tell people about the standards of treatment and care they can expect of
the NHS. It will also explain patients’ responsibilities.”‘” As of 1 April 2001, a new
document-Your Guide to the NHS-replaced the charter in England,’45 but the
Patient’s Charter still applies in Wales, Scotland, and Northern Ireland. The Guide sets
out patients’ rights and responsibilities and highlights the standards and services
people can expect from the NHS. 14 6 The new Guide has been criticized for being too
vague about what patients can expect and failing to explicitly state patients’ rights to,
for example, a free yearly health check if over seventy-five years of age.’47 As with
the charter that preceded it, the Guide allows patients to make complaints but does not
create legally enforceable rights. The new Guide does, however, provide a specific
commitment with regard to waiting times and states that from 2002, if an operation is
cancelled on the day of surgery for non-clinical reasons, the hospital will have to offer
another date within the next twenty-eight days. If a hospital fails to comply, it must
pay for the treatment at the time and hospital chosen by the patient.”‘
Have the guarantees and statements made in the Patient’s Charter and Guide
regarding waiting times had any impact on reducing waiting times and lists in the
UK? As one of us has noted elsewhere, the UK Conservative government of the day
had some success in the mid-1990s in its attempt to stem growing waiting lists.”‘
appointment, with 90 per cent of patients being seen within 13 weeks. See National Health Service,
NHS Waiting Times Good Practice Guide, January 1996 (Leeds: NHS Executive, 1996) at 2.
143 See U.K., Department of Health, The Patient’s Charter and You-A Charter for England (1996),
online: Press for Change
’44 U.K., Department of Health, The New NHS: Modern Dependable (A White Paper presented to
Parliament by the Secretary of State for Health by Command of Her Majesty) (London: The
Stationery Office, 1997) at 4.20.
145 National Health Service, Your Guide to the NHS, online: National Health Service
146 See U.K., Department of Health, Press Release, “‘Your Guide to the NHS’ Launched” (Ref. No.
2001/0055) (26 January 2001), online: Department of Health
147 See Simon Crompton, “Are We Losing Our Rights as Patients?” The imes (17 July 2001).
148 See Guide, supra note 145 at 31. The Guide also provides that outpatients should expect to wait
no more than 26 weeks; patients can expect to be seen within 30 minutes of their appointment at an
outpatient clinic; in-patients should expect to wait no more than 18 months; a patient referred urgently
with suspected cancer will be seen within two weeks; and, beginning in 2003 for all patients,
suspected angina patients will be assessed in a specialist chest pain clinic within two weeks (see
Guide, ibid. at 27).
149 See Colleen M. Flood, International Health Care Reform: A Legal, Economic and Political
Analysis (London: Routledge, 2000) at 100-101. The number of individuals waiting for elective
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Nevertheless, how much of this improvement is due to the increased efficiency of the
system, as opposed to additional government spending, is unclear. Moreover, the mere
fact that there is evidence indicating that the number of people waiting has declined
does not reveal whether the amount of time that people have to wait has decreased.
Additionally, it is very difficult to disentangle cause and effect and to assess whether
there have been any real reductions in waiting lists and times. Efforts at reducing
waiting times and lists have occurred at the same time as implementations of wave
after wave of health care reform. As a result, we cannot conclusively determine
whether reductions in the growth of waiting times and lists are a short-term
phenomenon and whether improvements have been due to improved management and
productivity or to increased resources being pumped into the system. There was also
some evidence that reductions in waiting times for elective surgeries came at the cost
of promptly treating those with acute needs, which would highlight the importance of
using caution when relying on incentives to change decision-making behaviour. 15
Nonetheless, the evidence from the UK in the late 1980s and 1990s was that waiting
times did decline in response to a combination of infusions of public funding and
changes
to the incentive structure within the public sector so as to reward
improvements in timeliness.15
The inclusion of statements and guarantees in a Patient’s Charter and now in a
Guide do not, in general, confer enforceable rights for patients, but rather are used as
performance benchmarks for decision-makers in the public system. To some extent,
the inclusion of statements and guarantees of waiting times and lists in the Patient’s
procedures fell by 2.9 per cent in the period from December 1994 to March 1995, when there were
1,040,161 people on waiting lists. See Anthony Harrison, ed., Health Care UK 1994/95: An Annual
Review of Health Care Policy (Bristol: King’s Fund Policy Institute, 1995) at 38. Approximately the
same number of people (1,040,152) were on waiting lists on 30 September 1995. The number of
people waiting for more than 12 months for elective procedures on 30 September 1995 was 27,900-
a reduction of 55 per cent since September 1994, when there were 62,300. See U.K., Department of
Health, News Release, “Hospital Waiting List Statistics Published” (Ref. No. 96/1) (4 January 1996));
Timothy Besley, John Hall & Ian Preston (Private Health Insurance and the State of the NHS
(London: The Institute for Fiscal Studies, 1996) at 9), similarly show a significant decline in the
percentage of the population on long-term waiting lists after 1990. Through 1997, waiting lists started
to increase once again with 1,207,500 waiting at the end of September 1997 (an increase of 1.5 per
cent over the previous quarter), with the number of people waiting for more than 12 months
increasing by 24 per cent. See Janet Snell, “Action Team Appointed to Tackle Rising Waiting Lists”
Health Service Journal (20 November 1997) 4. The numbers waiting had slightly declined by 31
January 1999 with 1,159,400 people waiting, with the number of people waiting more than 12 months
dropping to 54,600. See U.K., Department of Health, Statistical Press Notice, “NHS Waiting List
Figures, 31 January 1999” (Ref. No. 1999/0119) (2 March 1999), online: Department of Health
150 See Lewis etal., supra note 27.
151 See Christopher Ham, Health Policy in Britain: The Politics and Organisation of the National
Health Service, 3d ed. (London: Macmillan, 1992) at 71; Rudolf Klein, The New Politics of the
National Health Service, 3d ed. (London: Longman, 1995) at 237; Barton H. Hamilton & Robert
Edward Bramley-Harker, “The Impact of the NHS Reforms on Queues and Surgical Outcomes in
England: Evidence from Hip Fracture Patients” (1999) 109 The Econ. J. 437.
2004] C.M. FLOOD & T EPPS- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 547
Charter has been used by UK governments to symbolize a commitment to respond to
patients’ concerns regarding timeliness. If a government has the will to reduce waiting
times and lists, then it can do so through some combination of resource investment,
use of financial incentives, and improvements in efficiency. But the US experience
clearly indicates that the combination of methods used to change behaviour must be
carefully calibrated so as not to create other problems in the system, such as the
shifting of resources away from the treatiment of those with acute needs to the
treatment of those who have waited too long for elective surgery.
E. Spain
While in the UK, guarantees regarding waiting times are not enforceable by
individual patients, guarantees regarding waiting time are enshrined in legislation in
the Navarra region of Spain.’52 Over the last eight years, three of the eight Spanish
regional health authorities that have adopted policies designed to reduce the length of
waiting lists have shown better waiting list time indicators and patient satisfaction.’53
According to Toni Ramirez-Arellano (Health Advisor of the Cabinet of the Spanish
Prime Minister), the average waiting time for surgery declined from 135 days in 1996
to sixty-eight days in 2001; the number of patients waiting more than six months
declined from 49,842 in 1996 to 5,155 in 2001; ahid the total number of patients
waiting for surgery declined from 190,000 in 1995 to 132,221 in 1998 but had
increased again to 166,583 in 2001 .’ The Spanish waiting list initiative incorporated
four different types of measures to meet its objectives of reducing waiting lists and
times. The measures were: (1) validating information systems regarding the number
of patients waiting; (2) providing incentives to organizations to meet both expenditure
targets and waiting time targets; (3) adding temporary additional capacity through
contracting out to private hospitals and paying overtime in public hospitals; and (4)
requiring the regional government to pay for a patient’s care in the private sector if a
public hospital in its region is unable to meet the waiting time target. The greatest
reduction in waiting times occurred in the Navarra Regional health service, which had
incorporated waiting standards into its regional legislation.’55
The legislation in Navarra provides for a maximum waiting time of 180 days for
elective surgery treatments.’56 A central unit is charged with assessing the situation of
152 See Toni Ramirez-Arellano, “Surgical Waiting List Initiative: INSALUD (Spain), 1996-2001”
(Plenary presentation to the International Health Economics Association, July 2001) [unpublished]
[Ramirez-Arellano, “Initiative”]; E-mail correspondence from Toni Ramirez-Arellano to Colleen M.
Flood (5 September 2001) [Ramirez-Arellano, E-mail].
153 See Ramirez-Arellano, “Initiative”, ibid.
154 Ibid.
155 See ibid.; Ramirez-Arellano, E-mail, supra note 152.
156 Elective surgery treatments account for approximately 90 per cent of all non-urgent treatments
affected by the waiting list problem (see Ramirez-Arellano, E-mail, ibid.).
548
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each patient on the waiting list.157 If it is foreseen that the hospital of reference within
the patient’s local region will be unable to meet the waiting time guarantee, the patient
must be sent to another public hospital. If no public hospital can satisfy the waiting
time guarantee, the patient has the right to choose a private hospital or a public/private
hospital outside the area governed by the regional health service in order to obtain the
required treatment. When this occurs, the regional government in question pays for all
costs, including the transportation and living expenses of both the patient and a
companion. Following the success in Navarra, the regional government of Andalusia
is taking steps to incorporate guarantees of maximum waiting times into its patients’
rights legislation.’58
While it would seem that the Spanish initiatives have been very successful, it is
not possible to extrapolate from this experience alone to conclude that such an
initiative would necessarily work in other jurisdictions. For example, the fact that
Spain has succeeded in reducing waiting lists may be due to surplus capacity in the
hospital sector (public and private), so that financial incentives to reduce waiting lists
can be acted upon readily. Further research is required into the Spanish initiative on
waiting lists to see whether it would be possible for a system without such high levels
of hospital capacity to realize the same gains using waiting list guarantees and
associated financial penalties and incentives.
F Sweden
In Sweden, the right of each resident to all “necessary” health care is part of
national legislation.159 In 1992, the Patient Choice and Care Guarantee (“PCCG”)
reforms were introduced. The PCCG reforms were directed specifically at hospital
care and provided patients requiring surgery or other hospital treatment the right to
choose freely the hospital in which they would receive treatment. The assumption
behind this initiative was that patients would choose the hospital with the shortest
waiting times. “[M]oney was to follow the patient,” so that if a patient elected to
receive care in a hospital other than the one to which he or she had originally been
assigned, a specified sum of money would be transferred from the budget of the latter
to that of the former.1″ As a result, Blomqvist notes, there has been a substantial
reduction in waiting times for important kinds of elective surgery, to the point where,
157 An “Official Register of Surgical Demand” is kept, and waiting time commences when a doctor
signs a form for surgical treatment and the patient accepts the same with his or her signature. The
patient’s copy is regarded as a “guarantee” for the patient that he or she will get treatment within the
next six months (see ibid.).
158 See ibid.
159 See Ake Blomqvist, “International Health Care Models: Sweden” (Background paper prepared
for the Standing Senate Committee on Social Affairs, Science and Technology, March 2001).
160 Michael I. Harrison & Johan Calltorp, “The Reorientation of Market-Oriented Reforms in
Swedish Health-Care” (2000) 50 Health Pol’y 219 at 222.
2004] C.M. FLOOD & T EPps- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 549
by the end of 1993, waiting lists “ceased to be a political issue”.161 More recently,
maximum waiting time guarantees have been introduced for consultations with
primary care doctors and specialists. Blomqvist notes that the guarantees specify eight
days as the maximum waiting time before a person will be seen by a doctor in primary
care (although patients may be seen by other personnel, such as a nurse, before that),
and three months as the maximum waiting time to see a specialist.162
The Swedish experience is of particular interest, as the rights initially granted to
patients were not in regard to any specific maximum waiting times, but rather
concerned the right to freely choose a hospital. In Canada, there are no provincial
restrictions on which hospitals a patient can be treated in. Nevertheless, it would be a
radical departure in the Canadian context to move away from block-funding hospitals
largely regardless of their
(whereby hospitals receive a set amount per year
productivity levels) to allow public funds to follow patients. If the financial incentives
were changed then hospitals would be rewarded for competing for patients by
reducing waiting times. Undoubtedly, such a proposal would impact long-term
planning, financial stability, and prioritization of resources within hospitals, and there
are risks. In addition, significant geographic barriers exist in that some Canadians do
not have a choice of hospitals within a reasonable distance. Thus, the Swedish
approach to waiting lists cannot be recommended without further study, although
what evidence there is suggests that it is worthy of consideration.
G
Italy
Article 32 of the Italian Constitution provides that the Republic of Italy protects
health as a fundamental right of the individual and as a concern of the collectivity, and
guarantees free care to the indigent. 6 3 George France notes that over the years, the
courts have increasingly interpreted this provision as giving a right to health care to
all residents.”6 For example, the Italian Constitutional Court found in 1988 that since
the right to health is “primary and fundamental”, patients have the right to “full and
complete protection”.’65 Hence, patients cannot be refused access to “necessary” care,
even if this is only available in a private facility.166 Accordingly, patients have
161 Blomqvist, supra note 159, citing Harrison & Calltorp, supra note 160 at 223.
162 Blomqvist, ibid.
163 Cosituzione della Repubblica ltaliana, 1947, art. 32: “La Repubblica tutela la salute come
fondamentale diritto dell’individuo e interesse della collettiviti, e garantisce cure gratuite agli
indigenti.”
164 George France, “Cross-Border Flows of Italian Patients Within the European Union: An
International Trade Approach” (1997) 7:3 (Supp.) Eur. J. Pub. Health 18. See also George France,
“The Changing Nature of the Right to Health Care in Italy” in Andr6 den Exter & Herbert Hermans,
eds., The Right to Health Care in Several European Countries (The Hague: Kluwer Law
International, 1999) 39 [France, “Changing Nature”].
165 Corte constituzionale, Sentenza n. 992 (1988), online: Consulta Online
166 See ibid.
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frequently travelled outside their local health authority, abroad, or gone to a private
provider in order to obtain services that were not available locally.
George France reports that although the use of providers outside the local health
authority or region has always required authorization, the tendency in the past was for
this to be done automatically and often on a retroactive basis.’67 The non-availability
of a particular service in a particular area was considered a valid reason for a patient
to get authorization to go to another area, and if necessary, to a private provider. Since
the early 1990s, however, the courts have begun to recognize that due to fiscal
constraints, the Italian National Health Service (Servizio Sanitario Nazionale or
“SSN”) might have to be selective in the kinds of care it provides.168 In 1989, the
central authorities restricted the ability of patients to go abroad for treatment. A list of
pathologies was drawn up for which authorization could be granted. This list specifies
the maximum waiting times beyond which patients are entitled to go abroad.
Legislation requires a referral committee made up of doctors to establish whether the
patient can obtain the necessary care within a reasonable time from a domestic
provider. If this is not possible, the committee determines where the patient can best
obtain the care in question abroad, and the SSN pays for the costs incurred.’69
There
is very little evidence from Italy regarding the consequences of its
approach to waiting lists. It would seem that waiting times and lists are not a
significant problem, but we have little evidence about the cost of this initiative. Only
2.4 per cent of Italians seeking diagnoses in 2001 experienced delays of greater than
sixty days, and only 1.2 per cent waited longer than sixty days to be examined by a
specialist.7 Unfortunately, those subjected to the longest waits tended to be the
elderly and people of the
lowest levels of education, with the indigent also
experiencing delays before being seen by specialists.’ 7′ The government attributes
these problems to organizational inefficiencies and inequities. 17 2
Conclusion
What would be the benefit of the passage of a patients’ bill of rights in Canada, be
it at the federal level, or more likely, the provincial level? The experiences from New
Zealand, Quebec, and several US states that have consumer assistance programs
suggest that there are significant benefits to be had in a patients’ bill of rights that
addresses rights in health care. Such a code would allow for the enumeration of
patients’ rights in one comprehensive piece of legislation and would provide an
167 Personal communication between the authors and George France.
168 See France, “Changing Nature”, supra note 164 at 48.
169 See ibid.
170 See National Institute of Statistics, Annual Report 2001: Synthesis-Diversity in the Differences
at 39, online: Istat
“‘ See ibid.
172 See ibid.
2004] C.M. FLOOD& T EPPS-WHAT ROLE FORA PATIENTS’BILL OF RIGHTS? 551
independent
(by means of an
enforcement mechanism
commissioner or
ombudsperson) that would be both more accessible’73 and viewed as more legitimate
and independent than that available through self-regulating professional bodies. A
patients’ bill of rights would also: provide oversight of alternative health care
providers who are currently not subject to regulation and/or professional self-
regulation; provide (if the New Zealand model was followed) a centralized complaints
system with just one entry point (as opposed to, for example, the existence of twenty-
three professional colleges in Ontario, which causes confusion regarding to which
college a complaint should be made);’
allow investigation of practice settings, such
as hospitals, and of systemic complaints that are not attributable to a sole identifiable
professional; promote low-level resolution of complaints; provide remedies;’75 and
facilitate ongoing education of both patients and health care providers.
A patients’ bill of rights should emphasize education so that it does not become
simply a complaints mechanism, but a positive instrument by which the protection of
rights in health care can be promoted. Of course, as with any such initiative, its
successful implementation and credibility would depend on adequate resources”‘b and
the independence of the office of the ombudsman or commissioner. Some may argue
that establishing a commissioner or ombudsperson runs the risk of establishing a
bureaucratic entity that will detract funding from front line patient care. We believe,
however, that the amount required to establish an enforcement body would be more
than compensated by the potential benefits, including, as we discuss below, incentives
to increase efficiencies within the health care system.
There are thus many positive contributions a patients’ bill of rights could make in
improving patients’ rights in health care and in the interactions between health care
providers and patients. A patients’ bill of rights alone, however, would not address
what has become a key concern of Canadians: timely access to health care services.
Canadians who receive treatment are, on the whole, very satisfied with the clinical
encounter, but Canadians remain very concerned about access and especially waiting
times for treatment, and it is this concern that is driving mounting dissatisfaction with
173 The New Zealand model is valuable in this regard for its success in streamlining the complaints
system and its efforts at educating the public so that they know their rights and where to complain if
they think that those rights have been breached.
174 Of course, Canadians would remain free to bring a legal claim in the courts.
175 Remedies might include making recommendations to the provider, the health professional body,
or others that a written apology be provided to the patient; that the patient’s costs (where applicable)
be reimbursed; that they undertake specific training; and that systems be reviewed or implemented to
prevent further breaches.
176 The Institute for Research on Public Policy’s Task Force on Health Policy noted the importance
of overcoming “the inherent scepticism of most people regarding public statements of good
intentions.” It also noted that if a bill of rights is going to help, “it will require a very substantial
commitment of resources to service delivery and to implemention processes” (IRRP Task Force on
Health Policy, Recommendations to First Ministers (Montreal: The Institute for Research on Public
Policy, 2000) at 27).
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publicly funded medicare. Patients and citizens have very few avenues of recourse
vis-A-vis the funders and managers in the public health care system, whose cumulative
decision-making determines waiting times. The perceived inability of the publicly
funded health care system to ensure timely access to care has also become a platform
for those who would like to see the introduction of two-tier medicine.’77 Failing to
address in a systematic way the issue of timeliness has consequences not only for
those individuals in need of care, but for the political sustainability of Canada’s much
cherished medicare program.’ Equitable access cannot be achieved by simply stating
that everyone has a right to access publicly funded care, as that right is hollow
without also speaking to the issues of quality and timeliness.
To be clear, we are not advocating the elimination of waiting times for treatment.
It would be extremely inefficient to run a system at a capacity that could meet all
health needs the moment they arise (hospitals would be often empty, hospital beds
would be unused or used by people who do not really need to be there, and health
care professionals would be underutilized, all at great expense). Consequently some
form of prioritization of health care needs and thus queueing or waiting is, somewhat
ironically, a necessary characteristic of an efficient system. That being said, if there
are no incentives within a publicly funded system to maintain standards regarding
waiting lists and times, the evidence tends to suggest that waiting times will grow and
that waiting lists may be unfairly administered. This not only places a significant
burden on those who must wait, but undermines public confidence in the fairness and
sustainability of the publicly funded health care system.
One of the goals of this article has been to consider whether it would be feasible
to include a right to timely treatment and specific guarantees regarding waiting times
in a patients’ bill of rights. Such initiatives are not without precedent, and the
experiences of the UK, Spain, Sweden, and Italy are worthy of consideration in this
regard. Each of these countries has tackled growing waiting times and lists, either by
setting out rights to timely treatment in legislation or by setting out expectations in a
public document and following through with systematic changes designed to realize
those targets. In England, patients are told what they can expect in terms of waiting
times, and financial incentives are used to encourage managers within the public
system to achieve those targets. In one region of Spain, residents have rights to
treatment within maximum waiting times enshrined in law, and if the waiting time is
exceeded, then the local health authority must pay for their treatment in another
region or jurisdiction. In Sweden, residents have the right to choose any hospital they
177 See e.g. Susan Pinker, “Why Does Such a Big Issue Rest on the Shoulders of Two Citizens? FP
Asks After Losing Private Medicine Battle” (2000) 162 CMAJ 1348.
178 For an elaboration of this argument, see The Commission on the Future of Health Care in
Canada, “Strengthening the Foundations: Modernizing the Canada Health Act” (Discussion Paper
No. 13, August 2002), online: University of Toronto
2004] C.M. FLOOD & T Epps- WHAT ROLE FOR A PATIENTS’BILL OF RIGHTS? 553
wish for treatment, and “money follows the patient”, which provides strong financial
incentives to hospitals to keep waiting times down.
Have these initiatives been successful? Although there is some evidence to
indicate that they have, particularly from Spain and Sweden, it is virtually impossible
to conclude with certainty whether the observed successes are attributable to the
establishment of a patients’ bill of rights or to other factors. Efforts at reducing
waiting time and lists often occur simultaneously with other system reforms and
changes in the level of health care funding. We cannot conclusively determine
whether reductions in the growth in waiting times and lists are simply a short-term
blip; whether reductions have been achieved due to the particular nature of local
supply conditions (e.g., surplus hospital capacity); or whether improvements are
attributable to improved efficiency and management or the infusion of increased
resources into the system. What is apparent, however, is that a patients’ bill of rights
can be a meaningful part of a package of initiatives to be undertaken by a government
determined to tackle growing waiting times in the public system.
At a minimum, any Canadian government evaluating the merits of a patients’ bill
of rights should at least consider including not only rights in health care but also
rights to health care. A patients’ bill of rights that provides for both types of rights
would also, and probably most importantly, go some way toward restoring public
confidence in medicare. The inclusion of statements and guarantees of waiting times
and list in the NHS Patient’s Charter, for example, symbolized the UK government’s
commitment to respond to patients’ concerns regarding timeliness. In providing for a
right to timely care, the goal would be to reorient the system partially toward the
justified concerns of Canadians and to impose some measure of accountability on the
part of funders and/or managers for ensuring the delivery of timely care. A patients’
bill of rights could set out generous maximum waiting times for different types of
treatment (e.g., six weeks for oncology services or six months for non-urgent elective
surgery, such as hip operations). The maximum time determined would obviously
need to be done on the basis of the best scientific evidence available about the extent
to which it is safe to allow patients to wait. Physicians would still triage patients on
the basis of the acuity of their condition, but patients would have the security of
knowing that they would not have to wait longer than the maximum waiting time.
It is clear, however, that a patients’ bill of rights alone cannot cure all that ails
medicare, and a key question is what other system reforms would be required to
achieve the waiting time targets articulated in a patients’ bill of rights. We envisage an
independent commissioner or ombudsperson that would be charged with the task of
investigating complaints
in relation to access and timeliness. With respect to
timeliness, unlike the rights in health care (such as the right to be treated with
respect), the goal would not be to give redress to individual patients, but to provide
for an independent audit with annual public reporting on the degree to which health
authorities/provincial ministries of health are achieving waiting list targets. The
annual exposure of this kind of information to the sunlight of public scrutiny should
provide further incentive for decision-makers to strive to reduce overall waiting times.
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The US system amply demonstrates the many access problems that can arise within a
privately financed system. In our opinion, a patient ombudsperson should monitor
access and waiting times in publicly funded medicare, as well as access to privately
financed services (private insurers, home care, prescription drugs, nursing homes,
etc.).
Another approach to addressing the issue of waiting times, coming out of the
experiences in Spain, Italy, and the UK, would be to give patients who have been
waiting beyond the maximum guaranteed time the option to have the necessary
surgery performed in another city or jurisdiction at the expense of the relevant
hospital or health authority unable to meet the waiting time target. Yet another
approach from Sweden would be to allow patients to choose their own hospital and to
pay those hospitals who treat more patients additional fees, thereby promoting
competition between hospitals to reduce waiting times. These reforms have strong
appeal, as they provide clear financial incentives for performance. As the use of
financial incentives can be problematic, however, they should not be lightly employed
without closely considering their possible downstream consequences. In particular,
there is evidence from the UK that the initial employment of these kinds of incentives
resulted in resources being shifted from one sector (outpatients) to another (elective
surgery), with the result that waiting times improved in one area and worsened in
another.179 Having said that governments need to exercise caution in using strong
financial incentives, we must point out, of course, that while the present system is
already replete with financial incentives, none of them direct decision-makers to take
waiting times seriously. Moreover, we can also point out that lessons learned in the
UK could assist Canadian policy-makers in calibrating financial incentives, predicting
and monitoring likely sources of tension (e.g., inappropriate resource shifting), and
setting appropriate waiting list targets. Thus, although there are dangers in tinkering
with incentives and a risk that unforeseen consequences might come to pass, there are
also considerable dangers in governments not directly tackling, and not being seen to
tackle, Canadians’ concerns about timely access to treatment.
179 See Anthony Harrison, “The War on Waiting” in John Appleby & Anthony Harrison, eds.,
Health Care UK Winter 2000: The King’s Fund Review of Health Policy (London: King’s Fund
Policy Institute, 2000) 52.
