Substitute decision-makers in privacy legislation that affects health information in Alberta.

• Author: Inions, Noela J.

1. Introduction

   The authority to exercise the rights and powers of the individual is a fundamental component of all health information privacy regimes. Legislative entitlements are meaningless without the ability to exercise rights or powers. Substitute or surrogate decision-making is a crucial issue not only for the individuals who are relying on surrogates, but also for the persons who are acting on behalf of individuals.

   Health information is extremely sensitive information. Health conditions that disrupt mental capacity may require extensive health services and entail the accumulation of large amounts of sensitive information. Individuals relying on substitute decision-makers, such as those lacking legal capacity, are particularly vulnerable. The existence of substitute decision-making powers has far-reaching implications for individuals subject to them, as such powers could be exercised either for the benefit of said individuals, for the benefit of the ultimate decision-maker or, alternatively, for the benefit of third parties. The latter two possibilities risk violating the interests of the individual who is most in need.

   Substitute decision-making authority allows a surrogate to step into the shoes of the individual. This authority creates extensive powers--essentially the exercise of all health information rights of the individual. Health information privacy legislation prescribes not only the categories of substitute decision-makers but also the rights and powers that surrogates can exercise on behalf of individuals. Health information rights and powers include the right of access, correction and amendment, as well as the right to make express wishes and give instructions. They also include the right to consent, refuse consent, or revoke consent for the collection, use and disclosure of health information, and the right to seek remedies for breaches of access and privacy.

   It is acknowledged that substitute decision-making provisions do not exist in privacy law alone. Similar provisions can also be found in family law, (1) See e.g. Family Law Act, S.A. 2003, c. F-4.5. elder law, child welfare, youth criminal justice, civil litigation and administration of estates law. Furthermore, this legal nexus gives rise to many corollary issues such as the basis of authority in common law principles like parens patriae, the assessment of capacity and the criteria for consent. Such corollary issues are beyond the scope of this discussion, however. This paper will focus on the Health Information Act (HIA or the Act) (2) as the benchmark for a comparison of Alberta's substitute decision-making provisions with those of other health information privacy regimes.

2. Health Information Privacy Legislation in Alberta

   Substitute decision-makers for health information are addressed in HIA in Alberta, which has now been in force since April 25, 2001; that is, for almost four years. HIA lists the categories of persons who can exercise rights or powers of individuals as follows:

   104(1) Any right or power conferred on an individual by this Act may be exercised (a) if the individual is 18 years of age or older, by the individual, (b) if the individual is under 18 years of age and understands the nature of the right or power and the consequences of exercising the right or power, by the individual, (c) if the individual is under 18 years of age but does not meet the criterion in clause (b), by the guardian of the individual, (d) if the individual is deceased, by the individual's personal representative if the exercise of the right or power relates to the administration of the individual's estate, (e) if a guardian or trustee has been appointed for the individual under the Dependent Adults Act, by the guardian or trustee if the exercise of the right or power relates to the powers and duties of the guardian or trustee, (f) if an agent has been designated under a personal directive under the Personal Directives Act, by the agent if the directive so authorizes, (g) if a power of attorney has been granted by the individual, by the attorney if the exercise of the right or power relates to the powers and duties conferred by the power of attorney, (h) if the individual is a formal patient as defined in the Mental Health Act, by the individual's nearest relative as defined in that Act if the exercise of the right or power is necessary to carry out the obligations of the nearest relative under that Act, or (i) by any person with written authorization from the individual to act on the individual's behalf. 104(2) Any notice required to be given to an individual under this Act may be given to the person entitled to exercise the individual's rights or powers referred to in subsection (1). (3) The HIA list of health information decision-makers sets out the categories of persons who can make decisions for themselves as well as on behalf of other individuals. HIA allows substitute decision-makers to exercise all rights and powers that individuals could exercise under the Act. However, the powers that can be exercised by a surrogate may be restricted in the instrument that creates the authority, for example in the guardianship order, personal directive, power of attorney or enactment.

   The specific enactments mentioned in section 104(1) of HIA provide the detailed explanation about who can act as substitute decision-makers under the various pieces of legislation mentioned. For example, the "nearest relative" of a formal patient is defined in the Mental Health Act (4) as follows:

   1 In this Act, ... (i) "nearest relative" means, with respect to a formal patient, the adult person first listed in the following paragraphs, relatives of the whole blood being preferred to relatives of the same description of the half-blood and the elder or eldest of 2 or more relatives described in any subclause being preferred to the other of those relatives regardless of gender: spouse; son or daughter; father or mother; brother or sister; grandfather or grandmother; grandson or granddaughter; uncle or aunt; nephew or niece; or (ii) any adult person the board designates in writing to act as the nearest relative if there is no nearest relative within any description in subclause (i) or if, in the opinion of the board, the nearest relative determined under subclause (i) would not act or is not acting in the best interest of the formal patient; (5) The surrogate decision-making provision in section 104(1)(d) of HIA has been amended to allow personal representatives to exercise rights on behalf of deceased minors for the purpose of administration of the individual's estate. (6) This amendment was made after the finding of Frank Work, Information and Privacy Commissioner, in Order H2002-004, (7) that HIA did not allow custodians to provide access to personal representatives of deceased minors. The earlier provision in HIA that applied to personal representatives said:

   104(1) Any right or power conferred on an individual by this Act may be exercised ... (d) if the individual is deceased and was 18 years of age or over immediately before death, by the individual's personal representative if the exercise of the right or power relates to the administration of the individual's estate. (8) In that Order, the Commissioner recommended an amendment to the Act to allow custodians to provide access to and disclosure of the health information of deceased minors.

   The HIA amendment broadened the provision to enable custodians to provide access and personal representatives to exercise powers on behalf of deceased individuals regardless of whether the deceased individual was an adult or a minor under 18 years of age. A concurrent HIA amendment created an additional category of disclosure that allows custodians to give information to family members of deceased individuals in certain circumstances (s. 35(1)(d.1)). In a Press Release, the Commissioner praised these amendments, saying:

   Overall, I am very pleased to see these amendments, as they achieve the balance of allowing appropriate access to health information, while still protecting the privacy of deceased individuals. (9) The issue of substitute decision-makers in HIA was considered during the three year legislative review that was conducted by an all-party committee of the Legislature, entitled the Select Special Health Information Act Review Committee (the Committee). The Committee issued a Consultation Guide (10) that asked participants to consider specific questions that included, "Is the list of substitute decision makers appropriate? If not, please explain and provide any suggestions for improvement." (11)

   The Committee was advised that the issue of substitute decision-makers was concurrently under consideration (12) in the draft preliminary pan-Canadian Health Information Privacy and Confidentiality Framework (the "Framework"). (13) The Framework has been described as "a set of harmonized principles and provisions for the collection, use, disclosure and protection of personal health information". (14) The Framework is being developed pursuant to a 2001 harmonization resolution of the ministers of health to work towards developing harmonized principles and legislative approaches to the protection of the privacy of health information across Canada. (15)

   The Committee was asked to conduct a focussed review of several matters, including "consideration of whether amendments to the Health Information Act are required to address the intent to harmonize rules in the pan-Canadian health information privacy and confidentiality framework." (16) The significance of the Framework to the legislative review process was described as follows:

   So this pan-Canadian framework has put together core rules in these types of areas for consultation and debate. The intent is that at the time of the review of the Health Information Act and looking at specific areas that could be subject to amendment, it will be important to take a look at the...