Substitute Decision-making
| Author | Halyna N. Perun; Michael Orr; Fannie Dimitriadis |
| Pages | 229-270 |
229
1 Capacity is dealt with in detail in Section F, below.
2 S.O. 2004, c. 3, Sch. 1 [PHIPA].
3PHIPA, s. 23(1).
4Ibid., s. 5(1). The definition of “substitute decision-maker” is qualified by the words
“unless the context requires otherwise.” When PHIPA refers to a substitute decision-
A. GENERALLY
In certain situations, a patient may not be able to consent to a health information
custodian’s collection, use, or disclosure of personal health information about the
patient. The patient may be mentally incapable,1or, the patient may be deceased.
Alternatively, where the patient is mentally capable, but for some reason is unable
or prefers not to provide consent personally, the patient may authorize another
person to act on his or her behalf. In such situations where a health information
custodian requires consent, be it express or implied, under the Personal Health
an may obtain consent from the patient’s substitute decision-maker for the custo-
dian’s collection, use, or disclosure of the patient’s personal health information.3
PHIPA defines a “substitute decision-maker” to mean, in relation to a
patient, a person who is authorized under PHIPA to consent on behalf of the
patient to the collection, use, or disclosure of personal health information
about the patient.4
6Substitute
Decision-making
Guide to the Ontario Personal Health Information Protection Act
230
The rules in PHIPA that enable a health information custodian to turn to
another person for consent on behalf of a patient address a significant gap that
exists in the Personal Information Protection and Electronic Documents Act.5
While the general rule in PIPEDA is that an organization that is subject to that
Act requires the knowledge and consent of an individual for the collection, use,
or disclosure of personal information,6PIPEDA does not provide sufficient
rules for obtaining consent from individuals who are incapable.7
PIPEDA also does not provide rules for obtaining consent for the handling of
records of deceased individuals. The CSA Privacy Code, attached as Schedule 1 to
PIPEDA, states that “consent can also be given by an authorized representative
(such as a legal guardian or a person having power of attorney),”8but PIPEDA
itself does not provide organizations with further rules as to who is authorized to
make decisions on behalf of others. In many cases, individuals will not have legal
guardians or attorneys under a power of attorney to act on their behalf.
Health care stakeholders criticized this absence of a substitute decision-
making scheme in PIPEDA and cited this void as a critical reason as to why the
PIPEDA rules would not be appropriate for the health sector.9
maker of an individual within the meaning of the Health Care Consent Act, 1996, S.O.
1996, c. 2, Sch. A [HCCA], the phrase means someone other than a person who is
authorized to consent to the collection, use, or disclosure of the patient’s personal
health information. Sections 5(2), (3), & (4) of PHIPA deem a substitute decision-
maker who is authorized to make treatment decisions, long-term care admission deci-
sions, or personal assistance service decisions, as the case may be, under the HCCA
as the substitute decision-maker for personal health information decisions. Accord-
ingly, the HCCA substitute decision-maker has a particular role as substitute decision-
maker for information decisions. This is further discussed in Section B(6)(a) below.
5 S.C. 2000, c. 5 [PIPEDA].
6Ibid., s. 7.
7 Interestingly, the “note” in Principle 3, Consent, of the CSA Privacy Code, Schedule 1
to PIPEDA, which recognizes that in some circumstances, personal information may
be collected, used, or disclosed without consent because “seeking consent may be
impossible or inappropriate when the individual is a minor, seriously ill, or mentally
incapacitated,” is not incorporated as part of PIPEDA: PIPEDA, s. 7(1).
8 CSA Privacy Code, Schedule 1 to PIPEDA, above note 5, at 4.3.6.
9 Mary Catherine Lindberg, Assistant Deputy Minister, Health Services Division,
Ontario Ministry of Health, noted to the Standing Committee on Social Affairs, Sci-
ence and Technology regarding Bill C-6, Personal Information Protection and Electronic
Documents Act, that “[a] critical part of our [Ontario] proposed legislation is a scheme
that would allow substitute consent for identified individuals who may consent to dis-
closure of personal health information on behalf of incapable or deceased individuals.
Provisions for such a scheme are noticeably absent in Bill C-6”(2 December 1999).
Online:
e.htm?Language=E&Parl=36&Ses=2&comm_id=47>.
Substitute Decision-Making 231
B. THE SUBSTITUTE DECISION-MAKING FRAMEWORK IN
PHIPA
1) Generally
PHIPA identifies five categories of circumstances in which substitute decision-
makers can exercise their powers with respect to personal health information
on someone else’s behalf:
• where a capable patient, who is at least sixteen years old, authorizes in writ-
ing a substitute decision-maker to make personal health information deci-
sions on his or her behalf.10
• where the patient is deceased.11
• where other Acts confer authority on persons to act on behalf of others with
respect to personal health information decisions.12
• where the patient is a capable child under the age of sixteen.13
• where the patient is mentally incapable of making his or her own informa-
tion decisions.14
A discussion of each of these categories follows.
2) Decision-maker for the Capable Patient, Sixteen Years and
Older
Where a patient is capable15 and at least sixteen years old, anyone who is at least
sixteen years old and capable16 who the patient has authorized to act on his or
her behalf may make a personal health information decision on behalf of the
patient.17 For example, where a patient has executed a continuing power of
attorney for property authorizing another individual to administer his or her
financial affairs that is effective even when the patient is capable, that person
may make a decision concerning the patient’s personal health information,
10 PHIPA, s. 23(1)[1][ii].
11 Ibid., s. 23(1)[4].
12 Ibid., s. 23(1)[5].
13 Ibid., s. 23(1)[2].
14 Ibid., s. 23(1)[3].
15 Capacity is discussed below in Section F.
16 These age and capacity requirements only apply where the person is a natural person.
17 PHIPA, s. 23(1)[1][ii].
Guide to the Ontario Personal Health Information Protection Act
232
where the authority of such attorney extends to such information.18 The attor-
ney may need to authorize the disclosure of personal health information in
order to administer some aspect of the patient’s financial affairs in the event of
the patient’s absence from Ontario, such as ensuring that accident benefits do
not lapse. This category recognizes that a patient may authorize a corporate
entity, such as a financial trust company, to act in respect of some of his or her
information decisions; and, accordingly, this category of substitute decision-
makers is not limited to natural persons. To authorize a substitute decision-
maker to act on a patient’s behalf with respect to personal health information,
a patient must do so in writing. The permission does not need to be a formal
document such as a power of attorney; a letter or form can suffice.
3) Decision-maker for the Deceased Patient
If a patient has died, the deceased patient’s estate trustee or the person who has
assumed responsibility for the administration of the estate, if the estate does
not have an estate trustee, is authorized to give, withdraw, or withhold consent
to the collection, use, or disclosure of the deceased patient’s personal health
information.19
“Estate trustee” is not defined in PHIPA; however, its meaning can be
extrapolated from the explanation of the phrase as set out in the Courts of Jus-
tice Act.20 An “estate trustee,” under that Act, is an up-to-date term that includes
an executor (a person who is specified in the will to carry out the wishes of the
deceased individual as set out in the deceased’s will), an administrator (a per-
son who administers the estate of the deceased individual who dies without a
will or where his or her will cannot be located), or an administrator with the
will annexed (a person who is appointed to administer the deceased individ-
ual’s estate as set out in the will, because the executors named in the will, if
any, cannot be found or are unwilling or unable to act).21
The person “who has assumed responsibility for the administration of the
estate” would include, for example, a person who has been appointed by the
18 Substitute Decisions Act, 1992, S.O. 1992, c. 30, s. 7 [SDA]. Note that a continuing
power of attorney for property may only be granted by an individual who is eighteen
years or older and can authorize an individual who is eighteen years or older to act on
the grantor’s behalf.
19 PHIPA, s. 23(1)[4].
20 The term is defined in Rules of Civil Procedure, R.R.O. 1990, Reg. 194, Rule 74.01,
made under the Courts of Justice Act, R.S.O. 1990, c. C.43.
21 Ibid.
Substitute Decision-Making 233
court as a “litigation administrator” to represent the interests of the deceased’s
estate for the purpose of a lawsuit involving the estate where there is no estate
trustee.22 Further, it appears that the phrase “who has assumed the responsibil-
ity for the administration of the estate” is intended to authorize persons who
are not “estate trustees” and who do not, in fact, have a formal appointment
such as that of a “litigation administrator” but who may for legitimate reasons
have taken on the duty of resolving the deceased patient’s financial or other
affairs, such as where the value of the estate is minimal so that no court
appointment of an estate trustee is pursued. This could be, for example, where
a widow requires a health information custodian to provide confirmation of
death to her husband’s pension plan so that she may begin receiving her
widow’s pension. The widow, as the person who has assumed the responsibil-
ity for her husband’s estate, may authorize the custodian to disclose the
deceased patient’s information to the pension plan.
4) Decision-maker Authorized by an Act
PHIPA allows another person whom an Act of Ontario or Canada authorizes
or requires acting on behalf of a patient to make information decisions under
PHIPA.23 For example, under the Drug and Pharmacies Regulation Act, an agent
of the patient is entitled to a copy of the prescription information.24 An “agent”
is not defined but would appear to mean any one who acts on behalf of the
patient in presenting to or picking up from a pharmacist a prescription for the
patient. The regulation under PHIPA clarifies that such an agent may be the
patient’s substitute decision-maker for the purpose of a consent for the collec-
tion, use, or disclosure of the patient’s personal health information that a phar-
macist requires pertaining to a patient’s prescription.25
5) Decision-maker for a Capable Child under Sixteen
A health information custodian may obtain consent for the collection, use, and
disclosure of a child’s personal health information from the capable child,
22 Ibid, Rule 9.02.
23 PHIPA, s. 23(1)[5].
24 R.S.O. 1990, c. H.4, s. 157(1). Every person in respect of whom a prescription is pre-
sented to a pharmacist to be dispensed, unless otherwise directed by the prescriber, is
entitled to have a copy of it marked as such, furnished to the person, his or her agent,
or a pharmacist acting on behalf of such person or agent.
25 General, O. Reg. 329/04, s. 1(7) [PHIPA Regulation].
Guide to the Ontario Personal Health Information Protection Act
234
regardless of the child’s age.26 Where a child is less than sixteen years of age, a
parent of the child or a children’s aid society or other person who is lawfully
entitled to give or refuse consent in place of the parent (such as a child’s
guardian)27 may also give, withhold, or withdraw consent to the collection, use,
or disclosure of the child’s personal health information on the child’s behalf.28
However, such persons may not exercise this power where the information
relates to treatment about which the child has made a decision on his or her own
behalf under the Health Care Consent Act, 1996,29 or where the information
relates to counseling in which the child has participated on his or her own under
health care practitioner31 who proposes treatment to a child obtains consent from
the child, as opposed to from the parent, where the child is capable.32 Thus, where
the child makes the treatment decision, the parent is not authorized by this sec-
tion in PHIPA to make information decisions on the child’s behalf for that treat-
ment. Where the custodian requires consent to disclose information about the
treatment, the decision about the disclosure is the child’s decision.
Similarly, the Child and Family Services Act permits a service provider33 to
provide a counseling service to a child who is twelve years of age or older with
the child’s consent and without the parent’s consent.34 If the service provider
26 PHIPA, s. 24(4). See discussion of capacity in Section F below.
27 In this Chapter, a reference to a “parent” includes a children’s aid society or other per-
son who is lawfully entitled to give or refuse consent in place of the parent: PHIPA,
s. 23(1)[2]. The word does not include a parent who only has a right of access to the
child: PHIPA, s. 23(2). If a children’s aid society or other person is lawfully entitled to
consent in the place of the parent, the word “parent” does not include the natural parent.
28 PHIPA, s. 23(1)[2].
29 HCAA, above note 4.
30 R.S.O. 1990, c. 11 [CFSA].
31 “Health care practitioner” has a narrower definition in the HCCA than in PHIPA. The
definition includes a naturopath registered as a drugless therapist under the Drugless
Practitioners Act, R.S.O. 1990, c. D.18 and most, but not all, regulated health profes-
sionals. The definition in the HCCA does not include a pharmacist, optician, or dental
technologist. It also does not include social workers, social service workers, or unregu-
lated health care providers. See the HCCA, above note 4, s. 2(1).
32 HCCA, ibid., s. 10.
33 The category of “service provider” in the CFSA, above note 30, defined in s. 3(1) of
that Act, would include some health information custodians, such as children’s men-
tal health centers. The term “service provider” here has a different meaning than in
the Long-Term Care Act, 1994, S.O. 1994, c. 26 [LTCA].
34 CFSA, ibid., s. 28. The section further provides: “… but if the child is less than sixteen
years of age the service provider shall discuss with the child at the earliest appropriate
opportunity the desirability of involving the child’s parent.”
Substitute Decision-Making 235
provided the counseling to the child with the child’s consent, then the provider
(if that provider is a health information custodian) cannot rely on a parent’s
consent to the collection, use, or disclosure of personal health information
related to the counseling where the child consented to the counseling. In these
two situations,35 where the child consented to the treatment or counseling, the
health information custodian may not disclose information about the treat-
ment or counseling, as the case may be, to the child’s parent, unless the child
consented to the disclosure.36
Aside from the circumstances to which these two exceptions apply, a
health information custodian may look for authorization for the collection,
use, or disclosure of personal health information about a child who is under
sixteen from the child’s parent, even where that child is capable. The Act does
not require the custodian to seek authorization from both the parent and the
child, but the Act also does not preclude the custodian from relying on both for
consent.
Where there is a conflict between a capable child and the child’s parent,
the child’s consent with respect to the information prevails.37 PHIPA does not,
however, require the custodian to advise the child of this option, nor is there a
requirement for the custodian to canvass the views of the child. Where the cus-
todian has the parent’s consent, it will likely be the case that, in practice, the
custodian would simply rely on that consent unless a contrary instruction of
the capable child becomes known to the custodian.
This category of substitute decision-making does not include a parent who
only has a right of access to the child.38 In this way, PHIPA recognizes that
decision-making with respect to a child’s information rests with the custodial
parent. Under the Children’s Law Reform Act39 a parent with only access to a
child does not have an automatic right to make decisions on behalf of his or
her child. The Children’s Law Reform Act gives a person having access to the
child the same right as a parent to make inquiries and to be given information
35 This rule, however, does not appear to apply where the child is incapable of informa-
tion decisions. See Section B(6)(a) below.
36 In some situations, the health information custodian would, nonetheless, be able to
disclose this personal health information without the child’s consent to that parent,
where a disclosure without consent provision applied to the situation, such as PHIPA,
s. 40(1) (risk of harm). For disclosures without consent, see Chapter 10.
37 PHIPA, s. 23(3).
38 Ibid., s. 23(2).
39 R.S.O. 1990, c. 12, s. 20(2) [CLRA].
Guide to the Ontario Personal Health Information Protection Act
236
as to the health, education, and welfare of the child.40 That Act, however, does
not authorize a health information custodian to disclose the child’s personal
health information about the child to the parent.41 Where a parent with only a
right of access to the child requires personal health information from the cus-
todian about the child, the parent may request the custodial parent to author-
ize the release of such information about the child to the access parent. The
access parent can enforce this request by way of court order if the custodial par-
ent does not comply.42
6) Decision-maker for the Incapable Patient
a) A Substitute Decision-maker under the Health Care Consent Act, 1996
Where the patient is incapable of consenting to the collection, use, or disclo-
sure of his or her personal heath information, as the case may be,43 the Act pro-
vides a ranked list of persons to whom the health information custodian would
turn for consent to the collection, use or disclosure of the patient’s personal
health information on behalf of that patient under PHIPA.44 However, before
a health information custodian may turn to this list, the custodian must first
determine whether the incapable patient has a substitute decision-maker
under the Health Care Consent Act, 1996.45
Under the Health Care Consent Act, 1996, a substitute decision-maker
makes decisions on behalf of a patient about the provision of treatment to the
patient, the patient’s admission to a care facility, and/or the provision of per-
sonal assistance services to the patient within a care facility.46 These substitute
decision-makers are also authorized to make decisions about information that
has a connection to the decision they are responsible for under the Health Care
Consent Act, 1996.47 A substitute decision-maker who is making decisions on
40 Ibid., s. 20(5).
41 Even if it is arguable that the health information custodian would be authorized to
disclose to a parent who is entitled to information under the CLRA, the rules in
PHIPA prevail in the event of a conflict between its provisions and those of the
CLRA: PHIPA, ss. 7(2) & (3) and PHIPA Regulation, above note 25, s. 1(5).
42 CLRA, above note 39, s. 20(7).
43 See Section F below, for an explanation of how the patient is determined to be mental-
ly incapable with respect to the collection, use, or disclosure of personal health infor-
mation.
44 PHIPA, s. 23(1)[3], s. 26. For a discussion about the list, see next section.
45 PHIPA, s. 26(11).
46 HCCA, above note 4, s. 9 (treatment), s. 39 (admission to a care facility), and s. 56
(personal assistance services). “Care facility” is defined in s. 2(1) of the HCCA.
47 PHIPA, ss. 5(2) and 23(1)[3].
Substitute Decision-Making 237
behalf of an incapable patient under the Health Care Consent Act, 1996 is
“deemed” to be a substitute decision-maker of the patient for the collection,
use, and disclosure of personal health information about the patient where the
collection, use, or disclosure is “necessary for, or ancillary to” a decision under
that Act.48
Such a substitute decision-maker ranks above all other persons in the list
of substitute decision-makers for an incapable patient under PHIPA, with
respect to such a decision.49 While the word “necessary” on its own, as a mod-
ifier, would give a narrower scope to the decision-making authority, it seems
that the inclusion of the word “ancillary”50 gives the Health Care Consent Act,
1996 substitute decision-maker a somewhat wider scope of authority for infor-
mation decisions related to the decisions for which the substitute is responsi-
ble under the Health Care Consent Act, 1996.
For example, where a health information custodian is treating an inca-
pable patient, based on a substitute decision-maker’s consent to a treatment
plan obtained under the Health Care Consent Act, 1996, and requires approval
for payment from the individual’s insurance company for a particular service
or device (such as for dental work or for prosthetics) the custodian can request
the substitute decision-maker who is authorized to consent to the treatment
plan to also consent to the release of information to the insurance company for
the purpose of obtaining confirmation that the service or device will be paid for
by the insurer.
The substitute decision-maker under the Health Care Consent Act, 1996
would not have authority under PHIPA to make every information decision per-
taining to the individual, as the individual may be capable of making some deci-
sions in question on his or her own.51 Further, the consent that the custodian
48 Ibid., s. 5(2), (3), & (4).
49 Ibid., s. 26(11). For a discussion about the list see next section. Note that a provision in
the HCCA, above note 4, s. 44(1), specifying that authority to consent on an incapable
person’s behalf to his or her admission to a care facility includes authority to make
decisions that are necessary and ancillary to the admission, was amended in Bill 31 by
s. 84(9) of PHIPA to clarify that such information does not apply to personal health
information within the meaning of PHIPA essentially because such authority has
been preserved for this type of substitute decision-maker under the HCCA under s.
5(3) of PHIPA.
50 Meaning “supplementary; subordinate,” (B.A. Garner, ed., Black’s Law Dictionary, 8th
ed. (St. Paul, Minn.: Thomson West, 2004) at 95); or “providing subsidiary support;
… additional; supplementary” from Latin ancillaris, from ancilla “maidservant”) (Com-
pact Oxford English Dictionary, online: ).
51 Note PHIPA, s. 21(2).
Guide to the Ontario Personal Health Information Protection Act
238
may require under PHIPA for a collection, use, or disclosure of a patient’s per-
sonal health information may have no connection to the treatment, admission
to a long-term care facility, or personal assistance service decision, for which the
Health Care Consent Act, 1996 substitute decision-maker has responsibility.
b) The List of Substitute Decision-makers
Where the incapable patient does not have a substitute decision-maker author-
ized to make decisions under the Health Care Consent Act, 1996, or where the
authority of such a substitute decision-maker does not extend to the informa-
tion decision at hand, the health information custodian may turn to a ranked
list of persons set out in PHIPA for consent to the collection, use, or disclosure
of the patient’s personal health information on behalf of the patient.52
This list, in order of priority, includes the following persons:
• The patient’s guardian of the person or guardian of property, if the consent
relates to the guardian’s authority to make a decision on behalf of the patient.53
• The patient’s attorney for personal care or attorney for property, if the consent
relates to the attorney’s authority to make a decision on behalf of the patient.54
• The patient’s representative, as appointed by the Consent and Capacity
Board.55 The representative can either be appointed on the application of the
incapable patient or on the application of the person wishing to become a
representative.56
52 PHIPA, s. 23(1)[3], s. 26.
53 PHIPA, s. 26(1)[1]. A guardian is a person appointed by the court to act on the
patient’s behalf in various respects under the provisions of the SDA, above note 18.
That Act, in section 15, also creates statutory guardians for patients of psychiatric facil-
ities found incapable of managing property.
54 PHIPA, s. 26(1)[2]. An individual may appoint an attorney for property or personal
care or both in accordance with the provisions of the SDA, ibid. Where an individual,
to whom personal health information relates, appointed a representative under s. 36.1
of the Mental Health Act, R.S.O. 1990, c. M.7 [MHA] with respect to clinical records
compiled in the psychiatric facility, before 1 November 2004, that representative is
deemed, under PHIPA, s. 26(8) to have the same authority as an individual in this
paragraph. Sections 26(8)–)10) of PHIPA have implications only with respect to psy-
chiatric facilities.
55 PHIPA, s. 26(1)[3]. The Consent and Capacity Board is a tribunal continued under
s. 70(1) of the HCCA, above note 4, and it has jurisdiction to hear matters pertaining
to that Act, the MHA, ibid., the SDA, ibid., and PHIPA.
56 PHIPA, ss. 27(1) & (2) (Board Application Forms P3 and P4 respectively). In such an
application, the patient is deemed to have applied for a review of the determination of
incapacity, unless the Board has determined the patient’s capacity within the previous
six months (PHIPA Regulation, above note 25, s. 10). In considering whether to
appoint a representative, the Board must be satisfied that the patient to whom the per-
Substitute Decision-Making 239
• The patient’s spouse or partner.57 “Spouse” is defined in PHIPA58 to mean
either of two persons who, (a) are married to each other, or (b) live together
in a conjugal relationship outside marriage and (i) have cohabited for at
least one year, (ii) are together the parents of a child, or (iii) have together
entered into a cohabitation agreement under section 53 of the Family Law
Act.59 “Partner” means “either of two persons who have lived together for at
least one year and have a close personal relationship that is of primary
importance in both persons’ lives.”60 The word “partner” would include, for
example, two very close friends, or even two relatives, who have lived togeth-
er for a year and who are not in a conjugal relationship.
• A child of the patient or the parent of the patient, a children’s aid society or
other person lawfully entitled to give or refuse consent in the place of the
parent.61 This category does not include a parent with only a right of
access.62 Further, if a children’s aid society or other person is lawfully enti-
tled to consent in the place of the parent, the parent may not give, withhold,
or withdraw consent on the patient’s behalf.
• A parent of the patient with only a right of access to the patient.63
• A brother or sister of the patient.64
sonal health information relates does not object to the appointment, the representa-
tive agrees to the appointment, is at least sixteen years old and is capable, and that the
appointment is in the best interests of the patient. It should also be noted that the
Board may, on any person’s application, terminate an appointment, where, for exam-
ple, the appointment is no longer in the patient’s best interests or now the patient has
a guardian under the Substitute Decisions Act or an attorney for property or for person-
al care, with authority to make the information decisions required on behalf of the
incapable patient. Where a representative was appointed under s. 36.2 of the Mental
Health Act that representative can continue to act on the incapable patient’s behalf as
if he or she were the patient’s representative appointed under s. 27 of PHIPA:
PHIPA, s. 28. As for all applications to the Board under PHIPA, the composition of
the panels to hear an application, the timelines for hearings, the patient’s right to
counsel, and appeal rights are as those set out in the HCCA (PHIPA, s. 27(9)) (see
Section M below).
57 PHIPA, s. 26(1)[4].
58 Ibid., s. 2, definition of “spouse”; note that two persons are spouses in this definition
whether or not they are of opposite sex to each other.
59 R.S.O. 1990, c. F.3.
60 PHIPA, s. 2, definition of “partner.”
61 Ibid., s. 26(1)[5].
62 Ibid.
63 Ibid., s. 26(1)[6].
64 Ibid., s. 26(1)[7].
Guide to the Ontario Personal Health Information Protection Act
240
• Any other relative.65 A “relative” is a person related by blood, marriage, or
adoption.66
• The Public Guardian and Trustee.67
c) Choosing a Substitute Decision-maker from the List
The health information custodian cannot “shop around” for a substitute deci-
sion-maker to act on behalf of an incapable patient. In locating a substitute
decision-maker, PHIPA requires the custodian to start at the top of the list and
work down until the first qualified substitute is located.68 In order for a person
to be qualified as a substitute decision-maker for an incapable patient for infor-
mation decisions from this list, the person must be all of the following:
• capable;69
• at least sixteen years of age, or the parent of the patient to whom the infor-
mation relates;
• not prohibited by a court order or a separation agreement from having access
to the patient or from giving or refusing consent on the patient’s behalf;
• available; and
• willing to assume the responsibility of making a decision as to whether or
not to consent.70
A person is “available” if “it is possible, within a time that is reasonable in the
circumstances, to communicate with the person and obtain a consent.”71
PHIPA does not explain what would be reasonable in the circumstances.72 This
will depend on the nature of the decision to be made and the timeframe in
which it needs to be made. “Available” does not mean that the person must be
physically present. The health information custodian may contact the appro-
priate substitute decision-maker by telephone, for example.
65 PHIPA, s. 26(1)[8].
66 Ibid., s. 2, definition of “relative.”
67 Ibid., ss. 26(6) & (7). The Public Guardian and Trustee is an officer of the Legislature
continued under the Public Guardian and Trustee Act, R.S.O. 1990, c. P.51. The Office
of the Public Guardian and Trustee is part of the Family Justice Services Division of
the Ministry of the Attorney General. The Public Guardian and Trustee has one
Guardianship office and five regional treatment decision units. See online:
68 Ibid., s. 26(4) provides that “A person described in a paragraph of subsection [26]1
may consent only if no person described in an earlier paragraph meets the require-
ments of subsection [26]2.”
69 Capacity is explained in Section F, below.
70 PHIPA, s. 26(2).
71 Ibid., s. 26(3).
72 For a discussion of “reasonable,” see Chapter 4, Section C.
Substitute Decision-Making 241
Upon locating a proposed substitute decision-maker from the list, PHIPA
“entitles” the custodian (that is, gives the custodian the right) to rely on certain
assertions of the proposed substitute decision-maker, unless it is not reason-
able to do so in the circumstances.73 First of all, the custodian is entitled to rely
on the assertion of the person that the person is, in fact, one of the persons in
the list.74 Further, the custodian is entitled to rely on statements by the pro-
posed substitute decision-maker that no other person described in an earlier
paragraph or of the same paragraph of the list of potential substitute decision-
makers exists, or, although such a person exists, the other person is neither a
guardian nor an attorney and would not object to the proposed substitute deci-
sion-maker making a decision.75 The custodian may also rely on the assertion
made by the proposed substitute decision-maker that he or she is at least six-
teen years of age or the parent of the patient and is not prohibited by a court
order or a separation agreement from having access to the patient or from giv-
ing or refusing consent on the patient’s behalf.76
d) The Role of the Public Guardian and Trustee
The Public Guardian and Trustee may make a decision to consent to the collec-
tion, use, or disclosure of a patient’s personal health information where two or
more persons who are equally ranked disagree about whether to consent,77 or
where no other person on the list is qualified to give or refuse consent.78 The
Public Guardian and Trustee’s involvement is at the discretion of that office.
This approach is different from the approach taken in the Health Care Consent
Act, 1996, where the Public Guardian and Trustee must make a decision as to
whether to consent to or refuse treatment on behalf of an incapable patient
where two or more persons who are equally ranked disagree or where no other
person on the list is qualified.79
73 Ibid. See Section C below for a discussion of determining the authority of a substitute
decision-maker.
74 PHIPA, s. 71(4)(b). See further about determining whether the person is authorized to
act in Section C below.
75 PHIPA, ss. 26(5) and 71(4)(d). Where there is more than one person in a particular
category, such as a number of brothers and sisters, one of them may be chosen as the
spokesperson for the group. If the persons in the category cannot agree, the custodian
may turn to the Public Guardian and Trustee for a decision: see further in Section B(6)(d).
76 PHIPA, ss. 26(2) and 71(4)(c).
77 Ibid., s. 26(7).
78 Ibid., s. 26(6).
79 HCCA, above note 4, ss. 20(5) & (6). The Public Guardian and Trustee is also
required under the Health Care Consent Act, 1996 to make a decision about an admis-
sion of a patient to a long-term care facility in similar circumstances (HCCA, s. 41).
Guide to the Ontario Personal Health Information Protection Act
242
There may be instances, therefore, where the Public Guardian and Trustee
will refuse to become involved. In such cases, if there is no one else that can
be found or appointed to act as the substitute decision-maker for information
decisions on behalf of the incapable patient, the health information custodian
will not be in a position to collect, use, or disclose that patient’s personal health
information, where consent is required. This result is likely to be relatively
rare. First of all, the Public Guardian and Trustee would, in fact, be involved in
making information decisions on behalf of a patient for whom the Public
Guardian and Trustee is already deciding about treatment, placement into a
care facility, or personal assistance services under the Health Care Consent Act,
1996, or where the Public Guardian and Trustee is a guardian or attorney of the
patient under the provisions of the Substitute Decisions Act, 1992.80 Further,
where the Public Guardian and Trustee is not involved with the patient in such
a way, and where no spouse, partner, or relative has been located, the Consent
and Capacity Board could appoint a friend or caregiver as the patient’s repre-
sentative, if the custodian needs to obtain a consent under PHIPA for the col-
lection, use, or disclosure of the patient’s personal health information.81
C. DETERMINING WHETHER A PERSON IS AUTHORIZED TO
ACT
PHIPA recognizes that a health information custodian may need to disclose
some personal health information, without consent, in order to locate a substi-
tute decision-maker. A health information custodian may disclose personal
health information about a patient for the purpose of contacting a relative,
friend, or potential substitute decision-maker of the patient, if the patient is
The involvement of the Public Guardian and Trustee for decision-making on behalf of
an incapable patient with respect to personal assistance services in long term-care
facilities, in the Health Care Consent Act, 1996, is discretionary (HCCA, s. 58).
80 The Substitute Decisions Act, 1992 provides a way to appoint the Public Guardian and
Trustee as a guardian of property or of person. The Public Guardian and Trustee can
also be an attorney under a continuing power of attorney for property or under a
power of attorney for personal care, on consent of the Public Guardian and Trustee.
The Public Guardian and Trustee also has a function as statutory guardian of property
for psychiatric patients found mentally incapable of managing their finances. Further,
a substitute decision-maker who is authorized to make decisions under the Health
Care Consent Act, 1996 with respect to the patient is deemed to be the patient’s substi-
tute decision-maker for information decisions under PHIPA.
81 PHIPA, ss. 27(1) & (2), see further above note 56.
Substitute Decision-Making 243
injured, incapacitated, or ill and unable to give consent personally.82 Once a
potential substitute decision-maker is located, the health information custodi-
an must decide whether the custodian may rely on this person’s consent for
the collection, use, or disclosure of personal health information on behalf of
the patient.
As set out above, there are a number of ways in which a person may be
authorized to be the substitute decision-maker for a patient. In determining
whether a particular person is authorized to be the substitute decision-maker
for a patient, a health information custodian is entitled to rely on the accuracy
of a person’s assertion that he or she is entitled to act as the patient’s substi-
tute decision-maker under PHIPA, unless it is not reasonable to do so in the
circumstances.83 For example, where a person claiming to be the substitute
decision-maker for an incapable patient presents him- or herself to the custo-
dian where the custodian has had no connection with the patient for some
time, and may not be in a position to decide whether or not the patient is,
indeed, incapable, the custodian may apparently rely on the person’s assertion
that the patient has been determined incapable by another custodian, unless it
is not reasonable to do so in the circumstances.84
Such an entitlement does not mean, however, that in all cases the custodi-
an should simply proceed to rely on the person as the substitute decision-
maker on the basis of a statement alone. It would be prudent to ensure that the
person making the assertion records the assertion on a document that the per-
son signs, together with relevant details; for example, the name of the custodi-
an who determined that the patient was incapable and the date of the
determination. A custodian may also choose to require the person to provide
identification. These steps are not specifically required by PHIPA, but keeping
such records will allow a custodian to provide information in support of the
reasonableness and lawfulness of his or her conduct, in case, in the future, the
custodian’s actions based on the consent or direction of the substitute decision-
maker are challenged.
82 PHIPA, s. 38(1)(c). This provision is reviewed in Chapter 10, Section D.
83 PHIPA, s. 71(4)(b).
84 Evidently, the custodian is entitled to rely on the assertion of a person who indicates
that he or she is entitled to consent on behalf of a patient, which in the case of a sub-
stitute decision-maker for an incapable person under s. 26 would necessarily include
the assertion that the patient has been determined to be incapable by a health infor-
mation custodian. This entitlement to rely on the substitute decision-maker’s asser-
tion would appear to operate despite the provision in PHIPA, s. 21(4) that provides
that a patient is presumed capable, unless it is unreasonable in the circumstances to
accept the assertion.
Guide to the Ontario Personal Health Information Protection Act
244
In many situations, a person’s authority to act on a patient’s behalf in
PHIPA will stem from a legal document, such as a court order for guardian-
ship; a continuing power of attorney for property; a power of attorney for per-
sonal care; or a certificate of appointment of an estate trustee. Where a person
claims to be the patient’s substitute decision-maker on the basis of one of these
types of documents, it would be prudent for the custodian to request to see a
copy of the document as proof of authority. However, PHIPA does not specifi-
cally require the custodian to check the authenticity of the document provided.
Further, it would be prudent for a custodian to ask the proposed substitute
decision-maker whether that person has the authority to make the decision for
the collection, use, or disclosure of personal health information in question.
Just because a person is the patient’s guardian of property does not necessari-
ly mean that the guardian is, in fact, authorized to make a particular informa-
tion decision; this would depend on the scope of the guardian’s authority as set
out in the court order itself. Similarly, where the children’s aid society is
involved, the custodian should determine whether the society’s involvement
with the child is that of a parent.85
A custodian should exercise extra caution in a situation involving a child’s
parents who are separated or divorced. In this situation, requiring proof of cus-
tody of the child may be warranted. Unfortunately, a parent may claim the right
to be the child’s substitute decision-maker for motives unrelated to decision-
making for the child’s benefit.
In a situation where a patient is deceased and the estate trustee has not
applied for a certificate of appointment, it may be prudent for the custodian to
ask for a notarized copy of the will attesting to the fact that no one is challeng-
ing the status of this person as an estate trustee. For persons claiming to
assume the responsibility for the administration of the deceased’s estate, it
would be reasonable for the custodian to request documentation in support of
this claim, such as a letter from the person’s lawyer.
Where the custodian has acted reasonably and in good faith in relying on
a person’s assertion that he or she is entitled to act as the patient’s substitute
decision-maker, PHIPAprovides protection for the custodian from litigation in
the event that the assertion is false and the person did not have the authority
to consent to collect, use, or disclose the patient’s information.86 Whether or
85 Under the Child and Family Services Act, the children’s aid society assumes the obliga-
tions of a parent where the child has been made a society or Crown ward (CFSA,
above note 30, ss. 61, 62, & 63). In some cases a children’s aid society may be
involved in a capacity other than as parent.
86 PHIPA, s. 71(1).
Substitute Decision-Making 245
not the custodian would be able to rely on this immunity provision will rest on
the reasonableness of the custodian’s actions in the circumstances with respect
to the assertions made by the apparent substitute decision-maker.
D. AUTHORITY OF A SUBSTITUTE DECISION-MAKER IN
PHIPA
In general terms, the rights and obligations that PHIPA confers on “individu-
als” — to whom this Guide refers as “patients”87 — apply equally to substitute
decision-makers.
1) Authority to Consent
Where a health information custodian requires consent for the collection, use,
or disclosure of a patient’s personal health information under PHIPA, a
patient’s substitute decision-maker may give, withhold, or withdraw the con-
sent.88 PHIPA also authorizes the health information custodian to turn to the
patient’s substitute decision-maker where the custodian requires consent for
the collection, use, or disclosure of a patient’s personal health information
under another Ontario statute.89 This authority is convenient in situations
where the other Act is silent on the person to whom the custodian should turn
for consent in a situation where the subject of the information is incapable.
The same obligations that a health information custodian has with respect
to obtaining a valid consent from a patient apply when the custodian is obtain-
ing the consent from a substitute decision-maker.90 Thus, the custodian may,
for example, rely on a notice describing the purposes of the collection, use, or
disclosure that the custodian posts or makes readily available to the substitute
decision-maker as reasonable belief that the substitute decision-maker knows
the purposes of the collection, use, or disclosure of personal health informa-
87 See Appendix I, Glossary, for explanation of “patient.”
88 PHIPA, s. 23(1).
89 This is based on PHIPA, s. 18(1), which specifically refers to any other Act, and
requires that the consent be “a consent of the individual,” which under PHIPA
includes the consent of a substitute decision-maker on the individual’s behalf. For a
discussion on consent, see Chapter 5.
90 All the rules for consent apply equally to the substitute decision-maker. Therefore, for
example, the consent must be of the substitute decision-maker, it must be knowledge-
able, it must relate to the information, and it must not be obtained through deception
or coercion. Consent may be express or implied, unless PHIPA provides that the con-
sent must be express: see PHIPA s. 18 and the discussion of consent in Chapter 5.
Guide to the Ontario Personal Health Information Protection Act
246
tion, as the case may be.91 Further, where a custodian may imply consent from
a patient, the custodian may imply the consent for the collection, use, or dis-
closure of the patient’s personal health information from the substitute deci-
sion-maker.92 Just as some health information custodians may assume implied
consent from a patient for the collection, use, or disclosure of the patient’s per-
sonal health information for the purposes of providing or assisting in the pro-
vision of health care, those custodians may also assume an implied consent
from the substitute decision-maker.93
2) Authority to Withdraw the Consent
Where a substitute decision-maker consents to the collection, use, or disclosure
of a patient’s personal health information, the substitute decision-maker may
also withdraw the consent94 in the manner specified in PHIPA. In addition, the
substitute decision-maker may place a condition on the consent in the same way
and to the same degree as a patient is authorized to do under the Act.95
Where the health information custodian initially took an action concern-
ing the patient’s personal health information with the patient’s consent, the
substitute decision-maker may withdraw that consent if the patient is no
longer capable with respect to the information decision. Conversely, where the
substitute decision-maker made a decision about the collection, use, or disclo-
sure of the patient’s personal health information, the patient can make a dif-
ferent decision, if the patient becomes capable of making the decision.96
91 PHIPA, ss. 18(5) & (6). Of course, a notice made available to the patient but not the
substitute decision-maker cannot be a basis for concluding that the substitute deci-
sion-maker had knowledge of the purpose for the collection, use, or disclosure, as the
case may be; and vice versa. The notice should also inform the individual that the indi-
vidual can withdraw or withhold consent: (s. 18(5)(b)). This type of statement would
also inform the substitute decision-maker in an applicable case.
92 PHIPA, ss. 18(2) & (3).
93 Ibid., s. 20(2). See Chapter 5, Section F(3).
94 Ibid., s. 23(1).
95 Ibid., ss. 19(1) & (2); s. 20(2). See the discussion of withdrawal of consent and condi-
tions on consent in Chapter 5, Section E. Note that this and the next examples in the
text assume that the authority of the substitute decision-maker arises as a result of a
patient’s incapacity, as is often the case. Of course, it is also possible to have a substi-
tute decision-maker acting for a capable patient, and in such a case the patient has
concurrent decision-making authority. In making an information decision on behalf
of the patient, the substitute decision-maker is required to take into consideration fac-
tors that are specified in PHIPA and outlined further in Section E below.
96 The patient may be capable at one time and incapable at another. See the discussion
on capacity in Section F below.
Substitute Decision-Making 247
3) Authority to Request, Give an Instruction, or Take a Step
A substitute decision-maker, who is authorized to consent on behalf of a patient
to the collection, use, or disclosure of personal health information, is also
authorized to make a request, give an instruction, or take a step on behalf of the
patient where the Act permits or requires the patient to take such a step or other
action.97 For example, a substitute decision-maker is authorized to expressly
instruct a health information custodian not to use or disclose the patient’s per-
sonal health information for health care purposes.98 Where a capable patient
gives such an instruction, the substitute decision-maker may change the
instruction, if that patient becomes incapable.99 Further, a substitute decision-
maker who is authorized to consent on behalf of a patient to the collection, use,
or disclosure of personal health information can make an access request100 on
behalf of the patient to the patient’s record of personal health information.
Where the health information custodian grants the access, the substitute deci-
sion-maker also has the right to request that the record be corrected.101
4) Obligation of the Health Information Custodian to Notify
Since the substitute decision-maker in essence “stands in the shoes of” the
patient for whom the substitute decision-maker is authorized to make deci-
sions, where PHIPA requires the health information custodian to notify the
patient in certain situations under the Act, it would be reasonable to conclude
that where the patient is incapable and has a substitute decision-maker, the cus-
todian should notify the substitute decision-maker, in addition to the patient.
For example, a health information custodian should notify a substitute deci-
sion-maker where the custodian uses or discloses the patient’s personal health
information, without consent, in a manner that is outside the scope of the
description of the custodian’s information practices, as set out in the public
written statement.102 Further, the custodian should notify a substitute decision-
maker if the patient’s information is stolen, lost, or accessed by unauthorized
97 PHIPA, s. 25.
98 Ibid., ss. 37(1)(a), 38(1)(a), and 50(1)(e): This express instruction is often referred to as
the “lock box” and is outlined in Chapter 7.
99 See further about capacity in Section F below.
100 PHIPA, s. 54(1). See Chapter 13 on access to records of personal health information.
101 Ibid., s. 55(1). See Chapter 14 on correction of personal health records.
102 Ibid., s. 16(2). The obligations of health information custodians are outlined in Chap-
ter 4.
103 PHIPA, s. 12(2).
Guide to the Ontario Personal Health Information Protection Act
248
persons.103 Although this obligation is not set out explicitly in PHIPA, to inter-
pret the provisions otherwise would run contrary to the obvious purpose of
those provisions, since there would be limited value in providing such notices
solely to an incapable patient who likely would not be in a position to respond
to the notice.
5) Communicating with the Substitute Decision-maker
Just as the health information custodian is free to communicate with the patient,
nothing in PHIPA prevents the custodian from communicating with the patient’s
substitute decision-maker. PHIPA allows a health information custodian to com-
municate a patient’s personal health information to the patient where the patient
has a right of access to the information, even in the absence of an access
request.104 It would be reasonable to conclude that the custodian could rely on this
statement in PHIPA to disclose information about the patient to the substitute
decision-maker. As the substitute decision-maker could also be authorized to con-
sent to the collection, use, or disclosure of information pertaining to a deceased
patient, the custodian could rely on the authority in this section of PHIPA to dis-
close information to a substitute decision-maker acting for a deceased person.
E. GUIDING THE SUBSTITUTE DECISION-MAKER
1) Factors to Consider
PHIPA guides substitute decision-makers in making decisions on behalf of
capable, incapable, or deceased patients. The factors that a substitute decision-
maker must consider when deciding to consent to a collection, use, or disclo-
sure of personal health information, when withholding or withdrawing
consent, or when providing an express instruction,105 are as follows. First, a
substitute decision-maker must take into consideration the wishes, values, and
beliefs that the substitute decision-maker knows the capable patient holds (or
the incapable or deceased patient held when capable or alive, as the case may
be) and believes the patient would have wanted reflected in decisions made
concerning the patient’s personal health information.106 Further, the substitute
decision-maker must consider whether
104 PHIPA, s. 52(6)(b).
105 Ibid. Under ss. 37(1)(a), 38(1)(a), or 50(1)(e).
106 Ibid., s. 24(1)(a).
Substitute Decision-Making 249
• the benefits from the collection, use, or disclosure of the information out-
weigh the risk of negative consequences occurring as a result of the collec-
tion, use, or disclosure, as the case may be;
• the purpose for which the collection, use, or disclosure is sought can be
accomplished without the collection, use, or disclosure; and
• the collection, use, or disclosure is necessary to satisfy any legal obligation.107
These factors are modeled on the provisions of the Health Care Consent Act,
1996.108
Unlike the approach in the Health Care Consent Act, 1996, however, PHIPA
does not require the substitute decision-maker to strictly adhere to a patient’s
prior capable wishes unless it is not possible to comply with the wishes; the sub-
stitute decision-maker is required only to take the patient’s prior capable wishes
into consideration. The substitute decision-maker’s final decision, however, may
or may not be consistent with the patient’s prior capable wishes.109
2) Reviewing a Decision of the Substitute Decision-maker
In the case of an incapable patient, where a health information custodian is of
the view that a substitute decision-maker is not complying with the obligation
to consider the factors discussed above,110 the custodian may apply to the Con-
107 PHIPA, ss. 24(1)(b), (c), & (d). These factors were not part of the first reading version
of Bill 31 (below note 111). Such factors could have been developed in regulations but,
ultimately, these factors were essentially copied into PHIPA from Bill 159, cl. 61. The
regulation-making power (as set out in Bill 31, first reading, 17 December 2003, at
PHIPA, cl. 71(1)(k)) would have governed “the giving, withholding or withdrawing of a
consent by a substitute decision-maker.” The approach in PHIPA adopts Recommen-
dation 13 of the Canadian Mental Health Association, Ontario Division, as submitted
to the Standing Committee on General Government, 26 January 2004 and available
online:
4550>.
108 The HCCA, above note 4, s. 21 provides that the substitute decision-maker must abide
by the wishes of the incapable individual made when capable and if known to the sub-
stitute decision-maker, or if these are not known, or if it is impossible to comply with
the wish, the best interests of the incapable patient as set out in that Act.
109 HCCA, ibid., s. 21. Note that in the “Consent and Capacity Fact Sheets about a substitute
decision-maker’s role under the Health Care Consent Act, 1996,” published by the Consent
and Capacity Board with respect to an application to review a substitute decision-maker’s
decision, the “Board may only grant permission to depart from prior capable wishes if it
is satisfied that the likely result of the proposed action is significantly better than would
have been anticipated in comparable circumstances at the time the wish was expressed:”
The Board’s fact sheets are available online: .
110 As set out in PHIPA, s. 24(1), outlined in Section E(1), above.
Guide to the Ontario Personal Health Information Protection Act
250
sent and Capacity Board111 for a determination of whether or not the substitute
decision-maker has complied. The parties to such an application are the health
information custodian, the incapable patient, the substitute decision-maker,
and any other person whom the Board specifies.112
Where the Board determines that the substitute decision-maker did not
comply with the requirements set out in PHIPA, the Board may substitute its
opinion for that of the substitute decision-maker.113 The Board may give the
substitute decision-maker directions as to how to comply with the Act.114 The
Board must specify the time within which the substitute decision-maker must
comply with its direction.115 If the substitute decision-maker does not comply
with the Board’s direction within the time required, then the substitute deci-
sion-maker is no longer authorized to act for the patient.116 Where the substi-
tute decision-maker is the Public Guardian and Trustee, he or she must comply
with the Board’s direction.117
In such an application by a health information custodian to the Board, the
patient is deemed to have applied for a review of his or her capacity to make
the relevant decision, unless there has been such a review within the previous
six months.118
As for all applications to the Board under PHIPA, the composition of the
panels to hear an application, the timelines for hearings, the patient’s right to
counsel, and appeal rights follow the requirements set out in the Health Care
Consent Act, 1996.119
111 PHIPA, s. 24(2). See note 55. After the first reading, the Standing Committee on Gen-
eral Government amended Bill 31, An Act to enact and amend various Acts with respect
to the protection of health information, 1st Sess., 38th Leg., Ontario, 2003, Sch. A [Bill
31] to include this type of application to the Board, apparently on the recommendation
of the Canadian Mental Health Association, Ontario Division (Recommendation 15);
see ibid.
112 PHIPA, s. 24(3). Application to the Board is to be made on Form P-2 available by con-
tacting the Board, online: ; or by phone 1-800-461-2036. Note
that the form specifies that only the health information custodian or the agent author-
ized to make the application can bring the application.
113 PHIPA, s. 24(4).
114 Ibid., s. 24(5).
115 Ibid., s. 24(6).
116 Ibid., s. 24(7). The Board has the power to deem the substitute decision-maker as not
meeting the requirements of s. 26(2). See text cited by note 70 about the require-
ments of this section of PHIPA.
117 PHIPA, s. 24(8).
118 PHIPA Regulation, above note 25, s. 9.
119 PHIPA, s. 24(9). For ss. 73–81 of the HCCA, see Section H below.
Substitute Decision-Making 251
3) Immunities, Offences, and Other Matters with Respect to
Substitute Decision-makers
a) Immunities
A substitute decision-maker who, on behalf of a patient, gives or refuses120 con-
sent to a collection, use, or disclosure of personal health information about the
patient; makes a request; gives an instruction; or takes a step is not liable for
damages if he or she acts reasonably in the circumstances, in good faith, and
in accordance with PHIPA.121
b) Offences
In connection with a health information custodian’s collection, use, or disclo-
sure of personal health information or in connection with an access to a record
of personal health information, it is an offence for the substitute decision-
maker to make any of the following assertions, knowing that the assertion is
untrue:
• that the substitute decision-maker is entitled to consent to the collection,
use, or disclosure of personal health information about the patient;122
• that the substitute decision-maker is at least sixteen years old or is the par-
ent of the patient;123
• that the substitute decision-maker is not prohibited by a court order or sep-
aration agreement from having access to the patient;124
• that the substitute decision-maker believes that no other person described
in an earlier paragraph or the same paragraph within the list of ranked per-
sons allowed to make decisions on behalf of an incapable patient exists;125 or
• that although such other person exists, the substitute decision-maker (who
is present or has otherwise been contacted) believes the other person would
not object to the substitute decision-maker making the decision.126
These offence provisions in PHIPA are specific to substitute decision-
makers. Of course, there are other offence provisions, of a more general
120 The concept of “refusing” consent includes “withholding or withdrawing” consent,
which are words more typically used in PHIPA to describe actions or inactions with
respect to consent. See, for example, ss. 18(5)(b), 19(1), 20(2), and 21(1)(b).
121 PHIPA, s. 71(3).
122 Ibid., s. 72(1)(c)(i).
123 Ibid., s. 72(1)(c)(ii), referring to s. 26(2)(b).
124 Ibid., s. 72(1)(c)(ii), referring to s. 26(2)(c).
125 Ibid., s. 72(1)(c)(iii), referring to s. 26(5)(a).
126 Ibid., s. 72(1)(c)(iii), referring to s. 26(5)(b).
Guide to the Ontario Personal Health Information Protection Act
252
nature, that could also be relevant to an action taken by a substitute decision-
maker with respect to a patient’s personal health information. Where a substi-
tute decision-maker, for example, falsely asserts that a record is incorrect, such
as in order to de-fraud an insurer, this constitutes an offence under PHIPA.127
c) Other Matters
The regulation under PHIPA clarifies that the substitute decision-maker is not
prevented from collecting, using, or disclosing the patient’s health number,128
and that the PHIPA restriction on recipients does not apply to personal health
information the substitute decision-maker receives, in his or her capacity as
substitute decision-maker, from the custodian about the patient.129
F. CAPACITY WITH RESPECT TO PERSONAL HEALTH
INFORMATION
1) A Patient Is Presumed Capable
PHIPA provides that a patient is presumed to be capable of consenting to the
collection, use, or disclosure of personal health information.130 A health infor-
mation custodian may rely on this presumption, unless the custodian has rea-
sonable grounds to believe that the patient is incapable.131 A custodian is not
required to question whether a patient is capable of giving consent each time
the custodian obtains the patient’s consent to the collection, use, or disclosure
127 PHIPA, s. 72(1)(b). For a discussion of offences in PHIPA, see Chapter 15.
128 PHIPA Regulation, above note 25, s. 1(1). See further Chapter 2, Section D(4).
129 PHIPA Regulation, ibid., s. 21(a). See further Chapter 12, Section D(1)(b).
130 PHIPA, s. 21(4). This provision allows the custodian simply to begin collecting infor-
mation from the individual. However, once the custodian realizes that the individual
may not be capable, the custodian then must take steps to decide capacity, where con-
sent would be required with respect to the decision.
131 PHIPA, s. 21(5). It should be noted that where a patient’s substitute decision-maker
asserts that he or she has authority to make the information decision on an incapable
patient’s behalf, which under s. 26(1) necessarily includes the assertion that the patient
has been determined by a health information custodian to be incapable, the health
information custodian is evidently entitled to rely on this assertion unless it would be
unreasonable to do so (PHIPA, s. 71(4)(b)). This suggests that where the custodian is
presented with a person claiming to be the substitute decision-maker for a patient who
has been determined by another custodian to be incapable, the custodian may rely on
this claim unless there is reason to doubt the veracity of the substitute decision-maker’s
claim. Thus the custodian to whom this claim is made does not need to independently
determine the patient’s capacity unless the claim appears unreliable.
Substitute Decision-Making 253
of personal health information. Further, this presumption in PHIPA permits a
health information custodian, who receives a request from the patient to dis-
close the patient’s personal health information to a third party, to presume that
the patient is capable in making this request, without having to personally con-
tact the patient to ascertain whether or not the patient is capable of authoriz-
ing the disclosure. This presumption assists the custodian in assuming the
validity of the patient’s consent.132
The custodian must, however, question the patient’s capacity where it
would be unreasonable to rely on this presumption, such as where the custo-
dian is aware that the patient is very ill and unable to make decisions because
of heavy reliance on medication or because the patient is suffering from
extreme pain.
It is a common error to assume that PHIPA provides sixteen years as the
“age of consent.” In some contexts PHIPA does refer to the age of sixteen. For
example, the Act provides that a patient must be at least sixteen years old to be
able to authorize someone else in writing to act on the patient’s behalf.133 How-
ever, there is no “age of consent” in the Act and the presumption that a patient
is capable applies to persons under the age of sixteen, as well.134 Of course, in
some cases, age can be indicative of incapacity.135
132 Under PHIPA, s. 20(2), the custodian who has obtained a patient’s consent to a col-
lection, use, or disclosure of the patient’s personal health information or has received
a document purporting to record the patient’s consent is entitled to assume that the
consent fulfils the requirements of PHIPA, unless it is not reasonable to assume so.
For a discussion of this assumption of validity, see Chapter 5, Section C.
133 PHIPA, s. 23(1)[1][ii].
134 This is consistent with the HCCA, above note 4, s. 10.
135 Professor D.N. Weisstub, in his Enquiry on Mental Competency: Final Report (Toronto:
Queen’s Printer of Ontario, 1990) at 116 [Weisstub Report] conducted research indicat-
ing that “children attain their adult reasoning capacities somewhere between eleven or
twelve and fourteen.” His report ultimately, at 152, recommended that “young persons
age 14 or above be treated as adults with respect to their decisional prerogatives, and
accordingly be assessed as adults where their capacity is in question.” In reviewing the
case law pertaining to mental competency as existed at the time of his enquiry, Prof.
Weisstub concluded, at 132, that “it would be playing legal games to pretend that the
court would apply the same presumption to a child of three as to an adult. While the
legal doctrine may remain unchanged, the reality is that the presumption of compe-
tence is likely to be accorded more weight in proportion to the child’s age.” More
recently, a child’s capacity to make treatment decisions has been discussed in two
related cases: Children’s Aid Society of Metropolitan Toronto v. H(T) (1995), RE1/95, 15
July 1996 (Ont. Gen. Div.) and H(T) v. Children’s Aid Society of Metropolitan Toronto
(1996), O.J. No. 2578 (Gen. Div.). TH, a thirteen-year-old Jehovah’s Witness, refused to
give consent to treatment using blood products to treat her aplastic anemia. TH’s
mother had also refused consent. The Children’s Aid Society applied to court for an
Guide to the Ontario Personal Health Information Protection Act
254
Another common mistaken assumption is that a patient is incapable of
making a decision about his or her personal health information if he or she suf-
fers from mental illness. The fact that a patient is mentally ill does not mean
that he or she is incapable; such a patient may still be capable of making a deci-
sion concerning his or her personal health information.136 Also, the inability of
a patient to communicate, such as because of a language barrier or speech
impairment, does not make the patient incapable. Further, the fact that a
patient disagrees with the custodian’s judgment regarding the proper decision
that the patient should be making regarding a collection, use, or disclosure of
personal health information does not make the patient incapable. As empha-
sized by Mr. Justice Quinn in Re Koch: “The right knowingly to be foolish is not
unimportant; the right to voluntarily assume risks is to be respected.”137
PHIPA recognizes that a patient may be capable of consenting to the col-
lection, use, or disclosure of some parts of the information, but incapable with
respect to other parts.138 For example, a patient may be capable of consenting
to the disclosure of personal health information that consists of the patient’s
name and the fact that the patient has been admitted to a hospital as a patient.
However, the patient may not be capable of consenting to the disclosure of the
patient’s entire health history. Moreover, a patient may be capable at one time,
but incapable at another, and vice versa.139
order declaring that TH was in need of protection (under the provisions of the Child
and Family Services Act). Counsel for the patient argued that TH was a mature minor
capable of making her own treatment decisions. The court in the 1995 case concluded
that there is a presumption of incapacity of a child less than sixteen years. Although
this conclusion was rejected in the 1996 case, the case does underline that age is a fac-
tor that can be considered when a person’s capacity is being determined.
136 The Weisstub Report, ibid. at 116, noted the historical failure to respect this presump-
tion of capacity: “The tendency to conflate mental illness with lack of capacity, which
occurs to an even greater extent when involuntary commitment [to a psychiatric facili-
ty] is involved, has deep historical roots, and even though changes have occurred in
the law over the past twenty years, attitudes and beliefs have been slow to change. For
this reason it is particularly important that autonomy and self determination be given
priority when assessing individuals in this group.”
137 (1997), 33 O.R. (3d) 485 at 521 (Gen. Div.), quoted with approval by the Supreme Court
of Canada in Starson v. Swayze, [2003] 1 S.C.R. 722 at para. 76.
138 PHIPA, s. 21(2). This mirrors the provisions for capacity for treatment in the HCCA,
above note 4, s. 15(1).
139 PHIPA, s. 21(4). A similar provision with respect to capacity for treatment is found in
the HCCA, ibid., s. 15(2). Also note that in Form P-1, Application to the Consent and
Capacity Board for a Review of a Determination of Incapacity, the patient may be inca-
pable of one of the following: a collection, use, or disclosure decision. The application
to the Board is discussed in Section F(6), below.
Substitute Decision-Making 255
2) The Definition of Capacity
For the purposes of PHIPA, in the context of consenting to a collection, use, or
disclosure of personal health information, the capable patient must have both
• the ability to understand the information that is relevant to deciding whether
to consent to the collection, use, or disclosure, as the case may be; and
• the ability to appreciate the reasonably foreseeable consequences of giving,
not giving, withholding, or withdrawing the consent.140
If the patient has only the ability to understand, but cannot appreciate the con-
sequences of a consent decision, the patient would be determined to be inca-
pable of making a decision about his or her personal health information.
3) Who Determines Capacity?
Under PHIPA, the discretion to determine capacity rests with the health infor-
mation custodian. In the case of a hospital, for example, the health information
custodian that holds this discretion is the person who operates the hospital (i.e.
the hospital corporation), as opposed to the attending physician.141 This
approach differs from the approach taken in the Health Care Consent Act, 1996
where the opinion as to whether a patient is capable with respect to a treatment
decision rests with the health care practitioner who proposes the treatment.142
Where a custodian is not a natural person, the custodian must rely on its agents,
such as physicians, psychologists, nurses, or social workers on staff with or
140 PHIPA, s. 21(1). This two-step approach to a determination of capacity has its statutory
genesis in Ontario in the Mental Health Act, above note 54, which defined “mentally
competent” as having “the ability to understand the subject-matter in respect of which
consent is requested and [being] able to appreciate the consequences of giving or with-
holding consent: MHA, s. 1(1), repealed by PHIPA, s. 90(1). The provisions in the Men-
tal Health Act that addressed findings of mental incompetence with respect to records
and review rights have been repealed with the coming into force of PHIPA [PHIPA,
s. 90(12), repealing ss. 36(14) & (15) of the MHA.] This two-step approach has been
incorporated into the HCCA, above note 4. Under that Act, at s. 4(1), a person is capa-
ble to make a decision about a treatment, an admission to a care facility, or a personal
assistance service within that facility, as the case may be, if the person (1) is able to
understand the information that is relevant to making a decision about the treatment,
admission, or personal assistance service, as the case may be; and (2) is able to appreci-
ate the reasonably foreseeable consequences of a decision or lack of decision. A similar
two-step analysis figures in the Substitute Decisions Act, 1992, above note 18 (such as at
s. 47(1) pertaining to a person’s capacity to give a power of attorney for personal care).
141 See discussion of “custodian” in Chapter 2, Section B(1).
142 HCCA, above note 4, s. 10(1).
Guide to the Ontario Personal Health Information Protection Act
256
employed by the custodian to determine the capacity of a patient and to provide
a determination about the patient’s capacity.143 Even where the custodian is a
natural person, the custodian’s agents may be better suited to make the deter-
mination, and the custodian may delegate this task to some of them.144
The custodian may also disclose personal health information to another
person, without the patient’s consent, where information is needed to help
determine the patient’s capacity.145Where a custodian requires a second opinion
about the patient’s capacity, for example, or where the custodian does not have
the expertise to embark on such a determination, the custodian may rely on this
provision to obtain the necessary assistance. The custodian may determine inca-
pacity by relying on a letter from the patient’s family physician, for example; or
the custodian may request that the patient be referred to a psychologist or psy-
chiatrist for a more formal evaluation. In this section of PHIPA, the words “the
custodian may disclose” refer not only to the custodian who requires a determi-
nation as to whether or not a patient is capable, but also to the custodian who
was asked for an opinion to confirm the capacity of the patient. In this latter sit-
uation, the health information custodian who has been consulted would be dis-
closing the details of the determination back to the requesting custodian.146
4) Determining Capacity with Respect to Personal Health
Information
Whether or not a patient is capable of consenting to the collection, use, or dis-
closure of his or her personal health information is a conclusion that a custo-
dian must reach based on the legal definition as set out in PHIPA. “Capacity,”
in the context of PHIPA, is not a clinical condition or a diagnosis. A health
information custodian would not conclude that the patient is incapable as a
result of conducting a particular clinical test on the patient, such as a Mini
Mental Status Examination.147
143 Note that the application forms of the Consent and Capacity Board pertaining to
PHIPA supports this view. The forms refer to the custodian or the agent who made
the determination: see, for example, Form P-2, online: .
144 For example, in a provincially operated psychiatric facility, the “officer in charge” is the
custodian. Physicians and others who provide health care to the patients would logi-
cally continue to assess the capacity of patients.
145 PHIPA, s. 43(1)(a).
146 Ibid.
147 Physicians and psychologists often use a Mini Mental Status Examination, which is a
commonly used simple screening test for dementia. See, online:
mrkshared/mmanual/figures/165fig1.jsp>.
Substitute Decision-Making 257
Rather, a health information custodian must determine a patient’s capaci-
ty, where necessary, by applying the legal test as set out in PHIPA to a patient’s
particular situation. The custodian must determine whether or not the patient
has the ability to understand the information relevant to the decision and the
ability to appreciate the consequences of the decision.148
The principles, extracted from decisions of the Consent and Capacity
Board149 and the Supreme Court of Canada in Starson v. Swayze,150 may guide
the health information custodian in this determination.
a) Ability to Understand the Information Relevant to the Consent
A health information custodian151 should provide a patient with the relevant
information, such as the purpose for which the custodian will collect, use, or
disclose the personal health information and the identity of any persons to
whom the custodian will disclose the information. By asking a patient to
explain back to the custodian the information that was provided, the custodian
can determine the extent to which the patient can retain, interpret, and manip-
ulate that information.152 This exercise can help reveal whether the patient
demonstrates an ability to understand the information being discussed.153
148 PHIPA, s. 21(1).
149 The Consent and Capacity Board has rendered some decisions pertaining to patients’
mental incompetence to consent to the disclosure of clinical records under the provi-
sions of the Mental Health Act, now repealed. See above note 140. Decisions of the
Consent and Capacity Board are available online at: .
150 Above note 137. While there are no court decisions pertaining to capacity to make deci-
sions concerning personal health information, there are a number of decisions that
review the test for capacity to consent to treatment under the HCCA, above note 4.. In
Starson v. Swayze, the leading case, Starson, a man with superior skills in physics, had
been admitted to a psychiatric facility, on the order of the Ontario Review Board, after he
was found not criminally responsible for making death threats. The Ontario Review
Board ordered his detention for twelve months. Starson had been diagnosed for some
years with a bipolar disorder. His attending physician proposed to treat him with various
medications, to which Starson refused to give his consent. The attending physician found
Starson incapable of deciding whether to reject or accept the proposed medical treatment.
Starson applied to the Consent and Capacity Board for a review of the finding of incapaci-
ty. The Supreme Court of Canada overturned the Board’s confirmation of his incapacity.
151 As set out above, the “health information custodian” may not make the determination, per
se: an agent of the custodian could make the determination on the custodian’s behalf.
152 According to the Supreme Court of Canada in Starson v. Swayze, above note 137 at
para. 79, in the context of capacity to consent to treatment under the Health Care Con-
sent Act, 1996, a patient must be able to understand the information about the pro-
posed treatment relevant to making the decision. This requires the cognitive ability to
process, retain, and understand the relevant information.
153 In Re R.G. J.K.L. 2003 CanLII 26073 (ON C.C.B.), 14 February 2003, the Consent and
Capacity Board found that, although the patient knew what the record was and the
Guide to the Ontario Personal Health Information Protection Act
258
b) Ability to Appreciate the Reasonably Foreseeable Consequences of a
Decision about the Consent
Further, a health information custodian must determine whether a patient can
apply the relevant information discussed about the consent to the collection,
use, or disclosure of personal health information, as the case may be, to his or
her own situation. Can the patient weigh the foreseeable consequences of the
decision?154 Does the patient realize the consequences of the choice he or she
is making? Can the patient explain the basis for the decision?155 However,
whether a patient can appreciate the consequences can only be assessed prop-
erly where the custodian has adequately informed the patient of the decision’s
consequences.156 If the custodian does not provide the relevant information to
fact that a privacy issue was involved, she did not have the mental competency to
understand key pieces of relevant information. In this case, the patient was unable to
understand that she suffered from a mental illness requiring ongoing treatment, and
that a plan needed to be put in place for that treatment to occur outside the hospital
before she could be safely discharged. Also, she was unable to understand the fact
that those charged with devising such a plan needed access to her medical record for
that purpose; available online: .
154 In Starson v. Swayze, above note 137 at para. 78, the Supreme Court of Canada con-
cluded that, in the context of treatment decisions, in addition to being able to under-
stand the information relevant to the decision, the person must be able to appreciate
the reasonably foreseeable consequences of the decision or lack of one. This requires
the patient to be able to apply the relevant information to his or her own circum-
stances, and to be able to weigh the foreseeable risks and benefits of a decision or lack
thereof.
155 In Re R.S. 2004 CanLII 20313 (ON C.C.B.), 1 April 2004, the patient refused to sign a
consent form permitting the release of information about the patient in possession of
other psychiatric facilities, the Windsor Police Department, and the Windsor Proba-
tion Office to the attending physician at the London Regional Mental Health Centre.
The patient felt that the information would be used against him and result in his stay
in the hospital being longer. The Consent and Capacity Board concluded that this was
a reasonable conclusion. The Board concluded that the patient had the ability to
appreciate the consequences of giving or refusing consent, namely that without con-
sent his physician would be unable to get information from various agencies and with
consent the physician would be able to access the information; available online:
156 For instance, a lack of appreciation may reflect the attending physician’s failure to
adequately inform the patient of the decision’s consequences. In the case of Professor
Starson, not taking medication would lead to consequences to him with respect to
future dispositions by the Ontario Review Board. But it appeared that neither of the
psychiatrists who testified before the Consent and Capacity Board had discussed such
possible consequences with their patient. (The Consent and Capacity Board specu-
lated that taking medication would improve the patient’s prospects before the Ontario
Review Board: above note 137 at para. 101.) The Court in Starson v. Swayzedoes not
explain the situation further. The Ontario Review Board has jurisdiction under the
Substitute Decision-Making 259
the patient, the patient may not appreciate the consequences of his or her deci-
sion, not because of a lack of capacity but because of a lack of information. A
custodian may also consider whether the decision-making is consistent with
the patient’s lifestyle choices and beliefs.157 If so, this may suggest that the
patient is able to make the decision, even though the decision may be incon-
sistent with lifestyle choices and beliefs of most people.
5) Information about a Determination of Incapacity
Where a health information custodian158 makes a determination that a patient is
incapable, the custodian is required to provide information to the incapable
patient about the consequences of the determination.159 With a determination of
incapacity, the right to make some or all decisions about his or her own infor-
mation is effectively taken away from the patient and is given to someone else.
It is, therefore, important for the custodian to provide information to the indi-
vidual so that the patient knows he or she has an opportunity to challenge the
determination, either informally with the custodian or formally by way of an
application to the Consent and Capacity Board.160 The custodian is not obliged to
provide such information if it is not reasonable to do so in the circumstances.161 It
provisions of the Criminal Code of Canada, R.S.C. 1985, c. C-46 to detain patients in
psychiatric facilities as well as discharge patients. This suggests that had Professor
Starson been taking medication, the Review Board would possibly have allowed him
to reside in a different environment. In the Court’s view, a finding of incapacity is jus-
tified only if the reasons for the patient’s failure to appreciate the consequences
“demonstrate that the patient’s mental disorder prevents him from having the ability
to appreciate the foreseeable consequences of the decision,” that is, not because of
lack of information. See Starson v. Swayze, above note 137 at para. 81.
157 The Supreme Court of Canada in Starson v. Swayze emphasized that the best interests
of the patient are irrelevant to a determination of whether or not a patient is capable
of making a treatment decision. “The [Consent and Capacity] Board’s sole task was to
determine the patient’s mental capacity,” asserted Mr. Justice Major for the Court. “If
Professor Starson is capable, he is fully entitled to make a decision that the Board, or
other reasonable persons may perceive as foolish. The Board improperly allowed its
own conception of Professor Starson’s best interest to influence its finding of incapac-
ity.” Ibid. at para. 81.
158 That is, on its own or through its agents.
159 PHIPA, s. 22(2). The subsection indicates that the custodian is also obliged to provide
any information that is prescribed. No such regulation exists at the time of writing. A
similar requirement to provide information to an incapable patient exists in the
HCCA, above note 4, s. 17.
160 See the next section.
161 PHIPA, s. 22(2).
Guide to the Ontario Personal Health Information Protection Act
260
would not be reasonable, for example, to provide such advice to a young child,162
to a person who is in a coma, or where there is an emergency.163
As PHIPA does not specify what information a custodian must provide to
a patient to fulfil the custodian’s obligation to provide the patient with informa-
tion about the consequences of the determination, a health information custo-
dian has the ability to exercise significant discretion in this regard. The
information may include advice to the patient that he or she has a right to a
review of the finding before the Consent and Capacity Board, and information
about how to make an application to the Board. It would be reasonable for the
custodian to notify the patient that someone else will be making the decision
about the collection, use, or disclosure of the patient’s personal health informa-
tion on his or her behalf.
However, in one instance, other legislation does specify what steps must
be taken once a patient is determined to be incapable of consenting to the col-
lection, use, or disclosure of personal health information. Under the Mental
Health Act, an officer in charge of a psychiatric facility164 is required to notify a
“rights advisor” when a patient is determined incapable of consenting to a col-
lection, use, or disclosure of personal health information. The rights advisor,
in turn, is required to provide an explanation to the patient about the conse-
quences of such determinations of incapacity.165 Rights advice is not required
in all situations.166
162 General, R.R.O. 1990, Reg. 741, s. 15.1(1) [Reg. 741], made under the MHA, above note
54, sets out that rights advice (that is, an explanation about the consequences of a
finding of incapacity under PHIPA) is not required to be provided to a child under
fourteen years of age. Providing rights advice to patients fourteen years and older, but
not to younger patients, is consistent with the Weisstub Report’s conclusion that chil-
dren fourteen and over should be treated as adults for the purposes of capacity assess-
ments. See above note 135. It would appear to be reasonable for the custodian to adopt
a similar approach with respect to providing an explanation to patients under fourteen
years of age, in general, about the consequence of a determination of incapacity in
PHIPA.
163 For example, ss. 15.1(1) and (5) of Reg. 741, ibid., provides that there is no requirement
for rights advice for a patient under fourteen, where the patient is in a coma, is
unconscious, is semi-conscious or is unable to communicate comprehensibly despite
reasonable efforts to understand the person, or where there is an emergency.
164 An officer in charge of a psychiatric facility may be either an agent of a health infor-
mation custodian (see PHIPA, s. 3(1)[4][i]) or a health information custodian in the
case of the three government-operated psychiatric facilities (see PHIPA, s. 3(2)).
165 Reg. 741, above note 162, s. 15.1. Information about rights advice in psychiatric facili-
ties can be found online: .on.ca/ser-rig.html>.
166 See above note 163.
Substitute Decision-Making 261
As most RHPA Colleges and the College of Social Work and Social Service
Workers have already established guidelines for their members as to what kind
of information their members should provide to a patient found incapable of
making a decision under the Health Care Consent Act, 1996, they may, in time,
build on these guidelines to make them useful for determinations of incapac-
ity under PHIPA as well.167 A health information custodian that is a facility
may also develop its own guidelines.
6) Application to the Consent and Capacity Board
Where the health information custodian has determined that a patient is inca-
pable of making a decision about his or her personal health information, that
patient has a right to apply to the Consent and Capacity Board for a review of
that determination.168 This right, however, does not extend to a patient who
already has a substitute decision-maker under the Health Care Consent Act,
1996 where a decision about the collection, use, or disclosure of personal
167 For example, the Ontario College of Social Workers and Social Service Workers has
published a standard of practice for social workers communicating a finding of inca-
pacity with respect to admission to care facilities or personal assistance services. The
standard sets out what the social worker should do:
• Inform the client that a substitute decision-maker will be asked to assist the
client and to make final decisions on his or her behalf.
• Advise the client of his or her options if the client disagrees with the need for
a substitute decision-maker or disagrees with the involvement of the present
substitute. The member will assist the client if he or she expresses the wish to
exercise the options. These options include applying to the Consent and
Capacity Board for a review of the finding of incapacity and/or finding another
substitute of the same or more senior rank.
• Help the incapable client participate as far as possible with the substitute deci-
sion-maker in planning for himself or herself.
[Standards of Practice Handbook, 1st ed. (Toronto: Ontario College of Social Workers
and Social Service Workers, 2000) at 31, s. 1.01, online: .ocswssw.org>.
The Royal College of Dental Surgeons of Ontario provides similar guidelines to its
members with respect to communicating with a patient incapable of providing con-
sent to treatment, published August 2002, online: /guidelines/
provide_consent.pdf>. See also the College of Occupational Therapists of Ontario:
Guide to the Health Care Consent and Substitute Decisions Legislation for Occupational
Therapists, Practice Guidelines for Providing Information for Those Incapable (September
1996), available online: .
168 PHIPA, s. 22(1). The application to the Board is Form P-1, available on the Board’s
website: .
Guide to the Ontario Personal Health Information Protection Act
262
health information on behalf of the patient is necessary for, or ancillary to, a
decision that the substitute decision-maker is authorized to make under that
Act.169 In this situation, the patient who has been found incapable of a treat-
ment decision (for example, under the Health Care Consent Act, 1996) has
already had an opportunity to have the finding reviewed under that Act.170 As
the information decision to be made under PHIPA is merely “necessary and
ancillary”171 to the treatment decision, PHIPA does not provide a patient with,
in essence, a right to a second review of the finding of incapacity.
The parties to an application before the Board are the patient applying for
the review of the determination; the health information custodian that has cus-
tody or control of the information; and all other persons whom the Board spec-
ifies.172 Where an agent has made the determination that the patient is
incapable, on the custodian’s behalf, the Board may include the agent as a
party.173 The Board may confirm the determination of incapacity or it may
determine that the patient is, in fact, capable.174 If the Board confirms a deter-
mination that a patient is incapable, the patient is restricted from re-applying
to the Board earlier than six months from the final disposition of the applica-
tion,175 unless there has been a material change in circumstances.176
For applications to the Board under PHIPA, the composition of the panels
to hear applications, the timelines for hearings, the patient’s right to counsel,
and appeal rights are determined in accordance with the Health Care Consent
Act, 1996.177
Where a patient makes an application to the Consent and Capacity Board
for a review of a health information custodian’s determination of incapacity,
the custodian can rely on the determination of incapacity until such time as the
169 PHIPA, s. 22(3). See the discussion about information decisions necessary or ancillary
to the decisions a substitute decision-maker is authorized to make under the HCCA,
above note 4 and at Section B(6)(a) above.
170 HCCA, ibid., s. 32.
171 See the discussion of “necessary and ancillary” in Section B(6)(a) above.
172 PHIPA, s. 22(4).
173 Consent and Capacity Board, Form P-1.
174 PHIPA, s. 22(5).
175 A “final disposition” would include any appeals of the Board’s decision.
176 PHIPA, ss. 22(6) & (7). A similar right exists in the HCCA, above note 4, s. 32(6).
Where a material change in circumstances has occurred, the Board will accept written
submissions to request a new hearing. A material change in circumstances would be
a situation, for example, where a patient is now taking medication and the treatment
has reduced the effects of delusionary behaviour.
177 PHIPA, s. 22(8). Sections 73–81 under the HCCA, ibid., apply.
Substitute Decision-Making 263
Board may overturn it, and apparently may proceed to act pursuant to a substi-
tute decision-maker’s consent.178
G. TIPS FOR FINDING A SUBSTITUTE DECISION-MAKER FOR
AN INCAPABLE PATIENT FROM THE LIST
• Go down the list from top to bottom.
• Check each category of persons described in the list.
• Stop at the first person you find on the list.
• Find out if there are any other persons in the same category.
• If there is more than one person in the category, see if the person you have
contacted may speak for all.
• Ask for proof that the person is who the person says he or she is. Document
their assertion and have them record or confirm the claim in writing.
• Ask yourself: is there any reason to doubt this potential substitute decision-
maker is capable?
• Ask the potential substitute decision-maker:
– Are you sixteen or older?
– If you are under sixteen, are you the parent of the child for whom you
are consenting?
– Is there a court order or separation agreement that tells you to stay away
from the patient or does not allow you to make decisions for the patient?
– Is there no other person described in an earlier paragraph of the list or
in the same paragraph in the list?
• And,
– Even if such other person does exist, would they object to you making
the decision? (Remember: if the other person is a guardian or an attor-
178 Although PHIPA does not speak to this issue specifically, one can come to this con-
clusion due to the absence in PHIPA of a specific provision that requires a delay until
such time as the Board deals with a capacity determination. Contrast this approach
with that taken in the Health Care Consent Act, 1996. In section 18 of that Act, for
example, where a health care practitioner proposes treatment and finds that the
patient is incapable with respect to it, treatment must not begin in circumstances
where the practitioner knows an application to the Board to review the finding has
been made or is about to be made . Timelines for delay are specifically set out in sec-
tion 18. These timelines recognize that in some instances a patient will indicate that
an application will be made but, in fact, none is made: once a timeline has passed, the
practitioner should be able to clearly rely on a consent of the authorized substitute in
proceeding with the treatment.
Guide to the Ontario Personal Health Information Protection Act
264
Toronto
Phone: (416) 924-4961
Fax: (416) 924-8873
Kingston
Phone: (613) 530-1081
Fax: (613) 530-2653
London
Phone: (519) 438-7811
Fax: (519) 660-1525
North Bay
Phone: (705) 494-8450
Fax: (705) 474-5630
Ottawa
Phone: (613) 565-6368
Fax: (613) 565-9605
Penetanguishene
Phone: (705) 733-3959
Fax: (705) 733-8268
Sudbury
Phone: (705) 673-4614
Fax: (705) 673-7293
Thunder Bay
Phone: (807) 625-0264
Fax: (807) 625-0265
Hamilton/Guelph
Phone: (905) 308-9612
Fax: (905) 522-4357
ney under a power of attorney for property or personal care, then you,
the custodian, must make an effort to locate them.)
H. CONTACTS
Public Guardian and Trustee
www.attorneygeneral.jus.gov.on.ca
Toll free: 1-800-366-0335
Fax: (416) 314-2642
Psychiatric Patient Advocate Office
www.ppao.gov.on.ca
Toll free: 1-866-851-1212
Fax request for a rights advice visit: 1-866-822-2333
Consent and Capacity Board
www.ccboard.ca
Toll free: 1-800-461-2036
Fax completed forms to: (416) 924-8873
Consent and Capacity Board — Regional Offices
Substitute Decision-Making 265
I. EXCERPT FROM THE HEALTH CARE CONSENT ACT, 1996
PERTAINING TO APPLICATIONS TO THE CONSENT AND
CAPACITY BOARD
These sections apply, with necessary modifications, to applications to the
Board under PHIPA. See PHIPA, section 21(8) (application for a review of a
determination of incapacity); section 27(9) (application to appoint a represen-
tative); section 24(9) (application to determine compliance by a substitute deci-
sion-maker).
Assignment of Board members to deal with applications
73. (1) The chair shall assign the members of the Board to sit alone or in
panels of three or five members to deal with particular applications.
Qualifications of member sitting alone
(2) A member of the Board may be assigned to sit alone to deal with an
application only if,
(a) throughout the two-year period immediately preceding the assignment,
he or she has been a member of the Board or of the review board estab-
lished by section 37 of the Mental Health Act, as it read before the day sub-
section 20(23) of the Consent and Capacity Statute Law Amendment Act,
1992 came into force;
(b) he or she is a member of the Law Society of Upper Canada and has been
a member of the Law Society of Upper Canada throughout the ten-year
period immediately preceding the assignment;
(c) in the case of an application for a review of a finding of incapacity, he or
she has experience that, in the opinion of the chair, is relevant to adjudi-
cating capacity; and
(d) he or she meets all of the other qualifications specified by the chair under
subsection 71(3).
Panel proceedings
(3) If a panel is assigned to deal with an application,
(a) the chair shall designate one member of the panel to preside over the
hearing to be conducted by the panel in relation to the application; and
(b) a majority of the members of the panel constitutes a quorum.
Decision of Board
(4) If a member of the Board is assigned to sit alone to deal with an appli-
cation, the decision of the member is the decision of the Board, and if a panel
Guide to the Ontario Personal Health Information Protection Act
266
is assigned to deal with an application, the decision of a majority of the mem-
bers of the panel is the decision of the Board.
Disqualification
74. (1) A member of the Board shall not take part in the hearing of a mat-
ter that concerns a person who is or was the member’s patient or client.
Same
(2) A member of the Board who is an officer or employee of a hospital or
other facility or has a direct financial interest in such a facility shall not take
part in the hearing of a matter that concerns a person who is a patient of the
facility or who resides in the facility.
Application hearings
Board to fix time and place of hearing
75. (1) When the Board receives an application, it shall promptly fix a time
and place for a hearing.
Hearing to begin within seven days
(2) The hearing shall begin within seven days after the day the Board
receives the application, unless the parties agree to a postponement.
Decision
(3) The Board shall render its decision and provide each party or the
party’s counsel or agent with a copy of the decision within one day after the
day the hearing ends.
Reasons
(4) If, within 30 days after the day the hearing ends, the Board receives a
request from any of the parties for reasons for its decision, the Board shall,
within two business days after the day the request is received, issue written
reasons for its decision and provide each party or the party’s counsel or agent
with a copy of the reasons.
Notice of right to request reasons
(5) The Board shall advise all parties to the application that each party has
a right to request reasons for the Board’s decision.
Method of sending decision and reasons
(6) Despite subsection 18(1) of the Statutory Powers Procedure Act, the
Board shall send the copy of the decision and, if reasons are required to be
issued under subsection (4), the copy of the reasons,
Substitute Decision-Making 267
(a) by electronic transmission;
(b) by telephone transmission of a facsimile; or
(c) by some other method that allows proof of receipt, in accordance with the
tribunal’s rules made under section 25.1 of the Statutory Powers Procedure
Act.
Deemed day of receipt
(7) Despite subsection 18(3) of the Statutory Powers Procedure Act, if the
copy is sent by electronic transmission or by telephone transmission of a fac-
simile, it shall be deemed to be received on the day that it was sent, unless that
day is a holiday, in which case the copy shall be deemed to be received on the
next day that is not a holiday.
Exception
(8) If a party that acts in good faith does not, through absence, accident,
illness or other cause beyond the party’s control, receive the copy until a date
that is later than the deemed day of receipt, the actual date of receipt governs.
Meaning of “business day”
(9) In subsection (4), “business day” means any day other than Saturday
or a holiday.
Examination of documents
76. (1) Before the hearing, the parties shall be given an opportunity to
examine and copy any documentary evidence that will be produced and any
report whose contents will be given in evidence.
Health record
(2) The party who is the subject of the treatment, the admission or the
personal assistance service, as the case may be, and his or her counsel or
agent are entitled to examine and to copy, at their own expense, any medical
or other health record prepared in respect of the party, subject to subsections
35(6) and (7) of the Mental Health Act (withholding record of personal health
information), subsections 33(2), (3) and (4) of the Long-Term Care Act, 1994
(withholding record of personal health information) and subsections 183(2) to
(6) of the Child and Family Services Act (withholding record of mental disor-
der).
Communication re subject-matter of hearing
77. (1) The member or members of the Board conducting a hearing shall
not communicate about the subject-matter of the hearing directly or indirect-
Guide to the Ontario Personal Health Information Protection Act
268
ly with any party, counsel, agent or other person, unless all the parties and
their counsel or agents receive notice and have an opportunity to participate.
Exception
(2) However, the member or members of the Board conducting the hear-
ing may seek advice from an adviser independent of the parties, and in that
case the nature of the advice shall be communicated to all the parties and their
counsel or agents so that they may make submissions as to the law.
Only members at hearing to participate in decision
78. No member of the Board shall participate in a decision unless he or
she was present throughout the hearing and heard the parties’ evidence and
argument.
Release of evidence
79. (1) Within a reasonable time after the final disposition of the proceed-
ing, documents and things put in evidence at the hearing shall, on request, be
released to the person who produced them.
Return of original record
(2) If an original clinical record respecting a person’s care or treatment
was put in evidence, it shall be returned to the place from which it was
obtained as soon as possible after the final disposition of the proceeding.
Appeal
80. (1) A party to a proceeding before the Board may appeal the Board’s
decision to the Superior Court of Justice on a question of law or fact or both.
Time for filing notice of appeal
(2) The appellant shall serve his or her notice of appeal on the other par-
ties and shall file it with the court, with proof of service, within seven days
after he or she receives the Board’s decision.
Notice to Board
(3) The appellant shall give a copy of the notice of appeal to the Board.
Record
(4) On receipt of the copy of the notice of appeal, the Board shall prompt-
ly serve the parties with the record of the proceeding before the Board, includ-
ing a transcript of the oral evidence given at the hearing, and shall promptly
file the record and transcript, with proof of service, with the court.
Substitute Decision-Making 269
Time for filing appellant’s factum
(5) Within 14 days after being served with the record and transcript, the
appellant shall serve his or her factum on the other parties and shall file it,
with proof of service, with the court.
Time for filing respondent’s factum
(6) Within 14 days after being served with the appellant’s factum, the
respondent shall serve his or her factum on the other parties and shall file it,
with proof of service, with the court.
Extension of time
(7) The court may extend the time for filing the notice of appeal, the
appellant’s factum or the respondent’s factum, even after the time has
expired.
Early date for appeal
(8) The court shall fix for the hearing of the appeal the earliest date that
is compatible with its just disposition.
Appeal on the record, exception
(9) The court shall hear the appeal on the record, including the tran-
script, but may receive new or additional evidence as it considers just.
Powers of court on appeal
(10) On the appeal, the court may,
(a) exercise all the powers of the Board;
(b) substitute its opinion for that of a health practitioner, an evaluator, a sub-
stitute decision-maker or the Board;
(c) refer the matter back to the Board, with directions, for rehearing in whole
or in part.
Counsel for incapable person
81. (1) If a person who is or may be incapable with respect to a treatment,
admission to a care facility or a personal assistance service is a party to a pro-
ceeding before the Board and does not have legal representation,
(a) the Board may direct the Public Guardian and Trustee or the Children’s
Lawyer to arrange for legal representation to be provided for the person;
and
(b) the person shall be deemed to have capacity to retain and instruct coun-
sel.
Guide to the Ontario Personal Health Information Protection Act
270
Responsibility for legal fees
(2) If legal representation is provided for a person in accordance with
clause (1) (a) and no certificate is issued under the Legal Aid Services Act, 1998
in connection with the proceeding, the person is responsible for the legal fees.
Child in secure treatment program
(3) If a child who has been admitted to a secure treatment program under
section 124 of the Child and Family Services Act is a party to a proceeding
before the Board, the Children’s Lawyer shall provide legal representation for
the child unless the Children’s Lawyer is satisfied that another person will
provide legal representation for the child.
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