1. Planning ahead:
Advance Care Planning
in Dementia Care
Dr. Doris Barwich, FH PMD End of Life Care
Pat Porterfield, VCH Regional lead for
Palliative Care
1
1

2. Disclosures
Dr. Doris Barwich
&
Pat Porterfield
No disclosures
2

3. Objectives
 Identifying practice supports for advance
care planning (ACP)
 Understanding substitute decision-making
and advance directives in the new legislation
 Identifying opportunities for ACP within the
person's dementia journey
3

4. What is Advance Care Planning?
 Process of capable adult discussing their beliefs, values,
wishes or instructions for future health care with trusted
family & health care provider while capable
 May lead to written advance care plan
 If no advance care planning done: Substitute Decision
Maker (SDM) decides based on health care provider’s offer
of medically appropriate care
 Health care providers and substitute decision-makers
must respect adult’s beliefs, values , wishes and
instructions
4

5. Advance Care Planning
 Ideally done by Family Physician
 Ensure shared understanding of




Diagnosis & prognosis
Concerns or fears
Beliefs, goals and values
Trade-offs they are prepared to make or “what
would be worse than death”?
 Documentation and conversation should
include Substitute Decision Maker
5

6. ACP in Dementia Care
What is unique about dementia & ACP?
 Long course of illness, with changes in cognition
early, therefore preparation very important
 Lack of understanding of dementia as a life-limiting
illness
 Balancing wishes of person living with dementia
with realities of care-giving
 http://www.alzheimerbc.org/Living-WithDementia/I-Have-Dementia/Personal-Planning.aspx
6

7. 7

8. 8

9. 9

10. Health Care Decision making
 Understanding that at end of life, if no ACP in
place, others ( SDM) will need to make decisions
 If person in denial, approach it as “asking all
patients to think about this”
 Addressing person’s values & beliefs:
 What is important about Living Well?
 What would be a good death?
 Any strong beliefs which the person would want
documented in an Advance Care Plan or an
Advance Directive?
10

11. Consent issues
 Decision making in health care based on principles of valid
and informed consent
 CONSENT: Consent is required for all types of health care
provided to adults with two exceptions
 Urgent or emergency health care, and
 Triage of those presenting for care and their preliminary examination,
treatment or diagnosis.
 In all situations if the adult is not capable of providing
consent a health provider must make reasonable efforts to
determine whether the adult has a SUBSTITUTE
DECISION MAKER or has made an ADVANCE
DIRECTIVE specific to the proposed health care.
11

12. Valid consent
 INFORMED: The health care provider explains the
proposed treatment or course of treatment including:
 The condition for which the health care is proposed
 The nature of the proposed health care
 The risks & benefits of the proposed health care that a reasonable
person would expect to be told about
 Alternative courses of health care (and when indicated, the likely
consequences of no treatment)
 The adult is capable of making a decision about whether
to receive or refuse the proposed health care and the
consent is specific to the proposed health care; is given
voluntarily and is not obtained through misrepresentation
or fraudulent means.
12

13. Substitute Decision Making ( SDM)
 A SUBSTITUTE DECISION MAKER under law is obliged to express
the instructions or wishes the adult expressed while capable.
 If an adult is not able to give or refuses consent and it is not an
emergency situation, healthcare providers must try and obtain
consent from a Substitute Decision Maker in the following order:
 Personal Guardian appointed by the court under Patients
Property Act (also called Committee of the Person)
 Representative: Named by capable adult through a
Representation Agreement). Long-term
 (Advance Directive: If both a Representative and an AD no SDM
required if the Representation Agreement explicitly states that AD
can stand alone and covers the specific health care decision)
 Temporary Substitute Decision Maker (see page 20 of the
Guide): Chosen by health care provider- bound by HCCCFAA, shortterm (21 days).
13

14. Personal Guardian
 Appointed by the court under Patients Property
Act by a judge of the Supreme Court (also called
Committee of the Person)
 Can give or refuse consent to any health care
 Guided by the best interest of the adult
14

15. Representatives & Representation Agreements
(RA)
 A capable adult may name a representative in a
representation agreement (RA) (and substitute)
 Two types of RAs:
 Section 7: Routine health care but not life-supporting care
or treatment or issues re physical restraint, moving or
managing the adult
 Section 9: Includes the all of the above
 Different than a Power of Attorney (financial issues)
 Representative makes decisions based on wishes or
instructions expressed while the adult was capable
15

16. Changes to Representation Agreements
NEW September 1, 2011
 No consultation with a lawyer is required to make a
Section 9 representation agreement but suggested

A Representative may not be a paid caregiver or an
employee of a facility in which the adult resides and
through which the adult receives personal or health
care services, with the exception of the adult’s
spouse, parent or child
16

17. Advance Directives (AD)
NEW September 1, 2011
 Advance Directives are written instructions made by
a capable adult to give or refuse consent for health
care directly to the adult’s health care provider and
witnessed by 2 people ( cannot be the representative
or a personal care provider)
 Acted on only when adult is incapable
 If adult also has a representative, then decisions are
based on instructions in AD
 No TSDM is sought unless an exception applies
17

18. Advance Directive
 A valid Advance Directive (AD) is relevant to the
specific type of health care being proposed (e.g.
resuscitation; dialysis; intubation & ventilation)
 If the Advance Directive (AD) refuses consent
to the health care in question a health care
provider must not provide the health care or
must stop & withdraw the health care if they
subsequently become aware of an Advance
Directive.
 AD may not instruct providers to give treatment
that is not medically appropriate
18

19. Temporary Substitute Decision Makers
 Health care providers choose a TSDM (21 days) when
the incapable adult needs health care and the:
 Adult has not done advance care planning, OR
 Advance care planning is an expression of wishes and a
contact list of possible TSDMs and the
 The adult does not have a personal guardian (Committee of
the Person) appointed by the court or a representative, or
the representative named does not have authority
 The Advance Directive does not address the care the adult
needs or is not medically appropriate care
19

20. Temporary Substitute Decision Makers
 TSDM must be 19, legally qualified, willing and available
 The following may be a TSDM (in priority order):
 The adult’s spouse (legally married or cohabitating; same sex
included)
 The adult’s child (ranked equally)
 The adult’s parent (ranked equally)
 The adult's brother or sister (ranked equally)
 The adult's grandparent – New (ranked equally)
 The adult's grandchild – New (ranked equally)
 Anyone else related by birth or adoption to the adult
 A close friend of the adult – New
 A person immediately related to the adult by marriage – New
20

21. In cases of conflict….
 If there is no TSDM or if there is no agreement between
equally ranked TSDMs – HCPs can appeal to the Health
Care Decisions Team at Public Guardian and Trustee
 In cases of conflict: Formal resolution process
 A health care provider can apply to the court if they
feel medically inappropriate decisions are being made
or if a PGT appointed TSDM is not complying with
his/her duties, OR
 Any person if they feel that an AD is not valid on the
basis of fraud or undue pressure or some other form
of abuse or neglect
21

22. O
22
22

23. Support for SDM/Caregivers: Be
prepared for issues in illness trajectory
At end of life:
 Reduced intake: Decreased appetite &
swallowing ability
 Loss of independence & function -> Bedbound
 Incontinence of feces and urine
 Reduced immune response with frequent
infections—pneumonia, UTI
 Prone to delirium
23

24. Typical health care decisions which
require SDM/AD Consent
 May include wishes re these decisions in advance
care plan
 Investigations and treatments




CPR
Use of feeding tubes
Antibiotics for infections
? Investigations/treatments which may necessitate
hospitalization
 Mitchell et al: Importance of proxy’s understanding
of prognosis and clinical complications on decisions
re interventions
24

25. 



Caregiver Support including Support
with Decision-Making
Care giving burden over years therefore
pacing important
Emotional burden therefore need for self
care
Importance of information on illness
Emotional support for decision making
process: e.g. Accepting natural death &
Saying “no” (refusal of consent to aggressive
measures) is OK
25

26. Practice Challenges for GPs
 Patients are often home bound and so
decisions often based on other’s assessment
 The patient & their caregivers may not both
be members of the practice…
 As disease progresses, caregiver’s needs
increase…is their GP aware of situation?
26

27. Community Supports
 Alzheimer's Society: http://alzheimerbc.org/LivingWith-Dementia/Caring-for-Someone-withDementia/Personal-Planning.aspx;
 Caregiver Programs
 Home & Community Care:
 Care coordination with Home Care: Home Support, HCN
Long term care; Supportive care
 Adult Day Care
 Residential Care options
27

28. Resources/References
 http://www.health.gov.bc.ca/hcc/advanc
e-care-planning.html
 http://www.trustee.bc.ca
 http://www.seniorsbc.ca/legal/healthdeci
sions/: Has link to updated Health Care
Providers’ Guide to Consent to Health
Care (2011)
 https://www.bcma.org/news/advancedirectives
 Mitchell et al. (2009). The Clinical Course of Advanced
Dementia. New England Journal of Medicine, 361:1529-38
28

29. Questions
Please type your questions below
in the Q&A box.
29