Download - Ubc dementia+care
1
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
2
Disclosures
Dr. Doris Barwich
&
Pat Porterfield
No disclosures
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
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
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
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-With-Dementia/I-Have-Dementia/Personal-Planning.aspx
7
8
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?
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.
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.
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, short-term (21 days).
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
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
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
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
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
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
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
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
22
22
O
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 -> Bed-bound
Incontinence of feces and urine
Reduced immune response with frequent infections—pneumonia, UTI
Prone to delirium
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
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
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?
27
Community Supports
Alzheimer's Society: http://alzheimerbc.org/Living-With-Dementia/Caring-for-Someone-with-Dementia/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
28
Resources/References
http://www.health.gov.bc.ca/hcc/advance-care-planning.html
http://www.trustee.bc.ca
http://www.seniorsbc.ca/legal/healthdecisions/: Has link to updated Health Care Providers’ Guide to Consent to Health Care (2011)
https://www.bcma.org/news/advance-directives
Mitchell et al. (2009). The Clinical Course of Advanced Dementia. New England Journal of Medicine, 361:1529-38
29
Questions
Please type your questions below
in the Q&A box.