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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

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Disclosures

Dr. Doris Barwich

&

Pat Porterfield

No disclosures

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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

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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

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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

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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

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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?

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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.

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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.

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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).

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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?

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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

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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

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Questions

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