Advance Care Planning Getting the information needed to make informed choices about end-of-life treatments

Learning objectives to meet the goals of Knowledge to Practice:

• To provide evidence for the importance of initiating advance care planning discussions

• To outline ways discussions can be initiated

• To provide a guide to assist health care providers giving individuals direction for planning an advance directive

• To provide resources to aid in discussions and planning

LakeheadU N I V E R S I T Y

CLARIFICATION OF THE TERM:ADVANCE CARE PLANNING

A process of communication involving an individual and his/her family, loved ones, and health care providers

May require several discussions for clarification and comprehension of relevant information

Can be initiated while a person is healthy or when a person is experiencing a chronic or terminal illness

Can involve both agency-based and community-based knowledge The person and their designated family Various health care providers Physician, nurses, social worker, pastoral care, and/or case manager

Does not necessarily involve a lawyer or notary

LakeheadU N I V E R S I T

Y

CLARIFICATION OF THE TERM:ADVANCE CARE DIRECTIVE

• Also referred to as an advance care plan

• A written or oral expression of the person’s wishes for care if he/she becomes incapable of communicating or unable to give informed consent

• Can be prepared by a lawyer or by the individual person

• Trusting that his/her wishes will be respected to the extent that this is possible, the person chooses a substitute decision-maker or proxy (legal designation)

• Advance care directives should be revisited periodically to address changes in status of health, beliefs or values

• People change their minds with new experiences

LakeheadU N I V E R S I T Y

CHALLENGES TO EFFECTIVE ADVANCE CARE PLANNING

LakeheadU N I V E R S I T Y

• Fear of facing issues concerning illness and death

• Difficulty in anticipating future wishes

• Not knowing the wishes, values and beliefs of a person prior to incapacity

• Dissonance of values within a family and/or with healthcare providers (i.e. culture & religion)

• Lack of temporal systems to support advance care planning

• Confusing terminology (jargon, understanding complexity of treatments)

• Lack of user-friendly, affordable help and resources

• Ambiguity – vague instructions

LakeheadU N I V E R S I T

Y

BENEFITS TO EFFECTIVE ADVANCE CARE PLANNING

• Person’s voice is heard

• Reduces anxiety about what lies ahead

• Comfort of having a greater sense of control over what may happen in the future

• Avoidance of unnecessary conflicts with family members and/or healthcare providers

• An opportunity to gain understanding and comprehension of decisions and consequences

• Gain appreciation on how treatment options will affect the individual on a personal level

LakeheadU N I V E R S I T Y

CAPACITYA central issue in advance care planning

LakeheadU N I V E R S I T Y

• Capacity may be transient and change over time:

• Delirium• Drug interaction• Lack of sleep• Strong emotions

• Depression• Shock• Denial

• Underlying illness

• Be aware that incapacity may only be temporary

• Reversible causes must be ruled out, treated, and reassessed

• Adults are presumed capable unless proven otherwise

• Common law test for capacity:• Person’s ability to understand the relevant information• Person’s ability to appreciate any reasonably foreseeable consequences of a decision• Equating irrationality and incapacity is a common error

Capacity Assessment Outcomes (Capacity to Consent)Full/Complete

Partial CapacityTotal Capacity

POWER OF ATTORNEY FOR PERSONAL CARE

LakeheadU N I V E R S I T Y

• Can appoint more than one person at any time• Can be altered at any time as long as the person is capable

• Appointed person can resign at any time

• Designated power of attorney is required to:

• Consider any wishes the current incapable person may have

• Consider the values and beliefs the incapable person held

• Consider whether the decision will improve quality of life or prevent it from becoming worse (risk/benefits)

• Produce documentation to health care providers regarding POA status in event of substitute decision-making

SUBSTITUE DECISION-MAKER

LakeheadU N I V E R S I T Y

Hierarchical List under Provincial Legislation to be used if a POA has not designated an individual:

Your spouse, common-law spouse or partner

Your child (if they are 16 years of age or older) or parent

Your parent with right of access only Custodial parents rank ahead of non-custodial parents

Your brother or sister

Any other relative by blood, marriage or adoption

The Office of the Public Guardian and Trustee - last resort

If there is not a designated ‘power of attorney for personal care, an individual needs to be chosen that will :

• act in your best interest

• know you well

• be someone you trust

• be able to make decisions under stress

http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/poa.pdf

COMMUNICATION Points for Health Care Providers to Consider When Discussing ACP

Review, recognize and reflect on personal views of ACP

Direct conversations to the older person

Recognize the amount of details a person wants will vary with the individual

Acknowledge cultural diversity

Do not assume that communication difficulties equate to not understanding or not having anything to say

ASK for help; bring in appropriate assistance when necessary (other team members; interpreters; communication devices)

LakeheadU N I V E R S I T Y

Avoid Medical Jargon

Allow Time for

Reflection

Be Clear

& Direct

Don’t assume

you understan

dASK

STATEMENTS TO GET THE CONVERSATION STARTED

LakeheadU N I V E R S I T

Y

QUESTIONS TO ANSWER IN ADVANCE CARE PLANNING

LakeheadU N I V E R S I T Y

The point in not whether the decision is reasonable or what the health care team feels is most appropriate, rather whether it was reasoned, based in reality and consistent with the person’s previously expressed values and beliefs.

ADVANCE CARE PLANNING GUIDE

LakeheadU N I V E R S I T Y

HAVE YOU COMPLETED YOUR PLAN?

“ PLANNING IS BRINING THE FUTURE INTO THE PRESENT SO THAT YOU CAN DO SOMETHING ABOUT IT NOW”

Alan Lakein

REFERENCESEducating Future Physicians in Palliative and End-of-Life Care (EFPPEC).

(2008). Facilitating Advance Care Planning: An Interprofessional Educational Program: Curriculum Materials. Ottawa : EFPPEC.

Government of Ontario. (2007). A Guide to Advance Care Planning. Retrieved on July 10, 2008 from http://www.culture.gov.on.ca/seniors/english/programs/advancedcare/dontappoint.shtml.

Health Canada. (2006). Advance care planning: the Glossary project: Final report. Retrieved on July 10, 2008 from

http://www.hc-sc.gc.ca/hcs-sss/pubs/palliat/2006-proj-glos/index-eng.php.

Ministry of the Attorney General Office of the Public Guardian and Trustee (2004). Powers of Attorney. Retrieved on July 10, 2008 from http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/poa.pdf.