1. 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 Lakehead U N I V E R S I T Y

2. 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 Lakehead U N I V E R S I T Y

3. 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 Lakehead U N I V E R S I T Y

4. CHALLENGES TO EFFECTIVE ADVANCE CARE PLANNING Lakehead U 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 Lakehead U N I V E R S I T Y

5. 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 Lakehead U N I V E R S I T Y

6. CAPACITY A central issue in advance care planning Lakehead U 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 Capacity Total Capacity

7. POWER OF ATTORNEY FOR PERSONAL CARE Lakehead U N I V E R S I T Y SELECT INDIVIDUAL 16 years or older TO ACT AS YOUR POA WRITE INSTRUCTIONS & SIGN/DATE DOCUMENT SIGNATURE OF TWO WITNESSES 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

8. SUBSTITUE DECISION-MAKER Lakehead U 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

9. 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) Lakehead U N I V E R S I T Y Avoid Medical Jargon Allow Time for Reflection Be Clear & Direct Don’t assume you understand ASK

10. STATEMENTS TO GET THE CONVERSATION STARTED Lakehead U N I V E R S I T Y We ask everybody if they have a living will or power of attorney for personal care. Do you have these? Can you identify a person who you would trust to make health care choices for you if you became unable to do this yourself? We like to discuss with each person what they want for end-of-life care so we can honour their wishes. Can we talk about this now? Ask about values and goals: what makes life worth living now? What do you hope for now and in your future? What would make life not worth living?

11. Have you given the person relevant information in language appropriate to their level of understanding and in their language of fluency? When should attention turn to providing comfort rather than continuing to fight the disease or illness? What kinds of measures or treatments should be considered? Are there any medical treatments which the person fears or does not want? Have you given the person all the available choices and information on what each alternative involves – risks and benefits? QUESTIONS TO ANSWER IN ADVANCE CARE PLANNING Lakehead U 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.

12. ADVANCE CARE PLANNING GUIDE Lakehead U N I V E R S I T Y GET THE INFORMATION YOU NEED Consult people you trust: e.g. family and friends; healthcare providers; lawyer; spiritual advisor Access media information via web sites, books, videos etc. http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/poa.pdf DICUSS ANY THOUGHTS, CONERNS, AND CHOICES Medical treatments, nutrition, hygiene, living arrangements, personal safety issues Revisit the discussion, especially whenever changes in medical status occur Make A Plan Decide on a substitute decision-maker – talk about POA Discuss and decide what is needed in your personal ACP Write down your AD Have copies available for your POA/SDM, family or friends to provide to health care agencies

13. HAVE YOU COMPLETED YOUR PLAN? “ PLANNING IS BRINING THE FUTURE INTO THE PRESENT SO THAT YOU CAN DO SOMETHING ABOUT IT NOW” Alan Lakein

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