Learning objectives to meet the goals of Knowledge to Practice:

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 • 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 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. 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 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 CAPACITY A central issue in advance care planning Capacity Assessment Outcomes (Capacity to Consent) Full/Complete Partial Capacity Total Capacity Lakehead U N I V E R S I T Y

7. POWER OF ATTORNEY FOR PERSONAL CARE • 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 Lakehead U N I V E R S I T Y

8. SUBSTITUE DECISION-MAKER Hierarchical List under Provincial Legislation to be used if a POA has not designated an individual: • 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 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 Lakehead U N I V E R S I T Y 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) Avoid Medical Jargon Be Clear & Direct Allow Time for Reflection Don’t assume you understand ASK Lakehead U N I V E R S I T Y

10. STATEMENTS TO GET THE CONVERSATION STARTED Lakehead U N I V E R S I T Y

11. QUESTIONS TO ANSWER IN ADVANCE CARE PLANNING 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. Lakehead U N I V E R S I T Y

12. ADVANCE CARE PLANNING GUIDE Lakehead U N I V E R S I T Y

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. 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.