Learning Objectives – Back to the Basics:

1. Learning Objectives – Back to the Basics: • the fundamentals of health care consent, relevant Ontario legislation, and your professional and legal obligations • the connection between health care consent, advance care planning and treatment

2. “The problem with learning from experience is that you get the test before the lesson.” Mad Magazine’s Alfred E. Neuman

3. Personal Reflection: Imagine that in 5 minutes you will be assessed to be mentally incapable of making personal care decisions.

4. Personal Reflection: Imagine that in 5 minutes you will be assessed to be mentally incapable of making personal care decisions. What are some of the things in your life that give you joy, happiness, peace, a sense of belonging?

5. Personal Reflection: Imagine that in 5 minutes you will be assessed to be mentally incapable of making personal care decisions. What are some of the things in your life that give you joy, happiness, peace, a sense of belonging? What does ‘Quality of Life” mean to you?

6. Personal Reflection: Imagine that in 5 minutes you will be assessed to be mentally incapable of making personal care decisions. What are some of the things in your life that give you joy, happiness, peace, a sense of belonging? What does ‘Quality of Life” mean to you? Who will speak for you if you are no longer able to do so?

7. Personal Reflection: Imagine that in 5 minutes you will be assessed to be mentally incapable of making personal care decisions. What are some of the things in your life that give you joy, happiness, peace, a sense of belonging? What does ‘Quality of Life” mean to you? Who will speak for you if you are no longer able to do so? Does this person/people know about your thoughts/values/beliefs and wishes for the future? Have you discussed with them what you might want your treatment/care plan to include or not include?

9. Approaching Death: Improving Care at the End of Life The Institute of Medicine, Washington, D.C., 1997. • “In some respects, this century’s scientific and medical advances have made living easier and dying harder”

10. The Country Singers are way ahead of us! • Tim McGraw Live like you were dying • Garth Brooks If Tomorrow never comes

11. What are the benefits having these discussions?

13. Benefits of Advance Care Planning • Personal wishes are more likely to be respected and acted upon. • Provides comfort and a sense of control at end-of-life care. • Enhances a sense of independence. • Reduces stress and anxiety for those making difficult decisions • Decreases potential for conflict among family members/friends • Increased satisfaction with care • Higher quality of life and death

14. Wright et al found that: The absence of ACP, in all its forms, was associated with: worse patient ratings of quality of life in the terminal phase of the illness, and worse ratings of satisfaction by the family during the terminal illness or in the months that follow death. End-of-life conversations between patients and physicians were associated with fewer life-sustaining procedures and lower rates of intensive care unit (ICU) admissions. Wright, AA., et al. Associations between end-of-life discussions, health care expenditures. JAMA. 2008; 300(14):1665 Zhang et al found that: Patients with advanced cancer who had end-of-life conversations with physicians had significantly lower health care costs in their final week of life. Higher costs were associated with worse quality of death. Zhang, B., et al. Health care costs in the last week of life. Arch Intern Med 2009; 169(3): 480-488.

15. ER Transfers ICU Admissions Unwanted procedures Medication and chemotherapy Diagnostics ALC beds Impact ? Improved Quality of Life and Decreased costs of healthcare

16. Documented goals of care are discordant with patient preferences 63% of the time Full med, no CPR CPR Unsure Mix

17. Ask about prior discussions/documents 25.3% Did the healthcare team … Discuss your prognosis 11.1% 41.8% Provide information about comfort care End of Life 17.2% Provide information about supportive care 12.8% Ask what is important to you 13.7% Discuss risks and benefits of CPR, etc Make a decision about use or non-use of CPR, etc 40.3%

18. Absolutely: Capable Adults with advanced-stage disease (life expectancy less than 12 months) Imperative With: Capable adults with chronic diseases along the illness trajectory or prior to a procedure with associated risk Ideally: Healthy capable adults to create awareness Normalize discussions around Health Care Consent and Advance Care Planning. Begin the culture change! Who should we initiate these conversations with?

20. Advance Care Planning • Only capable people can express wishes about future health care • Wishes are speculative and out of context • Wishes can be expressed in writing, verbally or by any other form of communication • Later wishes, however communicated, expressed while client is capable, prevail over earlier wishes even if the previous wishes were in writing and the later wishes are oral • When a person has expressed wishes about a potential future health condition: • consent has not been acquired • if the patient is incapable when the time comes to provide consent, consent must still be acquired from a substitute decision-maker(s) (except in emergencies)

21. REFLECTION and Expression of WISHES FOR FUTURE CARE (A) Discussion Guide: • Determine client’s current capacity to express wishes about future care. If the person is currently capable to make a specific decision, they are capable to express wishes about that decision. • Identify/determine the client’s future substitute decision maker(s) in accordance with the Health Care Consent Act should they become incapable to make health care decisions in the future. • Suggest the client prepare a Power of Attorney for Personal Care if the client wishes to appoint someone to act in place of the highest ranking substitute decision maker on the hierarchy in the HCCA. • Include future substitute decision maker(s) in the discussion if the client agrees, as well as anyone else the client requests

22. REFLECTION and Expression of WISHES FOR FUTURE CARE (B) • Facilitate reflection and gather information about the client’s wishes, preferences, values, spiritual, religious and/or health beliefs and quality of life indicators that may assist a substitute decision maker(s) to provide an informed consent on the clients behalf should the client be found to be incapable of making the treatment decision. • Assess understanding and clarify misconceptions • Facilitate/encourage ongoing communication with substitute decision maker(s), health care providers, family and friends • Document a summary of the discussion including key details about the process, nature and outcome of the conversation • Provide client with a copy of the documentation

23. Previously expressed wishes Previously Expressed Wishes become void when: • New wishes are expressed while a person is capable - verbally, written or by any other means of communication and to anyone. Previously Expressed Wishesare not relevant when: • The wishes are not applicable in thecontext of the person’s current health condition

24. IMPORTANT Reminder ADVANCE CARE PLANNING IS VOLUNTARY Patients CANNOT be required to complete any hospital or long term care home advance directive forms if they do not want to put their wishes in writing, want to use their own method of communicating or do not want to express any wishes at all.

25. ARE you confused? You are not alone. There is a province wide, lack of foundational knowledge of the Health Care CONSENT Act, the construct of CAPCITY and the implications for Regulated Health Care Providers across all sectors of health care. • Why? • It’s not taught in core curriculums • It’s not part of job training or orientation • It’s not emphasized in our organizational policies and procedures

27. ARE you confused? You are not alone. There is a province wide, lack of foundational knowledge of the Health Care CONSENT Act, the construct of CAPCITY and the implications for Regulated Health Care Providers across all sectors of health care. AhHA! • Why? • It’s not taught in core curriculums • It’s not part of job training or orientation • It’s not emphasized in our organizational policies and procedures OOHHH?

28. Identified Concerns • Facilities/ organizations/ health providers are not always getting informed consent before treatment • Organizations are misusing ACP as a replacement to an informed consent – ACP documents and advance wishes are NOT consents • Organizations are using patient’s “wishes” inappropriately instead of making application to the CCB when the health practitioners disagree with SDMs • A number of organizations use “levels of care forms” inappropriately as consents or ACP documents • Some organizations try to get “pre-consent” – this is not legal This is directly impacting Patient Safety and Quality of Care

29. Relevant Ontario Legislation • Health Care Consent Act, 1996http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_e.htm • Substitute Decisions Act, 1992 http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_92s30_e.htm • Long-Term Care Homes Act, 2007 http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_07l08_e.htm • Personal Health Information Protection Act, 2004 http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_04p03_e.htm This legislation provides the framework for developing an informed plan of treatment and outlines the responsibilities of Regulated Health care Providers in Ontario. It’s the law!

30. Basic principles of consent Before providing any treatment, admitting someone to a long term-care home, or providing any personal assistance service in a long-term care home, health care providers must get a valid, informed consent or refusal of consent from a capable person, either the client if they are mentally capable for decision making or from their appropriate substitute decision maker(s) if they are not mentally capable.

31. What is treatment? Treatment: Any intervention by a regulated health professional for a therapeutic, preventative, palliative, diagnostic, cosmetic or other health-related purpose. Course of treatment: Aseries or sequence of similar treatments administered to a client over a course of time for a particular health problem that they are currently experiencing Plan of Treatment: A plan of treatment is developed by one or more health care providers that deals with one or more of the health problems that a person has and may, in addition, deal with one or more of the health problems that the person is likely to have in the future given the person’s current health condition. A plan of treatment can provide for the administration of various treatments or courses of treatment and may, in addition, provide for withholding or withdrawal of treatment in light of person’s current health condition.

32. What is Valid Consent? 1. Must relate to the treatment2. Must be informed3. Must be given voluntarily4. Must not have been obtained through misrepresentation or fraud • Consent can be withdrawn at any time by a capable client or their substitute decision maker if the client is incapable.

33. What is Informed Consent? • Patient must receive information on the: • Nature of the treatment • Expected benefits of the treatment • Material risks of the treatment • Material side effects • Alternative course of action • Likely consequences of not having the treatment

34. Who Gives or Refuses Consent? • The client provides informed consent if they are capable with respect to the particular treatment decision. • The client’s substitute decision maker provides informed consent if the client is incapable with respect to the particular treatment decision.

35. Definition of Capacity with respect to Treatment • What does capacity mean in this context? Able to understand the information that is relevant to making a decision about the treatment, admission, or personal assistance service as the case may be and able to appreciate the reasonably foreseeable consequences of a decision or lack of decision.

36. Capacity is time and decision specific A person may be … • Capable with respect to some treatments and not capable with respect to others • Incapable with respect to a treatment at one time and capable with respect to the same treatment at other times Important: • Always include client in treatment planning regardless of their current capacity to be the decision maker * Make every attempt to maximize a client’s capacity and ability to communicate

37. Who Assesses Capacity with Respect to treatment decisions? • The health care provider who proposes a treatment • is required to form an opinion about the capacity • of the client to consent to the treatment • If a plan of treatment is proposed , one health practitioner may determine the patient’s capacity to consent to the treatments referred to in the plan of treatment on behalf of all the health practitioners involved in the plan

38. Hierarchy of substitute decision makers – HCCA, 1996 1.Guardian of person 2. Attorney in Power of Attorney for Personal Care http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/poa.pdf 3. Representative appointed by the Consent and Capacity Board 4. Spouse or partner 5. Child or Parent or CAS (person with right of custody) 6. Parent with right of access 7. Brother or sister 8. Any other relative 9. Office of the Public Guardian and Trustee

39. Power of attorneyfor personal care • Creating A Power or Attorney for Personal Care is the only way a person can appoint someone to act in place of the highest ranking substitute decision maker on the hierarchy in the HCCA. • You cannot name a substitute decision maker verbally • To qualify as a POAPC the written document must meet the requirements listed in the Substitute Decisions Act. • A POAPC must: be executed by a client while they are capable, and be witnessed by two people.

40. Requirementsto ACT as Substitute Decision Maker The person highest in the hierarchy may give or refuse consent only if he or she is: a) Capable in respect to the treatment b) At least 16 years old unless the parent of the incapable person c) Not prohibited by a court order or separation agreement from acting as Substitute Decision Maker d) Available e) Willing to act as as Substitute Decision Maker

41. How the hierarchy works • List is hierarchical • If the highest ranking person on the list does not meet the requirement to act, move down to the next highest ranking person. (Even if the highest ranking SDM is the attorney in the POAPC) • All persons on same level of the hierarchy have equal right to be the SDM • (i.e.. all brothers and sisters equally rank and must come to consensus ) • People always have a SDM if they are incapable. The OPGT is SDM if person has no one higher on hierarchy

42. How Substitute decision makers Make Decisions • It is the responsibility of the Substitute Decision Maker to make treatment decisions for an incapable person by: • a) following any wishes of the patient expressed when capable that are relevant to the decision; • and • b) if no wishes are known or are relevant to the particular decision, to act in the best interests of the client • The Substitute Decision Maker is the “interpreter” of the wishes and must determine: • whether the wishes of the patient were expressed when the patient was still capable (and were expressed voluntarily); • whether the wishes are the last known capable wishes or whether the patient changed his/ her mind when still capable, • what the patient meant in that wish; • whether the wishes are applicable to the particular decision at hand

43. EXCEPTION:Emergency treatment required Consent is not required if patient appears to be incapable and: • The person is experiencing severe suffering or is at risk, if the treatment is not administered promptly, of sustaining serious bodily harm. AND 2) the delay required to obtain a consent or refusal on the person’s behalf will prolong the suffering that the person is apparently experiencing or will put the person at risk of sustaining serious bodily harm. Health Care providers must act based on clinical judgement and any known wishes expressed by the client while capable Treatment may continue without consent as long as reasonable necessary to locate the person’s SDM or until the person regains capacity.

44. TREATMENT TREATMENT INFORMED CONSENT EMERGENCY CARE PLANNING REFLECTION and EXPRESSION of WISHES while capable

45. care Planning (A) Care Planning is a process of information sharing between the client, their substitute decision maker and members of the client’s health care team. It addresses the physical, psychological, social, and spiritual needs of the client and leads to the development of a plan of treatment or course of treatment and can include components in addition to medical treatment such as personal care and support requirements, nutrition and activity needs and recreation.

46. Documentation guidelines Document: • Current capacity of client provide informed consent or refusal of consent and your reasoning and if they wish to apply to have your finding reviewed • People present for the care planning discussion • The appropriate substitute decision maker that ranks highest on the hierarchy and that meets the requirements as outlined in the HCCA and their contact information • Details of each component of the treatment/care plan • That you obtained a valid, informed consent or refusal of consent for each component of the treatment plan from the client, if capable, or the appropriate substitute decision maker if the client is incapable. • Document that you discussed when the treatment/care plan will be re-evaluated. Summarize: • Details of the conversation • Information provided about diagnosis, prognosis, the risks, benefits and expected side effects and alternatives to the proposed treatment and the consequences of not receiving treatment • Questions you asked to elicit information, the person’s responses , questions asked by the person and the responses that you provided • The client’s expressed preferences, wishes, values, religious/spiritual and beliefs, that are relevant to the current plan of treatment ** Try to use the client’s own wording when possible

47. How long does consent last? • A treatment plan needs to be re-evaluated and informed consent re-obtained or reconfirmed when: 1) The client is discharged/transferred from current health care team 2) There is a significant change in the client’s health condition 3) A new component of the treatment/care plan is incorporated 4) A new personal assistance service is required 5) The client, if capable, or their substitute decisions maker if the client is incapable, withdraws consent to a component of the care plan or requests a review

48. Conflict resolution Health care providers have an obligation to make every effort to resolve any disagreements that they may have with the client, and/or their substitute decisions makers(s) in respect to treatment decisions. If the health care provider cannot resolve the conflict, he or she must follow the conflict resolution options that are provided in the Health Care Consent Act.

49. Contact Ontario public guardian and trustee when: The OPGT is responsible for making decisions on behalf of incapable people where medical treatment is proposed and there are no other substitute decision makers in the HCCA hierarchy, in that person’s life, who are available, capable and willing to make decisions for the incapable person. 1)Equal ranking SDM’s cannot come to consensus: • as to which of them should make the treatment decision or • as to what particular decision should be made for treatment and therefore cannot provide a valid, informed consent or refusal of consent 2) There is no substitute decision maker that meets the requirements to act Contact: Treatment Decision Unit Monday – Friday 1-800-891-0504 Weekends/Holidays 1-800-387-2127 http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt

50. Applications to the Consent and Capacity Board can be made when: • Client chooses to request a review of a finding of incapacity Form A - Application to the Board to Review a Finding of Incapacity under Subsection 32(1), 50(1) or 65(1) of the Act • Client accepts finding of incapacity but wants the Consent and Capacity board to appoint someone to act as their Representative which is the third highest ranking SDM Form B - Application to the Board to Appoint a Representative under Subsection 33(1), 51(1) or 66(1) of the Act • When there is no court ordered Guardianship or no Power of Attorney for Personal Care in place, and someone wants to have themselves appointed as the client’s Representative Form C - Application to the Board to Appoint a Representative under Subsection 33(2), 51(2) or 66(2) • SDM(s) unsure if wishes are applicable and/or seeks clarification of wishes Form D - Application to the Board for Directions under Subsection 35(1), 52(1), or 67(1) of the Act • SDM or Health Care provider wants permission to depart from known wishes expressed while the client was capable Form E - Application to the Board for Permission to Depart from Wishes under Subsection 36(1), 53(1) or 68(1) of the Act • Health care provider believes that the SDM is not acting according to the client’s known wishes and/or best interests Form G - Application to the Board to Determine Compliance under Subsection 37(1), 54(1) or 69(1) of the Act