OLTCA APPLIED RESEARCH EDUCATION DAY

1. November 23, 2010 1 OLTCA APPLIED RESEARCH EDUCATION DAY November 23, 2010

2. November 23, 2010 2 DECISIONS, DECISIONS, DECISIONS:� ISSUES OF CONSENT AND SUBSTITUTE DECISION-MAKING IN LONG-TERM CARE Jane E. Meadus Institutional Advocate Barrister and Solicitor

3. November 23, 2010 3 Advocacy Centre for the Elderly Legal advice and representation Public legal education programs NEW website address - www.acelaw.ca Mailing address: 2 Carlton Street, Suite 701 Toronto, ON M5B 1J3 416-598-2656 To receive ACE newsletter by Email, send Email to gillardt@lao.on.ca with subject line � �ACE NEWSLETTER registration�

4. November 23, 2010 4 ACE Materials A Brand New World: Ontario�s New Long-Term Care Homes Act Every Resident (New Edition to be available shortly from www.cleo.on.ca) Capacity and Consent Pocket Tool (Available from NICE Network nicenet.ca) A Guide to Advance Care Planning (Available from Ontario�s Senior�s Secretariat)

5. November 23, 2010 5 A Brand New World:Ontario�s New Long-Term Care Homes Act

6. November 23, 2010 6 Every resident (being revised)

7. November 23, 2010 7 Tool on Capacity & Consent

8. November 23, 2010 8 A Guide to Advance Care Planning

9. November 23, 2010 9 Problems in Health Consent and Advance Care Planning Facilities/organizations/HCPs are not always getting informed consent before treatment Organizations/HCPs are misusing ACP � using it as a replacement for informed consent � ACP documents and advance wishes are NOT consents Organizations/HCPs are misusing ACP documents and are not getting consent from patients when capable or the SDMs when the patient is not capable for treatment

10. November 23, 2010 10 Problems in Health Consent and Advance Care Planning Using patient�s �wishes� inappropriately instead of making application to the Consent and Capacity Board (CCB) when the HCPs disagree with SDMs Using �levels of care forms� as consents or as ACP documents Having patients �preconsent� or sign blanket consents to treatment Believing that the Attorney for Personal Care is the �only� SDM for health care

11. November 23, 2010 11 What is governed by the Health Care Consent Act? Treatment Admission to long-term care homes Personal assistance services in long-term care homes

12. November 23, 2010 12 Definition Of Treatment HCCA, s.2:Anything done for a therapeutic, preventative, palliative, diagnostic, cosmetic, or health related purpose and includes a course of treatment or plan of treatment but does not include:

13. November 23, 2010 13 Definition Of Treatment (cont�d) Treatment does not include: a) capacity assessments under either the HCCA or Substitute Decisions Act or for any other purpose b) examination to determine general nature of person�s condition c) taking of health history d) communication of diagnosis e) admission to hospital or other facility f) personal assistance services g) treatment that in the circumstances poses little or no risk of harm to the person h) anything prescribed by the regulations as not constituting treatment

14. November 23, 2010 14 Legal Context of Decision-Making (1) Before providing treatment, HCPs must obtain informed consent or refusal of consent to a treatment from the patient, if capable, or If the patient is not capable, the consent is given by the patient�s SDM Consent ALWAYS comes from a person � not a piece of paper!!!

15. November 23, 2010 15 Legal Context of Decision-making (1) In an EMERGENCY, health care providers do not need consent in order to treat But, they must follow any known wishes of the patient in respect to treatment

16. November 23, 2010 16 Legal Context of Decision-making (2) A patient, if mentally capable for treatment decision-making, is the decision-maker A patient can also expresses WISHES about future health treatment (ACP) ACP is NOT a consent � wishes are NOT decisions. Even if an advance care plan exists, the consent/refusal of consent must come from a person

17. November 23, 2010 17 Legal Context of Decision-making (3) If the patient is not mentally capable, then his or her SDM, is the decision-maker SDMs can only consent or refuse consent to treatments being offered and CANNOT Advance Care Plan (ie cannot express future wishes) SDMs must follow the wishes (ACPs) of a patient when making treatment decisions for the patient if known. If no wishes are known then the SDM makes decisions in the �best interests� of the patient.

18. November 23, 2010 18 Consent to One Treatment or to a Plan of Treatment Consent can be to one specific treatment; OR Consent can be to a PLAN OF TREATMENT

19. November 23, 2010 19 Definition of Plan of Treatment HCCA s. 2(1) Developed by one or more health practitioners Deals with one or more of 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, and Provides for the administration to the person of various treatments or courses of treatment and may, in addition, provides for withholding or withdrawal of treatment in light of person�s current health condition.

20. November 23, 2010 20 Treatment in the Future is NOT necessarily ACP A person can give an informed consent to a treatment that takes place or is withheld in the future if the decision for that treatment is relevant considering the persons PRESENT HEALTH CONDITION This is not ACP but consent

21. November 23, 2010 21 What is Valid Consent? HCCA, s. 111. Must relate to the treatment2. Must be informed3. Must be given voluntarily4 Must not have been obtained through misrepresentation or fraud

22. November 23, 2010 22 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

23. November 23, 2010 23 Who Gives or Refuses Consent? In Ontario, consents and refusals of consent come from PEOPLE � not pieces of paper or advance directives Who gives of refuses the consent � the patient or SDM? Depends on whether the patient is mentally capable for treatment Up to the HCP offering treatment to determine capacity

24. November 23, 2010 24 Decisions (Consents) vs. Wishes HCPs must get CONSENTS which are DECISIONS that are obtained from patients after the patients have the necessary information on their PRESENT health condition on which to make an informed decision Wishes are NOT decisions � Wishes are speculative/ made without all the information. Wishes are speculative � made up based on �if� scenarios � �If I have a terminal condition.. If I am in pain.. If I have dementia�� � not on facts

25. November 23, 2010 25 Advance Care Planning Usually involves the selection of a person or persons to act as SDM if the patient becomes mentally incapable for treatment decision making May also describe care and treatment that a person wants/does not want in the future when he or she is no longer mentally capable for decision-making about treatment

26. November 23, 2010 26 Advance Care Planning May focus on end of life care or also include wishes about care and treatment over the course of life May provide information on patients values and beliefs to guide the SDM�s decision-making when the patient is mentally incapable

27. November 23, 2010 27 Advance Care Planning Choice of a person(s) as attorneys for personal care must be made in writing in a Power of Attorney for Personal Care (POAPC) If a person has not prepared a POAPC, they still have a SDM for health care. The SDM is the person or persons highest ranking in the SDM hierarchy list in the HCCA. Everyone always has an SDM for health care because of the legislation.

28. November 23, 2010 28 Advance Care Planning Wishes about future health care do not need to be in writing Wishes may be expressed at any time that a patient is mentally capable in respect to decisions about the subject of the wish Later wishes, however communicated, expressed while capable prevail over earlier wishes This is true even if the previous wishes were in writing and the later wishes are oral

29. November 23, 2010 29 Problems withAdvance Care Plans Wishes change, particularly as health condition changes Wishes may be communicated by the patient to their future SDM that are different than the wishes earlier expressed by the patient to the health team Not possible to anticipate given illness/medical situation Vague language leading to misinterpretation Treatments change as science advances so wishes would likely have been different if could anticipate advances

30. November 23, 2010 30 Rules for ACP Only capable people can ACP Capable patients can express �wishes� which may or may not be �informed� When a person has an advance care plan about a potential future health condition: consent has NOT been obtained if the patient is incapable, consent must still be acquired from the SDM (except in emergencies)

31. November 23, 2010 31 Options for Advance Care Planning Wishes expressed orally Contained in written documents Examples: Power of attorney for personal care Advance directive Living will Level of Care form Wishes expressed by other means (eg. communication board)

32. November 23, 2010 32 Wishes Expressed Orally Some people may not want to write down wishes but will want to express wishes orally Oral wishes about treatment options are as valid as written wishes You cannot appoint a person as an SDM orally Written wishes may be changed by later oral wishes Oral wishes may be recorded in chart or plan of care

33. November 23, 2010 33 Written Documentation Patients CANNOT be required to complete an advance directive, level of care form Hospitals and LTCHs CANNOT require patients/ residents to complete advance directive forms, or use particular advance directive forms Patients/Residents may use their OWN forms or methods or may decide not to express any wishes at all

34. November 23, 2010 34 Written Documents Person CANNOT be required to sign facility advance directive as condition of admission or to receive treatment or NOT receive treatment (ie. no CPR) If person is incapable, SDM CANNOT sign advance directive (ie level of care form) as SDM CANNOT advance care plan

35. November 23, 2010 35 Regulated Documents LTCHA s. 80 � 83 O.Reg. 79/10 s. 227 Any document containing a consent or directive with respect to treatment is a �regulated document� Must comply with all the requirements of the regulations Must be certified by a lawyer

36. November 23, 2010 36 Regulated Documents (cont�d) Cannot prevent a consent or directive re treatment from being withdrawn/revoked Cannot lead person to believe that will be refused admission/discharged if consent not given, withdrawn or revoked Must be separate from agreement re accommodation or other financial matters Must comply with HCCA, including requirements for informed consent Must set out text of s. 83 of LTCHA

37. November 23, 2010 37 DNR Confirmation Form The DNR Confirmation Form is NOT an Advance Directive but is a Confirmation of a Consent to DNR/ Confirmation of Refusal of Consent to resuscitation treatment It is a confirmation of the consent that resulted from the discussion between the authorized HCP and the patient, if capable, or the patient�s SDM, if the patient is not capable

38. November 23, 2010 38 Who Does The ACP Speak To? Wishes/advance care plans are DIRECTIONS to future SDMs � NOT to HCPs except in an EMERGENCY Wishes are interpreted by SDMs and NOT by HCPs HCPs get CONSENTS

39. November 23, 2010 39 How SDMs Make Decisions It is the responsibility of the SDM to make treatment decisions for an incapable person by: following any wishes of the patient expressed when capable that are relevant to the decision; and if no wishes are known or are relevant to the particular decision, to act in the best interests of the patient

40. November 23, 2010 40 Best Interests SDM to consider:  a) values and beliefsb) other wishes (i.e. expressed while incapable)c) whether treatment likely to: i) improve condition ii) prevent condition from deteriorating iii) reduce the extent or rate of deterioration d) whether condition likely to improve or remain the same or deteriorate without the treatment e) if benefit outweighs risks f) whether less restrictive or less intrusive treatment as beneficial as treatment proposed

41. November 23, 2010 41 SDMs Role SDM 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; and whether the wishes are applicable to the particular decision at hand

42. November 23, 2010 42 What if HCP has Concerns about SDMs Decision HCP needs to TALK with the SDM to discuss his/her understanding of the wishes expressed and whether the wishes (if the last capable wishes), are applicable to the decision at hand The SDM may go to the Consent and Capacity Board if the wishes are not clear, if the SDM wants to depart from following the wish

43. November 23, 2010 43 HCPs and Conflict with SDMs SDM can DISAGREE with HCP � as long as is making decision in accordance with the HCCA If HCP in doubt that SDM is fulfilling his/her role: HCP must explain the legal requirements of decision-making to SDM (M., A. v. Benes, 1999, CanLII 3807(ONCA)) Check if SDM appreciates implications of the illness, treatments, risks, benefits for the patient HCP should get a second opinion about their own interpretation of illness and treatment options for the patient Make an application to CCB to direct SDM to follow advance wish(es) of patient or act in best interests or otherwise be removed

44. November 23, 2010 44 HCPs and Conflict with SDMs CANNOT just refuse to take consent/ refusal of consent from the SDM � the legislation provides the process to seek an answer CANNOT just look at ACP, if any � consent comes from a PERSON not a piece of paper

45. November 23, 2010 45 Applications to Consent and Capacity Board

46. November 23, 2010 46 MDS-RAI Sections A9 and A10 on the Minimum Data Set (MDS) 2.0 Canadian Version do not correctly reflect Ontario Law on health decision making and on health consent and advance care planning It looks like this NOW A9 RESPONSIBILITY/LEGALGUARDIAN A10 ADVANCE DIRECTIVES a. Legal guardian a. Living will b. Durable power of attorney/financial b. Do not resuscitate c. Other legal oversight c. Do not hospitalize d. Family member responsible. d. Organ donation e. Endurable power of attorney/health care e. Autopsy Request f. Resident responsible for self f. Feeding restrictions g. NONE OF ABOVE g. Medication restrictions h. Other treatment restrictions i. NONE OF THE ABOVE

47. November 23, 2010 47 Possible Amendments to MDS- RAI to reflect Ontario Law Possible Redraft of two sections on Form � could be also slight variations of this A9 HEALTH DECISION MAKER Mentally Capable Resident/ Patient Guardian of the Person Attorney in POA for Personal Care Representative appointed by CCB Spouse/Partner Child (16 or older) or Parent Parent with access only Brother/Sister Other Relative Public Guardian and Trustee A10 INFORMED CONSENT AND WISHES (ADVANCE CARE PLANNING) (Check all that apply after the full assessment is completed) Plan of Treatment prepared Informed Consent to Plan obtained from Capable Patient or SDM if patient incapable Consent to Do Not Resuscitate Consent to Do Not Hospitalize if at End of Life