2010, Community Law School (Sarnia-Lambton) Inc. This webinar is brought to you by CLEONet CLEONet is a web site of legal information for community workers and advocates who work with low-income and disadvantaged communities in Ontario.

About our presenter… Judith Wahl has been the Executive Director and Senior Lawyer at the Advocacy Centre for the Elderly (ACE) since ACE is a community legal service for low income seniors that focuses on legal issues that have a greater impact on the older population. Judith has organized and taught numerous public legal education programmes on legal issues that arise in day to day work with seniors, including Advance Care Planning - Physicians’ Training Ontario College of Family Physicians and Alzheimer Society of Ontario; Gerontology Programme at McMaster University, Faculty of Social Sciences; the Diversity Training Course at C.O. Bick Police College; as well as Continuing Legal Education Programmes for the Law Society of Upper Canada, Ontario Bar Association, the former Canadian Bar Association – Ontario, and the Canadian Bar Association National.

Advoccacy Centre for the Elderly Health Care Consent and Advance Care Planning - Getting it Right Part I – Health Care Consent Basics Part II- Advance Care Planning Judith Wahl, B.A., LL.B. Barrister and Solicitor Advocacy Centre for the Elderly

Advoccacy Centre for the Elderly Advocacy Centre for the Elderly Legal advice and representation Public legal education programs NEW website address - Mailing address: 2 Carlton Street, Suite 701 Toronto, ON M5B 1J To receive ACE newsletter by please, send to Subject line – “ACE NEWSLETTER registration”

Advoccacy Centre for the Elderly Today’s Webinar Part 2 of 2 Health Care Consent and Advance Care Planning - Getting it Right Part 2 – Advance Care Planning The relationship between Health Care Consent and Advance Care Planning What is advance care planning? Who can advance care plan? Options for advance care planning Who do advance care plans ”speak” to? Difference between advance care plans and health care consent Applications to the Consent and Capacity Board about health care decisions Two Scenarios on consent and advance care planning

Advoccacy Centre for the Elderly Webinar Part I of 2 Health Care Consent and Advance Care Planning - Getting it Right Part I – Health Care Consent Basics Introduction – Health Care Consent and Advance Care Planning Basic principles of health decision making What are health decisions? What is consent and informed consent? Who Gives or refuses consent? What is capacity to consent? Who assesses capacity to consent? SDMs for health decision –Who is the right SDM? How does a SDM make a decision for an incapable patient?

Advoccacy Centre for the Elderly Questions during Webinar Please write your questions in the chat box during the presentation We will also break for questions twice during the presentation after the explanation of what is advance care planning after the explanation of the applications that can be made to the Consent and Capacity Board We will also take questions at the end

Advoccacy Centre for the Elderly Legislation Health Care Consent Act (HCCA) Substitute Decisions Act (SDA) See “Laws” on the Ontario Government website at

Advoccacy Centre for the Elderly Treatment Decision Making Health practitioners must get an informed consent before providing treatment That consent must come from the patient, if mentally capable, or the patient’s SDM if the patient is not capable Only in an emergency may a health practitioner treat without consent

Advoccacy Centre for the Elderly What is Valid Consent? HCCA, s Must relate to the treatment 2.Must be informed 3.Must be given voluntarily 4Must not have been obtained through misrepresentation or fraud

Advoccacy Centre for the Elderly 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

Advoccacy Centre for the Elderly Relationship between Consent and Advance Care Planning (ACP) The patient, when capable, may express wishes about future treatment that may be delivered to him or her when he or she is not mentally capable These wishes may be expressed orally, in writing, or communicated by any other means These wishes Are used by the SDM when making treatment decisions for the patient Are used by the health practitioner when making treatment decisions for the patient in an emergency

Advoccacy Centre for the Elderly Wishes are not consents The wishes are not consents as they are made without the full information necessary to give or refuse an informed consent The SDM must interpret the wish to determine if the wish is applicable to the particular treatment decision he or she must make for the patient Same rule for health practitioners' if they are treating the patient in an emergency The SDM may apply to the Consent and Capacity Board for guidance as to how to interpret the wishes, or to get authority to not follow the wishes under certain circumstances

Advoccacy Centre for the Elderly 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

Advoccacy Centre for the Elderly Decisions can be for present care and care in the future Plan of treatment ….(may) 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 ……may, in addition, provide for withholding or withdrawal of treatment in light of person’s current health condition

Advoccacy Centre for the Elderly 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 Also may describe care and treatment that a person wants in the future when he or she is no longer mentally capable for decision-making about treatment

Advoccacy Centre for the Elderly 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

Advoccacy Centre for the Elderly Advance Care Planning Choice of a person or persons as attorneys in a Power of attorney for personal care (POAPC) must be in writing in a document (a POAPC document) 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.

Advoccacy Centre for the Elderly 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

Advoccacy Centre for the Elderly Problems of Advance 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 Vague language leading to misinterpretation Treatments change as science advances so wishes would likely have been different if could anticipate advances

Advoccacy Centre for the Elderly Hospice Palliative Care Conference

Advoccacy Centre for the Elderly Guide to Advance Care Planning Should have been titled Guide to Health Care Consent and Advance Care Planning Need to get consent or refusal of consent before treatment Advance care planning may be part of the process for patients as it allows them to consider whether they want the SDM highest in the SDM Hierarchy in the HCCA to make treatment decisions for them for them if they are not mentally capable for treatment in the future

Advoccacy Centre for the Elderly Questions? Any questions about the relationship between health consent and advance care planning and the explanation of what is advance care planning?

Advoccacy Centre for the Elderly Rules for ACP Only capable people, age 16 and older, 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 acquired. if the patient is incapable, consent must still be acquired from a substitute decision-maker(s) (SDM(s)) (except in emergencies)

Advoccacy Centre for the Elderly Options for Advance Care Planning Wishes expressed orally Written documents (a) Power of attorney for personal care (b) Written advance directive/living will Wishes expressed by other means (eg. communication board)

Advoccacy Centre for the Elderly 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 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 or want to use their OWN method of ACP or do not want to express any wishes at all

Advoccacy Centre for the Elderly Written Wishes Can be in form of power of attorney for personal care (POAPC) or advance directive/living will POAPC is format in the Ontario legislation POAPC names SDM (attorney) and may also include wishes about care, must be in writing, made when mentally capable, must be signed by person in presence of two witnesses Someone can be appointed as SDM ONLY in a valid POAPC

Advoccacy Centre for the Elderly Written Wishes Advance directive/living will - only mentioned in the legislation as “wishes” Not a specific format - usually just a statement of wishes about health care and no appointment of SDM Only POAPC gives authority to name SDM Living will documents that purport to name someone as SDM cannot be used for this purpose

Advoccacy Centre for the Elderly Written Directives Person CANNOT be required to sign facility advance directive as condition of admission or to receive treatment or NOT receive treatment (ie. no CPR) Only patient when capable can sign either POAPC or advance directive/living will SDM CANNOT advance care plan

Advoccacy Centre for the Elderly DNR Confirmation Form This is a form that is signed by a regulated health professional as a communication to ambulance and fire personnel as to the patient’s directions about resuscitation Without this document ambulance and fire personnel are required to resuscitate Despite this form, if the patient or SDM tell the ambulance or fire personnel to resuscitate, they will resuscitate

Advoccacy Centre for the Elderly 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 health provider and the Patient, if capable, or the patient’s SDM, if the patient is not capable

Advoccacy Centre for the Elderly Who does the ACP speak to? Wishes/advance care plans are directions to future SDMs – NOT to health practitioners except in an emergency Wishes, whether written, oral or expressed in any other manner, are interpreted by SDMs as health providers always need to get consent from capable patients or SDM if patient is incapable

Advoccacy Centre for the Elderly SDM’s Role – CONSENT, not ACP SDMs cannot advance care plan However, if the patient’s present plan of treatment deals 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, provide for the withholding or withdrawal of treatment in light of the person’s current health condition, then the SDM can CONSENT or REFUSE consent to these “future” treatments This is NOT advance care planning

Advoccacy Centre for the Elderly How SDMs Make Substitute Decisions It is the responsibility of the SDM 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 patient

Advoccacy Centre for the Elderly Best Interests Definition SDM to consider: a)values and beliefs b)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

Advoccacy Centre for the Elderly What if the SDM seems not to be making health decisions in accordance with Patient’s Express wishes? 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 Health practitioners need 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

Advoccacy Centre for the Elderly Health Practitioner and Conflict with SDMs If health practitioner in doubt that SDM is fulfilling his/her role: Check if SDM understands the patients condition Check if SDM appreciates implications of the illness, treatments, risks, benefits for the patient Health practitioner should get a second opinion about their own interpretation of illness and treatment options for the patient Make an application to Consent and Capacity Board to direct SDM to follow advance wish(es) of patient or act in best interests or otherwise be removed

Advoccacy Centre for the Elderly Health Practitioner and Conflict with SDMs It is NOT appropriate to just refuse to take consent/refusal of consent from the lawful SDM – the legislation provides the process to seek an answer It is not appropriate to just look at what the advance care plan, if any, states – consent comes from a person not a piece of paper

Advoccacy Centre for the Elderly Applications to Consent and Capacity Board 1.Application by patient to challenge finding of incapacity to make treatment decisions 2.Application by SDM or health practitioner for directions if patient had expressed wish and wish not clear etc. 3.Application by SDM or health practitioner to depart from wishes 4.Application by health practitioner to determine if SDM in compliance with HCCA, s. 21 (wishes/best interests)

Advoccacy Centre for the Elderly Questions? Any questions about How to prepare an ACP? Role of the SDM in respect to the wishes? What can be done if the SDM is not following wishes? About hearings on these issues before the Consent and Capacity Board?

Advoccacy Centre for the Elderly Scenario 1 - What Does the Nurse do? A nurse has been caring for a terminally ill client whose decision, after being given information about his present health condition, treatment options, risks, benefits, is for no resuscitation. The family has been involved in the discussions about resuscitation and has supported the client’s choice. The nurse is at the bedside with the family as the client’s death is imminent. When the client stops breathing, the family members shout, ‘Do something!’ Adapted from Practice Standard on Resuscitation, College of Nurses of Ontario, 1999

Advoccacy Centre for the Elderly Scenario 1 Does the nurse have CONSENT? Consent to what? Does she have a consent to not treat? Did the patient do an ACP or give consent to no CPR? Does the SDM have a role?

Advoccacy Centre for the Elderly CONSENT, not ACP Capable patient Informed consent to no CPR Not an ACP as related to present health condition and had full information Patient is decision maker and not SDM

Advoccacy Centre for the Elderly Time ACP is about planning in “advance” for future situations Discussions about CPR occur in “advance” Advance Care Plan Wrong! Logic?

Advoccacy Centre for the Elderly Time Discussions about CPR happened and consent was acquired A current Plan of Treatment was revised Plan of Treatment Simplistically Right!

Advoccacy Centre for the Elderly Scenario 2 – Is this a Consent? Is this an ACP? How is it Used? Should it be Used? Why is it Used? Mrs Smith is a new resident in a long term care home. Mrs Smith and her daughter Vera were given a number of documents and were asked to sign them. One of these is a Level of care form. LEVEL ONE: Comfort care; no treatment of non-reversible and reversible conditions; no CPR LEVEL TWO: Comfort care; treatment of reversible conditions; no treatment of non-reversible conditions; no CPR LEVEL THREE: Comfort care; treatment of non-reversible and reversible conditions; no CPR LEVEL FOUR: Comfort care; treatment of non-reversible and reversible conditions; full CPR; Transfer to Hospital

Advoccacy Centre for the Elderly Scenario 2 Is this a consent? Is this an advance care plan? How is it used? Should it be used? Why is it used?

Advoccacy Centre for the Elderly If Mrs Smith is Capable with Respect to Treatment Capable patient No info on present health condition No info on specific treatments, risks, benefits, etc. Not a consent Not really much of an ACP as it is so generalized Will be misleading to staff at home High potential for misuse as will likely be treated as if it’s a consent to guide care for Mrs Smith

Advoccacy Centre for the Elderly If Mrs Smith is not Capable to Make Treatment Decisions Is the daughter her SDM, or just the person in the family that is available to assist Mrs Smith on admission? If Vera is the proper SDM, not a consent because Vera would need info on mothers present health condition, specific treatments proposed, risks, benefits, etc. Not a plan of treatment as too generalized, not specific treatments listed, not specific to Mrs. Smith’s health condition Vera cannot ACP as only Mother when still capable could have expressed wishes for herself If completed by Vera will be misleading to staff at home High potential for misuse as will likely be treated as if it’s a consent to guide care for Mrs Smith

Advoccacy Centre for the Elderly If Mrs Smith is Not Capable to Make Treatment Decisions If Vera is the proper SDM, she can give consent to a plan of treatment that includes reference to no CPR if: The present health condition of Mrs Smith is such that discussion of CPR/no CPR is appropriate If Vera has been given all info about Mrs Smith’s present health condition If Vera has been given all the information about this treatment of CPR and its risks, benefits, etc for Mrs Smith In these circumstances Vera is NOT advance care planning but giving or refusing consent to a plan of treatment

Advoccacy Centre for the Elderly Consent to Plan of Treatment Note that if the patient’s condition has changed and the original plan of treatment that the patient consented to is no longer valid because of that change, and the patient is now mentally incapable to give or refuse consent to treatment, or a new plan of treatment, then a new informed consent must be obtained from the patient’s SDM

Advoccacy Centre for the Elderly Summary Consent to Plan of Treatment Current health condition, where the Implications are known Consent to Plan of Treatment Current health condition, where the Implications are known Advance Care Plan Future health condition the implications for which may not be easily known to the person Advance Care Plan Future health condition the implications for which may not be easily known to the person Credit - Chris Sherwood

Advoccacy Centre for the Elderly Questions Any Questions about anything in this presentation?

2010, Community Law School (Sarnia-Lambton) Inc. This webinar was brought to you by CLEONet For more information visit the Health and Disability section of CLEONet at For more public legal information webinars visit: