Inside the Guide

For caregivers, families and service providers
The guide that expedites the search for essential resources for persons with developmental disabilities.

Table of Contents

Consent and Capacity in Adults with Developmental Disabilities

DECISION-MAKING IN THE DEVELOPMENTAL DISABILITY SECTOR

BACKGROUND AND ENCOURAGEMENT

This section of the Guide begins with a brief background and advocacy “pep-talk”, followed by a general overview of consent and capacity in the developmental disability sector that speaks to some unique and key considerations. A review of legislation, principles and rights, informed consent, communications, and situations when you might want to seek consent are then covered. The larger section that follows sets out the steps in the capacity and consent process including sample questions to consider when evaluating capacity. Lastly, the role of the Substitute Decision Maker (SDM), Powers of Attorney (POA), Advance Care Planning, documentation, and the Office of the Public Guardian and Trustee complete the section.

Note: It is important to note that this section of the Guide is not a substitute for legal advice. Further on in this section you will find more information regarding legislation and legal services.

This section is included in the Guide because at some point in the aging process, persons with a developmental disability (DD), caregivers, families, and service providers will need to have some understanding of concepts related to consent, capacity, substitute decision makers, powers of attorney, and will also be required to apply these concepts. As well, many people are anxious about discussing these matters, which can be difficult to understand.

However, the sooner you become aware of and familiar with these concepts, the greater your ability to help a person with DD plan for successful transitions throughout all phases of his/her life.

Although the Guide can’t cover everything in this complex area, it is always helpful and reassuring to start by remembering the GUIDING PRINCIPLES discussed at the beginning of the Guide. The same principles are also relevant here, including:

  • Advocating,
  • Applying a Person- and Family-Centred approach, and
  • Collaborating and Valuing Partner Relationships.

As noted in the earlier section, a key ethical consideration when making planning decisions is that the person’s wishes, well-being, and best interests are the primary considerations. It is also critical to demonstrate respect for the person’s rights and decision-making, and for the concept of individual choice.

Putting Guiding Principles into Action

How do you as a caregiver or service provider put these principles into action when helping a person aging with a DD make decisions? Most importantly, try to put yourself in that person’s shoes, and to keep the person in control and in the “driver’s seat” for as long as possible. Use a team approach to help make plans and decisions where possible, such as meeting with others in the family or those on the care team. Don’t be afraid to ask questions, or to consult externally, such as getting advice from the Office of the Public Guardian and Trustee, or from other third parties such as a family physician.

Taking this type of approach to decision making will help whether you are making decisions about a person’s end of life care, a person’s ability to remain at home, transitioning to a long-term care home, or about any other complex issues.

There are times when service providers are reluctant to help with or facilitate decisions in the absence of an existing policy, or where a policy is not very comprehensive. Such reluctance may reflect underlying anxiety about a person’s safety and related risks. However, no one policy could cover all situations, and the absence of a policy should not prevent caregivers and service providers from acting in a person’s best interest.

Therefore, consider what needs to happen to meet the person’s needs, and who needs to be there for the discussion. For example, if a person wishes to remain at home, and now requires oxygen, what supports, services and training are needed in the home environment to safely meet their health and social needs?

Don’t be afraid of advance care planning – as a service provider, managing end of life care is not all that different from managing other complex issues (although some ethical issues could arise.) For example, with some planning, end of life care can be provided in a group home, rather than automatically transferring a person to a hospice care facility.

GENERAL OVERVIEW OF CONSENT AND CAPACITY

Every person with a DD and their circumstances are unique.

You may find that a person with a DD does not have a power of attorney for personal care (POA), or another substitute decision-maker (SDM) from the hierarchy list in the Health Care Consent Act, 1996 (HCCA) because they have been capable of making their own decisions. This list is set out later in the chapter. Persons with a DD may find it difficult to assign a POA for Personal Care or Property, as the decisions to be made are complex and the level of understanding required to make such decisions is very high. Creating and deciding on elements of a Will can also be complex, and could require the assistance of another person, or persons.

Many persons with a DD do have the capacity and the power to make decisions about matters affecting their own life, including getting married, managing property, receiving personal or health care services, whether to receive treatment, consenting to go into a long-term care home, instructing legal counsel, etc.

Service providers often ask how they will know if a person with a DD is able to make decisions regarding their health care and other services. In Ontario, adults are presumed to be capable, depending on the type of decision being made, unless there are reasonable grounds to believe otherwise. Capacity fluctuates and should be assessed on a case-by-case basis, in accordance with the decision that the person is required to make. Some probing may be necessary in order to verify the relevant facts.

Important Note: Capacity refers to the ability to make a particular decision, at a particular time. It is incorrect to refer to a person as having or lacking capacity for all decisions, at all times. (The exception to this is if a formal finding has been made and a SDM/guardian has been appointed.)

Generally, a person is considered to have capacity to make decisions if they are able to understand the information that is relevant to making a decision and able to appreciate the reasonably foreseeable consequences of such a decision, or lack of a decision (and this is considered a legal test for capacity.) A person with a DD may be quite capable of consenting to treatment for immediate pain relief i.e., taking an aspirin, but the same person may need assistance if consent involves further investigation or surgery (such as a hysterectomy), with potentially more distant, serious, and permanent effects.

It is helpful to remember that all adults expect to be asked about important matters such as medical treatment, where they would like to reside, etc., and all adults wish to have their decisions respected. In an emergency (i.e., unconscious), all adults expect to receive treatment if they are not in a position to consent.

The same expectations hold true for adults with a DD, but decisions may be complicated by literacy and communication challenges, well-meaning but unsubstantiated assumptions, and by the fact that there may be some persons who will not be competent to make certain decisions. Understanding depends on effective communication and accessible information, as well as cognitive abilities.

It is also useful to remember that even if a person does have a POA, this does not mean that the person should not be consulted or that the person cannot make a decision regarding certain matters.

In the following section you will find a brief legislative overview, before other key aspects of consent and capacity are considered.

ONTARIO LAWS GOVERNING CONSENT AND CAPACITY

In Ontario, the key pieces of legislation governing matters regarding mental capacity are the Substitute Decisions Act, 1992 (SDA), the Health Care Consent Act, 1996 (HCCA), the Mental Health Act (MHA), and the Public Guardian and Trustee Act, 1990. The Ontario Human Rights Code takes precedence over these acts, so when dealing with consent and capacity, it is important to consider human rights principles such as:

  • inclusive design,
  • individualized assessment,
  • respect for dignity,
  • autonomy,
  • confidentiality,
  • opting for the least intrusive and restrictive options where possible,
  • integration, and
  • full participation wherever possible.

The SDA, HCCA, and MHA set out five systems for assessing capacity under those statutes:

  1. examinations of capacity to manage property upon admission to or discharge from a psychiatric facility (MHA),
  2. assessments of capacity to make treatment decisions (HCCA),
  3. evaluations of capacity to make decisions about admission to long-term care or for personal assistance services (HCCA),
  4. assessments of capacity to make decisions regarding property or personal care (SDA), and
  5. assessments of capacity to make a power of attorney (SDA).

Although these assessment systems have some areas in common, there are differences including:

  • who conducts the assessments,
  • training and standards for capacity assessors, and
  • information and supports for those undergoing assessments.

SEEKING LEGAL ADVICE

There is a lot written regarding the above legislation and the related concepts. Not every situation can be covered in this section of the Guide, and you may encounter specific situations where legal advice is required.

If you wish to seek legal advice, a free 30-minute telephone consultation is provided by lawyers in the Law Society of Ontario’s Referral Service. To find a lawyer, contact the referral service at 1800-668-7380 or through the Law Society Referral Service page on their website.

Designated capacity assessors can be found by contacting the Capacity Assessment Office toll –free at 1-866-521-1033 or (416) 327-6766 or (416) 327-6424, TTY: 416-314-2687, or in writing to the Capacity Assessment Office at 595 Bay Street, Suite 800, Toronto, ON M5G 2M6. The Capacity Assessment Office is part of the Office of the Public Guardian and Trustee.

You may also wish to consult the Advocacy Centre for the Elderly (ACE) by dialing 1-855-598-2656 or 416-598-2656. ACE provides a range of legal services to low-income seniors in Ontario, including advice and representation to individual and group clients, public legal education, law reform and community development activities.

PRINCIPLES, RIGHTS, & OBLIGATIONS TO CONSIDER WHEN THINKING ABOUT DETERMINING CAPACITY AND ACQUIRING INFORMED CONSENT

This section starts by repeating a few of the definitions and concepts already referenced earlier, before listing additional considerations.

  • Capacity refers to the ability to make a particular decision, at a particular time
  • Assume capacity. All adults have capacity unless and until they are shown not to have capacity. This is a legal test, not a clinical determination.
  • The legal definition of capacity is the ability to understand information relevant to a decision, and the ability to appreciate the reasonably foreseeable consequences of a decision or lack of a decision (HCCA s.4(1))
  • Understanding depends on effective communication and accessible information as well as cognitive abilities
  • Capacity can vary in the same person for different decisions, and can fluctuate over time
  • Consent can be shown behaviourally
  • Consent obtained by force (under duress) is not valid.
  • If you force treatment on a person who has capacity you may be assaulting them
  • If you deny treatment to a person who has capacity you may be neglecting them
  • A health professional has a duty of care to patients
  • If an adult lacks capacity the health professional has a duty to provide treatment and care in the best interests of the adult, even if the adult does not agree
  • A regulated health professional providing the treatment is responsible for assessing the patient’s capacity and for asking for any assistance they need to do so
  • Assessments may require several visits over the “best” period of time for the person
  • Even people who lack capacity may want and have the right to receive information, including statutory rights and information regarding whether or not they have been found incapable.
  • Under the Health Care Consent Act, 1996 (s.10) a person (with capacity) has the right to consent to or refuse treatment, admission to a care facility, or personal assistance service
  • Under the Health Care Consent Act, s.2 (1) “Personal assistance services” means assistance with or supervision of hygiene, washing, dressing, grooming, eating, drinking, elimination, ambulation, positioning or any other routine activity of living, and includes a group of personal assistance services or a plan setting out personal assistance services to be provided to a person who is a resident in a long term care home.
  • This term (personal assistance) applies only to these types of services delivered to residents in a long-term care home as regulated under the Long-Term Care Homes Act and not to people receiving this type of assistance at home or in other health settings
  • When transitioning to a long-term care home, the LHIN placement coordinators (sometimes referred to as “care coordinators”, who are regulated health professionals, are responsible for assessing capacity.

INFORMED CONSENT

“Section 10 of the HCCA states that when a health practitioner proposes a treatment, the health practitioner must get consent before administering that treatment. Consent for the proposed treatment must come from the patient if capable, or if incapable (according to a legal test referenced above) from the patient’s SDM.

The health practitioner must therefore understand consent and take the necessary steps to get that decision (i.e., the patient’s agreement or refusal to proceed with the treatment). An important step is determining whether the patient, or the patient’s SDM, will make the treatment decision. This requires assessing whether the patient is capable to make the particular treatment decision. If the patient is incapable to make the decision, the health practitioner must turn to the patient’s legally authorized SDM.”

The above is an excerpt from HEALTH CARE CONSENT, ADVANCE CARE PLANNING, AND GOALS OF CARE PRACTICE TOOLS: THE CHALLENGE TO GET IT RIGHT Improving the Last Stages of Life, December 2016. Commissioned by the Law Commission of Ontario. (Advocacy Centre for the Elderly.)

If you obtain consent from an applicant (the person with a DD or the SDM) for admission to LTC, the consent must:

  • relate to the admission,
  • be “informed”,
  • be given voluntarily, and
  • not obtained through misrepresentation or fraud.

Informed consent is what a reasonable person in the same circumstances would require to make a decision, including:

  • nature of the admission,
  • expected benefits,
  • material risks and material side effects,
  • alternative courses of action, and
  • likely consequences of not having treatment.

An evaluator who is assessing a person’s capacity to make a decision about admission must also ensure that all of the person’s (or SDM’s) questions about admission are answered.

The following sections discuss guidelines for communications when considering a person’s capacity, situations where you should or must seek consent, and steps in the consent process, including ethical considerations.

SETTING THE STAGE – COMMUNICATION AND ACCESS ARE KEY

Before communicating with a person with a DD regarding key decisions, a provider or evaluator should:

  1. Identify Themselves– a person can’t make valid decisions if they aren’t sure who is informing them or questioning them about the matter. You may have to reintroduce yourself briefly at the start of each contact as some people have trouble remembering faces and names.
  2. Elicit and Explain – allow the person to express their own perception of the issue/problem, and bring the appropriate communication tools e.g., pen and paper. Communication through pictures and written words is preferred by some persons over the spoken language. You might establish time through pictures of sunrises or beds e.g., how many times have you gone to bed experiencing this pain. Remember that an inability to verbally converse can mask a person’s competence. Have the assistance of an interpreter or use of a device to assist the person to communicate and thereby fully demonstrate his/her capacity. Try to remove all physical, language and cultural barriers that could prevent or hamper good communication.
  3. Timing – conduct the assessment at a time when and under circumstances in which the person will likely be able to demonstrate his or her full capacity. More than one visit may be required to assess and verify facts. Try to ensure a private, calm and quiet environment for discussion.
  4. Allow Time and be Flexible– A person with a disability may need more time and assistance/assistive devices, or aids to communicate.
  5. Communicate Directly with the person, even if someone is with them – unless informed otherwise; Try to avoid complicated language or jargon.
  6. Acquire Background re History of Capacity to Consent – does the person have experience making decisions in daily life ( e.g., can he/she choose the clothes that they wear).
  7. Benefits and Risks – a person may only consider pain, so you may need to demonstrate procedures on a colleague or use pictures to explain the temporary nature of the pain, or that it will prevent long-term problems. Demonstrations may be easier to understand than conditional statements such as “if you don’t remove the cyst it will get bigger and more painful.”
  8. Check Comprehension – rather than ask if a person has understood, invite the person to repeat back what you have said, so that you can assess what points may not be understood. You may need to restate the question to verify information. You might also need to ask the question again later in the evaluation.
  9. Check Assumptions– remember that a consent to treatment does not necessarily indicate capacity, just as a refusal for treatment does not necessarily indicate incapacity.
  10. Offer Plain-Language Self-Help Resources – to help persons with disabilities make their own decisions.
  11. Establish an “Accessibility” Office and/or Trained Staff that act as a resource for people with capacity issues to seek information or assistance
  12. Provide Necessary Information – make sure that everyone can provide informed consent- that is, make sure everyone has the information they need to make a decision, including possible outcomes resulting from that decision
  13. Involve Others As Needed– use a support network or circle of support (such as family or friends) to help the person make decisions or interpret what a person wants when they need to make a decision. Have a person present during an assessment to assist the person to feel comfortable and relaxed, if appropriate. (Persons with a DD can participate in decision making if provided with accommodations and supports by health professionals, family and caregivers.
  14. Verify Information – In order to verify information you may need to have the person demonstrate e.g., show that they know how to use the phone.

The Primary Care of Adults with Intellectual and Developmental Disabilities: 2018 Canadian Consensus Guidelines (2018), found on the Surrey Place website, are a helpful resource to prepare for communicating with persons with a DD, including a video, and a tip sheet/guideline called Communicate CARE.

Another excellent source for families and caregivers, health care providers, and non-health care professionals to find out about Person Centred Decision Making , Advance Care Planning, Goals Of Care Discussions, and Health Care Consent is the Advance Care Planning (ACP) website. They provide education and Ontario-based tools and resources that comply with Ontario laws. Some of these tools include online learning modules, case scenarios, definitions, and quick reference guides.

SITUATIONS WHEN MIGHT YOU WANT TO SEEK CONSENT

Primary Care Treatment
  1. When a new treatment or a change in treatment is proposed, unless it had been accepted in a previously agreed-to ‘plan of care.”(Note: it is best practice to always confirm consent as a patient may withdraw consent at any time despite giving previous consent in a care plan.)Obtain consent for the treatment and also for assessment and/or investigation, especially if it is invasive. A health care provider who proposes a treatment/investigation must obtain consent to administer it from the patient, if capable, or from the patient’s legally authorized Substitute Decision-Maker (SDM), if the patient is found to be legally incapable. A SDM must take into account the patient’s beliefs and prior capable wishes and act in the best interests of the person.
  2. When there is a change in the patient’s ability to understand the nature and effect of the treatment.This change can be positive as well as negative (e.g., the patient may develop new skills that facilitate their giving consent, or the patient’s function may deteriorate and therefore require a SDM.)

    Note: A person may be able to give an opinion, but not necessarily be capable of putting their consent in writing. In these circumstances, if a verbal consent is obtained, it may be helpful to have a witness or SDM present.

Transitioning to a New Living Situation

When a person is transitioning into a new living situation such as a long-term care (LTC) setting, under the HCCA, consent for admission to a long-term care home is required. Consent is obtained from a capable patient or their SDM.

An evaluation of legal capacity is not supposed to be associated with a person’s consent or refusal of consent, but an evaluation can be triggered when a family member or health professional believes the person lacks capacity to make a decision on the issue, or when the individual does not agree with the family or health professional’s opinion. Discussions in this area may be triggered by a fall and concerns may arise about the safety of current living situations (e.g. at home, either alone or with someone).

It should be understood that not everyone who applies to LTC requires a capacity evaluation. If there are reasonable grounds to believe that a person’s capacity may be in question, the evaluator should conduct a capacity evaluation. The evaluator will use professional clinical judgement to determine if there are reasonable grounds. Reasonable grounds could be based on a first-hand knowledge of the person and/or information from family or health care providers. However, it is incorrect to assume that a diagnosis, such as dementia, renders a person incapable of making admission decisions.

Assessments of capacity to make admission decisions or personal assistance service decisions can only be made by capacity evaluators, such as placement coordinators who are members of certain health professional colleges (e.g., Social Workers). A list of such evaluators is included in the first part of the next section.

For more detailed information regarding consent when transitioning to LTC, you may wish to consult Part 5 of the Guidelines For Supporting Adults With a Developmental Disability When Applying To, Moving Into and Residing In a Long-Term Care Home.

STEPS IN THE (CAPACITY) AND CONSENT PROCESS

1. Determine Who is the Appropriate Person to Evaluate Capacity

Consider the nature of the decision and who is authorized to evaluate capacity for that decision.

If the decision concerns admission to LTC or concerns personal assistance services provided to a resident in the LTC home, an evaluator (e.g., a placement coordinator), can assess capacity. If the decision concerns treatment, capacity is determined by the health practitioner proposing treatment.

Under the Health Care Consent Act, evaluators include :

  • Audiologists
  • Speech-Language Pathologists
  • Dietitians
  • Nurses
  • Occupational Therapists
  • Physicians
  • Physiotherapists
  • Psychologists

  • Social workers who are members of the Ontario College of Social workers and Social Service workers who hold a certificate of registration for social work

HCCA s. 2(1) and O.Reg. 104/96

2. Preparing for the Capacity Evaluation Process

Here are some high-level points to consider when preparing for a capacity evaluation.

First, remember that the evaluation DOES NOT determine what the decision will be – only WHO will make the decision.

Second, focus on the legal definition of capacity and not on what you believe is in the person’s best interests. For example, is the person able to understand the information relevant to making the admission decision and is the person able to appreciate the consequences of a decision or lack of decision. If yes to both questions, the person is capable (HCCA, s.4(1)).

The following list sets out basic steps to prepare for and conduct the interview.

Prior to the evaluation:

  1. Obtain information to assist in understanding the person’s circumstances (including if there is a SDM, POA).
  2. Bring information about the person’s rights, SDMs, Consent & Capacity, etc. for the person and family or caregiver.

    When you begin the interview:

  3. Tell the person you propose to ask him/her questions in order to conduct your evaluation.
  4. Explain the significance and potential consequences of the assessment.

    During the interview:

  5. Document all questions and answers so that they can be evaluated afterwards. Make note of how long the entire evaluation took, as well as how long the person took to provide a response to each question, how many times the person was asked the same question, etc.
  6. Tell the person the outcome of the evaluation.
  7. If the person is concerned about the outcome –tell them how to appeal the capacity finding with the Consent and Capacity Board and assist them to complete the paperwork necessary to initiate the appeal (forms are available on their website) including using fax, mail or email for the forms to the Board.
3. Determining Capacity

This section on determining capacity is an excerpt from Informed Consent in Adults with Developmental Disabilities (DD), Surrey Place Centre, 2011. As Surrey Place is updating this particular section, this information is not currently available on their website.

Capacity refers to a person’s mental ability to make a particular decision at a particular time. Capacity is question- and decision-specific and should be documented for each decision. Assess capacity to consent for each treatment or plan of treatment. Even if a Power of Attorney (POA) for Personal Care exists, capacity for consent to the particular treatment at this time should be assessed.

Capacity is not static. Capacity can change over time or require distinct abilities depending on the nature and complexity of the specific treatment decision. Specific capabilities may be lost or gained at different times during the life of a patient with DD. Situations may arise where consent to a treatment has been given or refused on a patient’s behalf. However, if that patient then becomes capable of consenting to the treatment in the opinion of the health care practitioner, the patient’s own decision would take precedence over that of the SDM.

Assessed capacity can vary according to the supports provided. Involve the patient wherever possible by adapting the level and means of communicating to him/her; patients require functionally appropriate means of communication and support to realize their capacity for informed consent to, or refusal of, treatment. Offer information in a form you believe the patient will understand (e.g., pictures, symbols, gestures, vignettes).

Involve others who know the patient best, such as family members or paid caregivers, to obtain information or to facilitate the patient’s understanding and communication. Note that although paid caregivers may provide valuable support for decision making, they are not legally permitted to consent to or refuse treatment on behalf of a patient in Ontario and in various other jurisdictions.

If the patient is incapable of giving consent, or if there is uncertainty, follow appropriate legal procedures and ethical guidelines for assessing capacity. If incapable, delegate authority for decision making, which should be based on the patient’s best interests in the circumstances. Generally, only patients with mild to moderate DD will be capable of consenting, whereas those with severe to profound DD will not have that capability but may be able to assent (agree) to a proposed treatment. Whenever possible, even when consent is obtained from a SDM, assent should be sought from the patient and be documented.

4. Consider Ethical Questions, Assumptions, and Stereotypes

When assessing capacity, it can be very easy to fall into stereotypical thinking patterns and assumptions. Remember that age does not determine capacity. Also, if you don’t find the person capable this doesn’t mean you are in conflict with the person. Assure the person you want to find them capable of making the decision.

Generally, consider whether you are:

  • thinking about what is the expedient course of action vs. the challenging course of action that results in best outcomes for the person,
  • making your assessment based on the best interests of the person vs. the autonomy of the person to make a decision, and
  • making your assessment based on risk management vs. the person’s right to make “bad” choices.

Specifically consider the person’s rights, values, beliefs, culture, lifestyle, history, and preferences. If the person wishes to remain at home or in the community, is a long-term care home the most appropriate destination for the person or are there options.

5. Obtain and Document Consent

This section on obtaining consent is an excerpt from Informed Consent in Adults with Developmental Disabilities (DD), Surrey Place Centre, 2011. As Surrey Place is updating this particular section, this information is not currently available on their website.

Consent must be given voluntarily. Allow sufficient time for the patient to understand, consider the information, and ask questions. If the patient requests additional information, provide a timely response.

Consent must be related to a proposed investigation or treatment and be informed by adequate disclosure: The person obtaining consent should be knowledgeable and well-informed about the condition and proposed intervention.

Consent must not be obtained through fraud, coercion or misrepresentation: The patient should not be under any duress or pain. It is important to be familiar with how the person with DD usually exhibits pain (e.g., normal or unique pain responses), which may unduly affect decisions.

6. Decision Making Checklist

The Surrey Place website offers Decision Making in Health Care of Adults with Intellectual and Developmental Disabilities available to download.

Also, here is a sample capacity evaluation and questions that could be used when determining capacity to make decisions.

7. Sample Capacity Evaluation and Questions to Guide Assessment

When evaluating a person’s understanding and appreciation of the situation, you will likely need to see a demonstration of their ability to follow through in certain areas and elicit information as set out in some of the sample questions below.

Introduction

  1. Introduce yourself e.g. I am “X”. I am a placement (care) coordinator with the LHIN.
  2. My role is to evaluate if you are capable of deciding for yourself e.g. whether or not you will live in a long-term care home.
  3. You will be considered capable if you can understand the information that is important for making a decision about whether to live in a long-term care home. You also must be able to appreciate what might happen if you make a decision to live (or not live) in a long- term care home.
  4. I understand that you may feel nervous or anxious about this evaluation. Let me assure you that I do want to find you capable of making this decision.
  5. If I find that you have the capacity to make this decision, you can decide if you will live in a long-term care home or in another place.
  6. If I find that you aren’t capable of making this decision, your substitute decision maker(s), “X” will make the decision on your behalf.
  7. Do you have any questions before we begin?

Does the person understand their care needs?

  1. Let’s get started. Tell me a bit about yourself?
  2. Where do you live now? Can you describe your living arrangements?
  3. Do you live by yourself?
  4. Who do you live with?
  5. Can you tell me about what you get help with at home?
  6. Why do you need help with this?
  7. Who provides you with help? How often do they help you?
  8. What do you think you need help with?
  9. (If the person says they don’t receive or need help, you could follow-up with “At home, you have been getting help with x. Why are they helping you with x if you do not need that help with x?”)
  10. Do you know how to get help if there is an emergency? (You could follow up with show me how you would make the call)
  11. What would you do if you fell down? Show me how you would get up.
  12. I looked in your fridge and noticed that it was empty. What happens when you don’t eat? Show me how you would call the store to get food…etc.

Can the person understand the information you provided about long-term care homes?

  1. What problems are you having at home?
  2. If you go to a long-term care home do you think that could help you with your problem/condition? How?
  3. Do you know what a long-term care home is? (Sometimes they are called nursing homes.)
  4. What kind of help or care do they provide for people who live there?
  5. (Provide information about long-term care homes such as the available personal/medical care assistance, living arrangements (private vs. basic rooms), social and recreational activities).
  6. Visiting policies, costs, potential advantages and disadvantages for the person
  7. Are you familiar with any long-term care homes? Have you visited one?
  8. Do you know anyone who lives in a long-term care home?
  9. Who needs to live in a long-term care home? Why do you think someone would want or need to move to a long-term care home?
  10. Your doctor ( or other healthcare provider) thinks you need to move to a long-term care home. Do you agree or disagree and why?
  11. What will happen if you move to a long-term care home?
  12. What kind of help could you receive if you live in a long-term care home?
  13. What will happen if you refuse to move to a long-term care home?

Although the above questions focus on capacity to make decisions about admission to long-term care, there may also be a need to evaluate a person’s capacity to make a decision about medical treatment.

Consider whether the person understands that you are offering an intervention for a health problem. The person may not understand the connection between the illness and follow up intervention and related risks. The person could feel pressured into making a decision about treatment. The person could be unwell/suffering from a mental condition such as mood disturbance, dementia or delirium that could affect capacity to give consent. (Remember that mental illness may not be an indicator of permanent incapacity. Such a factor could change after receiving medical treatment.)

Sample questions might include:

  1. What problems are you having right now? Can you describe them?
  2. What problem is bothering you most?
  3. Do you know why you are in the doctor’s office/hospital/clinic?
  4. What could be done to help you with your (specify health problem)?
  5. Do you think you are able to have this treatment? Why?
  6. Do you know what could happen if you have this (specify treatment)?
  7. Do you know what might happen to you if you have this treatment? Give me an example.
  8. Do you know if this treatment can cause problems? Can it help you live longer?
  9. Do you know different ways/treatments that might make you better?
  10. Do you know what could happen to you if you don’t have this (specify) done?
  11. Could you become sicker or die if you don’t have this (specify treatment)?
  12. Can you help me understand why you’ve decided to accept/refuse this treatment?
  13. Do you feel that you’re being punished?
  14. Is anyone telling you that you should or should not get this treatment?
  15. Are you hopeful about the future?
  16. Do you think you deserve to be treated?
  17. Do you think anyone is trying to hurt and/or harm you?
  18. Do you trust your doctor and nurse?
8. When a person is not considered legally capable of making a decision

If a person is not capable to make the admission decision, then a SDM can make the decision for him or her. A list of SDMs is set out in the HCCA s. 20(1). See the next section for more information re the SDM.

IDENTIFY THE CURRENT SUBSTITUTE DECISION MAKER (SDM)

If a person is incapable of providing voluntary and informed consent, then consent must be obtained from the highest ranked eligible person identified in the hierarchy set out in the provincial regulations.

That person is the Substitute Decision Maker (SDM).

The hierarchy in Ontario is as follows:

  1. Guardian of the person (under the Substitute Decision Act) with authority to provide consent to treatment (Court appointed)
  2. Attorney named in a Power of Attorney (POA) for Personal Care (this individual may be a different person than POA for Property)
  3. Representative appointed by the Consent and Capacity Board
  4. Spouse or Partner*
  5. Child at least 16 years of age or older than 16 years of age or Parent (or Children’s Aid Society or other lawfully appointed person)
  6. Parent with right of access only (i.e., per custody agreement)
  7. Brother or sister
  8. Any other relative (related by blood, marriage or adoption)
  9. Office of the Public Guardian and Trustee

In the highest ranking, if there are equally ranked SDMs, i.e., three siblings, and they cannot agree among themselves, the HCCA provides that the Office of the Public Guardian and Trustee (OPGT) can take over.

* Partners are not common law partners. The definition here includes a special status for those who have lived together for over a year, and are in an important and significant relationship e.g., two sisters, two friends, not necessarily a sexual relationship.)

Note: In Ontario, a paid care provider cannot function as a SDM, although he/she can come to appointments and convey information to the SDM and health care provider. A paid care provider can also encourage the person they support to be included in the decision-making process and help the person to understand decisions and follow through.

A SDM must make decisions that are in the person’s “best interests”, which means taking into account such factors as:

  • values and beliefs,
  • expressed wishes,
  • risks/benefits of the decision for the person, and
  • whether proposed admission will improve quality of life.

POWERS OF ATTORNEY AND HOW THEY WORK

The following section was taken from the Ontario government website, in the section for the Office of the Public Guardian and Trustee: Make a power of attorney (part of the Ministry of the Attorney General).

A Power of Attorney is a legal document in which you give someone you trust (called your “attorney”) the right to make decisions for you if something happens and you are no longer able to look after matters on your own.

There are two types of Power of Attorney:

  • Power of Attorney for Personal Care – the person you name can make decisions about your health care, housing and other aspects of your personal life (such as meals and clothing) if you become mentally incapable of making these decisions.
  • Power of Attorney for Property – the person you name can make decisions about your financial affairs (including paying your bills, collecting money owed to you, maintaining or selling your house, or managing your investments).

You don’t have to create a power of attorney. But if something happens to you and you don’t have one, other arrangements will have to be made. A family member may have the right to make certain personal care decisions, and can apply to become the guardian of your property. Alternatively, someone else — like a close friend — could apply to the court to be authorized to act for you.

If no suitable person is available, the government may have to step in, through the Office of the Public Guardian and Trustee.

To sign a power of attorney you must be considered mentally capable.

To be considered mentally capable of giving a power of attorney for personal care, it must be clear that you understand the need to choose someone with genuine concern for your welfare, and that there may be a need for that person to make personal care decisions for you.

To be considered mentally capable of giving a power of attorney for property, it must be clear that:

  • you know about your assets (what you own, what they’re worth)
  • you are aware of your obligations to your dependants, and
  • you understand the authority and power you are giving to the person holding Power of Attorney.

Find out more about mental incapacity on the Ontario website.

Your good judgment is key to choosing a trustworthy person for this important responsibility.

The person you choose as your power of attorney for personal care must be at least 16 years old. For a power of attorney for property, the person must be at least 18 years old. Anyone given power of attorney must be considered mentally capable when they are appointed.

Choosing your attorney for personal care

The person you decide to appoint as your attorney for personal care should be someone you trust to make decisions about your housing, food, health, safety, hygiene and clothing. This could be a family member or a close friend. Talk to the person and make sure that he or she is willing to take on this responsibility if needed.

Certain people are not allowed to be your attorney. Do not name any of the following people if they are paid (by you or someone else) to provide services to you, unless that person is also a family member:

  • your landlord
  • any person who provides care for you in the place where you live
  • your social worker, counsellor, teacher
  • your doctor, nurse, therapist, or other health care provider, and
  • your homemaker or attendant

Important legal note: unless your power of attorney says otherwise:

  • An attorney for personal care is only allowed to make medical or long-term care decisions if a medical professional or evaluator finds you mentally incapable of making the specific decision.
  • For all other types of personal care decisions, the attorney can step in if they believe you are incapable — no assessment is required.

Choosing your attorney for property

Important: Be very careful signing a power of attorney for property, because unless you specify otherwise, the person you name can start making decisions immediately. You may want to include a statement in your Power of Attorney that says the attorney can only make decisions if you become mentally incapable.

If you choose to appoint this kind of attorney, make sure the person you choose understands your wishes and agrees to this important responsibility, which includes keeping detailed records of all transactions involving your money and assets.

One option is to use a trust company to act as your attorney. The trust company charges a fee but will be professional and impartial.

Creating your power of attorney

You can create a power of attorney yourself, using the free kit provided by the Ontario government.

You can download the kit, or get a print copy mailed to you by calling:

  • ServiceOntario – toll free at 1-800-267-8097, or 416-326-1234 in the Greater Toronto Area
  • The Office of the Public Guardian and Trustee – toll-free at 1-800-366-0335, at 416-314-2800 in Toronto, TTY: 416-314-2687.

To use the kit, read it carefully and follow the instructions.

Another option is to have a lawyer write your power of attorney. Consider seeing a lawyer if your personal or business affairs are complicated.

Note that each power of attorney must be signed by you and two eligible witnesses. Some people are not allowed to be witnesses, including your spouse and your children.

Always store legal documents in a safe place. Make sure that your attorney, your bank and anyone else who needs to know about these documents has a copy or knows where to get one.

The government does not keep a registry of powers of attorney.

ADVANCE CARE PLANNING

Advance Care Planning (ACP) is not a well-understood concept or process, which may be why some people are hesitant to begin a discussion on the topic. Fortunately, there is now more information available on the various websites, including the Speak Up website, which provides various tools, webinars, posters, and presentations.

A good place to begin learning is from the Advance Care Planning Ontario website resource ACP for Adults Who Are Not Mentally Capable.

What Is Advance Care Planning?

Advanced Care Planning is a process that involves the mentally capable patient:

1. IDENTIFYING his/her future Substitute Decision-Maker (SDM), by either

a) confirming his/her satisfaction with their default/ automatic Substitute Decision-Maker in the SDM hierarchy list in the Health Care Consent Act OR

b) choosing someone else to act as SDM by preparing a Power of Attorney for Personal Care (a formal written document).

2. SHARING HIS/HER WISHES, VALUES, AND BELIEFS – through conversations with the SDM and others that clarify his/her wishes, values and beliefs, and more generally how he/she would like to be cared for in the event of incapacity to give or refuse consent (i.e. What is quality of life to that patient? What is important to that patient in respect to his or her health? )

How Advance Care Planning Is Done

A person may communicate his/her wishes orally, in writing, or by whatever means he/she uses to communicate A VOLUNTARY process.

A Voluntary Process

Health facilities/practitioners CANNOT REQUIRE a patient to do advance care planning OR to use any particular form or method of advance care planning (i.e. levels of care forms)

Advance Care Planning Is Not Informed Consent – Wishes Are Not Decisions

Even if a patient has done advance care planning, health practitioners MUST talk to the patient or the incapable patient’s SDM to get an informed consent before treatment.

Who Takes Direction From Advance Care Planning Wishes?

Advance care planning wishes are a GUIDE or directions for the Patient’s SDM that prepares the SDM to make future health or personal care decisions on behalf of the incapable Patient. Health Practitioners must get informed consent from the Patient or incapable Patient’s SDM even if the patient has done advance care planning in any way – written, oral or by alternative means.

How A SDM Makes Health Decisions On Behalf Of An Incapable Patient

In making decisions on behalf of an incapable patient, SDMs have to:

  • Follow any applicable wishes that were expressed by the patient when capable or
  • If no applicable wishes were expressed when the patient was capable, make decisions in the

patient’s best interest (including considering the patient’s values, beliefs and any other wishes of the patient

Role Of The SDM

The SDM is the “interpreter” of the patient’s wishes, values and beliefs 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 and whether the wish is POSSIBLE;
  • what the patient meant in that wish;
  • whether the wishes are applicable to the particular decision at hand; and,
  • If there are no applicable/capable wishes, how the patient’s values, beliefs, and incapable/inapplicable wishes would apply to the patient’s best interest.
Obligations Of Health Practitioners When Seeking Informed Consent From An SDM

1. Talk to the RIGHT SDM that meets requirements to be an SDM.

2. Tell SDM of obligations to make decision according to patient’s WISHES/ BEST INTERESTS

3. Provide SDM with necessary information to make an INFORMED CONSENT.

4. Confirm that SDM is complying with decision-making obligations, and if not, consider CCB Form G application

To learn more about ACP, you may wish to go to Advance Care Planning Ontario If you search under “Advance Care Planning” a number of useful resources will come up.

DOCUMENTATION

Document and Update the Attorney for Personal Care

  • Make sure to document and update the delegated attorney for Personal Care
  • If the parents have delegated SDM power to another caregiver, this should be documented.
  • Document Plan of Care for Ongoing Treatment.
  • Consent for treatment can apply over a period of time with a specified renewal period and may include items such as adjustment of medications. Having this consent and a documented Plan of Care is also useful for anticipated health problems, given the patient’s current health status.

THE OFFICE OF THE PUBLIC GUARDIAN AND TRUSTEE (OPGT)

The Office of the Public Guardian and Trustee (OPGT) is part of Ontario’s Ministry of the Attorney General.

The OPGT is committed to improving accessibility for clients with disabilities and plays a role in:

  • protecting mentally incapable people,
  • protecting the public’s interest in charities,
  • searching for heirs for estates which the OPGT administers,
  • investing perpetual care funds, and
  • dealing with dissolved corporations.

If you wish to learn more about the role of the OPGT, go to the Ministry of the Attorney General website.

SUMMARY

As noted at the start of the Decision-Making section, this section of the Guide is not a substitute for legal advice. Rather, the section is designed to give you a feel for the concepts related to consent and capacity, highlight some of the legislative requirements, and raise some principles and ethical considerations to take into consideration when applying the concepts.

Building an understanding of Consent and Capacity will enhance your ability to help a person aging with DD plan for successful transitions throughout all phases of his/her life.

Remember to seek professional guidance in this sometimes complicated area and don’t be afraid to ask questions!

RESOURCES

Here are some related resources which may be of interest.

Papers addressing key issues