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Advance care planning: the Glossary project - Final report

Table of Contents

Appendices

Appendix 1: Advance Care Planning Glossary of concepts and terms

This glossary provides definitions and explanations of terms used frequently in advance care planning. The glossary is meant to be understood by the average reader and does not attempt to provide exact legal definitions. The concepts and terms generally apply to advance care planning by capable adults for health and/or personal care, rather than advance planning for financial and property matters. Terms that are defined elsewhere in the glossary are underlined in the text. The glossary is derived from a study of several resources and information gathered from interviews with key informants in the health, social and legal sectors. Major resources consulted in the development of the glossary are listed at the end of the glossary.

Advance care plan is a term sometimes used to describe an advance directive. The term advance directive is generally preferred in the health and legal sectors.

Advance care planning is a process of reflection and communication in which a capable person makes decisions with respect to future health and/or personal care in the event that they become incapable of giving informed consent. The process may involve discussions with health care providers and significant others with whom the person has a relationship. Advance care planning may result in the creation of an advance directive.[6]

Advance directive for health or personal care consists of instructions given by a capable person, often in written form, about their wishes for health care (treatment) and/or personal care in the event that they become incapable of giving informed consent. The advance directive may appoint a proxy who will assume responsibility for ensuring that the person's wishes are respected. In all Canadian provinces, the Yukon and the Northwest Territories, an advance directive can name a proxy. In five provinces and the Northwest Territories, an advance directive may contain health or personal care wishes that must be followed by health care providers to the extent that the wishes are reasonable, possible and legal (Newfoundland and Labrador, Prince Edward Island, Manitoba, Saskatchewan, Alberta and the Northwest Territories; in these jurisdictions, the law does not require that an advance directive name a proxy).

An advance directive that names a proxy is called a proxy directive. An advance directive that expresses wishes for health or personal care is called an instructional directive. In the five provinces which recognize instructional directives and in the Northwest Territories, an advance directive may be either a proxy directive or an instructional directive or both.

The following are the legal terms used to describe advance directives in Canadian jurisdictions:

  • Advance Directive: Yukon (proxy directive)
  • Advance Health Care Directive: Newfoundland and Labrador; Prince Edward Island (instructional and proxy)
  • Authorization: Nova Scotia (proxy directive)
  • Health Care Directive: Manitoba and Saskatchewan (instructional and proxy)
  • Mandate: Quebec (proxy directive)
  • Personal Directive: Alberta and Northwest Territories (instructional and proxy)
  • Power of Attorney for Personal Care: New Brunswick and Ontario (proxy directive)
  • Representation Agreement: British Columbia (proxy directive).

Advance Health Care Directive is the legal term used to designate an advance directive in the provinces of Newfoundland and Labrador and Prince Edward Island. The advance health care directive in both of these provinces can be either instructional or proxy or both.

Agent is the legal term used in Alberta and the Northwest Territories to designate a proxy named in an advance directive.

Allow natural death means that no treatments will be used to delay death where death is about to happen from natural causes. Some health care providers prefer Do Not Resuscitate as being clearer and less euphemistic.

Attorney for Personal Care is the legal term used in New Brunswick and Ontario to designate a proxy named in an advance directive.

Authorization is the legal term used in Nova Scotia for an advance directive. The Authorization is a proxy directive only.

Best interests of the patient (in the context of health care decision-making) are used to guide decision making where there is no knowledge of the patient's wishes. In determining best interests, the following are usually taken into account: whether the treatment will improve the person's condition, prevent it from deteriorating or reduce the rate of deterioration; whether the benefits of the treatment outweigh the risks; and whether a less intrusive intervention would be as beneficial.

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Capacity is the ability to understand the nature and consequences of the decision to be made and the ability to communicate this decision in any understandable manner. In Canadian law, an adult is presumed to be capable unless determined otherwise. A person must be capable in order to make an advance directive. A person may have cognitive deficits in some areas and still may be capable of making an advance directive or giving a simple direction or expression of wishes about care.

When capacity with respect to informed consent to treatment is in doubt, a determination of capacity may be made by a qualified professional, usually a physician or other health care provider who is offering the treatment. An advance directive only becomes active if the person who made the advance directive is deemed incapable of making an informed decision about the matter in question.

Cardiopulmonary Resuscitation or CPR is a treatment intervention for cases of sudden unexpected cardiac or respiratory arrest. CPR may include mouth-to-mouth resuscitation, chest compression, ventilation, intubation and defibrillation.

Continuing or enduring Power Of Attorney is a Power of Attorney that continues to be valid after the person who made the Power of Attorney becomes incapable of making their own decisions. A proxy directive for health care is sometimes referred to in the legal sector as a durable Power of Attorney for health care.

Dispute resolution is sometimes needed when a person names more than one proxy in their advance directive or when more than one substitute decision maker is involved in making decisions on behalf of an incapable person. A person making an advance directive may specify how the proxies are to act (e.g. jointly or separately), whether the proxies have different or overlapping areas of responsibility, and how disputes should be resolved in cases of disagreement among the proxies. If this is not specified in the advance directive, the process provided for in legislation is used (this varies somewhat depending on the jurisdiction).

Do Not Resuscitate order or DNR order is an order placed by a physician on a person's health record which instructs health care personnel not to attempt resuscitation in the event of heart or respiratory arrest. A physician can place a DNR order on a person's health record in response to an instructional directive or instructions made the patient or on the basis of a judgement that resuscitation would be futile or of no benefit.

Extraordinary measures or heroic measures are vague terms sometimes used in informal language to mean a variety of life-sustaining procedures. Health care providers advise that more precise terms should be used in instructional directives or expressions of wishes, such as cardiopulmonary resuscitation, mechanical ventilation, and so on.

Facilitator in advance care planning is a person trained to help initiate and support communication among patients, families and health care providers about advance care planning. Certified facilitators are an integral component of the Respecting Choices® advance care planning initiatives in development in some provincial health care regions.

Guardian is the legal term used to designate a proxy named in an advance directive in Nova Scotia.

Health Care Directive is the legal term used to designate an advance directive in the provinces of Manitoba and Saskatchewan. The advance health care directive in both of these provinces can be either instructional or proxy or both.

Health care provider or service provider in advance directive or health care consent legislation is a professional who is a member of a professional college or association recognized in that jurisdiction. The professions recognized for the purposes of advance directive legislation may vary from one jurisdiction to another but usually include physicians, nurses and social workers, among others.

Incapacity is the mental inability to understand the nature and consequences of the decision to be made or the physical inability to communicate this decision in any understandable manner, for example, in the event of a severe stroke or coma.

Informed consent is agreement to a health care treatment given by a capable person who is able to understand and appreciate the nature and consequences of the proposed treatment. If a person is incapable of giving consent, a proxy or substitute decision maker may give consent in their place. Unless there is an emergency such that informed consent cannot be obtained, full and informed consent is the standard required for any health care treatment. The option of no treatment is specified as a possibility for informed consent in some legislation.

Instructional directive is an advance directive that states wishes for health care and/or personal care in the event that the person making the directive is unable to give informed consent to such decisions. In jurisdictions where an instructional directive is provided for in legislation (NL, PEI, MB, SK, AB, NT), the instructional directive is designated by the same name as the proxy directive (e.g. in Alberta and the Northwest Territories, both the instructional and proxy types of directive are called Personal Directives.). An instructional directive serves as the voice of the person and can be followed by health care providers without reference to a substitute decision maker.

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Levels of Care forms are used especially by long-term care facilities and some hospitals when a person is admitted. The person is asked to choose among three or four levels of care, typically including: no resuscitation in the event of heart or respiratory failure; comfort measures only; specified treatments; or all necessary interventions to prolong life. Some long-term care facilities require that a level of care form be completed as a condition of admission to the facility.

The legal status of these forms is dubious, according to several key informants, although there have been no legal challenges to them as yet. Long-term care facilities justify their use to help in decisions about emergency treatment and the possible need to transfer an incapable person to hospital. Critics of the use of these forms state that not only are they illegal, but also that the decision about treatment should be made when the need arises, rather than several months or years in advance. Most health care professionals and patients are not aware that these forms do not have legal status and that persons cannot be compelled to complete them as a condition of admission to a facility. Given the shortage of spaces in facilities, most people are unlikely to raise objections to the forms for fear of being denied admission.

Some health care providers are concerned that Levels of Care forms may be seen as substitutes for true advance care planning.

Living will is an informal term not used in any legislation in Canadian jurisdictions. The term living will originated in the United States in the 1990s and was largely popularized by the media. The definition of living will varies with the source consulted. Most key informants understand it to mean an expression of wishes for treatment in the event of incapacity to give informed consent in the nature of an instructional directive. Because the term is widely recognized by the public, health care providers and lawyers often use it to start conversations about advance care planning. Most professionals prefer to use the term advance directive.

Mandate in anticipation of incapacity is the legal term used to designate an advance directive in Quebec.

Mandatary is the legal term used in Quebec to designate a proxy named in an advance directive (Mandate) .

Mandator is the term used in Quebec legislation to designate the person creating a mandate in anticipation of incapacity.

Mature minors are persons younger than the legal age of majority who may be able to give informed consent if they are judged by health care providers to be capable of doing so. There is no consistent fixed age at which a person is considered able to make an informed decision and each case is judged on its merits. Assent to treatment for children is usually given by their parents or guardians who must decide in the child's best interests, not necessarily as the child would decide. A substitute decision maker, in contrast, decides as the person would if they were capable.

In some jurisdictions, persons as young as 16 can make advance directives.

Next of kin, family members, or relatives are usually defined in legislation dealing with advance directives or substitute decision making as being legal or blood relatives (see spouse). Some legislation includes friends or "persons with a special interest" in the hierarchical list of substitute decision makers.

No Code is an expression used by health care providers to indicate that no action will be taken in the event of a sudden event such as heart failure. Since specific codes refer to responses to specific situations, No Code can pertain to one event and not another. When No Code refers to cardiopulmonary resuscitation, a No Code order is equivalent to a Do Not Resuscitate order.

Palliative care or hospice palliative care is care aimed at relief of suffering and improving the quality of life for persons who are living with or dying from advanced illness or who are bereaved.

Paramedics, also known as Emergency Medical Responders, are professionals trained in emergency patient care and transportation. They are normally the first responders to emergency health care calls to 911.

Patient or client-centered care is health care based on the principle of self-determination for the patient or client and respect for the patient's or client's wishes to the extent that is possible in the circumstances.

Person making the advance directive is referred to in legislation by various terms, including: adult, director (Northwest Territories), donor (New Brunswick), grantor (Ontario), maker, mandator (Quebec) or person.

Personal care may be considered to include health care and also assistance with daily living and decisions about where a person will live and with whom. It may include decisions about admission to care facilities.

Personal Directive is the legal term used in Alberta and the Northwest Territories for an advance directive, which may be either an instructional or proxy directive, or both.

Power of Attorney is a written instrument authorizing a person to act as agent on behalf of another person to the extent indicated in the instrument. The most common types of Power of Attorney are for property and financial management and, in advance care planning, for health and personal care.

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Power of Attorney for Personal Care is the legal term used to designate an advance directive in the provinces of New Brunswick and Ontario. The Power of Attorney for Personal Care in both of these provinces is a proxy directive only.

Proxy is a person named in an advance directive to make health and/or personal care decisions on behalf of the maker of the advance directive when that person becomes incapable of giving informed consent; sometimes referred to as a health care proxy. Most jurisdictions allow for the naming of more than one proxy in an advance directive.

The following are the legal terms used to describe a proxy in Canadian jurisdictions:

  • Agent: Alberta and Northwest Territories
  • Attorney for Personal Care: New Brunswick and Ontario
  • Guardian: Nova Scotia
  • Mandatary: Quebec
  • Proxy: Prince Edward Island; Manitoba; Saskatchewan; Yukon
  • Representative: British Columbia
  • Substitute Decision Maker: Newfoundland and Labrador.

Proxy directive is an advance directive that names a person (proxy) or persons (proxies) who will make decisions in place of the person making the advance directive if that person becomes incapable of making their own informed decisions about health and/or personal care. The proxy is obligated to be guided by any instructions or wishes made by the person while they were capable and/or by the proxy's knowledge of the person's values and beliefs.

Reciprocity is the legal recognition of an advance directive created in another jurisdiction, usually on the condition that the advance directive complies with the law in the jurisdiction where it will be used and was valid at the time and according to the laws of the jurisdiction where it was made.

Representation Agreement is the legal term used to designate an advance directive in British Columbia. The Representation Agreement is a proxy directive only.

Representative is the legal term used in British Columbia to designate a proxy named in an advance directive.

Revising or revoking an advance directive is provided for in legislation governing advance directives. The most recent version of the advance directive is considered to be authoritative. A verbal expression of more current wishes of the patient on the same issue covered by an earlier advance directive can supersede an earlier written version of the advance directive. The changing of a proxy requires a new or revised written advance directive. Alberta is the only jurisdiction that allows a person to have more than one personal directive in effect at a time, provided that the versions are not in conflict.

Spouse in legislation dealing with advance directives or substitute decision making usually means a legally married partner or one in a relationship of cohabitation or other recognized form of intimate relationship. In all jurisdictions that have legislation dealing with advance directives or substitute decision-making, a spouse cannot act as proxy or substitute decision maker after a divorce or annulment. In some jurisdictions, a legal separation disqualifies a spouse from acting as a proxy or substitute decision maker. A former spouse, however, may qualify as a friend of the interested party under relevant legislation.

Substitute decision maker is the general term used to designate a person who is appointed to make health and/or personal care decisions on behalf of a person who is incapable of giving informed consent. A proxy is a substitute decision maker appointed in an advance directive. If there is no advance directive naming a proxy, then next of kin or other substitute decision makers (e.g. friends or health care providers) will usually be named in legislation to act in a hierarchical order, beginning with the spouse. New Brunswick, Manitoba, Alberta and Nunavut do not have a default hierarchical list of substitute decision makers provided for in legislation. In practice, next of kin would be consulted where possible.

Substitute Decision Maker is the legal term used in Newfoundland and Labrador to designate a proxy named in an advance directive.

Treatment in most legislation means anything that is done for a therapeutic, preventive, palliative, diagnostic, cosmetic or other health-related purpose, and includes a course of treatment or plan of treatment.

Wishes, preferences, values, or beliefs are recorded or communicated by a capable person with the intention of guiding a proxy or other substitute decision makers in their advocacy of what the person would have decided in the event that the person becomes incapable of informed consent with respect to treatment and/or personal care. The wishes may be recorded in an instructional directive, which has legal status in six jurisdictions (NL, PEI, MB, SK, AB, NT), or they may be expressed separately in any form: in writing, audio or videotape, in conversation with health care providers or potential substitute decision makers, or by any other means. In other provinces and the Yukon, where instructional directives are not recognized in legislation, the person's wishes must still be taken into account by proxies or other substitute decision makers and health care providers as long as the wishes are reasonable, possible and legal.

Withdrawing and withholding treatment are considered to be treatment options requiring informed consent. A physician, however, may not be obligated to offer treatment that he or she judges to be futile or non-beneficial (e.g. Cardiopulmonary resuscitation) but should discuss this with the patient or proxy, as the case may be, as part of full and informed disclosure in keeping with the principles of the Canadian Medical Association's Code of Ethics.[7]

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Major sources for the Glossary:

  • Canadian Council on Health Services Accreditation. CCHSA's Accreditation Program Glossary. 2006.
  • Canadian Healthcare Association, Canadian Medical Association, Canadian Nurses Association and Catholic Health Association of Canada. Joint Statement on Resuscitative Interventions (Update 1995); Joint Statement on Preventing and Resolving Ethical Conflicts Involving Health Care Providers and Persons Receiving Care, 1999.
  • Canadian Hospice Palliative Care Association definitions. http://www.chpca.net
  • Canadian Medical Association. CMA Code of Ethics (Update 2004).
  • Canadian Nurses Association. Joint Statement on Advance Directives.1994; Position Statement on End-of-Life Issues. 2000.; Code of Ethics for Registered Nurses. 2002.
  • Dalhousie University Health Law Institute End of Life Project Glossary and Advance Directives brochure. http://as01.ucis.dal.ca/dhli/cmp
  • Fraser Health Authority (BC). Advance Care Planning: Let's Talk. Glossary.
  • Interviews with key informants in the health, legal and social sectors.
  • Manitoba Law Reform Commission. Substitute Consent to Health Care. Report #110. 2004.
  • Merriam-Webster's Collegiate Dictionary, 10th edition. 2001.
  • Provincial and territorial legislation and consumer guides dealing with advance directives and health care consent (see Appendix 5 - Resources)
  • University of Toronto: Ian Anderson Program in End-of-Life Care. Module 4: End-of-Life Decision-Making. 2000.

Appendix 2: Brief overview of legislation and practice in Canadian provinces and territories:[8]

Common or similar provisions in provincial/territorial legislation

All Canadian provinces and territories have legislation dealing with advance health care directives except Nunavut, which provides for powers of attorney for property and financial matters only. There is no federal legislation dealing with advance care planning.

In jurisdictions where an instructional directive is recognized in legislation (Newfoundland and Labrador, Prince Edward Island, Manitoba, Saskatchewan, Alberta and the Northwest Territories), there is no requirement to appoint a proxy. The wishes expressed in the instructional directive must be followed where they are reasonable, possible and legal. In these jurisdictions, a person may create either an instructional directive or a proxy directive or both (often in the same document).

Most advance directives cover health and personal care, such as hygiene, nutrition and where the person will live or receive treatment. In some jurisdictions, (e.g. Ontario under a Power of Attorney for Personal Care) the maker of an advance directive can restrict the areas in which a proxy can make decisions.

Onus on maker of advance directive or proxy to bring advance directive to the attention of health care providers

In all jurisdictions, the onus for bringing the advance directive to the attention of health care providers rests largely with the maker of the advance directive, the proxy or other substitute decision maker. In some jurisdictions, the maker of an advance directive is required to inform their physician or health care system of the existence of the advance directive. In some jurisdictions (e.g. Quebec), an advance directive can be registered with provincial authorities so that it is easily located when required. Legislation varies according to jurisdiction with respect to the duty of the health care provider to become aware of a patient's advance directive.

Expression of wishes for care and treatment

In all jurisdictions, whether or not an instructional directive is recognized in legislation, the wishes of the patient which were expressed when he or she was capable must be taken into account by the proxy or other substitute decision maker and the health care provider, if these wishes are known. The wishes may be expressed in writing, orally or in any other form. Government-issued guidelines in the Yukon, for example, recommend expression of wishes in writing, orally, on audiotape, videotape or by any other means. Provincial/territorial guidelines for consumers who are developing advance health care directives usually include advice about communicating treatment wishes to proxies or other substitute decision makers and to the personal physician or other health care providers. The legislation in Newfoundland and Labrador requires makers of advance health care directives to communicate the contents of their directive to a health care professional. Yukon guidelines advise makers of directives to register them with the territorial health care plan and with their local hospital.

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Informed consent

Canadian law presumes that persons 16 years of age and older have the capacity to consent to or refuse care. All jurisdictions recognize the right of patients to give informed consent to treatment decisions provided the patient is capable of giving such consent.

In general terms, informed consent to treatment requires that the person understand the information given and appreciate the probable risks and benefits of consenting to or refusing the treatment. The option of no treatment is included as a possibility for informed consent in some legislation. Some legislation requires that alternative treatments or courses of action be explained where relevant. Treatment is usually understood to mean any examination, procedure, service or treatment done for a therapeutic, preventive, palliative, diagnostic or other health-related purpose.

Presumption of capacity

All jurisdictions presume that an adult is capable of making informed decisions, including the development of advance directives or consenting to treatment or admission or discharge from a health care facility, unless they are judged to be incapable. A general determination of capacity is usually made by a health care provider, which in many jurisdictions includes physicians, nurses social workers and psychologists. A determination of capacity to make an informed decision about a specific health care treatment is usually made by the health care professional providing the treatment. In some cases, this determination must be verified by a second health care professional. In Quebec, the determination of incapacity must be confirmed by court order before the advance directive (Mandate) can take effect.

Most legislation recognizes that capacity may vary from time to time or with respect to consent to some care and treatment options and not others. In these cases, the advance directive would govern only the areas in which the person is incapable of giving informed consent. Some legislation requires that assessments of incapacity be reviewed regularly.

If a person who has been deemed incapable of making treatment decisions is later deemed to have regained capacity, the person can then give informed consent to treatment decisions and the advance directive is not in effect unless the person is again deemed incapable.

Some jurisdictions recognize that the patient's inability to communicate, even though they may possibly be mentally capable, requires that consent to treatment be given by a proxy or other substitute decision maker.

Persons who are younger than the age of majority may be considered mature minors who are capable of giving informed consent to treatment. Each case is usually assessed according to the person and the circumstances. Mature minors usually do not make advance directives because the minimum age for making an advance directive ranges from 16 to 19, depending on the jurisdiction. If a minor is deemed incapable of giving consent to treatment, the parent or guardian is their surrogate decision maker.

Guidance in decision making

Most legislation includes guidelines for decision making by proxies or other substitute decision makers and health care providers, whether or not instructional directives are recognized in that province or territory. These apply when the patient is deemed incapable of giving informed consent.

The usual guidelines in legislation for decision-making by proxies or other substitute decision makers and health care providers are:

  • Follow the patient's instructions in an advance directive or other document or form of record. The most recent version of the patient's wishes must be followed. If verbal wishes have been expressed more recently than the written instructions, the more recent verbal wishes prevail.
  • If there are no known instructions, the decision must be guided by knowledge of the patient's values, principles or beliefs. This information can be inferred from knowledge of their life, actions and statements.
  • If there is no way of knowing what the patient's values, principles or beliefs are, the decision is guided by the best interests of the patient, taking into consideration:
    • the extent to which the proposed treatment or no treatment would cause the patient's condition to improve, or prevent or reduce deterioration of the patient's condition.
    • consideration of the risks and benefits of treatment or no treatment
    • whether a less intrusive treatment would be as beneficial as the proposed treatment.

Multiple proxies

All jurisdictions (except New Brunswick, which does not specify this in legislation) allow for the naming of more than one proxy in a proxy advance directive. Provincial/territorial legislation usually allows the maker of the advance directive to choose how the proxies will act, either jointly or separately, how agreement will be reached among the proxies and how decisions will be reached when the proxies cannot agree.

If the maker of the advance directive does not specify how the proxies should act, legislation usually provides a process for acting and for dispute resolution. Since the legal process for dispute resolution may not correspond to the maker's wishes, it is important for persons to consider including some guidance in their advance directive about the roles of multiple proxies and dispute resolution.

Substitute decision makers

The term substitute decision maker includes proxies and other persons who may be asked to give consent to treatment when a patient is deemed incapable. In Newfoundland and Labrador, the term Substitute Decision Maker is used to indicate a proxy in the legislation governing advance directives. The other jurisdictions use a variety of terms to indicate the proxy named in the advance directive: Agent (Alberta and Northwest Territories), Attorney for Personal Care (New Brunswick and Ontario); Guardian (Nova Scotia); Mandatary (Quebec); Proxy (Prince Edward Island, Manitoba, Saskatchewan and Yukon); and Representative (British Columbia). When there is no advance directive, health care providers will ask next of kin to act as substitute decision makers.

In most legislation, substitute decision makers are named in a hierarchical list in the order in which they would be asked to give substitute consent to treatment. The list usually includes:

  • legal guardian or some other court-appointed tutor or trustee
  • proxy named in an advance directive
  • Next of kin:[9]
    • spouse (usually unless separated or divorced; spouse in most jurisdictions includes those legally married, co-habiting or in a recognized intimate relationship who may not be legally married)
    • adult children
    • parents
    • other relatives
    • friend
    • person who shows a special interest in the mandator (Quebec)
  • If there are no next of kin:
    • health care provider (Newfoundland and Labrador; Yukon)
    • health care provider may provide treatment (Saskatchewan)
    • the relevant provincial/territorial body or official may make decisions or appoint someone to make decisions.

Emergency health care

Most jurisdictions allow for treatment decisions to be made by health care providers in emergency situations if the patient is not capable of giving consent. In these cases, where time is of the essence and a quick decision must be made by the health care provider, there is no requirement for the advance directive to be consulted or followed. If an advance directive exists, if the health care provider is aware of it and if the wishes expressed in it are clear and legal (e.g. a request that no resuscitation be performed in the event of heart or lung failure), then the health care provider may follow the wishes in the advance directive in an emergency situation.

Paramedic personnel and calls to 911[10]

The situation with respect to resuscitation after emergency calls from home or long-term care facilities to 911 involving the services of paramedic personnel varies somewhat according to the jurisdiction involved. In the absence of appropriate documentation, paramedic personnel are legally obligated to attempt resuscitation. Appropriate documentation would consist of a Do Not Resuscitate order signed by a physician which must be shown to paramedic personnel or, in jurisdictions where an instructional directive is recognized, a valid copy of the instructional directive stating that the patient does not wish resuscitation. A Do Not Resuscitate order can be a standing order and does not have to be rewritten each time a call is placed to 911.

In the absence of appropriate documentation, paramedic personnel must start resuscitation efforts based on the presentation of the patient. If resuscitation efforts have no effect, paramedic personnel will call the physician to request the right to discontinue resuscitation.

Contrary to the belief of some key informants, a body does not necessarily have to be transported to hospital in order for death to be certified. A coroner or their agent (sometimes a police officer) can certify death in the home or long-term care facility. Paramedic personnel will usually call the coroner and wait with the body until the coroner or the coroner's agent arrives.

Given the statement by some informants that physicians sometimes advise against calling 911 if the patient does not wish resuscitation, this situation needs further study and clarification.

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Conflict of interest: witnesses

In order to avoid conflict of interest and potential abuse of power, most jurisdictions exclude as witnesses to an advance directive any proxy named in the advance directive or their spouse. Some jurisdictions also exclude as witnesses the child or parent of anyone named in the advance directive, the employee or agent of anyone named in the directive, anyone under legal age or anyone unable to understand the type of communication used by the person making the advance directive.

Revising or revoking an advance directive

All jurisdictions with advance directive legislation have provisions in their legislation for a capable adult to revise or revoke an advance directive. The most recently dated advance directive is valid and makers of advance directives are usually advised to recall and destroy copies of previous advance directives. Alberta is the only province that allows a person to have more than one advance directive at a time; in this case, the different versions of the advance directive must deal with different matters and cannot be contradictory. (e.g. A person may want to change their proxy (Agent) without rewriting the instructional portion of their personal directive. In this case they would have two personal directives.)

Protection from liability

All jurisdictions with advance directive legislation except Nova Scotia, New Brunswick and Quebec include in the legislation protection from liability for health care providers and substitute decision makers for actions taken (or not taken) with respect to treatment decisions as long as actions were taken in good faith and in accordance with the law. British Columbia does not offer protection from liability to health care providers under the Representation Agreement Act, but does under the Health Care (Consent) and Care Facility (Admission) Act. Protection from liability in provincial/territorial legislation covers civil matters which are within provincial/territorial jurisdiction. Criminal matters are governed by the Criminal Code of Canada, which does not contain specific protection from liability for health care providers or substitute decision makers who are acting according to advance directives.

No standard form

Most jurisdictions offer a standard form for making an advance directive but this form does not have to be used as long as the advance directive conforms to the law. Most provide consumer-friendly guides online. The services of a lawyer may be required in New Brunswick because of the requirement that a power of attorney for personal care be created under seal. In Quebec, a notary or lawyer is usually required to create and register a mandate. A Section 9 Representation Agreement in British Columbia must be witnessed by a lawyer who must also complete a certificate (Section 9 refers to the relevant section in the British Columbia Representation Agreement Act).

Appendix 2: Brief overview of legislation and practice in Canadian provinces and territories - Quick reference: terms used in provincial/territorial legislation
Jurisdiction Type of advance directive provided for in legislation Instructional directive Proxy directive Proxy
Newfoundland and Labrador Instructional and proxy Advance Health Care Directive Advance Health Care Directive Substitute decision maker
Nova Scotia Proxy directive ------- Authorization Guardian
Prince Edward Island Instructional and proxy Advance Health Care Directive Advance Health Care Directive Proxy
New Brunswick Proxy directive ------- Power of Attorney for Personal Care Attorney for personal care
Quebec Proxy directive ------- Mandate Mandatary [the maker of a Mandate is called the Mandator]
Ontario Proxy directive ------- Power of Attorney for Personal Care Attorney for personal care
Manitoba Instructional and proxy Health Care Directive Health Care Directive Proxy
Saskatchewan Instructional and proxy Health Care Directive Health Care Directive Proxy
Alberta Instructional and proxy Personal Directive Personal Directive Agent
British Columbia Proxy directive ------- Representation Agreement Representative
Yukon Proxy directive ------- Advance Directive Proxy
Northwest Territories Instructional and proxy Personal directive Personal directive Agent
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Web links: provincial and territorial legislation and consumer guides to advance care planning:

Some of the hyperlinks provided are to sites of organizations or other entities that are not subject to the Next link will take you to another Web site Official Languages Act. The material found there is therefore in the language(s) used by the sites in question.

Alberta:
British Columbia:
Manitoba:
New Brunswick:
  • Next link will take you to another Web site Infirm Persons Act, amended in 2000 (sections 40-44): http://www.gnb.ca/0062/acts/acts/i-08.htm
  • Next link will take you to another Web site Consumer guide:
    www.legal-info-legale.nb.ca/showpub.asp
    ?id=35&langid=1#poa%20for%20personal%20care
Newfoundland and Labrador:
Northwest Territories:
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Nova Scotia:
Nunavut:
Ontario:
Prince Edward Island:
Quebec:
Saskatchewan:
Yukon:
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Appendix 3: Key informants interviewed

  1. Janet Arnold, Project Leader for the Calgary Health Region for the Respecting Choices® advance care planning initiative (AB).
  2. Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association
  3. Jeff Blackmer, Executive Director, Office of Ethics, Canadian Medical Association
  4. Carmelina Cimaglia, Psychogeriatric Resource Consultant, Royal Ottawa Hospital (ON)
  5. Judy Cutler, Co-Director of Government and Media Relations, Canadian Association of Retired Persons
  6. Dorothy Dawson, nurse and Board member, Saint John Regional Hospital (NB)
  7. Richard Elliott, Deputy Director, Canadian HIV/AIDS Legal Network (e-mail exchange)
  8. Louis-Marie Gagnon, Executive Director, Maison Plein Coeur, Montreal (QC)
  9. Leslie Gaudette, family caregiver and member of Surveillance Working Group, Canadian Strategy on Palliative and End-of-Life Care (BC)
  10. Thomas Gibson, family caregiver (ON)
  11. Bill Gleberson, Co-Director of Government and Media Relations, Canadian Association of Retired Persons
  12. Susan Graham-Walker, Executive Director, ALS Society of Ontario
  13. Sue Grant, Project Leader, Advance Care Planning, Fraser Health Authority (BC)
  14. Karen Henderson, Founder and President, Caregiver Network (ON)
  15. Marion Hall, Director, ALS Society of Ottawa-Carleton (ON)
  16. Nora Hammell, Director of Nursing Policy, Canadian Nurses Association
  17. Laura Hawryluck, Physician Leader, Ian Anderson Continuing Education Program in End-of-Life Care, Toronto (ON)
  18. David Henderson, palliative care physician, Colchester East Hants Hospice Palliative Care Program (NS)
  19. Sandy Johnson, Executive Director, Hospice Saint John and Sussex (NB)
  20. Sylvia Jurgutis, Renal Social Worker, Ottawa Hospital (ON)
  21. Suzanne Kendall, family caregiver, BC
  22. Nuala Kenny, Professor, Departments of Bioethics and Pediatrics, Dalhousie University, Halifax (NS) [the consultant attended two of Dr. Kenny's workshops on advance care planning during the course of research for this report]
  23. Heather Lambert, Occupational Therapist, Centre for Health Services and Policy Research, Queen's University, Kingston (ON)
  24. Joan Lesmond, Chief Operating Officer and Director of Professional Practice, Casey House Hospice, Toronto (ON)
  25. Linda Lysne, Executive Director, Canadian Caregiver Coalition
  26. Joan MacDonald, National Clinical Consultant, VON Canada
  27. Karen McEwen, Director of Professional Practice, Policy and Education, Pembroke Regional Hospital (ON)
  28. Beverlee McIntosh, Social Worker, Ottawa Rehabilitation Centre,ALS (ON)
  29. Sylvia McNeil, family caregiver (BC)-by e-mail
  30. Ken Monteith, lawyer and Executive Director, AIDS Community Care Montreal (QC)
  31. Cathy Mosher, Nephrology social worker, QEII Hospital, Halifax (NS)
  32. Paul Muirhead, lawyer, Williams McEnergy, Ottawa (ON)
  33. Filomena Nalewajek, Executive Director, Canuck Place Children's Hospice, Vancouver (BC)
  34. Barbara O'Connor, Executive Director, The Hospice at Maycourt, Ottawa (ON)
  35. Marie-Josée Paquin, Provincial Coordinator, Hospice Palliative Care Network and Project Manager, Medical Affairs and Community Oncology, Alberta Cancer Board (AB)
  36. Pierre Poirier, Executive Director, Paramedic Association of Canada
  37. Anita Pudlik, renal social worker, Credit Valley Hospital, Mississauga (ON)
  38. Shirley Pulkkinen, Renal social worker, Sault Area Hospital, Sault Ste Marie (ON)
  39. Michele Rigby, Social worker, Colchester East Hants Hospice Palliative Care Program (NS)
  40. Monique Rigole, Personal Directives specialist, Government of Alberta (AB)
  41. Esther Roberts, family caregiver (ON)
  42. Jerry Rothstein, Chair, Task Group on Volunteer Best Practices and Quality (preliminary discussion about volunteer role)
  43. Maria Rugg, Clinical Nurse Specialist, Palliative and Bereavement Care Program, Hospital for Sick Children, Toronto (ON)
  44. Joan Rush, lawyer, Vancouver (BC)
  45. Bonnie Schroeder, Project Manager, National Programs, VON Canada
  46. Lily Shatsky, Chair, Clinical Ethics Committee and Board member, Maimonides Hospital Geriatric Centre, Montreal (QC)
  47. Cathy Simpson, healthcare chaplain, Halifax (NS)
  48. Cheryl Smith, Palliative Care Coordinator, North Eastman Regional Health Authority (MB)
  49. Ann Soden, Lawyer, National Elder Law Section, Canadian Bar Association (overview discussion)
  50. Lorraine St Martin, Vancouver General Hospital, CKD Clinic (BC)
  51. Sarah Taber, Specialist, Canadian Council on Health Services Accreditation
  52. Judith Wahl, lawyer ands Executive Director, Advocacy Centre for the Elderly, Toronto (ON)
  53. Linda Watts, Supervisor, renal social work, Sault Ste Marie Hospital (ON)
  54. Bev Weeks, Board member, Canadian Association for Community Care; Director, Harvey Outreach for Seniors Incorporated (NB)
  55. Rhonda Wiebe, Researcher, Vulnerable Persons New Emerging Team, and Representative, Council of Canadians with Disabilities (MB)
  56. Bonnie Wood, Patient and Family Counsellor, Royal Columbian Hospital, New Westminster (BC)
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Appendix 4: Questionnaire for key informant interviews

  1. There is often confusion about the terminology used in advance care planning. In your experience, what you understand these terms to mean:
    1. Advance care planning
    2. Advance directive
    3. Living will (Testament biologique in Quebec)
    4. Substitute decision-maker or proxy
    5. Power of attorney for personal (or health) care
    6. Competence/incompetence or capacity/incapacity (i.e. to give consent to treatment)
  2. What terminology do you use most often?
  3. Does confusing terminology create barriers to effective advance care planning? How? Can you give examples?
  4. More generally, in your experience what are the challenges that care providers and consumers (clients, patients, families) face with respect to advance care planning?
  5. What successful experiences with advance care planning can you tell me about?
  6. To your knowledge, how often does the treatment or care actually received correspond to:
    • the patient's wishes?
    • the family's wishes?
    • the health care providers' professional judgement?
    • the needs of the health care facility?
  7. What other important points do you wish to raise that the questions may not have covered?
  8. Who else would you recommend to be a key informant?

Appendix 5: Resources

  1. Next link will take you to another Web site Advocacy Centre for the Elderly. www.advocacycentreelderly.org.
  2. ALS Society of Canada. Next link will take you to another Web site A Guide to ALS Patient Care for Primary Care Physicians. CD available from the ALS Society of Canada at www.als.ca.
  3. Ashpole, Barry and Associates Inc. Advance Care Planning - An Environmental Scan. Prepared for the Secretariat on Palliative and End-of-Life Care, Health Canada. 2005.
  4. Canadian Broadcasting Corporation. Next link will take you to another Web site Living Wills: FAQs. 2005: www.cbc.ca/news/background/wills/
  5. Canadian Council on Health Services Accreditation. CCHSA's Accreditation Program: Next link will take you to another Web site Glossary and Hospice Palliative and End-of-Life Care Standards. 2006. www.cchsa.ca
  6. Canadian Healthcare Association, Canadian Medical Association, Canadian Nurses Association and Catholic Health Association of Canada.
    1. Next link will take you to another Web site Joint Statement on Preventing and Resolving Ethical Conflicts Involving Health Care Providers and Persons Receiving Care. 1999. www.cma.ca
    2. Next link will take you to another Web site Joint Statement on Resuscitative Interventions (Update 1995) www.cma.ca
  7. Canadian Hospice Palliative Care Association:
    1. News releases and fact sheets for Next link will take you to another Web site National Hospice Palliative Care Week. Issued May 6, 2006. www.chpca.net/events/nhpc_week/2006/nhpcw_resources.htm
    2. Next link will take you to another Web site Definition of hospice palliative care: www.chpca.net/menu_items/faqs.htm#faq_def
  8. Canadian Medical Association. Next link will take you to another Web site CMA Code of Ethics (PDF version - 28 K). 2004. http://policybase.cma.ca/PolicyPDF/PD04-06.pdf
  9. Next link will take you to another Web site Canadian Nurses Association. www.cna-aiic.ca
    1. Policy Statement: Joint Statement on Advance Directives. 1994.
    2. Position Statement: End-of-Life Issues. 2000.
    3. Position Statement: Code of Ethics for Registered Nurses. 2002.
  10. Chambers-Evans J and Carnevale FA. The Dawning of Awareness: The Experience of Surrogate Decision Making at the End of Life. Journal of Clinical Ethics 2005; 16 (1): 28-45.
  11. Dalhousie University Health Law Institute - Next link will take you to another Web site End-of-Life Project Advance Directives resources. http://as01.ucis.dal.ca/dhli/cmp_advdirectives
  12. Fraser Health Authority (BC):
    1. Let's Talk - Resources for advance care planning. 2006. www.fraserhealth.ca/healthinfo/advancecareplanning
    2. Adult Guardianship and Personal Planning Instruments Legislative Review. Brief submitted to the British Columbia Ministry of the Attorney General. 2006.
  13. Gunderson Lutheran Medical Centre, La Crosse, Wisconson, USA. Next link will take you to another Web site Resources for the Respecting Choices® advance care planning program:
    www.gundluth.org/eolprograms
  14. Health Canada. Canadian Strategy on Palliative and End-of-Life Care. Reports of the March 2005 and March 2006 Advance care planning Forums.
  15. Heyland, DK et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ February 28, 2006; 174(5): .
  16. Ipsos-Reid. 2003. Telephone survey conducted for the Canadian Hospice Palliative Care Association and GlaxoSmithKline Inc.
  17. Lambert, HC et al. Advance Directive Use in Ontario Long-Term Care Facilities: A Policy Study. Centre for Health Services and Policy Research, Queen's University. Poster presentation. 2005.
  18. Ottawa Hospital (Ontario) Nephrology Advance Directives Work Group. Guide: Advance Care Planning. 2005.
  19. Next link will take you to another Web site Paramedic Association of Canada. www.paramedic.ca
  20. Rush, Joan R. Stillborn Autonomy: Why the Representation Agreement Act of British Columbia Fails as Advance Directive Legislation. Unpublished thesis for Master of Laws Degree, University of British Columbia. 2005. 262 pages.
  21. Statistics Canada. Population Projections for Canada, Provinces and Territories -2000-2006. Catalogue #91-520, page 124
  22. University of Manitoba Department of Continuing Medical Education. Next link will take you to another Web site Rural Physician's Orientation Guide for Practice in Manitoba. (PDF version) 4th edition, 2005: www.ornh.mb.ca/docs/RPGuide_4thedition.pdf
  23. University of Toronto. Ian Anderson Program in End-of-Life Care. Next link will take you to another Web site Module 4: End-of-Life Decision-Making. (PDF version - 184 K) 2000.
    www.cme.utoronto.ca/endoflife/Modules/
    End-of-Life%20Decision-Making%20Module.pdf
  24. Next link will take you to another Web site University of Toronto Joint Centre for Bioethics. Living Will: www.utoronto.ca/jcb/outreach/living_wills.htm
  25. Yarborough M. Deciding for Others at the End of Life: Storytelling and Moral Agency. Journal of Clinical Ethics 2006; 16 (2): 127-143.
  26. Provincial and territorial resources:
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