Advance care planning: the Glossary project - Final report

Experience of advance care planning in Canada

An objective of this report is to go beyond terminology to begin a discovery of how Canadians in the health, social and legal sectors experience the process of advance care planning and of acting on advance directives. This section is based on information gathered from interviews with key informants in all three sectors.

Health care sector

Observations by key informants from the health sector cluster around nine main topics:

1. Developing advance directives: working with clients, patients and their families
2. Acting on advance directives in care and treatment: working with patients and their families
3. Challenges in assessing the capacity of the patient to give informed consent to treatment
4. Roles of members of the health care team
5. Levels of Care forms
6. The need for systems that support advance care planning and following advance directives
7. Paediatric advance care planning
8. The need for education and resources
9. Research and evaluation

Key informant observations on each of these topics are briefly summarized below.

1. Developing advance directives: working with clients, patients and their families

• Several informants stated that medical technology has outrun ethical decision making. We can now keep people alive longer and have raised expectations that medicine can "keep us alive forever - a miracle that just isn't there". This discourages some people from engaging in advance care planning which they may see as unnecessary because they do not expect to die.
• Some key informants thought that a barrier to discussion of advance care planning was the perception that many consumers not only fear illness and death, but that they may see death as a personal failure in a society and medical culture that emphasize "fighting" and "surviving" disease.
• Many informants stated that a written document is not the focus or the goal of advance care planning. They stressed the importance of the dialogue between the patient and family and, secondarily, among the patient, family and health care providers.
• Many health care providers state that they would choose a proxy directive for themselves but that they recognize the need of many patients without close family ties to have an instructional directive.
• Many informants stressed the need to include advance care planning as part of the continuum of care: "Introduce the topic of advance directives early in the disease trajectory so you don't end up later in the emergency room with nothing said or planned for."
• Some informants suggested that the family physician could raise the topic of advance care planning with relatively healthy adults during the annual physical examination as a way of normalizing the discussion.
• Several health care teams that have engaged in formal advance care planning programs report that patients and families are usually eager to engage in discussions about advance care planning if they have the support of a facilitator (nurse, social worker, volunteer - anyone with training) who can demystify terminology and help people begin to engage in reflection and discussion. One program reported that it took an average of 2.5 meetings of the patient and family with a facilitator in order for advance care planning to be successfully initiated.
• Some informants see a trend toward more patients coming into care who have advance directives but who have not had conversations with their family or physician about their wishes or values.
• Informants working in palliative care report a higher number of patients with advance directives than those in other types of care.
• Informants working in renal care tend to have extensive experience with advance care planning because of the need to discuss decisions with patients about initiation and discontinuation of dialysis (i.e. withholding and withdrawing treatment).
• Some informants spoke about advance care planning programs based on the Respecting Choices® program developed in Wisconsin. This program emphasizes the naming of a proxy and the expression of wishes; it is being piloted in British Columbia, Alberta and possibly other provinces.
• Desire for no resuscitation:
  • Some informants observed that there may be a self-selection among those preparing an advance directive: they may be largely those who do not wish resuscitation in the event of heart or respiratory failure.
  • Informants stated that there are few good educational resources about resuscitation and intubation to help consumers make an informed choice about stating a desire for resuscitation or not in their advance directive. Some informants thought that educational resources should inform without terrifying. They also thought that euphemisms such as "breathing machine" blurred reality and that communication should be more forthright and realistic.
  • A health care provider observed that patients of low socioeconomic status tend to choose all measures to prolong life whereas the more affluent tend to choose not to be resuscitated. The informant thought that this was because the life experience of people of lower social and economic status makes them more likely to feel that others want to take advantage of them or do away with them.
• Family dynamics:
  • Informants working in rural areas and in Atlantic Canada spoke about the situation of the elderly who have no immediate family who live in the province. The elderly may have had the expectation that their children would look after them, but the children are not available except during vacations and by telephone. In these cases, the proxies and other substitute decision makers must function at a distance.
  • A patient may refuse to name a proxy for fear of causing family conflict if one child or family member is chosen instead of another. Some persons choose multiple proxies in their advance directive in order to avoid hard feelings. In these cases, it is important to specify the roles of multiple proxies and to include a dispute resolution mechanism in the advance directive; if this is not done, the provisions in provincial/territorial legislation apply with respect to multiple proxies.

2. Acting on advance directives in care and treatment: working with patients and their families

• An informant stated the need for clear ethical guidelines in health care institutions because decisions to withhold or withdraw treatment involve judgements about standards of care, professional judgement and values. Without clear ethical guidelines, scarce resources could lead to pressure to withhold or withdraw treatment.
• Many informants stressed the importance of knowing the patient's goals when interpreting their wishes. For example, a patient may not want to be kept alive indefinitely by artificial means but they many want to live long enough for their children to arrive from other provinces.
• Informants with extensive experience with advance care planning have worked out ways to deal with conflict between any or all of the parties engaged in advance care planning. Informants report that in almost all cases where there is good will by all parties, conflicts can be resolved.
• Helping a patient to define their wishes involves an ongoing process of negotiation. This was emphasized by informants working in renal care. They stressed that there is not just one decision point as there may be in intensive care.
• Most informants thought that the gradual shift in health care toward a more patient-centered model of care has the support of most health care providers. Most felt that, where possible, the health care team did their best to respect patients' wishes where these were realistic. Several people gave the example of the patient having expressed the wish to die at home but the family admitting that they could not cope with providing this level of care at home, in which case the patient was kept in the hospital or long-term care facility.
• Concerns about people being coerced into choosing no resuscitation were not widespread. Practice appears to vary widely: while some informants noted that Do Not Resuscitate orders might be placed on an elderly patient's chart by a physician, other informants stated that the default decision in a health care facility could be resuscitation even if the patient is elderly and frail.
• Some informants noted that, in their experience, the wishes of the family may sometimes prevail over the patient's wishes with the result that the patient's life is prolonged for the benefit of the family. Some informants observed that health care staff may tend to "forget" a patient's wishes if the family speaks more strongly than the patient. As one informant said, "The patient dies but the family survives and we have to deal with the family."

3. Challenges in assessing the capacity of the patient to give informed consent to treatment

• Some informants stressed the need to assess capacity to give informed consent on an almost daily basis because of the changing health condition of the patient.
• One informant reported having to remind her staff often that the patient is capable of informed consent to treatment until proven otherwise.
• Some informants reported that families may assume that the patient is incapable in all areas of decision making whereas consent must be incident-based.
• Some informants expressed concern about whether consent was truly informed because, in their experience, the patient may not absorb information even when they seem to understand. Similarly, informants dealing with diseases such as ALS stated that new research shows that there may be cognitive impairment even though behaviour may appear normal; in these cases, determining if the patient is capable of informed consent can be difficult and emotionally fraught for health care providers and families.

4. Roles of members of the health care team

• Several health care providers noted that physicians often do not know how to initiate what may be an uncomfortable discussion about advance care planning or they may not have time for dialogue; nurses have a heavy work load and may not have time to talk with patients or may feel they will be out of their depth if the patient asks detailed medical questions. Many agreed that social workers have a privileged position because they are already engaged in discussion with patients about other matters and can start conversations about advance care planning. Others saw volunteers as playing an important role in initiating or supporting the dialogue because of their training in listening and communication.
• Many informants noted a reluctance by physicians to initiate discussions about advance care planning with their patients based on the concern that the patient may assume that the discussion means that their diagnosis or prognosis is worse than they have been told. The patient may fear that the discussion signals that death is approaching.
• Some informants thought that physicians were pushing for advance directives "because it makes it easier for them in the end".
• Several informants noted that physicians who have come to Canada from other countries may have more paternalistic or authoritarian attitudes toward patients than Canadian-trained doctors who have been exposed to the philosophy of patient-centered care and self-determination for patients. Informants noted that foreign-trained physicians often do not believe in advance directives and think that only the physician should decide. Informants noted, however, that these physicians are aware of the law concerning advance directives and consent to health care and will obey the law.
• The importance of communication within the interdisciplinary team came up often in the interviews as crucial to awareness of the patient's wishes and of their changing health status and to the mutual support and sharing of expertise within the team.
• Some informants pointed out the challenge for other staff and families when staff members in the same facility have different opinions on whether or not to respect the wishes of the patient and family. In these cases, the family finds itself in constant negotiation with staff members.
• Several informants commented on the role of paramedic personnel with respect to instructional directives requesting no resuscitation and Do Not Resuscitate orders signed by physicians. When paramedic personnel are called on to transport patients to hospital from home or long-term care facilities, in most cases they are legally obligated to attempt resuscitation except when they are shown appropriate documentation (a Do Not Resuscitate order signed by a physician or an instructional directive in jurisdictions where it is recognized in legislation). Informants emphasized the need to ensure that the advance directive or DNR order is easily found so that paramedic personnel can consult it.

5. Levels of Care forms

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; comfort measures only; specified treatments; or all necessary interventions to prolong life. Some long-term care facilities require that these forms be completed as a condition of admission. The legal status of these forms is dubious.

• Informants from several provinces mentioned Levels of Care forms as being required by most long-term care facilities. Some thought that they were first developed by physicians who were concerned about lawsuits and legal liability for their treatment decisions. Most informants cautioned that there is a distinction between a Levels of Care form and an advance directive and that the danger exists that facilities and patients will mistakenly assume that completion of a Levels of Care form is equivalent to having a valid proxy and/or instructional directive.
• According to informants, Levels of Care forms are often not reviewed and revisited on a regular basis except if the resident's or patient's family applies pressure to do this.
• One informant cited research showing that most residents in long-term care do not remember signing a Level of Care form and do not remember their choice of care level.
• Some informants stated that, regardless of the uncertain legal status of these forms, most people will sign them if they are required by the long-term care facility because they fear having no other place to live.
• Some informants pointed out a source of confusion regarding levels of care designation when patients are transferred between facilities because a Level One in a hospital may be equivalent to a Level Three at a long-term care facility in the same city.

6. The need for systems that support advance care planning and following advance directives

• Many informants stated the vital importance of systems that support patients, families and health care providers to engage in dialogue about advance care planning and to ensure that advance directives are consulted. Based on their experience, informants suggested that the health care and social service systems need to devote financial resources and staff/volunteer time to advance care planning dialogue with patients and families. They also pointed out that effective mechanisms must be in place such as workbooks for patients and families interested in preparing advance directives, periodic reviews of the advance care plan with all concerned, easily visible ways of attaching advance directives to a patient's chart, and so on. Many informants stated that systems must be established so that preparation of advance directives and consulting them become part of normal health care practice.
• Several informants stated that systemic challenges present the biggest barriers to staff awareness of a patient's advance directive. Many informants observed that advance directive or care wishes are often not seen by staff for a variety of reasons, including lack of staff time to consult the patient's record.
• Some informants pointed out the importance of mechanisms to ensure that an advance directive follows the patient. If the family physician has the advance directive on file in his/her office, it is unlikely to be seen when the patient is admitted to hospital. In most urban areas in Canada, the family physician will not necessarily see the patient in hospital.
• In general, informants noted a lack of effective documentation processes across the continuum of care with respect to advance directives. According to many informants, there are serious problems with transfer of information and awareness of an advance directive when a patient is transferred from home to a care facility, between care facilities, or to a different unit within the same facility. The different centres of responsibility often do not communicate with each other.
• Several informants spoke about systems that are used, or could be used, to ensure that health care providers are aware of a patient's advance directive, including:
  • electronic health records and smart cards
  • colour-coded medic-alert type of bracelet (These have been tried in the United States. There is some evidence that they may lead to stigmatization of patients with respect to their care choices)
  • a colour-coded transparent document holder prominently displayed in the patient's home and on the front of their medical record in hospital (e.g. the Greensleeves folder used by British Columbia's Fraser Health Authority).
  • hospital admission procedure that requires asking all patients if they have an advance directive. If so, a copy of the advance directive is placed on their chart and its presence is flagged by a visual reminder. Informants observed that physicians may have to be reminded to look for the advance directive in the chart.

7. Paediatric advance care planning

In Canadian jurisdictions, the minimum age for making an advance directive ranges from 16 to 19, although younger minors can give informed consent to treatment in some jurisdictions. Most children in care, including paediatric palliative care, cannot make an advance directive but informants pointed out that they can participate in planning and decision making. Close to 6000 children die each year in Canada, mostly in intensive care. The informants who contributed the following observations have experience in paediatric palliative care.

• Informants stated that the child or adolescent should have the same rights as adults to information and involvement in discussions about their care; the informants emphasized that the information must be suited to the child's stage of development and expression.
• Continuous communication and decision making involving the child and family are crucial. In paediatric palliative care, there is time for this communication to take place because death is rarely sudden.
• Palliative care staff talk to children of all ages about their illness and treatment, about "what we can do and what we can't do".
• Parents often try to protect their children from knowledge of the severity of their illness, but children usually know and want to communicate about it.
• Children are often more ready to talk about death than their parents. Staff observe that children are often wiser than adults and more able to face the truth about illness and death. The child may have to guide the parents through the process. As one informant said, "The illness has fast-tracked learning that it takes adults years to achieve because the children have to learn about things that most of us don't".
• An informant stated that she could not think of a single case where a child did not want to understand what was happening to them.
• Paediatric palliative care facilities use a variety of therapies to help children express their feelings and desires, including play, music and art therapy.
• Some families agree to a Do Not Resuscitate order for their child near the end of life.
• Informants stated the need for a paediatric advance care planning program for children and families.

8. The need for education and resources

Informants stated that there is widespread interest among both the public and health care professionals in learning more about advance care planning and for resources and programs to support both consumers and health care providers.

9. Research and evaluation

Informants expressed the need for research and evaluation in advance care planning, particularly with respect to:

• Evaluation of processes of transfer of information across the continuum of care and between care facilities: how well do advance directives follow the patient throughout the system?
• Evaluation tools for performance measures: How closely does the care received match the patient's wishes expressed in an advance directive or by other means. Are end-of-life care choices respected?

Implications - health care sector

• Across Canada, there are pockets of strong expertise and experience in advance care planning and other areas with weak knowledge. Ways of sharing experience and knowledge could be helpful to those in all jurisdictions.
• In order for advance care planning to be initiated and acted on, systems must be in place to support and sustain the process.
  • Patients, families and health care providers need encouragement, support and tools to help them engage in discussion and preparation of advance directives. Trained facilitators and user-friendly resources have proved valuable.
  • The onus for making health care providers aware of an advance directive still rests largely with the patient, family or proxy, although some jurisdictions have provisions in legislation for registering advance directives or having them attached to the patient's medical record. Systems are needed to ensure that all health care providers are aware of advance directives and that the advance directive follows the patient between care settings.
• There is a need for advance care planning education and training for health professionals, especially focusing on interdisciplinary practice and education because of the team nature of health care. Advance care planning might be an appropriate case study for education aimed at training health care providers to work in interdisciplinary teams.
• More research is needed into the use of Levels of Care forms in long-term care facilities and hospitals, particularly because their legal status is doubtful and because many consumers and health care providers mistakenly assume that the Levels of Care form constitutes a valid advance directive.
• Worthwhile research could be conducted into the influence of social determinants of health on advance care planning.^[4]
• Consideration should be given to developing a program for advance care planning for paediatric care.

Social sector

Information gathered from social workers was included in the previous section because the social workers interviewed all work in front-line health care settings. The information in this section is based on interviews with voluntary sector organizations advocating for or supporting those with specific diseases and interviews with family caregivers and volunteers. When key informants from the health sector spoke as consumers about their own advance care planning, their observations were included in this section. To a large extent, the distinction between the health and social sectors is arbitrary because advance care planning (in the context of this report) usually concerns health care.

Observations by key informants in the social sector cluster around five main topics:

1. Preparing and acting on an advance directive: consumer perspectives
2. Capacity to give informed consent to treatment
3. The influence of religion on advance care planning
4. Special concerns of the disability community
5. Resources, education and public awareness

Key informant observations on each of these topics are briefly summarized below.

1. Preparing and acting on an advance directive: consumer perspectives

• Family caregiver informants reported that their experience in caring for a critically ill patient made them more likely to do their own advance directive. Some reported that they now encourage their children to start talking about advance care planning while they are healthy, instead of waiting for a stroke or an accident, when it may be too late to communicate about wishes.
• Family caregivers stressed the need for ongoing discussion and revision of care goals as the disease progresses.
• Several respondents noted the beneficial effect on family bereavement of a positive experience with advance directives and the relieving of guilt because "We respected his/her wishes and we did all we could".
• Consumers who had prepared their advance directives well in advance of severe illness and who had discussed their wishes often with their families reported a good experience with having the advance directive respected by family members and health care providers.
• Some informants noted that it can be fairly simple to record specific instructions in an advance directive if you are living with a specific disease process and you know the outcomes of treatment; otherwise it can be difficult.
• Families who have not been able to discuss wishes with the patient can have difficulty in acting as proxies or substitute decision makers and can feel that the burden of choice about treatment is too heavy. In these cases, they may devolve entire responsibility for decision making to the health care provider (usually the physician).
• A health care provider commented on consumer perceptions that advance care planning is something they can put off thinking about. This informant stated that the slogan Talk to your doctor could be used to raise public awareness: "We don't all need Viagra, but we will all need an advance directive. Think about it while you're healthy."
• Informants reported that generational and gender factors influence advance care planning: older people are often not accustomed to talking about care or asking questions when they don't understand things. This can make it difficult to initiate a conversation about advance care planning. Women reported that men are not prone to open up the subject of advance care planning. The attitude they perceived was we don't talk about that.
• The growing role of the funeral industry in advance care planning was noted by several informants. They reported that funeral directors increasingly encourage people to prepare advance directives and wills when they do their funeral planning. One senior, however, stated that all of her friends had pre-planned and paid for their funerals but that none had an advance directive.
• The cost of a lawyer's services to prepare an advance directive is prohibitive for many consumers. Many informants thought that the services of a lawyer are often not needed in advance care planning and that a facilitator of some kind would be more helpful but they cautioned that most people do not have access to programs that offer the services of a facilitator.
• Speaking as consumers, many health care professionals said they would not choose cardiopulmonary resuscitation for themselves when expressing their wishes in an advance directive. A frequent joke was the possibility of having DNR tattooed on their chest.

2. Capacity to give informed consent to treatment

Some family caregivers spoke of the difficulty of determining the capacity of the patient to make informed decisions about care and treatment. A disease may involve cognitive impairment which is not obvious, leaving the patient capable in some areas of daily living, but unable to give informed consent to treatment based on understanding of information. This leaves family members, and sometimes health care providers, with often agonizing decisions and uncertainties about communicating with the patient and feeling sure that the patient's consent is truly informed. Family members reported walking a fine line between respecting the autonomy of the patient and acting in his/her best interests.

3. The influence of religion on advance care planning

• Several informants reported that religious officials of some faiths and denominations insist that members of their faith community ask for all measures to prolong life. A few informants said that their conversations with patients indicated that the patient may go along with something that is sanctioned by their faith community even though it may not be in line with their personal beliefs.
• Some informants mentioned a statement by Pope John Paul II about the need to offer feeding tubes, following his experience of treatment when critically ill. These informants reported that the Pope's statement sometimes influenced the treatment wishes of patients despite the advice or professional judgement of their physician.

4. Special concerns of the disability community

The disability community has strong concerns about advance care planning and advance directives because of the episodic nature of severe health crises and the danger that the person may not be resuscitated when they are capable of recovery. They are concerned about being assessed as incapable of giving informed consent to treatment because they cannot always communicate easily with health care providers.

Those living with disabilities continually fight against stigma and discrimination based on the judgments of non-disabled people (and care providers) that the lives of the disabled may not be worth living. As a result, those living with disabilities are advocates of documents that state I want to be kept alive and helped to recover. There is a fear, based on some experience, of having a Do Not Resuscitate order placed on their chart without their knowledge or consent (as is a physician's legal right, although the Canadian Medical Association Code of Ethics advises physicians to Respect the intentions of an incompetent patient as they were expressed (e.g. through a valid advance directive or proxy designation) before the patient became incompetent.).^[5]

5. Resources, education and public awareness

Key informants seldom mentioned the many Canadian websites that offer reliable processes and forms for advance care planning (e.g. provincial consumer guides). Many informants said that people often do not know where to find a user-friendly, affordable way to engage in advance care planning. Several informants spoke of the need for simple tools to help people prepare an advance directive and some suggested that a national website or information clearinghouse be established for consumers and health care providers.

Implications: social sector

• Disease-specific voluntary organizations could develop advance directive tools and resources specific to their diseases and situations because the trajectories of chronic and/or terminal illnesses vary. This would help patients to express care wishes in their advance directive which are tailored to their needs.
• The advance care planning needs of the disability community and of those living with chronic, long-term conditions are different from the needs of those living with critical or terminal illness. The diversity of needs is a possible subject area for further research.
• There is a need to raise consumer and professional awareness of advance care planning in a way that normalizes the process as part of health care and personal planning.
• A national website with user-friendly resources for consumers and professionals or an information clearinghouse would be valuable resources for advance care planning.

Legal sector

This section is based on interviews with lawyers and those in the health and social sectors who commented on advance care planning legislation or the law. Observations by key informants in the legal sector cluster around seven main topics:

1. The difficulty of obtaining pan-Canadian consensus on advance care planning terminology or standardized legislation
2. The central issue of informed consent to treatment
3. The debate over proxy versus instructional directives
4. Legal practice and consumer access to legal advice
5. Legislation
6. The need for dialogue involving the health, legal and social sectors, including consumers
7. The need to educate lawyers about advance care planning

Key informant observations on each of these topics are briefly summarized below.

1. The difficulty of obtaining pan-Canadian consensus on advance care planning terminology or standardized legislation

Some key informants expressed scepticism that it would be possible to achieve pan-Canadian consensus on terminology or legislative provisions because health care falls under provincial/territorial jurisdiction and current political trends favour more, rather than less, divergence.

2. The central issue of informed consent to treatment

There is concern by lawyers that those involved in advance care planning, particularly in the health and social sectors, fail to grasp the importance of the central issue of informed consent to treatment, which is the ultimate purpose of an advance directive, whether the consent is given by a proxy or via the person's wishes expressed in an instructional directive.

3. The debate over proxy versus instructional directives

An important difference of opinion exists within the legal and health sectors in particular over whether provincial/territorial legislation should allow proxy directives only or both instructional and proxy directives. It should be noted that even in jurisdictions where only proxy directives are recognized in legislation, the patient's wishes must still be taken into account if they are known.

Resolving the debate over proxy versus instructional directives is beyond the scope of this report. The main arguments put forward by key informants are summarized below.

In favour of proxy directives only:

• A proxy directive is flexible and responsive to actual reality because your proxy knows your values. It is almost impossible to create an effective instructional directive because you would have to predict the future and know what your wishes would be if you became critically ill. Your wishes would probably change as your health condition changed. What would happen if you forgot to update your wishes? Your intimate others and health care providers might be legally bound by outdated wishes. In any case, your values and recent wishes can be expressed to your proxy who will use them as guidance in giving consent to treatment.
• Proxy directives encourage meaningful dialogue with your proxy and family.
• Some physicians find it easier to deal with a written instructional directive instead of dealing with a real person (your proxy). A proxy directive will ensure that your next of kin are consulted by the physician if you lose capacity to give informed consent.
• Instructional directives are hard to interpret and follow. They may use vague terms such as "no heroic measures" or the wishes expressed may be unrealistic.
• People who do not have good relations with their family can appoint a proxy who can stand up to the family; otherwise, the family may take over as substitute decision makers.
• Many health care providers may be treating you. They may all have different interpretations of your instructional directive. Your proxy is the only constant in your care; your proxy can be the advocate who asks that your values and wishes be respected.
• An instructional directive is weaker than a proxy directive or a combination of instructional and proxy directive (where both are recognized in legislation). Without a proxy, you are at the mercy of the system or a conflicted family.

In favour of recognizing instructional directives in legislation:

• Some persons have no family, or no family whom they want to involve in their care. The person may want privacy with respect to their wishes. An instructional directive allows them to have their wishes respected without reference to a substitute decision maker.
• Persons are entitled to choice, autonomy and self-determination. This is a Charter right. Persons should be able to have their wishes respected without the intervention of a proxy or substitute decision maker.
• Seniors want the right to make their own choices and therefore should be able to express their wishes, including wishes that may request no resuscitation in the event of witnessed sudden death (cardiac or respiratory arrest).

Another comment on instructional directives from a key informant:

The informant thought that a statement of values would be more useful as an instructional directive than a prescriptive list of dos and don'ts with respect to treatment choices because wishes can change as a person's health status changes. If the written instructional directive no longer reflect the patient's wishes, the patient may no longer be capable of changing the directive. A statement of values, however, should stand the test of time and changed circumstances.

4. Legal practice and consumer access to legal advice

• Key informants from the health and social sectors have de-emphasized the development of legal documents involving the services of a lawyer. Some informants have stated that it is preferable not to have a legal document because this may be constraining in some cases.
• Key informants who are lawyers have mostly stressed that the process of reflection and communication between the patient and family is as important as the production of a document.
• Lawyers who work in health law observe that physicians may not seek out the proxy named in an advance directive and may instead talk to whichever family member is present.
• Many informants reported that lawyers routinely ask clients about preparing an advance health care directive (usually a proxy directive) when they prepare a will or a power of attorney for financial matters.
• Access to legal services for preparing an advance directive:
  • Some informants consider that many consumers cannot afford legal fees
  • Low literacy or language difficulties experienced by consumers may make it difficult for them to understand what the lawyer is saying
  • People living in rural and remote areas have difficulty in getting access to a lawyer.

5. Legislation

A few key informants expressed the need for provincial/territorial legislation that is specific to advance care planning, in addition to existing legislation governing proxy directives which may have been put in place to protect the rights of those living with long-term disabilities.

6. The need for dialogue involving the health, legal and social sectors, including consumers

While some informants stated that the most important key to understanding advance directives is the legislation and the law, other informants stressed the need for understanding advance directives as the result of a dialogue involving the health, legal and social sectors, including consumers, because legislation and the law are developed and evolve as a result of social consensus. These informants saw the evolution of legislation and the law about advance care planning as a long-term interactive process involving all of society.

7. The need to educate lawyers about advance care planning

• Many key informants from the health sector stressed the need for education about advance care planning for lawyers. The informants stated that lawyers often give their clients inappropriate advice when preparing an advance directive that contains wishes for treatment, often based on the lawyer's own perception of what he/she would want in terms of treatment. These informants considered that lawyers do not know enough about medical treatment to advise clients about treatment wishes and one stated that lawyers shouldn't try to be doctors. Many informants suggested that a lawyer should advise the client to talk to their family physician before defining treatment wishes.
• Examples given by key informants of the lack of expertise or sensitivity on the part of some lawyers included:
  • A husband and wife asked their lawyer to draw up their instructional directives. The wife wanted to be kept alive by all possible means and the husband wanted no resuscitation. The lawyer chastised the wife for her selfishness.
  • An elderly patient was admitted to intensive care with an advance directive prepared by his lawyer stating that he did not wish a brain transplant, among other things.
  • A patient came into care with three documents prepared by his lawyer: an instructional directive, a proxy directive and an application for guardianship. The patient's legal bill was close to $5,000.

Implications: legal sector

• Mechanisms are needed to foster ongoing dialogue about advance care planning among lawyers (legislators), policy makers, health care providers and consumers.
• Education and training in advance care planning are needed for legal professionals.