Personal Directives: A Retrospective on Year One

Summary of Sessions held November 1998 - February 1999

Purpose

The Office of the Public Guardian and the Provincial Health Ethics Network jointly hosted seven informal discussion sessions marking the first anniversary of the Personal Directives Act, proclaimed in Alberta on December 1, 1997. Held in seven separate areas of the province, the sessions were open to all interested personal care providers, administrators, organizational representatives, and members of the public. The primary purpose of the sessions was to hear from care providers and other Albertans experienced in matters related to personal directives and familiar with associated concerns and difficulties. These facilitated forums stimulated dialogue about the effect the legislation had on the provision of care generally and the ethical issues related to the provision of service for those who lack capacity, or are at risk of loss of capacity, specifically. While a formal review of the personal directives legislation has been undertaken by the Office of the Public Guardian, these sessions were another means of obtaining feedback from stakeholders.

Introduction

An overview of the administration of the Personal Directives Act in its first year was provided at the beginning of each session, the details of which are summarized here.

The Government of Alberta established an Interdepartmental Committee composed of the departments of Family & Social Services, Health, Justice and Community Development, to facilitate the implementation of the Personal Directives Act and to monitor its effectiveness over the two years following proclamation. Still in existence, the Interdepartmental Committee's role is to develop strategies to facilitate education and awareness, oversee the implementation, monitoring and evaluation of the Personal Directives Act, and act as a means of reporting findings to respective Ministers. The Interdepartmental Committee established two sub-committees: one to prepare and implement an education/awareness campaign, the other to coordinate the monitoring and evaluation of the implementation of the Personal Directives Act. The Monitoring and Evaluation Sub-Committee engaged RPM Planning Associates Limited to undertake the evaluation which will extend into the year 2000. The formal review of the legislation has involved surveying a random sample of the public, interviewing stakeholders such as makers of personal directives, agents, lawyers, service providers and related organizations. The review will address strengths and weaknesses of the Personal Directives Act, difficulties experienced with implementation of personal directives and key indicators of the effectiveness of the Act.

The Office of the Public Guardian has three Personal Directives Specialists across the province who provide general information sessions to the public, deliver workshops on writing a personal directive, and provide assistance to individuals who wish to prepare a personal directive. The Public Guardian will act as the substitute decision-maker for an individual if named as an agent in a personal directive. The Public Guardian also has the responsibility of acting as a "contact of last resort" when emergency medical services have been provided in some circumstances, and when service providers are faced with problem circumstances.

During the first year, the Office of the Public Guardian provided 300 information sessions to various groups across the province. Information booklets and brochures were distributed at no cost during the first six months following proclamation. A toll-free Personal Directives Information Line was established (310-0000; 427-7945) and manned for the initial six months to answer questions from the public and distribute the information booklets. After six months, an electronic call processor directs callers to the Queen's Printer Bookstore for materials and to each Regional Office of the Public Guardian for information or assistance with personal directives. For the eleven month period from December 1, 1997 to October 31, 1998 a total of 5,463 phone calls were handled through the Personal Directives Information Line.

Summary of Feedback & Comments

What follows is a summary of feedback received from the seven sessions co-hosted by the Office of the Public Guardian and the Provincial Health Ethics Network. The views contained herein are not necessarily those of the Office of the Public Guardian or the Provincial Health Ethics Network. This discussion paper reflects key comments made or concerns raised by the participants in response to three specific questions posed by the facilitators. Every effort has been made to remain true to the context in which a statement was given during the sessions.

I - To what challenges have the use of personal directives given rise?

1. What is a Personal Directive? Discussion group participants were sometimes unclear that the terms "personal directive", "advance directive" and "living will" were interchangeable, though the specific content and nature of the documents vary depending on the jurisdiction. Some felt that there is lack of detailed policy, procedure and protocol for dealing with personal directives. Some respondents were uncomfortable with new agent roles associated with personal directives being perceived as different than those associated with the legal concepts of guardianship and enduring power of attorney. Some sentiment revealed a mistrust of the concept of personal directives when it is seen as a means of encouraging euthanasia or of saving the government money in health care. A possible tension between the Personal Directives Act and the Mental Health Act was indicated and the need for more guidelines and clarification between these two pieces of legislation was suggested.
2. When should a Personal Directive be written and referred to? A number of participants were concerned about asking a patient for a personal directive during a crisis situation or before surgery and therefore causing additional stress for patients and families.
   
   Institutional admission policies on personal directives appeared to be inconsistent and in some cases ambiguous. Upon being questioned on admission to a hospital about having a personal directive, some patients apparently confuse the notion with that of guardianship or enduring power of attorney and become fearful and concerned about the reason for the question. This is sometimes exacerbated when dealing with mentally ill or challenged patients. Some of the institutions that endeavored to ask patients about personal directives upon admission were not always able to fulfill this duty as a result of time constraints and insufficient personnel. In continuing care settings, difficulties sometimes arose in making clear the distinctions between levels of care forms and personal directives. Participants sometimes perceived these difficulties as creating additional burdens and responsibilities for staff.
   
3. What should the content of a personal directive be? Concerns raised about information contained in personal directives included those arising from vague statements or instructions, suggesting a lack of understanding of relevant medical procedures. Some participants felt that personal directives tend to be acceptable when they refer to generalities of care but that they are not appropriate for indicating very specific instructions. Cases were cited in which the personal directives were lengthy and complex enough that the makers themselves may not have fully appreciated the implications of the instructions provided. Such circumstances made it difficult for the care providers to interpret the instructions. Variances in inter-regional or inter-provincial forms and policies also contributed to interpretation difficulties. Service providers were, therefore, sometimes obliged to make difficult decisions of interpretation.
   
4. Is there a standard personal directive form? What resources are available for assistance in writing a personal directive? Participants posed a large number of questions regarding the logistics of using personal directives. These included questions regarding: where to access help in writing a directive; whether it is the responsibility of service providers to assist makers in the writing of a directive; where information booklets can be obtained; how to choose an agent; what support The Office of the Public Guardian provides in times of crisis; whether lawyers should be included in the writing process; and how to respond to requests for care or service that may not be available?
   
5. Questions of competence. In the absence of universally accepted methods for determining competency, some service providers felt uncomfortable with the role of ensuring that a patient/resident continues to have, or to lack, competency. Mental health representatives voiced concerns about whether a patient may write their own directive in cases of fluctuating competency. Questions also arose regarding how the force of a personal directive is determined to have lapsed in cases where the maker has regained capacity.
   
6. Does the patient provide informed consent in the process of making a personal directive? Some participants expressed concern that some individuals may be reluctant to prepare personal directives because of the complexity of articulating values and having an agent accountable for decisions. Other relevant personal issues sometimes make it unclear if a directive was written voluntarily.
   
7. Where are personal directives kept and how are they accessed? Service providers were not always alerted to the existence of a personal directive or to its location, resulting in difficulties in obtaining a copy of the information for the service provider's records. Concern was raised with regard to multiple copies of a person's directive and not being certain that the document is the most current or that it has not been revoked. Questions were raised about the validity of "personal directives" in place before the proclamation of the Personal Directives Act.
   
8. Other players.
   
   Family Members: Several respondents felt that there was insufficient awareness of the fact that family members do not have legal authority to make decisions for loved ones unless they have been appointed as an agent or guardian. Individuals may be hesitant to prepare a personal directive because they do not want to burden family members or loved ones. Family members, it was noted, are not always named as agents. Once named, however, some agents were unclear about their role, duties, and responsibilities. In particular, agents were occasionally unaware of what is contained in the personal directive, when guardianship is required, how to put a directive into effect, or how to follow specific instructions.
   
   Lawyers: The role of legal counsel in preparing a personal directive is not sufficiently clear to the public. Some respondents felt that lawyers tend to be reluctant about discussing private "medical matters" with clients and that they have not been sufficiently well informed or educated about personal directives.
   
   Physicians, Nurses, Psychiatrists, Social Workers and other Caregivers: It was noted that care providers are required to administer personal directives but have not yet been sufficiently trained on how to perform that task. Discussion indicated that few caregivers have dealt with people who have drawn up directives. Some care providers admitted being tenuous about their responsibilities in carrying out personal directives, for example in the case of attempted suicide, and their potential liability in such situations. Questions were raised about the infringement of personal directives on medical decision making authority.
   
9. Public Awareness. Participants almost unanimously indicated that the public is not well informed about personal directives. Discussion ensued regarding who is responsible for educating the public, and service providers, in this matter. Information and resources on personal directives seem hard to access.

II - What impact, if any, has the introduction of personal directives had on the provision of personal services and care?

Discussion indicated that the introduction of personal directives has had both beneficial and deleterious effects on the delivery of health care.

If they are well-informed, care givers find health care matters can be significantly simplified with the use of directives. Personal directives that are well prepared and clear, and in which an agent understands his or her role, relieves much stress for the families of patients. Because personal directives may now be part of the conversation around potentially difficult healthcare scenarios, the manner in which health care is discussed in those families who are aware of the legislation, has changed. The opportunity for greater communication and the discussion of wishes and values increases the patient's control over his or her life. Decision making is simplified by the removal of common, day-to-day decisions from the Courts and agents/families have some legal authority to make decisions based on their loved one's instructions.

At the same time, some care providers are confused and wary about being involved in cases with personal directives. First, the personal directive process is demanding on physicians

and staff, as it takes time to educate those involved, especially the large number of front-line workers. It is also time consuming to find persons capable of assisting individuals with writing effective personal directives. Second, though the introduction of personal directives was intended to improve communication between care providers, patients, and families, conversations about levels of care can be made more confusing by the complexities of personal directives. There is general unease, as there will likely always be, in caring and making decisions for those who are incompetent. A third major tension expressed was the legal ramifications of providing services to someone with a directive, and the extent to which, and circumstances under which, care providers expose themselves to potential legal action in such cases. Fourth, service providers expressed concern that health services risk being compromised or halted when either personal directive information is not available, a patient must be transferred from one provider to another, or the agent is not available, unaware of the directive's contents, or unable or unwilling to make complex decisions.

III - What changes to the way in which personal directives are administered or used might be suggested to the Office of the Public Guardian and the Regional Health Authorities?

1. Provide More Education of health care workers and front line staff, the legal and financial community and the general public. Have integrated question and answer sessions with representatives from various disciplines. The law community should be clear to the public that a lawyer is not required for making a personal directive. Educate young people and healthy seniors so that they are aware and can plan for unfortunate circumstances. Target seniors groups, drop-in centres, churches, and introduce the concept in high schools and universities. Try to provide information on emergencies and personal directives in St. John Ambulance manuals.
   
2. Provide More Information, including kits and resources, and at no cost. Videos need to be developed as some people do not learn well through print media. More clearly identify resource personnel available to assist individuals in writing personal directives and inform service providers of these personnel. Perhaps Declaration of Incapacity forms could be included in the Choosing Now for the Future documents. There should be more publicity around naming the Office of the Public Guardian as an agent. The government should not charge for information booklets on writing a directive.
   
3. Advocate for Advance Preparation by encouraging people to have discussions before emergencies arise and before admission to institutions. Perhaps physicians can suggest to patients at their annual checkup that they make a personal directive if they have not already done so, and that they revisit their directive on a regular basis for revision if necessary. Encourage the appointing of one, primary agent as a personal directive requirement, with it being advisable to have an alternate agent as well. Agents should know their responsibilities and have similar beliefs and morals as the maker. Alberta Health should provide billable time for discussing personal directives with clients.
   
4. Provide More Guidelines and clarification between the Mental Health Act and the Personal Directives Act and specifics contained therein, especially with regard to Sections 13 and 16 and questions of incompetence. A way of confirming that personal directive makers are competent at the time of writing and that there is provision to reverse a declaration of incompetence were suggested. A liability protection clause should be included to protect service providers acting in emergency situations.
   
5. Maintain Simplicity in the composition of personal directives by having user-friendly forms that do not require seeking additional outside assistance. Perhaps people could be led through a process on a computer or indicate choices on a form with a checkmark, although with a checklist people may not give much thought to the process. Even a blank "form" is suggested that only contains information to include, so that there is some consistency from a health care provider point of view and yet it can be specific to an individual's situation. An organ donor card could be added to the personal directives forms as an attachment.
   
6. Make it Easier for service providers to access personal directives. The existence of a personal directive could be noted on a driver's license, a wallet card, or a bracelet. The idea of a central registry, where personal directives are stored and easily verified by service providers, should be explored. It is recommended that people be required to share a personal directive with the institution where the care is provided. Policy also needs to be clear regarding honoring personal directives from outside of Alberta.
   
7. Promote Publicity and media coverage regarding personal directives to prevent the first exposure to them being at times of crisis.

Other Comments/Suggestions from the Plenary Discussions

• The issue of personal directives is part of a social change in health care. It indicates the desire of individuals to make decisions for themselves and direct the course of their care.
• Public education should identify the personal directive as a continually evolving document that is updated regularly.
• The focus should be on viewing personal directives as "enabling legislation" and on the process of dialogue and information sharing, rather than on the content of a directive.