Annual Report 1998-99

The Provincial Health Ethics Network
Presented at PHEN Annual General Meeting
Red Deer, May 21, 1999

This proposal summarizes the major initiatives undertaken or continued, and challenges encountered, by the Provincial Health Ethics Network in its 1998-99 year of operations.

Initiatives

The educational and resource linkage endeavours outlined below are in relation to each segment of the Network's goals (see Introductory pamphlet and membership application).

Education

• Teaching Modules

  The PHEN offices continue to receive requests to facilitate module-format workshops on topics in health ethics. Network Coordinators and representatives facilitated a total of 47 modules, presentations and discussion forums in the 98-99 year. Audiences ranged from Regional Health Authority boards and administrative staff to continuing care centres, home care managers, health professional association members and the general public. The total number of workshops and forums conducted by PHEN since its inception now exceeds 200.

  The list of modules presently offered includes:

  1. Introduction to Health Care Ethics
  2. Approaches to/Frameworks for Ethical Decision-making
  3. Establishing and Strengthening Ethics Committees
  4. Ethics of Personal Directives
  5. End of Life Decision-making
  6. Ethics of Resource Allocation
  7. Ethics and Informed Consent
  8. Capacity for Adults and Children
  9. Introduction to Research Ethics
  10. Health Ethics in a Cross-Cultural Setting
  11. Ethics and the Protection of Persons in Care

• PHEN Annual General Meeting and Conference, May 8-9, 1998

  The 1998 Annual Conference of the Network was held in Calgary with the theme Strengthening the Moral Foundations of Health Care: The Role of Ethics Committees. Keynote speaker Dr. Tom Noseworthy, of the Faculty of Public Health Sciences at the University of Alberta, attracted a multidisciplinary audience and stirred a lively debate around the topic of Issues and Prospects for Canada's Health Care System. Other conference sessions addressed the role and need for ethics committees within health and health care, and provided the usual opportunity for PHEN members to turn the last word in the organization's name from a noun to a verb.

• Canadian Bioethics Society Annual Conference, October 28-30, 1999

  Over the past eight months, the Network has supported the work of, and played an active role in conjunction with, the John Dossetor Health Ethics Centre of the University of Alberta as well as St. Joseph's College Ethics Centre, in the administration and planning of the upcoming national meeting of the Canadian Bioethics Society. Hosting of the conference rotates between various regions of the country, with the 1999 session scheduled to be held in Edmonton. The conference will be preceded by a one-day workshop featuring Board members of the International Association of Bioethics. The theme of the conference will be Expanding the Boundaries of Health Ethics. PHEN will also be co-hosting, with the Capital Health Authority, a post-conference one-day workshop that will have a provincial/local focus and will be designed to bring these bioethics resources to Network members, other care providers and Albertans.

• PHEN User Fund

  As part of its mandate to build health ethics resources in the province, to make health ethics resources more accessible to rural parts of the province, to provide opportunities for linkage to bioethics personnel in various parts of the country and continent, and to ensure the continued expansion of a network of knowledgeable and informed individuals in the field, PHEN continued to support the training of care providers in health ethics through its User Fund. In the 1998-99 period, PHEN supported the further training of eight individuals at introductory and advanced levels. These individuals have been required to make a contribution to their local workplaces, committees or associations upon the completion of their training by sharing their experiences and knowledge gained.

• Membership

  Membership in PHEN, a registered society under the Societies Act, has been a cornerstone of connection between those interested and involved in health ethics in the province. Individual and institutional membership in the Network in the 1998 calendar year grew to over 500, its highest level since inception, indicating a growing awareness of and/or interest in, Network activities.

• Resource Directory

  The Health Ethics Resource Directory for Alberta, first compiled in 1995 as part of the feasibility study into the establishment of the Network, was updated and distributed to members in 1998 with a larger directory of individuals, committees and institutions in the province that are available to assist care providers and Albertans in accessing information.

• In Touch: Monthly Membership Bulletin

  In order to stimulate dialogue between members and provide updates on events, the Network offices initiated in 1998 a monthly two-page update for distribution to members. The format has been generally well-received.

• Health Ethics Today: Newsletter

  A joint publication with the John Dossetor Health Ethics Centre, Health Ethics Today provides incisive articles on timely issues in health ethics and is distributed to the members of JDHEC and PHEN, as well as to several thousand care providers in Alberta. Recent themes included compensation for individuals infected with Hep C and difficulties resolving tensions around substance abuse, or suspected abuse, by pregnant women. The two bodies have agreed to maintain the newsletter as their joint flagship publication with the goal of tri-annual publication.

• Web Site

  PHEN's web site, located at http://www.phen.ab.ca , was updated and revised in 1998. Additional information includes a sub-page - geared to both the general public and RHA educators - on ethical issues in Personal Directives; an internet version of the 1998 Health Ethics Resource Directory; an on-line directory of the PHEN Health Ethics Video Guide; a listing of clinical ethics committees and chairpersons in the province; all issues of In Touch and Health Ethics Today published to date; an index of health ethics web sites and internet resources elsewhere in the world; order forms for purchasing PHEN publications; and further information on, and on-line sign-up forms for, those wishing to become PHEN members.

• Media Relations

  Representatives of PHEN met with the editorial boards of the Calgary Herald and the Edmonton Journal in the Spring and Summer of 1998 to inform them of the existence of the Network as a link to facilitate connection with those interested, and with a background, in the area of health ethics. Connections were also made with most of Alberta's rural newspapers and several additional media outlets, most of whom expressed a willingness to use PHEN's resources to access individuals able to provide information and informed perspectives on topical health ethics issues.

• Ethics Consultation Link

  PHEN operates 1-800 lines from its Northern and Southern Alberta offices that continue to respond to inquiries and requests for information. While the Network is not designed to provide direct consultation services regarding ethically problematic situations, it continues to provide referrals to the most appropriate bodies (e.g. professional colleges/associations, ethics committees) and individuals, as well as providing written background information for those who seek, or could be assisted by it.

• Ethics Consultation Committees Support & Development

  One of the aims of the Network is to provide a stronger linkage between the clinical health ethics committees operating in various regions of the province. As part of this goal, the Network arranged a meeting of representatives from Alberta Regions and Boards in Edmonton on March 29, 1999. Topics discussed include accreditation requirements regarding ethics committees, the role of institutional and regional ethics committees in addressing clinical and administrative ethics issues, strategies to increase interaction and networking between committees, and information exchange on the status and nature of clinical ethics committees in the province.

• Values-based Frameworks for Public Consultation on Priorities in Health & Health Care

  Building on the recent emphasis on, acknowledgment of the need for, and challenges involved in, soliciting informed, reasoned and thoughtful public input on the values and directions that underlie health systems, PHEN has begun exploring the possibility of and need for developing expertise in explicit values-based decision-making models for public consultation. To date, the Calgary Foundation has expressed its interest and support by providing a grant of $16,000 towards PHEN's initial research and work in the area. The Network is also in discussions with other community foundations and a Regional Health Authority in exploring the possibility of collaborating on such a project.

Coordination

• Ethics Review for Community Research

  The Network is presently in discussions with representatives of the Alberta Heritage Foundation for Medical Research (AHFMR) regarding the possible transfer of administrative responsibility to PHEN of the Community Health Ethics Research Review Committee, an ethics review body for research protocols of investigators who do not have access to one of the several extant Research Ethics Boards in the Province. The system would be designed to complement the AHFMR's role in community health research through the SEARCH program (Swift Efficient Application of Research in Community Health).

• Network of Networks

  In an effort to strengthen its role as coordinator of discussions around health ethics, the Network hosted a meeting by teleconference of various health ethics networks across North America in October '98. Health Ethics Networks from Florida, Maryland, Vermont, California, Manitoba and Ontario took part or submitted information for sharing. The meeting revealed many similarities in the roles of and struggles faced by such organizations. Common goals of the Networks included providing resources to, and forums for interaction between, ethics committees, care providers and in some cases members of the general public. General challenges identified for such networks included human and material resources incommensurate with the demand for services, engaging physicians in activities, and achieving a balance between effecting change and maintaining neutrality as facilitators of discussion.

• Discussion Session on Health Information Protection Legislation

  In March 1999, the Network responded to a request to provide feedback on the ethical implications of pending health information legislation by coordinating a small group of individuals with a background in health ethics to meet with Alberta Health representatives. The meeting complemented previous contributions by PHEN representatives in supporting the work of the Alberta We//net Senior Reference Committee.

Dialogue

• Personal Directives Retrospective Sessions

  In conjunction with the Office of the Public Guardian, the Network sponsored seven forums to provide an opportunity for care providers and recipients to discuss ethical and practical issues raised by the proclamation of The Personal Directives Act. The forums were held in Medicine Hat, Calgary, Olds, Red Deer, Edmonton, St. Paul and Grande Prairie between November 27, 1998 and February 17, 1999. In total, approximately 200 individuals attended the sessions and exchanged concerns and comments around planning for care of the incapacitated.

• Joint Statement on Resolving Ethical Conflicts Between Providers and Recipients of Care

  On request from the Provincial Health Authorities of Alberta, the Network responded to a draft document entitled The Joint Statement on Resolving Ethical Conflicts Between Providers of Health Care and Persons Receiving Care by arranging open discussion forums to provide opportunity for dialogue and to solicit feedback from care providers to inform future drafts of the document. The discussion forums were held in Calgary and Edmonton in June 1998. Views and concerns expressed by the 125 session attendees were summarized by the PHEN office in the form of a discussion paper and submitted to the institutional authors of the document, including the Canadian Healthcare Association, the Canadian Nurses Association, Canadian Medical Association and the Catholic Healthcare Association of Canada.

  Challenges & Opportunities

  While the initial period of establishment and growth of the Network has met with considerable success, several challenges and opportunities have been identified that will need to be addressed in the coming years if the organization is to fulfill its larger vision. These include:

• Continuing to build PHEN's identity and profile in the Province

  As its services and structure become more widely known and accessed, PHEN can increasingly solidify its presence in Alberta's health scene as a valuable resource serving all Albertans. This will require time, credibility, and focused public relations and communications efforts.

• Ensuring the development and growth of PHEN

  Given the increasing focus on health issues in society, PHEN needs to pursue a strategy of growth and development to meet these emerging needs. This will be increasingly accomplished by partnering with and soliciting support from organizations that share or support the Network's vision and mandate.

• Meeting increasing demand for PHEN's services

  Increasing demands for PHEN's services place strain on its staff and resources. PHEN needs to continue to seek ways to meet demands through innovative approaches and allocate limited resources to those areas most closely aligned with its mission.

• Fostering Linkages With Like-Minded Organizations

  While some progress has been made in the past through joint initiatives and conferences, the Network should continue to foster linkages with professional bodies, government agencies and community groups that share and support its vision.

• Providing an Institutional Role Model for Collaboration in Health Ethics

  The position, structure and function of the Network, unique in Canada and North America, has been cited as a possible model for similar bodies in other provinces and jurisdictions. PHEN should continue to share and disseminate lessons learned from its challenges and successes, and support the expansion of both formal and informal health ethics networks.

• Providing Resources in the Area of Public Consultation

  Outcomes from the recent Health Summit have underscored the need for accountability and responsiveness to those whom the health system is meant to serve. Designing fair, effective and ethical means of soliciting public input is a significant challenge for any health system. The unique position and nature of PHEN may provide opportunities to play a greater role in this process.

• Networking

  While the organization has made strides in making ethics education and resources more available to care providers, it should seek ways to increase communication and informed dialogue amongst its members.

• Expanding the Base

  While the exit of a key historical figure, Dr. John Dossetor, former Vice-Chair and Director of PHEN, posed challenges to the organization, it also provided an opportunity to reflect on the first phase of the Network's growth over the past three years, to re-focus and prioritize its activities for the future, and to expand the base and network of individuals and institutions in the province with an interest in health ethics