Annual Report 1999-2000 & Business Plan 2000-01

PHEN's comprehensive set of multimedia teaching modules, tailored to the needs of each particular group, continues to be popular. The modules provide an opportunity for a wide range of people to explore, discuss and analyze ethical issues with the intention of using learned approaches to decision-making in their particular professions. The Network has now delivered or facilitated in excess of 275 modules, presentations and discussion forums in its short history. Audiences vary from Regional Health Authority boards and administrative staff to continuing care centres, home care managers, health professional association members and the general public.

The Network's primary and most popular networking and educational initiative continues to be its Annual Spring Conference. This year's theme, When Values Collide Between Health Care Providers and Recipients attracted a total of 250 participants to its one-day session in Red Deer. Four distinguished Canadian speakers in the field, Steven Lewis, Paddy Rodney, Alister Browne and Ted Keyserlingk, along with several local bioethicists, provided thoughtful analysis regarding value conflicts over treatment options, the cost of complementary therapies , the issuing of do-not-resuscitate orders, respecting individual autonomy in the community setting, provision of medication, and the use of artificial nutrition and hydration. Feedback received from evaluations was very positive, and demonstrated the demand and need for more such opportunities for discussion of divisive ethics issues.

The Network 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 national meeting of the Canadian Bioethics Society. Hosting of the conference rotates between various regions of the country, with the 1999 session held in Edmonton. The conference was preceded by a one day workshop featuring Board members of the International Association of Bioethics. The theme of the conference was Expanding the Boundaries of Health Ethics. The conference boasted over registered 300 delegates and equal number of attendees at a special free public evening lecture.

Canadian Bioethics Society Post-Conference:

Ethics of Allocating Resources, October 31, 1999

In conjunction with the Capital Health Authority, PHEN co-hosted a post-conference one-day workshop immediately after the national meeting, with a provincial/local focus. The theme of the workshop was the allocation of scarce health resources. Over 150 participants were in attendance and were provided an opportunity to reflect on the comments of four plenary speakers before engaging in discussion regarding a particular case study from actual experience. Again, feedback received was positive and encouraging.

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 bioethics personnel through its User Fund. In the 1999-00 period, PHEN supported the further training of eight individuals at introductory and advanced levels of Health Ethics. 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.

In conjunction with the Palliative Care Association of Alberta and Grant MacEwan Community College, the Network sponsored a conference in March 2000 to address the difficult issues arising from care for the dying. Speakers included various local clinicians, care providers and ethicists addressing topics including the ethics of sedation at the end of life, the ethics of complementary therapies, ethical issues arising from relentless suffering, moral dimensions of dying at home, withdrawal of care from terminally ill children and requests for hastened death at the end of life. The conference attendance was at capacity, with 190 registrants from across the province.

In response to repeated requests from its membership for programs that will meet the health ethics educational needs of those in rural areas with limited accessibility to the resources available in Calgary and Edmonton, the Network has begun work to initiate the coordination of a distance education course in health ethics for health care professionals and members of ethics committees throughout Alberta. The course will be delivered through video and internet, and will engage top bioethicists from across Canada in preparing learning modules for the course. At present, efforts have been launched to raise start-up funds for the project from various private, including corporate, sources. If successful, the Network hopes to launch the project in 2001. This will be the first distance education course of its depth and scope in the country.

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 more exhaustive directory of individuals, committees and institutions in the province that are available to assist care providers and Albertans in accessing information. In 1999, the directory has been kept updated on the Network's website in lieu of reprinting hard copies of the document. Feedback received indicates that the directory has been a helpful tool for connecting individuals. Its continual updating will remain an important function of the Network office.

In order to maintain greater contact with the membership and provide an alternate vehicle for discussion of ideas, PHEN continued publishing in 1999 a monthly two-page update for distribution to members. The dual purpose of the periodical is to stimulate dialogue by showcasing the writing/thoughts of a PHEN member, as well as to keep members abreast of Network and provincial ethics activities. The format has proved popular and will continue to be supported by the Network offices. Topics addressed in 1999 articles included the Winnipeg case of Helene and Andrew Sawatzky, the ethics of providing baby formula in children's hospitals, ethnocultural differences in use of personal directives, the need for ethics review of research, and ethical issues regarding promoting the determinants of health.

A joint publication with the John Dossetor Health Ethics Centre (JDHEC), Health Ethics Today provides incisive articles in health ethics and is distributed to the members of JDHEC and PHEN, as well as to several thousand care providers in Alberta. Past themes included compensation for individuals infected with Hepatitis 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. Topics for 1999 centered on the notion of 'normalcy' in medicine, and the ethical implications of the concept of 'futile' or 'non-beneficial' care.

PHEN's web site, located at http://www.phen.ab.ca, was continually updated and revised in 1999. An exhaustive page, geared to both the general public and RHA educators, on ethical issues in Personal Directives was substantially improved and updated; an internet version of the Alberta Health Ethics Resource Directory has been expanded and made easier to access; a section on various consultation sessions held by PHEN was included; a listing of clinical ethics committees and chairpersons in the province has been kept up-to-date; the complete list of In Touch and Health Ethics Today periodicals published to date is now available on-line; and suggestions and links to other bioethics sites and resources has been improved.

PHEN has traditionally provided strong support for both fledgling and established ethics committees throughout the province. This support has continued with several requests from RHAs for workshops regarding establishing or strengthening the efficiency and effectiveness of these committees. In their advisory role to clinicians and other care providers, these committees provide a neutral forum for thinking about and exploring issues that arise in the delivery of care which clinicians which may not normally have the opportunity to systematically explore during the course of their practice. The committees act only in a supportive capacity, and do not, as general rule, make decisions or pass judgement on the actions of care providers. PHEN staff also continue to serve on various health ethics committees within their geographical areas, providing additional, on-going support and ethics consultation services where possible.

PHEN operates 1-800 lines from its Northern and Southern Alberta offices that have responded to hundreds of inquiries and requests for information to date. While the Network is not designed to provide direct consultation services regarding ethical 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, additional material.

One of the aims of the Network is to provide a stronger linkage between the health ethics consultation committees operating in various institutions and regions of the province. Following up on a meeting of representatives from all 19 Alberta Regions and Boards held in Edmonton in March 1999, the Network has maintained close contact with the various committees in operation, and is planning a second such meeting to be held in conjunction with its Spring 2000 conference in Red Deer. Topics to be 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.

Building on the recent emphasis on, acknowledgement 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 exploration into the possibility of and need for developing expertise in explicit values-based decision-making models for public consultation has met with much support. To date, $42,000 has been raised for Phase I of the project. Supporters include the Calgary, Edmonton, Red Deer and Medicine Hat Community Foundations and the Clifford E. Lee Foundation. The first phase of the project, scheduled to be launched in April 2000, will involve preliminary research, literature reviews and groundwork to explore various options for further phases of the project.

In the 1999 year, the Network provided professional, ethicist and administrative support to the Community Health Research Ethics Review Committee (CHRERC). The CHRERC was established by the Alberta Heritage Foundation for Medical Research (AHFMR), with support from PHEN, to conduct ethics review of research projects which do not fall under the jurisdiction of any existing research ethics boards in the province. Its primary aim has been to support research taking place in and with communities, particularly outside of urban areas, and to educate researchers regarding the protection of human research subjects against harm.

The Network has since reached an agreement with the AHFMR to continue to play a monitoring role for the CHRERC through the appointment of a PHEN representative to the Committee, as well to provide it with information and support on an as-needed basis regarding ethics issues and events.

In September 1999, the Network responded to a request to provide feedback on the implications for research ethics committees of draft health information legislation. As the legislation requires ethics review of certain proposals to use health information, the inclusion of such a mandate for ethics committees has substantial implications for the members of the committees and their supporting organizations. The meeting complemented previous contributions by PHEN representatives in supporting the work of the alberta we//net Senior Reference Committee.

Continuing in the tradition of sessions held in previous years to discuss the ethical implications of the Personal Directives Act and other health policy documents, the Network conducted sessions in Edmonton and Calgary in December 1999 to discuss ethical issues arising in the provision of long term care, specifically in the context of the Final Report of the Alberta Long Term Care Review. Recommendation 46 of the Report - Take Steps to Explore Ethical Issues - was seen to be an important step forward in addressing the many ethical issues that arise, and are often not addressed, in continuing care. The discussion session was held in conjunction several RHAs and key organizations in the field of continuing care in Alberta, including the Alberta Long Term Care Association, Bethany Care Society, Beverly Centre, Carewest, Caritas, Capital Care, Capital Health Ethics Coordinating Council, Good Samaritan Society, St. Mary's Health Care Centre, and the Calgary, Capital, Chinook, Crossroads, David Thompson, Headwaters and Palliser Health Regions. A summary report was compiled from the discussions arising at the sessions, and submitted to Alberta Health and Wellness for appropriate consideration.

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. While an increasing number of health care providers are aware of PHEN's activities and mandate, much work remains to be done in this area. The Network must balance a desire to create greater awareness with a realistic sense of its abilities, given the resources available, to respond to the demands that such awareness generates.

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 its vision and mandate. The recent support of several Alberta community foundations/agencies such as the Calgary Community Foundation and Clifford E. Lee Foundation speaks to the potential for creating more such partnerships in the future.

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.

While some progress has been made in the past through joint initiatives and conferences, the Network needs to continue to foster its linkages with professional bodies (including particularly the College of Physicians and Surgeons of Alberta, the Alberta Association of Registered Nurses, and similar groups), government agencies, RHAs, and community groups that share and support its vision.

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. The Provincial Health Ethics Network 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 from which health care providers, administrators and all Albertans can ultimately benefit.

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 the on-going process of public consultation.