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Broda
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| Response
to Long Term Care Policy Advisory Committee Final Report Submitted January 2000
Introduction The Provincial Health Ethics Network, in conjunction with sixteen institutional partners1, hosted two facilitated discussion sessions on the subject of the November 1999 Long Term Care Policy Advisory Committee Final Report: Healthy Aging, New Directions For Care. The discussion sessions were held in Calgary and Edmonton on December 17, 1999 with a combined total of 57 representatives of various regional health authorities, extended care facilities and seniors' homes. The sessions focused specifically on Recommendation 46 of the Final Report - Take steps to explore ethical issues. The purpose of the sessions was: (1) To provide an opportunity for those with a particular interest in long term care ethics issues to engage in dialogue around means of systematically addressing these, and (2) to reflect on the recommendations made in the Final Report for the purpose of providing the feedback summarized in this document, to Alberta Health and Wellness. The discussion sessions were focused through four guiding questions, as listed below in italics, followed by an overview of participant responses to each question. The following is not intended to be a position paper and does not necessarily express the institutional opinion of the Provincial Health Ethics Network or any of its long term care or RHA partners.
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| Discussion Questions and Responses
1) What general feedback do you have in response to Recommendation 46 of the Long Term Care Policy Advisory Committee Final Report? |
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The inclusion of a section in the Report on ethical issues
was applauded and appreciated. |
Participants were pleased that a recommendation pertaining to ethical issues in long-term care had been included in the Report. This was seen as a vital and important step towards recognizing the long-standing need to more effectively deal with the complex and difficult ethical issues to which long term care gives rise. |
Many
felt that the wording of the Recommendation was too weak |
In
relation to many of the Report's other recommendations, the wording
of Recommendation 46 was seen to be weaker than justified.
Several
participants suggested that the Recommendation be altered from "take steps to explore ethical issues" to "take
steps to address ethical issues", underscoring the need
to take definitive action. This reflected a general concern that
the Recommendation's
four sub-points may be sufficiently broad in scope and vague
in
description to be conveniently overlooked in the future. The
groups looked forward to seeing more detailed and definitive
descriptions
of how these recommendations might be carried out.
The four sub-recommendations appeared to some to be somewhat disparate suggestions regarding long term care that had subsequently been linked to a general heading (Recommendation 46) by the common thread of ethics, rather than being a set of coherent means by which to fulfill the recommendation to "take steps to explore ethical issues". |
Recommendation 46 was felt
to be both important and urgent. |
Nevertheless, there was clear support for the general thrust of the Recommendation to explore ethical issues, a unanimity about its importance and urgency, and a particularly strong enthusiasm for the establishment of a multidisciplinary provincial ethics forum, though only if appropriately resourced and structured. |
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| 2) If you agree with the four goals suggested in this Recommendation, what strategies can you suggest to achieve them? | |
Education regarding health ethics issues, including but
not limited to personal directives, was thought to be crucial |
Session
attendees voiced the unequivocal sentiment that one of the keys
to properly addressing ethical issues arising in long term care
settings (which, they stressed, rightly included a wide range
of age groups) and for the elderly was through on-going education.
Thus, while there was support for the recommendation to disseminate
information regarding personal directives more widely, this was
seen to properly be only one component of a much larger need
to
expose health administrators, policy decision-makers, residents/patients/clients,
families, loved ones, and members of the public in both urban
and rural areas to thoughtful dialogue and training in ethical
decision-making and values clarification. The recommendation
to
provide information on Personal Directives should, it was suggested,
be broadly expanded to include education regarding ethical issues
related to guardianship, trusteeship, competency, resource allocation,
and decision-making about care and treatment options near the
end of life, amongst others. It was felt that such educational
initiatives should be targeted, through innovative means, to
all
age groups and across a variety of professional disciplines,
including those involved in the legal system.
Participants felt strongly that published information such as the booklets available on the subject of Personal Directives through the Queen's Printer, should be made more widely available, and should not be cost-prohibitive as was presently thought to be the case. |
A properly structured provincial forum to conduct analysis
and provide recommendations on long term care ethics issues
would
be a valuable resource. |
There
was significant support for the recommended initiative of a multidisciplinary
provincial forum to explore and communicate policy advice on
long-term
care ethics issues. Such a forum was seen as being a potentially
important resource, but not a replacement for, local and regional
bodies such as ethics committees, in confronting and exploring
sensitive health ethics topics.
Considerable concern was voiced about the composition, structure, and function that such a body would assume. A multidisciplinary nature, involving individuals of varying roles (caregivers, care recipients, guardians, families, health professionals), from all sectors (health, ethics, and finance) and from different levels (grassroots to department heads) was thought to be essential. It was also considered important that the forum be inclusive of rural representation, formal, clearly accountable, and on going rather than ad hoc. While there were varying opinions regarding its mandate, most felt that it should provide thoroughly considered support and recommendations to local and regional decision-makers on clinical and administrative ethical issues, standards and policy in long term care. Many suggested that its services also be made available to government for prospective review of pressing health policy issues with significant ethical implications. Such a role could not be effectively carried out unless there was both a fair degree of autonomy from government and sufficient resources to support and legitimize its activities. |
Long term care payment mechanisms should be reviewed from
an ethics perspective, perhaps by the provincial ethics
forum. |
The sub-recommendation that current payment mechanisms and subsidies be reviewed to ensure that they conform to stated values raised considerable discussion and debate about the economics and ethics of long term care funding. Many participants expressed a fear that this portion of the recommendation was "loaded" -- that it concealed a significant shift in approach to the funding of long term care in Alberta that had not been sufficiently examined from the perspective of the ethical principles of fairness, equity and respect for individuals. While there was no consensus in these discussions regarding how to structure such payments, it was clear that almost all participants felt that some process of systematically reviewing long term care payment systems from an ethics perspective was direly needed. Many felt that the multidisciplinary provincial body suggested in Recommendation 46 and discussed above would be an ideal forum to host such a discussion and analysis. The application of an ethical decision-making framework was thought to be a potentially valuable exercise in demonstrating the value of such a multidisciplinary provincial ethics forum. |
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| 3) What structures and processes might be put into place to better address ethical issues relevant to seniors' health and long term care centres? | |
Ethics
committees should be adequately supported to meet unique local
needs |
In addition to those discussed above, it was suggested that an additional means of "taking steps to explore ethical issues" would be to provide greater support for local and regional ethics committees in Alberta, both for site-based and community care. These ethics committees presently respond to local and specific ethics questions arising from the delivery of long term care, and in the future could work closely with, and be guided by, the multidisciplinary provincial forum recommended in the Report. While the Provincial Health Ethics Network is able to provide support to establish these bodies, there are insufficient resources at the regional level to support the committees' activities on an on-going basis. Properly supported local ethics committees, regional ethics councils and a provincial multidisciplinary ethics forum, working closely with the Provincial Health Ethics Network, could achieve substantial progress, it was felt, in addressing and raising awareness of ethical issues in long term care. |
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| 4) How can the Provincial Health Ethics Network (PHEN) provide support to the process of discussion, analysis and decision making around seniors' health and long term care ethical issues? | |
The Provincial Health Ethics
Network should continue providing its ethics educational offerings. |
Session
attendees suggested that the Provincial Health Ethics Network
should continue to coordinate regional and provincial ethics
forums,
act as a liaison between and support for ethics committees, and
offer educational programs. Given the high priority accorded
these
tasks, participants felt it important to ensure that the Network
have sufficient resources to carry them out.
The role of the Network in relation to a possible multidisciplinary provincial ethics forum was discussed in some detail. Participants recognized that the mandate of such a forum, focused as it would be on communicating positions and recommendations, may not fall within the general facilitative and educational role of the Network. It was proposed that there may be some role for the Network in coordinating or supporting the work of the forum. It was not clear however, how this could be feasibly structured. Participants thanked the Network and its partners for hosting the session, as well as the Long Term Care Policy Advisory Committee for their important work, and were appreciative of the opportunity to discuss and provide feedback on such important policy issues. |
1 Partners included: 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. |
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The Committee recommends that:
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*Excerpted
from The Long Term Care Policy Advisory Committee Final Report:
Healthy Aging, New Directions For Care, November 1999 |