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OAA, increasingly Title III and IV have been used to make real differences for those needing long-term care. The AOA's current emphasis on Title II of the Act-that is, the mandate to coordinate federal agencies on behalf of older people-can also be seen in the spirit of working with Medicaid agencies, public health agencies, the Veterans Administration, HUD and others to make sure that the needs of the frail elderly who receive long-term care be met. At state and local levels, the Aging Network has also shown its readiness and ability to engage in this leadership and collaboration.
In the first decade or so of the OAA, Aging Network personnel were visible in advocating for the broader array of community long-term care services now available in many states. They argued that such services were necessary in order that seniors could live out their lives with as much dignity and meaning as possible, and as much as possible in the settings that they prefer. Now that the advocacy of the 1970s and 1980s have led to substantially increased (albeit uneven and imperfect) opportunities for older persons to receive long-term care in the community, the advocacy efforts of the Network have increasingly turned to refining and improving these efforts, and identifying gaps as well as duplications. Similarly, the coordination efforts in the Network have often turned to developing a full-blown case management system at local levels. I would argue that the advocacy and coordinating mandate of the Network are, at present, most needed in the long-term care area.
DIVERSITY ACROSS STATES AND NETWORK
As already stated, enormous diversity can be found in the way states have organized community long-term care services, their stage of long-term care development, and the extent to which the aging network agencies are involved in case management and long-term care. Therefore, it is inappropriate to mandate a single model of longterm care or require that AAAs have specific roles. On the other hand, the tremendous success of the Network in many states in becoming a focal point for well-organized,
geographically based long-term care efforts must be recognized at this point of
reauthorization of the Older American's Act.
Long-term care is an arena fraught with ethical dilemmas, invoking all three of the ethical principles that philosophers tend to use to organize their thinking about public policies. These principles are:
Autonomy, that is, the principle that mentally capable people should be able to direct their lives and make their own choices, as long as these choices do not interfere with the autonomy and well-being of others.
Beneficence, that is the principle that we should act so as to do good and not do harm
Justice, that is, the well-understood but hard-to-implement concept of fairness in distribution of rights, benefits, and responsibilities in society.
In the design and implementation of long-term care systems, Aging Network personnel and others are concerned with all these principles.
With regard to the principle of autonomy, the following issues arise: an appropriate informed consent process for case management; ways of ensuring that client autonomy is not violated in the careplanning process and that client choices for providers and site and type of service are respected; ways of balancing the autonomy rights of clients and those of family members; ways of permitting competent older people to take conscious risks with their safety in order to live their lives as they prefer, and ways of ensuring client confidentiality is respected and that information is not divulged without consent. Also, because autonomy requires a client who has the capacity for autonomous decision-making, an array of ethical issues arise in properly assessing what a client's decision-making capacity actually is, especially given the fluctuating capacities of many clients. Further, there are challenges in determining what decisions to make and what risks clients should be permitted to take if they are incapable of various types of decisions. The whole arena of advance directives, guardianship, conservatorship, and
adult protective services must be considered in relation to the problems of assuring
In terms of the principle of beneficence, Aging Network personnel are involved in assessing the values and preferences of older people and making sure that services maximize outcomes that clients think are good, a complicated endeavor in a heterogeneous society. Network personnel, in their advocacy roles, must also look carefully at the extent to which guardianship and conservatorship, adult abuse reporting, agency licensure and a host of other provisions truly serve the interests of the elderly long-term care user.
In terms of the principle of justice, Aging Network personnel are involved in determining what is fair and equitable in the treatment of one older client compared to another; in the treatment of clients vis-a-vis their family members; in the treatment of current clients vis-a-vis clients that might be on the waiting lists for service; and even in the treatment of provider agencies, whose livelihoods to some extent depend on the fair allocations made by case managers. Aging Network personnel have also been giving increasing consideration to fairness and justice in terms of paraprofessional caregiving personnel-largely poor and often minority women who work at low wages and receive inadequate benefits. In part, Network leaders are considering the ultimate fairness of the working conditions and remuneration of this group of workers (who will themselves come into old age without the cushion of savings). Simultaneously, at the level of service delivery, Network leaders are also considering what sorts of working conditions and situations are fair to the person who delivers hand-on care.
I am very pleased, Senator Adams, that the advocacy components of the OAA may be strengthened in the current reauthorization of the Older Americans Act. I see no particular conflict in Aging Network agencies serving as case managers and also fulfilling
an advocacy function. Indeed, it is through their active roles as case managers that AAAS and network providers have begun to articulate some of the vital ethical issues in long-term care. In Pennsylvania last spring, a group of AAAs sponsored a seminal conference on ethical issues in case management. In Wisconsin last week, the SUA conducted a 2-day training session, cosponsored by our Resource Center, which was attended by 500 people and which was entirely devoted to ethical issues and aging and long-term care. In Minnesota last year, the SUA presided over a process known as SAIL (Seniors Agenda for Independent Living), which gathered multiple inputs of older people and experts to determine ways to enhance the autonomy and dignity of seniors, especially the disabled. To these endeavors, the Aging Network brings an important ingredient that cannot be readily supplied by Centers on Bioethics, typically housed in Health Sciences complexes. This ingredient supplied by the OAA Network is its knowledge of the everyday issues that arise within families and that affect the daily lives of the elderly. In its advocacy, the Aging Network can go way beyond fixation with the important but limited questions of end-of-life treatments to considerations of autonomy, justice, and beneficence in the way ordinary services are allocated and delivered to
functionally impaired persons.
It is true that care coordination and case management has within it a tension between advocacy to serve a particular dient and resource allocation to serve a community of clients. However, this is not a reason for the Aging Network to avoid and to withdraw from the vital roles of case management. Rather it is a reason for Network personnel to give special attention to the ethical ramifications of its case management work, and to carefully consider all the case management procedures and content from an ethical perspective—including, informed consent, assessment (including assessment of values), care planning, confidentiality, contractual arrangements with agencies, and even the ethics of maintaining waiting lists for assessments. Proper safeguards are needed to avoid conflicts of interest among case managers or development of elaborate
bureaucratic procedures that lose sight of the goal of serving clients. Few AAAs are delivering services directly, so that the potential conflict between AAAs as case managers and as service providers is unlikely to occur. Case management, itself, is not a service. Like I&R, it is an administrative function. In situations where AAAs are contracting both case management and service provision to the same providers, it will be necessary to re-examine that strategy to avoid conflicts of interest, but there seems to me nothing inherent in the OHA to prevent vigorous advocacy and skilled case management to coexist in the Network
Our Minnesota Resource Center has recently completed interviews with 250 randomly selected publicly subsidized case managers from more than 50 programs in 10 states. All but 25 of the respondents were Aging Network personnel. The respondents identified many ethical issues that face them in their work, and they did so from their traditional perspective as advocates. Had they not been advocates, I doubt that they would have identified the issues so thoroughly and so well. As the one LTC Resource Center with ethics as part of its formal mission, we have been struck by the sensitivity of SUAS and AAAS to ethical themes, and their desire to develop case management approaches that enhance the independence of older people.
Thank you for inviting my testimony and, indirectly, for establishing National Long-Term Care Resource Centers to serve the Aging Network.