Patients who receive care from community health agencies such as home care agencies present some special ethical challenges to clinicians and administrators by virtue of the setting for care and the decision-making capacity of the patient. Administrators need to consider their ethical obligations and responsibilities just as clinicians do. Administrators make decisions and develop policies that have consequences for the well-being of both patients and employees. Selected ethical concepts, principles, and values are described that can assist administrators in the reflection that is required for making decisions and developing ethically supportable policies in situations where there is often disagreement and no ready-made answers exist.
Introduction
Administrators practice in a healthcare scene of turbulence and rapid change. They find themselves in the private, public, or non-profit sectors of health care, managed care arrangements, integrated service networks, or community agencies. Administration and management of patient care in community or community-based agencies is the focus of this article. Community health agencies fall on a spectrum from government or publicly funded agencies (more traditional public health nursing agencies), to community-based agencies that have both public and private sources of funding, to for-profit home care agencies.
The daily reality of healthcare administrators is fraught with ethical aspects that often go unexamined because they are a part of the ordinary and routine delivery of health care. According to John Worthley (1997), the ethical dimension of professional practice begins when the presence and decisions of professionals affect other people and their welfare. Worthley, an author, educator, and public service professional, claims that administrators in healthcare settings wield power and influence over clinicians and other managers. The exercise of this power and influence impacts on the organization, the delivery of services, and ultimately the care of patients. He goes further to say that the very fabric of the ethical life of administrators is fraught with conflicting values and competing moral claims such as respecting persons, preventing harm, and assuring organizational survival. Ethics and the exercise of power are entwined then in the consequences of daily administrative decision making and policy development. Nurse administrators and managers, key players in responding to ethical complexities of patient care in organizational settings, must be sensitive to the place of both ethics and power in their practice environments.
The ethical environment of an organization, the "ethical climate" as discussed in Silva's (1998) article, influences whether and how ethical issues are identified and the types of responses that are developed for resolution or management. It was not too long ago that nurse managers in a teaching/research hospital told this author that they felt it was important to convey to new staff nurses that it was safe to raise their ethical concerns. The underlying question was whether or not it was "really" safe to talk about ethical concerns in this organization. They worried that talk about ethical concerns might be perceived as some form of "whistleblowing" with negative consequences for nurses and nursing. A more extreme example comes from a student who completed a health administration residency in a large urban hospital. The CEO conveyed a clear message to all employees that ethical issues were not be be discussed in his organization.
These situations would probably not occur today given the ethics requirements of accreditation organizations such as the Joint Commission for Accreditation of Healthcare Organizations (JCAHO, 1995). Mandates include development of ethical standards for home care agencies who seek accreditation. Administrators, in concert with clinicians, must establish effective processes and mechanisms that will help them respond to their responsibilities as "moral agents" of the organization who are influential in the creation of an organizational ethic and climate.
Both administrators and clinicians must now pay attention to care of both individuals and populations at risk as healthcare organizations restructure and reorganize their funding and delivery mechanisms, usually under the rubric of managed care. Both groups of healthcare professionals find themselves in the midst of value conflicts and cost pressures in their daily work. Examples include conflicts in their professional responsibilities between the expert delivery of healthcare services and stewardship of resources; social responsibilities to provide services in a fair or just way; legal responsibilities to provide services procedurally with attention to due process, and personal responsibility to do this all honestly (Worthley, 1997, p. 114).
Patients who receive care in community settings such as homes or clinics present some special challenges for healthcare administrators and policy development. The challenges differ primarily in degree or emphasis from those in institutional settings such as hospitals and nursing homes. Institutionalized patients find themselves in environments in which there are established norms and expectations for patients that generally involve restricted freedom of choice and more control over patient behavior. The patient situation described in this article has ethical dimensions that differ then in degree and emphasis from those occasions when the patient finds herself hospitalized. They include degree of direct supervision over activities of daily living, assurance of safety, and the role of other community members in provision of care and monitoring when she is at home.
Community-based Case Study
The scenario described here is not uncommon in community-based agencies across the United States. Administrators and case managers are challenged by ethical, legal, economic, political, and policy concerns as they seek to manage difficult patient care situations in which there are no ready made answers. This case study is drawn from a real-life situation that occurred over several years with many ethical implications for administrative decision making and policy development.
Mrs. R, an 85-year-old former teacher, has been diagnosed with Alzheimer's Disease and is determined to stay in her own home. She has always been very independent and has lived alone since her husband died ten years ago. Assisted living options are not acceptable to her. She is still active in her church and drives her car around town. She does her own grocery shopping but is having increasing difficulty with paying bills, meal preparation, and personal hygiene. Her neighbors and other church members have been very helpful with errands, invitations to meals, lawn maintenance, etc. She has no family members in town. Relatives keep in touch with the situation by phone and occasional visits. The closest family member is an 88-year-old widowed sister who lives 200 miles away, is unable to travel, and worries constantly about Mrs. R.
Over the past few years, home care and nursing agencies have provided Mrs. R with care and supervision after several hospitalizations for surgery and falls. Neighbors have called her minister and 911 on several occasions over the years.
Services have included meals-on-wheels after assessment that revealed inadequate nutrition, concerns for safety, supervision of medication for hypertension, and assistance with light housekeeping and shopping.
More recently, the agency responsible for protection of vulnerable adults has been involved for assessment purposes requested by the home care agency providing services. She has sometimes refused to allow home care agency personnel to enter her house and has accused them of stealing items that have little or no monetary value. Mrs. R is now one point from failing a recently administered mental status assessment test that was used to assist in determining whether she is "safe" to stay in her home alone. Family members were told by the case manager that agency policy requires discontinuation of services when unable to assure that Mrs. R is safe in her home over a 24-hour time period.
Administrative Ethical Issues
The patient's case manager and the home care agency administrator have discussed Mrs. R's situation several times. Agency assessments reveal an increasingly marginal situation in terms of patient (and community) well-being - not a unique situation in delivery of community-based services. They are also concerned about the welfare of neighbors who "watch out" for Mrs. R and are feeling increasingly burdened. They have told agency workers that they are worried about her safety at home, her ability to care for herself, and her driving. While agency policy requires that services be discontinued, there is a compelling ethic in nursing and healthcare that says patients should not be abandoned. The nurse who serves as case manager in this situation holds the position that it is wrong for the agency to simply discontinue services even if this is agency policy. She considers herself to be a patient advocate and calls on the principle of fidelity with its implied promise to patients who are receiving services that they will not be abandoned. This is a situation in which reasonable people disagree and a situation in which the ethical and "legal" or administrative perspectives are not automatically congruent.
Ethical concerns raised by the administrator and case manager include concerns for the "rights" and obligations of patients, healthcare professionals, and the agency; adequacy of agency policies and processes for dealing with this and similar situations; the potential consequences to the agency, the patient, and the community of continuing or not continuing to provide services under marginal circumstances; fair allocation of finite agency and nursing resources; and the meaning of caring for patients in this and similar situations.
While the issue of adequate agency policies and processes is largely an empirical question, it also has ethical dimensions because of resources needed for support. Each of the concerns, identified by the administrator, reflects ethical values, principles and perspectives that may conflict. These conflicts require explicit attention in order to develop ethically reasoned ways of managing situations in which individuals do disagree about the right action to take. Because this is a common type of situation in many community-based nursing and home care agencies, taking the time to work through the ethical concerns will provide a model for the practice of preventive ethics. There is also the potential for human energy and financial cost savings and decision making that facilitates a more suuportive and ethical practice environment.
Preventive ethics is the anticipation of situations in which ethical concerns may, and have, become "ethical crises". The practice of preventive ethics involves development of more pro-active ways of managing ethically-charged situations so that they do not escalate into debilitating crises that consume scarce resources such as the time, energy, and energy of personnel and from which nothing is learned for future use.
While there are several ways that the agency administrator might respond, including doing nothing and just letting things take their course, she decides that the agency has an obligation to be more pro-active. She will not choose the passive option to do nothing because the identified administrative concerns require attention and action. She decides to consider each of the concerns more reflectively with the case manager in terms of their ethical values and underpinnings.
The discussion that follows is not exhaustive of all the ethical issues that might be raised but suggestive of the kind of reflection and administrative reasoning that pays explicit attention to the ethical aspects of decision making, policy development and the concerns raised by the agency administrator and case manager in their discussions.
Ethical Concepts and Values: Links with Administrative Concerns
The first issue concerns the "rights" and obligations of patients receiving services, healthcare professionals, other employees, and the agency providing the services. The administrator realizes that rights of individuals are generally considered to be a paramount value in our society. Less emphasis is placed on individual responsibilities and obligations as community members. Both rights and obligations arise within the relationships of a human community (Davis, Aroskar, Liaschenko & Drought, 1997), in this instance, a community-based agency setting. The agency may be viewed as a "community" based on a general concept of community as a group of individuals in an organizational entity or system linked by common interests and goals (Aroskar, 1995).
Rights serve an important protective function in our lives. They protect our individual liberty by serving as protection against oppression by government and other groups, unequal treatment, and unwarranted invasion of privacy as examples (Beauchamp & Childress, 1994). One example in health care is the development of bills of rights for patients that emphasize protection of patient rights to make their own treatment and related healthcare decisions. Legally such rights are supported in the doctrine of informed consent. Patient bills of rights also have legal standing in some, not all, states. Individual rights are supported ethically by the principle of respect for autonomy as self-determination and by the broader principle of respect for persons.
The ethical principle of respect for persons has two dimensions. The first expresses respect for individual autonomy and self-determination. The second dimension expresses respect for each individual as a member of the human community, a community in which all members are interdependent and interconnected. Claims of individual rights do not take adequate account of this second dimension especially when such claims are considered by patients and even health professionals to be absolute. This seemed to be the case with Mrs. R who wished to remain in her own home regardless of the consequences to herself or others. Claims of individual patient rights then become a source of struggle and frustration for all the involved parties. They present value conflicts for administrators and clinicians who also hold the powerful value of protecting patients from harm, that is, the ethical principle of non-maleficence. Both respect for persons and non-maleficence are key ethical principles in the American Nurses Association (ANA) Code for Nurses (1985). The ANA Code states publicly the ethical obligations of nurses and serves as a general guide for ethical practice in nursing.
Healthcare executives also have a code of ethics that serves a similar purpose (American College of Healthcare Executives, 1993). This code of ethics emphasizes responsibilities of healthcare executives to their profession, to patients or others served, to employees, to the organization, to the community and society. Administrators in community-based agencies may wish to consult both of these professional codes and any others relevant to the goals of the agency. While codes do not tell health professionals what to do in specific situations, they do provide a starting point for discussion and determination of obligations.
The language of individual rights in health care provides support for patient self-determination and self-governance. Yet, the language of "rights" is problematic in many respects. There are different types of rights that individuals claim without identifying what kinds of rights they are demanding or who has an obligation to honor those rights '” the other side of the "rights coin". Moral rights justified by moral principles and rules and legal rights justified by legal principles and rules are just two examples. Moral rights are most often negative rights, such as the right not to be tortured or the right to be left alone. But even staunch supporters of individual liberties do not defend the freedom of individuals to do whatever they wish without regard for the consequences of their decisions and actions on others.
In their discussion of rights-based ethical theory, philosophers Beauchamp & Childress (1994) say that "rights are justified claims that individuals and groups can make upon others or upon society" (p. 71). Health professionals and patients sometimes treat claims of rights as if they are absolute as noted with Mrs. R. Most rights such as claims of positive rights to health care or health care benefits are not absolute.
| Most rights such as claims of positive rights to health care or health care benefits are not absolute.
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In this case study, it is difficult to justify Mrs. R's staying in her own home and driving. She is reported to be creating undue burdens for elderly neighbors who have their own chronic health problems and putting her own safety and that of other community members (a primary concern) in jeopardy when driving. Yet, the "right" to autonomy and self-determination is invoked in this situation because she has not been declared legally incompetent and family members and agency employees are reluctant to attempt to remove driving privileges because Mrs. R has always been very independent and she is not the only driver who presents a traffic hazard.
These realities point to how inadequate it is for health professionals and their patients to focus solely on claims of individual rights and respect for autonomy as individual self-determination when the welfare of each community member is so entwined with the welfare of others. They also remind us to consider the strengths and limitations of other ethical theories that one may turn to in an effort to manage troubling ethical problems.
Utilitarian and deontological ethical theories provide two other approaches for administrators to consider in their ethical reflection. They are the theories most frequently discussed in bioethics and health care over the past two decades to assist in determining what is "right". Utilitarianism focuses on the consequences of decisions and actions for the greatest number of people or the least amount of harm for the majority. Deontological theory focuses on duties and obligations without consideration of consequences.
While administrators cannot neglect the potential consequences of their decisions and agency policies, a focus solely on a utilitarian perspective means that the welfare of an individual patient, health professional or agency may end up being ignored in the rush to pay attention to the majority of people who are affected directly or indirectly. Mrs. R could find her claimed "rights" endangered by a focus solely on the consequences of her choices to her neighbors and other community stakeholders. Her individual rights to due process could be jeopardized if the majority of people affected by her claims of a right to remain at home would unthinkingly support a "forced" move to an assisted living residence. But the utilitarian emphasis on consequences is congruent with the administrator's concerns about the consequences to the agency of continuing to provide care when patients are very marginal in the safety of their living arrangements and there is a serious question about a patient's ability to make decisions in his/her own best interests.
The administrator and case manager may consider concepts from the deontological ethic which focuses on duties and obligations. This approach takes decision makers beyond consideration of the consequences of decisions, actions, and policies to other ethically relevant aspects. They include principles of respect for persons and avoiding harm; having the "will" to do the right thing; willingness to universalize one's decisions and actions in one situation to similar situations; and never treating persons solely as means to the ends or purposes of others. For example, patients should never be "recruited" by a home care agency solely as a means of reimbursement for agency survival.
Another key principle that flows from a deontological approach is the principle of justice as fairness.
| Another key principle that flows from a deontological approach is the principle of justice as fairness.
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A key Rawlsian concept is that inequalities would be allowed only to improve the condition of the least fortunate or the most vulnerable, for example, children, the frail elderly, and the poor. The least advantaged in a society or healthcare organization would then serve as the benchmark for developing policy. Basic rights and obligations in a society should proceed from a notion of fairness for these groups. Using income inequalities and ability to pay as the sole screening devices for access to health care becomes unethical under this view of justice. Advantaged groups may still benefit from social and public policies, but consideration of the direct and indirect consequences of policy must first take into account the least advantaged. Mrs. R would probably qualify as a member of the frail elderly population. She is vulnerable by virtue of her somewhat limited capacity for making judgments in her own best interests. She is not financially impoverished at this point but will rapidly deplete her resources if she moves to an assisted living residence.
Use of a deontological approach challenges administrators who must make allocation decisions about finite economic and human resources. They cannot simply ignore the consequences of their decisions '” consequences to patients, staff, the agency, and to their own personal and professional integrity. Ethical principles and values conflict, and decision makers as moral agents must weigh and balance these conflicting principles and make judgements about administrative actions and development of agency policies with which even reasonable people may continue to disagree. This is a powerful reality in ethical reflection, decision making, and policy development. There are many realities and practical constraints that administrators and other decision makers must take into account. They include laws, rules, and regulations; cost pressures; political and power aspects; and the "culture" of the agency and its surrounding community(s).
Ethical theories of caring and communitarianism challenge utilitarianism and deontological approaches to deciding what is right. They provide different points of departure for ethical discussion, decision making, and policy development. Caring is a key value in nursing's ethic and should be for all those who purport to deliver healthCARE services. According to ethicist Daniel Callahan (1989, p. 149), caring is the most fundamental demand made on all of us as vulnerable members of the human family and the "foundation stone" upon which everything else should be built, including our healthcare systems and healthcare priorities. The idea of an ethic of caring is based on caring for people, for the environment, for society, and for one's profession (Davis, et. al., 1997). In the context of this article, one role of administrators could be viewed as "caring" for their organization or agency through the careful stewardship of human and financial resources.
An ethic of care calls for decision making focused on identifying decisions, actions, and policies that promote and maintain relationships as both an individual and collective responsibility. Callahan (1989) states: "Caring can best be understood as a positive emotional and supportive response to the condition and situation of another person, a response whose purpose is to affirm our commitment to their well-being, our willingness to identify with them in their pain and suffering, and our desire to do what we can to relieve their situation" (p. 144).
Caring has two major dimensions according to Callahan (1989). One consists of the attitudes and personal traits of individuals such as concern and sensitivity for the needs of others. The second form of caring is the way that social (or community) responses are organized, that is, needed institutional support for individuals and vulnerable populations. Patients and employees are part of a complex network of relationships to which administrators and organizations must pay attention as part of developing an ethical climate of caring. It is not too difficult to develop criteria that would identify an organization that paid attention to human relationships. One criterion would be respect for both patients and employees as members of the organizational "community" whose well-being is interrelated. The language of community is used here to denote the idea of "community" as a group of individuals in an organizational entity or system linked by common interests and goals (Aroskar, 1995).
An ethical benchmark for caring relationships in and structures of health care organizations, including home care agencies and healthcare systems, is how they contribute to the humanity of all the participants '” systems in which all those affected directly by decisions and policies participate in some model of shared decision making in which all voices can be heard. Institutional ethics committees provide one forum for beginning to accomplish such a goal. Organizations have also developed mechanisms and processes for identifying organizational values and getting "buy in" for such values as compassion and service. Once these values have been adopted they can then be incorporated in identified behaviors for employees and their evaluation (Norling & Pashley, 1995). While the concept of an ethic of care still requires further development, it points to characteristics of both individual health professionals and healthcare organizations that need attention in decision making and policy development.
Communitarian theory provides administrators with another approach to managing troubling ethical situations. This theory draws its major tenets about what makes a decision or action "right" from attention to communal values, the common good, traditions of cooperation, and social goals (Beauchamp & Childress, 1994). The idea of social solidarity plays an important role in this perspective on what constitutes right action. The language of social solidarity serves as another way to talk about the inter-connectedness and interdependence of individuals and organizations in society. Ethical commitments to cooperative values, to social goals of equitable access to health care, and to health care as a unifying rather than divisive social force, provide a different starting point for discussions about administrative decisions and obligations than does a focus solely on individual autonomy, rights, and economic goals.
Communitarianism does not provide an administrative panacea. But it has the potential for transforming discussions that focus primarily on respect for individual rights to consideration of both rights and responsibilities for providers and recipients of health care, consideration of potential consequences of different actions that might be taken for all the stakeholders, and consideration of what it means to care for persons as community members.
While no comprehensive ethical theory exists that will provide "the answer" for ethical quandaries, reflection on these different perspectives will help administrators in determining what counts morally or ethically in decision making. Such reflection often rules out options for actions that one might choose without such reflection. Ethical reflection enhances the possibility of developing ethically supportable decisions and policies that affect the well-being of an agency's stakeholders such as patients served, staff, and the community(s).
Managing the Ethical Aspects of a Patient Care Situation in the Community
First, the case manager and administrator put together a comprehensive picture of what was going on in the situation. They gathered information from individuals and agencies involved, formally or informally, in the care of Mrs. R. While agency policy required that this agency discontinue its services, every effort was made to assure that Mrs. R was not just abandoned. Meals-on-wheels was continued and key individuals from her church and neighborhood were informed of the situation. Continuing efforts were made to convince Mrs. R that she should try an assisted living arrangement which she eventually agreed to after hours of time and energy consuming discussion with her, with family members, and others. However, she was still determined to return to her own home. She did return home with a neighbor's assistance once her nutritional status had improved and she was taking her medication for hypertension under supervision. Staff in the assisted living facility were not aware that she left until she did not appear for lunch. After she returned home, she fell and had to be hospitalized with home care services instituted once again. Within a few days she had another serious fall, which she could not remember, and was rehospitalized. Her doctor insisted that she could no longer live alone. He told her that if she went home and had to be hospitalized again she would go to a nursing home and that she might not survive another fall. Mrs. R is now residing in an assisted living facility and still continues to talk about returning to her own home.
Line-drawing is another example of the issues addressed in managing this situation. The expenditure of time, energy, expertise, and financial resources by a variety of formal and informal caregivers and organizations was considered implicitly with the question: When, if ever, has enough been done in a situation in which the "needs" and demands of one individual are seemingly endless? The outcomes in this situation may not be acceptable to everyone. Yet, from an ethical perspective, it is evident that every attempt was made to respect Mrs. R, who was the recipient of community help and resources far beyond what is available for many persons in our society, as both an autonomous person AND as an interconnected member of the community.
Distributive justice as the distribution of costs/burdens and benefits has many aspects which were considered implicitly in this situation. They included the benefits of agency care to meet patient needs and consideration of the costs/burdens to individuals and the several agencies that provided a variety of services over several years. Individuals and healthcare organizations cannot survive by continuing to provide their services to individuals like Mrs. R regardless of the circumstances and consequences. That, in itself, would not be considered ethical. Administrators must constantly face issues of allocating their finite resources to the many who need them and can benefit. The initial focus of this agency on protecting patient rights and respecting the autonomy of Mrs. R was expanded in light of the changing situation to take other ethical values into account '” avoiding or preventing harm and considerations of justice as fairness to all community members who require community-based health resources.
Administrators and other decision makers, who must respond to all the Mrs. Rs in an agency caseload, situations in which there are no ready-made answers, are reminded again of the wisdom of Worthley's (1997) writings: the fabric of an administrator's ethical life is fraught with conflicting values and competing moral claims as part of the ordinary and routine delivery of healthcare services.
Implications for Community-Based Health Care
The common situation of Mrs. R and others like her provides an opportunity for all community members as current or potential patients, community agencies, and other societal institutions to plan pro-actively for the growing population of elderly. This population consists of individuals who require community-based services in order to remain at home or in other living arrangements in order to protect them from tragic consequences, including potential abandonment. Churches, schools, senior citizen centers, healthcare organizations, health plans, and legislators can provide leadership in discussion of issues involving the vulnerable in our society '” all of us at some point in time. The purpose is to inform development of public policy that is supportive of communal values and the common good.
Abandonment may occur not only for individual patients but also for agencies and their administrators. Currently, many struggle alone as they try to do the best they can under cost pressures, regulations, and other constraints. Some communities have established ethics committees which provide a starting point for dialogue that is required at community and public policy levels to assure that adequate care and caring are provided in ways that take the vulnerability of all community members, including healthcare agencies into account. Communitarianism reminds us that communal values and the views of community members, regardless of race, gender, religion, or economic circumstances, should inform development of policy responses in support of the common good, adequate health care for all, and a more just society. A focus on individual rights alone will not reach these goals.
Author
Mila Ann Aroskar, EdD, RN, FAAN
Dr. Aroskar is an Associate Professor, Division of Health Management and Policy, School of Public Health and Faculty Associate, Center for Bioethics, University of Minnesota. She received her B.A. from Wooster College, B.S. from Department of Nursing, Columbia University, M.Ed. from Teachers College, Columbia University and her Ed.D. from State University of New York at Buffalo. She is an author, lecturer, researcher and consultant on ethics in nursing, healthcare administration, and public health. She held a Joseph P. Kennedy, Jr. Fellowship in Medical Ethics at Harvard University and is a co-author of the book, Ethical Dilemmas and Nursing Practice, now in its 4th edition. Dr. Aroskar is a Fellow and former Vice President of The Hastings Center. She is also a Fellow of the American Academy of Nursing and Chair of the ANA Center for Ethics & Human Rights Advisory Board.
Article published December 31, 1998
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