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Guest column: The ethics of discontinuing home health services
Consider autonomy, justice, beneficence
By Elizabeth E. Hogue,
Over time, patients who initially are appropriate for home health services may no longer meet the agency’s care criteria. For example, a patient’s clinical condition may become so complex that he or she cannot be treated properly at home.
Likewise, the availability of reliable primary caregivers may change. The patient’s spouse may become too ill to participate in care any longer. Case managers or discharge planners may recommend nursing home placement for patients they reject.
However, under these circumstances, staff may have concerns about termination of services that they express in terms of ethics. They may, for example, acknowledge that it is legal to terminate services, but they may express uncertainty about whether discontinuation is ethical.
As a result, it is important to address ethical concerns about termination of services. One of the most common dilemmas faced by home care staff members occurs when patients refuse transfer to a nursing home.
A careful review of this issue from an ethical point of view should include examination of three principles:
Autonomy generally means that patients make choices and act upon them.1
The primary mechanism for ensuring patients’ autonomy in home care is through the use of a process of informed consent. Patients are given information about treatment alternatives upon which they base their choices. This ethical principle requires health care providers to honor patients’ choices, including decisions to refuse treatment.
Bioethicists recognize the right of patients to refuse treatment in the form of nursing home placement. Patients have an absolute right to stay at home, and staff are ethically obligated to honor patients’ choices.
But does the patient’s decision to refuse treatment mean staff should continue to arrange for or provide care in inappropriate settings? Must staff members help patients refuse treatment by continuing to provide care at home?
The principles of justice and beneficence/nonbeneficence may provide some insight into the answer to this crucial question.
Justice means every patient receives his or her due. Individuals are entitled to justice. According to the principle known as distributive justice, justice must also be applied on a communitywide basis.1
So a key question is: What is "just" for both individuals and the community in the case of patients who refuse nursing home placement?
Patients who are inappropriate for home care often gobble up agency resources. When patients who need continuous care receive only intermittent services, staff almost always end up trying to take up the slack by going well beyond the proverbial extra mile.
Although ethical issues are sometimes characterized as matters of patients’ rights, it is important to recognize that ethical principles apply to everyone, including staff members, involved in the care of patients. Do staff members receive their just due when they are asked to care for patients who are inappropriate for home care and perhaps at great risk of injury as a result? In terms of distributive justice, is it fair to other patients to lavish attention on patients who are inappropriate for home care, which may prevent others from receiving adequate attention?
When viewed from this perspective, staff may conclude that it is not just to continue to arrange for or provide services to patients who refuse nursing home care.
Another dimension of justice also is relevant. Justice implies that patients are entitled to their due in the sense of appropriate care. When agencies assist patients who remain at an inappropriate level of care, and patients are denied justice in this form, agencies may not be acting in a manner consistent with ethical principles.
Beneficence/nonbeneficence also must be examined in view of this dilemma. Beneficence means staff members act to do good for patients. Nonbeneficence is a more passive principle that basically requires staff to do no harm.1
Some care may not be better than no care
What action should agencies take when patients refuse treatment in the form of nursing home placement? Both justice and beneficence may dictate that patients take action to secure appropriate treatment in a nursing home. Thus, although home care practitioners tend to conclude that "some care is better than no care," this conclusion may be ethically unsound. The principle of nonbeneficence may dictate discontinuation of home health services in order to avoid enabling patients to remain in inappropriate settings.
Consideration of ethical issues always involves balancing ethical principles with various participants’ points of view. There are no easy answers to ethical questions in home care. Providers, however, must be careful to engage in ethical decision-making, as opposed to operating from the "gut," when a situation just feels wrong. When providers engage in a process of ethical decision-making, they may conclude that they are acting ethically when refusing to arrange or discontinuing services for patients who are no longer appropriate for home care.
[A complete list of Elizabeth Hogue’s publications is available by contacting: Elizabeth E. Hogue, Esq., 15118 Liberty Grove, Burtonsville, MD 20866. Telephone: (301) 421-0143. Fax: (301) 421-1699. E-mail: firstname.lastname@example.org.]
1. Beauchamp T, Childress J. Principles of Bioethics. New York: Oxford University Press; 1980.