By: Karen Neuman Allen, Ph.D., LMSW
Social workers can be instrumental in helping hospitals, nursing homes, home care agencies, and other health care organizations resolve complex cases with ethical dimensions. One way of contributing to the process is though involvement with the organization’s ethics committee. There are two ways in which social workers are involved in ethics committees. One is by making a request for a consultation on a case by the ethics committee. The second is by serving as a member of the committee. For the purposes of this article, we will consider an ethical dilemma to be a situation in which a decision has to be made and each option compromises or conflicts with an ethical standard in some way.
Overview of the Ethics Committee
In 1992, the Joint Commission on the Accreditation of Health Care Organizations mandated that health care systems develop a formal mechanism for addressing ethical issues in patient care. By 2000, 95% of hospitals surveyed had or were in the process of developing an ethics consultation service (O’Reilly, 2008). Larger home care agencies and nursing homes followed the lead of hospitals and developed ethics committees or consultation, as well.
An ethics committee is an interdisciplinary group of providers, staff, patients, family members, administrators, and lay people who volunteer their time and expertise to the hospital so that a fair, inclusive, and consistent process is used to resolve ethical dilemmas. In addition to consulting on individual cases, the committee develops relevant policies and procedures, provides staff and community education, resolves conflicts, advocates for legal and policy changes, and provides support to staff who are troubled by ethical dimensions in a situation. The composition of the committee is critical, and it is essential that patients and leaders from the community participate and are not marginalized or intimidated by members of the medical team (American College of Physicians, 1998; Ross, et al., 1993). Although there may be some overlap, the role of the ethics committee is usually different from that of the Institutional Review Board (IRB). The ethics committee is centered on issues related to patient care, whereas the IRB reviews research conducted at the institution to assure regulatory compliance and protection of human subjects.
According to the American College of Physicians (1998), the purposes of an ethics committee are to:
- provide support and guidance to patients, families, and the health care team in complex situations in which ethics, values, legal principles, and cultural and religious practice conflict, and potentially affect patient care;
- review cases as a consulting service when ethically complex cases arise;
- help clarify the issues;
- identify all potential courses of action and decisions;
- help weigh the possible options and make a recommendation;
- help the patient, family, and treatment team reach a consensus on a decision;
- review the outcome and implications of each case; and
- promote policies and practices that assure best ethical practices in the institution.
Case Consultation by the Ethics Committee
The range of issues in cases presented to ethics committees covers the human life span from the beginning of life to the end of life. New technologies, which are often very expensive, continue to evolve. Some of these technologies have been proven to improve health and extend life; others have yet to be fully tested. When called upon, the ethics committee can help the patient and physician decide whether these treatments are appropriate. Depending on the situation, further interventions may be futile and may result in harm to the patient by causing discomfort and complications. Ethics committees are frequently involved in end-of-life decisions, when to resuscitate or not, and deciding who is the most appropriate spokesperson for patients when they can’t speak for themselves and have not completed advance directives. Another important issue for ethics committees arises when patients and families want something other than what the physician recommends. Also, ethics committees are often faced with decisions about the appropriate use of health care resources and whether providing exhaustive care to one individual deprives other individuals of care.
In some organizations, any staff member may request an ethics committee consultation or may ask the committee for guidance in other ways. Sometimes, only a physician can make a referral to the committee. Regardless of who can actually initiate the referral, social workers should not hesitate to request and advocate for an ethics committee consultation if they feel that the best interests of the patient, family, and/or staff would be served.
Once an ethics committee consultation is requested, the chair of the committee—along with one or two other members—will review the case. After reviewing the medical record and talking with the health care team, they may talk with the patient (if appropriate) and the family. As part of its consultation, the ethics committee will consider:
- the patient’s medical condition and prognosis;
- the capacity of the patient to participate in decision-making and understand the consequences of the decision;
- the role and rights of others in the family system in making decisions, especially when the patient is incompetent;
- the anticipated burdens and benefits of the proposed treatment, including whether the treatment is likely to cause pain and discomfort to the patient without a reasonable expectation for recovery;
- costs associated with the treatment, including dollars and other health care resources, potentially at the expense of other patients seeking care;
- life expectancy and expected outcome, with or without treatment; and
- pain, suffering, and quality of life with and without the treatment.
The ethics committee will also explore what is known about the patient’s wishes and whether or not advance directives are in place. Religious considerations will be considered, along with any legal factors, including the potential legal risks to the hospital and medical team if a particular course of action is decided upon. After gathering all the information, talking to stakeholders, and weighing all the options, the committee will make a recommendation. The consultation may or may not be formally documented in the patient’s chart or in other records the hospital maintains (American College of Physicians, 1998).
Serving as a Member of an Ethics Committee
The extensive training social work students receive in social work values and ethics in accredited programs prepare us to make valuable contributions to our organizations and clients when ethical dilemmas arise. The solid foundation of our profession in humanistic values and the strength and clarity of the NASW Code of Ethics (2008) provide an important framework for helping determine the best course of action in these situations. In particular, our strengths perspective, the ecological framework, commitment to social justice, and client self-determination are unique among health care professionals.
Social workers have much to offer when serving as members of ethics committees (Csikai & Sales, 1998). After exploring the patient’s family and support system, we can make suggestions as to who should be included in the process. The assessment skills of the social worker are useful in helping to determine if a patient/family is fully able to understand the issues and able to participate in the decision-making process. For example, in many cases, it is critical to include representatives from the patient/family’s religious and/or cultural community, so doctrinal considerations and cultural values can be explained and respected. The social worker can also provide emotional support and clarification to the patient and family as things unfold. Many times, the social worker acts as the voice of the patient and family, explaining to the consultants what their wishes are and advocating for them to be respected (Rothman, 1998).
The social worker’s understanding of social justice issues is also critical in cases in which decisions involving poor, underinsured patients must be made. The social worker, sensitive to historic practices of discriminating against minorities and the poor, is critical in assuring that all patients, regardless of race, ethnicity, and income are treated fairly.
However, social workers need to understand that the codes of ethics and values orientation for each discipline on a health care team are different. Although there are commonalities, subtle differences can change the way each member of the team views a situation. For example, the NASW Code of Ethics (2008) is unique in obligating us to work for social justice in all spheres of society. We also tend to take an expansive view of the right to self-determination that is non-judgmental in nature, even when individuals make unhealthy choices. Nurses, for example, are obligated to work for social justice only as it pertains to health care related issues. They are also guided by an ethic of caring and, in trying to provide care to the patient, sometimes have difficulty with client self-determination. Social workers can help the staff understand and respect client self-determination and help them with feelings of frustration and concern for the patient’s well being.
Physicians, in addition to allopathic (M.D.) and osteopathic (D.O.) codes of ethics, are guided by the Hippocratic Oath, which above all, counsels them to “do no harm.” This, coupled with a real concern for legal risks in complex cases, can encourage the physician to make conservative decisions in ethically complicated cases.
Biomedical Ethics and Other Approaches
Biomedical ethics is a sub-field of ethical philosophy. Medical ethicists Beauchamp and Childress (2001) have identified four essential bioethical principles that commonly form the framework for resolving a dilemma. These are: autonomy, beneficence (doing good), non-maleficence (not doing harm), and justice. Although not strictly rank ordered, certain principles take precedence over others. For example, the principles of patient autonomy and non-maleficence are generally primary. In biomedical ethics, the principle of justice involves questions such as the fair allocation of health care resources with respect to the individual patient and the society as a whole.
Two more general ethical approaches are important for social workers to consider, as they can help explain how different individuals react in these situations. For some people, there are absolute principles that should never be compromised. This is a deontological argument, which is also called fundamentalism. Outcomes, even positive ones, are considered unethical if absolute ethical principles were violated at any point in the process. In this approach, the ends never justify the means.
The opposite approach, called teleology (consequential), looks at the end result and argues that if an action generates a positive outcome, it is justified. Pragmatism and utilitarianism (the greatest good for the greatest number of people) are teleological positions (Congress, 2000; Ross, et al., 1993; Reamer, 1995).
Think of the following dilemma. During World War II, Nazi physicians performed atrocious medical experiments on unwilling, captive Jewish prisoners. Some of these experiments, although horrible, yielded important results with the potential to save lives. Is the use of this information ethically justified? What would a deontologist conclude? A teleologist or pragmatist?
Although the principles of biomedical ethics can provide a framework for all members of the health care team, sometimes conflict and tension occurs. It should be recognized that in most cases, team members are sincerely vested in trying to do what they think is in the best interest of the patient. Social workers need to use a non-judgmental attitude toward colleagues and apply their conflict resolution skills to support the team and its members. It can be helpful to understand whether individuals who are struggling with the ethical issue have an absolutist (deontological) or consequential (teleological) frame of reference. It is difficult to change an individual’s orientation, but understanding where the person is coming from can help develop dialogue around the issues. It is also critical to understand that professional ethics differ across disciplines.
A fifty-eight-year-old woman with Down syndrome is admitted to the emergency room from the group home where she resides. She has severe cognitive impairments, does not follow commands, is non-verbal, and completely depends on others for her self-care. Her admitting diagnosis is acute dehydration, malnutrition, and multiple severe decubitus ulcers (bedsores). Other medical conditions include pulmonary hypertension, kidney disease, and stroke. She is treated for her presenting problems, and a feeding tube is inserted, but cardiac problems develop. It is felt that her prognosis is extremely poor and that she will continue to encounter one problem after another until she dies. Further, some of the treatments seem to be causing her pain and discomfort, and staff members are extremely troubled by this. The physician assigned the case requests a do-not-resuscitate (DNR) order from the court appointed legal guardian, who refuses. The physician requests an ethics committee consultation.
The committee reviews the situation. After much effort, the social worker reaches the guardian, who is a lawyer from a private firm that takes on guardianship cases for a fee. The guardian again refuses the DNR order, explaining it is against the law. The social worker then asks whether or not the guardian has ever visited the patient in the group home, has been involved in any case planning conferences, or has ever reviewed the care given in the home. The guardian indicates he last saw the patient three years ago when she was first placed in the group home.
The social worker then asks permission from the ethics committee and the attending physician to directly intervene. She contacts the state advocacy agency in the state for the developmentally disabled. She confirms through this agency that it is indeed against the law in that state to issue a DNR for a developmentally disabled individual. She understands that this law was enacted because of the medical abuses these individuals have historically been subjected to and was intended to protect them. She is informed that although a “blanket” DNR cannot be issued, with the consent of the guardian, specific decisions to withhold futile treatments may be made.
The social worker communicates her concerns about the guardian’s lack of involvement and the poor care at the group home that resulted in the patient’s malnutrition, dehydration, and bedsores. Working with the agency, referrals to adult protective services and the group home licensing board are made.
The social worker and ethics committee then meet with the treatment team. The social worker informs them that she has confirmed the law prohibiting a DNR order and explains why such a law has been enacted. She explains to the team that they can ask the guardian for permission to withhold specific treatments. Team members, although still concerned, understand the reasoning behind the law. The social worker informs the team that a process has been initiated to replace the guardian and locate a new group home for the patient. While this process unfolds, the patient’s kidneys begin to fail. Although the guardian has authorized dialysis, the patient is too confused and disoriented to sit through the procedure without being sedated. Eventually, the guardian consents to stopping the dialysis, and the patient dies peacefully in the hospital a few days later.
Analysis of the Case
In any ethically complex case, it is critical to tease out ethical issues, values conflicts, legal concerns, and agency policies and practices that might be involved. In this case, the legal issues involved the medical neglect at the group home and an uninvolved legal guardian. All four principles of Beauchamp and Childress’s biomedical ethics are reflected in this case. Team members felt they were not helping the patient (beneficence) and were, in fact, causing harm (violating non-maleficence) by performing procedures that caused pain and discomfort. Social justice issues were involved by the recognition that expending health care resources to a patient who is not likely to benefit increases health care costs and potentially limits the treatment available to others. Finally, the patient’s autonomy and self-interest were compromised by a guardian with little involvement and apparent interest in the patient’s situation.
The social worker’s perspective includes all of the above, but is slightly different. Among other things, our values around human dignity are confronted in this case. Further, the legal/ethical obligation to intervene when vulnerable individuals are at risk necessitates that we initiate a protective services referral. Our ethical obligation to advocate for social justice and more humane social institutions suggests requesting a licensing investigation of the group home and initiating a legal petition to replace the guardian. Our knowledge of policy and community resources enables us to know how to analyze laws and policies and to notify the appropriate state agencies. Our interpersonal skills enable us to understand the difficulty the team is experiencing and to provide support and education. It is unlikely that most other members of the team would see the case this way or to have the necessary knowledge and skills to develop and implement this particular course of action.
By understanding the complexity of ethically involved situations; recognizing that every member of the team is trying to do the right thing as he or she sees it for the patient; using the skills, knowledge, and values of the profession; applying a logical process to reach ethical decisions; and using a coherent philosophical position to justify a decision, social workers can make significant contributions to a hospital ethics committee. Our involvement can help assure that the best possible outcome is achieved, that patient rights and wishes are protected, and that the organization and members of the health care team are supported.
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National Association of Social Workers. (2008). Code of ethics. Retrieved from http://www.naswdc.org/pubs/code/default.asp.
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Karen Neuman Allen, Ph.D., LMSW, is Associate Professor and Social Work Program Director at Oakland University in Rochester, Michigan. Prior to her academic appointments, she worked for more than 15 years as a health care social worker. After a number of years of clinical practice, she worked in hospital administration, overseeing the social work program, infection control, utilization review, and education departments. In this role, she initiated, developed, and chaired the hospital’s first medical ethics committee.
This article appeared in THE NEW SOCIAL WORKER, Fall 2011, Vol. 18, No. 4, pages 4-7.