A case study is used to illustrate the dilemma of defining the role of the institution and the nursing staff when the wishes of the surrogate decision maker is at odds with the recommendation of the physician. This case represents a situation which long-term care facilities and nursing staff will be dealing with more frequently as living wills are used and the durable power of attorney is invoked.
The role of several key players, including nursing staff, is examined. Each player presents with potentially different ethical perspectives to consider as we look at ethical problem-solving regarding patient care concerns. Alternatives, choices, and potential outcomes for nursing decisions are examined along with the question of who should make long-term care ethical decisions.
Issues facing nursing and medical staff in resolving ethical problems include those of control, legal issues, failure, coercion, obligation, advocacy, respect and cost. The use of ethical principles and theories influence decision-making and are used to analyze potential outcomes in the case study.
Ethics committees have given facilities and nursing staff a format for dealing with the dilemmas that face patients, family members and staff. The role of the ethics committee has been as a resource for patients, families and staff and in the development of facility guidelines.
Bob was admitted to our long-term care facility. He had been institutionalized for over 50 of his 7O+ years after an accident had left him unable to talk, walk, or care for himself physically, md he had a history of major behavor problems. He followed staff with lis eyes and loved to eat when fed. us sister and her husband had cared :or him and participated intimately n care decisions throughout his life.
Bob's condition began gradually :hanging over a 2-week period. He was less alert and had decreased oral intake, turning his head away from itaff or letting food run out of his nouth. A 9-pound weight loss resulted. The physician was updated regularly regarding the changes and discussed placement of a feeding tube with the family.
One morning nursing staff noted mottling of Bob's legs, falling blood pressure and an elevated pulse and respirations. Oxygen was started, fhe family was notified of the change in condition and came to the nursing home, expressing concern and confusion over the situation. The physician, after telephone notification, ordered placement of an Intravenous line for hydration and a surgical feeding tube placement at he local hospital. The nurse in charge questioned the order.
Bob's sister verbalized understanding of the uses of intravenous, nasogastric and gastric tube options, stating that their preference would be to "let things be" and to keep Bob comfortable. She believed that this would have been Bob's preference as well.
The family's decision was relayed to the physician by telephone. This resulted in several angry exchanges between the physician, Bob's sister, and the nursing staff. The physician eventually hung up on the nurse. The amily felt good about their decision or Bob. Comfort measures were continued and Bob died peacefully 20 hours later, with his family present.
Bob illustrates an increasingly familiar scenario to administration and staff in long-term care. His situation illustrates the dilemma of defining the role of the institution and the nursing staff when the wishes of the surrogate decision-maker is at odds with the recommendation of the physician. While this is a single example, it represents a situation our facility has encountered several times and we believe that we will be dealing with more and more frequently.
KEY PLAYERS IN PATIENT CARE DECISION-MAKING
Using Bob's case as an example, we began examining the issues surrounding ethical decision-making. There are several players, each with potentially different ethical perspectives to consider as we look at ethical decisions regarding patient care. The patient, whose values we are unable to directly elicit due to physical changes. His family members and physician recommend conflicting actions, both presumed to be in this person's best interest.
Family members, sometimes legally defined as guardians for the patient and at other times representing their individual interests when becoming involved in patient care decisions at the end of life.
The primary physician who, in the nursing home setting, may have known the patient for many years or simply "inherited" the care of the patient due to their relocation to our facility.
The nursing staff, concerned with the legality and ethics of following physician orders which conflicts with their role of patient advocate.
The Director of Nursing, concerned with supporting the nursing staff in their role as advocates, and desiring smooth relationships with the attending physicians.
The Social Services Director, acting as the liaison between family and facility, desiring comfort with the facility's support of patient and family directives.
The Administrator, representing the facility, wishing to ensure the legality of decisions made and that any action taken is consistent with the mission and philosophy of the institution.
CHOICES AND ALTERNATIVES
In our example the patient has experienced a change in health condition from stable, although poor, to terminal. If no intervention is given, it is likely that the patient will die within a short time. WiUi intervention, life will be prolonged, but the overall abilities of the patient will not improve and death will be the end result. The primary physician orders life-prolonging, aggressive treatment for the terminal, incompetent patient. Intervention may also include shortterm hospitalisation and surgery for placement of a feeding tube.
The intention of the physician is to prolong the patient's life, although the family may argue that the intervention will only prolong the patient's suffering. If the physician does not order life-prolonging treatment, the family may feel that he is not fulfilling his obligation to the patient, and counter by not utilizing his services in the future. They may also share their feelings with other local residents who may then choose not to use his services. If aggressive, life-prolonging treatment is pursued, the physician may feel that he has protected himself.
As facility staff encountering this situation let us look at what other alternatives or choices are available and the probable outcomes of each alternative and combination. We could:
*Discuss the situation further with the family and try to persuade them to have the intravenous and/or gastric tubes placed. Outcome: the patient lives longer and the family struggles with whether they did the right thing. The family may feel pressured by the nursing staff and relate these negative feelings to the community, which could negatively impact the facility's reputation and future consumer utilization.
*Discuss the situation further with the physician, utilizing the Patient's BUI of Rights and literature references (such as "Knaus et al., who state that the continuation of futile therapy, treatment that prolongs the process of dying but offers no realistic chances of improvement, is not appropriate." [Benrubi, 1992, p. 30O]) to convince him to change his orders. Outcome: The physician may respect the literature support for withholding futile treatment and change his approach to "end of life" orders. Or he may reflect that he is in the position to give the orders, regardless of the feelings of the patient and/or family.
*Inform the facility medical advisor of the conflict regarding the physician's orders and the family's desires. Outcome: The medical advisor may support the family's desires, offering to take the case on himself or suggesting another physician who would be supportive of the family. He may support the physician's ability to order according to his wishes in this situation. He may desire not to become involved in order not to jeopardize his relationship with the primary physician.
*Involve other members of the family, if they have not become involved to this point. Outcome: Other family members may support those previously involved and may use the "strength in numbers" approach to the physician. Othei family members may divide into "pro" and "con" camps and place the patient in the middle of an ongoing war. The family may experience pain that will last far beyond the death of the patient.
*Do nothing. Accept physician orders as given and carry them oui without question. Outcome: Families and staff will continue to feel frustrated each time this scenario presents itself. The physician may be unaware mat this frustration exists. The issue of cost is involved in all approaches and bears further analysis.
WHO SHOULD MAKE DECISIONS?
"To further complicate decisionmaking, many of the residents are unable to participate in decisions regarding their medical care because of advanced dementia" (Ouslander, 1989, p. 2583). Whatever the cause, we are dealing with patients who are unable to participate in mis decisionmaking process and are unable to give their consent. Part of our dilemma hinges on who we look to for the next level of consent: physician, guardian, family, or facility.
*The surrogate decision-makers should decide end of life treatment, supported by Wanzer and colleagues (1989) who state "In the case of patients who lack decision-making capacity, surrogate decisionmakers should be identified and consulted appropriately" and "discussing the limitation of treatmenl with the family becomes a major part of the treatment plan." Ouslander (1989) notes that "Physicians who work in nursing homes must play an active role in ensuring that the rights and preferences of residents under their care are respected, the wishes of the family are taken into account when ippropriate, and the feelings of the nonphysician nursing home staff are ittended to."
*The physician should make the lecision regarding treatment, which he believes to be in the patient's best nterest, recognizing that this decision has moral as well as medical ispects.
*The courts could be requested to appoint a guardian ad !item, if no Dther court-appointed guardian existed, who could consider both the views of the family and physician in staking a decision. The time involved in this process could be a deterrent.
*The facility should make this decision in the form of a policy statement. The policy could be structured io as to be consistent with the mission and philosophy of the facility and could include cost as well as moral considerations. The ethics committee in constructing this type of policy may consider the following criteria:
"Practitioners may not sufficiently understand or value the patient's role in medical decision-making or may be unwilling to relinquish control of the decision-making process" (Wanzer et al., 1989).
Wanzer (1989) also states that physicians may fear special risks of criminal charges and prosecution related to their decisions in the care of the hopelessly ill.
"Physicians who must face issues of their own mortality in the process of withholding end of life treatment) and who often perceive such care as a reminder of their failure to cure these patients" (AMA, 1992), even when caring rather than curing becomes the main goal.
Physicians may manipulate the environment so that people will choose one alternative over another. "Even if he is aware of his manipulative efforts, he may be so convinced that what he is doing is good for the client that he fails to recognize the ethical ambiguity of the control he exercises. "The choice of goals for intervention is determined by the value perspective of the chooser." (Warwick & Kielman, 1976)
Edwards and Haddad (1988) cite a physician's request as the most common reason for nurses to compromise their ethical values. Possibly due to what Davis (1982) defines as "a strain between nurses' professional role obligations to a patient and their employee status and obligation to the institution and the physician." This becomes a major issue in the nurse's struggle to be the patient advocate.
The Code of Ethics for American Healthcare Executives (1987) states that "the role of the moral agent requires that healthcare executives speak out and take actions necessary to promote the rights, interests and prerogatives of patients or others served if they are threatened." Nurses acting as patient and/or family advocates will question unwanted intervention.
This encompasses both "respect for the individual's autonomy and recognizes that individuals are members of a human community." Respect is usually based on the values and goals of the individual. The family would represent these values when the patient is unable to do so. Autonomy rules out the paternalism of the physician or other health care professionals.
Life-prolonging treatments are able to be administered in the nursing home setting with outpatient hospitalization for insertion of a feeding tube. In Minnesota, nursing homes are not able to re-categorize this patient for increased case mix reimbursement without a 24-hour hospitalization. These treatments can result in high cost financial losses.
ETHICAL PRINCIPLES TO CONSIDER IN PATIENT CARE DECISION-MAKING
Moral principles come to play in all discussions of ethical decisionmaking. Actual patient autonomy and right to refuse treatment are impossible here, due to his inability to participate in decision-making. The argument of burden versus benefit notes that "Artificial nutrition and hydration can be very burdensome to patients. Individuals might weigh differently the value of additional life versus the burden of additional treatment" (AMA, 1992). The patient is often deemed the best judge of benefit versus burden. The question of length of life versus quality of life is discussed with the example "If our attention to fluid and electrolyte balance manages to postpone the patient's death for 24 hours, were our efforts futile?" "A treatment that is likely to cause the death of a patient violates the principle of nonmaleficence, and a failure to save a patient's life is contrary to beneficence. However, for these decisions near the end of life the patient does not consider his or her death to be an absolutely undesirable outcome (Healey, 1992). The withdrawing or withholding of lifesustaining treatment is not inherently contrary to the principles of beneficence and nonmaleficence" (Healey, 1992). "The ethical principle of beneficence requires that the physician exercise appropriate clinical judgment" (Miles, Singer, & Siegler, 1989). Tables 1 and 2 illustrate a case analysis of decisions made according to a variety of ethical theories.
Case Application fe CtJtlcal Theories
What is appropriate seems to be subject to change. There is belief that decision-making standards are shifting from a standard using patient and physician preferences to one where third parties, including institutional ethics committees will evaluate quality of life and statistica futility. Physicians may rate the patient's quality of life very differently than the patient, which becomes an important point if the physician rating is used to override patient preferences. "Physicians may be best suited to frame the choices by describing prognosis and quality 01 life - as well as the odds for achieving them. Physicians should not offer treatments that are physiologically futile or certain not to prolong life" (Miles, Singer, & Siegler, 1989).
Case Application fo Ethical Theories
ETHICS COMMITTCE ACTIVITIES
Formation of ethics committees ias given facilities a format for dealing with the dilemmas that face patients, family members and staff. Our facility's ethics committee has jeen active for 5 years. The committee has kept informed on current ethical issues by developing a library of books, videos, and journal articles dealing with ethical dilemmas in health care, some particular to the Catholic church's interpretation of these issues. Educational programs have been presented for staff, patients, family and community members. Policies surrounding resuscitation decisions have been developed. Individual cases have been analyzed and recommendations developed. Aroskar (1984) defines one of the possible roles of the ethics committee as "protecting the incompetent patient's interests." Our ethics committee has begun the process toward resolution of future decision-making conflicts in several ways. An education session was held for physicians, staff and families on the Durable Power of Attorney for Health Care. This gave participants insight to how this procedure can be used to facilitate medical decisionmaking and communicate desires to physicians prior to the end of life situation. It also helped to clarify differences between the Living Will document and the Durable Power of Attorney for Health Care.
We are also beginning the formation of a set of guidelines for patients, families, physicians and staff. While we resist the term "futility guidelines/' the guidelines will help us determine in a general way our beliefs as a facility. They will be founded in our mission and philosophy, which are based on the teachings of St. Benedict. We have chosen guidelines because we know that each situation will have to be looked at individually.
Ethics committees will have to consider the moral principles and ethical theories that are at stake in each situation. Each decision will be based on the facility mission and philosophy, perhaps remembering that "the concept of a good death does not mean simply the withholding of technological treatments that serve only to prolong the act of dying. It also requires the art of deliberately creating a medical environment that allows a peaceful death" (Wanzer et al., 1989). And a peaceful death is a desire shared by our patients, family members, and the nurses and physicians who care for them.
- American College of Healthcare. (1987). Executives Code of Ethics. Healthcare Executive, 2(5), 54-55.
- Aroskar, M.A. (1984, March/April). Institutional ethics committees and nursing administration. Nursing Economics, 132.
- Benrubi, G.I. (1992). Futility. Southern Medical Journal, 85(3), 299-300.
- Council on Ethical and Judicial Affairs, AMA. (1992). Decisions near the end of life. Journal of the American Medical Association, 267(16), 2232.
- Davis, AJ. (1982). Helping your staff address ethical dilemmas, Journal of Nursing Administration, 12, 9.
- Edwards, B., & Haddad, A. (1988). Establishing a nursing bioethics committee. Journal of Nursing Administration, 18(3), 32.
- Healey, J.M. (1992). Futility, shared decision making, and the doctor-patient relationship. Connecticut Medicine, 3, 166.
- Miles, S., Singer, P.A., & Siegler, M. (1989). Conflicts between patients' wishes to forgo treatment and the policies of health care facilities. New England Journal of Medicine, 321, 49.
- Ouslander, J.G. (1989). Medical care in the nursing home. Journal of the American Medical Association, 262(18), 2583-2586.
- Wanzer, S.H., Federaran, D.D., Adelstein, S.J.,Cassel, S.K., Gassen, E.H., Cranford, R.E. et al. (1989). The physician's responsibility toward hopelessly ill patients. New England Journal of Medicine, 320, 845-846.
- Warwick, O.P., & Kielman, H.C. (1976). Ethical issues in social intervention. In W.G. Bennis, W.G., K.D. Benne, & R. Chin (Eds.), The planning of change (2nd ed.) (pp. 479, 489). New York, NY: Holt, Reinhart & Winston.
Case Application fe CtJtlcal Theories
Case Application fo Ethical Theories