Futility in Healthcare Decision Making:
“Futility in healthcare decision making” is a subject that has more recently acquired a great deal of significance. Sometimes, life saving or life sustaining treatment is not provided to a patient in a clinical setting when such treatment is deemed to be futile and therefore not in the patient’s best interests. The concept of futility, however, is related to many assumptions about quality and quantity of life and is highly debatable. This makes reliance on this concept for crucial healthcare decisions, ethically unjustifiable. A treatment that merely produces a physiological effect on a patient’s body does not necessarily confer any benefit that the patient can appreciate. The goal of medicine is to help the sick and nurses and physicians have no obligation to offer treatments that do not benefit the patients. It is argued that futile interventions are ill advised because they often increase a patient’s pain and discomfort in the final days and weeks of life, and because they can expend finite medical resources. However, patients do have a right to life and this right infringes on futility care decisions.
Literature Review:
The research article titled “Futile Care” by Coppa Seanda (1996), focuses on the economic aspects of futile care. Seanda points out to the fact that futile care faces huge challenges due to the monetary costs involved, its negative effects on staff members, and the burden it creates in allocating limited resources. Moreover, Seanda opines that ethical issues need to be considered while making futility decisions. While some ethical principles seem to support futile care, there are other ethical principles that oppose it.
· The autonomy principle states that the person’s independent actions and options should not be confined by another. In this context this means that a patient has the right to refuse or accept treatment. There are others who believe that medical professionals alone can have the right to decide regarding futile care.
· The nonmaleficence ethical principle declares that there exists a responsibility not to impose harm, the risk of harm, or evil on another. The beneficence ethical principle states that a person must help another by doing what is in his/her best interest is beneficence. However, it is difficult to decide which acts are helpful and which are harmful. Some acts such as life support systems can be seen as being helpful to the patient or tortuous to the patient.
· The principle of distributive justice asserts that resources especially limited ones should be distributed fairly. Futile care is expensive and needs valuable resources that are limited. According to this principle, justice urges society to give aid to the individuals or group that is “worst off.” The person who is not dying is “worst off” because his/her suffering can last longer than that of the individual who is dying.
Susan Bailey, in her article titled, “The Concept of Futility in Healthcare Decision Making” discusses the applicability of the ethical principle of best interests to the problem of medical futile care. Susan Bailey argues that futile care is ethically unjustifiable as the concept of futility is related to many assumptions about the quality and quantity of life. The best interests’ principle is concerned with acting in such a manner as to promote the good of the individual to the maximum possible extent. to promote maximally the good of the individual. This principle is a guiding principle for much decision making in health care. The patient’s best interests may be determined through the patient’s goals of treatment and this must precede any judgment regarding futility. Sometimes the goals of treatment can be decided by the patient himself, either through informed consent or through substituted judgment or advance instructions. The goals of treatment may also be determined, if necessary, through application of the best interests principle. According to Bailey, physicians make decisions on futile care based on a value judgment (qualitative futility). When the value judgment is hidden from the patient and those close to the patient, then, this action becomes deception. The author says that such acts infringe on the moral rights of the individuals concerned. Some experts feel that futility must be referenced to some particular moral beliefs about the value of human life, in addition to some particular goal. There are times when patients are denied treatment under the cover of futility just because the economic costs are perceived to outweigh the potential benefits. Physiological futility describes the situation in which medical treatment is physiologically unable to produce a specific outcome. According to the guidelines of The Hastings Center Task Force Report, in case of physiological futility, the professional has no obligation to provide the treatment. There has been some debate about the scientific value of the evidence upon which judgments of physiological futility are based. Finally, Susan Bailey supports a qualified version of Schneiderman and colleagues’ according to which a medical treatment is considered futile in relation to a particular illness or injury if it can be shown that in the last 100 patients such treatment has been useless. Next, she insists that the phrase ‘medical treatment that is useless’ should be clearly defined. In the situation where the best interests’ principle is relied upon to guide decision making, the patient’s surrogate decision maker(s) will need to determine the acceptable minimal level of quality of life that is in the patient’s best interests.
The article titled “Critical care nurses’ perceptions of futile care and its effect on Burnout” by Lilia Susana Meltzer and Loucine Missak Huckabay focuses on the ethical dilemmas that nurses face when families of patients demand inappropriate or futile treatment against the will and best judgment of the medical team. The study examines the relationship between critical care nurses’ perceptions of futile care and the effect of futile care on nurses’ burnout. Burnout symptoms in nurses included emotional exhaustion, depersonalization, and diminished personal accomplishment. The author points out that the burnout of nurses in critical care might also be due to moral distress that results when a person perceives that the right course of action cannot be implemented because of institutional constraints. The frequency with which critical care nurses encountered moral distress in the context of futile care was directly and significantly related to the experience of emotional exhaustion. Emotional exhaustion, according to the authors is the result of conflict with the person’s values and belief system. The authors also conclude that there is an indirect relationship between religion and emotional exhaustion. According to this study, nurses who viewed religion as important in their lives experienced fewer feelings of emotional exhaustion when confronted with ethical dilemmas than did nurses for whom religion was not so important. The authors point out that one possible explanation for this finding is that nurses with strong religious beliefs see hope and the end of life differently than do nurses without such religious beliefs. The authors suggest that nurses must have open communication with colleagues, develop skills in moral reasoning, and apply ethical principles to clinical situations. Ethical principles are the major components of decision making in critical care nursing, as well as the objective point of reference on which to base the determination of medical futility. Further, critical care nurses should attend interdisciplinary group discussions, have access to ethics committees, and be actively involved in the development of organizational policies and guidelines on futility and ethical decision making.
According to the paper by Cynda Hylton Rushton titled “Ethics and Palliative Care in Pediatrics” ethical issues on futility arise when a child has a life-threatening condition and how nurses are affected by it. Rushton illustrates the ethical issues that arise when an infant is ill with a noncancerous condition through the case study of David Fiero. At just 30 months of age, David Fiero has been hospitalized six times for more than 45 weeks. As a premature child, David had been admitted to the neonatal intensive care unit immediately after birth. He required intubation, mechanical ventilation, pharmacotherapy, IV access, and thermoregulation. He suffered a lot and had to undergo several hospitalizations and therapies. With each crisis his overall condition deteriorated. While team members began to feel that life-prolonging interventions will cause needless suffering, the parents insist that David be given every chance. This is the ethical dilemma. The burdens of life-prolonging treatment may be considered beneficial, if it increases the possibility that better treatments will be found. But when a treatment is likely to increase the child’s burden, the focus of care necessarily shifts to relieving pain and promoting comfort, rather than prolonging life. Nurses face ethical dilemmas and feel distress when they are prevented from acting according to personal values and professional standards. The authors point out that an ethical dilemma cannot be resolved by emotional appeals alone. Such ethical issues need critical assessment and analytic skills. When children cannot take independent decisions, society expects parents to take decisions in the best interests of their child. However, parents cannot make the right choice without knowing the potential medical benefits and risks associated with various choices. Even if they are well informed, parents’ decision-making capacity becomes questionable when their choices are inconsistent with the health care team’s recommendations or when they are suffering from mental illness, substance abuse or inappropriate behavior. Decisions regarding futility care in children should be taken after considering the quality of the child’s life, his ability or potential ability to relate to others, the degree of suffering evident, and his capacity to feel pain and pleasure. A decision to forgo life-sustaining treatment is considered justifiable when the child’s pain and suffering cannot be relieved or when there is irreversible brain injury that precludes interaction. In other words, in such circumstances it is ethically acceptable to allow death rather than prolonged and unrelenting suffering. The authors also say that when a nurse does not agree with the decision on futility care she must consider requesting nonparticipation in the case. There needs to be a transformation in the attitudes and beliefs of clinicians who care for children with life-threatening conditions and efforts should be taken to address the knowledge deficits of pediatric professionals.
The futility care issue is one that has suddenly become significant in the nursing context after the media focus on the Terry Schiavo case. From the above four articles, we find that futility care is something that needs to be studied from the ethical viewpoint. Decision on futility care need to be taken only based on ethical principles. But then, ethical principles can be interpreted in different ways. Each situation is different and there cannot be one general solution for all. Primarily, it is all about the right to choose. An individual has the right to choose his treatment. But then, we find that children and some individuals who have lost the faculty of reasoning cannot take decisions on healthcare by themselves. In such cases, we find that society entrusts parents and close family of the patients to make the decisions in the best interest of the patient. But parents can only see the problem from an emotional angle. They also will not be having the medical knowledge needed to understand the various choices. Hence, parents alone will not be able to make the ethical choice in futility care. Clinicians should work as a tem with the parents to arrive at the correct choice. A balance between possible benefits and risks need to be weighed before taking the final decision.
As a nurse, I feel I can integrate all this information into my professional practice. When I am nursing a terminally ill child or patient who cannot express his thoughts, I realize that I need to see the issue from the perspective of the patient. Where the patient is not able to express his feelings, I know that I must be in touch with the parents or close relatives to know the best interests. Next, I must be well informed about the medical condition of the patient, his treatment, his prognosis and the goals of treatment. I can be a mediator between the physician and the patient’s family so that the decision can be taken in the best interests of the child. I am also aware that getting myself involved can cause me burnout. I am likely to be emotionally exhausted. Hence, when there is a conflict of opinion in any case between the physician and me, I now know that it is best to stay back and avoid getting emotionally involved with the patient.
As far as I see, this problem is likely to get more and more complicated in the future years to come. With more and more old people on the terminally sick bed, they sometimes would like to have assisted suicide. Though it may be the best option according to the best interest principle, it may not be spiritually right. Again, there is a huge gap between informed consent in theory and informed consent in practice. With increasing diversity in population, one finds that many patients do not or cannot read the consent forms they’re asked to sign; time constraints often contribute to staff not using interpreters with patients whose first language is other than English. The implication of this is that many patients may be subjected to medical interventions without providing properly informed consent. Since the ethical principle of respect for patient autonomy, on which the doctrine of informed consent is based, has become a central and foundational principle in modern Western health care, the implication of this challenge is troubling. Possibilities of cloning and possible outcomes of stem cell research are likely to complicate the issue of futile care. Further, if the principle is ever established that doctors, hospitals, and ethics committees can dictate who can live and who must die, the already weakening faith of the American people in their health-care system will be seriously undermined and the door will be thrown wide-open to medical decision-making based on discriminatory hierarchies of human worth. As German physician Christoph Wilhelm Hufeland wrote presciently in 1806, “It is not up to [the doctor] whether . . . life is happy or unhappy, worthwhile or not, and should he incorporate these perspectives into his trade . . . the doctor could well become the most dangerous person in the state.”
Bibliography:
Seanda, Coppa (1996). Futile Care. Journal of Nursing Administration. December 1996. Volume 26 Number 12. Page 18.
Rushton, Cynda Hylton (2004). American Journal of Nursing. April 2004. Volume 104 Number 4. Pages 54-63
Meltzer, Lilia Susana and Huckabay, Missak Loucine (2004). Critical Care Nurses’ Perceptions of Futile Care and its Effect on Burnout”. American Journal of Critical Care. 2004; 13: 202-208
Bailey, Susan (2003). The Concept of Futility in Healthcare Decision Making. Nursing Ethics 2003. 11 (1)