Abstract
Abstract
Futility, more recently referred to as the “benefit: burden debate,” is one of the newer additions to the language of bioethics. Contemporary discussions of futility have largely considered cases involving patients in a persistent vegetative state or those requiring resuscitation or other life-sustaining therapy. However, in many areas of nursing practice, including bariatric nursing practice, moral distress emerges in the face of areas other than life-threatening situations. A case study approach illustrates these situations.
Introduction
The autonomous decision-making model places decision making in the hands of the patient, who is often ill equipped to fully understand the extent of their illness or clinical situation, especially how the situation interfaces with the technology available to them. This is especially true when the outcome is uncertain or the nurse or other clinician does not fully understand the patient's worldview. These complexities, among other factors, have created situations in which patients or families have sometimes demanded care that nurses may deem incapable of producing a desired result.
Although futility is commonly referred to when discussing end-of-life issues, the everyday challenge of balancing the benefit of care with the burden created can apply to every level of bariatric nursing care. A case study approach is presented here to discuss practical ideas for defining futility, understanding beneficence in healthcare, and discussing the obligation of the nurse to deliver therapeutic intervention that balances benefit with burden. Open and honest communication will be highlighted as one method to facilitate resolution when dilemmas of futility occur.
Case Study
Futile care takes many forms. Consider Sandra, a 76-year-old, 280-pound woman with resources to privately fund her weight-loss surgery (WLS) request. For the past 3 months, she has developed weight-related comorbidities, such as sleep apnea, knee and hip pain, and fatigue. Prior to that time, she had been very active—volunteering 8 hours a week at the local library, playing golf 4 times a week, teaching yoga-fit 5 times a week, and other activities that require physical and mental stamina. She reports that she understands the risks of WLS at the age of 76, but since her recent change in health status, each surgeon she visited felt the risks were unacceptably high despite the patient's request. She argues that she has a right to request surgery and that her developing comorbidities are a direct result of her obesity, which she expects the surgeon to help her manage with surgery. The surgeons argue the responsibility to protect against harm in the face of uncertain outcomes, asserting the benefit to burden balance is unclear. 3 One questions the benefit:burden balance inherent in WLS for older candidates. This well-recognized debate raises questions pertaining to selection criteria. Or more accurately, rights and responsibilities of both the patient and WLS team around selection criteria, as well as provisions for older candidates and preoperative preparation and care, intraoperative and postoperative care, and long-term follow-up.
Let's examine another case. Mr. Smith is a 59-year-old obese man with metastatic pancreatic cancer who has been receiving home nursing care for the past 3 months. He was admitted to an acute care hospital during the night. The following day, he was unresponsive and his respirations were 11 per minute. The clinical nurse specialist (CNS) was asked to evaluate his skin, in particular the denuded perianal area. The patient care team and family agreed upon a plan of care that included local skin care, frequent repositioning, and use of a pressure redistribution overlay, which would accommodate his width and weight. Within 20 minutes of the meeting, Mrs. Smith noticed a patient in the next room had a different kind of bed, one that looked more efficient. She called the CNS back to her husband's room and requested that her husband be provided with one of the more efficient-looking beds. According to criteria set forth at the hospital, the surface in question was not indicated for incontinence dermatitis. The patient care team felt the request for this therapy raised two issues: 1) who will pay for a surface that is not medically indicated, and 2) is it appropriate for nurses to provide treatment that is not considered useful or beneficial? The first question addresses issues more closely related to those of rationing rather than futility. However, the second does present an ethical issue—the ethics of futility.
It is necessary to distinguish between futility and rationing. Several changes in healthcare have contributed to the futility debate, such as changes in the current healthcare delivery system, shifts in financial responsibility, advanced technology, and rationing. 4 While these recent changes may fuel the futility debate, futility should be discussed out of the shadow of rationing. Unlike rationing, futility neither assumes scarce resources, necessitates a choice between persons or resources, nor denies beneficial care.
The classic case of futility, however, remains the case of the patient who is not expected to survive and is newly admitted to critical care, whose family members have not had time to adjust to the outcomes. Ms. Hsu is such a patient. Ms. Hsu, a 24-year-old, 420-pound mother of two had WLS with the enthusiasm and hopefulness of many bariatric patients. She was looking forward to improving not only her quality of life but the quality of her children's lives because she would have the opportunity to more fully participate in their lives once weight loss was accomplished. Unforeseen events brought about the tragic circumstances that led to her critical care admission, with little to no hope for survival. Families, like the Hsu family, suffer with the emerging reality of the situation by requesting intervention thought to be unreasonable on many fronts, oftentimes creating subsequent feelings of moral distress for nurses. Moral distress is the awareness of the ethically appropriate action to take but the inability to act upon it because of the nuances of a situation. 5 This is often the case when nurses are faced with the ethical dilemmas that emerge when debating the benefit:burden balance. Moral distress as an umbrella term, although initially applied to nursing practice, certainly has implications to all caring professions. 6 As is the case with the Hsu family, their tragedy likely affects each clinician who delivers care, especially as the struggle to define futility impacts each individual involved.
Futility Defined
There has been much discussion about the term futility, and some suggest the term in antiquated and ought to be eliminated. The Judicial Council of the American Medical Association agrees that the term futility is meaningless because the same clinical situation is often viewed in many different ways, even by health professionals. Despite the continued use of the term futility, ethicists encourage nurses to frame the debate more accurately as a balance of benefit and burden. Regardless, from a word-origin perspective, the term futility comes from the Latin word futilis, which means leaky. The Oxford English Dictionary defines futility as leaky or failing to achieve the desired results through some intrinsic defect. 7 In the healthcare setting, the term futile is used to describe care that is not beneficial to the patient, or the quality of having no useful results.
Although advances in technology have changed recent interpretations of the benefit-to-burden ratio, the basic notion of futility in healthcare is not new. Its origin in ancient medicine dates back to at least the fifth-century physician, Hippocrates. 8 However, in today's healthcare settings, futility can be defined as treatment that is useless or ineffective, that cannot achieve the patient's goals, or does not offer a reasonable chance for improvement. 9 For example, consider one group of caregivers in the intensive care setting who developed a working definition of futile care to mean the use of considerable resources without a reasonable hope that the patient would recover to a state of relative independence or be interactive with his or her environment. 10 The challenge remains, however. The benefit-to-burden ratio can be defined only in the context of a patient's unique and individual situation; what might be futile intervention for one patient might be appropriate care for another. 11
Trust and Beneficence
The central theme of healthcare is to help the patient. Providing intervention thought to lack benefit breaks trust with patients and families. Schneiderman and others explain that this exploits fear, inflates the realistic boundaries of what intervention can accomplish, enhances an illusion of patient autonomy, and interferes with the ability to meaningfully help the patient. 12 Consider the Hsu family: providing futile treatment undermines the therapeutic relationship and their realistic ability to move forward with the tragedy of the circumstances. Those who encourage treatments that will not likely improve the patient's condition break trust with the patient and undercut the very meaning of beneficent care. If the patient is misled to believe in a treatment's efficacy, the patient's trust is breached.
Obligation to Provide Futile Treatment
Occasionally bariatric nurses are faced with patients or family members who claim entitlement to any care they desire, regardless of the success or the outcome. Others may question the validity of certain outcomes or success of a particular kind of therapy. If the Smiths were denied access to the alternative bed because of undocumented success of this therapy for incontinence dermatitis, they might question how the success or outcome was measured. Some assert the patient and not the patient care team should decide whether or not the desired outcome is achieved. The issue of whether nurses should be required to provide care that they believe is futile is a difficult one and creates a sense of frustration because of this moral conflict. 13 Medical and legal communities disagree with the patient's asserted right to demand treatment in which the burden outweighs the benefit because clinicians believe they do not have an obligation to provide futile treatment. 14 This was equally powerful in Sandra's situation. She visited several bariatric surgeons seeking WLS surgery because she felt a sense of entitlement and asserted that the surgeon had an obligation to provide what might be regarded be some as futile treatment. This raises the question: Who decides what is futile or what is the benefit when weighed against the burden?
Who Decides?
How should one decide what treatment is futile? Some avoid regulatory guidelines because guidelines could pose a threat to professional autonomy. However, others believe there is a place for futility policies in the clinic setting. A futility policy is usually an organizational policy that supports the withholding or the withdrawal of nonbeneficial treatment. The goal of a hospital or clinic-based futility policy is to ensure the moral integrity of nurses and other clinicians and to encourage autonomous decision making by the patient and family. 15
Coppa describes a futility policy that incorporates use of an ethics committee or case conference in facilitating judgments pertaining to the balance of benefit and burden. 11 In this case, judgments are not made unilaterally. Instead, decisions are made by a number of individuals, acting in a group to arrive at the best possible, most patient-centered decision, while working within the provided limitations. Coppa asserts that this type of policy provides the best chance for the patient care team to establish a more open and honest relationship with patients and their family members. 9
Plurality of values among the interdisciplinary team, patients, and their families makes agreements regarding futility difficult, if not impossible. It is necessary to examine the values, beliefs, and understandings of patients, families, nurses, and other clinicians. A desirable resolution requires patient-centered negotiation and compromise that each party can accept.
Negotiating Differences
Taking another look at the Smiths, it becomes clearer that Mrs. Smith only wants to be assured that all reasonable means of treatment are provided to her husband of 38 years. The CNS returned to Mr. Smith's room to more fully hear Mrs. Smith's questions and concerns and to offer a more complete explanation for the chosen plan of care. As trust deepened between them, it became more apparent that like the Hsu family, Mrs. Smith was overwhelmed by her spouse's physical deterioration. She expressed that the appearance of his skin irritation was frightening but understood the rationale for the present strategies of care.
The best way to deal with confrontations between stakeholders is to stop them from occurring in the first place. 16 In order to prevent such confrontations, one must examine what motivates reasonable persons to demand futile or nonbeneficial therapy. Understanding the patient's motivations may prevent such meaningless showdowns. Communication is one strategy that strengthens rather than undermines the ideal of shared decision making.
Patients and their families, like the Hsu family, are more likely to demand futile interventions if they have not been given adequate information or have not understood fully the clinical situation. It becomes more than simply explaining treatments and procedures for the sole purpose of informed consent. Perhaps resolving cases of futile care is best accomplished by improving communication and allowing families faced with life-ending situations to accept the reality of the situation. 10 Specially trained members of the interdisciplinary team might best serve the situation by providing compassion and support to family members and other members of the interdisciplinary team. Keep in mind, situations of moral distress can become so stressful for nurses that they can lead to questions about job satisfaction and career longevity. 17
Unreasonable demands for futile care are often proportional to systematic problems. Fragmentation of healthcare delivery can lead to fear and distrust on the part of the patient and family. Use of a variety of unfamiliar consultants is likely to pose the same dilemma. Mrs. Smith did not know the CNS until she revisited the Smiths and established a more meaningful relationship; many of the issues that were very important to the Smiths were brought into a more reasonable context.
Conclusion
Recent discussions about the benefit-to-burden ratio have been useful in clarifying the nurse's responsibility to communicate, educate, establish trust, and collaborate with patients and families about significant decisions. 16 As options for bariatric medical and surgical treatment become more complex and readily available, it will be increasingly important for nurses to understand indications for these alternative treatment modalities. Employing treatments and offering equipment that will not improve the patient's status interferes with the beneficent nature of care, and, in essence, therapeutic trust can be threatened. 18 Additionally, futile care evokes strong emotional responses from nurses, and nurses requires support in dealing with this moral distress. 19 Feeling that they are “doing the right thing” is important to those in the caring profession, particularly nurses.
Nurses are in a key position to identify issues of futility and can often avoid unnecessary conflict through more open, honest communication. In cases where reasonable resolution cannot be reached through meaningful communication and trust, institutions appeal to groups such as ethics committees or case conferences to provide guidance to nurses, patients, and their families.