What is futile and who decides? The clinician’s dilemma

With advances of modern medicine come increased expectations from society, and dilemmas regarding when to stop treatment are becoming increasingly common. The Medical Board of Australia code of conduct explicitly states “you do not have a duty to try to prolong life at all cost. However, you do have a duty to know when not to initiate and when to cease attempts at prolonging life”.1 The code recommends that doctors consider the risks and benefits of a treatment and involve the patient (or his or her surrogate decisionmaker) in shared decision making. It provides a sound framework for what to do in a setting where the benefits, risks and potential outcomes of treatment can be accurately predicted and when all parties involved in shared decision making agree about what to do. However, as illustrated in the case I present here, the decision-making process becomes much more complex when there is disagreement with regard to how the expected risks, benefits and potential outcomes are valued and perceived.

This case illustrates the gap in knowledge, interpretation and opinions between doctors, patients and surrogate decisionmakers. Patients and doctors differ in their views on the utility of treatments,2 and cancer patients are willing to accept treatment for benefits much smaller than what medical professionals may consider reasonable.3 The views of surrogate decisionmakers are not always a good representation of what the patient might have wanted;4 and, as in this case, the views of family members may be divided and it may be unclear who the appropriate surrogate decisionmaker is. Should one defer to a medical judgement? Medical professionals are notoriously poor at predicting the life expectancy of their patients and find making predictions of this type distressing.5,6 The perception of utility of treatment may vary between professionals, both for personal reasons and as a reflection of their different specialties.7 Treatment of a patient with advanced cancer may be considered futile by some, as it will never achieve cure (elimination of cancer and normal survival), but worthwhile by others, as it may relieve distressing symptoms like shortness of breath, pain or inability to swallow. In an Australian study of cancer professionals treating lung cancer, doctors representing different disciplines had vastly diverse views of the utility of treatments available in this setting.8 These differences may reflect personal attitudes, but also a lack of awareness and understanding of the efficacy of newer cancer therapies. Finally, a person’s view of futility may be influenced by his or her perception of the reasons for stopping treatment. Is withdrawing treatment a way of rationing treatment that is expensive or limited in availability? Concerns about rationing may raise objections among health care providers and relatives alike.9 Less recognised, but just as relevant, is the fear of litigation.

The first step in approaching the situation of potential futility should be clarification of what the goals of treatment may be. This clarification needs to take into account the perspectives of the patient and his or her family as well as the potentially diverse perspectives of multiple health care providers who may be involved in management (Box 1). It also needs to take into account that the goals of treatment and the likely outcomes of treatment change as the patient’s condition changes.

Any inconsistencies in information presented to the family are likely to aggravate distress. Therefore, it is important that the entire health care team agrees to a clear plan that they all understand and are able to convey clearly to the patient and family. In a complex clinical setting like the one described in John’s case, this requires clear communication between all members of the team — from consultants in charge to junior doctors and nurses. In discussing their approach, clinicians need to consider whose interests they are to support (patients’ interests would come before the interests of relatives, but the need for supporting the family should not be ignored), the biases that may influence their decisions, and the inconsistencies in what is proposed (for example, given that successful resuscitation usually requires admission to an intensive care unit, can one offer it without intensive care admission?). Any conflicts need to be identified and managed with clear, calm communication.

Conflicts may arise among the family and friends of the patient and may be precipitated by a number of factors — grief, regret and unresolved family issues that may then be projected onto the health care team, who may find such conflict threatening and distressing.10

Equally, there is potential for conflict within the health care team or between teams, especially if members perceive that some views are not heard or valued. When multiple teams contribute to management, at times there is lack of clarity regarding who is responsible for overall care, and there is lack of engagement in bringing all disciplines together to resolve any divergent views. Staff who perceive themselves as powerless in influencing events, especially junior staff, may find the process distressing and require additional support. Clear leadership and support of senior clinicians and a culture of open communication and collegiality are needed to effectively resolve tensions and disagreements.

Even in the best managed setting, dealing with the issues related to futility of treatment is difficult for patients and staff alike. Patients and surrogate decisionmakers have to reconcile their sense of grief and loss, while health care professionals have to accept the limitations of their craft. It is important to recognise our common vulnerability in this difficult time and to deal with these challenges in an atmosphere that is supportive and respectful. This is fundamental to achieving resolution.