Handling Cases of ‘Medical Futility’
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- Gallagher, C.M. & Holmes, R.F. HEC Forum (2012) 24: 91. doi:10.1007/s10730-011-9168-3
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Medical futility is commonly understood as treatment that would not provide for any meaningful benefit for the patient. While the medical facts will help to determine what is medically appropriate, it is often difficult for patients, families, surrogate decision-makers and healthcare providers to navigate these difficult situations. Often communication breaks down between those involved or reaches an impasse. This paper presents a set of practical strategies for dealing with cases of perceived medical futility at a major cancer center.
KeywordsMedical futilityEthics consultationEnd of lifeBeneficial and non-beneficial treatment
While others have defined it with varying specificity, (Callahan 1991; Lantos et al. 1989; Youngner 1988; Truog et al. 1992) medical futility can be generally understood as involving a treatment that would not provide for any meaningful benefit for the patient. Often it is not clear whether the treatments will end up being futile, let alone the final outcome under a particular care plan (Frick et al. 2003). Our goal in this essay is to introduce common challenges that occur in cases where there is a perception of medical futility, or what may be better termed as non-beneficial treatment, and common practices used by an active Clinical Ethics Service in a large specialty hospital.
The University of Texas MD Anderson Cancer Center is one of the world’s largest and most recognized cancer centers. More than one million outpatient clinic visits, treatments or procedures are done annually and in 2009, the center had 23,277 hospital admissions. MD Anderson services range from cancer prevention to survivorship and participates in more than 1,000 open clinical research protocols to support the care of patients and learn more about future prevention and treatment methods (Frick et al. 2003). The consultation service sees an average of 80 cases a year and is active in teaching, IRB, and committee work.
In a review of our consult database, we examined our practice for handling cases that were brought to the service as being medically futile. We found that, while there were few unique elements amongst the patients or healthcare providers, there were commonalities and themes within our own recommendations for this issue. We offer these findings as a reflection of our practice and as points for consideration for healthcare providers faced with issues of medical futility.
Practice: Commonalities at MD Anderson Cancer Center
Consults that center on futility are not all that common, even at a major cancer center where very sick individuals come to seek treatment. However, there is a certain amount of common practice when these situations do arise, particularly within communication models similar to those seen elsewhere (von Gunten et al. 2000).
Futile cases in many ways are no different than others that come to an ethics consultation service. They typically involve conflicts over values and authority, which values should take precedence and why. As such, the recommendations that follow will seem very similar to those that might be used in other cases. However, cases of futility do present interesting and noteworthy differences. First, these cases often involve patients at the end of life. As such, they are charged with families who see loved ones dying and physicians who wish to mitigate harm to these vulnerable patients. Second, by labeling cases as futile, the rifts that exist between the parties may become more exaggerated in a unique way. Futile treatment has a great deal of moral baggage associated with it, not the least of which is the implication that the efforts of the physician are not benefiting the patient in a meaningful way. This can cause clinicians to become frustrated or even resentful of families or surrogate decision-makers who continually request such interventions. Finally, these cases involve a great deal of physician judgment, primarily as it relates to the efficacy and appropriate nature of interventions. While this can be true of other non-futility based ethics consultations, because of the high-stakes nature of futility cases, interpersonal dynamics, ethical convictions and other similar areas of conflict can be uniquely amplified such that physicians may feel devalued because their judgments are not given appropriate weight while families and surrogate decision-makers may feel railroaded or abandoned by the stance of physicians. As such, the following practices and guidelines reflect the need to consider these underlying tensions that are particular to cases of ‘futility.’
The most common recommendation and practice generally focuses on giving the patient or family member time to express their understanding of the situation and ensuring that they are adequately informed of the physicians’ view of the patient’s medical condition. This often occurs in a care conference setting, offering the patient or family members a chance to hear the medical opinions. Taking time to allow the family members to comprehend situations in which there is little chance of recovery is perhaps one of the more important aspects of care, as it allows for the continuation of trust in the relationship between provider and patient or family. The amount of time that can be allotted will, of course, vary in each case. Occasionally, the ethicist involved with the case will establish a time frame for the family or caregivers should decisions be time sensitive. This may be necessary for decisions about life-sustaining interventions, or may simply reflect the need for an outcome in an already protracted situation. In cases such as these, family members may be adhering to unrealistic expectations for long periods of time such that the only foreseeable resolution is to set a hard deadline for those involved.
It is also common that the physicians in these situations feel that family members are being irrational. This tends to lead to an adversarial relationship in which both parties become entrenched in their positions. While it is true that families can get swept into the emotional aspects of caring for a loved one, generally they simply wish to advocate for the best care of their loved one. The challenge is coming to terms with the impending death of a loved one. Rushing families into ‘accepting’ this often leads to a feeling of abandonment and distrust where the family members feel that their loved one is not being adequately cared for and may feel the need to become extra vigilant in their advocacy for their family member. Cases of futility can exaggerate this confrontational aspect of the relationship between the provider and the surrogate decision-maker or family, as clinicians may feel the need to stop what they perceive to be non-beneficial treatment as soon as possible. When given time to grieve, however, families ultimately want what is best for the patient—some individuals just take longer than others to work through their anticipatory grief.
While it is important to allow for the family or surrogate decision-maker to come to terms with the impending death of the patient, it is also appropriate to set limits as to what care will be provided. In the consultations seen within this institution, a common recommendation is to determine what interventions would be inappropriate. In the State of Texas, providers are not required to offer treatments that would be considered medically inappropriate. This is particularly true in the case of resuscitation orders, which are treated as medical interventions, and their appropriateness determined by medical professionals, sometimes being decided differently than family or patient wishes. Though this is not the case in all states, nor is it the case that these decisions are made without informing the patients or their surrogates, it is important to note that as a medical professional, it is the duty of the physician to establish what is medically appropriate and what is not. As such, if a procedure or intervention is not medically indicated or medically appropriate, it should not be offered as if it were. In this way, it is appropriate to set limits as to how much treatment and which treatments will be offered (Tomlinson and Czlonka 1995).
Questions to ask families or surrogate decision-makers:
How did (patient’s name) live his/her life?
What was important to him/her?
Had s/he ever experienced long periods of illness? Have they been part of caring for someone who has?
If your loved one were able to understand all that we have talked about in terms of his/her care and could speak to us, what would s/he say?
Family members may feel a sense of guilt that they would be giving up on their loved one. They often feel that they must do what is right for the patient, a feeling that should be praised. Occasionally, however, this means that they are unwilling to act in a manner that they perceive as admitting defeat, or somehow not doing what they should to make sure their loved one is made well. In cases of futility, the pressure to conform to the clinicians’ recommendations of withholding or withdrawing treatments can intensify these feelings, as there may be a sense that the clinicians are somehow giving up, leaving only the family member or surrogate decision-maker to be the lone or final decision-maker. For these family members, or surrogate decision-makers, it is important to emphasize substituted judgment. Ideally in patient care settings, we ask the patient to make decisions about the type of care they would like to receive and their preferences about this care. When we cannot ask the patient, we look for those who know the patient and would have a good understanding of how the patient would have responded to those questions, were he or she able. That is, we ask individuals to think like the patient, to substitute the patient’s wishes and thinking for their own and to make decisions as they think the patient would have. In this way, we are not asking the family member or surrogate decision-maker to decide, but rather to tell the healthcare team what the patient would have decided were he or she able to speak for him or herself. Such a distinction is important for those who feel the sole burden of making the decision to discontinue life-sustaining interventions, as it is really not they who are making the decision, but rather they are simply conveying what the patient would have wanted for himself or herself. In this way, their feeling that they ‘gave up’ on their loved one may shift to understanding that they are advocating for what the patient would want and how he or she would want to be treated. It is also important to utilize the resources of the institution in these situations including the Departments of Social Work, Chaplaincy and Pastoral Education or any psychological support services that might be available to family members of patients.
This institution tends not to appeal to the section of the Texas Advanced Directive Act that addresses futile care when handling these cases (TADA Sec. 166.046). This section allows for physicians to assess the medical appropriateness of interventions and, after a review process and a period of time in which the patient or family can request to be transferred to another facility, it gives the institution the authority to decide whether to remove interventions, despite the objections of the patient or family (Texas Advance Directives Act of 1999). While it is ultimately available in Texas, we find that there are usually other ways to resolve these disputes. This is not to say that it is not used, but rather that its use is rare and represents a tiny percentage of the consults in this area done at our institution.
Suggestions for Community Physicians
Steps to consider in talking with families or surrogate decision-makers
1. Clarify goals of care
2. Assess whether all reasonable options have been attempted
3. Do not offer options that are not medically appropriate
4. Establish guidelines and limits for interventions in place
5. Seek to address emotional needs of the caregiver
Clarify Goals of Care
Clarifying the goals of care is important to establish a common ground for all parties. It allows the physicians to outline their perception of the medical possibilities and for the family to discuss their understanding of the situation. This is also a time to listen to the family or surrogate decision-maker’s understanding of the situation and their expression of how the patient would wish to be treated. The medical determination to shift from curative treatment to palliative care, when appropriate, needs to be clearly stated, and the patient decision-maker‘s understanding of what is expected to happen next should be clarified.
Assess Whether All Reasonable Options Have Been Attempted
After clarifying the goals of treatment, it is important for all involved to assess whether all reasonable interventions have been attempted. This is an important step for both parties. By reviewing the treatment options, clinicians can both assess whether they have done their very best for the patient, despite any emotional reactions they have to the case, and reassure the family or surrogate decision-maker that they have indeed offered what they can. This assessment can thus provide comfort to both parties by ensuring that all options are considered and appropriate measures are taken.
Do Not Offer Options That Are Not Medically Appropriate
When putting forth options to families or surrogate decision-makers in these situations, it is important to highlight only those that the care team feels are medically appropriate. Families and surrogate decision-makers in these situations are very often looking for any hope that their loved one will recover. While a physician should not seek to deter that hope, offering treatments that have a high risk-to-benefit ratio, a low likelihood of achieving notable results, or treatments that the physician or medical team do not feel comfortable in offering only add to the decision-maker’s confusion in an already challenging situation. If there are reasonable options to provide, these should be offered. If there are not, offering slim chances does not serve to benefit the patient or their loved ones.
Establish Guidelines and Limits for Interventions in Place
Setting limits and key benchmarks for interventions already in place is important for all parties and should be central to cases of medical futility. Since futility is focused on the efficacy of treatments, it is important for those involved to understand the effects and limits of the treatments in question. Physicians and caregivers should know why the intervention is in place, what role it serves in the patient’s care, and the duration that it will be in place. This is also important for establishing how it will be utilized, whether it will be altered and why, and when or if that intervention will be removed. For a patient who is intubated and on dialysis in a critical care unit, it is important to establish whether ventilator settings are increased or remain the same. It will also be important to establish a time line for the use of the dialysis, particularly if the goal is to regain kidney function.
Seek to Address Emotional Needs of the Caregiver
Many of these steps have included empirical assessments, which can be useful in attempting to defuse emotionally charged situations. However, it is equally important to offer support to the emotional needs of those involved. Dealing with the death of a loved one stirs many emotions for any caregiver, but it might be said to be even more true for those that find themselves in situations dealing with medical futility. In these situations, perceptions of antagonism and feelings of abandonment may be amplified, adding to already complex emotions surrounding loss and death. Addressing these emotional needs can help to resolve other conflicts between family members or between the family or surrogate decision-maker and providers. Using terminology such as “futility” often gives rise to family discomfort and the assumption that the physician and clinical team have “given up” on the one the family loves. It is often helpful to use language such as beneficial and non-beneficial treatment in place of the term ‘medically futility.’
Be sure to utilize the expertise of chaplains, social workers and others with psychosocial training whenever possible. Often family members relate better to these professionals as they use different language and ask them to comment on different aspects of the patient such as spirituality and thinking processes.
We recognize that these steps will be easier to work through in certain situations and much more difficult in others. When physicians have solid relationships with families or surrogate decision-makers, these conversations might be easier or, because of how the relationship has progressed, these conversations may be particularly difficult. Based upon our own practice, we offer a few methods in which to work through these steps.
Patient Care Conference
Patient care conferences are often the optimal setting to discuss these steps. Getting the involved parties at one table to discuss the pertinent issues provides an opportunity for dialogue and needed clarification to any patient care situation. For situations of this nature, it will be important to gather the family or surrogate decision-maker and a member of the nursing staff with the physician leading the discussion. Many times, there has been a breakdown in communication that a meeting of this nature can help to clarify. When needed and available, contact your ethicist or ethics committee for assistance.
Review Steps with a Colleague
Cases that are perceived to involve ‘medical futility’ are often very trying for the physician. Reviewing the above steps with a colleague may help to draw out things that were missed or reinforce the need for further support. Discussing the medicine behind the case with another physician can help to provide an objective perspective to an otherwise polarized situation. It is also an opportunity to learn from those who have experienced similar cases.
Request an Ethics Consult
We encourage all of our physicians, and indeed everyone with direct patient care, to contact the ethics service when dealing with ethically challenging cases. These cases are particularly challenging, and we believe that our perspective can be helpful to physicians struggling with cases involving ‘medical futility.’ A physician may not wish to have another family meeting, either because it is not perceived to be helpful, or because previous meetings have been unsuccessful. It may also be that the physician has worked through these steps on his or her own, or even with a colleague, and simply wishes for an outside perspective. Regardless of the reason, the involvement of an ethicist, a small ethics team, or even guidance from a Clinical Ethics Committee may help the healthcare team better understand their roles and responsibilities to the patient, any policies or regulations on the issue of medical futility or inappropriate treatment, as well as their own rights as clinicians.
The issue of medical futility is often very challenging. Discerning the moment or time frame in which treatment has ceased to be beneficial is a challenging task in and of itself. When combined with the complexities of social dynamics and cultural differences, either between the healthcare team and the family or surrogate, or within the healthcare team itself, sorting through the issue of medical futility can prove to be daunting. Sensitivity and awareness to the intricacies of this issue are important to resolving this conflict when it arises. This paper has sought to highlight some of these intricacies and present steps and methods for working through the issue.
The suggestions provided here will not serve as a cure-all, nor are they meant to imply that by following them cases labeled as medically futile will cease to be a predicament. Instead, they represent strategies that have been employed in our practice and may prove useful in other settings. Perhaps most important to note, however, is that the issue of medical futility is often best resolved when caring clinicians work respectfully and firmly with families and surrogate decision-makers in doing what is best for the patient.