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CURRENT CONTROVERSIES IN CRITICAL CARE |
As the latest offering in the discussion of family presence in critical care units, a review of research on the presence of patients’ family members during cardiopulmonary resuscitation was recently published. By organizing the literature in this review on the basis of the ethical perspectives of the researchers, the author, Margo Halm,1 locates the discussion of family presence in the realm of ethics and values. Of the 28 research reports she reviewed, 23 supported family presence during resuscitation by arguing from a utilitarian (teleological) stance that allowing family presence is the right action because it results in more overall benefit than does not allowing family presence. In response to the suggestion that family presence can be defended by a utilitarian argument, I would like to unpack some of the basic tenets of utilitarian theory, discuss its appeal as the basis for a normative healthcare ethics, and describe the problems inherent in this approach as an argument for family involvement.
Background to Utilitarian Theory
Act utilitarianism is an impartial moral theory that defines right action as that which results in the best state of affairs or the "greatest good for the greatest number." In an evaluation of alternative actions, one arguing from utilitarian theory takes into account only the outcomes each action will produce, weighs the good contained in the outcomes, and concludes that the right action is the one that produces the most good. That utilitarian theory is impartial means that those subscribing to utilitarian views must give equal consideration to all participants in any given situation and be ready to give up personal commitments if doing so means producing an overall better state of affairs. The benefit to any individual, whether a family member, a patient, or a healthcare provider, counts no more than any other.2,3
Utilitarian theory has made gains in healthcare ethics partly because of its seemingly objective stance that relies on rational calculation to adjudicate morally weighty questions. Application of utilitarian theory to the question of family presence during cardiopulmonary resuscitation seems to be a fairly simple exercise: if the state of affairs produced by allowing family members to be present is better than the state of affairs produced by excluding family members, then the right action is to allow family members to be present. In response to this conclusion, it would then seem reasonable to write hospital policies and/or rules that allow family members to be present and require that they be offered the option. These sorts of rules transform act utilitarianism into rule utilitarianism without altering the basic requirement of maximizing benefit.2,3
Utilitarianism in the Critical Care Environment
Utilitarianism provides an appealing framework with which to approach the moral problems of health-care because it parallels science and fits comfortably with the current push in medicine and nursing toward evidence-based practice. In clinical practice, interventions that can be based on evidence acquired through research are preferred to those that have little or no evidential support. Utilitarianism, like the evidence provided by outcomes-based research, requires a separation of means and ends with an emphasis on ends. Allowing family members to be present during cardiopulmonary resuscitation is a means by which an outcome, described in terms of a rational calculation of foreseeable benefit and burden to all participants, will be produced. Of prime concern in a utilitarian view of ethics is the end that is produced by the action or means, not the means as such, and reliance on rules derived from a utilitarian calculation gives us a feeling of solid ground under our feet.
The research in Halm’s review1 seems to support family presence during attempted cardiopulmonary resuscitation by providing evidence of the good (outcome) that allowing family members to be present (intervention) produces. The perceived benefits described in the literature outnumber the perceived risks, thus making family presence a right action similar in many ways to an evidence-based intervention. Although, as Halm1 points out, there are many gaps in the research, there is some evidence to recommend allowing family presence during resuscitation as an intervention that can promote family education, reduce family anxiety, and facilitate grieving, among other benefits.
Two obvious questions that come out of an instrumentalist, utilitarian perspective are, what counts as good and, related to this, how do we compare goods? In applying utilitarian ideas to healthcare ethics, many take the position that there are goods that are universal, similar to the primary goods Rawls’ discusses in his theory of justice.5 Continued productive lives free of disease, disability, and pain, for example, are goods on which all sentient beings are likely to agree. These are the goods on which critical care services focus. Once we open the discussion to include less obviously universal benefits, consequences become less and less easy to calculate. In any discussion of an individual case, a great deal of complexity is often involved in accounting for all foreseeable benefit and harm to all involved.
This point brings up another question: that of how far into the future we ought to look to cover all foreseeable benefit and harm. A utilitarian might recognize an action as the right action if we can anticipate and convincingly describe future goods associated with it that tip the immediate balance. Depending how far into the future we look, a given action might be construed as good or bad.
In critical care units, much of the focus is on individual rescue, with the critical care team as the independent agent of rescue. The circumstance of resuscitation is one in which the team’s full attention is directed toward the individual patient. If we commit to a utilitarian stance toward family presence, space might be made available to the family if family presence can be demonstrated to be useful by making a positive impact on outcomes that all involved can agree are good.
To illustrate how a utilitarian strategy might be employed, take the following example. Suppose a patient’s husband wants to be present while an attempt is made to resuscitate his wife. The 2 physicians, 3 nurses, and 1 respiratory therapist involved in the resuscitation are distracted and made uncomfortable by the husband’s presence. Because of this, the team makes an error that contributes to the patient’s death. The chance that being present during the resuscitation may have contributed to the husband’s education, reduced his anxiety, or facilitated his grieving seem not as important as the harm done to the patient and the discomfort endured by the other participants; the husband’s presence in this particular circumstance was a wrong action. Thus a utilitarian calculation can lead us to exclude families as easily as it can lead us to allow their presence. If we speculate about all the possible benefit and harm in each situation, we might be tempted to close the doors of the critical care unit to patients’ families as a prevention strategy. If we wait to obtain enough evidence to support the idea that family presence results in overall benefit, we may never open the doors at all.
Family Presence From Another Perspective
Reducing family presence to a means encourages us to take up an instrumental view of family relationships and a technological understanding of healing.4 In this view, the process of healing is not important; the only important concern is achieving a good outcome. But the question of allowing family members to be present in the critical care unit at all, whether during emergency or routine procedures, is more a question of basic values than it is of outcomes. In the example given earlier, the utilitarian evaluation of benefits began with no assumptions about the appropriateness or inappropriateness of family presence. From this objective stance, no judgment was made about the discomfort experienced by the physicians, nurses, and respiratory therapist who made up the resuscitation team, and the bad outcome could have been avoided simply by excluding the husband. If instead we begin from a position that already values family involvement, the team members’ discomfort is the problem.
We know that having a family member present can help orient a fearful patient as she wakes from anesthesia, give courage to a patient as he endures the pain of placement of a central catheter or removal of a chest tube, and give nurses, physicians, and respiratory therapists a better understanding of the patient as a person who is enduring life-threatening illness. It seems reasonable that these kinds of benefits would also be possible if patients’ family members were present during cardiopulmonary resuscitation. These benefits are not outcomes that can be reliably predicted, calculated, and compared; they have to be appreciated as an inseparable part of a caring practice that attends to particular patients in particular situations and that accounts for the nature and importance of family relationships.
Reconnecting Means and Ends, Patients and Families
What will it take for families to have a consistently involved place in the care of their loved ones in critical care units? In my opinion, it will take a shift in the focus of healthcare in general and critical care in particular, away from reliance on rational calculation as the answer to every problem and away from the view of patients as individuals who can be separated from their families. The utilitarian view suggested by the research in Halm’s review starts with the assumption that families should be excluded unless we can show that their presence results in a more beneficial outcome. This approach is in keeping with the focus of acute care—on the individual and on individual rescue. In this view, the individual patient is seen as the only appropriate focus of care, and efforts are made to be sure this focus is not distracted by family.
Family is seen as a distraction and, at times, as an overt problem in many critical care units. This situation is especially apparent in care of adults and is guided in part by concerns for privacy and confidentiality, but also by an unrealistic understanding of individuals as radically free decision makers. Critical care physicians and nurses talk about the importance of focusing care and decision making on the individual patient rather than on the patient’s family and encourage family members, when they are involved in end-of-life and other treatment decisions, to do the same. Family members are at times thought to have "too much influence," a line of thought that makes it seem appropriate to exclude the family in the hope of promoting the individual patient’s "true" choice.
This stance of pure individualism and radical freedom does not account for the primarily dialogical and socially embedded nature of the self and imposes radical aloneness as the norm for human choice.6,7 To subscribe to the idea that the critical care team alone can provide a cure while treating the patient as a radically free individual is a dangerous mistake that denies the curative influence of the family and the importance of the patient’s involvement in family relationships. These are some of the ideas that underlie the search for an acceptable reason to let the family into the cure-focused environment of the critical care unit instead of accepting family presence as an end in itself.
As much as the nursing literature tries to help us see family care as an important part of our work, rarely is true family-centered care provided in a critical care setting. It is still too often the case that critical care providers talk of family care as an abstract sentiment while overlooking the need to develop the caregiving skills and practices with which to embody true concern for the family and for the patient as part of a family.4 This situation, coupled with the overemphasis on rational calculation of outcomes and fear that involving families will overshadow the individual patient’s choice, keeps the critical care unit in many ways closed to families. It is true that we can never know for sure what kind of relationship any given patient has with her or his family, whether the family wields too much or the wrong kind of influence, or what the patient might decide were the family not present. But some issues can be dealt with only by diving into the complexities of human relationships with all the contingencies and under-determinedness they hold. If we begin by approaching the patient as a person who lives as part of a web of relationships with family and community, we will be starting from a more humanistic perspective.
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