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Family presence during cardiopulmonary resuscitation: who should decide?
  1. Zohar Lederman1,
  2. Mirko Garasic2,3,
  3. Michelle Piperberg4
  1. 1Yale Interdisciplinary Center for Bioethics, New Haven, Connecticut, USA
  2. 2Center for Human Bioethics, Monash University, Melbourne, Australia
  3. 3Center for Ethics and Global Politics, LUISS University, Rome, Italy
  4. 4Department of Theoretical and Practical Philosophy, Faculty of Philosophy, University of Barcelona, Barcelona, Spain
  1. Correspondence to Zohar Lederman, Institution for Social and Policy Studies, Yale Interdisciplinary Center for Bioethics, PO Box 208293, New Haven, Connecticut 06520-8293, USA; zoharlederman{at}gmail.com

Abstract

Whether to allow the presence of family members during cardiopulmonary resuscitation (CPR) has been a highly contentious topic in recent years. Even though a great deal of evidence and professional guidelines support the option of family presence during resuscitation (FPDR), many healthcare professionals still oppose it. One of the main arguments espoused by the latter is that family members should not be allowed for the sake of the patient's best interests, whether it is to increase his chances of survival, respect his privacy or leave his family with a last positive impression of him. In this paper, we examine the issue of FPDR from the patient's point of view. Since the patient requires CPR, he is invariably unconscious and therefore incompetent. We discuss the Autonomy Principle and the Three-Tiered process for surrogate decision making, as well as the Beneficence Principle and show that these are limited in providing us with an adequate tool for decision making in this particular case. Rather, we rely on a novel principle (or, rather, a novel specification of an existing principle) and a novel integrated model for surrogate decision making. We show that this model is more satisfactory in taking the patient's true wishes under consideration and encourages a joint decision making process by all parties involved.

  • Applied and Professional Ethics
  • Autonomy
  • Care of the Dying Patient
  • Clinical Ethics
  • Rights

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Introduction

In this paper, we discuss whether to allow family members, defined as anyone who has a close relationship with the patient, to be present during their loved one's resuscitation. We explore the issue mainly from the patient's perspective and address the following question: if the patient undergoes cardiopulmonary resuscitation (CPR) and has not expressed any preference regarding family presence, who should decide and on what moral grounds? We presuppose the patient has not communicated a request regarding family presence during resuscitation (FPDR) in his advance directive. Advocates of FPDR usually invoke the Autonomy Principle (AP) and argue the patient has a right to have his family present. Some invoke the Beneficence Principle (BP) suggesting that FPDR increases survival rates. In contrast, opponents of FPDR invoke the AP or BP, arguing that FPDR undermines the patient's best interest. Here we advance a new, more individualised model of decision making, the Integrated Model of Surrogate Decision Making,1 which differs from the current one in two ways. First, according to the new model, decisions should not be made solely by one party, be it the patient, the patient's family or the physician, but rather by all parties involved. Second, physicians should ascertain the patient's values and beliefs and offer their recommendation accordingly. The paper includes three parts: first, we describe the relevant medical literature; second, we discuss the topic within the framework of the AP and the BP; and third, we analyse the topic within the framework of the proposed model.

Before we turn to the core of the discussion, some remarks are in order. The goal of CPR is to minimise cerebral damage and reactivate a heart that has ceased functioning appropriately. Despite great advances in medical technology and knowledge, the best estimates suggest a 22% survival rate to hospital discharge in case of inhospital CPR, and much less in prehospital CPR.2 ,3 In light of these poor survival rates, issues of social medicalisation, futility, resource allocation and patients’ dignity have been raised, and one author even suggested approaching cases of CPR differently according to estimated trajectories.4 The ethical dilemmas regarding CPR are further amplified by anecdotal reports of patients who are aware of their environment while undergoing CPR.5 ,6 These issues should be considered in the debate over FPDR, but we will largely ignore them in this paper. No evidence supports the claim that FPDR raises or lowers CPR survival rates. Therefore, we mention survival rates only as an example of a potential benefit; only empirical data can assess the effects of FPDR on survival rates.

Part I: medical literature

The debate over FPDR first came to the fore in 1982, when two family members separately insisted on witnessing their loved one's CPR in Foote hospital in Jackson, Michigan.7 Since then, FPDR has become a contentious topic among healthcare professionals (hereon, only professionals). Authors have investigated FPDR prospectively or retrospectively through the standpoints of three groups: professionals, family members and patients. Among professionals, who mainly oppose FPDR,8–18 nurses tend to favour FPDR more than physicians10 ,19 and experienced physicians tend to favour FPDR more than inexperienced ones.9 ,13 ,20 ,21 Interestingly, most professionals want to be present during the CPR of their own loved ones.22

Among family members, most would like to witness their loved one's CPR and, among those who have already witnessed their loved one's CPR, most would do it again.6 ,7 ,9 ,11 ,21 ,23 ,24 Few prospective studies have examined the attitudes of patients toward FPDR, and, given low survival rates, fewer retrospective studies could examine their attitudes after a successful CPR.7 ,10 ,13 ,23 In a study by Robinson et al,23 three patients who survived CPR felt supported by their family's presence. In another study, 72% out of 200 patients wanted their family present in case of a cardiac arrest. However, some wished only certain family members to be present.25 Finally, some studies recommend including the option of FPDR in advance directives.7 ,9 ,12 ,22 Some argue that FPDR is simply the patient's and family's right.9 ,12 ,20 ,22

According to Nibert, ‘[a] moral conflict exists because two opposing obligations collide: an obligation to the family members who desire to be present with their loved one during CPR and an obligation to the healthcare providers who do not want patients’ family members to witness resuscitation efforts.’8 Timmermans further elaborates that ‘… in the ED [emergency department] the opportunity to make relatives and friends full-fledged partners in decision making and terminal care is often lost because the need of the institution to thwart malpractice lawsuits, the stimulus of the medical professions to maintain the official jurisdiction over death, and the impetus of the emergency system to save all human lives at all costs take precedence over the needs of the people who are the most affected by sudden death.’26 Those people are the family members who must cope with the loss of their loved ones. Critchell and Marik believe the most important question should be ‘what does the patient want?’20 The 1996 report by the UK Resuscitation Council summarises: ‘finally it must be the patient's welfare that remains the prime consideration.’5 In 1999, Walker discussed the family's right to be present during their loved one's CPR in the context of the AP and concluded that family presence is justified both from Kantian and neo-utilitarian viewpoints of autonomy.27 In these publications, the patient's right entails allowing FPDR. However, in another study, the author argues that the patient's right to personal dignity is undermined by FPDR, and asks, ‘would patients prefer that their relatives remember them when they were well, rather than remember them lying exposed on a bed with the arrest team dispassionately performing a variety of aggressive and invasive procedures on them?’18 Similarly, Helmer et al28 contrast the right of the family to be present with the right of the patient to ‘optimal care, confidentiality, and privacy,’ concluding that the last overrides the family's right.

The 2010 American Heart Association guidelines for ethics in CPR provide an illustrative example of the moral tension between the right of the patient and the role of professionals. The guidelines state: ‘[i]n the absence of data documenting harm and in light of data suggesting that it may be helpful, offering select family members the opportunity to be present during resuscitation is reasonable and desirable (assuming that the patient, if an adult, has not raised a prior objection).’29 Which ‘select family members’ should be included, and who should be the selector? Assuming that the guidelines implicitly designate the selector to be a professional (social workers included), would this right not override that of the patient? We presume that the patient undergoing CPR has not expressed any wish to allow his family to be present. Who should make that decision, and on what moral grounds? We present a systematic analysis of this theme within the framework of the AP.

Part II: The ‘usual’ arguments

The Autonomy Principle

Beauchamp and Childress place the AP with three other principles as the four normative pillars of bioethical discourse: beneficence, non-maleficence and justice.30

Relying on their approach, the patient is granted by the AP the right to an informed choice of medical treatment as long as he is sufficiently competent to make decisions without coercion or under the influence of others. In some cases, as during CPR, the patient is incompetent, and therefore cannot make any decisions. Childress and Beauchamp30 elaborate on this principle providing a two-step framework of standards for surrogate decision making in case the patient has not provided an advanced directive, for example, a living will or a durable power of attorney. They accept two criteria: the Pure Autonomy Standard and the Best Interest Standard. According to the first, designated by some as the Substituted Judgment Standard,1 ,31 family members should interpret the patient's current wishes according to his past actions and decisions, as if they were asked ‘if the patient could have made a decision, what would it have been?’ This judgment is usually relayed to professionals through relatives, perceived to be the most familiar with the patient's past decisions. The second standard would be used in case the patient's relevant preferences cannot be known due to lack of past relevant decisions or of relatives who possess that knowledge. According to this standard ‘…a surrogate decision maker must determine the highest net benefit among the available options’ (p.138).30

The two-step framework for surrogate decision making should be considered as part of a Three-Tiered Decision Making Process. First, the patient should be treated according to his advance directives. Second, in case the latter does not exist or relevant information could not be found, professionals should take recourse to the Pure Autonomy Standard. Third, in case the latter cannot be exercised, the Best Interest Standard should be implemented.

Applying the Three-Tiered Decision Making Process, we need to affirm that any patient undergoing CPR is incompetent. First, professionals should follow specific instructions given in advance directives, which possess the ultimate authority to determine who will be present during CPR. In case such instructions exist, there is no need for professionals to establish who is a ‘select family member.’ Second, if there are no relevant instructions, professionals need to ask relatives, ‘would the patient have wanted to allow you (his relatives) to witness his CPR?’ and accommodate them accordingly. Third, in case there is a lack of relevant past decisions or a lack of capable relatives who could relate that information, a surrogate decision maker should decide according to the perceived best interests of the patient.

From our discussion thus far, a strong case could be made in favouring FPDR according to the decision making process outlined above. However, as Sulmasy and colleagues32 and others31 ,33 ,34 demonstrate, empirical data counteract both the morality and practicability of this model. Family members often lament of emotional stress when expected to function as surrogates for their loved ones, begging the question whether it is morally justified to expect them to do so. From a practical perspective, many difficulties arise: First, only few patients have advance directives, and even when they do, these are commonly ignored by professionals. If patients do have advance directives, and these include information that may be slightly relevant to FPDR, that information tends to be too vague or too specific; it might be difficult for patients to dictate specific wishes regarding end-of-life care in advance and they may change their minds. Also, patients may prefer to provide their surrogates some flexibility in following their advance directives. Second, family members can predict their loved one's wishes at the end-of-life with only a relatively low accuracy. Third, in assessing the patient's best interests, family members may confound the perceived values of the patient with their own worldviews.

Thus, Sulmasy and Snyder deem the Autonomy Model of Decision Making inadequate and instead offer one that considers the specific clinical circumstances and the patient's unique characteristics.1 Before turning to the new model, we examine the applicability of the BP.

The Beneficence Principle

Beauchamp and Childress30 define beneficence as including three norms: the obligation to prevent harm, the obligation to remove harm and the obligation to promote good. They acknowledge that in certain cases the patient's best interests could only be guaranteed if we temporarily suspend the patient's autonomy and act solely according to the BP. This assertion leads to a discussion of paternalism, which is relevant here since many opponents of FPDR purport to promote the patient's care, dignity and privacy by excluding the family. They recognise two forms of paternalism. Soft paternalism constitutes overriding another's autonomy for the sake of achieving a greater beneficial value identified as such by all parties involved. Hard paternalism constitutes overriding another's autonomy for the sake of achieving a greater beneficial value identified as such only by those who perform the act of suppressing another's autonomy.

Accordingly, opponents of FPDR argue that in some cases, such as CPR, the AP conflicts with the BP. It is soft paternalism if the outcome valued the most by both the patient and professionals is the survival of the patient. The two parties might disagree on the best means to achieve that outcome; the patient might believe that having relatives present will increase his chances of survival, while professionals might believe that having the family present could potentially jeopardise his chances of survival. It is hard paternalism if the patient wishes relatives to be present because he believes it will benefit them, perceiving their well-being as the most important outcome, while professionals maintain that the most important outcome is the survival of the patient, which they believe will be maximised if relatives are excluded.

There are good reasons to be suspicious of medical paternalism, but occasionally in medical practice the circumstances justify its use. One justification is that while medical paternalism implies the superiority of medical judgement over that of the patient, it undermines only temporarily the will of the patient until his true autonomy is restored. A second justification goes back to the difficulties that arise from implementing the Three-Tiered Decision Making Process.

Do these two justifications provide professionals the moral legitimacy to deny FPDR in the name of the BP? The first one, if acceptable, is certainly a required condition, but not a sufficient one, mainly because the patient may never regain his autonomy and so he may never be able to reverse the medical decision. The second justification is also legitimate, since it is based on empirical data.

Thus, on one hand, it seems that respecting the AP would mean placing the decision whether to permit FPDR in the hands of the patient or his family. On the other, opponents of FPDR claim that a consideration of the patient's best interests overrides his autonomy, framing their argument as soft or hard paternalism. Unfortunately, as discussed by Daniel Callahan,35 medicine cannot be considered to be value-free; its applications, priorities and taboos are deeply embedded in the governing power. Accordingly, in some cases, the invocation of the BP should not be taken at face-value; frequently we find that professionals respect a patient's decision only insofar as it correlates with their own judgment. Therefore, professionals might oppose FPDR because it clashes with their own worldviews, rather than their concern for the patient's best interests.

Additionally, medical science may not necessarily be the best tool for discerning the patient's best interests. Considering the grim CPR survival rates, and acknowledging that professionals performing CPR commonly know their patients only superficially, one should wonder to what extent should decision making rely on the prospective of the patient's survival.

Thus, we have identified several potential difficulties in applying either the AP or BP in the context of FPDR. In the next section, we discuss another model which seems to be more satisfactory in the case of FPDR.

Part III: the Authenticity Principle

Ronald Dworkin distinguishes two kinds of criteria used in decision making: Experiential Interests and Critical Interests. Decisions based on experiential interests account for the patient's present preferences and future expectations in light of future quality of life. Decisions founded upon critical interests entail a more holistic approach, considering personal values and past and future experiences. Whenever decisions are made based on the AP, they should be consistent with a conception of the integrity of a person's life.36

Daniel Sulmasy shares Dworkin's assertion and emphasises the importance of a holistic, integrated view of one's life when addressing end-of-life issues.37 In light of the limitation of the Three-Tiered Model for Decision Making, Sulmasy and Lois Snyder propose a model based on an ‘Authenticity Principle’, which could be treated as a subset of the AP as it places the final decision in the hands of the patient and relatives. According to this model, any medical decision making process should not be solely that of the patient, the patient's family or the physician. Rather, it should be a shared, dialectical process between the different agents involved, as exemplified by the following: ‘[o]ur physicians involve the family in the decision making process and elicit the wishes of the patient from them. If resuscitation efforts are deemed futile, the family members are told so and they are given an opportunity to be part of the decision to cease efforts.’1

Sulmasy and Snyder introduce the standard of Substituted Interests and propose an Integrated Model of Surrogate Decision Making. While substituted judgment requires us to ask the family what would the patient have wanted, substituted interests requires asking the family ‘tell me about the patient.’ Family members should be encouraged to provide professionals relevant information regarding the patient's beliefs, moral and religious values, and so on, with the aim of uncovering his ‘authentic’ convictions and preferences. Importantly, family members would not be the sole decision maker; they will provide valuable information to the professionals who in turn would provide their recommendations to the particular case.1

Sulmasy's integrated model seems to address the limitations of the Autonomy-based Three-Tiered Process and the BP in the context of FPDR. First, it lessens the possibility of soft or hard paternalism which might occasionally be used by professionals, thus also reducing the risk of confounding the patient's best interests with their own worldviews. Second, inquiring about the patient's character as a whole, rather than presenting only one question which requires a cleat-cut reply, might prevent cases in which the patient's true wishes may be misrepresented by his family, and reduce the emotional stress experienced by family members who act as surrogates. Clearly, it could be argued that within this new model family might provide false information in replying to the request ‘tell me about the patient’. However, since this request is more general than the question ‘what would the patient have wanted,’ we believe it is less likely to misrepresent the patient.

Even in the case of CPR, when rapid and efficient action arguably determines life and death, we believe that it is reasonable for professionals to approach the family and briefly ask them about the patient. Both open-ended questions, such as ‘tell me about the patient,’ or narrow questions, such as ‘did the patient involve his family in important decisions during his lifetime?’, could be used. Arguably, one might posit that an active resuscitation is no time for any discussion that is not essential, however brief it may be. We have three replies. First, given the poor chances of surviving CPR, we argue that a great deal of attention should be devoted both to the patient's well-being and to the patient's family who would eventually suffer most over his loss. Second, even if there is no time to approach the family members during CPR, there is no reason why excluding them should be the default practice rather than allowing them into the room. Once we find agreement on this, professionals might be encouraged to include time during protocol to discuss the matter with family members and ascertain whether the patient would have wanted them present. Third, it is the experience of one of the authors to suggest that, often, there is enough time during CPR to conduct a brief discussion with the family as described.

Limitations of the new model

In line with our discussion so far, we believe that the Substituted Interests Standard based on the Authenticity Principle relies on strong philosophical and practical grounds, and that it is the preferred model to use in medical decision making regarding FPDR. Importantly, the Integrated Model overcomes some of the shortcoming in the traditional way of applying the AP. However, there are some caveats, several of which we have already briefly mentioned. First, the limitation of time is one aspect that goes against it; in instances where a decision is to be taken urgently, as in the context of CPR, it is impractical to conduct a protracted discussion with family members. This would likely discourage professionals from accepting the authentic model and from providing the family with sufficient preparation before allowing them into the room. Even so, and in line with our three replies above, family members should be properly informed about CPR procedures and possible psychological implications.23 Second, there is no objective way by which professionals could evaluate the information received by the family and make decisions accordingly. Moreover, family members might not provide all the necessary information relevant to the appropriate decision. Rather, the decision making process is likely to be conducted by some member of the staff and, as such, some aspects of subjective interpretation both by professionals and relatives remain. However, this combined decision making might represent the patient's true wishes, as Sulmasy and colleagues argue, ‘[m]ost patients would opt for a mixture of substituted judgment and reliance on the opinions of their physicians and loved ones about their best interests.’32

Conclusions

In this paper, we took the patient's perspective and examined how different normative principles, and certain specifications of these principles, may lead to various decisions in the context of FPDR. We reiterated the Three-Tiered Decision Making Model—a specification of the AP—and concluded that it is unsatisfactory due to various reasons, such as the inadequacy of advance directives, the potential of the Pure Autonomy Standard to cause increased emotional stress in family members and the confounding of the perceived values of the patient with those of family members required to make a decision based on the Best Interest Standard. We then discussed the BP and the two kinds of paternalism, and argued that without knowing the patient's background, it is hard to see how healthcare professionals could evaluate the patient's best interests with any confidence. Also, since our concept of autonomy is not value-neutral and since some professionals might, consciously or unknowingly, act according to their own worldviews, their claim to accommodate the patient's best interests in the case of FPDR may be misleading, and may not reflect the patient's true wishes and best interests. Rather, we assert that Sulmasy's Integrated Model of Surrogate Decision Making overcomes some of these difficulties. According to this model, healthcare providers should approach relatives during CPR and briefly ask them about the patient. Then, if both professionals and family deem it fit for family members to be present in the room, the team should describe to them in detail the entire process and guarantee they know what to expect.

Acknowledgments

We would like to thank Shmulik Lederman, PhD, Steve Campbell, PhD, Walter Frenn, PhD, Margo Halm, PhD, RN and last but not least Jessica Hanser, PhD, for their helpful criticism and suggestions. The errors in this manuscript remain solely ours.

References

Footnotes

  • Correction notice This article has been corrected since it was published Online First. The second author's affiliations have been corrected.

  • Contributors The three authors of the manuscript, MG, MP and ZL, are the sole contributors of the manuscript. All authors had an equal part in the planning, writing and reviewing of the manuscript. ZL is the main author who is responsible for the overall content.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.