“The Patient Is Being Pressured!” Coercion Versus Relational Autonomy

Abstract

Relational autonomy is a concept that describes the interdependent nature of decision making by individuals. Relational autonomy is distinct from the traditional concept of autonomy, which asserts the need for each individual to make choices based on their own values and without influence by others. We present a case in which a patient made decisions that appeared contrary to his own desires. The case raises questions about the line between appropriate and coercive family influence. We also explore the moral distress generated by the attempt to reconcile his expressed desires and the decisions he made. We propose that examining the case with a relational autonomy lens may have helped clinical staff understand his decision and thus mitigate moral distress.

Introduction

Autonomy is traditionally defined as an individual making decisions independent of the influence of others. Shared decision making prioritizes the relationship between the clinician and the patient as the foundation in decision making. However, patients frequently have relationships with family and friends that influence their preferences and ultimately the decisions they make; the patient/family relationship is sometimes conceptualized as a coalition on the patient side of the dyad.¹ Relationships between patients and their family may figure prominently in medical decision making. The types of influence are varied: a patient may value the wisdom of an aunt, and thus award her opinion a high level of credibility; another may care about how his illness emotionally impacts his daughter, and modify his choices so that her distress is lessened. Relational influence can also be coercive, as when a patient avoids disclosing information to clinicians because of fear of retribution from a domineering spouse. The concept of relational autonomy holds that while decisions emerge from the minds of individual persons, the content of these decisions is profoundly influenced by social relationships.²

Understanding the relational nature of patient autonomy and the impact relationality has on decision making in the medical context^3,4 provides a framework to reconcile these influences.

We describe a case that challenges the traditional application of the principle of respect for autonomy and provides an illustration of relational autonomy. We explore the influence that family had on a patient facing serious illness, and grapple with the confusion that resulted. We will discuss the concerns that arose regarding whether the family influence might be coercive. Lastly, we propose that developing an understanding of relational autonomy may mitigate moral distress in similar clinical scenarios.

Case Description

J.R. was a 70-year-old Caucasian man from Northern New England with a history of aortic stenosis who underwent a transaortic valve replacement. His postoperative course was complicated by atrial fibrillation with rapid ventricular response, treated with amiodarone. Unfortunately, he developed shortness of breath attributed to amiodarone toxicity. His hospital course was complicated by heparin-induced thrombocytopenia with clinical manifestations of deep venous thromboses, and a pulmonary embolus. At the time of presentation, his cardiologist and pulmonologist emphasized the potential reversibility of his condition, so he agreed to intubation. He emphasized his desire to avoid prolonged intubation or cardiopulmonary resuscitation if he continued to deteriorate. His wife and health-care power of attorney, LR, was present for this conversation.

Unfortunately, J.R. did not improve with ventilatory support, high-dose corticosteroids, and systemic blood thinners. Despite lack of improvement, there were differing opinions regarding the potential to wean from the ventilator and resume independent life, something which J.R. had stated was necessary to enjoy an acceptable quality of life. His wife agreed to pursue a tracheostomy after two weeks of mechanical ventilation while J.R. remained sedated. Once the tracheostomy was placed, sedation was successfully weaned and J.R. was able to communicate by writing.

During the ensuing weeks, J.R. frequently expressed to nursing staff that he wanted to “be done” and that he was “ok with dying.” These statements were made in the evening without family present. Notably, he seemed to lack any ambivalence regarding his desires and would mime pulling the ventilator tube out. However, during the day and in the presence of his family, J.R. would agree to remaining on the ventilator, citing a hope for recovery. This observed oscillation led clinical staff to question whether continued mechanical ventilation respected J.R.'s autonomy, and given the perception of a diminishing chance of success caused distress among staff. Palliative clinicians and clinical ethicists were consulted to evaluate the patient's wishes and clarify goals of care.

Palliative clinicians and ethicists met with J.R., with his family, and with J.R. and his family together. J.R.'s family strongly felt that J.R.'s statements of wanting to be “done” were expressions of frustration and loneliness and did not reflect his true wishes. In meetings with J.R. and his family together, J.R.'s wife was adamant that he not “give up.” J.R. admitted that his family's wishes influenced him to continue aggressive care but also expressed a desire for limits (e.g., “I'll try for one more week”). In addition, the palliative clinicians and ethicists met with J.R. alone after these family meetings, during which J.R. corroborated his family's conclusion that his comments overnight were reflections of momentary frustrations.

Nevertheless, his private statements to nurses overnight continued to express a desire to withdraw life-sustaining treatment, which led to confusion and concern for coercion. Concern was heighted by his wife's requests and behaviors: she asked that staff not meet with J.R. alone; she reported that she spoke with him about his wishes over the weekend, so there was no need for physicians to talk with him today; she accused nursing staff of manipulation to elicit statements from him.

The palliative care and ethics team engaged J.R. in open discussions about his stated preferences changing based on family presence. We set the expectation that clinicians could not be expected to follow two opposing treatment plans. We normalized the ambivalence but clarified that we needed a consistent plan to follow and that J.R. was the ultimate authority. We also explained inconsistent directives defaulted to continuing life-sustaining treatment. Most controversially, we told J.R. he should inform his wife if he truly wished to stop LST in favor of a comfort-focused plan. This was done in the context of the daily involvement of his wife and family in rounds, her accusations that hospital staff were encouraging the patient to forego LST, and the fact that she would become his surrogate decision maker should he (again) lose capacity.

Ultimately, J.R. chose to continue life-sustaining treatment, stating that he had come this far and did not feel the burdens of continuing aggressive care outweighed the harm that would occur to his relationship with his wife. J.R. remained full code because the medical team determined that CPR was not futile in the strict sense of having virtually zero chance of prolonging life. Ultimately, J.R. suffered a hemorrhage, went into cardiac arrest, and after a few minutes of resuscitation efforts by the medical team, and at the recommendation of the care team, J.R.'s wife agreed to stop CPR.

Discussion

Respect for individual autonomy is a prominent concept in clinical bioethics.⁵ Respect for autonomy was a response to paternalism by physicians who historically made decisions about their patients' medical treatments with minimal input from the patient. The traditional, legalistic approach to autonomy has been criticized for flaws related to the abstract and universal nature of the principle.⁶ Such a concept of autonomy, views a decision as flowing solely from the rationality of the individual. It envisions a decision that is consistent with universalizable moral rules and fulfills a patient's own particular desires. This version of autonomy fits well with the American ideals of self-reliance and independence.

The understanding of autonomy has shifted away from an emphasis on respect for the patient's right to avoid unwanted interference from others,^7,8 to a more transactional approach in which emphasis is placed on respect for the patient as an agent who shares in their own medical decision making.¹ However, a fully autonomous decision need not be made independently and in isolation from other people, nor does a fully autonomous person need to ignore the desires of others.³ While it is important to respect the autonomy of the patient, and protect patients from paternalistic and coercive forces, we must also consider the patient's relationships and how these (appropriately) influence decision making. Interpersonal connection and social relationships ground our sense of identity and wellbeing, and these become particularly important during serious illness. Relationships also often involve compromises in decision making. For example, I might agree to treatments that I feel ambivalent about because it satisfies the desires of another with whom I am close.

An agent can fully endorse a “second best” choice because of the value he or she places in the relationship. In a relational model of autonomy, patient values, preferences, and identity are “fundamentally dynamic, continually constructed, and reconstructed in dialogic processes with other people… Being autonomous is not perceived to be in conflict with valuing the input of others or engaging them in important decisions.”⁴

Most medical providers were trained in traditional notions of autonomy, prioritizing a rational, fact-based approach to decision making. This is often in direct opposition to the emotion-driven complexities of how many people with serious illness make decisions. Relational autonomy, as articulated in feminist literature^9,10 attempts to unite emotion with reason. The claim is that we are both rational and embodied, emotional beings, and thus integrate these aspects of our identity into our decision-making processes. Identities are embedded and informed by our social relationships. We are interdependent beings (for better or for worse) and we all exist only in relation to others. If we take this view of the individual, then, “Being autonomous is not perceived to be in conflict with valuing the input of others or engaging them in important decisions.”⁴

J.R. was clearly engaged in a relational approach to medical decision making. While normalizing J.R.'s ambivalence, the team collaborated with J.R. to make a choice on one path, which ultimately seemed governed by his wife's wishes. Given the concern about the possibility of coercion on the part of family, how does the care team determine whether a decision is due to manipulation by others versus the autonomous although relational preference of the patient? We propose the following considerations:

• Is the patient's experience one of undue pressure from family?

• Does the patient feel the need for assistance in communicating with their family?

• Does the patient wish to have a member of the medical team advocate on his behalf with family members?

We used this approach to assess the validity of this concern. In conversations with J.R., he denied feeling undue pressure from his family and declined the offer for assistance in communicating with his family. He similarly did not feel that he needed help advocating for him. Daily visits without his wife present were conducted as an ad hoc safeguard to protect the patient's status as the locus of autonomous decision making, while respecting his desire to make decisions in the context of his relationship to his family.

Patients who choose continued treatment despite a poor prognosis can be challenging for clinicians. Studies consistently show that intensive care unit staff experience high levels of moral distress when they care for patients they perceive as receiving inappropriately burdensome care.^11,12 Moral distress can be described as the feeling that arises when one is constrained from performing an action one believes to be morally correct.^13,14 In our case, there are two potential sources of moral distress: staff believe that they are providing inappropriately burdensome care and staff believe that the patient's genuine wishes are not being respected because his wife is pressuring him. At the very least, J.R.'s oscillation between dramatically different choices made it difficult for the care team to feel confident they were abiding by his preferences.

We believe this case exemplifies the need to broaden the spectrum of autonomous decision making to include the influence of patient relationships on decisions. It was clear the medical team was unfamiliar with the concept of relational autonomy. Expanding our understanding of individual autonomy to allow for family influence on an individual's decisions provides a cognitive and ethically sound framework for understanding patient decision making. Furthermore, care team understanding of relational autonomy should decrease moral distress among care team members.

More research is needed to conceptualize and understand the dynamics of patients and families in their decisional processes. Our proposed framework for discerning relational autonomy versus coercion should be tested in a variety of clinical scenarios. Further study is needed to understand if education about relational autonomy might mitigate moral distress. If helpful, this framework could ensure provision of ethical patient care, while mitigating moral distress among care providers.

Funding Information

F.C. is supported by a grant from the National Institutes of Health, Center of Biomedical Research Excellence in Acute Care Research and Rural Disparities, FAIN P20GM139745.

Author Disclosure Statement

No competing financial interests exist.