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The Ethical Obligation to Look Beyond Informed Consent

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Michael S. Malian, MD, FACS, MBE; Ana M. Tyler, JD, MA

A 79-year-old woman with a past medical history of hypertension, hyperlipidemia, and prior stroke presented to her pulmonologist with a progressive worsening dyspnea on exertion. She had a positive cardiac stress test and underwent cardiac catheterization, which demonstrated triple vessel disease. She was referred to a cardiovascular surgeon for myocardial revascularization. Her preoperative carotid ultrasound demonstrated a critical left carotid stenosis. She agreed to a dual procedure—triple coronary artery bypass graft and left carotid endarterectomy. An advance directive was in place granting her daughter durable power of attorney. The patient stipulated in her instructions that “I object to all life-sustaining treatments in all circumstances even if my doctors think they might help me.”

Her postoperative course was complicated by left-sided hemiparesis and encephalopathy, which delayed initial extubation. She also developed generalized subcutaneous emphysema after chest tubes were removed. Ongoing encephalopathy did not permit extubation. On postoperative day (POD) 7 she began to follow commands and met criteria for extubation. The cardiovascular surgeon prohibited the intensivist from proceeding with extubation because of concerns that the daughter would not permit reintubation if her mother failed extubation.

On POD 9 an ethics consult was requested by the vascular surgeon because ethical tension was developing between the daughter and the healthcare team (HCT). A meeting was arranged by the ethics consult service (ECS) the following day. The cardiac surgeon participated by phone. At the meeting the daughter expressed her frustration with communication among members of the HCT regarding her mother’s clinical progress. She expressed concern that her mother’s advance directive was not being respected. The cardiac surgeon was disturbed that an ethics consult had been called and emphasized the need for aggressive therapy including a tracheostomy and feeding tube to carry on with the patient’s care. He also suggested that a tracheostomy and feeding tube access might be necessary. The daughter was clearly distressed by the surgeon’s failure to understand her mother’s wishes in the context of her current clinical state. The following day, the surgeon spoke to the daughter, and they decided that all further decisions were to be deferred until POD 14. The patient continued to struggle clinically. She developed signs of pneumonia and fluid overload.

On POD 12 the nursing team and the daughter both witnessed the patient’s mouthing her desire to have the tube removed. The intensivist and cardiac surgeon were both adamantly opposed. The ECS was called urgently Exploring Ethics Readers are invited to submit cases that have led to ethical questions or conflicts, or those that caused moral distress. The Society of Critical Care Medicine Ethics Committee will solicit analyses authored by qualified ethics consultants with expertise in critical care environments. Through this process, we hope that readers will gain a better appreciation of ethical issues facing critical care clinicians, intensive care unit patients, and families or surrogates of critically ill and injured patients. We believe that readers will also develop a richer understanding of the role of healthcare ethics consultants and will become more comfortable using local ethics resources. The Ethical Obligation to Look Beyond Informed Consent because the daughter was demanding immediate extubation and comfort measures. The intensivist stated that this would be tantamount to euthanasia and requested more time and adherence to the plan for reevaluation on POD 14. The cardiac surgeon requested a psychiatric evaluation and denied extubation. Psychiatry felt the patient had capacity for medical decision making. Additionally, the ECS determined that the patient’s daughter was acting in her mother’s best interest and was therefore a suitable medical surrogate decision maker. Consequently, the ECS escalated the consult for administrative review. Upon review of the case, it was recommended that they request a different cardiac surgeon and intensivist who would honor the patient’s advance directive and remove her from ventilator support. She was transferred to different physicians and extubated She died approximately 12 hours later.

Conflict can occur when care recommended by healthcare professionals are not aligned with the values and preferences of the patient and/or family. In this case informed consent was obtained for a complex high-risk surgical procedure involving two surgical teams without sufficiently addressing patient preferences and documented advance directives. There is more to the documentation of informed consent than risks, benefits, and alternatives. Trust must be established. This entails cultivating a relationship with the patient and/or family that includes an understanding of patient values.

The patient stipulated in her instructions that “I object to all life-sustaining treatments in all circumstances even if my doctors think they might help me.” Arguably, this choice would have negated any surgical intervention had it been properly reviewed. Nevertheless, she was scheduled for surgery with no provision for addressing complications and prolonged postoperative care.

Complex high-risk surgical procedures often require high-level postoperative intensive care. Informed consent is a medicolegal document permitting the execution of a surgical procedure. It does not implicitly stipulate a timeline. Surgeons who perform high-risk procedures are understandably reluctant to withdraw life-sustaining therapy. Historically, they have sought to preoperatively negotiate a commitment to postoperative care. This concept, called “surgical buy-in,” entails an ongoing dialogue and negotiation that should include expected outcomes and should reflect careful consideration of patient preferences.

In this case there was no evidence that any preoperative discussion took place to address potentially burdensome postoperative therapy. Hence, there was no surgical buy-in. The complication of a postoperative stroke led to prolonged mechanical ventilation and pneumonia. The patient’s daughter witnessed her mother’s physical distress daily and struggled with the plan of care that challenged her mother’s advance directive. The constraints of the advance directive lead to the patient being kept intubated because the health care team feared extubation failure. The patient finally became responsive and signaled her desire for extubation even though the HCT did not feel she was quite ready for successful extubation.

It is not uncommon for patients to proceed to the operating room without a complete understanding of the risks and benefits of the planned procedure. In this case, the surgeons did not appreciate that the patient’s personal preferences were a barrier to full unhindered postoperative care. Had her advance directive been reviewed preoperatively, conflict may have been anticipated and negotiated. Trust becomes the binding agent in informed consent that permits the HCT to provide the necessary care for a successful outcome. However, it cannot be achieved through coercion or manipulation that denies the patient’s values or violates the patient’s preferences. The intensivist and surgeon both viewed extubation as an act of betrayal of their core values to preserve and sustain life, resulting in misalignment between the HCT and the patient. Surgical buy-in may have precluded this conflict and afforded an opportunity to extend postoperative care, which might have led to a more favorable outcome.

Patient- and family-centered care entails a partnership between the patient/family and the HCT that embraces and respects the patient’s values. Safe, high-quality treatment is not the only goal. The HCT must help patients and their families make rational healthcare decisions that align as closely as possible to their values and preferences. Respect for patient- and family-centered care cultivates trust between the patient/family and the HCT. This facilitates rational shared decision-making that ultimately delivers high-quality, high-value treatment and care.

In conclusion, surgical buy-in is an important step in any major surgical procedure. Surgical buy-in requires a detailed preoperative discussion outlining risks and the potential for burdensome interventions. Advance directives need to be queried, reviewed, and reconciled before obtaining informed consent. Establishing trust is the goal. Trust requires an understanding of, and respect for, the patient’s values and preferences. When tensions arise about conflicting values between the patient and the HCT, daily discussions serve to advance communication and understanding. The ECS may serve a valuable role in mediating any controversy or dispute. When both sides come to the table and a dialogue can be established, critical shared decision-making can take place that honors and respects the patient’s autonomy and minimizes potential harms. This constitutes the essence behind patient- and family-centered care.