Waiting for a Miracle

Paul R. Helft, MD

Consultations in Ethics

I was recently consulted concerning a patient in the ICU at my hospital with advanced breast cancer, but I soon realized there were much larger issues at stake. This woman is in her 50s and was diagnosed approximately 1 year ago with metastatic triple-negative breast cancer. She described herself as a vegan and categorically refused standard treatment. She sought out various alternative, “natural” treatments but developed multiple bony metastases, bulky retroperitoneal lymphadenopathy, and renal obstruction, and required percutaneous nephrostomies. She was admitted with acute renal failure and seizures lasting many hours; the prolonged seizures left her with severe anoxic brain injury. The neurosurgeons who were consulted on her case described severe, hypoxic cortical injury, as well as partial brain stem herniation, leading to brain stem injury. She was left comatose and nonresponsive to pain or any other stimuli. She has no corneal or eye reflexes; however, she does have intact breathing and gag reflexes, so she is not brain dead. Over the past few days, she has undergone a tracheostomy and has been weaned from the ventilator. She is expected to go on to progress to a vegetative state, and in the meantime, her kidneys have started to function and she is making urine again. She has only one relative, an adult daughter, who has power of attorney for her. Her daughter requested that her tube feedings and all other medications she receives contain no animal products, consistent with her previous veganism. However, she has categorically refused to consider a “do not resuscitate” (DNR) order or any other treatment limitation, stating that she and her mother are “Messianic Jews” and strongly believe in the possibility of miraculous healing, and that her mother will be healed through faith and miraculous intervention. The whole clinical team, and particularly the bedside nursing staff, is very concerned about the possibility of having to perform a code on the patient. What are the ethics of writing a DNR order for this patient?

Dr. Helft Responds:

Although the essential problem in this case is common (how to negotiate the withholding or withdrawal of life-sustaining therapy), the details of this particular patient’s situation make the issues particularly complicated. Although any one of these issues could provide fodder for a long discussion, I will highlight and discuss just three of them.

The first is the issue of the patient’s prognosis. Prognosticating in cases of severe brain injury is enormously complex (and way beyond the scope of my expertise), but I get the impression that since this patient has not progressed to whole brain death, she is most likely to progress to a persistent vegetative state (PVS) and will not require positive pressure ventilation. As everyone knows, patients in PVS may survive for years or even decades if they are given food, hydration, and good nursing care. The estimates are that there are perhaps tens of thousands of patients in PVS around the United States, and one can therefore conclude that, at least to the surviving family members who make decisions on behalf of such patients, they feel that such an existence represents an acceptable situation. However, this patient also has advanced breast cancer, which is a variable, though ultimately monotonic, illness with an inevitable decline, leading to death. The timing of this decline is highly variable, although less so in the case of someone who is not a candidate for systemic anticancer therapy because it would be medically inappropriate. All of this means that this patient could theoretically survive for months or many months.

The second issue is staff distress. I suspect that three main factors are driving this distress. The first is that there is empirical evidence that healthcare professionals are much less likely to desire to live in a state of somatic survival than lay people; thus, many of us cannot imagine making a decision to pursue life-sustaining therapy in such circumstances, especially on behalf of a loved one. The second factor is likely to be the apparent contradictions that are so distressingly evident in the daughter’s decision: on the one hand, the patient appears to have rejected allopathic medical care and treatments when she was diagnosed with breast cancer, but now her daughter is making the decision to pursue such allopathic, life-prolonging treatments in the face of devastating diagnoses. The cognitive dissonance of this for the clinicians cannot be overestimated. The third factor is probably that, although it is clear from national survey data that US adults are extraordinarily likely to believe that such supernatural events as divine healing can occur, healthcare professionals are consistently less likely to believe in them. However, because of the special respect we give to faith-based claims, “waiting for a miracle” can become a sort of “trump card” that is capable of shutting down further attempts to limit treatments.

The third issue in this case pertains to your specific question about the ethics of writing a DNR order, presumably over the objection of the patient’s daughter. Although not codified specifically in federal statute, there are various historical and standard-of-care pressures that functionally put final decisions regarding resuscitation status in patients’ and surrogates’ hands. This means that, although decisions regarding essentially all other medical procedures (eg, liver transplant, dialysis, chemotherapy) lie with physicians, decisions about whether to provide cardiopulmonary resuscitation (CPR) and advanced cardiac life support are left to patients and surrogates. Although way beyond the scope of this brief analysis, there have been various attempts over the course of the last 20 to 30 years to alter this dynamic, and to return control over CPR decisions to physicians. My own hospital, like many others, has a policy to permit the overriding of surrogates’ decisions; however, this involves a long process and has rarely been implemented. The State of Texas has a law (the Texas Advanced Directives Act) that outlines a process for such unilateral decision making, and provides legal protections for clinicians who follow the process. But, in general, such decisions remain within the purview of patients and surrogates. So unless your own hospital policy outlines a process for overriding such decisions, and you decide to follow the process, you are generally speaking bound by the surrogate’s wishes.

Disclaimer: The advice offered in this ethical consultation feature is based solely on the information supplied by readers, and is offered without benefit of a detailed patient history or physical or laboratory findings. The information is offered as a discussion of ethical issues and is not intended to be medical or legal advice and, therefore, should not be considered complete or used in place of a formal ethics consultation or in place of seeking advice from your ethics committee, legal counsel, or other available resources. One should never disregard or change medical advice or delay in providing it because of something that is printed here. The opinions expressed here are only those of the author and do not reflect the viewpoint of ONCOLOGY.

In a quandary about the ethical dimensions of a management decision?

Practicing oncologists regularly wrestle with a wide variety of ethical issues. If you have a case that you think would benefit from the advice of an oncologist with special training in ethics, email it to susan.beck@ubm.com. Consultations will be provided by Dr. Paul Helft, director of the Charles Warren Fairbanks Center for Medical Ethics. Cases that the Editors feel might be relevant and helpful to others may be published in a future issue of ONCOLOGY and/or on CancerNetwork.com, with identifying details changed or removed to protect privacy.