The following consultation report is based on a real clinical dilemma that led to a request for an ethics consultation. Some details have been changed to preserve patient privacy. The goal of this column is to address ethical dilemmas faced by patients, families and healthcare professionals, offering careful analysis and recommendations that are consistent with biblical standards. The format and length are intended to simulate an actual consultation report that might appear in a clinical record and are not intended to be an exhaustive discussion of the issues raised. Column editor: Robert D. Orr, MD, CM, Consultant in Clinical Ethics, CBHD.
Is it permissible to forgo life-saving dialysis in this man with a stroke based on his family’s refusal?
Herbert is a 75-year-old retired engineer who went to the Emergency Department two weeks ago with leg pain, shortness of breath, changed mental status, and mild left-sided weakness. Work-up on admission showed an oxygen deficit and a lung scan showed that he had had a pulmonary embolus. Past history shows that he had coronary artery bypass graft surgery three years ago with multiple complications—dialysis for two months, ICU for four months, hospitalization for a total of five months.
On admission two weeks ago, he was treated with oxygen and with heparin to prevent further clotting. Two days later his left-sided weakness progressed to full paralysis, and a CT scan of his brain has shown a large, non-hemorrhagic stroke, presumably from a blood clot in spite of the heparin. He has had no neurologic improvement in the subsequent 12 days. He appears to have minimal awareness. He has also had deteriorating kidney function and will need dialysis if he is to survive. His family has struggled with decisions and has now requested limitation of therapy—no CPR, no intubation, no dialysis—believing this would be consistent with his wishes. Since his neurologic condition is stable, his physicians are somewhat uncomfortable not using dialysis to prevent his death.
His wife, son and daughter-in-law met with the ethics consultant. They describe him as optimistic, vigorous, energetic, even “hyperactive.” He loves life and is well loved by family and friends. He has made it clear to them on more than one occasion that he would not want to go through another illness like his protracted hospitalization and dialysis three years ago. When his wife was in a convalescent home for a few weeks last year, he again stated that they were to “let me go” if he were to be “stroked out like those patients.” His nurse reports that he is intermittently able to interact, and on one occasion he wrote on a clipboard that he wants to die and “go to God.” He is a devout Christian and his family believes he is spiritually ready to die. His wife says that if she were to choose what she would want for him, she would request dialysis, full aggressive therapy, and eventual transfer to a rehabilitation facility so that he could live, even if disabled from a stroke. But she recognizes his right to choose limitation of therapy, and she will reluctantly accept that. Her son and daughter-in-law are in agreement that his wishes should be followed.
In American medicine, autonomy is honored as one of our most revered tenets. An essential element of autonomy is the precept that as healers we are not empowered to touch, treat, or invade another person’s body against his or her will. Emergency care to save a life presumes consent, but otherwise consent must be obtained from the patient or an appropriate surrogate decision-maker prior to treatment. When a patient is unable to make an autonomous choice, the appropriate standard is to use “substituted judgment,” i.e., we are to make the decision we believe the patient would make, based on his written instructions, his verbal expression of wishes, or an understanding of his values.
This vignette does not tell us if Herbert has completed a Living Will or Durable Power-of-Attorney document. Assuming that these legal documents have not been completed, in most states the next-of-kin is authorized to make medical decisions for the patient. Specifics vary by state, but generally the patient’s spouse is authorized to make these important decisions, with input from the patient’s physicians.
In this case, Herbert had ample opportunity to examine the option of dialysis, having already undergone this himself, and had clearly expressed his will to not undergo this again. Additionally, he directly observed patients who were left with disabilities just like those he is likely to have should he survive this stroke.
His written communication during this hospitalization should also be considered, though we might question his decisional capacity at the time this was written. His capacity may have been compromised by medication, depression or other circumstances. It would be wiser and safer to consult with his designated decision-makers, and not base our treatment decisions solely on his questionable communiqué.
The fact that the children are in agreement with their mother is very helpful. Bitter family arguments sometimes center on difficult end-of-life choices like this.
While it may be tempting to consider societal issues, such as allocation of scarce or expensive resources, these are policy matters that should not be made at the bedside.
Fifty years ago, Herbert would probably not have survived for two weeks. He is still alive, and the issue of dialysis has been raised, because of technological advances. Because something is possible and available, however, does not automatically mean that it is wise for the patient, the family or our society. This rejection of the “technological imperative” (“can do” therefore “must do”) leads to more dilemmas.
This consult asks: “Is it permissible to forgo life-saving dialysis in this man with a stroke based on his family’s refusal?” However, this decision to forgo dialysis is not based on the family’s refusal, but on Herbert’s refusal. He was asked this question by the circumstances that had already presented themselves to his wife and to him. He answered the question with a clear “No!”
From legal, ethical, and professional perspectives this patient’s wife has clear authority to forgo dialysis for her husband. This decision may or may not end in death, but in either case, it remains the prerogative of the patient and his surrogate. If his doctors were to perform dialysis on Herbert against his will, they would be making a serious error.
Some Christians believe that life should be preserved at all costs. (Some other religions and some sects also believe that this is extremely important.) This approach has been labeled a “vitalist” stance. God intervenes in the affairs of men, the argument goes, and that means that we are compelled to preserve any opportunity for God to perform a miracle. This position may be especially important to believers at the bedside of a non-believing family member. They might hope that a delay could allow the sick patient to find Christ, and thus any expenditure of money or time would be worth it. (In Herbert’s case we know that he is “spiritually ready to die”.) The obvious rejoinder would be that God is not limited by technological, physiological or time constraints, and that if he plans to intervene he can easily do this without dialysis, intubation or CPR.
While Herbert’s death may bring great grief to his wife and family, they can rest in the knowledge that Herbert himself made these difficult choices, that he was not assaulted against his will, and that he will now be with God. They will meet Herbert again in glory.
During a period of relative mental clarity, Herbert’s doctor, wife and son met with him to discuss treatment options. By way of head nods and finger squeezes, the patient made it clear that he did not want dialysis, even if that meant he would die. He had no objection to other measures (antibiotics, fluids and nutrition, physical therapy). He remained comfortable, but with diminishing function and alertness. He died seven days later.
This case study, used by permission, originally appeared in Ethics & Medicine: An International Journal of Bioethics Volume 24 Issue 2, Summer 2008.
