The Anatomy of a Decision

The Admission

There is not much left of Rose. In the hospital bed, under the covers, she takes up very little room. There is enough of her, though, for something to be very wrong with this 95-year-old great-grandmother. Her daughters had received the call in the early morning hours from the assisted living program where their mother lives. Rose, never a complainer, was complaining of pain, and was vomiting coffee ground-like material for 2 hours. Her doctor, who has privileges where she lives and at the hospital, was called and had her sent to the emergency room.

It was much the same for Marie. Her doctor admitted her to the hospital from the nursing home where she has lived for the past 3 years. She has advanced dementia and was not able to tell her caregivers that something was wrong. Even so, they knew. She was not quite the same and when her nurse moved her to change her diaper, there was discomfort when her belly was touched. At 86, there is neither family nor friends to call. Her court-appointed guardian was notified of the transfer.

The Plan of Care

The EMS report indicated that Rose was awake, alert, responsive, and followed simple commands. This was not enough for her to understand the findings of the computed tomography (CT) scan of her abdomen: free air and a perforated peptic ulcer. Her primary care doctor, who met her in the emergency room, and the surgeon whom he had consulted, spoke to Rose's daughters, who are her proxies. There is a perforation and contents were leaking into her abdominal cavity. The surgeon said the condition was life threatening and an indication for emergency surgery. Without it there was a high mortality rate within a few days. As for the surgery, this would be a major operation. Given her age and general medical condition, there was a possibility she would not survive the surgery. If she did and the repair was successful, there would be a long convalescence and again, given her age, the possibility of many complications. She would be on a ventilator during the operation and there was a risk that she might not be able to be weaned off it. There would be artificial nutrition and a long period of recovery. “And the pain?” asked a daughter. “We can treat the pain whether or not we operate.” “Then the answer is no. Our mother would not want surgery.” Making the decision is not enough. They turn to Rose's doctor for the assurance that they are doing the right thing. It comes easily. “This is a good plan,” he says without reservation. “She will pass away soon and we will make Rose comfortable until that happens.”

Maria's doctor, an attending at the nursing home and hospital, admitted her with the diagnosis of rule out urinary tract infection (UTI) and sepsis. Her transfer papers indicated diminished appetite attributable to the advancing dementia, and weight loss. A surgical consult was requested and the CT scans showed a fistula and a mass that was interpreted either as a tumor or a result of infection. The surgical resident contacted the court appointed guardian for consent. “The leak from the fistula into the abdominal cavity is significant and this is a surgical emergency. The risk: the possibility that she will not survive the operation. That possibility becomes a certainty without surgery. In either case a do-not-resuscitate (DNR) order is indicated given the risk.” With survival as the measure and Maria's inability to receive artificial nutrition because of the fistula, her doctor agrees with the need for surgery and the guardian gives consent.

The Hospital Course

Rose's situation has taken an unexpected turn and this has confused and burdened her daughters. After 72 hours of being unarousable, she became awake, aware, and although confused, was speaking. She was supposed to be dead and now she was more alive than she had been. Her doctor could only speculate about this turn, but there is no speculation about the findings on the CT scan, or that he continues to feel the free air in the abdominal cavity. The daughters, supported by Rose's doctor, stay the course with the plan of care. Five days after the admission, the patient is again sleeping more than she is awake, and less aware of the family that is always at the bedside. She is transferred to a hospice and expires 5 days later. A daughter reports that there were intermittent moments of being awake and when her great-grandchildren visited, she reached for them and smiled. Her death was peaceful.

Maria survived the surgery. From the surgical report: “The mass was a large tumor invading the sigmoid colon, small intestine, and bladder. Fecal matter was found in the abdominal cavity. Urethral stents were placed, the colon resected, a Hartman pouch and a colostomy performed.”

Twenty-four hours postsurgery: the patient's condition is critical. She continues on the respirator and needs a pressor to maintain her blood pressure. The critical care attending in the SICU will add a second pressor if the blood pressure does not become more stable. A call is made to the guardian to discuss futility of care. She needs more information and must speak to the patient's primary care physician before any decisions can be made. They speak and the decision is to not withdraw care at this time.

Forty-eight hours postsurgery: the patient's blood pressure is stabilizing and the second pressor will not be needed. Sedation is being decreased and an attempt to wean will be initiated. Based on this report, the guardian asks that “we go step by step.” The plan of care will be developed incrementally based on the immediate medical issues at hand. The DNR stays in place. Maria's doctor endorses this plan. To date there have been seven consultants involved in the patient's care.

Considerations and Conclusion

How are we to consider the divergence in the plans of care given the similarities in Rose and Maria's situation? Both could no longer live independently, both needed proxies to make medical decisions, and surgical emergencies precipitated hospitalization.

The Decision Maker

The surrogate's legal authority in both cases is the same and although the court-appointed guardian was neither family nor friend, she had been involved in Maria's care for 3 years. Might there be self-imposed or other limits on decisions when the court appoints the agent? If there were no limits, is there more medical information needed by the court-appointed agent to arrive at the decision to opt for withdrawal of acute care? If decisions are being made using the best interest standard, should the proxy's moral and ethical positions such as being opposed to withdrawing life support, be known before the proxy is chosen or appointed?

Informed Consent

What are the measures in discussing the risk, benefit, and burden of any proposed medical or surgical procedure? In one case that measure was survival, in the other it included expected complications and quality of life if the patient survived. Should the measure also include a patient's known wishes or best interest? And should futility of care enter into the discussion when it is relevant?

The Primary Care Doctor

What is the primary care physician's contribution to the decision: a transmitter of alternatives? A predictor of outcomes as measured in percentages based on evidence based medicine? A source of guidance and counsel, using the best interest standard, if the doctor has knowledge of the patient?

Rose and Maria are no strangers to a doctor's practice. Given the complexity of treatment options and anticipated outcomes, the physician must grapple with challenges and ethical dilemmas in order to adequately counsel families and guardians who make end-of-life care decisions.