We were called to the emergency department to see a young woman, DR, with metastatic endometrial cancer. She had presented with abdominal pain and was found to have evidence of perforation on CT imaging. The CT also demonstrated the unresectable uterus and multiple peritoneal implants. The tumor had not been responsive to the last bout of chemotherapy. DR had been less active, and had lost significant weight over the last several months. A former real estate agent, she hadn’t worked since her diagnosis. She lived with a friend and had a daughter who was very worried about her condition.
I was also worried. After looking at the CT I had told the resident over the phone that operation might not be a great choice. Yes but the family "wants everything done," she replied... CRINGE. "I’ll be over," I said.
Why do we cringe at this statement? Perhaps we feel trapped by a family (or a medical team) who suggests we do everything. There is no out. The die has been cast. This is certainly the case when a non-surgical team has suggested to a family the option of a last-ditch operative intervention. What scares us about the family who wants "everything done"? Often, we don’t think we should be intervening with a surgical operation when the outcome appears dismal. We are concerned with litigation if we don’t try "everything." We fear the communication challenge of speaking with a family with "unrealistic expectations."
But if we take a step back, we might gain some appreciation for the family perspective. Who wouldn’t want everything done to save a loved one, or to prolong our time with a loved one? Who wouldn’t want everything done that might maximize the opportunity for recovery? And who would ever want to do nothing for a loved one in a medical crisis?
I have witnessed (and participated in) two responses to these challenging moments. The first is to acquiesce and perform an operation as a "last-ditch effort." The second is to simply refuse to intervene or even refuse the consult. Neither of these approaches is serves the patient, his or her family, or the health care team (including ourselves). To simply acquiesce puts the patient at increased risk of suffering, gives the family a false notion of hope, and creates moral distress in our team. To simply refuse and walk away leads to patient and family abandonment (with a lack of understanding why operative intervention is not indicated) and leads to conflict within our health care team.
I suggest we enter these situations with the premise that we always do everything and we never do nothing. We do our best to provide treatments to meet the goals and needs of our patients and their loved ones. At times, this may mean a surgical intervention to restore a patient to full premorbid health. At others, this may mean an operation to alleviate suffering, for example, from a malignant bowel obstruction. And sometimes this means not operating as it will only increase or prolong suffering. Yet in the latter situation, there are plenty of appropriate interventions: relieving pain or dyspnea, providing spiritual support, promoting bereavement, and assisting all participants in avoiding complicated grief. These therapies can and should be provided with the same aggressive approach with which we provide operative therapy.
With this approach we are able to reassure our patients and their loved ones that our interests lie in providing the best possible treatments in meeting their goals and needs. And that no matter what, we will find a means to help in some way.
As we sat in the emergency department, we reassured DR that we were there to help and find the best course of action. We admitted our uncertainty with the immediate prognosis with or without operative intervention, but that ultimately she was dying from the cancer. She expressed that she was not ready to die. "I hope we can avoid death as long as possible," I said. "While I am unsure which course of action will prolong your life the most, I am concerned that with operation your death has a higher likelihood of occurring in the midst of a prolonged ICU stay. If we try antibiotic therapy and pain control you might have more of an opportunity to spend time with your daughter and friends." We recommended avoiding operation, focusing on symptom management, and maximizing time with her loved ones.
DR wanted time. She was admitted for antibiotic therapy and aggressive symptom control with a consult to palliative medicine. She stabilized and was able to be transitioned to home hospice with her daughter and friend as caretakers.