• © 2012 by American Society of Clinical Oncology

Waiting for a Miracle

I met Michael during my first year as a pediatric hematology and oncology fellow. He was a charismatic yet shy Hispanic 18-year-old with the kindest smile you can imagine. I remember Michael as a model patient who followed every single therapeutic recommendation to the letter, with the hope of curing his recently diagnosed metastatic osteosarcoma. From day one, we had many long conversations about this new language of cancer—osteosarcoma, cure rate, metastasis, chemotherapy, alopecia, mucositis, nausea and vomiting, fever, neutropenia, limb-salvage surgery, percent of necrosis, palliative care, disease progression, and death—in the Spanish words and phrases with which he was most comfortable.

Michael's parents were hard-working undocumented immigrants who each held two jobs to support their six children, two of whom lived in the United States and four of whom lived in Mexico. It was difficult for Michael's parents to make it to his scheduled clinic visits; instead, they would often arrive at the hospital late at night with delicious home-cooked tacos and enchiladas. Michael enjoyed both foods tremendously throughout his admissions for preoperative chemotherapy. I used to joke with him that I was going to try tacos instead of antiemetics for my next patient, because I could not recall Michael ever having a single episode of vomiting.

Time passed, and after twelve weeks of chemotherapy, the day of Michael's surgery arrived. The orthopedic surgeons performed a limb-salvage procedure, but the primary tumor showed a poor treatment response. I shared this unfortunate information with Michael and his family and explained to them that, although the response had not been good, there was still a slim chance of cure, with a new, more intense chemotherapy regimen. He agreed to the new plan without hesitation, mentioning his faith that he would be healed; his kind smile and optimism remained unchanged.

More chemotherapy, more tacos and enchiladas, and fortunately, no emesis followed. After Michael completed treatment, bilateral thoracotomies with wedge resection of palpable nodules showed persistent disease in his lungs. With no evidence of macroscopic disease after surgery, however, we stopped therapy, and Michael returned to his normal life. Unfortunately, this did not last long. Three months later, a few nodules reappeared in his lungs. From that point, Michael's cancer progressed relentlessly despite additional thoracotomies, second- and third-line chemotherapy regimens, phase II clinical trials, and metronomic oral regimens.

Michael's quality of life remained relatively good throughout his treatment, and given his relative wellness, our discussions regarding his inevitable future were challenging and hard for him to grasp. I continued to meet regularly with Michael, his long-time girlfriend (whom I had not met before his relapse), and his parents. I would repeatedly begin our discussions with a dose of reality, taking care to explain that we were running out of therapeutic options. I told him that if disease progression continued, unmanageable symptoms would appear, and our only option would be to provide comfort and supportive care. Despite these difficult and sometimes grave talks, his kind smile remained steadfast. At the end of every conversation, I would ask, “Do you understand?” and his response would always be, “Si.” Although I used strong words like “palliative care,” “pain,” “respiratory problems,” and “death,” he did not seem unsettled.

I recall countless conversations with Michael during which, even when I shared devastating news, his kind smile never left the room. Did his smile indicate a lack of understanding? A reflection of unadulterated faith in finding a cure? Or was there even greater significance hidden behind it? I choose to believe that it was Michael's way of alluding to his firm belief that higher powers would care for both him and his loved ones.

In the following months, new problems appeared—hemoptysis, brain and bone metastases, escalating pain with need for palliative radiation, and a decrease in Michael's quality of life. With his symptoms progressing, I opted for more direct conversations regarding palliative care with Michael and his family. I thought my message was clear. I said, “We have reached the limits of cancer medicine, and we need to focus entirely on relief of your symptoms. If you continue getting sicker and the tumors in your lungs keep growing, your lungs will fail, and if we do not escalate your respiratory support, you will die.” Michael's answer was always the same. He would say, “If my lungs fail, I don't want you to let me die. I want you to do everything you can. I want you to keep me alive. I am going to get cured. I am waiting for a miracle, and the miracle is going to happen.”

When I spoke with Michael's parents privately, they would agree completely with my recommendation for full palliative care and no aggressive medical intervention, but they would also renew their commitment to honoring Michael's choices and decisions. Michael's 17-year-old girlfriend, who had dropped out of school and moved in with Michael's family to help care for him, always remained silent during these long talks. I knew she supported Michael and was also convinced that the miracle was going to happen.

Reflecting back on Michael's story now, I wonder about the miracle he was expecting. His disease had relentlessly progressed, and he could see and feel his body's deterioration. Despite this, he still found room for hope and faith. Was he really expecting divine intervention? Was he expressing pure optimism regarding the possibility of recovery?

I tried to ensure that Michael understood that my job as his doctor was to offer desirable and effective interventions while also making sure those interventions were appropriate given his specific circumstances. Personally, I did not think Michael should be intubated and kept alive artificially. I did not want his family to witness more assaults to his body or for him to suffer further. When cure is no longer a feasible goal, I believe my responsibility is to avoid futile intervention and advocate for my patients in every instance. I struggle with the fairness of letting patients or families decide between options, as if they were ordering off a restaurant menu, implied by statements like, “We can intubate your son or not; that is your call.” I think our recommendations about appropriate end-of-life care, while taking the patient's values and preferences into account, should be as strong and determined as our recommendations about the first chemotherapy regimen we offer with curative intent. I believe our patients expect our best recommendation, even when that is a transition to full comfort-based palliative care.

I assured Michael that I was going to remain with him and his family until the end; I tried to concretely instill in his thoughts that the end was probably close. I assured him that I was going to do all that I could to both meet real goals and ensure the well-being of him and his family. However, I reminded him that I could not base my medical recommendations on the expectation of a miracle. I reiterated the necessity of a reasonable end-of-life plan. Again, he responded to those conversations with a kind smile.

Retrospectively, I wonder about Michael's comprehension of reality. Did my words justly delineate his circumstances? Was his faith allowing him the ability to accept this challenging situation? Even in the absence of any language barrier, I will always question his level of comprehension at each stage of his disease's progression. It seems that regardless of the language used, time exhausted, and number of repetitive conversations, there will always remain a sizeable gap between what we as physicians say and what our patients and their families perceive. However, it is part of the job to make that gap as small as possible. As professionals, we may fail to recall that it took us years of training to fully understand all the concepts related to health and disease. We can be guilty of expecting that our patients and their families become instantly fluent in this “foreign language,” all while they are enduring the most stressful and overwhelming time of their lives.

Michael's condition continued to deteriorate as a result of moderate hemoptysis and progressive respiratory failure. We had another talk, and Michael met my recommendations with the same smile. When he was moderately dyspneic, he told me, “Don't let me die. If I get worse, take me to the pediatric intensive care unit [PICU].” I elaborated one more time that, in his case, those measures were senseless and would not yield a different end result. I explained to him the reality of not being able to be surrounded by his family and friends in the PICU. If we did as he asked, I explained, he would be connected to and reliant on a ventilator, which would eliminate any conscious contact with his loved ones. He did not change his mind, and immediately after our conversation, he said he felt like having a taco.

Later that same night, I was called to his bedside. Michael was clearly worse and required additional respiratory support. I grabbed his hand and reassured him calmly that I was there and that his girlfriend and family were there with him. I was seconds shy of calling the PICU to transfer him but decided to ask him one more time—“Michael, do you really want to go to the PICU, or do you want to stay here, with your family?” He looked me in the eyes and said, “I want to stay here. I am not going anywhere.” Surprised by what I had heard, I looked around and met the gaze of his girlfriend. She fervently tried to convince him to go to the PICU, but she soon also came to understand that it was best for Michael to stay with them, without new machines or doctors. Medicine had reached its limit, and he finally accepted it. Twelve hours later, Michael passed away peacefully in his hospital room, surrounded by the people he loved.

I believe in miracles. I think they happen all the time, but I think we often fail to recognize them. To me, Michael's eventual acceptance of his impending death was a miracle. That miracle spared Michael and his loved ones from enduring fruitless interventions and unnecessarily prolonged suffering. I am a strong believer that if miraculous healing is going to occur, it will occur regardless of human intervention. Waiting for a miracle, however, is not part of our professional duty. As much as our patients, their families, or we ourselves want to believe that there may be divine intervention or that a higher power will do its job, we still must do ours.

• Received February 17, 2012.
• Accepted March 5, 2012.