Knowing Is Difficult Even for a Doctor When a Loved One Is the Patient!

When we or someone close to us faces a serious, life-threatening illness, psychological factors accompany the physical consequences. In diseases with a longer course, such as cancer or organ failure, our psychological state can sometimes be more difficult to bear than the physical effects of the illness. The psychological impact of a disease affects patients and their loved ones in very different ways. During an illness, is being unfamiliar with the disease or not knowing the entire process more psychologically challenging? Geriatrician Jessica Kalender-Rich shares her experience as a patient's daughter.

I was at work when the phone rang. My sister, who was at my father's bedside, told me, “Something is wrong. The doctor is here; talk to him.” The doctor on the phone was a cardiologist. He must have told me something about myocardial infarction (a heart attack) or hypotension (low blood pressure), but all I remember is emergency heart disease. I can only remember 18 hours earlier. His treatment then had been elective (a planned, nonemergency treatment), but it led to a complication from a stent placed to open a coronary artery. This 2nd situation was an emergency. I stood in front of my desk, feeling my colleagues watching me. I had last seen my father 3 hours earlier. I had stopped at the hospital before going to work so I could be there when the doctors came. My father and I joked about how unhealthy a carefully prepared, heart-healthy, low-carbohydrate meal looked. My father, who had spent his life selling supplies to restaurants, complained about the quality of the hospital's silverware. Naturally calling me his little girl, he had told me, “You don't have to wait here. Go to work and come back to check on me tomorrow.” He had told me that he was fine and that he loved me.

I put the phone aside and began gathering my things. I left work without even saying goodbye to my colleagues. The 10-minute drive took years. The hours in that small waiting room felt like decades. A few hours later, my father's close family and friends began arriving. My friends would have come too if I had called, but I had no energy to do anything other than control myself and interpret what the medical teams were saying. I remembered patients outside the cardiac catheterization laboratory during my residency, but this time my father's face had replaced theirs. The doctors used unfamiliar terms that had not been widely used even during my residency: Impella (medical devices that provide temporary ventricular support for patients with impaired heart function) and ECMO (a medical device that takes over the functions of the heart and lungs when they fail). I began researching this new technology. Meanwhile, I was calling close family, calling the hospital where I worked to arrange a transfer, and asking my favorite medical staff and doctors to meet me at the hospital.

When we arrived at my own hospital, I felt at home. I had no idea how comforting it would be to see familiar wallpaper and know where the toilets were without asking anyone. I had no idea how much I needed to see my friends' faces and have their support. The next few days passed in a blur of medical procedures, specialists' terminology, high-tech machines, test results, nurses and doctors. At that moment, rather than a doctor—a geriatrician, internist and palliative care specialist —I was my father's daughter. I watched the numbers on the tests and hoped and prayed. Deep in my soul, I knew, but my family did not want to know, and the doctors did not tell us with complete clarity what we were facing. Over the next 10 days, I translated medical jargon for my family and friends and prepared daily messages that were widely shared. I spent days and nights in the hospital waiting room. The thought of leaving the hospital frightened me: what if something changed? I remembered times when I had called relatives who, just like me, had gone home, to tell them that their loved one was worse. I had become part of the intensive care unit, asking hundreds of questions, adjusting blankets and smoothing my father's hair. I even shaved him despite his increased bleeding risk from taking more than one blood thinner. Although I gave them my mobile phone and pager numbers, I never left the hospital. Because I knew.

I asked the intensive care clinician for an opinion on the case and made him promise to call me if anything changed. Every morning I listened to what the other doctors said, hoping to hear something my doctor's mind could bear. When my father developed delirium (a serious disorder of mental abilities), I read statistics to the nurses until my father failed sedation (a controlled, half-asleep state) and they connected him to ECMO. I followed a friend who had once been my student and asked questions about the potential for recovery until he returned from duty. I asked my friend what he thought. Because I knew.

The entire medical team was doing its job. They were using every tool in their kits to save my father. They tried to find answers. Then they set an end date: a day on which they planned to disconnect the ECMO circuit. They strategically avoided my questions about the progression of his illness. I looked at my father and remembered a conversation we had had years earlier. He had spoken with disdain about depending on others, even for a short time. I thought about my own patients and their long recoveries in long-term acute care hospitals, and I knew. I told him that I trusted him, that I loved him and that he was in charge. I told him that we would be fine and that we would support whatever decision he made. I told him that we wanted him to stay, but that we understood. I told him that I would always keep my promise to look after his wife. I told him that I was there and did not know what came next, but that he was in charge and it was up to him to give us some answers. And I waited.

Doctors do not prolong life; they become doctors to prevent early deaths, improve human life and help it become better. But along the way, we get lost among organ systems and diseases. We drown in test results and vital signs. And we miss the big picture. Sometimes, when we look at a patient, we think in the backs of our minds, “Poor man, there is no way he will fully recover from this.” But we do not tell the patient or the family, because we are the ones who will fix things. We are healers who entered this noble profession to treat patients and repair diseases. We cannot fail. This is a tragedy. Only when we take a step back can we see the whole person. Only then do we treat patients instead of body parts. And only then can we hear that, even if we do not like it, the family is asking the right questions and begging for answers about the big picture. 

Every month, I put 4th-year medical students through a high-quality simulation in which they practice telling a standardized, patient actor that a loved one is dying. I give them sample phrases to use when sharing difficult information and body language for communicating empathy. I ask them to put themselves in the family's place and think about how they would want to be told that someone they loved would not survive. Suddenly, I had become the family to be spoken to.

I often wonder when the medical team first suspected that my father would probably die. I imagine it was long before the conversation in which they shared their concerns. I am sure they meant well. Sometimes the family knows before the doctors do. Sometimes they are simply waiting for the doctors to confirm their fears. Sometimes they know.

As I had feared and, in a way, expected, my father took what I told him seriously and left us no opportunity to wonder about the next steps. His rapid deterioration the next morning was followed by hours of blood transfusions, medications, diagnosis and, finally, conversation. The doctors were now answering the questions they had previously avoided. The family gathered at my father's bedside, and after everyone came to comfort one another, my father found his own peace.

Days later, we began updating bank accounts and insurance. We found notes showing that, a week before his first medical intervention, he had shared his passwords with his wife for the first time. Because he knew too…

This painful experience of Dr. Jessica Kalender-Rich shows how difficult a responsibility knowing can sometimes be. Her essay creates a bridge between the feelings of a patient's loved ones and those of doctors during an illness.

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