The Power of Listening

I have never had to stare Death in the face, but I had occasion to glance at Him on a journey with a patient who I will never forget. This patient showed me both absolute strength and pure desperation at the same time. While the hours I spent with her in the hospital were emotionally draining, I am truly grateful that she allowed me to support her in her journey. There are few better learning experiences for a medical student than being immersed in the emotions of a suffering pa­tient and reflecting on how the encounter will af­fect that student’s perspective on patient care.

This patient has already outlived expectations for more than five years. She is very intelligent, and no doubt she researched the poor prognosis for metastatic colorectal carcinoma as soon as she got her diagnosis. The people who didn’t know the details were her three loving children. They only knew that Mom was fighting cancer, fighting very hard. But she was young, only 47 years old, and vibrant; she took good care of herself. Only she and her husband knew that her original prog­nosis was a mere six months.

When I first met her in her patient room on the heme/onc floor, I expected her to look frail or weathered like the other patients I had taken care of, patients who looked as chronically ill as they were. But she did not look sick. She was lying in her bed in a silk robe lavishly embroidered with Japanese cranes and flowers. Her light brown hair was kept short, maybe because it was easier to manage during frequent hospital stays, or perhaps because it was still growing back from a recent round of chemo. The mood in her room was strangely serene for such a severely ill patient. She was contentedly reading a book, curled up under a handmade quilt. Her cell phone was on her bedside table, the hospital room phone next to it, and she had a cup of water filled with sponges to wet her lips, since she was not al­lowed to eat in case she needed a procedure or surgery. She was clearly a veteran of the wards; everything that she might need in the next sever­al hours was within reach. After talking to her for only a few minutes, I became sure that if anyone could fend off cancer, it would be this woman.

This time she came to the hospital for back pain. The patient, her husband, and the whole medical team were sure that her cancer had spread to her spine. She had already lost part of her liver and her entire right lung to metastases. Her clear, blue eyes revealed a quiet, strong determination to survive. But her body betrayed her; she was in excruciating pain; every few minutes she had to shift in her bed, and she would apologize to me for interrupting the conversation in doing so. With even the slightest adjustment, the pain she was discreetly trying to hide crept across her face and gave her away. We tried to manage her symptoms, but no amount of narcotics could stifle it. All we could do was try to get her to radiology for her MRI as quickly as possible. She was fighting hard, but so was her cancer.

As a medical student on my clerkship, I had the luxury of time. I had the ability to sit with my pa­tient and try to identify her needs in ways that busier doctors, each with dozens of patients to care for, could not. I called radiology and pinned down a time for her MRI and went to report this new information to her. On my way to her room, a nurse stopped me. She told me my patient was crying. The nursing staff had become frustrated with her, not sure how to deal with her agitation, her constant state of discomfort. I entered the room tentatively. I did not know what I would find.

The patient looked up at me, embarrassed to be caught with her guard down. I hesitated, not sure how comfortable she would feel letting some young medical student she hardly knew stay by her side. I felt a bit vulnerable too. I did not have experience with a “terminal” patient, nor had I seen such raw emotion in the face of such a challenge. I wondered how she would receive my attempts to soothe her. I sheepishly asked if I could sit on her bed with her. I did so with her consent. I began to learn about medicine in a way that no book can ever teach.

Her eyes pleaded with me through her shame-filled tears. I had surprised her with my willingness to stay. She seemed to be wait­ing for an invitation to open up to me, so I gave her one. Words came pouring out of her mouth. The tiny hospital room flooded with long buried emotion and fear; I was treading water furious­ly, trying to listen to every word she told me and still hear the de­tails that she could not. Through her tears, she told me how she knew that her children were strong and that they would understand that she had not wanted to leave them. She knew that they were old enough to take care of themselves and that her husband would continue to raise them. She told me a lot of things. I knew that she was not really telling me; she was telling herself. She was trying to reassure herself that her family would be alright when she was gone. I knew that she was saying everything that she needed to hear. I didn’t need to say anything. I sat on the edge of her bed. I listened. She painted a beautiful and vivid picture of her life. I could see her home office where she worked part-time as a social worker. I imagined her beautiful daughter playing on the soccer field. I felt proud for her son who was going off to college, and I grew fond of her loving and caring husband who had called her several times throughout the day to tell her that he loved her. I felt close to her entire family. With that closeness came a sudden wave of sadness, because caring about this wo­man’s life meant caring about her death. Her tears pulled at my own, and before I could help it I could no longer hold them back as she continued talking. I couldn’t tell if she noticed them. I didn’t know if I hoped she had.

Then it was her turn to catch me off guard. With no apparent warning, her crying had progressed to sobs, and she blurted it out, “Can you help me die?” My training had not prepared me for this type of situation. But there is no real preparation for a conversation about death. I was stunned. I stalled, desperately searching for something to say. My empathy turned to terror. I wondered if this showed despite my determination to keep my composure. I hesitated, gathering my thoughts. I asked her why she wanted to die.

She unloaded days, weeks, months, maybe even years of anger and frustration and hopelessness. She purged herself of all of the negative energy that she had been suppressing for a seemingly endless amount of time. In that way, her hospital stay provided more for her than just medicine. It provided her with a sanctuary, a safe place where she could set aside her role as a mother and wife to address her own personal needs as a patient. Once I became aware of this, I came to understand that I was playing an instrumental role in her healing. Gaining that understanding helped me to resist the urge to console her, to reassure her that things might not be as bad as she expected. She did not need to hear that from me. Besides, who was I to tell her that? I would not have been able to say any of it with sincerity. So I let her cry until her emotions were exhausted and her tears ran dry. The conversation steered itself back towards her children and their futures. Her physical pain remained, but she had successfully alleviated some of her suffering.

At last, patient transport arrived to bring her to radiology. I wished her luck and watched her bed roll down the hallway. I checked in with my team. They asked me how she was doing. It old them that she was upset, very much so, and that I talked with her. I did not give a detailed answer. I think I felt an instinct to protect her. I didn’t know if she would have wanted anyone else to know about the details of our conversation. I felt privileged that she had trusted me enough to share that part of herself with me, and I did not want to betray that trust. They told me that I did not have to devote so much of my evening staying with her. I simply nodded, reassuring them that I did not mind.

She returned from her MRI. My team and I grew increasingly anxious to find out the result, ready to confirm our suspicion that she had a mass in her spine. I made it my mission to find the answer. I went down in person and introduced myself to the radiologist. Upon hearing the details of the case, he was happy to do a preliminary reading of her MRI. My eyes were fixed on the computer screen as he pulled up her images. I did not understand what I was seeing. “Her back looks normal,” I said, but I was really asking. He confirmed that there were no signs of metastasis. Her spine was clear. I was overwhelmed with relief. Her spine was clear.

Excited, I ran back upstairs to find my team and report the news. I wanted to be the one to tell her. I nearly begged them. They chuckled and readily granted my request. When I approached my patient’s bed, my smile gave away the answer before I had a chance to use words. “There’s no cancer in your back,” I said. I had assumed that she would be relieved that there was no cancer. “Then what is causing my pain?” she asked. I had no idea what was causing her pain. We were so sure we already knew the answer that we considered no other possibilities.

The only good news I could provide for her at that point was that she no longer needed to plan on staying in the hospital for another round of chemotherapy. As part of our chats earlier, she told me that her oncologist was letting her take a vacation from her therapy so that she could enjoy the holidays. She had permis­sion to hold off until January, which was two months away. That plan was threatened by the premature diagnosis we had made of more metastasis. But that concern was gone, and she could re­sume enjoying her holidays, if only we could manage the pain. Her more immediate plan was to watch her daughter’s final soccer game of the season, which was scheduled for the next day. She had missed every other soccer game due to chemo, and she had her heart set on seeing this last one. Of course, that was also in jeopardy. She had good reason to want to get out of the hospital, a hard thing to do with her present symptoms and no diagno­sis. Feeling a bit more comfortable with the situation, this time I did reassure her. I let her know that the chief radiologist would look more closely at her MRI the next morning.

The next day I returned to the hospital, eager to see the final read of the MRI. My resident sensed the urgency in my eyes and assured me that he would let me know as soon as it was ready. A few hours later, it was in there in the records. Four bulging disks. That was it. The battle that we were fighting had just ended, and for now, we had won. My resident and I both went in to share the news that she so desperately needed to hear. We explained to her that she had a totally real and quite common cause for her pain and her cancer was not involved. Relief flooded the room. She was liberated from the “new” cancer that had imprisoned her for the last twenty-four miserable hours. She had a reprieve, for now. She asked if she could be out in time for the soccer game, though it was only a few hours from then. We told her we would make sure of it.

When her husband and daughter arrived, I ran up to meet them. I was excited to see them in person. I felt like I already knew them. The patient understood and shared my smile. She was ready to leave the hospital. As I watched the family interact, I realized that she had already left. She no longer felt like a cancer patient. She had resumed her role as mother and wife, hugging her daughter and lavishing her with compliments, expressing her excitement for the upcoming soccer game. She showed no signs of the struggle the night before. Only she and I knew the extent of it. I had seen a protected part of her that was shared with only a privileged few. She compartmentalized this facet of herself and stashed it away. Knowing that she was able to do this, and carry out her many responsibilities gave me the most profound respect for her.

I wanted to talk to her family more. Specifically, I wanted to tell her husband how amazing he was. I needed him to know that I knew how much his wife loved him and that he was doing every­thing right. But I didn’t say a word. He might have already known. Even if he didn’t, who was I to tell him? He didn’t know what I knew. He hadn’t seen what I had seen. So I told the daughter that she better win her game. I gave her mother a hug and wished her well. Then I watched them leave.

After she was discharged, a feeling of emptiness swept over me. The intensity of the previous hours rapidly lifted. I began to pro­cess what had just happened. I realized how much I had invested myself in her care. I had to ask myself why I became so involved. As a medical student, I was genuinely interested in such a progressive case of this deadly disease. I was drawn to the power that the cancer had over her body, and the response her body generated to fight back. There was clearly something special about her that had kept her alive for so long. I felt desperate for the chance to learn more about what that quality was. Then the more I discovered about her, the more I connected with her, as she connected with me. Then the drama of the course of her disease gripped me as it did the rest of the team. But unlike my colleagues who followed the story from a distance as it unfolded, I lived it alongside my patient while I held her hand at her bedside. It was that proximity that drew me in. Once I was close, it became impossible not to venture even closer. This woman’s simultaneous passion for life and fear of death infected me, and it was no longer a possibility but an inevitability that I would stay with her to support her in whatever way she needed.

I doubt that she realizes the significance of the lessons she impressed upon me. She taught me to see someone beyond their ap­pearance in the hospital. Who they are in that bed can differ greatly from who they are outside it. I learned how to guide a pa­tient through periods of intense emotion and how to address pain when concrete answers are not available. It is during those times of uncertainty that the caring of medicine matters the most. Medicine has often been referred to as an art, and this suggestion becomes critically apparent when hard science fails. My patient proved to me that genuine compassion is medicine. She showed me that healing comes in many forms, not always purely pills, chemicals, or surgery. Saying nothing can accomplish some­thing, and just being there can mean everything.

These lessons of patience and compassion are by far the most im­portant ones that I have learned to date. But how can they be taught? We have standardized patients who enact these scenarios in an effort to create experiences like the one I had. But it was the raw emotion in the room that forced me to react in those mo­ments. No amount of rehearsal could have prepared me for the intensity of watching a mother of three break down and ask to die. That moment has become embedded in my memory where it will undoubtedly stay forever. It will guide me in future situations however dissimilar to this one. It will forever shape my actions with my patients. All students deserve the opportunity to gain this insight early on. While the science of medicine is in­dispensable, these types of learning are equally if not more important to advancing the quality of patient care. The pathology is taught from books and classes, but empathy can only come from exposure. Processing enough varied experiences to reconcile a personal philosophy in patient interactions takes time. Stu­dents should be primed with a standardized patient first, but ultimately they need to get to know a dying patient. They should be able to visit with someone who is struggling in some way and learn their story. They should have the opportunity to comfort that person. They need to know in their core that healing is more than just drugs. Most importantly, they must have a chance to share in what that patient is feeling and have the opportunity to reflect on their own reaction. There is no simulation for raw emotion.

Clinical year students are urged to know more about their patients than anyone else on the team does. Doing so involves compiling information from old records and charts as well as know­-ing the most current results of lab studies, images, and consults. The patient’s living situation and lifestyle are often sufficient knowledge of the social history, and further details are frivolous. My team told me that I didn’t have to spend so much time getting to know my patient. However, that was exactly how I was able to determine who the patient really was and what was important to her. The current culture of medicine is heading toward respecting patients as people who are ill rather than as presentations of diseases. But the old mindset of treating the ailment rather than the individual is still prominent. As my team demonstrated, the art of medicine often gets lost or is sometimes looked down upon entirely. This culture has to change; the art of medicine must be viewed as equal to the science. The science will be more effective when presented to patients with an understanding of how they approach their diseases. When I am a resident, I will encourage my students to learn as much as they can about their patients and really hear their stories. Hopefully they will learn that truly knowing their patients will allow them to provide better patient care.

For me, new experiences will overshadow this one and it will eventually fade. However, periodically cases will find me that will in some way or another parallel this experience and bring it back to the forefront of my mind. I hope that it does not happen often, but I hope I do have the opportunity to travel alongside another patient on a difficult journey like this one, so that I never forget the meaning of true patient care.·

References available upon request

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^*  Preisträgerin: Ascona Prize for Medical Students, International Balint Congress Philadelphia, September 2011