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Medical Humanities

The Patient’s Wife

Teresa Lee, MD, PhD

October 30, 2017

She sat by his bed every day and played her harmonica. Never tunes I recognized, just a soft, slow progression of chords that blended weirdly with the sounds of the ventilator and pumps that kept her husband alive. By the time I met Mr. D, he was well beyond the point where I could get to know him as a person. Tethered to machines and cycling continuously between sedation and delirium, I never observed him to be lucid enough to comprehend what was going on around him. As a medicine intern on my first intensive care rotation, I frequently wondered what being delirious is like; what phantasmagoric sights, sounds, and other sensations does one perceive when prolonged illness and hospitalization cause one’s link with reality to essentially dissolve? Is it as terrifying as my patients’ moaning and thrashing would suggest? Or are their responses, like their perceptions, also disconnected from reality, reflexive more than anything?

Mrs. D never doubted that he could hear her. She and her harmonica were at his side constantly, as present as he, in a sense, was absent. Whenever he cried out, she would rush to him and stroke his head. “Shhh,” she crooned. “It’s alright, I’m here.” When she was not playing for him, her hands remained busy, filled with skeins of yarn and clicking knitting needles. With her short graying hair, quick darting movements, and stooped posture, she reminded me of a bird at her nest.

One day she confided, “Did you know he was my college professor?” This, with an impish smile, acknowledging the unorthodox start to their relationship. “Not that we were a couple then!” she quickly added. “But I knew the first time I sat in his class that I would get him someday,” she laughed. Life had taken them in different directions for many years; she had grown up, found herself, and eventually found him again. They had become friends, then fallen in love and married. Her words painted a picture of a scholarly and gentle man, someone whose formidable intellect had been a fundamental part of him, a part which at the moment existed only in her memories.

They had been happy, even after tragedy struck. “We had thirty good years,” she said, before he began to exhibit confusion, memory loss, and headaches, followed by balance difficulties and incontinence. He was eventually diagnosed with a rare rheumatologic condition involving the lining around his brain. For a while, he improved with immunosuppressant treatment; however, because of the medications, he began to develop frequent infections. This time, it was bacteria in his bloodstream that had seeded his heart and caused an abscess. Despite prolonged antibiotics, he continued to worsen, and the persistent infection was starting to damage other organs.

Mrs. D was subdued as she absorbed each update, seizing on the smallest changes that could be perceived as positive. After consulting with the cardiothoracic surgeons, I sat down to have another discussion with her. Mr. D’s infection could not be cleared, I explained, without heart surgery to remove the infected tissue, but because he was so ill, the surgeons did not believe he would survive such an operation. It was unlikely that he could come off of the machines that were keeping him alive and even less likely he would recover to be the person she knew and loved. She was quiet for a time, not crying, merely holding his hand and gazing at him. Her fluttering hands were still for once as they clasped his. Eventually, she conveyed to me that she wished for him above all to not suffer any more.

He died the next morning soon after I arrived to work. Per Mrs. D’s request, we had removed his breathing tube several hours prior, and she sat with him, stroking his hair as his breathing gradually became shallower, then stopped. Expressing how sorry I was for her loss, I asked if there was anything I could do for her. She paused, then asked if it was possible to donate his body to the hospital for research involving his rheumatologic disease. Her tone suggested she had been considering this for some time, but wasn’t sure how it would be received. She hurried to explain, “He would have wanted to help others learn more about it.” Moved by her offer, I told her I would try to find out how to do so.

I started with the pathologist on-call. The resident who answered sounded dumbfounded by my question. “I don’t know about that,” she said. “I can ask around and let you know.” I thanked her and left my number but did not hear back. I called the morgue as well, but as it was a weekend, the line rang without an answer. Finally, I had to tell Mrs. D that I didn’t know how the process worked. I recommended she ask the morgue for information when they contacted her.

When I returned Monday, it was to a new group of patients. As I hurried around trying to orient myself before rounds, I received a call from Mrs. D. I was surprised by her tearful greeting. “Oh doctor, I don’t know what to do! The morgue keeps calling, and they’re angry I haven’t picked a place to send him yet. They couldn’t tell me anything about donations, but they can’t hold him any longer.” I felt terrible that she was dealing with this in the midst of her grief. I struggled to say something comforting and promised I would try to help.

I called the pathology department again, this time reaching an attending physician. When I mentioned Mrs. D’s wish that her husband’s body be donated to researchers studying his disease, I was told curtly that nobody at our institution was doing that.

“What about other places?” I hazarded. He didn’t know.

“Could we bank tissue for the future when it might be useful? Or could this be a good teaching case for pathology residents?” I almost heard the shrug through the phone. “We don’t really need anything like that.” I hung up, defeated, feeling we were rejecting their selfless gift.
“What’s going on?” It was my resident. I explained, and she made a sympathetic face but said firmly, “That’s not your job. It’s a new week and we have seventeen sick patients.” Implied was, there’s nothing you can do for her now, and I need you to get to work.

Still, I managed to find a few minutes later that day to contact several organizations that accept whole-body donations, and I called Mrs. D. I informed her no one was studying her husband’s disease at our institution, but many foundations gladly accepted research donations. However, it was not guaranteed how such contributions would be used. Mrs. D considered, then replied that she had wished for his body to be donated to our hospital because of the care he had received here, but if we did not have a need for it, she would arrange for the funeral home to pick him up.

I ended the call reluctantly, feeling I had let her down. I wondered why it was so difficult to support my patient’s family member now that he was gone. While Mr. D lived, I mainly knew him through his wife’s stories. It was her that I updated and asked to make decisions. It was her that I comforted when it became clear his body was failing. And it was she who was suffering now. She had felt almost as much my patient as he was. But now, it seemed that link was dissolving, and my inability to bridge the gap frustrated me. My resident’s words echoed in my head. “That’s not your job.” But I wondered, shouldn’t it be?

I heard from Mrs. D once more, a few days later. She called during rounds, and I felt anxious as I hurried to the phone. Had another situation arisen, and if so, would I be able to help her? I asked how she was doing. “I’m okay, doctor.” Her voice was sad but calm. “I was wondering…” she hesitated. “Do people ever come and play music for patients? Do you think anybody would like me to play the harmonica for them?” I was touched that even after all she had experienced, she would want to comfort others the way she had comforted her husband. I strove to recall if I had seen musicians in the hospital. “I’m sure the volunteer office would appreciate your willingness to help in whatever capacity. Let me get you the number.” I hoped what I said was true, and prayed that whoever answered would be kind and recognize the generous spirit that had prompted her offer. I have not seen Mrs. D again since then. But sometimes when I walk through the hospital now, I find myself listening for the soft strains of a harmonica.

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