Finding Hope When There Is None

Young and in pain, she came to us from another country for a repair of a fracture. It wasn’t repaired at home because of the complexity of the fracture. There was some question that it may be a pathologic fracture due to a cancer, but nothing definitive. There were two biopsies in-country. One that was equivocal, one that said it was “consistent with” cancer. Our charge was to fix her fracture and diagnose her cancer. I was to medically optimize her for surgery. She did not believe the doctors in her home country who told her she had cancer.

From our first meeting it was apparent she probably wasn’t a surgical candidate. Her thin frame had already shed nearly half of her weight, causing her skin to be stretched thin over her bones. The albumin level in the blood (a marker of nutrition) was half of what it should be, blood counts were low, heart rate was high, blood pressure was low, and she was jaundiced. Her question to me the first time I saw her, “When is my surgery?”

I answered, “We have to run some tests first.”

I couldn’t bring myself to squelch her hopes without a definitive answer as to what kind of cancer. And hey, I’m just an internist. Maybe she had some kind of cancer where there is a magical treatment I hadn’t heard about.

Over the next days, our therapeutic relationship deepened. She was amazed that we made her pain better. She was able to rest for the first time in a month, and she began to eat again. She had hope. She was a Bob Marley fan and as she felt better, she asked me to dance with her (keep in mind that she had a femur fracture and couldn’t move the lower half of her body without a lot of pain) saying, “Hey doctor – No Woman No Cry!” One day I pointed out that she was constipated, and I suggested her dancing focus on her abdomen. She made up a stomach-jiggling dance. I’m not sure if it was that or the enema that finally relieved her constipation.

During these same days, every test I did seemed to come back with more bad news. Biliary blockage. Lots of enlarged lymph nodes. Metastatic lesions in the brain. But still no culprit primary cancer. It was an endoscopy to stent the biliary blockage that found the large mass in the stomach. We did a biopsy and could finally tell her that she definitely had cancer, and we knew what kind. We could also confirm that surgery was not safe given her current state of health.

We kept the bad news from her until we had all the information and could offer her a complete picture and plan. Unfortunately, the plan was that there were no therapeutic options that could treat her fracture or her cancer. We carefully planned the delivery of the bad news with her family, interpreters, the oncologists, orthopedists, and myself all present. I started with a shot across the bow, “We have all the information back, and it is not good news.” We went on to discuss the cancer, how advanced it was, and how there was no surgery or chemotherapy that could be done without causing her more pain or suffering. All the planning for that meeting and my carefully planned words couldn’t keep my stomach from turning or the bile from starting to come up as she wailed, begging and pleading for treatment, asking us for anything we could do. After sitting in the silence of the moment, I asked if there were any questions, and all of us doctors excused ourselves.

Later that afternoon, I returned alone and spent time with her. I wasn’t sure what to expect. Her last words earlier in the day had been, “Doctor…please,” said through a curtain of tears. When I returned I sat with her, unsure how to start a conversation. After a moment of silence I said, “That was difficult news we discussed earlier today.” After more silence, I told her that despite this bad news, I would continue to care for her, treat her pain, and give her medication to shrink the tumor in her brain (steroids). After sitting and some more silence, she asked me to give her a hug. I leaned down over the bed and grasped her skeletal frame, unsure how to even hug her. It was a sort-of awkward shoulder grasp. She said, “Thank you,” and kissed my forehead. She then looked at me, shook her shoulders a bit and said, “Now dance.”

Caring for this patient took its toll on me. I found myself waking in the middle of the night, logging on to the electronic medical record at home to see her latest vital signs or looking for new notes describing her medical status. I don’t exactly know why she hit me so hard. Maybe it was the fact that she wasn’t quite 50. Maybe it was her hope that we could “fix” her. Maybe it was my fear that we couldn’t.

Over the next days, her condition continued to worsen. She spent more time asleep than awake, and she was becoming confused. It was apparent we were losing her and losing her fast. Her twenty-something daughter had been at her side throughout the whole ordeal – both at home and in our country. With my patient now confused, we had to have “the talk” with her daughter. She knew her mother was dying, but of course in the U.S. we have to ensure shared decision-making. We needed to discuss code status. While both patient and daughter were accepting of her diagnoses and decline, a discussion about avoiding cardiopulmonary resuscitation (CPR) and allowing her a natural death is something that would never have been done in her home country. I believe I was able to lead that discussion in a compassionate manner, but I still found it to be a distasteful necessity, burdening her daughter with a decision even though I tried to take the onus for a decision away from her. I presented the choice as my own recommendation – having her agree to my recommendation and not have to “choose” a Do Not Attempt Resuscitation (DNAR) order.

After ten long days caring for her, often spending hours with her each day, I left for a week of vacation with my family. I did my best to decompress. We went camping with friends, hiking at a nearby state park. We played a lot of games and sat around the campfire. But I couldn’t completely get her out of my head. I was planning to pay her a social visit after returning from vacation.

After I left, she continued to decline. She died this past weekend, the day before I got back from vacation. Frankly, I’m surprised her body held on as long as it did.

On the face of it, hers was a case without much hope. She came thousands of miles to be told that we could not fix her problem, and ultimately she died in our care far from home.  But she actually rode a roller coaster of hope. Initially she hoped for a cure, then dipped into despair when she heard there was none, and ultimately some degree of relief. Even though we could not cure her, we were still able to offer treatment. We controlled her pain. We treated her constipation. And most importantly, we promised that we would not give up on her, that we would continue to be with her through this journey, no matter what happened.

We have all had cases that are sad. Young patients, tragic death, tight families, challenging social dynamics – most of us have seen a lot of cases like these. For some unknown reason, this patient was one that crept into my subconscious, waking me in the night with concern. I can say without reservation that I gave my best effort to care for her. We navigated a tough situation and supported her and her daughter as best as we could. It took a physical and emotional toll on me, and I was completely spent by the end of the week. At the same time, I feel very fortunate to have had the chance to meet her and to be her doctor. Developing caring relationships like this with patients reminds me why I went into medicine. To O.H. and her daughter – I hope you both find peace.

I think I’ll end here and listen to “No Woman, No Cry.”

Brett Hendel-Paterson

Dr. Brett Hendel-Paterson wears several varied professional hats. He is board-certified in internal medicine, pediatrics, and palliative care. He is a med/peds and palliative care hospitalist at HealthPartners Regions Hospital in St. Paul, MN. He also has tropical medicine training with a CTropMed® from the American Society of Tropical Medicine and Hygiene (www.astmh.org), where he is a counselor with the clinical group. He is an assistant professor of internal medicine and global health at the University of Minnesota (www.globalhealth.umn.edu), and he is a codirector of the University of Minnesota Global Health Course.

His professional passions and interests span medical education, palliative care, health disparities, internal medicine, tropical/travel medicine, and immigrant/refugee health. When he is not attending he is active working with the global health track in the University of Minnesota internal medicine residency.

He received his undergraduate degree from Grinnell College, attending the University of Minnesota-Duluth for medical school, and the University of Minnesota for his med/peds residency.

Outside work, he spends his time chasing down his two sons in elementary school, enjoying the outdoors, exercising, cooking, and music. His recent diagnosis of Chronic Lymphocytic Leukemia in the summer of 2013 has required some significant work/life rebalancing and has underscored the importance of caring for patients in an empathic and kind manner in times when many are feeling particularly vulnerable.

3 Comments

  1. J R Hendel, MD on April 15, 2016 at 12:46 pm

    Brett:
    A beautiful story. Masterfully handled. Congratulations.
    Dad

  2. Connie Seltz on April 15, 2016 at 12:51 pm

    Brett: This is a beautiful story that illustrates your caring and sensitive heart. I am joyful knowing you are a physician. The world is a better place. Well done!

  3. Andrew Eagle on April 15, 2016 at 1:29 pm

    An article that is both tragic and inspiring in its compassion. Anybody who has had anything to do with serious illness has at some time considered how it is for the doctors and nurses… and everybody hopes for the kind of caring and personalised attitude you have voiced in this piece.

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