50 and FreeErin Vipler, MD, FACP May 9, 2023
I met Ms. L at perhaps her lowest point. She had been struggling with mandibular cancer for 2 years and had undergone every treatment imaginable. The chemotherapy made her so weak that she could no longer stand. She was down to a mere 85 pounds on her tall frame. The radiation ate away at her neck and jaw causing terrible wounds and pain. She could no longer eat or speak and was forced to write to communicate, but even that was becoming more difficult because of her weakness. The tube feeds were causing relentless nausea and diarrhea and didn’t seem to be helping her add back any weight. She seemed to sink into the bed, unable to escape the downward pull of her illness.
Her mind continued to work hard throughout her illness, even when her body couldn’t. She knew everything that was going on and asked as many questions as she could. She advocated for herself and tried to keep at least a little of the burden off her husband. She took notes and was sure to remember everyone’s name. Over time though, her body became nothing more than a hinderance, a weight to bear. She could no longer muster the strength to write, no longer fight the pain long enough to ask questions. She was trapped, without a voice and without the ability to move.
She had been enrolled in hospice for several months since hearing that there were no more treatment options for her cancer and had been in and out of the inpatient hospice center many times with uncontrolled symptoms. This time, we got the report that she would be coming in for pain. She had continued tube feeds and medications every 4 hours around the clock at home, and her husband had been diligent in caring for her.
Her devoted husband dedicated his life to helping her over the last two years. He worked from home so that he could be there for her, and he always slept with one eye open in case she needed something. The more intense her illness became, the more he lost himself in her care. He had no medical background, but soon became well versed in wound care, tube feeds, catheter maintenance, medication regimens and turning schedules. The burden was just as heavy on his shoulders as it was on hers.
When she arrived at the inpatient hospice center, her symptoms were surprisingly manageable. But we learned she had other reasons for being there. As we talked to her about how she was doing, all she could write on her paper was “50 and free.” Her goal for the last two years had been to make it to her 50th birthday, which now was just 1 week away. We discovered she was looking for permission to stop the tube feeds and, in her words, to finally be set free from the body she was trapped in.
For the next 7 days, she gradually withdrew, and her body began a slow transition. With her husband in the room, and her dog laying at her feet, she allowed herself to be comfortable, to be cared for and to stop fighting. Her husband got to spend the time really being her husband and processing his own emotions without the burden of being her caregiver.
Then the day finally arrived, and she had made it to her 50th birthday. Her room was decorated, and everyone sang to her. She had made it. The relief was palpable throughout the building. She achieved the goal she had worked so, so hard for. That day, the sense of peace that she felt radiated off her, and that evening just before midnight on her birthday she was finally set free.
I tell her story to honor her and the amazing person she was, as well as her husband who was everything she needed. She did all that she possibly could to survive her illness and thrive despite it. She has forever impacted how I view goals of care, and my understanding of the ways that goals can change over time and solidify one’s resolve. The importance of reaching her 50th birthday is what propelled her forward, fighting against a sick and dying body. And now she will forever get to be “50 and free.”