Charlene was tough -- feisty, independent, and absolutely clear about what she did and didn't want. And she communicated all of that without uttering a word.
Some time before our palliative care team met Charlene, she'd been diagnosed with squamous cell cancer of the throat. This is a particularly nasty form of cancer, usually associated with smoking and drinking, and difficult to treat. Charlene had gone through radiation treatments and was left with a permanent tracheostomy -- a trach ("trake") that allowed her to breathe but took away her speech. Nonetheless, with hand gestures, the use of a notepad, and -- most of all -- a set of withering facial expressions, Charlene could always get her point across.
She'd been admitted once again for mucus secretions that she couldn't clear on her own. She had a pattern of becoming frightened and showing up in the hospital's emergency department. Invariably she would be admitted for a few days. She would get some breathing treatments and would then demand to go home TODAY. Her handwritten notes always capitalized that word, or else she would write I WANT OUT NOW! We would try to talk with her about the pattern and about how accepting some help at home -- a visiting nurse, for instance -- might help keep her out of the hospital. Shaking her head violently, she always declined. She'd been like that her whole life, her family said. Her sister told us that she hadn't been inside Charlene's house for over 20 years. So we would shrug our shoulders, and Charlene and her husband would leave the hospital. You know that someone has become a "frequent flyer" when the staff takes bets about how long they'll remain out of the hospital. Charlene had been admitted at least weekly for many weeks. And to the frustration of the cancer wing staff, she insisted on remaining "full code." If her heart or breathing stopped, she wanted everything possible done to bring her back to life.
On her next to the last admission, I suggested a drug that might dry up her secretions. The hospitalist, who was in charge of her care, and I discussed the pros and cons. To my surprise, Charlene agreed to try it, and to my even bigger surprise, she said it was helping and not producing the dry mouth that patients on the medicine sometimes get. I talked with her again about accepting help. "If I try harder I can stay out," she wrote. I told her that she already was trying pretty hard. Borrowing a line from TV's Dr. Phil, I asked, "How's that working out for you?" She responded with a look that I'd come to understand meant "you are an idiot doctor who doesn't know a thing about me," or something like that. I made one more pitch for a home health nurse, which worked about as well as all previous pitches. So with a bit of mucus rattling in her trach, Charlene and her husband once again set out for home.
No one was surprised when she was readmitted four or five days later. But on her third hospital day, we were surprised to hear a Code Blue -- a cardiac arrest -- called for her room. The cancer eroded through a blood vessel near her trach, and there was nothing the code team could do to save her.
"A blessing," someone on the cancer wing said. "I don't think so," I replied. "She clearly had something in her life that, to her, was worth living for. I think that explains why she never changed her code status."
Charlene had a bad death by the standards that we in hospice and palliative care usually measure deaths by. But to the very end she appeared to have the life that she wanted -- indeed, the life she insisted on. "Do not go gentle into that good night...Rage, rage against the dying of the light," the poet Dylan Thomas wrote. Had she heard those lines, I have no doubt that Charlene would have given me one of her looks, and then nodded in agreement.