I had been seeing my patient for 12 years. He and his wife frequently marveled over how much time had passed since we first met, as if celebrating his perseverance in standing down a terrible disease and the enduring friendship that ensued.
He had myelofibrosis, a cancer of the bone marrow that was particularly unforgiving. As the diseased bone marrow cells grow, they release substances that cause scar tissue to form within the marrow space — a process we doctors call fibrosis. The remaining normal bone marrow cells, sensing the unrelenting blight threatening their home, relocate to the spleen and, less commonly, to the liver.
These organs swell to accommodate their new citizens, which can hurt. But in doing so, they also encroach on the stomach and intestines, reducing the volume of food they can hold. As a result, people with myelofibrosis sometimes die from the consequences of low blood counts — bleeding and infections — but also of malnutrition, as the simple act of taking in adequate calories for sustenance becomes impossible.
Over the past few weeks, he had repeated hospitalizations for fevers and continued to lose weight. In the exam room, he sat in a wheelchair with his eyes closed, sleeping off-and-on, his arms covered with bruises and belly swollen with his enlarged spleen. His wife and daughter sat next to him. I think we all knew the end was near.
His wife accompanied him on every visit. After more than 50 years of marriage, they were inseparable, and a testimony to the phrase “opposites attract.” She was sunshine to his rain, Tigger to his Eeyore. If she commented on what a lovely summer’s day we were having, his retort would be, “I’ll probably get a sunburn.” When she celebrated his blood counts improving from a new treatment we’d instituted, he’d reply, “Well, they’re still not normal yet.” She always laughed in response, glance over to me, and say, “Oh, you know how he is!”
And I did. She loved him for his parsimony of words, and for his gruffness, which was partly an act to see how she’d respond, and so did I.
Not for the first time, I raised the idea of hospice care. The two lived independently, with their daughter a few miles away.
“I can’t imagine how you’re caring for him alone,” I said to her. “Even getting him to the bathroom must be a struggle.”
“It’s not so bad,” she said quickly. “We manage.”
“If we initiated hospice, it might be easier for you, to have an extra person at home to help out, and make sure he’s not in pain. We could even get him medicines without your having to bring him to appointments here,” I added, knowing that it took her an hour to get him dressed and into the car. He opened his eyes briefly as we talked but didn’t say anything and closed them again.
She shook her head. “I don’t need anybody.”
“Mom, you do!” her daughter interjected, eyes welling with tears. “You can’t handle him anymore. He’s too big to lean on you. He’s too sick. He could fall, and you wouldn’t be able to get him off the ground. I have to work during the day, so I can’t be there. Why won’t you let the doctor get you some help?”
She shook her head again, resolute. “I met this man when I was 14 years old. We got married three years later. And I made a promise that I would care for him through sickness and health ’til …” She paused for a moment, choosing her words. “Well, until the end. I am not letting a stranger into my house to help. I made a promise.”
“You have been caring for him,” I said, as gently as I could. “That won’t stop with hospice. “
She crossed her arms and thought about what her daughter and I had said. Then she turned to her husband.
“What do you think? About hospice?” she asked him.
He opened his eyes at the sound of her voice. I wasn’t sure how much of this conversation he had been listening to. “Whatever you say,” he answered, and closed his eyes again. I didn’t know how to interpret that, but his wife did.
“We’ll consider it,” she said to me, in a way that really meant, “We’ll pass on hospice.”
They left the exam room and walked down the hallway slowly, my patient’s wife pushing his wheelchair, his daughter carrying her coat and purse.
It was the last I saw of him. The following week, he had a cardiac arrest at home and died, with only his wife in attendance.
Of all the obstacles to initiating hospice that have been cited, from physician delays to inadequate resources, this one — the devotion of wife to husband, or child to parent, and their reluctance to welcome another into that bond — is the hardest to quantify. She later told me it was about as good a death as they could have hoped for, all things considered.
I think even her husband would have agreed with her on that.
Dr. Mikkael Sekeres (@MikkaelSekeres) is director of the leukemia program at the Cleveland Clinic.
