Sick and Tired
"You told me you're tired--tired of all the transfusions, and tired of being sick. Do you want to stop all the transfusions, Nancy?" I asked the woman lying in the hospital bed.
She was silent. Her husband of nineteen years, sitting nearby, was silent as well.
"What are you thinking, Nancy, can you tell me?" I asked.
Nancy, forty-eight, was suffering from chronic muscle inflammation, severe lung disease, pneumonia and--most severely--from terminal myelodysplastic syndrome (MDS), a blood and bone-marrow disease for which she had to receive transfusions of platelets and red blood cells every other day.
Fed up with the transfusions, she'd asked to speak with the hospital's palliative-care doctor--me--for help in rummaging through her various treatment options. In fact, these were limited to two: to continue the transfusions, or to stop.
But without the transfusions, Nancy would likely die within a few days.
I was finding it extremely difficult to counsel her. For one thing, she looked so alert and vibrant--not nearly as sick as she really was. The only overt evidence of disease was the bruising on her arms and the constant bubbling of the oxygen tank hooked up to her nasal cannula.
She looked so healthy, I found it hard to accept the brutal facts: a white blood cell count of 0.34 and a platelet count of 7,000 (both about one-twentieth of the norm); the horrific scarring on her chest x-ray.
But there was no denying that these harsh truths were forcing her to consider letting go of life.
The only obstacle to this course of action was Nancy's ten-year-old daughter, Rebecca. Nancy was tired--but was she tired enough to say goodbye to Rebecca forever?
Staring straight ahead, Nancy spoke again.
"I feel like I'm not a good mother," she said. "Rebecca never knows, when she comes home from school every day, if I'll be home or in the hospital."
Tears welled up; Nancy wiped her eyes.
"I've been sick since Rebecca was one. She's never known me when I wasn't sick, and it hasn't been fair to her. It hurts. I can't go to school functions like other mothers. She needs a mother who's not sick."
Nancy was right, I reflected--it wasn't fair. She'd shouldered far more than her share of sickness. But now, sitting in the darkened hospital room, she was holding onto the last vestiges of tomorrow...of life.
Mother's Day was less than a week away.
This was the hardest consult I had ever done. As a parent myself, I felt my heart crying out for Nancy, for her disease to suddenly disappear, for things to be all right.
But I knew that things would not be all right, and that she was staring death straight in the eye.
As I sat there, wrestling with my own sadness, I felt something change.
Suddenly this was no longer a consult--it was simply one parent witnessing and attending to another parent's suffering and terror.
There were no words I could say that would make everything better or ease Nancy's overwhelming grief. But I wanted her to know, in a way that went beyond our doctor-patient relationship, what a wonderful mother she was, and that I understood her anguish.
Hesitantly, searching for each word, I began, "Rebecca is so fortunate to have you as her mother...You love her so much and have instilled her with an appreciation of life that others will never know or understand. She will always remember you, and you will always be her mother, the best mother any child could have. Believe me, to her, there is no better mother than you, and she loves you very much." Halting though they were, the words felt right.
We talked for an hour or more without coming to a conclusion. At the session's end, I told Nancy, "You and your husband think about what we've discussed, talk it over, and I'll stop by tomorrow. These are hard decisions, very hard decisions, so take your time, there's no urgency. If you have any questions, please call me at any time."
Leaving the room, I silently hoped that Nancy would choose to continue the transfusions--to be a presence in her daughter's life, to breathe the air of life for one more day. But I felt inadequate and disheartened, unsure that I'd been able to persuade her that continuing to struggle was worth it.
Nancy haunted me the whole evening and into my sleep. As a palliative doctor, I'd seen so many deaths--sudden, traumatic deaths, long, drawn-out deaths, mothers and fathers saying goodbye to young children, grandparents saying goodbye to grandchildren. But something about Nancy affected me profoundly.
Perhaps it was the death of my own parents when I was quite young, or the death of my wife, leaving me with two daughters. Maybe it was both.
I stepped into Nancy's room the next day feeling anxious and afraid.
"Dr. Rousseau," she said, "I want the transfusions."
She went on, "I just have to have them. I'm okay with home hospice, and even inpatient hospice when the time comes. But right now, I just can't stop."
It was clear that Nancy felt she couldn't leave Rebecca--not now, not next week, and especially not right before Mother's Day.
I knew that we'd need to return to this discussion, if not within the next few days certainly within a few weeks.
But for now, for me, for all of us, tomorrow looked a whole lot better.
About the author:
A hospice and palliative medicine physician for the past thirty years, Paul Rousseau has had some 350 pieces published inPulse--voices from the heart of medicine, Annals of Internal Medicine, JAMA, Blood and Thunder and elsewhere. "I've been writing my whole life, but I have used writing as therapy ever since the death of my wife. I enjoy writing about the patients and families who allow me the honor of entering their lives at such a frightening and vulnerable time."