The Hardest Conversation - Part 1
This article in the New York Times has spawned some discussion in the blogosphere, and I would like to chime in.
Many years ago I remember seeing a woman in my office with an acute abdomen. She was in her mid-60's, and as I recall, I was very suspicious of a bowel obstruction. Although colon cancer was foremost in my mind, it turned out to be ovarian cancer.
Through the next year or so of surgery and chemo, remission and relapse, she came to me for acute care for non-cancer related problems as well as her blood draws, because her insurance was such that all blood had to be sent from my office. I never minded this, as I've become quite adept at phlebotomy and we had some wonderful visits.
I've read that what people with terminal diagnoses fear is abandonment. They also fear pain, but they feel they can talk to their doctors about their pain, and hopefully it can be controlled. But they're afraid of people being too afraid to talk to them or be with them because they are dying that they're going to be alone. Even if they aren't literally abandoned, if everyone around them (including the doctor) is too uncomfortable to talk about it, then they have in fact been abandoned emotionally.
It turned out that I was the only one who ever talked to her about dying.
Late in her disease, she told me that the oncologist never spoke of it. Only about what treatment they could try next, and so on. She and I always talked about it very openly. I always made it a point to tell her explicitly that I would always be there for her; I'd see to it that her pain was controlled; and that I'd take care of her family after she was gone. She understood what was happening, and told me how much she appreciated my willingness to address it directly.
A few weeks before her death, she obstructed again. Miraculously, other than that she never had any pain. She had exploratory surgery, but her entire abdomen and pelvis was socked in with tumor. There was nothing to do but close her up and send her home with hospice.
I went to her home, which she shared with her daughter and her family, to visit her on a Thursday morning to say good bye. She still had no pain. Her body looked like a concentration camp victim's, but the brightness of her eyes was striking. Peaceful; almost angelic. We talked. We laughed together when she told me about the surgeon telling her to "Come back in two weeks so we can take the staples out." She wasn't going to be here in two weeks, and everyone knew it.
We talked of her children and grandchildren. Her son and his family were coming up from Virginia that weekend for what everyone understood was a final visit. She spoke of a dream she had had the night before: her father was calling to her, telling her it was time to come in. She didn't, of course. She woke up instead. But she joked with us that when her mother called, then it would be time to go. Dad could be ignored for awhile, but not Mom!
When we had said all that needed to be said, I leaned over and hugged her gently. I thanked her for letting me be part of her life, and told her again I would take care of her family. She thanked me too. And I said good-bye.
She died on Monday.
I don't know why I've never shied away from discussing a terminal illness, nor why I do not find it awkward to talk with patients who are dying. They are intense, important conversations, but they are issues I feel competent addressing.
Perhaps it was the death of my mother, which occurred right at the end of my internship. I was devastated at the time; it felt like the worst thing in the world. What happened, of course, was that life went on. I had children; they grew. I started my practice; it flourished. I was blindsided by a divorce (which was even worse) which I also survived. Somehow, the idea took hold in my soul that death was not the enemy. It is a part of life, and a very important part of my job is dealing with patients who are going to die. (Technically, all of them.)
I applaud the efforts described by DB to incorporate training in these discussions into educational curricula. Hopefully, the next generation of caregivers won't find them quite so hard.