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.
posted by #1 Dinosaur @ 6:15 PM
5 comments
5 Comments:
Dr. Dino, It is the same thing with a cancer diagnosis even when you aren't going to die. No one wants to speak of it and they don't want you to speak of it either.
They don't realize how unfair that is to the person fighting this disease. We think of it all the time. When we aren't allow to talk of it then it just kind of festers in there. I was lucky in that I had an oncologist who was alot like you. He talked of it with me all the time.
He was the only person in my life who allowed those conversations. What would I have done without him?
Hurray! Thank you for bringing up this topic! Because this is a HUGE issue in the home health nursing field. We are finding so many patients who are terminal, or else in very precarious situations, who have NO IDEA that they are either dying or are fairly close to the end. They all complain that their doctors are not telling them the "level of seriousness" about their prognoses. They fairly BEG us nurses to tell them "the truth". Of course, this is a very difficult spot for a nurse to be in---because we nurses are not doctors, and so we absolutely don't want to tell a patient anything like that without the approval of the doctor. We feel that the doctor should be the one to divulge the actual prognosis, which we can then follow up with supportive empathy and nursing care. Just this weekend I took care of a patient discharged from the hospital with end stage pulmonary disease, on BiPap, Oxygen, and all kinds of meds--and his wife stated: "The hospital nurse said that the doctor sent him home because they can't do anything else for him. Does that mean he's dying? Please tell me, nurse, tell me!" I called the doctor on the phone and he stated: "But I asked the patient if he wanted to be intubated next time this happens--so doesn't he realize how bad it is?" No, the patients don't realize. It's got to be spelled out for them. Anyway, thank you for this topic! (Just wanted to get that off my chest...didn't mean to preach or anything.)
Wonderful post, and I applaud you attitude and your approach.
I'm glad to say that I got fairly decent coverage of this in medical school. The docs who talked to us about it were uniformly good, and brought up a lot of the points you did:
That abandonment is worse than death (and that even when you are sending someone to hospice care, there's a way to do it that shows that you aren't abandoning them - often that's by saying that if there's another medical problem that comes up, they are welcome back).
That patients need, from their loved ones, to be forgiven - that everyone feels somewhat guilty for being sick and dying, and how to approach family members to explain to them that this needs to be done.
To say goodbye, and thank you, especially if you probably or might not be able to see a patient again. That it's better to say something like that and see them again than to never say it.
The message that they may have very few days left, but that those days can still be meaningful - that even if their life will be over very soon, it isn't yet.
Also, once, when I was fresh into clerkships, there was a young (30s) mother with cancer, two little girls. She was going to die and she knew it. She wanted her final message to her doctors and to people to be not to abandon dying patients. She requested that her last minutes be in the presence of, in addition to her daughters, all the students and residents, to give them the message to not flee dying patients, to fear death, not them. When her time came, they called all of us younger students and residents, and she sat and read a last story to her daughters, sang a song with them, and died. I remember the tremendous gift she gave to us, that she wanted to use her life and death for the benefit of others.
The moment was also filmed, and is used, at her request, by my medical school in teaching students this subject.
On the other hand, last week, I watched an internist bungle a conversation like this so badly that I could hardly stay there to watch. But the literature is out there, there are ways to teach about the subject, and there is no excuse for not doing so.
Great post...thanks for putting it on there. I hope some people take the message to heart.
I agree wholeheartedly that doc's need to be more open to talking about death and dying. When my mother was dying, almost three years ago, it was the nurses who were honest and told me it was terminal and suggested hospice, not the doctors.
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