In the penultimate segment of her interview, Dr. Meier shares two powerful experiences that changed her understanding of medicine and the complex role the physician plays in society.
Q. Can you share any more experiences that shaped your development or helped make you so passionate about what you do?
A very important and influential patient for me was a young woman here at Mt. Sinai, 24 years old, with a new diagnosis of acute leukemia. The end of the story is she was cured with a bone marrow transplant, and she’s fine.
Unlike when I was an intern, this is now commonplace because of advances in research that have made a huge difference for young people with hematological malignancies. But when she came she had a marrow packed with blasts, excruciating skeletal pain everywhere, shortness of breath because there was sludge going through her lungs, panic attacks and anxiety.
It was very difficult to manage pain that was undertreated by the house staff because they didn’t know how to manage pain. And she had an older brother who was a substance abuser and her parents didn’t want her to have any opioid analgesics in spite of the severity of the pain. Talk about a multi-dimensional, complex palliative care situation!
The audiences we were dealing with were the patient, who—the goal was cure, it wasn’t peaceful death, it was cure—but her physical symptoms, her emotional distress, her spiritual, existential distress were enormous.
Then her family was terrified that they’d have another addict on their hands.
Then we had the house staff and the nurses on the floor who were treating this patient as a manipulative drug-seeker because she was sitting on the call bell asking for more meds—because she had been undertreated for the pain. And they started kind of avoiding her and treating her as if her pain was not legitimate.
The palliative care team spent 2 to 3 hours at her bedside off and on during the day, frequently. The hematologist was there for maybe 10 minutes in the morning looking at the counts and writing the orders.
They cured her… but we got her through it. So that really had a huge influence on me in terms of understanding at a visceral level why palliative care is so important from the point of diagnosis.
There’s one other cancer patient I had that really powerfully influenced me because of what I learned from her oncologist. This was a woman about 4 or 5 years ago who had non-small-cell lung cancer and had a superb oncologist that had, with one thing and another, kept her alive for 4 years—which is a very long life expectancy with metastatic disease…
She was an actively practicing psychotherapist, and it became clear to her in talking with her oncologist that he was uncomfortable talking with her about what would happen when the treatment stopped being effective. And she was the kind of person who wanted to know. And wanted to be in control. And was quite worried about the dying process, what it would be like, and how she would be cared for, and how her family would be supported.
When she asked these kinds of questions, he just kept saying, ‘Well, we have more treatments. We don’t need to talk about that.’
So she found me on Google… and came in to see me, and through her own initiative basically got palliative care added as an additional layer of support. And she actually lived another 2.5 years, and her oncologist and I co-managed her for that period.
So I was dealing with things like headache and fatigue and pain and talking to her college-age daughter and her husband about what to expect and what the care plan would be like. And in that last half-year, her metastases—which had been stable and really not adversely affecting her cognitive function—started to effect her fatigue level, her attention level, and she realized she had to close down her practice, because her physical needs were growing.
And one day she came in and said she wanted to talk to me because her oncologist had recommended something called intrathecal chemotherapy—which is administering chemotherapy through a reservoir implanted in the brain that directly provides chemo to the metastatic lesions in the brain.
And she said, ‘what do you think about that?’ And I said, ‘Judy, this is not my area of expertise, so let me talk to your oncologist about what he’s hoping to accomplish and one of us will get back to you.
Now she is roughly 5 and half years past diagnosis at this point—really long survival—and very good life during that time thanks to this oncologist.
So I called him up and told him about Judy’s visit, and there was a very brief pause and he said, ‘It’s not going to help her.’
And then we both paused… because I saw my role as support to both him and to her.
And I said, ‘Do you want me to encourage her to go ahead with it?’ And there was another long pause. And here’s what he said—and this is one of the biggest lessons I’ve ever had in my life—he said, ‘I don’t want Judy to think I’m abandoning her.’
It was so profound, because I realized that he was offering this treatment that scientifically he did not think was likely to help her, because it was the only way he knew how to show his care for her—how to show how much he loved her and cared for her—was to offer her another treatment.
He had no other alternative, no other way of conveying his care. Because his training did not provide him with any other ways of conveying his care. The only arrows in his quiver were “more chemo, more radiation, more surgery.”
That was powerful. And as soon as he said it out loud, “I don’t want Judy to think I’m abandoning her,” he immediately said, “We’re not going to do that.” And at that point she went into hospice where she lived much longer than anyone expected—as often happens.
And I was following her at home along with hospice and often would sit down and talk with her, and her top concern was that the oncologist had not called or come to visit. That was her top concern.
She was hurt that she hadn’t heard from him or seen him, because she wanted to thank him for saving her life. For giving her many, many years of good function and quality and time with her daughter and her husband and her patients and her friends, and she wanted to say goodbye.
She asked me to call him, and I did. I told him, “Judy would really like to see you.” And he said, “Why? I can’t do anything for her.”
That’s actually what he felt… that he could not help her, because he did not have a disease-focused treatment to offer her. So I explained, “She wants to thank you, to express her incredible gratitude for the fantastic care you have given her, and she wants to say goodbye.”
He had never before made a home visit, but he went. She told him those things. And that was the undone thing for her.
The other thing we don’t get taught in medical school is the powerful, primitive role of the doctor almost as Medicine Man. It’s a much deeper connection than the fact we got training in which drug to use for which cancer. And we don’t get taught about the power of that relationship, and the sort of transference of the patient to the doctor—not to mention the counter-transference of the doctor to the patient.
We don’t get taught about the obligations that go with that. You need to know to say to patients, ‘Thank you for trusting me to take care of you. Thank you for the privilege of allowing me to take care of you.” Saying to the families what it was about taking care of that patient that was so meaningful to you. That is what we should do and what we should be taught to do, and we’re not.
And this is what happened to Judy and her oncologist, and I’ve seen that a lot, where the oncologist or oncological surgeon, when the person is dying, disappears. And I know why they’re disappearing: because they feel that they’ve failed the patient.
But the patient doesn’t feel that way. The patient knows they’ve done everything they could do. And that patient connection is powerful and meaningful, as with family.
When the doctor disappears the patient experiences it as a rejection, that they failed the doctor and the doctor is rejecting them. And it’s so heart-breaking, because there’s so much suffering on both sides that’s completely unnecessary if we train people to understand that our role is more than managing the disease.
That wraps up part three of our chat with Diane Meier. You can read the final segment of her in-depth interview here.