Telling the Truth, Having Faith, and Finishing Business
Interview by Abbey J. Porter
MICHAEL LEVY was a medical student when he discovered his calling: caring for the gravely ill. He became a pioneer who helped to bring modern hospice and palliative care to the United States—and to cancer care. As head of pain and palliative care at Fox Chase—a program he founded 25 years ago—Levy strives to reduce the suffering of patients and their families and serve as a guide on their journeys with cancer
As a palliative care physician, what kinds of services do you typically provide?
We treat pain and other physical symptoms and help the patient and family cope with any emotional or spiritual distress. We’re involved at all levels of the cancer-care continuum, from diagnosis to acute pain management to managing chronic post-surgical pain, as well as in dealing with end-of-life issues.
What are your goals in working with patients?
We try to get a sense of what’s causing their symptoms so we can provide relief—and to find out what the patient’s goals are. A patient might find that if they take enough medicine so their pain is a 2 out of 10, they’re too sleepy to do what they want—but if we lower the dose so they’re a 4, they can go play with their grandchildren. It’s really about quality of life.
How is palliative care important specifically to oncology?
Palliative care is the completion of cancer care, not its antithesis. We palliate throughout the disease continuum, and at some point there may be more palliation than anticancer treatment, but as clinicians we don’t ever want to have to say to a patient, ‘There’s not anything more we can do for you.’ We’re going to do everything we can to maintain the quality of their life for as long as they live.
How did you become interested in end-of-life care?
When I started out in the early Seventies, the dying were described as medicine’s poor. They were the ones who needed the most but were getting the least; people were uncomfortable being with them. Once we learned, from programs like St. Christopher’s Hospice in London, how to help terminally ill patients and their families cope with advanced illness, it was a matter of bringing that practice to the American healthcare system, and to oncology.
What did you find personally appealing about the work?
During my residency, I realized that I liked caring for people who were truly ill; I liked supporting them and their families. They were very appreciative, and I continue to feel privileged to care for them during a very intense period of their lives. This kind of care requires a therapeutic presence that goes beyond medications.
Does religion or spirituality affect how you approach your work?
I think if you don’t have some faith, it’s hard to do this work. I look at my religion, and the main thing I get out of Judaism is that we have a deep responsibility—called Tikkun olam—to make the world a better place. Part of my goal is to make sure the patient and family are comfortable with what’s happening based on their cultural and spiritual beliefs.
What is your role when patients are in end-of-life situations?
When people know they are going to die and you come into that compressed part of their life, there’s something I call “enforced intimacy”: You learn more in the first couple hours than you would if you were dating someone for six months. They tell you all of their stories: of what hurts, and their families, and what issues they want to resolve, and you get swept into their life because to give them a good death you have to help them resolve these issues.
What is the most challenging part of your job?
We thought it would be caring for dying patients that would cause burnout in our field. But the real challenges come when you can’t get a patient and family to a place you would like them to be—when there’s a lot of unfinished business, when you don’t think you’ve done enough or been as good as you can be.
What moments are the most satisfying?
It’s rewarding to help people to understand their personal journeys and make choices to get the care they need. Once I had to explain to a 57-year-old woman that her disease had progressed and that she was too ill to try an experimental drug. I told her I’d like to refer her to our hospice program. She said, “You know, I’m really lucky.” When I asked why, she said, “Most people don’t know when they’re going to die. I have some things I want to do, and I know that I should do them now.”
Sure. There can be a tremendous amount of denial. But the patient and family will have more satisfaction if you are clear and you and they share the same expectations. False hopes can be disabling and prevent patients from finishing their end-of-life stuff.
Palliative care needs to be offered early enough to be effective. To not let people know they can have pain relief—that they can go to Disney World or whatever they want to do—is not being sincere and truthful. The cancer will be truthful, and the cancer shouldn’t progress and make the patient and family feel their doctor lied.
Do you worry about taking away patients’ hope?
We don’t try to take away hope; we try to align it with realistic goals. Simply telling a patient what’s happening and what you can do about it isn’t negative. It’s about saying, ‘You’ve come to me to help you get through this journey. I’m going to make sure you get the best care there is—to live as well as you can for as long as you do.’ It doesn’t get any better than that.
To read more about Michael H. Levy, click here.
For more information on the pain and palliative care program, click here.