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Ghosts 2: Understanding Fear & Death

Bolwell, Brian J. MD, FACP

doi: 10.1097/01.COT.0000527887.96910.62

As a doctor, it's imperative to communicate with your patients from the moment the relationship begins. I find myself with each passing year, and each passing patient, giving pause to reflect on not only how I'm communicating, but how I'm heard and understood by my patients. More than how I feel, it matters how my patients feel.

One of the keys to being a good physician is to have an understanding of what your patients are going through, especially what they are thinking and not saying. It is clear that newly diagnosed cancer patients are scared. Fear is their overwhelming initial emotion. After that, some become highly analytical, scouring the web for data about their diseases. Such patients come to clinic armed with printouts from articles they have found about the latest treatments. Some believe that modern medicine is limited and research different types of alternative therapies. Some become depressed, and some regress.

I am convinced that uncertainty makes all of these emotions worse. That is why getting in to see a doctor rapidly is so important—why access is so important. Most patients have reduced anxiety if a treatment plan is discussed, defined, and agreed upon. Once you have a plan, then you can execute it. Every day is another step in the plan. As a patient, you sort of soldier on. A routine develops. There may be variations to the routine, and clinical issues may necessitate a change in plan, but for the most part a treatment plan dampens the level of anxiety that patients experience.

I would hope that any person with basic empathy can understand these emotions that arise when faced with a diagnosis of cancer. But can you really understand, if you have never been seriously ill? I doubt it.

I thought I could when I first became an oncologist. And I thought I did understand, at least on one level. Looking patients in the eye; getting to know them, their families, their concerns, their hopes—it's not hard to understand the enormity of what cancer does to people. But I did not really understand how illness can warp your thinking and consume your thoughts until I became seriously ill about 20 years ago.

The details are not important. My heart was a mess; I was in an ICU on an intra-aortic balloon pump for quite a while awaiting open-heart surgery. I was a physician, not far removed from training. I knew what the prognosis was for younger patients with a medical illness that required a pump. My mortality was staring me in the face. Fortunately, I had a good outcome. But, life is and was noticeably different. Your life is forever changed.

One way to describe what changed is to use a movie reference—I love movie references. Shortly after I returned from the hospital, a superb movie was released entitled “To Gillian on Her 37th Birthday.” Gillian is played by the wonderful Michelle Pfeiffer, and her husband, David, is played by Peter Gallagher, who is the star of the movie. Gillian died in a boating accident and David has been grieving ever since. The movie takes place in a beach house, on the second anniversary of Gillian's death. David roams the beach daily and has long conversations with Gillian's ghost. They often talk of their daughter, who unfortunately has been emotionally abandoned by David after her mother's death. There are other characters involved, but the best scenes are between David and Gillian. Gallagher does a superb job displaying absolute grief and despair. The movie is a character study of David's evolution over that weekend. Ultimately, he says goodbye to Gillian—painful as it is—and moves forward with his life. Her ghost goes away. We bought the movie and I watched it repeatedly.

You see, I identified with Gillian's ghost.

I thought about dying a lot, and what life for my family would be after I died. I was not paralyzed by this; but up until then—even while taking care of so many cancer patients who did not survive—the reality and inevitability of my own death was compartmentalized someplace way back in my brain, not a part of my conscious thought or everyday life. Then after the illness, the compartment door sprang open and it became front and center. You think about your illness and mortality every day—multiple times a day. Like breathing, it is always there and happens without thought. In some ways it was liberating as I made choices on a different timeline with my own, new sense of prioritization. We splurged on family vacations. I thought about what added value more than my previous duty-bound tasks. But the issue of death, my death, was there all the time.

Over the years, I think about it less. But it is still there; persistent.

If you talk to cancer survivors, it's there for them as well. For a very long time. Forever.

So how is this of any use for all of you who care for cancer patients? Well, first of all, it's a good idea to think of minority rights. Majority opinion does not always lead to the correct path. Many cancer caregivers believe we should publicly celebrate the completion of a patient's course of chemotherapy. However, a minority of patients in your cancer center are fully aware that their death is right around the corner. Their prognosis is fully defined. Nobody is more important than these patients. They and their families are following their path as best they can, even if the path is palliative. Treat them with respect, consideration, and empathy. Consider that loud celebrations when another patient completes chemotherapy might be especially painful for them. Think about the patients who can't help but think of their mortality. So conduct more private celebrations. Walk in the shoes of those who will not be with us next year.

As their doctor, it's vital that you communicate fundamental facts about their prognosis, treatment, and disease. Get them to the place where they can receive the medical information they need to hear. Try to connect with all of your patients on some sort of personal level. Take the time to do so. Talk about their work, their school, exercise...something, anything. Get personal. Be human. So many patients arrive with a glazed look in their eyes. Do whatever it takes to remove that glaze and focus on all the things in their life that are continuing. I generally try humor. If you can connect, then dealing with the serious subjects that we deal with gets a bit easier. Once connected, then you give them an opportunity to open up about undiscussed issues, which frequently are the scariest things of all.

Acknowledge the challenges. It's OK to say that the situation sucks if it does.

Sometimes patients want to cut the cord with you prematurely after their primary treatment. Usually this is because the grim nature of their treatment, the reality of their fear, and the full realization of their own mortality is so intense that simply showing up in your building is a bit too overwhelming. If so, it's a good idea to talk it out with them, and consider a compromise about scheduled follow-ups.

Obviously an entire literature exists about the long-term psychological ramifications of a cancer diagnosis. Even if you think you “get it,” consider the possibility that there are more things to understand.

So, to all of you cancer clinicians out there, if you are wondering why your patient who has been in remission for a few months, or even a few years, is not as euphoric as you might expect with their latest negative test, consider that the issue of their own death does not go away when you pronounce them to be in remission, or even when you say the word “cure.” It lingers for a very long time. Just ask them....or ask them if they identify with ghosts.

BRIAN J. BOLWELL, MD, FACP, is Chairman of the Taussig Cancer Institute and Professor of Medicine at the Cleveland Clinic Lerner School of Medicine. Cleveland Clinic is a top 10 cancer hospital according to U.S. News & World Report.

Brian J

Brian J

Straight Talk: Today's Cancer Centers

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