One Oncologist’s Firsthand Experience with Serious Illness: What Your Patients Want
There’s really only one way to identify how patients are coping with serious illness: by asking them, according to Thomas J. Smith, MD, FACP, Director of Palliative Medicine, Johns Hopkins Medical Institutions, Baltimore, MD.
At the 2018 ASCO Quality Care Symposium, Dr Smith spokeabout his own brushes with several serious illnesses, including aortic aneurysm and a diagnosis of prostate cancer. “I want to help you identify how patients like me are coping with illnesses, by asking about our prior experience,” Dr Smith said.
Dos and Don’ts
“The take-home message is, the diagnosis of any serious illness is ‘an existential slap,’ to quote Nessa Coyle, a specialist in end-of-life care at Memorial Sloan Kettering. Your patient, like me, may not be able to focus on much for a while. Some recognition that this can be upsetting is really welcomed,” he advised.
Don’t assume that your patient understands the big picture about survival, treatment options, and treatment toxicities, he said. Don’t give bad news over the phone, unless there is no other alternative, and always ask if patients want to discuss what their diagnosis means in terms of their prognosis.
What Patients Want
According to Dr Smith, most patients really want answers to the following key questions:
- Is this curable? “We lay awake thinking about these things anyway, so it’s not as if you’re breaking new ground for us,” Dr Smith said
- If it’s not curable, what can be done about it? Patients want to be provided with actual numbers
- Finally, what will the treatments do to me?
Ask during treatments—and at each visit—how the patient is coping, and ask the same question of the patient’s family. “You might be surprised at what you hear,” he said.
Recognize that some encouragement from the patient’s oncologist goes a long way for patients. “Saying something like, ‘Hey, you’re really hanging in there. You should be proud of yourself,’ can make a huge impact,” Dr Smith recalled. “I’ve heard that from 2 of my doctors, and it was very important to me at difficult times.” Hearing from someone who has had a similar experience can also help immensely, but when in doubt, remember that a hug goes a long way.
Fear and Depression
After finding out that his prostate-specific antigen level was rising, Dr Smith was overcome with concerns of debility and death from his prostate cancer. He began radiation and androgen-deprivation therapy (ADT), and within 2 weeks he was experiencing behavioral changes, mood swings, fatigue, muscle and strength loss, sleeplessness, and incessant hot flashes and sweating. Dr Smith remembers dripping on patients during procedures. This, he found, was when he was most in need of encouragement.
For patients diagnosed with a serious illness such as cancer, remember that medications and talk therapy really do work, he said. Ask the patient what he or she is most afraid of, and keep in mind that expert information, tailored to what the patient most fears, really helps.Dr Smith had sexual side effects and muscle loss as a result of restrictive lung disease, and he lost 50% of his arm and leg strength, despite daily workouts.
Because of his use of ADT, Dr Smith also suffered a ministroke, and when he began taking duloxetine (Cymbalta) for ADT-associated hot flashes, he became depressed and suicidal. He couldn’t exercise or run (his lifelong passion), and he was eventually hospitalized for a week to prevent him from committing suicide. He then found a study that cited a 41% increase in depression among individuals receiving duloxeine. “I wish somebody had told me that,” he emphasized.When he stopped taking the drug, all the suicidal notions went away, and his mood was stabilized with mirtazapine. Dr Smith’s message for patients with a serious illness is, “If you take nothing else away from what I’m saying, take this: do not kill yourself. Your family will never be the same.”
In addition to physical side effects, he suffered significant financial toxicity. He also turned in grant money, because he had no energy to finish his research projects, he was extremely anxious about keeping his job and health insurance, and the mere thought of starting another program sapped his energy.
Address this financial toxicity, he advised. “Remember that no one will bring up work or money issues unless you do,” Dr Smith said.
“Finally, just be prepared to listen. That’s probably the biggest skill that I’ve admired in my medical care team,” Dr Smith concluded.
In my medical oncology practice at Johns Hopkins, I see approximately 4 patients with nonmetastatic NSCLC per week. Most of these patients are referrals from either pulmonary medicine or thoracic surgery. A patient with early stage disease initially sees a pulmonologist for diagnosis and may then be referred to a thoracic surgeon. The thoracic surgeon may refer the patient to us in medical oncology if there is an indication to enroll the patient in a clinical trial or for systemic therapy. In a community oncology practice, patients tend to go to surgery first and are then referred to the medical oncologist for adjuvant chemotherapy. In academic centers, it is more common for patients to be seen in a multidisciplinary setting.
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