Recently a Washington Post article http://www.washingtonpost.com * noted an article in Health Affairs by Diane E. Meer, M.D.: “The woman came into the office with her husband, looking totally out of place amid the frail geriatric patients at my palliative care clinic. Elegant, slender, with a gorgeous head of curly blond hair, she was nothing like what I expected when she had called a couple of weeks earlier, asking for a consultation. Her cancer story, too, was atypical.”
“The woman, a 50-something practicing clinical psychologist, had been diagnosed with stage 4 non-small-cell lung cancer six years earlier, after experiencing a persistent cough. By the time her tumor was removed surgically, the disease had already spread outside the lung, so the patient received chemotherapy and radiation treatments. With each recurrence or progression of disease, the patient’s oncologist thought of a new approach, and each one worked. The patient was able to maintain her busy practice and travel. She hoped she might turn this cancer into a chronic disease instead of a death sentence.”
“Given how well she appeared to be doing, I wondered why she was in my office. We typically see patients with pain, fatigue or shortness of breath. The woman had none of these symptoms. What was going on? The patient described herself as a control freak. “Better to know and plan for the worst,” she told me. “That way I don’t have to worry about it.”
“Over the years she realized that her oncologist was unwilling — in her view, unable — to talk to her about the “what-ifs?” of her cancer. What if this next treatment doesn’t work? What if my disease progresses and I can no longer function the way I want to? Will I be in pain? Will I suffocate? How will my family take care of me? Where and how will I die?”
“Healthy and happy as the patient appeared, the uncertainty and the unknown were consuming her.”
“Her oncologist’s reaction to each setback was to redouble his efforts to get the cancer under control. The patient’s “what-ifs?” were met with comments along the lines of “We don’t have to worry about that.”
“The patient reasoned that her oncologist was unable to face the possibility — indeed, the probability — that she would die of this disease. She came to me, hoping I could give her straight answers.”
“We talked about possibilities. Given the unusual course of her cancer, I admitted the real possibility that her oncologist could continue to find ways to keep it at bay. I explained that I could become a part of her treatment team to focus on her quality of life, provide the straight answers and participate in her desire to plan for the worst while continuing to hope for the best.
“We talked about what she might expect as her lung cancer progressed, including increased fatigue and weakness, pain and shortness of breath, and exactly how we could manage these. She wanted to know what it was like to die. We talked about what the moment of death was like: slower and slower breathing, with pauses in between breaths, and during one of those pauses, she would die. She asked what would happen if she had pain and symptoms that couldn’t be controlled. I explained that virtually all symptoms were manageable with palliative care. If necessary, there was the option of sedation, but it was quite unusual to need that.”
“We talked about hospice, which would include services such as a team available to come to her home 24-7, as well as equipment, medicine and training and support for her husband and daughter. If things ever got too difficult at home, she could go to an inpatient hospice setting with around-the-clock nursing and medical care.”
“Toward the end of our conversation, she said she was worried that her oncologist would feel upset that we had met and that he might not be comfortable teaming up with me on her care. I was worried about that, too. I offered to call him — and did. To my relief, he agreed to work with me.”
* to read the full Washington Post article “Teaching doctors when to stop treatment” by Brett Ryder highlight and click on open hyperlink http://www.washingtonpost.com/national/health-science/teaching-doctors-when-to-stop-treatment/2014/05/19/e643d190-caf5-11e3-93eb-6c0037dde2ad_story.html
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Jonathan M. Metsch, Dr.P.H., is Clinical Professor, Preventive Medicine, Icahn School of Medicine at Mount Sinai; and Adjunct Professor, Baruch College ( C.U.N.Y.), Rutgers School of Public Health, and Rutgers School of Public Affairs and Administration.
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