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I'm Dying To Know


In some ways, I consider myself lucky. I know this is a strange comment from someone diagnosed with Stage IV breast cancer. I say this, though, because the first steps on my journey with end-stage cancer were undertaken with the help of a team of health care professionals who excelled not only in medicine, but also in communication.|

Communication in health care is often overlooked. Data on doctor-patient communication is rarely collected, and there are few measures of success. Yet, I believe good communication'both between members of the health care team and between providers and patients'is essential for good treatment.

With one glaring exception, which I wrote about in January, I was blessed with proactive doctors from the day I walked into my primary care physician's office, certain of my diagnosis. Dr. Lelchuk immediately knew I needed imaging tests and a biopsy of the suspicious area.  She went above and beyond by personally getting on the phone with a trusted oncology surgeon to set up an immediate appointment.

The waiting room at the cancer center was comfortable. We sat there, perhaps six women, all dressed in white cotton robes as if we were at a spa awaiting our manicures and pedicures. Some women, probably there for an annual mammogram, seemed relaxed and even chatted. One was there for follow-up to make sure that cancer had not recurred. And a few sat quietly, nervous. Like me, they were waiting to find out if they had cancer. Unlike me, they had no idea what to expect.

One by one, they called women in for their mammograms.  Some were called back again for additional imaging. Shortly after my turn the office seemed to jump into hyperdrive. Senior doctors and young fellows converged in a room where they looked at the images.  We women sat just outside that room as they spoke in low and urgent voices, trying to make out their garbled sentences. The waiting room had mostly cleared out at this point. I was sitting next to an elegant-looking African American woman in pearls.  She looked as if she was about to throw up. The obvious urgency in the office terrified her.

Her anxiety made me think about how much we fear the unknown. It's human nature. Once we understand something'even if we don't like it'we can begin to accept it. That is why I believe one of the most important duties of health care professionals is to communicate fully with their patients, to explain their condition and treatment options in ways they can understand.

I turned to the woman. "Don't worry," I said. "It's not you. It's me." Her eyes widened as she looked over at me. I wasn't sure she believed me so I got up and walked into the radiology room, interrupting the conferring doctors.

"Those are my images, aren't they?" I asked the radiologist in earshot of my spa-mate.  I suspect that most doctors would have politely but firmly asked me to return to the waiting area.

The radiologist's response was remarkable.  "Would you like to meet your enemy?" she asked.

Tightening the belt of my robe I said, 'Yes!'

Dr. Danon asked everyone else to leave and invited me in.' She began explaining the complicated topography of my images.'  I felt empowered and smiled through a stream of tears.'  Now I knew my enemy.'  I was the last patient to be seen that day.'  The kindness of the radiologist stayed with me that night.

The next morning I returned for a biopsy.'  The same radiologist explained every step of the process.'  She knew I was comforted by knowing.'  She even turned the sonogram screen toward me so together we could watch as she removed samples of each suspicious area.'  Mesmerized, I didn't even notice any pain from the procedure.

I watched as the radiologist filled tubes with pieces of my breast. She pointed out that the tissue showed extensive blood vessel formation, a hallmark of cancer.'  Dr. Danon generously shared information with me every step of the way but'more than that'she prepared me for the biopsy results.

Next came my first meeting with the oncologist.'  The biopsy confirmed what had been suspected.'  Knowing what to expect, even though it was devastating, braced me for what felt like my own head-on collision.'  Dr. Burdette-Radoux sat down with me and explained the treatment options for inflammatory breast cancer and took communication one step further. Unlike the physician I visited for a second opinion, my oncologist was eager to discuss my goals.

'We're going to send you for a bone scan to determine if the cancer has spread,' she explained in a soothing voice.'  Then she discussed the differences between the treatment options depending on the results.'  Her kind and careful explanation armed me for two different battle scenarios.' '  The scan showed a 'hot spot' and days later a small piece of bone was removed from my lower spine for biopsy.'  Each step of the way I knew my enemy, and thanks to Dr. Burdette-Radoux, I wasn't caught off guard later that week when the metastasis was confirmed.

At the Maimonides Cancer Center'where I chose to go for diagnosis and treatment'the quality of the communication was exquisite. I wish all adults diagnosed with a serious illness could have a similar experience. Unfortunately, I think my experience is the exception, rather than the rule.

Older adults, in particular, often struggle to get good information from their doctors. They may find the medical terminology off-putting.'  They may suffer from impediments like vision or hearing loss that the clinician fails to factor into his or her approach. And sadly, some providers withhold information from older adults out of some archaic and ageist notion that they can't handle the truth.

In reality, most people go to the doctor because they already know something is wrong.'  Like the woman who sat next to me awaiting her mammogram results, not knowing can be more terrifying than the diagnosis itself.'  No matter our age, we have a fundamental right to know the details of our own condition, if we so choose.'  I understand that not everyone might want to receive all the information up front, as I did.'  But ultimately, people need to be informed in order to take responsibility for their health.'  How, then, can we train physicians and other health professionals to become better communicators during serious illness?

Recently, the American Society of Clinical Oncology released recommendations to improve doctor-patient communications about 'the full range of palliative care and treatment options for patients diagnosed with advanced cancer (defined as incurable disease).''  Perhaps soon, patients and families experiencing serious illness will be able to meet their enemy just as I met mine.

Second in a series. See also: 'Can Good Care Produce Bad Health?'

More Blog Posts by Amy Berman

author bio

Amy Berman is a program officer for the John A. Hartford Foundation (@JHARTFOUND). She heads the Foundation's Integrating and Improving Services portfolio, focusing on the development and dissemination of innovative, cost-effective models of care that improve health outcomes for older adults. More of Amy's posts chronicling her health and care since she was diagnosed with Stage IV inflammatory breast cancer can be found on the Hartford's Health AGEnda blog. You can also follow her on Twitter at @NotesOnNursing.

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End-of-Life Planning   Plan for your End of Life Care   Cancer   Amy Berman  

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