Kenneth L Abbott, MD, FACP  |  11/10/2021

Ship Ahoy!

Engaging the health care system often feels like travel to an exotic foreign country. The setting is unfamiliar, different from home comforts. Most of the people encountered are strangers. The smells and sounds are strange, too. There are unique sources of annoyance and discomfort. Most noticeably, everyone speaks a language that might be English but is peppered with words, phrases, and names with syllables piled upon syllables that tangle the tongue, cross the eyes, and confound the memory. This language barrier can impede a satisfactory healthcare experience. A person may feel entirely at sea. How do you navigate these strange waters?

Much as sailors depend upon charts, maps, and navigation tools in order to cross the ocean safely, medical professionals have developed a large vocabulary of technical terms that communicate complex concepts quickly and efficiently—so long as you are clued in. A compass or astrolabe benefits no one who cannot comprehend its use. In medicine, one word or phrase can say something—to the person who understands—that otherwise might require several words, even entire sentences. For the initiated, the language of “medicalese” is a proven asset. For those unfamiliar with medical terminology, confusion and frustration can build rapidly. The person who needs health care also needs understanding to achieve optimal results. Lack of understanding, on the other hand, may impair good care and sometimes defeat even the best of efforts.

The first step in overcoming the language barrier is also often the hardest: listen well. But this can pose a challenge. Once the care provider utters the word “cancer,” everything else said fails to register as we struggle to cope with the awful news. Even with the earliest recognition and the best potential outcome of treatment, people usually require time to come to grips with this new reality, with all the impact upon our lives that a cancer diagnosis imparts. Whenever possible, having a companion with you who can listen and ask questions, take notes, provide additional information, and take a reassuring supportive hand improves the quality of the encounter. Subsequent visits will become easier. Make sure you understand what the provider says and seek clarification whenever necessary. Do not be afraid to ask the provider to explain something again or explain it in another clearer or even simpler way.

The next step is to ask questions. People may feel uncomfortable initially, not wanting to appear ignorant or to bother (as they think) their care providers. Try to get past this, or come to your encounters with someone who freely asks questions. Put the things you want most to know up front. Be willing to make a follow-up appointment or sit down with another care provider, such as a nurse or physician’s assistant, who may have more time to spend with you to make sure you have all the answers you need.

The third step is education. Read all the information your health care provider gives you. Mark up the parts that are unclear or provoke more questions. The internet can be useful if approached with wisdom and care. I recommend sticking to reliable sites created by sources with a reputation for excellence in cancer care. You’re already visiting one such site! Other good online hosts are the American Cancer Society and the various national cancer centers. The characteristics of social media sites make them unreliable for such an important task.

Few persons confronting a cancer diagnosis acquire specialized expertise about their disease. But acquiring a basic understanding of it and the plan for treatment equips and strengthens you for the journey ahead. Like a sailor who knows the seas and his way about them, the knowledgeable person with cancer can sail with greater confidence the waters that lie ahead.
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