At Diagnosis, What Do Cancer Patients Want?
A Q&A with Laura Benson, RN, MS, ANP, president of Conversations in Care, LLC; LauraBensonRN@Gmail.com
Q: In our digital communication world of 2019, some patients may receive the initial message that YOU HAVE CANCER by cell phone, text, email, or even voice mail. When this happens, what do patients most want, and how can that best be accomplished?
A: When I first read your question, I was immediately brought back to a National Cancer Survivors Day around 1988. During the open microphone portion of the program, a patient bravely rose to address the audience. She proceeded to tell us she didn’t know she had cancer until she received the Survivors Day invitation, whereupon she turned to her attending physician and asked, “Well doctor, do I have cancer?” Since then, communication in today’s digital age has not seen a vast improvement. Indeed, a recent report out of California tells the tale of a patient and family learning he was dying via a video robot interaction.
What has not changed over the decades is the need for information that is easily understood, easily accessible, scientifically accurate, and delivered with compassion and connection. The dawn of the “Dr.Google” age has brought new and unique challenges.
There is no lack of information available. Patients and families still want to know cure rates, prognosis, treatment options, whether they will experience pain, where to find specialists, the costs involved, and what clinical trials are available.
Today’s challenge is guiding patients and families to use reliable information sources, and to avoid recommendations made for “cures” based on questionable science. The need for information remains present from the first day of diagnosis until the last day of the patient’s cancer journey. The focus of the information might change over time, but the need is there. For example, if an initial treatment fails to bring about a successful outcome, information needs shift to second opinions and clinical trials.
When searching for information, patients should first look to the source. Where is the information coming from? I recommend looking at websites that not only have vetting and validation behind them, but also are written at a level that is understandable, complete with a glossary and lots of illustrations, such as the National Cancer Institute’s website. Websites of patient advocacy groups are another good source of information. Many of these groups have full-time scientific personnel and top-notch medical boards providing input and comment to the available information. There are many well-known cancer advocacy groups, such as the American Cancer Society, that provide information on a wide variety of cancer types and treatment options. Other organizations focus on the psychosocial needs of patients and families, like CancerCare, which offers counselling, financial assistance, and support groups. Many disease-specific groups exist, as well.
One area of specific need is understanding and navigating the world of clinical trials. ClinicalTrials.gov offers a comprehensive searchable database, but patients need assistance in understanding the medical jargon associated with inclusion and exclusion criteria. Advocacy groups like Cancer Commons bridge the gap for patients, taking into consideration the nuances of an individual patient’s “case” and connecting them with the latest science and experts in relevant fields. This enables patients to learn which science-based treatment options might be best for them. These kinds of groups help assist the patient to their personalized and best next step.
We are moving from the age of personalized medicine to that of precision medicine, and oncology care is leading the way. It is imperative that we guide the patient along with us as the reason for the journey.
As author Chris Pirschel wrote earlier this month for ONS Voice, “Every cancer diagnosis is as individualized and unique as the person receiving it. From family history to societal and economic background to a patient’s genetic make-up and composition, cancer affects each person with cancer differently.”
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