(Washington, DC – April 6, 2017) – According to research, most people facing a grave illness would choose improved quality over quantity of days if extending life meant treatments jeopardized their quality of life. But an abundance of research among people facing cancer, for example, shows a disconnect between them and their doctors when it comes to these decisions. For example, 70% of cancer patients in a 2016 study had different views about their prognosis from their doctors, and 96% were more optimistic than their doctors about how long they would live. Yet a person’s understanding of their prognosis is central to the treatment plan they choose; unfortunately, patients consistently overestimate benefits and underestimate harms of medical tests and procedures.
“American healthcare has a systemic problem,” said Barbara Coombs Lee, president of Compassion & Choices, the advocacy group that created the Diagnosis Decoder™ for its Truth in Treatment™ initiative. “Seriously ill people are on a conveyer belt. Doctors prescribe medical treatments with devastating side effects without verifying this is what the patient wants. Truth in Treatment™ gives people the information and validation they need to make healthcare choices aligned with their own priorities.”
The Diagnosis Decoder™ helps people ask better questions so they can receive clearer information and make fully informed treatment decisions. The companion Cancer Decoder™ has additional questions specific to that disease. At DiagnosisDecoder.org, patients answer a few questions about their next medical appointment and then create a customizable list of productive, medically informed questions to bring to the appointment. The tool is research-based and received a positive response from people facing a serious illness who tested it. These questions give doctors permission to talk about the benefits and burdens of different tests and treatments, and to outline all options for the patient.
“When you only have a 15 minute appointment to talk with your doctor about a disease that may very well take your life, it is not easy to steer the conversation,” said Allyne Hammer of Santa Cruz, California, who has lived with a brain tumor and an incurable cancer for seven years. “When I was first diagnosed, my doctors just kept doing what was protocol for my disease. But every treatment and test came with debilitating side effects for me. I spent years looking for a doctor who would work with me to treat me the person, not just my disease. But I still have to fight against the constant insistence on more tests and more treatments at every visit.”
A 2016 study among cancer patients shows that only one in three say they get enough information about their treatment options, and less than half felt adequately informed about whether or not they would be able to work, about costs of treatment, the help they might need at home and clinical trial opportunities. About half wondered if they were getting the best care.
“Patients can make informed treatment choices only if they have the whole truth about options, including the pros and cons of each,” said Coombs Lee. “People like Allyne are the exception. She did get to direct her own care, but not before suffering through three years of rashes, swelling, fatigue and ongoing lymphedema, neuropathy and Bell’s palsy – all side effects of a medical system on autopilot.”
The Diagnosis Decoder™ and companion Cancer Decoder™ are the latest tools from Truth in Treatment™, a consumer initiative founded by Compassion & Choices to empower and educate people with advanced illness to make fully informed healthcare choices and live their remaining time on their own terms. More at www.TruthInTreatment.org.