How Patients Can Get the Whole Truth About Their Treatment

How Patients Can Get the Whole Truth about Their Treatment

By Kim Callinan—

Allyne Hammer of Santa Cruz, California, has lived with a brain tumor and incurable cancer for seven years.

“When I was first diagnosed, my doctors just kept doing what was protocol for my disease,” she says. “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. 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.”

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A new survey by the Kaiser Family Foundation provides evidence that Allyne’s experience of finding it challenging to ensure her treatment plan was consistent with her values and priorities is all too commonplace. In fact, nearly half of all Americans believe most people have too little control over their own medical care at the end of life, according to the report.

Most people facing a grave illness would choose improved quality over quantity of days if extending life meant treatments jeopardized their quality of life, according to a national poll by National Journal and The Regence Foundation. Unfortunately, 1 in 3 people near the end of life receive nonbeneficial treatments (a treatment given with little or no hope of it having any effect), according to the International Journal for Quality in Health Care. And all too often these nonbeneficial treatment options rob people of precious quality of life during their final years.

Only one in three cancer patients said 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, costs of treatment, the help they might need at home, and clinical trial opportunities, according to the 2016 CancerCare Patient Access and Engagement Report. About half of those surveyed wondered if they were getting the best care. 

American healthcare has a systemic problem. Seriously ill people are on a conveyor belt of medical treatments that carry devastating side effects without verifying it is what the patient wants. In response to this healthcare crisis, Compassion & Choices has created the Truth in Treatment™ initiative with online tools that give people the information and validation they need to make healthcare choices aligned with their own priorities.

One of these tools is The Diagnosis Decoder™. It 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.

Patients can make informed treatment choices only if they have the whole truth about options, including the pros and cons of each. People like Allyne Hammer 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.

 

Kim Callinan is chief program officer for Compassion & Choices and holds a Master’s degree in public policy from Georgetown University.

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How Patients Can Get the Whole Truth About Their Treatment
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