Why cancer patients and clinicians need a Decision Aid Upgrade
Written by: Thomas Smith, MD - Professor of Oncology, John Hopkins Hospital
We have learned a lot about how to treat cancer in the past 30 years, yet patients still experience significant symptoms, pain, and stress from cancer and its treatments. And we are nowhere near curing patients of some of the most debilitating forms of this disease.
The outlook for lung cancer can be particularly poor because it is often diagnosed at a late stage, tends to occur in older people who often have other medical conditions, and remains one of the most difficult cancers to treat. The average survival has increased a few months with new treatment, but is still only to about a year – way too short.
However research has shown that palliative care – which addresses the emotional, physical, practical, and spiritual issues of serious illness – can help lung cancer patients live better, longer lives.
So, how do we incorporate palliative care into our conversations with patients and families who expect us to tell them about the latest treatment, downplay its side-effects and demonstrate the tenacity with which we will fight for them and with them against this scourge? It is especially tough when 70% of people (and some of their doctors) don’t know what palliative care is, or think of it just as “end of life care” or hospice.
To explore new ways of approaching this problem, the California HealthCare Foundation and I have partnered with HxRefactored to sponsor the Decision Aid Upgrade Challenge. We’re asking designers in healthcare to use their skills to reimagine the tools used to support the conversation between providers and patients about treatment options.
Decision Aids Have Potential
Decision aids provide a framework to help patients understand their prognosis and disease trajectory, evaluate available treatment options and corresponding side effects, and learn about other sources of support, including palliative care and hospice. In addition to these “education” pieces, by communicating objective information about success rates – in a direct and honest manner - decision aids also help patients consider how they want to live, and what they want their focus of care to be.
When it comes to treating advanced lung cancer, most decision aids I have seen fail to demonstrate the limitations of multiple rounds of chemotherapy, and overlook the benefits of palliative care and other supportive services. They also don’t help people transition from thinking “this treatment could work!” to addressing “the disease is growing again, what do I do now?” Decision aids could help people with the big picture of their illness, including advance care planning, making their wishes known about life support, and developing their legacy.
For this reason, I have spent the last 10 years developing my own decision aids to help people understand the best curative and life-extending treatments, balance side effects, encourage advance care planning while they are still well, and help with the transition to hospice. Which, with stage IV lung cancer, will happen at some point, whether we want to think about it or not.
Ripe for a Re-Design
While I am immensely proud of what my team and I have developed, we need to do even better. Our decision aids provide a wealth of information, but as static PDFs they lack opportunities for patient engagement and don’t go far enough in creating a true experience that fosters shared-decision making between patients, families, and oncologists.
We hope that designers in the healthcare field will use their skills in user experience, human-centered design, information architecture and rapid prototyping to help us develop decision aids that truly put patients and their families at the center of care.
Patients want a roadmap of what is coming. Over 80% want to know what is going to happen to them, even if the news is bad. We should emphasize that potential benefits of treatments may outweigh risks early in the disease course, but, depending on response and symptom management, risks may later outweigh benefits. Patients need to know how likely it is that their cancer will respond, shrink, stay the same or grow—and what the rare and common side effects may be. They also need to be given some resources to help them discuss with their family and doctors their wishes about treatment, hospice, their own goals, and what is important to them. With all this information, patients can truly consider their preferences for care and make treatment choices that align with their personal values and goals.
Imagine if a patient could follow along with a graphic decision tree on a simple-to-use iPad app? Or what if they were asked a series of personal values questions that might guide them to options that best fit their beliefs and wishes? Wouldn’t that be better than being handed a document to read which does little to help you navigate concerns about quantity and quality of life?
We have learned a lot about communication in the past 30 years. We have gone from “Don’t use the word ‘cancer’” to letting people know their best options. However, the data tells us we still have a long way to go:
- When asked, most (69%) of patients with metastatic lung cancer did not understand that chemotherapy was very unlikely to cure their cancer
- Only half of lung cancer patients have had any of their doctors mention hospice 2 months before death.
- In one cohort study, oncologists talked with people about how they want to die only 27% of the time.
- All of this can lead people to die in the ICU or in the hospital when most say would prefer to be at home, surrounded by their family.
We know it is possible to have shared decision-making conversations—and that people who have those conversations have more control over their lives, and how they lead them. We know decision aides work, but with better design they could work so much more effectively. With your help, we can re-design the decision aid that my team and I created for first, second, and third line chemotherapy for patients with stage four non-small cell lung cancer.
I am looking forward to seeing the thoughtful, empathetic and important new perspectives that the CHCF Decision Aid Upgrade Challenge will uncover.
About The CHCF Decision Aid Upgrade Challenge
The California HealthCare Foundation is a nonprofit grantmaking philanthropy that acts as a catalyst to fulfill the promise of better health care for all Californians. CHCF has partnered with HxRefactored and Thomas J. Smith, MD, Professor of Oncology at Johns Hopkins Hospital to seek out new kinds of decision aids that can engage late-stage lung cancer patients in their treatment decisions—and offer clear, easy-to-understand ways to consider their options. Complete rules and guidelines can be found here.