We have learned a lot about how to treat cancer in the past 30 years, yet patients still experience significant pain, stress, and other symptoms 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 it is still only about a year — way too short.
However, palliative care, which addresses the emotional, physical, practical, and spiritual issues of serious illness, can help lung cancer patients (PDF) live better, longer lives, according to research published in the New England Journal of Medicine.
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 to fight for them and with them against this scourge? It is especially tough when surveys show 70% of people (PDF) (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 Health Care Foundation and I have partnered with HxRefactored, a conference that focuses on improving health experiences through technology and design, to sponsor the Decision Aid Upgrade Challenge. We’re asking designers in health care 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 treatment options and corresponding side effects, and learn about other sources of support, including palliative care and hospice. In addition to these education pieces, decision aids communicate objective information about success rates directly and honestly, helping 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. With stage IV lung cancer, that will happen at some point, whether we want to think about it or not.
Ripe for a Redesign
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 PDF documents they lack opportunities for patient engagement and don’t go far enough in fostering genuine shared decisionmaking involving patients, families, and oncologists.
I am partnering with the California Health Care Foundation and HxRefactored 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.
We hope that designers in the health care field will use their skills in user experience (UX), 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 road map of what is coming. More than 80% want to know what is going to happen to them, even if the news is bad, according to the Institute of Medicine. 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 families 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 in a simple-to-use iPad app? Or what if the patient were asked a series of personal values questions that could guide them to options that best fit their beliefs and wishes? Wouldn’t that be better than being handed a document that does little to help them 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 tell us we still have a long way to go:
When asked, most patients (69%) with metastatic lung cancer did not understand that chemotherapy was very unlikely to cure their cancer.
Only 27% of patients said that their oncologists had talked with them about how they want to die.
All of this can lead people to die in the intensive care unit or in the hospital when most say they would prefer to be at home, surrounded by family members.
We know that it is possible to have shared decisionmaking conversations and that people who have these conversations have more control over their lives. We know decision aids work, but they could work so much more effectively if they had better design. With your help, we can redesign the decision aid that my team created for patients facing first-, second-, and third-line chemotherapy for stage IV 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.
Dr. Thomas J. Smith is director of palliative medicine and professor of oncology at the Sidney Kimmel Comprehensive Cancer Center and the Johns Hopkins Hospital in Baltimore. Dr. Smith is a pioneer in integrating palliative care and cancer care and an expert in decision aids and shared decisionmaking.