The last century of medicine has seen stunning advances in technology, clinical techniques, and the structuring of healthcare institutions. Within the last two decades alone, medicine has begun down a road of increasing sophistication by considering how therapies and treatments can be tailored to particular genetic markers, spurring on astonishing medical innovation. However, these advances and innovations come with a trade-off: these advances in medicine increase the number of difficult decisions that patients face. not so long ago, patients with cancer faced only one difficult decision—whether or not to undergo surgery to treat a solid tumor. Now, due to innovation, patients face a dizzying array of decisions. Patients with cancer can now decide whether to undergo surgery, chemotherapy, or radiation treatments. In some cases, patients might decide to undergo all three of these options or none of them. Such decisions, however, are not made easily. Often, navigating through these decisions requires careful consideration of clinical expertise, patient values, and available treatment options. Resources that help guide patients through difficult decisions become invaluable, as they help provide a factual basis from which patients can make informed decisions regarding their medical care.
I, myself, have personal experience with difficult medical decisions. At 23 years old, I was diagnosed with Hodgkin’s Lymphoma. While this cancer has a remarkably high survival rate, it required that I make a difficult treatment decision. After four rounds of chemotherapy, I was given the option of either undergoing radiation therapy or two additional rounds of chemo. Both options had their own sets of risks. Additional rounds of chemo would further expose me to the toxicity exhibited by these drugs whereas radiation would mean exposing my body to potentially cancer-inducing rays. I ultimately decided to undergo radiation, as I no longer wanted to undergo the side effects associated with chemo.
Recently, I reflected on my experience with making this decision in a Narrative Matters essay for the journal Health Affairs entitled Helping Cancer Patients Through Difficult Decisions. In this essay, I highlight the need for patients to be provided with resources when they are faced with life-altering treatment decisions like my own. Apart from the clinical expertise and opinions provided to me by my oncologists, I made my decision from a relatively uninformed point of view. As a result, I question whether the treatment decision I made was the best decision for me. In an attempt to remedy this decisional uncertainty for future patients, I highlight the need for high-quality patient decision aids to be developed and implemented in clinical care.
Patient decision aids provide patients with factual, evidence-based information regarding various treatment options and their outcomes. Additionally, these aids help patients recognize or clarify their personal values to assess which options are aligned with them. Often, these aids can assist patients and physicians engage in shared decision-making by providing patients with a resource that they can refer to when discussing treatment options with their physicians.
In the essay, I argue that the distribution of decision aids should become a standard-of-care practice in certain clinical situations. I reason that, before making decisions that could have an outsized impact on one’s future health, patients should be able to carefully consider the assorted options that are available to them. Properly designed and implemented decision aids provide patients with these options in a manner that is both factually informative and clarificatory of personal values.