Patient-centered care is about providing care that aligns with the patient’s values
Patient-centered care is about providing care that aligns with the patient’s values: i.e., it’s care the patient actually wants and will benefit from. Despite the popularity of this concept, studies show that there’s a long way to go before it’s ubiquitous.
One study on cancer patients found that “The cancer’s responsiveness to chemotherapy does not seem to influence whether dying patients receive chemotherapy at the end of life”, which is another way of saying that oncologists use chemotherapy even when there’s no evidence that it works and despite its known downsides. Further, while some patients are up for “doing everything”, studies find that there’s often a difference between the care end-of-life care patients receive and what they actually want.
There are two phases of this problem. The first is that physicians often fail to ask patients about their values. The second is that, even when patient values are documented, the care they receive isn’t what they want. One study compared the advance care planning (ACP) documents of deceased patients with the care they received. Despite families and physicians believing that the care was aligned 94 and 98 percent of the time (respectively), in reality, care followed the ACP documents only 65 percent of the time.
While there are still providers who need to be convinced of the merits of patient-centered care, the bigger task is operationalizing it. The biggest issues are understanding what such care looks like and figuring out how to bring it about. Here’s the framework we use at Compass Ethics to implement patient-centered care in hospitals.
Elucidate values. While most patients have general preferences, they often haven’t thought about their preferences for the specific health situation they’re facing. And even if they have, they probably haven’t told anyone about them. This makes it important to have conversations with the patient about their present situation and their priorities. The goal is to figure out the most important values to them and the weight of those values. Some patients really do care about living as long as possible no matter what, but most people have points where the priorities change: e.g., “I want to be able to meaningfully interact with my family until the pain becomes too much.”
There are many excellent resources on having conversations about values. The Serious Illness Conversation Guide from Ariadne Labs, which Compass Ethics recommends to providers, is one option, but there are others. It’s almost always best to have a conversation instead of having the patient write down their preferences. A conversation will have more depth and nuance and is more likely to get at the specifics of the situation. In writing, people will often put phrases such as “keep me comfortable” or “don’t hook me up to machines”, but such statements usually have qualifications. In a conversation, the provider can give information necessary for informed decision-making: e.g., a patient who wants to be full code until the end might not understand what that entails. If a patient already has ACP documents, it’s valuable to go through them to add nuance and correct misunderstandings.
In a perfect world, providers would regularly have values discussions with patients. However, these conversations take time and can be difficult, so they often don’t occur. Therefore, hospitals should look for ways to make them more common, such as education sessions and quality improvement initiatives. A 2020 study of oncologists used machine learning to identify patients with higher mortality risk and then nudged the oncologists to have values conversations. It found that conversations increased from four to 15 percent in patients with high mortality risk following the intervention.
Make a plan. Perhaps the biggest misunderstanding of patient-centered care is a belief that providers should give the diagnosis and prognosis, describe the treatment options, then let the patient decide. The first problem with this approach is that patients are unlikely to understand all of the pros and cons of each option, and so are less likely to choose the option that best aligns with their values. The second problem is that this approach reduces the provider to a mere technician whose only job is to prescribe the medicine or perform the surgery, instead of being a partner in the patient’s care.
The better approach is to share the prognosis, ensure the patient understands the situation, then discuss values and preferences. The patient might immediately jump to asking about treatment options, to which the provider can respond with “I’m happy to discuss those, but first I want to make sure that I’ve answered your questions about where you are with your illness.”
Following the values discussion, it’s then appropriate for the provider to make a recommendation, which is done by connecting the prognosis and patient values: e.g., “Given what you’ve told me about how much you value x, I recommend that we do y.” The provider can discuss other options if the patient wants, but it isn’t necessary.
Communicate the values and the plan. The next step is to document the conversation, describing both the plan and the values that it’s based on, and to encourage the patient to tell loved ones (if appropriate). Documenting values is important for many reasons. One is that the clinical picture might change, so it’s useful to have a record of the conversation: “When we spoke last week we decided on x, based on how important y is to you. The current situation is now z, so I recommend that we revise the plan.”
Another reason to document values is that the patient might lose decision-making capacity. A record of conversations is helpful when working with a substitute decision-maker.
Follow through (and reassess). The previous steps are only worthwhile if the plan is actually followed. Anecdotally, providers who follow this process are more likely to provide the agreed-upon care. The provider has heard the patient express their values and the provider was the one to make the treatment recommendation, so there’s more buy-in. Of course, factors can change that will justify changing the plan, but the provider must ensure that treatment is changing for the right reasons. Providers often feel internal or external pressure to keep offering treatment options even though the likelihood of success is small. In such cases, they can return to the values conversations to determine if changing course is appropriate, and, when they aren’t sure, they should consult a clinical ethicist.