Making decisions is an essential part of any healthcare experience. No matter how long or complicated it is, every illness journey is guaranteed to be rife with decisions that need to be made to progress things forward along the treatment and recovery pathway.
It used to be the established norm in healthcare for the medical expert (typically a physician either in a primary care or specialty setting) to make nearly all decisions with little input from the patient, but this is no longer the case. Patients are more empowered now than at any time in the past to make their voices heard and exercise their decision-making power as they see fit.
The fact is that the illness journey is an active learning process. There are forks in the road, there are many moving parts, multiple stakeholders involved, and often heavy emotions experienced along the way.
This begs the question: how can we better understand and embrace the patient care journey to ensure that patients remain empowered in the independent management of their health while also ensuring that they are making the right choices with regard to their overall well-being? Read on!
Patients Make Better Decisions When They Are Informed, Empowered & Supported
More informed patient populations, greater access to knowledge, enhanced information technology, and broader commitments from healthcare systems and providers to patient-centered care are all contributing to this new and improved reality. We’ve seen patients slowly taking on more responsibility for their own care, a gradual trend that has been gaining momentum for many years. This has all led to a more competent, confident, and autonomous patient population overall.
We can also reason that the more experience a patient gains from being in a care system that has devoted itself to patient-centricity, the more confidence they will have to take on a larger role in the medical decision-making process.
Most patients and providers agree that a more collaborative care model is a good idea to support patients in thinking through their options and making a final decision. The process of shared decision making involves inviting patients to participate, engaging them in their care, and presenting options and information as part of a discussion. That being said, educating patients about risks and eliciting their preferences is time consuming and complex.
Is it even realistic to think a provider can perform all of their clinical duties and then also engage the patient in the process of shared decision-making? How do you design the patient’s experience to maximize an efficient, interactive, and meaningful discussion? What should that conversation look and feel like? How do you most effectively transition from a discussion about the problem/diagnosis/disease to a conversation about the solution/treatment/intervention? These are just a few of the questions that come to mind when contemplating practical and useful solutions to these challenges.
Anxiety and Pressure Leads to Compromised Decision Making
Another challenge we are facing at this particular moment in time is heightened anxiety and uncertainty. The realities and implications of an ongoing pandemic (and subsequent “endemic”) are partly to blame, but high levels of stress and anxiety have been entrenched in our society for many years. Our society’s sheer pace and the expectations put upon all of us to do more with less time have been a primary challenge identified by healthcare consumers and providers for decades now.
More and more people are time harassed, time squeezed, overworked, and overburdened, especially patients living with chronic conditions. As a result, many people are under pressure to make more and more decisions in shorter and shorter intervals.
If we are pushed to make decisions very quickly about very complex issues, then we are more likely to make mistakes, and in the case of our healthcare, these decisions can have drastic consequences on our well-being.
The Right (and Wrong) Tools to Inform Decision Support Programming
The hope for many is that digital solutions could help address information gaps and other so-called blindspots that exist in the by providing the data we need to help us make more informed decisions. But we don’t yet have a good grasp on how digital technology impacts our ability to navigate the illness journey, disease burden, or decision-making.
Technology provides us with more data, but that data doesn’t fully account for patient values, attitudes, fears, beliefs, or intuition. Neither does technology provide us with the skills necessary (listening, communication, problem-solving, etc.) to be effective decision-makers. This is where healthcare providers, armed with tactics and tools and a willingness to help, can learn to be effective collaborators in the decision-making process.
What Patients Need
Physicians and medical experts need to help their patients navigate disease and decision-making with confidence. What is often missing are practical tools that can help facilitate dialogue and learning through the mutual exchange of relevant and meaningful information. But what is relevant and meaningful to the patient is dependent on the specific needs, attitudes, values, and beliefs of that particular individual.
What Physicians Need
Physicians who are on the other end of the healthcare transaction also have needs. What is most relevant to them might depend on their particular therapeutic area of focus, philosophy of care, patient population, preferred communication style, or other practical limitations.
The most effective tools to aid in shared decision-making will be simple to use and adaptable to a wide variety of users, circumstances, and environments. Ultimately, the tool(s) should be designed to facilitate an informed decision. Any tool used for this purpose should be designed as a decision aid that assists patients (and their caregivers) in evaluating their options based on their individual goals and concerns. Hardwired into these tool(s) should be the capability to elicit and collect input from patients to more effectively learn about their needs, preferences, and perspectives.
Furthermore, they should be designed to liberate the patient to make sound decisions without undue stress. The tool(s) and related activities/processes should not feel gimmicky or coercive in any way. Ideally, patients should have the time, resources, and support they need to decide and then follow through on that decision once it is made. Whenever possible or applicable, the message from providers should emphasize that there is not a set time limit to make a decision. Many patients will be overwhelmed even by the smallest of decisions. We should balance the interest of offering the opportunity to move forward with an understanding that there is the possibility that they will require more time to decide before proceeding with the intervention that is being recommended.
Effective Decision Support Comes Down to Human Connection
Ultimately, we need to engage with patients through the lens of empathy and meet them where they are.
We need to understand what patients are thinking and how they are feeling. We need to do more than feed them information or provide them with a list of options. We need to elicit meaningful information about their personal needs, fears, and preferences to better assess where they are right now in this moment. Only then can we effectively meet them where they are and provide the support they need to make more informed decisions.