Politicians and policymakers are discussing what parts of the Affordable Care Act to change and what to keep. While most of us have little control over those discussions, there is one health care topic that we can control: what we talk about with our doctor.
In 2001, the Institute of Medicine (IOM) released the landmark publication “Crossing the Quality Chasm.” The report proposed six aims for improvement in the U.S. health system, identifying that health care should be patient-centered, safe, effective, timely, efficient, and equitable.
The idea that health care should be patient-centered sounds obvious, but what does that mean? The IOM defines it as care that is “respectful of and responsive to individual patient preferences, needs, and values” and that ensures “patient values guide all clinical decisions.”
For this to truly happen, doctors’ appointments need to cover more topics than how you are feeling and what can be done. Does your doctor know your values?
If you answered no, you’re not alone. Less than half of people report that their physician or other health care provider asks about their goals and concerns for their health and health care.
Your doctor can discuss medical tests and treatments without knowing your life goals, but sharing your values and needs with your doctor makes discussions and decisions more personalized—and may lead to better outcomes.
How Does Patient-Centered Care Happen?
In order for your health care to center around you, your doctor needs to know your values, preferences, and needs. Everyone is different. Your values and needs may also vary from one appointment to the next.
As a neurologist, when I’m working with a 76-year-old widow whose main goal is to remain independent in her home, we frame her care in that context. We weigh the benefits of medications versus the complexity of adding one more drug to her crowded pill box. We discuss how a walker helps her be more independent rather than less, as it helps her to move around her home more safely.
When a stressed college student comes to my office for a bothersome tremor, his preference might be to avoid medications that he could forget to take or that could harm his school performance. This guides our discussion of the pros and cons of different options, including using medications but also doing nothing, an option that almost half of patients feel strongly should always be discussed. A year from now, after he graduates, we’ll revisit the conversation, as his goals and needs may be different.
In sharing their values and goals with me, these individuals enabled a health care approach that respected their needs and also responded to their life circumstances.
Values and Shared Decision-Making
Incorporating your values alongside what we know from medical research is the basis of shared decision-making, described as the pinnacle of patient-centered care. Shared decision-making is a partnership between you and your physician. If you also involve someone else, such as a spouse, in decision-making, they can be engaged in the process, too.
Shared decision-making is not relevant only when deciding whether to start a treatment, but also when deciding whether to undergo a screening (for example, a mammogram) or get testing to tease out a diagnosis. The key element of shared decision-making is incorporating your values and preferences alongside the best available evidence.
To do this, your physician should explain the medical information associated with each of the different options—the costs, the research, the anticipated benefits and how likely they are, the risks and frequency of complications or side effects, etc.
Your physician should also discuss your values and preferences as they relate to these options. For example, when partnering with a person who suffers from chronic headaches and a high-stress job, I’ll help him or her reflect on the potential benefits of fewer headaches on work productivity, as well as the potential impact of the side effect of morning grogginess.
With so many options and so much uncertainty in medicine, individualized care is critical. That happens most effectively if you and your doctor are on the same page about your goals and needs.
Tools for Navigating Shared Decision-Making
These models frame the steps of medical discussions slightly differently, but both emphasize that patients and health care professionals need to be engaged—it’s a partnership. Alternatives are compared and values discussed before a decision is made. Reassessment is also an important part of shared decision-making because alternatives and values can change over time.
For common decisions, different health care organizations have created decision aids to help physicians and patients talk through the values, the scientific evidence, and the pros and cons that are likely to impact specific decisions.
The Agency for Healthcare Research and Quality has decision aids on topics including lung cancer screening, nonsurgical treatment options for women with incontinence, and treatments for men with localized prostate cancer.
The Mayo Clinic Shared Decision Making National Resource Center has decision aids for common topics such as choosing the right medicine for depression and deciding whether you should treat osteoporosis (and if so, what treatment makes the most sense).
Decision aids are not designed for patients to make decisions on their own. They are created to enhance your partnership with your doctor, and provide a structured way for you to talk through a decision by reviewing the evidence and your preferences.
What You Can Do
While busy lives can hinder introspection, it is helpful for you to know your own goals and needs. Are you focused on working two more years before retiring? Do you want to explore physical therapy or dietary changes before considering medications? Are you walking your daughter down the wedding aisle in two months and want something to hide the tremor that never really bothered you before?
If you know your values and your goals for the coming months or years, it’s easier to share them with your doctor.
Shared decision-making also requires you to be an active participant. Listen to the options and the pros and cons. Ask questions. Think through how each option relates to your personal values and preferences. Take time if you need it. And then with your doctor, decide what’s best for you.