Whether you are recently diagnosed or dealing with a long-term condition, you should be involved in the decision-making process. The same is true if you and your doctor are discussing preventive screenings and/or diagnostic testing. Historically, a doctor would tell you your diagnosis and course of treatment, and you would do your best to follow the doctor’s orders. Fortunately, times have changed, and most doctors now work with patients to make treatment decisions together, called “shared decision-making”.
What exactly is shared decision-making in healthcare?
Importantly, shared decision-making is a “collaborative process that allows patients and their providers to make healthcare decisions together. It considers the best clinical evidence available, as well as the patient’s values and preferences.”
With shared decision-making, the medical team makes sure the patient understands the risks, benefits and possible consequences of different options.
Certainly, this model makes sense – the doctor is an expert in clinical experience, but the patient is the expert of their own wants, needs, concerns, and lifestyle.
What are the benefits of shared decision-making in healthcare?
Importantly, shared decision-making leads to better outcomes and lower costs.
Interestingly, many studies show that actively engaging in shared decision-making can improve patient knowledge and reduce their anxiety. Furthermore, shared decision-making is associated with improve healthcare outcomes and may reduce healthcare spending by reducing unwarranted care.
Additionally, researchers found that patients who actively engage with their providers in decision-making are better informed and understand their healthcare options better.
For instance, these patients tend to make better decisions about their own care, choosing options they are more likely to adhere to. This combination of informed choices along with increased treatment compliance improves quality of care and lowers costs.
Additionally, researchers found that among patients complaining of chest pain, shared decision-making “increased patient knowledge about their risk, increased engagement, and safely decreased the rate of admission to an observation unit for cardiac testing”.
And another study suggested that shared decision-making can decrease patient anxiety about healthcare costs. How? Being involved helps patients choose treatments that best fit their personal budgets and their healthcare priorities.
Who can benefit from shared decision-making?
Everyone benefits. Shared decision-making is appropriate for any health decision where there is more than one medically reasonable option. And shared decision-making benefits all patients, regardless of age or education.
When doctors provide information about the risks and benefits of screenings, tests, and/or treatment options, patients and families can make informed decisions. Clearly, shared decision-making is easier in an office environment since doctors generally know their patients and usually have time to discuss options.
However, what about shared decision-making in a hectic emergency room? Interestingly, a study in an emergency department found that although ERs are often chaotic and medical staff are frequently interrupted, shared decision-making in the ER can reduce unnecessary hospital admissions, something we could all benefit from.
It’s not only about treatment-based decisions.
Yes, shared decision-making is critical when you are making a treatment decision. But, it’s also important when you are discussing other medical decisions with your doctor, such as tests and preventive screenings. For instance, you and your doctor should discuss the pros and cons before you accept or decline any test or screening. Together, you and your doctor can determine your best course of action.
A doctor’s personality and style impact his/her approach to shared decision-making.
Certainly, doctors can, and should, foster shared decision-making. And doctors should realize they may be intimidating and should therefore make every effort to put patients at ease.
Additionally, doctors should actively engage all patients, even those who show reluctance, to participate in shared decision-making.
Not all doctors excel at shared decision-making.
Unfortunately, many doctors don’t actively engage patients in the shared decision-making process. For instance, in a large survey cancer patients, only 53% of respondents reported feeling sufficiently involved in making decisions about their care.
And doctors and patients do not always share the same goals. For instance, perhaps you want to experience minimal side effects, even if it means a shortened lifespan, while your doctor wants to extend your life by any means. Or vice-versa. Interestingly, in a study of patients with neuroendocrine tumors, only 51% thought they had the same treatment goals as their doctor.
What should you expect from your doctor?
Your doctor should make sure you understand everything discussed, whether you’re talking about preventive screenings, dialysis, or options for cancer treatments.
If you are making treatment decisions, your doctor should start any conversation with a clear description of your medical condition, including the potential impact on daily life and long-term outcomes.
Next your doctor should explain the pros and cons of each treatment option. The discussion should include possible side effects, expected recovery time, the impact on your quality of life, and the long-term prognosis.
Do you understand the issues at hand?
Firstly, your doctor should make every effort to make sure you (and your family) understand your diagnosis and treatment options, by using plain language and visual aids.
Importantly, your doctor should ask you to summarize what you heard, so he/she can make sure you understand correctly. If your doctor doesn’t take this step, initiate it on your own. Don’t be afraid to say you want to repeat the information to make sure you understand it.
Why is this so important? Unfortunately, understanding medical information is often harder than it seems. And many doctors assume their patients understand health information better than they actually do. In fact, in one study, 77% of the doctors though their patients “understood their diagnosis at least somewhat well”. Yet only 57% of their patients properly understood their diagnosis.
Lastly, if you need a language interpreter, don’t hesitate to ask for one.
It goes without saying that you cannot fully participate in a shared decision-making process if you don’t properly understand your diagnosis and treatment options!
Does your doctor include you in shared decision-making?
Hopefully, you have a doctor who discusses testing, screening, diagnoses, and treatment options with you, allowing you to work together to create a plan. However, if you find your doctor isn’t listening to your concerns or opinions, it’s likely time for a new doctor.
You need, and deserve, a doctor who will respect your input and work with you collaboratively.
For tips on how to find a new doctor, read my blog post: How Do You Find a New Doctor You Can Trust?
Don’t let your discomfort stand in your way of shared decision-making.
Unfortunately, not all patients want to participate in shared decision-making. One study found that 25% of patients prefer a passive role in the process.
Why don’t more patients participate in decision-making? Researchers conducted focus-group sessions to learn how people feel about participating in decision-making and if they follow their desires to participate. The study found that people had a “strong desire” to participate in decision-making, yet many obstacles prevent most patients from doing so.
What are the barriers to participation?
The study concluded there are a few reasons people are afraid to speak up during a doctor’s visit:
- People, even those who are well-educated and relatively affluent, feel they must defer to their doctors during clinical appointments and conversations.
- Doctors can be authoritarian – which can be intimidating.
- Patients fear that doctors will label them as “difficult”.
Try your hardest not to let fear or discomfort stop you from participating in shared decision-making. This could be one of the most important decisions you ever make. Engage in the process – it’s your body and your life.
Some patients feel conflicted about their treatment decisions.
When patients do not fully understand the pros and cons of each available option, they can feel conflicted about the decisions they make.
Research conducted in 2020, during the COVID-19 pandemic, evaluated how patients felt about their decisions to have surgery. Prior to their surgeries, the patients answered these yes/no questions:
- Do you feel sure about the best choice for you?
- Do you know the benefits and risks of each option?
- Are you clear about which benefits and risks matter most to you?
- Do you have enough support and advice to make a choice?
The results found:
- Almost 20% of the patients were conflicted about their decision, answering “yes” to only 0-2 questions.
- 17% did not know the benefits and risk of each of their options.
- 6% were unclear about which benefits and risks mattered the most to them.
- 3.3% reported they did not feel their surgery was the best choice for them.
Unsurprisingly, 44% of the patients who had surgery during the COVID-19 stay-at-home period felt uncertain about their surgery. And almost 20% of these concerns were directly related to COVID-19 concerns. In contrast, only 17% of those who had surgery after the stay-at-home period felt uncertain about their decision to have surgery.
In addition to worries about COVID-19, many patients expressed concerns about the outcome, recovery, and wound healing.
Importantly, non-white patients without a college education had the highest rates of decisional conflict. The researchers surmised there may be inadequate shared decision-making for this population due to a lack of doctors who are ethnically, culturally, and physically like them.
The results of this study indicate the need for better shared decision-making before surgery, to help patients understand their risks and benefits of their options.
How can you participate in shared decision making?
Understanding all pertinent medical information is critical to making a good decision. Follow these suggestions when having conversations with your doctors.
Making testing decisions.
Importantly, if your doctor recommends testing or preventive screenings, learn about the potential benefits and drawbacks, including the effectiveness, risks, access, and cost.
Ask these questions before agreeing to a test or screening:
- What do you (the doctor) expect to learn from the test?
- How will the test results impact diagnosis and treatment?
- How reliable and effective is the test?
- What are the risk factors of the test?
- If the risks seem high, are there any alternative ways to get a diagnosis?
- What would happen if I (the patient) did NOT have the test?
- Will my insurance cover it?
- Where can I get the test?
Finally, be honest with yourself and your doctor regarding your likelihood of following through with the recommended tests or screenings. Don’t agree to a test or screening when you have no intention of moving forward.
Making treatment decisions.
Importantly, make sure you understand each option, including what is involved, the likelihood of success, and the potential side effects. Therefore, I recommend the following questions:
- What are all the available options? What are the advantages and disadvantages of each option?
- Are there any clinical trials available?
- Do other doctors or hospitals offer different options?
- How long is the course of treatment?
- What are the expected results?
- What are the possible short-term and long-term side effects?
- How will we know if the treatment is working?
- What if we do nothing and take a “wait and see” approach?
If surgery is likely, ask surgeons these questions:
- How many surgeries like mine do you perform each year? (It’s important for a surgeon to have performed a minimum of 15 to 20 procedures per year.)
- What are your complication rates?
- What is your 30-day mortality rate after surgeries? (This is the number of patient deaths within 30 days after surgery, either in or out of the hospital.)
Once you’ve discussed your treatment options with your doctor(s), consider these factors when making a treatment decision:
- Expected outcome.
- Type and length of treatment.
- Success of treatment in similar patients.
- Possible side effects – the severity and duration.
- How likely you will comply with treatment requirements.
- Location of treatment.
- Insurance coverage, or expected cost, for proposed treatment.
A few more thoughts.
Never feel afraid to get a second opinion – you will not be insulting your doctor! For more information, read my blog post: Why are Second Opinions Important?
And, throughout any medical journey, if something doesn’t seem right, speak up!
Since it’s important to fully engage in your care, read these blogs for more tips:
- Why Take Detailed Notes at Doctor Appointments?
- 10 Tips to Communicate Better with Doctors.
- How Can You Get the Best Healthcare? Actively Participate!
- Can you Trust Medical Information Online?
- Can You Trust Advice from Other Patients?
- Understanding Medical Information Is Harder Than Most Realize.
- The Dangers of Too Many Medical Tests and Treatments.