Making tough medical decisions with chronic illness

Living with a chronic illness means making regular and sometimes tough medical decisions. While some conditions require a clear treatment plan with no alternative options, other times your doctor will describe multiple options, tests, prescriptions or combinations of strategies to help manage your health.

In those more complex situations, research shows patients actively collaborating in the treatment decision-making process have better health outcomes. In fact, Mayo Clinic has an entire resource center to help doctors and patients nurture such “shared decision making.”

Of course, building this kind of relationship with your doctor isn’t simple. And it involves many external barriers—some you can control, and some you can’t. While different strategies will apply depending on circumstance, research shows some tactics more likely to help you navigate medical decisions. Hopefully the ideas that follow can help.

medical decisions

“Top physician, nurse leaders carve out time for patient care” by Army Medicine is licensed under CC BY 2.0

Consider your communication style.

Patient-centered communication and care go hand in hand with shared decision making. In patient-centered communication, care professionals explain treatment options in a way that takes the patients, their loved ones, values and context into consideration. (Here’s a chart that breaks down what that looks like.)

The ideal patients, according to “Patient-Centered Communication and Shared Decision,” are “active communicators, asking questions, assertively stating their opinions, introducing new topics of conversation, and discussing their concerns, feelings, or preferences when communicating with their clinicians.”

That’s a hard thing to achieve. But it starts with learning your most comfortable style of communication. If you don’t know, take some time to reflect on your personal communication style. Write down your reflections. Or talk about them with a friend. You can even try an online assessment. Here’s one from the author of a book on decision making.

Knowing yourself a little better in that way can help you ask for what you need. You may also decide to seek care professionals who have a style more closely aligned with your own.


Keep looking until you find the right doctor.

While there are many qualified doctors out there, they have different communication strategies. You should never feel bad for changing doctors if one isn’t working for you. If things like insurance coverage or limited access to specialists make it more difficult for you to switch, the next few strategies will be more important.

Be Your Own Health Care Advocate” talks more about building the right health care team.


“Cross Of My To Do List” by Alan Levine is licensed under CC BY 2.0

“Cross Of My To Do List” by Alan Levine is licensed under CC BY 2.0

Prepare for appointments.

Communication is of course a two-way street. Remember that a good relationship with your care professionals requires effort on your part. Practice the same relationship skills you do with a friend: be open and honest, be on time and listen carefully.

Similarly, your appointment will go more smoothly and you are more likely to avoid confusion if you prepare beforehand. Take notes and be clear about what you want from the appointment so you get enough time.

Understanding your own condition helps. Even very educated people don’t understand complicated health topics, so if you don’t know how to accomplish that, ask your doctors.

The Informed Medical Decisions Foundation offers many helpful resources for navigating the health care world, including  how to become an “activated” patient and a worksheet for appointments.

CVC’s own prepared patient checklist can help too. Download and print it before appointments.


Seek resources to help.

If you can’t change doctors, one solution is seeking help from a caregiver, family member, friend, or even hiring a patient advocate. These people can be tasked with the sole concern of attending appointments and communicating what you need to explain or understand better. That allows you to focus on the many other things you are responsible for.

You can also find tools for considering medical options and making decisions. Patients who use professional decision aids, studies show, are more informed and better understand any risk involved.

If you’d like to try a decision aid, ask your doctor whether there are tools in place for your specific position.


Consider second opinions for big decisions.

Finally, if you have a big decision to make and feel uncertain after your regular doctor explained your options, don’t be afraid to ask for a second opinion.

Many patients don’t ask for a second opinion for fear of offending their doctor, according to the Cleveland Clinic. But, as their guide points out, a second opinion can improve your health, which is in both of your best interests. All doctors have varying levels of experience with different conditions. Second opinions can open doors and offer peace of mind.

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