If you have a serious illness, making decisions about your medical care can be quite tricky. Treatments that may be safe and effective for healthier patients may have different benefits, risks, and even burdens for you. Take a few minutes at each of your medical visits to strengthen your understanding of your condition and the decisions you may have ahead of you. By doing so, you can ensure that you will be ready when you have an important decision to make about your course of treatment.
Diagnosis, Disease Course, and Prognosis
In preparation for your next medical visit, review what you have been told about your condition and how it might progress. Focus on the next couple of years. If you are uncertain about what your diagnosis is and what you might reasonably expect, ask your doctor to review your condition with you. Ask your doctor what symptoms you are likely to experience and which are the ones you should be most concerned about. Ask how your condition might affect your family, home, or work life as it progresses.
Decisions You May Have Ahead of You
You might also benefit from familiarizing yourself with the specific care and treatment decisions that you might have to make over the next few years. Ask your doctor what these decisions might be, such as medications, surgery, or adjustments to your living situation. If you are an elderly patient with a serious illness, or a family member of one, talk with the doctor about hospitalization and whether alternatives to hospitalization might exist. For example, some patients may be treated comfortably at home for shortness of breath or some types of infections, avoiding complications such as weakness and confusion that can occur during a hospital stay. While some of these possible decisions may be unpleasant to think about, knowing what might happen in the not too distant future will give you the time and space to consider these decisions in light of what is most important to you.
Benefits, Risks, and Burdens of Treatments
If you are offered a particular treatment, ask your doctor what the benefits might be for a patient like you. You should also ask how likely it is that the treatment will deliver these benefits. Your doctor should explain what the risks of the treatment are for a patient like you. For patients with serious illness, the burdens of the treatment may be quite important to consider. The term “burdens” refers to the work required to be a patient or to pursue a treatment, from making visits to receive care to managing an intensive medication schedule. For example, a treatment may modestly improve your lung disease, but may require weekly visits to a clinic. If getting out of the house on weekdays is a major challenge for you and your family, you might ask your doctor about how the alternatives compare on effectiveness, safety, and burdens. Ideally, you and your doctor will consider together which treatment is most compatible with your goals and lifestyle.
Be proactive in working to increase your understanding of your illness. Obtain a bit of information at each visit so you will have time to think about, understand, and cope with what you have heard. Bring a friend or family member with you, as most of us have difficulty recalling everything we hear at a busy office visit. With preparation and communication with your doctor, you can ensure that you will be ready to make wise, informed treatment choices when the time comes.