For most of us, there will come a time in our lives when we are sitting in an exam room and the doctor says some dreaded word: cancer, COPD, diabetes, congestive heart failure. We all have our own individual notions of what these diagnoses mean. People may overreact or underreact. It’s important to tap into the doctor’s knowledge of your diagnosis. People who have the facts and professional opinions about their conditions are empowered to make the best decisions in care management and life planning. Here are twelve questions everyone should ask when diagnosed with a serious illness.
Will you help me take notes?
The doctor may or may not have some teaching sheet to hand you. Regardless, your own personal notes about your condition are likely to help in addition to a teaching sheet. Ask the doctor to tell you if something he or she has said is a point you should write down. Don’t expect doctors to take notes for you. They have horrible handwriting and an industry-specific vocabulary. Taking your own notes on what the doctor is telling you will work best for you. Ask for pen and paper? In general, patients should come prepared to doctors’ offices with pen and paper. If, today, you don’t have it, that’s okay. You’re in an office. Ask for a pad and a pen to take notes. They won’t mind.
How long do we have to discuss this?
Doctors may schedule anywhere from 15 minutes to 90 minutes for this type of appointment. It will help you to know how long the doctor is planning to be in the room. If your appointment is for fifteen minutes, it’s easy enough to see what you can accomplish in that time and then schedule a follow-up appointment for a more in-depth, care planning conversation. The doctor can focus on your needs better if everyone is clear about appointment times and the appropriate amount of time is on the schedule.
Is this disease curable?
It’s helpful to know if this disease is something you will have to manage for life or something you can actually cure. Doctors sometimes use the term “remission.” This is different from curable or incurable. Remission means the disease is still there, but its effects have been managed so well that you don’t currently need drugs or surgery. For instance, newly diagnosed, adult onset diabetes can be put in remission through diet and exercise. Most people fall short of the lifestyle changes necessary, but it’s worthwhile to know if remission or cure is an achievable goal.
Is this disease likely to shorten my life?
Misunderstanding about this question is pervasive and well documented. In one study, nearly half of patients reported not knowing their disease was life-limiting, even though the medical records documented a conversation about it.1 In a different study, six out of ten cancer patients unknowingly had a different opinion about life expectancy from their doctors even though it had been discussed.2 In that same study, one out of ten cancer patients knowingly held a different opinion on life expectancy than their doctors – which is fine.
What are the survival rates?
In the early stages of a serious illness, it’s nearly impossible for anyone to know how one individual will respond. Towards the end of life, clinicians can prognosticate length of life with more accuracy. When patients have a year or more to live, sometimes it’s better to think of life expectancy in terms of survival rates. A patient may ask “What are the one, five, and ten-year survival rates for people with my condition?”
Some patients do not want to know their life expectancy. It’s important to discuss your preferences about prognostic disclosure whether you do or don’t want to know.
What are my treatment options?
What is the likely outcome of this treatment?
How will this treatment make me feel?
What is the likely outcome if I do not choose this treatment?
When should I consider palliative care?
In some phases of living with a disease, specialized services focused on symptom relief, emotional support, and personal care should be the secondary or even primary focus of care. Your regular doctor provides palliative care, but at certain points, you may want to see a team or enter a program that specializes in it. Hospice is one example of palliative care. It’s important to choose hospice at the right time. In addition to improving symptom control and quality of life, well-timed hospice admission correlates with survival improved by days to months.
What else should I be asking at this point?
When discussing care planning around a serious illness, it’s important for patients to take leadership in the conversation. The doctor can’t fully know what you already understand and what you don’t, so you have to ask questions. However, it’s also very important to give leadership to the doctor at the beginning and end of the conversation. “What else should I be asking at this point?” helps make sure you fully avail yourself of your doctor’s expertise.
May I say this back to you?
It’s part of the human condition that we try to say one thing, and people hear something different. This phenomenon of communication is even worse in the exam room. Hearing about a serious diagnosis puts patients in a heightened emotional state that makes listening harder. On top of that, there is the natural complexity of healthcare. A good strategy is to read your notes back to the doctor in your own words. This relays what you heard and gives the doctor a chance to address any misunderstandings.
Whether it’s about ourselves or a loved one, most of us will encounter a serious diagnosis in the exam room at some point. It can be an emotionally charged experience. However, when equipped with the right questions, you will be empowered to make the best decisions and maximize your own quantity and qualify of life.
- Fried T, Bradley E, O’Leary J. Prognosis communication in serious illness: Perceptions of older pa-tients, caregivers, and clinicians. Journal of the American Geriatric Society. 2003; 51 (10): 1398-1403.
- Gramling R, Fiscella K, Xing G, Hoerger M, Duberstein P, Plumb S, Mohile S, Fenton JJ, Tancredi DJ, Kravitz RL, Epstein RM. Determinants of patient-oncologist prognostic discordance in advanced cancer. JAMA Oncology. 2016 Nov 1;2(11):1421-6.