This is how you decide with the doctor

Tip 1: Actively invest time and effort in building a good relationship with your doctor

Communication is a two-way street; don’t just leave it up to your doctor to make sure you know, understand, and trust each other as best you can. Be yourself and treat your doctor like someone who wants your best but can also make mistakes. Ask questions if you have them and contradict if you feel it is necessary.

Gerda Schapers (65), teacher and trainer, has had bowel cancer since 2010.
“When the oncologist said: ‘You have colon cancer, you are getting chemo’, I agreed. I was overcome by the emotions. After six courses, the tumor in my intestines had shrunk enough to be operated on. But I had metastases in my liver. It is impossible to get better, every treatment is only life-prolonging. I then decided: no more chemo for me. I had been very tired and nauseous during those six courses, and more importantly, I was unable to work as a result.
I asked my oncologist, “Are there other options?” “Not in our hospital,” he said. But he e-mailed me a list of possible treatments and critically thought along with me when I looked into it. I finally decided to undergo treatment at a university clinic in Germany, where they only administer the chemo to your liver and not to your entire body. I had to pay for this TACE treatment myself, the insurer will not reimburse it because there is insufficient evidence that it ensures a longer survival in my type of cancer. I didn’t want to lose my own doctor, so I asked him to remain my primary care provider. Luckily he said yes!”

Tip 2: Tell your doctor what may be important for your treatment choice

Doctors need information to help you decide what treatment is right for you. On behalf of hospitals and other healthcare institutions, Corine Jansen asks patients and residents what they feel about, what they encounter and what they need. Jansen: “The doctor is a medical expert, but the patient is the only one who knows what is really important to him or herself. And therefore the only one who can make the decision with some very difficult choices.”

Here’s what you can do in the doctor’s office: Don’t just tell your doctor everything about medical matters, but also about your social life. For example, whether you have a job, volunteer work or a hobby, and how important they are to you. Also tell about the physical and mental demands of those activities. Tell them if you have children or grandchildren and if you enjoy spending a lot of time with them.

Tip 3: Take a break between the diagnosis and your treatment decision

If you have just been told that you are seriously ill, now is not the right time to make a treatment decision. Postpone that decision until the next consultation. There is almost always time for that. Use that time to let the bad news sink in in your own environment and to read and discuss the information you have been given with your loved ones. In the meantime, your specialist can consult with colleagues in the hospital and with your general practitioner. They often have good ideas about what is a suitable treatment option for you. This way you will both be well prepared for the next appointment and you can make an informed decision together.

You can do this in the consultation room: Indicate how much time you need before you are ready for the next conversation. Don’t make a decision if you’re not ready.
You can do this at home: Write down your questions and email them to your doctor before the next appointment, in preparation for the interview.

Tip 4: Collect enough information to be able to participate in decision-making

You need a lot of medical information to be able to participate in the decision-making process. You need to know what is wrong with you, which treatments are available and what the pros, cons and risks of those treatments are. And you want to know that not only at the beginning of the treatment process, but also later. For example, if you are convalescing or receiving follow-up treatment. It is not self-evident that your doctor will know how much information you need: 17 percent of cancer patients need more medical information than they receive from their doctor.

Here’s what you can do in the doctor’s office: Help your doctor estimate how much information and (sometimes harsh) truth you can handle. Let us know if you want to know more or want more clarity. And ask where you can find reliable information on the internet.
You can do this at home: Become a member of the patient association; they can tell you a lot there too.

Tip 5: Seek help if emotions prevent you from thinking rationally about your decision

An illness is not only an attack on your body, you can also become very emotionally upset. Anxiety, sadness, stress and uncertainty can cause chaos in your head. As a result, you may forget important things or not concentrate properly on the conversation. Accept that as long as you are so emotional, you cannot handle and process all of your doctor’s information. And ask for help to regain emotional balance.

Tip 6: Help your doctor choose on your behalf

Perhaps you belong to the group of people who do not want to participate in decision-making. For example, because you prefer to leave such an important decision to someone who has studied for it. Or because you’re afraid you’ll regret whatever you decide. Corine Jansen: “If you want your doctor to make a decision for you, don’t ask: ‘Doctor, what would you do?’, but ask him to make a decision that suits you. Give your doctor the information that will help him make choices that fit the quality of your life.”

Here’s what you can do in the doctor’s office: Tell your doctor that you don’t want to participate in the decision-making process, but do want to help him decide which treatment is best for you. If you don’t share that information, your doctor may make wrong assumptions and make choices that don’t suit you.
You can do this at home: Discuss with your loved ones that you do not want to participate in the decision-making process and ask them to support you in this.