How do you choose the good between two evils?

Annemieke de Haan runs a nursery in Hillegom together with her husband. A beautiful, healthy 39-year-old woman. Yet last year she faced an almost impossible medical choice. Genetic testing revealed that she has a hereditary predisposition to breast cancer. In the hospital, the doctor offered two options: removing her breasts as a precaution or an intensive breast check every six months for life. The first option would greatly reduce the risk of developing breast cancer: from 80 percent to less than 10 percent. But that meant a major operation and continued life without breasts. If she opted for regular checkups, she could keep her breasts. On the other hand, she would have to live with uncertainty: what if the cancer struck? Would the doctors catch up with it in time or would it kill her?
Annemieke de Haan is not the only one who has faced a far-reaching medical dilemma. Every day, hundreds of people are faced with life-and-death choices, with risks and opportunities that are already difficult for doctors, let alone laymen, to assess. Moreover: can you as a patient make a sensible choice, while the fear grabs you by the throat? Annemieke: “Half of the women with a hereditary predisposition to breast cancer opt for preventive surgery, the other half do not. That indicates that there is no right or wrong choice. Doctors cannot provide absolute certainty, no matter what you choose. You have to choose between two evils. You try to think as rationally as possible, but you hardly succeed. It’s terribly hard not to let fear control you.”

Unnecessarily scared

“It used to be simple,” says Julia van Tol. As a scientific researcher at the UMC St Radboud in Nijmegen, she is concerned with how patients make decisions. “In the past, the doctor would tell you what was good for you as a kind of father figure. As a patient, you followed that advice blindly. Now patients want to participate. They inform themselves on the internet and come into the consulting room better prepared.”
That applies just as much to younger as it does to older patients, says Van Tol. “Many doctors think that older people don’t want to be burdened with complicated information about medical choices.” Her research shows the opposite. Van Tol asked prostate cancer patients with an average age of 70 whether they wanted to participate in the decision-making process about their treatment. 80 percent said yes. Van Tol: “It stands or falls with the information that people receive. You have to inform people as neutrally and clearly as possible about risks and opportunities. Information is often global and concerns the average patient. You can’t just translate that to your individual situation. To make a good choice, you need to know what the risks and opportunities are for you personally, taking into account specific factors such as age, complaints and background.”
However, not every well-informed patient wants to participate in the decision-making, says Van Tol: “As the disease
is more life-threatening, patients are more likely to pass decisions on to the doctor. Not everyone wants that responsibility.”

Operate preventively

That did not apply to Annemieke de Haan. “It’s about my body, my future. I want to decide that myself. That is precisely why I decided, together with my sister, to have genetic research done. Three of my father’s four sisters had breast cancer. We wanted to know whether we too were hereditary.” Yet she soon learned how relative freedom of choice can be. “Even before the results of the genetic test became known, it turned out that my sister had no choice anymore. The cancer had caught up with us. She had a malignant tumor in her breast. Then you think: choose yourself, what is this about?”
Shortly afterwards, she herself discovered a lump in her breast. “That was fortunately benign, but it felt like a time bomb in my body.” Annemieke made the decision: she decided to have her breasts amputated. Because her risk of ovarian cancer is also increased – an aggressive form of cancer that can develop very quickly – she also decided to have her ovaries removed as a preventive measure.
“My sister’s illness, the severe treatment and all the emotions that go with it, made it clear to me: I didn’t want to live with a thunderstorm over my head. Then cancer would take over my life. I have three beautiful daughters and a husband who cannot miss me. You can think: oh how bad, my breasts gone, a mutilated body, early in the menopause. But I wanted to see the sun, get on with our lives.”
Would she have decided differently if her sister hadn’t developed cancer? “Maybe I had thought about it longer, but I think I would have made the same choice. When you face such a drastic decision, you realize what really matters to you. My femininity doesn’t just depend on my breasts. I’m glad my husband feels the same way. “It’s simple,” he said, “I want you. Living.'”

spicy food

Annemieke de Haan was intensively guided in her choice by doctors and a social worker from the hospital. She also attended breast cancer association meetings, where women talked about their decision to have surgery or not. In some hospitals, such as the Leiden University Medical Center and the UMC St Radboud, they go one step further to help patients make difficult choices. Van Tol and her colleague Peep Stalmeier are developing so-called decision aids that accurately map the possible outcomes and risks of various treatments. For example, men with prostate cancer in the radiotherapy department of the UMC St Radboud were presented with a choice between treatment with more or less radiation. Usually prostate cancer patients are treated with a standard dose. More radiation gives more chance of healing, but also more chance of serious side effects: intestinal complaints, impotence, urination problems. Van Tol: “Would you choose to live a year longer, even if this means there is a greater chance that you will no longer be able to leave the house due to incontinence? For some, a greater chance of a cure is a priority, for others, avoiding side effects is more important. We want to give people a fair choice.”
During an interview, patients were presented with a decision aid*, in which the different treatments were compared step-by-step on the basis of the chance of cure and side effects. The information was adapted to the age and specific complaints of the patient. Van Tol: “At first many people were hesitant. “I’m just a layman, I can’t see that,” they said. Of course it is spicy food. Confronting too. But after hearing the whole story, most said, ‘I do have an opinion.’”

Quality of life

“I’m not one to put everything in the hands of doctors,” says Jan van Esch (78). “I went to the doctor myself when I suspected that something was wrong with my prostate. I liked that I could participate in decisions. After all, it’s about my life.” Van Esch is positive about the decision aid: “You got a picture of the risks and opportunities in a clear, comprehensible way.” He did not find the choice difficult: he immediately opted for the greatest chance of recovery. “There were serious disadvantages to this, such as a greater chance of impotence. Oh well, I’ve had my time, I can think of other things to be nice to my wife too. The operation went well. I did have a lot of trouble with my intestines and suffered an inguinal hernia. But for me the most important thing is that I am clean and that I have done everything I can to get better.”
Herre van Kampen (80) was diagnosed with prostate cancer four years ago. He is also very pleased with the decision aid, but he found it difficult to choose. “I struggled with the potential loss of erections. But would I have to risk my health for that? If things go wrong, don’t you blame yourself later?” After extensive family consultation, Van Kampen opted for the lower dose of radiation. “I would like to live a long life, but the quality of my life is also worth a lot to me.” Van Kampen’s radiotherapist thought a higher dose was more sensible. “In the end we ended up in the middle, I was at peace with that.”

With the best intentions

Watertight guarantees does not provide a decision aid. Not even if people opt for the most radical treatment. Van Tol: “We cannot remove the uncertainty, but we hope that we will make the choice a little easier for patients.” Research into the effect of various decision aids shows that patients with a decision aid know better which treatment they want, change their mind less often and postpone their therapy for a shorter period of time. Van Tol suspects that they also accept any discomfort better if they have made a conscious choice, but this has not yet been demonstrated.
Of course, not every medical condition lends itself to a decision aid. Van Tol: “In the case of a broken leg, for example, it is very clear what the best treatment is. And that applies to three quarters of all ailments. For the rest, there are several options that are equally good, each with their pros and cons. However, doctors don’t always tell their patients that. Doctors tend to choose the treatment with the best chance of a cure. They do it with the best of intentions, but it doesn’t always match what weighs most for the patient.”
Moreover, doctors are not always able to estimate what their patients find important, as Van Tol showed in a study. For example, doctors expected that less than 60 percent of the patients wanted to participate in the decision-making process, while that turned out to be 80 percent. Doctors also found it difficult to predict what patients would choose. Before talking to their patients about the different options, the doctors thought that half of the patients would opt for a low dose, with fewer side effects. In reality it was 75 percent. The doctors themselves had a preference for the low dose only in 20 percent of the cases.

Millstone around the neck

The gap between doctors and patients does not surprise Arja Kleijkamp. She has a general practice in Utrecht. “Specialists don’t see their patients as often as the GP. And it is sometimes difficult for them to imagine what side effects such as incontinence can cause misery in daily life.” She often sees patients knocking on her door after urgent advice to undergo surgery, full of doubts and questions. “Specialists have their own interests. Sometimes they propose treatments too rosy. I also sometimes suspect that they are operating because that brings in money.”
The doctor does not always know what is best for you, she tells patients. “People have become more empowered, but the idea that the doctor will know is still very much alive. As a doctor, the trick is to put yourself in the patient’s shoes as well as possible and to be open to what someone finds important in life, even if you were to make different choices yourself. Frankly, that doesn’t always work. I also have my own standards and values. On the other hand: if you push someone over the threshold and it turns out wrong, you often have to clean up afterward.”
Kleijkamp is pleased that not all responsibility hangs around the neck of doctors like a millstone. “I think it’s better for patients too, but that doesn’t mean it’s gotten any easier for them.”

*In a decision aid, different treatments are compared on the basis of risks and opportunities. Thanks to the decision aid, patients change their mind less often and postpone their therapy for less time.

Is there a decision aid for you?

With a decision aid, patients gain better insight into the advantages and disadvantages of treatments and can thus make a choice that suits them best. There is a decision aid for various disorders, including breast cancer, prostate cancer, cardiovascular disease, diabetes and depression. Your doctor can help you with it. Decision aids can be found on the internet at www.kiesbeter.nl (choose ‘medical information’) and at decisionaid.ohri.ca (in English).