To treat or not to treat: who should decide?

Mr. C was an aristocratic, 79-year-old Surinamese man. He visited my outpatient clinic because of a pT4aN1a colon carcinoma. After surgery, he went to a rehabilitation center, but he was improving day by day and was determined to get home as soon as possible. Given his high-risk colon carcinoma, he had an indication for adjuvant chemotherapy with capecitabine and oxaliplatin. However, adjuvant chemotherapy could also hamper his rehabilitation process.Together we extensively discussed the pros and cons of adjuvant treatment. Afterward, Mr. C seemed quite certain: the increased chances of living without cancer outweighed the risk of side effects of chemotherapy.Nevertheless, I suggestedhethink itoveranddiscussthe issue with his relatives. Two weeks later, Mr. C came in again, accompanied by his sister. Despite the hesitations of his sister (“Isn’t quality of life farmore important thanquantity of life?”), it seemed as if he was even more determined to start adjuvant treatment.Hisphysical conditionhad remarkably improved, and, after hehad received furtheroral andwritten informationon the specific treatment regimen fromouroncologynurse,wedecided to start chemotherapy. When I saw him after the first course of chemotherapy, he looked quite well. When I asked him about the past 3 weeks, however, he told me they had been awful. Mr. C was in serious doubt: with respect to his chances of survival, he wanted to go for themaximum, but this reduction in quality of life was really not what he wanted. Although I could not pin down the exact toxicity he had experienced, themessagewas clear: hewas not going to complete adjuvant chemotherapy in this way. For amoment, I consideredadosereductionofoxaliplatin,butthen decided to propose stopping oxaliplatin altogether. The added benefit of oxaliplatin to capecitabine in patients older than 70 may be limited [1], and oxaliplatin presumably was the major causeofmypatient’s feelingsofweaknessand reducedwalking ability. Also, I had the impression that the next course would be “make or break.” If it did not go well, he would probably completely stop his adjuvant treatment, which would be a pity givenhiswishtogoforthegreatestchancesofsurvival.Mr.Cand his family agreed to continue with capecitabine monotherapy. I sawMr.Candhis sisteragain4weeks later. In fact,hewas1 week late; he had accidentally extended his capecitabine-free period by 1 week. Nevertheless, he told me he felt terrible: he had lost weight and was using his cane to walk. He actively announced he wanted to reconsider chemotherapy (Fig. 1). I askedhimtosteponthescales:64kg.Thiswasexactly thesame weight as when he started chemotherapy.Why thenwasMr. C tellingme he had lost weight? Andwhy did he complain about walking with a cane? He had been walking with a cane all the time!Again,Mr. C reported side effects of chemotherapy that I couldnot really confirm.How to continue?Adose reduction of capecitabine might help, but by extending his capecitabinefree period, Mr. C had already effectively performed a form of capecitabine dose reduction. Was a further dose reduction goingtohelphim? Ididnot think so.Wasn’tMr.C actually telling me hewanted to stop the treatment? I asked him so (Fig. 1). He denied this. Stoppingwas not really what he himself wanted to suggest. Hewanted to knowmyexpert opinion. I explained that in his case the choice to stop or to continue treatment was not just amedical decisionbutadecision thatneeded input fromhis side, too. Technically speaking, I had no formal reasons to stop adjuvant chemotherapy. Mr. C was clinically well, laboratory resultswerewithinacceptable limits, and therewerenograde2 or higher toxicities, so if Mr. C wanted to continue, we could continue.ButMr.C insisted,“Youare theexpert” (Fig. 1). I paused for amoment.What was going on?Why didMr. C not simply tell me he wanted to stop, rather than insisting on my medical expertise? I decided to change gears and asked him how a decision to stop treatment would make him feel. When he swiftly responded,“Relieved,” I simplymade thedecision to stop. We talked a couple of minutes more about the logistics of follow-up. Then, Mr. C and his sister left the room—relieved. I stayed behind—confused and irritated.Why had I made this decision when I feel so strongly that this kind of decision making should be shared between a doctor and a patient? Being trained in the age of patients’ autonomy and rights, shared decision making is a natural part of my consultation with cancer patients [2]. Across cultures, different decisionmaking models can be identified [3], but, as a doctor in The Netherlands, I have a legal obligation to inform my patient adequately about the pros and cons of a treatment, and I cannot start treatment without the patient’s explicit consent [4]. Although some decisions concerning starting or stopping oncological treatment are clearly medically preferable (e.g., hematological grade 3 toxicity precludes continuation of chemotherapy), many decisions concern a clinical equipoise (i.e., options are equivalent and all appropriate). At this moment, both continuing and stopping adjuvant treatment couldbe consideredappropriate forMr. C fromamedical point of view. In such a case, the only adequate way to reach