Mariken Stegmann

after having a conversation with his GP, concluding that chemotherapy had several  unwanted negative side‐effects. For changes related to the disease course, we observed a  decrease in the value of extending life after patients had heard that their disease had  progressed despite treatment (Q6). On the contrary, patients tended to give a higher value  to extending life if they had recently started a new treatment. Changes related to  life events were observed for three patients. One was in response to celebrating the birthday of his  102‐year‐old mother, which resulted in him also wanting to live longer, as reflected by a  higher value on this domain (Q7). However, two other patients reported that the death of a  close relative lowered their desire to extend life.  Q5: Conversation about the course of events. Patient complains about more  fatigue and more pain.  (180, GP record)  OPT scores: 30‐70‐50‐50 from 30‐80‐30‐60 (extending‐independence‐pain‐other)  Q6: The CT scan shows progression of the primary tumour (mediastinal, hilar)  and progression of the bone metastases. Patient opts for supportive care. The  option for another chemotherapy exists, but she has so much pain and has  deteriorated so rapidly, that she doesn’t want to continue chemotherapy to  possibly slow down the illness, but then probably with so much back pain.  (216  hospital record)  OPT scores: 10‐60‐80‐70 from 50‐90‐80‐70 (extending‐independence‐pain‐other)  Q7: Besides short of breath on exertion, he feels very well. His mother just turned  102, he wants that too. ( 012 GP record)  OPT scores: 80‐80‐20‐20 from 30‐30‐80‐80 (extending‐independence‐pain‐other)  Reasons for goal stability during follow‐up  Three themes related to stability:  stable situation , disease‐unrelated motivation , and  stability despite symptom increases  (Table 2).  For all patients in a  stable situation,  text entries described that they did not experience  changes in disease symptoms, that their condition was generally stable, and that they had  few or no treatment‐related side‐effects. As such, there seemed no reason to adjust their  goals (Q8). Some (n=2) patients appeared to determine their goals based on some disease‐ unrelated motivation  that did not change during follow‐up . For example, a patient who  valued extending life highly said that this was important because of his religion (Q9). In  seven patients, we observed  stability despite symptom increases . According to their medical  records, these patients had an increase in disease‐related symptoms and/or experienced  substantial side‐effects from therapy. However, they did not adjust their goals or scores  related to reducing pain or other symptoms (Q10). No reasons were identified.  Q8: No new complaints or insights. Wants to leave the OPT scores as they are. (036, GP record)  OPT scores : 40‐60‐20‐10 (extending‐independence‐pain‐other)  Q9:  She [spouse] says that her husband will die when it’s his time. She wants to  keep him with her for as long as possible. They won’t just “throw in the towel.” (203 hospital record)  OPT scores (extending‐independence‐pain‐other): 90‐10‐70‐40  60 Chapter 5