Mariken Stegmann

Furthermore, some patients who prioritised maintaining independence explicitly indicated  that quality of life was very important to them. This also applied to patients who, according  to their patient record, lived very independently with a small social network. Patients with a  high OPT score for reducing pain were often those recorded as experiencing pain in their  medical records. Rating a goal as unimportant was found for one patient in the early phase  and one in the late phase patient, with these explicitly stating that extending life was no  longer important, consistent with giving low scores in this domain (Q3).  Six patients had several treatment options described in the patient record, and the  considerations for the  treatment choice related to goals were described explicitly for two of  them. In both cases, the patient opted to refrain from active treatment after ample  consideration of the risks and benefits, as reflected by low scores for extending life (Q4).  Both patients also explicitly discussed their treatment options with their GP. In one of these  two cases, as well as in another two cases, the medical specialist and GP discussed  treatment options and/or goals by phone contact. For most patients, the goal of the chosen  treatment matched the goal prioritised by the patients during the OPT conversation. For two  patients, however, the goals and chosen treatment did not match: both scored low on  extending life, but they chose a life‐extending treatment.  Q2: Patient is down to earth and has a clear opinion during the conversation. She  feels vital and would very much like to try treatment in order to live longer.  (065,  GP record)  OPT scores: 100‐90‐0‐0 (extending‐independence‐pain‐other)  Q3: Patient lives alone, does have domestic help, still cooks for himself, does his  own grocery shopping, otherwise he spends a large part of the day sitting in a  chair. His hips are painful, sagging leg, hasn’t yet received radiotherapy, doesn’t  want to (…). Doesn’t want chemotherapy either. (…) “I am 84, what more do you  want?”  (266, hospital record)  OPT scores: 60‐90‐80‐30 (extending‐independence‐pain‐other)  Q4: Patient is concerned about the side‐effects of treatment and their impact on  his daily routine. After joint consultation with the geriatrician and me, patient  refrains from treatment. He realises that if we don’t treat the tumour now, he will  develop symptoms and will probably die due to tumour progression.  (238,  hospital record)  OPT scores: 30‐50‐60‐60 (extending‐independence‐pain‐other)  Reasons for goal changes during follow‐up  We deducted three themes in relation to changing goals:  symptoms , the disease course , or  life events  (Table 2).  Changes related to s ymptoms were observed most often. For patients who lowered their  score on maintaining independence, a deterioration in their overall condition was described.  According to the text entries, patients who experienced more pain over the course of their  treatment changed their goals to give more importance to reducing pain during subsequent  follow‐up (Q5). Similar explanations were observed for changes in the goal of reducing other  symptoms. When patients started to experience fatigue, or when this was aggravated, their  goal to reduce other symptoms changed accordingly. One patient changed several goals  5 59 Treatment goals and their changes over time