PMC:7305592 / 23116-26024 JSONTXT

{"project":"2_test","denotations":[{"id":"32560645-12925269-13164270","span":{"begin":973,"end":975},"obj":"12925269"},{"id":"32560645-17761061-13164271","span":{"begin":977,"end":979},"obj":"17761061"},{"id":"32560645-10819707-13164272","span":{"begin":2559,"end":2560},"obj":"10819707"}],"text":"Satisfaction with treatment decision is linked to negative feelings about treatment decision\nMost of the relatives were, in hindsight, satisfied about the patients’ choice to start treatment (78%), even if none of the goals were achieved (70%). These results are comparable to the patients’ and oncologists’ view regarding making the right decision to start treatment (patients: 79% and oncologist: 96%) even if none of the goals were achieved (patients: 72% and oncologists: 93%) in the previous study of Mieras et al (Mieras et al.: What goals do patients and oncologists have when starting a medical treatment for metastatic lung cancer?, submitted). It is known that measuring satisfaction is not without problems. It holds the risk of creating a positive bias which could, for instance, be influenced by the desire to give a socially desirable answers or, according to cognitive dissonance theory, a tendency to assess one’s situation or actions as good in hindsight [20, 21]. Nevertheless, the fact that we found over half of people who were satisfied with the treatment decision described negative aspects related to the decision taken shows that satisfaction does not encompass the relatives’ entire experience. The most mentioned negative aspects were that the treatment did not work and that there were burdensome side effects of the treatment. These negative aspects should be taken into account when deciding to start a treatment with a relatively low chance of success and high chance of side effects e.g. by managing expectations of patients and relatives with clear communication and highlighting the option of palliative or supportive care to treat side effects.\nNext to negative aspects related to the treatment decision taken, many relatives also mentioned positive aspects. It was most frequently mentioned that it was positive the patient tried everything. Previously, we found that this was also an important aspect for the patients and oncologists (Mieras et al.: What goals do patients and oncologists have when starting a medical treatment for metastatic lung cancer?, submitted). Additionally, it was important for many relatives that the patients’ wish for treatment was followed, even when the relatives themselves felt that the treatment might have gone on for too long. Notably, none of the positive aspects we found resonated with aspects valued at the end of life found in a study by Steinhauser et al.: ‘pain and symptom management’, ‘clear decision making’, ‘preparation for death’ and ‘completion’ valued at the end of life [8]. This might be related to the fact that in our study we focused on the evaluation of the decision to start systemic treatment. For patients who start with treatment and their families, it might be more difficult to prepare for death than for people who do not start treatment. It might also be that they value the aspects at the end of life less."}