Chapter 4 84 care decisions with the physician, because they were afraid this resulted in a fixed, documented decision. How you make up the balance might be situation dependent and varies over time. They expressed that ‘you push your limits’, and felt unable to decide now what they would like in the future: ‘how your condition is at that time and what happens’. This altogether made patients feel hesitant towards making decisions, and discussing the subject now. 3.3 Is a treatment worth it? The bottom layer in Fig. 2 is the patient’s consideration whether a treatment is worth it or not. This is the more practical perspective on care decisions that patients expressed. They mentioned care decisions is about the ‘balance between side effects and benefits of a treatment’, ‘to put the possibilities in context’, ‘to what extent you want to be treated and when you no longer want that’. It comprised thinking about whether something is worthwhile, and indicating boundaries if a treatment is not worthwhile. Several subthemes play a role in this balancing act, as will be described below. Quality of life Patients stated quality of life as an important factor in care decisions and the choice to limit treatments or not. Patients (or their relatives they use as an example) did not want ‘agony’, ‘a very heavy treatment process’ or to be treated when ‘it is hopeless’. They were afraid to become ‘a vegetable’ or were ‘reluctant to lose quality of life’. Life ‘should still be liveable’. They considered whether a treatment (and its side effects) is worse than the disease, ‘maybe live a little shorter but then you don’t have any misery because of the side effects’. Some stated to treat only if there is ‘hope’ for the future. Being informed Patients discussed that being informed of options and possibilities concerning care decisions is needed to be able to make decisions whether care is worthwhile or not. Currently they experienced a knowledge deficit, although the patient education did contribute to being informed. Especially the idea that care decisions include more than resuscitation and the background information given about other choices was mentioned as informative by many patients. Some stated being informed as a general benefit of the patient education, others mentioned specific positive consequences. For example, when one is
RkJQdWJsaXNoZXIy MTk4NDMw