Motivations, aims and communication around advance directives A mixed-methods study into the perspective of their owners and the influence of a current illness

AbstractObjectiveWhat are motivations of owners of an advance directive (AD) to draft an AD, what do they aim for with their AD and do they communicate about their AD?MethodsWritten questionnaires were sent to a cohort of people owning different types of ADs (n=5768). A purposive sample of people suffering from an illness was selected from the cohort for an in-depth interview (n=29).ResultsAbout half of our population had no direct motivation to draft their AD. Most mentioned motivation for the other half was an illness of a family member or friend. Many different and specific aims for drafting an AD were mentioned. An often mentioned more general aim in people with different ADs was to prevent unnecessary lengthening of life or treatment (14–16%). Most respondents communicated about having an AD with close-ones (63–88%) and with their GP (65–79%). In the interviews people gave vivid examples of experiences of what they hoped to prevent at the end of life. Some mentioned difficulties foreseeing the future and gave examples of response shift.ConclusionADs can give directions to caregivers about what people want at the end of life.Practice implicationsADs have to be discussed in detail by their owners and caregivers, since owners often have specific aims with their AD

Identifying patients who could benefit from palliative care by making use of the general practice information system: the Surprise Question versus the SPICT

OBJECTIVE: We compared the performance of two tools to help general practitioners (GPs) identify patients in need of palliative care: the Surprise Question (SQ) and the Supportive and Palliative Care Indicators Tool (SPICT). METHODS: Prospective cohort study in two general practices in the Netherlands with a size of 3640 patients. At the start of the study the GPs selected patients by heart using the SQ. The SPICT was translated into a digital search in electronic patient records. The GPs then selected patients from the list thus created. Afterwards the GPs were interviewed about their experiences. The following year a record was kept of all the patients deceased in both practices. We analysed the characteristics of the patients selected and the deceased. We calculated the performance characteristics concerning predicting 1-year mortality. RESULTS: The sensitivity of the SQ was 50%, of the SPICT 57%; the specificity 99% and 98%. When analysing the deceased (n = 36), 10 died relatively suddenly and arguably could not be identified. Leaving out these 10, the sensitivity of the SQ became 69%, of the SPICT 81%. The GPs found the performance of the digital search quite time consuming. CONCLUSION: The SPICT seems to be better in identifying patients in need of palliative care than the SQ. It is also more time consuming than the SQ. However, as the digital search can be performed more easily after it has been done for the first time, initial investments can repay themselves

Preferences on forgoing end-of-life treatment are stable over time with people owning an advance directive; A cohort study

Objective: We studied if preferences about end-of-life care of people having an advance directive (AD) stay stable over time and if (in) stability is associated with health status. Methods: A longitudinal cohort study with a population owning different types of ADs (n = 4638). Respondents repeatedly answered questionnaires between 2005−2010. Using hypothetical scenarios about advanced cancer and dementia we assessed preferences for continuing or forgoing resuscitation, mechanical ventilation, artificial nutrition and antibiotics. Using generalized estimated equations we analysed whether life-events and quality of life influenced changes in preferences. Results: The proportion of respondents with stable preferences ranged from 67 to 98 %. Preferences were most stable concerning resuscitation and least stable concerning mechanical ventilation. In only a few instances we found life-events or a change in quality of life could both increase or decrease odds to change preferences. Conclusion: Preferences concerning continuing or forgoing treatment at the end of life are stable for a majority of people with ADs, which supports their validity. Practice implications: The value of on-going communication about preferences between patients and caregivers is confirmed by our findings concerning differences in stability between treatments and the association between stability of preferences and life-events or quality of life