Intricate decision making: ambivalences and barriers when fulfilling an advance directive

Abstract

BackgroundDespite a recent statutory ruling stating the binding nature of advance directives (ADs), only a minority of the population has signed one. Yet, a majority deem it of utmost importance to ensure their wishes are followed through in case they are no longer able to decide. The reasons for this discrepancy have not yet been investigated sufficiently.Patients and methodsThis article is based on a survey of patients using a well-established structured questionnaire. First, patients were asked about their attitudes with respect to six therapeutic options at the end of life: intravenous fluids, artificial feeding, antibiotics, analgesia, chemotherapy/dialysis, and artificial ventilation; and second, they were asked about the negative effects related to the idea of ADs surveying their apprehensions: coercion to fulfill an AD, dictatorial reading of what had been laid down, and abuse of ADs.ResultsA total of 1,260 interviewees completed the questionnaires. A significant percentage of interviewees were indecisive with respect to therapeutic options, ranging from 25% (analgesia) to 45% (artificial feeding). There was no connection to health status. Apprehensions about unwanted effects of ADs were widespread, at 51%, 35%, and 43% for coercion, dictatorial reading, and abuse, respectively.ConclusionA significant percentage of interviewees were unable to anticipate decisions about treatment options at the end of life. Apprehensions about negative adverse effects of ADs are widespread.

Barriers, enablers and initiatives for uptake of advance care planning in general practice: a systematic review and critical interpretive synthesis

“…When considering barriers to ACP in general practice from an individual perspective, there were very few general practice studies directly involving patients 14 39–43. A few studies described patient experience by proxy through opinions obtained from GPs.…”

“…Further, an identified lack of trust in the health system with reported concern that an ACP would in some way limit care or negatively impact the individual was reported 40. The concepts of poor literacy,45 and poor health literacy,46 as contributing factors were also noted.…”

“…Practice nurses also reported ACP as beneficial to patients and understood a potential role for nurses in this context 14 60. Positive attitudes have also been reported in the community with one study describing a majority of patients and healthy people considering ACP as ‘meaningful and important’ (p1583) 40…”

Survey on German Palliative Care Specialists’ Experiences with Advance Directives

“…This is particularly remarkable since the mean age of the respondents was 86 years, an age when death is statistically quite near [ 15 ]. However, there are barriers against completing an AD resulting in a limited distribution among patients and the population as indicated by a recent study [ 16 ].…”

Psychometric Testing of the Korean Version of the Attitudes toward the Advance Directives in Low-Income Chronically Ill Older Adults

“…One of the barriers to the limited access to or suboptimal use of ADs could be negative attitudes toward ADs, which may lead to reluctance to engage in discussion about disease progression and/or decisions for end-of-life care [29,30]. Thus, exploring people's attitudes toward such care using reliable and valid measures could be helpful to facilitate and increase earlier and extended use of ADs in clinical and nonclinical contexts.…”