Abstract
Background: The idea that people with severe mental illness should be able to plan in advance for periods of illness as a means of enhancing autonomy has been long debated and is increasingly being enshrined in codes of practice and mental health legislation. It has been argued that the ethical imperative for this is especially pronounced in bipolar (BP), a condition in which sufferers often experience episodic crises interspersed with periods of wellness. However, there is a paucity of published research investigating experiences of advance decision making (ADM) in people with BP or their attitudes towards it. Methods: An online survey of BPUK’s mailing list was conducted. 932 people with BP completed the survey (response rate 5.61%). Descriptive statistics and regression analysis were conducted to compare experience of with attitudes towards ADM and variables associated with interest in ADM. Results: A majority indicated a desire to plan care in advance of losing capacity (88%) but most had not done so (64%). High numbers of respondents expressed a wish to request as well as refuse treatment and most wanted to collaborate with psychiatrists, including on issues around self-binding. The most frequent motivation to utilise ADM was a desire to be more involved in mental health decisions. Interest in self-binding was associated with experience of compulsory treatment and trust in mental health services. Interest in refusals of all medication was associated with younger age and lack of trust in mental health services. Interest in ADM in general was associated with younger age but not educational level, ethnicity or gender. Conclusions: This study demonstrates an appetite for ADM amongst people with bipolar that is independent of educational status and ethnicity. As states reform their mental health laws, attention needs to be given to the distinctive attitudes toward ADM amongst people with bipolar.
Highlights
Bipolar (BP) is a common and severe mental illness[1]
Sample demographics and disease characteristics A total of 932 people with BP completed the survey and met the inclusion criteria
It has demonstrated that advance decision making (ADM) is uncommonly practised despite substantial interest
Summary
Bipolar (BP) is a common and severe mental illness[1]. It has a worldwide prevalence of approximately 1% and is associated with 10–20 years shorter life expectancy[2,3]. A defining feature of BP is its fluctuating course, characterised by marked and prolonged changes in mood and energy levels interspersed between periods of wellness[1]. These episodic “crises”, which are described as either manic, depressive or mixed depending on the predominant polarity of affect, occur relatively frequently. Episodes often lead to the loss of capacity to make such treatment decisions (hereby referred to as capacity) and individuals may uncharacteristically refuse treatment and disengage with services when unwell[7]
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