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Advance Statements: Survey of Patients' Views and Understanding

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Advance Statements: Survey of Patients' Views and Understanding Foy et al Advance statements: patients’ views and understanding Psychiatric Bulletin (2007), 31, 339^341. doi:10.1192/pb.bp.106.013599 JANE FOY, ALISON MACRAE, ALEX THOM AND AJAY MACHAROUTHU original Advance statements: survey of patients’ views papers and understanding AIMS AND METHOD statements prior to the survey (5 of considerdrawingupanadvance A survey of patients was undertaken 58, 8.6%). After issuing information statement. to determine their knowledge and about advance statements, aware- CLINICAL IMPLICATIONS understanding of advance state- ness and understanding increased A lack of knowledge among patients ments (a new addition to Scottish significantly among those who about the existence of advance state- mental health legislation introduced completed the study, with 59% mentsishighlighted.Afterabrief with the Mental Health (Care and (16 of 27) now understanding the intervention, awareness, under- Treatment) (Scotland) Act 2003). Few concept.The types of information standing and interest increased signif- patientshavetakenupthisfacility that patients wished to be docu- icantly, suggesting that poor uptake and this study attempts to identify mented in an advance statement could be because of lack of awareness. potential explanations. fell into two broad groups: Most participants would consult treatment preferences and state- mental health professionals when RESULTS ments regarding loss of control and drawingupanadvancestatement, A minority of the initial 58 autonomy. Out of 27 participants thereforewehavearesponsibilityto participants had heard of advance 19 (70%) stated they would now be fully informed about the process. The Mental Health (Care and Treatment) (Scotland) Act Mental Welfare Commission is not routinely informed 2003 incorporated a number of provisions relating to the when an advance statement is made. principle of patient participation, including named Psychiatric services have a duty to ensure, as far as is persons, access to advocacy, and advance statements. practicable, that patients are aware of their rights. By the The majority of the Act’s provisions were implemented on time of our study advance statements had been in place 5 October 2005, but advance statements and named for 14 months and we wanted to identify levels of persons were introduced a year earlier. awareness, understanding and opinions both before and An advance statement is: after participants were given information about the ‘awritten statement setting out how they [the patient] would process. wish to be treated, or wish not to be treated, for a mental disorder should their ability to make decisions about treat- ment for their mental disorder become significantly impaired as a result of their mental disorder’. Method The value of advance statements has been debated. Participants were recruited from the Lithium Clinic at Papageorgiou et al (2002) carried out a randomised Dykebar Hospital, Paisley over a 6-month period from controlled trial looking at the effect advance statements December 2005. This gave us a sample with severe and had on future hospitalisation and found no difference in enduring mental illness but with good insight and func- the rates of either compulsory or voluntary readmissions, tioning between episodes. Many had been hospitalised the number of days spent in hospital or satisfaction with previously, a significant number on an involuntary basis. psychiatric services. However, Henderson et al (2004) Of those who attend the Lithium Clinic 60% have a conducted a randomised controlled trial of joint crises diagnosis of bipolar affective disorder, 25% recurrent plans (a form of advance agreement) and found reduced depressive disorder and 15% other diagnoses, including use of the Mental Health Act 1983 and reduced admis- affective psychosis and personality disorder. Consecutive sions in the intervention group. Mental health charities clinic attenders were asked to participate in the study. such as Mind (http://www.mind.org.uk) have Participants were given written information explaining the campaigned for the introduction of legally enforceable format, purpose and lack of obligation to take part. advance statements enabling patients to plan their treat- Questionnaires were completed anonymously. ment with the aim of enhancing autonomy and engage- Two questionnaires were given to patients. The first ment with services. asked the following questions: The uptake of the advance statement facility appears to have been low thus far. The Mental Welfare . have you heard of advance statements? Commission (2006) Quarterly Statistics (January to . if so, what do you understand them to be? March 2006) have records of only 42 advance state- . what might you like to include in an advance state- ments. This may be a conservative figure given that the ment? 339 Foy et al Advance statements: patients’ views and understanding . if you wanted to find out more about advance state- Table 1. Sources that participants would use to obtain ments or make an advance statement what sources of information regarding advance statements (n=58) information would you use and whom would you talk original Responses, papers to? Source n (%) After completion, a copy of the booklet A Guide to Advance Statements (Scottish Executive, 2005) was Psychiatrist/community mental health 37 (64) issued. At their next clinic appointment, usually within 3 team Internet 12 (20) months, participants were given the second question- General practitioner 10 (17) naire which asked the following questions: Patient groups, voluntary organisations 6 (10) . did you read the information provided about advance Written material, library 6 (10) statements? Family/partner 2 (3) . if no, was there a specific reason for not doing so? Legal advice 2 (3) . if you did read it, what do you now understand ad- Don’t know 5 (9) vance statements to be? . would you now consider having an advance state- ment? only 27 (46%) had actually read the information provided. if no, is there any particular reason for this? The main reasons for non-completion of the second . if you would consider having an advance statement, questionnaire were non-attendance at clinic, admission to what information would you want to include in it? hospital, declined and failure to return forms. The main . who do you plan to speak to about having it drawnup? reason for not reading the booklet was forgetting to do so. Results What do you now understand advance statements A total of 108 patients attended the Lithium Clinic over a to be? 6-month period (December 2005 to June 2006). Fifty- It appeared that 16 out of 27 participants (59%) had a eight (53.7%) agreed to participate and completed the definite understanding and 41% (11 of 27) did not grasp first questionnaire. Of this sample 62% were female and the concept fully or gave too vague a response, such as: 38% male and the median age was 55 years (range 35- . ‘future requirements in improvements of treatment’ 79, interquartile range 49-63). The gender distribution . ‘writing a statement regarding going into hospital’ was in keeping with the original clinic population but the . ‘what your mental state is when normal to act as a age distribution slightly younger (median 59 years, range reference for when you are ill’. 35-86, interquartile range 50-67). Answers which demonstrated an adequate under- Questionnaire1 standing included: . ‘an opportunity (enforcedby law) to make your wishes Only 5 of the 58 who participated (8.6%) had heard of known regarding your treatment’ advance statements. Of those, only 2 appeared to have a . ‘written statement made while you are well which in- reasonable understanding of the concept, the responses dicates which treatment you would/would not like being: were you ever to become very unwell in the future’ . ‘these are statements that the patient makes when . ‘in the event of becoming ill and admitted to entering hospital about the treatment they will re- hospital - making your treatment wishes known in ceive, e.g. if someone does not wish to receive elec- advance, e.g. no ECT’ troconvulsive therapy (ECT) treatment’ . ‘a guide to help my treatment when I am not so well . ‘making clear in writing (legal statement) how one and my mind may be not as balanced in making deci- wants to be treated regarding medication, hospital sions, e.g. mania influencing buying what you cannot care etc.’ afford’ . ‘not sure’ . ‘a statement giving my wishes for treatment if I . ‘making arrangements to have someone of your become too ill to make decisions’. choice deal with youraffairs should youbecome ill, this is done before you are ill’ . ‘patients giving information about their illnesses’. Would you now consider having an advance statement? Of those who had read the booklet, 19 (70%) said they With regards to sources patients would use to would now consider drawing up an advance statement, 6 obtain information about advance statements a variety of (22%) would not and 2 (7%) were unsure. answers were given, many suggesting more than one The reasons given for not drawing up an advance source (Table 1). statement included: . unable to think of anything to put in an advance Questionnaire 2 statement Out of the 58 participants who completed the first . it can be overridden by medical staff questionnaire 34 also completed part 2 of the survey but . put off by the legal aspects 340 Foy et al Advance statements: patients’ views and understanding Table 2. Information participants would include in an advance Electroconvulsive therapy was the most commonly statement
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