Advance Statements for Borderline Personality Disorder: A Qualitative Study of Future Crisis Treatment Preferences

This qualitative study formed part of a randomized controlled trial of joint crisis plans for people with borderline personality disorder (22). Participants in the trial were randomly assigned either to receive treatment as usual or to develop a joint crisis plan plus receive treatment as usual. They were assessed six months later on a range of variables, of which the primary outcome measure was self-harming behavior. Despite finding no evidence of clinical efficacy of the intervention, the trial showed that joint crisis plans were viewed very favorably by participants, with more than 70% reporting that they had used them in a crisis and 85% stating that they would recommend them to a peer (22).

Forty-one of the 46 participants (89%) randomly assigned to the intervention arm created joint crisis plans, and their demographic data are shown in Table 1. A majority of participants were female, white, single, and in their thirties.

To our knowledge, this is the first study to rigorously examine the advance statements of a sample of community-dwelling adults with borderline personality disorder. In their plans, participants made clear and considered choices to include useful information both for themselves and for health care professionals with whom they might interact during future crises. Participants reported that during previous crises they had failed to meet their basic self-care requirements, including eating, drinking and bathing. Subsequently, many participants chose to include in their advance statement a reminder to address these basic needs during future crises, suggesting that thoughtfully constructed written advance statements can provide helpful, immediate reminders during an acute crisis. Key themes included the desire to be treated with dignity and respect and to receive support from clinicians. Other themes related to preferences for specific treatment refusals during crises, including particular types of psychotropic medication and involuntary treatment.

Participants were divided on the issue of connecting with others while in a crisis. For many, having the opportunity to connect with others was seen as both life affirming and vital, whereas many others described it as unhelpful, instead preferring to be left alone during crises. It is also possible that the same service user may wish to be alone during one crisis, yet with others during a different crisis. This divergence highlights the need for clinicians to actively discuss such issues with patients when reviewing crisis plans. The National Institute for Clinical Excellence (NICE) guideline on the management of borderline personality disorder (6) recommends that regular reviews of care plans be conducted with the service user and his or her family members or caregivers if possible and that service user autonomy be promoted at all times. For persons seeking to be left alone during a crisis, being “forced” into being with others is also potentially traumatic and can increase underlying feelings of powerlessness that often play out in interactions with clinicians (29).

Much of the content of the advance statements was related to previous unsatisfactory interactions that patients had experienced with health care professionals and an understandable wish to avoid such negative interactions in the future. These concerns indicate staff training issues, with research showing that negative clinician attitudes toward this population can be improved as a result of targeted clinical education about borderline personality disorder (30–32). A common theme in participants’ joint crisis plan was that they wanted clinicians to listen to them, to treat them with dignity and respect, and to actively respond to their needs. As such, we think that staff training initiatives should highlight the fact that people with borderline personality disorder are able to make considered choices around planning their future treatment and should be treated as equal partners in planning meetings.

Treatment preferences regarding medication and involuntary hospital treatment were the two most common treatment refusals. The NICE guideline (6) states that although medication is commonly started when a person with borderline personality disorder presents in crisis, there is no evidence for the use of any specific drug or combination of drugs in crisis management. In addition, there are currently no medications licensed in the United Kingdom for the treatment of borderline personality disorder. The choices expressed by participants regarding medication type therefore appear to be ones that clinicians should not have difficulty following. In this regard, our findings are similar to research into the content of psychiatric advance directives produced in the United States by people with severe mental illnesses (33,34).

At the request of participants, the advance statements were distributed to a range of health and statutory representatives involved in their care. More than 90% requested that their primary care physician be provided with a copy of their crisis plan. People with borderline personality disorder are high consumers of primary health care services (35), with primary care physicians often being the first contact in a crisis. As such, advance statements that can be shared with primary care physicians may be particularly valuable. Goals of crisis interventions for people with borderline personality disorder typically include returning people to their precrisis level of functioning and mobilizing both internal and external resources (36). These were, for the most part, reflected by our participants and mirror the goals of the recovery orientation, which is central to mental health policy in the 21st century throughout the Western world (37,38). Participants included clear statements in their joint crisis plans relating to a desire to recover from the crisis and to establish a more optimal level of social functioning. This finding challenges misconceptions held by many clinicians that people with borderline personality disorder either consistently make self-destructive life choices (39) or lack the requisite capacity to make sensible life choices (7,40,41). We think this highlights the fallacy whereby clinicians may make unfavorable assumptions about the level of functioning of people with borderline personality disorder during their daily lives based on their presentation during a crisis. Our findings also demonstrate that the same issues of dignity, respect, and autonomy identified in global surveys of discrimination among people with severe mental illness (42,43) are important to people with borderline personality disorder.

Our findings have important implications for clinicians involved in the daily care of people with borderline personality disorder, at a time in the evolution of health care services when shared decision making (44) is becoming the norm rather than the exception. Clinicians may wish to use joint crisis plans in routine practice as a method of discussing, in considerable detail, the differing risk factors, protective factors, and treatment preferences of the individual service user. One of the strengths of joint crisis plans is that they are written in the service user’s own words and are therefore largely free of the medical jargon seen in patient records and earlier forms of crisis plan.

Our findings need to be considered in view of some limitations. First, most participants in our sample were female, and what impact, if any, this may have had on the data collected remains unclear. Nevertheless, the profile of our patients was typical of that seen in clinical practice. Second, we were unable to verify our coding framework with participants (that is, to conduct a respondent validation exercise); however, our research team included a senior service user researcher who was closely involved in the analytic process. Third, all joint crisis plans were created in the presence of participants’ care coordinators, and this may have affected the statements made by participants. Against these points, however, the content of the joint crisis plans suggests that participants felt comfortable to discuss previous experiences when clinicians had been neither helpful nor respectful. Our study also had strengths. We used a randomized sample of community-dwelling people with borderline personality disorder that was clearly defined with DSM-IV criteria. These sample attributes increased the external validity of our findings. In addition, two experienced researchers (who achieved good interrater reliability) were involved in coding the qualitative data, which were then independently checked by other members of the research team.

Our study highlights several important issues. First, the advance statements made by the participants mostly expressed a clear desire to recover from the crisis. Second, practitioner interactions that preserve patients’ dignity, respect, and autonomy are as critically important to people with borderline personality disorder as they are to people with a severe mental illness, and to patients in general. Third, the variation observed in the treatment preferences of participants in our study underscores the importance of developing individually tailored advance statements and involving service users with borderline personality disorder in collaborative therapeutic relationships. Participants in our study wanted to be listened to, to be treated respectfully, and to be actively involved in decision making concerning their care. Our findings highlight several clear domains in which people with borderline personality disorder can be more involved in planning their future care during crises and important lessons for practitioners and policy makers regarding future care planning for this population.

Dr. Borschmann was funded by Medical Research Council trial platform grant 85397 (Dr. Moran, chief investigator). Dr. Trevillion is supported by grant RP-PG-0108-10084 from the English National Institute for Health Research Programme Grants for Applied Research. The trial is registered in the International Standard Randomized Controlled Trial Registry as trial ISRCTN12440268.

The authors report no competing interests.