Help and Hindrances to Completion of Psychiatric Advance Directives

In the 10 years prior to our initiative, which began in 2018 and is ongoing, only 16 mental health service users in the SDHB had medical files that contained an advance directive alert, and a majority of these signaled merely that an enduring power of attorney (i.e., a decision maker designated by a person when competent to make decisions regarding their health care if they later become incompetent) was in force, not that a separate PAD had been created by the service user. In 2019, approximately 5,000 people between the ages of 15 and 75 were registered as clients of the SDHB’s mental health services. In the 12 months since we commenced our initiative, 60 service users in the SDHB’s region have created PADs (4). This result suggests that about 1% of the target population of mental health service users created a PAD in 2019 as a result of our initiative. Completed PADs varied in the amount of information presented, but much of the content was aimed at providing information on consumers’ positive preferences, rather than on what they did not want to occur (6). Therefore, the completed PAD documents generally demonstrated consumers’ willingness to use their PADs to assist them in engaging in treatment, rather than to oppose treatment (2, 7).

Shields and colleagues (9) summarized factors that may hinder creation of PADs. We found that all barriers identified in Shields and colleagues’ meta-analysis, except for potential legal lability should a clinician override a PAD, were raised in the focus groups and online surveys that informed the development of our PAD process or in our discussions with service users, support workers, and clinicians. In addition, we noted further barriers, namely, absence of an established PAD process or PAD template and lack of suggestions or prompts to the service user regarding items to include in the PAD.

An extensive literature reports on barriers to completion of PADs (9). These barriers include lack of a defined process for creating a PAD (4), information imbalances and communication difficulties between service users and clinical staff (5, 7), and pessimism about the usefulness of the PAD process and the value of its likely outcomes (5, 10). Henderson et al. (11) reported little consensus between clinicians and consumers on where PADs should be completed and who should help facilitate the process. Although we anticipated that consumers would prefer assistance with completing the PAD from peer support workers, who are individuals with lived experience who engage with service users, rather than from clinicians, our work has shown that more consumers have completed their PADs with their caseworkers (primarily nurses) than with any other group.

Previous research has shown that even when psychiatric PADs are completed, without an accessible and secure central registry to allow for easy retrieval of the document in a crisis, the process was reported to be generally futile (12). Although the procedure we implemented allows completed PADs to be accessed electronically and alerts those accessing the service user’s electronic medical record of the PAD’s presence as soon as the file is opened, it remains possible that the document will not be fully accessed or followed by clinicians. Further research is needed to determine clinicians’ and service users’ experiences with PADs and the frequency with which PADs are referred to in practice.

Facilitators of PAD use at a health system level included having health care workers who acted as “champions” for the PAD process. In our case these were a senior nurse leader and key nurses on various community mental health teams (CMHTs). It was also important to organize outreach meetings. We held separate meetings for relevant health care professionals (e.g., CMHT members, general practitioners), support organizations (e.g. nongovernmental organizations offering day programs and outreach support for mental health service users), and service users and their families and supporters. Health board information technology support was essential for PADs to be uploaded into service users’ electronic medical files and for creating electronic alerts to identify the presence of a PAD when a patient’s file was accessed. Targeted education and training also helped provide health care professionals with the tools to support the creation and use of PADs, to address negative attitudes about PADs, and to assist service users in making decisions about future care. For service users, lack of knowledge about PADs and negative attitudes toward them could be managed through education. Having support from a trusted person to create a PAD was important to service users. Most of the PADs made were created in conjunction with a mental health nurse or other clinician, although the service users also considered peer support workers to be helpful.

In contrast to the extensive literature on barriers to PAD completion (9), the literature on facilitators of PAD completion is surprisingly small. Kemp et al. (12) identified the importance of having an organizational champion to manage institutional inertia or cultural difficulties in creating and implementing PADs. The findings from our current initiative validate the Kemp et al. findings; the use of PADs was supported at the policy level by a senior nurse leader and by a consumer researcher who participated in the education sessions and at the operational level by champions within the clinical teams. Kisely et al. (13) showed that staff training increased patient input into planning for future crisis management. Borschmann et al. (14) emphasized the importance of psychoeducation to manage negative or pessimistic attitudes about PADs among service users and health care professionals and reported improved clinical relationships between service users and providers as well as improved feelings of control by service users. Bee et al. (5) highlighted the importance of health professionals’ improvement in fundamental listening and engagement skills when working with service users in mental health care planning and promoting shared decision making. Similarly, we found that clinicians responded well to training workshops that introduced the PAD instrument and presented the research behind its development. The importance of supporting consumers in completing PADs has been identified in several publications (8, 11, 15); however, disagreement remains about whether input from clinicians or patient advocates has led to more detailed PADs. Although more than half of the individuals in our sample completed their PAD in conjunction with a clinician, many others completed the document with the help of a peer support worker (4). The most important factor appeared to be that individuals creating PADs do so with the help of someone whom they trust and with whom they feel comfortable.

We have presented a number of factors that may facilitate completion of PADs by mental health service users. If, as seems likely, PADs are included in revised mental health legislation in New Zealand, their use will become a national priority. Our observations may help overcome barriers to completion of PADs and assist with rates of PAD completion.