Psychiatric advance directives: challenges emerging from implementation and possible steps forward

A psychiatric advance directive (PAD) is a legal document stating a person’s treatment choices, usually combined with the appointment of a proxy decision-maker, for use when the person is going to lack capacity and become unable to faithfully communicate or make treatment decisions. PADs have been available in the US for more than three decades, although not robustly implemented in practice1, and have been adopted in some form in a number of other countries, including Australia, Belgium, Canada, Germany, Ireland, India, the Netherlands and the UK, although their legal and clinical context varies considerably across these countries. PADs can be viewed as an extremely useful device to communicate treatment preferences between the person with mental illness, a health care proxy, and health care providers. Many adults with serious mental illnesses are indeed able, based on previous experiences, to anticipate and competently plan ahead for a future mental health crisis. By giving advance consent to a needed hospital admission, the choice of effective treatment, and the appointment of a trusted person to serve as a health care proxy, the person may avoid the potentially traumatic loss of control that often comes with forced mental health treatment and confinement. Research has shown that adults with serious mental illnesses, when given assistance, can complete legally valid PADs, and that these documents help them obtain effective crisis treatment2. Clinicians and family members of persons with serious mental illness largely endorse PADs in concept3. According to a study of over 1,000 psychiatric outpatients in five US cities, there is still a large latent demand for PADs among persons with mental illness4. However, a Cochrane review of PADs failed to find strong evidence for effects on hospital admissions, treatment compliance, self-harm or number of arrests5, although the review included only two randomized controlled trials and failed to evaluate other types of interventional or observational studies. Challenges to PAD implementation identified by research include difficulty of completing PAD documents without assistance, inadequate infrastructure for timely retrieval of PAD information, clinicians’ lack of knowledge of PADs, tendency of clinicians to override lack of consent with involuntary commitment, and health systems’ lack of buy-in to implement PADs6. Further challenges include clinicians’ fear of legal liability from complying with PADs, fear that patients will use PADs to refuse appropriate treatment, fear that PADs will interfere with other clinical aspects of care, and issues with enforceability and revocability of PADs7. There is indeed considerable controversy about revocability, and particularly how binding the PAD should be when a patient, in the present, disagrees with the previously stated preferences. In jurisdictions where PADs are intended to be “self-binding”, they are deemed irrevocable when the patient is incapacitated, and thus they are effectively “Ulysses contracts” – referencing the Greek mythology wherein Ulysses commanded his crew to bind him to the mast of his ship and ignore the call of the sirens, even if he subsequently wished to follow the sirens. Ethical scholars have long debated the notion of overriding the current preferences of a patient in favor of previous stated preferences and, as a result, some PADs are designed not to be self-binding. Advocates for supported decision-making often disagree with the notion of overriding a patient’s current treatment preferences, even if he/she is incapacitated, in favor of assisting the patient in making his/her own decisions, even with difficulty8. PADs are essentially a mechanism for communication among key actors in psychiatric crisis treatment. They have been shown to work well in controlled clinical research settings, but often tend to fail in ordinary community-based services and crisis care. Several operational barriers must be addressed to enhance both the “transmitter” and “receiver” features of PADs. On the “transmitter” side, PADs require enough awareness of the illness to allow the patient to construct a future plan of care. The person must be able to decode a statutory form with often-dense legal language, complete witnessing and notarization, and file the PAD in an appropriate health care record. The completed PAD itself must be informative, coherent and succinct, in order to be helpful in often busy crisis settings. Trust serves a critical role in the PAD process: the person must be able to trust the legal authority of PADs, and trust the health care proxy to serve as an effective advocate during a crisis. Unfortunately, many health care proxies are not adequately prepared for their role, especially because this requires them to navigate an often confusing crisis care in order to effectively represent the preferences of the person in crisis. These “transmitter” features of PADs may be formidable barriers for people with serious mental illnesses. Fortunately, studies have shown that assistance with PAD completion can overcome these barriers. Research staff, clinicians, peer support specialists and family members can effectively assist in PAD completion9. Such support is also being developed via computer assistance, but this is yet untested. Unfortunately, models of training for health care proxies on maximizing the effectiveness of their role are sorely lacking, although critical to assuring PAD implementation. On the “receiver” side, free-standing websites for storage of advance care planning documents have been increasingly replaced by storage in electronic health records, although they are often not retrieved there, because there are relatively few PADs in the record and due to lack of clinicians’ familiarity with PADs. In the US, health care systems are legally required to comply with PADs, otherwise risking the loss of federal insurance reimbursement. However, lapses in compliance are typically investigated only following patient complaints, and systematic enforcement is lacking. Unlike the growing influence of public campaigns in the US to encourage attention to advance care planning in general health care, there are no analogous campaigns encouraging PAD creation or their general awareness. Legal activation of a PAD occurs when a physician or other authorized clinician documents the patient’s lack of capacity to make treatment decisions in the clinical record. Declaring a patient incapable, which puts into motion the PAD’s decision making authority, is often an informal clinical process, distinct from a legal adjudication of incompetency. Training is needed for clinicians on their crucial role in implementing PADs in times of crisis, and the potential benefit of incorporating PADs in clinical care. PADs have the promise of preserving a sense of autonomy and significantly improving crisis care for psychiatric patients. Although this is largely untested, they could also improve outcomes for persons with serious mental illnesses by optimizing their care, avoiding involuntary treatment, and even reducing the risk of criminal justice involvement. Increasing public awareness, advocacy by patients’ rights constituencies and regulatory leverage have brought end-of-life advance directives into routine use in several countries. Dissemination of PADs lags far behind, but use of the same levers could allow them to realize their promise.