Of course, advance directives also carry risks. But these risks can be minimized. Researchers describe how to do this in a series of high-profile publications.
While advance directives are commonplace for situations involving physical disabilities, they remain controversial for people with mental disabilities. In many countries, including Germany, so-called Odysseus directives do not yet exist. Researchers from Ruhr University Bochum, King’s College London, Charité Berlin, and Vrije Universiteit Amsterdam examined the opportunities and risks of Odysseus directives as part of the SALUS project and concluded that the benefits clearly outweigh the risks. Following a comprehensive literature review of the pros and cons, the team surveyed individuals with mental health conditions, their relatives, and medical staff regarding the opportunities and risks and developed recommendations for implementing the directives. The results have been published in three articles in “The Lancet Psychiatry,” “European Psychiatry,” and “World Psychiatry.” The most recent publication appeared on September 12, 2023.
Establishing a preference for future psychiatric treatment
The barriers to involuntary psychiatric hospitalization or treatment are high; there must be a risk of significant harm to health. “Often, however, social or financial harm occurs beforehand, which patients later regret,” explains Matthé Scholten of the Bochum Institute for Ethics and History of Medicine. For example, people with bipolar disorder often engage in risky behavior during manic episodes, such as spending large amounts of money.
In an Odysseus directive, individuals who are capable of giving consent can specify that they wish to be admitted to a psychiatric facility under certain circumstances—for example, if their partner or a friend notices a previously defined behavior. In the directive, individuals can also specify which treatments they do and do not wish to receive.
Opportunities and Risks of Odysseus Orders
“Odysseus directives offer three key benefits,” summarizes Matthé Scholten. “They give those affected greater autonomy, can prevent financial and social harm, and can also improve the therapeutic relationship and the relationship with family members. Overall, Odysseus directives give those affected control over their lives and their treatment.”
One risk that is frequently cited, however, is the danger of family members or doctors exerting undue influence when the directive is being drafted. While a doctor might consider medication to be the best course of treatment, a patient might refuse it due to severe side effects. “Ultimately, however, the directive must reflect only the will of the person concerned. We therefore propose that it be drafted in the presence of a neutral party,” Scholten outlines a possible solution.
There are also obstacles to practical implementation; for example, in the event of a psychiatric crisis, the directive might be lost, meaning that treatment would not be provided in accordance with the individual’s wishes. The researchers therefore recommend using a digital infrastructure that complies with data protection regulations.
A Comparison of Three Countries
In one of their studies, they surveyed stakeholders in Germany, the Netherlands, and England regarding Odysseus directives. Of these three countries, psychiatric directives are currently in use only in the Netherlands. In Germany, the legal framework for this would first need to be established.
The results surprised the researchers: “Although the healthcare systems in the three countries are very different, there was significant overlap in the results,” says Scholten. “According to the respondents, the benefits outweigh the drawbacks.”
Adequate resources are crucial
It is crucial to ensure that sufficient resources are available for working with Odysseus directives. It is not just the drafting of the document that must be done carefully. “After a course of treatment, the patient, their family, and the doctor should sit down together and assess whether the therapy went as the patient had hoped,” explains Matthé Scholten. “If not, future treatment should be approached differently or, if the patient wishes, the advance directive should be amended accordingly.”
The researchers believe that the time invested in this approach is well worth it. “If patients are admitted at the onset of a crisis, they are likely to stay in the hospital for a shorter period than if we wait until a major crisis occurs,” said the Bochum-based scientist.
Funding
This work was supported by the German Federal Ministry of Education and Research (01GP1792) and the Wellcome Trust (203376).
Original publications
- Lucy Stephenson, Astrid Gieselmann, Tania Gergel, Gareth Owen, Jakov Gather, Matthé Scholten: Self-binding directives in psychiatric practice: a systematic review of reasons, in: The Lancet Psychiatry, 2023, DOI: 10.1016/S2215-0366(23)00221-3
- Matthé Scholten et al.: Implementation of self- binding directives: recommendations based on expert consensus and input by stakeholders in three European countries, in: World Psychiatry, 2023, DOI: 10.1002/wps.21095
- Matthé Scholten et al.: Opportunities and challenges of self-binding directives: A comparison of empirical research with stakeholders in three European countries, in European Psychiatry, 2023, DOI: 10.1192/j.eurpsy.2023.2421
Press Contact
Dr. Matthé Scholten
Institute for Ethics and History of Medicine
Ruhr University Bochum
Phone: +49 234 32 28628
Email: matthe.scholten@ruhr-uni-bochum.de