People with dementia have a right to self-determination. But determining whether they are capable of giving consent can be a challenge. To support clinicians in making these assessments in their daily practice, Dr. Matthé Scholten of Ruhr University Bochum and Prof. Dr. Julia Haberstroh of the University of Siegen, together with a team of authors, have compiled detailed recommendations for action along with practical tips. In their book “Decision-Making Assistance and Capacity to Consent in Dementia,” they describe in detail the criteria and conditions under which the capacity to consent of people with dementia can be assessed, and provide guidance for the process. The book was published by Kohlhammer-Verlag in May 2024.
„Das Recht auf Selbstbestimmung ist sowohl als zentraler Kerngedanke der Allgemeinen Erklärung der Menschenrechte als auch in Artikel 2 des Grundgesetzes verankert. Dieses Recht ist für Menschen mit Demenz in Gefahr, missachtet zu werden“, unterstreicht Julia Haberstroh die Relevanz.
No uniform criteria have been established so far
In Germany, any medical procedure requires informed consent, and this can only be given if the patient is capable of giving consent. “Whether that is the case is currently often assessed based on gut feeling,” says Matthé Scholten of the Bochum Institute for Medical Ethics and History of Medicine. “There are studies showing that doctors sometimes make incorrect assumptions and thus misjudge a person’s capacity to consent.” For example, some doctors assume that patients who have a legal guardian are not capable of giving consent. However, this must be assessed on a case-by-case basis. Furthermore, there are currently no uniform criteria for this assessment. “Often, the outcome depends on who is conducting the assessment,” says Scholten.
Step-by-step instructions
In the book, Haberstroh and Scholten describe in detail when assessments of capacity to consent should take place, what information is required for such assessments, and how they should be prepared. In addition, the book includes, for the first time, German translations of two assessment tools developed by Thomas Grisso and Paul Appelbaum—MacCAT-T and MacCAT-CR—which are well-established in English-speaking countries. They are based on four criteria: understanding of information, understanding of the illness and treatment, judgment, and the ability to make and communicate a decision.
The authors provide a list of questions that can be used to assess the criteria. They also offer examples to help clinicians apply the criteria.
“A discussion to assess a patient’s capacity to consent takes some time, but we have to provide information to patients anyway,” explains Matthé Scholten. Medical counseling should not be a monologue, but a conversation. Doctors can regularly ask their patients whether they have understood the information and ask them to repeat it in their own words. “We know that it’s a challenge to fit this into the daily routine of a hospital, but every person has a right to it,” says Scholten.
Decision Support
Furthermore, the book offers tips on creating suitable conditions that can improve the quality of patient education and assessment. “Effective informed consent requires not only that the patient be capable of giving consent, but also that they receive adequate information. Information is considered adequate when it empowers the patient as much as possible to make a self-determined decision,” explains Julia Haberstroh. Some doctors tend to speak quickly and use technical terms. In addition, conversations sometimes take place in rooms with background noise. In such cases, it can help to use clear language and conduct the conversation in a room free of background noise.
“When a doctor concludes that a person is incapable of giving informed consent, this should not be seen as the end of the process, but rather as the starting point,” says Julia Haberstroh. “This is where the process of informed consent, supported by decision-making assistance, can begin: Where did the person encounter difficulties? Where did they have strengths? How can those strengths be leveraged to compensate for the difficulties? Our book offers practical tips on how to enable patients to give self-determined consent.”
Original publications
- Matthé Scholten, Julia Haberstroh: Decision-Making Support and Capacity to Consent in Dementia, W. Kohlhammer Publishers, Stuttgart 2024, 146 pages, ISBN: 9783170387164
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
Prof. Dr. Julia Haberstroh
Psychological Research on Aging
Faculty of Life Sciences
Phone: +49 271 740 4053
Email: julia.haberstroh@uni-siegen.de