CULTURAL DIVERSITY IN MEDICAL LAW
2024-2028

How can the healthcare system adequately address the specific needs of patients from different cultural backgrounds?
This question is being explored in a project funded by the Swiss National Science Foundation (SNSF) and led by the Universities of Lucerne and Basel.

Swiss medical and health law is based on an image of patients as autonomous and rational actors. After receiving adequate information—essentially as equals to the physician—they are expected to make an independent decision about undergoing a medical procedure. This decision should be made based on a critical assessment of the medical diagnosis and a careful weighing of the benefits against the risks and burdens of treatment or non-treatment. Similarly, patients may proactively determine medical measures to be taken or omitted in the event that they become incapable of judgment in the future.

A New Challenge
However, the image of the patient underlying medical and health law often does not reflect reality. The new research project—led by Prof. Dr. Regina E. Aebi-Müller, Prof. Dr. Bernhard Rütsche, and Prof. Dr. Bijan Fateh-Moghadam (University of Basel)—focuses on patients and their relatives whose values and needs in medical care differ from the rationality assumptions implicitly presupposed by our legal system. Such values and needs—often seen as "irrational" or "unreasonable"—can be shaped by traditions and worldviews from their societies of origin, religious affiliation, or other sociocultural influences. Examples include reservations about certain medical products, metaphysical beliefs about illness and death, or decision-making responsibilities that lie within the family. The healthcare system faces these issues on a daily basis—and increasingly so due to global migration and the segmentation of values and lifestyles. Patients and their legal representatives who do not conform to the legal assumptions of rational decision-making are often particularly vulnerable and at risk of discrimination.

Building on this, the research project—comprising three coordinated subprojects from civil, public, and criminal law perspectives—examines whether current medical and health law adequately addresses the diversity of socioculturally influenced values and behaviors, and to what extent improvements might be needed in medical practice or through legal reforms.

Project Title
Culturally Sensitive Medical Law – Legal Challenges in Dealing with Sociocultural Diversity in Healthcare

Project Leads
Prof. Dr. Regina E. Aebi-Müller, Faculty of Law, University of Lucerne
Prof. Dr. Bernhard Rütsche, Faculty of Law, University of Lucerne
Prof. Dr. Bijan Fateh-Moghadam, Faculty of Law, University of Basel

In families with a child with a disability, there is often a need—due to various reasons, including those rooted in social assistance and social insurance law—not to leave succession and family asset planning to the default legal rules, but instead to deliberately plan the inheritance of the parents. Swiss law offers a range of planning instruments for this purpose. This research project aims to examine the specific possibilities that these planning instruments provide de lege lata (under current law) and to identify where limitations may exist. Where the legal framework does not sufficiently accommodate legitimate concerns, the project also explores potential solutions de lege ferenda (possible future legal reforms). In addition, the project discusses legal policy issues linked to the topic.

At its core, the question of disability-sensitive estate planning and its legal limitations reflects a broader issue: who should bear the financial risk of a disability? Are the parents (and thus the entire family wealth) primarily responsible, or is this a responsibility of the welfare state, thereby justifying a broader (indirect) distribution of costs across society? While this discussion has progressed much further in Germany, the focus of the study is on the legal situation in Switzerland.

The research project was conducted by MLaw Janine Camenzind. It concluded in 2021. In 2024, the doctoral thesis titled “Estate Planning in Families with Children with Disabilities” was published. Several accompanying publications completed the project.

2014-2017

Self-determination at the end of life in the Swiss legal framework: a critical analysis of the legal duty of having to decide for oneself.

This research project deals with the issue of the limits of the right of consent of parents with legal custody, and the state’s obligation to provide welfare services in relation to health matters for minors who are unable to give consent.
2012-2015

For many medical treatment options one can no longer refer to the universal and objective "best interests" of the child that the parents of a minor who is unable to give consent must accept, with the intervention of authorities if required. The objective "best interests" of the child are by and large a fiction that no longer tallies with the complex medical reality. Should health impairment necessarily be an accepted part of a child’s life? Do preventive vaccinations unnaturally hinder the development of the body’s defences? Should aesthetic limitations be labelled as natural beauty? Or is the opposite true: should "good parents" use all available time and financial resources to exhaust the medical possibilities? These are difficult questions, with only some peripheral clarity, such as in the presence of life-threatening diseases, and when straightforward medical treatment options are available. There remain substantial grey areas in which it is unclear how much leeway the government should grant parents, and in which official intervention is necessary, irrespective of the ideological or social basis.

Depending on the initial situation, it can be problematic when authorities make decisions about carrying out medical treatment. This also applies to general state health care measures for children that may conflict with their parents’ legal custody (e.g. forced vaccinations, school health and dental examinations, and regulations etc.). There are also many issues that previous legal research has barely touched on, such as questions related to the admissibility of state intervention for specific individuals in the form of child protection measures. Another unanswered question relates to the extent to which parents, in view of their maintenance obligations, can be expected to finance treatment and care if appropriate medical treatment that is objectively considered to be beneficial is not covered by health insurance or government care provision (e.g. invalidity insurance). In such cases do parents have free rein to make a decision, or can authorities make a decision on treatment by imposing child protection measures, with financial consequences for the parents?

The research project does not adopt a purely substantive viewpoint in its examination of the boundary between state and parental co-determination rights, but also explains specific processes and procedures. One key objective of this research project is to provide the relevant authorities with reliable guidelines for action, to stimulate new de lege ferenda legislative instruments where required and, conversely, to grant parents the freedom of action defined by their civil legal custody on the one hand, and by fundamental legal stipulations on the other. 

Dr. iur. Barbara Pfister Piller

2014-2016

With the introduction of adult protection law on January 1, 2013, new statutory representation rights were established for relatives of persons lacking decision-making capacity. Specifically, this means that relatives of an incapacitated patient are now directly authorized to give or withhold substitute consent for inpatient or outpatient medical treatment decisions. Under the previous legal regime, relatives of such patients were only involved in determining the presumed will of the patient and were consulted based on the patient's values and preferences. Under the new law, however, it is the legally appointed representative relative—and only that person!—who must make the actual decision. Often, this involves life-and-death decisions, such as whether to continue or withdraw life-sustaining treatment.

An additional challenge is that the legally authorized relative may not always be the person who knows the patient’s wishes and needs best. However, the treating physician is not permitted to contact other relatives or friends of the patient without violating professional confidentiality. This places a heavy responsibility on the authorized relative, who is often under significant pressure when making such decisions.

The statutory representation rights of relatives of incapacitated persons raise numerous legal questions. For example, it is problematic that there is no ordinary legal remedy available against the representative’s decision. Furthermore, ambiguities and inconsistencies exist in the definition of who qualifies as a legal representative.

The project seeks to determine whether the newly introduced rules governing representation of incapacitated individuals in medical matters are sustainable. To do so, the project applies recognized legal methods and incorporates insights and experiences from other legal systems into its analysis.

The research project was conducted by Dr. iur. Bianka Dörr.