The University of Toronto, in a pioneering research study, shed light on the lives of adults suffering from serious mental illnesses (SMIs) who depend on substitute decision makers (SDMs).
This study was published in the well-known Psychiatric Rehabilitation Journal and focused on the tension between the ethical principle of beneficence and loss of autonomy due to substitute decision-making.
Ethical Problem with Substitute Decision Makers: Beneficence or Autonomy
However, when it comes to individual autonomy, this use of substitute decision makers, which is based on beneficence as an ethical concept, normally leads to its marked loss.
This paradox has come into focus especially with regards to the United Nations Convention on Rights for Persons with Disabilities (CRPD).
The CRPD emphasizes dignity, human rights, and most importantly self-determination advocating for elimination of practices like civil commitment, outpatient treatment orders and substitute decision making.
It rather encourages supported decision making a more person-centered approach that promotes autonomy and human rights.
Policy Changes and Challenges from around the World
Though many countries including USA have embraced principles outlined in CRPD, there are some still yet to ratify it.
As such, there are ongoing concerns that allow continued use of substitute decision-making particularly for people living with SMI.
Policy reform efforts have been initiated by the United Nations to protect human rights. Other places like Canada, Peru and European Union have also worked on these changes.
It is aimed at balancing agency within these communities so that their right to having decisions made is not compromised.
Voices Unveiled: Lived Experiences
Eleven participants were asked to provide insights into their experiences as persons with serious mental illness who are dependent upon substitute decision makers.
These individuals had either bipolar disorder or schizophrenia and they talked about their challenges concerning substitute decision makers such as parents, spouses, siblings and public guardians.
Key Findings Unveiled: Themes Arising from Lived Experiences
Therefore five themes emerged from the interviews’ thematic analysis which encapsulated the participants’ experiences:
- Dissatisfaction with Substitute Decision Makers‘ Role: Some participants were not happy about SDM as a decision maker, especially in treatment and involuntary hospitalizations.
- Stigma and Shame: For some individuals, the experience of stigma associated with their diagnosis and dependence on substitute decision makers led to emotions of shame and incompetence.
- Struggles for Autonomy: There was a sense that autonomy and personal identity had been lost among the interviewees who felt powerless and grieved this fact. They were confined by their conditions.
- Mixed Views on Substitute Decision Makers: Some participants felt strained relationships with their substitute decision makers showing lack of trust while others said things were getting better.
- Suggestions for Improvement: The subjects who provided suggestions recommended more transparency in the process, better communication, and an opportunity to regain control over their lives within the framework of substitute decision making.
Implications/Recommended Changes Based on CRPD
These findings are a significant addition to existing body of knowledge regarding people with SMI and SDMs particularly on involuntary treatment or hospitalization.
Additionally, recommendations made by the subjects are consistent with policy changes advocated by CRPD.
It suggests a move from substitute decision making into supported decision making thus preserving rights and autonomy among individuals living with disabilities.
Need for Immediate Policy Reforms
The revelations of the study show that there is an urgent need for policy changes and a shift toward more inclusive decision-making process involving people with serious mental illness.
As public discourses change and more people become aware of the coerciveness of psychiatry as a power relation, the appeal to respect the rights and agency of persons with psychosocial disabilities becomes more pressing.
Conclusively, although progress has been witnessed in amplifying these voices, policy transformations and legal reforms should speed up so that they match the basic principles of dignity, autonomy as well as human rights advocated by the UN CRPD.
