The sudden loss of freedom, personal space, and control is an incredibly stressful experience for those admitted to involuntary long-term care. While we Music Therapists have a unique potential to mitigate the trauma surrounding these admissions and to foster a sense of hope and agency in our clients, we also face some unique ethical dilemmas while building rapport with people in this situation. Through the example of clients admitted to a specialist care home in The Netherlands as a result of the Syndrome of Korsakoff, this presentation will invite fellow music therapists from around the world to reflect on the subject of consent, freedom, power, and control within their own practices.
The “Prison Without Walls” is a metaphor one of my clients used to describe the long-term care facility and perhaps his entire current life in involuntary care. More often than not, clients whose physical or mental condition is severe enough to warrant institutionalization will find similarly bleak images to express their lack of freedom, and lack of choices – their disempowerment.
This is especially true for clients with the Syndrome of Korsakoff: an irreversible neurological condition caused by a B1 deficiency, characterized by memory impairment, confabulations, and problems with executive functioning. Approximately 25% of people with the diagnosis will depend on long-term care, however, due to the high rate of misdiagnosis and the lack of specialist care worldwide many of them will end up scattered around facilities meant to house people with other conditions.
In my country of residence – The Netherlands – the Dutch Compulsory Admission Act (BOPZ) will permit involuntary care when
1) the patient does not agree with the admission,
2) their mental condition poses a danger to themselves or others and
3) an alternative solution for admission is not possible.
In cases of Korsakoff, patients are often admitted at a relatively young age, with nearly intact verbal capabilities and a will to stay in control of their own lives. As a result of this and their lack of illness insight – dealing with their involuntary admission will inevitably lead to conflicts with the care team, family caregivers, fellow residents…and sometimes even us, Music Therapists. This raises a few questions that might be relevant for many of us:
To what extent do we as Arts Therapists accept “no” for an answer? How does the role of the art therapist differ from that of a nurse administering life-saving medication? What can the medium of music offer for people hindered in their personal freedom and decision-making capabilities?
In this presentation I will introduce the most poignant ethical dilemmas a music therapist has to face while treating people in involuntary care. Citing relevant literature and using the example of clients with the Syndrome of Korsakoff I will invite fellow professionals to extrapolate and reflect on questions of consent, personal space, agency, power dynamics, and the role of the music therapist as a “cognitive prosthesis” for people whose personal freedoms are blocked by two sets of prison walls: that of the institution and that of the disease.
Identify practices to foster clients’ sense of personal agency, functional or psychological independence, and coping skills.
Evaluate the appropriateness of a referral for music therapy services for individual clients on a case-to-case basis.
Reflect on situations where a power imbalance or miscommunication between the client, therapist, or the healthcare team challenges the therapeutic relationship or the outcome of the treatment.
Discuss the role of boundaries in the music therapy room and beyond – including those of our clients, our own, and the structural boundaries inherent to the musical medium.
Rita Kárpáti (MA) is a Music Therapist working with people with acquired brain injuries and the Syndrome of Korsakoff in a specialist residential care home in The Netherlands.