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Complexity, risk and client autonomy in
TGDNB healthcare:
Towards a collaborative gatekeeping
model
Maya Levin Schtulberg1
Dr Riki Lane2
Dr David Colón-Cabrera2
1 University of Copenhagen
2 Gender Clinic, Monash Health
Overview
➢ Background
➢ Rupture
➢ Complexity
➢ Good Care
➢ Conclusions
Background
Literature on trans, gender diverse and non-binary (TGDNB) healthcare often critiques gatekeeping access to gender-affirming treatment
Mental health care assessment as social control that pathologises and defines TGDNB people
Rupture: Negative experiences lead TGDNB people to often distrust clinicians, especially mental health professionals. Desire to repair rupture has lessened barriers
Clients with complex needs: leads to seeing gatekeeping & mental health assessment as safeguards
This contested field disrupts western medical binaries: body/mind, male/female, sex/gender
Problem statement: How do Monash Gender Clinic clinicians navigate the mental health assessment, especially in the context of rupture and complexity? What can this tell us about the provision of ‘good care’?
Methods: 3 months ethnography
Participant observation
Clinical review meetings
Consumer advisory panel
ANZPATH training seminar
Client appointments
Semi-structured in-depth interviews
All clinicians
4 clients & 1 former client/consumer advisor
Document analysis
Analytical framework Mol (2008)
Logic of choice
Western ideal to prioritise individual patient autonomy above all else
Logic of care
Embraces interdependency of human nature while accounting for necessary doctor/patient collaboration to account for unexpected events
Rupture and repair
Rupture: individual and community
Individual breakdown of therapeutic relationship
So common between TGDNB people & clinicians = community level rupture; first-time clients immediately distrust clinician
Clinicians attempt to repair individual rupture: collaboration, transparency, awareness of their power; client does not need to ‘prove’ their gender
Clinic attempts to repair community rupture: e.g. implement consumer panel advice for gender-neutral toilets or changed clinical processes; often meet systemic and bureaucratic barriers
Gender-affirming treatments such as hormones have varied, unexpected and serious impacts on one’s body, mind and social situation, especially as TGDNB people continue to face discrimination. This partially explains why a thorough mental health assessment is still used despite criticism
Complexity
Whether clients have or don’t have complex needs is not easily defined
The mental health assessment can reveal various complexities including: ability to consent, cognitive, psychiatric or psychosocial complexity
I think the complexity comes in not having a clear understanding of the person's narrative. So where it's not quite clear how their gender identity has developed and how they've reached where they are now. And particularly where it's then been side tracked or been influenced by other factors. By mental illness, by complex psychosocial issues and they've ended up here but you've got no idea how they got there. Or they're here and they've got no idea where they're going because there are so many other issues and factors involved. (Clinician)
…complexity
Different ways to analyze complexity –mechanism for social control versus desire to do no harm to the client
Diagnosis and the tools for measuring psychiatric disorder are culturally situated and measured against social norms (Hacking 2006)
Diagnostic tools and categories are imperfect simplifications; yet some categorisation is needed to safeguard clients from potential harm and clinicians from liability
Complexity highlights clinicians’ concerns about avoidance of harm; more risk providing access to treatments
Politicization of TGDNB health creates barriers to talking about certain complexities, like sexual abuse trauma, for fear of pathologising TGDNB people or devaluing self-identity
Concerns about capacity to consent raise dilemmas around paternalistic care and denying client autonomy: posing the question: What is good care?
…complexity: Dissociative Identity Disorder
While rare, misdiagnosing DID as Gender Dysphoria is an ongoing concern, but no longer an absolute contraindication
Symptoms can be similar: being TGDNB in a hostile society can lead to feelings of a ‘split’ identity
Risks: client losing memory of treatment; conflict between alters
Need to acknowledge cultural context to avoid over-diagnosing complexity
It was clear to me from talking to this person that that wasn't what they meant, that they had a continual sense of self through that time when they were dissociating and it was more they felt that their hands, for example, were not their hands, …. But they didn't have a sustained period …or, in fact, any time that they didn't remember. So because I felt that that wasn't a concern, I just didn't mention it [to the team]. (Clinician)
Good care
Gatekeeping (e.g. Monash GC comprehensive) and collaborative (e.g. Equinox informed consent) models are often falsely contrasted as if one denies client autonomy and the other does not
Mol’s (2008) argument suggests that lacking full autonomy does not contradict good care
If none of us are autonomous then embracing interdependence and encouraging active patient participation can achieve good care through a collaborative and transparent process
Such a process may simultaneously promote client autonomy and interdependence by giving the client the option to protest the process but also receive support from the clinician. If this improves the therapeutic alliance it suggests it can also repair rupture
Collaborative gatekeeping
Resulting from this research, what we call collaborative gatekeeping refers to a combination of the two usually contrasted models in TGDNB health and describes a form of gatekeeping that is enacted in the name of good care, where transparency, client participation and collaboration, flexibility and long term care are key
Neither model can be stand-alone because gatekeeping without collaboration would be, as it has been, unethical and collaboration without gatekeeping in the present western medical model is impossible
People have this destination and they don't have a map. I feel like I'm helping them pave the way to that destination. I'm helping them build that road, and everyone's road is different. (clinician)
…collaborative gatekeeping
Collaborative gatekeeping intends to provide individualized care, but the gatekeeping framework established by the SOC restricts the extent of truly individualised care
Back to the questions: Can clinicians:
keep the clients with complex needs safe?
avoid putting clients without complex needs through unnecessary processes?
account for community complaints?
If the answers are no, collaborative gatekeeping as ‘good care’ cannot be universally applied
Clients with complex needs & those who chose a more thorough assessment benefit most
Some clients with complex needs resist receiving extra support and delays, although enacted with the intention of non-maleficence.
If restrictions are in the name of safety, is ‘avoidance of harm’ a façade of paternalistic protectionism that reduces client autonomy by deciding for them what was safe?
Conclusion
Gatekeeping in some form remains for several reasons:
All access to treatment is gatekept in western healthcare
TGDNB health disrupts western medical understanding: Hippocratic oath; body/mind dichotomy
Clinicians are concerned for psychosocial wellbeing of clients, especially clients with complex needs
Looking forward
Balance risk aversion and client autonomy: benefits of different models
Proposal: Common client referral system
Those without complex needs go to informed consent
Those with complex needs go to comprehensive models
However, not always easy to tell who has complex needs
Future research needs to investigate this relationship of complexity and good care
Questions?
WEBSITE: HTTP://MONASHHEALTH.ORG/SERVICES/SERVICES-F-N/GENDER-CLINIC/
JACO ERASMUS, CLINICAL DIRECTOR OF GENDER [email protected] (WEDS & FRI)
RIKI LANE, PROJECT/RESEARCH WORKER [email protected] (WEDS & FRI)
DAVID COLON CABRERA, RESEARCH ASSISTANT [email protected]