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 CLINICJACO.ERASMUS@MONASHHEALTH.ORG (WEDS & FRI)

RIKI LANE, PROJECT/RESEARCH WORKER RIKI.LANE@MONASHHEALTH.ORG (WEDS & FRI)

DAVID COLON CABRERA, RESEARCH ASSISTANT DAVID.COLONCABRERA@MONASHHEALTH.ORG