Not yet time to celebrate; obstacles to gender-affirming care persist

a deep crack in a brick wall

On July 20, 2022, Nova Scotia announced that it is removing barriers and cutting wait times for Nova Scotians seeking gender-affirming surgery. While this is a historic milestone, reflective of the tremendous advocacy that has been invested in trying to address a shocking lack of funding and resources, this is far from adequate.

Like so many of our government’s recent attempts to try to address our health crisis, by making small changes that do not address the root of systemic problems, this announcement only looks good in a headline. Upon closer examination, it becomes quickly obvious that the barriers and wait times for Nova Scotians seeking gender-affirming care (GAC) remain unacceptable.

This decision will reduce an infinitesimal percentage of the overwhelmingly high number of unnecessary obstacles and agonizingly long wait times faced by patients seeking GAC. Too many barriers to care remain. There is no effective and centralized process for GAC, far too many procedures are denied and most people have to go to Montreal to receive this care. This has become only more disturbing over the last year, as Quebec has created its own set of language barriers for those seeking medical care. These are just a few of the many challenges that are still unaffected by the recent changes and reflect historic discrimination that continues to be translated into embarrassingly harmful public policy.

Delays in care create profound concerns for safety and well-being of patients waiting to receive GAC. Best practice recommends that gender affirming care be prioritized in a public health triage process, due to the associated risks of not receiving care. Sadly, this recommendation is not considered in Nova Scotia.

Nova Scotia has the highest percentage of gender diverse individuals in Canada. Despite this, our province has an abysmal and antiquated system, reflecting a discriminatory approach to health care – including GAC – that continues to fail to address the psychosocial determinants of health, and risks causing more harm than good.

Our system is structured in such a way that the continued challenges facing those seeking GAC are reflective of larger systemic issues that affect all of us. It can be challenging to look beyond the challenges we experience personally and within our closest community to see how the parts of a system are deeply interconnected; because many of us don’t identify as gender-diverse, and a large part of us may have our own biases that affect how we read the news, few of us recognize how significant this issue ought to be for all of us.

Until now, those seeking GAC needed multiple letters from specialists to give them permission to access the care they need. Because of this, those specialists have had to try to meet those needing appointments for letters in addition to the others on their wait list. This translates to unnecessarily long wait times for everyone, not just those seeking GAC. And the truth that is still not fully recognized by the recent policy change is that individuals seeking GAC should not need the permission of so many gatekeepers to access the care that they need, which can tremendously affect their physical, mental and emotional well-being.

This is not the only way that discrimination manifests in Nova Scotia’s health care system, nor are gender diverse individuals the only ones who are affected by the province’s refusal to rethink its approach to health care. Over and over we see investment in shiny new buildings and hiring new people to try to replace the flood of health care professionals who experience severe moral distress and are burnt out by the current system. Truly, there is infrastructure that needs renovation and replacement, and there are shortages of staff and even supplies, but without substantive action to address the real causes of people’s distress our victories will be small and temporary.

Because the current bio-medical approach to health care positions the doctor as the expert, places the patient’s experience and expertise last, and consults other disciplines only in crisis, our system is bottlenecked. This hierarchy of knowledge and power is at the root of many of the poor outcomes that we see in our current system: provider burnout, racism and discrimination, long wait times, poor patient satisfaction, medical errors and so much more. This approach betrays the patient, the provider, the system and the community. And despite research that amply illustrates the fallacies of this approach, the psychological and social aspects of a patient’s care are rarely considered, and when they are they’re rarely assessed by those trained to do so.

Research shows clearly that a shift to person-centred care that emphasizes the bio-psycho-social and spiritual aspects of a person’s care reduces provider burnout and improves patient outcomes. Patient-centred care ensures that the patient’s values and wishes are integrated into any health care plan.

The current process for seeking gender-affirming care in Nova Scotia shows how far away we are from such an ideal.  Even if there were adequate providers in this province (there are not), it remains physician directed. This causes an unnecessary burden on physicians, and contributes to the long wait times that every Nova Scotian must experience at some point. It also reflects an outdated set of values that fails to recognize the individual patient as the real expert in what they want and need. Shifting to person-centred care that emphasizes an interdisciplinary approach and addresses the social determinants of health leads to shared decision making, better outcomes and reduced costs.

Unfortunately, Nova Scotia has yet to acknowledge the need to do so, thereby exacerbating the long wait times, provider burnout demographics, systemic discrimination and poor patient outcomes that remain one of the top concerns of most Nova Scotians. Shifting to a collaborative model of care is critical to addressing the growing problems facing us all.

And yet, despite so many of us working in health care who advocate for such a change, most attempts to fix our health care system try to merely address wait times, rather than examine the underlying issues that continue to contribute to provider burnout. Our physicians are burning out because they are being asked to be not only physicians, but counselors and therapists, social workers, navigators and a whole host of other roles; these would be better filled by a truly interdisciplinary team that is working collaboratively to help meet patients’ needs in a proactive way.

One example of a systemic shift that could alleviate the pressure on nurses and physicians would be to move away from the false distinction between physical health services and mental health services. Doctors and nurses are often called upon to provide care and counseling in areas beyond their training and expertise, because they are working in a strictly bio-medical model of care delivery where social workers and occupational therapists and chaplains and other providers may be excluded, or only called upon when there is an emergency. By integrating a full interdisciplinary team into the care of every patient, and by working to create patient-centred care plans that ensure that every person on the interdisciplinary team is working within their scope of practice, doctors and nurses can have the support that they need to focus upon those areas where their expertise is needed, and patients can be reassured that the full spectrum of their needs is addressed.

This is the vision: patient-centred care that optimizes the skills of every member of the interdisciplinary team and meets the needs of each patient. However, one need only look at the tragically flawed and disjointed process of someone seeking GAC to realize how far Nova Scotia’s system is from achieving this goal. While reducing the number of letters that people need from “experts,” it continues to perpetuate the patriarchal and colonial assumption that patients cannot be trusted to determine what they need.

Nova Scotia also continues to deliver services in ways that don’t address the unique cultural needs of individuals and communities, and to hire people who don’t reflect the patient population they’re called to serve. For example, there was a recent internal consultation with Nova Scotian providers of GAC that was done by a government employee who did not understand the basics of what is involved in the WPATH (World Professional Association of Transgender Health) training or guidelines for care; the lack of representation and first voice input in policy development remains a pressing problem.

All current guidelines for accessing care continue to rely upon the pathologizing diagnosis of gender dysphoria. Rather than every person being able to decide, in partnership with their care provider, what treatment is best for them, current policy continues to dictate standardized treatments that ignore the unique needs and circumstances of each individual. For example, many nonbinary or agender individuals do not wish to transition to take hormones, and yet this remains a requirement in many situations. And arbitrary determinations of what kind of chest development qualifies for top surgery reflect profoundly discriminatory beliefs, with many people being denied the care that they need.

Most disturbingly, services such as prideHealth remain profoundly underfunded and under-resourced, struggling to keep up with the demand for services and information for a whole province. With only one fulltime employee, it can barely address the many requests for referrals for gender-affirming care that they receive daily, let alone the vast health care needs of 2SLGBTQIA+ individuals that are completely unmet within the current system. It is difficult to look at the allocation of health care resources in this province, and see how little is dedicated to the queer community and not conclude that homophobia and transphobia are rampant within public health decision making.

Finally, the lack of investment in this area of care, along with the continued defense of a strict bio-medical model of care that does not address patients’ unique needs and circumstances, continues to ] not only lead to poor patient outcomes, physician burnout and backlogs of care for everyone, but perpetuates discrimination. Reducing the number of letters needed is great, but is only a drop in the bucket. So long as we have physician-centred care, rather than patient-centred care, we will continue to see both bias and burnout.

What is needed is a complete system overhaul, and a shift to patient-centred care that addresses the psychosocial determinants of care, which research has already demonstrated are critical. Additionally, Nova Scotians desperately need focused investment in areas of care for populations that have faced, and continue to face, profound and life-threatening discrimination.

Nova Scotia’s public health system is straining at the seams, but rather than reimagine what health care ought to be, and transform itself in ways that align with its population’s evolving needs and values, it is struggling to keep up with a patchwork of limited, temporary solutions that do little to address the underlying issues, many of which are founded in systemic discrimination.

Nova Scotia’s health care system was already in crisis before the COVID-19 pandemic, and has truly struggled over the last few years. A flood of new residents moved to the province in response to the governmental advertising campaign to grow its population towards a stated goal of 2 million people living here by 2060.

While Nova Scotia has certainly garnered praise recently, with its emphasis on helping Ukrainian doctors move to the province, some critics have questioned whether this is because they are predominantly white. Doctors in Nova Scotia are themselves affected by racism, a fact that is also reflected in the health inequities that patients face.

There are many problems with profoundly underfunded and shockingly under-resourced public health services that reflect systemic discrimination grounded in historic prejudice. People are too often unable to access the care that they need and have a right to receive, or have to be sent to a different province to reach it, at great cost.

Many patients currently seeking gender affirming care will have to travel to Montreal to obtain care, or wait years to access it closer to their home. Given the large numbers of gender diverse individuals in Nova Scotia and across the Atlantic provinces, and considering the many people who have moved here, it would be wise for Nova Scotia to consider developing a health care centre for GAC that all of Atlantic Canada could access. This could actually bring in income, while also reducing wait times and improving health outcomes.

This may not happen immediately, but a good first step would be to at least invest in prideHealth in a way that truly represents the size and diversity of the population it serves, and demonstrates that the health of 2SLGBTQIA+ Nova Scotians is valued.

So while I certainly applaud the community advocacy that has brought us this far, I am still not ready to celebrate, and see every reason for all Nova Scotians to be concerned about the many barriers to accessing care that still exist for gender diverse individuals and for so many others. The persistent lack of funding, and the lack of critical reflection regarding our antiquated and paternalistic approach to health care ought to eclipse any celebration garnered by the recent and historic step to streamline the number of letters that are needed to access GAC.

Let us not lose sight of the facts while applauding the headlines.

N Siritsky, RSW
NSCSW Professional Practice & Advocacy Consultant