People with mental health or substance abuse issues can face barriers to care
When her son Stephen began experiencing depression and anxiety in high school, Dorothy Bakker didn’t realize it at first.
“People don’t always want others to know that they’re struggling,” she says. “Maybe it’s about stigma. He didn’t want to be labelled. Or he didn’t want me to worry.”
Later, in university, Stephen was diagnosed with a bipolar mood disorder, and also had an alcohol and cocaine addiction. Yet a big hurdle to his care remained stigma.
Bakker recognizes this not just as the mother of a patient, but as a doctor herself. She is a family physician at the University of Guelph’s Student Health department, and an associate clinical professor at McMaster University.
There are all sorts of ways stigma plays out, from keeping issues secret to feeling marginalized. Other manifestations may seem benign, but reinforce the idea that patients are on their own. Or that the problem isn’t really serious.
Dr. Bakker would like to see physicians be more willing to engage in substantial conversations about the mental health or substance abuse issues of their patients. She feels they, too often, honour an assumed reluctance to disclose, so they don’t push. That’s stigma.
Just as troubling to Dr. Bakker is the possible minimizing of these issues. She often accompanied Stephen when he saw health-care professionals — to emergency after his first manic episode; to an early intervention psychosis clinic to see a psychiatrist and family therapist; to an inpatient alcohol and drug rehabilitation program for his addictions; and to subsequent meetings with health and mental health-care providers.
“Never once did they say my son had a serious disease. Never did they plainly lay out the prognosis, as troubling as it may have been.
All conversations were veiled reassurances including that he was a ‘nice young man,’ ” says Dr. Bakker.
That’s an aberration in health care, she says. “I don’t think, as physicians, we similarly minimize illness at a diabetes, cancer or cardiac clinic. No, the disease, prognosis and consequences of non-adherence to treatment would be clearly explained. We’d offer rapid access to a specialized clinic, no less. Instead, in mental health, we often spare the person and the family of the truth.”
Which is part of stigma too. Stigmatizing comes from judging and impugning (or by people feeling they’re being blamed and labelled), and assumes several forms:
- Social stigma, i.e. negative attitudes and actions.
- Structural stigma, when institutions (and institutionalized practices) don’t take the problem seriously enough or provide the appropriate response.
- Self-stigma, when people internalize social and/or structural stigma.
All of it creates potential barriers to accessing care.
Quick to judge
So what would happen in a diabetes clinic? Not this: someone telling you to just yell at your pancreas until it secretes more insulin.
Dr. Diane McIntosh, a psychiatrist in B.C., was being facetious when she made the comment in an article for the Huffington Post. But she’s serious about what she sees as a significant problem — the stigma perpetuated by some health-care professionals around patients with mental health or substance abuse issues.
It’s not surprising. After all, stigmatization is a broader societal phenomenon. Many patients self-stigmatize, and fail to share what they’re going through or seek help. Others can buy into myths, feeling that people should just be able to will themselves into wellness — and are weak if they can’t.
Of course, not all doctors stigmatize. Maybe relatively few do. But there can be little dispute that humans seem to be hard-wired to judge (others and ourselves).
In one study published in Scientific Reports, researchers had subjects read various scenarios with negative and positive outcomes. They were asked to determine the level of intent in the actions described in the stories. When subjects read the negative stories, they were likelier to light up the amygdala. Not so when they read the positive ones.
In short, people reacted to negative stories more emotionally and to positive ones more rationally. One conclusion: we’re quicker to assume the good acts of others just happen, while bad acts are deliberate. That can influence how (and if ) we seek and offer help.
See the person, not the label
Of course, many patients are eager for help. And they’ll find many doctors who offer the treatments, referrals and support needed.
If some doctors are less effective with patients who have mental illness or substance issues, the fault doesn’t always lie with stigma. Training is one issue, as is a tendency by some doctors to view treatments as more of an art than a science.
“They often feel ill prepared addressing the problems,” says Dr. Christine Courbasson, a clinical psychologist who works with the Canadian Mental Health Association in Ontario.
These are complex health challenges. Still, stigma plays a part in the way patients are treated.
The Mental Health Commission of Canada has reported that many people with mental health problems experience some of the most deeply felt stigma from frontline health-care professionals.
These patients often feel disrespected, i.e. the doctor doesn’t see a person, just a label. Doctors might feel (and send a message) that recovery is improbable or impossible. Research shows too that some doctors associate pessimism about recovery with a sense of helplessness. It can lead them to believe that what they do doesn’t matter.
Stigma can play out in other ways. Do doctors probe for mental health or substance abuse issues? Do they miss a diagnosis because they attribute a symptom to mental health or substance abuse challenges, rather than to another physical condition? Do they withhold certain services or referrals until a patient’s mental health or substance abuse issues are better managed?
Or do they, as Dr. Bakker feels, downplay the disease?
“We aren’t declaring mental illness as the very real and serious disease that it can be.”
“Maybe we fear to make it worse,” says Dr. Bakker. “Maybe we don’t want to admit the prognosis ourselves, as we often lack effective and timely treatment options. Maybe we too have experienced mental illness, or have loved ones who are mentally ill and fear the diagnosis. Inadvertently, these behaviours are stigmatizing. We aren’t declaring mental illness as the very real and serious disease that it can be. In fact, our response says that we aren’t taking it seriously.”
Over time, she says, Stephen was seemingly doing better. He became an AA sponsor and spoke publicly about his recovery. He won a Transforming Lives Award from the Centre for Addiction and Mental Health (CAMH).
In October 2017, Stephen was completing his Masters, and had just submitted a grant proposal for his PhD. Then, a day later, he used cocaine that, unbeknownst to him, was laced with Fentanyl. He died with five times the lethal dose of Fentanyl in his blood – a victim, says his mother, of a relapse in his mental illness and addiction. He was 25.
A disease, not a character flaw
To combat stigma, doctors should focus on communication and education. To start, that means respecting the person behind the illness. They have a disease, not a character flaw. Be aware of how words and actions can lead to harm instead of healing.
Patients dealing with mental health or substance challenges may already have a poor self-image. Doctors (and other care providers) should recognize their power to belittle or diminish by a comment, a gesture or a look.
Use language that conveys concern instead of judgment, and acknowledges that recovery is possible.
Even the choice of language used privately can be damaging. A study reported in the Journal of General Internal Medicine in May 2018 found that bias can be transmitted from one clinician to another through medical records.
The study used a hypothetical patient and medically identical information. One record used neutral language to describe the patient, e.g. “He has 8-10 pain crises a year, for which he typically requires opioid pain medication in the ED.” The other record used language that implied a value judgment, e.g. “He’s narcotic dependent and in our ED frequently.” Doctors who saw the stigmatizing language in records tended to have more negative attitudes towards the patient, and less aggressive treatment plans.
Words matter. So do assumptions. Remember who’s vulnerable – anybody, of any age, from any background. As Dr. Courbasson reminds, the substance user can be the young street person. Or the respectable grandma hooked on anxiety meds (and who sometimes mixes it with other meds). Don’t stigmatize by stereotyping.
When talking to patients, the way the health issue is framed is important. There may be psychosocial components, but these are medical/biological/physiological problems. Using that conception can also help doctors see these illnesses (as one study noted) as more controllable, less permanent and more recoverable.
As with any area where care can be improved, training is essential. That can mean learning more about substance abuse and mental health disorders, and specifically about stigmatization. Many resources are readily available (see sidebar below).
We break stigma when people see mental health or substance abuse challenges as a disease. When we avoid prejudice and labels. And when patients feel comfortable about coming forward for help. When they do, the hope is that they encounter professionals who are equally compassionate and caring to all patients – whatever their health-care issue. No shame, no blame.
Access to care
Beyond being more reluctant to seek care, stigmatized patients may have trouble finding a doctor. The CPSO’s Accepting New Patients policy notes that physicians must accept new patients in a manner that respects the rights, autonomy, dignity and diversity of all prospective patients.
While a first-come, first-served approach must be used to accept new patients, the policy states that sometimes it may be appropriate for physicians to prioritize access to care for higher-need and/or complex patients, including those requiring urgent access to care, those with chronic conditions, disabilities and/or mental illness.
The policy also notes that it is inappropriate for physicians to use introductory meetings such as ‘meet-and- greet’ appointments, and/or medical questionnaires to vet prospective patients and determine whether to accept those patients into the practice. Doing so may be considered discrimination against prospective patients.
Resources
In 2018, the Mental Health Commission of Canada and CAMH launched an “Understanding Stigma” online course. Hosted at camh.ca, it helps health care providers and front-line clinicians develop strategies to improve attitudes and behaviours. The goals: improve patient-provider interactions, and enhance care for people with mental health/addiction problems.
The Centre for Effective Practice offers useful resources at cep.health/tools, including the “Keeping Your Patients Safe” guide. Primary care providers can face uncertainty around identifying and acting on signs, symptoms or behaviours that suggest a mental health condition in adults. This CEP guide looks at how to investigate and assess, and initiate appropriate referrals and interventions.
To help with younger patients, use a related CEP resource: “Youth Mental Health: Anxiety and Depression Tool.” It looks at supporting your patient, screening and assessment, management, and follow-up and monitoring.
CEP also has an “Opioid Use Disorder (OUD) Tool.” It walks primary care providers through screening, diagnosing, treating and communicating with patients who have (or are at risk of) OUD. The tool emphasizes a stigma-free and empathetic approach, acknowledging OUD as requiring chronic disease management.
The Mood Disorders Society of Canada has an interactive online course called “Combating Stigma for Physicians and Other Health Professionals.”
