machado: there's no room for stigma in health care
patients are not dumping grounds for the prejudices, harmful beliefs and wrongful perceptions of those who are meant to care for them — neither are caregivers.
5 minute read
stigma in healthcare has massive implications on quality of care, creating barriers to access, and also reducing the likelihood that someone who encounters stigma will continue trying to get help.
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i was just a kid when my parents found out that my brother, a hemophiliac, had contracted hiv and hepatitis c through a blood transfusion. but you didn’t have to be super perceptive to realize that as soon as word got out, my family’s world got a whole lot smaller.
not only did many of my mom’s and dad’s friends stop calling, but things became weird and uncomfortable with the parents of my brother’s friends, which, in turn, made it weird and uncomfortable for my brother and his friends. then came the playdate drought, followed by the drying up of birthday party invitations and an odd tendency for those nearby to maintain what they thought was a “safe” distance. all of this, despite the well-reported fact that hiv was only transmitted through bodily fluids like blood, breastmilk and semen.
when stigma bleeds into the places you depend on for care
if you have ever had the misfortune to encounter this deep-seated kind of stigma, you know there’s no point in trying to convince people otherwise or set off on the soul-sucking journey of attempting to change minds and perceptions. you basically hold your head high, hug your kid close and put one foot in front of the other, alternating between ferociously raging at the wankers and pretending what they think doesn’t matter to you — or your child.
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until the worst happens and the stigma bleeds into the very places you depend on for care, advice, support and solace.
my mom will tell you countless stories of healthcare providers donning gloves, masks (before they were de rigueur), face shields — even hazmat suits — during routine appointments that involved no more than a discussion or a physical examination. no bodily fluids here, people, and yet, my brother, and many others like him, were made to feel like pariahs by those who were supposed to protect them, care for them and show compassion and empathy. the ones who should have known better.
those days are in the distant past for my family, but health condition-related stigma — which, according to bmc medicine, can take the shape of refusing care, providing poor or ineffective care, physical and verbal abuse, making patients wait longer or passing them off to junior colleagues, and using stigmatizing language in a patient’s medical record — continues to be alive and well in our hospitals and care facilities. in fact, hiv continues to be at the top of the list of diseases that are stigmatized by healthcare providers, right along with cancer, substance use and mental illness. there are others too: obesity (often associated with laziness and a lack of intelligence), hpv (often associated with reckless sexual behaviour) and irritable bowel syndrome (patients are often not believed because of vague symptoms) are just a few.
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people with mental illness report feeling dehumanized
in a study that looked at mental illness-related stigma based on canadian research, the authors found that people living with mental illness commonly reported feeling “devalued, dismissed, and dehumanized” by healthcare professionals. they were also left out of decisions, treated in a demeaning way, not given enough information about their condition or options for treatment and spoken to using language that was stigmatizing.
certainly, stigma in healthcare has massive implications on quality of care, creating barriers to access, and also reducing the likelihood that someone who encounters stigma will continue trying to get help. it also affects a person’s ability to take their medication the right way, adhere to treatment regimens and follow doctors’ instructions. this, in turn, can leave caregivers holding the bag, making an already difficult job much more difficult.
last week, a colleague shared some of the challenges she was facing caring for her father who, among other serious health issues, struggles with substance use — which, according to johns hopkins medicine, is often seen by healthcare professionals as “a personal choice that reflects a lack of willpower and a moral failing.” being a caregiver was hard enough, she said, without having to manage, deflect and fight against the judgment, negative opinions and refusals-to-help of doctors.
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“i often get asked why i am bothering to help my dad,” she explained, with a long sigh.
now there’s a great example of compassionate care. geez. one way to answer that question would be to point out that he is a human being that deserves dignity, respect, and the best chance at some sort of health, or at the very least, comfort. and even if it’s hard to feel the love for him, what about showing some for person who has chosen to take on his care, who shows up to advocate tirelessly, who has made incredible life sacrifices to do the best they can for their loved one and whose life will never be the same because of it? most importantly, can we acknowledge that making the effort to care is worth it: treatment works, and people recover.
stigma keeps people away from what they need to live a healthy life
that stigma is embedded in our healthcare system across disease states is something that bears recognizing, especially since there is no shortage of research identifying where it comes from, including healthcare providers’ own hidden beliefs and opinions, their negative perception of the patient’s ability to recover, lack of education and their own fear of the disease. in fact, in 2019, canada’s chief public health officer, dr. theresa tam, released a report on stigma calling on healthcare leaders to understand and address the impact that stigma has on the health of canadians. she outlined such effects as “negatively affecting mental and physical health, exposing people to violence and trauma and keeping them away from the resources they need to live a healthy life, like housing, an income and accessible health services.”
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truth. but clearly from my colleague’s story, any work done to address stigma has not yet filtered down to her father’s doctors. so what should she do in the meantime? we agreed that, like a lot of things in healthcare, it’s important to talk about your experiences. keeping quiet just enables ineffective care and allows people to escape accountability. community is also important: find the peeps who not only know what it’s like, but can offer tips and advice on how to dismantle stigma and ensure you or your loved one get care that’s respectful, compassionate and dignified.
most of all, challenge healthcare providers to do what they set out to do in medical school: heal to the best of their ability and do no harm.
patients are not dumping grounds for the prejudices, harmful beliefs and wrongful perceptions of those who are meant to care for them — neither are caregivers.
patients are not their disease. we must stop treating them like they are.
lisa machado is the executive producer of advocacy & better health. she can be reached at lmachado@postmedia.com.
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