When you're sick and facing discrimination

Connie* shed tears freely. She was heartbroken and in pain. She lay curled up in her bed staring at the wall, wishing she could die.

At 27 years, Connie knew everything about pain. She had lived it all her life. She was barely a year old when she was diagnosed with sickle cell disease. She had a stormy childhood, in and out of the hospital, with countless admissions due to the painful sickle cell crisis.

As she got older, the number of admissions reduced, but for the few times she had to be in the hospital, she would need to use stronger pain medication in form of opioids, to keep her discomfort at bay.

After high school, Connie studied nursing and as a nurse, realised that she had easy access to pain medication. She fell into the bad habit of self-treating. She would access medication meant for patients and inject herself when she was having a bad day, avoiding formal consultations with her doctors.

Though her need for hospitalisation had drastically reduced, Connie had developed a new problem, medical opioid dependence. She now injected herself to get the opioid high, instead of for pain relief. This affected her work and complaints about missing patient drugs in the wards led to investigations that pointed to her as the culprit.

Her employer was kind enough to understand her predicament and instead of dismissing her, gave her the option of seeking help through rehabilitation as a condition for keeping her job. Connie had no option, but to accept the terms.

It’s at the rehabilitation centre that Connie faced the most difficult time of her life. She was among people who fought various addictions, but she felt singled out by virtue of being a nurse.

HIT ROCK BOTTOM

Though she got the care she needed, she felt the unspoken judgement that as a nurse she should have known better than letting herself get caught up in the vicious cycle of addiction.

She felt that she did not receive due empathy and all because of her professional background. She would cry in pain for hours because of sickle cell crisis where she was forced to endure suboptimal pain management as opioid painkillers were restricted in her treatment plan. On a few occasions when she would hit rock bottom, she contemplated ending it all by taking her life.

Listening to Connie’s experience was heart-wrenching. Today she is doing well, having managed to kick the habit and optimise her sickle cell disease care to minimise the need for pain medication. She no longer practises nursing, but remains a strong advocate for patient rights.

What Connie went through is by no means an isolated incident. Many a times, patients in our care experience subconscious discrimination resulting from inherent characteristics they have no control over.

Several published studies in the past decade have documented that black people are less likely to get adequate pain medication compared to their white counterparts because of an underlying false perception that black people have a lower pain rating! This was shown to impact on care especially in the emergency department where patients who are likely to have pain as a major complaint are first seen.

In our local set-up, this belief persists especially in our maternity wards where pain management options such as epidural analgesia are not part of routine care and patients are rarely offered this as an option. Childbirth is regarded as an experience expected to be painful and that’s that.

ELIMINATE PREJUDICE

Another trait that results in patient discrimination is obesity. Again, in the healthcare setting across the world, obese people are reported to be more likely to receive substandard quality of care by virtue of their weight. The healthcare providers are more likely to subconsciously create an environment where the interaction between the provider and the patient is marred by low self-esteem, distrust and stigma.

Even worse is the divide brought about by socio-economic classification. The perennial challenge of healthcare workers being more likely to be attentive and engaging when attending to patients of a higher socio-economic background is entrenched in the health sector too. This has even led to creation of a meme depicting a doctor in a public hospital with a menacing face alongside a smiling face of the same doctor in a private hospital.

The bias that is subconsciously created in these circumstances impacts negatively on patient outcomes. It intimidates the patients from seeking care out of fear of discrimination, leading to delays that worsen morbidity and lowers the patient’s quality of life.

We must all endeavour to correct this bias. As patients, we must learn to demand for quality care as is our right as enshrined in the law of the land. We must call out injustice where it is demonstrated in order to kill the negative culture of patient discrimination. We are all potential patients hence we must recognise that functional health systems benefit all of us. No human should have to endure indignity when sick.

As healthcare providers, we must be the leaders in advocating our patients’ rights. After all, they are the reason we have a job in the first place. We must consciously work to eliminate prejudices in our practice of medicine, hence the need for self-reflection and peer review where necessary. We serve the most vulnerable at all times and it is a privilege to be trusted with life. We must never abuse that trust!

Dr Bosire is an obstetrician/gynaecologist