How I lost a breast due to bad patient experience

A simple question of “When was your last menstrual cycle?" led to a mastectomy.

Simple as that... wait a minute.

Is it that simple a story?

I am Ahimaa, (pronounced a:hi:maa).

A 48-year-old female breast cancer survivor with one breast due to bad patient experience. Here is my story...

I have Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, meaning I was born without a uterus.

I was diagnosed at age 17 when my parents realised I was not just a late bloomer but rather had a medical condition.

A condition I have struggled with psychologically since diagnosis.

Nosocomephobia

In my early adulthood, I developed the initial stages of Nosocomephobia; the fear of hospitals.

Responding to the question “When was your last menstrual cycle?”

(a very common experience for most adult females in hospitals/clinics in Ghana), was always such an ordeal, it meant narrating my story of how I do not menstruate because I have no uterus.

My anxiety emanated from narrating the story to triage Out-Patient Department (OPD) nurses and to the inadvertent hearing of waiting patients.

This always ensued in nonverbal responses of pity, sympathy, surprise, concern..., not an iota of empathy from the nurses regarding how sensitive this question is.

One fine day in October, the nosocomephobia took a turn.

Breast cancer awareness campaigns were ubiquitous with various shades of pink.

As a precautionary measure and aligning with the narrative “early detection can save a life”, I took steps to save my life and decided to undergo a breast examination.

Privacy

The venue for the breast examination was a conference room, the actual examination area was part of the conference room, partitioned by a green hospital curtain divider (reminiscent of childhood injection days) for patient privacy.

On the contrary, it was merely a sense of privacy as conversations behind the curtain were audible enough to patients waiting.

Here I was lying on the examination bed when the dreaded question popped up “When was your last menstrual cycle?”

I hesitated, took in a deep breath, and mumbled my response, indeed it was muffled, so had to repeat my response in a low tone, to which the healthcare provider responded: “oh you don’t have a womb!” to the hearing of anyone keen on listening in.

After my examination, I was awash with stares from waiting patients, stares so intense, that it felt like they were boring into my abdomen to confirm if indeed I had no uterus.

I vowed never to subject myself to such humiliation again.

That is how I developed nosocomephobia, which led to the late detection of breast cancer and consequently the much-dreaded mastectomy.

I was lucky.

Though I lost a breast, I have my life. Others may not.

Prioritising great patient experience is critical to the overall quality of health care and the whole patient journey, which should be holistic encompassing the physical, emotional, and psychological well-being of patients.

Disclaimer: Though this is a true story, it is not the writer’s experience

Client experience management

Patient experience encompasses the sum of all interactions a patient has with a healthcare institution, the following are some elements of patient experience that could have changed Ahimaa’s story.

Privacy and confidentiality are essential to a great patient experience, these are non-negotiable.

Protecting patient privacy and maintaining confidentiality gives patients confidence and assurance in the healthcare provider.

Lack of privacy and confidentiality led to Ahimaa’s phobia of hospitals.

Communication is key to quality healthcare; this includes both verbal and non-verbal cues.

Healthcare providers must be sensitive to patients’ communication cues and respond appropriately.

Healthcare process design should be intentional with value creation in mind.

Seamless coordination across healthcare settings contributes to quality patient experience.

Patient feedback is an essential insight for continuous improvement.

Trends resulting from feedback are great, however, individual stories such as Ahimaa’s are valuable and must be integrated into staff training for effective transformation.

Compassion and empathy make the world a better place.

These two elements build trust and make patients feel valued and understood.