The age-old philosophical question, “If a tree falls in the forest and no one is around to hear it, does it make a sound?” has always reminded us the fact that objects of sense exist only when they are perceived. When it comes to health care, the relevant analogy is: If the best care or good care, as in the case below, is provided, and patients/families are not engaged, does it make an impact on the patient experience of said care? Well, we will come back to the obvious answer at the end of Amina’s story below.

The Institute of Medicine (IOM), in its 2001 report titled “Crossing the Quality Chasm: A New Health System for the 21st Century,” provided a more detailed examination of the immense divide between what we know to be good health care and the health care that people actually receive.

This report outlined the “six aims” necessary for improvement of the health system. In an optimal health system, care must be safe, effective, patient-centered, timely, efficient and equitable. While the concept of patient-centered care is abundant in health care literature, let’s briefly examine at the IOM definition: The individual patient’s culture, social context, and specific needs deserve respect, and the patient should play an active role in making decisions about his/her own care.

Now, let’s get to Amina’s story:

First, a brief background on Amina. A recent immigrant from Somalia, Amina was resettled in the U.S. as a refugee. Upon arrival, Amina presented with some health issues starting with undiagnosed/untreated PTSD, stemming from her witnessing the murder of her father and brother. While in a Kenyan refugee camp, she was raped by armed gangs resulting in a pregnancy that she had no choice but to keep (due to lack of access to an appropriate women’s health facility). Having come to the U.S. during her second trimester of pregnancy, Amina had no understanding of how to access U.S. health care and hence received limited prenatal care, despite a diagnosis of gestational hypertension.

In Amina’s own words, here’s a summary of her experience with U.S. health care translated from her native language:

At approximately 37 weeks of pregnancy, I was admitted through the ER presenting with dizziness and abdominal pain. At the ER, no interpreter was present, and staff relied on the language skills of my friend who drove me. My friend had very limited understanding of medical terminology, so she explained very little about what the doctors and staff were saying. And as the friend left for her job while I was still in the ER, there was no one to interpret for me as I was moved from the ER to the in-patient unit.

During my first night in the hospital, I had machines hooked on me and blood was drawn twice. I had no idea what was going on at all. During that night, I wanted to go to the restroom and could not figure out how to move with all the medical equipment around me. As I feared the shame of soiling myself, I mastered the courage to get up to use the toilet. Unfortunately, I ended up falling down as I was entangled with cords from the medical equipment.

I was then taken for surgery. While I could sense kindness and compassion from the doctors, nurses and other staff, I felt very helpless as I knew nothing about what was wrong with me, most importantly whether my baby and I would survive this ordeal. For some moments, I thought that the doctors and nurses were being very kind because they knew I might be dying or that my baby was not going to make it. I knew or understood less than 20 words of English, and could not put together a simple sentence in English.

Following surgery, I had a healthy daughter and we were both sent home three days later. For many years, I avoided going to the hospitals even when I should have. That particular experience is with me even today, eleven years later.

And here is the same original story from Amina in her native language:

Markaan siddeed bilood iyo bar uur ahaa ayaa waxaa la i seexiyay isbitaalka anigoo war-wareer iyo nabar caloosha ay i hayaan. Qaybta emarjansiga, turjubaan ma lahayn, shaqaalaha isbitaalka iyo aniga waxaa noo kala turjumay saaxiibtay oo gaarigeeda igu keentay isbitaalka. Saaxiibtay aqoon badan caafimaad uma lahayn, sidaa darted wax badan oo ay ii sharaxday ma jirin. Tan kale, shaqo ayay saaxiibtay u carareysay oo wax yar ka dib ayay iga tagtay anigoo weli qaybta emarjansiga jooga, cid ii turjubaantay ma jirin marka la ii waday qaybta bukaan-jiifka.

Habeenka ugu horreeyay oo cisbitaalka la i seexiyay, makiinado ayaa la igu xiray dhiigna laba jeer ayaa la iga qaaday. Waxba kama aanan ogayn meel ay wax marayaan. Habeenkaa waxaan rabay inaan musqusha galo waanse garan waayay sidaan u kici lahaa ayadoo qalabka caafimaad igu wada hareeraysan yahiin. Waxaan ka baqay ceebta inaan isku kaadiyo, waan is dhiirri geliyay si aan musqusha u galo. Nasiib-darro, waxaan ku kufay xargihi qalabka caafimaadka. Ka dibna qalliin ayaa la ii waday.

In kastoo aan dareemayay naxariista dhaqaatiirta, kalkaaliyayaasha iyo shaqaalaha kale, waxaan dareemayay inaan wax caawimo ah haysan. Waxba kama aanan ogayn waxa caafimaadkeyga ka qaldan, muhiim ahaan ma ogeyn in cunugga iyo aniga aan nabad kaga baxayno dhibkan. Mar baa waxaan is iraahdaa dhaqaatiirta iyo kalkaaliyayaasha waxay sidan kuugu naxariisanayaan waa ogaal ay ogyihiin in aniga ama cunugga midkeen uu dhimmanayo. Waxaan garanayay luuqadda Ingiriiska in ka yar 20 eray, mana aan awoodin xitaa inaan isku aaddiyo tix yar oo Ingiriis ah.

Qalliinka ka dib, waxaan dhalay gabar caafimaad qabta, waxaa naloo diray gurigeenna saddex cisho ka dib. Sanado badan ka dib, waxaan ka baqayay inaan isbitaalka tago xitaa iyadoo ay muhiim inoo ahayd. Xusuusta ay igu reebtay arrintaa ilaa maanta ayaanan illoobin, in kastoo ay ka soo wareegtay kow iyo toban sano

Now, let me pose a question about the quality of care provided to Amina. By her own account, the staff were kind and compassionate and she had a healthy baby and went home doing well. The outcomes were desirable – if we’re only to measure physical well-being.

However, the million dollar questions are:

  • How would Amina have rated her experience of care?
  • Would Amina have recommended the hospital for family/friends?
  • Most importantly, what can we do to improve experiences for similar patients?

America’s Essential Hospitals is offering an upcoming webinar that will highlight what best practice hospitals are doing to provide an equitable patient experience of care. We look forward to you joining us for the August 14th webinar on “Patient and Family Engagement Across Languages.”

Mursal Khaliif
Senior Director
Multicultural Affairs, Diversity & Patient Services
Cambridge Health Alliance