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From patient advocate to patient

Even if people receive care that is technically excellent, the experiences they have as patients color their memories of that care



As a healthcare executive, I have written articles and done innumerable lectures about the ideals of transparency, accountability and patient-centered care, a relative of patient engagement.

The Institute of Medicine (IoM) defines patient-centered care as “respectful and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”

Even if people receive care that is technically excellent, the experiences they have as patients color their memories of that care.

For many years, I led an organization that routinely measured patient satisfaction, and in fact sought to learn about patient’s actual experiences of care. After all, stories patients tell are a fantastic source of information about how well we deliver care and where to focus improvement.

Well, little did I know that one day, I would have my own story to tell.

My husband was admitted after having suffered a stroke. My role as patient experience advocate took a turn into real-time live documentary.

Every day became a running vision of myself lecturing about patient safety and patient experience, as events unfolded with each doctor and resident, each nurse, each laboratory and radiology technologist, each every person who walked in the room.

The neurologist took plenty of time to explain what the MRI revealed. It was a stroke, not what we suspected was a severe case of vertigo.

The cardiologist and Rehabilitation Medicine doctor likewise spared no detail in discussing my husband’s condition. The mere word stroke obviously evoked all kinds of bizarre, scary thoughts running through my mind. But I was not the patient. I couldn’t even begin to imagine how it sounded when the news landed in my husband’s ears. I took the “job” of trying to understand every word of the neurologist.

Staying positive can be tricky. First, it’s nearly impossible to sleep in a hospital. The amount of traffic in and out of the room, the noise, IVs, bloodwork and so on make it impossible to get any decent sleep… even in one of the most comfortable newly-renovated suites of the hospital.

Illness became bigger than what we heard or saw every single day.

It is a different viewpoint when you are the patient instead of the healthcare provider. During my unexpected role as a pseudo-mystery shopper this week, I did not know what to expect in terms of patient safety standards, or patient-centered care.

My husband’s medical team consisted of a neurologist, a cardiologist and a Rehabilitation Medicine specialist. They were the best set of doctors who made sure both my husband and I understood the condition, the risks and the care he needed after discharge, and most especially the expectations and medical and emotional care that a stroke patient like him would need at home. The nurses, the Ancillary technologists, the Physical therapists (who we continue to see every week) were such a joy we forgot they were there to do a job.

I liked to talk to the nurses who came at the oddest hours. One told me he wrote poetry. Another said she sold products for special children online. They loved their jobs taking care of people like my husband, and I appreciated every one of them.

These people revealed the human side of health care at its best, and their small acts of care were the kinds of things that I had taken for granted.

Our stay gave us an experience that will give us lifelong positive feelings about his hospital. Because of the kindness, the humanity, we went home not just with a clear understanding of how to move forward into a journey of continued healing, but also feeling that much closer to being emotionally recovered from the events that led up to the confinement.

Now we go for physical rehabilitation for what may take more than a few months.

From the moment we arrived until our discharge from the hospital seven days later, we had the best of care I could possibly imagine. The clinical care was excellent, definitely at par with many more popular or bigger hospitals.

Thank you, De Los Santos Medical Center (DLSMC), for the care, the warmth and the excellent clinical and support team. Raul Pagdanganan, president; and Nilo de Los Santos, medical director — thank you both for leading the DLSMC commitment to genuine patient-centered care anchored on outstanding clinical outcomes and patient safety standards.