Patient Advocacy: A Personal Story

Patient advocacy involves supporting a patient as he or she navigates our healthcare system.  It is about making the patient’s wishes reality.  Over ten years ago, I experienced an emotionally charged run-in with our healthcare system that I now clearly see was the seed that first sent me  on the mission I call this blog. During that experience, I became a patient advocate for my dad, who was fighting bladder cancer.  This experience changed and molded the way I approach our healthcare system today. It opened my eyes to problems that I never really saw until I started looking beyond the intense emotions surrounding sickness. I will be sharing my observations and experiences from one week out of the four months in particular, because it was packed with two basic structural problems in our healthcare system that must be remedied before  Americans can get the highest quality health care; namely,

  1. Lack of Patient Advocacy.  Our healthcare system primarily operates to accumulate billable charges and the “best” interests of the patient are often lost in the desire for profits and income.
  2. Lack of Coordination of Care. Healthcare practitioners “divide” up the patient and largely operate as independent “parts” contractors. Any given practitioner does not question the treatment provided by other practitioners and no one medical professional coordinates care. If patients (or patient advocates) do not demand communication with healthcare professionals, then their input into care will not be heard.

My Week as a Patient Advocate for My Dad: The Story

My parents were in their 70s (and on Medicare) when my “never sick” dad was diagnosed with bladder cancer. Two months after his first surgery (performed at Hospital A), he was recuperating at home, when he suddenly started bleeding and had to be rushed to a hospital (a different hospital that I will refer to as Hospital B). After a phone call from my mom (I lived across the country), I hopped on a plane to help and support her.  I was surprised that my dad was having trouble because reports after the first surgery were very positive (“they removed the cancer” my mom thought).

As expected, my mom was emotionally upset and trying to cope with the present situation. Since she was ill-prepared to serve as my dad’s patient advocate, I stepped in to fill the gap.  Before going to the hospital, I attempted to get a clearer picture of why my dad was in the hospital and how it related to the health care he had received since he had first been diagnosed.  This information would serve as the foundation to coordinate a future course of action. Unfortunately, my mom had precious little medical documentation and had only her memories from several interactions with various healthcare practitioners. Why my dad had bled and needed hospitalization was not clear to her.

Instead of running around from doctor’s office to doctor’s office to hospital … getting my dad’s health records, I decided to directly question the medical staff at Hospital B for answers while also attending to the current health situation.  Medical care (a series of billable events) was being done to my dad daily as deemed necessary by the medical staff assigned. My mom was not being consulted on the care being ordered and my dad’s family were just the audience watching the “show”.  The doctors were not making themselves easily available for the communication my mom needed to participate in my health care. It therefore became my job to get “pushy” (“engaged” in today’s lingo).

I started with the very accessible nursing staff at Hospital B, but they would only give us limited information. If we wanted to ask the doctors any questions, we were told the best time would be between 6 and 7 a.m. (before visiting hours) when the doctors typically made their rounds. Over the next five days, my mom and I  arrived before six  hoping to “catch” the doctors before they disappeared for another day.  When not in my dad’s room, I was able to watch comings and goings from a chair in the visitor’s lounge to make sure I didn’t miss a doctor.  By the third day, I  got lucky and had four separate doctors (surgeon (urologist), my dad’s general practitioner, an oncologist, and a hospitalist (specialty?)) in my dad’s room at the same time (see figure below)!

coordination of care and patient advocacy

The “discussion” that occurred over the next twenty minutes was actually a series of questions being fired by me to the group followed by an answer by the doctor responsible for that part of my dad’s care.  What I thought would be a coordination of care, was actually four separate business representatives answering questions about their specific services.  The doctors didn’t contribute when the question “belonged” to another healthcare business.

Although my dad’s general practitioner was the “unofficial” coordinator for his care, since he was the doctor on record in the admission’s office, it was clear that the specialists controlled the care that fell within their respective areas of expertise. There was no questioning or clarifications allowed. The general practitioner contributed little to the discussion. The surgeon told us that the earlier surgery had been improperly performed, and he had to go in again to “correct” the bleeding problem. The surgeon who had performed the earlier surgery at Hospital A did not have hospital privileges at the current hospital, and could not present his contribution to the care equation. In addition, a complication during surgery had compromised my dad’s ability to swallow and he now had a feeding tube installed to eat. Worst of all, the surgeon found that the cancer had metastasized (spread) to my dad’s spine.

Over-Testing and Over-Treatment

Peppered during the seven day hospital stay was much over-testing and over-treatment designed for padding the hospital coffers.  When I told the hospital  staff that my dad was leaving the next day, they informed me that that was not possible because my dad was scheduled for mental health evaluation (“he seemed depressed”) and lung function tests the next day. They had “concerns” about both of these conditions and they had to be addressed before he left the hospital.  I was told that only his admitting physician (his general practitioner) could discharge my dad. Since it was Friday, I hurriedly called his general practitioner and told him to inform the hospital that my father was going home the next day. He resisted, and told me my father needed to stay longer.  After I let him know that my mom had signed the papers for hospice care, his resistance melted. I felt like I was arranging for a prison break.

Back then, I didn’t think to keep my mom’s Medicare EOBs (the only record she would have had for the week’s medical expenses) and these past records are not available to her online even today. I do not know the final cost for the hospital stay and care during this single week. Given the number of hospitalists coming and going, I am sure that over-testing and over-treatment was practiced. My “pushiness” stopped the mental health evaluation and the lung function test. My father was a captive in a healthcare system that would have kept him in the hospital until Medicare stopped paying.

 

Final Comments

I have replayed the scene in that hospital room (figure above) in my head many times over the past ten years, and I wish I had had some of the information available to me today for better “patient engagement”. I was very grateful for the honest communication that occurred between Hospital B oncologist and my mom and me.  His discussion served as the basis for the plan of action choices I presented to my mom (as shown in the figure below). He gave us the true picture of my dad’s prognosis and left the final decisions to my mom.

benefit risk analysis and patient advocacy

The benefit/risk analysis above is a simple one.  There were only two choices.  I did not include costs (I didn’t know the cost of chemo) but it is safe to say that hospice is a much less costly option.  After having the facts before her, my mom’s decision was to put my dad into hospice care and take him home the next day. Because the oncologist worked with the patient’s interest first, he made my job as patient advocate easier and was the ray of sunshine in this murky sea I call the “business of healthcare”.

From the moment my dad arrived home, the relief of being away from the hospital environment he hated was evident on his face. One of the first requests he made was to eat. We were hesitant because he hadn’t eaten anything by mouth during the entire week of hospitalization, but had been fed through the newly-installed feeding tube. To our surprise and delight, he proceeded to eat a huge quantity of food by mouth and seemed to enjoy it thoroughly. He experienced no problems eating whatsoever until until the cancer made eating impossible. My father was home and he was happy to be out of the hospital. He was in familiar surroundings with those he loved.  He died two months later having enjoyed his last moments with his family–not in an institution, as a collection of “parts” on which “billable” procedures could be performed.

The Bottom Line

The personal story I presented above was not meant to rehash a sad moment in my life, but rather to alert you to “healthcare business” practices that make patient advocacy critical for “best” healthcare delivery. Patients and/or their patient advocates should not have to “wrestle” for control and management of health care from a for-profit healthcare system whose goals may not always be in the “best” interests of the individual. Sickness is often a journey that can be made more pleasant when the coordination of care takes into account the needs and desires of the patient.

Although the experiences I described above are sadly etched into my brain today, I am grateful for the help I was able to provide for my dad as his patient advocate. During this end-of-life journey, my dad was spared being the collection of “parts” subsumed in a for-profit medical machine he so dreaded. I was glad that he had made his desires very clear to his family BEFORE he got very sick and could no longer do so.

While the details of this experience are ten years old, the circumstances of the story are not unique nor easily relegated to the category of “sins of the past”. The “business of healthcare” doesn’t reform willingly in a direction that might reduce revenues—structural changes need to occur to change the collective mindset that delivers the type of care situation I described above. What about people who do not have a loved one who can function as a “patient advocate” and cannot afford to pay for this service–who is looking out for them?

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