Today I want to tell you how I got into the business of Patient Advocacy.

Two years ago, when my 88 year old father became very sick with a raging urinary tract infection, after a
full day of work as a barber in Philadelphia, and walking 8 blocks to the Emergency Department, I was notified
in the middle of the night that my father was critically ill, was in end stage renal failure, and might not make it through the night. They also asked me to bring his living will if I had a copy.

When I got there at 4 in the morning, he was in Intensive Care, unconscious, wearing an oxygen mask, and hooked up to all sorts of tubes and monitors. When he arrived there at 6:00 PM the evening before after walking the 8 blocks, my father checked in with the clerk at the desk of the Emergency Department, complaining of a lot of pain in his lower abdominal area. He had been catheterized five weeks before because of urinary problems and a weak bladder, and thought perhaps that could be the cause of the pain. The clerk told him to have a seat and that it could be awhile before being seen since he was ambulatory and not in seeming danger. When his blood pressure dropped to 63 over 30 two hours later and he collapsed onto the floor, they finally reacted and gave him care.

I asked to see the Doctor, but at 4 in the morning he had gone home for the night and wouldn’t be back until 8 or 9. I asked to see the night nurse assigned to my father’s case. She told me that he had collapsed in the emergency department and they had transferred him to Intensive Care (ICU). They said he was still coherent for a little while with blood pressure so low. They were still trying to raise his blood pressure, and they knew he had an infection of some sort, but were still waiting for lab results to know for sure. They did know that he was septic and his kidneys were shutting down, which was not a good sign. They asked if I had his living will, which I did not. That determines how the staff will proceed in terms of heroic measures if the patient goes into an end of life crisis mode. The living will gives them the blue print, the advanced directive of what the patient wants.

I had been in marketing and sales at an executive level for the last 28 years in the health care industry, including diagnostics, pharmaceuticals and medical devices. My primary markets were hospitals, hospital systems and physicians offices, so I consider myself an expert on the way these markets behaved. I knew that the average person did not know how these places worked, so I always made sure that my parents’ care was coordinated with the best physicians (specialists) and the best hospitals.

My parents were under the care of the best cardiologists, neurologists, surgeons, urologists, Pulmonologists and Endocrinologists all with the same University Medical Center. My mother had rheumatic fever as a child, was a chronic smoker until she was 65 and overweight until about the same age, therefore she had the lion share of the health problems with heart disease, lungs and diabetes. Under great medical care and my scrutiny she lived a most productive and pretty healthy life until age 84. I’ll get into the discussion of switching their health care to better practitioners and leading hospitals in my next segment.

When the latest of my father’s specialists, the Intensivist, a little arrogant, with a bit of an attitude, arrived later that morning, I got a report that my Father was not doing well, that they were still having trouble raising his blood pressure, and they still didn’t have a handle on what they now believed to be a urinary tract infection. They had him on oxygen and were pumping him full of antibiotics. When I asked the Intensivist if he was going to consult with the cavalcade of Specialists my father had seen over the years there at that medical facility, he gave me a flat, resounding, “No!” I asked why not and he told me that it wasn’t his scope of practice. I asked him to explain his scope of practice to me. He said his scope of practice was to view the patient as presented and to stabilize him from that point. Once that was done, the patient would make progress and be shifted to a general medical bed, referred to surgery or discharged. I asked if consulting with the neurologist who treated my father for a mini stroke 3 years before, or the cardiologist who was currently treating him for heart arrhythmia, or the Urologist who had catheterized him five weeks before, or consulting with the Retail pharmacist who knew all his medications might be of value. He said it would be of great value but that wasn’t his scope of practice.

Now here is the difference between 98% of the population and someone who has some knowledge of the healthcare system and how it works. The average person would take that resounding “No” and its explanation as the final word and let that unknown doctor treat the patient anyway he wants. And that’s the way it ALWAYS happens. A loved one comes to Emergency Room as the result of a heart attack, a stroke, or some serious accident. The patient is triaged, sometimes after an ungodly wait, sent to emergency surgery, the ICU for stabilization, a general medical bed for observation and consultation with the patient’s regular physician, or treated by the Emergency room physician for things like stitches and discharged. And you, the average Joe, are asked for very little input and receive very little explanation.

In the case of my Father, I knew all of my father’s physicians who had ever seen him and treated him and were either recommended by other Physicians or the Administration of the University Hospital. I did not know this Intensivist. He wasn’t recommended to me or my father, and I certainly didn’t like his attitude at the onset. I explained to him that his practice would change from this point on, at least where my father was concerned. I phoned his cardiologist, his neurologist, and his urologist and asked them to consult with the Intensivist on this case. Initially they objected and said that wasn’t the way it worked for a patient in ICU. When I bluntly asked for an up and down vote, with the threat of calling my attorney next, they all agreed to consult with the Intensivist on my father’s history, and they all consulted on a course of action for my father’s treatment and recovery. I also had the Retail Pharmacist whose pharmacy was where all my father’s prescriptions were filled consult with the clerk of the Intensivist so he had a complete understanding of all medications my father was taking and WHY!

As I researched further as to the “scope of practice” in hospitals I was absolutely floored on the reason why no one consults with one another. It has nothing to do with patient care; it has to do with money and reimbursement. There is one fee for a patient, and the attending physician in the Intensive Care Unit is the Intensivist. The Intensivist has no interest whatsoever of asking other specialists of the patient to come in, for fear of losing part or all of that fee. It’s totally ridiculous. But the threat of a law suit versus loss of a payment seemed to work wonders on my father and wonders on changing his prognosis from a 30% chance of survival to a full recovery and that is when I realized our current system of healthcare is totally lacking Patient Advocacy. At that point I made my family’s health my top priority and I didn’t care what roadblocks were there to prevent the best care that could be provided – physicians, hospitals, insurance companies, alternate care providers – that I would figure a way to work within the confines of the system and get the best care available for my family members. As I continue this blog, I will tell you how every family member needs to have a dedicated patient advocate. It doesn’t matter whether you have an aging parent, a sister, a brother, children, or a spouse. You need a patient advocate who knows where to go when artificial road blocks are put up, when totally false information is given, how to ask many many questions and get many relevant answers, or when dealing with arrogant people, or idiots in the system who are nothing more than a clerk or a gate keeper, armed only with the word “NO!”

By the way, my now very healthy father turned 91 last month, still lives independently in his home, drives himself to his physicians’ offices and shopping, and my inspiration me to start a business around these phenomena of Patient Advocacy and Aging in Place.

Harry Fini
LifeSaver Living Solutions
www.LifeSaverLivingSolutions.com