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ToTop-rankedospitals in the U.S. seem to be co-branded with a kind of hubris that spills over into the delivery of care, and the culture of the organization. My own experience over the past week and a half ran the gamut of sublime to ridiculous based on the performance of the various departments I encountered on this patient journey.
My 88-year-old father was the patient. He was not rationally conscious during his journey, and as his health care proxy, I was his advocate and was the recipient of the interactions with members of this well known, large institution.
I’ll get back to his story in a moment, but let me share with you what you find you visit this institution’s website. It is part of what I call the Health Care Industrial Complex.
When you arrive at their web landing page the three links that stare out at you are:
Find a Doctor
Pay a Bill
Follow MyHealth Patient Portal
Much of the real estate on this page is devoted to “Thank Your Doctor Day” by “making a gift in honor of a doctor who made a difference in your life.” I presume this was related to a health care event, not being a good neighbor, a mentor to someone in the community, or being a good friend.
Another part of the page says “You can make a difference. Make a gift. Your support drive breakthrough discovers that help us develop lifesaving treatments.” A link takes you to a page where you can donate.
Another part of the page is a rehash of “Thank your physician on Doctors’ Day.”
Located on the bottom third of the page is a list of programs, a map to find the facilities, and at the bottom of the page a phone number so you can make an appointment with one of the fine doctors of the institution. Not very patient-centered.
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Now back to my father’s journey. He’s been in a skilled nursing facility for four years following heart surgery at this very institution. I’ll lay the cards on the table and say that had he been proactive about his health in his early 80s he might have returned home following that surgery, but regrettably, it was not the case. Over the last year, he had onset dementia, a history of urinary tract infections, which accelerated his short-term memory loss. In the last 3 weeks, his condition had declined rapidly.
He was admitted to the hospital last Wednesday because the doctor at the nursing home wanted to find out if my father had suffered a stroke. He needed a CAT scan. I received a call from a doctor at the hospital saying Dad was stable. His heart had slowed to between 30 to 40 beats a minute and was suffering from AFib (atrial fibrillation). The doctor spent about 20 minutes on the phone trying to convince me that a 15-minute procedure to install a pacemaker was the best medical option.
Knowing my father’s diminished mental capacity, I knew we would be prolonging his life, but not his quality of life. His intellectual capacity would never return. He was unresponsive in the hospital, and could not answer questions from the hospital staff. I told the doctor I would be at the hospital the next day and would “make a decision” about the surgery.
My daughter and I drove the hour and a half from our home in Connecticut to the hospital on Long Island. While in the car I received a call from the hospital. It was a physician from the Palliative Care Unit of the hospital call to explain she had visited my dad and thought he was a candidate for palliative care.
I explained that I was driving to the hospital, could we postpone the call until I got there. The doctor, whose intentions were in the right place, failed to understand that having a detailed conversation about “end of life” should not occur when one of the participants is driving in heavy traffic on the Hutchinson River Parkway. I wrapped up the call quickly by agreeing that transfer to the unit was part of my father’s directives for no heroic efforts.
At the hospital, I saw my dad and he was not responsive to my daughter or me. He was in a deep REM sleep. The doctor who wanted to perform the surgery came by and we had a straightforward discussion as to why he was not getting a pacemaker and was going to a palliative care unit. It seemed to me that this physician wanted the “face to face encounter” (FFE) to cover himself. He agreed that palliative care was a better option.
While at the hospital we met with the nurse caring for him and the Nurse Practitioner. Both were empathetic and compassionate and understood the directives. Both spoke of the Palliative Care Unit where he would receive “better care.”
The next day I receive a call from the nurse who identified herself as Susan. No last name. I asked for her last name, and she reluctantly gave it to me. She was there to help in my dad’s discharge plan. She had just spoken to the doctors in the unit (he had not been transferred to Palliative Care) and wanted to discuss when dad would come home. It was apparent she was misinformed about his situation. Our conversation was short and to the point.
Me: You know he is being transferred to the Palliative Care Unit.
Susan: No.
Me: What is your role at the hospital?
Susan: I am his care coordinator.
Me: Well you apparently don’t know enough about his case to speak intelligently about it. Your job is to move him out of the unit so you can have his bed.
Susan: Well, that is part of it.
Me (interrupting): I suggest you go back and talk to the unit doctors, read his medical records, and get on the same page as everyone else. When you are up to speed call me back.
I terminated the conversation. I never heard from her again. I was enraged, upset, and not surprised by this encounter. Today’s hospitals are all about throughput. Patients are medical widgets that move the hospital assembly line emerging at discharge as positive clinical outcomes. Unless they expire.
Hours go by and I finally hear from a doctor. He is a fellow in the Palliative Care Unit. Dad has been transferred there and he is being made comfortable. While we are on the call I get another call from the hospital which I let go to voicemail. The doctor says they will observe his condition and I said that I would visit in the morning.
I returned the second call and reached Nancy, the nurse caring for my dad in the Palliative Care Unit. She didn’t realize the doctor had just called me and she explained that dad was now in a different room. She didn’t want me to go to his old room and not find him there. I told her we would be there in the morning. She asked how I was doing. She wanted to know if there was anything I needed.
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My wife and I visited the next day and saw that Dad was indeed more comfortable, still not responsive. The nurse explained his care. The doctors came by making rounds. We had a brief discussion about prognosis, but the doctor demurred that he hadn’t been in the unit long enough for observation to have any deep conversations about it. There was a TV in the room and we wrote on his whiteboard to please put the NY Giant football game on his TV at 1 pm the next day.
I arrived mid-morning on Monday as medical rounds were beginning, the medical director of the unit was leading an attending physician, a graduate fellow, a doctor interviewing for a position at the unit, a social worker, and Dad’s nurse, Amy, as they observed him and reviewed the case.
The medical director examined Dad, observed his discomfort, and prescribed additional meds on the spot. She asked me how I was doing, where I lived and if I had any siblings. She was very compassionate. I could tell that her staff members were also modeling those behaviors. I said that I lived in Connecticut, and immediately she wanted to know if we should look at a Hospice option for Dad in Connecticut. She promised that she would get back to me after rounds. She thanked me for respecting Dad’s wishes about not intervening with heroic measures. I did ask about discussing prognosis and she committed to having the fellow speak to me when rounds were completed.
There was a palpable difference about how medical care was practiced in that unit from the rest of the hospital.
As I waited a couple of hours for the Fellow to finish rounds, Amy came by several times to administer the medication prescribed by the doctor. Dad’s breathing was less labored and he seemed to be resting more comfortably. Amy wanted to know if I had any questions. She also asked how I was doing.
The doctor came into the room, and the first thing he said me was, “Tell me about your Dad’s life.” It was unexpected and comforting. As our conversation continued we moved to Dad’s prognosis. I think the doctor was thinking that I was looking for a timetable. I only want a range of time he had left. He explained that Palliative Care was not an inpatient Hospice unit and we would have to examine transferring Dad. Some patients remain stable for days or weeks. We discussed the option of relocating him to Connecticut, discussing the real possibility that he could die en-route to the Hospice. My point was that would not be death with dignity. We discussed more local options, either the inpatient unit in the hospital or a local hospice in Queens or on Long Island.
We talked about his decision to work in this unit, and about the care the nurses provided. He said with pride that the nurses really did the best work in the unit. He was glad to be a part of the unit.
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Early the next morning Dad took the decision to move to another unit out of our hands, by dying peacefully with dignity. His desire was to donate his body to science, and the social worker of the unit helped facilitate that process.
What I experienced was a tale of two cultures within the same institution. A cognitive dissonance of Patient Experience. Would providing feedback make a difference? Probably not. I doubt I could find anyone in the C-Suite that would want to talk about it. It would take too much of an effort, and I doubt that they would care. Doctors and clinician severely lack expertise in Patient Experience. It’s a chronic condition of indifference. Until they become a Patient.
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This post was originally published on LinkedIn and is republished here with permission from the author.
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Photo credit: Getty Images
Thanks for writing this article. The thoughts, fears, careening about in my head can’t be shared here; so, all I can offer now is thanks.