OP-ED: Everyone deserves patient-centered care
It was September of 1974 when my 57-year-old father’s cough was diagnosed as lung cancer. He had stopped smoking 14 years earlier, and none of us were totally cognizant of the ramifications of his previous environmental exposures. All we knew was that a great person and father had been given a death sentence.
Ironically, our 74-year-old neighbor was diagnosed with lung cancer on the same day. The health care paths that these two very different men from varying ends of the socioeconomic spectrum pursued on their terminal journey are notable and ironic.
My father did everything available in medicine in 1974-75 to arrest this disease and regain his life. This meant surgical removal of the lung, radiation, chemo and, near the end, lots of morphine. He spent 18 months in hell with metastases to his spine, kidney, and finally the other lung. It meant intermittent, unbearable pain and total disruption to life, as we knew it.
It was during the 18-month journey from his good health to horrible death that we had our first real experience with the then health-care system. It was a world that, at the time, was cold, sterile, insensitive and parochial. Each journey into the hospital required leaving your dignity at the door. It was like entering a negative pressure chamber wherein questions remained unanswered, rudeness was acceptable, and no one knew or was willing to find out what was going on at any given moment. A total lack of control quickly became the norm for us. Unfortunately, it only grew worse as death, the ultimate failure in modern medicine, grew closer.
As my father’s health deteriorated, we were all stunned by the lack of care that he received. We were crushed by the lack of sensitivity demonstrated toward both him and our family. Once it was clear that his death was imminent, the health-care providers began to avoid the room. They avoided bathing him and speaking with us. It was a horrible journey into a system that, 45-plus years ago was well-funded, well- staffed, and even then was on its way to becoming one of America’s largest employers. Unfortunately, all these years later, many of these realities still exist.
Our 74-year-old neighbor, on the other hand, had no health insurance and decided to have no treatment for his lung cancer. After living comfortably at home with his entire extended family surrounding him through 18 months of nurturing, loving care, he died.
Ironically, these two men died on the same day.
My father went through the torturous treatment provided by the health-care system. He was cut, poked, prodded, poisoned, radiated, drugged and ignored.
We nearly depleted our family savings trying to be near him, attempting to stay by him at the tertiary care center two hours from our home.
But they died on the same day. For Charlie, no clergy, social workers, or counselors were available. Our neighbor was surrounded by all of them. He died ensconced in the love of his children and grandchildren, and unhampered by the negative attitudes of unhappy, overworked caregivers and physicians trained in the white coat world of high-tension, high-stakes medicine.
Once we understand the majority of health care evolved from war, from the military, and from extremely insensitive roots, it makes sense. When we hear about the difficult, sometimes cruel, Socratic grilling and blaming that many medical schools still employ, that answers plenty of questions as well.
Consequently, when I entered health-care administration, all of my experiences delineated above filled both my heart and my brain as I attempted to lead a movement that would humanize and move health care into a new generation of nurturing, patient-centered care. It was my goal to create a healing environment where, even the terminally ill had refuge from pain and a loving, caring staff that ensured peace and caring during their stay. We had the first rural inpatient hospice in the United States. Everyone deserves patient-centered care.
Nick Jacobs of Windber is a health-care consultant and author of two books.