Take to the Streets - Lessons from Teachers

Reflection on Teachers 2

Michael Moore's new film "Sicko" will hopefully bring to a wide audience the inequities in our healthcare system, but it will take all of us to change this unfair system. The Teachers with whom I spoke and who I've been writing abouton this blog encourage us to take action. One of the purposes of listening to their stories and the stories of others is to jog our memories so that we remember our stories and revisit them with a new perspective that leads to hope and action.

The Teachers’ stories reminded me of the time when I “took to the streets” to get adequate care for Ron my first husband who had ALS and lived on a ventilator for seven years.. At the time I was not aware of my ability to stay focused and refuse to be set aside by a medical establishment and the insurance companies that were not interested in our dilemmas. As I come back to this story I realize that during that time I learned in my bones the connection between the personal and the political—not a theoretical understanding but a connection made because it was directly connected to Ron’s life and death and to the life and death of many others. Let me tell you the story.

As we attempted to keep up with the progression of Ron’s illness, manage his nursing care and the quality of his life while balancing Ron’s needs with the needs of the rest of the family, we had a serious financial problem. Ron was told by his employer, Hewlett-Packard (H-P), that after being at home on the ventilator for one year, he had used up his lifetime maximum medical coverage on their private medical insurance plan. As an employee, he had an option to enroll in another plan, but they were doubtful that anyone would provide him with home care.

We had to shift all our attention to the economic demands of Ron’s care. In a panic, I asked the group of friends with whom I had been meeting to help me figure out what medical insurance options were available for Ron. The group responded by sending a letter out to fifty people who knew us and were concerned for our well-being. The letter included a report about Ron’s health care options.

With this letter, the Pulleyblank Trust was born. Its purpose was to keep Ron at home by getting him medical insurance that covered his twenty-four-hour nursing care. If that effort was unsuccessful, the Trust was committed to raising money to keep him at home. The Trust started out with twenty friends and family members. By the time Ron died, more than five hundred people had participated in the Pulleyblank Trust.

We decided that Ron’s best insurance option was coverage by Kaiser, a Health Maintenance Organization (HMO). As an H-P employee, Ron had the right to transfer to the Kaiser plan. Kaiser’s written policy was unclear about how many hours of home care they would provide, but it was the best coverage available to him. Under Home Health Services it read: For members without any Medicare benefits, skilled nursing services on a part-time or a part-time intermittent basis as prescribed by a Plan physician are provided without charge in the service area.

Soon after we signed up with Kaiser, I called the home care supervisor and asked her how we should we proceed. She called me back after a few days.
“Mrs. Pulleyblank,” she said, “your husband will have to come into the hospital so that we can assess his situation.”
“But that’s impossible,” I responded. “Do you realize that he has been living at home on a ventilator for a year? Putting him back in the hospital doesn’t make sense. Why can’t someone come out here and do the assessment?”
“Mrs. Pulleyblank, the rules state that home care is only available for patients who are currently hospitalized. If your husband is to be considered for home care, he must be in the hospital. If he stays at home, he will not be eligible.”

I was desperate. Using my most professional tone I explained, “Ron hasn’t had an infection this entire year. If you insist that he come into the hospital, you place him at a risk for pneumonia. You are suggesting that a man with a serious illness like ALS, who is doing well at home, should be put in the hospital to assess if home care is appropriate, and you may kill him in the process.”

I was sounding less professional by the minute. The home care coordinator didn’t notice one way or another.

“Mrs. Pulleyblank, those are our rules. Will Mr. Pulleyblank be coming into the hospital?

This was another one of those moments. A decision had to made, no
reasonable choices were available, and so I just proceeded.
“He will be there on January first.”

When Ron went into Kaiser Hospital, I went with him, determined not to leave his side. He caught pneumonia within twenty-four hours. As we had predicted, the change of environment and the many strains of bacteria in the hospital were too much for his fragile system. He went from living on life support at home to almost dying in the hospital because of an administrative rule. In addition to pneumonia, his life was at risk because the nurses on the ICU had difficulty monitoring him on the ventilator. He had no way to signal when he needed them. More than once, I entered his room to find the alarms on his ventilator ringing and no one responding. I tried to keep calm and explain to the staff what Ron needed. They only half-listened to me.

One night during the first week, when I had stepped out of the room for a few minutes, a nurse turned Ron’s ventilator off by mistake and left the room without turning it back on. He would have died if I hadn’t returned when I did. That night I lost control. I started screaming and crying.

Someone rushed in to see what was the matter and led me into the office of the head nurse. I couldn’t stop shouting. I was hysterical. I told her about all the things that had happened. I was shaking with exhaustion and fear. She sat with me until I calmed down, listened to my complaints, and said that she would look into the matter. From then on, Ron got excellent care. It took me almost losing my mind, but we were finally taken seriously. It was clear that in what we were facing, rational discourse would not do. I hated getting upset, but it gave me courage to speak out in a much louder voice as we continued to face insurance obstacles
Ron’s infection was cured, and the wheels of Kaiser’s home care committee turned.

After three weeks, Ron was allowed to return home with a prescription for twenty-four-hour nursing care. Kaiser said that they would provide twenty-four-hour care if Ron chose to stay in the hospital, but because we were choosing home care, they would provide only two shifts of nursing or sixteen hours per day. We were responsible for the third shift. Luckily, I had Blue Cross insurance through my employment at Children’s Hospital at Stanford. My policy would cover the third shift for 200 days a year. We turned to the Trust and our families to find the added money that we would need for the other 165 days. We again had a plan in place, but it wouldn’t last long.

Each time that we developed a working home health-care plan, I believed that this new system would last. I craved stability in this time of chaos, and I felt that if I did things “right” I could stabilize my life and the life of our family. Yet our plan kept unraveling.

Ron and I had believed that the doctors, insurance companies, and employers would help us in a medical crisis. The truth was that the representatives of these institutions looked to me to solve our problems. Each group had their set of priorities. None of them saw Ron’s need for home care as their responsibility. In order for Ron to live at home, we had to alter our perception of the problem, to see home care for a catastrophic illness as not our personal problem but a societal problem. Ron’s health needs raised the larger question of who was responsible for care if the medical choice to live on a ventilator was offered to someone with a terminal illness. If as a society we decided that this was the “right” choice to offer patients, didn’t that imply that adequate care had to go along with it?

But no one addressed this question. Instead, physicians, nurses, medical insurers, and employers made independent decisions that left people like Ron alive but without adequate care. This left me with few choices and a confused sense of responsibility.

Keep Posted. More about this to come. If any of you are currently fighting for health care let us know your stories.