Teachers show us how to stand up in opposition to injustice

Reflection on Teachers #3

As we continued to try to find a way to keep my husband Ron at home on a ventilator complex legal battles began. A friend introduced me to Bob Lubin an attorney who became our champion, pro bono, for four years. Working with our friends in the Pulleyblank Trust, we developed strategies for addressing the inequities in home care and raised money to keep Ron at home until our legal battles were won.

Ron wrote directly to Mr. Hewlettt and Mr. Packard, the founders of H-P. Neither responded. Through Ron’s human resources representative, Bob requested nursing care during working hours as a “work force accommodation for the handicapped,” a benefit written into the Disabilities Act. This was considered by H-P as an excessive accommodation, even though Ron was still an active member of his team at H-P Labs. H-P also briefly considered providing exceptional health benefits for Ron but decided against it. Ron had a final and unfriendly meeting with a corporate vice president. He was coldly rebuked for having gone over their heads and written directly to Hewlett and Packard. This was not the H-P way. H-P sided with Kaiser. Ron was told that in similar situations, it had been the spouse that provided care. They shut the door in his face. The image of H-P as a big family, loyal to their employees, headed by founders who cared, did not apply in this precedent-setting situation. It would cost the company too much money. Like most companies, H-P’s eye was on the bottom line.

We looked at the possibilities of Medi-Cal, Federal disability, or California state disability. None of them applied. Medi-Cal allowed recipients to keep their homes, but not have an income over $12,000 a year, a figure too low to pay the mortgage. Ron didn’t qualify for disability because he worked half time at home and therefore wasn’t considered disabled.

With Bob’s help, I took on the battle with Children’s Hospital at Stanford my employer who dropped my contract due to Ron's need for home care and Blue Cross my insurer which had been providing us with one shift of home care a day. After months of calls, letters, and meetings, Ron was awarded two hundred more days of care. It was worth every minute of anxiety it took to make the system provide what we deserved, but it was now clear that we would have to continue to fight for Ron’s care after those two hundred days were over.

We increased our fundraising efforts and sent letters asking for money to a wider circle of people. We raised money, but this also raised our anxiety. Ron and I were embarrassed about asking for money. My parents shared our discomfort and discouraged us from going ahead with a wider campaign. They gave us the money they could, but my mother was ill, and they had limited resources. They were unwilling to ask people they knew for money. They believed that such a request would be humiliating. Once again, we faced the question of our responsibility as a family. Ron had a catastrophic illness, and the medical establishment believed that putting him on a ventilator was a viable choice. We had chosen the ventilator, but we didn’t have the means to sustain him at home without the help of the wider community. We wondered what rules applied in this situation. Should we sell our house? Should I quit my job? Should the girls come home from college? Should we ask people of wealth to help us? Should Ron be institutionalized? Should he turn off the ventilator before he was ready? Everyone we knew, other than my parents, put out the word and asked friends and family to contribute to the Trust. People wanted to help and over the years we raised more than $100,000.

When there were only a few months left before we would lose the third shift of nursing and we were scrambling for money, Bob Lubin decided to sue Kaiser, Ron's health care provider who at the time were paying for two shifts of nursing a day. As an HMO, the Federal HMO Act regulated Kaiser. Unlike other laws, the HMO Act was clear. It stated that HMOs were required to provide medically necessary treatment without regard to time or cost. Kaiser doctors had prescribed twenty-four-hour skilled nursing care for Ron. How could they refuse to provide it? All the doctors involved agreed that home care was the treatment of choice. Due to Ron’s condition, he was at a high risk for pneumonia (the only two times he got pneumonia were when he was hospitalized). Hospitalization would put his life at risk. Kaiser argued that the benefit was twenty-four-hour hospitalization. Home care was only available as an alternative to hospitalization. If the family wanted the patient at home, it was up to the family to provide the additional eight hours of care.

In addition to the Federal HMO Act, there was a California law that stated that patients should be put in the least restrictive environments available. Clearly home care was less restrictive than hospitalization.
Bob filed a class action suit in federal court in California on March 20, 1990. On August 24, 1990, with Judge J. Vukasin Jr. presiding, the case was dismissed on the basis that Ron did not have a private right of action to enforce “the basic health services” provision of the federal HMO Act, and that only the federal government had that right. But the game was not over yet.

In Washington, a non-profit agency, the Center for Health Care Law, headed by Jim Murray and William Dombi, had been trying to get home care for other patients in other parts of the country. When they heard about our case, they offered to get involved. They recommended that Bob file a grievance with the federal government, and we ended up suing the government to force it to enforce its own regulations. The government finally agreed with us in March of 1992 and directed Kaiser and all other HMOs that they must provide twenty-four-hour skilled nursing care if that were medically necessary, regardless of cost. We had won the battle but not the war. The federal department that managed the HMOs now had to make Kaiser comply, but in Ron’s case they agreed with Kaiser’s claim that the original prescription was not for home care, but for twenty-four-hour skilled nursing care, and that Kaiser had been willing to offer that in an institutional setting.

As is often the case, each legal decision only makes a small change. It was gratifying to know that, due to our suit, federally funded HMOs were fully informed of their responsibility for home care under the law. Kaiser responded by setting up a home care assessment system that included the option of twenty-four-hour home care. It was devastating, however, to realize that this decision might not help Ron.

Now that we had the federal regulation to stand on, we filed a new suit against Kaiser in California state court on May 4, 1992. The doctor who had written the original prescription for twenty-four-hour care was no longer working for Kaiser. We tracked her down in Seattle. She wouldn’t testify for us, but she would write an affidavit stating that her prescription had been for twenty-four-hour home care. We were back in court with a much stronger case, but the legal process was not fast enough. The progression of Ron’s disease would not wait for the legal system to respond.

While we were fighting Kaiser in court, Ron began to think about turning off his ventilator. His health was deteriorating fast, and only I and one other nurse could understand him. In September of 1992, with me as translator, he began a series of conversations with family, friends, and doctors that led to turning off his ventilator on January 13, 1993.

Months after Ron’s death, Kaiser offered to settle with us out of court. Bob Lubin wanted me to continue the battle in court, but I was exhausted, and I decided to stop the fight and get on with my life. Kaiser paid us $30,000, which I split with Bob. The amount did not come close to our expenses, but it was an acknowledgement of their responsibility.

I have been told that the case has had lasting effects on Kaiser’s care of patients with catastrophic illness. It set a precedent in federal court on which other cases have been built. Over the years, I have worked with many families fighting for health care. I coach them in how to stand up for their rights. When I think about those hard years, it is our fight with Kaiser that I am most proud of. It is Bob Lubin and the members of the Pulleyblank Trust to whom I am most grateful. The disease won out, but our efforts kept Ron at home until the end and changed home health care for many others.

The Teachers I interviewed took me back to my ability to act even when I feel that all the odds are against me. Teachers come into our lives in many ways. Sometimes we read about a famous person who inspires us. Or perhaps a circumstance in our life pulls us out of ourselves toward others with a similar plight. Listening to these stories of resistance is only the first step however. We have to use those stories for building our own platforms for action.