Rita is only in her 30s, but she knows all about death. What she didn’t know until recently is how expensive it is, especially now in the Great Recession, for the poor to die.
Rita’s parents, her only relatives in the U.S., died in a car crash during her sophomore year in community college. Rita dropped out of school to earn a living as a shipping coordinator at a Bay Area package company. A few years later, she found herself coughing and coughing. She was always short of breath. Tests revealed that Rita had a rare and fatal disease of unknown origin—one that leads to the slow closure of the blood vessels feeding the lungs. She will suffocate to death before the age of 40.
“I know the end is coming,” she tells her doctor and nurses; after many meetings with her chaplain, she is, she says, “at peace.” At the medical clinic in San Francisco’s General Hospital, Rita tells anyone who will listen that she has two goals. She wants to continue living with her cat in her one bedroom apartment in the Mission District of San Francisco. And she hopes to continue receiving the few medications that mitigate her symptoms.
There are currently more than 1.2 million Americans like Rita who are facing a terminal illness. The health care providers who treat them routinely have to ask: How do you wish to die? Some of the dying—wanting to keep death at bay—repeatedly ask to participate in the latest pharmaceutical trials. Others have drawn up a “bucket list” of adventures for their final days. But more people have two simpler requests: to die at home instead of in a hospital, and to eat a decent last meal.
In this recession, even these simplest last wishes have become nearly impossible for many to fulfill.
Two years ago, Rita fainted on the job. Her boss had noticed her diminishing level of performance; he said that Rita was just too winded to work. Unemployed, she initially received disability coverage. But like the other eight million Americans unable to work because of illness, she was required to apply for a continuation of benefits after one year.
Rita’s problem—the clinic’s social worker explained—is that like most young people who are ill, Rita is dying too young to have paid significantly into Social Security. This meant Rita would receive “Supplemental Security Income” (SSI): $830 a month and California’s Medi-Cal insurance.
Initially, Rita thought she could stretch these funds. She would have to give away her cat and move into a studio apartment—something smaller and cheaper than the average studio in San Francisco. She would also buy food in bulk, saving at least $200 a month for her prescription co-payments.
But the politics of budget cuts stifled her plans. Over 65 percent of SSI claims have been denied during the recession, a record high number. A series of the governments reviewers of her case interrogated Rita, and one without any medical training misinterpreted her medical chart. Despite the fact that Rita had “pulmonary arterial hypertension”—severely increased pressure in her lungs—he wrote that Rita suffered from run-of-the-mill high blood pressure. Rita was denied.
The clinic’s social workers tried to intervene. They were told that Rita would now have to wait for an “appeals hearing” after 90 days—possibly longer that she had left to live. She would be without income for her last months of life.
Due to new state budget cuts, Rita’s Medi-Cal coverage was also limited to six medications. Her doctors had to decide which pills they could take away without suffocating her immediately—a deadly guessing game since there is not enough research to guide doctors in forecasting a regimen.
When clinic workers discussed the dilemma, Rita joked: “I should have been a banker instead of an ordinary taxpayer. Then I could have been bailed out.”
Rita lost her apartment. She slept for a few weeks on an ex-boyfriend’s couch, until he threw her out, suspecting her cough was from an infectious disease. She had signed up for welfare, at the usual rate of $422 per month plus food stamps. But without an address, the only way to get a roof over her head was the City’s “care not cash” program for the homeless—$59 a month, and a shelter bed.
Rita’s inhalers were stolen on her first night in the shelter. Her shoes were stolen on the second night. So she began to sleep in the parks, her symptoms worsening. Finally her doctors convinced her to check in to the hospital.
In the hospital, Rita was stoic. Her face had assumed the tough sheen of ceramic.
When a social worker asker her whether she would be willing to modify her plans, let the clinic find her a hospice bed, Rita said she had written it all down. She couldn’t discuss her thoughts with any more clarity. And besides, going over her problems would only make her cry. And crying made it difficult to breathe.
Editor’s Note: This story was written for New America Media as the first in a series of columns by Dr. Sanjay Basu called A Doctor’s Word, exploring the impact of the recession on health care for poor people. It appeared in the San Francisco Chronicle’s Insight and on SFGate.com. Sanjay Basu, MD PhD is a resident physician in the Department of Medicine at the University of California San Francisco.