Dorothy Beale Snyder’s lifelong home in Freeport, Pennsylvania, was a house her father built: She was born there in 1926, raised her five children there, and lived there in good health into her 80s. Dorothy’s youngest child, Sally Jo Snyder, always thought that if her mother needed help with health issues, she would be able to provide it: An ordained United Methodist Church minister, Sally Jo works for a Pittsburgh non-profit that helps poor, disabled and elderly consumers obtain health care.
In March 2010, when Dorothy sought treatment for a skin infection, doctors ran tests and diagnosed her with myelodysplastic syndrome (MDS), a form of cancer in which damage to the bone marrow impedes production of blood cells. When Dorothy learned she would need weekly injections to build up her red blood cell count, Sally Jo anticipated some turf battles because Dorothy’s primary care physician (PCP) was in one health system and her blood specialist was in another "and the two systems are like the Hatfields and McCoys of the medical field." Coordinating care between those competing systems would be her biggest worry, Sally Jo thought.
Not for long. In May 2010, Dorothy began having disabling attacks of the arthritis-like condition called gout. "Mom was hospitalized for 10 days and doctors were running every test in the world on her — including some they just had run in March — like she was a guinea pig," says Sally Jo. Their conclusion: that the gout probably was triggered by the injections prescribed for Dorothy’s MDS. A rheumatologist — from a different health system than Dorothy’s blood doctor — was consulted about the gout, and prescribed a medication to treat it.
After Dorothy researched the medication, she told her children, "With MDS, I don’t think I should be taking that." When Dorothy asked her blood doctor about it, he agreed with her that the medication was contraindicated. "Then when I finally got the rheumatologist on the phone," Sally Jo says, "and I asked about the medication, the rheumatologist said, 'Oh no, with MDS that medication would be bad — who prescribed that?' And I said to her, 'You did!' She stammered around, and I said to her, 'Ma’am, I know you have the results of my mother’s tests, she had them done twice...' It was a comedy of errors. We got a new rheumatologist."
In late September 2010, Dorothy’s feet and legs became so swollen she had to use a cane to get around. Concerned that Dorothy might be in the early stages of congestive heart failure, her PCP suggested tests and observation, and Dorothy entered the hospital on a Friday night, Sept. 24. But the PCP’s practice no longer did hospital visits, says Sally Jo, instead "farming them out" to a practice of hospital-based doctors. Those doctors monitored Dorothy through the weekend, and told her family the swelling was down and that she soon could go home. "My brothers and I were in there Tuesday (Sept. 28) and I said, 'Mom, they’re going to spring you for sure.' She looked good and felt good."
On Wednesday when Sally Jo phoned her mother’s hospital room, a weak-sounding Dorothy reported she was having non-stop diarrhea: "I am just so sick, I’m wiped out." By Thursday, Sally Jo says, "Mom wasn’t eating or drinking and was getting really weak. I started asking the staff, 'What does she have?'" By Saturday, Dorothy still had diarrhea and was worried to see so much blood in it, given her MDS; Sally Jo says doctors dismissed her concern. On Sunday, Oct. 3, Sally finally reached one of the doctors in the hospital practice and pressed him for a cause of her mother’s illness. "He said that based on one test, 'We think it might be C. diff'" — a potentially lethal bacterium that often strikes older people in medical care settings.
Early the next morning, a friend who works in the hospital called to tell Sally Jo that Dorothy’s IVs and monitors had been unhooked and she was being readied for discharge to a nursing home. "I was astounded," says Sally Jo. Driving to the hospital, she placed incensed calls to the doctors and staff. Once there, she demanded that Dorothy — dehydrated and barely able to move — be settled back in bed. A short while later, Sally Jo says, "Two social workers came in and said, 'Mrs. Snyder, would you like to get up and try to walk?' And I said, 'You have got to be kidding! You want to check that off her chart and say she’s able to be transferred? She can’t even sit up in bed by herself, and she’s not going anywhere.'"
For hours, Sally Jo and Dorothy waited for the physician who had approved the discharge. While they waited, the re-installed IV malfunctioned, and Dorothy’s arm became swollen and sore. While they waited, Dorothy complained of intense back pain, and a doctor told Sally Jo, "It’s probably just these hospital beds." While they waited, a colleague of Dorothy’s blood doctor came in and when Sally Jo told him about the aborted discharge, “He literally said to me, 'You have to understand, this hospital is losing money.' So what does that have to do with the care my mother is getting?!"
When the attending doctor appeared at 4 p.m., Sally Jo says, "I had a list of questions, and he wouldn’t answer any of them. When I told him a partner in his practice had said a test showed C. diff, he literally grabbed me by the hand and took me out into the hallway. He said, 'Your mother is very sick. Her health is failing.' I said, 'Sir, it’s not her blood levels. It’s whatever she has caught in this hospital.' He said to me, 'Look, do you think I’d just discharge your mother to let her die in a nursing home?' And I said, 'Yes, sir, that’s exactly what I think you are doing.'" The doctor left without another word about discharge.
When a kidney specialist arrived in Dorothy’s room, "it was the first we heard of this development," says Sally Jo. Dorothy was losing kidney function — the reason for her intense back pain.
On Tuesday, Oct. 5, Dorothy was moved to the intensive care unit because, in Sally Jo’s words, "the bottom had fallen out." Her pulse was unsteady, she had fluid on her lungs, her kidneys were shutting down and she showed more signs of congestive heart failure. Sally Jo and her siblings arranged for Dorothy’s transfer to another hospital.
"The difference in the care and attention Mom got there was like night and day," Sally Jo says. Dorothy’s new doctors tried urgent measures, including dialysis to do the work of her failing kidneys. "But by the time we got her there, we were working against too much," Sally Jo says. On the afternoon of Oct. 7, Dorothy died.
"It’s a horror when you go through all this," says Sally Jo, her voice catching. "How dare they just try to get her the hell out of their system? All my family wants to do is say, 'This happened — and you don’t get away with treating people like this!' My mother’s life was far too valuable to have ended this way."