The kitchen isn't big to begin with, but it seemed even smaller than usual on the dreary Sunday night last January when the kin of Mable Tubbs Johnson all crowded in for a family meeting.
Clumped around a rectangular table neatly laid out with polished silverware and empty plates, Johnson's clan sat quietly or stood with folded arms waiting their turn. They'd come to this tidy brick house on Detroit's east side to piece together the story of their mother's last days. Some choked back tears, others tensed with anger. But they pressed on, offering up vignettes in sequence as the telling passed from one sibling to the next. "Every time something happened someone from our family was there," explained Terry Tubbs, 38, one of Johnson's 12 children. The problem was, they didn't have a shred of evidence to support allegations that two of Detroit's largest health care corporations were covering up "gross negligence" that led to their mother's death.
But over the past year, the family has been acquiring evidence in an attempt to prove their claims, building from a single ambulance report to voluminous hospital charts to a critical state investigation. Following the records came formal complaints, filed with state and federal agencies and placing on the official record allegations the family has been making at weekly public protests targeting Henry Ford Health System (HFHS) and the Detroit Medical Center (DMC).
The other side in this issue has remained largely mum. Neither of the nonprofit health care corporations would answer questions for this article, citing the family's plans to sue both institutions.
"Given these circumstances," responded HFHS in an unsigned fax, "we feel the legal process, rather than the media, is the appropriate forum for debate."
The family disagrees. They say the public needs to know what happened so that others might be spared the fate of their mother. As the children of Mable Tubbs Johnson prepare to mark the one year anniversary of her death this Friday, they remain committed to telling their story
It begins with a ringing phone.
The first warning
"The call came right around 7, when I was getting my kids ready for school," says Theresa Ann Phillips.
A 41-year-old mother of four and the wife of a Pentecostal minister, her anger burns close to the surface as she recalls the morning of Sept. 26, 1997.
"I remember the date for sure," says Phillips, "because it is my son Robert's birthday."
On the other end of the line was a worker from the Northwest Detroit Dialysis Center, a facility on Outer Drive jointly owned by the Henry Ford Health System and Detroit Medical Center.
A call bearing bad news could have come at any time. Mable Tubbs Johnson was not the picture of health. At 60 years old, she was drastically overweight -- standing only 5-foot-1, yet tipping the scales at 230 pounds. Her obesity only threatened to compound all the problems that can come from living with diabetes for 30 years--problems including damaged kidneys that, beginning in 1996, left her unable to filter the toxins and impurities that accumulate in the blood.
So she started making the journey to Outer Drive, where three mornings a week she would be connected to a dialysis machine that cleaned her blood and allowed her to live an active life.
Which, by all accounts, is exactly what she did.
According to her family, Johnson didn't let the medical problems keep her down. Twice a widow, she continued playing a big role in the lives of her children, grandchildren and great-grandchildren. She also remained active in her church, running its kitchen, performing charity work, singing in the choir, heading one of its social clubs.
Like her sister Alberta Parran said, "Mable was always doing."
Until the early morning of September 26, 1997.
"It was someone from the dialysis clinic that called, saying there was a problem," recalls Phillips. "We had a rule. If anything ever happened to Mama, she wanted all her kids notified. They had a list with all our names and phone numbers."
Phillips was the first rung.
"This lady from the clinic told me that my mama was 'Code Blue' and I ask, 'What does that mean?'"
It meant she was in danger of dying.
"I ask, 'What happened?' And that's when she told me about the cleaning solution being in the dialysis machine. I say, 'What are you talkin' about? What cleaning solution?' Because I didn't know nothin' about that. That's when I hear the word 'formaldehyde' for the first time."
Phillips has subsequently filed numerous complaints alleging a formaldehyde accident had occured.
The fluid morticians use to embalm the dead is also used by Henry Ford Health System and many other dialysis clinics nationwide to disinfect equipment. With patients whose immune systems have been weakened by kidney conditions, it is imperative that dialysis machines be kept clean of infection-causing bacteria. But the formaldehyde can pose a deadly risk of its own if not properly monitored and thoroughly rinsed from equipment before use.
Officials at Henry Ford, which along with the Detroit Medical Center co-owns the Outer Drive dialysis clinic, insist that whatever happened to Johnson that morning, formaldehyde was not involved.
But there's no doubt something did happen minutes after her dialysis treatment began.
"I just started burnin'"
At 7:13 a.m. -- more than a half-hour after clinic personnel realized there was a problem -- an ambulance was summoned to the clinic where paramedics found Johnson sitting in a chair suffering from a "burning sensation" in her chest and neck, according to a report medics filled out at the scene. Clinic personnel had already administered Benadryl, which is used to counteract reactions of the type Johnson appeared to be having. And it was working: The manic heart rate fell, and her blood pressure had begun returning toward normal. Even so, 25 minutes after the ambulance arrived, Johnson was at the Sinai Hospital emergency room.
Phillips wasn't far behind.
"I said 'Mama, what happened to you?' And she says, 'They plugged me up to that machine and I just started burnin'. All of a sudden I couldn't breathe. I was burnin' inside, burnin'."
Out-of-state kidney specialists interviewed by the Metro Times said it's possible Johnson suffered an allergic reaction of the type dialysis patients sometimes experience.
Until recently, the family could not produce the name of anyone at the clinic who would verify their story. But in a new complaint filed with the Michigan Department of Consumer & Industry Services, Phillips specifically names a clinic nurse she claims "confessed" to her that a formaldehyde accident did occur, and also named the person she said was responsible.
An October letter from state officials to Phillips states that they are continuing to investigate.
Questions of cover-up
Records show personnel at both the clinic and hospital at least considered the possibility of formaldehyde the day Johnson was rushed to Sinai.
Documents provided the Metro Times indicate the first person to examine Johnson at the Sinai emergency room specifically requested a blood test be conducted to determine if the chemical was present. However, that order appears to have been crossed out by another doctor further up the chain of command.
Complaints filed by Phillips allege other discrepancies as well.
Henry Ford officials say that tests done on fluid taken from Johnson's dialysis machine that morning prove formaldehyde was not present.
The family remains unconvinced. In complaints filed with state investigators, Phillips alleges that numerous actions have been taken by clinic staff as part of an attempted cover-up, including the forging of Johnson's signature on documents and the transfer of a clinic worker to prevent her from being interviewed by investigators.
Phillips also posed serveral questions, including: Why was the dialysis machine not sequestered after the accident? Why were blood lines thrown out? Why was Johnson's blood sample analyzed by the same lab that also owned the dialysis machine?
No answers have yet been provided.
Two weeks after being rushed to the hospital from the dialysis clinic, Mable Tubbs Johnson underwent quadruple bypass surgery in an attempt to repair her heart. What caused the damage can't be known for certain. According to attorney Michael Heilmann, who represents the family, crucial X-rays taken prior to the heart surgery are missing from Johnson's file.
What is known is this: Ten days after heart surgery, Johnson was deemed well enough to be released from Sinai, one of eight hospitals owned by the nonprofit Detroit Medical Center.
"After her surgery, when they let Mama out of the hospital, she came home to me," says waitress Karol Tubbs, 42. "We brought her in and sat her on the bed. Then I went out to the kitchen. When I came back, the side of the bed was all wet. I said, 'Mama, what happened? Did you wet yourself?' She say, 'No, it's from this hole here.'"
Karol Tubbs says she almost retched at the sight. The hospital, Phillips claims in one of the numerous complaints she's filed with the state Department of Consumer and Industry Services, had sent Johnson home with an open, oozing wound on her left leg, where a graft for the bypass surgery had been taken. The family wouldn't learn until later that Tubbs had contracted vancomycin-resistant enterococcus, a potentially deadly infection almost immune to antibiotics.
Hospital records state that the infection was contracted while Johnson was at home.
Her family insists that's not true.
There is, however, no dispute of Karol Tubbs's assertion that her leg wound was draining significant amounts of fluid the day she was discharged, or that she had an elevated temperature, often a telltale sign of infection. Both facts are reflected in the hospital records. According to complaints, records also indicate no antibiotics were prescribed when Johnson was released. In documents provided to Henry Ford and DMC as a precursor to a medical malpractice lawsuit, it is alleged the infection was acquired at Sinai Hospital and that staff there failed to treat it appropriately. Those allegations are also made in complaints filed with the state.
This much is certain: Four days after being released, Johnson was suffering an infection so severe it sent her back to the Sinai emergency room.
On Oct. 17 she was admitted to the hospital for the last time.
Mable's final days
By November Johnson was fighting for her life. Her infection was considered so dangerous that she was put into a special isolation unit to prevent it from spreading to others. Family members describe hospital staff "yelling" at them for coming out of the isolation unit without first removing their protective gowns, gloves and foot coverings.
"We thought we were wearing that stuff to keep Mama from getting an infection from us," explains Anthony Tubbs,40. "We didn't know that it was to keep us from getting what she had."
It was during this time, when different family members would spend hours lifting their mother's spirits by singing to her, that Theresa Phillips, according to complaints, says she saw the white flecks of maggots amidst the blackened and stinking flesh of her mother's infected leg wound.
"I smelled something bad, then looked down and said, 'Jesus, what is that!' Then I went outside to talk to the nurse, so my mother wouldn't hear."
Twice, according to hospital records, Johnson underwent a procedure termed "debridement," defined as the "cutting away of dead or contaminated tissue from a wound."
That complaint and others describe what lawyer Heilmann calls "the cascade of negligence that caused the death of Mable Tubbs Johnson."
Phillips, unlike her 11 brothers and sisters, is not part of the legal action. She explained back in January that she wants to make certain that someone in the family retains the right to speak out. "Sometimes judges will put a gag order on people," she explains. "I don't want that to happen to me."
Her brother Anthony, a 40-year-old roofer who is party to the impending suit, claims presence at two particularly disturbing incidents.
The first occurred in the early morning hours of Nov. 19. According to Anthony, who lives only a few minutes from Sinai, he received a frantic call from his mother around 3 a.m. He raced to the hospital to find Johnson still struggling with the nurses.
She'd thought the medication was casuing her blood pressure to drop during dialysis treatments, and she was refusing to take it.
When the nurses refused Johnson's requests to phone her primary care physician to resolve the matter, Johnson gave Anthony the doctor's home number. He says, "She knew it by heart."
When the family finally obtained Johnson's records from Sinai, there was indeed proof that something unusual occurred the morning of Nov. 19.
A file entry from the doctor confirms that she was called at 3 a.m. She states, however, that Anthony obtained the unlisted home phone number by calling her answering service and posing as a doctor.
She makes no mention of any question about proper medication, but does note Johnson was refusing to take her pills. That same day, according to hospital records, the medication's dosage was reduced.
The doctor also described Johnson as "paranoid" and subsequently placed her on Haldol, a powerful antipsychotic medication.
The second incident Anthony Tubbs recalls occurred three days later, Nov. 22.
He arrived at the hospital late one night to find two men sitting with his mother in her darkened room. "I thought they was trying to steal from her," he recalls.
She wasn't that lucky.
According to complaints filed by Phillips, medical records indicate Johnson suffered a "fluid overload" after being administered two units of blood instead of the one that had been prescribed, sending her into cardiac arrest. Anthony arrived after an emergency dialysis treatment had been administered to remove the excess fluid. His mother was barely coherent, and the personnel he found were helping her recover.
After demanding an explanation for her condition, Anthony insisted his brothers and sisters be told what had happened.
"In the late part of November I received a phone call from my mother's room at Sinai," Theresa Phillips recalls. "The doctor asked was I Theresa Phillips and I responded yes. Before he could speak clearly, I head the voice of my brother Anthony in the background, cussin' at the doctors and saying, 'Tell my sister what you have done.'"
When she hung up the phone, says Phillips, she began to pray, "Lord, please don't let these folks kill my mother."
By the end of November, Mable Tubbs Johnson was begging her family to have her discharged.
Son Terry Tubbs recalls her saying, "If you don't get me out of here, they going to kill me."
"She told me, 'Just help me get my feet on the floor, and I'll do the rest.'"
According to written complaints, the family requested to have her discharged, but was told an attorney was needed.
But the thought of bringing in a lawyer was enough to make the family back away from the request. It is a decision that now haunts the family.
"All these years she's been telling things, and she never told me nothing that was wrong," daughter Karol Tubbs says, her eyes starting to glisten. "I don't know why I didn't listen to her then."
According to the family, Johnson kept asking for help to get her out throughout her final days, as she spent hours sitting up, struggling to breathe. What family members didn't know then, according to written complaints based on information gleaned from medical records, is that a breathing tube meant to assist was allegedly only providing air to one lung.
By the evening of Dec. 10, the end was near, and doctors knew it. The family was summoned. More than 40 kin waited in the hall to file into Johnson's room three at a time to share a final few minutes. They offered words of comfort and tearful kisses.
"Early the next morning, I received a phone call from my brother Lawrence, telling me to quick come see Mama. But before I could reach the hospital he radioed me and he said, 'She gone.'"
Mable Tubbs Johnson's struggle was over. Her family's struggle to learn the truth about her death was just beginning.
An odd couple
Theresa Phillips and Margot Reid were giggling like schoolgirls as they sat in Phillips' kitchen, sorting through a foot-high pile of documents in late March.
They make an unlikely pair -- Reid, a white suburbanite who wears business suits and speaks in soft, measured tones that carry the accent of her native Canada, and Phillips, an African American from Detroit's east side, with the swagger of the city in her voice and fire in her eyes.
They connected in January of 1998, when Reid, a former administrator at Detroit Medical Center, made front-page headlines by claiming in a "whistle-blower" lawsuit that she was fired after attempting to expose alleged problems at the Sinai dialysis unit. ("Fired and fighting," MT, March 11-17.)
Reid's lawsuit has been in limbo since this summer, when a judge said she had to choose between continuing public protests and proceeding with her court action. She chose to protest. Working the night shift as a nurse, she spends much of her free time helping Phillips and the families of at least five other deceased dialysis patients build their cases against Henry Ford and the DMC.
She's thrown countless hours into the effort, focusing special attention on the case of Mable Tubbs Johnson.
Which is how she came to be sitting at the kitchen table laughing with Theresa Phillips last March.
The first set of medical records had just arrived from the Outer Drive clinic, and they started the arduous task of sorting through and evaluating them. What set them to giggling was the fact that, slipped in with all the flow charts and dialysis reports, was a press release from the DMC denouncing Reid, claiming her allegations of negligence are without merit.
For some reason, the attempt to discredit Reid tickled both women silly.
A few days later, however, the mood was much more somber. Phillips had summoned the whole clan to her sister Mary Spiller's house on Detroit's west side to hear Reid report her findings.
One of the things the records revealed, according to complaints, is that Mable Tubbs Johnson frequently received a dialysis treatment shorter than the three-and-a-half hours prescribed by her doctor.
Even more alarming, considering the family's claim that their mother was hooked up to a machine containing formaldehyde, was that the checklist that's supposed to be filled out for every treatment frequently failed to indicate whether the check had been performed to ensure the disinfectant was no longer present. The same was true of other precautionary measures.
Reid's analysis was subsequently echoed by health officials who investigated the Outer Drive clinic in response to a complaint filed by Phillips. Investigators from the state Department of Consumer and Industry Services and the federal Health Care Finance Administration found numerous violations, not just in their examination of Johnson's chart, but for other patients as well.
Reid sees the report as a vindication of her position that the dialysis programs run by the Ford/DMC partnership were not providing the level of care needed to ensure patient safety.
One death, two causes?
The more information the family obtained, the more family members became convinced attempts were being made to cover-up the circumstances surrounding Johnson's death.
The fact that they had to fight for months to obtain her medical records, and then had to threaten a lawsuit to obtain missing records aroused suspicionsthat things were amiss.
One of the first documents obtained was Johnson's death certificate, which was on file with the city. According to it, she died of atrial fibrillation, commonly referred to as an irregular heartbeat. It also stated that she had the condition for five years.
It was news to the family. In a complaint to the state, Phillips alleges that the first sign of an irregular heartbeat showed up just a few weeks before Johnson died, and that the condition had nothing to do with her death.
The family also wondered why the death certificate made no mention of the puss-oozing infection that crippled her -- an infection so dangerous that the mortuary handling her body was notified by the hospital to take extra precautions so that the corpse would not infect anyone else. Neither was mention made of the alleged overdose of blood, or other acts of alleged negligence.
However, the same doctor who had signed the death certificate also compiled a hospital "death summary" that cited infection as the primary cause of death.
Around another table
When the family gathered at Mary Spiller's house in June for another meeting, the state report was still months away. Family members took it on faith that Reid's interpretation of the reports was accurate, and the analysis rocked them.
They sat stunned and silent for a painfully long time, no one knowing quite what to say.
Later, when asked what they were thinking as they listened to the news about their mother, the brothers present all admitted to fighting intense desires to take direct action. And they weren't thinking lawsuits. Big, burly men, they had mayhem on their minds.
The thoughts weren't new.
"I drive by that hospital all the time, and every time I do, I think about smashing my truck through the front doors, just to do something to them," confessed one of the brothers.
"I really wonder what a judge would do to me if I did something like that," confessed Terry Tubbs, owner of a construction company. "I mean, considering what happened to my mama, wouldn't they consider it justified?"
Then, to break the atmosphere of anger, one of the daughters began to tell stories about their mother. The others joined in, laughing as they described how, even with 12 children of her own to raise, Mable never turned away anyone in need. They ticked off the names of other children she helped raise, the number increasing so quickly it became difficult to keep count.
"At one point there were 28 of us living in the house," says one of the brothers. "Three adults and 25 kids."
As they talked, Alberta Parran, Mable's sister, sat in a green overstuffed chair, still wearing her Sunday church clothes, dabbing her eyes with a tissue held in one hand and clasping onto one of her nephews with the other.
Then she composed herself as she talked about the pain of her sister's death that won't go away.
"I find it hard to eat. I can't sleep," she said. "I look in the mirror and I see Mable's face."
She was the rock everyone in the family leaned on when they had a problem.
"It's like we were the body and she was the head," said daughter Debbie. "Now the head is cut off, and the body can't see anymore."
They can see the need to keep speaking out about their mother's death, and are determined to do so.
"We're not going to let our mother's death be in vain," vowed Theresa Phillips. "I promised her I wouldn't let what happened to her go unnoticed. I am going to keep that promise."