Futile Care Debate: Prolonging Life, or Suffering?
On June 10, 2006, aging and ailing, Edith Pereira was taken by ambulance from St. Dominic nursing home to Memorial Hermann hospital.
It might have been nothing that serious. Urinary-tract infections had sent the 91-year-old with Alzheimer’s and diabetes to the hospital often in the previous year, and the St. Dominic’s nursing staff thought that likely was the problem this time.
But Memorial Hermann doctors found no infection. Instead, they said, her altered state — high blood sugar that made her too drowsy and combative to be fed — was an indication her dementia was now end-stage, that her frail body was shutting down. They gave her morphine to ease any pain and recommended hospice care.
The recommendation didn’t go over well with Zee Klein, Pereira’s daughter. She’d watched Pereira take care of her own mother for 10 years, then make daily bus trips to visit her at a nursing home before she died, five years later, at 100. Klein wasn’t so sure now was Pereira’s turn.
Pereira had no advanced directive, but Klein and her brother agreed she would have wanted them to take any necessary steps to save her. They asked her Memorial Hermann doctor to put in a permanent feeding tube and return her to St. Dominic.
The doctor argued such a feeding tube would be pointless — it wouldn’t change Pereira’s outcome, and she might not survive the surgery — and set up a meeting with the hospital’s futility-review committee.
“Her digestive system wasn’t able to process the solution (food),” pulmonologist Dr. Richard Castriotta, the committee chairman, said recently. “Why put in a tube that’s not going to work?”
The committee met on June 23. After more than two hours, they returned with the verdict: They would not insert the feeding tube that might prolong Pereira’s life.
Similar cases nationwide
In every hospital of every city in the United States, there are Edith Pereiras. The illness or injury might be different, but the predicament is the same: To what lengths should doctors go to save a life near its inevitable end? Is it worth it if the body will end up trapped in some motionless prison? What if the patient is suffering?
And, most importantly, who ultimately makes the decision?
Nowhere does the debate reverberate as it does in Texas, where the Legislature is expected to vote soon on bills to reform the law that lets hospitals make the decision. In cases doctors deem medically futile, it allows hospitals to remove or withhold life-sustaining treatment against family wishes as long as a hospital committee agrees with the doctor’s recommendation and the family gets 10 days’ notice to look for a transfer.
The Texas Advanced Directives Act, passed by the 1999 Legislature and signed into law by then-Gov. George Bush, has proved highly controversial the past two years. In Houston and across the state, families have waged high-profile battles against hospitals invoking it, taking them to court, alerting sympathizers, staging protests. Sporting buttons reading “Do Not Kill Me Against My Will,” opponents have waited all day — and evening — in legislative hearings to testify that the law needs to be rescinded.
To opponents, particularly right-to-life and disability-rights advocates, the law gives doctors and hospitals unwarranted authority over life and death and forces grief-stricken families into 11th-hour scrambles to buy additional time with their loved ones. To the law’s supporters, particularly the health care community, it’s a compassionate response when the dying process becomes drawn-out and painful and families are too emotionally invested to be objective.
Neither side has any desire to compromise.
Taking action on her own
Zee Klein wasn’t about to just let her mother die, no matter what some hospital committee decided. But instead of waging a high-profile fight against the hospital, she decided to get her mother out on her own.
It wasn’t going to be easy. For one, Medicare wouldn’t cover Pereira’s care if she were transferred to Christus St. Joseph, the downtown hospital where a doctor had agreed to take the case. Her coverage for her particular diagnosis already had been exhausted at Memorial Hermann.
Further complicating matters, Pereira’s condition was deteriorating fast — by the time the hospital’s futility committee ruled, she was in respiratory distress and her kidneys were failing. Doctors wrote in her chart that the discharge was against their advice.
“The patient was unstable,” Castriotta said. “Given how sick she was, doctors felt her release would be dangerous.”
The moment wasn’t lost on Klein.
“She looked like she was in the throes of dying,” said Klein, 68, who had previously cared for her late husband when he suffered a stroke and numerous heart attacks. “We didn’t know how long she had.”
Still, Klein had a plan. She would have her mother transferred back to St. Dominic nursing home for several hours, then taken to St. Joseph’s emergency room, where federal law would require she be admitted.
But would she make it? Pereira’s condition was so precarious that paramedics gave her oxygen through a respirator and stood ready to take her to a closer emergency room if it looked like she wouldn’t survive the drive to St. Joseph.
On the afternoon of June 26, Pereira was discharged from Memorial Hermann and started the journey.
Taking advantage of technology
For most of history, there was no dispute about medical futility — doctors could do little to stave off death. But with the invention, then widespread use of CPR, respirators, dialysis and other technologies in the latter half of the 20th century, they could artificially prolong the lives of many dying patients.
Doctors took full advantage of the technology. For a time, if there was a conflict over a patient’s end-stage care, it usually involved “right-to-die” cases: families urging doctors to let their loved ones die and doctors doing everything in their power to keep them alive.
“There was a real ‘rescue fantasy,’ the idea that everything possible be done,” said Dr. William Winslade, a bioethicist at the University of Texas Medical Branch at Galveston. “I had doctors in those days say to me, ‘I went to medical school to save lives, not give up on them.’ “
But after New Jersey’s Supreme Court ruled in 1976 that Karen Quinlan’s parents could remove her from a respirator, doctors started coming around to the notion that just because they could keep someone alive didn’t mean they should. There were things worse than dying — such as causing patients suffering without benefiting them.
By the 1990s, the pendulum had swung again. Extraordinary medical advances stoked expectations, and patients and families felt empowered to make medical decisions as a result of the patient autonomy movement. Consequently, some people became skeptical of doctors’ intentions and interpretations.
In that context, the medical futility provision of the Texas Advanced Directives Act was a watershed compromise. Endorsed by doctors and right-to-life advocates alike, it made hospitals the arbiter of life-and-death decisions but respected patient autonomy by allowing for transfers.
The compromise didn’t hold. Families and right-to-life advocates complain that the two-day notification of a hospital committee’s intent to review a case isn’t sufficient to prepare and the 10-day transfer time not long enough to locate another facility. Moreover, once a hospital committee deems a case medically futile, it’s often all but impossible to find another hospital that will accept the patient.
But that’s just the surface. Underneath, mistrust rules. The right-to-life and disability-rights camps accuse doctors of basing decisions on their personal qualitative values rather than purely medical considerations. Hospital officials and doctors, frustrated by the circus that sometimes accompanies conflicts, think families are in denial or expecting a miracle. They blame activists for politicizing the cases and distorting reality.
“The law was well-intentioned, but it ended up creating polarization,” Winslade said.
‘Extremely poor’ prognosis
Pereira made it to St. Joseph Hospital, but doctors summed up her prognosis in two words: “extremely poor.”
It was understandable. On the day she was admitted, Pereira’s problems included pneumonia; sepsis, a potentially fatal blood infection; dangerously high blood sugar; severe dehydration; a urinary-tract infection; kidney failure; and respiratory distress.
Doctors worked diligently over the next 72 hours to stabilize Pereira, giving her antibiotics, putting her on intravenous fluids, balancing out-of-whack electrolytes that were causing the kidney failure.
Pereira improved significantly, and St. Joseph scheduled an ethics committee hearing to consider all the options, which included inserting a gastric feeding tube. Many doctors, like those at Memorial Hermann, thought that the case seemed futile.
But Klein had one thing in her favor. St. Joseph, which since has been sold to Hospital Partners of America, then was a Catholic hospital.
“We follow the U.S. bishops’ directive that the presumption be in favor of nutrition and hydration as long as the benefit outweighs the burdens on the patient,” said Mike Sullivan, an administrator at Christus Health Gulf Coast, St. Joseph’s corporate headquarters before the sale. “At a Catholic hospital, food and water are considered comfort care.”
The ethics committee persuaded Klein to put a “do not resuscitate” order on her mother in the event of a cardiac arrest. A week after the meeting, a St. Joseph gastroenterologist inserted the feeding tube.
On Aug. 12 — a month later, finally free of all infections — Pereira returned to St. Dominic nursing home.
Doctor’s conscience vs. patient’s autonomy
Pereira’s case is a Rorschach test of the futile-care debate. Proponents say her case shows the law works — Klein was able to find a facility to provide the treatment she wanted; to opponents, it shows the nightmare a family can experience.
Then there is the money issue. Opponents suspect that no matter how much hospital officials deny it, a patient’s ability to pay can play a role in the decision to stop treatment, whether it comes from the hospital or an insurance company.
Supporters of the law respond that only a doctor can trigger the process. But they also note that with 25 percent of U.S. health care dollars being spent in the last year of life for the less than 1 percent of people who die each year, society needs to debate medical priorities.
Ultimately, the issue comes down to a classic conflict: a doctor’s conscience versus patient autonomy. Doctors say no one can force them to provide life-sustaining treatment they consider inappropriate, just as a patient, say, can’t make them prescribe an antibiotic for a fungal infection. Patients say they have the right to make choices about their care without their doctor forcing his or her views on them.
“To say choice wasn’t built into the law is wrong,” said Rep. Garnet Coleman, D-Houston, who co-authored the 1999 law. “But it’s clear it has hiccups — such as whether in practice, there is ‘real choice.’ It seems clear, for instance, that 10 days isn’t an adequate period of time to find a transfer.”
More than a year of negotiations to reform the law has led to compromise legislation — House Bill 3474 and Senate Bill 439 — that is expected to come out of the Legislature; SB 439 could come before the full Senate next week. It would extend the 48-hour notification time to seven days and the 10-day transfer period to 21 days. It also would preclude hospitals from invoking the law in the case of patients whose only life-sustaining treatment is hydration and nutrition. A bill that would have forced doctors to provide treatment until a transfer can be found had picked up a lot of support earlier in the session but has lost momentum.
Pereira settled back in at St. Dominic nursing home. Ensconced in bed the first day, blind from her diabetes but still able to hear, she took the measure of the room and said to to Klein, “No TV?”
Pereira’s feeding tube worked fine, but in the months that followed, her dementia progressed. Her speech dwindled from phrases and single words to nothing at all. She slept most of the time, her breathing occasionally labored. At other times, her eyes opened, staring out. Doctors used the term vegetative state, but Klein swore her mother was communicating with her eyes.
Klein and her brother alternated daily visits. In December, in a room full of balloons and gifts, they celebrated as Pereira turned 92.
It all took a toll financially. Pereira went on Medicaid last May, after her home health care needs depleted her savings. In addition, Klein estimates her mother’s final years cost several hundred thousand dollars. Probably a third of that, she says, was since mid-2006. She says she has no idea how much the bill was to Medicare and Medicaid.
But Klein, who says she was “horrified” by the experience, said in November that there was never a chance she and her brother were not going to pursue care for their mother, “the family’s rock,” a sixth-generation Texan who raised her and her brother as a single parent in post-World War II Galveston.
“We believe that when it’s someone’s time, it will happen,” Klein said. “Without doctors pulling plugs or stopping food and water.”
Castriotta stands by the call Memorial Hermann made in the matter but acknowledges that the hospital “may have to improve the communication process.” Patients’ families, he said, “often hear what they want to hear.”
Three times after the return to St. Dominic, Pereira returned to the hospital. The first two were relatively minor, involving treatment for infections and dehydration. But the last time, J an. 30, Pereira was rushed to St. Luke’s Episcopal Hospital with respiratory failure.
Sensitive to perceptions and costs
If there’s anything that doctors are sensitive about, it’s the perception, in the words of one that “they’re unfeeling technocrats who get together on a whim and decide to ‘pull the plug.’ ” They stress, despite the claims of some patients’ families who say they were blindsided by the invoking of the law, that the process starts long beforehand, with second opinions, third opinions and family meetings.
They also talk about the costs — to staff, particularly nurses, whose rate of burnout, they say, is directly related to wound-cleaning, needle punctures and other painful tasks performed on patients with no hope of recovery; and to other critically ill patients, whose transfers occasionally are rejected because a crowded intensive care unit includes the care of futile cases.
Critics talk about red flags the law exposes, such as the preponderance of people of color affected. A 2006 University of Rochester study found, for instance, that blacks are much more likely than whites to want life-sustaining care in cases doctors typically consider futile.
They also say that most families who’ve fought with doctors were not expecting a miraculous recovery. Instead, says Texas Right-to-Life Director Elizabeth Graham, they just “don’t want to feel complicit in hastening their loved one’s death.”
What is clear about the futile-care debate is that the Texas law is rarely invoked. From 2000-05, 16 large hospitals across the state reported giving families notice 65 times that their loved one’s treatment would be terminated. In 27 of those cases, treatment was halted at the end of the 10-day period.
Nor does aggressive treatment necessarily lead to better outcomes. A review of care in the last six months of life for 115,000 patients who died at 77 of the nation’s top hospitals revealed the intensity of treatment varied three- to six-fold, yet the outcome was the same — death.
“The message I try to bring to families is death is God’s final healing,” says Dr. Robert Fine, an ethicist at Baylor Health Care System in Dallas.
Stabilized, but end was near
St. Luke’s doctors stabilized Pereira, but it was clear the end was near. A week later she was transferred to Kindred Hospital, a long-term acute-care facility in the Texas Medical Center.
On Feb. 15, nearly eight months after her mother was taken to Memorial Hermann, prodded about whether she ever had second thoughts, Klein reflected on the ordeal. “I pray I’ve done the right thing,” she said.
Less than two hours later, Pereira died.