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Bills challenge limits for terminal patients
February 15, 2007

Some say 10 days to transfer isn't enough before treatment ends.

Written by Emily Ramshaw, Dallas Morning News

AUSTIN – Martha Rimmer is dying.

Her doctors know it. Her family knows it. And the 66-year-old knows it too, her longtime love, Dannie Rimmer, says – despite doctors' diagnosis that she's in a vegetative state.

But Mr. Rimmer is fighting to keep her alive at Baylor University Medical Center in Dallas, after medical professionals there ruled she was irreversibly ill, suffering and should be removed from treatment at the hospital.

He has joined the ranks of right-to-lifers and some influential state lawmakers who are challenging a key provision in Texas' end-of-life law this session – one that allows medical professionals to end terminal patients' treatment if they can't be transferred to another facility within 10 days.

"If she gives me a smile in recognition sometimes and can understand what I'm saying to her other times, and she's not in constant pain and suffering, well, all I can do is make a judgment call," Mr. Rimmer said. "I don't care what the doctors think. My interest is in Martha. And I can't tell you I would ever make the decision to pull the plug on her."

When it was enacted, Texas' Advance Directives Act was a watershed compromise: Endorsed by doctors and right-to-life advocates alike, it gave a team of health care specialists and ethics experts final say over when to end "futile" life support. But a decade later, with the Terri Schiavo case in Florida having politicized the end-of-life debate, some of the same organizations that helped craft the 10-day transfer rule are seeking to dismantle it.

Texas and National Right to Life now say that 10 days isn't enough time for family members to find another facility and that doctors should have to continue treatment indefinitely. And they're backing bills filed by two key lawmakers – including Sen. Bob Deuell, a physician – to take off the time limit.

"I understand the cost of health care; I'm not insensitive to that. But our medical system is so complicated now that I don't think that 10 days is enough," said Dr. Deuell, R-Greenville. "If we're going to err, let's err on the side of life and give families a chance to get loved ones transferred without a 10-day window."

But health care professionals say lifting the 10-day limit defeats the purpose of the Advanced Directives Act, which they call the nation's best example of a compassionate end-of-life law. While they can see extending the time window, they say, for the right-to-life lobby and the handful of attorneys filing end-of-life lawsuits across Texas, it's not about compromise: It's an all-or-nothing publicity stunt.

"To them it's not about 12 days, 14 days, 21 days," said Dr. Robert Fine, who oversees end-of-life cases at Baylor and helped write the advance directives law as a representative for the Texas Medical Association. "It's a fundraising gimmick. ... They have accused us, the providers, of murdering people."

Handful of cases

Just a handful of cases occur each year in Texas, Dr. Fine estimates.

Experts say it costs between $60,000 and $80,000 a year to provide life-sustaining treatment for a patient in a vegetative state. Most cases are generally covered by private or government insurance or handled by hospitals as charity cases.

The conflict often arises because families want hospitals to continue seeking a cure, when doctors are confident there isn't one, rather than have their loved ones cared for in hospice or nursing homes until they die, said Greg Hooser, who leads the state's Advance Directives Coalition.

The Rimmers' life together was full of complications – and Ms. Rimmer's illness was no exception.

The couple, who met and wed in Shreveport in 1983, had a tumultuous marriage, as they bumped from city to city, from jobs at manufacturing plants to electrical supply companies. They divorced in the mid-1990s, and lived apart for a year before Ms. Rimmer fell ill and had both kidneys removed.

In 1999, Mr. Rimmer moved Ms. Rimmer into his home, and he spent the next two years shuttling her to dialysis treatments in between his shifts for an armored truck company. He eventually donated his left kidney to her. Two years ago, the couple relocated to Arlington to be closer to their grandchildren and to Baylor hospital.

But Ms. Rimmer's health continued to fail. In July, after months of pain, debilitating diarrhea and night sweats, Ms. Rimmer was admitted to Baylor. She was diagnosed with end-stage renal failure, internal bleeding, and finally, a virus that caused severe brain damage. Since the fall, she's been on a feeding tube and a ventilator, Mr. Rimmer said, in what doctors have told him is a semi-vegetative state.

Doctors at Baylor said they could not comment on Ms. Rimmer's case, citing hospital privacy rules as well as possible litigation. Dr. Fine was interviewed by The Dallas Morning News before Ms. Rimmer's story came to light.

Not listening to doctors

But Mr. Rimmer said doctors approached him in recent months, telling him Ms. Rimmer was terminally brain damaged and in constant pain. They asked him to consider taking her off life support, he said. And he said they second-guessed his claims that Ms. Rimmer was trying to communicate with him, trying to persuade him to end her life.

Mr. Rimmer declined. He said when he hugs Ms. Rimmer and kisses her and exercises her limbs, she gives him an enormous smile – the same one he fell in love with when they met in a lounge in Shreveport.

And though he knows she won't recover, he said, she doesn't appear to be in any pain; he says he would reconsider if she was.

"If I talk to her about her grandchildren, I can see her cry. ... When I asked her if she wanted to live, she began crying," Mr. Rimmer said. "I don't know the extent of it because I cannot communicate with her. But given the way she responds to me, I cannot agree with [the doctors'] decision."

For now, Mr. Rimmer is racing against this clock to keep Ms. Rimmer alive. He's seeking transfer facilities, he said, but is frustrated because they consider Baylor's prognosis when debating whether to accept Ms. Rimmer, whose care has been paid for by the Medicare and Medicaid programs. And his attorney plans to ask a court today to prevent the hospital from ending treatment while the case is heard.

The urgency is just as strong for members of the state's Advance Directives Coalition, who methodically crafted the original law a decade ago, but now fear it will be overhauled by lawmakers. Mr. Hooser, who has chaired the board for 13 years, said bills revising the law have a real shot at winning legislators' approval unless the medical community and the right-to-life organizations can reach some kind of compromise.

Much discussion

Hospitals only seek to end life-sustaining treatment when the patient is suffering – not just because they're in a vegetative state, Dr. Fine said. And it's not a decision reached lightly, he said. First, doctors and counselors work with the family. If the family disagrees with the doctors' decision, an ethics committee takes up the matter. If the ethics committee decides to end treatment, the hospital does its best to help the patient's family find a transfer facility within 10 days.

"We just can't fix every problem," Dr. Fine said. "What you're doing by maintaining life-sustaining or death-prolonging treatment is subjecting [patients] to significant burdens without the possibility of benefit."

More important, he said, occurrences of hospitals removing a patient from life-sustaining treatment are exceedingly rare. While the state's advance directives law doesn't require hospitals to report their end-of-life decision-making data, Dr. Fine said he's surveyed five years' worth of data from 11 Texas hospitals, and two years' worth of data from another five hospitals.

Of the 65 documented medical futility cases at these hospitals in which the family disagreed with the ethics committee's verdict and received a 10-day transfer letter, he said, treatment was withdrawn just 27 times.

But right-to-life advocates and family members of these patients say that's 27 times too many. They say the transfer window is too narrow. In some cases, they say, it can take 10 days just to get medical records released.

"One of the things we have learned is how very difficult the transfer process is and what a tremendous burden it is on the family," said Burke Balch, an attorney with National Right To Life.

And as long as doctors know they can pull the plug after 10 days, they say, hospitals have no incentive to put much time or energy into helping families find a transfer facility.

"They count the days and hit the stopwatch," said Rep. Bryan Hughes, the Mineola Republican who has filed a bill identical to Dr. Deuell's. "Under the current system, the treating facility has no incentive at all to find somewhere else to take the patient."

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