MIKE PESCA, host:
This is DAY TO DAY, I'm Mike Pesca.
MADELEINE BRAND, host:
And I'm Madeleine Brand.
PESCA: A Massachusetts court grapples with a difficult end of life decision today. The case involves a seventy two year old Buddhist man who suffered cardiac arrest the day after Thanksgiving.
BRAND: Doctors at Beth Israel Deaconess Medical Center in Massachusetts said the man was brain dead and they wanted to remove him from life support. The man's family argued that according to their faith, life does not end until the heart stops beating.
PESCA: Eventually the patient died but his loved ones are still taking hospital officials to court saying they don't want any family to have to go through a similar ordeal.
BRAND: These kinds of conflicts between doctors and families aren't new. In 1999 the State of Texas created a law called the Advanced Directives Act to deal with such disputes. When the bill was first signed into law by then Governor George W. Bush it was considered groundbreaking. It had the support of everyone, from the Hemlock Society to the Right to Life groups.
PESCA: But in the years since it's been criticized for giving too much power to doctors.
NPR's Alex Cohen has more.
ALEX COHEN: Throughout her life Andrea Clark's health had never been good. She had open-heart surgery in 1957 when she was just five. Her younger sister, Lenore Dixon says Andrea was smaller than other kids and more fragile.
Ms. LENORE DIXON: She couldn't really run as fast as the others and when they were playing baseball somebody would hit the ball for Andrea and her second grade teacher would pick her up and run around the bases with her. You know she was just tiny. But she was really steely; she had a will of iron.
COHEN: That will Lenore says, kept Andrea alive for many years. She even had a child, a son named Charlie. But several years ago Andrea's health began to deteriorate. She suffered a heart attack and last summer a stroke followed by a bout of pneumonia put her in the hospital.
Ms. DIXON: That time the doctor said, you know, we need to have instructions on what to do if Andrea becomes unable to make her medical decisions. And so Charlie and I sat down with her and had that conversation. Andrea, you know, what do you want to do? Is there any circumstance where you want life support to be pulled if you have to go on it? Well she said she didn't want to be on life support if she was brain dead, but other than that she wanted them to do everything they could to save her life.
COHEN: In January of this year, Andrea had another operation on her heart that required her to be on a ventilator, which made it nearly impossible for her to speak. The next month her doctor began a conversation with Andrea's family about whether her car was futile. And so they followed the process outlined in the advanced directives act. Since Andrea's doctor felt it inappropriate to continue Andrea's treatment and her family disagreed, the hospital called a meeting of its ethics committee.
Ms. DIXON: Of course, they decided unanimously to pull Andrea's life support and we had 10 days to get her out of there.
COHEN: In such situations, where the ethics committee sides with the doctor that care is futile, the family then has 10 days to find another facility for the patient before life support can legally be discontinued. Andrea's family was unable to find another hospital that would care for her, but Lenore says, just a day before her sister was scheduled to die, another doctor at the same Houston hospital took over her care and decided to keep her on dialysis.
Andrea Clark died a week later. But, to this day, Lenore Dixon has been fighting against Texas' advanced directives law.
Ms. DIXON: To me, if you take someone's life away and they don't want you to, you've murdered them.
COHEN: But many doctors, like Robert Fine feel the law establishes a much needed framework to cope with these difficult decisions.
Dr. ROBERT FINE (Director, Baylor Healthcare Systems): This law is about compassionate and appropriate treatment for patients with terminal and irreversible illness that does a better job than any law in the country at promoting the interest, the true interest of the patient, and maintaining the integrity of the nursing, medical, and healing professions.
COHEN: Dr. Fine directs the office of clinical ethics at Baylor Healthcare Systems in Dallas. He says unlike most other states, the Texas law provides a much needed reality check to families who don't truly understand the limitations of medicine. He says loved ones are often influenced by inaccurate medical information found on line or the numerous medical TV dramas depicting patients being brought back to life despite dire situations. Fine says many families have unrealistic expectations that the same is possible in real life.
Dr. FINE: All of us human beings, we go through certain predictable psychological stages. Among those stages are denial. When we are first told our loved one is dying it is very human to say that can't be true. There must be a mistake. There must be a way out of this horrible thing.
COHEN: He says doctors also want to save lives, but not if doing so will only prolong patient suffering.
Dr. FINE: Many doctors, in fact, are being well paid to provide treatment that they think is inappropriate and it breaks their heart. I've had doctors say to me, I'm embarrassed that I'm being forced to do this by the family. I'm being paid, but this is wrong and it makes me really sad to have to do this.
COHEN: But critics of the law, like attorney Jerry Ward, say it gives doctors and hospitals an unfair advantage. Ward, who's worked with the families of several patients whose care was deemed futile, says a hospital only has to give a family 48 hours notice before holding a meeting with an ethics committee. And sometimes that 48-hour notice comes on a Friday afternoon.
Ms. DIXON: That is not sufficient time for a family to get an attorney, to get a second opinion from an expert or a doctor who's not affiliated with the hospital, or to do any meaningful preparation in order to make their case before the committee.
COHEN: Ward is a member of a group called the Advanced Directives Coalition, which has been meeting to discuss potential amendments to the law. The group's membership is diverse and includes some, like Dr. Robert Fine, who believe the law needs little in the way of change. But Jerry Ward is one of several members who hope to make it much more difficult for hospitals to be allowed to end life support.
Ms. DIXON: What I want to see is that hospitals in these instances have to treat until transfer. Because I do not think that they should have the right to take an action that ends someone's life just because of what they consider to be their ethical position.
COHEN: The Advanced Directives Coalition will meet today. To amend the current law in any way they'll need to agree upon a proposal within the first 60 days of the Texas legislative session, which begins next month. So far, the group has yet to reach a consensus as to what changes, if any, should be made.
Alex Cohen, NPR News. Transcript provided by NPR, Copyright NPR.
