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When to let go? Families of patients on life support face painful choice

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  • JUDY WOODRUFF:

    And finally tonight to California.

    We have partnered with inewsource, a San Diego-based journalism nonprofit, to take us inside special nursing home units where thousands of people live on life support. The state spends millions of dollars on this type of care designed to preserve life at all costs. Families often have high hopes for their loved ones to recover, but few ever will.

  • Inewsource reporter Joanne Faryon reports on the impossible choice facing those families:

    when to let go.

  • STEVE SIMMONS:

    Your husband. Your husband. You know me. You know me.

  • JOANNE FARYON:

    Steve Simmons spends most evenings by his wife’s bedside.

  • STEVE SIMMONS:

    Does that hurt? Does that hurt your ear?

  • JOANNE FARYON:

    Rafaela Simmons is severely brain injured.

  • STEVE SIMMONS:

    Squeeze my hand. Squeeze my hand if you love me.

  • JOANNE FARYON:

    She has a feeding tube in her abdomen, a tracheotomy tube in her throat. She is unable to walk or talk or respond to the world around her.

  • STEVE SIMMONS:

    Squeeze my hand. Squeeze my hand.

  • JOANNE FARYON:

    She has lived in this nursing home for the past four years.

  • STEVE SIMMONS:

    You can do it. Squeeze my hand.

  • JOANNE FARYON:

    Rafaela is one of the 4,000 people living in units like this in California. On the books, they’re called subacute units, but among some doctors, they’re known as vent farms, because so many of the people who live here need ventilators just to breathe.

    The average age of these residents is 56. But there are units devoted just to children. They’re the end of the line, the place people go once medicine has saved them, but where there is little hope for recovery.

    Ed Kirkpatrick is the director of the Villa Coronado Nursing Home in San Diego County.

  • ED KIRKPATRICK, Director, Villa Coronado Nursing Home:

    The drive in the system is to be able to repair and fix anything. And that’s a good thing. That’s a good thing. We want that to happen. At what point, though, does it become futile?

  • JOANNE FARYON:

    The Villa Coronado subacute unit is one the largest in California. Most of the 62 men and women here don’t react to people or stimuli, touch, sound, smell. They have not tasted food in years. Some have had strokes, others traumatic brain injuries, falls and fights, car and motorcycle crashes.

  • STEVE SIMMONS:

    It was a beautiful day in February. It happened on Valentine’s Day 2010. And I loved riding my motorcycle.

  • JOANNE FARYON:

    Steve wasn’t going very fast that Sunday morning. Rafaela was on the back of his bike when they were hit by a car. She was thrown.

  • STEVE SIMMONS:

    But I don’t know how high she went. I don’t know at what angle she came down. My friend saw, but I told him, don’t tell me. I don’t want to hear.

  • JOANNE FARYON:

    Like everyone on this unit, Rafaela needs constant care. She is turned to avoid bed sores. Her tubes are cleaned and flushed, and there is this, the routine suctioning. People with tracheotomies are unable to cough up mucus that gets trapped in their lungs.

    Dr. Ken Warm is Rafaela’s doctor.

  • DR. KEN WARM, Villa Coronado Nursing Home:

    I feel it every time I see it, how frightening it would be to have a tube in my lungs, somebody is doing that to me, and I can’t move my arms to push it away. Reflecting on that can be horrifying.

  • JOANNE FARYON:

    This level of care is expensive. It can range from about $500 a day to as much as $900, depending on the nursing home. Medi-Cal, a state program for the poor and disabled, pays for most of it, more than $630 million last year. That’s almost double over the past decade.

    The state of California established these units back in 1983 to save money. Keeping people on ventilators and feeding tubes is even more expensive in an intensive care unit than in a nursing home.

    Joan Teno is a professor at the Brown Medical School. She is an expert on medical care for the dying.

  • DR. JOAN TENO, Brown Medical School:

    I was kind of shocked. I started looking at it and I thought, this is like a Robin Cook book. It’s like a vent farm.

  • JOANNE FARYON:

    Robin Cook wrote “Coma,” a medical thriller about brain-dead patients being kept alive.

    Teno says the financial incentives in the medical system are aligned with doing more at the end of life, procedures and hospitalizations, rather than letting go.

  • DR. JOAN TENO:

    We pay for another day in the ICU. We don’t pay for a physician to sit down and have that really difficult conversation with that family about, what would your mother want under these circumstances?

  • JOANNE FARYON:

    Those conversations were politically dubbed as death panels in 2009 during the debate over the Affordable Care Act.

    Under the original health care proposal, doctors would have been paid to have end-of-life conversations with their patients. That provision was eventually removed from the health care bill. According to a recent Pew Research study, 66 percent of Americans say there are some circumstances in which doctors should allow patients to die; 31 percent believe they should do everything medically possible to save lives in all cases.

  • ED KIRKPATRICK:

    I have heard that so many times in my career, do everything, do everything. OK, we will.

  • JOANNE FARYON:

    Often, people are making those decisions under duress, or they’re making it for someone who doesn’t have an advanced directive, a document stating their medical wishes.

    After the accident, Rafaela spent nearly a month in an ICU teetering between life and death. Doctors told Steve his wife would probably never recover and offered hospice. But a neurologist who was consulting on the case told Steve, Rafaela was a fighter.

  • STEVE SIMMONS:

    He — he gave me a little bit of hope. He gave us hope.

  • JOANNE FARYON:

    In California, a patient or their next of Ukrainian can stop treatment or disconnect life support at any time. They can even withhold food and water. But deciding whether a life is worth living, and making that decision for someone else, a parent or even a child, can be agonizing.

  • WOMAN:

    Maria would throw them deliberately at their feet, so they would break.

  • JOANNE FARYON:

    Some people on this ward have a progressive illness, like Maria Curcio. She was born with severe cerebral palsy.

    Nancy Curcio is Maria’s mother.

  • NANCY CURCIO:

    She has the feeding tube, urostomy tube and the trach.

  • JOANNE FARYON:

    Maria is 54 years old. She has lived in this nursing home room for 10 years. She has kidney problems, respiratory failure, and a right hip so badly contracted, it required surgeons to cut through bone for relief. She has never walked or talked.

  • NANCY CURCIO:

    It’s getting harder and harder because, basically, if I was in that condition, I would give it up.

  • JOANNE FARYON:

    Nancy has had to make life-and-death decisions for her daughter from the time she was born. Doctors sent her home to die because she couldn’t suck from a bottle. Nancy fed her drop by drop. Ten years ago, Maria needed emergency surgery.

  • NANCY CURCIO:

    One doctor stopped me in the hall and said, Mrs. Curcio, we cannot do the surgery unless we do a trach.

    And I had seconds to make up my mind. And then I looked down at Maria, and she’s looking at me like, hey, what are you thinking about? I don’t want to die. This is me.

  • JOANNE FARYON:

    There are times when Maria smiles and she looks more like the happy little girl in so many of the Curcio family photos than the middle-aged woman she now is, or she tries to spell out the word “Mom.”

  • NANCY CURCIO:

    M. Thank you very much.

  • JOANNE FARYON:

    For Nancy, these are signs her daughter wants to live.

  • NANCY CURCIO:

    I cannot pull the plug on somebody like that who expresses the fact that they’re not ready to give it up.

  • JOANNE FARYON:

    Dr. Warm has done a lot of reading about grief since he started working at Villa Coronado, trying to understand why some people are unable to let go. He believes they grieve in the same way as someone in search of a missing person.

  • DR. KEN WARM, Villa Coronado:

    Here, they sit with the moral obligation to bring their family member back. And though I might say the hope of their return is extremely low, they can’t let go of that extremely low probability.

  • JOANNE FARYON:

    For Steve Simmons, its been a four-year vigil that at times has driven him to the brink, like when his wife’s feeding tube was clogged for the fifth time,and staff had to put a tube down her nose to feed her. He couldn’t bear to watch.

  • STEVE SIMMONS:

    And I said, one of these days, one of these days — it was terrible what I said — one of these days, I’m going to bring a shotgun in here.

    And what I really meant is, I meant that, you know what? I’m going to come in here and blow my brains out in front of all of you, because I can’t — I can’t endure any more of this.

  • JOANNE FARYON:

    Rafaela has made small improvements in the past year. She is able to sometimes squeeze Steve’s hand or grasp a ball.

    Dr. Warm continues to tell Steve that Rafaela has little chance of recovering. But, to Steve, these small gestures are affirmation he’s made the right decision to keep his wife alive.

  • STEVE SIMMONS:

    I really believe that if — that if my wife could answer, do you want to stay alive, or do you want to die, I believe that she would say that she would want to stay alive. I would — I believe that.

  • JOANNE FARYON:

    What would you want if it was you?

  • STEVE SIMMONS:

    Oh, if it were me, I would want to go. I would want to go. I wish it were me. I wish it were me. Yes. Yes. I wish it were me. Yes. Yes. I asked for that so many times.

     

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