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Deciding how best to care for aging parents can be agonizing for families. What is the best way to honor a parent's wishes and make sure they have the quality of life they want? Palliative care, which provides relief from the pain and anxiety of serious illness, helps families with these difficult decisions. Reporter Jenny Gold brings us this story of a family in western Iowa that was struggling with end-of-life questions.
JENNY GOLD, BYLINE: Walk up to the front door of the Avelleyras' home, and the first thing you see is a doormat that says: One Nice Person And One Old Grouch Live Here. It doesn't take long to figure out who the nice person is.
PHYLLIS AVELLEYRA: I am Phyllis Avelleyra. I'm a farm girl. I came to the big city to work, and that's how I met Augie. And then we had these five girls.
BLOCK: When Phyllis says the big city, she's talking about Fort Dodge, population 25,000. Phyllis is 85 now and her husband, Augie, a World War II vet with dementia, is 93. They've been married for 60 years. Their oldest girl is already a grandmother herself. We're sitting in their living room - Phyllis, Augie, three of their daughters, and the man they think of as the newest member of their family, Dr. Tim Ihrig.
DR. TIM IHRIG: Phyllis, how are you feeling?
PHYLLIS AVELLEYRA: I am doing fine.
IHRIG: How's your breathing?
PHYLLIS AVELLEYRA: I'm noticing that I can walk from one end of the house to the other, and I have to pant a little bit.
GOLD: Dr. Tim, as everyone calls him, met the Avelleyras last year at UnityPoint Hospital in Fort Dodge, where Phyllis was diagnosed with congestive heart failure, which can be fatal. As all of the other physicians at the hospital were running tests and drawing blood, Dr. Tim had another kind of inquiry. What did Phyllis want from the rest of her life? Here's Phyllis' oldest daughter, Patty.
PATTY: He asked my mom, what were the three most important things for her. And she said, my girls, playing cards on Wednesdays, and counting money for the church once a month. And Dr. Tim said, well, then our goal is to let you do those things as long as you can.
IHRIG: This is their life. They're the boss.
GOLD: Dr. Tim is a palliative care doctor. Palliative care focuses on improving the quality of life for patients with serious illnesses and to relieve symptoms, pain and stress. It's not hospice. Palliative care isn't always given at the end of life. It can happen alongside other kinds of treatment at any point during a patient's illness. But it's a contrast to the usual rush to provide all of the advanced medical care possible.
IHRIG: With palliative care, you sit and you help someone understand where they're at. We're stealing from them if we don't give them the opportunity to decide yes, no or maybe.
GOLD: Less than a third of U.S. hospitals offer palliative care. UnityPoint added the program just last year, as part of a Medicare program to improve care and reduce costs. Dr. Tim says he never encourages a patient to skip any care. But when you sit down with people and really explain all of the options, they often choose less. And the result is not only a better quality and even length of life. It also saves money.
IHRIG: We offer more services in real time to this population, and we've had a nearly 70 percent reduction in overall expenditure. And so the patient experience is heightened. And then the nice bonus is by doing the right thing, you essentially save the system.
PATTY: The first thing Dr. Tim did - and he did this at the very first meeting - was, he explained to all of us that were there exactly what was going on with mom's heart muscle. And by explaining that to us, it helped us to understand that a lot of medical intervention would really be pointless because this is just something that doesn't really have a fix.
GOLD: So this is sort of, I mean, that's a rather disappointing thing to hear. You think about modern medical science, you sort of think it can do anything. What was that like to hear that?
PATTY: Actually, I was kind of relieved because my parents are older, and they don't like being in the hospital. They don't like having people come up to them and poke them and prod them, and say that we're gonna do this and that - and not understand what's going on at all. So to realize that this is just a part of their normal progression of life, that was a relief.
GOLD: A few months back, when Phyllis' kidney disease started to get worse, Dr. Tim's guidance made a big difference. The idea of dialysis came up. So to talk about the pros and cons, Dr. Tim gathered the family together again, along with a kidney specialist to help Phyllis make her decision.
PHYLLIS AVELLEYRA: I have seen some people who were on dialysis, and they looked so sad. And they aren't able to do what they wanted to do in their life. It was - their quality of life was just absolutely not at all the way they would want. And I decided I didn't want that.
GOLD: So far, Phyllis and her husband, Augie, have been able to stay in their own home. A nurse stops by to check on them every few weeks; and Dr. Tim makes the occasional house call, too.
IHRIG: It's just taking one day at a time. It's not just there's some dementia or heart disease. It's, here's a couple who've been together - how long you've been married, Augie?
AUGIE AVELLEYRA: Sixty years.
IHRIG: And so it's an extension, and it's honoring that and saying, how do we take it another day, another week or however longer we have? It's an honor to be on this journey.
GOLD: Dr. Tim says in the end, most of his patients - like Augie and Phyllis - aren't afraid of dying. They know it's part of life. But they are afraid of getting dead - the often painful and drawn-out period at the very end. And that, he can help with. Here's Phyllis again.
PHYLLIS AVELLEYRA: I think he also mentioned that they would be around. I mean, people would be there to help me to get through to the eventual death. And we talked about that. And he mentioned that they would never let me suffer; that there would always be some care there for me. Yep, that meant a lot.
GOLD: A few weeks after we spoke in the Avelleyras' living room, Augie suffered a heart attack. He did not go back to the hospital, but was instead moved into a hospice home. Dr. Tim visited every Friday afternoon, to share a beer and make sure he was comfortable. At the end of October, with Phyllis by his side, Augie passed away.
For NPR News, I'm Jenny Gold.
CORNISH: Jenny Gold is with our partner Kaiser Health News, a nonprofit news service.
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