DR. JOSEPH DUTKOWSKY (Orthopedic Surgeon): This is a young person who has a genetic missing piece of I think genetic 6 chromosome.

BOB FAW, correspondent: In a busy clinic in rural upstate New York, orthopedic surgeon Dr. Joseph Dutkowsky sees hundreds of children and adults disabled by disorders which leave them crippled or deformed. Or in the case of 19 year old Omer King Jr., blind and deaf from a metabolic dysfunction.

DUTKOWSKY: (speaking to patient) And we are going to pull. One, two, three.

FAW: As a doctor, everything Dutkowsky does is informed by his deep Catholic faith.

DUTKOWSKY: (speaking to nurse) Let’s get Jr. out here.

Was it St. Francis who said, “To preach the Gospel at all times, use words if necessary.” And so, you do it with your actions. People don’t need for me to preach at them. People don’t need for me to lecture them. They need, they need for me to care. They need for me to walk in with the love of God and to try and share it in any way that I can.

FAW: Whether treating Jr. or two married cerebral palsy patients, Josie and Chris Rosa.

DUTKOWSKY: (to Chris Rosa) You look like you should be bringing in an aircraft with that on it or something.

(to Josie Rosa): What you up to? You’re looking well today.

JOSIE ROSA: Yeah. We got to talk.

DUTKOWSKY: We got to talk. We can talk. That’s for sure.

FAW: Dr. Dutkowsky is unfailingly patient, willing to listen no matter how long it takes.

JOSIE: I know this might sound strange but can you test me for osteoarthritis?

DUTKOWSKY: (to Josie) Yeah. I’m happy to do that.

Patients like this, they need me to listen to them. They need somebody who cares enough to listen to their story, because they all have a story, they all have a need.

FAW: 57 year old Dutkowsky was an engineer when he says he got the calling to become a doctor.

DUTKOWSKY: I applied to medical school and I wrote my essay. I wrote that I wanted to take some of this technology and figure out a way to help people with disabilities. Now there’s nobody disabled in my family. There was nobody that I knew of who had a disability that I was thinking about when I did it. So I, I would take that as a Holy Spirit moment.

(to Jeremiah): Run, run, run back.

FAW: Most days here, Dutkowsky sees 25 to 30 patients like 8 year old Jeremiah Harrington, born with a club foot. For each patient, Dutkowsky uses an old-fashioned, leisurely approach rarely encountered in modern medical practice today.

DUTKOWSKY: (to Jeremiah) Can I look at your feet? Can I look at your feet? Thank you.

From a spiritual standpoint what I try and do as a physician is that even if I can’t cure the situation, even if I can’t cure the condition, if even I can’t make it all go away, if they’re being overburdened with that cross, if I can just hold up a corner sometimes, it might make it light enough for them to be able to carry it and move on.

FAW: Here in the country, he does more than just listen, give injections and comfort to anxious parents. Every Monday at the Bassett Medical Center in Cooperstown, he operates on severely disabled children and before each surgery, he prays.

DUTKOWSKY: It’s an overwhelming responsibility. And if I try and go in there on my own I run so many risks of failure. But if I come in and I and ask God to be with me and help me, that even in those cases where it might not work out perfectly, I’m with him and I can be in peace.

(while driving): I was born and raised in the country. I love being out here.

FAW: Dutkowsky isn’t anchored to the country though. Every week, crucifix nearby, he drives into New York City to see patients, three hours plus on the road often spent in prayer.

DUTKOWSKY: It’s a prayer to the Holy Spirit. It’s “Holy Spirit, soul of my soul, I adore thee. Enlighten, guide, strengthen and console me. Tell me what to do and command me to do it.”

FAW: Here, anywhere for that matter, Joseph Dutkowsky is not reluctant to display his faith.

DUTKOWSKY: Good morning, good day. Hello, God bless you. How you doing?

EMILY: Good.

FAW: But he never imposes his beliefs on anyone.

DUTKOWSKY: I’m not out there to tell them what to believe. But if I make that opening, and it’s important to them, then it can be part of their care.

FAW: It is a ministry he takes each week to New York Presbyterian Morgan Stanley Children’s Hospital where at the Cerebral Palsy Center he sees patients like 10 year old Devon Ramsaram.

HARICHARD RAMSARAM (Devon’s father): After this shot, can we send him to school tomorrow?

FAW: Dutkowsky hopes the medical community will learn, from treatments pioneered here, how to treat cerebral palsy patients not just when they’re young but also as they grow older.

DUTKOWSKY: Country doctor, coming down to wonderful, you know, one of the finest medical centers in the world. I was way out of my comfort zone. But what’s the risk? If I fail, yeah, I got a little egg on my face. Big deal. But if we succeed, we can move the world.

JENNIFER SNYDER: (to Dr. Dutkowsky) He can’t get comfortable.

FAW: Two year old Nathan has a rare congenital disorder. His mother Jennifer feels about the same as most parents do when it comes to Dr. D as he is affectionately called.

SNYDER: He listens, yes. He’s a listener. He understands. He takes the time to educate a person such as myself.

CHRIS ROSA: A lot of doctors don’t listen. They just want to do what they gotta do for you and go away. Just because we may look funny doesn’t mean you should talk over us or through us.

FAW: It’s not like that with Dr. D though is it.

JOSIE ROSA: No, No. Because Dr. Dutkowsky would never treat us any different. He treats us with respect and decency.

FAW: And knowing that Dutkowsky is a man of faith reassures many, even non-Christians like Devon’s father Harichard Ramsaram.

HARICHARD RAMSARAM: Well it does, it does make me feel comfortable because it means that he has some sense of responsibility in what he does. You know what I’m saying? Because whoever believes in God does have a sense of caring, guidance. You know what I’m saying?

FAW: Treating so many young disabled patients might shake a person’s faith in a merciful God.

(to Dr. Dutkowsky): Do ever ask yourself why did God let that happen?

DUTKOWSKY: No, I don’t, because what I see when I see Omer, I go in that room and I feel love. It’s an energy from outside that draws me in.

FAW: There are bodies that are, forgive me, misshapen, malformed, twisted, crippled, and you see in that the likeness of God?

DUTKOWSKY: Yes, I do. I see the image and likeness of God in every one of those individuals.

FAW: For Dr. Dutkowsky then, faith and medicine intersect, complement one another. Seeing affliction, he also finds something meaningful.

DUTKOWSKY: There are days I go home with tears in my eyes because suffering is real. But sharing suffering is a gift. The depth of that love, the depth of that commitment, the depth of working with individuals like that, that’s the privilege.

FAW: Dutkowsky says he doesn’t heal, that only God can do that. In the meantime, this old-fashioned man of faith and modern man of science continues a ministry to both body and soul.

DUTKOWSKY: All right, God love you.

FAW: For Religion & Ethics NewsWeekly, this is Bob Faw in Delphi, New York.

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KIM LAWTON, correspondent: Three years ago, Anne Stine was a busy mother with three young children and a husband who was on the road a lot. Then her 87-year-old father, a very independent World War II veteran who lived about an hour away, suffered a stroke.

ANNE STINE: And what I found was a man who was no longer independent. He was confused and worried and starting to bark orders. So it was a very emotional time for him, and it was a scary time for both of us.

LAWTON: Her dad, who lived alone, needed a lot of care, and the issues surrounding his care were overwhelming.

STINE: The doctors came in and the social workers come in, and they start all these questions: Where do you want your dad to go in rehab? Are you set up in Medicare and Medicaid? The list went on, and I was just a mom with three little kids and not prepared to take on that responsibility, and yet I had to.

LAWTON: According to a recent study, 36 percent of all caregivers are adult children taking care of an aging parent, and that’s expected to rise dramatically. People 85 and older are the fastest growing group in America, and census projections say their numbers will more than double—to 11.5 million—by the year 2035.

Author Jane Gross says it’s a situation our entire society is unprepared to deal with. Her own education began about a decade ago, when she and her brother needed to care for their ailing elderly mother. As a journalist for the New York Times, Gross was used to getting information easily, but with this she says she felt clueless on multiple fronts.

JANE GROSS: (Author, A Bittersweet Season: Caring for Our Aging Parents and Ourselves): Medical. Various entitlement programs like Medicare and Medicaid and how they work. Residential. Where was she going to live? Legal. Financial. Those are the most obvious ones, but they don’t overlap and, you know, you can’t make three phone calls and figure them all out.

LAWTON: Based on her experiences, Gross started the New Old Age blog and wrote a book called A Bittersweet Season: Caring for our Aging Parents and Ourselves. With so many people living longer, Gross believes one of the biggest social questions is how to pay for their care during the period of long, slow decline.

GROSS: My mother was as well-prepared as a person can possibly be for the end game, if you will. I mean, she had every document known to man in perfect order, and she had a decent amount of money. She spent $500,000, bare minimum, out of pocket, her own money, and then wound up on Medicaid.

LAWTON: Gross says health care benefits don’t include provisions for home health care or assisted living.

GROSS: You can get a new heart, but you can’t get somebody to take you to the supermarket. The assumption is that families will do that for themselves, and families will pay for it themselves until they’re impoverished, and then the government will pay for them if there’s any Medicaid.

LAWTON: Complicating the situation even further, as is often the case, Gross and her brother had to work through longstanding tensions in their own relationship as well as what she calls “old family baggage” with their mother.

GROSS: If there were some way for people in the moment to understand which of it is real and which of it is baggage and leave the baggage at the door, they would come out of it much better.

LAWTON: The many difficult problems can take a severe emotional toll, especially for women, who are the majority of parental caregivers. Gross says she never realized how many exhausted, stressed-out caregivers were out there until she became one of them.

GROSS: You would see them all the time in the parking lot of either the assisted living community or the nursing home, invariably slumped over the steering wheel and crying, and then suddenly you realized it’s very hard.

STINE (on phone to her father): Do you need me to stop and bring you lunch?

LAWTON: Anne Stine says she felt torn between managing the care of her father and still meeting the needs of her children.

STINE: You have the little ones who demand so much time, and then if you’re in a situation where your parent is also demanding a lot of time you do become sandwiched, and you’re also pulled in both directions, and what is the right thing to do, and priorities.

LAWTON: A committed Episcopalian, she says for her it was a spiritual issue.

STINE: I needed support from my church and my faith community right off the bat. I knew that I had to rely on God’s strength and not my own. Leaning on God’s strength, leaning on my faith community, I turned to my church and said, “I don’t know how to do this. I don’t know how I’m going to get through this.”

REVEREND KATE BRYANT (St. James Episcopal Church, Leesburg, Virginia): If we’re caring for other people, we’re no good unless we take care of ourselves, and believe me, I have to remind myself of that quite regularly.

LAWTON: Reverend Kate Bryant is rector of Stine’s church, St. James Episcopal Church in Leesburg, Virginia. She went through a similar experience with her own mother and says the spiritual aspects can often be overlooked.

REV. BRYANT: As in any care giving situation, that care can be so demanding emotionally, physically, and it’s also demanding spiritually. I think a lot of people who are in care giving situations ask, “Why is God doing this to me? Where is God in the midst of all this?” and they really struggle with spiritual matters as they pertain to aging parents.

LAWTON: Bryant says many people in her congregation were dealing with aging parents, so she and Stine began searching for faith-based resources and support groups. But there didn’t seem to be any.

STINE: In my frustration I said something like, “Well, there should be.” I mean, when you become a parent there’s all these support groups and information. You’re bombarded with it. But nothing when you have to take care of a parent?

LAWTON: They started the Caregivers for Aging Parents ministry at St. James. The ministry provides practical resources for parental caregivers and pairs those who have gone through it with those who are just beginning.

REV. BRYANT: Know where your parents’ finances are kept, what that situation is. Do you have a living will? Do you have a health care proxy? Some of that information you can get at any local council on aging. It’s laying over the spiritual component that’s so important in the context of a church community.

LAWTON: In the end, Gross says the most important lesson she learned was not letting the logistics completely overwhelm what was truly important.

GROSS: The decisions that seem like they matter so much when you’re making them by and large don’t, but the quality of the time does. And you know, since time is finite I would worry less about fixing stuff that ultimately can’t be fixed and worry more about gathering memories and feeling good about the experience.

LAWTON: For Bryant, caring for an aging parent led to a new understanding of the biblical commandant to honor your father and your mother.

BRYANT: When we are children, we interpret that word honor as meaning being obedient. As parents age and become elderly or are aging that honor takes the form of kindness, thoughtfulness, care giving.

STINE (speaking to her father): How old were you in this picture?

PHILLIP WESTON: Twenty-one.

STINE: Twenty-one.

LAWTON: And despite the demands, or perhaps because of them, Stine says she has found that caring for an aging parent can indeed be a spiritual blessing.

STINE: And this experience has actually given me so much in return, and it’s really caring, really serving. The depth that goes into your soul when you don’t know how you’re going to do it, you really seek God and see God firsthand in the midst.

LAWTON: I’m Kim Lawton reporting.

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BOB FAW, correspondent: If you’d like to know what a hospice chaplain does, watch Kerry Egan in New Bedford, Massachusetts as she visits seventy-one-year-old Jim Burgo, who didn’t want his face shown and who is dying from liver disease.

JIM BURGO: I don’t want to suffer. I know I am going to die, but I don’t want to suffer.

FAW: At life’s end, when Burgo is anguished and needs to talk about dying, the hospice chaplain listens and comforts.

BURGO: There are a lot of things about Vietnam that I am not proud of either.

KERRY EGAN: And I think God forgives those things.

BURGO: I hope so. I really hope so.

FAW: If one aspect of her healing ministry can be somber, her visit to the Fall River home of ninety-seven-year-old Mary Labrie shows another.

Singing: “When we all see Jesus, we’ll sing and shout the victory.”

FAW: Here the mood is upbeat, because Mary, unlike Jim Burgo, faces death with absolutely no fear—indeed, looks forward to being in heaven and being reunited with her late husband of 75 years.

MARY LABRIE: Oh yeah, I’ll see them again. We will all be together one day.

EFAN: What will be like, being together again?

LABRIE: Oh, that will be wonderful.

FAW: Kerry Egan counsels people of all different faiths, and not all of her patients are religious. But the common thread in her work, she says, is helping people give meaning to their lives.

EGAN: How do you make sense of all of this that is going on in your life? For every person that I go in to see, my goal is the same, which is to find out what their goal is, to help them meet it.

FAW: A chaplain for thirteen years, Kerry Egan says that what is crucial is learning how to listen.

EGAN: I hear terrible stories sometimes—terrible stories, and the most compassionate thing you can do is not turn away. Oftentimes for you to go in and say, “It’s okay. It’s okay,” when they full well know it is not okay, it shuts them up. So now they can’t say, “I’m frightened. I’m angry. I’m confused,” because now they need to act like everything is okay.

FAW: Listening is the most important thing?

EGAN: Yes. Deeply listening to what it is they’re saying.

FAW: Kerry says something was brewing with Jim Burgo. Finally, she understood. His father had taken him away from his mother when he was very young, and Burgo was afraid it was going to happen again.

EGAN: So are are you afraid that you will die and you’ll go to heaven?

BURGO: I am not afraid of going to heaven.

EGAN: I know, but that your mother and father will be there, and your father will take your mother away again?

BURGO: That is very, very possible in my mind, yeah.

EGAN: Well, there’s no point in sugarcoating it, right? That’s not helpful. If someone is dying, and they’re sick, they know it.

(reading from Bible): “…teaching them to observe all things that I have commanded you. And lo, I am with you always…”

LABRIE: Oh, that is my favorite verse.

EGAN: I know it is.

Some people really come to the end, and they feel good. You know, they’ve done a lifetime of work and of thinking about this and they just want someone to be there with them, to sort of enforce those strengths they already have.

FAW: But others struggle, and Kerry Egan tries to see them come to terms with what ultimately matters.

EGAN: For some people there’s an incredible relief to have someone come in and say, “What did this all mean? What did my life mean? What does my death mean? Why am I sick? Is there a God? Is there a God who knows I’m sick? Is there a God who cares that I am sick?”

FAW: For a while, what Kerry couldn’t understand was why her patients talk to a chaplain so much about their families.

EGAN: It took me a long time to realize that is how people are talking about God. Again, they might not use the term “God,” but that’s how they talk about ultimate meaning. They’re trying to get at love. They’re trying to get at what God is. Jim is a great example of that. He was talking about his mother, and he was talking about love. What does the love of God look like? Am I going to get to see my mother again? Is the love my father showed me or didn’t show me, is that what God is like?

FAW: Raised Catholic, now an Episcopalian, Kerry Egan isn’t always successful. One patient actually threw a bedpan at her. But Jim Burgo’s wife, Elaine, says that every time hospice chaplain Egan visits, Jim isn’t the only one who benefits.

ELAINE BURGO: She helps me by helping him. If I want to talk, I know she is there, and she’s just an excellent, excellent listener. We don’t only discuss the Holy Spirit and God. I know she is there just knowing he is going to die. If I want to discuss anything, she is available.

FAW: Just a few months ago, Mary was near death. Kerry and the hospice team brought her back to good health, and it was only with Kerry, says Mary’s daughter, Judy, that Mary was able to reveal how she worried about the grief her death would bring her children.

JUDY BIDDLE: It gave me that peace, knowing that Mom is not in denial, that she was just worried about us. She was worried about us children. That was really precious. You know, it’s so good to have someone from outside the family that she can share with, so that she might say things to Kerry that she might not feel comfortable sharing with me as a daughter.

FAW: Family members, of course, are not the only ones who appreciate Kerry.

JIM BURGO (to Kerry Egan): You make people better. You explain God to me. You’ve given me a whole bunch.

FAW: You read the Bible sometimes.

MARY LABRIE: I read it every day.

FAW: Every day.

LABRIE: And there is some good information there to keep you going if you are concerned about things.

FAW: And seeing Kerry, does that help you keep going too?

LABRIE: Oh, yes.

FAW: Kerry meets every day with members of the hospice team. This day she talks with nurse Patty Martin about Mary’s progress.

PATTY MARTIN (to Chaplain Egan): She’s walking around. She is eating better. She is gaining weight.

FAW: Mary is doing so well soon she will have to be taken off hospice care. That worries Kerry because for patients it’s hard to lose the care they’ve come to depend upon. It’s just another issue a hospice chaplain confronts. What helps her cope and decompress, says Egan, is a happy home life: two children, a supportive husband, two dogs. She prays, meditates, hikes, and dances. It helps, too, she concedes, to maintain a certain distance from her patients.

EGAN: I have to remember that it’s not about me, right? It’s not personal. I’m a passing person in their life. You know, I’m not his wife, I’m not his daughter, I’m not his mother. Not even his best friend. You know, I’m his chaplain, and that’s a very different role.

FAW: And when that distancing isn’t enough, Kerry says, she relies on her faith.

EGAN: That gives me a lot of strength to do this. To be able to say that this is not the end and that life is hard, and really hard things happen but that we can be with each other. We can help each other through it, and that is how God functions in this world.

FAW: With Jim Burgo or with Mary, Kerry Egan says she’s learned that while there are miracles, her role is not to be a miracle worker.

EGAN: It really is between the patient and God, right? And that the patient and God are going to do the work. It’s not like I have some magical presence in there. Not at all.

FAW: And what does Kerry get out of it?

EGAN: I get enormous joy. People know so much more than they think they know when they’re allowed to explore it themselves, and God is so much more present than anybody usually gives God credit for. And I get to see that. I get to know that.

FAW: Caring for them when their bodies are failing and their spiritual needs are crying out, too.

EGAN (to Jim Burgo): You’re such a good man.

BURGO: I am not, but someday…

FAW: For Religion & Ethics NewsWeekly this is Bob Faw in New Bedford, Massachusetts.

ABERNETHY: We are sorry to add that shortly after that interview Jim Burgo died.

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DEBORAH POTTER, correspondent: Many churches hold health fairs, but this blood pressure screening at Queen of the Rosary Roman Catholic Church in suburban Chicago is a little different.

Diane Tieman (speaking to parishioner): You actually cook for yourself? That’s good.

POTTER: It’s a regular event organized and run by Diane Tieman, a registered nurse who’s on the church staff.

TIEMAN: I do health education classes. I do blood pressure screenings. I take calls from people that want information about the health care system, about themselves and their health concerns.

POTTER: And she does a lot more. Home visits are an essential part of Tieman’s job as a parish or faith community nurse, helping church members, many of whom are elderly, prepare for doctor visits and surgeries.

Tieman: Let’s just listen to your heart.

POTTER: Parish nurses are health counselors and advocates. They do not provide treatment. But there’s more to the job than checking vital signs, reviewing medications, and helping people navigate the health care system.

TIEMAN: People just need to be heard and need to be listened to, and as a parish nurse that’s one of the greatest things that we do is be present and just listen.

BOB FORREST: Diane’s been a gem. If she doesn’t make it to heaven, nobody will. She’s been great.

POTTER: Parish nursing is one of the fastest growing specialty practices recognized by the American Nurses Association. Registered nurses with at least two years’ experience are certified after receiving additional training on how to care for the whole person—not just physically, but spiritually.

TIEMAN: It’s a matter of being an integrator of health and faith, and for us as parish nurses we really believe in that spiritual component, how important that is to an individual. And I know when I work with individuals many a-times if spiritually they’re not well, it’s very difficult for them to become physically well.

POTTER: Parish nurses also serve as lay ministers bringing prayers and sometimes communion to the people they visit.

Irene: I would have been lost without you. You kept me all in one piece, you know what I mean?

POTTER: Parish nursing traces its roots back to the 1800s, when religious orders in the U.S. and Europe offered care to the wider community. The modern program was launched 25 years ago by a Lutheran pastor here in Chicago, and it’s since spread around the world. Some 15,000 parish nurses are now at work in the United States alone.

MAUREEN DANIELS (International Parish Nurse Resource Center): It started out Christian, but actually we have a lot of Jewish faith community nurses. We have some Muslim—our Crescent nurses, and we also have some that are working in Buddhist communities, Hindu, and others.

POTTER: Maureen Daniels, herself a former parish nurse, now trains nurses to work in faith communities, looking after the whole person.

DANIELS: We’re not just our heart or our liver or our kidneys, you know. We have—there’s the person that’s there, and part of being a person is that whole dimension of spirit that makes us who we are. And you can’t break it down into pieces the way we’ve been doing, you know. It really needs to be, you know, who is this whole person? What is their life about?

DONNA SMITH-PUPILLO: Come in Susan, have a seat.

POTTER: Donna Smith-Pupillo coordinates a network of parish nurses in and around St. Louis. Some work mostly with the poor and uninsured or with young families. But they all share the same sense of purpose.

DONNA SMITH-PUPILLO (Deaconess Parish Nurse Ministry Network): Parish nursing is about the intentional care of the spirit and bringing back in for all of us a sense of wholeness that embraces both the mind, the body, and the spirit and that it’s doable for almost all congregations, synagogues, and mosques. It is doable. It’s not something that has to be paid. You can use volunteers. You can find someone who’s interested and wants to serve.

POTTER: Most parish nurses, in fact, are unpaid and work part-time. Some, like Diane Tieman, are paid partly by a church and partly by a hospital, where they also serve. On this day, Tieman has brought a hospitalized parishioner a handmade shawl.

Tieman (speaking to patient): It is filled with prayers, and this one was actually made by Jerri.

Patient: Thank Jerri for me.

Tieman: I will.

POTTER: There are some things a parish nurse can’t do, like administer medications or give injections. But they can offer programs other nurses don’t, like the Queen of the Rosary knitting group that makes the shawls…

Knitting Group: Dear Lord, bless my hands…

POTTER: …and prays for those who will receive them. Tieman also works with other faith communities setting up events like this labyrinth walk at a nearby Methodist church.

TIEMAN: I really feel like when people walk the labyrinth it’s a mind, body, and spirit experience because it not only makes you relaxed and stress relieved, but for those who regard it as a spiritual tool it really helps you to build your relationship with God.

POTTER: Tieman is not a member of the Catholic church where she works, although some parishes nurses are. Either way, experts say, the best predictor of success is the strong support of the pastor.

FATHER ED PERINE: I can’t be there for all those people all the time, and so she fills in, and parishioners fill in doing that. And she also keeps me apprised when there’s a special need, or somebody requests to see me, or someone is dying—that I can go and see them. I don’t know what we would do without Diane.

POTTER: Many parish nurses see their work as more of a calling than a job.

TIEMAN: For me it is. Yeah, it is. I feel blessed and really humble, because for me in this job it really has increased my own faith as I work with people.

LINDA LANTZ: She knows where I’ve come from. We’ve been prayer partners a long time. Without it, I don’t think I would survive.

(Praying): Our Father, who art in heaven, hallowed be thy name…

POTTER: Parish nursing can be demanding and stressful, like any other kind of nursing, but it has its own rewards.

TIEMAN: When I’m with somebody and look at them face-to-face or meet them heart-to-heart, I feel like it’s like meeting God head on and looking in his eyes.

POTTER: In Elk Grove, Illinois, I’m Deborah Potter for Religion & Ethics NewsWeekly.

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TERESA CLEMENTS, RN: Who or what helps you when you face serious challenges in your life?

CURTIS NELSON: I always get comfort from Audrey, my wife.

CLEMENTS: Of 61 years.

CURTIS NELSON: Yes, of 61 years, yes. And then our pastors.

CLEMENTS: So your faith is important?

NELSON: Yes, very important.

LUCKY SEVERSON, correspondent: Conversations like this at Gundersen Lutheran Hospital in La Crosse, Wisconsin, are what set off the nationwide outcry over the so-called “death panels.” This is Curtis Nelson, connected to a dialysis machine, with his wife Audrey and his son Dennis. Teresa Clements is a nurse guiding the discussion.

CLEMENTS: With your particular illnesses, and you’ve got the multiple myeloma, the heart failure, and now the kidney disease, it’s difficult to predict when a complication can occur, and it can happen suddenly, and you might not be able or aware to make those decisions.

SEVERSON: These end-of-life conversations began in the 1980s at the urging of the hospital’s medical ethicist, Bernard Hammes. He had grown alarmed after listening to staff doctors distressed about how to treat incapacitated terminally ill patients.

BERNARD HAMMES (Clinical Ethicist, Gundersen Lutheran Health System): What does the patient want me to do? The patient now is too sick to ask, the family, when we ask the family, had no idea what the patient would or would not want, and so we were really faced with this moral or ethical dilemma.

SEVERSON: And when the doctors don’t know what the patient or the family wants, Hammes says there’s only one thing to do.

HAMMES: Here, anywhere in the world quite honestly, when you have a patient coming into a hospital who’s very ill, maybe dying if we don’t treat them, our assumption is that treating, attempting to prolong life is the right thing to do. And that, indeed, from an ethical, professional perspective is the right thing to do, but is it what the patient would want?

CLEMENTS: You have a serious complication from your kidney disease, you have a good chance of living through the complication, but it’s expected you will never be able to either walk or talk or both, and you would require 24-hour nursing care. You would choose the following: to continue all treatment because living as long as possible is most important; you would stop all efforts, including dialysis to keep you alive because your quality of life is more important than your quantity; or you are not sure.

NELSON: That would be terrible. I wouldn’t want to have that.

CLEMENTS: So to stop all efforts then.

NELSON: Yes, if I got into a position like that, yes.

SEVERSON: In La Crosse, Wisconsin, 96 percent of the patients who die have gone through these advance directive discussions and designated how they would prefer to spend their last days.

HAMMES (lecturing): This program is not trying to talk people out of treatment. This program is trying to help patients make informed decisions so that we know what they would want even in a crisis, and we can deliver the services that match their preferences.

SEVERSON: The program has been so successful representatives from around the country now attend seminars at Gundersen Lutheran. The success is due, in part, to the backing of the Catholic and Lutheran churches. A similar program is underway in Minneapolis-St. Paul, which is supported by the head of the National Association of Evangelicals, Pastor Leith Anderson of the Wooddale Church outside Minneapolis. He says he witnessed too many families going through emotional turmoil when their loved one was dying.

REV. LEITH ANDERSON (President, National Association of Evangelicals): For the family, that there are processes in place is wonderfully helpful because often children and spouses, they’re frightened, they don’t want to make a mistake, they don’t want to give up too soon, they don’t want to hold on too long, and if it’s been discussed, and especially if it’s been documented in writing, that is really a gift to family.

SEVERSON: Pastor Anderson says both he and his wife have filled out advance directives, and he’s encouraged members of his congregation to do the same. The directives, he says, are biblically based, and he uses as an example the story of Jacob when he knows he is about to die.

ANDERSON: And it tells about him bringing all of his sons around him, and he gave a prepared statement to every one of them, and it was different for each one. But the Bible line in Genesis 49 says that he gave instructions. Now that’s marvelous. Here long ago was a man who knew he was going to die and gave final instructions.

SEVERSON: Advance directives today detail individual treatment, assign power of attorney, and are available electronically. Hammes says they are not “death panels,” a description he says is “simply a lie.” He says some people choose to stay alive with any technology medical science can offer. A majority request less invasive treatments. Some, because of their religious views, are ready to meet their maker.

CLEMENTS: If those hopes don’t come true, what else would you hope for, Curtis?

NELSON: That the good Lord says I can come in.

CLEMENTS: That the Lord says you can come in?

NELSON: Yeah.

SEVERSON: The hospital now trains social workers, nurses, and pastors to conduct these discussions. Bernard Hammes has filled out his own.

HAMMES: I’m not making a judgment for you or for anyone else, but I think we live in a world in which we have to share resources. That’s a spiritual value for me. So if I receive medical care, and it reaches a certain stage, and it’s not going to change the outcome for me, but a lot more money could be spent, I would say, you know, the cost of this care has reached a point that I no longer feel is ethical, because other people don’t even have basic needs being met.

SEVERSON: Although it wasn’t the original intent of Gundersen’s advance health-care planning program, there has been an additional benefit. It saves money. Typically, hospital costs for a patient’s last 6 months of life nationwide average about $31,500. At some hospitals it’s twice that amount or more. At Gundersen Lutheran it’s $22,000 because the patient spends fewer days in the hospital.

HAMMES: Where would you rather spend your time if you had two years left to live, in the hospital going through tests and procedures? We’re putting many, many patients in this country through a lot of additional suffering and expense, some of which they’re going to have to pay for. It’s the fourth most frequent reason for families to go bankrupt.

SEVERSON: There’s another reason hospital costs are less. Doctors here are paid a salary. Dr. Jeff Thompson is CEO of the Gundersen Lutheran Health System.

DR. JEFF THOMPSON: In our organization and others like us, a physician gets no extra money because they do a CT scan or lab work. There’s no added incentive to put patients in the hospital.

SEVERSON: Dr. Greg Thompson, a pulmonary critical care specialist, says these days the intensive care ward mostly treats patients who have a better chance of long-term survival.

DR. GREG THOMPSON: Many of those patients who have the underlying terminal disease don’t even come to the intensive unit, because they have already decided that at this point in their life that’s not the level of care that they want. They want care, but not the critical care that they would receive in a critical care unit.

ANDERSON: I think that there’s a growing number of people who do not want to have a lot of tubes connected to them. I would say that increasingly I am hearing people say, “I want to die at home.” So they’re making a choice that dignity is more important than more days.

CLEMENTS: Any other hopes for you guys?

DENNIS NELSON: Oh, I would hope that he would get off from this, and if it is eventually going to happen, that it wouldn’t be a long, drawn out process in passing so.

CURTIS NELSON: That’s the biggest thing. I don’t want it to have it dragged out.

TERESA NELSON: So this is a good conversation to have.

SEVERSON: In these discussions, talk is about practical things but often turns deeply personal.

HAMMES: People don’t like talking about death. It’s a taboo in our society. This is a very intimate conversation. When you talk about these issues, you’re really talking, if you will, about the meaning of life, about your religious beliefs and faith, and ultimately about who you are, and that’s a little frightening to most of us.

SEVERSON: At the end of these discussions, Hammes says he often hears the same thing from the nurses and facilitators who conduct them.

HAMMES: What they will report to me is that what they experienced was a sacred space. What happens in families when they really get into the meaning of this conversation is they tell each other how important they are to each other.

SEVERSON: The idea of advance directives appears to be gaining traction. Intimate discussions about the end of life are now starting to take place in hospitals around the country.

For Religion & Ethics NewsWeekly, I’m Lucky Severson in La Crosse, Wisconsin.

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