Editor’s Note: Lyn Lusi died of cancer on March 17, 2012.

FRED DE SAM LAZARO: There are few images of war’s destruction in the eastern Congolese city of Goma. Little was built in the first place. For two decades, regional militias have clashed over the minerals here. U.N. troops have brought some order but their reach—and mandate—are limited. So is the Congolese army’s effort to assert control.

A series of peace agreements and two democratic elections have brought some stability here, although very little development. There’s still virtually no paved road in this whole country. What has continued unabated is an epidemic of sexual violence. The United Nations says the Democratic Republic of Congo is the worst place on earth to be a woman.

One place where you get an idea of what that means is a refuge called HEAL Africa.

Women work to shake off unspeakable atrocities they have faced. The trauma has left most of them with injuries that render them incontinent. This woman wears a mask to conceal her maiming at the hands of militiamen who raided her home one night about a year ago.

ANNONCIATA: My older daughter escaped from them. they told me to go get her. And I said she’d escape from you, how could I ever catch her. Since I wouldn’t give them my daughter, they hit me on the head with a machete and after I fell down they used the same machete to cut off my lips.

DE SAM LAZARO: A volunteer health worker brought her to HEAL Africa. It is the only specialty care hospital in all of Eastern Congo.  It was started 12 years ago by British-born Lyn Lusi and her Congolese husband, devout Christians who’d served the region for years before that as medical missionaries.

LYN LUSI(Co-Founder, HEAL Africa): Well, my husband was an orthopedic surgeon. He finished in Belgium in ‘84, and to this day he’s still the only one, the only orthopedic surgeon in the east of the country.

DE SAM LAZARO: Dr. Jo Lusi has performed thousands of surgical operations—fixing everything from club feet and cleft palates to fistulas, the vaginal, sometimes rectal tearing that comes from rape trauma or obstructed labor. HEAL Africa has trained nearly 30 young Congolese doctors, paying for their education elsewhere in Africa. Its bare bones emergency and intensive care are the only such services in a region of eight million people—supported by various private and international government grants. Seven hundred children with HIV get life-saving antiretroviral drugs here. But Dr. Lusi says all this is just one part of a much larger idea.

DR. JO LUSI (Co-Founder, HEAL Africa): When you serve human, I don’t see you here like a human. I see you like an image of God, so to do that you have to be holistic. You have to be total, you have to know what about the spirit, about the flesh, about the soul. Here the people are lacking everything. They don’t have food; absolute poverty. They are exploited. They are perishing because of lack of knowledge. They are perishing because of the lack of justice. So me and my wife said OK, how do we do a holistic system?

LYN LUSI: HEAL is an acronym, it stands for health, education, action in the community, and leadership development, and all of those are components of a healthy society.

DE SAM LAZARO: For many patients who come initially for medical care, healing is a years-long process of rebuilding a life. This shelter serves women whose fistulas have not healed—about a quarter of such cases.

BASENYA BANDORA: It is very different here from back in village. People were laughing at me: “She’s smelly, she was raped.” Here people know I am a complete person.

DE SAM LAZARO: Women are taught to sew, make baskets, and raise small animals, and they are allowed to dream.

BANDORA:  I want to have a little shop, and I will make bread and I will sit there with my sewing machine and people will bring me things to sew.  I will make baskets.  If I can have a little house, that would be very nice.

DE SAM LAZARO:  For now, for practical purposes, such dreams are pure fantasy, thanks to lingering health problems and also militiamen who continue to raid villages with impunity. Annonciata frequently sees the men who maimed her, but she reacted viscerally to a suggestion she might report them to the police.

ANNONCIATA: Uh uh uh uh! I’m terrified, they would kill me. Only God can punish them for what they did.

DE SAM LAZARO: But HEAL Africa has begun working to bring a more immediate justice to victims of rape. In partnership with the American Bar Association, local lawyers work to apprehend suspects and put them through the legal system here. It is flawed and corrupt but Lyn Lusi says only when Congolese begin to buy into it will it begin to work for them.

LYN LUSI: I would always encourage our legal aid to work ten times more on the issue of bringing the community in line with the law so that they appreciate what the law is trying to do and that they agree with it and that there’s social pressure, there’s a a desire within the community for zero tolerance of sexual violence, of any sort of violence.

DE SAM LAZARO: That’s what brought this 15-year-old girl and her father to the legal clinic to bring charges against a young man who raped her while she went to collect water for the family.

PATRICE KIHUJHO: I want him not only to be put in prison but I also want him to pay for the damages he caused. Last year, I turned 75 years old. When we were growing up, we never saw this kind of behavior. When you liked a girl, we would get married. I am really astonished. I’m not sure what’s going on, how they can take little girls and assault them.

DE SAM LAZARO: Lyn Lusi thinks it’s a consequence of fighting that has raged for two decades in Eastern Congo, destroying any sense of community.

LYN LUSI: You have seen your village destroyed, you’ve seen your people killed, you’re a young man with no future, I mean you have every reason to fight and every reason to go off and join the militia. There are also those militias that will kidnap children and take them into their armies and just to reinforce their ranks. Children are extremely good soldiers in that they have no fear, and they have no conscience.

DE SAM LAZARO: Where does one begin to repair this? The Lusis say they have worked to tap the enduring faith of most Congolese.

LYN LUSI: Here is a mandate to care that’s in the Muslim community, that’s in the Christian community, and it’s present in every single locality in Congo. You could say that probably 95 precent of Congolese will go to a place of worship once a month at least. So this is an amazing power within the community, and if we knew how to mobilize people correctly, around their mandate to care, then you can make a big impact on a social problem.

DE SAM LAZARO: HEAL Africa has gathered religious leaders and other community elders into so-called Nehemiah Committees. These gatherings address sources of violence early on, mediating local business disputes or competing land claims before they escalate. Lyn Lusi says it’s a start.

LYN LUSI: I have no illusions that we’re dealing with major issues that are pulling Congo apart. I don’t think HEAL Africa is going to empty the ocean, but we can take out a bucketful here and a bucketful there. There is so much evil and so much cruelty, so much selfishness and it is like darkness. But if we can bring in some light, the darkness will not overcome the light, and that’s where faith is. We believe that.

DE SAM LAZARO: For her work, Lusi was awarded the 2011 Opus Prize, a one million dollar award given by the Minnesota-based Opus Foundation to a faith-driven social entrepreneur.

For Religion & Ethics NewsWeekly, this is Fred de Sam Lazaro in Goma, Democratic Republic of Congo.

BETTY ROLLIN, correspondent: For years, Natalie Albin endured aggressive treatment for leukemia. She wound up in Memorial Sloan Kettering Hospital in New York. Death was near.

FRAN CRONIN: She’d had years of chemo. She was done with it. There was nothing left for her body to tolerate.

ROLLIN: Her daughter, Fran Cronin, says that what the family wanted at this point was a quiet time to be together and say goodbye.

CRONIN: But the doctors kept on coming back to us and asking us if we’d like to do tests, what else we could do, and we’d have to say, well, what kind of difference will this make? Is this going to change the prognosis? No. This might extend her life for a couple of months. What quality of life is she going to have? Nothing really better, can’t guarantee. In our effort to say goodbye to my mother we were always being interrupted by the hospital’s own need to be service-driven. They weren’t about hospice care. It wasn’t about saying goodbye. Their role and their interaction with us was to provide treatment.

DR. LACHLAN FORROW (Beth Israel Deaconess Hospital): We are wired as human beings, thankfully, to when in doubt you fight for life no matter what. Doctors and nurses are trained, first we want to try to save a life.

ROLLIN: While the person whose life is being saved wants to be kept as comfortable as possible, he or she doesn’t necessarily want to be saved, and often this hasn’t been made clear to either the doctor or the patient’s family. Dr. Lachlan Forrow is director of ethics and palliative care at Beth Israel Deaconess Hospital in Boston.

DR. FORROW: The tragedy is our health care system does not provide any context to help doctors and nurses have the time to talk with people about these hard things, and the whole system is greased to pay hospitals and others for expensive things people might not even want. One of the fundamental problems is what gets called our fee-for-service system. Doctors and hospitals get paid for the things that they do that tend to be expensive. The more expensive it is, the more you get paid.

ROLLIN: Our medical system can’t keep everyone healthy, but it excels at keeping people alive, which is expensive. Twenty-five percent of all Medicare spending is for the 10 percent of patients who are in their final year of life. For the year 2012 alone, that’s expected to be $137 billion. Most of the money is spent in the last 6 months of life, which is often of little benefit, if any, to the patient. And the conversations between patients and doctors and family members which might make a difference, Dr. Forrow says, aren’t happening, partly because people are afraid to talk about death and because the part of the Obama health care reform plan, which would have reimbursed doctors for these conversations, was shot down.

DR. FORROW: Cheap, political, inflammatory comments like “death panels” and “pulling the plug on grandma” for cheap political points have terrified the American people in a way that I think—I think that’s immoral.

ROLLIN: Dr. Susan Mitchell, who has studied advance dementia in nursing home patients, has found that even though these patients can be treated and kept more comfortable in a nursing home, they are often hospitalized where they receive aggressive and sometimes painful treatment that is covered by Medicare.

DR. SUSAN MITCHELL (Senior Scientist, Hebrew SeniorLife): The nursing home does not get reimbursed for taking care of a patient who’s acutely ill with advanced dementia, which can take a lot of staff time and resources. So it’s at no cost to them to send them to the hospital where they will get that care.

ROLLIN: The Alzheimer’s Association estimates that the cost for dementia care in 2011 will be approximately $183 billion, mostly paid by the government, and that cost will go up to $1.1 trillion in 2050.

DR. MITCHELL: I think there’s a lot of unnecessary and costly medical care being provided for patients with advanced dementia that is not what the families and patients want.

ROLLIN: But even if patients and their families have expressed their wishes, that doesn’t solve the entire cost problem.

PROFESSOR DAN BROCK (Harvard Medical School): At the end of life, people often have greater difficulty in giving up, in no longer using resources, and so you hear this notion, particularly from families, “I want everything done,” and implicitly there, or sometimes explicitly, “Don’t worry about the cost,” right?

ROLLIN: Professor Dan Brock, who teaches ethics at Harvard Medical School, is one of the few who believes America must ration covered health care based on efficacy and cost.

PROFESSOR BROCK: I was once at a meeting in Britain many years ago with British physicians, and we were talking about end-of-life care decisions, and the Americans asked, “Well, what do you do when patients demand or when families demand?” And the British docs sort of looked bemused and said, “Well, they don’t do that here. They don’t demand here.” We have insurance, so we say we’re entitled to it, and we have this view that rationing is a bad thing to do, and so we think we ought to get it.

ROLLIN: The problem is more acute when the patient is dying.

PROFESSOR BROCK: Should we cover this new cancer drug which extends life on average for three months and costs $200,000 or $300,000 to do so? And when you look at it that way, then people can begin understand that, well, it doesn’t seem to make sense.

ROLLIN: And the other difficulty, Professor Brock adds, is that once a drug is considered safe, Medicare does not consider cost in their approval of coverage. They ask only whether the treatment is “reasonable and necessary.”

PROFESSOR BROCK: Medicare is not able to deny coverage on grounds that—what’s usually called cost effectiveness. That is, the cost isn’t merited by the benefits.

ROLLIN: Many experts say if the question of cost is not dealt with it will surely get worse because of new treatments, which will be more expensive. Also, a growing population of the aged and their physicians will want these treatments, no matter the cost to Medicare.

For Religion & Ethics NewsWeekly I’m Betty Rollin in Boston.

BOB FAW, correspondent: From his backyard dock, the setting seems idyllic. With his devoted wife of 47 years, retired Air Force colonel Jim Horney should be enjoying the golden years.

JIM HORNEY: You know, you can look at me and say, golly, that guy looks good for 70. But there’s a worm in the apple.

FAW: The “worm” is prostate cancer. Jim’s doctor first diagnosed it as an aggressive cancer eight years ago.

HORNEY: I said how long can I expect to live with this serious prostate cancer? Her reply was on average about two-and-a-half years. This was in 2002. So two-and-a-half years—I am obviously well past my expiration date, if you will.

FAW: Jim kept alive during the past eight years by undergoing hormonal therapy and radiation. But now the cancer has spread throughout his body. Desperate, this fall he started a revolutionary new treatment—Provenge.

FAW: Did you regard it as a miracle drug?

HORNEY: Absolutely, absolutely did, because I was tired, I was fatigued, I had no future looking at what I was doing now except a slow deterioration.

FAW: Provenge is the first so-called cancer vaccine—not a pill mass-produced in a factory, but an individual treatment. The patient’s blood cells are first drawn, exposed in a lab to a protein which mimics prostate cancer, then put back in the patient’s body—“supercharged,” if you will, to stimulate the patient’s immune system to fight prostate cancer.

DR. PAUL SCHELLHAMMER (Urology of Virginia): The idea of having the body’s own defenses revved up against this foreign invader is quite novel. It had never been applied to humans in a satisfactory and successful way, and this was, in that sense, a big breakthrough.

FAW: Approved last year to treat men with incurable prostate cancer, Provenge extends life for many patients by roughly four months.

HORNEY: That’s the average. I’m well on to beating the averages, and I will work at beating the averages. It is a miracle drug, and so yeah, I have great expectations for this. Huge expectations. Will it? We’ll see.

(speaking to wife): …$37,000 for the one treatment…

FAW: But the price tag for this so-called miracle drug is on average $93,000. Jim Horney’s bill: $110,000.

HORNEY: $110,000. My goodness gracious! How do you, how do you work with something like that?

FAW: Jim Horney had to take out a $22,000 loan to pay for the first treatment while waiting to see if Medicare foots the entire bill.

HORNEY: They do have me over a barrel, and if push comes to shove I will probably suck this up.

FAW: Urologist and oncologist Dr. Paul Schellhammer plans to use Provenge one day to fight his own prostate cancer. He has recommended it to some of his patients knowing how some will struggle with the decision.

SCHELLHAMMER: For the person for whom it becomes a major hardship—i.e., do I mortgage my home, do my kids not go to college—I think that becomes an ethically based decision as to how important is life? Most men in this situation have lived 60, 70 years, and how important is another one, two, three years or two, three, four months?

BILL MCCLOSKEY: Yeah, it’s not a long time. But, you know, when you’re fighting for your life, four months, you know, is just four months more to be with your family, to be with your wife and to enjoy life.

FAW: Sixty-two-year-old engineer Bill McCloskey’s insurance company is paying for his Provenge.

MCCLOSKEY: My father died of prostate cancer. This stuff was not available to him. I feel lucky to be living at a time when new treatments are being developed, when there is hope for the future.

FAW: And while the price is high, says McCloskey, in the long run it may prove to be anything but.

MCCLOSKEY: This opens up a whole brand new type of treatment and hope for cancer patients where utilizing the body’s own immune system to fight the disease. This is not the end; this is just the beginning.

FAW: Dr. Schellhammer says Provenge has almost no side effects and costs about as much as chemotherapy. Still, he is troubled by the skyrocketing cost of many cancer treatments.

SCHELLHAMMER: Once the FDA approves a drug, the pharmaceutical company or the biotech company then has carte blanche in establishing the price. I think there’s been a disconnect between what it costs to develop, produce, and bring to market versus what it eventually translates into with regard to either a windfall or a fair profit.

FAW: Dendreon, the developer of Provenge, says the price is fair for this revolutionary procedure, which it says took 15 years to perfect and at a cost of over one billion dollars. [Editor's Note: The original version of this story included a statement about Dendreon's return on investment. It has been removed from the script and the video at the company's request.] But as the cost of new cancer treatments continues to escalate, ethicists are asking how does one put a price tag on human life? And in a society with limited resources and virtually unlimited medical needs, who decides who will get that expensive treatment and who doesn’t?

DR. RUTH FADEN (Director, Berman Institute of Bioethics, Johns Hopkins University): If we think it’s worth the money, right, do we find a way to squeeze it out of the allocation we’ve got from health care now? Do we find places where we want to squeeze it out from something else? Do we want to attach a higher value to extending the last few months of a person’s life than we would to any other random four months over the course of a lifespan?

FAW: Ultimately, and unfortunately, says ethicist Dr. Ruth Faden, director of the Johns Hopkins Berman Institute of Bioethics, the basic question comes down to cost and benefit.

FADEN: It would be really nice if we could come up with a structure in which the price of the drug was attached to its value and we had a way of agreeing what that value was.

FAW: There is no such mechanism?

FADEN: Not yet.

FAW: In fact now, say medical practitioners, now there is no such mechanism. Who gets Provenge and who doesn’t comes down to a basic proposition.

(speaking to Dr. Schellhammer): The bottom line is economics.

SCHELLHAMMER: Currently, that is the case.

FAW: As to who gets the drug.

SCHELLHAMMER: Yes. We have many more patients than the supply could provide, but many of them say, “I just cannot afford it, and that’s not in my realm of possibility.” So they are screened out by that fact.

FAW: Let’s be candid. They are screened out by economics.

SCHELLHAMMER: Oh, absolutely.

FAW: For some, however, economic considerations are secondary. Getting that extra four months of life—maybe more—is priceless.

ANNE HORNEY: My husband’s worth it, and if it means selling our house, so be it. He’s more important to me.

FAW: What’s his life really worth? Is it—can you put a price tag on life?

ANNE HORNEY: No, certainly not. No, no.

FAW: It is, then, an ongoing debate over a medical treatment which is new—and a problem which is not.

FADEN: Even before we get the Provenges, we have lots of cancer patients in this country who can’t afford their cancer medications as it is. We’ve got a messy health care system where we haven’t figured out what we think constitutes good value for our money. It’s that striking a balance—easy to say, almost impossible to achieve so far.

FAW: Until that balance is reached for Bill McCloskey, who recently completed his third and final treatment of Provenge, and Jim Horney, still waiting to see how Provenge affects his cancer, there will be both hope and anxiety.

For Religion & Ethics Newsweekly this is Bob Faw in Poquoson, Virginia.

Since this piece first aired in February, Jim Horney tells us he is “hugely” disappointed with the drug. He says he had only a brief improvement. He’s now back undergoing radiation treatment.

Originally broadcast July 16, 2010

FRED DE SAM LAZARO: Abraham Verghese has all the credentials and degrees befitting a professor at Stanford Medical School. But he is best known and acclaimed for his writing — two best-selling memoirs and a new work of fiction that evoke a different kind of medical vocation.

ABRAHAM VERGHESE: My desire to be a physician had a lot to do with that sense of medicine as a ministry of healing, not just a science. And not even just a science and an art, but also a calling, also a ministry.

DE SAM LAZARO: His goal is to have today’s medical students aspire similarly to a calling­ as much as a career in medicine, to awaken a more basic curiosity as they sharpen their clinical acumen. These third-year medical students were studying abnormalities on a scan, specifically the prominence of certain blood vessels.

VERGHESE: (Speaking to students) This is what’s called pulmonary redistribution. Have you heard that term? It’s an early sign of heart failure. Who’s got good hand veins that I can borrow?

DE SAM LAZARO: Verghese offered a simple physics explanation of why blood vessels should not normally be visible above the level of the heart.

VERGHESE: (speaking to students) The level of her right atrium is about here. So watch what happens as I raise her hand. You still see the veins, nice three dimension, right? See how they’re flattening out? Now they are gone.

DE SAM LAZARO: The bottom line: Well before an x-ray, a doctor might spot telltale signs of disease.

VERGHESE: (speaking to students) And you see their neck veins and they’re not coughing, speaking, singing, straining, they have increased venous pressure.

DE SAM LAZARO: Increasingly, he says students and practitioners of medicine in the West rely on technology in a system that stresses cognitive knowledge and machines over the skill that comes from touch and feel.

VERGHESE: I’m the first to admit that the resolution of a hand feeling the belly doesn’t compare with the resolution of a CAT scan scanning the belly, but only my hand can say that it hurts at this spot and not at this spot. Only my hand can say that. Only my hand can say that this pulsatile mass, which might be an aneurism, is also painful, which is therefore maybe a leaking aneurism. You know, there are nuances to the exam that no machine is going to give you.

DE SAM LAZARO: It’s a theme Verghese has sounded repeatedly over the years, writing in magazines, including the New Yorker and Atlantic, and now in a best-seller called “Cutting for Stone.” It fulfills a long-held desire to write fiction, as he told this book club in Menlo Park, California.

VERGHESE: (Speaking at book club) Dorothy Allison, a wonderful American writer, she says fiction is the great lie that tells the truth about how the world lives.

DE SAM LAZARO: The setting for Verghese’s novel is far from Silicon Valley — a mission hospital in Ethiopia. It is a textured, 650-page narrative, set amid that country’s turmoil in the 60s and 70s. Its stories of medicine, doctors and future doctors at the hospital all illustrate what the author calls the “Samaritan role” of the healer. Verghese went from med school in India to Boston, Tennessee, Texas, then Stanford. He was born and raised in Ethiopia to parents originally from Kerala, India and from its Syriac Orthodox traditions. Faith was a big part of life for this and other expatriate communities in the Addis Ababa of his youth, which may unwittingly have shaped some of the novel’s characters.

Woman at Book Club: You said that what really inspired you to write the book was you wanted to write a book that would get people interested perhaps in medicine. But there was so much in the book about faith and different types of faith, and so how did you come to have so much of this, of another theme in your book?

VERGHESE: Well, you know, the honest answer is I don’t really know. It all just sort of evolved that way. And I think when you’re in medicine, you agonize over matters of faith.

DE SAM LAZARO: The confluence of faith and medicine, and the mission hospital itself, attracted Duke University Divinity School dean Gregory Jones to Verghese’s book. It was a timely find, just before a recent trip to discuss his church’s own mission work.

GREGORY JONES, Duke University: It becomes a shaping institution that plays a really significant role in any developing country and one that we need to pay a lot more attention to. My trip to London was actually to deal with issues around southern Sudan, and so I was struck by the significant role this hospital was playing in the novel about Ethiopia.

DE SAM LAZARO: And even though its setting seems distant, Jones says the novel’s context is very relevant to many students he sees at Duke.

Gregory Jones

JONES: I think a lot of Christians go into nursing or medicine or other health-related vocations out of a deeply formed and felt Christian vocation, but sometimes the practice of health care, in the United States particularly, often pushes those apart. And I think the novel portrays that in a really beautiful way.

VERGHESE: I joke but only half joke that if you show up in an American hospital missing a finger, no one will believe you until they get a CAT scan, MRI and orthopedic consult.

DE SAM LAZAROAll the emphasis on machines, he says, adds cost to the health care system, and comes at the expense of one of our most important rituals — a visit with one’s doctor.

VERGHESE: Rituals are about transformation. You know, we marry with great ceremony to signal a transformation. We are baptized in a ritual to signal a transformation. The ritual of one individual coming to another and confessing to them things they wouldn’t tell their spouse, their preacher, their rabbi, and then even more incredibly, disrobing and allowing touch, which in any other context would be assault. You know, tell me that that’s not a ritual of great significance. If we short-change the ritual by not being attentive, or you are inputting into the computer while the patient’s talking to you, you basically are destroying the opportunity for the transformation. And what is the transformation? It’s the sealing of the patient-physician bond.

DE SAM LAZARO: Ironically, Verghese says, research is emerging that corroborates the importance of this bond, the virtue of the Samaritan healer.

VERGHESE: We’re learning that you can have a powerful effect on patients, or a powerful negative effect on patients based on context, based on your tone of voice. They are actually associated with significant chemical changes in the brain. The Parkinson’s patients’ dopamine levels go up with a placebo. We’re now able to show that the words of comfort trigger biological reactions which are the very things that you want, and you can use drugs to get there, or you can use words of comfort to get there, which would make your drugs so much more effective. It’s an incredible insight, and you know, a couple of decades now of practicing medicine, it’s lovely to come full circle to where I started, but with the science to back it up.

DE SAM LAZARO: For Religion & Ethics NewsWeekly, this is Fred de Sam Lazaro.

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Originally published July 16, 2010

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BOB ABERNETHY, correspondent: At Harvard University, Arthur Kleinman is a medical doctor, a professor of both psychiatry and anthropology, and the director of Harvard’s Asia Center. Until 2003, life had treated him well. He was widely respected professionally, and he and his wife, Joan, a China scholar, had a happy marriage, with grown children and grandchildren—and then calamity. Joan Kleinman developed a form of Alzheimer’s disease that brought both dementia and blindness. Arthur Kleinman became her caregiver.

PROFESSOR ARTHUR KLEINMAN: It is love. It’s about the fact that you are there. This was the deal you made when you got married. The deal was to be there for that person, them for you. I helped her bathe, helped her dress, helped with feeding, and the feeling I had, I would say, was generally one of empowerment, to my—which was remarkable especially at the onset, that I just felt that as I learned to do the things and did them I felt a hell of a lot better, and I felt I was really contributing. I also felt it was self-strengthening in some way. It reaffirmed my love and my commitment to her, and over time, though, I think it drains you emotionally and physically as the requirements get greater, as you have to help your spouse out of bed, take them to the bath, make sure that they are safe in getting into the bath, getting out. You are constrained as the other person really begins to disintegrate in front of you, so my wife’s dementia led to a delirium in which not only didn’t she recognize me and the like, but she would be at times incoherent, flailing wildly, very paranoid about me and others because of the sense she couldn’t see and couldn’t understand what was happening.

ABERNETHY: But Kleinman says his wife’s essential personhood did not disappear.

KLEINMAN: The memory may go. They may not recognize who you are, may not remember from minute to minute what you said. But you can still see, in the way they respond to you, feelings, deep feelings that represent the fact that they know you’re important in their life even though they’re not quite sure whether you’re the husband or the son or what your name is and the like.

ABERNETHY: I asked, did you ever feel angry?

KLEINMAN: Yeah, absolutely, and I think that anyone who says that they’re not angry in a situation like this at times is not fully honest.

ABERNETHY: But there was a feeling much stronger than anger.

KLEINMAN: I think it’s the sadness, the sense of a deepening despair—that you realize that this is not going to go away. This is going to get worse. You realize that this is a terminal illness.

ABERNETHY: As Dr. Kleinman balanced his work and his caregiving, he says he found great meaning in the Chinese Confucian tradition he and his wife had both studied.

KLEINMAN: The deep commitment to family, the idea that family was central to everything that you did. The respect you have for somebody else—that your own humanness deepens as you engage the humanness of somebody else.

I found that that relationship became increasingly tied to my moral view of things—that I had enormous respect for her, that I felt that it was crucial for me to help her maintain her dignity. There is something remarkable about that feeling of being present with someone else, and I felt that for a long time in our relationship, and I felt that deepen as there were more acts for me to do. It was in the doing that I felt I was a caregiver. Not in thinking about it, not in talking to people about it, but actually doing it. The acts themselves I saw as moral acts.

ABERNETHY: Between the years 2000 and 2050, it’s estimated that the number of people 65 and over will more than double, and the number 85 and over will quadruple. And the longer people live, the more likely they are to suffer chronic diseases, failures of the body and the brain—to need care.

KLEINMAN: We have never seen the situation around the world, not just in the United States, look the way it is. We have left out of our thinking one of the cornerstones of society.

ABERNETHY: Kleinman recalled last year’s debate about health care reform.

KLEINMAN: How much attention was given to the nitty-gritty of caregiving, the content of caregiving? I would say almost zero, okkay, almost no attention to that. And yet this is what families are going to face in the future.

ABERNETHY: Because he had bought long-term care insurance, Kleinman was able to hire a home health aide to help when he wasn’t there. He says she was indispensable. But by last summer Kleinman had come to realize that his wife needed more care than he could give. So, reluctantly, he moved her to a nursing home.

KLEINMAN: That was the most difficult thing. That is, that I had made up my mind that I would take care of my wife until the end, and I did it for seven to eight years until a point at which I recognized I couldn’t do it anymore. I couldn’t handle—and I’m a psychiatrist—I could not handle the agitation part of it, where she became so agitated and so distressed, and she really needed a safe place to be, etc., where she would be less paranoid and less threatened by things.

ABERNETHY: But then, new questions: how close to Joan could he continue to be? How often could he visit? How long should he stay?

KLEINMAN: When you’ve been deeply in love with someone for 45 years and greatly enmeshed together, that issue of distance is a recognition that someone is dying, that this is approaching the end, that you yourself are preparing yourself for the end, and I think it’s very difficult. I think it’s very, very difficult. I found it to be extremely, extremely difficult.

Editor’s Note: Joan Kleinman died on March 6, 2011. She was 71.

Video clip of Arthur Kleinman teaching the Harvard Extension School course “Health, Culture, and Community” is provided courtesy of the Harvard Extension School. Copyright 2010, President and Fellows of Harvard College.

“You cannot understand caregiving unless you do it,” says Arthur Kleinman. “Acts of caregiving come as close to what I think religion is as I could name.” Watch more of Bob Abernethy’s conversation with him.

FRED DE SAM LAZARO: Abraham Verghese has all the credentials and degrees befitting a professor at Stanford Medical School. But he is best known and acclaimed for his writing — two best-selling memoirs and a new work of fiction that evoke a different kind of medical vocation.

ABRAHAM VERGHESE: My desire to be a physician had a lot to do with that sense of medicine as a ministry of healing, not just a science. And not even just a science and an art, but also a calling, also a ministry.

DE SAM LAZARO: His goal is to have today’s medical students aspire similarly to a calling­ as much as a career in medicine, to awaken a more basic curiosity as they sharpen their clinical acumen. These third-year medical students were studying abnormalities on a scan, specifically the prominence of certain blood vessels.

VERGHESE: (Speaking to students) This is what’s called pulmonary redistribution. Have you heard that term? It’s an early sign of heart failure. Who’s got good hand veins that I can borrow?

DE SAM LAZARO: Verghese offered a simple physics explanation of why blood vessels should not normally be visible above the level of the heart.

VERGHESE: (speaking to students) The level of her right atrium is about here. So watch what happens as I raise her hand. You still see the veins, nice three dimension, right? See how they’re flattening out? Now they are gone.

DE SAM LAZARO: The bottom line: Well before an x-ray, a doctor might spot telltale signs of disease.

VERGHESE: (speaking to students) And you see their neck veins and they’re not coughing, speaking, singing, straining, they have increased venous pressure.

DE SAM LAZARO: Increasingly, he says students and practitioners of medicine in the West rely on technology in a system that stresses cognitive knowledge and machines over the skill that comes from touch and feel.

VERGHESE: I’m the first to admit that the resolution of a hand feeling the belly doesn’t compare with the resolution of a CAT scan scanning the belly, but only my hand can say that it hurts at this spot and not at this spot. Only my hand can say that. Only my hand can say that this pulsatile mass, which might be an aneurism, is also painful, which is therefore maybe a leaking aneurism. You know, there are nuances to the exam that no machine is going to give you.

DE SAM LAZARO: It’s a theme Verghese has sounded repeatedly over the years, writing in magazines, including the New Yorker and Atlantic, and now in a best-seller called “Cutting for Stone.” It fulfills a long-held desire to write fiction, as he told this book club in Menlo Park, California.

VERGHESE: (Speaking at book club) Dorothy Allison, a wonderful American writer, she says fiction is the great lie that tells the truth about how the world lives.

DE SAM LAZARO: The setting for Verghese’s novel is far from Silicon Valley — a mission hospital in Ethiopia. It is a textured, 650-page narrative, set amid that country’s turmoil in the 60s and 70s. Its stories of medicine, doctors and future doctors at the hospital all illustrate what the author calls the “Samaritan role” of the healer. Verghese went from med school in India to Boston, Tennessee, Texas, then Stanford. He was born and raised in Ethiopia to parents originally from Kerala, India and from its Syriac Orthodox traditions. Faith was a big part of life for this and other expatriate communities in the Addis Ababa of his youth, which may unwittingly have shaped some of the novel’s characters.

Woman at Book Club: You said that what really inspired you to write the book was you wanted to write a book that would get people interested perhaps in medicine. But there was so much in the book about faith and different types of faith, and so how did you come to have so much of this, of another theme in your book?

VERGHESE: Well, you know, the honest answer is I don’t really know. It all just sort of evolved that way. And I think when you’re in medicine, you agonize over matters of faith.

DE SAM LAZARO: The confluence of faith and medicine, and the mission hospital itself, attracted Duke University Divinity School dean Gregory Jones to Verghese’s book. It was a timely find, just before a recent trip to discuss his church’s own mission work.

GREGORY JONES, Duke University: It becomes a shaping institution that plays a really significant role in any developing country and one that we need to pay a lot more attention to. My trip to London was actually to deal with issues around southern Sudan, and so I was struck by the significant role this hospital was playing in the novel about Ethiopia.

DE SAM LAZARO: And even though its setting seems distant, Jones says the novel’s context is very relevant to many students he sees at Duke.

Gregory Jones

JONES: I think a lot of Christians go into nursing or medicine or other health-related vocations out of a deeply formed and felt Christian vocation, but sometimes the practice of health care, in the United States particularly, often pushes those apart. And I think the novel portrays that in a really beautiful way.

VERGHESE: I joke but only half joke that if you show up in an American hospital missing a finger, no one will believe you until they get a CAT scan, MRI and orthopedic consult.

DE SAM LAZARO: All the emphasis on machines, he says, adds cost to the health care system, and comes at the expense of one of our most important rituals — a visit with one’s doctor.

VERGHESERituals are about transformation. You know, we marry with great ceremony to signal a transformation. We are baptized in a ritual to signal a transformation. The ritual of one individual coming to another and confessing to them things they wouldn’t tell their spouse, their preacher, their rabbi, and then even more incredibly, disrobing and allowing touch, which in any other context would be assault. You know, tell me that that’s not a ritual of great significance. If we short-change the ritual by not being attentive, or you are inputting into the computer while the patient’s talking to you, you basically are destroying the opportunity for the transformation. And what is the transformation? It’s the sealing of the patient-physician bond.

DE SAM LAZARO: Ironically, Verghese says, research is emerging that corroborates the importance of this bond, the virtue of the Samaritan healer.

VERGHESE: We’re learning that you can have a powerful effect on patients, or a powerful negative effect on patients based on context, based on your tone of voice. They are actually associated with significant chemical changes in the brain. The Parkinson’s patients’ dopamine levels go up with a placebo. We’re now able to show that the words of comfort trigger biological reactions which are the very things that you want, and you can use drugs to get there, or you can use words of comfort to get there, which would make your drugs so much more effective. It’s an incredible insight, and you know, a couple of decades now of practicing medicine, it’s lovely to come full circle to where I started, but with the science to back it up.

DE SAM LAZARO: For Religion & Ethics NewsWeekly, this is Fred de Sam Lazaro.