Joanne Kenen

After flying corporate jets for General Electric for 16 years, pilot Todd Chisholm was ready to spread his own wings. He put the final touches on his financial plan, and set out to run his own business as an aviation safety consultant with a few corporate pilot gigs on the side.

Financially, he was in for a rough landing when his wife of three years, Debbie Charles-Chisholm, was diagnosed with breast cancer at age 41, and she needed her husband’s help. He put his business on hold and became a full-time caregiver for eight months as his journalist-wife went through multiple surgeries and a long, painful series of complications. He gradually resumed his own career, but still spends considerable time nurturing his wife. At one point during her chemotherapy, he shaved his own head in a gesture of solidarity and humor.

Charles-Chisholm had good insurance and a flexible employer. But the couple had always counted on two incomes to pay their mortgage and other bills. With his new venture on hold, Chisholm’s income dropped by about $50,000—at a time when their out-of-pocket medical costs were rising. They dug into savings, tightened their belts, gave up spending on a lot of the things that had made their life together so much fun. “We called it our year of living cheaply,” he recalls.

Two and a half years later, she is cancer-free, though still experiencing pain and side effects from ongoing drug therapy.

The Chisholms were luckier than some families. They had some money in the bank to cushion the financial blow. Plus, a colleague set up a website, and friends, neighbors, and family pitched in to cook, shop, and help out during the toughest times. One friend sent “brain candy,” a six-month gift subscription to 

For families living paycheck to paycheck, the financial burden of caregiving can be harder. “They are operating on fairly tight margins as it is, or they wouldn’t be doing as much of the caregiving by themselves,” says Carol Levine, director for the families and health care project at the United Hospital Fund in New York.

The financial costs of caregiving include not just the patient’s co-pays and deductibles, but lost wages and travel expenses for both patient and caregiver. There’s the time spent on insurance paperwork, researching treatment options, filling prescriptions, making special meals, managing symptoms, and scheduling and driving to appointments, says Bill Given, PhD, a professor of family medicine at Michigan State University in East Lansing. “It really takes quite a bit of time.” 

Understanding the hidden costs is crucial so that families can anticipate needs, and figure out how to plug the gaps. The quest for finding help has three tracks. One involves friends and family, similar to the network of people who supported the Chisholms. The second is seeing what kind of flexibility or support is available through the workplace. The third involves the vast, and sometimes fragmented, world of community &shy;resources, social services, church and volunteer networks, government programs, and advocacy groups such as the American Cancer Society and Patient &shy;Advocate Foundation.

In all three realms, the strategy for caregivers is basically the same: “Ask everyone you can think of. And then keep asking more people, even if it feels awkward,” says Julia Bucher, RN, PhD, an associate professor of community nursing at York College of Pennsylvania and co-editor of the forthcoming revised version of the American Cancer Society’s 

Complete Guide to Family Care&shy;giving: The Essential Guide to Cancer Caregiving at Home

Online resources such as Lotsa Helping Hands (

) make it easy to set up and organize friends and family into a caregiver support crew. Primary caregivers can ask people to share child care, bring over a meal, run an errand, or check on the patient when they can’t be there, which can help defray costs.

Cecilia Lucas, 33, took a leave of absence from graduate school at Berkeley to become a full-time caregiver when her mom, Mary, 62, was diagnosed with pancreatic cancer. Lucas’s school was flexible, rearranging her fellowship funding so she could afford to resume her studies later. 

Lucas’s mother lives in a small town near Asheville, North Carolina, but the best medical treatment was at Johns Hopkins in Baltimore. There was no way logistically or financially that the family could move to a different state for months, until some old friends offered a room in their home in a Maryland suburb for four months. 

But Lucas still had to pay rent on her California apartment while she cared for her mom. She scrambled to find a part-time job as she took on the caregiver role.

Most cancer family caregivers are employed outside the home, and some may find their employers are open to a flexible work schedule, telecommuting, or sick leave. Under the Family and Medical Leave Act of 1993, caregivers can take up to 12 weeks off. Although health benefits continue for the employee during the job-protected leave, the law does not require paid time off. It does, however, allow for paid leave to be substituted for unpaid leave. (Read more about the legal rights of caregivers in “

That leaves the maze of social services, which even professionals say is frustratingly hard to navigate.

“There is some help out there, some of which can be outstanding, but it’s fragmented,” says Diane Blum, LCSW, executive director of Cancer

. “I can’t tell you, ‘Yes, you can get this or this.’ It depends on how old you are, what insurance you have, where you live. It’s all very individual.”

A patient’s treatment center is the place to start. Most centers employ social workers who know where to turn and what the patient might be eligible for. Some centers have patient navigators to guide families, while at smaller centers or clinics, nurses can help steer families. But don’t assume the hospital or treatment center will give you all the information you need unless you speak up, repeatedly and persistently, Bucher says.

Churches and other religious organizations may also be able to help. Nonprofits focused on cancer can guide you to services and assistance programs, particularly with drug costs. It’s worth exploring all avenues, social workers say, and getting help to find the options.

Articles

How to manage the financial impact of caregiving.

Hard Times

Don Fisher was crushed when his wife, Susan Duffy, was diagnosed with sarcoma  in the spring of 2000. She was 50; they had been together nearly 30 years. They  were an unusually close and loving couple. They talked about everything. Except  her prognosis. 

Fisher, a professor in the department of mechanical and industrial  engineering at the University of Massachusetts in Amherst, liked knowing the  facts, the odds, the statistics that form the matrix of survival. Duffy, a  professor of psychology, did not.

“I think,” Fisher recalls, “she lived on hope.”

At first, her odds were pretty good—a 75 percent five-year survival rate for  her form of sarcoma. But Duffy got sicker. The doctors at Massachusetts General  Hospital recognized that she did not want or could not talk about it, and for  the most part, they matched their vocabulary to her attitude.

“They would tell her that they would take ‘very good care of her,’ ” Fisher  says. Even when they eventually eased her into hospice care at home, they found  a way to continue chemotherapy. She would lie on a mattress in the family  minivan, too sick, too weak, and too afflicted by bed ulcers to endure sitting  for the 90-mile drive to the hospital. Still, it was all about hope.

Don Fisher could talk to his wife about chemotherapy and radiation. They  could talk about their two daughters, Annie and Jenny, who were 10 and 15 at the  time. But they never discussed the end. They didn’t discuss where she would be  buried or what kind of memorial service she wanted, other than one quick comment  about wanting to thank family and friends.

She dismissed her husband’s suggestion that she leave letters for her  daughters to open someday, maybe for a graduation or for their weddings. Too  hard, she said. And it was only years later that Fisher learned she had pulled  aside that curtain of hope, at least once, to tell a social worker she hoped Don  would find someone else someday. 

The key is finding the right moment to bring these questions up, and for the  patient, family, and health care team to work through them together.  

For caregivers of cancer patients, life is a demanding balance of preparing  for the worst, while hoping for the best. It can be even harder when the  caregiver knows the story won’t end happily ever after, but the patient is  adamant about not wanting to know his or her own prognosis.

“Family caregivers want to plan, they want to anticipate, they want to know  what they have to do, how to get ready. They are driven by just the pragmatic  demands of caregiving, which are huge. It is just so much work to be taking care  of someone who has cancer,” says Anthony Back, MD, an oncologist at the Fred  Hutchinson Cancer Research Center in Seattle.

Physical caregiving may be hard, but so is the emotional work.

“Closure work is hard, in a different way,” says Back. Not all couples are as  happy and affectionate as Fisher and Duffy were; most have things to say (or  unsay) toward life’s end. But if one person won’t acknowledge that time is  running out, it makes closure even more difficult.

That doesn’t mean a degree of denial doesn’t have its place. It can even be  healthy. Ira Byock, MD, director of palliative medicine at Dartmouth- Hitchcock  Medical Center in Lebanon, New Hampshire, likes to envision denial as a spigot  on a faucet: “It allows just enough bad news to flow as you can stand or  tolerate.”

Usually, the flow changes as the patient and family adjust, striving anew for  that balance of preparation and hope. But when the spigot stays too close to the  “off” position, denial can become a hurdle. It makes it harder for the caregiver  to tackle the mundane but necessary financial and legal tasks. It makes it  harder to shift gears from aggressive treatment to more palliative care or  eventually hospice. And it can make it so much harder to do the sad, hard, but  often healing work of what Byock calls “relationship completion,” the emotional  closure and goodbyes that can yield unexpected moments of grace and clarity even  in a time of piercing grief.

Families who find themselves at polar opposites on the “facing reality”  spectrum aren’t all that common, but they aren’t unheard of, either. Usually  patients do know at some level that time is running out. Many doctors and social  workers believe people have a sense of when their health is failing, even if  they don’t articulate it.

“The dying process sort of shows you,” says Richard Hara, PhD, a social  worker at Cancer

, a nonprofit support organization for patients and  caregivers. “They know that something serious is going on, that larger questions  are there. The key is finding the right moment to bring these questions up, and  for the patient, family, and health care team to work through them together.”   

Even if most families arrive at common emotional terrain by the end of life,  they may travel there at different speeds and communicate (or fail to  communicate) in different ways.

“It seems like they are often out of sync a little bit. Family members and  patients want to know different things, from the time of diagnosis all the way  to end-of-life care,” says Back. Sometimes husbands and wives may both know the  score but each one pretends, trying to protect the other in what Byock calls “a  conspiracy of denial.”

“I can talk to a patient who will say, ‘I know I’m dying but don’t tell my  wife. It will kill her.’ Then I go out in the hall and his wife will ask me how  he is doing, and I’ll say, ‘Not very well’ and she’ll say, ‘I know he’s dying  but don’t tell him. It will kill him,’ " says Byock, whose book 

 helps guide people through difficult but necessary  conversations.

A clinician with tact, wisdom, and experience can help people bridge that  gap, and can also gently move them toward some choices and decisions about  health care proxies, advanced directives, and end-of-life care.

Lack of open communication doesn’t mean a lack of love.

“I had a patient, a middle-aged woman dying of colon cancer,” says Lidia  Schapira, MD, an oncologist at Massachusetts General Hospital Cancer Center.  “She wanted to talk about it. She wanted to choose the dress she’d be buried in,  she wanted to choose her plot. But her husband couldn’t do it. There was no  hidden agenda. There was lots of love. He knew. They even had called home  hospice. But he just couldn’t talk.”

The patient asked Schapira to help. “Not to force him to talk. But to try to  explain to him how important it was for her to have an honest and completely  sincere conversation.”

As a social worker, Hara says he tries to work on family communication early,  soon after diagnosis, to promote good communication through the course of the  disease and to avoid getting to that stressful point where everyone is afraid to  say out loud what everyone knows is true. Some cultural or ethnic groups have  more taboos about discussing cancer, or death. Some families are just more  fragile. Doctors and social workers agree the caregiver shouldn’t force the  patient to “accept reality.” But the caregiver should seek help.

“It’s not the family member’s job to give the prognostication—it’s never the  family member’s job. That is too hard,” says Back. “But if you are not sure what  to do or say, that’s a good time to ask someone for help.”

If a family isn’t comfortable talking to the oncologist, or they sense the  oncologist is not a great communicator or doesn’t understand the family’s  cultural mores and traditions, they can approach the nurse, who may know how to  best get help from a social worker, psychologist, chaplain, or other spiritual  adviser.

James Avery, MD, senior medical director at Visiting Nurse Service of New  York hospice, has worked with countless cancer patients and has developed a  seven-step program to help physicians break bad news and give patients and  caregivers what they need to plan, to prepare. Part of his process is to  explicitly ask, “How much do you want to know? Do you want to know everything?”   

Schapira says there are parameters in oncology. “If somebody is really in  denial, you better respect that denial. That person honestly cannot deal with  the information.”

Most patients, however, are not in denial, she says. “They choose to defer  accepting that they know something, or they downplay it, or they don’t want to  let you know they know. We can gently—gently&mdash;chip away at that. They may be  terrified or extraordinarily sad, but with a good approach, a good constant  presence, they will come around. And they are relieved. Relieved that they don’t  have to bear it alone.”

Don Fisher and Susan Duffy were never alone; they had a supportive family and  a close community who helped them right up to her death on Valentine’s Day 2002.

“Did she know she was dying? I still don’t know,” her still grieving husband  says. “But she was a very happy person. We had no regrets.” 

Denial places added burden on  caregivers. 

When Patients Don't Want to Know

On November 11, 2000, Mark Quasius, then 37, learned that the strange sensation in his right ear was caused by a rare carcinoma in his upper sinuses.

After a variety of treatments, including multiple surgeries on his head, lungs, pancreas, and hip bones, the prognosis for his advanced adenoid cystic carcinoma is pretty good. After consultation with Andrew Putnam, MD, a palliative care specialist at Lombardi Cancer Center and Georgetown University Hospital, his life is pretty good too. Dr. Putnam brought Quasius’s unrelenting pain from the tumor behind his right eye under control after surgeons concluded that, for now, the risk of removing the tumor outweighed the benefits.

Quasius, now 44, can’t work at his old engineering job anymore. But he can still stroll down to the pond on his 30-acre farm south of Washington, D.C., still keep himself engaged with fun fix-up projects around his home, and still appreciate every day he has “with my wonderful, wonderful wife, Beth.”

That people are living longer with cancer as a chronic disease is well known. Because of the growing field of palliative care, people, like Quasius, are also living better.

Palliative care was once a scary word for hospice. Palliative care, the art of easing physical, emotional, or spiritual distress arising from a serious illness, is still the core of hospice care but it now takes place in many other settings—hospitals, nursing homes, and, now increasingly, in outpatient cancer clinics.

Unlike hospice, palliative care patients don’t have to have a life expectancy of six months or less. They don’t even have to be dying. And they don’t have to give up radiation, chemotherapy, or surgery in order to get “comfort care.” Doctors sometimes refer to palliative care as “concurrent care” or “a continuum of care” that can start early in treatment, sometimes even right at diagnosis. The idea is to give patients what they need when they need it, no matter what their ultimate prognosis.

That means both sophisticated medical management of symptoms, such as pain and fatigue, as well as enhanced communication about patient choices. This concept fits the biological principle that illness doesn’t turn from a treatable to terminal situation overnight, but may do so gradually, or even drift back and forth.

“When we walk in, it doesn’t mean we’re not going to treat your cancer anymore. It means that here is someone who is going to focus on the quality of your life, who is going to focus on other aspects of living beside the disease,” says Dr. Putnam. “The oncologist will focus on what the oncologists do best—and want to do. But you’ll also have someone who is going to concentrate and focus on the quality of life.”

Research is now providing the hard data to show the intervention works. A growing number of studies have reported benefit in quality of life for patients receiving palliative care. A recent study conducted by nurse-researcher Betty Ferrell, PhD, RN, and her colleagues at City of Hope in California found a better quality of life and fewer management barriers related to pain and fatigue among lung cancer patients receiving palliative care compared with those who did not receive the intervention.

When Heather Thomas, 34, of Vermont, fell on her kitchen floor a year ago, breaking eight vertebrae and three ribs, her doctors “wondered why I had bones that looked like an 80-year-old woman who never drank milk,” she says. The reason was metastatic breast cancer in her liver and bones. She knows her cancer won’t be cured, but it can be treated. Palliative care at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, is helping her keep her strength, her spirits, and her sanity.

“If something comes up that I don’t understand or I don’t know who to talk to, their only goal in life is to find the answer. It’s like trying to learn a whole other language when you get a cancer diagnosis. They are my translators,” Thomas says.

Some hospices, particularly larger ones, are developing community-based palliative care programs for cancer patients outside the traditional hospice model, either because death is not imminent or because they are not emotionally ready for hospice care. But they still have pain, symptoms, and emotional issues, and a palliative care team can fill the gap, smoothing the transition to hospice in those cases where it is eventually appropriate.

Some hospices have introduced an approach called “open access,” meaning the patient does fit the standard definition of a hospice patient, including the six-month prognosis, but doesn’t necessarily have to give up treatment, at least not immediately. Though some insurance companies, including Aetna and UnitedHealth, cover open access, it isn’t available everywhere, and it isn’t offered to every patient who may want it. But for some it is a gentle bridge over a chasm between aggressive curative care and what may feel like giving up.

Open access has struck a chord,” says Carolyn Cassin, head of Continuum Hospice Care, a nonprofit in New York that offers it. “Everyone at the end of life has a right to specialized care, just like you are entitled to emergency room care if you are hit by a bus. The old-fashioned hospices defined themselves by what you could not have. They had relegated themselves to brink-of-death care. But if it’s only brink-of-death care, it’s not that useful. Open access provides a transition. That’s our core business—transition.”

Not every patient who needs palliative care gets it. Not every hospital offers it because of limited resources, and referral can come late. “There is still a mentality of cure, cut, and fix,” says Ferrell, who has been a national leader in training nurses in palliative medicine. “Too often we look at, say, the cancerous lung and forget about the rest of the person.”

Yet it’s changing. At the major cancer centers around the country, from City of Hope to Memorial Sloan-Kettering Cancer Center in New York, palliative care has become a component of cancer care for inpatients and outpatients, and insurance plans generally cover it. Some programs are more ambitious and far-reaching than others. But almost always the oncologist remains the primary doctor, with the palliative care team consulting just like any other medical specialist.

There were two paths I could travel, a path to physical healing or another path that could lead to my death. And somewhere along the line, I realized palliative care was for either option.

“When they asked me if I would be interested in seeing people from the palliative care unit, I didn’t know what to say,” recalls Patty Szostak, 53, who is being treated for a recurrence of non-Hodgkin’s lymphoma at Dartmouth-Hitchcock. “Is this a death sentence? Are you telling me I’m terminal?” But once she understood palliative care, it made all the difference, not just in her physical comfort but in her emotional and spiritual health. The Dartmouth-Hitchcock team managed her physical symptoms, but also made sure Szostak, an artist and writer who meditates, does yoga, and tends to her horses in Vermont, got massages, Reiki, and even a serenade from a harpist.

Szostak’s response to treatment has been uneven; at one point she was very ill with the cancer infiltrating her brain. “There were two paths I could travel, a path to physical healing or another path that could lead to my death. And somewhere along the line, I realized palliative care was for either option.”

Pain is usually what gets the patient to the palliative care team; that’s what initially brought Quasius to Dr. Putnam. But once patients walk through the door, palliative specialists often find other physical symptoms, such as severe fatigue, that the patient may have wrongly assumed were inevitable aspects of life with cancer. The specialist may also address the complicated family dynamics that can burden a cancer patient, or, sometimes, the rough decisions about how aggressively to pursue treatment.

“What palliative care does first of all is improve how you feel,” says Susan Lowell Butler, 64, a 10-year survivor of simultaneous breast and ovarian cancers who endured an arduous clinical trial and is now executive director of the DC Cancer Consortium advocacy group. “You tend to feel that everything you feel is a side effect of the cancer rather than of the treatment, when in fact most of those symptoms are perfectly manageable for most people. With palliative care you don’t have to fight the side effects, so you can just fight the cancer.”

Not every cancer patient will need to call in the palliative care cavalry; some cancers are easier to treat than others. “We get the more complicated constellations of physical symptoms, psychosocial, and spiritual needs,” says Janet Abrahm, MD, a palliative care physician who treats outpatients at Dana-Farber Cancer Institute and inpatients at Brigham and Women’s Hospital in Boston. “The [oncologist] has done the best he can but the person is suffering. Then they call us.”

Palliative medicine was recognized officially as a medical subspecialty in 2006 by the American Board of Medical Specialties, with growing training opportunities for physicians and nurses. Much of it involves administering state-of-the-art pain medication. Some clinics are using high-tech approaches, including various types of nerve blocks or pain pumps. But they also treat symptoms that cancer patients are all too familiar with, including neuropathy, fatigue, nausea, constipation, mouth sores, shortness of breath, and anxiety.

“We have more weapons in our armament for symptoms than the oncologist does,” says Dr. Putnam.

The palliative care team, which can involve doctors, nurses, social workers, chaplains, physical therapists, and nutritionists, can intervene in a crisis. But often palliative care can avert a crisis and let the patient avoid hospitalization and frantic trips to the emergency room, says Nessa Coyle, RN, a national leader in palliative care nursing at Sloan-Kettering. Some patients will only need palliative care during rigorous treatment; others will need ongoing assistance.

Laura Massey, 55, endured just about every side effect imaginable both before and after a stem cell transplant for chronic lymphocytic leukemia. Now in remission, she receives ongoing palliative care at Moores Cancer Center in San Diego for a host of symptoms, including chronic pain, fungal infections, and muscle weakness. She can play with her new grandson, and wants to learn to sail.

“I wouldn’t be here without the support of a million people,” she says gratefully.

Physical pain is not the only aspect of cancer pain; psychological and spiritual pain also take a toll. Family dynamics can become painfully snarled. Values can clash as families grapple with tough decisions about treatment. Palliative care can help here too.

Addressing emotional issues is a priority at Moores Cancer Center, where the palliative care team falls under a larger “science of caring” umbrella. All patients are assessed at the outset; certain emotional red flags trigger a palliative care consult, sometimes even if the physical prognosis is fairly good, says Kathryn Thornberry, LCSW, a social worker who is part of the Moores palliative care team.

“You’ve got to assess cultural, emotional, and psychological issues, as well as values,” says Thornberry, who has worked with families of various ethnicities and religious beliefs as they set goals of care. “You have to help the family understand that it’s the patient’s decision. Sometimes they think the whole family gets to vote.”

Moores is a trailblazer in creating the continuum. Like many of the top cancer centers, patients can go back and forth as needed between the Moores outpatient clinic and the adjacent teaching hospital. But Moores has an unusually close relationship with San Diego Hospice. Some doctors work in both settings, treating patients who need support while they fight their cancer, as well as helping patients with a grimmer prognosis transition to hospice.

Usually the palliative care team leaves decisions about treating the disease to oncologists since they know more about the specific patient’s disease and available therapies, says Neal Slatkin, MD, director of palliative medicine at City of Hope. But, he says, sometimes the palliative team has a perspective the oncologist may lack, and can work with oncologists to review goals of care and take another look at what outcomes are realistic to expect. No one ever tells the patient what to do, but they make sure the communication is clear and patients know what’s going on. “It can be very hard for the oncologist who has been treating the patient for years to stop. They care too,” says Sloan-Kettering’s Coyle.

When she was preparing for a stem cell transplant, Patty Szostak felt that concern from the oncologists and the palliative care team at Dartmouth-Hitchcock. “I get scared. I do get scared,” she confesses. “But I am able to feel joy. And I still have a mental image of myself at age 90 in my garden with the cats running around, and me pressing seeds into the ground. That’s the picture I have. And I’m not giving up on it.”

Palliative care is catching on in centers across the country, improving quality of life for patients along the way.

The New Specialty in Cancer Care

Oncologists can and do treat cancer pain, but patients with severe, intractable, or chronic pain should seek help from a palliative care team, pain specialist, or interventional anesthesiologist. Sometimes a psychologist or social worker may also become involved because emotions, stress, and coping styles play a role in pain, says Ann Berger, MD, an oncologist and palliative care physician in Bethesda, Maryland, and the author of 

Specialists have many techniques they can recommend, ranging from heat packs and acupuncture to surgically implanted drug delivery pumps and precision nerve blocks. Pain may be caused by the tumor itself or by treatment, including radiation, chemotherapy, or surgery, that has caused nerve damage or other painful side effects.

Medication is almost always part of pain management, and some patients may need two drug regimens, one around-the-clock medication to stay in front of chronic pain and one fast-acting medication to counter sudden and intense episodes of breakthrough pain.

Sometimes doctors use a cocktail of drugs, including non-narcotic medications that can act synergistically, or they “rotate” opiates, switching from one to another if a patient develops tolerance. The goal is to keep pain under control so patients can concentrate on fighting their cancer, not their symptoms.

“We usually start with an opioid the patient has used before and found effective, without significant side effects,” says Janet Abrahm, MD, of Dana-Farber Cancer Institute in Boston. “If they’ve taken oxycodone after a wisdom tooth extraction, for example, or morphine after surgery, we’ll start with that. Since each person is unique, we may have to try a variety of opioids to find the one that is most effective with the fewest side effects, or that comes in a form that the patient prefers—a patch, for example, rather than pills that deliver eight or 12 hours’ worth of drug.”

When necessary, Dr. Abrahm says they work with insurance plans to make sure the patient will be able to get the right drugs, but that’s usually not a barrier for cancer pain.

One of the biggest barriers to pain control comes not from the doctors or insurers, but from “opiophobic” patients who are reluctant to take powerful painkillers that have social stigma. Some clinicians and researchers report increased concern about addiction in elderly patients and by ethnic minorities, a concern experts say is misplaced. It is extremely rare for a cancer patient to develop an addiction to a narcotic or opiate that is correctly prescribed (unless they have a history of substance abuse), says Dr. Berger.

Patients may also shun drugs that make them drowsy, but the sleepiness side effect usually wears off within a few days. Other side effects, such as constipation, can be controlled with their own remedies. Whatever the issue, patients should talk to their doctor about solutions or alternatives.

For When It Hurts

When Kelly Letsinger, MD, attended medical school in Louisiana, she was always getting in trouble for climbing in bed with her patients. “I didn’t actually get in the bed,” she explains. “I just sort of sat down and scooted next to them.” When the time came to choose a specialty, she realized she needed a field that would be very hands-on.

As an intern, she treated a seriously ill elderly woman. She inserted the central lines, got the machines in place, and was proud and relieved when the patient survived the night. But the next morning, the horrified family told the young doctor, “She would never have wanted to be like this.” Dr. Letsinger had made correct technical decisions, performed the correct procedures. “But I never thought about the big picture, the whole patient,” recalls Dr. Letsinger.

The experience stuck with her, and after her internal medicine residency at Virginia Commonwealth University, she signed up for an additional fellowship at the Thomas Palliative Care Unit of VCU’s Massey Cancer Center.

Tom Smith, MD, who runs the unit, is an oncologist who in the 1980s set out to learn more about managing symptoms and family dynamics. He became a leader in the field now known as palliative medicine, and a mentor to many doctors and nurses—both those in palliative care and those reshaping oncology to include training in breaking bad news, goal setting, and pain control.

Dr. Letsinger’s timing was fortuitous. While she was training in 2006, the American Board of Medical Specialties officially recognized palliative medicine as a subspecialty—an acknowledgment doctors say will give the field more exposure among medical students. Dr. Letsinger, now a palliative care physician treating cancer and other patients at Akron City Hospital, will be among the first young doctors to take the boards this year.

Official recognition gave a boost to the specialty, but there are still regulatory and institutional barriers. The medical system generally pays doctors who perform procedures—chemotherapy, surgery, and the like&mdash;a lot more than they pay doctors who spend hours coordinating care or running “family meetings.”

Financing the training is a challenge. Some hospices are training young physicians, but they can’t tap into federal funds for graduate medical education, according to Cameron Muir, MD, past president of the American Academy of Hospice and Palliative Medicine, who treats cancer patients through Capital Hospice’s palliative care partnerships near Washington, D.C. And with the number of training slots fixed under federal formulas, hospitals are reluctant to expand palliative care fellowships if it means cutting something more lucrative, like cardiology, says Diane Meier, MD, director of the Center to Advance Palliative Care in New York.

Still, even without federal changes, palliative care is growing. Patients are demanding it, and physicians like Dr. Letsinger have their hands outstretched to supply it.

Physicians and medical students are now being trained in palliative medicine.

Joanne Kenen

Hard Times

When Patients Don't Want to Know

The New Specialty in Cancer Care

For When It Hurts

Doctors in Training

Latest News