Joanne Kenen: All Publications, Events and Press

Is It Time for Malpractice Reform?

Erin Drankoski — Fri, 20 Nov 2009 10:12:00 -0500

Year after year, Republicans try to pass legislation that would limit medical malpractice awards. Fix the tort system, they argue, and we fix rising health-care costs. And year after year, Democrats resist placing arbitrary caps on awards to people who may have suffered from an egregious medical error. The fight plays out like a predictable old Western -- good guys versus bad guys. Depending on your politics, the villain is either the greedy doctor or the greedy trial lawyer.

Health reform invites a fresh look at malpractice. The Republican tort reform

Health Care Debate | The Hastings Center

Erin Drankoski — Tue, 06 Oct 2009 14:18:00 -0400

A Matter of Life and Death | Flyp Magazine

Erin Drankoski — Thu, 17 Sep 2009 12:31:00 -0400

Joanne Kenen of New America Foundation interviews with Flyp Magazine about the prevalence of palliative care in U.S. hospitals. ... Original Article

More Baucus Buzz | Kaiser Health News

Cecille Isidro — Thu, 17 Sep 2009 11:30:00 -0400

Joanne Kenen of the New Health Dialogue posts a video from Linda Bird Johnson Robb, invoking the 'unfinished business' of her father, President Lyndon B. ... and more »

Can Healthcare Blogs Fill the Gap Left by Mainstream News Coverage? | PBS MediaShift

Erin Drankoski — Fri, 04 Sep 2009 13:28:00 -0400

[Paul Testa] and Joanne Kenen write the New Health Dialogue Blog for the New America Foundation, a think tank. "I think part of it, with the blogs, is that there is a ... Original Article

'Frequent Fliers' Add Billions to Hospital Bills

Cecille Isidro — Tue, 30 Jun 2009 09:16:00 -0400

Doctors call them frequent fliers.

They are the patients who leave the hospital, only to boomerang back days or weeks later. They have become a front-burner challenge not only for hospitals and doctors but also for those trying to rein in rising costs.

Typically elderly and suffering from the chronic diseases that account for 75 percent of health-care spending, their experiences of being readmitted time and again reflect many of the deficiencies in a fragmented, poorly coordinated health system geared toward acute care.

Health Reform

Cecille Isidro — Sun, 01 Feb 2009 16:22:00 -0500

Health care reform has once again returned to the national “to-do” list, with politicians of all stripes calling for action. Historic parallels with the early 1990s are striking. The economy is weak, health care costs are high and rising, and an anxious middle class is feeling the squeeze. Facing what could be a major recession, states need to trim spending, and businesses see health costs as undercutting their ability to compete globally.^[1],[2]

Hospice Polishes Its Image

Cecille Isidro — Fri, 16 Jan 2009 14:40:00 -0500

Eleanor Browning lived a singular life, traveling into her 80s to places like Bhutan and Afghanistan. In 2007, at age 96, she also died a singular death, and in so doing, offered a compelling case for what hospice care aims to be for people nearing the end of life.

The Cost of Doing Nothing on Health Care

Cecille Isidro — Fri, 12 Dec 2008 10:50:00 -0500

President-elect Barack Obama and his new health reform chief Tom Daschle made clear on Thursday that even amid tremendous economic crisis, their New New Deal would take on that persistent piece of unfinished business from the Old New Deal -- health care.

"Some may ask how at this moment of economic challenge we can afford to invest in reforming our health care system," Obama said. "And I ask a different question. I ask how can we afford not to."

Making Practices Perfect

Cecille Isidro — Tue, 26 Aug 2008 11:58:00 -0400

The waiting room of Ramona Seidel's family medicine practice is empty, and she works hard to keep it that way.

After several years in a traditional suburban group practice that blended pediatrics and family medicine, Seidel quit to start her own micro-practice in Annapolis: a low-overhead, high-tech office that gives her more control over how she treats patients and more time to spend with them. She's happier. Her patients are happier. And she's pretty convinced they are healthier having a physician who knows them well.

"It's more friendly; it's personal. She's very good about giving answers. It feels comfortable talking to her," said Ronald Porciello, 41, a contractor with a family history of high blood pressure who has been Seidel's patient for seven or eight years. He liked her at her old practice. He likes her better now.

Patient-centered care, chronic disease management, self-care and medical homes are all buzzwords in health policy circles these days, in the midst of the national dialogue about quality and systemic reform. But countless doctors, generalists and specialists alike, are moving ahead on their own, reinventing their clinical practices and finding more-effective and more-fulfilling ways of practicing medicine.

"I knew there had to be answers, ways of improving and changing," said Anna Maria Izquierdo-Porrera, who until recently was the medical director for two Spanish Catholic Center clinics serving poor immigrants in Adams Morgan and Langley Park.

Frustrated by the long waits and other barriers to quality care that her patients were facing in the crowded clinics, Izquierdo-Porrera began plowing through quality improvement data looking for solutions. Eventually she raised the money to enroll in a program, sponsored by the Institute for Healthcare Improvement, where she learned how to apply business techniques to a busy, stretched clinic. The initial results were impressive.

The clinics introduced computerized medical records that help track patients with chronic disease. Waiting times were reduced, although not quite as much as Izquierdo-Porrera would like. Patients get appointments fast, often the same day, and a single clinic visit may include follow-up tests, consults and referrals to specialists, including several who volunteer at the clinics. This efficiency is crucial to low-wage workers who might have difficulty missing work for health appointments and might delay getting the treatment needed for chronic conditions such as diabetes and high blood pressure.

"If a rich person wouldn't be caught dead there, neither should a poor person," Izquierdo-Porrera said. She recently left the clinics to try to develop a program that will bring similar changes to clinics and practices in other low-income and under-served populations.

"The way the average office practice still works, it's almost indistinguishable from the early 1900s, minus the computer screen," said Donald Berwick, president of IHI. "We're practicing horse-and-buggy medicine in the space age." Getting rid of waits, using e-mail and telephone consults, improving efficiency for doctor, nurse and patient frees up time for delivering care.

"The same things that frustrate patients frustrate the doctor. The dropped balls, the long waits, the missed communication, the poor communication," said Berwick, noting that he can order a pizza over the Internet but has to visit a doctor to get a prescription.

The micro-practice is only one of several models IHI and other quality-improvement groups use, but it's the one that Seidel thrives in. A mother, she works two-thirds of the time that her Bay Crossing Family Medicine office is open; two other working-mom doctors split the rest of the schedule. Instead of an army of nurses and clerks, they have one part-time office manager. Seidel is building Bay Crossing slowly, striving to balance the supply of her time and the demands of her patients in a way that keeps her waiting room empty.

When patients arrive, there's no checking in at a front desk, no filling out repetitive forms, no sitting around waiting. They tap an old-fashioned bell, and Seidel comes out to greet them. The magazines in the waiting room aren't dog-eared; no one is here long enough to read them. If a book on the shelf -- they're mostly about parenting, nutrition and health -- catches a patient's eye, he can sign it out: That's the only part of the practice still using a paper filing system.

Part of the allure is control. "When I want to change something, I just do it," Seidel says. But she is also convinced that she has more time to do preventive medicine, control chronic diseases, help patients quit smoking, watch their weight.

Porciello knows the consequences of not managing his blood pressure. His grandmother died after suffering from hypertension at 56. Yet he slacked off recently about monitoring his pressure, and he has been skipping some morning doses of his medication. In a traditional practice, Seidel said, she'd probably gently chide him to do better. Here, they took the time to talk out the problem and brainstorm a solution.

His work schedule had been more erratic than usual; he was sometimes rushing to get out of the house by 5 or 5:30 a.m. That meant he bypassed the kitchen, where he kept his meds. Moving the pills next to his toothbrush might solve the problem.

"Even when I'm in a hurry, I'm always going to brush my teeth," said Porciello, who gets e-mail reminders from Seidel when he's due to come in, after Seidel herself gets an alert on her laptop from the electronic medical record system. For patients who aren't so comfortable with e-mail, she'll send a note or call.

When patients have questions, they can call or e-mail her 24-7. Occasionally -- for instance, when making sure an elderly patient is tolerating a drug without side effects -- Seidel uses a computer link to the patient's home that allows her to check the person's status, although she'll bring the patient in if she thinks a face-to-face visit is in order.

She lives five minutes from the office and comes in when necessary at nights or on the weekend. Once she coordinated the Saturday sports and carpool schedule of her own three kids with the schedule of a mom who was worried about one of her own children. They rendezvoused at her office between soccer and lacrosse, just long enough for Seidel to check that the child had an ordinary sore throat and had not caught strep.

That doesn't happen often. Since she's taking care of patients' needs as they arise during the day, she doesn't get a flood of off-hour calls. By being available, she can not only reassure patients, she can often keep them out of the ER at night -- or tell them, yes, those chest pains are alarming, and you should dial 911 immediately.

Seidel earns less than in a traditional practice, partly by choice. Gordon Moore, who helped develop micro-practices in Rochester, N.Y., before his recent move to Seattle, said that's not true of all micro-practices, although he has identified "dead zones" where the model won't work because of high local costs and low insurance payments.

Seidel takes Medicare and she is a network provider in a few health plans (including one for Medicaid), but many patients see her "out of network," paying upfront and getting reimbursed by their insurer. Despite that bell in the waiting room, it is not a "concierge" practice. There are no annual fees, and she's affordable for middle-class patients. She takes new patients, but carefully, not wanting to throw her micro-practice off balance.

"It's a little more money," said Anne Agnoni, who had brought in 18-month-old Santino, the youngest of her four sons, for a checkup. "But she spent 30 or 45 minutes each with my older sons, and that was just the camp physical. I have to pay a $100 diagnostic fee just for my mechanic to look at my car, never mind repair it. With Ramona -- I mean, Dr. Seidel -- she's compassionate, and my kids and I feel comfortable. She treats you like you're one of her own."

Joanne Kenen in Health Care Policy and Marketplace Review | Health Wonk Review

Communications — Wed, 06 Aug 2008 10:16:00 -0400

(Health Wonk Review)--What to do about Medicare and its many challenges? Joanne Kenen gives us a summary of the Medicare Conference recently ran in Washington in her post, "REFORM: Medicare versus Cassandra" at the "New Health Dialogue" blog.

Senators Don't Lead Such Charmed Lives

Cecille Isidro — Tue, 01 Jul 2008 07:16:00 -0400

They’ve lost loved ones to plane crashes and suicides. They’ve survived polio and torture. They’ve had coworkers gunned down. They get diagnosed with brain tumors.

It sounds like an Oprah reunion, but these are members of the United States Senate.

Many people think of the Senate as a place filled with millionaires who lead charmed lives. In reality, their personal lives seem less charmed than the lives of many Americans.

Everyone experiences sadness in life -- a broken marriage, a serious injury, the deaths of loved ones. That holds true for politicians too, but a surprising number of senators have suffered an extraordinary tragedy in their lives.

Even in an era of partisanship, senators come together in times of grief. There was an outpouring of emotion among his colleagues when Ted Kennedy was diagnosed with a brain tumor in May. Kennedy, the dean of Senate tragedy, has often been the hand that reached across the aisle in others’ times of sorrow.

Shared experiences of loss and compassion are one of the few ties that still bind, influencing how senators relate to constituents and how they speak to one another amid intense political polarization.

“People have a lack of understanding of senators,” Republican Rick Santorum said as he walked nostalgically down the Senate corridors shortly after losing his reelection bid. “They see us like these statues,” he said, gesturing at the marble around him.

“But we are human. We have personal lives. And we do learn to see each other as people,” said Santorum. One of the first phone calls he got after the death of a premature baby was from Kennedy, whom Santorum at one time viewed as the devil of liberalism incarnate.

Pilgrimages of Faith

Politics was not always as bitter as it is today. Historians and longtime senators say that for most of history there were more votes across party lines, more camaraderie. Senators lived here with their families. They attended the same churches, knew one another’s wives and children. They cut legislative deals on the golf course.

In the late 1950s, jet travel made it easier for senators to return to their home states. The Dirksen and Hart office buildings were added, and the number of staffers exploded, limiting the interaction of senators with colleagues. Spouses embarked on careers, leaving less time for socializing. Fundraising demands kept lawmakers on the road. “We get to know each other only on trips now,” says Connecticut Democrat Chris Dodd, recalling the lively conversations and bipartisan laughter around his parents’ table when his dad was a senator in the 1950s and ’60s.

Now instead of the golf course or the poker table, senators have the prayer breakfast -- not the flashy one with the motorcades reported on TV but the quiet one that convenes in a private dining room in the Capitol every Wednesday morning, a tradition that dates back at least 40 years. No staff, no cameras, no spin. Just what Senate chaplain Barry Black calls “an opportunity to engage in judicious self-disclosure.” Members say it gives them a chance to see one another as people.

“It’s very private, very bipartisan,” says Tennessee Republican Lamar Alexander. “Each week, a member tells about his or her life.”

About 15 to 20 senators attend nearly every meeting, while another dozen drop in frequently. Many others, even those not publicly thought of as spiritual or religious, come now and then or when they are invited to “sum up their faith pilgrimage,” says chaplain Black.

“Friendships are formed,” he says. “And certain stereotypes are eradicated.”

'You'd Be Really Shocked'

Some Senate tragedies are well known. Democrat Robert Byrd has spoken of the aunt and uncle who took him in as a baby after his mother died in the 1918 flu pandemic. Weeks after Delaware Democrat Joe Biden’s 1972 election, his wife and 13-month-old daughter were killed in a automobile crash.

Oregon Republican Gordon Smith turned personal grief into a mental-health crusade after his son hanged himself the day before his 22nd birthday. Pete Domenici, a Republican from New Mexico, has agitated for better health insurance for mental illness after going public with his daughter’s schizophrenia.

Among Senate leaders, Harry Reid’s miner father killed himself, Dick Durbin’s dad died of lung cancer at 51, and Mitch McConnell contracted polio at age two and was not allowed to walk for two years.

The scars don’t stop at the leadership level. Alaska’s Ted Stevens, the senior Senate Republican, walked away from a plane crash in 1978. His wife, Ann, was killed. Maine Republican Olympia Snowe, orphaned by nine and widowed at 26, eventually remarried only to have a stepson she adored collapse on a Dartmouth baseball field with a fatal heart defect. Maryland’s Ben Cardin lost his 30-year-old son to suicide. Ohio Republican George Voinovich’s nine-year-old daughter, Molly, died when she was hit by a car in 1979.

California Democrat Dianne Feinstein had barely gotten over the trauma of losing a husband to cancer in her early forties when two colleagues were assassinated in San Francisco’s city hall. She was stained with Harvey Milk’s blood as she tried to find his pulse. A young Jay Rockefeller was dating the woman who would soon become his wife when her twin sister was stabbed to death in her bedroom in a murder that remains unsolved after 40 years.

Former senators have their stories too. John Edwards and Mike DeWine lost children in car accidents; the Edwards family is now dealing publicly with wife Elizabeth’s incurable breast cancer. Lincoln Chafee had a sister die in a horseback accident; Don Nickles’s father committed suicide. Conrad Burns’s teenage daughter died of carbon-monoxide poisoning.

Those are the stories that have been revealed. Behind closed doors, chaplain Black says, other tales are told. “You’d be really shocked,” he says.

All the Doors Get Opened

Black isn’t sure if the Senate has a disproportionate number of losses or whether, as a pastor, he hears more about human suffering. But he’s convinced that the nature of high-stakes decision-making leaves lawmakers far more thoughtful and that their stressful jobs, with choices about war and peace -- or life and death -- leaves them more “spiritually vulnerable” than the public would imagine.

A generation ago, many of these stories would not have unfolded so openly. A senator was typically the strong, silent type. If he had a personal trauma that was known, it may have been a war wound. Daniel Inouye, the Hawaii Democrat who lost an arm on an Italian battlefield in 1945, is the last of the disabled-warrior senators of his generation. John McCain’s slightly off-kilter gait is a reminder of his torture as a POW in Vietnam.

When personal revelations were unavoidable, they came in a subdued press release, like the news in 1986 that Jake Garn, then 53, had donated a kidney to his diabetic adult daughter. Personal disclosures were rare. When another former senator, Florida Republican Paula Hawkins, described at a 1984 Senate-sponsored conference on child abuse her own abuse by a neighbor, “people went nuts,” recalls Chris Dodd.

That was before Bill Clinton brought his confessional style of politics to town and Oprah Winfrey and others encouraged soul-baring on TV. The press, in a trend that sharpened after disclosures about the Kennedy presidency and Watergate, also redefined the line between public and private lives.

Senate associate historian Donald Ritchie believes that sports coverage has contributed to the way we now see politicians. Two network news executives, Roone Arledge at ABC and Van Gordon Sauter at CBS, had made their names as sports producers, introducing personal narrative about athletes. If Olympians didn’t have a dying parent to inspire them or a career-jeopardizing accident to rebound from, “they didn’t get much coverage,” Ritchie says. The up-close-and-personal approach carried into news and into politics.

“There is an expectation now -- we want to know what a candidate is like,” says Candice Nelson, a political scientist at American University. Confession or disclosure is the flip side of the more aggressive and intrusive press coverage: “It’s almost like the politicians were saying, if you are going to criticize me for doing those things, then also let me tell you the personal stuff that I can connect with my constituents, or that have hurt me, that have been painful in my life.”

Take former senator Dale Bumpers. The Arkansas Democrat was 70 years old and into his third decade of public service when, to borrow a phrase from fellow Arkansan Clinton, he let his colleagues feel his pain. During a 1995 debate on highway safety, he held the Senate spellbound recounting the day his teetotaler parents were heading home after checking their spinach crop.

“They were on a narrow highway with no shoulders, and they came up over a slight hill, just a slight incline, at about dusky dark -- the wrong time, wrong place,” said Bumpers, who was attending law school on the GI Bill at the time of the accident. A drunk driver hit their vehicle. Both parents died of their injuries.

“We’re much more open now, and I think that’s good we talk about our problems,” says Iowa Democrat Tom Harkin, who has served since 1985.

Harkin is more skeptical than many of his colleagues that the new openness can mitigate the damage caused by modern partisanship, but he does acknowledge that shared experiences can lead to openings for bipartisan initiatives. “The personal experiences can lead you to an issue, and then you find others who share it,” he says.

Harkin and former Florida Republican Connie Mack worked together on bills aimed at preventing and treating cancer; both of their families have endured more than their share of the disease. Sensitized to the discrimination his deaf brother, Frank, faced, Harkin also partnered with Bob Dole, a disabled World War II veteran, to pass the Americans With Disabilities Act in 1990. Both Dole and Harkin consider the ADA among their proudest achievements.

Gruff conservative Pete Domenici found common cause with the loquacious liberal Paul Wellstone on mental-health-insurance parity before the Minnesota Democrat died in a plane crash in 2002. Domenici by then had gone public with his daughter’s schizophrenia; Wellstone’s brother also suffered severe mental illness.

After Byron Dorgan, a Democrat from North Dakota, heard Mike DeWine, a Republican from Ohio, reflect on daughter Becky’s fatal accident, Dorgan confided the story of his daughter Shelly, a newlywed who died at age 23 after a heart operation that should have been routine. For the next 14 years, until DeWine was defeated in 2006, these two were the Senate’s go-to guys on any bill involving organ donation.

“There are only 100 of us. You find that you share the same problems; you share, you know, the same emotions,” DeWine said before leaving the Senate. “And you find that nobody is worthy of being demonized.”

'A Different Kind of Life'

For some senators, tragedy early in life was a force that propelled them into politics.

At age 11, Utah Republican Orrin Hatch lost a big brother in World War II -- an experience shared by Kennedy, among his dearest friends in the Senate.

“It pushes me,” says Hatch. “I’m making up for my brother’s death. I’m fulfilling a mission for Jesse. Every day I think about him, about being here for him and for my parents.”

Florida Republican Mel Martinez believes that the four teenage years he spent in foster care in Orlando, separated from his parents after the Cuban revolution, sharpened his understanding of community. Oregon Democrat Ron Wyden says he has dedicated much of his career to healthcare because of all the families he saw “get jostled and pummeled by the system” in the 30 years that his brother struggled with schizophrenia.

Here in Washington, Olympia Snowe doesn’t talk much about her early life, but back home with constituents, particularly young women, she is more apt to talk about her mother’s death when she was eight, her father’s when she was nine, her first husband’s fatal car accident when she was 26, and her stepson’s death after his collapse on the ball field.

“Early on in my life, I realized that I had two choices -- either allow myself to become overwhelmed by tragedies or learn something from them,” she told at-risk girls at a residential center back in Maine one summer day.

For Gordon Smith, tragedy almost had the opposite effect, nearly pushing him out of politics. After his son’s suicide, Smith was overwhelmed by the support he had within the Senate. Then–majority leader Bill Frist adjusted the vote schedule around the funeral, and six senators attended the service in a Mormon chapel on a hilltop in Pendleton, Oregon. Among them was his fellow Oregonian, Democrat Wyden, whose schizophrenic brother had recently died after a decadeslong struggle.

Despondent, Smith had trouble seeing purpose in the Senate and nearly quit. When he eventually was reenergized politically, he was less ambitious in terms of his party’s hierarchy and more moderate. He dropped a plan to seek a Republican leadership post, threw his energy into passing legislation to prevent teen suicide, and fought fellow Republicans over Medicaid budget cuts that would have hurt mentally ill people.

“A public life is a different kind of life,” says Dorgan, who still keeps in his office the white Bible that Hatch gave him after his daughter’s death. “We all live life on a tightrope -- but we are living it out in public.”

That can put politics in perspective.

“People around here talk about having to take a tough vote,” says Dorgan, who also lost his mother in an accident when police were chasing a drunk driver. “But some of us know what ‘tough’ really is.

The New Specialty In Cancer Care

Ron Tang — Wed, 02 Apr 2008 07:50:00 -0400

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.

Getting Access

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.” (Ferrell talks about barriers to palliative care in this issue’s "Speaking Out.")

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.

“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 as the Starting Point

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 (see sidebar). 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.

Doctors in Training

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 -- 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. -- Joanne Kenen

“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.

Family Communication

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.”

Health Care Reporting Guide for Journalists

Health Policy — Tue, 04 Mar 2008 11:08:00 -0500

For reporters new to the health beat -- or for political or business reporters who need to delve into health policy now and then -- the topic can be daunting. Luckily, there are many, many resources on the web, useful whether you are in Washington or around the country... If you find yourself drowning in jargon and acronyms, it helps to take a breath and remember that health care is about people, and that it affects every one of us, and everyone we care about.

This issue brief discusses three common health care concepts: