By June Spence

My husband’s maternal grandparents died in close succession, and the common belief among family members is that Louie had not cared to linger on after Fanny was gone. Both were in their 70s, and while perhaps not in perfect health, both led active lives, their home ablaze with grandchildren, up to the end.

Fanny’s only obvious concession to mortality her final day was to forego a luncheon she’d been planning to attend. A few months later, Louie was found in his bed, fully dressed, a broom propped nearby, suggesting he had been sweeping the floor, gotten fatigued, and lain down.

Contrasted with the multiple hospitalizations and at-times agonizing decline of my own grandparents, the swift and gentle nature of Fanny’s and Louie’s deaths seems not only enviable but remarkably rare. Barring sudden death by violence or accident, most of us face lengthy, medicalized journeys toward the end of life.

Constantly advancing technologies offer hope against disease and debility, though often at the cost of clarity on when and how to throttle back when there’s always one more round of chemo, one more clinical trial, and an array of machines and medicines to sustain basic functions.

“Hope is not a plan, but hope is our plan,” observes surgeon Atul Gawande in his unvarnished assessment of end-of-life care recently published in The New Yorker. If saving lives is the primary function of health care providers, then what is their role when cure is no longer the goal -- or at least not the only goal?

“Just to keep treating is no longer an acceptable default,” says Tony Galanos, MD, medical director of the palliative care service at Duke University Hospital. “We can keep practically anyone alive. The real question is, what kind of life do you want to live?”

Palliative medicine represents a different model of care, focusing not on cure at any cost but on relief and prevention of suffering. Here the priority is supporting the best possible quality of life for the patient and family, regardless of prognosis. Ideally, the principles of palliative care can be applied as far upstream as diagnosis, in tandem with cure-directed treatment, although it’s still associated in most people’s minds with end-of-life care.

For that reason, it may at first glance seem almost incongruous that palliative medicine is being advanced at an academic medical center like Duke, where people tend to come seeking miracles.

“People think that palliative medicine means you’re giving up, or that it’s basically hand-holding and low-tech,” says Galanos. “But it is aggressive medicine. I consider it acute care -- figuring out what bothers the patient the most, whether it is nausea, pain, confusion, or delirium, and treating that thing aggressively."

"We should never say, ‘There is nothing more we can do for you’; that comes from a curative-only point of view and abandons the patient. There is always something to do in the service of making someone feel better.”

The concept of palliative care has been gaining momentum throughout the Duke system in recent years via a robust research program, education of medical and nursing students as well as house staff, and increased inpatient services.

Duke University Hospital president Kevin Sowers, RN, MSN, says it’s vital to providing the full spectrum of care: “While we offer hope and even cure in many types of diseases, we also need to better understand the art and science of caring for people at all stages of life, including the end of life. Along disease trajectories, we need to be prepared for everything from delivering the most aggressive treatments to concentrating on managing pain at the end of life.”

There is an economic incentive for hospitals to support palliative care -- research shows significant reductions in pharmacy, laboratory, and intensive care costs -- though there’s understandable reluctance to tout such benefits. After all, accusations of “death panels” effectively shut out government funding for palliative care as national debates about health care reform took shape last year.

James Tulsky, MD, director of the Duke Center for Palliative Care, which encompasses teaching and research as well as clinical care (such as Galanos’s consult team), says that the medical community needs to push back against the death panel smears. While palliative care may save money, money is not the motivation of the care provider.

“We don’t walk into the room thinking we’re going to save the hospital money,” he says. “If we do our job right, we do save money, but the overwhelming majority of the time, what we hear from patients is how we made things better.”

In fact, new research recently appearing in the New England Journal of Medicine suggests palliative care may actually prolong life -- and a higher quality of life at that. Patients with terminal lung cancer who received palliative care upon diagnosis reported greater mobility and less pain and depression than their counterparts who did not. And, somewhat ironically, they lived close to three months longer.

Bringing Up the Subject -- Sooner

Research suggests that doctors tend to be overly optimistic in their prognoses, offering inaccurate longer survival prospects. Pile on the difficulty of initiating conversations that acknowledge the possibility of death, and the result is that too many care providers delay addressing changing care goals and pursuing palliative measures until very late in the game, if at all.

The average length of patient involvement in a hospice program, for example, is a mere two to three weeks, though studies suggest that a minimum of three to six months is needed to truly benefit.

Palliative care does not necessarily mean hospice, though hospice is a subset of palliative care. “Palliative care describes the broad field of care for patients with serious illness,” Tulsky clarifies, “while hospice is a system of care appropriate for patients with life-limiting terminal illness, defined by Medicare as lasting six months or less.”

That explicit acknowledgment of death, abetted by misperceptions surrounding what hospice care entails, can be off-putting to patients and physicians alike, says Toni Cutson, MD, physician leader of the palliative care consult team at the Durham Veterans Affairs Medical Center and medical director of Duke HomeCare & Hospice.

“A patient I talked to recently said, ‘Oh no!’ fearing we’d automatically take away all her medications and put her on morphine. Even doctors think that hospice means that no IV fluids or antibiotics are administered, but we’re often caring for patients with complex problems, and offering comfort may mean giving IV fluids, transfusions, or antibiotics in situations where we think it’s going to help.”

In fact, as Duke hospice patient Connie Kerr can attest, effective symptom management can mean significant gains in mobility and function, even as a patient’s disease continues to progress.

A year ago, Kerr was feeling overwhelmed by her advancing chronic obstructive pulmonary disease (COPD). “I was so tired, and it was so much trouble keeping up. Breathing was getting harder and harder,” she says -- so much so that it came almost as a relief when her physician, Duke geriatrician Heidi White, MD, broached hospice care.

“Physically, mentally, she’d had enough,” agrees Charlie, her husband of 51 years.

Today the mood is upbeat in the Kerr household. Connie, though reliant on a wheelchair from a recent fall and tethered to her oxygen pump, is lively, with a radiant smile. “Everybody in the family has the feeling that I’ve lived much longer from having gotten involved in hospice,” says Connie. “Maybe it’s from relaxing the stress or just knowing the nurse will be here once a week.”

“She’s like family,” Charlie says of Donna Ratliff-Walker, the primary nurse from Duke HomeCare & Hospice who oversees Connie’s care through weekly visits. “We generally laugh most of the time she’s here.”

Certain changes in Connie’s medications, made in accordance with the shift in her care priorities toward symptom management, have brought immense relief. Prednisone, for example, was something her pulmonary team had been reluctant to prescribe. “They didn’t want me to get on it because they said I’d have to stay on it,” recalls Connie. “But the minute I got a little bit of prednisone, I had a lot more energy and appetite for interesting food -- and these things help tremendously!”

Also helpful has been Connie’s “moondrops” -- the couple’s playful name for the morphine that eases the tightness in her chest so that breathing need not feel like such an epic struggle all the time.

With Connie in less distress from her symptoms, the Kerrs are able to focus on enjoying their time together. “There are so many positive things about it,” says Charlie. “We’ve always been close. There are so many things we’re both interested in. You read and share with me -- and I’m a pretty good masseur.”

“We would like to go on with our life as much as possible the way we have,” says Connie. “I want to still be able to laugh, and to see and talk to people.”

Her recent fall, which might easily have proved calamitous for an 83-year-old woman with advanced lung disease, seems more like a temporary setback. “I should be working more on using the walker instead of the chair,” she confesses. “I broke my right wrist when I broke my hip. I’ve never used my left hand; I sort of had to start from scratch.”

“You’ve taken all these things in stride just remarkably,” Charlie says to his wife with admiration. “My heavens, here you are eating with your left hand. You could say the hell with it, but you don’t.”

Agenda: No Agenda

An important function of palliative medicine is helping people define their goals -- for their care, and for the days they have left. “People are struggling with figuring out the right goals and putting them into action,” says Tulsky, “particularly when making the shift from treatment directed toward cure to treatment for comfort.”

Duke’s palliative care team, which does around 500 consultations a year and reaches into every unit of the hospital, provides expert navigation through these difficult but very necessary communications.

“We like to say that our ‘procedure’ is the family conference,” says Tulsky. “We walk into a room with no agenda; we assess without an agenda. We’re curious: we want to learn who they are, their goals, their values -- then with those things in mind, help them determine whether it’s appropriate to make a shift in the course of treatment.”

“We’re not there to convince people they should or shouldn’t be DNR,” says Galanos. “We are there to help them feel better in whatever ways they need. Our consults are labor- and time-intensive to ensure their preferences are honored.”

Nurse practitioner and palliative care coordinator Jennifer Gentry is often the first person on the team to meet the patient. “The majority of our consults are because of communication issues,” she observes. “The patient may be very ill, things are not going well, and there’s a disconnect between what the care team thinks and what the patient and family think.”

Talking to patients and families takes sensitivity and skill. “The biggest mistake is to talk too much,” says Gentry. “Start with open-ended questions: ‘How are things going?’ ‘What do you understand about the illness and treatment?’ Then be quiet and listen.”

Conflict among family members is also common, especially when there’s disagreement about what should be done for a patient who may not be able to clearly communicate his or her wishes.

“We’re assessing family dynamics the minute we walk in the door,” says Gentry. “Are people sitting together, supporting each other? You can identify very quickly who the decision-makers are, and what the cohesiveness of the family is. When people are quiet, we make an effort to bring them into the conversation. We try to get comments from everyone. Even when there’s no consensus, the one thing we can all agree on is that we all care about the patient. That’s a place to start.”

Part of providing good end-of-life care to patients and families is “helping people resolve unfinished business,” says Cutson. Delaying a turn to palliative measures or hospice care until the very end does the patient a disservice.

“In the final days and hours of life, time is focused on effectively managing symptoms, and there may not be enough time to know all the members on your care team and establish trust. Once you have that and still have some energy, you can focus on those things that are so important.”

Patients may have specific goals to meet. For example, “We worked with a gentleman who wanted to make it to his 60th anniversary, so his short-term care was directed toward that,” Cutson says. “Afterward, he wanted a different approach.”

In the case of a young mother who knew she wouldn’t live to see her children grow up, hospice workers helped her make a treasure box full of meaningful souvenirs and letters for the children to open on birthdays and other special events in their lives.

“Someone has to be very brave to do this,” notes Cutson. Such bravery may not even be conceivable to a patient who is overcome by pain and nausea and can’t get past those immediate needs, or whose care team has not yet invited her to consider what she would want in the event that treatment doesn’t work.

“A person dies once, so we have one chance to get it right,” says Camille Lambe, a nurse practitioner who teaches palliative care in the Duke University School of Nursing. “When it goes well, families are so appreciative. I get notes saying you were there, you talked with me until I had no more questions."

"When it doesn’t go well, families are devastated. They carry it for years. They remember the abrupt doctor that stood at the door and said, ‘You have terminal cancer.’ It colors the way they come to every other experience. We have to come prepared and get it right.”

Filling the Void

Offering comfort beyond the physical, addressing pain that is emotional, spiritual, or even existential -- such tasks reflect a broader view of patient care than our current medical model necessarily supports. But health care providers must deal in these larger issues to truly serve their patients, says Richard Payne, MD, Esther Colliflower Director of the Duke Institute on Care at the End of Life, which resides in the Duke Divinity School but maintains a strong partnership with the medical school.

“Once one gets beyond the challenges of symptom management, most of what concerns patients and families are issues around preparation and closure: How do I talk to my family, my spouse? What’s my legacy? If I’m a person of faith, what does this mean in terms of my relationship to God? They’re all very important questions, and they’re not peripheral to medical care, because if these matters are left unresolved, they are a tremendous source of suffering.”

In some ways, health care providers find themselves in the position of filling a cultural void. “For most of recorded human history, we took care of our loved ones who were near death not in institutions but at home,” notes Payne.

“It was once quite common for young people to have experienced physically the death of a parent or grandparent. Over the last 100 years, we’ve turned dying into a purely medical event that takes place inside hospital walls. People no longer have a sense of what it is to be near those who are dying.”

Part of the institute’s mission is to better equip all those who have that role: “We create training opportunities for doctors, nurses, and clergy to help them attend to all sources of suffering in the patients they encounter. Education in communication is a huge strategy.”

Effective communication skills can be honed through practice, but overall Payne urges the medical community “not to be as reactive and passive as we have been. Patients and families are looking to us to advance the conversations. Too often we only ask patients what they want to do, thinking that’s empowering them, but we need to be facilitators and be much more proactive in walking them through their options, making sure that they understand the risks and benefits.”

Duke pediatric oncologist Ray Barfield, MD, who also serves at the institute, suggests that care providers who want to be more fully present for their patients during their most difficult moments need to broaden their perspective.

“The ways families experience illness is really different from the way we focus on rounds or on our clinical practice. We’re biological, talking about systems, infections, chemo -- all of that’s incredibly important, but families are experiencing it from the inside; it transforms every part of their lives.”

Hospitals host miracles and tragedies on a daily -- if not hourly -- basis, and palliative care may be the one constant in the ever-shifting sands of life-threatening disease. There’s continuity in providing comfort, and a deeply comforting assurance to patients, perhaps best expressed by Barfield: “My primary goal may be to cure your disease, but I can also improve the quality of your day, at whatever stage you are in. Up to the very last day, I care about the quality of your day.”