Returning quality to life

Brian Stauffer - returning quality to life illustrations

by Mike King, illustrations by Brian Stauffer

Palliative care offers comfort and emotional support to those coping with critical illness.

She is 33 years old, unmarried, estranged from her immediate family, and raising two small children by herself.

A few hours ago she found out she has stage IV, metastatic breast cancer.

The prognosis is not good—maybe a year, perhaps a little more, to live. Then again, targeted chemotherapy and other treatment alternatives for advanced stage cancer patients have improved remarkably in recent years, and it could be she will beat the odds.

From a clinician’s standpoint, her treatment team needs to know what she wants them to do. How aggressive in combating the cancer does she want them to be?
But from the patient’s point of view, the questions she faces are more profoundly personal and, to her, more important: Who will take care of me? Who will take care of my children? How sick am I going to be? How much pain should I expect? What happens if nothing works and the cancer spreads even faster?

In American medicine, doctors have compiled reams of data and effectiveness studies on the therapy options that might help her answer the clinicians’ set of questions. But on the questions that matter most to her, American medicine can, at times, be woefully inadequate.

Thankfully, that appears to be changing.

Medical science is re-examining the important role that palliative care—pain management, emotional support, and other services not aimed at the underlying disease—can play in the practice of clinical medicine. Palliative care consults are becoming more routine for patients with advanced forms of disease where survival is often measured in months instead of years. And increasingly, patients and physicians alike are turning to palliative medicine as a vital part of an overall treatment plan to combat chronic, debilitating diseases that may not be immediately life threatening.

Care that belies the “death panel” image

The combination of aggressive therapy and palliative care intuitively makes sense. Patients who feel better, do better.

But for years—because many associated palliative care with “giving up” in the fight to beat cancer, heart disease, Alzheimer’s, and other killers—the common perception was that trying to control the patient’s pain and providing emotional support amounted to the first step toward hospice care. Discussion of these topics with some patients was deemed premature at best and inappropriate at worst. Even last year when physicians, economists, and ethicists raised these topics in the context of public policy—by suggesting during the health reform debate that Medicare routinely should pay for palliative care consults—some politicians rebuked them for favoring “death panels” for the elderly.

The reality is much different.

Sigy Jacob

Sigy Jacob 

When Emory palliative care physician Sigy Jacob, who leads a palliative care team at Emory University Hospital (EUH) Midtown, met the young breast cancer patient, one of the first clinical steps she prescribed was simple—reconnecting the patient to her family.

“Her family is local, but she is hesitant to have them involved with her care,” she says. “Patients and families struggle when loved ones are diagnosed with a life-threatening illness. We help them understand that they are not alone, aid them in managing symptoms, and assisting with psychosocial and spiritual challenges.”

Similarly, in the same week that Jacob was meeting the breast cancer patient, her interdisciplinary team was working with an 82-year-old heart failure patient to make sure the patient’s elderly sister was confident she could care for her at home. Palliative care often is about taking care of families as well as patients. “We meet patients where they are and walk the journey with them. That can include discussions about options for end-of-life care, if appropriate,” Jacob says.

EUH Midtown, Emory University Hospital, Grady Memorial Hospital, and the Atlanta V.A. Medical Center—all staffed by Emory physicians—are among a minority of hospitals nationwide that offer certified palliative care services. Additionally, Emory’s medical school was recently approved by the Accreditation Council for Graduate Medical Education to sponsor a one-year fellowship for residents in hospice and palliative medicine. (There are two fellows enrolled this year.) Emory emergency medicine physician Tammie Quest, who also has certification as a hospice and palliative care specialist, is interim director of Emory’s program.

The palliative team usually includes physicians, nurses, nurse practitioners, outpatient social workers, an outpatient psychiatrist, and a chaplain. The team collaborates with the oncologists, cardiovascular specialists, neurologists, and surgeons who treat the underlying causes of a patient’s illness.

Helping patients decide what they want out of care

Tim Buchman

Tim Buchman

Team members are careful not to put themselves in a position to seem as if they are recommending what medical decisions patients should make, Quest says.

But their role often involves bridging the gap between the emotional expectations of the patient and family and the very real, predictable realities of what medicine can and can’t do. The palliative care team navigates daily through these turbulent streams by helping both physicians and families understand what the patient wants and how best to provide it.

Emory’s hospitals are in the process of implementing a new standing policy. It would require physicians who are admitting patients likely to be in the ICU for a week or more to meet with patients and their families to discuss the patient’s goals for care.

“What we can do is provide some clarification about what is possible and what is probable,” says Emory critical care director Timothy Buchman. “We also can help illuminate the difference between hope and reality.”

That’s why it is so important to know what the patient wants to do if critical care isn’t working, if it is causing extreme pain, or if there is an unanticipated medical complication that renders more treatment futile. Discussing such topics when the patient enters the ICU is “a much better strategy than waiting until we are in the middle of a crisis,” Buchman says.

Not every critically ill patient needs the intensive level of support the palliative care team provides. Ideally, many of the same techniques for pain management and emotional support that the palliative care teams use also can be administered by the medical staff treating the underlying cause of the patient’s disease.

“We have millions of people who have diabetes, but not all of them need to have their disease managed by an endocrinologist,” says Quest. “Primary care physicians can follow diabetes patients, and surgeons and other specialists can provide palliative care to diabetics. We are there to help with some of the hardest cases.”

The difference between palliative and hospice care

Still, palliative care often has to be defined by what it is not. While many patients getting pain management and emotional support
are in advanced stages of their disease, they are not in hospice care. This difference is important.

The vast majority of hospice patients have stopped treatment for their underlying disease. In most cases doctors have certified that they are within six months of death. The care they get focuses entirely on making them comfortable during the last days of life and is often provided at home.

In contrast, palliative care patients with advanced stages of cancer often continue to receive chemotherapy, radiation, and even experimental treatments on an outpatient basis. To be sure, the long-term prognosis of many of these patients is bleak. But the aggressiveness with which they and their physicians fight their underlying disease is not subjugated to the palliative care they receive. The two forms of treatment are not mutually exclusive.

Moreover, by addressing the pain and emotional side effects during aggressive treatment, palliative care could actually prolong the lives of patients with advanced forms of cancer, according to increasing evidence.

The potential for extending life

In fact, a recent study of more than 150 lung cancer patients published in the New England Journal of Medicine (August 2010) stunned many in the medical community.

Dan and Danya Hebermann

Dan and Danya Hebermann

The three-year, randomized study of patients at Massachusetts General Hospital with fast-growing lung cancers showed that those who received palliative care and cancer treatment not only were more well adjusted, able to get around better, and in less pain in their final stage of life, but also that they tended to live longer—about three months, on average—than those who received cancer treatment only.

If palliative care is started early as part of an overall treatment plan, patients tend to have less depression and are happier, according to measurements for scale of pain, nausea, mobility, worry, and other problems.

Dan Herbermann, a Loganville, Ga., landscaper and the father of two sons, knows about that.

Last December he was diagnosed with stage IV head and neck cancer when an MRI showed a tumor on the trigeminal nerve, which spans the side of the face and jaw and connects to the brain stem. Any disruption of the neuropathways of the trigeminal nerve can be excruciatingly painful, and Herbermann has had his share of pain. He thought he could endure it until the massive radiation treatment he was prescribed—33 visits over seven weeks—dried out the mucous glands of his mouth. The cancer pain and side effects of the treatment convinced his psychiatrist to ask for help from palliative care.

At first, Herbermann was worried about becoming dependent on pain-killing drugs, but in conversations with Jacob he concluded he needed some form of pain management. On his first checkup after the treatment had stopped, doctors determined that the tumor had not progressed. But he knows he may need more radiation.

His wife, Danya, is certain that treating the pain made a difference in her husband’s attitude and ability to keep fighting the cancer. “He’s in a very hard battle,” she says. “He has good days and bad. But it would be so much harder if he didn’t have the help he is getting from his psychiatrist, Dr. Jacob, and his oncologist.”

Many oncologists, especially younger ones, recognize the benefits of palliative care that come in conjunction with routine treatment for their patients.

Ruth O’Regan, medical director of the Emory Breast Center at Emory’s Winship Cancer Institute and a leading breast cancer researcher, was not surprised that lung cancer patients who had received palliative care did better than those who got cancer treatment alone.

More and more of her patients want to discuss quality-of-life issues when being treated for advanced stages of the disease, she says. Oncologists are attuned to those needs, especially in how to broach the subject with patients in their 30s versus older patients in their 80s. The goals and expectations for patients can be distinctly different, O’Regan says.  And when oncologists find themselves caught between the patient and their families about how aggressively to treat the disease, they want the palliative care team’s help.

“They are a wonderful resource for us, as well as the patient,” she says.

Transitioning to end-of-life care

Still, modern medicine has its limits. Despite advancements, cancer all too often outlasts chemotherapy and thwarts radiation. Weakening of the heart and lungs can trigger a cascade of events that results in multiple organ failure. The relentlessness of Alzheimer’s eventually takes out the strongest of patients.

Moving from palliative care to hospice care is a natural progression. Patients and their families who have been through the first often have a better understanding of what comes next. Hospitals also are learning. EUH and EUH Midtown have opened inpatient hospice units as part of the palliative care initiative.

For several years, there has been a hospice care unit in Budd Terrace skilled nursing facility at Emory’s Wesley Woods Center, which specializes in geriatric care. Chaplain Woody Spackman and his colleagues counsel patients and their families daily on end-of-life issues in the acute long-term care unit at Wesley Woods and other Emory hospitals.

When he worked on the oncology floors at EUH 25 years ago, palliative care and hospice care were rarely discussed. “Some topics just never came up,” he says. “It was as if by raising them, we were acknowledging that we were giving up.”

These days, however, “families are more in touch with quality-of-life issues. Some of them have talked at length about it, and they have reached some decisions,” Spackman says. Still, many families need help. And Emory’s corps of chaplains is happy to have the services of palliative care specialists to make available to patients and families.

The VA leads the way

Perhaps the most dramatic example of how things have changed is at the Atlanta VA Medical Center, which has infused $3 million in staffing to expand palliative care and hospice services for patients.

Additionally, the hospital has recently opened a 12-bed unit that will serve both services. Patients will be treated in private rooms large enough to have a comfortable living area (including chairs and a sleeper sofa) for their families. Nearby, family members can make use of a room to teleconference with family and loved ones who can’t be there in person.

Emory’s chief proponent of palliative care services, Tammie Quest, runs the VA unit. She supervises a staff that cares for 1,000 palliative care patients (about half of whom are treated in outpatient clinics). It’s not surprising to her that the VA was among the first major medical systems to recognize the value of palliative care.

“In recent years, quality of care has been paramount for the VA,” Quest says. “The care that we can provide is directly related to how patients measure their quality of care. You can’t get more basic than helping them feel better and allowing them to decide what’s best for them.”-EH


Having the conversation

Chaplain Woody Spackman

Woody Spackman

The emergency department (ED) or ICU may be the worst place to hold “the conversation.” But without advanced planning, it sometimes becomes the only place.

Estimates are that one in 500 patients who come to the ED, as many as 200,000 a year, do not live to be discharged from its constantly bleeping monitors and bright lights. Another 500,000 patients die within days after being “tubed and moved”—to use the vernacular of the ED staff—from the emergency area to intensive care. Similarly, patients with end-stage chronic conditions like cancer and heart disease can wind up being admitted directly to the ICU in such a debilitated state that they can’t speak for themselves.

Spouses, loved ones, and families who have never talked about what to do under such dire circumstances are often uncertain about the patient’s wishes. They need help sorting through decisions about how aggressive they want doctors to be and when—or under what circumstances—treatment should be stopped.

“Talking about what we want to be treated like at the end of life can be a hard conversation, but it doesn’t have to be,” says Woody Spackman, executive director of Emory’s Center for Pastoral Services. “It also can be a unifying moment for families, a chance to heal old wounds, and help each other understand what values we hold most dear. It makes many of the decisions that come later easier.”

Starting the discussion  Legal and ethical scholars point to a number of readily available documents (many of which can be downloaded from online websites) that individuals and families can use to specify their wishes. They range from advance directives to living wills to medical powers of attorney, also known as durable powers of attorney. While these documents differ slightly in form, many provide evidence of what the person wants in the event that he or she is unable to make decisions.

Still, filling out the document and stashing it away in a desk drawer or a safe deposit box doesn’t go far enough, say experts, especially in families where there may be differences of opinion and strained personal relations over who is chosen to make decisions for the patient. It takes “the conversation.”

Palliative and hospice care experts recommend holding a family meeting (at a holiday gathering, birthday, or wedding anniversary) to discuss end-of-life wishes. Often, the documents themselves prompt such discussions.

Families may know, for instance, that their loved one doesn’t want to be intubated so that a machine is breathing for him, but they may be uncertain how he feels about the use of a feeding tube for nutrition even though there is no hope for recovery. That’s what makes the conversation so difficult. But rather than avoid it, experts say, families should confront it explicitly—sharing their expectations as well as their fears about death and dying. -EH

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