Ann Scruggs, 79, beat cancer—twice. Then her nemesis returned in September, appearing first in the pancreas and quickly spreading. Her penetrating blue eyes and strong voice reflect the determination that allowed her to defeat cancer before. This time, she is equally determined to let the disease take its course.
“I thought I was done with [cancer],” she says, sitting in a chair next to her hospital bed and tethered to oxygen. “At first, I fought it. Then I decided, ‘This is not living.’ I knew where we were heading.
“I fought for more life at first because I wanted my grandkids to see that you don’t give up,” says Scruggs, her voice cracking with emotion. “But I very much believe in the Lord. I was able to find peace with this.”
Scruggs decided to forego chemotherapy and instead receive palliative care at Baylor Regional Medical Center of Plano.
The goal of palliative care is to relieve a patient’s disease symptoms, or to minimize a treatment’s side effects. Non-hospice palliative care is not dependent on a patient’s prognosis and can be in conjunction with traditional curative medical care. People in hospice, who no longer receive treatment to cure their illness, always receive palliative care during their final months of life.
Sometimes called “comfort care,” palliative care is an interdisciplinary approach designed to minimize pain and enhance quality of life for patients and their families. Caregivers provide spiritual and psychological—as well as medical—guidance. Palliative clinicians often help families and patients make difficult decisions about whether to use highly aggressive therapies and sort through treatment options. Those decisions are becoming more complex as medical technology continues to increase the number of choices.
Research shows that palliative-care patients report improvement in pain or nausea, better communication with their doctors and families, richer emotional support, and care that is more in line with their wishes. A study of family survivors found they believe palliative care is superior to standard care in areas such as preserving patient dignity, access to supportive community services, and reduction of post-traumatic stress disorder symptoms.
The healthcare system benefits, too. Healthcare Affairs reports that palliative care reduces average cost of care and length-of-hospital-stay by about a third. And, according to a study noted by the Archives of Internal Medicine, a 300-bed community hospital with a palliative program saves about $1.3 million a year in pharmacy, lab, and intensive care costs. An average academic medical center can save as much as $2.5 million annually.
Baylor’s Plano program is expanding. Martha Philastre, Baylor Health Care System’s administrative director of palliative care, says Baylor Plano treats about 20 palliative patients a month. That is about half as many patients as the Baylor University Medical Center program, despite the fact that Baylor Plano is one-quarter the size.
Nurse Stacy Zancana began providing palliative care in 2006 at the hospital, even though she was a full-time oncology nurse. Palliative care officially became part of her job in 2009, and her sole focus in 2010.
The hospital plans to hire a full-time palliative-care physician in January and establish a palliative outpatient clinic to allow patients to leave the hospital and continue care. Philastre says the clinic would help prevent avoidable hospital readmissions and strengthen chronic-disease management.
Nearly everyone talks about improving quality of life. Few think about striving for quality of death. In a 2009 survey of people over 50 years old, nearly half says they had not thought about end-of-life care and 90 percent says they had not documented their wishes.
More than 80 percent of U.S. adults die from a protracted illness such as cancer, heart failure, or Alzheimer’s disease. A similar percentage does not want to be hospitalized when they are dying, according to the Dartmouth Atlas Project.
Palliative care typically begins with a discussion of what a terminal patient wants out of his or her remaining life. “We ask [patients] whether they want aggressive care, less aggressive care, or something in between,” Zacana says. “About 70 percent want less aggressive care. They don’t realize they have that option.”
Besides medical care, palliative care can also include legal, religious, insurance, and advance-directive issues. Once the patients and their families express their wishes, palliative-team members can guide them toward reaching their goals.
Palliative care is about managing symptoms—such as pain, nausea, insomnia, loss of appetite—that accompany disease or treatment.
Annuls of Internal Medicine reports that one out of four patients experience significant and needless pain during their last two years of life. In the last six months, the number rises to nearly 50 percent. The biggest contributor is arthritis.
Palliative care is a relatively young medical discipline. The American Board of Medical Specialties officially recognized it in 2006. In a recent survey, less than one-quarter said they were familiar with the term.
Many people, including some physicians, confuse palliative and hospice care. Non-hospice palliative care addresses symptoms regardless of prognosis. Hospice is a subset of palliative care for those who are believed to be nearing death. Some fear health-care providers will not try as hard to cure them if they ask for palliative care. Others believe hospice is a “place” rather than a form of care that can be provided in many locations.
Hospice care depends on a physician’s estimate that a patient will live no longer than six more months. However, care will continue after that time as long as the physician and hospice caregivers certify that the patient’s condition is terminal.
Both palliative and hospice involve care by a multidisciplinary team that may include physicians, nurses, social workers, chaplains and others. The diversity of care underscores the fact that end-of-life treatment extends beyond the physical to include psychological, spiritual, and emotional needs.
According to the Worldwide Palliative Care Alliance, more than 100 million people annually could benefit from palliative or hospice care. However, less than 8 percent have access to it.
However, end-of-life care is growing rapidly in the United States. The percentage of heart-failure patients using it more than doubled from 2000 to 2007, to about 40 percent. The number of palliative-care programs in U.S. hospitals doubled during the same period, to nearly 1,500—including 80 percent of hospitals with 300 or more beds. Despite greater availability, use of palliative care by physicians is low.
They tend to view it as the opposite of curative care, rather than a companion therapy.
Part of ‘Peaceful Dying’
Palliative and hospice care inevitably will become better-accepted clinical tools. Medicare increasingly will buckle under the economic strain of a rapidly growing elderly population. American medicine traditionally has delivered aggressive, expensive care in the last year of life—even if it is futile and unwanted.
Palliative care offers multiple benefits. Pain can slow the healing process. It extends hospital stays, prolongs needless suffering, and erodes a patient’s capacity to adhere to prescribed treatment.
A 2008 Journal of Palliative Medicine study measured the impact of palliative care on patient satisfaction, clinical outcomes and cost of care for six months after being released from the hospital. Patient satisfaction was higher, more advance directives were completed, fewer ICU admissions were necessary and overall medical costs were lower compared to patients with life-limiting illnesses not in palliative care. Patient satisfaction stems primarily from palliative care’s patient-centered approach, which incorporates personal values and preferences.
This is in contrast to the usual intensive care many patients receive regardless of their preferences. More than half of Medicare spending on beneficiaries in their last two years is for hospital costs. About 25 percent of total Medicare costs is spent for patients in the last year of life. Most of those expenses are for hospitalizations, including readmissions and ICU stays. One out of five cancer patients are still receiving chemotherapy in the last two weeks of life.
Palliative care is not necessarily intended to be less expensive care, but that often is the result. A hospitalized palliative-care patient costs $279 to $374 less a day. There are significant reductions in pharmacy, laboratory, and ICU costs. The average annual savings of a palliative-care program is $1.3 million for a 300-bed community hospital and $2.5 million for an average academic medical center.
Baylor palliative care executives say the average palliative case saves the system more than $3,000 in direct care costs.
Patient satisfaction with hospital care is inversely related to intensity of care. It falls in direct proportion to higher spending, greater use of resources and intrusive care.
Zancana says, “Palliative care is symptom management, but it is also about listening to the patient talk about their grandkids or their wishes. It’s an important part of treatment. They want to recognize the value of their life. It’s part of peaceful dying.”
Dr. Matthew Curry, a critical-care physician who assists Zancana, agrees. “Sometimes [palliative care] is a pain issue or treating nausea. But sometimes it’s not a medical thing. It becomes a spiritual conversation about what’s on the other side [of death].”
Linda DiFinio, Ann Scruggs’ daughter, keeps a constant bedside vigil. She says her mother never had any form of painkiller before her decision to take palliative care.
“Everything is new. God sent us an angel [in Zancana]. Stacy is very kind, patient and informative,” DiFinio says. “She is good about explaining our options. She understands how we’re feeling. She reassures us they will be there every minute, emotionally and physically.”