By Denise MacLachlan
Herald staff
Bobbie Sueker's hospitalization for pneumonia was a turning point.
In February 2006, the 83-year-old widow, who had recovered from a heart attack the summer before, sat propped up in her hospital bed at Kaiser Permanente Hospital in Sacramento, frightened because she couldn't catch her breath. With her was her daughter and housemate, Pam Butts.
Butts, a nurse practitioner with decades of nursing experience, recalled that neither she nor her mother were prepared for her mother's decline. "She said to me, 'I don't want to die. I'm not ready,'" Butts recalled.
"I'm not ready for you to die, either," Butts told her mother. "You're going to be fine."
Two years later, on March 7, 2008, Sueker died from congestive heart failure. Her journey through declining health to the end of her life was at times painful and heartbreaking, her daughter said, but it was also a loving and sacred time, during which Sueker showed her children how a life draws peacefully to its close.
"Being able to let go of my mother and her being able to let go and accept the end of her life was very hard," Butts said. "It was a gradual process."
Both Sueker and her daughter were supported and cared for in that process by palliative (comfort) care and end-of-life hospice services. In an interview with The Herald, Butts discussed her mother's dying and her own experiences caring for her mother during those years.
Sueker recovered from the bout of pneumonia and returned home, but she and her daughter both knew that she'd need more hands-on care. The two women, members of St. Francis of Assisi Parish in Sacramento, had bought a home together in 1994, several years after Sueker's husband passed away.
Butts, a Mercy associate (a lay organization affiliated with the Sisters of Mercy) since 1992, had never married. She and her mother lived in their two-story home for more than a decade, until weakness from Sueker's June 2005 heart attack and her advancing arthritis made it difficult for her to climb the stairs. They decided to sell the house.
In hindsight, Butts said, the move into a single-story house in August 2005 was "the beginning of letting go." But during the nearly two years between moving into the new house and Sueker's entry into hospice care in June 2007, each crisis and every new piece of evidence of poor health seemed merely part of getting older, something to be expected—not part of a pattern that showed the end was coming.
During those two years, in addition to the hospitalization for pneumonia, Sueker was also hospitalized briefly for an irregular heartbeat, during which she was diagnosed with congestive heart failure. She became chronically weak and short of breath. Her medications had side effects that had to be managed. She also suffered increasing arthritis pain in her hands, back and neck.
"She never complained," Butts said. "She was very gracious."
But her declining health required more care from her daughter. Although Butts' two siblings were also involved in their mother's care, Butts was the logical choice as primary caregiver since she was a health care provider already in the home. For several months, Butts phoned her mother from work during the day to check on her, then returned home to care for her mother in the evenings.
Finally, at the urging of her brother, Clyde Butts, and her sister Charlis Hayes, Butts hired a caregiver to keep her mother comfortable during the day. It was January 2007, six months before Sueker would enter hospice care. She was now receiving palliative care.
The focus of palliative care is to make the patient comfortable, rather than cure the disease, according to Mercy Sister Claire Dalton, vice president of mission integration at Mercy General Hospital in Sacramento.
People with chronic conditions and terminal illnesses often receive palliative care, she told The Herald, when alleviation of pain is the best medicine can offer them. In cases of terminal illness, she said, the need for palliative care often begins prior to a patient's eligibility to enter hospice care.
Health insurance companies only permit patients to enter hospice six months to a year before death, Sister Dalton explained, depending on the insurance company. Medicare only allows six months. How much time people really have left, however, can be hard to predict.
"It's not a smooth progression to death," she said. "People have ups and downs." She notes that patients can leave a hospice program if their health improves—and it happens, she said. She added that people aren't dropped from hospice because they live beyond their prognosis.
Sueker entered the Mercy hospice program through Catholic Healthcare West in June 2007, after her primary care physician referred her to hospice with an estimated one to three months to live. She lived for nearly a year after that prognosis.
"Hospice itself is a form of palliative care," according to Dr. Frederick Meyers, executive associate dean of the UC Davis School of Medicine and a national leader in hospice and palliative care.
The World Health Organization defines palliative care as "relief of physical and emotional suffering, focused on a patient and his or her family, however they define family, delivered by an interdisciplinary team," he said.
Hospice care is palliative care implemented at the end of life, he said, observing that some of the emotional and spiritual suffering that hospice addresses are particular to the end of life—such as spiritual support, attention to financial issues such as wills and funeral arrangements, and attention to family issues.
The interdisciplinary hospice team is usually made up of a physician, a registered nurse, a chaplain, a home health aide, a volunteer, and a social worker, though others may join in as necessary, and the team members coordinate their care to address the needs of the patient and the patient's family.
For Sueker and her family, the hospice team's support made all the difference in the world, Butts said. When her mother was given such a short prognosis, Butts took a leave of absence from work to care for her mother, as hospice doesn't provide a full-time caregiver, though it provides some assistance from a home health aide to help with bathing and other tasks.
The volunteer comes in each week to help the caregivers or do the shopping. The hospice nurse coordinates the patient's care and is available 24 hours a day for information and advice. The chaplain and the social worker meet with the patient and his or her family, as needed, the social worker often helping with insurance paperwork.
The hospice team's goal is to improve the quality of the life left to the patient, however long it is, and to allow patients to die at home, surrounded by their families, if that is what they want.
Yet despite the availability of this program, funded by Medicare and most health insurance companies, the average stay in hospice is about 22 days, Sister Dalton said.
"Families are sometimes reluctant to enter hospice," she explained, "because they feel that it means they are giving up. But we are finding that when they do arrive at last, they say they wish they'd done it sooner."
Commenting on this reluctance, Meyer noted that if physicians presented hospice as something hopeful, rather than as a series of losses, the doctors could help patients see that hospice is "less about dying and more about living."
But often, the doctor's conversation with the family centers on what the patient can't have in hospice, including care that focuses on curing, such as chemotherapy, or extraordinary means of prolonging life, such as cardiopulmonary resuscitation. It is far more important for the doctor to help the patient to more realistic goals about the quality of his or her life, Meyer said, so that the patient focuses on what can be accomplished in the time left.
For Sueker and her family, signing a do-not-resuscitate order was impossible at first, Butts reported. But gradually, as they talked over the options—the probability that cardiopulmonary resuscitation would lead to Sueker's being on a ventilator, and the minimal chances of her lungs ever being strong enough to be weaned off of the machine—Sueker decided to sign the do-not-resuscitate order.
"The end of life can be an extremely sacred, spiritual journey when patients have relief from pain, are comfortable at home, can reconcile with their families, if that is what they need to do, or simply enjoy being with one another," Sister Dalton noted.
"People don't need to be dragged around to doctor's offices and clinics when they're so weak they can barely stand," she added. "They can be at home."
Sueker remained comfortable and at home on hospice, but she was rushed to the hospital by ambulance three times—once for a mild stroke, once because she fell and fractured her hip and once for a severe infection. Each time, she was treated and allowed to return home. After doctors placed a pin in her fractured hip, a physical therapist became part of her hospice team.
"We focused on mom's quality of life," Butts said. Butts knew that her time with her mother was limited, so she concentrated on appreciating her mother when they were together. Everyone came to visit, she added, surmising that most of the visitors were thinking the same thing.
"It wasn't all perfect and beautiful," she noted. "We had disagreements, frustrations, fatigue, inconvenience, all of that—just like any family. But preparing mom for her final journey was also a deeply spiritual and emotional time."
Sueker died peacefully at home on the morning of March 7, surrounded by her family. In her dying she taught her children how to peacefully, gently move on the next life, her daughter said.
"I don't think I'm frightened," Butts said. "I saw such acceptance and letting go from my mother. It was a peaceful, holy, blessed death."
Facts About Hospice
- Hospice is care provided to people confronting serious illness when curing the disease is no longer a realistic goal. It includes all services needed to manage a person's symptoms and complications. It provides emotional and spiritual support for the whole family.
- Hospice care usually takes place in the patient's home.
- Hospice care is provided by an interdisciplinary team that includes a physician, a nurse, a social worker, home heath aides, spiritual counselors and volunteers.
- Hospice is covered by Medicare and by most commercial insurance. It pays for a wide range of services, including medications, medical equipment, supplies, home assistance (for bathing and the like), therapists and respite care. Family members can receive bereavement services for a year after the patient's death.
Web resources
- EmbracingOurDying.com: A ministry of the California Catholic Conference, public policy arm of the state's Catholic bishops. The Web site provides information on Catholic teaching about end of life issues, as well as links to hospice programs throughout California.
- The California Hospice and Palliative Care Association lists hospice and palliative care programs in California, county by county, noting whether each is certified.
- The Web site of the California Hospice and Palliative Care Foundation includes questions to ask potential hospice programs to evaluate them.