December 29, 1999
Hospice care preserves a family memoryBy Louisa C. Brinsmade
Two years ago, cancer took the love of Annette Chardin's life. Her husband, Rick, was only 42 years old when doctors discovered a baseball-sized malignant tumor in his colon. He had been complaining of digestive problems for months and was taking medication for ulcers. Finally, a colonoscopy revealed the tumor, and despite emergency surgery to remove it, the cancer had already metastasized to his liver. The oncologist gave him nine months to live.
Rigorous chemotherapy treatments reduced the size of the tumors in Rick's liver and helped him survive the next two years. He was even able to continue working as a supervisor at the city water department. Eventually, however, the benefits of the treatments waned, and his body began to give in to the disease. At this point his doctor wanted to stop the chemotherapy, which was weakening his immune system, and approached Rick and Annette with the option of hospice care.
"It was a tough decision," Annette says. Like many people in the United States, she knew little about hospice care and perceived it to be a final service for people who had given up on life.
"When we heard the word 'hospice,' we automatically thought, 'That's for the end stages,' " she explains. "That's all we knew about it, so we were skeptical." The idea of hospice smacked of self-pity, and that's just what Rick wanted to avoid. "He used to say to me, 'I'm still here today. I don't want people crying or moping around me,'" Annette recalls.
Rick and Annette decided early on that they would do their best to enjoy their remaining time together with as little interference from medical procedures as possible. Annette recalls her husband's adamant directions to the doctors. "He told them, 'No tubes ... I don't want to be so sick that I can't enjoy my family. I want something that can help but does not make me weak,'" remembers Annette. "I can't believe how strong he was about it."
Hospice, with its focus on quality end-of-life care, was the family's best option. For the last six months of his life, as Rick grew weaker, he and Annette turned to Hospice Austin, a nonprofit organization in Austin, Texas. With their assistance, Rick was able to stay at home, where he was most comfortable, while a team of doctors, nurses, nurses' aides, volunteers, social workers, and spiritual counselors cared for him. Each member of the team visited the family several times a week in the beginning. Near the end, they came every day.
"Annette and Rick were deeply in love -- everyone could tell that," recalls Marjorie Mulanax, executive director of Hospice Austin. "They had a lot of support and a lot of love in their family, but they really took advantage of our programs, and I think it helped. They started doing all the things they'd put off and took lots of trips. It's hard for some people to talk about hospice and death, but Annette wants to share her perspective with people."
Before getting involved with Hospice Austin, "there were times when Rick would get sick, and although I kept my cool, I was climbing the walls," explains Annette. "There were so many details to arrange, and it was stressful because I wanted help right away. Sometimes his regular oncologist couldn't be there when we needed him, and if we had to go to the emergency room, people didn't know his case."
But hospice care gave Rick the special attention he and his family needed. "The hospice case workers came to the house and answered all our questions. It was a breath of fresh air. They provided all our information, and whenever we needed them, they were there. Our hospice nurse came twice a week ... and she stayed with us for a long time if we needed her there. She contacted us every day. She became a good friend."
The hospice philosophy
Hospices originated in England as charitable "way stations" for sick or weary travelers, and the concept slowly evolved. Modern hospice care was born out of the philosophy that the dying and those who love them should have emotional, spiritual, physical, and medical support. Hospice groups provide teams of health care professionals, and each member of the team participates in the patient's care. They also help coordinate treatment options, pain management, counseling, and personal care, and they help with household chores. The family members are able to take advantage of counseling services and bereavement programs both before and after the patient's death.
Larry Farrow, executive director of the Texas and New Mexico Hospice Organization (a trade group that represents all of the region's hospices) says the goals of hospice care are simple but comprehensive:
Make sure the patient is comfortable, using pain management and physical therapy.
Clear up problems such as chronic constipation or ulcers.
Keep the patient as alert as possible to ensure quality of life.
Encourage the patient to be as active as possible with family and friends.
Help with medical, psychological, social, and legal questions.
Help with coordinating bill payments and doing household chores.
Provide grief management programs for the family during the patient's illness.
Consult with the patient and family regarding a living will.
Provide bereavement programs and counseling to the family members for a year after the patient's death.
Hospice provided the Chardin family with a comforting end to a long struggle. "Rick died," Annette says quietly, "with me by his side, at home, with no pain, having visited with all his family, and knowing that he had settled his affairs with the world." Hospice care, she says, "lifted a thousand pound weight off my shoulders."
For the patient, the family, and the caregivers, the results of good end-of-life care are simple and rewarding. "We're given this incredible privilege to be with people who have stripped away all of the small details and are only concentrating on the most important things in life," Mulanax explains. "There are so many distractions in this world; helping families and their dying loved ones tells you what's really important. Families, not that massive house, or that thing society tells us will bring us happiness, is truly what it's all about. There are a lot of gifts that come with this work -- it can be a beautiful time and full of meaning."
Hospice care helped Rick have a dignified and peaceful death and gave Annette a new perspective on how to continue without him. "People think that hospice is the end, but they didn't make us feel like that," Annette remembers. "This time is not about death, they told us, it's about life."
More information about hospice
For more information about hospice care, and to find a hospice care facility in your area, go to the National Hospice Organization website.
To read about or get involved with a national campaign to educate the public and the medical community about hospice care, visit the Last Acts website.
Bill Moyers and his wife, Judith, are documenting the movement to improve end-of-life care for a television series called "On Our Own Terms." An outreach program to educate and involve communities in the end-of-life movement accompanies the series, which will air in the fall of 2000. To get involved or to find out more, visit their website
The Community-State Partnerships to Improve End-Of-Life Care program is coordinated by the Midwest Bioethics Center and funded by the Robert Wood Johnson Foundation. For information on corresponding programs in your state, visit the center's website .