Facing the End of Life
Through research, teaching and community outreach, University of Hawai'i programs offer advice, services and support during life’s final stage
The inevitable journey at the end of our lives, however brief or extended it may be, will deeply affect us and those close to us. Yet few of us actually talk at length about that journey and what it may mean. --Kokua Mau website
"People tend to beat around the bush when it comes to death," says Ana Zir, a UH public health instructor. "They don’t trust their innate capacity to be compassionate and loving. If they did, they would find that the dialogues ensue quite effortlessly." Zir coordinates two training programs for caregivers—Care of the Dying and Care of the Bereaved—through UH’s Center on Aging. "The curriculum takes into account how different cultures in Hawai'i view death and dying," says Kathryn Braun, the center’s director.
The university’s Cancer Research Center of Hawai'i also considers Hawai'i’s multicultural population. It administers 50-plus studies reflecting island lifestyles in addition to the nationwide clinical trials it participates in. One study examines how the traditional Hawaiian medicinal plant noni might provide symptom relief for cancer patients.
Sensitive Health Care
With the number of Hawai'i’s elderly increasing each year, end-of-life care training is a growing aspect of UH’s academic curriculum. The problem-based learning method used by the John A. Burns School of Medicine teaches science content in the context of patient case studies. "When these fictional patients die, students learn about pain management and depression at the end of life as well as the best way to deliver a fatal diagnosis or answer a patient who asks about physician-assisted suicide," explains Associate Professor Damon Sakai. "End-of-life issues are challenging. Not everyone achieves a peaceful closure."
"Death can be a positive experience if personnel are skilled and compassionate," says Colette Browne, chair of the School of Social Work’s gerontology concentration, which trains social workers to care for the elderly. When Browne’s father died, the oncology staff knew how to relieve his pain and help the family deal with grief. "They understood what it means to die."
Pain control became a front-burner issue nationally and in Hawai'i when a 1995 Robert Wood Johnson Foundation study reported that half of all dying patients in the U.S. suffer moderate to severe pain. Experts say that doctors frequently undertreat elderly patients’ pain. In response, the Center on Aging trains nursing home staff to monitor pain. "It should be recorded in patients’ charts along with temperature and blood pressure," says Braun. Addressing this problem through the medical school’s Geriatric Program, Assistant Professor Emese Somogyi-Zalud encourages nursing home professionals to focus on palliative care—relief from pain, depression and a feeling of helplessness—rather than simply maintaining life.
Accepting the Inevitable
"We have to acknowledge that these people are likely to die, and they deserve to have an optimal dying experience," Somogyi-Zalud says.
Understanding that experience is part of the life-span development course taught by Dana Davidson in the College of Tropical Agriculture and Human Resources’ Department of Family and Consumer Sciences. "People think death hits suddenly, but at the end of life there’s a terminal phase that’s not usually recognized, and it could last weeks, months or even years," she says. Her grandmother said goodbye the week before she died. "It’s like they’re getting ready," she says. There is such a thing as a good or preferred death, she continues. "The number one issue seems to be enjoying life." Many people prefer to keep to their daily schedule and do normal things with their families. Some take care of unfinished business. Others arrange their own funerals. "My grandmother didn’t want a sad, elaborate funeral. She set aside money for her family to go out for a Chinese dinner."
Financial Planning
"One of the biggest mistakes people make is not planning for this stage of life," maintains colleague Ron Wall, a family economics specialist. Living independently is not always possible. Wall’s in-laws planned to travel during their golden years, but his mother-in-law suffered a stroke and ended up in a wheelchair. Then she died leaving an elderly husband who was not used to caring for himself. Health, income, protecting and passing on assets, housing changes and sharing of family histories are all areas to be considered, notes Wall, who offers free financial counseling on topics such as restructuring a budget, estate planning and long-term care insurance.
"People think they’re not going to need long-term care," says UH sociologist Eldon Wegner, UH’s representative on a policy advisory board for the state’s Executive Office on Aging. "Nobody wants to accept the fact that they’re going to be frail and in need of help, but we have to accept that possibility," he says. Only 2 percent of Hawai'i’s population has long-term care insurance. Nursing home care is expensive. Using Medicaid requires people to spend all assets. "For most, this is a painful thing to do and not what they intended to happen with their estates." Intent on helping people age in place, Wegner is working on a program to develop affordable in-home health care services for residents of city and county low-income housing. "These issues aren’t on the public’s radar. Public education is needed to create more awareness and explore options for improving long-term care."
Legal Issues
Helping elders address legal issues is a priority for James Pietsch, director of UH’s Elder Law Program. His office helps prepare wills, durable powers of attorney, advance health care directives and so on for Hawai'i residents over age 60 who meet certain income and asset criteria. He also serves on the state’s Elder Abuse Committee and occasionally represents older clients who have been abused. Even trusted caregivers, he says, can get burned out, turn abusive and steal from the elderly. As a member of the governor’s Blue Ribbon Panel on Living and Dying with Dignity, he helped bring about the Uniform Health Care Decisions Act of 1999. The law requires health care providers to follow the directions of a patient who has made an advance health care directive (a more comprehensive successor to the living will).
Conclusion
Death is fraught with issues that affect us emotionally and can leave us with feelings of inadequacy, say the experts. Students in Linda Nishigaya’s popular UH West O'ahu class on aging in mass society explore those feelings. Many are social science majors planning a career in counseling. Others enroll because a family member is dying. One student had recently lost her husband. "She was frightened by her thoughts and wondered what was wrong with her," says Nishigaya. "Now she knows that this is what grief is and that she’s not the only one."
Mitsuo Aoki was one of the first scholars in Hawai'i to seriously discuss death. The emeritus professor of religion advocated embracing death in order to discover the deeper meaning of life. In his words: "Death will push us to a level of authenticity we rarely ever touch."
At the end, culture matters
There are few absolutes when it comes to culture, but regional, ethnic, religious and environmental cultures can influence how people approach end-of-life issues. UH experts offer some examples of general ethnic differences to be considered in assessing individual situations.
- African Americans may push to prolong life in hope of a miracle
- Chinese Americans may consider discussing death to be bad luck
- Filipino Americans may seek a non-medical reason for the illness
- Japanese Americans may hesitate to complain about pain
- Korean Americans may resist telling the patient when the condition is terminal
- Native Hawaiians may distrust physicians
- Samoan American families may assign a designated caregiver
- Vietnamese American elders may focus on preparing for death
Resources
- Center on Aging, 808 956-5001
Offers advice, referrals, phone counseling for caregivers, caregiver courses, Cultural Issues in End-of-Life Decision Making - Elder Law Program, 808 956-6544
Offers counseling, referrals, Elder Law Hawai'i Handbook, Kokua Packet (includes an advance health care directive form) - Family and Consumer Sciences, 808 956-7036 or 808 956-7046 (automated)
Financial Connections Offers financial counseling, free publications on a variety of financial topics, You and Your Money - State of Hawai'i Executive Office on Aging, 808 586-0100