Professor is an advocate for improving end-of-life care

Twenty years ago, if you had asked Betty Kramer how she wanted to leave this world, she would have told you something about passing away quickly and quietly in her sleep.

During the years, her perspective has changed.

“I’d want my friends and family to be around so I’d have the opportunity to help people prepare,” says Kramer, an associate professor of social work.

To Kramer, the question isn’t especially morbid or ghoulish. As an expert in the field of end-of-life issues, including grieving and palliative care, she’s spent much of her career thinking about how people can prepare for death.

More than 2.4 million Americans died in 2000, the most recent data available from the National Center for Health Statistics. Although medical technology is extending life expectancy, for many, the process of dying has also been extended. As a result, inadequate care for the dying in the United States is emerging as a major concern for those in the fields of medicine, nursing and social work, Kramer says.

Kramer’s work is based on the idea that the dying and their caregivers frequently suffer from pain that social workers or other practitioners could relieve — if they were better educated on how to help. She would also like to change perceptions that keep death issues in the background. Although deaths of friends and family members are among the milestone events in their lives, many Americans treat the issue as something of a taboo.

“We live in a society that doesn’t want to accept death,” Kramer says. “At a hospital, when a patient dies, we act as if someone has done something wrong. In reality, we all die, and we all grieve. The question is: How we can make it better?”

A native of northern Illinois, Kramer began pondering that question during her childhood, experiencing several instances of tragedy in her family. Her first memory of death occurred around the age of 2 when her baby sister died from sudden infant death syndrome.

“At that time, children were not talked to about death, and not knowing what had happened, I continued to search for her,” she says.

Kramer’s mother went through a near-death experience that changed her perspective on her life and relationships.

Her views about end-of-life care were profoundly shaped by the death of her 16-year-old brother when she was 19. In retrospect, medical attempts to help him beat leukemia in a Seattle hospital may have increased his suffering, she says.

In addition to the devastating effects of watching him suffer, Kramer says her family experienced financial hardships and the sense of not having enough support, such as health and social-service providers who could understand and respond to the emotional impact on family members, young and old.

“At the end, he was surrounded by family,” she says. “Although he had been experiencing intense pain, shortly before he died he spoke of seeing something beautiful before him. He smiled and died in a state of complete peace.

“Through these personal experiences, I became interested in how people cope with death, how they grieve and the actual care provided to them,” she says.

The events helped shape her view that death should be a time of dignity and peace, during which people can put aside old hurts and put their lives in order. For many people, it can push people’s relationships into places they were unable to reach before the end became an issue.

“You can grow in death,” she says. “When you’re short of time, people often start tending to business. They say things that are important. They become more authentic in their relationships.”

After starting her career as a geriatric social worker, Kramer earned her doctorate in social welfare at the University of Washington and came to UW–Madison in 1992. Her program of research centered on the positive and negative impacts of family caregiving. She recently co-edited a text entitled “Men as Caregivers: Theory Research and Service Implications.”

Kramer has also been involved in several major research projects, including a collaborative study with the Elder Care Partnership Program to examine innovations in end-of-life care for elders with advanced chronic disease, such as Alzheimer’s, and heart and lung disease. As a social work leader for the Project on Death in America, she is completing an analysis of end-of-life content in social work textbooks and is writing a text for social workers on interventions to help people deal with grief and loss.

Kramer recently participated in a three-day national summit to work with other experts to design a social work agenda to improve care for the dying, the bereaved and their families.

Back on campus, she teaches a class on grieving, explaining that everyone grieves in a way that’s personally appropriate to them. One main theme: Friends and family members typically feel compelled to fill silences or try to make a grieving person feel better when, in reality, they just need to be present and listen.

Kramer has found colleagues in nursing, medicine and pharmacy who are equally committed to improving end-of-life care in multiple settings. As UW–Madison continues to attract experts in related fields, she hopes to one day see the university establish an interdisciplinary end-of-life care institute that brings together researchers and practitioners.

At first glance, a career centered around death and dying might seem like a difficult burden, but Kramer says that people in the field learn to cope through their own intensely personal belief systems on why suffering exists. Teaching people to cope with grief doesn’t mean personally taking it on, and helping can be an affirming experience.

“Honestly, it makes me feel more alive,” she says.