Finishing Up the Good Race/ Opening Conversation about Death
By Bethany Joy Hargis

David Martin's life partner checked into St. Luke's Roosevelt Hospital in New York and died five weeks later. The cause of death was a mysterious illness that no one would talk about. The year was 1982.

"It was AIDS. In those early years not only did it not have a name, but the nursing staff would not even enter his room," said Martin, '62. "His meal trays would be set on the floor outside his room. He was totally isolated, so I took a leave from work and became a caregiver out of necessity."

This began Martin's 24-year journey into hospice care and helping others manage the end of their lives. In addition to being a hospice volunteer, Martin serves on the Bioethics Board for the Veterans Affairs Administration in Los Angeles. Medicine and hospital care have come a long way since 1982, but Martin believes American society still ignores issues dealing with death.

"Even the medical profession as a whole is not comfortable with death and dying," Martin said. "I feel that they see death as a failure on their part, when in fact, dying is just one of the natural processes of life."

Families should prepare by having conversations regarding the care and measures wanted for end of life. If these conversations do not happen, family members are faced with a tough position, Martin said.

"If a patient has been resuscitated, placed on a ventilator, and has no possibility of restoration to any level of meaningful quality of life, and if the family has durable power of attorney for medical care, they possibly will be asked to make the decision to 'unplug' or not," Martin said.

When a patient is diagnosed with a terminal illness, making conversation happen is the key, said David C. Riddle, the executive director of the Tri-Cities Chaplaincy and Hospice.

"No one likes to think about the issue of having a family member pass away, but it happens and the more prepared we are in advance, the better the quality of care and quality of life the person who is dying will have," Riddle said.

Riddle says experts believe patients need to hear and say four things with their families: please forgive me, I forgive you, thank you, and I love you. When a loved one is in the final stage of dying, these four statements are important for the patient and for the family members to say.

"If we do not forgive when asked, or cannot say I love you back to the person who is dying, then that will be a part of our history from that point forward," Riddle said.

When hospice is decided as the best option for a patient, hospice professionals who are familiar with the specifics of the hospice program can help guide discussions between family members and can answer whatever questions arise, Riddle said.

The hospice program began in the 1960s as a volunteer movement advocating a gentle death. Hospice was an alternative to the medical death many people feared. As of 2005, there are 3,300 hospices in the United States, caring for about 950,000 people a year. Roughly two million anticipated deaths occur every year in the United States. About one-third of these two million Americans die while in hospice care.

The Tri-Cities Chaplaincy and Hospice staff works with patients and families to make them as pain- and symptom-free as possible. They attempt to work out psycho-social issues and to address the patient's spiritual needs. Although hospice can help provide support and resources, the importance of family and reconciliation are two key elements in a peaceful death.

"The interesting thing about my dad's passing was that he was not in a hospice program," Riddle said. "But he did die at home, without being in pain, spiritually sound, surrounded by those he loved, and with an understanding that he had finished up well."

Three-time cancer survivor Christine Clark, '7o, has come to terms with her own mortality. Diagnosed with colon cancer just before graduate school, Clark was told she only had a 50/50 chance of survival. Eighteen years later, Clark battled uterine cancer, and last year she had surgery for breast cancer.

"I feel like there have been three very take-your-breath-away experiences," Clark said.

These past experiences are part of what propelled Clark into her work as an oncology social worker, involvement in a homecare agency and hospice-volunteer training. Currently, Clark is the director of the Spokane part-time program in the School of Social Work and Human Services at Eastern Washington University.

When working with terminally ill patients, Clark brings up questions and advice to help the patients work toward resolution. She asks whether there are unfinished relationships or important possessions that the patient wants to give away.

Clark worked with a man who attended an Irish festival parade every year. Due to his terminal illness, he couldn't go. Together, they wondered if someone could go in his place. Someone did.

"In a way, he left a legacy. He left some of himself behind," Clark said.

Many people who are facing a life-threatening illness have never talked about death, Clark said. They want to talk, but they don't know how. For some patients, Clark invites the family for a visit. She helps initiate conversations that need to happen. She asks questions about their feelings and the meaning of tears.

"Crying about losing something who 's important to you expresses love," Clark said.

Another of Clark's patients was a dying mother who would leave behind her husband and two daughters. Together she and Clark put together a videotape for her daughters to view in the future. On the video, the woman talked to her daughters about dating, other life issues and how proud she was of them both. She left the video with her husband to give to their daughters when the time came.

Clark also has been with her own family members as they have died, most particularly her father, who died after a long bout with Alzheimer's disease.

"We were holding him in our arms when he took his last breath," Clark said. Her knowledge of what to do as he died didn't make the pain less. She still grieved, but was able to find ways to make his last hours better.

For more information on end-of-life concerns, go to:
www.providence.org/long_term_care/hospiceportal.htm

www.thefourthings.org