A panel of experts from the growing field of death and dying addressed some 70 people Wednesday night at Herrick Hospital in an effort to stimulate public dialogue about a part of life most of us put off as long as possible.
Patricia Murphy, of the East Bay Coalition on End of Life Care, said that her group organized the meeting as an “entreaty to people in our communities to start a conversation about the ‘last taboo’ in our society.”
It was clear from the high turnout that many people in the Bay Area are ready to start talking.
Emotions ran high throughout the meeting, as panelists and audience members shared their personal experiences with the loss of loved ones.
Boyer C. August, who has AIDS, said that it is often difficult to walk the line between maintaining a positive attitude about his illness and being realistic about his chances of survival.
“It all depends on your point of view,” he said. “I look at it this way: as soon as you’re born, you’re dying. For some of us it takes 75 years to do it, and then you’re dead. The trick is to enjoy life before you get there.”
The discussion was led by Wendy Hanamura, producer of KQED’s “Bay Window” series and was inspired by Bill Moyer’s four-part series on PBS this month, called “On Our Own Terms: Moyers on Dying.” Hanamura said the Moyers’ special reflected a movement to remove dying from cold, sterile hospitals and move it into a more nurturing environment.
The East Bay group was formed by health care professionals and community members who believe it is time to follow the path carved out by the natural childbirth movement and to accept death as an inevitable part of the life cycle.
As one audience member remarked, the evening provided a rare opportunity to see a lawyer, a doctor, a patient, a parent, a chaplain and a social worker all seated at the same table and serving a common purpose – to share their collective expertise on living with a potentially terminal disease.
August told the audience that contact with supportive friends and family is critical to anyone with a terminal illness. “If you keep communicating with others, you can survive,” he said, with his mother Joan Franciosa August seated beside him. “If you don’t, it breaks your heart.”
Panelists and audience members agreed that quality medical attention is another key component in palliative care – and a rare commodity in these days of HMOs and malpractice suits.
“We work in a culture in which the death of a patient is seen as a personal failure for a doctor,” said Dr. Jeffrey Burack, a physician at the East Bay AIDS Center. Burack said the health care system provides intensive medical interventions, but rarely the more caring and holistic services terminally ill patients need. Because of this, he said, there is often a profound mistrust of doctors, especially among minority communities and the disabled who sometimes feel the medical establishment “is only too happy to get them out of the way.”
Lawyer Priscilla Camp warned that these fears are often an obstacle when taking control over the important legal aspects of dying, such as writing a will, or authorizing an “agent” to make health care decisions for an incapacitated patient. She said that it is best to take care of this often unpleasant paperwork “early on, before you are in discomfort and pain.”
The central theme of the evening was the spiritual side of the dying experience. Bereavement counselor Howard Lunche and Rev. Betty Clark were on hand to discuss the importance of helping patients and their caregivers deal with “pain overload.”
“We are so afraid of people who are dying that we forget to ask them how they are. I like to tell them ‘your spirit looks good’ – that really picks people up,” Clark said. She said that although she never forces her religious faith on anyone, she sees her job as meeting with people on their own terms, and helping them “travel whatever spiritual journey they’re on.”
Lunche said he sees the most suffering and despair about death when people feel “dehumanized.” He views his role as an advocate for people who are dealing with a medical system “contrary to the idea of forming a relationship between the professional and the patient.”
At the end of the panel discussion, one woman in the audience asked panelists what resources are available in the community for patients and caregivers who are without a supportive family network.
Lunche echoed many in the room when he said that hospice care organizations, which organize a team of people to help patients and their families in their homes, provide many resources for people with a life threatening illness.
Even those with low incomes can benefit from some hospice programs, said Bonnie Maeda, a nurse with the Mid-Peninsula Pathways organization. “We won’t turn anyone away. People just need to reach out for help and see what’s available.”
The East Bay Coalition is currently forming smaller support groups throughout the area to encourage further discussion. For more information, contact Patricia Murphy at 450-8512.