For those sharp enough to know all the loopholes, taxes may not, in fact, be inevitable. Death, however, still is. Even so, it remains a subject most people just don’t want to talk about. Especially not their own. This throbbing conversational void has significant consequences—few of them good—according to a growing legion of Santa Barbara health-care professionals who deal with end-of-life issues. Individuals rendered incompetent or incommunicado by their medical conditions are incapable of making choices for themselves. In their stead, family members are forced to divine what their wishes were. When it comes to pulling the plug or authorizing life-extending treatment in such emotionally charged circumstances, disagreements are not uncommon. In extreme cases, such disputes become a matter for the courts and the media, as with it did a few years ago with the ugly tug of war over Terry Schiavo—in a prolonged vegetative state—between her parents and her husband.
Akivah Northern and Susan Plummer, who run Santa Barbara’s Alliance of Living and Dying Well, have been leading community workshops in churches, retirement homes, and community centers for two years, trying to give this conversation a much needed collective jump start. The vehicle around which these workshops are centered is a legally binding advanced directive document known as “The Five Wishes.” In it, people are asked to designate whom they want to represent them when they can no longer represent themselves and to indicate what efforts should—or should not—be taken to keep them alive in the face of catastrophic medical circumstances. Some, not willing to rule out the possibility of eventual recovery no matter how improbable, insist any and all steps taken to keep them alive. Others make it clear they want no extraordinary measures taken and that they be allowed to die a dignified death. “The point is it’s their decision to make,” said Northern, “and this helps them to make it.”
Larry Badash was the embodiment of robust physical vitality when he was diagnosed with pancreatic cancer last August. At age 76, he still climbed mountains, hiked everywhere, and traveled extensively. The diagnosis came as a sudden shock. His death just 20 days later was even more of a jolt. Had Badash not attended a Five Wishes workshop with his longtime partner, Nancy Hofbauer, who knows how his death would have gone. Because Badash and Hofbauer weren’t legally married, it’s unclear what standing she would have had to act as his agent with nurses and doctors at Cottage Hospital. But Badash explicitly named Hofbauer in his Five Wishes, so there was no question. Likewise, he made it clear he wanted no extraordinary measures taken to keep him alive. In addition, Hofbauer reported, Badash specified he wanted no music piped into his hospital room, no visitors outside his immediate family, no prayers, and that his body be cremated and that his ashes be deposited in the high Sierras.
Research indicates that advanced directives like Five Wishes can substantially soften the trauma inflicted by the death of a loved one. Where such plans have been made in advance and communicated to family members and health-care professionals, the incidence of depression and post-traumatic stress has been significantly reduced.
Dr. Michael Bordofsky, who specializes in palliative care and hospice situations, doesn’t need such studies to convince him. “All the time, I see families who are prepared and families that couldn’t bring themselves to deal with it,” he said. “The ones who don’t talk about it really, really struggle.” Bordofsky noted that Five Wishes is one of many advanced directives, but because of its clarity and specificity, said it’s the best.
By discussing death plans in advance, Northern said patients and families can be spared unnecessary suffering. Beyond that, she said the act of discussing so emotionally loaded a subject can be liberating, create a sense of community, and foster a new intimacy. In discussing the matter with her own husband—well-known community organizer Babatunde Folayemi—Northern said she learned things she never knew. Margaret Weiss, education coordinator for Sansum Clinic, said she and her husband made a social event out of the process by inviting two couples over for dinner. “That way, it wasn’t just a legal document,” she said. “We brought it into the realm of friends and family.”
Michael Seligman, an 89-year-old World War II vet well-known in liberal activist circles, said vast sums of money are spent prolonging the last 10 to 20 days of life on what her termed “unnecessary and futile life-prolonging procedures.” Everyone, he said suffers. “A lot of people don’t like to talk about dying, so they put it off,” he said. “As a result, they wind up losing the capacity to make a decision on how it is they will spend their last days.”
The Alliance will host a tribute to Five Wishes trainers and volunteers on Wednesday, May 25, 4:30-7 p.m. at the Cabrillo Arts Pavilion (1118 E. Cabrillo Blvd., 897-1983).