by Carol Harrison
October 21, 2012
Amy Cirincione hails from a large Italian family, the kind that flocks to the hospital when one of their own is an emergency admission.
“The way we deal with crisis is yelling,” Cirincione said on the last Saturday in August. “I filled out an advance directive to help my husband deal with my family.”
Laughter, smiles and nods filled the Hospice of Humboldt annex where Cirincione is the director of social services. For the past year, she’s used humor, experience and knowledge to help almost 75 people plan for the end of life by filling out an advance directive.
”Anyone over 18 should have one,” she said while setting up for the free, two-hour workshop in August. “You can be hit by a bus or have routine surgery with complications. You need to make sure your wishes are known.”
Advance directives help guide family and physicians in the event the author becomes incapable of voicing or making healthcare decisions.
”Suffering, and fear of suffering, is the reason many people come in to do an advance directive,” Cirincione said. “They don’t want to be in pain. They’re afraid of lying in an endless coma, but they don’t want to miss out on lifesaving treatment. They want a way to start the conversation about everything in between.”
The quarterly workshop moves step-by-step through California’s four-part Advance Health Care Directive, starting with the naming of a healthcare agent and alternates to make decisions for you.
Also covered is how to express wishes regarding the provision, withholding or withdrawal of treatment that keeps people alive, the provision of pain relief, and organ donation.
”There’s a lot of interest, but it can be hard for people to get support for end-of-life planning like this,” Cirincione said.
Her goal is to have attendees leave with at least a draft of their wishes.
”I promise (the workshop) will be more fun that you think it will be,” Cirincione said.
Jessie Wheeler and Kay Escarda thought so. They were among the 11 attendees this go-round.
”It was absolutely excellent and so user-friendly,” Wheeler said. “I was most impressed with the way (Amy) allayed the fears people have about filling advance directives out.”
”It was small, intimate and no one felt intimidated,” Escarda said. “People shared stories and experiences and the teacher was able to use that as a launching pad to cover some of the things people were uncomfortable about.”
One woman spoke of her worries that the advance directive would lead to her asthma not being treated. Another shared the story of a friend who went in for a hernia operation, developed a staph infection, and was conscious but “couldn’t make the body do anything” for a month of fruitless interventions that only delayed death.
”I couldn’t imagine the suffering,” she said.
Advance directives trace their roots to the 1990 Patient Self-Determination Act. The law requires all health-care institutions receiving Medicare and Medicaid funds to inform patients about their right to participate in health-care decisions.
Twenty years later, studies show the prevalence of completed advance directives among adults in the general population to be 5 to 20 percent, but most of those studies took place before the 2005 death of Terry Schiavo, a 41-year-old stroke victim.
Seven years of litigation between her husband and parents ended when the courts allowed him to have her feeding tube removed.
The controversy became a national debate about end-of-life care and the right to die, in large part because Schiavo had no advance directive. The U.S. Supreme Court ruled in 1997 in Washington v. Glucksberg and Vacco v. Quill that competent adults had a constitutional right to refuse unwanted medical treatment and that advance directives were a means of safeguarding that right should those adults become incapable of self-determination.
As medical technology has evolved, so have the means to keep people alive. Intubations, advanced airway interventions, mechanical ventilation, cardiopulmonary resuscitation, feeding tubes and other long-term methods of artificial nutrition can keep patients alive, but it is up to families and individuals to weigh the quality of that life against the treatment options.
CPR, for example, is routinely shown on television as a hospital treatment that involves chest compressions and electricity through an external defibrillator. What isn’t shown or understood are the broken ribs that usually accompany the compression; that it is more successful in some situations than others; that only one in six patients who undergo CPR in a hospital survive to discharge; and that only 7 percent of patients survive CPR and have good brain function at discharge.
”Talk to your physician about whether you are a good candidate for CPR,” said Cirincione. She also emphasized the need to talk to family before a health emergency happens.
The law designates who the next-of-kin are — spouse, children and then parents — but it does not single out which parent or child if a spouse is unavailable or incapacitated, she said. Nor does it care if the next-of-kin shares the patient’s values.
”If you do nothing else but select a health-care agent, you are light years ahead,” she said. “It’s impossible to think about every scenario and what it entails, but you can identify someone you trust who shares your values and will act with your wishes in mind.
”And you can think about designating a second and third backup in case your first choice becomes incapacitated, either because they were in the accident with you or become a puddle of tears.”
Researchers at Oregon Health Sciences University said levels of stress for family members who must decide whether or not life support should be withdrawn from relatives too incapacitated to decide for themselves are twice as high as those found in other crisis events, such as coping with ferry or construction disasters or losing a home to fire.
It was least severe when advance directives were available and most severe when they were absent.
”The stress from guilt and second-guessing are dramatically lower for the health care agent who knows your wishes,” Cirincione said.
As for signing the directive and having it properly witnessed or notarized, Cirincione is realistic.
”A lot of people take it home and will set it on top of the to-do pile,” she said. “Many will never formally do it, but some will articulate what they want and that’s a start.”
Wheeler has already completed her forms; Escarda expects to have hers done by her next doctor’s appointment later this month. Both have had conversations with family. In addition to making sure their wishes are known, they expect the conversations and paperwork will reduce anxiety, prevent turmoil and promote unity among the families and friends responding to a health-care crisis.
”I don’t want my kids to go through what I went through,” said Wheeler. She took care of two parents and a husband. She still recalls her 85-year-old mother begging her to make sure her father didn’t force chemotherapy on her, and a sister-in-law who thought a “do-not-resuscitate” order meant doctors would walk out of the room and quit caring for the patient.
”Those are the fears people have,” Wheeler said. “And there are many more that I wouldn’t have thought of myself. Those fears keep people from signing donor cards and advance directives. People think they won’t get taken care of.”