Joe Jardine of Toledo watches what's happening to Terri Schiavo in Florida and says the sad saga gives him a second example to use when counseling patients on end-of-life care issues.
The first example happened in 1998 when he and his four siblings decided to stop further medical treatment of their father. Fortunately, his father had talked with family members about his wishes and, even more importantly, had written down his wishes in what are known as "advance care" directives.
"It helped knowing that he didn't want to be kept alive by artificial means," Mr. Jardine said. "But, even though you know rationally what to do, it's still a very hard decision to make."
He uses his own painful experience - and has now begun using the Terri Schiavo case - when he talks to patients and their family members as a social worker for Toledo-based Caring Visiting Nurse and Hospice.
"With what my family went through with my father, every single family I speak with about advanced care directives," he said. "I ask them to initiate a conversation, even if they don't fill out a form, because it's important to talk about it."
That lesson is one that a local group of professionals, including Mr. Jardine, hopes will renew attention to the often-overlooked issue of end-of-life care.
In 2002, the Advanced Care Planning Coalition of Greater Toledo was formed as part of a community-wide effort to improve end-of-life care. Made up of local hospital and hospice officials, the group has been working to educate the medical community and the public.
"We're hoping all this focus on Terri's case will bring us into a little greater light," said Laurie Phillipps, president of the coalition and a nurse at Hospice of Northwest Ohio. "We hope the lesson learned here is it's never too soon to start talking with your family about this. We realize it's a process and we don't expect people to do it in 24 hours, but they should begin the thoughtful process of asking, 'What if that were me?' "
The coalition has trained more than 90 facilitators at hospitals and hospices across the Toledo area. These individuals can meet, for free, with anyone who wants to discuss end-of-life care, help them obtain the necessary advance directive forms, and explain how those forms can be used. They've also established a hot line that the public can call for more information: 419-725-0523
Ms. Phillipps said coalition members urge people to:
●Talk with family members early about your wishes.
●Fill out advance directives, which are legal forms that spell out how you want medical decisions made if you become incapacitated. Fill out both a living will that spells out your desires in various circumstances and a health-care power of attorney that gives someone you trust the power to direct action on your behalf if you can't speak for yourself.
Dr. James Tita, a lung specialist and chief of staff at St. Vincent Mercy Medical Center, deals with issues such as whether to take patients off a respirator almost every day. A federal law passed in 1991 requires hospitals to ask patients if they're interested in filling out advance care directives, but sadly, most patients ignore it, Dr. Tita said.
"Nobody likes to think about it, your eventual demise, and it's one of those things you sort of want to do tomorrow," he said.
What patients do like to talk about in cases like this is what can be done to save their loved one. Life-saving technology has improved in recent years. However, it's often a struggle to explain to patients that "medical treatment has to be evaluated. Just because we can do something, doesn't mean we ought to," said the Rev. Joseph Cardone, regional director of pastoral care at Mercy Health Partners, which owns St. Vincent.
Dr. Lawrence Elmer, a neurologist at the Medical College of Ohio, said he's troubled by some of the misconceptions the public may have when reading about the Terri Schiavo case. She's described in some news articles as being in a "persistent vegetative state," which Dr. Elmer said means her higher brain functions - "what makes us who we are" - are damaged.
Dr. Elmer said even neurologists disagree over what they'd recommend to family members of such patients, though "all of us would agree that when someone is in a persistent vegetative state that should be considered the final outcome."
However, this advice is different from what a doctor might suggest family members do. He said early in his career he might have advised family members to withdraw feeding tubes in these situations. Today, he said his opinion has changed. His basic advice is if family members are committed to caring for the patient and visiting the patient, he'll push them to keep feeding tubes in. However, he'll also tell family members to consider not going to any extra measures, such as administering antibiotics in case of an infection, and let nature take its course.
Still, he said it's essential that the family decide this key question: Is this the way this person would want to exist?
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