Linda Swan was livid. The Congress, she said, should never have involved itself in Terri Schiavo’s plight.

Schiavo, severely brain-injured and living in a Florida hospice, has been at the heart of court proceedings over her husband’s bid to let her die with dignity after 15 years in a persistent vegetative state.

“Just let it be,” Swan said. “Let it be comfort measures, and let her go to a better place.”

Let it be a lesson, too.

“Nobody walking in these United States should be without a living will,” said Swan. “Stick it in your shirt, your sock, whatever, but have one.”

Chad Swan’s case

Around the same time that Terri Schiavo became disabled, Linda and Frank Swan of Turner were ending a 13-month vigil by their son’s hospital bedside. Their days consisted of convenience food, fitful catnaps and lots of crying.

Chad Swan’s brain stem had been severed in an automobile wreck in Turner not far from his home.

He was alive, but only because surgically implanted tubes kept him nourished and hydrated.

Chad Swan was in what physicians call a persistent vegetative state. He was breathing, but his brain wasn’t working.

“We were told he was living a life worse than death,” said Linda Swan.

It was a life, she added, that Chad had said he never wanted to live.

Not long before he was critically injured in that January 1989 crash, he had visited a classmate and her family at Central Maine Medical Center in Lewiston. She was in a coma, also severely hurt in a car wreck.

After that visit, he told his brother Scott that should anything as horrible happen to him, he wouldn’t want to be kept alive by extraordinary means. A few evenings later, he repeated that choice to his parents.

That conversation later became crucial.

After many months of keeping Chad alive, Linda Swan said, doctors determined that he was essentially brain-dead, that he wouldn’t recover from his injuries.

In September 1989, nine months after the accident, the family petitioned the court for permission to stop giving Chad food and water.

That began a saga that could have been taken from today’s Schiavo headlines.

While the request lingered months without a judge setting a hearing date, Chad’s body rejected his feeding tube.

Linda Swan recalls that it was early on the morning of New Year’s Eve 1989. A CMMC doctor called Linda and Frank, she said, to tell them that physicians making their rounds had discovered Chad’s feeding tube had fallen out.

“God and Chad had intervened,” she said.

A judge then stepped in, ruling in an emergency hearing that a tube giving Chad only water and medicine could be inserted.

The family objected.

On Jan. 10, 1990, Superior Court Justice Thomas E. Delahanty II ruled that the Swans could remove the water tube and refuse to allow another feeding tube to be inserted.

District Attorney Janet Mills immediately appealed Delahanty’s decision to the state’s Supreme Judicial Court. Delahanty stayed his ruling until the high court could hear the case.

That came on Jan. 23.

Mills argued that Chad Swan was 17 when he relayed his thoughts about being kept alive by artificial means, and therefore wasn’t of legal age. She argued his desires were not legally valid.

But the Swans’ retelling of their discussion with Chad before his accident convinced the justices that if he could choose, Chad would choose not to live in the vegetative state he was in.

In an unusually speedy ruling, the justices rejected Mills’ arguments and upheld Delahanty’s ruling.

The next day Chad’s hydration tube was removed.

He died on Feb. 4, 1990.

* * *

No family should have to go through the agony that her family went through for 13 months, Linda Swan said.

Living wills can prevent that grief.

“It is a last gift” to those left behind, said Sally Brochu, a certified Catholic chaplain and director of pastoral care for the Sisters of Charity Health System. The living will, she said, becomes the gift of peace of mind, knowing that the wishes of a loved one are carried out.

Brochu has ministered to the families of patients at times when death is imminent and decisions about continued treatment arise.

In cases “where the person has spoke about their wishes, that makes it quite a bit easier,” she said. But lacking those conversations “makes it very hard at times, almost traumatic” for family members who must decide whether or not to use extraordinary measures to prolong life.

Those decisions “are a huge responsibility,” Brochu said.

A living will helps relieve people of that responsibility, she said, and also helps to ensure that the patient’s desires are carried out.

Such advance health care directives also help doctors and other hospital employees provide services in accordance with their patients’ wishes. That’s in part why St. Mary’s and Central Maine medical centers, as well as Androscoggin Home Care and Hospice, offer them free to anyone who wants one.

Julie Shackley, AHCH’s chief operating officer, said, “We always ask” if patients have living wills. Those who don’t, she added, are given the opportunity to get one.

Lori Windsor, the group’s community relations specialist, said she sees more and more hands being raised when she asks audiences how many have living wills.

Both women said it’s important that people talk with their families about end-of-life issues and then, if they choose to, do the paperwork and execute the directives.

* * *

Windsor said she already has hers in place; Shackley said that one of the silver linings of the Schiavo case is that it’s encouraging people to talk about end-of-life decisions. She and her husband have started to discuss their choices, she said, and will follow that up with filling out advance health-care directives.

Windsor and Shackley noted that various forms of the wills can be found in the Internet, too; some long and more detailed, others brief and to the point. They said people should discuss their choices with loved ones, with their doctors, with clergy and sometimes their lawyers.

Wills or advance care directives can also be changed at any time as circumstances and personal wants evolve.

The important thing is that people get them, they said.

“No one,” noted Linda Swan, “should be without one.”

What is a living will?

A living will is a written legal document consisting, in Maine, of two principal sections that protect your medical rights if you become unable to make decisions.

The first section allows you to name someone as holding your power of attorney for health care. That’s the person who will make decisions about medical care, including life support, if you can no longer do so.

Experts say it is important that you have a conversation with that person so that they understand your choices.

The second section is the will itself. There you can spell out your wishes about providing, withholding or withdrawing medical care if you can no longer speak and if:

• You have an incurable, irreversible condition that will soon result in death.

• You lapse into unconsciousness and it’s medically unreasonable to expect that you will regain consciousness, or

• The risks and burdens of treatment outweigh the expected benefits.

Source: Choice In Dying, Inc.

What can you do?

Several forms for advance directives or living wills are available locally without charge.

In Lewiston, people can request one at St. Mary’s Regional Medical Center’s front desk or chaplain’s office, or at Androscoggin Home Care and Hospice on Strawberry Avenue. Both organizations have social workers and others available to help people with questions regarding their advance health-care directives.

People also can visit Central Maine Medical Center’s Web site – www.cmmc.org – and download a Maine Health Care Advance Directive form, then print it and fill it out. Click on the patient and visitor guide, then the inpatient guide and then advance directives.

An Internet search using “living wills” as key words will also turn up hundreds of forms, some free, some available at a cost. Not all comply with Maine requirements, so experts advise caution when selecting one.

Besides the standard Maine advance directive, AHCH officials suggest people also consider using the Caring Conversations workbook and forms, or using the Aging with Dignity’s Five Wishes program.

Living wills witnessed in Maine may not be honored in other states if they haven’t also been notarized. For more information about the legalities of living wills, people should speak with a lawyer.


Only subscribers are eligible to post comments. Please subscribe or to participate in the conversation. Here’s why.

Use the form below to reset your password. When you've submitted your account email, we will send an email with a reset code.