RUMFORD – Lyanne Boivin had put off signing a living will until five days before she died of stomach cancer in April. In the end, she was too sick to know her final wishes could not be honored because she hadn’t filled out the right form.

Boivin’s living will specified that she not be revived when her heart or breathing stopped, but neither she nor her husband realized that Maine law required a separate “do not resuscitate” order, or DNR, signed by her physician.

Without it, emergency and other health care workers were legally obliged to resuscitate her, regardless of her wishes.

“She made certain decisions and as far as I was concerned, I had to honor her wishes,” Arthur Boivin said last week of his last-minute panic to get the right document, get it signed and get back home before his wife of 42 years died.

“She was a very proud woman,” Boivin said. “Most people did not know she was sick. She was able to keep it very concealed.

“She did not want a lot of visitors, except for her family,” he said.

Health officials acknowledge that the living will form given out by many hospitals and nursing homes in Maine often cannot be honored. Although the instructions that accompany the Maine Health Care Advance Directive Form say a separate DNR order from a patient’s doctor is needed, health officials acknowledge people often are not told about the requirement.

For people like Lyanne Boivin, who wanted to die at home, another document must be filled out and signed. That document is the Maine EMS Comfort Care/Do Not Resuscitate Order.

Developed a decade ago by doctors and other health care providers, the comfort care form is printed on orange paper and includes an orange wristband that alerts emergency first-responders of a DNR order. Without the orange form, or a DNR form from a doctor, first-responders are required by law to perform CPR on victims, regardless of patient wishes.

“There has not been a person I have mentioned this to that didn’t say ‘this is ridiculous,'” Boivin said.

But Jay Bradshaw, director of the Maine Emergency Medical Services, said first-responders must follow the medical orders of a doctor and not the sometimes-conflicting memories or wishes of well-meaning family members.

He said living wills are not always clear and concise, which is what emergency personnel need when they arrive on scene.

“It’s an awful position for an emergency crew to be in. It’s just a nightmare,” Bradshaw said Monday. “And it’s awful for the family, too.”

Julie Shackley, interim president of Androscoggin Home Care & Hospice, which provided daily care to Lyanne Boivin, said Friday she didn’t know why Boivin and his wife were not told about the DNR requirements when the agency was first enlisted to provide home health care.

Usually, once a patient provides a living will to the agency, the staff asks the doctor to sign a separate DNR and comfort care form. Shackley said it was “very possible” no one told the family about the additional requirements.

“The hope would have been that we would have advocated getting that done on Day One,” she said.

Shackley said the agency would investigate what went wrong in the Boivin case.

Arthur Boivin had urged his wife for weeks to sign a living will, but she was not ready to admit defeat, he said. She considered hospice “a place for dying people” and wanted to stay at home where she had built a life with her husband, a retired fire chief, and raised their five children.

As the national drama over Terri Schiavo intensified and Congress voted to prevent the Florida woman’s husband from carrying out her wishes, Lyanne Boivin decided she would make her own choices about her death.

“She said, ‘Let’s get this done,’ and we did just that,” Arthur Boivin said, using the back of his hand to wipe away tears.

After all that, Boivin said he was astonished, and livid, when he was told by an AHCH worker in Dixfield, less than two days before she died, that his wife’s living will could not be honored.

He also was angry that his wife needed a doctor’s approval to end her life.

Boivin has asked state legislators to consider changing Maine law.

“If the doctor doesn’t sign off, you can’t follow someone’s living will. I don’t feel we need a doctor’s permission to die. Not under those circumstances,” he said. “No way.”

Jane Bubar, spokeswoman for Rumford Hospital, said last week that when Congress decided to intercede in the Schiavo case in March, the hospital saw a spike in requests for living wills. She said the switchboard operators, who pass out the advance directive forms, do not tell people they also need specific DNR orders.

Bubar said the hospital has set up a table at past health care fairs to give people information about living wills and DNRs, “but virtually no one” was interested until the Schiavo case.

“It occurs to me it could be true” that people are not told they need more than a living will to ensure their wishes are heeded. “It’s too bad because of all of the new interest in living wills,” Bubar said.

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The Maine EMS Comfort Care/Do Not Resuscitate Order must be obtained from a doctor, nursing home, hospital or other health care provider. The forms are numbered and copies are not honored by EMS personnel.

The DNR order does not expire once a patient and doctor sign it.

The form comes with an orange wrist bracelet and an orange wallet card that easily and quickly alert emergency first-responders that a DNR order is in effect.

To cancel the order, a person simply tears it up and throws it away, with the bracelet and wallet card.


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