Claire & Don: One Family's Struggle

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For all intents and purposes, Don McCarthy died in 1981 when his car wrapped around a telephone pole. But it would be 15 years before his wife could give him a decent burial.

Pull-QuoteClaire McCarthy had a six-month-old baby when she learned that her 25-year-old husband had been seriously injured in a car accident. Friends since high school, they had been married just three years.

Don had suffered major brain damage and was in a coma. He spent a month in the intensive care unit (ICU) in a Boston hospital, where he was hooked to total life support, including a respirator. The doctors made various attempts to relieve the swelling in his brain, from making burr holes in his skull to giving him a high dose of barbiturates.

Attempting a Cure

After a month in the ICU, the doctors tried to pull Don out of his coma, but he did not respond. Eventually, he was transferred to a long-term care facility in Cambridge. Claire was 24 years old. She never imagined she'd spend the next 15 years of her life struggling with charting the course of her husband's treatment.

When Don was first transferred, Claire was optimistic. Although the doctors at the hospital had told Claire he would never recover, she still held out hope. Her husband was young and healthy. He would pull through.

Claire visited Don every day and brought their daughter, Megan. "I can remember thinking he was looking at me," she says. On other visits, Claire would stand by his bed and show him pictures of Megan. But Don never responded.

When Hope Fades

Photo IllustrationAfter 10 months, a neurosurgeon put a shunt in Don's head to drain the fluid from his brain. They hoped that would help arouse Don. It didn't.

After a year, Don's physicians at the long-term care facility told Claire he would never recover. They advised Claire to join a support group of others who had injured family members. She attended and at her first meeting looked around the room. Most of the people were much older than her. They told Claire she had to move on: she was young, she had a baby, and things were never going to change. Claire says that after that meeting, she could not go into Don's room. She was feeling angry, scared, and guilty. Her husband had no idea what was going on around him; sometimes she would find him lying in his own excrement. "It was a horrible, horrible scene," she says.

Claire befriended a woman whose son also was in an irreversible coma. She sympathized with Claire, admitting, "If I had any guts at all, I'd bring in a gun and take care of my child."

Determining His Wishes

Claire had never felt comfortable talking about end-of-life issues, but Don had frequently brought them up. He was troubled by the Karen Ann Quinlan case and told her he never wanted to end up in a coma, hooked up to a respirator. Claire's mother had died from Lupus two years before Don's accident. She also had been on life support. Don told Claire he never wanted to end up like that.

Pull-Quote"I can remember having a huge discussion about this. He said, 'You are my wife and if anything happened, you'd have to make sure I didn't have to continue living this way.'" Claire pooh-poohed the discussion. "I thought it would never happen. . . I just didn't want to think about it, so I said, 'OK, I'll make sure.'"

Like most young people, Don and Claire had never filled out advance directives; Don never shared his feelings about death and dying with anyone else, including his parents.

After it became clear that Don's coma was irreversible, Claire began to think about whether she should help him die. Brought up Irish Catholic, she was frightened by these thoughts.

One night her husband had a seizure and the nursing home called to say they were transferring Don to the hospital. After that incident, Claire sought to have a do not resuscitate (DNR) order placed on Don's chart. His mother rejected the idea. Don was their only child. They visited him and fed him through the feeding tube. "I don't think they could give that up," says Claire. Two years later, Don's parents agreed.

Guilt and Confusion

Claire had opportunities to let Don go. One time, Don's lung collapsed; a resident called Claire late at night and asked her what she wanted them to do. Don had been in a coma about a year. Claire was confused. She ordered the doctor to inflate Don's lung. Years later, she had horrible guilt. "I could have ended it then," she says.

By 1986, Claire didn't know what to do. She talked to a priest at Boston College about stopping tube feeding. He supported Claire's decision. This was something she could do for Don. But his mother refused. She said Claire was trying to kill her son. Claire backed off. Don was in a coma for another five years.

Finally, in 1991, Claire took matters into her hands again. The thought of not doing anything was causing tremendous stress. She had considered divorcing Don to get on with her life. But she would have had to relinquish guardianship of him. As Don's wife and best friend, she felt she had to help him: "I never for a second believed my in-laws would think about what he wanted."


A Legal Struggle

She again talked to a priest and sought legal advice from an attorney in Boston who defended the first right-to-die case in Massachusetts, in which a woman was allowed to stop artificial nutrition and hydration for her husband. That case gave Claire hope. Claire and her father, who had reluctantly pulled his own wife off life support, went to see Don's parents. They agreed to remove the feeding tube. A week later, they reneged. They then filed a lawsuit against Claire, trying to remove her as guardian.

In 1995, Don died of natural causes stemming from a lung infection; his lungs were bleeding internally. Claire was by his side and so was Megan, the daughter he hardly knew. His death was a horrific sight. There was blood everywhere. Nonetheless, Claire wanted to be there "to make sure they didn't do anything to stop the course of nature." Don's parents declined to be present.

Don's medical bill came to two million dollars for the years he lay in a coma. Claire was fortunate. The entire tab was paid through his employer, Digital Corporation. Without that support, Claire says, "I don't how we would have survived."

The Importance of Communication

Although an advance directive would have made a difference, Claire puts more stock in communication. In hindsight, it would have helped if Don had shared his end-of-life views with his parents in the way he had with Claire. "If they only understood how firm he was," she says.

Claire, now 39 and a successful banker, has completed an advance directive and appointed her sister as her advocate. "We have gone over every possibility and she has agreed to do what she has to do." Claire has talked about her wishes with her daughter and all of her family members.

Claire hopes others learn from her experience. "Have the conversation, talk about it with everyone." When it comes to life and death, she adds, "people have all different views."

Photo illusration

Mickey: Learning from Death | Joyce & Charles: The Hospice Alternative
Sabina & Perry: A Patient's Wish | Jonathan: A Planned Death
Mary & Warren: Coping with a Long-Term Illness | Claire & Don: One Family's Struggle

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