But Schiavo’s case also struck a personal chord for Knisely. Three times in the last five years, he’s had to deal with death in his own family. His father-in-law died, and his 2-year-old daughter died after she suffered a heart attack in her crib.

And, three years ago, his mother’s death forced his family to make decisions that made the Schiavo case and its heartbreaking complexity particularly poignant. Her death, he says, underscored the concerns a family can face when critical end-of-life decisions must be made. In hopes of helping others, Knisely, who chairs the church’s Standing Commission on Communication, has spoken about his mother’s death with parishioners and has written about it in his parish church newsletter.

Knisely’s mother had been ill for some time. About four years ago, as her condition worsened, the four children and their mom had what Knisely calls a family meeting. (Knisely’s father and mother had divorced a few years before.)

The meeting took place at Thanksgiving, a time when the family normally got together. Both Knisely and a brother, Andrew, are clergy. A third brother, Thomas, is a doctor and a captain in the U.S. Army. A sister, Elizabeth, had given up an administrative career to be full-time caregiver for their mother, who lived in a house across the street from Elizabeth’s northern Pittsburgh home.

After dinner, the four siblings and their mom talked. Spouses and children were elsewhere and would learn the details later. This was a decision to be made by the immediate family, and the topic was difficult, one most families usually choose to avoid. What was going to happen if their mom found herself unable to make decisions for herself? Who would make the decisions regarding her care?

A vital step

What happened surprised Knisely, but it also confirmed a vital step families need to take — however reluctantly — to avoid the type of central conflict that occurred in the Schiavo case, when family members had different ideas about what an incapacitated Terri Schiavo wanted in terms of medical care.

During the meeting, Knisely’s mother made it clear that she wanted as much care as possible. And she said, in no uncertain terms, that she would rather not have her pastor sons directly involved in making critical health decisions for her.

‘‘She kept saying that we would kill her,’’ Knisely says, taking a break from his day at a coffee shop just down the street from his Bethlehem church. ‘‘She wasn’t frantic, but it was meant as a serious statement. She was saying that ‘you’re much too willing to think about the end of my life… you’re much too willing to consider that I would have to die.’ In her mind, it was clear she wasn’t ready to die. We talked about it. She was very concerned.’’

“There was an edge to the conversation,’’ Knisely recalls. ‘‘We weren’t at each other’s throats, but there was tension in the room. I think my mother was reacting out of that tension when she said that we would ‘pull the plug’ on her. It was frank and honest, and no one was trying to hide anything. We were being very honest with each other. I think it was really helpful to do that.’’

As the eldest, Knisely, now 44, would have been expected to make these decisions. But in light of their mother’s wishes, the siblings — with their mom’s approval — gave the doctor in the family, Thomas, medical power of attorney. Knisely kept the other legal powers.

‘‘My brother [Andrew] and I work at very different churches. His is at a very evangelical, much more conservative church than the Episcopal Church. We often find ourselves disagreeing on theological issues, but we agreed on this one. We thought her life was coming to an end, and we didn’t see a need to prolong it unnecessarily. I’m a Christian, after all, and I believe you go on to a better place.’’

Some of Joanne Knisely’s concern revolved around expectations she had about the remaining years of her life. ‘‘There were some things mom wanted to do. She wanted to travel. She wanted to see things. She taught art appreciation in the Harrisburg schools. She had an advanced English degree. But she never had the money to travel, and when she had the money, she didn’t have her health,’’ says Knisely.

Joanne Knisely’s health wasn’t the best when the Kniselys met at Thanksgiving, but she clearly held out hope that it would improve and that she eventually would be able to travel, Knisely says.

A medical crisis

About 14 months after the Thanksgiving meeting, Joanne Knisely’s already poor health took a turn for the worst. A series of operations had effectively removed nearly all of her stomach, leaving her unable to get adequate nutrition. In addition, her body was not processing her medication correctly. She had to return to the hospital for what Knisely calls some ‘‘fairly aggressive’’ surgery.

‘‘There was one operation they wanted to try,’’ Knisely recalls. ‘‘If Mom and Tom thought it was a good thing, I kept my mouth shut. I thought nothing good was going to come of it.’’ After the operation, Joanne never fully regained consciousness.

‘‘Mom had said she never wanted to be on a ventilator permanently, and we said fine. I certainly agreed with that. After the operation, she was put on a ventilator for about 24 hours,’’ he says, a precaution following surgery. But as her condition failed to improve, she had to be kept on the ventilator for about four weeks. Then, for technical reasons, the ventilator had to be removed and reinserted.

There was some discussion about what to do next, Knisely says. His mother was heavily sedated, and when doctors stopped administering the sedatives to see how she might feel about further treatment, they discovered she was paralyzed from the neck down.

“It wasn’t clear how coherent she was, with the vent still in. It seemed to me she was refusing to make any decision about her health. She couldn’t talk. She couldn’t write. There was no way for her to communicate. She was lying there, apparently conscious. That’s when we changed the course. Tom talked to the doctors, and he agreed. We decided to take her off the ventilator.”

In his pastoral work, Knisely now can speak from experience to the pain families have in facing this step at the end of a loved one’s life. Such a decision can be a difficult one, even if the patient’s wishes are clear, emphasizes the Rev. Andrew Gerns, a pastor at Trinity Episcopal Church, Easton, Pa., who spent several years serving as a hospital chaplain.

“If there is no advance directive, all sorts of problems can arise, but families usually declare a ceasefire until the patient has died. But, even if there is an advanced directive, if the patient has made their wishes clear to the family, family members have a hard time doing what the person wanted. They’re speaking for the patient what choice they would want,” says Gerns.

‘Gut-wrenching’ choices

“Making decisions like this is gut-wrenching,” says Barbara Rutt, who manages pastoral care at Lehigh Valley Hospital in the Diocese of Bethlehem. “They wonder if they are making the right decision, if there is any chance [the patient] will wake up.”

“Ethically,” Knisely says, “there may not be a difference between withdrawing care or withholding care, but pragmatically, there is a huge difference. If the family had disagreed at that point about the withdrawing of the vent, then we would have had a family fight, and Tom would have won, because he had medical power of attorney. We weren’t going to let that fight happen. We were all trying to be in constant communication with each other, and we were all clear that this is what we wanted.”

With the breathing device removed, Joanne Knisely lived another 90 minutes.

“We all prayed and said our goodbyes before the vent was removed,” says Knisely. “We read to her. She was breathing, but she was struggling and it was painful. But she was medicated, and we wanted to make sure she wasn’t frightened.”

When the siblings finished reading aloud the final chapter of C.S. Lewis’ book The Last Battle, about a journey to heaven — one of Nick Knisely’s favorite books as a child and one his mother often read to him — Joanne Knisely died.

“The nurse said her heart stopped. We cried and hugged and started the next steps,” says Knisely. “All in all, it wasn’t a bad way to go, surrounded by her children, reading a story she had once read to us.”

“I think because we talked about this with each other, we avoided problems,” he says. After their mother’s death, the surviving siblings have grown closer. “We have made an intentional effort to be with each other, to spend time with each other, as a family. We do this much more than we ever did,” Knisely says.

Knisely’s brothers live in Europe, and they have taken what he calls “mom trips,” traveled to places while they live on the continent. “I know this has put them out, financially, but one of the things mom said was that we weren’t to wait to do the things we wanted. ‘Don’t end up like me,’ she would say.

“We share the pictures [of the trips] with each other, all in a way of celebrating what mom wanted. We still know we disagreed over medical issues, but we tried to do the best we could, given the positions that each of us held onto. To me, this is an object lesson on how to fight fair in a family.”

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