J. Adam Fenster/The Gazette Nurse Anne Butler (right) and Dr. Ruth Kevess-Cohen go over a list of palliative care patients, discussing their ailments, needs and wishes, religious considerations and family situations during a morning meeting at Holy Cross Hospital in Silver Spring.

For related stories, please see:
Being allowed to grieve and cry;
Palliative movement growing nationwide;
and ’I knew people actually cared’

The old man's frame was small and fragile under the white, knitted hospital blankets tucked under his arms. His gray hair was sparse and he looked tired. He had tubes in his nose and a connection to a heart monitor attached to a finger. When he tried to speak, his words were slurred and gurgly, hard to interpret.

But Anne Butler, nurse coordinator for palliative care at Holy Cross Hospital, stood by the man's side with his right hand in both of hers, carefully deciphering his speech in the quiet room in Silver Spring.

He wanted to eat.

The 75-year-old man loved to eat. But he couldn't, not easily. He'd had a stroke several months before and his throat muscles had loosened, making swallowing and speaking difficult. He had pneumonia and a urinary tract infection.

Death was not imminent. But at best, with proper care, he had six months to a year to live.

Butler's job as a palliative care nurse was to make the man comfortable, to talk with him and his family, to find out what could be done to make his final days easy for not only him but also for the ones who cared the most about him.

Butler was going to treat the man and those who loved him with kindness, to show that he and his life still mattered. She needed to treat his symptoms and help ease his pain but she also had to help address his needs, goals, fears and concerns. In addition to lending support for the man, she would also provide support for his family as they reached a transition point in their own lives.

"How are you?" Butler asked him, reaching to touch the man’s wrinkled face.

"Not so good," he softly slurred, focusing on her with sharp, blue eyes, indicating that even though his speech was slow, his mind was not.

"Tell me what’s not so good," Butler kindly responded.

He was hungry. But he didn’t want to eat through a tube, an option his doctors were considering. He wanted to use his mouth, his teeth, his tongue, his tastebuds, all his senses.

"What would you like to eat?" Butler asked.

"Steak," the man promptly responded.

"I figured you’d say that," said Butler, who had previously spoken with the man’s wife on the phone and learned about his love affair with food. "If I got steak and mashed it up, would that do?"

No, it wouldn’t.

"Have you always been this ornery?" Butler asked, stroking his balding head. He didn’t answer, but for a moment, a devilish glint shone in his eyes indicating that yes, he had.

The doctors knew a feeding tube would allow him to easily get his nutrients, Butler told him, but she knew his wife didn’t want that and neither did he.

"I don’t want that," the man said. "I’m in the Lord’s hands now."

"What’s your greatest fear right now?" Butler asked.

"No fear," the man responded, still gazing at her.

"If you had one wish, what would you wish for?"

"Don’t know."

He just wanted food: filet mignon, soft clams, bread pudding. Butler said she’d see to it that he got the food, because he could eat some things, softer things, with the assistance of one of his daughters who was a nurse, and would get as many nutrients as he would if he had a feeding tube.

Butler’s job was to improve his overall quality of life. If the man wanted to eat, he would.

"How about a Slurpee from 7-Eleven?" she asked.

"I don’t go for cheap stuff," he responded.

He was silent for a moment, and for a minute they just looked at each other.

"Are you worried about dying?" Butler asked.

He immediately began to sob, letting out a soft, continuous, heart-wrenching wail as his eyes filled with tears that threatened to spill over.

"My Lord watches over me," he mumbled. He said he wasn’t scared. But he missed his wife, who was home with the flu and couldn’t come visit him.

"You know what I think? I think you want to be with those who love you. I think you want to go home. I think you want to be at peace," Butler said.

He sobbed louder, a few tears running down his pale, wrinkled cheeks.

Butler asked if he wanted a chaplain, but he said no.

He was crying not because he was sad, he said, but because he was rejoicing in the Lord. He was ready to go home. Tears, he said, "cleanse the soul."

"We want to work to see that you’re at peace," Butler said.

"Thank you," the man replied.

Looking after the patient, and the family

Before Butler went to visit the man, she spoke with his attending physician at Holy Cross to learn more about his condition and about the possibility of putting him on a feeding tube. As a palliative care nurse, that was part of her job.

Palliative care, providing terminally ill patients and their families with the best quality of life until death, is an approach infrequently found in hospitals where doctors are traditionally expected to bear medical news, but are not expected to provide a shoulder to lean on or act as a sounding board for patients and their families.

Holy Cross has had palliative care for two years. It focuses on not only addressing a patient’s symptoms and medical needs, but also addresses emotional, mental and spiritual needs and goals, as well as those of family members.

After speaking with the man’s doctor, Butler read through his file, then called his wife of 57 years to learn more about him and how the family was doing.

"We really want to be a support," Butler told the man’s wife, after learning more about the stroke that impaired his ability to eat. "It’s important you be included in discussions and kept up to date."

He loves to eat, the wife told Butler, but she was afraid he would choke. He had choked on water earlier that day.

"We don’t want him to choke to death, either," Butler said after listening momentarily. She explained to the wife that sometimes a person whose throat muscles have relaxed can’t swallow liquids like water easily, but can swallow foods with a slightly thicker consistency.

"It’s more important to look at him as a whole person," Butler told the wife. "He’s asking for food. The feeding tube has one purpose and that’s not to give him the satisfaction, the pleasure and enjoyment of eating."

They discussed the benefits and burdens of the feeding tube. They didn’t want the man to starve or choke to death. Eating would give him pleasure and be a social activity because someone, probably his daughter, would have to help him.

"It’s not going to change the ultimate outcome in his situation," Butler kindly told the wife. "He has said he doesn’t want the tube in; we need to accept that. We need to do the best we can to make him comfortable."

Then she asked the wife about her husband’s faith and listened for a moment while the wife explained that her husband was very spiritual.

"If he’s putting his life in God’s hands, what’s the worst that can happen?" asked Butler, while making notes on a piece of paper in the man’s file.

She listened intently for a moment more.

"Oh my, if he’s waiting to go home to the Lord and he’s waiting for a better place, then quality of life is what matters," Butler said softly.

She was quiet again and then: "Who do you look to for support? Who’s helping you these days?"

The answer was her family, her friends, her church. She was all right, the wife said. She just wanted to love and support her husband. So she and Butler made arrangements to meet together with her husband’s physicians the next day.

There was only one more question Butler had. "As I look at his chart, I don’t see any directive for DNR [do not resuscitate]. I don’t say that to alarm you."

What did the wife want? What did she believe her husband would want? Butler asked.

The answer: Peace and a dignified death if his heart stopped or if he stopped breathing naturally.

"I am very grateful for your sharing," Butler told the woman at the end of a 40-minute phone conversation. "I have learned so much from you about your husband that I couldn’t learn from a chart."

Preparing for the rounds

Days begin early for the palliative care team. By 8:30 a.m., team members are checking phone messages and e-mail. They make basic plans for the day and confirm patients’ locations in the hospital.

And around 9 a.m., the half-dozen team members begin their rounds, during which the palliative care team discusses their patients, their families and their needs. The care team—nurses, advising physicians, chaplain and social worker—update each other to the point where they really know the patients and their families. The patients are referred to the care team through their physicians.

On a Thursday in November, Butler, palliative care nurse and project coordinator Andrea Ferris, palliative care chaplain Linda Arnold and physician advisor for palliative care Ruth Kevess-Cohen gathered in a small conference room.

They discussed a 75-year-old woman with pneumonia and depression who had said she wanted to go to sleep and die, and a 54-year-old man with small-cell lung cancer who outlived his prognosis and was determined to be optimistic about his illness. They talked about a 37-year-old woman with end-stage AIDS, a 51-year-old woman with cervical cancer.

They reviewed a 78-year-old man recently admitted to the hospital with carcinoma and atrial fibrillation—a type of heart arrhythmia—who had been having problems. His oncologist had given him hope, but his physician believed his outcome was not good. The man had said he didn’t want to be a burden on his children—his wife died of lymphoma and he remembered what it was like to take care of her.

Butler tried to educate the man’s son, a lawyer, about palliative care services. She spoke to him while she thought his father was asleep in his hospital bed, and told him that palliative care focuses on the reduction of suffering and quality of life.

"The father opened his eyes and said, ‘I think I need that,’" Butler said.

Making time for those who need it

After rounds, the care team divides the caseload and prioritizes the order of patients.

Ferris will often visit new patients and their families first, then check in with old ones. But sometimes a patient is in pain or a family member has a question. Then that person will likely become a priority, Butler said.

During they day, the team will review charts and record patients’ progress, Butler said. She and Ferris will do fact-finding by speaking with doctors and nurses about their patients, looking at nurses’ notes and speaking with social workers. Then they’ll develop questions about the patients and speak with the attending physician who recommended the patient to the hospital’s palliative care program.

They speak with the physician about how palliative care can help their patient, then will meet with the patient’s family. They help their patients clarify their goals and help the patients’ family members deal with their sadness and grief. They provide a listening ear, a shoulder to cry on. All afternoon, it’s more of the same, Butler said.

And it’s time-consuming. "Many times you go, ‘Oh God, I’ve only gotten to two cases,’" Butler said.

It’s because the team doesn’t put a time constraint on the patients and families who need their guidance and help with clarifying goals.

As the palliative care team provides patients’ guidance and counsel or works to grant last wishes — one man wanted nothing more than to work on his car in his garage before he died, and was able to go home and do so — team members said they have to know themselves and their own beliefs about death and dying in order to go to work each day.

"You have to know where you are yourself," Butler said.

But the work is rewarding and the nurses get to know patients and their families very well.

"Each family for me, I have a special memory," Ferris said. "It’s like a memory book in my mind."

On a Thursday in November, Ferris recalled one of those memories as she sat with Silver Spring resident Patricia Fernandez in the hospital, looking at a photo collage Fernandez had made of her godmother, Agueda Martinez.

Martinez, 70, died in November. When she came to the hospital, she was thin and sickly and would not speak. But the photos showed her plump, smiling and full of life, and Ferris and Fernandez looked at them fondly.

"The day before she left here [the hospital], she actually spoke. She smiled," Fernandez said.

"Yeah. Yeah, she did," Ferris recalled with an almost wistful grin.

Dealing with the emotions

During the early morning hours at her Ellicott City home, Butler prepares herself for the day. She and her husband, Tom, share a ride to work. It takes about an hour and Butler uses the time in the car to reflect.

"I’m the type of person who values quiet," she said. The drive is a "time of pondering," time for her to attain some perspective because although her job is rewarding, it’s not always easy since her patients’ lives are in balance between life and death.

The days are long, usually about nine hours for Ferris and between 10 and 12 for Butler.

"I don’t stop for lunch. I just keep going," Ferris said. "The days go by very quickly."

Still, Butler and Ferris try to work normal hours and leave at a decent time of day. Butler said Ferris, "a wonderful mother," tries hard to balance her job with her life at home and be there for her children.

"There are days when I could work 24-7," Butler said.

That’s because she’s often marking people’s memories. "It’s the only gift we can empower families to truly provide: living life with no regrets," she said.

That’s why it’s sometimes hard to tear themselves away from the patients and families they’re helping at the end of the day.

"It’s the type of work you really need to love and have a passion for," said Butler, who chose her profession because of a strong desire to help others. The passion, she said, is often fueled by people’s gratitude for the palliative care team’s support.

"It’s the little things, many times [that keeps the team coming back to work]," she said.

Ferris said she’s known since eighth grade that she wanted to be in a helping profession. "My motive was to help people. I really wanted to help people," she said.

Ferris initially went into regular nursing but said she had a longstanding interest in hospice because her mother had been an active hospice volunteer and told her many stories about her experiences there.

But then her mother became ill with cancer and Ferris became her mother’s primary caregiver.

Eventually, her mother died and "once I had distance from that experience, I thought I’d like to help other people going through the same thing. It just worked out," she said.

"Andrea is a very compassionate person," said her older brother, Geoffrey Briefs. "Palliative care suits her very well."

She’s a good listener, wants to "do right by people" and is very empathetic, he said. "Who wouldn’t want that type of advocate by their bedside?"

This is what’s best for her, Ferris said. The job is uplifting and rewarding. The rewards, she said, are "to hopefully have made a positive difference for people who are going through this, to have made it a little bit easier."

For her, Butler said, the job is more of a calling and she sees herself as "a vehicle of hope."

Her husband Tom said the job suits her and relayed a story she’d told him about riding in the car with her father when she was very young, and seeing a homeless man on the side of the road. She asked her father to pull over so she could help him. "It showed her natural sensitivity toward people in need."

Despite the fact that most medicine in the United States doesn’t involve religion, Butler said her faith in God is a "vital ingredient" in her ability to do her job and is essentially the core of what she does.

"If I didn’t have that, I don’t know how I could ever do this. I could never do this without it."

Her job, a privilege, enables her to be "a vehicle of goodness and compassion," she said.

‘I think we need to live our lives’

Over time, some health care professionals lose their compassion after constantly dealing with the sick and dying, Butler said, and sometimes want to get out of this line of work. That’s something she hopes won’t happen to her.

"The greatest tragedy for me would be to become used to people dying," Butler said. "I see it as more of a ministry. There has to be a greater dedication to it."

"She comes realizing that it’s not the end of life but a transition point for people," Tom Butler said. "She helps people make that transition. That to me is the hallmark of a caregiver."

The job is a challenge, Anne Butler said, but has been a valuable experience and is something she often reflects on when she’s working to get things done in her own life.

"It touches so much on the meaning of life and what’s essential," Butler said. "I’m faced every day with how short life is."

Sometimes being faced with the fragility of life can be overwhelming, Butler said, which is why it’s important to have supportive co-workers and family. She said she values her husband and the palliative care team.

The key to maintaining a balanced life is the ability to separate work and home, she said. In good weather, she likes to garden. She walks, reads, shops, listens to music. Bills need to be paid. Dinner needs to be made.

Ferris does household chores. She exercises on the weekends and participates in a church group. She attends her children’s basketball, soccer and baseball games and helps her children with their homework.

"My kids know that I’m a nurse that works with very sick people," Ferris said. "They know that sometimes sad things happen. That’s been incorporated into their understanding of life. We don’t ignore these things; we also don’t fixate on them, either. I think we need to live our lives."