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Listening at Life's End: 'Nothing to Say, Everything to Be'

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Karen Asconi, a retired teacher, had just completed extensive training as a hospice volunteer, learning how to visit and comfort people at the end of life. On her first day of service, she was assigned two patients in a New York City nursing home. Karen decided she'd begin with the patient who the staff noted was chatty and alert, rather than the one listed as being nonresponsive.

As it turned out, fate had a different plan. "Somehow I ended up making my first volunteer visit to the woman who was nonresponsive," Karen says. "I thought, what do I do now? And the answer was: nothing. I said, 'Hello, I'm here for you,' and then just sat there."

Karen believes everything happens for a reason. In this case, she was being given an opportunity to put her hospice training to work--fast. "We learned in our training that sometimes there is nothing to say, nothing to do, and everything to be," she says. This approach focuses on active listening, and meeting patients wherever they are. "As human beings, we want to do, to make, to create," adds Karen. "But with hospice, often your presence is enough. Your energy changes the room."

Volunteers like Karen are a vital part of hospice care across the U.S. In fact, their participation is mandated by law. Organizations that receive hospice Medicare benefits from the government must have five percent of their direct care come from volunteers. In practice, these volunteers fill a key niche: Hospice uses team-based care to provide comfort for people at the end of life and support for family members. These teams are made up a number of skilled professionals, including nurses, social workers, spiritual care counselors, physicians and bereavement counselors. But the trained volunteers who provide nonprofessional services are able to supplement that care with the most essential of gifts--their time and their humanity.

My organization, the Visiting Nurse Service of New York Hospice and Palliative Care, provides intensive training to our volunteers, as well as support and supervision. In return we ask volunteers to commit to at least one year of service, visiting with one patient one hour per week in the home. Volunteers like Karen, who visit patients in a residential facility, have a small "caseload" per week. Responsibilities include providing companionship, support and respite for patients and family members. With additional training, volunteers sit at vigil services when death is imminent and may also provide pet therapy to patients who are interested. Many volunteers tap their reservoir of skills, whether it's singing show tunes with a music lover, offering art therapy, or helping to compile "final projects" or life reviews. "These are things that staff members don't have time to do--that's not why they are in the home," notes Michael Ambrosini, VNSNY's director of Volunteer Services & Community Relations. "But they are extremely valuable to the people we serve."

Recognizing the experiences and connections unique to being a military veteran, we often invite hospice volunteers who themselves are veterans to join in our recognition ceremonies honoring hospice patients for their military service, as part of the We Honor Veterans program. One recent ceremony turned emotional as three former paratroopers--the patient who was a Korean War veteran, the volunteer who was a Vietnam veteran, and hospice worker Joseph Vitti, also a veteran--reminisced together. A volunteer corps of former military wives, mothers and sisters provides an invaluable addition to the recognition ceremonies: hand-crocheted red-white-and-blue or camouflage blankets. "That small gesture of dedication is often overwhelming to our patients, especially at this time of reflection," says Joseph.

Training to Tune In
No matter the duties, all good hospice volunteers have one thing in common. "The primary thing we're looking for is people who are really good listeners. It's the most critical skill for this type of work," says Mike Providence, who manages our volunteer training and services.

A centerpiece of training classes is Mike's active listening exercise. He pairs up trainees, then has one member of the pair speak for five minutes about personal experiences with death. Meanwhile the other member is asked to listen while doing as little as possible--no questions, no affirming noises or nodding. When the listener lets go of the need to do something, Mike explains, he or she can focus wholly on the speaker.

The deceptively simple exercise is not easy, and the lessons learned are resonant. One recent trainee found himself at first asking, "What should I do?" But as the minutes ticked by, he realized: "I have to let go of the word 'should.'" Another volunteer found the challenge lay in making sure she remained present and involved, even as she restrained herself from doing anything active. "They have to learn to trust that they are enough in this moment," Mike explains.

Never is the skill of active listening more challenging than when no one is speaking--which is not uncommon in our field. Hospice often serves patients whose illness has progressed to a point where they are nonverbal and nonresponsive. Sometimes when Karen is sitting by the bedside, a nonresponsive patient might move a hand out from under a sheet and she will hold it lightly. Other times, she'll ask if the patient would like a little music and watch closely for a response. "But mostly, I find a chair, sit down and observe," says Karen, who has been volunteering for three years now. "We naturally seek validation--that we're doing the right thing, doing a good job--but we have to let that go to completely be there for another person."

When Ray Li visits a nonresponsive person at Haven, the inpatient hospice unit where he volunteers weekly, he focuses on breathing. "I breathe in and out with them," he says. "Sometimes, you can hear their heartbeat and match up your own. Silence is a form of communication."

He visualizes the person he is visiting, who is usually in the final days or hours of life, as riding on a boat on tempestuous waters, since everything is changing so fast and so profoundly. "As a volunteer, you are a calm person sitting by their side in that boat. It's important to just be present."

Kei Okada, a hospice spiritual counselor who also teaches volunteers-in-training, notes that calm energy has a remarkable ripple effect in times of stress. He recalls walking into a home visit recently and being greeted by the patient's son. "Even when he opened the door he was rushed and angry," Kei explains. "I felt I didn't have his time for my long introduction, so I just said, 'I'm here to listen to you.'"

When Kei sat, the son did not. "That made me nervous," Kei confesses. "But because of hospice training, I know to separate myself from his anxiety. I just sat down and quietly listened. The more I listened, the calmer he got. "

A Space Apart, A Space Connected
Entering the room of someone in their final days is to enter a sacred space, and our volunteers create their own rituals to separate themselves from the everyday pulses of the outside world in order to be wholly present for patients and family members. Karen and Ray both meditate for several minutes before beginning their visits. Karen also uses the clinical regulation--washing hands before and after visiting a patient--as a mindful ritual. She uses another everyday task, taking the city bus home, as a time to lower her eyes, listen to the engine rumble, and reflect silently on the day.

While the time volunteers spend with people at the end of life is in some ways a time apart from the day-to-day, it is also deeply connected to the world. Their service connects them to the web of humanity and to the continuum of life and death. Karen notes that she can see her own path in the people she cares for. It is also a way to be there for others when no one was for her; she was alone in caring for her mother and father when they died, within months of one another. For Ray, who grew up in China, where death is often feared and not spoken about, spending time with people at the end of their lives is teaching him profound lessons about life's one inevitability.

"I am a humble student to these great teachers--people who teach through their life and death," says Ray, who notes that he became a hospice volunteer to learn more about death. "While you are there, you are not learning through your mind. You are learning through the wholeness of yourself. You are learning something that will serve you when you face the last stage of your life--but you will also benefit from it for the entirety of your life."

To learn more about becoming a hospice volunteer, visit the Hospice Foundation of America or VNSNY's volunteer opportunities.