Hospice Care: No One Should Die Alone

Vigil volunteers receive special training and are part of a team that works in shifts, to be there for the patient when doctors or other caregivers have determined that death is imminent -- usually within 24 or 48 hours.
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The woman, a grandmother who lived in New York City, was in her final hours when Abby Spilka came to sit by her bedside. The end was peaceful. "Watching her take her last breath was like watching a butterfly fall asleep, its wings fluttering progressively more slowly until they become motionless," says Abby.

Abby is part of a dedicated corps of vigil volunteers in New York and around the country that embodies a key tenet of hospice care: that no one should die alone. "Human connection is very important at the end of life," says Abby, who has been part of six vigils, is an active hospice volunteer and blogs about her experiences.

Abby and other vigil volunteers with whom I've spoken say that being with a person as they die is one of the most profound and intimate of human experiences. Alison Reynosa, who coordinates the vigil volunteers at the agency where I work, Visiting Nurse Service of New York Hospice and Palliative Care, puts it this way: "It's an honor to be in someone's presence as they take their last breath. It's an amazing experience. It's so important to be in the moment and just go with whatever happens."

Vigil volunteers receive special training and are part of a team that works in shifts, to be there for the patient when doctors or other caregivers have determined that death is imminent -- usually within 24 or 48 hours. Then Alison puts out the call, via email, for volunteers. Abby, for one, makes it a priority to answer the call. "When you're sitting at your desk facing a deadline, with 42 emails to answer and the phone ringing off the hook, and you get email that says a complete stranger is dying alone, it gives you perspective," she says.

The volunteers are already part of the hospice volunteer program, paying regular visits to a patient who has a life-limiting illness, offering emotional and practical support for patient and family. The vigil visit is quite different, and these volunteers receive an additional eight hours of training. Nurses, social workers, bereavement counselors and other experts speak to the volunteers about the physical, psychosocial and spiritual aspects of a person imminently dying, including what happens to the body as it shuts down.

Usually, vigil volunteers sit with a patient who has no family nearby, but sometimes family members have to step away briefly or need support themselves. Alison recalls how vigil volunteers supported a husband so he wouldn't have to be alone as his wife of 50 years lay dying. "He was so open and honest," Alison recalls of the husband. "He spoke about how they met, how they belonged to each other, what she was like. They had no children, and he was extremely grateful for that opportunity to speak to other people about how he felt about his wife."

Tips for Sitting Vigil

1. Be Prepared -- It is important for someone keeping vigil to be comfortable with death and dying. During training, VNSNY Hospice volunteers chart and reflect on their own experiences, including the first death they can remember, a "most difficult" death, and thoughts on who they would like to be with them in the room for their own death. Alison encourages vigil volunteers to keep a journal of their experiences.

2. Know What to Expect (But Expect the Unexpected) -- Understanding what to expect is critical when sitting vigil. Training prepares the volunteers for the experience Alison explains: "We teach them about 'nearing death awareness,' a set of behaviors that are common among those who are near death, but can be misinterpreted as confusion or disorientation." People who are experiencing signs of nearing death awareness may:

  • State that they have spoken to those who have already died.
  • Speak to people and see places not visible to others.
  • Describe spiritual beings and bright lights.
  • Talk aloud to people who have died before them, such as their mother, father, or close friend.
  • Make "out of character" statements, gestures or requests.
  • Describe another world of peace and beauty.
  • Tell you exactly when they will die.
  • Make hand gestures, reach for or hold unseen objects, or wave to unseen beings.

Remain open, supportive and without judgment, allowing the dying person to share whatever he or she is experiencing.

3. Have a Snack -- Mundane as it sounds among matters of life and death, volunteers are encouraged to make sure they arrive at a vigil well-fed and comfortable so as not to be distracted from the moment by hunger or gnawing heat or cold.

And transition from work mode, including changing out of office clothes and silencing the cell phone, to make an emotional and spiritual shift..

4. Get Centered and Remain Present -- Alison emphasizes to volunteers the importance of simply being present in the moment. "It's so important to be comfortable with just sitting and being a presence for those who are dying," she says. "Make sure you are centered before you enter the room, and focus on your intention, which is just to be present."

She suggests beginning with an introduction. "Hi, I am Alison. I am here with you. I am just going to breathe with you." And then tell the person what you are doing. "I am going to sit at your side... I am going to hold your hand."

Abby says she sometimes reads, either silently or out loud depending on the situation, poems or meditations when she is sitting by the bedside. Alison sometimes talks and soothes, in English or Spanish, depending on the patient. But often, they and other volunteers sit in silence, stroking a hand, listening to breathing (their own and that of the patient), meditating, humming or softly singing. "It is nothing more, and nothing less, than sending love and peace to the person you're with," says Alison. "You don't even have to speak it. You can communicate it in your thoughts."

Have you ever been present at the moment of death? Please share your experience.

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