TOWSON, Md. – It looked as though she was getting close. The nurse placed a call to the son, who could not be found.
The patient’s glassy eyes stared at nothing. On one side of her throat, an artery bulged with fluid. Her breathing became loud, irregular, stopping then starting with a gasp.
Ten minutes before, social worker Mimi Thomas had entered the room to find the woman restless and agitated. She no longer responded when spoken to.
“It’s OK to let go when you need to,” Thomas said softly, bending to the woman’s ear.
“You’re coming out of your body and you can look down and see yourself on the bed,” Thomas told her. “You can see your body from above, getting smaller and smaller and you’re feeling peaceful now…you’re above the room…above the building, travelling high above the earth…totally surrounded by light…now you’re next to God.”
“Oh, oh,” the woman said suddenly, as though seeing again. Her breathing slowed; a gurgle rose from her chest. Under the sheet, her legs continued vibrating as though an electric current were passing through. But she had stopped fighting.
“She’s much calmer now,” Thomas said, stroking the woman’s forehead and shoulder.
Later, in the hallway, Thomas is asked if the experience is difficult. “It’s so powerful, I feel high,” she answers, her face glowing. With her assistance, the patient has moved closer to a peaceful end. Death would come before dawn the day after the next, with the woman’s adult son at her side.
At Stella Maris hospice in suburban Baltimore, death is neither medical emergency nor treatment failure, but part of the cycle of life.
And it’s Thomas’ work to be there as death occurs — to reveal and demystify it. “This culture has big problems with death,” she observes.
We buy wrinkle cream, hide gray with hair coloring and fanatically exercise to stave off signs of aging. Even face-to- face with death, we deny that it’s really happening. Some feel panicky and powerless, and never get beyond complaining about the way a patient’s hair is combed. Others don’t talk at all, but pace, sit and stare.
But those willing to journey into the intimate territory of pain, loss and fear that can accompany death often find that dramatic, even miraculous, transformations occur — for patient, family and caregivers.
The hospice workers who walk that journey must be a special breed of people.
Sandra Fink, who coordinates the Center for Grief and Loss at Stella Maris, always asks potential applicants — whether paid or volunteer — what they do for fun. She doesn’t particularly care whether it’s knitting or reading racy novels. “It’s the ones that don’t have an answer that I won’t hire,” Fink says.
She knows that those who choose to work with the terminally ill have a strong sense of vocational mission. But they must have other outlets, for that earnest “wanting to matter” to patients can burn out the best of counselors.
“We’re not saving lives,” Fink says. “We’re helping to prepare people to lose them.”
The mantra of hospice care is to restore dignity for patients who have been through months of exhausting, depersonalizing hospital procedures leading up to the final prognosis.
“What we try to do is help people regain a sense of power,” Thomas says. “People will say: `I want to see my dog’ or `I want a cold beer.'” She smiles. Last spring, she says, the staff arranged to bring a woman’s horse by trailer for a visit in the field behind the hospital.
Thomas recalls a patient in her mid-50s who entered the hospice “shaking like a leaf,” unable to “decide whether or not she wanted a drink of water.” Nor, with her cancer spreading, could the woman decide whether to continue chemotherapy that might prolong her life a month or two at best.
Over time, Thomas assured her of her right to be heard and respected. She encouraged her to claim her anger at past events, at the very cancer that was cutting her life short.
One morning three weeks after her arrival, the woman sat up in bed, requested a less expensive room and stopped chemotherapy.
Sister Sharon Burns, the hospice chaplain, delivered the eulogy at a funeral celebrating how the patient became, in her last weeks, the confident and strong person she had always wanted to be.
Burns, a Sister of Mercy and theology professor for 35 years, approaches patients and families as a humanitarian first, as a religious professional when she knows that will help.
“The most spiritual thing we do is love and care,” she says, encircling the air with raised palms. “All of us want to know we made a difference in this world.”
She recalls an AIDS patient who had retreated behind a mean and bitter disposition. The former artist had lost half the length of his fingers on both hands to infection.
Burns gently encouraged him, bringing him watercolors. “He was afraid he wouldn’t be good at it anymore, you know,” she remembers. “That he couldn’t even pick up the brush.”
One day, to her surprise, he produced a small, beautiful watercolor, and asked for a pen to sign it. Several days later, he died peacefully.
“It’s hard to describe, but people grow here,” Burns says.
In many ways, hospice care returns to early 20th century life, when it was not unusual to die at home with one’s family. But modern medicine tends to isolate the terminally ill, making death more obscure.
Demystifying death may involve explicit discussion of its physical and behavioral aspects. It helps to know that the yellow or blue skin tone, fevers alternating with cold spells, and mental disorientation are normal.
Families enter hospice care in crisis and disequilibrium. Counseling can reassure them that the range of emotion — guilt, anger, abandonment, powerlessness and the reluctance to let go — is healthy, Thomas says.
One common mistake is not talking about what is obvious, especially to the person dying.
“People will avoid the discussion [of death] like the plague,” Thomas says. “But who are they really protecting?…The person going through it needs to talk about it because they’re scared. And talking about it frees the person to make that jump.”
Those preparing to die need to understand the significance of their lives, Thomas adds. To help, she guides them to revisit what they most enjoyed: the feel of the wind while bicycling, the way garden soil crumbles between the fingers, treasured relationships.
And when death is imminent, saying goodbye means telling the dying “anything and everything you need to,” Thomas says. “…Talk about all the things you did together…how you loved them and will miss them.”
Research shows that even when they can’t respond, the dying can hear — right up until the moment of death, she adds. Non- verbal touch, such as holding a hand, also takes on more meaning.
Thomas has been a part of 40 deaths since joining Stella Maris last spring, but remains in awe. “Death is beautiful…or can be beautiful,” she says. -30-