As Seigan Glassing walked down the sterile, white hospital corridor, he thought of a poem written by well-known Zen master Kozan Ichikyo shortly before his death.
Empty handed I entered
Barefoot I leave it
My coming, my going --
Two simple happenings
That got entangled.
Seigan paused outside one of the identical doors of the neurological unit, marked only with a number. He mulled over the words of the poem, letting them mingle, listening to their rhythm, refocusing. He was tired but not exhausted, nearing the end of his hospital shift. He straightened his Buddhist monk uniform and ran his hand over his clean-shaven head before adjusting his glasses.
As he entered the room he met a scent of flowers. The night lights of the city spilled in through the window and 57-year-old Cleo (as she was named in a transcript), her head heavily bandaged, held out her hand to greet him. Her long, dark hair was streaked with grey and she lay propped up in her hospital bed.
"You're the Buddhist chaplain aren't you? I've been waiting for you," she said. "Please sit down. Do you have some time for me?"
"Of course," Seigan said, taking a seat next to her. "Tell me how you're doing, how you're feeling right now."
What the end-of-life process quickly highlights, Seigan says, is that a patient's experience of pain can come in many forms.
Cleo was admitted to the hospital after suffering a major seizure one day while doing her laundry. A brain biopsy a few weeks later revealed a glioblastoma, an aggressive and malignant form of brain cancer. The surgeon laid out the prognosis, cut and dried: she had less than three months to live. He urged her to go ahead with surgery and a chemotherapy follow-up. It would give her perhaps an extra nine months to a year, he said, but ultimately the cancer was terminal. Cleo explained how, despite her initial reaction to let nature take its course, she felt she should go ahead with the surgery for the sake of her 87-year-old mother, who was devastated by the diagnosis.
Seigan listened carefully.
"Can I challenge you for a little bit?" he asked. "What do you really want?"
It's the question that is slowly but steadily refocusing end of life care. As a member of the interdisciplinary palliative care team at one of New York's major teaching hospitals, Seigan is part of a growing push to make health care more holistic -- treating the whole person rather than just focusing on the disease. Trained as a chaplain through the New York Zen Center for Contemplative Care (NYZCCC), he works to champion patients' quality of life and help them prioritize their personal goals and values.
"I encounter people at a vulnerable time, a time of crisis," Seigan explained. "I'm there to walk them through this journey in some way -- not fix them so much as to listen, to offer or reflect back to them their strengths, fears, their own existential support systems and what gives them meaning in their life."
The message that the palliative care team is trying to convey to the world of aggressive medical intervention is a straightforward one: healing people doesn't necessarily mean saving lives. "More and more we are refusing to acknowledge important aspects of what it is to be human, including death," Seigan points out. "People want to talk, they want to be heard and understood. But a lot of the time what we see in health care is a breakdown of communication."
Part of the problem, palliative care nurse practitioner Cathy Mondonedo argues, is that doctors have come to see death as failure, prioritizing extension of life over quality and comfort -- a mentality that is then projected onto patients and their families. "Its not that physicians aren't well-meaning, they just don't know how to approach this topic and don't want to look like they are giving up, but aggressive treatment is not always the best option," she said. "It's important that people are given realistic expectations about their illness so that they have time to have these difficult conversations and make plans for the future."
But confronting death is not easy. The Journal of Palliative Medicine reported in 2010 that only around 20 percent of terminally ill elderly patients had their end-of-life wishes documented in their medical records. Much of the painful end-of-life decision-making is then shifted onto family members, who are frequently left feeling isolated and pressured into pursuing invasive treatments. As a result, despite the majority of Americans voicing the desire to die in comfort at home, CAPC statistics show that around 80 percent of deaths still occur in hospitals and intensive care units.
Many doctors fail to call in the palliative care team when patients are terminally ill, fearing that it looks as though they should expect the worst. Yet the resounding response from patients and families who have experienced the interdisciplinary benefits of palliative care, within a hospital or at home via hospice, was that they wished they had known about it sooner.
Terminally ill patients who received early palliative care experienced less depression, had a better quality of life, and survived longer than those who were given "life prolonging" treatments or even just standard care.
When she was diagnosed with pancreatic cancer, Ruth, 83, said it was like receiving a knockout punch. "That blew my mind," she remembered. After the initial shock subsided there was a terrible sense of déjà vu, Ruth's son had died of the same disease five years earlier.
The sun streamed into the front room of their house in the Rockaways as Ruth's husband Joel* helped her to take her pain medication, reading from a neatly typed schedule. She would be allowed another dose in a few hours, he told her. The coffee table was piled high with photo albums, and a bowl of fresh fruit stood next to a huge bouquet of slightly wilting flowers, sent by their son's partner for the anniversary of what would have been his 55th birthday. "I don't want to throw them out," said Ruth with a smile.
She readjusted her slight frame in the large, yellow armchair, her patent, silver shoes catching the sunlight. "There comes a time when you know you're not going to beat nature," she said. "But I want to be comfortable and I don't want to be in pain, that's all I'm asking for. When I have no pain I can get up and get dressed. I don't have to worry." She paused, staring out of the large, white-framed window, "I just want to stay as far away from the hospital as possible," she added.
With the help of the palliative care team, managing the physical pain, nausea, and fatigue has become the focus of Ruth's treatment. Her specialized prescriptions are customized and altered according to her developing symptoms, giving her the freedom to continue with her daily routine as far down the line as possible. "Most doctors can only diagnose and then prescribe, they don't have the time or the expertise to work with you on the trial and error. Palliative care is a wonderful thing." She looked down at her folded hands for a moment. "My son didn't have any of this. He was in terrible pain all the time."