When Kei Okada, a spiritual care counselor, met recently with Alma Spitz, an 83-year-old New Yorker with end-stage liver cancer, she had been eating better and voiced what many of us might think of as denial. "I used to be quite a walker," she said. "When I'm better, I'll get out on my walks again."
She knows all her medical diagnoses, knows her time is limited, Kei says. Yet she hopes. She hopes, and yet she knows.
This, explains Kei, is not uncommon in the dying process -- something known as "middle knowledge," a state between knowing and not knowing. "When a person is feeling stronger than last week or last month, they might say, 'Maybe, just maybe, I will be better again. Maybe I can travel, go on walks...'" says Kei, a Board Certified Chaplain who is one of my colleagues at Visiting Nurse Service of New York Hospice and Palliative Care.
"The person can say, 'I have a terminal condition' -- that knowledge is in the head," he explains. "But the heart says, 'I want to live a little longer.'"
Denial in all its complexity is a full-fledged right of each person who dies, and their families. Rather than being the limiting or destructive condition it can be in other circumstances, denial can be a useful coping mechanism at end of life. It can work against depression and anxiety, allow someone to process overwhelming information in their own time, and create a safe space for families as they transition through the grieving process.
Denial as a common response to dying was introduced into the conversation by Elisabeth Kubler-Ross in her iconic book, On Death and Dying, which details her now-famous five stages of grief. Patients who are in denial, she writes, "can consider the possibility of death for a while but then have to put this consideration aside in order to pursue life. [Denial] functions as a buffer... allows the patient to collect himself and, with time, mobilize other, less radical defenses."
Brenda Mamber, a licensed clinical social worker with more than 30 years experience in end-of-life care, recently visited an elderly bed-bound man being tended in his final weeks by his wife. Both Holocaust survivors, the couple had deeply ingrained habits of projecting strength rather than vulnerability and of summoning denial to cope with extreme stress and trauma. "She never acknowledged how sick he was," says Brenda. "She kept saying, 'He's a fighter. If I feed him, he'll get stronger.'" At the same time, Brenda came to learn that both husband and wife had their end-of-life plans in order, including advance directives, an updated will, and detailed funeral arrangements.
"She doesn't need to talk about it," says Brenda. "Her defenses are very important to her, and we need to be sensitive to them."
More than once, Brenda has been pulled aside at the bedside of an older parent and told by an adult child, "Don't tell her she's dying." Later, when the child or children leave the room, the parent says to Brenda, "You know I'm dying, right?" Here, there is a mutual protective instinct at work among family members.
"Denial gets a bad rap as dysfunctional," says Brenda. "But actually it can be very functional in protecting a person from an emotional assault of information they might not otherwise be able to handle."
More often than not, denial serves and supports individuals and their families as they integrate the difficult business of dying into their lives. But now and then, we meet someone so fixed in their denial that it indeed stands in the way of their dying how and where they want.
Brenda recalls a young mother who so adamantly refused to consider her life-limiting condition that she made no plans for -- and brooked no discussion about -- her small children after her death. "She refused to engage around end-of-life planning because it wasn't going to happen to her," Brenda says. "Her children didn't get the opportunity for closure and were sure to be thrown into a crisis when she did die. I remember her so clearly because this depth of denial is rare."
More common is the patient who denies that he or she needs more help around the house, doesn't want to be a burden, and ends up dying in the hospital rather than at home because the level of care is simply not there. Here, an honest discussion and advance planning can make all the difference. A hospice worker might ask permission to speak to an adult child, see if the child can arrange shifts of care from family members, a religious community if appropriate, friends and extended family. "The granddaughter may welcome flying in from California to take care of Grandmother if the granddaughter knows time is short," notes Richard Dundy, M.D., Regional Medical Director for VNSNY Hospice and Palliative Care.
Strategies: On Coping and Communication
Care providers use several good protocols for discussing a life-limiting diagnosis with patients, including Robert Buckman's book How to Break Bad News and a care team protocol called SPIKES (Setting, Perception, Invitation, Knowledge, Emotions and Strategy). Those of us in end-of-life care build on these, our training and our experience to help people meet their final goals -- even in the presence of denial. Our aim is not to tear down the edifice of denial necessary to emotional well-being, but, rather, to attend to issues that, if unaddressed, could make the dying and bereavement processes all the more difficult.
With someone whose time is limited, we often begin the conversation by asking questions, gauging what a patient or family member knows about the diagnosis and prognosis, as well as their appetite for more information. Clinicians will often ask, "Do you want to hear more, or should we stop here for now?"
Throughout, we recognize that there is no right way to die and no right way to talk about death. "We must learn the language of the patient," Kei says. "If we pound on them with the language of 'should' or 'must,' it takes away their power -- and they are feeling so powerless already."
Respecting the Life Cycle
Occasionally, patients referred to hospice by their doctor refuse to think or talk about dying and ultimately refuse all end-of-life services. "When the apartment door closes, the only solution is increased community education," Kei wisely concludes. "We need to teach people, from elementary school on, how to see life as a whole. Children study the life cycle of butterflies, starting with caterpillars. They should also be taught how we as humans live and die."
There's no denying that.