By Austine Duru
“When cure is off the table, where do we turn for healing?” This was the question posed by Dr. Carol Taylor during a plenary speech at the 2016 NACC national conference in Chicago. Taylor, a senior clinical scholar in the Kennedy Institute of Ethics at Georgetown University and a professor of medicine and nursing, suggests that chaplains may have the key to inspiring and enabling hope in the seriously ill and dying. She affirmed that “remaining hopeful in a global community marred by war, increasing attacks of violence, and profound inequities that leave millions dying of hunger, thirst, and treatable diseases is at best a challenge.” The session explored why hope matters and strategies for enabling it.
Dr. Taylor framed her presentation around the message of Pope Francis in Church of Mercy, where he writes, “Spreading the Gospel means that we are the first to proclaim and live the reconciliation, forgiveness, peace, unity, and love that the Holy Spirit gives us.”
But against the backdrop of the harsh economic and political climate, “how can we be that authentic, hope-filled presence?” she asked. She pointed out that based on a 2014 Institute of Medicine report, dying in America is harder than it has to be. Part of the reason is that the American healthcare system is poorly equipped to care for patients at the end of life. Another factor is that major gaps still exist in the effort to improve access to hospice and palliative care, such as the shortage of palliative care doctors, lack of honest conversation among providers, and inadequate support for ill and dying patients. All of this, she says, makes the work of frontline healthcare staff, including chaplains, much more challenging.
It is unsettling to learn that research suggests that people are not coping very well at the end of life. Increased social isolation has been found to be one of the most lethal problems in long-term care, Taylor said, and people “keep waiting for the pill that make life less lonely.” One in three seniors in the United States now suffers from dementia.
Taylor discussed some very public figures who have recently engaged media attention and perhaps shifted public opinions and policies on end-of-life issues. Ezekiel Emanuel, Brittany Maynard, Lauren Hill, Oliver Sacks, and Paul Kalanithi all have something to teach us.
An interesting contrast is the story of Brittany Maynard, 29, who used Oregon’s death with dignity/assisted suicide law, versus Lauren Hill, 19, who was determined to live fully and died with family, friends, and community around her. Both women captured our imaginations, both were dying from brain cancer, but they embraced radically different paths. “Both taught us to cherish life — that nothing is greater than the human spirit.”
Taylor continued, “How do we play midwife to the folks for whom that inner spark is under layers of darkness? As the sands burn our feet as we enter into the holy ground of individuals and families, what do they get when they get each of us?” She told her audience, “The world needs you. Recognize your role at the table. We need your help in learning how to do this better.”
She sees chaplains as messengers of hope in a broken world, and walked participants through the six circles of hope following a challenging diagnosis: Hope for sudden and long remission of disease; hope for pain-free existence; hope for resolution of interpersonal relationships; hope for self-forgiveness; hope to be remembered well; hope to meet our God who know us best. Questions of value and meaning are very significant in the healing process, she said, and chaplains need to understand the kind of presence or companioning that engenders hope. When age, infirmity, and serious illness threaten our very sense of self and continued existence, despair is a real option. With assisted suicide now legal in some states, more are likely to choose this option. “If it’s true that each and every human being lives by hope, each and every human being expects hope, is hoping for hope (Pope Benedict) — then we as spiritual caregivers need to be skilled in cultivating hope.”
Taylor noted, “If spirituality is going to mean anything, it needs to be at this deep, profound level — where we are willing to engage the questions about meaning and worth, so that we can be witnesses to forgiveness, to reconciliation, to patience, to a God who never turns his gaze away from us.”
She concluded by challenging chaplains to act with courage, take their place at the table, find ways to influence those around them, seek what needs to change, and find opportunities to start crucial conversations. But above all, she urged them to channel God’s healing presence in a world plagued by loneliness, hopelessness, and pain.
Austine Duru, BCC, is the regional director of mission, ethics, and pastoral care at SSM Health in Madison, WI.
