When I lived in Iowa, I knew Jack and Leslie, a married couple who came to a workshop on end-of-life issues held in West Des Moines and led by Aging With Dignity President Paul Malley. That day they both decided to adopt Five Wishes as their advance directive (Paul can be very persuasive!). Later, when Leslie’s mother Irene became ill, Leslie had her fill out Five Wishes as well. The conversation they had as they walked through each of the wishes was, Leslie later told me, among the most meaningful they had ever had together. As Irene’s health declined, the family was able to face the process of dying in an open and loving way. In particular, they were able to make sure Irene was surrounded by all the sights and smells and touches and voices she said brought her comfort, which included a photograph of her deceased husband Lou, her favorite scented candle, her children holding her hand, and the sound of the rosary being prayed next to her even when she could no longer join in. After Irene died, Leslie said that the greatest gift she received was the gift of peace. She knew that she had given her mother what she wanted most at the end of life.
Aging with Dignity is committed to cultivating a “culture of hope” that helps people identify their personal “hierarchy of goods”, i.e., deciding what matters most, what may have to be given up, what remains to the very end of life and how best to protect what remains. Building such a culture requires tools that help identify where things fall in our “hierarchy,” promote proactive planning and draw on the many resources available. A culture of hope requires setting achievable goals that will sustain hope, and is particularly attentive to those who are most vulnerable to despair. For example, those who lack access to important resources or who lack information necessary to make informed decisions. A culture of hope locates and places all available resources – medical, legal, social or spiritual – within reach, resisting the inroads of a culture of despair that sidelines the meaning and goodness in life that remains, even in tragic circumstances, to the very end. In the name of autonomy, the culture of despair renounces faith in the bonds of love, and hope’s audacious assertion that “as long as there is life, there is hope.”
In a culture of hope, there are bedrock beliefs about the goodness and sanctity of human life that provide a sense of stability, trust and meaning in the face of adversity and loss. In such a culture, these beliefs become presuppositions that give those who face vulnerability and fear a place of security in which they can rest secure knowing those around them are unwaveringly dedicated to building around them a hopeful “home” of care and support and compassion. In a culture of despair, where choosing death becomes the fundamental option for facing vulnerability and fear, that home of security is demolished.
But if these presuppositions of hope are to sustain the sick and dying in trying times, they must be identified and owned by each of us. If we wish to be beneficiaries of this culture, we must prepare ourselves to be a part of it. We must make certain family and friends, our community of faith and medical providers know what we value most in life. Only by doing that can others offer a network of support that humanizes our increasingly fragile world and sustains our hope. If the time comes when we can no longer speak for ourselves, we will have to rely on others to carry out our wishes and make certain we remain in our hope-filled “home.” Those who love us or care for us can only honor our choices if we make them known, and we can only make our wishes known if we take time and effort think seriously about what we wish to accompany us to the very end.
Tom Neal, PhD is Academic Dean and professor of Spiritual Theology at Notre Dame Seminary in New Orleans, Louisiana and author of the popular blog Neal Obstat.
Read more from:
Tom Neal PhD