I had the privilege of being at my mother’s bedside when she died. As a seasoned hospital chaplain I have come to appreciate this opportunity to experience presence and transcendence as a holy moment, and it was especially important to me to share this with the woman who meant so much to me. Her last weeks she spent in agony; the cancer diagnosis came too late, and was too widespread, for any treatment other than comfort care. And that was where the family dynamics were complicated. Though I had spent much time with families making difficult decisions about end-of-life care, when it was so personal, I was given little voice. My father and brother made the decisions, and that meant a prolonged and painful period for my mother as her body gave out. The family decided to keep her alive to receive a visit from her new great-grandchild, which gave her joy though at personal cost. When hospice was finally brought in, it was too late for much benefit. Instead of lasting a few days, my mother continued in her nursing home bed for over a month. Her faith, however, remained strong, and we knew where she was headed; after all, she had raised me to believe in the promises of Christ.
Death is inevitable, and as people who believe in the resurrection, we know death does not have the final word. My comfort when dealing with dying comes from Romans 8:37-39: “For I am sure that neither death, nor life, nor angels, nor principalities, nor things present nor things to come . . . nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.” Still, even those who have a deep and active Christian faith find coping with the death of a loved one a powerful test in what they think, feel and believe. This is made more complicated by what is now available in modern healthcare.
Family members and healthcare providers look for guidance in the dying patient’s advance directives, and if that is not available, in remembering discussions and actions taken in the past. And even when the patient is alert, family pressures and modes of decision-making may take control from the patient. Sometimes the resistance to a final goodbye makes a family member’s pain more powerful than the dying person’s pain. And sometimes the options for prolonging life interfere with what that life is like for the one losing it.
For example, most people offer food when they want to do something comforting. This is problematic for a dying person who cannot eat and may be hurt physically and emotionally if trying to please the kind gesture. When family asked Mom if she would like a milkshake, she nodded yes, but couldn’t even swallow. It is a good idea to separate good intentions from the reality of the patient’s abilities. Peaceful presence is often the best comfort for the dying person and may include prayer.
These concerns are best discussed among all who are closely involved. This may mean seeking assistance from an ethics committee and spiritual leadership, though approaches from faith-based, well-meaning, and maybe uninformed religious perspectives will vary. A helpful book is Faithful Living, Faithful Dying, Anglican Reflections on End of Life Care. Led by ethicist Cynthia B. Cohen, the book provides detailed analysis of the difficult decisions and options regarding care and coping at the end of life from a faith perspective.
Issues of guilt for what might have been, what is going on around the dying person, and how family will cope with the history of their actions after the loved one’s death need to be sensitively addressed. Professional chaplains and spiritual directors can help both individually and with families. Often processing the death of a loved one needs time and the support of a less directly involved friend. Each person explores grief uniquely; we hold in common the hope in our faith. +
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