My Quakerism and my work for the past 25 years as a hospice nurse have informed and strengthened each other. Each has added to the depth with which I can be faithful to the working of the Spirit in my life. It is from this marriage of profession and conviction that I have learned important lessons about life and death. Working intimately with dying persons has taught me about love, faith, courage, surrender, and transformation. It is clear that the months, weeks, days, and/or minutes of our dying are a sacred time when God is present and at work. Clearly it is in times of extremity that God is most palpable.
So often I have heard from Friends the conviction: “When I know that I’m dying I want to die with dignity. I want to end it my own way so that I don’t suffer and I’m not a burden to anyone.” This is an educated, modern approach to the question of dying but one that my experience tells me is not the way to transcend suffering or to realize what Carl Gustav Jung called the last great opportunity in life to experience self-actualization. In our culture we often see our choices in dying as either an agonizing loss of control and dignity or as a controlled, abbreviated process. I propose a third way. When we can see this time as a sacred opportunity to share what we have learned; move into a final, deep relationship with those we love; and return to the Source, stripped of all that is not essential—then we are living fully into our purpose in life. We are given the opportunity to be the vessel of God’s abundant love.
But, we ask, what of the person who no longer can communicate, due to some illness such as Alzheimer’s disease or stroke or a brain tumor? What is the point of such an existence?
My patient Peter taught me about this question. His story is about faith, religious expression, and the constant, dynamic experience of the dying person and loved ones. A 40-year-old who had been struggling for 11 years with a slowly growing brain tumor, he spent his last two months under hospice care. Now he lay dying, comatose, stripped of all external controls, in a state of total dependence. Some would argue that now would be a perfect time for euthanasia. Peter was still present, stripped of all but his essential self, as unencumbered as an infant. During these last days, Peter required acts of unconditional love, without the expectation of any response from him. In this time of dependence his family expressed a profound experience of community with one another and of transcendent love.
Peter was a successful artist and had said that he felt most connected to God as he was painting. His wife found deep personal satisfaction and a sense of unity with all things as she worked in her flower garden. On the final weekend of Peter’s life, as he lay in a coma, friends came and said their goodbyes. There was story telling, laughter and tears with Claire and the rest of Peter’s family. His neurosurgeon came and spent several hours sitting quietly at the bedside. The family said that they had a clear sense that Peter was listening as well and enjoying the party! They said it felt like a celebration. The love was palpable in his room. There was a feeling of peace and deep caring and support for each other. It was a Covered space.
Peter and his wife Claire had been raised Roman Catholic but in their young adult years had chosen a different expression of their spirituality. Shortly before Peter’s death Claire became uneasy and requested a priest. The priest came and administered the sacrament of the sick. Claire had also hoped to have the sacrament of communion but the priest had not brought the communion wafer with him. Speaking from my Quaker understanding, I suggested to Claire that perhaps we were experiencing the true Holy Communion in this time of being together in the presence of unconditional love. It was this unconditional love that was God’s presence manifest. Claire looked up with shining eyes, understood immediately what I was saying, and responded with a knowing, “Oh, you are right!”
Peter died a short time later with his family and close friends forming a circle of love around his bed. In later months Claire spoke often of the deeply spiritual nature of the last hours of Peter’s life. She found profound meaning in the experience of her husband’s death and was able to share eloquently with others what she had learned. Truly this was a dignified, meaningful death. There had been no last minute “heroic” medical interventions, simply a deep spiritual respect for the passage of this gentle man.
When we know we are dying and can accept this reality we can more fully experience knowing we are in God’s realm. We have the opportunity to see our final days as a time of sacred transformation. We are then able to be intentional and truly present. We may then be given the opportunity to share the insights and love that flow out of this profound experience. Lucy McIver, in her Pendle Hill pamphlet, A Song Of Death, Our Spiritual Birth, speaks eloquently of one’s final days as a time of renewed purpose and learning.
My patient Millie also went on a journey of intention. Millie was a 75-year-old woman with stomach cancer. Her tumor had caused total blockage in her digestive track. She became a hospice patient after she had been hospitalized for about two weeks in a palliative care unit. In an attempt to control her vomiting and nausea, she was given several medications including an intravenous drug that cost about $700 a day. The report from the palliative care unit was that this was the only way that Millie’s nausea could be controlled. She continued to eat with the hope of getting better. She also continued to vomit regularly, and she and her daughter were fearful her of choking. She was suffering terribly. Once Millie and I came to know each other I suggested that there might be another way to manage her symptoms. I explained the disease process to her and her daughter. I told them, in simple terms, that Millie had a blockage so when she ate there was no place for the food to go. Millie asked me several questions about the cause and whether it could be fixed. I answered her simply and honestly. She nodded her head in understanding. It seemed that if she had been given this information earlier she had not been able to process it. Now she fully understood her situation.
At this point I hoped to help Millie find a higher purpose or meaning in the face of her dire situation. She was a devout Catholic. Within the practice of Catholicism, as with most world religions, there is a tradition of making a pilgrimage to a shrine or holy place at some time during one’s life. When a pilgrim is unable to make the physical journey, retreats with fasting and time for prayer are another way to make the spiritual pilgrimage. Recognizing the need for a sense of meaning and comfort in her last days in the face of the physiological dilemma, I suggested that it might be time for her to make such a pilgrimage. “If you stopped eating,” I said, “you would stop vomiting and feel better. If there was no food going into your stomach then your stomach would not have anything to reject and vomiting would stop.” I suggested that this cessation of eating could be a fast, a spiritual exercise that was often practiced over the ages by saints and other holy people. We promised that we would see to it that she would be kept comfortable with medications if there were any pain or other discomfort. I also explained that most people find that due to the metabolic changes that occur during a fast they feel better. I pledged that we would be present and that her family and the hospice team would provide sacred music and join her in prayer and the reading of sacred writings during her pilgrimage. She would be able to continue to have Holy Communion as she desired.
Millie agreed to this plan of care by nodding “yes” with tears in her eyes and a smile on her face. She spent her last few days surrounded by the love of her family in a prayerful environment with sacred music playing at her bedside. Her parish priest visited, as did the spiritual care coordinator from the hospice team. All members of the hospice team freely entered into prayer with her and her family on each visit. She was no longer suffering from nausea and vomiting. Her IV was removed; there was no further need for intravenous medications or injections. Several days later she died peacefully, holding her rosary, with her daughter at her bedside. Her daughter reported that Millie’s death was “so gentle that I didn’t even know that my mother was gone for several minutes.” Later, Millie’s daughter said that the last few days had indeed felt like a sacred pilgrimage. Her mother had seemed very serene, “as if she was surrounded by angels.” She would cherish forever the memory of this time with her mother.
Another crucial area where we may continue to grow and find God’s direction as we are dying is in our relationships with others. My patients have taught me that as one is dying it is possible to address unresolved issues with loved ones, to reconcile, and to let go. In the book Dying Well, Quaker physician Ira Byock describes five tasks of the dying in relation to their loved ones: “Forgive me”; “I forgive you”; “Thank you”; “I love you”; and “Goodbye.” In order to die peacefully a person must let go of all those dear ones left behind, and needs to know that each loved one is ready to let go. Ira Byock’s five tasks are part of the spiritual process that dying persons and their families may intentionally be assisted to do. Simply naming the process, the five tasks, can give a structure to the work being done and can become a road map of the way for both the dying person and loved ones.
During our dying we have one last opportunity to become the person we had hoped to be. As we reflect on our relationships with others we may see times when we have been fearful, unloving, or perhaps selfish or self-seeking. We also often remember the injuries done to us. It is possible as a part of our preparation for death to alter the results of our previous actions. We have the opportunity to ask for forgiveness and to forgive both ourselves and others. We as caregivers and friends may provide the safe spiritual milieu in which this work can be done.
Another patient who came to hospice care had been a nursing home administrator and now found himself dying in a nursing home. William was alone and isolated in his life with no apparent friends or family and had no spiritual home and no theology in which to find comfort. His actions and words were offensive and hurtful to all of the caregivers with whom he now came in contact. The hospice team believed that underneath his behavior was deep-seated fear and shame. We set gentle limits on his behavior, asking him not to say unkind things about the nursing home staff. The team continued to show up cheerfully even when he was overly demanding or critical, and we actually increased our time with him even as we encouraged the use of proper channels of communication for his complaints. The team encouraged him to tell us his story. He first told of all of his successes and the power he had in his work. But after a time, as he developed a trusting relationship with us, he spoke of the mistakes he had made in his life, his regrets about his failed marriage, other failed relationships, and finally, his feelings of failure in relation to his grown children.
William was uncomfortable with expressions of strong emotion. He had been told as a child that it was unmanly to cry and now could speak about the places of the most emotional pain for only very short periods of time. But he kept coming back to his unfinished business.
We explored ways that William might make contact with his estranged children. We encouraged him to tell his children of his feeling for them, his regrets about the past, and his love for them. He did this and his children became more present in his life. They forgave him and in turn asked his forgiveness for their anger. As he grew closer to death a gentleness overcame him. He became appreciative of his care, quick to praise his caregivers, and openly concerned about the lives of all who came to see him. There were no more bigoted remarks. Tears came more easily as he remembered the sweet times of his childhood and the love of his family. He became the person he had always hoped to be, the person he had perhaps once been before developing a self-protective crust. He allowed love back in and reflected it back to his family and all who came in contact with him.
William spoke of a turning point. He said that he had noticed early on that the young woman who came into his room every day to mop the floor, empty the trash, and straighten his few belongings had always been kind and had seemed to go the extra mile. He said, “I realized that there wasn’t really any reason why she needed to be nice to me. She just was.” William had come to hospice care alone and afraid. At the end of his life he was surrounded by people who accepted him as he was, vulnerable and imperfect. He was able with this unconditional love to face his fears, resentments, disappointments, and feelings of failure. He was then able to forgive, feel forgiveness, love and be loved, and die peacefully with his family at his bedside.
As Quakers we experience the sacraments in our lives as living processes. We experience the sacrament of bringing new children into the world and welcoming them into a community of love. We experience the covenant commitment of two people in the presence of God in marriage as a sacrament. My work with dying persons has taught me experientially that the transition out of this life is also a sacred time. My hope is that we as Friends may be fully, sacramentally present at our own deaths, living truthful lives until the end. I ask myself and offer to other Friends these queries:
- How intentional is my effort to connect to the Source? What am I doing now to keep my connection to God alive and vibrant? What might be blocking me from the Light of the Spirit and how might I remove any impediments?
- Are there broken places in my relationships with others that I can mend? Are there those I need to forgive or seek forgiveness from? Am I freely expressing love both in actions and in words in my life?
- Am I living fully into God’s plan for me? Do I see a clear purpose to my life? Is my intention to live according to God’s will?
The names of the patients and family members have been changed to protect their privacy.