BY: LINDA F. PIOTROWSKI, MTS, BCC
What is a good death? It is both exceedingly complex and stunningly simple. It can be both individually and commonly defined. We all live with an awareness of death and the many facets of life that lead us to it. But feeling uncomfortable talking about death does not support anyone who needs to express how they hope they might die. Chaplains can be the catalyst in helping individuals and their families prepare for a good death.
To discuss the characteristics or qualities of a good death, 16 members of the National Association of Catholic Chaplains, along with the organization's director, gathered via conference call in July 2017 to discuss what a good death is and the role of spiritual care in preparing for and supporting it. Part of the discussion centered on a 2016 literature survey published in the American Journal of Geriatric Psychiatry in which the authors reviewed English-language, peer-reviewed studies that indicated how patients, family members and health care providers thought of a good death. Among the studies, 10 common themes emerged:
- Preferences for a specific dying process
- Pain-free status
- Religiosity and spirituality
- Emotional well-being
- Life completion
- Treatment preferences
- Quality of life
- Relationship with health care providers
In their conclusion, the authors encouraged dialogue among all stakeholders — patient, family and caretakers — to ensure they are heeding "the most critical viewpoint — the patient's."1 Dilip Jeste, MD, one of the article's authors, told Deborah Newborn, a reporter for the Los Angeles Times, that although the researchers found most important elements of a good death differ depending on whom you ask, 100 percent of patients and family members, as well as 94 percent of health care workers, said "preferences for the dying process" — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a good death.
The literature survey also found widespread agreement that being pain-free is an important component of successful dying. Ninety percent of family members, 85 percent of patients and 83 percent of health care providers mentioned it.
Spirituality and religious support, which includes meeting with clergy and receiving religious or spiritual comfort, appeared to be more important to those who were dying than to family members or health care workers. The theme was brought up by 65 percent of patients, compared with 59 percent of health care workers and 50 percent of family members. Family members tended to be more concerned with the idea of dignity at the end of life — understood as being respected as an individual and having independence — than either health care workers or patients were. Dignity was brought up by 80 percent of family members, compared with 61 percent of health care workers and 55 percent of patients. Similarly, having a good quality of life — that is, living as normally as possible and believing life is worth living, even at the end — was listed as important by 70 percent of family members, compared with 35 percent of patients and 22 percent of health care workers.
"For a dying person, the concerns seem to be more existential and psychological and less physical," said Jeste, who is director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine.2
THEMES AND ROLES
During their conference call, the Catholic chaplains, among whom were palliative care and hospice chaplains from across the United States, talked about how defining a good death is something unique to those experiencing the death. A chaplain's primary task, they concluded, is to facilitate conversation and awareness of how the patient envisions his or her good death.
They also agreed that how death happens may not follow anyone's hopes. A chaplain's role is to assist patients, their loved ones and health care professionals in finding peace with however death is occurring.
One of the most important things a chaplain does is a spiritual assessment of the patient, so long as the patient is verbal and capable of expressing his or her wishes. Alongside that, they assess the needs of the significant others in the patient's life.
After assessing for both needs and resources, the chaplain tries to make it possible for the patient and loved ones to have their needs met. Chaplains are aware throughout this process that family members and significant others are already beginning to grieve. The quality of the death they witness can hinder or help in the grieving process.
Chaplains strive to convey a sense of God's compassionate presence and witness to the suffering and struggle. They do this when they:
- Listen, comfort, explore and follow the patient's values and wishes as much as possible
- Provide sacraments and rituals, pray and read Scripture or other sacred texts appropriate to the situation and the patient's religious or spiritual affiliation
- Assist patients in achieving their desires for things meaningful to them, such as seeing a beloved pet, going outside to breathe fresh air, having grandchildren present one more time, having a favorite food or drink with a spouse or partner
- Support with a listening presence, spiritual dialogue or other means that will help patients to access their own spiritual resources. Enable the patient to express gratitude or joy, give or ask for forgiveness and articulate a sense of completion
- Coordinate and communicate with family, friends and health care team members
- Intercede with administration when family/personal/cultural/religious/spiritual desires are outside what is considered the norm
The belief that there are four and possibly five things that can contribute to a good death is generally well accepted in palliative and hospice ministry. It should be noted that some of these are accomplished in the course of a person's lifetime. Others might not have been, and they are a necessary part of life completion.
In his book, The Four Things That Matter Most: A Book about Living, Ira Byock, MD, spells those out as, Please forgive me. I forgive you. Thank you. I love you.3
"You know, the doors of perception are thrown open at times of birth and at times of death. For me, that's the sacred," Byock told Krista Tippett, host of the radio show "On Being," in 2013. "The sacred isn't a concept, it's not a philosophy. It's this visceral experience of rightness in the moment, this unbelievable sense of privilege. Sitting with somebody at their bedside, standing in back of a room with a family surrounding someone who they love who's dying, at the moment, there is this rightness, this sense of resolution of all contradiction that I think we human beings somehow labeled as sacred. You know, this experience of being infinitesimal and yet being infinite, utterly vulnerable and yet unshakably confident."4
Keeping all of this in mind, how do professional chaplains participate in helping people experience a good death? The chaplain can, through invitation and asking questions, create space for patients to explore their life story, consider how their lives were lived in love of God and love of neighbor, and how there might be unfinished relationship work they want to do.
During the NACC conference call, chaplains shared similar experiences and poignant moments.
Michele recounted: "My first death was at a skilled nursing facility when the family was surrounding the patient. Since I was new to the situation, they began telling me many stories about this wonderful man. As we laughed and cried, he slipped away. His death was peaceful and nonthreatening to the family. They ‘loved him home' through their good stories and memories of a life well-lived. In their stories, he was able to hear love and was assured his adult children would take good care of their mother, his wife of many years."
From Lisa: "Last wishes a patient has should be honored, if at all possible. A gentleman in our hospice wanted nothing more than to marry the love of his life. We made arrangements for the marriage to take place."
Anne added: "One patient's deepest desire was to be able to spend time with Callie, his cat. By working with the appropriate people in administration, we were able to make that happen. Equally important to this patient was assisting him in making arrangements for aftercare for his cat."
Matt spoke of a patient's moment of "rallying in the intensive care unit. The patient had been nonresponsive. Family was gathered. At one point, he woke up and looked around the room. I spoke to him, ‘You are surrounded by family and those who love you.' He asked to sit up. His eyes were open. He pointed to the group and said some words of blessing or remembrance for each person he saw. As a group, we recited Psalm 23. The patient lowered his head, closed his eyes and died, reconnected with those he loved."
INITIATE THE DISCUSSION
At times it is extremely difficult to see how deaths are "good": The young father killed in a car accident, the mother of three small children who dies of cancer, the beloved medical school professor, the baby shaken to death, the man crushed under his truck while fixing the brakes, the teenage girl who dies of cystic fibrosis, the murdered brother.
In such moments, the chaplain is called upon to assist the bereaved in gaining access to their feelings. Tacitly and sometimes verbally, chaplains give "permission" for others to express feelings in whatever way is appropriate for them. Perhaps in these times more than any, the chaplain stands as a sign of the love of God incarnated and witnesses to God's non-abandonment of us in pain, uncertainty and situations so beyond understanding that there are no words to explain why.
One of the most difficult things we do as humans is listen to the voice of the suffering. What the chaplain knows and tries never to forget is that dying, death and grief are not over there while we stand over here. We, too, are the dying. We all are moving toward that day. Death sits near each one of us, at every turn, and sometimes we are too aware — but mostly we push it away. Sometimes it looks exactly like life. The colors of the sky are the same when the sun rises as when it disappears. "Dying isn't the end of the world."5
We must allow the relationships we develop in the course of providing care to inform us, as well as challenge us, to initiate discussion around this all-important reality within our lives.
Fr. Myles Sheehan, SJ, MD, further challenged Catholic leaders, saying, "We can really prove what it means to be, as the pope has said, ‘a civilization of love within a culture of death.'"
Catholic leaders need to lay down the law about standards our church has set for care at the end of life, just we lay down the law about not allowing abortions or sterilizations in our hospitals. I would like to see that same intensity applied to the church teaching that pain is to be treated, and people are not to receive excessive and burdensome treatments. Bishops should say, "I will take very seriously cases of untreated pain as a violation of Catholic ethical guidelines. Dying in untreated pain is an offense against God and against humanity."6
We chaplains hope that this article will invite conversation and promote education about the many preparations to be made for a good death. Along with other health care providers, chaplains must be the catalysts and guides.
LINDA F. PIOTROWSKI ministered as a chaplain for 25 years, 10 of which as the pastoral care coordinator and chaplain for the palliative care service at Dartmouth-Hitchcock Medical Center and the Norris Cotton Cancer Center in Lebanon, New Hampshire. She is now retired.
- Emily A. Meier et al., "Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue," American Journal of Geriatric Psychiatry 24, no. 4 (April 2016): 261-71 www.ajgponline.org/article/S1064-7481(16)00138-X/ppt.
- Deborah Netburn, "What Does It Mean to Have a ‘Good Death'?" Los Angeles Times April 1, 2016. www.latimes.com/science/sciencenow/la-sci-sn-a-good-death-20160401-story.html.
- Ira Byock, The Four Things That Matter Most: A Book about Living (New York: Atria Books, 2014).
- Krista Tippett, "Contemplating Morality," On Being radio program, transcript of Nov. 7, 2013, episode. https://onbeing.org/programs/ira-byock-contemplating-mortality/.
- Nina Riggs, The Bright Hour: A Memoir of Living and Dying (New York: Simon & Schuster, 2017).
- U.S. Catholic, "Death — It's a Part of Life," U.S. Catholic interview with Myles Sheehan (June 16, 2008). www.uscatholic.org/culture/ethic-life/2008/06/myles-sheehan-interview.
Kenneth J. Doka and Amy S. Tucci, eds., Living with Grief: Spirituality and End-of-Life Care
(Washington, D.C.: Hospice Foundation of America, 2011).
Stephen B. Roberts, ed., Professional Spiritual & Pastoral Care; A Practical Clergy and Chaplain's Handbook. (Woodstock: SkyLight Paths Publishing, 2012).
COMPONENTS OF DYING WELL
Catholics and Catholic chaplains are well aware of the sacred dimension in health care. They keep in mind the spirituality and faith traditions of each person they seek to serve. They also are solidly grounded in the Catholic Church's teachings related to a good death. One authority they can look to is Fr. Myles Sheehan, SJ, MD, a retired geriatrician and former associate dean and associate professor of medicine at Loyola University Chicago Stritch School of Medicine. Fr. Sheehan now serves the Jesuit provinces of the United States, facilitating conversations among Jesuits, their families and their superiors around dying well.
"Dying well has at least three essential components," he wrote in an article for America magazine. "First, medical care needs to be put in proper perspective. No one gets out of this life alive. The key players, however, are the person who is dying, those who love him and God. Second, dying well, for people of faith who are Catholic, means sensitivity to the moral tradition of the church. Practically speaking, when one is facing a terminal illness, the wisdom of the church is that one is not obliged to pursue treatments that are painful, difficult to bear or simply prolong dying. Third, and most important, dying well means living well with God.
"Dying is not easy. There will always be existential distress and suffering for anyone conscious of decline and the loss of the good things of life. Dying well is not simply a matter of getting our affairs in order and making sure that our health care proxy is informed that we are in the emergency room. It is the time we meet God in a definitive way.
"How does one live spiritually in the hope of dying well?
"For Catholics, that question has a million answers, and it recalls the question of the rich young man to Jesus: "What must I do, Master, to inherit eternal life?
"At its core, a happy death comes at the end of a life in which a person has been dedicated to love of God and love of neighbor. Christians believe death is a time for birth into eternal life with God. Making choices from the perspective of the deathbed wonderfully focuses the distinction between what is essential and good and what is trivial and evil. St. Ignatius of Loyola, in his Spiritual Exercises, urges the person making the exercises to choose a state in life or make a particular decision by a variety of methods. One is to consider what one's choices will look like ‘as if I were at the point of death.'
"The Imitation of Christ … looks at the Christian's life through the lens of mortality: ‘Every action of yours, every thought, should be those of one who expects to die before the day is out. Death would have no great terrors for you if you had a quiet conscience.... Then why not keep clear of sin instead of running away from your death? If you are not fit to face death today, it is very unlikely you will be tomorrow.'"1
- Myles N. Sheehan, "On Dying Well," America 183, no. 3 (July 29, 2000). www.americamagazine.org/issue/305/article/dying-well.
Copyright © 2017 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.