What we want at the end

The Rev. Rosemary Lloyd’s work has always brought her close to the subjects of aging, illness, and dying. As a nurse and hospice volunteer, as a UU minister, and now as an advisor to faith communities for a Boston-based nonprofit called the Conversation Project, Lloyd has helped people face the end of life with compassion and honesty.

Lloyd says her focus on end-of-life issues is rooted in home and family. She grew up in a close-knit Italian-American household that included siblings, parents, and grandparents. At the end of one visit home, during her twenties, she was overcome with sorrow at leaving her grandfather, who was then in his eighties. “I said to him, ‘Grandpa, I’m afraid that when I leave here, I may not see you again and it makes me sad.’ And he said, ‘Rosemary, I’m an old man. I’ve had a good life, and I’m not afraid to die. So, if I don’t see you, then . . . I’ll see you.’ He said it just like that, with a little humor. ‘If I don’t see you, then I’ll see you.’ That was his theology.”

Lloyd and her grandfather exchanged those words often, and on the night he died, fifteen years later, they were a comfort and a guide. She happened to be home, heard him calling from the next room, and went to him. “I knew from my nursing [background] that he was having a cardiac event. Something was going wrong with his heart.”

She woke her mother, who was also a nurse, and then her father. “I said, ‘Dad, listen, wake up. Grandpa’s dying. Come and be with him,’ and he said, ‘Call 911!’ But I [explained to him] what they would have to do, and that you couldn’t stop them once they started.”

Lloyd knew that emergency resuscitation was unlikely to save a fragile, 96-year-old man, and that it wasn’t what he wanted. To ease her father’s fear and anguish, she reminded him of his father’s words: “I’ve lived a good life, and I’m not afraid to die.” Instead of calling 911, the family gathered at the bedside. Later that night, Lloyd’s grandfather died peacefully with his family at his side.

Many of us hope for such an ending, for ourselves and for the people we love. I want to go in my sleep, or I hope I’m surrounded by family. The pictures vary: Under the stars. Straight into God’s arms. Singing! In a blaze of glory. (That last one referred not to heavenly rapture, but to my mother’s hope that her father would die with his running shoes laced, on the track at the Senior Olympics. He died at 91, fit enough for walks but too unraveled by Alzheimer’s Disease to remember his way home.)

Katy Butler, author of the memoir Knocking on Heaven’s Door, reports that while “[t]hree quarters of Americans want to die at home, as their ancestors did, . . . only a quarter of the elderly currently do.” Butler notes that many of us express concerns about the overreach of contemporary medicine, yet two-fifths of American deaths take place in the hospital, and a full fifth take place in intensive care.

The distance between what we want at the end of life and what many of us experience is all the more puzzling when we think we have done the work—the paperwork—of executing wills, medical directives, and health care proxies. Yet for many individuals and families, these documents are insufficient guides through the unpredictable, often incremental processes of aging, illness, and dying. The best way to close this distance, says Lloyd, is through open and honest conversations.

“There is a dramatic amount of care delivered at the end of life that’s futile, painful, invasive, and very expensive,” she says. “In many cases, it is care that individuals might forgo if given a chance to consider their options.”

As Elaine McArdle has chronicled (“Choice at the End,” Spring 2016), some important aspects of end-of-life care are familiar in Unitarian Universalist communities. UUs have been at the vanguard of the American death-with-dignity movement, developing legislation in Oregon that legalized physician-assisted dying for the terminally ill in 1997. A 1978 General Assembly Resolution affirmed our support of hospice care, which was then a relatively new phenomenon. In our congregations, one can find workshops on estate planning, creating a living will, and even resources for green burial. Not a few of us display a proud pragmatism in the way we live our lives, yet when it comes to talking openly and honestly about aging and death, says the Rev. Tom Owen-Towle, “We’ve got work to do.”

Now approaching his 77th birthday, Owen-Towle is the author of Growing All the Way to Our Grave: Conscious Aging and Mindful Dying  (2018). He speaks with energy and joy about his pastoral work, offering personal reflections on aging and dying: “It’s not morbid at all. It enables me to live with more faithfulness and grit and grace. I pay more attention to my living, now, than I ever did earlier in my life.” In his view, end-of-life concerns should be seen as part of the prophetic witness of UU congregations: “We’re grappling with many different prophetic issues—gun control and poverty and immigration reform and gender fluidity and dismantling patriarchy. We need to talk about aging and dying among all those other subjects.”

Owen-Towle’s book joins other titles by UU clergy, including the Rev. Bruce Marshall’s In Later Years (2018) and the late Rev. Nancy Shaffer’s While Still There Is Light (2013), in the growing genre of reflections on aging and end-of-life-care, including the immensely popular Being Mortal by physician Atul Gawande. These books invite us into a deeper conversation about dying that ventures beyond documented plans and preferences into the terrain of values and fears, of love and letting go.

Lloyd calls this process “sacred dying.” She believes that through brave conversations, we can increase our odds of having the kind of deaths we want, for our loved ones and ourselves. The goal, she emphasizes, is not to turn away from treatment. Rather, it is to have the treatment we want, and not the treatment we don’t want. The Conversation Project (TCP) is agnostic on the subject of medically-aided dying and does not downplay the importance of tools like wills or medical directives. But, Lloyd says, these documents cannot take the place of—and are frequently far less effective than—one-to-one communication.

“Too often we wait until there’s a diagnosis or a medical crisis,” says Lloyd, “and then find it really hard to initiate the conversation. But if there’s permission, and room for this conversation because it’s been normalized, then we have the chance to say things like, ‘I’m doing okay right now, but in case things were to change, I want you to know that this is what is important to me.’” The goal “is that your loved ones will have your voice in their head when they have to make a crucial decision.”

TCP has developed a set of free starter kits to help individuals, families, and religious communities navigate this process. Conversations can take place around the kitchen table, during a drive in the car or a walk, or while drying dishes together. It can even take the form of a letter or an email. “It’s not one single talk,” says Lloyd. “It’s many conversations, over time, because things change.” In March, TCP released the “Getting Started Guide for Congregations (PDF),” which Lloyd hopes will inspire more UUs to integrate this topic into their congregations.

Lloyd believes that such conversations can have important implications beyond the walls of the church: “When people have spiritual reflection and support from their faith tradition it strengthens them to lift their voices and assert their wishes in their health care,” she says. “That can be transformational in a culture where [some populations have been] historically oppressed and have not been given that agency and respect.”

This fall, TCP and partner organizations will sponsor Conversation Sabbath, October 26 to November 4, inviting clergy to promote the importance of end-of-life conversations.

At the Boulder Valley UU Fellowship in Lafayette, Colorado, member Constance Holden has helped to create a workshop series called “Thoughtful Endings,” open to both fellowship members and the community. During her 48-year nursing career, Holden specialized in oncology and palliative care; she is the director and co-founder of the Conversation Project in Boulder County.

Even for someone with Holden’s experience and training, the conversation requires courage and support. “It was hard for me to have a conversation with my children, because we’re bringing up something that is really tender,” she says. Holden was motivated by a difficult death she had witnessed up close. “My father had much more treatment at the end of his life than he benefited from, and a difficult death, in part because I didn’t have this conversation. I didn’t have the courage—and I was a hospice nurse at the time.”

As a health care professional, she has seen the limitations of what she calls “treatment-focused documents” to serve as a primary guide for taking care of a loved one who can no longer articulate her own wishes. “I don’t know what the circumstances of my death will be, so I’m counting on my husband and my daughters to know what to do,” Holden says. “Using the conversation starter kit, I have identified my values, which they should be able to apply to the situation that presents itself.” She also believes that for UUs, “that humanist streak of ours” can serve as a useful prompt to “assert our influence over how our lives end.”

Holden describes one “Thoughtful Endings” workshop participant whose adult sons were extremely reluctant to have a conversation about end-of-life care. “He told his sons, ‘Look, I know you don’t want to have this conversation, so I would just like you to listen.’ Once they realized that he wasn’t going to be talking about feeding tubes and ventilators, they were able to listen to him talk about his values.”

This fall, a consortium of seven Boulder-area faith communities, including Baptist, Methodist, Episcopal, Lutheran, and Jewish congregations, is adapting the Boulder Fellowship’s “Thoughtful Endings” program. Holden looks forward to seeing the program in this new format. “It will be fascinating to see what unfolds when we have all of these different faith traditions in the same room, sharing and learning from one another.”

Like Holden, even experienced ministers can find talking to congregants about the end of curative treatment to be challenging. But they are finding ways to draw on diverse backgrounds and their own ministerial training to open space for conversation.

The Rev. Daniel Gregoire, minister of the UU Society of Grafton and Upton, Massachusetts, grew up in Brooklyn, New York, attending services led by his grandmother, a Pentecostal pastor. “She would often take me to the funerals that she conducted, which were traditional, open-casket services,” he says. “I’m very comfortable in that setting, in sitting with silence with people, or being with people who are sick or dying. So that was a gift.”

Yet despite that exposure through his grandmother’s ministry, and more formal preparation during clinical pastoral education (CPE), Gregoire still feels that ministerial training has not offered enough opportunity for focused preparation in end-of-life pastoral care.

To integrate end-of-life themes into worship, Gregoire looks for occasions like Memorial Day, which provide natural opportunities “to bring more of the memento mori spirit into our church.” He is also hoping to add more end-of-life conversations in pastoral care, including that provided by congregants. “I would love to provide some training to my lay leaders in this subject and help make that a shared ministry.”

One of the steepest challenges, Gregoire says, is finding ways to open conversations with individuals who are nearing the end of life about the kind of care they want and need. “I’m still learning how best to minister to people when I realize we need to be having a different conversation—not about what curative strategy we’re going to try next, but a conversation about palliative care and what might that look like for you and your family. I am still learning how to do that,” he says. “I want to prepare. I want to be ready for my congregants when they need me.”

The Rev. Dr. María Cristina Vlassidis Burgoa grew up in Chile, in a household adorned with Catholic saints and altars. “My grandmother was an elder in her church and a faith healer who specialized in taking care of new mothers and mothers who had lost babies or suffered miscarriages. So this was part of the home I grew up in, both the miracles of healing and the presence of death.”

Vlassidis’s call to the UU ministry came in the early 1990s while she was working as an attorney in a hospice program in Roxbury, Massachusetts. “I was assigned to the AIDS law clinic, to help patients sign wills and guardianship papers. I found myself surrounded by death, trying to infuse inherent worth and dignity into the care I provided.”

Today, Vlassidis serves the Starr King UU Church in Hayward, California. She views her ministry as an arpillera, a tapestry of experience, weaving together her Latinx, indigenous, immigrant, queer, two spirit identities. Her graduate research at Harvard Divinity School centered on funeral rites for children, including an Afro-Caribbean tradition she learned about in Loíza, Puerto Rico, called the baquiné. In the baquiné the community gathers around the body of the child to honor the lost life and to create a space for grief and healing through lamentation, singing, stories, food, and play.

As a minister, she is still trying to create “a larger menu of options for pastoral care in this multicultural world” with the vibrancy of the baquiné and her grandmother’s faith healing. While she cautions against treating the traditions of other cultures as “exotic” artifacts for appropriation, she thinks that “by looking closely at how other cultures deal with death and loss” we can gain “a more expansive view of death.”

Vlassidis also believes that the ways we treat grief and loss can connect deeply to social justice work. “In the Black Lives Matter movement we are dealing with trauma and loss as well as injustice,” she says. “We’re offering up a communal lament for lost children, for bereaved mothers and fathers. Immigration justice has also given us a chance to be with families who’ve experienced trauma. For me there is a connection between a ritual like the baquine, where the community gathers around the body of the child and supports the family, and Black Lives Matter, when the community gathers in the streets. These are instances of the community showing up and standing up for each other. This is all directly connected to our UU Principles.”

Lloyd agrees that end-of-life conversations are linked to the larger work of our denomination. “An essential part of our UU faith is to bear witness, and to stand by those who need us,” she says. “What does it take to stand with those with advancing, serious illness, who are ‘sick unto death’?”

‘There’s a grief that makes sense in terms of loss, but there’s another kind of grief that comes from being unprepared for loss,” says Cheryl Giles, the Francis Greenwood Peabody Senior Lecturer on Pastoral Care and Counseling at HDS. It is this second form of suffering that our faith communities can help to relieve, Giles believes, if ministers and congregations engage this subject together.

“Ministers, like most people, have the same fear and reluctance to have conversations about death and dying,” says Giles, who emphasizes end-of-life issues in several courses she teaches ministers in training at HDS. In “Compassionate Care of the Dying,” she and co-teacher Chris Berlin assign students to write their own obituary; other assignments invite students to reflect on their own experiences of loss, such as death, divorce, or family rift. By examining the emotions that arise during these assignments, students can prepare to counsel others and to understand these milestones as a normal part of human development.

Giles, an African American who was raised Roman Catholic and is now a practicing Buddhist, believes that helping people discuss their own mortality is a justice issue. One way to reduce the disparities in health care that African Americans other minorities experience is to bring end-of-life conversations into many faith communities and traditions so people can learn how to make more choices and exert more control in their care. Here, Giles believes that UUs may have a key role to play. “I think it would be powerful to develop an interfaith curriculum on death and dying, along the lines of Our Whole Lives,” the lifespan sexuality curriculum co-created by the UUA and the United Church of Christ. “The UU community has a lot of valuable experience and knowledge in terms of your social justice work, and in the creation of deeply-researched, intergenerational curricula.”

“I think of UUs as being lamplighters for many other faiths” in working for social justice, Giles says. “You’re not afraid to ask, ‘How can we get better in order to serve others?’ That’s where the light is.”