The impossible case of assisted death for people with dementia

Is it too much to ask people to follow through on previously expressed wishes for assisted death? An expert report suggests it may well be.

Dying with Dignity Canada’s CEO Shanaaz Gokool (centre) sits with Barb Brzezici (right), an assisted dying advocate whose mother died after a long battle with dementia, in Toronto, April 14, 2016.

When Canada legalized medically assisted death in 2016, the legislation excluded a trio of particularly difficult circumstances, committing to studying them in detail over the following two years. Those reports—on advance requests, mature minors and cases where a mental disorder is the sole diagnosis—were authored by three panels of eminent experts from a variety of disciplines, and in spite of the resolutely neutral and delicate language in the documents, they make for deeply compelling reading.

Of the three complex circumstances, it is advance requests—which would allow someone to set out terms for their medically assisted death, to be acted on at a future point when they no longer have decision-making capacity because of dementia, for example—that have drawn the greatest interest and agitation for change.

The working groups behind the reports were not asked for recommendations, but rather to provide detailed information on how other countries have grappled with these issues, what a modified Canadian law would need to take into account and how fields like ethics, philosophy, health care and sociology might help us puzzle through these issues.

And while they explicitly take no position on what the government should do, a close reading of the evidence the expert panel gathered makes it virtually impossible to imagine that advance requests for Canadians could exist and be acted upon.

That is not because the will isn’t there; many people with dementia or other illnesses that will eventually consume their cognitive capacity profoundly desire some sense of deliverance and control of their ending, for reasons that are easy to understand.

It is not because requiring help with every task of daily living, or being unable to communicate one’s thoughts or conjure up the names of loved ones is not a real form of suffering; for many people, that is just as intolerable as the spectre of a physically painful death.

And putting advance requests into practice doesn’t seem prohibitive because people who want them would be unsure about where to draw their line; indeed, that threshold is glaringly obvious for those to whom it matters most, and robust documentation and communication with health care providers and family members could provide much-needed clarity.

Rather, the reason it seems virtually impossible that Canada could have—and, crucially, use—advance requests is because it is simply too heavy a burden for those tasked with deciding when to follow through on the previously expressed wishes of the person before them, once that person can no longer meaningfully speak up for themselves.

“Evidence from international perspectives suggests there may be marked differences between stated opinion on hypothetical scenarios and actual practice,” the report notes. In other words, while people generally understand why others want advance requests and broadly support their availability, almost no one can bring themselves to act on them.

“It’s to be expected that these will be heavy decisions to be made, and I’m not sure that we would want them to be light, either,” says Jennifer Gibson, chair of the working group that examined advance requests for medical assistance in dying (MAID), and director of the University of Toronto Joint Centre for Bioethics.

Gibson’s group and the two other panels that examined MAID for mature minors and for people with a mental illness were chaired by former Supreme Court Justice Marie Deschamps and convened by the Council of Canadian Academies, a non-profit organization that “supports independent, science-based, authoritative expert assessments to inform public policy development.”

What is striking in reading the report on advance requests is how profound and deeply human it is, and how quickly the debate becomes almost dizzyingly existential—much more so even than the issue of assisted death in general. “There’s this human experience that we’re all sharing. We’re all in that together—that we are mortal, that we will die, that we will lose loved ones in our lifetime,” Gibson says. “That unavoidable vulnerability sort of encapsulates a lot of these policy and clinical and legal discussions that are unfolding.”

The report delves into concepts like the meaning of personal autonomy; how we care for those we love by shouldering the responsibility of making decisions when they no longer can; the concept of suffering and who defines it; how we weigh the interests of the patient against what their doctor and family are asked to handle; and which safeguards might help reassure those gathered at the bedside who have to make a decision.

“We can think about it as burden, but it’s not just about burden—it’s also about care….there is no question that burden is part of what comes with uncertainty. These are excruciating decisions that someone has to make on behalf of someone who is no longer decisionally capable,” says Benjamin Berger, a professor at Osgoode Hall Law School at York University and a member of the working group. “But a way of thinking about the burden is also, ‘Am I doing the right thing?’”

And a deeply conceptual sense of the self is central to the report: if in the present, you decide on and record a series of conditions under which you would no longer want to be alive, and you later become incapacitated, are your present and future selves the same person given how profoundly you’ve changed? If, once you are incapacitated, you appear perfectly content or even outright resistant to the MAID procedure you once requested, which version of you and which set of wishes and desires takes precedence, and why?

“Under what conditions might we expect that somebody would so radically lose those core compass points, if they lost capacity to make certain types of decisions, that they would become an entirely new person?” Gibson asks. “It is an existential question.”

And the report puzzles at length over this: can you really know from your present vantage point what your future self will want, how you might suffer or find joy in whatever your life looks like over the next horizon?

Research demonstrates that we are not very good at estimating what our quality of life would be if we fell ill or had some form of disability. This phenomenon, known as “the disability paradox,” is “pervasive,” the report notes. “The underestimation of quality of life by able-bodied or healthy people, rather than its overestimation by those living with a disability or chronic illness, drives the disability paradox,” the expert panel notes.

But again, in the debate over advance requests, this circles back to a deep concept of self: even if you are completely content once you are incapacitated, how much does that matter if your past, competent self loathed the notion of spending years in a long-term care facility needing help with every daily activity?

“Simply pointing to the idea that autonomy is respected and autonomy is important fails to wholly solve the most difficult issues in this field,” says Berger. “The question everybody is trying to ask is, understanding that autonomy is a core issue, what is the right method of ensuring that we respect autonomy?”

But for all of these sprawling legal, philosophical and ethical conundrums, it is when the report explores the experience of other jurisdictions with more experience practicing MAID or more liberal laws than Canada’s that the true difficulty in putting advance requests into practice for people with dementia becomes obvious.

Just four countries—Belgium, Colombia, Luxembourg and the Netherlands—allow advance requests for euthanasia in some form. However, “nearly all” of the information we have about advance requests in practice comes from the Netherlands, the report notes, because of “lack of implementation experience” in Colombia and Luxembourg, and very little detailed data available from Belgium.

The 2002 Dutch law that formally permitted the practice of euthanasia that had been going on for decades allowed for written advance requests for anyone aged 16 and older, in which they must clearly lay out what they consider unbearable suffering and when they would want euthanasia performed. Those would apply when people could no longer express their wishes and would have “the same status as an oral request made by a person with capacity,” the expert panel reports.

But while the annual reports from RTE, the regional review committees that govern euthanasia in the Netherlands, do not report the number of deaths due to advance requests, they do show that between 2002 and 2017, “all or most” of the patients who received euthanasia due to suffering from dementia were in the early stages of the disease and still had capacity to consent.

A study of 434 Dutch physicians between 2007 and 2008 found that while 110 had treated a patient with dementia who had an advance request, only three doctors had performed euthanasia in such a case (one doctor helped three people to die); all five of those patients too were “deemed competent and able to communicate their wishes.” The paper concluded that because doctors could not communicate with the patients otherwise, “Advance directives for euthanasia are never adhered to in the Netherlands in the case of people with advanced dementia, and their role in advance care planning and end-of-life care of people with advanced dementia is limited.”

Indeed, in 2017, a group of more than 460 Dutch geriatricians, psychiatrists and euthanasia specialists co-signed a public statement committing to never “provide a deadly injection to a person with advanced dementia on the basis of an advance request.”

And while family members of people with dementia support the idea of MAID if their loved one had an advance request, when it comes to acting on that, the majority—63 per cent in one study and 73 per cent in another—asked a doctor not to follow the request and actually provide euthanasia, but instead to simply forego life-sustaining treatment. “Some of the reasons given by relatives were that they were not ready for euthanasia, they did not feel the patient was suffering, and they could not ask for euthanasia when their loved one still had enjoyable moments,” the report explains.

Other Dutch studies show distinct contours in opinions on advance requests in cases of advanced dementia; the general public and family members of people with dementia view it more permissively than nurses and doctors, and doctors are most restrictive of all. “The authors of these studies hypothesized that this could be due to the different responsibilities of each group,” the working group wrote. “Physicians actually have to carry out a patient’s request, and when a patient cannot consent, this act comes with a heavy emotional burden.”

Here in Canada, the federal government has said it has no plans to alter the law to permit advance requests, even in the face of intense interest and pressure around the issue in a particular context a few months ago. In November, Audrey Parker, a vivacious Halifax woman with Stage 4 breast cancer, died by MAID two months earlier than she wanted to, because she feared cancer’s incursion into her brain might render her unable to provide final consent for the procedure if she waited. Parker spent her final months as the highly visible and compelling face of people like her, who are approved for MAID but forced to seek it earlier than they want to—or reduce badly needed pain medications—for fear they will lose the lucidity required to consent.

When it comes to concerns about determining when a patient with an advance request is ready for MAID, how clear their conditions are and whether they may have changed their mind if they can no longer communicate, the report suggest that cases like Parker’s would be the simplest and least controversial in which to permit advance requests. “These issues would likely not arise if a person wrote a request after they were already approved for MAID,” the working group notes. “In this case, they would be able to confirm their current desire for MAID themselves, and may even choose a date for the procedure.”

But when it comes to dementia—the condition which seems to inspire the strongest public desire for advance requests, and for which the disease trajectory is longer and more uncertain—the situation is much more difficult.

It is rarely useful to frame a public policy debate in terms of factions of winners and losers. But with the notion of advance requests for people with dementia, it is difficult to avoid the sense that in order for one group to get what it very understandably wants—a sense of control and escape from an existence that is at least as intolerable to some people as physical suffering—another group must shoulder a different sort of crushing burden—namely, the medical practitioners tasked with actually performing MAID and the family members or substitute decision makers who would have some role in sanctioning the procedure based on their loved one’s recorded wishes.

But Gibson argues that the solution to a heavy burden is not to make it light, but rather to ask what supports and measures would be required to bear it if such a thing were available in Canada. “And some members of the panel were really doubtful that anything would be sufficient to bridge those uncertainties, whereas others on the panel said, ‘I think we’ve got some experience with this, I think we could,’” she says. “There’s not going to be some external adjudicator to tell us we got it right.”

And while there is something distinctly fraught in decisions about MAID, she points out that families all over the country contend every day with life-and-death medical treatment decisions behalf of the people they love.

“It’s part of the ways in which we express love and caring for our loved ones, is we care for them even when they’re unable to care for themselves,” Gibson says. “We ought not to be surprised that these decisions are burdensome. And at the same time, they’re burdensome precisely because of these human connections that we have.”

The immense weight of these choices, then, is the price of admission for the bonds we share, and for the meaning we assign to life itself.

Complete Article HERE!

What does dying — and mourning — look like in a secular age?

Twenty-nine percent of Americans anticipate a secular funeral.

Artist Day Schildkret works with New Yorkers to create an art installation as a way to remember the the beauty and dignity of human life.

By Tara Isabella Burton

When somebody dies in the Catholic tradition, people generally know what to do. There’s the saying of the Last Rites at a dying person’s bedside, the vigil for the deceased — also known as a wake — and, often, a formal Mass of Christian Burial.

In the Jewish tradition, there’s the practice of sitting shiva: the week-long mourning process during which the family of the deceased remains at home, and friends and relatives call on them to pay their respects.

In the Islamic tradition, the deceased’s body is ritually bathed and shrouded in white cloth before Muslims of the community gather to perform the Salat al-Janazah, the customary prayer for the dead.

But what happens when you die and you don’t follow any faith tradition?

When Iris Explosion — an entertainer and social worker who prefers to go by her stage name — was widowed unexpectedly at age 28, she and her friends had to create the memorial service for her husband, Jon, from scratch.

Explosion and her husband were not conventionally religious — she describes herself as a “lax Jew,” while her husband, a queer man interested in alchemy and other occult practices, often felt alienated from the born-again Christianity of his parents. The memorial service her friends created a few days after his death, she says, contained a blend of traditions and practices individual to Jon.

A Jewish friend recited the Mourners’ Kaddish. The group told stories — some reverential, some “bawdy” — that reflected all aspects of Jon’s personality. They played an orchestral rendition of the theme song to Legend of Zelda, Jon’s favorite video game. Friends from out of town dialed in on Skype to share their stores. Numerous friends gave Explosion rose quartz, a stone associated in some New Age and occult traditions with heart healing, as a gift.

The memorial service — as well as a second funeral service, which took place a few months later, and was similarly eclectic in style — focused on Jon’s personality and interests rather than being constrained by a specific set of traditions.

Explosion is just one person among the 24 percent of Americans who identify as religiously unaffiliated. For the religious “nones,” the issue of what happens when you die is an open question in more ways than one. According to a 2008 American Religious Identification Survey, the most recent year for which data is available, 29 percent of Americans do not anticipate having a religious funeral, for whatever reason, and given the steady increase in religious “nones” over the past decade, that number will likely only rise.

But what do secular funerals — or death rituals more broadly — look like? What can they provide that religious death rituals can’t? What are the challenges involved in putting them together?

And as secular funerals become increasingly individualistic, tailored to the preferences and needs of the deceased, rather than a given religious or spiritual tradition, what does that mean for the sense of community engendered by ritual?

Secular funerals are part of a wider “unbundling” of religion

It started with weddings.

Scholar and psychologist Philip Zuckerman, author of Living the Secular Life, suggested in a telephone interview that secular funerals are just the latest iteration of the secularization of major life stages overall.

Its genesis, he said, lies in the proliferation of secular weddings in America. In 2017, just 22 percent of American weddings took place in houses of worship, a nearly 20-point drop from 2009, according to data from the wedding website the Knot.

“The first thing we saw was zillions of people going online and registering with the Universal Life Church,” said Zuckerman, referring to an organization that virtually automatically ordains people over the Internet, “so they can perform their own weddings for friends and family, so they can still make it sacred but not under the auspices of religion.”

Different states have different laws about the extent to which Universal Life ordinations are legally valid for performing weddings. Funerals, however, have no such restrictions.

Zuckerman posits that among the people he’s interviewed for his book research, the desire to have a secular funeral isn’t just about not wanting to affirm the existence of a God or an afterlife that the deceased may or may not believe in. Rather, he says, it’s also about wanting to preserve a sense of the deceased’s individuality.

“They just don’t want fairy tales. They don’t want to be told, ‘So-and-so’s in a better place now,’ or, ‘So-and-so is now suckling the bosom of Jesus’ — they can find that talk annoying,” Zuckerman said. “We want to curate our own Facebook page. Why wouldn’t we want to curate our own funeral?”

More and more, Zuckerman said, he sees people choosing their own music and their own speeches that they want to be read after they die. “I think that is part of our growing individual and less of this care of tradition … more and more people want to feel the idiosyncrasies of the dead person and the specialness of the dead person.”

This attitude, he said, is particularly prevalent in the United States. “We all like to think in the United States that we’re special. Why wouldn’t we want our funerals to be special too?”

Certainly, for Iris Explosion, commemorating Jon’s life in a way that felt true to his personality and character was a priority. From sharing Jon’s favorite Spotify playlists with his friends to curate the music selection for the services to working in references to My Little Pony — a show Jon loved — Explosion and the couple’s friends created a memorial for Jon that fit his character.

By contrast, Explosion said, she declined to attend other memorial services, like one hosted by Jon’s family in his home state, that had a more Christian focus, instead circulating an email to attendees of that service asking them to donate to Planned Parenthood, which she felt better reflected her husband’s values.

Explosion’s experience dovetails with a phenomenon called religious “unbundling.” A term coined by Harvard Divinity School researchers Casper ter Kuile and Angie Thomas, who have covered how phenomena like CrossFit and Soulcycle function similarly to religions for their participants, “unbundling” refers to the way both the religiously unaffiliated and the religious alike are increasingly willing to pick and choose elements of spiritual traditions.

Someone might, for example, be a committed Christian but also practice Buddhist meditation or yoga, or be an atheist but attend Jewish family holidays and read tarot cards. In a pluralist landscape, in which people are used to gathering information and ideas from multiple sources (not least through the internet), a more individualized approach to religion and life rituals is all but inevitable.

As a culture, we still haven’t figured out what secular death rituals should look like

Even for those of traditional faiths, death is a phenomenon that defies easy answers. But for the religiously unaffiliated, processing and dealing with death and its aftermath can be an especially loaded task.

Brad Wolfe is trying to help them do that.

Wolfe is the founder of the week-long Reimagine End of Life festival. The singer-songwriter and author was inspired to work in the end-of-life space after watching a close college friend’s struggle with terminal cancer. The festival, which takes place in New York and San Francisco, partners with community centers and artists to curate a 300-strong series of events — from talks to workshops to performances to museum displays — dealing with the subject of death.

“Death is often the central coalescing element around which many religions are formed,” Wolfe told me in a phone interview. “As we’ve become more secular in some communities … there’s an increasing hunger for that space … to come together and explore this topic.”

The New York festival, which took place around Halloween, featured a range of explorations: a class on how to write your own obituary, doctors talking about dealing with their patients’ deaths, live musical performances exploring themes of loss and bereavement.

Participants speak at the the Nocturnists storytelling event where doctors from Mount Sinai, New York University, Columbia, and other local hospitals share their personal experiences with death.

What connects each event is a sense of intentionally: that people are actively setting aside time and space to deal with a weighty topic.

Both Wolfe and Zuckerman identify similar elements of what that “coming together” looks like. Ideally, both say, it involves elements of ritual, community gathering, and a sense of meaning: How do we conceptualize a person’s death as part of a bigger picture?

Wolfe suggested that we might be better off looking at this “coming together” not as a nonreligious event but as an expansion of the definition of what religion means. At least two Reimagine events are, fundamentally, immersive theater performances. In one, participants are invited into a phone booth to have conversations they wish they’d had with somebody who has died.

In another, participants role-play members of a fictional bereavement support group. Speaking about these events, Wolfe argued that the lines between art, ritual, religion, and performance are deeply blurred.

“The boundaries between art and religion are more porous when it becomes a practice explored with intention,” he said. What matters is the sense of significance shared by participants: “Having a practice, a shared system, allows us to connect in ways that give us a sense of comfort and something we know we can turn to.”

The idea or combining artistic creation and end-of-life ritual is far from new to Janie Rakow, president of the International End of Life Doula Association. As a “death doula,” Rakow works in hospices, helping those facing the end of their lives develop rituals and practices around their death. While she works with patients from a wide variety of religious backgrounds through the hospice, she tailors her work and approach to the individual in question.

One of the most important parts of the end-of-life process, she says, is the act of creation. She helps her patients develop what she calls “legacy projects”: individual artistic works, from a memory box to audio letters.

“Everyone has a legacy,” Rakow says. “So [I ask myself] what kind of legacy project could we possibly create with this person to really leave behind a sense of who they are or were?”

Next, she asks patients to help plan their own death — where they would like to be? What music they would like to be listening to?

“There may be some ritual work done around that,” she says, even if it’s “as simple as surrounding their bed, holding hands, saying a prayer or saying poetry, reading something to them, [or] lighting a candle.”

The point is to help dying people take an active, creative role in the story they leave behind.

Doula Craig Phillips pauses before entering the room of a person who is near death at the Gilchrist Hospice in Baltimore on June 6, 2016.

Often, Rakow says, these rituals are tailored to individual passions. She gives the example of one man she worked with, who was dying from ALS, a degenerative neurological condition that prevented him from being able to move. With his wife, Rakow created a series of guided visualizations for the man, who loved hiking, “so we would bring him with his eyes closed on the most detailed and specific hike that we could from the very beginning to hiking all the way through.”

She’d walk him through ”smelling the forest and feeling himself walking up the hills and hearing the birds chirping and looking over at the crystal clear lake. And the more descriptive we could get, we were able to bring him back into his body that he wasn’t able to use through his mind.”

Secular rituals present their own set of challenges

One of the most difficult parts of creating secular death rituals is compensating for the lack of built-in community, or built-in structure, that often accompanies more established religious traditions.

Zuckerman pointed out that the secular bereaved don’t necessarily have a clear road map, or community support, to help them deal with the pragmatic aftermath of a death.

“One of the biggest problems for secular culture [is that] you have to cobble together and make it yourself. If you want your kid to have a bar mitzvah, it’s all taken care of. You want your kid to go through confirmation class in the Episcopal Church? Boom, they’re enrolled. If you want to do a secular version of that? Good luck. You’re on your own. You have to figure it out, explain it to people, rent the space, find people, figure out how to write up your own program. … It’s a lot of effort.”

The lack of intentional secular communities, Zuckerman said, only intensifies this problem. “With religious communities,” he said, “not only is the structure of the funeral in place, but there are going to be people who are going to immediately sign up to cook dinner for your family for a month and they’re going to deliver food to your doorstep and they’re going to help you get your kids to school and they’re going to do a lot for you. And when you’re secular, you don’t have those kinds of resources.”

Pallbearers escort the casket to the altar during the funeral for Watertown firefighter Joseph Toscano at St. Patricks Catholic Church in Watertown, Massachusetts, on March 22, 2017.

For some secular Americans, the idea of having a “chosen family” — a close-knit network of friends — helps fill in the gap. Just as Friendsgiving has become a phenomenon among urban millennials, friendship networks more broadly have become an increasingly vital part of social cohesion, replacing both extended family structures and traditional organized religious communities.

That was certainly the case for Explosion. She cites her friends’ involvement in making the service possible at a time when she didn’t feel capable of planning herself. “I needed camaraderie and community,” she said, and I feel like I had it.”

At the same time, she says, she had less of a blueprint for how to cope with the next stages of grief after about six months.

“People go back to their own lives,” she said. “And it was hard to feel that sense of community. Without a church or synagogue to bind us together, it maybe felt like it dissipated. People missed their friend and their co-worker. But for me, it’s like, I miss my husband who lived with me, and it was hard to feel that sense of community after time had passed.”

The next step forward might be intentional secular communities

Explosion’s story points to a wider tension in the world of secular funerals and the creation of secular culture more broadly. On the one hand, the benefits of the “unbundled” religious landscape, for many secular Americans, lie in the opportunity to create truly new, individualistic rituals and experiences. We have the opportunity to curate our identities and public personae event after death, creating experiences that feel unique to us.

On the other hand, what risks getting lost in the process is precisely that feeling of collective identity that demands subsuming our individuality in a wider whole. Religious rituals and language, from Catholic ceremonial liturgy to the Salat al-Janazah, may not feel fully and uniquely “us,” but they nevertheless define and orient a wider community and give us a sense of shared values.

The 19th-century sociologist Émile Durkheim saw religion primarily as a shared construction of identity; in his seminal 1912 work The Elementary Forms of Religious Life, he wrote, “The most barbarous and the most fantastic rites and the strangest myths translate some human need, some aspect of life, either individual or social.”

As more and more Americans leave organized religion, the next question is whether, and how, many of them will gather together, and how an increasingly individualistic conception of identity can be reconciled with the real, human need for group belonging. As secular funerals and death rituals become the new standard, we may see some of these rituals become more group-centric.

For Explosion, for example, the process of grieving led her to an unexpected new ritual. During her husband’s life, she said, she often played a video game called Destiny with him, looking up the location of objects hidden in-game and giving him hints to find them. While she never particularly got into the game, she said, she enjoyed playing it with him. After his death, she started watching YouTube videos of people playing the game, or its sequel, to remember the time they’d shared. Then she decided to buy the game’s sequel to play it herself.

“I’ve been playing this game I wouldn’t have played if he hadn’t died. And it’s been meditative for me. Finding the little things, like doing these things we used to do, felt like a pilgrimage in a way,” she said.

Sometimes, Explosion communicates with other players in the game online. While she’s only told a few of them about her personal history with the game, she’s nevertheless found a community that can accompany her in a time of grief.

“When we do a big quest or a raid together, there’s always a moment for me of, you know, okay, he would have done this. He did this in the old game. Now it’s me kind of picking up this mantle.”

The secular funeral liturgies we see in the future may transition from being individualistic to being based on other nonreligious elements that bring a community together. They may involve the music of My Little Pony or the playing of video games.

Ultimately, they’ll represent two fundamental human needs. First, to make sense of a beloved’s death. And second — and just as importantly — to not do it alone.

Complete Article HERE!

A Place for Death in the Life of the Church

What does faithful ministry look like in a church that sees more funerals than baptisms?

BY

I remember the first time I touched a dead body. It was at my grandfather’s funeral. You know the scene: attendants in boxy black suits, the cloying scent of flowers, tissue boxes, breath mints, dusty funeral parlor furniture. As the sad murmur of relatives droned all around, I stepped up to the coffin and quickly reached in to touch his embalmed hands, folded nicely on his belly. They felt like cold, soft leather.

That was when death was still an anomaly to me, an outlier. Now it has become familiar, a recurring pattern in recent weeks and months. For the past several years, I’ve served as a pastor in a suburban parish, an evangelical who made his home in a mainline church. I don’t run the show, since I’m a lay pastor, but I’ve been there for most of the funerals. In the past few years we’ve had almost 40 in our parish. Those are a lot of faces I won’t get to see any more on Sunday mornings. Death is no longer a stranger to me; it is a regular part of my life.

This has been one of the more difficult parts of being a pastor, seeing people who faithfully served our Lord over decades take ill and start a steep decline. These deaths don’t have the shock of tragedy, of teenagers hit by cars or babies born without breath. Still, the dull ache of sorrow is there.

It wasn’t always this way for me. I grew up in a thriving megachurch (by Canadian standards, anyways), and I took it for granted that slowly and surely our congregation would continue to expand. And it did, all through my teen years. As I looked out over the congregation on Sunday mornings, I could see a diverse group of people from ages 15 to 60. But children were most often annexed to their age-appropriate ministries, seniors were few and far between, and funerals were not a constant. The bulk of our congregants were in the prime of life.

Later, when I began my pastoral ministry in a congregation that skewed to those over 65, I became frustrated as our church struggled to thrive. Growth no longer just seemed to happen. And though we saw many young families drawn deeper into the life of Christ, we also lost many veteran saints. I learned to care for the very young as our nursery filled up, and I learned to walk with the aging as they lost the strength to sit in our pews.

Though I looked longingly at congregations that seemed to expand effortlessly, I learned to love the slow work of pastoring a struggling congregation. I took in the beauty of a woman in her 80s dancing with toddlers and singing worship songs. And I remember the 70th wedding anniversary of a couple that faithfully attended worship for just as many years. These quiet miracles don’t have the same luster as other “vibrant” ministries I’ve been a part of, but nonetheless, they witness to the patience and love of God. I came to appreciate the church as the body of Christ formed of the whole people of God, from young to old—even those heading to their graves.

Pastoring an Aging Congregation

Death does not fall outside the life of Christ’s Body; it is a threshold through which we all must walk. Recognizing death as part of our common Christian life allows for a more expansive vision of God’s redemption, which begins the day we are conceived and carries us into our dying

I’ve come to appreciate my close experiences with death. When I look at large, booming churches or hip, thriving church plants, I wonder if their pastors experience the regular privilege of burying octogenarians. I’m glad for these growing churches, insofar as people are having encounters with Christ and his Word. I wish so many of the churches in my denomination would thrive like that. Yet I’m learning to appreciate aging congregations like my own in which the whole community of faith mourns with the death of each faithful servant.

I recently read Kate Bowler’s book, Everything Happens for a Reason: And Other Lies I’ve Loved. Bowler was diagnosed with stage IV colon cancer at age 35. She was enjoying a vibrant career, academic success, and a wonderful home with her husband and toddler. The news of her cancer seemed to crush all of that. Life had to be put on hold for chemo, rest, and preparation for dying.

She writes in her memoir about churches in which blessings come as the direct result of fierce faith. She writes, “The prosperity gospel is a theodicy, an explanation for the problem of evil. It is an answer to the questions that take our lives apart. … The prosperity gospel looks at the world as it is and promises a solution. It guarantees that faith will always make a way.” Bowler writes that she tacitly held to a tamer form of prosperity gospel logic. She expected that, if she followed Jesus, things would go pretty well because God loves her and wants her to have a good life.

I often find myself believing the same thing about my church: if we worship Jesus and do his will, he will bless us with new members and increased vitality. Stagnant membership and death in the congregation feel like punishments for lack of faith.

But God throws wrenches in the wheels of our theological systems. We get fired. We get divorced. We get sick. We die.

Our local congregations lose their liveliness. They suffer from conflicts. They struggle to raise funds. They shrink

Christians believe that “death is swallowed up in victory” (Isa. 25:8, 1 Cor. 15:54). Our faith is built upon the fact that Christ has died, Christ is risen, and Christ will come again. But our experience of death is not always so straightforward. Our sojourn still leads to our bodies being cremated or placed in a coffin.

Helping People Reckon with Death

In many churches I’ve attended, death was pushed to the margins. It was treated like an interruption to God’s work in the world, not as an instrument by which God draws people more fully into his own life. I’m not saying we should love death—after all, it’s still “the last enemy” (1 Cor. 15:26). But part of living as disciples is learning to die well.

Ephraim Radner, professor of historical theology at Wycliffe College, writes,

“To die well” is to locate what is good somewhere outside our control—in the God who gives and receives our lives. It is also to allow that alien goodness, the goodness of God’s transcendent superintendence over life and its temporal duration, to inform the very meaning of our vulnerability to illness, suffering, and death.

In other words, by embracing death in our churches, we allow our creator to give meaning to our human weakness.

Stanley Hauerwas notes in God, Medicine, and Suffering that Western culture shifted from preparing Christians to die well in the medieval period to franticly attempting to cure us from death in contemporary society. He writes, “We have no communal sense of a good death, and as a result death threatens us, since it represents our absolute loneliness.” According to Hauerwas, we need to learn once again how to grapple with our mortality.

Stories like Bowler’s, then, make me wonder about the kind of church we ought to be. What might it mean to be a church where people regularly come face to face with death? How can we present the gospel in a way that changes hearts, but also ministers to people whose earthly lives will never return to “normal?”

One way in which pastors can deal with death is by talking about it openly in sermons and in conversation. I remember talking with a friend who has since passed away from cancer. He told me that many of the Christians he encountered didn’t want him to talk about the possibility of death. They wanted him to stay positive, focusing on things he could do to get better. He knew that he wouldn’t, but he felt the pressure to stay positive for the sake of others. When I talked frankly with him about the possibility of death, he seemed to breathe easier. In naming death, he allowed the grace of God to come to him even there.

We talk about illness and aging as “battles”; to die is to lose these battles. But staying alive is a battle we all lose eventually—some quickly, some slowly—so we might as well invite God’s presence into our dying. In the cross we understand our living and our dying. What better place to learn this than the church? Who better to initiate these conversations than pastors? Sure, I want my church to be dynamic, vibrant, growing; I pray to God for this. But I also want to cultivate a church where people can reckon with death, worshiping a savior who won his victory hanging from nails pinned to a wooden cross.

Complete Article HERE!

A time to die? Why I believe in the right to choose

It’s the beginning of a new year and the script is that we talk about hope. It was a challenging 2017 but things will be OK. New opportunities, fresh blessings, more love and more joy.

 

So why am I wanting to talk about death? Well, it’s personal and also professional.

A doctor watches over a deceased hospital patient.

By Rosie Harper

[I]t’s personal because I have just booked flights back to Switzerland to go to the funeral of my much loved uncle Albin. He died two days before Christmas, aged 82, gently and peacefully with his family around him. About six years ago his younger brother Otto also died peacefully with his family around him. The difference was that Albin died of old age and dementia, Otto died of a nasty aggressive brain tumour. Albin died ‘naturally’. Otto, being Swiss, was able to request and receive the help he needed to die in a dignified and pain-free peaceful way. This merciful intervention in no way changed the fact of his death, and even now the sorrow is hard to bear, but it did cut short the last bitter agonies of the manner of his dying.

It is professional because in the parish where I work there are a lot of funerals. Mostly the bereaved tell me of the immense kindness of all around; family and friends, doctors and nurses. They tell of the shock of sudden unexpected death and also the oblique conversations about the use of morphine. They also sometimes tell me of bad deaths. Deaths where there is no way of giving the dying person their final wish: ‘Please, dear God, please help me to die.’

Don’t tell me that the time of someone’s death is purely God’s business. That at the moment when all a human soul wants is for it to end, God stands at the end of the bed and says: ‘No my child, it is my will that you suffer just a few more days.’

That is pure fatalism and superstition. Even people who would use language such as ‘God has a plan for your life’ don’t actually mean that everything that happens to them from birth to death is controlled. Of course not. We rejoice in our free will, even in the knowledge that we risk misusing it. That’s part of the deal. Our conception is a risk. We may be born to loving parents, or our mother might have been kidnapped and raped. The will of God? Throughout our lives we make choices and many of them are life and death choices. To smoke or drink or over-eat. To enjoy extreme sports, to ride a motorbike. For all those things we choose and we also take responsibility.

When our lives are nearing the end there are now many societies where that degree of both choice and responsibility remains. That is not the case in the UK.

Just when you might think we need our freedom the most, the medical profession, by law, takes it away from us. Just when you might think that God would most honour the freedom he has given us, the Christian community takes it away from us.

I’m with Hans Küng. If the time comes, and it is necessary for me, I would find it a fulfilment of my life of faith to be able to say to God: ‘Loving Father, I thank you for the most wonderful gift of life. The burden of it is now too much for me to bear and so with every ounce of love and gratitude I can muster I give it back to you.’

Complete Article HERE!

How funeral traditions differ across Abrahamic religions

Funeral practices are deeply integrated in culture, reflecting beliefs and values around death. Offering an index of religion, funeral traditions in Abrahamic religions bear quite different stages as well as certain similarities

 

An Islamic funeral in Pakistan

By AYŞE BETÜL KAYAHAN

[H]aving become a subject of philosophy, psychology, sociology as much as it has of anthropology and theology, mortality has always been a matter of interest throughout history as well in the present day. There is even a scientific field named “thanatology,” the science of death.

The anthropology of death brings us the very different funerary customs that have been in practice throughout history.

To start with a common example, ancient Egyptians used to embalm the deceased and built giant pyramids to house the embalmed bodies of their kings and pharaohs. Other interesting burial traditions include those of the ancient Greeks, recorded in anthropological records or literary works like those in Homer’s “Iliad” and “Odyssey.”

As far as can be understood from historical accounts telling about the funeral of Attila the Hun, ancient Turks used to show their grief by hurting themselves. Before the 6th century, Turks were burning the deceased with their belongings and horses, and keeping the ashes to bury in autumn or spring. Certain Chinese and Arabic accounts report that it was the Kirghiz people who were the first Turks to burn the body. However, it was after this century that Turks began to bury their deceased.

In Iran, dead bodies used to be buried before the arrival of Mazdaism (Zoroastrianism). Fire, soil, air and the water are considered as sacred in Mazdaism and the body must not pollute any of these four elements. There was no burning or burying but the deceased used to be abandoned outside. The same tradition was visible among the Sasanians, as they used to abandon the dead outside and bury the separated bones and flesh in a special containers called “Ossuarium” later on. Today modern Mazdaists bury their deceased. “Burial customs always have been an index of religion,” American scholar Richard Nelson Frye says.

According to Abrahamic religions, Islam, Judaism and Christianity, the appropriate way is to bury the deceased. It is believed that Cain (Qabil), the eldest son of Adam killed his brother Abel (Habil) and committed the first crime of murder. It was the first death on the earth and the first burial. It is still observed that Muslim and Jewish communities bury deceased people as a funerary custom following the order of the Quran and Torah. Cremation and embalming are strictly forbidden by Islam and Judaism. In both religions, burials take place as quickly as possible to honor the dead. Jews never hold a funeral on “Shabbat,” while there is no similar restriction in Islam.

Muslims and Jews prepare the body for burial by washing the body with warm water from head to feet. Jews call this process “Tahara.” Muslims apply “ghusl,” or the ritual of ablution. While washing, the body can be turned from one side to another to entirely clean it but it is never placed face down. In Islam and Judaism, the body is dressed in white burial shrouds and put in a simple wooden casket. Men prepare men and women prepare women.

In Islam, a person who is about to die is expected to say the “Shahada,” or the testimony of faith, which translates to, “There is no God but Allah and Muhammad is the Messenger of Allah.” His family or close friends should encourage him to say it because it is regarded as one of the first pillars of Islam.

When the person dies, those present close the deceased’s eyes and cover the body with a clean sheet. Someone is expected to read the Quran. As soon as the “ghusl” and shrouding are done, the deceased’s coffin is taken to the mosque for the funeral prayer “Salat al-Janazah,” which is a communal duty among Muslims.

The deceased person is put in front of the imam and the community behind him faces to the “qibla,” the direction of Mecca, in the courtyard of the mosque. When the prayer ends, the casket should be transported to the cemetery for burial. The body should be placed in the grave on its right side, facing the qibla. A layer of wood is placed over the corpse and then the soil is filled. Following the burial service, the family of the deceased accepts visitors at home.

On the other hand, Jewish funerals take place at synagogues. A Jew who is a Cohen, a descendant of the priestly class, does not join the burial unless the deceased is a close relative since he is forbidden to come near the corpse. A Cohen is commanded to be in state of purity and avoid ritual defilement by a corpse which is ritually unclean.

Women wear conservative apparel and men wear jackets in dark color. The service is held by the rabbi and begins by cutting a black ribbon to symbolize the person’s leaving loved ones.

After the funeral service, people go to the cemetery where men carry the casket. With prayers, the deceased is put in the grave with the casket. Mourners tear their garments as an expression of grief, which is called “keriah.” They keep on doing it during the first mourning process called “shiva” which lasts seven days. In “shiva” mourners keep the traditions such as covering mirrors and lighting candles. People visit the home of bereaved. There the “kaddish” prayer is recited.

Once a Catholic dies, the priest visits the home with a cross and a vessel of holy water to sprinkle over the deceased’s body. There is no washing or bathing but embalming is acceptable. It is also an appropriate way for the viewing and wake and vigil, which is a period of spending time with deceased before the funeral service at home or a funeral home. Relatives and friends of the deceased come, praying and sharing the grief of the immediate family. This is the most appropriate time to eulogize as the “Requiem Mass” (Catholic Church service) does not permit eulogies.

During the wake, the body is put on display in a casket. When the casket is brought to the church, the priest leads the funeral mass. Holy water is sprinkled and there is an opening song and prayer, and a sermon takes place from the Bible and a psalm. When the mass is completed the coffin is taken to the graveyard for the rite of committal.

For Eastern Orthodox Christians, there are differences in the funeral service compared to Catholics. When an Orthodox is about to die, the priest should be there to hear the final confession and administer the “Holy Communion” to the person. The first step is preparing the body that includes washing and clothing. When the body is bathed and dressed, the priest sprinkles the holy water on the four sides of the casket before the body is placed inside. The priest reads the first “Panikhida” (a prayer service). The wake lasts three days and during this, the “Psalter” (The book of Psalms) is read out loud by family and friends.

After this, the body is brought to a church in a form of procession led by the cross. There the coffin is opened and a bowl of “Koliva” (a dish of boiled wheat with honey) is placed with a candle on top, symbolizing the cyclical nature of life and the sweetness of heaven. A cross is placed in the deceased’s hand. Lit candles are distributed to those present in the funeral. The priest leads the “Divine Liturgy,” and recites “Memory Eternal.” Although saying goodbye differs in every society, from the preparation of the deceased to the disposal, the arrangements and funeral services in between actually show us all these funerary customs are important as much as for the bereaved of the deceased. The importance given to funerals is universal for honoring the deceased and consoling and sharing the pain of loss as well at the end of the day.

Complete Article HERE!

Americans want assisted suicide

Rev. Nancy Butler

On Wednesday the Rev. Nancy Butler of Riverside Family Church in Hartford died voluntarily. For two years she had been suffering the debilitating effects of ALS even as she continued to pastor the evangelical church she established in 2008 as “theologically open minded, diverse, empowering women and affirming of LGBT people.”

The letter she wrote to her flock last week begins:

I have decided to go off my feeding tube and vent this week and . . . how should I put it . . . die. I knew my suffering would reach this tipping point and caring for me would become impossibly demanding. What I didn’t know was whether or not God would want me to suck it up for some unseen purpose or end my life this way.

I am a little surprised God is confirming this decision. Nice to know He isn’t a sadist. He is oh so tender right now. He tells me my work is done and it’s the right time to come home.

Having a feeding tube removed does not legally count as assisted suicide, but we shouldn’t be fooled by the passive voice. Someone took the tube out, very likely a medical professional. Nancy Butler died of her own will, with assistance.

So did my mother Bernice, who consulted with her internist before deciding to stop eating and drinking six years ago. She was facing a painful death from peritoneal cancer and chose instead to end her life voluntarily. That was not, technically, assisted suicide either.

Assisted suicide is defined as “knowingly and intentionally providing a person with the knowledge or means or both required to commit suicide, including counseling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs.”

Most Americans have no problem with that, so long as the person is facing a painful terminal disease. Indeed, according to a new study from LifeWay Research, fully two-thirds of them find it morally acceptable.

To be sure, a moral distinction can be drawn between providing a person with a lethal drug and withholding or withdrawing treatment or sustenance. But it’s a distinction without a difference, as far as most are concerned.

The moral issue, it seems, is not how death comes about but whether the terminally ill get to choose. The answer, increasingly, is yes. That goes for 70 percent of American Catholics, whose church has worked hard and with some success to prevent state approval of assisted suicide laws.

“The concept of physician-assisted suicide is a major affront to the teachings of the church,” Michael C. Culhane, executive director of the Connecticut Catholic conference, said last year.

But as a matter of public policy, the argument ought to be prudential. Will terminally ill persons be hustled into the next world without their really wanting to be?

The best empirical evidence we have in the U.S. comes from Oregon, where assisted suicide became legal in 1998. Since then, the annual number of legally sanctioned suicides has risen from 16 to 132, with a doubling since 2010.

That’s under four percent of Oregonians who died last year. Of them, 77 percent were dying of malignant cancers and 9 percent had ALS — as has been the case throughout the history of assisted suicide in the state.

I know that my mother chose what she wanted, and I’m confident that Nancy Butler did too. I’m with most other Americans in not wanting to stand in the way of those terminally ill persons who choose to do the same by way of lethal prescription. I cannot speak for God.

Complete Article HERE!

The Vatican may protest, but traditional funerals are dead and buried

A new decree forbids Catholics to scatter ashes, and insists on the sanctity of the cemetery. But in terms of burial options, the Vatican are way behind the times

By

‘Burial space in UK graveyards is at a premium, so people are moving towards alternative trends in the disposal of bodies.’
‘Burial space in UK graveyards is at a premium, so people are moving towards alternative trends in the disposal of bodies.’

[J]ust in time for the prayers for the dead on All Souls’ Day next Wednesday, the Vatican has restated its position on what can be done with the ashes of the faithful. In short, no longer can Auntie be kept in a mantelpiece urn or grandad’s ashes scattered on his local team’s football pitch.

Concerned about the adoption of “new ideas contrary to the church’s faith” suggestive of “pantheism, naturalism or nihilism”, the Vatican document conflates ashes-scattering with a dangerously new age spirituality, stipulating instead that remains should be kept tangibly in a sacred place. The Catholic belief in bodily resurrection at the end of days makes this position unsurprising, and the church clearly has a vested interest in discouraging casual rituals outside their control, but it’s a proscription that doesn’t sit well with current trends in the UK. The Vatican may face a harder battle against creeping modernism in the matter of burial and funeral practices than they bargained for.

Burial space in the UK is at a premium. The Labour government’s 2007 plan to allow the reuse of graves was given the green light in London, but the toxicity of the topic has seen it languish “under review” ever since for the rest of England and Wales. A Scottish bill to permit such recycling was passed in March. But such measures won’t make a significant dent in the 75% cremation rate, and the scattering of ashes is still a huge trend – the Mountaineering Council of Scotland warns that the sheer volume of ashes on the most popular summits is such that it is causing dangerous chemical changes in the soil.

The Vatican rejects the idea of death as “the moment of fusion with Mother Nature or the universe, or as a stage in the cycle of regeneration” that scattering in such natural environments represents; it also bans the use of ashes in memorial trinkets. In recent years, ashes have been used to make everything from records to tattoo ink, and such gung-ho going-ons have become associated with rock’n’roll abandon, from Keith Richards snorting his father’s remains, to the metal fan whose ashes were scattered in the mosh pit earlier this year. US experimental act Negativland went so far as to issue their new album this month with a small bag of the ashes of band member Don Joyce. Irreverent stuff, but the modern history of cremation in the UK started in no less paganistic style, with the failed prosecution of druid William Price for burning the body of his baby son on a pyre in 1884, setting a legal precedent that saw the practice legalised in 1902.

But cremation may not be where the individualism and valorisation of the natural world the church so fears is really thriving. Alternative trends in the disposal of bodies are moving towards burial. The Association of Natural Burial Grounds (ANBG) represents more than 270 woodlands and meadows run as natural cemeteries in the UK; 20 years ago there was only one such facility. It is in natural burial that the idea of an unmediated return to the earth that the church has denounced is writ large, with bodies often buried without a coffin and the landscape managed sustainably to preserve its natural beauty.

Rosie Inman-Cook, head of the ANBG and of the Natural Death Centre (NDC), a charity that puts choice, family and respect for the environment at the centre of their funeral advice service, has written inspiringly about the wide range of funeral and burial options available in the UK today. In the words of Leedam Natural Heritage, which operates eight natural burial grounds, these alternatives “offer something gentler”. Indeed, this is all in a context of the rejection of the staid funerals of old, which belonged to a more emotionally buttoned-up past, with British Humanist Association-trained celebrants now conducting more than 7,000 funerals a year.

But more and more people are doing away with formal ceremony and professional celebrant altogether, instead taking the “direct-it-yourself” approach championed by Inman-Cook, or going for direct cremation, which involves no funeral at all. The fact that David Bowie chose this option cemented his image as the ultimate individualist, and the NDC has reported a rise in interest in this possibility.

With adherence to a faith’s doctrines always being on a sliding scale, and the Catholic faithful hardly being immune to changing fashions, the church perceives these new approaches to marking the end of our lives as a threat. But if they are worried about greater freedom and a more individualistic approach to death and burial, scattering of ashes is old news.

Complete Article HERE!