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A Chaplain on How to Talk About the Right to Die and Death With Patients

By Diane Rehm

Martha Kay Nelson has had a long career in hospice work. Rather than choosing hospice work, she believes hospice work chose her. Her training was at Harvard Divinity School. She did a yearlong internship as a hospice chaplain during her graduate work. The year after she graduated, she managed to combine her career as a chaplain with her work in hospice. She is in her mid-forties, with short hair and hazel eyes. Her warm, open face, earnest manner, and easy smile help me understand why she is so good at her work. We sit together in her office at Mission Hospice & Home Care in San Mateo, California.

DIANE: How do you feel about California’s “right to die” law?

MARTHA: Well, I have many feelings, and they could vary depending on the day or the hour. It depends on whom I’m talking to, and what her or his experience is. My overall sense about the law is that people have a right to make their own health-care decisions, whether it’s at the end of life or at any time up to that point. I know people have a hard time having these conversations, particularly early on, before they’re even sick. And then they get sick and it’s crisis time, and those decisions have to be made quickly. The End of Life Option Act to me is part of a spectrum of all those decisions and conversations that come at the end. It’s a new end point on that spectrum.

D: You’ve been in a leadership position here at Mission Hospice, not only learning, but teaching. Tell me what have been the elements of transmitting this information to others.

M: It’s been an interesting learning curve. I think even seasoned hospice professionals have had to adjust to a new option for patients, stepping into that terrain. The elements that have been important in teaching staff members, working with health-care partners, have been to get folks to acknowledge at the outset that this is a challenging topic, this is new terrain, there are profound implications, and not to shy away from it.

Some folks here at Mission Hospice didn’t want to participate, but the majority did, to have their questions answered or share some of their thoughts, their concerns. We’ve done this regularly enough that people felt they could talk freely about the End of Life Option Act. We didn’t want it to be whispered about awkwardly in the corner, that this law is coming and our patients are going to have the right to choose the option. As an agency, we’re not advocates for the law, we’re advocates for our patients, and we won’t abandon them. Having said that, any of our employees, if they’re not comfortable, don’t have to participate. They can opt out if they need to, and they would be fully supported.

D: What kinds of questions did you get from staff? What kinds of issues did they raise?

M: At the outset, a lot of general questions about details of the law, how it works, how are we supposed to communicate with our colleagues around it, what can we say to the patient and what can’t we, those kinds of things. Questions arose about accessibility to the law. If I have patients who are saying they just want to end it all, and they’re saying this a lot, but they’re not specifically asking about the law, then can I bring it up with them or not? We have a policy here at Mission Hospice that we let the patient lead. If a patient is inquiring about his or her options, then we will be there.

That’s one kind of question. Other clinicians have asked about folks who haven’t had the chance to be educated about medical aid in dying, or don’t have access to resources where they might have learned about it. What if it’s something they’d like to avail themselves of ? There’s kind of a social justice question there. There are also questions arising from specific cases. Every case is different.

D: Can you give me an idea of how many patients have actually come forward and asked you about the right to die?

M: We’ve been tracking some of these numbers, and to date, we’ve served around forty-five people since California’s law went into effect, which was a lot more than we anticipated. When back in 2016 we set out to draft our policy and prepare ourselves, we thought maybe we’d have four or five people in the first year. We had twenty-one. And about that same number inquired about the law, but never went all the way through the process. Either they actually died before they had a chance to use the law, or they changed their minds. I would imagine that it was split evenly.

D: Tell me about the process. So a patient comes to you and asks about the process, the law. How do you respond?

M: My initial response as a chaplain would be one of curiosity. I’d be interested in learning more about their thoughts and why they’re asking. It’s a big thing to ask about. Sometimes people are afraid to even inquire. They’re afraid of being shamed or judged. So I’d want to let that person know that I’m glad they’re asking. And then we’d have a conversation, whatever they would wish to say at that time. Next, I would contact the doctor and the rest of my interdisciplinary team members and would let them know the topic had been broached. Then a doctor would probably go and make a direct visit, which would be considered the first formal request, if the decision was made to pursue that course.

We really encourage the other team members to make sure they keep talking to one another—the social worker, the nurse, the spiritual counselor, home health aides, and volunteers who might also be involved. Through a team effort, we would need to have clarity on how much privacy the patient would want. Patients have the right under the law to not tell anyone but the doctors they’re working with, not even family members. Our experience has been that that’s not often the case. Usually there is communication with family.

D: Who makes the initial judgment that the patient has six months or less to live?

M: The attending physician on the case. And if the patient inquires about the law, and his or her doctor says, “I’m not comfortable being involved with this,” that’s one way we might get involved. Or it might be a hospice patient already on our service.

D: I saw in your waiting room a brochure for Death Cafes. Can you tell me about them?

M: The Death Cafe movement started several years ago in England. It’s basically having a conversation over coffee and cakes in a public venue. Anyone is welcome to attend, and the purpose is open-ended. The goal is to talk about death in any way you wish. There does need to be a facilitator, someone who is able to establish ground rules in etiquette so folks aren’t talking over one another. Folks that host them tend to have some level of experience in end-of- life care, in thanatology, but anyone can sign up. I’ve led a couple of them.

D: How successful do you think Death Cafes are as teaching tools, as comforting elements in the whole discussion of death?

M: I think Death Cafes are successful in meeting the needs of folks who already want to talk about death. If you show up at a Death Cafe, there’s something in you that is already ready to speak and to hear what other people are thinking. It can serve as a cross-pollination of ideas and thoughts, and normalization. The cafes meet a kind of thirst that we have in our culture to speak about these things openly and not be afraid. How you get people to Death Cafes is another question. I’ve had some people say they’re offended by that name, or they don’t want to attend a Death Cafe because it sounds morbid.

D: What is the best way to reach people? How do we get the conversation started even before we’re sick?

M: There’s no one best way. It’s about being creative and really getting to know your community. In my family, I’ve been lucky in that we’ve always talked about death openly. I have ongoing conversations now with my father. He’s about to turn eighty-three, and I really value the kinds of discussions and ruminations we have.

It’s wonderful. We’ve started kind of reflecting theologically, talking about, wondering together, what happens after we die. To be able to have that in a father-daughter kind of way. I’m well aware of what a precious opportunity it is to hear his thoughts. As he comes into the “lean and slippered pantaloon” time of his life, as he might say—some of his last chapters— I feel really blessed that he’s willing to discuss it openly.

D: How do you open that discussion for the general public?

M: I think it takes courage and a conscious decision to ask a question of someone in a moment when you feel there’s an opportunity. Someone speaking about her or his health, some decline, or illness, grief, and you ask, “How would you like things to be?” And perhaps even being a bit persistent if you get an initial brush-off, which often happens, but trying again, and saying, “ Really, I would like to know.”

I also think reaching children is important. I think that in our death-denying culture, children are really shielded from all things involved with death. Things happen at the funeral parlor, no longer at home, and we try to protect children in all kinds of ways. But if you don’t allow children who want to be involved in a loved one’s illness or death, I think you’re doing them a disservice. You’re keeping them from something that is integral to life for all of us. The earlier you can start to have those experiences and wonder about them and ask the questions, the more skills you will have as you age to meet them openly.

D: Have you decided what you want for yourself at the end?

M: I have no idea. I do know that I would like to have the right and the option to choose. I understand that even just knowing that the option is available can bring a lot of comfort to people. I haven’t faced a terminal illness that might cause me great physical pain or suffering, or mental or spiritual suffering. There’s one area that gives me pause, which is when folks choose medical aid in dying because they’re used to being in control in their lives. They might not have physical or mental or spiritual suffering, but they want to have personal agency. I think they entirely have the right to do that. But I also believe we’re in a culture that distorts the degree to which we think we’re in control. So on a soul level, on a much deeper level, I wonder, Are we messing with something there? How is it that we’re making such a profound decision from a place of a distorted need for control? And then I think, Well, what do I know about their journey and what they need? Maybe this is the one time they’ve ever made a strong, solid decision for themselves, and who am I to say what it is they need to learn?

D: But isn’t pain, intractable pain and suffering, and the inability to care for oneself, a sufficient reason to respect someone’s decision in terms of his or her final say?

M: Absolutely. I think clinicians have more trouble when they can’t observe visible intractable pain, when they can’t see physical or emotional suffering. It’s harder for clinicians to get their heads and hearts around that. Why is someone making this choice? And so I do a lot of counseling with staff about that, exploring how to meet the needs of the person when we don’t see them suffering, at least not on the surface. And we have to remind ourselves, clinicians need to express those feelings and concerns, so that when they’re dealing with patients directly, they can be respectful and meet them on their own terms.

Complete Article ↪HERE↩!

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There’s No Right Way to Mourn

The ‘grief police’ wield lamentable shaming tactics.

By Sian Beilock

When Kobe Bryant died on Jan. 26, there was an outpouring of grief for the legendary N.B.A. champion. Sports fans placed bouquets of flowers at his high school and held a vigil outside the Staples Center. Shaquille O’Neal, his friend, rival and former Lakers teammate, cried on TV while giving an emotional tribute.

Much of this grieving also took place on social media. His widow, Vanessa Bryant, wrote a powerful tribute on Instagram that was “liked” by more than nine million people. So did Carmelo Anthony and Chris Paul. Grief is no longer private these days, which lets us mourn together. But doing so also allows people to publicly shame how others deal with loss.

“Cancel the games. Cancel the Grammys.,” one person wrote on Twitter. Another criticized those who brought up the rape allegation against Bryant in their commemorations: “Some people have no respect for the dead.” This is part of a broader phenomenon. These “grief police” enforce murky standards of who should be sad, when they’re allowed to be and to what degree. They insist that our grief must be overwhelming and ubiquitous, and for all parts of our lives to be put on hold. This isn’t just problematic in the moment; introducing guilt into the grieving process can negatively impact others’ ability to heal.

Something similar happened at Barnard College where, in December, we were forced to grieve in the media spotlight after one of the newest members of our community, the first-year student Tess Majors, was murdered. I have spent my career researching anxiety and worry, and I was struck by a commonality among people on campus: Amid their feelings of heartbreak, members of our community were worried about how others would perceive their specific form of grieving.

I wasn’t aware of students policing others’ grief, but the perception that this was happening still had an effect, especially given the media attention around the tragedy. One student told me that, in the midst of her deep sorrow, she also felt guilty about feeling eager to write her final papers and was worried she would be judged for not mourning in the “right” way. Another student mentioned that she didn’t know Tess Majors personally and was feeling all right, even looking forward to a long-planned family trip over break, but was going to keep this thought to herself.

I bet some of the N.B.A. players who were eager to play in the wake of Bryant’s death also had mixed feelings — because they are being judged. LeBron James was skewered online for not immediately posting about his friend and mentor: “Why are you not posting Kobe? I never liked LeBron because he is always FULL of himself,” one person wrote on social media.

Public grieving doesn’t happen in a single community where there are shared social norms for how to react, like sitting shiva or walking in a second line. If bereaved players are slow to comment publicly, should we call them out? Must everyone who has ever met Bryant say something in public? When people with vastly different lived experiences come together around a public death, there is no real shared understanding of what is appropriate; this is why the grief police wield such power in calling people out.

Unfortunately, introducing blame into the grieving process causes people to question whether they are dealing with loss the right way and to feel guilty about what they do, say and feel. Recent research has linked guilt in bereavement to a wide range of mental and physical difficulties, including depression. So how, in the age of communal and public mourning, do we grieve and not let the grief police undercut how we feel? How do we continue to perform at our best with heavy hearts?

Everyone responds to death differently, and it’s psychologically healthy to focus on parts of our identity that are not touched by tragedy. It is O.K. for a grieving athlete to play an important game; the same goes for a student who wants to take her finals in the wake of a campus tragedy. Research on resiliency shows quite clearly that people who express (and value) different aspects of who they are tend to be psychologically stronger. For example, their role as an athlete, student or parent provides another outlet to express themselves if they experience a setback or loss in one aspect of their life, or if one of the ways they identify themselves is called into doubt.

Embracing the fullness of our identities in no way represents a lack of respect or a blindness to the gravity of a tragedy. Quite the opposite: It is only through this process that we can effectively take care of one another, including those who have been most affected.

Despite my expertise in this subject, I have had to force myself over the last month to realize that, even in mourning, I have to juggle life as a college president, a researcher, a mother, an athlete and a friend — not only for my own health and mind-set, but also for the well-being of those around me. When the grief police arrive, we need to give ourselves license to express positive emotions and affirm other aspects of ourselves that we value outside of the tragedy. Doing so means we will feel more in control and cope better down the line.

Complete Article ↪HERE↩!

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Anticipatory grief is real.

Here’s how to get help.

By Mary Chaput

I feel like I barely made it through the holidays in one piece. The family was all here; we celebrated with all of our usual traditions and yet I am so incredibly sad. Although my husband is still with us, he has dementia and I could often see confusion and anxiety on his face despite the love and support the family provided. I wish I could just be happy that I still have him next to me instead of feeling sad that things aren’t the way I always imagined they would be.

Grief is a universal response to loss; grief is a normal process. Caregivers often also experience ambiguous grief when, like your husband, the care recipient is physically present but psychologically or emotionally absent. The losses experienced in dementia are incremental and are not generally clearly defined making the mourning process rather complex. Handling these continuous losses over time can be emotionally exhausting.

Anticipatory grief when caring for someone with a terminal illness, such as dementia, is also not uncommon; we are may experience sorrow for the losses we anticipate in the future – plans to travel, plans to grow old together – as well as reconciling the fact that there will be a final physical loss. Caregivers may face fears of their own loss of independence and socialization as well as the fear of being alone. Anticipatory grief can be just as intense as the grief we feel when someone dies and, while not discussed as much as the grief felt after a death, it is a normal process for caregivers.

These types of grief are often difficult to acknowledge but they are a normal response to a caregiver’s situation. The grieving process is fluid, varying from person to person. There is no right way or wrong way to feel.

If anticipatory grief is affecting your day-to-day well-being, reach out to your support network or to a support group. Find a way to express your emotions such as through meditation, journaling or exercise. Make the most of the time you have with your husband and, most importantly, take care of your own emotional and physical health.

Complete Article ↪HERE↩!

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Diagnosed With Dementia, She Documented Her Wishes.

They Said No.

Susan Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. After suffering two brain hemorrhages, Saran signed an advance directive for dementia, a controversial new document that instructs caregivers to withhold hand-feeding and fluids at the end of life. She wears a chain bearing instructions that she not be resuscitated.

By JoNel Aleccia

When she worked on the trading floor of the Chicago Board Options Exchange, long before cellphone calculators, Susan Saran could perform complex math problems in her head. Years later, as one of its top regulators, she was in charge of investigating insider trading deals.

Today, she struggles to remember multiplication tables.

Seven years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She had started forgetting things, losing focus at the job she’d held for three decades. Then tests revealed the grim diagnosis.

“It was absolutely devastating,” said Saran, 64. “It changed everything. My job ended. I was put out on disability. I was told to establish myself in a community before I was unable to care for myself.”

So Saran uprooted herself. She sold her home in 2015 and found what looked like an ideal place: Kendal at Ithaca, a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.”

And now, she’s fighting with that community over her right to determine how she’ll die ― even though she has made her wishes known in writing. Such a fight could ensnare millions of Americans with dementia in coming years.

In 2018, after two brain hemorrhages, Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document created by the group End of Life Choices New York that instructs caregivers to withhold hand-feeding and fluids at the end of life to avoid the worst ravages of the disease.

“It’s not something that I am willing to endure,” she said. “I don’t want my life prolonged beyond the point where I’m participating in life.”

But when Saran submitted the document to Kendal at Ithaca, the New York continuing care retirement community where she has spent more than $500,000 to secure her future, officials there said they could not honor her wishes.

In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.

There’s no provision, the letter said, for “decisions to refuse food and water.”

It’s a cruel quandary for Saran and other Americans who have turned to a crop of dementia directives created in recent years. Even when people document their choices ― while they still have the ability to do so ― there’s no guarantee those instructions will be honored, said Dr. Stanley Terman, a California psychiatrist who advises patients on end-of-life decisions.

“It is, in my opinion, a false sense of security,” Terman said.

That may be especially true for the 2.2 million people who live in long-term care settings in the United States. People with dementia are most likely to die in nursing facilities, according to new research from Duke University and the Veterans Affairs Boston Healthcare System.

“If you’ve got the resources, where you’ve got family and paid caregivers at home, you’re all set,” said Dr. Karl Steinberg, a California geriatrician and hospice physician who has written extensively about dementia directives. If you’re living in a facility, he added, “it’s not going to happen.”

One key question is whether patients with dementia ― or those who fear the disease ― can say in advance that they want oral food and fluids stopped at a certain point, a move that would hasten death through dehydration.

It’s a controversial form of what’s known as VSED ― voluntarily stopping eating and drinking ― a practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, resulting in death within about two weeks.

Many states prohibit the withdrawal of assisted feeding, calling it basic “comfort care” that must be offered. Only one state, Nevada, explicitly recognizes an advance directive that calls for stopping eating and drinking. And that’s via a little-known law that took effect in October.

Critics of such documents, however, say they could lead to forced starvation of incapacitated people. The directives may be biased, reflecting a society prejudiced against age, disability and cognitive change, said Dr. James Wright, medical director of three long-term care facilities in Richmond, Va.

He’s the lead author of a recent white paper advising facilities not to honor dementia directives. Based on his years of clinical experience, Wright said many people with dementia become content with their situation, even when they never thought they would be.

“To enforce an advance directive on someone who may have had a complete turnaround on what they think of a life worth living is unethical and immoral,” Wright said.

The dementia directives published in the past few years are aimed at filling what experts say has been a major gap in advance-care planning: the gradual loss of capacity to make decisions about one’s care.

One version, published in 2018 by Dr. Barak Gaster, a professor of medicine at the University of Washington, has been downloaded 130,000 times after it was mentioned in a New York Times story and continues to be retrieved about 500 times per week.

“This is an issue that people have really thought a lot about,” Gaster said. “They worry about it a lot. They’re so eager and excited to have a structured opportunity to make their wishes known.”

Traditional advance directives focus on rare conditions, such as a persistent vegetative state or permanent coma, Gaster said. “And yet the No. 1 reason a person would lose ability is dementia,” he added.

In addition to Gaster’s document, directives drafted in New York and Washington state have drawn hundreds of users. The aid-in-dying advocacy group Compassion & Choices released a dementia directive this month.

As the U.S. population ages, more people ― and their families ― are grappling with dementia. By 2050, nearly 14 million Americans aged 65 and older may be diagnosed with Alzheimer’s disease.

“We are right now experiencing the very first upswing of the giant wave of dementia that’s heading our way,” Gaster said.

Saran is on the crest of that wave. Divorced, with no close family, she turned to Kendal ― with its 236 independent units and 84-bed health center ― as her final home. During her four years there, she has noticed some decline in her mental clarity.

“Even some of the simplest mathematical problems, like even seven times seven, I can’t think of it now,” Saran said.

Still, she is able to manage her affairs. She cooks her own food and cares for her three cats ― Squeaky, Sweetie and Pirate, a one-eyed tabby. A longtime Buddhist, she often drives to a nearby monastery to practice her faith.

In late summer, Saran invited visitors to her small cottage at Kendal, where tapestries hang on the walls and bookshelves are filled with tomes on religion, death and dying.

Frontotemporal dementia affects about 60,000 people in the U.S., and patients often die within seven to 13 years, but Saran’s disease appears to be progressing more slowly than expected.

“I think I have great capacity,” said Saran, who wears her silver hair long and favors jeans, linen shirts and turquoise jewelry.

She chain-smokes, lighting up the Seneca cigarettes she buys for $3 a pack from a nearby Indian reservation. She thought about quitting but decided it wasn’t worth the effort and continues to indulge her habit. “If you had my diagnosis, wouldn’t you?” she said.

When Saran was hospitalized after her strokes, she suddenly understood what losing her abilities might mean.

“I realized, oh, my God, I might get stuck in a situation where I can’t take any independent action,” she recalled. “I better make sure I have all my paperwork in order.”

She was stunned to learn it might not matter, even after her local lawyer, Chuck Guttman, drafted health care proxy documents and a power of attorney.

“I thought this was it,” she said. “I thought I’d move here and everything was taken care of, everything was settled. And now it’s not.”

Laurie Mante, Kendal’s executive director, declined to comment on Saran’s situation, even when Saran authorized her to do so.

“We recognize the great complexity in balancing our residents’ wishes with what is required of us,” Mante wrote in an email. “We have a dedicated team who works to balance those interests, and, when appropriate, work with our residents and their families to seek alternative paths.”

Saran said no one from Kendal has reached out to discuss an “alternative path.”

Not all dementia directives include instructions about assisted feeding. Gaster said he and his colleagues had “heated conversations” before deciding to leave that issue off their popular document.

Instead, he said, his option helps more people by addressing general goals of care for each stage of the disease. The most important thing, he said, is for people to consider their choices and share their desires with their loved ones.

The debate, Gaster said, boils down to whether assisted feeding is “basic support” or “a medical intervention that can be declined in advance.”

“There’s still a very wide perspective of viewpoints on that,” he said.

Backed by statute and practice, facilities say they are bound to offer food to all residents willing to eat, and to assist with hand-feeding and fluids if a person needs help.

The controversy centers on the definition of those terms.

Wright says late-stage dementia patients who show any interest in food ― a flick of the eyes, grunting or gestures, opening the mouth ― should be fed until they refuse it. Steinberg and others contend the default should be “don’t feed unless they ask for it.”

It’s always going to be “somewhat of a guess,” Wright acknowledged, about whether hand-feeding someone is help ― or force.

“I’ve not seen any guidelines that can faithfully give good, unbiased guidance,” he said. “I feel that I personally can determine when food means something to my patients and when it doesn’t.”

The new crop of dementia directives was inspired, in part, by high-profile cases of dementia patients who were spoon-fed against their apparent wishes. In Oregon and  British Columbia, courts ruled that food and water were basic care that could not be withdrawn.

But so far, there’s been no court case that says a clear advance directive for VSED “may or must be honored,” said Thaddeus Mason Pope, a professor at the Mitchell Hamline School of Law who studies end-of-life decisions.

Pope said he has heard of many people who move out ― or their families move them out ― of long-term care facilities to avoid assisted feeding in the last stages of dementia.

Saran has considered that, too.

“I should probably just leave,” she said, although that would mean losing the nonrefundable investment she’s already made. “I think about that every day.”

But then what? Hospice might be a solution, but only if there’s room when she needs it, she said.

Saran said her situation should be viewed as a cautionary tale. She wishes she’d asked more questions, insisted on answers about exactly how she would die once her dementia progressed.

“I didn’t realize I was signing away my right to self-determination,” she said. “I am appalled that my future demented self takes precedence over my competent current self.”

Complete Article ↪HERE↩!

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Death came a knocking- Ruthie Foster

Death came a knockin’
You know that death came a knockin’ on the mama’s door
Singin’ come on mama, ain’t you ready to go
And my mama stooped down, buckled up her shoes
And she moved on down by the Jordan stream
And then she shout “Hallelujah, done, done my duty, got on my travelin’ shoes”

You know that death came a knockin’ on the sister’s door
Singin’ come on sister, ain’t you ready to go
And my sister stooped down, buckled up her shoes
And she moved on down by the Jordan stream
And then she shout “Hallelujah, done, done my duty, got on my travelin’ shoes”

You know that death came a knockin’ on the brother’s door
Singin’ come on brother, ain’t you ready to go
And my brother stooped down, buckled up his shoes
And he moved on down by the Jordan stream
And then he shout “Hallelujah, done, done my duty, got on my travelin’ shoes”

You know that death came a knockin’ on the neighbor’s door
Singin’ come on neighbor, ain’t you ready to go
And my neighbor stooped down, buckled up his shoes
And he moved on down by the Jordan stream
And then she shout “Hallelujah, done, done my duty, got on my travelin’ shoes”

You know that death came a knockin’ on the preacher’s door
Singin’ come on preacher, ain’t you ready to go
And my preacher stooped down, buckled up her shoes
And she moved on down by the Jordan stream
And then she shout “Hallelujah, done, done my duty, got on my travelin’ shoes”

You know that death came a knockin’ on my front door
Singin’ come on sister, ain’t you ready to go
So I stooped down, buckled my shoes
And I move on down by the Jordan stream
And then I shout “Hallelujah, done, done my duty, got on my travelin’ shoes”

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Why ceremony matters

By Lois Heckman

Creating ceremonies is what I do, and every once in a while it’s good to stop and remember why. To my way of thinking, there are three really big transitions in life: birth, death and marriage. Every culture and religion, all around the world, has different ways to honor these milestones. Momentous occasions are honored and celebrated in diverse ways, almost always involve ceremony; rites of passage.

Elizabeth Gilbert wrote: “Ceremony is essential to humans: It’s a circle that we draw around important events to separate the momentous from the ordinary. And ritual is a sort of magical safety harness that guides us from one stage of our lives into the next, making sure we don’t stumble or lose ourselves along the way.”

That really nails it. I probably don’t have to even say anymore. But naturally I will!

Besides those three big ones, other life changing transitions include coming of age, sexual identity, and any major disruption in relationships— especially divorce. All are deserving of recognition, in small or big ways. We also have ceremonies for graduation or receiving awards and even retirement.

Each tradition has its own way to express the meaning, with specific rituals, readings or actions. And let’s remember that cultures and traditions evolve, changing with the times, or struggling to do so.

Perhaps you have heard of one of the most unusual coming-of-age ceremonies. It takes place in a remote island in the South Pacific, where boys risk their lives jumping head-first from a 90-foot tall wooden tower with nothing but vines wrapped around their ankles. Yes, ceremony can take many forms.

While I specialize in honoring weddings (what I think of as the No. 3 spot in the all-important life changes challenge) I also officiate funerals, baby welcomings and occasionally other types of events. I recently performed a lovely renewal of vows, and I have also created interesting anniversary celebrations, blessing of animals, and community events. I even create secular confirmation programs and ceremonies.

A funeral or memorial service is another important milestone. Sometimes people choose to do something a few weeks or more after the person has died. It can be somewhat more uplifting, and also allows people time to make plans to travel. These are often called a “celebration of life” rather than a funeral. But some traditions do not allow for this. Devout Jews and Muslims are required to bury almost immediately after the death. However, this still wouldn’t preclude a celebration of the person at a later date, after the burial.

I know there are times when families skip a formal ceremony for the dead. The reasons for this are varied. Sometimes it is a discomfort with religion, especially if the deceased had given up on her or his faith, or the family has a mixture of beliefs and they are unsure how to handle that.

There could be costs that make it prohibitive or seem wasteful to the survivors.

There might be family dysfunction and no one wants to come together, especially if it feels like you are honoring someone who was not a good person. We know how people always say nice things about the dead, even if they don’t deserve it. These are tricky issues, but if you loved the person who has died, even without a formal ceremony, it is worthwhile to take some special time to honor that loss. As we often hear (and rightly so) — a funeral is for the living

Weddings are entirely different. Even elopements deserve to be properly honored. A wedding is a joyful time and the ceremony is meant to move everyone through this transition. The wedding ceremony honors the partner’s separate lives, their past, and the journey that led them to one another, then marks the moment of commitment, and takes them into their future as they walk down the aisle, beginning a new path, side by side.

Even for couples who have been together for years, it is still important. Getting married is meaningful at any time or stage in one’s life. There are so many good reasons to marry, including legal rights and science has shown that a healthy marriage promotes better and longer lives. And let’s remember if the couple getting married has children, it is also an important moment for them.

Big changes have always deserved recognition, and I believe they always will. I hope everyone realizes the importance of taking the time to do just that, in whatever way works for you. And of course, I’m happy to help if you need me.

Complete Article ↪HERE↩!

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Dates With Death

When My Time Comes

Diane Rehm poses for a portrait at her home in January. After more than three decades and thousands of programs, she’s stepping away from the broadcast microphone.

By Amy Kepferle

“My mother begged to die,” Diane Rehm writes in the preface of her new book, When My Time Comes: Conversations about Whether Those Who Are Dying Should Have the Right to Determine When Life Should End.

“There was no hope of recovery,” she continues. “There was nothing more they could do to ease her pain or to keep her comfortable. She died suffering.”

Rehm, a beloved National Public Radio talk show host and bestselling author, wondered why she’d had to watch her mother endure the horrific effects of non-alcohol-related cirrhosis for so long, and why she didn’t have the right to choose when she’d had enough.

The subject again became personal in 2014 when her husband of 55 years, John Rehm, decided to end his life when the side effects of Parkinson’s disease became overwhelming. He couldn’t use his hands, could no longer feed himself or use the bathroom on his own, and slept for most of the day.

“Because John could not receive medical aid in dying, he had to starve himself and go without medication for 10 days, until he died,” she relates during a chapter focusing on an interview with palliative care physician, internist and geriatrician Christina Puchalski. “I as his wife could do nothing but watch him suffer.”

Puchalski’s take on Rehm’s story is an interesting one. Although she has plenty of compassion for those who are facing their final journey, she has concern that in states where assisted suicide is legal—like Washington, Oregon, Maine, Vermont, California, New Jersey, and Colorado—people might be too quick to seek medical aid to quicken their deaths. She believes palliative care and hospice care can help with pain and symptom management, and can also be done with dignity.

“Are we giving a message that when you get to that point, there’s not a lot of opportunity for meaning and purpose and joy?” Puchalski asks.

At 83 years old, Rehm is a clear proponent of the right-to-die movement. But in When My Time Comes, she uses her interviewing prowess to explore the topic in ways that go beyond a simple “yes” or “no.” She questions terminal cancer patients—one of whom moved to Oregon so she’d be able to end her life on her own terms—and widowed spouses, doctors, death educators, reverends and Roman Catholic priests, constitutional law professors, attorneys and politicians for their opinions.

It’s heady reading, especially when hearing from those who know they’re running out of time. But it’s also a reminder that life is fleeting, and that it’s better to let your family and loved ones know what you want before its final chapter.

At the end of the book, Rehm even talks to her grandson, asking him to record their conversation on his iPhone for posterity. She then tells him that if she’s terminally ill and there is no reasonable expectation of her recovery from mental or physical disability, to let her die and not be kept alive by artificial means and heroic measures.

During “A Conversation with Diane Rehm” Tues., Feb. 11 at Sehome High School, the retired radio personality will be in conversation with local author Phyllis Shacter, who—like Rehm—watched her spouse choose to die via Voluntary Stopping Eating and Drinking (VSED) rather than live into the late stages of Alzheimer’s. The discussion is sure to be a fascinating one, and may help give attendees a clearer look at the bigger picture.

Complete Article ↪HERE↩!