I received news about a friend recently — his seizures have now collided into a diagnosis of glioblastoma. A strong and steady man, trustworthy through and through, reliable, and ever-so-devoted is suddenly facing a life-limiting illness. His life has forever changed; and, so has ours.
Most often we focus on all that the patient must deal with when tragedy strikes. Yet, those of us who care about this person find that with such news, the very nature of our relationship is impacted as well.
A talk with my mother some years ago illustrates how illness changes relationships. I was so touched when she finally asked me how I was doing. For months, we’d been laser-focused on her illnesses. The energy had been going her way; not much coming back around.
I remember first becoming aware of this phenomenon with my dear friend, Trish, at dusk in her living room in Solana Beach, California, the fading backlit light illuminating her. Terminally ill, she also finally asked me how I was. It felt so good to be able to share again as we always had done in the past!
I’m sure it was only because our beloved hospice doctor, Julie, had privately asked me how I was doing. I told her how much I already missed Trish — our deep friendship before her cancer seemed buried. She must’ve dropped a hint. I still cry 18 years later.
It’s no one’s fault. It’s the nature of leave taking — in this case via illness and death. Unbinding and separating from this physical plane demands its own attention. The sick and dying still care; their focus is just elsewhere.
Perhaps it’s a way for us who will remain to begin the adjustment process — while our loved one is still with us. Anticipatory grief.
What can we do during such disruptive and devastating times to help ourselves?
Feel
Feel the confusion, the hurt, the sadness, the shock. Plans smashed to smithereens, the future now unimaginable. Get the support you need to dive deeply into the depths of this darkness; denial and distraction, while offering immediate relief, ultimately only lengthen the process. Grief takes as long as it takes.
Care
Care for ourselves while we care for others. This type of news rocks us to our very core, shocks us and bombards our entire system — psychologically, socially, physically, emotionally, spiritually.
As hard as it might be to do, we must find a way to come up for air, again and again. Take that break, delegate to another, be extra mindful when stepping off curbs and while driving . . .
Gratitude
Gratitude in such circumstances — how? We can at least rally to remember to be grateful for the present, right here, right now. For what we are becoming and being called to do, perhaps in ways we could never have conceived of before.
Carlos Castaneda recommends, “When you need an answer, look over your left shoulder and ask your death.” BJ Miller, palliative care physician extraordinaire and patient himself, in a three-minute PBS brief, observes, “In a way, it’s harder to accept the death of another person than accept your own, especially when you love that person.”
Let’s live our lives alongside anticipatory grief and maximize love, however we can. By feeling our feelings, caring for ourselves and embracing gratitude, we can be of true value.
Amanda and Kaitlin Pettit with their mom and dad when they were young.
By Hillary Ollenberger
Imagine suffering everyday from severe pain and being told by physicians your condition will only get worse with time. What would you do? Would you start researching treatments, looking for anything to take away a little bit of the suffering? Or would you decide that ending your life is the only option?
Medical assistance in dying, also known as MAID, is a controversial topic. With medical assisted dying becoming legal across Canada in 2016, there are still many people who do not agree with it.
But Kaitlin Pettit, who lost her father Randy last year, believes that unless you have been in that position, you do not have the right to judge their decision of choosing medical assisted dying.
Randy Pettit, 60, from London, Ont., was suffering from a terminal illness caused by his diabetes that eventually led to heart, kidney, and liver failure. He passed away on Aug. 9th, 2018 with the help of MAID.
“Growing up, my dad was everything I could have wished for in a father,” says Kaitlin. She remembers how her father would always make her laugh and had the best sense of humour.
“He was an extremely hard worker and made sure my sister and I had everything we ever wanted,” she says.
She recalls some of her favourite memories of her dad, including family trips, watching the Toronto Maple Leaf games, and just sitting and chatting with him.
“My father had complications from diabetes,” says Kaitlin. “He always thought he would beat it, we all did. None of us knew how serious it was, but as time progressed, the reality kicked in.”
Randy chose MAID in June of 2018. According to Alberta Health Services, up until Feb. 28th, 2019, there had been a total of 628 MAID deaths in Alberta; this number continues to grow.
Randy Pettit in his Maple Leaf jersey.
“He had discussed it with my mom first before telling my sister and I,” says Kaitlin. “My father did consider other options before he decided he was going to do the medically assisted dying.”
According to the College of Family Physicians of Canada, Quebec became the first province in Canada to pass legislation to allow “medical aid in dying.” The act defines medical aid in dying as “administration by a physician of medications or substances to an end-of-life patient, at the patient’s request, in order to relieve their suffering by hastening death.”
Kaitlin says her father was initially going to pass away naturally. But his illness was spreading quickly to his organs, and he was suffering.
“At first we all had mixed feelings on his decision. Some days we supported him and other days we were hoping we’d wake up and this would all be a bad dream. As the time got closer and we watched him suffer day in and day out, we all began to put our feelings aside and realize what was in the best interest for him.”-Kaitlin Pettit
For a patient who wishes to receive MAID, there are many ethical deliberations that take place with the physician and patient before moving on to the next step.
Dr. Stefanie Green is a MAID provider who assesses patients and provides medical assisted dying in British Columbia. Green says that for a patient seeking MAID, there is a very robust process that takes place.
Green explains that the patient first needs to be the one to ask for the assisted death. The patient then completes a written form that states they requested the assisted death; this has to be witnessed by two independent people who will not benefit from the death or be someone who provides medical care to them.
After the written request is made and witnessed by others properly, there are then two different assessments that need to be done by two separate independent clinicians.
“So that can be either physicians or nurse practitioners, and those clinicians work separately with the patient to see if they’re medically and legally eligible for the care,” says Green. “Once they both agree separately that that’s the case, then the patient can go ahead and set a date to make a plan for an assisted death. It doesn’t mean they have to do it, but that they’re eligible and empowered to do so.”
Rather than calling it euthanasia, Green says that the proper term is MAID, medical assistance in dying.
“It encompasses two different terminologies. One is what’s technically known as assisted suicide, which is when the patient is given the medication and the patient then takes the medication from the clinician and self administers it,” says Green. “But voluntary euthanasia is when the doctor administers the medications themselves, usually through intravenous.”
Green says the vast majority of cases here in Canada, around 99 per cent, have been voluntary euthanasia with the doctor administering medications.
Green says MAID is not just about the patient being able to control their pain and symptoms.
“Most commonly it’s about a patient finding that they have no more meaning in their life and that they’re no longer able to have autonomous activity and find meaning or joy in their life the way that they used to due to their illness.”
Green explains that for the patient, it’s about independence and autonomy.
In order to be eligible for MAID, the patient must meet five specific criteria: they must be over the age of 18; eligible for funding under Canadian health care; suffering from a grievous and irremediable condition; the request for MAID must be voluntary; and their natural death must be in the foreseeable future.
When it comes to a patient choosing MAID, Green says that someone who is suffering from depression without any other symptoms is not eligible.
“In my opinion, a patient who has acute depression does not have the capacity to make this choice because their decision-making capacity is clouded by the mental health,” says Green. “So no, they could not go ahead. There is a set of criteria that must be met, and if they’re not met then the person who provides their care is liable to be prosecuted.”
In terms of individuals who are against MAID, Green says that from her experience, she sees very few people who disagree with this process. Of the 125 cases she has personally assisted, she can only think of a few where a family member was not in agreement with the patient.
“You can imagine that the people who go through this process with me, by definition, are suffering intolerably. What I do see is a lot of relief, and a lot of sadness that they’re going to lose a loved one.” -Dr. Green
Randy Pettit in the hospital.
Although Green is very passionate about her job, she admits it can be hard. Green says that it takes a lot of time to assess the patient, which also means spending a lot of time getting to know them.
“Quite honestly, I find this work incredibly rewarding,” says Green. “I find that the patients are very grateful for my help and the vast majority of the family members are as well.
So I feel like I’m helping people and I would never help anyone who I don’t believe meets all the criteria.”
Green says that she is comfortable with the work she does and believes she is offering a service for people that is needed and desired.
Although doctors like Green believe MAID is a good option for Canadians, many feel it is unethical and should be illegal.
Alex Schadenberg is the executive director of the Euthanasia Prevention Coalition. Running for over 20 years now, Schadenberg and his team deal with the issues of euthanasia in Canada as well as on an international level.
“I think by the name of the group, you can see I obviously believe that without a question, causing another person’s death, even if they ask for it, is not a good thing.” -Alex Schadenberg.
Schadenberg explains that according to the law, MAID gives power to doctors and nurse practitioners to cause death.
“Not too long ago in Canada, it was considered homicide,” says Schadenberg. “Because we’re not talking about assisted suicide in Canada. We’re talking about euthanasia, lethal injection.”
Schadenberg feels that MAID is a very dangerous concept.
“It’s not about the right to die on their own terms. That’s a misnomer from the beginning,” says Schadenberg. “It’s actually terminology that’s based on a lie. It’s a concept, someone else is killing you. You’ve requested it.”
Schadenberg says three recent reports came up from the Council of Canadian Academics regarding the expansion of euthanasia to children and people with psychiatric conditions.
This is something that is not new to Belgium. With medical assisted dying being legal since 2002, the country also allows medical assisted dying to children. According to the website My Death My Decision, since 2014, competent children can receive euthanasia if they are terminally ill and in great pain.
“This is a very bad concept to be expanding euthanasia to children or to people who have psychiatric conditions,” says Schadenberg. He believes there are a lot of grey areas when it comes to MAID, including Bill C-14, which was put in place on June 17th, 2016.
According to the Government of Canada’s Department of Justice, Bill C-14 allows physicians and nurse practitioners to provide assistance in dying to competent adults who meet the criteria.
Schadenberg feels that Bill C-14 is a sham.
“So what they did is they said Canadians wanted it to be for people with terminal conditions,” says Schadenberg. “So they put that section of the law as, your natural death must be reasonably foreseeable. What does that mean?”
Schadenberg believes that to justify Bill C-14 based on autonomy assumes the patient is not going through great existential, psychological distress.
Dying With Dignity, on the other hand, states that, “although some clinicians interpreted the ‘reasonably foreseeable’ rule to mean a person must be terminally ill, the government specifically stated that that isn’t the case.”
“Caring not Killing” is Schadenberg’s main goal out of all of this. He believes society would be happier if we had good care in place of medically assisted death.
“I don’t think you should ever in society give the power over life and death with somebody else,” says Schadenberg.
Schadenberg is not the only one opposed to MAID. Faith-based hospitals have the right to refuse assisted dying to their patients.
After trying to get into contact with a nurse who works at a faith-based hospital, Leah Janzen, the director of communication from Covenant Health provided a link to their website for answers.
Their policy from CovenantHealth.ca says that:
“While Covenant Health personnel shall neither unnecessarily prolong nor hasten death, the organization nevertheless reaffirms its commitment to provide quality palliative/hospice and end-of-life care, promoting compassionate support for persons in our care and their families.”
Although Covenant Health disagrees with MAID, they still want to give support to their patients who are experiencing any pain or suffering.
They say their goal of care in faith-based hospitals is to reduce suffering and they are “prohibited from participating in any actions of commission or omission that are directly intended to cause death through the deliberate prescribing or administration of a lethal agent.”
Covenant Health could be a good option for patients who are on the fence with MAID but still want to receive support.
But just because someone chooses MAID, does not mean they are necessarily without beliefs or religion.
Kaitlin Pettit says her father was a religious man that prayed a lot.
“My mom’s minister came to our house and visited/prayed with him two days before he passed,” she says.
For her and her family, a place like Covenant Health was not an option.
With his complications from diabetes and his pain increasing, they knew MAID was the right choice.
“He refused to go to hospice and wanted to go on his own terms” she says.
During Randy Pettit’s final days at home, he had nurses and family members check in on him to make sure he was comfortable.
“I know his fight is now over and he is pain-free and that was my only wish for him,” says Kaitlin. “My dad had the privilege to stay at home thanks to his medical team up until the day of his procedure.”
Randy Pettit surrounded by family for a final goodbye.
When it was time for Randy to go to the hospital, the paramedics carried him down the stairs and let him sit outside in the sun for 20 minutes; his illness had prevented him from being out of the house for over a year.
“I will never forget that day — we all arrived in trauma, in Maple Leaf jerseys. We had one last drink to cheers what a great father he has been,” says Kaitlin. “It was quite the send-off and I know he was at peace with his decision.”
“As we all said our goodbyes, he looked at us and said, ‘I hope one day you will all understand why I had to do what I am doing.’”
The last thing Kaitlin said to her father was she loved him and was proud of how brave he was.
The average life expectancy in the United States is now 78.6 years old, according to the most recent data available from the Center for Disease Control (CDC). That’s almost two times what it was a century ago, when it was just 39.
While some might believe we’re on a path toward immortality, at least for now, death remains the one certain rite of passage that arrives for everyone eventually, and Dr. B.J. Miller believes a reckoning is in order.
“It’s high time to review the very common, boring truth that we’re all going to die,” says Miller, a hospice and palliative care physician whose TED Talk, “What Really Matters at the End of Life?” has been viewed more than one million times. The twist: More open conversations about death and dying may in fact help us all get more meaning out of life.
That’s one takeaway from Miller’s new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-written with Shoshana Berger. Part manual for practical stuff (like how to deal with the mountain of paperwork when someone passes) and more heart-centric subjects (like personal legacy and grieving for loved ones), the book is intended as a resource for anyone who will experience its subject matter, aka all of us. Prevention spoke with him about why talking about death talk is on the rise in the wider culture—and why it’s something to start discussing sooner than later.
We’re about to be the oldest, frailest population ever.
Americans have reached a pivotal population point. “We are about to be, in actual terms and relative terms, the oldest, frailest population ever,” says Miller. “Everyone’s going to be living with chronic illness, everyone’s going to be dying from chronic illness, in numbers we’ve never seen before.” Mass migration into retirement centers and care facilities isn’t the solution—but a more open, pragmatic dialog about quality of life and personal desires could be, Miller believes.
So, it’s time to develop a “relationship” with death.
There’s a reason talking to a sick loved one or sitting down to write a condolence letter can be so paralyzing.
“We don’t have the right language, or we worry we’ll say something at the wrong time and scare the person we’re talking to,” Miller says. His solution: “Think about it like a series of conversations, not a long-time talk.”
Discussing death in the abstract with someone when their health is good can also help you understand what they may want, and need, down the line; furthermore, it can empower you to articulate those things for yourself. Will those kinds of talks potentially make you anxious? Of course. But the aim is normalization over time—and that comes with a silver lining. “There’s a secret in the hospice world: Most people who do this kind of work and are around this subject a lot will probably tell you that their lives are better for it,” says Miller.
Listen to your loved ones.
Miller has observed that patients know more about what’s going on with their health than anyone else does—or that they may be letting on. A person might hesitate to bring up their thoughts about dying because it sounds like negative thinking. “The patient themselves is languishing, not knowing how to talk about it, or they don’t want to hurt their family’s feelings,” Miller says.
His advice is to “keep an eye out. The moment dad says, ‘I’m not sure about this treatment,’ or [mom] starts talking a lot about God,” give them the opportunity to follow that thread. You can come at the conversation from a philosophical or spiritual angle, focusing on beliefs or fears, but the point is to listen and hear them out. “When they crack the window, dare to enter it.”
It’s okay—actually, essential—to talk about costs.
Miller has seen caregivers lose their jobs, drain their bank accounts, and undermine the financial stability of their own families. “It’s as though bankrupting yourself for a loved one is the currency to show how much you care, even though everyone in the mix knows the person is going to be dying,” he says. But while you can’t place a monetary value on a life, it’s okay to keep money in the conversation. “Invite this variable into the mix in a conversation with your doctor,” says Miller. “It’s not just the medication or the pacemaker. It’s the cost of living with this thing.”
Furthermore, he adds: “Our healthcare system is wired to extend bodily life at all costs, and as our technologies have improved you can prop up a body practically indefinitely,” Miller says. “As patients—as people—you have to upend the medical system. You have to disrupt it and say ‘no thanks.’ Otherwise you’ll land in ICUs with tubes in every orifice and your family has got to decide how to schedule unplugging you.”
Ask yourself: Can I afford to die?
“Our commercial world, our health and benefits—all of it shows this huge design flaw: Dying is not baked into the plan,” says Miller. “We tried to erase it and it can’t be erased.” The result: a framework, from retirement saving plans to health insurance programs, that don’t include the costs associated with death in the picture. Which means: “You need to save more than you think you do—sock away money.”
Bear in mind what’s covered, too. An experimental treatment could be entirely out of pocket, while hospice is highly subsidized. At the end of the day: “It’s about harm reduction. You’ve got two shitty options. But a less shitty option is better, and that could make an important difference.”
Think out of the box about legacy.
“Selfish people do not tend to die happy because they can’t see the world outside themselves,” Miller says. Learning to do that—to care about the world beyond your presence in it—can help us all become kinder people, but it can also help frame thoughts about what you want to leave behind.
Miller is referring to legacy, which might be the best shot we get at immortality. But while we tend to immediately jump to monetary donations, it can be any mark on the world you’ve left behind. Miller tells a story about a man who used to sit out on his front porch and wave at everyone who went by; when he passed, “the whole neighborhood changed, just because that guy wasn’t out there waving.” The bottom line: “You’re going to affect people, no matter what you do.” So try to leave behind something they will remember with a smile.
After Michael Draper was diagnosed with a rare brain disease, his husband retired to take care of him full-time
Terry Wicks, left, and Michael Draper
By DAVID TAFFET
Michael Draper describes the condition he’s been dealing with for seven years as a “designer disease.” His husband, Terry Wicks, said that when they finally received a diagnoses, “the bottom dropped out of our world.”
Draper went almost two years before receiving a diagnosis of MSA — multiple system atrophy — a progressive neurodegenerative brain disorder that results in death.
Wicks has become his full-time caregiver.
MSA is often misdiagnosed as Parkinson’s Disease, but it seems to be more related to other diseases like PSP and Alzheimer’s characterized by a build up of certain proteins in the brain. Wicks explained that with MSA, the proteins needed to transmit signals from one cell to another seem to crumple and block transmission. As that happens, brain cells die.
Functions that are automatic — maintaining body temperature, swallowing, breathing, eliminating waste — stop working. Speech is affected. Muscle coordination deteriorates. The person with MSA becomes unable to take care of himself.
In 2013, the couple was living in California. Draper was an executive with Yahoo. Wicks was an MRI technician.
Wicks remembers asking his husband one day, “Why are you so clumsy lately?”
After a year of a variety of symptoms presenting themselves and several doctors unable to diagnose what was wrong, they went to Stanford for a diagnosis. After almost a year of visits, their doctor told them that she was waiting for one more symptom to appear. When it did, she confirmed MSA.
Symptoms appear when a person is in his or her 50s. Draper was 52 when they first recognized something was wrong. Those manifestations progress for five to 10 years.
New drugs are being tried to halt progression, but Wicks said his husband’s condition was too advanced for the medications to work. And because it takes so long to diagnose, most people have progressed beyond the point where these medications will help.
Four years ago, both men had to stop working. Draper was unable to work any longer so Wicks, who’s seven years older, retired to take care of him.
They decided to move back to Dallas to be closer to family. Their doctor at Stanford told them Dallas was a perfect choice because a colleague of hers had recently opened an MSA clinic at UT Southwestern, so Draper would receive top medical care.
Wicks made a trip by himself and purchased a house in Garland. He said it was the only time in their 29 years together that he had bought a house without his husband.
Wicks describes himself as a planner. So before leaving, he had planned what they needed in a house. He found one in Garland that fit his needs — a 1980s one-story ranch without any stairs or steep inclines that could be outfitted for their needs.
Among the work needed on the house was a complete bathroom redo. They replaced the tub with a walk-in shower fitted with a large tiled seat and an entrance without a step so that a wheelchair can roll in.
Because someone with MSA eventually has trouble turning around, Wicks found something he calls a pivot disk, sort of a lazy susan for people. From his wheelchair, Draper can stand and Wicks rotates him 180 degrees so he can sit in the shower or on the toilet.
Wicks said a person who needs this level of care loses all personal dignity and they’ve worked to keep Draper as independent as possible as long as possible. When he couldn’t brush his own teeth with a regular brush, they got an electric toothbrush.
Draper joked that he could still use a razor as long as his husband didn’t mind seeing him with slash marks all over his face. An electric razor allows him to continue shaving himself for now.
While they still are able to make a trip to the hair salon to get his hair cut, their hairdresser said he’d come to house once he can’t get out any longer.
Until recently, Draper had been using mostly a walker. Lately, he’s less able to make it around the house that way, and he’s begun relying more on his wheelchair.
Over the last few weeks, Wicks said he’s also begun having to use a catheter in order to urinate.
Draper said he feels guilty that he’s putting his husband through this, but Wicks wouldn’t have it any other way.
To help them deal with their situation, they go to support groups. Spouses taking care of their spouses compare, commiserate and share. That’s how he learned about the pivot disk. Those with the rare disorder that may affect only about 15,000 Americans don’t feel as alone when they get together.
Wicks is also careful about caregiver fatigue. Draper’s parents will take care of him for a week while Wicks takes a trip to the Seattle area where the couple lived for a number of years to help decide if after his husband’s death, he wants to move back there.
Draper encouraged his husband to take the trip. This way, he can participate in making future plans even if he won’t share them himself. He wants to know his husband will be all right and will return to having a life beyond caregiving.
Wicks said he still is able to leave Draper alone for an hour to run out to the store for groceries. As Draper’s condition deteriorates, Wicks said he’ll have to hire someone to come into the house to relieve him so he can do errands.
Caregiving that includes everything from personal care to doing all of the housework is a full-time job, Wicks explained.
“Unless you’ve done it, you have no idea how much it entails,” he said.
In addition to the physical labor, caregiving involves stress. Wicks described what he’s going through as anticipatory grief. Most people don’t grieve until their spouse is gone, and Draper has already outlived original projections for his life expectancy with MSA.
Wicks doesn’t know if the grieving he’s going through now — imagining what life will be like without his husband — will facilitate the grief he’ll feel after his husband’s death or if he’ll experience the loss he’s expecting all over again.
But that anticipatory grief also propels him to make the best life he can for both of them. Draper still has his sense of humor even as communicating grows more difficult. But as they look at each other and tell their story wishing it was headed toward a different ending, there’s a contentment and bliss in their just being together.
Green burials go beyond not polluting or wasting. It’s about people needing and caring for land, conducting life-affirming activities there—including death.
In March, Stiles Najac buried her partner, Souleymane Ouattara, at the Rhinebeck natural cemetary and looked forward to returning with their baby son, Zana, to picnic in the woods near his dad.
Initially, the cemetery in Rhinebeck, New York, appears conventional: businesslike granite squares placed in rows, flags and silk flowers sticking up here and there, grass mowed tight all around.
In one corner, however, a walking path roped off from vehicles invites visitors to stroll into the woods. The area looks wild, but it turns out to be part of the cemetery. A hardwood sign marks it the “Natural Burial Ground.” Cherry, beech, and locust trees stretch tall. Ferns cover the ground. The sweetness of phlox, a purple wildflower, wafts in the air. The lawn portion suddenly looks as contrived as a golf course.
“It’s stark, isn’t it?” Suzanne Kelly, the cemetery’s administrator, says of the contrast. On a spring day, she’s taking us on a tour of the natural section she helped establish in 2014. We step in and she starts describing the deer, wild turkeys, and songbirds that pass through (and also warns us about a poison ivy patch). About 100 yards in, we start to see mounds and a few small fieldstones, some engraved with simple words like “Dear Nature, Thank You, Evelyn.” These 10 acres have been permanently set aside for bodies to be buried without the chemical embalming, nonbiodegradable caskets, or concrete vaults that often accompany the modern American way of death.
Kelly is a thoughtful Gen X academic-turned-garlic-farmer-turned-green-burial-activist-and-expert. She remembers first feeling disconnected from standard funerals when her father died in 2000. She stared at the vinyl carpet covering his deep concrete vault and wondered what all the trappings of her dad’s Catholic service were for.
“The idea of ‘dust to dust’ seemed to be missing,” Kelly remembers. “Even though we were standing at the grave saying those words, we were not living those words.”
After moving back to the Hudson Valley in 2002, Kelly joined Rhinebeck’s cemetery advisory committee. She hoped to create options for people who wanted highly personal burials that connected to the earth. Since then, Kelly has positioned the Rhinebeck natural burial ground at the forefront of a growing international movement to reclaim death by bringing back burial traditions that are more environmentally friendly, more personalized, and more connected to place.
The municipal cemetery in Rhinebeck, New York, offers an area for natural burial. There are now around 225 natural burial grounds in the U.S., up from around 100 just five years ago.
In 2015, Kelly wrote Greening Death, the definitive book on the grassroots efforts behind the movement. “The impetus has been to make death more environmentally minded, less resource-intensive, and less polluting,” she says. “And to tie us back to the land.”
While Stiles Najac buried her partner in March, she found that the Rhinebeck ground gave her an unexpected peace. Najac was nine months pregnant with their son when her partner, Souleymane Ouattara, died by suicide last fall. Six months of bureaucratic complications followed before Najac could lay him to rest. (A medical examiner stored Ouattara’s body in a cooler, a common preservation method before natural burials.) Ouattara was an Ivory Coast native, and his Muslim family wanted Islamic “dust to dust” burial traditions, which typically eschew vaults.
So on a crisp day, Ouattara’s friends and family traversed the burial ground’s muddy lane to a chosen spot in the sun. They lowered his body into the ground using straps.
“It added another level of connection,” Najac says. “People actually returned him to the earth.”
As sunlight flickered through the branches, each mourner had a chance to speak. Ouattara’s uncle had plainly felt the stigma of a family suicide. As the service went on, Najac watched his demeanor change. His nephew was still beloved.
Afterward, though lunch was waiting, everybody lingered. “We were nestled in the trees, which create warmth on even the coldest day,” Najac remembers. “I had that feeling of comfort and acceptance. This was nature’s home.” She plans to bring their exuberant baby son, Zana, to picnic in the woods with friends in the warmer months near his dad.
Since the Civil War, American death rituals have become increasingly elaborate, complete with artificial embalming, concrete vaults, and satin-lined metal caskets. But in 1963, writer Jessica Mitford’s witty exposé of the funeral industry, The American Way of Death, sold every copy the day it was published. (Spoiler: Plenty of material is wasted along the way, but lavishly buried bodies still decay, perhaps even more spectacularly than their pine-boxed counterparts.) The book changed the way Americans thought about funerals and contributed to the growth of cremation rates, from 2% then to more than 50% today.
Still, cremation has limitations in both cost and impact. In 2017, the median cost of an American funeral with viewing and vault was $8,755, according to the National Funeral Directors Association. The median cost of a comparable cremation wasn’t dramatically less, at $6,260.
In the age of climate change, environmental concerns have also prompted more people to cremate. For example, a conventional burial contributes to the production of about 230 pounds of CO2 equivalent, according to Sam Bar, quality assurance and manufacturing engineer at Green Burial Council, a California-based nonprofit that advocates for “environmentally sustainable, natural death care.” But burning isn’t as eco-friendly as many assume. Cremation relies on fossil fuels, produces about 150 pounds of CO2 per body, and releases mercury and other byproducts into the air. Burning one body is equivalent to driving 600 miles. And scattering “cremains” isn’t good for soil.
Then a couple decades ago, activists on both sides of the Atlantic came up with similar alternatives to the $20 billion funeral industry: What if we returned to burial practices that allowed bodies to decompose naturally? And what if lands could be preserved in the process? The author and social innovator Nicholas Albery helped establish “woodland burials” in the United Kingdom in 1994. The first similar but independently generated concept in the United States was Ramsey Creek Preserve, established in South Carolina in 1998. Billy and Kimberley Campbell are proud that it is now a dedicated Conservation Burial Ground, with a permanent land trust agreement. “Instead of wasting land, you’re actually protecting ecologically important land,” Billy says.
Whether next to a regular cemetery or on conserved land, there are now around 218 natural burial grounds in the U.S. , up from around 100 just five years ago. The Green Burial Council certifies about one-third of them. (New Hampshire Funeral Resources, Education & Advocacy keeps a longer list that includes grounds not certified by the Green Burial Council, while other burial sites remain unreported.)
The Green Burial Council holds dual nonprofit status: a 501(c)(6) that certifies grounds and a 501(c)(3) that conducts education and outreach. The organization formed in response to the growing green burial movement and has since become the standard bearer of, and leading authority in, the U.S. movement. That’s no mean feat, given the divisions of purpose that have fragmented the nascent industry in the past. Lee Webster, director of the Green Burial Council’s education and outreach arm, says parts of the early movement were “very elitist,” and there is still a lot of confusion around terminology and standards.
The Green Burial Council currently has three certification standards for green-burial grounds. Certified “hybrid cemeteries” are modern cemeteries that reserve space for burials without embalming or concrete vaults (each year, burials in the U.S. use more than 827,000 gallons of dangerous chemicals and 1.6 million tons of concrete, materials that can be toxic to produce and damaging to the environment). Certified “natural cemeteries” prohibit the use of vaults and toxic chemical embalming. And certified “conservation burial grounds” meet the other requirements of hybrid and natural cemeteries plus establish a land trust that holds a conservation easement, deed restriction, or other legally binding preservation of the land.
Webster spent three years on the Green Burial Council board through 2017 and returned earlier this year to help steer education and outreach. “Because of the myth people have been sold about vaults and caskets, we have to reeducate people on the safety of bodies being buried in the ground without all the furniture,” she says.
The Council updated its standards this spring to better align them with land trust and land management conservation practices. Establishing a land trust for a burial ground lends legitimacy to what’s still a niche movement, in addition to preserving the land and creating a potential revenue stream—crucial at a time when cemetery funding is short (in large part because increasing U.S. cremation rates have cut burial-plot revenues).
As private and municipal-run burial grounds fill up, they can’t keep adding bodies, which means they have to dip into endowments to fund operations, Webster says. It’s not uncommon for a private cemetery to be abandoned when it runs out of money, at which point a nearby municipality often takes over, stretching funds even thinner.
To advocates like Webster, land conversation is the future of green burial. “The way it’s been approached has been to see it from a cemeterian’s point of view rather than a conservation point of view,” she says. “We’re going back now to encourage more land trusts to participate in this and understand how burial can be a conservation strategy.”
“Because of the myth people have been sold about vaults and caskets, we have to reeducate people on the safety of bodies being buried in the ground without all the furniture,” Lee Webster of the Green Burial Council.
Others are going even further. In May, Washington became the first state to legalize body composting as an alternative to cremation or casket burial, a process pioneered by the Seattle-based company Recompose. Other companies offer still more unusual methods of handling human remains: You can have your body mummified, dissolved in water and lye, buried in a pod and planted with a tree, “promessed” (frozen, vibrated into dust, dehydrated, and reintegrated into soil), or put into the ground with a burial suit embroidered with mushroom-spore thread.
Webster believes that body composting and other methods of reintegrating human remains into the environment are “the answer” for urban settings, where burial space is increasingly scarce. So why keep advocating for natural burial grounds like the one in Rhinebeck? It’s the potential they hold for land conservation that’s exciting, she says, and remembrance ceremonies can become new ways to engage with the land.
On the day we visited the Rhinebeck natural burial ground, two people bicycled on the pathway through the woods. Although they’d heard the site was a cemetery, they were using it as they’d use any public park.
“Conservation is about people needing and caring for land,” Webster says. “They’re going to conduct life-affirming activities: Getting married there, baptisms, confirmations, bird-watching, hiking, family picnics—all kinds of things are happening in these spaces because they’re conservation spaces first. That’s the value of it.
“It’s not just that we’re going to put people in the ground without concrete. It’s about the big picture and how it affects people, the way we relate to death but also the way we relate to each other in life.”
There is disagreement within the movement on how best to grow. The values driving green burial suggest there should be more conservation cemeteries, but to meet that standard usually requires starting a new cemetery rather than converting or hybridizing an existing one. That costs a lot of money and requires securing new land and going through a complicated zoning process. To date, the Green Burial Council has certified only six conservation cemeteries in the U.S., compared to 35 hybrid cemeteries.
Cynthia Beal, of the Natural Burial Company in Eugene, Oregon, is a vocal proponent for converting existing cemeteries to natural burial spaces. That averts the zoning issue and provides an educational opportunity for the community.
“If you’re coming into a situation where the cemetery has been abandoned or poorly cared for and you make natural burial its new focus, you’re likely to have neighbors as advocates, happy to see the grounds renewed and the place cared for again,” Beal says. “Every cemetery is unique, telling its own stories of a community’s establishment and growth, and that history is also worthy of stewardship.”
Webster, for her part, is pragmatic about the challenge: While it would be great for more conservation cemeteries to come online, practices at local cemeteries should be improved in the meantime. That would also increase education and access.
“A sense of place is critically important to this,” she says. “I’m not going to [be driven] 300 miles to be buried in a green cemetery. My family is going to associate me with here, where we lived.”
Even in places like Rhinebeck that build at least partly on existing cemetery infrastructure, establishing green-burial sites takes time. Ramsey Creek Preserve was easier, Kimberley Campbell says, because South Carolina didn’t bother regulating. “I called down to the funeral board and got a delightful secretary,” Kimberly remembers. “She said, ‘The cemetery board has shut down. … I think what you are doing sounds marvelous, and there is absolutely nothing to stop you.’”
For Rhinebeck administrator Kelly, using municipal land didn’t require raising the $50,000 in trust for upkeep that is standard in many places. Still, it had to be planned, bid, surveyed, plotted, and certified, which took around five years.
The payoff of a natural burial ground can be big for a community. Gina Walker Fox, a Rhinebeck real estate agent, says she feels more comfortable with death for having bought a plot. (At 61, she recently asked a local quilter to sew her a raw-linen shroud, which she plans to embroider with a symbolic river.) Fox’s plot is near a blackcap raspberry bush she knows her adult children will want to visit.
“That old way—where people pick berries, sit, visit, picnic—that speaks to me,” she says.
Kelly laughs when we ask where she’ll be buried. She hasn’t picked or purchased a spot yet. Even a green-burial activist can feel like she has plenty of time to live.
“Once in a while,” she says, “I come by here and think I should probably get around to getting a plot.”
Mary Klein, center, speaks at a news conference in Washington on April 5, 2018, to urge D.C. officials to educate doctors about the city’s “death with dignity” law.
By Jon Meacham
Jon Meacham is the author of “The Soul of America: The Battle for Our Better Angels.”
Tuesday was to be the day — in the morning, because everything was taken care of. The goodbyes had been said, the tears shed, the coffin handmade. In the spring of 2018, Dick Shannon, a former Silicon Valley engineer with untreatable cancer, took advantage of California’s “death with dignity” law to end his own life once all other medical possibilities had been exhausted.
“My observation about the way people die, at least in America, is they . . . are not allowed the opportunity to be part of the process,” Shannon explained. “For my way of thinking, the part that bothers me just immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” Discussing the ultimate decision with his doctor, Shannon remarked, “It’s hard to fathom. I go to sleep and that’s the end of it. I’ll never know anything different.” He paused, then said simply: “Okay.”
When the day came, Shannon was ready. The end-of-life medical cocktail was mixed in a silver stainless steel cup, and he drank it in front of his loving and tearful family. “I’ve accepted the fact that I’m dying,” he’d said earlier. “There’s nothing I can do to stop it. Planning the final days of my life gives me a sense of participation and satisfaction.” As he prepared to slip away, he told his family, “Just know that I love you — each and every one of you.”
America is becoming ever more like itself when it comes to death. From Walden Pond to Huck Finn’s lighting out for the territory, we’re a nation of individualists, shaped and suffused by self-reliance and a stubborn allegiance to the live-free-or-die motto of the Revolutionary era. With this twist: Baby boomers and their successor generations are insisting on being free to take control of death itself. Innovation, creativity and customization — the hallmarks of our time, an age in which we can run much of our lives from our mobile phones — are now transforming both how we die and the mechanics of remembrance that come afterward.
The coming revolution in death — and Dick Shannon’s story — is laid out with uncommon wisdom in a powerful, new HBO documentary, “Alternate Endings,” which debuts Aug. 14. Only eight states and the District of Columbia have death-with-dignity laws, but three of those states — Hawaii, Maine and New Jersey — have put their statutes on the books within the past year. And 18 other states considered such laws in the 2019 legislative season.
The movement has not attracted the same attention it once did; in the 1990s, Jack “Dr. Death” Kevorkian, the right-to-die advocate, drew considerable public alarm. As the documentary by Perri Peltz and Matthew O’Neill makes clear, the conversation has entered a new and compelling phase now that Americans are thinking about death as something as disintermediated as commuting, dating and shopping.
The United States has a long history of rethinking the rituals of death. Embalming became part of the popular understanding and tradition of death during the Civil War; the task then was to preserve the bodies of dead soldiers so their families could see them one final time. Abraham Lincoln may have done the most to raise the profile of embalming when he chose first to embalm his 11-year-old son and then when his own corpse was embalmed for the long train ride home to Springfield, Ill., after his assassination.
Now the death industry in the United States has evolved with the culture. For many, corporate consolidation has reshaped a funeral home industry, which was once made up almost entirely of local, family-owned companies. (And which, as Jessica Mitford wrote in her 1963 book “The American Way of Death,” unctuously gouged grieving families.) The Internet has disrupted the casket industry with Walmart and others selling directly to families. As “Alternate Endings” reports, there are now green burials (including using a loved one’s ashes to help restore coral reefs), space burials and even drive-through, open-casket viewings.
Once the great gatekeeper of life and death, organized religion, too, is losing its sway. In an era in which friends routinely ordain themselves on the Internet to preside at weddings, the rising numbers of Americans who are “unaffiliated” with any particular faith mean that institutions that once gave shape to life and meaning to death are being gradually supplanted family to family.
The issues raised by Dick Shannon’s story are the most profound. Many religious authorities — notably the Roman Catholic Church — oppose euthanasia (Greek for a “good death”). Such teachings face a generational head wind as more people (and states) move from deferring to institutions to simply making their own decisions. The questions involved are intricate and complex and painful — but it is plain to see that we are witnessing another rite of passage undergoing an irrevocable disruption.
When the Shannons held a “living wake” for friends to say goodbye to Dick, the family hung a banner on the wall: “Life is what you celebrate. All of it. Even its end.” Before passing, Shannon said, “I want it to be on my terms.” Given that death comes for us all, so, too, will many of us have to confront the agonizing decision that he faced with grace.
I of all people should know how to do this. As an ICU nurse, I see every day how agonizing it is for families to make end-of-life care decisions for loved ones who have not made their wishes clearly known. I know what I want. I know what the legal options are. But when I sit down to fill out the papers, I stall.
The form remains incomplete.
All of my experience urges me to act. I think of the anguished adult son trying to decide whether his elderly, unconscious mother would want to live permanently connected to a ventilator.
“Pray for me that she dies before I have to make a decision,” he told me. If she had made her choices known before medical calamity struck, her son would have the peace of mind of carrying out her wishes, one way or another.
I think of another family, where two siblings — one of them a physician — came to blows in the hospital waiting room because they could not agree on whether to stop aggressive treatment for their father, given that his organs were shutting down, one by one.
Of course I want to reduce what’s called the “decisional burden” on my own family by making my choices clear in case I become too sick some day to decide for myself. I just can’t bring myself to translate my well-informed preferences into a legal document such as an advance directive.
I’m not alone. Although advance-care planning has other well-established benefits, including an increased chance that patients will receive the care they want, only one-third of Americans have any sort of advance directive, according to a 2017 study led by researchers at the University of Pennsylvania.
And health-care professionals like myself are no exception. In her 2017 book “Extreme Measures: Finding a Better Path to the End of Life,” physician Jessica Nutik Zitter explained why she avoided the task of translating her medical wishes into a series of yes/no check-boxes that make up many advance directive forms.
“My feelings are too complex, too nuanced, to fit into one little white square,” wrote Zitter, who is board certified in both palliative care and critical-care medicine.
So why is this undertaking so difficult? And how can we all get better at completing this vital task?
The first barrier to advance-care planning is often understanding what is involved. According to G. Kevin Donovan, director of Georgetown University’s Pellegrino Center for Clinical Bioethics, an advance directive is a document that usually includes two separate elements: naming a health-care surrogate and creating a living will.
A health-care surrogate or “proxy” is an adult who is legally empowered to make medical decisions for you when you can’t make them for yourself. Many think they have this base covered when they name a durable power-of-attorney. But a power-of-attorney directive does not automatically allow for decision-making power in the health-care realm.
“They can sell your stock, but they can’t take you off a ventilator,” Donovan said.
A living will offers you a way to say in advance what sorts of medical interventions you would want. For example, the form we offer at our hospital asks whether you would want “artificial nutrition” — meaning liquid nutrients delivered through a tube — if you were expected to die soon.
The problem with these forms is that they rarely capture the complexity of real-life medical decision-making, Donovan said.
In the intensive care unit where I work, we recently had a woman in her 60s whose cancer had come back with a vengeance. She was awake and talking with her family, but her vital signs were deteriorating quickly. We asked the patient and the family what they would want if she could no longer talk and make decisions, and they requested an advance directive form.
When I came to check on them later, I found the patient and family puzzling over the form’s questions, such as what kind of care she would want if she were in a “persistent vegetative state.” The abstract scenarios were almost irrelevant to their immediate situation.
I redirected the conversation to the concrete choices in front of them: Would she want a breathing tube put in her throat in the next 24 hours when her lungs began to fail? Or to have a large IV inserted in her neck to start dialysis after her kidneys stopped working? Thankfully for the family, the patient made her own decisions and shared these with our physicians. She said she didn’t want any “heroic” interventions, and she died 48 hours later, with her family at her bedside.
To me, filling out a living will as a relatively healthy person feels like ordering food for a meal I will eat in 20 years: It seems impossible to predict what I will want in that moment. Is it good to be vague and write, “I want to be kept comfortable?” Or better to be highly specific and say, “I never want to have a feeding tube inserted?”
Because living wills are difficult to translate into real-life decisions, many experts now advise focusing on not only naming the right person as your health-care decision-maker but also talking in depth with that person about what’s important to you.
“The best advanced directive is to name an educated person as your health-care surrogate,” said Douglas Houghton, an acute-care nurse practitioner and director of advanced practice providers at Jackson Health System in Miami. “You need to have a real conversation with that person, and not simply write down a name on a piece of paper that you keep in a filing cabinet.”
Zitter agreed that having conversations with loved ones is vital.
“A written document is a good first step, but it’s not the ultimate goal,” said Zitter, whose work around end-of-life decisions was profiled in the 2016 Netflix documentary, “Extremis.” “For me, the real work happens on Friday nights at the dinner table, when I talk with my family about illness, and death and what I would want at the end of my own life, even when my sons are rolling their eyes.”
But Zitter conceded that a major barrier stands in the way of these conversations: a fear of talking about death.
“Even for me, as a doctor who deals with death every day, I don’t want to think about my own end, it makes me very sad,” she said.
So what can help us all climb over this final existential barrier to end-of-life planning?
I recently witnessed a conversation at work between a palliative care doctor and a patient with severe heart failure, whose adult son and grandchild were at the bedside. The doctor gently reminded the patient that if she could give her preferences now while she was conscious, she would relieve the burden on her son, who otherwise would have to make hard decisions on her behalf. When she finally said she wanted to go home with hospice, her son was visibly relieved.
Framing end-of-life planning as a service to loved ones is a compelling idea. One critical-care doctor I work with suggested we link advance directives to Valentine’s Day. Show your love by sharing what you want. This idea is also what finally motivated me to overcome my own hesitations.
This month, I finally filled out “Five Wishes,” a downloadable document, where I named a health-care proxy and two backups. I wrote I don’t want to artificially prolong my life with machines, such as a ventilator, and if such treatments are started, I want them stopped. I had two neighbors witness the document, making it legally binding in Virginia, and placed it in our kitchen filing cabinet.
Talking about my wishes over dinner with my kids? I’m not there yet. Meanwhile, let me share my advance directive here, so at least my kids can Google it: When the time comes, keep me comfortable, let me go and know that I love you.
