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The Art of Dying Well

It’s been nearly two years since Colorado passed the End-of-Life Options Act. How has the controversial law affected Centennial Staters, and how, exactly, does one plan for a good death?

By

Merely Mortals

This is a story about death.

About how we in the United States—and maybe to a slightly lesser degree, here in Colorado and the West—tend to separate ourselves, emotionally and physically, from both the ugliness and the beauty of our inevitable ends. We don’t like to think about dying. We don’t like to deal with dying. And we certainly don’t like to talk about dying. Maybe that’s because acknowledging that human bodies are ephemeral short-circuits American brains groomed to (illogically) hope for a different outcome. Perhaps it’s also because the moment death becomes part of the public discourse, as it has in the Centennial State over the past several years, things can get uncomfortably personal and wildly contentious.

“As a society, we don’t do a great job of talking about being mortal. My secret hope is that this [new law] prompts talks about all options with dying.”

When Coloradans (with an assist from Compassion & Choices, a national nonprofit committed to expanding end-of-life options) got Proposition 106, aka the Colorado End-of-Life Options Act, on the ballot in 2016, there was plenty of pushback—from the Archdiocese of Denver, advocacy groups for the disabled, hospice directors, hospital administrators, and more physicians than one might think. But on November 8, 64.9 percent of voters OK’d the access-to-medical-aid-in-dying measure, making Colorado the fifth jurisdiction to approve the practice. (Oregon, California, Montana, Washington, Hawaii, Vermont, and Washington, D.C., have or are planning to enact similar laws.) Not everyone was happy, but if there’s one thing both opponents and supporters of the legislation can (mostly) agree on, it’s that the surrounding debate at least got people thinking about a very important part of life: death.

“As a society, we don’t do a great job of talking about being mortal,” says Dr. Dan Handel, a palliative medicine physician and the director of the medical-aid-in-dying service at Denver Health. “My secret hope is that this [new law] prompts talks about all options with dying.” We want to help get those conversations started. In the following pages, we explore everything from how to access the rights afforded in the Colorado End-of-Life Options Act to how we should reshape the ways we think about, plan for, and manage death. Why? “We’re all going to die,” says Dr. Cory Carroll, a Fort Collins family practice physician. “But in America, we have no idea what death is.” Our goal is to help you plan for a good death—whatever that means to you.

Death’s Having a Moment

Colorado’s end-of-life options legislation isn’t the only way in which Coloradans are taking charge of their own deaths. Some Centennial Staters have begun contemplating their ends with the help of death doulas. —Meghan Rabbitt

As the nation’s baby boomers age, our country is approaching a new milestone: more gravestones. Over the next few decades, deaths in America are projected to hit a historic high—more than 3.6 million by 2037, which is one million more RIPs than in 2015, according to the U.S. Census Bureau. Here in Colorado, home to Boulder’s Conscious Dying Institute, there are a growing number of “death doulas” trained to help us cross over on our own terms.

Death doulas offer planning and emotional support to the dying and their loved ones, and since 2013, the Conscious Dying Institute has trained more than 750. Unlike doctors, nurses, hospice workers, and other palliative-care practitioners who treat the dying, death doulas don’t play a medical role. In much the same way that birth doulas help pregnant women develop and stick to birth plans, death doulas help their clients come up with arrangements for how they want to exit this life. That might mean talking about what projects feel important to finish (like writing that book) or helping someone make amends with estranged family members or friends or determining how much medication someone wants administered at the end. “When people are dying, they want to be heard,” says Nicole Matarazzo, a Boulder-based death doula. “If a doula is present, she’ll be able to fully show up for the person who’s dying—and model that presence for family members.”

Over the past year, the Conscious Dying Institute has seen a noticeable jump in the number of Coloradans using its directory of doulas and inquiring about training. When she started working in end-of-life care in 1998, founder Tarron Estes (pictured) says no one had heard of death doulas. Now she’s getting roughly 25 calls a week. “More people are getting comfortable talking about death,” Estes says. “In cities like Denver, there’s a willingness to talk about topics that are taboo in other areas of the country.” Medical aid in dying is, of course, a prime example.

That embrace of the end might be just another part of what is becoming known as the “death-positive movement.” More than 314,000 people have downloaded a free starter packet from the Conversation Project, a nonprofit that gets people talking about their end-of-life wishes. And more than 6,700 “death cafes,” where people gather to talk about death over tea and cake, have popped up around the nation, including several in Colorado. Ready to make a date with death? The Denver Metro Death Cafe’s next meeting is on October 20.

Knocking On A Death Doula’s Door

What to look for in an end-of-life guide.

1. Ask to see a certificate of education and research the organization that provided the doula’s training. Look for curricula that involve at least some in-person instruction. For example, the Conscious Dying Institute’s eight-day, on-site training portion includes lectures, writing exercises, demonstrations, and partner practices. It’s also split into a three-day session and a five-day session, with a 10-week internship requirement between each on-site phase.

2. Compare fees. Death doulas in Colorado charge about $25 to $125 an hour and may offer a sliding scale based on their clients’ financial means.

3. Pay attention to the doula’s listening skills. The last thing you want as you prepare to cross over is someone who hasn’t been hearing you all along.

Ink Your Legacy

If a good death includes making sure your family is cared for, one of the greatest favors you can do for your loved ones is to provide a clear path to all of your worldly possessions. Putting in the time—and paperwork—to plan for the dissemination of all your stuff can save your family months of headaches, heartaches, and contentious probate battles. Not sure what kind of estate planning documents you need? We spoke with Kevin Millard, a Denver-based estate planning attorney, to help you get started.

If you don’t you care about who gets your stuff…
Great; then you probably don’t need a will. If you don’t have a will, your stuff—cars, jewelry, artwork, etc.—goes to your closest relative(s) under what are known as “intestate succession laws” (the laws that govern how your stuff is divided after your death). The state maintains very specific equations for different scenarios. For instance, if you die with a spouse and children from a previous relationship, your spouse gets the first $150,000 of your intestate property plus half of the remaining balance, and the descendants get everything else. Or, if you die with a spouse and living parents, your partner gets the first $300,000 of your intestate property and three-quarters of anything over that. Your parents get

If you do care about who gets your stuff and some of your “stuff” is minor children…
At the very least, you need a guardian appointment document to determine who will care for your children after your death. Physical custody is different from managing any money you might have set aside for your children. You can name one person to manage the money and another to actually care for your children. Also, if your selected guardian doesn’t live where you do, he or she gets to decide whether or not your kids have to move.

If your most valuable stuff is not really “stuff” at all, but more like life insurance policies, 401(k) plans, bank accounts, etc…
Then you’ve probably already designated who gets what by appointing a beneficiary for those things. Anything with a beneficiary—life insurance policies, payable-upon-death bank accounts, retirement plans, or property held in joint tenancy (e.g., your house)—does not get distributed according to intestate succession laws (the laws that govern how your stuff is divided after your death if you don’t have a will). It goes to the listed beneficiary. However, you might want to consider also designating a durable financial power of attorney to manage all of your accounts in the event you become incapacitated before you die. Ditto for a medical power of attorney.

If your stuff is worth millions…
In addition to a will, you should consider a trust. This can protect your estate from being included in lawsuits if you’re sued, and it can also ease some of the estate tax burden on your heirs. But if you’re worth millions, then you probably already have people on retainer who’ve told you this.

If your stuff isn’t worth millions…
You need a will if you want to make life easier for your heirs. (In Colorado, any estate valued at more than $65,000 must go through probate court—a process that takes many months to finalize because you cannot close an estate here until six months after a death certificate has been issued, which can take several days or even weeks.) The general rule in Colorado is that a will must be signed by two witnesses to be valid. If you go through the trouble of having it notarized, it becomes a self-proving will, which means the court doesn’t have to track down the witnesses to certify its validity. You can also handwrite and sign your will; that’s known as a holographic will and does not require witnesses—but it does come with a lot of hand cramps.

My Father’s Final Gift

When it came to preparing for the end of his life, my father planned for the worst, knowing that would be best for me. —Jerilyn Forsythe

It was June in Arizona, and it was hot inside my dad’s kitchen. The whole place smelled musty, the way old cabins do, and I watched as a swath of sunlight coming through the window illuminated lazy plumes of dust. My thoughts felt as clouded and untethered as the drifting specks. I had flown in from Denver the day before and driven more than 100 miles from Phoenix to collect some of my father’s things and bring them to the hospital, where he lay in a medically induced coma.

It had all happened so fast. I’d received a midnight call from a neurosurgeon in Phoenix—the same one who had done a fairly routine surgery to mend a break in my dad’s cervical spine a few weeks earlier. Somehow, the physician said, my father had accidentally undone the surgery, leaving two screws and a metal plate floating in his neck. The doctor explained that he had operated emergently on my dad, who would be under a heavy fentanyl drip—and a halo—until he stabilized.

Although my parents had been divorced since I was two years old, my mother was there to help me that afternoon in Dad’s cabin. Between coaching me through decisions like which of his T-shirts to pack and whether or not I should bring his reading glasses, she happened upon a navy blue three-ring binder, with a cover page that read “Last Will and Testament, Power of Attorney & Living Will for Larry Forsythe,” in his bedroom.

He had never told me about the binder, but my name graced nearly every page within it. On a durable financial power of attorney. On a durable medical power of attorney. On a living will. And on his last will and testament. My typically nonconformist dad had prepared a collection of legal files that would become my bible in the ensuing months.

During the roughly 16 weeks he was hospitalized, I would reread, reference, fax, scan, copy, and email those documents—particularly the powers of attorney—countless times. I also thought, on nearly as many occasions, how fortunate I was that my dad, who probably struggled to pay for a law firm to draw up the papers, had done so just a year before he was unexpectedly admitted to the hospital. Without his wishes committed to paper, I know I would not have been able to fully and confidently make decisions on his behalf. But, navy blue binder in hand, I was empowered to speak with authority to doctors, nurses, bank executives, and even the cable company, which would not have stopped the monthly payments that were dwindling his already heartbreakingly low bank account had I not been designated his financial power of attorney.

I always thought that having a sick or dying loved one meant hospital visits and flowers and tears—all of which is true—but I spent far more time on the phone with medical professionals, financial institutions, and social workers than I did crying. I imagine all of that strife would have been magnified dramatically had we not found that binder.

My dad died a year ago this month. His passing brought more challenges for me, but for a long time after, I silently thanked him for having the foresight to visit that estate planning law firm, for considering what I’d go through when he was no longer here. It was one of the last—and best—gifts he ever gave me.

Process Oriented

Navigating the myriad steps to legally access medical-aid-in-dying drugs can be an arduous undertaking already. Some obstacles, though, are making it even more frustrating for terminally ill patients and their families.

Step No. 1: Determine Eligibility

For a person to be eligible to receive care under the law, he or she must be 18 years or older; a resident of Colorado; terminally ill with six months or less to live; acting voluntarily; mentally capable of making medical decisions; and physically able to self-administer and ingest the lethal medications. All of these requirements must be documented by the patient and confirmed by the patient’s physician, who must agree to prescribe the medication.

Procedural Glitch: Because the law allows individual physicians to opt out of prescribing medical-aid-in-dying drugs for any reason and because some hospital systems and hospices have—in a potentially illegal move—decided not to allow their doctors to prescribe the meds, it is sometimes difficult for patients to find physicians willing to assist them.

Step No. 2: Present Oral And Written Requests

An individual must ask his or her physician for access to a medical-aid-in-dying prescription a total of three times. Two of the requests must be oral, in person, and separated by 15 days. The third must be written and comply with the conditions set in the law (signed and dated by the patient; signed by two witnesses who attest that the patient is mentally capable of making medical decisions, acting voluntarily, and not being coerced by anyone).
Procedural Glitch: Although mandatory waiting periods are required in all jurisdictions with medical-aid-in-dying laws, these requirements are especially challenging for patients in small towns or rural areas, where there might not be a doctor willing to participate for 100 miles. For terminally ill patients, making two long road trips to present oral requests can be next to impossible.

Step No. 3: Get A Referral To A Consulting Physician

The law requires that once a patient’s attending physician has received the appropriate requests and determined the patient has a terminal illness with a prognosis of less than six months to live, the doctor must refer the patient to another physician, who must agree with the diagnosis and prognosis as well as confirm that the patient is mentally capable, acting voluntarily, and not being coerced.

Procedural Glitch: Once again, difficulties with finding a willing physician can cause lengthy wait times.

Step No. 4: Fill The Prescription At A Pharmacy

Colorado’s medical-aid-in-dying law doesn’t stipulate which drug a physician must prescribe. There are multiple options, which your doctor should discuss with you. Depending on your insurance coverage (Medicare, Medicaid, and many insurance companies do not cover the drugs), as well as which hospital system your doctor works in, getting the medication can be as simple as filling a script for anything else.

Procedural Glitch: Not every hospital system will allow its on-site pharmacies to fill the prescriptions—HealthOne, for example, doesn’t. Corporate pharmacies, like Walgreens, and grocery-store-based pharmacies often will not fill or do not have the capability to fill the prescriptions. What’s more, Colorado pharmacists are able to opt out of filling the prescription for moral or religious reasons. That leaves doctors and patients in search of places to obtain the drugs once all of the other requirements have been fulfilled.

Step No. 5: Self-Administer The Medications

Although the time and place are mostly up to the patient, if he or she does decide to take the life-ending drugs, he or she must be physically able to do so independent of anyone else. Physical capability is something patients must consider, especially if their conditions are progressing quickly and could ultimately render them incapable of, for example, swallowing the medications.

Procedural Glitch: Depending on the drug that is prescribed and the pharmacy that fills it, patients and/or their families are sometimes put in the position of having to prepare the medication before it can be administered. Breaking open 100 tiny pill capsules and pouring the powder into a liquid can be taxing even under less stressful circumstances.

Step No. 6: Wait For The End

In most cases, medical-aid-in-dying patients fall asleep within minutes of drinking the medication and die within one to three hours. The law encourages doctors to tell their patients to have someone present when they ingest the lethal drugs.

Procedural Glitch: Although most doctors who prescribe the medication do not participate in the death, it is worth asking your physician or your hospice care organization in advance about what to do in the minutes immediately after your loved one has died at home, as 78.6 percent of Coloradans who received prescriptions for life-ending meds under the law and subsequently died (whether they ingested the drugs or not) did in 2017. Someone with the correct credentials will need to pronounce death and fill out the form necessary for a death certificate (cause of death is the underlying terminal illness, not death by suicide) before a funeral home can pick up the body.

Who’s In & Who’s Out?

A short breakdown of metro-area hospitals’ and health systems’ stances.

Completely Out
SCL Health
Centura Health
VA Eastern
Colorado Health Care System
Craig Hospital

In, With Caveats
HealthOne
Boulder Community Health

All In
Denver Health
UCHealth
Kaiser Permanente Colorado

Alternative Endings

An Oregon nonprofit is Colorado’s best aid-in-dying resource.

Although Oregon’s Compassion & Choices is best known here as the organization that helped push Proposition 106 onto Colorado’s November 2016 ballot, the nation’s oldest end-of-life-options nonprofit didn’t abandon the Centennial State after the initiative passed. “First, we help states enact the laws,” says Compassion & Choices’ Kat West, “then we stick around to help with implementation and make sure it’s successful.”

In Colorado, the rollout has been fairly fluid. Perfect? Certainly not. Fortunately, Compassion & Choices has been trying to smooth some of the wrinkles in the system. The biggest help so far might be its website. The nonprofit keeps its online content updated with everything a Coloradan needs to know about the state’s End-of-Life Options Act. Of particular note: the Find Care tool, which lists clinics and health systems that have adopted supportive policies, since finding participating physicians, hospitals, and pharmacies is still challenging. “Patients don’t have the time or energy to figure this out on their own,” West says. “We do it for them.”

Hospice Hurdles

Why some local hospices aren’t as involved in Colorado’s aid-in-dying process as you’d expect.

Despite what you might have heard, hospice is not a place where one goes to be euthanized. “That misconception is out there,” says Nate Lamkin, president of Pathways hospice in Northern Colorado. “We don’t want to perpetuate the thought that we’re in the business of putting people down. That’s not what we do.” That long-standing myth of hospice care is, in part, why many Colorado hospices have declined—potentially in violation of state law—to fully participate in the End-of-Life Options Act.

By and large, the mission of hospice—which is not necessarily a place, but a palliative approach to managing life-limiting illness—has always been to relieve patient suffering and to enhance quality of life without hastening or postponing death, Lamkin explains. “This law kind of goes in opposition to that ethos,” he says. To that end, like many other hospices, Pathways has taken a stance of neutrality: Pathways physicians cannot prescribe the life-ending medication, but the staff will support their patients—by attending deaths, by helping with documentation—who choose the option. “We are not participating by not prescribing,” Lamkin says. “But it is the law of the land, and we fully support those who choose medical aid in dying.”

Pathways is not alone in its abridged participation. Other large Front Range hospice care providers, like the Denver Hospice, have also either taken an arm’s-length stance on the practice or opted out entirely. End-of-life options advocacy nonprofit Compassion & Choices regards this as willful noncompliance, which could leave hospice providers exposed to legal action, especially considering that 92.9 percent of Colorado’s patients who died following the reception of a prescription for aid-in-dying meds in 2017 were using hospice care to ameliorate symptoms and make their deaths as comfortable as possible. But, says Compassion & Choices spokesperson Jessie Koerner, when hospices abstain from fully supporting medical aid in dying, it strips away Coloradans’ rights—rights to which the terminally ill are legally entitled.

 

Filling More Than Just Prescriptions

After spending years at a chain pharmacy, Denverite Dan Scales opened his own shop in Uptown so he could better serve his customers. 5280 spoke with him about being one of the few pharmacists in Colorado meeting the needs of medical-aid-in-dying patients.

5280: Of the roughly 70 medical-aid-in-dying prescriptions written in Colorado in 2017, Scales Pharmacy filled approximately 22 of them. Why so many?
Dan Scales: As a pharmacist, you have no obligation to fill a script that’s against your moral code. So there are many pharmacists who won’t fill the drugs. Also, many chain pharmacies—like Walgreens—don’t mix compounds, which means they can’t make the drug cocktail a lot of physicians prescribe. That leaves independent pharmacies like ours.

You don’t have any objections to the state’s End-of-Life Options Act?
I really believe we kinda drop the ball at the end of life. We do a poor job of allowing people to pass with dignity. I won’t lie, though: After filling the first couple of prescriptions, I did feel like I helped kill that person. I needed a drink. But talking with the families after helps.

You follow up with your patients’ families?
Yes. We ask them to call us after their loved one has passed. We want to know how it went, how the drugs worked, how long it took, was everything peaceful? I’d say about 30 percent call us to offer feedback. It helps us know how to better help the next person. You have to understand, this is not a normal prescription; we talk with these people a lot before we even hand them the drugs. We get to know them.

If you could change one thing about the process, what would it be?
It’s frustrating that there’s not more pharmacy participation in our state. We’re having to mail medications to the Western Slope because people can’t find the services they need.

Final Destination

She couldn’t travel with him this time, but a Lakewood woman supported her husband’s decision to go anyway.

They met online, way back in the fuzzy dial-up days of 1999. J and Susan* weren’t old, exactly, but at 50 and 49, respectively, they had both previously been married. They quickly learned they had a lot in common. They were both introverts. Each had an interest in photography. And they loved to travel, especially to far-flung places, like Antarctica. After about two years of dating, they got married in a courthouse in Denver. For the next 17 years, they saw the world together and were, Susan says, “a really great team.”

The team’s toughest test began in fall 2017. Susan says she should’ve known something was wrong when she asked J if he wanted to go on an Asia-Pacific cruise and he balked. Upon reflection, Susan realized J likely hadn’t been feeling well. “That hesitation was a clue,” she says. The diagnosis, which came in January 2018, was a devastating one: stage 3-plus esophageal cancer. It was, as Susan puts it, “a cancer with no happy ending.”

It would also be, Susan knew, a terribly difficult situation for J to manage. He had never been able to stand not being healthy; she was certain he wouldn’t tolerate being truly sick. And esophageal cancer makes one very, very sick. The tumors make swallowing food difficult, if not impossible. As a result, some sufferers lose weight at an uncontrollable clip. They can also experience chest pain and nasty bouts of acid reflux. J knew he was dying—and that he didn’t want to go on living if he could no longer shower or go to the bathroom alone or be reasonably mobile. He broached the topic of medical aid in dying with Susan in February. “Honestly, I had already thought about it,” she says, “so I told him I thought it was a great idea.”

As a Kaiser Permanente Colorado patient, J had access to—and full coverage for—the life-ending drugs. The process, Susan says, was lengthy but seamless. J got a prescription for secobarbital and pre-dose meds; they arrived by courier to their house in April. Having the drugs in hand gave J some peace. He wasn’t quite ready, but he knew he was in control of his own death. He would know it was time when he began to feel like his throat would be too tight to swallow the drugs—or when he became unable to care for himself.

That time came in late June. He was weakening, and he knew it. Having decided on a date, J had one last steak dinner with his family on the night before his death. “He was actually able to get a few bites down,” Susan says. “He was also able to have a nice, not-too-teary goodbye with his stepchildren. It was wonderful.”

Although she was immeasurably sad when she woke the next day, Susan says seeing the relief on J’s face that morning reinforced for her why medical-aid-in-dying laws are so important. She knew it was unequivocally the right decision for him—a solo trip into the unknown, but he was ready for it. At noon on June 25, J sat down on the couch and drank the secobarbital mixed with orange juice. “Then he hugged me,” Susan says, “and he said, ‘It’s working’ and fell asleep one minute later. It was really perfect. He did not suffer. It was all just like he wanted it.”
*Names have been altered to protect the family’s privacy.

Drug Stories

A numerical look at medical-aid-in-dying meds.

$3,000 to $5,000: Cost for a lethal dose of Seconal (secobarbital), one of the drugs doctors can prescribe. The price for the same amount of medication was less than $200 in 2009; the drugmaker has increased the cost dramatically since then. Many insurance companies will not cover the life-ending medication.

4: Drugs that pharmacists compound to make a lower-priced alternative to Seconal. The mixture of diazepam, morphine, digoxin, and propranolol, which is reportedly just as effective as Seconal, costs closer to $500 (pre-dose medications included).

5: Ounces of solution (drugs in powder form that are dissolved in a liquid) a medical-aid-in-dying patient must ingest within about five to 10 minutes.

2: Pre-dose medications—haloperidol to calm nerves and decrease nausea and metoclopramide to act as an anti-vomiting agent—patients usually take about an hour before ingesting the fatal drugs.

10 to 20: Minutes it typically takes after the meds are ingested for a patient to fall asleep; death generally follows within one to three hours.

Uncomfortable Silence

Just because roughly 65 percent of voters approved Colorado’s End-of-Life Options Act in 2016 doesn’t mean Centennial Staters are completely at ease with the idea of the big sleep. Just ask these health care professionals and death-industry veterans.

“In a perfect world, I think one should be with family at the end. There are benefits of sitting with a dying person. Compassion means ‘to suffer with.’ Sometimes that suffering isn’t physical; it’s emotional. A lot of healing can happen at the end.”
—Dr. Michelle Stanford, pediatrician, Centennial

“If people’s existential needs and pain are addressed—things they need to talk to their doctors and family about—natural death can be a beautiful thing. It doesn’t have to be scary. In American society, we don’t talk about death and dying. It’s because we fear it. We are afraid of the anticipated pain, of having to be cared for. In other cultures, there is more family support and there is no thought of being a burden. This is a part of life, part of what should naturally happen.”
—Dr. Thomas Perille, internal medicine, Denver

“Doctors don’t die like our patients do. We restrict health care at the end of our lives. My colleagues don’t do the intensive care unit and prolonged death. We, as doctors, are not doing a good job helping patients with this part of their lives. Dying in a hospital is the worst thing ever. There is an amazing difference dying at home around friends and family.”
—Dr. Cory Carroll, family practice physician, Fort Collins

“Most people are unprepared for what needs to happen when a death occurs. Those who choose to lean toward the pain with meaningful ritual or ceremony are the ones I see months later who are moving through this process toward healing. The ones who think that grief is something that occurs between our ears are the ones who struggle the most. Sadly, we live in a society and a culture where grieving and the authentic expression of emotion is sometimes looked down upon.”
—John Horan, president and CEO of Horan & McConaty Funeral Service, Denver

“We only die once, so let’s do it right. When death happens, whether it’s our own or a loved one or someone we know, it’s not just their death that we’re acknowledging, but it’s life that we are all acknowledging. I think it’s helpful and healthy to honor death because in doing so, we are helping to celebrate life.”
—Brian Henderson, funeral celebrant, Denver

63 Percentage of Americans, 18 years or older, who die in hospitals and other institutional settings, like long-term care facilities and hospices. In 1949, however, statistics show that only 49.5 percent of deaths occurred in institutions. Because death in the home has become more uncommon, experts say, few Americans have direct experience with the dying process and that separation has, in part, led us to fear, misunderstand, and essentially ignore the end of life as an important stage of life itself.

Sources: Centers for Disease Control and Prevention; American Psychological Association

Another Shoulder To Lean On

Front Range support groups that can make bereavement more bearable. —Will Jarvis

Healthy Self. Healthy Life.

This two-therapist firm offers support sessions specifically for those in their 20s and 30s as well as an anticipatory grief gathering called Facing The Long Road. This latter group—which focuses on helping 19- to 36-year-olds manage the despair and caregiving duties that can come with having a parent with a terminal illness—zeroes in on a demographic whose busy lives often get in the way of their well-being. Cost: $35/session

The Compassionate Friends

The premise behind the Compassionate Friends, a 49-year-old international organization, is that only other bereaved parents can understand the pain of losing a child. Today, the group gathers parents, grandparents, and family members and encourages peer-to-peer healing in monthly sessions. Six Front Range chapters provide safe places for those struggling with loss to share coping mechanisms and ways to find a new normal.
Cost: Free

Judi’s House

Childhood traumas, such as losing a sibling or a close relative, can be especially challenging to overcome. That’s why this nonprofit, housed two blocks from City Park, has trained clinicians on staff to help both children and families dealing with grief. Its 10-week structured programs put kids in groups of five to 10 other children, and the organization provides a free dinner before each weekly meeting—giving anguished families one less thing to worry about.
Cost: Free

What Remains

While there are myriad ways to die, in Colorado there are only a few methods by which your body can (legally) be disposed: entombment, burial, cremation, or removal from the state. We spoke with Centennial State funeral homes and cemeteries to understand the options. Just remember: Colorado law says the written wishes of the deceased must be followed, so discuss what you want with your family ahead of time so they aren’t surprised.

Burial

Typical cost: From about $5,000 for a casket and full funeral service, plus about $5,000 for cemetery fees (plot, headstone, etc.)
What you need to know: In Colorado, a funeral home cannot move forward with a burial (or cremation or transportation across state lines) until a death certificate is on file with the county and state, which normally takes a few days. The funeral home will need information like social security numbers and the deceased’s mother’s maiden name to begin the process. Further, state law requires that if a body is not going to be buried or cremated within 24 hours, it must be either embalmed (using chemicals as a preservative) or refrigerated, so make sure your loved ones know what you prefer. Your family can opt to have your body prepared at a funeral home and then brought home for a viewing or service, though. Finally, federal law mandates that your family be given pricing details about caskets, cemetery fees, and the like before they make a decision, so they are prepared for the costs.

Cremation

Typical cost: From about $600 for transportation, refrigeration, and cremation; additional fees for urns, memorials, and/or funeral services
What you need to know: Choosing cremation does not preclude having a funeral; many people opt to have funeral services and then have the body cremated. (In this case, you’ll still need a casket, but you can rent one instead of purchasing it.) Once you’ve gone the ashes-to-ashes route, you can’t be scattered willy-nilly on federal land, in part because straight cremains are not healthy for plants. For example, your family will need to apply for a free permit—which stipulates how and where ashes can be spread—if you’d like to have your cremains placed inside Rocky Mountain National Park. The most popular national park in Colorado got more than 180 such requests last year.

Green Burial

Typical cost: From about $1,500
What you need to know: Only one Colorado cemetery (Crestone Cemetery) and handful of funeral homes (like Fort Collins’ Goes Funeral Care & Crematory) have applied for and been certified by the Green Burial Council. That doesn’t mean there aren’t various shades of “green” burial available throughout Colorado, though, at places such as Littleton’s Seven Stones Chatfield—Botanical Garden Cemetery and Lafayette’s the Natural Funeral. Among the greener ways to go: avoid embalming (so the harmful chemicals don’t seep into the ground upon decomposition); opt for a simple shroud or biodegradable casket; have your grave be dug by hand, instead of with machinery, which comes with a carbon footprint; or select a cemetery or cremation garden that uses environmentally friendlier plants for landscaping (for example, Seven Stones uses rhizomatous tall fescue for its meadow, which requires less water to maintain).

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Creating Rituals To Honor The Dead At Long-Term Care Facilities

Death and its companion, grief, are often ignored at nursing homes and assisted living centers. Yet ignoring the loss can lead to depression, staff burnout and other problems.

Staff members at Gray Health & Rehabilitation participate in the annual bereavement ceremony.

By Judith Graham

One by one, their names were recited as family members clutched one another’s hands and silently wept.

Seventeen men and women had died within the past year at Gray Health & Rehabilitation, a 58-bed nursing home. Today, their lives were being honored and the losses experienced by those who cared for them recognized.

Death and its companion, grief, have a profound presence in long-term care facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they’d helped for months.

But the tides of emotion that ripple through these institutions are rarely openly acknowledged.

“Long-term care administrators view death as something that might upset residents,” said Dr. Toni Miles, a professor of epidemiology and biostatistics at the University of Georgia. “So, when someone passes away, doors are closed and the body is wheeled discretely out the back on a gurney. It’s like that person never existed.”

At Gray Health’s memorial service on this warm, sunny day, a candle was lit for each person who had died. Their images — young and vibrant, then old and shrunken — flashed by in a video presentation. “Our loved ones continue to live on in the memories in your hearts,” Rev. Steve Johnson, pastor of Bradley Baptist Church, said from a podium.

Dozens of family members gathered outside, each holding a white balloon. At the count of three came the release. Cries of “I love you” echoed as the group turned their faces to the sky.

Sylvia McCoullough wraps her arm around daughter Kim Kohlmayer as they mourn Sylvia’s father, Melvin Henry “Bo” Daniels, at an annual bereavement ceremony at the Gray Health & Rehabilitation in Gray, Ga., on May 14, 2018.

Miles wants to see bereavement openly acknowledged at facilities throughout Georgia to end what she calls “the silence surrounding loss and death in long-term care.” Following in-depth discussions with more than 70 staffers, residents and family members at nine facilities in central Georgia, she has created two handbooks on “best practices in bereavement care” and is gearing up to offer educational seminars and staff training in dozens of nursing homes and assisted living residences across the state.

“Dr. Miles’ work is incredibly important” and has the potential to ease end-of-life suffering, said Amanda Lou Newton, social services team leader at Hospice of Northeast Georgia Medical Center.

Fraught reactions to loss and death are common among nursing assistants and other staff in long-term-care facilities, research shows. When feelings aren’t acknowledged, grief can go underground and lead to a host of physical and psychological symptoms, including depression, distancing and burnout.

Those mourning former nursing home residents pray together near the end of an annual bereavement ceremony at Gray Health & Rehabilitation in Gray, Ga., on May 14, 2018.

Joanne Braswell, director of social services at Gray Health, remembers a resident with intellectual disabilities who would stay in Braswell’s office much of the day, quietly looking at magazines. Over time, the two women became close and Braswell would buy the resident little gifts and snacks.

“One day, I came in to work and they told me she had died. And I wanted to cry, but I couldn’t,” Braswell recalled, reflecting on her shock, made more painful by memories of her daughter’s untimely death several years earlier. “I promised myself never again to [become] attached to anyone like that.” Since then, when residents are actively dying, “I find myself pulling away,” she said.

Sylvia McCoullough, 56, came to Gray Health’s memorial ceremony for her father, Melvin Daniels, who died on April 19 at age 84.

A balloon release concludes the annual bereavement ceremony at Gray Health and Rehabilitation in Gray, Ga.

Two years earlier, not long before her mother passed away, McCoullough had realized that her father had dementia. “He was the strong one in our family. … He always took care of us,” she said, explaining that her father’s confusion and hallucinations shook her to her foundation.

“I cry all the time,” McCoullough continued, looking distressed. “It’s like I’m lost without my mom and dad.” But Gray’s ceremony, she said, brought some comfort.

Edna Williams, 75, was among dozens of residents at the event, sitting quietly in her wheelchair.

“I love to recall all the people that have passed away through the year,” said Williams, who sends sympathy cards to family members every time she learns of a fellow resident’s death. On these occasions, Williams said, she’s deeply affected. “I go to my room” and “shed my own private tears” and feel “sadness for what the family has yet to go through,” she said.

Cathy Bass (left) and granddaughter Heaven Melton attended the bereavement ceremony at Gray Health & Rehabilitation in remembrance of Bass’ brother, Timothy Marion Sanders. “I miss him every day,” she says.

Chap Nelson, Gray Health’s administrator, has instituted several policies that Miles’ bereavement guide recommends as best practices. All staff members are taught what to do when a resident dies. When possible, they’re encouraged to attend the off-site funerals. Every death is acknowledged inside the building, rather than hidden away.

If one of his staff members seems distressed, “I go out and find them and talk to them and ask how I can help them with the feelings they may be having,” Nelson said.

Other best practices include offering support to grieving residents and relatives of the deceased, recognizing residents’ bereavement needs in care plans, and having a protocol to prepare bodies for final viewing.

Some facilities go further and create unique rituals. In one Georgia nursing home, staff members’ hands are rubbed with essential oils after a resident’s death, Miles said. In Ontario, Canada, St. Joseph’s Health Centre Guelph holds a “blessing ritual” in the rooms where people pass away.

Fifteen miles away from Gray, in Macon, Ga., Tom Rockenbach runs Carlyle Place, an upscale facility with four levels of care: independent living, assisted living, memory care and skilled nursing services. Altogether, about 325 seniors live there. Last year, 40 died.

“We don’t talk about it enough when someone passes here; we don’t have a formal way of expressing grief as a community,” Rockenbach said, discussing what he learned after Miles organized listening sessions for staff and residents. “There are things I think we could do better.”

When a death occurs at this continuing care retirement community, an electric candle is lit in the parlor, where people go to pick up their mail. If there’s an obituary, it’s placed in a meditation room, often with a sign-in book in which people can write comments.

Since working with Miles, Rockenbach has a keener appreciation for the impact of death and loss. He’s now considering starting a support group for staff and hosting a death cafe for residents where “people could come and hear what other people have gone through and how they got through it.”

Tom Rockenbach (center) is executive director of the Carlyle Place senior living facility in Macon, Ga. Rockenbach is considering starting a support group for staff and hosting a death cafe for residents where “people could come and hear what other people have gone through and how they got through it.”

Tameka Jackson, a licensed practical nurse who has worked at Carlyle Place for eight years, became distraught after the death of one resident, in his 90s, with whom she had grown close.

“Me and him, we were two peas in a pod,” she said, recalling the man’s warmth and sense of humor.

Over time, the old man confided in the nurse that he was tired of living but holding on because he didn’t want family members to suffer. “He would tell me all kinds of things he didn’t want his family to worry about,” Jackson said. “In a way, I became his friend, his nurse and his confidante, all in one.”

One morning, she found his room was bare: He’d died the night before, but no one had thought to call her. Jackson’s eyes filled with tears as she recalled her hurt. “I’m a praying person, and I had to ask God to see me through it,” she said. “I found comfort in knowing he knew I genuinely loved him.”

Jan Peak, 81, was dealing with grief of a different sort in mid-May: Her husband, David Reed, who had rapidly advancing Parkinson’s disease, had recently moved to Carlyle Place’s assisted living section from their independent-living apartment— signaling the end of their time living together.

Like other people at Carlyle Place, Peak had a lot of adjusting to do when she moved into the facility five years ago after her first husband had died. “Lots of people here have come here from somewhere else and given up their homes, their friends and their communities, often after the death of a spouse,” Peak said. “Once you’re here, loss — either your own or someone else’s — is around you continually.”

She found herself turning to David, whose first wife had died of a brain tumor and whom she describes as a “soft, sweet, wise man.” Before they married, they talked openly about what lay ahead, and Peak promised she would carry on.

“No one can stop the heartache that accompanies loss,” but “my friends and family still need me,” she said.

In late May, David sustained a severe head injury after falling and died. “I miss him greatly as we were very happy together,” Peak wrote in an email. “I am doing as well as I can.”

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A dying mother wrote her children letters, leaving a gift of love for years

Before dying of brain cancer at age 56, Jacqueline Zinn wrote letters to each of her children, including daughter Mary Kathryn.

By Steven Petrow

My friend Jacqueline Zinn was diagnosed with glioblastoma, a brain cancer, in 2013; she died 18 months later, at age 56, leaving behind a husband and four kids. Jacquie was a triathlete who knew a thing or two about endurance, and she managed her treatment — surgery, radiation and chemotherapy — with the same skill and organization she had brought to her work as a project manager for a drug company. Once she realized that she had only weeks to live, Jacquie began planning for the next chapter: her death and its aftermath.

And so “every night for weeks she wrote letters to our children,” her husband Doug recalled. Jacquie wrote multiple letters to each child, to be opened at different life milestones. Jacquie wanted to be “present with her kids,” he said, at each of those important moments

for what I jokingly call “The End” is not for faint hearts. War hero John McCain is said to have been disciplined and firm as he planned his funeral over the past year, including the singing of the Irish ballad “Danny Boy.” But few of us have that strength. Recently divorced, I needed to rewrite my will and my medical power of attorney as well as a host of other financial and medical documents. At almost every turn, I found myself crashing head-on into the wall of denial. Just last week, my attorney begged me to acknowledge that I was at least receiving her emails, even if I couldn’t respond to them. “Yes,” I replied, tersely. All this resistance, and I’m not suffering from any terminal condition.

That’s why Jacquie Zinn’s letters to her children seem heroic to me. After all, she did have a terminal diagnosis when she sat down to write what ended up being more than a dozen letters to her children, ranging in age from 11 to 21, and she knew her time was short. I first heard about the letters at her memorial service in 2013. This past spring, working on a book about death and dying, I reached out to her second-born son, Jerry, who was writing about the loss of his mother, to ask if he’d be willing to share his letters from her. He’d already gotten two — one soon after her death and one when he graduated from college — and after some hesitation, he said okay. Now 24, Jerry will get the final letter when he marries.

“The letters my mother left me are among the most precious gifts I possess,” he told me. “She diligently took the time, the very limited time, as her life was coming to an end to sit down and think about her children’s futures.”

So one day, in perfect cursive penmanship and blue ink after her oncologist told her she had only weeks left, Jacquie wrote her first letter to Jerry, then age 19, to be opened after she died. Here is a portion of it:

“Dear Jerry, my budding film-maker,

“I know you have a lot of emotions running through you, as I did when my father died, but I was much older than you at the time, so I really can’t begin to truly comprehend what you are feeling. I am so incredibly sorry that I had to die while you are so young and I assume it sucks for you. Perhaps you can use some of these emotions and feelings in your upcoming work(s), assuming you continue to pursue film.

“Let me assure you that I did absolutely everything I could to stay alive for as long as possible. I know you realize that having been with me at many of my treatments or tests. Plus the acupuncture, tons of praying I also did. But for some reason I just didn’t make it as one of the chosen ones to be cured. But because of what I did I’m sure I lived much longer than if I hadn’t been in good shape to begin with.

“I am incredibly proud of you for everything you have done in your relatively short life. I will be watching over you every day to see what new and exciting things you will accomplish — regardless of what occupations(s) you pursue over your lifetime.

“Do your best to support Dad and your siblings, especially during this first year as it will be the hardest for everyone. I remember that from when my father died. Time will certainly help, but it takes a long time to focus on the happy memories while the sad thoughts are more immediate and closer at hand.

“I had many fantastic years on earth, more than a lot of people, hence, I have no complaints. I survived a melanoma, car accident in the mountains of West Virginia with Uncle Jerry, car accident in Durham. So I have already lived many lives and I was extremely grateful for each and every moment. Try and live your life that way and you will be a happy and fulfilled human being.

“I love more than you will ever know, my dearest Jerry.

“Love, Mom.”

On the day Jerry graduated from the University of North Carolina at Chapel Hill in 2016, Doug handed over letter No. 2, written with the same pen, on the same type of note paper.

“My sweet dear Jerry,

“Well — this is it — a big milestone in your life — college graduation! Congratulations. I am so incredibly proud of you no matter what your major or minors. I know you made it worthwhile and got just exactly what you wanted to out of the experience. I know you learned an incredible amount about subjects and probably an even greater amount about people.”

Jerry said that at various times during college he had considered dropping out, but “knowing that I would never receive that letter if I did not graduate was a very strong influence in keeping me in school. The letter was a motivation for which I will be forever grateful.” Knowing Jacquie as I did, I’m certain that was part of her master plan.

In the second letter, Jacquie signs off with these words: “I am watching over you all the time, or at least I hope I can do that! Congratulations, again. Enjoy this fabulous day and all the celebrations around. Big Hugs and Kisses! Much Love, Mom.”

What a gift, an eternal gift, I thought as I read and reread the two letters. More than anything, I silently bowed in amazement, understanding how Jacquie had faced her own version of “The End.” Doug reminded me that she’d written her letters while in a wheelchair, paralyzed on one side.

With Jacquie’s example in mind, I finally sat down and read the pile of documents my lawyer had sent to me, realizing that my denial served no purpose. To my surprise, I found comfort in taking care of that necessary business — once done. I’d like to think that was something Jacquie felt, too, as she sent her missives into the future.

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The Death of the ‘Standard Funeral’

Funeral customs are changing dramatically, leaving families with more decisions to make at just the moment they may be least prepared to make them. Making decisions ahead of time honors “ancient wisdom.”

A funeral procession from the early 1900s.

By Steve Willis

Yogi Berra once quipped, “The future ain’t what it used to be.” If there is a time that I see church parishioners facing Yogi’s confused logic, it is when dealing with decision making for a funeral and burial of a loved one. American culture is going through a tumultuous season of cultural change. The last time that people want to deal with more change is during the loss and grief of a loved one’s death. But the reality is that the American funeral experience has changed and is continuing to change dramatically.

When I performed my first funeral in 1993, there was a certain set of expectations for what would happen when someone died. It almost always went like this. Three days after the person died there would be a funeral, or rarer then, a memorial service (a worship service without the body of the deceased). The evening before the funeral there would be a visitation at the funeral home to view the body and share condolences with the family. Usually at 11 a.m. or at 2 p.m. the funeral would take place at the church. Then the family, followed by friends, would drive in procession with headlights on to the cemetery for a brief committal service. After the committal the family returned to the church for a meal and time to visit. On occasion I have been invited to drop by the family home afterwards when all had been finished and there was nothing left to do but sip bourbon and visit.

Yes, this is a very Presbyterian, and a very Southern Presbyterian funeral experience. We value brevity when it comes to funeral worship services, and we value lingering when it comes to visiting afterwards. Of course, there are many variations on a theme played out in different religious traditions, and all of them have their strengths and weaknesses. I admire the African-American Baptist tradition, which has been able to resist many of the negative consumeristic trends involved with funerals, but I do not possess the proclamatory wind to preside for several hours over a funeral service.

Things have certainly changed from when a traditional schedule was the expected norm. There are many reasons for the changes that now often require families to design their own funeral rituals. One of the most significant is that in 1970 only 5% of the American population was cremated after death. Last year 55% chose cremation. The cost of burial with embalming of the body, metal casket and metal vault can run about $11,000, and of course this has been a motivating factor for choosing cremation.

Not too long ago I performed a funeral for the beloved family doctor of his remote rural village. He had made all the arrangements well in advance of his death. Ben was buried in a simple pine box that he had made himself and was interred on a hill at the back of his farm. He had a friend who had prepared his body after death and kept the body refrigerated until his family could see it. The doctor was a keen environmental steward of his farm as well as his community, and he did not wish to add the mixture of formaldehyde, methanol and humectants to the soil of his farm. This makes me wonder what really is traditional after all, because the doctor’s method would have been common place before industrialization and the Civil War. (Check out this website for different state requirements for a funeral at home.)

Ben was on to something. Think about what you would like your funeral to be. Talk to others about it. Don’t get scared off by our American cultural reluctance to have a conversation about death. Do you want to be cremated or embalmed? There are other options now to cremation than burning the body; it can also be done with water. Do you want a religious service to mark the occasion? What will be most helpful for your surviving family? I think that religious services can be deeply moving and genuinely helpful for people. But I should think that. I am a pastor. I know that this is not true for everyone. The point is to think about this beforehand and share with your family what is important to you and make plans for it.

Let me put in a word for funeral home directors. It has been my good fortune to be friends with a couple of them and a golf partner with one of them. I have often heard terribly negative caricatures of funeral home directors, most of the time from people whose only experience has been attending a few funerals. My experience has shown them to be people who pursue their work as a calling. I have watched them at times provide funeral services for poor families with disregard to the business end of their work. If you are interested in learning what a funeral director’s life is like, then read Thomas Lynch’s The Undertaking: Life Studies from the Dismal Trade. He is an American Book Award winner writer and a funeral home director in his small town of Milford, Michigan.

Lynch gives us, who live in what is often a death-denying culture, this sober reminder.

This is the central fact of my business – that there is nothing, once you are dead, that can be done to you or for you or with you or about you that will do you any good or any harm; that any damage or decency we do accrues to the living, to whom your death happens, if it really happens to anyone. The living have to live with it. You don’t. Theirs is the grief or gladness your death brings. Theirs is the loss or gain of it. Theirs is the pain and pleasure of memory.

The practical wisdom of these words reminds us that when the time finally comes for you or for me as it will for us all, water cremation, fire cremation, embalming, metal vaults, pine boxes, columnbariums, floral wreaths, funeral homilies, favorite hymns, presented flags and headstones will not matter to us. But some of these things will matter and give meaning to those who survive us.

I realize I’m not making any of this process easier. That’s my point. It’s not easy. And the ever-growing options only make for more complicated decisions. But reflecting upon death and dying and thinking about what our end will be like for others make us better human beings. And that is nothing new at all. That is ancient wisdom. 

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Stories of the Land:

Returning to the Earth

By Rose Jenkins Lane

Caroline Yongue had taken on the task of creating a conservation burial ground in Mills River, but the land was an impenetrable mass of weeds: hundreds of young Bradford pear trees, poison ivy growing high and dense, kudzu and bittersweet choking trees. You couldn’t walk through it.

She says, “There was kind of a freak-out for me, like, ‘Holy crap, what am I going to do with this?’”

But Caroline has a way with fear. It was one reason why her Buddhist teacher asked her to start doing death care. “She saw in me that I had a willingness to step past my fear,” Caroline says. “That when it arose, I saw it as an opportunity to go beyond. I didn’t let it stop me.”

Over 20 years ago, her teacher asked her to figure out how to take care of a dead body, without embalming, to be cared for by friends and family. “I thought it was an unusual question,” Caroline says, “but I trusted her that she knew my practice, so I said okay.”

At the time, Caroline says, “I had never seen death!”

She went through the process for the first time with an ailing kitten. “I talked to him about what was happening and I held him as he was dying.” Afterward, she laid out his tiny body, allowing time for the spirit to pass from the body.

When Ruby, the mother of a friend, was dying, Caroline asked if she would be willing to help her train and Ruby agreed. “I interviewed her about her death and dying, what she wanted, what were her spiritual practices, what did she believe was going to happen with her body after death,” Caroline says. “We provided all those things for Ruby as she was dying and at her death.”

But to go there, she had to step through fear. She says, “There was a voice in the back of my head going, ‘What are you doing? You don’t know what you’re doing! You can’t do this. You’re a fraud, blah blah blah blah.’ But I just kept doing it. I learned. And I continue to learn.”

Restoring the land

Caroline began serving as a death doula and death midwife. She started the Center for End of Life Transitions, facilitating home funerals and teaching people how to prepare for death. And she was interested in starting a conservation burial ground.

The time felt right in 2007, when she was newly married. She found 30 acres in Black Mountain. But things didn’t go according to plan, as the economy tanked. Caroline went through a serious illness and a divorce. She let the idea go.

Then, in 2014, a friend reached out. Her church in Mills River — Unity Center of the Blue Ridge — owned some extra land and they were interested in starting a green burial ground. Caroline decided to sell her home in West Asheville and then gave the money to her Buddhist group, which purchased the land to start Carolina Memorial Sanctuary.

That’s how she found herself in charge of 11 acres of vigorous weeds.

“One of the good things and the bad things about me is I can envision,” Caroline says. “I can manifest things just by thinking about it and envisioning it. So I just trusted the process. There were certainly times when I was like, ‘What the bleep am I doing?’ Part of this is my Buddhist practice. I just go, ‘Well, you just do the next thing.’”

 

One of her goals was to ensure the lasting conservation of the land. But, when Kieran Roe and Tom Fanslow from Conserving Carolina — a local land trust — first came out for a visit, they told Caroline that the land didn’t have much going for it, ecologically. There is a creek on the property that flows into the French Broad River and a wetland that had been partially filled in. So, it had potential, but it would take a lot of work to bring it back as a healthy natural habitat.

Caroline went for it. First, the sanctuary hired a contractor to clear out undesirable trees. For a year, Caroline and her small staff just watched what came back. The next step was to start removing invasives.

The land is a work-in-progress, with Caroline pointing out where an archway will go, a white oak, a composting toilet, graveled paths, a garage. In August, as she walked with her dog, Jasper, the meadow was full of Joe Pye Weed, with globes of purple blossoms swaying well above her head. Goldenrod, ironweed and butterfly weed were blooming, with monarch and swallowtail butterflies flitting over the flowers.

Recently, Conserving Carolina helped the sanctuary secure grants for an ambitious restoration project—to reclaim the wetland, reshape eroding stream banks and remove invasives, including kudzu and bamboo. Soon, the land trust and the sanctuary will finalize a conservation easement to ensure that the land will be protected forever. Carolina Memorial Sanctuary also donates a portion of the sale of burial sites to support Conserving Carolina.

Taking death back

In these natural surroundings, people give their loved ones back to the earth — both people and pets. And the meadow, woodland, wetland and stream create a place where people want to come back and reflect.

The sanctuary offers sites to scatter ashes or bury a body, in harmony with nature. Bodies are buried without embalming fluid, in a shroud or coffin that will break down underground. Graves are dug only three feet deep so that plants can benefit from the nutrients. Ashes are amended in order to keep the soil chemistry balanced.

Each rite of passage is different, Caroline says. They’ve had Christian, Jewish, Buddhist and Wiccan ceremonies. “I have to get out of the way, because I don’t know what their experience needs to be,” she says. “You’ve always got to be stepping back, stepping out of me so that what is greater can show itself.”

People may help carry in their loved one’s body or cover it with earth, in some cases having helped to prepare the body. Caroline says, “The other option, that the body’s gone and you might be able to see it at a funeral home embalmed and it doesn’t look like your mother and you don’t want to touch it and you don’t want to emote and you’re in a hurry — it’s so unnatural. Now being able to do this, by the time people finish covering the grave, they’re laughing, they’re not crying anymore. They’re just so joyous, they’re chatting, they’re telling stories about the person.”

Through all of her death care work, she says, “I think the idea is helping people take death back into their own hands and not be afraid of it. It’s part of life. And there’s a great healing that happens.”

She tells a story of one man whose husband died suddenly. When he contacted Caroline, the body had already been taken away, but she let him know that they could bring it back to their home. Before the burial, she helped the man and his friends prepare the body.

“I just facilitated the home funeral where I just directed his gay friends to bathe and dress this man,” she says. “We just stood back and provided support and they did it. It was one of the most beautiful home funerals I’ve ever done because these men were taking care of this man. And the man whose husband died said that because he was able to still participate — even though he died suddenly — it was so transforming to him.”

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Some believe funeral preplanning brings death to their doorsteps

It’s quite the opposite

To help relieve their families, an increasing number of people are planning their own funerals, designating their funeral preferences, and sometimes paying for them in advance. They see funeral planning as an extension of will and estate planning.

Funeral Planning Tips

Thinking ahead can help you make informed and thoughtful decisions about funeral arrangements. It allows you to choose the specific items you want and need, and compare the prices offered by several funeral providers. It also spares your survivors the stress of making these decisions under the pressure of time and strong emotions. You can make arrangements directly with a funeral establishment.

An important consideration when planning a funeral pre-need is where the remains will be buried, entombed, or scattered. In the short time between the death and burial of a loved one, many family members find themselves rushing to buy a cemetery plot or grave — often without careful thought or a personal visit to the site. That’s why it’s in the family’s best interest to buy cemetery plots before you need them.

You may wish to make decisions about your arrangements in advance, but not pay for them in advance. Keep in mind that over time, prices may go up and businesses may close or change ownership. However, in some areas with increased competition, prices may go down over time. It’s a good idea to review and revise your decisions every few years, and to make sure your family is aware of your wishes.

Put your preferences in writing, give copies to family members and your attorney, and keep a copy in a handy place. Don’t designate your preferences in your will, because a will often is not found or read until after the funeral. And avoid putting the only copy of your preferences in a safe deposit box. That’s because your family may have to make arrangements on a weekend or holiday, before the box can be opened.

Prepaying

Millions of Americans have entered into contracts to arrange their funerals and prepay some or all of the expenses involved. Laws of individual states govern the prepayment of funeral goods and services; various states have laws to help ensure that these advance payments are available to pay for the funeral products and services when they’re needed. But protections vary widely from state to state, and some state laws offer little or no effective protection. Some state laws require the funeral home or cemetery to place a percentage of the prepayment in a state-regulated trust or to purchase a life insurance policy with the death benefits assigned to the funeral home or cemetery.

If you’re thinking about prepaying for funeral goods and services, it’s important to consider these issues before putting down any money:

  • What are you are paying for? Are you buying only merchandise, like a casket and vault, or are you purchasing funeral services as well?
  • What happens to the money you’ve prepaid? States have different requirements for handling funds paid for prearranged funeral services.
  • What happens to the interest income on money that is prepaid and put into a trust account?
  • Are you protected if the firm you dealt with goes out of business?
  • Can you cancel the contract and get a full refund if you change your mind?
  • What happens if you move to a different area or die while away from home? Some prepaid funeral plans can be transferred, but often at an added cost.

Be sure to tell your family about the plans you’ve made; let them know where the documents are filed. If your family isn’t aware that you’ve made plans, your wishes may not be carried out. And if family members don’t know that you’ve prepaid the funeral costs, they could end up paying for the same arrangements. You may wish to consult an attorney on the best way to ensure that your wishes are followed.

Funeral Terms and Contact Information

This article provides a glossary of terms you will encounter when planning a funeral, and offers a list of resources for more information.

Glossary of Funeral Terms

Alternative Container: An unfinished wood box or other non-metal receptacle without ornamentation, often made of fiberboard, pressed wood, or composition materials, and generally lower in cost than caskets.

Casket/Coffin: A box or chest for burying remains.

Cemetery Property: A grave, crypt, or niche.

Cemetery Services: Opening and closing graves, crypts or niches; setting grave liners and vaults; setting markers; and long-term maintenance of cemetery grounds and facilities.

Columbarium: A structure with niches (small spaces) for placing cremated remains in urns or other approved containers. It may be outdoors or part of a mausoleum.

Cremation: Exposing remains and the container encasing them to extreme heat and flame and processing the resulting bone fragments to a uniform size and consistency.

Crypt: A space in a mausoleum or other building to hold cremated or whole remains.

Disposition: The placement of cremated or whole remains in their final resting place.

Endowment Care Fund: Money collected from cemetery property purchasers and placed in trust for the maintenance and upkeep of the cemetery.

Entombment: Burial in a mausoleum.

Funeral Ceremony: A service commemorating the deceased, with the body present.

Funeral Services: Services provided by a funeral director and staff, which may include consulting with the family on funeral planning; transportation, shelter, refrigeration and embalming of remains; preparing and filing notices; obtaining authorizations and permits; and coordinating with the cemetery, crematory or other third parties.

Grave: A space in the ground in a cemetery for the burial of remains.

Grave Liner or Outer Container: A concrete cover that fits over a casket in a grave. Some liners cover tops and sides of the casket. Others, referred to as vaults, completely enclose the casket. Grave liners minimize ground settling.

Graveside Service: A service to commemorate the deceased held at the cemetery before burial.

Interment: Burial in the ground, inurnment or entombment.

Inurnment: The placing of cremated remains in an urn.

Mausoleum: A building in which remains are buried or entombed.

Memorial Service: A ceremony commemorating the deceased, without the body present.

Niche: A space in a columbarium, mausoleum or niche wall to hold an urn.

Urn: A container to hold cremated remains. It can be placed in a columbarium or mausoleum, or buried in the ground.

Vault: A grave liner that completely encloses a casket.

For More Information about Funerals, Funeral Providers, and Where to File a Complaint

Most states have a licensing board that regulates the funeral industry. You may contact the board in your state for information or help. If you want additional information about making funeral arrangements and the options available, you may want to contact interested business, professional and consumer groups. Some of the biggest are:

  • AARP
    AARP is a membership organization for people 50 years of age and older. Funeral-related information also is available in the Grief & Loss section.
  • Cremation Association of North America
    CANA is an association of crematories, cemeteries, and funeral homes that offer cremation.
  • Funeral Consumers Alliance
    FCA is a nonprofit educational organization that supports increased funeral consumer protection. Their website has free pamphlets on funeral planning, plus a directory of local volunteer funeral planning groups.
  • Funeral Ethics Organization
    FEO, an independent nonprofit educational organization, promotes ethical dealings in death- related transactions and provides mediation assistance to resolve consumer complaints.
  • Green Burial Council
    GBC, an independent, nonprofit that encourages environmentally sustainable death care practices as a means of acquiring, restoring, and stewarding natural areas, assists consumers in identifying “green” cemetery, funeral, and cremation services.
  • International Cemetery, Cremation and Funeral Association
    ICCFA is a nonprofit association of cemeteries, funeral homes, crematories, and monument retailers that offers informal mediation of consumer complaints through its Cemetery Consumer Service Council. Its website provides information and advice in its Consumer Resource Guide.
  • International Order of the Golden Rule
    OGR is an international association of about 1,300 independent funeral homes.
  • Jewish Funeral Directors of America
    JFDA is an international association of funeral homes serving the Jewish community.
  • National Funeral Directors Association
    NFDA is an educational and professional association of funeral directors, which provides consumer information and sponsors the NFDA Help Line, which is designed to help consumers resolve complaints about NFDA members.
  • National Funeral Directors and Morticians Association
    NFDMA is a national association primarily of African-American funeral providers.
  • Selected Independent Funeral Homes
    SIFH is an international association of funeral firms that have agreed to comply with its Code of Good Funeral Practices.

Resolving Problems

If you have a problem concerning funeral matters, it’s best to try to resolve it first with the funeral director. If you are dissatisfied with the funeral services you receive, the Funeral Consumers Alliance offers advice on how best to resolve a problem. In addition, the FEO, the NFDA Help Line, and the ICCFA Cemetery Consumer Service Council may be able to provide informal mediation of a complaint. You also can contact your state Attorney General’s office or local consumer protection agencies.

In addition, you can file a complaint with the FTC online or call 1-877-FTC-HELP (382-4357); TDD: 1-866-653-4261. Although the Commission cannot resolve individual problems for consumers, it can act against a company if it sees a pattern of possible law violations.

Complete Article ↪HERE↩!

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Cancer, Death and Finding the Words to Say Goodbye

BY Khevin Barnes

Cancer has a way of forcing us to consider the inevitable notion of our own death, and whether you want to think about that or not, I want to suggest that it need not be dramatic or discomforting if we choose to simply observe the phenomenon as something both mysterious and certain.

When a lifelong friend told me she had terminal, inoperable cancer I searched long and hard for the genuine and unpretentious words to say, knowing I had only one shot at getting it right. I’ll call her by her first name, Laura.

I hired Laura to work for me in an entertainment agency I started in California back in 1978. We were both in our late 20s. She was talented and fun and did a great comedy routine as “Mae West.” We lost touch over the years, but she reappeared again when my wife was diagnosed with advanced ovarian cancer, since they had both been good friends. She checked in often as I did my best to be a supportive and loving caregiver for my wife who, despite our best efforts, died at the age of 47 in 1997.

Those of us with a cancer diagnosis, no matter the stage or grade, know all too well that people die from our disease. The end of a life is something we experience with increased frequency as we get older, and also as we come to know more and more people like us with varying degrees of cancer. Of course, many of us live long and fulfilling lives.

I want to share some of the actual words Laura and I exchanged by letter in her final days with some short excerpts, not simply to show the remarkable courage and insight she expressed, but to act as a visible example of how a conversation with a dying friend might evolve. I recall the distress I felt at having to say goodbye in my letter, knowing it would be the last exchange I’d have with her.

I wanted very badly to avoid being trite or patronizing, but most of all, I wanted to be open and honest and to find the words to express the sadness I felt to lose her, along with the joy of living my life while knowing her. Laura wrote:

“I found out today that my cancer has now grown significantly in my liver, along with other areas. At this point my oncologist said that he did not know of any other options for me as far as treatment, and I most likely have three months to live. He has taken me off the chemo I was on and has now written an order for Hospice. I am sorry to give you this news.”

I sat with this news for a day before writing back to her:

“I received the news that your cancer has advanced beyond the treatable stage and I’m writing to tell you that I love you and that no matter where you are in the universe, you are now and always will be in my thoughts, memories and in my heart. I know from my past experience with my wife, that many who know and love you are muted by grief and there is a great difficulty to find words for such things.”

I reminded her of a few incidents from our past working as entertainers – things we had laughed over long ago. I spoke briefly about our philosophical views of death and dying.

“My own cancer experience, along with my wife’s, has forever altered how I view life and death, and though I feel a tremendous sadness that you may soon be in another place where perhaps we can no longer be in touch, those feelings are tempered by my unshakable belief that life – just as it is – is absolute perfection. I know from our conversations that in having a complete trust in life’s ultimate plan and purpose as we both do, there is a comfort we feel in this mystery that lies ahead for you and me and all of us. Of course, it’s those we leave behind who suffer – perhaps the most – but life, at least from my perspective, is always about growth, even though it hurts like hell at times.

And finally, though we both had accepted that there was no turning back, I wanted her to know that she would not be forgotten.

“Being human, I have that familiar ferocious desire to hold on to all we love. I know I can’t hold on to you my friend, but I can always keep you close to my heart. There is a place there just for you. And I will never let that go. I promise.”

Stephen Murphy-Shigematsu is a psychologist in the Stanford University School of Medicine. He said, “Saying goodbye is learning what to hold onto and what to let go of. I firmly believe that by embracing our mortality with full awareness we can learn to experience life in a deeper and more passionate way. But the internal work of saying goodbye means finding a way to acknowledge that people come and go in our lives, leaving permanent imprints in our character; we inherit traits from everybody who crosses our paths or touches our hearts.”

Laura died five weeks after we exchanged our letters. Others in my life will die, too. And then one day of course, it will be my turn. And the only thing I know with any certainty is that these goodbyes are sure to repeat time and time again, until one day, that last goodbye will be the one reserved for me.

Complete Article ↪HERE↩!