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How To Support A Loved One Suffering From A Life-Threatening Illness


By Amanda Chatel

Watching someone you love suffer through an illness that could possibly lead to the end of their life is one of the most difficult things anyone can encounter. It doesn’t matter if your loved one lived well into their 90s or they’re still in the prime of their life — it’s a tragic loss for everyone involved. That’s especially true for the one who’s been diagnosed.

“You can be the most intelligent, organized person in the world, but hearing distressing news about your condition makes it hard to keep things straight,” associate medical director for Capital Caring Farrah Daly, M.D. tells WebMD.

Because of this, trying to navigate how to support a loved one in such a position can feel daunting. You want to be there for them, but you also want to give them their dignity and space when they need it. You want to be helpful, but also not treat them as though they’re incapable of things that they can still manage — and even want to manage — to do. It’s all about finding the right balance as to how to support them in a way that makes their mental and physical health as stress-free as possible during this difficult time.

Be honest with each other

There’s no sense in tiptoeing around the truth. If your loved one has a life-threatening illness, then it simply can’t be ignored. If there are children who will be affected by the illness, the truth shouldn’t be kept from them either. We live in a culture that still treats death as a taboo subject, which makes talking about it even more difficult. But it shouldn’t have to be that way.

“Death is an inevitable part of all our lives, and yet in modern society we have become far more distanced from the first-hand reality of it,” chief executive of Sue Ryder, a bereavement support center, Heidi Travis tells BBC. “It’s really time to open up a national conversation on death and dying with greater education and dialogue.”

While the illness shouldn’t be the only thing that’s discussed during this time, having conversations about it (instead of fearing the talks) will help everyone. It may not lead to acceptance of the illness — but it will help eliminate the stigma surrounding sickness and death.

Allow your loved one to feel their feelings

Until you’ve been diagnosed with a life-threatening illness, you’ll never truly know what that type of information does to a person. With this in mind, it’s important to allow your loved one to feel their feelings — all of them. If they’re feeling rage, anger, sadness, fear, guilt, cheated, or any other emotion, the best way to support them is to let them feel it all and actively listen to everything they’re saying. It’s important to realize that there’s no right or wrong way to grieve. Being given such news can bring out parts of your loved one that you may have never seen before.

“Let them feel what they want to feel by ensuring they are comfortable around you,” CEO of Grief Coach Emma Payne tells TZR. “But remember, everyone mourns differently, so be there for them whichever way they choose to cope (unless it’s dangerously unhealthy) … simply listen and sit with them as they grieve.”

If your loved one is dying, you can’t change that or take it away. But you can give them all the space they need to mourn their impending passing. Talk about everything they need to say before it’s too late.

Ask your loved one who they want to notify

Because of the taboo surrounding death and life-threatening illnesses, make sure you get the okay from your loved about who they would like to know about their sickness — and whom they’d prefer to keep in the dark. Not everyone is comfortable sharing such news, just like not everyone is comfortable receiving such news.

“Some people want to tell their story over and over again to each person — it helps them process their feelings,” associate medical director for Capital Caring, Farrah Daly, M.D., tells WebMD. “Others don’t want to relive the experience and would rather someone explain things for them. There’s no one right way.”

Even if you disagree with your loved one about certain people knowing that they’re sick, this is not your journey. While anyone who knows and loves someone with a life-threatening illness is involved, ultimately, this isn’t about you; it’s about the person who has the illness. Do right by them and only tell those whom they want to know about it.

Come up with a schedule

Depending on how far the illness is, there may be a need for a schedule for family members to stick to make sure your loved one is as comfortable as possible. For example, on Tuesdays and Thursdays, someone might be in charge of taking your loved one to doctor’s appointments. On Sundays, someone can bring over food for a few days so the person who is ill doesn’t have to think about preparing meals.

“Don’t wait for them to ask,” Dr. Varun Choudhary tells Bustle. “Instead, offer to help by bringing over dinner, shopping, gardening, etc.”

When people are very sick, they sometimes forget to take care of themselves because their mind is someplace else. Creating a schedule that everyone agrees works for them to make sure your loved one has food, takes their medication when they’re supposed to, and never misses a doctor’s appointment, creates an entire network of support so no one feels alone during this heartbreaking time.

Help them achieve any final wishes

If it looks as though your loved one is coming to the end of their life, then it’s time to have the very difficult talk about end-of-life wishes. In addition to helping them get their affairs in order so they don’t have to worry about how their last will and testament will be received by beneficiaries, you also want to talk to them about things they didn’t do, but might still want to. They’ve never seen the Pacific Ocean? Then it looks like it’s time for a road trip. They’ve always wanted to see the Red Sox play against the New York Yankees? Well, buy some tickets and get ready to heckle the opposing team’s fans (and enjoy boxes and boxes of extra salty popcorn).

Of course, not all wishes can be granted. But those that can fulfilled? Do your best to honor them for your loved one’s sake.

Allow yourself to grieve

Although you should try to avoid grieving in front of your sick loved one, it’s only natural to grieve what you’re going to lose — and grieve what your loved one is losing too. Grief is complicated. While your grief is going to look very different from the grief of your sick loved one (because you’re grieving different things), you shouldn’t try to suppress your feelings. People can’t be fully present and supportive if they’re hiding from their own feelings.

“Many people say they are feeling a heavy sadness — and what they’re describing is grief,” thanatologist David Kessler tells The Guardian. “We’re grieving the world we have lost: normal life, our routines, seeing our friends, going to work. Everything has changed. And change is actually grief — grief is a change we didn’t want.”

There will be okay days, and there will be bad days, but rarely good days as you support your loved one through this. You can’t undo reality. But as long as you stand by them and give them all the love and support you can, then you will have done right by them — and you won’t regret what you should have done differently down the road.

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Before your real funeral, you should attend a “living funeral”

— At this event, you’ll be around to hear the eulogy.

by Alexandra Keeler

  • A “living funeral” — also known as a “living wake” — is a ceremony held for a person who is still alive.
  • The living funeral has cultural roots in Japan as well as in long-held indigenous North American traditions.
  • While living funerals can ease fear and anxiety about death, traditional post-mortem funerals retain an important role in the grieving process.

“What a waste. All those people saying all those wonderful things, and Irv never got to hear any of it.”
— Mitch Albom, Tuesdays with Morrie

Death is inevitable. It is out of our control. But how we die is within our control. One way to reclaim some measure of control over death is by way of a “living funeral,” also known as a “living wake” — a ceremony held for a person who is still alive, often to celebrate their life and legacy while they are able to participate. Unlike a traditional funeral, it is a way for the person to say goodbye to loved ones and to be able to smell the flowers at their own funeral.

These events are often planned with the help of a “death doula,” who can provide guidance and support in creating a meaningful ceremony that reflects the individual’s wishes, values, and beliefs. The word “doula” is derived from the Greek term doulē, which means “female servant.”

A death doula is a trained guide who can provide  a holistic, community-based and personalized end-of-life experience. They work alongside medical and palliative care professionals rather than replacing them. Their training can include knowledge of the biological, psychological, social, spiritual, legal, and ethical aspects of end-of-life care. Overall, death doulas can help to alleviate the collective fear of death and promote greater peace and understanding in the face of this universal experience.

Where did living funerals come from?

The specific origins of living funerals are difficult to trace, as rituals like these have developed independently in different cultures over time.

The Lakota Sioux have a tradition of the living funeral in which they repair relationships or make amends, distribute family heirlooms, and eat traditional foods as a way of purifying and preparing for death. Near the time of death, family, friends, and neighbors gather to say farewell.

A living funeral is for the dying, while traditional funerals are for the survivors.

Anishinaabe people in the Great Lakes region of Canada and America also honor their dying loved ones with end-of-life ceremonies. A pipe ritual is commonly conducted by a spiritual leader to guide the person’s spirit to the spirit world. The sacred pipe is a revered tool for communication with the Creator, and during the ceremony, tobacco is smoked to express gratitude for life and creation. The dying person makes amends with the Creator while family members pray for their safe passage. Sacred medicines are burned, offerings of food and cloth are made, and loved ones sing sacred songs to ease the pain of the dying until their spirit leaves their body.

The Japanese have a non-traditional practice called seizensō, which means “funeral while alive.” According to cultural anthropologist Satsuki Kawano, this gives the elderly a novel sense of independence, countering negative perceptions of aging and the elderly. Due to various societal and economic factors, Japan’s traditional respect for elders is eroding and ageism has become a problem. Seizensō challenges the notion that the elderly are passive or burdensome members of society and emphasizes the importance of shaping their own lives and legacies.

What does a living funeral actually consist of?

Planning a living funeral is very personal and customizable, and the specifics can vary. The ceremony can be held in various locations, including a person’s home, an outdoor spot, a favorite restaurant, or any place of significance. Guests can bring mementos that trigger memories and stories, informal speeches can be made, and a designated friend or officiant typically orchestrates the activities. The sequence of events can include any variety of activities that reflect the individual’s personality and interests, but food, videography, music, art, and visiting the final resting place are some common choices.

One of the most important aspects of the living funeral is making the dying person feel comfortable and cared for. BJ Miller, a palliative care physician at the University of California-San Francisco Cancer Center, said in a 2015 TED talk, “So much of it comes down to loving our time by way of the senses — by way of the body; the very thing doing the living and the dying.” He urges people involved in end-of-life care to consider the bodily senses of the person who is dying. He recommends creating a pleasant and comforting experience for them that takes all of their senses into account and honors their dignity. He describes one elderly woman’s request to feel her dog pressing its nose against her skin.

Death doula Alua Arthur emphasizes creating an ideal deathbed as part of the living funeral ceremony. She advises making it comfortable, aesthetically pleasing, and sensually enriching by including favorite scents (incense), colors (pillows, art, flowers), and sounds (singing bowls, music).

If a ceremony is intended to help the person nearing the end of their life overcome anxiety about death, one of the events might include a guided meditation that walks the dying person through a visualization of their own death. Visualization techniques can be used to induce a sense of calm and connection to the natural world, and can help one to confront and come to terms with one’s own mortality. One such visualization guided by death doula Brooke Manning involves imagining oneself in a peaceful natural setting and then visualizing a metaphorical representation of life as a light within the body. This light is then imagined to sink down into the earth, joining up with lights that represent other people’s life sources, creating a sense of connection to the universe and fostering a deep understanding of one’s place in the world.

Informed consent should be at the center of a living funeral ceremony. It is important to ensure that the person for whom the living funeral is being planned has autonomy. A living funeral can also be an emotional experience for everyone involved, so it is important to ensure that the person and their loved ones are emotionally prepared for the experience.

Any decisions made should also be respectful of the person’s cultural, religious, and personal beliefs. To ensure that the ceremony appropriately reflects this, it is important to involve doulas who have the necessary cultural and spiritual knowledge, so it’s often helpful to select someone who approaches this work through a polytheistic lens.

One of the main decisions when planning a living funeral involves the timing of the ceremony. While it is a personal choice, and there is no specific requirement, most people choose to have a living funeral when they receive a terminal diagnosis or when they feel that their death may be approaching. However, others may choose to have it earlier to proactively participate in the event, enjoy the celebration of their life, and have meaningful conversations with their loved ones while they are still able to do so.

Living funerals can’t replace the real thing

Unlike in a traditional funeral, a living funeral allows the central figure to speak, hear others speak, take part in rituals and rites of commemoration, all while in the presence of supporters as witnesses. It is a collaborative and personalized ceremony that empowers the person of focus with agency during a time when their control is slipping away.

Psychologist Dr. Nick Capaul, who specializes in grief and loss, explains that an appropriate way to think about the difference between the two types of funeral, is that a living funeral is for the dying, while traditional funerals are for the survivors. Although both are beneficial, the latter is often still required for the bereaved to gain closure. In his experience, when families opt for a living funeral instead of a traditional post-mortem funeral, other family members or friends of the bereaved push back. They almost always want a traditional funeral. When people are robbed of their opportunity to confront and process death, people can experience what is called “disenfranchised grief.” In reference to grief, disenfranchisement means depriving someone of their right to grieve. Dr. Capaul believes that a living funeral does not include the element of loss, and if there is no loss, you are not truly confronting grief or processing death.

Dying individuals are often isolated due to illness or conditions that limit their communication and mobility, while friends and family may also avoid interactions due to discomfort and cultural taboos around death. A living funeral can provide one last party, similar to an Irish wake. In general, while being around a person nearing the end of their life can be emotionally challenging, creating more opportunities to spend time with them can be beneficial for everyone involved.

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Returning to Our Roots

— The Rise in Human Composting

More Americans are turning to human composting—now legal in six states—to avoid the environmental pitfalls of mainstream deathcare.

by Britany Robinson

Frederick “Fritz” Weresch planned on becoming a math teacher or a famous actor. He was empathetic and diplomatic, known to gently encourage the shy students to speak up in class. The high school senior loved music, learned the piano as a child, and had recently taught himself to play guitar.

He also, according to his friends, had talked about wanting to be composted after he died. His parents, Eileen and Wes Weresch, wanted this for themselves, too. They just never imagined they’d be carrying out Fritz’s wishes before their own.

Fritz, 18, was found unconscious on November 30, 2022. He died six days later from unknown but natural causes, according to his family,

His parents are still wading through the thick of mourning. “Grief brain” is making it hard to remember certain details about the months since Fritz’s death, Eileen said. But one thing she and her husband feel good and confident about was their decision to have Fritz’s body undergo human composting, also known as natural organic reduction or “terramation.”

Human composting is the process of turning human remains into nutrient-rich soil. It’s an option that avoids the environmental pitfalls of more mainstream practices: cremation releases carbon dioxide and air pollutants, and casket burial typically involves hazardous embalming chemicals and nonbiodegradable materials.

It’s a practice that some say could shift the United States’ $20 billion deathcare industry. More than 52% of Americans are interested in “green burial,” according to a 2019 survey from the National Funeral Directors’ Association (NFDA).

Six states have legalized human composting in the last four years. Washington state, where the Wereschs live, was the first, legalizing the process in 2019.

“There’s this romanticism to it,” said Haley Morris, a spokesperson with Earth Funeral, a human composting facility in Auburn, Washington. “So many people want to turn into a tree.” But at the root of this romantic idea is something that’s increasingly possible, Morris explains: “For your final act to do good for the Earth.”

When Fritz died, Eileen and Wes approached Return Home, a Seattle-based company, to care for his remains and host a laying-in ceremony. His body was placed in a large, white, reusable vessel on a bed of organic materials—straw, alfalfa, and wood chips. Loved ones added flowers and notes to the mix. Fritz’s best friend cut off his long, curly black hair to lay with Fritz, prompting other attendees to leave locks of their hair as well.

“We got to be there and be part of the process,” Eileen said. “Our culture has made dead bodies icky or scary and that’s not the case.” She said something doesn’t feel right about seeing an embalmed body. “But [Fritz’s] body felt so right. You could hold his hand, and it felt like holding his hand.”

With Eileen’s permission, Return Home captured and shared a video of the ceremony to Tik Tok, where it has more than 600,000 followers.

“The first and most important thing we need to do is win over hearts and minds,” said Micah Truman, the founder of Return Home. He said one way to do that has been to normalize and provide explanations on human composting via social media.

“There’s this romanticism to it…for your final act to do good for the Earth.” — Haley Morris, spokesperson, Earth Funeral

Human composting, or as Return Home calls it “terramation,” is typically an eight to 12-week process, depending on the provider. Once a body has arrived at a human composting facility, they’re placed in a reusable vessel. Some providers, like Return Home, offer funeral services or a “laying-in” ceremony, after which the vessel is sealed and naturally occurring microbes begin to decompose the body. Rotating the vessel along with careful control of temperature and moisture levels also help the process along. Details vary across providers, including how bones are dealt with. At Return Home, they’re removed after one month, reduced to tiny shards, and returned to the vessel to continue decomposing.

The resulting soil, about one cubic yard, can be used to plant trees, spread in gardens, or saved however the family sees fit. Some families opt to donate soil to a nature preserve or land restoration project, Morris said, adding that Earth Funeral owns five acres on the Olympic Peninsula where they send donated soil.

Until recently, most Americans were buried in caskets. Casket burial typically involves embalming the body with chemicals, including formaldehyde, menthol, phenol, and glycerin. Every year in the U.S. 800,000 gallons of formaldehyde go into the ground with embalmed bodies, according to the Green Burial Project. Formaldehyde is listed as a probable human carcinogen by the Environmental Protection Agency, and according to a study by the National Cancer Institute, morticians have a significantly higher rate of myeloid leukemia.

In addition to toxic chemicals, casket burial uses an abundance of materials—concrete, wood, steel—for a single purpose, which are then left in the ground. Land usage is another concern. Cemeteries use up land that might otherwise offer natural habitat to wild animals or housing for humans, covering those acres with monoculture lawns treated with petrochemicals. The space to do this, especially near population-dense cities, is becoming scarce. A traditional funeral with a casket burial is also expensive. The median cost in 2021 was $7,848, according to NFDA.

Today, slightly more Americans opt for cremation, a cheaper and less land-intensive option than burial, but one with its own problems. The impact of burning corpses on air quality made headlines in 2020 when Los Angeles county was forced to suspend limits on the number of cremations due to a backlog of bodies from the coronavirus pandemic. Those limits exist because cremation releases air pollutants, including particulate matter. Most of these are filtered out by post-treatment systems, but cremation still emits about 573 pounds of carbon dioxide—the equivalent of a 500-mile car journey—per corpse.

From a financial perspective, human composting typically costs less than casket burial and more than cremation. Return Home’s standard pricing is $4,950.

Eileen Weresch first heard about human composting on an NPR segment back in 2019. She researched the process and, that night, brought it up over chicken fajitas with her family.

“I was fascinated,” said Eileen. “We talked about how it’s carbon capturing instead of carbon emitting; how it’s going back to our roots.” And so it was decided: Eileen and Wes wished to undergo human composting when they died. Eileen recalled that Fritz, “was super into it, too.”

Fritz was an organ donor. While Wes and Eileen held vigil during their son’s final days on life support, they heard from several of Fritz’s friends. They wanted Fritz’s parents to know he had told them he wanted his body to be composted when he died. Those friends, along with hundreds of classmates and loved ones, lined the halls of the hospital for Fritz’s “honor walk,” when Fritz was wheeled to the operating room where his organs were prepared for donation.

“I believe that in the future, medical science will prove that at least one aspect of what we call ‘love’ resides in our physical bodies and ourselves,” Eileen told those who had gathered to say goodbye. After Fritz died, his body was transported to Return Home.

“I believe that in the future, medical science will prove that at least one aspect of what we call ‘love’ resides in our physical bodies and ourselves.” — Eileen Weresch, Mother to a terramated young person

Truman, the founder of Return Home, was an investor when he first heard about human composting. He’d been looking for a new focus in life. “I’d come to the conclusion that infinite growth in a finite world is madness,” he says. He wanted to build a company where “the bigger it gets, the better the world gets.”

After first hearing about human composting, he couldn’t stop thinking about it. At first, it struck him as odd. But the more he talked to people who loved the idea of becoming soil after death, the better he understood the appeal. “Love it or hate it,” he says, “this idea will live in your head rent-free. I just had to do it.” He opened Return Home in June of 2021.

Rob Goff, executive director of the Washington State Funeral Directors Association, says they receive calls from all over the world, from people who want to know more about human composting, which is estimated to become a $1 billion industry. Traditional funeral homes in Washington are responding to this demand, many of which have added human composting as a line item, working with providers to transport bodies to their facilities.

Human composting as practiced by startups like Return Home isn’t the only way to lessen the environmental burden of deathcare, said Carlton Basmajian, urban planner and author of Planning for the Deceased. The terramation process is best understood as an alternative to cremation because the body is broken down in a facility and the family is given the remains at the end of the process. He said he sees more promise in so-called “natural” or “green” burials, which entails designating land for the burial of bodies without chemicals or coffins. (Many of these sites, including one that Eileen approached, only allow for burials during warmer months when the soil is soft.)

“[Natural burial] has the potential to allow us to preserve and rehabilitate larger areas of land,” said Basmajian.

Truman said he believes the process at Return Home gives families more time to grieve, compared to the long-standing traditions of the funeral industry. With human composting, families can visit their loved one’s vessel throughout decomposition. They can call and check in on how the process is going. The traditional funeral industry, Truman says, has turned grieving into a 48-hour process, but many find that insufficient. “We hurt, and we do it for a long time.”

In February, more than two months after Fritz died, Eileen received a call notifying her that Fritz’s body had completed its transformation into soil. She and her husband are now making plans to distribute his remains to loved ones and build a memorial garden in his honor.

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How Does Hospice Care Work?

— Hospice offers crucial end-of-life care with a focus on the patient’s comfort and dignity. Experts explain who is eligible, what it entails and how to understand and navigate the process.

By Dana G. Smith

In February, the Carter Center announced that former President Jimmy Carter had decided to stop receiving medical interventions and had transitioned into hospice care at home. The cause of Mr. Carter’s decline was not revealed, but the 39th president, who is 98, has been public about health issues he has faced in recent years, including melanoma — a skin cancer that spread to his brain and his liver — and numerous falls.

Hospice provides end-of-life palliative care with a focus on the patient’s comfort and dignity. Pain relief is a priority, while treatments intended to prolong life are discontinued. Hospice agencies offer access to physicians, nurses, health aides, social workers and chaplains who assist patients and their families with everything from symptom management to funeral arrangements. The care is typically provided where the patient lives, whether that’s at a private home or in an assisted living facility.

“When people are close to the end of their lives, going to the hospital does not make them feel better anymore, because there’s not necessarily something that we can do to address their underlying illness,” said Dr. Carly Zapata, an assistant professor of medicine at the University of California, San Francisco, who specializes in palliative care. Hospice “is really focused on caring for people — and their caregivers or loved ones — to help them have the best quality of life possible for the time that they have left.”

Here’s what hospice care entails and how to decide if and when it’s right for you or your loved one.

Who is eligible for hospice care

To receive hospice care, a person must have a terminal diagnosis with a prognosis of six months or less to live. In most cases, a physician recommends hospice; patients and their families can also take the initiative and contact hospice agencies, although a doctor must attest that a person meets the qualifications.

“It’s a hard conversation to have,” said Dr. David Casarett, a professor of medicine and section chief of palliative care at the Duke University School of Medicine. “Enrolling in hospice means that you have to confront that person looking back at you in the mirror and realize that you’re going to die.”

Most people receive hospice care for less than one month. In the rare instance that a person lives longer than six months while in hospice, a physician will re-evaluate the person’s health to assess whether the patient still qualifies.

Many people would benefit from enrolling sooner so that they can receive hospice services for months instead of weeks, Dr. Casarett said. But, he acknowledged, “that doesn’t work for everybody — many people really want to continue aggressive treatment up until the very end.”

Hospice is provided regionally, so the first step is to search for agencies that serve your county. Nursing homes and assisted living facilities usually have contracts with one or two local hospice agencies.

Medicare covers the cost of hospice care. (In most cases, the people who require hospice are on Medicare because they are over 65 or have a qualifying disability.) Medicaid and private insurance also typically cover the service, although just like any other health care cost, your insurance may require that you use a specific provider. For people who are uninsured, some hospice agencies operate as nonprofit organizations or provide services free of charge.

If several options are available, “I really strongly recommend that folks talk to more than one hospice” to find an agency that best matches their needs, said Katie Wehri, director of home care and hospice regulatory affairs at the National Association for Home Care and Hospice.

“There are requirements from Medicare that all hospices have to abide by,” Ms. Wehri said. “But then hospices can also choose to deliver additional services, and how they deliver those services is really up to them.”

Ms. Wehri’s organization provides a list of questions for families to ask when talking to potential hospice providers, such as: “What kind of out-of-pocket expenses should be expected for hospice-covered services?”; “How often will a hospice team member visit, and how long will most visits last?”; and “What happens if I need to go to the hospital or the emergency room?”

Dr. Zapata also advised asking about how medical care will change when the patient enters hospice, such as which treatments and medications will be stopped and who will oversee care. Hospice agencies employ their own physicians, but if you have a strong relationship with a primary care provider or a specialist you’ve been seeing, you can request to have that physician continue to supervise care.

“Sometimes people enroll in hospice expecting everything to be the same,” Dr. Zapata said, and when that isn’t the case, it can be “an unwelcome surprise.”

What hospice care entails

Hospice care is most intensive at the beginning, when a person starts the transition, and at the end, as the person is closer to dying. Hospice agencies provide a range of services, support and supplies to help during the end-of-life stage, including medication management, such as for pain, nausea and depression; equipment like hospital beds, wheelchairs or oxygen; help with navigating legal documents and medical bills; and bereavement services for family members.

Nurses are the hospice providers who visit most often. Appointments may be scheduled every day, but more typically they occur one or two times a week. The nurse will check vital signs, ask about symptoms and consult with the supervising doctor about the need for any changes in medication. The nurse also educates caregivers about how to administer medicines or how to assist with a patient’s personal care, like bathing.

Hospice teams provide crucial emotional and logistical support, as well. Social workers might assist in setting up a will, power of attorney or funeral arrangements. Spiritual care providers — religious or nondenominational — can help a person come to terms with the end of life through prayer or facilitating conversations with loved ones.

For all the benefits and services offered through hospice, though, it does not provide round-the-clock, in-person assistance. If a person is undergoing hospice at home, “It is the patient’s family or friends who are often providing care to them,” Ms. Wehri said. (In assisted living facilities, staff members will administer care.)

Because of this reality, “hospice almost never provides the level of support that families expect,” Dr. Casarett said. “That’s nothing against hospice; it’s just when you’re trying to take care of somebody who’s dying at home, you need all the help you can get.”

If someone’s needs are beyond what can be managed at home, many hospice agencies have inpatient facilities, or they work with a hospital or a nursing home. But those inpatient stays are intended to be used for temporary, acute concerns, such as if medication needs to be administered intravenously, and insurance will often cover them for no longer than a week.

For people who live alone, or if receiving care from family is not an option, it may be necessary to hire a home caregiver or to move to a nursing home. Unfortunately, these options can be expensive and are not typically covered by insurance. Experts say this is the biggest challenge when it comes to hospice care.

When a loved one is being cared for at home, a “beautiful part” of hospice is that, logistically, it doesn’t really require any preparation, Dr. Zapata said. The people who deliver the medical supplies will rearrange your furniture to fit a hospital bed. The social worker will help make sure advance directives are taken care of.

Instead, she said, the preparation that’s needed “is the acknowledgment that someone is getting close to the end of their lives” and deciding how to make the most of that time.

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What I learned about grief from working at a funeral home

— Talking about death, grieving and deathcare options can be positive

By Heather Taylor

When I tell people I worked at a funeral home, I expect one of several responses: they are surprised, change the subject or express how depressing they think the job is. There were some sad days during my two years of work as a funeral arranger in the deathcare industry, but I felt great satisfaction in helping and supporting people during a hard and stressful time. The lessons I learned from having a front-row seat to hundreds of families’ grief have remained with me, and there is a benefit to sharing those lessons with others.

The importance of talking about death, dying and grieving is not always fully understood in our culture and it is often treated as taboo. A 2022 study by a life insurance company, Ethos, found while Americans think about death frequently, they do not talk about it. Among other topics considered to be inappropriate or uncomfortable in polite society including money, sex, politics and religion, the study stated people would prefer to talk about anything other than death.

Despite this unwillingness or inability to talk about dying, it is a universal experience. Everyone will die, and will experience the death of people they love, whether they discuss it or not.
There have been increased efforts to start discussions around death and grief recently, as people question established funeral practices and challenge cultural norms. Organizations like The Order of the Good Death and Death Cafe began to give an appropriate forum to talk about more morbid topics.

Caitlin Doughty is a funeral professional and the creator behind the YouTube channel “Ask a Mortician.” In her book, “Smoke Gets in Your Eyes,” she writes about why it matters to talk about these issues and how speaking about death can positively impact grief.

“It is never too early to start thinking about your own death and the deaths of those you love,” Doughty said. “Accepting death doesn’t mean that you won’t be devastated when someone you love dies. It means you will be able to focus on your grief, unburdened by bigger existential questions like ‘Why do people die?’ and ‘Why is this happening to me?’ Death isn’t happening to you. Death is happening to us all.”

I saw firsthand how families were able to address their grief around the death of a loved one when they were better prepared for it. Of course, there are instances of tragedies that catch people off guard, but generally being at least a little prepared for death and funeral proceedings provides more time and mental capacity to grieve the loss.

“It is never too early to start thinking about your own death and the deaths of those you love.”
— Caitlin Doughty

Another important lesson I learned about grief while assisting families is there is no singular way to grieve death.

As I worked answering phones, greeting people and taking information for death certificates, I had the privilege of talking to people of all ages, races and religious affiliations. All had experienced the death of someone they knew, but beyond that, they did not share much in common.

Some people were relieved that an elderly family member was no longer experiencing pain or chronic illness. Some were hysterical over the death of someone lost at a tragically young age. Others came in a numb state or were ready to get down to business.

I spoke to people who wanted to tell me their whole family history or love story. Others hadn’t heard from the deceased in years and had little to share.

One young woman around my age conducted herself with an almost preternatural composure for the entirety of her father’s funeral, only to break down in sobs when it was done. She told me she felt selfish because she didn’t want to take away attention from her dad, but over the course of the previous week, the rest of the family forgot her birthday had come and gone.

One of the questions I heard repeatedly was a variation of “What am I supposed to do? Is this normal?”

But there is no single way to grieve, and no way that is inherently right. Grief has as much to do with the person who died and all they represented as it does with the people who are living.

Over the years, there have been different theories and models created to explain the process of grieving. Perhaps the most well-known is the concept of the five stages of grief.

This model of grieving was originally introduced in the late 1960s by psychiatrist Elisabeth Kubler-Ross. The main takeaway from this framework was people may feel or work through emotions of denial, anger, bargaining, depression and acceptance when facing a loss.

Kubler-Ross updated the concept of the stages of grief over time, writing with David Kessler in “On Grief and Grieving”:

“They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss as there is no typical loss. Our grief is as individual as our lives.”

Kubler-Ross acknowledged that people who reach the acceptance stage have not necessarily conquered grief. A misquoting or misunderstanding of the stages has contributed to the idea that a person can work through the stages and then move on.

This framework can still be helpful in letting people know the emotions they feel are valid and acceptable.

“Our grief is as individual as our lives.”
— Elisabeth Kubler-Ross & David Kessler

However, there is another theory around grief that was introduced to me while I was working in the funeral industry which I have found more helpful and accurate to people’s experiences.

The concept of “growing around grief” was introduced by a grief counselor, Lois Tonkin, in 1996. Tonkin had spoken to a mother who lost a child and participated in an Elisabeth Kubler-Ross workshop to address her grief.

Rather than finding that her grief had disappeared as she worked through her emotions, the mother reported it instead stayed the same size, but with time “her life grew around it.”

Tonkin illustrated the model with a simple graph showing a large, white circle representing life, with a smaller, shaded circle within meant to represent grief.

“There were times, anniversaries, or moments which reminded her of her child, when she operated entirely from out of the shaded circle in her life and her grief felt just as intense as it ever had,” Tonkin wrote. “But, increasingly she was able to experience life in the larger circle.”

In the immediate aftermath of a death, it can be hard to imagine life will go on. While I was working, I often saw families over the course of several weeks or months after a death had occurred. With time and further life experiences, their grief did not disappear, but they were able to function and forge on.

Tonkin’s concept of grief is encouraging in these instances because it does not imply a person will forget their loved one or shrink their grief, but rather add to their own life after loss.

“In this way, they continue the process of integrating the loss with their lives and moving forwards,” Tonkin wrote.

Table with a photo of an elderly woman, a cremation urn, and a hand placing flowers.
Cremation is a popular method of disposition, but should it be one of the only options?

It may also become easier to grieve as Americans work toward offering increased options for deathcare and the disposition of remains.

In the past, funeral activities were primarily managed at home, allowing the family to take part in meaningful rituals. Around the time of the American Civil War, the practice of embalming was popularized, and in the years following, deathcare became industrialized and commercialized, moving from inside homes to behind closed doors.

In the 1960s, around the time of Jessica Mitford’s book “The American Way of Death” which criticized the funeral industry, cremation began to rise in popularity. It was seen as a more cost-efficient form of disposition.

Today, burial and cremation are the primary options available to Americans. For those who have not made plans ahead of time, the process falls upon family members who can feel overwhelmed and left without sufficient options.

“Choice doesn’t enter the picture for the average individual faced, generally for the first time, with the necessity of buying a product of which he is totally ignorant, in a moment when he is least in a position to quibble,” Mitford wrote.

The high cost of funerals, along with the limited choice and opportunities for personalization add stress to families and leave them wondering if they made the right decisions.

While I was working, I saw people seek out ways to incorporate creativity into arrangements for their deceased friend or family member, and I saw how satisfying this could be.

There were instances of people bringing in nontraditional items to use instead of cremation urns, including canning jars or teapots belonging to the deceased. The local Indigenous community built their own caskets for tribal members on several occasions, creating something personal through community effort, often emblazoned with farewell messages and signatures.

These were ways to work around the impersonal and often more expensive options available, and they were a truer representation of the person who had died.

Thankfully, though I was only able to offer burial and cremation options while I was working, increased choices should be available to some states soon.

California recently decided to allow alternative disposition options including alkaline hydrolysis, commonly known as “aquamation” and terramation or “human composting.” Human composting will not be available until 2027, as requirements and standards are currently being put in place.

Both options are more environmentally friendly than traditional cremation, and existing terramation companies have shown an interest in involving families in the process and offering personalized service.

Green burials, where a body is not embalmed or buried in a traditional casket are legal, but often cemeteries will require specific items which make green burial impossible. Cemeteries dedicated to green burials or conservation burials are gaining interest, but are still less available than traditional options.

Further education and discussion about these topics can only open the door to providing more options for grieving families to feel they are honoring their loved ones in ways that bring them satisfaction. Through researching and spreading the word about alternative burial and cremation options, we can assist in opening the door for legislation to allow them. This can also lead to pressuring existing businesses to offer a broader range of services.

A skull vase full of blue, white and purple flowers sits next to a sign that reads "people are dying to work with me."
Humor can help too! This was my desk decor at my funeral home job.

I can’t claim that I have attained a level of enlightenment from my experiences in the funeral industry that will keep me from feeling grief when those close to me die. In fact, I know the opposite will be true and their losses will hurt deeply. However, I’ve seen from the example of others that life can and will go on.

I also hope through supporting legislation and education about increased options for deathcare, I may be able to provide my loved ones and eventually myself with an appropriate, fitting end. Personally, I want to be buried in a green burial cemetery or composted!

From what I have learned, I hope I have a better grasp on the concept of my own mortality, and I am able to offer more grace and empathy to others in grief — and to myself. Those are the values I find most important from the lessons I’ve been fortunate enough to learn from both the living and the dead.

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Psychedelics in ancient Greece

— Death and rebirth during a renowned religious ceremony

The

Going back as far as 3,500 years ago in ancient Greece, followers of a cult to the goddess Demeter participated in a secretive and profound religious ceremony during which they consumed a hallucinogenic drink. The rituals were meant to reenact the story of the goddess’ loss of her daughter to the god of the underworld, and their subsequent reunion. 

Symbolizing death and rebirth, the ceremony, called the Eleusinian Mysteries, was meant to elicit feelings of awe, joy, and spiritual enlightenment, and to give followers a deeper understanding of life and death. Amplified by the consumption of a psychedelic potion, the ritual is thought to have brought on a mystical out-of-body experience, similar to how many people today describe a psilocybin or LSD trip. Psychedelics are having a resurgence today, and research shows the many benefits of the substances, including, simply, leading a fuller life and feeling more connected to the world. The Mysteries were an essential rite of passage to many ancient Greeks, and their importance is hard to understate. These ancient perceptions of psychedelics and the Mysteries can help us understand the power of these substances and the benefits they offer today.

What were the Eleusinian Mysteries?

Eleusis is a town just northwest of Athens, Greece, an agricultural society out in the countryside, and a setting ripe for a cult to Demeter, the goddess of the harvest and the bringer of a bountiful crop. More importantly, it’s a place where wheat or barley likely grew, which are the probable sources of the psychedelic substance in the kykeon, the psychedelic drink consumed during the Mysteries.

Meaning “to stir, or mix” in Greek, the kykeon was thought to have contained an ergot fungus from the barley plant, a substance similar in structure to today’s LSD. There is some debate as to whether the kykeon was psychedelic or not, but famed chemist Albert Hofmann, most known for discovering LSD, makes a strong case for the ancient Greeks having access to this psychedelic fungus.

The origin of the Eleusinian (usually pronounced el-oo-SIN-i-an) Mysteries is somewhat hazy, but it stretches back to at least 1500 BCE, if not before. People from all walks of life took part: rich, poor, men, women, slaves, foreigners; as long as you could speak Greek, you could participate. Even some Roman emperors participated.

For six months before the ceremony, participants learned rites and rituals for the ceremony—called the “lesser Mysteries”—and then in the fall, it began: Participants walked in a procession from Athens to the temple of Demeter at Eleusis, spent nine days there, and then walked in a procession back to Athens, renewed by the experience.

The treks to and from the temple likely symbolize Persephone’s descent to the underworld, and then her ascent back to the land of the living to be with her mother (more below). At the temple, not much is known—hence, why it was called the “Mysteries”—because speaking of the rituals was punishable by death. There is some evidence of animal sacrifice, and the psychedelic kykeon was consumed during the time at the temple. 

Persephone is a fascinating figure in Greek mythology, straddling the line between life and death: She is both daughter of the harvest and queen of the underworld. Every year, she dies and is reborn—in revering her, the ancient Greeks sought to find out what secrets she held of life and death.

In polytheist ancient Greece, Demeter was the goddess of the harvest, responsible for a bountiful crop, which fed humankind, whom the gods created in their image. She had a beautiful daughter named Persephone (usually pronounced per-SEH-fuh-nee), who caught the eye of Hades, god of the underworld. One day, Hades abducted Persephone, taking her to the underworld to be his wife. While there, she ate the seeds of a pomegranate, imprisoning her there, according to divine law.

Demeter was inconsolable at the loss of her daughter and so the crops withered and died, and humankind began to starve. The goddess searched for her daughter for nine days and ended up in the town of Eleusis, where the town took her in. Eventually, she commanded them to build her a temple, where the Mysteries eventually took place.

The other gods were distraught at the humans dying, so Zeus, king of the gods, went down to the underworld and struck a deal with Hades: For half of the year, Persephone would reside in the land of the living with her mother, Demeter, and for the other half, she would live in the underworld with Hades as his wife.

When Persephone came back to the land of the living, Demeter was overjoyed and the crops flourished; but six months later, Persephone had to return to the underworld, Demeter became sad, and the crops began to wither and die again. The cycle repeated year after year.

Persephone’s story explains the changing of the seasons in ancient Greece: fall begins with her descent, Demeter’s sorrow, and the crops dying, and spring occurs with her ascent back to the land of the living, Demeter’s joy at their reunion, and the crops flourishing.

What purpose did the Mysteries serve?

There’s no doubt that the Mysteries were a rite of passage to many in ancient Greece. The intense, six-month preparation for the ceremony and the diversity of people who participated in them point to the importance of the experience across ancient Greek culture. The ceremonies also existed for more than 2,000 years, and it took the spread of Christianity to wipe out the practice.

The spiritual aspects of the ceremony relating to the goddesses Demeter and Persephone are obvious, but when the practice of drinking the psychedelic kykeon is added to the experience, the Mysteries gain a deeper, more profound meaning.

The way that ancient Greeks described these ritualistic experiences are similar to modern descriptions of tripping on psychedelics. Even the benefits that Greeks received from participating in the Mysteries mirror the benefits of psychedelics consumed in scientific studies today, including opening the doors to a more fulfilling and satisfying life, better coping with loss and death, and gaining a deeper understanding and appreciation of the world, among others.

We have the advantage of scientific study today, and current research shows the benefits of “mystical experiences” brought on by psilocybin, as well as “experiencing God” or an “ultimate reality,”  resulting in greater life satisfaction, purpose, and meaning, even decades after the initial psychedelic experience.

Some descriptions of what participants underwent during the Mysteries are similar to the experience of ego death today, or the loss of self, often experienced during a psychedelic trip. Disassociation, hallucinations, fear, joy, a mix of other emotions, and a deeper understanding of the world are all experiences described during both the Mysteries and a psychedelic trip. The dissolution of the ego can lead to the feeling of oneness with the world, helping to break unhealthy thoughts and behavior patterns.

Participants were also said to have returned from the ceremony full of joy and happiness, with the fear of death diminished. Philosopher Plato reportedly participated, and said that the Mysteries were a purifying experience, and those who participated “shall dwell with the gods.” Ancient texts talk of the intense sensory experience of the Mysteries, speaking of a “marvelous light” and a “huge fire,” perhaps similar to hallucinations seen while on psilocybin or LSD.

Today, psilocybin and other psychedelics are also being used to treat end-of-life anxiety and help people with terminal illnesses cope with death. In another study, 67% of participants rated a psilocybin experience to be the single most meaningful experience of their life, or in the top five most meaningful experiences.

The Greeks knew the power of the Mysteries and the kykeon, and closely guarded their secrets. Psychedelics, and the story of Persephone’s continual death and rebirth, can help us all come to terms with death and appreciate life for what it is.

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Ushering Pets Gently to the End

— A caring and dignified death by in-home euthanasia can help bring solace to grieving pet owners

Kerri Miller’s dog, Cookie

By Kerri Miller

The first message I left on the veterinarian’s phone last winter was so distorted by tears and grief that I had to call back twice to repeat the details.

It had been 26 hours of sleeplessness and stress since our older shepherd’s legs had given way beneath her and I realized she wouldn’t be able to stand again on her own.

We were fast approaching a moment where her diminished quality of life — she wasn’t eating much and had given up on our daily walks — was edging into suffering. My husband and I anguished over what we knew was inevitable. We’d used in-home euthanasia services when our previous dog had developed cancer, but I think I would’ve been comforted if I’d known about the advice that veterinarians like Dr. Kenzie Quick gives to clients in times like these: “Better a moment too soon than a day too late.”

“This little buddy of mine has seen me through so many things that no one else has.”

Quick, a Tucson, Arizona, staff veterinarian with Lap of Love, a company that provides in-home hospice and euthanasia service for pets, acknowledges that knowing exactly when to make the decision to put a companion animal out of their pain is a delicate one. “There is no perfect time,” she says. “Any time between when their quality of life is no longer good but they’re not suffering. Any time in that zone is the time to say goodbye.”

Saying goodbye to Rex, Heather Boschke’s Yorkie/Pomeranian mix, was something she dreaded. “He’s seen me through job transitions, two boyfriends and one fiancé. This little buddy of mine has seen me through so many things that no one else has.”

But at sixteen years old, Rex had advanced kidney disease, wore diapers and was struggling to walk. Boschke and her husband reached out to friends who recommended MN Pets, Minnesota-based in-home euthanasia care.

What she found, Boschke says, was empathy and, most important, confirmation that she was making the best decision for Rex. “The memory we have of his passing was caring and dignified.”

Paradox of Difficult Yet Fulfilling Work

Quick believes that’s an essential part of her interaction with the pet owner, from the first call to the moment when the animal is gone. “My role is to come in, be calm, validate their decision and then to take really good care of their pet. To let them know that I have this under control and to provide that peaceful transition,” she explains.

A woman holding a small dog. Next Avenue, in-home euthanasia for pet, putting pet down at home
Heather Boschke and Rex

Dr. Karen Fine, a veterinarian and author of “The Other Family Doctor,” writes that when she began making house calls and offering in-home euthanasia services, she had to learn to be comfortable “around grief and intense emotions.” She adds, “I often felt like I didn’t belong in the sacred space between human and animal at such a pivotal moment.”

The number of vets who specialize in in-home euthanasia has grown over the last several decades, but overall, there is a shortage of practicing veterinarians. That means that the demand for in-home services like hospice and euthanasia has skyrocketed.

Kristi Lehman, a veterinary social worker for MN Pets, worries about the demands on the doctors and staff. “Our team is being pushed to their physical limits with how many families they can see and how many appointments they can drive to. So, there is a lot of discussion about our doctors’ quality of life.”

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