In Difficult Cases, ‘Families Cannot Manage Death at Home’

Health care researchers argue that hospice facilities could better serve some terminal patients, and ease the burden on exhausted loved ones.

A hospice and palliative care center in Corvallis, Ore. Although most people say they wish to die at home, it’s not always the best course, some health experts argue.

By Paula Span

Where do people most want to be when they die? At home, they tell researchers — in familiar surroundings, in comfort, with the people they love.

That wish has become more achievable. In 2017, according to an analysis in The New England Journal of Medicine, home surpassed the hospital as the most common place of death — 30.7 percent of deaths occurred at home, compared with 29.8 percent at the hospital.

“It’s probably the first time that’s happened in the United States in modern times,” said Dr. Haider Warraich, a cardiologist at the Veterans Affairs Boston Healthcare System and an author of the study, published in 2019. Technically, the proportion was even higher, since some people who died in nursing facilities (20.8 percent) were long-term residents and the nursing home effectively was their home.

Dr. Warraich credited the change to the rise of hospice care, for which Congress authorized Medicare coverage 40 years ago. By 2019, more than half of Medicare beneficiaries who died were enrolled in hospice. “There’s been a cultural shift,” he said. “People don’t want to die in hospitals, and hospice helps make that possible.”

But not always.

When Lee Zeiontz was dying of lung cancer, she wanted to remain in her apartment on the Lower East Side of Manhattan with her cat on her bed and her neighbors stopping by. Lynda Hollander, her niece, hired a round-the-clock aide to supplement the hospice staff.

But Ms. Zeiontz’s pain eventually intensified and her older relatives were uneasy about administering morphine. “I think they were afraid of her dying at home,” said Ms. Hollander, a social worker in West Orange, N.J. They moved Ms. Zeiontz to an inpatient hospice unit at Mount Sinai Beth Israel Hospital, where she died a day and a half later, at 70.

Similarly, Alan Mironer had vowed to care for his wife, Lynne, with hospice help in their home in Edina, Minn., as she died of breast cancer. “He felt it was his responsibility,” their son, Mark, said. But as she weakened and became unable to walk to the bathroom, he said, “suddenly, it was so much more work to take care of her.” The elder Mr. Mironer, then 81, became overwhelmed.

Neighbors told them about a small hospice facility in Edina, with room for eight patients. Ms. Mironer spent her final week there, dying at 78.

Such experiences prompted an article this month in The New England Journal of Medicine that pointedly asks, “Is There Really ‘No Place Like Home’?”

The lead author, Dr. Melissa Wachterman, a palliative care specialist at Harvard Medical School, and her co-authors argue that alternative locations, including free-standing inpatient hospice facilities and hospice units within hospitals, could better care for some terminal patients with difficult symptoms and provide relief for exhausted families. They also contend that financial incentives play a role in where death occurs.

“There’s a lot of cultural pressure: ‘If you really loved this person, you’d keep them at home,’” Dr. Wachterman said in an interview. “We need to acknowledge that there are people whose needs are so great that families cannot manage death at home.”

Ninety-eight percent of hospice patients covered by Medicare receive what is called “routine home care.” The hospice organization sends nurses, aides, a social worker and a chaplain, in addition to drugs and equipment like a hospital bed, to the patient’s home. But it can’t provide 24-hour care; that falls to family or friends, or helpers paid out of pocket.

Often, that’s sufficient. But death can follow unpredictable trajectories, and some terminal conditions appear better suited to home death than others. Cancer patients have the greatest odds of dying at home, Dr. Warraich’s analysis showed. Patients with dementia are most likely to die in a nursing home, and those with respiratory disease in a hospital.

Some patients “may not need someone at the bedside 24 hours a day, but they need someone available 24 hours a day,” Dr. Wachterman said.

A handful of hospice patients receive “continuous home care,” which means nurses and aides are provided eight to 24 hours a day; this accounts for 0.2 percent of hospice days, according to the Medicare Payment Advisory Commission, an independent agency that advises Congress on Medicare issues. Another handful receive inpatient services in a hospice facility, hospital or nursing home.

But inpatient care is hard to secure, accounting for just 1.2 percent of all hospice days in 2019. To be covered under Medicare, the patient must be diagnosed with a symptom that cannot feasibly be managed in any other setting, and “that’s a pretty high bar,” Dr. Wachterman said.

The authors also argue that although Medicare pays more for inpatient care — $1,000 a day, on average, compared with $200 for home care — profit margins are higher at home. More than 70 percent of hospices are now for-profit agencies.

Rankings on the quality of hospital care like those published by U.S. News & World Report may also prompt hospitals, who want to keep their mortality statistics low, to discharge patients to home hospice.

Edo Banach, president and chief executive of the National Hospice and Palliative Care Organization, disputed the article’s financial assertions. “It’s not true that margins are necessarily higher for routine home care versus inpatient,” he said, attributing profit differences to the length of a patient’s stay rather than the setting.

Instead, Mr. Banach primarily blamed a fear of Medicare audits, which are not uncommon, for the infrequent use of inpatient hospice care. “Providers are very reluctant to use that benefit unless it’s also clear that they won’t be hurt by the government on the back end” and forced to return contested payments, he said.

Still, he said there was nothing in the authors’ recommendations that he fundamentally disagreed with, including their calls for changes like financial support for family caregivers who assist dying patients.

The authors also advocate expanded access to continuous home care and lower barriers to inpatient end-of-life care, in hospice facilities (the national organization estimates that about 30 percent of hospices have them) or hospice units within nursing homes and hospitals.

Of the three times I have accompanied family members to their deaths, we achieved the good-death-at-home paradigm once: My mother died at 80, with uterine cancer and after a major stroke, in her own bed. My father and I cared for her, with a hospice team. He died at 90, when sepsis overwhelmed him in a hospital before I could arrange for hospice care at home.

My sister’s death in 2015 showed the possibility of a middle ground. Disabled by late-onset Tay-Sachs disease, a neurological condition, she had been hospitalized with an uncertain prognosis. I was her health care proxy.

As she declined, she developed such severe pain that, between sobs, she was calling for our long-dead parents. I immediately enrolled her in hospice and began planning to move her back to her assisted-living facility, so that she could die in her own apartment.

It soon became clear that would be impossible. In the hospital, hospice nurses visited twice a day, constantly raising the dose of her morphine drip before switching to more potent medications. Having staff nurses always nearby allowed us to provide comfort, relying on a team we never could have duplicated on our own.

To its credit, the hospital understood our needs. It arranged for a private room with 24-hour access for my cousin and me. We turned off the TV and the intercom, dimmed the lights, played soothing music, allowed family and friends to come and kept the vigil. It wasn’t homey, but it was peaceful. My sister, just 62, died after 24 days in the hospital and 14 in hospice care.

Far more hospice patients and families could probably benefit from a similar option when home care proves too difficult.

“For many patients, ‘home’ isn’t the physical place,” Dr. Warraich said. “It’s a metaphor for a place that’s not medicalized, that’s comfortable and full of love.”

Complete Article HERE!

Preparing for your first end-of-life conversation as a resident

By Jules Murtha

Key Takeaways

  • Some healthcare providers struggle to initiate and maintain end-of-life (EOL) conversations with patients due to lack of proper training.
  • Aspects to consider include determining who to include in the conversation, what your goal is, when and where to have it, and how you’ll structure the interaction.
  • General practitioners with experience in EOL conversations cite four important elements: preparation, finding a conversational entry point, modifying your communication to suit the individual, and inviting the family to participate if possible.

Engaging in end-of-life (EOL) conversations with patients requires careful, strategic communication on the part of the physician. For physicians and residents who lack experience covering the complex subject of death with their patients, EOL conversations can be difficult, according to a study published by the Annals of Palliative Medicine.[1]

Good physician communication, however, is central to patient satisfaction during palliative care. Residents can better prepare for EOL conversations by determining the logistics of the interaction beforehand, and tailoring their presentation to the patient’s preferred communication style.

First, focus on logistics

If you’ve yet to have your first EOL conversation in residency—or your first few—you might feel ill-equipped to start one. Even physicians who have established practices struggle to engage in such weighty interactions. Fortunately, there’s a list of questions you can answer prior to the discussion that may pave the way to meaningful results.

An AMA Journal of Ethics article explains the significance of addressing the logistical elements of an EOL conversation before starting one. [2]

These include the following:

Who? Clarify with your patient who exactly they’d like to have present for the conversation. Family members, while supportive, may disagree on treatment options or get swept up in intense emotions. It’s your responsibility as a physician to call everyone’s focus back to the patient. Patience will serve you well in EOL discussions, especially those that include family.

What? Determine what you’d like to accomplish with the conversation. Perhaps your goal is to provide updates on your patient’s prognosis, or deliver important news. On the other hand, maybe now’s the time to ask your patient what their goals of care are, or to relay that information to the family and other caregivers. You decide how much to share about the illness and its prognosis based on what your patient is ready to receive.

Where? Most often, EOL conversations take place at a patient’s bedside. This is largely due to their condition and lack of other space.

Having a quiet room free of interruptions is important for this kind of discussion. Sit near the patient rather than standing above them; this shows that you care and have time for them, and are not in a rush to leave.

When? Schedule EOL discussions when you have time to actively listen and be present for your patient. Be sure to clarify any misunderstandings, offer suggestions, and propose next steps. Try to steer clear of integrating EOL conversations into your routine rounds and office visits, as you might be too busy racing the clock to give your full attention.

How? Having a loose conversational structure may be helpful. Start by naming any goals you may have for the interaction while maintaining the flexibility your patient may require. Ask an open-ended question. Remember that your patient’s needs and ability to accept information are foremost. Listen first. This is likely to be a heavy moment for your patient, fraught with emotional upheaval that prevents them from taking in what you have to say.

“Silence can be golden in these conversations.”
— AMA Journal of Ethics

Taking cues from general practitioners

General practitioners who have had a lot of experience in palliative care conversations have developed a feel for them that can help guide residents in finding their own approach. These strategies, described in a study published by Family Practice, emphasize preparation, alongside three additional tactics to aid physicians in EOL interactions.[3]

Gauge readiness and choose an entry point

According to GPs participating in the study, successful EOL conversations are rooted in a strong patient-doctor relationship. Having already established good rapport and trust with a patient eases the EOL conversation, over and above preparing for it.

It’s important to gauge a patient’s readiness to enter into the EOL conversation. To do so accurately, you should consider the patient’s personality and psychological state.

Observe their demeanor, and pay close attention to any verbal and nonverbal cues they give you regarding their prognosis.

Once you feel you’ve got a good handle on your patient’s current state, focus on finding an appropriate conversational entry point.

There are different ways to do this, as the doctors told Family Practice. You can respond to patients’ inquiries about their goals of care, or implement EOL conversations routinely with patients who could benefit from them. For some patients, the physician might directly address their prognosis, whereas for others, it might be best to test the waters by asking indirect or hypothetical questions about plans for their future care.

Read your audience and involve the family

Two other tactics that GPs use to engage in fruitful EOL conversations are tailoring communication to the patient’s communication style and getting the family involved when it’s appropriate, as noted in Family Practice.

To better reach your patients, you may have to modify your communication style and approach the EOL discussion in increments, rather than all at once. Using a gentle approach for the patients for whom this is appropriate could mean saying something like “The chances of someone living with this for more than two years are very low.” For others, depending on the personalities of both physician and patient, and their relationship, a direct, honest approach may be the most fruitful.

Finally, the patient may choose to have family members in the room during EOL conversations. Some doctors find the presence of family to be valuable for information-sharing purposes and determining the right course of treatment for patients nearing their final days.

What this means for you

Residents who struggle with EOL conversations and  discussions about goals of care may sharpen their skills in a palliative care rotation. In the meantime, prepare for EOL conversations by answering the following: Who will be present? What is the goal? Where is the best place to initiate it, and how soon?

Think about how you can structure the conversation to best meet your patient’s needs. Once you enter into the conversation, adjust your communication to a style that’s most sensitive to your patient, whether this means taking a gentler, or more direct, approach. Finally, involve the patient’s family when you feel it’s appropriate.

Complete Article HERE!

Human-Shaped Sarcophagus in Ancient Tombs Uncovered in Notre-Dame

A picture taken on April 16, 2019 shows an interior view of the Notre-Dame Cathedral in Paris in the aftermath of a fire that devastated the cathedral. – French investigators probing the devastating blaze at Notre-Dame Cathedral on April 15, 2019, questioned workers who were renovating the monument on April 16, as hundreds of millions of euros were pledged to restore the historic masterpiece. As firefighters put out the last smouldering embers, a host of French billionaires and companies stepped forward with offers of cash worth around 600 million euros ($680 million) to remake the iconic structure.

By Miguel Brown

After the Notre Dame Cathedral in Paris burned in 2019, archaeologists have uncovered several tombs from the 14th century in the now “burial site” of “remarkable scientific quality”.

Along with the tombs unearthed was a human-shaped sarcophagus made of lead, ScienceAlert reported. According to the culture ministry, the newly revealed tombs beneath Notre-dame were found during the preparatory and general planning of the restoration works for rebuilding the ancient church

The ministry announced on Monday that the two major discoveries unearthed under the nave and the polychrome fragments of the original 13th-century rood screen of Notre-Dame, will make it possible to document the monument’s history.

The coffin, which was thought to have been made for a senior dignitary in the 1300s, as well as the tombs and some painted sculptures were found just under the current paving level of the cathedral.

During an archaeological visit

On Tuesday, the Agence France-Presse (AFP) and archaeologists visited and delicately excavated sculptures emerging from the ground, including a pair of carved hands, bust of a bearded man, and some sculpted vegetables, with traces of paint.

The team inserted a mini endoscopic camera to peek inside the sarcophagus warped by earth and stones and caught a glimpse of “pieces of fabric, hair and above all a pillow of leaves on top of the head, a well-known phenomenon when religious leaders were buried,” said lead archaeologist Christophe Besnier. “The fact that these plant elements are still inside means the body is in a very good state of conservation,” he noted.

Dominique Garcia of the National Institute of Archaeological Research added that this discovery shed better light on funeral practices in the Middle Ages.

These discoveries happened to be found when reconstruction teams prepared to install huge scaffolding to rebuild the spire, and needed to check the stability of the ground.

A completely preserved anthropomorphic lead sarcophagus

The fully preserved lead sarcophagus was unearthed among the graves in the western part of the excavated site. In the first analysis, archaeologists dated the burial at the latest from the 14th century. Plant remains under the head of the deceased were also identified aside from the hair, fragments of textiles, and organic matter.

The sarcophagus was lying among an underground heating system’s brick pipes from the 19th century. While this find had archaeologists working, they have limited time to do so. The archaeological excavation is just the first step in a study phase and must be completed on the ground on March 25, before the reconstruction project resumes. As for the lead sarcophagus’ removal, it will be carried out in the coming days.

Meanwhile, the sculpted fragments attributed to the 13th century rood screen may be collaborated with the polychromy center of the Historical Monuments Research Laboratory (LRMH), or with the Sculpture Department of the Louvre Museum.

Nonetheless, all the discoveries and every fragment were considered “exceptional interest” for understanding the history of Notre-Dame de Paris – which is proposed to be reopened in 2024, according to CNN.

Complete Article HERE!

After death – what?

Most modern funeral practices don’t do much good for the planet. Manuela Callari takes a look at what happens, scientifically speaking, if nature is allowed to take its course after we die, and emerging options that soften our carbon footprint after our exit.

By MANUELA CALLARI

Overlooking the coastal sandstone cliffs south of Sydney’s CBD, gravestones in Waverley Cemetery stand like sentinels, aligned like a military parade. A Yulan magnolia grows out of the grave of a post World War II Italian migrant, at rest since 7 May 1977. It’s as if it is drawing its sustenance from the deceased.

Life depends on death – a circle that has been going on forever. Saplings grow out of rotting trees, and marine carcasses provide a bounty of nutrients for deep water organisms.

When creatures die, they decompose and become the nutrients that other life forms need to flourish. But most humans end up embalmed and buried, or cremated. Are the rituals we have created messing with this cycle of life?

Some think so. “Green death” trends have emerged in the funeral industry to respond to people’s growing concerns around the ecological burden of traditional burial practices.

The science of human decomposition

First, what happens when a body decomposes out in the open? A little warning here is due: this is not a story for the squeamish. When you die, your heart no longer pumps blood through your veins. Gravity draws the blood towards the ground, where it settles. Your lungs stop functioning, which means you’re not breathing in oxygen or expelling carbon dioxide. As carbon dioxide builds up and dissolves in the pooling blood, it begins to form carbonic acid, which dissociates into bicarbonate and hydrogen ions, making the blood acidic.

Simultaneously, enzymes involved in your cells’ metabolism throughout life begin to digest the cells’ membrane, which, combined with a decreased blood pH, causes cells to rupture and spill out their guts. “Everything starts to break apart,” says Dr Maiken Ueland, a researcher at the Centre for Forensic Science and the deputy director of the Australian Facility for Taphonomic Experimental Research (AFTER) at the University of Technology Sydney.

When your cells begin to crumble, they release nutrients that the human microbiome – all the bacteria, fungi and viruses and other microbiota living in you – love to gobble up, literally eating your body from inside out.

Your microbiome helps digest food and keeps your immune system in good shape throughout life. But when you’re dead, your immune system shuts down, and all of a sudden, trillions of microorganisms have free rein.

The microbiota break down carbohydrates, proteins and lipids, producing liquids and volatile organic compounds as byproducts. These build up inside your abdomen and make you look bloated. After three days of decomposition, these compounds release, causing a distinctive “death” smell. Carbon dioxide, methane, and ammonia gasses are among the contributors. Hydrogen sulphide, also present in farts when you’re alive, plays a critical role. But putrescine and cadaverine, which are formed from the breakdown of amino acids, are the biggest culprits.

Ueland, who studies forensic taphonomy – the process of corpse decomposition – says the gasses emitted from the body as it breaks down attract more fungi, bacteria, worms, insects and scavengers to the banquet. A decomposing body creates a remarkably complex ecosystem, which taphonomers call the necrobiome.

Blowflies are generally early comers. They start to lay eggs from which maggots hatch within 24 hours. One blowfly can lay about 250 eggs, so if a few hundred blowflies lay eggs, there are soon tens of thousands of hungry maggots crawling on your body, ready to contribute to the decomposition process. Larvae consume the soft tissue first, says Ueland. Then the skin falls apart, and all that is left is your skeleton, which will continue to break down for decades.

As the feast goes on, more nutrients are released into the surrounding environment. For every kilogram of dry body mass, a human body naturally decomposing will eventually release 32g of nitrogen, 10g of phosphorus, 4g of potassium, and 1g of magnesium. So an average 70kg live human body, which consists of 50–75% of dry body mass, would release roughly 1,400g of nitrogen, 434g of phosphorus, 174g of potassium and 43g of magnesium after death.

Taphonomers call this puddle of nutrients around a body “the cadaver decomposition island”. Initially, some of the vegetation in this island dies off, possibly because of nitrogen toxicity. But as the nutrients are further digested by bacteria within the island they act as fertilisers, transforming the island into a vegetation oasis.

After death what

Death 1.0: the industrial age

In a typical burial, the body is embalmed and put in a coffin made of oak or elm. The wooden capsule is buried about two metres underground, possibly under a slab of concrete. Formaldehyde is often used as an embalming fluid. It bonds proteins and DNA in the cells together so tightly that the microbiome can’t break it down, preventing tissue from decomposing for decades.

Even if a body isn’t embalmed, the coffin in which it lies hinders the natural decomposition process, and the nutrients released are not easily accessible to the microorganisms and scavengers in the soil.

If you’re not keen on burial, you can always choose to be cremated. Since the 1950s, cremation has become more popular than burial, with about 70% of Australians opting for it. But cremation, too, cuts the circle of life and death short. It transforms a body into mainly three things: ash, water vapour and a lot of carbon dioxide. Not only will cremated bodies not fertilise any vegetation oases, burning them up is far from sustainable.

Aquamation is the fire-free alternative to cremation. All that’s left is a tea-like solution that’s good for plants

According to the Department of the Environment and Energy, a modern cremator uses the equivalent of 40 litres of petrol for an average body. An older crematorium furnace can consume up to twice that amount of fuel.

Cremating a dead body releases about 50kg of carbon dioxide and a bunch of toxins into the atmosphere. And the carbon footprint doesn’t end at the crematorium door.

“What about the 100 people driving to the crematorium, then driving back to Uncle Bob’s house to have a barbecue?” says Kevin Hartley, founder and director of Earth Funeral. “And what about all the catering and all the energy and bits that go into it?”

Hartley estimates that at a typical, small-size cremation and funeral, the event can release up to one tonne of carbon dioxide – the equivalent of driving a petrol car for six months. Fifty trees have to grow for one year to capture just one tonne of carbon dioxide emissions.

Death 2.0: the eco-age

An interest in pared-down, eco-friendly, end-of-life options has grown, ranging from biodegradable pods that turn a body into a tree, to mushroom burial suits that devour dead tissues.

“There’s a whole suite of alternative technologies in this space,” says Dr Hannah Gould, a cultural anthropologist with the DeathTech Research Team at the University of Melbourne. “But alkaline hydrolysis and natural organic reduction are the major alternatives that have legs.”

Alkaline hydrolysis, also known by the catchier name of “aquamation”, is the fire-free alternative to cremation. It produces less than 10% of the carbon emissions of traditional cremation, doesn’t release toxins, and generates nutrient-rich water.

After death what
Give and take: Eco-friendly after death practises that give back are the subject of many start-ups. The Capsula Mundi, above, is an Italian-designed biodegradable casket above which you can plant, and nourish, a young tree. Memory Gardens, such as this one in Le Bono, France, offer the option of depositing ashes under different trees in a headstone-free green space.

The body is placed in a pressure vessel filled with an alkaline water solution of potassium hydroxide or sodium hydroxide or a combination of both, with a pH of 14. The solution is stirred and heated to about 160°C at high pressure to prevent boiling.

In a few hours, the body breaks down into its chemical components. All that’s left is a tea-like solution that is very good for plants, so family can take home the sediment of minerals for scattering.

“The environmental footprint of alkaline hydrolysis is much less than cremation and much, much, less than conventional burial in a graveyard,” says Professor Michael Arnold, a historian and philosopher with the DeathTech Research Team.

According to a report by the Netherlands Organisation for Applied Scientific Research (TNO), the estimated environmental cost for disposal of the dead is about $102 for a burial, $77 for cremation, and $4.15 for alkaline hydrolysis. “It’s a huge factor,” says Arnold.

Aquamation is legal in Australia but not widely available. There are only a handful of companies that offer the service, and, Arnold says, the practice remains little known by most. It was recently in the spotlight after the death of South African archbishop Desmond Tutu, who requested his remains be aquamated. Arnold hopes Tutu’s choice will increase the practice’s popularity.

The other alternative is natural organic reduction, or human composting. The body is placed into a vessel with a mix of soil, wood chips, straw and alfalfa. Microbial activity stimulates decomposition. Within about four weeks, the result is around 760 litres of humus. Family members are welcome to keep some of it; the rest is used as a fertiliser. The world’s first human composting company opened its doors in Seattle, US, at the end of 2020 and has since expanded to four states, but human composting isn’t yet legal in Australia.

The regulatory approval path of a new way to dispose of corpses is tedious. But appealing to the mass market remains the biggest challenge – eco-friendly body disposal is still a niche market.

“People who might want to pick these options tend to be those who are pretty concerned about the environment, who are into sustainability, alternative lifestyle, are a bit hippie,” says Gould. “But there is also a growing cultural desire to return nutrients to the earth.”

Arnold agrees. “A lot of people think that the body is something to be disposed of without much fuss, and cremation is appealing for that reason,” he says. “A smaller group of people think of the body as a resource rather than a waste – a resource that can and should be utilised by other living beings.”

In recent years, natural burial grounds have gained some popularity. Here, the body is buried without embalming in the topsoil, in a softwood or cardboard coffin or a shroud. Usually, there is no gravestone or headstone. Only about 2% of people opt for a natural burial.

Restoration burial grounds

Hartley had worked in funeral services for 15 years when someone asked what his plans were for his body after death. “Being reasonably young, I hadn’t really thought about it,” he says.

It was then that he began to ponder the environmental impact of the furnace he
had operated for so many years, and began to question whether that was indeed what he wanted his final act to be.

Hartley began to contemplate taking natural burial to the next level. “Restoration burial grounds is the term that we favour,” he says.

His not-for-profit organisation plans to convert pieces of distressed land, such as overused farmland on the edges of cities, to burial grounds that offset the cost of burial by “multiple times”.

The bodies will nourish and fertilise the barren land, restoring the native Australian bush. That, in turn, will attract native wildlife and, eventually, the land will be managed like a national park.

Regular natural burial grounds might offset the carbon cost of a burial, but being carbon neutral is no longer enough, Hartley says.

“We put the Earth bank account into deficit,” he says. “We are way overdrawn. We want to put back into the planet.

“Death is part of life. Everything is cyclic. We’re interested in the restoration of the nexus between death and life for people and have a genuine return to the earth.”

It’s a plan that might revolutionise the look of Australian cemeteries – rows of gravestones giving way to Australian native forests buzzing with wildlife.

Complete Article HERE!

What Are Death Doulas?

by

When people say someone had “a good death,” they usually mean that someone was comfortable and not in pain. But what if you could help their final days include the things they treasure — like their favorite song playing, who is at their bedside, even the scent of a candle in the room — so they feel at peace.

That’s why some people turn to end-of-life doulas. They are among the professionals who can help someone prepare for their death and reflect on their life: their greatest joys and regrets, any fears or worries on their mind, and how they want to be remembered.

It’s work that many people don’t want to think about.

“We live in a death-denying culture,” says Elizabeth Johnson, executive director of the Peaceful Presence Project, a nonprofit end-of-life doula collective in Bend, OR. Doulas can be part of the team that helps prepare people for death by opening up conversations about it, as well as providing comfort and resources. Hospice care teams and other palliative care practitioners also work in these areas.

Doulas and Hospice

Hospice care often involves a team of people, such as a social worker, a chaplain, and a nurse who checks a patient’s vitals, administers medication, and changes bandages. Doulas, on the other hand, have no required medical background and do not perform any clinical or medical tasks. They may read aloud to a patient, clear clutter, or sing with someone.

“Doulas are able to step into those unsupported spaces,” Johnson says. Where a hospice social worker or chaplain may visit once a week, “Doulas have more time and bandwidth. They are available for deep listening during acute windows of need,” says Johnson, who is on the board of the National End-of-Life Doula Alliance (NEDA).

Doulas can assist patients outside of hospice, too. Merilynne Rush, RN, a doula in Ann Arbor, MI, and vice chair of the End-of-life Doula Advisory Council of NHPCO (formerly the National Hospice and Palliative Care Organization), recalls a client who was overwhelmed after taking her husband home from the hospital to die. Rush talked to her about palliative care, a social worker, hospice, and getting a hospital bed. “She didn’t have the first clue about any of that. No one in the hospital tells you,” says Rush, who is also a past president of NEDA.

Likewise, Cynthia Schauffler of central Oregon contacted Peaceful Presence about a friend with terminal cancer. “My friend asked me when she should call hospice and I didn’t have the wherewithal, resources, and contacts to help her.”

Doulas from the group began visiting her friend twice a week. The visits included reiki, art therapy, and conversation with a chaplain. They got her hospice care and talked to her family about what to expect.

No Typical Cases

You may hear end-of-life doulas referred to as a soul midwife, end-of-life coach, death midwife, transition guide, or death doula. Unlike hospice, the cost of a doula is not covered by Medicare.

Private insurers do not reimburse for doulas, either. But some doulas provide volunteer services through a hospice or nonprofit organization.

Doulas may charge an hourly rate, from $45 to $100, or on a sliding scale. Or you may be quoted a flat fee from $500 to $5,000. Costs will vary depending on the number of visits, location, whether the doula is staying overnight, or other service requests.

Similar to a birth doula, an end-of-life doula tailors services to each client. Beyond getting wills and advance directives in order, they encourage the dying to reflect on their life. Are there relationships they want to repair? Something they need to say or do before they are gone? Who do they want to see again before they die?

There is no such thing as a typical case when you’re a doula. “It’s all over the board,” says Rush, a former hospice nurse and midwife, too. It’s not unlike the old tradition of a neighbor, friend, or auntie coming into help, she says.

Doula visits can be daily, weekly, or span several years. They can assist with writing letters, doing laundry, planning a funeral, or creating a legacy. A legacy project might involve captioning photos, scrapbooking, or organizing recipes to pass on to family.

One of Johnson’s patients had an extensive record collection. She helped him write meaningful stories about his life that coincided with each album. She hung up the stories in his room for visitors to read and discuss with him.

Someone to Talk to and Cry With

Sometimes, the family needs practical or emotional support more than the person who’s dying does — especially if that person isn’t conscious or alert.

Joanna Harmon of Finksburg, MD, described her doula as “a formidable advocate” who helped her weather the stress and emotional strain when her dad was dying in 2019. The doula was trained by Gilchrist, a hospice in Maryland that has offered volunteer doulas to their clients since 2010.

“She sat with my dad for as long as 3 hours and held his hand so I could leave the room.” The doula also helped get her mind off “the inevitable” by asking about her childhood with her dad. “She was someone to talk to, to cry to, to let those things off your chest,” Harmon says.

Schauffler says that her friend’s doula dropped everything to be there for her friend’s final hours and kept in touch with her husband afterward. “It made a huge difference,” she says.

Where to Find a Doula

To find an end-of-life doula, inquire at local hospices that may work with doula volunteers. Or start with the state-by-state directory of doulas from the National End-of-life Doula Alliance.

These end-of-life doula training programs can also link you to people who completed their course work:

  • International End of Life Doula Association
  • The International Doulagivers Institute
  • The University of Vermont Larner College of Medicine
  • Lifespan Doula Association

If You Choose a Doula

Ask prospective doulas about their training, experience, and fees, and also about their availability and backup, advises Rush, who also trains doulas as owner of The Dying Year. Plus, see if they offer the services you want. Massage therapy? Meditation? Meal prep?

You may opt to hire an end-of-life doula who has completed training courses and received certification. But there is no license or credential required to practice. “There is no universally recognized local, regional, or federal authority, regulatory or accrediting body that holds liability or provides monitoring for end-of-life-doulas,” states the website of National End-of-Life Doula Alliance. “There are a growing number of organizations offering certification but it is voluntary.”

Get references and also consider whether they have the experience but not formal credentials. “The person may have a lot of experience and no certification so don’t rule that out,” Rush says.

Complete Article HERE!

After Widowhood Comes a Second Act with Purpose

What I learned after my husband’s death helped me build a business to help others handle their own myriad of tasks

Ronnie Genser and Sandy Weinberg on the final cruise they took together before his unexpected death

By Ronnie Genser

My unexpected journey to my “second act” began on September 20, 2011, the second day of Rosh Hashanah (Jewish New Year 2011) when my beloved husband Sandy (Sanford) Weinberg, age 61, had an unexpected massive heart attack around 11 pm.

Sandy was a health care management professor at the graduate level and a worldwide FDA Regulatory Affairs consultant, who also lectured and trained pharmaceutical companies around the world on how to get their new drugs through the U.S. regulatory process. He had just returned a few hours earlier from a speaking engagement to European pharmaceutical executives at one of his client companies in Cork, Ireland.

A week later after two operations when his doctors told me there was no more they could do, they asked me what I wanted to do. Fortunately, I knew what Sandy would have wanted because ten years previously we not only completed our Advance Directives for Health Care in our home state of Georgia, but we also discussed our end-of-life values and wishes.

Doing What Needed to Be Done

Based on these discussions, I asked his doctors if I could have 36 hours for the immediate family to arrive, then say their goodbyes, and recite the Vidui (Jewish confessional) prayer at his bedside. I also told the medical personal attending him that afterwards it would be time to turn off the life support machines keeping him alive. He died on October 8, 2011 – Yom Kippur (the Jewish Day of Atonement), just as Neilah (the Yom Kippur closing prayer) was beginning in the Eastern time zone.

My long-time financial advisor and friend told me, if what had happened to me should ever happen to her, she’d have me on ‘speed dial.’

About three months after my husband’s death, while speaking with my long-time financial advisor and friend, she told me if what had happened to me should ever happen to her, she’d have me ‘on speed dial.’ This was because not only was her husband one of her employees, but also because I had shared with her many of the challenges and tasks I initially faced after my husband’s unexpected death. She also said she could not both run her business and do all the things that needed to be done.

I thanked her for the vote of confidence, but politely told her I did not have the time or personal bandwidth to start a new business. Not only was I attending to all the ‘after a death’ tasks (i.e., ‘the stuff’) I needed to do, but I was also running my 20-year-old business, Genser International Consulting, a sole proprietor international sales and marketing consulting company, focused on helping U.S. companies find export markets for their products, and overseas firms find new or additional U.S. markets.

Preparing to Start My New Business

Five months later, I had dinner with another long-time friend who had been in international finance for many years and had left that career to become a financial advisor. She immediately said I needed to speak to the Financial Planning Association of Georgia (FPA of GA) of which she was a member. Ten days after we spoke, she called to tell me I would be their monthly speaker in two months.

A man wearing a button up shirt and tie smiling. Next Avenue, bereavement, grief, widow
Sandy Weinberg

Great reviews after my speech led me to really think about starting a new business, which I did. However, it took me a couple of years to figure out what services I would offer, and more importantly how to verbalize them in a way potential clients could easily understand.

Because I didn’t know anyone who was doing what I wanted to do, there appeared to be a market opportunity for this type of service, especially as the boomers began to age.

I named my business “Bereavement Navigators”, not a great name for what I do, but after (1) my two friends and I spent a lot of time searching for words to name my business, (2) my FPA of Georgia speech date was looming on the horizon, and (3) I wanted to at least have business cards and a business license prior to my speech, even if I didn’t yet have clients, we settled on this name.

Complete Article HERE!

How should I talk to children about death?

Be brief but honest – and answer their questions

‘Young children in particular need reassurance that their life will go on no matter what happens.’

It’s important to give kids time to process information – and reassure them they’re safe and cared for

By

When Rechelle Leahy’s husband Allistair was diagnosed with stage-four colon cancer in 2013, they faced a difficult decision: when, and how, they would tell their two children – aged just six and four – about his impending death.

It’s a situation no one wants to find themselves in but, given the inevitability of death (and with one in 20 Australian children losing a parent before the age of 18), it’s a topic we ought to be prepared to tackle.

So how to do it?

According to the paediatric psychologist Deirdre Brandner, parents of young children can start this discussion with a focus on small creatures or plants, giving children the basic understanding that “living things die”.

“The death of pets, whether they are ours or others’, can be a helpful way to introduce this topic,” she says. “Talking about how we felt when a pet or someone we loved died will allow children to better understand the grief process.”

She says while children under five will struggle to understand that death is irreversible and universal, it’s still important that they’re told when someone they know has died, though parents might consider the amount of information shared.

“Keep explanations brief but honest,” she advises. “Young children tend to ask more direct questions and often ask the same questions over and over again because they are trying to process this event. Sometimes we want to avoid discussing death with children because we are worried or fearful about how they will cope, [but] talking to children about death will allow them to feel more secure and supported.”

Matthew Kwoka of Southern Cross Funerals, who runs a video series called Death Defined that aims to break the stigma around the “death conversation”, says children often gain an understanding of death when bearing witness to someone’s declining health during a terminal illness, but sudden or tragic deaths can be more traumatic.

“[The] immediate departure of a parent … is a totally different kind of grief,” he explains. “The shock factor is more traumatic for all involved and is a far more difficult situation to explain to a child.”

In such cases, Brandner suggests planning your talk first (running it by a friend can be helpful), speaking openly in language children will understand, using words like died or dead over “went to sleep” or “passed away”, which create confusion and do not help the grieving process.

“Tell children the truth and do so as soon as you can,” she advises. “Be calm and set the emotional tone. Carefully watch for your child’s reaction and follow their lead. Reassure them that they are safe and cared for. Don’t overwhelm them with too much information at the beginning but be there to answer questions in the coming days.”

While their responses will depend on their age and developmental stage, Brandner says it’s important to give children time to process the information, to validate their feelings, and to remember that there’s also “much variability in how any of us grieve”.

She suggests rituals, experiences and routines as a way to help the process. This could include creating memory books or slideshows to remember the person, along with planting their favourite flower or making their favourite meal, or lighting a candle. She also suggests sticking to children’s regular routine where possible, to bring a sense of normalcy to their days.

“Young children in particular need reassurance that their life will go on no matter what happens,” she says. “Some children will not display any adverse reactions, but others may exhibit increases in irritability, anxiety, clinginess or anger outbursts.

“There can be changes in appetite, losing themselves in screens or retreating to their rooms. We do need to provide comfort and flexibility in supporting children during this time. However, children respond and are best supported by routine and consistency. It makes them feel secure that their world is still the same.”

Leahy says her boys were understandably sad after their father’s death. They’d ask questions about whether Allistair could see them, if he was missing them and what he would do now that he wasn’t there in person any more. As a family they’ve been open about their feelings since Allistair’s death: celebrating his birthday with cake and his favourite movies, and releasing balloons on the anniversary of his death with notes attached, telling him what they have been up to.

“The conversation [about his death] was the hardest we had as a family,” Leahy says. “It was devastating to know that the loss of the boys’ dad would leave such a big gap in their lives, but it was also a way to show the boys that it was OK to have complicated emotions, to show them that adults get sad too.”

After losing her mother, grandmother and husband in 10 years, Leahy launched iDecide, a platform with “bank-level” security that allows users to plan and store crucial information for loved ones in case of their death. She says being open and honest helped alleviate her children’s anxiety at an incredibly tough time.

“We need to include our families in this conversation,” she says. “It empowered Allistair to manage the narrative around his own death and [helped] the boys understand that when he died it was not him abandoning them, but that death is part of the lifecycle and he would still be with them every day because he is part of them.”

Complete Article HERE!