Whose Job Is It to Talk to Patients About Death?

In the U.S. health-care system, it’s often unclear who should talk to patients about end-of-life care options. Medicare’s new reimbursement scheme may incentivize doctors to take ownership of those difficult conversations.

talking to a patient about death

By Ricardo Nuila

When Pedro Faust Tzul Menchu, a 45-year-old man with colon cancer, told his oncologist he couldn’t move his leg, a medical alarm bell went off. He’d received chemotherapy a week before, so his other symptoms of vomiting and jaundice weren’t entirely surprising. But the lack of movement in his legs could have been a sign of a spinal-cord compression—when an infection or tumor strangles the nerves running up and down the spine—and potential cord compressions are always treated as an emergency. Pedro was sent straight from the oncology clinic to the hospital, where he was assigned to me as a patient. As Pedro’s hospitalist, the doctor in charge of orchestrating his care, my main job was to figure out if his spinal cord was at risk.

An MRI showed that the cancer had spread to Pedro’s tailbone and throughout his abdomen, but hadn’t damaged his spinal cord. All the specialists I consulted—neurosurgeons, interventional radiologists, more oncologists—recommended a small procedure to protect the collapsed vertebrae so that a future spinal-cord compression might be avoided. When the weekend was over, I handed off Pedro’s care to a partner of mine, another hospitalist, since we typically rotate on Mondays. “They’ll perform the procedure this coming week,” I explained before leaving. Pedro sat up in bed, shook my hand, and thanked me.

Only later did I realize that I never told Pedro how close he now was to dying. His cancer had spread despite two lines of chemotherapy, a previous “debulking” surgery to remove as much of the tumor as possible, and constant surveillance with CT scans. It had nearly claimed the use of his legs. Most likely, it would claim his life within the next six months.

During our first meeting in the hospital’s cancer ward, Pedro confided to me how happy he was to have a doctor who spoke to him in his native Spanish. “It feels so good to be understood,” he said. “Hopefully, with God’s help, you’ll find a way to help me.” We didn’t only talk about his spinal cord. Every time I checked on him, we chatted about his old life in Guatemala.

A couple of times, Pedro arranged it so that his family visited while I made rounds, so I could talk to them all together about the steps that lay ahead. “I’m sorry, but it looks like the cancer has grown,” I told them. I mentioned the upcoming procedures, the possibility of radiation therapy, how the oncologist was considering a third line of chemotherapy, but I admit I never fully connected the dots for them. Telling him what this all meant, how it was almost certain that he would die sooner than he thought, proved too difficult. Like any good doctor, I know how to keep patients focused on the positives—“your family’s all here,” or “it’s good to see you sitting up”—while respecting reality. But something about Pedro, with his calm smile and earnest pleas for my help, made it more difficult than usual to summon up the courage to deliver bad news.

Pedro’s daughter almost seemed to sense my trepidation. She couldn’t have been more than 8 years old, but that didn’t keep her from staring at me with doctor-suspicious eyes, as if I might be the boss of her father’s fate. Whenever she did this, I smiled at her and turned my attention toward Pedro. “Is there anything else I can help you with?”

A couple of days later, I traveled to Chicago to participate in a panel discussion that gathered palliative-care specialists from around the country with patient advocates, ethicists, social workers, and internists (like me), as well as representatives from organizations such as the American Association of Critical-Care Nurses and the Society of Hospital Medicine. The central question: How can we improve end-of-life care in the hospital? While everyone brought a different perspective, what bound us together, caregivers and the bereaved alike, was how much the experience of a hospital death had impacted us—how impersonal it had become, how mechanized, how inhumane. One of the panelists described losing her 36-year-old husband to metastatic colon cancer. Even though she saw a multitude of doctors every day, when her young husband found himself struggling to breathe near the end, none of them dared to discuss the inevitable. “No one told us anything,” she said.

That’s when I thought back to Pedro. By not telling him clearly what the progression of his cancer meant, had I inched him toward a hospitalized death, one that involved shocking his heart if it stopped and pureed food and waking him up every four hours for vital signs? The reason I had been invited to the panel in the first place was an essay I wrote about the difficulty of giving end-of-life care to undocumented patients. I described one patient in particular, a Guatemalan man who did not want to spend his last weeks cycling through the emergency room for pain medications. With the help of the consulate, my colleagues and I arranged to fulfill his dying wish to return to his home country. But the interest and care I’d shown this one patient meant nothing for the next. In not fully explaining Pedro’s prognosis to him, I simply hadn’t done my job.

Or was it my job? Last month, Medicare announced that it would begin to reimburse health-care providers for discussions on end-of-life options, sparking a new debate about who, exactly, should be having those discussions. Whose responsibility is it to clarify how many times a patient wants to be shocked if her heart stops? The critical-care doctor? Who should give the patient a well-informed and plain-spoken prognosis? The oncologist? One of the words that kept coming up in the meeting in Chicago was ownership. In the American medical system, with all its experts, shift work, and moving parts, it can be difficult to place ultimate responsibility for a patient’s care on one individual. That is to say, responsibility is shared—which is how certain duties, like talking with a patient about how close he is to death, can fall through the cracks.

But I can’t help but think that it was I and I alone who failed Pedro. I wasn’t his oncologist, I wasn’t the interventional radiologist, but of all his doctors, I was the one who could best communicate with him. I spoke his language. As it stands right now, there’s no way to guarantee that patients like Pedro receive counseling about different care options (maybe he doesn’t want to go through another round of chemotherapy) or help explaining their end-of-life decisions to family members (maybe he doesn’t want to spend his final days in an ICU).

Under the new Medicare proposal, scheduled to go into effect this fall, any qualified team member—a doctor, a nurse, an assistant—can bill for the time it takes to discuss all the different procedures and interventions that a patient like Pedro might face. Had this been an option during Pedro’s hospitalization, somebody else caring for him might have caught my oversight and talked with me about it, or perhaps held a conversation with Pedro herself and billed for it. Medicare’s reimbursement scheme doesn’t just incentivize holding difficult discussions, it also assigns responsibility. It’s a way of establishing ownership over a difficult conversation.

The day after the Chicago meeting ended—the same day Medicare announced its new plan—I tried finding Pedro in the hospital. I wasn’t scheduled to work, but I thought I might make up for my lack of clear communication by telling him what the new findings really meant. Unfortunately, Pedro was gone. I saw in the chart that the spinal procedure had gone smoothly and that he had actually walked out of the hospital.

A month later, I saw his name outside one of the doors in the cancer unit. Since our last visit, he’d lost weight and endured awfulness, his femur snapping spontaneously as he attempted to walk one morning, so overrun was it by tumor, but somehow Pedro retained his smile and grace. I told him I’d thought so much about our conversations that I wrote an article about him, one I hoped would help doctors think about how they communicate bad news, and he gave me permission to use his name. Fortunately, another of the hospitalists had taken the time to hold the difficult conversation with him. Pedro and his family knew he would soon die, and were preparing for such.

Still, I couldn’t help but feel a professional shame, one I used to feel as a younger doctor when nurses called to remind me of some routine task I had forgotten about, one that made me occasionally punch myself in the thigh and say, “I really need to remember to do that next time.” For Pedro’s sake, I really do.

Complete Article HERE!

Maplewood death shows critical need for end-of-life directive

Paramedics and nursing home workers across Minnesota can relate to the difficult decision that was made.

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Gloria Scott, right, signs a “do not resuscitate” order while at the hospice wing of Margaret Tietz Nursing and Rehabilitation Center in the Queens borough of New York on Nov. 26, 2009. At left is her physician, Dr. Lauren Shaiova.

A life-or-death decision by Maplewood paramedics, who stopped life support for an elderly woman at her husband’s insistence, underscores why individuals should have legal documents spelling out the care they want in what can be frantic and confusing end-of-life emergencies, health officials said Wednesday.

Paramedics and nursing home workers across Minnesota can relate to the difficult decision that was made Aug. 7, when medics initially revived 71-year-old Linda Sandhei and started wheeling her to an ambulance, only to have the woman’s husband tell them to stop, according to a police report of the incident. Sandhei died soon after.

Advance directives and do-not-resuscitate (DNR) orders can provide clear guidance for such high-stress decisions. But absent those documents, medics are often asked to trust relatives who are distraught and may not know the wishes of their dying loved ones, said Dr. Jeffrey Ho, medical director for Hennepin County Medical Center’s emergency management services (EMS).

“What we’re trying to avoid is some random person coming up to us and saying, ‘Stop, I don’t want Mabel resuscitated!’ And we ask, ‘Well, who are you?’ and he says, ‘Oh, I’m her son,’ ” Ho said. “We have no way of verifying if that’s true or not, and we really have no way of verifying whether Mabel would actually want to be resuscitated or not.”

Research has shown that patients’ wishes are followed more often when spelled out in advance directives, and that relatives suffer less stress and anxiety. But such documents remain uncommon, even after a coordinated campaign called Honoring Choices by Minnesota’s eight major health care systems to get more people to complete them. The state’s top system had completed directives from just 32 percent of its elderly outpatients, according to a study last year.

Sandhei, who had suffered from Parkinson’s disease for two decades, either hadn’t completed a directive or didn’t have one filed with the Good Samaritan nursing home in Maplewood. She was transferred there in July after being admitted to Regions Hospital, according to a police report.

Her son was at her bedside around 4 p.m. Aug. 7 when she vomited in her sleep and stopped breathing. Sandhei’s husband, Tom, arrived later and stopped the medics from loading his wife in an ambulance for transfer to a hospital. He declined to discuss the incident when reached by phone Wednesday.

Written directives aren’t always the final word in a high-stress situation when someone is dying and relatives are angry or scared. Paramedic Mike Trullinger has tried to follow DNR orders for dying patients only to be threatened by distraught relatives with lawsuits, a baseball bat and, in one rural case, a shotgun pointed at him.

“The patient had a DNR order, but the family member had a shotgun. So we performed CPR anyway,” said Trullinger, now a supervisor for HCMC’s EMS. A sheriff’s deputy eventually arrived and the man put down the weapon and became apologetic, Trullinger said. CPR failed.

Ho said his medics, too, have experienced tough situations even when patients had written documents. Sometimes the document might be improperly dated or lack a doctor’s signature, calling it into question. Other times relatives are scrambling to dig up the document from files while medics are proceeding with CPR.

Frequently, relatives who thought they were prepared to see a loved one die have a change of heart when the moment arrives.

Regardless, Ho said having that paperwork completed resolves more confusion than it creates and leaves people feeling confident in their end-of-life decisions.

“It’s a very difficult decision to be making in a split second with limited information,” he said. “It’s tough to be second-guessed afterward.”

Err on the side of life

The Maplewood Fire Department policy manual instructs medics to follow written orders but otherwise pursue resuscitation: “Until properly completed orders are presented, pre-hospital personnel will assume that no valid DNR orders exist and proceed with standing orders for resuscitation as medically indicated.”

A Hennepin County protocol governing HCMC, North Memorial, Allina, Ridgeview and Edina EMS agencies provides similar advice.

“If we are going to start a resuscitation, we need to do it right then and there,” Ho said. “If the information is not clear to us, then we are erring on the side of starting resuscitation, because we can always stop it later.”

Nursing home workers operate under similar assumptions, said Patti Cullen of Care Providers of Minnesota, a trade group for nursing homes. “From a legal perspective, we advise our members that without the presence of this DNR that is signed, that’s official, they’ve got to do every lifesaving measure, because families will sue if you don’t save a life. They won’t sue if you break ribs because you did CPR.”

The fact that the Maplewood medics halted life support in the absence of a written directive for Sandhei suggested to Ho and Cullen that they had enough information from the relatives or nursing home staff to override the bias toward continuing lifesaving efforts.

Maplewood police made no arrests in the case after an investigation concluded that the medics acted in “good faith.” The term is defined in the state’s advance-directive statute as acting in the best interests of a patient in any way short of assisted suicide.

Six Maplewood firefighters, including the chief, were suspended after a complaint was filed, but city officials declined to confirm whether the complaint was linked to Sandhei.

Cullen sympathized with the relatives and first responders, who she said appeared to act in the best interests of the family and patient.

“You know, the reason for doing that legal document,” she said, “is to get all of the family members on the same page.”

Complete Article HERE!

When I die

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In this intimate portrait, Philip Gould wrestles with the meaning, and unexpected ecstasy, of impending death

 

 

 

Philip Gould was diagnosed with cancer of the oesophagus in 2008, and in the summer of 2011 he was given three months to live. Filmed during the last two weeks of his life, this intimate portrait reveals Gould’s quest to find meaning in what he called ‘the death zone’.

Gould believed that for the terminally ill and those close to them, there can be moments of joy, resolution and inspiration just as intense as those of fear, discomfort and sadness.

‘I am not redefining death, I am offering another way to perceive dying. I have been offered an opportunity to live every moment until there are no more moments for me to live and for that I will be eternally grateful.’

Pokin Around: Dr. Bob Saylor looks at death through eyes of a patient

By Steve Pokin

Dr. Bob Saylor sits slumped in a wheelchair waiting for me outside Mercy’s Cancer Center.

His wife of 46 years, Marcie, stands behind the chair. She seems to be slumping, too, as if punched in the gut.

Dr. Bob Saylor
Retired doctor Robert Saylor poses for a portrait at the Mercy Cancer Center. He headed the hospital’s ethics program. He now has brain cancer and faces questions of his own life and death.

Bob, 64, has brain cancer. He is dying.

The plan was to interview him for about 90 minutes as he received chemotherapy. But he and Marcie have just been told his white-blood-cell count is too low. His fragile body can not handle the rigors of chemotherapy.

I ask if we can still do the interview. His voice is a whisper — sure. I wheel him into the small chapel in the cancer center.

I want to establish a starting point for our conversation. I don’t want to presume. So I ask him: Do you believe you are at the end of your life?

“Yes, I do. Do I see myself dying tonight? No. Would I be surprised if I did? No, I would not be.”

Bob is a nephrologist — a kidney specialist. But about10 years ago he went back to school for a master’s degree in bioethics. For the past several years he has been the director of ethics for Mercy in Springfield.

During this time he has worked with doctors, nurses, patients and their families. He has explored the big questions of life and death and tried to determine — case by case — when medical intervention should cease, when you simply let things be.

“Just because we can intervene as doctors does not always mean we should,” he says.

Now, as cancer takes hold of him, he is the patient. He is the one who must choose how to live his remaining days.

The deadliest cancer

In November, he was betrayed by his left hand. It stopped working. He thought it was carpal tunnel syndrome.

It wasn’t. It was a glioblastoma multiforme brain tumor the size of a small fist. Sadly, the fist has opened and spread its malignant fingers.

Weeks later, he was in Houston being prepped for brain surgery at the University of Texas M.D. Anderson Cancer Center.

The nurse practitioner looked at him and said: “If I were you, I would go home and get my affairs in order.”

In the chapel, he tells me, “That’s not how we do things at Mercy.”

The surgeon removed 92 to 95 percent of the tumor, which is good, Saylor says. He would undergo chemo and radiation to try to get the rest.

Once back in Springfield, Saylor added a new, different treatment — a supplement to the chemo and radiation.

It was a non-invasive procedure called Optune. Electrodes were placed on his scalp. They sent wave-like electrical fields into his brain to prevent the cancer cells from multiplying.

The initial results offered hope. Mercy issued a press release. The News-Leader ran a story — “Mercy doc tries new tumor-zapping treatment for brain cancer.”

Then the tumor came back.

“We can’t say it failed,” Bob says. “It is not doing what we thought it was going to do.”

“Well, I guess you’d say …

What can make me feel this way? My girl. Talkin’ ’bout my girl.”

Bob Saylor and Marcelene McMartin were 14 when they met at East High School in Sioux City, Iowa. They married at 18.

The song of their life together is “My Girl,” by the Temptations. Their boat, docked at Table Rock Lake, is “My Girl II.”

He plays that song every time they leave the dock.

“She has been my pillar of faith,” Bob says of his wife. “She has been my caregiver. She is my wife. She has kind of been my everything.”

Although he is ready to die, he clings to this good life of rewarding work, three brothers, four children and seven grandchildren.

“I still feel I have so much to teach people,” he says. “I have physicians coming down the hallway to discuss cases, to talk about things.”

He blames no one and no thing for his cancer.

“I never said to myself, ‘Why me? Why is this happening to me?’ I guess I have never been that way. What is going to happen is going to happen.”

He has a medical directive that gives Marcie oversight of his care. He will not tell me what it says. He does not want to unduly influence anyone else’s decision of what they should do. That decision is personal. It is based on the narrative of one’s own life.

But he does offer this: “I am far more concerned about quality of life than quantity of life.”

SOGI task force

I first met Bob at Brentwood Christian Church, where we attend. He sought me out to discuss our coverage of the community debate on the Sexual Orientation and Gender Identity ordinance.

This was before the ordinance was repealed in April. Bob was on the SOGI task force. He supported the law.

“Our job as a community and as a government is not to legislate morals,” he tells me. “It is to protect people from harm.”

The issue of protecting people based on their sexual orientation was important to him in large part because years ago he treated AIDS patients while in the Army at Fort Sam Houston.

Later, he was one of the few physicians who treated AIDS patients in the 1980s in Sioux City. And he treated them in Springfield, at Mercy, as well.

Bob served on the task force with others, including Dick Hardy, a former president of the Assemblies of God Central Bible College, which has since ceased operation. Their views on social issues — including SOGI — are as different as the music of Black Sabbath and, let’s say, the Temptations.

The two men discovered they both attended East High School in Sioux City. They did not know each other in high school. Hardy is 61.

They met for lunch. Hardy showed up in his high school letter sweater.

“We talked about life and friendships,” Hardy says.

They understood each other better; they respected each other; but continued to disagree.

“A friendship and a relationship are far more important than any task force that comes and goes,” Hardy says. “A friendship is from start to finish.”

Hardy calls Bob regularly.

“He will just start out in prayer,” Bob says. “They are beautiful prayers. He is a wonderful man. Yes, we have completely different social ideas. But he cares not about that. He cares about me as a person.”

The hopes of others

If anything, Bob is a pragmatist. As such, when he was first diagnosed he was unsure how to respond to those who said they prayed for him.

“I’m not sure if their prayers are going to matter in terms of whether I live or die — but it helps them,” he says. “My oldest son, Rob, has told me that when people pray for me it means they care about me. And if I ask people not to pray for me I take away their hope. I leave them only with despair. And I don’t want to do that.”

I ask Bob if he believes in an after-life.

“Do I want to? Yeah, I want to. Everybody wants to. I guess I do. I suppose I do. … I am not sure what life is before we are born or after we die. I guess that is as existential as you can get.”

I ask if he is in pain. He is not.

What is your greatest concern?

“Losing my cognitive ability is my greatest fear of all,” he says.

“Your business is your mind. If I can’t do what I want to do or am trained to do, it would be very difficult for me. Very, very difficult.”

He has, thus far, kept his sharp mind and occasionally sharp tongue.

“Some people think that during my brain surgery they should have taken out a little more of my sarcasm,” he says.

Bob can no longer walk on his own. His left hand still does not function. Yet he writes extensively on the website Caring Bridge about the loves of his life: his wife, his brothers, his parents, his co-workers, his in-laws, his pastors.

He will not pen good-bye letters to his four children. He doesn’t want to tip the scale of memory to his final days.

He and his father, who is deceased, shared a love of poet Robert Frost, and in particular the poem “Stopping by Woods on a Snowy Evening.” It is a poem about the inevitability of death.

A few months ago, Bob dreamt of his father reciting this poem to him in his baritone voice. Bob believes the dream has meaning — that his life will continue to have value until it ends. The closing stanza is:

“The woods are lovely, dark, and deep.

“But I have promises to keep.

“And miles to go before I sleep.

“And miles to go before I sleep.”

Complete Article HERE!

What’s a Death Midwife? Inside the Alternative Death Care Movement

From funeral cooperatives to green burials, there’s a kinder, gentler, less expensive way to die.

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YES! illustration by Jennifer Luxton.

By 

Char Barrett walked into a quaint cafe in Seattle with business in mind.

Over the smell of coffee and freshly baked tarts, she was going to advise a client on how best to host a special event at her home, helping coordinate everything from the logistics of the ceremony, to how to dress the guest of honor. People might cry, they might laugh, and all attention would be on the person of the hour—only that person would never see, hear, or enjoy the festivities, because they would be dead.

001“People looked at me like I had two heads when I said, ‘Keep the body at home after the person dies,’” says Barrett, a Seattle-based funeral director and certified “death midwife.” “For families who want it, they should have the right to do it.”

Barrett has been practicing home funerals in the area since 2006 through her business, A Sacred Moment. In a home funeral service, the body is either brought back to the family from the place of death or stays at home if the person died there. The family then washes the body, in part to prepare it for viewing and in part as a ritual.

“It’s really the way we used to do it,” says Barrett.

To Barrett and many other professionals who are offering alternatives to the more status-oriented, profit-driven funeral industry, it’s time to rethink how we handle death. From consumer cooperatives that combat price gouging, to putting the power of choice back in the hands of the family, the city of Seattle has become a hub for alternative death care in the last two years, according to Barrett. The subculture of “deathxperts” want not only to empower their clients, but also potentially phase out their jobs altogether—a sort of death of the funeral director as we know it.

A History of Death

For the majority of human history, families handled arrangements for the deceased, from the time immediately after death, to burial or cremation. Until the advent of modern hospitals and health care at the turn of the last century, it was the norm for the old and sick to die at home surrounded by loved ones.

During the Civil War, embalming as a form of preservation found a foothold when Union soldier casualties needed to be transported from the sweltering South to mourning families in the North. Today, its pragmatic purpose is to temporarily stop decomposition for viewing and final goodbyes. However, the overwhelming majority of contemporary consumers don’t realize that, in most cases, it’s not legally required to bury a body, although special circumstances vary from state to state.

So why has probably every American funeral you’ve been to had an embalmed body in attendance?

As 20th century consumerism took hold and people were more likely to die in a hospital than at home, death receded from public consciousness. If a loved one were to die today, you would probably call and pay a funeral home to pick her up from wherever she took her last breath. They would wash her, embalm her, and dress her to your family’s liking. You would briefly visit her one last time at a mortuary or a chapel before she was either buried or burned. In all likelihood, her last bodily contact before disposition would be with a complete stranger.

In 1963, investigative journalist Jessica Mitford published “The American Way of Death,” an exposé of the country’s funeral-industrial complex, showing how it exploited the emotions of the living so it could up-sell unnecessary services and products, such as premium caskets and premier vaults. Federal Trade Commission regulations and consumer protections now prevent families from being swindled.

002Today, the funeral industry has become managed in part by aggregate companies. Mortuary giant Service Corporation International owns a large network of individually operated funeral homes and cemeteries, some of which exist on the same property as combination locations. If you imagine a standard funeral parlor and graveyard, you’re probably picturing an SCI-owned operation. Of the approximately 19,400 funeral homes in America, the publicly traded company owns about 2,300 homes, according to the National Funeral Director’s Association. Families and individuals privately own most of the rest.

“The reality is that if you can’t adapt to compete with SCI, you probably shouldn’t be in the market,” says Jeff Jorgenson, owner of Elemental Cremation and Burial, which prides itself in being Seattle’s “only green funeral home.” “But SCI is one of the best competitors you could ever hope for because they’re slow to change and they’re exceptionally resistant to anything progressive.”

Jorgenson started his business in 2012 with a special focus on carbon-neutral cremations and “green” embalming using eco-friendly preservatives. In every aspect of his operation, he works to be as environmentally minded as possible, an objective he sees lacking in most business models.

As SCI spent the 1960s through 1990s acquiring independent funeral homes to maximize profits, another organization was doing the exact opposite by forming a collective to prioritize consumer rights.

People’s Memorial Association is one of the nation’s only nonprofit organizations that pushes consumer freedom for end-of-life arrangements. Located in Seattle, the consumer membership-based group coordinates with 19 different death care providers across the state to offer fixed-price burial, cremation, and memorial services, as well as education and advocacy to encourage death care alternatives. Almost all of the funeral homes are privately owned and have a uniform price structure for PMA members, who contribute a one-time fee of $35. Barrett’s A Sacred Moment is one of PMA’s partners.

003“We negotiate contracts with the funeral homes so members walk in knowing exactly what they’re going to pay, and it’s usually a pretty significant discount from the usual prices,” says Nora Menkin, the managing funeral director of the Co-op Funeral Home. PMA founded it in 2007 when SCI decided to cancel arrangements with several of PMA’s partners. Now, PMA-contract homes offer full-service funerals for 65 percent less than the average local price, according to a 2014 price survey conducted by the PMA Education Fund.

“There’s no sales pressure, there’s no up-selling, and we make sure people get what they need,” says Menkin. “It’s about the consumer telling us what they want.”

Jorgenson’s Elemental Cremation and Burial works outside the umbrella of PMA’s service providers, but he still finds allies in Menkin and the Co-op Funeral Home.

“We’re in it to change an industry,” he says. “Just one of our voices out there is useless. There’s a kinder, gentler, less expensive way, and that’s what we’re all doing. It’s helping families in a new, more collaborative way.”

In Jorgenson’s opinion, you don’t even really need a funeral director.

“A funeral director is a wedding planner on a compressed time scale,” he says. “With the exception of the legality of filing a death certificate, a funeral director does the exact same things a wedding planner does: They make sure that the venue is available, that the flowers are ordered, the chaplain is there for the service, and that the guest of honor, be it the bride or the dead person, is there on time.”

In Washington state, some of the only legal requirements are preservation of the body 24 hours after death by way of embalming or refrigeration, obtaining a signed death certificate, and securing a permit for disposition of the deceased.

If the body will be kept at home for longer than 24 hours, preservation can be achieved by putting the body on dry ice for the duration of the viewing. Once the family has had enough time with the person, he or she will be removed for final disposition, which includes burial, cremation, or scientific donation.

“A funeral director that is truly in earnest with the services they’re providing these families would have the courage to say that,” says Barrett. “A family can do this themselves. They don’t need a licensed funeral director, especially in the 41 states where legally a family is able to sign their own death certificate.”

Even families who still want the guidance of a professional shouldn’t feel powerless.

“Too many people go to funeral homes and just want to be told what to do, because they haven’t been through it or they don’t want to think about it. That gives the funeral homes way more power than they really deserve,” says Menkin.

Ideally, a funeral home should educate consumers and encourage them to make informed decisions, she says, ultimately just acting as an agent to carry out their wishes.

The Process

For almost every modern funeral home preparation procedure, there is a more sustainable alternative. Dry ice can offset the need for embalming for brief viewing or shipping purposes. In instances where some form of embalming is necessary, such as a violently traumatic death, a mix of essential oils can replace the toxic mix of tinted formaldehyde. Even in the case of burial, biodegradable shrouds can eliminate the need for wood and metal caskets built, in theory, to last forever.

The distinctions apply to cemeteries too, which are divided into several camps as outlined by the Green Burial Council, the industry authority on sustainability. It assigns funeral homes, cemeteries, and suppliers a rating based on strict environmental impact standards, which scrutinize everything from embalming practices to casket material.

004There are traditional cemeteries with standard graves, monuments, mausoleums, and often water-intensive grass landscaping. The next step up are hybrid cemeteries, which still may have regular plots, but also offer burial options that don’t require concrete vaults, embalming, or standard caskets. Natural burial grounds, the middle rank, prohibit the use of vaults, traditional embalming techniques, and burial containers that aren’t made from natural or plant-derived materials; landscaping must incorporate native plants to harmonize with the local ecosystem, conserve energy, and minimize waste. Premier green burial occurs on conservation burial grounds, which in addition to meeting all of the above requirements, requires partnership with an established conservation organization and be dedicated to long-term environmental stewardship.

Natural and conservation burial grounds must limit the use and visibility of memorials and headstones so as to preserve the native visual landscape as much as possible. Some properties have switched to GPS-based plot markers—visitors wouldn’t know they’re in the middle of a cemetery unless they were looking for it.

As consumers become more comfortable with taking charge of their dead, there will be more room to introduce new methods of body disposition, such as alkaline hydrolodis, a type of liquid cremation, and body composting. Earlier this year, supporters successfully funded a Kickstarter campaign to start research on the Urban Death Project, which aims to turn decomposing bodies into nutrient-rich soil. According to Jorgenson, sustainable burial practices are still part of a boutique market, though that doesn’t change his bottom line.

“Death is difficult. People don’t really want to experiment with mom,” he says. “But I count myself fortunate to be out there as one of the people that offers these alternatives, should someone want them.”

“The co-op movement is bigger in other countries,” says Menkin, who attended the 2014 International Summit of Funeral Cooperatives in Quebec. “Canada has a large network of funeral cooperatives, but it’s a bit more like a traditional funeral industry, just with a different business model. They’re not about alternative forms of disposition or changing the norm. We’re kind of writing the book on this one.”

Eventually, those conversations may become commonplace.

“Now when I mention home funerals to people, they don’t think anything of it,” says Barrett. To her, the time has come for people to think outside the box—literally.

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Zen and the Art of Dying Well

The Amateurs Guide Cover

Right-to-die advocate dies without reprieve: San Mateo resident Jennifer Glass fought for new legislation

By Samantha Weigel

Just months after urging the California Legislature to empower her to cease her suffering on her own terms as she battled an aggressive form of cancer, Jennifer Glass died in her San Mateo home Tuesday night.

jennifer-glass
Jennifer Glass died in her San Mateo home Tuesday night after battling stage 4 lung cancer. Glass had sought changes to state legislation so she could have controlled how she died.

Despite her condition, the 52-year-old was an active advocate for Senate Bill 128: End of Life Option Act and her supporters remain saddened the legislation, which could have allowed Glass to avoid more suffering, stagnated in the Assembly.

A former communications specialist who took charge of high-power campaigns such as for Facebook and Oracle, Glass turned her attention to the state’s right-to-die initiative after being diagnosed with stage 4 lung cancer in 2012, just four months after marrying her husband Harlan Seymour.

A national spokeswoman for the movement who worked closely with the advocacy group Compassion and Choices, Glass died while California lawmakers stalled on a right-to-die law. SB 128 would give patients who are terminally ill the right to terminate their own life after completing a series of checks and balances with doctors and mental health professionals.

Glass fought to extend her life through chemotherapy as well as radiation and even did better for a time; however, a CT scan taken in June of this year showed her cancer had spread to her lungs, liver, abdomen, pelvis and brain. Unable to tolerate chemo, she decided to die at home, Seymour said.

As her lungs filled with fluid making breathing difficult and her pain increased, Glass opted to undergo palliative sedation — a process in which she is medicated into a coma then nutrition and fluids are withheld until the patient dies from the disease or dehydration.

It took her more than five days to die, a disheartening time marked by her awaking from the coma in a panic one evening, Seymour said.

“By the time she started palliative sedation, she was in so much pain, she really couldn’t say goodbye to people. If there was an end-of-life option, she could have started earlier, even just one day, she could have said goodbye to her loved ones and had a quiet death,” Seymour said. “Palliative sedation is really just a slow motion version of what the end-of-life option offers. Instead of a seven-day, dragged-out death in a coma, it’s a death that could just last a few hours and allows for a better ending with one’s family. … It would have been a great comfort to her if she had the choice to end her life in a faster manner. She would have suffered less.”

Had SB 128 been enacted, Glass would have been able to obtain aid in dying through prescription medication that she could have taken at home allowing her to die in her sleep, sometimes in as little as 30 minutes — as in the case of Brittany Maynard, a 29-year-old Bay Area resident who moved to Oregon to exercise her right to die, according to a press release from Compassion and Choices.

Opposition

Opponents say SB 128 could have unintended consequences as insurance companies looking to cut costs or those without good access to health care may be more inclined to use these types of laws.

“The concerns of our coalition, there are many but primarily, is that you cannot base broad public policy decisions on one case, you have to look at all of California and not just a single individual or a narrow group of individuals,” said Tim Rosales, spokesman with the Californians Against Assisted Suicide. “Consider how these policies would impact everyone in a state as diverse as California; particularly in parts of California where people do not have access to the types of health care where they can get second and third opinions or access to better treatment.”

Rosales noted many states across the country turned down legislation dealing with the issue this year and instead, California should focus on making hospice and palliative sedation more accessible.

Another option

While opponents often cite palliative sedation as a suitable alternative, representatives from Compassion and Choices argue Glass’ case proves it didn’t allow her to die peacefully.

“With Jennifer, it obviously did not work as effectively. … It’s really important for people to understand that in reality, palliative sedation does not work for everyone and those folks need another option. Medical aid in dying is that option,” said Toni Broaddus, campaign director for Compassion and Choices California. “In that sense, this legislation is really somewhat neutral because it doesn’t tell anyone what they have to do at the end of their life, but it says you can have all the medically possible options out there at the end of life. Public policy, and this is good public policy, I think is for the state not to be telling people they can’t have access to a service or prescription that many other states are using.”

Glass’ family agreed adding palliative sedation is not as dignified and can be much more painful for both the patient and their loved ones. Glass’ sister Mavis Prall noted it was not the quick nor peaceful option she was fighting for.

“She did not want her loved ones to have to watch the life drain from her over a five-day period, nor to watch her lose all dignity as her body slowly shut down,” Prall said in the press release. “Members of the California Legislature should be aware that their inaction has painful consequences. I urge them to pass the End of Life Option Act this year.”

Glass publicly spoke in support of SB 128, co-authored by state Sen. Bill Monning, D-Carmel, as she fought to provide those who are suffering with a choice.

‘Keep fighting’

Glass had been scheduled to testify in the Assembly’s Committee on Health July 7 but the hearing was canceled and has yet to be rescheduled. Broaddus acknowledged while SB 128 easily passed the Senate, there weren’t enough votes in the Assembly. Yet as Glass requested, they will continue to advocate for the bill to be adopted this year, Broaddus said.

“Her message to us had been ‘keep fighting, don’t stop fighting,’” Broaddus said. “This issue is very very personal for people. Despite what it may appear, it does not break down party lines or ideological lines. It’s something people look at very personally based on their own experience.”

Sen. Monning expressed his condolences while noting SB 128 is still in action.

“My heart goes out to her family. We will continue to pursue Jennifer’s commitment to establish the right of terminally ill patients to have all end-of-life options made available to them,” Monning wrote in a press release.

Legacy

Seymour said he would continue to support the right-to-die movement that could have spared his wife from further suffering and prefers she be remembered as a strong, loving and logical woman.

“Jennifer was very worried about suffering greatly in the process of her death, and she was concerned about what it would do to her loved ones. She didn’t want to die drowning in her own lung fluid and that’s essentially how she died,” Seymour said. “If you allow palliative sedation, there’s no reason not to allow a faster, less traumatic, less painful way of going as well. … I really want to see Jennifer’s legacy and her dream of having an end-of-life option come true.”
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