I Know You Love Me — Now Let Me Die

A physician laments the often-excessive care of older adults at the end of life

By Louis M. Profeta, M.D.

In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would, in days gone past, watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went.

These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away.

She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness?”

You see, that’s how she used to die. We saw our elderly different then.

Still the Same Person

We could still look at her face and deep into her eyes and see the shadows of a soft, clean, vibrantly innocent child playing on a porch somewhere in the Midwest during the 1920s perhaps. A small rag doll dances and flays as she clutches it in her hand. She laughs with her barefoot brother, who is clad in overalls, as he chases her around the yard with a grasshopper on his finger. She screams and giggles. Her father watches from the porch in a wooden rocker, laughing while mom gently scolds her brother.

We could see her taking a ride for the first time in an automobile, a small pickup with wooden panels driven by a young man with wavy curls. He smiles gently at her while she sits staring at the road ahead; a fleeting wisp of a smile gives her away. Her hands are folded in her lap, clutching a small beaded purse.

‘Enriched and Happy’

We could see her standing in a small church. She is dressed in white cotton, holding hands with the young man, and saying, “I do.” Her mom watches with tearful eyes. Her dad has since passed. Her new husband lifts her across the threshold, holding her tight. He promises to love and care for her forever. Her life is enriched and happy.

We could see her cradling her infant, cooking breakfast, hanging sheets, loving her family, sending her husband off to war, and her child to school.

We could see her welcoming her husband back from battle with a hug that lasts the rest of his life. She buries him on a Saturday under an elm, next to her father. She marries off her child and spends her later years volunteering at church functions before her mind starts to fade and the years take their toll and God says: “It’s time to come home.”

Adding Time but Not Life

This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip.

You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in a cage of bed rails and soft restraints meant to “keep her safe.”

She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew.

She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up, exposing the underlying bone, which now becomes ripe for infection.

‘We Stopped Seeing Her’

We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had.

We stopped seeing her, not intentionally perhaps, but we stopped.

This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”

I’ve been practicing emergency medicine for close to a quarter of a century now and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies that have been entrusted to us.

A Slow, But Enormous Change

This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted and a few generations have passed since the onset of the Industrial Revolution of medicine.

Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life.

Nearly 50 percent of the elderly U.S. population now die in nursing homes or hospitals. When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways.

‘What in the Hell Were You Thinking?’

We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heart beat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “What in the hell were you thinking?”

When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could, and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.

Complete Article HERE!

Professional death coaches: A new type of doula

Two B.C. women Explore the sacred journey between life and death

Alison Moore and Sue Berlie

By

Death is no stranger to two Okanagan women, who have guided their loved ones through the unique journey.

What’s new, however, is their growing role in helping the wider community embrace a different kind of death experience.

“There’s a lot of paradigm shift(ing) happening right now, people want to talk about it,” said Sue Berlie, shamanic coach, death walker and psychopomp.

Berlie, alongside Alison Moore, a life-cycle celebrant and sacred passages doula are also both trained as home funeral guides through the Canadian Integrative Network for Death Education and Alternation (CINDEA). They are also facilitators of the Okanagan Death Cafe.

Celebrant Alison Moore

Death Cafes were created in 2004 and has spread around the world. The events offer unique opportunities for conversations about death, the dying process and preparation to be had. Through guided in-depth conversations with each other, participants find solace and a new understanding of a usually taboo subject. Currently, 6,588 Death Cafes have been hosted in 56 countries.

Berlie and Moore were drawn the worldwide Death Cafes because of their grassroots nature, and the high demand for people wanting to get more involved with the death and caring of their friends and family. They were also getting sick of the current “business” of dying.

“A lot of people want to die at home and aren’t given that opportunity, and when they do (die at home) we don’t let them lie there and have their friends and family come in where we can hold services … rather, the person dies and has been whisked off to a funeral home and everyone has been left there with a void,” Moore said.

Funerals cost somewhere between $1,000 to $12,000 according to Canadian Death Services Online , and B.C. currently has the highest rates for cremation in Canada.

Seventy per cent of North Americans prefer to die at home, and only seven per cent said they wanted to die in a hospice or palliative care home, in a survey conducted by Donna Wilson, at the University of Alberta. Wilson also teaches nursing and researches dying in Canada and the survey also found that 60 per cent of Canadians actually die in hospital and 10 per cent die in nursing homes.

Outside of religion, rituals to be held after death are lacking and that’s become a problem.

“People are having a deeper experience when helping and preparing for death, part of what we are excited about is helping people grieve well. You should die well and grieve well,” Moore said.

Moore’s education in the world of death and dying began when she found out she was expecting her first child and her best friend was diagnosed with stage four breast cancer.

 

“Here I was gestating life and my best friend was given three to six months to live. She ended up living on Elisabeth Kübler-Ross’ farm (a pioneer in near-death studies and author of On Death and Dying) and becoming one of the subjects in her book. She brought us on this journey of spiritual exploration with her,” Moore said.

Talking about death and dying hasn’t been difficult since that perspective-shifting experience. Now as a celebrant, Moore “marries and buries” people, guiding them through different life-changing experiences; the birth of a child, officiating marriages and officiating funerals.

Moore is now a certified death doula whose first guided her father through death.

“It was very interesting being on the inside, as a daughter, and being the person that was trying to hold space for the person I was caring for — it was an extraordinary experience. We are trained to focus on the person we are caring for, providing them with a beautiful quality of life and death. We are of service to the path that the person is taking, and it is a sacred one.”

Berlie, a psychopomp (a guide of souls to the place of the dead) takes a different spiritual journey in her work. There is no general scenario, as she works on a case by case basis. She can be there during a death, after, or if asked by a family member or the person who is dead to ensure their spirit is not trapped. Berlie also facilitates conversations, ceremonies and rituals. Berlie calls it dreaming themselves into their next life.

“It will always depend on what people believe, you have to stay within their beliefs, you cannot introduce anything. It is about them and what they want,” Berlie said. “Dreaming into what is next, is more of a conversation and I see that with the more Death Cafe’s we hold, the more people become open to other things and they start to explore within themselves wondering “well maybe my body doesn’t just shut down and that’s it for my spirit.””

Sue Berlie

Berlie works alongside spirit guides, spirit animals and the realms to help spirits continue onto the journey of what is next.

Her work began when she was 18 years-old and her best friend died suddenly in a car accident.

“He stood there clear as day and talked to me the night he died— I later went to a psychic 30 years later and she said “Oh who is that over your left shoulder? You have a bright gold orb hovering there, he hasn’t left your side.” It was my friend and he didn’t realize he was dead. He is my spirit guide and I believe he helps me in my work.”

Berlie later volunteered at a hospice and found she was not able to help people in their last stage of life in the way she felt compelled to. She changed her career in order to strengthen her ability as a psychopomp by becoming a shamanic practitioner, and certified death walker. Shamanic practitioners are healers who move into an altered state of consciousness to access a hidden reality in the spirit realms with the purpose of bringing back healing, power and information.

As a death walker Berlie accompanies people as the go onto their journey towards death, nurturing, enhancing and strengthening the capacity of the person about to die. While providing legal and practical knowledge to them and the family.

The next Okanagan Death Cafe series has yet to be scheduled but the women have decided to host them bi-monthly instead of annually to accommodate and continue the conversations around death and dying.

“What I would like to see and what is beginning in these dialogues on death and dying is, that people are opening up to the fact that the one thing we know when we are born is that we are going to die. We need to start embracing in our daily lives, because each day is a gift,” Alison Moore said.

For more information, or to find a Death Cafe near you please visit www.deathcafe.com

Complete Article HERE!

Fewer Americans are spending their final days in the hospital and more are dying at home

A woman receives hospital-level care from a nurse in her home. More Americans are opting to spend their final days at home instead of in a hospital, according to a new study.

By

The American way of dying seems to have become less frantic, desperate and expensive.

That’s the upshot of a new study that finds that seniors insured by Medicare who died in 2015 were less likely to do so in a hospital and more likely to pass away in a home or other community setting than those who died in 2000.

The new research also showed that the proportion of American seniors who were admitted to the intensive care unit during their final month of life has stabilized after rising between 2000 and 2009. By 2015, 29% of dying patients insured by Medicare spent part of their final month of life in the ICU.

The study also chronicled a slight decline in the proportion of Medicare patients who spent time on a ventilator during their final days and whose last three days of life were affected by a transfer from one institution to another — say, from a nursing home to the hospital.

The findings were published this week in the Journal of the American Medical Assn. They were based on an analysis of records from 1,361,870 Medicare fee-for-service enrollees and 871,845 Medicare Advantage enrollees who died between 2000 and 2015. Their average age at their time of death was 82.

In all, just short of 20% of Medicare-insured patients who died in 2015 did so in an acute-care hospital, down from 32.6% who did so in 2000. Some 40% of these patients died in a home, hospice, assisted living facility or other community setting in 2015 — up from about 31% in 2000.

Those shifts took place during a period of sweeping changes in U.S. medical care.

As the 21st century got underway, palliative care gained a foothold in U.S. hospitals. This new medical specialty focused on improving the quality of life for very ill patients.

Then, with the adoption of the Affordable Care Act in 2010, hospitals adjusted to new rules aimed at improving the quality of care and reducing expensive patient readmissions.

A woman holds the hand of her husband, who is in hospice care. More Americans are opting to spend their final days outside of a hospital setting, according to a new study.

Meanwhile, doctors and hospitals began a vigorous reassessment of the way they cared for patients who were approaching the end of their lives. Studies chronicled many terminal patients’ tumultuous final days of treatments that were invasive, painful and futile. Other research toted up the traumatic stress experienced by surviving family members.

Physicians began to ask themselves and their patients whether their profession’s dedication to such “heroic measures” were saving patients’ lives — or poisoning their deaths.

In 2014, that debate culminated in a report by the National Institute of Medicine that defined a “good death” as one that is “free from avoidable distress and suffering for patients, families and caregivers” and “in general accordance with patients’ and families’ wishes.”

A patient’s death in the intensive care unit “is seldom viewed as a good death,” concluded the report, issued by the National Academies of Sciences, Engineering, and Medicine.

“There was a greater collective awareness that not all medical interventions are equally beneficial, and that the potential harms of some needed to be weighed,” said Dr. Diane E. Meier, a geriatrician and palliative care specialist who directs the Center to Advance Palliative Care and was not involved in the new research.

A greater focus on the comfort and values of seriously ill patients went hand in hand with the widespread adoption of palliative care teams in hospitals across the United States. These teams included specialists in pain management, mental health, legal and social work, and pastoral care, and they’ve been key in helping clarify what kind of lives — and deaths — patients with serious illnesses want. Then they help those patients and their families plan accordingly.

In 2000, fewer than 20% of hospitals with more than 50 beds had a palliative care team in place. By 2015, close to 70% of such hospitals did, according to a registry maintained by the Center to Advance Palliative Care.

“It’s impossible to say what’s at work here,” said Meier, who underscored that the new study shows a broad trend but does not delineate contributing factors. The changes came against the backdrop of significant shifts in insurance, institutions and professional practices, she said.

The analysis also yielded a wealth of small details about changing practices in end-of-life care.

For example, the study found that the use of hospice services by dying patients increased from 21.6% in 2000 to over 50% in 2015. And the proportion of patients in the study who died after getting only brief hospice services — for three days or fewer — dropped slightly, from 9.8% in 2009 to 7.7% in 2015.

The share of patients who had three or more hospitalizations in their last 90 days of life declined from 11.4% in 2009 to 7.1% in 2015. And the share of patients who spent part of their final four days on a ventilator fell from 3.1% in 2000 to between 2.5% and 2.7% by 2015.

Complete Article HERE!

Mindfulness And Meditation Can Make Your Final Days More Bearable

By Cassie Steele

Death is a one-way journey into the unknown and, as with any other journey you may have undertaken, it will go smoother if you are prepared as can be.  Being somewhat wary of death is natural with even the most spiritual and religious people being saddened at the thought of both their own deaths and the deaths of those they love. The reason death is not generally welcomed with open arms is that, after centuries of trying to understand it, it still remains a great unknown to most of us.  This is where mindfulness can be of most benefit – when the uncertainty surrounding death is strongest. By becoming mindful you will likely find yourself not only being more at peace with your situation but able to find joy and happiness in your surroundings even in the final days leading up to your passing. It will also enable you to view death as the inescapable yet strangely beautiful part of life that it is.

Mindfulness may help you to get comfortable with death

The emotional and spiritual acceptance of your own mortality is the greatest gift you can give yourself. Although dwelling on death continuously isn’t healthy, mindfulness can be very effective in reducing the tremendous anxiety we often experience when nearing our time of death.  Being mindful of your own death entails you coming to terms with your fate, facing your fears head-on and acknowledging your feelings. As difficult as it may seem, it is important to be at ease with all your varied thoughts regardless of how warped they may seem.

While it is near impossible to eradicate all the suffering involved in dying, it is possible to create a place to positively deal with anger, grief, and denial.  Once you become accustomed to practicing mindfulness you will find yourself feeling a lot calmer and ready to live your remaining life to the fullest. In his novella ‘The Canterville Ghost’ Oscar Wilde wrote: “Death must be so beautiful. To lie in the soft brown earth, with the grasses waving above one’s head, and listen to silence. To have no yesterday, and no to-morrow. To forget time, to forget life, to be at peace.” Once you become mindful of your own death, this is how you can perceive their own death as well.

Alleviate your discomfort

Apart from conventional medication and pain-relief strategies, there are a number of holistic approaches that can be employed to alleviate discomfort.  Adapting to a sensory experience helps to nurture joy and mindfulness. We are capable of reducing the physical pain we experience when we focus all our attention on what we see, smell, hear, taste or feel.  Although this may seem slightly far-fetched, the phenomenon has been documented in a range of scientific studies which includes ground-breaking research by American professor emeritus of medicine Jon Kabat-Zinn. The research showed that stress reduction based on mindfulness can drastically reduce pain as well as the depression and anxiety associated with coming to terms with your impending death. Once again take comfort in knowing that death is as natural a part of life as breathing is, and it is, in essence, nothing to fear.

Make your last days meaningful

We often hear people proclaim that we need to ‘live every day like it is your last’ and to ‘make every second count’ and that is exactly what you need to do as you near the end of your life. You have, after all, only been granted with a single shot at life and the least you can do is to make it as memorable as possible. By being mindful and practicing meditation, you can ensure that you get as much out of a day as is humanly possible. Be careful not to limit your mindfulness and apply it in all aspects of your life. You can even be mindful when eating, paying close attention to the entire process. Appreciate the smell and sight of your food, how it feels when you bring the fork or spoon closer to your mouth and how the food tastes. The same process can be applied to anything from sitting on your porch overlooking the garden to having a relaxing bath. Engaging in simple yet effective daily meditations that focus on breathing and pain reduction can help make someone’s final days substantially easier to endure.

Regardless of your spiritual or religious orientation, you are bound to benefit from engaging in end-of-life mindfulness and meditation. There is no rule book with regards to being mindful – by simply following basic guidelines and applying them to the areas of your life that will benefit the most from it, you will reap the countless rewards that being aware holds. Find solace in knowing that death is merely another journey you are about to undertake and one that you have the option of embracing with the same joy and vigor as you did life.

 

Palliative Sedation, an End-of-Life Practice That Is Legal Everywhere

Jennifer Glass, a well-known San Francisco public relations executive, asked her husband, Harlan Seymour, to photograph her every day after her lung cancer diagnosis. Glass, an aid-in-dying advocate, died under palliative sedation in 2015, a year before a new California law allowing medically assisted suicide took effect.

Toward the end, the pain had practically driven Elizabeth Martin mad.

By then, the cancer had spread everywhere, from her colon to her spine, her liver, her adrenal glands and one of her lungs. Eventually, it penetrated her brain. No medication made the pain bearable. A woman who had been generous and good-humored turned into someone hardly recognizable to her loving family: paranoid, snarling, violent.

Sometimes, she would flee into the California night in her bedclothes, “as if she were trying to outrun the pain,” her older sister Anita Freeman recalled.

Martin fantasized about having her sister drive her into the mountains and leave her with the liquid morphine drops she had surreptitiously collected over three months — medicine that didn’t relieve her pain but might be enough to kill her if she took it all at once. Freeman couldn’t bring herself to do it, fearing the legal consequences and the possibility that her sister would survive and end up in even worse shape.

California’s aid-in-dying law, authorizing doctors to prescribe lethal drugs to certain terminally ill patients, was still two years from going into effect in 2016. But Martin did have one alternative to the agonizing death she feared: palliative sedation.

Under palliative sedation, a doctor gives a terminally ill patient enough sedatives to induce unconsciousness. The goal is to reduce or eliminate suffering, but in many cases the patient dies without regaining consciousness.

The medical staff at the Long Beach acute care center where Martin was a patient gave her phenobarbital. Once they calibrated the dosage properly, she never woke up again. She died within a week, not the one or two months her doctors had predicted before the sedation. She was 66.

“At least she got into that coma state versus four to eight weeks of torture,” Freeman said.

While aid-in-dying, or “death with dignity,” is now legal in seven states and Washington, D.C., medically assisted suicide retains tough opposition. Palliative sedation, though, has been administered since the hospice care movement began in the 1960s and is legal everywhere.

Doctors in Catholic hospitals practice palliative sedation even though the Catholic Church opposes aid-in-dying. According to the U.S. Conference of Catholic Bishops, the church believes that “patients should be kept as free of pain as possible so that they may die comfortably and with dignity.”

Since there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal, said Timothy Quill, who teaches psychiatry, bioethics and palliative care medicine at the University of Rochester Medical Center in New York.

Some doctors are hesitant about using it “because it brings them right up to the edge of euthanasia,” Quill said.

But Quill believes that any doctor who treats terminally ill patients has an obligation to consider palliative sedation. “If you are going to practice palliative care, you have to practice some sedation because of the overwhelming physical suffering of some patients under your charge.”

Doctors wrestle with what constitutes unbearable suffering, and at what point palliative sedation is appropriate — if ever. Policies vary from one hospital to another, one hospice to another, and one palliative care practice to another.

Not Euthanasia

The boundary between aid-in-dying and palliative sedation “is fuzzy, gray and conflated,” said David Grube, a national medical director at the advocacy group Compassion and Choices. In both cases, the goal is to relieve suffering.

But many doctors who use palliative sedation say the bright line that distinguishes palliative sedation from euthanasia, including aid-in-dying, is intent.

“There are people who believe they are the same. I am not one of them,” said Thomas Strouse, a psychiatrist and specialist in palliative care medicine at the UCLA Medical Center. “The goal of aid-in-dying is to be dead; that is the patient’s goal. The goal in palliative sedation is to manage intractable symptoms, maybe through reduction of consciousness or complete unconsciousness.”

Other groups such as the National Hospice and Palliative Care Organization, which advocates for quality end-of-life care, recommend that providers use as little medication as needed to achieve “the minimum level of consciousness reduction necessary” to make symptoms tolerable.

Sometimes that means a light unconsciousness, in which the patient may still be somewhat aware of the presence of others. On other occasions it might mean a deep unconsciousness, not unlike a coma. In some cases, the palliative sedation is limited; in others it continues until death.

Whether palliative sedation hastens death remains an open question. Pain-management doctors say sedation slows breathing and lowers blood pressure and heart rates to potentially dangerous levels.

In the vast majority of cases, it is accompanied by the cessation of food, drink and antibiotics, which can precipitate death. But palliative sedation is also administered when the underlying disease has made death imminent.

“Some patients are super sick,” Quill said. “The wheels are coming off, they’re delirious, out of their minds.”

In that circumstance, palliative sedation doesn’t accelerate death, he said. “For other patients who are not actively dying, it might hasten death to some extent, bringing it on in hours rather than days.” He emphasized, however, that in all cases the goal isn’t death but relief from suffering.

One review of studies on palliative sedation concluded that it “does not seem to have any detrimental effect on survival of patients with terminal cancer.” But even that 30-year survey acknowledged that, without randomized control trials, it’s impossible to be definitive.

‘Existential Suffering’

There is widespread agreement that palliative sedation is appropriate for intractable physical pain, extreme nausea and vomiting when other treatments have failed.

Doctors are divided about whether palliative sedation is appropriate for alleviating suffering that is not physiological, what medical journals refer to as “existential suffering.” The hospice and palliative care group defines it as “suffering that arises from a loss or interruption of meaning, purpose, or hope in life.”

Some argue that such suffering is every bit as agonizing as physical suffering. Existential suffering is the motivation that prompts many to seek aid-in-dying.

Terminally ill patients who took their own lives under Oregon’s aid-in-dying law were far less likely to cite physical pain than psychosocial reasons such as loss of autonomy, loss of dignity or being a burden on loved ones.

Using palliative sedation to relieve existential suffering is less common in the United States than it is in other Western countries, according to UCLA’s Strouse and other American practitioners. “I am not comfortable with supplying palliative sedation for existential suffering,” Strouse said. “I’ve never done that and probably wouldn’t.”

Elizabeth Martin, standing between her cousin Tamra Halfacre, left, and sister Anita Freeman. Martin, who had colon cancer, died in 2014 under palliative sedation administered to relieve intractable pain. While aid-in-dying is legal in seven states and Washington, D.C., palliative sedation, in which terminally ill patients are rendered unconscious to relieve intractable suffering, is legal everywhere in the United States.

In states where aid-in-dying is legal, terminally ill patients rarely choose between aid-in-dying and palliative sedation, said Anthony Back, co-director of the University of Washington’s Cambia Palliative Care Center of Excellence. In Washington, patients with a prognosis of six months to live or less must make two verbal requests to their doctor at least 15 days apart and sign a written form. They also must be healthy enough to take the legal drugs themselves.

“If you are starting the death-with-dignity process, you’re not at a point where a doctor would recommend palliative sedation,” Back said. “And with terminal sedation, the patient doesn’t have that kind of time and is too sick to take all those meds orally,” he said of the aid-in-dying drugs.

But Back does tell terminally ill patients who don’t want or don’t qualify for aid-in-dying that, when the time is right and no other treatments alleviate their symptoms, “I would be willing to make sure that you get enough sedation so you won’t be awake and miserable.”

Whether palliative sedation truly ends suffering is not knowable, although doctors perceive indications that it does.

“You might be able to tell if their blood pressure goes up. Same with their pulse,” said Nancy Crumpacker, a retired oncologist in Oregon. “And you read their faces. If they are still bothered somehow, it will show in their facial expression.”

Jennifer Glass with her husband, Harlan Seymour, after she was diagnosed with cancer.

Harlan Seymour didn’t need to rely on those signs after his wife, Jennifer Glass, a well-known San Francisco public relations executive, received palliative sedation in 2015. A nonsmoker, she had metastatic lung cancer and faced a miserable death from suffocation brought on by fluids filling her lungs, her husband said.

She desperately wanted to die, he said, but aid-in-dying, which she advocated for, wasn’t yet legal. Instead, she received palliative sedation.

“The expectation was this cocktail would put her into a peaceful sleep and she would pass away” within a day or two, Seymour said. “Instead, she woke up the third night in a panic.”

Doctors upped her dosage, putting her into a deep unconsciousness. Still, she didn’t die until the seventh day. She was 52. Seymour wishes aid-in-dying had been available for his wife, but he did regard palliative sedation as a mercy for her.

“Palliative sedation is slow-motion aid-in-dying,” he said. “It was better than being awake and suffocating, but it wasn’t a good alternative.”

Complete Article HERE!

Doing Death Differently

Death doulas: the end-of-life guides who are recreating the dying experience

By Isabel Bird

When Rebecca Lyons’ great aunt died, her body remained with the family.

Her aunt’s body was kept cool with the use of dry ice for four days, and the family washed and dressed her for service, held ritual, and prepared themselves for saying goodbye.

“We had candles, we burnt frankincense … it was a gentle process because there was no loss of ownership. It was about coming together and having that time, to laugh and cry, and it wasn’t all doom and gloom,” Ms Lyons said.

“You have looked after this person in life and now you are going to look after this person in death … the whole experience is precious.”

It was a personal death-care experience for Ms Lyons that was also connected to her new role as a death doula.

Doula in Ancient Greek translates to “woman of service” and is traditionally used in the birthing sector, but has been adopted by the death-care movement.

A death doula, end of life doula, deathwalker or death midwife can be hired by a dying person or their family to offer support in a multitude of ways, which can include organising alternatives to conventional funeral home offerings.

Their services ultimately depend on individual need and choice but can range from pre- and post-death planning, assistance with wills or advance care directives, bedside vigils, and the organisation of counselling, respite or other therapies.

Planning options may include dying at home, keeping the body at home for one day or more before burial or cremation, or holding family-led funerals in alternative spaces such as in the home, in the backyard, on a beach or in a forest.

Ms Lyons, a former funeral director, became a qualified death doula four months ago, offering the service as part of her death-care advocacy business You n Taboo.

She said a death doula helped people to make informed decisions, and then worked with families to help carry out those decisions.

“There is so much involved in the death and dying process, yet there is a lack of community knowledge about it,” Ms Lyons said.

“From the point of death a nurse might say ‘which funeral director should we call?’ The question should actually be ‘do you want a funeral director called?’ Right from the start, there is a lack of information given (in the institutional space),” she said.

“When someone dies the family can legally take the body home. Funeral directors are not mandatory, there doesn’t need to be embalming or temporary preservation, coffins are not necessary, and there are choices about the funeral and where it is held, or if they even have one.”

Ms Lyons said planning for death can be beneficial for families because it takes the guess work out of wondering what their loved ones want, and can be beneficial for the dying as they can focus on spending time with family.

Zenith Vorago is the founder of the Natural Death Care Centre in Byron Bay, which has offered deathwalker training for 12 years.

She started working with dying people 25 years ago after dissatisfaction with the conventional way of doing death, which generally involves hiring a funeral home director and relinquishing control of the body.

“We didn’t want to give our people to the medical system, or to funeral directors we didn’t know,” she said.

Ms Vorago explained that the funeral industry in Australia is led by one corporation that had a monopoly over various links in the chain, from funeral homes and crematoriums down to coffin makers.

“There is a lot of money to be made and in my experience people don’t mind paying for a service but they don’t want to get ripped off.”

Ms Vorago also said the health care system would soon not be able to cope with the ageing population, and more people in society would need to care for their own dying.

“What we are doing is skilling people up, so they can participate in that role with some awareness about how to do that well and how to do it with the system (such as) using community nurses,” she said.

“We are empowering people to know what their options are, to consider what is best for them and their people, to make decisions that are right for them, so people die well.”

Social worker Lynne Jarvis has completed Ms Vorago’s deathwalker training, and runs JUMAVE on the North-West Coast.

Her business adopts a holistic, social justice approach to death, offering a range of pre- and post-death services similar to that of a death doula, including funeral celebrancy and the use of cooling blankets for at-home funerals.

Ms Jarvis is also responsible for organising the Coffin Club at Ulverstone, where people can make their own coffins and have open, end-of-life conversations.

She said increased family involvement in the death care process can lead to highly meaningful experiences, and provided the example where an individual held a wake before their expected death.

“It ended up being really beautiful experience for them, it was well planned and simple. As sad and painful as it was, there was still beauty and joy in that process on reflection.”

Ms Jarvis stressed that early planning was important.

“I am focused on training the after-death care (family and friend) network to make sure they know what they need to do,” she said.

“It does take more energy and time … but there is great value and healing, and that healing is really important for the longer term bereavement of those left behind.”

Alternative options, such as taking the body home, will never alleviate grief but it can ease the process.

Ms Lyons said that when someone dies people often feel a loss of control, which is heightened when the body is taken away.

“It brings a massive, massive trauma that adds to the grief … what we are saying to people is that you don’t actually have to do that,” Ms Lyons said.

“For those who suit the conventional processes there are funeral directors out there who do an absolutely almighty job, but, it is a choice.”

She added that alternative options are actually a return to the old way of doing things.

“My grandmother would tell me stories where Mrs so-and-so from three doors down died, and everyone turned up with casseroles, and the body was in the lounge room. People gathered, they mourned and grieved together. The community used to own it. We are reclaiming this lost knowledge,” she said.

“Death has an amazing way of pulling people together, and the process that my family went through, looking after my great aunt – that was truly beautiful.”

Complete Article HERE!

What the Living Can Learn by Looking Death Straight in the Eye

By Parul Sehgal

“The road to death,” the anthropologist Nigel Barley wrote, “is paved with platitudes.”

Book reviewers, I’m afraid, have played their part.

The robust literature of death and dying is clotted with our clichés. Every book is “unflinching,” “unsparing.” Somehow they are all “essential.”

Of course, many of these books are brave, and many quite beautiful. Cory Taylor’s account of her terminal cancer, “Dying: A Memoir,” is one recent standout. But so many others are possessed of a dreadful, unremarked upon sameness, and an unremitting nobility that can leave this reader feeling a bit mutinous. It’s very well to quail in front of the indomitable human spirit and all that, but is it wrong to crave some variety? I would very much like to read about a cowardly death, or one with some panache. I accept, grudgingly, that we must die (I don’t, really) but must we all do it exactly the same way?

Enter “Advice for Future Corpses (and Those Who Love Them),” by the writer, palliative-care nurse and Zen Buddhist Sallie Tisdale — a wild and brilliantly deceptive book. It is a putative guide to what happens to the body as it dies and directly after — and how to care for it. How to touch someone who is dying. (“Skin can become paper-thin, and it can tear like paper. Pressure is dangerous.”) How to carry a body and wash it. How to remove its dentures.

But in its loving, fierce specificity, this book on how to die is also a blessedly saccharine-free guide for how to live. There’s a reason Buddhist monks meditate on charnel grounds, and why Cicero said the contemplation of death was the beginning of philosophy. Tisdale has written extensively about medicine, sex and faith — but spending time with the dying has been the foundation of her ethics; it is what has taught her to understand and tolerate “ambiguity, discomfort of many kinds and intimacy — which is sometimes the most uncomfortable thing of all.”

Sallie Tisdale

It should be noted that this book is not for the queasy. Frankly, neither is dying. Tisdale writes calm but explicit descriptions of “the faint leathery smell” of dead bodies and the process of decomposition. “A dead body is alive in a new way, a busy place full of activity,” she writes. She offers paeans to the insects that arrive in stately waves to consume the body — from the blowflies that appear in the first few minutes of death to the cheese skippers, the final guests, which clean the bones of the last bits of tendon and tissue.

This is death viewed with rare familiarity, even warmth: “I saw a gerontologist I know stand by the bedside of an old woman and say with a cheerleader’s enthusiasm, ‘C’mon, Margaret. You can do it!’” Tisdale writes. She walks readers through every conceivable decision they will have to make — whether to die in the hospital or at home, how to handle morphine’s side effects and how to breathe when it becomes difficult (inhale through pursed lips).

To the caretaker, she writes: “You are the defender of modesty, privacy, silence, laughter and many other things that can be lost in the daily tasks. You are the guardian of that person’s desires.”

“Advice for Future Corpses” also offers a brisk cultural history of death rituals and rites, from traditional Tibetan sky burials to our present abundance of options. You can have your ashes mixed into fireworks, loaded into shotgun shells or pressed into a diamond. You can ask to be buried at sea (but don’t — too much paperwork). You can be buried in a suit lined with micro-organisms and mushrooms to speed decomposition, or let a Swedish company cryogenically freeze your remains and turn them into crystals. If you’re in Hong Kong or Japan, you have the option of virtual graves, where flowers can be sent by emoticon.

Tisdale’s perspective is deeply influenced by her Buddhist practice, never more so than when she considers how the mind might apprehend death as it nears: “Consciousness is no longer grounded in the body; perception and sensation are unraveling. The entire braid of the self is coming unwound in a rush. One’s point of view must change dramatically.”

Tisdale does not write to allay anxieties but to acknowledge them, and she brings death so close, in such detail and with such directness, that something unusual happens, something that feels a bit taboo. She invites not just awe or dread — but our curiosity. And why not? We are, after all, just “future corpses pretending we don’t know.”

Complete Article HERE!