‘Being the Smoke’: One Man’s Choice to Be Cremated Under the Open Sky

A small Colorado town maintains the country’s only public outdoor funeral pyre. Philip Incao saw it as his own perfect ending.

The cremation of Dr. Philip Incao at the country’s only public open-air funeral pyre in his adopted hometown, Crestone, Colo. His shrouded body was laid on a metal grate and covered completely with wood.

By Ruth Graham

Philip Incao was about 6 years old when he asked his mother if it was true he would die. Yes, she replied. And what happens afterward? he asked.

“Nothing,” she said. “You just die, that’s all.”

It was a profoundly unsatisfying answer, and one that Dr. Incao later identified as the starting point for a lifetime of study.

He pursued a path that wound through medical school, training in holistic healing and devotion to the early 20th-century esoteric Rudolf Steiner, a polymath who theorized that the spiritual world could be explored through scientific methods.

Decades of searching led him all the way to an unconventional decision about what would happen to his body after his death.

Before Dr. Incao died of prostate cancer on Feb. 28 at age 81, he arranged for a cremation in his adopted hometown, Crestone, Colo., at the country’s only public open-air funeral pyre.

“All the old forms, all the old rituals, are being loosened up,” he explained in interviews in the months before his death. And through this type of cremation, he planned to be a part of that shift.

He knew his body would be wrapped into a simple shroud, carried on a wooden stretcher into an enclosure, and placed on a platform a few feet from the ground. His sons and his wife would light the fire and watch his body burn for several hours. The next day, they would collect the ashes. He had attended several cremations at the pyre, and he was ready.

Dr. Incao’s family members carried his body to the pyre.
Dr. Incao’s family members carried his body to the pyre.
The pyre itself is a utilitarian structure: two waist-high stuccoed concrete walls lined inside with firebrick, and spanned by a plain metal grate.
The pyre itself is a utilitarian structure: two waist-high stuccoed concrete walls lined inside with firebrick, and spanned by a plain metal grate.

About 70 people have been cremated at the pyre in Crestone since it opened more than a decade ago. Its services are restricted to residents and landowners in Saguache County, with a population of less than 7,000 people spread across some 3,000 square miles.

Set inside a circular wooden fence a few miles out of town, with the Sangre de Cristo range of the Rocky Mountains looming in the background, the pyre itself is a utilitarian structure: two waist-high stuccoed concrete walls lined inside with firebrick, and spanned by a plain metal grate.

The simple design represents a defiant upending of American death rituals. Instead of a body being whisked away by a funeral home, it stays on view at home for several days. And rather than being chemically “preserved” and placed in a sealed coffin, it remains on ice, but otherwise in its natural state.

“Burial as a practice in the U.S. is basically designed so that the American family doesn’t have to deal with the dying,” Dr. Incao reflected in December. By then, he was mostly confined to his bed, where he rested, met with friends, sorted through his belongings, and read books about reincarnation and near-death experiences.

More than half of Americans are cremated after death, a remarkable change from the 20th century, when it was “completely against American sensibilities,” said Gary Laderman, a professor in the department of religion at Emory University. But Crestone’s approach goes even further, defying one of traditional cremation’s core promises, to make the body disappear quickly and invisibly. A body on the pyre turns into ash and smoke while friends and family keep vigil for hours under the open sky.

Community cremation sites are commonplace in some parts of India, but they remain taboo in the United States. A Buddhist retreat center in northern Colorado maintains a private pyre, but efforts to open public sites like Crestone’s have faltered, running up against squeamish cultural sensibilities about death.

“Burial as a practice in the U.S. is basically designed so that the American family doesn’t have to deal with the dying,” Dr. Incao reflected in December.
“Burial as a practice in the U.S. is basically designed so that the American family doesn’t have to deal with the dying,” Dr. Incao reflected in December.
Dr. Incao spent his life exploring the teachings of Rudolf Steiner, which guided his interest in philosophy and spirituality as well as his approach to his medical career.
Dr. Incao spent his life exploring the teachings of Rudolf Steiner, which guided his interest in philosophy and spirituality as well as his approach to his medical career.

“Folks who haven’t had direct experience of open-air cremation, whether it’s in Colorado or in Asia, can have some pretty strange associations,” said Angela Lutzenberger, a hospice chaplain who bought 63 acres of land in Dresden, Maine, that she hopes to turn into a pyre site. “They build up creepy ideas about what it could be.”

It is not a coincidence that Crestone is the pyre’s home. About 200 miles south of Denver, the former gold mining town has attracted a population drawn to Eastern religious practices and wisdom traditions for decades. Its reputation solidified in the 1980s, when a Danish-born spiritual seeker and her oil magnate husband established a sprawling development just outside town that bills itself as the “largest intentional, interreligious and sustainable living community in North America.”

The winding roads around that development — with street names like Serene Way and Jubilant Way — lead to several towering Buddhist shrines, retreat centers and a spiral ziggurat commissioned in the 1970s by the father of Jordan’s Queen Noor. Some locals refer to a “vortex” of energy in the area.

“There’s no other place quite like this in America,” said Dr. Incao’s son Sylvan, who visited his father there often over the years.

Sylvan had come to Crestone on a chilly week in March that would culminate in his father’s cremation. Fliers with information about the ceremony were posted at the health food store and the cafe next door, which function as the town’s social center. “Please carpool whenever possible,” the flier read. “Pyre lit at 8 AM.”

Bruce Becker, left, and Noah Baen, treasurer of the Crestone End of Life Project, stood in the smoke during Dr. Incao’s cremation.
Bruce Becker, left, and Noah Baen, treasurer of the Crestone End of Life Project, stood in the smoke during Dr. Incao’s cremation.Credit…
A vista of the San Luis Valley above Crestone.
A vista of the San Luis Valley above Crestone.

Dr. Incao had moved to Crestone with his second wife, Jennifer, in 2006, after practicing “anthroposophic” medicine — a Steiner-inspired holistic approach that many mainstream physicians characterize as pseudoscience — in upstate New York and Denver.

Dr. Incao graduated from the Albert Einstein College of Medicine in New York City, but his career radically changed course when he was introduced to alternative medicine and Steiner’s work. Steiner lectured widely on topics including philosophy, Christianity, finance, architecture and art. His ideas about education led to the Waldorf school movement; his thinking on agriculture inspired biodynamic farming.

Steiner’s view of medicine was a revelation for Dr. Incao. He went on to spend his life exploring the teachings of Steiner, whose work guided not just his interest in philosophy and spirituality but his medical career.

He believed in reincarnation, which he felt gave a sense of purpose to life. And he was devoted to the idea of what he considered a “natural” approach to medicine.

For Dr. Incao, that meant choices that would seem extreme to many, even some members of his family. He strongly opposed vaccination, publishing articles and offering testimony against childhood vaccines and eventually opposing the Covid-19 shots. When he became sick, he declined traditional treatments for his cancer, including chemotherapy. He was at home in Crestone, where many residents are skeptical of traditional medicine.

Dr. Incao believed that the moment of death was just the beginning of “the process of separation of the human identity,” which he said took about three days.

And why be cremated outdoors? “You do it because it makes a lot more sense than the alternative, which is giving the body over to the undertaker,” he said. He decided on cremation after moving to Crestone, and officially signed up about four years ago.

Sylvan, 49, and his brother Sebastian, 47, supported their father’s plans, which they saw as in keeping with his spiritual sensibility and nonconformist streak. “He loved nature,” said Sebastian, an acupuncturist in New York. “It seemed like a very powerful way to liberate his spirit.”

Sebastian, right, and Sylvan supported their father’s plans, which they saw as in keeping with his spiritual sensibility and nonconformist streak.
Sebastian, right, and Sylvan supported their father’s plans, which they saw as in keeping with his spiritual sensibility and nonconformist streak.
Stacks of cedar are carried to the clay oven.
Stacks of cedar are carried to the clay oven.

Their older brother, Quentin, 51, was not so sure. He knew his father was a nonconformist, but he was still shocked when Dr. Incao told him about his intentions, on one of Quentin’s visits from his home in Montana. “It just didn’t make sense to me, I couldn’t understand it,” he recalled. He had agreed to be a pallbearer, but he was dreading the action of physically placing his father’s body on the pyre.

At a memorial service a few days before the cremation, the three brothers, their families and others gathered in Jennifer’s backyard art studio for a ceremony and eulogy delivered by a priest from the Christian Community, a small religious movement inspired by Steiner.

Dr. Incao’s body lay in repose at the front of the room, with wreaths of fresh carnations and other flowers on his body. “Into the calm of soul being walks the soul of our dear Philip,” the priest said, reading from a hand-transcribed book of sacred texts. “He is now on the other side of the threshold but his love has not stopped.” At the small outdoor reception afterward, deer grazed in the yard.

“It’s one of the most beautiful volunteer activities,” said Fane Burman, who has assisted at about a dozen cremations, helping stack the wood and tending to it as it burns. The nonprofit that operates the pyre, the Crestone End of Life Project, provides about a dozen local volunteers for each cremation. Although Mr. Burman does not always know the person who has died, “once the fire gets burning it brings tears to my eyes.”

Funeral guests delivered offerings of flowers and juniper boughs atop Dr. Incao’s body.
Funeral guests delivered offerings of flowers and juniper boughs atop Dr. Incao’s body.
About 70 people have been cremated at the pyre in Crestone since it opened more than a decade ago.
About 70 people have been cremated at the pyre in Crestone since it opened more than a decade ago.

On a cool Saturday, the family gathered at 7 a.m. to accompany Dr. Incao’s body from his home to the pyre about four miles west. A volunteer had wrapped the body in a shroud of sheets the night before and covered it in roses. The stretcher was carefully loaded into the back of Sylvan’s black pickup truck, and Quentin and Sebastian rode in the back with their father — “our last moments with him,” Quentin said. The truck slowly turned right at a small hand-painted sign reading “Pyre.”

By 7:30 a.m., about 70 people lined the path into the pyre site. A volunteer rang a bell to signify the start of the ceremony, and another played a tune on his handmade flute as the procession wound its way to the inside of the fence. The pallbearers laid the stretcher on the metal grate.

Dr. Incao’s ceremony began with family members and friends laying juniper branches and flowers on the body. Incense burned in a terra cotta pot tended by a volunteer, while others added logs until they were piled above the rim of the pyre. Then Jennifer and Dr. Incao’s sons lit large sticks in the incense pot and ignited the pyre together.

As the fire started to burn, Sylvan put his arm around Sebastian. A harpist played a tune as the flames crackled. Quentin wiped tears from his eyes, from smoke or emotion or both.

Smoke billowed thickly for about 10 minutes, and died down. By then, fire was putting off enough heat to warm the circle. Flaky ashes swirled in the air, which smelled of incense.

A “threshold choir,” which specializes in singing for the dying, performed some of the tunes they had sung for Dr. Incao in his last few months. “Safe passage, pilgrim of the spirit,” they sang. “We are all just walking each other home.”

Sylvan spoke about how he had always teased his father about wearing so many layers, always being cold. “With the fire going, he’s warm enough,” he concluded with a smile. Another friend performed a “hallelujah” — another Steiner concept — in which she solemnly circled the pyre, lifting and lowering her arms, moving forward and backward.

Quentin, who had questioned his father’s plans from the start, watched the ceremony quietly and intently. “It was almost like a weight lifted, to know he’s moved on,” he said later, as the crowd dispersed and the ashes smoldered.

He knew, in the end, it was what his father had wanted.

“He was looking forward to being the smoke.”

Complete Article HERE!

‘Death Doulas’ Help Patients With Cancer Face Their End of Life With Courage and Meaning

Dying does not have the be scary, and there are resources available to help patients and their loved ones, explained an expert.

By

Better care is needed for patients with late-stage cancer who may be facing the end of their life, and death doulas — also referred to as “soul doulas” or “end-of-life doulas” — may provide a resource that help patients and their family members cope with this difficult stage, according to Lorraine Holtslander.

“A death doula has education and expertise to support persons and families facing serious illnesses, including through death and grief,” Holtslander, a professor at the University of Saskatchewan College of Nursing in Canada, said in an interview with CURE®. “The doula provides support to access needed resources, make the best decisions and planning and preparing ahead for critical illness.”

Death doulas can help “fill the gaps” between the clinical and personal side of care, explained Holtslander, as they aid patients and families in navigating the health care system while also ensuring that important aspects such as their culture, gender and sexuality are honored through the end of their life. They may also offer services such as aromatherapy and music therapy.

“More people are wanting to take control over how they manage life-threatening illnesses, be supported to do their own future planning and move away from a strictly medical approach to death and dying, toward a more natural end of life,” she said.

Holtslander noted that death doulas are just one aspect of often-underutilized end-of-life-care resources that may be available for patients and their families. She mentioned that palliative care is always appropriate for patients with serious illnesses like cancer and ensuring that patients’ wishes are met starts with a conversation.

“It is so important to know what are the values, wishes and beliefs of the person facing serious illness or end of life so that the best decisions will be made,” Holtslander said. “We all face end-of-life at some point. Let’s make it the best experience, filled with courage and meaning, as there are many choices and options to bring comfort to the person and family.”

Options for patients with late-stage cancer may include palliative care, which focuses on symptom management and psychosocial wellbeing and hospice, which is care for the end of life.

“Patients with advanced cancer should access palliative and hospice care sooner, rather than later, in the process, which research shows will increase both the quality and quantity of their days and time,” Holtslander said. “If a patient is wanting to die at home, supports can be in place, such as the palliative care team, hospice resources and information, and doulas to support family caregivers.”

Death doulas not only help the patient through the end of their life, but also support loved ones through the grieving process after the patient with cancer dies. These professionals may be utilized at any time throughout the process, from completing the advanced-care plan up until and after death.

“Death doesn’t need to be scary of painful; it can be a very beautiful, truly spiritual experience,” Holtslander said.

However, more needs to be done for patients with late-stage cancer facing the end of their life, according to Holtslander.

“We can do better for people with advanced cancer, providing them with the best options, individualized plans of care, and more control over what is happening to them,” she concluded.

Complete Article HERE!

Coming to terms with a patient death

By Ben Pilkington

Death, of course, is a part of life for everybody. And for doctors, death comes with the territory of being a healer. Despite enduring more exposure to death than most, physicians still experience strong and lasting emotional reactions to it, including intense feelings about their own professional responsibility and competence.

COVID-19 brought this burden on doctors and other healthcare workers into sharp focus. Healthcare workers are dealing with mass mortality at a time when patients need more help than ever, but fewer resources are available to treat them.

This article examines how patients’ deaths affect their physicians, and how deaths from once-in-a-generation catastrophes like COVID-19 have complicated these encounters. We look at the stigma surrounding doctors and their emotions, and how such attitudes jeopardize healthy coping. Finally, we explore strategies that doctors can use to deal with patient death.

How do patient deaths affect physicians?

Even the most experienced physicians can have difficulty coping when a patient dies. Despite this—and despite the fact that physicians are confronted with death more than the average person—there is scant research examining how exposure to death affects them.

Available literature suggests that more exposure to patient death is strongly linked with more work-related stress, according to an article published in BMC Medical Education. Stress caused by the death of a patient at work can lead to burnout, which data suggests affects nearly half of all doctors treating terminally ill patients. To make matters worse, a high level of stress negatively impacts the quality of patient care, note the authors of a study published in BMJ Supportive and Palliative Care.

Sometimes, doctors feel the effects of a patient’s death long after it occurs. Feelings of numbness, guilt, and stress after a patient dies are common in the short term, but when surveyed, 61% of physicians reported that the most memorable patient death they witnessed continued to be a source of emotional distress for them in the long term, noted the BMC authors.

Patient deaths in the emergency department (ED) can be especially tough for doctors to deal with. There is typically no established patient-doctor relationship and death can occur suddenly, even in young and otherwise healthy patients, leading to more distress and emotional trauma for the healthcare workers tasked with preventing death from occurring, the authors added.

This takes its toll. According to a survey cited in the BMC article, 28% of ED doctors have considered quitting and 32% have thought about changing professions.

COVID-19 made it harder to cope with patient deaths

Dealing with medical emergencies means ED doctors are typically exposed to more sudden deaths than other physicians. But with the outbreak of COVID-19, doctors were confronted with unprecedented levels of patient death alongside increased demand for healthcare services, fewer resources per patient, and less time to do their jobs.

Together, these stressors are sometimes referred to as “cumulative grief,” a phenomenon that data from the US Department of Health and Human Services (HSS) suggests negatively impacts physicians’ health and the care they provide.

“Under normal circumstances, healthcare workers have more time to grieve and manage stress following the death of a patient. With increased deaths, the behavioral health impact of grief and the risk of burnout increase. This can result in compassion fatigue, low morale, exhaustion, burnout, and errors that could harm patient care,” according to the HHS report. You can read more about compassion fatigue and burnout here.

Systemic attitudes toward physician grief

Physicians recognize the need to help a patient’s bereaved family members and friends cope with death—breaking bad news is part of the job. But there is no standard advice for physicians who need that same support.

Traditional medical culture hasn’t looked kindly upon doctors’ emotional responses to death, notes psychologist, speaker, and author Elaine Kasket of London Metropolitan University, in a blogpost with BoardVitals.

“It is socially ingrained through medical school, and the cultures in both the UK and US medical establishments see a physician’s emotional response to death as a sign of weakness and even incompetence,” she said. “It feeds into this popular image of the physician as some kind of superhuman ultimate rescuer of human life; unable to do his or her job if they give in to or even acknowledge their emotions.”

Confronting this issue requires a fundamental change in the medical community’s perspective and policy. “There needs to be a sea change in medical culture to make support available,” she said, “and for it not to be stigmatized, to help physicians cope with grief, depression, despair or sadness.”

Strategies for coping with patient death

Out of necessity, and often in the place of a glaring absence of strategies in their training, physicians often develop their own ways of coping with their patients’ deaths. Sometimes, these coping mechanisms are unhealthy, such as when a doctor dons a morbid sense of humor (although some researchers maintain humor is healthy), tries to become numb to death, or externalizes the problem, as with alcohol abuse or overeating, according to the BoardVitals blogpost. Click here to read more about the drinking habits of doctors and the pandemic.

According to an article published in the Journal of Graduate Medical Education, oncologists at Memorial Sloan Kettering Cancer Center in NYC responded to the dearth of resources for physicians coping with death by introducing their own method, known as “Patient Death Debriefing Sessions.” Introducing these short sessions gave resident oncologists and other members of the treatment team a practical way to address their emotional needs after a patient died.

Patient death debriefing sessions were less than 10 minutes long, held within 24 to 28 hours of the death, consistently held after each patient death, and led by the attending physician. The sessions focused on residents’ emotional reactions to patient deaths, guided by a pocket card tool.

Memorial Sloan Kettering residents reported finding these sessions to be helpful and educational.

There is no shortage of techniques available—including yoga, mindfulness, exercise, and healthy hobbies—to help physicians relieve some of the stress and personal grief they feel when a patient dies. Read about some of those techniques here. And, of course, any physician needing support can lean on family members and friends, reach out to a counselor, and/or find a grief support group.

Just as important, however, is that doctors must give themselves permission to grieve—and society and the medical establishment can help take pressure off physicians by realizing they may need to grieve in the face of death, like any other human being.

Complete Article HERE!

Preparing Yourself or a Loved One to Die at Home

by Ray Burow

Death is not a fun topic, but failing to talk about end-of-life plans results in a lack of preparation and exacerbates emotional strain when a loved one passes away at home.

If your loved one opts to live out their final days in their house, or if you care for an elderly spouse or parent who’s in the advanced stages of Alzheimer’s disease, they could die at home. Are you prepared? What are your loved one’s end-of-life wishes? Would they choose to pass away at home? Is hospice care an option, or is a hospital setting a better choice for your circumstances? Medicare often pays for hospice care.

Why some people prefer to die at home

Passing away at home is often preferred by critically ill or older individuals. According to the Stanford School of Medicine, studies indicate that 80% of Americans would choose to pass from this life surrounded by what’s familiar to them, preferably at home. However, many don’t get their wish. Only 20% of Americans die at home, while 60% die in acute care hospitals and 20% die in nursing homes.

People prefer to die at home for various reasons, but perhaps control is a primary contributor. The family can manage who comes and goes, providing an opportunity to gather, reminisce, and properly say goodbye. Caregivers administer palliative care in a comfortable, familiar environment rather than one that is foreign and starkly sterile.

Hospice care will assist with pain management, and no heroic actions are taken to resuscitate the patient, who is allowed to slip away. Depending on the laws in your state, you may be able to keep the body at the house for a period of time, and some families may choose to have the funeral at home, too.

How to prepare for a death at home

Preparing to die at home is a process that must occur before the person’s final days. If you or a loved one has been diagnosed with dementia, it is essential to decide in the early days of the condition, while the decision is still yours to make. Caregivers and loved ones, acting as surrogates, can carry out your wishes, but only when they know what they are.

Advance directive

An advance health directive is crucial to securing end-of-life wishes. It’s a legal document containing the patient’s desires. If the patient is incapacitated, the document expresses their values regarding end-of-life processes. These include whether first responders and healthcare professionals will administer CPR, if the patient will donate organs, and what comfort measures will be in place during the dying process.

When a person dies at home unexpectedly and without an advance directive, first responders typically can’t pronounce them dead, as required by law. Paramedics transport the remains to the nearest hospital emergency room, where a doctor will pronounce them. If hospice is in place, the hospice nurse can pronounce the person’s death at home, and the family arranges for a funeral home to remove the remains.

Without hospice, a living will, or an advance directive, the family must call emergency services when their loved one dies at home. Paramedics, possibly firefighters, and police officers will arrive at your home, but only a doctor or coroner can pronounce death.

Understand that without the proper documents in hand, paramedics have to follow protocol and will often begin administering emergency procedures and transport your loved one to a hospital where a doctor with authority to pronounce can do so. There are exceptions to this rule depending on where you live, and in some cases, paramedics are permitted to pronounce.

Following death

Some states require an autopsy when a person dies at home. If the deceased was advanced in age, an autopsy might not be necessary. In either case, you must make arrangements for transportation to a funeral home or crematorium. Don’t be shy to ask about cost. Funeral homes are required by law to provide that information when requested.

There is much more to preparing for death at home than what we can briefly discuss in this column, including the emotional and spiritual aspects and mourning through the grieving process. Mourning is necessary and healthy, and it’s futile to try and skip it. Grief will rise to meet you in unexpected places and at random times. A grief counselor, pastor, trusted friend, or family member can help you through the mourning process. You don’t need to mourn alone.

Complete Article HERE!

I grieve for my mum by making soup. Big or small, our death rituals matter

The pandemic has meant many of us are in mourning, but the things we do help us remember

It’s more what soup represents; it’s warm, it’s comforting, it’s schmeckt

By Eleanor Margolis

For the past few weeks, I’ve been making soup almost constantly. Never has a nervous breakdown smelled so savoury. Maybe not a nervous breakdown, exactly. But I always act oddly this time of year.

Or have done, at least, for the past four years, since my mum died on a November afternoon. This year, in a cyclone of chopped vegetables and stock that I’d attributed to it being “soup season”, it occurred to me that this was actually grief soup.

That I was channelling the sadness of another year without my mum into the repetitive actions – chopping, frying, blending – that come with obsessive soup-making.

It’s not that my mum herself made a lot of soup (although her cooking in general will always be one of my happiest memories of her).

It’s more what soup represents; it’s warm, it’s comforting, it’s schmeckt. Schmeckt is the Yiddish word my mum always used to describe something truly radioactive with flavour.

In a soup (if it’s any good) you have the deep brown savouriness of the stock merged with the sweetness of vegetables such as carrots and onions, and concentrated into pure schmeckt. You basically isolate everything delicious about each ingredient, and put it in a bowl. And it helps that I never feel so close to my mum as when I’m chopping an onion.

As year two of the pandemic starts to wrap up, many millions of people are observing death anniversaries. Most are probably not making vats of grief soup, but we all have our rituals that help us remember those we’ve lost in the best possible light.

I know that anyone who saw a loved one in an ICU with Covid will have two conflicting images of that person.

I visited my mum in intensive care when she was dying of cancer, and the sight of her in a hospital bed, full of tubes, will always be at war with my memory of her bustling around a kitchen, making beautiful smells.

Death rituals, be it those entrenched in different religions and cultures, or those we invent ourselves, are designed to help us remember the good over the unspeakably awful. In November, of course, the entire country becomes enraptured by an increasingly divisive death ritual involving poppies and silence.

At the moment though, I’m still distracted by loss on a personal level. As well as the unofficial remembrance act of soup-making, this year I lit a yahrzeit candle for my mum. This is a Jewish death ritual. We aren’t a religious family at all, but I feel like she’d get a kick out of it.

A candle is standard remembrance fare for a reason; it’s somberly calming to stare into a flame as it dances with life, and think about decrying your mum for picking little piles of dead skin off her feet, only to have her reply, “You’ll miss me when I’m dead”.

After four years, she mostly just feels phenomenally far away. But still – I like to think – out there somewhere, watching me perform my stupid little rituals.

Maybe the dead have ways of remembering the living, too. Light years away, perhaps, my mum is cooking grief soup for me.

Complete Article HERE!

We all deserve a good death

– especially people living with dementia

On International Nurses Day (May 12), I commend the contribution made by all nurses involved in the care of people living with dementia in residential, home and community care, in hospitals and through clinics and health centres.

By Maree McCabe

Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.

People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.

While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.

People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.

Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.

Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.

I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.

The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.

The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:

  • Stay at home longer and maximise their independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision making
  • Avoid unnecessary presentations to acute hospital settings
  • Access clinical advice, including co-morbidity management, pain management, delirium and palliation.

The many benefits of the Nightingale Program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact for guidance
  • Advice provided in home, residential aged care, community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and carers
  • Interdisciplinary teamwork throughout the health and care networks.

I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.

Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.

Complete Article HERE!