Cultural Expressions – Page 96 – The Amateur's Guide To Death & Dying

December 28, 2016December 26, 2016

Deaf and dying: How a volunteer team brings palliative care comfort through communication

The first experience Monica Elaine Campbell had with palliative care was helping a woman who had lost her ability to speak because of throat cancer.

Campbell, profoundly deaf since birth, is an excellent lip reader and staff at an Ottawa hospital asked if she could interpret the dying woman’s words. The woman had been communicating with paper and pen, but now was too weak even to do that.

“I was very hesitant. Then I thought, well, the least I could do is give it a try,” said Campbell, who is able to speak despite never having heard a word herself. “I put my hand on her right arm and said, ‘I’ve never done this before. I will try my best.”

Campbell leaned close as the woman mouthed her words. Campbell repeated it back and had the woman nod yes if she had understood correctly. She spent five hours with the woman, relaying messages between her and her family and the medical team. She was able to interpret about 85 per cent of what the woman told her.

“I came away a different person,” Campbell said. “I was very touched by the experience.”

The dying woman had not been deaf, but the experience got Campbell thinking about the communication needs of people like herself: the deaf and hard of hearing. A few years later, Campbell was asked to help a deaf friend who was about to receive bad news about her cancer diagnosis.

“I didn’t know much about palliative care, but she was struggling with her terminal illness,” Campbell said. “I thought, my goodness, what if that was me? I thought, I should talk to my deaf friends about death and dying and what our experiences have been.”

Those conversations led Campbell and her friend, sign language interpreter Christine Wilson, to start up the Ottawa Deaf Palliative Care Team, a group of volunteers that provide end-of-life care for the deaf and hard of hearing and their families. In 1999, she enrolled in palliative care courses at Algonquin College with two Deaf colleagues (the Deaf use a capital D to refer to the sub-culture of people who communicate with sign language; “hard of hearing” are those who have lost some or most of the hearing but can still use some speech, sometimes augmented with sign language; the “deafened” or “oral deaf” have lost some or all of their hearing, but either learned to speak before their deafness or, like Campbell, learned to speak despite it.)

Christine Wilson, left, is a sign language interpreter. She and Monica Elaine Campbell, who is completely deaf, founded the Ottawa Deaf Palliative Care Team in 2009.

The group then received additional training from Hospice Care Ottawa. It took five years to get up and running, but since 2009, the Deaf Palliative Care Team has helped inform and console the deaf and hard of hearing, breaking through their sense of isolation at the most frightening, most challenging time of their lives.

Last winter, Campbell was honoured with the Order of Ontario for her work advocating for the deaf in palliative care as well as the June Callwood Outstanding Achievement Award for Volunteerism.

“It’s a pretty scary thing to be in the health-care system,” said Lisa Sullivan, executive director of Hospice Care Ottawa. “You can imagine what it’s like for people who are deaf and to be at the end of life or actively dying and not have a way to communicate.”

Team members have also volunteered to work with the hospice to mentor new deaf volunteers. And they’ve been there, too, when some of their own members have been in palliative care.

The rights of the deaf are protected by the Ontarians with Disabilities Act, while federally, the rights of the deaf were recognized in a 1997 Supreme Court of Canada decision. Working toward the passage of a Canadians with Disabilities Act was the first item last fall on Prime Minister Justin Trudeau’s mandate letter to the Minister of Sport and Persons with Disabilities, Carla Qualtrough.

It’s a long way from how the deaf used to be treated. Wilson learned to sign because she was the hearing daughter of two profoundly deaf parents. She was just a young teenager when her father died of a brain tumour in 1964.

“For the four months he was ill, I bet he never fully knew what was wrong with him, what was happening or that he was going to die,” said Wilson, a former nurse who now works as a sign language interpreter.

“There were no such thing as interpreters, back then. The night my dad died, they never even called my mother to go and spend that last time with him. It was his brother, my uncle, who was with him and he was the one who called the house and said to us, as kids, ‘Tell your mother that your father has died.’

Even when Campbell’s own father died of cancer in 1993 in a Prince Edward Island hospital, she found herself struggling to understand what was going on and feeling excluded from the discussions.

“The doctor had a meeting with the family, but I wasn’t able to follow what they were saying. I felt very isolated,” she said. “I was very bothered that there wasn’t a system at the hospital to sit down with us as a family.”

The Ottawa Deaf Palliative Care Team sometimes has to get creative in its service. One woman they helped was deaf and had almost no vision. She was able to communicate in a form of sign language tapped on her skin, but the team had to devise a way to identify themselves. Campbell let the woman feel the heart-shaped pendant she wears. One doctor had the woman touch her long braids and stethoscope. Another let her feel his distinctive watch with its wide wrist band. It was the only way for the woman to know who she was communicating with.

“Our modus operandi is that you don’t get ready to serve the deaf when they show up,” Wilson said. “You have to be ready. At first, (the hospice) was very resistant to have Elaine or other members of our team be there as volunteers. But the more they worked with us, the more they could see that it just made sense. Yes, maybe it wasn’t going to be as clear communication … but it’s all rubbed off on the staff. They know when a deaf person comes, we will become a team so that one of us is there all the time.”

There’s a certain pride in being Deaf, but for Campbell that pride took a long time to come. A native of PEI, she was 15 months old before doctors knew for certain she could not hear. Her parents were determined that she would learn to speak, patiently drilling her for hours on how to form words. She attended a school for the deaf and grew close to her classmates, who were like another family to her, but didn’t learn to sign until she was an adult.

“It made me change my perspective. Growing up I felt like a broken person who didn’t quite fit in,” she said. “Then it just hit me one day – I’m a human being who happens to be deaf. I was 38 before I came to be at peace with myself and who I am.”

Complete Article HERE!

December 21, 2016December 20, 2016

Nine weird and wonderful facts about death and funeral practices

By Yvonne Inall

It might not be something you want to think about very often, but it turns out that the way we treat our dead in the modern age is heavily influenced by the way our ancestors treated theirs.

When you look at death and funeral practices through the ages, repeated patterns of behaviour emerge, making it easy to see where some of our modern ideas about death – such as keeping an urn on your mantelpiece or having a gravestone – have come from.

So here are nine surprising facts about death and funeral practices through the ages:

1. Some prehistoric societies defleshed the bones

This was done with sharp knives. And we know this because human skeletons buried during this period show the traces of many cut marks to the skulls, limbs and other bones.

During the medieval period, bodies that needed to be transported over long distances for burial were also defleshed – by dismembering the body and boiling the pieces. The bones were then transported, while the soft tissues were buried close to the place of death.

2. Throwing spears at the dead

During the Middle Iron Age, “speared-corpse” burials were a pretty big deal in east Yorkshire. Spears were thrown or placed into the graves of some young men – and in a couple of instances they appear to have been thrown with enough force to pierce the body. It is unclear why this was done, but it may have been a military send-off – similar to the 21-gun salute at modern military funerals.

3. The Romans introduced gravestones

As an imported practice, the first gravestones in Britain were concentrated close to Roman military forts and more urbanised Romano-British settlements.

Back then, gravestones were more frequently dedicated to women and children than Roman soldiers. This was most likely because Roman soldiers were not legally allowed to marry, so monuments to their deceased family members legitimised their relationships in death in a way they couldn’t be in life.

After the end of Roman control in Britain in the fifth century, gravestones fell out of favour and did not become widely popular again until the modern era.

4. The Anglo Saxons preferred urns

During the early Anglo-Saxon period, cremated remains were often kept within the community for some time before burial. We know this because groups of urns were sometimes buried together. Urns were also included in burials of the deceased – who were likely their relatives.

5. Lots of people shared a coffin

During the medieval period, many parish churches had community coffins, which could be borrowed or leased to transport the deceased person from the home to the churchyard. When they arrived at the graveside, the body would be removed from the coffin and buried in a simple shroud.

6. And rosemary wasn’t just for potatoes

Sprigs of rosemary were often carried by people in the funeral procession and cast onto the coffin before burial, much as roses are today. And as an evergreen plant, rosemary was associated with eternal life. As a fragrant herb, it was also often placed inside coffins to conceal any odours that might be emerging from the corpse. This was important because bodies often lay in state for days and sometimes weeks before burial, while preparations were made and mourners travelled to attend the funeral.

7. Touching a murderer could heal

Throughout early modern times, and up until at least the mid 19th century, it was a common belief that the touch of a murderer – executed by hanging – could cure all kinds of illnesses, ranging from cancer and goitres to skin conditions. Afflicted persons would attend executions hoping to receive the “death stroke” of the executed prisoner.

8. There are still many mysteries

For almost a thousand years, during the British Iron Age, archaeologists don’t really know what kinds of funeral practices were being performed across much of Britain. And human remains only appear in a few places – like the burials in east Yorkshire. So for much of Britain, funeral practices are almost invisible. We suspect bodies were either exposed to the elements in a practice known as “excarnation”, or cremated and the ashes scattered.

9. But the living did respect the dead

Across time, people have engaged with past monuments to the dead, and it is common for people to respect older features of the landscape when deciding where to place new burials.

Bronze Age people created new funeral monuments and buried their dead in close proximity to Neolithic funeral monuments. This can be seen in the landscape around Stonehenge, which was created as an ancestral and funeral monument – and is full of Bronze Age burial mounds known as round barrows.

And when the Anglo-Saxons arrived in Britain, they frequently buried their dead close to Bronze and Iron Age monuments. Sometimes they dug into these older monuments and reused them to bury their own dead.

Even today, green burial grounds tend to respect preexisting field boundaries. And in at least one modern cemetery, burials are placed in alignment with medieval “ridge and furrow”. These are the peaks and troughs in the landscape resulting from medieval ploughing.

Complete Article HERE!

December 19, 2016December 17, 2016

A good death

Yong Nie had no papers, no contact with family – and one last wish.

By Kate Legge

[F]or 20 years Yong Nie dodged Australian authorities by lying low, staying out of trouble, earning cash in hand through odd jobs, sleeping rough and keeping to himself. But when he developed an aggressive cancer, the game was up. Gaunt, jaundiced, his once dark hair streaked grey, the 68-year-old illegal immigrant turned up at the emergency department of Sydney’s St Vincent’s Hospital doubled in pain and fearing deportation. But instead of being thrown out, locked up and shipped off, he was welcomed by palliative care staff who took him in as one of our own.

The good death at the heart of this story confirms the generosity of ordinary people performing exceptional acts of compassion without triumphalism or reward because this is what they do every day. Few of those who crossed Nie’s path during the two months he spent at the inner-city hospital founded by the Sisters of Charity will forget him. They couldn’t cure his disease-ridden body but they worked tirelessly to heal a terrible burden in his soul. Those drawn to fulfil his dying wish came from different faiths and countries. There were doctors, nurses and social workers employed in this Catholic health service; monks and volunteers from the Nan Tien Buddhist temple near Wollongong; a Chinese community cancer support agency and Australian Embassy officials in Beijing. Racing against death’s advance, they embraced this fringe dweller who had fallen foul of officialdom with gracious gestures that celebrate the humanity of frontline carers while reminding us how lucky we are to live in a country where goodness thrives.

Yong Nie had not spoken to his wife or daughter since leaving the sprawling Chinese port city of Tianjin two decades ago bound for Australia, possibly on a business visa. It was a mission that went awry, humiliation eventually driving him to a flimsy existence with no fixed address, floating on the margins of a society he failed to join. The longer he hid from his family in silence, the harder it was to bridge the distance. He had no Medicare card, no identifying papers, no tax file number, no information about next of kin, and savings of $72.46 when he was admitted to palliative care in May. “There was nowhere else for him to go,” says Professor Richard Chye, director of the Sacred Heart palliative care unit at St Vincent’s. “We could not put him on the street. His cancer had spread to his liver; it was too late for treatment.”

Amid grim accounting of refugees around the world as well as those in offshore detention centres closer to our shores, here is an oasis where generosity of spirit is blind to colour, creed and citizenship. It doesn’t matter where you’ve come from, since everyone in these wards is contemplating death and energies are focused on journeying comfortably and peacefully to this end. “From a healthcare perspective we were not obliged to report him as an illegal immigrant,” Chye insists. “We provide spiritual care and support and if we reported him to the authorities he would have a lot more emotional angst and worry.”

With only a smattering of English, the patient spent the first week alone, sick and scared as social workers and nurses tried to gently tease out details that would help them look after him. “His biggest fear was that he would be kicked out of hospital,” says Michelle Feng, a Chinese-born nurse who speaks Mandarin. “But I reassured him that was not going to happen.” As luck would have it, her husband emigrated 16 years ago from Nie’s home city, southeast of Beijing. Concerned mainly with alleviating his physical duress, she did not pry. “He told me he’d lost contact with his family, that he had not spoken to them since he came to this country. I was curious,” Feng concedes.

“How can you have a father or husband and no contact? Maybe he was afraid to contact them,” she wonders before dismissing these niggling thoughts. “For me, a patient is a person. They all have their own needs and we have to adapt to them. He is a person who has been living underground but I didn’t ask the reason. I don’t know why. At the end of life everyone deserves to be treated as a human being. Really, we don’t have a lot of time.”

Prof Richard Chye with St Vincent’s Hospital palliative care unit staff; at right, Michelle Feng (white shirt) and Trish McKinnon (in black).

Social worker Trish McKinnon arranged for Mandarin-speaking volunteers from the Chinese community support group CanRevive to visit “Mr Nie” so they might better understand his circumstances and needs. Although he had inhabited a shadowland of sorts, he counted a few as friends. He’d helped a single mother in the Chinese community and for many years he’d served as a volunteer at the Nan Tien Buddhist temple, an hour from Sydney. There he got to know Stanley Wong, who came here from China 24 years ago. They cooked together for temple functions. Wong speaks limited English but tells me “we help each other”. Informed of Nie’s rapid decline, he arranged a roster of hospital visits with another Buddhist so that there would be bedside company for him almost every day.

Dr Kate Roberts, a passionate young member of staff, recalls witnessing the turnaround in the patient’s demeanour as the threads of connection were drawn together. “In the first week he had zero visitors. He was severely jaundiced, hardly speaking, and a little suicidal. He used to say, ‘Send me back to China or send me to a train station and I’ll sit there until I die’. But then people from the Nan Tien temple began to trickle in and he began to smile. He did a 180-degree switch.”

Michelle Feng says the presence of the Buddhists calmed him. “He’d been so worried and anxious and not able to sleep. But from the first time the Buddhists came to pray around his bed he told me, ‘The worry is gone’. ” He began to eat, requesting white rice congee — a simple dish of boiled rice with no seasonings — for every meal. Feng brought him pickles from home to flavour his food. Stanley Wong arrived with nourishing broth. Gradually Nie gained the confidence and courage to express his urgent desire to reconcile with the family he’d left behind.

Before coming to hospital he had approached the Red Cross for help in contacting his wife and daughter but the search had drawn a blank. Wong says Nie was “too scared” to approach any other agency. But the longing to make amends troubled him deeply. “He realised he was coming to the end of his life and his final wish was to contact his family,” says McKinnon. “He was too ill to travel and he had no passport so everyone went out of their way to achieve the goal of a man who was going to die. A reaffirmation of family began and there was this wonderful confluence of palliative care principles and Buddhist acceptance.”

The notion of “existential resolution” is central to the Sacred Heart unit’s philosophy of minimising pain and discomfort in the dance towards death while resolving emotional agitation and distress. “We try to ensure patients are physically and emotionally calm and prepared, ensuring peace at the end of life, so we try to assess appropriate information without being intrusive,” says McKinnon.

Once members of the palliative care team became aware of how much a reconciliation with his family meant to Nie, they enlisted the support of Wong, who had a friend who knew somebody in Tianjin, a vast metropolis with a municipal population of more than 15 million. Feng told Nie the city had grown and developed like topsy since his departure but hopes were pinned on the location of his elder brother, a secondary school physics teacher. Wong’s messenger found him within four hours of posting an alert on a missing person’s site.

This breakthrough led to an exchange of phone numbers for Nie’s wife and daughter, as well as news of a granddaughter, now four years old, and the revelation that Nie’s sister, who is based in Hong Kong, was visiting her son in Melbourne. She tells me through her English-speaking granddaughter that she had no idea of her brother’s whereabouts for the past 20 years: “He disappeared.” Those intent on facilitating a reunion stayed clear of the details that had conspired to keep members of this family apart. Feng set up the Chinese version of Skype so Nie could communicate with his wife and daughter. “It was quite amazing,” she recalls. “His wife and daughter were in tears. Everybody was crying. I didn’t want to intrude.”

A plan took shape for getting them to Australia. Wong shared the view of Sacred Heart staff that reconciliation would not only console the patient but also salve the heartache and bitterness of relatives bewildered by his unexplained absence for two decades. “He left his family. No contact. No money,” Wong says, still perplexed, even though he knows a little of the gambling problems that beset his friend. “He lost money. He couldn’t face them.” Now was not the time for recriminations. “They were very upset, very angry. It was very difficult. I told his daughter, ‘You should come and see your father otherwise you will never see him again’. ”

Wong collected money to help with the reunion. He pleaded with Nie’s wife and daughter to make the trip, convinced they would feel lighter for this rare chance to say goodbye. “I told them this was a time for forgiveness. Now was the time to put everything away, all the unhappy stories to one side so they could feel peace.” As Nie’s health deteriorated, hospital staff wrote to the Immigration Department to hasten visitors’ visas issued by embassy staff in Beijing. “It was absolutely amazing,” McKinnon says of the frantic efforts to expedite their journey before Nie took his last breath. Wife and daughter arrived at the hospital and were accommodated in a room near his. “We were so anxious about it. From my point of view this was unfinished business and I was sure that a reaffirmation of the family connection would help enormously … I walked them along the corridor to the room, explaining his physical state to prepare them. It was quite ethereal. When they walked in, he introduced them to us. He said, ‘This is my wife. This is my daughter.’ It was an absolute statement of connection,” she recalls.

“There were tears. They were quite overwhelmed by the face-to-face intimacy but they were pleased this had happened. There was not a lot of discussion about the intervening years. This was not the time to trawl through the past. Obviously there was grief from the missing years but there was no castigation at all, just a real sense of solidarity at the end of life.” Nie’s wife brought with her a yellow cloth inscribed with Chinese characters and laid it under his head. Wong explains this Buddhist tradition encourages serenity in death. “This releases the body and brings peace and silence before people pass away.”

Nie died the next morning. A senior monk from the Nan Tien temple was called in to lead prayers and chanting in the room where he lay. “It was very beautiful,” Wong says of his friend’s final hours. “I think we should all become Buddhists,” laughs McKinnon. “It was a wonderful outcome in every way.” Nie’s daughter accompanied the body to the temple for cremation and before their return to China they visited Nie’s sister in Melbourne. Another link mended in this long broken chain.

Complete Article HERE!

December 18, 2016December 15, 2016

Euthanasia and palliative sedation are distinct concepts – intent matters

Among doctors, there seems to be broad consensus about the relevance of double effect in end-of-life care.

Debate over euthanasia in Australia has been renewed by the recently failed bill to legalise it in South Australia, and the Victorian government’s announcement it will hold a conscience vote on assisted dying next year. As usual, parliamentary debates have spilt over into expert probing of current practices in end-of-life care.

From doctor and writer Karen Hitchcock to the Australian Medical Association, there seems to be broad consensus about the relevance of a doctrine called “double effect” in end-of-life care.

Double effect, in the most general sense of the term, is the view that a doctor acts ethically when she acts with the intention of bringing about a good effect, even if certain undesirable consequences may also result.

While doctors agree double effect is a useful principle, there is disagreement about how it applies in end-of-life situations.

On one account, the doctrine can be applied to both palliative sedation and euthanasia. The former is the alleviation of symptoms in terminally ill patients using sedative drugs. The latter is the active killing of a patient by administering sedative barbiturates, such as Nembutal.

Some doctors suggest that, under the double effect doctrine, palliative sedation can be applied more liberally. The relief of pain can actually result in the death of a patient, which means palliative sedation can cover many of the cases of individuals seeking euthanasia.

The argument then is, because palliative sedation does the same work as the euthanasia law is intended to cover, we needn’t create a law to legalise euthanasia; we need only clarify existing law on double effect and palliative sedation. I’ll call this the “minimalist thesis”.

But there is a strong argument to suggest the minimalist thesis is untenable. Euthanasia and palliative sedation are categorically distinct. This is because the intent – which is the operative word when it comes to moral philosophy and to legal principles – of doctors in each of the interventions is different.

In palliative sedation, doctors administer pain relief with the primary intent of relieving pain. In the case of active euthanasia, doctors administer barbiturates with the primary intent of ending the patient’s life.

What is double effect?

The so-called doctrine, or principle, of double effect is a philosophical concept often employed when evaluating the morality of actions. It rests on the basic conviction that in morality intentions matter, and that a person’s intentions are what make their actions moral or immoral.

There are various formulations of the doctrine, depending on which ethical, religious or legal tradition you are approaching it from. We can nevertheless posit a generic definition along the following lines:

The doctrine of double effect states, where certain criteria are met, a person acts ethically when acting to bring about a good or morally neutral outcome – even though her action may also have certain foreseen, though not intended, undesirable consequences.

In the end-of-life context, for example, the ethical act to bring about a morally neutral outcome would be administering pain medication. The potentially unintended consequence would be death.

An important phrase in the above definition is “where certain criteria are met”. Depending on the tradition you work in, these criteria will vary. There is, nevertheless, broad consensus about the following criteria:

We cannot intend the bad effect
The “bad” of the unintended consequences cannot outweigh, or be greater than, the intended “good” outcome
The good effect must not be produced by means of the bad effect.

The bad of the unintended consequences cannot outweigh, or be greater than, the intended good outcome.

It is generally said doctors should have, as their primary intent, the relief of suffering and not some goal that, while perhaps acceptable, is not within the purview of the role of doctor – such as ending a person’s life.

Doctors draw on double effect in serious cases where a treatment has certain foreseen, undesirable consequences. This may be minor or major injury to the patient, or even perhaps the hastening of death.

Palliative sedation v euthanasia

Doctors typically administer palliative sedation only in the last days or hours of a patient’s life. This involves using sedative drugs to relieve acute symptoms of terminally ill patients where other means of care have proven ineffectual. These symptoms are known as refractory symptoms, and include vomiting, delirium, pain and so forth.

The sedative drugs that doctors administer – the most common of which are benzodiazepines such as Valium – render the patient unconscious or semi-conscious. Often these are administered in gradually increasing doses, depending on how long and to what extent doctors want to sedate the patient.

Sometimes the drugs administered may hasten death. Crucially, though, the primary intent of doctors is to relieve unbearable or otherwise untreatable suffering.

In the case of euthanasia, however, to state it tersely, a doctor or other health-care professional seeks to kill the patient. Medical euthanasia is administered in response to suffering, be it of a patient who is terminally ill, afflicted by intense and prolonged physiological suffering, or by psychological or existential suffering.

Muddying the waters

Monash bioethicist Paul Komesaroff and others have suggested that, instead of legalising euthanasia in Australia, we should clarify the law on double effect and palliative sedation.

The minimalist approach has the added benefit we needn’t get involved in placing arbitrary restrictions on end-of-life care – as legislators are wont to do with euthanasia law.

Yet this argument equivocates on the nature of palliative sedation. In cases where patients still have six months to live, or where their suffering is broader than ordinary refractory symptoms, it is not permissible to provide palliative sedation – at least, not according to existing ethical guidelines.

If this were to be done, the primary intention would not be to relieve suffering but rather to hasten or actively bring about the patient’s death. Even if one wished to suggest our ultimate intent were to relieve suffering, we would nevertheless be using the bad consequence as a means to that end. This violates one of the generally agreed upon criteria employed when invoking the doctrine of double effect.

We stand to lose rather than gain from muddying the waters around double effect and palliative sedation. The real question legislators need to consider is this: should the state sanction the active killing of terminally ill patients by their doctors? We do ourselves a disservice to pretend euthanasia is anything other than this.

Complete Article HERE!

December 3, 2016December 1, 2016

What matters most at the end of life?

By Rabbi Bonnie Koppell

On July 14, 2014, my husband David and I sat down with our children to disseminate and discuss our health care advanced directives. It was David’s 69th birthday; he died about 2 months before his 70th.

David had endured several years of ill health, culminating in the removal of a kidney. In June, the month prior, we learned that the cancer had metastasized to his bones. As a couple, we wanted to make sure that all of the children understood our desires for end-of-life care. Thankfully we had had the foresight to discuss a broad variety of medical treatment options dispassionately, years before there was any urgent medical necessity. Suddenly those decisions became radically more real.

For 10 months, David endured two different rounds of chemotherapy, neither of which had the desired effect of stopping the cancer that was destroying his bones and causing unimaginable pain. He persevered through the agony of trying to move while his bones were crumbling. Radiation impacted his ability to swallow and to enjoy food, which became a non-option when he had a feeding tube inserted. We watched him fight and waste away, fight and waste away, yet always with the hope that one more treatment would be successful where others had failed.

We had talked about nutrition and hydration at the end of life, about ventilators and surgical intervention in the face of terminal illness, but we had not addressed the fundamental question that The Conversation Project urges us to consider: “What matters to you most at the end of life?”

Dr. Atul Gawande, author of “Being Mortal: Medicine and What Matters in the End” and a leading thinker about the role of the medical profession in caring for patients whose time is limited, reminds us that people have a broad variety of concerns besides prolonging their lives.

Doctors are trained to view death as the enemy and to battle on until the end. At some point, the battle was lost. Among David’s final words were, “Why didn’t he (the doctor) tell me it was so bad?”

Gawande writes that, while there is nothing wrong with sustaining hope, it is problematic if it prevents us from preparing for the more likely outcome.

He writes, “We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”

The Conversation Project is an important first step in considering what we each might value most if we have the luxury of knowing that our time is limited. What would be a good enough day to want to go on, and what is the tipping point where we would be ready to let go? The answer will be different for each of us, and we must have the conversation now.

David felt loved until the very end; he enjoyed the best possible support from friends, family and community. And, I wish that we had had more time to lay down our swords, to cease the raging battle, and to have quietly enjoyed more the time with which we were blessed.

Our culture is changing and growing and learning. The Deutsch Family Shalom Center at Temple Chai recently hosted more than 100 individuals who courageously undertook the first steps to have “the conversation.”

At 10:30 a.m. on Sunday, Jan. 8, we will gather to share our experiences and address other concerns as we move forward in these challenging and uncharted waters. Attendance at the first gathering is not required.

What a gift to our family and loved ones to ensure that our financial affairs are in order, our burial arrangements are understood, and to have articulated our answer to that question, “What matters to me at the end of life is…”

Complete Article HERE!

December 2, 2016December 1, 2016

Ancient Americans Mutilated Corpses in Funeral Rituals

By Tia Ghose

A skull exhumed from the Lapa do Santo cave in Brazil shows evidence of modification such as tooth removal. Hundreds of remains from the site show that beginning around 10,000 years ago, ancient inhabitants used an elaborate set of rituals surrounding death.

Ancient people ripped out teeth, stuffed broken bones into human skulls and de-fleshed corpses as part of elaborate funeral rituals in South America, an archaeological discovery has revealed.

The site of Lapa do Santo in Brazil holds a trove of human remains that were modified elaborately by the earliest inhabitants of the continent starting around 10,000 years ago, the new study shows. The finds change the picture of this culture’s sophistication, said study author André Strauss, a researcher at the Max Planck Institute for Evolutionary Anthropology in Leipzig, Germany.

“In reconstructing the life of past populations, human burials are highly informative of symbolic and ritual behavior,” Strauss said in a statement. “In this frame, the funerary record presented in this study highlights that the human groups inhabiting east South America at 10,000 years ago were more diverse and sophisticated than previously thought.” [See Images of the Mutilated Skeletons at Lapa do Santo]

The site of Lapa do Santo, a cave nestled deep in the rainforest of central-eastern Brazil, shows evidence of human occupation dating back almost 12,000 years. Archaeologists have found a trove of human remains, tools, leftovers from past meals and even etchings of a horny man with a giant phallus in the 14,000-square-foot (1,300 square meters) cave. The huge limestone cavern is also in the same region where archaeologists discovered Luzia, one of the oldest known human skeletons from the New World, Live Science previously reported.

In the 19th century, naturalist Peter Lund first set foot in the region, which harbors some of the oldest skeletons in South America. But although archaeologists have stumbled upon hundreds of skeletons since then, few had noticed one strange feature: Many of the bodies had been modified after death.

In their recent archaeological excavations, Strauss and his colleagues took a more careful look at some of the remains found at Lapa do Santo. They found that starting between 10,600 and 10,400 years ago, the ancient inhabitants of the region buried their dead as complete skeletons.

But 1,000 years later (between about 9,600 and 9,400 years ago), people began dismembering, mutilating and de-fleshing fresh corpses before burying them. The teeth from the skulls were pulled out systematically. Some bones showed evidence of having been burned or cannibalized before being placed inside another skull, the researchers reported in the December issue of the journal Antiquity.

“The strong emphasis on the reduction of fresh corpses explains why these fascinating mortuary practices were not recognized during almost two centuries of research in the region,” Strauss said.

The team has not uncovered any other forms of memorial, such as gravestones or grave goods. Instead, the researchers said, it seems that this strict process of dismemberment and corpse mutilation was one of the central rituals used by these ancient people in commemorating the dead.

Complete Article HERE!

December 1, 2016December 1, 2016

Fighting for a good death

By The BBC

[M]alawi is one of the world’s least developed countries with very primitive health care. In March 1998, nurse Lucy Finch had visited her native Malawi to care for her sister who was dying of Aids, when hearing a young man’s agonising death made her decide to come back and set up Malawi’s first and only hospice.

In my view, the key ingredients for a “good death” are probably the same all over the world, in all cultures. The first is to know that you are about to die, not to have it hidden from you, and the second is to be kept, as far as possible, pain-free but alert.

This will give you the chance to prepare yourself, and those you care about, and thus approach your death with some equanimity. It is also preferable to be at home, and with close loved ones. This is your death, no-one else’s, and you want to handle it your own way.

In sub-Saharan Africa, although all of the above would be desired, the access to a pain-free death is highly unlikely unless you are near to a centre like ours at Ndi Moyo.

Local hospitals are extremely under-resourced

My own commitment to bringing the possibility of a pain-free death to my native Malawi began one night when I was spending time with my sister who was in hospital.

In the next room, a young soldier was dying in terrible agony because no-one had the drugs necessary to relieve his excruciating pain. I will never forget listening to his harrowing screams, as, all alone, he faced both suffering of such intensity it was tearing his very being apart, and the terror of the unknown journey into death ahead of him.

That poor young man, though he never knew it, changed my life and indeed the lives of the many others who were to be helped by the palliative care I determined that night to introduce.

The scourge of the HIV/Aids pandemic which swept sub-Saharan Africa in the 1980s like a biblical pestilence made more urgent than ever the need to assist people to a pain-free death.

The aggressive cancers associated with HIV did not carry off the elderly, but the sexually active age groups – the young and middle-aged. Unless palliative care could be introduced, the chances of a “good death”, pain-free but alert, were minimal. And that is how we started.

Unlike hospices in the West, we operate what we call “hospice at home”, and at our out-patients facility. Generally speaking, patients in Africa want to be with their families and close to their ancestors at this time of life. The caring atmosphere is generally missing within hospitals in Malawi because they are so under-resourced – for example, you need to take a relative with you, otherwise there would be no-one to give you a wash or feed you.

Providing palliative care at home means patients can remain in their community

It is important that palliative care starts at the point of diagnosis, not just as death becomes imminent. This provides an opportunity for the patient to deal with their fears about the future of those they leave behind, as well as fears for themselves.

These fears are entirely understandable because Malawi only has two oncologists for a population of nearly 17 million, and has no dedicated cancer centre. The available chemotherapy is largely palliative rather than curative.

There is also lack of early diagnosis so by the time the patients come to us the cancer is already advanced and for them the only option is palliative care.

Some 50% of people in Africa do not see a health worker their entire lives. They may use herbal medicines and traditional healers which are cheaper than Western-trained health workers. For example, in Uganda there is one traditional healer to 450 people and one doctor to 20,000.

Jonathan was suffering from oesophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home. — Jonathan was suffering from esophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home.

Our care is holistic, which means that our trained staff multi-task in the relief of social, psychological and spiritual pain, as well as physical, whereas in the West different professionals would deal with different aspects of care. We know that unless we deal with these other aspects of pain – the social, the psychological and the spiritual – the physical pain cannot be managed.

Ndi Moyo grows herbs as an affordable way to help their patients:

Lemon grass helps patients excrete toxins
Aloe is a good balm for wounds and acts as a useful laxative
Artemisia has powerful immunity-boosting properties
Papaya sap is useful as an antiseptic
Vinca rosa lowers the white blood cell count

Source: Ndi Moyo

Holistic and extended care offers the terminally ill the time to make peace with any with whom they have been in conflict, the chance to forgive and be forgiven, the chance to renew love and be loved.

I feel that sometimes in the West it is easier for a doctor to suggest another treatment to a patient rather than to have the more difficult conversation about whether it may be better not to continue to treat a serious illness, partly because expectations in the West are higher.

Holistic palliative care as practised here is not about adding days to life, but adding life to the days that remain.

Complete Article HERE!