Regina woman’s story reveals growing pains of assisted dying law

Jean Napali and her mother Ruth Schroeder.


By Jonathan Charlton

[I]n her last days, 93-year-old Ruth Schroeder lay in bed at Grace Hospice in Regina, slowly dehydrating herself to death because she wasn’t able to die on her own terms.

Schroeder had colon cancer and doctors declined to operate out of fear she wouldn’t survive surgery because of her age — an outcome she’d have been fine with, according to her daughter, Jean Napali, who lives in Vancouver. 

Partly that was because of the pain, but also because the painkillers made it hard to concentrate. Schroeder couldn’t really read, watch TV or even do the crossword puzzles she had long enjoyed.

“During the past year she had been making it very clear that she really was done,” Napali said.

Schroeder had talked with her family about ending her life, and with any doctor who would listen while she was in palliative care at Pasqua Hospital in June; she had followed the development of federal legislation for medical assistance in dying (MAID), which was passed by the Liberal government that month.

However, she then learned she had little time left.

“At that point mom felt very relieved that she only had three months to live and she kind of dropped talking about MAID because she was like, ‘There is going to be an end to this, maybe it’s not the route that I need to go,’ ” Napali recalled.

Schroeder lived at home for as long as she could over the summer, cooking her own meals and doing her own laundry with support from her children and a housekeeper. On Aug. 1, she fell in the middle of the night, aggravating the nerve centre on which her tumour lived; the lightest touch on her leg became excruciating. After two days in an emergency room, she was moved to the hospice. 

Napali is a mental health worker and her sister was a longtime nurse, so they were able keep their mom off drugs that harmed her quality of life. This included an anti-depressant Schroeder’s palliative team put her on after she expressed interest in MAID, Napali said.

The siblings feel their mother wasn’t taken seriously because of her age.

“As a family we were really floundering, trying to figure out how to put this in place. And it wasn’t until after she had died that we realized she could have signed the forms at the end of June when she was talking with the doctors about it and started the whole procedure,” Napali said.

When Schroeder told her she would stop eating and drinking, Napali called her mom’s doctor about ending her life. However, the doctor wasn’t available for a week. When she did arrive, Schroeder’s painkillers had been increased so much that while she knew her own name, she didn’t know the month and said the year was 1976 instead of 2016. The doctor deemed her not competent enough to consent.

“That upset us quite a bit because it was very clear that she was going to be in a lot of pain — that she was in a lot of pain — and that basically she would just be dehydrating to death over the next few days or weeks,” Napali said.

Saskatchewan Medical Association president Dr. Intheran Pillay.

The federal legislation does not allow for people to give advance consent, when drugs don’t cloud their judgment, for medical assistance in dying.

Because Schroeder wasn’t on any life-prolonging medications she could stop taking, it took her 16 days to fatally dehydrate.

“Somehow to me, that seems wrong, that she needs to suffer through that,” Napali said.

“If a dog was kept in a vet’s office to dehydrate to death for two weeks, everybody would be totally up in arms and be calling it inhumane. And that vet would probably lose his license. And yet for a person, that’s deemed acceptable,” she said.

“It was just really hard for us because as her children we knew what Mom wanted. She was ready to go and she wanted MAID but that wasn’t something that could happen for her. I don’t want other people to have to go through what we went through in terms of not having out mom’s wishes done.”

Aside from the roadblock imposed by the law, Napali was never clear on whether her mother’s doctor even agreed with MAID, and has come to believe most doctors in Saskatchewan won’t perform it. 

“I think doctors need to be really clear as to whether they are willing to go that route or not, and if they’re not they need to pass their patient on to somebody who is willing to take a look at that.”

The Saskatoon Health Region is considering a policy to protect the identities of health care providers who participate in medical assistance in dying, fearing that otherwise no one would be willing to provide the service.

The Saskatchewan Medical Association was unable to find any doctors who participate in MAID and were willing to be interviewed for this story. 

SMA president Intheran Pillay said some doctors are in favour of MAID, but others object and feel palliative care should be improved, believing that some requests stem from a lack of it. There’s no way of knowing what that split is, he said.

Jean Napali and her mother Ruth Schroeder.

Health care workers who provide abortions in the U.S. have suffered violence, and some fear similar retaliation around MAID, he said.

Some physicians may work in facilities such as Catholic Health Association hospitals which oppose MAID, and don’t want their beliefs public. Others don’t want their patients to distance themselves if they have different viewpoints, he said.

A person’s primary point of contact for MAID should still be their doctor, who can discuss all options to improve pain control and comfort, he said.

“In a majority of cases we’re able to keep the patient really well controlled with regard to pain. I’ve never, in the 24 years I’ve been in practice, had a problem in terms of referring patients to the appropriate specialist to get that patient the care that they need to make them comfortable.”

People seeking information can look up the websites of the College of Physicians and Surgeons of Saskatchewan, the Canadian Medical Association, the SMA and the Saskatchewan government, he said. SHR this month approved its MAID policy, which includes a decision-making guide.

Eight people in the province have received MAID since the legislation passed, according to the health ministry.

Complete Article HERE!

Nine weird and wonderful facts about death and funeral practices


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!

In Colorado, A Low-Price Drug Cocktail Will Tamp Down Cost Of Death With Dignity

The cocktail, which puts patients to sleep and then halts their heartbeat and breathing, has been used 38 times so far.

As Colorado’s aid-in-dying law takes effect this month, proponents say they’ll make sure terminally-ill patients have access to a new, affordable drug concoction that will avoid the $3,000 cost of a common lethal sedative that has skyrocketed in price.

Officials with Compassion & Choices, an advocacy group, are reaching out to pharmacies statewide to confirm that they’ll stock components of a lethal four-drug cocktail to substitute for secobarbital, known as Seconal, the pricey sleeping pill most often prescribed to induce death.

It’s the second time in a year that right-to-die advocates have come up with a substitute for Seconal after Canadian drugmaker Valeant Pharmaceuticals International Inc. acquired the medication in February 2015 — and abruptly doubled the $1,500 retail price.

“We were looking for something more affordable and available,” said Kat West, an attorney and policy expert with Compassion & Choices.

The new law, which was passed by a two-thirds majority, was signed into law on Dec. 16 by Gov. John Hickenlooper. Colorado joins five other states — Oregon, Washington, Vermont, Montana and California — in which terminally ill patients, usually those expected to live six months or less, can choose to take doctor-prescribed drugs to end their lives. In Oregon, at least 991 patients have died after taking drugs prescribed since the law took effect in 1997. In Washington state, at least 917 have died under terms of the law enacted in 2009.

Access to the medications can depend, in part, on cost. Many health insurance plans pay for aid-in-dying drugs, advocates said, but some don’t, and the medications aren’t covered by federal programs such as Medicare or Catholic-run health care systems. Medicaid programs for the poor and disabled in Oregon and California will pay, but not those in Washington state, Vermont or Montana. In Colorado, it’s still unclear.

That can create a barrier for terminally ill patients who want to use the law, said Beth Glennon, a client-support coordinator for End of Life Washington, an advocacy group.

“The cost does affect people’s decisions,” Glennon said.

As of March, the latest data available, a bottle of 100 capsules of 100-milligram Seconal had a retail price of $3,082, according to data from Truven Health Analytics. Ten grams is a lethal dose.

When Oregon’s law began, the cost was about $150, recalled Dr. David Grube, national medical director for Compassion & Choices and a family doctor who has practiced in the state for nearly 40 years. He calls the price hikes “an almost-evil practice of greed.”

“I think it’s the black side of capitalism,” he said. “It really breaks my heart.”

Valeant officials didn’t respond to requests for comment, but in March firm officials issued a statement saying that secobarbital is approved only for treating short-term insomnia, epilepsy and for use in pre-operative anesthesia.

“If it is being prescribed for off-label uses, it is not something for which the product is manufactured or intended,” the statement said.

To fight the high prices, doctors in Washington state experimented last year with a cheaper mixture that included three drugs — phenobarbital, chloral hydrate and morphine sulfate. The components are widely available and cost about $500 for a lethal dose. But the combination turned out to be too harsh, said Dr. Robert Wood, a volunteer medical adviser for End of Life Washington.

“The chloral hydrate mixture was too caustic for some folks and our volunteers didn’t like using it,” because some patients became distressed, Wood said.

Most doses of lethal medication are bitter, often requiring patients to take anti-nausea drugs. But the new mixture was not only bitter but also caused a burning sensation in the mouths of some patients, said Glennon. “There was some profound burning,” she said. “We didn’t like working with it. As a volunteer, you want to reassure people. We’re about a peaceful, dignified death.”

Wood and his colleagues came up with a new option this summer, a four-drug mixture that includes diazepam, digoxin, morphine and propranolol, known as DDMP. It costs between $300 and $600.

The mixture, which puts patients to sleep and then halts their heartbeat and breathing, has been used 38 times so far, Wood said.

“It is no more difficult than Seconal to ingest and it seems to work quite well,” he added.

The mixture has been used “a fair amount” in California, where an aid-in-dying law took effect in June, said Grube. It’s not yet known how many terminally-ill patients have died under that state’s law, but dozens have requested prescriptions, officials said.

Valeant was widely criticized for raising the price of secobarbital, a popular sedative in the 1960s and 1970s that lost its patent status in the early 1990s. It has been used for aid-in-dying patients since Oregon passed the first U.S. law in 1997, which was modeled on similar action in the Netherlands, where secobarbital was the drug of choice.

Another sedative, pentobarbital, was also frequently used, but supplies in the U.S. became expensive and scarce after European drugmakers objected to its use as an execution drug in death penalty cases.

Doctors and pharmacists are not obligated to participate in aid-in-dying treatment under existing laws, including the Colorado action. In a recent poll, about 40 percent of more than 600 doctors surveyed said they would be willing to prescribe lethal medication, 42 percent said they wouldn’t and 18 percent weren’t sure, noted Dr. Cory Carroll, a solo practice family physician in Fort Collins, Colo., who endorsed the measure.

“The docs that are in opposition have a right to their beliefs, but they don’t have the right to control others,” Carroll said in a recent press conference.

West of Compassion & Choices anticipates that Colorado’s law will be used immediately, as similar laws in other states have been.

“We’re already getting calls from terminally ill people in Colorado who want to access this law,” she said. “I fully expect people to begin requesting prescriptions.”

Complete Article HERE!

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!

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:

  1. We cannot intend the bad effect
  2. The “bad” of the unintended consequences cannot outweigh, or be greater than, the intended “good” outcome
  3. 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!

Healthcare and the Human Spirit

Walt Whitman on the Most Important Priority in Healing the Body and the Soul


“There is something in personal love, caresses, and the magnetic flood of sympathy and friendship, that does, in its way, more good than all the medicine in the world.”

By Maria Popova

[I]n the early 1860s, six years after he self-published Leaves of Grass, Walt Whitman (May 31, 1819–March 26, 1892) began volunteering as a nurse in the Civil War. Bravery and tragedy were odd bedfellows among the wounded and dying soldiers whom he visited, and bearing witness to their courageous suffering moved him deeply. These impressions permeated his later poetry and informed his prescient ideas about democracy.

Whitman recounted his wartime experience in a diaristic piece titled “Hospital Visits,” published in The New York Times in December of 1864 and later included in the indispensable Library of America volume Whitman: Poetry and Prose (public library).

“This tremendous war goes on,” Whitman writes. “Every family has directly or indirectly some representative among this vast army of the wounded and sick.” Overcome with irrepressible compassion for these men (and, lest we forget, the lot of unheralded women), he set out to alleviate their suffering by lifting their spirits — an intuitive application of what modern scientists know about how our minds affect our bodies.

Whitman recounts his daily rituals of care:

Devoted the main part of the day, from 11 to 3.30 o’clock, to Armory-square hospital; went pretty thoroughly through wards F, G, H, and I — some fifty cases in each ward. In Ward H supplied the men throughout with writing paper and a stamped envelope each, also some cheerful reading matter.

Whitman brought the soldiers all kinds of gifts to lift their spirits — from apples, oranges, figs, gingersnaps, and “first-rate preserved berries” to pocket change and small bills. “The poor wounded men often came up ‘dead broke,’” he explains, “and it helps their spirits to have even the small sum I give them.” His generosity extended beyond the material and into the metaphysical — he lent them his poetic talent and helped them write letters home, even love letters. (How electrifying to imagine a love letter to a young wife ghost-written by none other than Walt Whitman and to wonder how many such miraculous treasures might exist.)

But the greatest gift with which Whitman graced the soldiers was his generous, loving spirit. He describes his daily hospital routine and the larger ethos behind it:

My custom is to go through a ward, or a collection of wards, endeavoring to give some trifle to each, without missing any. Even a sweet biscuit, a sheet of paper, or a passing word of friendliness, or but a look or nod, if no more. In this way I go through large numbers without delaying, yet do not hurry. I find out the general mood of the ward at the time; sometimes see that there is a heavy weight of listlessness prevailing, and the whole ward wants cheering up. I perhaps read to the men, to break the spell…

He cautions against letting such charity bleed into condescension. (Then again, as Seamus Heaney reminded us, “the Latin root of condescension means we all sink” — and what more worthy an object of compassion than these wounded soldiers, literally sunk to the ground on the battlefields?) Whitman urges for the preservation of human dignity even amid these most dispiriting of circumstances:

He who goes among the soldiers with gifts, etc., must beware how he proceeds. It is much more of an art than one would imagine. They are not charity-patients, but American young men, of pride and independence. The spirit in which you treat them, and bestow your donations, is just as important as the gifts themselves; sometimes more so.

In a sentiment that jars with its devastating timeliness today, when the mainstream healthcare system has reduced patients to data points each allotted a set number of minutes to be logged on an iPad by their productivity-strained physician, Whitman adds:

Few realize that it is not the mere giving of gifts that does good; it is the proper adaption. Nothing is of any avail among the soldiers except conscientious personal investigation of cases, each for itself; with sharp, critical faculties, but in the fullest spirit of human sympathy and boundless love. The men feel such love more than anything else. I have met very few persons who realize the importance of humoring the yearnings for love and friendship of these American young men, prostrated by sickness and wounds.


To many of the wounded and sick, especially the youngsters, there is something in personal love, caresses, and the magnetic flood of sympathy and friendship, that does, in its way, more good than all the medicine in the world… Many will think this merely sentimentalism, but I know it is the most solid of facts. I believe that even the moving around among the men, or through the ward, of a hearty, healthy, clean, strong, generous-souled person, man or woman, full of humanity and love, sending out invisible, constant currents thereof, does immense good to the sick and wounded.

Complement Whitman: Poetry and Prose with the beloved poet on why a robust society is a reading society and this wonderful illustrated homage to his most beloved work, then revisit the science of how our psychological and physiological states affect one another.

Complete Article HERE!

Hospice care is an often overlooked Medicare benefit

By Cate Kortzeborn

[W]hen I talk to people with Medicare about planning for the end of their lives, the statistic that always strikes me is this:

If you ask people if they’d rather die in a hospital or at home, 75 percent say at home. But when you look at what actually happens, only 25 percent of people get to die at home, while 75 percent pass away in hospitals.

The only way you can ensure that your doctor understands your wishes is by talking about them. And now, Medicare will reimburse your doctor for that conversation.

This is called advance-care planning. It’s designed to help people with Medicare learn about various options for end-of-life care; determine which types of care best fit their personal wishes; and share their wishes with their family, friends, and physicians.

One option you can discuss with your doctor is hospice care in their home. Hospice doesn’t focus on curing disease and it’s not only for people with cancer.

Medicare’s hospice benefit covers your care, and you shouldn’t have to go outside of hospice to get care except in rare situations. Once you choose it, your hospice benefit should cover everything you need.

If you qualify for hospice care, you and your family will work with your hospice provider to set up a plan of care that meets your needs.

You and your family members are the most important part of your medical team. Your team can also include doctors, nurses or nurse practitioners, social workers, physical and occupational therapists, speech-language pathologists, hospice aides, homemakers, and volunteers.

A hospice nurse and doctor are on-call 24 hours a day, 7 days a week to give you and your family support and care when you need it. You can also include your regular doctor or a nurse practitioner on your medical team to supervise your care.

To find a hospice provider, talk to your doctor or call your state hospice organization. The National Hospice and Palliative Care Organization has a website that allows you to look up local providers based on your zip code, at

You can get hospice care if you have Medicare Part A (hospital insurance) and you meet these conditions:

  • Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill, with a life expectancy of 6 months or less;
  • You accept palliative care (for comfort) instead of care to cure your illness;
  • You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions.

You have the right to stop hospice at any time. If you do so, you’ll go back to the type of Medicare coverage you had before you chose a hospice provider.

Depending on your illness and related conditions, the plan of care your hospice team creates can include doctor and nursing services, medical equipment and supplies, prescription drugs, hospice aide and homemaker services, physical and occupational therapy, speech-language pathology services, social worker services, dietary counseling, grief and loss counseling for you and your family, short-term inpatient care for pain and symptom management, and more.

Information on Medicare’s hospice benefit, including costs:

Complete Article HERE!