Learning to Die

By MARGOT MIFFLIN

My mother taught me many things, including, in the end, how to die.

Her death went well, I told the few friends who I knew would understand my meaning: She was not in pain, she was conscious until the day before she died, she was at home, my sister and I were with her. It was a peak experience, revelatory and meaningful — something I wouldn’t have traded for anything — except her life.

No one tells you how discreetly death can make its catch, or how languorously. It rolls in like a low wave: It’s moving, and it’s not; she’s there, afloat, and she’s not; it simultaneously sluices through her and tugs her in its tide for hours, until she’s silently dispelled by its force.

I understand, now, why death has so often been personified in art — it’s maddeningly anonymous. Sylvia Plath’s Death is two people: the one who never looks up, and the one who smiles and smokes. But her suitors are too sexy and menacing to represent the remote, impassive, mundane death I witnessed. Jacques Brel’s Death is a spinster, a princess and a witch — all impossible: the experience of death could never be so monumentally solitary with this crowd of enablers on the sidelines.

My mother hallucinated lightly in the week before she died, and her morphine visions assured me that her death — or at least what followed it — would be O.K. “I wish I were a tree,” she said one day, which seemed reasonable in light of both her love of forests and the nature of her illness, multiple myeloma, which was whittling her bones away. She wanted to be solid again. She wanted to stand up and be rooted. A few days later she said brightly, “My father’s waiting for me.” She was ready to go.

On the night she died, five or 10 minutes after she stopped breathing, I held her in my arms and she was still there. An hour later, she was not. But she hadn’t been taken. I’m certain she had left, and seeing her go gave me the courage to think that I could do this myself, without fear.

I practiced in a dream. I was running along the rooftops of Lower Manhattan when I hit a sheer drop of 20 or 30 stories, and began to fall. I knew I would die, so I gave myself a quick admonition. First: Relax. It’s a long way down, and you could have a hell of an experience before this ends if you don’t tense up and miss it. Second: Stay horizontal so you get a clean hit and don’t make a huge mess. Third: On the ground, before you die, explain that this was an accident, not a suicide. People who love you deserve to know.

I hit the ground and found myself running again — scrambling around trying to get back to a building where I’d left a newly purchased book I was desperate to retrieve. I’d died and gone to — a bookstore. Life went on.

A month after her death, my mother was still dying. When I went to her apartment to sort her mail and pack up her things, she was there — a little less each week, but still. She walked in and flopped down on the full length of the couch with one outstretched hand brushing the floor, a Kleenex in her sleeve, surveying the vast empire of magazines on her coffee table. She appeared in my dreams, allowing me to hug her for a preposterously long time, though we both knew she was dead. This is how I held on to her for a few years — when I played it right. One night in a dream, for example, I spoke to her at length by phone, but when I asked her where she was, she sounded irritable and hedged, and the dream dissolved. So I learned not to ask.

And now, four years have passed. A gap has widened between what happened before her death and what’s happened since, and she’s slipped into it. They’re all gone now: the ghost mother, reclining on the couch; the missing person, dissembling on the phone; and the absent presence lingering in the woods where her scattered ashes have settled into the underbrush, buried under seasons of snow and wildflowers. And yet it feels as if I just met this radical new mother who did the unthinkable — the renegade who journeyed deep into the wilds of a terminal illness, shape-shifted magically before my eyes, and took off. It was an artless, innocent betrayal, based on a misunderstanding: I had simply thought she would live forever.

Complete Article HERE!

Deeply religious Jimmy Carter embraces cutting edge science in cancer battle

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Listening to the 90-year-old Jimmy Carter’s press conference last month concerning his battle with cancer, one might assume his pre-political career to have been in medicine, rather than nuclear physics for the U.S. Navy’s early nuclear submarine program. Not only did the former president explain his surgery in terms of the precise volume of liver tissue resected and the size of the four metastatic lesions in his brain shown on his MRI, but he also outlined the treatment plan.Former president Jimmy Carter

Importantly, in response to more than one question regarding whether, due to his religion beliefs, age, or other reasons, he ever considered something other than what his doctors — topic specialists in oncology, surgical oncology, and radiation oncology — were recommending, he replied with a resounding “no”. Despite talking frequently about his religious faith, despite teaching Bible classes to kids on Sundays in his hometown church, Carter will do what he can to prevent nature from running its malignant course. He will not sink into the gutter of alternative, faith-based medicine, but quite the contrary. He his put his fate in the hands of science. In his case, that means immunotherapy, which currently is showing promise for just a handful of cancerous conditions, but that includes the one he has, melanoma. It also radiation therapy, targeted very precisely to the four lesions in his brain.

What the treatment will mean for Carter’s prognosis is not something that can be answered with great precision, given the small amount of information that’s been released about his condition thus far. What is both public and improves his prospects is the fact that the four brain metastases are tiny, approximately 2 mm each, and the fact that it’s a cancer that responds to the immunotherapy drug that he’s getting. On the other hand is a concern that other metastases may yet turn up in other parts of his body. Either way, however, Jimmy Carter apparently plans to make his battle with cancer very public, and potentially this can do a lot for cancer awareness that ultimately can save many lives.

Carter’s diagnosis

In recent years, health-centered media have done a fairly good job at making people aware of malignant melanoma. For this reason, the public has a fairly accurate image of melanoma as a type of skin cancer, in fact the most deadly type. Many people are aware that a change in in a mole or the appearance of a new, dark mark on the skin is not something to ignore, but something to have examined by a dermatologist and biopsied. But what’s not well known is that approximately 2 percent of melanomas begin deep inside the body, not in the skin. These internal melanomas come from melanocytes, the same types of cells that cause cutaneous melanoma. But, unlike cutaneous melanoma on Sun-exposed areas, you cannot prevent internal melanomas by controlling your Sun exposure, nor can you see them in an early stage with your own eyes.

In President Carter’s case, the only reason why doctors found his melanoma, initially in the liver, is that he had an abdominal magnetic resonance imaging (MRI) scan as part of a comprehensive exam after developing a very bad cold. After approximately 10 percent of his liver was resected biopsied, it was confirmed that the liver lesion was cancer, and specifically it was melanoma. However, the testing also showed that it had been removed with clear margins of healthy tissue around it, meaning that the rest of the organ was in good shape.

In a certain sense, the melanoma diagnosis after surgery was a relief for Carter, because initial presentation had looked as though it could have been pancreatic cancer, which runs in Carter’s family. His father, two sisters, and brother all died from it, and the liver is commonly a presentation site, even though it starts in the pancreas. But Carter’s doctors had a high level of suspicion that the melanoma had not started in the liver, that the liver lesion was a metastasis from another site. Consequently, they ordered more MRI scanning. This revealed the four spots in his brain and it’s the reason why some media outlets have referred to Carter’s condition rather inaccurately as “brain cancer”.

Different types of cancer affect the brain

What President Carter has is not “brain cancer”. It’s metastasis to the brain from somewhere else. Metastasis by cancers starting somewhere else actually is the most common kind of cancer to have in the brain. However, it’s important to distinguish brain metastasis from malignant tumors that arise in the brain itself. One category of primary brain malignancies is glioblastoma, which kills approximately 15,000 adults in the US each year and is the brain malignancy that Vice President Biden’s son, the late Beau Biden, may have had, based on reasonable speculation by the Washington Post.

It’s particularly important to raise awareness about brain malignancy and where state-of-the art medicine is at present, in light of a scientifically illiterate and extremely paranoid accusation made last June by writer Mike Adams of the pseudoscience publication Natural News. After outlining his opinion that the younger Biden was “killed by a combination of chemotherapy, radiation, and glyphosate”, Adams went on to slam the field of oncology with a string of accusations and insults:

Oncologists who prescribe chemotherapy drugs earn massive profits from those drugs, all while failing to disclose their own conflicts of interest to their patients. Unfortunately, chemotherapy kills far more people than it saves because its primary side effect is recurring cancer. Yes, chemotherapy causes cancer. And the ignorant oncologists who prescribe it actively encourage patients to avoid protecting their healthy cells with nutritional therapies such as medicinal mushrooms, anti-cancer foods and healthy oils such as cod liver oil. In fact, oncology as practiced today is a barbaric medical practice that quite literally kills people by the hundreds of thousands each year…Beau, it seems, was handed over to the conventional cancer industry which, sadly, told him he had a “clean bill of health” just 18 months before the cancer surged back… almost certainly worsened by the chemotherapy itself.

After attributing Beau Biden’s death to chemotherapy, Adams goes on to blame the herbicide glyphosate (an analog of the amino acid glycine) — and indirectly Hillary Clinton and others who support biotechnology companies — for Biden’s developing the malignancy in the first place. The possibility of a glyphosate-cancer connection has been addressed, and shown to be highly speculative, on the Genetic Literacy Project and other news outlets, but here we can address Adams’ alarmist assertions regarding conventional oncology treatments, and chemotherapy in particular.

Chemotherapy saves lives

There are two things that Adams got right, although he wrote about them so far out of context that they can do nothing but mislead the readers. First of all, people do receive chemotherapy and then die, and often this happens after they initially start to get better after following a cancer diagnosis; they go into what is called remission, but often the remission does not turn into a cure. That happens because many types of cancer respond well at first to certain cancer drugs, and then more resistant cancer cells take over.

What Adams didn’t say is that with many types of cancer, today the incidence of the cancer coming back after initial remission is reduced compared with a half century ago, because of increasing understanding of how the chemotherapy drugs work, increased capabilities of new chemotherapy drugs, and because of the development of systematic protocols for using particular chemotherapeutic “cocktails” of different agents. Adams also didn’t say that reason why patients die when cancer comes back after a remission is not that chemotherapy causes new cancer. He implied that in his article, but it’s completely false. What comes back is the same cancer that the patient had before.

The second thing that Adams got right is that many chemotherapy drugs can themselves cause cancer. As explained above, it’s not the same cancer that comes back within weeks or months in cases when chemotherapy doesn’t get rid of a cancer. Instead, the correct but out-of-context fact is that there are cancer drugs that can cause secondary malignancies decades later. This is particularly true of a category of anti-cancer drugs called alkylating agents. This is a huge issue in oncology, particularly in cases of people who are treated with those drugs for childhood cancers, who are then at elevated risk for other cancers decades later.

But what Adams did not say–what makes it extremely out of context–is the reason why we know about secondary malignancies caused by certain chemotherapy agents. We know about it because there is an increasing number of survivors of childhood, teenage, and young adult cancers who are walking around today and sometimes developing cancer 20, 30, or 40 years after chemotherapy, radiation, and surgery cured them of the cancer they had in their youth, that otherwise would have killed them.

In the 1940s and 50s, cancers, such as acute lymphoblastic leukemia (ALL) in children and Hodgkin lymphoma in teenagers and young adults, were nearly complete death sentences. But today, most of the kids diagnosed with these two conditions survive, and they survive because of chemotherapy. How did this happen? By the 1960s, oncologists had just a handful of chemotherapeutic agents. Sometimes, they worked a little for certain cancers. People got better, or went into remission for a little while, and a small fraction were actually cured. Overall, the cure rate was dismal, but then researchers started noticing that the cure rates varied a great deal from medical center to medical center. Different oncology teams were using and dosing the different drugs in slightly different ways. Some were combining more than one drug but the combinations also varied between institution.

Thus, in the 1960s and 70s, oncologists and scientists started having cancer teams report what their cases and treatments very systematically, and they started looking at the outcomes of different drugs, alone and in combination with other drugs, for different types of cancers.

What grew out of this approach was a knowledge base founded on the collective experience of oncologists around the world. This led to very particular protocols for combined chemotherapy cocktails for specific types of cancer. As the various cocktails were being developed, various new drugs were also introduced to mitigate the side effects, thereby allowing for more aggressive doses. Depending on the type of cancer, and the locations within the body, the chemotherapy protocols are also combined with radiation therapy and surgery, along with other types of drugs.

All of this together has given oncologists the ability to kill off cancer to the point that it does not come back, because any cell that happens to be resistant to one agent is killed by another agent, or by the radiation, or, if the tumor mass gets low enough, by the patient’ own immune system. Thus, while chemotherapy armaments today do include many old drugs used unsuccessfully 70 years ago, they way they are used today is very different, and for a bunch of cancers the rate of survival has increased significantly. At the same time, radiation oncology has also gone through major advances. Not only is the power of radiation that can be delivered to a tumor gone up steadily, but the targeting has gotten better, due to precise imaging with technologies such as MRI and computed tomography (CT) and nuclear medicine techniques. Also, the shielding has improved, which makes a huge difference, allowing delivery of powerful radiation only where it is needed while sparing healthy tissues.

Importantly, one of the main factors affecting survival is matching the precise staging of the cancer (where and to what extent is has spread in the body) to the appropriate treatment. Today, the staging is more precise that it used to be, because of improved diagnostic capability, and that is improving survival as well.

President Carter’s Treatment Plan

Based on what information is available, President Carter is now receiving radiation to the four metastases in his brain. There is a very good chance that all four lesions will be eliminated from his brain with minimal side effects, because of the small size of the lesions, the precise targeting, the high tech shielding, and because of one other reason: special agents can be given that will make the brain metastases more sensitive to radiation. Carter is also getting treatment with pembrolizumab, which is being called abreakthrough drug. It works by boosting the immune system, and therefore is part of an emerging type of therapy known as immunotherapy. Currently, immunotherapy has limited use for cancer across the board, but melanoma is one type of cancer where immunotherapy is showing particular promise.

Complete Article HERE!

Burial, cremation, or full fathom five? I can see the allure of a watery grave

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Eighty-five-year-old twins from Brooklyn are setting off on what they say will be their final voyage. Their plan to die at sea has an undeniable romance

Sunset over the sea
‘The sea is where we came from in the first place. There’s a definite romance to saying goodbye to the land, and setting sail for that last adventure.

The endlessness of the sea offers an eternal alternative. Perhaps if we just pushed off into it, we could escape death itself – as if its amniotic waters might be a return to a universal womb. After all, the sea is where we came from in the first place. There’s a definite romance to saying goodbye to the land, and setting sail for that last adventure.

Van and Carl Vollmer, 85-year-old twins from Brooklyn, certainly think so. The brothers are about to embark on the handsome 158ft, three-masted barquentine, the Peacemaker, on a round-the-world voyage in search of remote islands and sunken galleons, from the Panama Canal to the Great Barrier Reef, the Philippines, and on to the Mediterranean.

In order to get there, the pair – who currently live on a powerboat moored on City Island – have bill-posted Brooklyn’s hipster district of Williamsburg with an enticing proposition: “Brooklyn sea captain seeking crew!” They’re advertising for a 12-strong, able-bodied crew of men and women, including a mechanic, deckhand, cook, nutritionist and an aquaponic gardener to grow vegetables on top of fish tanks – a kind of hip 21st-century version of Ahab’s crew on the Pequod in Herman Melville’s Moby-Dick. They’ll even get suitably retro uniforms of old-fashioned sailor pants with 13 buttons and yellow-and-white striped shirts. I’m guessing they’ll all have beards already.

But instead of a demented captain suicidally spearing a great white whale, the Vollmer twins are instructing their shipmates that when the time comes, they’ll be glad to go over the side. “To swim with the fishes for eternity”, as Van Vollmer says. “We want to spend the rest of our lives on this boat”, Carl adds. “We want to get thrown overboard”. Melville, who lived and died by the New York waterfront, would approve of such wild ambition. Having ended his own life as an ageing customs inspector on the Manhattan wharves looking out longingly to sea, the great writer probably wished he had done the same. Indeed, it’s a scene reminiscent of his last, elegiac seafaring tale, Billy Budd, whose protagonist ends up consigned to the deep: “…roll me over fair! / I am sleepy, and the oozy weeds about me twist.”

But not everyone is happy about the Vollmers’ intentions. At least one crew member, Steven, chosen by the twins as their first mate, is equivocal about this duty. “Van kind of brings it up and he’s like, ‘I want to teach you everything I know so when you dump me into the sea you can take over.’ I’m hoping that’s just some kind of expression. It’s not something I really want to think about.”

Not going gently into the good night but raging against the dying of the light, as Dylan Thomas recommended, has a long maritime tradition. It is an ambition peculiarly suited to the sea – particularly in our fractured archipelago of the British Isles. In Charles Dickens’s David Copperfield, Mr Peggotty, the Yarmouth fisherman, says of his brother-in-law Mr Barkis as he lies dying: “People can’t die, along the coast … except when the tide’s pretty nigh out … He’s going out with the tide. It’s ebb at half-arter three, slack water half-an-hour. If he lives till it turns, he’ll hold his own till past the flood, and go out with the next tide.” Nowadays, anyone hoping to swim with the fishes in eternity without going to the bother of sailing into the blue yonder can opt for burial at sea off the Isle of Wight, in a designated zone.

Meanwhile, the modern Odysseus takes to the ocean liner. Wealthy wanderers of a certain age have sold up on land to live at sea in permanently rented suites. A somewhat ominous-sounding company called Utopia caters to those who intend to spend the rest of their lives on the briny, while US websites discuss the practicalities, pondering, “Is cruise ship retirement cheaper than assisted living?”.

Beatrice Muller thought so. After her husband died on the QE2 as it sailed out of Bombay in 1999, she announced her intention to live on the liner till the end of her days, paying £3,500 a month for the privilege. Unfortunately for Mrs Muller, she outlasted the ship; it went into retirement in 2008. And although the stalwart senior citizen continued to defy the land – “I’ll keep on staying at sea”, she said, aged 89, “I don’t want to go back to housekeeping” – sadly, she seems to have ended up in a retirement home in New Jersey.

As someone who swims in the sea every day, I’ve often considered it as my last resting place; that like Barkis, I might be taken out with the tide. After all, I wouldn’t be using up valuable land space, or contributing to climate change. It sounds almost idyllic. “Full fathom five my father lies”, as Ariel sings in The Tempest, “Of his bones are coral made”, transformed “into something rich and strange”. But then I think of how lonely it might be, nibbled away by crawling slimy things where “the very deep did rot”, as the fated Ancient Mariner saw it. And would I really want to be recycled by lobsters, to end up in the food chain? Perhaps it’s not such a reassuring thought after all.

Complete Article HERE!

Therapy Dog Gently Comforts Hospice Patient While They Both Listen To Poetry

hospice dog 3

 

By Regina Lizik

JJ the dog has a very special job. She’s a therapy dog who spends a lot of her time comforting patients at a hospice in Oregon. Recently, JJ’s mom, nurse Tracy Calhoun, posted a video one of JJ’s therapy sessions to Facebook.

It shows JJ comforting a patient who, sadly, does not receive many visitors. Her time with the pup is very precious. In the video, they spend their time sharing snuggles and listening to a poem by W.B. Yeats.

JJ’s mom translated the pup’s dog thoughts on Facebook:

“She cannot see and often does not wake up, but she did like having her hand on my fur. She was very calm during my visit. We were listening to Yeats, by the way. I was very insistent to have her touch me, more so than usual. We fell asleep later with her hand splayed on my head, both of us snoring.”

You can follow JJ’s amazing work on her Facebook page.

Complete Article HERE!

After surviving the Holocaust, letting go of life is complex

By Melissa Apter

A Holocaust survivor looks at a candle commemorating the liberation of Auschwitz Birkenau, January 27, 2015, in Ayr, Scotland. (Jeff J. Mitchell/Getty Images)
A Holocaust survivor looks at a candle commemorating the liberation of Auschwitz Birkenau, January 27, 2015, in Ayr, Scotland.

Jewish hospice chaplains confront the emotional and medical complexities of death and dying every day, but Holocaust survivors present special challenges.

Rabbi E.B. “Bunny” Freedman, director of the Jewish Hospice and Chaplaincy Network, said that chaplains are increasingly being called on to provide spiritual support to survivors and their families.

“There are a lot of complex issues,” said Freedman, who has worked in end of life chaplaincy for 23 years. “One of them is making the decision of unhooking hydration – much more complex for a Holocaust family. The idea of not providing nutrition is crossing a sacred or not understood emotional line.”

Survivor guilt and mixed feelings at the prospect that they may “meet their relatives on the other side” commonly surface, he said.

Rabbi Charles Rudansky, director of Jewish clinical services at Metropolitan Jewish Health System’s hospice in New York, reported similar experiences with Holocaust survivors he had counseled.

“Last time they saw their loved ones was hellish, hellish, hellish, and now they’re crossing that bridge,” said Rudansky.

Some Holocaust survivors are apprehensive at that prospect, he said, while others are “uplifted.” A usually talkative person may fall silent, while a quiet person may suddenly have a lot to say.

“I’ve been called in by Holocaust survivors who only want to speak with me so some human ears will have heard their plight,” said Freedman.

Jan Kellough, a counselor with Sivitz Jewish Hospice and Palliative Care in Pittsburgh, said she encourages, but never pushes, survivors to share their stories. While it can be therapeutic for some survivors to talk about the Holocaust, she said, it is problematic for others.

Rabbi Freedman giving a presentation to hospice workers in Baltimore, Maryland, spring 2015. (Courtesy: Dr. Gary Applebaum)
Rabbi Freedman giving a presentation to hospice workers in Baltimore, Maryland, spring 2015.

For some survivors, “there’s an attitude of not wanting to give up, there’s a strong will to fight and survive,” said Kellough.

Children and grandchildren of survivors can also struggle to cope with their loved ones’ terminal illness, said Rudansky.

He said such people tell the hospice staff, “’My grandfather, my father survived Auschwitz. You can’t tell me they can’t survive this!’ They have great difficulty in wrapping their heads around this is different — this is nature.”

That difficulty can be compounded by the fact that children of survivors may not have had much contact with death in their lives, said Rabbi David Rose, a hospice chaplain with the Jewish Social Service Agency in Rockville, Maryland.

Because so many of their family members were wiped out in the Holocaust, children of survivors may be less likely to have experienced the death of a grandparent or aunt or uncle.

“That’s one of the benefits of hospice. We work with them and their families to help them accept their diagnosis,” said Kellough.

Hospice offers families pre-bereavement counseling, 13-months of aftercare and access to preferred clergy.

Special sensitivity is paid to spouses who are also survivors.

“Survivor couples, particularly if they met before the war or just after the war are generally exceptionally protective of each other,” said Rose. “A few different couples come to mind – every time I visited, the partner was sitting right next to their spouse, holding hands the whole visit.”

Freedman underscored that chaplains are trained not to impose their religious ideas on families, but rather to listen to the patient and family’s wishes.

“I tell the people I train that if you’re doing more [than] 30 percent [of the] talking in the early stages of the relationship, then you’re doing it wrong,” said Freedman.

“Seventy percent of communication is coming from your ears, your eyes, your smile — not your talking. Rabbis tend to be loquacious, we’re talkative,” he said. “But when I’m with a family, I am an open book for them to write on.”

Though the work is emotionally demanding, Freedman said, “Helping people through natural death and dying is one of the most rewarding things people can do.”

 
Complete Article HERE!

If You Have Dementia, Can You Hasten Death As You Wished?

By Robin Marantz Henig

If you make a choice to hasten your own death, it’s actually pretty simple: don’t eat or drink for a week. But if you have Alzheimer’s disease, acting on even that straightforward choice can become ethically and legally fraught.

Dementia

But choosing an end game is all but impossible if you’re headed toward dementia and you wait too long. Say you issue instructions, while still competent, to stop eating and drinking when you reach the point beyond which you wouldn’t want to live. Once you reach that point — when you can’t recognize your children, say, or when you need diapers, or can’t feed yourself, or whatever your own personal definition of intolerable might be — it might already be too late; you are no longer on your own.

If you’re to stop eating and drinking, you can do so only if other people step in, either by actively withholding food from you or by reminding you that while you might feel hungry or thirsty, you had once resolved that you wouldn’t want to keep living like this anymore.

And once other people are involved, it can get tricky. Caregivers might think of spoon-feeding as just basic personal care, and they might resist if they’re asked to stop doing it — especially if the patient indicates hunger somehow, like by opening her mouth when she’s fed.

Conflicts between caregivers and the patient’s previously stated wishes can end up in court, as with the case of Margaret Bentley, which goes before the Court of Appeals in British Columbia on Wednesday.

Bentley, a former registered nurse, decided years ago that she wanted to stop eating if she ever became completely disabled. But she has now sunk so far into dementia that she needs other people to help her carry out her own wishes. And while her family wants her to be allowed to die, the administrators of her nursing home do not.

Back in 1991, Bentley wrote and signed a living will that said that if she were to suffer “extreme mental or physical disability” with no expectation of recovery, she wanted no heroic measures or resuscitation, nor did she want to be fed “nourishment or liquids,” even if that meant she would die.

Eight years later, at the age of 68, Bentley was diagnosed with Alzheimer’s disease. She lived at home with her husband John, as well as a live-in caregiver, until 2004, when she needed to be institutionalized.

For a while, according to her daughter, Katherine Hammond, the family hoped she would just die peacefully in her sleep. But as the years dragged on and Bentley got progressively more demented, her husband and daughter finally decided to put her living will into action.

By this time it was 2011, and Bentley was living at a second nursing home, Maplewood House, in Abbottsford, about an hour east of Vancouver. Aides had to do everything for her, including diapering, moving, lifting and feeding her. So the decision to stop giving her food and water involved the aides as well as the Fraser Health Authority, which administers Maplewood House.

Someone — Hammond is not sure exactly who — resisted the idea of denying Bentley the pureed food and gelatin-thickened liquids that were her standard diet, especially because she seemed to want to eat, opening her mouth whenever they brought a spoon to her lips.

That’s just a reflex, insisted Hammond, who made a short video showing that Bentley opened her mouth even when the spoon was empty. “There she goes again,” the daughter says on the video.

In early 2013, a Superior Court judge ruled that it was more than a reflex, it was an expression of Bentley’s desire to be fed; he granted the nursing home permission to continue to spoon-feed her. Bentley’s family appealed, resulting in Wednesday’s court hearing.

Death brought about by the cessation of eating and drinking might sound scary in prospect, but it’s said to be relatively painless if done correctly. Most of the discomfort associated with it, according to a pamphlet issued by the advocacy group Compassion & Choices, comes from trying to do it in increments. Even a tiny amount of food or water “triggers cramps as the body craves more fuel,” the group writes. “Eliminating all food and fluid actually prevents this from happening.”

They recommend lip balm and oral spray if the mouth gets dry, rather than sips of water that can introduce just enough fluid into the system to make the process harder. And they counsel patience. It takes about six days, on average, for someone who stops eating and drinking to slip into a coma, and anywhere from one to three weeks to die.

Scholars have been tangling for years with the moral quandary of how to treat people like Margaret Bentley, who indicate, while cognitively intact, that they want to kill themselves when they reach the final stages of dementia. (NPR earlier covered the story of Sandy Bem, a woman with Alzheimer’s who took matters into her own hands before that final stage.)

In a recent issue of the Hastings Center Report, a prominent journal of bioethics, experts were asked to consider the story of the fictitious Mrs. F., a 75-year-old with advanced Alzheimer’s living at home with her husband and a rotating cast of caregivers. Early in the disease process, Mrs. F. had been “adamant” about not wanting to end up profoundly demented and dependent. She told her husband that when she could no longer recognize him or their two children, she wanted to stop all food and fluid until she died.

Mrs. F.’s cognitive function “was beginning to wax and wane,” according to the description in the journal, when she finally decided it was time to stop eating. But occasionally she would forget her resolve — she was, after all, suffering from a disease characterized by profound memory loss — and would ask for food. When she did, her family reminded her of her previous decision.

But they were torn, as were the aides caring for her. Which Mrs. F. should they listen to: the one from before, who above all else did not want to become a mindless patient in a nursing home? Or the one from right now, who was hungry?

That’s the problem, really; part of what happens in a dementing illness is that the essential nature of the individual shifts.

“Mrs. F.’s husband was, to all appearances, acting out of goodwill in an attempt to honor his wife’s previously expressed wishes,” noted Timothy W. Kirk, an assistant professor of philosophy at the City University of New York, in his commentary on the case. “Doing so in a manner that conflicted with her current wishes, however, was a distortion of respecting her autonomy.” Kirk’s bottom line: If this Mrs. F., the one with the new, simpler identity, asks for food, she should get it.

As hard as it is to resolve moral quandaries like these, one thing is clear: they’ll be raised again and again, as the population ages and cases of late-life dementia soar.
Complete Article HERE!