01/9/18

This Was Not the Good Death We Were Promised

Share

When my father was dying of pancreatic cancer last summer, I often curled up with him in the adjustable hospital bed set up in his bedroom. As we watched episodes of “The Great British Baking Show,” I’d think about all the things I couldn’t promise him.

I couldn’t promise that the book he’d been working on would ever be published. I couldn’t promise he would get to see his childhood friends from England one more time. I couldn’t even promise he’d find out who won the baking show that season.

But what I could promise — or I thought I could — was that he would not be in pain at the end of his life.

That’s because after hearing for years about the unnecessary medicalization of most hospital deaths, I had called an in-home hospice agency to usher him “off this mortal coil,” as my literary father still liked to say at 83.

When a doctor said my father had about six months to live, I invited a hospice representative to my parents’ kitchen table. She went over their Medicare-funded services, including weekly check-ins from a nurse and 24/7 emergency oversight by a doctor. Most comfortingly, she told us if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.

For several months, things went well. His primary nurse, who doubled as case worker, was kind and empathetic. A caretaker came three mornings a week to wash him and make breakfast. A physician assistant prescribed drugs for pain and constipation. His pain was not terrible, so a low dose of oxycodone — the only painkiller they gave us — seemed to suffice.

In those last precious weeks at home, we had tender conversations, looked over photographs from his childhood, talked about his grandchildren’s future.

But at the very end, confronted by a sudden deterioration in my father’s condition, hospice did not fulfill its promise to my family — not for lack of good intentions but for lack of staff and foresight.

At 7 p.m. on the night before my father’s last day of life, his abdominal pain spiked. Since his nurse turned off her phone at 5, I called the hospice switchboard. To my surprise, no doctor was available, and it took the receptionist an hour to reach a nurse by phone. She told us we should double his dose of oxycodone, but that made no difference. We needed a house call.

The only on-call nurse was helping another family two hours away. So my sister and I experimented with Ativan and more oxycodone, then fumbled through administering a dose of morphine that my mother found in a cabinet, left over from a past hospital visit. That was lucky, because when the nurse arrived at midnight, she brought no painkillers.

After the nurse left, my father’s pain broke through the morphine. I called the switchboard again, and it took three hours for a new nurse to come. She was surprised he hadn’t been set up with a pump for a more effective painkiller. She agreed that this constituted a crisis and should trigger the promised round-the-clock care. She made a phone call and told us the crisis nurse would arrive by 8 a.m.

The nurse did not come at 8 a.m. Or 9 a.m. When his case worker was back on duty, she told us — apologetically — that the nurse on that shift had come down with strep throat. Her supervisor stopped by, showed us the proper way to deliver morphine (we’d been doing it wrong) and told us a pain pump and a crisis nurse should arrive by noon.

Noon passed, then 1 p.m., 2 p.m. No nurse, no pump.

By this time, my father had slipped into a coma without our noticing; we were thankful his pain was over but heartbroken he wouldn’t hear our goodbyes. Finally, at 4 p.m., the nurse arrived — a kind, energetic woman from Poland. But there was little left to do. My father died an hour later.

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.

I didn’t realize how common our experience was until a few months after his death, when two reports on home hospice came out — one from Politico and one from Kaiser Health News. According to their investigations, the hospice system, which began idealistically in the 1970s, is stretched thin and falling short of its original mission.

Many of the more than 4,000 Medicare-certified hospice agencies in the United States exist within larger health care or corporate systems, which are often under pressure to keep profit margins up.

Kaiser Health News discovered there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80 percent of people reported “getting timely care” from hospice providers, and only 75 percent reported “getting help for symptoms.”

I called Edo Banach, the president of the National Hospice and Palliative Care Organization, to get the trade group’s response. He expressed sympathy for my father’s suffering but was adamant that good hospice experiences “far outweigh” the negative ones.

Granted, more than a million Medicare patients go into hospice care every year, so the complaints are in the minority. Mr. Banach told me he’s worried that drawing attention to what he called the “salacious” stories of failed hospice care means more families will turn to less holistic, less humane end-of-life care. That could be true. But then, should there be more transparency early on? Should the hospice reps explain that in most cases, someone will rush to your loved one’s side in a crisis, but sometimes the agency just doesn’t get the timing and the logistics right?

As the number of for-profit hospice providers grows, does that model provide too great an incentive to understaff nighttime and weekend shifts? The solution may have to come from consumer advocacy and better regulation from Medicare itself.

A new government-sponsored website called Hospice Compare will soon include ratings of different agencies, which will ideally inspire some to raise their game. When I looked up the agency we had used, its customer satisfaction rate for handling pain — based on the company’s self-assessment — was 56 percent.

I considered making a complaint in the days after my dad’s death, but frankly we were just too sad. Even now, I believe hospice is a better option than a sterile hospital death under the impersonal watch of shift nurses we’d only just met. But I wonder whether that hospital oversight might have eased my father’s pain earlier on that last day.

Ultimately, even without pain relief, he was probably more comfortable in his own home, tended by his children, doing our best.

But then I think: He deserved to have both.

Complete Article HERE!

Share
01/8/18

Assisted dying in religious facilities means tough choices for families

Share

Barry Hyman always swore he’d die peacefully on his own terms. But living in a faith-based nursing home put his family in a difficult position to help him

Lola Hyman and her son Jackson look over photographs of Lola’s father Barry Hyman at their home in Vancouver.

By

On the night that 83-year-old Barry Hyman was to receive a doctor-assisted death, his daughters were on edge, petrified that at any moment someone would burst through the door and stop them from granting their father his final wish.

Enfeebled by a stroke and diagnosed with lung cancer, Mr. Hyman had asked to die at home.

But his home at the time was a publicly funded Jewish nursing home in Vancouver whose board forbade assisted deaths on site, saying the newly legal practice violated the values and traditions of the Jewish faith.

That left Lola Hyman, the younger of Mr. Hyman’s two daughters and his main caregiver, with a choice.

She could transfer her father to an unfamiliar clinic to die, or she could sneak Ellen Wiebe, one of the country’s leading doctor-advocates of assisted dying, into her father’s room to help him die in his own bed.

Lola and the rest of her immediate family settled on the latter. They would deal with the fallout later.

Their first priority was making sure that Mr. Hyman died peacefully on his own terms, as he’d always sworn he would.

“The room was very quiet. We just held his hand and stared at him,” Lola said. “My sister was sobbing, just sobbing. I was a stone. A complete stone. My heart was racing that someone would open the door.”

nstead of focusing on their goodbyes, the Hyman family spent the last moments of Barry’s life worrying that they would be discovered and prevented from completing a legal medical procedure inside a publicly funded care facility.

Their story is an extreme example of the choices that grievously ill Canadians still face – 18 months after Ottawa’s assisted-dying law took effect – if they wind up near the end of their lives in a hospital or nursing home that refuses to allow assisted dying, either for religious reasons, or because the facility has simply decided to say no.

It is not clear if these institutions enjoy the same Charter-protected religious freedoms as individuals when it comes to refusing assisted deaths because the issue has not yet been tested in court.

In the vast majority of cases, such patients are transferred to another facility to die. But it isn’t always easy to find a place to send them.

Sometimes overcrowded secular hospitals say no. Sometimes the only hospital or nursing home in town is faith-based.

Other times, an unconventional location has to suffice: In Vancouver, Dr. Wiebe has opened her women’s health clinic after-hours for 34 assisted deaths, which means that in some cases, Catholic health-care facilities have transferred patients to an abortion clinic to die.

Canada’s religious health-care organizations, which have been tending to the sick in this country since long before Medicare, say they are doing their best to support terminally ill patients without betraying their own faith, offering options like palliative sedation to make patients’ natural deaths as painless as possible.

Some have softened their objections to the early parts of the medical-aid-in-dying process, allowing outside doctors to come in and conduct eligibility assessments on patients who are too fragile to be transferred for an appointment.

But when it comes to actual physician-assisted deaths, religious facilities – be they Jewish, Baptist, Catholic or otherwise – are refusing to allow the practice on their grounds.

“The core issue … is that Catholic and faith-based organizations are committed to the inherent dignity of every human life and would never intentionally hasten the end of a life,” said Christopher De Bono, vice-president of mission, ethics, spirituality and indigenous wellness at Providence Health Care, a Catholic health-care network that includes St. Paul’s Hospital in downtown Vancouver.

Nobody on either side of Canada’s assisted-dying divide is arguing that individual doctors or nurses should have to participate in assisted dying if they object to it, said Shanaaz Gokool, the chief executive officer of the advocacy group Dying with Dignity Canada.

But she is incensed that every province with faith-based health-care organizations except Quebec has allowed taxpayer-funded hospitals and nursing homes to refuse requests for a procedure the Supreme Court of Canada has declared a Charter-protected right. (And even Quebec allows some hospices to opt out.)

“Why are we making this so hard for people when it’s the one medical treatment that you have a legal right to in this country?” she said.

Throughout Barry Hyman’s long and colourful life – through founding a small publishing company, raising two daughters, divorcing twice, studying history and English literature at Simon Fraser University as a senior citizen and logging countless hours at casino poker tables – he told anyone who would listen that he had no desire to linger if his health failed.

“Ever since I can remember, and I mean over 50 years, my father has always told me that if he ever got to the point that he no longer had the ability to comprehend, the ability to socialize, the ability to do the things that he wanted to do … he was done,” said Leah Hyman, 54, Mr. Hyman’s eldest daughter.

Mr. Hyman, a Winnipeg-born businessman, dreaded one day losing the vitality that infused his life, first as a young waiter on the railroad, then as the founder of an Edmonton printing company that churned out small Jewish newspapers and government directories.

He also owned pool halls, nightclubs and a roller rink. He was still on J-date, the online Jewish matchmaking service, in his 80s.

“He just rolled up his sleeves and dove into everything,” Lola said – including introducing his only grandson, Jackson Doyle-Hyman, now 19, to the worlds of business and (responsible) gambling.

Mr. Hyman once took a kindergarten-aged Jackson to the track and showed him how to bet $10 at a time on the top horses.

Lola, now 51, later found cash spilling out of the pockets of Jackson’s little navy polo jacket.

As he grew older, Jackson often tagged along to business meetings where ad space was traded for car parts or hotel stays, a practice called “contra.”

Barry Hyman holds his grandson, Jackson, in 1998.

“We always joked that he could have built a Ferrari with all the car parts he got contra for,” Jackson said.

Mr. Hyman was already a diabetic with congestive heart failure when he was diagnosed with lung cancer early in 2016.

But his health didn’t really begin to deteriorate until an ill-fated trip to a tanning salon to treat his psoriasis.

The tanning bed left Mr. Hyman with a burn on his left foot no bigger than a quarter. The wound festered for nearly a year, despite every effort to heal it.

By October of 2016, doctors were talking about amputating his leg. Mr. Hyman instead chose to undergo a procedure in which surgeons bypassed a clogged leg artery that was keeping his foot from healing.

Ten days later he had a stroke, a known risk of the operation.

His mind was still sharp, but the stroke impaired his speech – a devastating blow for a man who adored the English language and insisted upon its correct use.

“This was a guy who read two papers a day and did the New York Times crossword,” Lola said, “And he no longer could do any of that.”

It was clear to Lola that her father could not keep living in his own apartment, as he had before the stroke.

The family’s first choice was the Louis Brier Home and Hospital, Vancouver’s only Jewish nursing home. But it was full.

Mr. Hyman during a portaging trip through the Northwest Territories in 1985.

Reluctantly, Mr. Hyman accepted a spot at St. Vincent’s: Brock Fahrni, a Catholic home where he shared a room with three other men.

Mr. Hyman and his family made a preliminary inquiry about assisted death with a doctor there, but it went nowhere.

When, in April of 2017, a bed in a private room became available at the Louis Brier Home, Lola leaped at the chance.

She knew that, like the Catholic home her father would be leaving, the Louis Brier did not permit assisted deaths on site.

She hoped that moving her father to a nicer place where he could live among his Jewish peers and Jewish culture would persuade him to abandon his talk of assisted death.

But Mr. Hyman wouldn’t let go of the idea. Although Lola didn’t want to lose her father, she was willing to help him fulfill his final wish.

On April 26, a week after moving to the Louis Brier, Mr. Hyman and Lola met Dr. Wiebe at her office.

A few hours later, Dr. Wiebe e-mailed Lola to say her father’s constellation of health problems made him eligible for an assisted death.

Dr. Ellen Wiebe sits in the room where she helps those wanting medically assisted deaths at the Willow Women’s Clinic in Vancouver.

When the Supreme Court of Canada struck down the Criminal Code prohibition on physician-assisted dying in February of 2015, the judgment made it clear that invalidating the law would not compel doctors to help their patients die.

The court was silent, however, on whether entire health-care organizations could bow out of medical aid in dying.

Parliament passed a law that was silent on the question, too, even though a special joint committee of the House and Senate had recommended that Ottawa work with the provinces to ensure all publicly funded health-care facilities provide medical assistance in dying.

Jay Aubrey, a lawyer with the British Columbia Civil Liberties Association, the group that helped topple the ban on assisted dying, predicted that a legal challenge against an objecting religious health-care facility such as the Louis Brier Home would be straightforward.

The home is 67-per-cent publicly funded and is therefore “acting in the shoes of government,” she said. “That’s why they’re bound by the Constitution.”

Ms. Aubrey sent a letter to the Louis Brier Home last May making that case on Mr. Hyman’s behalf.

But Richard Moon, a University of Windsor law professor and an expert in religious-freedom cases, said past precedents suggest public funding alone is not enough to saddle a third-party like a nursing-home operator with the constitutional duties of a government.

On the contrary, he said, religious health-care organizations could try – and might succeed, under the right circumstances – to claim they are entitled to the same Charter-protected religious freedoms as individuals, allowing them to rebuff government orders that breach their beliefs.

Prof. Moon said there could be a simple way around that: Provincial governments could withhold funding from health-care organizations that do not allow assisted dying, so long as they applied the rule without discrimination.

“It’s a matter of nerve here, isn’t it?” he said. “Is the government really willing to withdraw funding from these organizations? Are these organizations really willing to risk the loss of funding?”

So far, everywhere outside Quebec, the answer is no.

Grievously ill patients are instead being transferred out of non-participating institutions in numbers that are difficult to determine at a national level.

British Columbia’s five regional health authorities together logged a total of 61 transfers as of the beginning of December. Alberta has recorded 42; Saskatchewan is aware of at least 11; Manitoba has recorded eight.

The Maritime provinces say they are either not aware of any such transfers or are not tracking them.

The outlier is Ontario. Not only has Kathleen Wynne’s government declined to track transfers, it passed a law exempting hospitals, nursing homes and hospices from freedom-of-information requests about medical aid in dying, a move the province’s privacy commissioner denounced.

The blackout, which a spokesman for Ontario’s Ministry of Health and Long-Term Care said was enacted to protect health-care workers and institutions that provide assisted dying, makes it impossible to say how many hospitals in Canada’s most populous province are refusing to allow the practice.

But ministry officials have hazarded a guess: As many as 27 publicly funded Ontario hospitals – one out of every five in the province – would “potentially object to [medical aid in dying] based on their stated religious/ideological values,” according to an internal briefing note that Dying with Dignity obtained through a freedom-of-information request.

“There are 7 cities/towns in Ontario with potentially objecting hospitals that have no alternative hospitals within 100 km. Moreover, there are 4 other cities/towns with only one neutral hospital for the whole region.”

In Vancouver, when patients are looking for an alternative location to receive an assisted death, one option is Dr. Wiebe’s Willow Women’s Clinic on the 10th floor of a downtown high-rise.

The space has much to recommend it, according to Dr. Wiebe: wheelchair access, a separate waiting room for family and, in the larger of the two rooms she reconfigures for assisted deaths, a spectacular view of the mountains.

Still, there’s a makeshift feel to the arrangement. Patients take their last breaths on a bedsheet-draped patio recliner, the same piece of furniture on which the clinic’s regular clients recover after having an intrauterine device inserted.

In one “dreadful” case, a man who wanted to die without his family present was transferred from a Catholic facility and mistakenly left outside by a medical transportation service, next to the pounding of jackhammers, Dr. Wiebe said.

“We need to get to [the government] and say, ‘This is completely unreasonable – you can change it with the stroke of a pen,'” Dr. Wiebe said of the B.C. NDP’s decision to continue allowing publicly funded faith-based institutions to opt out of assisted dying.

B.C. Health Minister Adrian Dix declined an interview request for this story.

A spokeswoman for the Ministry of Health emphasized that all of the regional health authorities in B.C. have care co-ordination services that help smooth the transition for patients who have to move from one place to another for an assisted death.

She said the provincial government has “no plans to terminate” a long-standing agreement that allows members of a group called the Denominational Health Association (DHA) to refuse to provide services that are inconsistent with their religious values.

The DHA represents 44 health-care facilities in B.C., including the Louis Brier Home, where Barry Hyman wanted to die.


The entrance to the Jewish faith-based Louis Brier Home and Hospital in Vancouver.

A few weeks after meeting Dr. Wiebe, Lola Hyman e-mailed David Keselman, the chief executive officer of the Louis Brier Home, to formally ask that her father be allowed to die on site, despite the home’s policy.

Mr. Keselman sent his formal reply to Lola on May 25. “Quite some time ago,” he wrote, “the governing board, along with the leadership of Louis Brier, decided that Louis Brier will provide care and services to the residents according to the Orthodox Jewish stream.”

The home was willing to allow eligibility assessments, he continued, but not assisted death itself.

“Lola I realize that this may not be what you would have liked or have wanted to hear,” Mr. Keselman wrote. “If so I regret this.”

For weeks afterward, Lola weighed her options. She didn’t like the idea of sending her father to die at Dr. Wiebe’s office or an unfamiliar seniors’ home suggested by the care co-ordination service at Vancouver Coastal Health.

“The thought of doing my father’s provision in a clinical setting [with a bed] that looked like a dentist’s chair was so unsettling for me,” she said. “I didn’t share it with my father. I did not burden him with any of the logistics. I just said, ‘When you want it to happen, Dad, it will happen.'”

Mr. Hyman ultimately decided to die on June 29.

Leah and her wife, Tori, drove up from their home in Oregon that day to be with Lola and Jackson in Mr. Hyman’s room.

Early in the evening, Lola went to the front door of the nursing home to welcome Dr. Wiebe and a nurse as though they were old friends paying a visit.

They hid their medical equipment and lethal drugs in oversized bags.

Dr. Wiebe, her nurse and Lola went in to Mr. Hyman’s room and shut the door. Leah, Tori and Jackson stood guard outside.

When a nurse from the home came by to try to give Mr. Hyman his regular medications, Leah offered to deliver the pills, shooing the nurse away with a forced joke or two as though she were not minutes away from watching her father die.

“It was rough,” she recalled, crying. “I was not the best daughter. We just didn’t communicate well. We loved each other and we knew each other and we were there for each other. But this was the one thing I was going to make sure that we did, that we followed through on. He was going to go the way that he wanted to go.”

When Dr. Wiebe was ready to begin injecting the medications, Leah, Tori and Jackson came in and joined Lola at Mr. Hyman’s bedside.

He died peacefully in about 10 minutes that felt much longer to his family. “I’ll never forget looking at the door all the time,” Leah said, “terrified that someone was going to come in.”

In the end, nobody interrupted Mr. Hyman’s death. Dr. Wiebe filled out the death certificate, gave it to Lola, and left.

About 20 minutes later, Lola approached the home’s nursing station and did something she instantly regretted: She told them her father had died, but didn’t say how.

“I was frozen,” she said. “If I could go back, I would have walked up to that nursing station and said, ‘Dad passed of [medical aid in dying],’ but I can’t imagine what I would have been bombarded with as Dr. Wiebe was getting into her car.”

The next morning, after Dr. Wiebe reported the details of the case to Vancouver Coastal Health, Lola sent the Louis Brier Home a copy of Mr. Hyman’s death certificate.

The aftermath of Mr. Hyman’s death was hard on the home’s staff, especially the front-line workers who were initially puzzled by his unexpected death, Mr. Keselman said.

“We had no opportunity to communicate with the staff, to prepare them, to explain anything,” he said. “It was very traumatic.”

Mark Rozenberg, the chair of the ethics committee of Louis Brier’s board, emphasized that the home makes no secret of its opposition to assisted dying.

“Anyone who comes here knows what our policy is,” he said. “And if they don’t like the policy, they should go somewhere else.”

The home has since filed a formal complaint against Dr. Wiebe with the College of Physicians and Surgeons of British Columbia, the regulator for doctors in the province.

The complaint does not faze Dr. Wiebe; she is confident the college will see she was fulfilling her patient’s wish to die at home. (A college spokeswoman declined to comment.)

But Lola is heartsick at the thought of Dr. Wiebe in trouble, just as she is heartsick about having upset the front-line staff at Louis Brier.

None of this – including the stress her family experienced on the evening of Mr. Hyman’s death – would have happened if the government compelled all publicly funded health-care facilities to allow assisted dying, Lola said.

“Everyone is entitled to their religious beliefs and traditions and customs,” she said. “But when it comes to somebody who is very sick and dying, we need to have a different approach.”

Complete Article HERE!

Share
01/7/18

A time to die? Why I believe in the right to choose

Share

It’s the beginning of a new year and the script is that we talk about hope. It was a challenging 2017 but things will be OK. New opportunities, fresh blessings, more love and more joy.

 

So why am I wanting to talk about death? Well, it’s personal and also professional.

A doctor watches over a deceased hospital patient.

By Rosie Harper

It’s personal because I have just booked flights back to Switzerland to go to the funeral of my much loved uncle Albin. He died two days before Christmas, aged 82, gently and peacefully with his family around him. About six years ago his younger brother Otto also died peacefully with his family around him. The difference was that Albin died of old age and dementia, Otto died of a nasty aggressive brain tumour. Albin died ‘naturally’. Otto, being Swiss, was able to request and receive the help he needed to die in a dignified and pain-free peaceful way. This merciful intervention in no way changed the fact of his death, and even now the sorrow is hard to bear, but it did cut short the last bitter agonies of the manner of his dying.

It is professional because in the parish where I work there are a lot of funerals. Mostly the bereaved tell me of the immense kindness of all around; family and friends, doctors and nurses. They tell of the shock of sudden unexpected death and also the oblique conversations about the use of morphine. They also sometimes tell me of bad deaths. Deaths where there is no way of giving the dying person their final wish: ‘Please, dear God, please help me to die.’

Don’t tell me that the time of someone’s death is purely God’s business. That at the moment when all a human soul wants is for it to end, God stands at the end of the bed and says: ‘No my child, it is my will that you suffer just a few more days.’

That is pure fatalism and superstition. Even people who would use language such as ‘God has a plan for your life’ don’t actually mean that everything that happens to them from birth to death is controlled. Of course not. We rejoice in our free will, even in the knowledge that we risk misusing it. That’s part of the deal. Our conception is a risk. We may be born to loving parents, or our mother might have been kidnapped and raped. The will of God? Throughout our lives we make choices and many of them are life and death choices. To smoke or drink or over-eat. To enjoy extreme sports, to ride a motorbike. For all those things we choose and we also take responsibility.

When our lives are nearing the end there are now many societies where that degree of both choice and responsibility remains. That is not the case in the UK.

Just when you might think we need our freedom the most, the medical profession, by law, takes it away from us. Just when you might think that God would most honour the freedom he has given us, the Christian community takes it away from us.

I’m with Hans Küng. If the time comes, and it is necessary for me, I would find it a fulfilment of my life of faith to be able to say to God: ‘Loving Father, I thank you for the most wonderful gift of life. The burden of it is now too much for me to bear and so with every ounce of love and gratitude I can muster I give it back to you.’

Complete Article HERE!

Share
01/6/18

Diabetics May Often Fare Poorly in Hospice Care

Share

By Serena Gordon

Decisions about diabetes care can become harder as people age, and that may be especially true for those needing hospice care.

A new study has found that, among people getting hospice care in a nursing home, diabetes care may lead to higher rates of dangerous low blood sugar episodes, known as hypoglycemia.

That finding came from the researchers’ analysis of data on nearly 20,000 people with type 2 diabetes, all in nursing homes and receiving hospice care.

In 180 days, the time period covered by the study, about one in nine people experienced low blood sugar episodes. But, among those treated with insulin, about one in three had low blood sugar episodes, according to the study’s lead author, Dr. Laura Petrillo, an instructor in medicine at Harvard Medical School.

Low blood sugar can cause weakness, sweating, confusion, shakiness and dizziness, which can cause suffering and reduced quality of life. The researchers defined low blood sugar episodes as blood sugar levels under 70 milligrams per deciliter (mg/dL).

“Hospice is care focused on maximizing comfort at the end-of-life, and usually includes stopping treatments that are unlikely to have short-term benefits,” Petrillo said. “Patients with type 2 diabetes were experiencing hypoglycemia, which would be an indication that there was room for improvement in their diabetes care.”

The study also looked at high blood sugar episodes, defined as blood sugar levels over 400 mg/dL. High blood sugar — hyperglycemia — can cause excessive thirst and a need to urinate more frequently. During the 180 days, 38 percent of patients treated with insulin had low blood sugar, 18 percent had severe low blood sugar and 35 percent had high blood sugar.

Blood sugar levels were checked an average of 1.7 times a day for people on insulin and 0.6 times a day for those who weren’t given insulin, according to the report.

People in the study were receiving end-of-life care at Veterans Affairs nursing homes between 2006 and 2015. All were 65 or older, and nearly all — 98 percent — were men. About 83 percent died before 100 days.

The study findings bring up an important issue — the need for more specific guidelines for diabetes management in nursing home and hospice patients, according to Dr. Joel Zonszein, director of the Clinical Diabetes Center at Montefiore Medical Center in New York City.

Those institutions often “export guidelines for hospitalized patients, and end up continuing to use a lot of medications that cause hypoglycemia,” he said.

Zonszein noted that insulin isn’t the only medication that can cause low blood sugar levels. Some oral diabetes medications also can cause blood sugar levels to drop too low.

In addition to causing people to feel terrible, low blood sugar levels can also increase the likelihood of falls — a concern in hospice facilities and in nursing homes, he explained.

“If medications are not improving quality of life in hospice, it doesn’t make sense to use them,” Zonszein said. “There are many newer medications that don’t cause lows and control the highs. They cost more, but you don’t have to monitor patients as much,” so ultimately they’re likely cost-saving, he suggested.

Matt Petersen, managing director of medical information for the American Diabetes Association, said that the study adds to the understanding of end-of-life care for people with diabetes.

“Hypoglycemia is to be avoided for safety and quality of life, but severe hyperglycemia is also to be avoided for the same reasons — left to go too high, glucose levels can lead to catastrophic (and very unpleasant) metabolic crisis,” Petersen said. “In patients that may not be eating well, estimating insulin dosing to match food intake can be challenging.”

Petersen said it appears from the information provided that patients in the study were receiving individualized care based on their health condition, which is what the American Diabetes Association recommends for care.

“Care should involve a comprehensive consideration of what will ensure the best circumstances for the patient,” he noted.

The study authors pointed out that about one-quarter of people in the United States die in a nursing home, making this a problem many people might face.

What, then, can people do to ensure they or a loved one receives the right care for them in a nursing home, particularly as they near the end-of-life?

“Advocate for your loved ones,” Petrillo advised. “Ask for a medication review, and make sure that medications are geared toward providing comfort and that they’re not receiving anything that doesn’t have a short-term benefit.”

The study was published as a research letter in the Dec. 26 online edition of JAMA Internal Medicine.

Complete Article HERE!

Share
01/5/18

The Greenest Things to Do With Your Body After You Die

Share

By Amelia Martyn-Hemphill

“When I first laid eyes on it I was like, ‘Oh my God, I have to have that,'” said Amy Cunningham, 58, as she ran her hand over a biodegradable, wicker coffin. It resembled a large, woven picnic basket lined with white muslin. “It was like seeing a beautiful dress on Saks Fifth Avenue,” she added with a radiant smile.  

Cunningham is not a typical funeral director. She’s a fashionably dressed mother of two who used to write for women’s magazines. Swapping editorials for embalming was a lengthy training process. But now, her team at Greenwood Heights Funeral and Cremation Services in New York is part of the latest green revolution: environmentally friendly eco-burial. 

 
Every year, cemeteries across the U.S. bury over 100,000 tons of steel and approximately 1,500,000 tons of concrete from coffins and re-enforced vaults, according to the Casket and Funeral Association of America. Cremation releases carbon emissions and mercury from dental fillings into the atmosphere. Embalming with formaldehyde has been linked to higher risks of cancer and respiratory problems in mortuary workers. With the death rate set to rise as the baby boomer population ages, the traditional funeral industry is becoming more and more of a strain on the environment.

The green burial movement is championing sustainability and a more natural approach to death. Forgoing the embalming process, they advocate biodegradable coffins made of untreated wood, cardboard, or wicker. Shallower graves expose the body to the layers of soil most richly populated with decomposing organisms. Burials take place in protected, natural burial grounds outside urban areas, with graves marked by GPS or simple carved stones. It’s a move back to the more ancient burial traditions practiced until the Civil War (and still favored by Jewish and Muslim communities).

“It seemed somewhat perverse to me that someone can come into the world in a natural way and go out poisoning it,” said Herby Reynaud, a 42-year-old software developer, who stumbled across the idea of green burial after the death of his mother, Marie, last year. He felt that the practice aligned better with both his environmental principles and their Haitian background, he said. When he visited Sleepy Hollow Green Cemetery and National Park for the first time, a herd of deer was grazing on what was to be his deceased mother’s burial plot. It felt like a good sign.

On the day of the funeral, around thirty friends and family crowded around in the September sunshine to celebrate Marie’s life with readings, songs and stories. They filled the rugged grave by hand. The children planted flower seeds. “My cousin said it was artisanal–crafted,” said Reynaud, “and I think that’s what a green burial allows for–you can create something that’s specific to your experience.” Explaining the unconventional service to his conservative, Catholic family ended up being part of the charm. “Everything was a conversation piece which allowed us to weave a story and give the service meaning and context and richness and texture,” he said. “Everyone appreciated it. I appreciated it. It was definitely something different.”

Green burial is all about reconnecting death and nature, explained Cunningham. She pushed up the sleeves of her earth-colored cardigan and flipped through a catalog of green-burial products. Besides woven caskets, there are soluble salt urns and seed-filled scattering tubes. There’s even the option to transform the remains of a loved one into a hand-crafted piece of amber jewelry. Products can be adorned with photographs, drawings or hand-written messages. It’s less rigid and more personal, Cunningham said. Taking part in the burial process is also encouraged. Families can dig or fill graves and plant memorial trees. “Having these kinds of alternative burials helps families feel they are doing something innovative and creative,” explained Cunningham, who had just returned from the latest green burial convention in Tampa. “It’s an experience, it’s not the conventional funeral and families look back on it as something uplifting.”

“I think people recognize that something’s not quite right with traditional funerals,” said Joe Sehee, a former Jesuit lay minister who founded the Green Burial Council in 2002. They regulate practice and educate the public on the green options available. “There’s a paradigm shift which is about to take place in this field. We’re in a really interesting period because people have the ability to really change things and that doesn’t happen very often,” he said.

“Consumers know what they don’t want. They know they don’t want the funeral they saw their grandmother have: very formal, very stuffy, very clinical,” explained Darren Crouch, president of Passages International, a green funeral product service. The use of biodegradable materials also substantially lowers funeral costs. “The products we produce are soft, warm and have rounded edges so they have a very different feel to traditional funeral products, which tend to be cold and heavy marble or metal.”

“Consumers don’t want the funeral their grandmothers had: very formal, very stuffy, very clinical.”

Cunningham steers families looking to “green up” cremation toward innovative organizations such as Eternity Reefs, based on the Florida coast. They work to enhance ocean ecosystems by mixing the ashes of the deceased into environmentally friendly reef ball formations. Dropped onto the ocean floor, they encourage the growth of coral and sea life. “We have numerous examples of people scheduling dive expeditions and boating excursions to visit their loved one’s reef,” said George Frankel, the CEO of Eternal Reefs. “In fact, we know of entire families who learned to dive so they can participate.”

Injecting some imagination into the burial process has produced some scientific innovations. Harvard-educated artist and environmental researcher Jae Rhim Lee is cultivating a breed of “infinity mushroom.” The sci-fi sounding fungi can decompose bodies, absorb toxins, and deliver natural compost back into the soil. She gave a TED talk in the U.K. dressed in a prototype of what she has named “the mushroom death suit,” a shroud infused with the mushroom spores. It looks like a pair of “ninja pajamas,” according to Lee. But as well as speeding the breakdown of the dead body, the mushrooms will also absorb accumulated pollutants such as preservatives, pesticides, and heavy metals. “I imagine the infinity mushroom as a symbol of a new way of thinking about death,” said Lee, as she entreated the audience to take responsibility for their impact on the planet. “By trying to preserve our bodies, we deny death, poison the living and further harm the environment.”

But attempting to spark an environmental paradigm shift doesn’t come without controversy. One green burial practice generating debate is Alkaline Hydrolysis, or “Resomation.” It’s being touted as the more eco-friendly version of cremation. Currently legal in only seven states, it involves dissolving the body in acid under high pressure. After reducing the corpse to a syrupy, brown mixture, most of the liquid is then drained off and the remains collected. The idea of loved ones being “flushed” into the sewage system has raised eyebrows and ethical concerns in the US. European markets, on the other hand haven’t been deterred, praising the environmental benefits and the lower costs of the procedure.

“Everyone has their own personal preference,” said Cunningham. “Some people really don’t like the idea of the body disappearing into the soil and they’re fighting it in every single way. But why use a lot of energy to make the body’s own energy potential inert?”

Complete Article HERE!

Share
01/4/18

Reconciling science, belief and experience

Share

Making Rounds With Oscar

By Veenu Sandal

Bibi had always been strong and robust and even when she sustained injuries in dog fights, she would bounce back to her normal spirited self very quickly. Her unexpected, untimely death on the 26th of this month, just a day after Christmas caught everybody unawares. Everybody—except Tutu, one of my gentlest dogs often called the Dalai Lama by many people.  On the 22nd, four days before Bibi died, Tutu had given her the “once-over”, sniffing her from head to tail and he obviously sniffed death because thereafter he detached himself from Bibi and behaved as if she didn’t exist, something he’s done each time he’s sensed death. I’d witnessed Tutu’s verdict but subconsciously in an act of self-denial, chose to ignore it. If one factors in Tutu’s “once-over”, Bibi’s death was not really untimely.

Incidentally, out of all the dogs with me at present, Tutu is the only one who can sense death several days in advance, an ability, gift, prescience, call it what you will,  he seems to have inherited from his parents. Across the world, there are innumerable documented instances of dogs unerringly sensing death not only amongst themselves but amongst humans and other animals too. Cats too have the power to discern the approach of death well in advance.

Geriatrician David Dosa has written a book, Making Rounds With Oscar: The Extraordinary Gift of an Ordinary Cat. Oscar, said to have “predicted” more than 100 deaths, is internationally famous, having featured on Discovery Channel and other prestigious platforms.  According to Wikipedia, “Oscar is a therapy cat living in the Steere House Nursing and Rehabilitation Center in Providence, Rhode Island, U.S. since 2005… Oscar appears able to predict the impending death of terminally ill patients by choosing to nap next to people a few hours before they die. Hypotheses for this ability include that Oscar is picking up on the lack of movement in such patients or that he can smell biochemicals released by dying cells…”

Do animals also know when they themselves are going to die? Jennifer Coates, a house call veterinarian specialising in end-of-life care, wrote a few months ago, “From elephants who grieve for the loss of a herd member to whales who won’t leave their dead babies behind, many species react to death in much the same way that people do. But are animals able to understand that they are going to die themselves? That is a different, more existential question…”

Coates has witnessed several instances when it seems as if a pet has chosen the “right” time to die. She wrote, “I believe my own dog, Duncan, may have had a sense that his end was near…”. Several of my dogs and cats have been aware in advance of their own deaths too. 

Sensing death is not confined to dogs and cats. Karen Briggs, an equine expert who has authored six books, reveals that “… much of the information horses receive about their world is gained through their sense of smell… While we are vision-oriented,… horses rely far more on chemical messages in the air…Many trainers over the centuries have agreed that horses also seem to be able to recognise the smell of death, sometimes reacting suspiciously to a spot where another horse has died, sometimes for months or years after the animal perished…”

In a blog in the Huffington Post, Georgianne Nienaber  has written about horses from a paranormal perspective. “None of it makes much ‘scientific’ or even theological sense, but the special energy of the horse is an undeniable fact. Call it what you will: soul, energy or electrical waves that can be measured by machines, something powerful and healing resides within ‘Suŋkawakaŋ’ the horse…How do we explain stories told by the Dakota 38 Memorial Riders about ghost horses seen in the tree lines along the 330-mile route from the South Dakota Lower Brule Indian Reservation to Mankato, Minnesota during the winter storms of December? The annual ride remembers the hanging of 38 Dakota American Indians by order of Abraham Lincoln in 1862. It is not commemoration, it is remembrance, and the spirit horses watch over the riders on this dangerous journey of witness…”

Birds too can sense death, their own and that of others. My aunt had a very close bond with her pet geese and fed them their first meal of the day with her own hands. That fateful day, they refused to eat and were strangely quiet. Had they all picked up some infection, she wondered. She went back to the house to call the vet and had barely walked through the doorway when she collapsed and died. Her geese had picked up not an infection, but the intimation of death.  

The UK Telegraph carried fascinating findings in the USA on golden-winged warblers—tiny, delicate birds weighing just nine grams, or about as much as a palmful of coins, which showed that yet somehow they knew a massive storm system… was on its way one to two days in advance, and fled. According to ecologist Henry Streby, “When the birds flew off, the storm was still hundreds of miles away, so there would have been few detectable changes in atmospheric pressure, temperature and wind speed. The warblers in our study flew at least 1,500 kilometres total to avoid a severe weather system…” Scientists think that this sixth sense that birds possess has to do with their ability to hear sounds that humans cannot. Birds and some other animals have been shown to hear infrasounds, which are acoustic waves that occur at frequencies below 20 hertz.

With so much evidence about extra-sensory perception and other world connections  in dogs, cats, horses, birds and other animals, how is it that we humans, supposedly the most advanced species, lag so far behind, particularly in sensing death? There are Freudian theories, Jungian therories and the like, categorical scientific findings and theories like “They can see and hear things that humans cannot”.  And yet there are many recorded instances of humans who sensed death. So is it that most times we humans are so immersed in materialistic pursuits that we fail to detect other world signals? Or is it that we subconsciously choose to remain in self denial, like my own self denial when Tutu “declared” that Bibi’s time was up? In Nienaber’s  words, “Science, belief, and experience can be reconciled… A question answered with a question requires meditation and connection with what is unseen and unknown…”

Complete Article HERE!

Share
01/3/18

‘There will be an afterwards’: how a mother prepared her sons for her death

Share

When Kate Gross was dying, aged 36, she told her sons there would be life after her death. But how would they actually cope with losing her?

‘Afterwards, you will need to …’ Kate Gross with her twin sons Isaac, left, and Oscar

By Jean Gross
When my grandson Isaac was very small, his mother, Kate, would say, “I’ll miss you” when she travelled away for work. Later, when he was three, I remember him running after her in the park when he couldn’t quite keep up with her, crying: “Don’t miss me, Mummy.” To him, “to miss” meant “to leave”. “Don’t miss me, Mummy”, meant don’t leave me.

But, in the end, Kate did have to leave him, and his twin brother, Oscar. When the boys were five and she was 36, she died. It was Christmas Day 2014, minutes before the boys woke up to ask their dad, Billy, if it was time to open their stockings.

In the months before Christmas, once Kate had been told her cancer was terminal, she came up with a way in which we could all talk about a future without her. She called it Afterwards. “Afterwards,” she would say “you will need to …”, “Afterwards, Billy will …” Now, with some distance between us and that worst of Christmases, I want to write about Oscar and Isaac’s Afterwards – how they have managed, and whether Kate’s fears for them, or her best hopes, have come true.

It is a positive story. The boys are now sturdy, happy eight-year-olds. We have learned, with surprise and relief, how resilient they are, and how easily they have taken to the fact that their mum is not here – and yet is still here, in the fabric of her house, in the memories, in the ways in which we constantly tell them they resemble her.

Initially, the boys each reacted very differently to their loss. Oscar is stoic and factual by nature, with a passion for numbers. When we told the boys their mum was going to die, he asked how old people were when they got cancer. Billy said it was usually when you were old; their mum was unlucky.

“How old is Mum?” asked Oscar.

“Thirty-six,” said Billy.

Then, “And how old are you, Dad?”

Oscar was working it all out, with numbers as his guide, and Billy knew to tell him that he wasn’t likely to get cancer, too.

Of the two boys, Isaac has always been a little more worried about love and loss, always at a different point on the objects-facts v people-feelings scale. After Kate died, he initially had more hurt places than Oscar – manifest in tummyaches at school and a wish to stay in and “help” his kind teacher, or occasional oblique insights into sadness. I remember being in the car taking the boys to change from school clothes into smart new jumpers and shirts for Kate’s funeral. I told them that some people might cry at the funeral. “Why?” asked Isaac. It’s just something grownups do, I said. “Why?” persisted Isaac. I said they would be sad because they missed Mummy. There was a pause, then Isaac said: “I had a dream.” I asked what his dream was about. “I was on a train and Dad wasn’t and the train went off without him.”

But apart from these brief moments, there has been little sign of grief or worry. Oscar likes to tell me his bad news, like a cat bringing a mouse it has caught and tenderly laying it on your pillow. Once told, it becomes less important. But the bad news has never been about Kate, only grazed knees, fluffing a save in football, missing his computer time at school. Her death did, however, offend his sense of justice. “It’s not fair,” he said when we first told him she would die soon. “The other children in my class will have mummies.”

Kate and her mother, Jean Gross, with Isaac, left, and Oscar

Grieving, I think, asks that you live in the remembered past or a denuded future. Oscar and Isaac still pretty much live in the present. Nor have they a great capacity for introspection. Once I told them they had been unlucky to lose their mum. “Why?” asked Isaac. They didn’t understand; they were unable to examine their experiences, as distinct from simply living them.

There is little point in expecting young children to be sentimental. The summer after Kate died, we were on holiday in France, visiting a church; the boys saw candles and asked if they could light some. For Mummy, we said, and thought of her. But for them what mattered were the immediate sensory experiences – the physical act of striking a match, and the satisfying clunk as the offering money fell to the bottom of the collection box. Things don’t stand for things when you are small. They simply are.

I have often wondered why is it that some children cope with adversity, while others falter and fall. Research tells us that resilience is linked to social support – a sense of belonging to a community, and having at least one adult in your life who believes in you as a worthwhile person. And they have social supports in abundance – Billy, their dad, of course, and all the family and Kate and Billy’s friends. Just as important has been the boys’ own social circle. The children at their small, loving, Catholic school, and their parents, have closed around Oscar and Isaac and created a force field that keeps the Dark Side well away.

Science has been helpful to the boys, too; their dad is, after all, a scientist. They wanted, and got, proper explanations about cancer cells and death. A few months after Kate died, we heard them chatting in bed: “Everything dies eventually,” said Oscar.

“No one lives to infinity,” said Isaac.

Religion, doled out at school, has given the boys a language in which to talk about their loss. People often told them that their mum was in heaven, and they accepted this. In one bathtime discussion, Oscar told me: “There must be heaven.”

“Why?” I asked.

“Because if there wasn’t, where would God live?” he said triumphantly.

Even so, you have to be careful. One of Kate’s friends, whose wife died when his three girls were small, told us that one of them had said she wanted to be run over by a bus, “so I can go to heaven and be with Mummy”. As for, “God took your mummy because he wanted her to be with him in heaven,” I can’t think of anything more likely to make a child seriously annoyed with such a selfish higher power.

Angels are safer territory. At a birthday party, when the children were colouring in angels, Isaac said: “My mum’s an angel.” Oscar agreed: “Yes, she is.” But the angel for the top of the Christmas tree got broken last year and this year we had to get a star instead. I wondered if the boys were confused, what with these broken and unbroken angels. How do children make sense of all this? And how do they reconcile science and belief?

Becoming older and growing in understanding, the boys have talked recently with their dad about this. “It’s belief until it’s proved and then it’s science,” the boys told me.

“So what about angels,” I asked.

“They must be belief ’cos you can’t see them flying round, can you,” Isaac replied.

It is hard to know exactly what the boys do remember about Kate. We try to help by talking about her, whenever we can. Many people have told us how important it is to keep the person who has died in the conversation. A kind stranger, for example, wrote to us: “Both my parents died of cancer. I’m sorry for your loss. PLEASE tell stories about your Kate to your lovely grandsons. We stopped talking about our mother when she died – it was a black space that became hard to fill.”

Sometimes, I hold Kate up as an example for the boys to live up to. When they were complaining about having to keep going back over pieces of writing at school, to “improve” them, I told them that when their mum was writing a book, she had an editor who suggested changes to words and things to move around. I told them how hard she worked to make those changes. “And did she have a rubber?” asked Isaac, concerned.

We had a letter from a woman who lost her own mother as a child. She wrote: “My middle sister and myself had funny little memories of my mum and it truly wasn’t until I had my first child that I recall missing her.” Perhaps that will happen to Oscar and Isaac; I expect they will circle round the idea of Kate’s death and come to it at unexpected moments in unexpected ways. Maybe some later loss will take them back to how it felt in childhood. Or maybe, in a few years, the loss of a mother will simply give them a convenient hook on which to hang their inevitable non-specific teenage angst.

I hope they will be OK, long-term. But right now it is clear to me that they are not diminished by Kate’s absence, unlike us – my husband and I – who are. And if Kate could come back, just for a moment, I would tell her that she need not have been afraid. Oscar and Isaac are fine, just fine.

Complete Article HERE!

Share