Month: August 2017

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Nearly 1 In 5 Hospice Patients Discharged While Still Alive

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Hospice care is for the dying. It helps patients manage pain so they can focus on spending their remaining time with loved ones. But in recent years, nearly one in five patients have been discharged from hospice before they die, according to government reports.

A study published last month in the journal Health Affairs finds that hospices with the highest rate of so-called “live discharges” also have the highest profits. The lead author is Rachel Dolin, a David A. Winston fellow researching health policy. Her paper found an association between high live discharge rates and high profit margins, but it didn’t determine the cause.

“It’s important to continue to study this area to get a better sense as to whether profits are driving the decision to discharge patients from hospice, rather than patient preferences and needs,” says Dolin.

To qualify for hospice care, two doctors must certify that a patient is expected to live no more than six months. But patient James B. Nelson discovered that sometimes the doctors are wrong.

“It was decided that I was not dying fast enough,” he told Arizona Public Media in 2015. “And so, to put it most succinctly, I flunked the hospice program.”

Nelson died a few months after giving that interview, but his situation isn’t all that unusual.

Government reports show that the median rate of hospice patients discharged before death has climbed steadily since at least 2000, peaking in 2012 and 2013 at almost one patient in five, though more recently the percentage has declined somewhat. But the rate actually varies widely from one care organization to another. Some hospices discharge less than 2 percent of their patients prior to death, while others discharge more than 80 percent. Non-profits have lower rates of live discharge than for-profit hospices. Regionally, live discharge rates are highest in the South.

It’s important to understand, though, that when patients are discharged from hospice, they don’t necessarily go anywhere. Hospice agencies, whether they are independent or affiliated with an institution like a hospital, usually deliver services to patients in their homes.

Medicare pays the bills for the vast majority of patients receiving hospice care, at a cost to the government of at least $15 billion a year. Federal regulators have questioned whether high rates of live discharge mean that hospices are making money by admitting patients who aren’t actually dying.

But these decisions aren’t that clear cut, says Dr. Joe Rotella, chief medical officer for the American Academy of Hospice and Palliative Medicine. “We see more and more patients that have conditions like Alzheimer’s disease or Parkinson’s disease that don’t always follow a predictable course,” says Rotella.

Some who study aging are concerned that certain hospices are gaming the system. That’s a worry of Susan Enguidanos, an associate professor in the Leonard Davis School of Gerontology at the University of Southern California. For example, she says that some hospices may be trying to avoid paying for costly treatments by discharging patients temporarily when they need to go to the hospital.

“Individuals that are going in for these very brief health issues are coming out and then, they’re being readmitted to those [same] hospices,” says Enguidanos.

That’s not a good reason to discharge someone, says John Keyserling, senior vice president for communications and policy at the National Hospice and Palliative Care Organization, the trade association for hospice providers.

“Any association between profit margins and clinical decision making is inappropriate and not something that the hospice community supports,” Keyserling says.

That hospice community has nearly doubled in size since 2000. Susan Enguidanos says it’s also changed a lot.

“Hospice organizations started as grass root efforts and were largely non-profit for a long time,” she says. “Now we’ve had a huge increase in for-profit hospices.” There’s a concern, says Enguidanos, that by discharging patients early, some hospices may be “trying to avoid costs that they should be responsible for.”

Whatever the short-comings of some hospices may be, Keyserling says that his biggest worry is that people who could be helped by hospice aren’t taking advantage of it in time. He says about half of patients die within 17 days of being admitted. And that turns hospice into “crisis care” instead of the comfort care it’s intended to be.

Complete Article HERE!

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Life lessons from dying people

In summer fellowship, students pursuing health careers learn directly from the terminally ill

Skidmore College student Elisa Smith of MA, left, Union College student Matt Liquori of CT, center, and Colgate College student Yohary Fabian of Colonie with a practice mannequin at the Joan Nicole Prince Home

[M]atthew Liquori is spending his summer with dying people, and he knows what you’re thinking.

“Friends and family, when they hear, the first thing they say is, ‘Wow, that’s so depressing,'” he said. “But it’s really not.”

Far from it, the 21-year-old insists.

As part of a summer fellowship run by Union College, the incoming senior is spending eight weeks volunteering at the Joan Nicole Prince Home, a home where people with three months or fewer to live come to die in peace.

His program director calls it a crash course in death and dying — that human condition that strikes fear into the hearts of many but that future doctors, nurses and social workers will have to face head-on eventually. So why not face it sooner rather than later?

That’s how Liquori, a pre-med major at Union, recently found himself cooking chicken gizzards for a dying man and having one of his best days ever.

Rememberance board at the Joan Nicole Prince Home on Thursday, July 27, 2017 in Scotia, N.Y. The home is dedicated to providing a safe, comfortable and caring residence for terminally ill patients in need of a home during their final days. Five local college students are spending their summers caring for the terminally ill as part of a relatively new fellowship program offered by Union and Skidmore colleges.

It was the man’s first day at the home, and the student volunteers wanted to know what he liked so they could go shopping and fill the cupboards with food he might eat. But the 51-year-old — a gaunt, depressed man on the losing end of a nearly three-year battle with rectal cancer — had no appetite and little success when he did try to eat.

“It’s a tough transition and I think he was overwhelmed and not really willing to open up to us,” Liquori recalled. “So eventually we were like, what’s your favorite food in the world? And he responded, ‘It’s this Greek gizzard soup my mom and grandmother used to make growing up that we’d always have before our big Easter feast.'”

When the students went out and came back with the ingredients for the soup, the man suddenly grew animated. He walked them through how to make his passed-down family recipe, took selfies with the students and called his mom to let her know what was happening. By the time it was ready, he was so excited he was shaking, Liquori recalled.

“It was an awesome welcome for him because right away he was like, ‘It’s gonna be OK here,'” he said. “And that was really cool. It’s days like that that aren’t depressing because you go home and you feel great, and you’re like, that was a great day.”

The Joan Nicole Prince Home is a unique operation. Only two people at a time are allowed to live at the house, a handsome little cape at the end of a quiet cul-de-sac in Scotia. That’s on purpose — any more and the home would have to be run like a medical facility, with all its rules, regulations, poking and prodding.

That’s exactly what its residents are trying to avoid, and what its founders had in mind when the home was built in 2006.

Living room at the Joan Nicole Prince Home on Thursday, July 27, 2017 in Scotia, N.Y. The home is dedicated to providing a safe, comfortable and caring residence for terminally ill patients in need of a home during their final days. Five local college students are spending their summers caring for the terminally ill as part of a relatively new fellowship program offered by Union and Skidmore colleges.

Residents know they’re dying. Their doctors know they’re dying. By the time they arrive at the home, they’ve usually tried all the treatments, cures, medication regimens and so forth. Their time is up and they know it, and they just want to die in peace.

That’s hard to do in the cold and sterile atmosphere of a hospital, or at home where a loved one may not have the mental, physical or financial wherewithal to keep them comfortable. At the Joan Nicole Prince Home and other comfort-care residences, hospice workers visit to administer medical care and volunteers handle everything else — the cooking, cleaning, bathing, help going to the bathroom, or getting in and out of bed.

The psychological relief it provided Liquori’s patient, who wished to remain anonymous due to privacy concerns, and his wife was enormous.

“I can finally relax, you know? And my wife can finally breathe,” he said Thursday, puffing a cigarette on the home’s back porch. “She doesn’t have to walk in and go did you take this medicine? Did you take that medicine? Did you take this? Do I need to change your bandages? Do I need to change your colostomy? All that stuff. We can actually be husband and wife instead of patient and caregiver.”

Volunteers are needed 24/7, and three years ago board member Carol Weisse realized she had the ideal pool of candidates: wannabe doctors, psychologists and social workers.

Weisse teaches behavioral neuroscience, death and dying, health psychology and other courses at Union College in Schenectady. Hoping to marry the home’s need for volunteers and her students’ need for hands-on experience and research, she applied for a grant and launched the Community Action, Research and Education (CARE) Summer Fellowship Program, open to students from six liberal arts colleges across the state.

Students in the program volunteer 24 to 30 hours a week for eight weeks, gaining bedside experience and completing online coursework on death, dying and palliative care along the way. They also conduct research — last year students researched the changing nutritional needs of people in the final stages of life and turned it into an educational brochure for family members visiting the home to consult.

“Health care is very focused on cure — I’m going to cure this, I’m going to treat that, I’m going to give you medicine for this,” Weisse said. “But this experience forces students to step back and realize, there isn’t always a cure, but that doesn’t mean there’s nothing we can offer to alleviate your pain, your suffering. There is healing that happens at the end of life, and being present, being comforting and attentive is a form of medicine and it does provide healing.”

Liquori and the other student volunteers feel they’ve gained more invaluable insight into human health, psychology and empathy than they ever could have gained in the classroom.

Meditation room at the Joan Nicole Prince Home on Thursday, July 27, 2017 in Scotia, N.Y. The home is dedicated to providing a safe, comfortable and caring residence for terminally ill patients in need of a home during their final days. Five local college students are spending their summers caring for the terminally ill as part of a relatively new fellowship program offered by Union and Skidmore colleges.

Said Yohary Fabian, a 21-year-old pre-med student at Colgate University: “I want to be a doctor, and sometimes people die and you can’t save them. Sometimes there’s a disease and the knowledge for a cure just isn’t there yet. People suffer every day and we have to learn how to cope with it.”

Elisa Smith, a social work major at Skidmore College, found value in the art of silence — learning to be quiet and attentive, and not shying away from uncomfortable conversations.

“One of the hardest things has been listening to the residents talk about their fear of what’s to come,” she said. “But I found it was really helpful to (a resident) when I would sit out on the porch with him and just listen when he tried to talk about the things he was feeling. And I would say it’s one of the most life-affirming experiences I’ve ever had.”

Weisse’s dream is to one day grow the fellowship, which relies on grant funding, beyond the three homes it currently helps in the Capital Region. In addition to the Joan Nicole Prince Home, fellowship participants have volunteered at Mary’s Haven in Saratoga Springs and Gateway House of Peace in Ballston Spa. There are 30 such homes across upstate New York.

“We’re not going to learn how to be comfortable around death without practice,” she said. “And because health care and death have been so institutionalized over the years, we don’t really have a lot of practice anymore. This is sort of changing that culture.”

Complete Article HERE!

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Crematory Is Booked? Japan Offers Corpse Hotels

Part mortuary, part hotel, Japanese corpse hotels allow grieving families to spend the night near the bodies of their loved ones as they make their final farewells. Here’s a look inside of one.

By MOTOKO RICH

[T]he minimalist rooms at the Hotel Relation here in Japan’s third-largest city are furnished with plain twin beds. Flat-screen televisions adorn the walls. Plastic-wrapped cups and toothbrushes are provided in the bathrooms. And just across the hall are the rooms where the corpses rest.

Checkout time, for the living and the dead, is usually no later than 3 p.m.

The Hotel Relation is what Japanese call an “itai hoteru,” or corpse hotel. About half the rooms are fitted with small altars and narrow platforms designed to hold coffins. Some also have climate-controlled coffins with transparent lids so mourners can peer inside.

Part mortuary, part inn, these hotels serve a growing market of Japanese seeking an alternative to a big, traditional funeral in a country where the population is aging rapidly, community bonds are fraying and crematories are struggling to keep up with the sheer number of people dying.

By custom, Japanese families take the bodies of their loved ones home from the hospital and sit for an overnight wake followed by a service the next morning in the company of neighbors, colleagues and friends. Then, in the afternoon, the body is sent to a crematory.
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But as neighborhood ties have weakened, funerals that once involved entire communities are increasingly the province of small, nuclear families. At the same time, Japanese society is getting old so fast and deaths per year are climbing so quickly that families sometimes have to wait several days before a body can be cremated.

The funeral for Hajime Iguchi at Sousou, a so-called corpse hotel in the Tokyo suburb of Kawasaki City, last year.

The corpse hotels offer a practical solution — a place where a body can be stored at low cost until the crematory is ready, and where small, inexpensive wakes and services can be held outside the home.

“We can say the supply doesn’t meet the demand,” mainly in urban areas, said Hiroshi Ota, an official at the Japan Society of Environmental Crematories. While Japan has an estimated 5,100 crematories, Tokyo, with a population of more than 13 million, has just 26.

“The demand for cremation will increase until the baby boomers disappear,” Mr. Ota said.

Japan has funeral parlors, too, an industry that developed as people moved from the countryside to the cities and it became difficult — and often impossible — to take corpses into high-rises. But they cater to larger groups and more elaborate ceremonies, and these days, that can seem a bit much.

In the bubble economy of the 1980s, “Japanese funerals were based on showing off to other people, and people cared how they were viewed by others,” said Midori Kotani, executive researcher at Dai-ichi Life Research Institute, an arm of one of Japan’s largest insurance companies. “But fewer and fewer people talk to their neighbors, so they don’t have to show off or think about how they are viewed by them.”

The corpse hotels are used by families who want a simpler affair, or want to skip a funeral altogether. According to Ms. Kotani, about 30 percent of deaths in the Tokyo area are not marked by a funeral service, up from just 10 percent a decade ago.

After cremation, families usually keep the ashes at home for 49 days before a burial service at a cemetery. On the 49th day, according to Buddhist tradition, the dead are believed to arrive at the next world.

Mr. Iguchi’s body on its way to a crematory.

When Hajime Iguchi died at age 83 last autumn, his sister and brother-in-law held his wake and funeral at Sousou, a corpse hotel in the Tokyo suburb of Kawasaki City. Mr. Iguchi, a lifelong bachelor, had died in a nursing home after a protracted illness, and had few friends left.

“Back in the day, we used to have funerals at home, but times have changed,” said his sister, Kunie Abe, 73. “Neighbors all used to know each other and would help one another out. But today, you don’t even know your next-door neighbor.”

The demand for “itai hoteru” is likely to grow. Last year, 1.3 million people died in Japan, up 35 percent from 15 years earlier, and the annual toll is expected to climb until it peaks at 1.7 million in 2040, according to the Ministry of Labor, Health and Welfare.

About 37 percent of Japanese women who died last year were over 90, with few surviving friends to mourn them. And close to one-fifth of Japanese men never marry or father children, leaving behind few relatives to plan or attend funerals.

The number of people dying alone is also on the rise. In Tokyo, for example, the number of people over 65 who died alone at home more than doubled between 2003 and 2015, the latest year for which government figures are available.

At the Hotel Relation here in Osaka, about a third of the customers forgo a formal funeral. Instead, they sit in the rooms with their dearly departed for a day or two, with only close family in attendance, and then send the bodies for cremation.

Relatives of Mr. Iguchi departing the crematory with his ashes.

“In the past, if you heard someone held a funeral just for family members, people in the neighborhood would say, ‘What kind of people would hold a family-only funeral?’ But now it is accepted,” said Yoshihiro Kurisu, the hotel’s president.

Corpse hotels are more economical than large funeral homes. According to the Japan Consumer Association, the average funeral in Japan runs 1.95 million yen, or about $17,690. The cheapest package at the Hotel Relation costs 185,000 yen, or about $1,768.

The package includes flowers, a room for the family to spend the night in the same room as the corpse, a traditional white gown for the deceased, a simply decorated coffin, transport of the body from the hospital and then to the crematory, and an urn to hold the ashes. Each additional night costs 10,800 yen, just under $100. Families who want separate rooms, wakes or funerals pay extra.

“Itai hoteru” first appeared about five years ago in Japan’s largest cities, and there are only a few across the country. Some have angered residents who do not want to live in such proximity to death and mourning.

Near the Sousou hotel in Kawasaki City, signs on fences protest, “Corpse storage: absolutely opposed!”

Hisao Takegishi, the hotel’s owner, said he understood why neighbors were uncomfortable. But he said his staff tried to be as discreet as possible when bringing in bodies.

A cemetery outside Tokyo. Nearly all people who die in Japan are cremated.

Inside, Mr. Takegishi painted the walls in pastel colors and equipped the rooms with green sofas and stools. They look more like start-up break areas than a setting for wakes or funerals. The entryway, with shelves of plants and a few books, evokes a spa.

“I did not want it to look too sad or lonely,” he said. Sousou has relationships with funeral directors and monks, and can help clients plan modest services.

Yuki Matsumoto, the executive director of the All Japan Funeral Directors Co-operation, which represents about 1,340 long-established funeral homes, said some owners of the new businesses paid little regard to standards or the dignity of the dead.

Japan does not require a license to open a funeral business, and there are few regulations for how they operate. “So in this situation, it is possible that bad-intentioned businesses can enter the industry,” Mr. Matsumoto said.

But Mr. Kurisu at the Hotel Relation said traditional funeral homes just resented the new competition. “I am hated by people in the business because I am driving down the prices of funeral services,” he said.

At Mr. Iguchi’s tiny funeral ceremony last fall, a monk chanted last rites as his body rested in a coffin lined with white satin. Five guests, all relatives, sat in folding chairs nearby.

After the chanting, they rose to lay flowers and origami cranes on Mr. Iguchi’s body, making a bright garland around his head and on his chest.

His sister, Mrs. Abe, leaned close to her brother’s ear. “So long,” she whispered.

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Pall bearing traditions have deep roots

By KARRIS GOLDEN

[I] recently read two books in which the notion of female pallbearers was portrayed as a novelty.

One was set in a village in southwest England at the outset of World War II. Most of the “able-bodied” have left the community to serve in the military. When a bomb results in the deaths of two women from the local choir, pallbearer duties fall to female peers — by default.

The second book was set in western Minnesota during the 1980s. A high school student committed suicide, and two female classmates volunteer as pallbearers. Despite the girls’ earnestness, several adults strongly discourage the notion.

The topic of women bearing a loved one’s pall is not a significant plot point in either book. However, both highlight the significance of pallbearers and some gender biases that continue to persist.

In our modern society, “pallbearer” is a general term. If you accept or volunteer to be a pallbearer, you will help convey the casket during various parts of the funeral and burial. It usually involves helping to carry the casket at least a short distance.

Men and women who fill pallbearer roles don’t necessarily attach religious convictions to it. However, the role tends to hold spiritual meaning for those who accept and/or volunteer for the duties. That is, pallbearers essentially understand the duty includes conveying a loved one to his or her final resting place.

That is why “honorary” pallbearers are sometimes listed. Honorary pallbearers are almost always volunteers. The causes vary, such as having more than enough pallbearers or listing those who can’t physically fulfill the physical requirements.

In all cases, the role indicates the desire to fulfill a personal duty to the deceased.

The word “pall” originally comes from Christian traditions and refers to a cloth used to cover the dead.

Thus the practice of bearing a standard of mourning — generally, the “pall” — for the dead comes from various religious practices. These exist in some version across several belief systems.

Many religious scholars believe practices created around such funereal rites have ancient roots and form the foundation of humans’ first religious practices.

The liturgical significance of the pall essentially serves as a universal symbol of death.

For early Christians in north and west Europe, the pall was often black, in keeping with the color of mourning. For example, a poor Scot was buried in the simple black pall when he or she couldn’t afford a casket. Danes draped a black pall over the casket, wagons, carriages and horses.

Over the years, many belief systems have included messages of hope in funeral services, such as the Christian belief in the resurrection. For this reason, white is now a common symbolic or liturgical funereal color.

Considering the significance of the role, why are female pallbearers still relatively uncommon?

I combed through online discussion boards in search of candid conversations about perceptions of female pallbearers. I found sites where men and women alike offered their take.

Many believe it likely women aren’t as able to bear their portion of the weight. Meanwhile, women who insisted they could carry their fair share wondered if popular styles of women’s dress shoes knock them out of the running.

While I understand these opinions, I also believe they shouldn’t preclude women from taking up this role. When viewed as the symbolic and sacred responsibility of a child, grandchild, sibling or special friend, both men and women should rise to the occasion.

Complete Article HERE!

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Should I Help My Patients Die?

By JESSICA NUTIK ZITTER

[I] WAS leafing through a patient’s chart last year when a colleague tapped me on the shoulder. “I have a patient who is asking about the End of Life Option Act,” he said in a low voice. “Can we even do that here?”

I practice both critical and palliative care medicine at a public hospital in Oakland. In June 2016, our state became the fourth in the nation to allow medical aid in dying for patients suffering from terminal illness. Oregon was the pioneer 20 years ago. Washington and Vermont followed suit more recently. (Colorado voters passed a similar law in November.) Now, five months after the law took effect here in California, I was facing my first request for assistance to shorten the life of a patient.

That week, I was the attending physician on the palliative care service. Since palliative care medicine focuses on the treatment of all forms of suffering in serious illness, my colleague assumed that I would know what to do with this request. I didn’t.

I could see my own discomfort mirrored in his face. “Can you help us with it?” he asked me. “Of course,” I said. Then I felt my stomach lurch.

California’s law permits physicians to prescribe a lethal cocktail to patients who request it and meet certain criteria: They must be adults expected to die within six months who are able to self-administer the drug and retain the mental capacity to make a decision like this.
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But that is where the law leaves off. The details of patient selection and protocol, even the composition of the lethal compound, are left to the individual doctor or hospital policy. Our hospital, like many others at that time, was still in the early stages of creating a policy and procedure. To me and many of my colleagues in California, it felt as if the law had passed so quickly that we weren’t fully prepared to deal with it.

That aside, the idea of hastening death is uncomfortable for many doctors. In its original version, the Hippocratic oath states, “I will not administer poison to anyone when asked to do so, nor suggest such a course.” The American Medical Association, the nation’s largest association of doctors, has been formally opposed to the practice for 23 years. Its ethical and judicial council has recently begun to study the issue further.

At a dinner shortly after the law went into effect, I polled 10 palliative care colleagues on their impressions of it. There was a chorus of groans. Like me, they were being asked about it with increasing frequency, yet hadn’t found an answer that felt right. It wasn’t necessarily that we disapproved, but we didn’t want to automatically become the go-to people on this very complex issue, either.

This first patient of mine was not a simple case. When I walked into his room, he glared at me. “Are you here to help me with this aid-in-dying thing?” he asked. He was in his early 60s, thin and tired, but in no obvious distress. From my read of his chart, he met all criteria to qualify. Terminal illness, decision-making capacity, ability to self-administer the medications. And he had made the requisite first request for the drugs two weeks earlier, as procedure dictates.

When I asked why he wanted to end his life early, he shrugged. “I’m just sick of living.” I asked about any symptoms that might lie behind his request: unrelenting pain, nausea, shortness of breath. He denied them all. In palliative care, we are taught that suffering can take many forms besides the physical. I probed further and the floodgates opened.

He felt abandoned by his sister. She cared only about his Social Security payments, he said, and had gone AWOL now that the checks were being mailed to her house. Their love-hate relationship spanned decades, and they were now on the outs. His despair had given way to rage.

“Let’s just end this,” he said. “I’m fed up with my lousy life.” He really didn’t care, he added, that his sister opposed his decision.

His request appeared to stem from a deep family wound, not his terminal illness. I felt he wanted to punish his sister, and he had found a way to do it.

At our second meeting, with more trust established, he issued a sob, almost a keening. He felt terrified and powerless, he said. He didn’t want to live this way anymore.

I understood. I could imagine my own distress in his condition — being shuttled like a bag of bones between the nursing home and the hospital. It was his legal right to request this intervention from me. But given how uncomfortable I was feeling, was it my right to say no?

In the end, he gave me an out. He agreed to a trial of antidepressants. “I’ll give you four weeks,” he said. He would follow up with his primary care doctor. I couldn’t help feeling relieved.

The patient died in a nursing home, of natural causes, three months later. And I haven’t had another request since. But the case left me worried. What if he had insisted on going through with it?

I’ll admit it: I want this option available to me and my family. I have seen much suffering around death. In my experience, most of the pain can be managed by expert care teams focusing on symptom management and family support. But not all. My mother is profoundly claustrophobic. I can imagine her terror if she were to develop Lou Gehrig’s disease, which progressively immobilizes patients while their cognitive faculties remain largely intact. For my mother, this would be a fate worse than death.

But still. I didn’t feel comfortable with the idea of helping to shorten the life of a patient because of depression and resentment. In truth, I’m not sure I am comfortable with helping to intentionally hasten anyone’s death for any reason. Does that make me a hypocrite?

I realized it was past time to sort out my thinking and turned to the de facto specialist in our area on this issue for counsel. Dr. Lonny Shavelson, an emergency medicine and primary care physician in Northern California, has been grappling with the subject for many years.

Given his interest in the topic, Dr. Shavelson felt a personal obligation to ensure that this new practice would be carried out responsibly after the law was passed. He founded Bay Area End of Life Options, a consulting group that educates physicians, advocates on patients’ behalf and prescribes the lethal concoction for some patients who meet the criteria for participation.

He has devised a process for his patients that not only adheres to the letter of the law, but goes far beyond it. His patient intake procedures are time-consuming and include a thorough history and physical, extensive home visits, a review of medical records and discussions with the patients’ doctors. He assesses the medical illness, the patient’s mental and emotional state and family dynamics.

He does not offer the medications to most of the patients who request them, sometimes because he deems them more than six months away from death or because he is worried that they have been coerced or because he believes that severe depression is interfering with their judgment. Since starting his practice, he has been approached by 398 patients. He has accepted 79 of those into his program and overseen ingestion and death for 48.

Dr. Shavelson’s careful observations have made him something of a bedside pharmacologist. In his experience, both the medications used and their dosages should be tailored to individual patients. While all patients enter a coma within minutes of ingesting the lethal cocktail, some deaths take longer, which can be distressing for the family and everyone else involved. One of his patients, a serious athlete, experienced a protracted death that Dr. Shavelson attributes to the patient’s high cardiac function. After that experience, Dr. Shavelson began to obtain an athletic history on every patient, and to add stronger medications if indicated.

In another patient, a mesh stent had been deployed to keep his intestines from collapsing. This stent prevented absorption in key areas, slowing the effect of the drugs and prolonging his death. Dr. Shavelson now routinely asks about such stents, something that a doctor less experienced in this process might miss.

Dr. Shavelson strives to mitigate all symptoms and suffering before agreeing to assist any patient in dying. He recounted many cases where patients no longer requested the medications once their quality of life improved. He counts these cases among his greatest successes. This demonstrates that his commitment is to the patient, not the principle.

When I asked Dr. Shavelson how he might have proceeded with my patient, he said he would have tried everything to relieve his distress without using the lethal medication. But if in the end the patient still wanted to proceed, he would have obliged, presuming his depression was not so severe as to impair his judgment. “I don’t have to agree with a patient’s reasoning or conclusions,” he said. “Those are hers to make, just as much as turning down chemotherapy or opting not to be intubated would be.”

I recently called colleagues at other hospitals to learn how they were handling this law. Like me, most of them hadn’t yet had much experience with it, but their involvement has mostly been positive. They described the few cases they had handled as “straightforward” — patients had carefully thought through the decision and had full family support. Most patients were enrolled in hospice care and supported throughout the ingestion process by trained personnel, almost always in their homes. My colleagues reported that they were free to opt out of the program if they were uncomfortable prescribing the medications. (Catholic health systems do not participate.)

Dr. Meredith Heller, director of inpatient palliative services at Kaiser Permanente San Francisco, said that while she understood my ambivalence, she herself felt significantly better about it than she had expected to. “Surprisingly, the vast majority of cases here have gone smoothly,” she told me.

A little over a year after the law went into effect, I am heartened by the positive responses I am hearing from my colleagues around the state. I am relieved that most cases seem straightforward. I am grateful that there are dedicated physicians like Dr. Shavelson willing to do this work. And I am reassured by the knowledge that patients in California now have the legal right to exercise this power when they feel there is no other path.

But I am also concerned. As our population continues to grow older and sicker and more people learn that this law exists, we will need a highly trained work force to steward patients through this process.

My patient deserved an evaluation by a physician like Dr. Shavelson, not someone like me, with no training in this area and ambivalence to boot. We need formal protocols, official procedures, outcome measurements, even a certificate of expertise issued by an oversight board. None of these are in place in any participating state, according to Dr. Shavelson. Yet all medical procedures require training. Why should one this weighty be an exception?

What about payment? Providers can bill for an office visit and the cost of the medication. But because there are no specific codes established for this procedure, reimbursement doesn’t come close to covering any effort to do this well. On top of that, many insurers won’t cover it, including federal programs like Medicare and the Veterans Health Administration.

And will this new “right” be available to everyone? Most communities won’t have a Dr. Shavelson, who offers steep discounts to low-income patients. I worry that public hospital patients like mine will not be able to afford this degree of care. These are inequities we must address.

THERE is another question I feel compelled to raise. Is medical aid in dying a reductive response to a highly complex problem? The over-mechanization of dying in America has created a public health crisis. People feel out of control around death. A life-ending concoction at the bedside can lend a sense of autonomy at a tremendously vulnerable time.

Yet medical aid in dying will help only a tiny fraction of the population. In 2016, just under four-tenths of 1 percent of everyone who died in Oregon used this option. Other approaches such as hospice and palliative care, proven to help a broad population of patients with life-limiting illness, are still underused, even stigmatized. The American Society of Clinical Oncology recommends that patients with advanced cancer receive concurrent palliative care beginning early in the course of disease. In my experience, far too few of these patients actually get it.

Unlike medical aid in dying, which will be used by a small proportion of the population, palliative interventions can improve the lives of many. My patient hadn’t been seen by a palliative care physician before he made his request. Although recommended, it isn’t required by law. And yet this input gave him another option.

Medical aid in dying is now the law in my home state, and I am glad for that. But our work is just beginning. We must continue to shape our policies and protocols to account for the nuanced social, legal and ethical questions that will continue to arise. We must identify the clinicians who are best qualified and most willing to do this work and then train them appropriately, not ad hoc. And we must remember that this is just one tool in the toolbox of caring for the dying — a tool of last resort.

Complete Article HERE!

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Learning how to handle grief in college harder than expected

Grieving for my brother was much harder away from home, but getting help and hearing other students with similar experiences helped me to become a more independent person.

By Laura Townsend

[B]y the time I got to college freshman year, I thought I had learned how to handle my grief. It had been three years since a car accident took the life of my adored big brother. For three years, I had been learning how to navigate a world in which he no longer existed. I was in constant pain, but I thought I had my grief under control.

A few months into my freshman year, I suffered a breakdown. Grieving for my brother in college was nothing like it was in high school. For the first time, I was forced to miss my brother entirely by myself. At home, my friends and family were grieving alongside me. I had been leaning on them so heavily that when they were no longer there to hold me up, I collapsed.

College is a difficult transition for everyone. We are forced to adjust to a new way of living while balancing coursework and a social life. In college, we learn who we are separately from those who raised us. Everything around us feels new, and yet our old problems still remain. They linger until we are forced to confront them.

As college stresses continued to build, I suppressed my feelings of grief and homesickness. A breakdown was inevitable.

The beginning of the breakdown occurred in the middle of one of my classes, when the professor played a disturbing video of a car accident. The video triggered memories I had been suppressing for months. I ran out of class crying.

After the incident in the classroom, I could no longer contain my grief. I began having panic attacks on a nearly daily basis. I missed classes and fought with friends.

After a particularly severe panic attack, I decided I needed help; I scheduled an appointment with University Counseling Service. At my first appointment, my therapist (a peppy graduate student) informed me that significant portions of the service’s clientele are grieving students. She hit me with a cliché: “You are not alone,” which I actually really needed to hear.

Grieving in college can feel isolating. At home, there were pictures of my brother on every wall of the house. My parents were always talking about him. Even my friends would recall stories from time to time. At college, nobody knew who he was. New friends did not want to discuss deeply personal matters right away. I did not want to be a burden to them.

What I failed to realize freshman year, however, was that many of my friends were dealing with their own grief at the same time. Many of them were struggling as much as I was.

Grief is an all-consuming feeling that never goes away. As long as my heart is beating, I will mourn the loss of my brother. He is always on my mind. Grieving in college has been an entirely different process than grieving at home. It is never easy, but once I learned to open up and let myself feel sad when I needed to, it became manageable. Learning how to grieve in college was an essential step to learning how to be an independent person.

Complete Article HERE!

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A good death

It would be foolish to think that we can control when our time is up. But neither should we face that moment unprepared. Not only for our sake, but for the people we leave behind.
 

By Vivien Shiao

[T]HE only certainty in life is death. But this is not something we like to think about – not when we are at our prime, our careers powering ahead, and the future bright. In fact, as you flip through the papers, about to tuck into a nice brunch with loved ones, you may even question why we want to mention it at all, potentially casting a pall on a perfectly good weekend. The reality is, there are just as many ways to die as there are ways to live. It can come like a thief in the night, sudden and without warning. For others, death comes as an impending train – relentless and closing in. Or sometimes, long after the body and mind have withered, death still does not come. As the ultimate human experience we all cannot run away from, it matters how we approach death. How we live the rest of our days depends on it.

What a good death means

A good death is hard to define. In many instances, the process of dying is described as a battle to be won, a fight between life and death. Rage, rage against the dying of the light, wrote poet Dylan Thomas.

But doctors intimate with death tell The Business Times that this struggle to extend life without thought to its quality is not necessarily what people want.

Dr Ng Wai Chong, chief of clinical affairs, Tsao Foundation, is a physician who is well acquainted with death. To him, a good death is the ultimate challenge. “It is one with a good mind, one that is peaceful, one that has closure. All the big questions in life have been answered… To prepare for a good death, you need to live a life that is responsible and with a clear conscience.”

Those who are prepared are typically contented, accepting and also grateful, says Dr Ng. For Dr Neo Han Yee, a palliative care consultant at Tan Tock Seng Hospital, a good death means a life of little regret or guilt, and being at peace knowing that loved ones will be taken care of. “It is difficult to achieve zero suffering, but on a spiritual aspect, these people feel that their lives have been worthwhile and they are ready to move on.”

A good death also has a social dimension, he explains: People with the “foresight” to invest their time and effort in relationships, in turn, receive support in their last days from family and loved ones. They are the ones with the wisdom to prepare early and help family members cope with their impending passing, he says.

Planning for the end

A good death doesn’t come by accident. It takes planning and preparation in many aspects – financial, legal, psychological, social, medical, and even spiritual – to make it happen. This is not just to ease one’s passage, but also to ease the burden on loved ones.

If the end-of-life process is a long drawn out one, the stakes are even higher. For example, if you become mentally incapacitated due to your illness and your children have no idea what your last wishes are, they could end up spending tens of thousands trying to treat you, in the hopes of extending life.

Not only could this increase your distress in your last days (though with no ill intention), the lack of clarity is likely to result in conflict among family members, and financial issues. Such a scenario may seem like the stuff of TV dramas, but it is a lot more common than you think, according to experts that BT spoke to. So, rather than wait for a crisis to strike, it may be prudent to plan ahead when things are hunky dory and you still have sound presence of mind. This could prevent unnecessary expenditure, heartache and headache for others further down the road.

Alfred Chia, CEO of financial advisory firm SingCapital, says that procrastination is one of the biggest mistakes that people tend to make regarding their finances. He is also the co-author of Last Wishes: Financial Planning, Will Planning and Funeral Planning in Singapore. “Planning for death should not be viewed as taboo or negative. In fact, it is a celebration of our life in this world,” Mr Chia says. He advises people to plan for retirement early to avoid “huge financial stress” later. Work out the amount needed each month for the ideal lifestyle post-retirement and the number of years you expect to provide for, he says. The right insurance policy can also help achieve your goals in a more cost-effective way, he adds.

Other mistakes he has observed others make is to fall prey to financial scams, and to invest in instruments that don’t suit their risk profile. He says: “There is a saying that when I pass on, I have not spent all my money. While that is a regret, it will be even more regretful if I have spent all my money, and yet am still alive with no capacity to earn an income.”

On the flipside of the coin, those who are extremely wealthy have even more compelling reasons to plan. To manage their wealth, they often turn to family offices – private wealth management advisory firms.

Mr Chia says that planning ahead for the wealthy can help keep family unity and prevent squabbles over inheritance. Family offices can also spread the distribution of wealth over an extended period so that the children won’t be “spoilt” with the sudden wealth, he adds.

Working with the law

When life ends, a host of issues crop up for loved ones, that can only be properly resolved within the confines of the law.

Most people know the significance of wills, but there are other considerations such as trusts and Lasting Power of Attorney, or the LPA.

A will is for the distribution of assets after one’s death, while an LPA is for the appointment of a person or persons (known as the donee) to make decisions for you on “health and wealth” before your death.

Doris Chia, litigation partner of David Lim & Partners, saysthat most people with elderly parents would want to do an LPA, so that they are able to access their parents’ bank accounts or assets to pay for their parents’ medical bills when their parents are unable to do so.

One thing to bear in mind is that the LPA only kicks in in the event of loss of mental capacity. So although you may do an LPA now, it may only be valid decades later, says Ms Chia. Or, it may never come into effect at all if the person who appointed the LPA remains mentally healthy.

Ms Chia also warns that the LPA comes under the Mental Capacity Act, which means it can only be made by a person of sound mind. Once there is an onset of a mental issue such as Alzheimer’s or senile dementia, it will be too late to make one.

The consequences can be serious. She cites an example where the mother of one client became mentally incapacitated and then fell ill, and the client was unable to sell a private property that she owned jointly with her mother.

Without an LPA, she had to apply to the court for deputyship to sell the property, to fund her mother’s medical needs. This process cost “tens of thousands of dollars”, according to Ms Chia.

“A person applying to be a deputy has to file several affidavits in court. This also costs money. You can save all this heartache now by doing an LPA. What’s the harm?”

According to the Office of the Public Guardian, the fee for LPA certificate issuers ranges from S$25 for a general practitioner to S$500 for a psychiatrist – still much more affordable than applying for deputyship.

Another group of people that Ms Chia urged to apply for LPAs are singles, and people who identify as LGBT (lesbian, gay, bisexual, transgender).

“For LGBT people, it is essential to do an LPA as it allows the partner – and not family members, if that is your choice – to make decisions on your personal welfare and property and affairs. Otherwise, legally, your partner has no say over such matters in such circumstances.”

Where there’s a will

Aside from the LPA, the will is another matter to be considered seriously. For non-Muslims who die without making a will, distribution of assets will be according to the Intestate Succession Act. For example, the surviving spouse will get 50 per cent of assets, with the rest divided among their children. For singles, the assets will go to their living parents. Otherwise, it will go to their siblings.

Muslims follow the Muslim intestacy law, the faraid. Only one-third of their assets can be willed away, with the rest distributed according to the faraid.

For those who don’t want to follow the standard distribution rules, making a will is vital. Some people, Ms Chia has observed, don’t trust their spouses too much and prefer to give everything to their children.

The existence of a will gives much quicker access to assets. For people who die with a will in place, a Grant of Probate allows the process to move much faster compared to the Letter of Administration for those who die without a will, says Ms Chia.

Even so, the existence of a will is no guarantee that it will be carried out. It may be hidden, or lost, or challenged. It’s important that the executors of the will – those who will administer and distribute your estate upon death – know where the will is, together with proper instructions on bank accounts, assets and insurance policies.

Details make all the difference. “I always say to my clients, do a will that can last many years,” says Ms Chia. “Don’t say Property A goes to one son, and Property B goes to another son. If you sell Property B and you forget to amend your will, one son will end up with nothing.”

Instead, she recommends that the executor be instructed to sell all assets and for the proceeds to be distributed according to percentages.

State of mind and health also matter. It’s better to make a will when you are healthy and of sound mind so that there will be no dispute later, Ms Chia advises. She observes that most people do not think about end-of-life decisions until they are forced upon them. But wills are sometimes contested if the person had made it when they were very old or very sick.

Giving the assets in a trust, as opposed to in a will, prevents challenges by family members, says Ms Chia. Often used for succession planning, a trust protects family assets for the good of beneficiaries who are either too young, financially immature or vulnerable until they either come of age or reach a certain maturity.

The assets put into a trust are a gift made in a person’s lifetime, and not upon his death. Once the assets vest in the trust, they no longer belong to him. The assets will not form part of his assets at the point of his death and hence, a trust cannot be contested, explains Ms Chia.

Having a trust could also mitigate the heavy taxes applicable to estate duty in certain overseas jurisdictions, or safeguard assets from the possibility of lawsuits by creditors.

One particular group that can benefit are family members with special needs, she adds. Setting up a trust with that particular person as the beneficiary is a way to plan for a day when one can no longer care for him or her in person, says Ms Chia.

A conversation about care

Perhaps, due to cultural mores, or perhaps the need to “protect” their parents, some children refuse to even talk about death with their elderly parents, even as it is looming.

Sometimes, the severity of their condition – or even the amount of time they have left – is deliberately kept from them by well-meaning family members, thinking that mentioning it will result in emotional instability.

TTSH’s Dr Neo observes: “Quite often, when a person is so sick, family members are pushed into a corner. They don’t know how to broach the topic.”

But doctors and healthcare professionals are actively trying to change this mindset with the introduction of the Advanced Care Plan (ACP). It is a voluntary discussion on future care preferences between an individual, his or her family and healthcare providers.

While not legally binding, it describes the type of care the person would prefer, if he or she is to become very sick and unable to make healthcare decisions in the future. Compared to the Advanced Medical Directive (AMD) which has a very narrow scope of criteria, the beauty of the ACP is in the conversation, says Dr Ng from the Tsao Foundation.

“The goal is to respect a person’s rights to self-determination. It encourages people to think about existential issues and helps the people conducting it to get into the value system of the person. Scenarios might change, but the general drift is there, so it will bring some clarity.”

Otherwise, caregivers who don’t know what patients want will end up going on the “path of least resistance”, which often means over-investigation of treatment, says Dr Ng.

An AMD allows you to register in advance your wishes not to have any extraordinary life-sustaining treatment to prolong life in the event that you become terminally ill and unconscious and where death is imminent. However, the definition of a “terminal illness” is extremely specific.

Among the wealthier and more educated patients or caregivers, Dr Ng has also observed a sub-group of people who approach medical conditions with a consumer attitude. Instead, he advocates having a doctor as a lohealth partner that you can trust, with a relationship built over a long time.

“I see people over-treat, over-investigate, but a primary care doctor is a better way of managing health. The person can help you clarify your purpose, your goals and the best strategy to proceed. Along the way, he can even do your ACP with you and be a facilitator when it comes to complex family dynamics.”

Beginning with the end

It is not just the medical aspect of health that people should take into account in their last days. There’s also the need to think about the social, emotional and psychological state of the person.

TTSH’s Dr Neo explains that the intensity of pain is often heavily coloured by one’s emotions. To cope with the end of life, people must build up psychological preparedness and fortitude, he says.

To him, thinking about death is constructive for thinking of life.

He observes: “Life is impermanent. You treasure people around you a lot more, you don’t waste time on things not worth it. You invest your time and effort in things worthwhile. You know how to value relationships much more, so when the time comes, you will be wiser as you have thought about it for a longer period of time.”

To build psychological maturity, he advises people to find a higher meaning in life, or a certain “calling”. Singaporeans tend to forget this, he notes, as we trudge along in our work and family life. Happiness is always projected in the future, instead of finding meaning in one’s current existence.

At the crux of it, people are too busy trying to beat each other or accrue financial gain to think about their own vulnerability, says Dr Neo.

“We live in a very illusory world. Only when a crisis hits then will the person be shaken and realise that life is fragile. If we don’t make mental, emotional and financial preparations before, you will find it hard to cope with the situation. We often underestimate how much we can prepare for death.”

No one can predict how much time we have left on this Earth. But if we put in as much thought about how we want to die as much as we think about how we want to live, surely our days here – limited though they may be – will be all the more precious and meaningful.

What you need to know

Will

  • Make sure your executors can find it. Ms Chia from David Lim & Partners cites an incident when a client made a will and was so secretive about it that his family couldn’t find it after his death. Be aware also that:
  • The will is sometimes contested if it was made at a time when the person was very old or ill.
  • CPF nominations and insurance policies with a named beneficiary are not part of the will.
  • Property – private or HDB – held in joint tenancy will automatically go to the survivor and hence cannot be part of the will for distribution.

Lasting Power of Attorney

  • Can only be used when the person who makes it (the donor) loses mental capacity and is only valid when the donor signs it when he is of sound mind.
  • One fear that people have about LPAs is that their children or donees can “help themselves” to the donor’s money when he or she is mentally incapacitated. Ms Chia debunks this: The money can only be used for the person’s welfare and medical expenses, and they will need to submit accounts to the Office of the Public Guardian, which serves to safeguard the interests of individuals who lack mental capacity and are vulnerable. In addition, more than one donee can be appointed to guard against dishonesty.

Trust

  • Anyone can set up a trust, says Ms Chia, but the costs are higher compared to arranging a will, or even setting up a private interest foundation, an entity which has the characteristics of both a company and a trust. “If the trust requires professional trust managers to make investment decisions or payments over several generations, this will cost money to administer. One needs to weigh the asset value against the cost of administering the trust,” she says.

Advance Medical Directive

  • Legally binding, but very narrow definition of “terminal illness”.
  • The AMD registry is only accessible during office hours. A doctor facing an emergency situation in the night will be unable to retrieve and verify an AMD. In fact, the AMD Act Section 15 has also been frequently interpreted as an offence for a doctor to query his patient about his AMD, according to Dr Neo of TTSH.

Advance Care Plan

  • Puts everyone on the same page, as it describes the type of care you would prefer, if you become unable to make healthcare decisions in the future. U For people with an ACP, the palliative care is much smoother for everyone involved as they don’t feel burdened with tough decisions, says Dr Ng of Tsao Foundation.
  • Not legally binding, and can be changed and reviewed, preferably with your primary care doctor or the main doctor tending to your advanced illness.

Complete Article HERE!