Category: Dying Wisely and Well

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People who see death and trauma each day ask: WGYLM?

UC San Diego Nurses use a clever guerrilla marketing campaign to get their colleagues thinking about advanced directives.

By Paul Sisson

[O]nly one in four Americans has written down their end-of-life wishes in case they end up in a hospital bed unable to communicate — despite high-profile cases over the years that have plainly shown the emotionally painful, expensive and sometimes lawsuit-ridden consequences of not making those wishes known in advance.

A group of UC San Diego nurses and doctors is engaged in an effort to increase that ratio, building a wide-reaching campaign that started with just five letters and a question mark.

Operating like a guerrilla marketing group, albeit with the approval of two key hospital bosses, they began posting signs at both UC San Diego hospitals and its seven largest clinics. The signs simply asked: “WGYLM?”

At first, they refused to explain to others what those letters meant.

“We considered that a great victory to hear, that we were irritating people with our message. It totally primed them to be on the lookout for the answer,” said Dr. Kyle Edmonds, a palliative care specialist.

In March, the letters expanded from a five-letter bloc into the question, “What Gives Your Life Meaning?” There were small signs spelling it out and seven chalkboard-size whiteboards with the question written in large letters at the top. A bucket full of Post-It notes and pens was attached to each whiteboard display and very quickly, people wrote and pasted up their responses.

God has figured into many of those messages. There also have been plenty of first names, heart outlines and attempts at humor — including a note that said, “cheese biscuits.”

Some have been quite dark. Politics have been mentioned as well, including President Donald Trump and his proposed border wall.

The next step for the project group, after thousands of notes had built up, was to add the kicker question: “Have you told anybody?”

It’s not enough to answer the question for yourself, said Edmonds and colleague Cassia Yi, a lead nurse at UC San Diego. They want people to tell their loved ones — in writing — what matters most to them, including how they want to be treated upon death or a medical emergency.

The campaign’s organizers hope that getting people to think about the best parts of their lives will provide an easier entry point for end-of-life planning.

The National Hospice and Palliative Care Organization recommends that everyone fill out an advance directive to make their wishes known in writing. Also often called “living wills,” these are witnessed legal documents that confer medical power of attorney to the person you designate if two doctors certify you are unable to make medical decisions.

Each state has its own form, and California’s asks people to specify whether they want a doctor to prolong their life if they have an irreversible condition “that will result in … death within a relatively short time or if they “become unconscious and, to a reasonable degree of medical certainty … not regain consciousness.”

This has been fraught territory, with many high-profile cases in the courts of distraught families wrestling over the decision to remove life support without any knowledge of the patient’s true wishes.

That includes the case of Terri Schiavo, who was left in a persistent vegetative state after a heart attack in 1990 caused severe brain damage. Her parents clashed with her husband, Michael, who asked the court to order her feeding tube removed in 1998 on grounds that she would not have wanted to live in such a state. Because she had no living will, it took years of very public legal wrangling before life support was disconnected on March 18, 2005.

Yi said she and other nurses feel this type of gut-wrenching stress every time a “Code Blue” page sends them scrambling for a patient who needs immediate resuscitation. Most of those patients don’t have wills or other written indications of their wishes in place, even though every patient is asked if they have an advance directive upon admission to the hospital.

“Advanced care planning wasn’t happening until people were coding out. There is nothing advanced about that,” Yi said.

Even before the current awareness campaign, Yi and her colleagues had worked with computer experts to add special categories to UC San Diego’s electronic medical records system that provide a single collection point for this kind of information. Previously, such details could be entered in dozens of different places, depending on the whims of whoever was taking notes at any given moment.

The project team also got the computer programmers to add a shortcut that allows caregivers to quickly access an advance-directive template.

Since the revamped system went live in February 2015, Edmonds said there has been a 469 percent increase in the number of patient charts that include some sort of information about end-of-life care.

But the project was not reaching every patient — or enough of the university’s medical staff.

Yi recalled a trip that some UC San Diego nurses took to the CSU Institute for Palliative Care at Cal State San Marcos. There, they saw “WGYLM?” signs and learned what the acronym meant. At the time, Cal State San Marcos was in the early stages of creating the “What Gives Your Life Meaning?” project.

The nurses thought: Why not adopt that program for UC San Diego as well? They liked that the operation could be rolled out in a provocative way and that it didn’t simply ask people to fill out advanced directives.

“It just makes an introduction in a more positive, intriguing light,” Yi said.

So far, nearly 1,300 employees in the UC San Diego Health system have taken the pledge to prepare their end-of-life documents and talk with their loved ones about these issues.

Sharon Hamill, faculty director of the palliative care institute at Cal State San Marcos, said the “WGYLM?” campaign has been held on that campus for three years in a row and has spread to sister campuses in Fresno and Long Beach.

She said the signature question was created by Helen McNeil, who direct’s the California State University system’s multi-campus palliative care institute, which is also housed on the San Marcos campus.

Hamill also said the message resonates strongly with people of multiple generations, including college students taking care of ailing grandparents or even parents.

“I love it when one of them stops me somewhere and tells me they saw one of the signs and were thinking about it all the way to class,” she added.

For more information about advance directives, go to nhdd.org.

Complete Article HERE!

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How to have a better death

Death is inevitable. A bad death is not

[I]N 1662 a London haberdasher with an eye for numbers published the first quantitative account of death. John Graunt tallied causes such as “the King’s Evil”, a tubercular disease believed to be cured by the monarch’s touch. Others seem uncanny, even poetic. In 1632, 15 Londoners “made away themselves”, 11 died of “grief” and a pair fell to “lethargy”.

Graunt’s book is a glimpse of the suddenness and terror of death before modern medicine. It came early, too: until the 20th century the average human lived about as long as a chimpanzee. Today science and economic growth mean that no land mammal lives longer. Yet an unintended consequence has been to turn dying into a medical experience.

How, when and where death happens has changed over the past century. As late as 1990 half of deaths worldwide were caused by chronic diseases; in 2015 the share was two-thirds. Most deaths in rich countries follow years of uneven deterioration. Roughly two-thirds happen in a hospital or nursing home. They often come after a crescendo of desperate treatment. Nearly a third of Americans who die after 65 will have spent time in an intensive-care unit in their final three months of life. Almost a fifth undergo surgery in their last month.

Such zealous intervention can be agonising for all concerned (see article). Cancer patients who die in hospital typically experience more pain, stress and depression than similar patients who die in a hospice or at home. Their families are more likely to argue with doctors and each other, to suffer from post-traumatic stress disorder and to feel prolonged grief.

What matters
Most important, these medicalised deaths do not seem to be what people want. Polls, including one carried out in four large countries by the Kaiser Family Foundation, an American think-tank, and The Economist, find that most people in good health hope that, when the time comes, they will die at home. And few, when asked about their hopes for their final days, say that their priority is to live as long as possible. Rather, they want to die free from pain, at peace, and surrounded by loved ones for whom they are not a burden.

Some deaths are unavoidably miserable. Not everyone will be in a condition to toast death’s imminence with champagne, as Anton Chekhov did. What people say they will want while they are well may change as the end nears (one reason why doctors are sceptical about the instructions set out in “living wills”). Dying at home is less appealing if all the medical kit is at the hospital. A treatment that is unbearable in the imagination can seem like the lesser of two evils when the alternative is death. Some patients will want to fight until all hope is lost.

But too often patients receive drastic treatment in spite of their dying wishes—by default, when doctors do “everything possible”, as they have been trained to, without talking through people’s preferences or ensuring that the prognosis is clearly understood. Just a third of American patients with terminal cancer are asked about their goals at the end of life, for example whether they wish to attend a special event, such as a grandchild’s wedding, even if that means leaving hospital and risking an earlier death. In many other countries, the share is even lower. Most oncologists, who see a lot of dying patients, say that they have never been taught how to talk to them.

This newspaper has called for the legalisation of doctor-assisted dying, so that mentally fit, terminally ill patients can be helped to end their lives if that is their wish. But the right to die is just one part of better care at the end of life. The evidence suggests that most people want this option, but that few would, in the end, choose to exercise it. To give people the death they say they want, medicine should take some simple steps.

More palliative care is needed. This neglected branch of medicine deals with the relief of pain and other symptoms, such as breathlessness, as well as counselling for the terminally ill. Until recently it was often dismissed as barely medicine at all: mere tea and sympathy when all hope has gone. Even in Britain, where the hospice movement began, access to palliative care is patchy. Recent studies have shown how wrongheaded that is. Providing it earlier in the course of advanced cancer alongside the usual treatments turns out not only to reduce suffering, but to prolong life, too.

Most doctors enter medicine to help people delay death, not to talk about its inevitability. But talk they must. A good start would be the wider use of the “Serious Illness Conversation Guide” drawn up by Atul Gawande, a surgeon and author. It is a short questionnaire designed to find out what terminally ill patients know about their condition and to understand what their goals are as the end nears. Early research suggests it encourages more, earlier conversations and reduces suffering.

These changes should be part of a broad shift in the way health-care systems deal with serious illness. Much care for the chronically ill needs to move out of hospitals altogether. That would mean some health-care funding being diverted to social support. The financial incentives for doctors and hospitals need to change, too. They are typically paid by insurers and governments to do things to patients, not to try to prevent disease or to make patients comfortable. Medicare, America’s public health scheme for the over-65s, has recently started paying doctors for in-depth conversations with terminally ill patients; other national health-care systems, and insurers, should follow. Cost is not an obstacle, since informed, engaged patients will be less likely to want pointless procedures. Fewer doctors may be sued, as poor communication is a common theme in malpractice claims.

One last thing before I go
Most people feel dread when they contemplate their mortality. As death has been hidden away in hospitals and nursing homes, it has become less familiar and harder to talk about. Politicians are scared to bring up end-of-life care in case they are accused of setting up “death panels”. But honest and open conversations with the dying should be as much a part of modern medicine as prescribing drugs or fixing broken bones. A better death means a better life, right until the end.

Complete Article HERE!

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A New Life for Dying:

Death Doulas and the Death Positive Movement

By Kristi Pahr

[O]ur great grandparents and their great grandparents and their great grandparents would have thought the way we die is strange. They died at home, we die in hospitals and nursing homes. They died surrounded by loved ones, we die surrounded by doctors and nurses. They died where they lived, we die where we die. Up until the mid-1800s, death was an everyday part of life. Members of multigenerational households, which were the norm, lived together and died together. Whether it came quickly or took its time, death happened in the home, just like birth. Just like life.

And when they died, their loved ones held space for them in their homes. Family and friends grieved them and remembered them and loved them through the transition and beyond. Today, though, death is scary. Death isn’t part of life anymore. We’ve removed it from the home and tucked it away in antiseptic, clinical, brightly lit spaces and it’s become foreign to us.

But, death doesn’t have to be frightening. Or solitary. Or clinical. Death can be peaceful and calm, serene and sacred. There is a movement of people taking death back. Pulling it from the cold, harsh confines of the hospital room, and bringing it back into the home and into the world of the living. Death doulas are on the forefront of the fight to reclaim grief and demystify death.

Death doulas, or spiritual midwives, serve a similar function to birth doulas or midwives, but on the other end of the spectrum. A birth doula helps the mother bring life into the world, a death doula helps when life is ready to depart the world. They provide support for the dying and the family, creating space, answering questions, asking questions and being a calm and loving presence during a time of great change.

Janie Rakow, president of INELDA, the International End of Life Doula Association, describes a death doula as, “… someone who acts as a guide and companion through the end phase of an illness. This work can start as soon as someone is admitted to hospice.” She says, “the doulas work with the dying person and their loved ones through the final dying process and into the early grieving stages afterward.”

Rakow explained that INELDA’s doula’s work generally runs in three stages. They begin by discussing death with the patient and the family, openly and honestly, allowing them to explore their feelings and their fears. The doula helps to establish what Rakow describes as “personalized, guided visualizations” and the dying’s preferences in music and readings are also defined. A vigil plan is also worked out during this time.

The second stage begins as the patient begins to actively die. The doulas hold space created during the establishment of the vigil plan and allow family to take breaks as needed, knowing that any changes will be relayed immediately. They don’t have to be afraid of not being present because the doula is trained to recognize the different stages and hallmarks of the dying process and can alert the family as things change. The doula is present during the death and stays with the family, providing comfort and support, until after the funeral home has come.

During the third stage, after the death, the doula helps the family to process their grief and answers any questions or concerns the family may be holding onto from the death.

While the term “death doula” is new, the concept of holding death and grief as sacred is not. Death becoming medicalized and moving into hospitals played a big part in it becoming something that families and loved ones feared. Grief over the loss of loved ones, the period of mourning after a death, were, until relatively recently, significant and special things. Now, however, we are encouraged to hide our grief, to consider it a messy and private thing, when, for generations past, it was a point of community. People were not expected to grieve alone when their loved ones died. They were lifted up within their communities and mourning was neither shameful nor private. They were given time and space to mourn.

Another group whose aim is to re-center grief and take back ownership of death is the death positive movement, begun by mortician Caitlin Doughty. She started The Order of the Good Death in response to the culture of fear that surrounds modern death. The group’s mission is to break down that fear and make death a part of life. According to The Order of the Good Death, the group is comprised of funerary professionals, academics and artists who strive “to bring death awareness and acceptance into a culture that is all too often death phobic.”

Both of these groups are working hard to bring death back into life and remove the stigma and fear modern society has pinned to the natural process. Both groups advocate for death as a sacred experience, a personal experience, a life experience.

By utilizing the services of a death doula, loss and grief can be refocused on the love and the sacred, instead of on fear and negative emotions. By joining, or just acknowledging, the death positive movement, people can help to de-stigmatize the process of dying, which in the end will make the idea of death much easier for everyone to digest.

Complete Article HERE!

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Seattle chaplain: Far too few know about Washington’s Death with Dignity Act, end of life options

Washington’s Death with Dignity act was passed in 2008.

By Josh Kerns

[I]t’s a subject few are willing to talk about: our own deaths.

And even though Washington is one of just six states where doctor-assisted death is legal, very few utilize it, and many know nothing about their options. But a dedicated group of volunteers is working tirelessly to change that.

Retired Seattle chaplain Trudy James says death has always been a part of her life.

“My first baby died at 4 days old, my father took his own life when I was 35, and I became a hospital chaplain when I was 47,” she said.

As a chaplain, she was at the forefront of the AIDS epidemic, working daily with people young and old facing death. She helped build a community of volunteers to support them.

“They were suffering and they knew that they were going to die,” James said. “And what we learned is when they had people around them and things to look forward to and people to talk to, they lived longer and they died better deaths.”

That led James to create the Heartwork end-of-life planning groups.

She began offering workshops and training volunteers in congregations, senior centers, private homes and elsewhere to help raise awareness about the options, and to help people take control of their own end-of-life decisions.

Death with Dignity

Voters approved Washington’s Death with Dignity Act in 2008. It allows terminally ill adults with six months or less left to live to request lethal doses of medication from a doctor, refuse life-saving medical treatment like resuscitation, and to stopping eating and drinking to hasten death.

There are a number of steps involved in this, such as exams and repeat oral and written requests to a doctor who chooses to prescribe the medication.

“A lot of people don’t even know we have this new law in Washington. And if they do know or if they voted for it, they have no idea how to access it or what it would mean or what it offers them,” she said.

There are plenty of people and organizations opposed to doctor-assisted death.

Many religious groups and right-to-life advocates argue doctor-assisted death interferes with God’s will. Doctors in some religious-based hospitals are prohibited by their employers from discussing the law.

After seeing scores of people die extremely painful deaths over the years, James couldn’t disagree more.

“I say dying in intensive care with machines hooked up to all of you and not being able to speak to your loved ones isn’t really a natural death,” she said. “It’s prolonging dying, but it’s not prolonging living.”

This is not suicide

One thing James and other end-of-life advocates underscore is that they are not promoting or encouraging death – just awareness of the options. Namely, that those suffering from painful, degenerative conditions — ranging from cancer to ALS — can hasten their death.

And these advocates emphasize that this is not doctor-assisted suicide. They argue the word suicide should only describe those physically well enough who would otherwise continue living.

“These are people who are going to die anyway and they’re just reducing suffering for themselves and their family,” she said. “That seems to me what God would want.”

James’ experiences with her ministry and the workshops inspired her to produce a short film she could show at senior centers, hospices and elsewhere.

What started as a 12-minute, simple short is now a full-fledged 30-minute documentary called “Speaking of Dying.” It’s basically people speaking from the heart about their own experiences with illness and death.

James says even though people don’t want to think or talk about death, when they can learn their options and plan for it, it can bring incredible peace of mind. And she says it’s something we should all be thinking about and planning for with our families, friends or doctors sooner rather than later.

“There’s nothing that says you’re not going to die until you’re 75 or 80,” James said. “Many people die young and it’s so comforting if they’ve done some work with them and talk with them and tell them what they want.”

James will be hosting a special screening of the “Speaking of Dying” on Saturday, April 29 at Seattle Baptist Church. The goal is to celebrate the film’s second anniversary and raise money to help show and distribute it to more broadly.

“There is always grief when someone you love dies,” she said. “But I say it’s better when they’ve had a peaceful ending.”

Complete Article HERE!

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For Some, Pre-Hospice Care Can Be A Good Alternative To Hospitals

At Gerald Chinchar’s home in San Diego, Calif., Nurse Sheri Juan (right) checks his arm for edema that might be a sign that his congestive heart failure is getting worse.

By Anna Gorman  

[G]erald Chinchar, a Navy veteran who loves TV Westerns, isn’t quite at the end of his life, but the end is probably not far away. The 77-year-old’s medications fill a dresser drawer, and congestive heart failure puts him at high risk of emergency room visits and long hospital stays. He fell twice last year, shattering his hip and femur, and now gets around his San Diego home in a wheelchair.

Above all, Chinchar hopes to avoid another long stint in the hospital. He still likes to go watch his grandchildren’s sporting events and play blackjack at the casino.

“If they told me I had six months to live, or [could instead] go to the hospital and last two years, I’d say leave me home,” he said. “That ain’t no trade for me.”

Most aging people would choose to stay home in their last years of life. But for many, it doesn’t work out: They go in and out of hospitals, getting treated for flare-ups of various chronic illnesses. It’s a massive problem that costs the health care system billions of dollars and has galvanized health providers, hospital administrators and policymakers to search for solutions.

Sharp HealthCare, the San Diego health system where Chinchar receives care, has devised a way to fulfill his wishes and reduce costs at the same time. It’s a pre-hospice program called Transitions, designed to give elderly patients the care they want at home and keep them out of the hospital.

Social workers and nurses from Sharp regularly visit patients in their homes to explain what they can expect in their final years, help them make end-of-life plans and teach them how to better manage their diseases. Physicians track their health and scrap unnecessary medications.

All the medicine Chinchar takes for his congestive heart failure and other ailments fills a kitchen drawer. “What we like to do as a palliative care program is streamline your medication list,” the nurse explained during a home visit. “They may be doing more harm than good.”

Unlike hospice care, patients in this program don’t need to have a prognosis of six months or less to live, and they can continue getting treatment that is aimed at curing their illnesses, not just treating symptoms.

Before the Transitions program started, the only option for many patients in a health crisis was to call 911 and be rushed to the emergency room. Now, they can get round-the-clock access to nurses, one phone call away.

“Transitions is for just that point where people are starting to realize they can see the end of the road,” said Dr. Dan Hoefer, a San Diego palliative care and family practice physician, and one of the creators of the program. “We are trying to help them through that process,” he said, “so it’s not filled with chaos.”

The importance of programs like Transitions is likely to grow in coming years as 10,000 baby boomers — many with multiple chronic diseases — turn 65 every day. Transitions was among the first of its kind, but several such programs, formally known as home-based palliative care, have since opened around the country. They are part of a broader push to improve people’s health and reduce spending through better coordination of care and more treatment outside hospital walls.

But a huge barrier stands in the way of pre-hospice programs: There is no clear way to pay for them. Health providers typically get paid for office visits and procedures, and hospitals still get reimbursed for patients in their beds. The services provided by home-based palliative care don’t fit that model.

In recent years, however, pressure has mounted to continue moving away from traditional payment systems. The Affordable Care Act has established new rules and pilot programs that reward the quality of care, rather than the quantity. Those changes are helping to make home-based palliative care a more viable option.

In San Diego, Sharp’s palliative care program has a strong incentive to reduce the cost of caring for its patients, who are all in Medicare managed care. The nonprofit health organization receives a fixed amount of money per member each month, so it can pocket what it doesn’t spend on hospital stays and other costly medical interventions.

‘Something that works’

Palliative care focuses on relieving patients’ stress, pain and other symptoms as their health declines, and it helps them maintain their quality of life. It’s for people with serious illnesses, such as cancer, dementia and heart failure. The idea is for patients to get palliative care and then move into hospice care, but they don’t always make that transition.

The 2014 report “Dying in America,” by the Institute of Medicine, recommended that all people with serious advanced illness have access to palliative care. Many hospitals now have palliative care programs, delivered by teams of social workers, chaplains, doctors and nurses, for patients who aren’t yet ready for hospice. But until recently, few such efforts had opened beyond the confines of hospitals.

Kaiser Permanente set out to address this gap nearly 20 years ago, creating a home-based palliative care program that it tested in California and later in Hawaii and Colorado. Two studies by Kaiser and others found that participants were far more likely to be satisfied with their care and more likely to die at home than those not in the program. (Kaiser Health News is not affiliated with Kaiser Permanente.)

One of the studies, published in 2007, found that 36 percent of people receiving palliative care at home were hospitalized in their final months, compared with 59 percent of those getting standard care. The overall cost of care for those who participated in the program was a third less than for those who didn’t.

“We thought, ‘Wow. We have something that works,'” said Susan Enguidanos, an associate professor of gerontology at the University of Southern California’s Leonard Davis School of Gerontology, who worked on both studies. “Immediately we wanted to go and change the world.”

But Enguidanos knew that Kaiser Permanente was unlike most health organizations. It was responsible for both insuring and treating its patients, so it had a clear financial motivation to improve care and control costs. Enguidanos said she talked to medical providers around the nation about this type of palliative care, but the concept didn’t take off at the time. Providers kept asking the same question: How do you pay for it without charging patients or insurers?

“I liken it to paddling out too soon for the wave,” she said. “We were out there too soon. … But we didn’t have the right environment, the right incentive.”

A bold idea, rooted in experience

Hoefer is a former hospice and home health medical director and has spent years treating elderly patients. He learned an important lesson when seeing patients in his office: Despite the medical care they received, “they were far more likely to be admitted to the hospital than make it back to see me.”

Doctors, nurses and social workers meet bimonthly to discuss patient cases for the Sharp HealthCare Transitions program in San Diego.

Doctors, nurses and social workers meet bimonthly to discuss patient cases for the Sharp HealthCare Transitions program in San Diego.

When his patients were hospitalized, many would decline quickly. Even if their immediate symptoms were treated successfully, they would sometimes leave the hospital less able to take care of themselves. They would get infections or suffer from delirium. Some would fall.

Hoefer’s colleague, Suzi Johnson, a nurse and administrator in Sharp’s hospice program, saw the opposite side of the equation. Patients admitted into hospice care would make surprising turnarounds once they stopped going to the hospital and started getting medical and social support at home, instead. Some lived longer than doctors had expected.

In 2005, the pair hatched a bold idea: What if they could design a home-based program for patients before they were eligible for hospice? Thus, Transitions was born. They modeled their new program in part on the Kaiser experiment, then set out to persuade doctors, medical directors and financial officers to try it. But they met resistance from physicians and hospital administrators who were used to getting paid for seeing patients.

“We were doing something that was really revolutionary, that really went against the culture of health care at the time,” Johnson said. “We were inspired by the broken system and the opportunity we saw to fix something.”

Despite the concerns, Sharp’s foundation board gave the pair a $180,000 grant to test out Transitions. And in 2007, they started with heart failure patients and later expanded the program to those with advanced cancer, dementia, chronic obstructive pulmonary disease and other progressive illnesses. They started to win over some doctors who appreciated having additional eyes on their patients, but they still encountered “some skepticism about whether it was really going to do any good for our patients,” said Dr. Jeremy Hogan, a neurologist with Sharp. “It wasn’t really clear to the group … what the purpose of providing a service like this was.”

Nevertheless, Hogan referred some of his dementia patients to the program and quickly realized that the extra support for them and their families meant fewer panicked calls and emergency room trips.

Hoefer said doctors started realizing home-based care made sense for these patients — many of whom were too frail to get to a doctor’s office regularly. “At this point in the patient’s life, we should be bringing health care to the patient, not the other way around,” he said.

Across the country, more doctors, hospitals and insurers are starting to see the value of home-based palliative care, said Kathleen Kerr, a health care consultant who researches palliative care.

“It is picking up steam,” she said. “You know you are going to take better care of this population, and you are absolutely going to have lower health care costs.”

Nurse Sheri Juan and social worker Mike Velasco, take health care to the Chinchars.

Providers are motivated in part by a growing body of research. Two studies of Transitions in 2013 and 2016 reaffirmed that such programs save money. The second study, led by outside evaluators, showed it saved more than $4,200 per month on cancer patients and nearly $3,500 on those with heart failure.

The biggest differences occurred in the final two months of life, said one of the researchers, Brian Cassel, who is palliative care research director at the Virginia Commonwealth University School of Medicine in Richmond.

A home visit tailored to each family

Nurse Sheri Juan and social worker Mike Velasco, who both work for Sharp, walked up a wooden ramp to the Chinchars’ front door one recent January morning. Juan rolled a small suitcase behind her containing a blood pressure cuff, a stethoscope, books, a laptop computer and a printer.

Gerald Chinchar’s wife, Mary Jo (right), told the visiting nurse she especially appreciates getting the advice about what her husband should eat and drink. He doesn’t always listen to his wife, Mary Jo said. “It’s better to come from somebody else.”

Late last year, Gerald Chinchar’s doctor recommended he enroll in Transitions, explaining that his health was in a “tenuous position.” Chinchar has nine grandchildren and four great-grandchildren. He has had breathing problems much of his life, suffering from asthma and chronic obstructive pulmonary disease — ailments he partly attributes to the four decades he spent painting and sandblasting fuel tanks for work. Chinchar also recently learned he had heart failure.

“I never knew I had any heart trouble,” he said. “That was the only good thing I had going for me.”

Gerald Chinchar’s wife, Mary Jo (right), told the visiting nurse she especially appreciates getting the advice about what her husband should eat and drink. He doesn’t always listen to his wife, Mary Jo said. “It’s better to come from somebody else.”

Now he’s trying to figure out how to keep it from getting worse: How much should he drink? What is he supposed to eat?

That’s where Juan comes in. Her job is to make sure the Chinchars understand Gerald’s disease so he doesn’t have a flare-up that could send him to the emergency room. She sat beside the couple in their living room and asked a series of questions: Any pain today? How is your breathing?

Juan checked his blood pressure and examined his feet and legs for signs of more swelling. She looked through his medications and told him which ones the doctor wanted him to stop taking.

“What we like to do as a palliative care program is streamline your medication list,” she told him. “They may be doing more harm than good.”

His wife, Mary Jo Chinchar, said she appreciates the visits, especially the advice about what Gerald should eat and drink. Her husband doesn’t always listen to her, she said. “It’s better to come from somebody else.”

Growing acceptance of palliative care

Chinchar (left) is now 77. He told nurse Sheri Juan he never expected to live into old age. In his family, he said, “you’re an old-timer if you make 60.”

Outpatient palliative care programs are cropping up in various forms. Some new ones are run by insurers, others by health systems or hospice organizations. Others are for-profit, including Aspire Health, which was started by former senator Bill Frist in 2013.

Sutter Health operates a project called Advanced Illness Management to help patients manage symptoms and medications and plan for the future. The University of Southern California and Blue Shield of California recently received a $5 million grant to provide and study outpatient care. “The climate has changed for palliative care,” said Enguidanos, the lead investigator on the USC-Blue Shield project.

Ritchie said she expects even more home-based programs in the years to come. “My expectation is that much of what is being done in the hospital won’t need to be done in the hospital anymore and it can be done in people’s homes,” she said.

Challenges remain, however. Some doctors are unfamiliar with the approach, and patients may be reluctant, especially those who haven’t clearly been told they have a terminal diagnosis. Now, some palliative care providers and researchers worry about the impact of President Donald Trump’s plans to repeal the Affordable Care Act and revamp Medicare — efforts that seem to be back in play.

Gerald Chinchar, who grew up in Connecticut, said he never expected to live into old age. In his family, Chinchar said, “you’re an old-timer if you make 60.”

Chinchar said he gave up drinking and is trying to eat less of his favorite foods — steak sandwiches and fish and chips. He just turned 77, a milestone he credits partly to the pre-hospice program.

“If I make 80, I figured I did pretty good,” he said. “And if I make 80, I’ll shoot for 85.”

Complete Article HERE!

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How to Live When You’re Dying

Embrace the idea of death for a better life.

By Wesley Baines

Death.

It’s a concept that few wish to dwell on, but one that will eventually become a reality for each of us. For some of us, it comes rushing up sooner than we’d like, and suddenly the hands of the clock are moved up to five minutes till midnight. For others, the hands move at their normal pace, but our minds linger on what those final moments will hold.

The truth is that we are all dying. Every last one of us. But by learning to accept death, by allowing the ticking clock to drive us to greater heights rather than to deeper despair, we can truly live. And in choosing to live in the face of death, we not only improve the time we have left, but also set an example for others so that they might do the same.

Whether you’ve recently found your own clock unexpectedly moved forward or if you simply find your eventual end more discomforting than you’d like, there are lessons to learn here that will make the remainder of your life not mere a series of days, but beautifully alive.

Accept and Acknowledge

As a culture, we don’t like to talk about death—it’s one of our staunchest taboos. But the problem with this is that we don’t deal with it. We pretend it doesn’t exist, that the clock isn’t ticking at all.

And so because we don’t deal with death in a meaningful way, we become divided into two camps—those who are paralyzed by the fear of death, and those who feel it will never happen to them. Both views are mistakes.

Those who are terrified of death are limited by it. They are confined to what is safe, and live lives of mental agony. Those who feel invincible, on the other hand, lack the motivation that only an awareness of our limited time can bring.

But when we embrace death, when we acknowledge it by openly talking about it, and when we can accept that it is inevitable, we can make use of it. It can be our friend.

When Steve Jobs gave his 2005 Stanford commencement speech, he told the students: “No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent.”

He went on, saying “Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.”

Dealing with your own impermanence is painful. It means making yourself vulnerable and open. It means intentionally processing things you’d rather tuck beneath the rug. But when you do, when you accept and acknowledge, you can move past the fear of, or indifference toward, death, and in doing so, you may just find life for the first time.

Be Kind to Yourself

Learning how to live in the face of death means learning to love yourself. It means you learning to be kind to you.

This means several things. First, it means, as Jobs said, avoiding the idea that you have something to lose—forgive yourself for any perceived failures. The burdens you place upon yourself, the weights you pile onto your shoulders—take them off. They’re not a big deal.

This doesn’t mean shirking your responsibilities toward those you love and care about. It doesn’t mean that you don’t work to make the world a better place. This simply means that you don’t carry these things as a weight. You don’t constantly berate yourself for not attending to them well enough.

You do your best and move on.

If you have a habit of being unkind to yourself, tapping into the awareness of death is an empowering tool that can help you forgive yourself. And once you forgive yourself and let go of your fears of imperfection and underachievement, you’ll have so much more room in your life for the things that truly matter.

Perspective and Priorities

Considering the reality of death brings perspective. It helps us see what is truly important.

What matters to you? Is it your family? Is it your web of relationships? Are you committed to a cause? Are you bent on creating something beautiful with your life? Are you spiritual or religious? What deserves your time?

Likewise, what are you doing that is wasting your time—for many, the thought of death brings this to mind first. Are you working overly long hours or spending time with people who don’t truly value you? Are you obsessed with the future at the cost of living in the moment?

Once you’ve acknowledged death as a part of life, you can use this to drive you trim the fat and focus on what’s really important to you. It forces you to examine your life, and like Socrates once suggested, the examined life is the one worth living.

In an interview with the Guardian, Holly Webber, a British woman diagnosed with terminal cancer, has this to say about how her perspective has changed since her diagnosis.

“Sometimes I feel like I’m on another planet looking in on this one. I can’t relate to people stressing about work or getting the Tube. People are so wound up, but it’s such a waste of time and energy. Chill out! I hope that by reading this, someone out there will take a second to think, ‘I’m glad that’s not me. Maybe I should worry less about the things that don’t really matter.’”

Allow death to grant you perspective on your priorities, and you’ll gain the life you truly want.

A New Life From Death

You’ve heard the old cliché, “Carpe diem,” which is Latin for “Seize the day”. This phrase is the essence of what death has to teach us. Be present. Live in the moment. Love the people in your life with all your heart and mind and soul.

Because in a hundred years, those business reports will be dust. Your money will be gone. Your fears and burdens won’t matter.

And that should make you feel free, not fearful.

So be open to the idea of death. Talk about it without fear or denial. Use it to shed your woes and gain a better perspective on your priorities.

Above all, use death to live. It’s one of the best things you can do for yourself, as well as for those who love you.

Complete Article HERE!

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Planning for death: Still not easy to talk about ‘taboo’ issue

Almost 10,000 have completed end-of-life arrangements through Advance Care Planning

Madam Amiron Jee

By Foo Jie Ying

[A] former nurse, she has seen her fair share of patients dragging out their final days on life support.

She is also a cancer patient. When she felt her body “going downhill” in late 2014, the Singapore General Hospital (SGH) volunteer, who had heard of Advance Care Planning (ACP) decided to find out more about about it.

She later completed her ACP with the SGH social service department.

The mother of three told The New Paper: “When I fell quite ill then, I was thinking, good thing I had this thing done. I informed my children (about my ACP).”

ACP is a series of conversations about one’s wish for care and treatment in the event of difficult medical situations, when one becomes too ill and is unable to make decisions for oneself.

It can be conducted informally between individuals and their loved ones at home using a workbook by the Agency for Integrated Care (AIC), or formally with trained facilitators present.

Close to 10,000 people have completed formal ACPs to date, since AIC rolled it out in 2011.

The Ministry of Health will reach out to 25,000 Singaporeans over the next four years, said Minister of State Chee Hong Tatlast month.

ACP will also be expanded to different care settings, like specialist outpatient clinics and in primary care, he said.

There is reluctance to talk about death because most people think a medical crisis will not happen to them, said Mr Mark Lin, who started the Good Death project to encourage early end-of-life planning.

The deputy director of Special Projects (Eldercare) at charity Montfort Care told TNP: “The idea of talking about planning for situations if anything happens to yourself can be quite a taboo.”

Madam Jee’s husband is one such example.

The couple had approached SGH’s social service department together, but unlike her, he refused to do an ACP because it is “pantang” (Malay for taboo).

But for Madam Jee, who battled breast cancer in 1998 and lung cancer in 2015, and was diagnosed with Stage 4 brain cancer last year, conversations about death are a matter of pragmatism.

“For me, I’m doing this partly for the sake of my children. I’m a cancer patient. For cancer patients in the terminal stage, it’s very hard to recover because the cancer cells are eating the body up.

“I don’t want my children to feel guilty for suggesting to let me go in peace instead of putting me on artificial nutrition to survive. It may sometimes stay with them, with them thinking ‘I shouldn’t have done that’,” she told TNP.

With her funeral arrangements made, the Muslim also does not have to worry about her three US-based children being unable to rush back in time for her burial, which must be done as soon as possible..

While it is still not easy to talk about end-of-life issues, AIC deputy chief executive Wong Kirk Chuan told TNP he hopes to overcome this by working with partners like the Singapore Hospice Council to raise awareness on these issues.

Instead of waiting for a medical crisis, Dr Wong encouraged early ACP conversations, which offer peace of mind.

Mr Lin, whose youngest clients include a 38-year-old couple, agreed. He said: “The whole point of the ACP is not what you put on the document, although it is a formal record of your wishes. It’s about the process of talking about such things.

“ACP is like a health booklet that follows you as you age. It’s something you have to keep updating.”

Complete Article HERE!