‘Death doulas’ help dying people and their loved ones say goodbye

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By Kevin Fagan

Henry Fersko-Weiss, co-founder and president of the International End of Life Doula Association, conducts a session at the association’s training at the Omni Hotel in San Francisco.

Henry Fersko-Weiss, co-founder and president of the International End of Life Doula Association, conducts a session at the association’s training at the Omni Hotel in San Francisco.

The emotional crumbling started when she was 14 and a friend was killed in a car crash. Three years later, her father died when his helicopter exploded. When she was in her 30s, her brother committed suicide.

By the time a close friend was murdered three years ago, the coping skills Bonnie Ludwig had for dealing with death were shattered — and she found herself one day on her knees on a sidewalk, sobbing obliviously.

Therapy gave healing, which allowed her to help comfort dying dogs at the pet care company she runs — and which soon led to her sitting in a San Francisco hotel room on Friday, learning how to help people die better.

Ludwig, 45, was taking a class in how to become a “death doula,” someone who helps shepherd the dying and their families into loving, peaceful exits. The man who founded the craft in 2003, Henry Fersko-Weiss, is guiding her and 47 other students through a weekend-long course on handling what for many seems like the worst moment possible — but, if handled deftly, can be a beautiful journey to whatever lies just beyond a heartbeat.

‘Learn to let go’

“Humans hold onto life so tightly,” said Ludwig, who flew up from San Diego to take the $600 training at the Omni Hotel. “We need to learn to let go better. We grieve so badly in our culture, and I have found it is sacred and an honor to be with animals when they die. Now I want to be able to do that with people.”

Fersko-Weiss, 68, has trained more than 1,000 people in his discipline, and this was his first session in San Francisco. People come to his trainings for many reasons, he said — some from pain, like Ludwig, some because they’ve already helped others die and feel a calling to do more. But they all have one thing in common.

“I have found that the people who come to these trainings have a great deal of compassion and want to serve people at this incredible period in their lives — death,” said Fersko-Weiss, who lives in the small town of Warwick, N.Y. “They are self-selecting. Like me, they feel this is a way they can really do some good and help. It’s very intense and very important.”

The idea of finding a better way of dealing with the obliteration of life came to Fersko-Weiss when he was a hospice volunteer and saw too many people missing the last breaths, not saying the words they wanted to say before passing, not feeling complete in what they were leaving behind.

International End of Life Doula Association

Laura Statton attends the training session by the International End of Life Doula Association at the Omni Hotel in San Francisco.

He had a friend who was training at the time as a birth doula — a midwife of sorts, who helps birthing moms and their partners stay comfortable and well-centered — and he found the approach so dynamic he took the course himself.

What he learned there led him to co-found the International End of Life Doula Association. Doula, in ancient Greek, means “woman who serves.”

“It’s just our human nature that we want to be reassured as we die,” Fersko-Weiss said. “We’re going into the unknown, and everybody has fear of passing that boundary between life and death.

“I believe the only thing that counts at the end is having people we love, someone at your bedside, talking to you, telling them how much they love them, reassuring them it’s going to be OK. Those things are important.”

Calming techniques

Students learn techniques for calming the dying and their family and friends, and then they help them find the right kind of intimacy to say the things that need to be said. To cut to the chase about what they want to be remembered for, to compile scrapbooks. To face the end with grace.

Lori Goldwyn attends the training session by the International End of Life Doula Association at the Omni Hotel.

Lori Goldwyn attends the training session by the International End of Life Doula Association at the Omni Hotel.

Sometimes doulas ease pain by having the dying visualize soothing times in their lives or by giving therapeutic touch. And they help plan what the final moments will be like. Sometimes people want candles burning, certain clothes, favorite poems read out loud. Doulas stay at the bedside, ready to recognize when death is minutes away — mottled skin, fingernails turning blue, other clues — so everyone can be prepared.

Cynthia Imperatore, who lives in New Jersey and is helping Fersko-Weiss at this weekend’s training, found that sometimes the simplest actions are the most important.

Recently she was helping a son sit vigil with his terminally ill mother, and found herself sitting at the woman’s bedside, holding her hand while the son stood stiffly at the foot of the bed with a TV blaring in the background. The final minutes were near. It didn’t feel right.

“I had him turn off the TV, put on some classical music, and I said, ‘Come here and hold your mother’s hand,’” said Imperatore. “So he came, and then I said, ‘Tell her these things’ — in Spanish, because that’s what his mother spoke. I said, ‘Tell her she’s done everything right. Tell her you’re grateful. Tell her you love her. Tell her what she did mattered.’

“And what happened is that these were the last words she heard,” Imperatore said. “He didn’t have to carry a sense of unfulfillment with him. It was good.

“What we do is not morbid,” she said with a gentle smile. “It’s a privilege to be there when people are dying. Death takes us to a place where we seek meaning, makes you question what is life. And sometimes it can make you appreciate life more.”

Complete Article HERE!

Can You Die of Laughter?

While laughter provides plenty of health benefits, laughing uncontrollably for a longer duration carries health risk for individuals with heart ailments.

healing experience

Laugh your way to good health. This is one piece of advice that often works in improving overall well-being. A good hearty laugh can work wonders in relieving stress. There is no better feeling than being with someone who makes you laugh. However, it appears that laughing too hard continuously may not be as good as it seems.

The British Medical Journal in its recent report highlights the ill-effects of excessive laughing in people suffering from various medical conditions. The research was carried out by University of Birmingham’s R. E. Ferner and Oxford University’s J. K. Aronson.

  • A normal laugh where there is no excessive sound is indeed good for the cardiovascular system. However, excessive laughter causes the blood pressure to increase substantially, putting too much pressure on the heart. A defective heart due to medical conditions like coronary artery disease and congestive heart failure (CHF) may not be able to handle such excessive pressure.
  • Intense laughter also increases the heart rate considerably, which patients with heart conditions are unlikely to tolerate for long. To put it simply, a faulty heart might not be able to sustain the increased heart rate associated with hard laughter.
  • Excessive laughter can also be fatal to people affected with cerebral aneurysm. Laughing out vigorously can considerably increase intracranial pressure (ICP refers to pressure inside the skull). This can cause the aneurysm to burst, which may lead to stroke. Even people with other neurological disorders are advised to avoid uncontrollable laughter to keep complications at bay.

Laughter-induced Asthma

  • People suffering from asthma should also stay away from laughing too hard. In one study, patients noticed that their symptoms laughing too hard(chest pain and coughing) worsened due to excessive laughing. However, it was observed that laughter-induced asthma wasn’t a case of medical emergency.
  • Also, the patients reported that when they can manage their asthma well, symptoms do not flare up when laughing for a longer duration. This means that exacerbation of symptoms due to laughter indicates that asthma is not being managed properly. Nevertheless, intense laughter may trigger asthma attacks. Hence, patients ought to take a cautionary approach when it comes to laughing loudly.
  • Laughing too hard also puts excessive strain on the chest muscles. Hence, people affected with respiratory conditions such as collapsed lung are often advised to avoid laughing loudly.

Laughter-induced Syncope

  • It is observed that intense laughter increases the breathing rate and when this continues for a longer duration, say for 10 to 15 minutes, it can be risky even to healthy individuals.
  • People have experienced shortness of breath during fits of laughter. There also have been reports of people losing their consciousness temporarily (for around 3 to 5 minutes); some have blacked out for a few seconds due to unrestrained laughter. Experts warn that excessive laughter tends to cause hyperventilation, which carries health risk but is unlikely to result in death.

A fit of hysterical laughter can also cause hernia to bulge out. Jaw trauma such as a dislocated jaw can also be one of the side effects of laughing too much. Excessive laughter is also responsible for triggering cataplexy, a condition that is marked by sudden temporary loss of muscle function.
Dr. Martin Samuels, professor of neurology at Harvard Medical, opines that extreme strong feelings related to sorrow or happiness stimulate an area of the brain corresponding to fight or flight response. During a fight or flight response, chemicals like adrenaline are released into the body. Too much of adrenaline can be detrimental to health, particularly the heart. So handling emotions (good or bad) in a better way is necessary to manage overall health.

Death from Laughter

  • There also have been confirmed reports of people laughing their way to death. In one instance, in 1989, Ole Bentzen, a Danish audiologist while watching a heist-comedy film A Fish Called Wanda went into uncontrollable fits of laughter. He began laughing so intensely that his heart started beating very fast and the heart rate was found to be fluctuating between 250 to 500 heartbeats per minute. This eventually caused cardiac arrest.
  • In another instance, in 1975, Alex Mitchell from England had uncontrollable fits of laughter while watching a television episode of Goodies, a popular British comedy series telecasted during the 1970s. He laughed hard non-stop for 25 minutes, which left him breathless due to severe heart failure. Later, it was found that Alex was a patient of long QT syndrome, a rare congenital heart disorder. This heart ailment may also have contributed to his death.

On the whole, experts say that contributory factors such as an underlying medical condition are likely to have played a role in causing deaths due to laughter. However, the fact remains that laughing too hard for long, although not fatal, can cause breathlessness.

Keep in mind that continuous fits of laughter can be risky but that doesn’t mean you should avoid laughing altogether. A good hearty laugh on a daily basis is in fact considered an elixir of life but make sure that the laughter-inducing moments do not leave you out of breath.

Complete Article HERE!

The Devastating Process of Dying in America Without Insurance

What do people do when they can’t afford end-of-life care?

By Mark Betancourt

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A patient at Houston’s Ben Taub Hospital waits on a stretcher in the hallway for space in the emergency room to open up.

Doris Portillo keeps the door to her father’s old room closed to avoid remembering the last few months of his life. It’s a small room, barely large enough for a bed, a small bureau, and a television, all of which are long gone. This is where she, her siblings, and her nephew cared for her father, Aquilino Portillo—feeding him, lifting him out of bed to take him to the bathroom, doing their best to clean the sores that festered beneath his weight.

A naturalized citizen from El Salvador, Portillo brought her parents to the United States in 2001 and sponsored their green cards so that she could take care of them as they aged. In late 2013, when Aquilino was diagnosed with end-stage metastatic prostate cancer, she discovered how difficult taking care of him would be.

Portillo’s insurance through her employer—she works nights cleaning offices for the City of Houston—didn’t cover her father, and the family couldn’t afford to buy insurance for him. They tried to determine if he could qualify for Medicare, the federal health benefit for the aging, or Medicaid, the state-run health insurance for the poor, but were given conflicting responses depending on whom they talked to. Confused by the requirements and limited by her poor English, Portillo applied for Medicaid for her father, but never got a response. So, for the better part of a year, the Portillos carted Aquilino back and forth to the emergency room in a wheelchair, where they would wait for hours, sometimes all night, simply to have his pain medications refilled.

As Aquilino’s condition worsened, he could no longer be moved from his bed to see a doctor. His body was riddled with tumors. His legs became too heavy for him to move, and his pain became unbearable. “It was ugly, ugly and scary, to see a loved one dying,” Portillo says in Spanish. “And if that person is your father, it’s something indescribable.”

By the time Portillo found out about a small county program that sends health workers to the homes of low-income, bedridden patients, her father had been at home without pain medication for two and a half months. The nurse practitioner who came, spurred by Aquilino’s obvious suffering, rushed to order medication to make him more comfortable. Two days later, when the morphine had barely had a chance to soothe him, he was gone.

“Sometimes people die and death is sweeter,” Portillo says. “I don’t think death is ever sweet, but they suffer less. My father suffered so much, he really fought to leave us.”

Portillo is not alone. Some 28 million people in the United States do not have health insurance, and for the dying and their families, lack of insurance is devastating. Though the care needs that arise with terminal illness are simple, they are often prohibitively difficult to meet without insurance. The uninsured and their families are left to navigate public and charity end-of-life care options that vary widely across the country, if they are available at all. There are no data on how or where the uninsured access this care, and the scope of unmet need is virtually unknown. What is known is that, at the end of their lives, many uninsured people quite literally cannot afford to die with dignity.

* * *

For the most part, patients with insurance have a choice when they receive a terminal diagnosis. Some choose to exhaust all possible avenues for fighting their disease, hoping conventional treatments or experimental drugs will prolong their lives. But when treatment fails or its toll is too great, the quality of a person’s final months or weeks often matters more than prolonging them. Doctors tend to steer those patients toward hospice, the holistic form of palliative care that focuses on treating symptoms in order to make a patient more comfortable and functional as they near death.

One of the fundamental tenets of hospice care is that patients and their families will have a better experience of death if the patient dies at home, among loved ones and familiar surroundings. The actual care is fairly simple, and focuses on managing symptoms and making the most of the time the patient has left. Family members administer most of this care, with support from the hospice team (a doctor, nurses, and often a social worker, chaplain, or volunteers), whose oft-repeated motto is to “care for the caregivers.”

Hospice began on the fringes in the 1960s and ’70s, somewhat at odds with the American medical-industrial complex. Hospice for Medicare-enrolled adults can’t begin until curative treatment has been abandoned, something that’s difficult for many patients, their families, and even their doctors to do. But hospice has gained a mainstream foothold over the last few decades, as doctors and patients have increasingly accepted that “life-extending” treatments can make dying more painful, often with little or no benefit to the patient. The vast majority of hospice recipients—about 85.5 percent—access the service through Medicare, and the proportion of Medicare beneficiaries using hospice before they die has more than doubled since 2000. The Centers for Medicaid and Medicare Services recently began reimbursing doctors for time spent explaining the benefits of hospice to their Medicare-funded patients, further encouraging hospice advocates, who see a lack of awareness as the fundamental barrier preventing patients from getting good end-of-life care.

But what about the millions of uninsured poor Americans who simply have no way to pay for that care? While Medicare, Medicaid, and most private insurers cover hospice, millions of Americans—mostly working-poor adults under 65—don’t have access to an insurance program. In most of the 19 states that have not accepted the Affordable Care Act’s Medicaid expansion, for example, qualifying for Medicaid is almost impossible unless you’re a child, pregnant, a parent on welfare, elderly, or disabled (only Wisconsin is finding ways other than the federal expansion to cover its childless adults). In these states, more than 3 million adults fall into what’s called the ACA “coverage gap”: They don’t qualify for Medicaid under the states’ rules, but make too little to qualify for federal subsidies on the government-run insurance marketplaces. To put this in perspective, in order to qualify for those federal subsidies, a household has to make at least 100 percent of the federal poverty level—about $20,000 a year for a family of three.

The country’s 11 million undocumented immigrants face particularly high barriers to accessing health care, including hospice, as they are legally barred from enrolling in any federally funded insurance program. Some 63 percent of the undocumented population goes without insurance coverage, and studies show that they tend to seek health care less in general, partly due to fears that interacting with any authority could lead to deportation.

Today, more than 76 percent of hospice patients are white, and terminally ill patients are less likely to die at home the lower their incomes. In many poor urban communities, less than 5 percent of the dying receive hospice care in the last six months of life.

Public-health systems around the country are trying to address these disparities, and Harris County, where Aquilino Portillo lived, provides a stark example of just how difficult it is for local safety nets to fill this care gap. Texas has the highest rate of uninsured residents in the country, with nearly 1 million uninsured people in Harris County alone—roughly 22 percent of its population. For employed adults under 65, that number is closer to 30 percent. The Houston area has an expansive health-care safety net that serves the poor, including many private hospitals and clinics that provide some care for free. But it’s the county’s taxpayer-funded hospital district, Harris Health, that is ultimately responsible for providing healthcare to those who can’t afford it. Like many public-health systems around the country, it struggles to handle its uninsured population while simultaneously facing perennial budget problems, due in part to the chronic poverty of its patients. Difficult decisions must be made and priorities set; only so much can be done to care for the dying when so many others need treatment.

Harris Health doesn’t offer hospice, but it pieces together something similar through in-hospital consultations, a palliative-care clinic, and the house-calls program that Doris Portillo found too late. Low-income patients can use these services with financial assistance from the county, which used to come in the form of a laminated “Gold Card,” a name that locals still use to refer to the benefit. But applying for this financial assistance takes precious time—Doris Portillo says she spent a month away from her job trying to get her father Gold Card eligibility—and many people eligible for the benefit are not able to use it. While low-income undocumented immigrants in Harris County are entitled to Gold Card assistance, for example, providing proof of residence and income to establish eligibility can be difficult, since they often share housing and work as day laborers for cash. It’s an unspoken truth in Harris County that the hospital district serves those who can pull together the correct documentation to prove their eligibility for financial assistance, those who can endure the system’s chronically long wait times, and those who can essentially coordinate their own care. Like the Portillos, many end up getting end-of-life care the only way they know how—at the emergency room.

Dr. Ricardo Nuila, a hospitalist at Ben Taub, the largest of Harris Health’s three hospitals, describes the county’s emergency rooms as a kind of revolving door for terminally ill poor people. The uninsured tend to find out about serious illnesses like cancer later than the insured, since they use primary health care less frequently and are twice as likely to postpone or go without medical care due to cost than those with insurance. This means that by the time many uninsured patients seek care, their symptoms are acute and require immediate attention in an emergency room. But even those in non-emergency condition simply see no alternative to the ER—federal law requires emergency providers to stabilize a patient’s symptoms regardless of his ability to pay. Once that’s done, the patient is usually sent home; for terminal patients, this cycle only repeats as their condition worsens.

“That’s one of the most concerning things when you’re working in the hospital and you walk through the emergency room,” Nuila says. “The patients might actually have their pain and their suffering well controlled with medications at home, but they’re in the emergency room just to get prescriptions.”

Emergency rooms are brutal places for the dying. Patients and their families can spend entire days waiting to be seen by a doctor. In 2013, a local news channel reported 14-hour wait times at Ben Taub, with as many as 100 people at a time filling the reception area. Terminally ill patients must describe their symptoms again and again as they pass through various levels of triage, often undergoing tests or procedures intended to lay the groundwork for treatment they know is futile. Once admitted to the hospital, they are disturbed every couple of hours by nurses checking vital signs, even if the patient has only hours to live. There are the sounds and smells of other patients, and the comings and goings of a legion of hospital workers. “You’re dying in a semi-public place,” says Nulia. “That can be very difficult for somebody who’s trying to have an environment of respect for their dying one.”

Hospitalists like Nuila try to send terminally ill patients home with as much medication as possible and some sense of how to keep their symptoms at bay. The textbook next step for insured patients, he says, is to suggest hospice so that families can get the proper care at home. But he knows that many of his patients can’t afford it. “In a way, we’ve just sort of come to accept poor outcomes for unfunded patients,” he notes. “We just say, ‘OK, let’s hope that they get hospice services, or charity hospice kicks in.’”

According to the National Hospice and Palliative Care Organization, only around 1 percent of hospice services in the United States are delivered free of charge to families who otherwise have no way to pay for them. Nonprofit hospice centers are often required to provide some charity care, but there are no government guidelines as to who should receive it or how much of it should be available in a given geographical area. One-fifth of all hospices nationwide provide no charity care.

Nuila estimates that Ben Taub is able to connect unfunded patients with charity hospice only about half the time, though Harris Health doesn’t officially keep track of that number. It is rare for charity care to be flat-out unavailable, but for indigent terminally ill patients who often have only days to live, the wait time—commonly four to six weeks—is as good as nothing. When they can’t get a patient into hospice, the already overworked doctors, social workers, and case managers at the hospital do their best to piece together the next-best thing.

Alexie Cintron is one of those doctors. A palliative-care specialist who provides serious-illness consultations for hospitalized patients at Ben Taub, he also runs an outpatient palliative-care clinic for patients who are staying at home. Provided the patient is covered by a Gold Card and can make it to the clinic to see him, Cintron can show family members how to care for their dying loved one and send them home with equipment like a hospital bed or a bedside commode, and they can get prescriptions filled through the system’s own pharmacy at Ben Taub.

“Essentially, I’m kind of a hospice doctor by default,” Cintron says. “We can’t find them hospice, we don’t provide hospice as a system, and so I’m the fallback.” But the help that Cintron provides is a far cry from the comprehensive and consistent care provided by hospice, and he and the nurse practitioner he works with can stretch their time only so far. “Many times we struggle with being able to support the family enough so that we try to keep this patient from bouncing back to the hospital in the next week or so.”

For poor families, the difficulty of providing good care for their loved one often stretches far beyond the health-care system itself. “If they have to take three different buses in order to get to our clinic, they might not be able to make it in time [for an appointment],” Cintron says. Money is often an issue—even with financial assistance from the county, which can lower the cost of filling a prescription to as little as $8, some people are unable to afford their medicines. Then there’s the scarce resource of time. Family members have to take off work or find child care, and they must make time to keep appointments, get prescriptions filled, and apply for financial assistance. This is all before they’ve spent any time actually caring for their dying loved one.

For at least some indigent patients, however, Harris Health does provide something akin to hospice care in the home. Dr. Anita Major is director of the system’s geriatric house-calls program, the one that was able to visit Aquilino Portillo only once before he died. The service began in the 1980s, but has expanded its patient load fourfold since 2010 in an effort to address the need for home care in the community. It’s not hospice, she says—partly because it generally involves less frequent visits, less comprehensive support, and only serves patients who are unable to leave their homes for medical appointments—but it’s pretty close. Like many uninsured people, however, Major’s poorest patients often connect with home care only when their illness has reached a crisis point and the extremity of their symptoms requires hospitalization anyway. “The problem is we meet them and, you know, 10 days later they’ve died,” Major says. “And we really should have met them a year before that.”

But the most vulnerable population, says Major, are those who never cross paths with the system—people who may be eligible for county health services but don’t know it or can’t access them. For every family like the Portillos, who find care too late, there are likely many more who never find it at all. “I think it’s a lot more than I’m aware of,” says Major. “Those are the people that I think really are suffering, and they’re just invisible to us.”

* * *

Nationwide, it is hard to say just how many people who want or need end-of-life palliative care are forced to go without it. One recent nationwide survey assessing the availability of palliative care in general (including for nonterminal patients) showed that, while the prevalence of palliative programs in hospitals is steadily increasing, fewer than half of the country’s rural or isolated hospitals offer the option at all, let alone to unfunded patients. Statistics on hospice itself are generally tracked through utilization by Medicare and Medicaid beneficiaries, and there is no database for how or where the uninsured access the service.

“It’s difficult to measure unmet need,” says Carol Spence, vice president for research and quality at the National Hospice and Palliative Care Organization. She adds that quantifying hospice access is complicated by its elective nature. “There’s not a defined population that should have hospice like there is for a given illness,” she says. “Hospice is a choice.” But it’s a choice many of the dying poor don’t have.

For safety-net providers, expanding access to hospice is not a simple question of funding the service itself. Though outpatient hospice services cost on average 15 times less than treating the dying in a hospital—between $100 and $200 per day for hospice versus close to $3,000 per day in a Texas public hospital—offering hospice through public systems like Harris Health would actually increase the overall cost to those systems. Public hospitals tend to have far more demand for care than they can meet, so a bed vacated by a patient transferring to hospice will immediately be filled, and the hospice patient’s care will amount to a new expenditure. Like many public-health systems around the country, Harris Health is facing a deficit this fiscal year—$8 million—even after cutting overtime for its staff and reducing the number of people who qualify for Gold Card assistance. Because these systems are struggling to fund even their preventive care, adding to their deficits to treat the already dying is simply not an option.

The underlying reality is that local safety nets can only be expected to do so much for America’s uninsured, whose real problem, especially at the end of life, is that they don’t have insurance. According to the National Hospice and Palliative Care Organization, the most efficient way to increase access to hospice for low-income patients is to provide insurance coverage to the nation’s 28 million people who currently don’t have it. “It’s better to insure people ahead of time than to subsidize safety-net care after the fact,” insists Charles Begley, a veteran health-care researcher at the University of Texas School of Public Health. “There are many very valuable, very important, very cost-effective health-care services that this limited, publicly funded health-care system cannot address.”

Not only would insurance allow indigent patients to use the same hospice providers as the more well-off, but the consistent access to primary care that comes with being insured would make them more likely to hear about the service and choose to use it earlier in their illness. At the same time, Begley adds, insurers would have a financial incentive to make hospice a more visible and readily available option throughout the health-care system. Safety-net providers could focus their resources on acute and preventive care, and everyone would be better off.

But the United States is a long way from providing insurance to all. Four of the five states with the highest uninsured rates have decided not to expand their Medicaid programs under the Affordable Care Act, or even to set up their own insurance exchanges. According to the Kaiser Family Foundation, nearly 5 million more people nationwide would qualify for Medicaid—and gain access to hospice coverage—if their states chose to expand. If Texas were to expand its Medicaid program under the ACA, it would bring in nearly $6 billion in new federal funding and insure 2 million low-income adults, nearly 400,000 of them in Harris County alone.

In the current political climate, however, that seems unlikely to happen. Texas and the other eighteen states that have refused to expand Medicaid coverage currently rely on temporary federal funding to reimburse their safety net systems for the uncompensated care of uninsured patients. While half of Harris Health’s $1.3 billion budget comes from county property taxes, for example, about a quarter of it comes from these reimbursements. (Harris Health’s palliative-care services, including the house-calls program, were either created or expanded to their current level using this funding.) US Health and Human Services Secretary Sylvia Burwell has made it clear that while the federal government won’t punish states for not expanding Medicaid, it does expect them to come up with a viable long-term alternative in return for continued funding. Policy-makers in Texas, as in other Republican-controlled states, claim they merely want the freedom to design their own indigent-care systems without federal constraints, but the Texas legislature has made no move to put a long-term strategy in place. Analysts like Begley believe that lawmakers are waiting for the results of the 2016 election to determine their next moves—and in the meantime, safety-net funding is far from secure.

The election could, indeed, be a turning point. Donald Trump, the presumptive Republican presidential nominee, has vowed to repeal the Affordable Care Act—a move that health-policy experts warn would reverse the real progress the law has made in insuring low-income Americans. The Democrats would do the opposite: Presumptive presidential nominee Hillary Clinton plans to expand the ACA toward a goal of universal coverage, while Bernie Sanders proposes placing all Americans and undocumented immigrants under a federally administered, single-payer healthcare program.

“This is another make-or-break election for the Affordable Care Act,” said David Blumenthal, president of the Commonwealth Fund, a health-care research foundation, addressing a conference at the Harvard Law School in January. At the same time, he added, “we are now, for the first time in a generation, actively debating how far left to go with health-care policy.”

But until that debate results in tangible changes in how the health-care system works, the burden of caring for those who are dying in poverty will remain mostly on the shoulders of families like the Portillos, who simply do what they can to ease their loved one’s pain when the system isn’t there to support them.

“Of course,” says Portillo, “there is another way.” And, of course, she’s right.

Complete Article HERE!

Life’s Too Short to Wear Beige

I was a closeted gay woman surrounded by white-hued walls and yearning for my own colorful world. My sister’s death changed everything.

By

too_short_for_beige

All my life, my walls have been painted different shades of white, and beige. Ordinary, predictable hues, “normal” and controllable in feel.

My childhood bedroom was a cool shade of white, with Tiger Beat pull-out posters and a 1978 World Champions Yankees poster from Burger King thumbtacked to my bulletin board. My college dorm room walls were made of cinder block with the gum-tacked picture collages I had made of my family, high school and camp friends. My first New York City apartment was a rental — with eggshell painted walls. The Georgia O’Keefe print I had picked up at Bed and Bath, added some warmth, the pastel palette calming. But the walls around me, I always kept those in tones of white, off-white, and beige.

When I got married to my boyfriend of four years, and a year later gave birth to our beautiful son, we moved to the New Jersey suburbs. And yes, we painted our walls different shades of white and beige in our new home.

In 2004, the oldest of my two sisters needed me. She’d been battling stage 4 ovarian cancer for seven years, and we’d learned I was a stem cell donor match, and her best chance to beat her cancer. So, I took time off from my job, and brought my two-year-old-son back and forth for each of my sister’s two-week long treatments at M.D. Anderson in Houston.

A few months before her treatments began, my sister was still living back in Atlanta, at home with her husband and two daughters. “What’s this?” her husband asked after work one night, upon seeing the scattered paintbrushes and Benjamin Moore color wheel. “Life’s too short for beige,” my sister said. It only took a week for every room in their house to get a fresh coat of paint. From rooms of white and off white to bold and bright-colored walls.

As my sister fought her battle, I fought my own. Like the tick of a kaleidoscope, my entire world of control tumbled and rotated; suddenly, my life of white walls felt unstable and discomforting.

Perhaps it was also when I began to realize that my sister’s doctor, the one I had first laid eyes on during round one of the stem cell transplant, was my perfect match. She explained how my blood and stem cells could save my sister, but she also opened my eyes to understanding how my sister’s “you can’t control what life will throw at you, but you can control how you deal with it” philosophy directly related to the safe and normal box I had created for myself all those years, and the reality I had been trying to shove away.

My big sister, who walked the hallways of the MD Anderson Cancer Center in her Fresh Produce clothes and her bald head held high with a Life is Good baseball hat covering it, even during a time of grave uncertainty, with her cross body canvas handbag adorned with different sized John Kerry for President buttons — in Texas, aka Bush country.

The truth is, I was a gay woman trying to convince myself it would be easier to live surrounded by safe, white hued walls rather than within my own colorful world.

My sister knew of my decision to live my truth before she passed away, a year after her transplant. Her doctor, today my wife, and I live together in our suburban New Jersey colonial. We have three children, two of whom are named after my beautiful and brave sister. And our walls? All of them are painted the brightest and boldest colors of the Crayola box. Just how we like it.

Complete Article HERE!

Maori Digital Stories about whanau caregiving

Today’s posting comes to us via Clare O’Leary | Palliative Care Educator | Mary Potter Hospice | Wellington, New Zealand

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Maori digital stories about caring for kaumatua (elders) at the end of life. Teaching resource for nursing students, nurses and other health professionals who want to know more about Maori whanau (family) end of life needs and priorities.

 

More information:  https://www.fmhs.auckland.ac.nz/en/so…

Powerful Advice From A Dying Man

By Houston Barber

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Life is all a matter of perspective. We may look at someone and think they’ve got the perfect life and everything figured out, but we never know what that person is really going through. At the same time, we spend countless amounts of energy struggling and stressing over the small stuff in life, and unfortunately, it’s not usually until something traumatic happens that we realize this.

Recently, a young man in California was face to face with a life-threatening illness, and his prognosis did not look good. His cancer was diagnosed too late and doctors only gave him months to live. This is the sort of thing that will put your life into a harsh perspective, and the 24-year-old wanted to share his new outlook on life with those he would be leaving behind.

So, the young man began to write a letter and addressed it to anyone who would take the time to read it. In the letter, he wrote the things he wished he would have done, and some pieces of advice to those who would be willing to listen. Read the full letter below and take the dying man’s words to heart as you go about your life.

“I am only 24 years old, yet I have actually already chosen my last tie. It’s the one that I will wear on my funeral a few months from now. It may not match my suit, but I think it’s perfect for the occasion.

The cancer diagnosis came too late to give me at least a tenuous hope for a long life, but I realized that the most important thing about death is to ensure that you leave this world a little better than it was before you existed with your contributions. The way I’ve lived my life so far, my existence or more precisely the loss of it, will not matter because I have lived without doing anything impactful.

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Before, there were so many things that occupied my mind. When I learned how much time I had left, however, it became clear which things are really important. So, I am writing to you for a selfish reason. I want to give meaning to my life by sharing with you what I have realized:

  • Don’t waste your time on work that you don’t enjoy. It is obvious that you cannot succeed in something that you don’t like. Patience, passion, and dedication come easily only when you love what you do.
  • It’s stupid to be afraid of others’ opinions. Fear weakens and paralyzes you. If you let it, it can grow worse and worse every day until there is nothing left of you, but a shell of yourself. Listen to your inner voice and go with it. Some people may call you crazy, but some may even think you’re a legend.
  • Take control of your life. Take full responsibility for the things that happen to you. Limit bad habits and try to lead a healthier life. Find a sport that makes you happy. Most of all, don’t procrastinate. Let your life be shaped by decisions you made, not by the ones you didn’t.
  • Appreciate the people around you. Your friends and relatives will always be an infinite source of strength and love. That is why you shouldn’t take them for granted.

It is difficult for me to fully express my feelings about the importance of these simple realizations, but I hope that you will listen to someone who has experienced how valuable time is.

I’m not upset because I understand that the last days of my life have become meaningful. I only regret that I will not be able to see a lot of cool stuff that should happen soon like the creation of AI, or Elon Musk’s next awesome project. I also hope that the war in Syria and Ukraine will end soon.

We care so much about the health and integrity of our body that until death, we don’t notice that the body is nothing more than a box – a parcel for delivering our personality, thoughts, beliefs and intentions to this world. If there is nothing in this box that can change the world, then it doesn’t matter if it disappears. I believe that we all have potential, but it also takes a lot of courage to realize it.

You can float through a life created by circumstances, missing day after day, hour after hour. Or, you can fight for what you believe in and write the great story of your life. I hope you will make the right choice.

Leave a mark in this world. Have a meaningful life, whatever definition it has for you. Go towards it. The place we are leaving is a beautiful playground, where everything is possible. Yet, we are not here forever. Our life is a short spark in this beautiful little planet that flies with incredible speed to the endless darkness of the unknown universe. So, enjoy your time here with passion. Make it interesting. Make it count!

Thank you!”

Complete Article HERE!

5 Tips for Choosing a Hospice Provider

Proximity is key

By Angela Morrow, RN

Choosing a Hospice Provider

When a patient is initially referred to hospice care, usually by their physician or a case worker within the hospital, they are usually given a list of hospice agencies in their area to choose from. Sometimes these referral sources have a particular agency that they prefer and their recommendations shouldn’t be taken lightly; they are in position to see how well a particular agency cares for their patients.

However, as with any health care decision, you should be as informed as possible in order to know that you are making the best decision for you and your loved ones.

Why Choosing the Right Provider Matters

All hospice agencies work within the guidelines set forth by Medicare. The basic services they provide are the same across the board. This may leave you wondering why it would even matter which hospice agency you choose. There are differences, however, and they’re often tucked away in the small details.

It’s important to do a little research from the start to find where those differences lie.

To find out what services hospice agencies provide, see What is Hospice Care?

Your first interaction with a hospice agency may happen over the phone after they receive your referral information and call you to set up an appointment. It may happen in the hospital setting when a representative from the agency comes to evaluate your loved one and offer information.

It may be initiated by you. Regardless of how your initial interaction takes place, there are some important facts to gather from the start.

The 5 Things to Consider When Choosing a Hospice Provider

  • First, the location of the staff is important. More on that below.

Location, Location, Location

Hospice care can take place in the home, in a nursing home or in a hospital. Very few hospices have inpatient facilities, which means that most people receive hospice care via an independent agency. So, probably the most important question you can ask a hospice facility is related to the location of their nurses.

Just to clarify, it really makes no difference where the agency’s office is located, but it makes a huge difference where the nurses are located. I used to work on-call for a large hospice agency that covered three counties, over 200 square miles. On weekends, I covered the entire area with only the help of one LVN (licensed vocational nurse). Consequently, I would sometimes be with a patient in one county and get a call from another patient who had a crisis in another county who then had to wait two hours or more until I was able to get there.

Knowing how far away the on-call nurses live from you and how large of an area the nurses cover is essential to knowing how responsive they will be to your urgent needs. Keep in mind that some hospice agencies have multiple branch offices that could be 50 miles or more apart from each other. Make sure that if the agency your looking at has multiple branch offices that they also have a separate on-call nurse covering each one, and that the on-call nurse covering your area also lives in your area. If you have a crisis in the middle of the night or on the weekend, the last thing you want to do is wait two or more hours for help.

Complete Article HERE!