What Are the Levels of Hospice Care?

Medicare Determines Hospice Care Level Definitions

levels of hospice care

By Angela Morrow, RN

Medicare defines four distinct levels of hospice care. This benefit provides goods and services to allow you and your family to stay together in the comfort of your home, unless you need care in an inpatient facility, for the duration of your terminal illness.

The patient is still responsible for the deductible and coinsurance amounts for expenses incurred due to health problems not related to the terminal illness.

Level 1 – Routine Home Care

Routine home care is the basic level of care under the hospice benefit. If a patient resides in a nursing home, it can also be called routine nursing home care, and includes:

  • Nursing services
  • Physician participation
  • Medical social services
  • Home health aide services
  • Counseling services (pastoral, spiritual, bereavement, dietary, and others)
  • Medications
  • Medical equipment
  • Medical supplies
  • Lab and diagnostic studies related to terminal diagnosis
  • Therapy services

Level 2 – Continuous Home Care

If you have continuous home care, a nurse and/or a home health aide will remain in the patient’s home environment for 8 to 24 hours per day. Continuous care is a short-term level of care reevaluated every 24 hours. Some examples of symptoms requiring continuous care would be:

  • unrelieved pain
  • severe nausea and vomiting
  • severe shortness of breath
  • anxiety or panic attacks
  • a breakdown in the primary caregiver support system

Level 3 – General Inpatient Care

Some patients have short-term symptoms so severe they cannot get adequate treatment at home or they may feel more comfortable getting treatment at aninpatient facility.

Symptoms requiring inpatient care are the same as those requiring continuous care (above), only the setting of care may be different.

With inpatient care, nurses are available around the clock to administer medications, treatments, and emotional support to make the patient more comfortable. There are several types of facilities that offer inpatient hospice services:

  • A free-standing facility owned and operated by a hospice company.
  • A hospital may have a unit to provide inpatient hospice care.
  • Long term care facility may lease a unit in a nursing home to a hospice company.

Level 4 – Respite Care

Respite care services are more for the family than for the patient. If the patient does not meet criteria to qualify them for continuous care or inpatient care but the family is having a difficult time, respite care may be an option.

If a patient’s family is the primary source of care and cannot meet their needs due tocaregiver stress or other extenuating circumstances, a patient may temporarily be admitted to an inpatient environment to give the family a needed break or respite. There is a five-day limit on respite care. Once that period expires, the patient is discharged and returns home.

Determining Level of Care

A facility admits patients to hospice on any level of care necessary at that time. The facility can transfer the patients between levels of care as their needs change. The decision to treat someone at a higher level of care falls to the hospice physician, who documents this information. With four levels of care in place, no patient should ever be left in a crisis situation alone.

Complete Article HERE!

At the End of Life, What Would Doctors Do?

By IRA BYOCK, M.D.

At the End of Life

Americans have long been chided as the only people on earth who believe death is optional. But the quip is losing its premise. A recent profusion of personal narratives, best-selling books and social entrepreneurs’ projects suggest that, as a culture, we are finally starting to come to terms with our mortality. Nationally, the Conversation Project is engaging people to discuss their wishes for end-of-life care. Death Cafes and Death Over Dinner events are popping up across the country, reflecting an appetite for exploring these matters. So too, the Dinner Party and the Kitchen Widow are using meals as a communal space to explore life after loss.

Admittedly, contemplating mortality is not (yet) a national strong suit. That’s why these cultural stirrings are so significant. At a minimum, our heightened awareness and willingness to talk about illness, dying, caregiving and grieving will lead to much better end-of-life care. However, the impact on American culture needn’t stop there. Like individuals who grow wiser with age, collectively, in turning toward death, we stand to learn a lot about living.

Doctors can be valuable guides in this process. In matters of illness, people are fascinated by the question, what would doctors do? Consider the social phenomenon of Dr. Ken Murray’s online essay, “How Doctors Die.” Dr. Murray wrote that doctors he knew tended to die differently than most people, often eschewing the same late-stage treatments they prescribed for patients. The article went viral, being read by millions, and reprinted in multiple languages in magazines, newspapers and websites across the globe.

Dr. Murray’s observation even engendered studies of doctors’ preferences for care near the end of life. So far, results are mixed. In a Stanford study, 88 percent of responding physicians said they would avoid invasive procedures and life-prolonging machines. But a newly released comparative study of Medicare recipients, as well as a longitudinal study and separate analysis of Medicare datapublished in January, suggest that the actual differences between end-of-life treatments that doctors and nondoctors receive are slight. Perhaps like nearly everyone else, when life is fleeting, physicians find it difficult to follow their previous wishes to avoid aggressive life-prolonging treatments.

For what it’s worth, the terminally ill colleagues I’ve known, including those I’ve been privileged to care for, have usually been willing to use medical treatments aplenty as long as life was worth living, and took great pains to avoid medicalizing their waning days. In any event, the public’s interest in the medical treatments that doctors choose must not be allowed to reinforce our culture’s tendency to see dying solely through medical lenses. More to the point is the question, how do dying doctors live?

What dying doctors do with their time and limited energy, and what they say, are deeply personal, sometimes raw and often tender. Like everyone else, doctors experience pain and suffering – yet many speak of a deepening moment-to-moment sense of life and connection to the people who matter most.

Listen to a few.

Dr. Jane Poulson lost her sight to diabetes while still in medical school. After years of successful internal medicine practice, Dr. Poulson developed inflammatory breast cancer and knew it would claim her life. Writing in the Canadian Medical Journal she said:

In a paradoxical way, I think I can say that I feel more alive now than ever before in my life … When you presume to have infinity before you the value of each person, each relationship, all knowledge you possess is diluted.
I have found my Holy Grail: it is surrounding myself with my dear friends and family and enjoying sharing my fragile and precious time with them as I have never done before. I wonder wistfully why it took a disaster of such proportions before I could see so clearly what was truly important and uniquely mine.

About a year after being given a diagnosis of incurable esophageal cancer, Dr. Bill Bartholome, a pediatrician and ethicist at the University of Kansas, wrote:

I like the person I am now more than I have ever liked myself before. There is a kind of spontaneity and joyfulness in my life that I had rarely known before. I am free of the tyranny of all the things that need to get done. I realize now more than ever before that I exist in a ‘web’ of relationships that support and nourish me, that clinging to each other here ‘against the dark beyond’ is what makes us human … I have come to know more about what it means to receive and give love unconditionally.

Dr. Bartholome referred to this period before his death as “a gift.”

It has given me the opportunity of tying up the ‘loose ends’ that all our lives have. I have been provided the opportunity of reconnecting with those who have taught me, who have shared their lives with me, who have ‘touched’ my life. I have been able … to apologize for past wrongs, to seek forgiveness for past failings.

A healthy defiance is often palpable within the personal decisions of doctors who are living in the growing shadow of death. My friends Herbert Maurer and Letha Mills, long-married oncologists, boldly renewed their vows before a crowd of family and friends during the months Herb was dying of cancer. In “When Breath Becomes Air,” the neurosurgeon Dr. Paul Kalanithi relates the decision he and his wife, the internist Dr. Lucy Kalanithi, made to have a child, while knowing full well that he was unlikely to see their daughter grow up. Such affirmations of couplehood in the face of death are not denial; but rather insubordination, eyes-wide-open commitments to living fully despite the force majeure.

Gratitude also commonly emerges in the experiences of dying clinicians. In one of our last email exchanges, my friend, the clinical psychologist Peter Rodis, wrote:

The shock of knowing I’ll die has passed. And the sorrow of it comes only at moments. Mostly, deep underneath, there is quiet, joyous anticipation and curiosity; gratitude for the days that remain; love all around. I am fortunate.

The neurologist Dr. Oliver Sacks concluded his essay “My Own Life” in exaltation.

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.

These experiences are like dabs of paint on an Impressionist’s canvas. Taking in this contemporary ars morendi we can appreciate how dying and well-being can coexist. For all the sadness and suffering that dying entails, our human potential for love, gratitude and joy persists.

How fitting would it be for a corrective to the medicalization of dying to come from the medical profession itself? The general public’s interest in what doctors do can teach all of us about living fully for whatever time we each have.

Complete Article HERE!

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

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!

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

002
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!

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!

Becoming a ‘death doula’: Why I choose to sit with people as they die

By Jaki Fisher

01
Jenny (pictured right) is the first person Jaki sat with as she died.

HAVE you heard the term “death doula”?

You may have. It’s been bandied about a bit recently, after Imogen Bailey recently wrote an article for Mamamia about training to become one.

In the article she mentions that musician Ben Lee is also a death doula.

In case you’re not familiar with the term, a “doula” is traditionally someone who gives support to a woman during pregnancy and during and after the birth.

A death doula is someone who helps at the other end.

Here, Jaki Fisher, an Australian living in Singapore and studying to be a death doula, writes about her first experience witnessing death.

JENNY was the first person who asked me to be with her when she died.

A single woman in her early 50s with only a couple of nephews she was in touch with, Jenny was being cared for at the Assisi hospice in Singapore where I was a volunteer.

Jenny and I talked a lot about what might happen during the dying process and afterwards and it was then that she told me she wanted me to be with her as she died. I said I would do my very best to make this happen.

After several months, Jenny suddenly got quite a lot weaker but at the same time, something in her shifted. I noticed this and asked her if she felt different and she replied that she felt that she was coming to accept what was happening.

She was hardly eating but I remember that when she would have a sip of coffee, her eyes would light up at the taste and she would savour it with delight. And when she went into the garden, she would marvel at the sun and the wind — simple, present joys became very strong for her.

At the end, Jenny deteriorated rapidly. Her breathing changed and it was clear to the nursing staff that she would not live much longer.

Jenny was the first patient at the hospice to take part in an end of life vigilling program, No One Dies Alone (NODA). Based on one that began in the US, theoriginal was started by a nurse called Sandra Clarke who, after leaving a lonely old patient who begged her to stay, returned after her rounds to find he had died alone. She couldn’t forget this and eventually set up this no-fuss, volunteer-run program that has been implemented in many large hospitals across the US.

With most NODA programs in hospitals, volunteers are called to sit with dying people who are alone, estranged from their families or far away from loved ones when they are actively dying.

At Assisi, from the time an alone person is admitted to the hospital, the NODA volunteers become the family and visit them until they were actively dying and then sit in vigil during the last couple of days of their life — if that’s what they wanted.

Jaki has assembled a group of volunteers for her NODA program.
Jaki has assembled a group of volunteers for her NODA program.

LAST MOMENTS

I started the vigil and took the first shift, setting up Jenny’s room with music and soft lights. Jenny was not conscious but I believe she knew I was there. I spoke to her and told her I was there to be with her as she had requested. I remember feeling nervous as I went into the room and initially I felt like I had to ‘do’ things, like read poems or inspiring verses.

Gradually, I took some time to ground and centre myself and create an atmosphere of awareness and presence, as we had learnt in our training. Then, I just focused on really being with Jenny, with no distractions.

I was aware that this was not a normal time, that something big was happening. Jenny had had a fever and when I first sat with her, she was moaning a little. This was unsettling but it also seemed quite normal — I was struck by how OK everything was, even though it was also very sad. In some weird way, as humans, we know how to do this end of life thing. Her breathing became very shallow and there were long pauses between each breath. I remember at one point, I thought that perhaps she had breathed her last breath when suddenly she took a big inhale and I jumped in fright. I sort of laughed to myself and thought that Jenny was again teaching me, reminding me that this was not about me, it was about Jenny and I just tried to relax and be with whatever was happening.

She passed away after only 90 minutes, very gently and softly while I was singing quietly to her. I couldn’t help but think that as usual, she didn’t want there to be a fuss.

We had promised her that she would not be alone when she died, and I was so grateful that we could fulfil that promise.

Being with someone when they die is powerful but it is not frightening. Many people make this comparison, but dying is a bit like labouring to give birth. There are urgent bits and struggling bits and then at the end, it all goes quiet. When Jenny actually died, I hardly even realised, it was so soft, a tender sigh.

After Jenny’s death, her nephew told me that her life had been quite hard and often lonely but that she had shared with him that she was amazed that in her last months of life, when things were really difficult, there was so much love and care in her life.

Jaki and NODA volunteers catch up to celebrate Jenny’s memory.
Jaki and NODA volunteers catch up to celebrate Jenny’s memory.

DEATH DOULAS

In the past two years, the NODA team at Assisi has accompanied more than 10 people during the last months of their lives and sat with them during their final hours. Many of the people we have accompanied lived hard, isolated, rough lives and I wish they could have been otherwise, but at least at the end part, they were loved with no expectations.

My dream is that people all over the world will adopt the NODA program in their own way so that we can all start to look after each other, especially at the end of life.

Nowadays, the profession of death doula is garnering a lot of interest. So am I a death doula? I am certainly interested in this area and I am heading off to San Francisco soon to take part in a death doula training and receive certification.

But I have my reservations about this sudden interest and the cynical part of me wonders if it is just the latest trendy thing, like being a yoga teacher was.

However, another part of me celebrates that perhaps this interest might be indicative of people wanting to face their mortality head on. I also like that death doulas are there to help people reclaim death as a natural part of life.

In the past, most people died at home — it was just another of the momentous life events — but in the past 50 years, we’ve pushed it away out of sight.

One thing I do want to say is that it is sometimes easy to romanticise dying but it’s not romantic — death is messy, draining, demanding, challenging, funny, heartbreaking, boring — everything … Death is often also really sad and a big loss, so I don’t really feel comfortable about making it a big celebration, unless of course it is!

I’m also wary of the idea of having a “good death” — that kind of creates a weird sort of pressure — like the one that is given to mums when they are striving to have a natural birth at all costs — our death will be what it will be.

However, what I do think is great is that people are talking about end of life and their choices. This conversation is so crucial and helpful and will make the end of life much clearer at a time when things are so rarely clear. However, once again, I wonder about being too attached to a plan — I think death would chuckle wryly at that idea.

To me, being with someone at the time of death is to become intimately exposed to not knowing — it asks us to be fully present and fully OK with whatever happens and not to impose a preconceived idea of what it should be like. To me, accompanying someone at the time of death is not really about doing anything, it’s about being able to hold and be there for whatever. We like to control everything in our lives but death does its own thing … it’s still the biggest mystery in our lives.

Jaki in her late 20s
Jaki in her late 20s

‘AN UNNATURAL INTEREST IN DEATH’

I first volunteered at the Assisi Hospice not because of any great altruistic yearning to serve but because I knew that the people there had the inside story about dying. And I had an unnatural interest in death.

I fell into a black swirl of depression at 27 after I tried to fix my face. I went for some kind of noxious peel, a treatment that’s now probably banned. It’s kind of embarrassing — other people get depressed because they lose a loved one or suffer a terrible trauma — me, I thought I’d wrecked my face and down I went into the dark pit. (It’s fine now. Not quite the same but a perfectly serviceable face.)

I was lucky and got treatment and part of the therapy was to do something for others, to forget about “me” for a while. After much sulking and prevaricating I finally started volunteering at the Assisi Hospice.

Jaki with friends in Singapore.
Jaki with friends in Singapore.

I still remember the first time I went into the wards and saw my first “dying person” — how tiny and fragile, limbs like little birds, and yet how bright the eyes were.

I didn’t really speak Mandarin, Malay or Tamil (three of Singapore’s four official languages) and most of them didn’t speak English — the 4th one. And yet, those people didn’t just teach me about death, they taught me about life and living.

They taught me about bravery, love, tenacity, dignity and they didn’t seem to mind that I was a self-absorbed, self-destructive girl. They didn’t judge me and they let me see them in all their vulnerability and in this strange suspended time of life. Yes, they were dying but they were also very much alive.

I was supposed to be the do-gooder but they were the ones who taught me and showed me that life is all about moments and all about connection and all about love — and that’s about it.

I moved to the US to study Buddhism and then back to Melbourne but I never forgot the Assisi hospice. In 2012 after reading Being with Dying, a book about accompanying people at the end of life by Roshi Joan Halifax, I attended her Buddhist Chaplaincy program in Santa Fe.

Two years on, I was a Buddhist chaplain and also completed a unit of Clinical Pastoral Education at the Royal Melbourne Hospital.

But I was still volunteering at Assisi and as part of my chaplaincy project helped set up the NODA program.

JENNY’S LEGACY

Jenny spoke openly of her anger and frustration. She had accepted that she did not have long to live but she could not accept that she had to wait so long to die. This was another lesson for us. It was hard not to want to ‘fix’ this and make it better for her. At one time, she wondered what the point of her life was and expressed sadness that there were so many things she hadn’t done. I told her that from my point of view, she was teaching us so much and that she would live on so powerfully for us as our first NODA patient.

Jaki and fellow volunteers attend the funeral of Mr Loong, a man who had no friends or relatives in Singapore.
Jaki and fellow volunteers attend the funeral of Mr Loong, a man who had no friends or relatives in Singapore.

I asked her if we could talk about her after she had gone and whether we should change her

name if we did so. She was adamant — if it would help others gain a deeper understanding

about death, then we could certainly go ahead and use her full name with no changes.

We have been running this program for two years now and all of us involved can feel how it has the potential to touch us all and offer something that is greatly needed in

today’s highly medicalised and hurried world — genuine human companionship at the end of

life, especially for those who have no one to give it to them.

Jenny’s life was certainly not in vain. She lives on in the program and touches

every patient we serve. Because of her willingness to embrace NODA, more and more

people have not died alone — this is Jenny’s precious legacy.

Complete Article HERE!

Dying In A Hospital Means More Procedures, Tests And Costs

By

When it comes to the end of life, hospital stays are more intensive and more expensive than alternatives.
When it comes to the end of life, hospital stays are more intensive and more expensive than alternatives.

People who die in the hospital undergo more intense tests and procedures than those who die anywhere else.

An analysis by Arcadia Healthcare Solutions also shows that spending on people who die in a hospital is about seven times that on people who die at home.

The work confirms with hard data what most doctors and policymakers already know: Hospital deaths are more expensive and intrusive than deaths at home, in hospice care, or even in nursing homes.

“This intensity of services in the hospital shows a lot of suffering that is not probably in the end going to offer people more quality of life and may not offer them more quantity of life either,” says Dr. Richard Parker, chief medical officer at Arcadia.

Arcadia analyzed all the Medicaid claims data for a private Medicaid insurance company in one Western state and detailed how many billable medical procedures each patient received and where. Patients in hospitals were billed for far more medical interventions in the last days of their lives than people who died in other settings. The company declined to name the state or company.001

The study showed that 42 percent of patients died at home at a cost of about $4,760 for their last month of life, while 40 percent died in a hospital at a cost of $32,379. Dying in a nursing home was the second most expensive locale, inpatient hospice was third and an emergency room was fourth.

“In the end, everyone died. They all died,” Parker tells Shots. “If we look at this retroactively, retrospectively — and we could go back and ask people — I bet most of them would say I’d rather be home with my family.”

Parker says the cost of hospital deaths paid for by Medicare or private insurance are likely even higher because they pay doctors and hospitals more for their services.

Many studies have shown that people, when asked, say they’d prefer to die at home rather than in a hospital. However, those wishes aren’t always realized if a person hasn’t given clear instructions to a doctor or family member.

Parker says hospitals are designed to cure people who are ill rather than to allow people to die peacefully.

“The culture of American medicine today and for the last several decades is to keep treating patients regardless of the quality of life,” he says. “A lot of physicians have been reluctant to admit that the patient’s life is coming to an end.”

The picture is more complicated than the data show, says Dr. Lachlan Forrow, a professor of medicine and medical ethics at Harvard University.

Many patients move from home to hospice to hospitals and back during the last 30 days of life. And some may end up in the hospital because their pain or symptoms weren’t adequately controlled at home.

Still, he says, hospitals are just not good at caring for dying people.

“We do lots of very expensive things in hospitals to people in the last part of life who would rather be home, and we do those in part because in the hospital they get paid for,” he says.

It’s the only way to justify keeping in a hospital the people who need around the clock nursing care but can’t get it at home.

“If we really tried to make sure people at home could have what they needed at home, we could take better care of them, with less medical system-caused suffering, at lower cost, sometimes much lower cost,” he says.

Complete Article HERE!