Shedding New Light On Hospice Care

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Woman and caregiverEarlier this year, Kathy’s 86-year-old mother was hospitalized in Colorado after a fall. As she rushed to her side, Kathy asked for a consultation with a palliative care nurse.

“I wanted someone to make sure my mother was on the right medications,” Kathy said.

For all her expertise — Kathy Brandt advises end-of-life organizations across the country — she was taken aback when the nurse suggested hospice care for her mother, who has advanced chronic obstructive pulmonary disease, kidney disease and a rapid, irregular heartbeat.

“I was amazed — really?” Kathy said, struggling with shock.

It’s a common reaction. Although hospices now serve more than 1.4 million people a year, this specialized type of care, meant for people with six months or less to live, continues to evoke resistance, fear and misunderstanding.

“The biggest misperception about hospice is that it’s ‘brink-of-death care,’” says Patricia Mehnert, a longtime hospice nurse and interim chief executive officer of TRU Community Care, the first hospice in Colorado.

In fact, hospice care often makes a considerable difference for those with months to live. “When someone is further out from death, we can really focus on enhancing their quality of life,” says Rachel Behrendt, senior vice president of Hospice of the Valley, which serves the Phoenix metropolitan area.

New research confirms that hospice patients report better pain control, more satisfaction with their care and fewer deaths in the hospital or intensive care units than other people with a similar short life expectancy.

What should seniors and their families, the largest users of hospice care, expect? It’s fairly well understood that patients forgo curative therapies in favor of comfort care when they enter hospice. Here are additional features:

Four Levels Of Care

Hospice providers are required to offer routine care in patients’ homes (this includes seniors who reside in assisted living or nursing homes); continuous care at home for people with out-of-control symptoms such as pain or breathing problems; inpatient respite for families that need a break from caring for a loved one; and general inpatient care for medical crises that cannot be handled in any other setting.

With continuous care, a nurse must be on-site in the home for at least eight hours a day, helping to bring symptoms under control. Usually, this will happen in one to three days. Respite care has a maximum limit of five days.

Some hospices have their own general inpatient facilities and “it’s a common misconception that patients are sent to inpatient hospice to die,” says Jean Cohn, clinical manager at Montgomery Hospice’s inpatient facility, Casey House. “In fact, we’re frequently fine-tuning patients’ regimens in inpatient hospice and sending them back home.”

Intermittent Care At Home

Routine care at home is by far the most common service, accounting for about 94 percent of hospice care, according to the latest report from the National Hospice and Palliative Care Organization.

While services vary depending on a patient’s needs, home care typically involves at least one weekly visit from a nurse and a couple of visits from aides for up to 90 minutes. Also, a volunteer may visit, if a patient and family so choose, and social workers and chaplains are available to address practical and spiritual concerns.

Hospices will provide all medications needed to address the underlying illness that is expected to cause the patient’s death, as well as medical equipment such as hospital beds, commodes, wheelchairs, walkers and oxygen. Typically, there is no charge for such gear, although a copay of up to $5 per prescription is allowed.

What families and patients often do not realize: Hospice staff will not be in the home every day, around the clock. “Many people think that hospice will be there all the time, but it does not work that way,” Brandt says. “The family is still the front line for providing day-to-day care.”

In assisted living, patients or their families may have to hire nursing assistants or companions to provide supplemental care, since hands-on help is limited. In nursing homes, aides may visit less often, since more hands-on help is available on-site.

Self-Referrals Are Allowed

Anyone can ask for a consultation with a hospice. “We get many self-referrals, as well as referrals from family and friends,” says Behrendt of Hospice of the Valley. Usually, a nurse will visit and do a preliminary assessment to determine if a person would qualify for hospice services.

To be admitted, two physicians — the patient’s primary care physician and the hospice physician — need to certify that the person’s life expectancy is six months or less, based on the anticipated trajectory of the patient’s underlying illness. And re-certification will be required at regular intervals.

A Person Can Choose Their Physician

A person has a right to keep their primary care physician or they can choose to have a hospice physician be in charge of their medical care.

At JourneyCare, the largest hospice in Illinois, “we prefer that the patient retains their primary care physician because that physician knows them best,” says Dr. Mark Grzeskowiak, vice president of medical services.

These arrangements require close collaboration. For instance, if a nurse observes that a patient with heart failure is experiencing increased shortness of breath, JourneyCare staff will get in touch with that patient’s primary care physician. The physician is responsible for altering the treatment plan; the hospice is responsible for implementing that plan and giving clear instructions to the patient and family.

Concerns About Medications

“There’s a misconception that a person is going to be medicated to a highly sedated state in hospice,” says Dr. Christopher Kerr, chief executive officer and chief medical officer for Hospice Buffalo Inc. in upstate New York. “The reality of our primary goal is to increase quality wakefulness. Managing these medications is an art and we’re highly experienced.”

Family caregivers are on the front line since they are responsible for administering pain medications such as morphine. “Absolutely, there’s a great deal of fear and anxiety around all the issues associated with giving medications,” says Cohn of Montgomery Hospice. “We try to reassure caregivers that the doses we start with are very small, monitor how the patient reacts, and go deliberately slow.”

Because most hospice stays are short — the median length is only 17 days — and because the diversion of painkillers from people’s homes is a risk, doctors have begun writing prescriptions for a week or two at a time, says Judi Lund Person, vice president of regulatory and compliance for the National Hospice and Palliative Care Organization. If concerns exist, hospices can have a lockbox for medications sent to the home.

Discharges Are Possible

Estimating when someone is going to die is an art, not a science, and each year hundreds of thousands of hospice patients live longer than doctors anticipate.

If physicians can document continued decline in these patients — for instance, worsening pain or a noticeable advance in their underlying illness — they might be able to re-certify them for ongoing hospice care. But if the patient is considered stable, they will be discharged, various experts say.

In 2015, nearly 17 percent of hospice patients were so-called live discharges, according to a report from the Medicare Payment Advisory Commission. Two days before a discharge, hospices are required to give the patient or family members a Notice of Medicare Non-Coverage. Expedited appeals of discharge decisions can be lodged with a Medicare quality improvement organization.

There are no regulatory requirements governing what hospices should do to facilitate live discharges. Some hospices will spend weeks helping patients make arrangements to receive medications, medical equipment and ongoing care from other sources. Others offer minimal assistance.

At The Very End

Almost 1 in 8 hospice patients do not get visits from professional staff during their last two days of life, according to a study published in JAMA Internal Medicine last year. And this can leave families without needed support.

Some hospices have responded by creating programs specifically for people who have a very short time left to live. “We’ve put together a special team for people who are expected to live 10 days or less because that requires a different kind of management,” says Ann Mitchell, chief executive officer of Montgomery Hospice. “Instead of a nurse for every 15 patients, a nurse on this team will have five to six patients and a social worker is available seven days a week.”

“One-third of our patients are here for less than seven days and often we receive them in a crisis,” says Kerr of Hospice Buffalo. “We’ve had to re-purpose our services to address the urgency and complexity of these patients’ needs and that means we have to be ever more present.” Across the board, Hospice Buffalo requires that patients be seen within 24 hours of an expected death.

Want To Live Past 100?

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Centarians

Gertrude Siegel is 101 and hears it all the time. “Everyone says ‘I want to be just like you.’ I tell them to get in line,” she said.

John and Charlotte Henderson, 104 and 102, often field questions from wannabes eager to learn their secrets.

“Living in moderation,” he said. “We never overdo anything. Eat well. Sleep well. Don’t overdrink. Don’t overeat. And exercise regularly.”

Mac Miller, who is 102, has a standard reply.

“People ask me ‘What is the secret?’ The answer is simple. Choose the right grandparents. They were in their 80s. My mother was 89, and my father was 93,” he said.

Genetics and behaviors do play roles in determining why some people live to be 100 or older while others don’t, but they aren’t guarantees. And now, as increasing numbers are reaching triple digits, figuring out the mysteries of longevity has taken on new importance among researchers.

Although those 100 and older make up a tiny segment of America’s population, U.S. Census reports show that centenarian ranks are growing. Between 1980 and 2010, the numbers rose from 32,194 to 53,364, an increase of almost 66 percent. The latest population estimate, released in July 2015, reflects 76,974 centenarians.

“The number of centenarians in the U.S. and other countries has been doubling roughly every eight years,” said James Vaupel, founding director of the Max Planck Institute for Demographic Research in Rostock, Germany.

“When the baby boomers hit, there’s going to be acceleration, and it might be doubling every five or six years,” he said.

Henderson and his wife of 77 years live in Austin in the independent living section of Longhorn Village, a community of more than 360 seniors, many of whom have ties to the University of Texas at Austin. Henderson is UT’s oldest-living former football player, arriving in 1932 as a freshman. They’re the only centenarians in the complex and are a rare breed: married centenarians.

Charlotte Henderson said she believes being married may have helped them reach these 100-plus years.

“We had such a good time when John retired. We traveled a lot,” she said. “We just stay busy all the time, and I’m sure that helps.”

Bernard Hirsh, 100, of Dallas agrees. His wife, Bee, is 102. They married in 1978 when both were in their early 60s and each had been widowed, she for the second time.

“I think it’s been such a wonderful marriage, and we’ve contributed to each other’s benefit,” he said.

Little research exists on the effects of marriage on longevity. One 2015 Belgian study of centenarians born between 1893 and 1903 did focus on their living arrangements during ages 60 and 100 and found “in very old age, living with a spouse is beneficial for men but not for women, for whom living alone is more advantageous than living with a spouse.” The study explained that “living with one’s spouse at the oldest ages does not provide the same level of protection as it does at younger ages. This may be explained by the decline of the caregiver’s own health as the needs of his or her spouse increase. Caregiving could also have negative consequences for the health and economic condition of the spouse who is the primary caregiver, especially for older women.”

However, Vaupel, who directs the Institute’s International Research Network on Aging, said being married is a positive for both.

“Especially if you’re quite old, it’s very helpful to have a spouse. If you’re very old and don’t have a spouse, the chance of death is higher,” he said.

Siegel, who lives in a senior living community in Boca Raton, Fla., outlived two husbands. She never smoked and occasionally has a glass of dry, red wine.

“I am not a big eater. I don’t eat much meat,” said Siegel, who said she weighs 90 pounds and used to be 5 feet tall but is shrinking.

She stays active by walking inside the building about a half-hour each day, playing bridge twice a week and exercising.

“I feel that’s what really keeps my body pretty good. It wasn’t sports. It was exercises,” she said of the routine she does daily twice a day for about 20 minutes.

Miller, of Pensacola, Fla., also outlived two wives.

He was a fighter pilot in the Marine Corps during World War II and spent eight years in active duty, which Miller said “was not so good for me because I sat in the cockpit of a plane for 5,000 hours.”

But, he was active as a youth — running track, playing football and spending hours surfing while living in Honolulu.

Miller is gluten-free because of allergies and doesn’t eat many carbohydrates. He also never smoked. And, he still enjoys a scotch in the evening.

The Hendersons usually have wine or a cocktail before dinner. She never smoked. He quit in 1950.

Hirsh, of Dallas, another non-smoker, attributes his long life to “good luck.”

“I was very active in my business and did a lot of walking during the day. I was not sedentary,” he said.

Now, exercise is limited to “some knee bends every morning to keep my legs stronger.”

“My father died of a heart attack in his early 50s, and my mother died in her early 60s of a stroke, so I don’t think my genes are very good,” Hirsh said.

Geriatrician Thomas Perls, director of the New England Centenarian Study at Boston Medical Center, said research shows that behaviors have had a greater influence on survival up until the late 80s, since he said most people have the right genes to get there as long as their behaviors aren’t harmful. But once people reach the 90s and beyond, genetics play a more significant role.

“To get to these very oldest ages, you really have to have the right genes in your corner,” he said.

As an international leader in the field, Perls’ focus is on finding the right mix of behavior, environment and genetics to produce long lives. His work includes a National Institute on Aging study called the Long Life Family Study.

“There are always questions about environment versus genes,” said endocrinologist Nir Barzilai, founding director of the Institute for Aging Research at the Albert Einstein College of Medicine in Bronx, N.Y. “ It’s really 50-50, no matter how you look at it.”

Barzilai’s studies include centenarians and their children, as well as efforts to slow the process of aging.

Perls said his research and that of Barzilai and others has found commonalities among those who reach the 100-year-old milestone: Few smoke, nearly all of the men are lean, and centenarians have high levels of the “good cholesterol.” Studies show that whatever their stress level, they manage it well. And they’re related to other centenarians or have a parent or grandparent who lived past 80.

These lessons of long life are playing well with the public, who have made changes for the better in the 21st century, Vaupel said.

“We don’t smoke or drink so much, and we’re better at exercise. People are taking better care of themselves. People are better educated, and the more educated know when to go to the doctor and follow the doctor’s advice,” he said, adding that people now tend to have higher income and can spend more on health care and improved diet.

“The most important thing is we’re living longer and living longer healthily,” Vaupel said.