“She had the best of care for five months,” says Turner, a District resident. “A hospice licensed practical nurse came first thing in the morning to help change complex dressings, a primary nurse visited several times a week, there was an on-call nurse to help address pain-control questions in the middle of the night, plus a social worker and a chaplain. It took all of us to get through those weeks.”

Still, Turner tells families, she had to bear much of the caregiving, even taking a leave of absence from her job. “I treasured that time, but it was physically and emotionally exhausting. Hospice made it doable, but the truth is, it was still a lot of hard work.”

Some families, she says, may not be able to bear that burden, certainly not without hiring extra help. But, she says, “the hospice gave me the skills and confidence to do what I wanted so badly to do for my mother. I will always be grateful.”

Introduced to the United States in the 1970s, hospice care is becoming an increasingly common treatment. Last year, 1.65 million people received hospice care, up from just more than 1 million in 2004, according to the National Hospice and Palliative Care Organization. In addition, there were more than 5,500 programs in the U.S. last year, compared to 3,100 in 2000.

Although the growth in hospice programs has given patients and their families more choices than ever, a recent into the industry found widespread concerns about the quality of care. The Post cited numerous complaints, noting that although hospices are supposed to provide continuous nursing care to patients whose pain or symptoms are out of control — commonly called “crisis care” — one in seven do not.

Unfortunately, there is no federal rating system — as there is for hospitals and nursing homes — that can help consumers make educated choices about the hospice they select.

For many families, hospice is an unfamiliar concept that prompts fear and questions, including where, why and even when someone should receive hospice care. To help patients and their caregivers, here are some hospice basics:

What Is Hospice Care?

Hospice is not a particular place, like a hospital, but a service that provides end-of-life care and support to the dying and their families, most often in a patient’s home. By signing up for hospice, patients generally agree to stop all disease-fighting treatments, such as chemotherapy and radiation, although some hospices allow such therapy if it is to help manage symptoms, such as pain or problems breathing.

One of the hospice’s primary goals is to alleviate pain. Through a team of caregivers — doctors, nurses, social workers, grief counselors, spiritual counselors, home health aides and volunteers — the hospice provides comprehensive care, including drugs, medical supplies and equipment. It instructs families on patient care and even provides special services such as physical therapy and psychological counseling.

“If we can manage and alleviate pain, we can help reinvigorate patients to help them accomplish whatever it is they want to do in their remaining days, whether it’s making peace with an estranged sibling, attending the wedding of their grandchild — or just going out to eat or fish,” says Malene Davis, president of Capital Caring, one of the first hospices in the Washington area. It now cares for about 1,200 patients a day.

How Much Care Does Hospice Provide?

Comprehensive care generally does not mean around-the-clock service, although many hospices provide 24/7 care when the patient is in crisis or near death.

“The hospice will teach families how to care for a patient, address their concerns and answer questions, but it does not take over the caregiving,” says Dale Lupu, an associate professor at George Washington University’s Center for Aging, Health & Humanities. “Someone on the hospice staff should be available by phone 24/7 in case there’s a crisis. But for hour-by-hour, day-to-day care, the family has to figure out a way to be involved,” even if it means hiring a private nurse or home health aide.

That’s one reason why hospice care may not be for everyone. “Families have to look within themselves and ask if they are comfortable being part of the dying process,” says Linda Kunkel, director of marketing and business development for Care Options, a Northern Virginia care-management firm. “It can be very gut-wrenching and, for some people, very hard.”

Who Pays For Hospice Care?

Medicare covers most hospices for its beneficiaries. Private insurance plans and HMOs also generally pay for hospice care, but they may have a preferred provider. Check with your insurer before you begin your hospice search.

In some cases, a small co-pay — such as $5 or 5 percent — may be required for medication, inpatient facility care and/or respite care.

Additionally, most hospices offer financial help for families in need. So make sure to discuss any financial concerns in your initial meetings.

If Hospice Is Not A Place, Where Do I Get Hospice Care?

Nearly two-thirds of hospice patients die at their homes, a nursing home or an assisted-living facility.

For patients who can’t be cared for at home — perhaps they live alone or have complications that can be treated only at a health-care facility — some hospices have inpatient facilities in freestanding centers or specially designated sections in hospitals or nursing homes.

Why Would I Want Hospice Care? Can’t My Doctors And Local Hospital Adequately Meet My Needs?

Surprisingly no, hospice experts say.

“The traditional medical approach is cure, cure, cure; but when a person is dying, he or she may need a different approach,” says Linda Adler, head of Pathfinders Medical, a California health-care advocacy firm that helps patients with complicated medical diagnoses. “The patient needs someone who’s willing to move the conversation from finding a cure to having best quality of life in the midst of an illness, someone who’s not afraid to talk about the end of life and provide compassion in the final days. Most physicians aren’t trained to do that.”

Hospice caregivers also have in-depth training and experience in palliative treatments for pain management. “Most doctors are not adequately trained in pain management, and the quality of pain control in hospitals and nursing homes is very uneven,” says Naomi Naierman, who was the president of the American Hospice Foundation before it closed last year.

When Should I Start To Think About Hospice?

Most hospices require an order from the patient’s physician as well as approval from the hospice medical director. Both must certify that the patient has six months or less to live if the illness runs its normal course. However, if a patient outlives that time, he or she can be “recertified” to continue receiving hospice care.

But experts in end-of-life care say most Americans need to start thinking about hospice long before the final six months is near. As the American Cancer Society notes on its website: “One of the problems with hospice is that it’s often not started soon enough. Sometimes, the doctor, patient, or family member will resist hospice because he or she thinks it means you’re ‘giving up,’ or that there’s no hope. This is not true. If you get better or the cancer goes into remission, you can leave hospice and go into active cancer treatment.”

Indeed, hospice experts say many people leave hospice, a situation that the late humorist Art Buchwald made famous when recounting his own discharge from a hospice. Patients can then be readmitted to hospice when their conditions deteriorate again.

J. Donald Schumacher, president of the National Hospice and Palliative Care Organization, says patients should discuss hospice options as early as they are diagnosed with a potentially fatal disease. “Don’t wait for the doctor to begin the conversation. Even if you agree to aggressive therapy, ask what are the plans if you don’t return to your optimum health.”

Are All Hospices The Same?

No; they vary greatly.

An increasing number of hospice organizations are for-profit, a distinct change from the early days of the hospice movement when they were mostly nonprofit. Today, 65 percent of hospice organizations are operated as for-profit companies, up from 34 percent in 2000.

Being a for-profit company is not inherently bad, but many of the complaints about substandard service have been leveled at for-profit hospice firms, The Post investigation found. The Post reported that the typical for-profit spent less on nursing and was less likely to have sent a nurse in a patient’s last days of life.

Still, Adler of Pathfinders Medical says consumers shouldn’t necessarily refuse to use a for-profit concern. “There are bad hospices, just like there are bad doctors” in both for-profit and nonprofit organizations, she says. “There are also great hospices in both kinds of groups. That’s why people need to do their homework.”

How Do I Find A Good Hospice?

First, seek recommendations from health-care providers and specialists such as geriatric-care managers. Ask which hospice they would use for themselves or a loved one.

Next, call the recommended hospices and ask questions about the issues that matter most to you, such as:

— How often do their caregivers come to visit? (A nurse’s aide should visit about three times a week and a nurse or doctor once a week, Naierman says.)

— Are their doctors and nurses certified in palliative care?

— Is there crisis care? How fast can a caregiver get to your home in case of a crisis? Will they come at any time, even 3 a.m. Saturday?

— Will the patient’s primary doctor still be involved in the medical care?

— Will a nurse or clinician be in the home when the patient is actively dying? (“The answer should be yes,” Naierman says. “If it is anything but yes, run, don’t walk, away.”)

— Is there an inpatient facility if the patient needs extra care? Is it conveniently located?

— Are there limits on radiation and chemotherapy, even if it’s to control pain? What about IVs, dialysis or blood transfusions?

— How does the hospice handle new health problems that are curable, such as urinary tract infections or pneumonia?

— What is expected from family members? What will they be required to do? Give medicine, including shots? Bathe the patient?

— Is respite care – providing relief and time off for caregivers – offered?

“Having a conversation with the hospice admission people helps you get a feel in advance on how receptive they will be to your needs,” says Naierman, who helped develop to ask a hospice.

Are There Any Other Criteria To Judge The Quality Of A Hospice?

Yes. Here are some details to look for:

— Accreditation status. Three organizations — the Joint Commission, the Accreditation Commission for Health Care and the Community Health Accreditation Program — inspect and approve hospice programs.

“I would always lean toward an accredited program when available because it speaks to a program’s willingness to open itself to review and, hopefully, improvement,” says Lupu, who notes that only 40 percent of hospices are accredited.

— Age and patient load. “Experience — gained over time and gained over a number of cases — usually helps build both individual clinician expertise and organizational/team expertise,” Lupu wrote in a , a blog about hospice and palliative medicine. “Very new and very small hospices are unlikely to have the breadth of experience and the depth of resources to assist with challenging or unusual circumstances.” She suggested that patients should generally lean toward an organization with at least five to 10 years of experience that handles at least 80 patients a day.

— “Live discharge rates,” which is the proportion of people who leave hospice care before dying. A large number of departures may signal that patients were unhappy with care and services. “I’d select a hospice with a live discharge rates in the 10 to 20 percent range,” Lupu says.

Where Can I Go For Additional Help?

There is a lot of information on hospices on the Internet, including:

— The website and its page.

— The American Hospice Foundation’s educational .

— The on hospice care.

— The Washington Post’s .

This article was produced by Kaiser Health News with support from .

This <a target="_blank" href="/aging/learning-about-hospice-should-begin-long-before-you-are-sick/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

This KHN story was produced in collaboration with

Call it a wonky version of “American Idol” — or, perhaps more aptly, “Research for a Cause.” Four Georgetown University Medical Center scientists recently delivered 15-minute sales pitches about their work, hoping to win money from an unusual panel of judges: local residents who are not experts on science.

The first scientist showed cartoonlike drawings to explain how osteoporosis occurs. The second aired a video of a kidney transplant. The third projected a CT-scan image of the brain of a U.S. soldier severely injured in Iraq. The fourth displayed a photo of a tumor-ridden liver, a picture so graphic that she warned her audience that some might want to avert their eyes.

To become a judge, each individual agreed to donate at least $1,000 to the medical center. In return, the donor received a chance to review a handful of proposals by Georgetown researchers and vote for a top choice. The two projects garnering the most support each got a grant of $35,000. Donors also receive periodic progress reports on the studies and a tour of the labs.

The program, called Partners in Research, was launched by Georgetown in 2011 as part of an effort to develop new ways to finance biomedical research.

“Without a great track record or good preliminary data, it’s increasingly hard to win funding” from the National Institutes of Health or private foundations, says Vivien Marion, a senior director in the medical center’s office of advancement. In fact, the odds of winning an NIH grant have been steadily decreasing; in the past two years, less than 20 percent of applications have received funding, down from 30 percent 10 years ago as NIH’s budget for research grants has been flat while the number of applications has increased.

Partners in Research was designed to provide just enough funds to innovative projects to generate data that could “put researchers on a path to win more money” from other sources, says Marion, who runs the program and has contributed $1,000 to it each year.

This year, 59 partners donated $70,000; they selected their top funding choices last month.

This year’s winners were a project that explores new strategies to prevent osteoporosis and one that examines whether a drug used to treat hypertension and diabetes can reduce damage caused by traumatic brain injuries. The runners-up: a proposal to evaluate a new technology that might help doctors determine if donor kidneys are healthy enough for a transplantation and a study to find new molecules in the lab that could block a protein associated with cancerous tumor growth.

“You feel bad that you can’t support them all,” said Bette Kramer, who hosted a wine-and-cheese party to recruit donors.

“I give to a lot of different causes,” said Kramer, a retired District resident. “But this is personally gratifying because it’s an exciting way to participate in what’s going on in science and medicine today. I view this like venture capital, as an opportunity to provide funds for scientists looking for a breakthrough.”

The partners program reflects a growing trend of raising funds through “crowdsourcing,” in which individuals pool multiple small donations for greater impact. Internet sites such as Kickstarter, for example, have raised money from a large number of participants to fund projects proposed by various start-ups and researchers. Other Web sites, including GiveForward.com, GoFundMe.com and YouCaring.com, have allowed patients to solicit money to help underwrite their medical costs.
For people who prefer personal contact with fellow donors, there are giving circles, where individuals meet to select charities to receive their pooled donations.

Partners in Research grew out of a Georgetown promotional campaign designed to generate donations. In 2009, the university launched Doctors Speak Out, a community education program that hosts discussions of health issues. At these quarterly luncheons, university scientists detail how their research touched on these issues.

Donations were not required, but they were not discouraged, either. Many attendees would make contributions, often designating the funds for two research on one of the topics discussed. “The money was so diluted, it didn’t make enough of a difference,” Marion says. Trying to create a bigger impact, she thought of the growing popularity of giving circles and hoped a similar concept could work for Georgetown’s biomedical research projects.

Support has remained steady. The first year, 63 partners raised $75,000, which was split among three projects. In 2012, 62 partners who raised $70,000, which was shared by two projects.

For researchers, it’s a competitive process just to win a spot on the presentation platform, with each proposal undergoing a peer review by other Georgetown researchers. The first year, a dozen projects were reviewed and five finalists selected. Last year, there were nine applications and four finalists. This year, 34 applications were winnowed down to a final four that went before the judges.

Still, the process is easier than seeking other funds. “There’s less red tape, and if you’ve got a new, innovative idea but no pilot data to support it, this program gives you an opportunity to start building data to support outside funding in the future,” said Adam E. Green, an assistant professor of psychology whose team won one of the first year’s awards, for research into Alzheimer’s disease. Now his group is writing applications for outside funding. “I’m not sure how else we would have gotten to this point,” he said.

Mark Burns is one of this year’s winners, for his work on brain trauma. “This first step is an important one that will allow us to test our principal hypothesis and enable us to generate the exhaustive preliminary data that is required to secure a large research grant,” said Burns, an assistant professor of neuroscience.

Similarly, the grant enables scientists to follow their research into areas not initially expected. Rebecca Riggins, an assistant oncology professor, said she was able to expand her study of a promising breast cancer drug when tests showed it was also effective at killing brain tumor cells. Without the Partners in Research  grant last year, Riggins said, “I’m not sure we would have been able to pursue the brain tumor research; all that work would have been an orphan.”

None of the researchers has obtained outside finding yet, but they are working toward it.

Researchers acknowledge that the competition before the judges might turn into a popularity contest, with those that have the most dynamic and/or sympathetic presentation winning the funds. But, Robert Clarke, dean for research at the medical center, said, “It really doesn’t matter. It’s all good science, so not a penny will be wasted.”

The winners cite an additional benefit: personal engagement with the donors. Says Nady Golestaneh, director of research in the ophthalmology department, says, “The money is very useful, nice, but the personal donor support makes us even more motivated in our research.”

This <a target="_blank" href="/news/american-idol-style-grant-funding/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">