Tagged: American Cancer Society

Hospice enrollment policies contribute to underuse of care

Hospice enrollment policies contribute to the underuse of hospice care in the U.S., according to new findings published in the journal Health Affairs. Findings from the first national survey on hospice enrollment policies found 78 percent had at least one policy restricting care access for high-cost patients.

Although almost all Americans live within close proximity to a hospice, more than half of patients eligible for the care die without it. There are more than 3,500 hospice providers in the U.S.

Some 600 hospices were studied, and according to researchers, “patients with potentially high-cost medical care needs, such as chemotherapy or total parenteral nutrition,” had a greater likelihood of facing the restrictions. Limited enrollment policies were identified in both for-profit and nonprofit hospices. These restrictive policies include not receiving chemotherapy, total parenteral nutrition, blood transfusions, an intrathecal catheter, radiation therapy, tube feedings or requiring a primary caregiver at home.

“It represents a barrier to people who want hospice care but can’t receive it,” said lead author Melissa Aldridge Carlson, a palliative care researcher at the Mount Sinai School of Medicine.

The aim of hospice care is to manage the pain and symptoms of the terminally ill so that their last days are spent with dignity. The care is not intended to treat the disease.  Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less. Medicare states that to elect the Medicare hospice benefit, an individual “waives the right to receive all other Medicare covered services for the terminal illness and related conditions.”

Hospices may restrict access because of current Medicare reimbursements, which account for more than 80 percent of hospice revenue. The reimbursements do not cover treatments related to a patient’s terminal illness, so a hospice must pay for it. As Carlson points out, the average per diem reimbursement is only $140 per day.

The researchers explain, “many patients with terminal illnesses can benefit from using oral chemotherapy for palliative rather than curative purposes; radiation; or blood transfusions for treatment- or disease-related low blood cell counts.” Any one of these treatments can cost more than $10,000 a month.

Open access policies allow enrollment of those who are not yet eligible for the Medicare hospice benefit, anticipating that they will remain with the hospice when they do become eligible. Patients receive the medical comfort and social support available through hospice while simultaneously retaining access to medical treatments for their disease.  Such patients may be covered by private insurance plans or pay for the care out of pocket.  However, initial reports indicate that the cost of caring for patients enrolled through open access policies is generally absorbed by the hospice provider.

The authors conclude that increasing the hospice per diem rate for patients who require complex palliative treatments and removing the Medicare hospice benefit limitation on concurrent care may enable more hospices to expand their enrollment to patients who need and want it.  Providing hospice services in a cost effective manner for those whose treatment plans include concurrent life-extending and palliative care is the subject of the a pilot project funded by section 3131 of the Affordable Care Act, although results for this pilot project are years from completion.

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What is palliative, hospice care?

Despite its growing popularity in hospitals, most Americans remain unaware of the comfort and benefits palliative care can provide some terminally ill patients.

“There is a clear need to inform consumers about palliative care and provide consumers with a definition of palliative care,” researchers commissioned by the Center to Advance Palliative Care advise. According to Public Opinion Research on Palliative Care, seventy percent of the general population doesn’t know anything about palliative care, and 14 percent were “somewhat knowledgeable.”

The researchers also found that it is difficult to inform physicians about palliative care, because they often wrongly equate it with hospice or end of life care.

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Palliative care becoming more popular

Palliative care is treatment that enhances comfort and improves the quality of life for patients in life’s last phase. No therapy is excluded from consideration, according to the National Hospice and Palliative Care Organization (NHPCO).

Palliative care is becoming increasingly widespread. There are more than 1,600 hospitals that have palliative care programs in the U.S., according to Dr. Diane Meier, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine. Some 85 percent of large hospitals have a palliative care team. Sixty-seven percent of small hospitals have programs.

Dr. William H. Frist, a heart transplant surgeon and former U.S. Senate Majority Leader, recommends palliative care. ”[A] brand new field in medicine is making chronic, agonizing, and even terminal illnesses much more manageable… palliative care has emerged as the best solution for those facing serious, painful diseases, and introduces the very real possibility… that we can now live with these diseases for a long time,” he wrote recently for The Week.

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Palliative care also costs much less than aggressive end of life regimens. Patients who receive palliative care services cost hospitals between $1,700 and $5,000 less per admission, according to findings published in the Archives of Internal Medicine.

Hospice care remains overlooked

Hospice care is different from palliative care; its aim is to manage symptoms so that a person’s last days are spent with dignity and quality. The care is not intended to treat the disease but the person, according to the American Cancer Society.

Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less.

“Many people believe that hospice is only for people who have cancer. This may be due to the fact that many of the patients cared for in the early days of hospice were cancer patients,” Becky Hillier, public relations director for Rocky Mountain Hospice, wrote for the Montana Standard. Less than 25 percent of hospice patients admitted to the hospice are cancer patients.

The NHPCO reports that 36 percent of hospice patients die or are discharged within seven days of treatment. Many terminally ill suffer more than they need to because they wait to enroll in a hospice program.

“We continue to see more dying Americans opting for hospice care at the end of their lives, yet far too many receive care for a week or less,” said the NCPCO’s J. Donald Schumacher. “We need to reach patients earlier in the course of their illness to ensure they receive the full benefits that hospice and palliative care can offer.”

One reason the terminally ill wait for hospice, he said, is due to the misconception that hospice means giving up.

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Telling your child about terminal illness

Hiding terminal illness from children can cause unnecessary stress on parents, confusion and anger for children, and a lack of much needed family support during treatment or end of life care, writes the American Cancer Society.

Clinical psychologist, author and Huffington Post writer Joseph Nowinski argues that children know more about death and dying than parents think, so they should be told the truth about a parent’s illness. Nowinski asserts that children have an idea of what death is, often understood in abstract from fairy tales or in real life from school.

Pam Wolf / NY Kids Club

“My 10-year-old daughter, for example, surprised me one day with this knowledge. When told that an older cousin had been diagnosed with leukemia, she replied, ‘I know about leukemia. A girl in my class has it,’ ” Nowinski notes.

The American Cancer Society recommends telling children about terminal illness in stages to help protect them. “Children need to be told the truth in manageable doses and given a chance to adjust to what they can understand while still going about their everyday lives.”

Stages are important, experts say, because children comprehend time differently than adults. Children’s egocentric worldview can be difficult to penetrate, especially when death is imminent. “Because a child’s concept of time is so different from an adult’s, your children may not cope well with many months of waiting for a parent to die. So talk to them gradually and only when you are fairly certain that this will happen in the near future, as in days or weeks,” the American Cancer Society recommends.

Nowinski does not advocate blunt and aggressive talks with children. Instead, he encourages nuanced and age-appropriate discussions. The type of discussion should depend on the child’s emotional, cognitive and social development.

While it may be tempting, he says, never give a child more information than he or she can absorb. Nowinski advises parents to remember that children are sensitive to the emotional moods and non-verbal communications of adults. He writes, “they sense when a parent is upset … So it makes sense to us to open communication rather than avoiding it.”

The American Cancer Society also advises that children need to be told the truth about terminal illness, because they need to be prepared for what may happen. Not preparing a child for a parental death can make the child feel unimportant, or even afraid of dying.

Perhaps the most traumatic unintended effect of not discussing illness with a child is that the child begins to believe it is his or her fault. “No parent intends this, but because children often cannot explain what they think and how they feel, not preparing them leaves them alone to make sense out of this critical event in their lives,” according to the American Cancer Society.

Similarly, ABC News parenting contributor Ann Pleshette Murphy spoke to children of parents with terminal illnesses in light of the cancer diagnosis of entertainment critic Joel Siegel. He had a son who was 3-years-old at the time. ”It is so natural for parents to want to protect their kids,” Murphy says.

She talked with 16-year-old Ted Summers, who had some advice. “Tell your kid what is going on and everything that you know and all the consequences because a kid’s imagination wanders on and they, you know they worry about a bunch of things,” Summers told her.

The teen did not respond well to the shock of his own mother’s chemotherapy. “The first time I saw her she didn’t have any hair, and I got mad at her and I yelled at her and I said ‘You’re not my mom, I don’t know who you are.’ ” A change of appearance, for example, can make a child angry, reports ABC.

Besides avoiding shock, there are other benefits to telling children about terminal illness and death. Sometimes, children help distract parents from dwelling on illness. According to Murphy, “Some parents say that the most astonishing thing about cancer was learning how to survive it from their children.”

Seven-year-old Noris Weston talked Murphy about how he helps his mom with her terminal diagnosis. “Some of the things I do to make her feel better is hug her, kiss her, rub her back.”

Ten-year-old Andrew Pavia was able to become more confident after learning of his mom’s illness. “I had a lot more responsibility than I did before, and I felt that after that I could basically get through anything.”

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