Tagged: Mount Sinai School of Medicine

Dying at home may be more difficult than expected

Extensive planning is necessary for those determined to help their loved ones die peacefully at home, health care reporter Susan Seliger writes for The New York Times’ blog on aging. Most Americans say they want to die say “at home” when asked,  but both the patient and caregiver’s well being must be considered.

Investing in the right equipment and preparing documents may overwhelm some caregivers, and although professional help is available, each patient’s circumstances are different.  Seliger has prepared a list of 12 tips to help them fulfill their final wishes.

Perhaps the most important consideration is making room for the bed. “A lot of people put the patient in a family room where there is more space, or the dining room if it’s closer to a bathroom,” said Dr. Stacie K. Levine, a geriatrician and palliative care physician at the University of Chicago. She also recommends putting the bed on the first floor of the home to prevent strenuous movements.

The pros and cons of using a hospital bed, Seliger says, should be carefully considered due to the emotional impact that sleeping apart from a spouse can bring. She advises patients with dementia or  cancer who are not that mobile to choose a bed with an air compression mattress in order to to prevent bedsores.

Other suggestions are simple comfort adjustments, such as cushioning the patient’s favorite chair or buying earphones for the hearing impaired. Spring pressure adjustable curtains provide privacy.

Caregivers may also make use of hospice during the last stages of care. “A good hospice team not only helps the caregiver figure out a plan for care but arranges for Medicare approval and payment,” Seliger writes.

“The larger the hospice, usually the more services for the patient and caregiver,” said Dr. R. Sean Morrison, director of the National Palliative Care Research Center at the Mount Sinai School of Medicine. ”Ask for their daily patient census – several hundred patients per day is a good size.”

“What I see that prevents people from being able to stay at home [to die] is not their medical needs but the needs of their caregiver — can the caregiver really help, are there resources to help, or is that person going to be overwhelmed?” Morrison told Seliger.

“Respite care” for the caregiver may help with overwhelming stress. Respite care pays for up to five days of patient care in a nearby medical facility so the caregiver can take a break or even go on a vacation, said Lori Mulligan, senior director of development marketing and community services at Gilchrist Hospice.

Still, hospice care remains underutilized. As LMM previously reported, 36 percent of hospice patients die or are discharged within seven days of treatment.  Many others suffer more than they need to due to hospice enrollment policies. 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.

Despite the work, home deaths may be less traumatic than hospital deaths, according to a 2010 study published in the Journal of Clinical Oncology. Some 300 adults with terminal cancer and the same number of caregivers were studied. Among the caregivers, those whose loved ones did not die at home were about five times more likely to have post-traumatic stress disorder after six months than those whose loved ones died at home.

Learn more about dying at home from WebMD.

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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.

Public Opinion Strategies

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.

Public Opinion Strategies

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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End of life costing more than total assets of seniors

A quarter of Medicare recipients spend more than the total value of their assets on end of life care, according to a new study published by the Mount Sinai School of Medicine.

Deductibles, co-payments and home care are not covered by Medicare. “Prior to this study there was not a lot of data on the extent of out-of-pocket spending,” said study author Amy S. Kelley. “I think a lot of people will be surprised by how high these out-of-pocket costs are in the last years of life.”

The Washington Post / Wonkblog

The study relied on data from 2002-2008, which was collected from the Health and Retirement Study and supported by the National Institute on Aging and the Social Security Administration. Researchers used data on 26,000 Americans over the age of 50 and 3,209 Medicare recipients during their last five years of life.

The study found that 43% of Medicare recipients spend more than their total assets without the value of their home included. More than 75% of respondents paid at least $10,000 in out-of-pocket expenses for end of life care.

Patients suffering from dementia or mental illness often pay more for their care, because special living arrangements are needed. The amount of spending varied by diagnosis. Science Codex reports: ”Those with dementia or Alzheimer’s disease spent the most for health care, averaging $66,155, or more than twice that of patients with gastrointestinal disease or cancer, who spent an average of $31,069.”

The Washington Post / Wonkblog

The study concluded that the elderly patients facing end of life issues are at serious financial risk from health care related expenses. “A new generation of widows or widowers could face a sharply diminished financial future as they confront their recently-depleted nest egg following the illness and death of a spouse,” Kelley is quoted in The Washington Post.

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