Some of the state’s poorest people in their final days of life are about to face a big cut in health coverage.

Starting February 1st, Medicaid will no longer pay for hospice care in Louisiana.  7News looks into what is behind the falling budget axe and what it means to dying patients.

It has only been three months since Eric Tillman of Lake Charles watched his wife, Cynthia, take her final breaths.  “She had done chemo,” he said, “and the cancer went into remission for a year.”

A diagnosis of stage four ovarian cancer limited his wife’s final days, but hospice care ensured they were not filled with pain and a hospital stay.  CHRISTUS St. Patrick Hospice Nurse Director, Michele Hurley says hospice care allows terminally ill patients to pass away with dignity.  “We work toward having the best quality of life possible for patients that are terminally ill,” she said.

Hurley says her passion is her hospice patients, but state cuts taking effect next month will mean Medicaid patients will no longer have hospice care covered.  “Eliminating the hospice benefit for Medicaid recipients, you’re creating a whole pool of unfunded patients,” she said.

The changes are because of a mid-year budget gap. Medicaid hospice is just one stripped program. Sherrill Phelps with the Louisiana-Mississippi Hospice Association says this will deprive terminally ill patients of the opportunity to die comfortably and with care.  “They’re deserving to have the help and the support and the financial payment to provide that care for those people,” he said.

Louisiana will become one of only two states to eliminate Medicaid hospice. Arizona was in that mix, but has already reinstituted it because it costs more.  “You’re going to pick them up and bring them to the emergency room, to the hospital, which costs considerably more than the $140/day paid for by the state for the Medicaid program,” said Phelps.

State Senator Dan “Blade” Morrish says state cuts were a must to balance the budget, but the Medicaid hospice plan needs to be looked at again.  ”There comes a time in budget cuts when there is a line that you just can’t cross anymore,” he said, “and I think we’ve reached that with the hospice issue.”

Tillman’s hope is that his story puts a face to the program: a beloved wife that passed away peacefully at home.  “They gave us the opportunity to surround my wife with love,” said Tillman, “she was comfortable.  My wife was content.”

These hospice care changes will not affect Medicare, which covers most people over age 60.

There will be a candlelight vigil at the State Capitol steps Wednesday from 4:00 to 6:30 P.M. to protest the elimination of Medicaid hospice.

Hospice care offers the services you want. What stands in the way of more people choosing hospice care, is limited awareness of what services it offers and how to find it. When making a decision about hospice care, it helps to have a good understanding of what hospice is, and what it isn’t. Here are some of the most common misconceptions about hospice, along with the true facts about this special kind of care.

Myth: Hospice is a place.

Fact: Hospice care usually takes place in the comfort of your home, but can be provided in any environment in which you live, including nursing homes, assisted living facilities, and hospitals.

Myth: Hospice means that the patient will soon die.

Fact: Receiving hospice care does not mean giving up hope or that death is imminent. The earlier an individual receives hospice care, the more opportunity there is to stabilize your medical condition and address other needs. Some patients actually improve and may be discharged from hospice care.

Myth: Hospice care starts a few days before death.

Fact: Hospice is not just for the last few days or weeks of life. The benefit is designed to provide care for six months, or longer. For most people, it is a relief to find that there is another source of help and support. Hospice care, at any stage of illness, bur particularly early on, can significantly lighten the burden for both the patient and family.

Myth: Families have to pay for hospice care.

Fact: Hospice care is a Medicare benefit. Most private insurers also cover hospice care as well. Some Hospices have a charity program, which helps to care for all patients, regardless of an individual’s ability to pay.

Myth: Hospice is only for cancer patients.

Fact: A large number of hospice patients have congestive heart failure, dementia, chronic lung disease, or other conditions.

Myth: Patients can only receive hospice care for a limited amount of time.

Fact: The Medicare benefit, and most private insurance, pays for hospice care as long as the patient continues to meets the criteria necessary. Patients may come on and off hospice care, and re-enroll in hospice care, as needed.

Myth: Hospice is just for the patient.

Fact: Hospice focuses on comfort, dignity, and emotional support. The quality of life for the patient, but also family members and others who are caregivers, is the highest priority.

Death is not a comfortable subject for most of us. So, it’s no surprise that many people lack basic knowledge about hospice care. When surveyed, a majority say they would prefer to die in their own home … but three out of four Americans don’t realize that hospice care offers that option.

Lack of information, fears and misunderstandings keep many people from reaping the advantages of specialized end-of-life care. Here are the facts about seven common misconceptions:

1. Hospice is not a place. Hospice is an approach to caring for someone nearing the end of life. While hospice care can be provided in a freestanding facility, hospital or nursing home, it’s most often offered in the person’s home. Many people opt for hospice precisely because they can stay at home with loved ones and pets while receiving care. Essentially, the hospice team comes to you. You’re visited by doctors, nurses, counselors, therapists, social workers, home health aides or clergy as appropriate. Round-the-clock phone support is available to caregivers.
2. Entering hospice does not mean that medical care stops. Hospice care ismedical treatment. In fact, hospice and palliative (pain relief) care is a board-certified medical specialty. The main difference in hospice is that treatment is not intended to cure. Rather, medication or therapies are only prescribed to manage pain or relieve symptoms. The treatment plan is reviewed regularly and revised as needed.
3. Hospice is open to people of any age or condition. Many wrongly believe that hospice is only for cancer patients or the elderly. People with diseases from Alzheimer’s to AIDS can receive hospice care, as can children. The main criterion for hospice is that a doctor must determine that the person is not expected to live for more than six months.
4. Most or all of hospice costs are usually covered by Medicare, Medicaid, HMOs or private insurers. This is a big surprise to many. But several studies have shown that hospice care can greatly reduce the cost of treating terminal illness.Plus, hospice usually costs less than care in hospitals and assisted living or nursing homes. Medicare, Medicaid (in some states) and the Department of Veterans Affairs may cover all hospice costs for those eligible. If you have a private insurer or HMO, you’ll have to ask about specific hospice and home care benefits. Many hospices offer “ability to pay” rates, too, or help low-income families to find community resources to cover costs.
5. Hospice can even accommodate most people with high-level care needs or who live alone. Today’s technology enables most people to receive care at home. The hospice team can arrange home delivery of a hospital bed, oxygen tank, remote monitoring tools or other needed equipment. At-home caregivers are taught how to administer medications and use equipment. If there is no capable live-in caregiver at home, the hospice team can help you find a private nurse or a non-home hospice setting.
6. Hospice care does not “hurry death.” The purpose of hospice is to relieve suffering and to make the end of life more meaningful. Hospice staff encourages and aids the person in completing any unfinished business – legal, emotional or spiritual – that can help in coming to terms with death. Treatment may also include activities like music therapy or journal writing to reduce stress.
7. A referral to hospice should not be seen as a last resort. When a terminal illness is no longer responding to medical treatment, continuing aggressive care can deplete someone even more. Hospice empowers people to choose how to spend their final days and die with dignity and peace of mind. One in three families surveyed in one study said they regretted not getting their loved one into a hospice program sooner.

As doctors, we are taught that death is the enemy. We are here to stop it and if a patient dies, we have failed. That mentality has led to an alarming statistic. According to one study, 60 percent of your health care dollar is spent in the last 30 days of life. Wouldn’t those resources be better spent on prevention and defeating curable diseases earlier in life? Why do we try so hard at the very end? One reason is that we think we can defeat the disease and gift the patient with more time. But there are times when that is not a reality.

One obvious example is the terminally ill. People with Stage 4 cancer. That means they have a cancer which has spread from the local area to a distant location. Cancer starts out in one place, and if it is isolated there, it’s called Stage I. If it erupts from its local area but has not spread to lymph nodes it is Stage 2. If it has spread to nodes but has not spread beyond the region of origin, it is Stage 3. If it has traveled by lymph or through the blood stream to a distant organ, that’s Stage 4, which is as bad as it gets. This is when doctors tell you how long they think you have left.

In a study published in November in the Journal of Clinical Oncology, 1,231 patients with Stage 4 lung cancer were evaluated for their End of Life (EOL) experiences. They considered “aggressive” care to be things such as receiving chemotherapy in the last 14 days of life, ICU stays in the final 30 days and an acute-care hospital stay in their last 30 days.

Researchers found that patients who had EOL discussions before the final 30 days were more likely to receive appropriate hospice care than those who did not have EOL discussions.

The authors wrote: “Given the many arguments for less aggressive EOL care, earlier discussions have the potential to change the way EOL care is delivered for patients with advanced cancer and help to assure that care is consistent with patients’ preferences.”

I have overseen the hospice care of a relative and can tell you firsthand that it is far better than having no plan in place. Hospice nurses and doctors treat the family as much as the patient. But arranging for hospice care sounds a bit like giving up. It isn’t. It’s acceptance of the reality that we all make this journey. Hospice care is merciful and compassionate.

The time to discuss end-of-life care is before the end is near. It is possible to die well.

I wrote last week about the poor choices facing patients, most very old and within six months of death, who need nursing home care after a hospitalization.

Medicare will pay for hospice, the acknowledged gold standard for those at the end of life and their families, and it will also pay for skilled nursing (known in this universe as the “sniff” benefit, for Skilled Nursing Facility or S.N.F.). But only rarely will it cover both at the same time, which creates a financial bind.

Rather than pay hundreds of dollars a day out of pocket for room and board in a nursing home, most families opt for S.N.F. coverage. But they pay a price in other ways: they lose the visits by nurses and aides and social workers, the comfort care, the pain relief and the spiritual support that can make hospice such a godsend, whether patients are at home or in nursing homes.

The study I wrote about, by a team mostly based at the University of California, San Francisco, found ongoing repercussions from this forced decision. People were much more likely to die in hospitals or nursing homes when they used the S.N.F. benefit. Though studies repeatedly find that most people would prefer to die at home, only 11 percent did. But those who did not use S.N.F. were far more likely to be enrolled in hospice – and 40 percent of them died at home.

On the other coast, meanwhile, researchers in Providence, R.I., and Boston exploring some of the same issues have documented still other problems when people nearing death use nursing homes.

This study, published recently by The Journal of the American Geriatrics Society, looked specifically at more than 4,300 patients with advanced dementia who died in nursing homes in 2006 and used the S.N.F. benefitwithin 90 days of their deaths. About a quarter also had hospice care, either at the same time (permitted only when someone has both a terminal condition and another diagnosis, as when a dementia patient also breaks a hip) or before or after they used S.N.F.

Why look at patients with severe dementia? “I tried to focus on the most vulnerable part of the nursing home population,” said the study’s lead author, Susan C. Miller, a health services researcher at Brown University. “They’re almost totally dependent.”

The whole purpose of Medicare’s paying for skilled nursing, recall, is to help patients get stronger and return home, or at least to improve their health. But physical therapy, for instance, may serve little purpose for those who are bed-bound, who are totally incontinent, who can’t feed themselves. “These are people who are on a decline,” Dr. Miller said. “They’re not going to get better.”

Yet they received a lot of medical interventions compared to those in hospice care. Those using S.N.F. were significantly more likely to receive feeding tubes, intravenous fluids, injections and medications — none of which can stop or slow dementia, of course, or are likely to increase quality of life.

“I consider these treatments very aggressive for this group of patients,” Dr. Miller said. Hospice care, on the other hand, lowered the odds of dying in a hospital.

“There needs to be some kind of combined benefit, hospice or palliative care while people are receiving skilled nursing,” Dr. Miller concluded. Otherwise, “there are incentives to give them care they really shouldn’t be receiving.”

People in palliative care and hospice have complained about this restriction for years, and they may want to keep complaining. The Affordable Care Act calls for a demonstration project of “concurrent care,” a three-year experiment allowing up to 15 hospice programs around the country to enroll patients who can also continue to receive all the other services that Medicare covers, including skilled nursing.

Afterwards, an independent evaluation is supposed to determine whether people who are old and ill and close to death can benefit from having hospice and other services together and whether that may even save Medicare dollars.

But the statute doesn’t set a target date, so who knows when or whether this experiment will happen? Too bad, because a lot of patients and families would like to know the answer.