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This time of year can be challenging for those who have a terminally ill loved one. If this friend or family member is in hospice, the holiday season may feel “off” or a little less joyous this year. While there are certainly challenges you will have to face, there are still ways you and your family can celebrate the season with your loved one in hospice. We’re here to provide you with some encouragement to navigate this time of year. Coordinate with hospice staff. Those working in hospice are not just there for the patients during this time, they are also there for the families. Hospice staff serve as a crucial resource for trying times like these and are more than willing to assist. They can help coordinate visiting schedules to work around holiday events, offer suggestions for support groups, and make arrangements for any holiday traditions you’d like to celebrate with your loved one. Among many other tasks, hospice staff are there to aid you this holiday season. Adjust your holiday traditions. While it may seem difficult to change any holiday traditions you have to better suit your loved one in hospice, just know that it will be wroth it. Including your loved ones in these traditions is what the season is all about, so making certain they are a part of some of the traditions you enjoy the most will bring everyone closer together and create a special meaning this year. Above all, enjoy time with your loved ones. We know this may sound hard – maybe even impossible. It’s important to use this time to bring everyone together and create memories while you can. Surrounding yourself with friends and family can serve as a reminder that you are not alone in this process. We’ll leave you with this question – What’s your reason for this season? Is it to cherish another holiday with your loved one?Hospice care is medical treatment and support for those with life-threatening, terminal illnesses. Care is provided by a team of professionals including doctors, nurses, health aides and therapists. Hospice is typically available to those with a life expectancy of 6 months or less. The hospice philosophy emphasizes control of pain and the provision of services that allow a terminally ill patient to remain comfortable at home for as long as possible. The primary goal of hospice care is to provide those that are dying or near death with peace, comfort and dignity as they progress towards the end of life. Since home hospice care is provided outside of a licensed medical facility, and by a combination of medical professionals and family members, there are numerous guidelines that pertain to this type of care. The Virginia Department of Health has stated specific rules and regulations regarding in-home hospice care. Every person involved as part of the unit of care, including the patient themselves, should be aware of these guidelines. Included are procedures regarding provision of care and services, indemnity coverage, criminal record checks and emergency preparedness. For a list of frequently asked questions, visit our Hospice FAQ.Making the arrangements for hospice care can be a daunting task—by definition, it’s a system for making the last days of you or your loved one’s life more comfortable. Keeping the process as simple and stress-free as possible should be a high priority, so below are tips to help you get started. 1. Determine Eligibility and Coverage. First off, you’ll need to determine the patient’s eligibility for hospice care, and their eligibility for coverage under their insurance or other health program. Eligibility in the U.S. is limited to patients with terminal illnesses resulting in a diagnoses of 6 months or fewer to live—the diagnoses must be physician-certified, so make sure that’s handled. For insurance, make sure to take note of limitations, special rules, and any other important factors before you move forward—depending on the coverage, the limitations may be strict or nonexistent, and it’s important to know which moving forward. 2. Decide Upon a Location Hospice care can take place in a number of environments, including the home, a long term care facility, a hospital, or an independent hospice locations. Think carefully of patient needs, coverage limitations, and comfort when making the decision. Staying at home may be most comfortable, but may prove infeasible for patients dealing with certain illnesses. Think carefully on this step, as it will ultimately have a major impact on the hospice experience. 3. Contact Hospice Providers Once you know the limitations of your coverage, and where you want to set up, it’s time to start contacting providers and seeing what they have to offer. Make sure to ask the right questions: Don’t be afraid to ask hard questions and get a good idea of the fine details of the provider’s operation—this is a very important decision you’re making. Take plenty of notes, figure out what’s most important for you or your loved one’s well-being, and make an informed decision. Consider arranging a meeting or visit, as it will help you to compare the offerings, and also give you the insight you need to ask important questions you may not have considered otherwise. 4. Select a Program Once you have your information and know what you should be valuing, it’s time to make a choice. You’ll want to contact the hospice provider and have them begin the process of beginning the program. You’ll want to make sure all the legal, medical, and financial paperwork is clearly understood, signed, and stored away safely—it can be difficult to care much for the fine details at such a time, but keeping clear records of everything will greatly reduce unexpected sources of stress. If you do find yourself having trouble selection a program, make sure to ask around—the patient’s doctor, medical social worker, the local health department, and regional and national health organizations can all provide insight which may prove useful in making your final decision. 5. Make Other Arrangements Make arrangements to ease the process for loved ones—choose one person (if you’re not that person, yourself) to help everyone coordinate visits, keep informed, handle hiccups in the process, and help people with their grief when the time comes to say goodbyes. Coordination will greatly ease the process.A new study in Health Affairs finds that hospice saves Medicare money and reduces hospital and ICU stays near the end of life. The researchers looked at several lengths of stay (days and weeks) as well as patients who stayed about two to three months (53 to 105 days.) It didn’t look at the very long stays that had been in the spotlight as potentially inappropriate, particularly in for-profit settings. But the authors note that efforts to curtail hospice spending and length of stay “may be misguided.” Instead of working to reduce Medicare hospice spending and creating a regulatory environment that discourages continued growth in hospice enrollment, the Centers for Medicare and Medicaid Services should focus on ensuring that patients’ preferences are elicited earlier in the course of their diseases and that those who want hospice care receive timely referral.By PAULA SPAN NYTimes.com 620 Eighth Avenue New York, NY 10018 Copyright 2013 The New York Times Company I’ve often wondered why more families don’t call hospice when a loved one has a terminal disease — and why people who do call wait so long, often until death is just days away. Even though more than 40 percent of American deaths now involve hospice care, many families still are trying to shoulder the burden on their own rather than turning to a proven source of help and knowledge. I’ve surmised that the reason is families’ or patients’ unwillingness to acknowledge the prospect of death, or physicians’ inability to say the h-word and refer dying patients to hospice care. But maybe there’s another reason. A study in the journal Health Affairs recently pointed out that hospices themselves may be turning away patients because of certain restrictive enrollment policies. It’s possible, too, that physicians who know of these policies aren’t referring patients whom the doctors fear wouldn’t qualify. Surprisingly, this randomized national survey of almost 600 hospice programs represents the first broad inquiry into enrollment practices, though it’s been nearly 30 years since hospice became a Medicare benefit. Nearly 80 percent of hospice programs, the study found, reported having at least one policy that could restrict access. “It represents a barrier to people who want hospice care but can’t receive it,” said lead author Melissa Aldridge Carlson, a geriatrics and palliative care researcher at the Mount Sinai School of Medicine. What kind of barriers are we talking about? More than 60 percent of hospices won’t accept a patient on chemotherapy, and more than half won’t take someone relying on intravenous nutrition. Many won’t enroll patients receiving palliative radiation or blood transfusions; a few say no to tube feeding. This made more sense a couple of decades ago, when Medicare developed the regulations requiring patients to forgo curative treatments when they entered hospice. Hospice patients must have a terminal disease, likely to cause death within six months, so such treatments were presumed futile. But medicine evolves. Now, Dr. Aldridge Carlson pointed out, the distinction between curative and palliative treatments has grown blurry. “It’s increasingly an artificial dichotomy,” she said. “That’s not the reality for most patients today with end-stage disease.” Chemotherapy, for instance, is often used to shrink tumors that cause pain; radiation can prevent nausea and vomiting for patients with bowel obstructions. Though neither will cure a terminal cancer, as palliative treatments they can improve quality of life. Blood transfusions can help anemic cancer patients feel better, too, at least for a while. Why, then, would hospices not accept dying people using these treatments? First, these are expensive to provide. The national average Medicare reimbursement for hospice care is just $140 a day, the study notes, and it’s not adjusted to reflect the cost of more complicated regimens. Besides, hospices worry about running afoul of Medicare regulations and being denied even that inadequate reimbursement. This probably explains why the researchers found that smaller hospices were more likely than large ones to say no to patients receiving such treatments. “If you’re a small hospice caring for someone with many medical issues and the reimbursement doesn’t even cover the care – and then Medicare comes to take it back – that’s a big hit,” Dr. Aldridge Carlson said. Larger organizations with more patients and bigger budgets can better absorb the costs. One bright note, though, is that almost 30 percent of the hospices studied offer some kind of open access enrollment without insisting on those prohibitions. Much more common in nonprofit hospices (a pity, because the real growth is in for-profit ones), open access usually means enrolling people who don’t yet meet the Medicare criteria, then converting them to Medicare patients as they become eligible. At Gilchrist Hospice Care in Baltimore, for instance, patients still using chemotherapy, radiation, transfusions and several other treatments can enter what it calls “expanded care,” sometimes also known as “concurrent care.” (At Gilchrist, however, such patients still must meet the six-month hospice eligibility requirement.) “If you say, ‘You can’t get blood transfusions any more,’ people say, ‘Why would I go with your program?’” said Regina Bodnar, Gilchrist’s clinical director. The hospice’s concurrent program “is not so either/or.” People who enter hospice care with palliative treatments usually decide to forgo them anyway when they become less effective or more burdensome, Ms. Bodnar said, but “this allows people to make the transition over time.” As the largest hospice program in Maryland, a nonprofit with generous donors, Gilchrist can afford this more flexible, but expensive, approach.Could it be the future of hospice? That would require Medicare to make some changes in eligibility and reimbursement practices — a shift that might bolster Medicare’s solvency, too. “Hospice saves money because it keeps people out of the hospital,” Dr. Aldridge Carlson said. Even more expensive outpatient treatments, like palliative radiation, are less costly than days spent in intensive care. Adjusting policies to allow more patients into hospice might bring costs down.But as important, it could make the call to hospice a slightly less terrifying prospect and provide more families with the help they need at the end of life. “We need to take down the barriers to hospice care,” Ms. Bodnar said, “and this is one way to do it.

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