Haven Hospice in Gainesville, Florida
I have something to tell you. At some point, you will approach the end of your life. This truth can be daunting, isolating, and confusing, but making end-of-life decisions doesn’t have to be. That’s where hospice comes in.
For anyone walking through the later stages of a terminal illness or experiencing that process with a loved one, the word hospice likely triggers some unpleasant feelings.
Maybe that’s why I get so many bewildered looks when people find out that I, a carefree college student, intern at a local hospice. After all, it’s unusual for someone so young to work so closely with death.
But what I see at Haven, a not-for-profit hospice operating in north-central Florida, is far from death. Walking through the center’s halls on my way to development meetings, I see lives being lived to the fullest.
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The Taboo Surrounding Hospice
Even so, I get it. I’ve been in those families’ shoes. The exhausted tears, the late nights, the tight caregiver schedules and budgets, the inevitable conversation about when we’re going to throw in the towel and do the hospice thing. These experiences are all too real and too distressing to thousands of families, and I’ve had my fair share of similar experiences in my professional life. But it doesn’t need to be this way.
Why do we tend to view hospice as an added burden, rather than an option that eases our strain and alleviates discomfort?
I admit I don’t know the answer to this question. Perhaps the taboo of discussing death candidly prevents us from viewing end-of-life care in its correct context. But what I do know is that planning ahead, understanding the financial considerations of hospice care, and understanding what to look for in a care center go a long way in reducing the stress of an already intense situation.
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What Is Hospice?
Before I launch into facts and figures, I’d like to clarify something. Hospice and death are not synonymous. Hospice care is intended for individuals who are in their last six months of life. That said, its philosophy is not just to provide a comfortable death. Hospice’s true mission is to help those close to death live the rest of their lives to the fullest.
It’s also important to note that hospice is not a place. While many hospices operate care centers that provide 24-hour care to patients, the majority of hospice patients are taken care of in the home.
There are close to 4,300 hospices nationwide, according to the Centers for Disease Control and Prevention. All hospices provide a similar kind of medical care. However, they differ in the unfunded programs they offer and the level of reimbursement they receive.
How Hospices Work
“A growing number of hospices are choosing to be for-profit entities instead of not-for-profit entities,” says Kim Sovia, the director of development for Haven. “For-profit corporations have to put more of an emphasis on profitability for shareholders, while not-for-profits can reinvest all profits back into care they provide and into their communities.”
Most hospices nationwide are privately operated and can apply for medical accreditation.
Medically accredited organizations have stricter regulations and have higher standards for care.
Hospice agencies in the United States can be accredited through one of three agencies: the Accreditation Commission for Health Care, the Community Health Accreditation Program, and the Joint Commission on Accreditation of Healthcare Organizations. You can find more information about the agencies and what they require from the hospices they certify on the National Association for Home Care and Hospice's website.
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What About the Money?
Health care is expensive — especially in the United States, where we collectively spent $3.5 trillion health care-related expenses in 2017, according to the Senate Committee on Health, Education, Labor, and Pensions. One of the reasons that hospice is a financial strain is that palliative care decisions typically take place at the end of a long, resource-depleting fight with an illness. Whether you’re at that point, close to it, or even years away from the hospice question, here are a few useful facts to know about the financial considerations during this particular life chapter.
All hospices, regardless of whether or not they’re for-profit, typically accept commercial insurance, Medicare, Medicaid, and self-payment.
When it comes to private insurance, reimbursement rates vary. For those who qualify for Medicare or Medicaid, though, the government provides a preset reimbursement for hospice needs. This rate varies by county and current U.S. policy, but averages at about $153 per day.
You can find more information on specific policies surrounding Medicare and Medicaid reimbursements on their individual websites and on the Centers for Medicare and Medicaid Services website.
This amount helps, but hospice costs are typically much greater than what the government reimbursement provides.
According to Debbie Green, a controller in Haven’s finance department, Haven’s at-home hospice rate is $235 a day; nationally this rate can reach over $595 for continuous home care.
Naturally, inpatient care at a hospice center is more costly. Haven’s daily inpatient rate is $725 a day. However, other U.S. facilities have been known to charge upwards of $800.
Green also notes that for-profit hospices might require you to cover the costs that your health insurance doesn’t, while not-for-profit hospices will work with you on the balance and rely on the generosity of the community to cover any extra costs.
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What Do I Look For?
If hospice is on your radar to any degree, it’s worthwhile to start researching now.
Marylin Bloom, Haven’s director of advanced illness, says that “families begin looking at hospices at a very terrible time.”
Stress, unexpected health challenges, and financial strain all contribute to this unfortunate timing, but regardless of where you are in relation to a hospice decision, there are certain factors for which you should keep an eye out:
Whether you determine this by a hospice’s agency accreditation or what you’ve seen of their staff and facilities, ensuring high-caliber care is essential to the comfort of your loved ones and your peace of mind. Double- or triple-check that the hospice has received accreditation from one of the three main verifying agencies mentioned above.
You and your family should always be the ones to direct services and care by staff. You’ll want to find a hospice that is flexible to your needs and can adapt to any health changes.
You can glean this from friends and relatives who have benefited from a local hospice or from the recommendation of a physician. Regardless of the testimonial’s source, you’ll want to find a hospice that is trusted and well-known in your community.
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When Is Hospice Care a Good Idea?
Maybe you don’t need to think about hospice care currently, especially if both you and your family are (relatively) young and healthy. In that case, this information is just food for thought — something to stow away for years down the road.
But maybe your mom is sick, and doctors are saying she has six months left. At the risk of sounding like an alarmist, many people receive life-changing medical news unexpectedly. If and when that happens, the last thing you want to worry about is finances.
Admitting that it’s time for hospice is not a defeat. It doesn't mean you or your loved one has given up on trying to get better. It’s merely another step in the process of life, and it’s a step in the right direction. With enough information and a little bit of research, you can make the choice with confidence — and receive care that brings comfort, not fear.
Additional reporting by Connor Beckett McInerney.