Haven Hospice in Gainesville, Florida
At some point, you will approach the end of your life, and you will need to be ready. It can be daunting, isolating, and confusing, but it doesn’t have to be. You can make end-of-life decisions without being afraid. 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.
The Taboo Surrounding Hospice
But even if I know what it’s like at Haven, 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 offer our loved one hospice care.
These experiences are all too real and distressing for 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 a positive light.
But what I do know is that planning ahead, understanding the financial considerations of hospice care, and knowing what to look for in a care center can go a long way in reducing the stress of an already intense situation.
What Is Hospice?
Before I launch into facts and figures, I’d like to clarify something: The words 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. The end of a patient’s life doesn’t necessarily need to be in an unfamiliar place.
Though many hospices operate care centers that provide 24-hour care to patients, the majority of hospice patients are taken care of in the home.
About 98 percent of days spent in hospice occur in a patient’s own home, according to a recent study by the National Hospice and Palliative Care Organization.
There are close to 4,300 hospices nationwide, according to the Centers for Disease Control and Prevention, and all hospices provide a similar kind of care. However, they differ in the unfunded programs they offer and the level of reimbursement they receive.
How Hospices Work
Hospices typically fall into one of two categories — for-profit or nonprofit.
“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. It is best to approach only hospice organizations that have received this approval.
Medically accredited organizations have stricter regulations and higher standards for care.
Hospice agencies in the United States can be accredited through one of three agencies, according to the National Association for Home Care and Hospice:
- The Accreditation Commission for Health Care
- The Community Health Accreditation Program
- The Joint Commission on Accreditation of Healthcare Organizations
What About the Money?
Health care is expensive — especially in the United States, where individuals spend an average of $11,172 per person per year on healthcare-related expenses, according to the Centers for Medicare and Medicaid Services (CMS). And that cost is anticipated to increase by an estimated 5.4 percent each year through 2028.
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 Medicare spends an average of $12,200 per patient that enters hospice care, according to the National Hospice and Palliative Care Organization.
Though Haven’s at-home hospice rate is $235 per day, the at-home cost of other end-of-life facilities can range wildly. It is important to speak with each facility to determine what costs will be incurred.
If you do not qualify for Medicare coverage and cannot afford to pay for hospice care, many facilities will offer charitable care without the expectation of payment, according to the Hospice Foundation of America. Be sure to contact different facilities to see if you qualify.
You can find more information on specific policies surrounding Medicare and Medicaid reimbursements on their websites and the CMS website.
Naturally, inpatient care at a hospice center is more costly. While generally high, prices between facilities can vary wildly. Haven’s daily inpatient rate is $725 per day. Other centers, like charge $500 per day. Even this can be expensive, given that can mean $15,500 spent in a single month.
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 tend to rely on the generosity of the community to cover any extra costs.
What Do I Look For?
If hospice is on your radar to any degree, it’s worthwhile to start doing your research now.
“Families begin looking at hospices at a terrible time,” says Marylin Bloom, Haven’s director of advanced illness.
Stress, unexpected health challenges, and financial strain all contribute to this unfortunate timing, and can cause you to rush your search, which can lead to you deciding on a facility that may not fit your loved one’s needs.
Regardless of where you are in relation to a hospice decision, there are certain factors you should keep an eye out for:
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 one and can do a great deal to ease your peace of mind.
To ensure that a facility has good quality care, double- or triple-check that the hospice has received accreditation from one of the three main verifying agencies mentioned above. It may also be helpful to visit the facility and speak to staff members prior to selecting it for your loved one.
2. Flexibility of Care
You and your family should always be the ones to direct the services and care of the staff. You’ll want to find a hospice that is flexible to your needs and can adapt to any health changes.
It can be a huge load off your back to know that you have a hospice that can help your loved one in the event of any serious life changes.
Nothing is worse than having to deal with hospice personnel who are not flexible and adaptable.
Make sure hospice staff are willing to listen to your concerns, so that your loved one can receive the best care possible.
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. You can also search for reviews of each facility on websites like Caring. This can be a helpful way to see what others had to say about their loved one’s treatment.
When Is Hospice Care a Good Idea?
Maybe you don’t need (or want) to think about hospice care at the moment, 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. Start doing your research now, so that you can be prepared if the worst happens.
The Bottom Line
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.