There’s no doubt about it: Hospice is a topic that’s far easier to ignore than to face.
But since you’re already here, I thought maybe we could face it together. For two minutes. This should give me just enough time to cover the things you most need to know about hospice, beginning with how underutilized it is.
Why don’t more people have hospice care? Well, for one thing, it’s not talked about enough. Also, people tend to view hospice negatively when in fact research shows that people who receive hospice live longer than those who don’t. This makes hospice services extremely valuable. Beyond that, here’s what I think is most important to know…
Hospice care can be provided at home or in a hospice facility.
Did you think there was only one way to receive hospice care? Many people do. Instead, think of hospice care as a service that can come to your aging parent (this would be home hospice), or your aging parent can go to it (this would be a hospice facility).
Is your aging parent living in an assisted living facility or nursing home? It doesn’t matter; he/she can still receive hospice care. In these cases the facility would be considered the “home”, and hospice services would supplement (not replace) the care that’s already provided.
Hospice care is a FULLY covered benefit under Medicare, Medicaid and most private insurance companies.
And, according to the National Hospice and Palliative Care Organization [NHPCO], it should be covered even if you have no insurance at all.
What do I mean by FULLY covered? I mean that so long as your aging parent is enrolled in hospice, neither you nor (s)he will see a bill for any medication, medical care, counseling, equipment, or supplies. This includes everything – hospital bed, shower chair, nursing visits, home health aide assistance, etc. Without hospice, Medicare will not pay for many of these services.
Many hospice facilities do not accept patients until the very end.
Many people believe that hospice care that is provided at a hospice facility is available to anyone so long as (s)he qualifies for hospice. This is a common misunderstanding.
Here’s the issue: Care that is provided in a facility is almost always more expensive than care that is provided at home. Also, reimbursement rates for hospice care are low. This means that to stay afloat financially, hospice facilities need to limit the number of days the average person is likely to stay.
This is the primary reason why most hospice care is delivered at home and only those patients who are actively dying (i.e. a few days to a week away from death) tend to be admitted to a hospice facility.
Home hospice care requires family or paid caregiver involvement.
This is a big one! While hospice care does include home health aide assistance, it is by no means 24 hour coverage. Here too, the reimbursement rate is to blame. This means that if your aging parent is enrolled in home hospice, family and/or paid caregivers will need to supplement the care that is covered.
How much home health aide assistance can you expect while your aging parent is on hospice? The answer is four hours per day of help, three to five days a week. For those families who have been going-it-alone, this will feel like a lot. But it’s not usually sufficient to meet the needs of the ill person as the illness progresses. If additional assistance is required, it would need to be paid for out-of-pocket.
One way to manage this without hiring privately is for the ill person to receive home hospice services until the need for care exceeds what the family and the home health aide can provide. At that point, a consultation with a physician is in order. If the illness has advanced considerably, it may be possible to transition him/her to a hospice facility.
Many people qualify for hospice care although they may not realize it.
What I mean is that ANYONE – regardless of age, religion, or race – with a life-limiting illness qualifies for hospice care. Often it’s the “life-limiting” part that is confusing to folks so let me try to clarify this a bit more…
If a physician believes that your aging parent’s illness is likely to take his/her life within six months if it were to run it’s natural course, then (s)he qualifies for hospice. Another common misunderstanding is that only certain medical diagnoses qualify a person for hospice. Instead, it can be any illness including Congestive Heart Failure (CHF), cancer, and even dementia.
And what happens if your mom or dad lives longer than six months? Then hospice care is reauthorized for another six months and his/her condition is re-evaluated thereafter. In the meantime, you and your loved one will have tapped into a wealth of support.
***If you’re reading all the way down here I want to thank you for sticking with me. End of life conversations are never easy, but you’ve dipped your toes in the water. Good for you.***
Talking about hospice is part of planning care. For more articles that discuss planning care for your aging parent, head on over to the Planning Care page.