Nuts and Bolts of Hospice Care

“Fear is the lengthened shadow of ignorance.”  -Arnold Glasow

Isn’t it true that we often fear the unknown and things not experienced? Hospice definitely fits that mould. Unsure of what hospice entails, it may seem easier to stick with what is familiar.

The philosophy of hospice, hopefully, is now familiar: to focus on living and quality of life by relieving and preventing suffering. But what of the practical day to day issues? Let’s spend some time unveiling these mysteries.

First we should discuss cost. In 1986 the Medicare Hospice Benefit was permanently established by congress. This fund, separate from traditional Medicare coverage and separate from social security is available to all Medicare patients and covers 100% of hospice services. Specifically this means that there is no charge to the patient for hospice related medications, no charge for medical equipment such as hospital beds, wheelchairs, and supplemental oxygen. There is no charge for nurses, doctors, social workers or anyone else visiting associated with hospice. And by no charge I mean no co-pay, no deductable; essentially this is free medical care.  

Understandably not everyone has Medicare. The good news is that commercial plans and Medicaid usually mimic Medicare in their coverage.

Occasionally someone might not have any insurance, but even that doesn’t preclude care. I still remember taking care of Annie, a 30 something mom with lung cancer, no insurance, and behind on rent payments. She and her 10 year old son were down to just crackers for food at home. The not-for-profit hospice I worked at took both of them in, providing care in our hospice house until she died.

That’s one reason for community fund raisers, it allows us to offer care to the most needy.

Now that we know hospice charges no cost to the patient, let’s discuss other practical points.

Hospice encourages patients to continue to schedule visits with their personal doctor. However, if this is impossible the hospice nurse can help facilitate conversation with the patient’s physician for medication changes and advice.

Unlike home health services which require the person to be home bound, Hospice encourages the patient to get out and about and to continue with activities and travel as physically tolerated.

Often patients fear that if they start hospice they will have to stop taking all of their medication. While sometimes medications are simplified, to decrease something called pill burden, any medication that contributes to quality of life is absolutely continued.

Other patients are afraid hospice will force them to take medications leaving them sleepy or confused. Hospice doesn’t force medication. In fact, my philosophy is that less is better. I only use medications appropriate for a specific symptom I’m treating. If there are no symptoms, there is no need for medication.

It is understandable that things unknown are frightening. Hopefully these facts may ease some of those fears. Hospice isn’t for everyone, but for someone at the end stage of their disease wanting to focus on living well, with free medical care, it may be time to leave the shadows of uncertainty and start the discovery.