How hospice works: Part 2

Check out Part 1 of this series on how hospice works.

Hospice can do wonders for your loved one. It’s helpful to get some answers from the hospice organization early on about various rules and regulations. These were some of the specific questions we had when my grandfather was on hospice: If he got really sick and we couldn’t manage at home, who would help us? Could he still go the emergency room? Would he have to dis-enroll from hospice? Could any hospice staff speak Chinese, his native language?  

Q: Can I still go to the hospital if I’m receiving hospice services?

A: Yes–how this works depends on the reason you’re going to the hospital. In my grandfather’s case we were worried about him getting a bad infection because of all his chemo.  The hospice explained that if we wanted to take him to the ER, we should contact them first to see if they could help. If he did go to the ER and stayed in the hospital for a few days, he would likely have to temporarily revoke hospice services in order to have the hospital visit paid for by Medicare, as Medicare will not pay for both.

However, hospice takes care of you for a specific illness (like cancer), so if you have an unrelated problem (like a broken leg) you can still get separate treatment and insurance coverage for that. You can also decide to stop hospice services at any time. If you want to re-enroll later, the hospice will re-evaluate you based on the same criteria.

Q: What comes in a hospice kit?

A: Many hospices provide a set of medications to help with pain, nausea, confusion, and anxiety. They will teach your family members or caregivers how to use these.

Q: What happens when you call the hospice hotline?

A: A hospice staff member is available 24/7. When my grandfather had worsening pain, the hospice nurse told us how much medication to use and how often to give it. We called a second time when things weren’t getting better. The next morning a nurse came on an unscheduled visit to make sure he was feeling better and that we had a good plan.

Q: What does the hospice doctor do?

A: Every hospice has a medical director who certifies that a patient can receive hospice services. This doctor works closely with the whole team and your own doctor (who stays involved in your care), and is on call when needed.

Q: What happens if I live longer than 6 months?

A: Doctors are notoriously inaccurate when it comes to predicting life expectancy. A nurse or doctor from the hospice will visit you around the 6-month point to see how you’re doing and if you still need hospice services. It’s usually no problem to extend services if you still need them. If you’re stable or even improving in certain areas, like appetite or mobility, they might talk to you about no longer needing hospice for the time being.

Q: How do I learn more about a specific hospice organization?

A: Hospices can be very different from one another – they can be nonprofit or for-profit, serve one or many communities, be independent or connected with another hospital or health system. The best way to learn about a program is to call the hospice – find out what services they provide, if anyone speaks a different language, or if they have a freestanding inpatient hospice. Your doctor should know what hospices serve the area, and you can also search online:

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