Hospice Care/Home healthcare support for vent patient
QUESTION: Hello Christine -
My father was diagnosed with COPD a couple of years ago and is now in the final stages and completely dependent on the ventilator. At one point we hoped that he could be weened off and return to regular oxygen therapy; however, his condition deteriorated to the point where that is no longer an option. My father has a strong desire to spend his last days at home; however, we have ran into a number of road blocks with the local home health/hospice organizations unwilling to support someone in his condition. Also, the medical staff at the nursing facility where he is staying refuses to release him to home care due to his condition. I would love to be able to bring him home. Are there home health/hospice services available that could support patients at home that require the use of a ventilator? We live in the Decatur, Illinois area. Any help or insight you could provide would be appreciated. Thanks Christine.
ANSWER: Dear Tim--
Can you tell me if your father has any other diagnoses, other than the COPD?
Cancer, heart disease, anything.
Here's the reason: home health can manage a ventilator, and the costs for it can go on regular insurance (or Medicare Part A), while hospice has to cover everything related to the terminal illness, including the ventilator, and all the money has to come out of a single daily rate of around $150 a day: that's the ventilator, the medications related to the diagnosis, nursing visits, hospital bed, water proof bed pads and supplies like that, wheelchair, everything.
If we can make this work, it is likely going to be with you and other family members doing most of the ventilator care, which means you'd have to learn to suction, how to read the gauges, the whole thing.
It can be done, but neither home health nor hospice will be able to provide staff 24/7.
I'll watch my email for the remainder of the day (I am also in Central Standard Time), and would be happy to take whatever information you give me and make some phone calls. It is way out of the intention of this site, and you must understand the best I can offer may not be the best that a nurse in the area could do, but I'll do what I can.
One thing, the nursing home doesn't get to dictate where your father stays. If your father can voice his intentions, or if his MPOA can express his wishes, there is no reason not to find some way to get him home. It won't be easy, you'll have to put a lot of work into caring for him, and the odds of finding both a home health and a hospice that can pull this off are slim, but I will help as much as I can.
It could be that the nursing home is concerned about liability, so your (or the MPOA's) willingness to sign a waiver may be key. They aren't going to be very happy to help you get him home, only have to have him die and be sued because they should have kept you from it. You seem like a very reasonable person, but not everyone is so reasonable, and I know you understand the nursing home's (and possibly his physician's) position with regard to being sued.
Take care, I hope you see this soon, and if you'd like to make this communication private, I think that would be a good idea. I am happy to help, but I wouldn't be able to do this very often. I know you understand.
Please write back.
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QUESTION: Hi Christine -
Thank you for your response. I would like to make this communication private. If you are able please feel free to contact me directly at (office) tomorrow. My personal email is which is the email address you are responding to.
I do understand the nursing facility's hesitation to release my father for liability reasons. Even if they do, I know it would take considerable effort on my mother's part in caring for him, which is also a concern. It seems as if hope is fading that my dad will be able to leave the nursing facility; however, I want to explore all options first.
To answer your previous question, my father doesn't have any other diagnoses - only COPD. I would appreciate your insight and whatever assistance/direction you can provide. Please write back or call me at your earliest convenience.
OK, I don't know if this will help but after making several phone calls (I see what you mean about not getting anywhere!), I reached someone who is willing to at least see what they can do.
The hospice is St. John's Hospice and they are part of the St. Mary's Hospital. The contact person is Nancy Fitch. Her phone number (I hope this gets to you!) is two one four five four four six four six four ext four six two one four.
There are no guarantees! They may not be able to help. But I know that insurance can cover at least part of a daily rental on a ventilator. Your father may not be eligible for the ventilator reimbursement AND hospice care, but might be able to receive "palliative care" (management of symptoms) and the ventilator.
Be ready to provide as much information as you can: diagnosis, where he is, what insurance he has, etc. etc. Although I explained our relationship is not one that permits knowledge of personal information or identification, this seemed frustrating (and I can understand that, as a nurse).
Good luck--let me know how it turns out, if you can. I am running the risk of losing my position at allexperts dot com, but I don't have any other way to help you. You and your family are in my thoughts and prayers. God Bless.