End stage CHF & Home HD

I’m hoping that someone might offer their opinion in my case. My Father (Billy) has end-stage heart failure. He was started on hemodialysis 18 months ago for CHF & severe fluid retention from the heart failure. He attends HD 3 x’s a week sometimes 4 x’s a week depending on how much fluid he has on board. He was admitted to Hospice at the beginning of this month. A couple of days ago he became immobile…unable to bear weight at all. He is so generally weak but has a STRONG will to live. He hasn’t thrown his hands up yet and voiced “I can’t do this anymore, I’m so tired.” This man literally drags himself with his weak upper body trying to help us (his Children who are his Care Givers) get him dressed & into his wheelchair & to the dialysis center. Moving him is tremendously difficult because he is dead weight. Today I came up with the idea of home HD. I’m an RN & have NEVER heard of anyone who had received home HD. I have a call into his Nephrologist to see if he would be a candidate for home HD. He called me back & told me that he would call me tonight when he got home because “this conversation is going to be an extensive one.” I then placed a call to Billy’s Cardiologist to see what his ejection fraction is & if he would even benefit from home HD. I’m waiting for a return call. I understand that we will lose Hospice because home HD is curative & not palliative…and that’s alright. I was just wondering if there was anybody out there that has experienced a similar situation & what their outcome was…please help me :slight_smile: Thank you…nicelmia

Hi Nicelmia. I’m sorry to hear that your dad is so ill–and that you’d never heard of home HD before. We find that there tend to be two distinct groups of people who do home HD. Group 1 is younger, pretty healthy apart from kidney failure, and wants to be independent. Some of these folks dialyze by themselves without a partner (they do 100% of the work), or with a partner who does some amount (the more someone can do for him or herself, the better). Group 2 tends to be very ill and frail. They may have mobility challenges or vents/trachs that make it hard to get them to and from a center three times a week. Group 2 folks CAN do home HD–but someone other than the patient needs to do probably 100% of the treatment. Medicare pays for dialysis, but not for a helper. So, someone in your family would need to be trained to help him. Home HD helpers do not have to have medical backgrounds–they just have to be able and willing to learn. Learning to do home HD is a lot like learning to drive a car.
Your dad clearly falls into Group 2.

I’m not a clinician. But, I can tell you that more dialysis is far better for your dad’s heart. He is accumulating fluid every day, but it’s only being removed 3 or 4 times a week now, in a harsh way that is very hard on his already weak heart. Nocturnal HD (which doesn’t have to be done at night) would remove fluid over an 8-hour period instead of a 4-hour one. This is very gentle, and given your dad’s CHF, a letter of medical justification from your dad’s doctor would certainly be appropriate so he could get treatments 4, 5, or even 6 times a week. (Medicare will pay for up to 4, but centers can usually make this work. Or, perhaps your dad has a health plan other than Medicare, which could also help).

I don’t know that he would necessarily lose hospice–this is a good question for the Social Worker. But I strongly suspect that he could feel better and be more active with more treatment.

If he’s getting hospice for his CHF (the diagnosis that is considered terminal) and Medicare is paying separately for his in-center dialysis, if he did home dialysis, he would still have the CHF and Medicare would still pay separately. More frequent home HD could be considered palliative (not curative) care and it could improve his quality of life if it allows more stable fluid balance.

Incidentally, home dialysis helpers can either be family members or friends who receiving training from a dialysis clinic that is certified to provide home dialysis training and support or an individual who may work in dialysis so has been trained and can prove competency to the dialysis facility that is providing the patient’s equipment and supplies. In the latter case, generally these individuals are paid by the family or occasionally a patient has a health insurance or long-term care policy that covers this service.