Difference between Home Health, Palliative Care and Hospice??

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Ok guys/girls. I do understand that no medical advice can be given here but I am looking for a clearer explanation of each of these areas as I have only a few weeks to help my dad decide what to do.

The hospital Social Workers are not very helpful. The doctor came in the room, asked my dad what his wishes were if he again had trouble breathing. My dad told him that he didn't want the trach ever again. The doctor replied, "Well ok then. We'll discharge you home on hospice and give you Roxanol until you die." And with fear and trepidation in his eyes, my dad stated "Well, I think I have a few good weeks left in me.". Uggggg.

Dad was in a rollover tractor accident in March. He has spent most of these past months in ICU with multiple bone fractures, and burns and all the complications involved. At this point, he is down to 137 pounds, with a GT, still with the hole from his trach healing, a GT to drainage, a JT for feeding, Stage IV decube to his coccyx and remains NPO. He does love his therapist at the Skilled Care Facility but the nurses are way overworked and cannot be in his room to suction him as needed (he is back in the hospital after one of the nurses/aides gave him a glass of water, he began coughing so hard that he vomited and aspirated GT feeding and reopened the stoma from his trach.)

Anyhooooo, he wants to go home. It has been months. I want to help him do just that and will be quitting my job here in another state and moving to his state to help with his recovery. We are having ramps and rails put in and will ensure that all the equipment he needs will be available but I am not sure at this point which of the above would help him the most.

He is now able to speak above a whisper and can have ice chips. He does get up to the w/c to wash his face, brush his teeth and shave. He needs assist to transfer to the w/c or commode. He does NOT want to die and has good cognition.

The hospital obviously as noted above is pushing for him to go home with Hospice but I feel that once he gets back home with his wife, his dog, his chair, the lake and birds, he will finally begin to heal. Especially if he has someone right there to assist him and ahem, push him to go further. Plus, the only thing he doesn't want is to be intubated, but he does want to be given CPR if needed.

That being said, I am a realist. He was very critically ill and is severly emaciated and weak (he used to work out 4-6 hours every day, after all these months, he still cannot stand by himself). He did get gastroparesis from the rapid IV infusion after the burns and his stomach is slow in responding. He has virtually only gained 0.6 ounces...due to???? Letting his GT run empty too many times? Shutting it off and forgetting it? Yes these things have happened, and is yet more reason to get him home. More reason to believe he can actually heal there, and yet? Still we don't know. But I'd like to give him that chance. If nothing else, to go home for Christmas and be surrounded by help and love.

Sigh, I've run on. I do apologize. So, he has Medicaid with a supplemental insurance. I would appreciate anyone with general knowledge with the above 3 options to help out a fellow tired nurse :))) Any guidance to where I can begin would be most helpful!

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Hands down, if he were my dad and I could be there full time for a good chunk of a time, I would bring him home and rehabilitate him. The decub itself is much related to not having one on one care. If he could get that with proper wound care, a good quality memory foam mattress, one on one 24 hr care and adequate hydration/nutrition, he would at least improve marginally if not significantly. And I'd encourage him to sign a POLST for DNR with limited intervention and tube feedings (ie no CPR or intubation but good medical care). I know I could provide more comprehensive care either as an experienced home health nurse or as a lay person trained by the home health team. He'd either improve well enough for some quality of life or improve to be more comfortable for his remaining days. I'd at least give it a shot.

Home health is focused on improvement whether that is medical improvement, functional improvement, disease mgmt knowledge and/or caregiver training and then discharge. Unless they have an indwelling urinary catheter and then scheduled visits for changes but managed by caregiver.

Hospice is holistic terminal care for a patient with less than 6 mos life expectancy covered by insurance. (Best covered by Medicare) Most patient expenses are incurred by the insurance so they are very prudent about treatments that they will be responsible for.

Palliative care is more generic and can be received by home health care but it's really not appropriate. We are so limited in comfort measures as well as physicians are less liberal with symptom mgmt, at least in the home setting. I can't speak to GIP.

Many hugs, I wish you and your family the best. I got to take care of my dad for a bit before we lost him and I will never regret that time.

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Hands down, if he were my dad and I could be there full time for a good chunk of a time, I would bring him home and rehabilitate him. The decub itself is much related to not having one on one care. If he could get that with proper wound care, a good quality memory foam mattress, one on one 24 hr care and adequate hydration/nutrition, he would at least improve marginally if not significantly. And I'd encourage him to sign a POLST for DNR with limited intervention and tube feedings (ie no CPR or intubation but good medical care). I know I could provide more comprehensive care either as an experienced home health nurse or as a lay person trained by the home health team. He'd either improve well enough for some quality of life or improve to be more comfortable for his remaining days. I'd at least give it a shot.

Home health is focused on improvement whether that is medical improvement, functional improvement, disease mgmt knowledge and/or caregiver training and then discharge. Unless they have an indwelling urinary catheter and then scheduled visits for changes but managed by caregiver.

Hospice is holistic terminal care for a patient with less than 6 mos life expectancy covered by insurance. (Best covered by Medicare) Most patient expenses are incurred by the insurance so they are very prudent about treatments that they will be responsible for.

Palliative care is more generic and can be received by home health care but it's really not appropriate. We are so limited in comfort measures as well as physicians are less liberal with symptom mgmt, at least in the home setting. I can't speak to GIP.

Many hugs, I wish you and your family the best. I got to take care of my dad for a bit before we lost him and I will never regret that time.

Thanks for your response Libby. I will be moving there in a few weeks and agree with you 100% that he should see a marked improvement in nearly all areas just by getting one:one care. That being said, he has a GT, JT, stoma from trach hasn't yet healed, only gets ice chips per ST at present, F/C, Stage IV to coccyx, recieves Neb txs, O2 prn and suctioning prn as he occassionally aspirates if JT clogges. These things are all manageable by me. I would like therapy to continue in the home at least to help us to help him manage in the home environment. The issues with blood draws for coumadin, continual problems with low HGB and elevated K levels will need to be managed.

Sooo, after all this is seems as though we won't want Hospice as the hope for a better recovery remains. But was unsure what exactly Palliative Care would help us do or better to just try to go with Home Health referral? I am thinking Home Health but from what the hospital explained, equipment-wise, they won't help much.

There is so much to think about but it helps so much for me to just write it here. Thank you to any and all that reply...helps to calm me down and focus to think that there are others that have done this. That it can be done, even when it sounds overwhelming. Yes, I am a nurse, for a long time...but this is my dad. Will be treated at home without all the resources I am used to being able to just order up from maintanence and I really never gave much thought to patient payer sources but now I must. After being in ICU so many months, I am not sure where their finances stand.

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Know this is not much help, but reading your description of the circumstances, wish I could become part of a home health team to work in rehabilitating your dad at home. It sounds very possible that his quality of life could be improved upon, and it would be a welcome challenge to work in such an effort. Hope your family can get the help that your dad needs.

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I can explain the difference per my experience with my son. He had a cardiac arrest at 2 years old (HLHS) and ended up paralyzed and trach/vent dependent with a PICC and a GJ.

We left the hospital that time with home health because I couldn't provide 24/7 care to my son although some days, I had to. So his wonderful! nurses would come in from 9pm-6am most nights. They did all of his cares and did his meds.

He was also on palliative care at the same time as having home health. The way it was explained to me, was that we were no longer actively fighting to beat his disease (heart defect, profound brain injury, etc). I knew in my heart that he was past fighting. He was not going to heal/recover from these things. So I made specific choices in his care. A doc told me he had low calcium vit/d and were talking about doing infusions. I said no, because I knew it really wasn't going to benefit him.

After a year on palliative care, I talked with his palliative care team about transitioning to hospice. There were several things that led up to this. He had yet another infection and was septic again right before Christmas. I decided that he had gotten IV antibiotics for the last time. I wanted him to have a great quality of life. I learned that quantity didn't matter when quality was crap. Two weeks after going on hospice, my beautiful son passed away in a manner of my choosing. I knew after seeing him code for 30 minutes, he was NOT going to die that was every again. So at home, while I slept next to him, my 3 year old son died. And I am very thankful it was at home, in his own bed with family. He was more comfortable on hospice than he was on palliative care because that was our whole focus. He was not in pain and he didn't struggle.

Good luck with your decision. My only regret is not putting him on palliative care sooner. He suffered more because I didn't want my child to leave me.

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I can explain the difference per my experience with my son. He had a cardiac arrest at 2 years old (HLHS) and ended up paralyzed and trach/vent dependent with a PICC and a GJ.

We left the hospital that time with home health because I couldn't provide 24/7 care to my son although some days, I had to. So his wonderful! nurses would come in from 9pm-6am most nights. They did all of his cares and did his meds.

He was also on palliative care at the same time as having home health. The way it was explained to me, was that we were no longer actively fighting to beat his disease (heart defect, profound brain injury, etc). I knew in my heart that he was past fighting. He was not going to heal/recover from these things. So I made specific choices in his care. A doc told me he had low calcium vit/d and were talking about doing infusions. I said no, because I knew it really wasn't going to benefit him.

After a year on palliative care, I talked with his palliative care team about transitioning to hospice. There were several things that led up to this. He had yet another infection and was septic again right before Christmas. I decided that he had gotten IV antibiotics for the last time. I wanted him to have a great quality of life. I learned that quantity didn't matter when quality was crap. Two weeks after going on hospice, my beautiful son passed away in a manner of my choosing. I knew after seeing him code for 30 minutes, he was NOT going to die that was every again. So at home, while I slept next to him, my 3 year old son died. And I am very thankful it was at home, in his own bed with family. He was more comfortable on hospice than he was on palliative care because that was our whole focus. He was not in pain and he didn't struggle.

Good luck with your decision. My only regret is not putting him on palliative care sooner. He suffered more because I didn't want my child to leave me.

sending love

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