Home hospice not what I expected. Has anyone else been in this situation?

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After a year of hell where my dad was in and out of the hospital 7 times and his begging us just to take him home We decided to put him on home hospice. We thought him being in his own home was the best thing for him and my parents have limited assets.
I am in the health field and was under the impression that hospice was some magical experience where support was overflowing. My experience with my dads home hospice agency has been substandard. Our team leader comes once a week and it seems that her objective is to #1 get us to sign papers showing she was there so they can bill Medicare ,#2 to dodge questions , and #3 remind us what we already know that my dad is dying. We all understand that dad is at the end of his life, but feel efforts should have been made to get him out of bed when he first got home so that that the stage 4 bedsores he had could stand a chance. They told my elderly mom to call anytime but when she does is given the run around. Pain medications have been delivered a day late. The list of issues go on and on.
My dads wounds really need to be changed everyday and we were told most patients get three times a week so that is what my dad gets. His wounds are really what is causing his pain. He is dead weight for the most part and my elderly frail mother can not turn him to do it herself. What gets me is Care isn’t available on the weekend . Interested if anyone else has been in this horrible situation.

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Nikki when you asked for an opinion, what do you mean & from whom?
If you have questions or concerns please discuss them with whoever wrote the orders for hospice.
If you aren’t satisfied with the answers, you can switch hospices or take your family member off of hospice care. You are not powerless.
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I understand your situation cause I’m feeling the same. When Hospice was first brought upon us everything sounds so wonderful. Call whenever we need and someone will be there.. yea after you answered a gazillion questions and still need to wait over a hour to see help. They don’t really care if you seek help or if your loved one is feeling better they just want you stock up on pain medicine. I once asked for an opinion on my dad because he doesn’t seems like someone’s dying soon and they seems not to really care except to access him like they’re supposed to do and just again filled up on pain meds. I regret signing him up for it because they’re not supportive at all, just good for pushing pain meds and Activan.
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Interviewing other hospices is certainly an alternative but his care won’t change much. Getting him out of bed without major pre-medication will be so painful.

Daily wound care by professional staff won’t happen either. although his family can do it once instructed. It is not simple woundcare etu

This is a terrible situation.
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Good answers above. Be sure to interview other hospices. If you find one that you like better, switch.
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Katsee,
I'm sorry to hear about your dads condition. I know it affects the whole family and is very painful.

I need to clarify something you said, "...but (I) feel efforts should have been made to get him out of bed when he first got home so that the stage 4 bedsores he had could stand a chance." Honey, a stage 4 bedsore would take months to heal under perfect conditions!
I've had patients (in the old days) in the hospital through 2-3 seasons (9 months) trying to debrede, clean and heal decubitus sores.

I can pretty much guarantee that your dad will not have daily wound care. Every other day, unless infected, is the norm. The family will be expected to learn how to do wound care. The hospital's wound nurse or the hospice nurses can teach you how to care for them.

How in the world did he develop stage 4 ulcers anyway? Please don't be mad with hospice when it obviously was the fault of the care facility he was in.

I agree with Shane, he definitely needs (and qualifies) for an alternating air mattress. It should be covered through Medicare.
He needs to be turned every 2 hours or more often if possible. Try to avoid direct pressure on the wounds. Do you have a hospital bed for him?
Is he taking a Vitamin C pill every day for healing? And, unless it's contraindicated, increase the protein and calories (of any kind) to help healing.
Gently Massaging the area around the wounds
can provide more blood flow. I doubt that your dad would be a candidate for surgery for the ulcers.

The amount of care from hospice sounds about right. The hospice I work for has "Crisis Care" , a few 8 hour shifts (1-3 days) to get the patient or family stabilized and out of a "crisis" mode.
If the hospice isn't responsive, then try another.

What we provide is a;
Hospital bed, suction machine, oxygen (tanks or concentrator), tubing, wheel chair, bedside table, lotions/salves/skin protector, chux (underpads), diapers, urinal/bedpan, pain and anxiety meds. We don't provide 24 hour nursing care. Please refer to your folder when you signed up for the info you'll need and what's covered.

Hopefully you will find a hospice that fits your needs but you need to know what is provided first.

I wish you and yours the best.
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Katsee, I feel you could be misinterpreting what is the purpose of Hospice. Please go over the contract that was signed with Hospice to see what are their responsibilities. I really don't believe that wound care is part of Hospice responsibility.

You would need to hire an RN or a certified Aide who is experienced with wound care. Your Dad's doctor can write a script.
medicare.gov/coverage/doctor-and-other-health-care-provider-services

You mentioned you were in the health field, are you in hands-on care? Would you be comfortable learning how to manage your Dad's wound care? I realize not everyone would be comfortable doing that.

Both my parents had Hospice for their final days/weeks. The Hospice nurse worked hand-in-hand with the nurses/aides at the facilities where my parents were residing. Yes, the Hospice nurse came out once a week, or more if she was in the building she would stop by to see how my parents were doing. She would take vital signs, etc. and then leave for her next client. Couple times a week an Aide would come to give a parents a sponge bath. Couple times a week a volunteer would come by to hold a parents hand and talk to them. The Hospice nurse would check the charts regarding the pain meds.

As Shane had mentioned above, you might need to cancel Hospice to a later time frame.
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Interview a different hospice and change companies. Not all hospice companies are created equal.
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Sorry to hear that hospice isn’t meeting your standards.
Regarding wound care, does Home Care provide the 3x/week visits to perform woundcare? If so it’s my understanding that Medicare/Medicaid won’t pay for both.

If you want, you can discontinue hospice and have visiting nurses in to do his woundcare but will need a doctor’s order.

Or keep hospice and utilize pain management resources as those Stage 4 pressure ulcers must cause him great pain. I am hoping you have an alternating air pressure mattress on his bed; if not you can request one.

Hospice is not acute care. Once it is written it’s assumed the patient is not going to pursue any aggressive treatment to keep the person alive. I can’t say what his woundcare orders are but for Stg 4 I know from experience it is complicated and can take quite a bit of time to do dressing changes. 

Typically yes, the RN comes to see the person once per week and as needed in between. I believe that is the standard. 

That woundcare must be complicated @ Stage 4. Was the family taught how to do it?

You are in a very difficult situation, but if you feel that you aren’t getting enough care from Hospice, then discontinue it and take your father to the emergency room. Most likely they will admit him to assess his wounds and transfer him to a SNF to get him 24/7 care & woundcare. Realistically as well, woundcare will be 3x/week there too.

Hospice’s objective is comfort. To get your father out of bed sitting on those pressure ulcers is painful. Since the objective is comfort and really, not improvement or recovery, the staff probably made the choice to keep him in bed due to the pain.

I can imagine how hard this must be for your father, you & your family. Ask yourself what would your dad choose - to live miserably & continue to fight or let nature take its course.
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