Does anyone have any thoughts or suggestions about revoking hospice when a loved one’s health improves? My mom is 88 years old and went into home hospice about three months ago. She had been in an SNF for rehab after receiving a spinal fracture in a fall, but her condition declined to where she was in constant pain, g sparingly at this point. Now that her fracture has healed, she is doing so much better. She is eating again, mostly pain-free, getting stronger, and is cognitively much better (she has mild dementia). She has not walked more than a few steps since the fall but she is able to stand and assist with transfers. I think that she could regain some mobility with physical therapy, but that doesn’t seem to be an option if she stays on hospice. She will be a fall risk, but would like to be able to get around with a walker. I also wonder if she should be restarting her diabetes medicine now that she’s eating again and starting to put some weight back on. I have asked the hospice nurse, but I’m not getting a clear response. Should we stick with hospice and see how she does, or take her off it in order to get PT and resume her regular medicine?
It goes in this order Home Health, Palliative and Hospice, like elementary school, middle school and high school and if anyone goes on any of the 3 it means they are a vulnerable adult who most likely is not going to improve in that cycle. All based on need. HOspice does not mean someone's death imminent (weeks out), and the medicare or insurance benefit offers unlimited numbers of days as long as enough decline is shown. Sometimes people try to get those benefits but don't qualify as they need not there.
I get this is really hard to watch someone you love decline or slightly improve only to possibly decline again, but it is like raising a child only in reverse. Hospice is about comfort measures at home and the person has to qualify to get it. And some people are on Hospice for years, as long as enough decline shown, and sometimes on Hospice or Palliative people qualify for PT as part of the daily benefit if appropriate. Keep in mind there is shortage of physical therapists that go into the home so be prepared. I just think it is a risk to lose services to ask for curative things that might not work, and I know this is well meaning but think that through, as the ask might be enough for the nurse to discharge her from hospice, and then it will be decided for you to prove that she is eligible for PT in the home or face the option of transferring her to and fro as a fall risk.
I work in hospice and I love it, but it is not always easy as families and the communities misunderstand it, how it works and it has many myths, and some people find out about those myths the hard way. I love Hospice because we are able to bring services or options to families at the most difficult times in their life, and the barrier to receive those services or become knowledgeable about them not a fun camping trip to a national park, as alot of denial, enabling and arguing occurs instead of moving on to acceptance, anger or other parts of the grief cycle. We are talking about the end of the life cycle, and honoring that person's experiences with that as holistically as possible.
I have also seen alot of people including hospice workers think they have the decision making power with this when it actually lies in the clinical hands of the hospice decision makers, the hospice RN and doctor and ultimately hospice even the ones affiliated with a nonprofit are ran like a business.
It's great that your mum's pain has significantly improved and that home care is working well.
It's quite possible that your mum's apparent cognitive improvement is due to the reduction in pain and because she's eating more. However, this will be temporary - dementia doesn't get better, although it can have ups and downs.
Your mum is still very fragile. If she were to have another fall, her spine will be a weak spot and could break again. (It's fabulous that it did heal, btw.) So, your mum will need a lot of support if she were to become ambulatory again, as potential falls would be a greater risk now.
PT is unlikely to work well for your mum because she has dementia, so doesn't have the willpower to keep up with the exercises or to work through pain. You can't change this.
I wouldn't make the decision to take your mum off hospice, but if your mum improves enough, as others have said, the decision may be made for you.
Your mum's quality of life will continue to diminish. Doing everything to preserve life, without enhancing life, isn't a worthy goal. Hospice is focused on making your mum comfortable which is a good thing.
You won't get a real response from hospice about resuming meds because they primarily deal with helping people to die and that excludes meds that actually keeps you living. If she took diabetes meds before, probably time to resume those.
I think better to have her back on her meds and getting stronger since things are getting a little better for her. If she takes a turn for the worse, you can always go back to hospice.
Do what you want, but be prepared to assume the difficulty of doing what hospice does for her now.
Also, about PT helping her regain some mobility: It may be possible for PT to improve her muscle tone, but with dementia, her brain may not be able to operate those muscles even close to what it could three months ago. She may not understand how to use a walker, and her balance is likely to be off, also probably because of the dementia. Her cognition can't and won't improve, even though you hope it will. FWIW, I've been through this with my husband in the past couple of months, and he is in a memory care unit now, so I've seen plenty of other cases like this there. The fall risk can be scary. They can't stop themselves from going down, and the setback from even one fall can be worse than you could have imagined.
All of this is worth thinking about. There are no easy answers, and I wish you luck in sorting out these issues.
My brother was in hospice care 2x before he died ~ in both instances he had improved (note, he was in his late 20s) and he decided to go back into an assisted living facility where he had lived for several years. He was still finding some joy in living and that seemed to be a good reason for him to resume his life in assisted living. After about 4 years, he started to get pneumonia repeatedly and was in and out of the hospital and eventually back in hospice where he died as peacefully as possible. It was a process that allowed him to prepare. Even when he had seven days to live after being taken off of life support, he asked for oxygen for one more day and then did not accept any more life support. Blessings to you and yours.
I would tell the hospice team that I greatly appreciate the care and support they provide and hope we can work together to enhance her comfort and quality of life.
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fact you said she has mild dementia sort of red flags on moving her
maybe readdress in 6-12 months
of the dementia deteriorates then it’s needless back tracking and upheaval
My mom was on hospice for 18 long months while she was in a SNF. Was completely bedfast. Like twice she started perking up, big time… like making meal requests, hitting the call button to be taken to toilet and to shower, asking to be put in her geri chair to use the telephone at the nurses station. The hospice coordinators called to let me know, mom was going to get a full on assessment for their EOM report to Medicare. She had a lil TIA transient ischemic attack right b4 the evaluation so hospice continued. I was beyond surprised that for a completely bedfast patient this could even be considered something to do, but it can be.
The only way one can continue to remain under hospice care is if the patient continues to decline, so if mom keeps improving, they will eventually stop their services.
Ultimately this decision is up to your mother.
As in "Mom do you still want to go to doctors and hospitals and treat all these things that will prey on you now as you age, or should be keep you safe and comfortable knowing that we are all headed the same place. You are in hospice care now and they won't have you go to hospital for treatments. Is that what you want? Or do you want to go to doctors and hospitals again".
If she has the cognition still to make that decision she makes it. If she doesn't, you are the one who knows her best, and you make it as next of kin or POA --or that person makes it for her.
I know what I would want were you my daughter, and you would know as well, just as my daughter does.
Good luck. This is tough stuff. But that spine isn't going to correct itself again.This isn't going to get a whole lot better. IMHO as a retired old nurse of 82.