Socrealtor Asked April 20, 2024
Is it common to stop diabetic care when someone is placed in hospice care?
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We were advised that Hospice would manage the diagnosed life ending illness. In our case that was Parkinson's. We were also advised that Hospice would not manage or be involved in non life ending diseases like diabetes
Suddenly Hospice has advised that the diabetic meds would cease and there would be no more blood monitoring. This seems contrary to the original parameters. Does this make sense? Has anyone had a similar experience?
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I think this is part of the issue here. You are no longer able to manage your brothers care long distance.
Why isn't the relative that lives in the same city as your brother who is the backup medical POA stepping up at this point?
Are you holding them back from doing so because you still think you can handle this long distance? Based on your post, you can't.
Your brother needs to be moved from the current facility, but you cannot get that going due to your own health issues and obligations.
Let the nearby relative start this process for you. It is time to step back and delegate to the backup medical POA so your brother can get his diabetic medication he needs right now.
Adding: based on your update below this hospice agency and the doctor are being medically neglectful. I would have an attorney draw up a letter stating all of the facts and letting them know you will sue their asses to kingdom come if they don't stop what is medical torture by withholding and playing around with his insulin. Of course he should be with a NEW hospice agency facility but this should at least get them to do what they are supposed to do in the meantime.
That would have been like when my late husband was under hospice care in our home and suffered from seizures, and they would have said that they would no longer pay for his 3 seizure medications, because he didn't need them because he was supposedly dying in 6 months. They did not ever say that and if they would have I would have raised holy hell. And my husband was under hospice care for the last 22 months of his life.
You need to call and talk to whoever is in charge of your hospice agency and get things straight. And if you can't with them, time for a different hospice agency.
So very angry in your behalf and sorry that you are getting this additional layer of crap on top of your brother's declining health. Fight back.
Insofar as the treatment of his diabetes: assuming your brother is type 2, I know from my own research into diabetes when I was diagnosed, that insulin in NH patients (and I am assuming your brother is in some sort of nursing facility) has the potential to be problematic because of the possibility of a hypoglycemic episode. When people are elderly or cognitively impaired, they can't always recognize and/or verbalize a low blood sugar emergency; it's why the ADA's A1C recommendation for elderly people in institutionalized care is quite a bit higher than the normal recommendation.
Maybe this is why this doctor is against people on hospice continuing diabetic care? Or maybe he's just one of those "I know best" kind of doctors, who knows? Either way, it seems to me that your brother is having symptoms of high sugar and deserves to have them treated.
If you haven't already asked, maybe reach out to your brother's hospice again, and explain all of this to them. The purpose of hospice is to keep patients comfortable at the end of their life, and if your brother's sugar levels are making him uncomfortable, THEN maybe hospice can step in? Maybe instead of insulin, they can use metFormin, which might bring his numbers down to a better, more manageable level without the increased risk of hypoglycemia.
Now, your other option might be, if your brother isn't at the end-of-life stage yet, to take him off hospice at this time, in which case the doctor at the facility could no longer hide behind this excuse that patients on hospice shouldn't be treated for diabetes. You can always put him back into hospice if he shows more decline. Get him back on insulin for a few weeks and see if you can get the numbers back down to a more normal range. Unless hospice is currently managing his pain, this might be an easier option for you, trying to manage this situation long distance. I know this is not an ideal option, but maybe it's the best one you have.
Have you called his endocrinologist to ask him/her about all of this?
Hospice is appropriate because of his steady decline. He is not yet at the "end of life" stage. All agree on that. When that time does come, we are in agreement that we will stop his diabetic care. That is NOT now.
We had an outside endocrinologist for the diabetes, but the facility never got the blood work to that doctor on time for appointments. Yes, we gave plenty of notice and follow up. Then the local wheel chair transportation company could not always transport on appointment days (lack of drivers, always at the last minute). Televisit didn't work because the blood work was not timely reported and the facility is in a black hole with poor reception.
In February I asked if the "house" doctor could and would manage his diabetic care.
I was told yes he could. The house doctor has 30 years of medical experience and many patients with diabetes. We made that change.
Sometimes in May the house doctor stopped the diabetes meds without consulting me, POA. I arranged to continue diabetic readings daily and a weekly report. All are between 250 and 325 daily. The house doctor then put in an order for a daily low dose of long term insulin. Readings haven't changed with that low dose which is less than half of his prior dosage.
It took 3 weeks to get this doctor to return my calls. When he did, he expressed a personal belief that Hospice patients should not receive diabetic care. This has not been previously communicated. That doctor doesn't work for Hospice. This was a new twist. He informed me he would not honor my requests and hung up on me!
The facility cannot give insulin without an order.
Again, this is separate from Hospice and NOT the policy of the Hospice that is caring for my brother. I find myself between a rock and a hard place.
Not having insulin causes much more frequent urination, discomfort, many "accidents" without immediate help, other symptoms, and more confusion than usual. It is not kind.
I know I can complain about the house doctor to the ombudsman. But the reality is if I climb much higher I will ultimately be forced to move my brother to another facility.
I live out of state and am undergoing medical treatment that prevents me from traveling at this time. So finding out if there is another place and executing a move are prohibited by my circumstances for the next few months. There is no one else able to be his POA.
Please don't lecture me on the pros and cons of diabetic care at this point.
Does anyone have a suggestion that would be helpful, or has anyone been in this situation?
Apparently I am on the facility's "do not call" list as no one will return my calls. I am documenting everything. I am exhausted and frustrated.
‘Some people live a long time while on hospice and some diabetics feel awful when their glucose isn’t controlled.
To me, they are out of their lane if this is not the meds they are responsible for.
Tell me why at the end of life with death near, you want to continue what is essentially an unnecessary medication? What do you think will happen exactly?
Accepting that your loved one is dying is difficult. It’s not your fault that your loved one is going to die in the near future.
And is he insulin dependent?
what an angel..
so, if you feel overwhelmed, with your situation, do look into a caregiver. One man came in. He was nice and all, but my husband was a big man. I needed someone a bit more stronger to maneuver him easier.
Before the caregiver, my husband was irritated. His body was shutting down, and I accidentally forgot the meds in sequence, and that is so important. He didn’t need to suffer from my mistakes.. it was hard.. at least with the caregiver there, I was not alone… I had the best help .
Hospice is good, but they are not there long enough. They are there for an hour or so, then gone…
hopefully with dignity.
You want to make sure they are comfortable.
The hospice team I had for my spouse had:
chaplain, musician, nurse, and a doctor, and once a week for someone to come in and wash him.
My friend said I needed more care than what hospice would provide. So she asked hospice for referral for a caregiver. This man came in, said good morning to me, and then directed all his attention to my husband. He could start by a quick bed bath, face wash, administer the medications on time and log it in. Oh what a difference!
I tried. I failed. This man did not skip a moment. The medications that gave him comfort and less pain were in sequence. He explained to me what my husband was going through, and why..
I wished I had known a week or so prior to when my friend said I needed a man to help care for my husband. He turned him, cleaned him changed him . He was so peaceful. I did not know how to do these things with grace and ease. I cannot thank his gentleman enough. Hy husband was in good care and peace. The caregiver just gave me an extra layer of help that I didn’t know I needed. What a blessing.
If you feel overwhelmed, hire a caregiver to come in for a few hours a few days a week.
yes, it was out of pocket pay.. but we needed it. I didn’t realize it.
I wished I had known sooner about buying an extra layer of caregiving. He would have been comfortable during this whole process. It was way too much for me. I thought I was doing ok… hindsight..NOPE. I tried, but I wasn’t trained.
But then, Hospice discontinued his diabetes meds without discussing with me. I am POA. That rubbed me the wrong way. It's hard not to see this in a negative light.
I feel that family would blame me for his death if I stop the diabetic meds after he has been on them for over 30 years. An abrupt stop does not seem kind or reasonable to me. As I see it, at the least, a consultation was in order.
This is not easy.
I found this online - from just a random Hospice Service:
"Patients with Type 2 diabetes in hospice care will have their medication reviewed and they may be able to stop taking insulin as high blood sugar at end of life will not cause additional complications, and low blood sugar symptoms caused by continuing to take insulin can cause additional discomfort".
I would want someone senior in the Hospice Co to explain exactly what they are suggesting & why. To explain how it will effect my LO & to explain it in a way I could understand.