I'm not sure if any one else is experiencing this but I hope they are not. My mother receives Hospice Care at home usually 1x weekly a nurse may or may not come by to take vitals. I live in a different state than my mother and my sister lives locally to her but works full time and has young children. My mother has stage four COPD and an eating disorder along with mental health issues (Depression/BPD/Severe Anxiety). Shes had triple bypass in the past as well along with fibromyalgia and several other uncomfortable ailments. My sister is her medical POA in this scenario since she is local however my mother really isnt of sound mind to make any medical decisions on her own in my opinion.
Today being a great example of neglect within a hospice program, my mother began texting me incoherent letters earlier. I called and was able to get her on the line after a few tries and she told me she was having a heart attack/severe chest pains and needed help.
I called emergency dispatch because regardless of heart attack, panic attack or even an unintentional O.D from pain medication the fact that she weighs 80lbs any of these things could result in death. The EMTs said they were required to call her hospice care and ultimately her hospice care said they would dispatch a nurse immediately instead of her going to the hospital despite the fact that she clearly needed a blood panel and/or EKG.
My mothers aide that she gets twice a week arrived and noted that she was very disoriented. My sister left work and sent videos of her state which was devastating. She called emergency dispatch again. The second EMT spoke with her hospice center(3 hours after they said they would send a nurse) and they said they were "too busy to send anyone". The EMT noted that they were rude/abrasive and dismissive and that he had never experienced that kind of exchange before.
Once we got my mother to the hospital the misconduct continued. They contacted her hospice and relayed to my sister that they think she probably just overdosed and that she has a DNR so there isnt much they can do. They put her in the waiting room. My sister relayed that my mother isnt of sound mind to be signing DNR's or anything medically which is why shes power of attorney and that she never agreed to a DNR with hospice or the hospital system and they behaved like thats irrelevant? They are treating her like absolute scum. My sister is sending me videos of her in the hospital waiting room falling over herself and screaming "help" and then forgetting where she is.
I'm just sickened. I googled it and there are so many articles about neglect. One even showing a study of hospice in which over 400 facilities surveyed had 1/3 of their patients die without having seen a hospice nurse for over 48 hours prior.
How is this legal?
Understanding this will help you understand why your mom has a DNR and EMT wouldn't respond without speaking to hospice.
I would definitely find a new hospice provider. One that isn't to busy to respond to their patient.
It sounds like your mom isn't able to self medicate anymore, which means bringing a caregiver in or going yourself to be there and administer medication.
If there is one thing that was reinforced to me while reading this thread, is that Hospice is very different from location to location, agency by agency. In Florida when my mom was dying of Lung Cancer, they only came in when it was determined she had reached the end stages, meaning today, or next week. It was less than a day. Looking back, by the end we had found amazing private care givers who lived in home and my sister and I were able to be there with my mom in her last hours. My mom went from diagnosis to death very quickly. Perhaps the "perfect way to go". She was able to make amends with some people and be surrounded by loved ones, but did not suffer extensively for months or years.
That said, who was with mom when she was signed up for hospice services? Since she isn't of sound mind, this was not something she would have been able to agree to of her own devices; her POA/DPOA would have been the one. Was it your sister?
Hospice should have explained to you that, while the patient is using hospice services, unless the patient is in a hospice facility, the FAMILY is 99% responsible for the patient's care. At home hospice DOES NOT provide 24/7 care. Does your mom live alone? If so, I'm actually surprised that hospice even agreed to take her on as a patient within her own home, if there was no 24/7 home support. My mom's hospice was extremely clear about this - without 24/7 support in mom's house, she would have to either move into a hospice facility/nursing facility or in with a family member in order to receive services.
I think you - or your sister - is either getting conflicting information, or didn't understand the mission of hospice. You say: "My sister relayed that my mother isn't of sound mind to be signing DNR's or anything medically which is why she's power of attorney and that she never agreed to a DNR with hospice or the hospital system and they behaved like that's irrelevant?" When mom was signed up for hospice services, they almost assuredly had her/POA sign a DNR. I strongly doubt they would have taken her as a patient if one was refused.
Hospice is for patients at the end of their life. It is to make them comfortable, keep them free from pain and anxiety, and keep them home if it is at all feasible. It should have been explained to you that, while in hospice, the patient/patient's representative is agreeing that they don't want any life-extending procedures. It should also have been explained to you that AT ANY TIME the patient/representative wants to terminate hospice services, that is 100% ok; the patient/representative can seek life extending procedures after they leave the program if they wish. And if they then decide to come back to hospice, they will be accepted back into the program.
If you are unhappy with the current services, you have the option to switch hospice providers, or to stop the services altogether. But regardless of what you choose, it doesn't sound like it's safe for mom to be living alone anymore, if indeed she is.
I hope you can come to a decision that is best for mom and brings you all some peace.
In its most basic terms, Hospice = DNR. They are there to help with end-of-life, not to treat emergencies and prolong life. If you go to the hospital, they take you off hospice, because that's contradictory to what hospice is for.
I would definitely get another hospice company lined up (choose a smaller one if you're with a large one, or vice versa). Once you decide on another company, they should take over contacting the first company and arranging the transfer of your mom to their care. The first company will take all the medical equipment they provided (bed, commode, etc.) and the second one will bring all that stuff back in, ideally within the same time frame.
I had to change companies with my dad because Vitas (big company) was TERRIBLE. To their credit, though, they worked with the new company (a small one), and I only had to put my dad in his old bed for 45 minutes while everything was changed out. He wasn't inconvenienced at all.
Nevertheless, you and your sister (especially her, since she's the POA) need to understand how hospice works. All three hospice companies I worked with (I used them for my mother as well) had lengthy conversations with me to explain how hospice works and answered all my questions. Do not sign anything you don't understand, because you need to understand what's going on. Take advantage of the social workers they provide, as well as the support for the family, because it truly helps.
Hospice, I am sure you know, is END OF LIFE CARE. That is, Hospice comes in when the end of life is expected any time, and almost certainly within the next 6 months. Hospice comes in only when it is recognized that the end of life is the expected outcome, and that no further treatment is wanted. This is/must be signed by Mom's MD with her accepting (if she is capable of decisions) and the family aware. MD and Hospice explains all this to patient and to POA and signatures are done. Hospice patients are ALWAYS DNR. They may be treated for comfort care (low oxygenation, choking, painful UTIs, pnemonias that cause choking and distress and etc.}
It is very unusual to ever transport a patient who is on hospice to the Hospital unless there is a great deal of suffering that cannot be alleviated by administration of hospice medications.
I am afraid that both you and your sister don't fully understand Hospice care and it is time now for a zoom call meeting or something other. Your Mom and the two of you need to understand Hospice Care. It is an option. No one forces someone to accept hospice. But if you DO accept hospice it is with the realization that the next step is not further testing, further treatment, further hope of a cure. Hospice is end of life care.
I wish you the very best. You will have to communicate with all best you can. I recognize how hard it is not being there. There is often a lot of misunderstanding.
And yes, many hospice patients die without an RN there. RNs would be there only to administer meds. In most cases family is trained in the administration of hospice medications such as morphine, and etc.
So sorry for all of this pain and frustration. You must discuss with hospice, if you choose to keep the service, what to expect in future.
And no, there was nothing illegal in what you explained to us.
My best to you. Clearly Mom is very ill and you and your Sister in great pain. I am really very sorry, but it is crucial you communicate with and understand Hospice, and whether to keep them, or to keep DNR Status.
There are no life-saving measures once a person is enrolled in Hospice. Life is taking its natural course. By enrolling a loved one in Hospice, the family is taking them home to live out their final days/months. Hospice will provide comfort care to ease the patient and their family through the end-of-life transition. An in-home caregiver (often the family member) may need to be present at all times to help with meals, medication management, toileting, etc.
When you see your loved one suffering, it is natural to panic and want to ‘save’ them. But that is contrary to Hospice care. Nevertheless, the POA can revoke the DNR (and Hospice) and demand medical attention. The patient may be suspended from the Hospice program but can reapply later as circumstances change.
The rudeness of your Hospice on-call medical team added to your stress and concern. A 24/7 nurse should have been dispatched but keep in mind that the nurse visit is subject to availability. Your sister, as POA, can file a report about a rude employee, but I don't see any abuse in what you've stated. Contact the patient advocate of the hospice agency or tell a Medicare beneficiary ombudsman that you'd like to file a complaint, and he or she can help you.
To receive Hospice a DNR needs to be in place. A doctor signs off on it as does the client or their POA. In your situation, thats your sister. On Hospice you are told no extreme measures will be taken so no hospital. If you do opt for a hospital, Hospice can discharge the client.
If you nor sister can be with Mom 24/7, then you either hire some one and that would be at least an LPN because CNAs cannot distribute meds unless Medtechs. This Hospice should have trained a family member on how to distribute meds. You can place her in a NH under Hospice care or place her in a Hospice house. But, the cost of the facility falls on the client. Medicare only pays for the service.
I just reread your post. If your Mom had complained of chest pains while a nurse was there nothing would have been done but give her morphine for the pain. When someone is receiving Hospice its because the doctor's have said there is nothing more that can be done. The person is dying and now comfort care is needed and Hospice is recommended. The person has agreed that no extreme measures will be taken to keep them alive. If they stop breathing, they will not be resuscitated. If they have a heart attack they will not be rushed to the hospital. Hospice means the person has chosen no life giving measures and is ready to die. If you are not ready for Mom to die then take her off Hospice.
The hospital was right in what they did and so were the EMTs. There was a DNR in place. It looks like you nor your sister understood how Hospice works and I am sorry for that.
Vitas is part of Chemed. Their other division is Roto-Rooter, which pays their employees literally zero for drive time or estimates or callbacks on other people. It's mostly commission and the big payday comes when the employee gets a customer to pay more and more so that the employee can eat. By that time they are done feeling bad about it.
Injecting the Roto-Rooter attitude--this was Chemed's first business--into the business of caring for dying people is frankly scary.
You well may be looking at the end here, bubs, and I feel awful telling you that. I hope doctors are leveling with you. I think a ventilator may simply prolong your Mom's torment.
You and Sis have hard decisions coming I am afraid. I would make them the best you can knowing what her overall opinion was of how hard she wished to fight, of what she was willing to go through to buy more time, given that she is not recovering well, and with COPD she may never be able to do so. In fact, with the smoking, I can say she will not.
As a nurse I fear death NOT AT ALL, but the torment involved in trying to live but a bit more time in torment? That I fear with all that's in me.
I am wishing you good luck and thanking you for the update and am so sorry for all you are enduring, and your poor Mom as well.
As of now the doctors have determined that my mother has sepsis and have moved her to the PCU. Her medication came up in blood panels (Methadone/Xanax) but levels were not provided to determine if she took more than what hospice was prescribing. She is more lucid than she was yesterday but very much pushing the narrative of wanting a DNR/Hospice for her meds. The doctor relayed that he did not believe based on his discussions with her that she grasped what a DNR means (she thinks its strictly life support/ventilators) or what hospice is.
We are in a tricky transition period where my mother has several days where she is fine and can be independent but slowly and surely more recently there are days that are indicative of what is to come. (Shes 62). I caretook for my grandmother but she was not on any programs like these and ultimately she ended up with C-Diff from a hospital visit and was in rehab centers for the last 7 months of her life when she was at her worst.
I feel pretty helpless in this situation. I am in my early 30's and own a home with my fiance in a different state where we all grew up. My sister relocated over a decade ago and a few years ago when my mother was in better health after my grandmother passed she decided to move down there to get to know my sisters children better.
I feel a deep moral responsibility mixed with my real adult obligations and commitments I've made here. I love my mother and have dropped my life many times in the past to accomodate her needs. Financially, this doesn't seem to be an option as my spouse cannot afford to manage our mortgage on his income alone and my job is very demanding and centralized here. Long term I could find something more accommodating near her to try to help but my spouse would not be able to come and I have a commitment with him also. I'm very conflicted about what to do.
We live basically pay check to pay check. My sister does as well and while she is local to my mother her job is not remote, she has a 45 minute commute and a 4 year old and 13 year old child. Her husband is not very supportive or helpful but she loves and does as much as she can. She goes there every day after work. My mother has a "roommate" who was an old friend of my Aunt who passed away. Their relationship is rocky but she refuses to evict her despite the fact that she will absolutely not help in anyway financially or physically. The whole situation is very unfortunate.
With limited incomes and limited availability it feels like one or both of us will need to sacrifice our lives to accomodate future disintegration. My mother has COPD and still smokes, which we loathe. My sister has offered to move in or stay with her more often if she would quit especially with an oxygen concentrator in her room but she refuses and my sister is fearful of bringing her daughter into that environment often.
I know NONE of what I am saying has to do with misconduct or elderly abuse any longer I just feel very overwhelmed. I told my sister and my mother I would relocate her back up with me (something im sure my fiance internally wouldnt love) because I am confident that if she was in my home I could provide her with a better more comfortable life than what she is experiencing there, but she refuses because I am more firm than my sister is and she knows she wont get away with the negligence here under my care.
I really wish this wasnt such a red tape scenario to be able to have insurance and social security cover someone to come out more consistently to administer her medication as this is the main issue it seems.
This could account for the ups and downs.
Niether drug you listed can be cold turkeyed without serious withdrawal issues. Feeling like you are having a heart attack being one of them.
I would question whomever is helping with the meds, because the levels could be low right now because she has run out. Taking to many earlier in the month.
Sometimes we have to step away for our loved ones to get the help they need.
I recommend that you and your sister stop bailing her out of her consequences. She needs professional intervention at this point.
I know that is hard to do, especially when you don't really know what is going on because of all the gaslighting your mom is doing.
Best of luck getting this sorted out.
PS: your mom isn't elderly, maybe she's worn her body out but, lots of posters here are older then her caring for their loved ones.
You're spot on about hospice and APS walking hand and hand. I was flabbergasted when one of the nurses threatened to call APS on me. That was absurd.
I remember them being very hot about there being 24 hour care at the client's home. They were extremely intrusive and rude to not only myself and the second shift caregiver, but to the out-of-town family as well. They are of the belief that everyone owes them an explanation for anything they ask. No one does.
Dealing with them got to the point where I had to throw down the gauntlet with my client's son. I told him either they go, or I would and my girls follow me. He dropped hospice at home. His mother lived another three years after they'd gone.
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