My husband is in hospice he has brain and lung cancer. They put him in hospice because of his brain tumors. He got sick 3 weeks ago chest congestion I asked the nurse and called the hotline to ask for antibiotics they would not give him anything until he got really bad. He has went from being able to setup walk to now he can't even hold his head up. I take care of him meaning I have to lift him to move him and clean him and he is bigger than I am. I called hospice asking can't I get help? They messed his meds all up in the start finally got that fixed then he got sick and it took them 3 weeks to give him anything. He should not be this bad right now. Hospice told me the only job they have to do is have the nurse come down vitals and meds. They can have someone give him a bath but that's it. It is my responsibility to take care and do everything else not theirs. I have never had to use hospice but some has been telling me that's not right. That they are supposed to help make things easier and all I do is cry and watch my husband get worse and I told him I promise I will always take care of him. But when you're watching your husband 24 7 and doing everything by yourself. I can't even take a shower unless I can get someone to come visit and set with him for a few. Am I wrong or do I have a lawsuit and need to find a new hospice?
The one you use should fit well for you and your husband ( considering you are walking through hell)
The most important criteria should be compassion and guidance during this horrible time.
Unfortunately the actual labor is NOT MUCH. A weekly nurse visit and twice weekly bath. A visit by other specialties such as the chaplain.
If there is a hospice “house” or other facility available ( such as a nursing home with an available hospice bed), there is RESPITE. You could use some respite. Or a nursing home if the truth were known.
A volunteer may offer amenities such as cutting your grass or whatever their talent allows ( maybe a sitter ?)
Talk to other hospices and people who have used them.
If you feel you may need antibiotics or an ER visit, learn how and how quickly you can come off ( and back on) hospice. This is a really really hard part because pneumonia has long been considered the “old folks friend” and the easy way to “go”, but it is NOT easy for loved ones now that we have antibiotics.
Some hospices are operated as non-profit through a religious or charitable organization and I have heard you may get better care and are not relentlessly pursued for final payment. A for-profit organization may be cutting corners on their expenses for a larger profit. My father had hospice but my sister who lived closest was the decision maker so this is only what I have been told by her and others. In the 36 years since my husband was diagnosed, I have lost count of the times I have been told by hospice agencies that Parkinson's is a diagnosis that would qualify him for hospice and I should consider it. I like to think a non-profit agency would not beat the bushes for new patients. I totally believe in hospice and will definitely use it appropriately when necessary. Below are a couple of links with more info.
https://www.hospicereport.com/how-for-profit-hospices-compare-to-non-profit-hospices/
https://pubmed.ncbi.nlm.nih.gov/22527254/
My MIL was in hospice at our home. I was very lucky that my husband was right there by my side doing everything with me. It was still hard. When one of us had to do the shopping, the other was on their own with her. We were up every night responding to her calls for pain medication. It was hard. Hospice did the same things they are doing for your husband. The hard truth is they are there for the patient’s medical needs, not the caregiver’s needs however great they are.
I think you should get some help. You shouldn’t be lifting him by yourself and you should be able to take a shower, have a meal, even get away for a breather if you need. Do you have family that could come for a few hours to give you some respite? A church you could turn to? If none of these are possible, hire some help. I believe there are minimum hours that an agency will require but you surely will need someone every day or at least every other day.
I have heard where hospice may not treat something like an infection if the patient can be kept comfortable. Of course you can cancel hospice if you disagree and want him treated. You (and he) have the final say.
someone in legal needs to assess damage caused to see if it woujd result in a case really
not sure about the antibiotics
tgey don’t give them out too easily overall because they weaken your system
Years ago I had three lots trying to get over bronchitis
it left my immune system so weak fur a few years catching anything and everything all year
so it’s best to speak to legal
And they assess if you have a winnable caae
sounds horrendous
Good luck
In January of 2023, my former mother in law was bathed every day by Hospice. She was bed bound. I was there, and saw it. It went on for a couple of months before she died.
At the time, I was thinking that she must have had some super duper insurance or some special Hospice arrangement. I’ve never heard of that, before or since. I was baffled.
I still don’t know the answer, but it does exist. 🤷🏻♀️
May I just add my 2 cents that will tell you there's no point in attempting to sure the hospice company. They will mount a mighty defense and have deep pockets. You don't.
As far as what you deem to be the crux of the problem is that your DH was not given antibiotics right at the time he got sick. IF the illness were, say, a simple cold, antibiotics would do nothing. Until a secondary infection occurs, antibiotics don't come into play.
I think your anger and sadness both are due to the fact your DH is dying, not that he has 'less time' now with you. Death is a very personal business and it's NEVER a 'good time' to have it happen. It sounds as if he is actively suffering and that is what you need to address. The 'infection' being treated or not probably has no bearing on when he does finally pass. And being angry about it won't help YOUR mental state.
If you really want, fire this Hospice Co and get another one. Be sure you KNOW EXACTLY what they will and won't be doing for care. As one poster said, it's 99% the family and 1% Hospice. (If you are home based hospice, that is).
You can't prove that the 'infection' was what took him down several levels in his health. That could be simply HIS timeline. I am truly sorry for your impending loss, but I would encourage you to A: find a Hospice Co you feel better about and B: spend your obvious energy on being with your DH in the moment.
Definitely find a new hospice provider but as already suggested, hang on to what you have until a new one is ready to start. Make a list of concerns and without berating the first company, have a list of questions based on your concerns to ask when a different company comes to do the evaluation. Interview more than one company. You can also come off of Hospice to go to ER and go back on Hospice afterwards. Of course they may consider lung cancer as the cause of the congestion.
My heart goes out to you and praying you get the answers and help you need.
My late husband who was completely bedridden for the last 22 months of his life and under hospice care in our home, received a bed bath twice a week from the hospice aides, and it was only when my husband was actively dying that his nurse came every day and that was only to change out his pain pump.
You may also start researching other companies that provide hospice care for one that is a better fit. Make sure to pay attention to services offered, who to contact for change in your husband's status, and who to contact for issues.
Please remember that hospice provides "comfort care" and not "curative care". They are not going to work towards curing illness - of any kind - or extending life but to help the client to be comfortable and enjoy their current life.
When my father's pain became more than he could bear (before the morphine was sufficiently increased), I hoped that he would die soon and be free from suffering.
I loved my mum, but I also wanted her to die before the pain became too bad, or her damaged lungs made her gasp for breath, as that would have filled her with fear.
Mum said that pneumonia was a friend to the sick. She had worked with the elderly most of her life and sat at many death beds. She felt that it was cruel to keep treating chest infections at the end of life.
I don't expect you to feel the same way - you saw your husband deteriorate rapidly, going from a man who was able to move a little to becoming bed-ridden. You feel that you have had time stolen from you.
Cancer stole that time.
I am so very sorry for you and your husband. I hope that you find strength and comfort from the love you share. That won't die: it will live in you.
It’s entirely likely that what he has is viral so there is absolutely no standard of care in giving antibiotics to someone with a viral infection.
If he then gets a secondary bacterial infection, then he gets antibiotics.
It seems to me that OP is struggling deeply with watching her husband die. This is obviously very understandable. She is also dealing with lack of sleep and no help.
I agree with you about that saying: pneumonia is a friend to the sick and dying.
I’m sorry your husband is dying.
First, care and neglect issues. I agree with BurntCaregiver that hospice agencies sometimes act like they have halos over their heads when in fact they have dollar signs over their heads. There are many hospice providers and they are all competing for business which is reimbursement from Medicare. Some agencies are better than others. Keep this one until you find another and then fire them and hope the new one is better.
You know this one sucks so you have
nothing to lose by trying another.
Second: Prepare for a tough legal battle. You must document everything that has happened up until now. That means dates, details, visitation notes, etc A successful lawsuit requires detailed notes and substantial proof. If you live in a “one-party” consent state in the US, it is legal for you to record a conversation where you are an active participant without notifying the other party that you are recording. Attorneys love audio or video recordings if taken legally. This means a refusal by the hospice company to provide needed antibiotics, or other care, if recorded, MIGHT be usable evidence of neglect IF it was YOUR CONVERSATION with them AND doing so is legal in your state or country. It is best to find an attorney who can give you proper legal advice for your situation before taking such action.
The most important issue is his care first. You can walk and chew gum at the same time and gather evidence of the first agencies malfeasance and neglect as a secondary job while you are finding a new agency to help you. Both care and legal issues are important. Agencies like the one you have will continue to neglect patients and collect money unless they are held accountable.
For very unfortunate personal reasons, I as a former RN, and through a horrible injury to a loved one have a whole lot of legal knowledge about personal injury suits involving negligence.
A suit requires SOLID PROOF. And testimony of exactly how, when and by whom that injury occurred.
It also demands that the person injured, but FOR this injury, would have lived long and well and earned a whole lot of money for their family.
It demands that an attorney invest 100s of thousands of dollars in research, record gathering and expert medical testimony in the full belief that a win will get millions of dollars for client and self.
While you recognize you are going to lose your beloved hubby from cancer of the brain, you feel SUBJECTIVELY (it's your opinion) that he is going earlier than he should have. That, unfortunately falls in the realm of opinion; I would bet that no physician told you such a thing. And this opinion couldn't be PROVEN by experts in court. No MD would ever get on the stand and say "Yes, but for what Hospice allowed here this man would have lived ___________months/years/decades longer."
Because attorneys have to pay up front for experts, they take now only suits in which there is injury that is CLEARLY provable, and that have huge payouts in terms of long term care. BECAUSE current law allows only 250,000 in damages. For an older person, damages are exponential DEcreased. It doesn't pay for them to do so.
Igloo has said it here many times and it is true, no matter how we are killed, after age 65 we simply are not worth a personal injury attorney's time and investment in our wrongful death. After a certain age we are society's liability, not worth much in the court systems. A sad and a hard fact to get hold of mentally, but a fact.
I am sorry for your grief. Grief counselors tell us that we avoid moving into grief by instead finding someone to blame. This is almost always a doctor, a hospital, nursing staff, missed diagnosis, convalescent places and Hospice. Our minds somehow tell us that if there is blame, then things can be changed. But even when there IS blame, loss often cannot be changed, and eventually we must enter that horrible grief that recognizes no matter how or why we have most certainly lost the most important thing in our world.
If you choose to pursue this be certain you yourself pay no money to an attorney.
There is no case here because the entities you wish to sue are dealing with a man who is dying of brain tumors. There are no damages and no certainty he would have lived longer but for something they "did". There can never be any proof of your suspicions, and no one you talk to will testify in court to what you believe happened.
I know that Burntcaregiver is involved in caregiving for a living and in management of same. But in this case I could not disagree more with her opinion that A) there is a lawsuit here B) there was wrongdoing here and C) that you should sue. However, I do believe you yourself may be comforted if you speak to several attorneys and hear this yourself. This will allow you to move on into the horrific work of grieving a man you love. Please get all the grief counseling you can possibly find. My heart goes out to you in your loss.
In questions such as yours our Forum often gets stuck in the mud of arguing among ourselves what CAN be done and what SHOULD be done. I would stake my own life on the fact that there is NOT any winnable lawsuit here. Rather than participate further in our argument back and forth here, I will bow away from this sad thread by suggesting you see at least two or three attorney's. They are the experts.
However, if antibiotics would have eased your Husband's symptoms if given earlier, I am truly sorry he did not receive them.
I certainly support any idea that if you are not confident with the current Hospice team, you seek a 2nd opinion. Seek out a different provider service as needed.
I think our 'Western Medicine' approach sometimes grows misconceptions about curative treatments. That it is the only way. That when someone is sick, they must get medicine.
It's natural to want hope & to want something to help ease our LO's suffering. We are lucky in this day & age to have the medications we do, especially pain relief medication. But I wonder if we also need cultural guildines to just let things be too.
I don't see this as a legal issue. I see it as anger & deep disappointment. Maybe misunderstandings & miscommunication too.
It is so different for you. Money is not the point, you have lost very little cash. Instead you want someone to be held responsible and punished, and very rightly too.
Find out what part of government is in charge of the Hospice – either as part of the government, or as the funder, or as the ‘licensing’ body. The complaint goes to them, and a lawyer might help to make it stick. If you don’t get what you want from the people ‘in charge’ in one of these ways, you can then take it to the Ombudsman to investigate. The Ombudsman can raise it with the governments involved. This may be a better way for you to do the right thing by your husband, and to try to ensure that it never happens again. It may sound like a lot of work for you, but in reality running a legal case is worse - the lawyer doesn't take it over, and it often dominates your life for years.
You have all our sympathy. It was a terrible thing to happen, and it should never happen again. We don't want you to suffer more.
Someone on this forum said that at one time they use to call , pneumonia, old man's best friend.
As for your hospice question, I don't have enough education to answer.
But I do know , before and after death everyone is angry and searching for answers. Most of those answers can't be found.
I will never know what happened after I left my father at the hospital er, during lock down. If it caused his heart attack.
Sometimes it's just life, and sometimes life just really sucks, and there is no answer.
Seriously, you should talk to a personal injury/medical malpractice lawyer
You are mistaken. Hospice is as of late being forced to take some accountability for their actions which include financial abuse of Medicare and private insurance including billing for services not even given, along with patient neglect and abuse.
Pretty much all law firms that take on cases of personal injury, care facility abuse and neglect, and medical malpractice (hospice would fall under this category), do not take a dime up front. If you get awarded damages, that's when they get paid.
Hospice should provide you with equipment that will make it SAFE and easy for you to care for him.
Usually a Sit to Stand or probably in your case a Hoyer Lift.
A CNA should be assigned and should be coming at least 2 times a week to give him a shower, a bath or a bed bath.
You can also request a Volunteer to stay with him while you get things done out of the home. Or use that time to take a shower, relax, do some yard work. (Having Volunteers is a Medicare/Medicaid REQUIREMENT!)
You can call and ask to talk to the Team manager. (Each Hospice will have Teams that are assigned to areas and each Team has a Care Manager.)
They are correct that they do not do hands on day to day care. They will place him in the In Patient Unit or a facility they have an agreement with for Pain and Symptom Management or for RESPITE.
Respite is covered by Medicare and Medicaid. I think at this point you could ask for Respite. Contact your Nurse that is assigned or the Social Worker that should be assigned and tell them that you need to schedule a Respite stay.
I would say that if you get no response from the Care Manager that you do any and all of the following.
If they have a presence on Social Media and there are reviews...add your review.
Contact a few other Hospice in your area and make the switch to another Hospice. Interview each and ask what they will do, what they provide.
Hospice pulls many scams not only financial ones. I hope this OP gets to a lawyer and holds them accountable for what sounds like gross neglect of her husband when he was supposed to be under their "care".
You don't have a lawsuit, but you can hire a new hospice company if you'd like.
My condolences to you on this terribly difficult situation. I experienced it twice with both of my parents and it wasn't easy, to say the least. But my folks were in Assisted Living so I didn't have to do the hands on caregiving 24/7 like you do. It's too much and you need a break. Please hire an aide even if it's only for a few hours at a pop. You need some time for YOURSELF. Sending you a hug and a prayer for clarity.
Hospice will inform you what they can provide in terms of care. Normally they provide access to Social Worker, Access to Clergy, two to three bedbaths per week. One RN visit once a week. This is paid for by Medicare.
Hospice also can order rental equipment to ease your caring for your hubby--hospital bed, bedside commode and etc.
And finally, no, you have no reason to sue hospice.
If you require more help you will have to hire in more help. If you cannot continue in 24/7 care of your husband you may need to consider placement in a facility that can provide said care.
You need to accept the fact he’s dying and come to terms with it. Nothing you, hospice, or anyone else can do will stop his decline and death.