My mom is 83, in nursing home since December 2018 with Chronic Heart Failure (CHF), moderate dementia and COPD.
Last week she had a bad few days with declining health, weakness and confusion. We were told to call in hospice as it was time to look into the bridge to hospice program.
After her evaluation, which happened after being treated for a touch of pneumonia in which she was doing much better, it was recommended that she go into full/regular hospice.
We asked lots of questions and agreed since the “professionals” deemed this the best choice.
Yesterday hospice called and said they wanted to stop all blood testing on mom. This means if she gets a touch of pneumonia again it will not be treated but allowed to progress while she is doped up, until it kills her. They said if she were to fall and break a bone they would not set it, just drug her for the pain... I am having real moral issues with this.
My fellow caregivers and daughters and sons, is this normal? Am I supposed to be ok with this? I feel like taking away basic medical care is very close to assisted suicide or even murder. Am I wrong?
I appreciate any advice or insight you all have. I know there is a ton of wisdom here and I’ve always counted on you all in the past so thanks in advance.
(FYI, she is on Medicaid if that matters)
Of course, doing so involves choice. Your mom does not have that choice or did not put in writing about her choice. You are in a TOUGH place but I would go with what the hospice physicians recommend. My dad died a year ago today after the hospice docs said there was nothing else to do but to give him morphine to relieve pain. It was heart-wrenching but who says dying is joyful, esp for the family members? I hope you find the courage to do what you think is right for your mom. Put yourself in her shoes and think how you would like to die.
Sounds like your mother is nearly in The same boat. The drugs only work so long for dementia. Lost my mom and brother to Alzheimers. I wouldn't wish that kind of ending on anyone. Hospice was there to ease the pain.
Having had animals all my life and being responsible for them, I will not let my dad suffer, either. Hospice will know when to offer only pain medication to ease suffering. You have to ask yourself, what quality of life does your mom have now?
End of life is what the DNR covers.
- cardiopulmonary Resuscitation - if patient has no pulse and is not breathing
- attempt resuscitate
- do not attempt
- medical interventions- if patient is found with a pulse and/or is breathing they will provide
- full treatment
- selective treatment
- (worse case) comfort-focused treatment with the goal of maximizing comfort relieve pain and suffering with the use of medication, etc.
First, Medicare, Medicaid it doesn’t matter.
my opinion of the professionals is a rather dark one I’m afraid. I believe when one is in a declining situation they are all for letting them pass away. I’m going to sound really cold here, and I apologize, but I think most of them are interested in saving time and money. I don’t think facility personnel care all that much; they see too much of this to get personally involved. And actually your mother hasn’t been there that long.
If you feel like she would like someone to fight for her to stay alive, if you want them to help her stay alive, then insist upon it. fight for it. You have to. Move her to a new facility if you have to.
I have heard of, and have seen one case, where people went into hospice got better and left so it doesn’t necessarily mean it’s “that time”. But if they’re going to remove all type of support that you feel is necessary and you’re not ready for that then don’t do it.
My sister has worked closely with hospital residents, Physicians and administration most of her life and she firmly believes you have to fight for what you want. She just knows you have to be your own advocate. So I always have. And I have had things change, got better doctors, stopped unnecessary medications, and I have had things get better for my clients but it’s only because I did something about it.
One time, my client had fallen and hurt her head where she had to have stitches above her eye. Being that she had Parkinson’s and dementia, there was a fear of neurological damage. The Doctor that came in to examine and diagnose her, even though I provided the records requested weeks in advance, he never saw her file. he basically shrugged his shoulders and said “oh well” and wanted to diagnose her anyway. I refused. I politely yet firmly got in his face and I refused on her behalf to allow him to do so until hospital staff found her records and he took the time to look at them first. Yes he was very pissed at me. They found them under another name (she had a hyphenated last name). I gave him an out to blame his staff and he calmed down. But he was wrong and my client, being 89, had no one to protect and defend her except me. That is my job and I take it very seriously. So that’s my story. Go with your gut. At least you won’t feel guilty for having tried when it didn’t feel right. I support you. We all do. Big hugs!
My mom is at home with me & DH. In addition to dimentia, she has developed neurogenic pulmonary edema caused by an inoperable acoustic neuroma that is displacing her brainstem.
After trying reasonable treatments, hospice was suggested by her GP.
For several months I fought it because I feel if she could clear her lungs, she could live for years yet.
After a very frightening night, I finally gave in and have just this past week, started hospice.
I am with you on this....
I am not going to discontinue giving her meds that they consider "treatment" rather than just comfort (thyroid, blood thinner etc).
One of the reasons I conceded, is because I was told that having hospice care can often give us more time because she is made more comfortable.
If she falls and breaks her hip, if course we wouldn't put her through a surgery, whether she was on hospice or not. However, I am not looking to give up and end her life sooner!!
Whatever meds or tests that are not covered through Hospice, her secondary insurance will cover or we'll pay out of pocket.
I addressed all of this with the administrator before signing, and was told that I could stop and restart hospice as often as needed.
I feel that judgement calls will need to be made, making certain that quality of life takes precedence over quantity.
For me; at this point hospice is in place as a 'just in case' measure, so that mom's wishes to pass at home can be honored.
I will not allow them to dictate her care, She's MY mom.
Hang in there. Hospice isn't a death sentence by any means. They try to keep the patient comfortable, not heal them. My Dad had to go off of them a few times due to falling, going to ER etc. But, they signed him back up once he was discharged from their care.
Your Mom's in a NH, so she's being cared for which is good. The hospice my dad was on let him take his own medication, & he abused it. He stayed on pain killers just to sleep & not deal with life.
Not setting a bone when someone is in bed 24/7 means little - when I was in university one guy told me about his brother who was in a coma after a car accident for nearly 3 months & on a check up later on the dr said 'it seems your broken leg healed well' & he said 'what broken leg?' ... it healed when he was immobile quite well - casting it is only necessary if you are walking/weight bearing/using it not laying flat in bed
Basically you must stop thinking about these things that are used to enhance long term survivability but can cause small hurts[needles] etc in the short term as no longer necessary - these people are experts in dying which they hope to do with as much dignity as possible for those in their care - it will take a bit of rethinking to see this but if you talk to them about your concerns they will help you through this hard time
When we signed him up, the nurse went over his meds with us to decide what was keeping him comfortable and what really was no longer needed. We were told if he fell and broke a bone or whatever and needed hospital attention, we would need to discharge him from hospice to receive attention, but he could be put back on when he returned to his facility. We never needed to do so. It sounded like another reader had a bad experience with that, so that would be something to discuss with your hospice provider. In our case, our family felt that putting our loved one on hospice was the best thing we did for him in his last years. Good luck to you. These are tough times.
Does you mother have written directives not to use unreasonable means to keep her alive in the event of a life threatening episode, DNR?
My friend volunteered at a hospice center/nursing home. Some folks residing there had been there for months, alert and enjoying her visits.
Another friend had a dad who was in the final stages of cancer, copd and dementia. He was weak, could not eat didn't recognize family or where he was. His pain was tremendous. Hospice set up a hospital bed in the living room for him. Helped with meds to make him comfortable until the end. Hospice also counselled the family members to help with the inevitable departure of a loved one.
Circumstances and your mother's situation should be weighed. If it does not feel right, do your checking. Find out why the hospice care center is recommending to do nothing for her except sedate her.
As you go forward be cautious...think of this the way you would when making any big decision...don't make the decision in the moment...sleep on it. Let yourself have time to talk or communicate with others. Did she have a primary care MD? Also know the guy, a well-regarded MD, who started an organization with access to top people for case review, at a company called Curadux. They have a website. They can provide unbiased and informed information to help make decisions. May be worth the cost.
We opted to use visiting nurse services instead. Actually that is all we received from the hospices, a weekly nurse visit. The hospices are paid 100+ dollars per day, 7 days per week. Along with that were the restriction of healing and cures.
Hospice take it too far with allowing an unrelated condition to take the life.
Perhaps there are special circumstance, when that is the best avenue, but the hospices apply it as a standard.
We test Christy's urine for UTI. The hospices said not to bother because they would not cure it. They would. give medicine for her comfort and let the UTI take her life. That is just wrong.
Christy does not comprehend the world, but she can laugh and cry.
She is still fulfilling some purpose.
I read an article where a man's wife, on hospice, found she could no longer play the piano, so they decided that it was time. The wife was romping with her sister the day before. The hospice administered drugs that would keep her out up to 14 days while she starved to death. The lady fooled them and died within just 48 hours, but I am haunted by the whole idea.
If a person cannot feed themselves or accept hand feeding, that is a natural process. Drugging to immobilize is not.
Tube feeding is not natural, or worth it. I tried that myself.
I recently had an kink in my pristine health myself. I spent 9 month in the hospital last year. If not for my exceptional health, I would have died, twice.
In that time I was able ponder Christy's situation.
I was bored, for weeks, tethered by all the monitors and drains, not able to get up and go to toilet. losing muscle, weakened by the opioids that only reduced the pain, and for a very short time.
Pain killers did not stop the pain.The only true relief I got is when they put me under for surgery.
We have found that cannabis is the best option. Christy has FTD. Drugs do not work and have adverse affects. We administer cannabis during a night seizure and it stops within a minute. There are no pharmaceuticals for FTD seizures.
We administer edibles twice a day to calm the chaos in her brain.
I have never been an user of even tobacco, rarely used aspirin. I never liked being buzzed. Occasionally I would accidentally ingest Christy's medicine and hated it. Other people seek that feeling.
There could have been a purpose for my mysterious illness.
I gathered much information for Christy's care.
Now with chronic pain myself, I decided to try Christy's herbs.
I take the same dose with her, at the same time, every day.
I discovered that the dose has been stronger than needed.
We were relying on the publicized recommendation and Christy's reactions.
I adjusted the dose and it is interesting that I can see her reaction at the same time as mine. It begins as a pleasant warming, flowing through the muscles from head to toe. The mental calming is not the same as buzz when the dose is correct and it is the greatest value for Christy. It lasts for 5-7 hours. I am now understanding Christy. I should have tested long ago to better serve Christy.
We choose to let only natural demise take Christy.
Not by a new condition, untreated.
Or by an immobilizer/comforter.
I believe that the heart is the decider of it's own accord.
In the meantime we are enjoying Christy and no potential guilt.
Hospice care is a "concept" - not a place. Hospice care can occur in a person's home - or in a specialized hospital wing designated for hospice patients.
This is very different than assisted suicide, in which something is done intentionally to hasten the person's death, at the patient's request. For example, a patient might choose to take a lethal dose of something to cease their respirations.
But I let nature take its course, QUALITY of life above all other, managing pain above all other. Keeping the person from suffering, keeping them warm, clean and well looked after is the main goal for me. Trying to keep somebody alive because of a guilty conscience is not about the person, it's about you. The best thing anyone can do with someone who is terminally ill is to let go and let whatever faith you believe in to take over. Death is going to happen regardless to all of us, it just depends on the when not the how. Let hospice come in and make the person comfortable if they are terminally ill. No one has to accept hospice. If the person is not terminally ill then do what they want you to do and keep them in the hospital. Save their life.
Most children should know what their parent wanted for that parent's death. Most parents usually show or talk about what they want you to do for them if the time draws near, even if they didn't write it down. You know your parent. Some parents are hard-headed and want you to go to the ends of the Earth to save them. Other parents are more spiritual and don't want all that intervention. It all depends on the parent's personality. You know your parent, so respond the way you know best, then make the decision and let go.
If the person wanted extensive intervention, let them have it. Let the doctor's insert tubes into them, do surgeries, force feed them, and do everything possible to keep them alive. Let the hospital/medical team treat them.
If it's the other way around, then call hospice and make them as comfortable as possible.
So there is really just 2 choices for conditions that are terminal or will become terminal. Keep taking them to the doctor/hospital and trying to work through the illness or keep them comfortable and try to maintain their health comfortably through a care facility or at home.
We are only caregivers, we are not suppose to think we are causing someone's demise. We didn't cause their illness or predicament. It's not our fault they are going through health problems. It's enough we are caring for the person and trying to have their best interest at heart. We should not guilt trip ourselves and think we killed them too. No one can stop a person's death journey. Be their advocate but don't think you can stop someone from dying. Dying is something that is never controlled by us, when someone has passed on, it's meant at that time for that person to leave the world.
So if you think hospice is immoral then don't do hospice and continue to treat conventionally. Do what the patient would want if they could tell you. Try to do the best you can with it. That's all you can really do in the end.
Sending you a big hug tonight, my friend.
What they are doing is wrong unless she has the mental capacity and has refused all treatment.
When my own mom had a bladder infection ignored and I was told that she refused antibiotics there were many arguments between her and I. She kept telling me that she knew what she was doing.
Hospice was lying. She was willing to take antibiotics.
They have a paper to keep by phone, almost everything is don't call 911.
The one exception even they had was a broken bone needed to be set.
Many try to keep you in their 6 month plan. Even though there's nothing curative that can be done they aren't supposed to refuse all medical treatment unless that is something that your mom asked for.
I understand how you feel. If there's more than one Hospice in your area please look into.
clarify what it is she has actually consented to also.
Uunfortunately you have to advocate for your mom.
God Bless
Not all hospice programs are the same.
Have u come to a decision?
Having said that... How poor is your mother's heart function? How would you rate her quality of life? The reason I ask, I can explain best by telling you about something I did that I later felt was a mistake.
My mother too had congestive heart failure, and vascular dementia, possibly with Alzheimer's involvement, CKD, you know the package I'm sure. When the posters went up in our PCP's surgery about vaccination against Pneumococcal Pneumonia, to me it was a no-brainer - oo yes please, put mother first on your list. So there I was, feeling all pleased with myself because I had conscientiously protected my mother against death from pneumonia (one type of it, anyway).
But as time went on, it gradually dawned on me that we were passing exit signs along her personal highway, and I hadn't given enough thought to what her remaining options were. How sure could I be that by ruling out pneumonia, I wasn't condemning her to a far more unpleasant death..?
What we are aiming for, the best we can hope for, is a soft landing. We know that our loved ones are going to die, we don't get to choose how, all we can do is try to manage their day-to-days and keep them free of pain and fear as far as possible.
Long story short, just to complete it - my mother had a major stroke, was hospitalised, rehabbed, returned home hemiplegic and bed bound, died four months after the stroke. Peacefully and pain-free. I'm not complaining, and as it turned out the pneumonia vaccine was neither here nor there.
If I were you, I would stick with the hospice decision for now and not cross bridges unless you come to them. If your mother becomes obviously ill with something that has a straightforward cure, or if she God forbid has a fall and a nasty open fracture, so that in a specific instance you feel that not treating her is indefensible, you can always withdraw her.