Should I come to terms with hospice recommendations when I feel it is immoral?

If you feel it is immoral & your mother has not told you what her wishes are; then, no you must follow how you feel about the situation not what others want you to do. They may make it hard on you to "stick to your guns"; but, in the long run, you have to live with yourself, they don't. I put my mother on Hospice too soon & it was Hell trying to get the paperwork revoked. (They had told me there wouldn't be any problem if I decided to do so . . . such lies.) If I hadn't revoked Hospice, my mother would have died because even though she was of sound mind, they wouldn't have listened to her her decision to do so. When I put Mom on Hospice the 2nd time, the timing was right because she was already dying & what they did for her (pain medication wise helped her peacefully go. She had stopped taking her medication was barely eating anything & she had told me she was tired & didn't want to continue on. She was bedridden, hardly had any flesh on her bones & she had lost interest in everything. So the situation was very, very different that it had been the 1st time. If it were time for your mom to be on Hospice you'd know. It doesn't matter that she has the medical issues you described, if you feel it would be a form of "sanctified killing" then don't do it.

OP has not responded since the 11th.

It's not assisted suicide or murder. It's allowing a natural death to occur without any extraordinary intervention. When it's my time and I am terminally ill, I know I wouldn't want any extraordinary intervention. I've stated it in my advance directive.

My mother, 93, is in hospice. Thank God she is. What are your objections? More eyes. More care. More services. More communucation.

Do you realize that those at end of life without hospice die in pain, substantial pain.

Hospice, night shift dropped the ball. She would not stay. I called my gals, and they told her I know mom, but she did not want to stay. Perhaps she was new to this... Told me and showed me how to crush morphine pill and rub it against inside cheek so body could absorb it... That was messed up. I did as she said. She forgot to tell me about the Ativan that should have gone along with morphine. So if anyone is in this predicament. Do not forget the ativan.. very important. helps to ease the brain from the body i suppose. I wish mom's was peaceful... It was a struggle. My aunt's roommate had the interveinous morphine, much better. Do check the way your hospice will administer the drug. That is important too. And it may vary on the DNR that is signed.

That is so well said. I lost my mom in Feb and she was under hospice care . Mom lived in a nursing home the last year and unable to get out of bed without a lift to help her. I like the way you said we are their advocate which is so true. Mom got the best care under hospice in fact the last 4 days we had mom at the hospice house. It was the best decision we made. Mom was given baths daily and turned every two hours. Mom was made the most comfortable she could have been. It's a decision with no regrets... Mom was truly at peace on her passing and that's what she would of wanted.

When my MIL was in the last stage of lung cancer, we had had her at our place for almost a year. When it was obvious that she was not improving, we moved her to another son's house that was in town (we lived in a rural area) and her oncologist arranged in-home hospice. A visiting nurse came by twice a week and checked on her, and about three weeks in, the nurse called her doctor to request a stronger pain medication, and they called me to go by the doctor's office and pick it up, as it was something that could not be prescribed by phone and he knew me. So I took the day off and took the medication to them, and it did appear to make her more comfortable. While I was there, I volunteered to take a "night shift"; her daughters and DIL were each spending a night with her because she had been not sleeping well for some time, and would spend the night calling out in prayer for mercy to die, and I'd had a break from this. As it happened, this was her last night; she was talking with her deceased mother and sister, and slipped away early in the morning.

If you're not okay with it, it is *fine* to review the decision to admit your mother to hospice care; and don't let anybody bully you.

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.

Six years in 24/7/365. Spector ordered Hosice last week. First time a doctor gave me a timeline for passing. I am brokenhearted and extremely sad. Married for 58 years and now am facing the deadline. Hospice has been every day for almost. They are great and bottom line. I need them

Hospice is a blessing for those lingering at the end and those caring and loving the sick person. Both of my parents passed with hospice. For the weeks that Dad was on hospice we had quality time with him. He was kept alert but not anxious and slipped away quietly with us at his side as well as a priest. Allow your Mom to have this comfort. Modern medicine keeps us alive too long. Take advantage of whatever relief is available for Mom. I now have hospice for my husband with advanced Parkinsons. They are keeping me from having a breakdown and making him comfortable. Back in the day before antibiotics they used to say that pnuemonia was an old mans friend. It still can be, without struggle or pain. Personally I think it a gift we can offer.

My MIL passed away in 2017 from cancer and a brain tumor. I am thankful for hospice and their guidance. But everyone is different. You should follow what your mom wants. That’s what we did and I will do for my mom. What does she want for eol? Does she want “heroic means” or DNR? Does she have a health care directive? Have you talked to her about this? My opinion.....her life her decision. It’s all about her and what she wants.

Kathycare

Have u come to a decision?

The best you can do for your mom is what is best for her. We can prolong life because of the guilt or need not to let go. The best thing to think about is the quality of life. Would blood work or medication improve her quality or just allow her to suffer more, deteriorate more? Hospice is a wonderful avenue as they specialize in comfort and help families through life's stages. Hospice can be a wonderful thing for the sick and dying. They are of psychological and physical benefit. There comes a time in life where there is no cure, no miracle. When that time comes we can either make the decision to be aggressive in treatment with no true benefit except to keep them alive to suffer more or we can take the route of putting our own need of not letting go aside and allow them comfort. We all need to have hope but also need to be realistic to the effects and events of our decisions. They are not easy decisions to make. My dad begged me not to allow him to suffer or be a vegetable. He told me if he did not have his life's quality he would not want to survive just to survive. If your mom is capable perhaps it would be a wonderful thing for you and her to allow her to make that decision. My dad left this life without pain and in comfort. He made his decision in the end refusing to eat and I, with difficulty, recalled his words to me and did not take the route of a feeding tube. I supported his wish as difficult as it was. He did have a living will and I supported his decisions. Does your mom have a living will? If she does, follow her wishes because that is something you can live with and accept. My dad eased into a coma and left this world in peace. I did not have to watch him gasp for breath or scream in pain. His death was peaceful and almost angelic. Yes, hospice is a wonderful thing but before you make that decision you have to decide if your decision is for you or for the wishes of your mom. No decision is a bad decision but the one that lets them suffer less is the best decision. Prayers are with you!

My mom fired hospice 5 years ago.

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

When Dad fell and broke his hip, that's when I was first asked about DNRs and last wishes. I vehemently argued that Dad should agree to have CPR if need be; He was 90 years old at the time and also had a brain tumor. He was against it, but reluctantly agreed just to pacify me. His doctor took me aside. She explained the reality of administering CPR to a frail old man and how hard it would be on his body. They would probably break bones in the process and cause lots of discomfort and pain. I never realized that. My only goal was to keep my father alive at any cost. After speaking with the doctor I had to re-evaluate my thought process on taking heroic Measures to save someone's life at an advanced age. We went ahead and Dad sign the DNR. When the brain tumor grew and no hope was left, hospice was called in. Dad was going to die, no matter what, so my only goal at that point was to keep him comfortable. Hospice was wonderful. I talked through my fears with them and they assured me that I would be in charge of making decisions about his care. By the grace of God, dad only lasted for two weeks and died peacefully in the middle of the night. I can't say enough good things about hospice and the level of care they provided for him and for my mom and the rest of the family. What we did was the right thing, the Humane thing, the kind thing. Try not to look at hospice as being immoral, but as a way to ease your loved one's transition to the other side.
Sending you a big hug tonight, my friend.

I understand that hospice was called, but what are her wishes for EOL?

It depends on the person, what I say may seem harsh to some people.

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.

My mother has hospice care and we have the best team of people. They go above and beyond to help us. My m does have an advance directive saying do not resuscitate. They've never suggested that we take her off of her meds and not treat her. I would abide by her wish to not be resuscitated.

Being that you are uncomfortable with what you are hearing/seeing about hospice, I would investigate the possibility of palliative care.

Hospice is meant for when her health is declining and expected to die within 6 months. If she recovered from her pneumonia it doesn’t look like she is dying yet. I just went through this, my mother died 3/2/19. I didn’t know she was dying and they told me at the nursing home she’s been dying for 3 months! My mother did not improve and kept getting worse. I think you should bide more time and watch how she is doing..if she gets to the point where she is not eating, constantly agitated, like tossing back and forth all the time and seeing the signs of death, which I googled... then bring her to hospice. But I would not right now.

The criterion for hospice care is that the patient's current life expectancy is fewer than 6 months because their condition is deemed incurable. If a patient (or family) agrees to hospice, it is with the understanding that "comfort care" only will be provided. Because the condition is deemed incurable, that condition will NOT be treated aggressively - since there would be no point in doing so. For example, chemotherapy would be stopped for a cancer patient.

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.

I have been facing it with my wife since 2006. We have had her enrolled with 3 different hospices. I detest hospice for many reasons other than the propensity for assisted suicide. Every hospice and even agency's that I interviewed gave me grief instead of comforting my grieving.

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.

There is typically, in this money-hungry age, more than one hospice in a town. I'm guessing you have POA? So you can consult with another. You can take her out of hospice and put her in another program. The point always is the comfort of the patient, the desire to do what THE PATIENT would want, and always in their best interests. Pneumonia could be detected in other ways beyond blood work I would think. Setting a broken bone...I would think that would go a long way toward pain control.
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.

I would ask the hospice care management what their reasons for the no assistance recommendations. What changed? Is there a specific reason for their recommendation. Is there something they found that is terminal?  Why are they recommending such severe action.

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.

Every situation is unique, but for our family, putting my father-in-law on hospice was a great decision. We were surprised when his memory care facility suggested it, since he was not near death. It was explained to us if a patient has a medical condition which will eventually lead to death and he is not going to get better, he is eligible for hospice. In my father-in-law’s case, it was dementia. The hospice we used was wonderful. A nurse came in to evaluate him at least once every week and kept us informed. She ordered what ever she thought he needed to keep him more comfortable and Medicare paid for it all. This included a hospital bed, wheelchair pads, Depends, a Hoyer lift, etc. In addition, an aide came in 3 times a week to care for him and just give him added attention. In addition, they had a social worker and chaplain that were available to him and us. At the time of death, they were wonderful. They let us know when it was time to bring in the family, and had an aide sit with him 24-7 until family came and stayed close when we arrived. They made the arrangements for the funeral home to come in and pick up the body, and several of them even came to the funeral.
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.

Rather than see reduction those blood tests as potential neglect try to see it as they will no longer be poking her with needles just to chart numbers that won't change the fact she is slipping away slowly

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

My Father was put on hospice 7 years ago with CHF, COPD, numerous bypasses & more. We all thought that was it! Hospice actually helped by monitoring him, paying for his medical supplies & Rxs, bathing him, changing his bedding. I moved him in with my family when my Mom passed in 2014. I started regulating his medication & he is now discharged from Hospice.
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.

oh my gosh, I woke up to see your question, and I had to look twice that I didn't write it myself and forgot!
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.

Kathy like you I recently agreed to place my soon to be 92 year old dad in hospice... Totally regretting and rethinking it all. He was placed, I was told (by the Hospitalist) due to his Congestive Heart Failure (CHF), narrowing of his aortic valve and overall worsening of his heart. He had to have an above the knee amputation due to Peripheral Vascular Disease. Unfortunately because of his heart be began having issues during rehab...getting tired. This is a man that looked to be in his 70's, no assistive walking devices, no oxygen...nothing! Get him home and begin seeing what hospice was about. They had him in for COPD (not CHF) He ran out of the small bottle of liquid morphine after a week..only to suffer for two days only on Tylenol and Motrin until they could order again! The nurse comes once a week, barely takes his vitals and was not checking his stump (surgery end of March). I with healthcare knowledge (Thank God!) had to tell her it was showing signs of INFECTION! It took 4 days for someone to finally see him (as it began worsening) and me basically demanding an antibiotic!!! I was told the Medical Director didn't want to give him the Antibiotic...REALLY??? So, he's suppose to die of Sepsis from his amputation??? Only then did I speak with others and find out what Kathy said...no matter what they just basically don't treat them, but allow them to DIE from whatever... Btw, they'd taken him off his heart meds, which I restarted! It's really sad. However, as dad's stump continues to heal (I do all the dressings and keep steri-strips on it), I will soon be removing him from hospice and having him in a pain management program for the phantom leg pain and followed by his own Primary provider and Specialists... Home Healthcare can provide the bed and oxygen. Very disappointed and feel this HOSPICE company to be a Medicare Rip Off in my dad's case 😡 Kathy, you are not alone... You must be the ADVOCATE for your Loved ones...

Hi. I’m sorry you have to go through this. Well, you already have a lot of answers but here’s my two cents.

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!