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

I am sorry you’re going through this. It does not sound moral for life preservers to give up at this point. What does the DNR order say? A portion of it is below. If you want to change it and you have the POA for her health, do so.

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.

A few years ago, I read that each Hospice facility can be different in terms of what they allow. This shocked me. For example, some hospice facilities will allow a patient to stay on chemo, others won't. I'd investigate the specifics of the facilities that you're thinking of, before making any decisions. I'd also ask those same questions about hospice care at home. Best of luck.

Hospice means a withdrawal of (most) medical treatment but it does not mean the end of care. You and the hospice staff will now care for your mom in a different way, a way that ensures comfort and freedom from pain, but not an artificial prolongation of life. Drugs, surgeries, etc. are artificial means of prolonging life, however customary they have become. So please don't feel you are 'murdering' your mother or assisting in her suicide. I too have had your moral question: am I "playing God" if I decide to refuse all life-prolonging treatment? I still don't have an absolute answer to that question for myself, there are many questions I don't have perfect answers to. I say to myself, we 'play God,' in a sense, whenever we take an antibiotic instead of leaving the consequences of illness to Mother Nature. We intervene in outcomes all the time. I once discussed these issues with a Jesuit medical ethicist who agreed that even to stop all testing, all meds, all treatment of a person with advanced dementia was within the bounds of Catholic ethics. (Just as it would bea ethical to continue all treatment.) You gave her all the medical treatment she needed when these could help her quality of life; now these probably won't do that. I hope you'll have peace knowing all you have done for your mother. If you choose now to sit with her, sing to her, pray with her, hold her hand, instead of authorizing more tests and meds, maybe you're giving her a greater kind of care.

My dad is in hospice care and has had several UTI, which I always have treated. Can't imagine them not treating the pneumonia, just to keep her comfortable! He is dying from congestive heart failure, near kidney failure, and related age dementia. He is legally blind and almost deaf. If his pacemaker fails, it's over, and heart doctor says it won't keep him alive anyway. His overall health is so bad, what is the point of it all?
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?

I am 100% for assisted suicide, because I wouldn’t want to prolong my life in bed. That’s not living; that’s existing. I want to choose when and how I end my life.

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.

You can opt in and out of hospice. Sounds like she’s in it a little too soon
when I used hospice treating my father I didn’t allow morphine until
his end stage (final week).
as long as your Mom is comfortable and happy don’t push to end her life.
hospice keeps you out of the hospital.

Oh boy! This sounds like when I called in Hospice too soon. I didn't really realize the full implications of what being on Hospice meant; but, I soon found out. Mom started throwing up blood & was in acute pain. I wanted to take her to the ER but in order to do so, I needed to revoke Hospice, which I soon found out was much easier said than done,

The staff told me I couldn't just write out a document stating I wanted to take Mom off Hospice. I would have to wait until the Hospice nurse arrived with the documents. I was told it would take at least 45 minutes for the Hospice nurse to arrive & the ER would not see Mom until those documents were signed.

I'd been told when I signed Mom up that it wasn't a big deal to revoke Hospice. That turned out to be blatantly untrue.

When the Hospice nurse arrived, she went into the nurse's station to review Mom's medical file then she came into Mom's room & examined her. She offered to give Mom morphine, which shocked me because Mom is allergic to morphine. This told me the Hospice nurse hadn't read Mom's file very thoroughly. She also said she could give her an enema to relieve her belly pain. She also said they could get an X-Ray of Mom's abdomen; but, they didn't have a contract with the hospital where Mom was staying (there was an extended care/skilled nursing floor) so it would take another hour or so until their mobile X-Ray technician would be able to come. I was so thoroughly pissed that I told the Hospice nurse I want to sign the papers NOW. That's when she informed me that she had to go down to her car to get them. She knew I wanted to revoke Hospice & yet she hadn't brought the papers upstairs with her. What should have only taken 10 minutes at most took 45 minutes. In the meantime I get a call from the Hospice administrator who tried to change my mind. NO WAY! So, I knew what had taken the nurse so long to get the documents.

Even after I signed the documents, it took another 45 minutes or more to get the information into the system so the doctors in the ER would treat her.

Mom ended up getting a transfusion, medicine to stop the bleeding that was from the effects of the gastric reflux.

Long story - short version. Mom lived for nearly another year & a half during which time she had many good days. If I hadn't revoked Hospice she would basically been allowed to bleed out & even with pain medications might have suffered. I can't say for certain. It was a hard lesson to learn.

So, I hope this has been helpful to you.

I did put Mom back on Hospice about 10 days before she did die. She had quit taking her medication & had stopped eating anything. It was time. In fact the staff called a meeting to let me know I needed to call in Hospice. It was the same company but different individuals who were wonderful.

Just understand Hospice is big business & not Hospices are equal. Some provide wonderful care & some only the bare minimum. My sister's neighbor's mother was dying & they sent in someone to give her massages, to play the guitar & sing to her, etc. The Hospice my deceased fiance's son brought in were horrible & did nothing to educate his family about what they could do for him. It was only when I was able to come up that I told them about sponges that would moisten his mouth, eye drops that would keep his eyelashes from gumming up, lip balm for his lips, ice chips when he could swallow but was thirsty, etc. I was appalled. I don't think his family realized he could be saved & by the time I was able to come up to see him (I had to arrange care for my mother since I was taking care of her at home at the time) it was far too late.

Let us know what you decide.

You are not wrong. There appears to be a move to put more and more people on hospice. But hospice does no life-extending care (by definition). No matter what the medical experts say, make your own decision. The medical community has their own agenda. A friend of mine's aunt (on hospice for a breast tumor) broke her leg bone with just walking on it. She had to be taken off hospice to fix her leg then put back on. My sister (73) paralyzed on one side in a nursing home from a stroke was advised to go on hospice but she is not terminal at all. We turned it down. A friend of mine's mother (82) decided to not have an operation on a fast growing abdomen tumor. The doctor put her on hospice. She is going to die from a bowel blockage. The determination for hospice no longer appears to be a terminal condition, but a quality of life decision coupled with a financial decision as nursing homes costs an huge amount of money. My sister gets almost no care. Left in bed for over 3 months now. They never get her up because she gets uncomfortable in the wheel chair. In diapers even though she has bladder control. Fed peanut and jelly sandwiches all the time because she can feed herself with that. It is hard for nurse's aids to remain caring.

You have the right to take her off hospice care if you feel it is wrong for your mother. Do you have a religious leader you trust enough to talk to about this?  He or she might be able to help you with the "allowing nature to take its' course" vs "assisted suicide". I know pneumonia is what actually causes the death of many elderly and was in fact, the final diagnosis for my own mom. But I would have a problem with not setting a limb, especially if she was able to walk or use that limb prior to the break. Do you know what you mother would want? My mom didn't want anything invasive or heroic, and she and I had many conversations about that so I felt comfortable with my choices for her. Fortunately her personal physician was willing to provide care for her right up to the end and I chose NOT to have hospice involved, even though I know many people benefit from it.

NeedHelpWithMom...As long as the person is still Hospice eligible it is as easy as the first time. They will probably do an assessment again but chances are your Loved One has not improved that much that it would keep them off. And if it was a trip to the hospital for a broken bone most likely they are even more frail than the first time.
You can still seek treatment just not for the condition that made them Hospice eligible to begin with. For example Hospice WILL treat an infection but if your "life limiting condition" is cancer you can not seek treatment for the cancer.

While on Hospice you can decide what course of action is taken.
If she is on Hospice and falls and breaks a bone..you can suspend Hospice and a trip to the ER and put her though surgery and rehab..then go back on Hospice. Thing is many do not do well in surgery and most certainly do not do well in rehab.
If she gets pneumonia you can again suspend Hospice and take her to the hospital for treatment.
(Then again what type of pneumonia is/was it? Aspiration pneumonia is different than other pneumonia's. For Aspiration pneumonia thickened liquids can help prevent it)
As far as medications go Hospice has standard medications that they will provide. If you wish to continue other medications that they do not provide you can pay for those medications.
The reason a hospital stay is not normally done is if Hospice is billing Medicare the Hospital can not bill Medicare so if a hospital stay is needed Hospice is suspended.

And final thought Hospice is not mandatory and once you sign on for Hospice you can change your mind at any time.

My neighbor, and fellow caregiver, had same situation with her mom and COPD. The relatives (siblings) who had nothing to do with her day to day care in the home, wanted to go with the 'experts', move on to hospice, and withhold all curative procedures (regular medicine, tests, etc). One of the relatives is a nurse and others in the family go with her word must be the gospel. Based on care she provided to her own family members, she is one who believes when an old person gets sick, it's time to let them pass. My neighbor felt strongly about giving her mom every opportunity to recover again with the exclusion of compressions to get her breathing again if that situation arose.
Once again, her mom was rebounding so she talked to the dr at the hospice about leaving her meds and occasional testing in her medical care. Her mom did better and was no longer eligible for hospice care and she returned home.
My neighbor had seen her mom go from death's door to remarkable recovery so many times in the past, her decision to help her recover again paid off. Several times when her mom is doing well, they have had the conversation to ensure she understands how far she wants to go to recover and each time her mom says she wants every opportunity to get well, but doesn't want heroic efforts in the way of compressions to the chest if she were to stop breathing. She is even ok with ventilator to help give time to recover. She does want to live.
Yes, COPD will probably take her life at some point, but she has been at end stage for many years now. She has problems from time to time that may look bleak, but she has also bounced back better than before after drs and family said this is it - let her go. The primary caregiver knows her better than anyone, can identify on a daily basis something not quite right, and should listen to others as part of the conversation BUT go with their gut on the actual decisions for the care.

Saving someone’s life is different than keeping someone alive. Even though we may be prepared, we are never ready to let go of a loved one.

I recently went through this as my mom had stopped eating and losing weight by the day. But the drs put her in rehab and it almost killed her. I had gone as far as preparing myself and my brother that this could be the end. We brought her home resolving that she would never go into a nursing home or rehab again.

She is still with us. We have a long way to go to address her current health issues (drs are pushing surgery), but I am thankful to have her around for what may be her last Mother’s Day.

Go with what your GUT and your mind and your heart is telling you. What is right for your family? That is what matters. What is right for your MOM?

Hospice and hospitals... They see things differently..

In order for mom to be treated in hospital, I had to release her from hospice, and if I didn't want life sustaining treatments, then I had to sign her back to hospice and then they could have put her in a transitional floor in hospital, but things got botched up, and they told me she had to go back to AL home... And then a couple days later, she was liberated from her body. Yes, I am still dealing with all this emotionally.... It has been a year... It is still hard, and I need to get through this so I can keep going for my family here on Earth. And I certainly do talk to my loved ones in Heaven, and yes, I do feel they hear me and answer me... :) And laugh at me sometimes.

It is okay. The circle of life... It is so hard, and yet, if the quality of life is depleting, the you know it is time not to fight for quantity of life. Quality of life is what you need.

If quality is not there, then why the quantity of it?

If you saw mom's last years of life in her photos,,,,, you know the quality was not there.. She looked lost, confused, scared, and confused. It was not good.

I do so miss her, very much. She stopped talking three years before she passed away. She did recognize me and smiled, but no verbal contact...

Yes, this is going to happen, your parent will soon pass. My brother died before she did, and I didn't mention it to her since I wasn't sure if she would understand in any way what I was saying... You just don't know... Kinda thought my brother would swoop down spiritually and whisk her away to Heaven, but it didn't happen that way. I guess she knew I wasn't ready to let her go. Still am crying.
An old friend to me: : Death is okay. It's about the only way people leave Earth.

He was right.

How about Palliative Care?

MOm graduated from Hospice twice. Third time she went to Heaven

Hospice is voluntary. Whoever has POA should remove her from hospice if they feel she should have full medical care and not end life intervention.

I was also told that pain relief was the first priority in hospice...but quality of life is important too. POS should Talk to hospice and tell them that any emergency issues like broken bones will be handled in ER should it happen.

This is a difficult decision you face no doubt. I have a childhood friend, an RN, whose hubby is Md.
Their mom, wanted "everything done" to maintain life. At 96 that poses some ethical probs for them.

What trauma would they put her through to do so. Last week, at same time we were making decision for our mom, they made same for theirs.

You do a resuscitate on older peeps, you will break their ribs. I am not putting my mom through that.

Some great responses for you here. I would agree with you to talk with your mother and perhaps be prepared with many different ways to ask the same question to truly ascertain what she may want. I've been through hospice with 2 family members so far, both very different but still what was needed.

My stepmother went on hospice after she started refusing food, drink, NG tube and IVs while in the hospital for pneumonia and UTI. She was unable to speak due to strokes. Pretty much just bedbound. I used a lot of yes and no questions stated differently over the course of 3 hours to make sure hospice and being ready to die was truly what she wanted. She was on hospice for 9 months before she passed. There really wasn't any quality of life left for her. She spent all her time laying in bed in a nursing home not able to do anything. The passing was peaceful.

My MIL just passed away while on hospice a few weeks ago. In her case, it was her decision as stage 4 colorectal cancer was progressing rapidly. Chemo would have only given her maybe another miserable couple of weeks. The docs wanted to keep draining fluid out of her abdomen and she said "What for? It doesn't change the outcome." She passed away after 2 weeks surrounded by family and close friends and was able to say her goodbyes to dozens of people in that time. She was a woman of faith and was ready for the good Lord to take her home on his time.

Everything will really come down to if your mom can articulate what she wants. If she is unable, then whoever is legally in charge of her medical care will have to start making some decisions. Hopefully speaking with your mom will clear up some of these things. Many hugs!!

I think you got some great advice here. I am sure your head is spinning with so many questions and with so much information.

As NYDaughter stated "there is no such thing as a 'touch of pneumonia' in the elderly." Pneumonia is deadly to children and seniors for a reason and the reason is because their immune system is not strong enough to fight the bacteria off. And your mom has poor circulation because of the CHF, which it makes it difficult to get oxygenated blood through her body. In fact, your mom's heart is beating harder to pump the oxygenated blood through her body. I am sure her lungs have been damage by the COPD, which it is probably making it harder for her to take in oxygen. Not to mention the pain she may be in. Does this mean the end?

What does your mom want? Do you feel that she has more fight in her? Does she want to fight?

Here is a thought, you could have mom take antibiotics for 7 days if that is what she wants! If she could have quality of life. If she gettes a litter better then go from there. However, your mom will still be ill with CHF & COPD. Giving her antibiotics will only give her a little tiny bit of time. I hope you understand what I am telling you. Just take one step at a time.

You will never feel comfortable with the idea of Hospices. No one really does! Hospice is for the "end of life care." Hospice is a gift to give our LO. It was the best thing that my mother and I could do for my dad. He had cancer and he got to go peacefully thanks to Hospice.

I am sorry that you are going through this.

Just remember we are all owe a death and think about what is best for your mom as I am sure you are. We use Hospice to show our LO that we love them so much that we don't want them to suffer. Take your time and think things through.


Hugs!!!

Op I forgot something. We told hospice not to use term hospice. They came up with " we are a private nursing staff your daughters wanted for you"-- that is why aide is successful when staff of MC is not.

My mom thinks she is bees knees. And that's ok.

The real question is what is her prognosis?

Is there any chance that she will improve or is it a downward spiral?

My 52 year old sister went on hospice with the intention of getting better and going home. She was never doped up, she could refuse any and all medications on a daily bases. We were also informed that at any point she wanted to pursue medical treatment she could call 911 and be transported to the hospital and released from hospice.

She died, but hospice didn't kill her. The cancer that was all through her body did. She was well cared for during her final weeks and always in complete control.

If you feel like you are not in agreement with the hospices plan then interview others, you have that right.

I would think that a family member should be present to ensure that she is not being administered drugs she doesn't want.

This is a very hard time for anyone, please talk to someone that can help you understand that hospice doesn't murder people. I would personally feel tortured if someone was taking blood from me every day, it is traumatic every time I have to be stuck with a needle.

Hugs!

Op, many people wait until loved one is in active dying phase. And their experiences are shaped by.

Dont wait til that point. My HR director waited until her mom had two weeks. Do it MUCH sooner than that.

When people are bedfast or can't speak, you don't they are not in pain. When you can't reposition yourself due to dementia, you remain in one position. And you hurt. You may develop bed sores. And when you have arthritis, you hurt. And when You cant move, you hurt more.

Our hospice aide makes sure our mom in clean clothes. Our mom no longer will take a bath and it is a spa bath, something she loves. But the aide can convince to take shower if not daily, every other day. Washes and dries hair. Puts lotion on.

My sib and I are thrilled. Relieved. Thankful. So thankful.

Do you realize pneumonia causes the symtoms you described. If you don't think she is ready for Hospice then take her off. Let her get stronger and the pneumonia cleared up. Then make ur decision. Mom will get worse with her problems. There will come a time when you will knowc "its time". She will need the comfort that Hospice gives, it just not be now.

Op, one more thing articulated to me by my mom, some 5 years ago. They are not afraid of dying. They are afraid of the process. Hospice takes that fear away.

Take care of yourself.

You have named 3 co morbidities in dementia. Look up the FAST test used in hospice.

I get where you are. We put our mom on hospice last week. She is getting more care and more services. Death is a part of life.
I know you know this. It is hard. But for us, it was the right thing to do.

Hard because it was realizing we are nearing an end. But it helps us not feel so helpless. When that end is, not sure. But less than 6 mos. Way less.

Our mom would not want this way of living for herself. Hospitalizing can be traumatic, increase dementia symptoms, increase their exposure to other things.

Maybe talk to several hospices. Look up obits in your major daily papers and see who most frequently used.

No one is going to be Lazarus. But coming to terms with that reality is hard.

FAST is Functional ASSESSMENT STAGING TEST.

Putting our mom on hospice was a good direction for us. Best to you.

ETA. Our mom has a DNR, DNI, NO FEEDING TUBE advanced directive. No meds will be administered until necessary. They get to point where they cannot articulate they are in pain. Our mom has severely declined in last 3 week's. No longer able to walk. Self transfer. Is now bowel and bladder incontinent. Stopped eating and drinking. Stopped speaking. Our mom is 93. Has CHD, HPN. I asked oxygen be given. I don't want her struggling to breathe. She has a nurse see her almost daily, an aide too. Dr. Sees weekly. Chaplain too.
She has a wonderful team. And we get phone calls each time with eyes on observations.

We are very pleased.

Your mother is very ill. She has congestive heart failure. CHF alone can cause her pain in her chest, coughing that can be draining and painful, total body fatigue because she's not getting enough oxygenated blood, difficulty breathing especially at night or when lying down and so her sleep is not good quality sleep anymore, and probably other symptoms that would be difficult for her to manage even without dementia and COPD.

Does she have any fight left in her? Are you looking at it from a quality of life or quantity of life perspective? Intensive medical care is about quantity of life. Palliative care and hospice are about quality of life. Neither is immoral. Giving someone a good death, which is the actual (and unpoliticized) definition of euthanasia, is kind and humane.

And in frail elderly, there is no such thing as a "touch of pneumonia". Pneumonia is very serious and it is adding to her frailty. If you are part of a religious congregation, perhaps share your concerns with a trusted spiritual advisor.

I am not an expert on hospice care. My brother received hospice care and we were pleased in every way. He was dying from HepC and there was no chance of recovery. They made sure he was comfortable in his last days. The social worker was a big help for the family along with the chaplain.

Awhile back I did attend an ‘end of life’ seminar at my church. The primary topic was hospice. It was stressed that not all hospice programs are the same. Some are better than others.

The other topic that was discussed was to have a living will in place so there would not be any issues as far as what the patient truly desires. Also HIPPA laws will prevent families from making decisions. The patient has to make these choices while they are able to.

Does anyone in your family have medical power power of attorney to decide in case your mom isn’t able to make those decisions?

I would check into other hospice companies if you still want to be a part of hospice or check into palliative care as well. The other option is to drop hospice for the time being, but do find out if and when it could be picked up again and if it is easy for her to rejoin because you want her to be comfortable when her time comes that she needs assistance.

Hospice nurses are pretty good at seeing signs. They were dead on with my brother. I thought maybe he was going to live a bit longer and they kept saying that he was near death and indeed he did die shortly after they predicted.

I do think you are doing the right thing by not agreeing to something that you are not comfortable with. I’d question it too.

It’s so hard to deal with all of this. I wish you the best. Hugs!

Are you able to discuss preferred end of life treatment with your mom?  It sounds like hospice may be premature - how does she feel about this?  What qualifies as basic medical treatment could differ very much person to person - setting a child's broken leg would be obvious, but with a person very close to death might be just a lot of pain and trouble for no real benefit.  My grandmother developed pneumonia in the last stages of lung cancer.  The only point of treating the pneumonia would have been to prolong her agony - basically to torture her.  How is that moral?