Just need thoughts. There really aren't other options. My mom has stage 4 rectal cancer, heart failure, and delirium, among other things. This most recent hospitalization they brought her in with septic shock, care home did not keep her clean and uti got out of control. She is on meds to keep her bp up, and on a feeding tube. She's on morphine, a fentanyl patch and zyprexa and STILL full of fight. I am scared that if I agree to hospice she will be gone within hours after they stop her bp meds and feeding. That they'll just up the pain meds till she's gone. They got me to sign a DNR last week, that was difficult enough. Now they want a hospice decision and I feel like I'm being rushed into it...I don't feel she's ready to go yet....

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Ask yourself if YOU would want to live like this? Would you want your life extended in THIS condition, with a feeding tube, septic shock, late stage rectal cancer, etc? If the answer is no, please call hospice in.

Your mother's heart will stop when IT is ready to stop, not 'within hours' if she is still full of fight. Hospice is not in the business of 'euthanasia', but keeping people comfortable and out of pain when they're at the end of their journey here on Earth. That can take months to actually happen, in reality.

Remember, this isn't about 'you' but about keeping your mother comfortable and out of pain. Nobody is ever ready to say goodbye to a loved one, but sometimes it's the only thing we CAN do. I called in hospice for my father when his brain tumor was making his life unbearable; I'm very glad I did b/c his final 19 days here on Earth were pain free with no agitation or fear. I thank God for hospice every day.

Wishing you the best of luck during a difficult time.
Helpful Answer (19)

If you feel she isn't ready to go (and are certain that isn't FEAR and DELIRIUM as you describe) then you cannot ask hospice to come in. When you get hospice it is necessary that you recognize that this lady is at the end of her life. To be frank with you, with stage 4 rectal it is excruciatingly painful, and why anyone would want to prolong this torment is quite beyond my understanding as a nurse, but that is neither here nor there as this is YOUR decision, and you claim she is not ready to go. I would ask you if you have discussed her wishes with her. Have you ASKED her directly does she wish to go on like this when in fact she is in the last stages of rectal cancer. I shudder to think you are mistaking her delirium and fear for being "not ready to go yet". Cancer doesn't honestly care whether we are ready or not.
As you say, you are in charge. Please discuss with MDs and with Hospice itself. But you do understand that yes, a tube feeding would be likely removed. BP meds may be kept. Those things that contribute to prolonging life will not be kept. Those things that contribute to comfort will be kept and you can speak with hospice about what will be kept. She is on fentanyl. That is the last line of what there is to keep her pain at bay.
That you signed the DNR is a good thing. Why in the world bring someone back from the peace of death to be tortured longer? There is no end-game that is good. She will NOT be cured. She will die, either quicker and with less pain or more prolonged, with more torment and torture. I am afraid that is the truth in this matter.
As I said, Cancer in its last stages could not care less whether we or our loved ones are ready for us to go. Please thing as much as you can of the kindest and most comfortable thing you can do for this person you care for, and who you wish to honor the wishes of.
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XenaJada Apr 2021
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Where do people get the idea that hospice is essentially pulling the plug??

They aren't going to stop her BP meds, nor will they stop feeding her. What they will do is treat her issues where she is without taking her to the hospital or doing anything above and beyond comfort care. If you want her to go to the hospital for something, she's taken off hospice for that time, then she can go back on afterward.

I put my mom on hospice in January because she'd been in the hospital for two weeks with sepsis, also had delirium to go with her dementia, and I wasn't going to put her through that again. Since then, she's had Covid (which was treated), pressure sores (treated), and more wound care (treated). She continues to get the medications she took before she went on hospice. She doesn't eat by choice, but she gets Ensure daily and is offered food at every meal. She is in no pain, and if she developed it, the eradication of pain would be the primary goal. Her comfort is the main purpose of her care now, and what no one does is seek to cure what can't be cured, namely, old age and its accompanying decline.

You need to decide if you want your mom's life to be quality or quantity. Modern medical science can keep a body going indefinitely, but to what end? Do you want your mom's remaining days to be full of delirium and doctors poking and prodding her, or do you want her to be as comfortable as possible in familiar surroundings? She may very well last a long time under the lower stress of hospice care.
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Invisible Apr 2021
Your answer here has helped me define what bothered me the most about the way my father died. He was in a nursing home for rehab (after minor UTI) but they had already decided he wasn't able to participate and were discharging him earlier than I wanted. I had to move him from his current MC to a different one that could provide more mobility/food prep assistance but the place wouldn't be ready for 2 days. I believe he had a stroke at that time, although no one at the nursing home identified it as such and to the best of my knowledge, no doctor saw him. He had been declining gradually in his ability to feed himself but now was completely incapable of getting food to his mouth and shaking. Still he went to the dining room and tried. They didn't push food or liquids after that for fear of aspiration. Instead they put him to bed, shut the curtains and turned off the lights. The next day they said he wasn't interested in eating. They had put out swabs but I don't know that anyone used them but me. His lips were chapped. He was tired but cognizant. He smiled and talked with me. The next morning I got a call that his breathing had changed and I needed to make an immediate decision on hospital or hospice. Hospice meant no more food or water but they would give him morphine to "ease the breathing". This was Sunday; hospice nurse would not arrive until Monday morning. He passed away about 15 minutes before she arrived. I keep wondering what I should have done.
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I can’t imagine not wanting hospice at this point in your mom’s life.

Too many people wait until the very end to get hospice which is incredibly sad to me.

Why would anyone want to suffer needlessly?

Hospice is comfort care to allow a person to die with dignity and free from pain.

That’s how I would want to go if I were in your mom’s situation. I would never want a slow and agonizing death.

I hope that you will take advantage of hospice as the hospital is recommending so your mom will be as comfortable as she possibly can be.

My mom has end stage Parkinson’s disease and is under hospice care. I wouldn’t want it any other way.

Mom is going to die. I want the time that she has to be comfortable. That is what is most important to me, not to stretch out the number of days, besides hospice does not hasten death.

People die because they have incurable diseases.
Helpful Answer (14)

Hospice will not stop morphine or the patch that is being used for pain.
Hospice will not have the feeding tube removed. (Hospice will not have a feeding tube put in but if it is there when the patient goes on Hospice it can remain)
Think of Hospice as having another medical team helping you and mom.
Is mom aware of what is going on? If so have her part of the discussion when Hospice is explained. Just like any other doctor having a conversation with you and her together,
The goal of Hospice is to help care for someone that is reaching the end of their life, when no other treatments are going to improve the quality of life.,
Part of that goal is to make the patient comfortable NOT in a stupor. If part of that is increasing medication that is what they will recommend. But if you are administering medication YOU get to decide (within reason) how much and when. Yes there is a dosage that is prescribed and there is a time schedule but it can vary. But I am sure you do not want your mom in pain either.
And if you wish mom to be brought to your house Hospice can arrange that, they will have the bed and all the equipment that you will need and they will arrange transportation to your house.
Lastly If you do not feel comfortable with Hospice after even a few days you can drop Hospice and continue with her previous medical team.

I had a very positive experience with Hospice, my Husband was on Hospice for almost 3 years. I would not have been able to care for him the way I was able if it had not been for Hospice.
There are basically 2 types. FOR profit and NOT for profit. The one I happened to select was a NOT for profit. I suggest you interview several Hospice just like you would interview or research any medical provider .
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disgustedtoo Apr 2021
What Grandma1954 said! They won't allow a feeding tube to be put in, but they won't have it removed unless you or your mother ask for that (IF it came down to stopping the feeding, it's easier to just stop using it, rather than removing it.)

When we finally could get Hospice on board (denied TWICE!), there were NO narcotics used until after the second stroke, which really did a job on my mother. They checked on her, would help or make suggestions, they were a support for family, they provided supplies and medical equipment.

Everything they can/will do for you and your mother is up to the two of you AND highly dependent on how well she can fight off the sepsis. Even if she improves and can go back to where she was living before, she can remain on hospice, just in case - until they (or you) deem her no longer needing their services.

See how her current treatment goes. Bring Hospice in at least for the support they give. YOU and your mother, if she's capable, decide what she should get for treatment. If she wants to continue, go for it. Worst case is nothing works, but at least it was tried. Best case, she bounces back... But I would try to keep her on Hospice because she will eventually need it, with stage 4 cancer. Better to have it and not need it, than need it and not have it!
I'm so sorry for this distress! Please try remember that you are making the decision on her behalf -- in *her* best interests, not yours. Your poor mom is suffering. No one knows for how much longer. Hospice is for her comfort and she is currently suffering. Would you want your life prolonged if you were suffering? I'm not trying to pressure or guilt you, just want you to walk through logic and reason, separate from your emotions (which is totally difficult right now). When you say, "I dont feel shes ready to go yet...." perhaps you mean you're not ready to let her go? This is absolutely you have to put on your "Mom's hat" and make the decision you think she'd want for herself. Also, you may be surprised that she may do "better" on hospice and not slip away as fast as you think. No one can know for sure. I wish you much peace in your heart no matter what you decide for her.
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Kanina Apr 2021
My mom was released on hospice with only her eliquis. Within three days she made a remarkable turnabout, went on Skilled Nursing and 9 days later fell and broke her hip. I really believe medications (especially Fentanyl) make some seniors worse.
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Most people wait too long before they bring hospice in. It sounds like your mom is beyond ready for their care. Just because she's under their care doesn't mean that she will die soon. My husband was under their care for the last 22 months of his life. And they will keep her on any of her necessary medicines, so you don't have to worry about that. It sounds like your mom would greatly benefit from their services, and if for some reason you are not pleased with them, you can always quit there services. At this point you just want your mom to be as comfortable as possible. Best wishes, and God bless you.
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My mom has been in and out of hospice. They never stopped any of her meds and she always received good nutrition. In fact, due to increased level of care she made a comeback. It is very important to be very involved in her care and make sure she stays on all meds and is well fed and hydrated. They may be over medicating her - that can be a tendency. But you can change that, too
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disgustedtoo Apr 2021
A woman in mom's MC facility was 99 and on Hospice. I don't know what her Dx was for Hospice, possibly heart or lung issues, but this woman was quite spry for her age and condition (she did use a rollator.) She and others would walk several times around the "loop" after meals. She had her own portable phone, to make and take calls. She had a TV with remote. She and I did jigsaw puzzles together (I'd get mom to help!) and had discussions about family, etc. She was not denied food. She wasn't drugged. She ALMOST made it to 101, but a fall in her room led to her demise.

On the other hand, they tried TWICE to deny Hospice for my mother. She was 97, little or no hearing, had a stroke just before they were contacted and because of the stroke (plus limited mobility before the stroke, much less after) I cancelled her Mac Deg treatments. She was already in a wheelchair (refused to stand/walk unassisted, no real reason other than fear of falling, despite having a rollator.) First nurse came off hours and looked at her chart. It was over 1.5 years old, because mom's appt in 2019 was cancelled due to the virus. Telehealth was offered, but I wasn't allowed to be there and she wouldn't understand it. Not only that, they can't check pulse, BP, weight, listen to heart and lungs - WHAT is Telehealth going to do for her (this was well before stroke)? I refused that for myself as well. No medical issues, no Rx to refill, no point!

Anyway, the nurse made them come back after she did Telehealth with mom and doc. They still denied. Biggest answer to my query? She hasn't lost weight in the last 6 months! Lordy people, she only just had the stroke!!! The nurse finally won that battle. They DID demonstrate weight loss, very quickly, because 1) the stroke affected her dominant side, impacting feeding herself and 2) she also had trouble swallowing, so she'd pick at her food and not eat a lot.

Other than supplies and medical equipment, plus checking on her, Hospice didn't do anything. No narcotics until after the second stroke several months later.

I'd say sign on, but YOU decide what, if anything, they give her. Allow the current treatments to continue and see how she does. It won't really prolong her life, but if she was relatively stable before the UTI and can get past the sepsis, she may have many more months or more of acceptable life. It isn't like we're suggesting open heart surgery to prolong life, just treat an infection and move on!
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When my mom signed up for hospice, the intaking nurse told us that the national average of time people in the US spend in hospice is 4 days. Too many people wait too long to call them; they get called when the patient is actively dying and needs pain relief, which leads to the idea that hospice "speeds" death.

My mom went into hospice in the beginning of August; she passed October 8th. At no time during that time did hospice push pain relief medicine onto her; we had the "comfort" pack in the fridge, but I literally didn't crack it open until 5 days before she passed, when I could tell that she had entered the transition phase and was actively dying.

When the intake nurse was talking to us, she went over the list of my mom's meds - and granted, my mother wasn't on that many, relatively speaking - but what we were told was she could continue with ALL of her meds if she wanted, but hospice would only provide her with certain ones of those; meaning that they would contact the pharmacy who would deliver them without charge. But if she wanted to continue with the other meds that didn't fall under hospice's purview, she could do that, we would just be responsible to ask the prescribing doctor for them, and pick them up and pay whatever the usual co-pay was. My mom opted to stop the unnecessary meds gladly - but hospice gave her that choice, giving her the power to decide, which she was so appreciative of!

Don't forget, hospice doesn't just make these decisions willy-nilly. My mom's cardiologist was the doctor of record with hospice, and any decisions about her medication/treatment were made after hospice consulted with him. The organization didn't just make the decisions on their own. It really was a team working together to give my mom peace at the end, and I am grateful for their care. And when mom passed, the nurse came, made the pronouncement, called the funeral home and then cleaned mom up a bit before the funeral home arrived. I was overwhelmed with the respect she showed; as she was cleaning my mom up, she was still talking to her, telling her what she was doing as though my mom was still there. I found it so kind and comforting.

Raysgirl, I am very sorry about your mom, and I can understand your feelings; my mom was a fighter too. My mom started her transition on a Sunday - I went up to check on her, and she was gasping for breath in her chair and said to me "something's wrong - I just don't feel right..." and at that moment I was so thankful she had opted for hospice. I was able to give her the medication to relieve her pain and anxiety, without frantic calls to her doctor or an ambulance ride to the ER. I agree with the others who say you're never ready to say goodbye to a loved one, but I was so glad that when the time came for me to say goodbye, I was able to keep mom pain-free and comfortable in the end.

I wish you peace and comfort during this time!
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OK. Take some deep breathes. I am an RN. I'll try to walk you through some of this.

DNR - do not resuscitate. Basically, if the person stops breathing or heart stops nothing will be done to restart either. No machines to keep heart or breathing going artificially either. She can get oxygen via mask or nasal cannula. Medications, food, fluids, curative care measures are all given - except the ones that restart heart or breathing. CPR is brutal. People are known to have ribs and sternum broken during compressions. If she could not manage recovery from what could be considered a major car accident - make her a DNR.

Hospice - comfort care measures and not curative care. This means keeping pain medications, food, water, and whatever helps the person to be comfortable. If you want her to continue getting food and fluids via tube, that can be done. If you want her to continue getting her medications, that can also be done. Talk with the doctor about each medication and what is does. Decide on keeping medications that help her with pain, to relax, to be at her best... Most likely antibiotics will be discontinued. Her blood pressure medication can probably be given via tube. The goal is to allow her and family/friends time to together to live and relish the relationships. Some people die rather quickly on hospice and others can go for months.

She will pass when her body is worn out and ready to let go. Making somebody a full code will not keep them alive when they reach this point. Putting somebody on hospice will not hasten their death either.

So, again. Take some deep breathes. Ask about each treatment and medication she is getting. If your goal is to restore her to her prior health - then ask for full code and all measures to be done. If your goal is to help her enjoy whatever time she has left in life - then opt for DNR and hospice.
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disgustedtoo Apr 2021
Nice summary!

I know when mom and dad did all that legal paperwork that they opted out of "extraordinary" treatments, aka DNR was on the table. When I signed mom into the MC facility, I signed their DNR form. She was already early 90s, with dementia. I would not put her through any major surgery or excessive treatments. UTI, sure, treat that. Pain, treat is as best as possible without surgical intervention.

When she had a stroke around Labor Day, the nurse called EMTs. Mom didn't want to go, so they called me. She said no, doesn't no mean no? I finally told him if YOU can convince her to go and get testing done, fine. If not, leave her be. Definitely NO hospitalization. I did get agreement from YB, the other POA. Seriously, she's 97, little or no hearing, being treated for Mac Deg (until this stroke), already in a wheelchair, dementia, overweight, WHAT exactly is this testing going to do for us? Confirm stroke? It was pretty obvious that's what it was! Treatment? Other than bringing in PT for a bit, to try to help her feed herself and assist in pivoting for transfers, there's no real treatment for this, at least not at her age. She'd been on BP meds since the dinosaur ages, but now couldn't really take meds by mouth (swallowing impacted.) Nope. DNR and no real treatment. Leave her be, which was her wishes too, even with dementia!
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