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My Mom's nurses (provided by her insurance) keep pushing us to start hospice care. The doctors want her to have a DNR. My Mom (96) has frequent hospital stays because of the trach and/or feeding tube.


She is not in any pain. She acts as though she is completely unaware and not able to move or talk when nurses or therapist are here or when she is in the hospital. We know she is aware, she talks and moves when they are not here.


We believe this is all just about money and her age. From the things we have heard, it seems they just accelerate the end-of-life process.


What experience have you had with hospice?

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"We believe this is all just about money and her age. From the things we have heard, it seems they just accelerate the end of life process."

I will happily share my hospice experience with you. But first, I would like some more information from you: what, specifically have you heard about hospice, and from whom? I am especially curious about your belief that "this is all just about money and her age".
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Tsmitty57 May 2022
My wife just passed with dementia and she had hospice for two and half yrs hospice team was outstanding everytime they were doing something I questioning everything they were doing
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This is, to be honest, not much of a quality of life. You mention a trach, so heroic measures have already been taken and are in place. Without them your Mom would have passed. And, I assume, without artificial administration of nourishment.
Because the medical professionals see no quality of life here in their own opinions, they suggest hospice and comfort care to you. At some point medical care without real benefit is nothing short of torture imho as a lifelong nurse.
If you are unwilling to make that decision simply tell them that you are not.
I will be quite honest with you, however. I have DONE CPR on the fragile chests of elders. I was a nurse my entire career. I know what it is to put pressure on a frail and fragile chest and to hear the bones splinter, snap and break. I believe that anyone who orders CPR on someone in their 90s should have to be right there to see it, to hear it, to bear witness to what they have asked be done. I think CPR is cruel at a certain point in life. I am 80 years old. I wrote out my own DNR and POLST with my MD decades ago. I have written that I will never accept a trach, any artificial feedings, or any dialysis.
We all die. It cannot be prevented for a single one of us. Your Mother has had a long, and I hope a wonderful life. I believe the medical professionals are suggesting hospice to you out of the goodness of their hearts, and because for them, this is not a quality of life.
You do not agree. I must assume you and your mother spoke about what her wishes were. I hope you honor them. You are POA for your Mom I assume, or her guardian, her trusted next of kin. So it is on you to make the decision. Your mind is apparently made up, and that is fine. But you can expect any kind and gentle practiioner to suggest hospice to you at this point; simply tell them no. It is your decision to make.
If the practitioners wanted to make money off your Mom they would keep her alive forever. They wish her comfort and peace. I wish you both comfort and peace and I leave this decision in YOUR hands, where it now belongs. That doesn't preclude my giving you my honest opinion.
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I can relate to this frustration; I experienced it as well when my father was seriously ill, on a ventilator, unable to walk, but still desirous of being independent and recovered, which he did, with a lot of support outside of the medical field, but also top notch support w/I the medical field when I took him out of the county and into an area with highly rated medical treatment.

I think the biggest factor in pushing for hospice is by medical people with no experience with determined individuals, and especially for survivors of the Great Depression and WWII.  Many people today don't have the level of determination that those generations did, and don't understand how resilient those folks became through the great challenges they faced.  

After taking care of my mother (with my father and sister), then my sister (with my father), and lastly my father, for about 20 years, I realized that (a) people who've been through similar experiences know more specifically about the challenges, and many are capable of dealing with them, while others are not and don't want to;  (b) younger medical people seem more likely to look to hospice as opposed to quality of life while the patient is still living, and how to maximize that quality in a safe manner.

I had to be blunt with people who arrogantly presumed to make this decision for my father, after only a short interview while providing medical treatment.   And I actually "told off" one baby (terms we used in law firms for new attorneys with no experience) doctor who had the arrogance to tell my father to his face that he "had a good life, and it was time to recognize that and stop fighting." 

I told her she had no knowledge of his life, whether or how it was good, she had no legal authority or experience to make the decision she thought was appropriate as well as no standing to do so.   (I also asked the hospital to take her off Dad's case and replace her with someone experienced; they did so.)

I did discuss the issue with a more experienced doctor, and he shared his concern about the longevity and quality of Dad's life, but he did so privately, and with compassion.   

I was also advised by a doctor and nurse when Dad was seriously ill during the long 7 month journey well over a decade ago to plan for his death.   I ignored them.   When we saw that same doctor in the hospital over a decade later, Dad did a quick jump-up and kicked his heels and reminded the doctor how wrong he was.

I would agree though that your mother should execute an end of life directive as well as (durable) power of attorney to authorize you to hire if necessary to provide for care as needed.

Have you been advised by any doctor to consider hospice, or are these nurses who are giving you this advice?
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Lifesabitch May 2022
I thank your Dad for his service and offer my sympathies. Your story is like mine. WWII, Navy. I also work in a home. My dad had dementia. Toughest people ever! Our current elderly. How did we all become so soft. My Dad said always, "tough times never last but tough people always do"
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How have you determined that “she is aware”? Does she respond appropriately verbally to questions, ask for what she needs (comb, Kleenex)?

Both of my experiences with hospice have been totally positive, but I have learned in the time between them that there are some hospice programs that are better than others.

I had slightly more time to check my mother’s hospice out, and found the services to be excellent for the short time she needed them, and my present LO’s services were contracted during the pandemic, so a little different as far as arrangements for them.

My current LO has been in end stage dementia longer than my mother was, and I had some concerns about administration of pain relief, but her residence is managed and owned by Catholics, who have indicated their sympathy and agreement with Catholic policies, which are strict.

We are paying (slightly) less now for her care than when she was enrolled in hospice, and I can!t see any bi advantage to them financially.

It sounds as though there are some troubling issues involved in her care. I truly hope you are able to make some decisions soon that will contribute to her peace and comfort, and also to yours.
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Why will your mother not talk or move for the nurses? If that is how she is with medical personnel, then of course they’d recommend hospice. If she is aware, why does she act like she isn’t? How truly aware is she?

DNR is up to her, but bear in mind when someone so elderly is ‘brought back’, It is traumatic to a body. CPR alone can result in broken ribs. And they often don’t have as much cognitive ability as before.

Hastening death is not the purpose of hospice. It’s to keep a person as comfortable as possible once they have exhausted any possiblity of medical recovery or better quality of life. It doesn’t always mean someone is at death’s door.
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I have to say my jaw dropped at no DNR in place. I certainly would not have wanted someone doing chest compressions on my elderly mom…

my mom was on hospice just a few months before passing. She could barely walk to the bathroom, The falls started, we had to take her walker away . Then she could no longer assist pivot to her wheelchair. Then she could no longer stand , all went fast ..my mom had a cna who visited twice a week , a registered nurse weekly, a minister almost every week whom she loved and made her happy.
The wheelchair arrived a few weeks prior to taking away the walker. The special wheelchair arrived with the hospital bed and hoyer lift. Depends, wipes , chux pads all provided .

most of all it was comforting to know my mom had more eyes on, hands on help in these days. Staffing is always an issue. They took really good care of my mom. I don’t know what would’ve happened without the hospice. She probably would’ve been in the hospital instead. I would say hospice was probably cheaper than the hospital. I don’t think it’s all about the money.

PS … get the DNR
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I can only imagine that the medical professionals are pushing for hospice because your mom is 96 years old and not in good health. You yourself say that she has many hospital stays. How many more hospital stays will it take before you say enough is enough?
Hospice is recommended when the patient is deemed to have 6 months or less to live, and the purpose of hospice is to keep the patient as comfortable and pain free as possible during that time.
And while yes hospice does charge your moms Medicare a lot for their services, it is all covered 100% under moms Medicare. That means any equipment, supplies or medication needed will be covered 100% under her Medicare and she won't have to pay a dime.
At your moms age it certainly seems very appropriate to get hospice on board, as it will be an extra set of eyes on her, with a nurse coming once a week to start, along with aides coming about twice a week to bathe her. And yes to be on hospice you must sign a DNR for her, which I'm sure at her age she would want anyway.
My husband was under hospice care in our home for the last 22 months of his life, and while I had many issues with them over that long period, there were good moments as well.
You just have to stay on top of them/things and make sure that your mom is receiving the care that she deserves.
It certainly can only be helpful at this point to bring them on board.
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Why on earth would you want to extend your mother's life in THIS condition, at 96, with frequent hospital stays, trachs and feeding tubes????? The doctors are suggesting hospice care because that is the most humane thing for HER. To stop all this medical intervention and allow nature to take its course now. Anything else is cruelty, in my opinion. Hospice's purpose is to keep your mother comfortable in her final time here rather than to keep her in misery, poked and prodded all the time. I've had hospice services twice for my parents and they were wonderful. They did not hasten my parents demise, nor did doctors make any money from Hospice! Wherever you've gotten your ideas from, they're wrong. Hospice keeps the family involved with all med decisions, every step of the way, plus they provide medical equipment and supplies to the patient (and medications) free of charge. Medicare pays the entire bill. Look into their services and you'll find out for yourself without speculation.

If your mother is aware and interacts with you, why not ask her what SHE wants rather than put words in her mouth and make decisions for her based on what you want? I have made my wishes crystal clear in that there are to be NO FEEDING TUBES or VENTILATORS or any other artificial means taken to extend my life, certainly not if I'm over 85 years old!

When I spoke with my 90 year old father's doctor about a DNR, she told me it's cruelty NOT to have a very elderly parent sign one. If CPR is used, ribs are broken and the aftermath of the procedure is SO taxing on the elder that if he lives thru it, he's likely to be in worse shape than he was beforehand. True story. Both of my folks signed a DNR of their own volition with no coaxing at all from anyone.

At some point, we have to acknowledge and accept that our parents are going to pass. How do we want that final passage to be? Fraught with suffering and endless procedures in medical facilities? Or calm and relaxed, in bed at home or in their place of residence with soft music playing and no pain or agitation whatsoever, with their loved ones nearby holding their hand? I chose the latter for both of my parents and have no regrets.

Good luck to you.
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Cover999 May 2022
Docs didn't make any money? What state are you in? Reg Doc and even GI Doc made money the last days before my mom passes even though their services were no longer needed. Heck the nurse called to let me know she had passed not the regular Doc or even people who work with him
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Not as much money as to lessen the cost charged to insurance. Hospital subtly pushed for me to make the decision to end life support for mom to probably save on the costs charged to insurance.
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lealonnie1 May 2022
What does the hospital care how much $$$$ is charged to insurance companies, Cover???? Doctors have no care or knowledge of such matters and are making recommendations based on their patients best interests. If they were money hungry, as the op suggests, wouldn't they KEEP the patient IN the hospital LONGER ??? When the doctor suggested hospice for my 90 yo father after an MRI showed his brain tumor had grown, it was for one reason only I believe: to give him a better end of life experience and no false hope by thinking the hospital could keep him alive a few more months. For what? He'd suffered enough!

When I had cervical spine surgery in 2008, the hospital billed my insurance company $249,000.00 for the surgery and 24 hrs in hospital. I called the insurance company to protest...as was suggested in my policy. If a patient thinks the bill is too high, they are urged to call the ins co. Well, they laughed at me! Said the $249k bill was par for the course and they'd negotiate the REAL price with the hospital themselves. It was nothing for me to worry about.
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Do you want your mother to reach 100 years? According to your description, she is ill and not getting well at all. She seems unaware of her environment and barely communicates. Do you want her to continue living in this condition for 4 more years? If she were in perfect health and happily enjoying every day, it would make sense, but she's not.
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Doctors who refer patients to Hospice Care do not make money. On the contrary, they lose money because the can't see the patient anymore.
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Cover999 May 2022
Not the ones over my mom, Even though she was now under the care of the Hospice Doc he still came to her room and billed her just like the GI Doc even though the feeding tube had been removed and feeding discontinued. His demeanor even changed the time he came to the room knowing he did not have to. He spent less then 5 minutes and left. It pays to work for the second highest rated hospital in the world.
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Just as people choose to not resuscitate, they can also choose to do so. And if they don’t want hospice, no one should pressure them into it.
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My mom had stroke-induced dementia and we had her in and out of the hospital and to rehab several times. After awhile, we got the hospice talk from a hospital employee. My father wouldn't hear of it and eventually we started using a company that sends PAs to the house so no more hospital. She lived maybe a year more, I'm not sure. Eventually, we did have hospice come and it was a comforting and relieving experience. I am a lay person, but I strongly recommend she have a DNR. CPR breaks the chest bones and very often does no good. As for hospice, you might ask the nurses where they're coming from on that. Are they noticing signs that you're not? If you can, talk to your mother (duh, you probably already thought of that). If she's feeling fine, hospice can wait.
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Plastichooked May 2022
It almost sounds like her body is already starting to shut down.
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I wonder why she doesn’t talk or move when they are there. Have u asked her why?
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Sands, you say that she had a brain bleed and surgery June 2020, no significant damage, yet she had to have a trach and a feeding tube one month later, why? Was it from the stroke or did something else happen?

They aren't trying to end her life, they are trying to stop the cycle of hospital visits that do no good and are most likely really difficult for your mom.

She doesn't have to accept the service or any medication they offer, if she does accept.

Interview several hospice providers and then decide what action should be taken.
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If you found your Mom not breathing one peaceful morning, what would be your response? Sit and hold her hand & say goodbye. Or try to revive her & start CPR?
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Im struggling with Dr's doing the same. Mom is 94 has end stage chf. In just the past 2 weeks, moms legs were already bad with fluid retention. (Also drained her lung twice) now they are blistered puss filled and oozing fluid. I called Dr to bring her in. ( yes I know there's nothing left to treat underlying) but I just wanted them to look at legs to tell me how to care for them, it's horrible. I was told nor to bring her on, we already discussed hospice several times for 6 mos now. They are kissing her off, cardiologist too. Ordering echo dopplers and ultra sound of legs for 2 mos from now. She won't be alive then. Such a joke. Because mom don't want hospice and we (family) support her, we get looked at like we are delusional or stupid. What ever happened to faith docs? Geez. Well I am now consulting hospice in 2 days. I'm trying to help mom make this decision as I got nothing else. If drs have no good advice other than hospice, what the hell do you do. I do believe my mom needs hospice, but it's taken 4 mos of mind wrestling to even get to this day. Why am I doing a consult? Probably signing up? Because drs aren't helping me anymore. I'm one of 3 in my family helping her to stay in her house. I don't want to be the one there when a 911 call has to be made. If mom goes to hospital she won't be back. So I'm now on board with the only way to let her die at home. We do have a DNR we recently looked into a POLST order as well to keep her from hospital. Still on the fence about POLST. She has advanced directive , living will and we think haha think we are prepared. Sorry for Long story about My mom... my point........keep following your instincts, your moms wishes etc, until you can't. When it's time to turn the corner you will naturally turn it. Everything goes according to His plan not ours. Hang in there and keep the faith that your doing what you were meant to do, things will change when they do. Even if like in my moms case, after their gone and we maybe see we should have started hospice long before we did, if we did. There will be no regret. Try your best follow your gut and pray.
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sp19690 May 2022
The blisters are happening because her veins are not moving the blood from her legs to her heart. She probably needs antibiotics because it sounds like she has cellulitis because of that. Which can lead to sepsis. Elevating her legs can help but the blisters should be treated with medication because they wont just go away on their own. Medistran Manuka honey for topical help with the blisters too.
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Short answer because she is 96 and dying. And they know any interventions at this point are like putting a bandaid on an amputated arm.

The thing about dying is that the human body is designed to keep going no matter how much pain or suffering the nody is going through. Most people don't get the luxury of dying in their sleep peacefully. Many suffer intense and excruciating pain as their bodies fight to keep going. Not to mention mental anguish of being trapped in a body that cannot move.

If it was about money they would keep doing procedures to keep your mother alive not recommend hospice to keep her comfortable as her body shuts down.
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"...all just about money and her age..."

And how would you rate your mother's quality of life over the last 12 months, marks out of 10 where 0 is dreadful and 10 is great?

You say your mother moves and talks as long as there aren't any health professionals around watching her. Well, if you say so, it's so; it could be, for example, that she lies still because she is trying hard to focus on what is happening or what they're saying. Could you capture some images of how she is when they're not there to show those professionals, perhaps?
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Doctors only suggest Hospice when they feel its needed. Where I live, Nurses aren't allowed to suggest it so for these nurses to suggest it means they feel its time.

If I was your Mom, I would welcome Hospice. Having a trach and a feeding tube should only be used to help someone get over a hump, they should not be used to keep someone alive. Are you afraid you haven't done enough, that maybe there is one more thing that can be done? The professionals are telling you its time. Really, what does your Mom have to live for. She has no quality of life. And I will bet she is ready to go. Without the trach and the feeding tube, she would have been gone long ago. Let her go. Get that DNR signed. As said, for a person ur Moms age doing CPR on her is cruel.

No one is going to make money off her. Medicare pays for Hospice care. Morphine is given to ease breathing problems too not just for pain. I think you need to talk to a Hospice Nurse to explain to you what will happen. I think a lot of the wrong information that circulates about Hospice comes from family members that did not understand how Hospice works. They are not there to prolong a persons life, they are there to make the transition from this life to the next pain free and peaceful.
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It's about QOL. To those 'in charge', if she is playing games with them and acting near death, that is what they're going to 'chart'.

Around family, she acts better, right? She's probably somewhere in between.

Hospice is NOT a big money maker. People with no insurance, no money, etc,. will still qualify for Hospice. It is a genuinely kind and loving way to help the dying process. My dad's experience and my FIL's--both sweet and beautiful and PEACEFUL. As opposed to my DH's aunt, who had family members literally fighting each other in the hospital as half of them wanted to do EVERYTHING possible to keep her alive. The other half wanted her to have a dignified death.

In the end, she died in agony, crying and with half the family being kicked out of the hospital. How was that a good 'end'? It's been 30years and many of the family has not spoken since.

I am a cancer survivor. I know my limits as to pain, lack of QOL and when/if my cancer returns, I will NOT be a brave little lady and fight for one, two more days. I guess the memories of those long months of being so sick have made me appreciate the good days and not wanting to live one minute past my sell by date.

Hospice allows death without pain, in it's best situation. They cannot promise that, but they can provide all the tools necessary to aid a gentle passage into the next life.
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