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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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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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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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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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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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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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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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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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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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