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?
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.
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?
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.
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.
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.
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
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.
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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