My Mother recently passed away just a day after this post, she was a recent 72 years of age. She was diabetic and had a degenerative neurological dementia (not officially diagnosed but was assessed by the hospitals and hospice team that cared for her) along with an ongoing UTI which was causing more confusion. She was on a specific regimen of medication for her diabetes and blood pressure, thyroid, and kidneys. I had seen her just days before arriving at accent care hospice at a long term SNF. When I saw her, she recognized me, was speaking, and was eating food. There was a bit of confusion because the SNF team was trying to get her long term care, but there was an order for hospice from somewhere (not spoken to myself or family members), until finally through a phone call the assistant nurse to the doctor said that the doctor at the SNF was ALSO suggesting hospice because my mother wasn’t improving her condition (but she specified she was not on the brink of death either). We had an interview with the hospice coordinator (or sales rep) and she mentioned my mother would stay on her medications and regimen and after they cured her UTI she could return home with hospice service if needed. The day after she arrived at hospice we were in a shocked state to see our mother drugged up and her mouth wide open with no ability to speak to us. We were told she was loud when she arrived and they gave her comfort medication for her pain. Which no one at all mentioned they were giving her morphine until I read a pamphlet on a table that said that hospice patients are provided a comfort pack My mother began to have difficulties swallowing, and we spoke to the doctor a day after, where he said he would monitor her state for the coming week to see if she may begin the period of transitioning. The swallowing did not allow her to take her medications that she’s been on for over a decade. I asked if they would IV her and they didn’t really say they would, but said she was being given insulin. She began to make some noise the last evening I saw her and the medical assistant saw us and said it’s time for her pain medication. He brought morphine, and I mentioned the doctor told us he would suggest not giving her morphine unless necessary. In this case because she was exhibiting some vocalizing of pain, it prompted him to administer a dose. She died the following morning after the above. I was in shock, as the doctor did not say her death was imminent. I have some strong regret in putting her in hospice. As I mentioned she was 72 and her condition was yo-yoing. Her mental state was especially bad when she had a uti, but I feel like I let her down because I was in charge of taking her to these places, I’ve been over worked working a new job and my old job and managing my life while having her situation on the side, I was seeing her at least a couple times a week prior to her long term care admission which was a month before entering hospice and saw her the last couple days of her life at hospice before the morning. My thing is why didn’t they tell me her death was imminent? When I asked cause of death I got a generalized umbrella degenerative dementia and you never know when your time comes. That isn’t god enough for me. Am I asking for too much for wanting to know what exactly happened those last dozen hours after the doctor set a week expectation for observation? I haven’t received any call other than the call saying we are sorry to inform you she has passed. No one has contacted me that was helping her? Not even the doctor that spoke to us for a half hour to explain what was happening. Is that normal? If the grammar is out of whack I apologize as I wrote this on my iPhone, but I would appreciate your opinions.
I think you have a right to have your questions answered. I wish you peace.
This very ill lady was on hospice. There is no case that any attorney will look into.
Certainly if someone needs to reassure him/herself of this, speaking to an attorney is well and good. Just know, if they don't jump to take a case on contingency, then you are being told, as Handle of the Law says, that there IS no case.
I know nothing about the hospice organization that you used, so I will refrain from commenting on your particular situation.
First of all, I realize that not all hospice providers are the same. I am grateful that we had wonderful providers for our family.
I hope that you won’t mind if I share a few things with you.
Your husband’s grandmother was terribly ill or hospice wouldn’t have approved her as a patient. You must have an evaluation and qualify for treatment.
You mentioned that she was grasping for air. Was she offered oxygen?
My oldest brother was offered oxygen in hospice and he kept removing it, so his nurse didn’t force him to take it since he was bothered by it. He was more comfortable without the oxygen.
Plus dying people do not have ordinary breathing. You will hear disturbing sounds.
I am grateful that my brother received morphine because he didn’t experience any pain.
Being in pain isn’t peaceful a peaceful death. I don’t deal well with pain and I would want morphine during my final hours of life.
My mom was offered oxygen and she was not bothered by it and her nurse left it in. She was kept comfortable with the aid of morphine and Ativan.
OP's mom was relatively young, which may make her death harder to accept and process. Still, it sounds like she had several very significant health issues, any/all of which may have contributed to her death. Of course, OP has the right to feel any way she wants, but IMO she doesn't need to have any regrets or guilt. Her mom experienced a relatively brief and peaceful period preceding her death. All old folks should be so fortunate!
Dr.'s are fact finders and administrators when it comes to their thought processes and conclusions. I recently had a Dr. answer one of my questions in these words; "A report is only design to give you medical fact, not what a staff member may think." This was a reply in asking about what a nurse said to me (who turned out to be correct) and the numbers that were reported over a blood test (which were borderline).
My point is that, (and I'm so sorry your feeling this shame and guilt/grief) you're dealing with medical systems that deal with steel fact and involves no feeling.
And I'm not sure if your mother had a DNR or not? On my parent's medical POA, it's medical and legal language is written that if I'm not there at the time or cannot be contacted, the DR. CAN step in and decide. This is why for myself and my sibs, we try very hard to be seen as much as possible, but sometimes that doesn't even help.
You mother's death certificate is only going to state fact, and sadly, and it will likely be something that is reached for in a sort of "call" based on paperwork documented by the DR. and the facility.
Please please please try not to stress too much over this...although I know you'll have to work through this on your own time and reasoning, I am hoping that it won't be much of a struggle for you. Her passing is fresh. UTI's can cause alot of misguided communication and diagnosis within medical systems and facilities. The handling of a simple UTI can be maddening. You did the very very best you could, and that was/is the only thing that mattered.
Your mother was put on hospice at some point for a reason . An elderly frail person with a UTI can succumb to sepsis quickly without warning , or a stroke , or heart attack . They may not know what exactly what caused a quick transition to actively dying , but something occurred to cause her to have pain.
When no longer able to swallow, at that point she had transitioned and they would not have given her the oral medications that you think they should have tried to give her . At this stage she would not be able to tolerate IV fluids, nor can all medications be given this way , nor would these meds have helped someone actively dying , At this point the focus shifts on comfort care .
It sounds as if you were thinking more in terms of palliative care and not hospice care . Perhaps hospice was not explained to you well enough for you to understand. It is also difficult to absorb everything that is being said at times like these .
At one point you said you were there 12 hours before and she was not able to swallow and they gave her pain med. She was actively dying when you were there . No one can pin point exactly how long she would have lived to be able to give you the narrow prediction you were looking for . I don’t think the answers are there that you are looking for .
I’m sorry that you feel there was a lack in communication , but that did not cause her death . Mom transitioned quickly and you are in shock. What you are experiencing is grief .
But--
Doctors aren't God. They look at the big picture and make their decisions based on what they see, and what they know.
My SIL is a dr. He had a patient who was awaiting a liver transplant. She was totally non-compliant and it drove him crazy. She was sheduled for a colonscopy one morning and refused to do the prep. He was so upset with her he went BACK to the hospital at about midnight to talk to her in person. She just didn't 'feel' like doing the prep. No reason, just didn't feel like it.
After an hour of talking to her, he gave up and came home.
She died 9 hrs later. He didn't see death was imminent. She was very sick, but this caught him off guard.
He learned a mighty lesson: patients will do what they want, AND, you can't predict someone's death, really. He's seen people hang on for years past when they were placed in Hospice. My own MIL is in month 10 of Hospice--when her death was deemed 'imminent' way back in January. We have no idea what's keeping her alive.
ANYONE who is in active Hospice is either slowly or quickly 'transitioning'. You want to be mad at the 'system', but they didn't do anything but what they're supposed to do.
Drs are not able to look into a person's body and tell you truthfully what is going on. I'm sure the dr is as baffled as you are--but with Hospice, they don't really do a deep dig on the 'whys' of someone's death.
It IS a shock to the family, and I am sorry for you for that.
But the pain is over, the unhappy life is done--in time you will come to terms with that.
BTW--Nurses are far better able to tell if a person is in pain--sounds like your aunt was non-verbal-so they'd have to go on her behavior, which is hard.
I hope you find peace with this, soon.
I understand the grief and regret. But please let the regret go now. I was with my dad while in hospice care when he died--he did not get ENOUGH morphine and he died suffering while waiting for approval to give more to arrive, and that is MY regret. (Even at end of life they medical staff to approve morphine dosages so as to not --technically--cause death, which is inevitable anyway)
Morphine is a wonderful drug for end-of-life care, as well as post-op; they have strong controls for dosages, and it gives comfort, and is the standard for hospice. As others have pointed out--they have to give when someone is suffering.
There are also an argument in my family about his not getting IV fluids--until it was explained to us that this could cause his lungs to fill up and essentially drown. (As others have pointed out).
Hospice is there for comfort care when medical intervention is prolonging suffering.
I had a lot of regret after my father died-the regret was that I did not clear up some of my old resentments soon enough to make peace with him. It sounds like you were really there for your mom. You loved her and she felt her love. You have nothing to regret.
As someone who was a mother over 25 years past your mom's age--I understand it must be heartbreaking. She was relatively young. From my perspective, however, watching someone deteriorate and become a shell of themselves only to suffer for years in a SNF, she was spared the worst. I know right now that may be of little comfort. Just know you have nothing to feel regret for. We cannot control death.
Wishing you love during this difficult time. Be kind to yourself.
That's exactly what happened, and I'll tell you, that feeling of not caring was the best thing that ever happened. It removed the fear, I was able to relax, and that helped immensely.
Your mom was suffering. She was given morphine which took away her fear. Be grateful for that.
Please take advantage of the grief counseling hospice offers, and consider getting the book Healing After Loss, by Martha Hickman. You only read one page a day, and it'll help you get through the first year.
Doctors cannot predict the death of a patient, so it isn't fair to expect them to do so. The best they can do is give an estimate. She was likely septic, as mentioned above, and that goes fast. Don't hang your grief on a doctor who didn't give you a correct the moment she was going to pass.
I'm really sorry for your loss. It's always painful no matter how someone's end comes.
My condolences on your loss.
Your mother was on Hospice care.
Hospice is end of life care.
In hospice care a patient is NOT allowed to suffer. When there is pain expressed (as your mother DID express it) that pain will be relieved with medication even IF that medication may speed death up by some seconds, minutes, hours, or even days.
From what you have written here you seem fully informed of what medications were given, why they were given, what your mother's underlying conditions were, that your mother was dying. You yourself say the doctor spoke with you for 1/2 hour. You understand all of the major system that were killing your mother.
Loss is always hard. Sometimes trying to "find something or someone to blame" is a way to prevent our moving into and through the grieving process. For myself, as a nurse, who started nursing before we had hospice, I am so thankful your Mom has hospice.
PS: Fluids are not normally given during hospice care. They are A) difficult for a body to handle during this process, often go into the lungs, making breathing more difficult, because the kidneys and heart cannot eliminate them as normally would be done. And B) cause more difficulty with breathing C) prolong the difficult and painful dying process.
I am so sorry for your grief and for your loss. I hope you will be able to move to a place where you are comforted by the knowledge your mother no longer has to suffer without relief and you no longer have to stand witness to the awful suffering she was going through.
Many years ago when my mother was alive, I was trying to come to terms with how I would feel when preparing for her death.
I attended an ‘end of life’ seminar. I found it extremely interesting and helpful.
One thing that was mentioned was that not all hospice providers operate in the same way. We were advised to research thoroughly before selecting an appropriate organization.
Family members were told not to object to the use of morphine with the mindset that it would hasten their death. Instead, to view it as the most humane way to treat a dying person.
Terminology of ‘death’ was spoken about. The speaker (who had a mental health background) said that in general he saw when people used the word, ‘died’ instead of ‘passed’ they were able to process death more thoroughly.
He said that we ‘pass’ a kidney stone but people die. It’s permanent.
I have no idea how the expressions ‘passing away, passed or transitioning’ came about exactly. Maybe people are trying to be more gentle. Who knows?
Nevertheless, they are dead. There is no way to sugarcoat it as far as I am concerned.
I have never corrected anyone who says these common expressions. I don’t say to them that I don’t like the expressions. I cringe a bit privately inside but I’m polite and I respect their choice of words to express themselves.
It’s just that I don’t use these expressions and have never been comfortable saying ‘passed’ long before I went to the ‘end of life’ seminar. I have always said die, dying, died, dead or death.
Oh, another thing that the speaker said was, “Nurses are our best friends when we need care.” I love that. He joked about doctors sometimes being smug but nurses are wonderful and do their jobs very well!
I'm sorry about your mom. She is at peace
Don't get your hopes up expecting to hear from those who helped her. They've already moved on to the next person.
Many medical personnel think of death as failure, so they want to focus on the success.
Continue to reach out to them if you feel like you need more information about your mom’s condition during her time in hospice. They will also have a social worker on staff and clergy if you would like to speak with them.
Please know that none of this is your fault. You certainly didn’t let her down and be comforted that they were managing her pain during her final hours.
72 is young. I just lost a brother who was the same age as your mom. I’m saddened that he didn’t live longer but I know that he struggled with his heart for many years and I am glad that he is out of his misery.
He died in the ambulance on the way to the hospital. I keep having thoughts of wondering if he was afraid or if he remained in pain.
He was experiencing pain and decided that he needed to go to the hospital. His wife was at work and then she received a phone call saying that he didn’t make it. I feel awful for my sister in law, his children and grandchildren.
There is always disbelief when someone we love dies. Even when we know that they have been experiencing health issues. We are in shock and aren’t always ready to let go. We feel sad because we haven’t had the chance to say goodbye to them.
My brother knew that I loved him dearly and I am quite certain that your mother knew how much you loved her.
I wish I had words to comfort you. No one can say anything that will make your pain go away. You’re grieving the loss of your mom.
If you would like to share your thoughts with others about your loss, look up griefshare.org, it may help you to process your emotions. They have meetings and you will be with others who share a loss.
Wishing you peace as you mourn the loss of your dear mother.
If you are a believer, try to trust in God. Her time would have come if there was no medication available. Don’t prolong your pain by blaming yourself or other people.
If it’s helpful, I have regrets and should-haves/could-haves too about my father’s last days on hospice. In our case, I wonder if we could have started giving the comfort meds earlier than we did, so we could know how he responded to them and establish a dose…. Maybe that would have been better… And so on. But you know, I think we have to accept that we did our best and I’m sure you did too.
Best to you. 😊
My dad had been declining for two years, but the end was especially rapid. On July 4, he came downstairs by himself for family dinner. On the 25th, he was found delirious after which the palliative care referred him to hospice.
He died 11 days later.
Please do not blame yourself .
Only the doctor would be able to give you more details .
However , I am guessing that her UTI lead to sepsis , which can happen quickly and cause death . She had very serious issues , diabetes , kidney disease which make it much harder to recover or survive sepsis. Sepsis is common in the elderly . Take comfort in that they were giving her morphine to keep her comfortable .
Doctors tend to put an existing diagnosis as a cause of death .
Doctors can guess how much time someone has left , but it is only a guess . Sometimes an elderly person who is already ill , and not getting better, gets sepsis , or a heart attack or stroke and die more quickly than expected . Conversely we have had 3 times in this past year we were told my father in law was going to die and he hasn’t yet . He has somehow pulled through .
Again , so sorry for your loss and that things were not explained to you better .
A stroke? An aneurysm? No way of knowing. She was not afraid of dying. She died in peace and pain-free. And all that brings me comfort.
you didn’t do anything wrong. PLEASE DO NOT GO DOWN THAT GUILT PATH.
Just know these lives were not given an instruction booklet… can you imagine? Mine would’ve been destroyed years ago.
The comfort package…
mom had one too, but a hospice nurse who answered my call literally showed me how to crush the morphine pill and slide it in her mouth, every hour I was told….
she never mentioned the Ativan which separates the brain from body… I have guilt… it’s been a few years now….
Please note…. You are okay… mom is not suffering anymore. She is okay. She’s looking down at you, smiling…
Talk ti her.. she will answer…
We cannot predict what’s going to happen…
Just know she is whole again.. she’s not suffering.. not in discomfort…
Do not feel guilt.
Look up and tell her you love her…
hugs….