I already know that many people who have loved ones pass away in hospice think that it was a God send. Namely because the person was probably already actively dying prior to hospice involvement. This post will not resonate with you. This post is for the droves of families, like mine, who were rushed into choosing hospice for their loved ones OR falsely manipulated into thinking it was necessary because your loved one had a terminal illness.
The thing is that my mother, although having a terminal illness, was laughing, dancing, talking, eating and very alert on the day I signed for palliative care after they pressed me to death about it. I felt I had no choice. They assured me that they'd make her comfortable and whatever she wants she gets. It's all about her desires during this transitioning period.
I took a video of my mother dancing and smiling only hours before she fell almost into a comatose state. They told me that ONLY AS NEEDED they'd give her morphine and Ativan. They told me because her body will start to produce great pain as the process progresses. So I agreed. What I didn't know is that after that initial permission given by me, they were doping her up at least 3x a day and swearing it was the lowest dosage.
Even after I demanded they stop the morphine and they did their best to convince me that any little movement was a sign of distress, my mother kept getting worse. Finally after thinking that maybe I am tripping, I decided to look this subject up. To my dismay I found droves of stories identical in almost every way to mine.
I took my mom off of hospice and she's on life support in the ICU. We (the people with this experience) are not all just in denial or lacking understanding or simply grieving. We all have the exact same story. Loved one very responsive though terminal. Could have lasted a good while longer. Exact same two drugs given (morphine and Ativan), promise of lowest dosage and suddenly our loved one completely vegetated overnight. Nurses trying to convince you that any movement at all was pain and they needed more drugs. Dehydrated because the ability to request water was taken away but they sure can swallow the liquid meds.
Who thinks they should be investigated and is willing to do whatever it takes to get them at least investigated? Hospice in general. The practice.
Morphine and Ativan to be given as needed would come under the heading of PRN medication. PRN stands for pro re nata = as the thing arises, literally. The documentation for PRN medication is separate from that for routinely prescribed drugs, and there is a process to follow.
You as your mother's proxy made the major decision to admit your mother to hospice care; but the smaller, individual, daily decisions to take or not take, to request or not request, the PRN medication remained with your mother. At the recommended intervals, her team would have asked her if she wanted pain relief, for example, or if she was experiencing agitation or discomfort. What must be in the documentation is whether she was able to express a preference and what that preference was. If she wasn't able, then the reasons for giving or not giving the medication must have been recorded.
Of course the system is not perfect, not least because patients aren't bound by the protocols and don't behave or respond as the regulations assume. E.g.
- Would you like your Oromorph, Mary?
- What's that?
- It's the liquid morphine you've been prescribed for pain relief. You are allowed to take one or two spoonfuls as needed if you want it. You last took some at 08:00 and it's now 16:00, so I can help you with it if you like.
- I'm not in any pain.
- That's good to hear. We'll be back at bed time so you can have some then for overnight if you want.
- But I might be before then. Should I take it now?
- We can give it at 4-6 hour intervals, so you can if you wish.
- Should I?
- I can't give an opinion, I'm sorry. It's your choice.
- I don't know.
The decision is the client's to make. We cannot help with it. But the client is asking us to tell her what to do, and it takes jobsworthiness and practice to continue to refuse to tell her what to do, and being only human our team are sometimes going to fall for it and say "well, I would" or " gosh, I wouldn't" when they really, really shouldn't.
To add to the fun, you cannot correct a MAR. Once you have documented the client's decision to decline her medication, and you are about to leave, and she changes her mind and asks for it, you then have another one-two-three sections to fill in and a phone call to make and an email to send to document her change of mind.
Four times a day.
And bear in mind - this is just the process for low-level, basic support for clients in their own home. If we have guidelines this strict, you can imagine what they're like when the medications are more potent and the patients are more vulnerable.
So if ever you are unhappy with what happened, start with the documentation.
Were your claims valid, 'all of you', hospice as a whole would have been shut down LONG LONG ago for 'murdering' elders and many of the nurses would have been investigated and charged with murder, and be serving sentences in prison, as happened with Dr Jack Kevorkian.
Remember him?
Murad Jacob "Jack" Kevorkian (May 26, 1928 – June 3, 2011) was an American pathologist and euthanasia proponent. He publicly championed a terminal patient's right to die by physician-assisted suicide, embodied in his quote, "Dying is not a crime". Kevorkian said that he assisted at least 130 patients to that end. He was convicted of murder in 1999 and was often portrayed in the media with the name of "Dr. Death". There was support for his cause, and he helped set the platform for reform.
In 1998, Kevorkian was arrested and tried for his direct role in a case of voluntary euthanasia on a man named Thomas Youk who had Lou Gehrig's disease, or ALS. He was convicted of second-degree murder and served 8 years of a 10-to-25-year prison sentence. He was released on parole on June 1, 2007, on condition he would not offer advice about, participate in, or be present at the act of any type of euthanasia to any other person, as well as neither promote nor talk about the procedure of assisted suicide.
THAT is what happens to people who purposely help elders 'hurry along' their deaths: they go to prison.
I agree with the person below who answered you a lot more sensitively than the people who answered my question on this forum. I do believe that there probably good organizations out there and there are bad ones. The problem is, there is no recourse for the bad ones--and they leave broken lives in their wake.
I think I will need to exit this forum given the insensitive responses I received last night. If you aren't interested in connecting directly, on this, I have some thoughts about this. I do not want this to happen to other people.
I don't care what the nay sayers feel about my experience. It's literally my experience. By the way I have contacted the people that need to be contacted outside of the agency. Heck even the hospital had questions. So again, if this hasn't happened to you then it won't resonate with you. This forum is not for you. It's for those who have the experience that I've had.
People are cold blooded and belittling. I feel your pain and thank you for your comment.❤️ Definitely want to reach out to you further.
Not all Hospice are alike. Just like any profession there are good, there are bad, there are horrendous.
Just like any other medical decision you can change your mind, just like any other service if you are not happy you take your business elsewhere. There are ways to file complaints. If this was your experience you should contact the Hospice and voice your opinion and your view of what happened. But to make yourself heard please do so in a polite, organized way, no one likes to listen to a "rant" or accusations. Facts, polite.
My Husband was on Hospice at home. I was the one that gave medication I was the one that decided if he needed medication. If your mom was on Hospice in a facility it was the STAFF at the facility that was administering medication NOT Hospice staff.
*By the way liquid medications are absorbed through the mucus membranes in the mouth they do not need to be swallowed so the liquid medication is different than giving ice chips, a glass of water or other liquid that has to be swallowed.
If you have proof that someone committed a crime, call the police. If not, ensure that your decisions are driven by what is best for your mother, even if they aren't what you want. Her comfort, wishes and dignity are all that matter at this time.
While you may be wrong in your take on this, it is just possible that you are not, at least for the service you used. The ‘Angel of Death’ doctor in the north of England killed about 60 older people (from memory) before people realised what was happening. The news a week or two reported the trial and conviction of a couple of US judges for sending children to a jail with which they had financial ties, in totally unjustified circumstances. Bad things do happen sometimes.
You may have found others with similar experiences, but blaming all hospice services weakens your ‘case’. This is NOT the norm. Can you collect any data yourself from others? What services were involved, and how many experiences per ‘suspect’ service? Are there ‘clusters’ of cases? Can you discover any financial motive? Other posters have said that hospices are usually funded per service provided, and have no incentive to speed death. Is it possible that suspect services are funded per ‘through-put’? If you do find data that is concerning, there are law schools in the US that have investigated similar things, from unfair convictions onwards.
I hope that you find a way to peace, either by proving your suspicions or by moving past your distress. Yours, Margaret
Once she entered hospice, the hospice nurses questioned me when I said I wanted to continue medications such as her insulin for her TYPE ONE diabetes, and blood thinner and heart rate medicine to manage her a-fib. Any time she even hinted of being in pain, they wanted me to dope her up with morphine. When she got mad or anxious, they immediately wanted me to give her the full dose of Ativan (I did give her a baby dose once, and all it did was agitate her MORE).
Even worse, when I asked how often I should change or move her (she also had a pressure ulcer that developed in nursing facility), they told me that moving her would just make her uncomfortable, so it would be "OK to leave her sleeping all day" because that would be most comfortable--I could just wait for a once-daily visit from a bath aid. Leave her all day. In a soiled brief. And of course, I was just supposed to keep her on morphine to deal with the pain of the pressure ulcer.
I listened at first, and let them give her the morphine. That sent her into a nearly comatose state and right after, she had a recurrence of C.diff. Once the C.diff hit (causes massive relentless diarrhea), they wanted nothing to do with her and told me I would either have to have her admitted to a hospital or take her to a skilled nursing facility because they would not treat the C.diff.
Back to the hospital she went. After they got the C.diff under control, they discharged her back to hospice, giving us no other options.
But because we had had such a bad experience with the first hospice, I went with a different agency. Although the second hospice also maintained its main focus on end-of-life care, this time, they did NOT talk about withdrawing all medications (they told me they thought doing so would not be in her best interests). They suggested the morphine and Ativan, but did not push it. They listened. They saw my sister as person, not just a dying patient, and they worked with us.
It is now four months later, and my sister has gotten better. We DID keep her moved and cleaned regularly, and we healed her pressure ulcer. All of her numbers have normalized. Hospice is now letting us know that, if all things stay the same, they will discharge her from hospice at the next recertification date.
She still has major cognitive issues, but she is not imminently terminal. Frankly, I doubt she ever was. The doctors never gave a clear diagnosis for sending her to hospice (the hospice agency just had to guess). What she would have died from, had we gone that route, was the withdrawal of care the doctors recommended. A form of euthanasia, I think. It reflects the kind of care she got even before they sent her to hospice.
I do not think ALL hospice agencies focus on dying above all else. But our experience with the first hospice we chose (which was highliy recommended, btw), was exactly as you described. The second, much better.
People just need to know about the fact that different hospice agencies can offer very different experiences. If a loved one is truly imminently terminal and in a lot of pain, then the "morphine/Ativan/comfort-above-all" approach is fine. But, yes, I believe that some people get sicker and die whole lot sooner than they otherwise would because some agencies do not allow for the possibility that sometimes, some patients still have time to live well. Unfortunately, for hospice agencies that rely only on the morphine/ativan hammer, every patient is a "nail."
All this to say: I hear you on this.
The good one, was it nonprofit?
Please get counseling for your grief and pain. Please.
Hospice doesn't get paid if their patients are dead. That alone should resonate enough for you to understand that they aren't killing people ahead of their time.
I'm appalled that you would put a dying woman on life support. THAT is the cruelty, not hospice.
I'm going to guess you didn't read any of the information the hospice company provided when your mother was admitted to hospice. You didn't know that a doctor has to make the recommendation for hospice and hospice has to ACCEPT that diagnosis in order to accept the patient. It isn't all in your court, except to give the OK to do the humane thing and focus on making your LO comfortable and focus on the quality of their life and not the quantity. That's where you failed your mother.
I guess hospice will now have to screen family members for suitability for hospice, not just the patients. I can't imagine being a hospice nurse and having to fight with a family member who doesn't have the slightest idea what's going on and relies on internet stories for their information. Thank goodness my family knows and understands how hospice works and would never make me suffer on life support.
The healthcare system truly failed my sister at every turn, including when the doctors sent her to hospice. The very few people who actually treated her decently were those affiliated with the second hospice agency we chose--unfortunately, she needed that level of care and treatment far sooner to truly help her make a meaningful recovery from the initial injury (brain damage due to a blood sugar drop in her sleep). Once she woke up from her coma, she was misdiagnosed, dismissed, and often completely ignored.
As her guardian, I could find very few healthcare providers who cared to make any effort on her behalf at all. The fact that she is in hospice now is largely the result of a culmination of many doctors writing her off because of her age. She was in her 70s--why should they bother trying to save someone of that age? She's old, so it makes sense to just let her go peacefully. That is the attitude we got--ageism at its finest. The original poster might have gotten a very similar response.
Strictly from the perspective of facts and reality, it seems to me that attempting to “investigate” something that is in some ways so ephemeral might be all but impossible..
I have seen people both peaceful and wracked with anxiety, alert and nearly comatose, totally non-verbal and loquacious when facing eminent/anticipated death.
I’ve also seen such people turn like a flip of a coin, from active and interested to “halfway into Death’s door”.
I really can’t come up with a way one would navigate what to investigate, or how.
My experiences have all been reasonable. My own mother could have horrific attacks which appeared to be anxiety based, and was only administered potentially serious medications on the last day of her life.
Having been with her at the height of some of her anxiety events, even when she was no longer responding to any kind of communication, I welcomed calming medication on that last day with her, and was grateful that it was given.
In my most recent experience I did quite a lot research interfacing with religious perspectives, as my LO was very active in her pro-life faith. I found help there on her behalf.
I hope that your love and care for your mother will continue to guide you, however you choose to proceed, and that you both find peace.
We got a call Wed night that he was comatose and we all raced to the hospital, to find him sitting up in bed, eating a cup of soup and talking about his planned trip to Spain! We all sat around like idiots for a couple hours and he was almost manic in his behavior--very unsettling. The dr was there and said "He is just rallying. There is no way he can last more than 48 hrs at MOST with the fact he has almost no red blood cells, and his lungs are filling with fluid. This kind of behavior happens ALL THE TIME".
We all went home, only to be summoned back 6 hrs later to find him comatose and barely able to breathe. The change of 6 hrs was hard to believe, but the dr (who had spent the night with him) said that he was now actively dying and in distress. Asked if he could 'give him something to help calm his breathing'. Of course we said yes, and the DR! administered an enormous dose of what I can only assume was morphine. Dad settled down. He was unaware of us, of his surroundings, and was definitely not going to make it. Doc said he'd be on the floor and would come back to check on him in a half hour.
FIL passed quietly and peacefully within 15 minutes. I am very grateful we got the hour with him the night before he passed.
I feel sorry for you and your pain. Truly--there is NO financial upside to drs calling in Hospice. People feel that it's a mean, cruel thing to do to someone--and it's quite the opposite. And there is no 'pot of gold' at the end of a hospice situation. Once the patient has passed, they aren't making money from them. I don't mean to be unkind, but give this time and get some grief counseling.
I only shared my story b/c it did illustrate how caught off guard we were by FIL's sudden death, when he had acted like he always did when hospitalized--well fed and VERY chatty. We were not prepared for the sudden shift in his health.
((Hugs))
Sadly I think you may possibly fall into the group of family members who has a difficult time accepting the inevitability of death. I very much doubt your story that a Hospice entered your Mom's home and dosed a singing, dancing, laughing woman to her death, and that is really what you are suggesting.
None of us were present during the time your particular hospice cared for your Mom. I suggest you take your concerns to their own counselors. I think you may also want to consider the counseling of a Certified Licensed Social Worker in private practice who can help you work through the grief of this hard loss. It is known that many will stay in a state of trying to blame others for death as a way to prevent their having to move into and embrace the grief of final loss.
I thank all the powers that be for Hospice. As an RN my career I saw such suffering before we got Hospice here from across the pond, where it began. Such awful needless screaming suffering as you cannot imagine, and I assure you, had you witnessed that for your Mom the images would never leave you. It saddens me that I see Hospice now moving into the for-profit military industrial complex, offer less individualized care than once they did. Still I thank goodness they are there for us.
I wish you peace in your grieving and I hope you will seek help for yourself as you have had a great loss and you deserve help.
To ease your mind, I would have a doctor request the Hospice records and I would want them gone over by someone who has nothing to do with that Hospice. Could Mom have had an allergic reaction to the Ativan? I read where very rare that Morphine causes an allergic reaction and if it does, it maybe just a rash.
"Like most drugs, Ativan tablets and Ativan injections can cause an allergic reaction in some people. But this side effect wasn't reported in studies of Ativan injections. Symptoms can be mild or serious and can include a skin rash"
Talk to your Mom doctor who recommended Hospice. Ask why he felt Mom needed it at that point. How was Mom the day before she was dancing, talking and alert? Because what you are describing could be rallying. My GFs Dad had a heart attack and when I visited him he couldn't even stay awake to talk to me. Next day he is up and around joking with everyone and Doctor says he would send him home the next day. He died that night.
My experience with Hospice has always been a good one. My Dad was up and watching Football with my brothers on Thanksgiving. He was having a hard time talking but I guess rallied to enjoy that time with brothers. He was put to bed about 10pm with Mom sleeping on the couch beside him. She woke up at 6am to find he had passed. You need to do what you need to do and pray you find your answer.
Once the patient passes, Hospice is no longer being paid. Does it make sense that Hospice would want to accelerate that patient's passing?
There are cases where a patient graduated from Hospice and continued to live. Hospice takes one off of all their pills except for pills that provide comfort. Some times patients going into Hospice were taking way too many different pills, and once getting off many of the meds started to feel better.
I know when my days are numbered, I would be very angry if my family decided not to bring in Hospice to help me be more comfortable.
The memory of her dancing is a lovely one to treasure.
Grief will be your companion, in many forms, for a long while yet.