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Jeanniegibbs - i am reading that book Being Mortal which you recommend. In deed, a very good book with a new perspective on life and death.
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A person will die on the same time table whether they use Hospice or not. It all depends if you want your love one to spend their final days in terrible pain or in comfort. I vote for the comfort.
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Hi Rosie123, it brakes my heart to read about your experience, I am so very sorry. Unfortunately, there are too many outcomes like this that I have heard about. I lost my beautiful father the same way. Just 7 days before my fathers life was ended, he was at the Bowling Club, betting on the horses, shopping, visiting friends, still very active, in good spirits and enjoying his LIFE. He had only been diagnosed with small cell lung cancer 1 month prior. He kept telling me that he had no pain. A doctor I spoke to 3 days prior to his death told me that my father was no where near death, & that she had worked around cancer patients for more that 20 yrs. I was totally in shock when in 2 days he was gone, into a drug induced coma.
People think that they are going to these places to get care (like the word suggests, palliative CARE HOSPICE,
It is actually euthanasia and patients and families should be better informed. Palative care is great for people who are wanting to die, but there should be a choice. My father certainty wasn't ready to die and he was ripped off with his life. Cancer didn't kill him. He was killed by a drug induced coma. The same thing happened to my auntie and the family are still trying to deal with it. They visited her one day, she was eating laughing and cracking jokes and thought shed be going home in a week. The next day she was dead.
So yes, definitely loved ones death extremely rushed. I find it so hard to accept my father's death, as I should, but ten years later I am still riddled with greif & depression. I feel for anyone that has gone through this experience. Your certainly not alone.
Furthermore, I can not understand what all the fuss is about Euthanasia when they are already doing it on a daily basis and its all legal.
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My mother was old and dieing. Her thinking was fine. But She would go wild when given zanax or flexaril. She was staying with my sister and brother in law and they would give her these meds. Then call hospice. Hospice took her.they kept her in a drug coma. When she would start to
Wake they gave her more drugs.i stayed by her side till she died.i asked them to check for zanax or flexaril but they wouldn't. I think she was set up because my bro. In law was tired of her living with him and my sister. He didn't work and was angry at haveing her there. It makes me sick to think she was sent to death before her time.
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I often recommend the book "Being Mortal: Medicine and What Matters in the End" by Atul Gawande. Dr Gawande is a surgeon and both his father and mother were also doctors. The author has done a lot of research on different ways we care for our elders, and how the medical part of the process could be improved.

He describes his own father's end of life. His father knows that his condition is fatal and there is nothing more medicine can do for him. He has seen how this condition ends. He insists on going home from the hospital to die. He tells his son that he does not want to suffer. He gets his son to promise he will keep him out of pain. That means drugs (I think morphine, but I don't remember for sure). He gives the drug and his father sleeps. His mother is not on board with this. She wants her husband to be more alert. She says maybe if he had a little pain it would wake him up. The father tells the author that he wants to die in peace, and the only time he is at peace is when he sleeps.

This chapter reminded me of this particular thread. Some family members want to see their loved one at peace, and if that means asleep because of drugs, so be it. Other family members want their loved ones to be alert and responsive, even if that increases their pain.

I suggest this book to those who a struggling with hospice decisions. It gives another perspective.
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trapwhisk, please let us know how those lawsuits turn out.
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suzy0519
I know that this is a long time after your post. I just seen it tonight. I have a hospice story to tell also. My mother was diagnosed with a gleoblastoma, she did not have any symptoms that we knew of before September of 2017. She had taken several falls, her foot was turning out to the right when she walked, and she was having a memory problems, and she was having a hard time judging distance on the right side. When she was diagnosed it was so quick, then came the brain surgery, and rehabilitation, radiation and chemo, doing good for a while, then she started going downhill very, very, fast. We had to get hospice involved about 7 days before she passed away. I think they did try to make her comfortable but the same story as yours I didn't know what mixing the 2 medications adavan and morphine would do, but it rushed her death and to make a long story short they killed my mother faster than when she would have passed away. We are filing a lawsuit. very heartbroken and still grieving, even after 3 months. The took my precious beautiful mother away from us to soon. The nursing home that she was at for "Rehab" is also getting sued for wrongful death.
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I just wanted to say my mom died of liver cancer. It was painful for her and many nights at the hospital I would just go up and down the Hall begging for someone to give her morphine or Ativan. I tried to get her moved to hospice because she was not getting good care and her doctor refused to release her. My mother suffered with so much pain and it broke my heart. I wish I could've had hospice to help my mom. Now my husband's dad
and mother in law used hospice and it was great, they were so loving and his parents did not suffer. We just gave her pain meds as needed. Never overdrugged at all. They both died with dignity. God bless you all with your decisions on hospice.
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Vicky I am so sorry you are going through this. Not having seen you grandfather I can not suggest why the sudden decline. Hospice usually has orders that allow them to make medication adjustments,
I also don't know the circumstances surrounding his desire to get up. it is possible they felt he was going to become uncontrollable and hurt himself or others.

All of the being said his family can ask that the increases be reversed and see if he returns to his normal.

You have to make your concerns and fears known to those who are ordering grandfather's care. You have the absolute right to agree or decline any treatment. If the patient is likely to harm himself or others that will alter the decision making. But speak up even though it sounds as though your loved one has been on his final journey for some time and things can change in the blink of an eye.
Keep Grandfarther comfortable and be there for him. Keep talking to him and stroking his arm. he will know you are there in some sense. You can read to him, especially the bible if he has faith. Sing, play music so he does not feel alone.
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My grandfather who will be 90 in August was given 2weeks to live six weeks ago and until this past Monday was alert eating holding conversions with family members, on Monday he wanted to get up and yelled for someone to help him, hospice was there and increased his medication and now he is out of it, not responding, not eating, not doing anything just laying there, is it normal procedure for hospice to increase medication without anyone's permission. This is a difficult time for me and my family and maybe we are just looking for a reason why and don't want to face the reality
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Hospice killed my Mother, she was 90 and still knew everything, of course she wasn't in the best of health but as soon as we signed her up for hospice care they started the morphine which killed her. They don't take on patient to keep them alive for very long because it isn't profitable . If you sign the hospice papers you will be dead soon I can assure you. I totally agree with these other folk, my mother said I can hardly breath they are killing me and she was right. I feel guilty too. Hospice kills the elderly .
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Kimbrown, so sorry for the passing of your Mom. Apparently your Mom was placed in Hospice because there were signs that she wouldn't be around for another 6 months. Hospice wanted to make your Mom as comfortable as possible.

Please note similar amounts of morphine is also given to patients who have had serious surgery to help with the pain. I've had two such surgeries, and morphine was given to me. It did help with the pain.

The reason that Hospice had stopped Mom's eating and drinking was because her organs were shutting down. Otherwise food would just sit in the stomach as the stomach, and water would sit in the kidneys. That in itself would be painful.

Your Mom would have passed on the same time table whether she used Hospice or not. The question, would you rather have not had Hospice and see Mom in terrible pain, or that have seen her pass peaceably. For my own parents, I choose the latter.

I hope this gives you some peace.
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My mom died February 24 2018 she was in hospice my mom had a stroke 2 years ago she was paralyzed on her whole right side she got involved with hospice in October because she was sleeping alot and her doctor felt they could be there to give us help .in January they increased her Norco to 2 pills every 4 hours but that wasn't helping her she started moaning like she was in alot of pain so they put her on morphine on February 14th at first a low dosage then increasing 20 milligrams every 2 hours then increasing to 30 milligrams every hour they stopped her eating and drinking on Wednesday yesterday she died .I feel they killed my mom yes she wasn't getting better but they didn't have to give her all this medication .at the end she was in a coma her mouth was all swallon.
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My friend's dad is in the hospital - not the hospice section. He is 83 and suffers from CHF. Problem is he isn't eating/drinking but he wants to eat. The only thing my friend is allowed to give to him is a sponge around his lips. They say he will choke because he failed a swallow test. But my friend thinks he is starving. I see him getting weaker. Any suggestions?
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That too provided me with comfort when my mom passed- that she was now finally with my dad. He died in 1965 and she never remarried.
On her death cleaning out her stuff I found her wedding ring and now have it with me. I love looking at that ring and how small her finger was; it fits my pinky. She wore it for decades after his death.
So...they are together now after being apart for 48 years. He passed at age 44, her at 89.
Plus my mom had two of her sisters she was very close to; they too are all together now having many laughs as they were so funny together.
Yep I do miss my mother. But I know she still looks over me.
Happy Valentine’s Day mom! Love you lots!
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Happy Valentine's Day. It's my mother's birthday today. Every year while my father was alive, he purchased red roses for her. Though Mom passed away several weeks, I purchased red roses today for her room and silently wished her a Happy Birthday and that I'm so happy she's with her Valentine, my deceased father.  :-)
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My mother passed away on Hospice in late January of this year. I actually transferred her to a different Hospice due to poor customer service while she was in her benefit period. She was on this Hospice for one week and then I kicked them to the curb. Hospice is BIG time money maker and a very competitive business according to my mother's former PCP. He told me when he was in residency, it was not uncommon to see two or three different Hospice representatives - waiting outside one patient's hospital room to sign him up. Yep, it's true. Hospice is no different than any other business...You're not getting what you need for your loved - find a different Hospice. What was the poor customer service from the Hospice? No one picked up the phone when I called after business hours - at 7pm. I was P***D. I called again - at 7:30pm - and again at 8pm. STILL NO ONE PICKED UP. Mom desperately needed another medication for relief. It's a Medicare Hospice violation that no one picks up the phone - at any time of day. At 8:15pm, I called a different Hospice - a much, much larger one - and they arrived at our home promptly at 8am the next day. The paperwork transfer was done in ten minutes. I received Mom's medication in two hours. I was a pitbull with lipstick every time I had to get things done for my parents - I was CEO of my them because I'm an only child (no spouse, no support from friends) with no other blood relatives in the USA - and when I saw them suffer - Oh, Mighty...I let that provider know how unacceptable it was! I'm not intimated by any doctor or nurse - I have a brain - my undergrad degree is in biochemistry. For those of you that don't have a technical degree - it doesn't matter - listen to your gut - and if you see things are not right - then speak up to advocate for your loved one - hopefully, you don't have to transfer your loved one to a different Hospice - but don't be afraid to do it if you feel you're getting no where with the current staff. Ninety-nine percent of the Hospices are reasonable and will work with you. However, If you're getting pressured to not leave, this is a red flag and the answer is simple: It comes down to money and them wanting you're loved one's business. There are plenty of excellent Hospices out there.

If you don't like the medications being used - just tell Hospice to stop them. You're not required to accept any medications for your loved one...but do you want your loved one in pain until the actual death? For me, no way. In regards to morphine, I realize this is a very, very touchy subject. I'm very, VERY thankful for the morphine. Mom was dying - I wanted her to have whatever comfort measures necessary to ease the transition - and not just morphine - I'll take anything in liquid form!

In general, the body will die when it wants to die regardless of what medication is administered because so many things are happening at once - in the active dying process - things that can't be even be seen. Here's an example: You're loved one is bedridden. He is given morphine to ease the breathing difficulty. His breathing is getting worse, so more morphine is given. He dies with in hours. How do you know it was from the morphine and not from a massive blood clot/pulmonary embolism or a DVT that ended his life instantaneously? Would you go as far to order an autopsy to confirm the actual cause of death? For me, no, because my mother was suffering so much physically that I wished, prayed to The Universe/God - please give her something quick to end her suffering. Being bedridden puts a loved one at of developing a blood clot. Even "healthy" people who travel on airlines regularly or drive for hours on a weekly basis are recommended to wear compression stockings to try to prevent development of blood clots. Because of the opioid crisis, Hospices have to follow very strict guidelines on the pharmaceuticals to keep their license. Really, they do. If you suspect medications caused your loved ones death, then don't ruminate over this - contact a medical malpractice attorney immediately - so you can focus on your healing. He shouldn't be charging you anything and if he does - run - because there are plenty of med mal attorneys who will thoughtfully listen to what happened and retrieve the medical records - for free. If there is a case - he will make a handsome profit - trust me on this. My father's Stage 4 cancer was misdiagnosed over a two-year period and he sued both providers, so I know what I'm talking about. If there is no med mal case (or if there is one), then you should most definitely contact the State to look into what happened and this is free, too, because this is also part of your healing process. The State takes medical negligence complaints very seriously.

Again - there are many excellent Hospices - but there are a few that SHOULD NOT be in the Hospice business. Absolutely not. No way. Just trust your gut and do whatever you have to do to ease the suffering of your loved one - because at the end of life - no one wants to be pain and in anxiety - including you.
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Neemec101
I see you are a new poster and did not include any personal information. While everyone is made very welcome here this thread has caused a lot of hard feelings and anxiety and even anger at the accusation that have been made against Hospice and their nurses.
if you are a legitimate poster welcome but if you posted just to cause trouble please stop.
If you feel your mother was mistreated the people to take it up with are the Hospice directors if you suspect criminality the police, state board of health or a lawyer.
Everyone will be truly sorry for your pain so don't be upset by this post but if you read the entire thread you may better understand many peoples frustration.
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The same thing happened to my mother, I am still crying over it. Common sense. Morphine and all those heavy drugs that are out there will kill the person one organ at a time. Once addicted the person doesn't want to eat or do anything else. Their only desire is for the drug that will eventually put them in the grave.
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Your grandmother's family has a right to have exactly what happened during her time in hospice explained. Whichever person acted as her healthcare proxy or advocate should contact the hospice provider or director or manager and request a meeting to discuss what took place. I am sorry for your loss and hope that you will have all your questions answered.

You might want to edit your post and remove your email address. People can contact you through your profile if they want to do so in private.
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My grandmother died in Jan 31 in hospice. She was there only 3 days and they gave her medicine that had her leaned over like she was on morphine. She specifically told me to bring her pain pills, but the hospice decided they would give her some trial drug. She did not consent this not want to be or mind altering drugs. By the 2nd day n hospice she told me the meds to bring even as she was slumped and out if it, then on day 3 I called her and as she was talking to me, I could hear the doctors say "nd Robinson you're throwing up." They took the phone from her and said the doctors are with her. I immediately drove there and she was dead. How could she be on the phone with me and throwing up and not even know it. Something is not right about that. Something they gave her made her unconscious while she was conscious.
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Hospice has been the answer for my mom. Sometimes keeping your loved one out of the hospital is a top priority, especially when they have dementia. It is like hell for them. I promised my mom I would never take her back after the last visit and I have been able to keep that promise. She is dying now peacefully in her own bed in her home surrounded by loved ones. She is 90 years old and has lived a full and beautiful iife.
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Definitely, Shane. My mom has been on hospice for 11 months now and we have needed to make many changes, additions, etc to keep that balance. I definitely would not allow my mom to sit in pain... Each of is makes the best decisions we can for our LO and I think others opinions are fine, but their judgements should not be used to hurt those doing the best they can. I also think if you choose to be the caregiver making the decisions, you have to stand up and say no sometimes. I had to fight with an er doctor once and tell him absolutely not to keeping my mom, and no to pumping any more drugs into her than he already had... Finally forced him to call her neurologist who backed me up. We have to say no sometimes.
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Well said, Grammyteacher. On home hospice you are in control of the doses. No one should allow any health care provider to proceed to treat their loved ones if that provider will not listen nor discuss the family’s concerns.
That said, it is the responsibility of the family member or CG to give permission to hospice- an informed consent needs to be signed prior to hospice service being initiated. It is a delicate balance between medicating enough or overmedicating. No provider can predict the body’s response to any medication. The dying process is complex. Often a dose may be sufficient on one day but given the same dose the next can be too much due to the body’s natural progression into liver or kidney failure that happens with death. Electrolyte changes can occur. Metabolism changes occur.
Hospice is not an exact science. Once you have checked a blood pressure or pulse you need to react to it- which is probably why hospice patients vital signs aren’t checked more frequently.
Hospice is not ordered arbitrarily nor without consult between more than one provider. Usually the hospice patient is documented as being terminally ill determined by medical testing and physician evaluation. The person is determined to be dying and comfort measures are recommended.
I do believe, and this is from my 35+ years of being a RN, that families wait too long to make the decision to enroll their loved one in hospice thus the patient does appear to die faster. I have seen this so many times.
I have also wondered why we can put our pets down with dignity and peace but allow our loved ones to suffer unnecessarily at the end of their life due to the family’s comfort level & not wanting to let go. That’s a bit selfish as like it or not, all of us will die. It’s a natural process.
Prolife’s opinion doesn’t bother me. He/she has the right to feel and express their opinions on hospice. Is it a perfect process? No. Is anything in medicine always perfect? No.
Sure there are episodes of misuse and medication overdose or hospice staff gone awry due to inexperience. Unfortunately perfection is not guaranteed anywhere.
I did choose hospice for my mom when she was end stage, dying, post stroke. Was she overmedicated? I don’t think so- the night she passed (I was asleep in the empty bed at her NH) the nurse spoke with me after and said she did come in to check on my mom and to give her a dose of medication but the nurse stated she did not feel like a dose was necessary at that moment as she assessed my mom not to be in discomfort. So...every hospice provider’s objective is not to automatically overmedicate.
I would choose hospice again for a dying loved one.
Prolife in my opinion should get credit for looking into hospice abuse. I do not like the fact that prolife uses a broad brush to paint all hospice staff as angels of death because IMO they are not. I don’t like the fear he is injecting into a very delicate and personal decision. But nonetheless entering hospice is the kind of decision that should be made weighing both sides, so that’s fine with me. Just please don’t use fear as a tool to block a needed service that allows people to die with dignity and in comfort.
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I just want to say what a blessing this site has been to me with my mom's long drawn out illness. Please don't attack others for their questions and concerns. We need to remember that we were all in a lot of pain which can cause a lot of anxiety and feeling of helplessness. Kindness and respect are the only things that should be on this site dogabone
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********************

Prolife is a TROLL who has infested many threads on this forum in order to manipulate people's emotions for the purpose of (in his/her mind) furthering his/her personal political agenda.

If Prolife were truly interested in doing something about this issue, he/she would be busy lobbying legislators and other decision-makers, and wouldn't have the time to post repetitively in a single forum.

Prolife is a big faker who goes around making up new accounts (sockpuppets) on AgingCare.com just to troll us all with more obviously fake "testimonies."

Prolife is clearly only interested in provoking reactions and disrupting conversations, and is probably enjoying him/herself very much.

Prolife is obviously a very sad and lonely person with nothing better to do than troll caregivers online. 

I urge everyone to remember this when you decide whether or not to engage.

********************

Please feel free to copy and paste this message wherever/whenever you see Prolife posting, so as to warn others who may get sucked in by his/her trolling.
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(((((lokiloki)))))

I've spent years second-guessing myself and "what-if"-ing, after losing my dad and my stepmom, and several beloved pets for that matter.  I do understand. 
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Dorianne..thank you so much..I really appreciate it..my nightmare is..did I do enough ..and what could,I do ..so many unknowns....was their sudden rush to drugs wrong..was he really dead..since his eyes were pinpoint ..not dialated..should I have rushed him to the hospital..ie..911..to hydrate..(I have seen my old dogs live for months after receiving it..and of course they were old..he was sick..so)..and Re diagnose him etc..his eyes were pre jaundice...but ..seems now from recall..theynhad been that way for months..so white..with a bit of yellow at the base..so my sorrow is of so many what ifs...and being so tired and sleepy..and having inexperienced home hospice nurse and nurse practitioner..not that they meant to do him in..just that..well..they were not really trained in these things..as I was not..anyway..your though means a lot to me..in time..it will be a distant sad memory..life..death..never easy..never fair..and many times..so many unknowns..we can only do what we can do..
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I am surprised by much of this string. My mom is on Hospice, but lives in my home. If I don't like the way she reacts to a med, I don't give it to her and tell them so. They have never pressured me to continue anything I didn't want to give her. 

My mom has stage 7 Alzheimer's and while the hospice did bring morphine in the start up kit, I don't give it to her. She is not in pain so why would I? You need to monitor and control the situation. Why would you blindly follow any plan you didn't agree with? Do your homework and then decide what is best. 

Mom has been on hospice for 11 months now. I thought they might kick her off because she is still with us and doing as well as can be expected for where she is in the progression of the disease. They say that they will keep helping as long as they can within Medicare guidelines. I love our hospice regulars, the CNA, nurse, social worker and doctor. They all agree with me...I do not want to do anything that will force my mom's failing mind, and therefore her body, to stay on this Earth any longer than it will....I also don't want to force it to leave any earlier than it will. Hospice has been so helpful to have involved as I go through this process with her. And for the record.... She may be here a few years or a few weeks.... When the Lord decides, she will leave.
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Also to add, for lokiloki: I am sorry if my post felt insulting to you. It was not my intent to insult you, and I apologize for making you feel that way.  My post on chemtrails and such was actually meant for the purpose of mocking Prolife.  And I shouldn't have gotten flippant at your reply, either. 
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