Did Hospice rush your loved ones death?

(((((((Pam))))) - that is about as good as a very difficult time gets. My son went very peacefully under totally different circumstances, but it was a comfort.

Shortly before her death, my 103 grandmother came home after a quick succession of hospitalizations, contracted C-diff along the way, and it all took her down from an otherwise physically healthy centenarian... to losing 30 lbs in under 2 months, and all the things then that start to happen when the body can no longer sustain itself and is demising.

My only real input here is that - NO, the hospice nurses didn't rush my grandmother's death at all. I was able to take her home for the last 2 weeks of her life, and largely tended to her day and night by myself, her hospice pain meds were never used, and she passed during the night... that morning, hospice was called in to the house, and the nurse remarked she was very surprised my grandmother passed as quickly as she did.

So, no... not rushed, not meddled with, not anything. Hospice was on hand, but no one ever administered meds or "interfered" in any way. That was my experience.

My Mama has benefitted from Hospice as well. as have I. we have had a few miscommunications along the way, but both sides (them and me) were open about all of it and have continued smooth sailing. Our Hospice immediately got everything we might need so it would be on hand but thus far, none of it has been necessary, other than a couple of times when she first came home and she appeared to be grimacing and a tad and I do mean tad of morphine was given and that seemed to work very well for her comfort level. My Mama is, at present, doing very very well. She has even begun to communicate with us like she used to do. Today has been excellent and Mama is so happy. I am so thankful. I don't know what our future holds...well, I know we are all leaving this earth one way or other, but, Mama is really doing well under the watchful eye of Hospice....they have instructed me on different things available in the event they become necessary but Mama has never taken medicine and so I do not give it unless absolutely needed. Our nurse said that she is amazed at how well Mama is doing....we all are...and I am so very thankful to have them... When my Daddy passed, some 18 years ago, we had home health, but never actually were "signed into" hospice. nonetheless, he passed at home, very quietly surrounded by his family....I wish we had the morphine back then, it might have been more comfortable, but he went very quickly and seemed to have drifted into a more comatose state and did not indicate discomfort. My heart goes out to each of you on this thread. Losing our loved ones is a painful process, even talking about it can bring back so much emotion and pain...It's good we can be here for one another.

Pam, I am so glad that the inevitable was made as comfortable as it could be for your daughter and for those who loved her.

Pam, thanks for telling your daughter's story. Hospice is a blessing.

Pam that is a wonderful story I had wondered if you all made it to the Outer Banks. your daughter was very blessed to have such a wonderful mother.

I have to say yes, I believe hospice rushed my mother's death three weeks ago. And I believe the hospital she was in rushed my sisters and I into thinking she was ready for hospice by administering morphine which took her from a critically ill but alert patient to a living corpse overnight. The only good thing I have to say about hospice is that it empowered me to reject the morphine and later the dilaudid the hospice nurses relentlessly and robotically tried to force on her. And I do mean relentlessly.

It also gave me a wonderful room in the hospital’s palliative care unit in the where I could access unlimited little pots of thickened water. After we moved into this room I sat by my mother’s side and patiently spoon fed her thickened fluids for four or five hours until she finally became rehydrated. With water and without morphine she came back to life. She ate small amounts of food and answered questions appropriately. Because she was in a state of pharmaceutically induced encephalopathy she could not fully track conversations but she didn’t look like a corpse any more. She also stopped moaning once she was rehydrated and the morphine was discontinued.

Nothing any doctor, any nurse, any professional anywhere can tell me will ever persuade me that it is humanitarian to give morphine instead of water to a patient who can still swallow. It was clear that the minute I signed the hospice papers that I reduced my mom to “living corpse” status. The change shocked me. I was told that we could have anything needed for comfort but when her jaw began to horribly swell, completely disfiguring her lovely face, it was over six hours before the hospice nurse came. The staff nurses told me they could do nothing but give her morphine, dilaudid, and Ativan – which she emphatically rejected. It was the worst night of my life. The only thing that prevented me from withdrawing her from hospice was my mom herself, who by then had the seen a beautiful destination and did not want anything delaying her arrival there. Including morphine, dilaudid, and Ativan. She wanted to meet her maker undrugged and I was determined to keep her undrugged. But what a battle it was.

Later a non-hospice staff nurse at the nursing home validated my Herculean efforts to honor my mother’s wishes by confiding that morphine causes patients to have “bad dreams” and moan and toss. When I told another staff nurse that I believed that the hospice nurse deliberately delayed arriving because they wanted my mom to die ASAP she said it was true – she had seen it before.

This is a long entry and I take the time to write it because this is a strange new world we live and die in. I cannot speak for patients who are in agonizing pain, but for patients like my mom, and suzy05’s, who are not in pain, there is no justification for morphine or other opiates. If I had it to do over again I would never sign hospice papers for my mom. There is a distinction between not taking heroic measures to prevent death and expediting it with sanctioned drugs. Anyone who thinks that hospice care isn’t being guided by corporate principles needs to follow the money.

Dear tosmartolate I can only offer you comfort for the loss of your beloved mother. You and she had a horrible experience with the hospice your mother was admitted to.
As you conclude "follow the money".
I am assuming that this hospice was "for profit" Their one objective is to make money and if this is sucessful their top executives recieve the same over inflated pay checks and bonuses that executes in welknown major corporations enjoy. Horrible, sad and any other way you care to describe it but true. There they sit in the luxury of their top floor office overlooking the beautiful ocean planning their next corporate trip to a warmer climate next January. While the top brass enjoys the perks of sucess the worker bees (nurse) are not exceptionally well paid and may have an excessive patient load which may delay their visits.
All that being said, they are able to attract many patients with the facilities they are able to offer. Most people are unaware what hospice means and at the time they consider it they are dealing with a loved one's approaching death so are unable to do the necessary research.
All the medications you describe are commonly used in hospice care and for very good reasons. You do not share what your mother was dying from and why her jaw swelled so suddenly. However she was in a facility within a hospital and her regular care was being administered by nurses in the facility. Such an emergent condition would appear to merit faster action and not waiting six hours for the arrival of a hospice nurse. In her defense a hospice nurse has to triage her calls and a patient with acess to care within a facility would not be as urgent as a man who has become unmaneable and is beating up his 89 year old wife.
I can not say whether the intention was to speed your mother's death or not and am very sorry you feel so badly about the treatment your mother recieved. As with everyone else nurses also have their personal views on subjects and the nurse you spoke to may have had strong objections to certain treatments and had previous bad experiences with the practices of this particular hospice.
Finally in closing there is a very big difference between a for profit or not for profit hospice. For profit is a business just like any other and may be good or bad. A not for profit is a registered charity and must follow the rules just as any other not for profit. As most of the patients are Medicare or Medicaid the hospice has to follow the regulations set out by these two entities. The level of renumeration provided by a not for profit is far lower at all levels therefor the nurses etc attracted to this work are most interested in providing the kind of loving care they would want for their own loved one.
As a RN who spent the last ten years of a long career in nursing as a hospice nurse I can only say how sorry I am that you are so distressed by the way your mother's life ended. Try and take comfort in the fact that she had her loving family at her side and was ready to meet the Lord. Blessings

It's hard for me to relate to your concerns because of my own thoughts and plans for ME near the end. I'll take your dad's recipe, frankly.

It's been my experience that, when pain relief has been prescribed by mom's doctor, it's liberally offered: "Are you in any pain?" Here comes a pain pill. Perhaps it was the same with your dad.

You said it all to your dad, yes? He's in a better place, yes? Let it go is my advice to you. Hospice workers are caring and compassionate people. Your dad died peacefully. That you weren't able to say a final goodbye, in the scheme of things, means little. He knew you loved him. He knew he was dying. (Even if he DIDN'T know, he STILL knew.)

One's body does the best with what it has. It's a remarkable machine. Even when death is inevitable, one's body will fight-fight-fight. One minute he was able to handle the toxins his liver couldn't metabolize, the very next minute his body was on overload. Day. Night.

Your dad wasn't eating BEFORE he went into hospice. His body was giving up the fight. Again, he went peacefully and pain-free. Be thankful and let it go.

MIL just passed this morning and I was asking the opposite question. It was obvious she would not get better from the stroke and heart attack she had a week ago. It was an exhausting week for everybody. MIL had advance directives of no heroics, tube feeding, etc. She died on her terms and my ex had the courage to carry them out. It seemed to take so long, I wondered why can't they do something to speed this up.

My mother went on hospice, in a nursing home, in April of this year. She was discharged from hospice care in July, because she had improved so much that she was no longer considered likely to die in the next few months.

The NH took good care of her. Hospice added another layer of attention and special care. Her 4 daughters made 10 to 12 visits each week, on all shifts.

I believe that every bit of care and attention contributed to her quality of life. As it turned out, I think it all contributed to the length of her life, also. Hospice care certainly did not shorten her life.

Veronica91 thank you for your well thought-out response. My mom’s case was so complex I was striving for brevity in answering the question whether I thought hospice rushed my mom’s demise. She was medically fragile with multiple health problems: CHF, seizure disorder, diabetes, and anemia. She had been on death’s doorstep many times before and we, her daughters, pulled her back each time because we learned early on that she had to have an advocate there at the hospital by her side every time she landed there. She turned 86 on July 4th and we knew we were on borrowed time with her, time we had bought by being vigilant with her care and multiple medications. We did so because she was vitally engaged in life: loving, fun, alert, and highly interactive. For all her infirmities, she never had pain. None.

Her three daughters who made the hospice decision jointly felt like we knew what hospice care would be, as my oldest sister pioneered the field, working as a hospice RN in the ‘80s. I greatly admired her dedication to the field and what it was doing. The emphasis back then seemed to be more about dying with dignity and avoiding “heroic measures” and less about medicating the dying into senselessness.

The hospital that had saved mom’s life many times is supposedly a non-profit. It used to be a Presbyterian hospital with a great reputation. They are now part of a conglomerate that offers hospice care and somehow manages to claim non-profit status, but I know what corporate smells like when I smell it. I agree that those in the trenches don’t profit like shareholders but virtually every single hospice employee I met was robotic and determined to drug my mom. Relentlessly determined. She never complained of pain. Not once. When I told the nurses she was not in pain they never wavered from their insistence that they needed to manage her pain. When asked, they could not support their claim she was in pain and never even tried to. I know corporate programming when I see it.

And I know bottom line concerns when I see them. No medical facility anywhere is so sufficiently staffed that a paid employee could sit by my mom’s side and spoon feed her the water she needed to stay hydrated after all the Lasix she was given. It is much more expedient to keep dying patients so drugged they can’t ask or cry out for water. They are going to die a lot sooner if they are not given water. That’s just a fact.

I was by mom’s side 24/7 to respond to her every need, so there was no need to keep her drugged to relieve staff responsibilities. She was not crying out or fitful. The only motivation that the conglomerate nurses could possibly have had to force opiates on her was to expedite her dying, and the only reason for that has to be financial. I’m sorry, but it’s time the public wakes up to the fact that medicine – and now dying – is big business. With hospice care, sure, the facilities, conglomerates, and pharmaceutical companies make more money the longer the patient stays alive…but who is picking up the tab? That’s who is calling the shots.

Instead of keeping mom at the conglomerate hospital with the nice room, we returned my mom to her nursing home where she was beloved and well cared for. Because of the 4th of July holiday we were never given hospice papers to sign at the hospital, although we verbally agreed to use the hospice program offered by the hospital’s conglomerate who would “manage” her hospice care at the nursing home. I did not understand that I was agreeing to have ALL of my mom's medical decisions made by a nurse who was not on-site and that no other nurse or doctor could evaluate her for non-hospice care. We will never know what caused the swelling in my mom’s jaw. The hospice nurse never looked in her mouth or palpated her neck. She only offered opiates or Ativan.

Morphine is a poison that destroys lives across the planet every day. Just because the dying can’t articulate what it is doing to them doesn’t mean that they want it. I think in many cases it is given because it is easier on the living…and easier on the bottom line. I'm not saying it shouldn't be administered to those in pain and those who ask for it, but I am saying that there needs to be much more public dialogue about this so families in my position can make more informed decisions.

2Smart, thank you for sharing a frank, insightful and informative look at the corporate aspect of hospice "care". Your experience with hidden clauses in documentation is very helpful; hospitals shove consent forms in front of patients, with nonmedical staff often saying "it's just the consent", without the basic common courtesy of allowing patients to read, then become annoyed with they're told I won't sign until I've read everything.

I am sorry that your hospice experience was so regimented and drug oriented, but it doesn't surprise me, and I'm appreciative of the time you took to provide this caution.

My daughter was on Hospice, and I knew full well she was no longer going to receive anything that would help her Leukemia. She lasted a month. I could not have done this without the Morphine. It made it easier for her to breathe, it made her more relaxed and less anxious. The last day we needed Haldol too, because those last few hours are not pretty.

I, too, have been haunted by the hospice care for my mom who died in April. She went into a regular hospital with a simple urinary tract infection but, due to toxic amounts of Digoxin given to her, she had a massive stroke and then her kidneys began shutting down and fluid built up in her lungs. She required heavy oxygen. The hospital could no longer do much for her as she had signed a DNR. She was then referred to hospice. She wasn't able to speak well but upon arriving at hospice by ambulance, she kept saying "home, home". I knew she wanted to go home but the AL facility where she lived would not let her undergo hospice there (could have no tubes). She was eating, drinking and able to understand and converse a little when she entered hospice but the heavy medication soon began. She only lasted five days. My sister feels I, as her POA, should have moved her back to a regular hospital but I felt I should honor mom's wishes. My last memory of her is of her dead body, mouth and one eye open. I see this every night in my dreams. No, I would not do hospice again. I would leave her in the hospital until everything possible was done. Then, turn off the respirator, in it came to that.

Losing a loved one is never easy. I have witnessed death without hospice and with hospice when severe pain is involved. Hospice gets my vote every time. We would all love for death to come gently in the night during sleep but that is seldom the case. You have to take comfort in knowing you did the best you could.

The ones second guessing you have not walked in your shoes or shouldered the responsibility. Do not allow their words to linger on your mind or heart! God bless!

Dogabone, this isn't your loved one. And though hospice is a good thing, it is NOT perfect and can make mistakes like everyone else. Can we indeed hasten the death? Absolutely. Every business in healthcare is under-staffed and under-paid and only has so much time. Plus, the staff, at times, go by the textbook answers to which they have been trained---but like every medication, different people have different reactions to them, at times---so mistakes can be made. Lay off Dogabone. She has a right to voice her concern.

I don't feel like she was bad-mouthing hospice...she was simply asking if they could have been wrong----and, anyone human can be wrong sometime. But, she went by the best advice she felt she had at the time, so I don't think she should feel guilty in any way. She did what she felt was best at the time for her loved one....and no one can do more than that.

Katie-
You did the right thing, and hopefully you will come to recognize that. You honored Mom's wishes, and did what was required. That takes a strong person and a tremendous amount of courage. You did good!

I think we all probably really agree here. This is just one of the most difficult situations we will ever face, and we all struggle with it. So, we all do the very best we can with the information we have and are given. So, no one should ever feel guilty. We should be content knowing we were all there for the person we loved. I think we all agree with that and can live at peace with that.

KatieKat brings up a a good point in her post that helped me. When we signed up for hospice care, I thought that meant that no heroic measures would be taken to keep my mom artificially alive, like intubation, compressions, shocks, or feeding tubes. She never quite agreed to be a DNR but agreed she didn't want those measures taken. So it came as a shock to learn, belatedly, that signing hospice care in effect was consigning her to the earliest death possible. While I didn't want to keep her artificially alive I didn't want to artificially induce death either. I know lots of other people out there are going to be under the same misunderstanding and I want to do whatever I can to help them make informed decision. In our efforts to comfort those who, like me, remain troubled by our hospice decision, we must not try to silence our pain with platitudes. By sharing our pain we are hoping others will be spared it.

Wish I knew about Hospice when Dad had liver cancer. That was tough. He was tough, he took nothing, He tried different things, chemo, homeopathic treatments...You don't come back from liver cancer. A friend told me that. Dad was a health nut. Glad you found hospice, glad hospice helped your family out. Suffering is not fun, and with cancer you do suffer. You make peace, if you want to,... Making peace and let bygones be bygones...Amen

I totally understand where your coming from. Hopsice did the same with my mother 2 months ago, and I have trouble sleeping at night as the entire situation continues to play on my mind on how quickly her life ended. She too had liver cancer metastasized from her breast, but she walked into the hospital coherent with vomitting and diarrhea from her chemotherapy drugs. She had a very small brain lesion. I have spoken with several nurses since this all happened, who don't get what happened either. They have asked why she wasn't given a steriod for edema and hydration because of the vomitting and diarrhea. Why not try and stop the chemo drugs, hydrate her and wait to see how her body responds instead of putting her into a coma with the use of ativan, morphine and did I mention 2 antipsyhotic drugs. Our family is heart sick over allowing her to go this way. We feel hospice pushed us in this direction by administering the adivan and morphine. Its a shame and I know this will be a lifelong struggle to overcome the loss of our dear mother this way.

To posters who are questioning hospice actions and motives when caring for their DYING loved ones, I can only shake my head.

If people don't want their dying loved ones shepherded gently and safely into "that good night," why are they putting them in a hospice in the first place?

If you want them to go kicking and screaming and flailing at the inevitable -- afraid and conscious and in pain, just keep them at home . . . keep rushing them to the ER for life-saving treatment and call it a day.

I would very much appreciate some advice, I'm really at the end of my tether. I made so many mistakes and just cant take it anymore.

My mother who was 64yrs, stage iv liver & bone. One of the reasons it went to stage 4 so quickly was because the doctor stopped her annual scans after 5 years of her last diagnosis (stage 2) . That was my first big mistake, for not talking to her in enough detail to have known that earlier (and the fact that i could have afforded private healthcare for her and they would have continued the annual scans and would have caught the cancer earlier.

Second mistake, after taking Taxotere chemo that only partially worked the Oncologist suggested Xeloda. We decided not to do that because of here sever stomach pains we were concerned that the Xeloda tablet would have given her more pain. Big mistake as I know am pretty sure that the stomach pain was due to constipation due to liquid morphine.

So, after loosing alot of weight the oncologist said no more treatment. She went to the hospice but the doctor expected her to be out in a few days, she was dehydrated and hadnt been eating but he gave an IV and expected her to leave after some nourishment.

Final big mistake, she reached the point where she would not or could not take the oral morphine (she turned her head away) the nurse then suggested giving her an injection of morphine. 10- 15 minutes later her breathing started to increase rapidly and then she stopped breathing. The nurses would not revive her as someone else in the family agreed with the do not resuscitate. I asked the hospice doctor if the morphine hurried her passing. He said he hadnt come across of that happening before. I then look online and it seems many people have had a similar experience.

I know this world can be a horrible place and we have been relatively lucky in life but i just cant handle this. I can no longer do anything and know that the mistakes and selfishness has partially lead to this situation.

Id really appreciate any thoughts on the morphine part (bearing in mind she was on oral morphine for a while but had never had an injection of morphine before).
Appreciate any thoughts.

yes maggie marshal, i wish i did send her to the ER instead. Another big mistake. It was the district nurse that insisted the hospice and a few days after arriving it was over.

Edward, how recently did your Mom pass? It is natural to think more should have/could have been done. Mom was helped to make the best possible decisions with the information available. Liquid vs oral morphine I imagine there could be differences in a body reaction to it but I do not know anything about that. I know this is hard for you. I can tell you, I am 60, that I would not want to be rescesitated if I were as sick as your mother is. The most compassionate thing to do is to let her go.

Edward, I'm so sorry for the loss of your dear Mother. Please, oh please stop beating yourself up. You did the best you knew how with the knowledge that you had at the time. Your mom had advanced cancer and was in pain. Now she's at peace, and would want you to be as well. If you find yourself unable to move on, if you find yourself unable to concentrate at work or enjoy other activities, it's time to seek out some professional advice, which can work worlds of good. Be well, my friend.

One of the things I think many of us struggle with is not wanting to give up. I've come to the conclusion that I have a 100% fatal condition, life. If the natural, unaided conclusion is within a 6 month window, it's ok if I pass a few days,weeks, months earlier if we are fighting my pain and death is a side effect. My mthr is on the short road now, and the last thing I want her do to is suffer. Yes, she could have had many more years without her cancer and complications, but she won't. I'd rather her have good life satisfaction now on hospice, with all their kindness and medicines, than to suffer through round after round of chemo and the side effects. She lobbied her government for hospice access in the 70's and now she is the happy beneficiary of their work. They are keeping her pain free, even with broken bones (which are healing well). She is so happy with her hospice care, and I am as well. If she passes in the night because her body reacts poorly to a pain drug, that is ok - she will pass peacefully, not fighting and afraid.