I am starting a new post because the previous one on "death hastened by hospice" has so many replies. Do people expect medical euthanasia when they accept hospice? Does hospice staff aim for 24/7 sleep using sedating meds? When did this become the standard of care? When we call hospice should we be prepared to have our loved one be medicated heavily and die soon? Why is the word "comfortable" left so open to interpretation? Why is "agitated" as minor as slight tossing and turning during sleep? What has happened to hospice?
I thought of him as a thing in too tight pants.
And when someone visits this thread, that they would read the all 121 postings to gain a perspective as to why at times so many of us are frustrated with the dialog. It is ok to be hard on your own facts, but when scientific facts are given, I don't understand the challenge.
It's like the clear sky is blue, but someone will believe the sky is green, thus every one sees the same green sky. Science says otherwise.
Hospice gives 5 mg to 15 mg of morphine, no different than the amount given to a patient who had major surgery. I had morphine numerous times. To actually kill a person, the morphine would need to be 200 mg. Again, this is science. And note that morphine is a regulated drug, every pharmacy and every hospital and every Hospice group has to account for every single mg.
Criticism, w/o a solution and/or action, isn't going to solve a problem.
Thanks for ruining what, I thought, would be a place for sharing ideas and thoughts about a serious situation into fodder for your amusement. My MIL's medical records already show how serious this issue is, I don't need to participate in a non-discuss with a bunch of childish bullies. Enjoy your life and pray you never need Hospice care when you are elderly. What I've learned over the last 9 or 10 months is that I will never allow my mother to enter any Hospice type care. I will find a way to care for her myself before that happens. (She's a healthy, independent, 86 years young right now.) Neither my husband nor myself will succumb to their ways either. Believe it or not, it does happen.
Thank you, Heather10, for your comments in my defense. I really appreciated that, but I cannot participate in a forum that allows this type of childish behavior. I'm sorry there are so many who share the same experience as we did, and I pray that one day we find justice for our loved ones taken before their time.
The joking posts were not about hospice. They were not about euthanasia. They were poking fun at the topic of computer trolls. And humor is an acceptable way of trying to reduce tensions on a controversial thread. Not always successful, of course, but acceptable.
The same nurse was assigned to any patients who elected to use her hospice employer in the nursing home my father lived in. She made my life hell. I had signed the MOLST and was quite well informed. She balked at treating him for things that the MOLST agreement spelled out. Her mode was to quickly sedate him with Trazadone after asking him at the first meeting if he was sleeping well enough. He was withdrawn almost immediately, and the hospice nurse would not address my concerns. After two weeks, he told me he thought they were giving him something that made him not care. I had to fight to get him Ativan, a drug he tolerated much better. He only needed .25 mg at bedtime. She did many other things, like suggesting I perhaps did not want him in hospice at that point in time. His heart gave out, 6 weeks into his hospice enrollment. He died peacefully at the end of 2017, without the need for the hospice provider to be called. I was grateful I did not have to be around that nurse at the time of his death.
It is disturbing to read so many judgmental responses to Kathy. It seemed to me that there are hospice providers who don’t take enough action to monitor some of their employees. I believed my hospice nurse had been allowed to operate in a vacuum for far too long. I took action after my father’s death and alerted the CEO of her hospice company about my experience. They were very concerned and addressed it to my satisfaction. But abuses do happen.
Debbie1955
I get how stressful these EOL issues are! My mom was hospice eligible for two full years before my POA brother would sign for it. Only after she fell and started to become agitated and clearly in pain was J able to convince him hat mom no longer the quality of life she needed to recover.
I'm so sorry for your loss. Hospice is never an easy decision.
After he died and I talked with the hospice organization, they asked me why I didn't call and ask for someone different. I told them I did not think I had that option because of how the system between the nursing home and their organization was set up. The nurse they provided had been in charge of their account at the nursing home for many years. The hospice organization said they did like to centralize things that way.
The nursing home staff got me what I needed for my dad, I learned to go directly to them for medical guidance because I did not trust the hospice provider. To be quite frank, I was flying by the seat of my pants. He had many emotional needs and all I wanted to do was protect him. At a time of both our lives when we needed compassion and support, I had to put all my energy into him. I had truly counted on hospice to give me a little TLC, like their website promised. It was a very lonely and stressful journey, made more difficult by that nurse. I felt like she had the power to disqualify him from hospice, since she was very quick in the beginning to suggest to me that maybe I didn't want my dad in hospice. She even had her social worker call me and suggest the same thing. Thanks for your compassion, Barb.
Since my communication with the CEO of the hospice organization and the nursing home DON after his death, I hope both parties will see there needs to be more nursing oversight to their personnel arrangements.
Debbie1955
I want to mention something for consideration, not as a criticism of you, and not defending the Hospice folks.
Were you ambivalent about having your dad on Hospice? I know I was. My mom was 94 and had multiple heart and lung issues. It seemed to all of us that she was fading last summer, but in a very, very slow way. And as I mentioned, she had been deemed eligible for hospice 2 full years prior to last summer, because her Chf was getting worse and would be the cause of her death, absent something else going wrong.
Death from ChF is essentially drowning, gasping for air. I was determined to avoid that and mom made me promise years ago that she would not suffer a painful, frightening death.
So mom fell in the NH while being assisted by a familiar aide. The aide asked her to hold onto the grab bar, per protocol. My mom had always been able to follow this instruction. This time, mom didn't and when the aide went to pull up mom's pant, she fell against the tile wall, and fell down, smashing her face and breaking her wrist.,
After atrip to ER, put to bed, we expected mom to bounce back, as she had many, many times before. But she refused to get out of bed, forcefully shaking her head no. She developed pneumonia, which was treated. But she still wouldn't get up.
Then came the silent crying and the look of terror on her face, eyes highly shut. She didn't respond to any of our reasurances or questions. It looked to me that she was in pain perhaps, so they doubled her pain meds with no effect.
Okay, should I have said at that point, well , if we just leave her, maybe she'll heal and get over this, too?
But I could not bear to think that she was in some terrible pain, or having mortal fear of something. So we asked for hospice to come in. The morphine gave her immediate relief of whatever awful thing was torturing her. Her breathing became less ragged. I remembered thinking, good, maybe if she can get some rest, she'll get over the hump and sit up again.
Yes, I WAS ambivalent about hospice. I wasn't resolved that my mom's death was inevitable. It would have been a good thing, I think if someone had said to me at that point, Barbara, do you really want your mom on Hospice? If we can get the doctors to prescribe the same morphine, do you really need the rest of the supports? Because we didn't. She was in a NH, not at home. The staff knew what they were doing. She already had an alternating air pressure mattress ( we had to refuse the one Hospice wanted to supply because it would have meant moving her, which we weren't willing to risk)
Is it possible that THAT is what was being asked of you, maybe in a tone that annoyed you or made you fearful, or that you felt questioned or judged? It's a real question, because I still feel residual guilt that I didn't give my mom enough time to recover from her injuries. Maybe having talked it out then would have helped.
Again Debbie, I'm so sorry for your loss. I hope you keep posting here and on other threads. You are sensitive and articulate. Be well.
Actually, I was not ambivalent about hospice care. My dad had CHF for 13 years, was diabetic for a long time. I was his sole health care advocate, (15 years) meaning he was a stubborn, crusty old guy with an idea he could beat anything. Mind over matter, he would say. So, I had a very good medical education about his situation from years of being his “medical secretary.” His doctors treated me like a health care partner. He fondly called me “The Enforcer.”
I understood the progression of his comorbidities, his doctors told me how to understand his shifting medical situation as each year passed. He fell in Assisted Living, he had ignored/not reported urinary issues. Hospitalized, he had a UTI, was septic, and had aspiration pneumonia. He had been non-compliant about drinking the thickened liquids, so I knew it was just a matter of time before he got aspiration pneumonia. He was 88 years old. He was having too much fun with his new friends in Assisted Living to be bothered by details (:-)
The hospital doc spelled it all out for me, told me I might want to think about hospice care. The doctor told me I needed to decide how many times we were going to go in and out of the hospital. My dad and I had talked previously (over the years there had been several close calls because of CHF). He did not want to be intubated, he did not want to be resuscitated if his heart stopped. His nursing home had a special hospice floor, but for some reason they were required to contract with outside hospice agencies. So, him being able to live on that floor (more consistency with staff, a private space, good staff/patient ratio) was mandated by enrollment in hospice. I was already on board with that idea, so the extra perk of a special floor made me feel very good. I thought I had created the perfect cocoon for him. I knew we were finally at the end of his long fight to keep living, but he needed time to accept that. Having professionals who specialized in the care of people who probably had less than six months to live was what I wanted for him. I was ready to fall into that nice cocoon of compassion, myself.
The specter of him drowning in his own fluids haunted me. But I had learned from medical professionals about the value of morphine to address “air hunger.” Also, Dad’s heart function was very low, an ejection fraction of 8. The aspiration pneumonia kept coming back, after discharge from the hospital. I elected to let him get oral antibiotics (per the MOLST) to try to combat lung congestion. He continued on a sodium restricted diet, as he had done for the previous 15 years. My hope was that his heart would simply stop before he had to go through gasping for air. I knew that each time his body battled infection, it took another toll on his heart. It was a possibility that he could simply expire from heart failure, so I took that. I networked with the DON of the nursing home before choosing the hospice floor. She set me up with a Palliative Care physician to fully understand the MOLST. His heart failure specialist examined him when he was still on the Rehab floor of the nursing home after his hospitalization. He recommended hospice care, and explained to me all the different dying scenarios that were possible. In the end, I got for my father the most comfortable death I could imagine. He was able to be lucid all the way to his peaceful end. It was a calculated gamble on my part, and I had the full support of the nursing home medical staff. But not from his hospice provider nurse.
You sound like a very good daughter. People live longer now because of modern medical advances. Our generation is thrust into what I call a war zone. Once you and your loved one have to enter into different medical care systems (from home to hospital to rehab to assisted living to nursing home) you find out all are not consistent, all are not run equally well. I sure feel like I have PTSD just from that. Add the grieving process, and lack of self-care for ourselves because we are just so overwhelmed trying to sort it all out and put one foot in front of the other every darn day, to the end. No pressure, eh?
I hope this helps, Barb. Hugs to you.
Debbie1955
I remember when my Mom was in the hospital dying, seeing signs posted here and there stating how aggressive behavior towards any hospital staff will not be tolerated. It's obvious to me then that disagreements between patients and hospital staff are commonplace. However then can we hope to win?
I think that was the most frustrating thing for me, to be at the mercy of the Medical professionals. And yet, if I had to do it all over again for my Mom, I can't think of anything I could have done differently. I did what I thought was best at the time and unfortunately, it's not like I had a chance for a do-over.
Gershun, your experience with the hospital docs is just too awful to contemplate. I would have simply burst into tears at the "skinny" comment.
Yes, PTSD and lack of self care. Someone posted a question the other day about
" what would you do if your LO was no longer here?".
It's not just that they are no longer here. It's the awfulness at the end, it's the bad habits you've developed and the dread of facing one's own decline soon that is paralyzing and disheartening.
Mutual support here is wonderful. Maybe, just maybe we can get through this.
Guilt, important to have compassion for oneself. There was no clear direction lots of the time, but your love and dedication made you work so very hard to do the right thing.
Any time my father had a doctor who seemed “not invested” in him, or who blew me off, patronized me, I found someone better. Inside, I was mustering all my communication skills, remaining professional, but I paid a price with stress. It is so NOT fun to stand up to a medical doctor with an attitude. There are lots of better ones out there, if you have the option of changing. Many don’t, for various reasons. I was lucky that way. There’s nothing worse than feeling trapped in a bad situation.
All the coping skills and chutzpah I developed the in last 15 years sticking up for my father, I have learned to use for myself. Working now on getting out of the same dangerous health situations that cost my dad so many problems. Pre-diabetic, overweight, heart palpitations. Power eating jars of peanut butter with a spoon was SUCH an unfortunate decision. :-) We probably need a new thread: Recovery Support Strategies.
It was amazing to have time recently to pick out a new shampoo for myself, I was so used to operating like a robot: “Its just hair, wash it, get to the nursing home.”
Hugs to you all,
Debbie1955
Mutual support thread ! Yessssssssss
I want to say that these posts are so rational, and Debbie's insight and approach so calm and methodical, that I want to come back, reread them, and gain from them. These aren't the '"hospice killed my mother/father" type posts. These are insightful, analytical and reflect the dilemma of end of life decisions.
They are also written with knowledge and compassion, not based on lack of knowledge and rhetoric.
If the other anti-hospice posts were as articulate and rational, I might have more sympathy for the posters. But rhetoric doesn't appeal to me.
So, thank you all, not only for stating so eloquently your own experiences, but also lending support to the decisions I made when I knew my father was dying, decisions I made to try to avoid the lingering end of life scenario in which he was unable to do anything except wait. Even then, there were agonizing days when I just wanted him to have relief.
You said: [ "She made my life hell. I had signed the MOLST and was quite well informed. She balked at treating him for things that the MOLST agreement spelled out.
Her mode was to quickly sedate him with Trazadone after asking him at the first meeting if he was sleeping well enough.
He was withdrawn almost immediately, and the hospice nurse would not address my concerns.
After two weeks, he told me he thought they were giving him something that made him not care. I had to fight to get him Ativan, a drug he tolerated much better. He only needed .25 mg at bedtime." ]
Debbie1995:
I am so sorry you had to go through that.
These are the types of very rational concerns some people are attempting to address, here, despite some who hysterically label them as trolls or have a need to mock or belittle their thoughts on the subject.
The issues you mention are ALL legitimate concerns and need to be discussed.....honestly and openly and.... with the real version, not the sugar coated version that protects delicate egos.
I am not sure why some are in such tremendous denial about the fact that some hospice nurses, and sometimes doctors or nurse, use drugs as chemical constraints or to make their jobs easier by keeping the patient sleeping.
And, yes, sadly, without a doubt, these drugs very often hasten death.
Perhaps those people in denial feel some helplessness or doubt about their own choices regarding the person in their care.
As for what dosage of morphine or an anti-anxiety drug is a lethal dose, well that depends on the patient. That is the only rational fact that is important to consider in any medical setting regarding any drug.
For example: what other drugs is the patient taking? What is the state of the kidneys or liver?
A small dose of a pain killer or anti-anxiety drug may be relatively harmless to one patient, while being a LETHAL dose to another patient.
The real point is that NON OF THE MEDICAL PERSONNEL took into consideration what Debbie's DAD WANTED.....except for Debbie whose life was turned into hell.
Even as Debbie's dad complained that they were giving him something that made him "NOT CARE," the hospice nurse did not pay attention to his plea.
Perhaps in some cases, if the patient wants to be less cognizant, as death nears, then in that case inducing a feeling of not caring by administering a certain drug, may be a good thing, for those particular patients.
However, if the patient resists this, and wants to be cognizant and coherent to the end and is perfectly willing to bear additional pain to achieve that......, then that is the patient's choice.
Even though the patient's choice may be INCONVENIENT for the medical personnel, the patient's wishes should always take precedence.
Every person's pain tolerance is different, and some people prefer to be alert and talking and thinking for as long as possible, even if that includes, at the moment of death.
Also if the patient wants to refuse such drug in exchange for living longer, that is their choice, too.
Some may see it as clinging to life, but they are not the one dying.
It appears that it depends on how you write something whether or not others feel it is a valid concern and that you have the right to grieve or state your opinion.
I feel badly for anyone who loses someone close to them and it doesn't matter how articulate they are or what their writing style is - I have compassion for others.
Again, thank you Heather for your comments. You truly have compassion and care about others.
Debbie1955, I am so sorry for your loss and it appears you loved your Dad a lot and I'm sure he was pleased you were his advocate.
On the other hand, my mother was on hospice in a nursing home. Her medical chart indicated she had bad reactions to morphine, and it was not used for her. Somehow they got the pain managed without it. And three months later she "graduated" from hospice and lived another two years, reasonably content.
Because I had good experiences doesn't make me think there can't be any bad experiences. I do believe the bad experiences reported. Sometimes I can also see that the reporter had some pretty unrealistic expectations, but other times the experience was truly terrible, no matter what standards you use.
What I don't get is what posters are trying to accomplish when they use words like "murder" and "evil" etc. to this particular audience. Many of us, maybe most of us, have made or will face making a decision to use hospice. Giving information is one thing. Using loaded language geared to produce a guilt reaction seems unfair.
I will say, though, that when someone who has shared the caregiving journey and the struggles and the successes with us for months, and who has agonized over decisions with us, wants to vent and get very emotional about the bad hospice experience they perceive they have had, I think we are all a lot more tolerant. It is the idea of a stranger coming in here and ranting that gets us thinking about trolls.
I don’t want to keep going on with my sad story here, but thought a few more pieces of info could be helpful, especially about how drugs got picked and prescribed in Dad’s hospice care.
Any competent medical presciber would take into account how drugs he was already on would interact with each other. Any competent health care provider would also listen and discuss a family’s concern about a newly introduced drug.
Part of the problem had been me not knowing how their system worked. Who is in charge? The NH or Hospice? We work together was the answer I got that first day. So I thought they had it all figured out. Not!
The hospice nurse had asked for the order, but she could not approve it as a prescriber. I thought the medical director in her hospice organization must have approved it. Chain of command, right? I was definitely not sure if they were doing the right thing. As soon as the hospice provider nurse dismissed my concerns, I tried to get info off the internet, that wasn’t much help. So I kept pushing back about the Trazadone with the hospice nurse. She kept saying he was on the lowest dose possible, that he told her he didn’t sleep well, and this was to help him. He had been on 10 mg. of Celexa for years, so that was in his system. He had taken Ativan briefly a year before, so I knew that did not affect him badly. She would not order Ativan from the beginning because she said the rules about it had just changed, and her organization was trying to understand the new rules.
When he finally said that to me, about not caring, (two weeks later) then I knew it was the drug. The hospice nurse never got the opportunity to blow his concerns off.
I told him they WERE giving him something that made him not care, he had every right to refuse that drug. I made sure I was with him when the hospice nurse came in the next morning. He told her that he would not take that drug any longer.
It only took a day or two for him to bounce back to his normal self.
The nurse unit manager of the hospice floor in the NH was able to get an order for Ativan from the NH medical doctor, at a very low dose. She understood the new rules, it was not complicated at all. In fact, she was the one who responded with concern when I said I didn’t put Dad into hospice so he could become a zombie. That was the end of me giving the “benefit of the doubt” to the hospice provider nurse. As I mentioned in an earlier post, I think she had been allowed to operate in a vacuum for too long. She had the trust of her organization, and I think it was misplaced trust on her employer’s part.
After Dad died, I wanted to know who had “rubber stamped” the Trazadone drug for him. It was someone on the medical staff of the nursing home. I don’t know who, but found out that the NH policy is to have careful monitoring of that drug when given to the elderly. So somebody dropped the ball, or assumed the hospice provider nurse knew what she was doing in asking for the prescription.
Among the many challenges caregivers and family have to sort through is how different medical systems work and interface. When Dad lived at home, it was easy. He had specialists and a PCP. I coordinated his care, everyone was on the same page. He was a Success Story for his doctors.
Institutional care (hospitals, skilled rehab care, assisted living, nursing home care) introduced a level of chaos I did not expect. I used to say we have the best medical care in the world in the US. Now I say we have the best medical knowledge at our disposal, but our institutional systems often get in the way of using that knowledge.
Debbie1955
Your dad was truly lucky to have someone like you to watch out for him.
Although caregiving a parent, is tremendously stressful, you still fought to the end. Obviously you did not see coordinating his care or his desire to be alert, as an inconvenience, and you adamantly wanted to abide by his wishes.
Sadly, you are so right in all you say about the chaotic medical care issues.
Also, I have heard complaints about "at home hospice care", too.
This usually happens because sometimes adult children can not be home all day to watch what the CNA or nurse is doing or not doing. Sometimes, too, they are simply too exhausted to take notice. Also, sometimes they are not capable of understanding medical lingo or drugs, and/or they do not know how to navigate the medical system to get to the person who can make a competent decision.
The at home care system for medicare or private hire is also part of the incompetent chaotic institutional web of care available in the US.
Your dad was so lucky to have you watching over him.
Yes, you are right, whoever "rubber stamped" the Trazadone drug, under the circumstance, definitely dropped the ball. So sad. Still, it was so good that you were there to catch that ball. Good job.
You said: [ "I feel badly for anyone who loses someone close to them and it doesn't matter how articulate they are or what their writing style is - I have compassion for others." ]
Iknowthetruth:
I agree.
Thank you for posting your thoughts, you are not alone, and you have likely helped others who may be too timid to speak up.
It also does not help that some are referring to posters as "strangers who come here to rant".
This is an open forum, not a closed club. All first time posters could be considered strangers, that does not mean they should not have a voice.
i wanted to share the below paragraph that I ran across today that I believe is so true and appropriate. If one person can be saved because of my Mom's story, I am glad. Her story has been published.
You're not a victim for sharing your story,
you are a survivor setting the world on fire with your truth.
And you never know who needs your light, your warmth and raging courage.
Alex Elle
I am so sorry that you miss your sweet mom and best friend.
I am also sorry that you were burned by the "chaotic medical care system" described so well by Debbie1955.
You did your best, despite the limitations of our chaotic medical care system here in the USA, and for that you should be proud.
Your light warmed me, and I know it will warm others who felt so helpless and alone, and perhaps voiceless, in regard to the care of a dying parent.
Not all people experience such difficulties, but when someone does, and no one will listen or take them seriously, it can make someone feel very alone.
Sadly after our hastened departure dropping us in a hot small apartment with no medical equipment and NONE of the proper pain control medications we then had the misfortune of being handed over to Fransican Hospice. The next 7 and 1/2 days was beyond anything I was prepared for. The lack of true compassion was shocking. Let me rephrase that... They had a lot of compassion for my husband being "dead" but none for helping him stay alive. I am interested in seeing if my post is seen, as I have learned that many have that "big brother" mentality and someone tends to be behind to clean up the messes left by those..... less caring shall I say.
Heart braking in today's world to again see that no one surpasses the bottom line $$$
I am truly sorry for your negative hospice experience(s). It's not SUPPOSED to be that way.
I was a hospice nurse up until March of this year. (I didn't want to work 2 jobs.) Maybe it was that I worked for a great company, maybe my patients liked my style of nursing, maybe the families had previous experience with loved ones dying 'without' hospice and were grateful to have us. I don't know. But I never had ONE complaint from any of the patients or family members that I took care of.
MY job was 8 hour shifts in the patients home for emergency symptom relief (vomiting, pain, etc.) or respite care for the family when they were at a breaking point. Maybe that had something to do with how they perceived hospice. Often times I was the nurse at the patients last moments. To most family members, having a sleeping loved one passing on to the next realm is better than having an agitated, gasping, pain-riddled loved one departing in agony. Hence, the use of drugs to accomplish "being comfortable". They are to be used when needed. It's difficult to accomplish pain relief without having the patient fall asleep. When YOU take a narcotic pain pill I'll bet you get sleepy. That's the side effect of relieving pain.
I have since learned that all hospice companies are NOT the same. If you aren't happy with your company, talk it over with the director of nurses. If still not satisfied, CHANGE companies. Just because this is a free service covered by Medicare, doesn't mean you have to stay with the company that's been chosen. You can move from company to company.
What I found was most family members aren't "absorbing" ALL the information that is given them on the first visit. Often, they don't consult the booklet or binder with information that's left in the home either as to what the policies and procedures are. They don't call the office to ask questions. So they really have no clue as to how the system works. I understand they are grieving or in shock but someone should take the lead to understand what the game plan is. I know it's a lot to take in but do your homework. You would read the contract if you signed up with a gym, right?
I also got a lot of family and friends, who hadn't seen the dying person in a long time, come in madder than h*ll that the situation was like it was.
Please have a designated family member communicate with ALL people involved with the loved one so no one is flabbergasted at the situation. I've seen fights at the dying patients bedside and family members not knowing that the loved one was near death.
You also have the right to refuse meds (if your loved one can't say or they signal they don't want them.) There are usually "standard orders" for medication administration BUT that can change if it's not in the best judgment for the patient. Talk to the nurse, who will talk to the doctor, and the orders will be changed. I've done this.
Hospice nurses are there to make the transition from this life to the next as smooth as possible. Unfortunately things don't always go without a snag. Pick a family member who will be physically near the loved one most of the time, to be their advocate. If you don't like what's happening, SAY something. Don't wait until it's too late then say this "happened" to us. With your input, your loved ones departing will happen the way the dying person (and their family) want it to be.