Hospice nurse kept saying they don't do curative treatment. Any advice?

My two cents. My mother is in hospice as well. Yes i too felt and still feel they are in the business to keep them comfortable until they die, which I do not like at all, but understand their role. It sort of sounds like in your case maybe some of their approach was not well or compassionate. I too feel that way at times with my mothers nurse, but my parents really like her and I do think she cares. Like everyone else has said she does not have to stay on hospice but when and if ready again she can reapply. If your mother is in a position that she is not dying then it just doesnt make sense to keep her with hospice, as she needs proper ongoing medical care. I dont know if this has helped you at all. Just know you absolutely are not alone and it is difficult for all of us caregivers to do what is best for the ones we love so terribley. Stay strong!

FLOW, How about "allow her to die, if it's her time"?. I believe that's what hospice is about. We're talking about a person with severe copd who can't have inhaled anesthesia. This is a complex, end of life problem.

I am helping people by telling them so they can be prepared for the worst but hope for the best as the saying goes. Are you trying to scare away the people like me who have suffered and want to share their experiences. When they share they are also helping others by giving them knowledge of what can happen. It is true not all hospitals and nursing homes are bad but when they do bad things people should be aware and not just sweep it under the carpet as some of you seem to do. This is a site to help caregivers which I want to do by warning them before their loved one is hurt or killed.

AC Administration, can you do something to get Flowgo some help??

Flowgo. This question was asked by igirltech. Allow her to get her question answered, please. Don't start instigating by saying." What are you talking about?"
She is going to start wondering about the wonderful caregivers on this site as they try to get you to go elsewhere for your own help, for your own good. New posters have no idea about the many many questions you've posted with your own agenda, not really desiring a solution or any answers that differ from your agenda. I am reporting all your posts from now on, and this post explaining hopefully why you should stop, and go for help. Apologizing in advance to everyone who may disagree with my advice to Flowgo. I will take that risk.

Flogo, it may be YOUR truth, but in fact, many of us here, myself included, have had good experiences with hospitsls, rehab facilities and hospice organizations. The fact that there are these "other opinions" seems to be lost on you, as you keep insisting that all of these organizations are bad. They are not. My relative entered hospice, improved, was discharged, went on hospice again, fell and went off hospice to have a hip replacement. All without family members hovering. Others here could tell you similar stories.

You had a bad experience several years ago. I am sorry for your loss. But your constant rants are disrupting, off-putting and damaging to those seeking INFORMATION. Please stop over generalizing. You risk being seen as quite imbalanced.

This needs to stop happening. That means that people have to be aware that this does happen and then can have a chance of being safe.One example of this would be never leaving their loved one for even a second if they are in a hospital or nursing home to recover and beware of hospice. It is there to help a person die even if the person is not ready to die. So people need to be aware of this. It is also not safe to leave your loved ones alone with hospice staff. Hire your own nurse if a break is needed. I used to think that you can totally depend on medical staff to help your loved ones out. That is far from the truth. I was able to trust some of the staff but some staff you can trust as much as you can trust the wolf in little red riding hood.people need to be aware. When a person is in a hospital or recovering in a facility they are helpless. that is why the family needs to be the one who protects them from harm and to do this they need to be aware of the dangers ahead of time.

My situation as I found out on here and other sites and others is not so rare. That makes it even worse.Family need to at least know what can happen and then they may be able to help their loved one.

I agree killing people is not only unprofessional, it is morally wrong and actually illegal if they are caught. Unfortunately they get away with it cause the family is usually so distraught to know where to turn and go to for help to stop it from happening again. I will still try to figure out ways to help others even if it is just stating what happened to my mom. Not everyone has heard what happened.

Falls happen, and hindsight is always 20/20.
Given her COPD and chronic pain issues the morphine was probably a reasonable med to try. Not everyone on it will suffer from delirium, and given her history with another opioid medication I would think it was less likely to expect her to have any severe side effects.
I understand your outrage when those you have entrusted to care for your loved one have let you down. Navigating the health care system can be like walking a maze with a blindfold on, never sure if we are making the right choices. I have often wished for someone to hold my hand and guide my way.
I think you can take comfort from the others here who have had similar stories and a positive outcome. It sounds as though your mom is being taken care of now and is being kept comfortable?

Flowgo, your post reflects what you think about your own situation; it would be very rare and unprofessional for medical staff to "probably want your loved one to die". Others have good experiences from highly trained hospice staff. Your situation is different and the community here understands that, and has expressed that you go for help because for you to keep rehearsing it here does harm to yourself. It is not good for you and helps no one to continue writing your experience with the thought of changing the medical care system. Please align yourself with others who are already successful at advocating against the medical care system, if you must. Dear girl, take care of your heart and mind.

They probably did want her to die. It is so terrible but that seems what most of them are in business for. That seems to be their dirty little secret.It is too bad she cant get a hip replacement. That is the best way to go when a person breaks their hip.I know some people have to fight with their insurance to get a hip replacement.

Thank you all for the answers. I want to at least clarify that Hospice did describe their role correctly. I disagreed with her placement in Hospice and felt Palliative was what she needed. Her diagnosis for Hospice care is COPD. However she also has MS with Chronic Pain. I feel that her general doctor was uncomfortable with her pain medicine. Now that we are in her new situation, I am just frustrated what is going to happen now. You go from the pain meds that Hospice has you on back to what? I'm not sure and found out today that their is no way to repair her hip without anesthesia but we are going to make appt with specialist and see if maybe the think she could handle a surgery. Hospice did "alright" however it was a pain med change from Oxy to Morphine that caused "delirium" of which I feel Hospice should have been on top of it and told us to not let her up and around since that is how she fell coming out of the bathroom. Hind sight is 20/20 but I really do feel they should have said something since we were reporting to her nurse that she was kinda out of it.

Jeanne, I've stated before that I am envious of the American hospice model. I know when my brother had cancer he went to the hospice wing of a major rehab hospital, but it was only one wing and I'm sure way too few beds for the need. There are stand alone hospice facilities, but I think most people spend their last days in a hospital or nursing home. Our little local hospital has only one designated hospice bed.
I'm fearful I won't have sufficient support available to me if my mom needs more intensive care. For now I have a doctor who is willing to make house calls a few times a year, a nurse who checks in on us once a month and a psw who comes in twice a week to help with bathing and give me respite. The problem is that they are all separate entities and the care is not coordinated, although our nurse did contact the doctor and advocate meds for mom's anxiety. I know that many people do choose to die at home, but I'm really not sure how that will actually work. As health care is a provincial responsibility there are no national standards so I have no idea how the other provinces are doing things, and I did try to research this when I was making my decision on how to care for my mom.

cwillie, these organizations do try to explain how they work -- at least the two I've had experience with did. So why would anyone freak out when it works as described? I have some ideas.

The person freaking out may not be the person who checked the loved one into hospice. For my mother, I was the only one of 4 daughter and 3 sons who was willing to actually sit through the intake process. We all agreed this had to happen, but I'm the only one who heard the explanations. I tried to pass on all the key points. The situation for freaking out never came up, but I can see how other family members could have felt blind-sided.

Putting a loved one on hospice is usually a very traumatic, emotional event. Because I'd been on AgingCare and other forums I already had a fair idea of how it works. But I can understand how all the careful explanations could go in one ear and out the other.

Having a loved one on hospice with an acute need is also traumatic. During that emotional time it may not be easy to remember the description you were given of how hospice works.

Maybe there are some hospice organizations with sloppy procedures. This is a big country! Uniformity isn't always perfect. But in my experience hospice organizations do try to explain how the system works and don't expect families to figure it out for themselves. (Which is no criticism of people who do freak out. This is a very emotional time!)

My husband's hospice nurse was awesome about dealing with acute care needs immediately. Once she examined him and went out to her car to get a catheter kit. (Don't leave home without it?) I was so grateful he got relief and we didn't have to take him anywhere. I was cautioned more than once not to call 911 without first calling them to cancel hospice, so there would be minimum complications on the administrative/financial end.

Cwillie, what care is available in Canada for end-of-life?

I'm a total outsider looking in (since I live in Canada) but I have read many times of people freaking out when their loved one under hospice care has a need for acute care. You'd think somebody in these organizations would be aware of the need to explain how the system works instead of just letting families try to figure it out themselves.

Medicare won't pay for hospice AND anything therapeutic at the same time.
Not even physical therapy.

Going off hospice is not a bad thing. Their care approach is totally different than a treatment team's approach.

Hospice does not do curative work. It is in their charter and in their mission statement and it is what Medicare will pay for. Sometimes what passes for "curative" is a little hard to understand. But now that Mom is off hospice you can get treatment the medical staff thinks is feasible and justified. Once she is stable, reapply for hospice.

My mother broke her hip. Surgery was not recommended. She went on hospice, since she did seem to be dying. But she recovered gradually and after 3 months she was clearly not dying and hospice "graduated" her off the program. We took her then to the orthosurgeon. There was nothing to be done for the hip. She is wheel-chair bound but content, a year later. Hospice helped manage the pain in her hip. If we had wanted "curative" care we would have had to get her off hospice first.

Sad, I know, especially in such an emotional time of your life. I've experienced hospice for Mom and for my husband. Both organizations were amazingly compassionate and helpful. But they have to follow their rules.

Get her to the emergency room via ambulance. That's why Hospice dropped her so you can get her treated.