There's a great doctor who's written a book to help us decide on what end of life measures are helpful and which do more harm called "Being Mortal" by Atul Gawande. Frontline did an interview with him in 2015 so if you search the title and PBS Frontline you should be able to watch a short introduction. It's very hard to watch someone slip away in peace, but it's harder to watch them fight against it and drown/strangle/etc. Hospice allows them to pass peacefully if the medicines are given to reduce the anxiety and feelings of drowning or strangling. It's hard not to "do something" but comfort measures are often the most merciful we can give when it's time. Bless you.
It’s normal to second guess yourself after having made the decision to bring in hospice care for your loved one.
Why? Because this is it - it’s life and death.
Think about what brought you to this decision. Were their several trips via 911 to the hospital with your mother often suffering more because of them? Has your mother just said “enough is enough”? Mother having many “bad” days vs good?
Hospice won’t let your loved one suffer when dying. They are experienced in providing the correct level of care to someone with a terminal condition.
Talk with them about your concerns.
And if you feel the decision to plave your mother on hospice is not the right one for her, then speak to your mother if she gave input and take her off hospice. Realize when this happens the patient will be the one suffering the poking and prodding not anyone else.
Speak with your hospice providers and let them know how you feel.
I agree that you need more information about what it means to receive hospice services, but you always have the legal right to discontinue their services. One of the things that might help is a 2 page form your state may have (in my state it's a legally enforceable document) which is like a DNR only it's very specific, and asks you to decided what kinds of measures you want taken at this time. Some of the questions can be confusing, but someone should help answer them. Thing is, when hospice is involved, and your loved one is at home, they are responsible for medical care. They are not there to deny care to your mother, but the goal is not to make her better, the goal is to keep her comfortable as her life nears the end. It's very difficult to get used to the idea that there may not be anymore trips to the hospital, but they may not be needed anymore.
You should also have a conversation with them about what you should do in various situations, like what to do if you think your mom is having a heart attack or a stroke. Our gut reactions are to call 911, but the paramedics are are required to attempt to resuscitate, and maybe your mom (and you, as her proxy) have made the DNR decision. So then, who do you call, what do you do???
These are very important questions you need answers to. It may be that the person or people you have dealt with so far haven't done all that they're supposed to do, or aren't the best match for you. I fired the first hospice service; we never did meet their social worker, and the nurse could not have been more disrespectful, unresponsive and unavailable. The next agency has been mostly great. When I requested a new social worker they were great, said no problem, and our new one is completely different.
I'd suggest reaching out to someone at the hospice to discuss these concerns, maybe the social worker or a volunteer. It's a really tough decision to make and not unusual to have doubts.
The main point of Hospice is no extreme measures. That the person passing is to be kept comfortable and allowed to pass. There is a doctoer associated with Hospice, there has to be. He is the one who writes up the orders the nurses need to perform their duties and give meds. By the time Hospice is called in, everything possible is has been done. A Hospital visit will not change the outcome. If you choose to take Mom to a doctor or the hospital the contract with Hospice is null and void.
Is she in a facility in Hospice or at home? In any case, if you feel she needs medical care or needs to go to the hospital or needs to see the doctor, you need to contact your Hospice Nurse and tell them what you need—what’s going on. They handle all this now, not you. If you are confused over what Hospice is or provides, ask the nurse to explain it to you or read over the materials you were given when she was put on Hospice.
So went googling. There are a number of talks by Gwande about his book on YouTube.
https://m.youtube.com/watch?v=mviU9OeufA0
And a TED talk.
https://m.youtube.com/watch?v=L3QkaS249Bc
Why? Because this is it - it’s life and death.
Think about what brought you to this decision. Were their several trips via 911 to the hospital with your mother often suffering more because of them? Has your mother just said “enough is enough”?
Mother having many “bad” days vs good?
Hospice won’t let your loved one suffer when dying. They are experienced in providing the correct level of care to someone with a terminal condition.
Talk with them about your concerns.
And if you feel the decision to plave your mother on hospice is not the right one for her, then speak to your mother if she gave input and take her off hospice. Realize when this happens the patient will be the one suffering the poking and prodding not anyone else.
Speak with your hospice providers and let them know how you feel.
Thing is, when hospice is involved, and your loved one is at home, they are responsible for medical care. They are not there to deny care to your mother, but the goal is not to make her better, the goal is to keep her comfortable as her life nears the end. It's very difficult to get used to the idea that there may not be anymore trips to the hospital, but they may not be needed anymore.
You should also have a conversation with them about what you should do in various situations, like what to do if you think your mom is having a heart attack or a stroke. Our gut reactions are to call 911, but the paramedics are are required to attempt to resuscitate, and maybe your mom (and you, as her proxy) have made the DNR decision. So then, who do you call, what do you do???
These are very important questions you need answers to. It may be that the person or people you have dealt with so far haven't done all that they're supposed to do, or aren't the best match for you. I fired the first hospice service; we never did meet their social worker, and the nurse could not have been more disrespectful, unresponsive and unavailable. The next agency has been mostly great. When I requested a new social worker they were great, said no problem, and our new one is completely different.
I hope you get the answers you need soon.
How old is Mom and what is her health problem?