Expectations from Hospice

Yes, they may give fluids and/or nutrition and obviously pain control.

However, the patient themselves may specify otherwise. Most will get fluids. I know some that have declined nutrition. And at this stage, your aunt is most likely not able to digest anything orally and she may even have lost all interest in food completely. Nutritional supplementation through an IV is possible, and may or may not be an appropriate choice depending on the situation.

I am sorry to read this and hope they are able to control her pain. As a result, as the need for more pain medication increases and her disease progresses, she may spend more and more time asleep.

As far as time left which is an oft asked question, the hospice nurses generally have the best concept of this. It can vary greatly. Going on hospice does not mean there are a few days, a week or even a month left. It can be more, it can be less.

Depends. With my dad, when he lost the ability to swallow, they stopped giving him food and water. No iv as the philosophy was not to cause pain. Morphine was sublingual. Hospices are all different and doctors order different things for different people. The hospice folks told us that they do not die because they stop eating. They stop eating because they are dying. That was an important thing to hear and made it easier to bear witness to his death process.

They will allow fluids and nutrition as long as it oral not through IVs and feeding tubes. They will keep her as pain free as possible. They will keep her family aware of where she is in the process of dying as well as possible. They are there as much for the family as the patient. I hope her passing is as peaceful as possible. Sorry your family is in this sitituation.

My great aunt received fluids and morphine via an IV. It was her choice to have an IV. This was once she was brought home. I can think of one other person I know who had an IV for probably the first week or so of her hospice care. In experience, it has been very individual.

we had the same questions when my mom was in hospice. as far as food and water, i remember our hospice nurse telling us that at some point, the body will not accept food or liquids anymore. the end stage of life has a process it goes through and part of the body shutting down is to not require sustenance anymore. as a matter of fact, it would be harmful to force food or liquids when the body's organs are starting to shut down. is the person pain? no they are not. they will not starve to death. apparently, the body release some chemicals (much like morphine) that helps suppress the discomfort normally associated with hunger or thirst while the body is shutting down.

I have experienced 3 people very close to me on hospice all 3 a different experience. only because of the different situations. 

1. My husbands grandmother. State Utah. She broke her hip. went to hospital did fine. went home a few weeks later she fell again this time she just kept getting worse until she was no longer well. She had other health issues along with the hip issue.  We got to Utah about 8 days before she passed. At first hospice was there to make her comfortable but she thought she was getting better. no body would tell her she was not getting better. she had always smoked cigarettes and drank diet coke. they had stopped feeding her a couple days before we got there. she was only given water on those little pink sponges on a stick. she was very irritated one day because she wanted a cigarette and diet coke. every body sat there and kept telling her no. I walked up to her bed lit a cigarette and put the pink sponge on stick into a diet coke and put it in her mouth. Then I gave her a drag of her cigarette she was all smiles after that and never asked for another cig or diet coke. She lasted 3 or 4 days later. One of her grand sons hadn't come to visit her and no body in the family could find him so when we got there my husband went and found him... he was at his house not answering the door because he didn't want to hear grandma was gone. husband basically told him either open the door or he was going to break it down.  Danny came to see his grandma and 5 hours after he left she peacefully passed away. 

2. my Grandma, had been sick for a few years. she was put on hospice but still eating food and drinking her damn coffee (she wouldn't drink anything else) I got there to help my aunt with grandma at day 10. That night she wouldn't eat. my aunt would fix her food and it would just sit there. I told my aunt that the first thing she doesn't want is food.  she was still drinking her coffee. she even wanted to go to her own bed in her own bedroom at night (she had a hospital bed in the living room) so my aunt was taking her to her room every night. that made it worse on every body. so that night I stood my grandma up sat her back down on the bed and laid her back down. all the time talking her through getting out of bed into wheel chair going down hall and into her own bed. while not leaving the hospital bed in the livingroom.  Each day after that she got weaker and weaker. She didn't eat or drink after that. the 3rd day I was there the hospice lady came to talk to the family. my aunt wanted me to talk to the hospice lady because my aunt wasn't sure she was telling me everything. So the hospice lady explained that when people are this ill they don't eat and that they can last a long time with out nourishment because they don't lose that much liquid as the vital orgins are shutting down and there is a time line for all of them to shut down. that is why they give dying people morphine to release the pain from everything involved. the one thing that my aunt was not doing is she wasn't giving my grandma the morphine every 4 hours and my grandma would be fine for a while and then the morphine would wear off and then the pain would kick in then it would take longer for the morphine to work. After that conversation I had with the hospice lady I made sure my grandma had her morphine every 4 hours. she passed away on the 10th day I was there. 

3. my mom. she was in the hospital for 3 weeks. diagnosed with ALS and had a feeding tube placed in her stomach. She was then transported to a rehab. She was only given 3 months to live.  I was called one night late I think it was 10:30 or later. I got to the rehab as quick as I could (lived 15 minutes away) she had a really bad night.... the nurses and I was trying to calm her but she wouldn't calm down. she kept hearing loud noises but there wasn't any noise in the middle of the night.  The next morning I called my aunt (mom's sister same aunt that took care of my grandma) and told her she better get down here.. She lives 250 miles north of us. They got her that night late I think it was about 9 :30  or 10 pm. I know it was after visiting hours but the nurses let them in to see my mom. she was still very distressed. that day I went home and got her dog and brought him to her. it helped a little. so the next day my aunt and uncle and I sat with my mom. she was in and out of sleep. she still had her feedings through her tube., The day my aunt got there was the day the nurse called hospice. they made an appointment for the next day.  any way my aunt and uncle left on the 3rd day which was the day hospice was to be there.  my mom was a sleep when they got there after all she had been sleeping for 3 days. we had sat there in the room with her laying there sleeping with her dog on her legs like he always slept. then the day after my aunt left to go home. I was walking out my door to go sit with my mom and the nurse called and told me she had passed. hospice didnt' do anything but come look at her take her ring of her finger and make me sign the paper work. she was on hospice 24 hours. 











 

My grandmother is in a nursing home right now, in hospice care. She is allowed an IV with fluids or nutrition, but has chosen to to have this. She does have an IV pump for pain meds. I'm not sure if the IV is allowed because of the nursing home or the hospice care, though.

First of all I am sorry you are going through this. I wanted to answer earlier but to be honest I had to step away for a few minutes. This message hit to close to home for me. It has only been three weeks since I was were you are now with my mom. This is how it happened for me.

My mom lives in Texas I am in VA. I knew she had cancer and that she didn't have long. I went to see her I didn't expect for everything to happen while I was there. She was in the hospital and only had a few minutes at a time where she was awake enough to speak to us. The day it was decided to put her in a Hospice facility she was alert enough to give her social security number and other info info to the nurse. They moved her by ambulance to the facility we got her settled in. I asked about her IV fluids since that was the only way she was getting nutrition and they explained to me that they didn't give that. They said it is actually harder on the patient to keep the nutrition going. That was hard for me but the whole thing was difficult. After she was all settled I woke her up and told her I was going to her house and would see her in the morning. That was the last time she was awake at all. I came back in the morning and sat with her all day they told me that evening that it might be best if I stayed with her. She passed away the next morning very early. The hospice nurses were fantastic. I don't know how they do what they do everyday. They are Angels in my book.

I was also told that they do a lot of the pain meds under the tongue, in moms case she had a mediport so they didn't have to do that.

I wish you guys the best of luck and you will be in my prayers.

This was the situation with my grandmother.  My own mom was upset for the same reason, but we tried to explain the same things to her.

My grandmother was sleeping most of the time at the end, and she was in pain if she was awake, so they kept up the pain killers and tried not to bother her if she was asleep.  

Been through this a few times for various family members, including my Dad.  It really varies depending on what the person wants, and what they are able to do are are comfortable with having.  *Different locations may have different procedures as well.

One family member (a nurse) was insistent NO IV's, NO (Gastric) TUBES, NO CATHETERS.  Several others (like my dad and my grandparents (his parents) had IVs and catheters, and a few (like my aunt) had neither, but still took some liquids and semi-soft foods up to the day prior.  

Pain management is a focus, as is support for dying.  One cousin, a local religious nursing order did hospice and respite care for her.  My father and grandparents were in a hospital (Catholic Hospital with a Religious Order running it), Dad was being moved to the hospice floor later in the day on the day he died (at 5 am), and my grandparents were on hospice floors when they died (a couple years apart).

Two different neighbors had hospice at home, one had an agency that managed their care and had someone come each day to help out. Another, it was a prolong process, they had a different group and he went through three "recoveries," (improvement where death was not expected within two weeks) before he died at home.

Unlike in the 1980s and 1990s, there are more options and choices today.

*I am so sorry for any family going through this, it is so difficult to lose a loved one.  Do make the best possible use of the time available.

Just wanted to say I'm sorry for your family. Hospice was great for my dad and helped my mother out so much especially the last couple of days. Morphine gives the patient a feeling of peace or so we were told.