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Is it normal for hospice to stop all medications?

22 answers | Last updated: Oct 15, 2014
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Q
An anonymous caregiver asked...
My mother-in-law is in hospice. They have told us that they are going to stop giving her any of her previous medications. Is this normal to stop all medications?
 

Answers
Caring.com User - Audrey Wuerl
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Audrey Wuerl, RN, BSN, PHN, is education coordinator for Hospice of San Joaquin in California. She is also a geriatric trainer for the End-of-Life...
71% helpful
answered...

Thank you for asking this question. It allows me to clarify what our goals are when a patient comes onto our service.

First, it is important to understand that See also:
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See all 17 questions about End of Life Medical Care
hospice care is comfort care as patients approach the end of their lives. (All patients need to have their primary care physician state their life expectancy is now 6 months or less.) Comfort care is also for patients who have completed all therapies"”and in whom cure is now futile. It is also important to understand that while cure is not an option, caring always is.

Secondly, most patients"”especially older patients"”are taking many medications and have for a long time. Hospice care does not "stop giving patients any previous medications", but rather, eliminates many that are no longer appropriate. By that I mean, those that really are not helping keep the patient comfortable. Some may even be causing more problems rather than solutions.

What is important now is maintaining a quality of life"”a reason to live. Hospice concentrates on managing pain and controlling distressing symptoms. Therefore, most medications now will be for pain and symptoms. Some other medications that were previously taken can be continued as determined by the interdisciplinary team; and, generally, if a patient wants to continue taking medications not related to their terminal diagnosis, they can do so.

As patients progress in their illness course, many changes are occurring in the body. Food may be unappealing, difficult to chew, swallow or to digest. This is normal. Fluids can also be a problem, and some patients are at risk for aspiration (into the lungs) that can cause pneumonia. This is one reason for weight loss. So too, all those medications that may have been important for your mother-in-law before, are no longer appropriate, or difficult for her to swallow. This is what I mean by goals of care are changing.

Talk to the hospice about your concerns. Generally, a little education for the patient and family help clarify these new goals, and puts everyone at ease.

 

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73% helpful
frena answered...

yes, it is normal. once the work of dying has begun, the emphasis is no longer on how to keep conditions under control. it is on peace for the journey of letting go of life. don't worry, it's okay. i've seen this done a numbe rof time in my caregiver life and it'll all be fine. Hospice will keep your mother-in-law in comfort and physical ease. bless them and you for calling them in. you'll never regret it. and when the time comes that your mother-in-law won't want to eat, don't worry about that either. the dying don't want to eat. it's okay. trust Hospice -- they're one of the greatest gifts to modern medicine and caregiving.

 

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laha1958 answered...

My mom has end stage AD, when we put Mom on Hospice, that was the first thing to go. It is no longer necessary to treat the patient, it is all about caring and comfort now. Mom was on Aricept for many years and once they took her off the meds it was like she came back to us for a few short days. She actually was making audible sounds and words! They told us that was normal and eventually she returned to her normal state. Hospice is a wonderful program. God Bless you and your Mom.

 

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daberg211 answered...

I also have been a health care provider for over 32 years, I have a hard time when it is a family member, my late husband had esophogeal cancer, I did take care of him back and forth to the hospital for radiation, and all that did was make him sick, he refused to continue, he was put on hospice, at home for three weeks, at that point it got worse for me to take care of him, I had to call the hospice nurse and asked her to have in him hospice facility, and yes we had to change his pain meds, as the morphine was not helping, they changed it to dilaudid, which did help him and with my experience when he asks for ice cream, and coffee, it was the way to let me know he was aware of himself that he would not last long, he only lasted another three days. I had to speak to my daughter-in-law, husband's daughter and sons, to speak with him and allow him to go. It was harder for the kids, because they would not believe me that that is was no cure for that cancer,and they spent more time with him that the 15 years he and I were married, when his diagnosis for cancer. Like I stated, there are times I did not want to be a care giver, especially a family member.

 

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An anonymous caregiver answered...

I have called in Hospice for my mom who is late stage Alzheimers. In fact as I am writing this I am sitting at her bedside. We called Hospice around Thanksgiving and the care she has received has been excellent. Hospice stop the meds that the doctor said were no longer needed. She remained on many of her meds, especially the ones for agitation. She came back from a very bad bout after Thanksgiving and made it through all the holidays making us all very happy. About two weeks ago she could no longer chew so hospice advised us not to push food on her and to keep her on Ensure three times a day and any other liquids she could take. This past Wednesday she could no longer swallow and can no longer take liquids. Hospice was here everyday this week with their comfort and support. I know my mom is going to leave us at any time now so I am praying she will go home in peace and love. Hospice is wonderful and know what they are doing, even if their advice is hard to follow it is best for your loved one. God bless you and my prayers are with you.

 

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Wib answered...

Yes, Hospice is wonderful!....My wife was cared for by Hospice for 3 weeks at home. Don't know what I would have done without them.

 

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An anonymous caregiver answered...

When my mother refused to eat or drink much after an initial good response to her surgery (at 94) & couldn't respond to physical rehab efforts, we initially believed that a nursing home/SNF would be the right place for her to get care. But when we realized that this would mean a PIC line, would only prolong her suffering, & remembered her wishes -- no nursing home, didn't want to "be like a bird in a bed," -- we reconsidered. Her MD agreed that she would likely continue to have bouts of pneumonia, would never be able to get around independently, and that another move to a strange place would be too stressful. So we made the difficult decision to move her to a hospice near her original home. They were incredible. While they discontinued some meds, they monitored her carefully, turned her regularly to prevent bed sores, and provided excellent solutions re: pain meds that didn't have to be swallowed. They were also extremely caring -- of her & of us.

 

75% helpful
laha1958 answered...

I recently answered on here regarding Hospice and meds. My Mother lost her battle with AD on Friday the 21st. The Hospice team was incredible. We couldn't have made it through this tough time without them. I would highly recommend them for any family members in need of comfort and care at the end of life. Many thanks to all of you and God Bless all of you on this forum.

 

57% helpful
Joy Wilkins answered...

My mom had cancer. Over time her treatments and medications were changed as her illness did. Last year before my mom died at home, hospice was called in and did a wonderful job keeping my mom as comfortable as they could with injections once the oral meds could no longer be taken. People from hospice care have a wonderful compassionate side to which I'm forever grateful. I'm happy that your mom and your family has they're help. My thoughts and prayers go out to you, your family and your mom.

 

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An anonymous caregiver answered...

I was a Hospice volunteer for years, and in my experience, if a person wants to stop his/her medication, and speed up the death process, it is up to them, unless of course, there is dimensia involved. It's their last way to "voice" their right to leave this planet on their terms. I have MS and have had for 30 years. I would hope that someone would respect my wishes about that if I were the patient.

 

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An anonymous caregiver answered...

My experience with Hospice was so horrible I could not read any of the comments. I am certain what my family went through is not what everyone does, so I will not say all locations are the same, this one in particular was a nightmare, and in my opinion should be shut down. The question I would like to pose is how does a staff member determine what time another person is to die. Our experience was horrible. I have instructed my family never take me to a Hospice facility. My mother was ill, was not at the end of her life. I fought to get her out of this place and won, I do not believe all people will be of a frame of mind at this point to fight for what is in the best interest of their loved one. Also when you trust the staff in charge to be knowledgeable and rely on their experience, it may be easy to manipulate the situation at the time of high emotions. Mother only had pneumonia. Why we were at Hospice you ask? It was because the hospitalist doctor that was suppose to be treating my mother discharged my mother ( and has a pattern of this), said there was no longer anything medically that could be done for her. Mistakes had been made in my mothers treatment at this hospital. The social worker knew she was too ill to go home, and suggested Hospice. She should have said call an ambulance and transport to a different hospital ER. After a royal battle with the nurses at this Hospice trying to get me to sign do not resuscitate directions, I got my mother out of there via ambulance. The new hospital was stunned at the series of events that brought my mother to their hospital, but taking this action saved her life. The delay in treatment made it a challenge for her to get well, she was in the hospital for a week, and when we first arrived she was critical, another hour and she may not have lived, according to the doctors. Today my mother is enjoying life and we are thanking God for the blessing of having her with us, and for the emergency team in the ambulance and the new hospital staff that said there was no excuse for what had happened. Please understand I guess there are times Hospice is appropriate. I just never saw the checklist that says it is your time to die, so we will prohibit any medical treatment and help escalate death. I saw other patients at this facility that were begging for help, yet no one came to their aid. This location was like multiple rooms of horrors. This is not the way human beings are to be treated when they are ill. My best to you, I hope your situation is not the same as what my family experienced. I also want to mention, I was softly singing the song Hallelujah in my mothers ear while we were in hospice to comfort her, I do not know how this person heard me, but she came and slammed the door to my mothers room... I still wonder about the motive of individuals in certain situations. Again, this was what I saw, and went through with my Mother, and I hope is not the normal treatment loved ones receive at Hospice.

 

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frena answered...

that's a very sad experience to undergo. and may well be due to wrongful treatment, in which case you should certainly pursue all means of ensuring that place can't do that again. the kind of building you describe does indeed sound like a horror house.

however, perhaps you don't realize that actual Hospice programs in this country rarely are buildings to which people go. Most of Hospice services in the USA are brought to people in their own homes, via trained staff, nurses, aides, and whoever else is needed to ensure that the person receiving Hospice care , AND their family members and caregivers, get the fullest support.

 

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Squeakie answered...

If you believe that the treatment at the hospital was sub-standard, you should inform them of that in writing, with details. You can also contact your state Health Department, & JCAHO, the hospital accreditation organization, to lodge a complaint. I'm sorry that your experience with hospice was so negative. Ours was not perfect 24/7, but we spoke up on the couple of occasions that we felt a staff member had not acted appropriately, and our complaints were acted on.

 

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wenn607 answered...

My mother also recieved Hospice care. The day the nurse came, she changed my mom's medication from oxycodone to liquid morphine. I noticed the change in my mom immediately. She did not act the same at all. She could not even talk to me anymore. Just the day before she could. They said it was her body and brain shutting down. I do not believe this. They were not there the day before. Everyone in my family seemed to believe the Hospice workers and that was that. My mom died a couple of weeks later. I wish I knew what that drug was going to do to her before it was given to her so I could have had a better chance to talk to her before she died. I know it was the drug and then, yes, her body. They also said she would only act "out of it" for a couple of days until she got used to the new medicine. I couldn't bear to even see her. I was there the day she died. I held her in my arms and cried. I saw a tear come down the side of her face. Does that mean she could hear me and she knew it was me? I hope everything is ok with you and your family. I would just ask what the pain meds will do and how she may react.

 

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Suzanna answered...

That is what they did to my mother and to my father and I consider Hospice a nightmare with no hope just a place to die because the gov. of the Us(medicare and medicade) has instructed patients that are considered beyond help and need to leave the hospital and go to hospice with no meds and no Iv's and sometimes no pain meds if a nurse doesn't come in to check on them then the loved ones of the patient will need to beg them for pain meds from the doctor to their loved ones so they can die with 'NO PAIN" .I will be put on a tropical beach in a tent with wonderful breezes or even a hurricane with sharks in the ocean waters before I go to hospice to die. I wish I had not listened to the hospital and doctors when my parents died in hospice but I did not know they promote a so called" peaceful death"and that IS JUST WHAT HAPPENS. How disgraceful can we get...our government just does not want to spend money on what the hospitals throw out. Especially when you are very old and you need to make room for more paying patients that the doctors can legally run up a big helpful medical bill in the hospital. Sad but true.

 

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frena answered...

dear Wenn607, i'm so sorry this troubles you but, yes, do know that your mother did indeed know you and understood your sorrow. many studies have shown that brain consciousness continues way beyond what we used to think and we've also learned from extensive experience now of people in comas that yes, they hear and see everything and the dying understand in the same way. so that single tear was your mother's message to you -- i hear, i see, i love and sorrow will pass.

with regard to Hospice, while i guess no-one else is perfect so why would Hospice be -- nevertheless my experiences with them have been profoundly special.

i think often we in america are so deeply avoidant of everything to do with death and dying that we don't recognize it nor know what to do. most suffering older people i've been with are more than ready to be free of their bodies and released to spirit and that is, after all, the inevitable end to all human life.

you did the journey. you walked with your Mom all the way and she knew it, all the way. and, i'm sure you notice many ways in which you can still sense the presence of your mother.

morphine is different from most other painkillers in that it gradually suppresses the action of the lungs. it also removes all pain and fear and allows the spirit to go free. so you probably did see a difference. but that difference is also what you see in the dying even if they aren't on morphine. there comes a time when the dying turn attention inward and onward, because they are preparing for the great onward journey of spirit. they become very absorbed indeed inside and seem to find it hard to pay attention to the outer world of human society. that too is normal. Hospice didn't do that to your mother. the journey of dying itself did that.

but she didn't miss a moment of you being there. i do know that. perhaps if you talked to her in your heart or your mind or out loud if you have privacy to do that, and shared all this. i suspect you would begin to find less sorrow gradually and more connection.

give it a try, without being prejudiced about or self-judging and see how it feels. it just might help things to become less stressful for you. all my good wishes for your journey now.

 

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An anonymous caregiver answered...

When my mother was in the hospital, everyone was pushing "comfort care" or "hospice". And I mean everyone, from doctors, so called "intensivist", "palliative care doctor", nasty social workers, nurses, etc. They got nasty when I refused. Palliative is just another fancy term for comfort care, and comfort care is just another way of saying they want my mother to die, that they do not want to treat her anymore. They have no right to do so, if the patient and family members do not agree. Doing so is against Medical Code of Conduct and Ethics. Well, the day of her discharge, my mother's X'ray report indicated that her pleural effusions had gotten much worse than the previous X'ray (3 days ago), and the X'ray doctor cannot rule out pneumonia. The Intensivist did not treat her for pneumonia. There were no medications prescribed for pneumonia nor were there any treatment done to relieve her fluids from her lungs. Instead, this death doctor rushed and signed her Discharge. My mother had pulmonary failure 7 minutes in the Transport and died 4 hours later.

 

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Jan99 answered...

Suzanna, I totally agree with you. I couldn't have said it better. ".our government just does not want to spend money on what the hospitals throw out. Especially when you are very old and you need to make room for more paying patients that the doctors can legally run up a big helpful medical bill in the hospital. Sad but true."

Unfortunately, we are rare these days. Most people I talked to are in the "death panel" catogory, especially medical related professionals. I fought these real hard, but the "death doctor" assigned to my mother the last 3 days led to her death. She was not treatment for pneumonia and critical pleural efffusions. Instead of treating her, she signed the Discharge papers, and my mother was sent out of the ER to her death, 4 hours later. I filed a complaint with the Medical Board. She had no right to withdraw treatment when I, as family member and Conservator, have not agreed to do so.

 

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Saltyone answered...

@jan99' you are so right. You just have to laugh at these so called "care -givers" who can't help but pat themselves on the back for their heroic profession. All these people do is murder under state sanction. Hospice was once an honorable profession worthy of our admiration. Now it's all about money it's run by Corporations to line the pockets of those in charge. These health care providers are delusional. Watch out people you are next.

 

Anonymousity answered...

To second from this comment, same here, hospital pushing comfort care as a confusing option to Stop medications, My relative cared for totally at home, had sudden shortness of breathe and couldn't hold food,. Rush to hospital to have a gastronomy tube put in for feeding and better medication administration. These killers refused everything and insulted it further by having blatant discussions at my dear relative bed side, all my social cognitive love therapy down the toilet,These killers looked like Parole officers at a state prison, My relative was able to make a two hour trip, and they refused to drain pleural effusion fluid, had days of IV fluid to fight infection in no time was I told of improvement til they stopped the medications, cornered me to agree to accept hospice at home, after agreed, arrived home to prepare the house, they called me with a code blue, my relative has passed,. They were managing find with nasal oxygen high pressure, just needed food, and would have done well will nutrition and lasix, They saw tardive dystonia, spasms as something other then brain disease,. I now am suffering an unimaginable grief, my oath to care for them til the end was disrupted by these barbaric animals talking comfort care, Comfort care is my relatives recliners, flat tv, sunlight in their window every morning, their favorite music playing smoothly all day in the background,. All we needed was treatment, for improvement the gi tube to not be refused and above all else, for them not the refuse our family's decision. That is comfort,... If anyone feels this comfort you are mistaken, you are hastening someone's death, enjoy your trip nurses to hades!!!!

 

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flpagriffin answered...

I have MS and have had it for at least 21 yrs. now. I'm preparing a living will so that, I am never to be given a GI tube. At the very least, they cause irritation and quite often, cause an infection. It would only increase my discomfort and prolong my suffering. Any life does not constitute living, to me. Without quality of life, it is merely existing and, I don't care to merely exist.

 

TheNursesWereGreat answered...

The doctors stopped most of my mom's medications too. They told us they would stop food and water too except for administering medication. I thought that sounded like some sort of torture. I didn't approve of it, but my family thought my mom was no longer living by being confined to a bed. I told the signer of the healthcare proxy how upset I was about it. My mom had a stomach tube because her esophagus was blocked due to esophageal cancer. She was in a hospice in Boston for three weeks. She ate during the first few days or so, but her food went back up her esophagus and into her lungs. The backed up food had to be sucked out of her lungs, so they stopped feeding her with our consent because feeding made breathing difficult. My mom only got hungry once after that and never asked for food again on her own. I think the nurses were very attentive at the hospice. They gave us a booklet about what to expect as the patient dies. The booklet mentioned a drop in urination, no longer hungry, excessive sleeping, moaning and the patient may try to remove his/her gown among other things. It was a hospice, but the booklet never mentioned the effect of morphine. I think they market the book to try to calm the relatives as much as comfort the patient. Under the conditions, the relatives don't want to know the details because they are too busy grieving. I had to research that online. I know my mom needed morphine for comfort. I gave her 1 ml twice a day before she was in hospice. What bothers me is that the morphine was inducing behavoir in my mom that I never saw until the levels of morphine increased to 2 or 3. The most any patient on the ward got was 30 according to one nurse for severe pain such as bone cancer . Anyhow, one early morning my mom was so affected by the morphine, that she tried to rip the gown off her body and the catheter out from her legs. I had to wrestle with her to stop her thrashing about. I am 6' 3" and she was tiring me out at 4 AM. She was normally very modest and didn't want to be naked except in the privacy of her room. I had to buzz the nurse to come in and knock her out with more morphine. My mom was so medicated, she was out of her head and was probably now just a dying cancer patient/drug addict now hooked on the morphine.
My mom lost her voice one week before she died. The doctor told us her thyroid cancer was shutting off her blood supply to her head and possibly affecting her voice. I don't know if morphine was responsible for that effect. It was awful. She went from bright eyed, and conversational one morning to her face drooping and not being able to talk within a few minutes. Ask for a pain killer other than morphine so you can communicate with your loved one. Maybe eventually he/she will need morphine, but morphine does awful things to your body, but it also frees up the nurses to work on the other dying patients. The nurses can't spend all their time in your loved one's room.

 

 
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