Is hospice over-sedating my mom?

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Is hospice over-sedating my mom?

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This might be a common question. Mom was signed on to hospice nine days ago. She has COPD, dementia and early-stage heart failure. She is in Memory Care. The staff has stated her most severe condition is COPD and that is what she is mostly being treated for. Prior to hospice, she was alert and going down to meals each day and participating in conversations. She did have a dry cough from COPD and labored breathing. Hospice recommended a small dose of morphine to reduce the cough and as they explained "to relax the airway." They started that one week ago. Since then, mom's cough got better, but she has been in a glazed over haze ever since. She is barely alert. She sits in a chair and has delayed responses to everything around her. Yesterday, I talked to the hospice nurse and told her I thought it was too much. The nurse disagreed and said mom needed it to prevent "air hunger" and is more comfortable with it than without it. I felt like if I disagreed too much, I was depriving my mother of "comfort." What is more, is that the hospice nurse said staff told her mom was not sleeping through the night and needed rest. I told her it is likely because other medications make her drowsy and she sleeps during the day instead. I asked about alternatives to facilitate sleep that did not involve further drugging my mother, but she did not engage in that conversation all. She said to regulate mom, they recommend Seroquel. Mom is currently on a low dose (25mg), and she recommended increasing it to 50mg at night. I told her my mom is already too "doped up" and I did not agree with adding another sedating medication. I pointed out that my mom is only 95 pounds and asked what the two strong new meds would do to her. She did not give me any answer and kept saying mom needed both meds "to be comfortable." My sister has POA for her. I do not have much of a relationship with my sister so coordinating plans is nearly impossible. At 9:00 this morning the hospice nurse sent a text to both me and my sister that the facility staff left an "after hours" message that mom's condition had gotten worse overnight. First - Why did it take hospice until 9:00 in the morning to update on an urgent change reported in the middle of the night?

I went to visit mom and talk to the hospice nurse, and mom was lying in bed and barely responsive. Her mouth was open, eyes closed, and breathing was labored. In spite of my objections, the nurse said they increased the Seroquel dose to put mom to sleep last night. My mom was a zombie this morning, and even more of a zombie than just 12 hours earlier. The only change I know of is they increased the Seroquel. On top of this, the nurse said they want to start mom the Ativan and Morphine combo. I know what that means. It means mom goes completely unconscious and unresponsive until the end which is likely within hours to days. Is this the way hospice "allows the body to die naturally?" It seems more like putting a pet to sleep to me.

End of Life Hospice Medications

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They're not trying to put your mom to sleep, as a pet would be, but to keep her comfortable, especially with breathing issues. Only your sister as POA can fire hospice or tell them to discontinue meds she disagrees with. Can you find a way to speak to your sister about your concerns? Maybe you can come together on this issue, Idk.

This is a very difficult time for us, to watch our mother's decline. I too wanted to blame hospice for overmedicating mom so, as POA, I told them to dx the Ativan which they did. Mom was still out of it and continuing to decline w/o it. Sometimes a decline coincides with an increase in meds. What I do know is this, your poor mom is 95 lbs with dementia and COPD working against her at this point. Allow her to get the comfort care she needs so she can rest and relax at this point in her journey. It's hard, the hardest thing you'll ever witness. You'll second guess yourself. You'll second guess hospice. You'll rail at God. And you'll cry. I went through it twice with my parents. It was their time to die. Idk if hospice sped up their journey by a few days, and in the end, I don't care. Because they were both at peace when they did cross over to meet God.

Sending you a hug and a prayer for peace.

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Reply to lealonnie1

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Absolutely agree! I hope that when my time comes (in the not-too-distant future since I'm 89) no one will object to the maximum in comfort care for me. So, I make my Final Exit a few days sooner than I might have with less medication. I'm no longer "living" but rather existing at that point, and to what end?

(5)

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I don't know if our experience is typical, but my FIL was hospitalized multiple times over several month time frame. He was fully of sound mind but his body was dying. He told the Dr that he was tired and wanted to know what it would look like to go on hospice. The Dr was very honest. He told Dad and our family that if Dad chose to, he could go home on hospice with all medications stopped except for comfort meds. This meant that they would administer meds to keep him from having pain and/or anxiety which would have the result of strong sedation. Dad passed peacefully in his sleep about a week later. Prior to the hospice decision, he was alert, walking, eating, talking, and fully cognitively aware. But his body was tired and dying. It was very sad and heartwrenching to see him go from fully functioning mentally to fully sedated. We hated watching it. But the sedation allowed a peaceful passing without agitation or anxiety. I wish every Dr would take the time to gently and kindly explain hospice to all family members so that they can be prepared for what it looks like. It is okay to be sad, heartbroken, and hurting at this point of your mother's journey.

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Reply to Stahtah

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Thanks. I think overall I understand what you have stated.

I suppose sedation makes the dying process easier, for lack of a better way to describe it. Of course, they are "peaceful" - they are out of it.

Yes, it is the hardest thing to witness. Yes, I am second guessing everyone in the process.

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Reply to GingerMay

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This is natural. Just know this is what your mom wanted.

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My dad did home hospice so it was me that gave him the meds. The first thing that stunned me was when upon the intake hospice discontinued most of the many meds dad had been on for years. All were meds we’d been told were vital, yet when they were gone, there was zero difference in dad at all. He’d had progressing CHF for a long time. When his decline began it was swift. I used morphine, Ativan, and haldol with the guidance of the hospice nurse, mostly just the first two. The morphine did ease the struggle to breathe, and the Ativan helped keep him calm. I considered them a gift. If they shortened dad’s life by a few hours that’s also a gift, though I’m not convinced that happened. While you’re watching this all happen, there’s tremendous doubt and worry, it all feels very unnatural and strange. Somehow we think it’s too fast and maybe shouldn’t be happening at all. Yet we’re seeing a natural process, one being helped with some meds to keep things calmer. I’m sorry you’re in this place, I well remember how tough it is. I wish you and mom both much peace

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Reply to Daughterof1930

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If your mom is Medicated and still having labored breathing, she is entering the actively dying phase.

Would you rather her more alert but anxious because she can’t breathe? Have you personally experienced labored breathing and air hunger?

Your mother or her POA chose this route because it’s what your mother wanted.

It’s jarring to watch someone die. This is not a bad death— there is such a thing as a very bad death and you don’t want that for your mom, trust me.

I’m so sorry your mom is dying. HUGS.

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Reply to southernwave

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Hospice is providing their tried-and-true method of end-of-life care to your mom. You can't expect her to be the way you want her to be when dying requires her to be a completely different way! You wouldn't want her to be awake and chatty but screaming in pain.

Let Hospice do what Hospice does. Your mom has lived her life, and she was lucky to have a kind and concerned daughter who cares about her. Step back from decision-making. That's not why you're there. Hold mom's hand. Pray with her if you like. Tell her you love her.

That's what I'd want my daughter to do for me.

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Reply to Fawnby

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It is time to say your goodbyes. I can tell you in my mom's final day, her Ativan was delayed and I was visiting. I could see her agitation which is why she needed it. Rather than being comfortable, she was tossing around in bed trying to get comfortable. It would take the med a while to finally get her to settle again

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Reply to MACinCT

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Morphine does make it easier for them to breathe. I understand what you see in the media about overdoses but in reality it is not that easy to overdose on an opioid, especially if a nurse is providing the dose. It is much more likely that your mom was breathing heavy because she is getting close to actively dying, or may have already entered that phase. The heart failure and COPD alone at the end make them start to gasp for air and get fatigued. Without the morphine your mom might be much worse. Morphine can produce a burst of energy in some people. No one is trying to put your mom "to sleep", she is just likely nearing the end of her life.

If you do demand to take it away and I hope you will not, yes, you will be depriving her of comfort. Her organs might be shutting down as well, which is painful. I'm sorry this is happening, it is very sad. I hate to see people so terrified of these drugs, especially toward the end when they are very very helpful for keeping a dying person comfortable. I truly wish I had been able to convince my mom to take the morphine earlier.

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Reply to SamTheManager

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Thank you again everyone. This all makes sense, which is hard sometimes to see through the grief. Mom is on the routine hospice meds and I did not object.

I visited her this morning, and she was resting peacefully in bed. I held her hand, told her I loved her and that I knew she loved me too. I thanked her for being a good mom. She was still able to grab my hand and mumbled some words, but I could not understand. I talked a bit about how much fun I had as a kid growing up in the old neighborhood and how she and my dad always made a nice home for me to keep coming back to as an adult. I am a believer, so yes, I also prayed.

I had asked the hospice nurse about getting a catholic priest to visit my mom since that is our faith. Ironically, as I was entering the facility today, the priest at my church was walking out. I stopped to say hello and he told me the name of a woman he just visited and asked if it was my mother and it was. I started to cry like a baby. I had wanted to see him, and there he was. He was able to give comfort to my mother and also said a few words to me that touched my heart and gave me peace. I do not know how that all came together, but I am grateful for it.

Thank you everyone. I think I am OK with this.

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Reply to GingerMay

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Perfect, what you did is exactly what you should do. I’m sure she enjoys the trip down memory lane.

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My mom was against morphine for those who are dying saying it would kill them quicker. I got to watch my dad struggle to breathe for days on end. Morphine is not there to hasten the end, but comfort the patient. They don't deserve air hunger while dying. I wish I had known enough to stand up to my mom and demand dad get the comfort he needed.

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Reply to JustAnon

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Thanks. Yes, watching a person struggle to breathe is indeed awful. Doing nothing to help as the condition worsens is also awful. She does seem more comfortable. She is not coughing as she used to. I am starting to see how this works and I think I get it.

(10)

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Every situation is different. Here's what happened with my grandmother. She didn't have acute problems other than age. She was mobile and coherent. It was the mobility that was the problem. She fell, hurt her ankle and had to be a SNF for a while. A day into the SNF it was like someone hit the off switch. She went from alert and cranky to zombie. She was not responsive at all. She just kind of stared off into the distance. She didn't even move on her own. If you put a straw in her mouth, she would drink. But she wouldn't eat. A couple of days earlier before she fell, she had a healthy appetite. She had no problems eating on her own. I don't see how it could be anything but the pain killers. I know she was on morphine. Hoping that the SNF knew what they were doing, I just went with it for a couple of weeks. Then one morning I came in and I thought she was dead. I couldn't really tell if she was breathing. I knuckled her chest and there was no response. So hit the call button. Someone showed up and took her blood pressure. It was really low. 60/30 if I remember right. I was concerned. They weren't. They said it was time for a hospice facility. I took her home instead thinking it would be better for her to pass there.

But what happened? They sent me home with plenty of morphine. I didn't give it to her since she didn't seem in pain. She was a zombie at first. When she did stir she didn't seem to be in that much discomfort. So I gave her tylenol instead. It seemed to do the job. It took a few days for her to really start waking up. She was pretty alert again after a couple of weeks. A month later she was back to her cranky PITA self. She was that way for a few years until she finally went on hospice. It was during covid so it was home hospice with me as the "nurse". Again there was plenty of morphine available. In fact, it was the first thing to show up before even the diapers. I didn't use it then either. She was alert and coherent and she wasn't saying she was in pain.

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Reply to needtowashhair

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I applaud you for assessing the conditions and making independent decisions. I think overall hospice is beneficial, but also wonder if they just apply the "one size fits all" approach because it is easier for them. Easier for them to deal with patients who are zombies and compliant too. I visited my mom yesterday morning and she was responsive, replying to things I said and able to hold my hand. The hospice nurse called her "agitated", ordered the morphine more frequently, and when I returned to visit mom later in the evening, mom was a zombie and unresponsive just lying there in a ball. I would have preferred another approach to address mom's "agitation" besides knocking her unconscious.

It is just so difficult to witness. Mom also was never in any pain. I am not entirely sure I will ever be convinced hospice deliberately keeps patients in a zombie status when other options may have been available.

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I think hospice tends toward over-medicating. The primary function of hospice is to provide strong medication for patients who are suffering from unbearable pain, fear, and difficulty breathing. When you call hospice, you're letting them know that someone is in their final days of life, are not seeking life-saving treatment, and you want comfort care for them. Sometimes keeping them comfortable means keeping them unaware, relaxed. I can only imagine how scary and uncomfortable it would be to struggle to suck air into my lungs.
If you want her to "die naturally", with labored breathing, then discontinue the drugs and let her suffer a natural death, gasping for air.
For what it's worth: It is not uncommon for people to go into an unresponsive state for days before dying, naturally. It's just part of the process of the body shutting down.

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Reply to CaringWifeAZ

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Unless you are willing to be by your mom’s side 24/7 to monitor her comfort level and decide when or when not to give her more medication, it is hard to question if hospice is responding appropriately or how you would. What are you expecting? That she will be both comfortable and fully alert and responsive? That might not be achievable. She’s dying. It’s never pretty. But if you are lucky it won’t be painful and traumatic for the person dying. Our comfort with what is happening is secondary.

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Reply to ShirleyDot

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I would want morphine for myself to avoid air hunger when I cannot breathe well enough on my own. Also the Ativan or whatever anti-anxiety medicine the Hospice uses. My own choice is for comfort over mental clarity.

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Reply to RedVanAnnie

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In every hospice situation I've seen, they help people die and I've always thought it was overmedicating. But It's hospice so that's what they do. It's hard to watch - especially if it's taking several days or weeks.

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Reply to Lander22

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As a hospice volunteer, I have to say this has never been the case in the many, many cases I've been involved with. Hospice's job is not to help people die…it's to help them navigate life as comfortably as possible as it draws to an end. Sick of people bashing ALL hospice programs.

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it sounds like you are making it through the journey just fine. Trusting hospice and letting go of the desire to have your ‘normal’ parent - sleeping well, days and nights not mixed up, breathing well, etc- is just not in the cards at the stage of life your mom is in.

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Reply to AliceLS

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In 2014 when my mother was dying, she was given morphine about every 15 minutes for stomach cancer pain. About one week before passing, she required oxygen therapy for her labored breathing from congestive heart failure. She passed peacefully at age 95.

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Reply to Patathome01

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I have a different point of view than others. My husband with FTD/ALS was hospitalized for 9 days with aspiration pneumonia with sepsis symptoms. The hospital was able to pull him back from the brink with intense IV antibiotics, etc. He was then evaluated for In-house hospice placement, which I agreed to. When he arrived at hospice on a Thursday afternoon, he was alert, happy and comfortable. Our adult children were able to engage with him. However, upon my return the next morning I found out they gave him a series of Atavan and morphine because he was supposedly "agitated' through the night. Needless to say, he was 100 % sedated upon my arrival and missed out on seeing his sister and brother who drove from out of state to visit with him. I was livid. I do feel he was overmedicated immediately upon hospice intake, and I was quite upset about that as it was not necessary at that time. He was not imminently dying - as they seemed to think. I arranged to take him home within days, on In-Home Hospice, where has been for over two months perfectly alert and basically pain free, except for muscle rigidity. He takes Tylenol daily per the nurse. He is able to visit with his children and friends in the comfort of his home. He is only on 25 mg of Serequel at night to assist with sleep. His breathing is fine, but we do have oxygen handy should we need it. I realize he is in end stage FTD and he is completely bedridden due to the ALS but he is comfortable and content, for now. The "comfort drugs" are in my fridge should I need them.

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Reply to Capecodgirl

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Your experience mirrors mine with my grandmother. I also took her home where she did much better being off the pain meds. I posted about that elsewhere in this thread.

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Don't forget Ginger......you can fire hospice at any time. And take mom home to administer pain and agitation drugs when you see fit. You can also tell your hospice nurse not to medicate mom at all unless SHE asks for them. Just a reminder.

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Reply to lealonnie1

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She doesn't have POA.

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You can ask the dose of Morphine reduced.
Typically most medications are started with a common dose but that common dose may be to much for some and not enough for others so adjustments are made. This is true for a LOT of medications.
See what happens if her dose is reduced. Does it still relieve the cough but allow her to be more "present". If so then it is a win-win. If the reduced dose does not help relieve the cough then you increase the dose or try another medication. There are other meds that Hospice can use they just get the Hospice doctor to approve it.
And with the Morphine is it possible that the Seroquel can be reduced or eliminated? This might help as well.

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Reply to Grandma1954

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Hospice always over-medicates. Did they try giving your mother some oxygen therapy if she's laboring to breathe, or some nebulizer breathing treatments? If she was holding conversations and taking part in activities only a couple weeks ago was she so ill that she needed hospice care?

I've seen people go into hospice care, get drugged up, then graduate out of hospice because it turned out they really didn't need it in the first place.

Did they even give her oxygen or nebulizer treatments?

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Reply to BurntCaregiver

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I wouldn’t say they always over medicate. My MIL was on hospice almost a year. It made it much easier for her to get her fentanyl patches which she already needed for compression fractures and she had additional as needed meds for break out pain from her terminal cancer. She continued to live her life in AL as she very slowly lost more and more weight. I think she lived so long BECAUSE she was on hospice and everything was done for her comfort, other meds were stopped, she didn’t have to deal with treatments or medical appointments and she could just live. At the end she wasn’t drugged up on extra meds, she just stayed in bed that day and then was gone. No one rushed her out the door.

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At the risk of telling you what you already know, i'll first apologize. Hospice treatment is simply managing pain and comfort. Patient is deemed terminal. So in my view anything that makes her more comfortable is better. Being more alert might run contrary to that. They're treating discomfort with opioids and narcotics. It's a personal decision but i'd be fine with it. The distinction in my book is the patient is terminal and the goals are now different than before.

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Reply to firsttimer1

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Fil had his hospice papers signed yesterday. Right after, the doctors were asking us if it was ok if they administered morphine if he showed discomfort. Aren’t doctors fully entrusted to do that even if the pt is not hospice bound?

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Reply to PeggySue2020

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Is hospice over-sedating my mom?

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