Hospice Care/Bowels Shutting down in dying person with COPD
QUESTION: Hello, my name is Rachael. My grandmother has been fighting her COPD for many, many years.. along with high blood pressure and diabetes. Back in December 2012, my grandmother went on hospice, she is 65. The past several weeks have been rough. She did not have a bowel movement for over 20 days, so the hospice nurses decided to take her in and get xrays. Note, we tried everything possible for her to have a BM. Anyways, when we took her in, the dr's gave her 24-72 hours because her bowels and small intestines have shut down. She has a IN G-Tube which is draining fecal matter, pills that she was given weeks prior and food. She is not craving food and only takes a few sips of water but the tube in her nose flushes it out as fast as she swallows. Her doctors are confused because she is still here with us. The past 2 days, she has had bowel movements....even after the had completely shut down. Im not really sure what is happening, my guess, is the gases built up in her is causing her colon to expand which is allowing some fecal matter that had been built up over the past month is being passed through... My grandmother is on a continuous morphine infusion pump, lorazipam (spelling) and liquid morphine under the tongue. Her hands look like she is starting to mottling but then again, I'm not real sure considering she should have died a week ago.. Her urine output was stopped for 40 hours but then some started coming out which is almost orange-ish red....(she has a catheter)... I've done some of my research but I am at a total loss right now. Please give me any information that you have available. I apologize that my message is all over the place, but its been a rough week. My grandmother is my best friend and lord knows I don't want her to go, but I don't want her to suffer anymore.... no one deserves this.. Thank you and have a Blessed day
ANSWER: Hello Rachel, thank you for writing to me. I am so sorry that your grandmother is so ill.
What you are describing does sound exactly what you think it is: gas has built up and has pushed bowel contents out. The fact that the NG ("nasogastric") tube is draining fecal matter and old meds and food is convincing evidence that she has some kind of blockage.
This is not uncommon at the end of life. Digestion and elimination are not important any longer and the body devotes its energies to maintaining just enough life to get the process of dying completed. I too am somewhat surprised that she is still alive, however, I have learned that there is no sure way to predict when the end will come.
It does sound as if she is receiving very good care and appropriate medication. You do not indicate whether you believe she is in pain but I suspect that if she were, you would have said so. I am comforted to know that she is receiving good medications and good care. It does not sound as if she is suffering.
You are not at all "all over the place," and your spelling of lorazepam was actually pretty good!
I do not think your grandmother is suffering at this point. Your description suggests to me that she is not feeling pain or anxiety, which is the best we can hope for at the end. Her body will finish shutting down when enough of the functions which sustain it don't work any more. I'm not sure what to tell you, except that this situation gives you the chance to tell her what you told me: that you love her, that she is your best friend, and that you want the best for her and will do anything to help her.
I have had patients who seemed to be fine one day and were gone the next, others who I thought surely would not last the week and two weeks later were still here. I have learned to respect and be amazed at the marvels of the human body, to hold a hand, to feel the ache, to celebrate the life and to watch as the last light, as it were, is turned off.
The best thing I can tell you is to say the things you would want to hear if it was you who was dying--tell your grandmother how wonderful she is, how much you love her and that you'll see her when your time comes. And, difficult as it is, wait.
Take care, write again if there are other questions or if I can be of any help.
Peace to you, your family, and especially your grandmother,
---------- FOLLOW-UP ----------
QUESTION: Thank you so much for the information. I have been my grandmother's care giver besides my grandpa and watching her fade away is the hardest thing but I am strong and will keep going on for her. It just hurts knowing our time is limited. The nurses decided to take her Tube ) because they are pretty sure her bowels have "re-awakened" but I on the other hand, seem to disagree. They are making her eat but she can hardly swallow and when she took just a tiny bite of toast, she became very nauseous. She hasn't really eaten in a little over 2 weeks and the fact that she has been throwing up fecal matter, why even bother giving her food.... :(
She is Incontent (spelling) and instead of getting her up out of her bed, I decided to get her adult diapers because there have been so many accidents in the bed these last few days ( after not having a bowel movement in over 30 days.. she went into the hospital after not having one for 20.. ) -- and she doesn't realize it.. Such an easier clean up and the fact that we are practically lifting her up and sitting her down on the bedside commode. She is growing weaker and weaker by the day... anyways, her stool is very, very dark and almost as if it was similar to tar. The odor is something fierce. I feel so sorry and helpless for her but I'm doing all I can.. Her bedsores are getting worse. Practically her whole bottom and tailbone area has turned purplish. And that's really the only area that she complains about hurting. Her hands look as if she is mottling but her feet look fine. Her vitals yesterday were good.. Today, her stomach has gotten bigger since we took her tube out a few days ago and she is starting to turn this yellowish color.. not real yellow, but just a "glow" to her.. I don't know if that makes sense to you are not but that's the best I can describe it.
Oh, one last thing....all the fluid that had built up these past several weeks in her arms and hands are no longer. If you were to pinch her skin on her hand it will stay. Is that caused from dehydration? She is hardly taking but a few sips of coke (what she prefers that and ice chips) and her catheter fills up fast, but the color of her urine is a dark reddish/orange. With that being said, where is the urine coming from or is that the access fluid in her draining out?
I apologize that this is rather lengthily but I am asking as things happen. I've learned quite a bit the past several months and even though that this is a very difficult time, I wouldn't have it any other way. I've been by my grandma's side all my life and I wasn't about to let her go through this journey alone.. we've made some memories along the way, that is for sure!
Again, thank you so much. God Bless You and Goodnight :)
(Note: much of what I have written is based on the belief that your grandmother--and you and your grandfather--does not/do not want her to remain a hospital patient until she dies. If I am wrong about that, please take that into consideration as you read, please. --CJ)
When your grandmother passes and you have time to recover, you should consider entering the nursing profession. You would be excellent: you see the whole picture and you make sense of a person's experience. You are ABSOLUTELY right about not forcing your grandmother to eat. That makes no sense, and no decent hospice nurse would EVER force a person to do anything. The current standard of practice is that, without a court order, forcing a patient to do anything they do not want to do is a criminal offense (in Texas it is assault, it's probably considered something else in other states).
If your grandmother does not want to eat, do not permit anyone to force her. Offer and if she refuses, then take it away. Same with fluids. She should be receiving plenty of pain medication and anti-anxiety medication. It also sounds like it would be good for her to have something for nausea--there is actually a patch for behind the ear, and other meds that can be applied to the inside of her arm, on her skin. I would not use a suppository at this point--one, there is the dignity issue and two, her bowel is a mess.
The loss of the excess fluid in her arms (and other tissue) is probably a good thing, and the fact that she is putting out urine is also a good thing. The color of the urine indicates concentration (and possibly dehydration but not necessarily) but also that she is getting rid of wastes. Sounds like her kidneys are working hard! The "tenting" you describe with her skin is indeed dehydration. If she wants coke and ice chips, she should have all she wants. Water may taste very nasty, given that she is very ill and (as you have probably experienced--I know I have!) when we are sick, tastes change and water (which we need) tastes just terrible. Give her whatever she wants, whenever she wants it. Anything else is pointless. She should have as much enjoyment as you can help her have.
The blacky tarry stool you are describing is blood. It has an odor that is very distinctive and will knock you over. More than likely she still has an impaction, and her bowel is frail, so the chunk of stool in there is eroding the surface of the bowel. (What kind of nurses are caring for her???) The black tarriness suggests the bleed is up high in the digestive tract rather than lower (the closer to the bottom, the redder the blood, if that makes sense).
Get an "egg carton" mattress or even better, one that has air circulating in it (there are several brands). If the hospital did not provide at least one of those, consider suing them, and make them get her one NOW. (I'm serious--that's abuse of a vulnerable patient.) When you get her home and hospice takes over, make sure they also provide one of those mattresses. Meantime, keep her on her side, one side or the other, off of her back, and move her about every two hours if at all possible. If her lower back is her "only source of pain," then she is hurting--turn up the pain medications. Seriously--she's letting you all know. It sounds like you, Rachael, are the only one who hears her.
Do not worry about making anyone mad or offending anyone, be your grandmother's voice and get very pushy. If you do not get what you want, ask to speak to the "house supervisor" (you can ask for the "house soup" and it will sound like someone who knows something about hospitals is coaching you--which will sometimes get you a little further a little faster). Do not wait for the hospital to call the hospice, you do it. Even your grandmother's doctor does not get a vote that is stronger than your grandmother's (or yours or Grampa's, whoever has legal control).
People who are sick are afraid of doing the wrong thing or making someone mad (don't you wonder why nurses are still considered the most trusted profession? I do!). They are afraid to stick up for themselves and demand what is their right. If the doctor gets pushy (and I don't know that he or she will, but they do sometimes), have the hospice lined up, fire the doctor and get the hospice medical director (which will always be a physician) to make the order to start hospice care. The hospital cannot keep your grandmother against her (your) wishes--that is a crime called "false imprisonment."
If she is in the hospital, I would recommend you get her home NOW and back on proper hospice service. Don't let anyone tell you that it takes time to get things planned, that's a way of extending an unnecessary hospital stay. A hospice will admit any time, any day--including Sunday. If you or Grampa (whoever is her MPOA) insists on her being discharged from hospital, that can happen in as little as a couple hours. This is your gramma's last couple of days--from what you have said before, she does not want to die in hospital, she wants to go at home, surrounded by family and not by people who will force things on her.
Your idea about the adult diapers is excellent. Stock up on those little moist towelettes (some are even flushable, though only one or two at a time). They come in plastic packages and can be microwaved for a few seconds so that they are warm to the touch. Those will bother her little bottom and surrounding skin a lot less than paper. WEAR GLOVES. Elderly and frail hospital patients almost always collect intereting bacteria along the way (because providers do not use proper hand hygiene--and I mean nurses, aides, doctors, you name it). And be very thorough in your cleaning activities. If you are a mother, remember how carefully you cleaned your baby's bottom at a diaper change. Your grandmother cannot do this for herself, you must be very thorough and get every bit of stool off of her (or possibly out of her, if it gets into the folds of her labia and possibly into her urethra or vagina). It sounds a little gross, but she cannot clean herself, and you must be as thorough for her as you would be for yourself or she would be for herself, if she could.
I am kind of going off strong here and maybe seem a little disorganized, but I can tell you are getting a wee bit desperate, and I want to hit the high points. I literally feel the pressure you are under--the sooner I get this to you, the sooner you will feel empowered to do what I know you want to hear it is OK to do.
Here's one last thing--don't ever worry about writing too much or too often or whatever. If I wouldn't be in violation of my contract with this site, I'd make it so you could contact me directly. But we don't have that, so you write when and how you need to, and I'll try to stay aware and keep checking my email for notices that you have written.
Meantime, Rachael, God bless you and your family, may you have peace, and please know how much your grandparents must love you! You are a wonderful grandchild!