Dear Barbara, I read your blog about bowels and end of life issues. My father passed nine years ago, and I continue to be troubled by an episode with hospice care. I’d like to know if it was a reasonable approach, just for my own well being.
My dad had leukemia and was not eating much if anything in his final days. He was not complaining of any discomfort in terms of constipation or any concern about his bowels. He was receiving hospice care in his home. The hospice nurse forced him to get up from his bed, with help from my brother, and go to the bathroom where she evacuated his bowels (I don’t know what method was used). This upset my dad and brother quite a bit. The nurse insisted and said my dad would be more comfortable. When I think of my dad’s passing this is the one memory that keeps haunting me. Should we have been stronger advocates for my dad and gone with his wishes? Is this a standard procedure in Hospice care?
I am sharing this letter and my response because this family is not the only family that has carried memories, sometimes for years, of situations that occurred as their loved one was being cared for. As health care professionals it is a huge part of our job to educate, to explain what we are doing and why we are doing it. Our educating needs to be done with awareness and compassion. Families and patient’s are like deer in headlights when it comes to what is happening to them. They don’t ask questions, don’t advocate for themselves, and then when the situation is over carry the images and thoughts with them forever. Here is an edited version of my response to this letter:
I received your question about hospice's approach to your father and his bowels. I don't have enough information about your father's specific condition, at the moment the nurse got him out of bed, so I will just make some general statements.
Even when a person is eating very small amounts, or barely at all, the body makes poop, so up to a few days before death a person needs to have bowel movements. If they don't go on their own, then we need to medically help them. If they are taking pain medications then moving their bowels on their own becomes an even bigger challenge.
How we "help" them can be in several ways: medications like stool softeners or gentle laxatives are generally my first choice. An enema is not usually one of my choices (for best results and less mess it needs to be done with the patient sitting on the toilet or commode. Most of my patient's are generally too close to death to sit outside of the bed) but it is a method. If the stool becomes hardened by being in the body for a long time then it has to be removed digitally (inserting a gloved finger in the rectum and pulling the stool out). We want to avoid having to do that because it is so uncomfortable and embarrassing for the patient.
Here are my thoughts on what occurred with your father. First, the nurse did not explain to you what and why she was doing what she was doing. Education is a big part of any hospice nurse's job and I find that to be missing in this situation. It would have avoided all this concern if the nurse had explained what she was going to do and why. If she had said "I'm so sorry to have to put you through this but it is really the best way to avoid bigger problems. I am going to______( and she explains what she is going to do). After this we will make sure you have a stool softener".
The fact that your father could get out of bed tells me he was not days or maybe even weeks from death so yes, he needed to have a bowel movement so bigger problems did not develop. I'm guessing she put him on the toilet and gave him a enema (inserted water into his rectum which basically flushes out the stool). She did it with him sitting on the toilet so there was no mess just the indignity of the whole situation.
This was an unpleasant situation. I wish it had not happened for you, your brother, and your father. Nine years is a long time to carry this unpleasant memory. In the scheme of life is was an embarrassing moment but it is time to put it to rest. Nothing really bad happened. It was embarrassing, the nurse was thoughtless about the teaching and emotions involved. Hopefully my explanation of what may have occurred will help you put this to rest. My hope for you is you will remember the good times, the good exchanges, you had with your father. Those are the memories that are important to us as we learn to live with our loss and grief.
Something More About: An Unpleasant Memory of Dad's Care
I encourage all death doulas, palliative care nurses, hospice nurses and hospice volunteers to watch THIS IS HOW PEOPLE DIE. It is a three part educational DVD on caring for people at end of life.
7 comments
Beverly
My dad died at home. My mother, a nurse, said he asked to be taken to the bathroom where he had a large BM. He died within a couple of hours. She said he didn’t want to leave that mess for his family. He wanted to die with dignity.
My dad died at home. My mother, a nurse, said he asked to be taken to the bathroom where he had a large BM. He died within a couple of hours. She said he didn’t want to leave that mess for his family. He wanted to die with dignity.
Elizabeth Bateman
My mom was very uncomfortable in the last few days because of constipation. Her caregivers didn’t want to give her stool softeners because then she made a mess. When I got there, I gave her something to help her and it took a lot of her energy to clear her bowels of stool. It was her last major effort at anything before she died. I was upset that the carers had been so selfish, and I do think that this is an important, albeit an uncomfortable, topic to discuss. Thank you for raising it.
My mom was very uncomfortable in the last few days because of constipation. Her caregivers didn’t want to give her stool softeners because then she made a mess. When I got there, I gave her something to help her and it took a lot of her energy to clear her bowels of stool. It was her last major effort at anything before she died. I was upset that the carers had been so selfish, and I do think that this is an important, albeit an uncomfortable, topic to discuss. Thank you for raising it.
Patricia
Hello Barbara, I have many of your literature and keep reading and rereading every word trying to educate my self on my husbands journey with cholangio carcinoma which is 7 months into diagnosis.Every word appears to be on point ,he is not accepting the idea of hospice yet and I can’t seem to take that dignity away from him.he is still taking care of his hygiene needs and his medication but certainly has no quality of life,he also has asbestosis which isn’t pleasant at all! I look forward to future writings from you.thank you
Hello Barbara, I have many of your literature and keep reading and rereading every word trying to educate my self on my husbands journey with cholangio carcinoma which is 7 months into diagnosis.Every word appears to be on point ,he is not accepting the idea of hospice yet and I can’t seem to take that dignity away from him.he is still taking care of his hygiene needs and his medication but certainly has no quality of life,he also has asbestosis which isn’t pleasant at all! I look forward to future writings from you.thank you
Barbara
Hi Trace, your comments about the blog article and bowel movements: a lot of people as they are dying will have a bowel movement and also will urinate. For me that shows that the body indeed makes waste even though a person is not eating. We just don’t want all of that to build up in the intestine and lower bowel causing discomfort. The longer stool sits in the rectum area the harder it gets adding additional discomfort. It just seems so simple to give a laxative or stool softer on a regular basis as long as a person can swallow. Once they can’t swallow death is generally so close it is okay (unless the person has dementia and that is another whole blog.) Thank you for asking.
Blessings! Barbara
Hi Trace, your comments about the blog article and bowel movements: a lot of people as they are dying will have a bowel movement and also will urinate. For me that shows that the body indeed makes waste even though a person is not eating. We just don’t want all of that to build up in the intestine and lower bowel causing discomfort. The longer stool sits in the rectum area the harder it gets adding additional discomfort. It just seems so simple to give a laxative or stool softer on a regular basis as long as a person can swallow. Once they can’t swallow death is generally so close it is okay (unless the person has dementia and that is another whole blog.) Thank you for asking.
Blessings! Barbara
Terry wellner
My mother passed away last month. She was 1 month shy of 107. I am a retired ICU nurse, I was ignorant to the phases of death, hospice brought me your book “Gone from sight”. Most everything was explained, I wish I’d had had it 2 months previously. I could’ve helped her so much better. I’ve never known grief as this. All nurses need to understand death , my BS degree failed me here. I hope that has changed in nursing institutions. Your books should be required reading in school and encourage as CEU’s.
My mother passed away last month. She was 1 month shy of 107. I am a retired ICU nurse, I was ignorant to the phases of death, hospice brought me your book “Gone from sight”. Most everything was explained, I wish I’d had had it 2 months previously. I could’ve helped her so much better. I’ve never known grief as this. All nurses need to understand death , my BS degree failed me here. I hope that has changed in nursing institutions. Your books should be required reading in school and encourage as CEU’s.
Sue Blosser
What a nice way of explaining the process. As a palliative NP, I see just the opposite, no one asks a patient about constipation. I had a patient in for abdominal pain and it turned out I was the first to ask if he was constipated. He had not gone in 9 days, which contributed to his pain. We were giving him plenty of pain medication, which contributed to this situation. I started out with stool softeners and moved up to suppositories and even mag citrate and then an enema. The primary was fine with discharging him without a bowel movement. The patient was really concerned about going home without having one and willing to try anything and everything. I have seen so many patients having cramping and being impacted, which is very uncomfortable.
It sounded like her dad may have been more comfortable getting a suppository in the bed but many parents are embarrassed about having a bowel movement in front of their children, even if they’re grown. I’m sorry the nurse didn’t explain the process well and know that the patient has a right to refuse, even if it’s not the best decision.
What a nice way of explaining the process. As a palliative NP, I see just the opposite, no one asks a patient about constipation. I had a patient in for abdominal pain and it turned out I was the first to ask if he was constipated. He had not gone in 9 days, which contributed to his pain. We were giving him plenty of pain medication, which contributed to this situation. I started out with stool softeners and moved up to suppositories and even mag citrate and then an enema. The primary was fine with discharging him without a bowel movement. The patient was really concerned about going home without having one and willing to try anything and everything. I have seen so many patients having cramping and being impacted, which is very uncomfortable.
It sounded like her dad may have been more comfortable getting a suppository in the bed but many parents are embarrassed about having a bowel movement in front of their children, even if they’re grown. I’m sorry the nurse didn’t explain the process well and know that the patient has a right to refuse, even if it’s not the best decision.
Trace
Hello Barbara
I am hoping you will get more specific as to why a person must be made to have a bowel movement when they are nearing death. I was the carer of my father as he died at home. Within 2 hours of his death he had a huge bowel evacuation. We dealt with it (cleaning my father and the room). My father in law’s body did the same thing.
I suspect that the more specific reason is to avoid having feces and blood on the bed, floors, on the patient and on carers. A work health safety issue.
As a reader of your response to the writer I would say that your reason why wasn’t much different to what they were told by the hospice nurse.
Hello Barbara
I am hoping you will get more specific as to why a person must be made to have a bowel movement when they are nearing death. I was the carer of my father as he died at home. Within 2 hours of his death he had a huge bowel evacuation. We dealt with it (cleaning my father and the room). My father in law’s body did the same thing.
I suspect that the more specific reason is to avoid having feces and blood on the bed, floors, on the patient and on carers. A work health safety issue.
As a reader of your response to the writer I would say that your reason why wasn’t much different to what they were told by the hospice nurse.