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She is on puréed food and barely takes a bite. I know she would not want the feeding tube, DNR in place and living will. Is nursing home required to get my permission? I am POA.
In my experience the family DID have to decide feeding tube or no feeding tube. My grandma had been adamant about no unnatural procedures. I voted no feeding tube and most everyone agreed. She died not long after that.
My heart goes out to you. As POA the facility must report and check in with you even when changing her meds. And yes, this is a difficult decision, yet an important one to honor your LO's wishes. Be at peace.
I wonder if this is covered by a POLST (Physicians Orders of Life Sustaining Treatment)?
Here in BC, Canada, we have a similar document to the POLST, called a MOST (Medical Orders for Scope of Treatment). As mom POA and next of kin, someone mom has indicated a decision-maker who will respect her wishes, I was allowed to sign this document in her stead. It's not something I could just put in place at will - rather, mom has always had certain advanced directives (a DNR), and this is a change those directives, put in place by her doctor as a result of many conversations between me and the medical team looking after her care.
Here, the DNR is part of a MOST - basically resuscitation status is the first level designation. The next levels are critical care interventions and medical treatment interventions. Critical care would include things like tube feeding, ventilators, etc. Like your mom, being kept alive that way was something my mom previously told me she never wanted. So in mom's case, I've had her designated to allow for full medical treatment of illness, but not critical care or resuscitation.
Perhaps someone from the USA could better answer what a POLST covers specifically.
Edit: this is the MOST document in PDF format, for comparison - mom's status is "M3":
It has been shown that tube feeding does not help and may cause complications. You have POA. Let the nursing staff know what your/your mother's wishes are and put it in writing if necessary. I believe they have to consult you before taking such a step.
You don't say how old Mom is. Not eating is a sign the body maybe shutting down. My daughter is an RN working in rehab/nursing facilities. My mother's medical POA said no extreme measures. My daughter said no feeding tubes. Once they are inserted, it takes a court order to remove them. Maybe it's time to have Hospice come in and evaluate Mom.
Mom is 87, lives in SNF in FL. She cries a lot, doesn’t speak much. She is deaf in one ear and hard of hearing in the other ear. I was informed by nurse today that the doctor has ordered a med to increase appetite. Will see where it goes from there. She still recognizes me but does not appear to know what’s going on around her. I am only child adult and appreciate the feedback. As a side note my dad who is 88 with Parkinson’s is also in the same SNF. Today was rough day for all of us.
By tube feeding I assume they mean a Naso gastric tube. It will be unpleasant,make her nose sore and she may not process the feed given. Before each feeding the nurse has to attach a syringe and draw back to check if there is still part of the last feed still in the stomach. That part is not distressing but it tells staff if she is able to processthe feed. If she has residual it is not worth continueing because it will just overtax a body that is trying to shut down. If she has expressed a desire not to have interventions then honor those wishes.
if she has an obstruction in her oesophagus and is in otherwise good health then feeding is a viable option for a patient. I personally have a tube inserted through the wall of my belly into the small intestine. i can still eat a little by mouth and the tube does not cause distress or limit activities. i do have multiple health problems including difficulty swallowing but am reasonably still independent. I still drive and manage finances etc. I do enjoy all the help i get. This is very different from someone in a SNF with advancing dementia..
If I was making the decision for my Mum who passed very many years ago I would not choose the feeding tube option.
However many people are so attached to their loved one that it is difficult to refuse any intervention that might keep a loved one alive even if it causes more distress to the patient.
The doctors normally consult with the family, when the patient is not able to communicate or who is incompetent. There are factors to consider and I would explore them.
There is a lot of material on line and I'd also discuss with the doctor. Is she on Hospice? From my reading, feeding tubes are not what most people think and don't do what most people think either. They can be particularly problematic for dementia patients, because they don't understand what it is and may pull on it, requiring restraints, which is even more challenging. I'd also explore the risks of feeding tubes and if they really extend life.
I'd make sure the facility was informed in writing that all issues would be brought to my attention, so that you can discuss issues like that with the doctor. I'm not sure why the facility thinks it's there decision. Are they are her Guardian or something?
someone asked about Hospice - this is important question I think.
I was approached at the hospital (thru M-Care case management)if I wanted my Dad to start Hospice. I had never been thru these things before, but I said yes. Because I really needed support and guidance.
Which type of POA do you have? If medical POA, they will have to consult you and you will make the final call. If not, things get a little less clear and are dependent on what her advanced directives say, if she has them in place. Tube feeding is not a cure-all and can be uncomfortable for the person receiving them if their body can’t process the feeding formula. For someone with advanced dementia, this could be considered an extreme measure. If your mom declined extreme measures in her AD, then a tube shouldn’t be placed.
We received an excellent article from Hospice when we had them come in for my Dad. It is titled "Compassionate Dehydration at the End of Life" by George Giokas, MD. I've kept the article because it really helped me understand and accept what was happening. An excerpt reads: "Surprisingly, artificial nutrition and hydration has not be documented to prolong life for patients at the end of life. Patients with end stage Alzheimer's Disease frequently lose the ability to swallow near the end of life. Studies of those who have received feeding tubes have not been documented the expected benefits of longer life, improved wound healing, less frequent pneumonias, or greater interaction with institutional activities......Many times family members are dismayed to see that the patient only takes a few bites of their favorite dish. It is another difficult sign that those we love are slipping away. But it is important to remember that for many dying patients, stopping eating is a part of the dying process, not the cause of it."
These are such difficult decisions to make but you know your Mom and what her wishes would be better than anyone in the NH does. They probably need to offer that option but if it isn't something you feel your Mom would want, tell them no. Hugs to you and your Mom.
No one can "make" you have a feeding tube put in place. The POLST, a more detailed form that replaced a DNR specifies tube feeding and gives a variety of options. If the form you have is a POLST it will indicate what to do. If you have the older form you will make a decision as to what your Mom would want.
Stopping eating or eating less and less is a sign the body is shutting down. It, the body, no longer needs the nourishment that the food is providing. Or at least in the quantity that is "normally" provided in a meal. If you continue to provide food one or more things can happen. The food will sit undigested in the gut leading to discomfort and possible infection as the food rots. The food may make its way through the digestive tract but not be able to be eliminated due to the lack of muscle movement resulting in impaction. The body will reject the food and the person will vomit possibly leading to aspiration of some of the food. This may lead to an "aspiration pneumonia" and all the problems that come with pneumonia.
This is just the tip of the iceberg since many Alzheimer / dementia patients will pull out feeding tubes without knowing what they are doing. So the process of replacing them can become a problem. (This happens with both nasal and abdominal) Also bear in mind that any form of anesthesia given to a person with dementia is very difficult and may take them weeks to recover from.
As you can tell I am against feeding tubes in a case like this. So my response is a bit biased. This might be the time to call in Hospice they can help you through this and be another support for you, Mom and the family.
My mother had a feeding tube, placed when there was good hope of recovery from a stroke, for almost four years. My dad’s permission was sought for it. Toward the end of her life, when she no longer tolerated any food as it just “sat” my dad was again approached for permission to stop the feeding. He had POA and the SNF both guided him and respected his wishes. Blessings to you as you walk through this
Lola8888- My mother lost from 135 lbs to 104 lbs in 6 months because she wouldn't eat much and then would only eat very little. She has been diagnosed with moderate Alzheimers. The neurologist I took her to put her on Megace and she gained 8 lbs in one month! She now eats anything that doesn't run from her! She started eating more the next day after she started it!
Years ago, my stepfather's daughter had a feeding tube put in place when her father had a stroke and could not swallow or speak. At the time, my mother was in the hospital dying of metastatic liver disease and was not able to act as his designated POA for health care. She died after a month, he continued on in Medicaid nursing home for 15 months after using up the money from sale of their home and joint savings, leaving nothing for my sister and me. That would have been okay, but his eyes just got wilder and wilder and he became less and less responsive. My husband and I vowed then that we would never want a feeding tube, and when many years later my husband had the same kind of stroke, I made the choice to not put in feeding tube. He went into hospice care and died peacefully after three weeks. It is hard to watch, but he did not seem to be in any pain, and the hospice staff was wonderful and did lots of things I would not have been able to do to keep him comfortable. It was an infinitely better experience than I had with my stepfather.
Ask the nursing home. That should have been your first step when she was admitted. Once you know that, then you can either move her to a new facility or tell your Mom what they are required to do. I've worked in nursing homes and we always asked the family if they wanted extreme measures such as feeding tubes.
What benefit will a tube feeding be to your mother? Will her overall quality of life improve? Tube feeding of elderly only prolongs the natural ending. Many persons with dementia will and do try to remove the tube which is irritating to them. Not a good end of life.
Go with Hospice. I tell you from experience with them with both my father and husband, that it is a wonderful service. They provide you with information, guidance and support making it much easier to handle the medical and emotional aspects of decisions. You will feel less alone in an unfamiliar and sad situation.
My mom is in a SNF and she wasn't eating. This was about 16 months ago. They changed her to pureed food. She did okay for a time but then her eating slowed again. She was given a med that improved her mood and appetite, and she rallied. She's still so thin, doesn't always remember who I am, but she's eating better, sometimes even cleaning her plate, and most times she's happy to see me. But she has a DNR, will not be given a feeding tube or other extra measures. I'm her POA and HP, and thankfully we've discussed these issues in the past. She's 92 and wants to die. And it's going to kill me when she does.
I was DPOA for my sister-in-law. She was in very poor health and demented (had always been mentally challenged) enough to see dead dogs under her bed, and 'Texas' sized bugs that the aides had been spraying using room freshener as bug spray to calm her. Diabetic, morbidly obese, double lower leg amputee with worsening PAD, and had been having renal failure, seizures and strokes. Apparently someone at the SNCF asked her about her last wishes, and she wanted all the bells and whistles... I think she thought it would be like a day at the spa! Her doctor also agreed that she seemed competent. (HA! I have never used or recommended her ever since.) Anyway, her aides and nurses were shocked by this and I was also once informed that I needed to activate the DPOA! That was not a problem though once I had that done. A social worker and doctor both were needed to declare her as incompetent. I also had hospice brought in when there was no agreement between staff as to how to care for her. Made a huge difference! I'm in Michigan so things could be different for other states, but this is why it's a good idea to plan and research what you are dealing with.
"Your (POA) or agent can only make these decisions if you cannot do so yourself, and your agent must follow your wishes when making these decisions."
Lola
What does her advance directive state? Does she state she does NOT want a feeding tube?
If she states no tube, then do not use the tube.
As others have mentioned, and because she is still eating and swallowing small amounts of pureed food, there is a drug that can increase appetite. That may help.
Lastly, has she been evaluated for kidney or bladder infections or an intestinal blockage?
Those are both fixable medical issues that can effect appetite.
I knew I would never place feeding tube in mom with alzheimers. I took care of her alone at home for 4-5 years. They cannot place feeding tube without your consent, but I would make sure they know. Aldo I would ask about hospice coming in. It may not be time yet,but they can come into nursing home and I would strongly advise this to help support you in your decisions and also comfort for your mom. I pureed my moms food myself because it tasted much better. I would put butter, heavy cream etc in mashed potatoes and salt snd pepper. I also gave her 3 ensure a day--- butter pecan was favorite. Taste the food yourself and see what it tastes like. I had to tell the daycare this--- if you think it tastes terrible , why would you think she would like it? Best of luck
I would talk to the nursing home about calling in Hospice. I just went thru this with my mother and they were wonderful. Some nursing homes insist you use a specific Hospice.
With POA, you have to make the decision unless she has a living will. My grandma has a living will that she wrote up in 74 and again in 98 so we will follow that which means no feeding tube, no CPR and no machines. I will respect that as honestly at this point I would make the same call for her. So you will have to make the decision for them and say no feeding tubes. They cannot legally do it unless you say to. Hold your ground and stand firm if that is your wishes not to have her have a feeding tube. And others are right, if she is not eating, it's time for Hospice to be called as they can assist with making sure your wishes are upheld.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
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You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
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I assume your mother is in AL or some type of facility care?
Did anyone state that intubation would also be done if a tube is inserted?
And yes, this is a difficult decision, yet an important one to honor your LO's wishes.
Be at peace.
Here in BC, Canada, we have a similar document to the POLST, called a MOST (Medical Orders for Scope of Treatment). As mom POA and next of kin, someone mom has indicated a decision-maker who will respect her wishes, I was allowed to sign this document in her stead. It's not something I could just put in place at will - rather, mom has always had certain advanced directives (a DNR), and this is a change those directives, put in place by her doctor as a result of many conversations between me and the medical team looking after her care.
Here, the DNR is part of a MOST - basically resuscitation status is the first level designation. The next levels are critical care interventions and medical treatment interventions. Critical care would include things like tube feeding, ventilators, etc. Like your mom, being kept alive that way was something my mom previously told me she never wanted. So in mom's case, I've had her designated to allow for full medical treatment of illness, but not critical care or resuscitation.
Perhaps someone from the USA could better answer what a POLST covers specifically.
Edit: this is the MOST document in PDF format, for comparison - mom's status is "M3":
https://www.interiorhealth.ca/AboutUs/Policies/Documents/Medical%20Orders%20for%20Scope%20of%20Treatment%20(MOST)%20and%20Advance%20Care%20Planning%20(ACP).pdf
If she has residual it is not worth continueing because it will just overtax a body that is trying to shut down.
If she has expressed a desire not to have interventions then honor those wishes.
if she has an obstruction in her oesophagus and is in otherwise good health then feeding is a viable option for a patient.
I personally have a tube inserted through the wall of my belly into the small intestine.
i can still eat a little by mouth and the tube does not cause distress or limit activities.
i do have multiple health problems including difficulty swallowing but am reasonably still independent. I still drive and manage finances etc. I do enjoy all the help i get.
This is very different from someone in a SNF with advancing dementia..
If I was making the decision for my Mum who passed very many years ago I would not choose the feeding tube option.
However many people are so attached to their loved one that it is difficult to refuse any intervention that might keep a loved one alive even if it causes more distress to the patient.
There is a lot of material on line and I'd also discuss with the doctor. Is she on Hospice? From my reading, feeding tubes are not what most people think and don't do what most people think either. They can be particularly problematic for dementia patients, because they don't understand what it is and may pull on it, requiring restraints, which is even more challenging. I'd also explore the risks of feeding tubes and if they really extend life.
I'd make sure the facility was informed in writing that all issues would be brought to my attention, so that you can discuss issues like that with the doctor. I'm not sure why the facility thinks it's there decision. Are they are her Guardian or something?
I was approached at the hospital (thru M-Care case management)if I wanted my Dad to start Hospice. I had never been thru these things before, but I said yes. Because I really needed support and guidance.
These are such difficult decisions to make but you know your Mom and what her wishes would be better than anyone in the NH does. They probably need to offer that option but if it isn't something you feel your Mom would want, tell them no. Hugs to you and your Mom.
The POLST, a more detailed form that replaced a DNR specifies tube feeding and gives a variety of options. If the form you have is a POLST it will indicate what to do. If you have the older form you will make a decision as to what your Mom would want.
Stopping eating or eating less and less is a sign the body is shutting down. It, the body, no longer needs the nourishment that the food is providing. Or at least in the quantity that is "normally" provided in a meal.
If you continue to provide food one or more things can happen.
The food will sit undigested in the gut leading to discomfort and possible infection as the food rots.
The food may make its way through the digestive tract but not be able to be eliminated due to the lack of muscle movement resulting in impaction.
The body will reject the food and the person will vomit possibly leading to aspiration of some of the food. This may lead to an "aspiration pneumonia" and all the problems that come with pneumonia.
This is just the tip of the iceberg since many Alzheimer / dementia patients will pull out feeding tubes without knowing what they are doing. So the process of replacing them can become a problem. (This happens with both nasal and abdominal)
Also bear in mind that any form of anesthesia given to a person with dementia is very difficult and may take them weeks to recover from.
As you can tell I am against feeding tubes in a case like this. So my response is a bit biased.
This might be the time to call in Hospice they can help you through this and be another support for you, Mom and the family.
Apparently someone at the SNCF asked her about her last wishes, and she wanted all the bells and whistles... I think she thought it would be like a day at the spa! Her doctor also agreed that she seemed competent. (HA! I have never used or recommended her ever since.) Anyway, her aides and nurses were shocked by this and I was also once informed that I needed to activate the DPOA! That was not a problem though once I had that done. A social worker and doctor both were needed to declare her as incompetent. I also had hospice brought in when there was no agreement between staff as to how to care for her. Made a huge difference!
I'm in Michigan so things could be different for other states, but this is why it's a good idea to plan and research what you are dealing with.
If you have medical POA, they have to abide by your wishes, but only if she is not competent to do so.
Here is a link with a sentence from the link:
lawhelp.org/dc/resource/frequently-asked-questions-about-durable-powe
"Your (POA) or agent can only make these decisions if you cannot do so yourself, and your agent must follow your wishes when making these decisions."
Lola
What does her advance directive state? Does she state she does NOT want a feeding tube?
If she states no tube, then do not use the tube.
As others have mentioned, and because she is still eating and swallowing small amounts of pureed food, there is a drug that can increase appetite. That may help.
Lastly, has she been evaluated for kidney or bladder infections or an intestinal blockage?
Those are both fixable medical issues that can effect appetite.