Mom has Alzheimer’s and no desire to eat. Nurse says next step is tube feeding. Can they do this?
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.
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.
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.
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.
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?
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.
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.
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.
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.
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":
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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.
And yes, this is a difficult decision, yet an important one to honor your LO's wishes.
Be at peace.
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.
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
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