Speech therapist won't allow regular food. What are our rights?

I do have P O A

Luisa,  the speech therapist is performing her medical duty, which is to prescribe the appropriate restricted diet for someone who apparently has dysphagia.   If she switched (or upgraded) to mechanical soft food, it suggests to me that he did show improvements, and was able to manage that level of food.

He might hate it, but you both need to understand that not only is she doing what's best for him, that she as a medical professional understands dysphagia and the results, and that if he does eat "regular food", he runs the risk of aspiration pneumonia, or choking on his food.    

In a higher level of dysphagia (pureed foods only), not only are aspiration and choking more dangerous, but cyanosis (face turns blue) can occur.   That's a  life threatening emergency.   If you ever see it, it'll be very difficult for you to view and to remain calm.     

You do have the right to refuse the proper treatment, as does your father, but you have to accept that you're ignoring proper, legitimate medical advice and putting your father at the risk of choking, aspirating, and being unable to breath.

If you've never seen how horrifying this is, prepare yourself.    It's frightening.    And you and your father would have to accept the blame and responsibility for this decision.

What I would suggest is that instead of blaming the speech therapist, that you (a)  read up on dysphagia so you understand it, then (b) apologize to the therapist and ask her to guide you in preparing as best you can food that is appropriate for his level of compromised ability to eat.   

She's probably not particularly pleasant with you b/c you don't understand the issues, and your position endangers your father's health and life.  

As one speech pathologist explained to us:   sure, you can eat what you want, and recognize that it may kill you.  And that's not an understatement.

If the POA your father executed is for legal and financial, it's not relevant to health care decisions.    You would need a medical POA or Living Will, or other document that gives you authority to make decisions on medical issues.  And you would be taking responsibility for NOT ensuring that he gets proper medical care.   

My father didn't like pureed food either. I cooked food at home to a mush state but didn't actually puree it and Dad would eat it. Dad always liked a lot of soft foods like mashed potatoes, soups, ice cream, applesauce, puddings, cornbread soaked in milk. I cooked meats in a savory broth for hours until it was so tender it separated easily, the cut in into 1/4" bites and kept it very moist or used in soups. Extra milk in the mashed potatoes and puddings, melt the ice cream and stir it up until it was soft serve consistency, etc. Chicken noodle soup and cream of potato and tomato soups worked well too. I was very lucky the MC (which had a 24/7 kitchen access policy) was willing to heat and serve the food I prepared at home. My brother was able to be there for most meals to sit with Dad and help if needed and the staff was able to cover the occasional meal when a family member couldn't get there.

You (as POA) have a legal right to make a choice against medical advice and refuse treatment, including pureed foods; however, please read GardenArtist's post carefully and make sure you understand all the risks. My father had vascular dementia and was "living on borrowed time" according to his heart doctor when I made the decision to embrace a soft diet instead of the recommended pureed foods. I choose Dad's comfort over the risks of an earlier death when death was coming in weeks or months. I even quartered soft center chocolates for Dad. Are you prepared to see your father choke and die or develop pneumonia and die as his lungs fill with fluid and he cannot breathe?

GardenArtist said it best and I agree with her. Your speech therapist is advocating for her client and she knows better than we would. Swallowing precautions are taken very seriously for a reason. I know smushed up meatloaf is not half as appetizing as a slice of steak but a mouthful of steak can kill a person on swallowing precautions.

It's also risky to bring him treats from home that haven't been OK'd by the speech therapist.

If he were on respiratory therapy would you want him to go against the therapist's orders?

I clashed with the dietitian and kitchen administrator as well and I sympathize with how infuriating it can be to have your concerns ignored and be treated like an ignorant child.

My mom was on a pureed diet with honey thickened fluids and that was indeed appropriate most of the time, but she was also perfectly capable of eating a cracker with her soup or enjoying a potato chip or two, there were also days when she choked on her honey thickened beverages and I got push back when I asked for extra thickener. The core problem as I saw it is that once a care plan is put in place there is no room for flexibility - it is an unfortunate reality of institutional life that there is just not enough time or manpower to constantly adjust the meal plan multiple times a day for multiple residents, so erring on the side of caution is always the default. As long as I was there with my mom I was allowed (reluctantly) to over ride the diet plan as I saw fit, but I had to bow to that reality when I was not.

Do continue to bring your father treats he can enjoy while you supervise him but allow the facility to have it's way when you aren't able to, during mom's time in NH I watched many people struggle and fail to eat the normal diets that their families insisted on. And consider this - sometimes it's not so much the texture but the whole menu that is the major stumbling block, and there's no getting around that.

I'm popping back to add a comment about the weight loss - what are they doing to address that? Have they included high calorie supplements in his diet plan?

I’m not sure you are ready to hear the advice these wonderful folks are giving... you may be like my mother and have to learn the difficult way.. she kept bringing him food that he liked, and he would stuff it down like a ravenous wolf... i kept telling her to cut it up into very small bites but she would not. Finally a kind nurse sat us down to tell us WHY his food was mashed...WHY he was out in the dining area at meal time... and that he was a severe choking risk but could not understand (dementia) that it was not ok to take huge bites. They watch him like a hawk. I asked my mom if she would like to have him choking to death in front of her...she sort of gets it now...I convinced her to (and the nurse did too) to leave the food alone and we now take him big ice cream shakes that he can easily swallow and helps a bit with his weight. Listen to the professionals..and the wonderful folks on this board who have been through this type of thing...

A 'mechanical diet' is nothing more than food that is chopped in order to prevent choking or aspiration pneumonia. Asking the speech therapist the same question repeatedly and telling her your loved one doesn't want 'her mechanical food' sounds like it could be interpreted as confrontational, when all she's doing is keeping his health needs as a top priority, which is her job. Perhaps if you treated her with kindness and reason she'd be more prone to speaking to you in the same manner.

I guess you have the 'right' to feed your loved one whatever you'd like, but if something terrible happens, you might regret it. Being ill is not easy and eating foods that we don't often like are part of a painful and frustrating recovery process that can be even more difficult.

Best of luck!

My mother had a swallow evaluation about a month age I was able to stay with her for the test. I was able to see on the screen how she was aspirating some of different textures of food into her lungs.She has a swallowing delay and is now on pureed foods and honey consistency liquids. At first she did not like the new diet, but with much effort, and making meals she likes, she is eating better and actually is enjoying most meals I prepare. It is in the best interest to follow the professional advice from the speech therapist. You do not want him to aspirate or choke, and this will definitely happen if you do not follow the advice. I totally understand your situation, but I am in complete agreement with the therapist. He was advanced from pureed to mechanical food, I would be happy with that outcome right now. Do what is best for him! The best to you both.

Luisa doesn't list dementia as one of her father's health problems so IMO he should be allowed to voice his own preferences and take the associated risks. While "something terrible" might happen if a person with dysphagia is allowed to eat foods not on their approved plan I think that has to be balanced with allowing them the best quality of life choices you can. For many of us food is much more than fuel for our bodies and the prospect of giving up every possibility of enjoying even a morsel of our favourites for the rest of our lives is intolerable. It shouldn't have to be all or nothing and a little bit of flexibility can make the rest more bearable.

I thank you all from the bottom of my hart for all your advice. My father was a strong, well minded man but when he started with his depression and hallucination and seeing spiritual visions ,living alone was not safe for him anymore I did try to take care of him for as long as I can but it became to much so now at the Nursing home, he was fine for the first year but then he had a terrible fall, this past March, I had sign a Do no hesitate way before his fall but they did revived him ( ambulance ) at the NH and he was in ICU . when brought back to the NH, he since been on purée food , bed ridden, got a few infections, was in isolation got an ammonia. he is now on mechanical food and is still not able to walk or get out of bed anymore but is finally sitting up in a wheelchair . I am his 58 yr old daughter with signed power of attorney of all his medical decisions. I ask to be there when they did the throat test , they said ok but they didn’t call me and did it with out me . I feel they do what ever they want and now they keep him drugged up all day because he keeps trying to get up and they don’t want to be bother by him.I just feel so angry seeing him like this and thinking how active he was before all this happened I feel it’s all my fault , but I do thank you all for you advice

Most facilities have a waiver that can be signed, essentially saying that you understand the risks and will not hold the facility responsible for a negative outcome (e.g. - choking). I would ask the DON about it.

Luisa, I've been thinking about your situation.   We were very frank about the dysphagia situation, but harking back to your original post and the concern and love you seemed to express for your father, I felt that I might have neglected to address that aspect of your post in favor of supporting the conclusions of the speech therapist.

So I tried to think about ways you could cope with and adapt to the situation,  but also offer support to you.    Others have shared what they've done.   Despite the unattractiveness of mushy mood, there are chef style ways to make it more appealing.   And the appearance of food can lessen the repugnance of eating what could be called mush.

1.   Check out some of these websites with basic information on the levels of dysphagia, so that you can be prepared if he needs more selective foods.   But there are also suggestions on appealing dysphagia food. 

https://www.fairview.org/patient-education/90424   (basic levels of diets)

https://www.google.com/search?q=dysphagia,+making+food+appealing&tbm=isch&source=univ&sa=X&ved=2ahUKEwipz47TpobmAhVWsZ4KHdBgACoQsAR6BAgIEAE&biw=1280&bih=537#spf=1574717521492   (I think this is one of the best collections of hits). 

Look at the third photo in the second row in the URL above and see how the presentation makes the food more appealing.   These foods don't appear to all be pureed, but the use of kitchen tools to create mounds and swirls does make the food appear to be more palatable.   This is one way to "decorate"  and shape mushy foods.  

E.g., for something like jello, I would use cookie cutters to cut out pleasant shapes, perhaps Christmas symbols such as wreaths, a santa, reindeer, etc.  

I think if the food looked pleasant, it might be more edible and your father might not resist it so much.

There are more hits, but I think the following ones might not be as helpful.

https://dinerwearadultbibs.com/making-dysphagia-food-appealing/

https://kitchenheat.ca/dressing-up-dysphagia-diets/   (some type of machine makes "squiggles" in food, and to me makes it a bit more interesting than a pile of mush).

https://www.npr.org/sections/thesalt/2018/05/15/609389349/gels-foams-and-purees-cookbooks-serve-up-recipes-for-those-who-struggle-to-swall  (interesting adaptations and "presentation" of food).


The fact that your father is sitting up in a wheelchair is progress!!  Cherish that, and work towards the next step, with the staff.

I think it would help to change the dynamics of the staff relationship.   While I don't know the situation, what I would do is ask for a meeting of the DON, activities director, chef (or head cook), and others involved with his care.

Turn them to your side:   explain your concern about his outlook, WITHOUT PLACING ANY BLAME, and ask how the staff and you can work together for his benefit.    This is appropriate to eliminate any hostility that's arisen in the past.

Ask for their suggestions, but offer your own, and in fact do that so that they can feel as if they're providing valuable and legitimate answers (which hopefully they will do.)    If he doesn't go to activities, take him, stay with him and help him if necessary.  (Hopefully they'll be interesting activities and not just bingo.)   But get him out of his room; it's depressing to be in the same room for days.

Take him on a wheelchair tour of the facility.   One of the ones I found for my father had a lovely lounge with a massive fireplace; the décor was that of a lodge in the woods someplace.   It was soothing, and we both enjoyed just sitting there.

If he reads, take him to the facility library and help him select books to read.   In other words, whatever his interests are, try to find a way to pursue them there, or bring activities to him.    Redirect his thoughts toward concentration and away from his unhappy state.

(I'm continuing this separately as I'm running out of space.)

2.   Support for your father, and interaction with the facility staff. 

The fact that your father is sitting up in a wheelchair is PROGRESS!! Cherish that, and work towards the next step, with the staff.

I think it would help to change the dynamics of the staff relationship.  While I don't know the situation, what I would do is ask for a meeting of the DON (Director of Nursing), activities director, chef (or head cook), and others involved with his care.

Turn them to your side:  explain your concern about his outlook, WITHOUT PLACING ANY BLAME, and ask how the staff and you can work together for his benefit.   This is appropriate to eliminate any hostility that's arisen in the past.

If you find that repugnant, think of it as a conquest, as a problem solving method that would hopefully lead to a better situation for your father, and make it a high priority goal.

Ask for their suggestions, but offer your own, and in fact do that so that they can feel as if they're providing valuable and legitimate answers (which hopefully they will do.)   If he doesn't go to activities, take him, stay with him and help him if necessary. (Hopefully they'll be interesting activities and not just bingo.)  But get him out of his room; it's depressing to be in the same room for days.

And take him to any concerts or music presentations.  These kinds of activities, plus interaction with others, can be and are considered therapeutic in some circles.

What else did he enjoy before becoming ill?   Let us know, please.  There are a lot of creative people here who can offer adaptations on his interests.

Take him on a wheelchair tour of the facility.  One of the ones I found for my father had a lovely lounge with a massive fireplace; the décor was that of a lodge in the woods someplace.  It was soothing, and we both enjoyed just sitting there, relaxing. 

If he reads, take him to the facility library and help him select books to read.  

In other words, whatever his interests are, try to find a way to pursue them there, or bring activities to him.   Redirect his thoughts toward concentration and away from his unhappy state.

I doubt if the staff would be frank and blunt and tell you they can't or won't work with you, but if they do, you might consider just expressing your disappointment in the management, and hope that they reconsider.   

Your goal is to improve life and  conditions for your father, and if it means compromising your attitude and applauding those who can create this change, do it.    You'll feel better about yourself, and will have the knowledge that you've overcome such obstacles by not only taking matters into your own hands, but by bringing them on board to help you in your goals... and using tact to do it.

That should make anyone feel great!

Then, if they won't cooperate, in the meantime, begin looking at other facilities in the area.  Check out the nonprofits; I've found them to be of higher quality and more professional as well as sympathetic to patients.


Good luck, but first, please tell us what your father's interests are so the direction of this thread can be directed toward activities and away from dysphagia limitations.

Another thought, as to "keeping him drugged up all day."  

Ask to meet with the DON and review his medication lists, and ask what the purpose of each med is.   Then research them, and if necessary, ask for another meeting and find out why they're medicating him with drugs that you find questionable, or don't understand.

The online PDR is a good source for medication information.  It used to be the Bible for us in med malpractice cases.    

If you're questioned by staff, make it clear, pleasantly, that you want to be a partner in his care and feel it's important for you to know why he's getting the meds they've decided on.    

I've had to do this on literally every rehab placement, and often advised that my father did NOT need a specific med.   It was pathetic how the records became so botched up when my father was transferred from the hospital.

Get a 2nd opinion.

Get a PERMISSION NOTE FROM THE DOCTOR.

His doctor needs to be involved. Get a second opinion.

The speech therapist is one of a team of different people who should be looking at your Dad in a holistic way. It seems as though she isn't doing this because the issue of losing weight should be picked up by a different nurse - the nutrition one. I understand why the speech therapist, who isn't anything to do with speech really but just concerned with swallowing, has placed your Dad on pureed food - she must have been worried about regurgitation and food passing into his lungs and causing infection and choking, but this was a temporary measure as you say and because it's gone on for so long, your Dad is not losing weight. There is a measure you should take, and that is of his upper arm, half way between his armpit and elbow - measure the circumference of his arm - and ask the nutritionist what the last measure was - show that you know what you're talking about and then somebody will step in and if they don't have a last measure then you can raise the roof because no person should be placed on pureed food without recording this basic information. There's a dilemma here - will your Dad choke, or will he waste away? It's about quality of life and as his daughter you should be able to decide this together with him.

As a recently retired Dietician I understand your concern. I worked 27 years in a nursing home and assisted living facility. Providing regular consistency food may cause him to aspirate food into his lungs, cause pneumonia and he may die. This can be a silent killer. It also may be painful. Talking to his MD and signing a release form stating you realize the potential dangers and risk is what we did with families or elderly patients that refused mechanically altered foods. Speak directly to the doctor or call your State Dept that regulates homes.

As a Registered Nurse, it is not about "your rights", it is about what he is able to swallow correctly. Has a new Swallow Study been done that shows he cannot properly swallow regular food? If he has not had a recent study, he needs one, maybe even an imaged study, not just a bedside, sit and evaluate study.

If someone cannot swallow properly, there is an increased risk of pneumonia. Swallowed food needs to channel to the stomach, not the lungs. When someone cannot chew or swallow properly, the food or liquid may go into the lungs rather than the stomach.

Talk to the therapist and ask why he / she says no and go from there. I would imagine they have the best interests of the patient at heart. If not, talk to the nurse, nurse manager, and find out what you need to know.

My Mom has been on pureed foods for 5 years now, at first she hated them but now she is used to them. The one thing that has saved her by getting enough calories in are special shakes by Hormel Health Labs, Either the Mighty Shake (500 calories 20 gm protein, chocolate or vanilla ) or Vital Cuisine here is a link .. If he is at home they will ship to him, if he is at a nursing home you can demand that they bring them in... https://www.hormelhealthlabs.com/products/type/nutrition-shakes/

Let me know how you make out ... Bob ( Balanced Way Nutrition)

No reason for someone to talk to you like that. Insist that you get to talk to the doctor. It should ultimately be the patient or family’s decision. You need to know possibly risks vs. benefits. It sounds like you are a good advocate and you know the patient better then anyone else. Stay strong.

The therapist cannot dictate care. Speak to your physician and have him/her write an order which provides for solid food for your family member. The speech therapist may be afraid of her liabiliiy if your faily member should aspirate or choke. Some experts in the care of the elderly now are beginning to say that with the right care, a person may be able to continue on solid foods, as least sometimes and so long as they are cut into bite-size and are tender. Go for it and good luck.

What is mechanical food?

Does he have some esophageal issues that concern her? That is a matter for a physician, imo.

She seems to have NO people skills, but she might be right. Refer the matter to his physician.

The physician may agree with her, but at least she will (hopefully) explain why pureed food might be necessary. Tell her how you’ve seen him eat at home, and see what she makes of that.

People are afraid of lawsuits but the therapist has no right to speak to you like that. Ugh. Wounded healers.

I don't know all the specifics here. For example, is your father competent to make sound decisions? If so, he is well within his rights to go against the SLP's advice. He would need to sign a form that states that he understands the risk of choking and other possible medical problems that may result from changing to a regular diet, and that releases the SLP, MD, facility and any facility employees from liability should he choke and die or develop medical complications such as aspiration pneumonia.

If he is not of sound mind and you or a family member have medical POA, then you can make the decision for him. Again, signing a waiver.

But the first thing you may want to do is talk with the DON regarding your concerns about your father's weight. He can't improve physically if he's not well nourished.

Then ask for a video swallow study if one hasn't been done recently. This way you'll have objective results to be able to make an informed decision about what food texture and liquid thickness is safest for your father right now.

Finally, ask for a different speech therapist if there is more that one on staff at the facility. There's no need to have to tolerate her attitude. If they can't change therapists, then tell her directly that you don't like her attitude and that it needs to change.

The fact that he is eating when you are there is one thing but if he is left on his own at a dining table there is the possibility that he may aspirate.
You could ask for another Therapist and another evaluation.
The fact that it seems she is not communicating the why's to you would be enough to request another.
I have to say though she may be erring on the side of caution it is very easy for someone to aspirate and it can happen so fast. And this could happen with any food type at any time.
Looking at your profile there does not seem like there would be anything that would indicate he needs mechanical or pureed food. Did something occur that started this?

Unfortunately, your insistence on "regular" food is very dangerous for him. After my husband had a stroke (coupled with radiation previously), his swallowing was very weak and he continuously had aspiration pneumonia. He ultimately passed away from the effects of repeated bouts of pneumonia. Pneumonia can ultimately damage your lungs so much it's difficult to recover. You should work with the dietician for high-calorie foods and supplements (there are wonderful chocolate or vanilla shakes out there), or you should learn to process the food to the standards that he can eat if you insist on bringing it in. After seeing the side effects of poor swallowing, I'm with the speech therapist. Perhaps some gentle coaxing on your part and support will encourage your loved one to eat more.

I'm just reading some of the answers here after submitting mine, and I have to say I'm appalled at the amount of non-professionals that seem to want to encourage you to go against the therapists recommendations. If you and the therapist can't communicate (it's a two way street), then ask for another therapist, but seriously, you MUST be more concerned about the well-being of loved one rather than your hurt feelings. Get a dietician involved for more high-calorie food, and observe your loved one eating. Maybe just the fact that he can't pick up the food to eat it is causing weight loss. But to say you can sign something in order to bring him food that would clearly be dangerous to him is wrong.

Most puree food tastes like crap and will not be eaten. Why not give him soft foods like beans and mix some peanut butter in it. Beans can be easily mushed up too. I did just that, and mom liked it. With baked beans, I would sweeten it with honey. My mom did fine with that for the longest time and she also enjoyed ice cream. Be mindful solid chunks of food can cause choking especially if they do not chew or forgotten how to chew. Meat is very bad. Most people choke on meat. Mom and I never ate meat anyway. It took me 1-1/2 hours to feed mom, but she had a diet of ice cream, beans and soy peanut butter. I thickened water and gave that by the teaspoon. Eventually she needed a feeding tube but her lungs were always clear.
By the way mum was an insulin dependent diabetic, but I kept her sugars in perfect control even with all of those sweets.