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

I haven't read all the anwers yet, but just want to add this. While it may seem to you, that he's eating just fine while you are there, it may not be at is appears. If a patient's gag reflex is diminished, he very well may be aspirating the food, and NOT GAG. Not cough. They seem to be eating with no problem, but are NOT, despite appearances. . If you don't have a gag reflex, or have a really poor one, you just don't gag ! THAT means, that the person doesn 't not appear to have any problem eating. But in reality some of the food is entering the trachea, and into the lungs. Where , the body can't really expell it properly. And where it causes the patient to develop pneumonia. The speach/swallowing therapist is basing her decision on this factor. You need to understand it also.

I think if you have POA over him you have a say so. I had them take my mom off of it in the nursing home, because she was losing weight and didn't want it. But since then, she has asked for it, because it is easier for her and she won't wear her teeth. But they are still recommending thickened liquids, because she aspirates a lot. So maybe he could get just lightly chopped food and thickened liquids.

A therapist can't say no and can't demand anything. Neither can a nurse. Every resident (or their responsible party if they are not competent) has the right to make their own decisions - even bad decisions. They can eat what they want even if they have been educated about the risks of aspirating. Residents have the right to refuse their medications even if they are life saving or sustaining. They have the right to walk even if they are at high risk to fall and they have the right to go home even if everyone else thinks it is unsafe.

He must be a choking / aspiration risk or they wouldn't be setting these limitations.  They have ways to test the workings of the throat.  If he is an inpatient somewhere, it is a liability to them not follow medical advice if he has failed a swallow test.  If he wants to sign himself out AMA (against medical advice) he has every right to do that.  Then if he chokes at home, they aren't responsible.   The therapist must not think you understand the risk.

Haven’t read through answers so apologies if I’m repeating, haste your husband had a recent fluoroscopy guided by live X-ray, often called a swallow test? This is the definitive test of what’s happening when he eats and swallows and will show if he’s aspirating food into his lungs. It’s done using varying textures of food to see how much a person can handle. This is needed to know if the speech therapist is correct or if your husband can truly handle all foods without risk

There is a condition known as silent aspiration. This occurs when the epiglottis which is a flap in the throat that closes over to protect the lungs when a person swallows. Perhaps a video swallow is in order. This is a test in which a person swallows under flouroscopic x-ray. If a person is aspirating while swallowing, this test will show it. Pneumonia is a risk of aspiration. Have you spoken with the doctor? The facility is responsible for keeping your loved one safe and there are liabilities associated with the inability to provide care. Are there foods that he likes that can be adapted to a mechanical diet? Some facilities have had families s8gn a waiver regarding feeding which alleviates them from any responsibility legal or otherwisebshould you decide to continue feeding him a regular diet. It might be a good idea to speak with the administrator is well as the ombudsmen regarding the situation.

fire her

You have to be careful feeding him if he's been starved or dehydrated. He'll let down his defenses and take in food too fast to handle. He's at a higher risk of choking or aspirating.

Pureed food may be canned food that already comes in puree form, or it can prepared from fresh food using a food processor. I suspect that he doesn't like the first. If it's the latter, the food may lack condiments that make the food appetizing.

I would suggest not giving him regular food but preparing it in puree form after it's been cooked.

It isn't that he cannot eat regular food. It's the problem with the food not going where it's supposed to go. I watched them do the swallow test on my husband - one wrong swallow could have killed him. The food can go into the lungs.

With my DH, he would have to "double swallow" every bite because not all the food would go down - then he would breathe and the food wasn't going where it's supposed to go.

You don't say where your LO is, so I can't say who you need to talk to. But I can tell you, if something you bring to him makes him choke to death, you will have to live with that for the rest of your life.

My DH only had to have "nectar" thickness so that left us with a lot of options. You can take regular foods and use a food chopper to make them the right texture for safe eating. I only had to make sure everything was in small enough pieces so he wouldn't choke on them.

Tread very carefully here - one wrong step and you will feel the guilt. BTW, I finally found a thickener that worked on soda for him and he was able to have one a day - Hormel makes it.

This is a hot button for me because my father seemed to be doing ok with a mild UTI until the speech therapist decided he was "packing food" in his cheeks. Neither his regular doctor or I thought so but she put him on a pureed and thickened liquids diet, which the rehab nursing home continued. Everything looked like mashed potatoes which he didn't particularly like. He needed to get stronger and he didn't. He died in the nursing home. I pulled the hospital records and discovered his swallowing test was negative. Ask to see the test results, ask for a second opinion, bring in your own doctor. Now I will say in retrospect that my father also ate too fast, which could be a reason they think they are at risk for aspiration. He also had a chronic dry cough. The speech therapist needs to work WITH you.

If your loved one is in a nursing home, under Federal Law he has a right to refuse. This includes any aspect of his care, medication, diet, therapy, showers, and any treatment. If your loved one wants to eat the meal you bring him it is his right. The home by law should explain the consequences of what may happen if he eats a regular meal instead of the mechanical soft, he my chock, aspirate but the final decision is his. The home cannot threaten to discharge him for exercising his right to refuse.

Here is my take as an RN from both sides.

Facility/Speech therapist: Speech therapy does the evaluations and gives diet based on how the client performs. If client has swallowing problems - and it seems your LO does - then speech tests to see which diet is safest for client. She should be asked to perform another swallowing evaluation - and you NEED to be present. She would prefer if you would bring foods recommended for your LO swallowing performance. If you insist on bringing foods your LO has "failed" to swallow well, you set LO for aspiration pneumonia or dying from asphyxiation. She has an obligation to make sure her clients suffer no harm.

Family: Your LO prefers food from home, naturally. Family want to provide comfort and "treats" for their LO when they come to visit. No facility can provide the quantity for foods needs and the flavor/texture profiles preferred - so families "help out".

My take: Ask for another swallowing evaluation and be there. Work together with the speech therapist to talk about what foods you can safely bring for your LO.

If the individual is in a rehab program, non-compliance with the plan of care could result in his discharge from the entire program. Is that what you want? Unless you have POA, your opinion is not what matters here. Speak to the doctor about what diet is medically necessary.

The therapist must have her reasons for not recommending home made food. Have you met with his doctor and discussed this? You have rights but please keep in mind going against the advice of professionals could cause him serious harm. Not knowing where he is, I would seek advice from higher ups and his Doctor about this but for the time being, until told otherwise, you should take the therapists recommendations seriously. JMO and good luck to you.

taarna is absolutely correct. Speech therapists work with patients and families on the appropriate diet to reduce risk to the patient from swallowing difficulties. One of the chief swallowing difficulties is aspiration of food or liquids, which may cause choking or aspiration pneumonia. Either of these can lead to death.

The trick here is to work with the therapist. With mom, we prepared all sorts of her favorite foods and altered them to meet the required consistency. Then the tests were repeated at regular intervals and we all adjusted. We also worked closely with other clinicians when mom was in rehab to alert them to dietary restrictions.

I know it's difficult to partner, but in order to do so effectively, we need to understand the "why" and then work together creatively on the "how." With your efforts in synch with the clinicians, you can achieve great results.

You want the "right" to send food into his lung? Because that will kill him quite quickly. Here is the problem. You don't say the reason for this. Is this a stroke? If so it may get better. If not it is unlikely to improve, meaning a puree diet for life. Some would rather not live after that, and I would be one of them.
The problem is that the speech therapist is trained to assess the swallow. If the swallow is not good food passes from mouth to trachea and bronchi instead of to the esophogus and into stomach. As a simple explanation. That food, going into the bronchial tubes is fed into the lung where it cause almost instant "Aspiration Pneumonia." Google "aspiration pneumonia" to give you a good overview.
I am sorry you are being treated with rudeness. You are desperate to save the person you love AND make life worth living for him. You should be treated with respect. The Therapist should be drawing you pictures and explaining the very real complications involved. And the assessments should continue now every few weeks.
You don't give us any details here. Who is this person you love. How old. What has happened to cause this problem.
I am so sorry for your grief. You will, I guess, have to get your information over the internet about swallowing and the dangers thereof. That shouldn't be the case. Remember to speak gently and calmly; don't let it get into the realm of a power struggle, because you are fighting for the rights and well being of the one you love, and you need to go at this as a team, not as enemies.
Love out to you and hope you will update us.

It is important to keep the food at the level of consistency that is recommended. My mother-in-law has been on homemade food run through the blender for over ten years. She has a cough reflex but cannot chew. Her husband had several strokes and went from soft wet food to a port and bag feeding with limited mouth feeding. He likely died from aspirating some chocolate pudding (his favorite) leading to breathing difficulties. It might have just been his own saliva collecting and he was too weak to expel it.

My take would be to try foods that he likes and put them in the blender with just the right amount of water or bone broth to achieve the correct thickness. Limit the rate of consumption as that will also lead to choking. That also happened to my father-in-law. Make sure they have actually swallowed the last bite and are not just collecting food like a chipmunk.

I want to address the issue of ignoring medical advice and eating a non dysphagia diet.    Just refusing to eat a mechanical soft or pureed diet as recommended by a speech therapist opens up other issues.

1.   I understand the perception that medical professionals are here to serve patients and their families.   Most of the ones I've met are really here b/c they WANT to care for people; there is a difference, but it's not a cavernous one that can't be crossed.  And sure, there are others who have different reasons, but they still deserve respect for their knowledge and training, which we don't have.

However, they're not servants; they are educated professionals and deserve to be treated as such.   For anyone who disagrees, reread the posts and note the difference in perspective, calmness and rational analyses of their responses.  

2.    Liability, as has been stated.    During a 20 year period during which both my parents and my sister were in short or long term (several months) recovery or rehab at a total of over a dozen facilities, we always worked out potentially contentious or similar issues, except at one facility which was so bad we decided to find another place by the end of the first day.   

I won't deny that it wasn't always easy, but the rewards were better working relationships, better care, and happier families.

These are perhaps some of the most challenging times families face, and it's not easy finding a safe and navigable path, but it's worth the effort.   Unfortunately, some of what I've read this morning doesn't reflect that dynamic.

3.   I'm sure that no facility is going to want to accept, adhere to and contribute to conditions which jeopardize a patient's health.   Why should they?

It may jeopardize their Medicare reviews and standing, as well as medical standards in the community for similar situations (this relates to malpractice standards).

4.   Not only would a liability release likely be required, but I'm sure there would be an indemnification, hold harmless and defend clause as well.   If you're not familiar with this, you should be aware that it's a type of exculpatory release.   If anything did, or when it does happen, you have no claims against the facility for any issue, unless the clause specifies selected issues which typically isn't the case.

I'm not a proponent of medical malpractice litigation, especially since I've worked for Med Mal firms and seen how attorneys attempt to make cases out of unfortunate situations.  But you should be aware that in effect you're waiving any rights you might have for issues even totally unrelated to dysphagia (assuming the indemnification is as broad as I suspect it would be.)

5.   I think the more likely case from any kind of refusal action is that the facility will advise that they (a) need the room and (b) no longer have space for your father; (c) Just advise you bluntly that failure to cooperate with medical advice makes you an unwanted participant, and (d) they do not wish to care for your father any longer.

Luisa, think seriously about this kind of misguided "advice."


I want to extend support though for those who actually have been through a dysphagia sequence and understand the risks.   These are the people whose advice should be heeded.

It's also unfortunate that this whole concept  isn't clear to everyone.    Please try to locate a video demonstration of the effects of aspiration, and worse yet, of cyanosis.   If you haven't seen someone choking to the point that his/her face turns red, or worse yet, blue, you need to if you think it's that easy to ignore and/or reject medical recommendations for dysphagia diet and precautions.


Even w/I defined dysphagia levels, situations vary.   Milk shakes & ice cream are  good examples.    When more solid, they can be acceptable, based on the guidelines (which anyone caring for someone with dysphagia MUST read).   W/I a few minutes, as they begin to melt, they are no longer acceptable.

My father had a similarly minded speech therapist when he was in for rehab. He was annoyed that she kept sitting with him at lunch and dinner, watching him eat and altering what he was allowed to have. He said it was bland and grossly textured. She moved him through different levels of diet and 'discharged' him with the reminder to take a sip of water after every bite is fully gone from his mouth. She told my mother and I that he needed things cut into small pieces and would need reminders, but was okay. For other reasons, he's now in LTC at the same facility and... he does none of things she claimed she taught him. We take him his favorite cookies and break them into small pieces... and he puts four pieces into his cheek before he starts 'chewing.' And he gets offended when we ask him not to do that.

But... I saw him choke on food once, about a year before he went into the nursing home. I called 911 because he wasn't breathing. My mom gave him the Heimlich while I was on the phone, and it worked. But it was terrifying. He was terrified. We could see that in his face. My nephew was 3 at the time and he saw it all, and he still worries about "I hope Grandpa doesn't choking..." every time his grandpa eats something around him.

So my advice is this... you deserve to be treated with more respect but maybe consider that the therapist does have your LO's best interests at heart, just misguidedly, and if you bring him food... be with him when he eats it. That's what we do.

And my father's NH does have him eat lunch and dinner in a supervised dining room where some people are fed by staff, assistance is provided for troubles cutting and opening, and is next to the nurses' station, I assume in case of an emergency. Maybe your LO's place has a room like that?

I would not blatently over ride the Speech Therapist. Has she explained WHY he is on a mechanical diet? If you don't trust her findings you have the right to get a second openion. But don't keep looking until you get the answer you want to hear. Maybe your Dad really likes your cooking or the fact that uou have prepared something for him. See if he will eat it even prepared per the SLP's directions. As a treat, and to bulk up his caloric intake (keeping in mind any diatare restrictions like diabetes or CKD, etc) bring him milkshakes, his favorite puddings, what ever treat that fits the food prep guidelines. Work WITH the SLP, not against her. The professionals are not always right, but make your decisions from an educated point, not an emotional one.

Ask to see the results of the swallow test. My mom was on pureed food after her stroke and she wouldn't eat. The speech therapist said they would do a swallow test to make sure she wasn't aspirating her food and that it was all going down her esophagus. After the swallow test the switched her to regular diet. It also may be your dad just doesn't like the food at the facility. Where my mom was, the food was very bland and unappetizing. See if the facility will supplement with Ensure or Boost.
Aand, report the speech therapist to the director of the facility. There is no need for her to be rude.

Ask for a second opinion - that should decide whether further steps are to be taken in the first instance. I appreciate your frustration. Hospital thought my mother had either had a stroke or had forgotten how to swallow, it was only after several days of a horrible clear gel (not even proper jelly) that the staff were allowed to try just pureed food, then minced, then finally food in its natural form. She had been having minor semi-choking episodes at home for some years but the ST was insistent when she went to hospital. Just doing her job I suppose but frustrating all the same. My mother has dementia, depending what time of the day she is eating, and whether she is managing herself or being fed, she still has minor chokes. She pays for the privilege of choice of meals, if it is the bad time of the day the staff make the appropriate choice for her and just tell her it is nicer than what the other people at the dining table might be eating. This does not tell you your rights, but it demonstrates that you are not alone with the argument with STs.

Change ST...it's that simple. Bring him high calored protein drinks (low protein, high calorie) if he is not taking one already. You don't say why the ST is doing that. How old, weight going in and now, why & where is he in?

When my dad had pneumonia as result of dementia, they put him on pureed food. He hated it. From my understanding while the speech therapist recommended this, she could not make us do it.

My dad hated it. He didn't live all that much longer anyway. If I had to do it again I would let him eat regular food (within reason) so he could at least enjoy eating his last weeks. He may have died sooner, but died happier.

Aspiration pneumonia is deadly. As long as he is being actively treated for his condition, he must follow the prescription of the therapist until a new evaluation allows him an upgrade. If his condition results in being placed on hospice services (meaning he is terminal), hospice takes a different approach about food and the patient is often allowed more free rein. Trust the professionals. I understand your dad's frustration. It seemed that in my experience with loved ones on diets that required food to be "blendered" the resulting meal was clearly visually unappealing and often lacking in flavor and that gets tiresome very quickly. Maybe there is a way to improve his meals without being non-compliant with the therapist's prescription. After all, the aim is to make the patient healthier.

To aspirate food is deadly. That will quickly develop into pneumonia, of which he may not recover.

This is your father's decision. That's a plain and simple conclusion, but it's the end of a series of questions.

1. Has the therapist found a swallowing impairment? Yes. She is therefore correct to prescribe a modified diet, to reduce the risk of your father's inhaling food/fluid and developing potentially lethal complications from that.

2. Has the therapist explained the risk to your father? Let's say yes, she has.

3. Has your father understood what the therapist explained? - do you think he has? Is the therapist satisfied that he has?

4. Given that he understands the risk, your father is still free to make his own choices about what to eat. The therapist can advise, recommend, and prescribe appropriately; but once she has done that she has fulfilled her professional obligations. If your father chooses to disregard her advice, that's up to him. He may be required to sign a disclaimer.

The therapist's attitude to you is unfortunate, but you would do best to assume that she believes she is acting in your father's best interests and continue to try to work with her. Is there any room for compromise? - for example, can you adapt your home cooking so that it meets the SLT's prescription?

My opinion as a gerontological nurse, nurse manager, and former nursing home inspector:

The speech therapist is acting on her assessment that your father is at risk for aspiration if he eats unaltered food. She is required to make recommendations in accordance with her professional standards.

At the same time, if your father does not have cognitive problems, and can understand the risks, he can choose to not follow those recommendations. If you are his legal agent, and understand the risks, you can act on his behalf and not follow recommendations.

Certainly, aspiration is very serious and can lead to death. Significant weight loss is also very serious and can lead to death. Also to be considered is that restrictive diets contribute to depression and to weight loss.

The issue becomes a matter of quality of life.

Everyone (whether in a nursing home or not) has the right to refuse treatment/recommendations. We may not agree, but it is the same as a person declining to stop smoking, lose weight, accept chemotherapy, etc., etc. Federal (and state regulations) include this in the rights, in no uncertain terms. Nursing homes have been cited for not complying with the regulations regarding rights to refuse treatment.

So, do we force people to do what we recommend to prolong life? Will he die from malnutrition or possibly aspiration?

One of my residents was in a similar situation. He had a feeding tube because of aspiration. After some months, he refused to allow us to use the feeding tube because he wanted to eat. His doctor refused to write an order for him to eat. He continued to refuse the tube feeding and rapidly lost weight. A different physician (a geriatrician) with more authority recognized his right to choose, and wrote the order for him to eat whatever he desired. The resident was never able to eat enough to be healthy, but he was satisfied that he was able to at least take a few bites of the foods he enjoyed. He never did aspirate after we reinstated his diet.

Your father can do whatever he wants. You are not going to alter the speech therapist's assessment and recommendation about the mechanical food. It is your father's choice to accept it, or not.

Any diet can be turned into mechanical soft. The food you cook for him can be turned into mechanical soft. You are not complaining about the diet but rather the texture.

Recognize that if your father eats regular texture food that he may choke.

elaine: I am so very sorry to hear about your mother. A friend of mine has a disabled four year old who cannot eat by mouth. She has been tube fed since birth. Yet she has gotten at least 20 to 25 aspiration pneumonias. Her mother also has 5 other children and usually treats the disabled child at home IF SHE CAN (meaning child's temp does not go higher than 105) because a hospital is a "petri dish," e.g. the child gets more ill.
My mother suffered an ischemic stroke and lost the swallowing reflex. I cannot imagine a thickened water. Wow. So sad. Prayers to you.