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dmdmetz Asked May 2011

The doctor is withholding liquid and food due to swallowing; can we demand the patient be given food and water?

The staff doctor seeing my father at the hospital has ordered dad have nothing by mouth because he thinks dad is aspirating everything into his lungs.and he wants to put in a feeding tube. Can my father refuse the feeding tube and demand to be given food and drink? He has asked to be transferred to another hospital where his own doctors go and will decide with them the best course of treatment but the transfer may take a day or two and he does not want to be without food or have a feeding tube down his nose.

Has anyone experienced this?

lillian41 Aug 2012
I am so glad you have had a good outcome. I have been dealing with this myself this summer with my mom. She was admitted to the hospital with multiple problems. She ended up having a kidney removed because it had abcessed. She did very well with surgery and was looking like she was getting better. The hospitals doctor said she needed a swallow study done, my mom was very weak from the surgery, they performed three bedside studies each time she seemed to improve then she had a mucus plug in her lung so had to have a bronchoscope done all this kept making her week. We ended up deciding as a family to have a feeding tube inserted in her abdomen. She has done ok with this. I do feel like with the swallow studies that were done while in the hospital she wasn't sitting correctly. I know for a fact the bedside ones were done with her in bed propped as good as you can be propped.the X-ray study was done basically the same way. She is back home in the nursing home now and will start therapy this week, I hope we can eventually remove the feeding tube, therapy says she needs patience and to be sitting in her chair. We will see. I fed mom before her surgery and she was swallowing just fine. I wish I would have stood my ground and been present for the test but I didn't. Trust your instinct and your gut we know our parents. Good luck to your family.

vjonesg7 Aug 2012
I think hospitalists are a mistake they do not know the patient at all and it seems to me they are not very good and reading records they are human and make mistakes. In the end I wonder how much they drive costs up. I am glad that things worked out for your father.

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dmdmetz May 2011
My dad was transferred to another hospital and was re-evaluated by his own doctor today. A swallow test with x-ray was done and I got to watch - fascinating. As I suspected the hospitalist was incorrect and my father was absolutely not having everything go into his lungs. He is back on his dysphagia diet today and happily able to eat again. A PEG tube is a possibility if his doctors agree it would really be of any benefit to keep him out of the hospital between episodes.

My advice is use your own judgment - you know your family member better than anyone. If you don't agree with treatment or want your own doc involved - make it happen.

We were told today that if the feeding tube had been inserted through his nose as the hospitalist had wanted it could have perferated a diriticula in his esphogas and caused a more serious threat than we already had.

I am so happy I stuck to my convictions and forced the issue of moving dad.

vstefans May 2011
Dmdmetz, it sounds like you were 100% correct to fire that doctor. From your descriptin he was arrogant and ignorant to just override the dysphagia assessments and pulmonologist with his own ill-founded prejudices. It would not seem he has your father's quality of life high on his priority list. Just my $0.02. Hospitalists, if they are used - it is NOT mandatory but an increasingly common arrangement - are supposed to work as a team with primary care and referring physicians, as well as with you.

dmdmetz May 2011
My father was seen in the ER by whatever doctor was on duty, but if his own doctor was affiliated with that hospital his own doctor had to give the authorization to admit him and then was the doctor in charge.

When my father was at a different hospital he was seen and followed by the hospitalist (I just started hearing this term this week) and the hospitalist has followed his case.

Jm May 2011
Hi .Has anyone else experienced this? My husband was rushed into same hospital his Dr affiliated with & his office in the same place,. It seems his own Dr can not go to examine him as you have to use what are called a hospitalist. Anyone else experience this? We prefered his own Dr, I guess this is a new rule now all hospitals

dmdmetz May 2011
Thank you all. I was upset and did not phrase this well. He has already had a swallowing test - 4 of them in fact, by 2 hospitals and a rehab center - all of which came to the conclusion that he needed a mechanical soft diet with nectar thick liquids.

It is this doctor who does no agree with all 4 assessments and is withholding food/liquid. This is a hospitalist who does not know my dad or his case. I talked to this doc at length last evening and his options were a) nothing by mouth or b) NG tube. I felt we were being strong armed into this decision and it is one my father wants to make with his own doctors, not a doctor not familiar with his case.

As of this morning after I've fussed a lot my father is in the process of being transferred out of this hospital and to the hospital where his own doctors have privileges. His own doctors are not in favor of a feeding tube for him at this time.

I'm finding I really need to educate myself on things so I know what I'm talking about with doctors. I also find I need to immediately identify myself as dad's primary caregiver for the past 12 years and that I am very familiar with his multiple issues and O2 needs.

This doctor also took him off BiPAP because of acid reflux. His regular pulmonary doctor finds BiPAP really helps him. Hopefully when he is at his regular hospital we'll get everything back on track.

vstefans May 2011
Depending on the details, which are best determined by a complete dysphagia evaluation with a dysphagia therapist and not just a suspicion, there may be other acceptable options. A feeding tube placement requires patient consent (or famiy consent if patient is not able) and can be refused though then the consequence could be repeated pneumonias that at some point may not be treatable. But there are usually consistencies of foods or techniques for fedding and swallowing that are safe or safer from an aspiration perspective. These vary on an individual basis. Thick liquids are often but not always the answer. It is also important to know whether just a little bit is going down the wrong way versus most is going down the wrong way; it is also important to sort out whether the risk is gradual progressive lung problems versus catastrophic choking events. Some people are at risk because of poor chewing and/or impulsive ingestion of large amounts at a time. Other are really at risk for aspiration only when they have vomiting. If this is not sorted out, you can end up with people thinking someone will choke to death on the spot if they have a sip of ginger ale or a lick of frosting, or be put on purees for a month after aspiration associated with a bad GI bug or migraine which serves no purpose.

Also, I find that not everyone knows about the Frazier protocol option if someone can eat but aspirates all but very thick liquids and can't otherwise stay hydrated without a tube; simplified, it means taking plain water by mouth but doing so only between meals after excellent oral hygiene has been provided. Here is a link to the orignial version of that: http://www.jhsmh.org/Health-Services/Rehab-Services-Frazier-Rehab/Specialties/Frazier-Water-Protocol.aspx.

There is literature that suggests neither quality nore necessarily even quanity of life is improved by use of feeding tubes in cases of severe dementia. This does NOT apply to swallowing problems that occur primarily because of stroke or other specific causes and many factors are involved. Other important things to consider are that feeding tubes per se don't mean a person can't take some foods by mouth, maybe just some tastes of safer consistencies for them that they can enjoy, while nutrition and hydration needs are met by tube. If an acute problem resolves, a feeding tube can also be removed if no longer needed.

Physicians are not always very educated or informed about these details, which can make all the difference in the world to someone's life and health.

Helensw May 2011
Here's another idea. He can accept fluid for a couple days through and I.V to buy some time till transfer. He should be O.K . without food for 2 days.

Helensw May 2011
Your dad should be evaluated by a speech and swallowing specialist at the hospital and they will determine if it is safe for him to eat or drink. They even can xray him to watch if food or drink is going down properly. Your dad has the right to refuse a feeding tube, he should have a living will or advanced directive indicating to you and his doctors what he would want if he could no longer eat /or drink the normal way. Sometimes a feeding tube through the nose is used just for a short time until he can successfully take food orally. Otherwise, you should really ask your dad what he would want, to be artificially fed through a nasal tube or Peg line through his abdomen if he cannot swallow and eat successfully. If he does not want that, he has that right to refuse artificial feeding .Make sure there is someone he has designated to be his health care proxy and know his wishes if he becomes unable to make that decision. Tough place to be in, I have been there.-H

allshesgot May 2011
You can but you may not want to. If he is more comfortable with his own dr. then by all means go to that hospital, however if it will only be a day or two he might want to takw some heed on what the other dr. is saying. At least until he can get a second opinion. Aspiration is serious. So is having an unwanted feeding tube. The hospital should be keeping him hydrated with an IV. He shouldnt starve to death in a couple of days time. Depending on his medical condition he should be fine as long as they are keeping him properly hydrated. As far as comfort, not eating would be far more comfortable than aspiration.Good Luck!

wesleyktb May 2011
I had seen it and there should be document proof of each time it happened. You may want to be there if they should let him have food again. There is a powder that they can put in his food and drink that will make them extra thick so that it is not as easy for him to aspirate. They may or may not have tried it...you should be able to check it out with your father's permission. Good luck !

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