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"Tube Feeding" — Right or Wrong: The Medical, Legal and Ethical Issues
PEGs and the Law
Starting with the case of Karen Ann Quinlan in 1976, the United States courts have spoken loud and clear about the use of life-sustaining treatments and artificial nutrition and hydration. The courts have repeatedly upheld the principle that competent patients may refuse or withdraw any medical treatment, even if that treatment is necessary to sustain life.
In the Nancy Cruzan case in 1990, the majority ruling of the U.S. Supreme Court held that there is no difference between the termination of artificial nutrition and hydration, and other forms of treatment. Furthermore, the American Medical Association, a President's Commission and almost every appellate court decision have agreed that artificial nutrition and hydration is a form of medical treatment that may be legally refused. Competent patients have the legal right to refuse tube feedings.
The American Medical Association, a President's Commission and almost every appellate court decision have agreed that artificial nutrition and hydration is a form of medical treatment that may be legally refused. Competent patients have the legal right to refuse tube feedings.
But what about patients who cannot express their own wishes? In the Quinlan case, the court determined that family members may refuse life-support on behalf of an incompetent patient. Only two states, New York and Missouri, have strict requirements that surrogate decision-makers present "clear and convincing" evidence that the patient, if he or she were competent, would not have wished artificial nutrition and hydration given their present medical condition. Courts have recognized written statements and conversations with family and friends as constituting "clear and convincing" evidence.
To assist physicians and families in making medical decisions for incompetent patients, most state legislatures have passed laws allowing advance directives to be honored. An advance directive is a statement that a person makes, while competent, expressing their wishes about treatment in the future, should they lose the capacity to make decisions. It may provide written instructions about treatment (a living will) or may designate another person to make treatment decisions (a proxy or durable power of attorney).
All health care facilities receiving Medicare or Medicaid are legally obligated to provide their patients with written information about their rights to accept or refuse medical treatments. Patients admitted to these facilities must be provided the opportunity to complete advance directives. In cases where no family member or legal instrument are available to determine the wishes of an incompetent patient, physicians generally err in the direction of preserving life as long as the anticipated benefits of treatment outweigh the burdens.
Although each state has its own set of laws about terminating life-support, there is usually nothing to prevent tube feedings from being legally withdrawn after they have been initiated. With the exception of Illinois, no state requires a physician to seek a court order to withhold or withdraw tube feedings. Rather, the courts overwhelmingly favor allowing such personal and emotional issues be dealt with directly by family and through the physician-patient relationship.
Whatever the law has to say, withholding or removing tube feeding can be ethically difficult and emotionally wrenching.
Patient autonomy is a strongly accepted and protected principle of medical ethics. This principle was stressed in the drafting of the Nuremberg Code in 1947, which sought to protect patients from unwanted medical procedures. According to the principle of autonomy, patients have the right to decide their medical treatment and medical treatments may not be imposed.
To protect patient autonomy, informed consent must be obtained prior to performing an invasive procedure. Informed consent insures that the patient understands the risks, benefits and alternatives to a procedure in advance. This applies as well to PEG placement.
In situations where the patient lacks the capacity to make medical decisions, physicians need to help families and health care proxies make decisions based upon the patient's values and not their own. A doctor may ask, "If your father could tell us whether or not he would want a PEG, what would he say?" or "Did your father ever express an opinion about life-support or artificial food and hydration?" The goal of this kind of questioning is to identify the patient's values and wishes, which may differ from those of his or her family.
There are two basic value systems regarding artificial food and hydration that are commonly encountered. Some people, perhaps based on religious beliefs, regard all life as valuable and worth preserving. They may choose to continue artificial food and hydration no matter what their clinical condition because without food and water they would surely die.
On the other hand, others may value the quality of life preserved over the quantity of life preserved. They may regard clinical conditions such as a permanent vegetative state as lacking a sufficient quality of life to be preserved. They may view the provision of artificial food and hydration as merely prolonging unnecessary suffering. If the intent of withholding artificial food and hydration is to relieve suffering, they may feel it is justified and humane.
NOTE: We regret that we cannot answer personal medical questions.
(25) Comments have been made
I lost my mother on 11th August 2011. She was my best friend, since the age of 12 it was just me and Mum as Dad left. We were very close. on 24th December she has a massive stroke, the doctors said that she would be severely disabled. She was 71 years old and prior to the stroke lived next door to me but was independent, intelligent, loved her garden, her privacy but all that was taken away from her. She had a second stroke a few days later and the decision was made to take her off fluids and let her pass but she didn't, the brain swelled but not enough to reach the skull. Was that a good thing that she survived? She spent the next 4 months in hospital and against my wishes a PEG was placed just so Mum could They told me that my Mum was unable to make that decision for herself and as she hadn't made a living will I had no say in the matter. I did get her home though, with carers and my husband and I would take it in turns to stay over when the carers were not there. She was doubly incontinent, no conversation, she could not turn as was paralysed down her right side. She had lost everything. We made the best of it and were planning for the future when a month later she had another stroke. the doctor came out and said she had pneumonia, she didn't but they took PEG out. They showed compassion that the hospital didn't and I slowly watched my Mum pass away, it took 8 weeks. Some would say she starved to death, she still had fluids but the hospice consultant and doctors advised that my Mum wasn't getting any better and she passed away, a shell of the women I loved in a hospice in August. To this day, I live with guilt and upset and I am torn between what was the right thing to do. It was a medical decision to not put the peg back but and I truly believe it is what my Mum would have wanted. She would have not wanted to lay in a bed day in day out, having someone clean her and change her. Has anyone else experienced this? Counselling hasn't helped.
Posted Thu, Feb. 6, 2014 at 6:02 pm EST
I have a 37 year old daughter who was diagnosed with a neurodegenerative disorder 3 years ago, and has been wheel chair bound for 2 years. Prognosis is that she will continue to decline, rate of declining is always unable to be predicted. Daughter from age 3 y.o. diagnosed with moderate/severe mental retardation. I am her Legal Guardian for all aspects of life. Eating is a challenge for her, and has been hospitalized two times in the last year with asperation pneumonia. After researching PEG feeding tubes, and asking myself IF I were in my daughter's shoes, would I want to continue living if I had to endure her physical pain, dystonia, contorted limbs, unable to turn self in bed, unable to express pain her entire life due to retardation......I don't think I would want to exist in that mental/physical declining status. There aren't any medications to cure this, or delay this disorder from shutting down the brain, which in turn will shut down her organs. I pray for every loved one who has had to make a decision to say yes to tube feeding, or to say no.
Posted Sat, Jan. 11, 2014 at 4:55 pm EST
My grandmother is in the hospital and Ned a tube but the doctors cannot insert through nose because she is too dehydrated is this accurate what else could be the problem of why they are having problems? Her miss bleed when they try. My email is Dora.tillis@ gmail.com.
Posted Fri, Nov. 29, 2013 at 10:37 am EST
Writing about my 82 year mother with dementia. Peg feeding tube can infections as stated in side affects. How is it supposed to be cleaned what procedure is used? Can a feeding tube be placed in the same area twice if it causes an infection? I have known for people to have it placed on the other side of the stomach if one side already caused an infection. It seems like some of the better nursing homes have the patient eat normal and a feeding tube is used if needed. How many peg feeding tube surgeries can one person have? Whats the average amount of time to have it placed surgically? Is surgery the only way to put it in and do most patients have to stay in the hospital overnight to do it? Thank you I really think you web site is excellent
Posted Thu, Mar. 14, 2013 at 12:48 pm EDT
My mother having dementia had a peg tube surgery . The first time and second time causing an infection so it was removed and after waiting for the infection to heal it was inserted a third time. I was inquiring if this is futile maybe now take it out would be best and not have a third surgery since my mom does have dementia and is 82. The area being closed up to heal and leave it be since she will eat and be helped and I wanted to know if being around family again socializing and helping her to eat certain easy foods could be good and not so invasive to do a third surgery.
Posted Thu, Mar. 14, 2013 at 12:17 pm EDT
I am inquiring about the peg feeding tube which my mother being 81 years old had placed and caused an infection...then it was taken out waiting for the infection to heal. Several days and weeks after the feeding tube was put back in the same place which would be surgery number two. Then still being in the hospital after the second surgery causing an infection in the same area. The infection from the second surgery the doctor this time felt it's best to close down the area and not insert it again. But the doctor said he would leave the decision to who ever is in charge and this time either insert the feeding peg tube for the third time or close the area and leave it out..so we waited for several weeks with my mother still in the hospital and then the feeding tube was put back in the same place being the third surgery same area of stomach where in infection was. I feel if it's futile to do it once; having feeding tube surgery..3 times seems very invasive and closing the area would have been better for her. I just wondered if it the normal to have it done 3 times or does it seem like too much for someone with dementia to have to go though so many surgeries. I have read your imformation stating once is futile and 3 seems like a lot of times to put in a peg tube..Is it better to use a different area being put it in on the other side of the stomach if there was a infection twice from the first two surgeries? What seems good for someone with dementia and infections from all?
Thank you: I very much like the information on you website so that's way I am asking questions on what most doctors feel comfortable with since the peg feeding tube isn't the easiest surgery for seniors and reading after the surgery it has been known to the patients have been know to die from all.
Posted Thu, Mar. 14, 2013 at 11:45 am EDT
My mother had a guardian put in a peg feeding tube which was something she would not want. The part that disturbs me for the suffering was that my mom was in the hospital for 7 weeks first hypothermia over medicated at nursing home which happen several times and then 3 feeding tube surgeries because each time caused bad infection. I ordered to stop all and the hospital reports stated by surgeon for 3rd time take it out and close down the area or insert it again ...I know and feel it was futile to do 3 times and no one listened so the night of sugery 3 on the phone being 200 miles away and not allowed visitors my mom cried out to me on the phone and said she felt so very sick ...by 1 am 3 hours after she talk me she went into ICU unconscious and very sick then died...I feel this was so very unethical and inhumane...is this not the normal 3 surgeries to reinsert the peg tube waiting in the hospital for infection to clear up and keep doing...my heart is so broken for my mom being so loving and having to suffer for she hated going to doctors and hospital...my husband an attorney and myself could not believe the nightmare of a guardian taking over my mothers all for the love of stealing and expolitation for the money taking away her life in a corrupt system and in charge of making these medical decisions without even a high school diploma...but common sense and family were not involved when reports said the doctor should consult with family members...3 surgeries seem too much for someone my mom I know would never want a feeding tube which she always told me....Please tell me what you feel and think about such actions doing to another human being. I feel 3 can't be a normal thing to do.
Heartbroke for my mom
Posted Thu, Mar. 14, 2013 at 10:35 am EDT
what can you put in a peg tube that will put weight on fast?
Posted Tue, Oct. 9, 2012 at 4:33 pm EDT
Joan from Ontario
My 75yr old husband has Dementia with Lewy Body Disease. Of course he has Dysphagia for which he has a puree diet & thickened liquids.He aspirated 1 month ago, and was quite ill with High Temp.High B.P.and Rigor Tremor, No pneumonia. He is still able to communicate well, and a Geriatrician-discussed with him DNR/Advance Directive. My husband agreed on DNR having previously had a quadruple Bypass,He does not want Tube Feeding.
Posted Sun, Jul. 29, 2012 at 12:08 am EDT
Sal from WDC
2011 was a really trying year for me - my mother was admitted to the hospital on my birthday Jan. 10th and never returned home and passed on May 22, 2011. She was 75 y.o. and meanwhile I was home with my father who was 85 y.o. and he did okay for a couple of months - And then he did not want to eat his normal food or drink much. two e.r. visits - dehydration,uti and pressure sores. The last visit the doctor said he was severely malnutritioned and he lost so much muscle mass and his skin was paper thin. After speaking with the Nutritionist and doctor the plan was to try different diets to c how thing go - things did not go well - my sister and I decided on the PEG. Make sure you get all the information pertaining to the procedure - I was baffled to find out that this artificial feeding is all they get. After the procedure at the hospital - I saw the Nurse administered water and soft food by mouth. But when he went to the Nursing home he was not allowed nothing at all. I had a hard time with this Procedure and seeing how it wasn't helping - I wish he could of just died naturally - to me it was like forced feeding and with his dementia state of mine and no directive to make the decision it was sort of rough - I really think he wouldn't want it. A month later he expired and his suffering was over.
Posted Fri, Feb. 17, 2012 at 3:50 pm EST
Jenni remember God made man theryby he made science , but he is the one and only creater of all and the last thing u loose is faith and miracles could happen and recoveries do occur, as well as wrongful diagnosis. I feel what u feel, but u may not be feeling what others feel,we must only learn to sympathize and pray to da lord that u r never face a situation like this and that if u do u r able to follow up with what u claim these people should have done and just let go of ur loved one. I feel because faith dies last, u might just sometime come across a situation where u just can't let go. prayers and think this over oh, and do a living will if u haven't cause those who love u may not think like u and could happen that they decide for u in case of an emergency.
Posted Sat, Jan. 7, 2012 at 11:45 pm EST
My mother in law had a serious stroke 3 weeks ago, the specialist team looking after her care told the family there is no hope of rehabilitation, she is paralised on the right side can not talk or communicate, she is alive but not living so WHY was a peg fitted 3 days ago ? this is insane, why would a surgeon do this operation on a person who has such a sad future. She is being placed in a nursing home tomorrow and although the family are saying they will visit her often I cant help but be angry they have set there dearly loved mother up for a life of indignity and loneliness all because they could not let her go,this dear woman could live a long long time with the peg attached. Please people if you are faced with this situation be strong and let your loved one go.
Posted Mon, Jan. 2, 2012 at 10:35 am EST
I had a cancerous tonsil removed on 6/3/1 and started radiation two weeks later. The radiation has killed my salivary glands and, temporarily I hope, my taste buds. It has also made my throat so sore that swallowing anything, other than tiny sips of water, impossible. After lossing 40 pounds I went to the radiation nurse practicitioner and asked for a feeding tube. It was strongly discourage for some of the reasons listed here. In August, with my weight down over 50 pounds and three trips to the ER for dehydration and severe vomiting, I insisted on a feeding tube. It has been a month and it is a god-send. My weight has increased by a few pounds, my energy level is back and my clarity and demeanor are much improved. I'm 60 and in good health otherwise. I feed myself with clinical strength Ensure and keep the stoma site very clean.
To me, the feeding tube has been a positive experience with a minimum amount of discomfort. The feeding and cleaning procedures are straightforward, simple and take only minutes. I sympathize with all who have had issue and wish you well.
Posted Mon, Sep. 26, 2011 at 9:43 am EDT
I am 44 yrs old and was in a plane accident. A PEG was installed in me while was unaware. I spent three weeks unaware and heavily medicated. My recovery was faster than anticipated from head trauma, broken arem, burnt back, etc... For some strange reason I still lost twenty pounds and I extremely dislike the PEG now and want my life back as I'm getting better.
Posted Mon, Aug. 15, 2011 at 9:10 am EDT
Hi, my mom passed away this year, March 24, two days later had to take my dad to walk in clinic, long story short, ended up in hospital, got discharged there about two weeks ago, ended up having small heart attach, first one massive, 20 years ago, broken heart, would have been married 60 years this July, about a month ago received the peg tube, my dad is 81, very tiny and skinny, on 8 hours of the day hooked up, many problems, accidents all the time, have 24 hour nurse on at home, pain, now on codeine, really has deteriorated since he has been discharged from hospital. We had no idea it would be so difficult on him as well as us. I highly recommend to think twice. We are only prolonging his unhappy life without his wife anymore, can't eat or drink by mouth, tied down to his bedroom 8 hours of the day, after he is disconnected from the machine, he's too tired to do anything, doesn't even get out of bed anymore, not fair. Don't do it under the same conditions as my father.
Posted Wed, Jun. 22, 2011 at 1:41 pm EDT
My Dad had a massive stroke three years ago and it affected his swallowing. My stepmother (who did not have the legal right as my brother and I have power of attorney) had them place a feeding tube rationalizing that it would only be temporary that he would get better. I've been a nurse for 30 years I saw the scan I knew he was not going to recover. He doesn't know who we are wxcept on very rare brief occasions his mind his fading fast due to the trauma from the stroke and alcoholic dementia. He gets beligerant, aggressive and combative at times. He's trapped in a body he can't use, he has right hemiplegia, and is incontinent of bowel and bladder. When my grandmother (his mother) had her stroke they put her feeding tube in and my Dad watched her have to live her last days the way she did and told me and my brother that he never wanted to live his last days like that. Well guess what, that's exactly where we are. Had I been at the hospital when the decsion was made I would have fought against tube placement. I am looking for a legal and ethical way to discontinue his feedings and water. Yes his heart and lungs are working just fine. He has to be sedated to sleep and combativeness. His left arm and leg can 'HIT' you just fine. He has to be given medication so he won't aspirate. But I know my Dad doesn't want to live this way. Anybody got any suggestions. my email is email@example.com
Posted Mon, Mar. 7, 2011 at 10:04 pm EST
We are going through a very difficult situation right now with my mother, she is 85 and a week ago had her second stroke. It is now very hard for her to swallow and she is not getting sufficient nutrition, she is bedridden however she can hear, assent sometimes, sporadically talk, reply to questions sometimes... but she is sort of "gone" most of the time. She had her first stroke five years ago, then was diagnosed with cancer about 18 months ago and underwent chemo with good response to her treament... and now this again. It is very hard to just not do anything and let her die when we could potentially help her, given that she is still partially with us. I know she understands that something is wrong with her... she loves life and it is very tough to just let her go. I wish she could tell us what to do.
Posted Mon, Feb. 7, 2011 at 8:23 pm EST
After a knee amputation my mother who has dementia was unresponsive. I was against a feeding tube but my mother's doctor said gives her a chance, it was suppose to be temporary but it has been two years. Once it was in it was really hard to justifying removing it because before the amputation she refused to eat or take her medicine and was susceptible to bedsores. She still refuses but she does not get as many bedsores. I know the only reason she is here is the feeding tube. I feel guilty she is on it but I am glad she is here.
Posted Sun, Sep. 26, 2010 at 2:50 pm EDT
I take care of a man who is 71 years old. He has had a peg for one year now due to a stoke. He can not talk, walk, move his arms or do anything for himself. It is so sad to see him in this state. Please do not start a peg since it is difficult to stop. This poor man's wife now feels like she has to continue or he will starve to death. Unfortunately, he is already dead since he has lost all ability to do anything including sharing his feelings. He is a prisoner of his own body. Basically, he is being forced to live. If your loved one is unable to ask for a feeding tube or peg, I highly recommend that you do not give it to them. Give them comfort care so that they may die in peace as God intended. We may feel that God has given us this ability to feed them but he has also given us the gift of death from the pain and suffering of this world. It is part of God's plan. Why should be question it? If you can decide to get it or not for your self, then by all means get it. You do need it if you can still communicate your need of nourishment. But please don't force food on anyone who has no life left in them. It is cruel and unusual punishment that is as bad as prison.
I hope that my perspective can help someone out there in need at this critical time in their life. Remember that no one can avoid death and to talk to your loved one about these matters before a crisis hits. But if it hits and you haven't discussed it. Do the humane thing and let nature take it's course. It's ok and it's the way God intended it to be. God bless you always and give you peace.
Posted Sun, Sep. 12, 2010 at 11:51 pm EDT
My husband (61) suffered a stroke two weeks ago and is still in the ICU fighting pneumonia, and high blood pressure, breathing, infection, and swallowing issues. The medical staff at the hospital are pushing the feeding tube, have been since day one. I am very disturbed by their "rush to judgment", as they have not considered my husband, who has always said he does not want artificial means, feeding tubes EVER and a living will that says so. He has a feeding tube through the nose at present. Even with my husband indicating "no" the medical staff wants "to peg." The pressure is tremendous and I feel they are not listening to my husband, me or my children who feel so strongly that their Dad should have a say so in this. What happens if we PEG, and it doesn't work, inflicts further pain and we can't remove it?
Posted Sat, Aug. 7, 2010 at 11:52 pm EDT
We just made the decision to place a
PEG into my dad today. I am torn with my decision. I have grave concerns. I am just praying that this will allow my dad to go home and be at peace.
He does not have a living will so this decision was left up to me, his wife (remarried after my moms passing)and a dear cousin who is his caretaker. This is such a painful decision to have to make.
Posted Wed, Jul. 28, 2010 at 5:11 pm EDT
this is an extremely dangerous procedure for some patients and deaths as a result of it are being left unreported. I intend to attempt to change this status quo.
Posted Tue, Feb. 23, 2010 at 2:40 am EST
Very informative article.
Posted Sun, Jan. 24, 2010 at 10:16 am EST
Thank you for posting these articles about the PEG. I found them very helpful and insightful. We are facing the decision and don't know whether or not to have the tube removed from my 90 yr. old mother who got the PEG after having a stroke a year ago. Rehab was tough and unsuccessful. Before the stroke, she was still living independently and mentally sharp. Now she is completely bedridden, not yet fully demented--remembers family and things, has no interest in eating or in anything else, and is always in pain and medicated. It's painful to see what she's become, and we don't want her to suffer anymore.
Posted Sun, Jan. 17, 2010 at 8:53 pm EST
i had cancer in my toncils and by radiation i cannot swallow. ihad a peg since 2003. i am no 59 years old. how long or great are my chances of keeping my peg at old age (about 80+) is there an alternative to this problem?
Posted Sat, Jan. 2, 2010 at 6:36 pm EST