January 29, 2012

Stomach Tubes to Feed Elderly Often Unnecessary, May Be Harmful

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Dr. Timothy Ihrig with his patient            and friend, the late Dyane Petri, in June 2010 at the Veterans             Administration Hospital in Palo Alto, Cal. Ihrig was doing a palliative care          fellowship at Stanford University Medical Center. Photo courtesy of Dr. Timothy Ihrig

Dr. Timothy Ihrig with his patient and friend, the late Dyane Petri, in June 2010 at the Veterans Administration Hospital in Palo Alto, Cal. Ihrig was doing a palliative care fellowship at Stanford University Medical Center. Photo courtesy of Dr. Timothy Ihrig

Check out more from the series:
Best Feed Tube Decisions Require Tough Choices

For physicians, this is routine and uncomplicated surgery. For the families of ailing seniors, it is yet another medical procedure fraught with uncertainty that arouses disturbing questions and fears about life and death, often accompanied by feelings of guilt and family turmoil.

Little controversy surrounds the use of percutaneous endoscopic gastronomy (PEG) tubes in patients with long-term nutritional needs but good prospects for recovery from whatever condition has interfered with their ability to eat.

PEG Tubes Used Appropriately Can Be Lifesaving
Often Futile Procedure Remains Common

No one can point to a single culprit or clear explanation for why the medical profession continues the controversial and routine practice of surgically implanting feeding tubes in stomachs of dying, elderly patients.

But a lot of people in healthcare industry are reaping the benefit. Like hospitals. And nursing homes. And the global medical technology giants.

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Feeding tubes surgically implanted into the stomach are coming under growing criticism in medical care for the elderly, even as their use among the frail, terminally ill and often demented patients has become commonplace.

The majority of these patients are dying from progressive neurological diseases like Alzheimer’s, but physicians continue recommending the surgery to people despite lack of solid medical evidence that patients will benefit. Moreover, experts say tube feeding in such situations may do more harm than good.

Dr. David Weissman

Photo Courtesy of David Weissman

Dr. David Weissman

“It’s not a benign procedure,” said Dr. David Weissman, a palliative care physician and professor emeritus at the Medical College of Wisconsin in Milwaukee.

It potentially has serious consequences on patients’ health and emotional states. Even if the surgery goes smoothly, as it typically does, it has risks, such as uncontrolled bleeding in the stomach, inflammation or infection and inhaling contents of the stomach into the lungs.

And the tubes, which protrude from their stomachs, often diminish patients’ quality of life, cause emotional distress and adversely affect their sense of dignity and humanity. For families of patients who have lost the ability to provide an informed consent, the decision to let a doctor insert the tube in their loved one often becomes a wrenchingly divisive issue.

“The insistence on such interventions approaches what I consider [going] against one of the tenets of medicine, and that is do no harm,” said Dr. Timothy Ihrig, a Des Moines physician specializing in palliative care. Palliative care is a branch of medicine focusing on relieving pain and suffering and improving the quality of life for people facing the pain, symptoms and stresses of serious illness.

Despite a decade of research casting doubt on the practice, critics say medical professionals order the tubes when not medically necessary as a matter of routine. They do it to appease distraught family members and to avoid in-depth conversations about dying loved ones, or as a way of hastening discharge of the patient from the hospital and reducing expenses. Dependence on PEGs is also wrapped up in the complex economics of healthcare and the fact that people live longer.


At issue is the PEG tube – standing for percutaneous endoscopic gastrostomy.

They first came into use in the 1980s to provide nutrition for children and young adults unable to eat. They introduced an important technological advance over intravenous nutrition or more difficult stomach surgeries. Costing around $3,000 to implant, the device is considered particularly useful for patients with certain kinds of cancers, digestive disorders and burns. PEG tubes have important and even life-saving uses among younger patients and others who can benefit.

Terri Schiavo before brain injury.

Undated family photo from UPI

Terri Schiavo before brain injury.

Questions about the proper use of feeding tubes gained national attention in the case of Terri Schiavo, a Florida woman who suffered severe brain damage on Feb. 25, 1990, that left her in a vegetative state at age 26.

Schiavo’s husband and her parents battled each other in the courts for her last seven years, until the husband’s wish to have the tube removed finally prevailed in 2005, but not before the dispute had roiled Congress and reached the White House.

Today, the controversy is not just about an individual case or those in vegetative state. But it touches on some similar emotional and cultural issues surrounding modern medical care. The focus is the widespread and routine adaptation of the PEG tube for patients in the nation’s burgeoning senior population despite many questions about the practice, especially when used in weak elderly patients, including some with advanced dementia. The elderly are now the main clientele for PEG tubes.

PEG tube insertion in the U.S. has more than tripled over the past two decades, an increase coinciding with the rise in the elderly population.

In 1988, around 60,000 PEG tubes were used on patients 65 years and older on Medicare. For the year 2004, the number reached nearly 150,000. And the October 2010 issue of the medical journal Nutrition in Clinical Practiceestimated that 188,000 PEG tubes had been placed in Medicare patients so far that year, a rate that was on pace to eventually quadruple the 1988 figure.

(Click to Enlarge) Gastrostomy tubes inserted in Iowa hospitals reporting to the Iowa Hospital Association./Illustration by the Iowa Hospital Association." credit="

In Iowa, PEG procedures also have been on the rise, but at a slower rate over the past dozen years. PEG placements rose from 1,032 in 1997 to a high of 1,365 in 2008, with a slight decrease in 2009-2010, according to the best available data from the Iowa Hospital Association. On average, patients aged 65 and over represented about 61 percent of those receiving the procedure, but a growing proportion are aged 45-64. Children and infants, for whom the technique was developed, are now a small minority of recipients.


Critics of routine PEG implantation in elderly patients are found among physicians, nurses, social workers, speech pathologists and others, and some fear that without concerted attention to the method’s drawbacks, the trend will pick up speed as the affected population grows. The most recent U.S. census counts 40.3 million Americans aged 65 and older as of April 2010, a rise of about 15 percent from 2000, while the nation’s population as a whole grew by 9.7 percent. The aging of post-World War II baby boomers will only accentuate this trajectory.

Weissman, the Wisconsin physician, outlines a typical scenario that he calls “the tube-feeding death spiral” related to routine use of PEGs for patients with chronic, debilitating neurological diseases:

  • A patient nearing the end of a fatal chronic illness is admitted to the hospital for an acute medical problem. 
  • Medical staff observe that the patient is swallowing with difficulty, losing weight, or inhaling food and drink.
  • A doctor orders a swallow study, leading to a recommendation that the patient receive “non-oral feeding” out of concern the person will choke or not eat enough.
  • The feeding tube provokes “agitation.” Sometimes the patient is transferred to a more secure care facility. If not, the patient’s distress dislodges the feeding tube.
  • The tube is reinserted, and the patient’s hands or chest are tied down.
  • The patient chokes on his or her own body fluids and develops pneumonia.
  • The patient gets antibiotics through an IV, and a sensor clipped to a fingertip, earlobe or toe monitors the amount of oxygen in the blood, a method called pulse oximetry.
  • The tube might fall out and be replaced several times before a family conference is finally convened to discuss what to do.
  • The patient dies.

“We see this all the time in the hospital,” Weissman said.

The American Gastroenterological Association recommends the PEG tube for feeding patients who cannot or will not eat and require more than a temporary remedy. The association also says patients who undergo the surgery must have functioning digestion and be able to tolerate the operation.

But people with Alzheimer’s or other neurological illnesses, even if they meet these qualifications, are not necessarily going to benefit from a PEG. There is no proof that feeding patients dying from neurological illnesses with prepared formulas pumped through stomach tubes enhances either length or quality of life.

As their symptoms worsen, such patients commonly lose their appetite or the motor skills required to eat. They also may have difficulty swallowing, putting them in danger of inhaling food or liquids into the lungs, known as aspiration, which can cause life-threatening pneumonia.


For those nearing life’s end, inserting a feeding tube doesn’t reverse the process of dying, said Dr. John Rachow, a University of Iowa Hospital and Clinics geriatrics specialist. The ability to eat is often the last function to go before patients with advanced dementia die; it is “the clinical marker of their terminal state,” as Rachow puts it. At this stage, a feeding tube becomes “a pointless intervention,” he said.

Or worse than pointless, according to Weissman, the Wisconsin doctor.

Confused elderly patients may be alarmed to find a tube protruding from their stomach, Weissman said; some have to be physically restrained so they won’t pull the tube out.

Dr. Timothy Ihrig with his patient and friend, the late Dyane Petri, in June 2010 at the Veterans Administration Hospital in Palo Alto, Cal. Ihrig was doing a palliative care fellowship at Stanford University Medical Center.

Photo courtesy of Dr. Timothy Ihrig

Dr. Timothy Ihrig with his patient and friend, the late Dyane Petri, in June 2010 at the Veterans Administration Hospital in Palo Alto, Cal. Ihrig was doing a palliative care fellowship at Stanford University Medical Center.

Furthermore, PEG tubes don’t always ward off the problems they are supposed to prevent – such as keeping patients with advanced dementia from getting aspiration pneumonia. “Putting in a feeding tube does nothing to prevent aspiration,” Weissman said.

This is because people who can’t swallow still may inhale their own saliva or gastric juices from the stomach into the lungs, which is no less dangerous than breathing in food and drink.

Des Moines physician Timothy Ihrig thinks unnecessary PEG tubes are not only unethical, but also wasteful. “I’ve seen times where tubes have been put in and the patient pulls them out, but it keeps going back in,” he said. “It’s not open heart surgery. But if someone is going to gain nothing from it, then why do it?”


At the University of Iowa’s hospital, the state’s largest hospital and only academic medical center, annual PEG insertions more than doubled between 2003 and 2008, going from 121 to 296. The number has fallen since the peak year of 2008, with 224 tubes placed in 2009 and 233 in 2010. The number of total discharges also increased over those eight years, but at a much lower rate.

Although Iowa still has one of the lowest rates of PEG tube insertions in the country – a 2009 Brown University study found the state had the fourth lowest rate nationwide –some doctors nevertheless are dismayed by what they are seeing.

Rachow, as attending physician for numerous nursing homes in southeast Iowa, said he’s witnessed an increase over the past decade in the number of patients coming to nursing homes with a PEG tube in place after short hospital stays, even when a long-term feeding device seems unwarranted. “The more it’s done, the more it just becomes the standard,” he said.

The American Gastroenterological Association says patients who are not eating normally should start getting nourishment within one to two weeks after admission to the hospital, and recommends the PEG for patients who need feedings by tube for more than 30 days.

(Click to enlarge) Growth of peg tube insertions in Iowa & at the University of Iowa Hospitals./Illustration from Iowa Hospital Association & UIHC" credit="

The University of Iowa Hospital and Clinics makes the decision faster: If a patient’s ability to eat has not improved within 48 to 72 hours, the healthcare team begins to consider strategies on how to feed the patient, according to Dr. Justin Smock, an internal medicine clinician.

“Nutrition is critically important for improvement in getting over illness,” he said.


In considering whether to place a PEG tube, the possibility that eating by mouth might lead to a patient’s death weighs heavily on the minds of physicians. Doctors may order a swallow test, overseen by a speech pathologist. Mild swallowing problems might call for simply a change in diet, while severe swallowing problems may result in a feeding tube, which requires a doctor’s order and the patient or family’s consent.

“Once we know the patient needs a PEG tube, the hospital is pretty good about getting them in,” said Molly Klokkenga, a social worker in the UI Hospital neurology unit. “If physical or occupational therapy says they need skilled [care] and they’re having difficulty swallowing, then we’ll just go ahead and do a PEG tube.”

Smock said swallow studies “almost always confirm what you know,” and geriatrician Rachow agreed. However, he cautioned against relying on swallow tests when abnormal swallowing may be a temporary condition apart from underlying chronic problems. “There’s a flaw in the logic that a swallowing test during acute illness really tells you what they had before they got sick,” he said.

Dr. John Rachow, UIHC physician & geriatrics specialist.

Photo by Jenelle Ploff at J Michel Photo, Coralville

Dr. John Rachow, UIHC physician & geriatrics specialist.

In Rachow’s view, the swallow test can become a means for physicians to justify insertion of a PEG tube in a context of intense anxiety. Patients and their families typically face great uncertainty about the kind of care that will follow a hospital stay, and by placing a PEG, doctors help relieve their anxieties, he said.

Rachow wishes more physicians would call him before their patients go to nursing homes, but most do not: He said he hears from doctors in about one out of five cases. Medical residents who often handle discharges are especially busy, he noted. “A lot of pressure is on them to move the patient through. The young doctor in internship, buried in work, just can’t see that there is another world of care going on outside the hospital.

Gabe Gao is a December 2011 graduate of the University of Iowa’s Master of Arts in journalism program and is an emergency medicine resident in Providence, Rhode Island, at Rhode Island Hospital-Brown University after graduating from medical school at Northwestern University.


37 thoughts on “Stomach Tubes to Feed Elderly Often Unnecessary, May Be Harmful

  1. Pingback: Bigger Conversation at End-Stages: Artificial Nutrition After Transition to Catabolic State

  2. So in other words, you would rather they starve to death by not having a feeding tube? As if somehow that is a better option? It think not.

    Whether it reverses the life outcome has nothing to do with it. Its called prolonging life, where they would live longer with a feeding tube than they would choking to death, or die from lack of nutrition.

    Its doctors like this who are the very reason my dad may die sooner than he should be. He is already very close to it. Anyone who says otherwise has never had a family member go through this. And it makes me angry. I’m tired of the clueless doctors who have a datestamp on patients and just give up.

    • My mother had a spell where she couldn’t talk for about 3 mins and bc she’d had previous strokes I took her to the ER. By the time she was seen she was back to normal, of course they admitted her anyway and didn’t allow her to eat for a cpl days. Then did a swallow test which she passed but still didn’t feed her because she needed more tests. Then they put a feeding tube in her nose. By the time they tried to feed her she didn’t want to eat after becoming weak and frail not to mention her throat being sore from the feeding tube. She was being moved to a nursing home for PT and a nurse called me about a PEG. I said she ate fine before that visit and she promised it would only be a couple of weeks and she could still eat orally since she passed her swallow test. The nursing home wouldn’t feed her until I raised cain and now that she’s been home for months they still won’t remove it in case she needs it later. Never let anyone put a PEG in unless you want it forever

    • I so disagree with you only because we are experiencing this now with my husband’s dad. He is 89 and was near death over 3 weeks ago. Infection in a heart valve and blood causing 2 small strokes.
      Because he cannot swallow they inserted the tube in his stomach.
      As we have found many doctors will tell you that your quality of life entails 3 things. Walking talking and eating.
      My father-in-law would hate this.
      I know it has now pushed my husband and I into personal talks about ourselves.
      I told him flat out that if there were no chance I would walk or communicate or be able to eat again I would never want to lay there like that and putting my family through such pain. He agreed, neither of us want feeding tubes unless it’s a fix to a medical issue we are assured we will overcome. Probably not at any 89 years of age either.
      Until people go through these hard times with family they will never know.

  3. Our family is in the middle of this discussion which drew me to this article. End stage Parkinson’s. It can take all day to try to get the myriad of medications down. Sometimes the food seems to go down slowly but surely but the next day the same bite will stay in the mouth for an hour while she struggles to chew and swallow. Her brain is telling her that the chewing was successful and the swallowing is working but nothing is actually going on. She is getting thinner and more frail. Although mentation has declined she still knows everyone and has times that are good. She cannot even swallow liquids with any regularity and I suspect she is chronically and severely dehydrated contributing to constipation and her frequent UTIs.
    I personally believe she is approaching a tipping point where the cascade of events in body shut down will begin. Not everyone is in agreement with the tube although the Dr. is aware of her weight loss and of the issues and is strongly considering asking a GI Dr. to place the tube. (or through a Radiologist.) Reading this article has caused a pause but this is a difficult decision. I personally feel that her quality of life, although attenuated, is still worth living. Much of the difficulty she has is the utter frustration with just trying to get things down her throat almost the whole day. I don’t know for sure that placing the tube would change all of that for the better but it seems that it would be worth the try.

  4. Pingback: Stomach Tubes to Feed Elderly Often Unnecessary, May Be Harmful | Iowa Center for Public Affairs Journalism | Shantinel's Blog

  5. My father in law, a survivor of the holocaust, is 99 years old and has had a feeding tube for the las two and a half years. He had this operation done in Texas, since his doctors in Illinois had decided he lived long enough and it was not worth spending any more money in his medical care. It would have been ironic and cruel to starve a person who survived starvation and now at the hands of his own family and physicians. I am happy we took the decision to do what needed to be done and let God be in charge of when his life should end. He has had very happy moments, we have learned a lot from him being close as we are now to him. That he might die eventually of a complication, could be, but it will not be us taking the decision that he lived enough.

    • Thank you Maria. I am at my 90 year old mother’s hospital bedside after she had a PEG tube inserted 2 weeks ago. She is struggling a lot and having read this article, I was doubting our decision. However, your story has given hope that it was the right one.

    • Thank you Miss Gelman. I am facing the same decision with my mother right now. I have heard the doctors, read the doctors opinions and read family accounts. I am orthodox and your experience has resonated my spirit. Omein. HaShem is in control. Todah Rabah.

  6. I was very disappointed that Mr. Gao wrote this article without actually speaking to a speech pathologist. He mentioned that they are ‘overseen’ by speech pathologist, then goes on to quote a geriatrician stating swallow studies “almost always confirm what you know.” This article would have much more substance had you discussed the complexities of swallow studies across the continuum with the folks that actually complete them. Medical speech pathologists are quite committed to helping people eat as long as possible. The quote, “There’s a flaw in the logic that a swallowing test during acute illness really tells you what they had before they got sick,” is ignorantly assuming swallowing tests are not weighing acute changes with chronic and/or progressive conditions that may be present. I am glad Mr. Gao addressed the overuse of PEG placements in the elderly, but more sophistication in dealing with the issue of death and dying would make for a more helpful discussion on the topic. There certainly is ‘intense anxiety’ when it comes to a loved one reaching the end of their life. But placing a PEG is not about acute care hospitals attempting to relieve “uncertainty about the kind of care that will follow a hospital stay.” That is just plain missing the gist of what is happening. It is about the mistaken belief that people will ‘starve to death” without one. A placement of a PEG tube needs careful consideration for each individual situation.

      • My father is currently having a NG tube for about 4 wks but the Doctor keep asking me to have a PEG for my fahter. They told me that my Father has silent aspiration. Therefore he can not eat or drink by mouth. He needs Speech therapy. now my father is waiting for schedule to have a PEG placement. But I am very worry about complication, because he is 95 years old. So what is your recommendation.

        • Sorry, but we cannot make a recommendation on medical care. Talk with your doctors about options. The expectation behind this story is that you are informed as you make a decision that only your family can make.

  7. This is bs. They make it sound so dramatic. My mom is happy to have her peg. She doesn’t want to die and is able to be happy to continue to live with husband in her home. Home care is being paid for by life long savings. They are happy

    • Hi Kim,
      I am happy to hear about your mom. My father just had the PEG tube last Tue. Sep. 1 2015, but he complaints a lot. I just found out his stomach has a lot of residual every time the RN checks it. So I m very curious about your Mom nutrition and feeding. Also how about pain medication, who prescibes. Since my father got back from the Hospital, he is coughing a lot and everytime he coughs he feels pain and uncomfort. so please help me how and what to do.



    • I am in the same situation. My mom has a peg. She eats nectar thick and gets two tube feedings per day. She wants to live. Her life is worthwhile.

  8. My 89 years old Dad has Alzheimer’s, terminal stomach cancer, and a host of other illnesses. This last hospital visit, one of many within the last 3 months, have resulted in a PEG insertion for the purpose of nutritional needs/supplements. I hope this resolves the struggles of eating and aspirational pneumonia which is happening quite often. My dad is precious and loves life. His current medical condition is yet another step in ensuring he is well cared for. When God wants him, we are at peace.

  9. My Dad is 90 years old. He had a stroke in March. He had the G tube inserted. It is now end of June. Was admitted to a full care nursing home two days ago, and has his own private room. My dad is eating complete meals while the tube is still inside. Nursing home made an error first day the first day there next morning he had a breakfast, and he now wants Real Foods to eat. My sister has been bringing/sneaking in his foods to eat. My dad is head strong and competent, wants what he wants. His G tube is still in stomach. I live far away from him. I rely on my two sisters there with him. They are thinking food is good for him now.
    Now…..what could happen?

    • My mom eats food and gets tube feedings. You can have a tube in and eat regular food. It is often left in so if needed again it doesn’t have to be put in again.

  10. Hi,

    My father (71) will be treated for squamous cell carcinoma in neck, which is in an early stage. Doctor has recommended for PEG directly on stomach. Am a bit sceptical that this might bring new complications to him. Hence would like to know if peg is really required before his treatment starts?

  11. I really can’t stand these pompous, uneducated doctors opinions. Boy, I sure hope they never have to deal with any of life’s real problems as they appear to live in bubbles and assume everyone should agree with their incompetent views. Oh well, they will get theirs. In the meantime, the rest of the educated people need to stick together to override their uneducated views.

  12. My father recently passed away with a PEG tube. But the months leading up to his death were typical from the standpoint of the article’s description. He had a slight stroke and had trouble swallowing which had lead to bouts of aspiration pneumonia, was 95 years old on hospice for heart failure, and had multiple other health problems. But, contrary to the article, the right thing to do was to put a PEG tube in. After reading all the comments, it is obvious that the decision to insert a feeding tube is not something that should be decided by doctors. The family of the elderly patient knows him or her better than anyone and should be the final decision maker. In my father’s case I fought “tooth and nail” for him to get that tube. I fought against three different doctor’s who were all telling me that he was too old to have it done, that his death was coming soon and I should let him go, and that he would possibly die in the surgery. I felt the life he would lead, no matter how short or long, would have been very uncomfortable without the tube. In hindsight, he had a very comfortable last month without starvation, dehydration, and he was able to get his medications. In the end he did in fact die from aspiration induced pneumonia, just as the article implies. But, the logic in the article is simply wrong. The possibility of comfort was more important than the risk of death or the expenditures that were incurred as a result of the insertion of the PEG tube.

  13. My close buddy,golfing partner and retired internist Dr. fell,hit his head,was taken to Hosp. 1month later because of persistent headaches where they drilled into brain to relieve pressure caused by extra blood on brain.He tries to pull out feeding tubes in his throat so they have to sedate him and now want to send him to re-hab and insert a PEG.He is 81,VERY good shape(like a 60Yr. old)He comes in and out of coma,but they have him sedated so I’m NOT certain he would talk and swallow better W.O. the sedation.He has NOT passed their swallow test————my GUT FEELING says “my friend would have been much better without inserting the feeding tube down his throat after they drilled in brain to relieve the pressure”.His wife and children DON’T know what to do and I think the hospital wants to send him out of the hospital to a RE-HAB center to get rid of the Hospital costs.My gut says take him off of sedation, pull out the tubes that are killing his throat and have family and nurses sit him up and force feed like a baby with “baby food and soups” and intravenously thru his arm” and see if he improves slowly. HE IS TOUGH!–Anyone with similar experience, please reply to my e-address————He’s MY CLOSE BUDDY!!!

  14. My mother (age 84) had a series of strokes that left her with impaired swallowing…. enter the PEG tube – after the neurologist frightened us instead of having a conversation. This was just a few months after my husband’s passing with cancer and my father having a heart attack. So it was an easy task to use threatening language (the death words) with my family. My mother has hated the feeding tube from the start. She did seem to improve slightly but then started down a slippery slope to where she can’t talk or swallow at all now. She’s had several addition strokes and her health continues to rapidly decline. No quality of life left for her. I, being the only caregiver since my father eventually passed away during this ordeal, have managed to keep her at home – mostly isolated except for those I’ve hired or my 3-daily visits to feed her.

    She has decided that she has had enough of this type living and wants nature (not intervention) to dictate her parting. She has elected to have the tube removed – she wants to control her death. Her doctor has had trouble understanding the type of palliative care we are seeking – one of comfort and without pain.

    After seeing what doctors and hospitals can do to a terminal cancer patient, a 90 year man whose heart is failing, and a frail woman who has no hope of getting better and looks forward only to more of hopelessness the next day……. my advice would be….stay away from doctors and hospitals as much as possible…and don’t believe anyone in the medical field.

  15. My mother (88) has had Alzheimer’s for almost 19 years and is in her last stage. She has been in a nursing home for 6 years. I was just told that doctor/nurse want to place a G-Tube in her because she is no longer swallowing and losing weight. She is developing pressure sores. I was told it would only be a temporary solution.

    My questions is, how can it be temporary if she can no longer swallow. Sure she would probably gain some weight back, but if she no longer swallows, she will be back to the G-Tube. I have told them no G-Tube and my God you think I just ordered her death by starvation. My personal doctor has told me that this is the body saying no more. These decisions are very hard, but going with No G-Tube

  16. My mother was living at home and then had to be admitted to a hospital. She ate fine at the hospital, moved to a skilled nursing facility, now they want to insert a feeding tube since she has refused to eat very much. Either me or her sister go there daily and bring her food from home to eat. She gets mad and doesn’t want to eat anything but a few bites and a few sips of her soda. Our family is in turmoil and we don’t know what to do. This article did me no good but reading the responses made me feel better. Thank you to all who wrote in.

  17. My 94 year old mother suddenly had a blockage in the esophagus and it was removed. She has continued to have trouble swallowing. We have went thru the swallow tests. She is on oxygen and beginnings of kidney failure but otherwise very sharp and competent. Dr’s are considering a PEG tube for feedings. I would think that since she is not terminal, this would give her a quality of life rather than sending her home to slowly starve to death. Will have discussion with doctor and social workers tomorrow.

    • My mom has an unusual and rare condition which leads to dementia (among a bunch of other neurological) symptoms, but does respond somewhat to immunotherapy (and for some people – even remission.). My mom knows everyone- but unfortunaltey cannot walk or talk. I go to see her every day, and we sing, I read to her and hse seems content. Her kidnesy, heart, overall blod work is really good, even better than mine :-).
      She finally could not swallow. She tried her best to eat but it wouldnt happen. We were given advice by a doctor who did not know her to take heer home- dont feed her and a prescription for morphine. My family went against that advice, and got the PEG 5 months ago. She ahs gained weight, her skin, and hiar look wonderful, her eyes are brighter and she doesnt sleep so much and enjoys the company of people. No one but a family can decide what life is worth living. It was a horribel decision process (being made to feel that we would be toruring my mom if we got it). My mom is 84, I know hat she will not be around forever, but for whatever time we have left with her, I am so happy we made this decision and that my mom is comfortable, hydrated and nourished. Go with your heart- it’s the best barometer of what to do.

  18. My mom is 91. Mentally sharp, very strong constitution, and up until August of 2015 had been living on her own and still driving between family members across 5 states. She was diagnosed with Bladder Cancer in July 2015. She had her first Cystoscopy in September. Unbeknownst to us, her bladder was perforated during the scope. Her Dr. said he needed to do a second scope, and did so in October. He sent her home, and within a couple of hours she was in so much pain she was shaking, and couldn’t speak. We took her to the Emergency room. She showed all the signs of infection, but the infection specialist insisted negative culture , no infection.We had her transferred to a large teaching hospital in Philadelphia, hoping the source of her decline could be found.Again the infection specialist insisted she had no infection and all of her x rays and scans were negative for injury. it wasn’t until we had taken my mom to a 3rd hospital in Florida, and had all of her test results and reports reviewed that the fact she had suffered a perforation, and that one of her scans clearly showed an abscess. Antibiotics were resumed. She has been battling one infection after another ever since. She was perforated by a urine catheter several weeks ago,and developed a serious Fungal infection. The hospital suggested she be moved to a larger facility once again. On to hospital #4. We are mentally and physically exhausted. But in spite of the mind boggling # of medical errors and subpar care, my mom has fought her way back time and time again. The infections have affected her appetite, and ability take in enough calories. A temporary feeding tube was inserted. She began having trouble swallowing. It was discovered she had a yeast infection in her mouth. While applying oral medication, the nurse discovered to her horror the guide wire had been left in the feeding tube, which was placed 10 days earlier. They pulled the tube, but because of irritation could not put in another. A peg is our only option to give her enough calories . Her urinary tract is infected from the catheter , and she is on strong antibiotics, and anti fungal meds, as well as morphine for pain. Yet, before her medication each day while her mind is clear, she tells us she very much wants to live and try and recover. She has agreed to have a peg put in, however her arrogant doctor is refusing to do, and honor her wishes. Every day has become a battle with her doctors and the hospital to get them to do anything to help her. I am quite sure had all of these instances of botched care not occurred, by now she would have had another resection for the Cancer and be back at home enjoying her remaining time with us, instead, we find ourselves in the twilight zone. My Mother lingers, in pain and yet no one except a few nurses show any sense of urgency, or make any effort to do anything medically to help her. Every scan, and or MRI, blood analysis bone scan etc. has been negative for Cancer Spread. Her latest complication has been a bloody discharge which began almost 10 days ago. Not one doctor has examined her, attempted to determine its source, or suggested a remedy. The go to explanation at each hospital, and doctor has been she is 91, and has Cancer, without any definite evidence to back it up……I have lost all respect for the medical profession, and hospital care. We have no problem accepting my mother’s death from cancer, we know she can’t live forever, but to know she will die of malnourishment and conditions that could have and should have been addressed and were not is a disgrace…….

  19. My father has been battling with Alzheimer’s for over 10 years. He got it at 60, and progressively his basic functions deteriorated. In 2009 he got a PEG tube placed b/c he couldn’t swallow, and we were always in the hospital due to aspiration pneumonia. I did my research and the doctors agreed he would definitely better his quality of life with a PEG tube.
    Dad is a warrior, and with this disease you’re always dodging bullets, however he’s doing amazingly well, we’ve never had any problems with his enteral feeding, and if it weren’t for him being fed this way he would have died of malnutrition, not alzheimers. Any who all I want to say, is to the caregivers, you need to make a lot of tough choices when a loved one becomes ill, but do your reasearch, and always measure the pros and cons. Don’t just go by what the Dr’s tell you, b/c according to some, I should have already buried my dad years ago. If they have the fight left in them, don’t let them go because of silly nonsense. Fight with them, extend their quality of life if possible, and when the man upstairs says it’s time to call it quits, then you do what needs to be done so they go in peace.
    I always think it’s been a very long journey for us, but in the end there is nothing better then laying your head at night knowing you did all you could do!!
    Good luck to all.

  20. My husband is 51 and was diagnosed with ALS April 15, 2015 after a year of searching and seeing doc after doc to see what was really wrong. Started tremors in left hand and weakness and then speech slurred and then swallowing problems began. He had PEG Tube surgically placed Dec 2015 due to the inability to swallow thin liquids ie water and meds. The surgery was very hard on him. Was supposed to be outpatient in and out in a day and he was in the hospital for 6 days with severe pain. Lost 15 lbs during that whole process and he only weighed 144 lbs to begin with. We are now handling feedings fine and he has gained a few lbs back. He can eat thick liquids a few times a day, but the tube has helped him get more caloric intake which is helping him. The stopper on the end of the tube is needing to be replaced and we thought we could just order one and replace, but the doc says we have to come to the hospital to get it done. Tried to get the doc office to tell us brand name and description size etc but they don’t want us to do it ourselves for fear we will mess up something. I see sites that people do it themselves but its better safe than sorry, Husband doesn’t want to go back. Any thoughts would be appreciated or advice.

  21. Where there is life there is hope. Do what your heart tells you.My 86 you mother suddenly has trouble swallowing she has mild dementia. We know the tube will not make her whole again, but we know she has some life in her. She will be with me surrounded by people who love her will know when it is time “to let go” But now is not that time. Prayers to all of you going thru the same thing. Thanks for sharing

  22. considering some long term nursing facilities only bathe patients twice a week it would seem to me a peg inserted in an elderly dementia patient would be exposed to infection which is why being asked to agree to the procedure on a 88 year old female suffering with dementia I chose not to, she always reminded me she did not want to prolong her life if there was no quality physically and or mentally, unfortunately she has neither…it’s a difficult decision but one I pray someone will make for me…

  23. Thank you everyone for your comments. I am an only child who is smack in the middle of having to make this difficult decision. This site is the first reading I’ve done on the subject but my gut drove me to it. I do feel better knowing that this is a decision worth pondering and there really is no right or wrong answer. My mother and I are so very, very close and I can’t imagine life without her, but I don’t want her to suffer either. I also can’t image her starving to death. I personally believe she wants to eat and will eat. She does suffer from dementia but its not so bad she doesn’t recognize me or her grandson. She just seems to tired. When she’s awake she’s alert and will eat whether she’s or tries to do it herself. So difficult, so heart breaking #feelingalone

    • It’s so difficult Laura, isn’t it? My dad has end stage dementia and is refusing food and so a decision about a feeding tube is imminent. My mom is the one that has the ultimate say and I am so torn at what to do as she is in a bit of denial about the stage my dad is in. He has no quality of life that I can see, barely recognizes family, wheelchair bound and angry/agitated all the time.

      If we go with a tube, yes it will extend his life but it’s impossible to think think it is what he would want. Of course if we don’t, then it is a death sentence, no way around that.

      We’ve decided to bring in hospice before it gets to that point to have a support structure in place both to help my dad with pain/anxiety and my mom emotionally. I highly suggest you consider hospice as they offer tons of help and it doesn’t mean you have to deny your loved one a feeding tube. Plus Medicare pays 100% if a doctor certifies that they think they are at the end stage.

      God bless you all and best of luck.

  24. My mom is only 60 and doesn’t have dementia but has severe digestive issues and can’t eat food normally. It seems cruel to let a fairly young, completely conscious person starve to death. The article doesn’t spend enough time or consideration on these cases and frankly makes me a bit upset.

  25. I agree that you should perhaps spend more contemplation on the decision of using the PEG on the elderly my mom recently passed away , she was 93 years old she was admitted into a nursing home less than a month before she passed. I was contacted (although I had several siblings who visited her every day) that she would no longer eat, drink or take her medications and we were asked if we wanted to put her on the feeding tube or have her go into hospice my mother at 93 was in pretty good health she had early stages of dementia but she was alert and very aware of her surroundings and her family. She had had problems swallowing in the past but at home we always were able to get her to take her medication daily sometimes she would eat and sometimes she wouldn’t eat. she had a Pacer and she was on a blood-thinning medication but otherwise all of her other vitals were healthy and normal. We decided to go with the feeding tube, several days later she passed away. I suppose we will never know if the decision we made to have a feeding tube placed in her stomache was a good or bad decision since she died or was it God’s will. Although our mother’s health was good to some degree her quality of life had severely diminished she suffered chronic arthritis pain in her shoulder constantly needed pain medication daily, she had a chronic spitting habit so she had to have a spit cup at all times, she could no longer stand or walk without help and require 24 hours of care which is why we decided to place her in a nursing home. She was doing well at home but I felt she was also suffering, through signs of agitation and frustration, she didn’t do that well in the nursing home and whether she would have still be alive today had we let her stay in her home we will never know. so yes I do agree with a lot of the reviews that I’ve read making a decision for the elderly is very complex and can be very stressful. finally I think that haf I read reviews like this prior to making the decision to use the feeding tube on my mother I would not have done so. while it works for some elderly I don’t think it worked for her.
    Thank You!!!!

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