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.
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.
Every Thursday you can receive a newsletter with a roundup or our latest investigations and stories.
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.
“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.
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 Practice estimated 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.
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:
“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.
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.
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.
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.
Republish This Story
Republish our articles for free, online or in print.
Close window XInvestigate Midwest Reporting Republishing Guidelines
Unless otherwise noted, you are allowed to republish our stories, original photos and graphics for free under the following conditions:
by Gabe Gao, Investigate Midwest
January 29, 2012
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.
guamjeff says: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.
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.
Marian Creighton says: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.
Maryslp says: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.
kim says: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
Ana Rivera says: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.
Nancy says: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 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
Nitin says: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?
So after all of Qs & As I still confuse that should they have a PEG placement or not?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.
Michele Skorstad says: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.
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.
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.
Leslie Ellis says: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.
Tammy says: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. Thanks, Tammy
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.
kj says: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.
PHIL STEINBERG says: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.
Diana Little says: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.
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
Kelly Sullivan says: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.
Moshe Messer says: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.
Joyce says: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.
Diane Merz says: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…….
Chris says: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.
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.
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.
Joan e says: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
Chris Collins says: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…
Laura A. Mason says: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
Anon01 says: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.
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.
VW says: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.
My mothers dr absolutely wants her to eat as much as she would like- it is important to do so for many reasons and may just help him to discontinue need for tube
Linda says:My father had swallowing problems before, and then a large tumor in the back of his throat that was treated with radiation and reduced down to nothing. But he cannot swallow, confirmed by a swallow test, and speech therapy would not improve it enough in his case; he was aspirating into his lungs. We had a g-tube placed about 5 months ago – it is not the ideal thing that we and he wants, but he has to have nutrition, plain and simple. He has been a real trooper but is missing food, like we all would. But he knows this is the only alternative. He does his own feedings, now with a home companion overseeing and helping. It really was not all that dramatic a decision once we knew it had to be done.
Greg says:I had to call the aps for help with my mother. Her husband my stepfather was neglecting her. She was hooked on pain pills badly and stopped eating. The aps put her in a nursing home and everything was going fine for the first month. She had gone from 80 pounds to 100 pounds eating well and her medicine seem to be under control. Then all of a sudden I started prescribing antipsychotic drugs such as a Zyprexa Trileptal Depakote and trazodone Kama also Klonopin lorazepam Ambien and the other medicine. She started falling down the berry next day after starting the Trazodone and Depakote. Now she has fell down at least a dozen times in the nursing home and has a broken hip broken arm broken shoulder and a shattered elbow Beyond repair. Now they say she has dementia which she did not have before going to the nursing home. She has been to the hospital with numerous infections and clothing sepsis and thrush. Now she has trouble swallowing and that after a swallow test they have inserted a peg tube. I think this is very cruel on top of everything else. She is in constant agony hollering all the time for help and now they have put this to bed or stomach to prolong her Agony even more. I guess there are good times and bad times for the peg tube butt I really think this is cruel and inhumane to prolong her life and I can’t do anything about it.
Anita says:My dad I law has Parkinson’s plus and was taken into hospital with aspirated pneumonia after attempts to keep feeding tube up through his nose they decided to put in a peg they now say he’s medically fit his chest rattles awfull and he is weak my mum in law had a stroke but insist on him coming home personally it’s going to be hard work what do we expect now after the peg
Jane says:PLEASE!! Read the article fully… this is intended for people who do not have any quality of life, but a tube would simply be keeping them alive in a vegetative state, or a helpless bed-bound state, or in some cases, severe dementia where someone has to be constantly sedated. Right now we have a dementia patient whose hand is restrained to keep her from pulling out her tube. She’s been hospitalized with sepsis, aspiration pneumonia, has a history of COPD as well as seizure. She’s bed bound and has absolutely zero quality of life. Would you want to keep living like this? I don’t think the intent of this article was meant for people who still have quality of life, or has a chance at improvement. It is geared toward those who are only simply surviving with no chance of getting better.
Cadine says:My father-in-law is in the hospital currently and we are battling with the decision to have the Peg inserted. My husband has already made the decision but is has been a hard one though he discussed it with his dad and he’s ok with it… we are riddled with guilt and we’re still wondering if it’s the best decision. He’s gonna be 80 yrs old in another week. Just eating and drinking lately feels horrible knowing he can’t. The main thing we did with him before all this was go out to have meals now we can’t do that… I just hope that we have made the right decision and God will lend him to us for longer. He had only gone in for a water infection and the nurses realised that he had difficulty swallowing… after doing all the necessary test they realised that the tube which directs food to his stomach is twisted as a result of previous strokes and that if he eats there’s a risk of him having aspirational pneumonia if food gets in his lungs which can kill him. He has now caught an infection while in the hospital and is very weak from not eating… but we are trusing and hoping he will make it. Your experience has made us hopeful and a bit more relaxed with the decision. Thank u.
Danyael says:I am 39, youngest of 3 other siblings. Our mom, 64, has had a series of strokes, with the last (known) being in May 2016 and that was a brain stem stroke. She sat in a hospital in SC for 5+ months while they did NOTHING for her. Her ‘husband’ (our step-dad) did NOTHING for her. (that is a WHOLE DIFFERENT article).
My sister fought for months and brought her up here to Ohio. My mom had a feeding tube inserted in the Carolinas. Mom got here late September, after 4 days in a nursing home, she developed septic pneumonia (from the feeding tube backup) and had a 102 fever (due to neglect… mom cannot eat/drink, cannot move). After about 1.5 weeks in an ICU, she was discharged and we placed her into a different ‘care’ facility. About 2 weeks went by, pneumonia came back, she was being neglected (and yes, me/sister raised holy hell EVERY DAY or else she probably would have been dead within days) and aspiration pneumonia came back. Nursing staff, even the pretend nurse practitioner all parroted, “there isn’t much we can do….”.
We yanked her out of there and put her back into a different hospital. This is going into a vicious cycle that NOBODY deserves… and it is mainly due to neglect and lack of care in these facilities for acute-care patients. It seems NOBODY really A) cares, B) knows what to do. Most nursing home/care facilities are all minimally staffed … example, a hospital’s nurse to patient ratio would be 5-6 patients for 1 nurse…. nursing home, average of 12 patients for 1 nurse…. and these nurses are usually fresh off of the bus. Any ‘non’ nursing home nurse will tell you that right after graduating, they are heavily solicited by nursing homes to come work for them. The smart, caring ones, decline and choose to go get real experience working with/under well experienced nurses.
The lazy/eager ones, accept and then are entrusted to our loved ones with no real-world experience. Medical staff will tell you (if they’re honest), the only REAL thing they remember from medical school is cramming for finals. So, back to my poor mom. She is now in hospice. We tried the rehabilitative route. Physical therapy did get some of her limbs working but not enough to even do anything. Our story is ever so common… the nursing home to hospital, back to nursing home to hospital cycle IS VERY REAL!
We refuse to let this happen. Our mom, thought she is dying, is actually at peace for the moment. She is able to breathe clearly again, no more IV’s, no more needles, no more prodding. She is comfortable. Most importantly, she believes in Jesus Christ and she accepted Him at a young age. She knows He died for her sins (and mine, and yours) and rose and is now seated at the right hand of the Father. He is coming back to rapture His church (just before the Great Tribulation begins).
My mom is saved, I am saved, are you saved? Have you accepted Christ as your savior? Do you admit you’re a sinner? Ask Him for forgiveness, ask Him to come into your heart, draw you closer to Him. He is the only way into Heaven. Your works will not get you into Heaven.
Feeding a patient through tube inserted through the nose is a decision to be made considering the situation of each patient. If the patient is terminally ill and has no hope of restoration , then it is better not to trouble them with tube feeding. But here an emotional issue comes up, close relations wanting to keep patient alive somehow. The decision should be left to them, though rarely they can put themselves in the position of the patient and think.For patients who have swallowing difficulty , but are otherwise recovering from illness, inserting tube is a positive thing as it sustains the food intake and helps to bounce back to normalcy.Failing to do may result patient being undernourished and weak to fight back infection.
My Mom , I am feeding through the tube since last one month.
My brother is 62 And had a servire stroke and can’t talk and failed the swalling test and they said he might have to get a feeding tube I’m don’t know what to do when he gets out of hospital he won’t be able to be on his own
huldah1776 says:Be aware that your brother is young and the brain has amazing plasticity. My cousin also had a severe stroke and has recovered to half better, lets say. Find out exactly what parts of brain were damaged and get advice for those areas. Keep up with what is new and coming up. Your brother may also learn to speak again through singing, depends again on healing and damage. THERAPY is crucial. Read everything you can on it.
I wish my 96 year old mother had been offered this, she had no disease , it was just hard to get enough nutrients in her to prevent her from losing weight, Not one person offered this.
Absolutely have a feeding tube put it, many people do just fine on them. Mel Unger says:My mother is 78, 5’4″ and has gone for 135 to 85 lbs. Yesterday a nurse and I talked to my mom – there are only two things that can happen now: hospice and prepare for the end or a feeding tube. I feel like a bully! A year ago – she said no feeding tubes, yesterday she agreed to have the tube. I am praying that … it will make her better – but she will not recover from Parkinson’s, she can’t walk or talk and eating is just not happening! I am not sure we are making the right choice…
Pauline says:I am so sorry to hear about all your poor mum has gone through. I really hope they honour her wishes and insert the Peg feeding tube. It is also so hard on you.
hunclewhitey@aol.com my wife is sick and not eating through the mouth we give her 4 cans a boost a day and mostof that is going through her she is staying 78 lbs 4 the last 6 weeks what are we looking at here is she going to make it hrough this or not please help me
my wife mmmm70 years old been sick off and on now Diego Burgos says:Please prove to us that the doctors in Illinois decided your father in law had lived long enough and that it was not worth spending any more money on his medical care. Did they ever say such a thing? Where is it documented? The doctors in Illinois thought the risks of placing a feeding tube outweighed the benefits. In this particular case, they were wrong. Generally, doctors will do anything to keep a person alive, even if it robs the patient of their dignity or ability to ever care for themselves again. More procedures means more money for doctors.
Vick Tsaccounis says:My father was left to die of thirst and starvation in hospital because his brain was not sending the message to swallow when food was in his mouth. However, he could swallow as an automatic reflex. This swallowing problem happened after his seventh stroke. The doctor said she couldn’t do anything for him after seeing the brain scan and we should let him die peacefully, with the aid of medication like morphine. He had a strong heart, he lasted 10 days after they disconnected the drip. I asked the doctor to leave the drip in for just seven days at a low setting to see if his condition would improve. She said, NO and that his body could no longer handle the drip, which was a lie. All the hospital team kept insisting to give him drugs to help him die. I felt helpless, I expected hospitals to save peoples lives not help people die. He could still hear us well but couldn’t see and on his right side, he lost use of his arm and leg, so he was bed bound. Before this latest stroke, my mother and I looked after him at home for 18 months. After other strokes, he always eventually improved slightly, but this time he was not given a chance. I also felt, I was lied to in hospital because as soon as the doctor saw the brain scan she said his body will start shutting down. I don’t think this was an accurate assessment. The truth is, his body was shutting down when he became dehydrated and starved of nutrition. He was only 75 years old. This seems like common practice in hospitals. I hope I don’t have to go to hospital as an elderly patient. I would just rather die at home. Also, during all these strokes when my mother immediately called the ambulance, I don’t understand why he was not given blood thinning medication to prevent brain damage in the first couple of hours. By the time all the tests are done in the hospital, it is too late and the brain damage has occurred. All of my fathers strokes related to blood clotting, not internal bleeding.
Carolyn Brwon says:Friend of family is in a facility and the family was told that due to their family member not taking in enough liquids and having to be taken to ER when sodium level is 150 and dehydration, Janeway tube should be placed in their family member’s stomach. The family was told that their family will refuse to eat or drink at time and at times would eat and drink well. The facility that this person in does not do IV fluids. When this person is sent to ER, she get fluids through IV and sent back to facility. The family has been told that this person has to be prick for blood to test her levels a-lot, is on puree and nutritional supplements. Family doesn’t feel that putting tube in their family member is the answer, but facility is putting a lot of pressure on the family to do it. The family was told that family member could die due to to much sodium in the body, although she is ranging in the 148-150 level and the facility wants the levels to be between 140-145. This person has been at this facility for 14 years.
Carla says:What to do- Dad, 96, will to live, but unable to eat or drink. Admitted to hosp due to ulcer on sacrum which Drs say due to malnutrition will not heal. Additionally he does have dementia. They did not discuss feeding tube, or I did not want to prolong with invasives, but also did not understand due to having no discussion. However, in reading I am wondering if this could help a man that has a fight to live, and does not want to leave us. Now I feel that I am causing his death due to malnutrition. I am in so much emotional pain I cannot sleep. Any comments? I am concerned that I let this go so long, he’s to weak to even consider this. Heartbroken!
Lucille Urby says:My mother has Parkinson’s disease is unable to swallow..She has been out on a feeding tube n is doing much better except she still want gain any weight..All the doctor can thinking is to turn up the speed on feeding tube machine..Yes she is is getting nutrients to her stomach bit it’s not enough she is still losing a lot of weight n still.complains of being hungry..So confused ..Any advise.
Daly says:90 year old that was still active and healthy 2 months ago caregiving driving etc got the flu and intestinal blockage. Intestinal stent put in place for the blockage. After dehydration from the blockage failed swallow test PEG tube put in.
Confused as no dementia all blood work and 2nd swallow test passed, but he is still refusing to get up and walk or eat while at rehab center.
Will be going home but I’m scared he won’t improve any suggestions to try.
Amen, I have a mother whose is 101 and in a nursing home and I have to make the decision if I want to put a feeding tube in for her. I am struggling with that and I don’t want her to starve to death. I am asking God to help me make the right decision. I only wish I could bring her home, she is my world and I want to do what is best for her and what God would want me to do. God Bless you and your family, prayers to you.
Mike Coffy,Ravenna Ohio says:I’ve been reading these articles about feeding tubes, good or bad. Well for those who have doubts, I’m not a Dr. but I’ve been on a feeding tube since August 2007. Today is March 25, 2017, I had throat cancer and I had excellent insurance, but by the time I had got to the point of my teeth all dead from radiation and my uvula being cut cut out I was on medicare. If Medicare would have covered it I could have had a prostethis. Excuse my spelling. but you get my point. If not my point is, I’ve been alive for 10 years thanks to my peg tube.
Mike Coffy,Ravenna Ohio says:If anyone has questions about use of the tube or problems,I’ve been on mine 10 years and I think that makes me better qualified than most people. I’ve cooked food,shopped for grocieries ,lived a fairly normal life and I’ve found about all the pros and cons there are having a peg”food”tube. all my meds go through my tube which is great. When I had cancer I went from 170 lbs to 110 lbs. I’m back up to 155 lbs which is what I weighed when I graduated High school 45 years ago. So a peg tube has pros and cons,you can live on one.
Mike Coffy,Ravenna Ohio says:oops,forgot to mention I cooked food for my son, I was a single father raising my son also.since he was 3 yrs old,now graduated college and has a great job and doing good..
Mike Coffy,Ravenna Ohio says:I’ve had my feeding tube 10 years,I was given 6 months to live.my ENT oncologist and I have become great friends. It was hard getting use to the idea of the tube.but it has a lot of pros also. It still gets me riding by a fast food place or the neighbors having a cook out the aroma makes me remember but oh well. And also my meds ,I disolve all of them and put through my tube with no problems. My Pharmacist helped me alot,we’ve figured out the only meds you can’t disolve and take through my tube are time released meds,other wise they all go through my tube. Hope this helps
Joanne says:Thank you for the encouragement. Seems you made the right decision about your mom. God bless you! My dad is 89, has congestive heart failure, is weaker every day needs all liquids thickened, and is not eating hardly anything, even food I make. Need to make the decision of feeding tube & either living with my family or nursing home, but he loves his independence! Peg might be the best to give him nutrition.
Joanne says:Thank you Tricia for your affirmations! My dad 89 cant take liquids & isn’t eating hardly anything. We’re considering a PEG upon Dr recommendations. You said Medicare pays 100%? I gotta look into that! Would he need daily nursing care for the feedings? I’m just at the beginning stages of this whole thing. Thank you!
Lynne says:I’m not a doctor, but a g-tube would make sense for him. Naso-gastric tubes can be incredibly uncomfortable and the g tube is far more comfortable. Having one in place would give him the nutrition he needs to heal and the time to do so. As he improves, more food can be taken by mouth and if he improves enough, the g-tube can be removed.
Celinne says:Dear Sara,
Your comment made me reply to you, first bc my dear mom passed away 1 month ago at 91 1/2,and second bc my name is also Lazar..
I thought and prayed she lives many years more,and i did all i could
to take care of her .
She had a stroke,and at hospital they pot her the tube,she was positive and obedient,then she was in rehabilitation in a nursing home for 100 days..only to me she complained about many things,but i thought that it is only natural to have various symptoms,bc of the situation.and all will be better when we come back home…
Most of the time when she was eating,she was like suffocating..after 2 weeks at home,the aide moved her from the chair to the couch..she held her from the chest ..the same moment my mom suffocated..began to breath heavy..in about 10 min she was dead..
I suspect that the tube was not installed well.touched the lungs and caused pain and suffocation..but i did not give the importance .thinking the doctors know all..
Please agree to install the tube to your mom,and be aware of any sign,follow you intuition,and don’t hesitate to ask doctor about everything!and if you can,take your precious loved mom home with you! the nursing home where my mom was is considered one of the best,but when you are there hours every day,you notice that not everything there is ok…any way, at home with your care all will be much better!
My mother is 87 years old and was diagnosed as having a mild stroke. She did not want to eat and was placed on a puree diet. I called her doctor and they prescribed a liquid med that has done wonders in improving her appetite. I believe it is a type of med that is given to cancer patient.
Es says:My father had his last stroke a month ago. His wife decided to go ahead and put a feeding tube directly to stomach. He is bed ridden and nursing home. Dr. says he will not walk again. My father was very active before his stroke. My siblings and I visit him and he lights up and wants to speak but cannot. His hands are very swollen and he has scab in mouth from previous feeding tube. He got pneumonia and Dr. and staff did not tell us. My brother went to visit him and saw him severe. It’s like a roller coaster. Staff says he will not walk or talk again. My father is 74 going on 75. He was very strong and now in weeks, he has become fragile. I’m 37 years old. I encourage him to be strong and stubborn as always. It has always cured him faster then Dr. expected. I tell him to keep strong, have faith and faith in God’s good will. How do you keep strong when you live so far and have no control or rights to your parents well being? Is it being selfish that I try to keep him positive and to keep fighting and have faith? I just wish some day people do not have to suffer so much with something that’s supposed to help. I love him and I pray he knows his children love him.
Kate says:I have witnessed twice the “harrowing” effects of removing the feeding tube and then having to watch as my loved ones were left to die of starvation and dehydration. Then having to watch over the course of 3 weeks in my Fathers case and 2 weeks in my Mother-in-law’s situation that loved and respected person became an emaciated bag of bones. It’s the worst memory that I have and that still haunt me to this day. How can that be ethically right – we treat our animals with far more respect
Es says:My father past away 5/28/17. I want to thank everyone that has written a comment here. All of your words hurt yet brought comfort to me before my father passed. I no longer felt alone. Thank you to you all and for everyone, I wish the best. I hope technology improves and there can be a better and more humaine way for our more severely ill loved ones to be able to survive. I’m grateful to all of you. God bless us all and our families.
Nan Durb says: Go to a different hospitalWe decided to put my 87 year old Mother on feeding tube she had a major stroke hadn’t eaten in 4 days. We weren’t told she had lost the left side of her brain till after we made the decision to put the feeding tube into her stomach. 3 months later now my Mom doesn’t know her children or any one. They get her up sit her in chair, take her to front room to watch cars go by. Put her on walker and two aides taker down hallway. She is in no pain now that we see. She can’t write, she doesn’t try to commuicate with us. Sometimes she gives us looks of just pure hatred. Her mouth is covered in white nasty stuff we don’t know if it bothers her or not. They change her diapers, but when someone can sit up look around we just can’t take her off, but I have to wonder what have we done! Now her skin is looking better I personally wish we hadn’t done it, and the Dr. told us that she would never swallow again, never recognize her family again this is as good as it gets. I don’t see any quality of life for her unless we’re going to see a miracle, noway we can make decision to remove it.
Barbara says: I’m still confused too. Kathy Seid says:G-Tube surgery could not have been a better solution for my 90 yr old mother … for dysphagia + aspiration pneumonia. Her G-tube literally has given her the gift of time, as well as her family the gift of her. At 94+, Mother is walking, talking, and tells everyone she has a nice life. Immediately following gastrostomy surgery, Mother was given 100% tube feedings. Four months post surgery, puréed foods and thickened liquids were gradually introduced. Eventually she graduated two soft food (meatloaf, fish, potatoes, pasta, well cooked vegetables, diced fresh fruit, French toast, pancakes, tea sized sandwiches, cottage cheese, yogurt, soft desserts + thickened liquids) gratification meals per day … w/ several tube feedings still providing nutrition. Tube feedings are titrated according to oral intake. G-tube is amazingly helpful during illness or dental work. Immensely grateful to Mother’s internist for providing her the G-tube option. Truly has been a godsend and her situation!
Hello and I am very sorry about your loss. I agree with you completely. I have been a caregiver for over ten years. I have seen your exact case in the hospital two different times with two separate seniors. I went to visit one of my caregivies at the hospital because I phoned 911 when he was not eating for me and he became dehydrated and I was afraid for him because he normally would eat a lot and on a daily basis. So he was admitted to the hospital and I went to visit him and three days later I went to take him an ice cream sundae which he loved. And the nurse informed me that the family decided to take him off any liquids, foods and all his medication. I was so shocked of this it made me so upset and devastated. The day before he wanted to go home he told me and now he could not even have anything and he was left their helpless with family to make decisions that he would not be going home at all. He did not even open his eyes or nothing. He was not responsive and when I asked the nurse about his condition, she said he is in no pain and it was a slow drip of morphine to try and basically make him comfortable. That was BS as far as I was concerned and made me very sick and angry inside at the family who was just tired of his overall back and forth so many times to the hospital. I would say it was about the money to take care of him in all reality. And he was a very wonderful man. The family never told me that they decides to let him just die and take away all of his meds, food, liquids and being alive as he was a week prior to that. I feel a lot of guilt because I was the one that made the 911 call do to his lack of eating and becoming so dehydrated. I didn’t want him to die at all. I did the best that I could as a caregiver. He was like my family, I become very attatched to these wonderful human beings and to watch the family make poor choices concerning life or death makes me so very upset. And then after he did pass all I saw was a bunch of grandkids over at the house looking for life insurance policies and wills and what ever else they felt the need to take. The saddest thing is he did a lot for them and they did nothing but take and talk negatively about him. That is the worst part about being a caregiver, is when they pass away and you are hurt and you have no say when it comes to making the final decision at the end of their time. I miss him a lot but he is in a better place, with Jesus Christ our Savior. My condolences for your loss. Wendy
shirell plandes says:Hi I would like to ask if Peg is safe for 90 years old man? My grandfather is under medication for mild stroke. He has NGT because he cannot swallow properly and he goes for therapy. Now he removed the NGT by himself, and the effect to his body, become weak and the medicine is not properly take. The doctor advise us to do PEG. I want an advise if its helpful to my grandfather? Thank you.
dorothy freeman says:Oh this makes me so angry too about this subject- and I’m sorry to hear about your beloved dad. In nyc the Doctors say this one minute then that the next. even forget to phone the family today – and get this- they said Anemia Hydrocodone Patient at Trump to ER to ICU5 AT JAMAICA HOSPITAL queens my Mom 94 who just had 2x Blood Transfusions 12/22/17 & 1/18/18 then called for my authorization 15 minutes later on 1/17/18 to do a Simple #bloodThinner if the #platelet levels was high enough ended up calling me back about 15 min later asking for my authorization to SECOND Blood Transfusion 1/18/18
in order to give Mom 94 a #BloodFilter to CLEAR a BLOOD CLOT on her Swollen Right Knee on 1/19/18 Next thing we knee the Doctor gave us MORE news not known to us or authorized by Mom’s family morning of 1/20/18 that the because MOM LOST HER MEMORY AND COULD NOT EAT AFTER SECOND BLOOD TRANSFUSION
they already gave Mom a TEMPORARY FEEDING TUBE – don’t worry the Hospital Doctor told me– it’s a SIMPLE TUMMY FEEDING TUBE – left on no more then 16 days in the Hospital. but stated they believe MOM LOST HER MEMORY after the Second Blood Transfusion while on OXYGEN day of 1/19/18 ? no I shouted NO FEEDING TUBES take it out
Mom’s Doctor stated – Dorothy do this- and you risk the life of your Mom because
right now she’s not able to EAT ON HER OWN QUOTED by DR. QUIOTOM*
1/20/18 (Moderator’s note: unverified solicitation removed.)
After reading these posts-feeding tube decisions are so hard to make. We don’t want someone we love to starve or suffer pain and can make things a little easier for the caretaker or hospitals, but I wonder when you refuse to eat or drink isn’t that your God given rights? And those swallowing tests, can’t they (medical sciences) figure out/fix the swallowing issues – without all those invasive painful techniques by now? And yes my dad was given a PEG the first day entering a Huntsville TX hospital in 1997-about 2 weeks after being diagnosed w/ a cancerous tumor on inside throat-in emergency room after a family gathering and follow up autopsy – where after he barely ate and couldn’t swallow big pain pills they gave him. When he woke from PEG surgery and up to the last day (called code blue) he suffered with stomach pain (they kept him drugged up). The last procedure/surgery – done on his last day (ran a scope up along groin) we were told nothing but pus came from his stomach and nothing else they could do – docter who did procedure barely finished telling us about it – when he went code blue. 2 nights before and after we left – (the only night that someone from family didn’t say with him and the only day he ate like starving animal (was hand fed) they did swallowing tests – told dad he would never be able to eat again. Hours later hospital called – was having breathing issues/wouldn’t keep a breathing mask on/needed ok for surgery (inserting breathing apperadas). Told them I was coming to see what’s going on. They had put him back in ICU, blood pressure super high, kept trying to remove oxygen mask – (told me was aspirating prolly from eating pureed food earlier) dad told me stomach hurt and never get to eat again(nurse didn’t tell me bout swallowing testing). I told dad: don’t need to eat/got feed tube and fluids hooked up/don’t worry, will eat slowly again/best to stay lean (always was a skinny man). He finally relaxed, plus morphine drip – asked nurse if would check feeding tube insert-she did – was infected. Because he calmed down – fell asleep – they cancelled breathing tube surgery. Asked me to get his things from private room and take home. That was last time he was able to talk to us – 2 days later he died. I apologize for not remembering the proper medical terminology – hope the details explain missing terminology. The death certificate listed causes: 1) malnutrition, 2) staff infection, 3 carcinoma tumor. Would we have known the risks of a PEG prolly wouldn’t given permission. I hope this helps somebody with decisions/plans we all should have or have to make and if at all possible. Stay with your loved one when in hospital or rehabilitation facilities, especially at night. My deepest sympathies and condolences to whosoever has or is going through these things. May JESUS CHRIST give us strength and guidance. Pray for bette, less invasive, more natural medical procedures and caring empathetic people to do them – AMEN. [ED NOTE: Some grammar was edited for clarity]
Faith Bishop says:I understand exactly what your going through. My grandmother was in a car accident back in October 2017. She was a passenger in the back seat. A young girl rear ended the car. My grandmother already had back problems & this made them worse. The doctor at the hospital that she was taken to said 2 off her discs were bulging and against her nerves causing her to be unable to walk. She was in the hospital for almost a week before being discharged to a nursing home for rehab. The doctor at the hospital said that if she rested & got therapy she would be able to walk again & go back home. Well, that hasn’t happened. My grandmother started not eating much or drinking. She went from 140lbs. down to 99lbs. It was frustrating to see this. The doctors said that my grandmother had already had Alzheimer’s & dementia and when the accident happened it made it 10x’s worse. I’m having a hard time believing this. I’ve worked in the medical field for 24 years and never heard of this happening. All 24 years have been with geriatrics. They said that’s why she didn’t want to eat. Just the day before the accident my grandmother drove herself 9 miles to the beauty shop to have her hair fixed & then drove 9 miles back home. She lived on her own in a 3 bedroom house that she kept spotless, she did most of her own shopping & paid all her bills by herself. This doesn’t sound to me like someone who had Alzheimer’s or dementia. Since my grandmother had given up on eating or drinking very much, the doctors suggested a feeding tube. My uncle gave permission for this to be done. Before the feeding tube was placed my grandmother was asking for God to come & take her. No one asked her if this was what she wanted. The decision to live or die was taken from her. They have such a thing called palliative care which eases your loved one to go peacefully. To me this is cruel & inhumane to let her lay & suffer like she’s doing now. She just keeps asking for God to help her. She has no quality of life left.
frederick jackson says:You made the right decision .It is better than watch her starve to death.Life is precious and we do what we can to sustain it.My mom is still with us after 3 years of gastrostomy feed.I would have given up on her if I were to listen to those doctors.
Gloria Johnson says:You still can aspirate. Since he is coughing a lot. You can not lay flat. The liquid in belly can cause coughing. When you lay flat not good.
I am a caretaker. I have to keep my client sitting up or they will start coughing. Make sure you start the feeding tub speed slow. Build up to a faster speed. His head should never be even to he stomach I hope tbis helps. The journey is great for my client already gain 25 pounds and smiling again. We use bottle water and LinCare food. No stomach problem only some extra gas from time to time.
Hello,
My mother has been hospitalized for the past 3 weeks due to severe dehydration. She is diabetic and Alzihemers. She was placed on an NG-Peg for nurioushment, I assume as a temporary solution, as she is unable to swallow food by mouth. She is gaining weight and strength. She was recently changed to a G-tube. My concern is the long-term effects this may cause and the care taking for her by her spouse. What services should/could be provided for in-home care in Texas. I just want my mother to have quality care and be provided with services she deserves. I look forward to any suggestions.
Thank you!
I pray that your Dad is okay ! It is so hard. My mother fell Christmas Day and broke her neck!
She had to have a tube in her Nose and then about 3 days later they recommend a peg tube!
It was heart breaking!My Mom ate, was living in assisted living home until this happen! I hated it and so did she! We went back and fourth with no drinking water and she was so thirsty! Begging for water. Then the speech said they were done and was all they could do! Still on peg tube! She lost weight and got weak! Went to nursing home and more speech and finally passed her to eat for about two weeks and she ended up getting Pneumonia! They stopped everything again and put her on purée foods! She ate it but got tired of it and list 12 lbs. They also said my Mom had Dementia! It’s a Vicious circle! She got sick again and now she can eat or drink
Again!! I just don’t know! I don’t want to lose her but this is so depressing!
Need other options! Prayers and good luck w your Dad.
