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BOB ABERNETHY, anchor: We have a story today about an ethical dilemma in the care of patients with Alzheimer's disease. More than five million Americans have that terrible illness, which gets progressively worse and for which there is no cure. After a certain point, should an Alzheimer's patient be kept alive with a feeding tube? Many family members say, of course: they should do everything possible to prolong a loved one's life. But some doctors say inserting a feeding tube is inhumane, because it can just prolong a vegetative state for years. All those involved say they want what is best for the patient. But who is right? And who should decide? Betty Rollin reports.

BETTY ROLLIN: Dorothy Gregory, who is 85, has end-stage Alzheimer’s and lives in a nursing home in North Carolina. She stopped eating five years ago, at which point a feeding tube was inserted into her abdomen. That was the decision of her nephew, Bobby Davis, whom she brought up.

(to Bobby Davis): Does she know who you are?

BOBBY DAVIS (Nephew of Dorothy Gregory): No, she doesn’t know who I am. She doesn’t know anyone. Mostly she’s like a vegetable almost, you know. She can’t talk. She can’t do anything for herself. She’s on that feeding tube. That’s the only thing keeping her alive.

Bobby Davis

ROLLIN: Dr. Doug Nelson oversees the care of many Alzheimer’s patients and is greatly troubled by what he sees as the aggressive use of feeding tubes and other measures to keep end-stage Alzheimer’s patients alive.

Dr. DOUG NELSON (Geriatrician, Hickory, NC): You go back to the Bible: Do unto others as you would have done unto you. I would never want somebody to do this to me, because when you look at the patient, they are sitting there. They’re crumpled. They develop bed sores. They get contractures. They can’t move their arms or legs. Their muscles just freeze up, and they are simply laying there existing, waiting for something else to happen that would finally kill them.

In a typical patient with Alzheimer’s, they gradually get worse and worse, and then at some point they stop eating. One of two things happens at that point. Either one, we keep the person comfortable. We continue to try to offer them food or water, or both and they eventually just peacefully pass away. Or sometimes what happens is the family insists on a feeding tube, and we’re forced to put a feeding tube in there, and then they will lay there for months or years.

ROLLIN (to Mr. Davis): If you had to make the decision again, would you have the tube put in?

Mr. DAVIS: Yeah.

ROLLIN: You would?

Mr. DAVIS: Sure.

ROLLIN (to Mr. Davis): Because...? Just to keep her living?

Mr. DAVIS: That’s right. If you believe in God, a miracle might happen. But I just don’t think it’s right, you know, to choose whether a person lives or dies.

Davis and Gregory

Dr. NELSON (with his patient Yula): How are you doing, girl?

ROLLIN: Many family members decide on the feeding tube because they think the alternative is starvation. But Dr. Nelson says that’s not how it is.

Dr. NELSON: The patient will die, but they will die of dehydration, not starvation. When you think about it, that’s how God designed most of us to die. We get some kind of disease. We stop eating and drinking. It’s the lack of water will kill us within a couple of weeks, not the lack of calories.

ROLLIN (to Dr. Nelson): How painful is that?

Dr. NELSON: It is not painful at all.

ROLLIN (to Dr. Nelson): Why, then, do family members choose a feeding tube?

Dr. NELSON: It’s always out of guilt, and we are the only Western country that I know of where it operates like that.

ROLLIN (to Dr. Nelson): Guilt of what sort?

Dr. NELSON: That they’re not doing everything that they could for their loved one.

Doug Nelson

ROLLIN: Sharon Newell’s mother Barbara Kinley has suffered a series of strokes as well as dementia. After the feeding tube was inserted she got pneumonia, a common complication of the tube.

SHARON NEWELL (Daughter of Barbara Kinley): She was in intensive care for 28 days; on a ventilator for 14, and at that point the doctors and nurses and even other family members were like, “You need to turn it off and let her go,” etc., etc. That is just not — wasn’t an option. We are a religious family. My belief is in God and that we are all in his hands.

ROLLIN: Sharon has also seen to it that her mother has what is called “full code,” which means that everything medically possible should be done to keep her alive.

Ms. NEWELL: She would never, ever give up on one of us, regardless, and there’s just no way we could ever give up on her and not give her every benefit she deserves.

ROLLIN: Because her mother is on Medicaid, as most of these patients are, Sharon does not pay for these benefits. The average cost of a semi-private room in a nursing home is more than $72,000 a year plus the cost of whatever medical interventions are used. The insertion of a feeding tube is only a few thousand dollars, but the main cost is the result of the feeding tube which can prolong a patient’s life sometimes for years. Dr. Nelson is one of the few doctors who tries to convince families how bad a decision feeding tubes can be. But doctors are not paid to do that.

Dr. NELSON: And so from a money issue, most doctors that do nursing home work find it hard to take the time out to do it for free and talk with the families. So if the families say, “I want a feeding tube,” many times it’s a knee-jerk reaction: “OK, fine. We’ll do a feeding tube.”

ROLLIN: And not to comply with the families’ wishes is to risk being sued.

Dr. NELSON: If the family says, “I want a feeding tube in,” you have to put one in. All our malpractice insurance companies tell us if they do that, you put it in because if you don’t, patient dies, you go to court, you’ll lose in court.

ROLLIN: What bothers Dr. Nelson most of all about this situation is his conscience.

Dr. NELSON: I question myself: “Am I sinning by continuing to have this feeding tube?” When you look at the chart, the doctor’s name that signs the order for the feeding tube is Doug Nelson. And I always wonder what will happen when I get to heaven and I’m confronted by God: “Why did you keep signing your name to that if you thought it was wrong?”

NICOLE LEWIS (RN): I’m just listening to your chest this morning.

Nicole Lewis

ROLLIN: Nicole Lewis is a nurse who works with Dr. Nelson.

Ms. LEWIS: Once a tube feeding is put in, the decision’s much, much harder for a family member, say complications do arise, to make that decision to take it back out, and a lot of times that is what happens. Whereas if the decision may have been even thought through a little bit more, they had been educated a little more about what kind of complications could arise, they may not have made the decision to put the tube feeding in to begin with.

Ms. LEWIS: We will be back in a little while. OK?

ROLLIN: One way to fix this situation is for Alzheimer’s patients to have both a living will and a health care power of attorney, which protects you from treatment at the end of life you may not want.

Mr. DAVIS (talking to Ms. Gregory): Wake up. Look at me. Wake up! It’s Bobby talking to you. Wake up!

ROLLIN: For RELIGION & ETHICS NEWSWEEKLY, I’m Betty Rollin in Gastonia, North Carolina.

ABERNETHY: The ethical arguments also surround removing a feeding tube once it's in.  The Vatican, among others, says removal is immoral.

End of Life Dilemmas

Alzheimer’s disease gets progressively worse and there is no known cure. After a certain point, should an Alzheimer’s patient be kept alive with a feeding tube? Many family members say, of course: they should do everything possible to prolong a loved one’s life. But some doctors say inserting a feeding tube is inhumane, because it can just prolong a vegetative state for years.

  • David

    Maybe if family members and the Pope had a feeding tube put in them for a few weeks and told that is the only thing keeping them alive, maybe they would not think it was immoral not to put it in the first place and/or to take it out.

  • Thaddeus Pope

    Dr. Nelson says “[Y]ou have to put one in. All our malpractice insurance companies tell us if they do that, you put it in because if you don’t, patient dies, you go to court, you’ll lose in court.” The North Carolina is currently exploring giving some protection to physicians like Dr. Nelson to refuse to comply with treatment requests they deem inappropriate. Many other states already give physicians this protection.

    If there is a lawsuit, physicians almost always win. Pope, Involuntary Passive Euthanasia in U.S. Courts: Reassessing the Judicial Treatment of Medical Futility Cases, 9 MARQUETTE ELDER’S ADVISOR 229-68 (2008).

  • Patricia Chute

    This is a very important story. I serve on the Board for our Hospice, and we need this story to be seen by a wide range of people.

  • Channah

    Isn’t putting a feeding tube in, at this stage, taking it out of the hands of God? Keep the tube out, and God takes over as to if the person lives or dies. To me, it is going against the will of God to put a feeding tube in.

  • Eileen Sabel

    as a Jew AND disabled, I can only say ONE THING-T-4,NAZIS.Also,I’m58 y/o,and at 32 thry told ,y parents”she’ll never last the nite”,&as for the nursibg “home”,EVER HEAR OF ATTENDDANT CARE?

  • kathy davies

    While I understand why people would want to do whatever possible for their loved ones, as Christians, why wouldn’t they want them to be with God? A fundamental concept in Christianity is life after death as promised by the risen Christ. We should tearfully rejoice the fullfillment of this promise.

  • Brigit Barnes

    Too often the media portrays a feeding tube as an extreme measure. The media ignores the fact that such tubes are used by many individuals who have severe disgestive problems and are unable to “normally” eat for whatever diagnosis. These patients are otherwise able to walk around and do everything as usual. It is not the feeding tube which is the issue. The real issue is the cost of these patients, and such ethical issues are always discussed, as did this article, in the context of how long the patients live and at what “cost”. A person’s “cost” is an unacceptable consideration in a social justice discussion.

  • Joanna Mucera

    First let me start off by educate you as to what happens in active starvation as well as inform you that the only reason that the Alzheimer’s patient dies of dehydration before reaching the starvation stage is because of the increased nutritional requirements of the elderly debilitated. I will then follow with more (I hope) enlightening information on why food tubes in Alzheimer’s patients should be used. While it is true that there can be devastating side efffects. These can be ameliorated or prevented with gastrointestonal antispasmodic drugs. Thereby enabling life to continue. Effects of biochemical starvation are as follows. Atrophy of the stomach weakens the perception of hunger, since the perception is mediated by the percentage of the stomach that is empty. Patients in active starvation are often too weak to sense thirst, and therefore become dehydrated. This is magnified a thousand fold in the elderly debilitated. All movements become painful due to atrophy of muscles, and due to dry, cracked skin caused by severe dehydration. With a weakened body, diseases are commonplace, especially in the debilitated. Fungi, for example, often grows under the esophagus, making swallowing unbearably painful. The energy deficiency inherent in starvation causes fatigue and renders the victim more apathetic over time. Interaction with one’s surroundings diminishes as the starving person becomes too weak to move or even eat. Imagine what happens when these symptoms are complicated by the inability of Alzheimer’s patient to communicate.
    Effects of dehydration are as follows: First, worsening of Alzheimer’s dementia symptoms are the initial symptoms, eventually the patient experiences unconsciousness, followed by coma and then death. Whey would a person who considers himself a healer allow anyone, even if they are not capable of articulating their suffering to endure such a painful death when we have the benefits of modern science to prevent it or at the very best-to at least stave it off. We have to weigh the risks against the benefits of any medical intervention when considering its use. In as much as the risk of not instilling a food tube is the ultimate one-that is death, witholding any potential prolongation of life is most assuredly immoral. Thefore, the only reason to withhold enteral nutrition in order to prolong life is economic (absolutely an immoral reason). I just wanted yo let you know that not only have I studied to become a physician, have been a research scientist of nutrition in terms of human biochemistry and evolutionary biology, I am also the surviving daughter of an Alzheimer’s disease. When my mother was dying, both as a scientist and daughter, I did anything and everything possible to enable her to live even on more day. As empathetic healers, we have no right to allow a patient to die when it is possible to help them, even one iota.

  • LORETTA

    Once a person is unable to make medical decisions for themselves, another person must do so. This is usually a family member. So often we deny the eventuality of death and never discuss how we want to be cared for when faced with end-of-life medical decisions. Although there is no guarantee that your loved ones will comply with your choices of care when you have lost the capacity to voice them, they are more likely to make the choices you want if you have previously discussed them.

    The most difficult decision to make is for or against tube feeding. Many gerontologists like myself agree with Dr. Nelson that feeding tubes are abused in the elderly population with dementia. Natural death is now an oxymoron.

    Feeding tubes do not give a person quality of life and the uncomfortable side effects are plentiful. We all need to be discussing end-of life care decisions while we are healthy. We need to review them whenever we face a medical crisis. And most importantly we need to choose someone we trust to make life-and-death decisions when we cannot.

    The most crucial medical treatment decisions are around feeding tubes and ventilation. Think about what “life and living” means to you and tell your loved ones when to say “enough.”

  • Julie

    If these people believe that they’re going to heaven, why wouldn’t they skip the feeding tube and go straight there?

  • John D

    I thought it was funny that the nephew said people should not decide in matters of life and death, yet that’s exactly what he’s doing by putting a feeding tube in his Grandmother’s arm. She should have died on natural causes but because of his guilt or whatever, she’s being kept alive — that is if you call that living.

  • Rev. Dee Dee Tempel

    Thanks for the time on your show devoted to this subject. My brothers and I have discussed what we will do when the time comes for our mother to require a feeding tube. We have already told the nursing home where she lives that we will not want that procedure done, and we know from conversations before she started to go “downhill” that she would not want one put in. My husband and I are pastors, and we feel like it’s the ethical thing to do in not putting in a feeding tube. A doctor told us a couple of years ago that it’s “criminal” what doctors and hospitals do to the elderly, and I have always appreciated his honesty. The doctor on your show seemed to be a doctor with the same compassion, and it’s too bad that he has to follow families’ wishes when he feels strongly that it’ not in the patient’s best interest.

  • Patricia

    “If these people believe that they’re going to heaven, why wouldn’t they skip the feeding tube and go straight there?”

    Right, and why doesn’t everyone else who believes in Heaven just stop drinking (and eating) and go straight to Heaven too? It’s “not painful at all”, after all. / sarcasm

  • Sue

    My mother died one year ago. She suffered from Parkinson’s dementia – a very terrifying, paranoia type of dementia. She knew something was wrong with her. The day after successful hip surgery (from a fall), she began refusing water and food. After consultation with the doctors, hospice was called in. After discerning that she had begun to stop eating and drinking much in the months previous to the fall (something we had not thought much about), they said she had started the dying process months ago. The blood transfusion she received after surgery shocked her system and did more damage to her than if we had let the process continue on its own. It was her decision to stop eating and drinking in the hospital. It was hard to let her go, but to put a feeding tube in would have been against her wishes and caused her more pain and discomfort. She was ready to be with Jesus and the other family members in heaven. We think she actually died on the operating table and was revived, because after the surgery she kept saying she saw her sister and Dad and my sister. She wanted to go back. We respected those wishes

  • Terry

    My sister had surgery 2 years ago and has never completely recovered. Several times she had been unresponsive and I was told that she would not survive. She has coded a couple of times (Heart stopped, Lung failure, Stroke) She is on life support/Ventilator & Feeding Tube. She is 54 and currently responsive and is writing. She does not want to be removed from the vent or feeding tube. The doctor continues to talk about her poor quality of life and how he would not want to live like that. My point is, if i had agreed to sign the DNR. She would not be alive. She is glad she is alive and I feel that GOD made that decision.

  • Becks

    I just saw this story. We are at this moment facing this decision with my mother. She is ninety four. She has two horrible infections and is refusing food. They want to give her a feeding tube and honestly, I am not sure. She does have a DNR and I am pretty sure she would not want to be hooked up to this thing but, then again since she can’t tell us directly I am not positive. I DO feels staff are really pushing for it. One comment that was made was how it would “Make it so much easier when we try to give her food or other things as everything can go into this same line” I am sure she didn’t mean it but, honestly I don’t care if it makes things “easier” for staff!!

    The issue is whether or not this will improve the quality of mothers life. Will there be complications? Will she ever be as she was just because of this tube? I have asked all these questions and the answers from the hospital are all so framed as to make this seem a positive thing to do. However, I have seen this done before to another family member and thought it was horrendous!

    After agressive antibiotic treatment for over two weeks they have managed to get mother to be sort of “halfway” rid of her infection with “some” improvement but, she won’t eat at all so here we are with this decision. The only thing she can coherently say at times is “Get me out of here!” Dear god…what is the point of all this aggressive treatment in someone her age who clearly is suffering and who may only suffer more and more with more treatment. I suggested a first consult with hospice since she was at the point of dying for over a week…staff rejected that idea with “Oh! We are not there yet!” Well, when are we? I only want guidance from a more impartial source and someone with more experience with end of life issues. If hospice said “We are not there yet, go for the feeding tube as a last measure” then I would say “fine”

    This issue is so hard in our culture to grapple with. Mother has senior dementia even when she is “well” She has had repeated and increasingly more severe infections over the last two years. Every time they pull out all the stops with this time being the closest to leaving us she ever got…how many more infections? How much more “treatment” ???

    My biggest fear is denying her a peaceful passage from this earth. I fear she will have some complication or other again and end up having some “measure” taken that will end up taking her life. My best hope for her is that she will be kept painless, comfortable and go with her loved ones around her. The longer this situation goes on the less likely that seems. I feel for every single person who is faced with these decisions and situations. God Bless you all.

  • Kathy

    My 71 year old father who has Parkinson with lewy body denentia is currently in the hospital woth an UTI. His condition is poor. He is delusional 90% of the time. He had an aspiration exam from the speech therapist and he is unable to swallow. A feeding tube consult has been made. He is very week and is breaking my heart. I am torn whether to proceed with PEG or to allow the lord to take my Dad. PLEASE HELP

  • sherry

    I am obviously a late-comer to this site. As a physician assistant, I’ve seen many patients die. I’ve seen many feeding tubes put in. The procedure itself is no big deal; yes, there can be complications, and yes, more procedures would need to be done to deal with any complications. Unfortunately the person often can’t communicate his/her wishes for or against all this. If they have a Living Will (DNR), that is a sure sign that they DON’T want all this stuff done to them, and my advice is: Don’t start! Each decision snowballs and leads to more decisions, which is exactly what they DON’T want. For the hospital staff to deny you a Hospice consult, Becks, is unconscionable. That should be YOUR decision, and if necessary, consider it a Second Opinion. Hospice staff are trained very well to determine if a patient meets criteria (meaning they will probably die within 6 months). They will not “hasten” your loved one’s death. They will just make end-of-life comfortable, and death peaceable. That, personally, would be how I would wish to go, and with some damn dignity too. There is a sad joke in the medical field that if you don’t have a hole to fit a particular tube, they will make one. If you have ever witnessed a Code, it’s ugly. It’s scary, it’s tense, it’s sad, it’s draining…and that’s on the STAFF. If you could imagine yourself stark naked in front of 10 or more onlookers, with someone leaning over you and crushing your chest 100 times a minute, breaking your breastbone at some point but going on with CPR anyway, people running around barking orders, sticking large needles into your veins and arteries, shoving an endotracheal tube down your throat, forcing air into what might be your stomach, or one lung, or both (do you know what barotrauma is?), spreading your legs to put in a Foley catheter…what you see on TV is a nice simulation but not the real thing. It’s one thing if a person is relatively healthy, a productive human being with a chance of recovering that state; it’s something else entirely if the person was in a vegetative state to begin with. For people who believe that life and death are in God’s hands, maybe they should not interfere, and just let God and nature take their course. If a miracle is going happen, it will happen no matter what you do or don’t do…”Let go, Let God.” For those whose lives are not ruled by religion, perhaps these decisions are less troublesome. In any case, it behooves us all to be educated; if you have not already done it, go to an Estate Attorney and draw up a will. While you’re at it, have the attorney draw up Living Will and Healthcare Surrogate paperwork. Give a copy to your family doctor; keep a copy somewhere safe but not hidden at home. Inform your loved ones where the paperwork is so they can find it in an emergency. Discuss these issues with your family so that your wishes are widely known BEFORE the issues come up. Let it not be a matter of debate when you are lying there, unable to move or talk, as to what you would want. Your family should be able to answer, clearly and in unison, that they know what you want (whether that is the wish for EVERY possible treatment, or NO treatment).
    I agree with Dr Nelson and wish more doctors had a conscience. But the real key is to avoid these problems so they don’t arise. Education is so important.

  • Dawn

    My grand- mother who was a wonderful person died of complications from Alzheimer’s. It was hard to watch her go but putting a feeding tube in would not have been what she wanted. The day she past I told her to let go.
    I do not know if she understood but a few hours later she passed quietly. We did not loose her that day we lost her 5 years before. She did not know her children, grandchildren or great grandchildren. The walks by the river and the afternoons at the zoo were gone. This is what people need to think about before they put a feeding tube in. Their loved one used to be a person with dreams, is this what they dreamed for themselves?

  • Michael Kararsch

    I believe that a feeding tube as well as being a wast of time also saps society of those resources. I am only 18 and I DO NOT WANT TO BE ON A FEEDING TUBE! If i cannot support myself then I do not need to be alive anymore. I am a Christian and believe that God has a plan for all of us. We have to know when to let him take over.

  • Sue

    My mother was diagnosed with Alzheimer’s 8 years ago. Two years ago she developed an infection in her salivary gland. The infection put her in the hospital for several days. Up to her hospitalization I was able to take her out each week for ice cream and I could go to her assisted care home and walk the halls with her and we would watch TV and have conversations about the things going on around her. After several days in the hospital they told me that she wasn’t able to swallow and that feeding her by mouth would cause her to take the food into her lungs and she would get pneumonia. They said they could put in a feeding tube or “let nature take its course.” My brother and I decided that we should have the feeding tube inserted even though her living will stated that she didn’t want it. Our decision was based on thinking that she would go back to her life before being in the hospital but now she would have a feeding tube. Well, we were wrong. She hasn’t walked since that hospitalization and her dementia was immediately worse. There were some efforts made to rehabilitate her to walk again and to swallow but it never went anywhere. We moved her into a group home and she actually had one good year there. She couldn’t walk but she recognized all of us and she talked all the time, smiled, and was happy. Then almost overnight she didn’t recognize me and for nearly a year she has declined to the point that she’s hardly aware of her surroundings and what little she says I can’t understand. Since the feeding tube is already in, I cannot in good conscience and because of my faith have it removed. I’m mad that God hasn’t taken her and I’m mad that we made that first decision to have the feeding tube inserted. The hospital had her living well and they never stopped us. My brother lives across the country and only sees her once a year and he was shocked at her demise over this past year. He would like to remove the feeding tube and as I said even though I can’t consider doing it, I thought it was only fair to him for us to get information about it. We talked to Mom’s doctor about it just to see what options we have and her doctor will not consider removing the tube. My advice to anyone else who has to make the intial decision to have a feeding tube inserted is to think about what your loved one’s life will be like a year or two down the road. I agree with those of you in this conversation who believe that inserting the tube is against God’s plan. I now believe that it was His plan two years ago that my mother would die. Why did I think that I knew better than Him?

  • Mikhail

    I am living throught this with my father now. He is 79 and used to be a very caring, kind, fit and active person before dementia (diagnosed ~7 years ago, was already developing years before that). 3 years ago I left directives in case of an emergency not to insert feeding tube, not to re-start heart etc. . He was able to walk with my help 2 months ago. He was may be recognising me sometimes, words spoken were rare and inconsistent. About a month ago he got infection on his back and nursing home eagerly put him to bed. End of September he stopped eating for few days then ate a little, then I got a report on fewer, then hospitalisation with pneumonia on the next day. I was in the car away from town when the hospital called and asked for my decision as situation was critical. I asked them to change my directive and to do everything possible. Few hours later doctor called and in an hour long coonversation pursuaded me not to chnage directive but to continue intravenous antibiotics and oxigen only. On September 7th I was told that my dad is paleative and that he would be more comfortable if all tests and intravenous were stopped. He only gets morphine since then (2 weeks now disconnected from everything, 25 days without food). 3 days ago I was told he has 24 hours to live. He is still coping, he is a strong man. From my observations I suspect he got almost cured from pnumonia (doctors tell me otherwise). I sang him some songs from my childhood that we used to sing together. It seemed to me that he followed with moarning. I brought him taperecorder and some old tapes. I am told he is comfortable, he is probably not. He is now very thin, choking from time to time, moarning, trembling…I know for sure he would have not chosen this situation for himself, neither do I. It is not black and white situation, all choices are very dark. May be I should have chosen to stop antibiotics right away when he got hospitalised. I think I was right not chosing the tube. I agree with Dr. Nelson, Sherry, Sue and others, we need to find strength, to decide for our loved ones who cannot do it themselves to stop suffering. We need to make our own decisions on our own destiny in such situation beforehand and leave clear instructions behind for family and friends. P.s. just got a call asking me to go to the hospital: “near his end”…..