How Do You Feel about End-of-Life Nutrition and Hydration?

By , SparkPeople Blogger
One of the roles I performed as a Clinical Dietitian was helping medical teams determine artificial nutrition needs for people when they had difficulty taking adequate food and fluids by mouth. Sometimes that nutrition and hydration support came in the form of a special IV formula and other times required a liquid formula combination delivered through a tube into the stomach or intestines. The goal was to provide adequate fluid and nutrition support following surgery or a prolonged illness so the patient could return to health as quickly as possible.

I have personally been on the other side of nutrition and hydration support decisions as well. When my sister-in-law was in intensive care on a ventilator for over five weeks, specialized IV support was vital and necessary to provide all of her nutrition and hydration needs. The need for nutrition and hydration support was straight forward because the care plan obviously intended to promote healing and restored health. The situation was different when my grandmother with Alzheimer's disease was no longer able to eat or drink sufficiently. The family conversations related to artificial nutrition and hydration were different as well. We had to take a deeper look at how we really felt about nutrition and hydration.

My grandmother was a remarkable woman. She was very independent and self sufficient, hard working, athletic, and health conscience. In her 60s, she was still asking her grandchildren if they wanted to see her stand on her head and in her 70s, her doctor finally convinced her that it was probably best to give that up. When she developed problems with her memory in her early 80s, she had no health issues and did not take anything but a multivitamin each morning. Her goal was to live to be 100 years of age and I believe she would have made it without Alzheimer's disease. Unfortunately, because she was so healthy, our family never thought about talking with her about her medical treatment wishes before she cognitively was no longer able to have the conversation. She was an independent woman that made her own decisions and told her family about them after they were made. Advanced directives and living wills were not all that common fifteen years ago, so there was nothing written to provide direction when the time came. When the conversation about 'extreme measures' came up when her health dwindled, that was easy to answer. We were certain she would not want to be "kept alive on a machine." However, we were initially not so sure how she would she feel about hydration and food. Would she see those as extreme measures or as a former nurse aid in a retirement community would she see them as a typical course of care?

Deciding whether to provide nutrition or hydration support were tough questions for the family when the time came that she could no longer eat or drink enough on her own. We realized that some research indicated that in the last days of life, it is not beneficial to provide artificial nutrition and hydration but with Alzheimer's how do you know for sure when they are facing their last days of life. We wondered if everything else in the body is working but she just cannot eat or drink enough, would she die of starvation or dehydration if she did not receive proper food and fluids instead of dying from the disease. When the decision against offering artificial nutrition and hydration was made by her daughters, it was hard for me although I believed it was the correct decision. The granddaughter in me had to accept that my grandmother was not going to get better with the artificial provisions. The clinician in me had to accept that withholding nutrition and hydration was not allowing her to starve. Instead, it provided the opportunity for her to die in dignity and peace by not prolonging the inevitable but allowing the body to slowly shut down. It also forced me to think about what I wanted for my husband and I and our young children should that decision become necessary unexpectedly.

I realized that when I started working with transplant patients, I reminded my husband and parents often that I wanted to donate my organs and tissues if anything happened to me. However, I do not have as clear-cut a directive for them or my now teen-age children when it comes to artificial nutrition and hydration. If there is a chance of healing and restoration to health, I want the chance. However, how do you put that on paper when every situation that leads to that point of decision-making is different? My sister-in-law was in her early twenties when artificial hydration and nutrition were in question but my grandmother was in her early eighties. How do you make a choice that covers all circumstances for all stages of life?

My grandmother succumbed to Alzheimer's disease over ten years ago. With all the talk these days about living wills and "pulling the plug on grandma," I have been thinking more and more about my parents, my in-laws and the need to sit and talk with them about what they want or if they have already spelled it out in a legal document. I realize that my husband and I should also sit down and have this conversation as well since neither of us are guaranteed tomorrow and do not know what the future holds even though we are only in our 40s. You probably have not spent much time thinking about how you feel about artificial nutrition and hydration. You may be like me and not yet talked with loved ones about their feelings and wishes either. I hope you will make the time after reading this blog.

Do you have a living will or an advanced directive? Have you ever thought about talking about artificial hydration and nutrition wishes with your loved ones? Will you now?

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One never knows what they will do until put in certain situations. I have been there, and for me I chose comfort care for my Mama. She died after just 3 days fully hydrated and fed. When it's your time, you will go! Report
I am not a professional nurse etc. This is a hard call and a personal one. I am christian and I hope and pray when my time comes for me to go I can just do that Go. Decision like this can tare a family a part. Death is a part life I hate. Not feeding someone that is alive and breathing on there own to me is dice. Terry shavio comes into mind look how that turned out. Report
Great blog. I think everyone should have an advanced health directive (living will). If you don't have one, you should go do it. I'm a physician and during my training, I saw many a family torn apart when having to make end of life decisions for a loved one. These are difficult decisions that are highly personal for each individual, which can be made far easier on loved ones if there is a legal document, put together by the patient in question, specifying their wishes. And this is not only end of life care, if you are incapable of making decisions, you should have a designated person in your living will. I'm 40 and I think it is important to have my legal documents in order (and a card in my wallet to alert emergency personnel to this fact, should the unexpected occur.) Report
My mother also died of Alzheimer's at age 82. My son had passed away just 4 weeks b4 my older sister and one of my 2 brothers decided our mother had to go to a nursing home. I was in no shape mentally or emotionally to argue at the time. Because my sister had her placed in a home close to her she became the voice for my mother and for the other 3 of us. I was astounded the day I walked in and found my mother in the fetal position and obviously dehydrated and having no means of getting water or any nutrition. My sister has since passed away from a heart attack although I love her and miss her, I still have anger and resentment towards her in my heart for her making that decision without any input from me or our brothers. I will never allow my husband or any of my loved ones if asked my opinion to die without comfort care unless I have something in writing from them or they have told me personally they do not want it. My husband and I have discussed this and know we need to do a living will. We are in agreement that withholding water is cruel and unnecessary and neither of us want that done to us. It is a lot different from heroic efforts and being kept alive on a machine. I don't want that neither does my husband. Report
One way of assessing the use of hydration and feeding tubes is to consider the question, "Will these means provide greater comfort or discomfort to the patient?" Though I am not a medical professional, from personal experience I have seen that hydration can result in greater comfort. If the patient's body cannot use the nutrition, that rejection would be a sign that the feeding tube is no longer a need.... When the patient's body shuts down naturally, it's pretty obvious that death is approaching. Report
I am an RN and I worked for 8 years with patient's and families preparing living wills and medical power of attorneys. In most cases, it was with patient's who just wanted to get them prepared in case the day should come that end of life decisions needed to be made. In other cases, it was for the family members to decide about removing life support.
It is my understanding that providing nutrition and hydration during one's "last days" will not prolong their death. It is my personal opinion that they should be provided as "comfort care", just as you would pain medication.
I am sorry to say that I do not have a directive to physicians (living will) of my own. I do need to prepare one. I am almost 53 years old and you just never know when the Lord may decide to take you "home".
The doctor's I worked with DO take into consideration the patient's wishes as expressed in their living will. I will admit though that if family members are adament about certain requests, like nutrition and hydration, during end of life decisions, the doctor's WILL listen to them over what the patient's desires are. The main reason this happens is because "the dead won't sue you, but those left behind alive will".
At the end of my grandmother-in-laws life, HOSPICE stopped all her food and water. I remember watching her, lying in bed, dreaming; Her hand moving from her stomach to her mouth like she was eating potato chips! It still bothers me that she died hungry! It was then I decided that if faced with the decision to stop food and water during the ending days of my loved ones life the answer will be NO! That is a personal decision that a person should make before they reach the end of life, and if it's not made it shouldn't be forced upon them. FOod and water is much different from life support! Report
My mother is 76 and she has a heath directive (legal doc.). The one thing not in it is the question of food and water. I will definately ask her after reading this article. She was with my Dad thru his hospise and learned that food and water is not really good fo rthe body as it is in its final days - it takes energy to covert the water and food to nutrients that are not going to be used anyway. The results are the body is shutting down and the food just sits and rots in the stomach and could cause additional adominal pain. It is a very difficult decision, and Must be discussed before the time has come. Everyone needs to be on the same page to make the transition to the next life easier. Report
i know that each incident is different but i feel that the one suffering is the shoes we need to stand in at the moment and deciding what they want for themselves. It is a hard decision to make all in all but i think that the point of view to look at it from Report
I believe that feeding someone is not artificial means; if it were, our infants would die without this "artificial assistance". It seems a small thing to do for the elderly in return for the care they provided us as infants. It seems a justified circle-of-life, one-hand-washes another kind of thing. The reason I write that is because in truth, my living will and advanced directives have no power should my family wish to ignore them. From what I understand, the family of the patient holds the power and directs the medical personnel. It is a myth that the medical personnel follow the living will and advanced directive of the patient as I had originally thought. Unfortunately, the medical personnel abide by the wishes of the patient's relatives and not the patient, herself. I want to know that I will be fed should I be unable to do that for myself as long as I have life in this body. "Life is in the blood". As long as my blood is still flowing, I am alive and desire to be fed. I have a living will and advanced directives and when I update it next year, I will add a menu plan for my feeding tube starting with 8 glasses of water daily. Mondays will be Italian spaghetti and meatballs, Tuesdays Mexican burrito and taco with rice and beans. Remember the guacamole and sour cream please. Mild salsa if you don't mind. Wednesdays will be McDonalds Combo Extra Large (fries well done) and ice cream cone. Thursdays will be pork chops, green beans with almonds, mashed potatoes and chocolate brownie. Fridays will be fish, garlic mashed potatoes, and spinach and carrot cake (remember the old days when Catholics fasted meat on Fridays?), Saturdays will be fried chicken, corn on the cob, coleslaw, and watermelon. Sundays will be pot roast, carrots, potatoes, and cake with ice cream. Will my family abide by my wishes? Only time wil tell. Report
Great blog. Reminds me of conversations regarding Terri Schiavo when her family and husband were going to court over these issues. Report
Yes, we had to make that decision with my step-father-in-law after he had a stroke and the doctor said he would never recover. he had been through several strokes and was not in good health anyways.
the doctor said that could spend a few miserable months in a nursing home on artificial feeding or we could take away the tubes and just let him go.
It was a horrible decision for my mother-in-law but we told her that it was her decision but it would be best to take the doctor's advice. she did finally and he passed peacefully about a week later. Report
I have a living will and advanced directives. I really believe that everyone should put their wishes in writing. I have very strong feelings about the choices I have outlined in my living will, and don't think that everyone should believe as I do, but that they should all have their wishes carried out. The only way to ensure that is by having their wishes in writing. Report
Rather apropriate this topic came up today. My 61 y/o brother died suddenly & unexpectantly on 9/12. We are still grieving but I wonder what we would have wished for him had this been long term illness. My DH & I have begun discussions on living wills and what we would wish done but have not discussed the nutrition & hydration. As a RN I have seen and worked with both situations and can't become comfortable with the dehydration of an individual even though I know the reasoning. I don't think I could express this wish for myself as I love drinking and find thirst very difficult. Is death positively emminent or is there a 1% chance of living. A good example of this is my D-I-L's mom was given the 1% or less chance and the family said continue on with treatment. She is also an RN but not able to work any longer. She does have good quality of life and is vibrant today after a year of recovery. It is a difficult time for family to make these decisions. do I know what I would do? Probably not until faced with the situation. Report
Wow - this is hitting close to home. My father had a heart attack on Sept 2, but wasn't found for 3 days and because of the lack of blood flow vital organs were affected. He was put on a feeding tube which he absolutely hated. He also had a living will that said if there was no change after 7 days we were to remove all forced nutrition. So we made the painful decision to remove the tube.

We were assured by the doctors that withholding nutrition does not increase pain and that the body actually does some adjusting for a time period. Once the tubes were removed he became peaceful and relaxed. Thankfully he made the decision for us. He passed the day after removing the feeding tube.

As hard as it to talk about it with loved ones I made my mom and step-dad sit down with me and we talked about what they wanted. I've made it clear to my siblings what I choose. If my mind is still alert and there's a chance then I'm all for living. But if I have to be bathed, clothed, fed and don't know who my loved ones are then it's time for me to go. There's better things waiting on the other side.

I think it should be up to the person. Report
When my dad was diagnosed with stage 4 pancreatic cancer, he made the decision that he did not want hyrdration or nutrition. He received hospice care at home for the short month that he lived after his diagnosis. A nurse came in and checked on him periodically but was not at the house on a regular basis. His wife provided all his care. As he slipped away the last week or so of his life, he was not conscious and unable to drink. She administered pain medication by putting a pill under his tongue. His mouth was very dry and I was miserable just watching him. I will always wonder if he was in pain during that time - we had no way of knowing. I don't know why he wasn't given pain injections; it's difficult when you're not the one coordinating the care.

I have already told my family that I want fluids. I don't care about a feeding tube or nutrition but I do not want to dry out.

Tanya raises a very good point about having conversations with your family and following-up by putting it in writing. As she said, it would be impossible to cover every possibility, but if they know your overall feelings, it will make the situation a little bit easier on them.

And keep sparking away to minimize the chances of developing a horrible disease! Report
I never understood why (in cases where life support was being removed knowing it would cause death, not promoting assisted suicide) it is legal to let someone die of thirst, starvation, or suffication, but it is illegal to just give those same people a shot to let them go peacefully. Report
Yes I have taken care of this but I am going to update it because some things have changed for me. Thanks for the reminder. Report
I have a living will that I want honored. My mother and father had the same philosophy and religious beliefs. That there is a time when God is ready for us and no man should alter that with artificial means of any sort. Report
My father had an advanced directive, and was dying of cancer and being fed through a peg tube. If he were in an institutional setting, we would have had to continue feeding in this matter, but the angels from hospice said that we could withhold water and nutrition at home. If he hadn't had the peg tube inserted after the botched cancer surgery, he would have refused food and drink, the method of choosing death for millenia. We chose to leave him to God as he had told us he wanted. I cannot say enough about the strength and guidance we received from the hospice nurses. They were a blessing to all of us during this difficult time. Report
Having my father pass away five years ago and my mother had a stroke just a short time later. It was up to my sister, brother and I to decide for her as to what she would want. We new she being 87 at that time didn't want to be kept here when her body started to shut down. She made that clear during the four years after that as she suffered the use of her whole right side and slowly her memory and mind. She started declining food and water though we tried to push it. The Care Center she was at explained the process when a person is dying but it was our choice. We didn't denigh her water or food but we didn't force it. Hospice came in and gave her morphine to keep her compfortable, they are wonderful sensitive people. She passed away peacefully. I really had questioned a living will because of all the horror stories I had heard, but I don't think it is such a bad idea. Then the decison is alreay made before trying times come. I guess I should get one done for myself. Report
Very good point. Although I have let my husband know my wishes with regard to being kept alive with the assistance of a machine, I didn't even think about nutrition and hydration. Report
A great blog........even if it took me back to memories that were not pleasant. We have a living will as should takes alot of guilt away from those that are left to make decisions Report
Along with this blog should be mentioned the "DNR" clause. Do Not Resusitate, sp. These decisions are too hard for me and it would be better if God would come down here and tell me what to do in each case. Report
I'm doing a living will tomorrow! Report
I want a DNR order, honestly. I need to get on that because I'm sure my folks would keep me on machines and such even though I absolutely do not want it at all.

In addition, I'd love it if we could separate Church and State and FINALLY get a law on the books allowing folks to request humane euthanasia for themselves. I think it's atrocious that I can have the vet help my companion animals go with dignity and without pain but cannot receive the same treatment myself. If someone is of sound mind and able to voice their wishes (in any way possible) their bodily autonomy ought to be preserved. We're not all Xians or religious. My atheist self has no qualms with "suicide" in this instance ... I think it's cruel that we make people suffer due to some folks unfounded, unverifiable religious beliefs. Rubbish. Report
As a dietitian in long term care I agree this should be a case by case decision but some homes insist on feeding tubes even though there is NO quality of life or the person is dying of a brain tumor. I have often assisted a family in making a decision by providing information for thier decision. My family already knows my wishes even though like the author I am relatively young and healthy. Great article Report
My mom was in an extended care facility that couldn't/wouldn't put her on IV fluids. She was on inadequate pain medication. What she was on made her nauseous so she wouldn't eat and drink appropriately. It makes me very frustrated that she had to suffer until I got her back into the hospital and on fluids. She rallied and we got some quality time with her although she still wasn't really eating. I would have loved to have had her on supplemental "food" as long as she was also on proper pain medication.

I am haunted by the idea that her death was more because of nausea caused by the wrong sort of pain medication. I would have given anything to get her on tube feedings and IVs before things got dire. Report
I went through this with my mother. I chose to say "no" to tube feeding, because (1) I had heard recent news stories of people dying from being stung to death from the inside by ants, and had already seen ants in my mom's nursing home room and (2) I had listened to other tube patients nearby die from pneumonia after aspirating some of the liquid food, and it didn't seem a very good way to go.

However, the result of choosing a "natural" death by dehydration because she lost the ability to swallow was that she also developed horrible sores on her heels, that ate away her precious flesh to the bone, despite maximum medical care, causing her horrible pain. When they told me she would have tissue damage from lack of nutrition, I did not understand what they were saying. Yes, death from dehydration seems more peaceful and natural, but oh, the guilt I have suffered from the choice I had to make.

Neither way seems good to me. I do not know which to choose for myself, as both ways seem truly terrible.

I wont jump in and state my qualifications and credentials on this subject, just gonna say, it's not all cut and dry. We don't all die at the end of a long illness or just stop thriving. In a trauma setting, some of the wishes you documented might not fit the mechanism of your accident. That said, as above, the 5 Wishes booklet is something we should all have/read.
If I'm am very lucky, my s.o.(also my DPOA) will be at my side in the ER. He's about as experienced in Trauma and their outcomes as a person can be.
Great article, anyway. Report
After facing some hard times the last few years, I have come to realize how important a living will is, as well as having talked to family about what to do when certain situations arise. As the author mentioned, it is difficult to plan for everything at stages in ones life. However, with an open discussion about care when the time comes can at least provide some help and guidance for those making the decisions. If nothing else, at least those making the decisions will know that they are doing as requested if it has been talked about. As far as artificial nutrition and hydration, I believe that is a case-by-case decision. One would not want someone to continue living a life where they are in pain or suffering because the artificial nutrition and hydration is simply keeping them alive. However, if it is going to better the person long term, then yes, it is probably going to be a good idea. Everyone needs to think about having a living will, or at least talking about what should be done in situations that can arise. Report
As a registered nurse, I urge everyone here, no matter what your age, to create an advance directive. I think most, if not all, states have forms. Discuss it with your doctor, make your deicisions then discuss it with your family and make sure they understand this is what you want.

I've seen too many families reverse decisions made by a patient when they became unable to validate their wishes.

It's difficult, very difficult for families, but remember it's not about you. It's about the loved one and his or her own choice. Make your own choice known, too.

Don't wait until you're old or sick. Accidents can happen at any age. Make your wishes known. Report
I have an advanced directive and living will. Lately, I have been considering revising it, or at least reviewing it given the medical and scientific advances that can improve quality of life. I am certain I will now. Thank you for sharing about such an important issue. I am looking things differently, as I have never considered hydration and nutrition as temporary measures. I now see that in some instances they would be something I would want, and in others no way.
Looks like I have some reflecting to do. Report
I have no family but was able to place my end of life wishes with my primary care physician. Most HMOs have forms available with these instructions clearly defined. They can then be placed in your file. Report
A living is a must for everyone. It would make it easier on the family to make decisions. Report
As a nurse, I see this every day on the wards. And, unfortunately, at the age of 48, I had to make those decisions for my husband when he became terminal with his cancer. But I insisted on sitting down with him before he became terminal and have everything put in writing. It was a lot easier to make decisions for him after that when he could no longer make those decisions.
I personally have a living will, advanced directive, medical power of attorney, everything in writing as to what my wishes are should I become unable to answer those questions myself. And I have a supportive sister-in-law that is my power of attorney as well as executor of my estate. So everything for me is taken care of.
I would like to go one step further, if I may. Try to preplan whatever funeral arrangements you would like to have done so the family doesn't have to deal with that on top of everything else. I did that for my husband and it was a relief to not have to deal with that when he passed. Report
I agree that making your own wishes known in writing is really the best way. Make sure your choices are INFORMED. I don't know that withholding hydration is humane, but I do not have enough information myself for that one. I have seen elderly suffer with bladder infections from dehydration. My dad passed away in a nursing home last year and although he would not eat, he would still take ice chips for comfort. He was on hospice so there was no IV, just pain meds for comfort, as was his wish for no heroics such as CPR or vents. A difficult decision but made much easier while people are still healthy. Report
I know hard it to to have to make this decision. I had to do this with my own grandmother as I held the Medical Power of Attorney for her, in 2001. I have also managed to get my mother to get her will and a living will done. But after reading about your sister in law at the age of 20, I now know that I have to get my own done. My husband, son and I have spoken about this, but it will easier on the family if it is in writing. Thank you for this blog. Report
I work in a long-term care facility and I have thought about this often.

I have told my family that if I can physically ask for a drink or food then give it to me, but if I can't then don't.

I want comfort measures only in my last days. No antibiotics, no heroics, but if I am in pain, I want pain killers. Most are not in pain, when they die. Report
I think a living will is a great way of speaking when you can't speak!

'Tis a great blog you have done. My father and I had this conversation and everything was decided before hand. So as his cancer over took him I was able to, with great authority, follow through with his wishes.
I have in place a written end of life play book. It was easy for me to do, I have slipped by the Reaper several times. I absolutely took artificial life and any and all methods of feeding and or hydration from being an option. I also have had this talk with several different people named as overseer of me in a sequential manner in case one of them might be out of pocket or otherwise unable to perform this duty. I took time to discuss this with each of them and got their approval of the responsibility of this duty.
I have copies in both vehicles and at home in a fire safe.
I also have a DVD with me verbally consenting these wishes, I included my humor on the subject and made it light hearted to hopefully set them at ease with my passing. There are 5 copies of it in various safe keeping places.
We shall all pass and doing this takes any and all worries off my mind. So with this handled and my keeping peace with God, all is taken care of.
In these twisted times of government requirements it is a responsible thing to do for your loved ones so they have no burden of guilt to worry over. Report
Thank you for this very helpful blog. It brings back memories of my mother's death. She did not have a Health Care Proxy. She thought it would be easier for me. It wasn't! She love me deeply & didn't want me to feel "guilty" or "pressured" to take care of her. It was very difficult to get information from the hospital when she became terminally ill. Thank God for the hospice team that was brought in. I did decide to end her feeding tubes. As she kept pulling them out anyway. She was ready to go & she wanted to go on her terms. Rest in peace dear mom. Report
I have a living will and believe I've made my wishes clear to my children. My parents had different type of directive in South Dakota but it was pretty clear what they wanted. Which was a relief when the time came. Report
My grandmother also succumbed to Alzheimers and had a feeding tube through her stomach in the last days. It would have been more merciful to let her transition peacefully without all those tubes. My stepmother had a DNR and at the doctor's advice was taken off dialysis and her body gradually shut down. I think it's best to have a living will or DNR because if there's no chance of recovery, it's best on the patient to peacefully pass on. It may be hard on those remaining but in time they'll come to appreciate that their loved one had a peaceful transition. Report
Nicely written informative article. My husband (of 55 years) and I have had Living Wills for 20 years or more. We feel very strongly about not being kept alive on artificial means. This way, our kids do not have to make that decision. Report
Five weeks ago, I had to make the same decision about my mother who also had Alzheimer's. I, along with hospice, felt it was better to with hold nutrition and hydration in her condition and let her go. It was a difficult decision but I think the right one in this situation. Report
My parents have addressed this isuue in a living will. My husband and I have not dealt with this issue in our will but it is definitely something to consider. Thank you for addressing it. Report
This is probably cliche, but my husband and I have both agreed we would follow the Church's guidance (Roman Catholic). People with more insight into morals have been debating these issues for decades, and update their views as new technology become common. We have looked over the position on the major issues and find credit in the positions proposed. Also, we don't want our emotions, which will be sorely taxed in such situations, to cause us to make a decision we would later regret. Report