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

1SHARES

By: , SparkPeople Blogger
8/27/2009 6:24 AM   :  183 comments   :  20,298 Views

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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Comments

  • 133
    My husband and I have talked about this off and on over the past years (we are in our 40s). I need to bring this discussion to action, so that we can have closure on what we want to do. Thanks for reminding me of how important these life (and death) decisions are. - 8/31/2009   2:31:18 PM
  • 132
    My husband have had "making a living will and a death file" on our to-do list for quite a while. I'll have to add this aspect to our discussion as well. Oh yeah, and we need to actually HAVE the full discussion and make our death files. We're both young and moderately healthy. But one or even both of us could still die at any time. So there's no point in putting it off! - 8/31/2009   12:00:37 PM
  • 131
    I really have to get the living will written!!! - 8/31/2009   11:59:57 AM
  • 130
    I know that not giving fluids can cause much discomfort. I would not want my life prolonged but I dont want pain from dehydration either. - 8/31/2009   10:41:47 AM
  • SKYMOM101
    129
    For sure, make certain to have a Living Will so that your family knows what your wishes are! I know that I wouldn't want to be kept alive if I had no quality of life. Donating organs is a way to have something positive come out of great sadness. - 8/31/2009   9:00:27 AM
  • 128
    N/G tube for a maximum of 30 days is fine with me if there should ever be a time when my throat muscles don't work....I've seen the miracles that my speech therapist can preform...I'd give him 30 days to help me...
    NEVER a permanent g-tube for me.

    I took the burden of decision away from my loving son.
    I have a living will....

    T. - 8/31/2009   7:57:49 AM
  • AROBERT412
    127
    I made this choice when I was 21. I will not be kept alive if there is no possibility of recovery with a QUALITY life. I was faced with this decision when my brother at 12 was hospitalized and put into the intensive care unit. His injuries were such that if he had ever been able to recover he would have had such severe brain damage that he would have been a vegetable, 1 week after trauma he was essentially brain dead and unable to even breathe on his own. I have never doubted for a single moment that we as a family made the right decision, we also chose organ donation which was such a blessing for us to be able to give to others in our time of loss and grief. Knowing how it feels having to choose whether or not to "pull the plug" I will never leave this to my family. I encourage everyone at ANY age to think about this, regardless of your choices it is so important to make your choices know and to put them in writing. I have had a living will, advanced directives, and organ donation request in place since I was 25. i have personally never even considered what a Dr or Nurse may think of me in the future or thought of me in the past. Knowing I did what was right for my brother and will do for myself are the only things I have or will ever consider important to me. - 8/30/2009   10:54:15 PM
  • 126
    I had to make this decision when my Mom was at the end of her battle with terminal cancer. It was one of the most difficult decisions I ever faced, but in the end I know she wanted to be at home and to have peace and dignity that she deserved. - 8/30/2009   10:12:31 PM
  • 125
    My dad died of complications from early-onset Alzheimer's and a fall. When it became clear that he would never recover from the brain damage from the fall, my mom and I had to make those decisions. We finally told them to stop the hydration and he died a few days later. It was awful to give the order, knowing it would kill him, but he was suffering and had no chance of recovery. It's horrible to contemplate. - 8/30/2009   7:42:35 PM
  • JOANINNC
    124
    Thank you so much for writing this! I have stage III-C (out of a possible IV) ovarian cancer. I am doing pretty well right now, but chances are that I and/or my family will face these decisions at some point in my disease. I *crave* articles like this, ones that discuss the tough issues with honesty but also with compassion. I want to KNOW what I am likely to face during the latter stages of my cancer, and I am very grateful to find such information. Thanks again! - 8/30/2009   7:25:07 PM
  • 123
    Ok let me just say that my comment was not intended for those who have been in "prolonged" vegetative states as in longer than a month and those who are progressive in age. Still I think you shouldn't starve a person it just creates more discomfort disease processes will do that for you. - 8/30/2009   9:50:33 AM
  • 122
    When my mother was at the end of her life (at 90) suffering from dementia, the nursing home she was in would not allow us to make that decision. My mother was always very fastidious about her looks. My parents were blue collar, hard working people. Money was never plentiful but my mother always made sure her hair was curled and in place, her clothes were always clean and fit properly. I was at the nursing home at least once and most days twice a day. I would stop on my way to work to give her a bath, get her dressed, and sit with her while she ate her breakfast. I would some days stop back in the evening. Being a small woman, it was not always easy to find "grandmotherly" looking clothes in her size and what would fit her I usually would have to buy from a higher priced shop in the area. She had a fairly good appetite until about 4 months before she died when she began having problems eating regular food and they began serving her pureed food. Since she hated the taste of the pureed food, she began refusing to eat it. The nursing home had decided that she needed to weigh 15 # more than her normal weight for most of her 90 years (which she was still maintaining). So after I would leave for work, they would attempt to force feed her to bring her up to that weight. Instead of looking into regular foods that she liked (oatmeal, pudding, etc.), they tried force feeding her the pureed meats and vegetables. I would come back in the evening and find her with pureed food caked to the front of her clothes. She would point to it and cry. When I complained and demanded that they quit force feeding her, I would come and find her in someone else's clothes that were at least 3 sized too big still caked with food. Their excuse was that they felt I was upset about the clothes (I took all her clothes home to be washed) so they just changed her into some clothes from their 'closet' after I left. I fought tooth and nail to get this changed, I could care less about the clothes, it was her dignity that I cared about. If I had had to wash her whole wardrobe every evening that would have been fine by me, it was seeing her being forced to eat when she did not want to and to see her look that way and seeing her crying. Why would professionals feel that the patient's feelings did not matter? She was never going to get well, she had lived a very long and very good life. She was never going to have any quality of life. She was never afraid to meet her maker. It was her decision to move into a nursing home because she refused to be a burden to anyone. Yet they made the last several months of her life a living hell for her. To force her to live like that was cruel, any nurse that thinks you're an asshole because you want your mother to die with the same dignity that she lived with needs to find a new profession. I still cry when I think about it. - 8/30/2009   9:41:09 AM
  • 121
    As a health care worker, knowing that those are in end of life or "terminal" whatever disease process they have will eventually be enough to kill them. To starve them and keep them thirsty when they may or may not be aware of what is going on is cruel. This shuts the body down faster, granted, but makes the person suffer needlessly. People who do this probably have no idea of what is to be done clinically and I would think they would at least do a little research for their loved ones benefit. Also, to be honest most hospitals don't have the resources to keep someone for a prolonged time, so they try everything in their power to convince you to "let go" I have seen plenty of people bounce back who were, "end of life" and have good quality of life later. Also the nurses will think your an asshole if you take it away also. They usually have a heart unlike the doctors. - 8/30/2009   9:41:09 AM
  • 120
    We have a living will, and so did my mom when she passed away. It was a blessing for me since I was the one who had to make the decisions, I don't know if I could have done that without her help. My dad also has one. They state that we are to have hydration and nutrition only for the comfort of our bodies and not to just keep us alive. I wouldn't want anyone else to have the burden of making that decision for me when my time comes, it's too hard. - 8/30/2009   4:18:18 AM
  • _MAOMAO_
    119
    Having over 8 years experience as a cardiac telemetry technician, I've been around many folks who are clearly very close to the end of their lives.There's nothing nurses and doctors like less than doing CPR on someone who's just going to live a few more days b/c of their efforts. Such a patient is going to be in pain directly d/t the CPR for those last few days, pain that's super-imposed on top of suffering that was already present.

    I only want IV hydration or nutrition as long as there seems to be a reasonable chance of recovery. If I'm just comatose, feed and hydrate and talk to me all the time! If I'm clearly not having brain activity, I do not want to be kept alive by fluids and nutrients any more than I want to kept alive by machines.

    There are times and cases where the delineation b/w active and vegetative states are not so clear. This is all the more reason, though, to have made one's wishes clear, in writing and to one's close family and decision-makers. I'm embarrassed to say that I own a POA/will/living trust package and haven't completed the documents.

    Thank you for writing this blog! - 8/30/2009   1:20:47 AM
  • BIJOUX7
    118
    My father died of cancer 15 years ago. He had the death HE wanted: at home, no tubes and machines. He had a feeding tube implanted several months before his death- the week before he died he pulled it out and said enough is enough. Between the time the tube came out and his death he ate and drank very little. We respected his wishes by keeping his mouth clean and moist with ice chips and administering pain medication. He died at peace, pain free surrounded by his family with his beloved Irish setter laying next to him. This is how I would like to go- I've written out my wishes and given them to my family. - 8/29/2009   10:24:48 PM
  • 117
    As Chaplain in an Intensive Care Unit, the most loving thing you can do for your family is put your wishes in writing. You can, and should , review your wishes regularly. And change them when appropriate. When you have young children, you may wish to be kept alive at all cost. Or the idea of their university funds (if you live in the USA) being used to keep you alive an additional few months and denying them an education, may cause you to decide otherwise. Putting it in writing means that your children won't end up at odds, fighting over what you wanted. Putting it in writing relieves the decision maker of feelings of guilt or anxiety. Putting it in writing means that your wishes will be respected. There is no right or wrong answer. Different people have different values, different concepts of life and death. And those differences can exist between siblings or spouses. Loving means letting them know how you would choose to leave them, when the time comes and if you are not able to voice your decision. - 8/29/2009   8:06:26 PM
  • 116
    Back in the 1980s my 96-year-old Grandmother died in her bed in our house, quietly, peacefully, clearly without suffering, and without life support systems. She slipped into unconsciousness after days of quietly rejecting food and water with a quiet smile. It was hard to watch her go that way, even though our family doctor who made daily calls (rare, very rare, even then; impossible to imagine now!) said she was doing 'exactly what she should be doing; she's dying. We all will.' We weren't really sure exactly when she did die; it happened very gradually. As hard as it was to watch and know we were helpless to change the outcome, having in the years since attended at the technological death beds of any number of folk, friend and stranger, I can say--I want to die like Grandma did. It is how we were meant to die. She accepted her life's ending and met it peaceably. (So unlike her niece, who, several years ago being admitted to hospice, also at 96, complained, 'why me?' Clearly, she didn't accept her own mortality.) - 8/29/2009   2:12:50 PM
  • 115
    On Friday the 21st, I lost my Grandfather because he didn't want the tube, and wound up starving. He complained, to my brother, that he hadn't eaten in 5 days on that Wednesday. He was 92, and had lived a good long full life. - 8/29/2009   11:28:53 AM
  • 114
    I do have an Advance Medical Directive and Durable Power of Attorney in place. However, I don't think this particular issue is adequately covered. Thanks for the discussion. I will certainly pray over this matter, research it, and make appropriate changes to my DPA. I don't want to add to my family's burden when they are already under unusal stress. - 8/29/2009   10:21:18 AM
  • MICKYSMOM13
    113
    I believe that end-of-life nutrition and hydration is only prolonging the inevitable. We, in this country, seem to think we will live forever. We start to die the moment we are born, and we need to make the most of the time we have. I do believe that measures should be taken when there is a possiblity of recovery, but when you are facing the last of a terminal disease, let go and accept the inevitable.
    I was lucky when my mother's kidneys started to shut down, because she was still fully functioning, and able to tell the doctor that she did not want any treatment. However, we had discussed this type of situation previously, and she made her wishes known. We were able to say goodby, and she was able to stay in the assisted-living facility where she had lived, and would die. All the people there knew her, and loved her. We did not want her to go into a hospital, where she was just another diagnosis. - 8/29/2009   9:36:20 AM
  • 112
    This article sure hit home. I recently lost my Mother - she was 86 and had dementia, diabetes, congestive heart failure and a host of other medical issues. Forftunately, she had a living will and advanced directives, so when she became unresponsive, I knew her wishes. I also have a living will and advanced directives and I believe that when someone is faced with that decision, you will be given enough information from the medical staff to know the right decision to be made. - 8/29/2009   7:54:17 AM
  • AJCOELHO
    111
    A great blog. A subject nobody wants to talk about. My husband and I both have living wills. If I had to make a decision for a family member, I would not be able to withhold food and drink. I would think that I was starving a loved one. However, I do not want to be fed or hydrated if I am in the final stages of my life. - 8/29/2009   1:17:37 AM
  • 110
    I never thought too much about it until my mother was unconscious in the hospital and the doctor took my sister and I aside and explained that she wasn't in pain and IF she woke up she most likely would be and she wouldn't know anyone, that she had severe brain injury from a lack of oxygen. (She had gotten out of bed during the night and when she was found on the floor they put her back in bed and on a ventilator). She had a living will and didn't want to be kept alive by artificial means. I'm glad they put her on it so I could get there while she was alive and say good bye, but it also made it easier to say - "ok, she didn't want this take her off". We discussed it between ourselves, and explained and discussed it with Dad - all agreed to take her off and she died a few hours later. It just made it easier. All this occurred in March. I just picked up my will and living will to make it easier if it comes to it for my children. - 8/28/2009   10:58:22 PM
  • 109
    My Husband and both have a living will. We didn't want to burden the children with that decision. - 8/28/2009   10:30:08 PM
  • 108
    No, I do not have a living will or advance directive. I have thought of ask family members about artificial support and nutrition, but I would be uncomfortable because of lack open comunicative relationships, and lack of closeness. The one person I will definately talk to about it is my husband and maybe my oldest son. As for my parents I will try to develope a closer relationship first. Perhaps one of my siblings has had that talk with them - I will check. I'm afraid my folks would think that we're expecting them to become terminally ill or looking forward to it. How do you be tactful with sensitive people about such an issue.

    Some one commented that their elderly sick relative was only given nurishment when they asked, but the ability to ask was diminishing and there were less lucid moments. If those conditions were present in baby (illness, can't talk, limited 'awareness'...) would anyone even consider not nurishing the patient?

    Another commented ...even if I was brain dead, who says my life force is in my brain?

    A very thought provoking read. - 8/28/2009   7:18:04 PM
  • CHICKFORCHRIST
    107
    Yes, I do have a living will. I think as a parent it is a necessity. You never know when something could happen and then what would happen to your kids. If they are under the age to receive the money, you need to be sure you have an executor you can trust to take care of your kids with the money you leave. - 8/28/2009   6:19:54 PM
  • 106
    My father was fit until he was 86 when a sudden illness put him into hospital. We had never discussed his wishes, but he was suddenly too ill and officially "confused". The nurses persisted in bringing him meals even though he was unable and unwilling to eat them. This caused him great stress.

    It was only when I managed to get him into a hospice that the staff explained why we should let him refuse food and drink. It was a hard thing to do, but the right thing. He died peacefully a few days after entering the hospice. - 8/28/2009   4:38:05 PM
  • 105
    Yes I will. - 8/28/2009   4:14:53 PM
  • 104
    I had to help make this decision about my mother and it was the hardest thing I ever had to do. Fortunately for my siblings and myself when Dad ended up in the hospital he took that decision from us by immediately telling the doctors what he wanted. He passed 12 hours later. I have since made my wishes known on paper as well as verbally so my loved ones do not have to go through the decision making process when my time comes. Something every one should do. Take it from someone who has been on both sides.
    - 8/28/2009   3:39:54 PM
  • 103
    What a timely topic. My husband has some possible life limiting health issues. We've been talking about advance directives, living wills and even making the funeral arrangements so when the time comes it'll be easier on his loved ones. No one likes to do these things but seems like it'd be comforting to have them done. Preplanning also gives one peace knowing the arrangements are completed and gives the one with compromised health control over these issues. I know what my husband wants but it will be hard to follow through because my instinct is to save him at all costs and he doesn't want to be revived if he'll be in a vegetative state. One part of life that is so necessary to do but oh, so hard to think about because we never want to let go of those we love.

    Deb - 8/28/2009   2:51:09 PM
  • 102
    My Father's doctor absolutely would not withold food or fluids. But I am glad I did not have to make that decision. It would be a tough one for me. My Father passed within a few short hours anyway. - 8/28/2009   2:30:39 PM
  • 101
    I do believe it is our God-given "right" to choose how and when we choose to live and/or die. Natural consequences follow our choices as well as perceived or believed consequences. That being said, I would want all possible methods to be used to prolong my life as long as there is an ounce of possible quality available. Even if I were to go into a vegetative state and there is no longer any brain function who's to say that my life force is in my brain. - 8/28/2009   2:17:52 PM
  • 100
    My husband and I have had this discussion and do have advanced directives etc. As a nurse I have always had a sense of the importance of an individual having the chance (responcibility) to make these choices. That being said, these are very difficult decisions to make. I have had the life experience to have seen my parents and more recently my MIL go through illness that brought this home. MIL had ALS...we watched her fail and she had been fairly insistant that she didn't want to go through a lot of medical interventions that wouldn't help her in the end...since she couldn't safely swallow though and since poor nutrition was an accelerant to her diminishing muscle function we needed to make the decision to have a feeding tube placed. I feel that this was the right decision in this case as she was able to have at least 6 months that she would not have had to say her good byes and her cognition was great right until the end. Each case is so individual that it will never be an easy thing. - 8/28/2009   1:54:20 PM
  • 99
    I totally agree with the words of the hospice nurse...who said the following:
    if a person is truly at the end of their life, their body makes the best decisions in the shutting down process and will stop taking food or fluid. forcing either causes physical problems that the person dying with dignity should not have to go through. however, if a person is not going through a natural death, and could possibly survive the physical problem they are having, then allowing nutritional assistance is a possibility. It should never be used to artificially prolong life. just my opinion . . .

    If I were truely in a situation of no recovery, and unable to speak, I would want to be kept comfortable at a hospice with liquids or whatever means..If unconscious no feeding tubes. I would like to just leave things in Gods hands since I trust that He knows what is best for me.

    However if there was any possible of recovery then I would want to be given whatever nutritional means possible.


    - 8/28/2009   1:13:03 PM
  • NOLONGERNUMBER2
    98
    We had to make these decisions for my mother in February. She had Alzheimer's and then suffered a massive stroke. I learned about "5 Wishes" which is a document that is recognized in most states and allows you to, in a very detailed manner, state what you want and do not want if you are in that position. - 8/28/2009   12:24:52 PM
  • 97
    A timely topic and one EVERYONE should read and then make their wishes known to family and friends via a living will. Everyone's wishes are different and should be followed - but you need to know what those wishes are to be fair to them. I lived through this with my grandfather 20 years ago next week. Living wills were not known about at that time and even though we knew what he wanted we were at odds with the doctors. Once the feeding tubes were in we could not get them removed. They were simply prolonging the inevitable and while extending the length of his life by weeks - were not giving him quality of life in any way. It's a hard, hard thing to let your loved ones go but you must not be selfish and do what they want. My grandmother passed away two years ago and she was under hospice care for months and we did everything we could to make her comfortable during that time but she didn't want any extra measures taken to simply prolong her days and not cure her illness. It was again very hard to do but she deserved that choice and she deserved to not be in pain. - 8/28/2009   12:09:39 PM
  • 96
    In my opinion, there is NEVER a good reason to withhold food and water, whether it comes via a tube or not. That is a horrible way to die. With all the pain management techniques the doctors have at their disposal, there is never any reason for someone to be in discomfort. If they are meant to go, their bodies will shut down on their own. Withholding fluids and nutrition is tantamount to murder. - 8/28/2009   11:38:44 AM
  • 95
    It's sometimes difficult to know how to identify what the "end of life" looks like. If it's an elderly person with a serious, incurable disease, it is easier; however, a young person with a brain trauma may not have to die.

    Life is precious and should not be tossed away simply because it gets hard and doesn't turn out the way we'd planned. No one wants to be dependent and helpless--it's very humbling to be needy--but it gives others an opportunity to serve for a change. In my family, we've all had many discussions about our wishes in the event of a tragedy.

    In today's culture, we're hearing a lot of talk about the "quality of life" such that if a person's life is deemed not to have "quality" then it should be ended. I don't want a doctor deciding that for me. I want someone who loves me and values my life to decide that. I don't want to be a burden, but I might be--and so might my husband and so might one of my kids or grandkids. You don't flush a life because it's a burden, or because some third party doesn't find quality or value in it.

    I realize I'm talking about a different matter here than a clear-cut end-of life decision, but sometimes the line is not clear. My sis-in-law died of lung cancer at home, and she just didn't want to eat anymore--so she didn't and we didn't make her. My mom-in-law died in the hospital of a lung disease, and when the tests had been done and the results showed that she had severe fibrosis and would probably have less than 48 hrs. of lucidity before oxygen depletion effected her ability to communicate, she told the doctors that she didn't want to be in pain at the end. He assured her that they could make her comfortable, but that it would shorten her time. She said, then give my my purse and a notebook. She wrote out checks for her last bills, and made a list of instructions for me. Everything else was already done. She passed away 12 hours later. My step-father had been disabled for years and Mom cared for him at home until he began to develop dementia. She finally had to take him to a nursing home--his greatest fear--and during a period of lucidity, Mom told him where he was going. It was no longer safe for her to try to care for him at home. We think he "decided" to be finished, because he was only awake for a few hours after getting settled into his bed in the hospital. Mom stayed with him and fed him dinner, and then he went to sleep. Either she or I was with him round the clock so that, if he woke up, he would know that he wasn't alone. He never woke up, but died four days later. We didn't withhold food or water, but didn't give it via IV, either. He just went to sleep.

    Every case is different and has to be considered differently. It's important to talk with your loved ones about all of these things. Great post--and great discussions! Thanks for opening it up~

    - 8/28/2009   11:33:09 AM
  • 94
    My choice would be to continue hydration, but nothing else if I were in a vegetative state or terminal condition with no quality of life. Thirst is a terrible thing and I think hydration allows for a more comfortable death without extending life. My father also had Alzheimer's - he died of pneumonia after 7 years and we never had to make these difficult decisions for him but my husband and I have prepared living wills and our children know our wishes. It is so important to have these discussions with your family. - 8/28/2009   11:26:10 AM
  • 93
    This is a VERY IMPORTANT blog and I welcome it very much. My mom past away May 21, 2008 in ICU after succumbing to the complications manifested with breast cancer. She was on a ventilator and one by one her body functions were shutting down. It was a perforated bowel that finally did it and at that time we decided enough was enough. After going through that experience my husband and I are currently working on our directives. You just don't know until you go through it.

    THANK YOU for this blog entry. - 8/28/2009   11:04:31 AM
  • 92
    After taking care of my parents for 3 years before they moved into a skilled nursing home my husband and I have the advanced directives, trust and wills. We went to a lawyer that specializes in elder law. My parents told me what they wanted and I followed their wishes. My Mother just passed away on August 14th, she was 90. She died with dignity and knew we all loved her very much. My Father passed away almost 5 years ago, he was 91, and he also died with dignity. Hospice took care of both of my parents near the end of their lives and made them as comfortable as possible.

    I liked what BONESKA wrote in response to this blog. That is the way my parents felt.

    It is really hard to let go of your loved ones but I feel good that I carried out my parents wishes. - 8/28/2009   10:28:15 AM
  • 91
    I have made my only son and daughter-in-law well aware of what I would prefer in case I was no longer able to make those decisions. As I stated in my letter, they are just fulfilling my wishes and should not be made to feel bad by others who disagree. I didn't want them to feel they were pulling the plug.

    I saw my husband's family flounder over health decisions for his parents and it was terrible. My daughter-in-law's mother also recently passed away and I think they are relived to have my directives since she became ill so quickly. - 8/28/2009   10:17:11 AM
  • 90
    These decisions are so difficult because as the blogs author says each situation is different. I have watched both my parents die at home with cancer. It was much faster because neither of them had food or fluids at the end. I think I would choose the same and my husband would as well if as with my parents there was no more hope. If hope remains or should I say possibility for life then my choice wouldbe different and having a living will and durable power of attorney is absolutely essential especially as we age and those who know us well become fewer. - 8/28/2009   10:16:25 AM
  • 89
    Having been a caregiver for the last few years, I have dealt with this issue directly. One of the people I was caring for did pass away 6 months ago. He had an advanced directive thankfully. Nutrition is tough though. And nursing care I have tells me to prolong life as long as possible, but in the end of
    life the body naturally shuts down and doesn't need a lot. For
    us it wasn't until hospice came and assesed him that we realized we were giving him too much fluid. He was eating via
    G-tube at this point, and the diarreah was a direct result of too much fluid he just didn't need at this point. It's hard to
    gauge at what point that is though. Hospice was great , and
    once we were aware of this , we gradually decreased the
    food, and fluids. He died with dignity, and at peace. It's so
    hard to know what to do, but thankfully there are skilled
    professionals that can help you make the right decisions. - 8/28/2009   10:02:10 AM
  • 88
    I am very glad to see a blog like this on this site! Kudoos to you! I am a nurse practitioner who is certified in end of life care. THis is always an issue as my patients near the end of life. Families have a harder time than the patients. It is important to know that almost everyone stops eating at the end of life and it is actually a protective measure your body does to make you more comfortable. When I explain this to families they are more comfortable with the fact that their loved one is not eating anymore. This is a great article. Thank You! - 8/28/2009   10:02:07 AM
  • 87
    Thank you for writing this article and stating what needed to be said. After losing my first husband to a long drawn out illness, and having had to make difficult choices about directives multiple times, I added a letter to my "advance directives" that I sent out to all of the loved ones I'd asked to make a decision on my behalf. It stated in clear words what I wanted. No gobbledygook legal stuff. Just my words. They were along these lines:

    I've always loved food and water, so please don't withhold it. And, please, don't let me be in pain if it can be avoided. But, as for other medication, if I am not myself, and I should develop an infection of some sort, don't treat it. Let it run it's course and take me away. If I am not myself, and I cannot breathe on my own, let me fall asleep and go. And don't pray for forgiveness.... because you are doing what I want you to do. Don't bury me. Just take my ashes and put them in a body of water that will make it to the sea and let my body travel all over the globe while my spirit soars.

    My new husband knows about my wishes. We talked about it while dating. Sadly, I think you don't realize what to do for your loved ones until you've had to make decisions on behalf of others, but thank you for asking us to think about it. I hope this helps others.
    - 8/28/2009   9:55:34 AM
  • 86
    Some very good comments and something that everyone NEEDS to consider even if that time is no where near. My husband and I have been discussing this issues and trying to define what we want but have not come to a full, written choice yet. Also, you need to find out if your parents have taken the step in making these choices in order to know what they want, before they need it.

    Excellent blog...very informative. - 8/28/2009   9:44:59 AM
  • 85
    After a serious accident and a long hospital stay I had a living will made up. I feel very confident now that my choices and desires will be made when I am unable to voice them myself. I highly reccommend it. - 8/28/2009   9:44:30 AM
  • 84
    Thank you for covering this topic. More information on living wills would be a great follow up. I think I agree with blog response 32 - water and food along with pain medications are basic, but I am certain that each individual should make their own decisions. - 8/28/2009   9:39:25 AM

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