Is it morally/ethically/legally permissible to remove food and hydration from an unresponsive late-stage Alzheimer's patient?

Could you clarify what you mean by unresponsive, please?

When people refer to "artificial" feeding, they are usually talking about PEG feeding or tube feeding, which issues tend to arise when the swallowing reflex is impaired. They are not talking about a demented person being assisted to eat puréed food.

I can imagine how emotionally draining it must be to witness your mother's state for four years; and you now have the loss of your father to mourn too. Has anything else changed in your mother's condition?

I'm sorry you're in this dilemma, Tnekver62. After being my mom's live-in caregiver till she died in April, I changed my advance directive (living will) to specifically state if I'm in final stages of Alzheimers and dementia to stop all artificial means of keeping me alive, including nutrition and hydration. I mean it! I would hope someone would implement it.

I'd show the living will to and speak with your mother's nursing home DON (Director of Nursing) and her doctor if she's to the point she mentioned in her directive. They can give you advice. Although you're a minister yourself, you need to talk with another minister or counselor to help guide and support you too.

Even though it's her wish and I know it would be a kindness to let her go, I can't imagine the impact on you. I can't imagine how traumatic it would be to actually implement it. It would be hard, but I'd do it.

As for morality, what's better FOR HER: implement her instructions and let her go or make her continue this way, possibly for years? Best wishes to you.

being able to tolerate food and fluids by mouth even if puréed or thickened is not the same as artificially extending life

is mom awake and willingly accepting nutrition but non-verbal?

my 95 year old mom has been immobile for 1 1/2 years and uses both purée and finely chopped soft food and is hand fed most of the time

I’ve seen many late stage dementia patients refuse food at the end and some families opt for feeding tubes which artificially extends life - is this where your mom is?

If she is not fed, does she seem to look for food? Does she indicate she is thirsty- ever? If my loved one seemed to want to eat, I would continue to feed her.

My sister died of a brain tumor. She became unable to communicate with us in any way. Towards the end of her life she just did not want to eat anymore, so we let her stop eating. Then it became difficult to swallow and although she did not seem uncomfortable, the family tried to continue to give her liquids. Eventually, we settled for swabbing her mouth and using eye drops. We just wanted her to be comfortable.

In nature, animals that are dying do not eat or drink. I don't think they are in distress. I think the body knows what it needs to do. Have you consulted a palliative care group? They could probably help you with your decisions.

I cared for my mom in my home. She didn't talk for about a year before she passed. We fed her soft foods by hand and offered drinks, water, coffee(mixed with ensure) and ensure. We had decided early on no feeding tube, but I could not just not offer her food. Personal choice. She ate less and less. Then swallowing started being a challenge. Finally she just couldn't eat or drink. She went 8 days without food or water and finally took her last breath in April. I stayed with her those final days and was lucky to be holding her hand when she passed... Something I promised her. It was very peaceful. I also knew and know where she would be going. I know the Lord welcomed her with opening arms. I did not want any regrets or guilt so whether it was morally the right thing, I can't say, but at least I know I did what I could and helped her as she left this world. I think we each can only do what we feel is best for our loved one. As long as that is what is in your heart as you make the decisions, then it is morally right.

I struggled with this when my mother no longer had any appetite or motivation to feed herself, since she eas solely in my care it would have been simple to withhold food and hasten her end.
Instead I made the decision that as long as she opened her mouth when I offered food I would continue to feed her and I know in my heart it was the right choice, if she had ever actually refused to open up and eat l would have honoured that.

They refused to hydrate my mother when she was in hospice. I didn't know that was part of the agreement or I would have never signed as her medical POA; they made it sound so good; she'd get all this extra attention - but if anything, she received less care; the nursing home and hospice seemed to assume the other was doing something for her, but neither were paying attention. I wanted them to hydrate her. They said it can cause problems in people with lung conditions. My mother didn't have a fluid problem, though.

Is mom on hospice care? I would assume so. If yes, you will find support there, they will have a chaplin. If not, get mom evaluated today, she will receive great comfort and support as you and family will.

It may not be the legal definition of “artificial” feeding, but to me it has meant a feeding tube, not hand feeding. You mentioned “removing” food and hydration, not that she is refusing it. Am I understanding that you’re contemplating actually withholding (removing) food? If and when my Mom gets to the point of these decisions, I could not decide to “withhold” it, but would offer it until she refused. So when she eventually refuses consistently, it will be her decision, not mine. So refusing vs removing/withholding are 2 different scenarios in my mind. Have you clarifed in your mind the differences, if any to you, and what “artificial” means to you and your Mom?

Thank you you for bringing up this hard topic, as it helped me think through my own plan.

When someone is very ill, constipation can be a problem. They don't want to eat, have little appetite, and it can be very painful. It is sad that you were not made aware when she signed her medical power of attorney and living will as you could have discussed various options with her. A PICC line and a direct feeding to go through the stomach or chest wall versus down the nose wow slightly more invasive are much more comfortable for the patient. if she has seen or experienced problems with IVs, Ivy's feeling, people getting feeding tubes through the nose and down the back of the throat often requiring sedation or being restrained so they don't pull the feeding tube out this could have prompted her decision for not having these extraordinary measures. do you know her frame of mind and what guidance she died when this decision was made.
Many people and some have made the decision for no feeding tubes or IV fluids. Straight Ensure or similar drinks can be very hard on the stomach, in my personal experience. Diluting then with milk, ice, or Silk can help a lot.

My friend who allowed oxygen, thickened water to aid in swallowing, ice chips, even sucking on a soaked wet rag, helps with hydration. Biotene gel, again in my personal experience works 10 times better than the mouth gel hospitals and NHs use.

Offer small amounts of food frequently. If feasible, help her do passive exercises, a PT can guide you on this, as it will help her digestive tract. Even 'empty calories' of candy, small shavings of fudge, etc, are calories. Again dilute & offer small amount frequently, then let her rest.
Asit sounds like she is Not refusing pain meds, having something on her stomach is really important to her comfort and ability to tolerate the pain medication. Anything to help her metabolism, like stool softeners, if she can swallow them, or Miralax in her favorite flavor of fluids should be a regular part of her routine, to help her be more comfortable.

Gently discuss that this is why you are offerering these items, for her comfort! If she refused, let her rest, address any mouth dryness or digestive issues, and offer again.

Finally my Mom had signed a DNR if there was no reasonable chance of recovery, and didn't want a feeding tube. Dad was in denial and while most hospitals had it on file, she was at a new hospital for her final heart attack. He never remembered to bring in the paperwork. He was a Christian and a lawyer, for what that says. Who is gonna sue him, us kids, Mom if she lives? Dad was competant, so the alternate POA could not override him, just talk to him.
I was there when a very self empowered and aggressive RN pinned her down while the other forced the feeding tube down through her nose. She was on blood thinners and vigerously resisted. They over inserted the tube and had to back it out 1/3 after an x-ray. She had acesties, and bleed easily from her esophagus. The blood flowed into her lungs causing acute pneumonia. This extra pressure on her heart and lungs killed her.

So be present, and insist on observing her care, feedings, and any procedures. The rest is prayer, and put it in God's hands.

Simple advice: If there is something you can do about it today, that is your job...like posting here for guidance. If not, for today, it is God's job! Leave it in his hands.
May Our Lord's Wisdom be with you!

My heart goes out to you I lost my Mom to dementia in the last week I understand completely as my Mom did not want to eat or drink and when she was in hospital she would not have anything it is so distressing.
I just wanted to make sure that she ate but really she had just had enough and its your Moms decision. I do not think food should be removed though just try to give her a little bit

I may be repeating what some others have said but I think defining "artificial" is what is important. Babies thrive on pureed foods being hand fed so I cannot imagine in good conscience discontinuing that as long as your mother swallows. A feeding tube, surgically implanted however, would seem somewhat artificial to me (not that I'm judging anyone if that's the route that they go).

My heart really goes out to you in your situation. Life is full of difficult decisions. May the Lord guide you and give you peace.

I hope that you can figure this out for you and find peace in your heart when you do come to the "right" conclusion for you.

Personally---I would wonder what kind of QOL she has? Unresponsive? So she is unaware that anyone is there? And she's not "getting better"....just...alive.

I am SO grateful that I have made my EOL decisions so clearly with my children. I do not want "life" at the cost of no dignity and simply existing. But that's me.

Asking if it's 'moral, ethical, permissible' to take away food and hydration? In my opinion--keeping her alive, simply alive with no hope for better days ahead---is not moral nor ethical. It's a fine line--and we all look at this differently. We all have different moral compasses. I would personally not keep my own mother in that state for long. We did not keep daddy in that state for long, either.

I am glad for you that you have your faith to sustain you. I don't fear dying and l personally hope to not outlive my "sell by" date. This is why we entrust our most trusted family/friends to be in charge of EOL for us.

Ask yourself what mom really wants? Sounds like her will was pretty certain she wouldn't want to be kept alive like this--but it's your call.

I scanned the posts, so sorry if this has been said.

When we start the dying process, our bodies start to shut down. First thing is we can't swallow. We no longer feel thirst or hunger. If they try to feed you, the body can no longer absorb nutrients so feeding doesn't help. My daughter is an RN in a rehab/NH facility. She told me to never allow a feeding tube for my 89 year old Mom with Dementia. Better to allow nature to takes its course. If a tube is put in, its hard to get it removed. Because the medical field feels you now are starving the person.

If you don't have hospice, have them come in and evaluate Mom. They can tell you if her time is coming. Really, do you want to prolong her life. She left a long time ago. Her soul is just waiting to be released. Its hanging by a thread. Hospice does not withhold if the person still wants to eat and drink. They just won't force feeding. Mom will be kept comfortable and pain free. Two weeks before Mom passed she closed her eyes. Could respond to people talking and she was taken to the common area during the day. Then, she couldn't swallow. Then she wouldn't get out of bed. I chose Hospice to come in. My daughter checked Mom out and agreed. She passed six days later. Miss her, yes the person she was, not what she had become. My Mom knew she would go to heaven so I am at peace.

Wow, so glad I found this forum. Thanks for all the kindness, encouragement, and counsel.

update: Mom is not refusing food, but is hand fed specially prepared food as her swallowing is impaired.

Your comments and my further searches haves helped me to determine that “artificial” likely means a “feeding tube.” Her advanced directive would refuse both a feeding tube and any IVs for hydration.

So long as she still accepts hand fed food, I will ensure she has the opportunity to eat. If she refuses at any meal that is her choice, and I will instruct the caregivers to honor her disposition, and not overly encourage, or force her to eat.

Thanks for you help.
Grace & Peace
Tnekver62

Generally speaking, extraordinary measures for food and hydration do not include pureed food. Is she being fed intravenously? I would personally not participate in that based on my own views. If she is not terminal, and she just has to have her food pureed, I could not in good conscience starve my mom. Pureeing food is not at all artificial. Eating is never artificial. TO be honest, what I want now when I am lucid, may not be what I want later when I cannot speak up. I would prefer to err on the side of life. You have to decide what you can live with and seek the scriptures for what you believe God wants you to do. But the only cases I know where starvation was allowed by courts were far more assisted than what you list here.

I know where you are...my Husband was 12 years with Alzheimer's and the last 5 or so was non verbal.
If your Mom is not on Hospice you should make a call I think they would help you a lot.
If the person is not eating or drinking to give them food or fluids can cause more harm than good. If she is still eating the pureed food and drinking thickened fluids then continue on. Once she stops eating, she closes her mouth and no longer responds to the cues to open her mouth then you know it is her wish not to eat. You can try a few more times but don't force it.
In the last stages of life the body does not process food or fluids, it does not need the food or fluids. Since the body is not processing any food given may just sit in the stomach or gut and begin to decompose causing pain.
As a person is "Actively Dying" the body is doing 2 things it is keeping the heart beating and the the lungs breathing. Even those 2 tasks are difficult and you may see or hear that the breathing stops, heart bet becomes irregular or very slow.
Since the body does not use the food the person will not show signs of hunger. Fluids can be used with a swab to keep the mouth moist but to give someone something to drink may cause fluids to enter the lungs creating a bigger problem.

At this point keep your loved one comfortable, hold their hand, tell them that you love them. tell them that you will be alright, the family will be alright and give them permission to go.

I was exactly in your place about a week and a half ago my husband went into a semi coma and was in the hospital for pneumonia actually it was aspiration pneumonia I watched him just lie there struggling to breathe . We opted for hospice care. He passed 26 hours later. I never regretted my choice. We were surrounded by the caring angels of hospice,our parish priest, and loving family. My prayers go with you and your family during this difficult time.

Matt25:35 if your parent is hungry or thirsty, and takes food/drink when offered, then they want it. Give it to her for her comfort. This is the Christian guideline.

As you're a minister you are well equipped to make moral / ethical decisions. Also you must know that some matters may not be entirely black or white. You imply that your mother was a spiritual person so she too must have thought through the morality of her end-of-life decisions. Her last wishes, however, do not have to be honored if you believe they were flawed. You are the one who has to make a deternination as to the rightness of her request. What would you counsel a member of your congregation? Personally I would have a hard time accepting not allowing hydration. To me that is too much like assisted suicide but that is my perspective and I know that other Christians have different views. What do the doctors say? How long is she likely to live with hydration alone? I know how difficult such a decision is; you will get different answers on this forum and not all from the same ethical / moral perspective. Give it thought and prayer before making a decision.

My mom who had Parkinson's disease and developed aspirated pneumonia had made a Living Will and we had discussed her end-of-life desires. She was a wonderful Christian lady who had complete peace about her future eternal life. When she was taken to the hospital ER due to her pneumonia, I was there with her. She began pulling out the IV (giving her medicines and fluids) and even pulling out her catheter. I remember hanging over her and stating: "Mom this is not life support. You have pneumonia and we need to get meds and fluids in you for now." I believe what she was demonstrating was that she'd had enough. I asked the ER doctor to do 2 things for her (and for me). I requested that he get her stable enough to send back to her nursing care facility where she'd be familiar with her surroundings and her fabulous nursing staff. I also asked for him to get hospice ordered ASAP. I told him that my mom was ready to enter eternity and would not want any heroic measures. The ER doctor was very kind and compassionate. He got her a room in the hospital and ordered to have hospice come for their evaluation. Of course, they took her on as a patient. We were able to get Mom back to the nursing care facility (where my dad was living, 2 doors down from her). My dad had the same hospice nurse which was helpful.

Because hospice was ordered, we were able to not "prolong" the inevitable. It didn't mean we were unkind, but it did mean that we did not have a feeding tube or give unnecessary meds or treatments. Hospice was able to provide comfort measures which included swabbing mom's mouth with liquid, keeping her lips moist, and giving her necessary liquid pain medication and/or a pain patch.

My dad was really concerned about Mom not getting food or beverages, but once I explained to him that her body was shutting down and really didn't want or need food and drink, he accepted it and agreed that this was the best for her. (This also became the "story" for my dad in his last days.)

The last meal I served my mom was at the hospital, and even then, she really didn't want the yogurt or pureed foods that I offered. She was tired, and she knew her earthly life was coming to and end. (Your mom may also feel this way, and may make it very clear to you that she doesn't want food or drink.)

So, in my feeble attempts, I'm trying to say that if you haven't considered getting hospice on board, now is a good time. Hospice groups do vary, and you may need to do a little research first. The one we chose had wonderful, godly people who shared our view of earthly life and eternal life. The nurses, the Social worker, and even the chaplain were so helpful and supportive of this difficult time in our family's journey. I can never say enough words of praise and gratitude for these saints who traveled with us and guided us down this path.

I will pray that God gives you His peace (John 14:27); His wisdom (that He promises, James 1:5); and His comfort (2 Corinthians 1:3-4). I look forward to meeting you, your mom, your dad and introducing you to my mom and dad!

How can you be uncertain if you have her living will. Are you sure that you read it right? My living will states that I do not want any artificial means to prolong my life but that I do wish to be given pain management and food and hydration. These are not keeping her alive but keeping her from discomfort while she is alive. There is a big difference between machines keeping you alive and simply feeding you. I also requested a DNR. If my heart stops then I want it to remain that way, no reason to drag it on and on.

I most definitely would keep her hydrated. I have read and been told, by medical people that being dehydrated is a painful thing. I always believe God has the final say, when someone goes.

When my Grandmother was in her 10th year of Alzheimer's she was laying in bed all the time and did not talk. She did not "respond" to food when offered. That is what the physicians looked at to see if food should be discontinued. If she had opened her mouth or used a hand gesture to get the food. Then food would still be offered.
It is always difficult to stop life sustaining offerings. But if she doesn't show any response to the food or drink, caregivers may not push it.

If your mum’s living will states is specific in that she does not want nutrition and hydration to artificially extend her life, then that is what you must respect and do accordingly. My father has vascular dementia and my mum has Alzheimer’s. They too have been in a nursing home since it became too much at home. You have my sympathy. My father has had the conversation with me in the past that he would not want to be lying in a bed for years, with no quality of life, being fed and watered but not being able to communicate or be independent. I have passed this information on to staff. My mum on the other hand always refused to discuss things of that nature, so in her case I feel that she would have to be given food and water, even though to me, it seems like that would just be to continue the suffering. I hope that helps you come to a decision. It is good that you are at peace with their passing and that you have such a strong faith.

It is my understanding (and experience) that hospice care withholds meds (except morphine), food and water (aside from swabbing tongue and inside of cheeks with water swabs) to allow a patient to die peacefully in a matter of days, usually.
My wife experienced 25 or so urinary tract infections over two years time, and was unresponsive to the antibiotics on the final attack and we decided to have her go to hospice.   She entered hospice on a Thursday afternoon and died peacefully just 30 hours later.  The family all gathered at her bedside all day on her last day on earth and had a wonderful time singing hymns, recalling old times and loving on her and one another.  So my opinion is that it is ethical to allow the patient to die peacefully when he/she is no longer capable of recovering, per physician opinion.
Grace + Peace,  Bob

My heart goes out to you having to make this decision. My husband passed away on June 29, 2018 after only two and a half years into vascular Alzheimer's, a few months of being diagnosed with Parkinson's Disease and cancer for the fourth time after 8 yrs. of being in remission. He was also a type 2 diabetic on insulin. I was his only caretaker until the last two weeks of his life when I finally had to put him in a NH with hospice care. Only 13 days later, he was found unresponsive early on the morning of June 27th and was rushed to the ER and admitted. When his doctors told me that the prognosis wasn't good at all, I had no choice but to honor my husband's living will wishes. I told his doctors to please remove his IV fluids but leave the morphine IV and keep him on oxygen with the moisture added. I then kept putting moisture drops into his partially opened eyes and vaseline on his drying lips. They also would give him meds into his IV when he acted agitated. I sat by his bedside and sang his favorite hymns to him and bathed his face with a cool, wet washcloth. I also from time to time spoke softly close to his ear, telling him that if Jesus was calling him to come home, then it was alright with our kids and me. That we would miss him terribly, but could rest assured that he would have no more pains or illnesses and we would one day join him. Was that decision easy to make? You bet it was, but much easier that watching him slowly declining in health and miserable in the NH even though he was getting good care and attention and I visited every day. He had also lost the ability to swallow about four or five days prior to his death. His IV fluids were removed on the morning of the 29th, when the doctors knew he wasn't going to make it and I watched as he slowly slipped away from me. Jesus called him home at 9:45PM that night. I am a born again Christian and so was he. So if your Mom mentioned in a living will that she does not want to be kept alive as she is being now. You need to honor her wishes. Prayers going up for you to know this is what she wanted.

Your Mom sighed on to this "Living Will" a long time ago, which you Now have. This is what she has always wanted so she doesn't have to suffer and have you "Suffer" a long with her.
My own sister made the decision December 14th of last Year, dear, to "Pull the plug " on ou5r dying Mother. It is something she has to live with but with God's Guidance each day, it is the kindest most humane thing anyone can do, especially when it is at their Request.
My blessings go out to you.

Since you have in possession her wishes, therein lies the answer to your question.

End stages of life for a loved one is difficult on all fronts. It seems that your mom wanted to maintain a quality to her life. Being non verbal and unresponsive certainly is not what she invisioned. Since you are at peace with her passing I think the time has come to release her from this world so she may begin her final journey. A difficult decision but one made from love and compassion.