Question about nutrition at the end

It's been 8 days since my father has had any nutrition. After eating well for several days last week, he started not wanting anything including Ensure. He has a PEG tube but was always able to eat by mouth.

We are currently putting small amounts of water with meds through the tube but the Hospice doctor has advised that if we were to put any Ensure in there now, his diaphragm is pushing hard against his stomach and could cause the liquid to come up and basically cause him to drown.

I guess my question is 1) has anyone encountered someone who hasn't eaten in a week suddenly start asking for food and 2) is it normal to cut off nutrition at this point the way it was done.

My dad just wrote a note asking "when do we eat?" which about killed me.

I can only tell you my experience- don't know if it's typical. When my husband aspirated on a pill, he couldn't clear his throat so basically had a few sips of boost ( same as ensure) and that was all the week he died. He tried to eat but couldn't get it down. How is his weight? Mine was down to 118 pounds, so basically was totally undernourished before he stopped eating. Star, you are in my thoughts daily. Glad you decided to stay on. How's your mom today?

Thankfully his weight stayed steady at 180 this past year as he was able to eat. I can tell he's lost a few pounds but still has reserve. I know the water we are putting in can keep him going and he doesn't appear dehydrated. My mother is a mess. Nothing she says or does makes sense any more. We have an appointment with the funeral home today which should put everyone over the edge.

Hi Star

Lots of things make this complicated.

The will to live has a lot to do with how long a person may go through the end stage. You have talked about your father being very concerned for your mum being left alone.

If he kept his weight up then as you noted he has lots of reserves to draw on now, which is vastly different for example to my Chris who was barely over 100 lbs

It is common to cease nutrition in a palliative setting, and it started by him not wanting food of course. I would think that his asking about eating now is not what it seems.

I totally agree with the nurses however that after this long without nutrition, taking in anything by mouth would very likely cause him to vomit and would be very unwise.

How much water are they giving him and how often?

I'm sure each day is harder on your mum now (and of course on you and your dad).
I have never been able to understand wanting to hold on to life, for oneself or another, no matter what. Holding your hand still xxx

His last big meal was a little over a week ago and the nurses said sometimes people try to "stock up". He gets maybe 1-1 1/2 cups of water a day from the sips he takes and the medication going through the tube. He expressed again last night that mornings and nights are rough. I can't imagine struggling through this the way he has.

I can't imagine it either Star.

But you are making sure his wishes are met as best you can, you are there with him every hard step of the way. I truly hope you will draw a lot of comfort from that.

We can't make people's choices for them, but we can stand by them and at the end of the day, that is a harder thing to do, but is worth everything.

Star, before your dad stopped eatinga week ago, did he have trouble keeping the food down? Do you think the diaphragm weekness happened rather suddenly? May be he lost his appetite for a few days, and has got it back now. I am not saying that you can go against the medical team's advice, but if your dad wants to eat, why not give him a little bit of food?

Hi Rose
He has bulbar onset and his respiratory system has been affected since last October when he was diagnosed. It's progressed rapidly in the past 2 months. At this point we're afraid of aspiration and ironically, he just choked while sipping on water. I'm not sure how well he can swallow at this point because last week he said his tongue and face were getting stiff. Right now I have him sucking on a foam stick dipped in orange juice so at least he can taste something.

It's important to keep the mouth and lips moist, if only with a swab.

Star,
I don't understand why your dad, who sounds rational, isn't being asked these questions about his preferences. IMHO no one else's preferences matter as much right now.

The notion of withholding food from him so he won't choke is bizarre to me, if he _wants_ food. It is for him to choose the manner of dying. He has a PEG that accepts formula, and it's his PEG.

If he wants food (formula or to taste a last bite of cheeseburger or whatever), I'd give it to him, just with the one-time brief advisory that it might shorten his life (a fact I daresay he's aware of) and ask him to nod or blink that he understands.

Larry ate what little he felt like a few hours before he died. I wouldn't have dreamed of saying no, and it's not why he died anyway. But even if it was, I'd have no regrets. I may be missing something here, but if I'm not, feed the man with his informed consent.

Laurie if you start again at the beginning of this thread, Star says he chose to stop eating a week ago.

Having bulbar issues, he isn't really eating anything like a cheeseburger and is choking on sips of water.

Star you are still doing an amazing job as you constantly ask him what he wants, obtain advice from the nurses looking after him, and then try to navigate the differences in how your mum wants everything to work out.

Thanks again everyone. I spoke to the nurse again today and she said the risk of aspiration is high if there is more than an ounce or two in his stomach because his diaphragm is pushing hard against it to breathe. She could detect different sounds the other day that indicate other muscles are being used He's on the trilogy almost 100% of the time now and if he were to vomit it would be into his mask and he would basically drown. It's like we have two nightmare situations and neither one ends good.

I talked to my mother today and told her he's holding on for her. She needs to sit with him and tell him she will be ok even though she hates to see him go. The nurse has told us that most people at this stage aren't as alert as he his. He's constantly thinking about what people need to know and worrying about how things will get done.

starente15 said:

I spoke to the nurse again today and she said the risk of aspiration is high if there is more than an ounce or two in his stomach because his diaphragm is pushing hard against it to breathe. She could detect different sounds the other day that indicate other muscles are being used He's on the trilogy almost 100% of the time now and if he were to vomit it would be into his mask and he would basically drown. It's like we have two nightmare situations and neither one ends good.

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My father had stomach cancer and lived for 5 years on frequent 2 ounce feedings after his stomach was removed. Obviously that is a different situation but it does show that your father can be fed adequately even if the volume "has" to be limited -- and I must question that advice. I have never heard that the stomach presses so hard against the diaphragm as to cause vomiting. I think your nurse is misunderstanding the situation.The diaphragm moves upward as it weakens and as lung volumes decrease. The stomach does shift upward into the space left by the receding diaphragm, but the stomach doesn't push hard on the diaphragm. It actually has more space than ever in the abdomen and won't crowd a struggling diaphragm. It can hold food without a problem. If your nurse has had other patients who vomited after eating, there are other likely causes. The major one that comes to mind is that a week of not eating and especially the very low amount of water he is being given has caused severe constipation. That will cause vomiting. So will attempting large feedings on someone who has refused any feeding for a week.

I know you are stressed to the max and you are doing everything you can for your father's comfort. (I love the orange juice on a sponge idea!) I hate to complicate things even more, but I suggest that his bowel movements over the last week be questioned and if necessary laxatives or enemas be given to get any blockage out. Increase his water intake by tube (water is actually the hardest thing to swallow without choking!) to at least 3 cups a day minimum. Include the water used to flush his tube as part of those 3 cups. And feed him. If he vomits it is not because his stomach is compressed because it isn't. Reduce his feedings to a couple of ounces every couple of hours. If he wants bites of food let him have them in addition to his tube feedings. If he aspirates and does develop pneumonia, well, they call pneumonia the "old man's friend" because it is often the way out of the miseries of disease and old age. Using the Trilogy all time is not at all unusual at this point. If he is going to vomit it will be after a feeding so that is the time he should be watched until he has shown that the small feedings don't cause him to vomit.

Again, I don't want to add stress to your situation. You are asking questions here and I hope my answers are useful in making your father and you more comfortable.

I would suggest continuing palliative measures rather than increasing any life supporting measures. Remember this is end of life stuff, palliative care rather than long term supportive care so a very different situation. Increasing fluids may simply prolong him for a few more days of this awful hanging on ordeal.

Star how did your mum go handling what you said to her? What a tough conversation to have.

hugs

I don't believe that 1 1/2 cups of water is good palliative care. It is too much to let him die quickly and not enough to keep him comfortable. At anything less than about 3 cups a day his mouth and tongue are very likely miserably dry and uncomfortable even if he has saliva problems. The situation is awful, the stuff of all our nightmares. Not knowing his pain level, whether the Trilogy is able to keep him comfortable as far as breathing is concerned, his ability to communicate, whether his palliative care is still addressing his bowel needs, make it hard for us to know how close to death he actually is, and what we would do at this point, much less what he wants. I apologise to Starente if my input is making her feel worse about the situation. I am horrible at giving emotional support, and much more inclined to butt in on physical issues. That may well not needed or helpful if her father is no longer just deteriorating but is actively dying.