As mentioned, we moved my dad from a MC to a SNF. I think this SNF is much much better and should have put him in in the first place. But even they get some things wrong. The first couple days they were giving him honey thick liquids, which he spit out, versus the nectar thick. The dietician claimed the orders said honey thick, but after talking to hospice, we confirmed it was nectar thick. Based on the advice of the hospice nurse, we have told the SNF we want my dad waken for meals. We do not want him to sleep through. Yet my brother was there earlier and once again they said if he is sleeping they let him sleep. Maybe there are good points for that. But there are two issues here. 1. What is better? I would think patients need to eat at times, and the hospice nurse said that. She said have him waken, then if he doesn't eat, don't force him but at least wake him up. I suppose the opposing view is if they are sleeping they are sort of at peace, and why wake him up and agitate him. They say if he is hungry he will wake up. 2. The other issue more basic. Despite what may or may not be better, I would assume it is ultimately up to the family. I have instructed this to them a couple times yet the word does not get through to all shifts. I know that has its limits. Like if we say we want him to drink coca cola, they can't do that. But the way I understood it from hospice was it's up to us. And the hospice nurse, who we have come to trust more than anyone, has recommended waking up for meals. Not forcing food down, but at least wake them up. My dad is somewhere in stage 7. I am assuming and therefore has limited life ahead of him in any event. But I would like him to eat to keep strength up as long as possible. Also, just feel these care facilities don't get their communications out like they should. Its like we have to train each new shift as they come on as our instructions are not passed on to them.

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Karsten, no burden; ask all you want. I always feel privileged when I can share personal experience that might help someone else. I think the others here feel the same way.
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Karsten, I'm sure that his not eating wasn't the cause of his death but a symptom that he was transitioning, and the fact that he threw up just means that his body wasn't able to get any sustenance from food any more. They weren't holding him down and forcing him to eat, he opened his mouth and ate - he may even have derived some pleasure from his last meal. Stop beating yourself up over this.
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Karsten, my point is that you need to have a care meeting so that the orders in Dad's charts are changed. Talking to each shift results in THAT shift complying with what you want. It does NOT mean that it's changed going forward. For THAT to change, you need for the Doc, DON or someone in authority to change the orders in the chart. The day to day staff are not authorized to make those kind of changes.

THAT took us about 6 months to understand.

Since your dad is on Hospice, there are a lot of players, each with their own opinion. It is REALLY helpful to get them all in the same room, at least by phone and discuss issues like "do we wake him for meals" and "should he be put to bed in the afternoon for a nap".

The most satisfactory yet infuriating care meeting we had for mom was one in which we got everyone, including the potential hospice organization nurse in the same room and I mentioned that mom had a collapsed lung.

Everyone started and said "who told you THAT?" (Um, her nurse, on the phone, yesterday morning).

No, Mom did NOT have a collapsed lung. But if I hadn't gotten everyone together, we never would have known that.

Ask, nay DEMAND and care meeting this week. Make sure the NH doc has examined dad beforehand so there's not that excuse. Come out of this meeting with a coherent, unified plan for dad's care.

Next day, ask the nurse on each shift to tell you what the care notes say and make sure that they line up with what you all agreed to.
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Karsten, I'm going to take gentle issue with waking someone for meals, especially someone on hospice. We went through that with my father. Sometimes sleep becomes more elusive as it segues into sleeping much, much more. Being awaken to eat disrupts the sleep pattern.

We also were advised to let him sleep; if he awoke, then he could be fed. If not, there was the next meal. He was already seguing into sleeping more and eating less day by day.

What you can do is observe his sleep patterns to see if there's a schedule, and ask that his meals be brought at the average time he awakes.

Speaking from experience, this is much better for the patient than waking up someone who really needs his sleep. It shouldn't be that difficult to refrigerate his meals and reheat them to match his sleeping and wakening cycle.

It was also explained to me that eating can tire out someone on hospice, resulting in longer sleep times after eating. It's so easy for us that eating is nourishing, but after seeing my father struggle to eat, I realized how much effort he expended, and that contributed to his fatigue.

If you want your father to drink cola, and it hasn't been thickened, there are some different issues, although it may already have been factored in, depending on his DNR status. This is something we also went through.

If in a hospital a dysphagia patient drinks unthickened liquids, and is full code, the facility is obligated to resuscitate him if he codes. His eating would not be in compliance with hospital policies.

The last months of Dad's life were complicated, so I don't remember for sure if we discussed a no code status in conjunction with non compliance with a dysphagia diet, but it's possible that this could be the reason why they don't want him to drink something like coke, which really is an unhealthy drink for anyone anyway.

If he's not a full code, and wants to drink coke, typically the family must be made aware that he could choke, aspirate, and/or possibly develop aspiration pneumonia or have a severe reaction (cyanosis) from the choking.
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Karsten, my approach was to decide if I felt the advice to let my father sleep was realistic, and legitimate, then I agreed to let him sleep through meals. If I felt otherwise, I would have expressed that concern, and if necessary, gone to the unit nurse or DON to ensure that it happened.

I recall something else, then when he was first awakened to eat, he was so tired that he choked more easily and ate less, then often fell asleep while attempting to eat.
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Perhaps it is different where you are but I will tell you something I have observed in the year my mother has been in a nursing home - food is not available between meals and people who consistently don't eat do not live very long.
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cwillie. That is my concern. Though the did tell me that last night after my dad eventually did wake up they heated up my dads food and he ate pretty well. While they scheduled a care conference for a couple weeks out, tomorrow I will be demanding one right away. Overall, however, the current SNF is so good compared to where he was before. I worry my decision to have him at the MC before took time off him, not to mention the added trip stressed him out. Wish I would have had him at this SNF to begin with. But still. I have to keep my eye on them.
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Karsten, don't try and second guess yourself. Even though we hope we'll recognize the signs it doesn't always work that way. You had no way of knowing what would happen and I'm sure you didn't cause it. Sometimes they just fade away and sometimes it's quite sudden. My mom was a healthy eater up until 24 hours before she died. Up and walking around too. And then gone in what was likely just a few hours. I'm sorry for your loss, but please don't feel that your actions had anything to do with it. And certainly they were based on wanting the best for him.
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Karsten, may I offer hopefully consoling advice on the issue of eating? As my father declined, he too ate less and less, not because he didn't want to, or because the meals weren't served at the times he was awake, but because he didn't have the strength to eat and b/c he was seguing into the latter stages of end of life.

The nurses (whom I trusted and relied on very much), told me that as death draws closer, the vital organs shut down and focus on the essentials, similar to when someone is facing freezing temperatures, and the body needs to protect those organs it needs the most.

Dad's energy at that time was focused just on breathing, even with oxygen on. Anything else, including eating, and especially speaking, drew away from the basic breathing.

I sometimes think there's an analogy in a sinking ship, although that's not a particularly pleasant contemplation. Sometimes just to stay afloat long enough for a rescue, you have to scuttle what else is on board and lighten the load on the boat.

That's what happens when a person segues into the last stage of life.

There is nothing you could have done at that point. One meal wouldn't have made a difference, and as CWillie notes, he had reached the point of not being able to eat.

To have taken a position that encouraged him to eat would have been not only fruitless, but detrimental.

So, congratulate yourself on choosing the right path, at the right time.

And think rather as you've written elsewhere - he's out of discomfort, pain, anxiety, and is at peace.
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Condolences on your father's death.

You took the best care of him possible, right up to the end. I hope you feel proud of that.

Eating did not bring about his death. His reaction showed how close he was to death at that point.
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