Not normal. Try a different hospice agency.

I would check immediately with the supervising physician. My experience with hospice is longer term, and whether to eat or drink — or not — was completely up to the patient. If there’s some specific reason not to feed this particular patient, I would want to know exactly what it is — and how to handle the patient’s requests. (Is ice cream ok? Sorbet? Ice chips? Water on a sponge?)

My understanding in our situation was the patient would end up in more pain if they ate because they wouldn't be able to digest it.

Don't forget that the patient and their family are the ones who get to decide on the level of care, not the pedantic nurse who thinks that nobody in hospice is allowed to eat. That's ridiculous and you can push back in any way you'd like.

Anonymous wrote:If patient wants to eat, you might be the one who has to feed it. Plus, they might jack up so much pain meds they are too zonked out to eat. And no IV nutrition or water will be given I assume

“They” have no business “jacking up” pain medicine beyond that required to treat pain at any given moment. Pain management is an art and requires individualized planning and reassessment. People do not always have to be “snowed” to be comfortable. Some medical personnel are morphine happy with a one size fits all sledgehammer approach. Dying people deserve better.

It sounds like a miscommunication to me. She gave you instructions that don’t fit your loved one. It sounds like you communicated that those instructions don’t fit the situation, and she backed off.

You’re in a stressful, high emotion situation. Everything seems hard and wrong right now, probably.

Nothing that you’ve described sounds amiss, though.

Anonymous wrote:If patient wants to eat, you might be the one who has to feed it. Plus, they might jack up so much pain meds they are too zonked out to eat. And no IV nutrition or water will be given I assume

We just went thru this in October btw. Parent wanted to eat, transferred to hospice, we were told they'd be fed. . . But in reality, can't eat or drink passed out on pain meds 24/7. So basically didn't eat or drink for about 8 days and passed. The cancer was very very advanced though. I'm sorry you are going through this!

If she said it then she clearly doesn't understand true Hospice protocol. You don't starve patients who want to eat. If the patient is doing better than expected after being admitted, they will discharge the patient.

I understood completely what was said. We pushed back and she backed off. But it feels bizarre to give this instruction without setting eyes on the patient in the next room. Again, I’m for choice in death for terminal patients. The generic proclamation was jarring.

If patient wants to eat, you might be the one who has to feed it. Plus, they might jack up so much pain meds they are too zonked out to eat. And no IV nutrition or water will be given I assume

I wonder if you didn't understand completely. With Hospice for us, my dad was having trouble swallowing. They gave us thickeners for even water. They said don't make him eat if he doesn't want to eat, but if he wants to just be careful with what you give him. Lots of liquids (which were fine and didn't need the thickeners) and pudding kinds of food.

Bottom line, you do what your loved one asks. No, you should not force them to eat. But, if they ask for anything, just do what they want. That is the whole point of hospice.

If they have an appetite and want to eat, feed them. How is this a question? Hospice is for comfort and pain management, and feeding falls into that category. You can have a terminal illness, but still want nourishment if you're hungry. To not feed someone who wants food is cruel.

Anonymous wrote:On intake visit, hospice nurse instructed us to stop feeding the patient. Patient still wants to eat, is not aspirating or vomiting food though eating very slowly. Patient long declared no desire for extraordinary life saving measures with terminal cancer and extreme age. We sought hospice in part for guidance in medical comfort care and are anticipating inability to eat is close. We were not prepared to be told to stop feeding a patient who wants to eat and is still showing and extraordinary will to live.

Is this usual with hospice?


We are all basically right to die with dignity people, but not inclined to starve a body not quite ready to shut down. Should we back out of hospice?
Been there insights appreciated.

I am sure there will be those who claim to be experts and disagree with everything I say, but this is precisely the kind of demand that makes me think that at least some hospice providers have drifted away from death with dignity, keeping the patient first in mind, to an ethic that answers more to policies, procedures and payors. Your post, of course does not contain every possible detail that might underly the instructions you were given, and it doesn’t need to. You are your loved one’s caregiver and advocate. You should follow your conscience, not third party demands that have not been justified. Not wanting to be recusitated or artificially kept alive does not translate to a desire to be hurried along. If it was my person and they wanted to eat I’d feed them as long as they felt that way. Your person may not be ready for what hospice wants to give.

On intake visit, hospice nurse instructed us to stop feeding the patient. Patient still wants to eat, is not aspirating or vomiting food though eating very slowly. Patient long declared no desire for extraordinary life saving measures with terminal cancer and extreme age. We sought hospice in part for guidance in medical comfort care and are anticipating inability to eat is close. We were not prepared to be told to stop feeding a patient who wants to eat and is still showing and extraordinary will to live.

Is this usual with hospice?


We are all basically right to die with dignity people, but not inclined to starve a body not quite ready to shut down. Should we back out of hospice?
Been there insights appreciated.