Hospice patient is requesting food, but the family denies her

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I work in home health care as a CNA (I am a new grad RN though, still looking for a job) and I have a new client who is now on hospice. Her condition rapidly declined after she broke her hip and had surgery. She has severe dementia, is incontinent, and is very weak and bed-bound at this point. Here's where I have a problem though. Today she was asking to get out of bed, to eat something, and for a drink of water. She was denied all these things by the family's wishes since her daughter is her POA. She failed speech eval for swallowing, so she is NPO. Something just seems wrong to me about denying someone food and water when they are asking for it. It seem a little inhumane to me. She hasn't eaten in over two weeks and I can actually sit next to her and hear her stomach growling, while she keeps asking me for something to eat. I brought this up with her daughter, but her daughter is adamant about keeping her NPO so she won't aspirate. But why not respect her wishes and give her something to eat if she's going to die soon? If she aspirates, what's the big deal? She is already in declining condition. If anyone has some insight or life experience on this one I would really appreciate it. This has been bothering me for a few days now :(

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Was her swallowing bad enough that she couldn't be on a high level dysphasia diet? Because if her swallowing was really *that* bad to the point that she needed to be completely NPO for two weeks how is she not aspirating on her own saliva? Did SLP suggest NPO or is this purely POA's wish?

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Specializes in Critical Care.

There should be some sort of process for resolving these issues at your workplace, but there's no facility I've worked at where we would honor the family members request, despite being the POA. Family members generally are not allowed to deny comfort measures to a patient, and eating is a comfort measure. It doesn't really matter that she may very well aspirate, since that is a symptom of her dementia and other underlying symptoms, and if the overall plan is not to allow the underlying conditions to run their course then aspiration would be part of that. I have seen this sort of thing get referred to an ethics committee, but in the instances I've seen they immediately respond and don't even feel the need to discuss it.

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I wasn't there during the speech evaluation, but from what I've seen she does still have the ability to swallow. We have been using a tootette to moisten her mouth and she swallows when I do that. She does have the occasional cough with it thought. The NPO status was recommended by the speech therapist and it was written as an order in the hospital before today. it's just hard to see her constantly ask for a drink and something to eat.

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Specializes in PCCN.

such a shame. we had a guy that failed everything- even honey thick/pureed. but he was alert and oriented , and went to hospice with the knowledge that drinking would cause him respiratory distress.

I've always wondered about those who are so dysphagic that they don't aspirate their saliva ?

Poor lady, maybe they should giver her some morphine or ativan so she is calm and comfortable and not distressed. I really hate these cases :(

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Specializes in Utilization Management.
I work in home health care as a CNA (I am a new grad RN though, still looking for a job) and I have a new client who is now on hospice. Her condition rapidly declined after she broke her hip and had surgery. She has severe dementia, is incontinent, and is very weak and bed-bound at this point. Here's where I have a problem though. Today she was asking to get out of bed, to eat something, and for a drink of water. She was denied all these things by the family's wishes since her daughter is her POA. She failed speech eval for swallowing, so she is NPO. Something just seems wrong to me about denying someone food and water when they are asking for it. It seem a little inhumane to me. She hasn't eaten in over two weeks and I can actually sit next to her and hear her stomach growling, while she keeps asking me for something to eat. I brought this up with her daughter, but her daughter is adamant about keeping her NPO so she won't aspirate. But why not respect her wishes and give her something to eat if she's going to die soon? If she aspirates, what's the big deal? She is already in declining condition. If anyone has some insight or life experience on this one I would really appreciate it. This has been bothering me for a few days now :(

Is she really concerned about her aspirating, or is she trying to hasten death? Sorry for my crudeness, but this daughter has to be aware that keeping her mom NPO without an alternative route for nutrition will result in death. In my experience, when a patient fails a SLP bedside swallow eval, an MBS is recommended. If they fail that, PEG tube placement is recommended. Failing a swallow eval is common in stroke patients, which is the patient population I worked with, and sometimes after PEG tube placement, their ability to swallow returns after working with Speech to strengthen their muscles. Is any of that going on, or is this daughter legit just withholding nutrition?

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I wasn't there during the speech evaluation, but from what I've seen she does still have the ability to swallow. We have been using a tootette to moisten her mouth and she swallows when I do that. She does have the occasional cough with it thought. The NPO status was recommended by the speech therapist and it was written as an order in the hospital before today. it's just hard to see her constantly ask for a drink and something to eat.

I've been in a similar situation as a CNA before (family denying comfort measures). I spoke with one of the hospice RN's about my concerns, and they were able to talk with the relative, and we eventually got those comfort measures in place. Death is something that most people aren't prepared for, and hospice sometimes has to do some educating so that loved ones know what to expect and know the value of comfort over health at that stage. I know that this can be a very upsetting situation for you to be in. Use your resources.

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Is she really concerned about her aspirating or is she trying to hasten death? Sorry for my crudeness, but this daughter has to be aware that keeping her mom NPO without an alternative route for nutrition will result in death. In my experience, when a patient fails a SLP bedside swallow eval, an MBS is recommended. If they fail that, PEG tube placement is recommended. Failing a swallow eval is common in stroke patients, which is the patient population I worked with, and sometimes after PEG tube placement, their ability to swallow returns after working with Speech to strengthen their muscles. Is any of that going on, or is this daughter legit just withholding nutrition?[/quote']

I wouldn't be surprised if the patient's advanced directives state that she doesn't want a PEG. Lots of people (that I've talked to) don't want to be kept alive with such a low quality of life due to dementia.

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It depends on what her living will states. Some are very specific about feeding. None of us know what all the accompanying orders are for this patient, how close to death she is, nothing.

I see patients fail swallow studies all the time and are kept NPO. And unless she is ready to go soon, they don't want her aspirating. I truly feel for her, but without knowing every detail of her care, I wouldn't even know how to begin to advocate for the patient.

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Specializes in Utilization Management.
I wouldn't be surprised if the patient's advanced directives state that she doesn't want a PEG. Lots of people (that I've talked to) don't want to be kept alive with such a low quality of life due to dementia.

I thought of that after I posted :facepalm:

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Have you talked to her RN case manager about your concerns? I think that's where I would start in your position - your line of thinking is correct in my opinion.

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Specializes in Hospice.

I am an on-call hospice nurse and you should definitely alert the case manager. The POA needs some education that the CM can provide. Usually it is the other way around, the caregiver wants their loved one to eat more, but the patient has no desire to eat.

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