Aspiration drama!

[anashenwrath, ASN, RN]

Hello all!

I am dealing with some drama with a patient on hospice for end-stage Alzheimer's at an ALF (darn ALFs!) and was wondering if the community could give me some feedback.

Pt is total assist for all ADLs and has significant dysphagia, yet her husband comes in faithfully three times a day to feed her (and with that I'm sure a lot of you know exactly where this is going!) Diet is pureed.

Recently, pt has had incr coughing, gurgling while feeding. She pockets and takes minutes to swallow. Otherwise afebrile, lungs sounds clear. Facility can NOT thicken, but I ordered thick-it and did nectar-thick teaching with spouse. Unfortunately, while he always smiles and nods and gives me return demonstration, every time I come to the facility, the staff complain that he is not thickening enough, feeds her way too fast and will sit with her for over an hour trying to get her to eat. I sit with him, reinforce teaching, and the cycle begins again.

Earlier this week, pt began coughing and vomiting up liquid at breakfast. Facility freaked out and spouse became angry bcs they refused to feed patient until I assessed. I found her asymptomatic, but ordered a swallow eval to make everyone happy.

Swallow eval concluded what we all know. Patient is at significant risk for aspiration. They recommended pleasure feeding w precautions. Now the facility is basically asking me to police this spouse and are saying that if they see him attempting to feed her too fast or not thicken appropriately, they are going to call Elder Services.

It's important to note that ALFs in my state are SOCIAL MODEL, which means they are considered a "home" environment, NOT a medical environment.

I'm thinking of maybe writing up some sort of "aspiration contract" that the spouse could sign indicating that he understands the risks of aspiration should he continue to be noncompliant. Anyone ever done something like that? Samples?

But beyond that, I don't think there is much I can do... I don't feel comfortable "policing" this guy. If the facility wants to call ES or tell him he can't come in at meal times, I guess that is their prerogative. But I feel like the spouse has verbalized an understanding of the risks and there isn't a way to "force" him to comply, unless I recommend his wife be moved into a skilled setting (as she has no symptoms, it's not like I can GIP or inpatient her).

If this was a home patient, I think I would do my best with teaching and reinforcement, but at the end of the day, I would drive home and leave it to the powers that be. If it was in a SNF, the staff would be able to thicken food appropriately and follow through on interventions in a way the ALF can't. Is there anything I can/should be doing here that I'm not???

[heron, ASN, RN]

In my view, explaining very clearly in language the spouse understands what is going on when his wife starts coughing and choking is about the best you can do. Obsession with feeding is a very common family response in an end of life setting, especially when the disease process is drawn out as it is with dementia. I think it's a manifestation of denial and the only thing you can do is to gently continue to reinforce reality.

The real danger here, I think, is the potential for the alf staff to get sucked into an adversarial relationship with both the spouse and you. Some inservicing might be in order. Keep in mind that caregiving staff are going through a grieving process, too. Respect that.

[Katillac, RN]

There's a lot you can do here, mostly with supporting the staff around the informed decision of the resident's decision maker to engage in unsafe behavior with her. When I had a nearly identical case recently, my language went: "It can be very hard to watch our residents do things we think may be unsafe. But we know that once we educate them of the risks it's their right. We want the best for our residents and we get so accustomed to advocating for our them it's hard to let go when their people decide something different from what we think is best."

It may be helpful to remind people that 2/3 of end stage dementia patients die of pneumonia whether on tube feeds or hand fed. The neurological impairment that results in ESD patients not swallowing and eventually not even recognizing what food is continues to advance. It follows that the 2 to 4 pints of saliva a day produced daily would likely be aspirated as well. So whether he feeds or not, she is likely to aspirate. He's clearly indicated he's not willing to let go of trying to feed her, so it becomes our job to let go of needing him to stop.

To CYA, I'd document someone witnessing your education of the spouse. A contract doesn't provide any additional layer of liability protection for you or the ALF and could be rough on the spouse. As to the facility calling elder services, from my risk management work I'd say that's a HUGE can of worms they may not want to open. The recommendation is pleasure feed with precautions, do staff think ES is going to come in and monitor thickness? They aren't health care professionals and might view it as trying to limit the resident's intake or the spouse's access. They could even argue the ALF is suggesting she needs a higher level of care (SNF) but she's remaining at their facility. Not a good place for them to stand.

[anashenwrath, ASN, RN]

Great responses from you both. Thank you! I've incorporated this advice into my last few visits, and I think we'll get on the same page (hospice/patient, spouse, and facility). much love to my hospice homies!

[MunoRN, RN]

I'm not sure what there is to make him "comply" with. The whole idea behind pleasure feeding is that you're accepting the likelihood of aspiration, since aspiration as well as lack of eating are normal effects of late-stage Alzheimer's, and if the decision has been made to allow the normal disease process to occur then there's no reason to fight either one of these effects, and doing so could bring unnecessary misery to the patient.

If the patient is eating because they want to eat then there's nothing to address, if the spouse is pressuring the patient to eat more or faster than they want then some education is in order. It's not unusual for a patient's family to see a reduced appetite as something that needs to be fixed in order for the patient to be comfortable, even though a patient often stops eating to avoid the suffering that can come with eating. So I would find the common understanding with the spouse, which is (hopefully) that he doesn't want the patient to suffer, and remind him that reduced appetite is something the body often does to avoid suffering.