Aspiration risk, Hospice and SNR

[hospicernsrgr8t]

So, I need to hear opinions on this. I went to the SNF where I have just started to serve 3 new hospice patients, leadership wants a case manager to "develop relationships" with the staff, so that we may have better referrals and relationship with them.

One of these pt's is in her 50's with the sad diagnosis of Huntington's, which has progressed to the point that she is a severe aspiration risk, ataxia and difficulty with comminication. Hospice was referred secondary to her refusal of a PEG tube (which she was able to make known on her own at the hospital), and high risk of aspiration. The facility has documentation that the pt becomes disruptive in the dining room, and now they feed her in her room only....oh and new orders for risperdal 0.5mg po tid at meal times as recommended by psych.

So, I have visited with her twice during meal times. On both occasions, a pureed diet with honey thicks. She has jerky tounge movements, but coughed only briefly X 2 during both feedings and opened her mouth for the next bits. No s/s of aspiration there for me, lungs have been clear with each assessment and afebrile. :) She often repeats..."thank you's"

Today, I go to feed her and despited her difficulty with communication, she is saying "Hungry, Hungry!!" as I was preparing her tray. Then I begin to feed her and she starts to say "Breakfast, they took it". I clarified...."didn't you get breakfast?" She repeats, "they took it!" She loves coffee, even honey thick. "did you get coffee?" She says it again "they took it!"

So, I know I need to tread lightly and approach the DON....and tell her what my pt had said. In a matter of fact manner she states "Yes, if she shows s/s of aspiration, we are to remove the tray and try again later" and walks away. And then I clarify with the RN supervisor, she says that the company says that they need to take the tray if she is aspirating, and she "sounded really wet this morning, so we had to stop and I took her a nutritional snack later and she ate all of that". I asked if there was some kind of release that the pt and family could sign, stating they are aware of the risk, but would like food for comfort reasons....she tells me "no, there was a big meeting with the pt, daughter and Dr. re: their policy".

I am pretty sure my pt was telling me that she didn't get ANYTHING this morning. She was pretty adamant, and VERY hungry. I collaborated with LPN's on my team who provide feeding at other times during the week, they say they have never felt that she truly has aspirated during their feedings, either. Just a few light coughs, with her hand raised to cover her mouth. No red faced, extensive coughing episodes.

I talked with the team leader re: my concerns....who reinforced that we need to develop a relationship at this facility. I understand this, but not at the expense of the pt not getting fed. I truly feel it is an inconvience to feed her and it probably requires a licensed staff since she is an apiration risk. I need advice.

[leslie :-D]

well, it's true that most people are junky/wet in the morning, after laying supine all noc.

i also suspect that an inservice is needed, since many nurses equate hospice/comfort measures with "dying", therefore, not needing to eat/be fed.

add to the burden of only licensed personnel being the only qualified feeders, i'm thinking this pt's hunger/needs, have been deemed as low priority.

short of providing the aformentioned inservices, maybe you might know of some hospice volunteers who'd be able to do this task.

otherwise, i fear, your concerns will fall on deaf ears.

it's frustrating to deal with such fear and ignorance.

i hope this works out for her.

leslie

[tewdles, RN]

In my neck of the woods hospice volunteers are not allowed to feed patients.

When is the next care conference for this woman? Can you invite the facility staff to your next IDT meeting where the hospice POC can be discussed? Given that the family is in agreement with the plan to feed the patient inspite of the aspiration risk it would seem that the medical plan in the facility could reflect this with appropriate physician orders. If the facility cannot accomdate the reasonable expectations of the patient and her family they could consider moving to a more responsive and supportive facility. The MSW should be engaged in determining what the goals and priorities are relative to environment of choice for care delivery and death...they can then look at what choices and options are available to this unfortunate woman.

Certainly the facility in question is concerned about their liability, and so part of your job as the case manager/marketer is to answer their concerns about this perceived liability. Your agency should have resources to assist you in this. What is very important is that you apparently remain committed to the comfort and quality of life goals that your patient has communicated to you...good job and good luck.

[nhelkhound]

Challenging. First is the unique needs of a Huntington's patient. My very dear friend (like a sister) had early onset Huntington's. This is quite rare and most med/nursing professionals have never seen a case firsthand. Difficult to even find a neurologist with experience. IMO, antipsychotics, like Risperdal, are useless. Ativan TID 1hr prior to each meal may be of help. As to the aspiration risk..if she isn't presenting with S/S of aspiration now, she will in the future. This is part of the pathophysiology of the disease. A feeding tube would only minimally decrease this risk, but since this patient is verbalizing hunger, a PEG may help to alleviate some of the distress of hunger (I know she has refused but it may need to addressed again in light of her hunger). Huntington's burns TONS of calories, thus the caloric intake needs are extremely high. Is she losing weight? As to the DON and unit manager stating that they are to remove her tray is\f the patient exhibits any S/S of aspiration, this is paramount to starving the poor woman...she will continue to "cough" d/t the swallow dysfunction r/t Huntington's. Is the facility more comfortable with negating her aspiration risk or allowing her to starve to death? I would inform the DON that the best course in the interest of the Patient is to seek a Dr. order to offer/feed for comfort and that aspiration risk is acknowledged and acceptable to Patient and family. Please continue to advocate for the Patient; Huntington's is particularly challenging and she needs all the support you can give.

[leslie :-D]

all that said, keep in mind that aspiration is a nasty way to die.

i've had sev'l dr's write orders to provide food for comfort.

ea and every pt ended up aspirating and having an unpleasant death.

tewdles, our volunteers are allowed (and even encouraged) to be the feeders for many of our pts.

leslie

[Whispera, MSN, RN]

When I worked in Hospice, our volunteers were encouraged to feed patients if they were nurses or CNAs and many of them were.

[nhelkhound]

Let's keep in mind the goals and desires of the Patient, who is saying she's hungry and wants to eat. The aspiration risk should be explained to her and her family and they should be the ones to decide if the aspiration risk should or can be diminished and to what extent. Some risk has already been diminished by the consistency of her diet. Even if the Patient was willing to have a PEG, even that would not totally negate all aspiration risks, as eventually she will even aspirate her own oral secretions. Most victims of Huntington's die of pneumonia.

[hospicernsrgr8t]

Thanks everyone for your input, it has been helpful. I checked today at the IDT meeting if volunteers could feed her breakfast, sadly that is not an option for my organization. So, we will continue to collaborate with the family to feed the pt per their wishes for comfort/nutrition. The pt and daughter are well aware that aspiration is unavoidable at any time. I think some higher ups will be looking into the facility and their policy, as their sister home does have waivers that are signed if people refuse a diet that is recommended by speech therapy. This lady is so sweet, and the disease is so sad. I am committed to helping her be comfortable and happy, as that is what Hospice is all about.