Continuous Care for unMANAGED symptoms?

Specialties Hospice

Published

Does anyone work at a hospice that supports the use of continuous care for a family who is in denial, or having ineffective coping that's preventing them from being able to manage symptoms properly? If so, where (& what state)- I want to come work there! LOL.... (or, maybe cry out loud)... OK, seriously, what approaches have you found that WORK? for cracking through denial, because the voice of one nurse, even with daily visits, isn't going to do it... the repetitive education crap doesn't cut it. Does anyone else agree that continuous care might be the most compassionate choice in that situation- you know, hang around long enough for the family to get on board with the idea of what it is they need to be doing?

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Specializes in Hospice.

i would do CC for education. Have SW or SCC been brought into the equation to assist the family? Also, you might talk with the HHA and see what insight they have into the family dynamics. Often their perspective is extremely valuable, and they often have the inside track... Good luck!

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In this scenario, SC won't step in because family says "no". SW is off doing one informational after another; SW has seen family once and "didn't notice any problems" so, it must be my problem...Home health aide, is as concerned as I am (even more so, suffering stress ulcers)... medical director says we don't have the staff for continuous care, and to quit asking... Anyone else been there? Argghhh...

Seriously, you have & are able to get continuous care initiated for education? This would be so healing!!

Our agency always scores low on "family evaluation" question asking if family felt secure during the end. I am wondering if agencies that have a dedicated staff for continuous care, score higher on this question. (I think, you can't expect fried casemanagers to "volunteer" for continuous care).

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You definitely need a dedicated staff for continuous care if you are going to offer it. I can readily see how case managers would not be able to add that to their list of duties.

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I'm sorry I sound so bitter... the SW I worked with was always accusing that I didn't have the compassion to persevere with the repetitive education approach, despite "umpteen" attempts (and I've been a nurse for 26 years- I don't think I would have lasted this long, if I didn't have compassion) instead of him getting in there and helping me. My nurse manager thought it was an amusing situation (she would chuckle) that he & I had conflicts between us, vs acknowledging the need for team efforts in dealing with denial- there was never a collaborative effort. It was very rough & I felt abused. I never figured out how to have victory in this... I got eliminated for "workforce restructuring". Thank You, Jesus, I guess.

Has any ever identified that a lot of family caregivers seem to dissociate under stress... like they might have PTSD that gets triggered as their loved one declines? Nothing you say or write out gets retained. To me, it's this caregiver that I think would have VICTORY, if Continuous Care was readily available.

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Specializes in LTC, Psych, Hospice.

We've never done CC for educational purposes. If a family appears to be having difficulty, we'll make daily visits until the problem is solved. We'll bring lots of educational materials w/ us and give it to the family a little at a time, unless the pt was admitted and they are actively transitioning. Then you really have to jump into overdrive and teach, teach, teach. Sometimes the first couple of visits are 2 to 3 hours long. We are blessed to have a wonderful SW and chaplain who make frequent visits, if needed.

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Specializes in Hospice.

Using CC for anything other than "brief periods of crisis as described in Sec. 418.204(a)" is MEDICARE FRAUD. Definitely not to be used for 'education'. We have used continuous care twice in 3 years. Both were for infants with status epilepticus requiring constant nursing care.

By the way, I feel your pain about people in denial. I have a middle-aged man whose father thinks his cancer has been cured and it is just 'inflammation' causing all of his problems. If we would just increase his steroids he would be fine... I feel like I am banging my head on the wall at every visit. So frustrating, and so sad for this man who will forever think his son could have been cured.

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Specializes in Med Surg, Hospice, Home Health.

There are none so blind as those who will not see. I have encountered situations where families are not accepting of hospice, even when the pt was on board. In the situation , once the pt could not speak for himself, family called 911, pt went to er; I stayed w 1 fam member until a brother arrived, they revoked- it was counted as a "service failure" on my part bc I didn't "educate" family..... Pt had been on service 8 days but even w a dnr, fam can do what they want.....outcome was pt died at hospital-

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Specializes in Urgent Care, Pediatrics, Hospice.

I am a CC nurse (staff, not agency) and the only time I have ever been sent to a case for teaching is when it's a transfer from hospital to home or from a facility to home. The teaching I do is in regards to symptom management and comfort measures but if I see that the family is having difficulty accepting what is happening to their loved one, I will listen and offer whatever information and comfort that I can. But I don't think CC should be used to take over care of a patient simply because the family is in denial. I am thankful that we have an excellent interdisciplinary team and our social workers are all over those kind of issues. If there are crazy family dynamics, I can call a SW or HC and have them there within the hour to handle any of those kinds of issues while I take care of managing sx. Also, in our company we all get daily reports from all the HHA's and the SW's and HC's and CM's so all parts of the team have a general idea of what's going on with every patient. The lines of communication are wide open between disciplines and I think that makes a tremendous difference for us as well as the families when cases start to get complicated.

The main issues I have run across as a CC nurse where CC is used inappropriately for unmanaged symptoms have had to do with my pt's in LTC's where facility staff does not understand hospice meds and refuses to medicate appropriately. The LOL with agitation who needs ABH routinely for agitation isn't getting it because the DON doesn't like hospice and tells her staff all the orders for that med have been d/c'd, and surprise surprise! She's practicing her kung fu moves on everyone who darkens the door of her room. They want CC under the guise of sx management, but in reality, we are just there to be bouncers and babysitters and make sure she doesn't hurt any of their other staff or residents, our safety be damned.

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