Trying to explain hospice care to pt's and their families

[Wicked Wahine]

I often work with patients who are very ill and frequently have no hope of surviving or no hope of having any type of meaningful recovery. Our patients are often with us for a few months, so I usually get a good feel for the family dynamics and the reasons behind their decisions. Today, I had a private conversation with a pt's mother after I had informed her that the pt was not looking well and is having a few setbacks. Pt's mother asked me about hospice care and that it's something she's interested in looking into but the pt's husband is not because he feels that hospice care is the same as giving up on the patient. I explained to her that what hospice is really about is just shifting focus from curing to comfort. That she could still get treatment for all of the issues she has going on right now, but that the focus would shift where comfort would be the main goal instead of aggressively trying to fix all these issues. I also told her that nothing is absolute in hospice care, that if things change, a person can come out of hospice care, etc. We talked about how easy it is to get wrapped up in all of the "little" things, like treating her UTI, and getting her breathing on her own and so on but ultimately you have to take a step back and look at the big picture... the underlying disease process that is causing all of these problems and will end up killing her as there is no cure for it.

Anyways, I felt like I helped her come to terms a little more with the idea of hospice. She wants me to talk to the pt's husband too but at this point I think they need to talk amongst themselves and maybe just call a hospice rep to come for a consultation.

Anyways, in all that rambling, I was hoping I was explaining the idea of hospice well... about the shifting focus from care from a cure focus to a comfort focus. Is that an appropriate way of explaining it?

[tewdles, RN]

Sounds like you did a respectable job, considering that you are not a hospice nurse. You gave her sound information in a compassionate manner. I think you are right that it is appropriate to get a hospice rep involved with the next meeting.

Thank you for advocating for your patient and family!

[leslie :-D]

i usually tell folks that hospice is about a pt/family accepting the terminality of their disease, accepting the futility of aggressive treatments, with the goal of pt in living out the remainder of their life in comfort, dignity and peace.

it's always about quality vs quantity.

if i can get across that aggressive and futile treatment only serves to increase suffering while interfering w/precious time, then the rest of the journey is much easier.

the problems occur when ambivalence and desperation, compromise their comfort...

physically, emotionally and spiritually.

leslie