end of life directive vs. care

GSS

During end of life stage dementia in care facility, when patient doesn't eat much and needs help drinking fluid, not enough fluid intake is presumed to have caused kidney stone(s) which are painful to pass, blood in urine, and UTI.  End of Life directive wants no measures taken to extend his life.  Courses of antibiotics have been given for UTIs and morphine prescribed for pain, but who is present to note any bouts of pain?  There had been grimacing and tenderness noted by doctor, but now grabbing tightly to sheets, peoples' arms, etc. has been seen as a natural reflex of those with dementia, not necessarily pain, the same with body shaking that's so strong that the bed movement can be heard in the hall.  Care/operation for any stones would have to be done via transport to hospital hundreds of miles away (remote situation) and can't be done in his condition.  IVs for fluid considered extending life.  The doctor recommends keeping patient dosed with morphine for any pain which precludes pretty much any further eating and drinking, the sensations for such are probably no longer present anyway spouse is told.  So, I'm presuming death is very close if no nutrition given in any way.  Does all this sound acceptable/expected/normal under the circumstances?  Need to know if anything has been overlooked and if care is correct or if spouse should know anything else.

Cynbar

Yes, this sounds acceptable and normal under the circumstances. I'm assuming he is on hospice, they should be able to keep him comfortable by adjusting the pain medications. The spouse (if she is the health care proxy/medical power of attorney) does have the legal right to revoke hospice and send him to the hospital, but that wouldn't make much sense in his current condition, would likely extend his suffering. The facility staff and hospice staff are the ones who are monitoring his pain, communicating with the doctor and coordinating the medications. I would make sure they are aware of the symptoms you describe, agitation is related to pain and can also be controlled. And yes, end of life should be soon. This is regular hospice protocol, but the spouse is part of the team and should be in close contact with his hospice RN case manager who should be thoroughly explaining everything.

GSS

Thank you.  I am the spouse and I had forgotten about hospice.  Neither the care facility nor the ombudsman had mentioned them.  I will contact and make sure they are allowed into the facility and are fully aware of situation.  Feeling totally overwhelmed at this point, so such reminders and information are incredibly helpful and appreciated.

Cynbar

GSS, if your DH isn't on hospice, ask for a referral right away. The facility will usually have a hospice they prefer to work with, that is a great start. Call the facility and talk to the head nurse on his unit, or the supervisor if necessary. You don't have to wait until Monday, hospices admit patients anytime. Valuable time is being lost that could be spent monitoring his care and keeping him comfortable. If he is in fact already on hospice, get contact info from the facility nurse and call them. They are the ones who should be helping you through this.