Hospice Patient’s Family Refusing Hospice Cares

[SilverBells]

For those of you who are familiar with working with hospice patients and their families, have any of you experienced difficulties or challenges with them accepting hospice cares?

There is one example that I can think of is a lady who has been a Hoyer lift for months and who has been unable to speak for awhile.  Daughter keeps requesting speech therapy to work with her mom to improve communication even though it has been explained multiple times her mom probably won't speak again.  The patient has a variety of pain medications available but the daughter refuses to allow staff to administer without contacting her first and sometimes she is not available when pain medication is needed. Daughter also insists that resident stay on Coumadin even though it is no longer medically necessary which means more INR checks for us and more finger pokes for the resident.  Most of the time, Coumadin is discontinued when someone enrolls on hospice,  but daughter won't listen to reason. 

To me, it seems like the daughter doesn't really understand what hospice care does and doesn't involve.  Any other similar experiences? Any tips to convince the daughter to let us treat pain, discontinue INR checks, etc?

[SmilingBluEyes]

1 hour ago, amoLucia said:

Bolding mine.

This reminded me of the situation a couple years age of that mother who refused to disconnect her legally brain-dead teen dtr who exp serious post-tonsillectomy care issues. Had her moved to NJ to continue 'corpse care'. There was the attempt to sue BIG but the Calif law didn't support her status. Remembering all the crazy news pix & stories. The kid was eventually 'let go' after quite a while, as I believe. 

Jahi McMath. That was really something else.

[SilverBells, BSN]

Update: Sadly, the patient ended up passing away before most of the hospice measures could be implemented.  Hopefully, she was at least comfortable 

[amoLucia]

SBE - TY. I was going crazy trying to recall the teen's name. I followed that story for a long time because it was here in NJ (I knew the hosp). Then she went to home care.

One of the saddest stories I ever heard. If there are those reading here who don't know about her, I suggest they followup her name, Jahi McMath. Eye-opener re crazy laws and crazier human behavior.

[JadedCPN, BSN, RN]

14 hours ago, amoLucia said:

SBE - TY. I was going crazy trying to recall the teen's name. I followed that story for a long time because it was here in NJ (I knew the hosp). Then she went to home care.

One of the saddest stories I ever heard. If there are those reading here who don't know about her, I suggest they followup her name, Jahi McMath. Eye-opener re crazy laws and crazier human behavior.

I remember this in great detail, I followed along for quite a while because I was morbidly fascinated by the whole scenario. So sad for that little girl. 

[Hannahbanana, BSN, MSN]

21 hours ago, SmilingBluEyes said:

22 hours ago, amoLucia said:

Bolding mine.

This reminded me of the situation a couple years age of that mother who refused to disconnect her legally brain-dead teen dtr who exp serious post-tonsillectomy care issues. Had her moved to NJ to continue 'corpse care'. There was the attempt to sue BIG but the Calif law didn't support her status. Remembering all the crazy news pix & stories. The kid was eventually 'let go' after quite a while, as I believe. 

Jahi McMath. That was really something else.

OMG, I remember that whole thing. Awful stuff. I actually ended up sending a card to the nurse manager of that unit thanking her and her nurses for dealing c all that. She was touched. I believe the address was posted here and she got more.

[amoLucia]

There's actually a Wikipedia entry for 'Jahi McMath Case'. And lots of other info. She died June 2018. Did some reading up on the case. Very bizarre story. And sad for Jahi. Learned some details that I hadn't known about.

I remember reading that the staff of that Calif hosp were prohibited from discussing the case with anyone, most esp the press/'net.  I remember thinking they would have been the best source for true reporting details that were trickling thru the media.

[TriciaJ, RN]

@SilverBells I'm glad the situation is resolved, such as it was.  Was there ever a care conference when someone could ask the daughter what was her understanding of patient's condition, what were her expectations and what did she think her mother would want?  Sometimes just sitting down and listening can uncover a whole lot of data that gives you some direction for the next step.

Recently, an elderly aunt was moved from her care home to hospital where she was assigned a specialist for each failing system.  Her son was quite bewildered by the whole thing, because he understood it was an end-of-life issue.  The providers seemed to be operating in CYA mode.

 I instructed him to approach the hospitalist coordinating her care and request a care conference.  This measure helped clarify expectations for everyone and provided permission to discontinue heroics and focus on comfort care.  She did pass peacefully.

I think sometimes everyone works at cross purposes, because there is minimal communication between patient, family and providers.

[Hannahbanana, BSN, MSN]

On 3/22/2021 at 11:45 AM, Hoosier_RN said:

This is the part of healthcare that I hate. I have to watch, and cannot prevent the stupidity expounded upon patients 

This is why there are hospital ethics committees. Involve them when you run inot a situation like this.

[Hoosier_RN, MSN]

44 minutes ago, Hannahbanana said:

This is why there are hospital ethics committees. Involve them when you run inot a situation like this.

I haven't worked in a hospital in years, or I would. In our dialysis clinic, issues like this go to our clinic manager or regional clinic manager. Luckily, my CM handles these issues well