Advice please: Withdrawal of feeding tube

[Clubsingr28]

Hello Nurses,

I am having a serious personal inner struggle with a current issue at work. "Mrs. G" (who is 79) had a CVA last year with resultant hemiplegia & dysphagia. Subsequently she became a LTC resident of mine after her hospital stay. She came to us with a PEG and receives bolus feeds. She is cared for by CNAs and hoyered into a recliner where she watches TV, listens to her classical music and reads the paper on a daily basis. She is able to say a few words such as "yes, no, not now, oh, ok", etc. Actually just recently has been saying a few new words. She does not have dementia but her husband has been her medical POA. She was doing so well we had speech consult with her just last week and she passed her 1st swallow eval. with flying colors. (Mr. and Mrs. G are financially wealthy people, the opera, theater, and fine dining were a BIG part of Mrs. G's enjoyment in life)...

So, the VERY NEXT DAY, her husband, (the healthy one who lived at home) passed away. Her husband was her biggest advocate. I never even had the chance to tell him how well she did during the swallow eval, he would have been excited)-- Now her 2 sons, who have hardly been in to visit her now have medical POA. (One I'd never met because he admittedly has only been in once in the past year and the other one maybe 3-5 times over the past year)-

Well yesterday the came in to tell "Mrs. G" that her husband had passed away BUT when they arrived she was not feeling well. They asked me what was wrong and I told them she had a UTI- They talked between themselves a few minutes then asked if there was a doc they could speak to.. I responded yes then went to get her. 30 minutes later the MD came to me with tears in her eyes and handed me a new Advanced Directive and told me to D/C Mrs. G's TUBE FEED FORMULA AND that we would NOT be starting the MACROBID so NO TX FOR THE UTI EITHER.... then she said the sons want to put her on hospice.

1) Mrs. G- is not aware of any of this...

2) She was medically stable other than the UTI

3) She does have some quality of life, enjoys music, company, newspaper, etc..

4) She had JUST started eating small amt. during her eval- MD d/c'd speech consult too

Nurses I need your opinions, PLEASE, and ALL will be respected...

Thank you!!

Kelly, RN in NY

[Susie2310]

I am wondering if it is possible that the family are just genuinely ignorant of their family member's medical condition, and (due to lack of knowledge), and possibly other outside pressures, perceive their family member to be very seriously ill and unable to make medical decisions for herself, with no quality of life and a poor prognosis. Perhaps educating the family about their family member's condition and progress made, and that the care that their family member is receiving is intended to further their family member's quality of life, and that their family member appears to have quality of life, and that the burden of receiving the care does not appear to outweigh the benefits/potential benefits, would be helpful. I agree that bringing this case before the ethics committee would be a very good idea.

On a separate note, I do notice certain schools of thought appear to actively encourage elderly people (usually with a variety of chronic and/or acute medical problems) to consider choosing hospice sooner rather than later, and various articles have highlighted that opportunities for curative care can be missed in some cases by making this choice. It is becoming more common to read and hear about "the outrageous cost to Medicare of end-of-life care." I think it is very easy for the public, and I include health care professionals too, to be very confused about all of the above. I wonder if perhaps that is what is happening, or is part of the situation that the OP is referring to.

[Whispera, MSN, RN]

"projected decline" d/t withdrawal of the feeding tube in addition to the (UTI) actively untreated infection- or something like that... "

What's written above couldn't be the diagnosis given for admission into hospice. Hospices have very specific requirements for their diagnoses and withdrawal of feeding tube....infection don't fit.

A feeding tube might be withdrawn during hospice and a UTI might be treated, whatever gives comfort and takes away discomfort. Feedings are withdrawn when they are uncomfortable in hospice, not for other reasons!

The brothers need a serious talking-to so they understand everything more clearly. Maybe they are thinking they're doing what mom would want and just don't understand all the implications. I can see that they might be very shocked at what they see since they haven't been there much. They're also in the early throes of grief for their dad. I think they're overwhelmed.

Keep on advocating. There's no way you should discontinue feedings or not treat the UTI until more details are figured out!

and...as far as choosing hospice sooner rather than later...it seems the choice might be palliative care as a possible precursor to hospice care. In palliative care treatment is done, not withdrawn, unless the patient, if competent, refuses...

[freefalling]

Just to muddy the waters... What IF, instead of

a 79 yr old woman s/p CVA with no long-term hope of an independent life with

- limited mobility (requiring hoyer lift in/OOB into a recliner where she watches TV, listens to her classical music and reads the paper on a daily basis)

- the need to be pushed around by others in a w/c for the rest of her life

- limited ability to express herself (requiring extra effort on the part of those around her to understand her wants/needs/desires), but may be able to say a few words such as "yes, no, not now, oh, ok", etc. and recently began saying a few new words

- inability to feed herself (requiring the assistance of others to manually feed her or the use of a fdg tube)

- requiring assistance with incontinence

was actually…

a 12-year-old girl with a rare genetic mitochondrial disease with no long-term hope of an independent life with

- limited mobility (requiring hoyer lift in/OOB into a recliner where she watches her Maleficent DVD, listens to her Mylie Cyrus CD and has help reading her Facebook page on a daily basis)

- the need to be pushed around by others in a w/c for the rest of her life

- limited ability to express herself (requiring extra effort on the part of those around her to understand her wants/needs/desires), but may be able to say a few words such as "yes, no, not now, oh, ok", etc. and recently began saying a few new words

- inability to feed herself (requiring the assistance of others to manually feed her or the use of a fdg tube)

- requiring assistance with incontinence

(the video is something else) Father's pageant dance with his disabled daughter touches hearts - Parents - TODAY.com

I agree with Susie2310, sometimes we may be too quick to "hospice-ize" people and forget who they are.

[Esme12, ASN, BSN, RN]

Just to muddy the waters... What IF, instead of

a 79 yr old woman s/p CVA with no long-term hope of an independent life with

- limited mobility (requiring hoyer lift in/OOB into a recliner where she watches TV, listens to her classical music and reads the paper on a daily basis)

- the need to be pushed around by others in a w/c for the rest of her life

- limited ability to express herself (requiring extra effort on the part of those around her to understand her wants/needs/desires), but may be able to say a few words such as "yes, no, not now, oh, ok", etc. and recently began saying a few new words

- inability to feed herself (requiring the assistance of others to manually feed her or the use of a fdg tube)

- requiring assistance with incontinence

was actually…

a 12-year-old girl with a rare genetic mitochondrial disease with no long-term hope of an independent life with

- limited mobility (requiring hoyer lift in/OOB into a recliner where she watches her Maleficent DVD, listens to her Mylie Cyrus CD and has help reading her Facebook page on a daily basis)

- the need to be pushed around by others in a w/c for the rest of her life

- limited ability to express herself (requiring extra effort on the part of those around her to understand her wants/needs/desires), but may be able to say a few words such as "yes, no, not now, oh, ok", etc. and recently began saying a few new words

- inability to feed herself (requiring the assistance of others to manually feed her or the use of a fdg tube)

- requiring assistance with incontinence

(the video is something else) Father's pageant dance with his disabled daughter touches hearts - Parents - TODAY.com

I agree with Susie2310, sometimes we may be too quick to "hospice-ize" people and forget who they are.

In my eyes they are no different. Each deserves to be treated with dignity and respect and given the opportunity for treatment appropriate to their diagnosis and disease. They also have the right to refuse....it is just that this family is choosing for her which in this case might not be appropriate.

[JustBeachyNurse, LPN]

When my dad was hospice, at the end few months we did not treat UTIs if no s/s discomfort, essentially a febrile (

Not the same scenario as the OP as when my mom elected hospice my dad was barely responsive thanks to a healthcare team error that resulted in additional irreversible brain damage

[ktwlpn, LPN]

Can't wait to here what has transpired today....

[trishmsn]

First and foremost, this OP needs to be congratulated for being such an involved and caring patient advocate!!

That said, let me state that I spent a decade in hospice, and feel strongly about not prolonging the dying process, especially with aggressive treatments and artifical nutrition and hydration when the body clearly cannot processs it. I am 101% for a peaceful and well managed end-of-life plan, focusing on patient and family needs in all realms...physical, spiritual, psychological, and cognitively. It is about living one's best until death.

BUT...this is NOT what is going on here!!!!

This patient is being railroaded into an early grave, for no apparent reason. The UTI is an acute illness (and one I could see managing without abx in a TERMINAL situation...) and she has NO life-limiting diagnosis, except old age and perhaps a swollen bank account! The CVA is history, and the limitations she has do not threaten her life.....she could manage with assist for years and years!

OP....keep fighting for this woman, and bless you for caring enough to pay attention to her needs and wishes, and not ignoring your own "horse-crap" meter blinking "Red Alert".

[morte, LPN, LVN]

next of kin is not the same as POA. doesn't being a POA require legal paper work? they would have to get a lawyer and be appointed, UNLESS dad had it written so the sons took over at his death? until I saw the paper work, she would be getting treatment.

[Clubsingr28, ASN, RN]

Hello all!!

The past 2 days have been truly exhausting and I can't express how grateful I am to the nurses in this group who took the time to respond with amazing info and insight. You have all been such an amazing resource for my resident. Through a combination of reading your encouraging words and informative posts and by researching TONS of info r/t this topic on the web, I was able to gather my thoughts and my emotions so that I'd have the confidence and strength to make a well informed argument for my resident.

When I left work Friday I KNEW I had an uphill battle ahead of me when not only the doc gave up quickly and the 1 person I should be able to go to and count on, (my DON) made the comment "well I wouldn't want to live on a feeding tube" and "I don't know why her husband ever agreed to that in the 1st place"...This DON hardly EVER interacts with ANY of the residents. She stays as far away from them. She is not approachable, she gossips with staff, and frequently makes unprofessional comments about her staff.

The 1st thing I did> was go see my resident yesterday morning. She looked a little withdrawn and sad but she didn't look bad (physically)- She was saying "my my my" which she says when she trying to tell me something- (usually RUE pain)- So I asked her if she had pain and she said "no, no"- So I said "No pain?" She pointed to her mouth and said "Yes Yes"-- I was thrown for a sec. (She keeps me on my toes!) I then said, "Your mouth/tooth hurts?"-- she "No No!" I said "Oh, wait! You're hungry??"" She said "Yes, YES!"...

So that's where my story begins, that was the fuel I needed. (Almost feel like I could write a novel about yesterdays unfolding of events). I knew I was going to war (as a 1 man army and little ammunition). I work in a very small facility with some very closed minded people, nurses that are mute because it doesn't really matter or b/c they're too afraid for their jobs, which of course to an extent I understand, I need my job too, I have a family to support- so I knew I had to tread lightly, BUT, I knew I HAD to TREAD.

The short of it is: I went 1st to my RNP- She was off Friday but I knew I could approach her--once I did it set the wheels in motion. She got to my Director, then the MD came in...After a very intense, heated and emotional debate.. (btw my DON thought things were fine left as they were) and she verbalized she felt my res was "better off gone"... I showed no disrespect but I did become emotional after she said that and because I was met with so much resistance, things became heated and I used the word "starvation" I told her how I felt, she reprimanded me for using that unacceptable "VERBAGE"... SO I asked her what the "politically correct" term was? She told me I was too "emotionally involved and asked me to step back--

Anyway there's soo much to this story, BUT in the end the MD reinstated 3-5 small meals daily and btw they are not even sure she qualifies for hospice so they may allow the speech/swallow evals- Her 250mls of H20 Q shift was reinstated along with some of her cardiac meds. (b/c they had D/C'd EVERYTHING on Friday! I

It's not exactly what I would have wanted but it will sustain her for now and I will plug away a little at a time. As far as the UTI, she's asymptomatic, afebrile...

FOOD=I fed her myself both yesterday and today- she did very well considering-AND, NO coughing. (my biggest fear is aspiration pneumonia b/c I know the family has said no abx therapy at this time)-- but that is my current work in progress.

Oh and let me say: ....Some of you mentioned going to the "ethics committee" and some of you even said "go to my DON"-- I thought to myself, "Wow, do nurses really have these resources available to them at work?" Maybe I need a new job......

Thank you so much again for your support during a very difficult time for me, you were here when I literally felt I had NO ONE else to turn to.

xoxo

[Clubsingr28, ASN, RN]

I will have to take another look at paperwork and I would think MD would KNOW this stuff right BUT I believe my resident just had her husband's name and it said POA next to it. Then there were "contact phone #'s below with son's names listed- I don't think I ever saw POA near sons names. Question is this: Once the husband passed didn't sons automatically become POA by default?? or no?? I need to learn much more about this.. thank you

[JustBeachyNurse, LPN]

I will have to take another look at paperwork and I would think MD would KNOW this stuff right BUT I believe my resident just had her husband's name and it said POA next to it. Then there were "contact phone #'s below with son's names listed- I don't think I ever saw POA near sons names. Question is this: Once the husband passed didn't sons automatically become POA by default?? or no?? I need to learn much more about this.. thank you

No they become next of kin by default. POA is a legal declaration. It is not a default or transfer. If she was truly incapacitated the court would report a guardian ad litem to advocate on her behalf. I know someone (happens to be a nurse) who is called upon as an "independent third party" by the ombudsman and courts to serve as a court appointed guardian in such cases. The ombudsman is there for just this reason as is the chancellors division of the courts. Look at your facility patients bill of rights. The information should be there.

If there is no legal declaration of POA it does not exist. Many inappropriately declare next of kin as POA. When my dad was ill I was declared as NOK for emergencies and consents to alleviate the burden off my mother. I have POA for her accounts should she become incapacitated. And as her eldest NOK for medical decisions with a legal document declaring me as medical durable POA should my siblings emerge from their homes and try and take over.

Generally NOK for an adult is spouse, living parent, eldest adult child to youngest adult child, siblings and then cousins/aunts/uncles/grandchildren etc. NOK is usually for notifications and sometimes informed consent.

[cardiaccath456]

Thank you for advocating for your patient!!! You are awesome!!!