He has a DNR that states No Feeding Tube, no CPR etc. The hospital speech Therapist did a swallow test and he can not swallow. They have a feeding tube with nutrients being administered. I have discussed with his nurses what his wishes are and to review his DNR. He has lost the ability to move his left side and he discussed with me frequently that if he was to have a stroke like his wife (my mother did) he does not want to lay in a bed for months. What can I do to force the hospital to respect his wishes?

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One more thing, the feeding tube decision is a juncture. I assume he has a nasal-gastric and that you will shortly have to decide on a PEG tube. Getting the PEG tube out later will be a much harder process than deciding against one now.

By deciding against one, you aren’t “killing him”. The stroke did extensive damage and now it is a matter of letting the diseased body naturally go.

After the tube is placed, someone removing it gets messier.

You may want to start looking for local hospice facilities. The doctor would basically discharge him to the hospice where you and your family can walk him home in a more peaceful environment with supportive and knowledgeable staff for your dad and for you.
Helpful Answer (6)

So there is lots of holes in your information,. To make a good decision you need to look at what is happening in a time frame.

1. Did he just have surgery?
2. Is the feeding tube one that goes through his nose to give nutrition? Short term solution.
3. What is the prognosis with rehab?
4. Will he ever get better? Needing a permanent feeding tube means he will most likely not improve to have any quality.

Has this all just happened in the last week, month, several months?

I have a dear friend that had a stroke at 84 years old, paralyzed on the left side, could not swallow and could not talk.

After 3 months in a top of the line rehab facility you would have never known he was so sick after the stroke.

There is a difference between keeping a dead body alive and providing the care needed for recovery. Please find out what it is for your dad. Only his doctors and therapists can give you this information, not nurses. Nothing against them but they are coming from a different angle then the drs and therapists.

I believe that quality trumps quantity but if it is a short period for my body to recover, please don't pull the plug.

I'm with your dad, if this is it, laying in bed, then please let me go.

Hugs, this is a tough situation but you know his wishes, now get educated so you can proceed with confidence that you are making the right decisions.
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Speech Pathologist here. A few questions. Did your SLP say he cannot swallow at all? Or could he tolerate specific consistencies (i.e. nectar, honey, pudding, puree foods)? Is he alert at all? If the answer is no to these questions, then your dad has every right to have his "no feeding tube" wish followed and live the rest of his days as he wanted. However if he's alert and able to tolerate anything, then there is a good chance with rehab his swallowing will improve. And honestly, even if he couldn't tolerate anything by mouth right now, if he is alert and able to follow directions he could do rehab and his swallow could still improve. A lot bears on his level of alertness. And previous posters are correct, an NG tube (through the nose) is very easy to remove and even put back in and is often used until the SLPs have made their recommendation. I've seen people with NG tubes in for several weeks, so it's a good option while you wait to see what level of recovery is expected.
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motherofdreams Nov 2018
THANK YOU.... My dad did remarkably well, from paralysis, no swallowing, no talking, no walking, to a complete recovery.
Who signed for the feeding tube to be inserted? Or is it a naso-gastro tube?

Is the speech therapist expecting his swallowing ability to improve with time and therapy? A temporary situation is one in which a fading tube might be a good short term fix.

Call the Patient Advocate's office at the hospital.

Talk to the doctor in charge of his care at he hospital about a hospice evaluation.

Is your dad able to express his wants?
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I just went through this recently, but with no paperwork.

This is one of those horrible junctures where you are choosing from a whole pile of crappy choices. Mind reading. Feeling like you are playing God. I am so very sorry you are going through this. I would wish it on no one.

How old is your dad?

I assume he can’t make his wishes known even with a thumbs up or down or a nod. Is he still in the neuro ICU? Does he have a neuro-hospitalist? If so, have a sit down. Be calm. They need to know you are a reasonable person, not a potential lawsuit in heels, lol. Make sure you keep your father’s wishes at the forefront. Don’t ask the neuro what his “chances” are. Instead, ask what - in their experience - is typical of this level of damage. What will the next 6-12 months likely look like for him?

My guess is that, approached like that, they will say that someone in your dad’s position (again, only going on what you have mentioned... I am not a doctor) typically cannot handle rehab and will need to go to a nursing home. There, he would likely have progressive infection activity (specifically UTI’s, pneumonia, etc.) resulting in many trips to the hospital, until they are ultimately taken by an infection. This is especially true with the lack of swallow/aspiration.

Try to convey how he wished to live. My mom’s neuro asked about her “threshold”. He said that - for some people - they are ok with living if they can lay in a bed a watch a ball game, which surprised me. Or eat a steak. Or be able to talk to their loved ones. If you can explain that threshold to the neuro, it might help them help you.

You are lucky in that you know what he wants because he has told you specifically. And you have documentation. You obviously have his best interests at heart. Doctors in the specialty have the leeway to do what is in the “patient’s best interests” so if we have the details right, his doctor should be able to advocate for his wishes as you have presented them.

If not, I would escalate up, but ONLY after working with his doc and trying to get in the same page.

Hope this helps.
Helpful Answer (5)
sunshinelife Nov 2018
a "potential legal case in heels" LOL!!! u should be a writer...great word pics
Agree with 499. If a DNR is in place they have to honor it. My Moms Medical POA was like a living will and said no feeding tube to prolong life.
Helpful Answer (4)

I'm very sorry that you are going through this.

When did your father have the stroke? If it's only just happened, it's worth waiting to see what recovery the next few days will bring. Do you have a formal review scheduled with his doctors? - if nobody's set that up, keep pushing.

Please let us know how he's doing. And for goodness' sake look after yourself, too - this is such a horrible time for family members. Hugs.
Helpful Answer (4)

Why are you speaking to nurses? They can pass the info on but have no power to discontinue. It sounds like the feeding was temporary until things could be determined that he could not swallow. Your next step is to speak to the social workerand to request palliative care. Bring the document which sounds like a health care directive. If there is no progress, the next step is an ethics committee. Every hospital has one.

That said, in the scheme of things, it is just a short time of prolonging life. When the feeding is stopped, it won't take that long. You may be asked if you want to stop all fluids
Helpful Answer (3)

The place to start here is with the doctors. He will have a Hospitalist of some sort (often but maybe not always by that name) who is his Primary in the hospital but with a stroke and based on what you have said the Neurologist is running the show because the primary problem in in his or her specialty. You need to talk to each of them, get the run down about what is happening and what their plan is. During that conversation make sure they are aware of your dad's wishes and that he has then formally in a DNR and that hard as it is you want to honor his wishes. You may learn that he isn't at that stage and all they have done are temporary procedures to support him while his body heals or you may find they are either unaware of the DNR (message didn't get to them) or there is some reason the hospital can't follow it (should be possible to correct). It sounds like you haven't yet gotten one of these updates from his main doctors and that's a shame, I'm sorry that's the case. They can be very had to track down after they do their rounds in the morning because they have surgery and office hours amongst other things going on but if you can make sure you are visiting him first thing in the morning or better yet ask the nursing staff when each of them typically does rounds (most doctors have a pattern and the floor knows what it is) or at least in some hospitals the nurses station gets notice about when a particular doctor is due in each day or has a way to find out.

Do be careful, depending on the hospital, there may be your doctors resident or student coming in first, the floor resident coming in and any number of variations. This can be informative, ask them questions and listen to what they say but don't bother having the more in depth discussion with them it will be the actual neurologist and hospitalist making decisions and who have the concrete answers. You have to be a bit of a detective when a LO is in the hospital, not easy given the emotions and circumstances but I will say there is more and better info available now than there used to be you just need to know how to chase it down sometimes.

The other resources you have are your dad's regular medical team, his primary and any specialists like a cardiologist and or neurologist. Specialists or someone from their office may even come in if they have privileges there and will be involved in decisions and care so make great resources but they probably wont be the ones running things at the moment so that person is still key. Hang in there and take care of yourself too, my thoughts are with you.
Helpful Answer (3)

The best answer is to get a palliative medicine consult. They will listen to you! They will help you understand your dad's condition (it seems you understand it perfectly!) and help you discuss your dad's values and wishes with his care team.
They can advocate for your dad with the neurology/other teams to set limits based on your dad's documented wishes. Given that they have already initiated a therapy (the artificial feeding) that he has indicated he would not want, you may consider setting a timeline for it. i.e. you could say that if he is not improved in x days (weeks?), it would be removed.
If there is no palliative care, ask to speak with someone from the ethics team--every system has some access to an ethics board. Also, find out who the local hospice providers are (you will need to consider where your dad could be moved to with hospice supporting you to provide end-of-life care) and set up an informational visit with them so you can be informed /prepared about the plan going forward.
You haven't said what state you are in, or what area, but you might be able to reach a palliative care team in a neighboring area if your hospital/community does not have it.
Good for you for wanting to respect you dad's wishes, to focus on his goals, to be his champion and advocate. As hard as it is, and no matter what attitudes you may encounter (why would you want to help your dad die?), you are doing the right thing.
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