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?
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?
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.
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.
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.
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.
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.
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.
When my family member (who had a DNR) was actively dying, one of the docs tried to get him to authorize a colonoscopy. He went into the room, after visiting hours when all of us were gone, and tried to get an incoherent man to sign off on a completely unnecessary test. Beware.
See if you can find what Attorneys represent the Hospital. Send them a copy with cover letter explaining that Dr/Staff pushing for care in violation of filed forms. The signs, above head, footboard or whiteboard, and door to room. Bring your own masking tape and colorful paper & marker.
Call nightshift RN in charge of your LO to let her know DNR is at Nursing Station.
Generally Nursing station, hospital administration & signs will do the trick. Their administration and lawyers will do the heavy lifting from there!
The body dehydrates in only a matter of days and its a very cruel and painful way to die
All will be well. Trust yourself.
Im sure the Angels are watching over you at this time:)
This is *not* the same thing as being stuck in the middle of the desert, dehydrating. A profoundly damaged body/brain experiences lack of food/fluids in a different way. It is not a cruelty. Google will give you what you tell it too, and for devastating stroke cases, I found much myth blended with accurate info. Too much. Better to talk to the neuro. The doctor should be able to educate you on the science involved, but Salish explained it very, very well.
And hospice would be able to explain how they would keep your father as comfortable as possible. They may or may not think to tell you this, but a diseased body often experiences end of life differently than an old body that is done. My FIL, in his very old age, kind of drifted into a coma and slept his way to the end. My mother, however, did not have what I would call an “easy” time in hospice because of the damage to her brain and it’s connections (fevers, restlessness, etc.) The staff noted that this is often the case with stroke, cancer, etc.
I wish someone had told me that a bit sooner, so I thought I would share with you here. Obviously, everyone is different. Take whatever is helpful and feel free to leave the rest... wishing you well.
The person who stated that dehydration is "a non painful event when there are underlying degenerative changes" is mistaken
Thirst is ongoing & persistent. Unlike hunger which diminishes until it disappears when it is ignored.
In dehydration all the mucous membranes of the body become very dry & start to crack...the breathing becomes very labored, vision is impaired as the eyes dry & sink into the skull, confusion, lack of energy & irritability occur.
Its a cruel way to die.
You can keep a saline line going even if you decide to remove the feeding tube
Please consider that the herb MORINGA has been shown in studies (& in patients I have had) to resolve a thrombus.
My suggestion: 1tspn Organic Moringa Powder (Amazon) mixed with half a cup of Distilled Water added to his feeding tube twice daily
Im sure you will probably not get medical approval on this from his attending.
However, you can google "Moringa Oleifera Lam: " Protease activity against blood coagulation cascade"
This is a medical study so may be a little complex reading. However, the take away is that Moringa has been proven to regulate the livers cascade of enzymes that regulate blood clotting and wound healing. And Will resolve the thrombus when given twice daily
You are at the point of withdrawing life supports, so you have nothing to lose. And everything to gain.
Summary
Keep him hydrated with a saline line regardless.
2 tsp's Moringa Olifera in 1/2 cup distilled water daily