Whatever happened to the patient's rights?

Nurses General Nursing

Published

Brief scenario: 75 yo, admitted for ulcerative colitis about 3 weeks ago, colon resection with colostomy about 1-1/2 weeks ago, admitted to our ICU, day later necrotic stoma, next day subtotal colectomy with ileostomy, now with comsumptive coagulopathy. Today this pt had a declining respiratory status. He has been lethargic, but very oriented. For the past couple of weeks he has been telling the nurses how tired he is and he doesn't want to fight anymore. His sats dropped in the low 80's and got them back up to about 95 with a 50% ventimask. Asked the patient if he got worse later on, would he want to be intubated, resounding NO! Spoke with the family who said he was not capable to make his own decisions and said they wanted everything done. Called the doc who first, promptly reprimanded me for not calling to increase his O2, then said give him narcan and 20 mg lasix (he had been given some MS about 6 hours before this happened. Gave both, no changes, pt still says he doesn't want intubation. Called doc back who said don't call unless there are respiratory changes, and I said if there are he doesn't want intubation and he is already feeling like he's smothering and can't breathe. Then said it doesn't matter, if he needs to be intubated we'll intubate him. Against the pts wishes? Yes. At this point I broke down crying and he asked how he was doing right now. So I told him, not well, he wants someone to tell him it's OK to die, he's tired, he doesn't want to fight, and he wants peace. He said he was on his way. Gets there, talks with the family, and still nobody asks this man what he wants. He then asks if we can go "have a talk". We go into a private area and he wants to know how long I've been in the unit and then proceeds to say that this man is not capable of making his own healthcare decisions and that if I want to call my lawyer and do something about it go ahead, but he will be intubated if that's necessary. So I tell this isn't about lawyers, this about trying to be an advocate for my pt. I've been his nurse for 3 days now and I don't see that he is getting any better, in fact he's getting worse. He said he had a great level of functioning prior, and he is "salvageable". I asked what he thought his level of functioning would be if he made it through and did he really think this man would survive being put on the vent, he already has no will to get better. He told me he didn't have a crystal ball so he didn't have any idea. If it came to the point where he's on the vent and things are looking like they won't improve, then he'll discuss a DNR status with the family, but until then the man will be intubated if it's necessary.

Then he calls back about 15 min after he left and told the night nurse to not give the family any information about the patients care. If they have questions, he will be by in the morning and they can talk to him because he's tired of having to correct all the wrong information given by the nurses.

So here I am, feeling like I failed my patient. I'm supposed to be the voice for my patient and the eyes and ears for his doctors and nobody's listening, and that is making me hurt and very angry.

I can't sleep, this all just happened this evening (at shift change of course) and I really just needed to get this out.

The nursing supervisor is aware of all this as well as my charge nurse and another nurse who witnessed my patient saying what he did and didn't want.

Oh, and BTW, for whatever it's worth, he has an advanced directive.

you did not fail your patient! the physician and family is. it is a sad situation and i can feel your pain. be proud of yourself for being an advocate for your patient. maybe his family could sit down with him(physician too if around)and discuss this. that way it would be clear what the patients wishes are. i know that it's often the doctor who cannot accept letting a patient die, same goes for the family. but, what really is matters is the person themself. i hope that your patient is doing better so that he can discuss this issue further.

hang in there and keep being the patients advocate,

jude

For the most part, working in ICU, I can tell you that advance directives mean squat. You can have an advance directive, BUT if your family decides they "don't want you to go" or "do everything you can"...... well then that is what is done.

Often we intubate, and then the long process of trying everything begins. I found it frustrating when I first came into the unit, but often the family dynamics are such in these situations that you are dealing with years of guilt and issues that reach far back and way out of the hospital.

You can advocate for a family meeting that is held around the bed of the patient. Often it takes families much longer to come to terms with the situation than the patient themselves.

It can be complex and stressful.

Originally posted by Jenny P

I think the other thing I would do is sit down with the patients' family and show them his advance directives and ask them why they do not think he is capable of making these decisions for himself.

The Family are the ones who have the issues; and they are the ones who want us to violate his rights. Being open with them and then LISTENING to their issues may help resolve some of these problems.

In my opinion, the doctor is between a rock and a hard place himself. If he should honor the patients' wishes against the families' wishes, then he may view himself as being open to a law suit (not to mention that if the patient dies, so many MDs feel they "lost" the patient-- so many doctors were not taught that death is a natural and final process of life).

Obivously you have the voice of experience. It is the familes that are violating his rights. So often this is the case. See my above post.

I've seen many dying patients kept alive, and more than a handful kept alive while they were decomposing. The doctors will tell the families "his kidneys are failing, we will have to dialise him for a few days til he is better." (Pt. already in resp. failure on a vent.) Dopamine to the max weeks ago, and necrotic toes and fingers.....GI: on TPN ....stomach tube coming...... central lines inserted, labs, x-rays, surgeries, LP's, CT scans, consults for cardiac, pulmonary, renal , GI, Infectious Disease, everyone gets a piece of the pie...the pie being Medicare.

It pays--or used to--for sixty days.

Many families were told on the 61st day--I'm serious about this, sorry to say, most famililies were told on the 61st day, "we've done all we can do, there's nothing else to do".

Most died before the 63rd day. (We do not keep them alive when no $$$ is coming in.)

The gals in our ER laugh out the sides of their mouths at how the docs all converge on a patient from the nursing home, the patient is dying, contracted, ....mentally --no one home-- decubitus ulcers, skin and bones, gastric tube, ....no family that cares, these patients arrive & are CPR'd and intubated & sent to ICU..

.. these nurses say, (out of the earshot of the docs).... "there goes another gold mine". All the docs and consultants will mine Medicare for all its' worth for a few weeks, drips, tests, labs, hospital exams & visits, x-rays, surgery, ad infinitum..........

they also say....there goes Dr. _________'s summer vacation!

or if its autumn, "there goes Dr. _________'s familys' Christmas ski trip to Colorado."

American health care for the elderly is ________...your choice.

You did the right thing Sharkadeli, but you might want to pass on taking care of this docs patients in the future. He can and will have you fired in a New York minute. All he has to say is you give the patients' and their families too much info without his consent.

For future use, it is best to give familys as little info as you must. They seldom hear exactly what you are saying, it is kind of like that old childrens game, where you whisper something to someone and it goes around until by the time the last person hears it, it is nothing like what was originally said. Families will tell the doc, (when you are not there) ""THE NURSE SAID ______

___ ____ !!!"" It puts the doc in the hotseat. I always tell the family very general info and very little info. Primarily because, I do not know the patient well enough to elaborate, usually have not read the chart, do not have lab results and x-ray results, etc. at hand, and it isn't my job or business to reveal those anyway, and I'm certainly not qualified to "give an opinion". That is the docs job. And the family has the responsibility to call the docs office, answering service or wait at the hospital til doc makes rounds. I encourage them to "write all your questions on a sheet of paper. When the doctor comes, he will answer all your questions...IF you have them in writing."

Passing thru

You just made one of the best arguments I have read in a long time for universal health care.

There are certainly no set days ( as you mentioned =60) in universal health care. Each time it is patient driven, many of our patients never make the 60 day mark and if they are still alive, they have long gone to a step down unit or floor for rehab.

Reading your post..... when you say you "never reveal info etc.... because you don't know you patient that well"...... do you work in ICU? If you do, I find it astonshing that as a RN in ICU ( if that is what you do ) you would not know your patient intimately. While it is not up to us to make a diagnosis, as RN's in the ICU I work in, we are expected to know the CAT scan results, how the chest X-ray looked today, meds, blood test results etc. Certainly when they walk by and drop the blood results on my chart, I am expected to know how to read them, what to worry about etc.

I disagree with your comment about families. Certainly let the Doc tell the families the diagnosis, etc.....but never stone wall families....they count on us for all kinds of info.

And another thing, I would never talk to families like children. Sure there have been times when I had to make things simple, but believe me, I have dealt with very sofisticated family members, who write down things we say, refer back to them, ask follow up questions.

If families want to know, I always tell them what kind of day-night their family member has had, if they are responding, if they are sedated, if they are comfortable ( and please try to make sure they are), and I always explain the whole ICU experience....which is one that is different than any other part of the hospital.

Palliative care does take place in ICU ( all the time ) and families are a BIG part of that scene.

Weak? I think not. I think if anyone was weak it was the doctor who couldn't face the family to tell them that heroic means does not mean the patient will be just as they always were.

Kris

JMP: Don't be astonished. When I wrote that line, I was thinking of the usual position I am in. I receive a report on 8 patients I've never seen before and walk right into one hour of visiting families. I haven't picked up any of their charts. The majority of the time I have received a half-orificed report from the day nurse who "read" the kardex to me and hasn't much of a clue as to what's going on with the patients as the Patient Care Assistants did the actual patient care and the nurse for the most part passed meds//documentation//knows what happened on All MY Children and General Hospital, managed lunch and "only 3 cigarette breaks", went to an inservice and then to x-ray with another patient.

So, I do not stick my neck out and assume I know what is going on because 1.) I've just received a crappy report and 2.) the diagnosis on the kardex usually tells 1/4 o the story and the patient is being treated for something totally unrelated to the kardex diagnosis, ....but the "official diagnosis" , ala "chest pain" allows the patient to stay hospitalized longer and pays better.

Try discussing , not critiquing, judging, one-upping.

SIGH........ I know you are the greatest.

Try to show some consideration for us inferiors who are just doing our best.

Those Canadian docs are the best also. You save them a lot of communicating time I'm sure.

The system failed this patient and failed YOU. We have a system that practically demands advance directives, leads patients and sometimes us to believe that they are legally binding. YET they ARE NOT binding and there fore WORTHLESS.

We have a system that allow and even encourages unrestraind law suits. The living can sue; the dead cannot. There fore the living family can sue after a patient is dead.

Never mind the patient's rights are violated by keeping his body "alive," through artificial means and against his wishes.

Until an advance dirctive is leagally binding we will have doctors in fear of families who might seek blood money if their family member is allowed to die in peace.

The advance directive is a shameful sham. It is made even more shameful because we encourage its use and there fore promote and perpetuate the lie.

The last time you had a patient sign one did you explain that it was not legally binding?

I bet if a statement to that effect were written on the advanced directive people would be up in arms and demand that it become bound by law. Some would even decline to write one all together, asking what would be the point.

Bottom line you are dependent on your next of kin to honnor your wishes. The sad thing is many times a Doc or hospital will be more interested in what other family members want than that next of kin who tries to honnor the patient's wishes.

Specializes in obstetrics(high risk antepartum, L/D,etc.

Please remember that, without the patient or his legal representative's permission, you cannot give ANY informatioin to ANYONE according to HIPPA law. This includes family, as well as neighbors, best friends, and someone who read about him in the newspaper. The law is very strict and I suggest you read it if you haven't already. It is a federal law and the penalty for breaking it is severe.

Specializes in CV-ICU.

Passing Thru, that was some of the crassest garbage I've ever read on the American medical care anywhere! I am glad I live no where near you (I don't even know where you are; but it must be a foreign part of the country and a LONG way away from me because no one I know has that type of mentality here! The idea of docs keeping a pt. alive to suck Medicare dry; and nurses etc. putting up with (and supporting!) it!

What a pile of RUBBISH!

Originally posted by Jenny P

Passing Thru, that was some of the crassest garbage I've ever read on the American medical care anywhere! I am glad I live no where near you (I don't even know where you are; but it must be a foreign part of the country and a LONG way away from me because no one I know has that type of mentality here! The idea of docs keeping a pt. alive to suck Medicare dry; and nurses etc. putting up with (and supporting!) it!

What a pile of RUBBISH!

Couldnt agree with ya more Jenny. It makes you wonder if passing thru has even "passed thru" an ICU. Passing thru, you clearly have NO IDEA what you are talking about.

Originally posted by New CCU RN

Couldnt agree with ya more Jenny. It makes you wonder if passing thru has even "passed thru" an ICU. Passing thru, you clearly have NO IDEA what you are talking about.

Yes, I agree with you also. NO CLUE, passing thru.

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