Futile Care. Dead is dead.

[Trauma-tizedRN]

One of the most challenging ethical dilemmas for me. I just HATE participating in it. We get so many patients in the ICU setting that prove to us in so many ways that it is JUST TIME TO DIE! But no, for whatever reasons ie: Doc is a super god..saves everyone, doc is too wimpy to call it to a stop, families running the show and docs letting them...and other various reasons, we get to come to work everyday and poke and prod these poor souls. Costs the system alot of money too. I don't go home feeling like a good nurse when having to do this. In fact I feel really bad. I am pretty aggressive about it and corner these docs and families for a "chat" to help bring some reality to play, but sometimes have to get ethics involved to make any headway....docs don't appreciate it either. But geez people...we are maintaining dead or dying people with all the bells and whistles, for weeks on end. Can't we just let people die when they ARE. Treat pain and suffering....not cause more. Never a good day when you get to work and the buzz phrase on the unit is "I see dead people"

:angryfire

[aimeee, BSN, RN]

During the time I worked in the HIV/AIDS field, I found it quite puzzling that often it was the families of those who'd been suffering a terminal illness for a considerable period of time who were most reluctant to discontinue futile treatment. Intuitively, I would have expected the families of those who'd suffered unexpected, catastrophic events to be the ones who had the most trouble "letting go", and yet time and time again they seemed to cope far better (perhaps because they were buffered by shock) than families who'd had a long time to prepare themselves for the inevitable.

Has anyone else noticed somethign similar?

I think when they have gotten that terminal diagnosis and then received numerous bouts of therapy that have made things better for a time, they find it hard to believe that the patient won't improve again. This is particularly true when they outlive their prognosis. They think, "the doctor was wrong before, he may be wrong now".

[mattsmom81]

I relate 110% to all the posts here. We shoot suffering horses and euthanize our beloved dying pets but look what we do to our human family members.

I too have been accused by doctors of overstepping my bounds but I have a policy of trying to 'reach' family members with the realities of futile care, the undignified aspects of codes, the ravages the body endures in our efforts to 'save' at all costs..

Recently had such a sad experience...a woman in her 50's perfed her bowel and over the next few months endured surgery after surgery to clean out abcess, etc. She septic shocked and MSOF'd, chronic ICU psychosis, improved a short time only to fail and need surgery again and the whole roller coaster ride repeated. Her poor husband. He watched as she wasted away and died inch by inch, surgery after surgery to cut out more bowel. Docs couldn't give upcuz of her young age..and family couldn't bear to set any limits either. She was still 'alive' but looked like a yellow trached skeleton with hanging edema and eyes like Aushwitsch prisoners. Hubby told me he wanted to carry her out and drive them both over a cliff. I just cried with him. I cry thinking of them now. Nah...I'm not burned out am I.

This situation has a different twist than the brain death/vegetative state and some may not consider this futile care, but I guess one has to see the ravages the body and soul endures to understand...how and when do we draw lines regarding the quality of a human life? Many doctors will not leave their safe 'perch' inside the science of what they do to see the other side.

[debbiemig]

Last December my hubbies dad fell off of a ladder in the garage and onto his head.He was airlifted to the trauma center where he was placed on life support. EEG showed no activity( there was brain matter at the scene). He had very clear advance directives drawn up by a lawyer a few years prior.After a week, the family was brought together to discuss taking him off the support. My husband and his brother were against it. My sister in law and I tried to make them understand that he went to all the trouble and expence to make his wants known." He really did you a favor and took the desicion away from you, HE made the desicion already!"The grand daughters finally convinced them to let him go. So even with very specific advanced directives there is still an issue. I told my daughter that SHE was in charge if anything like that happens to me. NOT my husband. He'd keep me alive forever no matter what! My desire to be creamated is also an issue with him, but that's another story!

My brothers well 100% against letting my dad go. My sister and I were for letting him die in peace. We knew that nothing could be done. I was accused of wanting him to die. This was probably because my brothers were not ready to let him go. They were just not comfortable with the idea and they were not ready. Big time denial.

To make a long story short, my dad was in and out of ICU. The only thing keeping him alive were the ICU drugs. He would get "better", according to my brothers(no quality of life), go to the floor, get d/c to a nursing home, go home, get sick again in less than 72 hours, back to ICU, back to the floor....you get the picture.

This went on for a year. In and out of hospital, in and out of nursing homes. The fire department guys and my dad got to know each other very well.

This whole ordeal came to an end when I asked one of the intensivist md's I worked with at another hospital (and who had priveleges at this hospital)to intervene. My dad and bros needed to hear the truth. No sugarcoating. My brothers never really accepted the reality of the situation. Anyway, by the 50th or so hospitalization, when my dad had to be admitted to the hosp., he was admitted to a medical floor. "Finally", I thought "someone out there has gotten it". Let him die in peace. Keep him out of the ICU. The nurses and docs have done everything that they can.

His last days were painful. He was tired. He died May 9, 2004. Mother's day.

[Trauma-tizedRN]

I relate 110% to all the posts here. We shoot suffering horses and euthanize our beloved dying pets but look what we do to our human family members.

I too have been accused by doctors of overstepping my bounds but I have a policy of trying to 'reach' family members with the realities of futile care, the undignified aspects of codes, the ravages the body endures in our efforts to 'save' at all costs..

Recently had such a sad experience...a woman in her 50's perfed her bowel and over the next few months endured surgery after surgery to clean out abcess, etc. She septic shocked and MSOF'd, chronic ICU psychosis, improved a short time only to fail and need surgery again and the whole roller coaster ride repeated. Her poor husband. He watched as she wasted away and died inch by inch, surgery after surgery to cut out more bowel. Docs couldn't give upcuz of her young age..and family couldn't bear to set any limits either. She was still 'alive' but looked like a yellow trached skeleton with hanging edema and eyes like Aushwitsch prisoners. Hubby told me he wanted to carry her out and drive them both over a cliff. I just cried with him. I cry thinking of them now. Nah...I'm not burned out am I.

This situation has a different twist than the brain death/vegetative state and some may not consider this futile care, but I guess one has to see the ravages the body and soul endures to understand...how and when do we draw lines regarding the quality of a human life? Many doctors will not leave their safe 'perch' inside the science of what they do to see the other side.

I had a patient quite similar to this..in addition, CRF with hemodialysis for the prior 2 years. Why!?

[gwenith, BSN, RN]

Think on this - I recently found a research article that said that 1 in 5 deaths in the USA occur in ICU. That is not 1 in 5 ICU patients die that is 1 in 5 patients in the population die in ICU. What happened to natural death???

[Blackcat99]

Think on this - I recently found a research article that said that 1 in 5 deaths in the USA occur in ICU. That is not 1 in 5 ICU patients die that is 1 in 5 patients in the population die in ICU. What happened to natural death???

Yes natural death is no longer allowed. In the 1970's it seemed that the doctors would allow old people at the LTC's to die a natural death. Not anymore. Now it seems we are always sending people to the hospital or they are always receiving very aggressive treatment to keep them alive.

[devi, ADN, BSN]

This thread reminded me of something one of my instructors recently told our class.

She told us that even if someone is DNR, we should do our best to resuscitate them if their family is there and insists, despite the patient's wishes. That if the patient does not die, the patient is less likely to sue you for going against their wishes than the family is to sue you for not trying.

I have a real problem with this. Has anyone else been taught to do this?

[Trauma-tizedRN]

This thread reminded me of something one of my instructors recently told our class.

She told us that even if someone is DNR, we should do our best to resuscitate them if their family is there and insists, despite the patient's wishes. That if the patient does not die, the patient is less likely to sue you for going against their wishes than the family is to sue you for not trying.

I have a real problem with this. Has anyone else been taught to do this?

Haven't been taught this...it's just the way it seems to work...

[nursemary9, BSN, RN]

Hi,

I really think the only way we can get a handle on this is by EDUCATION!!

We need to educate the public. I don't care how old people are, I don't care how young they are, if they are of legal age, people need to be educated on there CHOICES!

They need thorough teaching on Advanced Directives. they need to be talking about this in an informed way.

I have started to do this with EVERYONE in my family. I am tired of hearing--"Oh we don't talk about that"!! Well, you need to!!! You need to tell as many people as possible what you're wishes are. It's never too soon.

People need to start taking some responsibility for what happens to them.

I now know what every member of my immediate family wishes, as do the rest of the family, because we TALK about these things.

The people in my family have been getting everything in writing, and keeping copies with them. Also, people in my family are giving copies of AD to people they have made Powers of Attorney for Health Care, so in case something happens, I or someone, will have legal proof that I am power of Attorney!

We,as nurses are in a unique position to educate--our patients, there families, and our own families. We need to be out there talking about quality of life, quantity of life.

We also need to let go & be supportive of people who want everything done. They have that right.

I just think that so often people keep there families alive out of guilt!! It's so sad.

I have worked oncology for 30 yrs. i've seen it all; prolonging life until I can barely stand it & feel guilty doing these things to pat's. and letting people go peacefully. I'll take the later any day!!

[gwenith, BSN, RN]

No we need to educate the public and in particular the relatives so that ICU is not seen as the drama queen's dream - think on all the soap operas. Days of our Lives and Muma Mia has just been admitted to ICU - there she is still in immaculate make-up and hair styling lying oh so tragically on the bed while the family gather round and express regret for every harsh word they have ever said.

Sadly for many people this view of ICU is the only one they have encountered so "life at any cost" becomes an easy ideology. It is too easy to deny that the person you love is going through hell when they do not see it. I am not sure about America but here we usually make sure the patient looks their best before letting the family in. We try not to do things to the patient that will upset the family while they are there. Perhaps this is wrong. Somehow we must break through the stereotypes implanted by the media to bring truth and acceptance.

[reprise]

One thing which was quite common 10 years ago was selective adherence to advance directives - so while only palliative care would be given for the underlying, terminal condition, doctors would actively treat any opportunistic infections or other complications likely to cause death as they arose (and they would present such treatment as being to make people more comfortable while either not mentioning or minimising the fact that it was also life-prolonging). I'm not sure how common such a practise is now. My partner had an advance directive in place and I held a medical power of attorney, but the doctors still tended to ignore both when they wanted to.

A neighbour of ours was on a ventilator last week and the doctors seemed to be working hard to try to convince the family to spare him the ordeal of a tracheotomy (he has emphysema and a host of other respiratory problems and has been "pulling through" for a year at the cost of appalling reductions in his quality of life each time). On that very issue, I made the rather difficult decision to allow my 13 year old to visit him in ICU last week and I don't regret that decision. I was concerned that she would find the experience distressing, but in fact it gave her a much greater understanding of just how sick he is (he's also experiencing multiple organ failure and had passed less than an ounce of urine in the previous 24 hours, so he was blown up like a balloon) and how interventions tend to cascade. We spent a couple of hours after the visit discussing why he was sedated and why his not weeing was such an issue and the fact that decisions made about his treatment do not affect whether or not this man will soon die but to a large extent they do determine how.

[mattsmom81]

Gwenith you are so right...natural death sems unacceptable here now...and equated to giving up or being weak, giving up the fight by some. They don't see the lost dignity. Also seems like in our hospital system, if someone dies it must be somebody's fault...and there's always a lawyer around every corner to grab a grieving family member and run with it. This is behind a lot of our futile care IMO.

One of my best friends is a nurse trained in Britain and she says it was not that way there. I don't know how things compare there now, but she was amazed to come to the US and see what goes on.

My mother was dx with inoperable cancer w mets to the liver...one massive dose of chemo ruptured something internally; and she went into a coma. My family looked to me for a decision what to do. It was easy for me...what are we saving her for I told them. if we intubate her and take her to surgery, we wil likely only prolong her misery, she may never wake up to anything and if she does it will be a life of pain and wasting away. Let her go. One of my sisters still accuses me of 'giving up' on Mama.

The public DOES live in this soap opera drama where doctors are Gods and can save everybody...(they watch ER and General Hospital right) so its hard to counter these fairy tales. Education and honest conversations will turn this around but its frequently up to nurses...as doctors can be the worst offenders. I've heard doctors tell families "I could have saved her but she gave up on me'. The God complex at its worst.