Debate- End of Life

[ShayRN]

Please, please play nice. I don't want this shut down. Seems we have many different opinions on end of life care vrs. treatment. Now, I want to say in my own family we had a miracle. My cousin was 19 when driving on wet and icy roads. She lost control of her car and suffered TBI. She is no longer able to attend college, but she does have a pretty decent quality of life. She walks and talks and is able to babysit a beautiful little girl. So, I GET there are miracles that happen every day in healthcare.

That being said, I firmly believe that when a person gets to a point where they have no hope of recovery it is time to "let nature take its course." I have said many times that I am not afraid to die. I am truely not. I am afraid of living in a bed in a soiled diaper, not holding my children, not being a wife, just existing from day to day. I am talking about those people we have all taken care of as nurses, the Alzheimer's patient with a peg tube, the ALS patient that is aware of their surroundings but cannot do a thing for themselves (this is my idea of hell on earth.)

Do you think that if we were more open with our children about dying that it wouldn't be something feared? What is your preception of dying? Are you more afraid to die or more afraid of living the lives like I described above? Do you think that if people were told the truth about their illness or that of their loved ones up front that they would make different decisions? For example, how often do you think a doctor speaks to a family about peg tube placement and says "you don't want to starve your mom to death do you?" vrs. "We can put a tube into your mom's stomach to give your mom the calories she needs to live but it may aspirate into her lungs and cause pneumonia. Or, she may not be able to tolerate it and it may come back out undigested and cause her butt to break down from the constant diarrhea?"

Do you think that different religious groups deal better with death than others? Do you think that opinions on death and dying follow culture lines, geographic lines or party (political) lines. Do thoughts vary from one country to another? Or is it just personal experience that factors in. How many family members I have heard say, "I will NEVER go through dialysis after watching mom on it, or No way would I have chemo done after seeing what it did to Dad's body, he wasn't sick from the cancer just the chemo!" I am really curious about this as I was surprised by the replys I got on another thread when I said too much money was being spent on keeping people alive who should be let die. I would NEVER say money is more important than one human life, but there are not unlimited resources out there and if we can let 103 year old grandma go to save resources for 19 year old car accident then I think that grandma should be allowed to die. AND, I would bet grandma would agree.

One last thing, please don't talk to me about Holocaust prisoners just "existing" that is a separate situation and not appropriate for this debate. You know it as well as I do.:icon_roll

[twinmommy+2, ADN, BSN, MSN]

"I would NEVER say money is more important than one human life, but there are not unlimited resources out there and if we can let 103 year old grandma go to save resources for 19 year old car accident then I think that grandma should be allowed to die. AND, I would bet grandma would agree."

It is so totally individual. I have had family members of patients say that they want everything done for their terminally ill patient who you are both looking at. They see their father who held them as children and was and is the world to them, we see an emaciated cancer ridden patient who would seem to like a good morphine nap. But that father hasn't seen the child that is on the way in about 3 months.

You look at them and say "why suffer like that?". The person is suffering obviously to us. Perhaps they want the patient to say goodbye to a family member, or believe that God will cure all, or have had so many bad experiences with the health care system they don't believe us when we say the patient is dying. Some of those hurtles can be overcome with lots of education or just letting the grieving process take its course until the family realizes that death is really happening. But never would I tell a family to let grandma go to save another, because she is just as deserving of all our resources and care if that is what she wanted.

[guislander]

Personally as a nurse I struggle with this. I work a tele unit and have plenty of pts who are full codes, but are ESRD/CHF/spetic. Also we have a policy that the state DNR form is not enough for a pt to be a DNR at our facility. The admitting Dr. has to write a seperate DNR order. Conscequently, we occasionally have pt who are DNRs, but for one reason or another the dr doesn't write the order and the pt ends up coding. I find it heartbreaking doing CPR on someone who should be a DNR and aren't. But One the other hand I struggle with standing by and doing nothing for a dying pt.I guess I have issues due to a personal experience with family member who was born with a condition not compatiable with life. She was made a DNR, but when she died the Nursing home she was in said they did all they could. I just hope they didn't mean the coded her. I think i believe there is a place for CPR and heroic measures, but personally I wouldn't want to be a full code if there was no quality of life. For me I would choose quality over quanity every time.

[twinmommy+2, ADN, BSN, MSN]

Personally as a nurse I struggle with this. I work a tele unit and have plenty of pts who are full codes, but are ESRD/CHF/spetic. Also we have a policy that the state DNR form is not enough for a pt to be a DNR at our facility. The admitting Dr. has to write a seperate DNR order. Conscequently, we occasionally have pt who are DNRs, but for one reason or another the dr doesn't write the order and the pt ends up coding. I find it heartbreaking doing CPR on someone who should be a DNR and aren't. But One the other hand I struggle with standing by and doing nothing for a dying pt.I guess I have issues due to a personal experience with family member who was born with a condition not compatiable with life. She was made a DNR, but when she died the Nursing home she was in said they did all they could. I just hope they didn't mean the coded her. I think i believe there is a place for CPR and heroic measures, but personally I wouldn't want to be a full code if there was no quality of life. For me I would choose quality over quanity every time.

Perhaps they did all they could to make her death as comfortable as possible? I would hope that was what they were talking about.

[Ruthiegal]

I believe that dying with dignity and respect is much better than letting someone live in a body that no longer works, with a brain that no longer recognizes loved ones. If it is their time let them go.

It isn't about how long we live but with what quality we live. I have worked in LTC and have seen the saddest cases of family members just keeping Mom alive for their own selfish reasons. I have taken care of an anoxic brain injured woman whom I knew, and never could understand...the family wanted a miracle, but the brain function tests told another story. She lived for 30 years unaware, being taken care of not even able to express herself in anyway unless she had deep pain and only then tears would come from her glazed eyes.

I do understand the families wanting miracles and hoping for improvement, but I can't understand leaving a loved one in that situation when clearly there is no hope of any kind of recovery. If there is no hope of getting better, or ever having any quality of life it's time to go.

I also believe that each case is different, and unique, and allowances can be made, but if it is time for me to go, keep me comfortable, call my family, and let me go in peace. I do not want to live with a mind that is gone, or a body that just won't work anymore...

[Tweety, BSN, RN]

Young people with TBI's are interesting. I've found the younger they are and if they exhibit something to show they are "in there", then sometimes they do come around. We're currently taking care of a 19 year old TBI that 4 weeks ago was completely unresponsive, trached, and tube feed. Now he's awake, obeys simple commands....seems to be paralyzed on one side, but he's coming around, still trached, still tube feed, still severely brain injured and has a long long road ahead of him. Who knows where he'll be in a year.

On the other hand, I'm completely totally against futile care when there is no hope of recovery, and there is a time when everyone should come together and allow a person to finish the process of dying that their injury or disease started.

I don't have kids, but I think there's a time to let kids be kids and not drag them into end of life issues. But as their relatives pass away...most kids will loose a grand or great-grand parent, then it's time to explain the facts of life, without fear. My parents totally sheltered me from death to the point they didn't let us go to grandma's funeral. I think they were wrong for that. I think there's a balance between keeping their innocence and realistically telling them that we all die, and bring them into the process when appropriate.

Religions....hmmmmmmm........with the fear of going the Hell looming, it's no wonder some people fear death. But I'm not sure one is worse than the other.

Like many of us, it's not death I fear, but the process. The thought of being frail, incontinent in pain, and dependent doesn't make me feel good. I hope that doesn't happen, but there's no guarantees.

[anonymurse]

I'm big on self-determination. I love it when a pt knows exactly what they want and sets things up to make sure they get it.

[llg, PhD, RN]

I am not in favor of legal mandates when it comes to these issues -- such as age limits, etc. I believe that each case needs to be considered separately and the individual and family should be given as much freedom to choose as possible.

However ... that said ... I think we have done a bad job as a society by not adequately educating people and promoting a culture that allows death to happen peacefully and with dignity when it is apparent that the end is near. I believe we should actively promote the development of hospice services and other services that can help decrease the incidence of the types of ICU travesties we are talking about by helping individuals and families to make better decisions about death issues.

Few people say they want that type of high tech, invasive treatment when it is only prolonging life by a few days or weeks. And yet ... so many people have that type of death because family members can't bring themselves to let death occur. The only way to prevent that sort of thing is to change the culture so that families are better prepared to make those decisions when the time comes.

Perhaps LTC's etc. can mandate that every "next of kin" of their residents attends a class or receives material that will help them prepare for those decisions that will eventually need to be made.

[chrisciwi]

I would rather die than be in some type of sitiuation where I can't do anything for myself. I hae told everyone I know (so that there are no confusion on my wishes) to pull the plug if chances are less that 50/50 and after 1 year, pull it.

Death doesn't scare me as much as being old. I'm not saying death doesn't scare me, but it scares me far less than being old, and not being able to do the things I want to.

[Ruby Vee, BSN]

it is so totally individual. i have had family members of patients say that they want everything done for their terminally ill patient who you are both looking at. they see their father who held them as children and was and is the world to them, we see an emaciated cancer ridden patient who would seem to like a good morphine nap. but that father hasn't seen the child that is on the way in about 3 months.

you look at them and say "why suffer like that?". the person is suffering obviously to us. perhaps they want the patient to say goodbye to a family member, or believe that god will cure all, or have had so many bad experiences with the health care system they don't believe us when we say the patient is dying. some of those hurtles can be overcome with lots of education or just letting the grieving process take its course until the family realizes that death is really happening. but never would i tell a family to let grandma go to save another, because she is just as deserving of all our resources and care if that is what she wanted.

many of the family members who say they want "everything done" have no concept of what that means. if we as health care practitioners (and by this, i mean the providers who have the responsibility) explained to family members exactly what that means and further explained that they have the choice to not do this to their loved ones, i'm sure there would be far fewer families choosing the "do everything" route. i have no problem keeping grandma alive, if possible, for another 24 hours because her favorite grandchild is on the way home from iraq for one last visit, but i have a huge problem keeping her alive until her social security check arrives because someone wants to cash it and use the money for their own purposes. and i've been asked to do both.

as far as letting grandma go to save another -- some lives are worth more than others. grandma who is 85 and is multisystem organ failure isn't going to recover and have a life worth living. perhaps we ought to be spending our finite resources instead on the 19 year old car accident victim, or the young mother of 3 who needs dialysis to keep her alive until her twin sister can muster out of the military and donate her kidney or the 57 year old paramedic who was shot trying to treat a patient in a bad neighborhood . . .

the thing that so many people don't seem to understand is that our resources are finite. we cannot do everything for everyone, even though we've been trying to do so for a very long time. at some point, we're going to have to start drawing lines -- and grandma may be a very good place to start. and while i'm on the soap box, we might also draw the line at multiple second chances for patients who have proven to be noncompliant. if the ventricular assist device patient refuses to change her dressings and gets infected, if the dialysis patient refuses to show up for her dialysis appointments and snacks on pizza and beer to the point of needed emergency dialysis every month, if the transplant candidate comes into the er drunk more than once -- draw the line there. if someone needs dialysis or a liver transplant because of a suicide attempt, let them die. are resources are finite. save them for someone who wants to live. i'm fully expecting to be flamed for this . . .

[PostOpPrincess, BSN, RN]

I have found that people with deep faith have the most peaceful deaths.

[ktwlpn, LPN]

I also am more afraid of a living death then I am of actually dying. Thanks to my advance directive and the numerous conversations I've had with my husband and other close family and friends I know I will die comfortably and I don't fear it. I do have a fear of drowing in a car (thanks,Ted Kennedy) so I always open my window when I am crossing over water.Have to be prepared,you know.

Death and dying has been something that my 19 yr old son has had intimate experince with and I did not shield him from it (as it was from me when I was little) He has a good understanding of the process and supports our advance directives and has told us his wishes.

I certainly agree that physicians gloss over and avoid the subject of quality vs. quantity of life.I hate the "you don't want to starve g-mom?" line and locally it seems to be prevalent. I hate it when we get an admit like that in LTC and the family says "When can she start eating?" I especially HATE it when the resident is alert enough to cry for food/water but is NPO with a peg in spite of the advance directive that stated "no artificial feeding"-what were they thinking?" I think the families need to sit at the bedside for at least 3 entire days and really SEE what is going on.

Our culture is the worst when it comes to death(and ,birth,sex-you name it)...We pretty it up and pretend it isn't happening because the system allows it.If extended familes still lived together and people cared for their loved ones in their later years maybe it would be different (it is with the Amish and they still live that way) It's sad but we can place our loved one in extended care and never see them again until it's all over-and not pay a cent,either.

Expense SHOULD be considered.Health care resources ARE finite.I think care should be based on some type of acturial table..We always say at the LTC that if the families had to pay for the peg and feedings we would not have as many...

It's my mission to actually use the WORDS when I deal with these issues in LTC I have to be careful because more then once I have seen co-workers called onto the carpet after a family member called a doc crying because "the nurse says momma is dying" and the doc did not want to be bothered. I think recently we have down an excellent job on our unit of helping several families get through the process and I give all of the credit to our hospice-thankfully after years of "winging it" we now contract with a local company and they are awesome. We have had really peaceful and comfortable deaths -nothing worse then watching a resident suffer.