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
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.
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.
ilg and ktw, appreciate both your posts very much.
and i agree that our society does everything humanly possible to not only avoid death, but to actually reverse the aging process.
youth and beauty are to be revered, whereas old age (and so, looking 'old') is devalued and feared.
(my goodness, one could write a book on american values...or sometimes, lack thereof.)
so while we can intellectually express our desires to die peacefully and w/o invasive machinery, the reality is that many remain petrified and will fight the inevitable, by agreeing to tube fdgs and even being vented.
most doctors are incredibly unhelpful in eol situations.
they have been trained to save all lives, at all costs.
it indeed, is about quantity of life over quality of life.
and it's a crying shame that folks die, fighting to the very end...
even those of deep religious faith, will often panic and start questioning and resisting.
it's a very human reaction.
we as a society, have far to go, in embracing this very natural transition.
heck, i could tell you that i don't fear death (and i truly do not).
but i also realize that when my time comes, i too may be clinging onto life as i know it.
the fear is mostly r/t the unknown.
but imagine how helpful it would be, if we did live in a culture where death is treated as elemental as birth/life is...
we would leave here with perhaps some reluctance, but it wouldn't be the primal fear that most encounter.
i would love to see dedicated, eol courses for all med students.
while care should be focused on preserving life, it shouldn't always be at all costs.
rather, they need to learn that death as an outcome, is sometimes the ideal...
and how can we best care for these folks during this time?
we need to learn and embrace, that death is not a failing.
should we ever come to accept our fate, we will do so with relative peace and surrender.
but as a society, we need to learn how to get there first.
Specializes in LTC,Hospice/palliative care,acute care.
Speaking of "looking old" I cared for a 102 yr old gal that had episodes of increased confusionand agitation and would look for her mother. One day she looked down at her hands in her lap and said " Oh ****-are those old things MY HANDS ? I guess my mother must be dead"
Having worked in hospice I will say no one wants to live more than the dying. I have also seen many who are not dying who want to die. If pain and symptoms can be controlled there is no reason to hasten death. Death is irreversable. We can find meaning in life even if we have little life left in us. Each life and death is personal, and no one has the right to make that judgement for another. I have also worked in a facility for profoundly disabled and mentally retarded persons. It is hard to imagine that they have any quality of life, but it is their life. It is all they have and all they can know. All we can do is try to give our patients the best quality of life possible by caring for them with kindness, compassion, and understanding empathy. I try to believe in life after death. I try, but sometimes I am just not sure. If this is all there is then no one has the right to push us out prematurely. I don't think that people make choices because of what they do not know. It takes time to accept death. Sometimes more time than people have. If they cling to life or want everything done for themselves or a loved one I support that. If they want to let go I support that too.
Speaking of "looking old" I cared for a 102 yr old gal that had episodes of increased confusionand agitation and would look for her mother. One day she looked down at her hands in her lap and said " Oh ****-are those old things MY HANDS ? I guess my mother must be dead"
Truthfully, the thought that I'd be totally demented, not knowing what's going on, doesn't bother me as much as the thought of what it would do to my kids. You can go ahead and pull out all the stops now, but when it gets to the point that I don't recognize my kids and can't discuss a good novel with my husband, let me go.
I had an interesting situation the other night...cancer patient with brain mets, only has a few months left to live at most, starting to experience more and more pain issues as his bone mets spread as well. His ex-wife came and stayed with him for several days, and took excellent care of him, able to coax him to do far more than the staff was able to. She came out crying one night, and told me that it was very upsetting b/c she and his sisters just wanted to do what they could to make him comfortable and not fight the inevitable, but he had stated on several occasions "I don't care what's wrong with me, you do everything to keep me alive for as long as possible." So here they were, totally comfortable with the idea of hospice, but keeping him a full code b/c that was what he wanted before the brain mets started affecting his cognition, but after he was diagnosed with only a year left to live.
My husband is one of those people who has stated, even after all of my horror stories, "I don't care how bad it is, I don't care how much I hurt, I don't care how futile it is, you keep me alive for every second that you can, even if I don't have any idea what's going on." I told him tough, I'll let him die when I think the time's right if it comes to that. (In turn, I have come to accept the fact that I'm certain he'll keep me alive much longer than I would have wanted him to. It's an odd compromise, I know.)
I think that our culture just breeds procrastination and misunderstanding about end of life issues. Perfect example...I had an oncology patient who was told six months to one year to live. His sister was going to take care of him after discharge, and was working on getting POA. I suggested to her that we have palliative care and hospice come to talk with the two of them during the present admit. She said "Well, we've got months before we have to deal with that." I told her as gently as I could that NOW, before it gets to that point, is the time to start getting everything lined up, and that it was inevitable that he would eventually need those services. She just could not understand why in the world it would be advantageous to start getting things set up ahead of time and becoming familiar with the services offered.
I like the idea of changing DNR to "allow natural death" instead. It's a matter of semantics for the most part, but I think that more lay people would be more receptive to the idea if it was couched in those terms instead. There is so much misunderstanding as well of what "do everything" means, and so little understanding of what coding a patient entails. I've always thought that we should have a brochure available that describes exactly what gets done..."We'll do chest compressions that, most likely, will lead to broken ribs. It is necessary to do compressions this hard to manually pump the heart. If appropriate, we will use electricity to try and shock your heart into a non-fatal rhythm. We will place a tube down your throat and put you on a mechanical ventilator, or "breathing machine." Even with immediate response by trained medical professionals, your chances of living until discharge are less than 20%."
Our culture is just too politically correct, as well. It's not okay, as my NM recently pointed out to me, to tell people that refusing necessary emergent treatment may lead to death...rather, it may lead to "a less than optimal outcome". Even when we're talking about refusing everything, from meds to a cardiac cath, in a patient with ongoing chest pain, history of multiple MI's, and positive (and continuing to rise) troponins. It may upset the patient, you see, and make them feel compelled to get treatment that they'd rather not receive. Therefore, we have to walk on eggshells and tiptoe around issues, instead of just addressing them point-blank and in a way that is less likely to lead to misunderstandings.
Sorry so long...just a lot to say on the subject, apparently.
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.
I agree completely. My mom just turned 70 this year, and about 10 yrs or so ago, we had the "talk" when she found out she was going to have some bladder surgery. She told me exactly what she wanted and didn't want, and it is so much easier when you are able to talk about that when it's not in the heat of the moment, and the person has thought about their options. I know this isn't always the case. Some of the traumas and illnesses don't let us have that kind of time.
I am completely in agreeance with it being individual. The problem I have is education. Whether it is for someone at the end of their life or in regards to a child inquiring about death. Too many people skirt the issue and find it too sad to deal with. Death is a natural occurance of life.
I do not avoid the subject of death with my children nor do I act like it never will happen to them. I have told them that you never know when death will happen and it will happen to everyone and it is a part of life. My MIL made the mistake of telling my daughter that is would not happen to me any time soon. (I was not a happy camper)
I find many people are so into keeping loved ones alive they forget that death will occur at some point.
For myself I will let nature take it's course in my golden years. Since I am a mom of young children I will probably be more agressive if situation presents itself now.
I support everyone's choice and hope that if the individual is unable to make a decision that they at least were educated earlier in their life so others could carry out their wishes. And I hope that we all have the courage to do what our loved ones want.
Just a side note. I find it humorous when I read that letting someone die or withholding interventions so life is not prolonged is "playing God".
I agree with many of you that it is a deeply individual decision. What puzzles me, however, is many of the politicians (and people) of this country talk ad nauseum about the sanctity of life, about what a gift it is from God, yet when it comes time to return to said God (according to their playbook) we do everything we can to avoid it, prolong it, push it away, deny it, leaving people in positions where they no longer have their dignity, no longer can care at all for themselves, and no longer can even make choices for themselves. To me, that is totally disrespecting the sanctity of life...it is a cycle. You are born, and eventually you die. How you die should be up to you, the decision made with the best knowledge you have at that time (which is where we come in, since it seems Docs don't like to discuss these issues or don't even know how).
In my opinion, there is nothing more fitting to a long, productive, happy life than a death that is handled in a manner in which the patient wishes. By that I mean, if the patient understands the ramifications of "doing all that is medically possible" and still wants it, then go ahead. But, I mean the patient has to "really understand" it. At the same time, there is nothing more beautiful than a person realizing that the circle has come around in full, and it is time to "let nature take its course" and spend time enjoying their loved ones, grand children, greatgrandchildren, etc., before the inevitable happens, rather than spending that time trying to prolong the inevitable with expensive, painful, and often futile treatments.
I think it is kind of like finance. Something we need to start discussing with our kids from a relatively young age (teen to young adult-ish). For example, I've told my family that right now, as a mom of young kids, if there is a chance I'll survive whatever hypothetical thing happens, then go all the way. But when I'm old, I want to go peacefully, with a bladder infection (or pneumonia, whatever) when I'm 90 that makes me confused and septic, and takes me in a couple of days. When I told this to my husband, he was horrified that I would even bring up such a topic. But, then it started a dialogue, and my kids know my wishes, even though the oldest is only 10, and he also knows my husband's (which is a huge step).
I tried to talk to my parents, but no such luck. They have the mentality (I think it comes from the religious background) that by not trying everything available, you might as well be comitting suicide (something I don't agree with and don't understand). So, we didn't get very far. But, at least they know my wishes (which horrified them as well). But, we have to start somewhere. I'd like to see in 8th or 9th-grade Health classes, or Driver's Ed classes some sort of information included on DNR, Living will, etc., and what it all means. The younger we can get some health literacy, the better.
Or, we could just start rotating field trips of high school students through LTAC facilities, and explaining to them what diseases make you live that way, or about some of the interventions like PEG tubes that they might have seen. It would be educational, and it would at least plant a seed. That's at least a step, right? This would, of course, have to be done in conjunction with DNRs, etc., and done very, very carefully so as not to seem biased against one versus the other.
Great topic....something I think about a lot, and recently read a great book about by a physician, of all people...unfortunately I can't quite remember the title, but I think it was called "Dying Well" or something like that. It's fairly new, published last year. Talked about resources as well, and how best to allocate them in these situations.
We have facilities attached to our hospital which range from an assisted living to a SNF. Several of the residents are nuns, and every single one of them has a POA under the head of their order and are DNRs in the case of cardiac or respiratory arrest. The DNRs are actually beautifully written, and say something along the lines of "In recognition of the life God has given me, and my submission to His will, should he choose to call me home through cardiac or respiratory arrest, or through a process deemed irreversible by my medical doctors, it is my wish that I be allowed to die in the dignity deserved by all of His fold. Death is but the final step on my journey of faith, and I face my final judgment without fear." I'm paraphrasing here, but I've read their advanced directives many times, so I'm confident that this fairly accurate. I've often wished that their openness in speaking about EOL decisions was reflected more in the Church teachings.
I work in an aged care facility with severely demented residents and in a paediatric hospice.
I took two months off from the nursing home recently to focus on uni. When I returned to work two of my residents had passed away. & some people look at you oddly when you say, "thank goodness it was Rosie. It was cruel for her to be alive. She was in so much pain." I thank goodness that her family gave her a natural course of death instead of trying to intervene at every fork in the road. She'd been a resident at the nursing home for 20 odd years, progressing through the levels of care until she was a bed ridden, doubly incontinent, exceptionally demented woman who cried so often that she had no tears left to cry. She was in pain. Pulling out all stops for Rosie would be, to me, cruel. She'd been suffering for twenty years. She didn't know her daughter, she couldn't walk or talk or read... She lay in bed, all day, everyday, for months on end, in pain. I was glad it was Rosie.
People ask me how on earth I can work in pedi hospice. & I look at them like they're mad. I love my job so much it's exceptionally difficult to describe. The facility is specifically for kids with terminal illness (i.e. who will die before adulthood.) The kids spend a lot of time at the Cottage from time of diagnosis for respite over the years and are welcome there for end-of-life, too. They and their families become part of the "Cottage family". We had one little girl, Summer, who, for some reason, was intubated and hospitalized despite her mum knowing that she was terminal. Summer spent two days in hospital before her mum requested the transfer to the Cottage. Summer was extubated and the nurses helped her mother carry her downstairs to the garden where she nursed her underneath a beautiful tree. She died half an hour later. It was really rather beautiful. (& some people ask you how death can be beautiful?)
At the moment we have a sixteen year old boy with exceptionally severe muscular dystrophy. He has a BMI of 10ish and needs position changes every 5-20 minutes because of the pain he is in. It's sad, he's sixteen - he should have his whole life in front of him. Instead, he's got the next few days. So we make those few days as beautiful and loving and fulfilling as he can. When I was on shift yesterday I sat with him and chattered away about the world (he doesn't talk much due to the pain), made up his favourite cordial for him, put on a movie and watched it with him, teased him and fostered a smile here and there. I'd hate to think that he died without smiling again.
Specializes in med-surg 5 years geriatrics 12 years.
I agree that we need to talk about death and dying more than we do. I have seen enough suffering to realize that death is not always a bad thing. We need to explain things i.e. codes to patients and families better. And at some point we need to discuss quality vs quantity of life. as others have stated, resources are not infinite.
I am currently case managing a 55 year old with ESRD. She is morbidly obese to the point of being immobile. She is non compliant with Diabetic care and diet. Her only muscles that work are those which allow her to shovel food, and she does that well. She is transported to dialysis 3 days a week via ambulance (94 miles round trip). She needs a quad bypass but, as you can imagine, is not a candidate for anesthesia, and she has been turned down by UNIS for a donor kidney. These two issues are her current focus. She spends a lot of her day on the telephone calling congressmen and consumer groups complaining that Medicaid will not pay for her care. She has accused me of helping kill her because I will not talk her doctors into operating. Her family wants little to do with her, and I cannot keep a care attendent or home health nurse with her, they usually quit after a few days. I cringe when I see how much we are spending to keep this person alive. I asked her once who she could blame for being a 400+ pound uncontrolled Diabetic with no kidney function and end-stage cardiac disease. Her doctor...... When I think of the good this money could do...... And she is not my only patient in this state.
leslie :-D
11,191 Posts
ilg and ktw, appreciate both your posts very much.
and i agree that our society does everything humanly possible to not only avoid death, but to actually reverse the aging process.
youth and beauty are to be revered, whereas old age (and so, looking 'old') is devalued and feared.
(my goodness, one could write a book on american values...or sometimes, lack thereof.)
so while we can intellectually express our desires to die peacefully and w/o invasive machinery, the reality is that many remain petrified and will fight the inevitable, by agreeing to tube fdgs and even being vented.
most doctors are incredibly unhelpful in eol situations.
they have been trained to save all lives, at all costs.
it indeed, is about quantity of life over quality of life.
and it's a crying shame that folks die, fighting to the very end...
even those of deep religious faith, will often panic and start questioning and resisting.
it's a very human reaction.
we as a society, have far to go, in embracing this very natural transition.
heck, i could tell you that i don't fear death (and i truly do not).
but i also realize that when my time comes, i too may be clinging onto life as i know it.
the fear is mostly r/t the unknown.
but imagine how helpful it would be, if we did live in a culture where death is treated as elemental as birth/life is...
we would leave here with perhaps some reluctance, but it wouldn't be the primal fear that most encounter.
i would love to see dedicated, eol courses for all med students.
while care should be focused on preserving life, it shouldn't always be at all costs.
rather, they need to learn that death as an outcome, is sometimes the ideal...
and how can we best care for these folks during this time?
we need to learn and embrace, that death is not a failing.
should we ever come to accept our fate, we will do so with relative peace and surrender.
but as a society, we need to learn how to get there first.
leslie