End of life issues....an ICU nurse looks at intensive care......trigger warning

[Ottakee]

Triggers warnings......end of life stuff

 

 

http://nypost.com/2012/12/09/diary-of-an-intensive-care-nurse/

 

A friend and I were just discussing these issues this morning.  We just faced this yesterday with my husband's uncle who passed away after we had his vent removed.

 

What are you thoughts on end of life issues?  Doing everything possible?  Care and comfort?  Somewhere in between?  Modern medicine can be wonderful but at times are we doing more harm than good?

 

My hats off to ER and ICU doctors, NPs, PAs, nurses, techs, etc.  they have a very very difficult job to do.

[Farrar]

I've seen this go down a number of different ways. Put me on hospice early and let me enjoy my last days with the best palliative care I can get.

[poppy]

Background: my father died last year. He had cancer. He was in ICU for a few days, then hospice (just another room in the same hospital).  They removed his breathing apparatus, and he died about 12 hours later.

 

I don't think this article is fair or helpful.

 

Like this quote: "Patients obviously can’t eat, so they will have had a feeding tube pushed up their nose or through their mouth and their esophagus, down into their stomach. This often takes a few tries, requiring us to pull up the bloody tube, re-lube it and push it back in at a different angle."   And then the bit about diarrhea that develops.    So...... is the argument that feeding tubes should not be allowed near end of life, I guess? But how do you know it's end of life?

 

When my dad went into the ICU it was one of a dozen trips.  We had some really good times between those trips. I read this article and it sounds like a litany of indignities-- yes-- but also just hopeless and grim. 
I guess its' to show the diary of an upset nurse. I don't envy those people their jobs, at all.  But I definitely don't feel like I learned anything or am better off having read this.

Edited March 4, 2017 by poppy

[Lady Florida.]

Following up on the article, I highly recommend this book. Whether you have aging parents or need to think about your own end of life issues, it will help you consider how to make choices.

 

Being Mortal: Medicine and What Matters in the End

[Monica_in_Switzerland]

Stuff like this scares the heck out of me.  I want to wake up dead one morning in my bed.  :-/  

 

I'm an advocate for doing what the patient wants, and erring on the side of comfort over prolongation of life with low/no chance of recovery.  I like the phrasing "meaningful recovery" that was used in the article.  

 

I believe suicide, including assisted suicide, is morally wrong.  But letting people die... that's just life.  

[gardenmom5]

btdt with my mom.

 

My mother was severely brain damaged from anoxia, absolutely no hope of recovery.  the dr . . . bless his heart . . . . :glare:  . . . kept trying to keep up hope.  :toetap05:  to a degree, medical personnel are trained to save lives no matter what.  but, it wasn't a kindness.  my mother was never going to recover.  the chances that she'd even recover to a degree to survive off life-support was slim and none. - i found one in the record. (still would have been profound brain damage). - but my sister jumped at everything he said.  she wanted the miracle recovery.  she was in total denial of reality.   i'm rather ticked at the doc as it was a real disservice to her, and probably increased her grief.   we made the choice to remove life-support.  I repeatedly told her, my brother even went to her house to pick her up to bring her to the hospital so she could be there when we removed her from life-support.  she flat out refused.  I was shocked to find out that becasue we didn't call her when she died (<5 minutes after turning off support), she thought she was breathing on her own.  :ohmy:   why in hades did she think we were giving her an opportunity to be there?????  there was no way she was going to survive.

not to mention the bills.

 

I also have a friend whose 2nd twin was born dead.  he was revived. severe brain damage -the things they have gone through in his life becasue of it . ..not to mention the $$$ they have spent on his medical needs . . . he's lived almost twice as long as is typical for the type of brain injury/disabilities he has. (he's in his late 30s)  she used to worry he would out live them, and she wished he would die becasue who would care for him when she was gone?  his health is now failing.   he has a very sweet spirit - but he has tremendous medical needs.

[Barb_]

Old people are pumped full of drugs to keep them alive. My grandad is 90 and is in end-stages dementia. He messes himself all the time and can't eat anything but baby food. My mom and dad are 70 and are caring for him full time. He's on cholesterol meds, blood pressure meds, prostate pills, etc. He's strong as an ox and not dying but his balance is shot and he falls all over the place. He busted his nose and spent time in ICU, then hospice, but they graduated him out of hospice once they realized he was going to recover. They can't legally pull his meds even though they're artificially prolonging his life. It's a morass.

Edited March 4, 2017 by Barb_

[EmseB]

Reading that article is like...yeah, dying sucks. It's hard and messy and difficult to see when we should intervene or not. It's not like if that nurse wasn't doing those things she described that the patients would just fall asleep peacefully and not wake up. They'd be dealing with starvation or suffocation or something else painful and messy.

 

My grandma went to the hospital with pneumonia when she was in her 80s. At one point during her illness they probably could have justified putting her on hospice and giving her morphine until she passed away. As it was, they treated her, she lived 10 more years and saw her great grandkids born into the world, and I know for a fact she was glad for that even though pneumonia recovery and treatment was horrible.

[Laura Corin]

Care and comfort.  

 

My mother wants to make decisions about end of life (she told me) but I haven't been able to get her to think it through.  I desperately want to have her wishes on paper (essentially, if an intervention will leave her living less independently or in more pain than currently, she wants to be allowed to die) but I'm having a hard time managing it.  She is lucid but has a hard time concentrating on things for long - essentially one task per week.  This week it was writing birthday cards to four relatives.

 

My father had three lines of treatment for cancer then chose hospice.  It was the death he wanted.

[Guest]

I cant agree that pulling meds or devices is ethical. For ex, many would be dead without insulin, before they reached old age. Not having eyeglasses would have done me in. And memory....my lifelong memory issues are malnutrition related...what if we continue the research and find we can prevent alzheimers or reverse it with good nutrition? The mury is still out on that.

Edited March 4, 2017 by Heigh Ho

[Guest]

..

Edited March 4, 2017 by Heigh Ho

[Laura Corin]

I cant agree that pulling meds or devices is ethical. For ex, many would be dead without insulin, before they reached old age. Not having eyeglasses would have done me in.

 

I don't think that anyone is talking about denying young people needed medical interventions.  But old people are often 'done'.  They have lived their lives and a relatively swift death is what they want.  I second the recommendation of Being Mortal by Atul Gawande.

[Ottakee]

I cant agree that pulling meds or devices is ethical. For ex, many would be dead without insulin, before they reached old age. Not having eyeglasses would have done me in.

 

What they are talking about is vastly different than insulin and glasses.

 

The article I link is talking about a person with a terminal illness having tons of medical interventions (ones that keep them restrained in a hospital bed, not able to function) that only prolong death by a few hours, days, or maybe weeks.

 

Treating pneumonia.....great.  Treating pneumonia by putting on a vent, feeding tube, retraining them in bed, bags for urine and feces, 8 IV drips, etc. when the patient already has end stage kidney failure, has needed CPR 3 times in the past 2 days, etc. is vastly different...that was where my FIL was.

[EmseB]

What they are talking about is vastly different than insulin and glasses.

 

The article I link is talking about a person with a terminal illness having tons of medical interventions (ones that keep them restrained in a hospital bed, not able to function) that only prolong death by a few hours, days, or maybe weeks.

 

Treating pneumonia.....great. Treating pneumonia by putting on a vent, feeding tube, retraining them in bed, bags for urine and feces, 8 IV drips, etc. when the patient already has end stage kidney failure, has needed CPR 3 times in the past 2 days, etc. is vastly different...that was where my FIL was.

The problem is that it is rarely as cut and dry as what you're talking about and it is often a slow enough progression that it's even muddier than that. When is the last time you attempt CPR? Do you even attempt it one time? Do you give someone a vent at all if they are over a certain age? Do you let them die of infection and bed sores because you don't want to cath or bag them?? It easy to say at the end that too much was done when you look at it all together. It is often very, very, very hard to see the tipping point when you're in the midst of it, and even after the fact you can't necessarily conclude they would have been less miserable without interventions...perhaps only a different kind of miserable.

 

ETA: I'm just saying that I don't second guess people's decisions in these cases even though it can look as you describe in the end. Death sucks all around and decisions are hard.

Edited March 4, 2017 by EmseB

[matrips]

I don't think one answer fits all. My dad died at almost 88. In the 8-10 years before then, he was mostly a healthy old guy who liked to walk, grocery shop and play with his grandkids. He did end up in the ICU a few times during that time- blood clot, cdiff (doctors still prescribe antibiotics without probiotics and it literally almost kills these older people). However, once better and out, he resumed his activities. He didn't want to die and wasn't ready. Now his last 6 months were different. He still didn't want to die, but his body didn't agree. When he finally realized he was not going to get better this time, he agreed to hospice. I would not have wanted someone to say during those previous 8-10 years- "oh he's old, he's not worth trying to heal." And he certainly didn't want it either.

[Guest]

What they are talking about is vastly different than insulin and glasses.

 

 

We will have to.agree to.disagree. the issue to me is when to call it quits. It is clearly not when meds or devices are needed. it is not a certain age, younger than 120. It is not during a tough medical procedure or recovery. It does seem to be when the body can't recover.

 

I had a 97 year old friend, who decided he wanted to meet death on his own terms. His choice was put the pig valve in, or wait for the original part to wear out at some random time away from the hospital. He survived the surgery, but not the recovery. Yes, his surgery was expensive and he was able to give the taxpayer the bills. what if he had the surgery earlier? He would have lived another fifteen years, unless something else wore out. I think I would like earlier intervention.

[regentrude]

I did not understand this passage:

 

he patient’s husband explained that he knew that his wife didn’t want to be there and that her underlying diagnosis plainly meant that her life was going to end, that they both understood this and didn’t want to painfully draw things out. Then he asked if he had any decisions to make — in effect being as blunt as he could without simply insisting that they withdraw care then and there.The doctor said no. She said that the patient needed to complete the course of antibiotics to see if the infection could be cured, after which they could approach the question of whether to continue with intensive medical care. I imagine the doctor saw some distinction between letting the patient die of her primary, terminal diagnosis and letting her die of a complication. So the husband’s efforts to stick up for his wife went unheard, and she stayed in the ICU, comatose, for about two more weeks — quite the opposite of her stated wish — before everyone agreed to let her go.

Why is it not the patient's or her next of kin's right to decide the treatment plan? How can the doctor say the patient needed to complete whatever course of treatment?

 

[Anne in CA]

I have a cousin who died at 52 about five years ago. She was warned that her breast cancer was so aggressive that it was unlikely to respond to treatment, so she didn't tell anyone she had it and lived like normal for the next few months. She spent four days in the hospital right before she died. That seems reasonable to me. She said goodbye to everyone who mattered and moved on. I wouldn't want to prolong my life a tiny bit with a lot of invasive treatment... My own parents are very healthy, and their parents were healthy so I probably won't have to make tough calls for them. My sister is a nurse and will know how to approach their medical care better than I ever would. My brother needed a new heart valve and was told that without her he would never have lived through the process because she made the best decisions for him at every point. 

 

I don't think I would want my life prolonged so that I could live in a nursing home, but maybe nursing homes are better now than the ones I used to visit my grandmother's friends in. But then, I am not really afraid of death. I am much more afraid of living in bad conditions.

[regentrude]

This is why an ongoing discussion about these issues in the family is so important - and why the patient's wish should absolutely supersede doctor's orders. Nobody should have to endure medical interventions against his will, but that also requires that a patient's will is known. This is a good reminder to talk about these things in the family, and to write down as much as possible, so that there can be no guessing what the patient would have wanted if she can no longer speak for herself.

(Of course one can only hope that the family will actually honor the patient's wishes and not put their interest above the interest of their dying loved one.)

 

I also believe it should be a person's right to choose the moment of her death and to receive medical help to end unavoidable pain and suffering. We give our pets this gift, but withhold it from our fellow humans - this seems cruel to me.

 

Edited March 4, 2017 by regentrude

[Katy]

I think this article is, at best, tainted by a recent death of a loved one of the writer.

 

The ICU doesn't exist to provide end of life care.  The ICU is there for critical patients because it is often true that if you can get someone through a critical period they can go on to not only survive, but to be the same person they were before.  Even with stroke patients.  Even in miraculous cases like Britney Spears's niece a few weeks back. My grandfather had his first stroke in the 1980's, took about  a year to fully recover, but did, went on to have several more strokes, and died of something completely unrelated 30 years later.

 

Having said that, I don't think there is anyone who's ever worked in nursing or medicine who hasn't seen some truly horrible things involving death.  But these cases typically involve family who refuse to let someone die, or that was preparing for the death of a different family member, not the person who is actually dying.  IE: if one parent has Alzheimer's and the other was the caregiver gets diagnosed with end stage cancer.  I've had children freak out and fight and needed to call security because a stepparent is allowing their parent to die the way they wanted instead of fighting for them to live, etc.

 

I've also had patients where the person had a clear and documented wish to not live in the state they would be in when they came out of it, but their spouse took them to a different hospital network where the living will was not on file and refused to provide it because they weren't ready to let go.

 

I believe there is purpose to living even with diminished capacity, but not everyone believes that.  If you want to die on your own terms, make sure you have a living will, file a copy with your attorney and your doctors and at every hospital you are likely to go to if your hospital network is the type to take such a thing.

 

In cases where a family refuses to let someone die, nurses do everything they legally can to let them die anyway (delaying rounds on this person to the maximum legally allowed so that you can hopefully find them passed instead of coding, etc).  Sooner or later they do, but it can be an extraordinarily emotionally difficult few weeks to see someone in pain who just wants to die and their children refusing to let them do so because they're not ready.

 

At the other extreme are hospice patients who, in the death process, forget they signed hospice papers and demand to go to the hospital.  That is scary and heartbreaking for family members who were accepting of the death process and are suddenly thrust into wondering if they are doing the wrong thing.  Usually in these cases the discomfort that a patient feels can be alleviated with a bit more pain medication and once the discomfort is treated they agree they don't want to go to the hospital after all.  Still, those moments of panic are scary for everyone.

 

It is important to have regular discussions with family about death.  Every adult who will be impacted should know who gets what in your will. Everyone who may have some legal imput should know what your wishes are regarding end of life care.  If you want to make sure you're not kept in an ICU when you shouldn't be, the moment you find out you have a condition you won't survive, sign up for hospice while you still have the capacity to do so.  Don't use the last of your capacity only to move yourself and your husband into a nursing home and refuse to deal with your own future.  Because upset children usually opt to prolong your suffering in order to delay their own.  Only if they are very, very clear that the loving decision is to let someone go is it easy for someone to make that choice.

[Farrar]

It broke my heart seeing my father dying in the ICU. And his wife convinced that he wasn't in pain (he totally was). And right down to the end, she could not face that he might be dying. And she was furious with me for "giving up on him" because I kept trying to get her to make decisions with that as a possibility. And then he died. And they had made no decisions about what he wanted at his funeral. We had not been strongly discouraged from coming down and see him while he was still well enough to enjoy our company. She was so unprepared. And as a result, they chose invasive, painful procedures to try and save him.

 

My step-father died with a lot more dignity. At home. After having had a very long time despite a difficult illness to make decisions, to plan what he wanted, to spend time with all of us and make final memories for us. And that's on my mother, for her long work dealing with death and dying issues. I credit hospice for having helped him live with more good days for longer than he would have otherwise.

 

ETA: I do feel compelled to add that it's hard to know sometimes what's the right call. My grandmother ended up spending several weeks in the ICU in her late 80's. I thought she was a goner. They used all the most invasive things... and she pulled through just fine. I'm still shocked two years later, you guys. And yeah, she's not 100% of where she was before. But she's still walking, still managing, still good.

Edited March 4, 2017 by Farrar

[Lady Florida.]

It's also important to have a living will. If MIL hadn't had one she would have spent who knows how long in the hospital, hooked up to machines that were simply keeping her alive. She wasn't conscious, obviously couldn't make decisions, and her quality of life at the end would have been zero. Her living will made it so FIL didn't have to make a difficult decision - she made that decision for him - kept the medical personnel from having to do more and more to simply keep her alive, and allowed her to go relatively peacefully. 

Edited March 4, 2017 by Lady Florida.

[regentrude]

OTOH, it can be very difficult to make the living will in enough detail to allow the spouse not to have to make any decisions, since it is not feasible to forsee all conditions and possibilities.

For this reason, I have chosen not to stipulate what extent of life saving measures I want, since I cannot predict the prognosis after the event that renders me unable to give my opinion - be it a car accident or a terminal disease. Being resuscitated after an accident in my 50s may restore me to full health; being resuscitated in cancer surgery at age 80 may just prolong suffering.

I have given power of attorney to my husband to make medical decisions for me. We also have ongoing conversations about the quality of life that we find acceptable, and so I trust that he will interpret my wishes in the context of the situation and decide in my best interest. I cannot be certain that this will lead to the "right" choice, but since we have no crystal ball, I feel that is the best I can do.

Edited March 4, 2017 by regentrude

[EMS83]

Triggers warnings......end of life stuff

 

 

http://nypost.com/2012/12/09/diary-of-an-intensive-care-nurse/

 

A friend and I were just discussing these issues this morning.  We just faced this yesterday with my husband's uncle who passed away after we had his vent removed.

 

What are you thoughts on end of life issues?  Doing everything possible?  Care and comfort?  Somewhere in between?  Modern medicine can be wonderful but at times are we doing more harm than good?

 

My hats off to ER and ICU doctors, NPs, PAs, nurses, techs, etc.  they have a very very difficult job to do.

 

I'm sorry for your family's loss.  :grouphug:

 

My grandmother was in ICU and then hospice.  I agree with the nurses: in some cases, it's better not to make it to the hospital.  But we did remove the tube Grandma didn't want (and every other line; apparently hospice is all or nothing).  She had DNR orders, and I learned that ambulance personnel are not allowed to follow those; they have to attempt to resuscitate.

 

She was weak but lucid, but then they just dosed her with morphine which knocked her out for the last few days.  So if there's not much of a survival rate, I'm fine with care and comfort, but can it be something other than a drug-induced coma?  That irked me.  Maybe she would have asked for that, but no one asked her if she'd like to go to sleep and not wake up again or if she'd like remain conscious but comfortable.  Also she didn't want the tube, but was fine with the IV that was giving fluids and such.  Why not leave that in?  The whole thing left me feeling robbed of a relationship I never had, and highly skeptical of the medical system (not people, just system).  

 

I feel the entire question and industry doesn't allow enough for the nuances of individual situations; it is literally a case by case practice, but the policies are often blanketed and generalized.  It doesn't fit.  I think there's a money game being played with hospitals, too, but have absolutely no actual evidence to point to--just baseless conjecture.  ;)

[Farrar]

OTOH, it can be very difficult to make the living will in enough detail to allow the spouse not to have to make any decisions, since it is not feasible to forsee all conditions and possibilities.

For this reason, I have chosen not to stipulate what extent of life saving measures I want, since I cannot predict the prognosis after the event that renders me unable to give my opinion - be it a car accident or a terminal disease. Being resuscitated after an accident in my 50s may restore me to full health; being resuscitated in cancer surgery at age 80 may just prolong suffering.

I have given power of attorney to my husband to make medical decisions for me. We also have ongoing conversations about the quality of life that we find acceptable, and so I trust that he will interpret my wishes in the context of the situation and decide in my best interest. I cannot be certain that this will lead to the "right" choice, but since we have no crystal ball, I feel that is the best I can do.

 

I totally agree with this. This is why I feel like it's important to have someone who really shares your outlook on a deeper level. It should probably be a middle aged couples "thing" to read Being Mortal together and have a deeper discussion about these issues and make sure that you understand where your partner stands. Most decisions won't be clear cut.

[Laura Corin]

 

I have given power of attorney to my husband to make medical decisions for me. We also have ongoing conversations about the quality of life that we find acceptable, and so I trust that he will interpret my wishes in the context of the situation and decide in my best interest. I cannot be certain that this will lead to the "right" choice, but since we have no crystal ball, I feel that is the best I can do.

 

I don't know the rules in the US, but the UK version (which Husband and I have, and my mother also has) requires the patient to have 'lost capacity' for it to be invoked.  That may take a bit of time, when the patient is already possibly in distress.  I want to have Mum's own wishes recorded (at this stage of her life) so that I can carry a copy on me.

[Katy]

I'm sorry for your family's loss.  :grouphug:

 

My grandmother was in ICU and then hospice.  I agree with the nurses: in some cases, it's better not to make it to the hospital.  But we did remove the tube Grandma didn't want (and every other line; apparently hospice is all or nothing).  She had DNR orders, and I learned that ambulance personnel are not allowed to follow those; they have to attempt to resuscitate.

 

She was weak but lucid, but then they just dosed her with morphine which knocked her out for the last few days.  So if there's not much of a survival rate, I'm fine with care and comfort, but can it be something other than a drug-induced coma?  That irked me.  Maybe she would have asked for that, but no one asked her if she'd like to go to sleep and not wake up again or if she'd like remain conscious but comfortable.  Also she didn't want the tube, but was fine with the IV that was giving fluids and such.  Why not leave that in?  The whole thing left me feeling robbed of a relationship I never had, and highly skeptical of the medical system (not people, just system).  

 

I feel the entire question and industry doesn't allow enough for the nuances of individual situations; it is literally a case by case practice, but the policies are often blanketed and generalized.  It doesn't fit.  I think there's a money game being played with hospitals, too, but have absolutely no actual evidence to point to--just baseless conjecture.   ;)

 

I'm sorry for your loss. You don't say what it is that your grandmother had, but for many diseases the death process even without medication involves days or even weeks of sleeping at the end.  If she was in pain, the morphine would have made the inclination to sleep even stronger.  The IV would have been life (and therefore pain) extending, which is why it was withdrawn.  All of this should have been spelled out in detail to your grandmother (and/or her caregiver) before the papers to accept hospice were signed. 

 

The morphine does decrease pain and increase sleeping, but it also slightly hastens death. Some patients prefer to have the least amount of pain possible and ask for larger doses even if it means they will not live long.  Others want only enough medicine to make the pain tolerable so they can have more time.

 

I wish learning about death and dying was standard curriculum.  This feels like something everyone should know.  Perhaps it used to be common, back when we kept grandparents in the home and children were exposed to death at young ages.

[Seasider]

I don't think that anyone is talking about denying young people needed medical interventions. But old people are often 'done'. They have lived their lives and a relatively swift death is what they want. I second the recommendation of Being Mortal by Atul Gawande.

I agree, though I don't believe we should pull all meds from the elderly if they have a chance to live a life with dignity and quality (though what constitutes that is perhaps debatable). But for those of advanced years (80s, 90s) who are nonresponsive or in deep dementia, who have no chance of recovering with the ability to authentically interact with others, a stream of life support seems futile.

 

I second the above book and advise everyone to have these conversations with their elderly loved ones. And to be proactive in communicating your own wishes to your children, either directly or through the proper legal documents. My 84 yo mother has an AND order in her charts - Allow Natural Death. She has made me promise to be a strong advocate for not allowing heroic measures. She has stated that she is ready to go and doesn't understand why the Lord hasn't taken her yet.

 

I've often thought about how things would be if we lived 100 or even 50 years ago. For so much of human history, and for those in medically needy circumstances around the globe, this artificial prolonging of life was/is a nonissue. With pharmaceutical advancements, many lives have been spared, but many are often stretched beyond the individual's own wishes. Such a complicated issue.

[Guest]

I guess it depends on time and place one lives in. War, disease, risky business, bad luck make it hard for a child to have a relative who lived into their 90s. My own dc only have 1 gp who lived past 65, and the one who died when they were in elementary schoo ages certainly did not want them to view or hear his dying. He said goodbyes to his children, but his gc never saw him the six months between his decision and the viewing. They werent allowed in the house,per his request. A dignified dying was what he wanted. Quick and simple, not drawn out.

Edited March 4, 2017 by Heigh Ho

[EMS83]

I'm sorry for your loss. You don't say what it is that your grandmother had, but for many diseases the death process even without medication involves days or even weeks of sleeping at the end.  If she was in pain, the morphine would have made the inclination to sleep even stronger.  The IV would have been life (and therefore pain) extending, which is why it was withdrawn.  All of this should have been spelled out in detail to your grandmother (and/or her caregiver) before the papers to accept hospice were signed. 

 

The morphine does decrease pain and increase sleeping, but it also slightly hastens death. Some patients prefer to have the least amount of pain possible and ask for larger doses even if it means they will not live long.  Others want only enough medicine to make the pain tolerable so they can have more time.

 

I wish learning about death and dying was standard curriculum.  This feels like something everyone should know.  Perhaps it used to be common, back when we kept grandparents in the home and children were exposed to death at young ages.

 

Thank you.  :)  She ended up with C Diff, but there was a lot going on there before that.  None of it on its own necessarily fatal, but all together and then C Diff on top of that... :(  The ventilator and meds were the only things keeping her stable.  I was thinking more of fluids rather than meds.  But when she indicated she wanted the tube out, the only option that allowed that was in-hospital hospice, which then took everything out.  The morphine was dosed because when asked if she wanted it, she shrugged.  The only thing anyone said regarding morphine was that its for the pain.  It just seemed like people are tracked into one of two options at that point.  Maybe this is practical?  Maybe those really are the only two options, all or nothing?  But it bugged me.  I'm not blaming the hospital for her death at all, though.  The feeling robbed was in reference to something else.  I just didn't love how it all unfolded at the end there.  Had she been permitted, she may have even asked for more morphine than they started her out on, but once they started, then she was not awake enough to talk.  I'm the one that pushed to ask her about removing the tube to begin with, right or wrong.  I just wanted her preferences voiced and followed and I feel like that option wasn't offered 100% once removing the tube came into play.

 

I agree with you about the bolded.  But I'm not sure it's as simple as an educational program; I think it's a cultural thing before it's an informational thing.  Both are necessary, though--especially with the sheer volume of information available these days.

[Guest]

Old people are pumped full of drugs to keep them alive. My grandad is 90 and is in end-stages dementia. He messes himself all the time and can't eat anything but baby food. My mom and dad are 70 and are caring for him full time. He's on cholesterol meds, blood pressure meds, prostate pills, etc. He's strong as an ox and not dying but his balance is shot and he falls all over the place. He busted his nose and spent time in ICU, then hospice, but they graduated him out of hospice once they realized he was going to recover. They can't legally pull his meds even though they're artificially prolonging his life. It's a morass.

 

I couldn't "like" this, but I wanted to let you know that I read it and understand what you are saying.  And speaking as a near-60yo who has spent the past two weeks and will spend the coming week doing physical labor for Mom and MIL, it is exhausting work.  And I'm not doing one TENTH what your mom and dad are doing.  

 

We went through a very abbreviated version of what you describe above with my dad, but after awhile, I think he just got worn out with his life being alllll about sleeping, personal care and *** the continual administration of medicine*** to prolong his life.  He held it together to go to one last family reunion, but within two days, you could practically SEE him fail.  He walked into the reunion, but 2 days later, he could not stand up to give us a farewell hug.  He was gone within 5 weeks.  

 

I'm glad I had time with my dad, but I do wonder about ... life extension.  It exhausted my mother and my sister caring for him.  

 

One thing I want to say about my dad:  In his last trip to the hospital (7 days and then 10 more days in skilled nursing care), I did all the admissions work and subsequent decision-making.  The doctors were *wonderful* in that they were blunt and direct.  It's not the world's best hand-holding bedside manner, but I appreciate beyond words the fact that they weren't trying to Cheer Me Up or Give Me Hope.  They told me the truth and expected me to make decisions.  I made the decisions, all right--but *****I knew what to decide because Dad had my back.*****    He (and Mom) had faced the fact that death would come to them (as it will to all of us) and so they put in writing what they wanted and we had talked about it so I knew I could do what they had asked.  (They never would have asked for assisted suicide, but HAD they, I could not have followed that request...see what I mean?)

 

So when the doctor said, at 2am, in my dad's room, "We can keep up with the medicine, but it is life extension, not healing," I knew what to say.  "Stop."  Because my dad (who could no longer speak) had told me what to say.  And that made all the difference.

 

When you are in the room, and you are making those decisions that go against every other experience you have with medicine--it is ALWAYS toward healing, getting better--it is very hard to make that shift.  Even though I knew what was *right*, it was very hard to say the words.  But I said them because my dad had said them on paper, we had "rehearsed" and he could no longer speak...so I knew what to say.  

 

ALL the difference in the world.  

 

And it happened well because my parents were realistic about death.  I thank them for this gift.  

[Jean in Newcastle]

I don't believe that most ICU nurses actually assist families in making end of life decisions.  Rather, it is hospital social workers, hospice personnel, and others who are skilled in discussing these nuanced issues with families and patients.  My husband is one of those people.  He works very hard at providing good information that is compassionate as well as accurate and in helping families when they might be stuck in the decision making process. 

 

Also - not all old people are pumped full of drugs or have low quality of life.  I don't think that people meant to say that, but some generalizations are being made. 

 

I agree that these decisions need to be made by individuals and their families. 

[Barb_]

I don't believe that most ICU nurses actually assist families in making end of life decisions. Rather, it is hospital social workers, hospice personnel, and others who are skilled in discussing these nuanced issues with families and patients. My husband is one of those people. He works very hard at providing good information that is compassionate as well as accurate and in helping families when they might be stuck in the decision making process.

 

Also - not all old people are pumped full of drugs or have low quality of life. I don't think that people meant to say that, but some generalizations are being made.

 

I agree that these decisions need to be made by individuals and their families.

You're right, that's not really what I meant to say. I meant that, by the time someone is 80 or 90, they are usually on multiple medications that are keeping them alive even in the absence of dementia or other acute illness. I've asked my mom why they can't just pull his meds and allow nature to speed things along since it's obvious that even my grandpa wants to die. It's seems like if they can pull a life support machine or a feeding tube, they could stop the cocktail of meds that are treating his other symptoms? Apparently that's a legal grey area.

[Jean in Newcastle]

You're right, that's not really what I meant to say. I meant that, by the time someone is 80 or 90, they are usually on multiple medications that are keeping them alive even in the absence of dementia or other acute illness. I've asked my mom why they can't just pull his meds and allow nature to speed things along since it's obvious that even my grandpa wants to die. It's seems like if they can pull a life support machine or a feeding tube, they could stop the cocktail of meds that are treating his other symptoms? Apparently that's a legal grey area.

 

My mother is 92 and is on less medications than I am.  She is not ready to just die.  She lives independently and is involved in art, politics and social activities.  She does have an advance directive and has let us know her wishes on end of life issues. 

 

My father's official cause of death at age 92 was "failure to thrive".  He was ready to die and his body obliged.  He waited long enough for me to come across country to see him and died two days later while I was there.  He had other complicating factors though including a bad fall the year before death.  A bad fall esp. with a break will often be a precursor to decline and then death in the elderly.  I worked hard to give him the level of palliative care he needed in those few days I was with him (with his approval since he too was sharp as a tack) since I believe that he had been in unnecessary pain and discomfort. 

 

[Catwoman]

You're right, that's not really what I meant to say. I meant that, by the time someone is 80 or 90, they are usually on multiple medications that are keeping them alive even in the absence of dementia or other acute illness. I've asked my mom why they can't just pull his meds and allow nature to speed things along since it's obvious that even my grandpa wants to die. It's seems like if they can pull a life support machine or a feeding tube, they could stop the cocktail of meds that are treating his other symptoms? Apparently that's a legal grey area.

Apparently, you don't know the same 80 and 90 year-olds that I know who are living very full lives. A woman I know recently died at 101. She had worked out at the gym and gone out to lunch with friends the day before she passed away.

 

I think you are doing some serious generalizing about the elderly, particularly about how "multiple medications are keeping them alive even in the absence of dementia or other acure illness."

 

And even if they are on multiple medications, so what? If those medications are helping them have an acceptable quality of life, who are any of us to decide that they shouldn't have those options available to them?

 

Edited to add -- I'm very sorry about your grandfather, Barb. :grouphug:

Edited March 4, 2017 by Catwoman

[Ottakee]

I agree this is a very gray area very often. Given the population I work with and numerous family situations I have dealt with this more than many.

 

I did just restate my wishes to my husband again today. Keep me comfortable....Give me the happy meds. I also told him if this ever comes to be for him to call one of my close friends that is a doctor and ask for her input. She knows my wishes.

[Barb_]

Apparently, you don't know the same 80 and 90 year-olds that I know who are living very full lives. A woman I know recently died at 101. She had worked out at the gym and gone out to lunch with friends the day before she passed away.

 

I think you are doing some serious generalizing about the elderly, particularly about how "multiple medications are keeping them alive even in the absence of dementia or other acure illness."

 

And even if they are on multiple medications, so what? If those medications are helping them have an acceptable quality of life, who are any of us to decide that they shouldn't have those options available to them?

 

Edited to add -- I'm very sorry about your grandfather, Barb. :grouphug:

I'm not making myself clear, apparently. Never mind.

[Closeacademy]

It's truly an awful thing to go through and have to make decisions on. And you always wonder afterwards if the right decision was made. It's something I don't want to ever go through again. I did feel comforted by the fact that they did do brain scans and found no activity before advising us on the best decision and just making things go slowly and comfortably. 

 

Even with plans, things don't always go that way. My uncle had a DNR but it wasn't on the hospital records. He had a heart attack while recovering from knee surgery one night in the hospital where he was doing well until that point and looking forward to going home the next day. They did CPR and brought him "back" but it takes a few days before they can do the brain scans to see if they are really still there and alive. He wasn't, so we had to make decisions as a family and do the comfort care. It was truly awful. If his papers had been on file, we wouldn't have had to go through that. But then if they had treated him like a heart patient and had him hooked up to monitors while he recovered he wouldn't have been left so long that it was too late in the first place.

 

So many things can go wrong at end of life. It's been almost three years and the pain is still there about these issues.

[catz]

I think this is so important to discuss.  My father collapsed suddenly, spent 5 days in ICU, and died after removal of life support in 2015.   He had a long term heart condition for 18 years with excellent quality of life - hiking and golfing within days of his death.  I wished every day he was in ICU that his heart would just stop.  Without paddles within seconds of no heartbeat, your brain is dying.  There was a 5 day protocol to declare him brain dead.  Chance of survival in cases like this is absolutely tiny but yet they do it anyway.  He had tons of advance directives and DNRs. 

 

That said, I know elderly people with high quality of life.  My MIL collapsed at the doctor's office 18 months ago in her mid 80's.  Has had heart problems/surgery.  She was resuscitated, diagnosed with arrhythmia, fitted with a pacemaker, and has had an excellent quality of life ever since.  Back to gardening and walking.  So when there is a chance for good continued quality of life, I don't think older people should be denied treatment either. 

[Catwoman]

I think this is so important to discuss. My father collapsed suddenly, spent 5 days in ICU, and died after removal of life support in 2015. He had a long term heart condition for 18 years with excellent quality of life - hiking and golfing within days of his death. I wished every day he was in ICU that his heart would just stop. Without paddles within seconds of no heartbeat, your brain is dying. There was a 5 day protocol to declare him brain dead. Chance of survival in cases like this is absolutely tiny but yet they do it anyway. He had tons of advance directives and DNRs.

 

That said, I know elderly people with high quality of life. My MIL collapsed at the doctor's office 18 months ago in her mid 80's. Has had heart problems/surgery. She was resuscitated, diagnosed with arrhythmia, fitted with a pacemaker, and has had an excellent quality of life ever since. Back to gardening and walking. So when there is a chance for good continued quality of life, I don't think older people should be denied treatment either.

I'm so sorry about your father. Sitting in a hospital room waiting for someone to die is absolutely horrible. :crying:

 

I think patients should be judged on a case-by-case basis, and that their age should not be the determining factor when treatment is being discussed. Many people -- doctors included -- share the opinion that once a person is over a certain age, he or she is probably ready to die anyway. :glare: It's so dismissive and disrespectful -- and inaccurate.

 

 

.

Edited March 4, 2017 by Catwoman

[Barb_]

I'm so sorry about your father. Sitting in a hospital room waiting for someone to die is absolutely horrible. :crying:

 

I think patients should be judged on a case-by-case basis, and that their age should not be the determining factor when treatment is being discussed. Many people -- doctors included -- share the opinion that once a person is over a certain age, he or she is probably ready to die anyway. :glare: It's so dismissive and disrespectful -- and inaccurate.

 

 

.

Totally not what I was saying or what anyone on this thread seems to be saying. I also know people in their 80s who are functioning well and lead vibrant lives, and in fact I hope to be one of them some day. I am saying that bodies wear out. That typically comes with disease coupled with age and it's frustrating that families are forced to artificially keep people alive who want to die.

[Barb_]

The title of the thread is "end of life." I assumed that's what we were discussing, not vibrant and healthy people.

[Katy]

I haven't taken the time to find the studies, but I remember being taught in nursing school that there are real and serious issues of age discrimination in older patients.  Apparently a great many patients aren't treated very aggressively based on the fact that they are old.  That given someone in their 60's and someone in their 80's, the person in their 60's who is in worse health will be given more aggressive treatment.  If the person in their 80's is treated as a younger patient there is in theory no reason that more people couldn't live well past the age of 100, at least those without degenerative conditions such as dementia.

[Catwoman]

Totally not what I was saying or what anyone on this thread seems to be saying. I also know people in their 80s who are functioning well and lead vibrant lives, and in fact I hope to be one of them some day. I am saying that bodies wear out. That typically comes with disease coupled with age and it's frustrating that families are forced to artificially keep people alive who want to die.

I wasn't responding to anything you posted. I was responding to this:

 

 

So when there is a chance for good continued quality of life, I don't think older people should be denied treatment either.

 

[Catwoman]

The title of the thread is "end of life." I assumed that's what we were discussing, not vibrant and healthy people.

 

When you posted this, it sounded like you were speaking generally about people who were 80 or 90, not about people in an "end of life" situation:

 

I meant that, by the time someone is 80 or 90, they are usually on multiple medications that are keeping them alive even in the absence of dementia or other acute illness.

 

Edited for typo.

Edited March 4, 2017 by Catwoman

[Catwoman]

I haven't taken the time to find the studies, but I remember being taught in nursing school that there are real and serious issues of age discrimination in older patients. Apparently a great many patients aren't treated very aggressively based on the fact that they are old. That given someone in their 60's and someone in their 80's, the person in their 60's who is in worse health will be given more aggressive treatment. If the person in their 80's is treated as a younger patient there is in theory no reason that more people couldn't live well past the age of 100, at least those without degenerative conditions such as dementia.

:iagree:

[Barb_]

When you posted this, it sounded like you were speaking generally about people who were 80 or 90, not about people in an "end of life" situation:

 

 

 

Edited for typo.

I'm too close to this and can't discuss it in a rational manner.

[Jean in Newcastle]

I haven't taken the time to find the studies, but I remember being taught in nursing school that there are real and serious issues of age discrimination in older patients. Apparently a great many patients aren't treated very aggressively based on the fact that they are old. That given someone in their 60's and someone in their 80's, the person in their 60's who is in worse health will be given more aggressive treatment. If the person in their 80's is treated as a younger patient there is in theory no reason that more people couldn't live well past the age of 100, at least those without degenerative conditions such as dementia.

I too have seen a lot of age discrimination. And disability discrimination. There is a reason why good hospitals have an entire team to deal with these issues.

[Laura Corin]

You're right, that's not really what I meant to say. I meant that, by the time someone is 80 or 90, they are usually on multiple medications that are keeping them alive even in the absence of dementia or other acute illness. I've asked my mom why they can't just pull his meds and allow nature to speed things along since it's obvious that even my grandpa wants to die.

It's a good question. If an old person refuses meds, will others be accused of failing in a duty of care, if the old person is still competent?

 

My mum is on pain relief for old joints and anti depressants. That's it at age 92.

[Audrey]

IMO, what the person wants should be respected. Period.

 

Personally, I'm not doing this crap again.  I'm relieved that, where I live, there is a legal medical solution I can access if/when I want it.  Even if it weren't there, I intend to have an Old Yeller end. Make it quick and I'm done.