America, We Have to Talk About Death

 

America is generally a pretty optimistic country.  It makes sense.  We are a people that came from distant shores to join the people born here to create a wonderful mishmash that holds certain Truths to be Self-Evident.  People who did not believe in these common truths would not have survived here or stayed here.  This would not be the land they chose to raise children.  They would flee for easier paths.  I know, America, it’s been a rough 200 years or so.  We’ve been through a lot together.

We have done so much to foster life in this country.  We have developed spectacular, truly spectacular, medical advancements that have propelled us into the higher life expectancies.  We discovered hand washing (at least in the sense that it was totally necessary in medical care).  In 1879, we created the vaccine for cholera.  In 1902, an American (Karl Landsteiner) developed ABO blood typing.  Paul Zoll invented the first cardiac pacemaker in 1952.  These are such wonderful innovations!  We have sustained life in so many complex cases that used to be fatal.  There were no treatments for the disease, just the symptoms.  People used to suffer needlessly because we did not have the technology to help them.

But America, people now suffer needlessly because of the technology we have.

I know, we are generally a forward-looking people.  We are a people of hope and often, of faith (in something, anyway).  We see miracles every day.  We pray for miracles every day.  We face down fear and death and we keep on going.

Sometimes, though, it is time to sit down with Death and come to terms.

America, Death is also a part of life.  Death is the natural conclusion of certain processes.  We can push it further away and perhaps even delay it for a while, but death is inevitable.  Death happens for all of us.  Young, old, sick, and otherwise healthy.  Death does not discriminate.

We need to face Death, America.  We need to understand it and we need to stop fearing it to the point that we never let it enter our thoughts or our conversations.  We need to talk about Death.  We need to talk about dying.  We need to talk about the process of natural death; the slowing down and winding down of the processes of the body.  We also need to talk about preparing for death.  I know, I know.  This isn’t a fun conversation.  But it is necessary.  See, America, we have done everything to prevent death.  But death will still happen.  Death is not a matter of if, but when.  So when it comes, and it will, we need to be prepared.  We need to know what you want.  We need to know how you want to live, but more importantly perhaps, we need to know how you want to die.

Do you want your death to be according to age or according to function?  If you are 96 years old and are still completely intact, independently living but get hit by a car, do you want to be resuscitated because your heart has stopped?  Do you want to accept your natural death?  What if you are 22 years old and have multiple chronic health issues when that car hits you?  What about then?  What means more to you, time or quality?  Do you want to be put on life support for your family, so that they can come to terms with your impending death?

We say life support.  We say resuscitation.  These are clean words.  These are nice words.

Make no mistake: it is not clean.  It is not nice.  It is not gentle.

The reality, America, is much harder to face.  Do you want a team of six people compressing your ribs two inches in depth (probably breaking them in the process) in order to make your heart pump blood?  Do you want someone putting a tube into your windpipe so that you can get some oxygen into your lungs?  Some people say no, they want a DNR.  They want a limited DNR.

They do not want those violent compressions.  They do not want that intrusive intubation.

But please, please, give epinephrine!  Give drugs!  Save lives!

America, when the heart is not beating there is no circulation.  When there is no circulation, the drugs do not move anywhere.  If the drugs do not move anywhere, they are not pushed around the body.  Are you starting to understand, America?  You can say no compressions, but what you mean is that there will be no pumping.  If there is no pumping, then why medications?

We need to think about this now, America, before it is our own time to go (by whatever cause).  We need to think about the ways that we want to live (if I can’t breathe, do I want a tracheostomy?) and the ways we want to die (at home or in the hospital?).  Maybe even more importantly, we need to talk about this.  We need to talk about this with each other.  We need to talk about this with our families.  We need to talk about it early and we need to get it in writing.

America, this is not about giving up.  This is about keeping control.

Americans like their independence.  We like to choose how we are going to live our lives.

If we want to keep our independence and our dignity, we need to think further down the line.  Choose how you are going to live.  Tell others how you choose to die.

I’m glad we had this talk, America.  Same time again next year?  I suspect we might need a reminder by then.

Published in Healthcare
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  1. Gary McVey Contributor
    Gary McVey
    @GaryMcVey

    A great reminder of reality. Thanks, TRN. 

    • #1
  2. OldPhil Coolidge
    OldPhil
    @OldPhil

    In the last year, too many Americans have forgotten that many people have always died from viruses, especially new ones. But they’d rather we destroy the country instead.

    • #2
  3. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    OldPhil (View Comment):

    In the last year, too many Americans have forgotten that many people have always died from viruses, especially new ones. But they’d rather we destroy the country instead.

    That is it’s own issue.  This is about people not knowing when or how to give up.  This is about people not understanding that multisystem failure can still kill you and that there isn’t always a cure.  We might be able to bring you back and put you on a machine until you basically liquefy (sorry, but that’s kinda what happens).  But is that really, really what we’re wanting to do?

    Is that, as a nation, what we think healthcare is about?  Do we really want that for ourselves and for our loved ones?

    If you do, okay.  But people need to walk into it knowing what they’re asking for and what they will be getting.  Too many times, people do not know what these measures do to people.

    • #3
  4. Bob Thompson Member
    Bob Thompson
    @BobThompson

    Yes, we have been in reverse for the last year. Texas is open.

    • #4
  5. GLDIII Temporarily Essential Reagan
    GLDIII Temporarily Essential
    @GLDIII

    Did somebody just turn 40?

    • #5
  6. OldPhil Coolidge
    OldPhil
    @OldPhil

    TheRightNurse (View Comment):

    OldPhil (View Comment):

    In the last year, too many Americans have forgotten that many people have always died from viruses, especially new ones. But they’d rather we destroy the country instead.

    That is it’s own issue. This is about people not knowing when or how to give up. This is about people not understanding that multisystem failure can still kill you and that there isn’t always a cure. We might be able to bring you back and put you on a machine until you basically liquefy (sorry, but that’s kinda what happens). But is that really, really what we’re wanting to do?

    Is that, as a nation, what we think healthcare is about? Do we really want that for ourselves and for our loved ones?

    If you do, okay. But people need to walk into it knowing what they’re asking for and what they will be getting. Too many times, people do not know what these measures do to people.

    I watched it happen to my sister two years ago with sepsis. After 6 weeks on every kind of machine imaginable, she’s the one who finally decided it was enough.

    • #6
  7. HankRhody Freelance Philosopher Contributor
    HankRhody Freelance Philosopher
    @HankRhody

    TheRightNurse: We need to know how you want to live, but more importantly perhaps, we need to know how you want to die.

    • #7
  8. Miffed White Male Member
    Miffed White Male
    @MiffedWhiteMale

    Just coincidentally, my dad died 26 years ago today, two days after his congestive heart failure worsened to the point that he dropped off the heart transplant list.  He had just turned 69.

     

     

     

    • #8
  9. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    GLDIII Temporarily Essential (View Comment):

    Did somebody just turn 40?

    No.  However, somebody is tired of having to explain to patients’ families over and over and is tired of reading about limited DNRs where people want “everything but compressions”.  Great.  So we’ll shock your heart, which is not at all like jumpstarting a car.  We’ll force oxygen into your lungs.  We’ll start IVs everywhere and push medication through it.

    And it’ll just sit there.

    People working like crazy to fix someone that cannot be fixed by means that simply, mechanically, cannot work.

    It’s futile.  I think people really do not understand how any of this works.  If they did, maybe they would stop with some of this “limited” stuff.

    • #9
  10. Juliana Member
    Juliana
    @Juliana

    While not medical in nature, I just read a book called Inheriting Clutter by Julie Hall. She made many of the same points regarding being prepared – with documents, health care directives, and distributing all our stuff. We do need to stop thinking we are going to live forever, and there’s always tomorrow. 

    Thank your for your insight and reminders, @therightnurse.

    • #10
  11. Clavius Thatcher
    Clavius
    @Clavius

    This is great advice.  My Mother died a year ago.  She had a stroke and was not getting better after five days.  She had an ironclad DNR in place.  My brother and I had only one decision to make:  To admit the truth that she had limited recovery options.  With that, the entire course of her care was determined by the terms of care (or whatever that document is called).  She was taken off her IV and passed peacefully in the next day.

    My only regret is that I did not make it to Marquette before she passed.  But I was there to take care of all the post-death logistics, which was a blessing for the family and the least I could have done.

    • #11
  12. Nohaaj Coolidge
    Nohaaj
    @Nohaaj

    Death used to be a natural progression. People died in the home,  and wakes were there, with family and friends present. My former wife absolutely did not want our then 2 year old son attending her dad’s funeral because “it would be too traumatic”. For her family,  death and funerals were dark scary traumatic events. 

    I attended an Irish funeral for a pair of college age girls who died in a tornado.  There was upward of a thousand people who attended,  with bands, and stories. Ohhh the stories. We laughed as we cried.

    We brought my dad home 11 years ago and provided hospice for him after his long battle with leukemia. It was one of the most beautiful and fulfilling periods in my life. Dad died in full faith, with grace and humor. He taught me as much in death as in life.

    Death does not need to be scary,  being realistic and informed is a critical part of the process. 

    • #12
  13. Bob Thompson Member
    Bob Thompson
    @BobThompson

    TheRightNurse (View Comment):

    People working like crazy to fix someone that cannot be fixed by means that simply, mechanically, cannot work.

    It’s futile. I think people really do not understand how any of this works. If they did, maybe they would stop with some of this “limited” stuff.

    I’m with you on this issue but I have a question. When you say you think people do not understand, how can this be? Has the medical community somehow failed in the process of delivering these facts to those who then ask for the impossible?

    • #13
  14. HankRhody Freelance Philosopher Contributor
    HankRhody Freelance Philosopher
    @HankRhody

    Nohaaj (View Comment):
    I attended an Irish funeral for a pair of college age girls who died in a tornado. There was upward of a thousand people who attended, with bands, and stories. Ohhh the stories. We laughed as we cried.

    • #14
  15. GLDIII Temporarily Essential Reagan
    GLDIII Temporarily Essential
    @GLDIII

    , TheRightNurse (View Comment):

    GLDIII Temporarily Essential (View Comment):

    Did somebody just turn 40?

    No. However, somebody is tired of having to explain to patients’ families over and over and is tired of reading about limited DNRs where people want “everything but compressions”. Great. So we’ll shock your heart, which is not at all like jumpstarting a car. We’ll force oxygen into your lungs. We’ll start IVs everywhere and push medication through it.

    And it’ll just sit there.

    People working like crazy to fix someone that cannot be fixed by means that simply, mechanically, cannot work.

    It’s futile. I think people really do not understand how any of this works. If they did, maybe they would stop with some of this “limited” stuff.

    Dear, after watching them ignore my father’s DNR orders, I made mine a bit more explicit. He was 75 and I am currently 62. He was going from lung cancer, and then developed pneumonia 2 days after the first round of chemo. Mom & I were with him as he was “drowning” and was begging the internist thru his oxygen mask to not ventilate him. Late that night when he drifted off (sleep/conscience?) we went home. Seven hours later I came back in and he was intubated and on machine.  The Dr’s tried to convince my mother that if they could get his stripped immune system to rally, perhaps that could continue with the chemo to beat back the cancer riddle lungs, they were guessing three to six weeks on “the machines”.  It required my mom and me browbeating the Dr’s that morning to remove the ventilation, let him go, and to honor his wishes as he was imploring them to do the night before.

    We are also witnessing the decay of my 87 yr old father in law who’s dementia is bad enough that he no long has his own POA, but still enough awareness to be frustrated with all of his other quality of life issues (he can barely hear, vision so poor he cannot read, hates TV). I think he would pull his plug if he knew how given his bitterness at existing without the ability to do anything. I watched my mom start down that path with cognitive problem from a meningioma and about two years after it was “discovered” it finally compresses her into her autonomic functions that she passed at 86.

    There is a certain simplicity of a quick plumbing failure like both my grandfathers, however if that was the case I would be gone by now, or about a decade away depending who’s genetic profile I am going to track.

    The big desire at this point is survive long enough to enjoy hopefully a bunch of grandchildren, however one does not push one’s children too hard for that step.

    • #15
  16. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    Bob Thompson (View Comment):

    TheRightNurse (View Comment):

    People working like crazy to fix someone that cannot be fixed by means that simply, mechanically, cannot work.

    It’s futile. I think people really do not understand how any of this works. If they did, maybe they would stop with some of this “limited” stuff.

    I’m with you on this issue but I have a question. When you say you think people do not understand, how can this be? Has the medical community somehow failed in the process of delivering these facts to those who then ask for the impossible?

    Yes.  And no.

    That’s like blaming the medical community for depression, the opioid crisis, and obesity.  We can tell you in 100 ways.  But if you do not want to hear it, you will not.  Some people are in denial.  It does not matter how you phrase it.  We have had patients on the brink of death where the family will insist, “He’s a fighter!”  And while that may be true, with metastatic lung cancer that has invaded the entire body, all of the major organs, with every system failing… sometimes there’s just nothing to be done.  There is nothing to fight.  Fighting implies the ability to win.  There is no winning against a natural process when the body is shutting down.

    These are the people that you cannot tell what it all means.  They see reflexes as positive proof that they’re “getting better”.  They see what they want to see.  Only.

    The time to explain this to them was months ago when they first had cancer.  The time to explain this was in their 30’s at a regular doctor’s appointment.  The time to explain this was in childhood, when a family member died.  

    As a society, this is not a doctor’s responsibility.  It is our job, as a society, to understand the limits of our technology.  We have the right to try, absolutely. But we also need to understand how death operates and that it is natural.  It is the end of living as we know it.  Culturally, Americans do not do well with this.  Funerals are “creepy”.  Morticians are “weird”.

    Doctors can only explain so much, particularly when a patient is in the hospital, prior to a crisis moment.  Also, doctors are humans.  No one wants to be the person to bluntly say, “Your mother is dying. It’s time to give up.”  It isn’t the job of healthcare professionals.  We cannot tell you what is right or wrong.  We cannot make people understand.  We give options, we explain.  More often than not, doctors try to be sparing of people’s feelings.  Sometimes that’s wrong and unfair to the patient.  

    But we try.

    Also, reduce your stress, eat a low fat diet, exercise and drink enough water, mmkay?

    • #16
  17. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    Nohaaj (View Comment):

    Death used to be a natural progression. People died in the home, and wakes were there, with family and friends present. My former wife absolutely did not want our then 2 year old son attending her dad’s funeral because “it would be too traumatic”. For her family, death and funerals were dark scary traumatic events.

    I attended an Irish funeral for a pair of college age girls who died in a tornado. There was upward of a thousand people who attended, with bands, and stories. Ohhh the stories. We laughed as we cried.

    We brought my dad home 11 years ago and provided hospice for him after his long battle with leukemia. It was one of the most beautiful and fulfilling periods in my life. Dad died in full faith, with grace and humor. He taught me as much in death as in life.

    Death does not need to be scary, being realistic and informed is a critical part of the process.

    I really think that the US needs to get back to cultural roots.  I’m not sure where our creeping fear of death truly began (I’m sure anyone with mortuary experience can probably explain), but I know it has been an unhealthy obsession.  We do not want to age.  We do not want to die.  And we pass these values on.

    I think what you did for your father is a wonderful gesture of love and service.  Hospice can be very difficult for people, because it can go on for a very long time (as can palliative care, which is slightly different).  But it does not need to be a negative experience.  It is a winding down.  It’s an end to searching and to struggle.  In many ways and for many people, it is a relief.  People are hesitant to say that, because they feel like it is admitting to wanting a loved one’s death.  It isn’t about that, though.  It is about providing quality time while no longer struggling for a curative treatment.  It’s about accepting what is and moving forward, whatever that might be.  Strangely, some people in hospice actually find themselves cured and have to be taken off of hospice service because they’re no longer expected to die in the next 6 months to year!

    I regularly tell my family what I want for my funeral.  God forbid it be any time soon, but I have a few little things I want.  I actually think about it more than I ever did my wedding!  Of course, death is a more final transition….  But in my family, we talk about death frequently.  We are not morbid; it’s often with great humor!  But this is how death should be treated.  It is like births, like aging.  It’s just another part of life.

    • #17
  18. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    GLDIII Temporarily Essential (View Comment):
    Dear, after watching them ignore my father’s DNR orders, I made mine a bit more explicit. He was 75 and I am currently 62. He was going from lung cancer, and then developed pneumonia 2 days after the first round of chemo. Mom & I where with him as he was “drowning” and was begging the internist thru his oxygen mask to not ventilate him.

    That is truly, truly awful.  He told them and they didn’t put it in the chart?

    Now, I will say this: pneumonia from chemo is not uncommon.  One can rally, particularly if one has been intubated to give the body a rest from working so hard to breathe.  When there’s that much fluid, people will often say that they would rather die, etc, etc.  Doctors are put in a horrible position then.

    However, if he’d said it going on that he didn’t want that, I hope the doctors who violated his orders thank their lucky stars every day that you didn’t take their license.  I hope that they remember him every time they walk in the doors and I hope that every time a patient asks for a DNR, they feel a little bit ashamed of themselves and remember never to put their own opinions/desires before that of their patients.

    It is a large part of medical training to discuss death, DNR, and possible litigation.  It is easier to defend treating than a lack of treatment.  Even if the patient wanted it that way, families do regularly bring suit against physicians for not resuscitating their loved ones.  The opposite, of course, is also true (we’re a litigation-happy society).

    I hope that you continue to live, healthfully, for many years and enjoy a team of little grandbabies/honorary grandbabies.

    • #18
  19. Captain French Moderator
    Captain French
    @AlFrench

    TheRightNurse (View Comment):

    GLDIII Temporarily Essential (View Comment):

    Did somebody just turn 40?

    No. However, somebody is tired of having to explain to patients’ families over and over and is tired of reading about limited DNRs where people want “everything but compressions”. Great. So we’ll shock your heart, which is not at all like jumpstarting a car. We’ll force oxygen into your lungs. We’ll start IVs everywhere and push medication through it.

    And it’ll just sit there.

    People working like crazy to fix someone that cannot be fixed by means that simply, mechanically, cannot work.

    It’s futile. I think people really do not understand how any of this works. If they did, maybe they would stop with some of this “limited” stuff.

    If it doesn’t work, why do the hospitals do it?

    • #19
  20. Chuck Thatcher
    Chuck
    @Chuckles

    Some years ago John Dunlop,an MD who is board certified in Geriatics, wrote “Finishing Well to the Glory of God”.  While written from a decidedly Christian perspective, the practical advice he gives should be profitable to all – and, I believe, wholly in line with this post.  The wife and I read the book, sent copies to others, and placed multiple copies (with permission) in our Doctor’s waiting area.  

     

     

    • #20
  21. Chuck Thatcher
    Chuck
    @Chuckles

    TheRightNurse (View Comment):
    Strangely, some people in hospice actually find themselves cured and have to be taken off of hospice service because they’re no longer expected to die in the next 6 months to year!

    A dear friend, whose youngest son was at the time 13, had exactly this experience.  She passed away five years later.  

    • #21
  22. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    Captain French (View Comment):

    TheRightNurse (View Comment):

    GLDIII Temporarily Essential (View Comment):

    Did somebody just turn 40?

    No. However, somebody is tired of having to explain to patients’ families over and over and is tired of reading about limited DNRs where people want “everything but compressions”. Great. So we’ll shock your heart, which is not at all like jumpstarting a car. We’ll force oxygen into your lungs. We’ll start IVs everywhere and push medication through it.

    And it’ll just sit there.

    People working like crazy to fix someone that cannot be fixed by means that simply, mechanically, cannot work.

    It’s futile. I think people really do not understand how any of this works. If they did, maybe they would stop with some of this “limited” stuff.

    If it doesn’t work, why do the hospitals do it?

    “Rights”.  People and their designees are allowed to determine amount of care.  In egregious cases, it can go to an ethics board.  But that is not very common.

    • #22
  23. GLDIII Temporarily Essential Reagan
    GLDIII Temporarily Essential
    @GLDIII

    TheRightNurse (View Comment):
    I hope that you continue to live, healthfully, for many years and enjoy a team of little grandbabies/honorary grandbabies.

    Do you have something to quietly whisper in my ear dear?

     

    • #23
  24. navyjag Lincoln
    navyjag
    @navyjag

    GLDIII Temporarily Essential (View Comment):

    TheRightNurse (View Comment):
    I hope that you continue to live, healthfully, for many years and enjoy a team of little grandbabies/honorary grandbabies.

    Do you have something to quietly whisper in my ear dear?

     

    Where is Dr. B on this one?  Have a nephew who is an ER doc in Illinois but this conversation a little above my pay grade.  Always relied on the Navy HM’s and docs when I was in the service and doing fine at 74.  So frankly would prefer not to think about this for a few years. 

    • #24
  25. OmegaPaladin Moderator
    OmegaPaladin
    @OmegaPaladin

    Sorry, not interested in dying.   Beat the crap out of me if I am near death and am not an obvious lost cause.  I don’t want to get marked as DNR for political reasons.

    • #25
  26. Gary McVey Contributor
    Gary McVey
    @GaryMcVey

    OmegaPaladin (View Comment):

    Sorry, not interested in dying. Beat the crap out of me if I am near death and am not an obvious lost cause. I don’t want to get marked as DNR for political reasons.

    I’m a big fan of Ring of Honor’s “franchise man”, amiable Jay Lethal. But I’m cautious about buying his merch. Nobody my age wants to be carried into an ER wearing a shirt that cries out, “Lethal Injection!”

    • #26
  27. James Lileks Contributor
    James Lileks
    @jameslileks

    My biggest fear isn’t that I will fall over suddenly and irrevocably dead while walking downtown after taking some pictures of a new building going up or an old building going down, but that I won’t. 

    • #27
  28. Joseph Stanko Coolidge
    Joseph Stanko
    @JosephStanko

    TheRightNurse (View Comment):
    I really think that the US needs to get back to cultural roots. I’m not sure where our creeping fear of death truly began (I’m sure anyone with mortuary experience can probably explain), but I know it has been an unhealthy obsession. We do not want to age. We do not want to die. And we pass these values on.

    I assume it has something to do with the decline in religious practice and belief in the afterlife.  Our cultural roots are deeply Christian, and traditional American funeral services reflect this.  It’s harder to cope with the death of a loved one if you have no hope of seeing them again one day in Heaven, and harder to face one’s own death if it’s a yawning black void of nothingness.

    • #28
  29. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    James Lileks (View Comment):

    My biggest fear isn’t that I will fall over suddenly and irrevocably dead while walking downtown after taking some pictures of a new building going up or an old building going down, but that I won’t.

    Same here.  I really don’t want a g-tube put in when the rest of my body is failing im hopes that it’ll get better.   I don’t want to take up an ICU bed when what I need is comfort on.my way out.  It’s honestly one of my biggest fears.

    That and being hit by a car and put into an emergency contrast CT when no one knows I’m allergic to contrast.

    • #29
  30. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    Joseph Stanko (View Comment):

    TheRightNurse (View Comment):
    I really think that the US needs to get back to cultural roots. I’m not sure where our creeping fear of death truly began (I’m sure anyone with mortuary experience can probably explain), but I know it has been an unhealthy obsession. We do not want to age. We do not want to die. And we pass these values on.

    I assume it has something to do with the decline in religious practice and belief in the afterlife. Our cultural roots are deeply Christian, and traditional American funeral services reflect this. It’s harder to cope with the death of a loved one if you have no hope of seeing them again one day in Heaven, and harder to face one’s own death if it’s a yawning black void of nothingness.

    While I think there’s something to this, it does not explain how other, less religious countries do not have our same problem.  I think it is our drive for immortality.  There’s something about nations that have existed for a few thousand years; they do not seem to have these problems.  

    I think it isn’t just a loss of religion.  I think that we were never great about death, as America, in the first place.  

    The old countries have it right.  Wakes.  Ancestor altars.  They keep their dead close.  We shut ours away, like it’s contagious.

    • #30