This time of year, we get them. Patients so gravely ill that they must be placed on life support. Ventilator, pressors, art lines, central lines, Swans, trans venous pacing, CVVH. And when all of these have failed, or are failing, the families want to keep their loved ones 'alive' until the holidays are over. I'm talking about patients for whom the term "futility of care" was created. And I just don't know which is worse...The families who want their loved ones to maintain a heartbeat until the holidays are over or the physicians who acquiesce to their demands.
Have we, as a society, become so reality averse that the thought of a family member passing during the holiday season is simply unbearable? Which would people have as a last memory of their loved ones? Passing peacefully at home on hospice...? Or tied to multiple life support systems as their systems shut down, they weep from every extremity and their skin sloughs off to the touch?
Too many families faced with this insist on 'everything' being done for their loved ones with no real comprehension of just how much and how far 'everything' can go. And the healthcare community won't stop and educate them as to just what 'everything' entails. It's a sad fact at this time of year, and it will continue so long as physicians fail to make the situation crystal clear to families with a loved one at the end of their days. Such cases not only use up valuable resources and critical care beds, they deny access to those who would benefit most from them. Never mind the emotional toll such patients take on the staff assigned to care for them, as they watch their efforts go for naught. And all because people fear their own, and their loved ones, mortality. Fear begins when you suspect your mortality and ends when you accept it.
Specializes in CCU, SICU, CVSICU, Precepting & Teaching.
i just went to a very sad funeral 1 week before christmas. this person was confined to a nursing home for almost 15 years dx with lewy bodies ( since 40 years old). i was thinking how terrible it would be to have a xmas eve funeral and was releaved for the family that they did not have to bury there family member on or close to xmas. there are always an increase in deaths around this time of year. we just need to remember no matter what the situation is, we are there to assist them in anyway we can.
huh? what is "dx with lewy bodies"? and it's christmas, not "christmas" or "xmas".
Specializes in CCU, SICU, CVSICU, Precepting & Teaching.
let's just remember that the "choice" here belongs to the family, not the physician or any other healthcare staff, and it's not our place to judge it.
i think the choice ought to belong to the patient, not the family. but in the case that they have failed to make their wishes clear and it is up the the family, i think most families were make better choices were they better informed. sadly, physicians these days cannot seem to bring themselves to have that conversation with family members. i think if they told it straight, many families would be empowered to choose dnr status over the futility of flogging a failing body. unfortunately, families need to hear it straight and the physicians i'm working with these days seem to dance around saying "there's nothing more we can do" rather than just coming out and saying it.
Specializes in CCU, SICU, CVSICU, Precepting & Teaching.
i blame tv & the media. how many times have u seen a tele-drama, movie whatever about someone on their deathbed & the granddaughter is just about to give birth to the newest baby, so grandma/grandpa must be kept alive, no matter what? grandma has probably had enough of life and wants to go but doesn't seem to have much choice in the matter. and some drs & nurses treat old people like they're idiots too. it also annoys me when on these tv dramas, they say something like such & such has an incurable disease, like a rare brain tumour (or whatever), and there just happens to be some new drug/surgery that's being tested, so they do it on the person and they live just that little while longer. that's the message society gets from all this media bs.
too many people don't want to live in reality. tv, movies & dramas are a huge, influential part of people's lives today.
as children also we are not taught to accept death. when we're little, we see squished insects, or may get taken to a funeral but we don't really know what's going on. we are not taught that death is a natural part of life, even accidents leading to death are still part of the life cycle. we cannot accept it as a society. but my theory is once we start teaching children in an appropriate way, death will not become so scary. my sister would never tell her kids that their dog died or whatever, cos she didn't want them upset, she would just say some nice people took him to their farm. but i think when children do see things like that (in an appropriate setting of course), they can process the information better in their brain, and come to accept death as part of life.
we don't know what it's like at the edge of death, though we've all heard the stories about the tunnel and lights, and feeling of peace. i myself don't fear it, though i will be scared at the end no doubt. depends on what u believe i suppose. my ex-boryfriend is a buddhist & he really believes he will go to a higher/different plane (don't know everything they believe), & told me he doesn't fear death at all.
i remember a nurse arguing with a dr re a 90 or 92 year old lady in the hospice, they wanted to do a colonoscopy on her to have a look at what was cancerous polyps or something, to try & treat them to give her a bit more time. well this lady knew her time had come. she didn't have dementia & didn't want to live anymore. she told us she'd had a wonderful life, had married the man she loved (who was now dead), had travelled, had her grandchildren by her side & just wanted to die at home. the drs were really gung-ho about doing this procedure. well my friend who was a very experienced hospice nurse just stood up to all of them, even the director of hospice, & said she would not allow them to do any procedures. i was so proud of her that day, advocating for her patient. and later this lady went home & the community hospice nurse told me she died not long after at home, & she looked very peaceful and content.
i was so very glad to hear that.
i've been saying for years that people seem to learn how to behave when a relative is hospitalized from watching tv shows like "er," "gray's anatomy" and "nurse jackie." which is sad, because those shows are all about entertainment. having people behave in a decorous, classy manner is just not as entertaining as over the top drama and carrying on. people these days seem to think they're supposed to micromanage, verbally abuse the staff and threaten to sue over every little thing. if they don't create enough drama, they don't care enough.
tv shows dance around the subject of death just like physicians do. everyone knew that the unknown red shirt on star trek was going to be killed on the away mission, and everyone knows that the main characters on "gray's anatomy" won't really die. people watch those shows and see meredith being pulled out of elliott bay all blue and lifeless, but miraculously come back to life after her friends and colleagues perform some medical act of "heroism" on her. can we blame them for thinking that perhaps we have a miracle in store for grandma, too? after all, half of the world's population has a below average iq, and a good many of them "learn" from television!
let me just put this out there, too: i've seen many families -- far too many to count -- want to keep grandma alive until after this month's social security check arrives. so in this case, let's keep them alive until after the new year.
i think the choice ought to belong to the patient, not the family. but in the case that they have failed to make their wishes clear and it is up the the family, i think most families were make better choices were they better informed. sadly, physicians these days cannot seem to bring themselves to have that conversation with family members. i think if they told it straight, many families would be empowered to choose dnr status over the futility of flogging a failing body. unfortunately, families need to hear it straight and the physicians i'm working with these days seem to dance around saying "there's nothing more we can do" rather than just coming out and saying it.
i was including the pt as part of the family. it is ultimately the pt's choice, unless the pt has not expressed any wishes regarding end of life and then no longer can when the time comes. but even if the pt does make the decision he/she needs to discuss it with the rest of family so there is no question about what is to be done when the time comes.
I too have had families request momma be kept alive until the next social security check could be cashed. Most recently saw a 70 y/o intubated *against her will* at insistence of the family who lived (illegally) in her subsidized apartment and had no where else to go. Therefore momma had to be kept alive at all costs. Last I knew this unfortunate woman was still alive, on the vent, and unweanable. She was going to be sent to some facility that could manage her long term vent needs. No idea how long it will take TPTB to figure out she doesn't need her subsidized apt.
yeah, well my story is the 80 something year old that they vented then made a DNR and were going to withdraw after christmas..... this patient spent christmas eve and christmas day alone, as the "family" had their own celebration. Well he died soon after, alone, on a vent, which happens regularly.
I've gotten past trying to beat common sense into senseless families, what they don't understand in their selfishness is that it's US, nurses, who sit at the bedside and stroke their loved ones head, hold their hand in death because they are too self important to "suffer" through it, and it's all about them, never about my patient.
I've grown to HATE many families and simply snub them, with their self indulged demands that VIOLATE my patients wishes. I've wanted to leave what I love, many days because of them. And yet, they are so un-important to me that I just keep showing up and doing what we do, because when I'm there at the end and I've done my best, it makes me whole. I just wish the family had the brass ones to do what is right, but I'm learning I only have control of me and the patient, and it has to be enough, because the family doesn't allow for more.
my heart breaks with you, but I make a difference in the ways allowed to me and try my hardest to get my patients demands met, and usually fail, it's part of what we do.... Advocacy has been drilled in from day one, and we have to keep finding a way around it.
I was including the pt as part of the family. It is ultimately the pt's choice, unless the pt has not expressed any wishes regarding end of life and then no longer can when the time comes. But even if the pt does make the decision he/she needs to discuss it with the rest of family so there is no question about what is to be done when the time comes.
my mom never expressed any wishes whatsoever.
the day after thanksgiving in 2004, she was dx'd w/aml, and her prognosis was very poor.
she still opted for chemo, and became septic, lost consciousness and died that way.
still, all of us knew how mom felt about the whole aging/death thing, and couldn't have handled a death sentence.
while i understand family members not wanting to make 'that' decision, i don't fully understand the contention that one just doesn't know what to do.
if you love someone, one should have an idea of what their wishes would be.
You know, it just seems to me, that if it is not Christmas, it's someones birthday, or anniversary, or christening or the all too real "I just can't face this right now".
exactly.
my mil died in 9/09, but come this past Christmas, my husband was still incredibly weepy.
holidays are going to do that to us, for a while...
regardless if our loved one died around that time, or any other time of the yr.
we americans, have an incredibly unhealthy aversion to death.
i don't know if we'll ever learn how to 'deal'.
i would like to defer to our dr's, but most of them are just as useless (or even harmful!), when it comes to eol issues.
Ruby Vee, BSN
17 Articles; 14,051 Posts
huh? what is "dx with lewy bodies"? and it's christmas, not "christmas" or "xmas".