I'm absolutely overwhelmed with your positive responses to my previous post, "Checkout time". Thank you. It's my most commented-on post, ever.
I didn't expect so many would see it from my side.
I'm just one doctor. I can't change the world.
But maybe sending a link to the post to others who DON'T see this side of dying will help more people understand. So if any of you want to, go ahead.
Death touches all of us. Thinking about it in advance won't stop that. But it can help us deal with it better when the time comes.
I was so surprised by your responses that I didn't put up any of my usual stories from the medical trenches. We will return to our regular program format of sarcasm and medical practice idiocy tomorrow.
Just read your "Checkout time" article. Well stated! No doubt it was a difficult article to write. But thank you for doing so.
ReplyDeleteWe all need faith but there comes a time when reality takes center stage.
I have a dear friend who performs home health care services. She has lost 3 patients. In each case, she would call and tell me that the end was close, and it came. I can only hope that she is around when my time comes so I'm not on life support like this poor woman but can leave this world laughing!
Thank you.
I told my daughter that she has to live with her decision so she can do what she can live with. I also told her that I don't want to live like that.
ReplyDeleteGrumpy,
ReplyDeleteI also worked in Home Care before switching over to Pharmacy and saw a few sad cases. One was an elderly lady that had been bedridden for years. A former nurse told me her bedroom looked like a hospital room, as her daughter (a doctor!) brought in all sorts of equipment to keep her alive even though she was mute & completely immobile. Even with all the fabulous technology at our fingertips, the emotional aspect of letting go is still too much for some people to handle. No flaming from me, just anticipating more eloquent writing (and snark!) from your blog in the near future.
murgatr
Pharm. Tech. RDC '06
"But maybe sending a link to the post to others who DON'T see this side of dying will help more people understand"
ReplyDeleteI have and I will!
I hope when people forawrd this column...they also encourage everyone to read all the comments...so many touching stories of bravery and love...
ReplyDeleteCount me in among those who support your theory about death and preparation for the dying as well as for the family involved. It was a most important post -things that need to be said, discussed and decided upon well before the time is actually close at hand for the patient and the family!
ReplyDeleteWell said! I always say "there comes a time when we should stop interfering and let Nature take over" (but keep the patient comfortable by treating pain etc as best we can). When I realised my mother was terminal, I kept her as far away from (other) doctors as possible, and looked after her myself. I have never had one moment of guilt about the fact that I denied her a few days / weeks of "life"; in fact, I was at total peace with her death, having watched the "slow shut-down" process with relief as the hours went by.
ReplyDeleteAnd I always wonder ...those wo cling to their terminal beloveds...what type of death would they personally prefer??? I bet you - quick, sudden and painless!
dr g- as long as death is an adverse measure of quality or excellence, heart surgeons will cling to every patient with their fingernails to the bitter end
ReplyDeleteHaving faced cancer, that is my biggest fear. I would throttle my family if they ever did this to me. (If I could.)
ReplyDeleteIf you "really" love someone, the best thing you can do is be selfless and let them go as gently as possible. It's a rough enough road.
I've tried to tell people they need to have all their wishes spelled out on paper and signed by them. If you have children, you need to think ahead and designate someone to raise and love your children.
None of the things are pleasant to face, but you must.
You did a great job on that post, Grumpy.
You hit the nail on the head with the post, Dr. Grumpy. Every nurse I know feels the same way. Thank you.
ReplyDeleteI'm an oncology nurse, and I am frequently troubled by the number of patients who haven't had this conversation with their families, don't have a durable medical power of attorney, and don't have a living will.
ReplyDeleteHowever, what troubles me even more is that although the majority of healthcare providers are adamant that they would not want futile care, so very, very few have actually committed their wishes to legal documentation.
There is a wonderful product called "The Five Wishes" that helps people spell out exactly the kind of care (in a variety of circumstances) they would want. My unit is working on providing a copy to every staff member who wants one.
Thank you so much for addressing this issue!
Would you like a negative response?
ReplyDelete=D I'm sure we can find some trolls or something...
Yes, the Five Wishes is a great. Here's a site with information on that. Unfortunately the form part is under construction at this time. Here it tells you a little more about it: http://www.livingwills-freelegal.org/Five-Wishes-Living-Will.html
ReplyDeleteAlso, here is a list of states that use the Five Wishes. http://www.agingwithdignity.org/five-wishes-states.php
ReplyDeleteI'd like to take it a step further and extend this discuss to terminally ill children. Children die. There are very good hospice programs for children (my hospital has an excellent one) so parents and children can choose how they want the death process to be handled. Children can die at home with minimal pain. Every patient should be able to die with dignity, no matter how old.
ReplyDeleteThat was a great post, but I wonder about the times when things aren't quite so black and white. What about when you have a young woman with stage 4 breast cancer, for example, and unlike your patient, she's alert, aware, mobile, etc., but additional treatments will only prolong her life another 6 months, say? Is that worth the expense? Having known women in that position, who just want to have those extra 6 months with their kids, I would say yes, it is. As long as the quality of life is still there.
ReplyDeleteReading about cases like your patient just leave me incensed. I have BC myself, and I'm worried that soon I won't be able to afford my own insurance premiums (I'm self-employed), and a big part of that is because of the millions spent to keep people alive when they shouldn't be. Babies born without a brain? Same thing. yes, it's hard to let go, but it needs to be done.
I know that if I'm ever in a position where I'm going to be enfeebled, comatose, etc., I will make it perfectly clear beforehand that I should NOT be kept alive, just for the sake of having my body around. That's just madness. Thanks for the thought-provoking post, Dr. G.
As someone who is relatively young (33) and diagnosed with a terminal illness, I thoroughly appreciate your post. I have Advanced Directives and Living Wills completed, however my family is in complete denial and accuse me of "rushing the process." I have been told that "doctors could be wrong" and that by doing this (being prepared) that I am being "negative" and "wishing death" upon myself. So my mother will not speak to me about it. At all. As if not talking about it will magically make my illness disappear and me live longer.
ReplyDeleteMy biggest fear is ending up like the woman you wrote about. I have lived most of my life in significant pain - I actually look forward to a day when I will be pain-free. That is how I look at death - a time where there is no longer any pain. I wish my family saw it in the same way. Now, don't get me wrong - I do not want to die at my age - but at the same time I want "quality" of life, not "quantity."
So from someone facing her "checkout time" head-on, I give you a huge thank you for talking about the difficult topic. If I could give you a hug, I would.
Wishing you much peace, Dr. G!
I've read all the comments associated with this original post now and feel a need to pose a question: Do you think any of this has anything to do with how death is portrayed in the media, TV and cinema fils in particular. It only just occurred to me when someone mentioned the "shut down" aspect of death that the majority of people, i.e. those who don't work closely with the whole healthcare scene, often have no idea at all 1) what death under these circumstances really means with the unrealistic procedures and recoveries portrayed and 2) what a good experience a peaceful and painfree death can be.
ReplyDeleteAll in all though - a fantastic thread that needs much more publicity. Thank you - I don't need a neurologist at present but you would make living in the USA worth it if I did!! I will continue reading your blog (backwards) until I've finished. I'm so glad I found it.
You bring up a good point, Eileen. Death and ICU-level care are often portrayed quite inaccurately in the popular media, and so many people base their reality on that.
ReplyDelete