When care equals Torture - page 2
I thought this article did a good job of describing what many of us in healthcare deal with on a regular basis. "At a certain stage of life, aggressive medical treatment can become sanctioned... Read More
Feb 19, '12Quote from MunoRNI am a Hospice nurse and it is really nice to see such an eloquently written opinion that mirrors how I feel. This is why I ro the type of nursing that I do. I'm just not as good at saying it bI thought this article did a good job of describing what many of us in healthcare deal with on a regular basis.
"At a certain stage of life, aggressive medical treatment can become sanctioned torture. "
A similar article by the same author:
Feb 20, '12It is hard to even talk about this since I lost my mother not long ago. Thankfully she was in control of her decisions up until the end. If it had been up to me I might have had hospice a year or two before even, but she had to decide when enough was enough. Truthfully that is how it should be. None of us has the right to decide for another person, yet we are often left in that position. It is a terrible place to be in.
Months before she asked what I thought she should do, and I said maybe Hospice would be good now. She seemed shocked. A woman who had been through major close to death illnesses numerous times in the past few years, and she was a retired nurse. She was shocked. I felt awful. Why can't doctors approach these things with their patients? Why should it have to be family? I felt like I was telling her to just let go and die already. Awful. No one wants to lose their mother. I would have given her a kidney, a lung, anything to keep her. But watching her slowly lose her independence was awful too.
Dad was different, terminal cancer does not give you too many options. When chemo is not working they stop it. You must choose death. It was a hard road but a more natural one since I knew where it led and so did he. He had time to prepare.
Even when we have talks and living wills and MPOA assigned it is not easy. But those last days my mother still had not given up. She was still making plans for when she got better. After so many brushes with death you begin to think you may keep fighting it off until you are "really old". She dies at 72. Would be 73 this week.
We have to be careful not to impose our own values on others. My mother had personal work to do and her life though a struggle was important up until the end. Many people who cared for her probably thought she should have died way before she did, but she hung on for a reason. There were still people who needed her. I do not regret all the hospital stays and rehabs, equipment and work that went into her last few years. It was well worth it. She was important.
Feb 20, '12Both of these are excellent articles. I have shared them on my Facebook page and am looking forward to seeing the reactions of both my nursing and non-nursing friends.
Feb 20, '12Thank you for sharing and reminding us that we all are human beings trying our best we can to assist others in their time of need
Feb 20, '12I have long talks with my mom about this. My grandma is 91 and is a pleasant alzheimer's patient. She is the last of my mom's family. All of her siblings and father is long gone. It breaks my heart for her, but I remind my mom that there are worst things than death. Thankfully she has taken my advise and will let my grandma go when it's her time. We as humans are selfish to a degree. It is hard to let the person who loved and raised you go. I wish we had less choices so this was easier.
Feb 20, '12Quote from nursemarioni think it important to note, that when we speak of allowing loved ones to go, we are referring to either a very advanced age, or very advanced stage of illness.We have to be careful not to impose our own values on others. My mother had personal work to do and her life though a struggle was important up until the end. Many people who cared for her probably thought she should have died way before she did, but she hung on for a reason. There were still people who needed her. I do not regret all the hospital stays and rehabs, equipment and work that went into her last few years. It was well worth it. She was important.
i cannot envision people thinking your mom should have died any earlier than when she was ready for.
and, your mom was still young, in terms of age for dying.
admittedly, i get my shackles up when i see a terminal 93 yo being fully coded.
as a hospice nurse, i've always seen hospice as the "let's wrap this up" chapter(s) of one's life.
for many, there is still lots to do, and often, is a predictor of how much longer one will/can live.
i guess i am not understanding why "regrets" of yours, would even be a consideration.
again, she was young and all hospitalizations would seem appropriate...
especially in light of it all being her wishes.
i'm sorry if the following is a repeat:
but when i was in nursing school, towards the end, we had to shadow a nurse in the specialty we believed we wanted to work in.
i shadowed a hospice nurse for a day.
at ea and every visit, this nurse would purposely...willfully...use the word "die" or "dying" in reference to her pts.
"since you are dying, i agree you should..."
"don't worry, you'll die ok."
"you're dying - go for it."
now i know there are people who endorse such bluntness...
that we shouldn't tippy toe around the usage of this word.
personally, i winced.
and it was that day of shadowing her, where i promised myself that i would exercise more sensitivity in my interactions with dying pts.
don't misunderstand me - i have consciously used these words (die, dying) to those family members who were in total denial.
it was important that my terms were concrete and absolute.
but my poc always reflected where my pts were, in their journey towards death.
i guess my point is, there is lots of work in dying.
it is soooo not about being a passive consumer...
many pts make goals/wishlists, and set out to do them.
others just want to snow themselves until they die.
but if one is cognizant and receptive, yes - lots of work to be done (generally speaking).
and it sounds like your mom, marion, was cognizant, receptive, and proactive in how she lived...and died.
please, and i may be jumping the gun...
but no regrets.
of course your mom was "important".
i am sorry for your loss, and hope you are healing.
Feb 20, '12Very kind of you. I just hate it when I hear nurses say things like "It would be a blessing if he would just die". Things like that. It is never a blessing to die and letting go of a loved one is exquisitely painful. I am sure nurses thought that about my mother in her darkest hours.
In hospice you learn a lot about family dynamics. You get to see how a person lives and who they are. That is a special gift. I was a hospice nurse myself for three years. And I never saw any patient who was ready to die or anxious to die. I never heard another hospice nurse say that someone needs to just die. Hospice in the right spirit values life, making time count. I mentioned death and dying to my patients when I was in hospice nursing but mostly we talked about life. How to enjoy best the time that is left. Death always comes in time whether you focus on it or not.
I do agree that there are times, and I have seen them, when a person has outlived everyone and has no one, no independent functions, no higher thought process left. Tubes, decubiti, immobility, pain. This becomes their life. Those times I wonder why, but it is not my place to decide, so I try to keep them as comfortable as I can and put it in God's hands.
Feb 20, '12
this is a sad state of our society in so many case we only prolong life as the quality is diminished. over the years of my career i have seen people’s life being over extended to point where the life before you is just a hollow shell of life. i truly believe quality of life more is important life itself. life is meant to be experienced and not to simply to exist.
over the weekend i cared for an elderly woman who was admitted for an infective decubitus ulcer onher coccyx it was the size of a hand. she also had may other bed sores. on topof that she had other medical problems, she was demented, almost completely death,blind. every time i had to move her was met with a fight, i can’t imagine the fear and pain she must be going through. just having to change her foley catheter took three people two hold her down and on to place it in, the alternative was to leave it out and have the urine soak the wound making a bad situation worse if that was possible. i had a change her dressing and for the first time in my life i contemplated passing out form the sight and smell; this brown puss pooling and hanging rotten flash in the wound. i could not help to ponder how many people it was going to take to hold this patient down for the picc line for the day. the plan of care was to debrisher wounds and gives antibiotics. if this patient did not have any other major problems healing and recovery would take a better part of a year. i doubt she will make it a month, but yet we aredoing everything we can for her, every hour spent in pain,confusion and torcher. so iam conflicted in what is being accomplished for this patient and the morality in prolonging this life. i have written about life, death and what is right before, but it never hits home more when you see it up close and the smell of all of it permeates your .
Last edit by jbluehorseh on Feb 20, '12 : Reason: spelling
Feb 20, '12I've had patients mouthing "Please let me go" around their vent tubes -- folks who weren't in restraints anymore because they were so weak they couldn't possibly pull out their lines. While the family was too "upset" to see what their family member was having to live through to come visit, but wouldn't let us put them on hospice. Pt was on a vent for almost 3 months before they died of sepsis, kidney failure, heart failure, and inability to take any more chemo. And we coded them.
I've seen a PEG tube put into a 104 year old dementia pt who was fetally contracted -- because of the leeches living in her house, who wanted that monthly check to keep coming, and the doc said they could probably get another 6 checks -- er, months -- out of her. Died of aspiration. I can still hear the bones snapping as we tried to get her body flat enough to do compressions on.
I've seen people with gangrene, decubes the size of dinner plates, people with an EF of 15%, all while the family demands we do everything -- while they were arguing over who was going to get the car, who was going to get the truck, and who was going to get the house, an who was going to "stay with maw maw" because they weren't going to have the nursing home "get everything." And you betcha, we had adult protective services called on that one. And because of their last name, nobody did anything, and back home she went. I hope not a blade of grass ever grows on that farm from now to the end of time.
I have sat in my car after work and cried, praying, "God forgive me for what they're making me do."
We have the capacity to keep a body alive, but not the capacity to keep a person "living."
Feb 20, '12Quote from nursemarionI am so sorry for your loss . I lost my Dad a couple of years ago... missing them never goes away but it does get hurt less eventually.....I promise.
Very kind of you. I just hate it when I hear nurses say things like "It would be a blessing if he would just die". Things like that. It is never a blessing to die and letting go of a loved one is exquisitely painful. I am sure nurses thought that about my mother in her darkest hours.
I do agree that there are times, and I have seen them, when a person has outlived everyone and has no one, no independent functions, no higher thought process left. Tubes, decubitus, immobility, pain. This becomes their life. Those times I wonder why, but it is not my place to decide, so I try to keep them as comfortable as I can and put it in God's hands.
I think every ICU nurse knows of these patients that the family refused to acknowledge the inevitability of the situation. Tubes shoved in every orifice and a few man made ones as well. Generalized anasarca, sclera so edematous that their eye lids cannot close. The family demanding that their loved one be saved. I have wondered at times if they really LOVED this person so much that it's too painful to let them go or they were intending to torture them to pay them back for a terrible childhood. I remember when my father coded as I slept at his bedside beginning God to let him live yet praying to not let him suffer all those horrible things that we as medical people can inflict. Dad did survive the code but did not return to us, so we removed him from life support. (miss you dad)
I have had to remove a child from life support after fighting like a mad woman to save her and place her in her mother's arms to "officially" die.(thinking of you angel) I have gone into harvesting with a patient because I told his family in Mexico he would not be left alone. I have been angry that the child is dying and the 90 year old survived the code. I have seen an Oncologist stand at the bedside of a patient in Status Epilepticus with an inoperable grade 4 astrocytoma and wonder why the patient is seizing.....being sure it was hypoxia. I have seen a surgeon take a 90 year old into open heart just for the fee.
I agree with Leslie. I think as a society, with all these medical advances, we have been made to believe that death isn't a part of life anymore. That there are times that letting go is the best thing to do. Quantity is not quality. We are more humane to our pets as we love them too much to let them suffer, and we put them to "sleep" to place them out of their misery. At times I have felt we are better to animals than we are to other humans.
I think that in some ways we have gotten better at letting patients die with dignity and then other times I really miss those "slow codes" when we just went in and shut the door.......for even in doing that we did what was best for the patient and didn't have to force the family to agonize over a DNR and "letting them die".
In my state the do have what is called a "comfort care order" which allows EMS to acknowlege a DNR.....and it works well when it is used by the MD's. http://www.mass.gov/eohhs/provider/g.../comfort-care/Last edit by Esme12 on Feb 20, '12
Feb 20, '12withouthealth life is not life; it is only a state of languor and suffering - an imageof death.
Mar 6, '12If I get permission, I can view my own records. I wonder if I could make a nursing note about my sincere wish to never suffer CPR, Intubation or PEG treatments? I would be writing a note as both an RN and the patient. Or, should that be a new thread?