home
RSS
Families haunted by end-of-life decisions
March 2nd, 2011
03:51 PM ET

Families haunted by end-of-life decisions

The burden of making medical decisions for a loved one can cause distress and even post-traumatic stress disorder, according to a report published in the Annals of Internal Medicine.

When a patient is physically or mentally unable to make medical choices, his or her fate falls into the hands of others, usually family members or friends.  They ultimately choose whether to start dialysis, have a risky surgery or put a person on life support.

The prevailing logic is that family members know the patient best and can make the most appropriate medical decisions.

“We’ve been relying on surrogates,” said author David Wendler, who heads the Unit on Vulnerable Populations at the National Institutes of Health’s Department of Bioethics.  “We think how else are we going to do this when people can’t do it for themselves?  It turns out the number of patients who can’t make decisions are particularly high. Especially in the end of life when 50% of the patients can’t make those decisions.”

That leaves the family with heavy responsibilities.  In research interviews, family members agonized over the dilemma.  This decision haunted them months and even years later.

“They feel like they’re being asked to be the agent of the demise of someone they really care about,” Wendler said.  “Not surprisingly, that’s really stressful and hard.”

One respondent said: “I don’t want to kill. That’s the part that I agonized over a lot.”

Family members felt they let their loved ones die by removing life support.  Those who left patients on life support felt responsible for prolonging their suffering.

“In the paper, people said things like, ‘I wouldn’t wish being a surrogate on my worst enemy,’ and ‘I felt like I was the jury to sentence to death the person I loved most in the world.’ You read that, you can see how traumatic it was for them,” Wendler said.

After examining  40 studies, Wendler estimated that the about a third experienced substantial distress, another third felt moderate distress and less than 10% had a positive experience.  Because the various studies used different measures, it’s hard to give precise estimates, he said.

The people who did not feel scarred by the experience, usually expressed confidence that they knew what the patient would’ve wanted.

One respondent reported: “Thank God Mom and Dad had a living will made. I’m glad I was not the person who had to make that decision.”

Another said, “That’s why I basically have no regrets. I was carrying out her wishes.”

Without prior conversations or an advance directive, families may have a false confidence. A different study found that surrogates correctly predicted the patient’s preferences in only two-thirds of the cases.

Having an advance directive that specified the patient's treatment preferences significantly reduced family stress, the report found.


soundoff (68 Responses)
  1. Steph

    So very true!! I was only 29 and my mother was only 54. She had had a cerebreal aneurism bleed and went into a coma. Her doctor told me that I had to take her off Life support. That he didn't believe she would come back. And the insurance would not continue to pay for any treatment if I didn't follow his advice. I am an only child and my father is gone. I never felt so torn up in my life. I did not want to be the person to actually authorize my mother's death. It is a decision that has eaten away at me for years. And it is the primary reason I have a living will and have designated a friend (not a relative) as my POA.

    March 2, 2011 at 16:29 | Report abuse | Reply
    • Jen

      I'm 42 and I not only have a living will, I carry a copy in my wallet at all times. There's a sticker on the back of my driver's license telling people where in my wallet to find it. I've added handwritten notations, with initials and dates. I also have designated two people, my partner and a backup, to make decisions for me.

      March 2, 2011 at 22:50 | Report abuse |
    • JENNY H

      God bless you, Steph, for having the courage to make the right decision for your mom, especially she was the only parent you had left. My mom also was taken off the respirator after she suffered a stroke and did not recover. Please don't ever second guess yourself and may you always have peace in your heart and your mind.

      March 3, 2011 at 00:31 | Report abuse |
    • LEB

      You weren't responsible in any way for her death, not even by "authorizing" it. Her body was already dying, you just consented to let nature take its course rather than prolong it by artificial means. I can only imagine how difficult it must have been to lose both parents while still so young. I'm sure you would understand if your children were faced with making the same decision for you, and that you would want them to continue with only fond memories in their hearts, not an undue burden of guilt over what was the only real choice.

      March 3, 2011 at 01:35 | Report abuse |
    • SMH

      As an ER doctor I saw a lot of death and dying. Ultimately , medicine is about making people comfortable and avoid infliction of distress.Your day to die is your day to die.I am not a savior nor a killer merely someone who makes people feel better. People have been taken off life support and still lived.....it was not their time.No one of flesh and blood lives forever and sooner or later everyone dies. Seek advice from rational intellectual who face death frequently and do not have your judgment clouded by emotion. Ask your doctor what he would do if it was their family member and follow your doctors advice. Your physician knows the most and can make a rational advice. Seek wise medical counsel and follow it.Then live every day to fullest because life is short.

      December 17, 2013 at 23:06 | Report abuse |
    • Tedd

      These are by far the most considerate, thoughtful and loving posts I have read on any thread. We all know death is a part of this life, and we must first accept this aspect of life. I believe if I had to make a life and death choice for a love one, I believe/hope my conscience is at peace after the decision. Steph, If anyone trust you enough to make such a decision on their behalf, then they must know you will only render a decision that is according to their will, and in their best interest. Steph, may God a bless you, and give you peace

      December 18, 2013 at 01:33 | Report abuse |
  2. susan

    Yes, I echo that. I was 26 when the doctors gathered us together to ask us if we wanted to try to keep my father alive or let him go. My mother and brothers all looked at me (the eldest) to make the decision. It was agonizing. I have had nightmares about it for the 25 years since then, and episodes of depression. Even with therapy, it is still one of the most painful things I have had to do, fraught with doubt. I wish a clear cut death on people, with no lingering or decisions to make for their loved ones.

    March 2, 2011 at 17:26 | Report abuse | Reply
  3. derakh

    This is exactly why, even at 27, I have told my husband exactly what I want should something like this happen to me. And he has done the same. I learned from first hand experience when my father fell ill and died suddenly. My mother had no idea what he wanted for his memorial and she was too much of a wreck to even make a cohesive decision. It fell to me, the eldest child, to plan my father's memorial and his funeral. He was the most special person in my life and I am still shaken and was basically destroyed for years afterward. Thankfully I did not have to make the life support decision. I can't even imagine.

    Advice:
    Don't ignore it. My parents never discussed what they wanted done should something terrible happen and when the time came, my mother was unable to make any decisions. Discuss this with your partner NOW. So heaven forbid something happens, your loved ones know exactly what to do and they will have no doubts they are doing the right thing. We all owe it to our loved ones to not leave them holding the bag and the guilt/depression when something happens.

    March 2, 2011 at 18:16 | Report abuse | Reply
    • Katiyana

      Don't just talk about it, put it in writing, what if there was an accident and your partner who was the only one you told died and you were injured and no one else knew your wishes. Always put it in writing and let those who would be primary contacts know where the information can be found,

      December 23, 2013 at 21:00 | Report abuse |
  4. The_Mick

    I've made it clear to my family that I don't want my life extended if I'm a near-vegetable or in constant suffering if it costs my estate money – let my inheritors invest it wisely or blow it on things I'd never spend it on: at least they're having fun.

    Also, I agree with the Klingons in Star Trek who have no regard for the dead body because "It is nothing more than an empty shell." So they can cremate me or grind me up into Soylent Green, just don't waste valuable land space on a grave on my remains.

    March 2, 2011 at 18:46 | Report abuse | Reply
    • wijic8

      Wow! My thoughts exactly! I want my family to remember me after I'm dead, but whenever I drive by a large cemetery, I just can't help thinking about all that nice land being wasted on graves that no one visits or thinks of after a generation.

      March 2, 2011 at 21:08 | Report abuse |
  5. james

    i have made it clear to my family what i want and i have a living will and all my attorny says i need in this state. i felt that leaving it up to my family would be too much so i named my best friend to see that my wishes are fulfilled and i agree with The-Mick in not taking up land to bury me just cremate me and save the space!

    March 2, 2011 at 19:46 | Report abuse | Reply
  6. Good Patient

    Even a living will is not enough. Spell out the specifics in detail or your wishes can be ignored by a doctor who refuses to acknowledge that you're "terminally ill."

    March 2, 2011 at 20:06 | Report abuse | Reply
    • Ben Shore

      You make a good point. In creating a authoritative living will, one needs to be absolutely specific and spell out desires for contingencies.

      Ben
      http://www.LongevityDrugstore.com

      March 3, 2011 at 10:21 | Report abuse |
  7. Carole

    My grandmother planned her funeral the day her husband died of a heart attack. He was 58. She wrote everything down on a piece of paper and taped it to the wall in her kitchen so everybody could see it. When she fell and broke her wrist she moved in with my mother. The paper went with her. Taped to the wall in my mother's kitchen. Grandma died of a massive stroke. Every wish was carried out except for the preacher. The preacher she wanted had the flu and was unable to attend. Everything else went like clockwork. Don't delay. Get everything in writing. Give it to every member of the family and close friends. It will save you and yours a great deal of trauma.

    March 2, 2011 at 20:24 | Report abuse | Reply
  8. zapper45701

    Been there, done that. I'm 56, it's all in writing. The kids have been "talked" to. My directions are clear. It's very easy to do. I'm in no hurry, I hope for another 56; but if I kick tomorrow, so be it. This also includes all the "what if" scenarios, too–like incapacitating strokes, organ failure, etc.,–(at least all I can think of, but I think enough of those bases have been covered, that if something really odd would happen, they would know what to do.) The best thing? I've done the hardest thing anyone can do–plan my death and post-death wishes. It's all cake from here on out. I need not worry one iota about putting anything on the family. I'm taken care of and so are all of the decisions. Don't hesitate! It's a very enlightening experience.

    March 2, 2011 at 21:01 | Report abuse | Reply
  9. Molly

    My mom died when I was 36. (my dad died when we were small), and in her family, no one really talked about their last wishes. I don't know if its a cultural thing–my parents are irish, and no one really wanted to talk about a will, funeral plot or anything- thinking it brought bad luck. When my dad died, and my mother was left with 4 small kids, she became a realist. She went out and got a will, and figured out who to leave us with if she passed away. Her health wasn't the best, and it declined as we grew up. After my youngest brother finished college, she went out and got a healthcare proxy, living will, and estate plan. She talked to us about her final wishes, and what she wanted us to do. . My brothers were uncomfortable, and one wanted no part of it, but I listened, and ended up taking care of her for the last few years of her life. I will be forever grateful to her for being VERY clear on what her last wishes were. I was her healthcare proxy, and during the last year or so of her life, whenever she talked about dying, I would ask her to reiterate what she wanted...just to make sure nothing changed. She died in the hospital. When her doctor told me she didn't have much time left, and to get my brother on a plane home, I told my aunts and uncles. They were in complete denial, and if it wasn't for my mom explicitly telling me what she wanted, and her doctor being so supportive, and running out of the OR to have a family meeting with us,so my aunts and uncles could hear and understand what he told me, I would have had a breakdown and suffered from PTSD for the rest of my life. It's tough enough losing a loved one, but having to second-guess a decision is terrible. Our family was incredibly lucky–my mom had a wonderful doctor who went out of his way to help us deal with my mother's impending death, and I will be forever grateful to my mom for telling us what she wanted.
    All i can say is figure out what you want, and let your family know. Even if they laugh it off, insist on talking about it. Trust me, you'll save your surviving family thousands in therapy bills!

    March 2, 2011 at 21:04 | Report abuse | Reply
  10. Susan

    When my husband and I were in our 30s he had cancer and ended up in the hospital with an antibiotic resistant infection. The infection was causing his organs to shut down and he was at the point of no recovery (among other things kidney shut down, causing fluid retention, causing cranial pressure & bleeds). I made the decision to stop the life support. We had discussed this possibility many times during the 2 years he was in treatment and I knew what he wanted. Those discussions and the last words he ever said to me "I love you and I trust you" gave me the strength to what needed to be done. I've made sure that my family and friends know how I stand on this and hope they can carry out my wishes.

    March 2, 2011 at 21:18 | Report abuse | Reply
  11. syntk

    Thank you. This is the only time I have seen all the comments make sense on a CNN article. Thank you for your bravery and your honesty. I am going to finalize my living will and medical instructions this week!

    March 2, 2011 at 21:53 | Report abuse | Reply
    • iminim

      I agree. Thank you for your response as well

      March 2, 2011 at 22:31 | Report abuse |
    • madisoncnn

      Thank you commenters for sharing your personal experience. Your comments have been insightful and very thought-provoking.

      March 3, 2011 at 08:59 | Report abuse |
  12. betty

    twice I have had to make the end of life decision. once with my 90 year old dad with Kidney failure and once with my 65 year old sister with previously undiagnosed lupus. they both had living wills and health care directive. but even the detailed health care directive and extensive conversations with both of them didn't prepare me for this. Health care directives look good on paper but when it's actually happening to you there are so many shades of GRAY. With my Dad, thank goodness I had my family with me. even though i had POA, I still made it a family decision. and even though I knew it was the right thing to do, I still felt like I was killing him. with my sister, it was so much harder. the doctors were wonderful though, giving me all the options, and even letting me put my cell phone on speaker so my family could hear. but still I still have episodes of depression related to my sister end of life. I don't wish this on anyone, no matter how well you think you are prepared and no matter how well done the health care directive is.

    March 2, 2011 at 22:19 | Report abuse | Reply
  13. Kris

    I have told my family clearly....When the body is no longer a comfortable home for my soul, let me go. At that point, when all that made me a person is gone, the body is no more meaningful than a prom dress or my wedding dress, and whatever is the least expensive means of disposal, which I assume will be cremation, should be followed...although if they want to go to Hawaii and sprinkle the ashes there, while having a wonderful party and knowing how much I love the Kona coast, they should go for it. Do not bury me in an expensive casket, do not bring me plastic flowers...because that shell is no longer a home to who I was. General and durable power of attorney, estate plan, and living will are all complete. Mourn, and miss me...mourn when you hear my favorite song, or if I am not there when my grandchildren cross milestones in their lives..find me in the quiet of the woods that I loved...and then go out and live what is left of each of your lives to the fullest, filling your lives with laughter, love, and caring. I love life and want to embrace it to the fullest, honor me by living out your lives with that philosophy.

    March 2, 2011 at 22:20 | Report abuse | Reply
    • David Mattheus

      Kris, You said it best! You made my day. Thanks so much for your words.

      March 3, 2011 at 11:14 | Report abuse |
    • CincyCat

      Kris,

      Your words touched my heart. When I read your beautiful words, "When the body is no longer a comfortable home for my soul, let me go." I immediately knew this is what I want also, and I can't think of a better way to put it.

      Thank you so much for sharing this...

      March 4, 2011 at 18:12 | Report abuse |
    • NUCLEARMIND

      Your words are beyond beautiful. I do believe Desiderata has a companion,finally. Who are you really? The reincarnation of Frost and Whitman? Thank you.

      December 23, 2013 at 19:12 | Report abuse |
  14. Julie

    The comments people have left here are as good as the article and my heart goes out to you all.
    Though I've never had to make the life and death decision for one of my own loved ones, part of my job has been to counsel in the hospital setting with those who do. It inspired me to bring up the topic with my own family , we all now have the necessary advance directives or at least know each others feelings about what they would want done in the event of their incapacity.
    Cultural, religious, personal and financial issues all may come into play, it's important for us all to understand that making advance directives is a very loving thing to do for those we care about.
    Just to throw out another idea that has often crossed my mind as I sat with agonized family members – maybe there are sometimes when this decision shouldn't be made by family. Maybe there are times when, in the absence of advance directives, the decision should be made on the basis of the patients condition. Those of us healthcare professionals who encounter these situations aren't happy about the idea of being the ones to make these decision for patients and families, but maybe in some cases it's better we be the bad guys, or bear the weight instead of putting already distraught families through this additional trauma.
    God give us all strength and wisdom in dealing with these things.

    March 2, 2011 at 22:22 | Report abuse | Reply
  15. Ruth

    Sometimes, in depth and uncomfortable discussions are necessary. We lost my dad to cancer in August and his advanced directive said no extraordinary means should be used to keep him alive. He had also reached a point when he was asking his doctors to just end things. I interpreted this to mean no more antibiotics, etc. Fortunately, he was alert enough for me to ask if this was what he truly wanted – and it turned out that he did not see antibiotics, IV feeding, etc. as something that he did not want. Several conversations over the course of a few weeks (the last with his physician present) indicated that so long as he could still find enjoyjment in life (a visit with a family member or friend that made him smile) he wanted to keep living – and he wanted all but paliative care to end, only when he no longer found enjoyment in life. Fortunately for the family, he passed within 24 hours of that point in his life. Had we not had those conversations, we may have made wrong decisions during the last 10 weeks of his life. I encourage all people to have these difficult (and detailed) conversations with their loved ones – I am glad that I had this with my father – it allows me to have no regrets over the end of life decisions that we made (also allowed us to really let the doctor know what he desired). I atteneded an appointment with his doctor a month before we lost him, and his doctor put orders in his file (he was in a nursing home at this time) that kept him out of the hospital, but also kept him comfortable, the last 5 weeks of his life.

    March 2, 2011 at 23:52 | Report abuse | Reply
  16. Loving Son

    My mother passed last week after a 4 year battle with multiple myeloma. Although there was much we could have done to prolong her life, she said she wanted nothing more done, and wanted nature to take its course So last Monday we were talking about my son's basketball game via cell and then just two nights later she suddenly slipped away. There was no fear in her voice, just love for her family, in that last phone call. She was only 71, but I'm so glad I have the memories of her alive instead of seeing her suffer just to stay alive a bit more in pain. She will serve once again serve as my inspiration as I plan how to make things easier for my kids. Thank you Mom, I love and miss you....

    March 3, 2011 at 00:16 | Report abuse | Reply
  17. LEB

    My dad just turned 70, and has made his end-of-life desires abundantly clear to me (plus he's had a living will for many years). When it's my dad's time to go, I'm not going to let doctors waste hundreds of thousands of dollars on heroic life-saving procedures that they know have little chance of working, and at best might buy my dad a few weeks of a sub-standard existence. My dad wants to die with dignity... quietly, and hopefully with no pain. I will be able to honor my father's wishes without questioning whether or not I made the right decision, because I would want the same wishes honored for me.

    March 3, 2011 at 01:28 | Report abuse | Reply
  18. Frank

    My Mom was 82 years of age and had advanced Parkinson's Disease and Alzheimer's Disease. As the sole surviving son, I had the durable power of attorney to handle her business affairs, the medical power of attorney, and the living will. For the last year of her life, Mom was residing in a Memory Care Center. However, in order to keep her their, I had to hire independent sitters to stay with her 24 hours a day, 7 days a week. Mom did not even remember or say my name or my wife's name. She did not remember her grandchildren any older then 14, 10, 6. Even though they are all grown and have families of their own. After one depressing visit, I put a DNR (do not resuscitate order) in on Mom. It was a hard thing to do but I did not want her to be in pain, more confused and on a ventilator. Six months after placing the DNR, I was called from the nursing home that Mom was having chest pains and was enroute to the hospital via ambulance. By the time I got to the hospital, she was dead. I never had a chance to say good bye. My wife and I had visited her the day before and she was remarkably alert – -the best in months. My brain tells me I did the right thing; but, my heart tells me I did the wrong thing. It has been six months since Mom's death; but, I still question if I did the right think and if I could have and should have done more for Mom. I will have to live with my decision forever. My only comment is that you do the best you can and make the best decisions that you can. EAch case is different and the person with the responsibility has to make the call as they see and feel it. No one should be allowed to second guess someone who is struggling with a life or death decision.

    March 3, 2011 at 02:12 | Report abuse | Reply
    • Laura

      Your comment touched me the most. You sounded very matter-of-fact and confident in your decisions until you actually lost your Mom. I just wanted to tell you that no matter what decision we make, when the person passes they get to go home. You should try and be at peace because your Mom knows that you did your best and she knows that you loved her very much. It's not the end that matters but the moments we share while we're living. Not just the heart wrenching last few years but our entire lives. I can tell you were an amazing, loving son and you deserve to live your life happy and at peace. Please try your hardest to do that. When you do, your Mom will truly rest in peace. May God bless you. 🙂

      December 23, 2013 at 18:47 | Report abuse |
    • NUCLEARMIND

      I read Laura's first sentence and I tried to agree, but I realized that each and every story of this very blessed thread is so filled with the humanity that we speak of when we refer to what it is that makes the human spirit holy. But, by the time I read to the end of Laura's love note to you and the universe, I couldn't stop the tears. Isn't It wonderfully strange, that there is obviously magic afoot in this room, and that proves our loved ones are here with us. They never did leave, as if that was even possible.

      December 23, 2013 at 19:25 | Report abuse |
    • Jackie

      Frank, I can relate to your post. I understand how torn you feel. I'm glad for the many who post here who are at peace with their decision. But I personally am not, I feel like I had to choose between horrible option or two. It will be going on 8 years, and I still have times where I hope and pray I did not make a mistake by having my Mom taken off life support.
      She had a living will that authorized being taken off life support if there was no hope, but I also heard her say that she would want to live even if her life would not be the same.
      She was 73, very active & healthy, my father's caregiver. She had a cerebral aneurysm that burst, and never regained consciousness. Even though the doctors told me they did not think she could have any sort of meaningful recovery, how can I know for certain it couldn't happen? I am a nurse who worked with neurological patients, and unfortunately for my peace of mind I have talked to several who tell me they were basically written off by their doctors, spent months comatose in an extended care facility, and then finally started to come around.
      I was so afraid she was suffering horrifically, and then I was also afraid she was in there and desperately trying to show she heard the commands, but could not manage to follow them. To this day I agonize over whether I made the right choice in allowing her to come off life support. Could she have recovered some function eventually, was she permanently comatose and I would just prolong her suffering, or worse yet was she there, aware and locked in / unable to move or do anything to show her awareness. I finally decided that if I were in her condition, I would not want to live.
      They promised she would not suffer, and to me it looked like she suffered greatly in the minutes after they extubated her. I feel like I let her down, that I should have fought to give her more time. I doubt she would have made it out of the ICU given how unstable she was cardiac wise, but (and this is probably selfish) I would feel more like she had chosen her time to go if it had just happened and not been me allowing the staff to give up on her. I can't get over the feeling that she never would have given up on me, and that I made a huge mistake.
      I can't be the only who still agonizes over their decision. I made the decision to allow her to come off life support with all the love in my heart possible for someone, but it's hard. I will never know for sure that giving her more time wouldn't have allowed her to recover enough to want to live.

      August 9, 2016 at 04:05 | Report abuse |
  19. laika72

    I join the chorus, this was a really hard thing to do. After my mother passed, my wife and I made living wills and discussed DNR wishes. This is an end of life talk all families should have. We all pass on, we should feel more comfortable with discussing our passing with loved ones. We are too afraid of the discussion of death in this society. I never want to get that call again.

    March 3, 2011 at 03:41 | Report abuse | Reply
  20. Tcat

    I know an old marine who was a world war 2 vet. When he went into cardiac arrest some paramedics brought him back and he cussed em out for it. Said he didn't see the point in resuscitating an 8- year old man and that he just wanted to take whatever was coming. Makes sense if you think about it, what is the use of prolonging your life if you have outlived all your loved ones and are to old to do the things you enjoy. Though I can also see the difficulty in your loved ones having to make that choice.

    March 3, 2011 at 04:55 | Report abuse | Reply
  21. who decides

    My mom did not have anything written down. We had discussed end of life but I never got an answer. She got very ill, had a stroke and her heart stopped, they brought her back but she died shortly after. The doctors never told us how ill she was for 2 weeks.
    My question is, why did they never ask us?
    Do the doctors make the descion if nothing is written down?

    March 3, 2011 at 07:16 | Report abuse | Reply
    • gotta

      If the patient has NOT made their wishes known to their family or their doctor, the doctor will resuscitate the patient regardless the age. That is why EVERYONE must make their wishes known to everyone in their lives.....otherwise the resuscitation will proceed full blast and thousands and thousands of dollars will be wasted trying to revive patients whose lives have come to a natural conclusion. We are sooooo afraid of accepting the circle of life........

      March 4, 2011 at 20:52 | Report abuse |
  22. Scott's Sister

    My brother was 21. His son was born the day before his horrible accident. His wife was still in the hospital with the baby. I was the next of kin. His last words, according to the paramedic, were, "Dear God Please, I don't want to die right now." i saw him at the hospital and waited for the doctor to come to me. He told me my brother had no brain activity and said I should disconnect life support. Just the day before he was so happy and full of life. My mother was driving in from another state and I was trying to reach my father in another country. I was only 22 years old and I was overwhelmed. Cells phones didn't exist at that time. The doctor asked me how I wanted my mother to see her son......connected to all of those machines or peaceful in a bed. I have NEVER felt such anguish, grief and guilt. I allowed them to disconnect life support. When they dropped his cold wedding band into my hand, I slid down the wall and sobbed. I was just a baby having to make one of the hardest decisions ever faced. I shared my entire life with my brother. I was clinically depressed for over 5 years after his death. I adopted his son when he was 16 and I am reminded of my decision everyday when I see my brother in my son. I wonder what kind of man he would have been, how different would my son be if he had his father in his life, does my brother hate me for the decision I made, did I do the right thing. I'm 54 years old now and it hasn't gotten any easier.

    March 3, 2011 at 08:18 | Report abuse | Reply
  23. maria

    It is always a hard decision to take someone u love off of life support. My father suffered from stage 4 rectal cancer and was undergoing treatment. He wrote up a DNR when he went into the hopital for sugery. We spoke about what he wanted in detail-this decsion had to finally be made several months later when he went into septic shock-at 3:00 in the morning my mom had me talk to the doctor and the doctor told me the situation. My mother asked me' what did your dad want??" I told her that dad would not want to live like this-Basically I had to make the final decision. Do i regret this decsion-I have to say No-I knew it was what my dad wanted. Am I hurt? Yes, I am-I miss him and at times remember I made this decision. I do not feel confidence in my decision–I feel like I did what my dad wanted but I will always think about it forver! It will be a year 03/05 since my dad passed and a year later I miss him and sometimes think about the decision I did make.

    March 3, 2011 at 12:59 | Report abuse | Reply
  24. maria

    I did not mention my dad was a month away from turning 60 years old....

    March 3, 2011 at 13:01 | Report abuse | Reply
  25. Rays sister

    my brother was in car wreak when he was 21and I was 24 was told by dr I would have to make the desion to take him off life support if was brain dead my mom and dad was there but was not in able to make the desion thank God he was not brain dead my brother was into drugs in pain all the time from car wreak at 42 he od and was put on life support this time was brain dead and was taking off life support after 20 days I was with him when he die he also had a5 year girl [see my brother in her she is the best part of him I made my desion out of love and so did you it was not easy was very hard my brother was dead before he was taken off and so was Scott please stop second guessing the hard desion you had made you love your brother and you are there for his son you have the best part of him with you you are a good person that made a desion out of love and you got to teach his son about him you are blessed to be there for his son

    March 3, 2011 at 20:30 | Report abuse | Reply
    • NUCLEARMIND

      This post of yours is truly a masterpiece of the human heart.Thank you so much.

      December 23, 2013 at 18:51 | Report abuse |
  26. Justina

    People don't know what's best for themselves or what lies ahead in the lived life's future. Basically we must do our best to live and let live. In the honest attempt of surviving and rescuing life, God helps us.

    March 3, 2011 at 23:09 | Report abuse | Reply
  27. Sue

    We had to make this decision for my mother one month ago today. She was 58 with severe pneumonia and complications that could not be overcome. She had been on life support for a month before we disconnected it.. I have had nightmares ever since. Just last night, I finally had a happy dream with her talking to me. In this dream, I hugged her and asked her if we did the right thing letting her go but I didn't get an answer. Did we?

    March 4, 2011 at 19:08 | Report abuse | Reply
    • teresa, ohio

      Sue, sorry for the recent loss of your mother. I would say for the next YEAR: do not torture yourself with thoughts of IF you did the right thing or not. You are in mourning. You have had the most devastating loss that one can have, besides a child. Your mom was on life support for a Month: that is a good long time. If the doctors felt she was making no move toward any recovery, you guys gave Mom a good long time to try to spring back. Here is a little exercise to do for yourself: how would you want your family to decide if that had been you in the bed? Would you want them to be heartsick over their decision? your answer is probably: No, let me go.

      I PRAY that you do not TORTURE yourself so much in the coming days. I do NOT believe for one SECOND, that the result of ending anyones life via way of pulling the plug is OUR DECISION. God decides. Again, I am so sorry for your loss. Mom's are a hard one as they are Our Rock and Anchor to this world.

      March 5, 2011 at 12:59 | Report abuse |
    • msyellarose

      My condolences on the loss of your mother. Please don't feel guilty, which is reason you had this anxiety produced dream. If your mother came to you in your dream appearing happy, not suffering, and reaching for a hug, you did the right thing.

      March 8, 2011 at 13:30 | Report abuse |
    • NUCLEARMIND

      Yes-I say-I don't know why -I know the answer is yes though-in the years to come-the days to come-no,why not now?-live your life as your mother would wish you too – you and she and all your loved ones from here into eternity shall never die but only live forever and ever in joy.I don't know why-but I know that is the truth.Huggie to you. 🙂

      December 23, 2013 at 18:58 | Report abuse |
  28. Dr Bill Toth

    Having these types of discussions while people are at a family event, alive and well...may be a wee bit "awkward" or "uncomfortable" and utimately result in way less stress when the "end-of-life" events occur. Live with Intention, DrBillToth.com/blog

    March 5, 2011 at 08:55 | Report abuse | Reply
  29. teresa, ohio

    All thru my growing up years, I remember BOTH of my parents saying they dont want hooked up to no damn machine. At 21– me , my 8 siblings and mom had to decide to "pull the plug" on dad, whom we were told had no brain activity for probably the last week. I was amazed that so many siblings said they NEVER heard dad say he didnt want a machine. Then after it was all said and done, MOM told me she didnt remember dad saying that.... gulp ! Dad died w/in a few minutes of being unplugged, so I knew it had been the right decision.

    It can be a brutal decision to make but in all actuality: we dont make the life and death decision. Once the machine gets turned off, GOD/ the powers that BE makes that decision. And truly, how many of us want to stay alive that way?
    I, for one, do NOT. My kids know how many days they can keep me hooked up, when to pull the plug, and to cremate me. The worst thing for me would be my kids to go BROKE trying to keep a dead body breathing.

    March 5, 2011 at 12:43 | Report abuse | Reply
  30. John Carney

    This is an outstanding thread of touching, thoughtful and heart rendering stories. As one of the co-authors of the recent Report to Congress your sharings underscore its theme of how incredibly important it is for us to educate all America about this issue. The trauma suffered by many of you as were forced to make what you understandably viewed as life and death decisions is a sad commentary on our over reliance on technology in health care. My thanks for your touching reflections and my sincere hope that CNN realizes what an important contribution these types of articles and dialogue do to elevate this critical public conversation.

    March 5, 2011 at 13:09 | Report abuse | Reply
  31. Leslie J

    When my dad died I was his health care surrogate and when he was admitted to the hospital for mini-strokes he was advised to have procedure that would clear out the arteries. I asked what were his chances of stroking or even dying during the procedure and the doc said 80%. My dad said no and I backed him on it. He died a week later after a massive stroke. I did not regret the decision because it was his!. When my daughter was not responding to treatment for pneumonia I made the decision to make her a DNR– it was a difficult decision. She did live for another 5 yrs and now 14 yrs after her passing I still feel as though I made the right decision.

    March 7, 2011 at 10:07 | Report abuse | Reply
  32. Rochelle

    My dad died 20 years ago and I still regret not doing what his living will said he wanted. He had a surgical lung biopsy and was diagnosed with lung cancer. Before he could recover from the surgery he contracted an antibiotic-resistant infection at the hospital and lived out the last 4 months of his life there and in a care center. When the doctors talked to us 3 days after the surgery they wanted permission to put in a feeding tube. He was on the ventilater already. He hadn't wanted extraordinary measures and no machines if he had no chance of recovery. Since it was early on and we had no way of knowing how bad it would get, my mom and I told them to go ahead. I saw him the morning after the surgery and he was smiling and had a twinkle in his eye. They were getting ready to move him to an ICU. Mom and I went to the cafeteria for a bite of breakfast while the move was taking place and I never again saw him awake. When we got to the ICU he was being combative, trying to pull the tubes out and get out of bed. I stayed on as long as I was able but I lived in another state and could not take more time off from work. I asked his brother and sister-in-law to stay with my mom as she was totally unable to handle what was happening, and I went back home. It was an awful time and throughout it I felt guilty that I had not done something so he didn't have to live on machines, but the doctors kept saying they thought he was recovering from the infection. I was called by his doctors after I'd been home a week and was told they had been changing his arterial line and while doing that his lung collapsed onto his heart and stopped it...they had brought him back and thought there was no brain damage. How I wished we had requested a DNR for him. He died two months later and I wasn't there. I let him down and he had had to live 5 months on a ventilator, in a hospital bed, and sick the whole time. My sister-in-law called me the very day he died and asked me to call the doctors, she said dad was much worse and seemed to be dying. I called the doctor and asked him the prognosis, he said: "It's awful." in just those words. He died that night. I'll always believe he was waiting until I acepted his death to go. For 20 years I have carried the pain of not doing the right thing by dad. No one gives a course in what to do when the time comes...especially when my mom was in complete denial and kept begging him not to leave her alone. I have a living will and pray my children will follow my wishes. I keep thinking "what goes around comes around" and that I may be in the same place and have the same things happen to me.

    March 8, 2011 at 02:10 | Report abuse | Reply
  33. Judy

    Don't Forget National Healthcare Decisions Day on Friday, April 16, 2010. On this day, all across the country, health care facilities, health care professionals, chaplains, the legal community, and others will be participating in a collective effort to highlight the importance of making advance healthcare decisions and to provide tools for making these decisions. Check out NHDD.org

    March 9, 2011 at 09:52 | Report abuse | Reply
  34. Jo

    my fathers end of life illness is dementia that is in a final stage, and final stage kidney failure. My mother and sister are so worn down from being homecaregivers and have chosen to prolong his life with a portable dialysis. After reading your post I don't feel the guilt, for wanting nature to take it's course with my dad,and seeing my mother and sister resume living again. He was a strong man that desired we moveforth in life. Thankyou getting it in writing is so important.

    June 1, 2011 at 23:09 | Report abuse | Reply
  35. loosmosmesy

    вельмі цікава, дзякуй

    June 5, 2011 at 09:20 | Report abuse | Reply
  36. Heather K

    My mother's body passed away 2 weeks ago this night after being removed from life support. She was gone several hours before. Her death was sudden and traumatic for all in the family. We knew her wishes well and had no hesitation. I am relieved that we were able to be there for her and follow through with her wishes even though I am heartbroken at our loss. She was only 53...

    March 26, 2012 at 00:04 | Report abuse | Reply
  37. Helen J

    After a month in what the Doctor calls an Alpha Coma on Monday our family will remove my sister from life support. She was in the grocery store shopping when she passed out and was rushed to the hospital. She was able to give her information to the Doctor and slipped into a coma not to ever wake up again. Her blood clot was in the Basilar Artery with damage to the Cerebellum. According to the Doctors they didn't expect her to survive more than a few days. She didn't have a living will, power of attorney, DNR nothing. We all knew she wouldn't want to live her life this way and the Doctors tell us she will never wake up. This decision to remove her has been agonizing for some of my family. I can't wait for her to have the peace she deserves. As difficult as it is to know I won't get a phone call from her everyday I know she will never be the person she would want to be. The thought of a state run facility caring for her would be a fate worse than death. Peace and love to my big sister...........God will care for you now.

    May 1, 2013 at 22:21 | Report abuse | Reply
    • Helen J

      Update on my sister. After the family removed her life support on Monday the 5th my sister began breathing on her own. Monday the 13th she awoke from her coma and is responding to questions by shaking her head. We showed her photos of her new great niece and she smiled. With that said one never knows what the power of pray and determination that our loved ones have within them. We believed she would never wake up from her coma based on information from the medical experts. She had a long road ahead of her only god knows when her time is really up. Keep the hope, faith for your loved ones. This is a miracle to say the least.

      May 16, 2013 at 12:22 | Report abuse |
  38. Helen J

    Another update on my sister. Sad to say my sister is nearing the end of her life. Just when we thought things are beginning to look up she totally shut down. The staff at the state run facility (say no more) believe she had another stroke leaving her totally unresponsive. She no longer moves, smiles, responds at all. This has been the most horrible, sad, emotional, stressful time in our lives. My husband passed many years ago after suffering terminal cancer but we talked, laughed, even joked about what's to come right to the end of his life. I wish I knew what was going on in her head. All I can do is talk to her and tell her stories and how much I love her. Peace

    August 13, 2013 at 10:44 | Report abuse | Reply
    • Helen J

      On August 20th at 6:43 PM Cindy took her last breath with a beautiful tear rolling down her left cheek. My brother John and I were with her. He said the most amazing thing " She is saying goodbye" as she took her last breath. I will never forget and hopefully I can begin again to live life and remember her for the times we had together from sharing a room to all the other joys in our lives. Peace to you big sister.

      August 24, 2013 at 12:26 | Report abuse |
  39. JS

    I too was forced to have to make this heartbreaking decision when my mother suffered of a massive stroke a year ago. My parents, being older than most parents, had planned for the end of their lives since we were children. So the plots, wills and arrangements were all taken care of except we never specifically discussed what we should do if they were in this situation. My dad had already passed of a massive heart attack 15 years prior, so no decision had to be made. It was and continues to be so difficult for me. I have been suffering of panic disorder since it happened and struggle with the guilt every single day. Although I know my mom would not want me to be causing myself such hardship..I can't help but feel what I'm feeling. Lesson learned, we've all now discussed how we would like things handled when our time comes.

    August 14, 2013 at 16:40 | Report abuse | Reply
    • Helen J

      JS: I don't think any of us believe we would have something like this happen where we couldn't tell anyone what we want. When she had the stroke in the store I thought she was meant to be there to be saved. When she came out of the coma and fought to stay alive I thought maybe she is okay with having limited mobility. There were signs of progress until the 2nd stroke. I would suggest you get some help to deal with the panic disorder and guilt. I stop myself when I question why did I allow the Doctors to do the surgery and why did I put the feeding tube in etc.... I prayed and prayed for her to give me a sign or blink her eyes, squeeze my hand. I wanted to ask her the question and have her give me the answer and she couldn't. In her head she may have been able to but her brain couldn't communicate it through her body. I hope we both get some peace. Prayers to you.

      August 26, 2013 at 10:38 | Report abuse |
  40. roxanne

    Mom take your time and make the best decision for you and the family.
    I had to make the same but totally different I went with my heart. My gut feeling my dad would wake up. The doctors said put him in a rest home. I told my Mom no i'm going to bring him home. So went on to break down the room and I took a leave from my job brought him home. Eight (8) months later my dad woke up. My ngighor came over every day called his name we could see miovement in his eyes. He woke up and 11 years more.

    Take your time let GOD lead your heart.

    December 18, 2013 at 00:33 | Report abuse | Reply
  41. dbsherri

    I am very ill and requested a DNR from my doctor. It took me a while to do, since I'm only 60, but as my health continues to decline from a genetic disorder called neurofibromatosis, I can't see me living after a major health event. My family knows this, and I went over the DNR sheet with all of them. You MUST take responsibility while you can, so your family does not have to be put through the anguish of making that decision.

    December 23, 2013 at 17:51 | Report abuse | Reply
  42. NUCLEARMIND

    May I ask a question here I think the many people here may know the answer to? If I wish my body to be cremated within 72 hours of my death,are there any laws in the US States that might prevent my wish from being carried out by my designated executor?

    December 23, 2013 at 18:48 | Report abuse | Reply
  43. Francesca Okajima

    Things i have observed in terms of computer memory is there are requirements such as SDRAM, DDR and so on, that must match the requirements of the motherboard. If the personal computer's motherboard is very current while there are no main system issues, upgrading the storage space literally requires under an hour or so. It's among the list of easiest laptop upgrade procedures one can envision. Thanks for expressing your ideas.

    http://yort.fr/

    January 18, 2016 at 04:01 | Report abuse | Reply
  44. Kerrie Hackbarth

    It's clear this post includes good tips looking at the large number of comments. Good content. Well done. Continue the insightful job.

    http://diabeteslocal.com/print/29730

    March 21, 2017 at 12:03 | Report abuse | Reply

Post a comment


 

CNN welcomes a lively and courteous discussion as long as you follow the Rules of Conduct set forth in our Terms of Service. Comments are not pre-screened before they post. You agree that anything you post may be used, along with your name and profile picture, in accordance with our Privacy Policy and the license you have granted pursuant to our Terms of Service.

Advertisement
About this blog

Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.