has anyone made the decision to withdraw life support?

[dec756]

almost 9 months ago (i cant believe its been that long) my brother was in a motorcycle accident. his head/body t-boned a car that pulled out in front of him while he was going about 50 mph. he has severe traumatic brain injury and is not responsive, in a coma/vegetative state. he is 21 years old and he is my only brother. as you can imgine, this is extremely difficult but i cant help thinking that he would not want to carry on this way. at what point do you decide to do something? i cant even go see him it is too heartbreaking. he is in a nursing home about 30 minutes away. what should we do? the only figure ive ever really gotten is a 1 in 100,00 chance of recovery (and by recovery, maybe he would be able to swallow?)

[BillK]

My mom passed away in March - after a long bout with a lot of things culminating with a heart attack while she was in an assisted living home. My dad, sisters and I had to make that decision and it sucked. But after all she'd been through over the past 5-10 years we knew it was the right thing as she'd never have recovered and been able to live a normal life.

I know it's not the same situation as your brother is young and my mom was 77 - but it's still a horrible decision to have to make. I hope you can make the one that's right for everyone involved - only you and your family know what that is. Sorry I'm not more help.

[pb&j]

I would strongly urge you to seek the help of hospice, a hospital chaplain, clergy, or similar. I've not been exactly in your shoes, but I can tell you that when my first pregnancy was going very badly, I was counseled by a hospital chaplain who made a world of difference to me as DH and I considered our options. We are not religious, but having someone to discuss spiritual and ethical issues in a healthcare context was so helpful.

Making an end of life decision on behalf of someone else who can't decide for themselves is extremely difficult. You need support and companionship no matter what your decision - can the nursing home recommend any support groups? Is there a social worker assigned to your brother who can offer resources?

I'm sorry for what you're going through.

[dogmom]

I've helped my family make it and I've worked with families too many to count to make that decision. Who is making the decision? Just you? The family? Are you just supporting the decision? I ask because your role can really vary.

You can't predict the future, so don't dwell too much on the 1 in a million chance. Try to think about your brother and how he would respond to the questions given his circumstances. Think about how he lived his life. It is also OK to reach out to friends that might have spent more time with him as an adult who may have had casual conversations about these issues. It is also OK to think about his situations effects your family. (Many people think it is selfish, but the family is a unit.) For example, I may not want to lie comatose in a nursing home with my husband feeling obligated to come visit me every week knowing he could never move on in his life. It's also OK if different family members have different feelings about this, parents may let go later than siblings, for example.

If your family does decide to withdraw or withhold therapies, ask the care team how this is usually handled. I think it unfair to give a laundry list to a family making this decision and go down a checklist and ask if you want or don't want these things. We consider it CMO (comfort measures only) so we tend to say we will do things that prevent any potential suffering, but not do anything aimed at primarily prolonging life. They should also be able to tell you the range of things that may happen and how they will address them.

I'm sorry you are in this situation, many people are. It is never an easy decision, even when someone's wishes are clear. Feel free to contact me.

[TwoBees]

I don't have any advice, except to follow your heart. I'm so, so sorry you have to go through this. :grouphug:

[jerigirl]

I don't have any advice, except to follow your heart. I'm so, so sorry you have to go through this. :grouphug:

:yeahthat: I am sorry that you and your family have such a difficult decision to make.

[Indianamom2]

First, I'm so sorry that you're dealing with this difficult issue. I can only imagine how hard it must be.

I have no personal experience here, but I think you've gotten some very good advice from other posters. You need some support and I think hospice would be a good resource at a time like this.

:hug:

[JustMe]

I am sorry you are in this very difficult situation. My sister and I did have to make the decision to take my father off of life support. I echo the pps to consult with other "professionals". It can really give you a perspective and if everyone else starts saying the same thing, you may either strongly agree or disagree with them. Also, talking to those who are involved in these types of decisions on a regular basis, and understand the complexities and emotions, can be really helpful.

[crayonblue]

Yes. We stopped DD2's tube feedings. We stopped them when we felt we could no longer keep her comfortable. She was unresponsive and unaware at that point and going from one pneumonia to another.

We had Hospice care which helped immensely. We also sought both medical and spiritual guidance from people we respected (doctors, pastors, friends). In the end, it was our decision to make but it helped to have sound advice.

We spent a great deal of time praying.

It was a very hard decision but it was 100% the best decision for DD2 and our whole family. With the help of a lot of morphine and ativan, she died a very peaceful, easy death.

I'm sorry you are going through this. It is so difficult.

[hillview]

I've helped my family make it and I've worked with families too many to count to make that decision. Who is making the decision? Just you? The family? Are you just supporting the decision? I ask because your role can really vary.

You can't predict the future, so don't dwell too much on the 1 in a million chance. Try to think about your brother and how he would respond to the questions given his circumstances. Think about how he lived his life. It is also OK to reach out to friends that might have spent more time with him as an adult who may have had casual conversations about these issues. It is also OK to think about his situations effects your family. (Many people think it is selfish, but the family is a unit.) For example, I may not want to lie comatose in a nursing home with my husband feeling obligated to come visit me every week knowing he could never move on in his life. It's also OK if different family members have different feelings about this, parents may let go later than siblings, for example.

If your family does decide to withdraw or withhold therapies, ask the care team how this is usually handled. I think it unfair to give a laundry list to a family making this decision and go down a checklist and ask if you want or don't want these things. We consider it CMO (comfort measures only) so we tend to say we will do things that prevent any potential suffering, but not do anything aimed at primarily prolonging life. They should also be able to tell you the range of things that may happen and how they will address them.

I'm sorry you are in this situation, many people are. It is never an easy decision, even when someone's wishes are clear. Feel free to contact me.

Dog mom made some excellent points. I helped my grandma as she died and a close friend unplugged his mom on lifesupport when we were 18. I also second the idea to contact someone in hospice.

So sorry you are dealing with all this.
/hillary

[BelleoftheBallFlagstaff]

I took my dad off of oxygen in our home, knowing he would die. He was a DNR patient and had esophageal cancer. He was hallucinating, with moments of clarity. I told him to move his eyebrows it it was okay to take him off, and he did. Maybe it was a reflex, but I took it as a sign and did. It was the last day of my second trimester. He died peacefully, and I am so thankful to hospice for that. I gave him a hospice suppository and extra morphine.

I think you have to listen to instincts and follow signs from God or the universe and do what feels right. No matter what you choose, you might second guess yourself, and that is okay.

:grouphug:

[Globetrotter]

I am sorry you have to go through this heartbreaking process. huge :grouphug: and P&PT that you will make the right decision for your family.

[wendibird22]

I am so sorry for all that you, your family, and your brother are going through. I have no personal experience however I'm a firm believer that we all have an inner voice that guides us during these types of situations. We may not always hear that voice, or listen to it, or trust it at first, or want to accept what the voice is saying, but this heart or instinct or faith is there in each of us to guide our decisions. I'm certain that you have a voice to guide you to the "right" decision. And I agree with PPs that support services can help you through this.

[niccig]

My family had a similar motorcycle accident and coma with my cousin. For 3 months we didn't know if he would wake up or not. Family members deal with this in very different ways - some good, some quite hurtful. I second the reaching out to others for advice and support.

:hug: I'm so sorry you're family is going through this.

[sntm]

I'm so sorry about that terrible tragedy - he is so young.

I've been on the medical side countless times, and it is heart-wrenching every time. I agree with talking with the people who know him the best to see what he would want, talking with hospice people and clergy, and listening to the medical professionals as well. They are often torn between hating to dash any hopes but trying to be realistic, so make sure they are communicating (and you are receiving) realistic prognoses. There are also numerous levels of withdrawing support, so you can pick which specific measures you and your family are comfortable agreeing to.

Whatever you decide, my thoughts are with you.

[elephantmeg]

I guess it really depends on how much support he is on. As a nursing coordinator I see a fair amount of what we call terminal weans-families decide to take a family member off the ventilator. It is a little harder when they can breathe on their own. I would encourage your family to talk with your physician about the options. But I know that in his shoes I would want to be let go. I'm sorry you are going through this.

[twowhat?]

I read this when you first posted but wanted to wait until I had more time to post to respond. I really just wanted to send hugs. I cannot imagine how hard that is for all of you. I lost my (only) brother earlier this year to suicide and honestly your situation seems tougher, to have to deal with all the unknowns, and the hope, and the dashing of hope for such an extended period of time...

If it were my brother, I know he would not want to continue on in that way. You know your brother best. Whatever decision you and your family make will absolutely be the right one. I echo PPs who said to please take advantage of hospice in weighing your options.

:hug: