We are AVM survivors, here for your support.

Advance Directives & Medical Power Of Attorney

Not to be morbid, but both of these topics seem to be relevant to us. Since many of us have bleeds that are unexpected, I think its critical that we make sure these questions are taken care of according to your wishes.

Before I had the bleed (not even aware of the impending AVM bleed), I had a MPOA completed so that my partner would have the right to make decisions were I not able to. Thankfully he was immediately available to authorize surgery to relieve the pressure on my brain. Otherwise, they would've had to track down my parents. For those of you who are single, you should consider identifying whom you want to make any decisions if you don't want it to be your next of kin.

Advance Directives aren't an easy thing to complete, but I did have peace of mind about the potential issues I might experience in my life. Since the AVM bleed, I have revisited both documents to make sure they are up to date with my wishes.

What have others done in this area? (I think its important to talk about and is a key part of managing our care.)

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Replies to This Discussion

Permalink Reply by Shalon on December 3, 2008 at 1:54pm

Hey Brain. You're right, this is a good topic and something that should be thought about. Everytime I go for treatments, the admission process includes a "do you have a living will or would you like info on one?" And while it isn't quite as pertinent for me (I'm married and not going to have the AVM bleed in my brain!) it is still important. Of course I haven't actually done anything about it. Shame on me! :)

This is a good link that talks about the different legal options and what they actually do.

http://www.alllaw.com/articles/wills_and_trusts/article7.asp

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Permalink Reply by Loz on December 3, 2008 at 4:40pm

I drew up my own advance directive when I went to the hospital last tme, and have updated it for when I have my general anaesthetic for gamma knife next week. My partner told me about advance directives, I'd never heard of one. As well as nominating someone to make decisions if I am unable to do so, I have included things about my wishes for treatment and personal care.

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Permalink Reply by laurie Bauer on December 16, 2008 at 5:00am

I think I have mentioned before that I am a nurse and spent many years working in an ICU where these decisions had to be made pretty often. Having an advance directive is such an important thing. Everyone should have one whether they are sick or not. That is why all hospitals in the US have to offer information on advance direction upon admittance to the hospital, it is required because they are trying to educate the public. It is the kindess thing you can do for your family. When it comes to major decisions especially end of life decisions it is a really difficult time for familes. They have often expressed that they feel like they are killing their loved one, or in some way responsible for their death. Having an advance directive takes a lot of this pressure away from your family that is so emotionally depleted. It takes the burden of making a decision away from them. I always explained that they are only following what the patient wanted because he could not speak for himself, and therefore not really making the decison but rather carrying out what the patient wants. Unfortunately there are many factors that come into play during this time. Thirty days after any surgery patient death is reportable as related to the surgery itself, and additionally many surgeons have a hard time accepting failure. Sometimes treatment continues longer than it should because of this. I do not believe their intent is self centered but rather the feeling that they have failed in some way. Even with these documents the doctor can still challenge what the patients wishes were. It is therefore important to ask for a patient advocate, additionally all hospitals have an ethics committee that can help. It is very difficult for families who do not have an advance directive even if their loved one told them all of their wishes. I have seen situations where the family actually had to write letters defending and proving what their loved one wanted in order to have those wishes carried out. It then is brought to an ethics committee which the doctor must be present for as well. When families are emotionally exhausted already, this is truly a burden. Unfortunately stress can bring out the worst in families, and it is very common for family members to disagree on what should be done, only making it more stressful for the spokesperson. I can not express how important it is that when filling out an advance directive, less is more. DO NOT write in detailed instruction especially about artificial nutrition etc. It is much better to say "my representative knows my wishes". If you feel your loved one may find it hard to remember each of these things leave it written down at home like a grocery list for them but do not put it in the advance directive. I can not stress how important this is because if you write these details down they can be interpreted as something other than what you really wanted. It is really hard to navigate the health care system, so if you do get to the point where you are confused and getting mixed answers from different docs, insist on a family meeting that includes all of the healthcare team. This will usually consist of the patient advocate, social work, all disciplines involved and a nurse. This is the best way to get everyone on the same page and help you to get all the information you need. Definition of quality of life is so different to every person that is why it is so important to make your wishes known. Sometimes your family just loves you so much that they find it difficult to let go and lose sight of all the terrible things the patient has to endure. Life itself is important but it the journey throughout it is more important. Same with death, it is just a different journey and how you get there is important. Making an end of life decision allows the medical team to turn their attention from keeping you alive no matter how painful it is for the patient, to changing direction to do everything they can do to keep the patient comfortable even if it might hasten death. Miracles do happen, unfortunately not all that often. I know that is a terrible thing to say, but I have seen far more people suffer waiting for that miracle than not. Having said that probably makes me public enemy number one. I do not want to ever take anyones hope away because it is so important, but rather to make sure people remain realistic. I am not saying to give up but rather to be better able to recognize that point where you are allowing more harm than good. I know I am going on and on about this but it has always been one of the most difficult part of my job. Not only is the patient my job but the whole family is, and I just want to get that information out there so that we can best help them and their loved one. My husband is one of those miracles and there were many times that I had to make decisions that were hard. I think that knowing him wanted him back so badly had to be separated from what was best for him and what he would have to endure when I had to make those decisions. I hope I have not offended any one by saying all that I have said and please understand that I am well intentioned. I just thought that I could offer some insight from the medical teams point of view and how having that information going into my husbands illness helped me. God bless you all. Laurie

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Permalink Reply by Connie T on December 20, 2008 at 8:58pm

I don't know how I missed this post, Brian, but I'm glad you did. I have a question about married people: if I tell my husband my wishes, is that enough?

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Permalink Reply by jessica on December 25, 2008 at 12:23am

ive been thinking about this actually since im going off to college next fall. i was thinking of getting a med alert bracelet and putting my surgeons number on there or something sinve i will be 4 hours from home...

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Permalink Reply by Denise Iverson on December 30, 2008 at 9:00pm

jessica said:

ive been thinking about this actually since im going off to college next fall. i was thinking of getting a med alert bracelet and putting my surgeons number on there or something sinve i will be 4 hours from home...

Jessica...I had a medical alert bracelet made for Ashley at a site called laurenshope.com
they have very beautiful pieces, but after I ordered found that there are more reasonably priced sites so check around. Hers states "diabetic, AVM left frontal lobe, stroke risk, and then my phone number! Good luck in college!

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Permalink Reply by Denise Iverson on December 30, 2008 at 9:06pm

Excellent advice. I made Ashley fill one out before the first embolization attempt....at 19 years old they just assume Mom will still take care of everything but as they are legal adults that isn't true. So we put it all in writing and thank the good lord we haven't had need of it yet!! Forwarned is forarmed!!! This is extremely important even for those who are married, with today's crazy privacy laws and in the US the hippa laws, you cannot assume your spouse will be allowed to make decisions on your behalf...it is always better to have everything documented! Thanks for introducing this topic! Denise

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Permalink Reply by Brian on December 31, 2008 at 10:07am

Connie- you can certainly tell your husband of your wishes and I would hope that he would follow them. Its important to know, though, that he can do whatever he wants (ignore, modify or implement) your wishes unless they are in writing and in your files. Your husband would be the primary decision maker should you be incapacitated. You should also consider what would happen should your husband not be around. For example, you're out shopping or on a trip and he's not reachable. Then your doctors would need to know what to do.

Connie T said:

I don't know how I missed this post, Brian, but I'm glad you did. I have a question about married people: if I tell my husband my wishes, is that enough?

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Permalink Reply by Brian on December 31, 2008 at 10:26am

Hi, again- I wanted to clarify the differences between a Medical Power of Attorney (MPOA) and an Advance Directive.

MPOA's are typically for individuals who want to designate someone else to make decisions about their care if they cannot do so themselves. For example, you have a bleed, are unconscious and the doctors need permission to insert a shunt into your head to relieve the pressure. MPOA's also allow that other individual to have access to ALL of your medical records, participate in any discussions about your medical history and answer any questions a medical provider may have about you even if you're not there. So, be thoughtful about whom you choose for this role.

An Advance Directive is typically concerned with situations where you are in a persistent vegetative or non vegetative state. For example, it will state whether or not you should receive food & water if you aren't able to ask for it. It also typically will contain information about whether or not the medical staff should take steps to resuscitate you if your heart stops or if there is no brain activity. This document SUPERSEDES any instructions given by your spouse, parents or anyone else you have identified as your medical advocate. In the U.S., the "order" of decision making is: spouse, parents, siblings then your closest other blood relative.

If you do not have these documents in your medical file, medical decisions will be made by your closest next of kin, medical staff or the courts.

Morbid, I know, but there are important distinctions.

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Permalink Reply by Michelle on January 14, 2009 at 1:57pm

As a parent of a AVM Child I also was advised to have a living will and MPOA for my son. If medical staff deam me as a parent not in my right mind, do to Anxiety , emotional breakdown or not in my right mind do to the crisis they may not let me make decisions for him. BUT if I have a medical power of attorney done when their is nothing going on they have to follow that. Just a word of advise for us PARENTS out there of children.

ALSO know that if you look through your childs Hospital Record ( you have a right to a copy) You might be shocked to see that the social worker for the hospital was evaluating your mental status everyday. Don't be shocked like I was when I asked for a copy and read through it!!!

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Permalink Reply by Christine on January 17, 2009 at 1:22pm

Hey Brian,
At Boston Children's hospital, where I am getting treatment, they made me sign on before I had any type of treatments done.

It's kind of amazing to me, as I am only 21 years old now and began my treatment at 19 years old.

Christine

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Permalink Reply by pauline horsley on January 17, 2009 at 4:07pm

Hi Brian I know that I should take care of this . Thay have asked me in the hospital , I just say no , because the thought of it alone scares me. But like Laurie said it can be hard on your family if they have to make the choices .I should do it myself and not have any of my three children do it , If one calls all the shots and something goes bad , I wouldn't want them or the others to place blame . Also something I want to do is be a organ doner AGAIN everytime I am asked I put it off . SELFISH But I'm working on it !!!