Neurovascular surgery and advance directive planning
June 4, 2016 6:09 AM Subscribe
As mentioned in a previous question, doctors found another problem.
During the MRI that diagnosed my slipped disc, the doctors found a level III Cognard arteriovenous fistula in my head, behind my right eye. Diagnosis was confirmed via angiogram this past Monday. (For those who don't know, as I certainly didn't: an artery and a vein have formed a connection, which is not as cute as it sounds). According to my (pretty great!) surgeon, that carries a 10% risk per year of cerebral haemorrhage. Surgery, embolization which they're going to do endoscopically (tube up my femoral artery, then either glue the connection shut or block it with putty), carries a one-time 10% risk of, quote "death, stroke, blindness, loss of motor function, disability."
I'm freaking out a bit. And since I'm trying to do that adulting thing people keep talking about, it seems pretty clear with these risks that I need to fill out an advance directive, just in case.
My problem is time. I have a pre-admission appointment with the anesthetist this coming Wednesday, with surgery tentatively scheduled for Thursday. I work today and tomorrow, which basically leaves me Monday and Tuesday to somehow figure out what I want in my advance directive, who I want to hold it, and then see my GP on Wednesday at some point to make sure it's in my chart and all that.
I've read this from Dying With Dignity, and it's helpful, but not granular enough for my needs. I'm looking for something similarly step by step that (in case something goes horribly wrong) guides my proxy through a decision tree rather than the more blanket statements. Does such a tool exist?
And how the hell do I even choose who to do this? The two people in my life who would be the obvious choices seem to be a bad fit: I'm pretty sure one would not, in the end, let go even if it were clear that's what I would want; the other has a long history of thinking they know better than me, particularly in terms of what will help/hinder my health (example: forcibly hugging me while having a panic attack, flat-out ignoring "this isn't helping let me go stop now.")
I'm managing the fear as best I can. This could be a profoundly life altering experience, and while I know that a 10% adverse risk means a 90% chance of everything being fine, 10% is a huge number. And when medical access is predicated on urgency, going from diagnosis to probable surgery in ten days is extremely worrisome. If anyone can direct me to some easily-understood-by-layperson breakdown of specific risks for this surgery as opposed to the flat 10% number, that would be great. Like, metastudy kinda thing, nicely summarized. I've googled but it's all very dense and overwhelming.
tl;dr:
- Advance directive: how to choose who, how to present my needs in more of a flowchart/decision tree format
- Specific risks of this surgery, bigger sample size the better
Thanks.
During the MRI that diagnosed my slipped disc, the doctors found a level III Cognard arteriovenous fistula in my head, behind my right eye. Diagnosis was confirmed via angiogram this past Monday. (For those who don't know, as I certainly didn't: an artery and a vein have formed a connection, which is not as cute as it sounds). According to my (pretty great!) surgeon, that carries a 10% risk per year of cerebral haemorrhage. Surgery, embolization which they're going to do endoscopically (tube up my femoral artery, then either glue the connection shut or block it with putty), carries a one-time 10% risk of, quote "death, stroke, blindness, loss of motor function, disability."
I'm freaking out a bit. And since I'm trying to do that adulting thing people keep talking about, it seems pretty clear with these risks that I need to fill out an advance directive, just in case.
My problem is time. I have a pre-admission appointment with the anesthetist this coming Wednesday, with surgery tentatively scheduled for Thursday. I work today and tomorrow, which basically leaves me Monday and Tuesday to somehow figure out what I want in my advance directive, who I want to hold it, and then see my GP on Wednesday at some point to make sure it's in my chart and all that.
I've read this from Dying With Dignity, and it's helpful, but not granular enough for my needs. I'm looking for something similarly step by step that (in case something goes horribly wrong) guides my proxy through a decision tree rather than the more blanket statements. Does such a tool exist?
And how the hell do I even choose who to do this? The two people in my life who would be the obvious choices seem to be a bad fit: I'm pretty sure one would not, in the end, let go even if it were clear that's what I would want; the other has a long history of thinking they know better than me, particularly in terms of what will help/hinder my health (example: forcibly hugging me while having a panic attack, flat-out ignoring "this isn't helping let me go stop now.")
I'm managing the fear as best I can. This could be a profoundly life altering experience, and while I know that a 10% adverse risk means a 90% chance of everything being fine, 10% is a huge number. And when medical access is predicated on urgency, going from diagnosis to probable surgery in ten days is extremely worrisome. If anyone can direct me to some easily-understood-by-layperson breakdown of specific risks for this surgery as opposed to the flat 10% number, that would be great. Like, metastudy kinda thing, nicely summarized. I've googled but it's all very dense and overwhelming.
tl;dr:
- Advance directive: how to choose who, how to present my needs in more of a flowchart/decision tree format
- Specific risks of this surgery, bigger sample size the better
Thanks.
10% is okay. It's not 10% death, it's 10% of an adverse outcome that includes lots of things - mild disabilities, strokes, short comas, to death - which you'll need to look at the specific research to see what applies to you, a generally healthy and relatively young person. Is it 10% for all patients, and this condition usually is found in much older men with diabetes, for example, making you a big outlier without two risk factors of age and a co-morbid complication?
From an earlier comment: What also helped enormously was the Stephen Jay Gould's piece on his cancer diagnosis about medical statistics, The Median Isn't The Message which explains how to think about and investigate the very scary statistics you see in your own individual case. I had a doctor shove 50% mortality rates at me that turned out to be closer to 4% when considered with other factors, when pressuring me to make a decision she wanted.
There's Get Your Shit Together and Good To Go which have decent non-sentimental checklists about the practical stuff that needs to be done. You don't have to do ALL of it right now. You just need to do the major stuff - the will and the advanced directive are the easiest to get done and the most helpful for peace of mind, I think, but YMMV.
For the surgery, you can ask your surgeon to schedule time to walk you through it, but it depends on your surgeon. I've had doctors who won't walk a patient through a surgery and doctors who will explain it and list resources to understand more. It depends on the doctor's beliefs about patient awareness and it has little to do with their actual technical skill, and you have a short timeline.
You may just have to work on accepting that the surgery will be a black box event before it. You might have patients' rights in Canada that let you get a copy of the surgical report afterwards, but with the time you have before the surgery - if you knew more about the surgery, would you be able to change the surgery such as changing the surgeon or choosing a different technique? Or will you end up having the same surgery anyway?
Put your spoons into what you can do something about - making the hospital stay comfortable, getting your paperwork ready, and then afterwards being able to understand more about the operation.
(I've been in a time-limited decision before and had to make choices, and it was very hard but you have only so much energy to fight hospital and medical rules and that's energy you could be using to look up at the sky and eat cake and call friends with the same surgery taking place and the same outcome.)
Also a literal flowchart or If this, then go to A, B, C can be really helpful for people and for you to write out. It's a great idea! Much love fffm.
posted by dorothyisunderwood at 6:42 AM on June 4, 2016 [11 favorites]
From an earlier comment: What also helped enormously was the Stephen Jay Gould's piece on his cancer diagnosis about medical statistics, The Median Isn't The Message which explains how to think about and investigate the very scary statistics you see in your own individual case. I had a doctor shove 50% mortality rates at me that turned out to be closer to 4% when considered with other factors, when pressuring me to make a decision she wanted.
There's Get Your Shit Together and Good To Go which have decent non-sentimental checklists about the practical stuff that needs to be done. You don't have to do ALL of it right now. You just need to do the major stuff - the will and the advanced directive are the easiest to get done and the most helpful for peace of mind, I think, but YMMV.
For the surgery, you can ask your surgeon to schedule time to walk you through it, but it depends on your surgeon. I've had doctors who won't walk a patient through a surgery and doctors who will explain it and list resources to understand more. It depends on the doctor's beliefs about patient awareness and it has little to do with their actual technical skill, and you have a short timeline.
You may just have to work on accepting that the surgery will be a black box event before it. You might have patients' rights in Canada that let you get a copy of the surgical report afterwards, but with the time you have before the surgery - if you knew more about the surgery, would you be able to change the surgery such as changing the surgeon or choosing a different technique? Or will you end up having the same surgery anyway?
Put your spoons into what you can do something about - making the hospital stay comfortable, getting your paperwork ready, and then afterwards being able to understand more about the operation.
(I've been in a time-limited decision before and had to make choices, and it was very hard but you have only so much energy to fight hospital and medical rules and that's energy you could be using to look up at the sky and eat cake and call friends with the same surgery taking place and the same outcome.)
Also a literal flowchart or If this, then go to A, B, C can be really helpful for people and for you to write out. It's a great idea! Much love fffm.
posted by dorothyisunderwood at 6:42 AM on June 4, 2016 [11 favorites]
FFFM. Crap! Sorry you're having to deal with this.
These are worth buying and are the gold standard in advance directives they have tons of clearly laid out directions a that give you a kind of written flowchart experience on how much loss of autonomy, pain, function etc you are willing to deal with in case of health problems as well as room for customization if necessary. .....essentially pretty much every outcome can be encoded in them.
Main thing is to make sure that i) you have it witnessed signed and ii) that your primary care physician has it and notifies any other doctors.
They're worth buying for peace of mind. Wishing you strength.
posted by lalochezia at 6:50 AM on June 4, 2016 [1 favorite]
These are worth buying and are the gold standard in advance directives they have tons of clearly laid out directions a that give you a kind of written flowchart experience on how much loss of autonomy, pain, function etc you are willing to deal with in case of health problems as well as room for customization if necessary. .....essentially pretty much every outcome can be encoded in them.
Main thing is to make sure that i) you have it witnessed signed and ii) that your primary care physician has it and notifies any other doctors.
They're worth buying for peace of mind. Wishing you strength.
posted by lalochezia at 6:50 AM on June 4, 2016 [1 favorite]
Also backing up dorothyisunderwood's comment 100%. "10% is okay. It's not 10% death, it's 10% of an adverse outcome that includes lots of things - mild disabilities, strokes, short comas, to death - which you'll need to look at the specific research to see what applies to you, a generally healthy and relatively young person.".
But get the advanced directive in place ANYWAY. You can always change it later!
posted by lalochezia at 6:52 AM on June 4, 2016
But get the advanced directive in place ANYWAY. You can always change it later!
posted by lalochezia at 6:52 AM on June 4, 2016
The most urgent issue is for you to identify someone who is capable of fulfilling the proxy as you want done and then name that person in the official legal directive with no other persons named in a way that might allow them counter-authority. In the USA, many state recognized directives are quite generic since it's impossible to include all contingencies, and a flow chart or alternate document may not be legally enforceable. That said, a signed dated flow chart or similar that clearly states your preferences will help support your proxy and the hospital if others try to object.
I look forward to hearing this operation went successfully.
posted by beaning at 7:03 AM on June 4, 2016
I look forward to hearing this operation went successfully.
posted by beaning at 7:03 AM on June 4, 2016
You might check with the hospital to see if you can designate a social worker or other hospital functionary as a temporary proxy. It sounds like you're clear on what is and isn't okay, you'll be able to communicate that to them, and chances are they've got enough experience to avoid one of the biggest problems with designating an emotionally-attached proxy, which is that they've seen too much TV.
posted by Lyn Never at 8:19 AM on June 4, 2016 [2 favorites]
posted by Lyn Never at 8:19 AM on June 4, 2016 [2 favorites]
Yes, hospitals increasingly provide advanced health care directive services, free, and they are very experienced at walking people through them. (They often do a better job at it than lawyers, IMO.) And they have the benefit of being able to dump the directive directly into your chart. I would begin with calls to the involved physicians' offices and hospital and ask what's available.
This resource is intended largely to help adult children talk to their aging parents about end of life medical care wishes, but I think it does a pretty good job laying out the scope of the decisions you might include in an advance health care directive. You might walk through the tool to help organize your thoughts.
Also, and I'm not positive about this so look it up for your province and all, but I believe in Canada you have a choice of two forms of advance health care directive -- a proxy directive, where you name someone to make decisions on your behalf if you are unable, and an institutional one, where you lay out for the hospital what decisions you would like made (in very general or very specific terms) and do not name a proxy. It's possible that given your lack of an appropriate proxy, and short length of time to decide, you may prefer an institutional order.
(If you are in Ontario, here is some specific Ontario info from the office of the public guardian, who typically serves as a proxy when one is needed and you don't have one. They call the institutional-type order with no named proxy a "living will" or "advance directive" so I think that's what you'll want to be googling.)
I would urge you to focus on going through and thinking about your advance directive wishes this weekend (and speaking with the hospital about how to proceed with your advance directive if they have specific requirements), and worry about possible proxies Monday. You may find you don't feel you need a proxy after going through the advance directive information and organizing your thoughts, or you may find that you know who you want to name as a proxy after thinking through everything for the directive. Worrying about both at once will make you crazy; decide what you want first, then decide if you need to name someone as a proxy only after you've finished the first part.
posted by Eyebrows McGee at 9:41 AM on June 4, 2016 [2 favorites]
This resource is intended largely to help adult children talk to their aging parents about end of life medical care wishes, but I think it does a pretty good job laying out the scope of the decisions you might include in an advance health care directive. You might walk through the tool to help organize your thoughts.
Also, and I'm not positive about this so look it up for your province and all, but I believe in Canada you have a choice of two forms of advance health care directive -- a proxy directive, where you name someone to make decisions on your behalf if you are unable, and an institutional one, where you lay out for the hospital what decisions you would like made (in very general or very specific terms) and do not name a proxy. It's possible that given your lack of an appropriate proxy, and short length of time to decide, you may prefer an institutional order.
(If you are in Ontario, here is some specific Ontario info from the office of the public guardian, who typically serves as a proxy when one is needed and you don't have one. They call the institutional-type order with no named proxy a "living will" or "advance directive" so I think that's what you'll want to be googling.)
I would urge you to focus on going through and thinking about your advance directive wishes this weekend (and speaking with the hospital about how to proceed with your advance directive if they have specific requirements), and worry about possible proxies Monday. You may find you don't feel you need a proxy after going through the advance directive information and organizing your thoughts, or you may find that you know who you want to name as a proxy after thinking through everything for the directive. Worrying about both at once will make you crazy; decide what you want first, then decide if you need to name someone as a proxy only after you've finished the first part.
posted by Eyebrows McGee at 9:41 AM on June 4, 2016 [2 favorites]
fffm, i'm so sorry to hear you're having to deal with this. If you can leave it to the institution to carry out your wishes, that seems like an option worth considering. If you would prefer to name an individual, do you have any friends who maybe aren't as close as the two you're thinking of, but who are responsible, clear-eyed, and duty-minded, and who you would trust to take in, understand, and evaluate medical advice?
posted by cotton dress sock at 12:21 PM on June 4, 2016
posted by cotton dress sock at 12:21 PM on June 4, 2016
Advice sounds like it's covered; just dropped in to say that I hope this goes well for you.
posted by randomkeystrike at 12:46 PM on June 4, 2016 [1 favorite]
posted by randomkeystrike at 12:46 PM on June 4, 2016 [1 favorite]
The following is accurate where I live, and may be accurate where you live.
The person who makes medical decisions for you based on a document is authorized to do so only if you are unable to make your own decisions. You obviously can make your own decisions. Tell your anesthetist and your surgeon what you want and what you don't want.
posted by yclipse at 1:43 PM on June 4, 2016
The person who makes medical decisions for you based on a document is authorized to do so only if you are unable to make your own decisions. You obviously can make your own decisions. Tell your anesthetist and your surgeon what you want and what you don't want.
posted by yclipse at 1:43 PM on June 4, 2016
Check your MeMail.
posted by herrdoktor at 7:48 PM on June 4, 2016
posted by herrdoktor at 7:48 PM on June 4, 2016
I keep thinking about your question & I'm sending good wishes your way.
I'm going through some similar stuff and I can't emphasize enough the importance of self-direction in seeking medical care. This is your life and your body and you have a right to fully understand the options and associated risks. If your surgeon cannot or will not explain the procedure, you have the right to push back and escalate if necessary to make sure you are fully informed to a level that you're comfortable with. If you are feeling rushed into a treatment option that is not quite to the point of an emergency, you have the right to delay for a week or more until you get the answers you need. I am finding that people really do want to help if you ask.
That said, a 10% risk, while scary at first, is oddly livable. My particular health issue means I am staring down a 90%-ish survival rate for the next year, and I find that statistic sobering but also weirdly empowering now that I've gotten used to it. Something awful could happen, but in general the odds are with me. And they're with you, too.
posted by mochapickle at 11:20 AM on June 5, 2016
I'm going through some similar stuff and I can't emphasize enough the importance of self-direction in seeking medical care. This is your life and your body and you have a right to fully understand the options and associated risks. If your surgeon cannot or will not explain the procedure, you have the right to push back and escalate if necessary to make sure you are fully informed to a level that you're comfortable with. If you are feeling rushed into a treatment option that is not quite to the point of an emergency, you have the right to delay for a week or more until you get the answers you need. I am finding that people really do want to help if you ask.
That said, a 10% risk, while scary at first, is oddly livable. My particular health issue means I am staring down a 90%-ish survival rate for the next year, and I find that statistic sobering but also weirdly empowering now that I've gotten used to it. Something awful could happen, but in general the odds are with me. And they're with you, too.
posted by mochapickle at 11:20 AM on June 5, 2016
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posted by roomthreeseventeen at 6:19 AM on June 4, 2016 [4 favorites]