Advance Health Care Directive - End-of-life decisions - How do I decide?
March 7, 2013 12:02 AM Subscribe
Recently I had a California Advance Health Care Directive drawn up (free when you buy a Will!) Whoa... this is a tough question! End of Life Decision:
A) Choice not to prolong life
B) Choice to prolong life
Which one should I pick? How do I go about picking one? More details inside
About me:
1. Not religious. Mostly athiest.
2. I live by myself, no dependents.
3. I'd be survived by my parents and siblings - none of whom are religious.
Being pragmatic, I'm leaning towards "A" - Choice not to prolong life. I'd like to avoid a Terri Schiavo situation.
But... but... part of choosing "A" says "I become unconscious and, to a reasonable degree of medical certainty, I will not regain conciousness."
How certain is certain?
How do I go about picking a choice?
About me:
1. Not religious. Mostly athiest.
2. I live by myself, no dependents.
3. I'd be survived by my parents and siblings - none of whom are religious.
Being pragmatic, I'm leaning towards "A" - Choice not to prolong life. I'd like to avoid a Terri Schiavo situation.
But... but... part of choosing "A" says "I become unconscious and, to a reasonable degree of medical certainty, I will not regain conciousness."
How certain is certain?
How do I go about picking a choice?
There was a recent Radio Lab Podcast about end of life decisions which you might find helpful. I believe it is called 'The Bitter End.'
posted by jazh at 12:29 AM on March 7, 2013 [1 favorite]
posted by jazh at 12:29 AM on March 7, 2013 [1 favorite]
'How certain is certain' is a question no-one can answer. Imagine you're struck down and unconscious. The doctors say 'we're reasonably certain StrictlyVague won't wake up. What should we do?'
Whoever is forced to make this decision (your parents, likely) will likely have nothing more to go on than this. How should they go about picking a choice? That's the question you're being asked.
I'm sure the doctors would not say something like 'reasonably certain' unless they were, well, reasonably certain. There's no 100% in this world, but neither are they going to pull the plug unless they think you won't wake up.
posted by PercussivePaul at 12:30 AM on March 7, 2013
Whoever is forced to make this decision (your parents, likely) will likely have nothing more to go on than this. How should they go about picking a choice? That's the question you're being asked.
I'm sure the doctors would not say something like 'reasonably certain' unless they were, well, reasonably certain. There's no 100% in this world, but neither are they going to pull the plug unless they think you won't wake up.
posted by PercussivePaul at 12:30 AM on March 7, 2013
How certain is certain?
As certain as the doctor who evaluates you feels. That's sort of the point to these things, that it puts the decision in someone else's hands in the case you can't make a decision because you're unconscious. if you're uncomfortable leaving your care to an unknown doctor or two then designate a family member to make decisions for you. Just be sure they'll follow your wishes.
posted by fshgrl at 12:30 AM on March 7, 2013
As certain as the doctor who evaluates you feels. That's sort of the point to these things, that it puts the decision in someone else's hands in the case you can't make a decision because you're unconscious. if you're uncomfortable leaving your care to an unknown doctor or two then designate a family member to make decisions for you. Just be sure they'll follow your wishes.
posted by fshgrl at 12:30 AM on March 7, 2013
It's a huge question you're dealing with, I've been looking at refining my end of life paperwork also, as some of the people who are listed are now themselves struggling with some issues of their own. For me, I want to absolutely state that if my heart is still kicking out the blood, then I want to be held onto, maybe a week, two weeks. I'm going to run this past my cardiologist, maybe even burn an Ask here, gain some more clarity on it. Obviously if my brain is crushed and my heart is still clicking, hey, harvest anything that'ld help anyone anywhere -- including my heart, if anyone needs it -- and then pull the plug and wave me goodbye.
But I've died, big series of heart attacks one Tuesday morning, and long dead without oxygen in a friends truck headed to the hospital, and a case could easily have been made to jerk the plugs and let me go. My family believed in my coming back, my friends did also, and the doctors, while they were careful to raise no real hopes, well, they did see the love and enthusiasm of my friends and family, I had people all over this planet praying for my lame ass, plus I'm pretty stubborn, too, and now here I am, eight years later, telling you that it looked very, very bad, very little hope for me, had the doctors followed logic they'd have sent me on my way, and instead of writing to you here I'd be long gone.
So I'm going to go with something like 10 days comatose (so long as my brain isn't beaten to pudding) and if after ten days nothing is happening, grab any goodies off this ol' body and then wave me goodbye.
~~~
Since there are two options, one possible solution is that you flip a coin.
posted by XMLicious at 2:09 AM on March 7
I'll add to that this fun tester -- flip the coin, call it heads or tails, then IMMEDIATELY upon seeing what the coin toss determined, get a read on your gut. Does it feel right, do you feel like "Phew, thank goodness." with a lightness in your heart, or maybe more does it feel like "Ah, shit." This actually works, for me anyways, and for some others I've turned on to it, and it works even though I know that I'm going to get a read off my reaction -- it seems that the reaction still happens, for whatever reason. Obviously this isn't science and maybe wouldn't want to base your total decision on this, but it can help you get into the right neighborhood.
posted by dancestoblue at 1:09 AM on March 7, 2013 [2 favorites]
But I've died, big series of heart attacks one Tuesday morning, and long dead without oxygen in a friends truck headed to the hospital, and a case could easily have been made to jerk the plugs and let me go. My family believed in my coming back, my friends did also, and the doctors, while they were careful to raise no real hopes, well, they did see the love and enthusiasm of my friends and family, I had people all over this planet praying for my lame ass, plus I'm pretty stubborn, too, and now here I am, eight years later, telling you that it looked very, very bad, very little hope for me, had the doctors followed logic they'd have sent me on my way, and instead of writing to you here I'd be long gone.
So I'm going to go with something like 10 days comatose (so long as my brain isn't beaten to pudding) and if after ten days nothing is happening, grab any goodies off this ol' body and then wave me goodbye.
~~~
Since there are two options, one possible solution is that you flip a coin.
posted by XMLicious at 2:09 AM on March 7
I'll add to that this fun tester -- flip the coin, call it heads or tails, then IMMEDIATELY upon seeing what the coin toss determined, get a read on your gut. Does it feel right, do you feel like "Phew, thank goodness." with a lightness in your heart, or maybe more does it feel like "Ah, shit." This actually works, for me anyways, and for some others I've turned on to it, and it works even though I know that I'm going to get a read off my reaction -- it seems that the reaction still happens, for whatever reason. Obviously this isn't science and maybe wouldn't want to base your total decision on this, but it can help you get into the right neighborhood.
posted by dancestoblue at 1:09 AM on March 7, 2013 [2 favorites]
Instead of doing this binary kind of thing, have a long conversation with one of your family members that you trust the most. Write down on a piece of paper all the different scenarios you may imagine, and what you may imagine you want: no nursing home with feeding tube, no dialysis if I have Alzheimers, etc... Talk over this paper with them. Then get them legally named as your healthcare care power of attorney. They make the decision at the time you are unable to, based on the conversation you had, and the exact situation at the time.
Here is a nice document that talks about options.
And realize that even though you live in California, if you get ill in another state or country, its the laws of that state/country that will determine what will happen, what you or your proxy can refuse and whether or not your advanced directive is honored.
Congratulations on doing this - Now fellow Mefites go and do the same!
posted by SyraCarol at 3:32 AM on March 7, 2013
Here is a nice document that talks about options.
And realize that even though you live in California, if you get ill in another state or country, its the laws of that state/country that will determine what will happen, what you or your proxy can refuse and whether or not your advanced directive is honored.
Congratulations on doing this - Now fellow Mefites go and do the same!
posted by SyraCarol at 3:32 AM on March 7, 2013
It would also help to talk with a physician about this, preferably outside the examination room. Here are a couple of thoughts:
- In the vast majority of cases, the doctor will not decide and announce on the first day that "We're reasonably certain that he will not recover." Many things can happen, especially early in the course of a crisis injury or illness.
- The paperwork is a guide for your family. The choices you make should be discussed with them ahead of time to ensure that they are comfortable and consistent with yours. Without the paperwork, they will make these decisions without your input.
posted by yclipse at 4:47 AM on March 7, 2013
- In the vast majority of cases, the doctor will not decide and announce on the first day that "We're reasonably certain that he will not recover." Many things can happen, especially early in the course of a crisis injury or illness.
- The paperwork is a guide for your family. The choices you make should be discussed with them ahead of time to ensure that they are comfortable and consistent with yours. Without the paperwork, they will make these decisions without your input.
posted by yclipse at 4:47 AM on March 7, 2013
Frederick Wiseman's documentary Near Death (1989) is a fantastic look at the patients and families who are put in this position from both the perspective of the clinicians and the patients' loved ones. It certainly helped me make up my mind about the subject.
I won't give my opinion because it's irrelevant to your decision but remember that
1) You can ALWAYS change your mind no matter what your lawyer writes, and if you are ever in that position the clinicians will repeatedly ask you what you want and if you have changed your mind before they discontinue treatment.
2)Like others have said, it is more a guide for your family in the event that you are not in a state where you are capable of expressing your wishes.
posted by WhitenoisE at 5:16 AM on March 7, 2013
I won't give my opinion because it's irrelevant to your decision but remember that
1) You can ALWAYS change your mind no matter what your lawyer writes, and if you are ever in that position the clinicians will repeatedly ask you what you want and if you have changed your mind before they discontinue treatment.
2)Like others have said, it is more a guide for your family in the event that you are not in a state where you are capable of expressing your wishes.
posted by WhitenoisE at 5:16 AM on March 7, 2013
Well, one thing to remember is that your advanced directive is not set in stone. Should your life experiences change - you meet someone and get partnered up, you have a kid, you experience a religious epiphany, you see someone suffer, you wake up one morning and change your mind - you can change your advanced directive.
If you are close with your parents or any of your siblings, it's not too weird nowadays to ask them their thoughts. Sometimes someone close to you might come up with something unique to you that speaks to you in a way strangers on the internet cannot.
You can also build in contingencies into your advanced directive. For example, you can say, "Yes, absolutely hook me up to some life-saving tubes, until a brain scan detects no brain activity." Or, "Yes, absolutely hook me up to some tubes until the following people are notified that I am in this state and can come say their goodbyes." Mine says, "Do not hook me up to life-prolonging tubes for any reason except in the case that I should happen to be pregnant, in which case, do what you need to do to get to a point at which the baby can be delivered safely, then please unplug me." (I see from your previous questions that you are male, but contingency is contingency.)
Whatever your decision, please be sure to carry a laminated card with your choice ("DNR" or "Advanced Directive" plus the physical location of your advanced directive, like "In Lockbox 331 at Chase Bank, 351 Elm St. Los Angeles CA") in your wallet, in case something happens to you while you're out and about and paramedics are first responders.
posted by juniperesque at 5:27 AM on March 7, 2013
If you are close with your parents or any of your siblings, it's not too weird nowadays to ask them their thoughts. Sometimes someone close to you might come up with something unique to you that speaks to you in a way strangers on the internet cannot.
You can also build in contingencies into your advanced directive. For example, you can say, "Yes, absolutely hook me up to some life-saving tubes, until a brain scan detects no brain activity." Or, "Yes, absolutely hook me up to some tubes until the following people are notified that I am in this state and can come say their goodbyes." Mine says, "Do not hook me up to life-prolonging tubes for any reason except in the case that I should happen to be pregnant, in which case, do what you need to do to get to a point at which the baby can be delivered safely, then please unplug me." (I see from your previous questions that you are male, but contingency is contingency.)
Whatever your decision, please be sure to carry a laminated card with your choice ("DNR" or "Advanced Directive" plus the physical location of your advanced directive, like "In Lockbox 331 at Chase Bank, 351 Elm St. Los Angeles CA") in your wallet, in case something happens to you while you're out and about and paramedics are first responders.
posted by juniperesque at 5:27 AM on March 7, 2013
There was a recent Radio Lab Podcast about end of life decisions which you might find helpful. I believe it is called 'The Bitter End.'
There was one part of that episode that really changed my thinking about the subject. Basically, when doctors are asked to make these decisions, the vast majority choose to avoid life-extending interventions. These are the people who see what those interventions really look like, and they don't want any part of it.
posted by diogenes at 7:27 AM on March 7, 2013 [2 favorites]
There was one part of that episode that really changed my thinking about the subject. Basically, when doctors are asked to make these decisions, the vast majority choose to avoid life-extending interventions. These are the people who see what those interventions really look like, and they don't want any part of it.
posted by diogenes at 7:27 AM on March 7, 2013 [2 favorites]
I checked out the California-specific POLST site, stands for Physician Orders for Life Sustaining Treatment. I saw the form with Choice A and Choice B. Underneath that link there is a second form you can use which you might like more, called "Easy To Use Advance Directive Forms". It's really the same two options, but they phrase it in a way that you might prefer, and they give you a space to opt in or out of very specific treatments.
Also I can see that the first part of the form ensures that you will have a healthcare proxy for decisionmaking. On the Easy to Use form there is a box you can check to say that your healthcare proxy must follow your choices on the form precisely no matter what, but there is also a box that would allow them to use their discretion based on the situation. That allows you to get around a lot of "what ifs".
The CA POLST site also has a page of resources for how to determine what decisions are right for you about end of life care.
As a side note, I am a doctor and I feel exactly as diogenes described. My husband and I have both told each other a hundred times that we don't want heroic measures in cases like these.
Remember that a majority of people will die after a prolonged period of illness and these are the scenarios that you are more likely to be facing, the situation where you are young and healthy but in a coma from a fairly isolated severe head injury is rare (this is a situation your healthcare proxy would wrestle with).
The more common scenario, sadly, is an elderly person with congestive heart failure, diabetes, and kidney trouble or metastatic cancer and yet I have to shock them and break their ribs with chest compressions when they come in coding because no one ever talked to them about end of life wishes. Every time it happens it renews my zeal to help people learn about expressing their end of life wishes.
See this article on "How Doctors Die" for more details about how doctors feel about end of life care.
posted by treehorn+bunny at 8:18 AM on March 7, 2013 [1 favorite]
Also I can see that the first part of the form ensures that you will have a healthcare proxy for decisionmaking. On the Easy to Use form there is a box you can check to say that your healthcare proxy must follow your choices on the form precisely no matter what, but there is also a box that would allow them to use their discretion based on the situation. That allows you to get around a lot of "what ifs".
The CA POLST site also has a page of resources for how to determine what decisions are right for you about end of life care.
As a side note, I am a doctor and I feel exactly as diogenes described. My husband and I have both told each other a hundred times that we don't want heroic measures in cases like these.
Remember that a majority of people will die after a prolonged period of illness and these are the scenarios that you are more likely to be facing, the situation where you are young and healthy but in a coma from a fairly isolated severe head injury is rare (this is a situation your healthcare proxy would wrestle with).
The more common scenario, sadly, is an elderly person with congestive heart failure, diabetes, and kidney trouble or metastatic cancer and yet I have to shock them and break their ribs with chest compressions when they come in coding because no one ever talked to them about end of life wishes. Every time it happens it renews my zeal to help people learn about expressing their end of life wishes.
See this article on "How Doctors Die" for more details about how doctors feel about end of life care.
posted by treehorn+bunny at 8:18 AM on March 7, 2013 [1 favorite]
From a MeFite who would prefer to remain anon:
The MOST IMPORTANT thing on this form is the designation of your agent. Never forget that. It is the agent you designate who will ultimately be working with your doctors in making final decisions. And keep the phone numbers current.posted by jessamyn at 8:25 AM on March 7, 2013 [1 favorite]
One of my very beloved patients died a little while ago. He had been doing poorly for many months and he knew it. He was an independent man who lived alone and pretty much refused to accept help from anyone. And a loving loving man with many friends, though friends at a distance. His driver friend, B., who has been bringing him to appointments for 15 years, told me afterwards that he only allowed her into the house in the last month, only let her help with the grocery shopping for the last couple. This, a man with too little stamina and to take a shower more than once a week, but who used some of that stamina to bake cookies for us last Christmas.
At any rate, in his conversations with us and B, over many months, he said that he knew which way the wind was blowing, and that he can accept that, and that he would want to go peacefully when his time came, etc., etc. But when he put things in writing, he would not trust anyone to be his agent AND said that he would want everything possible done. Really, he was so ambivalent about letting go-aren't we all to some degree?- and was so worried that people would just take one look and give up on him too soon when there was really another trip home left in him. So when B drove him to the local emergency room -on a Saturday, with his regular doctors and social workers and nurses off for the weekend- he ended up with a breathing tube.
A brother lived in an area with spotty phone reception and could not be reached. So ultimately, he had to suffer til Monday when everybody who knew him could discuss things with the doctors taking care of him and he had to suffer until then. B left work to sit with him for a while before they disconnected things and I am grateful to her for that.
Interestingly, on the way to the hospital, he knew he would be staying for a while. He gave B the keys to the house, told her how to contact the brother at work on Monday if she couldn't reach him earlier, and even told her where his money was hidden. So if he was that cognizant, why did he let them put the tube in? Maybe in the end this is what he did want-everything done until it really wasn't possible to do more.
Anyway, please designate an agent and make sure he or she knows what you want.
Blessings on us all at the end of our lives, whenever that may be.
On reading this update from the anonymous answerer, I had another thing to add: yes, the healthcare proxy is the most crucial piece, in addition to ensuring that the contact information is always correct, I would urge you to ensure that the person you choose is correct.
This happens more often when there is no healthcare proxy specified and the next of kin is being used, but all too frequently, there is a person, perhaps not a relative but a neighbor, friend, or significant other, who is helping to care for you at the end of your life. They spend a lot of time with you, help you with your medical needs, and they know what you want for your end of life care and the details of your medical situation because they may help you with your meds, take you to doctor appointments, and basically talk to you regularly. Then something happens where you're unable to make healthcare decisions for yourself, and that faithful friend is there with you all the way, holding your hand and by your side in the hospital. They try to express what your wishes were to your doctors. Unfortunately, legally your doctors cannot take that person's word for it. They have to call your cousin Brenda, or your uncle Bob, or your estranged son who you haven't seen in a year, because that person is your next of kin. And I will tell you that relative who doesn't know you well almost invariably says "do everything." (it's kind of understandable, no one wants to err on the side of withdrawing care) Infuriating to all parties involved.
So as you go through life, just be sure that your healthcare proxy stays up to date and that the person who knows your wishes best is the one who the doctors can call upon when needed.
posted by treehorn+bunny at 8:53 AM on March 7, 2013 [1 favorite]
This happens more often when there is no healthcare proxy specified and the next of kin is being used, but all too frequently, there is a person, perhaps not a relative but a neighbor, friend, or significant other, who is helping to care for you at the end of your life. They spend a lot of time with you, help you with your medical needs, and they know what you want for your end of life care and the details of your medical situation because they may help you with your meds, take you to doctor appointments, and basically talk to you regularly. Then something happens where you're unable to make healthcare decisions for yourself, and that faithful friend is there with you all the way, holding your hand and by your side in the hospital. They try to express what your wishes were to your doctors. Unfortunately, legally your doctors cannot take that person's word for it. They have to call your cousin Brenda, or your uncle Bob, or your estranged son who you haven't seen in a year, because that person is your next of kin. And I will tell you that relative who doesn't know you well almost invariably says "do everything." (it's kind of understandable, no one wants to err on the side of withdrawing care) Infuriating to all parties involved.
So as you go through life, just be sure that your healthcare proxy stays up to date and that the person who knows your wishes best is the one who the doctors can call upon when needed.
posted by treehorn+bunny at 8:53 AM on March 7, 2013 [1 favorite]
Whoever ends up with your PoA needs to live nearby you and agree with your wishes. This is a huge problem for me because the only relative that should get my PoA is my mother (friends move around and whoever has it needs to be close to my location/a near relative/preferably both) and when my dad had a DNR, well....in the heat of the moment, this did not happen. The doctors will listen to a crying relative over a piece of paper.
posted by jenfullmoon at 6:37 PM on March 7, 2013
posted by jenfullmoon at 6:37 PM on March 7, 2013
This thread is closed to new comments.
posted by cyml at 12:25 AM on March 7, 2013 [1 favorite]