Do you have a living will? Interesting article

[Ottakee]

http://nypost.com/2012/12/09/diary-of-an-intensive-care-nurse/ A friend who is a doctor posted this on her facebook page.

 

There are a lot of questions as to how far should they intervene medically and when should they refrain.

 

Dh and I have a living will and have addressed these issues and I told him again what I wanted. I think there is a difference between a very short term medical intervention during a medical crisis or accident and going through heroic efforts when the outcome doesn't look good for an elderly person.

[OneStepAtATime]

We have living wills.  Thanks for the post.  Something to think about...

[G5052]

Keep in mind that even if you have a living will, it won't apply if it can't be found by those responsible for you (long story).

 

Or if the person you've put in charge is mentally incompetent to make such a decision because of dementia, and their doctors say there are no issues with them making that kind of decision, so going to court to push it to the secondary isn't an option (long story).

 

Or if the the person you've put it charge dodges the question for weeks and weeks, and only responds to phone calls when he/she feels like it (long story).

 

I agree with the nurses' comments.  Keep me out of ICU unless it is a short-term issue that I'm fully expected to recover from.

[ThatHomeschoolDad]

I have one and carry it in my medical binder to every procedure.  From nurses' reactions, it seems only a minority of patients do this.  They should.

[Pawz4me]

DH and I had living wills drawn up over 20 years ago.  Now, having gone through the horrible process with my mom--who didn't have a living will but had told us all repeatedly what she wanted and didn't want--I really need to get our living wills out and review them.  I know a *lot* more now than I did then as far as things that really need to be considered.

 

But I don't think that article is particularly helpful, other than I suppose it does bring the matter up for discussion.  Mostly it seems the author's purpose is to scare, w/o offering any helpful suggestions - like (IME) the need for much improved and honest communication between doctors and the patient's family.

[PeterPan]

DH and I had living wills drawn up over 20 years ago.  Now, having gone through the horrible process with my mom--who didn't have a living will but had told us all repeatedly what she wanted and didn't want--I really need to get our living wills out and review them.  I know a *lot* more now than I did then as far as things that really need to be considered.

 

But I don't think that article is particularly helpful, other than I suppose it does bring the matter up for discussion.  Mostly it seems the author's purpose is to scare, w/o offering any helpful suggestions - like (IME) the need for much improved and honest communication between doctors and the patient's family.

So what did you learn in your process?  We had some done, and I didn't like how it was handled at all.  That was years ago, and I think we're going to redo them at some point.  I'd be interested to hear your hindsite and tips on what you learned.

[Guest inoubliable]

I have one and carry it in my medical binder to every procedure.  From nurses' reactions, it seems only a minority of patients do this.  They should.

 

DH and I do the same. Comes from a time when he had a horrific car accident and spent days in a coma and had multiple surgeries to relieve pressure on his brain. We gave copies to our doctors, filed one with our state, keep copies in our safe, and carry copies in our medical binder when we go to a doc appt or ER. Just in case. 

[Mrs Mungo]

We have living wills. It's probably time to have them reviewed and updated. There are some decent articles out there on how to go through the process.

 

http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3284

 

http://www.americanbar.org/groups/law_aging/resources/consumer_s_toolkit_for_health_care_advance_planning.html

 

I actually know someone with a "Do Not Resuscitate" tattoo on their chest.

[abacus2]

I don't have a living will. Having never been in a situation where I might need one, I really don't know what measures I would or wouldn't want.

[gardenmom5]

- like (IME) the need for much improved and honest communication between doctors and the patient's family.

 

oh my yes.  I wanted to kick my mother's dr in the hospital.  he kept "offering hope" when there really wasn't any.  my sister jumped at any little bread crumb, irrationally so.  I felt it was a real disservice to her to string her along with false hope.  maybe he thought it allows relatives to disconnect emotionally 'after everything's been tried".  (she never would have willingly let go. she kept insisting mother was in *good* health before this happened and so of course she'd recover. denial is not a river in Egypt.)   I was thoroughly disgusted with him.

 

I was the MPoA for her living will, and it was very well documented in her medical file at the hospital.  (and that became a big deal when my brother was causing trouble at. the. hospital.  they even consulted hospital lawyers about how to deal with him.  having the documentation I was the MPoA in her file - I had to bring a new copy every time she was hospitalized - avoided even worse hassle.)

[scubamama]

Former ICU RN here (now homeschooling and not at the hospital, thank God!) That article seriously upset me - b/c I can relate to everything she said. The patient case studies she mention are so true as to be stereotypes. ICU is a depressing place for patients, families, and nurses. People don't really know what "medical lingo" means, what "procedures" will do, and what outcomes they can expect. Emotions run high...stories about what your friend's neighbor's cousin had happen are what you hear as a caregiver...and angry protests as to why the patient isn't instantly cured like on that show on TV.

Really, the only honest communication going on may be between the nurses during shift report. Staff is bound by privacy regulations and sorting out who is in charge in the family can be difficult. Drs can't go around speculating and making promises - talk, talk , talk to each other about what your wishes are. Expose yourselves to possibilities in end of life care - the great outcome we all hope for vs the terrible ones. Try to get the whole family on the same page - nothing is worse than a circus of screaming family members brawling in the hall outside ICU over a DNR. Ask me how I know.

I am passionate about caring for people - and about respecting their wishes. Nurses are advocates for patients and a re bound by our code of ethics to put forward their best interests as stated by the patient (in a Living will Addvance Directive, family members statements of patients wishes) It is soul grinding to see people suffer - that's someone's mother, daddy, grandma, sweetheart. I have seen many tears shed at work in the ICU...by the nurses.

 

Michele

[Pawz4me]

So what did you learn in your process?  We had some done, and I didn't like how it was handled at all.  That was years ago, and I think we're going to redo them at some point.  I'd be interested to hear your hindsite and tips on what you learned.

 

Not sure I can articulate this in a very coherent or helpful (and certainly not concise) way, but here goes --

 

When DH and I had our living wills made, I was working for an attorney who was somewhat of a pioneer in health care law and in making living wills and health care powers of attorney common documents.  I worked with it every single day, so I knew DH and I needed one, but we were relatively young and healthy and busy and I only thought about what I wanted/didn't want in a very perfunctory way.  I had a hazy vision of myself in a hospital bed and the doctor telling DH he was so sorry but there was absolutely no hope of recovery.  And of course in that situation almost everyone is going to think "I do NOT want to be kept alive artificially in that condition.  Period."  That's an easy decision.  I didn't consider any gray areas.  I also didn't consider that there's not always the luxury of time to make decisions.  Sometimes things have to be decided quickly.

 

Fast forward many years.  My mom was 79, frail but had no life-threatening issues that we knew of.  She saw her doctor every six months to keep check on her blood pressure and cholesterol.  She was involved in a car accident (not her fault).  EMS personnel had to cut her out of the car.  When I got to the ER she was  bruised all over but alert and very coherent and even joking a bit.  She checked out okay except for the bruises and three cracked ribs.  The ER doc warned that pneumonia was the big concern.  He said it was for anybody with cracked ribs, but especially for someone her age.  So he decided to stick her in ICU overnight just so the nurses could keep close watch on her.  They told us she was by far the most stable person they had in the ICU, and if anyone else came in they'd have to kick her out.  So we were feeling pretty good about the situation.

 

But by the next afternoon pneumonia had developed and she crashed.  Very quickly.  We had to make a decision--and make it fast--on whether or not to put her on a ventilator.  She didn't have a living will, but she had always told us that she never wanted to be hooked up to machines to keep her alive.  But when she told me that I'd always envisioned that cut-and-dried, no hope scenario.  Not pneumonia after a car accident.  And I'd never thought to ask her "But what if this happens?  Or this?"  My brother was the one who told them to go ahead put her on the ventilator.  I couldn't do it. I just did not know what to do in that situation, what she'd want.  Plus at that time the ICU doc said it would probably only be for 24-48 hours.  So even though I couldn't bring myself to make the decision, it really didn't seem to be that big of a deal.  Only 24-48 hours, probably.

 

To make a long story short, 24-48 hours turned into weeks before they could get the pneumonia under control.  And her lungs (damaged from her having smoked years ago) were never able to recover.  We eventually had to make the decision to turn off the ventilator.  She died about two hours after it was turned off.

 

In the weeks that she was going through that in ICU, I don't think the doctors were particularly helpful.  My sense was that they wanted to be optimistic instead of realistic.  Every time we talked to one we were told "It's not time to make any big decisions yet, let's give it another week, or another ten days, or let's try this and this before we make any decisions."  I know they're not God and they can't know how any given person will respond.  I know they're trained to heal people and that's what they want to do.  I know those gray area cases are hard for them.  But we really felt like nobody was being realistic with us, even when we asked for them to be brutally honest.

 

So I guess that's my long winded way of saying that when you make a living will don't just envision the "no hope" scenario.  Think about all the "what ifs" you can imagine, and what you'd want done (or not) in different scenarios.  Don't assume the person making decisions for you will have the benefit of clear cut guidance from medical professionals.

 

I think the most helpful comment I got during that whole ordeal was from a hospital paper pusher.  She said she had told her DH that in the event of something like what my mom was going through happening to her, she wanted to be given a six weeks' chance.  She thought that was a reasonable time to try for a recovery from something like that.  And I think she's probably right.

[G5052]

DH and I do the same. Comes from a time when he had a horrific car accident and spent days in a coma and had multiple surgeries to relieve pressure on his brain. We gave copies to our doctors, filed one with our state, keep copies in our safe, and carry copies in our medical binder when we go to a doc appt or ER. Just in case. 

 

Yes, we do as well, and have always received positive feedback.  We always prepare for the worst, from hard experience.

[PeterPan]

Not sure I can articulate this in a very coherent or helpful (and certainly not concise) way, but here goes --

 

When DH and I had our living wills made, I was working for an attorney who was somewhat of a pioneer in health care law and in making living wills and health care powers of attorney common documents.  I worked with it every single day, so I knew DH and I needed one, but we were relatively young and healthy and busy and I only thought about what I wanted/didn't want in a very perfunctory way.  I had a hazy vision of myself in a hospital bed and the doctor telling DH he was so sorry but there was absolutely no hope of recovery.  And of course in that situation almost everyone is going to think "I do NOT want to be kept alive artificially in that condition.  Period."  That's an easy decision.  I didn't consider any gray areas.  I also didn't consider that there's not always the luxury of time to make decisions.  Sometimes things have to be decided quickly.

 

Fast forward many years.  My mom was 79, frail but had no life-threatening issues that we knew of.  She saw her doctor every six months to keep check on her blood pressure and cholesterol.  She was involved in a car accident (not her fault).  EMS personnel had to cut her out of the car.  When I got to the ER she was  bruised all over but alert and very coherent and even joking a bit.  She checked out okay except for the bruises and three cracked ribs.  The ER doc warned that pneumonia was the big concern.  He said it was for anybody with cracked ribs, but especially for someone her age.  So he decided to stick her in ICU overnight just so the nurses could keep close watch on her.  They told us she was by far the most stable person they had in the ICU, and if anyone else came in they'd have to kick her out.  So we were feeling pretty good about the situation.

 

But by the next afternoon pneumonia had developed and she crashed.  Very quickly.  We had to make a decision--and make it fast--on whether or not to put her on a ventilator.  She didn't have a living will, but she had always told us that she never wanted to be hooked up to machines to keep her alive.  But when she told me that I'd always envisioned that cut-and-dried, no hope scenario.  Not pneumonia after a car accident.  And I'd never thought to ask her "But what if this happens?  Or this?"  My brother was the one who told them to go ahead put her on the ventilator.  I couldn't do it. I just did not know what to do in that situation, what she'd want.  Plus at that time the ICU doc said it would probably only be for 24-48 hours.  So even though I couldn't bring myself to make the decision, it really didn't seem to be that big of a deal.  Only 24-48 hours, probably.

 

To make a long story short, 24-48 hours turned into weeks before they could get the pneumonia under control.  And her lungs (damaged from her having smoked years ago) were never able to recover.  We eventually had to make the decision to turn off the ventilator.  She died about two hours after it was turned off.

 

In the weeks that she was going through that in ICU, I don't think the doctors were particularly helpful.  My sense was that they wanted to be optimistic instead of realistic.  Every time we talked to one we were told "It's not time to make any big decisions yet, let's give it another week, or another ten days, or let's try this and this before we make any decisions."  I know they're not God and they can't know how any given person will respond.  I know they're trained to heal people and that's what they want to do.  I know those gray area cases are hard for them.  But we really felt like nobody was being realistic with us, even when we asked for them to be brutally honest.

 

So I guess that's my long winded way of saying that when you make a living will don't just envision the "no hope" scenario.  Think about all the "what ifs" you can imagine, and what you'd want done (or not) in different scenarios.  Don't assume the person making decisions for you will have the benefit of clear cut guidance from medical professionals.

 

I think the most helpful comment I got during that whole ordeal was from a hospital paper pusher.  She said she had told her DH that in the event of something like what my mom was going through happening to her, she wanted to be given a six weeks' chance.  She thought that was a reasonable time to try for a recovery from something like that.  And I think she's probably right.

Thanks for sharing all that.  It must have been dreadfully hard.  The irony is it sounds like leaving her off the ventilator to start with was what she wanted.  I agree though that would have been HORRIBLY hard to see someone go from vibrant to incapacitated and sick so quickly.  I would have felt the same way your brother did.

 

I guess that's to me the difficulty in sorting it out.  I agree I don't want to be a vegetable on a machine (I'm not afraid of dying), but I don't care to die NEEDLESSLY.  That comment about 6 weeks resonates with me, but then the family is left in the position of unplugging, which is also very hard, isn't it?  Which would have been worse (or preferable), to make the decision in a snap and then wonder or how you did, giving her the time and then realizing you had to unplug?

 

I don't really know how I would know all the scenarios and possibilities even to have thought through them, mercy.  I was dissatisfied with our experience with the lawyer and how it was drawn up, because they pre-drafted something, without even talking to me, and then just said SIGN.  I'm like (delete expletive) I might be young but I SURE didn't think it was supposed to work like that.  And then you read what you're supposed to be signing, and it's like LET ME DIE, LET ME DIE, and I'm thinking that ISN'T what I meant!!!!!!  So I ended up writing a bunch on it in my own hand and scratching out stuff.  

 

Ok, really simple dumb (not dumb?) question.  If you have a living will and are married, is the person you're married to supposed to be that person?  What if you're both in an accident?  So then is there supposed to be first and 2nd?  Or the person you list trumps the spouse??  Told you I was totally disastisfied with how ours was handled, lol.  They didn't explain ANYTHING.  

[Pawz4me]

Sorry, neither quoting or copy/paste is working for some reason.

 

As far as whether never putting her on the ventilator to begin with would have been easier than making the decision to turn it off -- I don't know.  It's a question I ask myself all the time.  Certainly it would have been easier for her.  But I'm not sure I could have lived with myself if I'd made that decision (but I wouldn't have blamed or second guessed my brother if he had said "no" to the ventilator).  It's a case where even though she had told us what she wanted/didn't want, if she'd had a very well thought out living will it probably would have made things a lot easier on us.

 

A living will is the document that states what extraordinary measures, if any, you want made to extend your life.  You can say you don't want anything, or you can designate what is acceptable to you and what is not.  You can say you don't want anything if you're diagnosed with a terminal condition, or that certain things are okay if there's a chance of recovery.  You can get as specific as you want.

 

A health care power of attorney is the document that names someone to make health care decisions for you in the event you become incapacitated.  That can be a spouse but it doesn't have to be.  You could name a sibling or a friend or a neighbor if you want.  And you can designate multiple people in the event your first choice is unable to fulfill his/her duty as your HCPOA.  My HCPOA designates my DH first, and if for any reason he's not able to, then my brother is designated.

 

I *believe* that a living will takes precedence over anything a health care power of attorney says.  But I'm not totally sure on that, and it probably varies from state to state.  Everyone really needs to have both documents.

[Miss Tick]

Radiolab did a story called The Bitter End which touched on some of the things you might want to consider in a Living Will - like CPR, ventilators and feeding tubes.  The discussion compared the general public's yes/no on those to the response of the medical community.  It didn't specifically address living wills that I recall, but after I heard it my dh and I had an interesting discussion about updating ours.

[alef]

I don't have a living will, but it sounds like a good idea. How do you go about finding an attorney who would be good at walking us through the various options? Are there attorneys who specialize in such things?

[Ottakee]

I had to help make the decisions with my FIL this spring. He was in end stage renal failure, had multiple hospitalizations, very weak, had part of a lung removed due to lung cancer, etc. He did not have a living will so when he coded 3 times they brought him back. Finally it got to the point where the decision was made to remove the vent after weeks and weeks of the hospital, NG tube, etc. I have told dh that if that was me, have a very clear DNR and don't start with the vent, etc.

 

If though it is a car accident or something with good hopes of recovery then yes, I would do a vent short term but not if there is significant brain injury, etc. Hard stuff to think about but important.

[Twigs]

Not sure I can articulate this in a very coherent or helpful (and certainly not concise) way, but here goes -- …

:grouphug:  :grouphug:  :grouphug:

Thanks for sharing.

[Pawz4me]

I don't have a living will, but it sounds like a good idea. How do you go about finding an attorney who would be good at walking us through the various options? Are there attorneys who specialize in such things?

 

Yes, there are attorneys who specialize.  But most "general purpose" attorneys should be familiar with living wills and health care powers of attorney.  You can even find the forms online or through something like LegalZoom.  If possible I'd go with a local attorney, though, who will be familiar with your state's laws.  A good attorney can also help you work through some of the "what if" scenarios, and should maintain an original signed copy of your documents in his/her files in case your copies get misplaced.  Of course for that to help you need to inform your family that the attorney has copies of those documents.

 

I suspect most state bar associations have referral services.  I know ours does.

 

[PeterPan]

Thanks Pawz, that's helpful!  

[gardenmom5]

Former ICU RN here 

I was so grateful for the ICU nurses.  I got straight answers and information and they were very supportive.

 

eta: we had reassessed my mom's advance directive shortly before her last medical crisis.  you either perform a procedure or you don't.  there isn't time in the crisis moment for many livesaving procedures to evaluate "will this work or not".  you can only do those assessments when the patient is stable.  if you do the interventions, you have the option of reassessing when you have more information - such as what is the likelihood of recovery.   and time.

 

after my mother was warmed up from the artic sun blanket it was clear there was significant brain damage.  (and the dr was encouraging with "let's wait and see".  the ICU nurses - and nephew - were all, she's not going to recover.  i got the sense the doc was covering his posterior so as to "let the family down gently" and not have mass hysteria on hand.  I was disgusted with him for not giving straight answers.)