Question on advance directives

[badatmath]

How did you decide what you want to accept? I mean I have zero medical knowledge. I don't want to suffer for no reason. But . . .

Yes I will ask an attorney but I thought it likely I should have a clue first.

 

[Lewis Clark]

Think about what your friends, family members or other people you know have gone through in their final few years. What would want or not want?

Your local library probably has books that discuss these issues. Read a few to get a feel for the typical scenarios, and possible ways to address them.

Read the book "Being Mortal" for things to think about.
Being Mortal | Atul Gawande

Check the web site for the Department of Elder Affairs in your state. The name may vary in different states.

Also look at POLST, an organization and process devoted to advance care planning.
https://polst.org/

 

[Teacher Terry]

I don’t want to be kept alive in a persistent coma or vegetative state. I filled out a medical POA and my kids are aware and in agreement about my wishes.

 

[badatmath]

I will check the book and org, thanks. My family mostly dropped dead at young ages there was no suffering involved and question of fixing it.

Are you expected to define persistent with a timeline of say 30 days 90 days etc? Or does it just mean doc says it will not get better?

This must be the dumbest question I ever asked since I usually get more answers. Oops.

 

[ncbill]

If you don't do one you'll likely have everything done to you at the end.

There's usually model forms for each state...and I say forms because IIRC there's at least one state out there that requires one form for making 'everyday' medical decisions but also a separate form for (refusing) life-sustaining treatments.

Remember to pick an agent (your representative) who has the intestinal fortitude to see your wishes are carried out.

 

[blueskyk]

It’s not a dumb question at all - just one many prefer not to think about. Good for you for seriously considering your choices at the end.

Take a look at fivewishes.org for a booklet that helps you walk through documenting your wishes for care and comfort when the time comes. And, do this sooner rather than later. Once you’ve made your selections, formalize them with appropriate documents and talk about them with others.

Just speaking for myself and being very familiar with the medical establishment, you may not like all that can be done for you to be done to you (and your loved ones).

 

[user5027]

Google Karen Ann Quinlan.

 

[pacergal]

Can you make an appointment with your PCP to review unfamiliar medical terminology or procedures?
When I was working, reviewing advanced directives or a POLST was part of our requirements for insurance companies for clients 65 and over.
We did not have clients make/choose/or sign while in office, just review what things meant as best we could, and advised them to review with family members or an attorney.
Then we would request they bring in copies when they had them competed.

 

[rodi]

Seconding the recommendation for Being Mortal. Very thought provoking about end of life questions - and also aging questions (dignity when you are older and need assistance.)

Having observed three close family members in their final days - you need to make sure the person you choose to be your voice if you can't be someone who will honor your wishes. My mother actually extubated herself so she could voice that she was ready to go. My dad was in the no extreme measures camp and we made sure they did not put in a dialysis port or put him on a vent. (He was in a coma so he couldn't talk). My brother was in the "every aggressive treatment you can think of" camp... we advocated that they keep doing surgeries and treatments. (He was on a vent so he couldn't talk.) My brothers situation made my advanced directive decisions very clear (and opposite of his).

 

[Octogirl]

NOt a dumb question

Its not a dumb question to ask about advance directives. Glad you are thinking about it

I work in healthcare and without an AD (Advanced directive), the hospital has no option BUT to keep you alive.
Agree with others re Being Mortal by Gwande - the book or the movie (see link)

MOst important is choosing your health care power of attorney (POA).
That person should be familiar with your wishes, values, and have the guts to carry them out.
My DH has said he does NOT want to make difficult health decisions for me, so I've asked my sister. We have similar experiences and views on end of life care.

Good luck

 

[nwsteve]

Can you make an appointment with your PCP to review unfamiliar medical terminology or procedures?
When I was working, reviewing advanced directives or a POLST was part of our requirements for insurance companies for clients 65 and over.
We did not have clients make/choose/or sign while in office, just review what things meant as best we could, and advised them to review with family members or an attorney.
Then we would request they bring in copies when they had them competed.

I cannot quote a source, but I believe Medicare actually pays for a PCP to advise you on your POLST. When I changed providers after moving, my new doc had the "green" form in hand to review with me and sign if I knew what I wanted.
In our CCRC, our local fire dept is trained to look for the green form which is put in a heavy-duty vinyl envelope in your freezer. It is my impression that this is a standard protocol for many emergency responders.

 

[badatmath]

Thanks guys, I got away from this yesterday but will be checking into the new recommendations as well.

Not 65 but interesting that Medicare provides help.

I don't have much family so not concerned anyone going to fight over what to do but never really know.

 

[blueskyk]

Here are some additional books that are helpful on the subject:

The Art of Dying Well: A Practical Guide to a Good End of Life (Katy Butler)

A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death (BJ Miller)

 

[badatmath]

Thx!

 

[old medic]

This must be the dumbest question I ever asked since I usually get more answers. Oops.

Not at all, and it can be a very confusing subject... and rules vary between states.
Advance Directives, Living Wills, Declaration for a desire of a nature death... these are some of the ones I have been given over the years... and legally I could NOT accept them, and had to do everything possible. ORIGINAL DNR/MOST forms only, Copy's wont work. They also have to be present...and given to the medical team. More than once have been where they are inaccessible, locked in a safe, or a safety deposit box, or another family member has them.
DNR- Do Not Resuscitate. this only applies if your heart stops and you need CPR...
POLST/MOST form you can discuss with your family and Dr. do you want to be on life support, a ventilator, Tube feeding antibiotics, meds?
AD- these generally can only be excepted by the Dr, generally your already in the hospital or nursing home.

From the pre hospital view, If you have a major medical issue at home, Ambulance arrives and the crew must do everything possible regardless of the situation or your families wishes. If you have a MOST saying no Ventilator, we would manually support your breathing and transport you for further treatment.

Personal story... My grandfather collapsed at home... 94 years old... His niece visiting starts CPR, and grandma calls 911... they arrive and just take over... NEVER ASKED ABOUT A DNR, yes he had one... they got him back... he laid in a coma on a ventilator for 4 days while the family decided to stop the vent.

 

[pacergal]

My Dad had his bright Pink POLST clipped to the refrigerator. We reviewed it with his DR and all 4 of us siblings. His Dr had a copy, as did the local hospital. Each time we had to call the ambulance, we gave it to the paramedic/firefighters.

If you have very specific plans, the easier and more accessible they are, the better. And let every one know, not just your health care POA.

Your AD or POLST can be changed at any time, if you wish too, or change your mind about a choice you made.

DH and I also found a specific Dementia clause that we printed and filled out, separate from our Advanced Directive. I think I found it via the Compassionand Choices.

 

[Taxman59]

Google Karen Ann Quinlan.

I was an estate planner and trust officer for a wealthy family, and this was my explanation for everyone. I didn't care what you wanted, JUST DOCUMENT IT!!! My FIL wanted everything possible done to keep him alive and therefore refused to have an advanced directive. I told him to just put his request in writing and it would be followed without any family fight. If he wanted to change it later he could at any time. Most people just don't want to think about it. I discussed the various treatments available in the ICU with my ICU Nurse sister over several drinks in a bar one night. When she got home, she wrote out what she remembered, and we had another discussion over the phone. At that point, she agreed to be the health care power of attorney.

 

[ExFlyBoy5]

Lots of good information here but keep in mind that different states have different laws, so research that carefully.

I thought I had a pretty good idea on the laws in Georgia (especially when it came to DNRs) but learned A LOT when my Dad was put into at-home hospice. The #1 rule of the hospice was to NOT CALL 911 for a medical emergency as that could very well complicate things...even with binding DNRs posted all over the house.

 

[Dog]

Its not a dumb question to ask about advance directives. Glad you are thinking about it



I work in healthcare and without an AD (Advanced directive), the hospital has no option BUT to keep you alive.

Agree with others re Being Mortal by Gwande - the book or the movie (see link)

MOst important is choosing your health care power of attorney (POA).

That person should be familiar with your wishes, values, and have the guts to carry them out.

My DH has said he does NOT want to make difficult health decisions for me, so I've asked my sister. We have similar experiences and views on end of life care.



Good luck

Thank you for sharing. It really makes me think about how my parent’s last days/weeks could have been very different. They didn’t have a fatal disease, just chronic issues that shortened their lives. We couldn’t put a number on days left, but could have been more aware that their actual days with the ability to live out any last wishes were numbered. Again, thank you for sharing.

 

[braumeister]

In our CCRC, our local fire dept is trained to look for the green form which is put in a heavy-duty vinyl envelope in your freezer. It is my impression that this is a standard protocol for many emergency responders.

In my mother's case, the docs were in a large test tube attached to the outside of the refrigerator. That was the standard in Ohio, at least back then.

Another point, although it may not be common. As my mom approached the end, I had a long conversation with a "palliative care nurse" at the local hospital that enlightened me about many things. In retrospect, I would have paid quite a bit for that conversation if I had known how valuable it would be to me. Something people might consider looking for, if available.

 

[aja8888]

In my mother's case, the docs were in a large test tube attached to the outside of the refrigerator. That was the standard in Ohio, at least back then.

Another point, although it may not be common. As my mom approached the end, I had a long conversation with a "palliative care nurse" at the local hospital that enlightened me about many things. In retrospect, I would have paid quite a bit for that conversation if I had known how valuable it would be to me. Something people might consider looking for, if available.

My highlights above. I guess I am dense, but just what do you mean by this sentence?

 

[braumeister]

I just meant that a palliative care nurse can be a very valuable resource for information, if you can find one in your area.

 

[aja8888]

I just meant that a palliative care nurse can be a very valuable resource for information, if you can find one in your area.

Ok, thanks.