Do you have questions about Living Wills or Advance Directives? Ask our Expert.

[AARPTeri]

AARP Expert: Caregivers Series:  Week 2:  Living Wills/Advance Directives, March 11-17

Welcome to week two of our four week Caregiving Expert Series here in the AARP Online Community, Caregiving Forum.  Our AARP Expert, Amanda Singleton , is here to help with Legal and Financial questions you have as a Caregiver.

This week’s topic is Living Wills and Advance Directives

A living will goes into effect when you are no longer able to make your own decisions. A medical power of attorney is the advance directive that allows you to select a person you trust to make decisions about your medical care if you are temporarily or permanently unable to communicate and make decisions for yourself

Do you have questions about living wills and advance directives?  Let us help you find answers.

[m679319k]

I have a POLST from California and recently moved to Texas. Do I need to make changes or update it because of the move? Thanks

[AmandaSingleton]

Hi @m679319k  and thank you for your question. Because you have a POLST, I gather that you have an illness at this time. My heart goes out to you and I hope that you are receiving the best medical care and comfort possible.

For those who are not familiar, a POLST is a Physician's Order for Life Sustaining Treatment. It is a document for people with advanced illnesses that specifies the type of care they would like in an emergency situation. Because it is a "Physician's Order," a physician or medical professional is the one who signs this document along with the patient making it.  These are not the same as advance directives, which are legal documents.   Think of POLSTs like medical orders. 

I say this a lot here, but it bears repeating that every state has its own rules and practices. Many states have documents that are conceptually similar to the POLST, but may go by a different name (MOST, MOLST, POST, SMOST, SAPO, etc.). You now live in Texas, so it may be worth your while to do a refresh of all your documents (both your advance directives and your medical orders). Consult with your medical providers on this point.  In the meantime, here are some resources that may be helpful:

Here are the AARP free advance directives for the State of Texas.

Here is an AARP article that provides more information about POLSTs.

Here is the Texas Department of State Health Services webpage that discusses its laws, and provides links to advance directives and the Texas Out-of-Hospital Do Not Resuscitate Form.

Here is the POLST.org webpage, which includes state-by-state information.

Thank you, and please check in on the Caregiving Forums to let us know what you decided and how you're doing.    Until then, take care.

[YvonneL211944]

What is the difference between a living will and a POLST? I live in Nevada and have seen both forms.

[AnitaL834850]

Is it possible to get a will form for Oregon from AARP that we can just fill out and have notarized?

[AnitaL834850]

I have an advanced directive and it is great. Oregon does have forms for those that cover all those scenarious and really make you think about what you really want if you are incapacitated. That form was easy to get. So yes I am looking for a similar form for my "will". I do have property and some assests and want to delegate who gets what. I am single with one grown son, but I have other people and a couple of charities I would like to leave something of what I have left when I die. Is this possible to do without a lawyer?

Is this possible to do with an AARP expert? I know in Oregon you can hand write a will and have it notarized to be legal but I am not trusting that I will cover all the bases correctly. I have been to a lawyer once for estate planning. Payed $150 just for an inital consult and found it was going to be hundreds more per hour to actually end up with a will.  

[AmandaSingleton]

Hi @AnitaL834850 , and thank you for your post.  I would urge you to re-consider talking to a professional and perhaps seeking out what services are available in your state (there are many programs that do pro or low bono wills and estate planning).  It can be a small up-front investment, but the benefit to you and your loved ones can be significant.  

Wills are not as simple as knowing who you want to inherit what assets.  You're right to say that all the bases may not be covered by simply filling out a form.  For example, an attorney can work with you on the best ways to leave assets to charities to maximize your gift to them, whether there are deeds that can pass your home directly to someone without need for probate, how to avoid your assets going to creditors instead of your loved ones, ways you can title your accounts now so that they go right to your loved ones when you pass, and countless other ways.   It is possible that probate can be avoided completely and you can squash any possible conflicts among your heirs by way of a well-crafted estate plan.

There are form wills out there, but they generally don't cover the full picture (the full picture including the practical side of how does everything work after you've passed).   I have cases right now that are taking years to sort out because a person used a form from the internet to make a will.   Each and every one of those cases wouldn't exist if they hadn't done that.    

I share this personal story sometimes:  my mother did a will online.   She wanted something in writing after she and my father divorced.  She didn't want to bother me to do it and wanted to avoid any appearance that I was self-serving by writing her will.   I definitely don't think she expected to pass away at age 61.  But, she did.  So, I ended up having to file a probate with the court using a lousy will.  She didn't have much in the way of assets, and if she had planned differently, a probate court case wouldn't have been needed in the first place.  It personally cost me thousands of dollars to get the court case completed, occupied a year of my life, and was incredibly stressful.  I had to jump through legal hoops that could have been avoided with a better will.  A relative came out of the woodwork to ask for money (that didn't exist) because he had "helped" my mother during her lifetime.  That suit got dismissed because that's not a legal request, but I had to deal with it regardless.  It's also when I learned the old saying, "Where there's a Will, there's a Relative."  Oh, the heartburn.  

My mother wouldn't have wanted that for me.  She just didn't know what she didn't know.   I wanted to respect her privacy and autonomy, so I believed her when she said she had a will and "it's all taken care of."   I learned the hard way that it wasn't.

As a lawyer, that story is part of the reason why I began to do probate and estate cases.  I don't want the families I work with to go through what I went through, or anything remotely like it.  Consider the short-term investment to be just as much of a gift to your loved ones as leaving them money when you pass.   In Week 4 of this series, we can start looking at different organizations and programs that assist seniors in making estate plans. 

Thank you, and I am wishing you the best of luck.   

[AmandaSingleton]

Good morning @AnitaL834850  and thank you for your question.  Let's first make sure I understand your question:  are you looking for a "living will" or a "will"?  Here's the difference:  

A "living will" is a document that formalizes your wishes for medical decision making at the end of your life.   If this is what you are looking for, there are many excellent resources available online and yes, AARP offers a state-by-state guide that will bring you to a form that may be used in Oregon.  Here is the link for that page:  https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/

A "will" is a document that formalizes your wishes for how your property will be distributed after you die and names a person (or people) to be the executor/personal representative who can manage your property until it is distributed.  We'll talk more about wills in coming weeks on this forum.  In general, though, form wills are not often suggested because there is a lot that goes into that type of planning.  It's not unusual for my clients to say "I had NO IDEA how much detail goes into this" when we do consultations.  Even if we think our assets aren't much or if we don't own much property, there is always some work that needs to be done to close up a person's affairs after they pass away.  If we can dictate that through thoughtful planning in a way that can avoid probate, reduce possible conflict among surviving family members, and streamline the whole process, then it makes that work so much easier.   

Let us know what you had in mind and we can address your question directly.  Thanks! 

[AmandaSingleton]

Hello @ct8926 and thank you for reaching out.  First, please accept my condolences on your husband's passing.  I am so sorry for your loss.    

This week's series is focused on the topic of advance directives, but we will be discussing all kinds of legal documents in week 4.  Would you be so kind as to reach out again on the week of March 25-29 and we can discuss your question?  

Thank you, and take care.

[GailL1]

MY 1st QUESTION:

Health Care Directives, at least in my state, I assume so in others as well, also gives you the option of having or not certain types of life-sustaining treatments.  Tube feeding is one of these options.

If I specify in my Health Care Directive that I DO NOT want a tube feeding to keep me alive and my appointed Health Care Directive Representative also knows of my wishes - Can a  health care provider or a state force it upon me because of "humanitarian" gestures of not wanting me to starve to death?

An example of this might be in the late stages of Alzheimer disease but there are others as well.

Who has the final say in carrying out your wishes at times like these?  The state or the individual?

[AmandaSingleton]

Hello @GailL1  and thank you for your post.  Let's talk a bit more to see if I understand the scenario you're laying out.  What you're asking is if the government can somehow intervene to force tube feeding on a dying person despite having an advance directive?  Is there a scenario you're thinking of where this has happened?   

There are serious clinical, ethical, and legal implications in the kind of example you're describing and I can't really speak to your question without more facts and information.  The guidelines of an advance directive are what should determine a patient's end-of-life care and this is why they are such an important part of our conversations about living and dying according to our own wishes.   

All fifty states and the district of columbia have laws that legalize the use of advance directives like living wills, health care proxies/surrogates, and durable powers of attorney.  In 1991, the federal government passed the Patient Self-Determination Act that validated all of the states' laws.   These documents allow a patient to receive care that is consistent with their desires.  

Tube feeding is very specifically addressed in many advance directives.  We were talking about the State of Oregon in a post earlier today.  Here is a link to the Oregon Advance Directive.  If you look, you'll see that this advance directive not just addresses tube-feeding, it talks about it under a variety of scenarios (what if the patient is close to death, has an advanced illness, is permanently unconscious, etc.) and gives options like "I do want tube feeding," "I do not want tube feeding," and "I want as the physican recommends." 

It may not be pleasant to think about, but 1/2 of patients lose decision making capacity at the end of life.   Of this half, over 2/3 face choices on specific end-of-life treatment options.   A living will is what speaks for the patient when they cannot communicate about those end-of-life treatment options themselves. 

Despite this, while 92% of people have heard of living wills, only 36% have actually completed them.    My hope is to see these numbers shift in the future as we realize how empowering having a living will can be.   By way of example, last week, Luke Perry passed away at the young age of fifty-two years.  Because he had advance directives in place, his family was able to be by his side and his life was not prolonged when it was apparent there was no chance of recovery.  Without the proper legal documents, it may have been necessary for his family to seek intervention from a court, particularly if family members disagreed about what should have happened with Mr. Perry's medical care.

In short, living wills and advance directives are the tool that allow us to truly be the "captain of our own ship" right up until the time of death, up to and including on decisions such as tube feeding.  

[GailL1]

Gail1 reply to AmandaSingleton in blue

@AmandaSingleton wrote:

Hello @GailL1  and thank you for your post.  Let's talk a bit more to see if I understand the scenario you're laying out.  What you're asking is if the government can somehow intervene to force tube feeding on a dying person despite having an advance directive? 

Yes, the government (state or Federal) or a place where the dying might be being cared for outside the home - Hospice facility, hospital, assisted living, nursing home, speiclalized care facilities.

Is there a scenario you're thinking of where this has happened?   

Here is one example but there could be any number of cases where this could happen, especially as things get worse and they may not be able to swallow or take food or liquids by mouth even when fed by hand:

Kaiser Health News:08/21/2017 - Despite Advance Directive, Dementia Patient Denied Last Wish, Says S...

Imagine having to go through all of this just to carry out the dying person's wishes - Mr. Harris lost again.  The results were posted on March 11, 2018 in the Washington Post - you will have to look it up - I cancelled my subscription.

There are serious clinical, ethical, and legal implications in the kind of example you're describing and I can't really speak to your question without more facts and information.  The guidelines of an advance directive are what should determine a patient's end-of-life care and this is why they are such an important part of our conversations about living and dying according to our own wishes.   

That is the problem, Amanda Singleton - if a person is of sound mind when a living will or health care directive is executed, the very form of allowances - want this/don't want this - of what can and cannot be done is very limited. 

End-of-Life to me, regardless of the cause,  is when I am not really living - having to have others do what I once could do for my daily care - eating, drinking, bathing, talking, moving, thinking.

All fifty states and the district of columbia have laws that legalize the use of advance directives like living wills, health care proxies/surrogates, and durable powers of attorney.  In 1991, the federal government passed the Patient Self-Determination Act that validated all of the states' laws.   These documents allow a patient to receive care that is consistent with their desires.  

Tube feeding is very specifically addressed in many advance directives.  We were talking about the State of Oregon in a post earlier today.  Here is a link to the Oregon Advance Directive.  If you look, you'll see that this advance directive not just addresses tube-feeding, it talks about it under a variety of scenarios (what if the patient is close to death, has an advanced illness, is permanently unconscious, etc.) and gives options like "I do want tube feeding," "I do not want tube feeding," and "I want as the physican recommends." 

It may not be pleasant to think about, but 1/2 of patients lose decision making capacity at the end of life.   Of this half, over 2/3 face choices on specific end-of-life treatment options.   A living will is what speaks for the patient when they cannot communicate about those end-of-life treatment options themselves. 

Despite this, while 92% of people have heard of living wills, only 36% have actually completed them.    My hope is to see these numbers shift in the future as we realize how empowering having a living will can be.   By way of example, last week, Luke Perry passed away at the young age of fifty-two years.  Because he had advance directives in place, his family was able to be by his side and his life was not prolonged when it was apparent there was no chance of recovery.  Without the proper legal documents, it may have been necessary for his family to seek intervention from a court, particularly if family members disagreed about what should have happened with Mr. Perry's medical care.

In short, living wills and advance directives are the tool that allow us to truly be the "captain of our own ship" right up until the time of death, up to and including on decisions such as tube feeding.  

Some families panic and take the dying to the ER - mostly because they cannot handle what is happening and are ill-equipted to carry out a person's wishes, even when they know them.  Doctors are there to save lives - what are they suppose to do in this situation?  I don't know of any ER around here that do "Comfort Care".

NPR 05/26/2017 - Can Comfort Care At The ER Help Older People Live Longer And Suffer Less?

My mother was resusitated even with DNR signs all over her (nursing home) room - but she was out of her room when the event happened.  Deaf since birth and a massive stroke had taken all of her cognitive abilities, global aphasia as well as most of her mobility - 89 years old - total care.

My husband, on the other hand, had a bucket list (daughter's wedding).  Once he participated in that event (to the fullest), he told his oncologist to stop all life sustaining care - I knew his wishes and was with him to the end, as hard as it was.  He died (2) weeks later, here in our home, peacefully - The last thing he said to me before being sedated which was necessary was that he was off to his (next) great adventure (you would have had to know him).

Personally, I think Health Care Directives are only as good as the situation underwhich it can be used.  Otherwise, all bets are off - so much for someone's final wishes.

However, I do carry mine in my wallet.  Maybe I should have it tatooed on my chest.

Thanks for your wisdom but until we as FREE individuals are given more personal rights in this determination - things may still not go as planned.

CNN: My right to death with dignity at 29 - By Brittany Maynard - November 2, 2014

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[AmandaSingleton]

Good morning @GailL1  and thank you for your post.  My condolences on your husband and mother's passings.  It sounds like your husband was wonderful and I am so glad he made it through your daughter's wedding.  People seem to hang in there when there's a big event.  Not always, but it happens frequently.   

I see the links in your post and will read them over relative to your original question and your follow-up post.  Perhaps we can open up this conversation in the general caregiving forums as we'll be moving into other topics next week.  I'd be interested to hear other's experiences and input on the topic as well.

[AARPTeri]

@GailL1   Thank you for your question.  Amanda will be answering these questions next week - March 11-18th.