Epilepsy Talk

Advance Health Care Directives and Living Wills | November 13, 2020

Most people don’t want to think about death and dying — so they don’t.

Until they have to.

Unfortunately, that often means that families are left struggling with difficult decisions about important matters, such as whether or not Mom would like to be kept alive using a ventilator, or who should be in charge of managing Dad’s financial affairs, because Mom or Dad never made clear what they wanted for themselves.

Advance directives are important tools for anyone to have, because even the healthiest person could experience a sudden accident and not be able to speak for herself.

But when you have a life-threatening illness, it’s particularly critical to make clear, in writing, what your wishes are, should the time come when you can’t express them yourself.

Living wills and other advance directives are written legal instructions, regarding your preferences for medical care if you are unable to make decisions for yourself.

Advance directives guide choices for doctors and caregivers if you’re terminally ill, seriously injured, in a coma, in the late stages of dementia or near the end of life.

By planning ahead, you can get the medical care you want, avoid unnecessary suffering and relieve caregivers of decision-making burdens during moments of crisis or grief.

You also help reduce confusion or disagreement about the choices you would want people to make on your behalf.

Advance directives aren’t just for older adults. Unexpected end-of-life situations can happen at any age, so it’s important for all adults to prepare these documents.

Advance Health Care Directives

An advance health care directive, also known as living will, personal directive, advance directive, or advance decision, is a legal document in which you specify what actions should be taken for your health if you are no longer able to make decisions for yourself because of illness or incapacity.

When you are incapable of making your own medical decisions, a health-care proxy can act on your behalf to make decisions consistent with and based on your stated will.

Each state has its own form for advance directives, giving you questions to answer and specific things that you can choose to accept or reject, but you can always add additional information about your wishes if the form does not include everything you’re concerned about.

An AHCD gives you the following options:

1. You can appoint an agent who has power of attorney to make care and treatment decisions on your behalf, and give instructions about your health care wishes.

2. You can give detailed instructions about your health care wishes.

3. You can do both: appoint an agent and give detailed instructions.

You should consider how you want to live during a terminal illness, and what your end-of-life preferences are when creating a health care directive or living will.

It’s not easy to bring up the subject of dying (especially if it’s your parent you’re caring for).

But you, the individual, and the rest of the family will gain some peace of mind if you can get him to start thinking and talking about this subject, and eventually to execute documents that set down their wishes.

One way many people get this discussion started is by showing the person the advance health care documents they’ve prepared for themselves.

This both breaks the ice and gives the person a model on which to base his own documents.

The job is to get them thinking about what will be important to them when incapacitated, and particularly when they’re dying, such as where they want to be — at home if possible, or in a hospital — and what treatments (particularly life-prolonging ones) they want and doesn’t want (Like a DNR — a Do Not Resuscitate Order.)

He also needs to think about who he wants to make decisions for him if and when he’s unable to do so himself.

The person should discuss these things with family, healthcare providers, and trusted advisors who will help him consider his wishes, options, and fears.

But remember that a conversation doesn’t have the same legal force as an advance health care directive or similar written document, even if a doctor records it.

In most states, only a written, signed, and witnessed advance health care directive must legally be followed by healthcare personnel and institutions.

You should carefully consider whom you want to serve as the agent to make decisions for you and support your choices when creating a health care directive or living will.

The agent or the person chosen for the advance care directive should have several qualifications:

The job can be emotionally difficult, so it should go to someone who cares deeply about your welfare.

It should also be someone who is likely to be able to remain physically near during a prolonged healthcare crisis.

And it should be someone who has a strong enough personality to stand up to family members, doctors, and hospital personnel if necessary.

Sometimes a trusted friend will make more objective decisions, or will follow your wishes more carefully, than a family member.

Whomever you wind up choosing, you have to discuss the responsibility with that person and make sure they’re willing to accept it before naming them responsible.

Living Will

A living will, despite its name, isn’t at all like the wills that people use to leave property at their death.

A living will, also called a directive to physicians or advance directive, is a document that lets people state their wishes for end-of-life medical care, in case they become unable to communicate their decisions.

It has no power after death.

A living will (also called advance directives) frees loved ones from the potentially unbearable burden of wondering, on top of grieving, if they’re doing “the right thing” with your medical care.

It designates the plan of action for your life, or your end of life, based on your beliefs, values and most personal wishes, and ensures that plan gets implemented without guessing or disagreements.

Your living will instruct others what “quality of life” really means to you.

Be very, very specific. Questions you’ll want your living will to answer are:

1. What qualifies as a life for you? What about a “meaningful” quality life?

2. Does artificial ventilation (a machine breathing for you) count as living in your opinion?

3. How much disability are you ok with?

4. How much better would you need to get to want to stay alive?

5. What is most important to you? What is not acceptable to you?

When you do choose a medical power of attorney, you will probably want to put some specific things in writing as to the kind of care you would want, should you not be able to express your wishes directly.

Some things to think about:

1. Do you want all pain relief options available, even if they may have the side-effect of unintentionally hastening your death?

2. Which life-sustaining options — such as tube feeding, mechanical ventilation, CPR, and antibiotics — do you want, and which would you not want? How long would you want these options to be continued if your condition is not improving?

3. Would you want artificial life support removed if you are found to be irreversibly brain-dead, or do you prefer that your life be sustained until your heart stops on its own?

4. What are your feelings about organ donation?

5. How do you want your body to be disposed of after death? (Burial, cremation, medical research?) Which funeral home or other organization do you want to handle the arrangements?

6. It’s a document that lets you state what type of medical treatment you do or do not wish to receive, if you are too ill or injured to direct your own care. (Among other things, you can use it to be sure doctors do — or do not — “pull the plug.”)

The document may have a different name in your state (it’s often called a “declaration”), but you’ll recognize it as the place where you write down your specific wishes about types of medical care.

A Living Will is different from a Power of Attorney:

Both a living will and a durable healthcare POA allow you to choose someone you trust to make certain medical choices on your behalf.

You must be at least 18 to create either document and you must be of sound mind.

That means no one is allowed to coerce you into making a living will or healthcare power of attorney.

But while a living will is generally limited to deathbed concerns only, a durable power of attorney for healthcare covers all health care decisions.

It lasts only as long as you are incapable of making decisions for yourself.

Since a living will generally covers very specific issues, it may not deal with other important medical concerns you might have.

For example, some people may want to refuse dialysis or blood transfusion, and those sorts of concerns can be directly articulated in a healthcare power of attorney.

This is why it’s often a great idea to have both documents in your estate plan.

Who to appoint as your Living Will agent:

While you’ll be responsible for setting out your wishes in your living will form, selecting an agent to enact these wishes when you’re incapable is an incredibly important choice.

In nearly every state, this person will have to be a legal adult, aged 18 or over, and this person will have to act in accordance with your wishes.

That’s a key point: they will not be making your decisions for you (like they might in a power of attorney), but they will need to make certain that your wishes are carried out as you set them down.

That means you’ll want to have a frank discussion with this person before you choose them. Are they comfortable with your decisions?

Do their religious beliefs allow them to carry out your wishes? Make sure you and your agent are on the same page about these issues.

Also, be sure your agent is, above all else, mature and responsible.

Carrying out the healthcare decisions of a friend or family member is no easy task.

Keep in mind you can (and should) select an alternate agent in the event your primary agent cannot be reached or is otherwise incapable of enacting the choices you’ve made in your living will.

When to update your Living Will document:

Living wills are usually updated for the same reasons as a last will and testament, namely after important life and family events.

For example, you may have selected a spouse as your agent but now you’ve now divorced.

Another reason you may need to update your living will is if you’ve moved.

Depending on where you’re settled, some states don’t accept living wills from outside their borders. Some states may require more witnesses when signing, perhaps.

To update your living will, it’s generally advised that you simply create a new one.

The step-by-step living will interview can guide you through the process and the living will form contains language that invalidates your previously legal living will.

What happens if your physician refuses to act on your Living Will:

This is a rare occurrence, but it does happen.

Your physician may have certain ethical or religious reservations about following the choices you’ve laid out in your living will document.

To avoid any issues, it’s best to provide your primary physician with your living will before it’s needed.

Talk through your choices and understand what medical treatments are available.

Make sure your physician is willing to follow your requirements. If not, your physician may be under an obligation to transfer you to a doctor who is.

Here’s Information on Downloading Your State’s Advance Directives


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  1. When I found out I was a candidate for brain surgery, I had my living will taken care of. The near fatal car accident from a seizure a few months before that added to the need.

    Liked by 2 people

    Comment by Ed Lugge — November 13, 2020 @ 12:48 PM

  2. Ed, as always, you’re smart and prepared.

    I know people in their 60s with no medical advance directives and/or living wills.

    Arthur immediately gets access to my doctors (COVID-19 or not), by announcing he’s my health proxy.

    Works every time.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — November 13, 2020 @ 12:51 PM

  3. Benign tumor smashed my amygdala for over 13yrs creating the permanent epilepsy hiccup in life. I’ve had 3 brain surgeries, 2 this year, & they haven’t worked well. Even have a battery but… Staying positive but death preparation is definitely a piece of life I’ve thought of/needed. Thank you for all your posts. They truly help! 💜

    Liked by 2 people

    Comment by Mitchy — November 13, 2020 @ 3:56 PM

    • I think preparation for death is something EVERYBODY needs, once they’re no longer a minor. I mean if you don’t have a parent, guardian, spouse or health proxy and you get into an accident, then what?

      And who’s going to be your advocate when you can’t act on your own behalf?

      When I almost died, my husband was there every step of the way. From the ER, to my first heart attack, to the second, then ICU.

      They told him to call my family (no thanks, they’re a mess) to say good-bye. He made the decision not to. (Not only would I have had a heart attack, I’d have had a stroke if I saw them!)

      But, my fate lay in his capable and loving hands. And that was a comfort in and of itself.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — November 13, 2020 @ 5:15 PM

  4. You did an excellent job on this. My husband and I joined a support group for the elderly that we would visit in the hospital and nursing homes. They had put together a binder that covered the things above and at every meeting we were given tear sheets to add to it.
    These meetings were an eye opener for people who are caregivers and gives one real insight to issues you don’t think about and compassion for the people going through these difficult times. When your a couple, what affects one affects the other. Be Kind and Loving…

    In 1988, my mother died from Lymphoma Cancer that she had for 5 years. She had a medical directive that was given to her Doctors, Attorney’s, and Family. She is one of the scenario’s that you mentioned above.
    As a backup, My mother had written a letter for my dad and I to sign. She said, she trusted us to honor her last wishes and that we would not put her on any form of life support. I respected that and we signed it.

    A week later my mother was hospitalized with severe pneumonia and given 24 hours to live. Had this gone according to God’s plan, she would of died the same day as her mother, who she adored.
    However, my brother who never visited her, showed up at the hospital at the last minute and refused to respect her wishes, accusing us all of wanting to kill her. So, the Doctors would not honor her Medical Directive and they put the decision was back on the family, but, my Dad would not sign the “Do Not Resuscitate” form because he did not want to be responsible for her death.

    There was an emergency board meeting called with my Mom’s Doctors and Attorney’s. They wanted to put her on a ventilator. I was furious, because they all knew how strongly she felt about NOT being on that machine.
    I felt like the timing of her dying was meant to be. I reminded them of her directive and that they all had a copy of her last wish that Dad and I signed.
    But, to protect themselves, the Doctors and Attorney’s decided to put her on a ventilator for a few days to get her over the pneumonia hump and to avoid being sued. I kept asking, Isn’t this life support, for I knew once your on it, you can’t take them off. After repeating the question numerous times and not getting an answer, one Dr. finally replied that it would only be for a few days.
    Dad was speechless as was my sister, and I became the family spokesperson. As for my brother, he never saw her again.

    That 3 days turned into a 3 week ordeal. I visited her daily and the look in her eyes was of utter disappointment and anger. If I could of removed the ventilator I would have, but once a persons on a ventilator you cannot take them off.

    A week later, hours after removing the ventilator, she had continuous grand-mal seizures that were brought on by lack of oxygen. So, they put her back on it for another 2 weeks so she could breathe. This ordeal caused her to have severe brain damage.

    This was an horrific scenario that lasted for 2 years. My dad took care of her till she died. He had to four point her (tied down) to the bed nightly. She could not have conversations, was deaf and hallucinated. She suffered Grand-Mal seizures till she died. This is not living folks, It is living in hell!

    I strongly feel to this day that she had a premonition about this when she asked us to sign her last wish paper.

    Dying is a very difficult decision for families and it is why it is so important to have a directive and make these decisions while we are of sound mind. The discussion itself is emotional, but when we are faced with that decision at the end of of one’s life it is scary for everyone, including the person dying and this is where your faith plays a big role, for you and for them.

    Something to keep in mind is that if ONE family member does not agree, they will NOT honor the directive for fear of being sued. It is important to get all members of your family on the same page.

    The Lesson: Having faith is so important! We do not live forever and death is about the person not you. Find a church and speak with Pastor. I am very Thankful for my faith that has gotten me through many life’s issues.

    God Bless, Doreen

    Liked by 2 people

    Comment by Doreen — November 13, 2020 @ 8:42 PM

    • Doreen, what a heart-breaking yet educational tribute to your mom and how to save someone from unnecessary trauma.

      My mother-in-law had a “good” death. Both of her children were close and on the same page. My husband was her health proxy and executor of her will and my sister-in-law was consulted at every step of the way.

      Mom died at rest, surrounded by those who loved her. (I was tickling her toes and didn’t even know she was dead!)

      Conversely, my auntie’s story was a horror show.

      She tried to commit suicide and failed. Ended up in the ER, where they were obliged to “save her life” with her power of attorney two hours away.

      My auntie lived. Like your mom, Doreen, she was hooked up to a ventilator but (happily for her) stayed in her coma while her son and daughter argued whether to “pull the plug” or not.

      It turns out her son was married to a very religious woman who felt it was a sin to both commit suicide and/or to aid someone in ending their life.

      Everyone is entitled to their own beliefs and their own opinions, but this was not HER life. It was the life of someone she didn’t even like.

      For three months, the family (including her sister who was her healthy proxy and power of attorney) sat and watched my auntie’s nails turn into talons, her body shrivel up, her hair fall out.

      She would have been horrified. She was a very beautiful and vain woman. Which might not sound like much to you. But to those who are body worshipers, it means a great deal.

      Eventually, her heart gave out. I knew because, three states away, I drove off the road.

      I didn’t have to end this way. But with the loves, hates, principles, and personalities involved, that was how the end of my auntie’s life unraveled.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — November 13, 2020 @ 10:08 PM

  5. I was raised by all my old people. Through the process of everything I/we have gone through it left me realizing at a VERY YOUNG AGE that MY HUSBAND AND CHILDREN WILL NEVER EVER GO THROUGH THAT BECAUSE OF MY NEGLIGENCE TO LOVE THEM ENOUGH AND THEREFORE MY FIRST ACTIONS WAS TO ENSURE I WROTE A LIVING AND DYING WILL!!!!!!! And so did husband!! For the love of eachother and our children we made warn sure it was legal and every child and each had a copy as well!!!!! We’ve pre sat with our bank manager, lawyers and one another to make sure everyone was on the same page in my little family!!!!!!! Of course being who we are in our culture OUR BIOLOGICAL REPRODUCERS AND EXTENDED FAMILIES WERE NOT HAPPY AT ALL!!!!!!! But in the end based on our past experience we had to do that for one another and the love of eachother no matter what anyone has to say!!!!!!! Of course over the years it gets adjusted with our ages and as long as we all know “IN OUR HOME” and everyone has a copy of our wills (living and non living) we can live happily confident we made sure to cover our children’s and eachother’s futures!!!!!!! With no interference from outside forces. 🙏🏼🦅🦬😇❤️😇🦬🦅🙏🏼😘😘😘😘😘😘😘

    Liked by 1 person

    Comment by Kathy S.B — December 8, 2020 @ 2:19 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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