Epilepsy Talk

Advance Health Care Directives and Living Wills | December 22, 2021

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

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.

Also called a directive to physicians or advance directive, it 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 Living Will Forms and Estate Planning (By State)

To subscribe to Epilepsy Talk and get the latest articles, simply go to the bottom box of the right column, enter your email address and click on “Follow”












  1. Reblogged this on Ken's Devotions.


    Comment by Kenneth — December 22, 2021 @ 8:41 AM

  2. This is a great article & post. Just have to wonder though if a number of people with epilepsy have donated their total body or just their brain for medical research & has that been done many times or a few times over the past 100 years. I would not donate nothing today to N I H knowing now today how much evil & wicked politics are involved with covid or anything else and other clinical research places are not much better especially if their practices & studies are all under those same rules & regulations of the NIH. DO NOT GET DECEIVED BY ANY OF THEM. They all are under the same treatments of NIH or MAYO CLINIC or JHU protocols that gets approved by FDA & NIH & CDC. PROOF,, I talked to a frien last evening where her grand daughter who is 6 is taking still LIQUID FORMS of Dilantin & Keppra where when I was 6 I was taking LIQUID forms of dilantin & Meberal, as liquid forms until my 1st neurologist switched me on a pill form at 9 years old. Still DILANTIN is the drug for ALL kids under 10, which I call it the YOUNG BRAIN GROWTH STOPPER, that keeps seizures in a child’s life FOREVER. I am right as I still at age 61 have seizures. IT THEIR JOB SECURITY to put young kids under age 17 on DILANTIN, no matter WHAT SEIZURE TYPES THEY HAVE or I HAD in 1961 & LIQUID FORM AT THAT. What,, kids can not swallow pills to get the same number of MG’s every time a drug gets taken ?

    Liked by 1 person

    Comment by James D — December 22, 2021 @ 9:37 AM

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

    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.

    View Full Profile →

    Enter your email address to follow this blog and receive free notifications of new posts by email.

    Join 3,251 other subscribers
    Follow Epilepsy Talk on WordPress.com
%d bloggers like this: