Most people think they know what a health care directive does.

They imagine one question:

“If I am on life support and there is no hope, do I want the machines turned off?”

That is certainly one issue.

But it is far from the only one.

A comprehensive health care directive can address an extraordinary range of medical decisions: CPR, ventilators, feeding tubes, dialysis, antibiotics, pain medication, surgery, hospitalization, dementia care, experimental treatment, organ donation, pregnancy, hospice, where you want to receive care, and even who should be allowed—or not allowed—to visit you.

And perhaps the most important decision of all is who gets to make decisions when the document cannot possibly anticipate what happens to you.

Because it won’t.

Medicine is complicated. Life is unpredictable. And no estate-planning attorney can draft a checkbox for every medical situation you might encounter.

The purpose of a good advance health care directive is therefore not merely to answer a few end-of-life questions.

It is to give your family and doctors a road map for making decisions when you cannot speak for yourself.

Here are the issues worth thinking about.

1. Who Do You Want Making Your Medical Decisions?

Before deciding what treatments you want, decide who you trust to make decisions for you.

Depending on the state, this person may be called your health care agent, proxy, surrogate, representative, or health care power of attorney.

This may be the most important choice in the entire document.

Your agent may eventually be asked questions such as:

Should we authorize surgery?

Should we transfer her to another hospital?

Should we continue aggressive treatment?

Should we consent to a feeding tube?

Should we begin hospice?

Would she have wanted another round of treatment?

Should we authorize an experimental procedure?

The person you select needs more than your affection.

Your agent should be someone who can understand medical information, ask questions, communicate with doctors, make difficult decisions under pressure, and—most importantly—carry out your wishes rather than his or her own wishes.

Those are not necessarily the same thing.

Your oldest child does not automatically have to be your agent.

Neither does your spouse.

Choose the person most capable of doing the job.

And always consider naming at least one backup.

2. When Should Your Agent’s Authority Begin?

Another question is when someone else should be permitted to make decisions for you.

Typically, your agent’s decision-making authority becomes important when you lack the capacity to make your own medical decisions.

But incapacity isn’t limited to being unconscious.

A person might temporarily lack capacity because of anesthesia, medication, severe illness, delirium, traumatic brain injury, or another condition.

Long-term incapacity may result from advanced dementia, neurological disease, or catastrophic injury.

Your directive should work in situations far beyond the stereotypical permanent coma.

3. Do You Want CPR?

Cardiopulmonary resuscitation sounds straightforward:

Your heart stops.

Doctors restart it.

But CPR is a medical intervention, and its potential benefits and burdens vary dramatically depending upon a patient’s age, health, condition, and circumstances.

A health care directive can communicate your preferences concerning resuscitation.

Some people want every reasonable effort made.

Others would not want CPR if they were terminally ill, severely debilitated, permanently unconscious, or suffering from advanced neurological disease.

Your answer does not necessarily have to be simply:

Always resuscitate me.

or

Never resuscitate me.

You can communicate the circumstances that matter to you.

It is also important to understand that an advance directive is not necessarily the same thing as a medical DNR order. If you want a current do-not-resuscitate order because of an existing medical condition, that is something to discuss with your physician.

4. Would You Want a Ventilator?

If you cannot breathe adequately on your own, mechanical ventilation may keep you alive while doctors treat the underlying problem.

For a temporary illness with a reasonable prospect of recovery?

Many people would say absolutely.

Indefinitely after irreversible catastrophic brain damage?

Some would answer very differently.

That distinction illustrates why “I don’t want life support” is often inadequate.

Perhaps you do want life support if it gives doctors three weeks to treat a reversible condition.

What you don’t want is permanent technological support when there is no reasonable prospect of recovering to a quality of life you would consider acceptable.

Those are very different instructions.

5. What About Artificial Nutrition and Hydration?

One of the most difficult end-of-life decisions can involve artificially provided food and fluids.

Depending upon the circumstances, nutrition or hydration might be provided through a feeding tube, IV, or other medical intervention.

Would you want it?

For how long?

Does your answer change if your condition is temporary?

What if you have an irreversible terminal condition?

What if you are permanently unconscious?

What if you have advanced dementia but are otherwise medically stable?

These are questions worth considering before your family has to answer them at your bedside.

6. Would You Want Dialysis?

If your kidneys stop functioning adequately, dialysis can perform some of their essential work.

Dialysis can be life-sustaining.

But the question, again, is context.

If dialysis is temporarily necessary while you recover from an acute illness, your answer may be very different from your answer if you are dying from another irreversible condition.

A good directive helps your agent understand the goal of treatment, not merely whether a particular machine is acceptable.

7. What About Antibiotics?

People rarely think about antibiotics as an end-of-life decision.

But they can be.

Imagine someone with advanced dementia who develops pneumonia.

Should the infection be treated aggressively?

Should the patient be hospitalized?

Should antibiotics be given at home?

Should treatment focus instead on comfort?

There isn’t one universally correct answer.

The important question is what you would want.

8. Surgery and Other Invasive Procedures

Your agent may be asked to consent to surgery when you cannot.

Perhaps surgery offers a strong likelihood of returning you to your prior level of functioning.

Perhaps it has only a small chance of success.

Perhaps it could extend your life but leave you permanently dependent on intensive care.

Your directive cannot anticipate every operation.

What it can do is tell your agent how you balance:

length of life versus quality of life.

That principle can guide hundreds of decisions that no form could specifically list.

9. How Aggressive Should Doctors Be?

This is one of the most useful conversations you can have with your agent.

Where are you on the spectrum?

“Do absolutely everything medically possible, regardless of prognosis.”

At the other extreme:

“If meaningful recovery is unlikely, keep me comfortable and allow a natural death.”

Or somewhere in between?

Many people fall in the middle.

They want doctors to try.

They want treatment.

They want reasonable chances taken.

But they do not want medical technology used indefinitely merely because it can keep their organs functioning.

Say that.

10. What Does “Quality of Life” Mean to You?

This may be more important than choosing individual treatments.

What makes life worth living to you?

Is it being able to recognize your family?

Communicate?

Think independently?

Eat?

Leave your bed?

Live outside an institution?

Experience your surroundings?

Interact meaningfully with other people?

Some people would accept significant physical disability as long as their cognitive abilities remained intact.

Others would tolerate substantial cognitive impairment if they could still recognize and enjoy their families.

Different people draw the line in different places.

Your agent needs to know where your line is.

11. Permanent Unconsciousness

Many directives specifically address permanent unconsciousness or a persistent vegetative state.

If physicians conclude that you have permanently lost awareness and there is no reasonable expectation that you will regain consciousness, would you want life-prolonging treatments continued?

Would you want artificial nutrition and hydration?

Would you want infections treated?

Would you want mechanical ventilation?

These decisions become much easier for families when the patient has already expressed a preference.

12. Terminal Illness

Suppose you have an incurable and irreversible condition and physicians believe death is approaching regardless of treatment.

Would you want aggressive medical intervention?

Or would you prefer care focused on comfort?

Would you want to remain at home if possible?

Would you want hospice?

Would you want hospitalization for treatable complications even though the underlying disease cannot be cured?

“Terminal” does not automatically answer every medical question.

Your preferences still matter.

13. Dementia Deserves Its Own Conversation

Dementia creates some of the hardest advance-planning questions because a person may lose decision-making capacity while continuing to live for years.

Consider advanced Alzheimer’s disease.

You no longer recognize your spouse or children.

You cannot communicate meaningfully.

You require assistance with every activity of daily living.

Then you develop another serious medical problem.

Do you want aggressive hospitalization?

Surgery?

A feeding tube?

Repeated treatment of infections?

Or would you want treatment primarily directed toward comfort?

Traditional living wills have historically focused heavily on terminal illness and permanent unconsciousness. Modern planning should also include a serious discussion about advanced cognitive decline.

14. Pain Medication and Comfort Care

Nearly everyone says:

“I don’t want to suffer.”

Put that philosophy into your planning.

You can express a preference for aggressive pain and symptom management when appropriate, even when medications used to relieve suffering may cause sedation or carry other risks.

Comfort care can involve much more than pain medication.

It may address anxiety, shortness of breath, nausea, agitation, positioning, hygiene, spiritual support, and creating a peaceful environment.

Sometimes the most important medical decision is not how to extend life.

It is how to make the life that remains comfortable.

15. Hospice and Palliative Care

Would you want hospice when curative treatment is no longer achieving your goals?

Would you prefer palliative care to begin earlier, alongside treatment?

Would you rather spend your final weeks at home than repeatedly return to a hospital?

These preferences are worth discussing.

A directive can tell your family not only how you want to die, but also how you want to live during serious illness.

16. Where Do You Want to Receive Care?

If medically feasible, would you prefer:

Home?

Hospital?

Hospice facility?

Skilled nursing facility?

Some people desperately want to remain at home.

Others would rather be somewhere with continuous professional care so family members are not responsible for providing it.

Neither answer is wrong.

But your family cannot honor a preference they never knew you had.

17. Experimental Treatment

What if conventional medicine has failed?

Would you want your agent to pursue experimental treatment?

Clinical trials?

Treatments with significant side effects and uncertain benefits?

Would you travel to another state for treatment?

Would you want every available option explored, or would there come a point where you would prefer to stop treatment?

Your general philosophy can help your agent evaluate options that do not even exist today.

18. Mental Health Treatment

Depending upon your state’s law and the documents being used, advance planning may also address certain mental health treatment decisions.

These can involve psychiatric hospitalization, medications, providers, or other treatment preferences.

Mental-health directives are particularly state-specific, so this is an area where generic online documents can be inadequate.

19. Pregnancy

This is an uncomfortable provision that many people skim right past.

They shouldn’t.

State law may affect whether and how an advance directive can be followed when a patient is pregnant.

If pregnancy is possible, discuss with your attorney what your state’s law says and whether your document should contain specific instructions.

It is much better to understand those rules while signing the document than for your family to discover them during a medical crisis.

20. Organ and Tissue Donation

Do you want to be an organ donor?

What about tissue donation?

Corneas?

Donation for transplantation?

Medical research?

Education?

You can often specify whether you want to donate:

anything medically useful

or only particular organs or tissues.

Your estate-planning documents, driver’s license designation, donor registry information, and family understanding should be consistent where possible.

21. Donation of Your Body to Medical Science

This is different from ordinary organ donation.

Some people want their bodies donated to a medical school or research institution.

If that is your preference, advance arrangements may be necessary.

Do not simply write “donate my body to science” and assume someone will figure it out later.

Programs have eligibility requirements, procedures, geographic restrictions, and circumstances in which a donation may not be accepted.

Have a backup funeral or disposition plan as well.

22. Autopsy Decisions

Depending upon state law and the circumstances of death, an autopsy may be legally required and outside your family’s control.

In other situations, your agent or family may have a choice.

Would you permit an autopsy?

Would you want one if it could provide medically useful information to your children?

Do religious or personal beliefs affect your preference?

This can be addressed as part of broader end-of-life planning.

23. Who Gets Access to Your Medical Information?

Your health care agent needs information to make decisions.

That means your estate plan should address medical-information privacy and HIPAA authorization.

You may want more people authorized to receive information than you want empowered to make decisions.

For example:

Your daughter may be the sole health care agent.

But you may want all three children permitted to speak with doctors and obtain information.

Those are different powers and can be handled differently.

24. Who Should Not Be Involved?

Sometimes planning is as much about exclusion as authorization.

Is there someone you specifically do not want making medical decisions?

Someone you don’t want receiving medical information?

Someone you don’t want at your bedside?

Family relationships can be complicated.

If there is a serious concern, do not assume everyone will simply understand what you would have wanted.

Discuss it with your attorney and make the documents clear where legally appropriate.

25. Visitors and the People You Want Around You

Who counts as family?

The answer isn’t always determined by a family tree.

You may have an unmarried partner, lifelong friend, former spouse, stepchild, or other person who is extremely important to you.

If you want that person involved during a medical crisis, your documents should reflect it where appropriate.

This can be particularly important when there is potential disagreement among relatives.

26. Religious and Spiritual Wishes

Your medical preferences may be influenced by religious, spiritual, cultural, or deeply personal beliefs.

You may want:

• clergy contacted;
• particular prayers or rituals;
• restrictions on certain procedures;
• particular end-of-life practices; or
• spiritual support.

Write those wishes down and discuss them with your agent.

27. What Happens to Your Body After Death?

Technically, this crosses from health care planning into disposition and funeral planning, and state law determines who has legal authority.

But it belongs in the same conversation.

Do you want:

Burial?

Cremation?

Green burial?

Donation?

A traditional funeral?

No funeral whatsoever?

Do you already own a cemetery plot?

Have you prepaid arrangements?

Your family should know.

The Most Important Part Isn’t the Checkbox

After reviewing all these decisions, it is tempting to turn a health care directive into a 40-page questionnaire.

That misses the point.

You cannot predict every disease.

You cannot anticipate every medical technology.

You cannot decide today whether you would accept a treatment that will not be invented for another 20 years.

What you can do is give your agent a framework.

Tell them:

What makes life meaningful to me?

What outcomes would I find unacceptable?

How much uncertainty am I willing to tolerate?

When would I want doctors to keep fighting?

When would I want them to stop trying to cure me and concentrate on keeping me comfortable?

Those answers can be more useful than 100 checkboxes.

Give Your Agent Permission to Let You Go

There is one conversation that families frequently avoid.

If this reflects your wishes, tell your agent:

“If the doctors believe I am not going to recover in a way I would find meaningful, you have my permission to choose comfort care. You do not have to keep me alive because you are afraid of feeling guilty.”

That can be an extraordinary gift.

Your child should not have to spend the next 20 years wondering:

“Did Mom want me to keep trying?”

Your spouse should not have to guess whether stopping treatment means giving up on you.

Your health care directive can answer the legal questions.

Your conversation can answer the emotional ones.

Don’t Just Sign It. Talk About It.

A health care directive sitting in an estate-planning binder that nobody knows exists is considerably less useful than a directive your family understands.

Once your documents are completed:

Give appropriate people copies.

Tell your agent where the original is located.

Make sure your physicians have relevant documents when appropriate.

Review the directive periodically.

And most importantly, talk to the people you have chosen.

You do not need to have every medical answer.

You simply need to give them enough information to answer one question when you no longer can:

“What would she want us to do?”

That is ultimately what a health care directive is designed to accomplish.

It is not just about whether someone turns off a machine.

It is about making sure that, when you lose your voice, the people you trust still know what you would have said.

This article is for general educational purposes only and is not legal or medical advice. Advance directive, health care proxy, living will, DNR, POLST/MOLST, mental-health directive, pregnancy, organ-donation, and disposition laws vary substantially by state. A health care directive should be prepared in accordance with the law of the applicable jurisdiction and discussed with your attorney, physicians, and chosen health care agent.