End-of-life wishes: how to write them so they're followed

Most people know roughly what they'd want at the end. Comfort, people they love nearby, no machines if there's no way back. The hard part is writing it so that a doctor you've never met, at a moment you can't predict, can act on it.

End of life wishes get followed when three things line up: the right document, clear words, and a person with authority to speak for you. This post walks through each. It is part of our guide to what happens if you can't speak for yourself.

Why wishes sometimes aren't followed

Usually the wishes were never written down, or the paper couldn't be found. Sometimes the words were too vague to apply to the situation in front of the doctor.

The National Institute on Aging is honest about this. It says an advance directive is legally recognized but not legally binding. Your doctor and your health care proxy will do their best, but a complex situation may make it unclear what you'd want (NIA).

That is why the NIA calls conversations with loved ones the most important part of advance care planning. The writing and the talking work together.

Step 1: Use the documents doctors recognize

A letter in a drawer is lovely, but a hospital looks for specific forms. There are two, and most people do best with both. Our post on health care power of attorney vs living will explains why they work as a pair.

Washington's statutory directive form is short and asks you to check whether you'd want artificially provided nutrition and hydration in those conditions. It also says you may add other specific directions (RCW 70.122.030). That added space is where your own words go.

Our post on the advance directive covers what to include and how to sign it.

Step 2: Name someone to speak for you

A directive can't cover every situation. A stroke with a chance of recovery, or a surgery decision during a confusing week, may not fit its narrow conditions. The NIA notes that a health care proxy helps you plan for situations that can't be foreseen (NIA).

That person is your medical power of attorney, a role created by a power of attorney document. Your written wishes become their instructions.

Washington law is clear about how they must use them. Before deciding, a surrogate must first determine in good faith whether you would consent if you could. Only when that can't be determined do they decide based on your best interests (RCW 7.70.065).

So every clear sentence you write makes your agent's job easier and your wishes more likely to win. Our post on choosing a medical power of attorney helps you pick the right person.

Step 3: Write words someone can act on

This is the heart of it. Vague phrases feel clear when you write them and turn foggy in a hospital. Clear wishes name a situation, a treatment and a choice.

Neither column is the right answer for everyone. The point is that the right column tells a stranger what you meant.

The treatments worth addressing

The NIA lists the decisions that most often come up near the end of life (NIA):

• CPR, which tries to restart the heart. The NIA notes it is less likely to work for older adults with chronic conditions or a serious illness.
• A ventilator, a machine that helps you breathe through a tube.
• Pacemakers and ICDs. If you have an ICD, the NIA suggests saying what you'd want if a doctor suggests turning it off.
• Artificial nutrition and hydration, through an IV or a feeding tube.

You can also say whether you'd want to try a treatment for a set time, then stop if it isn't helping. Our post on writing treatment preferences in plain language has prompts for each.

Start with what matters most

Before the treatments, write a few lines about your values. The NIA suggests starting there: what matters most to you at the end of life (NIA).

What does a good day look like? Reading the paper, the afternoon walk, recognizing your friends. What would you find unacceptable for the long term?

It also helps to know that declining life support doesn't mean declining comfort. Washington's definition of life-sustaining treatment leaves out medicine and procedures given only to relieve pain (RCW 70.122.020).

Step 4: Sign it properly and get it into your record

A beautifully written directive that wasn't signed correctly can be set aside. In Washington, a directive must be notarized or signed before two witnesses (RCW 70.122.030).

The witnesses can't be related to you by blood or marriage, or stand to inherit from you. They also can't be your attending physician, that physician's employee, or an employee of a health facility where you're a patient. Other states have their own rules.

Then make sure it can be found:

• Give a copy to your doctor. Washington's law says the directive, or a copy, is to be made part of your medical record (RCW 70.122.030).
• Give copies to your health care agent and your backup.
• Hospitals and nursing facilities that take Medicare must note in your record whether you have an advance directive (42 CFR 489.102).
• Carry a wallet card saying you have one and where it is.

Step 5: If you're seriously ill, turn wishes into orders

A directive guides doctors. A POLST is itself a medical order, signed with your clinician, meant for people who are seriously ill or in very poor health. It covers resuscitation, other medical interventions, antibiotics and artificial feeding (Washington State Department of Health).

The Washington State Medical Association puts the stakes plainly. Without a POLST, emergency personnel won't know your treatment wishes, and you will most likely receive all possible treatments (WSMA). Our post on POLST vs advance directive explains who needs one.

What if a doctor won't follow it?

Washington has a process. A physician or facility with a practice that would prevent honoring your directive must tell you or your representative when they learn of it. If you stay, a written plan is prepared and filed with your directive (RCW 70.122.060).

The NIA adds that a provider who refuses on grounds of conscience or institutional rules must inform your proxy immediately and consider transferring your care (NIA). Your named agent can ask for that transfer.

If there's a dispute about who speaks for you, a court can become involved. Our post on guardianship vs power of attorney explains why a signed power of attorney usually keeps that from happening. And hospice and your wishes covers decisions in hospice care.

Keep your wishes current

People often feel differently as time goes on. The NIA suggests updating your living will at least once a year and after any major life event, like a divorce or a move (NIA).

In Washington, you can revoke a directive at any time by destroying it, signing a written revocation, or saying so out loud. A written or spoken revocation takes effect once your attending physician is told (RCW 70.122.040). When you make a new one, give everyone the new copy.

Your wishes about music, visitors and the dog belong in a care plan, next to the formal documents. Kinly members keep theirs on file, with a team on call 24/7/365 that has it in front of them.

Common questions

How do I write down my end-of-life wishes so doctors follow them?

Sign your state's health care directive correctly and name a medical power of attorney. Write wishes that name a situation, a treatment and your choice. Give copies to your doctor and your agent. If you're seriously ill, ask your clinician about a POLST.

Are end-of-life wishes legally binding?

An advance directive is legally recognized, but the NIA notes it isn't binding in every situation. In Washington, a doctor or facility that can't honor your directive must tell you, and a written plan is prepared if you stay. Naming an agent helps your wishes carry weight.

Can I write my end-of-life wishes in my own words?

Yes. Washington's statutory form allows you to add other specific directions, and many people attach a page in their own words. Use clear, concrete language, and keep it consistent with the rest of the form.

Does my health care agent have to follow my written wishes?

In Washington, a surrogate must first decide in good faith what you would want if you could decide. Only when that can't be determined do they decide on your best interests. Clear written wishes give them the answer.

Will refusing life support mean no pain medicine?

No. Washington's definition of life-sustaining treatment excludes medication and procedures given only to relieve pain. You can decline machines and still ask for full comfort care.

Sources

• National Institute on Aging: Advance care planning, advance directives for health care
• National Institute on Aging: Preparing a living will
• RCW 70.122.020: Natural Death Act definitions
• RCW 70.122.030: Directive to withhold or withdraw life-sustaining treatment
• RCW 70.122.040: Revocation of directive
• RCW 70.122.060: Procedures by physician
• RCW 7.70.065: Persons authorized to provide informed consent for patients without capacity
• 42 CFR 489.102: Advance directive requirements for providers (Legal Information Institute)
• Washington State Department of Health: POLST
• Washington State Medical Association: POLST