Advance directive for an aging parent What it does, and why the person you name matters most

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An advance directive is a legal document that records a person's medical treatment wishes and names who decides if they cannot communicate. The two most common are a living will and a durable power of attorney for health care.

That definition comes from the National Institute on Aging. Its advance directives page was last content reviewed in October 2022. The same page carries a line worth reading first. An advance directive is legally recognized but not legally binding. Understanding what that means changes which part of this job deserves your attention.

The two most common advance directives

NIA describes the living will and the durable power of attorney for health care as the two most common advance directives. The second of those two is where this article spends most of its time, for reasons that come clear below.

The living will

A living will is a legal document that tells doctors how a person wants to be treated if they cannot make their own decisions about emergency treatment, in NIA's words. It lets them say which treatments they would want, which they would want to avoid, and under which conditions each choice applies. On its preparing a living will page, NIA walks through the decisions that tend to come up:

• CPR. NIA describes it as repeatedly pushing on the chest with force while putting air into the lungs, sometimes with electric shocks and medicines, and says the force can sometimes break a person's ribs. NIA also says CPR is less likely to work among older adults who have chronic medical conditions or are hospitalized with a serious illness.
• Ventilators. A machine that uses a tube in the throat to push air into the lungs. NIA notes that inserting the tube, called intubation, can be very uncomfortable, so medicine is often used to keep the person sedated.
• Pacemakers and implantable defibrillators. NIA points out that an ICD may be turned off if a person declines other life-sustaining measures, and suggests stating in advance what should happen if a doctor suggests it is time.
• Artificial nutrition and hydration. Fluids and nutrients delivered through an IV or a feeding tube. NIA says hand feeding may have fewer risks, especially for people with dementia, and that studies have shown artificial nutrition toward the end of life does not meaningfully prolong life.

The MedlinePlus summary on advance directives, sourced from the National Cancer Institute, frames a living will as covering the treatments a person wants if they are dying or permanently unconscious, and lists dialysis, breathing machines, resuscitation, tube feeding, and organ or tissue donation as the kinds of instructions people include. Everyday medical decisions your parent makes while they can still speak stay entirely theirs.

The durable power of attorney for health care

The durable power of attorney for health care is the document that names a health care proxy. NIA also calls that person a representative, surrogate, or agent, and says they should be familiar with the person's values and wishes. A proxy can be chosen in addition to or instead of a living will.

NIA's reason for naming one is specific and worth reading closely: having a health care proxy helps you plan for situations that cannot be foreseen, such as a serious car accident or stroke. No form anticipates the actual room.

Choosing the proxy carries more weight than the checkboxes

NIA's page on choosing a health care proxy sets out the mechanics. In most states a proxy has to be 18 or older, and in Alabama and Nebraska the age is 19. In all cases a proxy has to be of sound mind. Some people choose a family member, and others pick a trusted friend, a neighbor, or a lawyer.

State requirements vary greatly. NIA reports that the American Bar Association generally recommends not choosing any of the following as a proxy:

• Your health care provider, or their spouse, employee, or employee's spouse
• The owner or operator of your health or residential care facility, or someone working for a government agency financially responsible for your care
• A professional evaluating your ability to make decisions
• A court-appointed guardian or conservator
• Someone who already serves as a health care proxy for 10 or more other people

NIA advises contacting your state legal aid office or state bar association to confirm your state's rules and any other limits on who can serve. It also suggests picking an alternate proxy as a backup. The other suggestion is to ask the person whether they are willing to take on the responsibility before naming them.

For deciding between two candidates, NIA offers questions to sit with. Is your parent comfortable talking with this person about their wishes and priorities for health care? Will this person honor those wishes when the time comes? Do they trust this person with their life? Can this person handle conflicting opinions from family, friends, and health care providers? Does this person live nearby, or would they travel? Where the adult children disagree, the question about conflicting opinions is the one that does the most work.

Legally recognized does not mean legally binding

Here is the sentence that reframes the whole exercise. NIA states plainly that an advance directive is legally recognized but not legally binding, which means a health care provider and proxy will do their best to respect it, and there may be circumstances in which they cannot follow the wishes exactly. NIA gives an example: a complex medical situation where it is unclear what the person would have wanted.

NIA also describes what happens if a provider declines to follow a directive, which can happen when the decision goes against the provider's conscience, the institution's policy, or accepted health care standards. In those situations, NIA says the provider must inform the health care proxy immediately and consider transferring care to another provider. Note who gets that call. The proxy does.

The transfer rule is exactly why NIA treats the conversation as the most important part of advance care planning. NIA also names the cost of skipping it. In one study cited on that page, people guessed nearly one out of three end-of-life decisions for their loved one incorrectly. The form records the answers. The conversation gives the proxy something to work from when a question comes up that the form never asked.

State law fills the gap when nobody is named

Without an advance directive, NIA says the state laws where a person lives determine who may make medical decisions on their behalf. NIA describes that as typically the spouse, the parents if they are available, or the children if they are adults. An unmarried partner who was never named as proxy could be excluded from decision-making. Not everyone has family. Some states then allow a close friend familiar with the person's values to help, or may assign a physician to represent their best interests.

CaringInfo adds that some states provide a specific order or priority for who decides. Others require a health care provider to notify a broader group of family, who are then directed to decide who the decisionmaker will be. Some states have no provision at all. The default is a rule written by a legislature that never met your parent, applied by a hospital that has to act.

Articles about advance directives usually reach for a statistic here about how few seriously ill people have one on file. They use it to argue that a diagnosis is the thing that triggers the paperwork. The pooled data does not support the second half of that. A 2017 systematic review in Health Affairs, Approximately One In Three US Adults Completes Any Type Of Advance Directive For End-Of-Life Care, pooled 150 studies published between 2011 and 2016 covering 795,909 people.

The review found 36.7 percent had completed an advance directive, including 29.3 percent with living wills. The comparison inside it is what bears on a family's timing: 38.2 percent of patients with chronic illnesses had completed one, against 32.7 percent of healthy adults. Chronic illness moved the number by roughly five points, and the review calls those two proportions "similar." Those figures are now several years old. The review covered studies published through 2016, so they read as a benchmark from that period rather than a current count.

The pattern still argues against a common family plan. Waiting for the diagnosis to force the issue mostly produces families who reach the diagnosis without the document. NIA makes the same point from the other direction, saying advance care planning is not just for people who are very old or ill, because at any age a medical crisis could leave someone unable to communicate their own decisions.

For a parent who has recently been diagnosed with dementia, NIA advises encouraging these discussions as early as possible. In the later stages, NIA notes, you may need to work out decisions with other family members, the person's provider, or a trusted friend instead. Our guide on Alzheimer's stages covers what tends to change at each stage, including the earlier window when legal documents are usually still possible.

Getting the form and putting it where it will be found

Little of this requires a lawyer. NIA says a lawyer can help but is not required to create advance directives, and that you can establish them for little or no cost, since many states publish their own free forms.

Where the free forms are

CaringInfo, a program of the National Alliance for Care at Home, provides free advance directives and instructions for each state that open as PDFs and can be filled in online. Its list runs from Alabama to Wyoming and includes the District of Columbia and Puerto Rico. NIA lists other routes to a free form. One is your State Attorney General's office. Another is your local Area Agency on Aging, which you can reach through the Eldercare Locator at 800-677-1116. NIA also names downloads from AARP, the American Bar Association, or the National Hospice and Palliative Care Organization, which has since joined with the National Association for Home Care & Hospice to form the National Alliance for Care at Home, CaringInfo's parent. Veterans can contact a local VA office, which offers an advance directive specifically for veterans.

An out-of-state form is a real complication, though the picture is less absolute than a flat rule suggests. CaringInfo says one state's advance directive does not always work in another: some states honor out-of-state directives, some honor them if they are similar to the state's own law, and some have no answer to the question. Its recommendation for a parent who spends significant time in more than one state is to complete the forms for each of them. NIA gives the same advice.

Signing it correctly

CaringInfo says states vary in their requirements for witnesses, notarization and other specifics, that some states allow online notarization, and that forms should be printed so they can be formalized by witness signatures or notarized where the state requires it. The instructions attached to the state form are the thing to read carefully here, and if anything about them is unclear, a state legal aid office or bar association can answer it.

Storage, which is where good documents die

CaringInfo's guidance on storing and retrieving an advance directive starts from the point that a directive is only as good as its availability when it is needed. It advises making many copies for the person named under the health care power of attorney, the inner circle, and the physician, and keeping the original somewhere safe and easy to find. It says specifically not to put the original in a safety deposit box. It also notes that hospitals frequently ask for an advance directive before admission, so a copy travels with the patient.

For families who want the document reachable from anywhere, CaringInfo names three scanning and retrieval services: MedicAlert, MyDirectives by AD Vault, and the U.S. Advance Care Plan Registry. Some are free to the user and others charge. CaringInfo says the website is worth reviewing before signing up. NIA adds that some states run their own registries. They store a directive for quick access by providers and the proxy.

NIA and CaringInfo agree on review. NIA advises treating advance directives as living documents, reviewing them at least once each year and updating after a major life event such as retirement, moving out of state, or a significant change in health. If a form is replaced, NIA suggests filing the previous version and noting the date it was replaced.

POLST forms work differently from advance directives

A second document sits next to the advance directive: the POLST, which stands for Physician Orders for Life-Sustaining Treatment and goes by POST, MOLST or MOST depending on the state. CaringInfo describes a POLST as a set of medical orders filled out in consultation with a doctor who signs it, covering a limited number of critical medical decisions for a limited population of patients such as seriously ill or frail people.

The distinction CaringInfo draws is about who the document is for: POLST is for people who are seriously ill or have advanced frailty, and if you are healthy, an advance directive is the document for you. CaringInfo also notes that a POLST does not appoint anyone to speak on the person's behalf, which an advance directive generally does, and that POLST forms travel with the patient and are honored by emergency medical technicians. NIA describes these forms as a medical order in addition to an advance directive, typically created near the end of life or during critical illness. It also suggests checking with your state department of health to find out whether they are available where you live.

Our guide to POLST, DNR and advance directives compares the three documents side by side and covers what happens when they conflict. If your parent is already seriously ill, what to expect with hospice care at home covers the team that arrives and what Medicare pays for.

Parents who refuse the conversation

A parent may hear the words advance directive and change the subject. NIA has getting-started advice for that, and it is unglamorous and useful. Start small, be flexible, take it one step at a time, and try simply talking about what your parent appreciates and enjoys most about life. Reflecting on values comes before any form.

The proxy question can be the easier door. Naming a person is a smaller ask than deciding about ventilators. NIA suggests an alternative for someone not ready to discuss specific treatments or care decisions yet. They can talk about general preferences, write a letter, or watch a video on the topic together.

A doctor's appointment is another route, and this one has funding behind it. Medicare says Part B covers voluntary advance care planning as part of the Welcome to Medicare visit and the yearly Wellness visit, and that you pay nothing if the provider accepts assignment and the planning happens during one of those visits. If it happens as part of other medical treatment, the Part B deductible and coinsurance apply. Asking the primary care doctor to raise it at the next annual visit puts the conversation in a room where your parent is already talking about their health, with someone other than their child asking the questions.

NIA lists two free programs built for exactly this. One is PREPARE for Your Care, an interactive online program funded in part by NIA and available in English and Spanish. The other is The Conversation Project, a set of online conversation guides from the Institute for Healthcare Improvement available in English, Spanish and Chinese. If a form from any website is used, NIA advises checking that it is legally recognized in the relevant state. For a parent who shuts the topic down entirely, our guide on the end-of-life conversation a parent avoids works through openings that tend to get further than a direct request.

One practical note from NIA for when the document exists. Some people carry a card in their wallet indicating they have an advance directive and where it is kept.