When patients take the time to document their health care wishes – before a crisis – doctors and families are better equipped to meet their goals. Yet many adults have never discussed serious illness and end-of-life care planning or completed advance directives, leaving critical decisions to be made by loved ones in moments of stress or uncertainty.

Advance planning allows patients to outline what matters most to them if they become unable to communicate their choices, but still research shows that only about a third of adults in the United States have completed advance directives. Through advance directives – legal documents such as living wills or durable powers of attorney for health care – people can appoint someone to make decisions on their behalf and specify the treatments they do or do not want. These conversations are essential to ensure that care is consistent with patients’ values ​​and to reduce the emotional burden on caregivers.

The AMAs What Doctors Wish Patients Knew series gives doctors a platform to share what they want patients to understand about today’s healthcare headlines.

For this installment, Susan E. Nelson, MDsystem chair of palliative medicine at Ochsner Health and medical director of hospice and palliative medicine for Ochsner Health Network, discusses what patients need to know about advance directives and end-of-life planning such as living wills and health care powers of attorney.

Ochsner Health is part of AMA Health System Membership Programwhich provides enterprise solutions to equip managers, physicians and care teams with resources to help drive the future of medicine.

There are two documents for advance directives

“One is the health care proxy, which is the person who would make decisions for you if you couldn’t make them yourself,” said Dr. Nelson. “Think of it as more than just an emergency switch.”

The second is a living will, which “outlines the general plan of care as well as the ‘line in the sand’ as to how you want to be treated if you have a life-limiting condition,” she said, noting, “additional documents may include a do-not-resuscitate (DNR) order or mental health treatment statement.”

Separate from these advance directives and health documents are financial instruments related to your personal finances. These include “a will, which determines who inherits your assets, and a financial power of attorney, which gives someone access to your financial accounts,” said Dr. Nelson. “These documents really help people navigate life’s journey.”

Each state has different laws

“Some people go to a lawyer and get a comprehensive document that includes everything, but a health power of attorney and a living will don’t necessarily require a lawyer,” said Dr. Nelson. “In some states, these documents only need to be notarized.

“In others, they just have to be witnessed by two people who are not related to you or financially benefit from your death,” she added.

In addition to the health power of attorney and living will, there are the “POST, MOLST, MOST or POLST documents, which are portable medical orders for patients facing serious life-limiting illness or frailty,” said Dr. Nelson. “In some states it’s called Physician Order for Scope of Treatment, and in Kansas and Missouri it’s called TPOPP—Transportable Physician Orders for Patient Preference.”

“Despite the variations, these documents have a common purpose: to ensure that medical orders are consistent with patient preferences,” she said.

It’s not about who you prefer the most

Patients often have misunderstandings about advance directives and end-of-life care planning.

“For example, they may mention a funeral policy, but as doctors we don’t need to know,” noted Dr. Nelson. “Advanced directives are about what happens between today and today – no matter what your belief system is – the angels are coming to get you.”

“A common challenge is choosing a health power of attorney. If you have multiple children, you may hesitate to choose one because you don’t want to seem like you’re favoring one over the other,” she said. “But it is important to choose the person who is most responsible and able to make decisions in a crisis.”

“Without naming a health power of attorney, multiple children can legally share decision-making responsibilities, which can lead to disputes and delays in care,” explained Dr. Nelson. “That’s why it’s crucial to identify someone and an alternate or two who will consult with the siblings but ultimately make the necessary decisions.”

Make your advance directives available

“At Ochsner Health, we store advance directives in our electronic health record,” said Dr. Nelson. “We’ve also partnered with MyDirectives, a national company that uses health information exchanges to keep these documents accessible and portable.”

She emphasized the importance of having copies readily available, encouraging patients to “take a picture of your documents and save it in your phone’s notes or email it to your kids. Some people will even keep a USB drive with a PDF of their documents on their key ring.”

“In addition to digital storage, physical copies should also be available,” advised Dr. Nelson, noting “you can keep copies in your glove box, on your refrigerator in a manila envelope, or share them with your designated decision makers.”

Don’t wait until it’s too late

When it comes to creating advance directives, there’s no need to delay—regardless of your age or health condition.

“It is important to appoint a health care proxy,” said Dr. Nelson, “someone you trust and who knows you well enough to make decisions for you.”

“Even younger people should plan for unexpected events, such as a car accident with a serious head injury,” she said.

Have conversations early

“Each state has a number of decision makers under the law, but many people are unaware of their designation or may not want the responsibility,” said Dr. Nelson. “That’s why it’s better to have these conversations early and document your preferences.”

“You can include resuscitation preferences, ventilation, tube feeding and more in your advance directives,” she said. “But you have to talk about it.”

For example, “using family gatherings, such as Thanksgiving, as an opportunity to discuss these plans,” suggested Dr. Nelson. “That’s how my mother brought it up to us.”

Review your documents every year

Life changes, such as marriage, divorce, a new diagnosis or moving to a new area, can shift values, priorities and needs. It is therefore important to review and update your documents regularly. Dr. Nelson recommended reviewing and updating advance directives annually, ideally around your birthday.

“At Ochsner, we integrate reminders into our system to encourage patients to review their documents during their birthday month,” she said. “It’s a good time to reflect on what matters most.”

It’s okay to change your mind

While advance directives are “easy to create and share,” said Dr. Nelson, “no decision is written in stone.”

“You can change your mind or update your health power of attorney at any time,” she said.

Doctors are there to help

“Sometimes decision makers worry that they made the wrong choice and feel survivor’s guilt,” said Dr. Nelson. “As physicians, we should reassure them and provide medical expertise and recommendations to help them navigate these moments.”

“Advanced care planning is a gift to yourself and your loved ones,” she said. “By documenting your wishes, you ensure that your care is consistent with your values ​​and relieves your family of the burden of making difficult decisions during a crisis.”

“Don’t wait,” said Dr. Nelson. “Start the conversation today.”