When patients take time to document their health care wishes—before a crisis—physicians and families are better equipped to honor 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-care planning allows patients to outline what matters most to them if they become unable to communicate their choices, yet research shows that only about one-third of adults in the U.S. have completed advance directives. Through advance directives—legal documents such as living wills or durable powers of attorney for health care—people can designate someone to make decisions on their behalf and specify the treatments they do or do not want. These conversations are essential to ensure care aligns with patients’ values and to reduce the emotional burden on loved ones.
The AMA’s What Doctors Wish Patients Knew™ series gives physicians a platform to share what they want patients to understand about today’s health care headlines.
For this installment, Susan E. Nelson, MD, system 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 a living will and health care power of attorney.
Ochsner Health is part of the AMA Health System Member Program, which provides enterprise solutions to equip leadership, 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 power of attorney, 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 contact.”
The second is a living will, which “outlines the general plan of care as well as the ‘line in the sand’ regarding 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 a mental health treatment declaration.”
Separate from these advance directives and health care documents are financial instruments relating to your personal finances. These include “a will, which determines who inherits your assets, and a financial power of attorney that grants someone access to your financial accounts,” Dr. Nelson said. “These documents really help people navigate life’s journey.”
Each state has different laws
“Some people go to an attorney and get one comprehensive document that includes everything, but a health care power of attorney and a living will don’t necessarily require an attorney,” said Dr. Nelson. “In some states, these documents only need to be notarized.
“In others, they just need to be witnessed by two people who are not related to you or financially benefiting from your death,” she added.
Beyond the health care power of attorney and living will, there are the “POST, MOLST, MOST or POLST documents, which are portable medical orders for patients in the face of serious life-limiting illness or frailty,” Dr. Nelson said. “In some states it’s called the 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 share a common purpose: ensuring that medical orders align with patient preferences,” she said.
It's not about who you favor more
Patients often have misconceptions about advance directives and end-of-life care planning.
“For example, they might mention a burial policy, but as physicians, we don’t need to know about that,” Dr. Nelson noted. “Advance directives are about what happens between today and the day—whatever your belief system is—the angels come to get you.”
“One common challenge is selecting a health care power of attorney. If you have multiple children, you might hesitate to choose one because you don’t want to seem like you’re favoring one over another,” she said. “But it’s important to choose the person who is the most responsible and capable of making decisions in a crisis.”
“Without naming a health care power of attorney, multiple children may legally share the decision-making responsibility, which can lead to disputes and delays in care,” Dr. Nelson explained. “That’s why it’s crucial to identify someone and an alternate or two who will consult with siblings but ultimately make the necessary decisions.”
Make your advance directives accessible
“At Ochsner Health, we store advance directives in our electronic health record,” Dr. Nelson said. “We’ve also partnered with MyDirectives, a national company that uses health-information exchanges to keep these documents accessible and portable.”
Emphasizing the importance of having copies readily available, she urged patients to “take a picture of your documents and save it in your phone’s notes or email it to your children. Some people will even keep a USB drive with a PDF of their documents on their keychain.”
“Beyond digital storage, physical copies should also be accessible,” Dr. Nelson advised, noting “you can keep copies in your glove box, on your fridge 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 is no reason to delay—regardless of your age or health status.
“It’s importance to designate a health care power of attorney,” Dr. Nelson said, “someone you trust and who knows you well enough to make decisions on your behalf.”
“Even younger people should plan for unexpected events, such as a car accident with a severe head injury,” she said.
Have conversations early
“Each state has an order of decision-makers under law, but many people are unaware of their designation or may not want the responsibility,” Dr. Nelson said. “That’s why it’s better to have these conversations early and document your preferences.”
“You can include resuscitation preferences, ventilation, feeding tubes 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,” Dr. Nelson suggested. “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. That is why it is important to review and update your documents regularly. Dr. Nelson recommended reviewing and updating advance directives annually, ideally around your birthday.
“At Ochsner, we’re integrating 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 OK 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 care power of attorney at any time,” she said.
Physicians are there to help
“Sometimes decision-makers worry that they’ve made the wrong choice and feel survivor’s guilt,” Dr. Nelson said. “As physicians, we should reassure them and provide medical expertise and recommendations to help them navigate these moments.”
“Advance care planning is a gift to yourself and your loved ones,” she said. “By documenting your wishes, you ensure that your care aligns 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.”
