Only one in three U.S. adults has an official plan in place for end-of-life care, according to research in Life Affairs[ ]. Formalizing these details when you’re able to do so can make a world of difference for you and your loved ones down the line.
Read on to learn about advance directives, including what they are, why they’re important, what challenges may arise and how to ensure your or your loved one’s wishes are in writing so they’re more likely to be honored if and when the time comes.
What Are Advance Directives?
Advance directives are written instructions regarding what a person wants in terms of health treatment and care should they lose the capacity to voice these desires. Samantha Winemaker, M.D., a palliative care physician and co-host of the Waiting Room Revolution podcast, defines advance directives as “an expression of someone’s values and wishes based on what’s most important to them in their life.”
Advance directives were first introduced in the U.S. in 1967 as a component of advance care planning. Reaching a step beyond informed consent, they help people prepare for inevitable and unpredictable life events that can impact a person’s ability to direct their own care. These documents provide space in which patients can wield more power and autonomy in shaping their health care experiences, particularly as it relates to end-of-life care, says Dr. Winemaker.
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Types of Advance Directives
There are several types of advance directives, including (but not limited to) living wills, health care powers of attorney, do-not-resuscitate (DNR) orders and physician orders for life-saving treatment, says Ferdinando Mirarchi, D.O., chief medical officer of the Institute on HealthCare Directives.
Physician orders for life-saving treatment (POLSTs) outline a plan of end-of-life care that reflects the patient’s care preferences as well as their health care provider’s judgment based on a medical evaluation. This advance directive is only valid once agreed upon and signed by both parties.
A living will is a written document that outlines a person’s health care wishes for end-of-life care in the event that something prevents them from voicing their own values, wants, wishes and needs for whatever reason and they cannot make such decisions on their own. Living wills typically tell health care providers what treatments the person does or doesn’t want when the individual no longer has the competency to make such decisions, and some include religious preferences as well.
“They are [written] documents that provide a way to express your wishes if you can’t speak for yourself,” adds Dr. Mirarchi.
A health care power of attorney, also called a health care proxy or health care agent, is someone a person appoints or designates to advocate for them in the event that they can no longer advocate for themselves.
The importance of choosing a power of attorney cannot be overstated. Dr. Winemaker describes the role as a culmination of all the previous conversations they’ve had with the person about what they value and the tradeoffs they’re willing to make. They need to pick what the person they’re advocating for would want and put their wishes in the context of the given situation. A power of attorney is only as good as how well they know their role, says Dr. Winemaker.
Do-not-resuscitate (DNR) orders are medical orders written by a doctor explicitly instructing health care providers not to use cardiopulmonary resuscitation (CPR) should the patient’s breathing stop or heart stop beating. “Depending on the state, these orders can also be written as a cardiopulmonary arrest,” Dr. Mirarchi.
Various guidelines for each of these advance directive documents are outlined in state laws and often templated by specialized attorneys. You may also create similar documents on your own. The more specific a person is with the information they include in an advance directive, the more closely their wishes will be followed when the time comes.
Why Are Advance Directives Important?
Advance directives are essential for patient autonomy. They empower a person to have their wishes honored in the event that they’re no longer able to speak for themselves.
What’s more, the use of advance directives is linked to higher utilization rates of palliative care (health care for people living with a serious illness), reduced stress toward end of life, improved communication between health care teams and patients’ families, and reduced health care costs, according to research in the Journal of Gerontological Nursing.
It’s important to understand the broader context of how advance directives play a role in how people experience health care. “We have to [acknowledge] that 90% of us will end up with some condition that will result in multiple [health care] decisions,” says Dr. Winemaker. “We have to [be ready to] make [these] decisions for ourselves and [others]. It’s not ‘if’— it’s ‘when.’”
Coordinate with your or your loved one’s health care team to keep time on your side, advises Dr. Winemaker. “Don’t put yourself at a disadvantage or work in crisis mode. This is a part of life, and just like with everything else, planning is the best medicine,” she says.
Dr. Winemaker also explains that it’s important for patients to play a more active, consumerist role in their health appointments by expressing person-centered requests.
“The health care system is all about bi-directional sharing—it helps diagnose an illness and treat the illness,” she says. Often, the goal is to keep people going for as long as possible and keep the illness quiet as long as possible. However, quality of life is often superseded by the pursuit of longevity. So, it’s crucial to be open, honest and proactive with your care team so they can make recommendations and treatment plans that best suit your specific situation and personal preferences.
In fact, the point of an advance directive and participating in advance care planning is to go against the health care conveyor belt—you won’t get what you need unless you’re vocal about your wishes, says Dr. Winemaker. Your treatment plan should reflect who you are.
When Should You Make Advance Directives?
There’s no “best” time to file advance directives, but Dr. Winemaker says the sooner they’re in place, the better. And remember care planning is not a one-off conversation, but rather a series of discussions with your loved ones and yourself about what suits you best.
“When you’re healthy, reflect on what movies you watch on Netflix,” suggests Dr. Winemaker. “Think of ‘The Notebook’ or ‘Still Alice.’ What would you do in either of those situations? Think of yourself in multiple scenarios and what you’d want, and share those [details] with people around you as soon as possible.
Meanwhile, there are certain points in life when it can be advantageous to update advance directives, says Dr. Winemaker, which include (but aren’t limited to):
- When you become a partner or spouse
- When you become a parent
- When you lose someone important to you
- When your contact information (telephone number, physical address, email address, etc.) changes
- When your selected health care power of attorney is deceased or you want to select another person in their place
Generally, advance care plans or advance directives should be updated and reviewed annually similar to how you schedule an annual health care appointment with your primary care physician.
When Are Advance Directives Implemented?
Each type of advance directive serves a unique purpose and is implemented in certain situations.
POLSTs are implemented once both the patient and their health care provider agree and sign off on a medical treatment plan as it relates to the person’s current health status.
Living wills go into effect when the person enters any of the conditions listed in their living will document. At this point, the document becomes operative and is followed by all care team members, explains Dr. Mirarchi.
Meanwhile, a health care power of attorney can be utilized at any point in a person’s life when they aren’t able to make a health decision for themselves, be it due to an acute health emergency or progression of a chronic illness.
And DNR orders become active when a person stops breathing or their heart stops beating, at which time the care team isn’t allowed to perform CPR to resuscitate them.
What Happens if You Don’t Have Advance Directives?
Without advance directives, the specific outcomes of your care are more uncertain. “From a health care perspective, there are times when the health care team can act in an emergency in the patient’s best interest, but that’s reactive care—not proactive care,” says Dr. Winemaker. You or your loved one likely wants to be in a position of control over their care, which requires having a plan.
“If it’s not an emergency situation, [the health care team has] to try to find people who are in the person’s life. Ultimately, if a decision needs to be made, they can also go to a higher-level attorney or representative,” explains Dr. Winemaker. There are various contacts the health care system can use to make a legal decision on a patient’s behalf.
Unaware of what a patient wants, the health care team and family members they’re able to contact are often left to make decisions based on what they think they know about the patient. Naturally, a lack of advance directives in such circumstances can cause undue stress and burden for loved ones who, even with good intentions, might make the wrong decisions for the person in need of care.
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Common Challenges With Advance Directives
According to Dr. Mirarchi, one common challenge with advance directives is something he refers to as “medical stranger danger.” Advance directives are documents often written with the help of attorneys and then interpreted by health care professionals, explains Dr. Mirarchi, so it’s not surprising that misunderstandings that can turn into medical errors occur. More specifically, his research shows advance directives can “get prematurely misinterpreted as a DNR order, and DNR orders can get misinterpreted as do-not-treat orders.” However, he adds that while most people in medicine are “medical strangers” to you, your doctors are often people who actually know you well enough to make informed decisions as it pertains to your care.
The goal is for the health care team to make decisions that honor what a person says they want, says Dr. Winemaker. There’s a process to override someone if they’re not making a fit or good decision, but you typically don’t have to escalate a situation to that level. And often, a person’s decision is coming from a good place.
There’s no time like the present to get started on your advance directives if you haven’t already— and encourage your loved ones to do the same. Once you have them in place, remember to review them at regular intervals as well to make sure they still represent your wishes and desires.
