Living Wills are a statement of preferences for treatment (or, as may be the case, lack of treatment); Advance Directives include that information as well as legally appointing and empowering a person (called a Healthcare Agent) to speak on our behalf if we can’t.
Over time the terms Living Wills and Advance Directives have been used interchangeably, but a Living Will is actually part of an Advance Directive.
While proper terminology is important, what’s even more important is having a valid Advance Directive in place.
The pandemic taught us that sudden illness can befall almost anyone. Accidents happen, even to young, healthy people. In the United States, the default care that will be given, the care that is provided in the absence of our personal input, is the maximum care available. That includes resuscitations, intubations, feeding tubes, and so on. In a 2020 Gallup poll, 25% of U.S. adults said they have been in a situation in which they had to make a decision about whether to remove life support for a family member. In the same poll, 72% of adults aged 65 and older said they have an Advance Directive, as do a slim majority of those aged 50 to 64. A little more than a third of 30- to 49-year-olds have an Advance Directive, and only 15% of young adults do. People tend to think they don’t need one, or resist filling one out (Source: Harvard Health Publishing), but people need to know that in the American health system that means they will receive maximal medical care if they fall seriously or even terminally ill.
What are Advance Directives?
An Advance Directive is a document that both appoints a person to speak for you and contains your preferences for treatment, in cases where you are unable to speak for yourself.
In the United States, there are state-specific Advance Directives, unique to each state. Most of them include a section we would call a Living Will. All of them appoint a person to speak for us when we cannot. This person may be called any of the following terms:
- A Healthcare Agent
- Healthcare Proxy
- Healthcare Surrogate
- Healthcare Attorney in Fact
- Healthcare Advocate
- Healthcare Representative
Advance Directives may also contain instructions around organ donation, appointment of a guardian, and other matters, depending on which state you live in.
What are Living Wills?
A Living Will is information contained within an Advance Directive; it is not a distinct document separate from an Advance Directive. This isn’t always clear because a lot of websites that offer “free legal documents,” incorrectly refer to Advance Directives by the name “Living Wills.”
Living Wills are a statement of the kind of care you prefer if you are not able to speak for yourself. They only deal with your medical care. (You will need a different document called a Last Will and Testament to deal with your material goods.)
A Living Will, without having appointed someone to speak for you, is of limited value. Frequently the decisions that need to be made are not specifically addressed in the Living Will, which is why a healthcare agent will need to know what you would want and be authorized to make decisions on your behalf.
What do Advance Directives and Living Wills cover?
As mentioned, both cover a statement of preferences about treatment. Additionally, other sections of an Advance Directive appoints someone to speak for you. Some states give you choices that you can mark.
An example of the information you fill out is:
I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (3) the likely risks and burdens of treatment would outweigh the expected benefits,
I want my life to be prolonged as long as possible within the limits of generally accepted health care standards.
RELIEF FROM PAIN: Except as I state in the following space, I direct that treatment for alleviation of pain or discomfort should be provided at all times even if it hastens my death
Almost all Advance Directives provide blank spaces so you can write your specific wishes regarding various treatments and what quality of life is important to you.
When a person is healthy, it is difficult to know what specific issues might arise following a sudden illness or accident, and therefore what to include in the living will portion of an Advance Directive. That is why it is so important to appoint a Healthcare Agent or equivalent who knows you, can anticipate your wishes, and can speak for you.
Many health care decisions are made when people are temporarily unable to make their own decisions because of a treatable illness or injury. As time goes on and chronic diseases or health conditions develop, it is easier to forecast the scenarios that might arise, but there are always surprises.
How much flexibility is there in interpreting Healthcare wishes?
The Living Will portion of an Advance Directive is NOT a medical order so doctors do not have to follow them exactly. In general, your wishes will be honored, so long as they are known, meaning the Advance Directive is available when it is needed. See here for suggestions on how to make that happen.
However, if your wishes are different from hospital policy, they will most likely not be followed. It pays to discuss your wishes with your doctor before you are admitted so you understand their policy. This is most likely to be an issue when admitted to a religiously affiliated hospital.
Advance Directives are not valid outside of the medical environment, meaning if 911 is called you will be resuscitated if necessary and taken to the nearest hospital. To prevent that, you must have a Do Not Resuscitate (DNR) order or a POLST containing DNR instructions available to the EMT’s.
How else can you ensure your wishes are followed?
Your Healthcare Agent is the person that can speak for you when you cannot; they are your legal representative and the doctors must listen to them. It is also useful to fill out a HIPAA Right of Access to Healthcare Information for anyone you want involved in your care.
Remember Advance Directives, including your appointment of a Healthcare Agent, are not valid outside of the medical environment. If you have clear wishes about not being resuscitated if 911 is called, you need a DNR or POLST.
Complete an Advance Directive
We hope that you have a better understanding that a Living Will is part of Advance Directive and not a standalone document. Having an Advance Directive for your state completed, signed, and notarized is an important part of your care journey.
We have Advance Directives for all 50 states, Washington DC, and Puerto Rico available for you to download and fill out. We encourage you to do it today!
