Understanding Advance Directives: A Complete Guide

Opening

30 hours after I'd boarded the plane in Europe, I was sitting with my mother and brother in a hospital hallway listening to the options my father had left, and trying to decide what he would have wanted. My father, James, was being kept alive by machines, and the path forward was a series of branching, terrifying decisions. What if his heart stops, do we try to restart it? What would his life be like if he recovered after this massive brain bleed? What could he possibly get back? Each question was a reminder of how little we knew about what our father would want in this final, quiet chapter.

We were his advocates, his voice, but because we hadn't discussed enough of the specifics, we were trying to piece out what he would want based on imperfect information - desperate for a clear answer not just for him, but for our whole family to have peace with what came next.

That experience is why I’m writing this. It’s why I’m so passionate about the work we do at End of Life Playbook. Because no one should have to guess what their loved one would want. No one should have to carry the weight of those decisions alone. An advance directive is more than just a legal document; it’s a gift. It’s a conversation, a roadmap, a final, loving act of guidance for the people you leave behind. It’s the voice your family needs to hear when yours has gone silent.

Problem Statement

The problem is that we don’t talk about dying. We treat it as a failure, a subject to be avoided at all costs. But death is not a failure; it’s a fundamental part of life. And by refusing to acknowledge it, we are creating a crisis for our families. A 2018 study from the Stanford University School of Medicine found that while 80% of patients say they want to talk to their doctors about end-of-life care, only 7% have actually had that conversation. [1] This silence has a profound and lasting impact on the people we love.

When you don’t have an advance directive, you are forcing your family to make life-or-death decisions in a vacuum. They are left to grapple with their own grief while simultaneously trying to channel your wishes, wishes you may have never expressed. This can lead to conflict within families, as different members may have different ideas about what you would have wanted. It can also lead to guilt and trauma for the person who is ultimately forced to make the final call. They will carry the weight of that decision for the rest of their lives, always wondering if they did the right thing.

And it’s not just about the emotional toll. The financial implications can be staggering. Without clear instructions, you may receive medical treatments that you would not have wanted, treatments that can be incredibly expensive and may not improve your quality of life. This can deplete your family’s resources and create a legacy of financial stress. An advance directive is a simple, powerful tool that can prevent all of this. It’s a way to protect your family from the emotional, financial, and spiritual turmoil that comes with a medical crisis. It’s a way to ensure that your final days are a reflection of your values, not a reflection of a broken system.

Main Content

Section 1: What is an Advance Directive?

An advance directive is a legal document that allows you to express your wishes regarding medical treatment in the event that you are unable to communicate them yourself. It's a way to ensure that your voice is heard, even when you can't speak. Think of it as a pre-recorded message to your doctors and your family, a set of instructions that will guide them in making decisions about your care. These documents only go into effect when you are incapacitated and can no longer make decisions for yourself.

There are two main components to an advance directive, and while the terminology can vary from state to state, the concepts are universal:

• A Living Will: This is a written statement that details the types of medical treatment you would or would not want to receive in certain situations. It's your opportunity to define what “quality of life” means to you.
• A Healthcare Proxy (also known as a Medical Power of Attorney or Healthcare Surrogate): This is a legal document in which you appoint a specific person to make healthcare decisions on your behalf if you are unable to do so. This person becomes your advocate, your voice.

It's important to understand that you don't have to be old or sick to create an advance directive. In fact, it's something that every adult should have. A sudden accident or illness can happen to anyone at any time. By creating an advance directive, you are planning for the unexpected, and giving your loved ones the clarity and confidence they will need to navigate a difficult situation.

Section 2: The Two Key Parts of an Advance Directive: The Living Will and The Healthcare Proxy

Let's take a closer look at the two core components of an advance directive:

The Living Will:

A living will is your chance to be specific about your medical wishes. It's not about a specific diagnosis; it's about the types of treatments you would or would not want to receive. For example, you can specify your wishes regarding:

• Resuscitation: If your heart stops or you stop breathing, do you want to be resuscitated? This can include CPR and other measures.
• Mechanical Ventilation: If you can no longer breathe on your own, do you want to be placed on a ventilator?
• Tube Feeding: If you can no longer eat or drink, do you want to be fed through a tube?
• Dialysis: If your kidneys fail, do you want to receive dialysis?
• Palliative Care: You can also specify that you want to receive palliative care, which is focused on providing comfort and managing pain.

My father's one clear wish, to not be in a nursing home, was a form of a living will, albeit an informal one. It was a statement about his quality of life, and it was a powerful guide for us. A formal living will takes that a step further, providing a detailed roadmap for your medical care.

The Healthcare Proxy:

A healthcare proxy is the person you choose to be your voice. This is a person you trust implicitly, someone who knows you well and will honor your wishes. Your proxy will be responsible for making decisions about your medical care, including the ones you've outlined in your living will. They will be the one to talk to the doctors, to ask the hard questions, and to ensure that your values are at the center of every decision.

Choosing a healthcare proxy is a big decision. It should be someone who:

• Is willing to take on the responsibility.
• Can handle stress and make difficult decisions.
• Is not afraid to ask questions and advocate for you.
• Understands your values and wishes.

It's also a good idea to name an alternate proxy, in case your primary proxy is unable to serve.

Section 3: How to Create Your Advance Directive

Creating an advance directive is a straightforward process. Here are the steps you need to take:

1. Reflect on Your Wishes: Before you put anything in writing, take some time to think about what's important to you. What does a good quality of life look like? What are your fears and hopes for the end of your life? Talk to your family and friends. Read books and articles. The more you explore your own feelings, the clearer your wishes will become.
2. Choose Your Healthcare Proxy: This is one of the most important decisions you'll make. Talk to the person you have in mind. Make sure they are willing and able to take on this role. Have an open and honest conversation with them about your wishes.
3. Get the Forms: Each state has its own laws and forms for advance directives. You can find your state's forms on the website of the National Hospice and Palliative Care Organization or the AARP. [2] [3] You can also get them from your local hospital or your attorney.
4. Fill Out the Forms: The forms will guide you through the process of documenting your wishes. Be as specific as you can. The more detail you provide, the easier it will be for your proxy and your doctors to understand your preferences.
5. Sign and Witness the Forms: In most states, you will need to sign your advance directive in the presence of two witnesses. The witnesses cannot be your proxy, your doctor, or anyone who will inherit from you. Some states may also require you to have the document notarized.

Section 4: State-Specific Considerations

It is crucial to understand that the laws governing advance directives vary from state to state. What is legally binding in one state may not be in another. For example:

• Witness Requirements: The number and qualifications of witnesses can differ.
• Notarization: Some states require your advance directive to be notarized, while others do not.
• Form Specifics: Each state has its own approved forms. It's essential to use the correct form for your state to ensure its validity.

To find the specific requirements for your state, you can use the AARP's state-by-state guide to advance directives. [3] This is a critical step to ensure that your document is legally sound and will be honored when it's needed most.

Section 5: Storing and Sharing Your Advance Directive

Once you've created your advance directive, it's essential to store it in a safe and accessible place. Here's what you need to do:

• Give a copy to your healthcare proxy. They need to have it readily available if they are called upon to make decisions for you.
• Give a copy to your doctor. Your doctor should have your advance directive on file in your medical record.
• Keep a copy for yourself. Store it in a place where it can be easily found, such as your End of Life Playbook.
• Tell your family where it is. Make sure your loved ones know that you have an advance directive and where to find it.

You can also consider using a service like the U.S. Living Will Registry, which stores your advance directive and makes it available to hospitals and healthcare providers 24/7. [4]

Actionable Takeaways

1. Download your state's advance directive form this week. You can find it on the AARP website. [3]
2. Schedule a conversation with the person you are considering for your healthcare proxy. Talk to them about your wishes and make sure they are comfortable with the role.
3. Start a folder on your computer or in your home for your end-of-life documents and put the blank advance directive form in it.

CTA

Don’t wait for a crisis to make your wishes known. Take control of your healthcare story today. Your End of Life Playbook can help you create, store, and share your advance directive, ensuring that your voice will always be heard. Start your playbook on endoflifeplaybook.com

References

[1] Stanford University School of Medicine. (2018). Most Patients Want to Discuss End-of-Life Care, But Few Do. https://med.stanford.edu/news/all-news/2018/04/most-patients-want-to-discuss-end-of-life-care-but-few-do.html [2] National Hospice and Palliative Care Organization. https://www.nhpco.org/ [3] AARP. (n.d.). Advance Directives by State. https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/ [4] U.S. Living Will Registry. https://www.uslivingwillregistry.com/