Many people assume their loved ones will know what to do “when the time comes,” but data show few Americans have had detailed conversations about their wishes for end-of-life care.
92 percent of individuals surveyed by The Conversation Project said talking with their loved ones about end-of-life care is important, but just 32 percent have actually done so. A July 2017 Health Affairs survey found the majority of Americans had not documented their end-of-life wishes in writing, either.
Documenting concrete preferences for end-of-life care doesn’t have to be daunting. Wouldn’t it be nice to have a document that could serve as a catalyst for these conversations and provide clear instructions for how you want to die?
Good news: such a document exists. It’s called an advance directive, and completing it is one of the best ways to ensure your care preferences are honored.
Purpose of an Advance Directive (Also Known as a Living Will or Healthcare Power of Attorney)
- To articulate and document your wishes concerning medical treatment should you lose decision-making ability.
- To designate an individual, known as your healthcare agent or proxy, to ensure your wishes are honored should you no longer be able to speak for yourself. This includes, among other things, making decisions about when to withhold or withdraw life-sustaining treatment.
Where to Find an Advance Directive Form
The National Hospice and Palliative Care Organization has a list of advance directive forms for every state. We also recommend checking your state government’s website for the most up-to-date forms. Find quick links to all state and territory government websites at USA.Gov.
What to Include in Your Advance Directive
- The name and contact information of your healthcare agent or proxy.
- Answers to specific questions about your preferences for care if you become unable to speak for yourself. The forms and questions asked vary a bit from state to state.
- Names and signatures of individuals who witness you signing your advance directive, if required by your state.
- The signature and seal of a notary public, if required by your state.
FindLaw has a list of all advance directive/living will requirements by state.
What Else You May Want to Include in Your Advance Directive
- Detailed information about what procedures or types of care you would like to receive and what you wish to avoid at all costs that are not covered by the questions on the form. Would you want to take advantage of all life-support technologies if it would only postpone death? Would you want to use them if you were permanently unconscious? Would you want them if you were going through an advanced progressive illness?
- More general statements about your values regarding end-of-life care. What does a good death mean and look like to you? What defines a life worth living? Do you define life by the intake of breath and nutrients? Is life defined by consciousness? At what point do you want to prolong life and at what point do you want to preserve resources for other people?
- Personal desires for body disposition – in essence, what you want to happen to your body when you die – and plans for any memorial service(s).
- A list of people who cannot make healthcare decisions for you. Leave no room for ambiguity, which could lead to tensions between loved ones about your care as you are dying.
How to Go About Identifying Your Healthcare Agent or Proxy
An ideal person for the job is someone who:
- Knows you well. A spouse/partner, a family member, a close friend…all are good candidates.
- Excels at making difficult decisions under pressure.
- Is diplomatic and empathetic – critical traits for balancing the needs, wants, and unpredictable emotions of a patient’s loved ones.
- Isn’t afraid to ask tough questions, which invariably arise when discussing a dying individual’s end-of-life care.
- Is easily reachable by email, phone, and/or text.
- Is or can easily be within physical proximity of where you’re likely to receive care.
Once you have identified your healthcare agent or proxy, talk to them about the care you do or do not want at the end of your life. Have multiple conversations about your wishes and make sure you are heard and understood.
If you see fit, and if your agent doesn’t already know this information, you can share a bit about the personalities of the people who will be most invested in your health outcomes, and how best to handle these folks in situations when emotions will be running high.
This can be a serious conversation or it can be full of laughs. You get to decide how the conversation plays out.
Appointing an Alternative Healthcare Agent or Proxy
It is important to appoint an alternative healthcare agent or proxy in case yours becomes unavailable to execute their duties when you are dying. Identify and inform that person as you did your “main” agent/proxy, and list them as an alternate on your advance directive form.
In Most States, Witnesses Cannot be:
- Your healthcare agent or proxy;
- Any of your care providers;
- Related to you by blood, adoption, or marriage; or
- Entitled to any portion of your estate upon your death.
If you Live in Multiple States Throughout the Year
If you reside in multiple locations, you will need to complete an advance directive form for all states in which you live and/or receive care.
Completing an Advance Directive Remotely
Due to situations like COVID-19, not everyone can meet with a notary or witness in person. There may be a possibility of utilizing digital signatures and notarizing forms online. While it’s standard practice to conduct these meetings in person, some states are suspending in-person requirements and allowing people to conduct such interactions online.
The National Notary Association has a state-by-state breakdown of notarization rules. We also recommend checking your state government’s website for the most up-to-date information. Find quick links to all state and territory government websites at USA.Gov.
Who Should Have a Copy of Your Completed Advance Directive
- Your primary and alternate healthcare agents or proxies.
- Your doctor(s). Ask if your provider(s) can scan and upload the form to your medical chart.
- Optional: any family members, friends, or other important people in your life, to ensure they know and understand your end-of-life care preferences before you are dying.
It’s a good idea to note on each copy where the original is stored in case your healthcare provider or any other entity requires it for any reason.
Where you Should Keep the Original Copy
In a safe and accessible place in your home.
Additionally, you can complete and upload your advance directive and any other advance-care planning documents to the U.S. Advance Care Plan Registry. Doctors can easily access digitized copies of patient documents from the Registry to make informed decisions about patient end-of-life care. There is a cost for registration.
It is a good idea to carry a copy of your advance directive when traveling. You may also create a wallet-sized card that indicates you have an advance directive, identifies your healthcare agent, and contains instructions for where to find your directive. The U.S. Advance Care Plan Registry produces a card for you when you register.
Considering Turning Your Advance Directive into a POLST or MOLST Document
Talk to your doctor.
Physician/Medical Orders for Life-Sustaining Treatment (POLST or MOLST) is an end-of-life planning tool, initiated when your doctor expects you to live a year or less.
It contains your instructions for medical treatments for specific health-related emergencies or conditions. The instructions are based on decisions made by you and your healthcare team. Unlike an advance directive, a POLST form must be filled out by a medical provider.
Whereas advance directives identify a surrogate decision-maker and provide guidelines and values underlying a patient’s wishes, POLSTs turn those wishes into medical actions ordered by a physician. The two are complementary.
When and/or How Often to Revisit Your Advance Directive
You can review or change your advance directive at any time. It’s advisable to do so if your marital status changes or if you receive a medical diagnosis that may impact your end-of-life care preferences.
Once you’ve revised your form, be sure to destroy all copies of your old directive and distribute new copies to your medical providers, your healthcare agent or proxy, and anyone else with whom you shared your original directive.
- Understanding Advance Care Planning by National POLST
- Proactive Care Planning for COVID-19 by Respecting Choices
- COVID-19 Addendum for Advance Directives by the Hemlock Society of San Diego
- Starter Kits by The Conversation Project, including guides for choosing a health care proxy and talking to your doctor about end-of-life care, plus a new guide for planning your care during COVID-19.
- Creating Your Life File: A Checklist for End-of-Life Planning