The COVID-19 pandemic has motivated an ever-growing number of people to contemplate what treatments they would and would not like to receive at the end of life. Many individuals, driven by media stories about hospital situations, life-or-death decisions about ventilators, and dying alone in a pandemic, are reconsidering their advance directives or writing them for the first time.
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.
Fully 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.
Determining how to broach these topics with people important to us can be a challenge, but having these conversations can be liberating. Making and 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. Especially in the Covid-19 era, an advance directive can provide peace of mind and control when everything in the world seems uncertain.
In this article, we answer some of the most frequently asked questions about advance directives and provide you with the information you need to create your own for your Life File.
What is the 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 can I 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 must I include in my advance directive?
- The name and contact information of your healthcare agent/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. A sample question: Do you want to receive artificially provided nutrition or hydration when you are close to death and/or permanently unconscious?
- Names and signatures of individuals who witness your signing your advance directive, if required. Not all states require witness signatures.
- The signature and seal of a notary public, if required by your state. Not all states require advance directives to be notarized.
What else would be good to include in my 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? For that matter, what defines a life worth living? Do you define life by the intake of breath and nutrients? Is it defined by consciousness? At what point do you want to prolong it 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 should I go about identifying my healthcare agent/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 I’ve identified this person, how do I talk to them about what care I want – and don’t want – at the end of life?
Have multiple conversations with your healthcare agent about your wishes. Take them out to tea, have them over for dinner, go to a bar or library. Talk about what you want, 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.
What if my healthcare agent/proxy is unavailable to execute their duties when I am dying?
It is important to appoint an alternative agent/proxy for exactly this reason. Identify and inform that person as you did your “main” agent/proxy, and list them as an alternate on your advance directive form.
What about the two witnesses? Are there any special requirements for who can and can’t serve in this role?
In most states, witnesses cannot be:
- Your healthcare agent or proxy;
- Any of your care providers;
- Related to you by blood, adoption, or marriage;
- Entitled to any portion of your estate upon your death.
I live in one state 9 months of the year and spend the other 3 months elsewhere. Will my advance directive be honored in both states?
You will need to complete an advance directive form for all states in which you live and/or receive care.
I want to complete an advance directive, but due to COVID-19 I cannot meet with a notary and/or witnesses in person. Can I meet with my witnesses on Zoom, get their digital signatures, and/or get the form notarized online?
Possibly. 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.
My advance directive document is complete. Who else should have a copy of it?
Make sure the following people have copies of your advance directive:
- Your primary and alternate healthcare agents/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. Note that sharing the document is not a replacement for having conversations about its contents.
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 should I 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. Cost for registration and a 5-year membership is $59.99.
Should I have a copy with me when I travel?
Absolutely. It’s also a good idea to 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.
Can I turn my 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 should I revisit my 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/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