En español | "Her living will takes over now,” said the nurse practitioner the morning after my mother slipped into a coma. I was 51 weeks into 24-hours-a-day caregiving, which included constant decision-making about hospital, rehab and nursing facility admissions as well as readjustments of medication and treatment plans — without a break. Practically every day of caregiving held life-or-death choices. And, suddenly, there were no more decisions to make. All I had to do was be a daughter. To hold my mother's hand, sing and talk to her, and wait. And when she passed away, my heart, mind and soul were at peace.
My mom's living will said that she did not want life support or to be kept alive when there was no chance that she could survive without life support. And so, after examination and deliberation by her physicians, her final wishes were honored and carried out. It's what she wanted. But her living will was also a gift to me, because without it I wouldn't have been able to let go and wouldn't have known that beautiful peace.
Why it matters
There are many reasons to make a living will: to give guidance to your doctors and health care surrogates, provide clarity and closure to your loved ones, prevent conflict or disagreements among family members, and limit the emotional burden on your closest people at the time of your death. Most important is that you remain the captain of your own ship, with the authority to dictate how you want to live and die. Considering that the majority of dying people are unconscious, in distress, or otherwise not able to speak, the living will serves as your voice when you may not have one.
Despite all these reasons, not many Americans have a living will. Well under 40 percent of U.S. adults have created a living will (or similar document). That means that 60 percent are rolling the dice on who will be making decisions for us at the end of our lives. Twenty-five percent report never having thought of end-of-life planning at all. Some simply do not know what the living will is or how it works.
A living will is a written, legally binding document that informs your doctors about your preferences for medical care at the end of life. Because these are legal documents, you may use a lawyer to help you understand and write a living will. However, you do not need to. With a little research and reflection, you may create your own living will with ease and for no cost.
Every state has different laws and practices, so please be sure to use a living will that your state recognizes. Some use standard forms, some allow you to draft your own. And be sure to follow your state's rules about what kind of witnesses you should use and whether the document needs to be notarized.
What to include in your living will
In general, your living will may have:
- A standard direction that you do not want life-prolonging procedures administered or continued if there is no probability of your survival.
- More specific directions about what care you do or do not want (for example, dialysis, mechanical ventilation to assist with breathing, artificial hydration and nutrition or CPR).
- Anatomical gift decisions (meaning, whether you wish to be an organ and tissue donor or donate your body to science or education).
- Palliative care wishes (like whether you wish to die at home or avoid invasive tests or procedures).
- Spiritual and religious considerations (your faith may have its own directions for how to create a living will).
Some people are concerned that doctors will not provide medical care if they have a living will. But remember: This is intended only to be an end-of-life document. It does not prevent routine medical treatment or care for conditions that are not life-threatening.
Your living will is not a script, however. One document can't anticipate every possible scenario and dictate exactly how things will go. Instead, consider it more of a conversation (and that conversation may change over time, because your feelings about death may be different when you're in good health than after a diagnosis of a terminal condition or debilitating disease).
Do not wait until confronted with an illness to create a living will. Take into account that an unexpected illness or event can happen at any time. So, write your living will when you're in good health, but review and update it as needs and conditions change.
As you do this, talk to your doctors about your wishes. Have them put your living will on file or consider placing it in a registry. Also speak with your closest family and friends, particularly the ones who may be your caregivers one day, so they know what your wishes are. Having these talks and writing your living will ensures that you live according to your own terms until your last breath, while giving your loved ones a sense of peace when it matters most.
Amanda Singleton is a recipient of CareGiving.com's national Caregiving Visionary Award and serves caregivers across their life span through her law practice. Follow her on Twitter @singletonlegal and on Facebook.