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It can be very difficult to think about what might happen at the end of our lives. Death is never an easy discussion, but what might be even harder is the deep question of how you want to live out your final moments. That difficulty might be why only 45% of Americans have a living will, according to a 2020 Gallup poll. However, as we get older we tend to think more about what happens when we die, which is probably why 72% of those aged 65 and older have a living will and 52% of those aged 50 to 64 have one. The overall number skews downward when you consider that only 15% of younger people, those aged 18 to 29, have a living will[1].
Why do so many people not have a living will? According to a survey by VITAS Healthcare, 42% don’t believe they need one because they are not sick or dying. Another 26% believe it’s too depressing to think about. And 23% don’t know how to create a living will.
Let’s look at the vital points you need to know about a living will, what it actually does (and doesn’t) do, and how to get one.
What is a Living Will?
A living will is a document that spells out your final wishes in a way that helps family, friends, and medical personnel understand what you want, even when you can’t speak for yourself. Consider it insurance against the worst possible scenarios. Just as so many people choose a medical alert system with fall detection for the peace of mind and protection it brings, a living will can help you rest easy, knowing that no matter what happens, your wishes will be clear and carried out.
It’s important to understand what a living will actually is. It’s considered an advance directive. An advance directive is defined by the National Cancer Institute as “a legal document that states a person’s wishes about receiving medical care if that person is no longer able to make medical decisions because of a serious illness or injury.”
There are several types of advance directives. In addition to the living will, the durable power of attorney for healthcare and the do not resuscitate order are usually among the options. The types of advance directives available to you depend upon the state in which you reside. Some of these directives might allow another person, such as your spouse, family member, or friend, to make medical decisions on your behalf if you are no longer able to make those decisions on your own.
The living will informs friends, family, and medical personnel on what your wishes are if you become incapacitated or somehow unable to make decisions for yourself. It spells out what you want to happen concerning lifesaving measures, artificial ventilation, tube feeding, and more.
How Do I Create One?
A living will must be created according to certain guidelines. Though these might vary from one state to another, one thing remains clear: Your wishes must be outlined in the living will document according to state law. It’s a binding legal document, which means that simply telling someone what you want or even writing it down on your own is not enough to ensure your wishes will be carried out. Therefore, you should always consult an attorney about how to prepare your living will.
When you are preparing your living will, you will answer many difficult questions that will help determine the care you receive at the end of your life. According to the Mayo Clinic, these can include decisions on:
· CPR: Do you want to be resuscitated if your heart stops beating?
· Tube feeding: Do you want your body to receive nutrients and fluids if you are unconscious?
· Mechanical ventilation: Do you want to be on a ventilator that will take over breathing for you if you can’t breathe on your own?
· Medications for infections and the like: If you are nearing the end of your life, do you want to receive antibiotics or antivirals to treat certain conditions, or should the illness be allowed to run its course with no intervention?
· Dialysis: Do you want dialysis to remove waste from your blood?
· Palliative care: How do you want to be kept comfortable and have your pain managed in your final days?
A living will can also stay in place for a brief period after you die. Your living will can cover organ donations – in that event, you will be given life-sustaining treatment only temporarily to complete the organ donation procedure. You can also choose whether you want to donate your body for scientific research; in that event, your living will provide instruction for what happens to your body after you die.
Living Will Versus Power of Attorney—What’s the Difference?
A living will and a durable power of attorney for healthcare are two different things. When you choose a durable power of attorney for healthcare, you are choosing someone to make choices on your behalf.
To choose a power of attorney for healthcare (also known as a healthcare agent or proxy), make sure they meet all the state’s requirements. In general, they must be an adult who is competent to make decisions, cannot be your doctor or anyone on your healthcare team, and can’t be someone who owns, manages, or works for the facility where you are being treated.
A healthcare power of attorney can make many decisions, such as the facility where you will be treated, which professionals will treat you, and consent or denial of certain medical care. However, your living will always trumps the power of attorney. For instance, if you chose in your living will to not be put on a ventilator, your healthcare agent can’t change that[2].
Ultimately, the job of a healthcare proxy is to make sure the wishes in your living will are carried out.
I Have a Living Will. Now What?
Once you’ve completed your living will, it’s time to make sure others are aware of your wishes. Keep the original document in a safe place. Make sure someone close to you knows where it is and can get it quickly if necessary. Give a copy to your physician to put into your file. If you have chosen a healthcare agent, they will need a copy as well. If you have a family or professional caregiver, they should be aware of the document. When you travel, keep a copy in a safe place. You can also create a small card to carry with you that indicates you have a living will and where a copy can be located.
It’s very important to talk with family members about your living will and what you want to happen at the end of your life. This conversation might not be an easy one to have, but it’s very necessary. Making your wishes clear helps ensure your life ends the way you want it to end, but it also relieves your loved ones of the burden of making choices for you.
How Often Should I Update It?
You should revisit your living will on a regular basis. Consider doing this on a particular day each year, such as around New Year’s Day or your birthday, so you don’t forget to do it. You should also revisit it if you become widowed or divorced, or if you are presented with a new diagnosis that affects your long-term health outlook.
Look over the living will and make sure that what you have requested still fits in with your beliefs and wishes for your final moments.
If you still agree with the choices you made, nothing has to be done. Your living will is always in effect until you very clearly make changes to it. To make those changes, you can revoke the living will and create a new one. Remember that this is a binding legal document, so destroying your copy of the living will is not enough to change your preferences. You will need to speak with an attorney to change the living will and get copies of the new directive.
Some Common Myths About Living Wills
There are a lot of misconceptions swirling around out there about living wills. Here are the facts you need to know to make informed decisions about your living will and end-of-life care.
Myth: No matter what a living will says, the doctor can do whatever he or she wants.
Fact: A living will goes into effect when a doctor determines that you are terminally ill or permanently unconscious. These are clear medical states with evidence to back them up. They are not opinions! You can’t simply be declared unconscious, unfit, or unable to make decisions – your status of being permanently unconscious must be made by a physician and a second doctor must agree.
If a doctor is unwilling or unable to comply with your advance directive, that doctor is duty-bound to turn your care over to another physician who will carry out your wishes.
Myth: Only the elderly need a living will.
Fact: Just like medical alert technology isn’t just for seniors, a living will also isn’t only for the elderly. A young adult can be incapacitated in the blink of an eye, through sports mishaps, traffic accidents, undiagnosed medical conditions, unexpected illness, and more. If they can’t make decisions about their health care, they are at the mercy of the medical system. It’s very important for everyone to have a living will.
Myth: A living will doesn’t prevent intubation or resuscitation.
Fact: A living will allows you to choose exactly what you want to happen at the end of your life. You can make your choices clear in your living will concerning resuscitation or ventilation – however, keep in mind that you can also create separate orders for these situations. A do not resuscitate order (DNR) and a do not intubate order (DNI) can be completed on their own.
The only caveat to this is an emergency situation where your wishes are not known to the paramedics or emergency department personnel. In this situation, it is their job to work to keep you alive. The moment they see a DNR, DNI, or living will, their actions will change accordingly[3]. This is why it’s so important to keep a copy of your living will in a place that is easily accessible.
Myth: A living will or DNR removes all comfort care.
Fact: According to the Ohio State Bar Association, a living will affects care that postpones death. This includes things like CPR, being on a ventilator, or getting a feeding tube, among others. A DNR or living will does not, in any way, remove the option of comfort care. Comfort care, also known as palliative care, is meant to keep you comfortable. This means you would continue to receive pain medications and other care that keeps you as comfortable as possible during your final moments.
Myth: Choosing a healthcare power of attorney means that person can do anything, even with my finances, without my permission.
Fact: When you choose a healthcare agent, you are agreeing to give them the ability to make decisions for you if you become unable to make them yourself. These choices are limited to your healthcare. If you are able to make decisions on your own, your choices always take precedence over anything someone else might want. When it comes to finances, a healthcare agent has no say in the matter. To allow someone to handle your finances if you cannot, you need to appoint a financial power of attorney.
Learning More About Living Wills
The rules about living wills vary from one state to another. To be certain of what you need to do, look at the laws in your state. However, if you split your time between two states (such as the “snowbirds” of the north who venture to Florida for the winter), you’ll need to make sure that the living will in your residential state is also valid in your secondary state. You can do this by speaking to an attorney who can verify that you are complying with the rules in both states.
What if something happens to you while you are traveling and you aren’t in either of those states? If that happens, your living will is likely to take over anyway. That’s because states are not allowed to infringe on your right to direct your own health care, even if the documents you have don’t follow state law to the letter – the spirit of what you wanted is clear in the living will and should be carried out[4].
Staying strong, safe, and healthy can help you live a longer life. To that end, take the time to exercise and eat right, see your doctor on a regular basis, take your medications as directed, implement aging in place solutions for your home, and consider the merits of a medical alert pendant to provide peace of mind. Look at the living will as a way to rest easy, confident in your choices, and to remove the burden of those choices from the family members and friends who love you so much. Making your choices early, before you actually need to make them, provides precious peace of mind for you and those you love.