Everything You Need to Know About Living Wills

what is a living will?

If you’ve heard of a living will before, you may think that it is similar to a regular last will and testament. But the name is misleading—a living will has virtually nothing in common with a last will and testament. A last will and testament sets forth how your estate (assets and property) should be distributed after you die, and can also include guardianship provisions for any children under 18. A will does not go into effect until after you die.

A living will, on the other hand, is a set of directions or preferences for your medical care should you become incapacitated and unable to express your wishes at some point. A living will is only valid while you are alive.

Why you should have a living will

So why do you need a living will? If you have any preferences at all regarding medical care and end-of-life decisions To make sure your end-of-life care wishes are respected

Avoid family disputes (may end up needing court-appointed guardian if there are disputes between family members or between family and your healthcare provider

Doesn’t that sound like it’s just a medical power of attorney?

A living will is not the same as a medical power of attorney. A medical power of attorney gives another person the authority to make decisions on your behalf regarding various aspects of your medical care.

The living will is written instructions for your medical provider. They accomplish similar things though, though—both can be part of an advance directive (also called an advance medical directive or advance healthcare directive, depending on the state).

An advance directive includes whatever instructions you have given or authority granted with regard to future medical care if you reach a point where you cannot express your wishes. In some states, verbal instructions to the health care provider or your family can serve as part of your advance directive, but it’s best to have those directions in writing.

What can a living will cover?

While some of the specifics vary from state to state, a living will can include:

  • Instructions on tissue or organ donations after you die.
  • Whether to keep you alive on a ventilator or dialysis machine
  • Do Not Resuscitate order (DNR)—orders to not use CPR or shock equipment if you go into cardiac arrest in a hospital or care facility
  • Do Not Attempt Resuscitation (DNAR; also called special DNR)—if you do not want CPR performed if you go into cardiac arrest outside of the hospital. This is more difficult to enforce if EMS is called, since their purpose is to resuscitate.
  • Do Not Intubate (DNI) orders—if you do not wish to be put on a feeding tube should you become permanently unconscious and cannot eat
  • Instructions regarding life-prolonging treatments if you have a terminal illness with no hope for a cure
  • Instructions regarding treatment if patient has Alzheimer’s or other dementia
  • Whether or not you want fluids by IV if you cannot drink
  • If you want palliative care (also called “comfort care”)—care which doesn’t cure you but helps you feel better, such as treatment for nausea, pain, etc.
  • If you want to get antibiotics and/or antivirals to treat infections
  • When you would or wouldn’t want life support treatments
  • Specific directions that you do NOT want a DNR order (these have occasionally been put in place by a medical provider without authorization)

How is a living will different from POLST?

The difference between POLST and a living will is that the living will is not a medical order, and is not filled out or necessarily signed by your doctor. A POLST is a medical order specifically for your healthcare provider.

In most states, there is also an option to include a document called POLST, which stands for Physician Orders for Life-Sustaining Treatment, as part of your advance health care planning.

Although called by a variety of names, such as MOLST (medical orders for life-sustaining treatment), MOST), Physician's Orders on Scope of Treatment (POST), Transportable Physician Orders for Patient Preferences (TPOPP), or Medical Orders on Scope of Treatment (MOST), it accomplishes the same thing. It’s a form with medical orders on it stating your end-of-life preferences, and is displayed prominently in your hospital room or care facility.

It is never mandatory, although some states require health care providers to offer it if you have a terminal illness and are not expected to live beyond 5 more years. It is usually filled out by your doctor or a patient coordinator. Some states also require the patient’s signature; other states do not.

It can include instructions in the form of a medical order for many of the same things that may be included in a living will, such as use of a ventilator, whether to resuscitate or not, use of antibiotics, pain management, intubation (feeding tube), etc.

Do I also need a medical power of attorney?

Granting someone durable power of attorney for medical purposes (also called healthcare proxy in some states) can be a good idea simply because it is difficult to anticipate every situation in which a medical decision will be required. It is another piece of that should be included as part of your advance healthcare directive. If you have given someone medical power of attorney, then they can make decisions in accordance with your wishes rather than having those decisions default to your healthcare provider or next of kin automatically.

Your healthcare proxy can make medical decisions based on your general wishes for things not addressed in your living will, and can go to court for you if necessary. They can choose to switch medical providers if it is in your best interest, and make sure that your health care providers understand your wishes. Doctors and nurses have been known to misinterpret orders from a living will, or assume that just having a living will means that you do not want to be resuscitated.

You can limit the authority of your healthcare proxy if you wish, though it may not be wise in every case. You can clearly state that power of attorney does not have the authority to directly and intentionally end your life, or to direct that you die through starvation or dehydration by withholding food and/or liquids. This protects you and also protects them from having pressure put on them to remove feeding tube, ventilator, etc.

Who makes decisions for me if I don’t have a living will or medical power of attorney?

If you don’t have any advance medical directive in place (living will and/or medical power of attorney/healthcare proxy), then you are left to the mercy of the default priority of decision makers in your state.

Many states have a priority list of decision makers. In some states, the doctor can select to follow the opinion of someone lower in the priority list because they are better qualified (or because they agree with them), which may result in decisions you would not have supported, such as not trying hard enough to prolong your life, or keeping you alive longer than you wish using medical equipment, feeding tubes, and IVs for fluids.

Do I need a lawyer to draft my living will?

Most states have forms available to help you draft a living will that conforms with the state’s requirements. You can usually find those forms at senior centers, public libraries, or online. You can also choose to use estate planning software or living will software to generate a living will that satisfies your state’s requirements.

If it makes you feel more comfortable, you can definitely have a lawyer draft or review your living will. The important thing is that your will is valid for the state you live in. Some states, for example, require your living will to be signed by two witnesses, or notarized, in order to be valid.

Is my living will still valid if I move to another state?

Even if you follow your state’s requirements for a living will, it is not necessarily valid in another state, since it is not a legally binding document. Many states recognize a living will signed in another state, especially if the requirements are the same or similar (such as two witnesses or notarization).

But instead of taking the risk of having a living will that is not valid in your new state, consult a lawyer or check state forms to draft a new one. You may also consider having a living will for every state you spend a significant amount of time in.

When does living will take effect?

It goes into effect when you become incapacitated. Usually that means that you must be permanently unconscious or in a vegetative state. The definition of incapacitated varies from state to state, and states have different rules about how to certify that you are incapacitated. But it usually requires certification by your doctor and a second doctor stating you have a terminal illness and are unable to communicate or are permanently unconscious.

Is a living will legally binding?

It is not. It is legally recognized but not legally binding. But there are penalties that may impact healthcare providers if they violate a patient’s valid living will or advance medical directive.. so there are incentives for them to follow your directions. Providers may be sued for malpractice, face discipline or sanctions from the state licensing board, or a hospital could be penalized for violating Medicare’s conditions of participation.

On the flip side, they are generally immune from civil and/or criminal liability if they follow the instructions in your living will, which is another incentive to abide by it rather than override it.

Should I wait until I’m older to get a living will?

If you have specific preferences, don’t wait. Unanticipated medical problems can happen any time. It is especially important if you have known health problems or a terminal illness, but people get into accidents and can become permanently unconscious at any age. If you have preferences for your medical treatment in the event you become incapacitated, then take the time to write it down. You do not have to be a certain age to have a living will.

Where to keep it

A living will is not like a last will and testament—don’t keep it locked in a safe or in a safety deposit box. Keep a copy with you, give one to your healthcare proxy, file it with your primary care physician and other doctors as part of your medical record, and give a copy to your hospital or care facility if you have one. Give to family members, health care providers, hospital or care facility if you have one.

Keeping it current

Your wishes will likely change over time. What you think you want in terms of medical care when you are in your 30s and imagining you become permanently unconscious will likely be different that what you want when you are in your 80s. So keep it updated! You can change it whenever you like.

A common recommendation is that you update your living will according to the 5 Ds: every decade, if you divorce, if you have a new diagnosis, experience the death of a loved one, or deteriorate. It does little good to have a living will in place when it no longer reflects your wishes.