Expressing Organ Donation Wishes in Your Health Care Directive

A health care directive (often called an advance directive or living will) is a legal document that allows you to specify your medical treatment preferences and appoint someone to make health care decisions on your behalf if you become unable to communicate. In most states, you can use your health care directive to state whether you want to donate your organs, tissues, or body after death.

If you already know your wishes for organ donation or have made arrangements to donate, you can skip to the steps for including them in your health care directive and documenting your instructions in other ways. If you are unsure, the first part of this article explains why organ donation is important and how it can fit into your plans.

The Need for Organ Donation

More people are donating organs, but there are not enough for everyone who needs them. In the United States, over 100,000 people are waiting for organ transplants. The shortage is serious—about 13 people die each day while waiting for a transplant.

Why are organ donations important? One donor can save up to eight lives and help many more through tissue donation. Donated organs include the heart, lungs, liver, kidneys, pancreas, and intestines. Tissues like corneas, skin, bone, and heart valves can also be donated. For current statistics, visit www.organdonor.gov.

Religious or Family Concerns About Organ Donation

Most major religions see organ donation as a compassionate and generous act. However, organs must be removed soon after death, while some religions prefer the body to remain undisturbed for a few days. This can be difficult for people who follow both beliefs. If you are unsure, talk to your religious or spiritual adviser.

Sometimes a person's wishes about organ donation may differ from what their family wants. This is why it is important to write down your wishes clearly and talk with your loved ones about your choices. If you document your wishes and register as an organ donor as described below, family members usually cannot legally override your decision. A recent Arkansas law allows next of kin to override a deceased person’s wishes, but this law has been challenged in court.

In reality, organ donation decisions must be made quickly after death, and organ procurement organizations often ask the next of kin for permission. This can mean the deceased person’s wishes are overlooked. The best way to help is to document your wishes and make sure your family knows what you want and why.

Who Pays for Organ Donation After Death?

Many people also worry about the costs of organ donation. Donating organs does not cost your family anything. The recipient or their insurance pays for all costs related to organ recovery, preservation, and transplant. Your family is still responsible for any medical bills before death and for funeral and burial costs. The organ procurement organization covers all expenses related to the donation process, so donor families do not incur additional financial burdens during a difficult time.

The Organ Donation Process

Before any organs are removed, doctors who are not involved in the donation process must confirm that the person has died. Death is usually declared using either brain death or after the heart stops beating. Once death is confirmed, the local organ procurement organization is notified and takes over. The body stays on a respirator to keep blood flowing to the organs until they are removed, usually within 24 hours.

Organ donation does not change how the body looks or prevent a funeral or open-casket viewing. The surgery to recover organs is done with care and respect, just like any other surgery. Incisions are closed and covered, and the body is treated with dignity. Funeral arrangements, including embalming and viewing, can happen as usual after donation. Many families find comfort knowing their loved one’s final act helped save lives.

How to Express Your Wishes for Organ Donation

Your health care directive is a good place to write down your wishes about organ donation. Here are a few ways you can do this:

• Mention any existing arrangements. If you have already arranged to donate organs or signed a donor card, your health care directive can note this and explain where to find the documents.
• Give specific instructions. If you have not made arrangements but want to be a donor, write your wishes in your health care directive. You can choose to donate any organs or body parts, or only certain ones. You can also state how your donation can be used, such as for transplant, therapy, research, education, or any legal purpose. If you do not want to donate your organs, clearly state this in your health care directive.
• Let your health care agent decide. If you have a health care agent, you can allow them to make the decision about organ donation for you. Be sure to talk with them about your feelings and give them guidance.

Make sure to properly finalize your health care directive by signing it and having it witnessed or notarized in accordance with your state's laws.

Other Ways to Make Your Organ Donation Wishes Clear

To make sure your donation wishes are followed, complete your health care directive and register with your state’s organ registry at www.organdonor.gov/sign-up. Many states let you choose which organs or tissues to donate and how they can be used. Medical staff can access these private registries, which are run by states or nonprofits, at any time. In most states, you can also register at the DMV, and your donor status will appear on your driver’s license.

You can also sign up with the national registry at www.donatelife.net. This registry is separate from state registries, and you can join both. Medical staff check both lists when someone dies. If there is a conflict, the most recent registration is used.

Make sure your organ donation wishes are known by talking about them with your health care agent, family, and friends. As noted above, written instructions and a donor card may not be enough if a family member objects, so be sure to clearly communicate your wishes.

More Information About Health Care Directives

Choosing to become an organ donor is a personal decision that can help others in a lasting way. By writing down your wishes in your health care directive, registering with your state’s organ donor registry, and talking with your loved ones, you can make sure your gift of life is honored.

For more information about health care directives and estate planning, see the following articles:

• What Is Estate Planning?
• Advance Health Care Planning: Specifying Your Wishes
• Advance Care Planning for Different Medical Conditions
• What Is a Final Wishes Document?

You can learn more about making health care directives valid in your state in WillMaker’s Legal Manual.