We've all seen the stories - stories of grateful families and organ recipients. Lives saved and forever altered.... Two families that had never met forming bonds for a new lifetime....
Or is it really that way? We've also heard stories about doctors not going to extremes to save someone who is an organ donor. So what is the truth, and is organ donation worth considering for your family member?
Let's explore the process, the truths, the fears, and the realities so you and your family member can make an informed choice.
Organ donation is the process by which a living or deceased person allows his or her healthy organs or tissues to be donated to someone who needs a healthy organ or tissue to continue to live.
Organ and tissue transplantation saves lives. Approximately 60 people receive organ transplants each day. They are the lucky ones. Another 15 people die every day because not enough organs are available, on average. There are thousands on the waiting list. Organ donation is the gift of life.
When a person dies in a hospital that accepts Medicare, the hospital is required by law to contact an organ procurement organization (OPO) serving the area. The OPO works with the hospital to determine the suitability of the person for organ, tissue, or eye donation.
If death seems imminent or the patient has been declared "brain dead", the OPO is called. Multiple tests must be done to determine brain death. This is done by the doctors at the hospital, not the OPO.
Determination of Death by Neurological Criteria
FAQs About Transplantation and Donation, Including Brain Death
How Brain Death Works
Uniform Determination of Death Act
If the person has chosen to be an organ donor, the patient has to remain on a ventilator to keep the organs pumped with oxygen, even if they have been determined to be "brain dead". The patient's heart must continue to beat for organ donation to be an option. A patient will be pronounced "brain dead", which will be listed on their death certificate as the time of death, even though their heart has not stopped beating because of the ventilator. The family is consulted and kept appraised of the medical team's recommendation throughout the process.
If the person is a registered donor and lives in a state that has First Person Consent Legislation, the family is contacted and is offered the opportunity to donate. If the family is in agreement, the Organ Procurement and Transplantation Network (OPTN) is contacted. The OPTN then uses their national database of people needing donations to find a match. They take into consideration many medical factors of both the donor and recipient. The organ is offered to the transplant team (part of the OPO) of the first person on the list. It is then determined if timing, location, and other factors will work to make the match. If not, the second most likely candidate will be contacted. During this process, the OPO is in contact with the family and helps them understand what will happen.
If the family is not in agreement, the organization will most likely try to help a family understand why their family member may have wanted to donate, how important donation is, and try to bring the family to agreement. The OPO has the legal authority under these circumstances to proceed, but may be hesitant to do so.
If the person is a registered donor and lives in a state that does not have the First Person Consent Legislation or if the person is not registered, the family is given the opportunity to donate the organs of their family member, if the OPO determines suitability when called by the hospital. Their decision does not have to follow the deceased person's wishes. If the family decides on organ donation, the OPTN is then contacted as above.
An OPO serves as the link between the donor and recipient and is responsible for the retrieval, preservation and transportation of organs for transplantation. When the OPO begins the process of arranging for donation, the associated costs are taken care of by the OPO and/or hospital.
The donor organ "recovery" is done most often in a hospital operating room by transplant teams that are part of the OPO. Often, the hospital donates the operating room. The hospital is not directly involved in the process. If multiple organs are donated, separate teams of physicians with appropriate specialty areas will be participating. The process is similar to surgery and the body will be preserved in suitable condition for a funeral. Organ procurement organization representatives who understand what the families are going through keep the family informed throughout the donation process so they can be comforted that something positive is occurring from their loss.
Please note that if your family member dies at home, organ donation becomes more difficult. Only people who die in hospitals are accepted as donors for organs (heart, kidney, liver, lung). This ensures the best transplant measures to keep the organs in the best condition.
If your family member dies at home, they may be able to donate tissues including corneas, bone and skin. This would depend on the cause of death and how the body is handled after the death.
If, as the caregiver, you expect that your family member
will die at home, you will need to determine
which OPO covers your area. Contact the OPO one to two weeks before
the expected time of death for pre-screening and recording of the consent
to donate. At the time of death, call the 800 number to notify them.
They will make arrangements with your chosen funeral home for appropriate
transportation to the hospital or funeral home. No additional cost for
transportation will be charged. They will let you know if anything else
needs to be done.
Some families will prefer to keep the body at the home for a short period of time. Please note that the time frame from the time of death until "recovery" of donated eyes is 12 hours and for tissue, 24 hours. If those time frames are exceeded, the donation cannot occur.
Many families have the intent to allow their older family member to die at home. As a caregiver, you may think that your family member should register for tissue donation only. However, if your family member registered for both organ and tissue donation, this would cover occurrences such as an unforeseen hospitalization where death occurs unexpectedly.
If you are the caregiver for a family member residing in a long-term care facility such as a nursing home or assisted living facility, you would prepare for organ donation as you would for someone who dies at home. Do not rely on the facility to call the OPO unless you have made those specific arrangements. Even then, it would be good to have someone check to make sure the call was made. Organ donations are not suitable for the same reason as someone dying at home.
In the U.S., most major religions either support or have no objection to organ donation. It is viewed as a life-giving gift.
Please remember that, by law, organs are not allowed to be sold.
Many people feel uncomfortable talking about anything remotely related to dying when family members are concerned. However, these discussions ultimately ease the burden on the family members that are left behind.
If you are the person wanting to become an organ donor, let your family know that upon your death, they will be asked to make the decision for you if you are not a registered donor. This could be traumatic at such an emotional time.
- Let them know your reasons for wanting to become a donor.
- Let them know that, in a way, you will continue to live on - just through someone else.
- Let them know that you want to save lives.
- Let them know that this is a final gift you can give.
- Let them know that your body will not be disfigured from the process and that a regular open casket funeral may be held, if desired.
- Let them know that there is no cost to them or to the estate.
- Let them know that your faith community and leader supports the gift of life.
- Let them know that it is important to you.
- Let them know that their acceptance of your choice is important to you and to the potential donors who will be given a second chance at life because of the honoring of that choice.
- Let them know you want to ease their burden of the responsibility of choosing for you.
- Let them know you do not want family members fighting over the issue after your death.
- Let them know that you won't feel a thing!
Another important thing to do is to find out ahead of the discussion if your state has First Person Consent Legislation. If it does and you register, be sure to let your family know that the decision has been made and will be honored. Even though your family will be consulted about donating your organs out of respect, it would be unfair to your family to have the organ procurement organization inform them that you were legally registered as a donor and have that be their first exposure to the idea.
If you are a caregiver the same things are important. You should not have to make such an important decision at such an emotional time. You want to honor your family member's choice on the matter. In order to do that, you need to know what that choice would be. When the decision is made, be sure to register the decision and discuss the matter with other family members. What you don't want is disagreement among the family at the time of death.
Want to understand the "behind the scenes" stories? Want to hear, firsthand, the stories of recipients and donor families? The Gift of a Lifetime website offers these stories both in print and in slide show with sound format. These are personalized stories of real people, like you. Also provided is detailed technical information about the donation process and what, specifically, happens. A team of journalists spent two weeks in Philadelphia and Los Angeles documenting the organ donor program in human terms to tell the story from behind the scenes. Listen and watch the stories of others to help you have the discussions and make the choices.
If you have registered your wishes on your driver’s license (in some states) or signed a legal document indicating that you want to be a donor, qualified medical personnel have the legal authority to proceed with organ donation, even against the wishes of the family. This is called the First Person Consent Legislation. This would be traumatic for family members if they did not know or did not agree with the decision to become an organ donor. Therefore, it is critically important to discuss this matter with your family and/or the person that will be handling your affairs. Organ procurement organizations try to be sensitive to the needs of the family and will try to help them understand how important the donation is and how the process works. They will usually try to reach agreement with the family before proceeding.
If your state does not have a donor registry and/or you have not registered as a donor, your family will be asked about donation and will make the decision. There is nothing to compel them to honor your choices unless you have discussed the matter with them and gotten their agreement. As a caregiver, not honoring this choice after an agreement has been made may cause emotional distress later on. Family, friends, and clergy may have been told of your family member's decision. You will have to live with your decision.
As a caregiver, your agreement is a life affirming gift that can be given before death. People who are near death want to know that something good came of their life and that they made a difference. This is yet another way for them to accomplish this basic human need. Your support is a gift to both your family member and to the organ recipient and his or her family.
Consider, too, that it may be a comfort to establish a relationship with the donor recipient. Although the names of donors and recipients are kept confidential, there are means to correspond and, if both parties agree, to meet. That may bring you some comfort. And seeing the second chance for life that you and your family member have given may bring you joy during your time of grief and mourning. Think about it.
Organs that may be donated are:
Tissue donation is another way that donors may save lives. Some tissue that can be donated:
Eyes may also be donated. Giving the gift of sight is something to which everyone can relate.
Locating an Eye Bank
Understanding Eye Donation from Donation to Recipient
No testing is required to register to become an organ donor. Medical suitability for donation is determined at the time of death when the organ transplant team becomes involved. At that time, organs are tested for infectious diseases, including HIV. Only healthy organs are actually transplanted. It is encouraged that everyone register to become an organ donor whether you think you have suitable organs or not. Trained medical teams are the best ones to make that determination. You may think your organs or tissue would not be suitable, but actually they may be suitable and could save a life.
There is no charge to the family of the organ donor. The agency that collects the donation will cover the cost. The use of the hospital is usually donated but would never be charged to the family or the deceased person's estate in any case.
Patients needing an organ transplant are registered with the Organ Procurement and Transplantation Network (OPTN). This network was established by Congress in 1984. The OPTN is a public-private partnership that links all of the professionals involved in the donation and transplantation system.
The primary goals of the OPTN are to:
- increase and ensure the effectiveness, efficiency and equity of organ sharing in the national system of organ allocation
- increase the supply of donated organs available for transplantation
The United Network for Organ Sharing (UNOS) was awarded the very first OPTN contract on September 30, 1986, and has continued to administer the OPTN under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services for more than 16 years.
UNOS, through the OPTN government contract, is responsible for matching donated organs with critically ill patients on a national waiting list. Medical urgency, compatibility of blood chemistries, and body size are considerations in making the match.
The OPTN has a secure nationwide transplant database which contains pertinent information on the candidates that are on the waiting list. When they receive notification from an organ procurement organization (OPO) that a potential donor is available, they use the donor information to find a match to someone needing the type of organ to be donated. They take into consideration many medical factors of both the donor and recipient. The organ is offered to the transplant team (part of the OPO) of the first person on the list. It is then determined if timing, location, and other factors will work to make the match. If not, the second most likely candidate will be contacted. The database also helps to manage information on candidates who must receive a donation by a specific time.
More Detailed Information on the Matching Process
Organ Procurement and Transplantation Network
The Organ Transplant Waiting List
United Network for Organ Sharing
US Advisory Committee on Organ Transplantation
Only after your family doctor has determined that further life saving efforts would be futile or a pronouncement of death has been made, does an organ procurement organization and transplant team become involved. All life sustaining methods are used, as appropriate and as identified in the patient's living will.
When the organ transplant team becomes involved, trained professionals maintain the utmost respect for each donor and each donor family throughout the entire process. The donor's body is shown respect and the family is kept informed and is offered support by a trained professional within the organ procurement organization.
The U.S. Department of Health and Human Services has developed a list of circulating myths about organ donation.
Myth: Doctors will not try to save my life if they know I want to be a donor.
Fact: The medical staff trying to save lives is completely separate from the transplant team. Donation takes place and transplant surgeons are called in only after all efforts to save a life have been exhausted and death is imminent or has been declared.
|Myth: People can recover from brain
Fact: People can recover from comas, but not brain death. Coma and brain death are not the same. Brain death is final.
Myth: Minorities should refuse to donate because organ distribution discriminates by race.
Fact: Organs are matched by factors, including blood and tissue typing, which can vary by race. Patients are more likely to find matches among donors of their same race or ethnicity.
Myth: The rich and famous on the U.S. waiting list for organs get preferential treatment.
Fact: The computerized matching system does not select recipients based on fame or wealth. Organs are matched by blood and tissue typing, organ size, medical urgency, waiting time, and geographic location.
Myth: I am too old to donate organs and tissues.
Fact: People of all ages may be organ and tissue donors. Physical condition, not age, is important. Please sign a donor card; physicians will decide whether your organs and tissues can be transplanted.
Myth: My family will be charged for donating my organs.
Fact: Donation costs are not the responsibility of the donor’s family or estate.
Myth: Donation will disfigure my body.
Fact: Organs and tissues are removed in procedures similar to surgery, and all incisions are closed at the conclusion of the surgery. An open casket funeral is possible after donation.
Myth: Organs are sold, with enormous profits going to the medical community.
Fact: Federal law prohibits buying and selling organs in the U.S. Violators are punishable by prison sentences and fines.
Myth: Marrow donation is painful.
Fact: Marrow donors do not feel pain when the marrow is removed because anesthesia is used. Soreness and/or stiffness may be felt for a week or so post-donation.
The families of organ donors can arrange any type of funeral, memorial service, or other arrangements they would like. For those who would prefer an open casket, the organ donation site will not be visible. In some instances, there may be a slight delay in order to allow the organ or tissue "recovery" to take place.
If eyes are donated, the "recovery" is fairly quick. For bone and tissue donations, the "recovery" will add approximately 8 hours to the time before the body is transported to the funeral home. For organ donations the added time may be as much as 12-24 hours depending on multiple factors. The OPO will work with the family to be sensitive to their needs for the funeral and any memorial services.
Here are the steps.
- Discuss your intent with your family.
- Sign an organ donor card.
- Check with your Department of Motor Vehicles to see how to indicate your preference on your driver's license.
- Register your decision (see below).
- Identify your intent in your Living Will.
- Tell your doctor, faith leader, attorney, future executor, and friends.
Be sure to identify the desire to be an organ donor in your End of Life Plan.
There is no universally recognized national registry of organ donors. Most states now offer the opportunity to register as a donor through the driver license program or through independent state-run registries. However, registry may not be legally binding in some states. Be sure to check the law for your state. Laws vary from state-to-state on organ donation, even though there is a national registry for those who need transplants.
How to Become an Organ Donor in Your State
What Organ Procurement Organization Serves Me?
First Person Consent Legislation
This legislation allows donor designation to be indicated on a driver’s license (some states) or an officially signed legal donor document, which gives hospitals legal authority to proceed with organ procurement, even against the wishes of the family. No additional consent form is required. Please note that organ procurement organizations are sensitive to the issues related to organ donation and they realize the stress families are under at the time of death. They will try to work with families that disagree.