For 50 years, transplantation has saved the lives of thousands suffering from end-stage organ failure and enhanced the lives of even more dialysis patients. Since the first successful transplant of a kidney in 1954, more than 300,000 people have received organ transplants in the United States.¹ Organs can be donated by a deceased person who gave prior permission, by the family of a deceased patient, or a by living donor. Since 2001, on average, the number of living donors has surpassed the number of deceased donors annually. Both types exceed 6,000 a year, resulting in more than 12,000 donors a year.¹

The need

The disparity between the number of organs donated and the number of people waiting is enormous; the gap between transplanted organs and potential recipients is even greater. More than 90,000 people are on the national waiting list for an organ transplant. About 15,000 people annually are pronounced brain dead, that is, death based on neurological criteria. Only 6,000 of these brain-dead patients become organ donors. In addition, more than 5,000 of these deaths are never identified as potential donors. The families of the remaining decline the option. Because of the lack of available organs, many people die waiting for a lifesaving transplant. A single donor can provide the “gift of life” for up to eight people and enhance the lives of 50 or more through tissue donation. How, then, can health care professionals increase the proportion of donors? Research suggests that the key is the consent process.¹

Organ procurement organizations

An important participant in the entire donation process is the organ procurement organization (OPO). An OPO is involved in the consent process, cares for the organ donor and donor family, and supervises the recovery of transplantable organs. The OPO’s mission is to offer the option of donation, recover the donated organs, and distribute them in an equitable manner to transplant centers according to policies established through the Organ Procurement and Transplantation Network (OPTN) operated by the United Network for Organ Sharing (UNOS). Most OPOs also are involved in increasing awareness about organ donation and the organ shortage.²

Every transplant hospital in the United States is a member of the OPTN and must meet specific requirements. For example, there must be a transplant surgeon and physician with extensive training and experience in transplantation for each type of organ that the hospital transplants.

Some OPOs also facilitate tissue recovery directly or through the referral of a tissue, skin, bone, or eye bank. OPO and tissue personnel are available 24 hours a day, 365 days a year to help physicians, nurses, and other health care professionals involved in the donation process.

Highly specialized and trained OPO staff known as procurement coordinators, who often are nurses, provide the following services:

Making the decision to donate

Public awareness and education have encouraged more people to record their intent to become an organ donor. Under the Uniform Anatomical Gift Act, which all states have enacted in some form, every person has the right to document his or her wish to make anatomical gifts. A properly executed driver’s license and donor card are examples of this type of documentation and are considered to be legal. The most important element when making the decision to donate is to express your donation wishes to your next of kin or to someone who has durable power of attorney for you.

In recent years, a number of states have adopted legislation allowing one’s wishes to donate one’s organs, as indicated on a driver’s license or an official signed donor document, to override any opposition from family members.¹ However, even though more and more states have recognized the legal rights of donors, several OPOs — even with a donor designation — will not recover tissue and organs if the family adamantly opposes it.

Barriers to donation

A person (or the loved one of a potential donor) may decide against organ donation for several reasons. Some people believe that a donor designation could alter the medical care the patient receives in the hospital. Family members may fear that the donor will experience pain or be disfigured during the recovery process. Even concerns about cost can cause families to hesitate regarding donation. Knowing that a potential (brain dead or cardiac dead) donor is incapable of feeling pain and will not be disfigured, that only those people who are medically and legally dead can be organ donors, and that the patient and family will incur no cost associated with the donation can make a significant difference in the family’s decision-making process.

Families also may have difficulty deciding to donate their loved ones’ organs if they believe that their religion does not support donation. However, all major religions encourage organ and tissue donation, and the participation of clergy in the decision-making process may be helpful.

Health care personnel may have their own anxieties about being involved in offering a grieving family the option of donation. For example, they may be reluctant to intrude on the family’s grief for fear that they are increasing stress at an already stressful time. They may believe that they are unable to formulate the appropriate words with which to approach a family or may have difficulty explaining the concept of brain death. They may even fear rejection. Some professionals and their institutions may not fully support organ donation or may not see the need to offer the option of donation as a priority. Having a good working relationship with the local OPO will ensure that both the donor and the donor’s family are taken care of during this time of crisis.^2,5. 

The consent process: a collaboration between OPO and hospital staff

Working with the families of deceased donors can be an emotional challenge as well. The consent process, a collaborative effort between the OPO and hospital staff when carried out in a professional and caring manner, can be a positive experience for everyone involved.

General considerations: The manner in which the option of donation is discussed can significantly influence the ultimate decision. The family is distressed about the sudden loss of their loved one and must be approached with the utmost dignity, concern, and sympathy. The person who approaches the family must have an unwavering commitment to the organ donation process. Hesitation or reluctance on the part of the person offering donation can contribute to his or her own discomfort and fears. If families are approached inappropriately, potential donors can be lost. In an effort to encourage a collaborative approach between OPO and hospital staff in offering the option of donation, recent federal regulations mandate that the person who approaches a family must be trained.⁷

The collaborative approach8  can offer the option of donation knowing that donating organs or tissues of a loved one can bring a sense of comfort. Nurses, such as those in critical care areas, are usually the most familiar with the family and are often the caregivers who have established a close and trusting relationship with them. Because of this closeness, nurses may be the most sensitive and appropriate people to assist the OPO in the approach to offer donation to the family.

Decoupling: “Decoupling” is separating the discussions about imminent or present brain death from discussions about donation. By decoupling death from the request for donation, the misconception that the pronouncement of death has been made for the purpose of procuring the organs is avoided. After brain death is explained and discussed, the idea of organ donation can be introduced but not dwelled upon. An immediate response or answer is not expected. The donation advocate suggests to family members that they need to make certain decisions shortly, such as those about funeral plans, memorial services, and organ donation.

Recommendations to assist health care professionals be active participants in the consent and reach out to grieving families in a sensitive, informative, and sincere manner during this process include:

1. Having the hospital notify the OPO of patients with imminent death. Early referral to the local OPO can mean the difference in a successful donation process.

2. Knowing the patient’s condition: Before a family is approached, the OPO’s donation advocate and hospital staff should be fully informed of the patient’s condition and prognosis. Discussing donation with a family when they believe that there is still hope for recovery may result in the family’s declining donation. Making a request too early may cause family members to distrust the care that is delivered and believe that providers are not doing everything that could and should be done to help save the patient’s life.

3. Deal with your own feelings first: If you know you will become involved in the donation process and have questions or strong feelings, it is important that you consult a donation advocate before approaching the family. Remember that donation is a positive option for the loved one’s family. It gives them the opportunity to find peace in their loss.

4. Understand that timing is everything: The time between the patient’s injury and death declaration is an extremely sensitive time for the family. Health care professionals should provide the family with support and privacy. It is important that the option of donation not be given to the family prematurely.

5. Choose the appropriate setting: Ideally, a quiet, private room should be used. When the timing is right to offer donation, family members should be seated in a comfortable area away from the bedside and apart from visitors. Only those directly involved in the decision-making process should be present with the exclusion of friends unless the family specifically requests their attendance. The presence and support of clergy should be offered. Amenities such as comfortable seating, tissue paper, and phone access should be provided. All participants, including family, clergy, medical personnel, and donation advocates, need to be introduced by name and position.

6. Assemble the appropriate support: It is best to involve a donation advocate when the family initiates the discussion of donation. The family will need the appropriate donation-related information to make an informed decision.

7. Allow a break: After the donation option has been presented and questions have been answered, the family may need time to consider donation privately. Provide privacy, but remain close by until a decision has been made.

Do not approach a family when the family is in denial and cannot accept the death. Organ donation is a decision for the family, not the health care professional, to make. A family’s decision not to donate is not to be considered a failure by the donation advocate. It is more important that the family’s decision is based on factual information and not on myths and misconceptions. The only failure that occurs is when the family is never offered the donation option.

The way in which a family is approached can be the deciding factor for organ donation. Families who are given accurate, truthful information, who have their questions answered, and who believe that they have been treated with honesty and respect are more likely to respond positively to organ and tissue donation. The bedside nurse is probably the most important person in this process. Nurses are most likely to initially identify a potential donor, call the referral to the OPO, and be involved in offering donation because of their relationship with the family.

Families can benefit from their decision to donate. Beyond altruistic satisfaction, they may find solace and comfort in knowing that their loved ones can live on through others, and nurses can know that their participation helped this act of kindness to occur.^4,5

Brain death, cardiac death, and DCD

Brain death, determined by neurological criteria, and cardiac death, defined by the absence of cardiopulmonary function, are both legally and medically valid declarations of death. In many states, brain death is defined as total cessation of cerebral and brain stem function. Usually, with the exception of donation after cardiac death (DCD) donors, organ donors are patients who have been pronounced dead according to neurological criteria.

Generally, patients who are referred to the OPO after cardiac arrest are considered to be eye, tissue and/or bone donor candidates only. These donors cannot donate organs, as the organs would need to be continually oxygenated and perfused (e.g., brain dead donors) to be viable for transplantation purposes. 

Candidates for DCD donation, on the other hand, are ventilator-dependent, brain-injured patients who never progress to brain death, have very little brain function, have no hope of survival, and whose family elects to remove them from all life-support mechanisms. After consent and careful evaluation by the OPO, DCD donors are pronounced dead when they have cessation of cardiopulmonary function following withdrawal from life support. They have no perfusion to their organs and require rapid or immediate recovery of organs.

The following are recommendations when dealing with a DCD donor to avoid conflicts of interest:

1. The discussion of organ donation with families and the informed consent process should take place only after an independent discussion to withdraw life support has been made.

2. The physician responsible for the declaration of death after withdrawal of support is not to be affiliated in any way with the recovery or transplant surgery.

3. No expenses should be incurred by the family during the process. A procurement team is available when withdrawal of support occurs and typically can wait for death to occur for up to one hour (actual time determined on a case by case basis by the OPO and transplant surgeons) after withdrawing life support. If the patient does not go into cardiac arrest within 60 minutes, the team will return the patient to the critical care unit or other predesignated location, where comfort care will be provided, and the family will resume responsibility for expenses incurred thereafter.

4. DCD donors receive the same standard-of-care treatment as any other patient undergoing withdrawal of life support. In the past, administering morphine before death gave the impression that morphine was used to hasten death. However, because most hospitals administer comfort care such as morphine during the process of withdrawing life support, the same hospital standard should be applied in the DCD protocol according to the orders of the attending physician.

One of the biggest challenges the procurement team faces is the patient’s family wanting to be with their loved one when death is declared. During the DCD process, organ procurement begin minutes after death is declared; therefore, life support is often withdrawn in or near the operating room. Medical personnel need to be sensitive to this time frame while addressing the family’s needs with the hospital and operating room staff. All efforts should be made to ensure viable organ recovery while still attending to the  family’s needs in their time of crisis.

It is the hope that these recommendations will help reduce the severe shortage of available organs. Patients who are pronounced dead by DCD criteria can be kidney, eye, bone, skin, tissue, liver, pancreas, and sometimes lung donors.⁶

Words to avoid

Certain words and phrases may lead to confusion, mixed messages, and wrong impressions. When speaking to the family, avoid the following words and use appropriate substitutions.

Harvest — Use procure or recover.

Cadaver — Use body.

Cadaveric - Use deceased.

Cutting — Use surgical removal or incision.

Expired — Use died.

Life support — Use ventilator or breathing machine when dealing with a brain dead patient.  When a patient is brain dead, there is no life to support.

Avoid phrases such as expired, gone, almost dead, nearly dead, only brain dead, or not totally dead. Instead, simply use dead.

For more information on organ donation, call (888) TX-INF61. To obtain an organ donor card, call (800) 355-7427. Information is also available on the following websites: www.unos.org, www.optn.org, and www.transplantliving.org.