Organ Donation

Published on 09/04/2015 by admin

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24 Organ Donation

Amy Durall

The world is round and the place which may seem like the end may also be the beginning.

—Ivy Baker Priest

Organ transplantation is a potentially life-saving treatment option for those with end-stage organ failure. When organ transplantation began in the 1950s, kidneys were procured from either living related donors or from patients who suffered cardiopulmonary arrest after illness or injury. Legislation, passed in 1968 in the Uniform Anatomical Gift Act, authorized individuals to donate all or a part of their or a family member’s body after death for education, research, therapy or transplantation. The Act was revised in 1987 to reflect changes in practice. Subsequent revisions in 2006 emphasized an individual’s donation rights as described in the previous versions of the Act. In addition, language prohibiting others from overruling a person’s decision regarding organ donation after his or her death was reinforced.¹

In 1984, The National Organ Transplant Act was approved, establishing the Organ Procurement and Transplantation Network (OPTN). The OPTN is responsible for the nationwide, equitable distribution of organs for transplantation using specific allocation policies.² Due to advances in surgical technique and immunosuppression therapy, the number of organ transplantations has grown, with both early and late outcomes improving.³ Since 1998 there have been more than 460,000 transplantations in the United States: 78 percent were from deceased donors and 22 percent were from living donors. Patients less than 18 years of age comprised nearly 8 percent of the total number of transplants. Furthermore, approximately 7 percent of organ recipients from deceased donors and 9 percent of organ recipients from living donors were children.² However, the demand for organs continues to exceed the supply, and patients die awaiting transplant.³ As of August 2009, there were approximately 103,000 people awaiting transplantation, of which 1,800 were pediatric patients.²

In this part of the chapter, we will discuss the complexity that surrounds organ donation, including: religion, race and ethnicity, the perspectives of individuals involved in the process, and the role of interdisciplinary communication.

Factors Influencing Willingness to Donate

Multiple studies have evaluated factors that influence a person’s willingness to donate his or her own or a family member’s organs.⁴^–¹⁰ There are specific patient and family characteristics, beliefs, attitudes, and experiences that have been identified as positively correlated with consent to organ donation^4,^6,^8,^11,¹² (Box 24-1).

BOX 24-1 Factors Associated with Consent to Organ Donation

• Sense of altruism

• Perceived good quality patient care

• Understanding the concept of brain death

• Families given enough information and time to make an informed decision

• Separation in the timing of discussions relating to brain death and organ donation

• High level of interpersonal skill of the person making the donation request

• High level of trust in the physician and healthcare system

• Communication with others about organ donation preferences

• Younger patient

• Private location to hold organ donation discussions

• Families being informed of the potential to help others

• Death resulting from trauma

• Increased knowledge about organ donation and transplantation

Further-reading

Alden D.L., Cheung A.H. Organ donation and culture: a comparison of Asian American and European American beliefs, attitudes, and behaviors. J Appl Soc Psychol. 2000;30(2):293-314.

Jeffres L.W., Carroll J.A., Rubenking B.E., Amschlinger J. Communication as a predictor of willingness to donate one’s organs: an addition to the Theory of Reasoned Action. Prog Transplant. 2008;18(4):257-262.

Siminoff L.A., Lawrence R.H., Arnold R.M. Comparison of black and white families’ experiences and perceptions regarding organ donation requests. Crit Care Med. 2003;31(1):146-151.

Simpkin A.L., Robertson L.C., Barber V.S., Young J.D. Modifiable factors influencing relatives’ decision to offer organ donation: systematic review. BMJ. 2009;338:b991.

Thornton J.D., Wong K.A., Cardenas V., Curtis J.R., Spigner C., Allen M.D. Ethnic and gender differences in willingness among high school students to donate organs. J Adolesc Health. 2006;39(2):266-274.

A principal limiting factor to organ donation is the low percentage of families who agree to organ donation. Several factors have been associated with refusal to donate5,^6,^8,¹² (Box 24-2).

BOX 24-2 Factors Associated with Refusal to Donate Organs

• Poor communication between healthcare providers and family members

• Emotional exhaustion

• Religious beliefs

• Family’s belief that a patient would not have wanted to be an organ donor

• Family’s perception of uncaring healthcare providers

• Feeling pressured to make a decision

• Families being told that healthcare providers are required to ask about donation

• Potential for disfigurement

• Poor timing of the request

Further-reading

Siminoff L.A., Gordon N., Hewlett J., Arnold R.M. Factors influencing families’ consent for donation of solid organs for transplantation. JAMA. 2001;286(1):71-77.

Siminoff L.A., Lawrence R.H., Arnold R.M. Comparison of black and white families’ experiences and perceptions regarding organ donation requests. Crit Care Med. 2003;31(1):146. 11

Simpkin A.L., Robertson L.C., Barber V.S., Young J.D. Modifiable factors influencing relatives’ decision to offer organ donation: systematic review. BMJ. 2009;338:b991.

Overall, there are many complex, interactive variables involved in a person’s willingness to donate. It is important for the medical team to understand how these factors may influence the organ-donation request process.

Religiosity

Religion encompasses principles and traditions that are related to God or a higher power.¹³ Most major religions support organ donation,^11,^13,¹⁴ but a significant number of people cite their religious beliefs as a reason not to donate.^8,^11,^13,¹⁵ In particular, persons who are concerned about maintaining the body’s integrity after death and/or believe that organ transplantation is against God’s will have more negative attitudes toward organ donation.^11,^13,¹⁵ Many religions consider organ donation to be an act of compassion and altruism; one that is permissible because of the life-saving potential. Although many religions encourage their members to be donors, the decision is ultimately left up to the individual.^13,¹⁴ The role of religiosity as a positive or negative influence in the organ-donation process has been explored, with many conflicting conclusions.^8,^11,^13,^15,¹⁶ This may be due to an incomplete understanding of the complex interactions among religion, societal norms, family dynamics, and personal organ-donation beliefs.¹³ Despite conflicting data, religion is a part of many peoples’ lives and religiosity may indeed influence perspectives on organ donation. It is essential for the medical team to understand and respect the religious beliefs of patients and families in order to provide unconditional support during the decision-making process. When appropriate, it may be helpful to encourage the involvement of a religious adviser to dispel any misconceptions.

Race and Ethnicity

Studies have shown differences in attitudes toward organ donation as well as the process itself in persons of different racial and ethnic backgrounds.^8,^11,^12,^15,¹⁷^–¹⁹ Differences include knowing the patient’s organ-donation preferences, communication with the healthcare team, and trust in the healthcare system. Studies have shown that individuals from minority racial and/or ethnic backgrounds are less willing to donate their organs, are less likely to discuss organ donation with family members, and are less likely to carry a donor card compared with whites.^8,^11,^12,^17,¹⁹ In addition, minority individuals tend to have less trust in the healthcare system. For example, more minorities than whites believe that doctors will not try as hard to save a person’s life if doctors know that person is willing to be an organ donor.^12,¹⁵ Furthermore, blacks are less likely than whites to agree that doctors can be trusted to pronounce death correctly when a patient is eligible to be an organ donor.¹⁷

One study evaluating the experiences of black and white families found discrepancies in the communication process at the organ donation request. White families initiated donation discussions more often than black families. In addition, black families felt more pressure to make a decision. Although the number of total discussions was the same for black and white families, fewer donation-related topics were discussed with black families. For example, black families were less likely to have spoken with a chaplain or an organ procurement organization (OPO) representative.¹² This could have a significant impact upon the donation process because speaking to and spending more time with an OPO representative is strongly associated with families’ willingness to donate.⁵ In addition, black families were less likely to have discussed two specific issues: families are not responsible for the costs of donation, and the impact of organ donation on funeral arrangements. These discussions may help dispel misconceptions about the donation process and could affect a family’s willingness to donate.

Inconsistencies are present in the organ donation request process for individuals of different ethnic and racial backgrounds. Compared with whites, minorities may have different beliefs about organ donation based on their experiences and lack of trust in the medical system. Consequently, medical professionals need to understand these issues in order to eliminate barriers in the organ donation process for all individuals, regardless of race and ethnicity.

Parent and Adolescent Perspectives

In 2006, children under the age of 18 years made up 12% of the donor organ pool, and more than half of those were aged 11 to 17 years.³ As such, it is important for healthcare providers to appreciate the perspectives of children and their parents regarding organ donation. Studies from various countries have shown that many adolescents believe that transplantation is an acceptable practice that could provide benefit to others.^20,²¹

Many students are willing to donate their own organs to help others.²¹^–²³ Students who either oppose organ donation or express discomfort with the issue do so because of distrust, lack of information, uneasiness with a body being cut up, fear of being disrespectful to the deceased, discomfort of having one’s organs in another body, and fear of not being dead.^22,²³ Despite some knowledge about organ donation and transplantation, students would like to be better informed on the topic and many believe that it should be included in the school curriculum.²¹^–²³ Consequently, many schools have established organ donation educational programs for their adolescent students, which have been met with a favorable response.^20,²²^–²⁶ Furthermore, teenagers who were involved in these programs were more inclined to register as organ donors, had greater knowledge of the topic and had more positive opinions regarding organ donation than students who did not participate.^24,²⁵

One study examined a number of domains concerning organ donation and transplantation such as knowledge, personal experience, and attitudes.⁸ Differences in ethnicity, gender, religious views, and other factors were assessed. Approximately one-fourth of students who had driver’s licenses or learner’s permits had designated themselves as organ donors. Girls were more likely than boys and white students were more likely than minority students to have signed an organ donor card. Among those who intended to be donors, only slightly more than half shared this with their family. All students had a low level of knowledge regarding organ donation, allocation, and the transplantation process. For instance, more than half of all students believed that organs are bought and sold in the United States. Nevertheless, several positive predictors of willingness to donate were identified: female gender, white ethnicity, not religious, previous organ donation discussions with family and friends, increased knowledge of organ donation and a wish to receive a transplant, if necessary.⁸

The decision to donate a family member’s organs is influenced, in part, by whether or not the decision maker is aware of the wishes of the potential organ donor.^5,^7,¹² Families with knowledge of the patient’s wishes are more likely to agree to donation.^5,⁷ However, many people do not discuss their preferences with their family and this may make the decision difficult.⁷ Although many adolescents are willing to discuss the subject with their parents,^21,²² anxiety and discomfort about death and organ donation could be a barrier to adolescent-parent communication. To address this issue, a study examined the impact of a school-based program to assist students aged 11 to 18 years in initiating organ donation discussions with their families.²⁶ Approximately one-third of students thought that the discussion went “OK” and over half believed that it “went very well.” Initiating the conversation was the most difficult aspect of the discussion for many of the students, and feelings of anxiety, discomfort, and unease were expressed. Talking about death, either one’s own or another’s was also difficult. Interestingly, a small number of parents became angry or refused to discuss the topic. Positively, the students and their parents were able to talk about things that they had never discussed before. This study illustrates barriers to communication about death and organ donation between adolescents and their parents. Despite some difficulties with these conversations, there were positive aspects, such as overall enhanced communication within the family.²⁶ Encouraging adolescents and their parents to engage in such conversations may assist families if they are ever in the position of making a decision regarding organ donation.

While there has been progress in understanding the perspectives of adolescents, there is a paucity of data regarding the meaning of organ donation in younger children. This is an important understudied area of investigation that could benefit from formal research.

In addition to children, it is important to understand the perspectives of parents. A research team conducted interviews with 74 parents who had previously been approached about donating their child’s organs.²⁷ Parental characteristics that were associated with a higher likelihood of consent included no college education, interest in organ donation for themselves, and a complete understanding of brain death. Having rapport with the person requesting the donation was also associated with a favorable decision. With regard to communication, parents were more likely to consent to organ donation when they perceived the timing of the request to be appropriate, when they had enough time to discuss their decision with others and when there was no conflict within the family about the decision. The majority of parents were satisfied with their decision but, interestingly, 10% of those who consented to organ donation would not make the same decision again; 16 percent of those who had declined now wished that they had agreed. Thus, a parent’s decision to donate their child’s organs is influenced by a number of factors, including satisfaction with the healthcare team, requestor characteristics, and the communication process.²⁷

Pastoral Care Perspectives

Hospital chaplains are valuable members of the healthcare team and their involvement in the organ donation process can be extremely beneficial to a patient’s family. Chaplains are especially skilled in communication, providing support to bereaved families, and being sensitive to ethnic, cultural, and religious values.²⁸

To better understand the perspectives of clergy toward organ donation, researchers surveyed 110 hospital chaplains to assess their level of participation in organ donation.²⁹ The likelihood of chaplain participation in the organ donation process of a brain-dead patient was approximately 50%. Interestingly, the level of participation was slightly less in the chaplains who served in university-based hospitals rather than in other settings, such as private or community hospitals. The reasons for this difference were not evident but it was speculated that brain death was an infrequent event in non-university hospitals and chaplain participation was desired more often. Many chaplains believed that they should take a purely supportive position and should not be primarily involved in approaching the family to request organ donation. However, several university-based chaplains believed that they could take a more active role in the organ donation process.²⁹

In addition to participation, attitudes and religious issues were explored. Respect of the donor and not viewing the donor as a means to an end were very important to chaplains. Most chaplains viewed organ donation as consistent with their religious values. Some believed their role was to protect a family’s decision to decline organ donation on religious grounds. Apart from their religious views, chaplains were concerned about families being coerced during the decision-making process, and considered themselves advocates for the patient and family. Another important concern among chaplains regarded the timing of organ donation discussions. Many chaplains believed that families were approached about organ donation too soon after their loved one’s death. In some cases, the families were not given enough time to come to terms with the patient’s death. Overwhelmingly, chaplains believed that they could be extremely valuable because of their training in grief and crisis counseling.²⁹

Social Work Perspectives

Social workers play a key role in the transplantation process by evaluating the psychosocial profile of potential transplant recipients and then helping recipients and their families cope with the implications of transplantation. Furthermore, social workers meet with family members of potential organ donors to assist them in the decision-making process and to support them in their grief.³⁰ Social workers can also assist the medical team by educating clinicians about ethnic and cultural issues pertaining to organ donation. In addition, social workers can assist the medical team as they deal with their own emotions surrounding dying patients and grieving families. Social workers are an essential part of the clinical team.^30,³¹

Nursing Perspectives

The organ-donation process involves a complex set of interactions among the medical team, patients, and their families. Nurses are an integral part of the healthcare team and are directly involved in this process. They may have a significant impact upon end-of-life care and, more specifically, organ donation. Because of the large amount of time that the bedside nurse spends interacting with the patient and family, nurses are in a strong position to provide support to families considering organ donation.^7,³² Nurses focus on respect and dignity of the potential organ donor and their family. In fact, they view protection of these individuals as one of their major responsibilities.³³ However, nurses may not be comfortable in this role due to lack of experience in this area, deficient education about the topic, and their own personal views of organ donation. Strategies to assist nurses in this role include educational programs related to organ donation, programs to improve communication skills, and ensuring a work environment that promotes excellent end-of-life care. Intensive care unit leadership must promote a culture that recognizes nurses as valued members of the team. As such, the bedside nurse should be present at family conferences, nurse performance evaluations should include end-of-life care skills, patient assignments must promote continuity of care, and unit policies and guidelines regarding the care of potential organ donors must be readily accessible.³²

Physician Perspectives

Physicians are responsible for coordinating patient care within the interdisciplinary medical team. As part of that responsibility, physicians must assure accurate and consistent transmission of information among members of the medical team, the patient, and the family. Initiating the request for organ donation has typically been the responsibility of the attending physician. In 1998, changes in federal regulations concerning organ and tissue donation stipulated that individuals initiating the organ donation request process must be properly trained.³⁴ This was misinterpreted by some to mean that only OPO staff members could approach families, excluding physicians from the process.⁹ However, there now appears to be more of an understanding that request for donation is a collaborative process between OPOs and the medical team. The physician’s relationship with the family is invaluable, but so is the training and skill of the OPO representatives. An important physician responsibility is to incorporate OPO staff members into the medical team and coordinate efforts in the organ request process.⁹

Organ Procurement Organizations’ Perspectives

There are 58 OPOs in the United States and Puerto Rico.³⁵ These organizations serve a specific geographic area and coordinate organ procurement efforts. Specifically, OPOs evaluate potential organ donors, discuss donation with families, facilitate surgical removal and preservation of donated organs, and coordinate their distribution according to national organ sharing policies.³⁶ Factors that are important for success of OPOs include experienced leadership, adequate staffing, allocation of responsibilities, strong relationships with donor hospitals and transplant centers, and support of donor families. Highly efficient and successful OPOs have a management team that is focused on the donation process, systems for monitoring activity and tracking outcomes, and efficient mechanisms for resolving conflict with hospitals and within the organization itself.³⁷

The United States Health Care Financing Administration changed the federal Conditions of Participation for tissue and organ donation such that hospitals must notify their OPO of any patients who are potential donors. The intention was to increase OPO referral rates so that all families would have the option of tissue and/or organ donation. Furthermore, the person making the donation request must be adequately trained to do so. This stipulation was based on evidence that suggested healthcare providers lack sufficient knowledge and training to effectively approach families about organ donation.⁹ Involvement of the local OPO is imperative to the process, and families have reported that discussing organ donation with an OPO representative is crucial to their decision-making process. In fact, talking with an OPO staff member prior to the request for organ donation and spending more time with an OPO representative have been positively correlated with the decision to donate.⁵

Ethical Considerations

Many complicated ethical issues surround organ donation and transplantation. Laws and regulations have been put forth to increase organ donation in light of the shortage of organs. It is imperative to identify the correct outcome measure. For instance, ethical quandaries may arise if the desired outcome is increased consent rate. Focusing on consent rate is problematic because the decision to decline organ donation is seen as negative. Conflicts of interest may occur because efforts to increase consent rate may divert attention away from the best interests of the patient and family. When the primary outcome is improving the process itself, however, then the decision to decline donation is no longer seen as negative.⁹ Another issue is the timing of organ donation discussions. Discussions informing families of brain death testing and death should be independent of organ donation requests. The concern is that if the subjects are discussed concurrently then questions arise as to whose interests, the potential donor’s or the potential recipients’, take precedence. The medical team should have an understanding of the pertinent ethical issues so that the best interests of the potential organ donor and their family are maintained.

Discussing Organ Donation with the Family

Joey was a bright and energetic 7-year-old. One Saturday morning he was riding in a car to baseball practice with his dad. It started to rain and Joey’s dad lost control of the car when the road became slippery. The car rolled over several times and, unfortunately, neither Joey nor his dad was wearing a seatbelt. When rescuers arrived at the scene Joey was in cardiopulmonary arrest. He was resuscitated and then transported to a pediatric trauma center while his dad was transported to a nearby hospital with serious injuries that were not life-threatening. Joey’s initial assessment demonstrated a severe traumatic brain injury, and it was a distinct possibility that he might progress to brain death. The attending physician, Dr. Smith, Joey’s nurse, and the unit social worker met with Joey’s mom, updating her on Joey’s clinical status and poor prognosis. As the day progressed, Joey showed no neurologic response, and his exam was consistent with brain death. The clinical team contacted the local OPO and a member of its team came to the hospital to offer expertise. Dr. Smith met again with Joey’s mom and gently explained the results of the test and the fact that a second brain death exam would be conducted after a number of hours. Joey’s mom was devastated and quietly acknowledged her son’s condition. At this time, Dr. Smith told Joey’s mom that she would like to tell her about an opportunity to help others through organ donation. Dr. Smith explained the process and assured Joey’s mom that no matter what decision she chose, the clinical team would respect and fully support her decision. In addition, Dr. Smith encouraged Joey’s mom to take as long as she needed to think about the situation and that the team was always available to answer any questions. Joey’s mom was receptive to the idea and agreed that she needed time to think about it. After a short period, Joey’s mom told Dr. Smith that she was interested in Joey being an organ donor but that she wanted to speak with Joey’s dad about it. Dr. Smith offered to walk with Joey’s mom over to the hospital where Joey’s dad was admitted. On the way, Joey’s mom spoke very little. The silence made Dr. Smith uncomfortable but she followed the cues from Joey’s mom and allowed her to guide the amount of discussion. At the hospital Dr. Smith discussed Joey’s condition and the results of the brain death exam with his dad. Joey’s dad was heartbroken and agreed that Joey should be an organ donor. Dr. Smith accompanied Joey’s mom back to the children’s hospital, respecting the silence as they walked.

Approaching a family about organ donation is never an easy process and no two conversations are the same. Every patient, family, and set of circumstances is unique and this requires the clinical team to adjust its approach to the discussion based on the situation. Several approaches have been put forth, including the standard approach, the presumptive approach, and dual advocacy.³⁸^–⁴⁰ The standard approach may be described as value-neutral and unbiased. The organ donation discussion is balanced and the goal is to help the family reach the choice that is best for them.^39,⁴⁰ On the other hand, the goal of the presumptive approach is to increase the number of organs available for transplantation. Requestors view themselves as advocates for both donors and recipients. There is a shift from value-neutral language to value-positive language, and the discussion is biased toward supporting organ donation.^39,⁴⁰ Dual advocacy considers the interests of both donors and recipients and promotes the family’s right to make a decision based on complete information, including the positive impact that organ donation can have. Dual advocacy recognizes that requestors must also consider the needs of the family.³⁸ Currently, there is controversy concerning the best way to approach families.³⁸^–⁴⁰ Some believe that in order to respect the rights of patients and families, clinicians must be fully transparent, fair and evenhanded in discussions with families regarding organ donation.³⁹ This philosophy most closely aligns with the standard approach⁴⁰ (Box 24-3).