Organ Donation

Published on 09/04/2015 by admin

Filed under Hematology, Oncology and Palliative Medicine

Last modified 09/04/2015

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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