CHAPTER SIXTEEN

THE UNDER-12 RULE: A REVIEW ON THE PEDIATRIC LUNG ALLOCATION POLICY

Amy P. Pope

The case of Sarah Murnaghan sparked a major controversy in 2013. Sarah, a 10-year-old girl with cystic fibrosis (CF), was given weeks to live by her transplant surgeons if a lifesaving bilateral lung transplantation operation was not implemented. Her family initiated a media firestorm accusing the Organ Procurement and Transplantation Network’s (OPTN) policies on pediatric lung allocation to be discriminatory toward age (Lupkin, 2014). The policy at the time of the controversy stated that those children requiring lung transplantation receive lungs from a donor of a similar age (0–11 years) and were given either a priority 1 or 2 rating instead of a lung allocation score (LAS), which is what candidates older than 12 years of age are given (Snyder et al., 2014).

The case of Sarah led to a temporary restraining order invoked by the Philadelphia district court Judge Baylson, which resulted in a year’s suspension in the under-12 rule created by OPTN in 2005 (Halpern, 2013). This overruling allowed Sarah and 12 other children to be placed on two waiting lists: the pediatric and the adult lung transplant lists (Aleccia, 2014). However, the only child to receive adult-sized organs after the overruling was Sarah (Aleccia, 2014).

PURPOSE

The purpose of this chapter is to identify how the under-12 rule in place for pediatric patients requiring a lung transplantation came to fruition and how the aftermath of the media exposure on Sarah Murnaghan’s case affected the policy. Fieldwork on the subject is outlined, as well as a thorough literature review on the topic related to pediatric lung transplantation and allocation and an evaluation of the ethical implications of the policy is conducted.

Fieldwork Plan

This project was initiated by an interest in transplantation and the policies associated with this surgical intervention. The author was familiar with adult heart transplant patients and the associated policies due to her work as a bedside critical care RN; however, the desire to understand the pediatric aspect of transplantation was present. When the discovery was made on Sarah Murnaghan’s story, the project developed into an interest of understanding the process of changing an established policy, particularly, in the case of one that is ethically driven.

Fieldwork activities included the completion of thorough research on Sarah and her case through media outlets, YouTube videos, and scholarly papers. A review of past and present OPTN policies was also completed with the emphasis on lung transplantation. The minutes of an emergency meeting held by the OPTN and the associated documents were reviewed, and this provided the author with OPTN’s stance on the issue as well as valuable correspondence between OPTN and the Department of Health and Human Services secretary, Katherine Sebelius. Lastly, two prominent members of the transplant community were contacted, resulting in an e-mail conversation regarding the medical field’s opinion on the controversy and policy change.

Relevance to Nursing

Health care policy is central to a nurse’s approach to care. As Milstead (2013) notes, a nurse holds multifunctional roles as, “provider of care, educator, administrator, consultant, researcher, political activist, and policymaker,” and with these multiple roles, any change in health care policy affects nursing care (p. 2). The under-12 rule was accused of being discriminatory by the Murnaghan family in 2013, which violates the American Nurses Association (ANA, 2001) Code of Ethics principle that states that nurses are to act without discrimination toward each individual patient despite their “social or economic status, personal attributes, or the nature of health problems” (p. 7). With this allegation, nurses should take part in the evaluation of this policy and others similar to determine the truth and work in a team approach to propose revisions.

Additionally, the scarcity of organs creates ethically charged debates on how to appropriately allocate the resource. Despite advances in medical technology in recent years, there is still a need for transplantation for certain illnesses, which require stringent guidelines and long waiting lists for those needing the intervention. Therefore, the need to have a team of transplant experts to create allocation policies is imperative to ensure ethical and objective guidelines are in place. OPTN was designated as this source in 1984 (Mueller, 1989); yet in the case of Sarah, the lack of frequent policy review on OPTN’s part resulted in charges of discrimination.

Moreover, due to this resource shortage, nursing needs to be cognizant of the issues surrounding organ transplantation, whether it be for a child or an adult. The lack of available organs and the ethical principles of utility and justice surrounding organ allocation make it difficult to provide the desired treatment to every patient. Though nurses are ethically bound to each individual patient, they are also responsible for ensuring care is distributed fairly and appropriately to those who need it the most.

Nurses are a prevalent persona in the health care arena, helping to develop and implement laws and legislation related to health care. Therefore, when a politically charged controversy arises, such as Sarah’s, nursing needs to become an active player in not only the delivery of care, but ensuring the policies involved are ethically and legally appropriate.

THE HISTORY OF LUNG ALLOCATION POLICIES

The National Organ Transplantation Act (NOTA) of 1984 was written and made into law during a time when organ transplantation was fairly new and mainly used for the wealthy, as Medicare only provided reimbursement for kidney transplants (Mueller, 1989). There were also, similar to today’s transplant climate, scarce resources, which resulted in those who had money or political power to purchase organs through illegal avenues, like the black market. In the hopes to illegalize black market organ trades, NOTA was signed into law by President Ronald Reagan in 1984.

Additionally, NOTA established a contract between the U.S. government and the private agency, OPTN (Colvin-Adams et al., 2012). During the early years of transplantation, there were transplant programs and centers scattered across the United States with no overseeing body (Mueller, 1989). This created a lack of cohesiveness among programs as well as the inability to appropriately allocate organs and to collect data on transplant recipients. Therefore, the contract between the United States and OPTN established the OPTN as the overseeing body of the nation’s transplant programs and centers. These entities use the OPTN and its union with the United Network for Organ Sharing (UNOS) for national policies, wait-list placement, and national statistics and data analysis on organ transplantation (Devito, 2014).

Jumping ahead 20 years to 2005, a review of the lung allocation policies at that time was completed by the OPTN. Before 2005, lung donations were allocated based on a person’s length of time on the waiting list as well as proximity to the donor hospital, not by severity of their disease (Colvin-Adams et al., 2012; Sweet, 2009; Tomlinson, 2013). Therefore, the need was realized to change this policy, and the LAS was initiated into practice (Colvin-Adams et al., 2012; Sweet, 2009; Tomlinson, 2013). This score provided information regarding the severity of the candidate’s disease as well as their survivability after transplantation (Sweet, 2009). However, this was only for adult candidates, as those younger than 12 years were “felt to be significantly different than older patients” because of the differences in disease states as well as in size and stature (Sweet, 2009, p. 809). However, children were given a wider geographical boundary than their adult counterparts: 1000-mile radius from pediatric donor hospital compared with a 500-mile radius from an adult donor (Sokohl, 2010; Sweet, 2009).

After the institution of the LAS in adult patients, it soon became noticeable that children needed to have a change in policy as well, as they were still being transplanted based on waiting time. Therefore, the pediatric policy was reviewed in 2010 and rewritten to incorporate medical urgency by using a priority rating 1 or 2 (Sokohl, 2010). A child with a medical urgency need for transplantation was given a priority 1 rating, and this was based on clinical information or an exception made by the regional lung review board (LRB; Sokohl, 2010). The under-12 rule was the policy until 2013 when the Murnaghan family demanded a change.

As has been pointed out, a judge invoked a temporary restraining order on this pediatric allocation policy and allowed Sarah and 12 other children to become exceptions to this rule (Aleccia, 2014; Halpern, 2013). With this restraining order in place, OPTN held an emergency meeting on June 10, 2013, to review the policy and brainstorm ideas for proposing a revised pediatric lung allocation policy (Organ Procurement & Transplantation Network & United Network for Organ Sharing Executive Committee, 2013). The OPTN was given 1 year to revise the policy or allow the restraining order to expire, which would result in the reestablishment of the under-12 rule (Snyder et al., 2014).

On June 23, 2014, it was made into a permanent OPTN policy to allow children who were deemed an exception to the rule to be placed on the adult transplant list in addition to the pediatric list (Organ Procurement & Transplantation Network, 2015a). The new policy allows the transplant surgeon the ability to make the decision whether or not the child would be successful with an adult donor transplant with the provision of objective data to the LRB to prove his or her case. Once the LRB receives the information, they have 7 days to determine if the child is an exception. If it is denied, the surgeon may then request an exception from the Thoracic Organ Transplantation Committee. Once the child is considered an exception, they are given a LAS and placed on the adult waiting list as well as the pediatric list.

Forthcoming will be a literature review on the Murnaghan case; however, during the author’s fieldwork, an investigation on medical opinion regarding this policy change was conducted. Two prominent members of the transplant community were questioned on the current policy state of pediatric lung allocation. One member, a director of a southeast lung transplant program, who was also a member of the thoracic organ transplantation committee at the time of the controversy, supplied this answer via e-mail communication:

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