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Exploring organ donation with families of pediatric patients Use this evidence- based approach to help grief-stricken families make a critical decision. By Jessica Lee Barr, MSN, RN; Ariel Conners, BA, RN, CPN; and Caitlyn Cowart, MSN, RN, CCRN discussion AN END -OF -LIFE with any patient or family can be challenging. It’s likely to be even more difficult when the patient is a sick and dying child. Yet this tragic situation can lead to positive out - comes if the family chooses to save other children’s lives by donating their child’s organs and tissue after death. Effective education and communication with the families of potential pediatric donors can positively affect the lives of up to 60 patients per donor, exponentially touching hundreds of lives when you factor in family members. (See Pediatric organ donation: By the numbers .) This article offers advice on how to address organ donation with cultural sensitivity, dispel myths about do - nation, help families consider what their child likely would have wished, and guide families through the decision-making process in a way that can help them. Nurses’ role Nurses aren’t allowed to initiate conversations with families about organ donation, so you’re not responsible for providing education on this process. But even though you’re not part of the initial discussion and may never be called on to provide input, you need to be aware of how to best help families facing this difficult decision. American Nurse Today Volume 12, Number 10 AmericanNurseToday.com 6 Pediatric organ donation: Standard policy restricts all direct By the numbers patient-care team members from According to the U.S. Department of Health and Human Services, as of July 2017 initiating an organ donation discus - over 117,000 individuals are awaiting life-saving solid organ transplants in this sion with the patient and family. In - country. Almost 2,000 candidates on the waitlist are under 18 years old. stead, the nurse makes a referral to an organ procurement organization What a single donor can do (OPO). An OPO coordinator then One organ and tissue donor has the opportunity to save up to eight lives, give sight to two people, and improve quality of life for up to 50. approaches the family to discuss the possibility of donation. This By age policy not only helps shield hospi - The organs that children tend to need most varies by age: tal staff from perceived conflicts of • Most children younger than age 1 year are waiting for a liver or heart. interest, but it also helps protect • Most children ages 1 to 10 are waiting for a kidney or liver, followed by a heart. the family from the false hope of • Most children ages 11 to 17 are waiting for a kidney, followed by a liver. organ donation if the patient isn’t eligible. Nurses should, however, Giving and receiving be prepared to engage in a discus - • 1,878 children received transplants in 2016. sion at the family’s request after the • 934 children donated organs. They ranged from newborns to age 17. Most initial OPO approach. were age 11 to 17, but 135 were younger than 12 months. OPO coordinators are educated When matching organ donors to recipients, body size and the specific organ must extensively on all aspects of dona - be considered. Very small children typically receive donations from other young tion. The OPO coordinator will people; in some cases, older children and adults match. Some children can re - thoroughly answer all questions ceive donations of partial organs, such as part of a lung or liver. and correct misinformation the pa - tient and family might have. How - ever, some patients and families may feel unsure about the informa - Supporting the family considering tion they get from the OPO coordi - nator because they haven’t had a organ donation chance to establish a rapport with To help support the patient’s family during their decision, follow these tips. that person. After observing a nurse • Introduce the organ procurement organization coordinator to the patient’s providing excellent care for their family. loved one, they may wish to speak • Ensure the discussion occurs in a quiet, private environment. with that nurse before consenting • Assess how the family’s cultural, religious, and spiritual views might affect their to donation. You can help the fami - knowledge of and beliefs about organ donation. ly transition to the OPO coordina - • Give accurate information to correct misconceptions. tor’s primary role by introducing that person to the family. • Answer questions calmly. If you don’t know the answer, say you will find out and get back to the family. What the evidence shows • Provide emotional support by giving the family time to discuss their feelings. One study found that families are • Contact other resources, such as the hospital chaplain, as needed. more likely to consent to organ do - nation when the healthcare team involved in the child’s care is also parents (those who refuse organ chological support from healthcare engaged in the discussion about it. donation) reported being upset by providers are better able to cope Although these team members can’t having these conversations with the with the reality of their child’s be a part of the initial donation re - providers. death, which makes them more quest, they can aid in this process Other research suggests that likely to consent to donation. Bed - by expressing support and trust in grieving families are more likely to side nurses should strive to provide the OPO coordinator and by re - consent to organ donation if the this emotional support. maining engaged in the conversa - bedside nurse develops a trusting Families also were more likely to tion at the family’s request. Despite relationship with them, has a posi - consent to donation if they per - some healthcare providers’ percep - tive attitude toward donation, and ceived the healthcare provider as tions that they lack adequate com - effectively communicates that some - calm and knowledgeable about or - munication skills to discuss dona - thing positive can come from their gan donation when approached by tion, neither donor nor non-donor tragedy. Families who receive psy - family members. In general, donor AmericanNurseToday.com October 2017 American Nurse Today 7 Separating myths from facts health care providers as coldhearted To help promote organ donation, learn about the various myths surrounding this and insensitive when discussing crit - topic. Here are just a few. ical information. This perception may pose an obstacle in obtaining Myth Some religions and cultures don’t believe in or support organ donation. consent for organ donation. Fact The vast majority of religions and cultures endorse organ donation. All As appropriate, use such re - monotheistic religions allow donation. sources as the hospital chaplain or other religious representatives fa - Myth Organ donors can’t have an open-casket funeral. miliar with the family’s religious Fact Open-casket funerals are still an option for patients who donate organs. background to help clarify miscon - Myth Medical staff won’t be as determined to save the life of a patient who’s a ceptions about their religion’s designated organ donor. stance on organ donation. Social Fact No patient is considered for organ donation until all attempts at lifesaving workers also can visit grieving fami - measures have failed. lies to provide spiritual and cultural support. (See Separating myths from facts .) families were more likely than non- donor families to openly interact Research suggests What would the child have with and ask questions of health - wanted? care providers. that grieving families Unlike most adults, many children In a qualitative study of families don’t have the ability or opportuni - with chronically ill children, parents are more likely to ty to express their wishes about do - reported feeling under-informed to organ nating their organs. In this case, the during their child’s hospital stay. consent family has to make this difficult de - Many felt too intimidated to ask donation if the cision without knowing what their questions when nurses weren’t child would have wanted. forthcoming with updates or infor - bedside nurse You can provide supportive care mation about their child. This study by encouraging the family to con - also found that when families were develops a trusting sider the child’s attitude of generos - forced to request information, they ity. This can help them determine if commonly interpreted the nurse’s relationship with their child would have given assent attitude as begrudging or hostile. them. to donation and thus reduce their Caregivers should invest addi - burden as they consider whether to tional education time with families reported higher satisfaction rates and give legal consent. (Assent holds no to build a trusting relationship. Be a more positive perception of their legal weight.) While you should conscious of your tone of voice, at - relationship with healthcare pro vid - never try to sway the family based titude, and demeanor when speak - ers. Satisfaction scores were based on your own beliefs or feelings ing with them. Tailor your commu - on the healthcare provider’s ability about donation, helping the family nication in a way that matches their to provide information sensitively, consider whether the child would religious, spiritual, or cultural ex - patiently, and empathetically. have assented may help bring them pectations. The outcome of their closure and healing. decision to donate hangs in the bal - Cultural and spiritual ance. (See Supporting the family considerations Decoupling technique considering organ donation. ) Assess the patient’s and family’s reli - In studies, some parents reported gious, spiritual, and cultural prefer - uncertainty about consenting to do - Family satisfaction rates ences and beliefs around organ do - nation because they couldn’t accept The literature shows that establish - nation.

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