Autopsy - Clinical Tree

Something can come out of the child's death that will help others. I feel good knowing that it (autopsy) could help to prevent this from happening to another child or family. —Quotes from parents whose children died of a rare brain cancer, and whose tumors were collected at autopsy

Post-mortem examination or autopsy, meaning to see for oneself, has been an important foundation of medicine since ancient times. Descriptions of autopsies have been found as early as the third century bc. However, it was not until the middle of the nineteenth century that pathologists started to follow strict scientific methods to perform autopsies. Although autopsies had been considered standard practice until the middle of the twentieth century, most recently the hospital autopsy rates for adults have been steadily declining, particularly in Western countries. The decline in autopsy rates has been attributed to multiple causes, including:

The belief that the procedure is less relevant in face of technological advances,
The procedure's cost,
Lack of time and expertise among pathologists,
Lack of experience and interest among clinicians to pursue consent from families,
Concern that autopsy could upset bereaved families or create litigation.

Unlike adults, the decline in autopsy rates has been less pronounced in the pediatric age group. Although autopsies in adults and children share some common goals, this procedure has particular characteristics and may serve specific objectives when performed in children, particularly for the grieving family.

Unique Characteristics of Autopsies in the Pediatric Age Group

The description of the characteristics of autopsy in the pediatric age group, including consent process, objectives, and perspective of families and physicians about the procedure, is more complex than that for adults. Whereas the attributes of this procedure in adolescents and young adults may be very reminiscent of those in older adults, there are unique characteristics associated with this procedure in younger children, especially in neonates and infants. A competent review of some of the issues surrounding autopsies in children is available. Unlike past times when childhood mortality accounted for most deaths within the community, the advances of modern medicine have transformed the death of a child into an uncommon event, at least in developed countries. The unexpected death of a child commonly brings upon parents or relatives the feeling of guilt or blame, which is generally unjustified. After all, the rearing of children in modern societies is so dependent on parents or guardians that the death of a child is commonly attributed to direct or indirect fault of an adult. The death of a child, particularly at an early age, can commonly raise concerns among families about genetic disorders and/or predispositions, which may have caused or contributed to the child's demise. The latter issue is of particular importance for parents who are still of their reproductive age and information obtained during autopsy may help their decision making about having additional children. In all the situations previously described, the results of the autopsy may be helpful for families, whether or not the procedure is able to confirm the cause and contributing factors of the child's death. Finally, sometimes the death of a child is unexpected and cannot be attributed with certainty to any specific cause. In that case, an autopsy may be required for forensic reasons to ascertain the cause of death, such as in cases of sudden infant death syndrome (SIDS).

Factors that influence consent to autopsy in children

The success in obtaining consent for autopsy in children is influenced by the interaction of multiple factors within society, the families of the deceased children, and the team of healthcare providers. It is also dependent on the context and characteristics surrounding the death of the child. It is essential to emphasize the variability in public attitude toward autopsy in different countries and sometimes within the same country, which are based on secular and religious characteristics. Different religions have more or less permissive attitudes toward autopsies. Whereas some religions place limitations on autopsy because of the need to bury all body parts within a short interval, several other religions pose no obstacles toward this procedure. Culture consists of a set of shared values, beliefs, attitudes, goals, and behaviors that characterize a human group. Cultural influences, which are very difficult to quantify, are presumed to affect the acceptance of autopsies by families. Although very little has been described about how culture influences the consent for autopsy, two studies addressed some of the subtle cultural differences between Hispanics and non-Hispanics, which affected the rates of consent to autopsy. In my own practice, I have not been able to clearly determine the influence of cultural background on the rate of consent to autopsy. Anecdotal reports from physicians in several developed countries or regions in Europe and South America describe their difficulties in obtaining consent to autopsies, which were attributed to cultural influences. Further study is required to address the influence of cultural factors in pediatric autopsy.

The success or failure to obtain consent to autopsy is also dependent on the setting in which it takes place and who is asking for consent. Unfortunately, the responsibility for initiation of the process for consent to autopsy commonly relies on a junior physician, who is unfamiliar with the deceased child and inexperienced in addressing issues associated with autopsy. Success in obtaining consent to autopsy is more likely to occur when this task is undertaken by a healthcare provider who was directly involved in the care of the deceased child and/or acquainted with the family. That may be the primary physician, a nurse, a social worker, or a bereavement counselor. Several studies have also demonstrated that more experienced physicians have more positive and accepting views of the procedure than junior colleagues, which may have an an impact on their success rate of persuading families about the importance of autopsy. However, no study to date has shown a better success rate in obtaining consent to autopsy among more experienced compared to junior physicians. The involvement of the pathologist who will perform the autopsy may benefit bereaved parents in their decision to consent. Pathologists do not directly participate in the care of children, nor are they acquainted with the child's family. However, their abilities to provide accurate details about the autopsy, including the procedure, aspects related to removal and retention of tissue and organs, and planned tests, add transparency to the process and help in the family's decision.

One study analyzed maternal and infant factors that could be determinants of parental autopsy consent after neonatal death in a large tertiary center. Whereas history of previous perinatal loss or abortion was significantly associated with an increased consent rate to autopsy, low gestational age, extreme prematurity and/or low birth weight, and death due to extreme prematurity were significantly associated with failure to obtain consent to autopsy. On the other hand, none of the socioeconomic characteristics analyzed, including occupation and employment, had any influence on the success of obtaining consent to autopsy. In this study, blacks were associated with a marginally significant increase in failure to obtain consent to neonatal autopsy.

The Consent to Autopsy

There is extreme variability in the logistical issues associated with the consent to autopsy, which are dependent on the following factors:

Nature of death, including sudden vs. following a chronic disorder, expected vs. unexpected,
Place where child dies, home vs. hospital
Laws at the place of death.

The consent to autopsy generally starts after the child's death. However, it is not uncommon for an autopsy to be discussed before death along with other end-of-life issues in chronically ill children or when death is expected. In fact, physicians or parents may raise this issue long before the child's death. Although the issue of autopsy may be discussed beforehand, the formal consent to autopsy is invariably signed after death, except in states or regions that permit signing the consent before death. Because there are regulations regarding the body's disposal, the consent to autopsy in fact allows for the release of the body for the procedure.

The consent to autopsy usually takes place in face-to-face meetings between families and healthcare providers when children die in the hospital or at home. However, the consent to autopsy may occasionally need to be obtained via telephone conversations, particularly for children who die at home. In a 2009 report, researchers prospectively contacted by telephone the parents of children who died unexpectedly in order to obtain consent for research imaging studies during autopsy. Parents were approached by a senior family liaison experienced in dealing with bereaved families. Thirty-one of 32 families contacted by telephone consented for the procedure. It is common now for families to pursue specialized care for their children far from home. In this setting, face-to-face meetings with the primary care team may not be feasible. Consent to autopsy may need to be obtained over the telephone in such circumstances. However, it is important to emphasize that regulations within the jurisdiction where the child died will dictate if telephone consent is permissible; and requirements for autopsy consent obtained over the telephone may vary. In my institution, we recommend that a witness listen to the consent on an interconnected line or confirm permission for the procedure by communicating directly with the person who provided the consent. The person obtaining the consent should go over all the information contained in the autopsy consent form and fill out the information about the person providing the consent including name, address, relationship to the deceased child, and telephone number called. In my experience, the consent to autopsy obtained over the telephone worked well when death was expected and a good support system, such as hospice, was already in place. In particular, a local healthcare team member such as the hospice nurse may provide essential guidance so that consent is done at the appropriate time and in the least intrusive way to grieving families.

Most commonly the consent process and the topic of autopsy is led by a physician whose practice is hospital-based. However, the consent to autopsy can certainly be raised by other healthcare providers who are knowledgeable about autopsy process and can adequately address the questions and concerns raised by families.

The individual who is legally allowed to give autopsy consent is generally the person assuming custody of the child's body for burial. Next of kin and the person authorized to consent to autopsy are dictated by the law in the jurisdiction where the child died. In the absence of any of those options, the consent to autopsy may need to be obtained from a representative of governmental agencies charged by law with the responsibility for burial. However, I have witnessed situations where the determination of the person who should be able to provide consent to autopsy was not straightforward. For example, a deceased child had been under state custody. The state's representative relinquished the consent decision to the child's biological parent. I have also raised the issue of autopsy with parents who were separated, divorced, or never married. In these cases, unless both parents had already reached an agreement, the decision to consent to autopsy should rely on the child's primary caregiver. Irrespective of the legal status of their relationship, I have not pursued consent to autopsy for my patients when there was a disagreement among parents about the procedure. Guidelines for introducing the topic of autopsy are shown in Box 25-1 .

BOX 25-1

Guidelines on How to Introduce the Topic of Autopsy to Parents or Guardians of Children

1.
Anticipate that the opportunities to discuss autopsy with parents and/or legal guardians can take place at different times during the child's illness, but most commonly at the end of life.
2.
Anticipate that parents and/or legal guardians are most responsive to this discussion when they have a good understanding of the child's illness and the inevitability of the child's death, and when they trust the healthcare provider.
3.
A particularly productive way to introduce the issue of autopsy is to first have a global discussion about the challenges faced by parents, families, and clinicians in relation to the child's specific medical problem. Suggested discussion points include:
- 1.
  Describe how common or rare the illness or specific medical problem is
- 2.
  Discuss why more effective therapies are not available and the shortcoming of current therapies
- 3.
  Depict aspects of the problem and/or illness to which parents can envision a more humane relationship, such as other affected children, families, or social groups
4.
Offer a description of the goals of autopsy, including tissue collection for research purposes, and clarification or elucidation of cause of death, and link these to this child's clinical circumstances.
5.
Discuss with parents all aspects of autopsy, including details about the procedure, potential to interfere with grieving process or planned rituals, retention of tissues if applicable, costs, and particularly potential limitations and shortcomings, including the possibility that no cause of death may be found, tissue and fluids collected may not be suitable for analysis.

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