Perspectives From Europe and the United States on Perinatal Palliative Care and Current Ethical Dilemmas

Friday, 28 July 2017: 1:50 PM

Charlotte Wool, PhD
The Stabler Department of Nursing, York College of Pennsylvania, York, PA, USA
Joana Catarina da Cruz Mendes, PhD
Pediatrics, Hospital Sao Francisco Xavier, Lisbon, Portugal, 1495-005 Lisboa, Portugal
Jesse Wool, BSN
Pediatric Intensive Care Unit, Children's Hospital of Philadelphia, Philadelphia, PA, USA

The purpose of this presentation is to review current international scientific findings and perspectives about perinatal palliative care (PPC) from Europe and the United States. Further, two recent clinical challenges in the area of PPC, neonatal organ donation (NOD) and post-mortem cooling, will be examined through a principle-based ethical lens.

Perinatal palliative care refers to comprehensive, holistic and interdisciplinary services for parents who receive a diagnosis of a life-limiting fetal condition and choose to continue the pregnancy (Limbo & Wool, 2016). Provision of services begins at diagnosis, extends through birth and the postpartum period and includes care for the neonate who is expected to have a shortened life span (Wool, 2013). Nurses are instrumental in providing PPC for parents and often provide leadership through coordinating services, collaborating with providers and creating plans of care for the pregnancy and birth, and plans of care for the infant following the birth. Treatment plans for the infant may include curative interventions, palliative support, or a combination of both depending on the infant’s condition at birth. An international body of literature has grown from the evidence in pediatric and neonatal palliative care and guidelines from the adult palliative care sector. Several standards of care have emerged in the European sector, and in the United States (US) a survey of PPC programs was recently published (Wool, Côté-Arsenault, Black, Denney-Koelsch, Kim & Kavanaugh, 2016). Recommendations have emerged as international organizations formally recognize the need for PPC services (ACOG, 2016).

The growing acceptance of PPC in the mainstream has resulted in parents requesting interventions that may be unfamiliar to, or uncomfortable for, clinicians (Mendes, Wool & Wool, 2016). Neonatal organ donation is the practice of retrieving organs and tissues from infants who die during birth or shortly thereafter. The Internet has increased parental awareness of NOD as an option despite the fact that in the United States and Europe organ procurement organizations are not currently promoting such options or logistically prepared to engage in such activities. An additional ethical challenge includes the physiologic component of the maternal-fetal dyad in which the fetus is stable, followed by a low probability of survival post birth. When a parent learns of a life-limiting fetal condition (LLFC) it is not unreasonable they look for meaning through such a tragedy. This altruistic approach may help families cope with loss and give them a sense that “good” may result from their heart-wrenching situation (Sarnaik, 2015). Benefits of NOD center on beneficence toward others [the recipient population] and the real possibility of securing an increased number of tissues or organs for pediatric patients.

Several potential and real challenges of NOD exist. As parents make decisions for their fetus or infant, it is important to recognize that this population is considered vulnerable because of their lack of autonomy. The donating infant may be exposed to life-supporting interventions for the sole purpose of extending life long enough to procure organs. These measures introduce avoidable harm to the infant, thus raising concerns about their ethical appropriateness.

An important aspect of PPC is the opportunity for parents and family members to meet, hold and create memories with their infant. Nurse experts encourage parental participation at the end of life through final acts of caregiving such as bathing, dressing or including spiritual and cultural rituals (Limbo & Lathrop, 2014). Usurping bereavement interventions for the sake of attending to time-sensitive procurement procedures is unstudied in the PPC population. Should the donation be “unsuccessful,” parents’ loss of time with their infant could be especially distressing. Corr and associates (2011) have highlighted similar experiences with families, describing them as secondary losses which feel like a “second death” to family members.

Nurses have played a lead role in perinatal bereavement care for decades. Nurses educated in bereavement practices have implemented best-practice standards for the perinatal population. New medical equipment is currently available and in use in some US hospitals. The equipment includes a cooling pad, insulated hose and small cooling unit which can be used after an infant dies for the entirety of the hospital stay so use of a mortuary is not needed. Use of the equipment provides extended opportunities for parents and family members to spend time with their infant in order to create memories or conduct special rituals. Parents, often suffering from profound grief or shock, or recovering from a difficult labor and birth, have increased autonomy to assimilate to their circumstances and prepare to say goodbye to their infant. Nursing staff has additional time to collect mementos for the family.

One aspect of palliative care is that it neither hastens of prolongs death and it is respectful of the time of death (WHO, 2014). Use of cooling equipment interferes with natural postmortem physical changes. Clinicians, responsible for assessment and well-being of their patients at the end of life, may be unsure about how, or if, to asses an infant who has died. Family members and clinicians may be uncomfortable with the psychological implications of using such equipment. Should such equipment become the norm in health care systems, nurses will need appropriate education to supplement their expertise in bereavement services. Research regarding parental outcomes related to equipment usage is necessary to guide practice initiatives.

An understanding of the current literature in PPC enables clinicians to provide optimal, compassionate care to families who experience a life-altering event. The Nursing Code of Ethics (2015) lays a foundation for nursing care, especially when firm evidence is unavailable or unexplored. Provision Two in the Code of Ethics explicitly states that the nurse’s primary commitment is to the patient. When patients request interventions for which outcomes are unstudied, clinical experts, nurse leaders and nurse scientists have an opportunity to carefully collaborate, study and evaluate practices that have not yet entered the mainstream. This presentation evaluates the international state of the science on perinatal palliative care. The exchange of ideas that considers ethical challenges during the integration of technology into nursing practice raises awareness and spurs future research.