Do parents or surrogates have the right to demand treatment deemed futile? An analysis of the case of Baby L

Do parents or surrogates have the right to demand treatment deemed futile? An analysis of the case of Baby L The purpose of this discussion paper is to address and analyse the ethical issues arising from the following questions: Do parents or surrogates of newborn infants have the right to demand treatment deemed ‘futile’? Should the religious beliefs of the infant's parents be given special consideration when deciding on the correct course of action? The case of Baby L, an infant born with severe disability will be used to aid the analysis. It is argued that health care providers have no obligation to provide ‘futile’ treatment based on the surrogates’ right to autonomy, but an obligation may arise from a duty of benevolence. However, acting from a duty of benevolence can ignore considerations of justice and fairness and does not always prompt the right course of action. Any decision regarding treatment options will involve ranking the beliefs and values of the parents or surrogate against the integrity of the health care team and the interest of society as a whole. The consequences of continuing or discontinuing life‐sustaining treatment for the infant, the parents and the health care team will also be considered and examined.     

Centrality of spirituality/religion in the culture of palliative care service in Indonesia: An ethnographic study

Experiencing life‐threatening illness could impact on an individual’s spirituality or religious beliefs. In this paper, we report on a study which explored cultural elements that influence the provision of palliative care for people with cancer. A contemporary ethnographic approach was adopted. Observations and interviews were undertaken over 3 months with 48 participants, including palliative care staff, patients, and their families. An ethnographic data analysis framework was adopted to assist in the analysis of data at item, pattern, and structural levels. Religion was identified as central to everyday life, with all participants reporting being affiliated to particular religions and performing their religious practices in their daily lives. Patients’ relatives acknowledged and addressed patients’ needs for these practices. Staff provided spiritual care for the patients and their relatives in the form of religious discussion and conducting prayers together. An understanding that religious and spiritual practices are integral cultural elements and of fundamental importance to the holistic health of their patients is necessary if health‐care professionals are to support patients and their families in end‐of‐life care.     

Paediatric palliative care: a lack of research-based evidence

Providing the best possible care for the child and family is paramount to health professionals working in paediatric palliative care. However, there is little research which enables practitioners to question their current practice. There are concerns about conducting research on children receiving palliative care at such a sensitive time for the child and his/her family. These concerns must be considered against the growing demand for clear standards and guidelines for practice within health care. According to the Department of Health (DoH) there is no place within the modern healthcare system for the adoption of unproven theories or outdated care (DoH, 1998). While no-one would question the dedication and care being delivered to children and their families by well-trained staff, the lack of research is a cause for concern. A group of students undertaking a degree module in paediatric palliative care identified the lack of literature and research in this area and have undertaken a review of the available literature.     

The role of neonatal nursing in palliative care of the newborn

Nursing dying newborns is an inherent part of working in a neonatal intensive care (NICU). Holistic care involves recognizing the physical, emotional and spiritual needs of the dying infant and the family. The present article aims to explore how nurses can provide the best practices in neonatal palliative care. Palliative care is composed of three components: assistance with end-of-life decision making; pain and comfort management, and bereavement support with cultural competence. These issues have implications for improving nursing practice.     

Rush SpecialKare Keepsakes

When an infant is admitted to a neonatal intensive care unit (NICU), parents seldom have the opportunity to celebrate special events in the infant's life within the context of the family. Our Rush SpecialKare Keepsakes is a program for parents of NICU infants that combines therapeutic photography, journaling, and memento preservation, with the goal of documenting the infant's birth and place within the family. The program has two distinct components: weekly scrapbooking sessions, which are free of charge to all NICU families; and Holiday Family Photo Shoots, in which infants are photographed with their family members to celebrate traditional holidays throughout the year. The program, which was conceived and implemented in January 2001, is under the direction of two NICU bedside nurses, who blend scrapbooking techniques with clinical expertise, so that weekly scrapbooking sessions are transformed into a unique type of parent support group. Data from the first 6 months of the program indicate that all 173 parent participants overwhelmingly appreciated the opportunity to attend these sessions, which they perceived as a brief respite from the NICU and an opportunity to interact with other families.     

The role of fathers in supporting the development of their NICU infant

Contemporary models of NICU care emphasize the critical role of parents in supporting their infant's development. Fathers play an important, but underutilized, role throughout their infant's NICU journey. This narrative review describes the main direct and indirect mechanisms through which fathers support the development of their NICU infant, and the barriers and facilitators to this support as described in current research. Studies have identified several mechanisms through which fathers can directly enhance their infant's health and development. Several studies described the benefits of fathers providing kangaroo care, but infant-directed speech, tactile stimulation, and parent scent also appear to yield developmental benefits. However, most of the literature focused on the indirect ways that fathers support their infants through the coparenting alliance, assuming additional responsibilities that allow mothers to spend more time engaged in infant care, and by providing financial support for the family. Reduced access to the NICU setting has been identified as a key barrier to fathers' direct involvement in infant care, which has been further exacerbated due to additional restrictions imposed due to the COVID-19 pandemic. Additionally, negative perceptions held by fathers, mothers, and nursing staff regarding the role of fathers in preterm infant care may also represent a barrier to fathers' engagement. Nursing staff were identified as playing a crucial role in promoting fathers' capacity to support the development of their infants. This research can help to inform interventions and policies geared toward optimizing infant development by improving the involvement of fathers during a NICU admission, and beyond.     

George's Lullaby: A case study of the use of Music Therapy to support parents and their infant on a palliative pathway

BackgroundHaving an infant diagnosed with a life-limiting condition is a stressful time for parents and has been shown to have an impact on parental mental health. Music Therapy, when provided by an HCPC registered Music Therapist with enhanced Neonatal training, can empower parents to share culturally based, personal music with their infant to assist with developmental care and create precious memories. These positive experiences are vital to hold in order to continue bonds after death and assist in processing grief.Primary diagnosisThis case study presents a full term infant with surfactant deficiency (R192).InterventionWeekly Music Therapy was provided on the Neonatal Intensive Care Unit (NICU) with parents and infant following the Rhythm Breath Lullaby: First Sounds approach. It was then used again at the end of the infant's life at the family home.OutcomesMusic Therapy provided a focus for the family while on the unit and supported family integrated developmental care of the infant. The relationship developed, a long with the music shared, then supported the family emotionally and physically as parent's held their baby at end of life.Practice recommendationsTo our knowledge this is the first time Music Therapy has been provided on the NICU through to end of life at home with the same Music Therapist. Music Therapy on Neonatal Unit is uncommon in the UK but has potential to support infant comfort whilst supporting the sharing of parent identities. Music Therapy has the potential to provide a focus that enables parents, who have a heightened awareness of the proximity of loss, to interpret, play and comfort their infant.     

Spiritual aspects of end-of-life care for Muslim patients: experiences from Iran

The aim of this article is to describe the spiritual aspects of palliative care of Muslim patients based on experiences of end-of-life care in Iran. The religions of the world play a major part in the life cycle of their adherents, and most have rituals and beliefs concerning the care of dying people. For Muslims, death is believed to be not only the cessation of a complex set of biochemical processes, but also a belief that the spirit continues to live and dying is a passage from this world to the resurrection. The spirit is believed to be eternal and does not perish with death. According to Muslims' beliefs, reading of the Quran (the main religious text) can produce peace of mind in those who are near death. Nursing research has shown that the spiritual dimension of care infiltrates all aspects of nursing care. Palliative care nurses need to be informed about religious aspects of people around the world as a part of palliative care. This article indicates the methods of attending to spiritual care for Muslim patients based upon our experiences in Iran.     

Indigenous ethnic minorities and palliative care: exploring the views of Irish Travellers and palliative care staff

Indigenous people are among the ethnic minorities who encounter palliative care services. This research shows that Irish Travellers have little experience of specialist palliative care and that specialist palliative care providers have little knowledge or experience of Irish Travellers. Characteristics of Irish Travellers culture including the importance of hope, avoidance of open acknowledgment of death, the importance of family and the avoidance of the place of death (including moving away or burning caravans where death has occurred) challenge the provision of specialist palliative care. Individualisation of patient care, a feature of specialist palliative care can help staff provide appropriate care.     

Communication and decision making for patients with end stage diseases in an acute care setting

Twenty retrospective patient case studies were collated in an acute care teaching hospital using a case note audit and in addition interviews were undertaken with 40 nursing staff following the deaths of these patients in order to: analyse the end of life care received; identify any deficits in care provision and to enable the nursing division to target any inadequacies in care found. Findings indicated that communication between medical and nursing staff and between nursing staff, patients and family around end of life issues continue to be poor and that discussions regarding NFR decisions occurred too close to death, creating unnecessary stress for both patients and families. Recommendations regarding palliative approaches in the acute care setting are detailed.     

A survey of how mothers think about and use voice with their hospitalized newborn infant

Short-term family-centered early intervention enhances a mother's capacity for attuned interaction with her hospitalized newborn infant which in turn impacts positively on infant neurodevelopment. This study determined the acceptability of a focus on mothers' own voices to support their hospitalized infant.Sixty mothers of newborn surgical inpatient infants were surveyed about spontaneous vocal behavior in the NICU. Questions included age, education and first experience of parenting, contextualization of voice use relative to other nurturing behaviors, and mother's capacity to imagine or think of a reason for singing to her infant.Sixty percent of mothers sang spontaneously in the NICU. There was strong evidence for an association (p < 0.001) between imagining singing or thinking of a reason for singing, and actually singing. There was no evidence for an association between mothers' spontaneous voice use and their age, education or experience of parenting, and musical heritage. Barriers to singing included being too embarrassed or feeling too obvious in the NICU environment.The snapshot of mothers' beliefs, thoughts and action in using their voices is valuable in creating an efficient family empowerment model.     

Family-centered care in the NICU

Family-centered care is a philosophy of care that embraces a partnership between staff and families. Families, patients, and staff benefit in a family-centered care environment and the design of the newborn intensive care unit (NICU) must not interfere with its successful implementation. Unrestricted parental presence in the NICU, parental involvement in infant caregiving, and open communication with parents are basic tenets of family-centered care. By virtue of their continual presence and role in the NICU, nurses are in a unique position to support family-centered care.     

Parent views of infant pain and pain management in the neonatal intensive care unit

It is well established that infant pain is an important concern of parents, but little is known about the knowledge and expectations of parents regarding their infant's pain or about parents' involvement in their infant's care and satisfaction with pain management by neonatal intensive care unit (NICU) staff. Parents have an important role to play in helping health care professionals understand their child's pain and in providing comfort to their child. Neonatal nursing has been at the forefront of family-centered care, but family involvement in pain care has lagged behind other aspects. New guidelines and standards emphasize the importance of the family's role in pain management. This article examines the rationale for supporting parent involvement in infant pain care and discusses the importance of understanding parent views on infant pain in light of the new standards for pain management set forth by the Joint Commission on Accreditation of Healthcare Organizations. Findings from a survey to determine parent understanding of and involvement in infant pain care in one NICU are presented. A continuous-quality-improvement approach for enabling the involvement of parents in their infant's pain care is proposed, and specific strategies are suggested. Copyright © 2001 by W.B. Saunders Company     

Posthumous reproduction and palliative care

Posthumous reproduction is an issue fraught with legal, ethical, religious, and moral debate. The involvement of the hospice and palliative care community in this debate may be peripheral due to the fact that other health care professionals would be actually delivering the services. However, the hospice and palliative care community are more likely to treat patients considering posthumous reproduction as they near the end of their lives. This article provides the hospice and palliative care community with a review of the medical, ethical, and legal considerations associated with posthumous reproduction. Having knowledge of these issues, and a list of available resources, will be useful if hospice and palliative care staff find themselves facing a patient or family that is considering posthumous reproduction.     

Parents' refusal of medical treatment based on religious and/or cultural beliefs: the law, ethical principles, and clinical implications

When parents apply religious or cultural beliefs concerning spiritual healing, faith healing, or preference for prayer over traditional health care for children, concerns develop. Medical care is considered one of the most basic of all human needs, and yet parents may elect to apply religious or cultural beliefs in place of traditional Western medical care for their children. Because memberships in religious groups that have beliefs concerning prayer and health care for children are increasing, the topic is of great importance for pediatric health professionals. This article describes parental refusal of medical care, and it discusses the legal, ethical, and clinical implications.     

Exploring the experience of dignified palliative care in patients with advanced cancer and families: A feasibility study in Singapore

Abstract

Dignity is an important concept in palliative care. Yet, the concept is ambiguous and there does not seem to be agreement on how care can be delivered that preserves dignity at the end of life. The aim of the study was to conduct a feasibility study to explore the experience of dignity in palliative care in Singapore. We conducted qualitative interviews with four patients with advanced cancer and their primary family caregiver from a local largest home hospice service. The preliminary findings showed that the experience of dignity in Singapore context consists of three factors, which reflected 12 themes. These are (1) social factor, which comprised of family, friends, relatives, and employers; (2) organizational factor, which comprised of the healthcare system, voluntary welfare organization, and private sector, and (3) spiritual factor, which was associated with existential values, cultural and religious belief systems of the patients, and their families. The preliminary findings suggest similarity to the Western findings: dignity can be preserved by holistic care that focuses on psychosocial, physical, and spiritual aspects. In addition, dignified patient care should encompass the knowledge and sensitivity to the multi-cultural and multi-ethnic practices and health beliefs of the patients and their families. In conclusion, the preliminary findings suggest that using systems perspective, it is feasible to conduct a study to develop an empirical model on dignified palliative care in the Singapore context.     

Discharge of the premature infant.

Appropriate interventions are initiated smoothly if the neonatal staff is familiarized with the new concepts of infant care and their empirical basis. It is also important that the nurses be present at all conferences to facilitate more meaningful interaction with the mother and her infant. If this is done, then it is easier to evaluate the needs of the mother and how much teaching support is necessary. The more involved the nurse becomes with the family, the more rewarding her experience will be, and she will be eager to get involved with the next family.     

A case study of infant massage outcomes

This article describes a case study of infant massage for a neonate in a neonatal intensive care unit (NICU). Infant massage is grounded in the theory of touch. In an NICU, the infant's tactile experiences can be uncomfortable or painful. This can lead to touch aversion. It is possible that providing pleasurable touch experiences through infant massage can help to develop touch acceptance. It is important to first assess the infant's readiness for massage according to his or her need and response. Infant massage as a complementary therapy in the NICU is demonstrated here in a photo-study of "Nicholas." The initial uncertainty and gradual acceptance by Nicholas of the massage experience is clearly depicted. At the end of the massage, Nicholas was relaxed and asleep in a semi-fetal position. The behavioral change in this infant indicates that he made a transition from touch aversion to touch acceptance.     

Case study of an educational intervention to favor siblings’ adaptation during the hospitalization of a preterm infant in the neonatal intensive care unit

Hospitalization of a preterm infant in the Neonatal Intensive Care Unit (NICU) places additional strain on the family and influences the siblings' adaptation. Although it is essential to support the siblings’ adaptation and provide family-centered care in the NICU, sibling involvement is rarely integrated into nursing care. An evidence-based intervention was therefore developed in a level-III NICU and its impact on sibling adaptation was evaluated using a Case study in which three families with a hospitalized infant and siblings between 3 and 12 years old participated. The parents were asked to consult a website and attend a 30-min educational session on issues related to sibling adaptation, and the siblings received a structured introduction to the NICU and visited the preterm infant. All three families were satisfied with the activities, although two parents felt neutral about whether the intervention met their expectations. Overall, the intervention seems to have the potential to facilitate sibling adaptation during the experience of a NICU hospitalization.