Consent to autopsy for neonates.

OBJECTIVES: To determine parents' views on autopsy after treatment withdrawal. DESIGN: Face to face interviews with 59 sets of bereaved parents (108 individual parents) for whose 62 babies there had been discussion of treatment withdrawal. RESULTS: All except one couple were asked for permission for postmortem examination; 38% refused. The main reasons for declining were concerns about disfigurement, a wish to have the child left in peace, and a feeling that an autopsy was unnecessary because the parents had no unanswered questions. The diagnosis, the age of the child, and the approach of the consultant appeared to influence consent rates. Of those who agreed to autopsies, 92% were given the results by the neonatologist concerned. Whether or not they had agreed to the procedure, at 13 months no parent expressed regrets about their decision. CONCLUSIONS: Autopsy rates in the East of Scotland stand at 62%. Parents' perceptions are an important element in consent to postmortem examination.

Lingering death after treatment withdrawal in the neonatal intensive care unit.

OBJECTIVE: To explore parents' perceptions of treatment withdrawal and the dying process. DESIGN: Face to face interviews with 59 sets of parents of 62 babies in the East of Scotland three months and 13 months after death. RESULTS: 22% of the parents expressed reservations about the length of the dying process, which they reported in these instances had taken from three to 36 hours. Deaths that medical teams had predicted would be quick had, according to the parents' recollections, taken from 1.5 to 31 hours. When a baby died swiftly, this seemed to confirm the wisdom of the decision to stop. When babies lingered, doubts were raised. CONCLUSIONS: Parents need to be adequately prepared for what may happen after treatment withdrawal. The debate should be reopened about the best way to manage protracted deaths in line with parental need.

Deciding on treatment limitation for neonates: the parents' perspective.

UNLABELLED: The reported study aimed to explore parents' perceptions of treatment withdrawal/withholding; their experience and their opinions. In-depth face-to-face interviews at 3 and 13 months after the baby's death were conducted with 108 parents of 62 babies from the East of Scotland. Of the parents, 56% (60/180) believed they had decided to stop treatment. A further 4/59 sets of parents subsequently wished they had taken responsibility. Only one parent who did decide felt guilt 3 months after the event. Parents identified two essential factors which minimise doubt: full and honest information and concrete evidence of a poor prognosis. CONCLUSION: The majority of parents wish to be active in decision making on behalf of their baby. Doing so does not appear to have adverse consequences. The pacing of events in the process of deciding and managing the dying is critical. Dissatisfaction is reduced if parents are given time and evidence to help them assimilate the reality at each stage.

Deciding for imperilled newborns: medical authority or parental autonomy?

The ethical issues around decision making on behalf of infants have been illuminated by two empirical research studies carried out in Scotland. In-depth interviews with 176 medical and nursing staff and with 108 parents of babies for whom there was discussion of treatment withholding/withdrawal, generated a wealth of data on both the decision making process and the management of cases. Both staff and parents believe that parents should be involved in treatment limitation decisions on behalf of their babies. However, whilst many doctors and nurses consider the ultimate responsibility too great for families to carry, the majority of parents wish to be the final arbiters. We offer explanations for the differences in perception found in the two groups. The results of these empirical studies provide both aids to ethical reflection and guidance for clinicians dealing with these vulnerable families. They demonstrate the value of empirical data in the philosophical debate.

Follow up care of bereaved parents after treatment withdrawal from newborns.

OBJECTIVE: To explore parents' experiences of bereavement care after withdrawal of newborn intensive care. DESIGN: Face to face interviews with 108 parents of 62 babies born over two calendar years in the East of Scotland. RESULTS: Only 22% were seen by six weeks after the death, 10% were not recalled before 6-11 months, and 8% were not seen at all in the first year. All except one couple saw the neonatologist who had cared for their baby. Only 33% remembered a neonatal nurse being present. Most (88%) were seen in the study hospital. Parents highlighted a number of specific needs. Appointments should be: (a) scheduled soon after the death of the baby and certainly within two months of the death irrespective of whether or not autopsy results are available; (b) with the named neonatologist; (c) in a setting away from the hospital if possible. Parents value: (a) efforts to find out how they are coping; (b) full frank information given sensitively to enable them to build up a cohesive picture of what happened and assess their future risks; (c) reassurance where possible, but half truths, false reassurances, and broken promises are unacceptable. CONCLUSIONS: Follow up care is a crucial part of the management of families from whose babies treatment has been withdrawn. Resources devoted to it should be re-examined to provide a service more in tune with parental need. In choosing the place, timing, and conduct of the meeting, staff should be sensitive to the expressed wishes of the parents themselves.

Withholding/withdrawing treatment from neonates: legislation and official guidelines across Europe.

Representatives from eight European countries compared the legal, ethical and professional settings within which decision making for neonates takes place. When it comes to limiting treatment there is general agreement across all countries that overly aggressive treatment is to be discouraged. Nevertheless, strong emphasis has been placed on the need for compassionate care even where cure is not possible. Where a child will die irrespective of medical intervention, there is widespread acceptance of the practice of limiting aggressive treatment or alleviating suffering even if death may be hastened as a result. Where the infant could be saved but the future outlook is bleak there is more debate, but only two countries have tested the courts with such cases. When it comes to the active intentional ending of life, the legal position is standard across Europe; it is prohibited. However, recognising those intractable situations where death may be lingering and unpleasant, Dutch paediatricians have reported that they do sometimes assist babies to die with parental consent. Two cases have been tried through the courts and recent official recommendations have set out standards by which such actions may be assessed.

Prolonging life and allowing death: infants.

Dilemmas about resuscitation and life-prolonging treatment for severely compromised infants have become increasingly complex as skills in neonatal care have developed. Quality of life and resource issues necessarily influence management. Our Institute of Medical Ethics working party, on whose behalf this paper is written, recognises that the ultimate responsibility for the final decision rests with the doctor in clinical charge of the infant. However, we advocate a team approach to decision-making, emphasising the important role of parents and nurses in the process. Assessing the relative burdens and benefits can be troubling, but doctors and parents need to retain a measure of discretion; legislation which would determine action in all cases is inappropriate. Caution should be exercised in involving committees in decision-making and, where they exist, their remit should remain to advise rather than to decide. Support for families who bear the consequences of their decisions is often inadequate, and facilitating access to such services is part of the wider responsibilities of the intensive care team. The authors believe that allowing death by withholding or withdrawing treatment is legitimate, where those closely involved in the care of the infant together deem the burdens to be unacceptable without compensating benefits for the infant. As part of the process accurate and careful recording is essential.

HIV and AIDS: the nursing response and some ethical challenges.

AIDS has challenged many concepts and practices within nursing. Because of the serious implications attending a positive diagnosis, and because patients with AIDS have become articulate and well informed, familiar principles have been exposed to renewed scrutiny. Anomalies and dilemmas have been revealed. Results from a recent Institute of Medical Ethics survey carried out by the author have illustrated some of the theoretical concepts. Confidentiality has assumed new dimensions. Partnership and mutual empowerment are seen as keys to sound practice involving the patient in decision-making. A vital ingredient relates to the preparation of professionals; they need to be aware of those attitudes and prejudices within themselves which potentially stand in the way of caring well.

HIV and AIDS: a survey of nurse education in the United Kingdom.

A survey conducted throughout the United Kingdom examined the current provision being made to train nurses to care safely and sensitively for patients with HIV and AIDS. Problems relating to intolerance and prejudice are still commonly encountered. The study recommends that HIV and AIDS should be set into a wider context of sexuality, death and infection control rather than singled out for special attention. Nurses, both students and qualified staff, need to gain insight into their own values and prejudices if these are not to inhibit the giving of good quality care. Teaching in this subject area requires special skills and there is concern that nursing is not equipped to deal with it. The involvement of clinical specialists in educating nurses is perceived to have a strongly positive effect, helping to bridge a credibility gap and compensating for the lack of clinical experience amongst the teachers. Providing opportunities for nurses to meet with people whose lives have been profoundly affected by the virus is also a powerful form of learning. There is, however, a great need for support in this stressful area of practice.

Hands-on experience: do teachers need it?

Discussion on the efficacy of the clinical involvement and credibility of nurse educators has been ongoing for a considerable time. The author sheds new light on the subject by referring to a survey of nurse education on HIV/AIDS in the UK. She concludes that while a measure of clinical experience is desirable in teaching, it is not always possible to have all the necessary qualities wrapped up in one person, and calls for carefully integrated team effort to take nurse education forward.

Coping: an essential element of nursing.

How well a person copes is central in determining his or her well-being, no matter how ill he or she is. Without an accurate appreciation of what coping is and how it may be facilitated, attempts to help patients may be both ineffective and harmful. But the subject is multifaceted and poses many problems for clinicians and researchers alike. This paper attempts to synthesize available knowledge on coping from various disciplines and apply it to life as nurses know it.

Social support in the neonatal intensive care unit.

That having a baby in hospital undergoing intensive care is a stressful experience is beyond dispute. Every parent, no matter how well-developed their own personal resources, depends to some extent on the support of others within their social system to cope with this stress. Grandparents occupy a special place in support networks and their role was studied in families with a very low birthweight baby. Both professional and lay perspectives were investigated and 93 families participated. Questionnaires were sent to family members 1 month after the baby's birth and 1 month after discharge home. There was a general consensus that the principal role of grandparents was to provide emotional support. Many practical forms of help were seen to be expressions of their care and concern. There were, however, discrepancies between professional and parental expectations where both protection from problems and obtaining information on behalf of the parents were concerned. More was expected of grandmothers than of grandfathers and maternal grandmothers in particular were key figures. There were a number of areas of potential conflict of needs and rights and a recommendation has been made to give parents a greater voice on who they choose to support them.

The assessment of coping.

Major methodological problems attend any attempt to measure coping. Some of these difficulties relate to the time frame, the units of evaluation, and who should judge the effectiveness of coping behaviors. Account must be taken of factors as diverse as the social context of the individual and the balance of costs and benefits to a person as a result of adopting a given strategy. Although many instruments exist to measure aspects of coping, there is a need to lay a sure foundation in subjective assessments by patients and never to lose sight of the individuality of each person and situation. The article reports on research conducted in the Nursing Research Unit at the University of Edinburgh in which an attempt has been made to examine both measurement issues and the components that explain coping.

Neonatal intensive care units: visiting policies for grandparents.

Most neonatal intensive care units (NICUs) in the UK now permit grandparents and siblings to enter but there has been no systematic evaluation of current policies for visiting. Postal questionnaires were used to obtain data from all qualified nurses/midwives (N = 265) and doctors (N = 63) employed in the seven largest NICUs in Scotland. Subsequently, parents and grandparents of very low birth weight (VLBW) babies were sent questionnaires one month after delivery and one month after the babies' discharge home. 93 families participated. Areas under investigation were sources of support and their perceptions of current visiting policies. Overall professionals found working with grandparents the least liked aspect of their job and there was widespread dissatisfaction with existing policies for grandparents' involvement which were not seen to meet perceived needs. Although most grandparents were tolerant of the restrictions limiting their access, parents were far less satisfied on their behalf. Families and staff alike called for a revision of policies and a much greater voice in decision making for the parents and relatives themselves.

The socialisation of nurses in clinical settings: a dual focus critique of a research study.

This is a two-pronged critique of a study of the socialisation of neophyte nurses in a neonatal intensive care unit in the USA. The authors, respectively an educationalist and a nurse researcher experienced in neonatal intensive care, agreed in finding that the study fell short of what it promised, but differed as to their reasons. They decided to publish their critiques as a complementary pair, in the hope that those supervising research students would benefit from seeing a disappointing study simultaneously in two perspectives, educational and clinical.

Mothers of very low birthweight babies: how do they adjust?

A prospective study was conducted to investigate the perceptions of 21 mothers of singleton babies weighing 1500 g or less. Six in-depth interviews were held with each respondent from 1 week after delivery to 3 months after the baby's discharge from hospital. Diaries and Neonatal Perception Inventories supplied additional data. Six phases were identified each characterized by certain critical factors related to the mother's emotional state, her perceptions of the baby, and family responses. Significant statistical differences were found between those mothers who did not feel ready to take the infant home and the rest of the sample. Those who were not ready demonstrated a marked difficulty in establishing and maintaining relationships and held very inappropriate perceptions of the baby. These findings have important implications for the discharge of very low birthweight babies after a prolonged stay in hospital.