Children with complex care needs going home: The relevance of ethical ideas of proximity

Kevin was born at 24 weeks gestation, and was still dependent on a ventilator four months after delivery. He had no major neurological deficits. After several discussions with the parents, a tracheostomy was performed and a discharge plan created to send Kevin home on a ventilator. At eight months of age, Kevin was discharged from the hospital's paediatric unit to his home in a rural community. What are the ethical issues that arise in such a situation and how may they be described? Kevin is one of many children with complex care needs (CCNs) who, because of advances in medical technology, can now survive and are considered for care at home. Early death or institutional upbringing are no longer definite prospects for these children. Parents have pushed for services to care for children at home. Generally, paediatricians have strongly supported care at home as being in the child's best interests. However, the transfer of children with CCNs from hospital to home greatly alters the distribution of responsibilities for the care and well-being of the child between and among the family, health care team and government. In analyzing the ethical implications of situations such as Kevin's, paediatricians usually rely on the ‘principlism’ framework. This is based on the ethical principles of autonomy, beneficence, nonmaleficence and justice, as well described by Beauchamp and Childress (1) among others. Harrison (2) has described the need to expand “our ethics armamentarium beyond the basic principles” and that other ethical concepts are relevant to paediatric practice. Autonomy is a well-developed concept, but there may be confusion when this is applied to paediatric situations. Is it the child's autonomy as they themselves express it, and if so, at what age and stage do we accept it (3)? Or, is it the child's autonomy as expressed by the parent as decision-maker for the child? Or, is it the autonomy as the family unit as a whole? Our expanded knowledge will enrich our overall understanding of ethics, and autonomy specifically, to complement principlism rather than supplant it. We recently completed a pilot study (4) that examined the experience of transferring a ventilator-dependent child like Kevin from an urban hospital to a rural home for care. The concept of proximity, whether in space or time, was clear in the narratives of participants, both mother and nurse, who were directly involved in the transition of the child to home. The ‘ethics of proximity’, developed by Nortvedt, recognizes and explains many of the issues brought forward by the pilot participants (5,6). The present paper will focus on the ethics of proximity and why this ethics is relevant to analyzing the arrangements for Kevin to go home and receive long-term care. Nortvedt's concepts will be outlined, and their usefulness and relevance to paediatricians involved in the planning for home care of children with CCNs will be described. The definition of ‘proximity’ includes ‘nearness in space or time’ (7). So, proximity can be temporal, a recent relationship or connection, or spatial, a physical closeness between bodies. Nortvedt discussed at length the power of relational responsibilities in morality, and how increased closeness resulted in the promotion of ethical duties (8). We have a stronger duty to others the more proximate we are to them and the more our interests coincide with theirs. Nortvedt considered this ‘ethics of proximity’ critical to moral responsibility, in both human and professional circumstances (8,9). Nortvedt built on Scheffler's term ‘associative duties’, which necessitates one to prioritize in some manner the interests of one's associates over the interests of others (8). Associates, or the ‘experienced others’, include a broad set of relations: friends, spouses, children, and members of a particular group or social role to which one had specific previous connections (8,9). Proximity in time, space or both may lead to one's inclusion as an associate. Nortvedt recognized that claims of justice detract from this ethical framework: who will care for those who are not proximate to anyone capable of reacting to their needs (8,9)? How does proximity deal with concerns of fair allocation of scarce resources (8)? The ethics of proximity aims to protect and prioritize some basic moral intuitions about connection and care for those around us. Nortvedt argues that this ethical framework is needed to constrain the impersonal demands of justice (8). Proximity is not an absolute moral imperative, but represents a minimally sufficient type of care society requires to flourish (8). In fact, it would be unfair to expect only proximate individuals to undertake the care of associates: distributive justice, or rather different types of proximity, is necessary to fairly divide the burden of care across society. However, the ethics of proximity stops the focus on population and abstract ‘others’ from trumping the need to consider the care of the tangible, vulnerable ‘associate’ in front of you. The ethics of proximity may rationalize the redistribution of responsibilities associated with transferring care from the hospital to the home of a child with CCNs. It underscores who takes on care, as well as how those more distal to a child with CCNs can and should be involved to ease the care burden. Issues of proximity need to be considered early in the admission, long before detailed planning for discharge home. An overriding dilemma when a child needs complex care at home is the need for proximity to the experts, who may be geographically distant from the home, and the need for physical proximity to the social support network, including family, who may live far from the referral centre. The latter is a greater social and psychological need than the former, and consideration should be given to the use of technology as a way of giving ‘proximity’ to the experts. To understand the importance of proximity for individual children, the extent of existing connections, beyond just the family and child, need to be known. Inquiries should be made about the family's social networks, always remembering that these may be sparse or nonexistent for some families. Even when extended family members and an extensive social network exist, proximity between caregiver and child could be perilous for both (10). There may be criticism of parental decisions or a lack of understanding of the complexity of the care the child now needs. Thus, professionals involved in the care of children with CCNs at home must understand the need to provide long-term support to the parents. Also, professionals have a role in providing explanation and support to maintain assistance from extended family members and the community. When there is some clarity on the complexity of care needed for home care, preliminary contact should be made with the team nearest the home that will be providing care and support. If this team is in another jurisdiction, potential problems should be identified, particularly funding for equipment and care, and solutions developed. Gaps in care provided by professionals will often be covered by family members. Closeness to the patient brings with it a sense of responsibility and a willingness to take on these extra responsibilities. Detailed planning for discharge home should take place as soon as possible. This may be much earlier than ‘experts’ may imagine, and there may need to be a period of transition to a paediatric unit closer to home before the child may finally go home. During these periods of transition, close contact must be maintained with all professionals involved in the child's care. The aim of all professionals should focus on finding ways to encourage the unparalleled benefits of home in the care of the child. The hospital, no matter how friendly, is always foreign and parents always perceive a lack of control over their child's care. Family reunification at home has no equivalent in hospital. Throughout the time that children like Kevin are in hospital, and long before detailed plans are made for transitioning to home, it is imperative to foster and maintain proximity, whether pre-existing or established anew. The care of a child with very complex needs leads to a major redistribution of responsibilities. Attention to issues of proximity can lead to a more just distribution of these new responsibilities. We believe that many, perhaps most, paediatricians behave in this fashion. However, the framework of proximity may help paediatricians to understand the rationale behind these actions. The authors thank Walter Glannon for his constructive feedback on drafts of this paper. They appreciate the thoughtful reviews of this article by anonymous members of the Respiratory Medicine Department at the Alberta Children's Hospital. The authors also thank the editors for their assistance in making this paper acceptable for publication.

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