Discussion

The application of ethical values to acute care for patients at home is a new area as home-based acute healthcare is in its relative infancy. The responses are those of health professionals who are all engaged in home healthcare, although predominantly in adults. The current model of care throughout Australia for paediatric acute non-inpatient services is for nurses to visit the child’s home to deliver care: hospital-in-the-home rather than, for example, outpatient infusion services. The questions were designed to test various aspects of the four tenets of medical ethics in this clinical environment.

Patient autonomy refers to respectful treatment of patients by ensuring disclosure of information and not constraining their right to make their own informed decision. This is exemplified in the first question where information is given to the patient and she decides between home care and hospital admission. The strong vote that this was ethical indicates that participants feel there is sufficient evidence that home care is effective and safe. Insufficient information is given to assess whether there was patient coercion, which is prohibited by the concept of autonomy, but on the face of it, the process appears ethical. The decision becomes less clear, as highlighted by the drop in ‘ethical’ votes, when the patient’s mother’s autonomy is included. This question also raised whether different reasons underpinning her autonomy (exhaustion, lack of funds) affect the ethical construct, but these were not viewed by participants as having as much impact as the mere fact of her opposing decision. In adult medicine, the patient’s autonomy is paramount with the wishes of spouses and children being secondary.20 21 In paediatrics, autonomy regarding medical care lies with those (usually the parent/s) holding parental rights, but the age at which the child’s best interests are served by the child being autonomous is debated. More participants felt it was ethical for a 16 years old to provide consent than a 14 years old and this may reflect some lack of familiarity with the care of younger mature adolescents. The age at which a child can legally provide consent is different in different countries. In the UK, the test of ‘Gillick competence’ allows a minor under the legal age of consent (16 years) to be assessed as sufficiently mature to understand and make their own decisions and provide consent. This is in line with the ethical tenet of autonomy, which relies on competence. This medical case law has essentially been adopted in Australia and Canada, although only sporadically in the USA. Although adolescents in Australian and New Zealand hospitals are usually treated by paediatric/adolescent teams, the current limited reach of paediatric home care means that many adolescents at home are looked after by adult home care teams. The responses to this question raise the important issue of the need for adult home care providers to be upskilled in the specific ethical aspects of care needs for adolescents. However, even if consent is given by the adolescent, each home care service may have its own rules about whether an adult also needs to be present, which may supersede the ethical aspects of who ultimately provides consent.

Non-maleficence refers to the duty to avoid causing harm including pain, suffering and disablement. Beneficence refers to the duty to actively promote good for patients, to defend their rights and to remove conditions that will cause harm. Although they are sometimes seen as two sides of the same coin, one can obey the dictates of non-maleficence simply by refraining from acting, but beneficence requires positive action. Several questions highlighted these dual tenets, essentially creating an ethical dilemma, including provision of potentially invasive services in her place of sanctuary: beneficence of active care provision for her health, but non-maleficence requires not to the detriment to her psyche. However, as long as the patient is fully informed and has consented, autonomy dictates that we should not be paternalistic. Any detrimental effects may also differ between short episodes of acute care and ongoing chronic care where medical equipment might be a permanent fixture. The benefits and harms are also raised in the question on intramuscular injections, with increasing number (and therefore pain) correlating with decreasing acceptance. This adds a level of complexity when deciding on the ethical imperatives between the three options of home care, intramuscular injections and the small but serious potential harm of a general anaesthetic.

The issue of household domestic violence raises to whom the beneficence and non-maleficence need to be applied. In this situation there is an obligation of specific beneficence to the patient, and it potentially even increases the imperative for a professional to visit the home. However, the ethical balance shifted for non-responders when non-maleficence needed to be considered for a staff member entering a potentially unsafe situation. Since there is a moral obligation to both, other aspects should be considered to guide decision-making such as the vulnerability of the individual and the risk of potential harm to either party, and for that more information is required. It is, however, worth stating that it is rare for domestic violence to be perpetrated against outsiders, and that the balance of most home healthcare providers is to provide the care and, if necessary, have two staff members visit together.

Finally, justice refers to how benefits and burdens should be distributed. It mandates the fair medical treatment of patients, with equal situations being treated equally, and unequal situations being treated in proportion to their inequalities. A large majority of participants felt it was not just to provide inferior treatment at home compared with what would be offered in hospital, reflecting the importance of physiotherapy in CF care. This is important because the concern around home care being inferior is a barrier to acute home care for many institutions and clinical staff.22 23 Robust evidence that home care is as efficacious and safe as hospital care for children is increasing, but more is needed.24 Of note, most home programmes only provide daily physiotherapy at home compared with twice daily in hospital, which is therefore already less, yet this is considered acceptable by respiratory physicians. The concept of ‘good enough’ has been discussed regarding parenting where perfection is not deemed necessary. It may be appropriate to apply the same concept to home services where the intensity of services is lower, but the quality must be as high. We did not explore how good would be considered ‘good enough’ (eg, physiotherapy via telehealth, a physiotherapist visiting alternate days) or compare this with the risks of inpatient admission. The other aspect is the balance of unequal situations. In a recent study of home intravenous antibiotic treatment for cellulitis, it was shown that parent and child quality of life was significantly higher at home and it cost three times less for the family than in hospital.24 25 The efficacy level (the primary outcome) for non-inferiority was set lower for home than in hospital at the start of the trial26 because of the recognition of the benefits of home and acceptance of a proportionally lower level of efficacy, although efficacy was actually found to be higher at home. Unequal situations were tested in the question around maternal reasons for wanting her daughter to have a hospital admission. That the lowest response rate was recorded for whether saving for a family holiday was an ethical reason for not wanting home care may reflect the lack of paediatric healthcare professionals in the audience, as in paediatrics the child is considered within the holistic sphere of the family, and family well-being is considered an important component.

Study limitations are that it only evaluated opinions of those providing home services, and while a high proportion of participants engaged, it was a small survey. The majority predominantly provide care to adult patients, so would be less familiar with considering ethical aspects of paediatric care at home. The patient was chosen as an adolescent for this reason, but the answers around age of consent and parental respite may have been answered differently by hospital paediatricians and other healthcare providers. Additionally, because it was not completely anonymous (the technology was unavailable for electronic voting) people may have felt peer pressure to vote similarly. The mitigation for this was that the way which people voted (red or blue colour of vote) was only visible from the front and the participants were all facing forward. Additionally, the differences in proportions of votes for different questions suggest that this factor was not strong. One other limitation is that questions were limited to clinical dilemmas, and did not include other ethical dimensions to acute home care such as organisational issues (eg, rationing or payment of services27) and research.

The tenets of medical ethics do not aim to provide answers, or even guidelines, for managing moral issues; rather they provide a framework to identify and reflect on them. These results can provide a benchmark against which surveys of other groups regarding acute home care in children can be compared. The next important step will be to obtain the opinions of patients, families and other healthcare providers. The results show the relevance of considering ethical aspects of the provision of home care, both in building a service and in providing and constantly improving the quality of delivering acute medical care to children at home.