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Clinical ethics
PAPER
Adherence in paediatric renal failure and dialysis: an ethical analysis of nurses’ attitudes and reported practice Joe Scott Mellor,1 Sally-Anne Hulton,2 Heather Draper3 1
Leicester Medical School (Medical Student), University of Leicester, Leicester, UK 2 Birmingham Children’s Hospital NHS Trust, Birmingham, UK 3 Medicine Ethics Society and History, School of Health and Population Sciences, University of Birmingham, Edgbaston, UK Correspondence to Joe Scott Mellor, Leicester Medical School, University of Leicester, C/o Dawn Mellor, 108 Spark Lane, Mapplewell, Barnsley, South Yorkshire S75 6AD, UK; [email protected] Received 25 June 2013 Revised 30 October 2013 Accepted 17 December 2013 Published Online First 10 January 2014
ABSTRACT Minors have difficulty adhering to the strict management regimen required whilst on renal dialysis for chronic renal failure. This leads to ethical tensions as healthcare professionals (HCPs) and parents try, in the minor’s best interests, to ensure s/he adheres. All 11 dialysis nurses working in a large, regional paediatric dialysis unit were interviewed about their perceptions and management of non-adherence and the ethical issues this raised for them. Participants reported negative attitudes to nonadherence alongside sympathy and feelings of frustration. They discussed the competing responsibilities between nurses, parents and minors, and how responsibility ought to be transferred to the minor as s/ he matures; the need for minors to take responsibility ahead of transferring to adult services; and, the process of transferring this responsibility. Our discussion concentrates on the ethical issues raised by the participants’ reports of how they respond to nonadherence using persuasion and coercion. We consider how understandings of capacity, traditional individual autonomy, and willpower can be used to comprehend the issue of non-adherence. We consider the relational context in which the minor receives, and participates in, healthcare. This exposes the interdependent triad of relationships between HCP, parent and minor and aids understanding of how to provide care in an ethical way. Relational ethics is a useful alternative understanding for professionals reflecting upon how they define their obligations in this context.
INTRODUCTION
To cite: Mellor JS, Hulton S-A, Draper H. J Med Ethics 2015;41:151–156.
In 2010, there were approximately 30.7 per million paediatric patients (aged 0–14 years) receiving renal replacement therapy in Europe.1 Of these, around 36% were receiving either peritoneal dialysis or haemodialysis. Establishing and maintaining adherence for minors receiving dialysis treatment is made difficult2 by harsh fluid and dietary restrictions (eg, fluids can be restricted to 500 mL/day3), which are easily breached, and a tendency among paediatric patients towards medication nonadherence. Short-term non-adherence can lead to life-threatening problems such as pulmonary oedema or hyperkalaemia, and in the long term to cardiovascular disease and changes in bone development. Maintaining adherence is, therefore, a necessity; yet, as we shall argue, its enforcement generates ethical tensions for minors, parents and healthcare professionals (HCPs).
There is a paucity of literature discussing: (A) the views of HCPs about paediatric non-adherence, and (B) the ethical issues that arise when minors do not adhere to treatment for chronic renal failure. The majority of the ethical literature has focused on adults, and has shown that HCPs are sceptical towards patients’ claims about adherence,4 become quickly frustrated with non-adherence4 5 and focus “on developing and maintaining a therapeutic relationship with patients while being ‘the bad guys’.”4 In contrast, HCPs seem to adopt more empathetic attitudes towards paediatric patients,6 and this may be why some have suggested incentivisation schemes to tackle non-adherence.7 This paper will examine the ethical issues that non-adherence in paediatric chronic renal failure generates using data gathered from nurses on a paediatric dialysis unit.
METHOD All 11 paediatric fully trained, senior and experienced nurses working in a large, regional inner city paediatric dialysis unit were interviewed. In this unit, patients are cared for by a named haemodialysis nursing sister who supervises each haemodialysis session in the hospital. These take place over 3–4 h 3–5 times/week and the nurses develop a close bond with the child and family over time. The two nurses supervising peritoneal dialysis do so in the community, assisting parents’ management of home-based overnight cycling dialysis, and also establish close liaison with the child and family. The nurses were interviewed about their experiences of non-adherence, responses to it, and views about the ethical tensions generated and how these could best be resolved (box 1). After the pilot interview, it was anticipated that participants may struggle to answer question 2. Therefore a series of statements (box 2) detailing potential ethical tensions were added that were then discussed with the participants. Nurses were chosen as they work most closely, and spend more time, with the minors and their families and were, therefore, most likely to provide greater in-depth accounts of the issues than other HCPs. No new data emerged in the final interview but we cannot be confident on this basis alone that saturation was reached as our sample size was small and it is possible that if it had been larger, new data may have emerged. The sample did, however, include the whole population of relevant nurses working on the unit. Interviews (average: 49 min, range: 27–72 min) were digitally recorded,
Mellor JS, et al. J Med Ethics 2015;41:151–156. doi:10.1136/medethics-2013-101659
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Clinical ethics Box 1 Topic guide summary The topic guide had five broad, open questions, each of which had prompts to stimulate conversation should the participant struggle to answer the initial question. The questions were as follows: 1. Please could you describe some examples of non-adherence in dialysis? 2. Please could you describe some ethical dilemmas which arise due to non-adherence? 3. In what ways does the response of staff change according to what they think the reasons are for non-adherence? OR How does the team at your hospital usually respond to ethical dilemmas? 4. How do you think we should go about improving adherence? 5. How does non-adherence affect the child’s prospect of a future transplant?
Development Department at the Birmingham Children’s Hospital also approved the study.
RESULTS Two overarching themes emerged: (1) participant perceptions and experiences of non-adherence, and (2) participant responses to non-adherence. Within each theme there were several categories (figure 1). Reported themes provide a background of participant views to aid understanding of the pertinent issues. Some themes are not reported below, in order to discuss in detail those which were most significant.
The perception and experience of non-adherence Participants struggled with the issue of how to balance the responsibilities of the minor, parent and HCP, especially with their sense that responsibilities passed between parties. They thought that minors need to learn to take some responsibility in order to prepare them for adulthood: …you’ve got to try and give them some control but … it’s very difficult especially in that age group like adolescents. (N2)
transcribed verbatim, anonymised and analysed using conventional content analysis.8 Conventional content analysis was used to analyse the transcripts from a ground up approach as there was no current theory base to direct analysis. Code derivation was directed by the data to allow more reflective themes to be generated. Coding was finalised after immersion (during transcription and, reading and rereading the transcripts) in the data. During the coding process, a second researcher independently performed and verified coding, and a second round of coding was undertaken to ensure completeness. Afterwards, the results were discussed within the team and the codes and themes agreed upon. Codes were indexed and charted to aid analysis as codes were associated into themes. Transcripts have been repeatedly reviewed since. The data was ‘cleaned’ to remove extraneous ‘hums’, ‘errs’, etc. The results were presented to the unit at the end of the project and positively received although not formally validated. Ethical approval was sought and granted by the BMedSc Population Sciences and Humanities Internal Ethics Review Committee at the University of Birmingham. The Research and
They were unsure, however, “if this would be too important an area to give them (the minor) ultimate responsibility” (N5), believing that it is important to achieve a balance between overburdening and overprotection when transferring responsibility for decision-making to the minor as s/he matures: …some parents … they give too much responsibility so it’s … balancing what suits each person, the mother and the child. (N1)
Participants thought adherence in younger minors was more successfully achieved because the parents have more control over their behaviour, whereas adolescents generally spend more time away from their parents’ direct sphere of influence: …some parents find it easier when the children are small because you are more directive. (N8)
Paediatric nurses share the care of patients with parents. Some participants thought that the boundary between professional and parental responsibilities is clear: …parents’ responsibility is [for] the things that go on at home and the nurses’ responsibility is [for] things that go on here. (N7)
Others thought they adopted some parenting roles in relation to minors, suggesting that the division was actually less clear-cut:
Box 2 Topic guide after pilot interview 1. Some participants have found that there is a tension between wanting to allow the child to do what they want while also trying to do what is in their best interests 2. It could be said that there is a tension between wanting to do what is in the child’s best interest while trying to enable them to learn to take care of themselves 3. Participants have previously discussed how doing what is in the child’s best interests can put pressure on the healthcare professional-patient relationship 4. Some participants have said that it can be hard to judge where the line is between nurse and parent responsibility 5. Some previous participants have discussed how the parent’s responsibility to do what is in the best interests of the child can put a strain on their own personal relationship with the child 152
…your own parental instinct kicks in a little bit … it is all part of your parental side that’s taking over from your nursing side. (N6)
Participants reported reacting negatively to non-adherence, describing their frustration with parents and minors, reflecting the difficulties of working on the dialysis unit: …it was just so frustrating that some [ parents] just go from one extreme to the other … do you understand or do you not care? They’re just so blasé about it do you not realise we’re changing the meds for a reason, we’re giving this fluid restriction for a reason, we’re telling you all this keep them clean keep them dry for a reason. (N3) …they’ve [the minors] had all the input you can offer but yet they still decide to cheat so it’s really … frustrating. (N9)
As the previous comment reflects, participants used pejorative terminology to describe non-adherent behaviour. Some participants referred to non-adherent behaviour as cheating: Mellor JS, et al. J Med Ethics 2015;41:151–156. doi:10.1136/medethics-2013-101659
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Clinical ethics
Figure 1 Main themes and categories. …if they’re young and they’re cheating and they’re old enough to know that they’re cheating it’s no different to the older ones except for maybe the older children are probably a little more clever in how they go about it. (N6)
Participants also felt that some patients were dishonest in their reporting of their behaviours which added to their difficulties in managing care and also maintaining a positive attitude to patients who were non-adherent: …teenagers that have lied and said … I haven’t drunk. (N5)
Despite this the participants were also sympathetic to the impact that the management regimen has on the minor, making the minor’s life difficult: …they’re [the minor] focused, their main focus for the whole day is where can they get a drink. (N1) …they’re fluid restricted, there’s the diet, the medicines, the dialysis it’s a huge impact on their lives. (N2)
Non-adherent behaviour was regarded as a reflection of typical adolescence, and peer pressure was also an identified factor at this age: …peer pressure with adolescents … all their friends are eating this and drinking this and … being an adolescent is hard enough. (N2)
Participants were also sympathetic to the difficulties faced by parents enforcing the management regimen, and recognised the adverse implications for family life when a minor is on dialysis, including pressures on the minor-parent relationship: …they [the parents] have to be the ones to be telling them ‘No’ all the time I think that does leave a bit of a strain really because they’re not just a parent but they’re being seen as a bad person. (N6)
They were also sensitive to the potential for the minor’s condition to dominate family life and could empathise with these difficulties: Mellor JS, et al. J Med Ethics 2015;41:151–156. doi:10.1136/medethics-2013-101659
…parents have other focuses … daily management of the household and the rest of the family and work commitments and her husband’s commitment. (N1) …we take the children on for holidays … you can see how for the 24 h period you’re constantly being bombarded with medical issues so it’s … very difficult to have a time where you can just forget that the child is a renal patient. (N5)
Responses to non-adherence A variety of responses to non-adherence were reported but participants referred to being guided by a central principle of acting in the minor’s best interest: …at the end of the day our most important objective is doing the very best for their child. (N6) …bringing them back [to hospital] is in their best interests but they don’t actually learn from that because they know if they come in heavy and finish heavy, you’ll just bring them back the next day. (N7)
Concentrating on the minor’s best interest can put a strain on the relationship between the nurse and minor because it requires the nurse to enforce behaviour that the minor finds unpleasant and undesirable: …it can sometimes put pressure on but … if you try and work with the child and the family you can … alleviate … you can explain again why the importance of compliance … is in their best interests. (N9)
Participants reported using persuasion to improve adherence: …praise can be easy to do in a child you know on a younger child you can do star charts that excites them. (N1) …we’ve had a few occasions when we’ve had a child refuse to go on the machine … so we have to start using play tactics with them. (N11)
Three kinds of coercive practices were reported: ‘telling off,’ restraint and hospitalisation. Participants reported using overt 153
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Clinical ethics disapproval, a contrast to the norm of non-judgemental nursing, as a means of altering behaviour: …we do tell them off but we explain why we’re telling them off … I can’t remember any child falling out with us telling them off. (N4)
Two participants discussed how physical restraint was sometimes used to facilitate treatment when a minor resisted: …the ultimate [is] the child who refuses treatment outright … with a younger child … below 10, we have sort of held them … with an older child … we wouldn’t … restrain a child of over … 12. (N10) …we don’t like to restrain right but when you’re dealing with a [central venous catheter] it’s very crucial that the child has to be kept still. (N11)
Hospitalisation, as a means of ensuring a controlled environment in which adherence could be imposed, was also reported as a response to non-adherence, though hospitalisation, or the threat of it, only works as a means of altering behaviour if the minor prefers to be at home: …he knows if needs be we’ll admit him but a lot of the children are very familiar with us and quite like being here so they don’t see that as a punishment. (N7)
LIMITATIONS This study only interviewed one professional group (specialist nurses) in one dialysis unit and the results are not intended to be generalisable to all nurses or other professionals. The perspective of minors and their parents would have given a more complete picture of non-adherence and the reactions of the staff, as patients and parents may have reported other behaviours and attitudes experienced, and may have experienced their interactions with the staff differently to the staff themselves. Nonetheless, the data collected is a representative view of this busy regional unit as the entire sample population participated and nurses do spend the most time with patients.
DISCUSSION Participants talked at length about the competing responsibilities of nurse, parent and minor, and the process of transferring responsibility to the minor as s/he matures ( particularly before reaching transition to adult services). Participants were sensitive to the need to protect the minor’s health, while still allowing the minor to develop into an adult capable of making decisions and providing self-care in the future, while being mindful that their patients are continually developing greater capacity for understanding and maturity as time passes. Bearing this in mind, we discuss the ethical issues relating to capacity, traditional individual autonomy and willpower to appreciate the vulnerability of a minor with renal failure. Then, we will consider the relational context in which the minor receives, and participates in, healthcare. According to Beauchamp and Childress “the autonomous individual acts freely in accordance with a self-chosen plan.”9 To be self-determining means voluntarily acting according to one’s desires and values and thus determines how one’s life takes shape.10 Interference in an autonomous individual’s valuedriven behaviour in that individual’s interests, is paternalistic and undermines self-determination.10 Whether and when minors achieve autonomy is contested. Ross argues that a “child’s decisions are based on limited world experience and so her decisions are not part of a well-conceived 154
life plan.”11 Buchanan and Brock also argue that one’s desires and values need to have been consistent and well-defined in order to be an autonomous will.12 A child may have “limited world experience,”11 and insufficient time to develop a strong set of desires and values as a basis for action. Eekelaar argues that minors have three interests: basic, developmental and autonomy and, where these conflict, basic and developmental interests should take precedence over enabling the development of autonomy.13 On this basis, Herring argues that minors can only be permitted to make what others regard as a ‘bad decision’ where this does not impact on their well-being.14 Accordingly, although a minor should usually be free, for example, to choose when and what to eat and drink (within reason) as part of developing his/her own tastes, character and choices, in the context of renal failure, giving a minor these freedoms may ultimately threaten the emergence of a fully developed autonomy. Capacity, unlike autonomy, is decision specific. The threshold level of capacity is relative to the risks and the required understanding and maturity to make a decision in a given context, accordingly, distinction can be drawn between consenting to a recommended course of action and refusing consent to the same recommendation.12 The view that decision-making capacity may vary according to the nature of the risks in question is, however, contested. Wicclair, for example, argues that our reasons for ensuring decision-making capacity may be stronger where the risks are greater, but this does not necessarily mean that greater capacity for decision-making is required to make a decision where such risks are entailed.15 For a minor to consent to dialysis treatment, s/he only needs demonstrate sufficient capacity to follow the recommendation of the doctor acting in his/her best interests. Conversely, a greater degree of understanding is required to refuse dialysis completely where to do so will result in death. When a minor who lacks capacity refuses treatment, interventions can be given in the minor’s best interests with parental proxy consent. This suggests that different thresholds operate in relation to consent and refusal of consent (figure 2). Deciding how to respond to a refusal to consent to a recommended treatment becomes more difficult when a minor is on the border of, or becomes, competent,16 and the closer the minor is to age of majority. As the minor’s decision-making faculties mature, his/her capacity for autonomous decision-making also increases alongside better-defined desires and values that will drive his/her decision making. Moreover, non-adherence in the context of paediatric kidney failure may not simply reflect a refusal to take medication or treatment. It may also reflect an understandable weakness of will in relation to a range of necessary behavioural constraints persisting over months or years. Our participants recognised that constantly adhering to the fluid and dietary lifestyle restrictions necessary for dialysis requires immense willpower, over a prolonged period. Extreme thirst and peer pressure can place a great strain upon a minor’s ability to adhere, which together with potentially underdeveloped desires and values can lead to what Scoccia terms ‘low autonomy desires’10 motivating behaviour. Ideally, an autonomous person is able to suppress a firstorder desire in order to fulfil a second-order desire.17 In reality, many of us are weak-willed when it comes to resisting first order desires but, as Hill argues, weakness of will is compatible with autonomy (though absence of will would not be).18 This distinction raises the possibility that weakness of will can frustrate that which is autonomously desired. Likewise, individuals can be overwhelmed by their first-order desires, which may also undermine their autonomy by causing them to sabotage that Mellor JS, et al. J Med Ethics 2015;41:151–156. doi:10.1136/medethics-2013-101659
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Clinical ethics
Figure 2 Capacity judged in relation to the risks involved. which they actually want; the line of argument apparently used in legal judgement in relation to Re MBi (1997).19 It may, then, be a mistake to assume that a minor (even one who has capacity) who does not adhere to the rigorous recommended behaviour on dialysis is refusing or otherwise withholding consent. To take one example, that of thirst; the drive to quench thirst may place a huge strain upon a minor’s willpower to adhere and failing to resist may demonstrate weakness of will rather indicating that the minor either places no value on his health or doesn’t understand the consequences of his behaviour. Whether or not this weakness is a character flaw—as some of the pejorative statements our participants made might suggest— may depend on how strongly the urges that run counter to adherence are felt as well as how mature the minor is and how determined are his/her parents and what else is reasonably competing for their attention. Recognising the nuances of autonomy in relation to adolescents still leaves open the question of what is the HCPs’ obligation to provide good care in this context. The ethics of care, as described by Tronto,20 recognises the relational basis of healthcare. Within the context of paediatric renal failure, one sees an interdependent triad of relationships between HCP, parent and minor, each of which can flourish or be eroded. The HCP-patient relationship is a central facet of healthcare and therefore needs to be sustained for healthcare to be adequately provided. As Epstein suggests, patients “rely not only on analytic cognitive processing but also on intuitions, feelings and communication with trusted others” and strong HCP-patient “relationships can enhance autonomy by helping patients to process complex decisions that otherwise overwhelm the cognitive capacity of a single individual.”21 Epstein argued that through these relationships a ‘shared mind’ is achieved thus representing relational autonomy whereby decisions take into account the interdependent nature of patients. From these relationships responsibilities arise,14 and responsibility is what Tronto
i
The case of Re MB involved a pregnant woman who needed and originally wanted a caesarean section to save the life of herself and her child. As the procedure was about to be performed, she panicked and withdrew consent because of her needle phobia. The Court of Appeal ruled that at the point she refused consent, she lacked capacity due to her fear and panic, and that the procedure could therefore be carried out.
Mellor JS, et al. J Med Ethics 2015;41:151–156. doi:10.1136/medethics-2013-101659
attributed as ‘Caring for’20—one of the four elements of care ethics. As this responsibility arises from relationships, HCPs need to define these relationships carefully so as to be accountable for the care they provide to minors, while minors, relative to their development and maturity, should also take some responsibility for their own health. Responsibilities include being able to discern the care needs of the minor (Caring about20), and being competent in providing these care needs (Caregiving20) so that HCPs are able to recognise how best to provide the care as well as being capable of providing it. These shared responsibilities, can be used to justify some of the responses to non-adherence reported by the participants in the context of weakness of will and failure of will. We will take each in turn. Persuasion is different to coercion, though there may be a fine line between the two. Powers notes, for example, that persuasion entails “no willingness to harm, no threat, a positive result, another choice available, and no choice constrained”22 unlike coercion for which much greater justification is therefore required. Coercion can be detrimental as “imposing treatment on young people where they refuse could damage the young person’s current and future relationships with healthcare providers, and undermine trust in the medical profession.”23 Therefore, while providing care, HCPs should continuously monitor the response of the minor (Care receiving20) so that the HCP can adapt the provision of care. To better tailor their care, HCPs will want to discuss different aspects of the care with the minors and their parents, while voicing their own priorities and justifying their responses. This allows each member of the triad to raise his/her concern so that a compromise can be reached that permits the provision of optimal care while enabling the interdependent triad of relationships to flourish. As discussed earlier, minors, particularly younger ones, may be acting from underdeveloped desires and values and this needs to be incorporated into the ‘shared mind’ concept. As minors develop and mature, however, they may begin to take on more responsibility and adopt a more established position within the ‘shared mind.’ Throughout, HCPs’ responsibilities mean that they must be continually mindful of the severity of the consequences of non-adherence; fluid overload from fluid non-adherence, perhaps due to weakness of will, can be life threatening. This scenario still provides a strong indication for dialysis and therefore persuasive or coercive methods may eventually be justified. 155
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Clinical ethics The persuasive methods described by the participants, such as rewards and play tactics are clearly permissible because a minor is still free to resist and because they entail no threat. Participants also describe ‘telling off,’ restraint and hospitalisation as responses to non-adherence, that are clearly motivated by their perception of the minor’s interests (ie, they are not reported as acts of malice or frustration). Of these ‘telling off ’ is perhaps the most surprising but the least worrying in terms of coercion. It is surprising in the sense that it contradicts the requirement to practice in a way that is non-judgemental but its effectiveness presumably trades on this, as an unexpected demonstration of disapproval may reinforce the seriousness of nonadherence. ‘Telling off ’ may also reflect the tendency to adopt a parental role (by becoming a disciplinarian as well as carer). Although these methods are paternalistic (assuming the minor has some autonomy), they are only weakly paternalistic for the minor remains free to disregard attempts to change his/her behaviour. They may, in addition enhance the minor’s autonomy if they help a minor achieve his/her second order desires. Restraint and hospitalisation are highly coercive because the minor has no choice but to adhere as his freedom of movement and ability to resist is restricted. Our results reflect those of Lewis et al24 in that our participants were more uncomfortable restraining more mature minors. It is likely that this reflects increasing respect for the minor’s emerging autonomy and the need to proceed with, what Ross terms, proportionate respect.25 Coercive action needs to be carefully managed and justified in terms of the health benefits and taking into account the potential long-term damage to nurse/patient relationship and bearing in mind the harms caused by the coercion, and will require the consent of a person with parental responsibility. Any justification will also require consideration of the extent to which a minor is actively and autonomously deciding not to adhere. In the case of younger minors, the desire to adhere (or not) is unlikely to be autonomously chosen so coercion per se poses less of an issue, although any harms generated by the means of coercion (eg, restraint) would remain a factor. In the case of older minors, there may be at least some justification for coercion that bolsters or strengthens the will to do what one wants: it is easier to resist temptation when it is removed from sight and reach.
CONCLUSION The issue of coercion in the context of adherence to the lifestyle restrictions necessitated by paediatric renal failure needs to be considered alongside the division of labour between parents and nurses when it comes to safeguarding a minor’s health. Our participants clearly felt that parents, especially those of younger minors, shoulder some of the responsibility for adherence but at the same time, they recognised that the boundaries between responsibilities can become blurred. To some extent the coercion applied to ensure adherence by, for example, hospitalisation, is no different in scale to that applied by some parents in the home, for example, putting locks on taps, toilets and fridges. Moreover, achieving adherence, and the concomitant benefits, is presumably one goal of hospitalisation as a response to non-adherence. In this context, where a significant contribution to the minor’s future prospects depends upon adherence to non-medical intervention-based measures, such as control of drinking and diet, the distinction between parental and professional roles is bound to be fluid. Relational ethics provides another way of reflecting upon how professionals could define
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their obligations in the context of responsibilities that are shared with parents and the minor, especially as the minor gains autonomy. Likewise, it is important to consider that not all nonadherences should be afforded the status of refusals of care or treatment, particularly in the context of adolescence. Correction notice This article has been corrected since it was published Online First. Questions 3 and 4 in Box 1 has been corrected. Contributors The idea for the study originated from S-AH. All the authors contributed to the study design. JSM collected and analysed the data supervised by S-AH and HD. The coding was checked by HD. JSM produced the first draft of the paper and S-AH and HD commented extensively on this and subsequent drafts, including making drafting changes. Funding The University of Birmingham; a small research budget is provided to all BMedSc students. Competing interests None. Ethics approval BMedSc Population Sciences and Humanities Internal Ethics Review Committee at the University of Birmingham, and the Research and Development Department at the Birmingham Children’s Hospital. Provenance and peer review Commissioned; externally peer reviewed.
REFERENCES 1
2 3 4
5
6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25
European Society for Paediatric Nephrology. ESPN/ERA-EDTA Registry—An update on the registry. 2012. http://espn-reg.org/files/ESPN%20ERAEDTA%20AR2010.pdf (accessed 15 Oct 2013). Simoni JM, Asarnow JR, Munford PR, et al. Psychological distress and treatment adherence among children on dialysis. Pediatr Nephrol 1997;11:604–6. Denhaerynck K, Manhaeve D, Dobbels F, et al. Prevalence and consequences of nonadherence to hemodialysis regimens. Am J Crit Care 2007;16:222–35. Williams AF, Manias E, Walker R. Adherence to multiple, prescribed medications in diabetic kidney disease: a qualitative study of consumers’ and health professionals’ perspectives. Int J Nurs Stud 2008;45:1742–56. Wens J, Vermeire E, Royen PV, et al. GPs’ perspectives of type 2 diabetes patients’ adherence to treatment: a qualitative analysis of barriers and solutions. BMC Fam Pract 2005;6:20. Lindsay Waters A. An ethnography of a children’s renal unit: experiences of children and young people with long-term renal illness. J Clin Nurs 2008;17:3103–14. Carton JS, Schweitzer JB. Use of a token economy to increase compliance during hemodialysis. J Appl Behav Anal 1996;29:111–13. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005;15:1277–88. Beauchamp TL, Childress JF. Principles of biomedical ethics. Oxford, New York: Oxford University Press, 2001:57–112. Scoccia D. Paternalism and respect for autonomy. Ethics 1990;100:318–34. Ross LF. Health care decisionmaking by children. Is it in their best interest? Hastings Cent Rep 1997;2:41–5. Buchanan AE, Brock DW. Deciding for others: the ethics of surrogate decision making. USA: Cambridge University Press, 1989:17–86. Eekelaar J. The emergence of children’s rights. OJLS 1986;6:161–82. Herring J. Medical law and ethics. Oxford, UK: Oxford University Press, 2012. Wicclair MR. Patient decision-making, capacity and risk. Bioethics 1991;5:91–104. Gillick V. West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402. Dworkin D. The theory and practice of autonomy. Cambridge, UK: Cambridge University Press, 1988:12–20. Hill T. Autonomy and self –respect. Cambridge, UK: Cambridge University Press, 1991:118–37. Re MB [1997] 2 FCR 541. Tronto JC. An ethic of care. In: Holstein MB, Mitzen PB, eds. Ethics in communitybased elder care. New York, NY: Springer Publishing Company, 2001:60–8. Epstein RM. Whole mind and shared mind in clinical decision-making. Patient Educ Couns 2013;90:200–6. Powers P. Persuasion and coercion: a critical review of the philosophical and empirical approaches. HEC Forum 2007;19:125–43. British Medical Association. Consent, rights and choices in health care for children and young people. London, UK: BMJ Publishing Group, 2001:106–26. Lewis I, Burke C, Voepel-Lewis T, et al. Children who refuse anesthesia or sedation: a survey of anesthesiologists. Paediatr Anaesth 2007;17:1134–42. Ross LF. Children, families and health care decision making. Oxford, UK: Oxford University Press, 1998:39–55.
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Adherence in paediatric renal failure and dialysis: an ethical analysis of nurses' attitudes and reported practice Joe Scott Mellor, Sally-Anne Hulton and Heather Draper J Med Ethics 2015 41: 151-156 originally published online January 10, 2014
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Clinical ethics
PAPER
Adherence in paediatric renal failure and dialysis: an ethical analysis of nurses’ attitudes and reported practice Joe Scott Mellor,1 Sally-Anne Hulton,2 Heather Draper3 1
Leicester Medical School (Medical Student), University of Leicester, Leicester, UK 2 Birmingham Children’s Hospital NHS Trust, Birmingham, UK 3 Medicine Ethics Society and History, School of Health and Population Sciences, University of Birmingham, Edgbaston, UK Correspondence to Joe Scott Mellor, Leicester Medical School, University of Leicester, C/o Dawn Mellor, 108 Spark Lane, Mapplewell, Barnsley, South Yorkshire S75 6AD, UK; [email protected] Received 25 June 2013 Revised 30 October 2013 Accepted 17 December 2013 Published Online First 10 January 2014
ABSTRACT Minors have difficulty adhering to the strict management regimen required whilst on renal dialysis for chronic renal failure. This leads to ethical tensions as healthcare professionals (HCPs) and parents try, in the minor’s best interests, to ensure s/he adheres. All 11 dialysis nurses working in a large, regional paediatric dialysis unit were interviewed about their perceptions and management of non-adherence and the ethical issues this raised for them. Participants reported negative attitudes to nonadherence alongside sympathy and feelings of frustration. They discussed the competing responsibilities between nurses, parents and minors, and how responsibility ought to be transferred to the minor as s/ he matures; the need for minors to take responsibility ahead of transferring to adult services; and, the process of transferring this responsibility. Our discussion concentrates on the ethical issues raised by the participants’ reports of how they respond to nonadherence using persuasion and coercion. We consider how understandings of capacity, traditional individual autonomy, and willpower can be used to comprehend the issue of non-adherence. We consider the relational context in which the minor receives, and participates in, healthcare. This exposes the interdependent triad of relationships between HCP, parent and minor and aids understanding of how to provide care in an ethical way. Relational ethics is a useful alternative understanding for professionals reflecting upon how they define their obligations in this context.
INTRODUCTION
To cite: Mellor JS, Hulton S-A, Draper H. J Med Ethics 2015;41:151–156.
In 2010, there were approximately 30.7 per million paediatric patients (aged 0–14 years) receiving renal replacement therapy in Europe.1 Of these, around 36% were receiving either peritoneal dialysis or haemodialysis. Establishing and maintaining adherence for minors receiving dialysis treatment is made difficult2 by harsh fluid and dietary restrictions (eg, fluids can be restricted to 500 mL/day3), which are easily breached, and a tendency among paediatric patients towards medication nonadherence. Short-term non-adherence can lead to life-threatening problems such as pulmonary oedema or hyperkalaemia, and in the long term to cardiovascular disease and changes in bone development. Maintaining adherence is, therefore, a necessity; yet, as we shall argue, its enforcement generates ethical tensions for minors, parents and healthcare professionals (HCPs).
There is a paucity of literature discussing: (A) the views of HCPs about paediatric non-adherence, and (B) the ethical issues that arise when minors do not adhere to treatment for chronic renal failure. The majority of the ethical literature has focused on adults, and has shown that HCPs are sceptical towards patients’ claims about adherence,4 become quickly frustrated with non-adherence4 5 and focus “on developing and maintaining a therapeutic relationship with patients while being ‘the bad guys’.”4 In contrast, HCPs seem to adopt more empathetic attitudes towards paediatric patients,6 and this may be why some have suggested incentivisation schemes to tackle non-adherence.7 This paper will examine the ethical issues that non-adherence in paediatric chronic renal failure generates using data gathered from nurses on a paediatric dialysis unit.
METHOD All 11 paediatric fully trained, senior and experienced nurses working in a large, regional inner city paediatric dialysis unit were interviewed. In this unit, patients are cared for by a named haemodialysis nursing sister who supervises each haemodialysis session in the hospital. These take place over 3–4 h 3–5 times/week and the nurses develop a close bond with the child and family over time. The two nurses supervising peritoneal dialysis do so in the community, assisting parents’ management of home-based overnight cycling dialysis, and also establish close liaison with the child and family. The nurses were interviewed about their experiences of non-adherence, responses to it, and views about the ethical tensions generated and how these could best be resolved (box 1). After the pilot interview, it was anticipated that participants may struggle to answer question 2. Therefore a series of statements (box 2) detailing potential ethical tensions were added that were then discussed with the participants. Nurses were chosen as they work most closely, and spend more time, with the minors and their families and were, therefore, most likely to provide greater in-depth accounts of the issues than other HCPs. No new data emerged in the final interview but we cannot be confident on this basis alone that saturation was reached as our sample size was small and it is possible that if it had been larger, new data may have emerged. The sample did, however, include the whole population of relevant nurses working on the unit. Interviews (average: 49 min, range: 27–72 min) were digitally recorded,
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Clinical ethics Box 1 Topic guide summary The topic guide had five broad, open questions, each of which had prompts to stimulate conversation should the participant struggle to answer the initial question. The questions were as follows: 1. Please could you describe some examples of non-adherence in dialysis? 2. Please could you describe some ethical dilemmas which arise due to non-adherence? 3. In what ways does the response of staff change according to what they think the reasons are for non-adherence? OR How does the team at your hospital usually respond to ethical dilemmas? 4. How do you think we should go about improving adherence? 5. How does non-adherence affect the child’s prospect of a future transplant?
Development Department at the Birmingham Children’s Hospital also approved the study.
RESULTS Two overarching themes emerged: (1) participant perceptions and experiences of non-adherence, and (2) participant responses to non-adherence. Within each theme there were several categories (figure 1). Reported themes provide a background of participant views to aid understanding of the pertinent issues. Some themes are not reported below, in order to discuss in detail those which were most significant.
The perception and experience of non-adherence Participants struggled with the issue of how to balance the responsibilities of the minor, parent and HCP, especially with their sense that responsibilities passed between parties. They thought that minors need to learn to take some responsibility in order to prepare them for adulthood: …you’ve got to try and give them some control but … it’s very difficult especially in that age group like adolescents. (N2)
transcribed verbatim, anonymised and analysed using conventional content analysis.8 Conventional content analysis was used to analyse the transcripts from a ground up approach as there was no current theory base to direct analysis. Code derivation was directed by the data to allow more reflective themes to be generated. Coding was finalised after immersion (during transcription and, reading and rereading the transcripts) in the data. During the coding process, a second researcher independently performed and verified coding, and a second round of coding was undertaken to ensure completeness. Afterwards, the results were discussed within the team and the codes and themes agreed upon. Codes were indexed and charted to aid analysis as codes were associated into themes. Transcripts have been repeatedly reviewed since. The data was ‘cleaned’ to remove extraneous ‘hums’, ‘errs’, etc. The results were presented to the unit at the end of the project and positively received although not formally validated. Ethical approval was sought and granted by the BMedSc Population Sciences and Humanities Internal Ethics Review Committee at the University of Birmingham. The Research and
They were unsure, however, “if this would be too important an area to give them (the minor) ultimate responsibility” (N5), believing that it is important to achieve a balance between overburdening and overprotection when transferring responsibility for decision-making to the minor as s/he matures: …some parents … they give too much responsibility so it’s … balancing what suits each person, the mother and the child. (N1)
Participants thought adherence in younger minors was more successfully achieved because the parents have more control over their behaviour, whereas adolescents generally spend more time away from their parents’ direct sphere of influence: …some parents find it easier when the children are small because you are more directive. (N8)
Paediatric nurses share the care of patients with parents. Some participants thought that the boundary between professional and parental responsibilities is clear: …parents’ responsibility is [for] the things that go on at home and the nurses’ responsibility is [for] things that go on here. (N7)
Others thought they adopted some parenting roles in relation to minors, suggesting that the division was actually less clear-cut:
Box 2 Topic guide after pilot interview 1. Some participants have found that there is a tension between wanting to allow the child to do what they want while also trying to do what is in their best interests 2. It could be said that there is a tension between wanting to do what is in the child’s best interest while trying to enable them to learn to take care of themselves 3. Participants have previously discussed how doing what is in the child’s best interests can put pressure on the healthcare professional-patient relationship 4. Some participants have said that it can be hard to judge where the line is between nurse and parent responsibility 5. Some previous participants have discussed how the parent’s responsibility to do what is in the best interests of the child can put a strain on their own personal relationship with the child 152
…your own parental instinct kicks in a little bit … it is all part of your parental side that’s taking over from your nursing side. (N6)
Participants reported reacting negatively to non-adherence, describing their frustration with parents and minors, reflecting the difficulties of working on the dialysis unit: …it was just so frustrating that some [ parents] just go from one extreme to the other … do you understand or do you not care? They’re just so blasé about it do you not realise we’re changing the meds for a reason, we’re giving this fluid restriction for a reason, we’re telling you all this keep them clean keep them dry for a reason. (N3) …they’ve [the minors] had all the input you can offer but yet they still decide to cheat so it’s really … frustrating. (N9)
As the previous comment reflects, participants used pejorative terminology to describe non-adherent behaviour. Some participants referred to non-adherent behaviour as cheating: Mellor JS, et al. J Med Ethics 2015;41:151–156. doi:10.1136/medethics-2013-101659
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Clinical ethics
Figure 1 Main themes and categories. …if they’re young and they’re cheating and they’re old enough to know that they’re cheating it’s no different to the older ones except for maybe the older children are probably a little more clever in how they go about it. (N6)
Participants also felt that some patients were dishonest in their reporting of their behaviours which added to their difficulties in managing care and also maintaining a positive attitude to patients who were non-adherent: …teenagers that have lied and said … I haven’t drunk. (N5)
Despite this the participants were also sympathetic to the impact that the management regimen has on the minor, making the minor’s life difficult: …they’re [the minor] focused, their main focus for the whole day is where can they get a drink. (N1) …they’re fluid restricted, there’s the diet, the medicines, the dialysis it’s a huge impact on their lives. (N2)
Non-adherent behaviour was regarded as a reflection of typical adolescence, and peer pressure was also an identified factor at this age: …peer pressure with adolescents … all their friends are eating this and drinking this and … being an adolescent is hard enough. (N2)
Participants were also sympathetic to the difficulties faced by parents enforcing the management regimen, and recognised the adverse implications for family life when a minor is on dialysis, including pressures on the minor-parent relationship: …they [the parents] have to be the ones to be telling them ‘No’ all the time I think that does leave a bit of a strain really because they’re not just a parent but they’re being seen as a bad person. (N6)
They were also sensitive to the potential for the minor’s condition to dominate family life and could empathise with these difficulties: Mellor JS, et al. J Med Ethics 2015;41:151–156. doi:10.1136/medethics-2013-101659
…parents have other focuses … daily management of the household and the rest of the family and work commitments and her husband’s commitment. (N1) …we take the children on for holidays … you can see how for the 24 h period you’re constantly being bombarded with medical issues so it’s … very difficult to have a time where you can just forget that the child is a renal patient. (N5)
Responses to non-adherence A variety of responses to non-adherence were reported but participants referred to being guided by a central principle of acting in the minor’s best interest: …at the end of the day our most important objective is doing the very best for their child. (N6) …bringing them back [to hospital] is in their best interests but they don’t actually learn from that because they know if they come in heavy and finish heavy, you’ll just bring them back the next day. (N7)
Concentrating on the minor’s best interest can put a strain on the relationship between the nurse and minor because it requires the nurse to enforce behaviour that the minor finds unpleasant and undesirable: …it can sometimes put pressure on but … if you try and work with the child and the family you can … alleviate … you can explain again why the importance of compliance … is in their best interests. (N9)
Participants reported using persuasion to improve adherence: …praise can be easy to do in a child you know on a younger child you can do star charts that excites them. (N1) …we’ve had a few occasions when we’ve had a child refuse to go on the machine … so we have to start using play tactics with them. (N11)
Three kinds of coercive practices were reported: ‘telling off,’ restraint and hospitalisation. Participants reported using overt 153
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Clinical ethics disapproval, a contrast to the norm of non-judgemental nursing, as a means of altering behaviour: …we do tell them off but we explain why we’re telling them off … I can’t remember any child falling out with us telling them off. (N4)
Two participants discussed how physical restraint was sometimes used to facilitate treatment when a minor resisted: …the ultimate [is] the child who refuses treatment outright … with a younger child … below 10, we have sort of held them … with an older child … we wouldn’t … restrain a child of over … 12. (N10) …we don’t like to restrain right but when you’re dealing with a [central venous catheter] it’s very crucial that the child has to be kept still. (N11)
Hospitalisation, as a means of ensuring a controlled environment in which adherence could be imposed, was also reported as a response to non-adherence, though hospitalisation, or the threat of it, only works as a means of altering behaviour if the minor prefers to be at home: …he knows if needs be we’ll admit him but a lot of the children are very familiar with us and quite like being here so they don’t see that as a punishment. (N7)
LIMITATIONS This study only interviewed one professional group (specialist nurses) in one dialysis unit and the results are not intended to be generalisable to all nurses or other professionals. The perspective of minors and their parents would have given a more complete picture of non-adherence and the reactions of the staff, as patients and parents may have reported other behaviours and attitudes experienced, and may have experienced their interactions with the staff differently to the staff themselves. Nonetheless, the data collected is a representative view of this busy regional unit as the entire sample population participated and nurses do spend the most time with patients.
DISCUSSION Participants talked at length about the competing responsibilities of nurse, parent and minor, and the process of transferring responsibility to the minor as s/he matures ( particularly before reaching transition to adult services). Participants were sensitive to the need to protect the minor’s health, while still allowing the minor to develop into an adult capable of making decisions and providing self-care in the future, while being mindful that their patients are continually developing greater capacity for understanding and maturity as time passes. Bearing this in mind, we discuss the ethical issues relating to capacity, traditional individual autonomy and willpower to appreciate the vulnerability of a minor with renal failure. Then, we will consider the relational context in which the minor receives, and participates in, healthcare. According to Beauchamp and Childress “the autonomous individual acts freely in accordance with a self-chosen plan.”9 To be self-determining means voluntarily acting according to one’s desires and values and thus determines how one’s life takes shape.10 Interference in an autonomous individual’s valuedriven behaviour in that individual’s interests, is paternalistic and undermines self-determination.10 Whether and when minors achieve autonomy is contested. Ross argues that a “child’s decisions are based on limited world experience and so her decisions are not part of a well-conceived 154
life plan.”11 Buchanan and Brock also argue that one’s desires and values need to have been consistent and well-defined in order to be an autonomous will.12 A child may have “limited world experience,”11 and insufficient time to develop a strong set of desires and values as a basis for action. Eekelaar argues that minors have three interests: basic, developmental and autonomy and, where these conflict, basic and developmental interests should take precedence over enabling the development of autonomy.13 On this basis, Herring argues that minors can only be permitted to make what others regard as a ‘bad decision’ where this does not impact on their well-being.14 Accordingly, although a minor should usually be free, for example, to choose when and what to eat and drink (within reason) as part of developing his/her own tastes, character and choices, in the context of renal failure, giving a minor these freedoms may ultimately threaten the emergence of a fully developed autonomy. Capacity, unlike autonomy, is decision specific. The threshold level of capacity is relative to the risks and the required understanding and maturity to make a decision in a given context, accordingly, distinction can be drawn between consenting to a recommended course of action and refusing consent to the same recommendation.12 The view that decision-making capacity may vary according to the nature of the risks in question is, however, contested. Wicclair, for example, argues that our reasons for ensuring decision-making capacity may be stronger where the risks are greater, but this does not necessarily mean that greater capacity for decision-making is required to make a decision where such risks are entailed.15 For a minor to consent to dialysis treatment, s/he only needs demonstrate sufficient capacity to follow the recommendation of the doctor acting in his/her best interests. Conversely, a greater degree of understanding is required to refuse dialysis completely where to do so will result in death. When a minor who lacks capacity refuses treatment, interventions can be given in the minor’s best interests with parental proxy consent. This suggests that different thresholds operate in relation to consent and refusal of consent (figure 2). Deciding how to respond to a refusal to consent to a recommended treatment becomes more difficult when a minor is on the border of, or becomes, competent,16 and the closer the minor is to age of majority. As the minor’s decision-making faculties mature, his/her capacity for autonomous decision-making also increases alongside better-defined desires and values that will drive his/her decision making. Moreover, non-adherence in the context of paediatric kidney failure may not simply reflect a refusal to take medication or treatment. It may also reflect an understandable weakness of will in relation to a range of necessary behavioural constraints persisting over months or years. Our participants recognised that constantly adhering to the fluid and dietary lifestyle restrictions necessary for dialysis requires immense willpower, over a prolonged period. Extreme thirst and peer pressure can place a great strain upon a minor’s ability to adhere, which together with potentially underdeveloped desires and values can lead to what Scoccia terms ‘low autonomy desires’10 motivating behaviour. Ideally, an autonomous person is able to suppress a firstorder desire in order to fulfil a second-order desire.17 In reality, many of us are weak-willed when it comes to resisting first order desires but, as Hill argues, weakness of will is compatible with autonomy (though absence of will would not be).18 This distinction raises the possibility that weakness of will can frustrate that which is autonomously desired. Likewise, individuals can be overwhelmed by their first-order desires, which may also undermine their autonomy by causing them to sabotage that Mellor JS, et al. J Med Ethics 2015;41:151–156. doi:10.1136/medethics-2013-101659
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Figure 2 Capacity judged in relation to the risks involved. which they actually want; the line of argument apparently used in legal judgement in relation to Re MBi (1997).19 It may, then, be a mistake to assume that a minor (even one who has capacity) who does not adhere to the rigorous recommended behaviour on dialysis is refusing or otherwise withholding consent. To take one example, that of thirst; the drive to quench thirst may place a huge strain upon a minor’s willpower to adhere and failing to resist may demonstrate weakness of will rather indicating that the minor either places no value on his health or doesn’t understand the consequences of his behaviour. Whether or not this weakness is a character flaw—as some of the pejorative statements our participants made might suggest— may depend on how strongly the urges that run counter to adherence are felt as well as how mature the minor is and how determined are his/her parents and what else is reasonably competing for their attention. Recognising the nuances of autonomy in relation to adolescents still leaves open the question of what is the HCPs’ obligation to provide good care in this context. The ethics of care, as described by Tronto,20 recognises the relational basis of healthcare. Within the context of paediatric renal failure, one sees an interdependent triad of relationships between HCP, parent and minor, each of which can flourish or be eroded. The HCP-patient relationship is a central facet of healthcare and therefore needs to be sustained for healthcare to be adequately provided. As Epstein suggests, patients “rely not only on analytic cognitive processing but also on intuitions, feelings and communication with trusted others” and strong HCP-patient “relationships can enhance autonomy by helping patients to process complex decisions that otherwise overwhelm the cognitive capacity of a single individual.”21 Epstein argued that through these relationships a ‘shared mind’ is achieved thus representing relational autonomy whereby decisions take into account the interdependent nature of patients. From these relationships responsibilities arise,14 and responsibility is what Tronto
i
The case of Re MB involved a pregnant woman who needed and originally wanted a caesarean section to save the life of herself and her child. As the procedure was about to be performed, she panicked and withdrew consent because of her needle phobia. The Court of Appeal ruled that at the point she refused consent, she lacked capacity due to her fear and panic, and that the procedure could therefore be carried out.
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attributed as ‘Caring for’20—one of the four elements of care ethics. As this responsibility arises from relationships, HCPs need to define these relationships carefully so as to be accountable for the care they provide to minors, while minors, relative to their development and maturity, should also take some responsibility for their own health. Responsibilities include being able to discern the care needs of the minor (Caring about20), and being competent in providing these care needs (Caregiving20) so that HCPs are able to recognise how best to provide the care as well as being capable of providing it. These shared responsibilities, can be used to justify some of the responses to non-adherence reported by the participants in the context of weakness of will and failure of will. We will take each in turn. Persuasion is different to coercion, though there may be a fine line between the two. Powers notes, for example, that persuasion entails “no willingness to harm, no threat, a positive result, another choice available, and no choice constrained”22 unlike coercion for which much greater justification is therefore required. Coercion can be detrimental as “imposing treatment on young people where they refuse could damage the young person’s current and future relationships with healthcare providers, and undermine trust in the medical profession.”23 Therefore, while providing care, HCPs should continuously monitor the response of the minor (Care receiving20) so that the HCP can adapt the provision of care. To better tailor their care, HCPs will want to discuss different aspects of the care with the minors and their parents, while voicing their own priorities and justifying their responses. This allows each member of the triad to raise his/her concern so that a compromise can be reached that permits the provision of optimal care while enabling the interdependent triad of relationships to flourish. As discussed earlier, minors, particularly younger ones, may be acting from underdeveloped desires and values and this needs to be incorporated into the ‘shared mind’ concept. As minors develop and mature, however, they may begin to take on more responsibility and adopt a more established position within the ‘shared mind.’ Throughout, HCPs’ responsibilities mean that they must be continually mindful of the severity of the consequences of non-adherence; fluid overload from fluid non-adherence, perhaps due to weakness of will, can be life threatening. This scenario still provides a strong indication for dialysis and therefore persuasive or coercive methods may eventually be justified. 155
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Clinical ethics The persuasive methods described by the participants, such as rewards and play tactics are clearly permissible because a minor is still free to resist and because they entail no threat. Participants also describe ‘telling off,’ restraint and hospitalisation as responses to non-adherence, that are clearly motivated by their perception of the minor’s interests (ie, they are not reported as acts of malice or frustration). Of these ‘telling off ’ is perhaps the most surprising but the least worrying in terms of coercion. It is surprising in the sense that it contradicts the requirement to practice in a way that is non-judgemental but its effectiveness presumably trades on this, as an unexpected demonstration of disapproval may reinforce the seriousness of nonadherence. ‘Telling off ’ may also reflect the tendency to adopt a parental role (by becoming a disciplinarian as well as carer). Although these methods are paternalistic (assuming the minor has some autonomy), they are only weakly paternalistic for the minor remains free to disregard attempts to change his/her behaviour. They may, in addition enhance the minor’s autonomy if they help a minor achieve his/her second order desires. Restraint and hospitalisation are highly coercive because the minor has no choice but to adhere as his freedom of movement and ability to resist is restricted. Our results reflect those of Lewis et al24 in that our participants were more uncomfortable restraining more mature minors. It is likely that this reflects increasing respect for the minor’s emerging autonomy and the need to proceed with, what Ross terms, proportionate respect.25 Coercive action needs to be carefully managed and justified in terms of the health benefits and taking into account the potential long-term damage to nurse/patient relationship and bearing in mind the harms caused by the coercion, and will require the consent of a person with parental responsibility. Any justification will also require consideration of the extent to which a minor is actively and autonomously deciding not to adhere. In the case of younger minors, the desire to adhere (or not) is unlikely to be autonomously chosen so coercion per se poses less of an issue, although any harms generated by the means of coercion (eg, restraint) would remain a factor. In the case of older minors, there may be at least some justification for coercion that bolsters or strengthens the will to do what one wants: it is easier to resist temptation when it is removed from sight and reach.
CONCLUSION The issue of coercion in the context of adherence to the lifestyle restrictions necessitated by paediatric renal failure needs to be considered alongside the division of labour between parents and nurses when it comes to safeguarding a minor’s health. Our participants clearly felt that parents, especially those of younger minors, shoulder some of the responsibility for adherence but at the same time, they recognised that the boundaries between responsibilities can become blurred. To some extent the coercion applied to ensure adherence by, for example, hospitalisation, is no different in scale to that applied by some parents in the home, for example, putting locks on taps, toilets and fridges. Moreover, achieving adherence, and the concomitant benefits, is presumably one goal of hospitalisation as a response to non-adherence. In this context, where a significant contribution to the minor’s future prospects depends upon adherence to non-medical intervention-based measures, such as control of drinking and diet, the distinction between parental and professional roles is bound to be fluid. Relational ethics provides another way of reflecting upon how professionals could define
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their obligations in the context of responsibilities that are shared with parents and the minor, especially as the minor gains autonomy. Likewise, it is important to consider that not all nonadherences should be afforded the status of refusals of care or treatment, particularly in the context of adolescence. Correction notice This article has been corrected since it was published Online First. Questions 3 and 4 in Box 1 has been corrected. Contributors The idea for the study originated from S-AH. All the authors contributed to the study design. JSM collected and analysed the data supervised by S-AH and HD. The coding was checked by HD. JSM produced the first draft of the paper and S-AH and HD commented extensively on this and subsequent drafts, including making drafting changes. Funding The University of Birmingham; a small research budget is provided to all BMedSc students. Competing interests None. Ethics approval BMedSc Population Sciences and Humanities Internal Ethics Review Committee at the University of Birmingham, and the Research and Development Department at the Birmingham Children’s Hospital. Provenance and peer review Commissioned; externally peer reviewed.
REFERENCES 1
2 3 4
5
6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25
European Society for Paediatric Nephrology. ESPN/ERA-EDTA Registry—An update on the registry. 2012. http://espn-reg.org/files/ESPN%20ERAEDTA%20AR2010.pdf (accessed 15 Oct 2013). Simoni JM, Asarnow JR, Munford PR, et al. Psychological distress and treatment adherence among children on dialysis. Pediatr Nephrol 1997;11:604–6. Denhaerynck K, Manhaeve D, Dobbels F, et al. Prevalence and consequences of nonadherence to hemodialysis regimens. Am J Crit Care 2007;16:222–35. Williams AF, Manias E, Walker R. Adherence to multiple, prescribed medications in diabetic kidney disease: a qualitative study of consumers’ and health professionals’ perspectives. Int J Nurs Stud 2008;45:1742–56. Wens J, Vermeire E, Royen PV, et al. GPs’ perspectives of type 2 diabetes patients’ adherence to treatment: a qualitative analysis of barriers and solutions. BMC Fam Pract 2005;6:20. Lindsay Waters A. An ethnography of a children’s renal unit: experiences of children and young people with long-term renal illness. J Clin Nurs 2008;17:3103–14. Carton JS, Schweitzer JB. Use of a token economy to increase compliance during hemodialysis. J Appl Behav Anal 1996;29:111–13. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005;15:1277–88. Beauchamp TL, Childress JF. Principles of biomedical ethics. Oxford, New York: Oxford University Press, 2001:57–112. Scoccia D. Paternalism and respect for autonomy. Ethics 1990;100:318–34. Ross LF. Health care decisionmaking by children. Is it in their best interest? Hastings Cent Rep 1997;2:41–5. Buchanan AE, Brock DW. Deciding for others: the ethics of surrogate decision making. USA: Cambridge University Press, 1989:17–86. Eekelaar J. The emergence of children’s rights. OJLS 1986;6:161–82. Herring J. Medical law and ethics. Oxford, UK: Oxford University Press, 2012. Wicclair MR. Patient decision-making, capacity and risk. Bioethics 1991;5:91–104. Gillick V. West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402. Dworkin D. The theory and practice of autonomy. Cambridge, UK: Cambridge University Press, 1988:12–20. Hill T. Autonomy and self –respect. Cambridge, UK: Cambridge University Press, 1991:118–37. Re MB [1997] 2 FCR 541. Tronto JC. An ethic of care. In: Holstein MB, Mitzen PB, eds. Ethics in communitybased elder care. New York, NY: Springer Publishing Company, 2001:60–8. Epstein RM. Whole mind and shared mind in clinical decision-making. Patient Educ Couns 2013;90:200–6. Powers P. Persuasion and coercion: a critical review of the philosophical and empirical approaches. HEC Forum 2007;19:125–43. British Medical Association. Consent, rights and choices in health care for children and young people. London, UK: BMJ Publishing Group, 2001:106–26. Lewis I, Burke C, Voepel-Lewis T, et al. Children who refuse anesthesia or sedation: a survey of anesthesiologists. Paediatr Anaesth 2007;17:1134–42. Ross LF. Children, families and health care decision making. Oxford, UK: Oxford University Press, 1998:39–55.
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Adherence in paediatric renal failure and dialysis: an ethical analysis of nurses' attitudes and reported practice Joe Scott Mellor, Sally-Anne Hulton and Heather Draper J Med Ethics 2015 41: 151-156 originally published online January 10, 2014
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