Ethical dilemmas are a common occurrence in social workers’ practice. The involvement of numerous stakeholders with different interests, values and goals often creates situations that demand resolution of complex decision-making processes. The current paper examines the case of Fern, a 17-year-old Chinese girl with developmental delays and a complicated health condition who requires the services of professional clinicians in order to ensure an adequate level of welfare.
Since Fern cannot make decisions, her parents have decided to terminate hospitalisation and take Fern home for cultural reasons. In order to resolve the emerging dilemma, it is necessary to identify the involved stakeholders, model two possible courses of events, evaluate the implications of each and come to a conclusion regarding the preferential option using an ethical decision-making framework.
Ethical Dilemma
A situation can be considered an ethical dilemma when several possible solutions to the problem are valid and relevant but mutually exclusive, with no evident advantage to any of them (Weber & Pockett 2011). In this case, Fern, who is both non-verbal and suffering from Proteus syndrome (a rare condition of tissue overgrowth) requires constant and exhaustive medical care that is difficult to provide at home. Her previous developmental and family history indicates benefits received from hospitalisation as well as some evidence of difficulties experienced by the parents in their attempts to provide adequate care at home.
A recent review of the child’s condition identified an increasing need for hospitalisation. However, during a conference organised to update the care plan, the parents expressed a reluctance to comply with the scenario recommended by the medical experts and stated their intention to take their daughter home, citing cultural reasons. Since Fern is unable to make decisions due to developmental delays, there is an apparent conflict of interest that clearly involves her well-being and presents no obvious solution.
Questions Raised
Both suggested courses of action pose several potentially hazardous outcomes for Fern. In hospital, the girl would receive a superior level of care that is either difficult or impossible to deliver in the home setting. In addition, the financial and socioeconomic condition of Fern’s family creates additional challenges, such as an inadequate and restrictive environment. However, this decision would also go against the desires of her parents, a serious violation in both legal and medical terms. In addition, continued hospitalisation may disrupt the girl’s cultural environment, which may have an adverse effect on her overall well-being. On the other hand, allowing her parents to take their daughter home is plausible, considering their right to make decisions for their child, but this course creates numerous health risks.
It is also worth acknowledging that besides Fern, other players may be affected by the decision. Most evidently, it will impact her family. In addition, the cultural environment may be compromised.
The situation is further complicated by the fact that legal support in favour of each possible outcome can be found in numerous laws and regulations, including the UN Convention on the Rights of the Child, family law, and the AASW code of ethics.
Affected Individuals, Groups and Organisations
The complete list of the possibly affected parties is as follows:
- Fern. As explained above, she may experience health and cultural risks depending on the decision.
- Fern’s family. One of the possible alternatives compromises their rights and threatens their cultural integrity.
- Involved care providers (e.g. hospital staff). These may experience indirect negative effects depending on the aftermath of the event.
- Social worker. As a person responsible for the right decision, a social worker will be held accountable once the adverse effects become apparent.
Ethical Decision
Human Rights Law
As mentioned above, numerous laws and regulations can be identified as relevant for the decision at hand. From a human rights perspective, two documents can be identified as directly related to the ethical side of the question. First, according to Article 3 of the Convention on the Rights of the Child, any action undertaken by external parties that concerns children should aim at “the best interests of the child” (United Nations 1990).
Naturally, it thus becomes necessary to define what is considered “best” in Fern’s situation. According to Article 23, the criteria for a decent life include dignity, the possibility of self-reliance and an opportunity for active participation in the community (United Nations 1990). These criteria align with the cultural and social implications. At the same time, Article 24 states the necessity to recognise the right of the child for the “highest attainable standard of health” and demands from States Parties to ensure that this right is maintained at all times (United Nations 1990).
For the reasons mentioned above, this standard of health is clearly unattainable through the involvement of Fern’s parents alone and requires intervention by an external party. However, Article 18 of the same document prioritises the parents’ responsibility for the child’s development, thus granting them significant influence in the decision-making process. This is especially relevant in the case of Fern, whose developmental delays impair her capacity for decision-making (United Nations 1990).
Section 8 of Victoria’s Charter of Human Rights and Responsibilities Act 2006 further emphasises the possibility of human beings to enjoy their rights (AustLII 2014). Furthermore, section 14 clarifies that people can make decisions based on their beliefs, and section 15 emphasises the right to freedom of expression regardless of the possible reactions of peers (AustLII 2014). Finally, section 19 of the Act guarantees the right to enjoy culture regardless of the cultural and religious beliefs held (AustLII 2014). As can be seen, both documents addressing human rights contain statements in favour of the intentions stated by Fern’s parents, while only one of the highlighted points explicitly and unambiguously refers to the need for decent healthcare as implied by the alternative course of action.
Legislation
The local laws contain clear definitions relevant to the case. Most importantly, section 3 of the Children, Youth and Family Act (2005) unambiguously defines parents as the father and mother of the child (Victoria State Government 2017). In addition, subdivision E of division 6 further clarifies the age of the individual in question, identifying it as a person who is under 18 (Victoria State Government 2017). Therefore, referring to the involved stakeholders as “child” (since Fern is 17) and “parents” is appropriate from a legal standpoint.
Next, it would be necessary to eliminate misinterpretation of the parental responsibility codified by Article 18 of the Convention on the Rights of the Child, cited above. According to section 61B of the Commonwealth Family Law Act 1975, parental responsibility is any duty, power or responsibility imposed on parents by law in relation to their children (AustLII 2016). At the same time, section 61C of the same document firmly establishes the range of responsibilities as those between parents and children under 18 years of age (AustLII 2016).
From the perspective of a social worker, I would emphasise this point to clarify possible misinterpretation of the term “responsibility” as the ability to determine the outcome of the dilemma without proper acknowledgement of the possible health consequences for the child. This point can be further solidified using the definition of major long-term effects from the same section, which specifically mentions care and health as areas of proper development and welfare (AustLII 2016). Finally, according to section 60 CC, the criteria for determining a child’s best interests include physical harm resulting from neglect (AustLII 2016).
Since this definition coincides with the possibility of harm caused by the decision to withdraw Fern from the hospital, I would emphasise these points to ensure that the parents understand them as part of their responsibility.
Social Work Principles
The AASW Code of Ethics provides several guidelines that should be considered in the process of finding an acceptable solution. On the one hand, section 3.1 prioritises respect for persons provided through humane service and avoidance of harming anyone (AASW 2010). These criteria can be interpreted both in favour of the parents’ and care providers’ positions. On the other hand, section 4 specifically warns against the possibility of conflict between the values and principles suggested by the code and legal and organisational requirements, unambiguously stating that in such situations, the social worker must act “in accordance with the law and with organisational directives” (AASW 2010).
It is thus necessary to define the areas of the Code that potentially conflict with the interests of the stakeholders involved in the case. Section 5.1.2 (b) of the Code lists culture, world views, values and desires among the areas that fall within the range of responsibilities necessary for ethical practice (AASW 2010). Additionally, section 5.1.7 prioritises clients’ interests in the case of conflicting interests, although “due consideration for the respective interests of others” is advised (AASW 2010).
This situation is further elaborated in section 5.2.1 (b), which acknowledges the possibility of an exceptional situation where legal requirements and conditions or interests of other parties may outweigh the clients’ interests (AASW 2010). Finally, in a scenario where clients have limited decision-making capacity, a social worker is to safeguard their interests (AASW 2010).
In this particular case, it will be necessary for me to ensure that Fern’s parents understand the consequences of their decision to withdraw her from the hospital and to achieve the best outcome for their child. I would also need to minimise the barrier to her self-determination posed by her disability and possibly her parents’ cultural background, as required by section 5.2.2 of the Code (AASW 2010). Finally, challenging procedures that are not in the best interests of clients also falls within the responsibilities of social workers, as stated in section 5.4.2 (AASW 2010).
Ethical Theories
Depending on the preferred ethical theory, the social worker could handle the procedure in different ways, reaching different conclusions.
According to deontological theory, human decisions are based on unconditional universal directives known as categorical imperatives (McAuliffe 2014). In this particular case, it is possible to imagine that I as a social worker would hold a firm belief that Fern’s parents have the ultimate right to bring her up at home regardless of possible risks, in which case I would support the parents’ decision. Alternatively, I could hold the belief that a child’s health is an ultimate value, which would also eliminate all doubts. Regardless of the preferred imperative, the deontological approach would make the choice more straightforward but less justified by the context of the case.
The utilitarian approach offers both a more flexible and a more encompassing view of the issue. According to its best-recognised definition, it aims at providing the greatest good for the greatest number (McAuliffe 2014). In our case, this could be interpreted as an attempt to acknowledge the interests of as many stakeholders as possible. However, both the legislative and the ethical implications detailed above clearly do not allow this possibility.
In other words, regardless of the interests of the clinicians, Fern’s well-being will remain my only priority. However, the utilitarian approach would allow me to determine the course of action that offers the greatest capacity to ensure the said well-being by considering the likely consequences of each alternative. For instance, while the parents’ decision to withdraw her from the hospital and take her home may not provide the necessary level of well-being, it aligns well with many provisions ensuring cultural integrity. In this case, it would be necessary to outline and weigh the possible outcomes and thus select an alternative associated with fewer undesirable consequences.
The utilitarian approach also opens up the possibility to detect mitigation of adverse effects generated by the decision. For example, if the cultural damage resulting from hospital care is considered significant, it would be rational to consider the opportunity of arranging a home-care program to mitigate the effect. As can be seen from the information above, the utilitarian approach offers a more comprehensive and inclusive view of the problem and minimises the possibility of adverse effects by acknowledging as many external factors as possible. Understandably, it also requires more time and effort, although the responsibility placed on me as a social worker justifies this difference.
Hospital Policies
The professional boundaries of the Royal Children’s Hospital acknowledge the possibility that the delivery of care might involve the need to understand the cultural background of the patient (or, due to Fern’s inability to make decisions, that of her parents). Besides, patients’ rights include the possibility to refuse treatment and receive a proper explanation of the possible consequences of such a decision (Royal Children’s Hospital n.d.). However, the focal point of the policy is to provide the best possible care to the patient, which cannot be interpreted solely from the perspective of cultural expectations. In Fern’s case, it is also important to factor in her deteriorating physical condition and the suitability of the environment (in contrast to the conditions in her home).
The Australian Charter of Healthcare Rights offers a similar approach by guaranteeing the possibility of service that respects the recipient’s culture and emphasises the right for inclusion in decisions of both the patients and their parents, with the latter having greater significance, considering Fern’s inability to express herself and make decisions (Royal Children’s Hospital 2013). Thus, the policies of both organisations provide the possibility for the girl’s parents to refuse hospital care and take their daughter home – under the condition that this decision could be considered the best possible option. Therefore, as a hospital social worker, I would need to provide them with the best evidence of the benefits of hospital care and help them evaluate the possible shortcomings of their preferred variant.
Viable Courses of Action
Return Home
Since Fern is unable to express herself and decide on the preferred course of action, her parents would be chiefly responsible for the outcome. One of the most evident options is to support the parents’ decision to take Fern home and allow them to take care of her themselves. This option has several advantages. First, the parents in this case essentially represent the client’s interests, and thus, their opinion is to be reckoned with.
In addition, the claimed cultural justification of the decision may be crucial for Fern’s well-being, both to maintain her rights and to ensure the desired cultural and social environment. On the other hand, several risks are associated with this option. First, the home setting severely limits the quality and immediacy of care as no professional medical professionals could provide constant monitoring of her condition.
Besides, as was stated in the case, the house has several physical limitations, such as narrow passages, which would significantly complicate matters. Next, it would be reasonable to assume that new responsibilities would put additional pressure on Fern’s parents and further disrupt their socioeconomic condition. There is evidence that their previous attempts were associated with serious physical strain, and it is likely that such strain will increase as Fern’s condition progresses. Finally, the case makes it clear that the girl’s state improved dramatically after she was hospitalised in the past. In other words, the introduction of professional caregivers yielded observable positive results. Again, Fern’s deteriorating condition suggests that the difference will be even more dramatic in the current situation, with her increased need for specialised medical care.
Stay in Hospital
The second possible course of action is to recommend Fern stay in hospital despite her parents’ stated intention. This option has several notable advantages. First, it would provide Fern with 24-hour access to professional medical care. Her health condition would be appropriately monitored, and necessary measures would be taken in the case undesirable developments are detected. Additionally, a hospital is a more logistically suitable environment for Fern considering her current inability to move freely.
In other words, it will ensure that the client’s best interests are preserved (unless her parents present convincing arguments to the contrary), which is consistent with Fern’s rights as a human being, the Commonwealth Family Law Act that prioritises the role of the child’s health and the policies of the hospital that emphasise the delivery of the best care to the patient. Finally, this decision is consistent with the AASW Code of Ethics, which requires safeguarding the client’s rights and interests.
The greatest disadvantage is the inability to satisfy the cultural expectations of the parents, which may potentially undermine the girl’s well-being (although no convincing evidence exists in favour of this assumption). In addition, the possibility remains that the cultural background of which Fern will be deprived could play an important part in her development as an individual.
Potential Conflicts
I can foresee minor difficulties arising from a conflict between my personal values and the legal and ethical considerations described above. While I certainly respect the human right to enjoy culture, I believe that in a situation where health risks are apparent, cultural considerations are to be carefully weighed before bringing them up in the decision-making process. Besides, in my opinion, the evidence presented in the case suggests that the overall well-being of Fern is more likely attainable through the availability of care provided by hospital professionals. Thus, to me, it is not immediately obvious what value her parents’ values might have for her in her current state.
This outlook comes in conflict not only with her family’s expectations but also with numerous parts of the human rights documents identified in the previous section that emphasise the necessity to recognise cultural background as well as hospital policies that allow refusing care. Finally, it is possible that in this situation, hospital management will be concerned with the possible consequences of not acknowledging the cultural background of the patient’s family, which would present additional difficulties.
Conclusion
Considering the information above, I find the second alternative – allowing Fern to stay in hospital – the more viable option. I consider it to be difficult to achieve since Fern cannot express herself, which means that her parents’ decision would take priority. Nevertheless, I would point to the fact that health is an essential component of the child’s well-being and explain the restrictions and difficulties that would surface after Fern is taken home. In other words, their decision to withdraw her from the hospital would not be in the best interests of Fern, which would be inconsistent with section 60 CC of the Family Law Act, Article 3 of the Convention on the Rights of the Child and sections 5.1.2 and 5.1.7 of the AASW Code of Ethics.
In addition, I would be required to refer the case to the child protection service as demanded by section 4 of the Code. Finally, I could try arranging scheduled meetings with her family to avoid disrupting cultural integrity. This decision is also consistent with the utilitarian ethical theory since it acknowledges the net effect of the factors at hand instead of capitalising on non-conditional values. Overall, I consider the described course of action ethically appropriate.
Reference List
AASW 2010, Code of ethics. Web.
AustLII 2014, Charter of human rights and responsibilities act 2006. Web.
AustLII 2016, Family law act 1975. Web.
McAuliffe, D 2014, Interprofessional ethics: collaboration in the social, health and human services, Cambridge University Press, Cambridge.
Royal Children’s Hospital 2013, The Australian charter of healthcare rights. Web.
Royal Children’s Hospital n.d., Patient rights responsibilities. Web.
United Nations 1990, Convention on the rights of the child. Web.
Victoria State Government 2017, Children, youth and families act 2005. Web.
Weber, Z & Pockett, R 2011, ‘Professional values and ethical practice’, in A O’Hara & R Pockett (eds.), Skills for human service practice: working with individuals, groups and communities, Oxford University Press, Oxford, pp. 20-42.