Jonsen’s Four Topics Approach as a Framework for Clinical Ethics Consultation
This was an in-depth qualitative study that looked at the reasons patients were referred to the Clinical Ethics Committee (CEC) of an acute hospital in Singapore and explore how the CEC approached cases referred. Jonsen’s four topics approach was applied in the deliberative process for all cases. A comprehensive review of the case records of 28 patients referred consecutively to the CEC from 1 January 2012 to 31 December 2014 was conducted. Data and information was collated from the referral forms, patient medical records, and emails communicated among CEC members. A deductive approach to thematic analysis based on Jonsen’s four topics approach was used to analyze the documents. Majority of the patients were male (94%), Chinese (76%), and above 65 years of age (41%). Ethical dilemmas surfaced due to differences in opinion regarding withholding of aggressive management (53%), withdrawing treatment (35%), and ascertaining patient’s autonomy (12%). In most cases, the patients’ preference on end-of-life care was unknown (82%). The main reasons for referral to the CEC were conflicts in clinical management and uncertainty about the decision-making capacity of patients. The CEC members tended to emphasize on “patient preference” more than the other quadrants in the four topics approach as they worked through each case. The Jonsen’s four topics approach lays the groundwork to frame ethical dilemmas that can be easily applied in the clinical setting and is a useful tool for the CEC’s teaching and discussion. Nonetheless, the approach only organizes ethical dilemmas and requires clinicians to apply own judgment in weighing ethical principles. Further studies can look into adapting the four topics approach to suit the local practices and context.
KeywordsJonsen's four topics approach Ethical dilemma Clinical ethics Clinical ethical decision making Document analysis Qualitative research
Clinicians grapple with ethical dilemmas when making choices and decisions while caring for patients could be a challenge and a struggle. The key principles of clinical ethics, i.e., beneficence, non-maleficence, autonomy, and justice, may not be easily applied to a context and ethical decision-making has become more complicated. This is, in part, due to the rapid changes taking place in medicine today. Advances in often complex medical interventions have improved our ability to prolong life, often encompassing side effects that are both intended and unintended. Increasing emphasis on patients’ right to self-determination and ever-spiraling healthcare costs have all contributed to the moral and ethical conundrum that clinicians must confront in their daily work.
While physicians are competent in providing medical care, they are often ill-equipped to handle complex ethical dilemmas in the course of clinical work. In a study (Jansky et al. 2013), 70% of healthcare professionals experienced ethical conflicts at least once a month, while 90% felt that ethical issues were of significant importance. Another interview study of eight clinicians, which assessed six CECs’ deliberations on ten clinical cases, found clinical ethics consultations were worthwhile doing (Førde et al. 2008). Many countries in Europe, the USA, and Australia have introduced Clinical Ethics Committees (CECs) in hospitals to provide ethics consultation services to healthcare professionals and patients (Fox et al. 2007; Whitehead et al. 2009).
While a review of the medical literature yielded papers that made proposals for the functions of CECs, there has been no reported qualitative study on the practice and functions of the CEC using the four topics approach of Jonsen et al. (1982) (Slowther et al. 2001). The four topics approach has shown to be a practical and systematic method for clinicians to work through difficult clinical ethics cases.
This study seeks to increase our understanding of what constitutes an ethical dilemma in an acute hospital and explore how the CEC applied the four topics approach in responding to cases referred to it.
Document analysis was conducted retrospectively on 28 cases that were referred to the CEC of a 590-bed regional acute hospital in Singapore between 2012 and 2014. Data was collected from referral forms made by the primary teams, summaries made by the ethics consultants, patient medical records, secured emails communicated between members of the CEC, and recommendations made by the CEC. A deductive approach to thematic analysis of the documents based on Jonsen’s four topics approach was used to explore the reasons for ethical conflicts, reasons for referrals, and recommendations made by the CEC (Schumann and David 2008). The data collection and data analysis period for this study is from March 2015 to June 2015.
Ethics approval for this study was obtained from Domain Specific Review Board of National Healthcare Group, Singapore (03/03/2015; Protocol 2015/00116).
Ethics Referral and Consultation Process
Under the Private Hospitals and Medical Clinics Act, the hospital ethics committees in Singapore should comprise of at least three in-house practicing healthcare professionals and three external healthcare professionals with at least 10 years of practice experience as well as three laypersons. In this study, the hospital CEC comprised in-house specialist consultants from various disciplines, consultants from other healthcare institutions, nurses, and laypersons such as a lecturer, a medical social worker, a pastor, and a lawyer. The multidisciplinary composition of the CEC is predicated on the premise that ethics deliberations should encompass “the broadest diversity of viewpoints” as far as possible (Gunning and Holm 2005).
The primary team submits a referral form to the secretary of the CEC who informs the ethics consultant on duty. The referral form is structured in a manner that broadly applies the Jonsen’s four topics approach. Within 2 days from the referral, two ethics consultants who work as specialist doctors of the hospital would go to the patient’s bedside to examine the patient and talk to the patient’s families if they are present. Such a practice was instituted in order to supplement details not set out in the referral form. The consultants would then summarize the referred case together using Jonsen’s four topics approach as a framework before forwarding the summary to the other CEC members.
CEC members apply the approach in the discussion and deliberation of the referred case via the hospital’s secured email system and arrive at a consensus. The ethics consultant then finally consolidates the recommendations and forwards them to the primary team. Recommendations of the CEC are purely advisory and hence need not be accepted by the primary team. For very challenging and urgent cases, members of the CEC would meet in person within a week of the referral. In relation to the 28 cases analyzed in this study, a meeting of CEC members was convened for one of these cases. Otherwise, members of the CEC meet four times a year to review and discuss ethics referrals and the recommendations that were provided.
We conducted thematic analysis (Bruan and Clarke 2008) to identify the underlying trends, patterns, and reasons for referral as well as the final recommendations made. The Framework Method (Gale et al. 2013) was carried out on all cases referred to CEC from 1 January 2012 to 31 December 2014. Two researchers independently analyzed and reviewed the referral summaries that were based on the four-topic approach and the email correspondences among the CEC members using the deductive approach. No software was used for the analysis. Codes were subsequently applied and analyzed by all authors to verify discrepancies and to achieve a common consensus on key concepts, themes, and sub-themes. The quadrants of Jonsen’s four topics approach (i.e., medical indications, patient preference, quality of life, and contextual issues) were used as the main themes together with “reason for referral” and “recommendations proposed by the CEC,” and sub-themes that emerged were built upon these main themes.
As in all document analyses, the study analysis is based on documented summaries and email correspondences, and is subjected to missing information that would affect validity of the study findings. The generalizability of the findings is limited to a CEC of one hospital in Singapore that has an average of nine referrals per year.
Characteristics of patients referred to the Clinical Ethics Committee
N = 28
Mean years ± SD
61 ± 21
No mental capacity
Uncommunicative and bedbound
Withholding aggressive management or treatment was recommended by the CEC in 40% of the referrals and the reasons for recommendation were medical futility (71%) and risks/burden of treatment outweighing the benefits (100%). The recommendation made for the other 60% was to proceed with the treatment. The reasons were perceived reversibility of the acute condition (67%) and respecting family wishes (33%). Continued communication with family members was recommended in 76% of referrals. The qualitative findings of the study are presented in the following sections.
Reason for Referral
Conflicting Views between Primary Team and Family Members
A common reason for ethics consultation was related to conflict between the primary care team and the patient’s family regarding aggressive treatment, which was deemed futile by the former. Most of the patients involved were severely ill, were likely to pass away from complications, and no longer had decision-making capacity. The primary team and the patient’s family were deeply divided over what treatment was in the patient’s best interest. The family tended to hold onto their stand of wanting “everything done” for their loved one, to keep him or her alive, with the hope that a miracle will ultimately arise.
Conflicting Views among Family Members
Although in most cases, there would be a designated spokesperson who acted as the “voice” for incompetent patients, oftentimes, other family members would complicate the decision-making process. The referring primary team reported tension and confusion as the family members were unable to decide on the patient’s care even as death approached. Family members were struggling with the conflict between holding out hope for the patient’s recovery and “letting go.” In some cases, a family member was reluctant to discuss life-sustaining treatment being withdrawn for fear of offending the other family members.
Making Decisions for Mentally Incapacitated Patient
Mr A has repeatedly pulled out his nasogastric tube despite the use of restraints to prevent him from doing so. He requires nasogastric tube feeding because of severe dysphagia as a result of a recent stroke. The risk of aspiration will be extremely high with oral feeding … The medical team is concerned that the patient is 'starving to death' and is wondering if they can forcibly insert a nasogastric tube to provide nutrition.
Validity of a Patient’s Surrogate
In several cases, the family member who had been estranged from the patient for many years reappeared and attempted to take over the decision-making process for the dying and mentally incapacitated patient, demanding overly aggressive treatment. The primary team struggled when deciding whether to accede to these requests especially when the ability of such family members to make decisions was in question.
This quadrant applies the principles of beneficence and non-maleficence and is the first step to case analysis in the Jonsen’s four topics approach. It helps clinicians to frame available treatment options and examine how each option benefits the patient.
Difficulty in Prognosticating
Mr A was admitted for pneumonia with Acute Respiratory Distress Syndrome (a life threatening reaction to the infection of the lung, often resulting in inflammation, hypoxia and multiple organ failure). His condition later deteriorated, necessitating transfer to the ICU and mechanical ventilation. His stay in the ICU was complicated by renal failure and several episodes of cardiopulmonary collapse. He now has a tracheostomy due to prolonged intubation, and is on nasogastric tube feeding.
Uncertainty of Providing Potentially Life-Saving Interventions
In other referrals, surgical procedures were proposed for potentially reversible conditions whereby the patient could possibly recover and regain some of his or her premorbid status. However, these procedures may subject the patient to the risk of developing further burdensome complications and unnecessary pain and suffering. The difficulty was in weighing the risk-benefit ratio of a proposed intervention and reversibility of an acute medical condition.
This quadrant of the Jonsen’s four topics approach applies the ethical principle of autonomy and looks into previously expressed or presumed beliefs and preferences of the patient.
Unknown Preference in an Incompetent Patient
In cases where there was no prior knowledge of the incompetent patient’s values and wishes, the consulting physicians adopted a default position that generally favored aggressive treatment, that is to “err on the side of life.”
Family Using their Own Values rather than Those of the Patient
When decisions of the family were at odds with that of the individual patient, it was usually the former that took precedence. Some families insisted that the family’s needs take priority over the patient’s interests. For incompetent patients with no advance directives, the requests made by family for postponement of the patient’s death at any cost raised ethical questions about whether this truly represented the patient’s wishes. The primary team was not certain if wishes expressed were motivated by the family’s own interests, values, or emotions. In addition, the primary team was doubtful if the family understood the implications of requesting burdensome life-prolonging interventions for the patient.
Deferment of the Right to Self-Determination to the Family
When I broached this latter issue again, he refused to talk, saying that all decisions will be made by his wife and he would ‘defer’ to her decisions as a surrogate decision maker. He claimed that his wife knew him well and he trusted her.
Uncertainty about Going against an Incompetent Patient’s Wishes
In the case of Mr B, he was assessed to lack decision-making capacity. He did not want dialysis, although he knew he would die without it. The ethical dilemma arose as to whether the patient’s wish should be ignored (as he did not have decision-making capacity) or respected even though he lacked decision-making capacity.
Mr B has been refusing dialysis since his admission ... He has been seen by the psychiatrist several times and has been assessed to have no decisional capacity. Based on the psychiatrist's report, Mr B was unable to say what dialysis is and why it is necessary. "I do not know what dialysis is. You should ask them (the primary team) why I am doing dialysis. I don't know." When asked to give a reason for refusing dialysis he said "I don't want dialysis because I prefer to die." When asked if he knew what would happen if he didn't have dialysis, he replied, "I will die".
Quality of Life
This quadrant analyses a treatment’s appropriateness in affecting a patient’s quality of life (QOL) and the definition of QOL as perceived by the primary team.
Dependent on Others for Physical Needs
Referrals made to the CEC often reported that the patients had poor and declining cognitive and/or physical function. They were bedbound and frequently in a state of permanent or near-permanent dependence on others for care. The patients also had declining ability to communicate and hence were unable to interact with those around them as part of normal human relationships. QOL was assessed to be poor in such patients. However, it is important to note that such value judgments may reflect the views of the primary team or family members rather than that of the patient.
Low Chances of Meaningful Recovery
Patients referred to the CEC were described by the referring physician as having poor QOL with a slim chance of making any meaningful recovery from their existing state. Oftentimes, the discussions on QOL revolved around whether the patient would end up in a permanent vegetative state, where the burden of care on families would be overwhelming and institutionalized care would be the only recourse.
This quadrant explores broader issues that are not covered in the other three quadrants of the four topics approach. It takes into consideration factors such as economic (i.e., caregiver burden as a result of high medical expenses), religious and cultural (i.e., family’s religion and hope for miracle), confidentiality issues (i.e., collusion), and the impact of these factors on decision-making.
The family members want withdrawal of ventilatory support, to allow the patient to pass away peacefully. They feel that further ventilatory support will not help the patient recover ... They are also worried about the costs of treatment in the ICU and the fact that they would not be able to care for the patient later, should she be incapacitated.
Family’s Reluctance to Accept Prognosis
They are Roman Catholics and do not question their predicament. The patient's father is hopeful that God will work a miracle for him, but he is also accepting of his son passing away eventually. He was noted to trust in God's plans.
Families requested for information to be concealed from other family members, with the intent of sparing the latter further distress and anguish. An example was that the family member had asked the primary team not to communicate the prognosis of the patient’s illness to another family member fearing that the latter’s health may deteriorate after hearing the bad news. Collusion also made discussing life and death matters and advance care planning with patients extremely difficult.
Deferment of the Decision-making Responsibility to the Primary Team
End-of-life decisions were often not discussed when decision-making capacity was present. These decisions were left to the doctor to make at a late stage when the patient had lost decision-making ability. This was challenging for the doctors, especially when family members were coping with guilt and anticipatory grief and were unwilling to accept imminent death.
Recommendations Proposed by the CEC
The application of the four topics approach has identified important gaps in the clinicians’ knowledge in addressing ethically challenging cases, especially in the realm of medication indications (weighing risks and benefits of a treatment) and patient preferences (weighing the patient’s preferences versus family’s needs). The following sub-themes show the CEC’s recommendations that highlighted these gaps.
Withdrawing Treatment and Irreversibility of Condition
Commence withdrawal of treatment in a phased manner … It is important to inform her [patient’s] family that their opinions matter and that this decision to withdraw treatment has been made following much deliberation and contemplation. Establishing deadlines for treatment withdrawal may be helpful in allowing her family time to grieve and prepare themselves emotionally for her eventual demise.
Time-Limited Trial of Treatment
The CEC proposed to proceed with time-limited trials of intensive care with clearly defined end-points or outcome measures that sought to help decide if an intervention should be discontinued or completed (Quill and Holloway 2011). Compliance to treatment was one of the indicators used to decide if treatment should be continued.
Accepting the Inevitability of Death
Once again we need to remember that death is not the enemy. It fact, it may be the final healing. It is so important to recognise and understand that the patient is at the end of life. We need to help the family make the best use of this precious time.
Being the Patient’s Advocate and Acting in his Best Interests
In many cases, the CEC recommended that the primary team play the role of an advocate for the weak and vulnerable patients, especially for those who lost decision-making capacity and have no next-of-kin. Duty of care is owed to patient first and foremost. This takes precedence over the interests of the family.
Empathetic and Compassionate Communication
Explore and understand Mdm D’s sisters’ perspective. Are they aware of Mdm D’s current condition, prognosis, the burden and suffering she is undergoing? Have they lost trust in the doctors and the hospital? Are they harbouring a lot of guilt and [therefore] want to ‘do everything’ for Mdm D?
Accommodating Grief and Providing Counseling
The biggest problem is how to help the family come to terms with the reality that aggressive and futile medical treatment serves only to prolong the dying process ... The challenge is walking with the family through this very difficult time in a spirit of compassion and earning their trust. This is unfortunately no easy task as it requires much patience and empathy.
Facilitating Family Consensus
In communicating with the family, the aim is to achieve a common goal which would be for the good of the patient. To reach the shared goal, the primary team had to listen and respond to the family while acknowledging and addressing their emotions. It was important to establish in detail the patient’s status and, where necessary, introduce palliative care early. Fear and guilt, if not addressed early, could lead to complicated and time-consuming conversations later. The primary team was encouraged to be sensitive to the needs of the patient and her/his family. The former must be prepared to take time and make an effort to build rapport with the family and forge a relationship that is based on respect and trust.
Respecting Autonomy and Dignity
The CEC recommends that advance care planning discussions be carried out as planned to clarify and understand Mr E's wishes with regard to end-of-life care. This should be carried out in the presence of his wife, in accordance to his wish. The usual advance care planning documentation process should be adhered to so that all current and future caregivers will be aware of his wishes and decisions.
The four topics approach was presented by Albert R. Jonsen to help clinicians, especially those in the CEC, to appreciate evaluation of several ethical principles in an ethical dilemma in the hospital setting. The specific questions presented in each quadrant addressed key principles of clinical ethics and helped the CEC in this study to apply these principles to ethically challenging cases.
In our study, the quadrant on “medical indications” involves complex medical conditions at the end of life. Clinicians found it hard to prognosticate or propose treatment options as the risk/benefit ratio was not evident. Clinicians have to decide at what point the burden of care would surpass its benefits. As the extent of harm or benefit was perceived differently by different individuals, the CEC depended on the analysis of the other three quadrants to be able to provide a recommendation.
The themes are intended to be equal in weightage and none takes priority over the others but in this study, there is a tendency to prioritize patient preference. The quadrant on “patient preference” is stressed upon by the CEC in all the referred cases. In cases where the patient with fluctuating or unknown cognition refused recommended life-saving treatment, the primary team would often question the mental capacity of the patient and refer the latter for further assessment. Despite the patient being assessed to be incompetent, the CEC’s decision tended to give more credence to the patient’s decision. The focus appears to be on empowering the patient to exercise their right to self-determination down to the last period of their life. When the patient was assessed to be competent, the primary team seemed to have difficulty accepting refusal by a patient of life-saving treatment. In such circumstances, clinicians raised questions that included those in the “patient preference” quadrant, such as: “Has the patient been told enough information on their care options? Is the patient fully aware of their condition?”
Making decisions for mentally incapacitated patients will become more prevalent with a rapidly aging population and increased incidence of dementia (Alzheimer’s Disease Association 2017). The Mental Capacity Act (Singapore Statutes 2018) and Advance Care Planning (About Living Matters 2015) are measures that have been put in place to address this. Under the Mental Capacity Act (MCA), proxies of incompetent patients are not to make decisions on behalf of these patients in life-threatening situations. This contradicts and puts into question the role of the patient’s surrogate decision-maker. As a matter of good practice and under the MCA, the family’s views should be considered as part of the best interests decision-making process. More importantly, efforts should be directed to allow the family to address their emotional struggles before and after making known the best interests decision. The primary team could approach each ethical dilemma by first making clear about who has the legal authority to decide, for whom, and in what circumstances.
Despite definitions that attempted to use objective parameters, QOL is viewed as subjective and individualized; it would be tenuous for the primary team to make judgment on another person’s QOL. Hence, an approach adopted is to propose a time-limited trial of a certain intervention. An example would be NGT insertion and how it impacts on the patient’s QOL (Gillick 2000). The CEC advised time-limited trials of NGT insertion where repeated re-insertion of the NGT would be assumed to adversely impact the patient’s QOL and thus should be withdrawn.
What is QOL? Is a smile or eye contact good enough? One can argue too that the nursing home is a terrible place to be in, that losing one's mind would be terrible and to be saddled by so many illnesses… that life may not be worth living (from the eyes of someone who is fully functional, physically and intellectually) …
In the quadrant on “contextual features,” major challenges were found in dealing with the family members’ unrealistic hope that often arose due to the family’s religious background. Asymmetric information exchange between medical professionals and caregivers was proposed to contribute to the conflicts (Seccareccia et al. 2015). The CEC’s recommended course of action was for the primary team to communicate empathetically with the family. However, clinicians are often ill-equipped in recognizing and responding to informational and emotional needs (Marcus and Mott 2014). Generalized guidelines would never be good enough to walk patients and families through this sensitive and emotionally challenging process. The CEC also emphasized that the concept of medical futility (Wilkinson and Savulescu 2011) needed to be communicated carefully in a way that did not denote a sense of abandonment. Acknowledging and discussing fears fosters hope (Woelk 2008). Willingness to spend time with families and to discuss their doubts and struggles will help them to envision a new collective vision of hope, to better cope with the life-threatening illnesses.
The Jonsen’s four topics approach is a useful organizing tool to support the CEC’s practice which comprises of: response to all referrals for an opinion and the response includes an analysis of the ethical issues, points of education for the referring teams, suggestions on how to reach a resolution, and reminders to appreciate the patient’s and family’s perspectives. The CEC provided a multidisciplinary forum where clinicians could submit ethical queries of particular cases and receive support in their decision-making. The CEC also sought to resolve conflicts by helping clinicians appreciate the knowledge deficit and unanticipated consequences of their arguments, values, and beliefs. The results of this study inadvertently demonstrated that clinicians often adopted a paternalistic attitude when dealing with the rights and well-being of patients. Although working toward a consensus can be difficult, clinicians, patients, and families should advocate for the patient’s best interests. A mutually agreed plan of care could then be formulated.
Resolving ethical dilemmas is an art and skill that hinges on the doctor’s understanding of ethical principles, training and experience, religious beliefs, and moral principles. The four topics approach provides a relevant, case-based way to work through ethical dilemmas. However, it can be rigid and restrictive when analyzing cases. Clinicians need to exercise their own judgment by possibly placing more emphasis on one quadrant than the others, on a case-by-case basis. The “QOL” quadrant may not add value to the overall analysis if clinicians continue to hold negative perceptions of a patient’s QOL at the end of life, and these perceptions can vary from that of the patient’s. The “contextual features” quadrant may be too broad and dividing it into smaller sub-sections such as psychosocial and legal issues can be explored in future studies. For example, a fifth box on “the Catholic context” was introduced to incorporate principles of Catholic social teaching in a recent study (Marugg et al. 2014). Hence, further research can also look into adapting the four topics approach to suit local practices and context.
The healthcare landscape is becoming more complex. Clinicians must tread carefully on a minefield of ethical dilemmas that impact profoundly on the treatment of patients. The CEC is essential in formalizing an operational structure to help resolve ethical conflicts in the clinical setting and to optimize patient care. Our findings could inform healthcare practitioners and conceptualize healthcare ethics in a manner that helps to address complex ethical issues encountered in hospital practice.
The Jonsen’s four topics approach lays the groundwork to frame ethical dilemmas in a way that can be easily applied in a clinical setting. The approach also serves as a tool for the CEC’s consultative and educational roles. Each of the four themes considers specific, concrete form from the circumstances of the particular case. Nonetheless, the approach only categorizes ethical dilemmas into four segments and clinicians need to apply their own judgment in weighing ethical principles. Further studies can look into adapting the four topics approach to suit local practices and context.
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