The sixth annual CENTRES conference on clinical ethics was held on January 21 and 22, 2016. This year’s event was fully subscribed at 160 attendees, reflecting the growth of CENTRES and the strong local interest in clinical ethics among practitioners. The conference focused on case-based roundtable discussion; 8 cases in total, all referred from local CECs, were used. Roundtable discussions are especially useful at fleshing out the intricacies of a given dilemma, and building capacity among attendees in carefully analyzing and weighing the considerations in each case. As with the pre-conference report, below I’ll provide a gloss on the content from each session.
Part 1: End of Life
Dr. Huxtable’s introduction
Dr. Richard Huxtable (Bristol) kicked off the conference with a talk on how to responsibly engage with dilemmas at the end of life. He observed that many concerns surrounding end of life care and questions of whether to withdraw treatment revolve around well-being – but well-being is a fraught and complex topic that defies easy definition and classification. CECs are needed to help resolve these complexities, at least in regards particular cases, but there is always a danger of losing the plot in deliberations. The ‘ABC’ toolkit was previously developed to give CECs a clear, procedural guide on how to assess cases; Dr Huxtable recommended supplementing that approach with DEF: decide, evaluate and follow-up. His point is that the CEC not only need to make a recommendation, but also look back at cases to determine whether their advice had a positive impact, and get feedback on how to improve procedures.
End of life case 1: Terminal Discharge
The case: a patient is nearing death and has exhausted treatment options. The family asks for the patient to be discharged home to die, observing the practices of their religious tradition. While such discharges are not uncommon, the medical social worker noted that the family was not financially stable and may not be able to provide adequate supervision and care.
Attendees were concerned to ensure that the patient’s interests were really in line with the family’s; was the patient also a devout follower of the same traditions? The family’s exact situation would also have to be explored by the CEC – whether a family member could take time off to care for the patient in their last days. And palliation would be the paramount medical concern for the patient, so a home visit may be needed to determine whether such care could be reasonably provided, or what forms of assistance from professionals may be needed.
End of life case 2: Family Disagreement
The case: A woman has a cardiorespiratory collapse and falls into a coma; while not brain dead, the prognosis is very poor. Her husband and children wish life support to be withdrawn, but her siblings wish to maintain active treatment.
Attendees noted that, while the patient’s prognosis was poor, a decision need not be rushed – further discussion with all family members could help bring the situation to a satisfactory resolution. Those conversations could also help establish the patient’s own preferences – whether she had indicated her wishes prior to falling into the coma. Ultimately, a clinician must make a decision in the case, and that decision needs to be made with a fuller understanding of the family’s dynamics and the source of the disagreement over withdrawal.
Stand-alone Talk: Patient Engagement
Dr. Angela Ballantyne (Otago) gave a stand-alone talk on her work in studying patient involvement in CEC referrals. Her investigation found that in New Zealand, such patient involvement was rare. But Ballantyne argued that patients and/or their families should be involved – informed of the referral, given the opportunity to speak to the CEC, given a copy of the report and given the opportunity to seek clarifications from the CEC concerning the report. This was grounded in norms of publicity; given that CECs have soft power to affect patients’ outcomes, patients should be able to transparently engage in the process. Patient involvement was therefore a form of respecting the patient’s voice and ensuring that recommendations are not insensitive to their interests and needs.
Part II: Mental Capacity
Dr. Chin’s introduction
The primer for mental capacity was given by Dr. Chin Jing Jih (Tan Tock Seng Hospital). Dr. Chin highlighted an important distinction – while a patient with mental capacity would have the right to refuse treatment, they do not necessarily have the right to demand treatment that is not medically indicated; therefore, mental capacity assessments are made to determine whether patients possess a negative right (that of refusal), not a positive one. Dr. Chin also observed that mental capacity is task-specific; one may possess capacity to make one sort of decision (e.g., what to eat for breakfast) but not another (e.g., whether to refuse a particular treatment). And in the case of those who lack mental capacity, the ‘best interests’ standard kicks in – but as noted previously by Dr. Huxtable, making such evaluations is a difficult task and one that requires clear operational standards.
Mental capacity case 1: Dialysis refusal
The case: A patient is diagnosed with advanced kidney disease; reluctantly, he undergoes dialysis. Three years later, he presents with an infection that also interferes with brain function; he declines some medications and now refuses to undergo dialysis, saying he prefers to die. He is assessed to lack decisional capacity concerning medical care and his son wishes to continue dialysis.
Notably, the decision is not up to the son – it is up to the clinician. Attendees were concerned about the family situation; from the more detailed case description, it was not clear that anyone in the family was actually willing to look after the patient and provide the necessary ancillary care. In addition, attendees noted that while the patient did not have a strict right to refuse treatment, being incompetent, the patient’s expressed wishes should still at least be considered by the clinician when attempting to determine what would be in the patient’s best interests.
Mental capacity case 2: Surgery refusal
The case: The patient has a fall, and on being admitted is diagnosed with neck arthritis; decompression surgery is recommended to avoid risk of paraplegia, but the patient refuses. Another fall occurs a few weeks later, and surgery is again refused. The patient also refuses to allow safety improvements to be made in his home. A psychiatrist assesses that the patient lacks decisional capacity concerning the surgery, but possesses it for the home improvements.
While the clinician could impose the surgery, attendees noted that it was not a life-saving operation and carried its own risks; without imminent threat and a clearer medical indication, it seemed inappropriate to override the expressed wishes of the patient (again, even without capacity, those wishes are at least relevant). Concerning the home improvements, attendees thought that further persuasion might be effective at convincing the patient to allow changes to be made to the living situation; but absent such persuasion, there may not be much the hospital could do for the patient.
Part III: Advance Care Planning
Dr. Pang’s introduction
Continuing discussion of end of life matters from the previous day, Dr. Pang Weng Sun (Yishun Community Hospital) gave a talk focused on advance care planning (ACP). He began with a historical overview of the development of ACP, from the classic Quinlan and Cruzan cases through 1996’s Advance Medical Directive Act in Singapore, into the contemporary landscape that has put great emphasis on ACPs, which are not legally binding but are meant to guide physicians and family members’ decisions. Dr. Pang reported positively on his own experience bringing the Gundersen Health System’s approach (based in Wisconsin in the US) to Singapore; under that approach, staff are trained to engage in adaptive conversations with patients on ACP tailored to the patient’s particular prognosis, with the outcome of that conversation carefully documented for use if the patient loses capacity. Challenges remain, of course, including how to ensure the ACPs are accessible to the patient’s future caregivers and attending to ACP requests for non-indicated medical treatments. But having conversations with patients and their physicians on these topics is seen as essential to promoting patients’ interests when they are no longer able to speak for themselves.
ACP case 1: Informal ACP
An elderly woman is admitted for sepsis, initially telling physicians she did not want surgery. Her condition worsened, and she became comatose. Physicians believed the surgery could save her life and her earlier expression was ill-informed, but the family wished to respect her earlier expressed preferences. The patient regained some consciousness, but was still sedated and quite groggy; the physicians went back to the patient in this state and obtained verbal agreement to go ahead with the surgery.
The case raises the question as to whether the initial refusal or later agreement under sedation should be respected – or neither. Participants pointed out the need to explore more why the family did not want the surgery, which may be partly due to lack of resources to look after the ill woman. The reasons for refusal may help answer whether the earlier expression should be respected. But it was pointed out that, if the physicians think the initial refusal was inoperable because of lack of appreciation of her prognosis, the later expression of agreement would also be inoperable because of the sedation. In that case, physicians would have to make a judgment about the best interests of the patient, taking the family’s wishes into account.
ACP case 2: Reversal
The second ACP case also involved a reversal of preference. A patient has chronic respiratory failure; at various points in treatment over three years, the patient refused ventilator support, nasogastric tube and percutaneous gastronomy because of the pain, discomfort and ‘ugliness’ of the procedures. However, in the latest admission for pneumonia, the patient – to the surprise of his spouse – stated he changed his mind, and wanted full active management, including intubation and ventilator support. The patient declined to give a reason for his change of heart.
Discussants felt that it was important for physicians to probe more for the reason for the change of mind. Sometimes in such cases, decisions to go for full active management are brought about by religious convictions, in which case it may be useful to engage another member of his faith to have a frank conversation on the topic with him. But in the end, given that the patient is competent and active management is medically indicated, the patient is not required to justify to the attending physicians a change of heart. The new preference should be respected.
Part IV: ‘Difficult’ Patients
Dr. Joseph’s introduction
Dr. Roy Joseph gave a wide-ranging talk on ‘difficult’ patients (National University Hospital). Dr. Joseph clarified, though, he likes to think in terms of difficult encounters, rather than difficult people per se. And in these encounters, he advised following four E’s: Engage with patients; Empathize with their struggles and difficulties; Educate them as to the medical facts of the case; and Enlist the help of others (medical social workers, clinical ethics committees, etc.) to resolve disputes.
‘Difficult’ patients case 1: Premature Caesarian Section
In perhaps the most challenging case of the conference, a woman presents 30 weeks pregnant and demands the baby be brought out in a caesarian section, or she will kill herself. She has a history of mental illness, depression and suicide attempts, and is currently taking psychotropic medicine, in addition to having a very unstable home life. However, a psychiatric consultation declares her competent to make medical decisions concerning her pregnancy. A premature caesarian section is quite risky, hundreds of times more so than a regular birth; the infant mortality rate from such procedures is about 10%. However, the psychiatric team believes the risk of self-harm if the procedure is not carried out (or the risk in restraining her for 4 weeks, when a caesarian can be safely performed) exceeds the medical risks of the procedure.
The general consensus from participants was that, despite the declaration of competence, the woman should be restrained for the 4 weeks. The c-section was not medically indicated, making it problematic to perform the procedure, and it is justifiable to coercively restrain someone in order to prevent them from committing suicide. Indeed, the declaration of competence itself was cast into doubt, given the woman’s mental condition and suicidal threats. A small minority of participants disagreed, arguing that restraining for four weeks would be too deleterious to the woman’s health, and may exacerbate the suicide risk afterwards. The question of how to handle the child afterwards also came up. Presumably the case would be referred to the Ministry of Social and Family Development, and some wondered whether sterilization should be considered due to the woman’s history of numerous prior pregnancies (some terminated and others brought to term with the child put up for adoption).
‘Difficult’ patients case 2: The difficult son
In a more straightforward case, an elderly woman arrived in Singapore to live with her only son. She is admitted for pneumonia; her condition oscillated between needing ICU care and apparent recovery, but after several weeks she has severe respiratory failure and put on ventilator support, with a prognosis that recovery was very unlikely. At this point, the son strongly objects to the treatment of his mother, claims the hospital was negligent, and refuses to either pay the hospital bills or allow her to be discharged with support. Meetings between the son and treatment team become increasingly hostile, with regular threats to make a complaint to the Ministry and late-night hours-long phone calls haranguing the nurses on duty.
Based on the information provided, participants generally felt that the physicians and consulting CEC or social worker should delve more into the family background and history to ascertain the motives of the son in his complaints. In addition, it was felt that providing the son with detailed documentation of what procedures were done and why, as well as regular reports on his mother’s progress, may placate him. A carefully delineated engagement plan may be needed to manage future interactions with the son while continuing care. After such procedures are in place and tensions have cooled, the team may be in a position to revisit discharge.
Stand-alone talk: Pilot Study of Cases Referred to a CEC
Dr. James Low (KTPH) and Mr. Lim Zhen Yu (NUS, pictured above) gave a brief report of their pilot study on Khoo Teck Puat Hospital’s CEC referrals. Their study involved thematic analysis of the hospital’s CEC reports from 2012-2014 using Jonsen’s 4-box method, dividing into medical considerations, patient preferences, quality of life and contextual features. Based on this analysis, the authors saw a need for greater advance care planning that can help resolve disputes at a later stage. Other recommendations included emphasizing palliative care over aggressive treatment to patients, empathetically engaging with patients during disputes, and facilitating family consensus in decision-making.
Stand-alone talk: Clinical Ethics in Primary Care
The conference finished with Dr. Anne Slowther (Warwick) giving an informative talk on clinical ethics involvement in the primary care setting. While CEC work has to date primarily focused on the hospital setting, the same sort of issues can come up in primary care practice, including: obtaining appropriate consent; managing family disputes; the role of resource constraints; and managing end of life decisions. But given the different context, a different approach from hospital CECs may be needed – a process that is more based in social, relational or narrative ethics rather than systematic application of high-level principles. And there will be unique organizational challenges of how to set up a family practice CEC without a large central hospital to house it, and get a diverse array of family practitioners to engage with the body once it is set up. One promising model is a ‘hub and spoke’ system with a central body that sets standards and sends out teams to individual locales as needed, while another is to train individual facilitators in ethics deliberation to operate autonomously at clinics themselves, rather than a centralized body. For now, we need more conversations with primary care physicians to obtain buy-in on the idea of clinical ethics consultation in that setting and perspectives on what sort of model is the best to pursue.
We would like to thank once again all the speakers, facilitators and organizers of the conference for helping make it such a successful event, and especially the CENTRES admin team (Eva Koh and Rachel Phang, pictured above at the closing ceremony with Prof Alastair Campbell) for all their hard work. Next year’s conference will be somewhat different, as CENTRES is hosting the International Conference on Clinical Ethics Consultation in May 2017. Announcements concerning that conference, including calls for abstracts, will be posted here and on our main website, with notices sent out to our mailing lists.