Vaccination of individuals lacking decision-making capacity during a public health emergency.

This paper explores the ethical challenges in deciding whether to vaccinate individuals lacking the decision-making capacity needed to provide informed consent during a public health emergency like COVID-19. The best interests standard ordinarily governs such decisions, which under the law in jurisdictions like England, Wales and Singapore takes into account the individual's past wishes and present preferences. However, in a public health emergency, the interests of third parties become more salient: those whom the unvaccinated individual might expose to infection have an interest in the individual's being vaccinated. While current mental capacity law has not been interpreted to take such public health considerations into account, we argue that such considerations are nevertheless ethically relevant, and can legitimately be weighed up alongside other considerations such as the preferences of the individual and impacts on their health. This is most relevant for individuals lacking decision-making capacity who have previously declined or presently resist vaccination. The public health impact of vaccination may in some instances be enough to outweigh preferences of the individual and justify providing vaccination against their past or present wishes.

How should the 'privilege' in therapeutic privilege be conceived when considering the decision-making process for patients with borderline capacity?

Therapeutic privilege (TP) is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but might be inclined to refuse recommended treatments. In this paper, we explore the conceptual and practical challenges of this novel interpretation of TP. We propose that more emphasis should be placed on forms of shared and supported decision-making that foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being. The kind of privilege that doctors might need to invoke is one of time and supportive expertise to ensure a flexible, responsive approach calibrated to the individual patients' needs. The provision of such service would extinguish the need for the novel TP proposed by the Singapore Court of Appeal.

Clarifying how to deploy the public interest criterion in consent waivers for health data and tissue research.

BACKGROUND: Several jurisdictions, including Singapore, Australia, New Zealand and most recently Ireland, have a public interest or public good criterion for granting waivers of consent in biomedical research using secondary health data or tissue. However, the concept of the public interest is not well defined in this context, which creates difficulties for institutions, institutional review boards (IRBs) and regulators trying to implement the criterion. MAIN TEXT: This paper clarifies how the public interest criterion can be defensibly deployed. We first explain the ethical basis for requiring waivers to only be granted to studies meeting the public interest criterion, then explore how further criteria may be set to determine the extent to which a given study can legitimately claim to be in the public interest. We propose an approach that does not attempt to measure magnitude of benefit directly, but rather takes into account metrics that are more straightforward to apply. To ensure consistent and justifiable interpretation, research institutions and IRBs should also incorporate procedural features such as transparency and public engagement in determining which studies satisfy the public interest requirement. CONCLUSION: The requirement of public interest for consent waivers in secondary biomedical research should be guided by well-defined criteria for systematic evaluation. Such a criteria and its application need to be periodically subject to intra-committee and intra-institution review, reflection, deliberation and amendment.

Some Unresolved Ethical Challenges in Healthcare Decision-Making: Navigating Family Involvement.

Family involvement in healthcare decision-making for competent patients occurs to varying degrees in many communities around the world. There are different attitudes about who should make treatment decisions, how and why. Legal and professional ethics codes in most jurisdictions reflect and support the idea that competent patients should be enabled to make their own treatment decisions, even if others, including their healthcare professionals, disagree with them. This way of thinking contrasts with some cultural norms that put more emphasis on the family as a decision-making entity, in some circumstances to the exclusion of a competent patient. Possible tensions may arise between various combinations of patient, family members and healthcare professionals, and healthcare professionals must tread a careful path in navigating family involvement in the decision-making process. These tensions may be about differences of opinion about which treatment option is best and/or on who should have a say or influence in the decision-making process. While some relevant cultural, legal and policy considerations vary from community to community, there are ethical issues that healthcare professionals need to grapple with in balancing the laws and professional codes on decision-making and the ethical principle of respecting patients and their autonomy. This paper will highlight and propose that a partial resolution to these issues may lie in relational understandings of autonomy, which in principle justify interventions by healthcare professionals and family that support patients in decision-making.

Advance Care Planning in a Multicultural Family Centric Community: A Qualitative Study of Health Care Professionals', Patients', and Caregivers' Perspectives.

CONTEXT: Advance care planning (ACP) has been shown to improve end-of-life care, but it was developed in the U.S., and most research has been conducted in western communities. OBJECTIVES: We aimed to study the attitudes and perceptions of patients with life-limiting illnesses, informal caregivers, doctors, nurses, and medical social workers regarding ACP in a multicultural family centric community. METHODS: We conducted an explorative qualitative study, using focus groups and individual in-depth interviews. We used purposive sampling techniques to recruit 61 adults (15 doctors, 13 nurses, 5 medical social workers, 15 patients, and 13 caregivers) from multiple health care settings across the country. RESULTS: The participants are genuinely anxious about the implementation of ACP. They had positive and negative expectations of ACP. Many were confused about the legal framework for health care decision-making and expected ACP to be of limited value because family members, rather than the patient, were usually the key decision makers. CONCLUSION: A nuanced approach to ACP that considers the family network is required in multicultural family centric communities. Policies should be reconciled to create a more consistent message that respects patients, the family, and is legally coherent. Further research could focus on adaptations of ACP to promote its acceptance in such communities.

Surveys of Stroke Patients and Their Next of Kin on Their Opinions towards Decision-Making and Consent for Stroke Thrombolysis.

INTRODUCTION: Early initiation of stroke thrombolysis is associated with improved outcomes. Procurement of consent is a key factor in prolonging the door-to-needle duration. This study aimed to determine the attitudes and preferences of stroke patients and their next of kin (NOK) towards decision-making for stroke thrombolysis in Singapore. MATERIALS AND METHODS: We surveyed acute ischaemic stroke patients (n = 171) who presented beyond the 4.5-hour therapeutic window and their NOK (n = 140) using a questionnaire with scenarios on obtaining consent for intravenous thrombolysis. RESULTS: In the patient survey, 83% were agreeable for their NOK to decide on their behalf if mentally incapacitated and 74% were agreeable for the doctor to decide if the NOK was absent. In the NOK survey, the majority (81%) wanted to be consulted before mentally capacitated patients made their decision; 72% and 74%, meanwhile, were willing to decide on behalf of a mentally capacitated and mentally incapacitated patient, respectively. In the scenario where a doctor recommended a mentally incapacitated stroke patient to undergo thrombolysis but the family declined, there was a near equal split in preference to follow the family's or doctor's decision in both the patient and NOK surveys. CONCLUSION: The survey found that in the decision-making process for stroke thrombolysis, there was no clear consensus on the preference for the decision maker of the mentally incapacitated patient. In Singapore, there is a strong influence of the NOK in decision-making for thrombolysis.

Cultural influences upon advance care planning in a family-centric society.

OBJECTIVE: Advanced care plans (ACPs) are designed to convey the wishes of patients with regards to their care in the event of incapacity. There are a number of prerequisites for creation of an effective ACP. First, the patient must be aware of their condition, their prognosis, the likely trajectory of the illness, and the potential treatment options available to them. Second, patient input into ACP must be free of any coercive factors. Third, the patient must be able to remain involved in adapting their ACP as their condition evolves. Continued use of familial determination and collusion within the local healthcare system, however, has raised concerns that the basic requirements for effective ACP cannot be met. METHOD: To assess the credibility of these concerns, we employed a video vignette approach depicting a family of three adult children discussing whether or not to reveal a cancer diagnosis to their mother. Semistructured interviews with 72 oncology patients and 60 of their caregivers were conducted afterwards to explore the views of the participants on the different positions taken by the children. RESULTS: Collusion, family-centric decision making, adulteration of information provided to patients, and circumnavigation of patient involvement appear to be context-dependent. Patients and families alike believe that patients should be told of their conditions. However, the incidence of collusion and familial determination increases with determinations of a poor prognosis, a poor anticipated response to chemotherapy, and a poor premorbid health status. Financial considerations with respect to care determinations remain secondary considerations. SIGNIFICANCE OF RESULTS: Our data suggest that ACPs can be effectively constructed in family-centric societies so long as healthcare professionals continue to update and educate families on the patient's situation. Collusion and familial intervention in the decision-making process are part of efforts to protect the patient from distress and are neither solely dependent on cultural nor an "all-or-nothing" phenomenon. The response of families are context-dependent and patient-specific, weighing the patient's right to know and prepare and the potential distress it is likely to cause. In most cases, the news is broken gently over time to allow the patient to digest the information and for the family to assess how well they cope with the news. Furthermore, the actions of families are dependent upon their understanding of the situation, highlighting the need for continued engagement with healthcare professionals.

Applying the welfare model to at-own-risk discharges.

"At-own-risk discharges" or "self-discharges" evidences an irretrievable breakdown in the patient-clinician relationship when patients leave care facilities before completion of medical treatment and against medical advice. Dissolution of the therapeutic relationship terminates the physician's duty of care and professional liability with respect to care of the patient. Acquiescence of an at-own-risk discharge by the clinician is seen as respecting patient autonomy. The validity of such requests pivot on the assumptions that the patient is fully informed and competent to invoke an at-own-risk discharge and that care up to the point of the at-own-risk discharge meets prevailing clinical standards. Palliative care's use of a multidisciplinary team approach challenges both these assumptions. First by establishing multiple independent therapeutic relations between professionals in the multidisciplinary team and the patient who persists despite an at-own-risk discharge. These enduring therapeutic relationships negate the suggestion that no duty of care is owed the patient. Second, the continued employ of collusion, familial determinations, and the circumnavigation of direct patient involvement in family-centric societies compromises the patient's decision-making capacity and raises questions as to the patient's decision-making capacity and their ability to assume responsibility for the repercussions of invoking an at-own-risk discharge. With the validity of at-own-risk discharge request in question and the welfare and patient interest at stake, an alternative approach to assessing at-own-risk discharge requests are called for. The welfare model circumnavigates these concerns and preserves the patient's welfare through the employ of a multidisciplinary team guided holistic appraisal of the patient's specific situation that is informed by clinical and institutional standards and evidenced-based practice. The welfare model provides a robust decision-making framework for assessing the validity of at-own-risk discharge requests on a case-by-case basis.

Patient and family involvement in decision making for management of cancer patients at a centre in Singapore.

BACKGROUND: The practice of patient autonomy within the prevailing bioethical framework in the West appears increasingly at odds with the prominent influence of the family in medical decision making in the Asian culture. The actual extent of involvement of patient versus the family in the decision making process for cancer management in clinical practice is largely unknown in Asia. AIMS: (1) To describe patient and family involvement in healthcare decision making in actual practice, and to determine whether those practices are consistent with Singapore law; and (2) to act as a pilot for a larger prospective study examining the preferences of cancer patients on the decision making process, and the reasons for excluding patients from that process. METHODS: A retrospective review of patients who died in an oncology ward in Singapore General Hospital from February to April 2011. Patient and family involvement in discussions on (1) disclosure of diagnosis, (2) initial treatment decisions and (3) initiation of a 'maximum ward management' order was evaluated by reviewing case notes completed by healthcare professionals. RESULTS: Data were collected for 55 patients. Involvement of patients and families at first disclosure of diagnosis was noted in 61% and 64% of cases, respectively. In 12% of cases, the family requested withholding of the diagnosis from the patient. 86% of patients were involved in the initial treatment decisions, and their family was involved in 65% of cases. Only 9% of the 32 alert patients were consulted in end of life decisions. Factors associated with lower patient involvement were advanced age and inability to speak English. CONCLUSIONS: While most cancer patients are involved in the healthcare decision making process during the early phase, familial involvement gains prominence as the disease progresses.

Attitudes and Practices on the Consent Process and Decision-making for Intravenous Stroke Thrombolysis: Physicians' Perspective.

INTRODUCTION: Earlier treatment with intravenous stroke thrombolysis improves outcomes and lowers risk of bleeding complications. The decision-making and consent process is one of the rate-limiting steps in the duration between hospital arrival and treatment initiation. We aim to describe the attitudes and practices of neurologists in Singapore on the consent and decision-making processes for stroke thrombolysis. MATERIALS AND METHODS: A survey of neurologists and neurologists-in-training in 2 large tertiary public hospitals in Singapore was conducted. RESULTS: Among 46 respondents, 94% of them considered stroke thrombolysis an emergency treatment and 67% of them indicated there is a need for written informed consent. The majority (87%) knew that from a legal perspective, the doctor should be the decision-maker in an emergency treatment for a mentally incapacitated patient. However, 63% of respondents reported that it is the next-of-kin who usually makes the decision in actual practice. If confronted with a mentally incapacitated stroke patient, 57% of them were willing to be the proxy decision-maker and 13% of them were not. In 3 commonly encountered vignettes when a mentally incapacitated patient was being considered for stroke thrombolysis, there was no clear consensus on the respondents' practices. CONCLUSION: The next-of-kin is usually the decision-maker for stroke thrombolysis in practice for a mentally incapacitated patient despite most doctors considering thrombolysis an emergency treatment. This, together with the lack of consensus and variance in decision-making and consent practice amongst neurologists for stroke thrombolysis, demonstrates the need to develop best practice guidelines to standardise healthcare practices for greater consistency in health service delivery.

The mental capacity act: implications for patients and doctors faced with difficult choices.

The Mental Capacity Act (MCA) came into effect in March 2010 but the impact of this groundbreaking legislation on the doctor-patient relationship has not yet been studied in Singapore. It is evident that communication between healthcare professionals, patients and their loved ones has never been so critical. Translating this into practice, healthcare professionals must identify the decision-maker to obtain consent from the correct person. Consent for healthcare and treatment must be obtained from the patient with capacity or the patient's legally appointed proxy decision-maker under a Lasting Power of Attorney (LPA) where the patient lacks capacity. However, the doctor is the decision-maker for patients lacking capacity in matters of life-sustaining treatment or treatment to prevent a serious deterioration of the patient's health. All decisions made on behalf of persons lacking capacity must be made in their best interests. Capacity assessments must be properly conducted and if a patient has the capacity to make the decision then healthcare professionals must take practicable steps to help them make a decision.