Relational Autonomy, the Right to Reject Treatment, and Advance Directives in Japan

Although the patient’s right to decide what they want for themselves, which is encompassed in the notion of ‘patient-centred medicine’ and ‘informed consent’, is widely recognised and emphasised in Japan, there remain grave problems when it comes to respecting the wishes of the no-longer-competent when death is imminent. In general, it is believed that the concepts above do not include the right to refuse treatment when treatment withdrawal inevitably results in death, even when the patient previously expressed the wish to exercise this right when competent. In this paper, I first explain the current social and legal situation in Japan, where the lack of legal clarity regarding the right to reject treatment tends to result in doctors adopting the interpretation of patients’ words that is least conducive to treatment withdrawal. I then argue that the right to refuse treatment should be taken seriously, even when the patient is no longer competent, or the treatment refusal will result in death. I suggest that the concept of relational autonomy might have some practical and valuable implications in a country where individual autonomy is considered incompatible with societal values. Finally, I answer possible objections to relational autonomy and address the widespread societal concern about sliding down the slippery slope from allowing the right to refuse treatment to the obligation to die.

Honouring Wishes of Patients: An Islamic View on the Implementation of the Advance Medical Directive in Malaysia

An Advance Medical Directive (AMD) is a document in which competent patients express their wishes regarding their preferred choice of future medical plans in the event they become incompetent. AMD is important in relation to the patient’s right to refuse treatment. However, they must also consider cultural and religious values of different communities. In Islam, there are several concerns that need to be addressed, namely the validity of the AMD according to Islamic jurisprudence and patients’ right to end-of-life decision-making. To address these concerns, this article refers to multiple sources of Islamic jurisprudence, such as the Quran, the tradition of Prophet Muhammad and the works of Islamic scholars related to this topic. Based on the findings, Islam does not forbid the use of AMD as a method to honour patients’ wishes in their end-of-life care. Islamic jurisprudence emphasises on the importance of seeking patients’ consent before carrying out any medical procedures. However, several conditions need to be given due attention, such as: i) a patient’s cognitive capacity during the process of drawing up an AMD; ii) the professional views of medical experts; iii) the involvement of family members in end-of-life care and iv) the limitations of a patient’s decision-making in creating an AMD.

Orientations to epistemics and deontics in treatment discussions

© 2015 Elsevier B.V. An ideological shift to patient-centered health care raises questions about how, in the face of medical authority, patients can assert agency in interactions with doctors. This study uses conversation analysis to explore how epistemic and deontic orientations are raised and made relevant in different types of responses to treatment proposals across two health care settings - New Zealand general practice consultations and Swedish hospital-based physician encounters. By examining responses ranging from acceptance to strong resistance, we show patient practices for deferring to and resisting medical authority, which includes claiming independent access to expert knowledge and raising everyday, experientially based concerns. Doctors rightfully privilege their own epistemic expertise in treatment decisions but they also take patient experiences into consideration. In cases of strong resistance we found doctors raising patients' ultimate right to refuse treatment recommendation. Our analysis further nuances current knowledge by documenting the ways epistemic and deontic domains are observably relevant forces shaping the sequential unfolding of treatment proposals.

Orientations to epistemics and deontics in treatment discussions

© 2015 Elsevier B.V. An ideological shift to patient-centered health care raises questions about how, in the face of medical authority, patients can assert agency in interactions with doctors. This study uses conversation analysis to explore how epistemic and deontic orientations are raised and made relevant in different types of responses to treatment proposals across two health care settings - New Zealand general practice consultations and Swedish hospital-based physician encounters. By examining responses ranging from acceptance to strong resistance, we show patient practices for deferring to and resisting medical authority, which includes claiming independent access to expert knowledge and raising everyday, experientially based concerns. Doctors rightfully privilege their own epistemic expertise in treatment decisions but they also take patient experiences into consideration. In cases of strong resistance we found doctors raising patients' ultimate right to refuse treatment recommendation. Our analysis further nuances current knowledge by documenting the ways epistemic and deontic domains are observably relevant forces shaping the sequential unfolding of treatment proposals.

Public attitudes and health law in conflict: somatic vs. mental care, role of next of kin, and the right to refuse treatment and information

Background Norwegian law and regulations regarding patient autonomy and the use of coercion are in conflict with the Convention on the Rights of Persons with Disabilities (CRPD) and the Oviedo Convention on several points. A new law concerning the use of coercion in Norwegian health services has been proposed. In this study we wanted to investigate the attitudes of the Norwegian lay populace with regards to some of these points of conflict. Methods An electronic questionnaire with 9 propositions about patient autonomy, the use of coercion, the role of next of kin, and equality of rights and regulations across somatic and mental health care was completed by 1617 Norwegian adults (response rate 8.5%). Results A majority of respondents support the patient’s right to refuse treatment and information in serious illness, that previously expressed treatment preferences should be respected, that next of kin’s right to information and authority in clinical decision-making should be strengthened, and that this kind of legal regulations should be equal across somatic and mental health care. Conclusions The findings in this study suggest that the opinions of the Norwegian lay populace are in conflict with the national law on several points relating to patient autonomy, the role of next of kin and use of coercive measures, and different legal regulation of somatic vs. mental health care. The study suggests that the populace is more in line with the CRPD, which supports equal rights across somatic and mental health care, and the Oviedo Convention, which does not allow for the same degree of strong paternalism regarding coercive measures as the current Norwegian law. This can be taken to support the recently proposed legislation on the use and limitation of coercion in Norwegian health services.

“Thanks, But No Thanks!” Patient Refusal of ED Diagnosis and Treatment

Patient refusal of medical treatment that appears to be in the patient’s best interest is a common challenge for emergency physicians. In the United States, adults have the right to refuse treatment, including life-sustaining medical treatment. The patient must both possess the capacity to make the decision and be offered an opportunity to understand the potential consequences of refusal. The determination of capacity is necessary in deciding when to honor a patient’s refusal. Parents and guardians generally have the right to make health care decisions for their children, but those decisions need to align with the best interests of the child. Documentation of the patient’s refusal of treatment against medical advice may be of some evidentiary value but does not ensure legal protection from liability. Patients who have the capacity to refuse medical treatment should be offered the opportunity to learn and consider the potential consequences before physicians respect their autonomous refusal.

The Right to Refuse Treatment for Infectious Disease

One of the central tenets of contemporary bioethics is that mentally competent persons have a right to refuse medical treatment, even if the refusal might lead to the individual’s death. Despite this principle, laws in some jurisdictions authorize the nonconsensual treatment of persons with tuberculosis (TB) or other serious infectious diseases, on the grounds that doing so is necessary to protect the safety of others. This chapter argues that, in the vast majority of situations, overriding a refusal of treatment for infectious disease is not justifiable, as the risk to third parties can be avoided by the less restrictive alternative of isolating the patient. At the same time, it rejects the extreme position that the nonconsensual treatment of infectious disease is never appropriate. Instead, it concludes that compelling an individual to undergo treatment for infectious diseases may be ethically justifiable in exceptional situations if a refusal of treatment poses a grave risk to third parties, the treatment is not overly burdensome and has been established to be safe and effective, and less restrictive alternatives, including humanely isolating the patient, are not feasible under the circumstances. The burden should be on those seeking to compel unwanted treatment to demonstrate that these requirements have been met.

Legalisering af dødshjælp – den indirekte afvisning

Legalisation of assisted dying is supported in particular by two arguments: 1) avoiding unbearable suffering and 2) respecting the right of self-determination (individual autonomy). This chapter raises objections to both. It is problematic that assisted dying aims to remove the suffering by eliminating the sufferer. The argument for respect for the right of self-determination is also analysed, with emphasis on autonomy in the sense that the Danish Health Care Act affords an unlimited right to refuse treatment, but not a right to demand a specific treatment. Whether autonomy is genuinely possible in connection with assisted dying is questioned, as autonomy will always be relative to an assessment of the patient’s quality of life. How assisted dying can affect the patient-physician relationship is also discussed. Finally, there is the conclusion that if the distressed and despairing person is met with the suggestion that now death is to be preferred, this also sends a message that the person is dispensable.