Roy Gilbar

The Medical Decision-Making Process and the Family: The Case of Breast Cancer Patients and Their Husbands

OBJECTIVES The objectives of the study were (1) to assess similarities and differences between breast cancer patients and their husbands in terms of doctor-patient/spouse relationships and shared decision making; and (2) to investigate the association between breast cancer patients and husbands in terms of preference of type of doctor, doctor-patient relationship, and shared decision making regarding medical treatment. METHOD Fifty-seven women with breast cancer, and their husbands, completed questionnaires measuring doctor-patient/spouse relationships (paternalism, autonomy), and decision making regarding medical treatment. RESULTS Patients believe they have a key role in the medical decision-making process (93%) and that the participation of their husbands, and their agreement with the decision, is important (84% and 89%, respectively). Both breast cancer patients and their husbands prefer a shared decision-making process to paternalistic or autonomy-based approaches. CONCLUSION In contrast to legal and bioethical approaches, which focus on the patient as the primary decision maker, this study reflects a practical recognition of the role of the breast cancer patients husband in the decision-making process. It also reflects a relational rather than an individualistic perception of patient autonomy.

Communicating Genetic Information in the Family: The Familial Relationship as the Forgotten Factor

Communicating genetic information to family members has been the subject of an extensive debate recently in bioethics and law. In this context, the extent of the relatives’ right to know and not to know is examined. The mainstream in the bioethical literature adopts a liberal perception of patient autonomy and offers a utilitarian mechanism for solving familial tensions over genetic information. This reflects a patient-centred approach in which disclosure without consent is justified only to prevent serious harm or death to others. Based on a legal and bioethical analysis on the one hand, and an examination of empirical studies on the other, this paper advocates the adoption of a relational perception of autonomy, which, in the context of genetics, takes into account the effect that any decision—whether to disclose or not to disclose—will have on the familial relationship and the dynamics of the particular family. Adding this factor to the criteria usually advocated by lawyers and ethicists will facilitate reaching a sensitive decision, which recognises the various interests of family members beyond the risk to physical health. Taking this factor into account will require a process of deliberation both between doctors and patients, and in the family. It will also require a relaxation of medical confidentiality, as the family rather than the patient is gradually perceived as the unit of care. Moreover, adopting such a relational approach will accord with current views of doctors and patients who base their decision primarily on the nature of the familial relationship.

FAMILY INVOLVEMENT, INDEPENDENCE, AND PATIENT AUTONOMY IN PRACTICE

The legal debate about patient autonomy focuses mainly on mental capacity and provision of information. The influence of the family on the decisions of the competent adult patient has scarcely been discussed in English medical law. Dominated by the bioethical principle of individual autonomy, the law concentrates on the patient and takes an exclusionary stand regarding relatives. Hence, the aim of this article is to examine the attitude of English law towards the involvement of relatives when patients make decisions, and to investigate the views and experiences of patients and their relatives in reality. To fulfil this aim, a qualitative study was carried out in six NHS trusts in England. The study was based on in-depth interviews conducted with patients who suffer from long-term illnesses, and their relatives. In the interviews, patients stated that the relatives assisted them in making informed decisions about treatment. Patients said that relatives had an influence on the decision-making process and on the decision itself, but also reported that ultimately relatives left the final decision to the patient. The findings reflect a relational approach to patient autonomy. When making decisions about treatment, patients needed to know that their relatives would support them no matter what they decided. However, exceptional cases which demonstrated substantial familial influence suggest that the law should secure the patients interest in making their own decisions. In light of these findings, it is argued that the current exclusionary attitude expressed in English medical law towards the role of relatives should be changed.

One Size Fits All? On Patient Autonomy, Informed Consent and the Impact of Culture

While both medical law and medical ethics have developed in a way that has sought to prioritise patient autonomy, it is less clear whether it has done so in a way that enhances the self-determination of patients from non-western backgrounds. In this article, we consider the desire of some patients from non-western backgrounds for family involvement in decision-making and argue that this desire is not catered for effectively in either medical law or medical ethics. We examine an alternative approach based on relational autonomy that might serve both to allow such patients to exercise their self-determination while still allowing them to include family members in the decision-making process.

THE STATUS OF THE FAMILY IN LAW AND BIOETHICS: THE GENETIC CONTEXT

Preface The liberal-communitarian debate in medical law and ethics Formulating a family in genetics: a contextual framework English tort law and the patients family members Medical confidentiality and genetic privacy Who is the patient? the medical perception of the family The status of family members - discussion and conclusions References Index.

Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality

Genetic testing of children is the subject of ethical and legal debate. On the one hand, the literature emphasises the personal interests and rights of the individual child. On the other, the interests of the parents and the family as a whole are discussed. English law relies by and large on a patient-centred approach where the child has some say about his/her medical care. The view reflected in Anglo-American guidelines, more specifically, is that testing is potentially harmful and may compromise the child’s autonomy and confidentiality. This explains the reluctance to submit children to predictive genetic testing. An analysis of Israeli law, however, reflects a different approach, where the benefit to the child is defined more widely. This accords with the general communitarian position adopted by Israeli law, a legal position that reflects the duality of Israeli society in simultaneously promoting both fundamental human rights and family ethics. In practice, however, there may be little difference, as children in both jurisdictions have access to similar genetic services.

Disclosure of genetic information to relatives in Israel: between privacy and familial responsibility

This article presents findings from a large quantitative-based study conducted in Israel in eight genetic clinics across the country regarding patients’ attitudes to disclosure of genetic information to relatives. The study examines the similarities and differences between the two largest groups who visit genetic clinics in Israel – for prenatal screening and for carrier testing for cancer. It was found that the overall rate of intention to inform relatives was high. It was also found that respondents in the cancer group expressed a more familial-based approach than those in the prenatal screening group. In addition, a relatively high rate of non-disclosure was found in the prenatal screening group as compared to the cancer group. These findings are significant in light of a widespread wish in Israeli society to give birth to a child without a disease or disability. A reconsideration of current practices and guidelines in this area is therefore required.

Alerting relatives about heritable risks: the limits of confidentiality

Are there situations when sharing a patient’s genetic information with relatives without consent is acceptable? Anneke Lucassen and Roy Gilbar discuss

It’s arrived! Relational Autonomy Comes to Court: ABC v ST George’s Healthcare NHS Trust [2017] EWCA 336

I . I N T R O D U C T I O N This note concerns the first case to reach the English courts regarding the duty of clinicians to communicate genetic information to a patient’s relatives. In 2015, the High Court struck out a claim by a patient’s daughter against her father’s doctors, holding that they neither owed her a common law duty of care nor breached Article 8 of the European Convention on Human Rights. The Court of Appeal (Gloster, Underhill, and Irwin LJJ) unanimously reversed the High Court’s decision and allowed the case to proceed to trial. This decision, which we support, might have substantial ramifications for English medical law.

JUSTICE, EQUALITY AND SOLIDARITY: THE LIMITS OF THE RIGHT TO HEALTH CARE IN ISRAEL

The conflict between the state and the individual regarding the allocation of health care resources yields continuous discussion in law and bioethics. In many Western societies there is agreement that everyone with an equivalent health need should have equivalent access to appropriate care. This usually implies that every citizen is entitled to receive from the state at least a decent minimum of health care services. Since in this area demand always exceeds supply, a legal measure is open to patients who feel they do not receive from the state the medical service they need. They can turn to the court and ask for judicial review. The present article concentrates on this aspect of the debate. The aim of the present article is to examine the attitude of the Israeli courts to patients’ claims for services not supplied by the state. The article