Family Involvement in the End-of-Life Decision-Making Process: Legal and Bioethical Analysis of Empirical Findings.

End-of-life decision making involves clinicians, patients, and relatives; yet, the law in Israel hardly recognises the role of relatives. This raises the question of the law's impact in practice and, hence, whether it should be amended. This issue is examined on the basis of findings from a qualitative, interview-based study conducted in Israel among relatives of dying patients. The findings indicate that there are areas in which clinicians and relatives do not adhere to the law in the end-of-life decision-making process. For example, they do not always ascertain the patient's end-of-life preferences, which ignores a patient's right to autonomy and their right to make informed decisions. The apparent gaps between the actual conduct of clinicians and relatives on the one hand and the directives of the Israeli Dying Patient Act 2005 on the other, lead us to propose several changes to the Act.

It Takes a Village to Raise a Child: Solidarity in the Courts-Judicial Justification for Posthumous Use of Sperm by Bereaved Parents.

The practice of posthumous use of sperm raises social, ethical, and legal questions. We examine the issue of who should be allowed to use the sperm-only the deceased's spouse or the deceased's parents as well-from the perspective of solidarity and relational autonomy. Following a theoretical discussion of various accounts of solidarity and relational autonomy, the legal status of posthumous assisted reproduction is examined in three jurisdictions-the USA, Australia, and Israel-in which most applications to the courts were submitted by the deceased's parents. In Israel, we found fifteen court rulings on requests for posthumous use of sperm and fourteen in Australia. A smaller number were found in the case of the USA. The analysis reveals that Israeli and Australian courts employ solidarity-based arguments to justify their decisions to allow posthumous use of sperm, particularly when the deceased's true wishes are unknown. We thus conclude that the posthumous use of sperm can be legally extended to include the deceased's parents based on solidarity and relational autonomy arguments.

Companions or patients? The impact of family presence in genetic consultations for inherited breast cancer: Relational autonomy in practice.

As in other areas of medical practice, relatives accompany patients to genetic consultations. However, unlike in other areas, the consultations may be relevant to the relatives' health because they may be at risk of developing the same genetic condition as the patient. The presence of relatives in genetic consultation may affect the decision-making process and it raises questions about the perception of patient autonomy and the way it is practiced in genetics. However, these issues have not been examined in previous empirical studies. This article aims to fill this gap by reporting findings from a qualitative study with clinicians working in the area of inherited breast cancer. The findings indicate that family presence has an impact on the patient's decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier. The findings further indicate that, unlike in other areas of medical practice, blood relatives who are present in consultations are perceived by clinicians as patients or potential patients, and this in turn increases their involvement in discussions in the consultation room. Finally, the findings indicate that in genetics, a relational approach to autonomy is applied. Decisions are made in a social context, where the relatives' views are heard and taken into account. The findings suggest that the conventional bioethical approach to autonomy, which perceives the decision-making unit as comprising a clinician and an individual patient, is challenged in genetics. The findings thus suggest that bioethicists, lawyers and policy-makers should consider whether this individualistic approach is still valid and applicable.

Patients' Attitudes Towards Disclosure of Genetic Test Results to Family Members: The Impact of Patients' Sociodemographic Background and Counseling Experience.

Many factors predict the intention to disclose genetic information to relatives. The article examines the impact of patients' socio-demographic factors on their intention to disclose genetic testing results to their relatives. Data were collected in eight genetic clinics in Israel. Patients were requested to fill in a questionnaire after counseling. A convenience sample of 564 participants who visited these clinics was collected for a response rate of 85 %. Of them, 282 participants came for susceptibility testing for hereditary cancers (cancer group), and 282 for genetic screening tests (prenatal group). In the cancer group, being secular and having more years of education correlated positively with the intention to disclose test results to relatives. In the prenatal group, being married and female correlated positively with the intention to disclose. In the cancer group, being religious and with less years of education correlated positively with the view that the clinician should deliver the results to the family. In the prenatal group, being male and unmarried correlated positively with this belief. In both groups, being of young age correlated with the perception that genetic information is private. Varied sociodemographic factors affect the intention to inform family members. Thus, knowing the social background of patients will shed light on people's attitudes to genetic information and will help clinicians provide effective counseling in discussions with patients about the implications of test results for relatives.

DOCTORS' LIABILITY TO THE PATIENT'S RELATIVES IN GENETIC MEDICINE: ABC V St George's Healthcare NHS trust[2015] EWHC 1394 (QB).

This comment analyses the recent High Court's decision in ABC v St George's Healthcare NHS Trust. In this case, the court struck out a claim brought by a patient's daughter against her father's doctors for their failure to warn her of his hereditary disease. The claimant argued that the doctors' failure caused her harm and violated her rights under the European Convention on Human Rights. It is argued in this comment that the judge should have accepted the claimant's application.

ONE SIZE FITS ALL? ON PATIENT AUTONOMY, MEDICAL DECISION-MAKING, 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.

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 patient's 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.

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 patient's husband in the decision-making process. It also reflects a relational rather than an individualistic perception of patient autonomy.

Patient autonomy and relatives' right to know genetic information.

One of the most difficult issues doctors face is a conflict between their professional duties. Such a conflict may arise when doctors know that information has implications not only for patients but also for family members but their duty of confidentiality prevents them from disclosing it. A comparative analysis of English and Israeli medical law reveals that the doctors' duty is based on two principles: a liberal perception of patient autonomy and an overriding utilitarian principle of prevention of harm. However, socio-medical research indicates that these principles do not entirely reflect the views of patients and doctors and are too narrow to deal with the complex situations in practice. Thus, it is argued that the doctor's legal duty of confidentiality should be reconsidered and qualified when it concerns the family. It is suggested that if medical law seeks to recognize the various interests family members have in genetic information then we should consider a different approach, founded on a relational interpretation of autonomy and communitarian notions of solidarity and moral responsibility. This approach perceives confidentiality and privacy as embracing the family unit, based on the view that close relatives are not entirely outside the private sphere of the individual but rather are integral to his or her identity. Thus, to the utilitarian mechanism available in medical law this approach adds a social criterion: The effect any decision (to disclose or not to disclose) will have on the familial relationship and on the dynamics of the particular family. This will provide a more flexible and workable alternative for doctors to resolve familial tensions over access to genetic information.

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.

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.

The loved ones: families, intimates and patient autonomy.

Patient autonomy is one of the central values in medical ethics. It is generally understood as recognition of patients' rights as free individuals answerable only to themselves. This emphasis on the individual leaves open the question of the position of the patients' 'loved ones', that is of families and significant others. The authors examine this question in three areas of law and medical ethics. Organ donation offers an example of preference given by medical ethics to family views, notwithstanding an expressed wish of the deceased to donate, and the legal position protecting such a request. Decisions concerning the treatment of incompetent patients illustrate consideration for the family in medical ethics, but hesitations in both law and ethics in accepting family views once expressed. And the tension between the interests of patients and family members over the access to genetic information usually results in respecting the patient's right to confidentiality. This individualistic perception of autonomy, as adopted by medical law, overlooks the patient's relationships with others and is too narrow to face the complexities of human lives.