Refusal for religious reasons of a blood transfusion for her husband by wife as legal proxy ignored by the doctors - can the wife claim damages?

A scenario is presented in which a wife's request for religious reasons, and in accordance with her husband's wishes, that her husband not be given a potentially life-saving blood transfusion was ignored by the doctors. Her husband subsequently died. The question then arose whether her husband's estate, or she as his legal proxy, could bring an action for pain and suffering and sentimental damages against the doctors on behalf of her husband. When a patient dies and medical malpractice is involved, the patient's legal rights are extinguished, and their estate cannot begin or continue with a legal action for pain and suffering or sentimental damages - unless the pleadings in the case have been closed (litis contestatio). The result is that the estate or the spouse of a deceased patient may not sue for pain and suffering or sentimental damages on behalf of such patient. The spouse may only claim damages for pain and suffering and sentimental damages if he or she can show that the defendants' conduct regarding the deceased directly affected the spouse concerned. Where emotional shock was caused negligently, a spouse may only recover patrimonial damages and damages for pain and suffering. Where such shock was caused by intentional conduct, additional sentimental damages may also be claimed.

Advance Directives State Requirements, Center Practices, and Participant Prevalence in Adult Day Services Centers: Findings From the 2016 National Study of Long-Term Care Providers.

OBJECTIVES: Adult day services centers (ADSCs) may serve as an entrée to advance care planning. This study examined state requirements for ADSCs to provide advance directives (ADs) information to ADSC participants, ADSCs' awareness of requirements, ADSCs' practice of providing AD information, and their associations with the percentage of participants with ADs. METHODS: Using the 2016 National Study of Long-Term Care Providers, analyses included 3,305 ADSCs that documented ADs in participants' files. Bivariate and linear regression analyses were conducted. RESULTS: Nine states had a requirement to provide AD information. About 80.8% of ADSCs provided AD information and 41.3% of participants had documented ADs. There were significant associations between state requirements, awareness, and providing information with AD prevalence. State requirement was mediated by awareness. DISCUSSION: This study found many ADSCs provided AD information, and ADSCs that thought their state had a requirement and provided information was associated with AD prevalence, regardless of state requirements.

Living will legislation: between advance healthcare directives and advance care planning, which is the better way to go.

Following drawn out, contentious parliamentary deliberations, the Italian legislature has enacted bill n.219/17, meant to regulate advance healthcare directives. The letter's authors are critical of some key aspects relative to advance directives, contending that it would be preferable to opt for advance care planning, which enables already severely ill patients who are fully aware of the consequences of their disease to choose what therapeutic pathway to undertake.

May a sample be legally removed or an autopsy undertaken without an advance directive or proxy consent to determine whether a critical care patient at risk of COVID-19 infection has died as a result of the virus?

It has recently been suggested that ethically and legally the obtaining of biological samples for research after death during the COVID-19 pandemic in South Africa justifies a waiver of consent followed by a deferred proxy consent. However, it is submitted that because deceased persons are not protected by the Constitution, and only partially protected by common law and statute law, such consent and the need for consent to autopsies may be dispensed with altogether under the common law doctrine of 'necessity'. It is pointed out that such information is in the public interest because it will inform critical care facilities on how to save lives of future patients and assist government in responding to the COVID-19 pandemic by adequate planning. It is also reasonably justifiable in the public interest to ascertain the COVID-19 status of deceased persons who may have been exposed to the virus, in order to protect their family, friends, healthcare practitioners, undertakers and staff members, and members of the public with whom they have been in contact. Finally, it is suggested that the law can be clarified by amending the Disaster Management COVID-19 regulations to do away with consent for such autopsies or tissue sample collections from deceased persons exposed to the risk of contracting the virus, subject to certain conditions.

Do advance directive attitudes and perceived susceptibility and end-of-life life-sustaining treatment preferences between patients with heart failure and cancer differ?

There is limited evidence on the relationships of preference for end-of-life life-sustaining treatments [LSTs] and diagnostic contexts like heart failure [HF] or cancer, and patient attitudes toward and perceived susceptibility to use advance directives [ADs]. Thus, this study aimed to compare attitudes and perceived susceptibility between HF patients and community-dwelling patients with cancer, and examine the associations of these variables with their preference for each LST (cardiopulmonary resuscitation [CPR], ventilation support, hemodialysis, and hospice care). Secondary data were obtained from 36 outpatients with HF (mean age, 65.44 years; male, 69.4%) and 107 cancer patients (mean age, 67.39 years; male, 32.7%). More patients with HF preferred CPR than cancer patients (41.7% and 15.9%, χ2 = 8.88, P = 0.003). Attitudes and perceived susceptibility were similar between the two diagnostic cohorts. HF patients and those with more positive attitudes had greater odds of preferring CPR (odds ratio [OR] = 3.02, confidence interval [CI] = 1.19, 7.70) and hospice care (OR = 1.14, CI = 1.06, 1.23), respectively. HF diagnosis and AD attitudes increased the preference for CPR and hospice care, respectively. This suggests that it is important to gain positive attitudes toward ADs and consider diagnostic context to facilitate informed decision-making for LSTs.

The PACT advance decision-making template: preparing for Mental Health Act reforms with co-production, focus groups and consultation.

BACKGROUND: Advance decision making (ADM) in mental health is supported by stakeholders but faces significant barriers. These must be overcome, not least to support the UK government's commitment to introduce statutory mental health ADM in England and Wales. AIMS: To build understanding and address the gap between aspirations for ADM and actuality, with feasible co-produced ADM resources. METHODS: We used focus groups and consultation to explore experience and views of stakeholders on ADM processes and materials. Discussions included feedback on an ADM template which was adapted accordingly throughout the research process. RESULTS: Between September 2017 and December 2019, 94 individuals, representing stakeholders advised on design and process of ADM, alongside wider discussion at stakeholder events. Collaborative ADM was universally supported. Valued outcomes were diverse and combining aspirations with practicality required resolving dilemmas. A prototype template and guidance, the PACT (Preferences and Advance decisions for Crisis and Treatment) was co-produced, designed to help manage fluctuating mental capacity through collaborative decision making. The PACT enables direct engagement with medico-legal frameworks, with provision to facilitate person-centred assessments, treatment refusals and requests. Resources including supported engagement and cross-agency awareness and accessibility were seen as essential. CONCLUSION: Our research confirms high stakeholder motivation to engage in ADM is hampered by multiple barriers. We identified enabling conditions for ADM and co-produced an ADM template and guidance which supports achievement of a range of valued outcomes. Further developments to support and evaluate the process of implementation are now needed to prepare for statutory change.

Indeterminacy of identity and advance directives for death after dementia.

A persistent question in discussions of the ethics of advance directives for euthanasia is whether patients who go through deep psychological changes retain their identity. Rather than seek an account of identity that answers this question, I argue that responsible policy should directly address indeterminacy about identity directly. Three sorts of indeterminacy are distinguished. Two of these-epistemic indeterminacy and metaphysical indeterminacy-should be addressed in laws/policies regarding advance directives for euthanasia.

Housestaff perceptions on training and discussing the Maryland Orders for Life Sustaining Treatment Form (MOLST).

BACKGROUND: On-line tutorials are being increasingly used in medical education, including in teaching housestaff skills regarding end of life care. Recently an on-line tutorial incorporating interactive clinical vignettes and communication skills was used to prepare housestaff at Johns Hopkins Hospital to use the Maryland Orders for Life Sustaining Treatment (MOLST) form, which documents patient preferences regarding end of life care. 40% of housestaff who viewed the module felt less than comfortable discussing choices on the MOLST with patients. We sought to understand factors beyond knowledge that contributed to housestaff discomfort in MOLST discussions despite successfully completing an on-line tutorial. METHODS: We conducted semi-structured telephone interviews with 18 housestaff who completed the on-line MOLST training module. Housestaff participants demonstrated good knowledge of legal and regulatory issues related to the MOLST compared to their peers, but reported feeling less than comfortable discussing the MOLST with patients. Transcripts of interviews were coded using thematic analysis to describe barriers to using the MOLST and suggestions for improving housestaff education about end of life care discussions. RESULTS: Qualitative analysis showed three major factors contributing to lack of housestaff comfort completing the MOLST form: [1] physician barriers to completion of the MOLST, [2] perceived patient barriers to completion of the MOLST, and [3] design characteristics of the MOLST form. Housestaff recommended a number of adaptations for improvement, including in-person training to improve their skills conducting conversations regarding end of life preferences with patients. CONCLUSIONS: Some housestaff who scored highly on knowledge tests after completing a formal on-line curriculum on the MOLST form reported barriers to using a mandated form despite receiving training. On-line modules may be insufficient for teaching communication skills to housestaff. Additional training opportunities including in-person training mechanisms should be incorporated into housestaff communication skills training related to end of life care.

Advance directives: Addressing the obligations of support as part of the right of a person with disabilities to equal recognition before the law?

Depending upon how they are regulated in domestic law, advance directives (ADs) can enable persons to make decisions that have legal effect in the future as directed in the AD. There is some agreement in the academic literature that ADs are a legitimate way of giving effect to the obligations arising from Article 12 (3) of the United Nations Convention on the Rights of Persons with Disabilities to take appropriate measures to provide access by persons with disabilities (PWDs) to the support they may require in exercising their legal capacity. It is the purpose of this article to question when and how ADs address the obligations of support arising from Article 12 (3), concluding that it cannot and should not be assumed that ADs address those obligations only because they embody and give effect to their maker's agency. The article instead highlights the questions that must be posed to obtain legal certainty as to when and how ADs will be a form of Article 12 (3) support. The article also refutes some of the instances in the academic literature when ADs have been presented as support, while offering an account as to how the regulation of ADs should be reconsidered in order to specifically address the obligations arising from Article 12 (3) both when PWDs can and when they cannot communicate their wishes to others.

The Briggsian Heresy? Should Previously Expressed Wishes Determine Best Interests in Decisions Relating to Withdrawal of Clinically-Assisted Nutrition and Hydration?

This paper examines the Court of Protection decision in Briggs v Briggs. It considers whether the approach of the Court, which gave effective decisive weight to a patient's previously expressed wishes about whether he should be kept alive in a minimally conscious state, is a proper application of the 'best interests' test under the Mental Capacity Act 2005. It assesses whether the Briggs approach is effectively applying a 'substituted judgement' test and considers the difficulties in ascertaining what a person's actual wishes are.

Bioethical implications of end-of-life decision-making in patients with dementia: a tale of two societies.

End-of-life decision-making in patients with dementia is a complex topic. Belgium and the Netherlands have been at the forefront of legislative advancement and progressive societal changes concerning the perspectives toward physician-assisted death (PAD). Careful consideration of clinical and social aspects is essential during the end-of-life decision-making process in patients with dementia. Geriatric assent provides the physician, the patient and his family the opportunity to end life with dignity. Unbearable suffering, decisional competence, and awareness of memory deficits are among the clinical considerations that physicians should incorporate during the end-of-life decision-making process. However, as other societies introduce legislature granting the right of PAD, new social determinants should be considered; Mexico City is an example. Current perspectives regarding advance euthanasia directives (AED) and PAD in patients with dementia are evolving. A new perspective that hinges on the role of the family and geriatric assent should help culturally heterogeneous societies in the transition of their public health care policies regarding end-of-life choices.

Social regulation activities in end-of-life: a qualitative study on completion of advance directives in Swiss nursing homes.

BACKGROUND: In Switzerland as in many countries, steady trend is observed in nursing homes to promote writing of advanced directives (ADs). Implementation of ADs reflects the rise in public concern for the persons' right to self-determination and informed decision. The issue of end-of-life conditions is particularly acute in situations with dementia. This article investigates how ADs interventions in nursing homes strive simultaneously to behave in line with the principles of care ethics and with the intention to respond to legally binding instructions. Healthcare to dying residents with dementia in nursing homes is interpreted in light of the Regulation theory. METHODS: Nursing home palliative care reference nurses were contacted through questionnaire. One hundred twenty-one addresses were reached, 69 responses were collected, giving a response rate of 57%. In order to deepen the understanding, 10 semi-directive interviews were conducted in 10 different nursing facilities with 12 palliative nurses. RESULTS: Presently, Swiss nursing homes are lacking a model of AD suitable to people with dementia. The study sheds light on dissimilarities in the purpose assigned to ADs' procedure in the different facilities. Discrepancies in end-of-life care practices reveal more the influence of structural and organisational devices specific to each setting than conflicting views on end-of-life care principles. We analyse the interpretation of the Law and its implementation in the participating NHs as compromises that could be accounted for as a form of social regulation. CONCLUSION: Dementia accentuates the uncertainty inherent to end-of-life trajectories. The implementation of standardised procedures aimed at collecting the wishes of the person deprived of his or her discernment is source of dissonances with regard to the multiple interests involved in these care situations. In this context, the drafting of ADs during end-of-life care in NH correspond to new normative constraints requiring new collective regulation actions.

Advance Research Directives: Legal and Ethical Issues and Insights from a National Survey of Dementia Researchers in Australia.

Advance research directives (ARDs) are a means by which people can document their wishes about research participation in the event of future incapacity. ARDs have been endorsed in some ethics guidelines and position statements, however, formal legal recognition is limited. A few empirical studies have investigated the views of researchers and other stakeholders on ARDs and tested strategies to implement such directives. To further knowledge in this area, we undertook a survey of dementia researchers in Australia (n= 63) to examine their views on ARDs. Most of the survey respondents (>80%) thought ARDs would promote autonomy in decision-making and enable opportunities for people with cognitive impairment to be included in research. Respondents indicated concern about directives not being available when needed (71%) and that ethics committees would not accept ARDs (60%). Few respondents had used ARDs, but a majority (from 57-80%) would be willing to offer ARDs for a range of research activities, such as observing behaviour and taking measures, blood samples or scans. Nearly all respondents (92%) agreed that current dissent should override prior wishes stated in an ARD. The survey findings are contextualised with attention to ethics guidelines, laws and practices to support advance research planning.

[Information to be provided to patients and their caregivers. The Italian Law 219/2017 on informed consent, advance directives, and do not attempt resuscitation order]. / Informazione al malato e alla famiglia. Legge 219/2017: pianificazione condivisa delle cure, disposizioni anticipate di trattamento, "do not attempt resuscitation order".

The Italian law 219/2017, enacted on January 31, 2018, regulates patients' informed consent, personalized care planning and advance directives. The law provides for patient's self-determination in all phases of life. This also applies to patients suffering from chronic, progressive, terminal disease such as heart failure. In fact, the clinical and psychosocial trajectory for heart failure patients demands an interdisciplinary, systemic approach. Advance directives should be tailor-made to patient's needs and dynamically updated through the course of the disease according to patient's and family informed and shared decision-making. Healthcare professionals will require education and training to stay up to the task both clinically, psychologically and emotionally.

Rules on informed consent and advance directives at the end-of-life: the new Italian law.

End-of-life decisions are an emergent issue for bioethical debates and practical concerns among health professionals. On December 2017, Italy enacted a new law named "Rules about informed consent and advance directives", which promotes the relationship of care in a fiduciary sense through the implementation of a correct and exhaustive information. It is also prescribed to record in writing all the patients' decisions about consent or refusal. Furthermore, the law explicitly forbids unreasonable therapeutic obstinacy for terminal patient, legitimizing deep palliative sedation. Finally, the law establishes the use of "advance directives" as a written document by which adults and capable people can express their wishes regarding health treatments and diagnostic tests in anticipation of a possible future incapacity. The law provides that doctors must comply with these directives, unless they appear clearly incongruous or not corresponding to the patient's current clinical condition.

Psychiatric advance directives in Switzerland: Knowledge and attitudes in patients compared to professionals and usage in clinical practice.

BACKGROUND: Psychiatric advance directives (PAD) were shown to be effective in the reduction of coercion and strengthening of the patients` autonomy. Therefore, the Swiss legislation was revised and stipulates that PAD must be taken into account during involuntary hospitalization. This study aimed to analyze knowledge on and attitudes towards this instrument in patients and healthcare practitioners and their usage in clinical practice. METHODS: We developed a structured questionnaire and included patients (n = 110), psychiatrists (n = 205), psychologists (n = 85), nurses (n = 268) and peers (n = 16) to rate their knowledge on and attitudes towards PAD. We registered the existing PAD in patients and peers. The response rate varied between 17% (nurses), 19% (psychologists) 21% (psychiatrists), 33% (peers) and 56% (patients). RESULTS: Only 7% of the participating patients had a PAD. Compared to the other groups, patients had the least knowledge on PAD. Psychiatrists were significantly more critical towards PAD. Concerns that PAD impede necessary and adequate treatment, restrict professionals and result in conflicts between patients and HCP were most frequently named as reason for critical attitudes. CONCLUSIONS: Although being explicitly mentioned in the Swiss legislation the usage of PAD is small. Proactive information and training of psychiatrists might be helpful for a reduction of skeptical attitudes. This might improve the attitudes and lead to active support of patients during the preparation of PAD.