Advance Healthcare Directives Research Articles

Advance Healthcare Directives: the Irish Implementation Reality from an Interdisciplinary Group Concept Mapping Study

Abstract Background Advance Healthcare Directives became legal in Ireland on 26th April 2023. While Advance Healthcare Directives are primarily rooted in patients’ legally binding refusal of treatments or interventions, they also encourage patients to set out their care preferences for the future (Government of Ireland 2015). Despite care of the older adult broadly transitioning from acute hospital to community, and a greater than ever focus on keeping older adults living at home for longer, low awareness of, and professional uncertainty around, Advance Healthcare Directives and how to integrate them into the care of the older adult has been widely expressed by Irish hospital physicians (Crowley and Doran 2022). Methods In this implementation study, Group Concept Mapping, using the relatively novel ‘GroupWisdom™’ software, is used to collect and analyse data from multiple healthcare professions to identify contextual issues that affect the implementation of Advance Healthcare Directives. 44 frontline healthcare professionals including Hospital Consultants (n=6), General Practitioners (n=5), Paramedics (n=7), Advance Nurse Practitioners (n=4), Clinical Nurse Specialists (n=4), Public Health Nurses (n=5), Critical Care Nurses (n=3), Nurse Managers (n=2), Healthcare Managers (n=2), Occupational Therapists (n=2) and Social Workers (n=4) participate in this mixed method study. Policymakers and other stakeholders are also involved throughout. Results The main implementation issues for Advance Healthcare Directives in order of importance as outlined by Healthcare Professionals are: 1) Public Education; 2) Homecare Services; 3) Timing and Location; 4) Family Members; 5) Lack of Education for the Healthcare Professional; 6) Complications for the Healthcare Professional; 7) Individual and Cultural Beliefs. Conclusion This study contributes a valuable understanding of where the implementation issues reside for healthcare professionals and policymakers, and how these can be addressed to ensure successful implementation. This implementation study focuses on practical considerations, offering multiple workable solutions to help to resolve these implementation issues on the ground.

"What you Say Matters": Review of Clinical Outcome of Advanced Medical Directives Between Cancer and Non-cancer Patients in a Chinese Culture Society.

Advance medical directives (AMD) are statements made by individuals indicating the life-sustaining treatment that they would refuse in the future when they lost their mental capacity for medical decisions. While the proposal for the AMD legislation is ongoing locally in Hong Kong SAR, there are limited reviews on the clinical outcomes associated with it. To provide a comprehensive review on clinical outcomes of signed AMD. Retrospective, multi-center study, which includes AMD signed within five cluster hospitals. Records of signed AMD from 1st JAN 2020 to 31st DEC 2022 were retrieved from a central registry. Clinical information of each patient was obtained from the electronic patient record. 456 patients with documented AMD were included in the study. 91.6% of AMD were signed by palliative care (PC) team. Majority (74.6%) of the patients were accompanied by family members or friends when AMD were signed. The concordance rate between the AMD and the medical care received was 89.5%. No patient revoked their AMD. Cancer and non-cancer patients showed similar rates of AMD concordance, frequency of Accident & Emergency Department (AED) visits or acute ward admissions, duration of hospital stays in the 30days before death, and prevalence of receiving invasive or intensive treatments. Our study demonstrated that PC team currently plays a pivotal role in AMD completion, and AMD remains important in ensuring patients' care preferences are executed across different medical conditions. With the upcoming AMD legislation in Hong Kong SAR, adequate promotion and education should be launched.

Development of a Patient-Centred Care Plan for Patients Requiring Maintenance Electroconvulsive Therapy Long-Term

IntroductionMaintenance electroconvulsive therapy (ECT) can be effective and necessary in the long-term for patients with severe and recurrent mood or psychotic disorders that are not amenable to any other forms of treatment. Patients with such treatment resistance affecting their ability to maintain minimal daily activities may eventually fall within the palliative psychiatric care domain in which advanced medical directives become an important beacon to direct care. There are Psychiatric Advance Directives which allow people with severe mental health conditions to consent to or refuse to consent to hospital admission and psychiatric treatment in the event they lose decision-making capacity and this can be especially important for a potentially controversial treatment such as ECT. However, the focus tends to be on enforcing involuntary treatment and less about a comprehensive long-term care plan. To our knowledge, there is no available framework to structure maintenance ECT as a patient-centred care plan.ObjectivesOur aim is to share the process of development of a patient-centred care plan for patients requiring maintenance ECT. Our objectives are: 1.Constant engagement with patients and family or caregivers2.Regular reviews of clinical and consent aspects of treatment3.Advocating for the welfare of patients and respect of values4.Focus on dignity especially for patients who require treatment well into old age5.Being prepared for termination of treatment if necessary MethodsWe reviewed our management of previous and existing patients on maintenance ECT and incorporated diligent consent-taking practices. Adopting good practices from known palliative approaches and involving the patient voice helped to form a framework for a patient-centred care plan.ResultsOur patient-centred care plan features half-yearly discussions about the risks and benefits of treatment, as well as an assessment of the patient’s cognition and ability to consent which may change over time. Opportunities for them to share their values and expectations of care and engagement with their caregivers about their quality of life guide the continued treatment. A framework for discussing the disruption or eventual termination of ECT prepares for scenarios where older-aged patients may develop frailty or present with acute, prolonged or devastating medical concerns. This end-of-life care approach manages anticipated psychiatric-specific behavioural concerns and prepares for the possibility of death following the planned termination of ECT for patients who required long-term treatment throughout their life. Lastly, issues of grief amongst caregivers and ethical concerns from medical staff are addressed.Conclusions We hope that our patient-centred care plan provides a well-considered conversation and structure for the initiation, continuation and termination of maintenance ECT in the long-term.Disclosure of InterestNone Declared

302 The educational experiences and perceived educational needs of multidisciplinary healthcare professionals in advanced care planning: a focus group study

Abstract Background Advanced Care Planning (ACP) is the process by which patients, their families and healthcare professionals discuss and document patient preferences regarding future healthcare decisions if an individual loses decision making capacity regarding their care. ACP has been shown to reduce hospitalisations, admission to the intensive care unit, and increase patient and family satisfaction with medical care. Despite the benefits of quality ACP, healthcare professionals continue to report inadequate training and knowledge in this area. Using multidisciplinary healthcare professional focus groups, we intended to gather descriptions from different disciplines about their educational experiences in ACP both formal and informal, and their perceived educational needs. Methods We used a qualitative focus group methodology consisting of six focus groups in total. Two focus groups of each discipline were carried out—medical, nursing, Health and Social Care Practitioners (HSCPs) working in an acute tertiary hospital. We sought to explore the differing perspectives of multidisciplinary healthcare professionals’ involvement with ACP, their educational experiences, unique educational needs, and how multidisciplinary learning could be supported. Thematic analysis was used to analyse the findings. Results There was familiarity of ACP among multidisciplinary healthcare professionals, and a consensus that varied disciplines could have a role in ACP. Participants described a lack of formal education in ACP, with skills developed through informal means primarily through experience and learning from more senior colleagues. Concerns regarding the legal aspects of ACP was commonly stated as an educational need, as were communication skills, and ACP frameworks. Time was a perceived barrier to education in ACP, as well as lack of resources. Conclusion With the enactment of the Assisted Decision-Making Act formal education in advanced care planning and advanced health care directives is essential. This education should be multidisciplinary and needs to consider the perceived educational needs of its intended learners.

Who Bears Responsibility for the Post-Acute Older Adult: Patient, Family or State?

This study explores the perceptions of hospital discharge coordinators on the issues raised for the post-acute older adult and their family, using the lens of assisted decision-making and advance directives. New legislation has been developed in Ireland to support assisted decision-making and advance directives that is largely consistent with other countries around the world. The Assisted Decision-Making Act of 2015 was fully commeced in April 2023, following lengthy debate. However, there is a lot of professional uncertainty regarding how to support and integrate Advance Healthcare Directives and assisted decision-making into the care of adults and into the role of nurses working in the community. Utilising a qualitative approach, this study conducted a series of five focus groups, with 23 participants, across the South-East of Ireland. Thematic analysis was used to interpret results. The 32-item consolidated criteria for reporting qualitative research checklist was utilised. The central finding in this study concerned the locus of control, as well as findings on burden of care and the role of the nurse. A stark incongruence of beliefs among patient, family and State was identified. Nurses must learn to circumnavigate the complex terrain involved in supporting the older adult's advance decision-making and advance healthcare directives.

Comprehensive geriatric assessment for the evaluation of the health statuses of elderly patients

Background: For elderly patients with many chronic and degenerative diseases (multiple comorbidities) and geriatric syndromes, chronic and complex problems should be comprehensively evaluated. The comprehensive geriatric assessment (CGA) is an evaluation of elderly patients in which clinical, medical, and functional evaluations are performed together.Current Concepts: Components of CGA include physical, psychological, and socioenvironmental content. In the physical aspect, the presence of various diseases, determination of the severity of each disease, multi-drug intake (polypharmacy), and vaccination records are evaluated. Geriatric syndromes should also be included in the evaluation. The functional evaluation comprises visual acuity, hearing, upper and lower extremity function, gait ability, balance, fall, urinary incontinence, weight change, oral health, nutritional status, and pain. In the psychological aspect, depression and cognitive function status are evaluated. The residential environment, degree of familial and social support, economic status, and advanced medical directives are evaluated in the socioenvironmental aspect.Discussion and Conclusion: Elderly patients with functional disabilities should be screened via the CGA for various problems and geriatric syndromes that the elderly are prone to developing. Problems found require further evaluation, treatment, and management. In this way, the health and quality of life of the elderly can be maintained and improved.

Concept of advanced medical directives in the Indian scenari

Concept of advanced medical directives in the Indian scenari

Psychiatric advance directives (Ulysses Contract): the need for a specific law and a criteria proposal for its introduction.

Advance healthcare directives in the psychiatric field raise more concerns and controversies compared to their use in other medical branches. We discuss the role of advance directives in this field and suggest a criteria proposal for the settlement of a comprehensive regulation on the matter. We analyse the existing law and discuss the ethical points in the Italian context and, in comparison, with the United Kingdom context. Numerous studies have highlighted that psychiatric patients experience advance directives as an instrument to participate in therapeutic decision-making. Regarding the usefulness of advance directives, Italy and the United Kingdom did not approve deontological rules or laws. The United Nations Commission states that, based on the principles of the Convention on the Rights of Persons with Disabilities, it is necessary to respect the spatient's will, even if it is biased by psychic disorders. The Convention does not consider advance directives; instead, they just suggest using some support to have the patient regain their competence. In case this is unsuccessful, it is necessary to appoint a substitute decision-maker to express, even in the light of the advance directives, the will that the patient would have expressed if he had been competent.

Concept of advanced medical directives in the Indian scenario

Concept of advanced medical directives in the Indian scenario

Attorneys as Healthcare Advocates: The Argument for Attorney-Prepared Advance Healthcare Directives.

Attorneys regularly prepare advance healthcare directives for their clients. However, attorneys, lacking medical knowledge, are often considered ill-equipped to prepare such documents. While recognizing and respecting the fact that advance healthcare directives pertain to decisions about medical care, this article proposes that attorneys who prepare advance healthcare directives nevertheless provide a valuable service.

Advanced medical directives or written living wills among saudi intensive care units, current practice and need to optimization: Opinion of trainees

Background: Ethical dilemmas are mostly developed in critically ill patients near the end of life. The point where the treating physician decides to withhold the intensive medical support represents a daily challenge on the current intensive care medicine. Considering patients' wishes in near-death events and their vision, through writing an advance medical directive (also known as Living Will), was introduced early in the developed western countries. On the other hand, it is not easy to talk about near-death events in many other regions of the world, mainly because of cultural and religious differences. Objectives: The study aimed to explore the current practice regarding near-death events in one of the Middle Eastern countries, particularly in Saudi Arabia. The main objectives of this study were measuring the involvement of patient's wishes in near-death medical decisions and analyzing the need and usefulness of encouraging the practice of writing advance medical directives in this demographic area. Methods: The data were obtained from a group of Saudi intensivists, who are dealing the most among other groups of physicians with near-death events, almost daily. They were affiliated with ten hospitals or intensive care units in Saudi Arabia. Data were collected during the period from March 2018 to July 2018. It was done based on participants' knowledge. Due to the low response rate, data were analyzed using descriptive statistics only. Results: A total of 51 physicians working in different intensive medical care units had responded to our survey. About 88% of them were male, 47% aged between 31 and 40 years of age; with different levels of experience (45% were residents, 35% worked as a senior registrars and 20% were consultants' intensivists). Although in Saudi Arabia, a (living will) be not considered legal writing, 31.35% of the respondents had seen many cases where patients openly discussed their near-death wishes with the family members. From the respondents, 84.31% believed that a living will tend to help in their decision-making, and 92.16% considered living wills helpful in making the final call regarding withholding/withdrawing the treatment. According to 72.55% of them, the presence of living wills would help in decreasing the near-death anxiety and depression among family members of a deceased patient and tend to help ease out the situation as they consider it as a final wish of the patient. Conclusion: It is concluded that the patient's wishes are essential in making an end-of-life decision; they should be represented by the patient and should also be respected by the clinical staff. However, more studies needed to explore the willingness of the general population in this culture to express their wishes and the best method to elicit these wishes should be sought, with respect to the cultural and religious beliefs and differences.

간호대학생의 사전연명의료의향서 태도에 미치는 영향

The purpose of this study was to identify the influence factors on the attitude of the advance medical directives by identifying the knowledge, attitude about advanced medical directives and biomedical ethics awareness among nursing students. The study was conducted using descriptive survey, among 193 nursing students from June 14 to 30, 2021. Responses were analyzed using SPSS WIN 25.0. Students’ knowledge, attitudes of the advance medical directives and biomedical ethics awareness were measured using a structured self-report questionnaires. Influencing factors emerged in the order of knowledge, biomedical ethics awareness, and legal knowledge on life-sustaining care advanced medical directives with an explanatory power of 38.1%. The results of this study provide basic data for developing an educational program to increase the knowledge of advance directives on life-sustaining health care and biomedical ethics awareness in order to cultivate attitudes toward advanced life-sustaining medical care among nursing students.

Trends and Patterns in the Public Awareness of Palliative Care, Euthanasia, and End-of-Life Decisions in 3 Central European Countries Using Big Data Analysis From Google: Retrospective Analysis.

BackgroundEnd-of-life decisions, specifically the provision of euthanasia and assisted suicide services, challenge traditional medical and ethical principles. Austria and Germany have decided to liberalize their laws restricting assisted suicide, thus reigniting the debate about a meaningful framework in which the practice should be embedded. Evidence of the relevance of assisted suicide and euthanasia for the general population in Germany and Austria is limited.ObjectiveThe aim of this study is to examine whether the public awareness documented by search activities in the most frequently used search engine, Google, on the topics of palliative care, euthanasia, and advance health care directives changed with the implementation of palliative care services and new governmental regulations concerning end-of-life decisions.MethodsWe searched for policies, laws, and regulations promulgated or amended in Austria, Germany, and Switzerland between 2004 and 2020 and extracted data on the search volume for each search term topic from Google Trends as a surrogate of public awareness and interest. Annual averages were analyzed using the Joinpoint Regression Program.ResultsImportant policy changes yielded significant changes in search trends for the investigated topics. The enactment of laws regulating advance health care directives coincided with a significant drop in the volume of searches for the topic of euthanasia in all 3 countries (Austria: −24.48%, P=.02; Germany: −14.95%, P<.001; Switzerland: −11.75%, P=.049). Interest in palliative care increased with the availability of care services and the implementation of laws and policies to promote palliative care (Austria: 22.69%, P=.01; Germany: 14.39, P<.001; Switzerland: 17.59%, P<.001). The search trends for advance health care directives showed mixed results. While interest remained steady in Austria within the study period, it increased by 3.66% (P<.001) in Switzerland and decreased by 2.85% (P<.001) in Germany.ConclusionsOur results demonstrate that legal measures securing patients’ autonomy at the end of life may lower the search activities for topics related to euthanasia and assisted suicide. Palliative care may be a meaningful way to raise awareness of the different options for end-of-life care and to guide patients in their decision-making process regarding the same.

The Concept of “Person” in the Italian Legislation on Informed Consent and Advance Healthcare Directives

The aim of the paper is that of investigating the concept of “person” in the context of Italian law on informed consent and advance healthcare directives (law n. 219/2017). The following paper will first consider the importance of the concept of “person” within bioethics; secondly it will exhibit how there are different levels of bioethics, and that on the discussion level of laws and regulations, concepts worthy of metaphysical and value references cannot be used, because they must be shared by everyone in a pluralistic society. I’ll then move on to discuss the law on informed consent and advance healthcare directives; first I’ll discuss the references to the Italian Constitution, showing that the implied concept of “person” is closely linked to the concepts of “equality” and “autonomy”, and finally I’ll discuss the particular case of minors and the protection that the law provides them.

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.

Development and Validation of a Questionnaire investigating the Knowledge, Attitudes and Practices of Healthcare Workers in the Field of Anesthesiology concerning the Italian Law on Advance Healthcare Directives: a Pilot Study.

Advance healthcare directives are legal documents, in which the patient, foreseeing a potential loss of capacity and autonomy, makes in advance decisions regarding future care and, in particular, end-of-life arrangements. In Italy, advance healthcare directives are regulated by the Law 219 of 22 December 2017. Objectives of the study were: i) to develop and validate a questionnaire dedicated to evaluate the knowledge of the Law in a sample of 98 anesthesiologists, and ii) to shed light on the process of health-related decision-making and its determinants (age, gender, doctor/training resident, religious beliefs). A second part of the survey not analyzed in the present study, aimed to assess, through two simulated clinical scenarios, how patient’ directives, relatives and the medical staff could influence physicians’ clinical decision. Overall Cronbach’s alpha coefficient of the questionnaire resulted 0.83. Three factors explaining up to 38.4% of total variance (communication and relationship with the patient; critical life-threatening situations and binding nature of the advance directive for the physician; and involvement of patients). Most of the doctors (58.7%) did not fully know the recent legislative provision. The lack of knowledge is critical in view of the specificity of the clinical area investigated (anesthesiology and intensive care), which has to cope with ethical issues. An adequate revision and implementation of the traditional curricula could help medical students and trainees develop the aptitudes and skills needed in their future profession. (www.actabiomedica.it)

Partnering With Title VI Directors to Put Survey Data to Use in Improving the Health and Well-Being of Native Elders

Through Title VI of the Older Americans Act, federally recognized American Indian tribes, Alaska Native villages, and Native Hawaiians are eligible for grant funding to promote elders’ access to nutritious food and address other community-specific needs, such as transportation. Title VI directors are often short-staffed and work flexibly and creatively to accomplish administrative tasks as well as direct care for elders. The National Resource Center on Native American Aging (NRCNAA) developed the “Identify our Needs: A Survey of Elders”, conducted with adults ages 55+ every three years since 1999, to help directors fulfill grant-required requirements to report on community needs assessment data about elders’ needed services and health status. Directors administer the survey; responses are then scanned and analyzed by NRCNAA, with a site-specific summary returned to directors, at no cost to the site. To learn more about how survey data are utilized, NRCNAA staff interviewed four Title VI directors from across the US in 2018. In addition to meeting the needs assessment requirement, directors use the data to seek resources and support, build collaborative relationships, and evaluate and build their programs. Conducting the survey has allowed for discussions with elders about dimensions of elder health, advanced medical directives, and medical power of attorney. Additionally, specific interventions have been designed to address needs identified by the survey, including diabetic foot care, yoga, and falls prevention. Through the survey, the NRCNAA is able to support many dedicated Title VI directors working to improve the health and well-being of Native elders.

The Last Gift: Advanced Healthcare Directives and the Family Members of Incapacitated Patients

Abstract This article will provide an overview of the law related to the withdrawal of treatment from incapacitated adult patients in Ireland and the role of family members in such decisions. This overview will touch on the best interests test, how the wishes of an incapacitated patient may be assessed, and the tension that may arise between medical assessments and the views of the family of the patient. Cases arising in the UK and the USA will be discussed where relevant. It will be argued that family members should be provided with more information, particularly with respect to Do Not Attempt Resuscitation orders. The article calls for greater discussion about death and dying, and greater use of advance healthcare directives.

A Challenge for Palliative Psychology: Freedom of Choice at the End of Life among the Attitudes of Physicians and Nurses.

This article considers a particular aspect of palliative psychology that is inherent to the needs in the area of attitudes concerning Advance Healthcare Directives (AHDs) among Italian physicians and nurses after the promulgation of Law No. 219/2017 on AHDs and informed consent in 2018. The study utilized a mixed-method approach. The group of participants was composed of 102 healthcare professionals (63 females and 39 males). The quantitative part utilized the following scales: Attitudes toward Euthanasia, the Religious Orientation Scale, the Balanced Inventory of Desirable Responding, and the Testoni Death Representation Scale. The results were mostly in line with the current literature, especially concerning a positive correlation between religiosity and the participants’ rejection of the idea of euthanasia. However, the qualitative results showed both positive and negative attitudes towards AHDs, with four main thematic areas: “Positive aspects of the new law and of AHDs”, “Negative aspects of the new law and of AHDs”, “Changes that occurred in the professional context and critical incidents”, and “Attitudes towards euthanasia requests.” It emerged that there is not any polarization between Catholics or religious people and secularists: Their positions are substantially similar with respect to all aspects, including with regard to euthanasia. The general result is that the law is not sufficiently understood, and so a quarter of the participants associate AHDs with euthanasia. Discussions on the opportunity for palliative psychologists to help health professionals to better manage these issues through death education courses are presented.

Posthumous sperm retrieval: a procreative revolution.

Aim Postmortem sperm retrieval with consequent artificial insemination has become a technically possible option for future use in assisted reproductive technology (ART). The authors have set out to discuss the social and ethical significance of posthumous sperm retrieval, and the laws currently in force in Italy, the United States and elsewhere. Methods International literature from 1997 to 2020 has been reviewed from Pubmed database, Google Scholar and Scopus, drawn upon American, Italian and international sources (an ethically acceptable solution can only be achieved through an overhaul of the laws currently in effect). One of the most contentious issues was about donor consent. In Italy, a donor's will to retrieve his sperm in the event of premature disappearance can be proven according to the Law 219/2017, through advance health care directives. Results A substantial increase, both in requests and protocols, was documented in the United States. In Italy, over the last two years, three rulings were issued concerning posthumous insemination. However, no official standardized protocols, guidelines or targeted legislation exist at the national level to regulate medical activity in that realm, whereas established laws often set implicit limitations. Conclusion Current legal frameworks appear to be inadequate, because in most cases they were conceived under conditions that have radically changed. The need for newly-updated regulatory frameworks to promptly bridge that gap is increasingly clear, if current social needs related to reproductive rights are to be met in the foreseeable future.