Decision making at the end of life

BACKGROUND: Palliative sedation (PS) is a therapeutic intervention employed to manage severe and refractory symptoms in terminally ill patients at end of life. Inconsistencies in PS practice guidelines coupled with clinician ambiguity have resulted in confusion about how PS is best integrated into practice. Understanding the perspectives, experiences, and practices relating to this modality will provide insight into its clinical application and challenges within the palliative care landscape...

A lack of consensus resulting in severe conflicts is often observed between the stakeholders regarding their respective roles in end-of-life (EOL) decision-making in the ICU. Since the burden of these decisions lies upon the individuals, their opinions must be known by medical, judicial, legislative, and governmental authorities. Part of the solution to the issues that arise would be to examine and understand the views of the people in different societies. Hence, in this systematic review, we assessed the attitudes of the physicians, nurses, families, and the general public toward who should be involved in decision-making and influencing factors...

BACKGROUND: Older people with frailty are susceptible to sudden and rapid deterioration, so discussing their wishes and preferences for care at the end of life should be a priority. However, frailty is often not considered or recognised, which impedes patient-centred decision-making. AIM: To explore the views and perceptions of senior healthcare professionals regarding the usefulness of the Clinical Frailty Scale (CFS) in identifying frailty; whether a CFS score of severe frailty leads senior healthcare professionals to recognise that the person is likely to be approaching the end of life; and whether a CFS score of severe frailty prompts senior healthcare professionals to have conversations about advance care planning and end of life care with patients...

BACKGROUND: Acutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions. METHODS: This is a cluster randomized trial with 12 hospital units...

BACKGROUND: Live kidney donation is used to treat end-stage renal disease, but it poses risks and decision-making challenges for donors. This study examines kidney donors' long-term quality of life (QOL). METHODS:  We conducted a cross-sectional survey on kidney donors between 1982 and 2018. We used the Short Form-36 (SF-36) (Arabic version) to measure the donors' QOL. Out of 60 donors contacted, 44 agreed to participate and responded. Demographic information, donor-recipient relationships, and specific questions about the donation were collected and analyzed...

BACKGROUND: Barriers to accessing hospice and palliative care have been well studied. An important yet less researched area is why people approaching the end-of-life decline a referral when they are offered services. This review focused on synthesising literature on patients in the last months of life due to a cancer diagnosis who have declined a referral to end-of-life care. METHODS: Six academic databases were systematically searched for qualitative literature published between 2007 and 2021...

The first act of assisted suicide in Italy was recently carried out. This event is an absolute novelty for the country, affected by recent legislative changes aimed only at introducing the right to interrupt health treatments and, therefore, carry out exclusively omissive end-of-life acts. These normative provisions lay their foundations in a cultural context centered on the protection of the right to life and health; however, the cases that have occurred over time, including the famous story of DJ Fabo, have led the Constitutional Court to re-evaluate these dictates, introducing in 2019 the right to resort to assisted suicide procedures within well-defined areas, including incurability of the condition, the serious suffering of the individual and the retained ability to stand trial...

CONTEXT: Reliable and valid measures are critical in accurately assessing outcomes of advance care planning interventions (ACP) for end-of-life (EOL) decision-making. OBJECTIVES: To develop measures of preparedness for EOL decision-making for patients with end-stage renal disease and their surrogates (an exemplar population) METHODS: In this 3-phase study, Phases 1 and 2 included a cross-discipline concept analysis of the preparedness construct, item generation for patient and surrogate scales (82 items), evaluation of content validity and readability, cognitive interviewing, and item reduction...

Objectives: To evaluate physicians' opinions concerning continuous deep sedation until death (CDSUD) and implementation of Claeys-Leonetti; a law intended to be applicable to all patients, but without a specific framework for children thus giving rise to ethically and legally complex situations. The secondary objective was to identify if physicians' characteristics could influence their opinions. Study Design: This was a national, multicenter, noninterventional cross-sectional survey from January 30, 2020, until March 1, 2020...

BACKGROUND: Infants born at extremely preterm gestational ages are typically admitted to the neonatal intensive care unit (NICU) after initial resuscitation. The subsequent hospital course can be highly variable, and despite counseling aided by available risk calculators, there are significant challenges with shared decision-making regarding life support and transition to end-of-life care. Improving predictive models can help providers and families navigate these unique challenges. OBJECTIVE: Machine learning methods have previously demonstrated added predictive value for determining intensive care unit outcomes, and their use allows consideration of a greater number of factors that potentially influence newborn outcomes, such as maternal characteristics...

Voluntary cessation of hemodialysis is a common cause of death in dialysis patients, often occurring related to an alteration in their quality of life. At the same time, psychiatric disorders such as depression or anxiety are common and often underestimated among these patients, that accentuate the suffering and complicate compliance with dialysis. In this paper some psychopathological conditions will be addressed, as well as the question of the patient's ambivalence towards dialysis and the clinical and ethical dilemma of caregivers: respect the patient's choice to stop treatment or keep them alive at all costs? A multidisciplinary approach, including palliative care, is essential to support the reflection and make balanced decisions while respecting patient autonomy...

OBJECTIVE: Nurses inevitably encounter patients who require care aimed at limiting therapeutic effort (LTE), even though many of them are not prepared to provide support to individuals with terminal illnesses and their families. One of the contexts in which the LTE is considered is the intensive care unit (ICU). This review is to describe the competencies for the execution of a nursing professional role in the LTE in the ICU. METHOD: An integrative review of the literature published between the years 2010 and 2023...

BACKGROUND: Provision of palliative care in chronic heart failure (CHF) can support complex decision-making, significantly improve quality of life and may lower healthcare costs. AIMS: To examine whether healthcare costs differed in terminal admissions according to the adoption of a palliative approach. DESIGN: Retrospective review of medical records and costing data for all admissions resulting in death from CHF (July 2011 to December 2019), analysed as two groups (2011-2016 and 2016-2019) because of background changes in costings...

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention, has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study was to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making and , and identify costs and supportive conditions for the implementation of the intervention...

AIM: This study aimed to evaluate changes over time in cause of death and making end-of-life decisions in preterm infants. METHODS: A follow-back survey was conducted of all preterm infants who died between September 2016 and December 2017 in Flanders and Brussels, Belgium. Cause of death was obtained from the death certificate and information on end-of-life decisions (ELDs) through an anonymous questionnaire of the certifying physician. Results were compared with a previous study performed between August 1999 and July 2000...

BACKGROUND: End-stage osteoarthritis of the knee (OAK) is often treated by total knee arthroplasty (TKA). This intervention can significantly improve quality of life. However, many patients are dissatisfied with the outcome of surgery. One of the factors related to dissatisfaction is the of lack integration of patients' preferences, habits and values that are not addressed by physicians. To develop realistic expectations, affected patients need evidence-based information. Our aim was to explore the information needs of patients with OAK to support the development of decision aids and consent forms to promote informed decision-making...

INTRODUCTION: Despite mounting consensus that end-of-life (EOL) care for patients with cancer should focus on improving quality of life, many patients continue to receive aggressive, disease-oriented treatment until death. Within this group, patients with increased frailty may be at higher risk of adverse treatment-related outcomes. We therefore examined the relationship between degree of frailty and receipt of aggressive EOL care among Medicare-insured patients with cancer in Ohio. MATERIALS AND METHODS: From the Ohio Cancer Incidence Surveillance System (OCISS) linked with Medicare claims, we identified patients diagnosed with breast, colorectal, lung, or prostate cancer who died between 2012 and 2016...

AIM: To explore the role of family meetings for individuals living with dementia and their family caregivers. DESIGN: Integrative review. METHODS: We conducted searches in the Cochrane Library, PubMed, CINAHL, and Embase databases (up to December 2022). Additionally, an ancestry search strategy was employed to supplement the retrieval of published literature related to family meetings or family conferences for people with dementia and their family caregivers...

Dying in the United States is characterized as: medicalized, depersonalized, high technology, fragmented with frequent transitions among care settings, burdensome to patients and families, driven by efficiency and effectiveness, and lacking in key areas, for example, access to palliative care and adequate pain and symptom treatment. Patients and families are often left with a choice of two extremes: vitalism or utilitarian pessimism (utilitarianism). The Catholic Church, however, rejects both of these extremes, and Catholic social teaching (CST) at end of life focuses on ordinary-extraordinary treatments/means, a culture of life and human dignity, accompaniment and community, and caring for whole persons through the end of life...

Navigating antibiotics at the end of life is a challenge for infectious disease (ID) physicians who remain deeply committed to providing patient-centered care and engaging in shared decision making. ID physicians, who often see patients in both inpatient and outpatient settings and maintain continuity of care for patients with refractory or recurrent infections, are ideally situated to provide guidance that aligns with patients' goals and values. Complex communication skills, including navigating difficult emotions around end-of-life care, can be used to better direct shared decision making and assist with antibiotic stewardship...