Advance care planning, end of life

BACKGROUND: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. AIM: To develop a multidimensional international palliative care goals model in dementia for use in practice. DESIGN: International Delphi study integrating consensus and evidence from a meta-qualitative study...

This case report provides insights into the physiotherapy management of a 12-year-old male with Duchenne muscular dystrophy (DMD). DMD is a devastating genetic disorder characterized by progressive muscle degeneration and weakness. Skeletal muscle degeneration is induced by a genetic disorder. It is a common X-linked condition that causes hypertrophy of the calves and proximal muscular weakness in children. It frequently results in early mortality, wheelchair confinement, and delays in motor development...

BACKGROUND: Performing clinical trials in palliative cancer care is known to be challenging. OBJECTIVE: This study aimed to explore how patients with advanced cancer experienced their participation in a randomised, placebo-controlled trial while receiving palliative cancer care at end of life. METHOD: A descriptive design with a qualitative approach was used. 14 patients who had participated in the 'Palliative-D' study were interviewed. Data were analysed using content analysis...

OBJECTIVE: We wanted to examine the healthcare use and non-elective activity in the UK population of expected deaths over an 1-year period to highlight and examine the reasons for variation. We did this to identify areas to focus interventions or resources on to reduce unnecessary emergency care use at the end of life. METHODS AND ANALYSIS: We assembled a data set of approximately 400 000 adults who died in England in the financial year 2021/22 (April 2021-March 2022)...

BACKGROUND: Disparities in advance care planning (ACP) among older Latinos necessitate targeted interventions to enhance engagement and knowledge in end-of-life care. This study aimed to evaluate the effectiveness of a resource-efficient, culturally tailored educational intervention in improving ACP readiness and knowledge among older Latino adults in the community. METHODS: A quasi-experimental pretest-posttest design was used to assess the impact of the intervention...

Light chain amyloidosis is a plasma-cell disorder with a poor prognosis. It is a progressive condition, causing worsening pain, disability, and life-limiting complications involving multiple organ systems. The medical regimen can be complex, including chemotherapy or immunotherapy for the disease itself, as well as treatment for pain, gastrointestinal and cardiorespiratory symptoms, and various secondary symptoms. Patients and their families must have a realistic awareness of the illness and of the goals and limitations of treatments in making informed decisions about medical therapy, supportive management, and end-of-life planning...

BACKGROUND: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time. AIM: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers-and if, when, how, and why these experiences change over time. DESIGN: A qualitative longitudinal interview study...

BACKGROUND: Many of the challenges in advanced care planning (ACP) conversations are linked to the waxing and waning progress of serious illnesses. Conversations with patients about future medical care decisions by a surrogate decision maker have historically been left until late in the patient's disease trajectory. These conversations often happen at a time when the patient is already very ill. The challenge in effective early ACP and serious illness conversations is to create a situation where patients appreciate the link between current and future medical care...

Background: Heart failure (HF) is a progressive, life-limiting illness for which palliative care (PC) is considered standard of care. Among patients that do receive PC, consultation tends to occur late in the illness course. Objective: Our primary aim was to examine patient factors associated with receiving PC in HF. Secondarily, we sought to determine factors associated with early PC encounters. Design: This was a retrospective cohort study of U.S. Veterans with prior hospitalization who died between January 1, 2011 and December 31, 2020...

OBJECTIVES: The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts. METHODS: In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist...

BACKGROUND: Emergency department (ED) clinicians are more frequently providing care, including end-of-life care, to older people. OBJECTIVES: To estimate the need for ED end-of-life care for people aged ≥65 years, describe characteristics of those dying within 48 hours of ED presentation and compare those dying in ED with those dying elsewhere. METHODS: We conducted a retrospective cohort study analysing data from 177 hospitals in Australia and New Zealand...

BACKGROUND: Documenting goals of care in the electronic health record is meant to relay patient preferences to other clinicians. Evaluating the content and documentation of nurse and social worker led goals of care conversations can inform future goals of care initiative efforts. METHODS: As part of the ADvancing symptom Alleviation with Palliative Treatment trial, this study analyzed goals of care conversations led by nurses and social workers and documented in the electronic health record...

BACKGROUND: Precise prognostic information, if available, is very helpful for guiding treatment decisions and resource allocation in patients with non-cancer non-communicable chronic diseases (NCDs). This study aimed to systematically review the existing evidence, examining prognostic models and factors for identifying end-of-life non-cancer NCD patients. METHODS: Electronic databases, including Medline, Embase, CINAHL, Cochrane Library, PsychINFO and other sources, were searched from the inception of these databases up until June 2023...

OBJECTIVE: The number of patients with end-stage kidney disease (ESKD) requiring renal replacement therapy in Sri Lanka is significantly rising. Most of these patients depend on haemodialysis, carrying a significant burden on their family caregivers. To develop care and support for both the patient and their family caregiver, it is crucial to understand how caregivers experience their caregiving situation. Therefore, this study aimed to explore family caregivers' experiences of burden and coping when caring for a family member receiving haemodialysis in the Sri Lankan context...

STUDY BACKGROUND: The practice of acute care nurses is shaped by organizational factors such as lack of privacy, heavy workloads, unclear roles, lack of time, and lack of specific policies and procedures. We know little about the social and organizational structures and processes that influence nurses' uptake of valuable patient-centered discussions like advance care planning (ACP). ACP is beneficial for patients, their substitute decision makers, and healthcare providers. PURPOSE: To describe the operational, organizational, and societal influences shaping nurses' ACP work in acute care settings...

AIM: To explore the role of health communication in Shared Decision-Making (SDM) between nursing staff and older people in the community setting. BACKGROUND: Society and healthcare services are marked by an exponentially ageing population, leading to a significant proportion of patients being older adults with highly demanding care needs. Scientific literature supports shared decision-making as a process that engages patients in their care. However, the increasing use of technology and the consequences of the COVID-19 pandemic have influenced how nurses communicate with older patients...

BACKGROUND: Advance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people's attitudes towards ADs...

PURPOSE OF REVIEW: Heart failure (HF) is characterized by significant symptoms, compromised quality of life, frequent hospital admissions, and high mortality, and is therefore well suited to palliative care (PC) intervention. This review elaborates the current PC needs of patients with HF across the spectrum of disease, including patients who undergo advanced HF surgical therapies, and reviews the current data and future directions for PC integration in HF care. RECENT FINDINGS: Patients with chronic HF, as well as those who are being evaluated for or who have undergone advanced HF surgical therapies such as left ventricular assist device or heart transplantation, have a number of PC needs, including decision-making, symptoms and quality of life, caregiver support, and end-of-life care...

OBJECTIVE: We examined the associations among advance directives (ADs) completion, coping, uncertainty in illness, and optimism and pessimism in patients with end-stage liver disease (ESLD). BACKGROUND: Although associations among ADs, coping, and uncertainty have been studied in patients with other life-limiting illnesses, these concepts have not been studied together in patients with ESLD. PATIENTS AND METHODS: Patients were recruited at 2 health care institutions as part of a larger prospective study...

BACKGROUND: There is a dearth of studies evaluating the utility of reporting prognostication among nursing home (NH) residents with cancer. OBJECTIVE: To study factors associated with documented less than six-month prognosis, and its relationship with end-of-life (EOL) care quality measures among residents with cancer. METHODS: The Surveillance, Epidemiology, and End Results linked with Medicare, and the Minimum Data Set databases was used to identify 20,397 NH residents in the United States with breast, colorectal, lung, pancreatic, or prostate cancer who died between July 2016 and December 2018...