Pain management in German hospices: a cross-sectional study.

BACKGROUND AND OBJECTIVES: Pain management is a necessary component of palliative care as most patients suffer from pain during the final phase of life. Due to the complex causation of pain in the last phase of life, it is important to utilize methods other than pharmacotherapeutic options in order to achieve adequate pain control. As little is known about treatment of pain in German hospices, a nationwide survey was conducted. MATERIALS AND METHODS: All German hospices (259) were contacted by post in June 2020 and asked to participate in an anonymous cross-sectional survey. RESULTS: A total of 148 (57%) German hospices took part in the survey. A broad variety of medication is used in the hospice setting. Metamizole is the most commonly used non-opiod analgesic , hydromorphone the most commonly used opioid, and pregabalin is the most commonly prescribed co-analgesic drug. The pain medication is usually prescribed as an oral slow-release substance. Standardized treatment schemes are rare among the responding hospices. Most of the respondents also use complementary treatment options, such as aroma (oil) therapy or music therapy, in the treatment of pain. Palliative sedation is used by nearly all responding hospices if all other treatment options fail. CONCLUSION: This survey provides an overview of the treatment options for pain management in German hospices. A broad variety of pain medication is used. Compared to international literature, it is debatable whether such a large variety of different types of pain medication is necessary, or whether a reduction in the type of medication available and the use of standardized treatment schemes could benefit everyone involved.

Hematologic Malignancy: Who Cares in the End? A Retrospective Cohort Study of Markers of Quality End-of-Life Care.

BACKGROUND: Early palliative care is increasingly used in solid organ malignancy but is less established in patients with hematologic malignancy. Disease-related factors increase the demand for hospitalization, treatment, and supportive care in patients with hematologic malignancy. The terminal phase of illness in patients with hematologic malignancy can be difficult to predict, resulting in complexities in establishing a standard for quality end-of-life care. METHODS: This is a retrospective single-center cohort study of adult patients with hematologic malignancy who died between October 2019 and July 2022. Patients were identified, and disease characteristics, therapy, and outcomes were extracted from medical records. Descriptive statistics are reported and univariate analyses were performed across a range of factors to assess for associations. RESULTS: A total of 229 patients were identified, with a median age of 77 years and 35% female. In the final 30 days of life, 65% presented to the emergency department, 22% had an ICU admission, 22% had an invasive procedure, 48% received cytotoxic therapy, 61% received a RBC transfusion, and 46% received a platelet transfusion. Use of intensive chemotherapy was particularly associated with hospitalization and ICU admission. A total of 74% referred to palliative care, with a median time from referral to death of 13 days. Of these patients, one-third were referred within the last 5 days of life. In terms of place of death, 54% died in the acute hospital setting and 30% in hospice, with a median hospice length of stay of 4 days. CONCLUSIONS: These findings highlight the need for further research into quality indicators for end of life in hematologic malignancy and earlier integration of specialist supportive and palliative care in both inpatient and outpatient settings.

Medicina familiar, principios bioéticos y final de la vida en Colombia / Family Medicine, Bioethical Principles and End of Life in Colombia

Introducción: La medicina familiar, dentro de su enfoque biopsicosocial, acoge la valoración integral de cada individuo en su curso de vida, donde es indispensable integrar todos los principios bioéticos para brindar una atención adecuada, oportuna y humanizada. El abordaje del especialista en medicina familiar sobre el final de vida debe estar ligado a estos aspectos, lo que permite ampliar la relación clínica desde el paciente hasta su núcleo familiar y su equipo en salud. Objetivo: Discutir los principios bioéticos desde una perspectiva integrativa a partir de un recorrido por los principales apartados legales que se han desarrollado en Colombia desde la sentencia C-239 de 1997, en relación con el derecho a morir dignamente. Métodos: Se realizó una revisión narrativa mediante la búsqueda en PubMed, Elsevier, Scielo y la normativa del contexto colombiano. Conclusiones: La disponibilidad de la información permite tener claridad sobre los conceptos al final de vida y el quehacer de los profesionales de la salud en esta etapa, que permita brindar al paciente y a su familia información clara y alternativas en su manejo integral, que dignifique la relación médico-paciente-familia-equipo de salud(AU)

Introduction: Family medicine, within its biopsychosocial approach, welcomes the comprehensive assessment of each individual in his or her life course, where it is essential to integrate all bioethical principles to provide adequate, timely and humanized care. The approach of the family medicine specialist at the end of life should be linked to these aspects, which allows extending the clinical relationship of the patient to the family nucleus and the health team. Objective: To discuss bioethical principles from an integrative perspective based on the review of the main legal paragraphs that have been developed in Colombia since the C-239 ruling of 1997 in relation to the right to die with dignity. Methods: A narrative review was carried out through searches in PubMed, Elsevier, SciELO and in the normativity of the Colombian context. Conclusions: The availability of information allows clarity about the concepts at the end of life and the work of health professionals at this stage, which allows providing the patient and family with clear information and alternatives in their comprehensive management, which dignifies the doctor-patient-family-health team relationship(AU)

Black Caregivers' Symptom Management, Cultural, and Religious Experiences With Home Hospice Care.

CONTEXT: Informal Black or African American (Black/AA) caregivers are at high risk for caregiver burden due to both greater caregiving responsibilities and unmet needs. However, there has been minimal research on the challenges Black/AA caregivers face after hospice enrollment. OBJECTIVES: This study seeks to address this knowledge gap by applying qualitative methods to understand Black/AA caregivers' experiences around symptom management, cultural, and religious challenges during home hospice care. METHODS: Data from small group discussions with 11 bereaved Black/AA caregivers of patients who received home hospice care were qualitatively analyzed. RESULTS: Caregivers struggled most with managing patients' pain, lack of appetite, and decline near end of life (EoL). Cultural needs (e.g., knowing their language, having familiarity with foods) were perceived as not on top of mind for many Black/AA caregivers. However, there was a concern of stigma around mental health preventing care recipients from sharing their mental health concerns and seeking resources. Many caregivers relied on their personal religious networks rather than services provided by hospice chaplains. Lastly, caregivers reported increased burden during this phase of caregiving but were satisfied with the overall hospice experience. CONCLUSION: Our results suggest that tailored approaches that target mental health stigma in the Black/AA community and reduce caregiver distress around end of life symptoms may improve hospice outcomes among Black/AA hospice caregivers. Hospice spiritual services should consider offering services complementary to caregivers' existing religious networks. Future qualitative and quantitative studies should examine the clinical implications of these results in terms of patient, caregiver, and hospice outcomes.

End-of-Life Doulas: Documenting Their Backgrounds and Services.

This is an exploratory study to document the demographic characteristics, backgrounds, and services provided by trained and certified INELDA end-of-life doulas. Like birth doulas, end-of-life doulas represent a divergent, yet complementary form of care for dying persons. The purpose of end-of-life care is to facilitate comfort of the dying person and their closest family members. Surveys were completed by 618 end-of-life doulas regarding their demographic characteristics, employment backgrounds, services, and their experiences providing end of life care to dying persons and their closest family members. Follow-up qualitative interviews were also conducted with a subset of 39 respondents who completed the original survey. Results show that trained doulas are largely white (91.4%), female (90.4%), hold a Bachelor's (32.3%) or Masters (32.4%) degree, and are employed outside of their EOLD work (70.1%). Qualitative data details services provided to dying persons and family members in addition to the benefits and challenges of working with traditional healthcare settings.

Interventions for Grieving and Bereaved Informal Caregivers: A Scoping Review of the Canadian Literature.

Background: The palliative approach to care is playing a larger role in the healthcare of older adults in Canada. Within (hospice) palliative care, informal caregivers play a crucial role as part of the interdisciplinary care team. Ensuring high quality palliative care includes providing effective grief and bereavement supports for them. Objective: This study aimed to identify current interventions addressing the grief and bereavement experiences of informal caregivers of geriatric patients in the Canadian (hospice) palliative/end-of-life care realm. Methods: A scoping review was undertaken using Arksey and O'Malley's framework. Seven electronic health and social science databases were searched. In addition, several stakeholder organizations' websites were reviewed to identify grey literature sources. Interventions that took place in Canada, were in English, and explored grief and bereavement supports for informal caregivers in an adult/geriatric (hospice) palliative care setting were included. After full text review, data were extracted and charted. Major themes were established following thematic content analysis. Results: Within a total of 18 sources, three themes were identified: (1) Classification of intervention, (2) Format of intervention, and (3) Intervention target. Method of delivery and type of intervention for grief and bereavement supports were aligned with the international literature. There is a need for large-scale evaluations of interventions and informal caregivers should be engaged in this process. Practitioners should be encouraged to direct bereavement interventions toward grieving caregivers, and to collaborate with them to improve access to these interventions. Policy makers should provide additional funding for grief interventions for informal caregivers. Conclusions: It is important to better understand the needs of informal caregivers experiencing grief and bereavement. Interdisciplinary collaborations will be necessary to develop, evaluate, and scale future interventions.

Patient Goals in Hospice Cancer Pain Management: A Total Pain Case Scenario.

Evidence-based clinical practice guidelines and hospice agency policies and procedures direct nursing assessment and interventions for the care of persons with cancer-related pain. Guidelines assert that pain should be assessed from a holistic perspective that considers physical, psychological, social, and spiritual aspects. In addition, guidelines maintain that hospice nurses should ascertain patient goals for pain management. Assessment and documentation of goals other than pain intensity goals is an area of nursing practice that has not been developed. Without inclusion of personally meaningful goals in pain assessment instruments, such goals cannot be routinely or consistently included in the hospice care plan. To address the assessment of pain and patient goals for pain management, this scenario-based article merges theoretical knowledge about pain from concept analyses with clinical guideline recommendations. Although research is needed to develop pain goal assessment tools, nurses can use this empirically based approach for asking about goals and integrating them into the plan of care.

[Palliative and Hospice Care in Nursing Homes: Discrepancies Between Theoretical Framework and Everyday Practice]. / Palliativversorgung und hospizliche Begleitung in der stationären Pflege zwischen theoretischem Konzept und Praxisalltag.

OBJECTIVES: Despite the existence of a legislative framework, palliative care and hospice support in nursing homes vary widely. Although most nursing homes have palliative care concepts by now, they are rarely integrated into everyday practice. This study aims to examine differences in palliative and hospice care and to determine the causes of discrepancies between theoretical framework and everyday practice. METHODS: Based on a pilot project, in depth structural and process analyses of two nursing homes in urban and rural areas in North Rhine-Westphalia were conducted. In addition, three nursing homes of an extended group of providers as well as an expert advisory board was included to minimize (provider-) specific characteristics and to expand findings. RESULTS: Although the proportion of palliative residents and their average age was comparable, analyses revealed significant differences between the nursing homes regarding the palliative length of stay (213.2 days vs. 88.6 days) as well as the mortality rate of palliative residents among all death cases (26% vs. 63.6%). Furthermore, internal processes within the nursing homes differed vastly despite similar concepts and procedural instructions. As a result, palliative care formally started at an earlier stage in nursing home X. Besides that, the identification of palliative care situations, as well as communication, organizational processes and the inclusion of cooperation partners, took place without fixed structures and was based on the subjective handling of staff members in both facilities. CONCLUSIONS: It turns out to be challenging for nursing homes to implement theoretical framework into everyday practice. To facilitate this process, aside from practicable assessments, defined responsibilities and organizational support, financing concepts at health policy level need to be established.

Cuidados paliativos da enfermagem no cenário pandêmico conforme a Teoria de final de vida pacífico / Palliative care of nursing in the pandemic scenario according to the pacific end-of-life theory / Cuidados paliativos de enfermería en el escenario de pandemia según la teoría del terminal de vida del pacífico

Objetivo: descrever a perspectiva assistencial da equipe de enfermagem em uma Unidade de Terapia Intensiva para os pacientes diagnosticados com COVID-19 e fora de possibilidades terapêuticas, a luz da Teoria de Final de Vida Pacífico. Métodos: estudo qualitativo com suporte da Teoria de Final de Vida Pacífico, em uma Unidade de Terapia Intensiva adulto do Norte do Brasil. A coleta no segundo semestre de 2020 obteve nove profissionais, contando com roteiro semiestruturado e posterior análise de três etapas. Resultados: inter-relação entre "Não sentir dor" e "Experiência de Conforto", uma polissemia de perspectivas quanto a "Experiência de dignidade e respeito" e "Estar em paz", já a "Proximidade com outros significativos" foi totalmente abalada. Considerações finais: preceitos da humanização alinharam-se a teoria, porém foi um problema a falta de padronização quanto a avaliação de dor. A exclusão dos outros significativos impossibilitou o final de vida pacífico para os pacientes com COVID-19.

Objective: to describe the care perspective of the nursing team in an Intensive Care Unit for patients diagnosed with COVID-19 and out of therapeutic possibilities, in the light of the Peaceful End of Life Theory. Methods: qualitative study supported by the Theory of Peaceful End of Life, in an adult Intensive Care Unit in Northern Brazil. The collection in the second half of 2020 obtained nine professionals, with a semi-structured script and subsequent analysis of three stages. Results: interrelationship between "Not feeling pain" and "Experience of Comfort", a polysemy of perspectives regarding "Experience of dignity and respect" and "Being at peace", whereas "Proximity to significant others" was totally affected. Finalconsiderations: humanization precepts were in line with the theory, but the lack of standardization regarding pain assessment was a problem. Excluding significant others made peaceful end-of-life impossible for COVID-19 patients.

Objetivo: describir la perspectiva del cuidado del equipo de enfermería en una Unidad de Cuidados Intensivos a pacientes diagnosticados con COVID-19 y fuera de posibilidades terapéuticas, a la luz de la Teoría del Final de Vida Tranquilo. Métodos:estudio cualitativo sustentado en la Teoría del Final de la Vida en Paz, en una Unidad de Cuidados Intensivos de adultos en el Norte de Brasil. La colección del segundo semestre de 2020 obtuvo nueve profesionales, con un guión semiestructurado y posterior análisis de tres etapas. Resultados: interrelación entre "No sentir dolor" y "Experiencia de Confort", polisemia de perspectivas sobre "Experiencia de dignidad y respeto" y "Estar en paz", mientras la "proximidad a otras personas significativas" se vio totalmente afectada. Consideraciones finales: los preceptos de humanización estaban en línea con la teoría, pero la falta de estandarización en cuanto a la evaluación del dolor fue un problema. La exclusión de otras personas importantes hizo imposible el final de la vida pacífica para los pacientes con COVID-19.

Evaluation of ICU end-of-life and bereavement care by relatives of deceased ICU patients.

INTRODUCTION: The aim of the study was to evaluate the quality of ICU 'end-of-life care' as well as the current bereavement support strategies in a large tertiary hospital, reported by bereaved family members of patients who were admitted to ICU who received bereavement support. METHODS: A cross-sectional single site study was conducted, in which two (online) questionnaires (euroQ2 and a customized version of the ARREVE questionnaire) were sent to relatives of deceased ICU patients at one timepoint, ranging from 1 week to ± 16 months after a follow-up phone call, which is part of the standard care procedure. RESULTS: We sent 139 questionnaires and 95 questionnaires were returned (response rate 68.3%). Overall, the quality of care was rated as good, with excellence in 'concern and caring by ICU staff' towards the patient, consideration of the needs of the family members, ease of getting information and the completeness of information about what is done. Points for improvement include the presence at bedside, consistency of information and the overall quality of information given by the physicians. The follow-up call 2-3 months after the loss was appreciated and beneficial for the family members. Point of improvement was asking if they wanted to have a scheduled phone call or a spontaneous one at the beginning of the follow-up call, since participants can have a preference for a planned (22.4%) or unplanned (28.2%) call. However, 49.4% of the participants had no preference. CONCLUSION: In general, the quality of care, and 'end-of-life care' in the ICU was good, as assessed by relatives of deceased ICU patients. To optimize the 'quality of end-of-life care' in the ICU, improvements in terms of information provision and possibilities to visit the patient can be made.

Modelos de cuidados a cuidadores familiares de ancianos al final de la vida / Models of Care for Family Caregivers of Elderly Persons at the End of Life

Introducción: El final de la vida de un anciano es un proceso de vida, cuyo cuidado es protagonizado por el cuidador familiar. Con frecuencia los cuidados profesionales se enfocan hacia la persona que más expresa sus necesidades humanas insatisfechas. Sin embargo, aunque el cuidador familiar expresa sus problemas de salud, los cuidados se muestran insuficientes y desapegados de la teoría. Objetivo: Diseñar un modelo teórico de cuidados al cuidador familiar de anciano al final de la vida. Métodos: Estudio cualitativo de teoría fundamentada, de enero del 2017 a enero del 2020. Las poblaciones de estudió la conformaron cuatro especialistas y cuatro cuidadores familiares que vivieron la experiencia del cuidado de un anciano al final de la vida. La muestra se determinó por un muestreo no probabilístico y saturación teórica, y quedó conformada por cuatro especialistas y cuatro cuidadores familiares que vivieron la experiencia del cuidado. Se utilizó la entrevista en profundidad y análisis de discurso como métodos empíricos, lo cual permitió la construcción del paradigma codificado. Resultados: El modelo representa la lógica ideal en la ejecución de acciones en la práctica de enfermería con la aplicación del método científico en el contexto domiciliario durante el cuidado al cuidador familiar de anciano al final de la vida. Conclusiones: Se describen las relaciones de coordinación y subordinación entre los elementos del modelo que se constituyen en acciones consecutivas y coherentes durante la práctica de enfermería para el cuidado al cuidador familiar de anciano al final de la vida(AU)

Introduction: The end of life of an elderly person is a life process whose care corresponds mainly to the family caregiver. Professional care is often focused on the person who most expresses his or her unmet human needs. However, although the family caregiver expresses his or her health problems, care is insufficient and detached from theory. Objective: To design a theoretical model of care for the family caregiver of the elderly at the end of life. Methods: A qualitative grounded theory study was carried out from January 2017 to January 2020. The study populations consisted of four specialists and four family caregivers who lived the experience of caring for an elderly person at the end of life. The sample was determined by nonprobabilistic sampling and theoretical saturation, and finally consisted of four specialists and four family caregivers who lived the caregiving experience. In-depth interview and discourse analysis were used as empirical methods, which allowed the construction of the coding paradigm. Results: The model represents the ideal logic in the performance of actions as part of nursing practice through the application of the scientific method in the home setting during the care for the family caregiver of the elderly person at the end of life. Conclusions: The coordination and subordination relationships among the elements of the model are described. Such elements are the consecutive and coherent actions during the nursing practice for the care of the family caregiver of the elderly person at the end of life(AU)

Hospice Referral in Advanced Cancer in New Jersey.

The need for hospice care is increasing in the United States, but insufficient lengths of stay and disparity in access to care continue. Few studies have examined the relationship between the presence of symptoms and hospice referral. The study measured the association between hospice referral and demographic characteristics and the presence of pain and depression in a cohort of people hospitalized with metastatic cancer in New Jersey in 2018. This study was secondary analysis of the 2018 New Jersey State Inpatient Database. The sample was limited to adult patients with metastatic cancer. Descriptive statistics evaluated the composition of the sample. Generalized linear modeling estimated the effect of pain and depression on incidence of hospice referral in a racially and economically diverse population. Absence of pain resulted in lower odds of receiving a referral to hospice upon discharge (adjusted odds ratio [AOR], 0.44; 95% confidence interval [CI], 0.40-0.49; P = .00). Likewise, an absence of depression also resulted in decreased odds of a hospice referral (AOR, 0.85; 95% CI, 0.76-0.96; P = .008). Compared with Whites, Blacks (AOR, 0.86; 95% CI, 0.76-0.97; P = .00) and Hispanics had significantly lower odds of receiving a hospice referral (AOR, 0.84; 95% CI, 0.72-0.96; P = .01). Patients with a primary language other than English, there were significantly lower odds of receiving a hospice referral (AOR, 0.85; 95% CI, 0.73-0.99; P = .03). Patients with pain and depression had increased hospice referrals. Disparities persist in hospice referral, particularly in Black and Hispanic cases and those without a primary language of English.

Exploring the role of expectancy in older US participants' response to an accelerated resolution therapy intervention for prolonged grief disorder.

Accelerated resolution therapy (ART) is a psychotherapy for the treatment of prolonged grief disorder (PGD) defined as severe, enduring longing for the lost person. Currently, ART lacks examination of intrapersonal processes, like expectancy, as behavioural mechanisms for action. Therefore, the purpose of this paper was to present the findings on participants' treatment expectations of ART for PGD and then discuss potential hypotheses for future testing. This study was a primary qualitative descriptive analysis of prospectively collected interview data (collected 2017-2019) accrued as part of a randomised, wait-list controlled clinical trial in bereaved hospice family caregivers in the United States. The sample included 29 former informal caregivers who were at least 1-year post death of their care recipient. They were primarily female, older (67.4 ± 7.1 years), and a little over half (n = 18) had been married to their care recipient. Thematic analysis resulted in three distinct themes with six sub-themes: The role of knowledge in expectations (sub-themes uncertainty, prior knowledge); The role of personality in expectations (sub-themes openness, positive affect); and Expecting a process (sub-themes cognitive processes, affective processes) which described the interaction of person and process in shaping expectations of our intervention. An across theme analysis of the specificity of the participants' expectations uncovered that knowledge and personality inform expectations of ART and that individuals who verbalise a process for recovery tend to be very specific in their expectations. Three hypotheses for testing are put forward and implications for practice, research and policy discussed.

Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care.

BACKGROUND: The 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care. OBJECTIVE: The purpose of this study was to examine the effect of pediatric concurrent vs standard hospice care on end-of-life care continuity among Medicaid beneficiaries. METHODS: Using national Medicaid data, we conducted a quasi-experimental designed study to estimate the effect of concurrent vs standard hospice care to improve end-of-life care continuity for children. Care continuity (i.e., hospice length of stay, hospice disenrollment, emergency room transition, and inpatient transition) was measured via claims data. Exposures were concurrent hospice vs standard hospice care. Using instrumental variable analysis, the effectiveness of exposures on care continuity was compared. RESULTS: Concurrent hospice care affected care continuity. It resulted in longer lengths of stays in hospice (ß = 2.76, P < .001) and reduced hospice live discharges (ß = -2.80, P < .05), compared to standard hospice care. Concurrent care was not effective at reducing emergency room (ß = 2.09, P < .001) or inpatient care (ß = .007, P < .05) transitions during hospice enrollment. CONCLUSION: Our study provides critical insight into the quality of care delivered for children at end of life. These findings have policy implications.

Effects of an Interprofessional Spiritual Care Education Project.

Spiritual care is a critical aspect of end-of-life care that is often undervalued and underaddressed by hospice health care teams. The purpose of this quality improvement project was to determine if the implementation of an evidence-based spiritual care protocol changed practices regarding the initial assessment of spiritual needs, frequency of reassessment of needs, the inclusion of spiritual interventions, and staff perspectives on spiritual care. The preimplementation and postimplementation data evaluation displayed increased compliance with spiritual needs assessment within 5 days of admission, increased reassessment intervals, an increase in the percentage of interactions that included spiritual interventions, and improved staff perspectives on spiritual care. The findings of the study support implementation of a spiritual care protocol in hospice patients.

Assessment and Clinical Decision-Making During Imminent Death in Hospice Music Therapy.

Assessment is a critical aspect of treatment planning, and while there exist standards for facilitating music therapy assessments in a variety of clinical settings, no such standards exist for music therapists in hospice and palliative care. This gap in knowledge, which limits music therapists' ability to provide patients and caregivers best practices promoting supported movement through the dying process, becomes particularly problematic when assessing patients who are imminently dying with a 24-72 hour prognosis. To further develop and define assessment and clinical decision-making processes used by music therapists in hospice and palliative care, the authors used a constructivist grounded theory and situational analysis methodology to analyze interviews of 15 hospice music therapists. The resulting theoretical model describes an ongoing process of assessment and clinical decision-making shaped by participants' individual epistemologies. Epistemologies were comprised of 5 ways of knowing, which were termed experiential, personal, musical, ethical, and integral, and provided participants critical foundations for their practice. The results support a development of a model for reflective practice as well as continued research on epistemological foundations of clinical practice.

Dignity of the patient--family unit: further understanding in hospice palliative care.

OBJECTIVES: This study aimed to explore the construct of dignity of the patient-family dyad in hospice palliative care, as well as its influencing factors from the perspective of hospice palliative care staff. METHODS: A qualitative descriptive study was conducted with 34 staff members from a residential hospice in Amherst, USA, and an inpatient palliative care unit in Winnipeg, Canada, between September 2013 and December 2016. Data were collected through semistructured interviews and were analysed using the thematic analysis approach. RESULTS: Findings suggested that staff members viewed dignity as something that is reciprocally supported within the patient-family unit. Themes including respect, comfort, privacy, being informed and quality family time were common in the conceptualisation of dignity in patients and families; themes of being human and being self, autonomy and living with dignity were uniquely used to conceptualise patient dignity. Themes solely constituting family dignity included being included in care, being capable and being treated fairly. Cultural considerations, environmental factors, teamwork and patient/family-staff relationship were the factors identified by staff members that affected dignity in hospice palliative care. CONCLUSION: Findings of this study provide insights into the development of strategies to support the dignity of the patient-family unit in hospice palliative care.

Family caregivers' experiences of end-of-life care in the acute hospital setting. A qualitative study.

BACKGROUND: Acute hospital settings are generally not considered adequate places for end-of-life care, but terminally ill patients will continue to die in acute medical wards in the unforeseeable future. AIM: The aim of this study was to investigate family caregivers' experiences of end-of-life care in an acute community hospital in Iceland. METHODS: Fifteen in-depth qualitative semi-structured interviews were conducted with participants who had been primary caregivers. The transcribed interviews were analysed using thematic content analysis. FINDINGS: Findings indicated that the acute hospital setting is not a suitable environment for end-of-life care. Effective communication and management of symptoms characterised by warmth and security give a sense of resilience. Three main themes emerged: (1) Environmental influences on quality of care; (2) Communication in end-of-life care; (3) The dying process. Each of the themes encompassed a variety of subthemes. CONCLUSIONS: Findings suggest that effective communication is the cornerstone of quality of care in the acute hospital environment and essential for establishing a sense of security. The severity of symptoms can deeply affect family caregivers' well-being. Acknowledging and appreciating the meaning of respect and dignity at the end-of-life from family caregivers' perspective is vital.