BMC Palliative Care最新文献

Background: In contemporary approaches to incurable illness, death and dying, health care systems constitute the dominant context. However, an expanding body of literature recognizes these experiences as principally social events, thereby placing greater emphasis on the social wellbeing of individuals confronted with incurable illness. This shift has prompted greater interest in the potential role of the wider community and social professionals in palliative care. Therefore, this study focuses on the social wellbeing of patients with incurable illness in the palliative phase, as well as that of their primary family caregivers.

Methods: In-depth interviews were conducted with 14 participants (patients and primary family caregivers). Qualitative content analysis was used to identify themes and meaning.

Results: This study demonstrates that meaningful relationships, acknowledgement of one's situation and the ability to determine one's own level of involvement in society are essential for the social wellbeing of patients and family caregivers confronted with incurable illness. Relationships with lay persons and participation in society play a crucial role in this context, while relationships with and support from health care providers are also relevant. This is embedded within the broader societal context, reflecting how society as a whole approaches and empowers patients and families facing incurable illness. For most participants, asking for help and being cared for was neither self-evident nor straightforward, which may challenge ideas that advocate for greater community involvement in end-of-life care.

Conclusion: Lay persons constitute an essential component in fostering the social wellbeing of individuals living with incurable illness and their families. Furthermore, the quality of communication and relationships with healthcare providers, employers, and institutions, along with the prevailing societal attitudes towards incurable illness, caregiving, death, and dying, is of considerable significance and should be given careful attention.

Background: End-of-life care is an essential component of cancer care. Good end-of-life care improves quality of life for the dying individuals and their loved ones. This study aimed to compile a list of quality indicators (QIs) endorsed by experts, for assessing the quality of end-of-life care for cancer patients in Malaysia.

Methods: Eligible QIs were first identified through a scoping review, which formed the basis for a five-round online modified Delphi survey that was undertaken to reach expert panel agreement. Firstly, the relevance of each QI was rated by a panel comprising healthcare professionals (HCPs) in oncology and palliative care, caregivers, and patient advocates using a 9-point Likert scale. Secondly, the feasibility of extracting these indicators from medical charts was evaluated using the same rating scale; this was assessed only by HCPs due to their familiarity with the documentation practices. QIs with a median score ≥ 7 and with ≥ 75% of rating ≥ 7 were considered endorsed.

Results: Of the 47 experts invited, 39 participated (response rate 83.0%): 31 HCPs, five caregivers and three patient advocates. From an initial list of 64 indicators, 31 were endorsed across 10 domains, including measures related to: symptom management such as pain, dyspnoea, and other physical symptoms (e.g., assessment of delirium and agitation) (n = 11/64); psychological and social aspects of care (e.g., depression assessment) (n = 2/64), treatment modalities (e.g., antiemetics for chemotherapy) (n = 1/64); hospital and community palliative care services (e.g., home care visits) (n = 5/64); advanced care planning (e.g., resuscitation preference) (n = 2/64); continuity and coordination of care (e.g., multidisciplinary team consultation) (n = 5/64); place of death and care (e.g., preferred place of death) (n = 4/64); and medications for respiratory secretion (n = 1/64). Some unendorsed indicators included those from the domains of hospitalisation (e.g., intensive care unit admission) (n = 3/64) and spiritual care (e.g., spiritual needs assessment) (n = 2/64).

Conclusions: A comprehensive set of 31 indicators was identified. These QIs can be used for evaluating the quality of end-of-life care received by cancer patients and serve as a foundation for future quality improvement initiatives. Further studies are needed to validate these QIs in real-world clinical practice and assess the feasibility and reliability of extracting these indicators from medical charts.

Background: Children with palliative care conditions and their families have complex care needs. In Norwegian municipalities, designated coordinators facilitate cooperation between health and social care services to ensure a holistic approach to meeting these needs. However, information is limited concerning how coordinators perform their duties and the factors influencing their work performance.

Aim: To explore coordinators' experiences and perceptions of factors influencing their work performance in relation to children's palliative care (CPC) in municipalities.

Methods: Semi-structured interviews were conducted with 11 coordinators for children in palliative care and analysed using a reflexive thematic analysis approach.

Results: Both internal and external factors influenced the coordinator's work performance, and they experienced a range of barriers in their efforts to achieve holistic care. Four themes were generated: 'random knowledge on children's palliative care', 'the abstract concept of coordination', 'striving to unite the fragmented whole' and 'aiming for tailored coordination'. A lack of training and experience in CPC is widespread among the coordinators. Additionally, the municipal systems seem inadequately developed to address the needs of children in palliative care and their families.

Conclusion: Strengthening coordination in municipalities for children in palliative care and their families requires that coordinators receive systematic training in CPC and further development of their support systems.

Background: Compassion is often described in literature as an indication of quality of care, and it is imperative in the healthcare context, more specifically in the practice of palliative care. This scoping review aimed to identify assessment tools for compassion available in the context of palliative care and describe the psychometric characteristics of the identified assessment tools.

Methodology: A Systematic Review of Literature, a Scoping review. A search was performed in PubMed, CINAHL, MedicLatina, Scopus, Web of Science, and PsycARTICLES computerized databases on March 9, 2022. The participants included were adults, the concept considered was "compassion assessment instruments," and all studies conducted in the context of palliative care were considered. The protocol was obtained from The Joanna Briggs Institute.

Results: A total of 1371 publications were identified. Of these, only five fulfilled the inclusion criteria. The information was collated in tabular form. Of the five publications selected, only one comprised the original development of the scale, where the other four included studies on palliative care, where the scales were used. It was possible to obtain the original publications in which the scales were developed. Therefore, five instruments for assessing compassion in palliative care were identified: "Patient Assessment of Physician Compassion"; "Sinclair Compassion Questionnaire"; "Compassion from Others Scale"; "Santa Clara Brief Compassion Scale"; "Compassion Scale".

Conclusion: Only one compassion assessment scale has been developed for palliative care. In addition, of the other four instruments, only one was developed in the healthcare context. This research also indicates that the assessment of compassion in palliative care is recent. The only instrument developed in the context of palliative care was created in 2021, and the first article to describe the assessment of compassion in palliative care was developed in 2018. It also concluded that the assessment of compassion in the field is important, whether from the perspective of the patient or from the perspective of the professional. The instruments have good or excellent internal consistency.

Background: Residential aged care is increasingly becoming the final place of care for many older adults in high-income countries. For many families, grief begins well before the death of their loved one, emerging as early as the time of entry into residential care. This grief often continues as they witness ongoing decline and deterioration and extends into bereavement following the resident's death. While caregiver grief is well recognised, there is limited understanding of how these experiences unfold across this full journey and the specific challenges families face at each stage. This study explored the grief, loss and bereavement needs of family caregivers of people who are about to enter, living in, or have died in a residential aged care facility.

Methods: This qualitative study used semi-structured interviews and focus groups with family caregivers and residential aged care staff. Data were managed using NVivo and analysed using reflexive thematic analysis approach.

Findings: Thirty eight participants (n = 28 staff members; and n = 10 family caregivers) from nine residential aged care services participated in the study. Five themes developed from the data: (i) grief manifests early and is associated with the loss of caregiver role; (ii) grief and emotional strain arise in transition, creating support needs; (iii) timely communication and tailored care shapes grief experience at end-of-life; (iv) inclusive after-death rituals support meaningful closure; and (v) relational support and community sustain families in grief. Participants highlighted the complexity of grief and loss experienced by family caregivers throughout their loved one's journey in residential aged care, from admission to death.

Conclusions: Establishing culturally sensitive, timely, and open conversations about death and dying while fostering strong and supportive relationships between staff, caregivers, and residents is crucial in helping family caregivers navigate their grief, loss, and bereavement.

Background: The need for children's palliative care and end-of-life services is increasing. However, there is limited evidence to inform health and social care professionals about parental preferences for place of end-of-life care for their child, or on factors influencing families in deciding on their preferred place of death for their child. The aim of this study was to explore factors which influence parental decision-making in relation to place of end-of-life care for children with life-limiting, life-threatening conditions, with respect to experiences of end-of-life care in different settings (i.e., home, hospital, hospice).

Methods: This is a qualitative study. Semi-structured interviews were conducted with 20 bereaved parents (14 mothers and six fathers) of children with life-limiting, life-threatening conditions. Parents were purposively recruited from six sites inclusive of hospital, home and hospice settings across the Republic of Ireland and Northern Ireland. Interviews were digitally recorded, transcribed verbatim and thematically analysed.

Results: One overarching theme, "child first and foremost", and three sub-themes of "ideal versus reality: home as place for end-of-life care"; "secure but not settled: hospital as place for end-of-life care"; and "home away from home: hospice as place for end-of-life care" were developed.

Conclusions: Selecting a place of end-of-life care and death for a child is a complex and challenging decision for parents. Important factors which influence parental decision-making around choosing home, hospital, or hospice for a child's place of end-of-life care included: considering what would be best for their child; home was most often the first preference for parents, but this could change; that hospital was often the default choice due to lack of communication with parents about their options; and the family unit as a whole, including siblings, was an important factor when parents were making the decision. Our findings highlight that an individualised approach to supporting family's decision-making about place of end-of-life care for their child is required. Early advance care planning could be utilised as an opportunity to begin these conversations.

Background: Globally, evidence indicates that most people prefer to receive care and die at home, provided high-quality care is available. However, systemic and logistical challenges often prevent this outcome. Palliate is a nurse-led intervention aiming to address these barriers, supporting lay-carers in administering end-of-life subcutaneous medications to their loved ones, through training, written guidance, and documentation.

Aim: To explore the perceptions and experiences of patients, carers, and healthcare professionals regarding the acceptability of the Palliate intervention, using the Theoretical Framework of Acceptability (TFA), including perceived barriers and opportunities to its implementation.

Methods: A qualitative study was conducted using semi-structured interviews with healthcare professionals, patients, carers, and policy-makers, informed by the TFA. Data were analysed thematically using deductive analysis.

Results: Thirty participants, including people with a diagnosis of advanced illness, carers, and a range of healthcare professionals involved in end-of-life care, provided perspectives on the acceptability of the intervention in end-of-life care. Participants described potential benefits, including improved symptom management, reduced waiting times for medication, and increased empowerment for families to support care at home. Concerns were raised about carer burden, emotional responsibility, and the need for professional oversight. Some participants spoke from direct experience of administering or supporting the intervention in practice, providing insights into both its practical value and the challenges of implementation.

Conclusion: While the Palliate intervention was generally viewed as acceptable and potentially beneficial, its broader implementation requires careful consideration. Its acceptability was conditional on carers receiving clear training, ongoing professional support, and being able to participate voluntarily. These findings offer new insights into the boundaries of lay caregiving and have implications for the implementation of family-administered end-of-life care within health systems. Further research is needed to evaluate its safety, impact, and feasibility in diverse contexts before wider adoption can be recommended.

Background: Hospice is specialized medical care that strives to provide comfort to dying patients. To our knowledge, no study has examined the percentage of young adult LGBTQ + patients with cancer who enrolled in hospice and circumstances that surround enrollment/non-enrollment.

Methods: A single healthcare system, 4000 + self-reported LGBTQ + database of patients with cancer identified young adult decedents (18-39 years old at death) to report the percentage who died with hospice, the conversations that preceded hospice enrollment, time-on-hospice, and circumstances that surrounded the deaths of those not enrolled.

Results: From the database, 43 decedents were identified with a median age at death (range) of 33 years old (20, 39 years). Twenty had self-identified as gay/lesbian, and 23 as bisexual. Twenty-nine decedents (67% (95% CI: 51, 81%)) were enrolled in hospice (3 not enrolled and died unexpectedly; 11 with unknown hospice outcome). Conversations that preceded enrollment discussed (1) limited cancer therapeutic options with worsening end-of-life symptoms and how hospice could help ("discussed… decline and how patient would not want to die hooked up to machines"); (2) medical staff's acknowledgement of same sex spouse/life partners ("[She] is here with her wife"); (3) the inclusion of the birth family in end-of-life discussions, especially if the decedent had been single ("Her father met us… this was difficult news for him to hear."). Four of 18 decedents with known date of hospice enrollment died 3 or fewer days after enrollment.

Conclusions: Most young adult LGBTQ + decedents with cancer receive hospice services with thoughtful and inclusive conversations that precede enrollment. For some, time-on-hospice appears limited.