Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-related outcomes and healthcare expenditures between those who received home-based paediatric palliative care and standard care. The quality of life and caregiver burden for patients receiving home-based paediatric palliative care were also tracked over the first year of enrolment to evaluate the service’s longitudinal impact.
Open Access Article
When receiving palliative care, patients and their families experience altered life situations in which they must negotiate challenges in daily life, increased care and new roles. With limited time, they also experience emotional changes that relate to their uncertain future. Transitions experienced in such situations are often studied by focusing on individual aspects, which are synthesized in the following study. The aim was to conduct a qualitative meta-synthesis to explore the experiences patients and their families gain during transitions in palliative care circumstances.
Open Access Article
Asking patients with palliative care needs about their end-of-life (EoL) preferences is widely acknowledged as an important aspect of EoL care. However, the issue of how to ask patients these questions has not been fully explored. Most prior studies in this area do not differentiate between patients' pragmatic preferences and ideal preferences, and between preferences concerning place of care (PoC) and place of death (PoD). To read the full article, log in using your SSOTP NHS OpenAthens details. SSSFT - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Implications for practice and research:
> Unmet learning needs exist among staff supporting people with intellectual disabilities at end of life and in bereavement, which should be addressed within care settings.
> There is evidence that partnership working between intellectual disability and palliative care services can enable the end-of-life care needs of people with intellectual disabilities to be more effectively assessed and addressed.
> Further studies are required to explore staff experiences in supporting people with intellectual disabilities in these sensitive issues.
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The aim of this study was to determine if community-based palliative care provided to people dying from non-cancer conditions was associated with reduced hospital costs in the last year of life and how this compared with people dying from cancer.
Open Access Article
The Auditing Care at the End of Life (ACE) instrument contains 27 questions captured across 6 domains, which are indicative of quality end-of-life care for nursing home residents.
Open Access Article
This study explored the lived experiences of clinical nurse specialists who can prescribe independently in their role of providing support to patients with palliative care needs within the community. Part 1 of this study examined how the study was carried out; this second part explores the findings. The nurses reported that being able to prescribe enabled them to provide seamless, holistic care, which gave patients faster access to medicines, especially at weekends when their GP was unavailable.
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Parkinson’s disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and – if needed – the quality of dying. However, providing palliative care to persons with PD involves specific challenges.
Open Access Article
Staff cannot always give the time they want to patients nearing the end of life. A nurse-led initiative at one trust ensures specially trained volunteers are there to support families and patients in the final moments of life
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This is an excellent, fascinating and highly accessible read on spirituality in hospice care for professionals in health and social care and the wider public. It presents rich and creative narratives on spiritual interactions with patients and families from a diverse range of experienced hospice healthcare professionals and volunteers.
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Marie Curie publishes emergency admissions briefing
The charity argues that emergency admissions in the final year of life can often be avoided with adequate care in the community is provided
We say we need to boost NHS community services so there are enough beds and staff to ensure good end of life care.
Despite UK national guidance on care after death, it is clear that the bereaved family can experience distress while waiting for the patient's death to be verified. This distress can escalate if there is a delay in verification....It is hoped that this guidance will help to avoid delays that may cause additional distress to grieving families. This article sets out the rationale for the guidance, as well as discussing outstanding concerns and proposals for future considerations
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The need to ‘fight’ and remain positive could be having a negative effect on people living with cancer, a new report from Macmillan Cancer Support has revealed.
To identify instruments that could assess the quality of dying and death and their psychometric properties. To assess the methodological quality of studies on measurement properties.. To read the full article, log in using your SSSFT NHS OpenAthens details. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
In 2011, an expert-developed proxy-based instrument for the assessment of symptom burden in palliative patients, the Palliative Symptom Burden Score (PSBS), was implemented at the Specialised Palliative Care Unit of the University Medical Centre in Dusseldorf, Germany. The present study investigated its feasibility, acceptance and psychometric properties.
Open Access Article
Few studies have specifically assessed the scope, nature and challenges of palliative and end-of-life care in rural general practice. These knowledge gaps limit the development of evidence-based policies and services for patients in the last months of life. This study aimed to explore the perspectives of general practitioners (GPs) and other stakeholders on rural GPs’ involvement and challenges in providing palliative and end-of-life care in regional Australia. Open Access Article
In this overview we discuss the palliative psychiatric care of older people towards the end of life. We briefly consider ethics, dementia care, delirium, depression, anxiety, grief and physician-assisted suicide. We also discuss hope, dignity, spirituality and existentialism. We hope that this article will encourage clinicians to reflect on the effects of terminal illnesses on the mental health of dying people and the current provision of palliative psychiatric care. . To read the full article, log in using your MPFT NHS OpenAthens details.