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.
The acute hospital palliative care team at London North West University Healthcare NHS Trust provides specialist palliative care advice and supports end-of-life care across the trust. We have experienced a year-on-year increase in demand for our services and have previously managed this by recruiting more clinical nurse specialists. The appointment of two assistant practitioners to support end-of-life care has allowed us to look at a different model of care and new ways of working to meet increasing demands on our service. To read the full article, log in using your MPFT NHS OpenAthens details
NHS England will increase funding for children’s hospices to as much as £25 million a year, chief executive Simon Stevens announced today.
Medical advances mean the NHS can help seriously ill children and young people with more complex health issues live longer, more fulfilling lives.
Recently, there has been dialogue on improving the provision of palliative care in the post-Liverpool care pathway era. Current literature includes recommendations for new ways of thinking that can reshape and align palliative care services with the principles of public health ... To read the full article, log in using your MPFT NHS OpenAthens details.
For the year 2018, the French government plans a revision of bioethics laws, including certainly the recent Claeys-Leonetti law introducing the right to deep and continuous sedation at the request of palliative patients and prohibiting euthanasia for end-of-life patients. Because there is no published data on medical staff opposition to a deep and continuous palliative sedation request under Claeys-Leonetti law, we believe this report may give insight into physicians’ decision making, into the role of criteria for prudent practice, and thus contribute to the bioethical debate. Open Access Article
Background:
Acute hospitals provide a high proportion of end-of-life care but some families experience poor communication with clinical staff.
Aim:
To evaluate the use of the Family's Voice diary communication tool across nine healthcare settings. To read the full article, log in using your MPFT NHS OpenAthens details.
To explore current practice and the role taken by UK memory services in helping carers of people with dementia prepare for the end of life.. To read the full article, log in using your MPFT NHS OpenAthens details.
Although Alzheimer disease and other dementias are life limiting, only a minority of these patients or their proxy decision makers participate in advance care planning. We describe end‐of‐life care preferences and acute care and hospice use in the last 6 months of life for persons enrolled in a comprehensive dementia care management program.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Many people do not discuss end of life preferences with those closest to them, although this can be beneficial to the individual and wider population. This study evaluated a community intervention to promote end of life preparation and discussion among people who are currently well. Open Access Article
Free access. To evaluate the time course of “taking to bed” at the end of life and determine whether it differs according to age, sex, and condition leading to death.
GP surgeries will now be able to display a 'daffodil mark' as a sign of commitment to improving end of life care, as part of a new partnership between the Royal College of GPs and the terminal illness charity Marie Curie.
The mark, synonymous with the charity, is based on a new set of criteria called the Daffodil Standards – a set of eight quality improvement statements designed to support primary care teams in delivering care to patients living with an advanced, serious illness or at the end of their lives, and their loved ones.
Caring and supporting patients at the end of their lives comes with numerous challenges for healthcare professionals. One of the main challenges is how to communicate effectively with patients and those important to them. To read the full article, log in using your MPFT NHS OpenAthens details.
Activity participation may support clients in palliative care to maintain dignity and quality of life. Literature and policy documents state that occupational therapists should be part of the team in palliative care but provide limited guidance on how interventions should be employed. Thus, the aim was to describe occupational therapists’ experiences of enabling activity for seriously ill and dying clients. Open Access Article
The purpose of this study is to understand the significance and the role of the gratitude received from P/R for palliative care health professionals (PCHP). Open Access Article
The article discusses some important issues to consider when responding to emotions experienced by patients in palliative care. Topics mentioned include the need for health experts to correctly interpret a patient's body language to understand the full extent of what they are feeling, how district nurses can help patients to regulate their emotions to improve their wellbeing, and the importance of being aware that a patient will often be experiencing a range of emotions at any one time. To read the full article, log in using your NHS OpenAthens details.
This report begins to highlight and challenge professional reluctance to engage in conversations with patients about uncertainty, treatment ceilings, resuscitation status and death. It offers some ‘mythbusters’ to get physicians thinking and signposts to tools and educational resources to support physicians and other healthcare professionals.
the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them.. To read the full article, log in using your MPFT NHS OpenAthens details.
Carers of patients with palliative care needs require careful assessment and support to undertake their role effectively. The carer component of palliative care is embedded in complex situations that necessarily focus on the patient. To read the full article, log in using your MPFT NHS OpenAthens details.
Norway has one of the lowest home death rates in Europe. However, it is the health authorities´ ambition to increase this by facilitating palliative care at home. The aim of this study was to achieve more insight, through home care nurses and general practitioners, of conditions that facilitate or hamper more time at home and more home deaths for patients with terminal disease and short life expectancy.
A Massive Open Online Course (MOOC) on death and dying was conducted to open the dialogue around death and dying. In one activity, participants were asked to engage with language and to think of alternative words (or euphemisms) that are used to describe death.
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University Hospitals of North Midlands has launched an appeal for members of the public to return any medical equipment no longer required. The Trust is seeking the return of Mckinley T34 syringe pumps, which are predominantly used for patients receiving care at the end of life. The cost of replacing these pieces of equipment could amount to more than £50,000 a year.
Conversations about end of life choices can be difficult. However, a Staffordshire GP wants us to have these conversations to make sure we are all prepared for when someone dies.
As part of Dying Matters Week (13-19 May 2019), the NHS in Staffordshire is encouraging people to plan ahead and start a conversation with family members. By planning in advance, less pressure will be placed on loved ones at the end of someone’s life.
Having a terminal or life-limiting illness can increase a person’s risk of taking their own life. Find out how to have compassionate conversations and offer support
When Robin Walton was a nursing student on a London hospital ward in the 1960s, a patient climbed out of the window one day and jumped to his death.
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Policy Briefing. Intense media interest and a number of high-profile court cases have kept the assisted suicide debate in the public eye. Login using your SSSFT NHS OpenAthens details for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you requesting.
There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of people with intellectual disabilities, particularly those in disability community living services. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
The nature and quality of end-of-life care received by adults with intellectual disabilities in out-of-home, non-institutional community agency residences in Western nations is not well understood. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
Few services are available to support rural older adults living at home with advancing chronic illness. The objective of this project was to pilot a nurse-led navigation service to provide early palliative support for rural older adults and their families living at home with advancing chronic illness.
Open Access Article
A new room which will provide privacy and dignity for patients at the end of their life has been opened by the Trust which runs Shropshire’s two acute hospitals to mark Dying Matters Week.
Carol Bagnall, Matron on Ward 27, and Bernie Moore, whose wife, Trish, was cared for by the Trust, open the Swan Room.
The new Swan Room has been opened on Ward 27 at the Royal Shrewsbury Hospital (RSH). It is the fourth Swan Room to open at The Shrewsbury and Telford Hospital NHS Trust (SaTH), which runs RSH and the Princess Royal Hospital (PRH) in Telford. There are also plans for two more rooms at PRH this year.
Compassion and collaborative practice are individually associated with high quality healthcare. When combined in a compassionate collaborative care (CCC) practice framework, they are reported to improve health, strengthen care provision, and control health costs. Little is known about how to integrate and measure CCC, yet it is fundamentally applied in palliative and end-of-life care settings. This study aimed to identify quality indicators of CCC by systematically reviewing and synthesizing the current state of the palliative and end-of-life care literature.
Open Access Article