Robinson, J. et al. BMC Palliative Care. Published onle: 25 July 2016
Background: Government policy is a fundamental component of initiating change to improve the provision of palliative care at a national level. The World Health Organisation’s recognition of palliative care as a basic human right has seen many countries worldwide develop national policy in palliative and end of life care. There is increasing debate about what form comprehensive palliative care services should take, particularly in relation to the balance between acute and community based services. It is therefore timely to review how national policy positions the current and future role of the acute hospital in palliative care provision. The aim of this exploratory review is to identify the role envisaged for the acute hospital in palliative and end of life care provision in five countries with an ‘advanced’ level of integration.
Method: Countries were identified using the Global Atlas of Palliative Care. Policies were accessed through internet searching of government websites between October and December 2014. Using a process of thematic analysis key themes related to palliative care in hospital were identified.
Results: Policies from Switzerland, England, Singapore, Australia and Ireland were analysed for recurring themes. Three themes were identified: preferences for place of care and place of death outside the hospital setting, unnecessary or avoidable hospital admissions, and quality of care in hospital. No policy focused upon exploring how palliative care could be improved in the hospital setting or indeed what role the hospital may have in the provision of palliative care.
Conclusions: Palliative care policy in five countries with ‘advanced’ levels of palliative care integration focuses on solving the ‘problems’ associated with hospital as a place of palliative care and death. No positive role for hospitals in palliative care provision is envisaged. Given the rapidly increasing population of people requiring palliative care, and emerging evidence that patients themselves report benefits of hospital admissions, this area requires further investigation. In particular, a co-design approach to policy development is needed to ensure that services match the needs and wants of patients and families.
Results from a study of patients with a diagnosis of mild cognitive impairment or early dementia indicates that their outlook isn’t as dark as expected.
A group of scientists from the University of Kentucky’s Sanders-Brown Center on Aging asked 48 men and women with early dementia or mild cognitive impairment (MCI) a series of questions about their quality of life and personal outlook post-diagnosis.
Called the Silver Lining Questionnaire (SLQ), the instrument measures the extent to which people believe their illness has had a positive benefit in areas such as: improved personal relationships, greater appreciation for life, positive influence on others, personal inner strength and changes in life philosophy. The SLQ has been administered previously to patients with cancer diagnoses, but hasn’t been given to MCI/dementia patients, according to Gregory Jicha, MD, PhD, a professor at the Sanders-Brown Center on Aging and the study’s lead author.
Positive responses were even higher on certain scores, such as:
appreciation and acceptance of life
less concern about failure
self-reflection, tolerance of others, and courage to face problems in life
strengthened relationships and new opportunities to meet people.
The Transforming Care programme is based on the assumption that children, young people and adults with a learning disability and/or autism with behaviours described as challenging have the right to live satisfying and valued lives, and to be treated with dignity and respect. They should have a home within their community, be able to develop and maintain relationships, and get the support they need for a life that is healthy, safe and rewarding.
The Local Government Association is one of six national delivery partners (along with NHS England, the Department of Health, the Association of Directors of Adult Social Services, the Care Quality Commission and Health Education England) supporting delivery of the programme through sector led improvement, including regional support to Transforming Care Partnerships.
Centre for Addiction and Mental Health (Canada). Published online: 21 July 2016
More than one in three – an estimated 328,000 — Ontario students in grades seven to 12 report moderate-to-serious psychological distress, according to new survey results from the Centre for Addiction and Mental Health (CAMH). Girls are twice as likely as boys to experience psychological distress.
Screen time, social media use, and problem gaming on the rise
Survey results also showed that in 2015, almost two thirds (63 per cent) of students spent three hours or more per day of their free time in front of a TV or tablet/computer. The percentage of students who are screen-time sedentary has increased from 57 per cent since 2009, the first year of monitoring this behaviour.
At the same time, while the majority of students rate their health as excellent or very good (66 per cent), only 22 per cent of students met the recommended daily physical activity guideline, defined as a total of at least 60 minutes of moderate to vigorous activity per day, during the past seven days.
Failures in implementation of data sharing projects have eroded public trust. In the wake of NHS England’s decision to close down its care.data programme, Tjeerd-Pieter van Staa and colleagues examine how we can do better
Better use of large scale health data has the potential to benefit patient care, public health, and research. The handling of such data, however, raises concerns about patient privacy, even when the risks of disclosure are extremely small.
The problems are illustrated by recent English initiatives trying to aggregate and improve the accessibility of routinely collected healthcare and related records, sometimes loosely referred to as “big data.” One such initiative, care.data, was set to link and provide access to health and social care information from different settings, including primary care, to facilitate the planning and provision of healthcare and to advance health science.1 Data were to be extracted from all primary care practices in England. A related initiative, the Clinical Practice Research Datalink (CPRD), evolved from the General Practice Research Database (GPRD). CPRD was intended to build on GPRD by linking patients’ primary care records to hospital data, around 50 disease registries and clinical audits, genetic information from UK Biobank, and even the loyalty cards of a large supermarket chain, creating an integrated data repository and linked services for all of England that could be sold to universities, drug companies, and non-healthcare industries. Care.data has now been abandoned and CPRD has stalled. The flawed implementation of care.data plus earlier examples of data mismanagement have made privacy issues a mainstream public concern. We look at what went wrong and how future initiatives might gain public support.
My job as an intensive care nurse has made me realise that life is fleeting, fragile and unpredictable
“There’s a lot people don’t know about dying.
Most people are terrified of it. We don’t talk about it, and when we do it’s with hushed voices and delicate words. Most of us are blissfully ignorant until it forces us to take notice of it, whether it be because of a terminal illness, a fatal car accident or a loved one snatched from our lives. We are woefully unprepared for it. What are we supposed to do? What should we say? You never imagine it happening to you.
It is a sensitive subject, because deep down we know that it is the one thing in all our lives that is inevitable. Death does not discriminate, and it makes every single one of us equal. I was terrified of it too, but after seven years as an intensive care nurse I am familiar enough with death to be able to see it differently to most.
Death is ugly. It’s not glamorous, and most people do not close their eyes and slip away peacefully at home in their beds, surrounded by loving family. The death I see comes with plastic tubes and cannulas shoved into oozing blood vessels, giant machines that hiss, click and shriek alarms as they mechanise the life of a human being, and a rainbow of bad smells. It comes with cheap fabric curtains, stiff white sheets and sunken, fluid-swollen skin. It comes with an unexpected phone call that drags you from your bed into cold and uncomfortable waiting rooms at 3am. Even if it is expected, it still comes with an icy shock and a deep, gut-wrenching sadness.”