The charity Sue Ryder has called for there to be a ‘national conversation’ about death and greater dialogue between health and care professionals and families about what to expect, and what they can do, as the death of someone close approaches. This follows new research, launched as part of the charity’s ongoing #FacingLossTogether campaign. (Sue Ryder)
Heidi Travis the chief executive said: “death is an inevitable part of all our lives, and yet in modern society […] it has become a taboo subject that many of us find difficult to broach.”
The charity’s survey reveals a significant number of people struggle with uncertainty about what to do when someone close to them is dying. The research among 1,000 bereaved adults in UK found that:
- over 40% of those that had questions or worries wanted to know what physical or mental changes they should expect when someone close to them was near death.
Other key questions and worries included:
- whether to bring up difficult issues with their dying family member or friend before the end of their life (21%)
- how to make them more comfortable (58%)
- whether they should die in a more comforting environment than a hospital ward (18%)
- the last words they should say to them (40%)
- who should be there in the final moments (36%).
The full press release is here
Further information and a factsheet: When a loved one is nearing death, what can you expect and what should you do? can be found on the Sue Ryder website
BBC News: Call to end ‘taboo’ of talking about death
A survey conducted by Marie Curie and the Nursing Standard demonstrates how pressures on the NHS are compromising care for terminally ill patients.
It found that 94% of nurses who participated in the survey (n over 600) have witnessed dying patients ‘stranded’ in hospital as delays in funding have meant they were unable to receive care in the community.
Among the survey’s key findings were:
- Almost two-thirds (65%) of nurses say they do not have sufficient time to provide high quality care for patients who are dying, a similar proportion to those who answered the survey last year.
- Staffing levels (38%) and time constraints (25%) were the main barriers identified to providing high quality care, followed by a lack of care provision in the community, including care homes, peoples’ homes and hospices.
The full press release is available on the Marie Curie website
The full results of the survey are published in latest issue of the Nursing Standard which is available to Rotherham NHS Staff here
New research published in the BMJ outlines the benefits of early access to palliative care for terminally ill patients. The cohort study which examined the experiences of cancer patients in Yorkshire found that patients who were able to access palliative care earlier, experienced improved quality of life.
The study led by Lucy Ziegler, University of Leeds and Yorkshire Cancer Research questioned if there is an optimal point when a patient should begin to receive palliative care, when the focus switches from trying to treat disease to managing symptoms.
While research in the US suggests that should happen about six months before death. But in the UK, most advanced cancer patients only start palliative care seven weeks before they die.
Full story available from The University of Leeds The benefits of early access to palliative care
The full abstract can be read in the BMJ
The full text article can be downloaded here
Related story: The Independent Too few cancer patients are getting end of life care
The Office for National Statistics and Public Health England have released statistics for Cancer diagnoses in England for 2016.
The main points are:
- The number of new cases of cancer in England continues to rise and, in 2016, there were 303,135 cancers registered (excluding non-melanoma skin cancers); this is an increase of 3,212 from 2015 and is equivalent to 828 new cases being diagnosed each day during 2016.
- More cancers were registered in males (155,019) than females (148,116) and across the majority of cancer sites, more males were diagnosed with cancer than females; this is a persistent feature of the data, as reported in previous cancer registration years.
- The age-standardised incidence rates for newly diagnosed cancers were 663.4 per 100,000 males and 541.1 per 100,000 females; age-standardised rates for newly registered cases of cancer (incidence) were higher in males than females, which is a repeating trend of the data, as outlined in previous cancer registration statistics.
- Breast (15.2%), prostate (13.4%), lung (12.7%) and colorectal (11.5%) cancers continue to account for over half of the cancer registrations in England for all ages combined.
The bulletin can be downloaded here
The dataset for 2016 (and previous years) can be found here
Seow, H. and Bainbridge, D. | A Review of the Essential Components of Quality Palliative Care in the Home | Journal of Palliative Medicine. January 2018, 21(S1): S-37-S-44
Objective: The home is an important and often preferable setting of palliative care. While much research has demonstrated the benefits of specialized palliative homecare on patient and system outcomes, there has been little delineation of the underlying components of these efficacious programs. We synthesized the essential elements of palliative homecare from a combined review of successful programs, perspectives of patients and caregivers, and views of healthcare providers in palliative care.
Methods: Five unique palliative homecare studies were included in the rapid review and synthesis—(1) systematic review of the components of efficacious programs; (2) in-depth analysis of 11 effective community-based teams; (3) survey of bereaved caregivers; (4) survey of the general public; and (5) interviews of providers and administrators. A qualitative approach was used to identify transcending themes across the studies.
Results: Six essential elements of quality palliative homecare were common across the studies: (1) Integrated teamwork; (2) Management of pain and physical symptoms; (3) Holistic care; (4) Caring, compassionate, and skilled providers; (5) Timely and responsive care; and (6) Patient and family preparedness.
Conclusions: Our metasynthesis of effective palliative homecare models, as well as, the values of those who use and provide these services, illuminates the underpinning elements of quality home-based care for patients with a life-limiting illness. However, the application of these elements must be relevant to the local community context. To create impactful, sustainable homecare programs, it is critical to capitalize on existing processes, partnerships, and assets.
Full document available here
The Impact of Public Health Awareness Campaigns on the Awareness and Quality of Palliative Care | Journal of Palliative Medicine
Objective: The right to health includes a right of access to good quality palliative care, but inequalities persist. Raising awareness is a key plank of the public health approach to palliative care, but involves consideration of subjects most of us prefer not to address. This review addresses the question: “do public health awareness campaigns effectively improve the awareness and quality of palliative care”?
Background: The evidence shows that public awareness campaigns can improve awareness of palliative care and probably improve quality of care, but there is a lack of evidence about the latter.
Results: A comprehensive public awareness campaign about palliative care (including advance care planning and end-of-life decision making) should be based on clear and shared terminology, use well piloted materials, and the full range of mass media to suit different ages, cultures, and religious/spiritual perspectives. Arts and humanities have a role to play in allowing individuals and communities to express experiences of illness, death, and grief and encourage conversation and thoughtful reflection. There is evidence about key factors for success: targeting, networking, and use of specific, measurable, achievable, realistic time-bound objectives; continuous evaluation; and complementarity to national and international policy.
Discussion: Campaigns should be located within the framework of public health promotion and the synergy between short national mass media campaigns and longer term local community action initiatives carefully considered. National and local projects to raise awareness should identify and address any barriers at the level of individuals, communities, and systems of care, for example, literacy skills and unequal access to resources.
Seymour, J | The Impact of Public Health Awareness Campaigns on the Awareness and Quality of Palliative Care |Journal of Palliative Medicine |January 2018, 21 (S1): S-30-S-36.
NHS Improvement have published information about the End of life care collaborative. They ran a 150-day programme, involving 16 volunteer trusts, to improve end of life care across a number of settings to improve the experience and quality of care received by patients at end of life. They have published the following case studies:
• Chesterfield Royal Hospital NHS FT
• Sheffield Teaching Hospitals NHS FT
• Rotherham NHS FT
• Hillingdon Hospitals NHS FT
• St George’s University NHS Trust
• Cumbria Partnership NHS FT
• Colchester Hospital University NHS FT