NIHR | March 2018 | Why the world needs to get ready for more people dying
“We are living longer and dying slower, but how well prepared are we for the challenges that come with that?”writes Dr Katherine Sleeman on the NIHR’s blog.
A swathe of medical and technological advances during the last century increased life expectancy dramatically by about 30 years rising to 83 for females and 79 for males, the consequence it meant individuals ‘delayed dying’. According to Dr Sleeman we are now at ‘tipping point’ as mortality rates are currently at half a million people a year in England, but this will be raised by about 20% in total over the next 20 years, until an extra 100,000 people are dying each year.
While palliative care is now appreciated as working best when used early and alongside other medical care; it receives, even in countries with high GDP, low levels of research funding. In England this is less than 1 % (0.5%) of the medical research funding allotted to palliative care and end of life research, at a time that Dr Sleeman recognises that demand for end of life care will increase by nearly 40 per cent in the next twenty years. Although advances have ‘changed how we die [they have]not changed the fact that it will happen to all of us.’
The full unedited blog post can be read at NIHR
Schmid, W., Rosland, J. H., von Hofacker, S., Hunskår, I., & Bruvik, F | (2018) |
Patient’s and health care provider’s perspectives on music therapy in palliative care–an integrative review | BMC palliative care | Vol. 17. | 32 | Doi: https://doi.org/10.1186/s12904-018-0286-4
An integrative review analysed the literature on music therapy in English, German or Scandinavian languages published in peer-reviewed journals between November 1978 and December 2016. The criteria for inclusion was music therapy with adults in palliative care conducted by a certified music therapist. This systematic literature review identified 12 papers, three quarters of these had taken a quantitative and the remainder a qualitative approach.
The researchers aimed to identify and discuss the perspectives of both patients and health care providers on music therapy’s (MT) impact in palliative care. They utilised an inductive, qualitative approach to analyse and categorize the data.
Although the majority of the quantitative studies, (7 out of 9) investigated pain as an outcome they also presented the positive effects of MT. The investigators conclude that a major theme in both types of research is a psycho-physiological change through music therapy. The study outcomes of individual MT as having a positive effect on some symptoms, as well as improving quality of life in the setting. While this review adds to existing research, it is an area that requires further research, and would particularly benefit from studies employing a mixed-methods approach.
The full document can be read at BMC Palliative Care
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