Last week the Royal College of Physicians (RCP) released a new report that explores the reasons why doctors and other healthcare professionals find it hard to talk to their patients about dying.
The report called “Talking about dying: How to begin honest conversations about what lies ahead” is downloadable RIGHT HERE
The RCP report is based on conversations with doctors at all levels, patients and carers, and medical organisations and reveals the barriers that stand in the way. It offers some solutions and resources to help, including a ‘mythbusting section’ debunking common but erroneous beliefs that we have about these kinds of conversations
Four English hospitals leading the way in supporting end-of-life care (EOLC) have contributed good practice case studies to the report.
One of the major issues identified within this report and the one that much of the UK media is reporting most frequently is the need for healthcare professionals to begin conversations about planning for end-of-life care nearer the time that patients are given a terminal diagnosis. They point out as would I, that there are multiple opportunities in a patient’s healthcare journey to start honest conversations even earlier than this, when discussing future goals and treatments whether that’s at outpatient appointments, hospital admissions, in social care settings or best of all out in the community.
And why are these conversations so important?
Because the sooner we have these early conversations the sooner we are allowing those we care for opportunities for choice and control over the remainder of their lives. Like many others I would call for anyone with a known life limiting illness to consider creating an Anticipatory Care Plan to manage their health and well-being at the earliest opportunity. Why is explained quite nicely in the video.
Scotland’s Anticipatory Care Planning Toolkit is accessible HERE
For more about this topic its also worth taking a look at the Death Cafe site
Maybe this will inspire you to host your own community Death Cafe!
Providing good end of life care is an NHS priority. Good end of life care tries to ensure that people can die with dignity, with access to appropriate specialist care wherever that person chooses to die. There is no arguement that referrals to hospice-based specialist palliative care would benefit older people most but it appears from a large National Institute of Healthcare Research study that people aged under 50 years were referred to hospice specialist palliative care about a month before people over 75 years.
The majority of people referred for specialist palliative still have cancer which you might expect but specialist palliative care should be available to people with other illnesses that may be equally difficult to manage. However, if you are person with dementia or are in the terminal stages of a stroke were referred about nine days before death compared to much earlier for those with other diseases.
The NIHR study, which you can download here, is the first to provide detailed data on patterns of referrals to UK hospices in England and Wales. I am not sure whether something similar has been done for Scotland or Northern Ireland.
The study clearly highlights variations in referral patterns that depend on your age, disease and where you live. It also highlight a need to better understand the reasons for the delay, which looks suspiciously ageist to me amongst services whose priority you would think would be older people.
Something else new this week. Have you downloaded the FREE Cochrane Library App?
Get the latest evidence when and where you need it. See Available for iPads, iPhones, and Android.
Apologies to my MSc in Gerontology students first; because a number of them have just finished their Frailty in Older People Module. So this is too late to help them with their assignment. However, it’s still useful to know its here.
The journal “Age and Ageing” have released a Virtual Edition called “Frailty” that covers many of the main issues in Frailty, including describing the condition conceptually, reporting its epidemiology, contrasting different options for clinical assessment, detailing the adverse outcomes of frailty in older subjects and some insights into what interventions might improve outcomes for frail older people (and their carers). They have made them available on-line. To have a look at what you can access and to learn a bit more about this important topic CLICK HERE.
Looking forward to next Thursday when Atul Gwande is joining a QI Connect Webinar hosted by Healthcare Improvement Scotland. If you don’t know who Atul Gwande is the I would have a look and listen to these. The Reith Lectures 2014
If you want to join the webinar go to https://www.eventbrite.co.uk/e/qi-connect-atul-gawande-tickets-42419687427
Sorry for failing to post on Friday this week. Went off on Friday night for a week away with the family before the stress that my son sitting his Highers will cause. So what has caught my eye this month? Well, the Royal College of Physicians Commentary Magazine looks at end-of-life care. Palliative consultant Dr Ollie Minton and Prof Albert Weale, chair of the RCP Ethical Issues in Medicine Committee, introduce the features which include amongst other things an honest and emotive account of a death at home, and how more joined-up care could have lessened one family’s distress. Its worth a look just for this contribution but the magazine itself is one of these “gems” that more people should be aware of. You can access this special issue here Thanks to Professor David Clark of the End of Life Study Group at the University of Glasgow for bringing this to my attention. If you are unaware of the work of this group you should visit their webpage at https://www.gla.ac.uk/research/az/endoflifestudies/projects/imminence/ The home page of the “Imminence of Death Study” which might just be the most influential care study carried out in Scotland in recent years.
The second thing I’d like to bring to your attention this week, particularly if you do live in Scotland is the ScottsishGovernemnst current consultation on its plans to develop a first national strategy for tackling social isolation and loneliness. Currently labelled “A Connected Scotland: Tackling social isolation and loneliness and building stronger social connections” If you click on the link the page takes you to where you can download the consultation paper and would encourage to add your views or to try and get your organisation to contribute as effectively reducing social isolation is a public health issue that has a devastating impact on our older population. See https://www.campaigntoendloneliness.org/campaign-end-loneliness-glasgow/
Last month saw the publication of one of those papers that helps confirm something that you always believed you knew. So what did it confirm?
Very old people are more likely to die comfortably if they die in care homes or at home when compared to hospitals. The study carried out by a nursing team at the University of Cambridge found that the oldest old do not always receive effective symptomatic treatment at the end of life. While that is true in most settings up to four times more are likely to die comfortably in a community setting when compared to hospital. So what’s the message? Training for end of life care needs to be improved for all staff, at all levels but perhaps more telling is the need for governments (not just in the UK) to review the funding of long-term care so that more people have the opportunity to die in their home/ care homes than currently so that late admission to hospital is less likely. Not a new message but maybe its time to sit up and take notice. To download the paper go HERE
Sticking with the same topic an End of Life Care resource called “Let’s Talk About Death and Dying” has been produced by Age UK and the Malnutrition Task Force. The materials were produced in a response to a survey showing yet again that conversations about death remain a taboo topic. The new video is below: