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By Eggy Miracles, I mean: Keep on living! Scroll down for more on this.
Here’s my top three things for individuals and families to consider doing when someone is near the end of life.
- Keep on living. If you don’t like Eggy Miracles, this can mean whatever else you do like doing!
- Get the super-important-practical things done in plenty of time
- Talk, talk, talk
SPICT TM (Supportive & Palliative Care Indicators Tool) can help doctors identify people with life-limiting illnesses and/or deteriorating health. This is a suggestion for GPs who want to ensure their practice palliative care register is as comprehensive as possible.
A GP with 2000 patients should expect, each year, 7-8 deaths from dementia/frailty, 6 from organ failure (eg COPD, heart failure) and 5 from cancer. Does the practice palliative care register reflect this?
If a practice doesn’t already have 1% of its practice list on the palliative care register and/or are trying to identify people at risk of acute deteriorations and hospital admission, SPICT TM can help.
I was really excited when I read about Canadian ideas about the PATH style of decision making. Palliative And Therapeutic Harmonisation looks at older people with multiple conditions in a totally different way than the current ‘cult of cure’ approach. It’s less about keeping on ‘battling’, and more about quality of life and care at home.
Then I found four videos which go through the whole PATH to better decision making. In case you don’t have time to watch them all (and do please try to make time!), then here’s my summary.
There’s lot of talk about the demographic timebomb — with increases in life expectancy, and the trend (in the West) for smaller family sizes.
Globally the percentage of the population that is 65 or older will double from 10% to 20% by 2050. In the UK, forecasts suggest there will be only 3.3 working age adults earning money to support the pensions and care of each elderly person.
This is better than in Japan, where there are only 2.1, but much less secure than the 11.3 in Bangladesh.
This demographic timebomb is not only an economic problem. Where are all the carers going to come from as these older people get sicker and frailer, and need support?
When I spoke at St Josephs hospice on home deaths, the lovely audience wanted specific links to what I think are the best videos on palliative care. Here they are below.
Before that though, I wanted to share some more local data. I spoke about the shocking effects on deprivation in Scotland, and said it would be similar elsewhere. I’m not happy to be proved right.
This week’s BMA News Review says that, in Tower Hamlets, “adults can expect to have the disease profile of a 75 year old at the age of just 55”.
So, it’s even more important to look at Martin Wilson on ‘realistic palliative care for an ageing population’. This includes shocking data, and shocking conclusions, on how living and dying if you’re in a deprived area is like being on another planet. As well as how death is a feminist issue:
Then, here’s Kieran Sweeney talking about how, amongst other things “… clinicians inadvertently heap small humiliations on patients”. This is, sadly, true. Please talk a moment to think if you have ever done this. Not on purpose, of course! And how you might never do it again.
What a great Compassionate Neighbours makeover! The St Josephs hospice initiative is now offering “friendship and a listening ear” to anyone who asks for this — rather than focusing only on people at the end of life. This will surely increase the referrals.
It may even mean that people who doctors might label as at the ‘end of life’ get help earlier.
Those who contact the new improved Compassionate Neighbours will be given information about a wide range of local services. Anyone who is nearing the end of life can be offered the ongoing excellent Compassionate Neighbours end-of-life service.
I already commented on the first ever randomised trial of effectiveness of volunteers at the end of life. This had problems getting enough referrals. I think the Compassionate Neighbours makeover will help with this sort of problem.
Individuals and families — especially people with long term conditions — don’t like being told they are close to, or at, the ‘end of life’.
They are, after all, spending more time time living than dying.
Maybe other end-of-life services need to learn from the Compassionate Neighbours makeover?
This first ever randomised trial of effectiveness has shown that volunteers may help at the end of life. But its methodological problems may say even more about the challenges facing volunteer services.
The results showed a trend in favour of the intervention and it was concluded that:
“Doctors and other clinicians can confidently refer people in their last year of life to volunteer services for support. They can expect that these services may slow a person’s decline in quality of life.
It was also recommended that Policymakers should continue to promote the involvement of volunteers in end-of-life care.
The study limitations were said to include “study power, blinding, missing data, attrition and intervention fidelity”.
But I think the limitations of the study actually give important clues about volunteer support services for people nearing the end of life.
Bystanders in Victoria, Australia are twice as likely to do CPR if they see an out of hospital cardiac arrest than they were 10 years ago. This means that local people are increasingly likely to survive cardiac arrest, maintain their independence and have a good quality of life.
- More than half (61%) of people who were witnessed to collapse by bystanders in Victoria received CPR, compared to 36% 10 years ago.
- Patients who received CPR from bystanders in Victoria were approximately 11 times more likely to be found in a shockable rhythm, the cardiac rhythm most favourable to survival.
- More patients first shocked by bystanders in Victoria were discharged alive from hospital (55%) than those who had to wait for first shock by ambulance paramedics (28%).
- Patients who received CPR from bystanders in Victoria were twice as likely to be discharged alive from hospital as those who did not receive bystander CPR (12% vs 6%).
Professor Karen Smith has described how quick intervention is the key to survival.
Bystanders in Victoria take a number of steps to improve survival:
“The first step is bystanders being able to recognise that someone is in a cardiac arrest and calling [their equivalent of 999] to ask for help from the emergency medical services. Secondly, a bystander can initiate resuscitation, by performing CPR or, if available, using a public automated external defibrillator to shock (defibrillate) the patient so as to return them to a normal heart rhythm.”
Ambulance Victoria does well when compared to other international agencies.
More than one-third (35%) of Victorian patients who were seen to collapse, who had a shockable heart rhythm on arrival of help, and subsequently received resuscitation by emergency medical services survived. This increases to 38% for patients in metropolitan Melbourne.
Most Victorian survivors were discharged home (83%). Of patients with a cardiac arrest in 2014-2015, who were followed up for 12 months, 74 per cent of those working prior to their arrest had returned to work 12 months after their arrest.
This still means 26% of people previously working have not returned to work. And, unfortunately, substantial numbers of people die or do not return home after their cardiac arrest.
But, if you’re going to have an out-of-hospital cardiac arrest, Victoria in Australia is a better place to do this than the UK! Bystanders in Victoria are much more likely to help you.
Surely, this is a challenge we Londoners need to rise to!?
Read more at:
If bystanders do CPR after a cardiac arrest, they can save lives.
If you’re a bystander, and you do CPR, you can double or even treble survival rates.
In the UK, there are more than 30,000 out of hospital cardiac arrests (OOHCAs) every year. But only 7-9% of people survive. In other countries, survival after an OOHCA is much higher : it’s 21% in North Holland, 20% in Seattle and 25% in Norway.
The low survival rates in England are partly because less than half of bystanders here perform life saving CPR. This compares with almost three quarters of Norwegians intervening. Survival rates there are up to three times higher.
Every minute without CPR or defibrillation can reduce the chances of survival by around ten per cent. After ten minutes with no CPR or defibrillation, only two out of 100 victims (or less) have a chance of surviving.