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A funeral using a funeral director costs on average £4,078. In London, the cost is almost double this.
‘Funeral plans’ are on the TV at the moment – suggesting that these are ‘the thing to do’ for caring mums and dads / grans and grandads. BUT .. are they just a con?
Do funeral plans actually provide economical funerals at all?
It’s not only me thinks you have to be careful: look at this from the Daily Mail. That’s not a publication I frequently recommend, but they have summed up the recent Fairer Finance report well. The actual report they are referring to is here https://www.fairerfinance.com/campaigns/funeral-plans.
SO please don’t just agree to the first funeral / funeral plan you think of / see!
Family members who have witnessed or taken part in unsuccessful CPR when their relatives are at the end of life are almost never heard from. But I think we all can learn from Debbies story: she’s a first aider whose frail mother collapsed at home, and who asked for her mum not to have CPR.
Debbies story: I’m a trained first aider. My Mum had lived alone since Dad died. She had always been independent, but she had four chest infections in a row last winter so I was staying with her. The problems with her chest were getting her down. She told me she was fed up with life, so I asked for a nurse to come round to assess her. Anyway, she went to the toilet, and I felt she was gone too long. When I went to check, I found her collapsed.
Faced with that situation, instinct and training kicked in. I got her onto the floor, rang for an ambulance and started CPR.
I know I broke her ribs — I felt a horrible, sickening crunching as they snapped under my hands. It was nothing like the dummy we’d practised on.
The doctors in A&E told me it was common in elderly people, but they never teach you that on first aid courses. And it was all so undignified, squashed in her hallway, and me knowing all the time that if I revived her she would probably never forgive me.
I don’t know how long the ambulance took to arrive, but it felt like forever. I was glad to hand Mum over to the professionals and did my best to pull her pants back up and try to restore at least a little dignity to her. They applied the paddles, and got her heart beating. But I couldn’t tell the ambulance service that I wanted to let her go. That I knew my Mum. That I knew there was no way she would want to live the remainder of her life no longer capable of being independent.
She was unconscious but they got her stable enough to transport her to hospital. I left in my car at the same time but arrived at the hospital before them. When they rushed her into A&E, the ambulance-men told me that I’d given her the best possible chance of survival, but her heart had stopped again on the journey and they’d had to resuscitate her again.
The A&E staff were brilliant. But on the way there I’d had time to think. Mum had managed to plan her funeral — she’d even written down what she wanted to wear, what to place in her coffin and the exact service she wanted because she’d been so impressed with Dad’s funeral.
But we hadn’t thought about the actual dying. And nobody teaches you the words to say when you want the doctors to let somebody go. Not to resuscitate them if their heart stops again.
It was not an easy decision but I knew it was right. Your head is saying “let her go” but your gut is churning and you desperately don’t want her to die. You also do worry about what the doctors will think of you — will they think you don’t care? Will they try to persuade you to change your mind when it’s already the most difficult decision you’ve ever had to make?
I could bear that the professionals might think badly of me. But I couldn’t bear that my Mum would hate me for keeping her alive without being fully restored to health and fitness and I just knew no doctor could do that. They agreed to make her comfortable, not to try resuscitating her again, and see how she fared through the night.
I was called back to the hospital at 4.30 the next morning as they thought the end was near. The doctors told me her body was shutting down. The decision to turn off the life support machines was easy, as was the decision to donate her corneas. If something good was going to come out of tragedy, that was a comfort. I held her hand as she passed away. But by the time I said the words I’d always wanted to say, my Mum was unconscious. I’ve been told that hearing is the last sense to go so I like to think she did hear.
No one wants their Mum to die. But who wants their Mum to suffer? I loved my Mum enough to try to save her. But I also loved her enough to let her go.
‘Debbie’ is not this person’s real name. But this is a real story, and these are ‘Debbie’s’ real words.
Debbies story is clear about howDebbie truly did put her Mum front and centre — despite her worry that the doctors might think she didn’t care. I admire Debbie’s bravery both in trying to save her mum and — even more difficult — in letting her mum go.
I wrote back to Debbie about how sorry I was, not only about what happened to her Mum, but also that she had to do all this by herself. Writing to me was the first time Debbie had shared her story and, although I reassured her, she was still — 2 years later — worrying that the ribs she had broken had contributed to her Mum’s death (they hadnt).
Maybe the biggest lesson, though, is that talking about all of this earlier could have helped. It may not have prevented the collapse, but it could have prevented the CPR, and all the medical interventions that happened.
Even more importantly, it might have given Debbie time to say “the words I’d always wanted to say”.
The big practical distinction to make is between cardiac arrests when the heart stops first, and natural dying. These are quite different things. Dr Dan Beckett has explained how cardiac arrests may (may!) have a reversible cause, while natural dying doesn’t.
In a cardiac arrest, the heart stops first. Quite often this follows a heart attack and problems with electricity in the heart. Defibrillation may sometimes be able to restart the heart.
In a natural death, the heart tends to stop last, as part of the natural process of dying. CPR is likely to be futile because the body is dying. It may even be harmful since it leads to an undignified death, and may prolong the dying process.
Debbies story remembers Debbie’s Mum. And it’s in honour of Debbie, who has told me: “If anyone else can benefit or learn from my story, at least something positive will come out of it”.
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”.