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I’m going to present four linked multimedia pieces at my show on Ultimate Living at Wandsworth Arts Fringe (more details below). Together, they tell the story of how my intimate knowledge of my dad’s love of skiing meant that I could help him die well.
Helping my dad die was probably the most important thing I have ever done.
Helping him also helped with my own bereavement.
I want to share my own approach to try to help other families, and other patients. Especially since there is going to be a tidal-wave of death, as the demographic bulge of baby-boomers start to die.
I’m not suggesting that family collaboration can replace specialist staff.
Even though I do think it’s important to recognise that the specialist staff do have some limitations. The Royal College of Physicians has identified that “the timely, honest conversations about their future that patients want are not happening.” This is the case even though proactive discussions are “fundamental to effective clinical management plans.”
There is already work going on to help junior medical staff with this in the Second Conversations project.
But maybe there is an even more fundamental problem than learning some ‘transactional’ communication skills. It’s shown in the shock many doctors feel when they go over ‘to the other side’, and become a patient.
This is well exemplified in Keiran Sweeney talking about the poor relational competency of staff after his own terminal diagnosis. Sweeney clearly said that it’s “not good enough” and that the doctors were “not brave enough” in talking to him.
When and where is this sort of thing discussed?
Recent Compassion in Dying research challenges the idea that death is a taboo – that it’s too awkward or difficult to talk about, or that people simply don’t want to. Compassion in Dying “have found the opposite – people with terminal or life-changing conditions, and those around them, want and need to talk about death and dying.”
BMA qualitative research in 2014 showed that the impacts on families and loved ones of end-of-life care and after a death were a major concern for the majority of the public. Doctors were less likely to mention families as important.
So how, practically, to move this forward?
Sweeney talks about “rediscovering the humanity in a patient” and how this can be “infinitely rewarding” for healthcare professionals. Manek found that the best thing she could do for one patient was to bring buckets of KFC.
Manek has written that good end of life conversations are “more about life than any other conversations I had ever had with my patients”.
She is concerned that doctors are “failing to hear what really matters to [patients and families] at a time when their choices should be most respected”.
This is where my WAF work comes in.
Not everyone is as keen on skiing as my dad was – but that’s the point.
Individual families are experts on themselves.
Let’s allow, support, facilitate this!
ULTIMATE LIVING WITH WAF
- Black Run: I knew my dad wasn’t interested in anything which wasn’t fun – so I had to make dying fun for him. I asked about his last ‘Black Run’: as something difficult, that you do by yourself, and fun. He told me about how he hit Black Ice – and then you cant stop or turn. We agreed it was a great analogy to help him.
- After he’d stopped talking, my dad somehow got out of bed to stand and ski: Deathbed Skiing
- I witnessed a heart-stops-last cardiac arrest when my dad took his last breath. To show this, there are lights activated by the sound of clapping; plus, projected behind me. an acorn germinating (fueled by my tears) to show that there truly is a Cycle of Life.
- After he died, I washed my dad’s body. The warm water means that the small tree which grew from the acorn, grows into a large fruiting forest. Very definitely, Ultimate Living!
I’m going to describe two natural deaths here.
First the peaceful death of Patrick, my father. You can see him up above, trying out ballooning in the months before his natural death,
Then the death of Edith. Of course, Edith is not this lady’s real name. I’ve made some small changes to her story to ensure patient confidentiality is maintained.
The reason I’m sharing these stories now is that the New York Times just published something titled When the Hospice Care System Fails. As many of the comments make clear, it’s less a criticism of hospice and more of an inditement of a medical system which doesn’t discuss dying with patients until there is little time left for any benefit. In the example described, the father/husband died less than a day after home hospice staff first visited. And he died in a way he and his family did not want – in a hospital rather than at home, after distressing CPR and intubation.
But I was almost more concerned when the doctor wrote:
“I simply have no idea what it must feel like to be at home watching a person you love take his last breaths. Sometimes that reality is untenable. I’m not sure it’s even possible to fully ready yourself for this. Of course people get scared and plans fail.”
It’s admirable that this doctor is not claiming to know about something he has no personal experience of.
But it’s very deeply worrying that this doctor has “simply no idea” about home / natural deaths.
I think if doctors like him – in the UK as well as the USA – were more, knowledgeable about these, they would feel happier to talk earlier with patients and families. And we could all work together to ensure that home hospice services were even better than they can already be
So first, my dad, Patrick.
In essence, he died in a hospice because my mum didn’t want her husband of 50 years to die in a bed she would have to sleep in again,
In the hospice there was no medical care beyond medication that could have easily been given at home. I did a very large part of my dad’s personal care.
And it was just him and me when he took his last breath, when he had a peaceful natural death.
If you want to read more about this, see: http://www.carolinemawer.com/heartbeat-word
Next, Edith. With no family, she had been living in a care home for some years. The hospice staff who had visited her were effectively offering ‘hospice at home’. I was asked to go and see her one weekend when I was working as an out-of-hours doctor.
I knock and go into Edith’s room(1). There’s a haze of talc and an overpowering fragrance of lavender and Edith herself is just a wisp of white hair beneath a mound of bedding. When I dig her out, it’s obvious that she’s always been small. Now though, she looks like a skinny kid drowning in her mum’s nightie.
She’s not talking, and I’m not sure if she can hear or understand me, but I ask her if its OK for me to listen to her chest. I can see from her skin that she’s not dehydrated. Her bottom and heels — the places bed sores start — are fine, which shows the high quality of the nursing care. Her lips are dry and I tell the care assistant how this might be improved. As I do up the teeny buttons on her nightdress, I notice there’s not even a single photo beside Edith’s bed.
The care assistant and I go out into the corridor and I ask: “What about her family?” I’m told that Edith has never married. She’s the age, now I come to think of it, for having had a fiancée who died in the War. Apparently, her neighbour was in yesterday to see her. He knows that she is terminally ill and will be back again to see her tomorrow.
A woman strides up to me and insists on a full update from me about Edith. I’ve still got a list of other visits to other sick people. And the phone queues are backing up at the out-of-hours centre. But the lady grabs my arm and immediately rings to get the necessary permission from Edith’s next of kin. Edith’s neighbour has had to take on that role too.
From what I can hear, she doesn’t seem to know the neighbour well, if at all. I wonder how much she already knows about Edith’s current situation, and how much it’s really appropriate to tell her?
If I talk about ‘Dying’, I’m going to be asked ‘How long has she got, doc?’ When I never know the exact answer to this question.
There’s lots of evidence that doctors are not good at judging when, or even if, someone is dying. It’s not just me. ‘Dying’ is — technically as well as emotionally — a difficult diagnosis to make. I met Edith maybe 20 minutes ago, and she hasn’t been able to speak even a single word to me. I’m definitely not going to bring up the topic now, I decide.
I say: “Let’s go in and look at this lady together.”
And when we all troop in, I’m grateful that I always talk to family and friends in front of the patient. Because Edith is herself very definitely bringing up the topic of dying.
She has just started Cheyne-Stoking. This irregular breathing happens towards the very end of life. It’s confusing and can be distressing to watch as dying people repeatedly seem to stop breathing. Is she dead? Or isn’t she? She is … No, she isn’t ……… Yes? …………………… No! ……….Yes …………………………. No! ….. and so on and so on, sometimes even for several days.
The visitor does a little gasp and the care assistant starts prodding Edith’s chest to try to get her to breathe better. Cheyne-Stokes breathing is never improved by poking the patient, and I move in to stop this. Without saying anything of course, since the visitor doesn’t need to know that the care assistant doesn’t seem to understand what is going on.
I sit down on the edge of Edith’s bed. The infection control regulations say I’m not supposed to do this, but down here, I can physically block the care assistant. I look up at the visitor and ask her with my eyes if she wants to sit where I am. She shakes her head, but doesn’t move away, so I concentrate back on Edith. I stroke and then gently hold her hand. I smooth out her tufts of silver-white hair. I’m beside her, simply sitting with her.
Really quite quickly, Edith stops breathing. Though, of course, I wait a little while because those Cheyne-Stokes are often deceptive.
When Edith really has taken her last breath, I stand up and ask the visitor if she is OK. I don’t even know this lady’s name, but she’s just become my almost-patient and I need to look after her.
“I’m alright”, she says slowly, “I’m alright”.
“Did you know how unwell she was?” I ask, cautiously.
She tells me that she hasn’t seen her friend for many years, since before the dementia and all the strokes took hold. “We used to be really close”, she tells me.
I say: “Many people might not have managed as well as you, with what just happened”.
She looks straight back at me: “You were calm, so I was calm”.
As she says this, I know that we are sharing human kindness. She is giving me a gift, just like she’d seen me giving her friend a gift. This was one of those important times that come in everyone’s life. Gifts make them easier. Easier for everyone.
“I’m going to let her neighbour know she had someone with her right at the end”, she tells me.
I’m privileged and proud to have been that someone.
Doctors don’t often witness a natural death. We’re there for many more of the ugly drawn-out ones. For the futile resuscitations. But not so many of the peaceful natural deaths — partly because no-one needs a doctor for a peaceful death. It’s a time for families. And I just got to be a part of Edith’s family.
Edith’s friend smiles at me. “Everything was done”, she says. “Everything she needed was done”.
She hugs me. And I smile back at her.
(1): Edith is not this patients real name. I have removed the most undignified parts of her story, and made some small changes so that she and her friend cannot be identified.
Sight loss is a major global health problem. Many eye diseases can be treated effectively if they detected early, But the current imaging system needs highly trained experts. DeepMind, working with Moorfields Eye Hospital has developed a system using Artificial Intelligence to ‘read’ and interpret the results of optical coherence tomography (OCT) scans.
OCT produces a detailed map of the back of the eye, in 3D images. There’s some info about OCT here and a normal OCT image below
Healthcare professionals at Moorfields have to go through over 1000 OCT scans a day at Moorfields. Which obviously takes lots of skilled time! The inevitable delays can cause sight loss.
This week, an Artificial Intelligence / OCT system was reported to be as good as, or even slightly better than, the best experts. There’s a less technical write-up of the study here.The application of Artificial Intelligence to Optical Coherence Tomography is surely very welcome if it can prioritise those who need specialist clinical input – and so speed up vision-saving interventions. Happily, the initial results suggest this is the case.
Deep Mind are keen to sort out the ‘black box’ problem for clinicians understanding a new technology. What about the patients?
Can they be as exciting in their patient / community involvement?
We could – and surely should – improve the UK situation!
If bystanders – ordinary people like you and me – get on and do CPR they can DOUBLE the chances of survival.
Then, try Lifesaver. This is a live-action movie that you play like a game. It shows you how to save someone’s life in four action-packed scenarios – including a brand new teen-focused scenario. It throws you into the heart of the action as you make crucial decisions and learn essential life-saving skills.
In really short summary, CPR is about Call Push Rescue.
Most defibrillators ‘talk’ to you to tell you what to do when you open them up. If your one doesnt ‘talk’, there will always be easy instructions inside ALL defibrillator boxes.
After CALL, its PUSH and RESCUE.
Even if you’ve not been to a formal training session, you can learn how to PUSH from YouTube. Vinnie Jones has made a video with a ‘CPR lesson you’ll never forget’.
But the CPR on the video below is even better. Mini Vinnie demonstrates that hands-only CPR is – literally – childsplay:
To remind you exactly what to do for hands-only CPR, and to check that you are pushing hard enough and fast enough, you can get the free British Heart Foundation Pocket CPR app here.
But if you really want to try doing CPR, the nearest you’re going to get to real life without it actually happening is the crisis simulator live action movie game Life-saver.
Practicing what to do in this live action movie game means you’ll be much better able to help if you ever witness a cardiac arrest in real life.
Try it out here (you’ll need to have Flashplayer). It takes a few moments for the game to load up: please wait while the circle whizzes round to reach 100. Then you have to Click that you have read and accepted the terms of the Lifesaver website. You don’t have to put your details in unless you want to (you can get a certificate!). But you must press ‘Enter’. Look down to click on ‘Menu’. Choose a name and press Start Now.
This simulator is very like real life. Pay attention! You’re about to try to restart a heart! Although this video game is very realistic then, unlike in real life, you can always try again. Especially if you’re as old as me and don’t immediately understand all the fine details of video gaming!
Please let me know how it went! I’m at email@example.com
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.