Additional comments on this thoughtful conversation.🧵
1. Despatch of a paramedic crew doesn't always come from 999 call. 111 calls can be escalated/trigger an emergency response.
Caller may want clinician advice, fully aware of anticipated dying & DNACPR decision.
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https://twitter.com/MikeStone2_EoL/status/1684849458595381248

2. Calls to DN or GP numbers out of hours may be met with recorded advice to call 111 or 999. Callers seeking advice about EoL care assume this is their next reasonable step, & place their call.
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How can we do better at supporting bereaved friends and colleagues?
Well, here's what bereaved people tell us.

Graphic is by @mlalanda based on 'Listen.' People turn away, cross the road, avoid us in shops or on buses.
We have no energy to reach out, but we really appreciate you making that effort to make contact. We might not reply. But please, stay alongside us.

#EoL care staff need to talk about restlessness prior to death, including it in preparation. Although it's not common, it's highly distressing if companions don't understand it.
Here's an edit of my recent public info post on Facebook, where I don't use medical language.
1/ 'Terminal agitation' isn't a diagnosis, but it describes muddled thinking with unusual behaviours that occasionally happens in a person close to death.

Understanding what might be happening helps us to respond calmly. *

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@DeborahAlsina This is frustrating isn't it? Your mum deserves to have a plan in place for foreseeable events that she's helped to shape & respects her choices.
A few ideas and comments:
1. Advance care planning (#ACP) is the process that considers current & future care needs. Whose job?
1/ @DeborahAlsina #ACP needs teamwork.
*GP is usually the coordinator unless someone else knows a particular person better as their patient.
*Plan belongs to & respects the wishes of the person.
*If the person lacks capacity, a plan using Best Interests decision-making can still be made.
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A seasonal reminder that Christmas isn't always 'merry.'
If this season of jollity and connection jars for you, snags at your raw edges or catches your breath with loss, I'm sorry.
You're not alone. In fact, you're almost certainly near other people pretending to feel jolly.
1/ I'm sorry the winter festivities leave little room for the things that matter most to some of us: memories of happier times, companionship that doesn't insist on good cheer, space for the names of the people or relationships we are yearning for.
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@SachaLG @kesleeman Palliative care is about managing symptoms of an illness so that the person can live 'well enough.'
Obviously, curing their illness is the surest route to wellness, so more often than not 'palliation' happens because cure can't.
But not always.
For example:
1/ @SachaLG @kesleeman Specialists in palliative care who work in cancer centres regularly advise about minimising side effects of cancer treatment, including for patients who are likely to be cured by their treatment.
Palliation of symptoms reduces the chances they'll miss treatments.
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What can we learn from the death of the #Queen?

The world has watched her live through the process of #OrdinaryDying, and yet dying went unspoken, un-named.

Let's notice what nobody mentioned: we all saw the Queen going through the stages of ordinary dying.

A 🧵...

1/ As her body wearied, she needed to ration her energy, reduce her public engagements, delegate some tasks.

Energy runs out faster as the process progresses.

But her mind remained crystal-clear, her famous sense of humour was undimmed.

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This is the entrance to @rcpsglasgow.
I was last here in 1986 to sit my Membership exam. I was terrified. I had struggled to pass the Part 1 exam, and I felt adrift in my career plans, left behind by my peers, humiliated and lost.
A 🧵...
#MedTwitter some of you may relate. Yet the Part 2 exam felt different. Instead of a multiple choice quiz, this was an exam about the work I loved. It was about patients, about physical signs & difficult symptoms, about how people live despite long-term health challenges.

That gave me courage.
Plus...
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With thanks to @richardodurrant for permission to share our DMs.
Worries about lack of nutrition at the end of life are very common, & should always be taken seriously.
I'm talking here about dying from an illness, & how dying impacts appetite & gut function.
cc @APMPostTweets
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https://twitter.com/richardodurrant/status/1491209858896777216

Hello Richard
I'm sorry you are in such a sad situation right now. I hope your Mum is peaceful and comfortable.

The process of dying can take a variable amount of time. The early stages are all about loss of energy, increasing need for rest and escalating drowsiness.
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Timely CPR saved Chris Eriksen's life.
The match footage shows
-how immediate collapse is after #CardiacArrest
-how quickly we need to respond
In Cardiac Arrest the heart stops while other organs are healthy: rapid CPR response saves lives.
Learn CPR: see @ResusCouncilUK
1/ There has been criticism of TV companies broadcasting footage of Eriksen's on-pitch collapse. I wonder what he will say when he is ready to comment.
I hope the footage drives better public understanding of CPR & a wider uptake of CPR training.
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#MedicalTwitter, this is not OK.
Please look at this story, & the responses, to see the uphill struggle we have to talk with compassion about CPR to people who are sick, frightened & not accompanied by their loved ones during this time of covid.
Some comments:
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https://twitter.com/AndyWoodturner/status/1401208658764120070

Firstly, I have been the doctor whose words were relayed by a v sick patient to a relative, & what the relative heard was not what I said. But it WAS what the patient/family understood from what I said, so I was responsible for that miscommunication.
Communication matters.
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How should we help teenagers to understand and accompany a dying relative?
Here are some ideas and suggestions: I know the experts on Twitter will come in to support @healinghappily in her quest to be as ready as she can be.

A thread.

https://twitter.com/healinghappily/status/1385154019312734214

First: there's no 'right answer.' Your teens are individuals, and what suits one may not sit well for another.
Good support is a mixture of access to good information, lots of listening, & giving them choices.

Deathbeds. Some thoughts. A thread.

Most of us haven't seen somebody die in real life. We get our inner pictures from TV dramas, cinema screens, media stories. We've had more of those media stories than usual during Covid19. But we haven't been there for real.

1/n Worse: for some of us, our beloved person died and we weren't allowed to be there. We have pictures in our minds of how it might have been, but no way of knowing for sure.

2/

Thread:
Looking at the future, as you grow older or your health deteriorates:
🌈 What's your best hope?
😱 What's your worst dread?
👣 What steps can you take now that will help to ensure the future is closer to 🌈 than to 😱?
1/ Who will you need to talk to as you think about what steps to take? e.g.
Family &friends: people who have your wellbeing in mind.
Medical advisers: people you trust to give you truthful information.
Rights advisers: people to ensure your concerns receive a fair consideration.
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Before #COVID19 I tended to think bereavement support was not integral to palliative care, fearing we might 'medicalise' grief.
During a period when family life is disrupted & beloveds are separated at death, prioritising bereavement care is essential - it starts before death.
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https://twitter.com/Lucy_Selman/status/1259046725836255233

Making sense of a death in our bereavement requires us to be able to understand the story of the dying.
This is why people bereaved by disasters need enquiries & information. They need to construct the narrative of their dying loved one's final days, hours, minutes.
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This is the time to have those tender conversations.
Not out of panic.
Out of love.
If you want to understand each other's wishes, here are a few questions to ponder together.
There are no right answers.
The only wrong answer is silence. Here's @doctor_oxford's calming but important discussion of why we need to talk about dying:
theguardian.com/world/2020/mar…

What do we need to know now, to protect the wishes of our loved ones at the end of their lives?
Great question @tdeweymarn @DrMariMcV
I feel a thread coming on...

https://twitter.com/tdeweymarn/status/1232433899839442947

Before you start, remember this conversation is theirs as much as yours:
- invite, don't compel.
- give them options about when to have this conversation, where to have it, how long to give it
-have a plan for after the chat: cuppa, favourite TV show, walk, hobby etc

Here's a cry from the heart. #eol Twitter, this is so real: @chippety knows this is the dying time & can't deal with books, articles, long diatribes. This is about getting to the heart of supporting our loved ones at the end of life.

https://twitter.com/chippety/status/1224068156379082755

Practical things:
Where will he be cared for? How can companions ensure he has company when he wishes, time to rest, help to move around? Support for his dearest people? Help with laundry, shopping, meals?
Make a list of jobs.
Write rotas.
People want to help but don't know how.

@thetestlabsio I tried to respond to your question with a thread of 10 tweets, but somehow they seems to have become jumbled. I'm re-posting below: slightly generic answers, because so many people ask exactly what you are wondering, and I hope it might help them, too.
Thread ⬇️ I wish someone could have explained her dying to you as it was happening. This might help:
1. Most people move into deeper unconsciousness as the process of dying proceeds.
2. To begin with, they are simply tired & need more sleep, dozing between short periods of being awake.
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#TipsForNewDocs
Some patients are sick enough to die. They may pull through. They might not.
Say 'sick enough to die' to pt & family. Not 'serious.' Not 'critical.' Not 'unstable.' Name death as a possibility, & plan good #eol care in parallel with current treatment plan.
1/ If your patient is sick enough to die, get support from your seniors &/or pall care team.
Patients who see the pall care team are not obliged to die.
Pall care can help you with parallel planning, support pt/family/staff (you!), in ER, wards or ICU.
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