With great thanks to Lisa Keillor
Working in the ED probably exposes us to a considerable amount of death and dying. From the unexpected cardiac arrest or trauma patient, through to the expected death of a patient with a terminal prognosis. Therefore, I think as emergency medicine health care professionals we are not only experts in resuscitation, but we are experts in managing the death in the acute setting.
A case to get us started
It’s a typical 1am night shift, there are 10 ambulances outside, and it’s busy. Another pre-alert comes through:
Hoisted, bed bound in a nursing home.
Multiple co morbidities including advanced dementia with multiple episodes of aspiration pneumonia.
Brought short of breath – with a priority call to Resus
Observations are: Blood pressure of 103/67,
oxygen saturations of 92% on air,
Temperature of 38.3 GCS 14/15.
Doris arrives, and you take a full history and examine her. The most likely diagnosis you think after examining the patient is pneumonia (Editor: maybe covid, maybe not, it doesn’t matter at this point).
This lady is frail, with a clinical frailty score on the Rockwood Classification of 8 and with multiple comorbidities. Given this, she has a high probability of dying. After starting treatment for this lady, what are your considerations?
Dying comes in 3’s
When thinking about patients who might die, bear the following things in mind.
1. There are 3 “types” of dying:
Uncertain recovery/gradual decline.
Image from Illness trajectories and palliative care
With these 3 types of dying, you therefore need 3 types of dying conversations:
Dying imminently – Need to gain rapid rapport then tell them/important people that they are dying (use a D word (death, dying, dead) to avoid any confusion. This is happening now! It’s like thrombolysis or starting CPR/PPCI – every second you lose is precious time that you are taking away from them and their families.
Dying soon – Next few days/weeks. Need to be honest. Often will be plagued by uncertainty. You don’t know when, but this may be the first time that someone has experienced death. Lead them through it as you are the person more experienced.
Uncertain Recovery – We don’t know, but they are likely in their last chapter. Do they know? How do they think things are going? Signpost – this person is unwell enough to die. Have they made plans for this? What’s the most important thing to them? This conversation will shape future encounters – if you do it well then, they will be expecting future conversations. If we don’t start it, we make it more difficult for our colleagues or worse they will die without ever knowing it was likely.
2. Questions you are likely asking your self
Often, I find that I’m thinking with patients when they present unwell:
Does this person have a DNACPR?
- This is shorthand for – I’m worried that this person might deteriorate, and we need a plan for that. Start the conversation.
“Why isn’t there an Advance Care Plan?”
- This is shorthand for – is being in ED the best place for this person? It’s probably an indicator of frailty or palliative disease. We complain bitterly about our colleagues not making escalation plans, then often if the patient isn’t imminently dying, we duck out of it. And don’t tell anyone. In Leicester where I work about 20% of our Clinical Frailty Score 7-9 patients who died within 30 days of attending ED didn’t have something written to their GP suggesting advance care planning. That included a good number of people who were discharged. Some people may be in and out so much that they haven’t had a chance to see their GP. GPs are not mind readers! If you’ve completed a DNACPR or had a discussion – make sure that’s documented and the right people know. Don’t rely on the admission team to write that the person has a new DNACPR decision – RCEM says that if you did it, you should communicate it!
“Why is she here?” – surely this was planned and inevitable–> why has someone not thought of this before? Wasn’t there some opportunity to work out the risks vs benefits of coming into hospital?
3. Helpful Phrases
Having honest conversations with patients and their families can be challenging.
I think you are sick enough to die…
Try and make sure this is done in a quiet place, with minimal distractions.
Don’t be afraid to use the D word – death, dying, dead.
It’s ok to be honest with the uncertainty, you may not know they are going to die. You don’t always have to have the whole conversation. It leaves the ball rolling, and gets them thinking about it, without it being a shock.
What do you know about dying?
Death is a familiar concept to us. People often have little or no experience of death, other than what is on TV. And we know how accurate that is!
It’s important that we give the tools to help people narrate what this experience is. Give them some tools and expectations going forward. Through what is going to be their worse day!
If things get worse, what might we wish we’d done?
This is the person’s only death. It has potential for long term consequences on their loved ones. Doing the right thing sometimes takes longer than doing the easy thing. But if you’re prepared to spend hours continuing CPR after you’ve thrombolysed a PE in cardiac arrest, then why not spend time ensuring that you, the last doctor that might care for this person, gives them the death that they want. If people have an uncertain future and definitely if they are dying – TELL them! They deserve the opportunity to plan and prepare. Even if the only thing you do is to tell them that they’re sick enough to die, then that at least signposts towards the conversations to come. Kathryn Mannix describes “narrating the deathbed” as a midwife would describe normal delivery. Dying is a normal process that many people are unfamiliar with. Explaining what is to come and how it might happen will prepare them.
4. 3 things to remember
Pass the baton
Palliative and active management are NOT mutually exclusive
And making a good escalation plan will also help that F1 on the ward at 3am to avoid doing inappropriate things that the patient didn’t want. Remember those times when you saw a patient who in retrospect was clearly dying. Help out your F1 and make a plan if the patient is likely to deteriorate. And if they’re not likely to deteriorate imminently then at least start by communicating the uncertainty and make it easier for the next person that sees the patient.
Palliative and active management are not the same
Sometimes, we might start treatment for infection expecting that the person might still deteriorate. Sometimes a septic person may FEEL better symptomatically if we give them antibiotics and fluids. We might stop regular medications, but an insulin infusion may be a good option to prevent a Type 1 diabetic going into DKA and feeling unwell with it. Sometimes a person with palliative cancer may benefit from a defunctioning ileostomy to relieve their symptoms of obstruction. And a frail older person may benefit from operative intervention for a hip fracture to relieve pain and potentially restore function. Just because someone is “palliative”, it doesn’t preclude some options of “active” treatment. It’s not being on the fence; it’s making an individual decision based on the patient in front of you. Remember those times that you wanted less protocol driven medicine, less targets and more individualised care? Well here’s your chance! An opportunity to manage a patient in which your sole purpose is to make them FEEL BETTER! No targets, guidance but no protocols and the opportunity to feel like an amazing doctor in an ocean of difficult.
Look after yourself and others
Care for yourself and others. A pre-hospital team and a family may have spent time trying to save this person who you can immediately see is dying. Take time to debrief, thank them for their time and their hard work and offer them the opportunity to talk through the incident. Even if this is someone who you feel should never have had CPR in the first place. They might think that too, but they’ve had to do it – it’s their job. And finally, take a minute to respectfully do nothing but remember that the person we’ve just spent time doing stuff to is actually a person. We’ve found that staff really value this. Try it, see what you think!
It’s easy to start antibiotics, fluids and send Doris (our patient) to the medical ward.
It isn’t much more difficulty to start having the conversation and planning for next time. Ideally if we could do the whole thing. But realistically, if the only thing we can do is say there’s uncertainty there, and that the person is unwell enough to die and we need to make a plan for that. That is ok.
If we can as ED doctors, start an escalation plan including a DNACPR for patients moving onto our wards. This not only helps the patients and the families, but the staff who are looking after the patient elsewhere.
Communication is key. Once the cat is out of the bag i.e. they might die, there is no going back from there.
Remember to be clear; it’s Death, Dead, Dying!
Editor’s Note: “Having the conversation” with people can be difficult, if we make it difficult. You do need to be really clear it’s death, dead, dying – but also that a DNA CPR does not mean no treatment. It’s a change in the focus of treatment, as Matt Morgan beautifully writes in his BMJ letter here. Recognising “uncertain recovery” will help the patient prioritise their care from now- as emphasised in this twitter thread. There are some more excellent tips on having the conversation here. But also, be clear, that this is not a choice matter. It is a medical decision. A DNA CPR documents your family discussions, and your decision, as the health care professional, to allow the natural death you were aiming for. The discussion is not permission, it’s explanation, and fact finding.
Some useful resources
- Dykes, L. #havetheconversation. 2018
- Tucker L, Minton O. Induction Book 2: Palliative Care in the ED: 2018
- Royal College of Emergency Department (RCEM). End of Life Care for Adults in the Emergency Department: 2015.
- Keillor L. Lightning Learning: Treatment Escalation Planning. 2019
- Keillor L. Lightning Learning: Anticipatory Medications for End of Life. 2019