Talking with people and families about planning care, death and dying
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During the COVID-19 emergency, we need to talk with people who are deteriorating due to their underlying health problems and/ or infection with COVID-19 and their families using clear, sensitive and effective language.
Public information from NHS Inform supports these conversations (opens in new window).
RED-MAP is a 6-step approach to conversations about planning care, deteriorating health and dying developed in Scotland and with SPICT partners in the UK and internationally. It is suitable for all care settings.
R eady: Can we talk about your care and what coronavirus might mean for you?
E xpect: What do you know? What do you want to ask?
D iagnosis: What we know is…. What we don’t know is… What we are not sure about is…
M atters: What matters to you? What is important to you and your family if you get very unwell?
A ctions: What we can do to help is….This does not work/ help…..
P lan: Let’s make a plan for good care for you and your family.
– Each step in RED-MAP is important, as is the order of the steps.
– Suggested phrases are adapted to the person or family, place of care and context of the discussion.
– Always refer to the person by name when talking with their family or a close friend.
– If talking with people by phone: check you have the right person; ask if it is a good time; speak slowly in shorter sentences; check what’s been understood and how people are.
– Ask for help and support from colleagues, senior staff or a specialist. Seek a second opinion, if needed.[RED-MAP is part of the Building on the Best programme in Scotland, funded by Macmillan Cancer Support.]
|RED-MAP Guide for Professionals (general guidance - updated 8/4/20)|
Try to build a relationship. Eye contact and tone matter when wearing a mask.
* Hello Mr X, my name is..., I am (your title). My role in the team looking after you is….
Outline reason for discussion. Check who should be involved and how best to do that.
* It is important for us to talk about your treatment and care. Who else do we need to speak to?
* Who should we talk to if you are more unwell and can't make decisions with us?
* I'm sorry we are having to speak on the phone not in person at this difficult time.
* We are doing our best to care for (person's name), but we are worried about her condition.
Find out what people know and expect. Explore initial questions or worries.
* I’ll explain what is happening but do you have any important questions or worries just now?
* Can I ask, what you know about your health problems and how you are now?
* Do you know what an infection like Coronavirus might mean for (person's name)?
Share information tailored to people's current understanding of the situation and how they are feeling.
Explain what we know in small chunks with pauses to check for a response.
Acknowledge and share uncertainty. Keep terms clear and simple. Kindness makes a big difference to people.
* You are less well because…. Yes, (person's name) is seriously ill...
* We hope you will improve with these treatments, but I am worried about how you are doing...
* If this treatment does not help or stops working, it is possible you will not get better...
* I am sorry to tell you but (person's name) is very ill now… He could die with this illness…
Pause to let people take in the information. Then, find out what matters to this person and family.
* Can we talk about what's important for you now and what we can do to help?
* Please tell us how you'd like to be cared for so we can do our best to look after you and your family.
Talk about realistic, available options for treatment, care and support for people.
Be honest and clear about what will not work or help. Options depend on the best place of care.
* For people who already depend on others for care at home or in a care home, it may be better to care for them in a familiar place when they are very ill or dying, if that's possible.
* Intensive care and ventilation do not help everyone. If someone is frail or unwell from other health conditions, it is better to care for them in a different way. Could we talk about how we can do that?
* Has anyone spoken about cardiopulmonary resuscitation or CPR? CPR is a treatment to restart the heart. CPR does not work when a person is in very poor health or dying. We record this information and focus on what can help.
* I wish there was more treatment we could give... Can we talk about what we can do?
* Whatever happens, we will continue to care for you and your family.
* We will give treatment and care to manage symptoms like breathlessness, pain or distress.
* It is difficult when a person and their family can't be together. We will do our best to help with this.
* We don't know how quickly things will change, but we will update you and you can phone us too.
Use available forms and online systems to record and share care plans and DNACPR decisions.
* We record and share plans we make for treatment and care so everyone knows about them.
People are already anxious and afraid of what will happen. Use Realistic Medicine language. Avoid words and phrases that can make people feel abandoned or deprived of treatment and care.
There is nothing more we can do. Ceiling of treatment or treatment limits for a person.
We are withdrawing treatment. Further treatment is futile. …. the chance of this working…
NHS Education Scotland module – Shared decision-making, 2019 (opens in new window)
Talking about medications for symptoms and/or palliative care comes after we have shared information and any bad news so people know that a person is very unwell and could die.
Identify people at high risk from COVID-19
There are groups of people at increased risk of becoming seriously unwell from coronavirus or other infections including older people and people with some long term conditions or underlying health problems.
People whose health is already poor or deteriorating due to one or multiple health problems are at high risk. These people are already ‘ill enough to die’ in the next weeks or months. SPICT clinical indicators or the Electronic Frailty Index (eFI) help identify them.
Prioritise these people for Anticipatory/Advance Care Planning.
We can use SPICT-4ALL (lay language version) to help us explain to people and their families why planning ahead is even more important for them at this time.
Care Planning Steps
Identify – people at high risk of deteriorating and dying
Assess – current treatment and care; medications (stop if not needed, provide ‘just in case’ medicines)
Talk – about what is happening; what is important and what we can do to help (Use RED-MAP)
- holistic care (physical, psychological, family, practical, spiritual)
- for decision-making if the person lacks or will lose capacity
- current care; care at the end of life; care after death; bereavement support
Record plan – share with professionals and teams involved; keep plans updated
Use the Key Information Summary (KIS) and local electronic ACPs alongside written forms – DNACPR, ReSPECT, Treatment Escalation Limitation Plan (TELP), Treatment Escalation Plan.
Ask – for help if you need it. Look out for other staff you can support or help too.
(Open in new window)
Bereavement care (videos) for professionals.
Introducing RED-MAP (video)