Identification and care planning for people with advanced illness
People whose health is already poor or deteriorating are now at higher risk of dying from those conditions and/or with COVID-19. They may have a severe/serious illness (eg cancer or organ failure), multiple health conditions, general frailty in older age, or chronic infection.
Prioritise these people for advance (anticipatory) care planning and/or palliative care.
We can use the SPICT indicators for general and advanced health conditions to help us identify them:
*SPICT 2019: in many languages including English, French, German, Italian, Spanish, Portuguese, Dutch, Danish and Swedish.
*SPICT-LIS: for lower and middle income countries/settings.
*SPICT-4ALL: in lay language is for care workers, patients and families to encourage them to ask for extra help and support.
Some professionals and teams caring for older people also use a frailty tool (e.g. Clinical Frailty Scale, Electronic Frailty Index) or a performance status tool to help them identify people whose overall health is declining.
Making prognostic judgements for individuals based on population life-expectancy data is inaccurate. Looking at burden of health-related suffering and for signs of unstable/declining health are more valid and appropriate.
Care Planning Steps
People at risk of deteriorating and dying from current health problems and/or coronavirus.
– usual health status, severity of underlying conditions/general frailty, decision-making capacity
– current treatment & care plans (including any advance (anticipatory) care plan or resuscitation status form)
– clinical outcomes of interventions (eg CPR, oxygen, hospital care/ITU referral)
Talk – about what is happening, what is important, and what we can do to help.
Involve the person and those close to them. Find out how they would like to be cared for, and things they do not want.
Actions to plan
-Place of care if more unwell or likely to be dying
-Specific plans for sudden illness, complications, infection (including COVID-19); end-of-life care plan if dying.
-Talk about cardiopulmonary resuscitation (CPR) if it would not work or leave the person in much poorer health.
-Review medications; plan for anticipatory medicines, if appropriate.
-Holistic care (physical, psychological, family, practical, spiritual)
– Offer to speak on the phone with family/a close friend, if appropriate.
Record plans – share with professionals and teams who need access to this information; keep plans updated
Ask – for help if you need it. Look out for other staff you can support or help too.
Talking about planning care, death and dying
It has always been important for us to talk with people whose health is deteriorating gradually or more rapidly due to underlying health problems about care planning and what matters to them, and to involve families. During the COVID-19 epidemic, we need to communicate using clear, sensitive and effective language while also doing our best to adapt to PPE and visiting limitations.
RED-MAP: Guide for Advance (Anticipatory) Care Planning (ACP) conversations. RED-MAP Poster (May 2020)
DECIDE: Guide for shared decision-making discussions about treatment/ care options. (DECIDE card – 2020)
[developed with NHS Education for Scotland].
EC4H tutors’ presentation (video) – Having realistic conversations: shared decision-making in practice (2019)
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 (updated 7/5/20)
RED-MAP Guide for Hospital Professionals (updated 15/5/20)
Advance (Anticipatory) Care Planning in Hospital: Leaflet for staff to use in discussions with patients. (revised April 2020)
|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. 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 for Scotland (NES) module – Shared decision-making, 2019 (opens in new window)
ANZICS Guidance on communication in critical illness.
(Open in new window)
Anticipatory Care Planning:
What, why & how advice
(RCPE podcast, April 2020)
Support Around Death Scotland
(new and previous NES videos)
Scottish Palliative Care Guidelines (COVID-19 prescribing guidance)
ReSPECT Care Planning in COVID-19
Talking to children about illness
(British Psychological Society)
Talking with relatives by phone (poster)
Keeping in touch when someone may die
(National Bereavement Alliance)
Allowing families to visit dying relatives (RCPE for Scottish Academy of Medical Royal Colleges)
SPICT (Supportive and Palliative Care Indicators Tool)
Introducing RED-MAP (video)
Real Talk (evidence-based clinical communication guidance)