Talking with people and families about planning care, death and dying
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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 Anticipatory/Advance 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 that was developed in Scotland and with SPICT partners in the UK and internationally. It is now used in all care settings.
R eady: Can we talk about your health and care, and what coronavirus might mean for you?
E xpect: What do you know? What do you think might happen? Do you have any questions or worries?
D iagnosis: What we know is…. What we don’t know is… We are not sure about…
M atters: What’s important to you (and your family) if you were to get unwell/very ill?
How would you like to be cared for? Is there anything you don’t want?
A ctions: What we can do to help is….Options we have are…. This does not work or help when/if/because…..
P lan: We can make a plan for treatment and 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; keep checking 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 (developed by Dr Kirsty Boyd) is part of the Building on the Best quality improvement programme in Scotland.
[Funded by Macmillan Cancer Support.]
RED-MAP is recommended by: Royal College of Physicians & Surgeons Glasgow, Royal College of General Practitioners, Healthcare Improvement Scotland, NHS Education for Scotland, Association for Palliative Medicine.
RED-MAP Guide for Professionals (opens in a new page)
Anticipatory Care Planning in the Community – Key Steps for Clinicians (27/5/20)
RED-MAP Guide to Talking with Care Home Residents about ACP (19/5/20)
RED-MAP Guide to Talking with family/friends of Care Home Residents about ACP (19/5/20)
Anticipatory Care Planning in Care Homes – Key steps for clinical staff (3/6/20)
Making Anticipatory Care Plans – Key Steps for Care Staff (being developed)
– ACP in Care Homes – 7 Steps ACP Implementation Guidance & Resources (NHS Lothian – June 2020)
– ReSPECT 2017 (NHS Forth Valley, NHS Borders)
– Standard Operating Procedure for ACP & Clinical Portal (NHS GGC – Nov 2019)
Delivering news of a death by telephone (NHS Education Scotland: Support Around Death – video and poster
Telling relatives by phone about death of a patient from COVID-19. (Oxford University)
Talking with relatives by phone when a patient is very ill and may die (West Middlesex Trust)
|RED-MAP Guide for Professionals (general guidance - updated 8/6/20)|
Try to build a relationship. Eye contact and tone matter when wearing a mask.
* Hello, Mrs J/ Hello, is that Mr RT? 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?
* Talking about what's happening and thinking ahead helps people get better care.
* We can make a care plan with you in case you get unwell for any reason.
* I'm sorry we have to speak on the phone not in person/ face-to-face.
* 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 questions or worries you want to tell me about first?
* Can I ask, what you know about your health problems and how you are now?
* Do you know what the Coronavirus situation might mean for you?
* What do you know about treatment/care if people have the Coronavirus infection/other health problems?
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; even more important on the phone.
Acknowledge and share uncertainty. Keep terms clear and simple. Kindness makes a big difference to people.
* How we care for people is different due to the virus, for you that might mean...
* 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… He could die with this illness…
Pause to let people take in the information/respond. 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. Is there anything you do not want for your treatment or care?
Talk about realistic, available options for treatment, care and support for this person and their family.
Be honest and clear about what can work or will not help them. Options depend on the best place of care.
* For people who already depend on others for day to day living and need help/care at home or in a care home, it may be better to look after them in a familiar place when they are very ill or dying, if that's possible.
* Going to hospital has benefits and risks so let's talk about what that might mean for you?
* I wish we were able to give you that treatment/care. Can we talk about the options we do have?
* Giving oxygen with a breathing machine can help some people with infections like coronavirus get better, but usually means being cared for in a hospital isolation ward.
* Intensive care and ventilation do not help everyone. If someone is frail or unwell from other health conditions, it may be better to care for them in different ways. Could we talk about how we can do that?
* Has anyone talked with you about cardiopulmonary resuscitation or CPR?
CPR is a treatment to restart the heart and breathing. It works for some people but not for everyone.
- CPR does not work when a person is in very poor health or dying. If CPR will not work, we record this information and focus on planning good care.
- With these health problems, CPR may work but can leave a person in much poorer health which they might not want.
- Any other treatments that can help the person are continued/given.
* I wish there was more treatment we could give... Could we talk about the things we can do to help you?
* We always give treatment and care for any symptoms like breathlessness, pain or distress, if they are needed.
* It is difficult when restrictions mean families can't visit as usual. What we can do about this is...
* 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 anticipatory care plans and DNACPR decisions.
* We record and share the plans we make for treatment and care so everyone knows about them.
Avoid language that can make people feel confused, abandoned or deprived of treatment and care.
There is ‘nothing more’ we can do. ‘Ceiling’ of treatment or care for a person.
We are ‘withdrawing’ treatment. Treatment is ‘futile’. Would you like to be resuscitated?
See: NHS Education for Scotland (NES) module – Shared decision-making, 2019
ANZICS guide to recommended language (available from RCP London: Acute care resource)
Care Planning Steps
People at risk of deteriorating and dying from current health problems and/or coronavirus.
– usual health status, severity of underlying conditions/degree of frailty, decision-making capacity
– current treatment & care plans (including any ACP, ReSPECT form, DNACPR form)
– clinical outcomes of interventions (eg CPR, oxygen, hospital care/ITU referral)
Talk – about what is happening, what’s 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.
Actions to plan
-Place of care if more unwell
-Specific plans for sudden illness, complications, infection (including COVID-19), care if dying.
-Use RED-MAP to talk about 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/ close friend if wished.
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 Plans (TEP, TELP), Anticipatory Care Planning Questions.
Ask – for help if you need it. Look out for other staff you can support or help too.
(Open in new window)
National Wellbeing Hub
(For people working in Health or Social Care in Scotland)
Scottish Palliative Care Guidelines (COVID-19 prescribing guidance)
ReSPECT (2017): plus COVID-19
Talking to children about illness
(British Psychological Society)
Keeping in touch when someone may die
(National Bereavement Alliance)
Anticipatory Care Planning:
What, why & how of ACP
(RCPE podcast, April 2020)
SPICT (Supportive & Palliative Care Indicators Tool)
Other EC4H Resources
Real Talk (evidence-based clinical communication guidance)