Talking with people and families about planning care, death and dying
[This page and resources are being developed using rapid peer review and consensus involving senior clinicians from primary and secondary care, other professionals and third sector organisations in the UK]
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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 (September 2020)
DECIDE: Guide for shared decision-making discussions about treatment/care options: DECIDE Poster (December 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? Has anything changed? Who should be involved?
E xpect: What do you know? What do you think might happen? Is there anything you want to ask/tell me?
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)?
How would you like to be cared for? Is there anything you don’t want?
What would she say about this situation, if we could ask her?
A ctions: What we can do to help is….Options we have are…. This does not work when/if/because…..
P lan: We can make a plan for treatment and care for you, and share it so everyone knows what to do.
– Each step in RED-MAP is important, as is the order of the steps.
– We adapt suggested phrases in each step to the person or family, their situation, place of care, and phase of illness.
– 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 Hospital Professionals (September 2020)
Key Steps for Care Planning in Hospital (January 2021) UPDATED
Care Planning in Hospital (Leaflet for patients, families and staff; April 2020)
Treatment escalation planning in hospital – education videos from NHS GGC (Sept 2020)
Dr McNally talks with Malcolm, an elderly man admitted with pneumonia, and his son Eric.
Video 1: Talking with Malcolm. (opens in new window)
Video 2: Talking with Eric by phone. (opens in new window)
RED-MAP Guide for Community Professionals (September 2020)
Key Steps for Care Planning in the Community (January 2021) UPDATED
Guidance for GP practices on ACP conversations with people with dementia (Chief Medical Officer, August 2020)
RED-MAP Guide to Talking with Care Home Residents about ACP (May 2020)
RED-MAP Guide to Talking with family/friends of Care Home Residents about ACP (May 2020)
Key Steps for Care Planning in Care Homes (clinical staff) (January 2021) UPDATED
Care planning for Care Staff (being developed)
– ACP in Care Homes – 7 Steps ACP Implementation Guidance & Resources (NHS Lothian – June 2020)
Care homes ACP Toolkit for Primary Care Teams (NHS Lothian July 2020)
– 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)
Communication with PPE
Communicating in a mask (NHS Scotland)
ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) process – Resuscitation Council UK
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 he ‘want 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)
Advance/anticipatory care planning (ACP)
People whose health is already poor or deteriorating are at risk of acute health crises and/or dying with underlying conditions.
They may have a serious illness (eg cancer, organ failure or neurological conditions), multiple advanced health conditions, dementia or general frailty in older age. Many are at increased risk during COVID-19.
Prioritise these people for care planning and/or palliative care.
We can use the SPICT indicators for general and advanced health conditions to help us identify them.
SPICT-4ALL: in lay language is for care workers, patients and families to encourage them to ask for extra help and support.
Making a prognostic judgement for an individual based on population life-expectancy data is unhelpful. Look for:
– Burden of illness and health-related suffering (SPICT).
– Trigger events/interventions (e.g. hospital or care home admission; needing personal care equipment at home).
– Functional decline (e.g. Australia-modified Karnofsky Scale, ECOG tool)
– Signs of unstable/declining health (e.g. Palliative Care Phase tool).
– Patient-reported outcome measures of multidimensional needs (e.g. IPOS)
Care Planning Steps
People at risk of deteriorating and dying from underlying health problems, complications, or other illnesses including coronavirus.
– usual health status, severity of underlying conditions/degree of frailty, decision-making capacity
– current treatment & care plans (including any ACP document, ReSPECT form, or DNACPR form)
– clinical outcomes of possible interventions (e.g. cardiopulmonary resuscitation [CPR], oxygen, hospital admission, 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 this person would like to be cared for. Is there treatment/care they do not want?
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 (as part of a wider ACP discussion) 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/or a close friend if wished.
Record & Update plans – 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 (7-Steps Planning).
Ask – for help if you need it. Look out for other staff you can support or help too.
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National Wellbeing Hub
(For people working in Health or Social Care in Scotland)
Scottish Palliative Care Guidelines (COVID-19 prescribing guidance)
My COVID-19 ACP
(May 2020 – NHS England)
RCGP/Marie Curie Core Standards for Primary Care in advanced illness).
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)