People whose health is already poor or deteriorating are at risk of acute health crises and/or dying from underlying conditions.
They may have a serious illness (eg cancer, organ failure or neurological conditions), multiple health conditions, dementia or general frailty in older age, or chronic infections such as TB or HIV. 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 2019: in many languages including English, French, German, Italian, Spanish, Portuguese, Dutch, Danish and Swedish.
*SPICT-LIS: is 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.
Making a prognostic judgement for an individual based on population life-expectancy data is unhelpful. Look for:
– Burden of health-related suffering (based on clinical indicators like SPICT).
– Triggers events/interventions (e.g. a hospital/care home admission, needing personal care at home).
– Functional decline (e.g. Australia-modified Karnofsky Performance Scale) [Reference].
– Stage of illness (e.g. Palliative Care Phase Tool) [Palliative Care Outcomes Collaboration]– Patient-reported outcome measures of multidimensional needs (e.g. IPOS)
Care Planning Steps
People at risk of deteriorating and dying from current health problems, complication, or other illnesses including coronavirus.
Assess and Prepare
– usual health status, severity of underlying conditions/general frailty, decision-making capacity/healthcare proxy
– current treatment & care plans (including any advance (anticipatory) care plan or resuscitation status form)
– likely clinical outcomes of possible interventions (eg cardiopulmonary resuscitation, 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 this person would like to be cared for. Is there treatment/care they do not want?
Plan – actions that will be over overall benefit to this person.
-Place of care if the person is 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 CPR would not work or leave the person in much poorer health.
-Review medications; plan for anticipatory/ emergency medicines, if appropriate.
-Holistic care (physical, psychological, family, practical, spiritual)
– Offer to speak on the phone with family/a close friend, if appropriate.
Coordinate care – record and share care plans with professionals and teams who need 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 (Sept 2020)
DECIDE: Guide for shared decision-making discussions about treatment/ care options. DECIDE Poster (Dec 2020)
[developed with NHS Education for Scotland].
EC4H tutors’ presentation (video) – Having realistic conversations: shared decision-making in practice (2019)
Good Life, Good Death, Good Grief (Public information on death and bereavement).
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 health and care and what the coronavirus situation might mean for you?
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… What we are not sure about is…
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?
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 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; 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 Hospital Professionals (Sept 2020)
Key Steps for Care Planning in Hospital (Jan 2021) UPDATED
Care Planning in Hospital (Leaflet for staff to use in discussions with patients – April 2020)
RED-MAP Guide to talking with care home residents about care planning (19/5/20)
RED-MAP Guide to talking with family/friends of care home residents about care planning (19/5/20)
Key Steps for Care Planning in Care Homes(Jan 2021) UPDATED
Talking with people by phone (general tips & advice – poster 28/4/20)
Telling relatives by phone about death of a patient from COVID-19. (Oxford University)
Healthcare Improvement Scotland (ihub) (Anticipatory Care Planning for COVID-19)
Avoid words and phrases 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?’
NHS Education for Scotland (NES) module – Shared decision-making, 2019 (opens in new window)
ANZICS (Australia and New Zealand Intensive Care Society) Guidance: Communication in critical illness.
(Open in new window)
Cecily Saunders Institute (London, UK)
European Association for Palliative Care (EAPC) – COVID-19 resources
CareSearch: Palliative Care Knowledge Network (Australia)
End of Life Directions for Aged Care (ELDAC) (Australia)
Palliative Care Toolkit
(Worldwide Hospice & Palliative Care Alliance)
COVID-19 Toolkit (e-book) (Low & middle income countries – May 2020)
Effective Communication for Healthcare (EC4H) Clinical communication in practice and education – resources for professionals.
Support Around Death Scotland (COVID-19, NHS Education Scotland)
VitalTalk: Communication resources for COVID (USA)
The Conversation Project (USA)
Real Talk UK (evidence-based clinical communication guidance)