Identifying people at the end of life

Early identification of those who are
approaching the end of their life will enable...
Top tips
l	Look for two or more general

indicators of deteriorating health:
l	Decreased activity – performance
status poo...
Having end of life care conversations
Many GPs have reported that they are not
confident initiating a conversation about e...
Top tips
l	Take opportunities as they arise rather

than waiting for perfection – an
end of life care conversation (and
do...
Putting plans in place
Planning is crucial to ensure that people can have
what they consider to be a ‘good death’. Advance...
Top tips
l	It is essential that discussions are

considered early for people with
deteriorating cognitive function

l	Ask ...
Managing and co-ordinating care
Co-ordinating a person’s end of life care can help to
reduce unnecessary or unwanted treat...
Top tips
l	Identify a key GP for each person

in the last year of life and ensure
handover happens regularly, both
within ...
Local information

Here you can record details of local services and
support organisations. Remember to include
out of hou...
Useful contacts

Adult social care:	

Pharmacies with palliative care drugs:

Other useful contacts:	

District nurses:		
...
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Identifying people at the end of life

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Early identification of those who are
approaching the end of their life will enable
more people to be supported in living well
before they die, ensuring that they have access
to appropriate care and support services.

Publication by the National End of Life Programme which became part of NHS Improving Quality in May 2013

Published in: Health & Medicine
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Identifying people at the end of life

  1. 1. Identifying people at the end of life Early identification of those who are approaching the end of their life will enable more people to be supported in living well before they die, ensuring that they have access to appropriate care and support services. Useful resources 1. Prognostic Indicator Guidance Gold Standards Framework www.goldstandardsframework.org.uk/LibraryofResourcesPresentationsandLinks 2. Quick guide to identifying patients for supportive and palliative care Macmillan Cancer Support, NHS Camden & NHS Islington www.endoflifecare.nhs.uk/quick-guide-to-identifying-patients 3. Supportive & Palliative Care Indicators Tool (SPICT) NHS Lothian and The University of Edinburgh www.spict.org.uk
  2. 2. Top tips l Look for two or more general indicators of deteriorating health: l Decreased activity – performance status poor or deteriorating, with limited reversibility (needs help with personal care, in bed or chair for 50% or more of the day) l Two or more unplanned hospital admissions in the past 6 months l Weight loss (>10%) over the past 3-6 months and/or body mass index <20 l Persistent, troublesome symptoms despite optimal treatment of any underlying condition(s) l Lives in a nursing care home or NHS continuing care unit, or needs care to remain at home l Patient requests supportive and palliative care, or treatment withdrawal. l Look for clinical indicators of advanced conditions – dementia, frailty, cancer, neurological, respiratory, heart, kidney and liver disease (see useful resources) l Are they considered eligible for DS1500 payment? l Do they have co-morbidities (more than one life-threatening illness)? l Has the burden of illness increased (physical, psychological, financial or other)? Or do they require increasing social care support? l Ask yourself the surprise questions: l Would it be no surprise if they were to die in the next 6-12 months? l Would it be a surprise if they were to live longer than 6-12 months (higher priority)? Only about 25% of people who die each year are on an electronic palliative care co-ordination system (EPaCCS). The majority that are included have a cancer diagnosis, even though cancer results in less than 30% of all deaths. Identifying people approaching the end of life, having conversations and ensuring their wishes and preferences are recorded on an EPaCCS will enable more people to achieve a ‘good death’. Ref: PB0048 A 10 12 ©National End of Life Care Programme 2012 All rights reserved. For full Terms of Use please visit www.endoflifecare.nhs.uk/terms-of-use.aspx
  3. 3. Having end of life care conversations Many GPs have reported that they are not confident initiating a conversation about end of life care preferences and wishes. We know that if they do, 90% of patients will continue the conversation and most GPs report relief and satisfaction afterwards (Dying Matters GP Pilot Project Evaluation, 2010-11). Useful resources 1. Finding the words workbook and DVD National End of Life Care Programme www.endoflifecare.nhs.uk/finding-the-words 2. Tips for ACP for GPs Macmillan Cancer Support, NHS Camden & NHS Islington www.endoflifecare.nhs.uk/acp-tips-for-gps 3. Free e-learning sessions on communication skills e-ELCA www.e-lfh.org.uk/projects/e-elca 4. Leaflets on talking about death, dying and bereavement Dying Matters www.dyingmatters.org/page/dying-matters-leaflets 5. ‘How long have I got, Doc?’ DVD Dying Matters www.dyingmatters.org/gp_page/dvd
  4. 4. Top tips l Take opportunities as they arise rather than waiting for perfection – an end of life care conversation (and documentation) can evolve over time l Asking permission engages the patient – when proposing an option describe, jargon free, whatever it is you are asking permission for and then ask ‘are you okay with that?’ l Use phrases that you’re comfortable with in everyday consultations: l ‘What’s the main thing on your mind?’ l ‘What’s your greatest concern?’ l ‘How do you see the future?’ l ‘What’s important to you?’ l Have an information pack ready to give further details if needed, for example on will writing, Lasting Power of Attorney, benefits and allowances, how to talk to children and families about death l If you don’t feel you have the time or skills to discuss in detail you can reschedule – try ‘sounds like we should make time to talk about that properly’ or ‘I’ll find out who can help you with that‘ l Sometimes people are not ready to talk about their end of life care but you won’t know if you don’t ask – at the very least they will know you will be there to talk to when they are ready (see useful resource 4) l Things aren’t set in stone – discussing the future and end of life care is an ongoing conversation which can be revisited Taking time to listen and paying attention to non-verbal cues will help you to pick up on how much or little information a person wants and can handle. Information and advice is more likely to be both heard and absorbed if it: l Is delivered in manageable chunks l Is tailored to the needs of the individual person l Allows any resultant concerns and feelings to be acknowledged. Ref: PB0048 A 10 12 ©National End of Life Care Programme 2012 All rights reserved. For full Terms of Use please visit www.endoflifecare.nhs.uk/terms-of-use.aspx
  5. 5. Putting plans in place Planning is crucial to ensure that people can have what they consider to be a ‘good death’. Advance care planning (ACP) is a process of discussion and review to help a person who has capacity anticipate how their condition may affect them in the future. If they wish, they can set on record choices about their care and treatment. Useful resources 1. Preferred Priorities for Care (PPC) – available in easy-read National End of Life Care Programme (NEoLCP) www.endoflifecare.nhs.uk/ppc 2. Planning for your future care – available in other languages NEoLCP, Dying Matters and University of Nottingham www.endoflifecare.nhs.uk/planning-for-your-future-care 3. Free e-learning sessions on advance care planning e-ELCA www.e-lfh.org.uk/projects/e-elca 4. Capacity, care planning and advance care planning in life limiting illness NEoLCP www.endoflifecare.nhs.uk/acp-guide 5. Advance decisions to refuse treatment – guide and proforma NEoLCP www.endoflifecare.nhs.uk/adrt-guide
  6. 6. Top tips l It is essential that discussions are considered early for people with deteriorating cognitive function l Ask yourself: l Do you know your patient’s preferred place of death? l If they are at home can they manage with the current level of health and/or social care support? l Do they know who to contact in an emergency/out of hours? l Has Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) been discussed? l Have any advance statements and/ or advance decisions to refuse treatment been recorded? l Have they appointed a Lasting Power of Attorney? l To describe ACP to a patient, try ‘It gives you the opportunity, if you wish, to discuss any preferences you might have if your health was to deteriorate in the future’ l Using a range of ACP documentation l GP records, electronic palliative care co-ordination systems and out of hours handover forms must be kept up to date in line with care plans l Work with local nursing/care homes – staff can discuss ACP with patients and families in advance of a GP visit l Regular monthly visits to nursing/care homes can proactively address ACP and ensure that plans reflect current wishes and preferences. can provide a structured approach to good person held records e.g. Preferred Priorities for Care Ref: PB0048 A 10 12 ©National End of Life Care Programme 2012 All rights reserved. For full Terms of Use please visit www.endoflifecare.nhs.uk/terms-of-use.aspx
  7. 7. Managing and co-ordinating care Co-ordinating a person’s end of life care can help to reduce unnecessary or unwanted treatments, visits and emergency admissions. Sharing information with key colleagues across both health and social care will help ensure that needs are met and preferences and wishes are respected, enabling more people to die in their preferred place. Useful resources 1. End of life care information standard (ISB 1580) National End of Life Care Programme (NEoLCP) www.endoflifecare.nhs.uk/information-standard 2. Making the case for change: Electronic Palliative Care Co-ordination Systems NEoLCP www.endoflifecare.nhs.uk/epaccs-case-for-change 3. Free e-learning sessions e-ELCA www.e-lfh.org.uk/projects/e-elca 4. Learn Zone Macmillan http://learnzone.org.uk 5. ‘Just in Case 4 Core Drugs’ Documentation (2012) Trinity Hospice (Blackpool) www.trinityhospice.co.uk/healthcare-professionals/resources-for-healthcare-professionals
  8. 8. Top tips l Identify a key GP for each person in the last year of life and ensure handover happens regularly, both within the practice and with out of hours/ambulance services l Does the patient require anticipatory medication prescribing – for pain, agitation, nausea, vomiting, breathlessness and secretions? l Electronic palliative care co-ordination systems (EPaCCS) (formerly end of life care registers) are embedded in the Quality and Outcomes Framework (QOF) and should be coupled with multi-disciplinary team (MDT) meetings l Ensure that the EPaCCS is compliant with the information standard ISB 1580 which sets out the core content to be recorded l Before patients consent to be included on an EPaCCS, explain to them and their families what it means l Some areas have created information leaflets on EPaCCS and their benefits: l London’s Co-ordinate My Care: www.royalmarsden.nhs.uk/ consultants-teams-wards/clinicalservices/pages/coordinate-my-care. aspx l Medway’s My Wishes: www.medwaypct.nhs.uk/ EasySiteWeb/GatewayLink. aspx?alId=212167 l Patients can be identified on the EPaCCS to prioritise those who need to be discussed at MDT meetings based on clinical need l Have a named secretary/practice manager responsible for co-ordinating the MDT meetings and keeping the EPaCCS up to date. Ref: PB0048 A 10 12 ©National End of Life Care Programme 2012 All rights reserved. For full Terms of Use please visit www.endoflifecare.nhs.uk/terms-of-use.aspx
  9. 9. Local information Here you can record details of local services and support organisations. Remember to include out of hours contact details, including specialist palliative care, pharmacies, social care and district nursing services. Useful contacts Hospice: Specialist palliative care: GP out of hours: Ambulance service:
  10. 10. Useful contacts Adult social care: Pharmacies with palliative care drugs: Other useful contacts: District nurses: Funeral directors: Register office: Coroners court: Bereavement support: Ref: PB0048 A 10 12 ©National End of Life Care Programme 2012 All rights reserved. For full Terms of Use please visit www.endoflifecare.nhs.uk/terms-of-use.aspx

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