- General Medical Council. Treatment and care towards the end of life: good practice in decision making. London , GMC, 2010. (Guidance on high quality care and shared decision-making.)
- Royal College of General Practitioners: Palliative and end of life care toolkit.
- Scottish Government: Strategic Framework for Action on Palliative & End-of-Life Care (2015)
(Recommends SPICTTM as a tool for identifying patients with deteriorating health and those with palliative care needs) - British Medical Association Report: End-of-life care and physician-assisted dying (2016). (No prognostic tools accurately predict when individual people with advanced illnesses will die but give a population risk. (Volume 1:Part 4, page 57)).
- NHS Scotland Knowledge Network – Palliative Care Portal
- NHS Education Scotland Resources for Professionals on Bereavement – Support Around Death
- Hospice UK
- Scottish Partnership for Palliative Care
- Good life, Good Death, Good Grief – Resources for the public, patients, families and professionals
- Dying Matters – Resources for the public, patients, families and professionals
- The Gold Standards Framework in End-of-life Care
- Marie Curie Palliative Care Knowledge Zone
- Macmillan Cancer Support LEARNZONE
- Palliative Care Outcome Scale (POS)
- Building on the Best (introductory video for professionals) – Improving communication with patients and families about deteriorating health and future care planning in hospital or when back home including: the RED-MAP Communication Guide
ACP-TALK 1 video: Back Home from Hospital
ACP-TALK 2 video: Staying in my Care Home or Going to Hospital
ACP-TALK 3 video: Care in the Last Days of Life
- Early Palliative Care – BMJ Analysis by Murray & Boyd (2017) discussing the benefits of early identification, holistic assessment and care planning for people living and dying with different conditions and illness trajectories
Educational video resources for use with professional groups and public awareness events are available in several languages.
- EAPC Taskforce in Primary Palliative Care:
EAPC toolkit for the development of palliative care in the community - European Association for Palliative Care
- Integrated, People-centred Palliative Care
Resources from the WHO Collaborating Centre for integrated health services based in primary care - The Palliative Care Phase project (Australia) – each phase identifies a clinically meaningful definition of the patient’s care
- Shared decision-making about CPR in the hospital setting: a teaching package (Western Australia) – Supports clinicians and medical students to develop the knowledge, skills and confidence to initiate and engage in patient-centred conversations about CPR decision-making, particularly for those patients who have progressive deteriorating illness and are unlikely to do well with CPR;
- The Advance Project (Australia) – Training videos and resources for community professionals to promote earlier identification in primary care of people who can benefit from advance care planning and palliative care
- Ottawa Hospital Research institute (Canada) – Shared decision making programme
Ottawa Personal Decision Guide - Mayo Clinic (USA) – Shared decision making resource center
- Effective Communication for Healthcare (Scotland) Advanced communication education programme offers advanced communication training workshops for health professionals on many topics including ‘Talking about deteriorating health, dying and ‘what matters” and resources about Anticipatory Care Planning.
- Health Improvement Scotland (Living Well in Communities) – Anticipatory Care Planning Programme – Patient-held ‘MyACP’; resources for patients & families and health and care professionals.
- Thinking ahead (Planning for death & dying) (Ireland) – Resources and advice for the public and professionals from the Irish Hospice Foundation
- Let’s talk about death and dying (UK)- booklet and video resources for patients and families from Age UK
- Sensitive and effective conversations after severe stroke (Scotland) – resources for professionals from Chest, Heart & Stroke Scotland
- The Conversation Project (USA)
- Respecting Choices Advance Care Planning Programme (USA)
- Serious Illness Care Program (Boston) – Resources and training in talking about serious illness
- Vital Talk (USA) – Clinical communication resources and training
- Stanford Letter Project (USA)
- CLEAR Conversations Project (USA)
- Best Case/ Worst Case Communication Tool (USA) – Structured approached based on a graphic decision-aid to support difficult conversations about high risk surgical interventions with people whose outcomes are likely to be poor.
Tools
- Highet G, Crawford D, Murray SA, Boyd K. Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): a mixed-methods study. (Development & evaluation of SPICT)
BMJ Support Palliat Care Published Online First: 25 July 2013 doi:10.1136/bmjspcare-2013-000488. - Fachado AA, Martínez NS, Roselló MM, Rial JJV, Oliver EB, García RG,García JMF. Spanish adaptation and validation of the Supportive & Palliative Care Indicators Tool – SPICT-ESTM. Rev Saude Publica. 2018; 52: 3. Published online 2018 Jan 16. doi: 10.11606/S1518-8787.2018052000398
- Afshar K, Feichtner A, Boyd K, Murray S, Jünger S, Wiese B, Schneider N, Müller-Mundt G. Systematic development and adjustment of the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE). BMC Palliative Care 2018;17:27.
https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-018-0283-7 - Boyd K, Murray SA. Recognising and managing key transitions in end of life care. BMJ 2010;341:c4863
(Original version of the SPICT tool) - Maas E, Murray SA, Engels Y, Campbell C. What tools are available to identify people with palliative care needs in primary care: a systematic review and survey of European practice. BMJ Supportive & Palliative Care 2013;3:444–451.
- Walsh RI, Mitchell G, Francis L, Van Driel ML. What diagnostic tools exist for the early identification of palliative care patients in primary care: a systematic review. Journal of Palliative Care 2015;31(2):118-123.
- Downar J, Goldman R, Pinto R, Englesakis M, Adhikari NK. The “surprise question” for predicting death in seriously ill patients: a systematic review and meta-analysis. Canadian Medical Journal. 2017 Apr 3;189(13):E484-E493. doi: 10.1503/cmaj.160775.
- Gomez-Batiste X et al. Identifying patients with chronic conditions in need of palliative care in the general population: development of the NECPAL tool and preliminary prevalence rates in Catalonia. BMJ Supportive & Palliative Care 2012; doi:10.1136/bmjspcare-2102-000211.
- Lynn J. Serving patients who may die soon: the role of hospice and other services. JAMA 2001; 285:925-932.
- Weissman D E, Meier DE. Identifying patients in need of a palliative care assessment in the hospital setting. J Palliat Med 2011; 14(1): 17-23.
Clifford C, Thomas K, Armstrong-Wilson J. Going for Gold: the Gold Standards Framework programme and accreditation in primary care. End Life J 2016; 6:e000028. doi:10.1136/eoljnl-2016-000028
Other references
- De Bock, R, Van Den Noortgate, N, Piers, R.Validation of the Supportive and Palliative Care Indicators Tool in a Geriatric Population. J Palliat Med 2018;21(2):220-224. DOI: 10.1089/jpm.2017.0205. (Validation study of elderly patients admitted to hospital geriatric unit with uncertain prognosis – overall one-year mortality 32.2%, 48.7% in SPICT-positive patients, and 11.5% in SPICT-negative patients (p < 0.001). SPICT predicted one-year mortality with a sensitivity of 0.841 and a specificity of 0.579.)
- Liyanage T, Mitchell G, Senior H. Identifying palliative care needs in residential care. Australian Journal of Primary Health Research. 2018 24(6) 524-529 https://doi.org/10.1071/PY17168 (Cohort study of 187 cases using the Surprise Question combined with SPICT indicators to screen residents and predict risk of dying within 12 months – sensitivity 71.4% (95%CI, 55.4–84.3%), specificity 66.2% (95%CI, 57.9–73.4%); positive predictive value is 38.0% (95%CI, 27.3–49.6%), negative predictive value 88.79% (95%CI, 81.4–94.1%))
- Mitchell GK, Senior HE, Rhee JJ, Ware RS, Young S, Teo PC, Murray S, Boyd K, Clayton JM. Using intuition or a formal palliative care needs assessment screening process in general practice to predict death within 12 months: A randomised controlled trial. Palliat Med. 2017 Mar 1:269216317698621. doi: 10.1177/0269216317698621. [Epub ahead of print]
- Sulistio M, Franco M, Vo A, Poon P, Leeroy W. Hospital rapid response team and patients with life-limiting illness: a multicentre, retrospective cohort study. Palliat Med 2015;29(4):302-309.
- Thoosen B, Groot M, Engles Y, Prins J, Verhagen S, Galesloot C et al. Early identification and proactive palliative care for patients in general practice, incentive and methods of a randomised controlled trial. BMC Family Practice 2011; 12:123
- Harrison N, Cavers D, Campbell C, Murray SA. Are UK primary care teams formally identifying patients for palliative care before they die? Br J Gen Pract 2012; DOI:10.3399/bjgp12X64146.
- Glare PA, Sinclair CT. Palliative medicine review: prognostication. J Palliat Med 2008; 11:84-103.
- Gott M, Ingleton C, Bennett M, Gardiner C. Transitions to palliative care in acute hospitals in England: qualitative study. BMJ 2011; 342:d1773.
- Lau F, Downing M, Lesperance M, Karlson N, Kuziemsky C, Yang J. Using the Palliative Performance Scale to provide meaningful survival estimates. J Pain Symptom Management 2009; 38:134-144.
- Coventry PA, Grande GE, Richards DA, Todd CJ. Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age and Ageing 2005; 34:218-227.
- Clark D, Armstrong M, Allan A et al. Imminence of death among hospital inpatients; a prevalence cohort study. Palliative Medicine 2014; doi: 10.1177/0269216314526443
- Smith C, Hough L, Cheung C-C et al. Coordinate My Care: a clinical service that coordinates care, giving patients choice and improving quality of life.BMJ Supportive & Palliative Care 2012; 2:301-307.
Leaflet for patients and families: What happens when someone is dying.
Parry R, Land V, Seymour J. How to communicate with patients about future illness progression and end of life care: a systematic review. BMJ Supportive Palliative Care 2014; doi:10.1136bmjspcare-2214-000649.
Kimbell B, Murray SA, Macpherson S, Boyd KJ. Embracing inherent uncertainty in advanced illness. BMJ 2016; 354 doi: https://doi.org/10.1136/bmj.i3802 (Published 18 July 2016)
Jackson VA, Jacobsen J, Greer JA et al. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: a communication guide. Journal of Palliative Medicine. 2013; 16(8):1-7.
Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practice. JAMA Int Med 2014;174:1994-2003.
Smith AK, White DB, Arnold RM. Uncertainty, the other side of prognosis. N Eng J Med 2013;368:2448-2450.
Kendall M, Carduff E, Lloyd A, et al. Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews with Patients with Cancer, Organ Failure or Frailty and Their Family and Professional Carers. J Pain Symptom Management 2015; http://dx.doi.org/10.1016/j.jpainsymman.2015.02.017
California Health Foundation. Gather Round: Understanding How Culture Frames End-of-Life
Choices for Patients and Families. 2014
Milford Care Centre: Compassionate Communities. Let’s talk about illness, death and dying
(Videos for patients, families and professionals: public awareness projects)
Alzheimer Scotland. Talking about death and dementia