UK resources for professionals

  • Good life, Good Death, Good Grief  Resources for the public, patients, families and professionals (Scotland)
  • Dying Matters  Resources for the public, patients, families and professionals (UK)
  • Early Palliative Care (Video resources for professionals, patients and families)

Talking about future care – resources on advance/ anticipatory care planning

  • REDMAP framework Communication with patients and families about deteriorating health and future care planning

Using REDMAP video: Royal College of Physicians and Surgeons of Glasgow
ACP-TALK video: Staying in my Care Home or Going to Hospital (Pre-Covid)
ACP-TALK video: Care in the Last Days of Life (Pre-Covid)

Shared Decision-Making

NHS Scotland – Realising Realistic Medicine, 2017

NHS Education for ScotlandHaving realistic conversations (DECIDE model)

NHS England – Resources on shared decision-making

Choosing Wisely UK – questions to ask your doctor or nurse about tests and treatments

National Institute for Clinical Excellence (NICE), UKShared decision-making

Cochrane UKSharing health evidence

Mayo Clinic, USA – Shared Decision Making National Resources Center

Ottawa Hospital Research Institute, Canadapatient decision aids

Communication and patient experiences – references and resources

Leaflet for patients and families: What happens when someone is dying.

Kimbell B, Murray SA, Macpherson S, Boyd KJ. Embracing inherent uncertainty in advanced illness. BMJ 2016; 354 doi:

– Jacobsen J, Brenner K, Greer JA, Jacobo M, Rosenberg L, Nipp RD, Jackson VA. When a patient is reluctant to talk about tt: A Dual Framework to focus on living well and tolerate the possibility of dying. J Palliat Med. 2018 Mar;21(3):322-327. doi: 10.1089/jpm.2017.0109. Epub 2017 Oct 3. PMID: 28972862.
– 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 R, Hutchings M, Vick J, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open 2015;5:e009032. doi:10.1136/bmjopen-2015009032
– Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practice. JAMA Int Med 2014;174:1994-2003.

– Pino M, Parry R, Land V, Faull C, Feathers L, Seymour J. Engaging Terminally Ill Patients in End of Life Talk: How Experienced Palliative Medicine Doctors Navigate the Dilemma of Promoting Discussions about Dying. PLoS ONE 2016; 11(5): e0156174. doi:10.1371/journal.pone.0156174
– 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.

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;

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)