Presentations from End of Life Care: Art or Science? London 2019


Reading list and references

Kath Webber

What’s new in End of Life Care?

Andrew Davies

What is a “good death”?

Paddy Stone


Paul Paes

Advanced Care Plans
  • Auriemma, C, Nguyen, C, Bronheim R, et al. Stability of End-of-Life Preferences: A Systematic Review of the Evidence. JAMA Intern Med. 2014; 174(7):1085–1092
  • Brinkman-Stoppelenburg, A, Rietjens, J. & van der Heide, A. The effects of advance care planning on end-of-life care: a systematic review. Palliative Medicine. 2014; 28(8): 1000-25
  • Calanzani, N, Moens, K, Cohen, J, et al. Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries. BMC Palliat Care. 2014;13:48
  • Churm, D. Advance Care Planning in Parkinson’s Disease. M.D. Thesis. 2016; Newcastle University
  • Davies, A, Todd, J, Bailey, F, et al. Good concordance between patients and their non-professional carers about factors associated with a ‘good death’ and other important end-of-life decisions. BMJ Supportive & Palliative Care. Published Online First: 17 May 2016
  • Drought, T, & Koenig, B. “Choice” in End-of-Life Decision Making: Researching Fact or Fiction? The Gerontologist. 2002; 42(3): 114–128.
  • Detering, K, Hancock, A, Reade, M. et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345.
  • Ebenau, A, & Gurp, J & Hasselaar, J. Life values of elderly people suffering from incurable cancer: A literature review. Patient Education and Counseling. 2017; 100. 10.1016/j.pec.2017.05.027.
  • Gomes, B, Calanzani, N, Gysels, M. et al. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care. 2013; 12, 7 doi:10.11861472-684X-12-7
  • Heffner, J, Nieterr, P, & Barbieri, C. Pleural fluid pH as a predictor of survival for patients with malignant pleural effusions. Chest. 2000; 117(1):79–86. doi: 10.1378/chest.117.1.79
  • Houben, C, Spruit, M, Groenen, M, et al. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc. 2014; 15(7): 477-89.
  • Johnson, S, Butow, P, Kerridge, et al. Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers. Psycho-Oncology. 2016; 25:362–386
  • Lamont, E, & Siegler, M. Paradoxes in Cancer Patients’ Advance Care Planning. Journal of Palliative Medicine. 2000; 3(1): 27-35
  • MacPherson, A, Walshe, C, O’Donnell, V, & Vyas, A. The views of patients with severe chronic obstructive pulmonary disease on advance care planning: A qualitative study. Palliative Medicine. 2013; 27(3): 265–272
  • Mulley, A., Trimble, C. & Elwyn, G. Patients’ preferences matter: stop the silent misdiagnosis. King’s Fund, 2012: London.
  • Murtagh, F, Bausewein, C, Petkova, H, et al. Understanding place of death for patients with non malignant conditions: a systematic literature review. Final report. NIHR service delivery and organisation programme: national institute for health research. 2012.
  • Parker, S, Clayton, J, Hancock, K. et al. A Systematic Review of Prognostic/End-of-Life Communication with Adults in the Advanced Stages of a Life-Limiting Illness: Patient/Caregiver Preferences for the Content, Style, and Timing of Information. Journal of Pain and Symptom Management. 2007; 34(1) 81 – 93
  • Pautex, S, Herrmann, F, & Zulian, G. Role of advance directives in palliative care units: a prospective study. Palliative Medicine. 2008; 22(7): 835–841.
  • Reynolds, K, Hanson, L, Henderson, M, et al. End-of-life care in nursing home settings: Do race or age matter? Palliative and Supportive Care. 2008; 6(1): 21-27.
  • Smucker, W, Ditto, P, Moore, K, et al. Elderly outpatients respond favorably to a physician-initiated advance directive discussion. Journal of the American Board of Family Practitioners. 1993; 6(5): 473-482
  • Temel, J, Greer, J, Admane, S, et al. Illness understanding in patients with advanced lung cancer. Journal of Clinical Oncology. 2009; 27:15_suppl, 9515-9515
  • van Wijmen, M, Pasman, H, Twisk, J, et al. Stability of end-of-life preferences in relation to health status and life-events: A cohort study with a 6-year follow-up among holders of an advance directive. PLoS ONE. 2018; 13(12):e0209315.
  • Virdun, C, Luckett, T, Davidson, P, et al. Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliative medicine. 2015; 29(9): 774-96
  • Wagner, D, Riopelle, D, Steckart, K, et al. Provider Communication and Patient Understanding of Life-Limiting Illness and Their Relationship to Patient Communication of Treatment Preferences. Journal of Pain and Symptom Management. 2010; 39(3): 527-34
  • Weeks, J, Catalano, P, Cronin, A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012; 367:1616–1625

Jo Thompson

Overview of symptoms at the end of life
  • Abshire M. et al (2015) Symptoms and fear in heart failure patients approaching end of life: a mixed methods study. Journal of Clinical Nursing 24(0) 3215-3223
  • Chan RJ, Webster J, Bowers A. End‐of‐life care pathways for improving outcomes in caring for the dying. Cochrane Database of Systematic Reviews 2016, Issue 2. Art. No.: CD008006. DOI: 10.100214651858.CD008006.pub4.
  • Clark K. et al (2016) Physical symptoms at the time of dying was diagnosed: A consecutive cohort study to describe the prevalence and intensity of problems experienced by imminently dying palliative care patients by diagnosis and place of care. Journal of Palliative Medicine 19(12), 1288-1295
  • Dickman A and Schneider J (2016) The Syringe Driver: Continuous Subcutaneous Infusions in Palliative Care. 4th Edn. Oxford University Press.
  • Graham F and Clark (2005) The syringe driver and the subcutaneous route in palliative: the inventor, the history and the implications. Journal of Pain and Symptom Management 29(1) 32-40.
  • Hui D et al (2015) Symptom expression in the last seven days of life among cancer patients admitted to acute palliative care units. Journal of Pain and Symptom Management 50(4) 488-494.
  • Kehl K. et al (2012) A systematic review of the prevalence of signs of impending death and symptoms in the last two weeks of life. American Journal of Hospice and Palliative Medicine 30(6) 601-616
  • Klinkenberg M et al (2004) Symptom burden in the last week of life. Journal of Pain and Symptom Management 27(1) 5-13.
  • Masman A. et al (2015) Medication use during end of life care in a palliative care centre. International Journal of Clinical Pharmacology 37, 767-775
  • National Institute for Health and Care Excellence (NICE) (2015) Care of dying adults in the last days of life (NG 31) available at (accessed 1st March 2019). Website resource.
  • Sampson E. et al (2018) Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life. Palliative Medicine 32(3), 668-681
  • Schmidt‐Hansen M, Bennett MI, Arnold S, Bromham N, Hilgart JS. Oxycodone for cancer‐related pain. Cochrane Database of Systematic Reviews 2017, Issue 8. Art. No.: CD003870. DOI: 10.100214651858.CD003870.pub6.
  • Soares L et al (2018) Prevalence and intensity of dyspnea, pain, and agitation among people dying with late stage dementia compared with people dying with advanced cancer: a single centre preliminary study in Brazil. Annals of Palliative Medicine 7(4)437-443.
  • Teunissen S et al (2007) Symptom prevalence in patients with incurable cancer: a systematic review. Journal of Pain and Symptom Management 34(1) 94-104.
  • Twycross R et al (eds) (2017) Palliative Care Formulary 6th edn.
  • Vivat B et al (2019) Palliative care specialists in hospice and hospital/community teams predominantly use low doses of sedative medication at the end of life for patient comfort rather than sedation: Findings from focus groups and patient records for I-CAN-CARE. Palliative Medicine 1-11.

##Charlotte Leach

“Death rattle”
  • Abernethy et al. Randomized, double blind, placebo-controlled crossover trial of sustained release morphine for the management of refractory dyspnoea. BMJ (Clinical Research Ed.) 2003; 327(7414): 523-528
  • Barnes et al. Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness. Cochrane Database of Systematic Reviews 2016. CD011008
  • Boland J, Currow D, Johnson M. Response to “Hyoscine Butylbromide for The Management of Death Rattle: Sooner Rather Than Later.” Journal of Pain and Symptom Management 2019;57(3):e12-14
  • Campbell, M. Response to “Hyoscine Butylbromide for The Management of Death Rattle: Sooner Rather Than Later.” Journal of Pain and Symptom Management 2019;57(1):e14-16
  • Clark K, Sheehan C, Currow D. Response to “Hyoscine Butylbromide for The Management of Death Rattle: Sooner Rather Than Later.” Journal of Pain and Symptom Management 2019;57(1):e16-e18
  • Bennett et al. Using anti-muscarinic drugs in the management of death rattle: evidence-based guidelines for palliative care. Palliative Medicine 2002;16:369-374
  • Mercadante S, Marinangeli F, Masedue F et al. Hyoscine Butylbromide for the Management of Death Rattle: Sooner Rather Than Later. Journal of Pain and Symptom Management 2018;6(6):902-907
  • Mercadante S. Death rattle: critical review and research agenda. Supportive Care in Cancer 2014;22:571-575
  • Mularski et al. An Official American Thoracic Society Workshop Report: Assessment and Palliative Management of Dyspnoea Crisis. Annals of the American Thoracic Society 2013:10:s98-s106
  • Smallwood et al. Management of refractory breathlessness with morphine in patients with chronic obstructive pulmonary disease. Internal Medicine Journal 2015:45;898-904
  • Simon et al. Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults. Cochrane Database of Systematic Reviews 2011. CD007354
  • Van Esch H, Geijteman E, van der Rijt C. Response to “Hyoscine Butylbromide for The Management of Death Rattle: Sooner Rather Than Later.” Journal of Pain and Symptom Management 2019;57(4):e1-2
  • Wee et al. Interventions for noisy breathing in patients near to death. Cochrane Database of Systematic Reviews 2008. CD005177

Craig Gannon

“Terminal agitation”
  • Beller EM, van Driel ML, McGregor l et al. Palliative pharmacological sedation for terminally ill adults. Cochrane Database of Systematic Reviews 2015, Issue 1. Art. No.: CD010206. Website resource.
  • Burry L, Mehta S, Perreault MM et al. Antipsychotics for treatment of delirium in hospitalised non‐ICU patients. Cochrane Database of Systematic Reviews 2018, Issue 6. Art. No.: CD005594.
  • Candy B, Jackson KC, Jones L et al Drug therapy for delirium in terminally ill adult patients. Cochrane Database of Systematic Reviews 2012, Issue 11. Art. No.: CD004770.
  • Cherny NI, Radbruch L, Board of EAPC. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliative Medicine 2009; 23: 581-93.
  • Hosker CM, Bennett MI. Delirium and agitation at the end of life. BMJ 2016; 353: i3085. Website resource.
  • Juth N, Lindblad A, Lynoe A et al. European Association for Palliative Care (EAPC) framework for palliative sedation: an ethical discussion. BMC Palliative Care 2010; 9: 20. Website resource.
  • Lonergan E, Luxenberg J, Areosa Sastre A. Benzodiazepines for delirium. Cochrane Database of Systematic Reviews 2009, Issue 4. Art. No.: CD006379.
  • National Institute for Health and Care Excellence. Delirium: prevention, diagnosis and management. London: NICE; 2010. Website resource.
  • Twycross R, Wilcock A, Howard P. Palliative Care Formulary, 6th edn. Nottingham:; 2017.

Richard Huxtable

Andrew Davies

Oral Care
  • Davies A. Oral care. In: Cherny NI, Fallon MT, Kaasa S, Portenoy RK, Currow DC, editors. Oxford Textbook of Palliative Medicine, 5th Edition. Oxford: Oxford University Press; 2015.