- What’s new in end of life care - Kath Webber
- What is a “Good Death”? - Andrew Davies
- Prognostication - Paddy Stone
- Advanced care plans. Do they make a difference? - Paul Paes
- Overview of symptoms at the end of life - Jo Thompson
- “Death Rattle” - Charlotte Leach
- “Terminal Agitation: An Overview” - Craig Gannon
- Hydration and Nutrition: Clinical and ethical issues - Andrew Thorns
- Law and Ethics at the End of Life - Richard Huxtable
- Oral Problems - Andrew Davies (change to original programme, owing to speaker illness)
- Bereavement: Complicated Grief Should we screen? - Marilyn Relf
- Evidence based EOLC: does it really matter? - Simon Noble
Reading list and references
What’s new in End of Life Care?
- GMC treatment and care towards the end of life https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life
- NICE End of Life Care for adults https://www.nice.org.uk/guidance/qs13
- NICE Care of dying adults in the last days of life https://www.nice.org.uk/guidance/qs144/resources/care-of-dying-adults-in-the-last-days-of-life-pdf-75545479508677
- End of life ambitions http://endoflifecareambitions.org.uk/wp-content/uploads/2015/09/Ambitions-for-Palliative-and-End-of-Life-Care.pdf
- Office of National Statistics deaths https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths
- One chance to get it right. Leadership Alliance https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/One_chance_to_get_it_right.pdf
- Department of Health. Choice in end of life care https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/536326/choice-response.pdf
- Office National Statistics. VOICES survey https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/bulletins/nationalsurveyofbereavedpeoplevoices/england2015
- NHS Benchmarking. NACEL https://www.nhsbenchmarking.nhs.uk/nacel
- A Code of Practice for the Diagnosis and Confirmation of Death (AOMRC): http://www.aomrc.org.uk/wp-content/uploads/2016/04/Code_Practice_Confirmation_Diagnosis_Death_1008-4.pdf
- Hospice UK publications: https://www.hospiceuk.org/what-we-offer/publications
- Guidance for completing MCCD and cremation forms: https://www.gro.gov.uk/Images/medcert_July_2010.pdf https://www.gov.uk/government/publications/medical-practitioners-guidance-on-completing-cremation-forms
- Medical examiner reforms: https://www.gov.uk/government/publications/changes-to-the-death-certification-process/an-overview-of-the-death-certification-reforms
- Guide to Coroner Services: https://www.coronersociety.org.uk/_img/pics/pdf_1503323588.pdf
- National Guidance on Learning from Deaths: https://www.england.nhs.uk/wp-content/uploads/2017/03/nqb-national-guidance-learning-from-deaths.pdf
- Using the structured judgement review method: a guide for reviewers: https://www.rcplondon.ac.uk/sites/default/files/media/Documents/NMCRR%20guide%20England_0.pdf
- Palliative and end of life care profiles https://www.gov.uk/government/statistics/palliative-and-end-of-life-care-profiles-october-2019-data-update
- Avoidability of hospital deaths and association with hospital-wide mortality ratios https://www.bmj.com/content/351/bmj.h3239
What is a “good death”?
- Age Concern. Debate of the Age Health and Care Study Group. The future of health and care of older people: the best is yet to come. London: Age Concern; 1999.
- Davies A, Todd J, Bailey F, Gregory A, Waghorn M. 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 2016 [Epub ahead of publication]. https://spcare.bmj.com/content/early/2016/05/17/bmjspcare-2015-001085
- Miyashita M, Morita T, Sato K et al. Good death inventory: a measure for evaluating good death from the bereaved family member’s perspective. J Pain Symptom Manage 2008; 35: 486-98.
- National Audit of Care at the End of Life (NACEL): United Kingdom; 2019. Available from: https://www.nhsbenchmarking.nhs.uk/nacel
- National Survey of Bereaved People (VOICES): England, 2015. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/bulletins/nationalsurveyofbereavedpeoplevoices/england2015
- Payne SA, Langley-Evans A, Hillier R. Perceptions of a “good” death: a comparative study of the views of hospice staff and patients. Palliat Med 1996; 10: 307-12.
- Smith R. A good death. BMJ 2000; 320: 129-30. https://www.bmj.com/content/320/7228/129
- Steinhauser KE, Christakis N, Clipp EA et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000; 284: 2476-82.
- Waghorn M, Young H, Davies A. Opinions of patients with cancer on the relative importance of place of death in the context of a “good death”. BMJ Supportive & Palliative Care https://spcare.bmj.com/content/1/3/310?int_source=trendmd&int_medium=trendmd&int_campaign=trendmd
- Wilson DM, Hewitt JA. A scoping literature review to assess the state of existing evidence on the “bad” death. Palliative and Supportive Care 2018; 16: 90-106.
- Whit et al. Systematic review of predictions of survival in palliative care: how accurate are clinicians and who are the experts? https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0161407
- Provano et al. A new palliative prognostic score: a first step for the staging of terminally ill cancer patients. Italian Multicentre and Study Group on Palliative Care. J Pain Symptom Manage 1999 https://www.ncbi.nlm.nih.gov/pubmed/10203875
- Gwilliam et al. Development of prognosis in Palliative care Study (PiPS) predictor models to improve prognostication in advanced cancer: prospective cohort study. BMJ 2011. https://www.bmj.com/content/343/bmj.d4920
- Kalpakidou AK et al. The prognosis in palliative care study II (PiPS2). BMC Palliative Care 2018. https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-018-0352-y
- Hui D et al. Clinical signs of impending death in cancer patients. Oncologist 2014. https://www.ncbi.nlm.nih.gov/pubmed/24760709
- Benedetti D et al. International palliative care experts’ view on phenomena indicating the last hours and days of life. Support Care Cancer 2013. https://www.ncbi.nlm.nih.gov/pubmed/23242388
- White N et al. How do palliative care doctors recognise imminently dying patients? A judgement analysis. BMJ Open 2019 https://bmjopen.bmj.com/content/8/11/e024996
- Oostendorp L et al. Protocol for the ORaCIES study: an online randomised controlled trial to improve clinical estimates of survival using a training resource for medical students. BMJ Open https://bmjopen.bmj.com/content/9/3/e025265
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. https://doi.org/10.1093/geront/42.suppl_3.114
- 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:10.1186⁄1472-684X-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. https://doi.org/10.1177/0269216308094336
- 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.https://doi.org/10.1371/journal.pone.0209315
- 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
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: 10.1002⁄14651858.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 https://www.nice.org.uk/guidance/ng31 (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: 10.1002⁄14651858.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. Palliativedrugs.com.
- 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.
- 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
- 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: palliativedrugs.com; 2017.
Legal challenges at the end of life
- Royal College of Nursing Guidance http://rcnendoflife.org.uk/the-patient-journey/ethics/
- Thorns A. Ethical and legal issues in end-of-life. Clinical Medicine. http://www.clinmed.rcpjournal.org/content/10/3/282
- Beauchamp TL. Methods and principles in biomedical ethics. Journal of Medical Ethics https://jme.bmj.com/content/29/5/269
- Rodriguez-Prat A et al. Patient perspectives of dignity, autonomy, and control at the end of life. Systematic review and meta-ethnography. PLoS One. 2016. https://www.ncbi.nlm.nih.gov/pubmed/27010323
- Bester J, Kodish E. Cardiopulmonary resuscitation, informed cpnsent, and rescue: what provides moral justification for the provision of CPR? https://www.ncbi.nlm.nih.gov/pubmed/30896446
- 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.