Towards the end of life

Towards the end of life: principles

Students should be able to demonstrate in practice an understanding of ethical and legal issues at the end of life including:

  • dignity, patient choice, limits on respect for patient autonomy
  • “ageism”, “futility”, sanctity and quality of life
  • withholding and withdrawing treatment, eg, clinically assisted hydration and nutrition, “Do not attempt resuscitation” (DNAR) orders, and other advanced decisions about treatment
  • the need to respond sensitively to patients at the end of life and to their families/carers
  • respect for diverse cultural practices at the end of life
  • the requirements for death certification and completion of relevant certificates and legal documents
  • students should be able to demonstrate an understanding of the law and ethics as they apply to euthanasia and assisted suicide.


Towards the end of life: teaching and learning resources

General

BioCentre Academic Paper search

bauby


Books

J D Bauby, J-D 1997: The diving-bell and the butterfly. London: Fourth Estate. The account written by a journalist after a stroke leading to 'locked-in' syndrome. 
Cover image Reprinted by permission of HarperCollins Publishers Ltd © 2008 Bauby,

Lewis, P 2007: Assisted Dying and Legal Change, OUP. This book examines the impact of the choice of diverse legal routes towards legalization on the subsequent assisted dying regimes in operation. (Amazon)

McHaffie, H 2008: Right to Die, Luath Press. A novel about a writer with MND who seeks assistance with his suicide, told in the form of a diary from his diagnosis to death and accompanied by his widow's reaction. See book review (Word document).

McHaffie, H 2013: Over My Dead Body, Luath Press. A novel dealing with the issues around organ donation and transplantation. www.hazelmchaffie.com/book/over-my-dead-body

kubler ross cover for web

Kübler Ross, E 2009: On Death and Dying: what the dying have to teach doctors, nurses, clergy and their own families.  Abingdon, Routledge. (40th anniversary ed.) Denial, anger, bargaining, depression and acceptance. The five stages of grief, first formulated in this hugely influential work forty years ago, are now part of our common understanding of bereavement. The five stages were first identified by Elisabeth Kübler-Ross in her work with dying patients at the University of Chicago and were considered phases that all or most people went through, when faced with the prospect of their own death. This groundbreaking book is still relevant – giving a voice to dying people and exploring what impending death means to them, often in their own words. Ideal for all those with an interest in bereavement or the five stages of grief.

Cover image used with permission of the publisher: taylorandfrancisgroup.com

glover cdslCausing Deaths and Saving Lives by Jonathan Glover (Penguin Books, 1990). Glover, J 1977: Causing Death and Saving Lives, Penguin. The moral problems of abortion, infanticide, suicide, euthanasia, capital punshiment, war and other life-or-death choices. 

Cover image used with permission of the publisher: www.taylorandfrancisgroup.com

Keizer, B 1997: Dancing with Mister D: Notes on Life and Death, Black Swan. The story of one doctor’s life in a Dutch nursing home. His patients are terminally ill. The process of dying is described with great humanity, insight and understanding. The patients’ stories are interspersed with philosophical conversations between three doctors working there which dissect the mysteries of life and death.

dancing with mister d

Cover image from: 'Dancing With Mister D: Notes on Life and Death' by Bert Keizer, published by Black Swan. Used by permission of The Random House Group Limited.

 

 

 

Films and documentaries

Patient interview: Decisions involving values and difficult personal choices

In this clip, from healthtalkonline.org, parents describe their shock when a nurse asked them, in a roundabout way, to consider turning off their son's life support. They were 'grateful' to be contacted by his consultant later who told them that was not the only option. The clip illustrates very well the uncertainty that exists around these decisions as well as how individuals try to think about what constitutes a valuable life. Also good for communication with family members.

 Copyright © 2011 University of Oxford. Used under licence from DIPEx. All rights reserved.

The Diving Bell and the Butterfly (2007). The true story of Elle editor Jean-Dominique Bauby who suffers a stroke and has to live with 'locked in' syndrome. (IMDB.com)

The Sea Inside (2004). The real-life story of Spaniard Ramon Sampedro, who fought a 30 year campaign in favor of euthanasia and his own right to die. (IMDB.com)

A Short Stay in Switzerland (2009). Just after losing her husband to a similar condition, Dr Anne Turner is diagnosed with a fatal neurological condition. So she plans to end her life herself. Based on a true story. (IMDB.com)

Between Life and Death. It is a decision no parent ever wants to make. But as the Rudd family watched their 43-year-old son lying paralysed and comatose on a life support machine, they came to a terrible conclusion. Recalling a conversation where Richard told them he wouldn't want to be trapped in a useless body, his relatives agreed it was time to let him go. Yet even as the Rudd family mentally prepared to say goodbye, his doctor made a startling discovery. Despite his devastating spinal injuries, Richard Rudd was still able to blink his eyes in response to simple questions. And when asked if he wanted to stay alive, the father of two's answer was a categoric Yes.

In 3 parts:

The Barbarian Invasions (2003). Denys Arcand. During his final days, a dying man is reunited with old friends, former lovers, his ex-wife, and his estranged son. (IMDB.com)

Kill Me Please (2010). Olias Barco. Dr. Kruger runs a clinic that provides care and a few drops of poison to those who have decided to do away with this life.

Social Care TV film about end of life care, Social Care Institute for Excellence

For other relevant humanities references see NYU School of Medicine Humanities Database

 

Professional guidance

Treatment and care towards the end of life: good practice in decision making, GMC (2010)

Confirmation and certification of death, BMA (downloadable Word document)

End-of-life decisions: views of the BMA (2009)

Responding to patient requests relating to assisted suicide: guidance for doctors in England, Wales and Northern Ireland, BMA (2010) (downloadable Word document)

Withholding and withdrawing life-prolonging medical treatment: guidance for decision making, BMA (3rd ed) 2007

 

Medical Protection Society guidance

Factsheet: Inquests

Factsheet: Removal of medical equipment after death

Factsheet: Reporting deaths to the coroner

 

Landmark legal cases involving decisions at the end of life

Airedale NHS Trust v Bland [1992] UKHL 5 

R (on the application of Burke) v General Medical Council [2005] EWCA Civ 1003

See UK Clinical Ethics Network Case Commentaries:

Mulvaney, L R (on the Application of Burke) v General Medical Council, R (on the Application of Burke) v General Medical Council [2004] EWHC 1879 (Admin)

Burke vs. GMC Summary of CEC Responses to High Court Judgement

Outcome of GMC Appeal Against Burke Ruling

Foster, C Burke: A Tale of Unhappy Endings

Commentary on Wyatt v Portsmouth Hospitals NHS Trust [2005] EWCA Civ 1181

Baby MB [2006]

Pretty v. the United Kingdom [2002] (application no. 2346/02)

R (on the application of Purdy) v Director of Public Prosecutions [2009] UKHL 45

 

Websites

Commission on Assisted Dying

Dying Matters

Compassion in Dying

Inside the Ethics Committee: End of Life, BBC Radio 4 (2005). Treatment withdrawal - the case of a man in his late sixties with a chronic lung condition.

Policy for Prosecutors in respect of Cases of Encouraging or Assisting Suicide, Crown Prosecution Service (2010)

End of Life Assistance (Scotland) Bill, Scottish Parliament (2010)

Interactive videos

http://www.elu.sgul.ac.uk/iethics/?page_id=11 (Andy DuFrayne VP)

http://www.elu.sgul.ac.uk/iethics/?page_id=289 (Joseph Murray and Alfred Stokes VP's)

 

Articles

Stewart C, Peisah C, Draper B, A test for mental capacity to request assisted suicide J Med Ethics. 2011 Jan;37(1):34-9

Johnston, C, The Mental Capacity Act 2005 and advance decisions, Clinical Ethics 2007; 2: 80–841 (4)

Woo, J A, and Prager, K M, Substituted misjudgement, Clinical Ethics 4(4): 208-210

Fuld J, and Fritz Z, Ethical issues surrounding do not attempt resuscitation orders: decisions, discussions and deleterious effects, J Med Ethics 2010;36: 593-597

Medical Law Review Special issue: Legal challenges and new horizons for medicalised death and dying, Volume 18 Issue 4 Winter 2010