Students should be able to demonstrate in practice:

• an understanding of ethical and legal aspects of treatment for patients who lack capacity for a particular decision or who have capacity but are otherwise vulnerable
• knowledge of the legal criteria for establishing that a person lacks capacity
• an understanding of the ethical challenges and legal requirements of determining and acting in the best interests of patients who lack capacity
• an understanding of ethical and legal tensions between the interests of the patient, family and the community.

General

BioCentre Academic Paper search

Books

Bayley, J, 1998: Iris: a memoir of Iris Murdoch. Duckworth. An affectionate account of Iris Murdoch’s deterioration with dementia, written by her husband. 

Jones, K, 2010: Hannah’s Choice, Harper True (see also author video on Amazon). A personal account by Kirsty and Hannah Jones, about Hannah’s illness with leukemia and heart failure and her decisions about heart transplant. Relevant for discussions about Gillick competence.

McHaffie, H 2010: Remember Remember Luath Press, Edinburgh. A Medical Ethical Mystery Novel about a daughter caring for her mother who is a dementia patient. See Book Review 

Gillies, A 2010: Keeper.  A Book about Memory, Identity, Isolation, Wordsworth and Cake. Short Press Ltd. 

Three years ago, Andrea Gillies, a writer and mother of three, took on the care of her mother-in-law Nancy, who was in the middle stages of Alzheimer's disease. This newly extended family moved to a big Victorian house on a headland in the far, far north of Scotland, where the author failed to write a novel and Nancy, her disease accelerated by change, began to move out of the rational world and into dementia's alternative reality.  This book is a journal of life in this wild location, in which Gillies tracks Nancy's unravelling grasp on everything that we think of as ordinary, and interweaves her own brilliantly cogent investigations into the way Alzheimer's works.  (Description from Amazon). 

See book review from the Royal College of Psychiatrists. 

 

Films and documentaries

The Death of Mr Lazarescu (Romania, 2005). Mr Lazarescu slowly becomes less coherent as he is taken by ambulance from one hospital to another.

Marvin’s Room (1996). A leukemia patient attempts to end a 20-year feud with her sister to get her bone marrow. (IMDB.com)

The Doctor (1991).  Jack McKee is a doctor with it all: he's successful, he's rich, and he has no problems.... until he is diagnosed with throat cancer. Now that he has seen medicine, hospitals, and doctors from a patient's perspective, he realises that there is more to being a doctor than surgery and prescriptions.  (M Chapman, IMDB.com). 

Away from Her (2006). A man coping with the institutionalization of his wife because of Alzheimer's disease faces an epiphany when she transfers her affections to another man, Aubrey, a wheel chair-bound mute who also is a patient at the nursing home. (IMDB.com)

Social Care TV Films about mental capacity, Social Care Institute for Excellence

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

Patients who lack capacity for a particular decision or who have capacity but are otherwise vulnerable

Interactive Case studies, waiting room 2 (Shannon), GMC

Treatment decisions for people who can’t give informed consent. Who decides and how?, BBC Radio 4, Inside the Ethics Committee (2007)

Dementia: ethical issues, Nuffield Council on Bioethics (2009)

Knowledge, skills and behaviours that define ‘‘a good doctor’’

Consent Guidance: patients and doctors making decisions together, GMC (2008)

Mental Capacity Act 2005 (Code of Practice). Legal criteria for establishing that a person lacks capacity.

Assessing Capacity, UK Clinical Ethics Network

An explanation of the relationship between the Mental Capacity Act (MCA) and the Mental Health Act (MHA), UK Clinical Ethics Network

Re B (Adult: Refusal of Medical Treatment), EWHC 429 [2002]

Best interests of patients who lack capacity

Forvargue, S., and Miola, J., The best interests principle and providing treatment for adults without capacity in England and Wales, 2010 Clinical Ethics 5: 180 -183

Slowther, A., Determining best interests in patients who lack capacity to decide for themselves, Clinical Ethics 2007; 2: 19- 21

Donnelly, M., Best Interests, Patient Participation and the Mental Capacity Act 2005, Med Law Rev 2009 17: 1-29

Ethical and legal tensions between the interests of the patient, family and the community

Fistein, E. (2011, in press) The Mental Capacity Act and conceptions of the good. In Autonomy and Mental Health ed. Radoilska, L. Oxford: Oxford University Press.

Confidentiality case study: sharing information with relatives/carers, GMC. Assessing a learning disabled patient's capacity to manage his own care and make important decisions.

e-Learning

E-learning resources for the Mental Capacity Act, Social Care Institute of Excellence

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

http://www.elu.sgul.ac.uk/iethics/?page_id=289  (Alfred Stokes VP)

Other resources

Medical Protection Society factsheets

Mental Capacity Act: Advance decisions

Mental Capacity Act: Assessing capacity

Mental Capacity Act: Best interest tests

Mental Capacity Act: Court of protection and deputies

Mental Capacity Act: Independent mental capacity advocates

Mental Capacity Act: Lasting powers of attorney

Mental Capacity Act: General principles

Mental Capacity Act: Assessments under Deprivation of Liberty Safeguards

Mental Capacity Act: Introduction to Deprivation of Liberty Safeguards