Patients: their values, narratives, rights and responsibilities: principles
Students should be able to demonstrate a critically reflective understanding of:
- the differences between moral, legal and human rights and how these impact on professional practice
- the importance of the patient’s dignity, narrative and perspective in the clinical encounter
- the rights and responsibilities of patients and possible justifications for limiting their rights
- ethical and legal aspects of the relationship between the interests of patients and their relatives/carers and, where relevant, how best to involve and respect the latter’s views.
Patients: their values, narratives, rights and responsibilities: teaching and learning resources
Padfield, D, 2003: Perceptions of Pain, Dewi Lewis publishing.
Perceptions of Pain is a moving and startling collection of images that explores the interface between doctor and patient, photographer and subject, maker and viewer, science and art. Additional texts by Professor Brian Hurwitz, Doctor Charles Pither and Deborah Padfield examine cultural and medical aspects of pain from multiple perspectives, questioning our assumptions about the pain experience and its place within the medical setting.
Carel, H, 2008: Illness (Art of Living) Acumen. What is illness? Is it a physiological dysfunction, a social label, or a way of experiencing the world? How do the physical, social and emotional worlds of a person change when they become ill? And can there be well-being within illness? In this remarkable and thought-provoking book, Havi Carel explores these questions by weaving together the personal story of her own serious illness with insights and reflections drawn from her work as a philosopher.
Purdy, D, 2010: It’s Not Because I Want to Die, Harper True. Debbie Purdy’s story of her life with MS and her involvement in the clarification of the law on assisted suicide.
Blood, D, 2004: Flesh and Blood: The Human Story Behind the Headlines Mainstream. Diane Blood’s story of her campaign to have her husband Stephen's baby artificially inseminated began after he contracted bacterial meningitis and died in 1995. Since giving birth to the first of their two sons in 1998, she has fought for the law to be changed to allow deceased fathers' names to appear on the birth certificates of posthumously conceived children - and finally succeeded in December 2003.
Skloot, R, 2010: The Immortal Life of Henrietta Lacks Pan (Video on Amazon). Her name was Henrietta Lacks, but scientists know her as HeLa. Born a poor black tobacco farmer, her cancer cells -- taken without her knowledge -- became a multimillion-dollar industry and one of the most important tools in medicine. Yet Henrietta's family did not learn of her 'immortality' until more than twenty years after her death, with devastating consequences . . . Balancing the beauty and drama of scientific discovery with dark questions about who owns the stuff our bodies are made of, The Immortal Life of Henrietta Lacks is an extraordinary journey in search of the soul and story of a real woman, whose cells live on today in all four corners of the world.
Films and documentaries
Dirty Pretty Things (2002). Okwe, a kind-hearted Nigerian doctor, and Senay, a Turkish chambermaid, work at the same West London hotel. The hotel is run by Senor Sneaky and is the sort of place where dirty business like drug dealing and prostitution takes place. However, when Okwe finds a human heart in one of the toilets, he uncovers something far more sinister than just a common crime. (IMDB.com)
Marvin’s Room (1996). A leukemia patient attempts to end a 20-year feud with her sister to get her bone marrow. (IMDB.com)
Widdershoven, G, Berghmans, R, Advance directives in psychiatric care: a narrative approach, J Med Ethics 2001;27:92-97
Nicholas, B, Gillet, G., Doctors' stories, patients' stories: a narrative approach to teaching medical ethics, J Med Ethics 1997;23:295-299
Hughes, J C, Views of the person with dementia, J Med Ethics 2001;27:86-91
Atkins, K, Autonomy and the Subjective Character of Experience, (2000), Journal of Applied Philosophy, 17, 71-79.