The palliative care experiences of adults with learning disabilities/intellectual disability: The implications for ethical decision making

International Journal on Disability and Human Development

Volumn 8, Issue 1, 2009, Pages 25-32

  Flynn, Margaret ^a   Salomons, Hilary Brown ^b   Salomons, Sophie Burns ^b   Keywood, Kirsty ^c  

^a SHEFFIELD HALLAM UNIVERSITY   (United Kingdom)

^b CANTERBURY CHRIST CHURCH UNIVERSITY   (United Kingdom)

^c UNIVERSITY OF MANCHESTER   (United Kingdom)

Author keywords

choice; consent; ethical challenges; Learning disability; residential services

Indexed keywords

ARTICLE; DYING; ETHICAL DECISION MAKING; HEALTH CARE; HEALTH CARE PERSONNEL; HEALTH SERVICE; HUMAN; INFORMED CONSENT; INTELLECTUAL IMPAIRMENT; LEARNING DISORDER; MEDICOLEGAL ASPECT; PALLIATIVE THERAPY; SOCIAL CARE; TREATMENT REFUSAL;

EID: 67049119815     PISSN: 21911231     EISSN: 21910367     Source Type: Journal    
DOI: 10.1515/IJDHD.2009.8.1.25     Document Type: Article

References (23)

1. Keywood K, Fovargue S, Flynn M. Best practice? Health care decision-making by, with and for adults with learning disabilities. Manchester: Nat Dev Team, Inst Med Law Bioethics, 1999.
2. Flynn M, Keywood K, Fovargue S. Warning -health choices can kill. J Adult Protect 2003; 5(l):30-4.
3. Brown H, Bums S, Flynn M. Supporting people through terminal illness and death. In: The report of the Growing Older with Learning Disabilities Programme. London: Foundation People Learning Disabil, 2002.
4. Brown H, Burns S, Flynn M. Dying matters: A workbook on caring for people with learning disabilities who are terminally ill. London: Foundation People Learning Disabil, 2005
5. Iacono T, Murray V. Issues of informed consent in conducting medical research involving people with intellectual disability. J Applied Res Intellect Disabil 2003;16(1):41-51.
6. Keywood K, Flynn M. Healthcare decision making by adults with learning disabilities: Some levers to changing practice. Psychiatry 2003;2(9): 59-62.
7. Keywood K, Flynn M. Healthcare decision-making by adults with learning disabilities: ongoing agendas, future challenges. Psychiatry 2006;5(10)360-2.
8. Lord Chancellor's Department. Making decisions: helping people who have difficulty deciding for themselves. A guide for healthcare professionals. London: HMSO, 2003
9. Lord Chancellor's Department. Making decisions: helping people who have difficulty deciding for themselves. A guide for social care professionals. London: HMSO, 2003.
10. Lord Chancellor's Department. Making decisions: Helping people who have difficulty deciding for themselves. A guide for family and friends. London: HMSO, 2003.
11. Edge J. Demonstrating control of decisions by adults with learning disabilities who have high support needs. 2001. Available at: http://www. irf.org.uk
12. Fennell P. Informed consent and clinical research in psychiatry. In: Doyal L, Tobias JS, eds. Informed consent in medical research. London: BMJ Books, 2001.
13. Department of Health. Reference guide to consent for examination or treatment. London: DOH, 2001.
14. Department of Health. Our health, our care, our say: a new direction for community services. Norwich: TSO, 2006.
15. Lord Chancellor's Department. Who decides? Making decisions on behalf of mentally incapacitated adults. Consultation Paper Cm 3803. London, 1997
16. Department for Constitutional Affairs. Mental capacity bill: Draft code of practice. 2006. Available at: http://www.dca.gov.uk/menincap/ mcbdraftcode.pdf
17. Randall F, Downie RS. Palliative care ethics: A companion for all specialties, 2nd ed. Oxford: Oxford Univ Press, 1999.
18. General Medical Council. Seeking patient's consent: the ethical considerations. London: GMC, 1999.
19. Royal Mencap Society (MENCAP). Considerations of “quality of life” in cases of medical decision-making for people with severe learning disabilities. London: MENCAP, 2001.
20. Harris J, Allen D, Cornick M, Jefferson A, Mills R. Physical interventions: a policy framework. Kidderminster BILD Publications, National Autistic Society, 1996.
21. The AM, Hak T, Koëter G, van Der Wal G. Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ 2000,321(7273): 1376-81.
22. Kitt L, Flynn M, Rimmer M. Advocating for health: Personal health record. South Shields: Harlow Printing, 1998.
23. Donaghy V, Bernal J, Tuflrey-Wijne I, Hollins S. Getting on with cancer. London: Gaskell, 2002.