The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: A qualitative study

Journal of Intellectual Disability Research

Volumn 57, Issue 4, 2013, Pages 380-389

  Wagemans, A ^a,b   van Schrojenstein Lantman de Valk, H ^c   Proot, I ^b   Metsemakers, J ^b   Tuffrey Wijne, I ^b,d   Curfs, L ^b  

^a Koraalgroep Maasveld   (Netherlands)

^b MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^c RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

^d ST GEORGE'S UNIVERSITY OF LONDON   (United Kingdom)

Author keywords

Death; End of life decisions; Ethical issues; Learning disabilities; Palliative care

Indexed keywords

ADULT; AGED; ARTICLE; CLINICAL ARTICLE; FEMALE; HEALTH CARE PERSONNEL; HUMAN; INTELLECTUAL IMPAIRMENT; JOB STRESS; KNOWLEDGE; MALE; MEDICAL ASSESSMENT; MEDICAL CARE; MEDICAL DECISION MAKING; NETHERLANDS; PHYSICIAN; QUALITATIVE RESEARCH; QUALITY OF LIFE; SEMI STRUCTURED INTERVIEW; TERMINAL CARE;

ADULT; AGED; CAREGIVERS; DEATH; DECISION MAKING; FEMALE; HUMANS; INTELLECTUAL DISABILITY; INTERVIEW, PSYCHOLOGICAL; MALE; MIDDLE AGED; NETHERLANDS; PHYSICIANS; QUALITATIVE RESEARCH; QUALITY OF LIFE; TERMINAL CARE;

EID: 84875522652     PISSN: 09642633     EISSN: 13652788     Source Type: Journal    
DOI: 10.1111/j.1365-2788.2012.01550.x     Document Type: Article

References (25)

1. AAIDD (2005) Caring at the End of Life. Available at: http://www.aamr.org/content_170.cfm?navID=56 (retrieved 2 August 2011).
2. AAIDD (2009) People Planning Ahead: Communicating Healthcare and End-of-Life Wishes. American Association on Intellectual and Developmental Disabilities, Washington, DC.
3. AAIDD (2010) End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities. American Association on Intellectual and Developmental Disabilities, Washington, DC.
4. Charles C., Gafni A. & Whelan T. (1997) Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Social Science & Medicine 44, 681-92.
5. Department for Constitutional Affairs (2007) Mental Capacity Act 2005: Code of Practice. The Stationery Office, London.
6. Dreyer A., Forde R. & Nortvedt P. (2010) Life-prolonging treatment in nursing homes: how do physicians and nurses describe and justify their own practice? Journal of Medical Ethics 36, 396-400.
7. Edwards A. & Elwyn G. (2006) Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision. Health Expectations 9, 307-20.
8. Hermsen M. & Ten Have H. (2005) Decision-making in palliative care practice and the need for moral deliberation: a qualitative study. Patient Education and Counseling 56, 268-75.
9. Joyce T. (2010) Best Interests, Guidance on Determining the Best Interests of Adults Who Lack the Capacity to Make a Decision (or Decisions) for Themselves (England and Wales). The British Psychological Society, Leicester.
10. Onwuteaka-Philipsen B. D., Van Der Heide A., Koper D., Keij-Deerenberg I., Rietjens J. A., Rurup M. L. etal. (2003) Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001. Lancet 362, 395-9.
11. Pousset G., Bilsen J., Cohen J., Chambaere K., Deliens L. & Mortier F. (2010) Medical end-of-life decisions in children in Flanders, Belgium: a population-based postmortem survey. Archives of Pediatrics & Adolescent Medicine 164, 547-53.
12. Seckler A. B., Meier D. E., Mulvihill M. & Paris B. E. (1991) Substituted judgment: how accurate are proxy predictions? Annals of Internal Medicine 115, 92-8.
13. Steinhauser K. E., Clipp E. C., Mcneilly M., Christakis N. A., Mcintyre L. M. & Tulsky J. A. (2000) In search of a good death: observations of patients, families, and providers. Annals of Internal Medicine 132, 825-32.
14. Strauss A. L. (ed.) (1990) Basics of Qualitative Research, Grounded Theory Procedures and Techniques. Sage Publications, London.
15. The A. M., Pasman R., Onwuteaka-Philipsen B., Ribbe M. & Van Der Wal G. (2002) Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study. British Medical Journal 325, 1326-30.
16. Tuffrey-Wijne I. (2010) Living with Learning Disabilities, Dying with Cancer: Thirteen Personal Stories. Jessica Kingsley Publishers, London.
17. Tuffrey-Wijne I., Bernal J., Butler G., Hollins S. & Curfs L. (2007) Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end-of-life care provision. Journal of Advanced Nursing 58, 80-9.
18. Tuffrey-Wijne I., Bernal J., Hubert J., Butler G. & Hollins S. (2009) People with learning disabilities who have cancer: an ethnographic study. British Journal of General Practice 59, 503-9.
19. Van Der Heide A., Deliens L., Faisst K., Nilstun T., Norup M., Paci E. etal. (2003) End-of-life decision-making in six European countries: descriptive study. Lancet 362, 345-50.
20. Van Thiel G. J., Van Delden J. J., De Haan K. & Huibers A. K. (1997) Retrospective study of doctors' 'end of life decisions' in caring for mentally handicapped people in institutions in The Netherlands. British Medical Journal 315, 88-91.
21. Verdugo M. A., Schalock R. L., Keith K. D. & Stancliffe R. J. (2005) Quality of life and its measurement: important principles and guidelines. Journal of Intellectual Disability Research 49, 707-17.
22. Vrakking A. M., Van Der Heide A., Arts W. F., Pieters R., Van Der Voort E., Rietjens J. A. etal. (2005) Medical end-of-life decisions for children in the Netherlands. Archives of Pediatrics & Adolescent Medicine 159, 802-9.
23. Wagemans A., Van Schrojenstein Lantman-De-Valk H., Tuffrey-Wijne I., Widdershoven G. & Curfs L. (2010) End-of-life decisions: an important theme in the care for people with intellectual disabilities. Journal of Intellectual Disability Research 54, 516-24.
24. Welie S. P., Dute J., Nys H. & Van Wijmen F. C. (2005) Patient incompetence and substitute decision-making: an analysis of the role of the health care professional in Dutch law. Journal of Public Health Policy 73, 21-40.
25. WGBO (1994) Act of 17 November 1994 amending the civil code and other legislation in connection with the incorporation of provisions concerning the contract to provide medical treatment (Medical Treatment Contract Act). Staatsblad.