140
Views
1
CrossRef citations to date
0
Altmetric
Relationality

Addressing goals of care in the never-competent patient

, &

References

  • Bekkema, N., de Veer, A. J., Hertogh, C. M., & Francke, A. L. (2014). Respecting autonomy in the end-of-life care of people with intellectual disabilities: A qualitative multiple-case study. Journal of Intellectual Disability Research, 58, 368–380. doi: 10.1111/jir.12023
  • Bekkema, N., de Veer, A. J., Hertogh, C. M., & Francke, A. L. (2015). “From activating towards caring”: Shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians. BMC Palliative Care, 14, 33. doi: 10.1186/s12904-015-0030-2
  • Bekkema, N., de Veer, A. J., Wagemans, A. M., Hertogh, C. M., & Francke, A. L. (2014). Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: A national survey of the considerations and beliefs of GPs, ID physicians and care staff. Patient Education & Counseling, 96, 204–209. doi: 10.1016/j.pec.2014.05.014
  • Boxer, H., & Snyder, S. (2009). Five communication strategies to promote self-management of chronic illness. Family Practice Management, 16, 12–16. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/citmatch
  • Buchanan, A. E., & Brock, D. W. (1990). Deciding for others: The ethics of surrogate decision making. Cambridge, UK: Cambridge University Press.
  • Byrnes, A., Conte, A., Gonnot, J. P., Larsson, L., Schindlmayr, T., Shepherd, N., … Zarraluqui, A. (2007). From exclusion to equality: Realizing the rights of persons with disabilities. Geneva: United Nations.
  • Cantor, N. L. (2005). The bane of surrogate decision-making: Defining the best interests of never-competent persons. Journal of Legal Medicine, 26, 155–205. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/citmatch doi: 10.1080/01947640590949922
  • Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ, 340, c1345. doi: 10.1136/bmj.c1345
  • Kopelman, L. M. (2007). The best interests standard for incompetent or incapacitated persons of all ages. Journal of Law, Medicine & Ethics, 35, 187–196. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/citmatch doi: 10.1111/j.1748-720X.2007.00123.x
  • Mack, J. W., Weeks, J. C., Wright, A. A., Block, S. D., & Prigerson, H. G. (2010). End-of-life discussions, goal attainment, and distress at the end of life: Predictors and outcomes of receipt of care consistent with preferences. Journal of Clinical Oncology, 28, 1203–1208. doi: 10.1200/JCO.2009.25.4672
  • Roberts, L. W., & Kim, J. P. (2016). Are individuals living with mental illness and their preferred alternative decision-makers attuned and aligned in their attitudes regarding treatment decisions? Journal of Psychiatric Research, 78, 42–47. doi: 10.1016/j.jpsychires.2016.03.004
  • Stein, G. L., & Kerwin, J. (2010). Disability perspectives on health care planning and decision-making. Journal of Palliative Medicine, 13, 1059–1064. doi: 10.1089/jpm.2010.0159
  • Tuffrey-Wijne, I., Bernal, J., & Hollins, S. (2010). Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: Findings from an ethnographic study. European Journal of Oncology Nursing, 14, 224–230. doi: 10.1016/j.ejon.2010.01.021
  • 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, 503–509. doi: 10.3399/bjgp09X453413
  • 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, 516–524. doi: 10.1111/j.1365-2788.2010.01276.x
  • Wagemans, A. M., Van Schrojenstein Lantman-de Valk, H. M., Proot, I. M., Metsemakers, J., Tuffrey-Wijne, I., & Curfs, L. M. (2013). End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives. Palliative Medicine, 27, 765–771. doi: 10.1177/0269216312468932
  • Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., … Prigerson, H. G. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. Journal of the American Medical Association, 300, 1665–1673. doi: 10.1001/jama.300.14.1665
  • Zhang, B., Wright, A. A., Huskamp, H. A., Nilsson, M. E., Maciejewski, M. L., Earle, C. C., … Prigerson, H. G. (2009). Health care costs in the last week of life: Associations with end-of-life conversations. Archives of Internal Medicine, 169, 480–488. doi: 10.1001/archinternmed.2008.587

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.