Information preferences of the general population when faced with life-limiting illness

European Journal of Public Health

Volumn 25, Issue 3, 2015, Pages 532-538

  De Vleminck, Aline ^a,b   Pardon, Koen ^b   Roelands, Marc ^b   Houttekier, Dirk ^b   Van Den Block, Lieve ^b   Vander Stichele, Robert ^b,c   Deliens, Luc ^b,d  

^a GHENT UNIVERSITY   (Belgium)

^b VRIJE UNIVERSITEIT BRUSSEL   (Belgium)

^c GHENT UNIVERSITY   (Belgium)

^d GHENT UNIVERSITY HOSPITAL   (Belgium)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; AGE; AGED; BELGIUM; CROSS-SECTIONAL STUDY; DECISION MAKING; FEMALE; HUMAN; MALE; MEDICAL INFORMATION; MIDDLE AGED; PALLIATIVE THERAPY; PATIENT PREFERENCE; PROCEDURES; QUESTIONNAIRE; SEX DIFFERENCE; STATISTICS AND NUMERICAL DATA; TERMINAL CARE; YOUNG ADULT;

ADOLESCENT; ADULT; AGE FACTORS; AGED; BELGIUM; CROSS-SECTIONAL STUDIES; DECISION MAKING; FEMALE; HEALTH COMMUNICATION; HUMANS; MALE; MIDDLE AGED; PALLIATIVE CARE; PATIENT PREFERENCE; SEX FACTORS; SURVEYS AND QUESTIONNAIRES; TERMINAL CARE; YOUNG ADULT;

EID: 84939491186     PISSN: 11011262     EISSN: 1464360X     Source Type: Journal    
DOI: 10.1093/eurpub/cku158     Document Type: Article

References (28)

1. Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients' perspectives. JAMA 1999;281:163-8.
2. Rietjens JA, van der Heide A, Onwuteaka-Philipsen BD, et al. Preferences of the Dutch general public for a good death and associations with attitudes towards endof-life decision-making. Palliat Med 2006;20:685-92.
3. Koch KA. Patient self-determination act. J Fla Med Assoc 1992;79:240-3.
4. Daveson BA, Bausewein C, Murtagh FE, et al. To be involved or not to be involved: A survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe. Palliat Med 2013;27:418-27.
5. Harding R, Simms V, Calanzani N, et al. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology 2013 Mar 18. [Epub ahead of print].
6. Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med 2005;20: 531-5.
7. Fujimori M, Uchitomi Y. Preferences of cancer patients regarding communication of bad news: A systematic literature review. Jpn J Clin Oncol 2009;39:201-16.
8. Pardon K, Deschepper R, Stichele RV, et al. Preferences of advanced lung cancer patients for patient-centred information and decision-making: A prospective multicentre study in 13 hospitals in Belgium. Patient Educ Couns 2009;77:421-9.
9. Deschepper R, Bernheim JL, Vander SR, et al. Truth-telling at the end of life: A pilot study on the perspective of patients and professional caregivers. Patient Educ Couns 2008;71:52-6.
10. Meeussen K, Van den Block L, Echteld M, et al. Advance care planning in Belgium and The Netherlands: A nationwide retrospective study via sentinel networks of general practitioners. J Pain Symptom Manage 2011;42:565-77.
11. Belgian Scientific Institute of Public Health (ISP WIV). Health Interview Survey 2008. Study Protocol 2009. 41p, https://his. wiv-isp. be/nl/SitePages/Protocol. Aspx.
12. Law concerning palliative care. Belgian official collection of the Laws-October 26, 2002 (in Dutch), Law concerning palliative care. Belgian official collection of the Laws-October 26, 2002 (in Dutch), (2014).
13. Law concerning euthanasia. Belgian official collection of the Laws-June 22, 2002 (in Dutch), Law concerning euthanasia. Belgian official collection of the Laws-June 22, 2002 (in Dutch), (2014).
14. Law concerning patient rights. Belgian official collection of the Laws-September 26, 2002 (in Dutch), Law concerning patient rights. Belgian official collection of the Laws-September 26, 2002 (in Dutch), (2014).
15. Evans N, Pasman HR, Vega AT, et al. End-of-life decisions: A cross-national study of treatment preference discussions and surrogate decision-maker appointments. PLoS One 2013;8:e57965.
16. Cohen J, Van LP, Carpentier N, Deliens L. Public acceptance of euthanasia in Europe: A survey study in 47 countries. Int J Public Health 2014;59:143-56.
17. Coulter A, Jenkinson C. European patients' views on the responsiveness of health systems and healthcare providers. Eur J Public Health 2005;15:355-60.
18. Mitchell GK. How well do general practitioners deliver palliative care? A systematic review. Palliat Med 2002;16:457-64.
19. Murray SA, Kok JY. Internationally, it is time to bridge the gap between primary and secondary healthcare services for the dying. Ann Acad Med Singapore 2008;37: 142-4.
20. Michiels E, Deschepper R, Van Der Kelen G, et al. The role of general practitioners in continuity of care at the end of life: A qualitative study of terminally ill patients and their next of kin. Palliat Med 2007;21:409-15.
21. Walczak A, Butow PN, Davidson PM, et al. Patient perspectives regarding communication about prognosis and end-of-life issues: how can it be optimised? Patient Educ Couns 2013;90:307-14.
22. Van den Block L, Deschepper R, Bilsen J, et al. Euthanasia and other end-of-life decisions: A mortality follow-back study in Belgium. BMC Public Health 2009;9:79.
23. Bausewein C, Calanzani N, Daveson BA, et al. 'Burden to others' as a public concern in advanced cancer: A comparative survey in seven European countries. BMC Cancer 2013;13:105.
24. Downing J, Gomes B, Gikaara N, et al. Public preferences and priorities for end-of-life care in Kenya: A population-based street survey. BMC Palliat Care 2014; 13:4.
25. Royal College of Physicians. Concise guidance to good practice: A series of evidencebased guidelines for clinical management. Number 12: Advance Care Planning National Guidelines. London, RCP, 2009: 1-17.
26. NHS End of Life Care Program. Advance Care Planning: A Guide for Health and Social Care Staff 2008. http://www. ncpc. org. uk/sites/default/files/AdvanceCare Planning. pdf.
27. Cherlin E, Fried T, Prigerson HG, et al. Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said? J Palliat Med 2005;8:1176-85.
28. Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 2001;84:48-51.