The experiences of relatives with the practice of palliative sedation: A systematic review

Journal of Pain and Symptom Management

Volumn 44, Issue 3, 2012, Pages 431-445

  Bruinsma, Sophie M ^a   Rietjens, Judith A C ^a   Seymour, Jane E ^b   Anquinet, Livia ^c   Van Der Heide, Agnes ^a  

^a ERASMUS MEDICAL CENTER   (Netherlands)

^b UNIVERSITY OF NOTTINGHAM   (United Kingdom)

^c GHENT UNIVERSITY   (Belgium)

Author keywords

experiences; Palliative sedation; relatives; systematic review

Indexed keywords

CAREGIVER; CLINICAL DECISION MAKING; DISTRESS SYNDROME; EMOTIONAL STRESS; EXPERIENCE; HUMAN; PALLIATIVE THERAPY; PHYSICIAN; RELATIVE; REVIEW; SEDATION; SYSTEMATIC REVIEW;

CONSCIOUS SEDATION; DATA INTERPRETATION, STATISTICAL; EMOTIONS; FAMILY; GUIDELINES AS TOPIC; HUMANS; PALLIATIVE CARE; PATIENT SATISFACTION; RESEARCH DESIGN;

EID: 84865681303     PISSN: 08853924     EISSN: 18736513     Source Type: Journal    
DOI: 10.1016/j.jpainsymman.2011.09.006     Document Type: Review

References (60)

1. C. Seale Changing patterns of death and dying Soc Sci Med 51 2000 917 930 (Pubitemid 30326791)
2. N. Cherny, and R.K. Portenoy Sedation in the management of refractory symptoms: guidelines for evaluation and treatment J Palliat Care 10 1994 31 38
3. T.E. Quill, and I.R. Byock Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids Ann Intern Med 132 2000 402 414
4. Royal Dutch Medical Association (RDMA). Guideline for palliative sedation [in Dutch]. 2005. Available from http://knmg.artsennet.nl/Nieuws/Nieuwsarchief/ Nieuwsbericht-1/KNMG-richtlijn-palliatieve-sedatie-herzien-1.htm. Accessed September 20, 2010.
5. G. Miccinesi, J.A.C. Rietjens, and L. Deliens Continuous deep sedation: physicians' experiences in six European countries J Pain Symptom Manage 31 2006 122 129 (Pubitemid 43243665)
6. A. van der Heide, B.D. Onwuteaka-Philipsen, and M.L. Rurup End-of-life practices in the Netherlands under the Euthanasia Act N Engl J Med 356 2007 1957 1965 (Pubitemid 46740305)
7. G. van der Wal, A. van der Heide, B.D. Onwuteaka-Philipsen, and P.J. van der Maas Medical decision-making at the end of life: practices and the euthanasia review procedure 2003 De Tijdstroom Utrecht, The Netherlands
8. J. Bilsen, R. Vander Stichele, B. Broeckaert, F. Mortier, and L. Deliens Changes in medical end-of-life practices during the legalization process of euthanasia in Belgium Soc Sci Med 65 2007 803 808 (Pubitemid 47077564)
9. J. Rietjens, J. van Delden, and B. Onwuteaka-Philipsen Continuous deep sedation for patients nearing death in the Netherlands: descriptive study BMJ 336 2008 810 813 (Pubitemid 351548222)
10. C. Seale End-of-life decisions in the UK involving medical practitioners Palliat Med 23 2009 198 204
11. C. Seale Continuous deep sedation in medical practice: a descriptive study J Pain Symptom Manage 39 2010 44 53
12. R.L. Fainsinger, A. Waller, and M. Bercovici A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients Palliat Med 14 2000 257 265 (Pubitemid 30609544)
13. H.C. Muller-Busch, I. Andres, and T. Jehser Sedation in palliative care - a critical analysis of 7 years experience BMC Palliat Care 2 2003 1 9 (Pubitemid 38783224)
14. P. Stone, C. Phillips, O. Spruyt, and C. Waight A comparison of the use of sedatives in a hospital support team and in a hospice Palliat Med 11 1997 140 144 (Pubitemid 27170619)
15. N. Sykes, and A. Thorns The use of opioids and sedatives at the end of life Lancet Oncol 4 2003 312 318 (Pubitemid 36592499)
16. T.Y. Chiu, W.Y. Hu, B.H. Lue, S.Y. Cheng, and C.Y. Chen Sedation for refractory symptoms of terminal cancer patients in Taiwan J Pain Symptom Manage 21 2001 467 472
17. N.I. Cherny, and L. Radbruch European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care Palliat Med 23 2009 581 593
18. J.A. Rietjens, J. Hauser, A. van der Heide, and L. Emanuel Having a difficult time leaving: experiences and attitudes of nurses with palliative sedation Palliat Med 21 2007 643 649 (Pubitemid 350130915)
19. T. Morita, S. Bito, Y. Kurihara, and Y. Uchitomi Development of a clinical guideline for palliative sedation therapy using the Delphi Method J Palliat Med 8 2005 716 729 (Pubitemid 41266247)
20. S. Hawker, S. Payne, C. Kerr, M. Hardey, and J. Powell Appraising the evidence: reviewing disparate data systematically Qual Health Res 12 2002 1284 1299
21. S. Payne, C. Kerr, S. Hawker, M. Hardey, and J. Powell The communication of information about older people between health and social care practitioners Age Ageing 31 2002 107 117 (Pubitemid 34413809)
22. A. Alonso-Babarro, M. Varela-Cerdeira, I. Torres-Vigil, R. Rodriguez-Barrientos, and E. Bruera At-home palliative sedation for end-of-life cancer patients Palliat Med 24 2010 486 492
23. K. Chambaere, J. Bilsen, and J. Cohen Continuous deep sedation until death in Belgium: a nationwide survey Arch Intern Med 170 2010 490 493
24. P. Claessens, J. Menten, P. Schotsmans, B. Broeckaert on behalf of the Palsed C Palliative sedation, not slow euthanasia: a prospective, longitudinal study of sedation in Flemish palliative care units J Pain Symptom Manage 41 2010 14 24
25. A. de Graeff, A.P. Jobse, E.H. Verhagen, and A.A. Moonen The role of consultation in palliative sedation in the central region of the Netherlands [in Dutch] Ned Tijdschr Geneeskd 152 2008 2346 2350
26. G. Eckerdal, A. Birr, and S. Lundstrom Palliative sedation uncommon in specialized palliative care in Sweden [in Swedish] Lakartidningen 106 2009 1086 1088
27. R. Forde, O.G. Aasland, E. Falkum, H. Breivik, and S. Kaasa Palliative sedation to dying patients in Norway [in Norwegian] Tidsskr Nor Laegeforen 121 2001 1085 1088 (Pubitemid 33709583)
28. J.G. Hasselaar, R.P. Reuzel, and M.E. van den Muijsenbergh Dealing with delicate issues in continuous deep sedation. Varying practices among Dutch medical specialists, general practitioners, and nursing home physicians Arch Intern Med 168 2008 537 543 (Pubitemid 351547217)
29. N. Marin, H. Kessel, and M. Rodriguez Terminal sedation: the last resort to avoid a bad death Rev Esp Geriatr Gerontol 38 2003 3 9 (Pubitemid 36547183)
30. T. Morita Palliative sedation to relieve psycho-existential suffering of terminally ill cancer patients J Pain Symptom Manage 28 2004 445 450 (Pubitemid 39422483)
31. T. Morita Differences in physician-reported practice in palliative sedation therapy Support Care Cancer 12 2004 584 592 (Pubitemid 39062550)
32. T. Morita, Y. Chinone, and M. Ikenaga Ethical validity of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan J Pain Symptom Manage 30 2005 308 319 (Pubitemid 41527117)
33. M.H. Parker, C.M. Cartwright, and G.M. Williams Impact of specialty on attitudes of Australian medical practitioners to end-of-life decisions Med J Aust 188 2008 450 456
34. S.C. Pomerantz, H. Bhatt, and N.L. Brodsky Physicians' practices related to the use of terminal sedation: moral and ethical concerns Palliat Support Care 2 2004 15 21
35. G. Porzio, F. Aielli, and L. Verna Efficacy and safety of deep, continuous palliative sedation at home: a retrospective, single-institution study Support Care Cancer 18 2009 77 81
36. J.A. Rietjens, J.J. van Delden, and A. van der Heide Terminal sedation and euthanasia: a comparison of clinical practices Arch Intern Med 166 2006 749 753
37. J.A. Rietjens, A. van der Heide, and A.M. Vrakking Physician reports of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands Ann Intern Med 141 2004 178 185
38. J.A. Rietjens, L. van Zuylen, and H. van Veluw Palliative sedation in a specialized unit for acute palliative care in a cancer hospital: comparing patients dying with and without palliative sedation J Pain Symptom Manage 36 2008 228 234
39. S. van Dooren, H.T. van Veluw, and L. van Zuylen Exploration of concerns of relatives during continuous palliative sedation of their family members with cancer J Pain Symptom Manage 38 2009 452 459
40. R.H. Van Deijck, P.J. Krijnsen, and J.G. Hasselaar The practice of continuous palliative sedation in elderly patients: a nationwide explorative study among Dutch nursing home physicians J Am Geriatr Soc 58 2010 1671 1678
41. S. Mercadante, G. Intravaia, and P. Villari Controlled sedation for refractory symptoms in dying patients J Pain Symptom Manage 37 2009 771 779
42. T. Morita, M. Ikenaga, and I. Adachi Family experience with palliative sedation therapy for terminally ill cancer patients J Pain Symptom Manage 28 2004 557 565 (Pubitemid 39626100)
43. T. Morita, M. Miyashita, R. Kimura, I. Adachi, and Y. Shima Emotional burden of nurses in palliative sedation therapy Palliat Med 18 2004 550 557 (Pubitemid 39242801)
44. S.J. Swart, T. Brinkkemper, and J.A. Rietjens Physicians' and nurses' experiences with continuous palliative sedation in the Netherlands Arch Intern Med 170 2010 1271 1274
45. D. Blondeau, S. Dumont, L. Roy, and I. Martineau Attitudes of Quebec doctors towards sedation at the end of life. An explanatory study Palliat Support Care 7 2009 331 337
46. D. Blondeau, L. Roy, S. Dumont, G. Godin, and I. Martineau Physicians' and pharmacists' attitudes toward the use of sedation at the end of life: influence of prognosis and type of suffering J Palliat Care 21 2005 238 245 (Pubitemid 43116684)
47. S. Chater, R. Viola, J. Paterson, and V. Jarvis Sedation for intractable distress in the dying - a survey of experts Palliat Med 12 1998 255 269 (Pubitemid 28344639)
48. S. Venke Gran, and J. Miller Norwegian nurses' thoughts and feelings regarding the ethics of palliative sedation Int J Palliat Nurs 14 2008 532 538
49. T. Morita, J. Tsunoda, S. Inoue, and S. Chihara The decison-making process in sedation for symptom control in Japan Palliat Med 13 1999 262 264 (Pubitemid 29281508)
50. S. Brajtman The impact on the family of terminal restlessness and its management Palliat Med 17 2002 454 460
51. T. Morita, M. Ikenaga, and I. Adachi Concerns of family members of patients receiving palliative sedation therapy Support Care Cancer 12 2004 885 889 (Pubitemid 40104786)
52. R. Forde, U. Kongsgaard, and O.G. Aasland Palliative sedation to the dying [in Norwegian] Tidsskr Nor Laegeforen 126 2006 471 474
53. L. Van den Block, R. Deschepper, and J. Bilsen Euthanasia and other end of life decisions and care provided in final three months of life: nationwide retrospective study in Belgium BMJ 339 2009 1 8
54. M. Maessen, J.H. Veldink, and B.D. Onwuteaka-Philipsen Trends and determinants of end-of-life practices in ALS in the Netherlands Neurology 73 2009 954 961
55. M. Miyashita, T. Morita, and K. Sato Factors contributing to evaluation of a good death from the bereaved family member's perspective Psychooncology 17 2008 612 620
56. J.A. Rietjens, H.M. Buiting, and H.R. Pasman Deciding about continuous deep sedation: physicians' perspectives: a focus group study Palliat Med 23 2009 410 417
57. J.E. Seymour, R. Janssens, and B. Broeckaert Relieving suffering at the end of life: practitioners' perspectives on palliative sedation from three European countries Soc Sci Med 64 2007 1679 1691 (Pubitemid 46436240)
58. World Health Organization. Definition of palliative care. 2008. Available from http://www.who.int/cancer/palliative/definition/en. Accessed February 22, 2011.
59. J.M. Teno, B.R. Clarridge, and V. Casey Family perspectives on end-of-life care at the last place of care JAMA 291 2004 88 93 (Pubitemid 38040539)
60. B. Andershed Relatives in end of life care - part 1: a systematic review of the literature the five last years, January 1999-February 2004 J Clin Nurs 15 2006 1158 1169 (Pubitemid 44213903)