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Family members’ experiences of “wait and see” as a communication strategy in end-of-life decisionsOpen access

Ranveig Lind| Geir F. Lorem| Per Nortvedt| Olav Hevrøy
Original
Volume 37, Issue 7 / July , 2011

Pages 1143 - 1150

Abstract

Purpose

The aim of this study is to examine family members’ experiences of end-of-life decision-making processes in Norwegian intensive care units (ICUs) to ascertain the degree to which they felt included in the decision-making process and whether they received necessary information. Were they asked about the patient’s preferences, and how did they view their role as family members in the decision-making process?

Methods

A constructivist interpretive approach to the grounded theory method of qualitative research was employed with interviews of 27 bereaved family members of former ICU patients 3–12 months after the patient’s death.

Results

The core finding is that relatives want a more active role in end-of-life decision-making in order to communicate the patient’s wishes. However, many consider their role to be unclear, and few study participants experienced shared decision-making. The clinician’s expression “wait and see” hides and delays the communication of honest and clear information. When physicians finally address their decision, there is no time for family participation. Our results also indicate that nurses should be more involved in family–physician communication.

Conclusions

Families are uncertain whether or how they can participate in the decision-making process. They need unambiguous communication and honest information to be able to take part in the decision-making process. We suggest that clinicians in Norwegian ICUs need more training in the knowledge and skills of effective communication with families of dying patients.

Keywords

References

  1. Cohen S, Sprung C, Sjokvist P, Lippert A, Ricou B, Baras M, Hovilehto S, Maia P, Phelan D, Reinhart K, Werdan K, Bulow HH, Woodcock T (2005) Communication of end-of-life decisions in European intensive care units. Intensive Care Med 31:1215–1221
  2. Norwegian legislation: the patients’ rights act (1999) Available at http://www.ub.uio.no/ujur/ulovdata/lov-19990702-063-eng.pdf. Accessed Nov 29, 2010
  3. Ferrand E, Robert R, Ingrand P, Lemaire F, French LATAREA Group (2001) Withholding and withdrawal of life support in intensive-care units in France: a prospective survey. French LATAREA Group. Lancet 357:9–14
    • View reference on PubMed
    • View reference on publisher's website
  4. Moselli NM, Debernardi F, Piovano F (2006) Forgoing life sustaining treatments: differences and similarities between North America and Europe. [Review]. Acta Anaesthesiol Scand 50:1177–1186
    • View reference on PubMed
    • View reference on publisher's website
  5. Lautrette A, Peigne V, Watts J, Souweine B, Azoulay E (2008) Surrogate decision makers for incompetent ICU patients: a European perspective. Curr Opin Crit Care 14:714–719
    • View reference on PubMed
    • View reference on publisher's website
  6. Sprung CL, Cohen SL, Sjokvist P, Baras M, Bulow HH, Hovilehto S, Ledoux D, Lippert A, Maia P, Phelan D, Schobersberger W, Wennberg E, Woodcock T, Ethicus Study Group (2003) End-of-life practices in European intensive care units: the Ethicus Study. JAMA 290:790–797
    • View reference on PubMed
    • View reference on publisher's website
  7. Arnold RMM, Kellum JM (2003) Moral justifications for surrogate decision making in the intensive care unit: implications and limitations. [Review]. Crit Care Med 31:347–353
    • View reference on publisher's website
  8. Buchanan AE, Brock DW (1989) Deciding for others: the ethics of surrogate decision making. Cambridge University Press, New York
  9. McAdam JL, Dracup KA, White DB, Fontaine DK, Puntillo KA (2010) Symptom experiences of family members of intensive care unit patients at high risk for dying. Crit Care Med 38:1078–1085
    • View reference on PubMed
    • View reference on publisher's website
  10. Azoulay E, Pochard F, Chevret S, Jourdain M, Bornstain C, Wernet A, Cattaneo I, Annane D, Brun F, Bollaert PE, Zahar JR, Goldgran-Toledano D, Adrie C, Joly LM, Tayoro J, Desmettre T, Pigne E, Parrot A, Sanchez O, Poisson C, Le Gall JR, Schlemmer B, Lemaire F (2002) Impact of a family information leaflet on effectiveness of information provided to family members of intensive care unit patients: a multicenter, prospective, randomized, controlled trial. Am J Respir Crit Care Med 165:438–442
    • View reference on PubMed
  11. Abbott KH, Sago JG, Breen CM, Abernethy AP, Tulsky JA (2001) Families looking back: 1 year after discussion of withdrawal or withholding of life-sustaining support. Crit Care Med 29:197–201
    • View reference on PubMed
    • View reference on publisher's website
  12. Truog RD, Campbell ML, Curtis JR, Haas CE, Luce JM, Rubenfeld GD, Rushton CH, Kaufman DC, American Academy of Critical Care Medicine (2008) Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College of Critical Care Medicine. Crit Care Med 36:953–963
    • View reference on PubMed
    • View reference on publisher's website
  13. Carlet J, Thijs LG, Antonelli M, Cassell J, Cox P, Hill N, Hinds C, Pimentel JM, Reinhart K, Thompson BT (2004) Challenges in end-of-life care in the ICU. Statement of the 5th International Consensus Conference in Critical Care, Brussels, Belgium, April 2003. Intensive Care Med 30:770–784
  14. Sjökvist P, Nilstun T, Svantesson M, Berggren L (1999) Withdrawal of life support––who should decide? Differences in attitudes among the general public, nurses and physicians. Intensive Care Med 25:949–954
  15. Halvorsen K, Forde R, Nortvedt P (2009) The principle of justice in patient priorities in the intensive care unit: the role of significant others. J Med Ethics 35:483–487
    • View reference on PubMed
    • View reference on publisher's website
  16. Svantesson M, Sjokvist P, Thorsén H (2003) End-of-life decisions in Swedish ICUs: how do physicians from the admitting department reason? Intensive Crit Care Nurs 19:241–251
    • View reference on PubMed
    • View reference on publisher's website
  17. Halvorsen K, Forde R, Nortvedt P (2009) Value choices and considerations when limiting intensive care treatment: a qualitative study. Acta Anaesthesiol Scand 53:10–17
    • View reference on PubMed
    • View reference on publisher's website
  18. Bunch EH (2000) Delayed clarification: information, clarification and ethical decisions in critical care in Norway. J Adv Nurs 32:1485–1491
    • View reference on PubMed
    • View reference on publisher's website
  19. Tallgren M, Klepstad P, Petersson J, Skram U, Hynninen M (2005) Ethical issues in intensive care––a survey among Scandinavian intensivists. Acta Anaesthesiol Scand 49:1092–1100
    • View reference on PubMed
    • View reference on publisher's website
  20. Charmaz K (2006) Constructing grounded theory: a practical guide through qualitative analysis. Sage, London
  21. Riessman CK (2008) Narrative methods for the human sciences. Sage, Los Angeles
  22. Curtis JR, White DB (2008) Practical guidance for evidence-based ICU family conferences. Chest 134:835–843
    • View reference on PubMed
    • View reference on publisher's website
  23. Machare Delgado E, Callahan A, Paganelli G, Reville B, Parks SM, Marik PE (2009) Multidisciplinary family meetings in the ICU facilitate end-of-life decision making. Am J Hos Palliat Care 26:295–302
    • View reference on publisher's website
  24. Lautrette A, Ciroldi M, Ksibi H, Azoulay E (2006) End-of-life family conferences: rooted in the evidence. Crit Care Med 34:364–372
    • View reference on publisher's website
  25. Laake JH (2007) Livsavslutning i intensivavdelinger. Tidsskr Nor Laegeforen 127:3235 (Norwegian language)
    • View reference on PubMed
  26. Bulow HH (2004) Ethical considerations in the termination of intensive care. Ugeskr Laeger 166:2352–2356
    • View reference on PubMed
  27. Heyland DK, Rocker GM, O’Callaghan CJ, Dodek PM, Cook DJ (2003) Dying in the ICU: perspectives of family members. Chest 124:392–397
    • View reference on PubMed
    • View reference on publisher's website
  28. Nelson JE, Puntillo KA, Pronovost PJ, Walker AS, McAdam JL, Ilaoa D, Penrod J (2010) In their own words: patients and families define high-quality palliative care in the intensive care unit. Crit Care Med 38:808–818
    • View reference on PubMed
    • View reference on publisher's website
  29. Sjokvist P, Sundin PO, Berggren L (1998) Limiting life support. Experiences with a special protocol. Acta Anaesthesiol Scand 42:232–237
    • View reference on PubMed
    • View reference on publisher's website
  30. Melltorp G, Nilstun T (1996) Decisions to forego life-sustaining treatment and the duty of documentation. Intensive Care Med 22:1015–1019
  31. Emanuel EJ, Emanuel LL (1992) Four models of the physician-patient relationship. JAMA 267:2221–2226
    • View reference on PubMed
    • View reference on publisher's website
  32. Emanuel EJ, Emanuel LL (1992) Proxy decision making for incompetent patients. An ethical and empirical analysis. JAMA 267:2067–2071
    • View reference on PubMed
    • View reference on publisher's website
  33. Latour JM, Fulbrook P, Albarran JW (2009) EfCCNa survey: European intensive care nurses’ attitudes and beliefs towards end-of-life care. Nurs Crit Care 14:110–121
    • View reference on PubMed
    • View reference on publisher's website
  34. Ferrand E, Lemaire F, Regnier B, Kuteifan K, Badet M, Asfar P, Jaber S, Chagnon JL, Renault A, Robert R, Pochard F, Herve C, Brun-Buisson C, Duvaldestin P, French RESSENTI Group (2003) Discrepancies between perceptions by physicians and nursing staff of intensive care unit end-of-life decisions. Am J Respir Crit Care Med 167:1310–1315
    • View reference on PubMed
    • View reference on publisher's website
  35. Norton SA (2001) Working toward consensus: providers’ strategies to shift patients from curative to palliative treatment choices. Res Nurs Health 24:258–269
    • View reference on PubMed
    • View reference on publisher's website
  36. Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD (2001) The family conference as a focus to improve communication about end-of-life care in the intensive care unit: Opportunities for improvement. Crit Care Med 29:26–33
    • View reference on publisher's website
  37. White DB, Malvar G, Karr J, Lo B, Curtis JR (2010) Expanding the paradigm of the physician’s role in surrogate decision-making: an empirically derived framework. Crit Care Med 38:743–750
    • View reference on PubMed
    • View reference on publisher's website
  38. Puntillo KA, McAdam JL (2006) Communication between physicians and nurses as a target for improving end-of-life care in the intensive care unit: challenges and opportunities for moving forward. Crit Care Med 34:332–340
    • View reference on publisher's website
  39. Ambuel B, Weissman DE (2005) Fast fact and concept #16: conducting a family conference. Available at: http://www.aging.pitt.edu/professionals/resources-polst/Fast-Fact-16-Family-Conf-2005.pdf Accessed Dec 14, 2010
  40. Fallowfield L, Jenkins V, Farewell V, Saul J, Duffy A, Eves R (2002) Efficacy of a Cancer Research UK communication skills training model for oncologists: a randomised controlled trial. Lancet 359:650–656
    • View reference on PubMed
    • View reference on publisher's website

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