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Published in: Intensive Care Medicine 7/2011

Open Access 01-07-2011 | Original

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

Authors: Ranveig Lind, Geir F. Lorem, Per Nortvedt, Olav Hevrøy

Published in: Intensive Care Medicine | Issue 7/2011

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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.
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Literature
1.
go back to reference 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 31:1215–1221PubMedCrossRef 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 31:1215–1221PubMedCrossRef
3.
go back to reference 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 357:9–14PubMedCrossRef 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 357:9–14PubMedCrossRef
4.
go back to reference Moselli NM, Debernardi F, Piovano F (2006) Forgoing life sustaining treatments: differences and similarities between North America and Europe. [Review]. Acta Anaesthesiol Scand 50:1177–1186PubMedCrossRef Moselli NM, Debernardi F, Piovano F (2006) Forgoing life sustaining treatments: differences and similarities between North America and Europe. [Review]. Acta Anaesthesiol Scand 50:1177–1186PubMedCrossRef
5.
go back to reference 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 14:714–719PubMedCrossRef 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 14:714–719PubMedCrossRef
6.
go back to reference 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 290:790–797PubMedCrossRef 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 290:790–797PubMedCrossRef
7.
go back to reference Arnold RMM, Kellum JM (2003) Moral justifications for surrogate decision making in the intensive care unit: implications and limitations. [Review]. Crit Care Med 31:347–353CrossRef Arnold RMM, Kellum JM (2003) Moral justifications for surrogate decision making in the intensive care unit: implications and limitations. [Review]. Crit Care Med 31:347–353CrossRef
8.
go back to reference Buchanan AE, Brock DW (1989) Deciding for others: the ethics of surrogate decision making. Cambridge University Press, New York Buchanan AE, Brock DW (1989) Deciding for others: the ethics of surrogate decision making. Cambridge University Press, New York
9.
go back to reference 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 38:1078–1085PubMedCrossRef 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 38:1078–1085PubMedCrossRef
10.
go back to reference 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 165:438–442PubMed 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 165:438–442PubMed
11.
go back to reference 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 29:197–201PubMedCrossRef 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 29:197–201PubMedCrossRef
12.
go back to reference 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 36:953–963PubMedCrossRef 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 36:953–963PubMedCrossRef
13.
go back to reference 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 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.
go back to reference 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 25:949–954PubMedCrossRef 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 25:949–954PubMedCrossRef
15.
go back to reference 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 35:483–487PubMedCrossRef 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 35:483–487PubMedCrossRef
16.
go back to reference 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 19:241–251PubMedCrossRef 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 19:241–251PubMedCrossRef
17.
go back to reference Halvorsen K, Forde R, Nortvedt P (2009) Value choices and considerations when limiting intensive care treatment: a qualitative study. Acta Anaesthesiol Scand 53:10–17PubMedCrossRef Halvorsen K, Forde R, Nortvedt P (2009) Value choices and considerations when limiting intensive care treatment: a qualitative study. Acta Anaesthesiol Scand 53:10–17PubMedCrossRef
18.
go back to reference Bunch EH (2000) Delayed clarification: information, clarification and ethical decisions in critical care in Norway. J Adv Nurs 32:1485–1491PubMedCrossRef Bunch EH (2000) Delayed clarification: information, clarification and ethical decisions in critical care in Norway. J Adv Nurs 32:1485–1491PubMedCrossRef
19.
go back to reference Tallgren M, Klepstad P, Petersson J, Skram U, Hynninen M (2005) Ethical issues in intensive care––a survey among Scandinavian intensivists. Acta Anaesthesiol Scand 49:1092–1100PubMedCrossRef Tallgren M, Klepstad P, Petersson J, Skram U, Hynninen M (2005) Ethical issues in intensive care––a survey among Scandinavian intensivists. Acta Anaesthesiol Scand 49:1092–1100PubMedCrossRef
20.
go back to reference Charmaz K (2006) Constructing grounded theory: a practical guide through qualitative analysis. Sage, London Charmaz K (2006) Constructing grounded theory: a practical guide through qualitative analysis. Sage, London
21.
go back to reference Riessman CK (2008) Narrative methods for the human sciences. Sage, Los Angeles Riessman CK (2008) Narrative methods for the human sciences. Sage, Los Angeles
22.
go back to reference Curtis JR, White DB (2008) Practical guidance for evidence-based ICU family conferences. Chest 134:835–843PubMedCrossRef Curtis JR, White DB (2008) Practical guidance for evidence-based ICU family conferences. Chest 134:835–843PubMedCrossRef
23.
go back to reference 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 26:295–302CrossRef 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 26:295–302CrossRef
24.
go back to reference Lautrette A, Ciroldi M, Ksibi H, Azoulay E (2006) End-of-life family conferences: rooted in the evidence. Crit Care Med 34:364–372CrossRef Lautrette A, Ciroldi M, Ksibi H, Azoulay E (2006) End-of-life family conferences: rooted in the evidence. Crit Care Med 34:364–372CrossRef
25.
go back to reference Laake JH (2007) Livsavslutning i intensivavdelinger. Tidsskr Nor Laegeforen 127:3235 (Norwegian language)PubMed Laake JH (2007) Livsavslutning i intensivavdelinger. Tidsskr Nor Laegeforen 127:3235 (Norwegian language)PubMed
26.
go back to reference Bulow HH (2004) Ethical considerations in the termination of intensive care. Ugeskr Laeger 166:2352–2356PubMed Bulow HH (2004) Ethical considerations in the termination of intensive care. Ugeskr Laeger 166:2352–2356PubMed
27.
go back to reference Heyland DK, Rocker GM, O’Callaghan CJ, Dodek PM, Cook DJ (2003) Dying in the ICU: perspectives of family members. Chest 124:392–397PubMedCrossRef Heyland DK, Rocker GM, O’Callaghan CJ, Dodek PM, Cook DJ (2003) Dying in the ICU: perspectives of family members. Chest 124:392–397PubMedCrossRef
28.
go back to reference 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 38:808–818PubMedCrossRef 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 38:808–818PubMedCrossRef
29.
go back to reference Sjokvist P, Sundin PO, Berggren L (1998) Limiting life support. Experiences with a special protocol. Acta Anaesthesiol Scand 42:232–237PubMedCrossRef Sjokvist P, Sundin PO, Berggren L (1998) Limiting life support. Experiences with a special protocol. Acta Anaesthesiol Scand 42:232–237PubMedCrossRef
30.
go back to reference Melltorp G, Nilstun T (1996) Decisions to forego life-sustaining treatment and the duty of documentation. Intensive Care Med 22:1015–1019PubMedCrossRef Melltorp G, Nilstun T (1996) Decisions to forego life-sustaining treatment and the duty of documentation. Intensive Care Med 22:1015–1019PubMedCrossRef
31.
go back to reference Emanuel EJ, Emanuel LL (1992) Four models of the physician-patient relationship. JAMA 267:2221–2226PubMedCrossRef Emanuel EJ, Emanuel LL (1992) Four models of the physician-patient relationship. JAMA 267:2221–2226PubMedCrossRef
32.
go back to reference Emanuel EJ, Emanuel LL (1992) Proxy decision making for incompetent patients. An ethical and empirical analysis. JAMA 267:2067–2071PubMedCrossRef Emanuel EJ, Emanuel LL (1992) Proxy decision making for incompetent patients. An ethical and empirical analysis. JAMA 267:2067–2071PubMedCrossRef
33.
go back to reference Latour JM, Fulbrook P, Albarran JW (2009) EfCCNa survey: European intensive care nurses’ attitudes and beliefs towards end-of-life care. Nurs Crit Care 14:110–121PubMedCrossRef Latour JM, Fulbrook P, Albarran JW (2009) EfCCNa survey: European intensive care nurses’ attitudes and beliefs towards end-of-life care. Nurs Crit Care 14:110–121PubMedCrossRef
34.
go back to reference 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 167:1310–1315PubMedCrossRef 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 167:1310–1315PubMedCrossRef
35.
go back to reference Norton SA (2001) Working toward consensus: providers’ strategies to shift patients from curative to palliative treatment choices. Res Nurs Health 24:258–269PubMedCrossRef Norton SA (2001) Working toward consensus: providers’ strategies to shift patients from curative to palliative treatment choices. Res Nurs Health 24:258–269PubMedCrossRef
36.
go back to reference 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 29:26–33CrossRef 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 29:26–33CrossRef
37.
go back to reference 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 38:743–750PubMedCrossRef 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 38:743–750PubMedCrossRef
38.
go back to reference 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 34:332–340CrossRef 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 34:332–340CrossRef
40.
go back to reference 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 359:650–656PubMedCrossRef 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 359:650–656PubMedCrossRef
Metadata
Title
Family members’ experiences of “wait and see” as a communication strategy in end-of-life decisions
Authors
Ranveig Lind
Geir F. Lorem
Per Nortvedt
Olav Hevrøy
Publication date
01-07-2011
Publisher
Springer-Verlag
Published in
Intensive Care Medicine / Issue 7/2011
Print ISSN: 0342-4642
Electronic ISSN: 1432-1238
DOI
https://doi.org/10.1007/s00134-011-2253-x

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