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

Abstract

PurposeThe 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?MethodsA 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.ResultsThe 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.ConclusionsFamilies 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.Electronic supplementary materialThe online version of this article (doi:10.1007/s00134-011-2253-x) contains supplementary material, which is available to authorized users.

Talking With Parents About End-of-Life Decisions for Their Children

“…[39][40][41][42][43][44] What our study adds is the insight that parents appreciated receiving this detailed information, as evidenced by their reactions and their questions in return. It may be postulated that the provision of relevant information helps parents to grasp what is happening to their child and regain some feeling of control.…”

“…At the same time, it remains important that physicians use clear, unambiguous words, do not lose themselves in too many details and complex hypothetical scenarios, and keep encouraging parents to ask questions and present their points of view. 40,43,[49][50][51][52][53] Our study has several limitations. An important limitation is that our study was restricted to 2 medical centers, which was unavoidable given the logistical demands of the study.…”

I Don’t Want to Be the One Saying ‘We Should Just Let Him Die’: Intrapersonal Tensions Experienced by Surrogate Decision Makers in the ICU

“…7 Studies designed to explore sources of difficulty in surrogate decision making have mainly examined external factors, such as uncertainty about prognosis or a loved one's preferences, poor communication or conflict with clinicians, or discomfort in the ICU environment. [8][9][10][11][12][13][14] Interventions to improve surrogate decision making similarly focus on strategies to provide better prognostic information, values clarification, and surrogateclinician communication. [15][16][17][18][19][20][21] There has been little exploration of how family members grapple with intrapersonal Electronic supplementary material The online version of this article (doi:10.1007/s11606-012-2129-y) contains supplementary material, which is available to authorized users.…”

Has survival increased in cancer patients admitted to the ICU? We are not sure

“…Conducting an ICU trial remains a delicate task in which communication and shared discussions and decisions are the key for providing optimal care. Unless supported by objective arguments and well communicated to the relatives and the team, such ''wait and see'' policy is common [18,20], but may be unfair given the detrimental effects on the patients, relatives, healthcare providers, and society [21].…”