Dataset Information

Family members' experiences of "wait and see" as a communication strategy in end-of-life decisions.

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.

SUBMITTER: Lind R

PROVIDER: S-EPMC3126999 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting?This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.

Project description:Background/objectiveThe COVID-19 pandemic has resulted in rapid changes to end-of-life care for hospitalized older adults and their families, including visitation restrictions. We examined bereaved families' perceptions of the quality of end-of-life communication among Veterans, families and staff in Veterans Affairs (VA) medical centers during the COVID-19 pandemic.DesignQualitative descriptive study using data from a survey of bereaved family members of Veterans administered from March-June 2020. Data were analyzed using qualitative content analysis.SettingVA medical centers with the highest numbers of COVID-19 cases during the study period.ParticipantsNext-of-kin of 328 Veterans who died in one of 37 VA medical centers' acute care, intensive care, nursing home, or hospice units.MeasurementsOpen-ended survey questions (response rate = 37%) about family member's perceptions of: (1) communication with the healthcare team about the patient, (2) communication with the patient, and (3) use of remote communication technologies.ResultsBereaved family members identified contextual factors perceived to impact communication quality including: allowing family at the bedside when death is imminent, fears that the patient died alone, and overall perceptions of VA care. Characteristics of perceived high-quality communication included staff availability for remote communication and being kept informed of the patient's condition and plan of care. Low-quality communication with staff was perceived to result from limited access to staff, insufficient updates regarding the patient's condition, and when the family member was not consulted about care decision-making. Communication quality with the patient was facilitated or impeded by the availability and use of video-enabled remote technologies.ConclusionCommunication between patients, families, and healthcare teams at the end of life remains critically important during times of limited in-person visitation. Families report that low-quality communication causes profound distress that can affect the quality of dying and bereavement. Innovative strategies are needed to ensure that high-quality communication occurs despite pandemic-related visitation restrictions.

Project description:BackgroundNursing home residents (NHR) are characterized by increasing frailty, multimorbidity and care dependency. These conditions result in frequent hospital transfers which can lead to negative effects on residents' health status and are often avoidable. Reasons for emergency department (ED) visits or hospital admissions are complex. Prior research indicated factors influencing transfer decisions in view of nursing staff and general practitioners. The aim of this systematic review is to explore how family members experience and influence transfers from nursing home (NH) to hospital and how they are involved in the transfer decision.MethodsA systematic literature search was performed in Medline via PubMed, Ebsco Scopus and CINAHL in May 2018. Studies were eligible if they contained information a) about the decision to transfer NHR to hospital and b) the experiences or influence of family members. The review followed Joanna Briggs Institute's (JBI) approach for qualitative systematic reviews. Screening, selection and quality appraisal of studies were performed independently by two reviewers. Synthesis of qualitative data was conducted through meta-aggregation.ResultsAfter screening of n?=?2863 articles, in total n?=?10 qualitative studies were included in the review. Results indicate that family members of NHR experience decision-making before hospitalization differently. They mainly reported NH-related, hospital-related, and family/resident-related factors influencing the transfer decision. The involvement of family members in the decision-making process varies - from no involvement to insistence on a decision in favor of their personal preferences. However, hospital transfer decisions and other treatment decisions (e.g. advance care planning (ACP) discussions) were commonly discussed with physicians and nurses. Conflicts between family members and healthcare providers mostly arose around the interpretation of resident's best interest. In general, family members perceive discussions as challenging thus leading to emotional stress and discomfort.ConclusionThe influence of NHR family members concerning hospital transfer decisions varies. Family members are an important link for communication between resident and medical staff and for communication between NH and hospital. Interventions aiming to reduce hospitalization rates have to take these findings into account.

Project description:RationaleCommunication with family of critically ill patients is often poor and associated with family distress.ObjectivesTo determine if an intensive care unit (ICU) communication facilitator reduces family distress and intensity of end-of-life care.MethodsWe conducted a randomized trial at two hospitals. Eligible patients had a predicted mortality greater than or equal to 30% and a surrogate decision maker. Facilitators supported communication between clinicians and families, adapted communication to family needs, and mediated conflict.Measurements and main resultsOutcomes included depression, anxiety, and post-traumatic stress disorder (PTSD) among family 3 and 6 months after ICU and resource use. We identified 488 eligible patients and randomized 168. Of 352 eligible family members, 268 participated (76%). Family follow-up at 3 and 6 months ranged from 42 to 47%. The intervention was associated with decreased depressive symptoms at 6 months (P = 0.017), but there were no significant differences in psychological symptoms at 3 months or anxiety or PTSD at 6 months. The intervention was not associated with ICU mortality (25% control vs. 21% intervention; P = 0.615) but decreased ICU costs among all patients (per patient: $75,850 control, $51,060 intervention; P = 0.042) and particularly among decedents ($98,220 control, $22,690 intervention; P = 0.028). Among decedents, the intervention reduced ICU and hospital length of stay (28.5 vs. 7.7 d and 31.8 vs. 8.0 d, respectively; P < 0.001).ConclusionsCommunication facilitators may be associated with decreased family depressive symptoms at 6 months, but we found no significant difference at 3 months or in anxiety or PTSD. The intervention reduced costs and length of stay, especially among decedents. This is the first study to find a reduction in intensity of end-of-life care with similar or improved family distress. Clinical trial registered with www.clinicaltrials.gov (NCT 00720200).