Half the family members of intensive care unit patients do not want to share in the decision-making process: A study in 78 French intensive care units*

In admissions to the intensive care unit (ICU), there is a high possibility of a life-threatening condition and possible emotional distress for family members. When the family is distressed and hospitalized, a significant level of stress and anxiety will be generated among family members, thereby decreasing their ability to make responsible decisions. As a result, the family members need full and up-to-date details, helping them to retain hope, and this contributes to lower stress levels. While there is growing evidence of the effectiveness of shared decision-making for family members who are directly involved in decisions, particularly regarding shared decision-making in the Malaysian context, there is less evidence that supported decisions help overall outcome. This study aims to developing the family satisfaction with decision making in the Intensive Care Unit (FS-ICU)-33 Malay language version of family member’s satisfaction with care and decision making during their stay at the intensive care units. A quantitative, cross-sectional validation study and purposive sampling was conducted from 1st November 2017 and 10 October 2018 to January 2020 among 208 of family members. The family members of the ICU patients involved in this study had an excellent satisfaction level with service care. Higher satisfaction in ICU care resulting in higher decision-making satisfaction and vice versa.

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A REVIEW ON DECISION PROTOCOL AND FATWA IN MALAYSIA DISCUSSING ISSUE OF WITHHOLDING AND WITHDRAWAL OF LIFE-SUSTAINING TREATMENT IN INTENSIVE CARE UNIT

Malaysian Journal of Syariah and Law ◽

10.33102/mjsl.vol9no2.296 ◽

2021 ◽

Vol 9 (2) ◽

pp. 1-18

Author(s):

Muhamad Rafiqi Hehsan ◽

Wan Fadzlina Wan Muhd Shukeri

Keyword(s):

Intensive Care Unit ◽

Decision Making ◽

Intensive Care ◽

Treatment Withdrawal ◽

Decision Making Process ◽

Final Decision ◽

The Family ◽

Life Sustaining Treatment ◽

The Relationship

Withholding and withdrawal of life-sustaining treatments is one of the hot topics discussing in intensive care unit as most of the death occurs as a result of it. This point of transition from active intervention to the palliation process required a crucial decision-making process. The decision conveys information to families to be well prepared beforehand especially during the process of withdrawing life-sustaining treatment. Once the final decision to withdraw the treatment has been made, procedure of cessation of care, treatment withdrawal and nature of follow-up support will be informed to the family members. This article aims to explore the relationship between decision in withholding and withdrawal of life-sustaining treatment based on Malaysian intensive care unit protocol and the related fatwa in Malaysia. The methodology chosen for this study is content analysis of the relevant published literatures. This study reveals the decision for withholding and withdrawal life sustaining treatment in intensive care unit has correlation between the protocol and related fatwa in Malaysia.

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Family Members’ Informal Roles in End-of-Life Decision Making in Adult Intensive Care Units

American Journal of Critical Care ◽

10.4037/ajcc2012520 ◽

2012 ◽

Vol 21 (1) ◽

pp. 43-51 ◽

Cited By ~ 42

Author(s):

Jill R. Quinn ◽

Madeline Schmitt ◽

Judith Gedney Baggs ◽

Sally A. Norton ◽

Mary T. Dombeck ◽

...

Keyword(s):

Health Care ◽

Decision Making ◽

Intensive Care ◽

End Of Life ◽

Intensive Care Units ◽

Family Members ◽

The Family ◽

Decision Making Processes ◽

End Of Life Decision ◽

Life Decision

Background To support the process of effective family decision making, it is important to recognize and understand informal roles that various family members may play in the end-of-life decision-making process. Objective To describe some informal roles consistently enacted by family members involved in the process of end-of-life decision making in intensive care units. Methods Ethnographic study. Data were collected via participant observation with field notes and semistructured interviews on 4 intensive care units in an academic health center in the mid-Atlantic United States from 2001 to 2004. The units studied were a medical, a surgical, a burn and trauma, and a cardiovascular intensive care unit. Participants Health care clinicians, patients, and family members. Results Informal roles for family members consistently observed were primary caregiver, primary decision maker, family spokesperson, out-of-towner, patient’s wishes expert, protector, vulnerable member, and health care expert. The identified informal roles were part of families’ decision-making processes, and each role was part of a potentially complicated family dynamic for end-of-life decision making within the family system and between the family and health care domains. Conclusions These informal roles reflect the diverse responses to demands for family decision making in what is usually a novel and stressful situation. Identification and description of these informal roles of family members can help clinicians recognize and understand the functions of these roles in families’ decision making at the end of life and guide development of strategies to support and facilitate increased effectiveness of family discussions and decision-making processes.

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Investigation of the association between family members’ satisfaction with patient care in the Intensive Care Unit, spirituality and resilience.

10.21203/rs.2.19526/v1 ◽

2019 ◽

Author(s):

Iokasti Papathanasiou ◽

Vasileios Tzenetidis ◽

Athanasios Nikolentzos ◽

Pavlos Sarafis ◽

Maria Malliarou

Keyword(s):

Intensive Care Unit ◽

Decision Making ◽

Intensive Care ◽

Patient Care ◽

Perceived Stress ◽

Family Members ◽

Satisfaction With Care ◽

Psychological Burden ◽

Unit Scale ◽

The Family

Abstract Background: The admission of a patient in the Intensive Care Unit (ICU) is a traumatic experience for the patient himself and his support group which mainly consists of his family members. The psychological burden of the family members increases, as they experience negative feelings. The implementation of family-centered care helps family members to satisfy their needs, eliminates psychological impact and improves patient’s health outcomes. The aim of this study is to investigate the family members’ satisfaction with patient care in the ICU, their perceived stress, spirituality and resilience.Methods: One hundred and four family members of patients admitted in the ICU for greater than 48 hours between January and March 2019 were enrolled. The questionnaire included the following psychometric tools: the Family Satisfaction with care in the Intensive Care Unit scale, the Perceived Stress Scale, the Connor – Davidson Resilience Scale, the Daily Spiritual Experience Scale and the Acute Physiology and Chronic Health Evaluation Scale. Results: The mean value of satisfaction with care was 88,9%, of satisfaction with decision making was 79,1% and of the overall satisfaction was 85%. Resilience was associated with perceived stress (p<0,001) and with spirituality (p= 0,019). Spirituality was associated with satisfaction with care (p= 0.013), with satisfaction with decision making (p= 0,018) and with the overall satisfaction (p= 0,003).Conclusions: Family members were highly satisfied. Those with higher spirituality score were more satisfied and those who were more resilient had less perceived stress. These data suggest that interventions should aim at increasing resilience and providing spiritual assistance to family members of ICU treated patients.

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Humanizing the intensive care unit experience in a comprehensive cancer center: A patient- and family-centered improvement study

Palliative & Supportive Care ◽

10.1017/s1478951521001838 ◽

2021 ◽

pp. 1-7

Author(s):

John A. Cuenca ◽

Nirmala Manjappachar ◽

Joel Nates ◽

Tiffany Mundie ◽

Lisa Beil ◽

...

Keyword(s):

Intensive Care Unit ◽

Decision Making ◽

Intensive Care ◽

Family Members ◽

Comprehensive Cancer Center ◽

Cancer Center ◽

Decision Making Process ◽

Post Intervention ◽

Waiting Room ◽

Family Centered

Abstract Objectives Improving family-centered outcomes is a priority in oncologic critical care. As part of the Intensive Care Unit (ICU) Patient-Centered Outcomes Research Collaborative, we implemented patient- and family-centered initiatives in a comprehensive cancer center. Methods A multidisciplinary team was created to implement the initiatives. We instituted an open visitation policy (OVP) that revamped the use of the two-way communication boards and enhanced the waiting room experience by hosting ICU family-centered events. To assess the initiatives’ effects, we carried out pre-intervention (PRE) and post-intervention (POST) family/caregiver and ICU practitioner surveys. Results A total of 159 (PRE = 79, POST = 80) family members and 147 (PRE = 95, POST = 52) ICU practitioners participated. Regarding the decision-making process, family members felt more included (40.5% vs. 68.8%, p < 0.001) and more supported (29.1% vs. 48.8%, p = 0.011) after the implementation of the initiatives. The caregivers also felt more control over the decision-making process in the POST survey (34.2% vs. 56.3%, p = 0.005). Although 33% of the ICU staff considered OVP was beneficial for the ICU, 41% disagreed and 26% were neutral. Only half of them responded that OVP was beneficial for patients and 63% agreed that OVP was beneficial for families. Half of the practitioners agreed that OVP resulted in additional work for staff. Significance of results Our project effectively promoted patient- and family-centered care. The families expressed satisfaction with the communication of information and the decision-making process. However, the ICU staff felt that the initiatives increased their work load. Further research is needed to understand whether making this project universal or introducing additional novel practices would significantly benefit patients admitted to the ICU and their family.

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Decision-making in intensive care medicine – A review

Journal of the Intensive Care Society ◽

10.1177/1751143717746566 ◽

2017 ◽

Vol 19 (3) ◽

pp. 247-258 ◽

Cited By ~ 11

Author(s):

Fiona R James ◽

Nicola Power ◽

Shondipon Laha

Keyword(s):

Intensive Care Unit ◽

Decision Making ◽

Intensive Care ◽

Intensive Care Unit Admission ◽

Intensive Care Units ◽

Severity Of Illness ◽

Patient Choice ◽

Decision Making Process ◽

Do Not Resuscitate ◽

Admission Decisions

Decision-making by intensivists around accepting patients to intensive care units is a complex area, with often high-stakes, difficult, emotive decisions being made with limited patient information, high uncertainty about outcomes and extreme pressure to make these decisions quickly. This is exacerbated by a lack of clear guidelines to help guide this difficult decision-making process, with the onus largely relying on clinical experience and judgement. In addition to uncertainty compounding decision-making at the individual clinical level, it is further complicated at the multi-speciality level for the senior doctors and surgeons referring to intensive care units. This is a systematic review of the existing literature about this decision-making process and the factors that help guide these decisions on both sides of the intensive care unit admission dilemma. We found many studies exist assessing the patient factors correlated with intensive care unit admission decisions. Analysing these together suggests that factors consistently found to be correlated with a decision to admit or refuse a patient from intensive care unit are bed availability, severity of illness, initial ward or team referred from, patient choice, do not resuscitate status, age and functional baseline. Less research has been done on the decision-making process itself and the factors that are important to the accepting intensivists; however, similar themes are seen. Even less research exists on referral decision and demonstrates that in addition to the factors correlated with intensive care unit admission decisions, other wider variables are considered by the referring non-intensivists. No studies are available that investigate the decision-making process in referring non-intensivists or the mismatch of processes and pressure between the two sides of the intensive care unit referral dilemma.

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Investigation of the association between family members’ satisfaction with patient care in the Intensive Care Unit, spirituality and resilience

10.21203/rs.3.rs-52226/v1 ◽

2020 ◽

Author(s):

Iokasti Papathanasiou ◽

Vasileios Tzenetidis ◽

Athanasios Nikolentzos ◽

Pavlos Sarafis ◽

Maria Constantinou ◽

...

Keyword(s):

Intensive Care Unit ◽

Decision Making ◽

Intensive Care ◽

Patient Care ◽

Perceived Stress ◽

Family Members ◽

Satisfaction With Care ◽

Psychological Burden ◽

Unit Scale ◽

The Family

Abstract Background: The admission of a patient in the Intensive Care Unit (ICU) is a traumatic experience for the patient himself and his support group which mainly consists of his family members. The psychological burden of the family members increases, as they experience negative feelings. The implementation of family-centered care helps family members to satisfy their needs, eliminates psychological impact and improves patient’s health outcomes. The aim of this study is to investigate the family members’ satisfaction with patient care in the ICU, their perceived stress, spirituality and resilience.Methods: One hundred and four family members of patients admitted in the ICU for greater than 48 hours between January and March 2019 were enrolled. The questionnaire included the following psychometric tools: the Family Satisfaction with care in the Intensive Care Unit scale, the Perceived Stress Scale, the Connor – Davidson Resilience Scale, the Daily Spiritual Experience Scale and the Acute Physiology and Chronic Health Evaluation Scale.Results: The mean value of satisfaction with care was 88,9%, of satisfaction with decision making was 79,1% and of the overall satisfaction was 85%. Resilience was associated with perceived stress (p<0,001) and with spirituality (p= 0,019). Spirituality was associated with satisfaction with care (p= 0.013), with satisfaction with decision making (p= 0,018) and with the overall satisfaction (p= 0,003).Conclusions: Family members were highly satisfied. Those with higher spirituality score were more satisfied and those who were more resilient had less perceived stress. These data suggest that interventions should aim at increasing resilience and providing spiritual assistance to family members of ICU treated patients.

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The Effect of Information Booklets on Family Members’ Satisfaction with Decision Making in an Intensive Care Unit of Malaysia

Journal of Young Pharmacists ◽

10.5530/jyp.2016.2.13 ◽

2016 ◽

Vol 8 (2) ◽

pp. 128-132 ◽

Cited By ~ 1

Author(s):

Hamidah Othman ◽

Pathmawathi Subramanian ◽

Noor Azizah Mohd Ali ◽

Haszalina Hassan ◽

Mainul Haque

Keyword(s):

Intensive Care Unit ◽

Decision Making ◽

Intensive Care ◽

Family Members

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Sense of responsibility in ICU end-of-life decision-making: Relatives’ experiences

Nursing Ethics ◽

10.1177/0969733017703697 ◽

2017 ◽

Vol 26 (1) ◽

pp. 270-279 ◽

Cited By ~ 1

Author(s):

Ranveig Lind

Keyword(s):

Intensive Care Unit ◽

Decision Making ◽

Intensive Care ◽

End Of Life ◽

Secondary Analysis ◽

Active Role ◽

Decision Making Process ◽

Science Data ◽

End Of Life Decision ◽

Life Decision

Background: Relatives of intensive care unit patients who lack or have reduced capacity to consent are entitled to information and participation in decision-making together with the patient. Practice varies with legislation in different countries. In Norway, crucial decisions such as withdrawing treatment are made by clinicians, usually morally justified to relatives with reference to the principle of non-maleficence. The relatives should, however, be consulted about whether they know what the patient would have wished in the situation. Research objectives: To examine and describe relatives’ experiences of responsibility in the intensive care unit decision-making process. Research design: A secondary analysis of interviews with bereaved relatives of intensive care unit patients was performed, using a narrative analytical approach. Participants and research context: In all, 27 relatives of 21 deceased intensive care unit patients were interviewed about their experiences from the end-of-life decision-making process. Most interviews took place in the participants’ homes, 3–12 months after the patient’s death. Ethical considerations: Based on informed consent, the study was approved by the Data Protection Official of the Norwegian Social Science Data Services and by the Regional Committee for Medical and Health Research Ethics. Findings: The results show that intensive care unit relatives experienced a sense of responsibility in the decision-making process, independently of clinicians’ intention of sparing them. Some found this troublesome. Three different variants of participation were revealed, ranging from paternalism to a more active role for relatives. Discussion: For the study participants, the sense of responsibility reflects the fact that ethics and responsibility are grounded in the individual’s relationship to other people. Relatives need to be included in a continuous dialogue over time to understand decisions and responsibility. Conclusion: Nurses and physicians should acknowledge and address relatives’ sense of responsibility, include them in regular dialogue and help them separate their responsibility from that of the clinicians.

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Making a Connection: Family Experiences With Bedside Rounds in the Intensive Care Unit

Critical Care Nurse ◽

10.4037/ccn2018128 ◽

2018 ◽

Vol 38 (3) ◽

pp. 18-26 ◽

Cited By ~ 7

Author(s):

Shawn E. Cody ◽

Susan Sullivan-Bolyai ◽

Patricia Reid-Ponte

Keyword(s):

Intensive Care Unit ◽

Intensive Care ◽

Health Care Providers ◽

Family Members ◽

Management Style ◽

Family Management ◽

Care Providers ◽

Bedside Rounds ◽

The Family ◽

The Future

Background The hospitalization of a family member in an intensive care unit can be stressful for the family. Family bedside rounds is a way for the care team to inform family members, answer questions, and involve them in care decisions. The experiences of family members with intensive care unit bedside rounds have been examined in few studies. Objectives To describe (1) the experiences of family members of patients in the intensive care unit who participated in family bedside rounds (ie, view of the illness, role in future management, and long-term consequences on individual and family functioning) and (2) the experiences of families who chose not to participate in family bedside rounds and their perspectives regarding its value, their illness view, and future involvement in care. Methods A qualitative descriptive study was done, undergirded by the Family Management Style Framework, examining families that participated and those that did not. Results Most families that participated (80%) found the process helpful. One overarching theme, Making a Connection: Comfort and Confidence, emerged from participating families. Two major factors influenced how that connection was made: consistency and preparing families for the future. Three types of consistency were identified: consistency in information being shared, in when rounds were being held, and in informing families of rounding delays. In terms of preparing families for the future, families appeared to feel comfortable with the situation when a connection was present. When any of the factors were missing, families described feelings of anger, frustration, and fear. Family members who did not participate described similar feelings and fear of the unknown because of not having participated. Conclusion What health care providers say to patients’ families matters. Families may need to be included in decision-making with honest, consistent, easy-to-understand information.

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