Surrogate Decision Research Articles

Doing the Right Thing: Aligning Plans With Goals and Values for Pediatric Patients.

Doing the Right Thing: Aligning Plans With Goals and Values for Pediatric Patients.

Attitudes toward withholding antibiotics from people with dementia lacking decisional capacity: findings from a survey of Canadian stakeholders

BackgroundHealthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity.MethodsWe conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other correlates of attitudes, including support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death.ResultsSupport for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics.ConclusionsFindings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered.

End-of-Life Decision-Making in Intensive Care Ten Years after a Law on Advance Directives in Germany.

Background and Objectives: Mortality on Intensive Care Units (ICUs) is high and death frequently occurs after decisions to limit life-sustaining therapies. An advance directive is a tool meant to preserve patient autonomy by guiding anticipated future treatment decisions once decision-making capacity is lost. Since September 2009, advance directives are legally binding for the caregiver team and the patients’ surrogate decision-maker in Germany. The change in frequencies of end-of-life decisions (EOLDs) and completed advance directives among deceased ICU patients ten years after the enactment of a law on advance directives in Germany is unknown. Materials and Methods: Retrospective analysis on all deceased patients of surgical ICUs of a German university medical center from 08/2008 to 09/2009 and from 01/2019 to 09/2019. Frequency of EOLDs and advance directives and the process of EOLDs were compared between patients admitted before and after the change in legislation. (No. of ethical approval EA2/308/20) Results: Significantly more EOLDs occurred in the 2019 cohort compared to the 2009 cohort (85.8% vs. 70.7% of deceased patients, p = 0.006). The number of patients possessing an advance directive to express a living or therapeutic will was higher in the 2019 cohort compared to the 2009 cohort (26.4% vs. 8.9%; difference: 17.5%, p < 0.001). Participation of the patients’ family in the EOLD process (74.7% vs. 60.9%; difference: 13.8%, p = 0.048) and the frequency of documentation of EOLD-relevant information (50.0% vs. 18.7%; difference: 31.3%, p < 0.001) increased from 2009 to 2019. Discussion: During a ten-year period from 2009 to 2019, the frequency of EOLDs and the completion rate of advance directives have increased considerably. In addition, EOLD-associated communication and documentation have further improved.

Palliative Care Principles and Anesthesiology Clinical Practice: Current Perspectives.

BackgroundPalliative care is a person-centered approach aiming to relieve patient’s health-related suffering and it is often needed when caring for critically ill patients to manage symptoms and identify goals of care.AimTo describe the integration of palliative care principles in anesthesiology clinical practice, within and outside the ICU and to analyze the additional challenges that COVID-19 pandemic is posing in this context.MethodsFor the purpose of this review, PubMed database was searched for studies concerning palliative care and end of life care, in contexts involving anesthesiologists and intensivists, published in the last 5 years.ResultsAnesthesiologists and intensivists integrate palliative care within their daily practice providing symptoms management as well as family counseling. High-quality communicational skills are fundamental for anesthesiologists and intensivists especially when interfacing with surrogate decision makers in the ICU or with patients in the preoperative setting while discussing goals of care. Coronavirus disease 2019 (COVID-19) pandemic has challenged many aspects of palliative care delivery: reduced family presence within the ICU, communication with families through phone calls or video calls, patient–physician relationship mediated by bulky personal protective equipment and healthcare workers physical and psychological distress due to the increased workload and limitations in resources are some of the most evident.ConclusionAnesthesiologists and intensivists are increasingly facing challenging clinical situations where principles and practice of palliative care have to be applied. In this sense, increasing knowledge on palliative care and providing specific training would allow to deliver high-quality symptom management, family counseling and end of life guidance in critical care settings. COVID-19 pandemic sets additional difficulties to palliative care delivery.

Decision-Making by Emergency Medicine Personnel in Prehospital Treatment of Patients Receiving Palliative Care: A Questionnaire, Comparative Cohort Study.

ObjectivePalliative care is an approach to improve quality of life in patients with life-limiting diseases. The sudden nature of such conditions involves emergency providers as the first responders, who have roles in delivering appropriate care to meet patients’ needs. In this study, we evaluated whether previous experience in palliative care among paramedic students could affect their decision-making skills in prehospital work.MethodsThis questionnaire-based prospective cross-sectional study was conducted from October 2019 to November 2020. We compared two groups of paramedic students in a tertiary hospital in Bangkok, Thailand. The class of 2019 did not attend palliative care courses and the class of 2020 completed a 2-week course regarding in-hospital palliative care services. Questionnaires including rating scales and checklists and involving cases with and without malignancy were completed via a web-based data collection form. The reliability of the questionnaire was tested. Decision-making skills were categorized into seven domains comprising life-sustaining treatment, withholding or withdrawing life-sustaining treatment, advance care planning, self-autonomy, decision-making capacity and surrogate decision-makers, prehospital dyspnea management, and communication skills.ResultsAmong 57 paramedics, 52 (91%) completed the questionnaire. There was no significant difference in decision-making between the two groups in all seven domains (p>0.050). Overall, participants more often recognized patients who were eligible for palliative care and made more decisions to withhold or withdraw life-sustaining treatment when patients had advanced malignancy than in cases of non-malignancy (100% and 84.6% respectively, p=0.006).ConclusionOur findings showed that the decision-making process for patients regarding prehospital palliative care was not significantly different between two groups of emergency personnel with and without in-hospital palliative care experience.

Hospital Guardianship: A Quality Needs Assessment of "Unbefriended" Patients Who Lack Decisional Capacity.

The "unbefriended" patient does not demonstrate capacity to make their own medical decisions, does not have an advance directive, and lacks a surrogate decision maker. For these patients without a designated health care proxy, hospitals may need to petition for public guardianship, a notoriously arduous process with undefined impact on hospital resources. The objective of this study was to describe the characteristics, system needs, and financial impact of unrepresented inpatients in an academic, tertiary care, urban medical center. The Northwestern Memorial Hospital Quality and Patient Safety Committee approved a systematic needs assessment. Retrospective chart review was conducted for patients admitted from September 1, 2013 to August 31, 2019 for whom the hospital petitioned for a public guardian. From fiscal years 2014 to 2019, 156 patients were petitioned for public guardianship. The number of cases rose sequentially from 8 in 2014 to 44 in 2019. The 2 most common conditions that impaired capacity were neurocognitive disorders (56.4%) and psychotic disorders (17.9%). The psychiatry consultation service consulted 71.2% of cases vs 71.1%. There were 2347 medically unnecessary hospital days related to the pursuit of guardianship, and the associated costs to the health system were estimated to be more than $5.8 million. The number of unbefriended patients who lacked decisional capacity necessitating public guardianship dramatically escalated over 5 years. These patients had high rates of homelessness and psychiatric illness, consistent with previous research. Further investigation is needed to understand and address the needs of this vulnerable population.

Response to “Public attitude to imminent death donation”

Mr. Akoh1 , thank you kindly for the review and response to our Survey of Public Attitudes Towards Imminent Death Donation (IDD) in the United States.2 With this manuscript, we had one opportunity to ask a controversial question. The purpose was not to cover all the scenarios but rather the most crucial one before proceeding-should surrogate decisions be made that allow a course of action that would not directly benefit the patient and can potentially cause harm? Over 70% of our 2,644 survey respondents would themselves donate or agree to donate on behalf of an incapacitated family member if in a situation like Jason's.

Does Caregiver Participation in Advance Care Planning Using a Decision Support Tool Together With Patients Reduce Caregiver Strain, Burden and Anxiety Over Time? A Post-Hoc Analysis of a Randomized Controlled Trial.

Surrogate decision makers experience significant amounts of anxiety, burden, and strain in their role as caregivers and decision makers for loved ones. To investigate longitudinally whether surrogate decision makers engaging in ACP together with their loved one reduces perceived anxiety, burden, and strain felt by surrogate decision makers. Post-hoc analysis of a randomized controlled trial evaluating caregivers' perceived self-efficacy to serve as surrogate decision makers. The trial employed a 2×2 study design of patient/caregiver dyads who engaged in advance care planning (ACP) using a standard living will form vs "Making Your Wishes Known" (MYWK), and having the patient engage in ACP alone vs together with the family caregiver. Surrogates completed validated survey instruments surveys longitudinally to compare levels of anxiety, burden, and strain. 246 of 285 dyads completed the measures. No significant reductions in anxiety, burden, or strain were found longitudinally in surrogate decision makers using MYWK together with loved one's vs other control groups. Increases in strain and anxiety were seen across all study groups and increases in burden across 2/4 study groups. Strain and burden increased most in the MYWK Together arm (▴ = +2.22 and ▴ = +1.91 respectively). Family caregivers who engaged in ACP together with patients using the decision support tool MYWK did not experience less strain, burden, or anxiety longitudinally compared to other study arms. These results may help inform the design of future studies and interventions that promote caregivers' involvement in ACP interventions.

Clinician Ethical Perspectives on Extracorporeal Membrane Oxygenation in Practice.

Extracorporeal membrane oxygenation (ECMO) is an expensive and scarce life sustaining treatment provided to certain critically ill patients. Little is known about the informed consent process for ECMO or clinician viewpoints on ethical complexities related to ECMO in practice. We sent a cross-sectional survey to all departments providing ECMO within 7 United States hospitals in January 2021. One clinician from each department completed the 42-item survey representing their department. Fourteen departments within 7 hospitals responded (response rate 78%, N = 14/18). The mean time spent consenting patients or surrogate decision-makers for ECMO varied, from 7.5 minutes (95% CI 5-10) for unstable patients to 20 minutes (95% CI 15-30) for stable patients (p = 0.0001). Few clinician respondents (29%) report patients or surrogate decision-makers always possess informed consent for ECMO. Most departments (92%) have absolute exclusion criteria for ECMO such as older age (43%, cutoffs ranging from 60-75 years), active malignancy (36%), and elevated body mass index (29%). A significant minority of departments (29%) do not always offer the option to withdraw ECMO to patients or surrogate decision-makers. For patients who cannot be liberated from ECMO and are ineligible for heart or lung transplant, 36% of departments would recommend the patient be removed from ECMO and 64% would continue ECMO support. Adequate informed consent for ECMO is a major ethical challenge, and the content of these discussions varies. Use of categorical exclusion criteria and withdrawal of ECMO if a patient cannot be liberated from it differ among departments and institutions.

Patient selection and preoperative evaluation of percutaneous dilation tracheostomy in the intensive care unit.

Percutaneous dilation tracheostomy (PDT) is increasingly performed at the bedside of critically ill patients in the intensive care unit (ICU). PDT is safe overall and has a number of benefits compared to surgical tracheostomy. A tracheostomy tube has numerous advantages compared to an endotracheal tube, including decreased work of breathing, ease of connecting to a mechanical ventilator, improved patient comfort and pulmonary hygiene. Common patient populations include those unable to wean from mechanical ventilation, those requiring enhanced pulmonary hygiene, and those with progressive neuromuscular weakness. Clinicians performing this procedure should be familiar with common indications for performing tracheostomy as well as absolute and relative contraindications. Special patient populations, including those with morbid obesity, aberrant anatomic and vascular anatomy, cervical spine injury, and high ventilatory requirements, should be approached with careful planning. Pre-procedure evaluation for coagulopathy, including basic laboratory analysis and medication review, should be undertaken. Pre-procedure ultrasound may be used to more accurately identify landmarks and vascular structures. The optimal timing for performing PDT is unknown and depends on the unique characteristics of each patient, perceived natural history of the disease process being addressed and open conversations with the patient or surrogate decision maker. In this review, we identify patient populations most likely to benefit from PDT and outline data behind optimal timing, pre-procedural laboratory evaluation and patient specific factors that may influence procedural success.

Organ donation: A treatment option in end-of life intensive care?

A newly issued policy statement of the German Medical Association considers organ donation as an integral part of end-of-life intensive care in patients with devastating brain afflictions. Hence, patients' wishes towards organ donation and medical suitability should be evaluated when prognosis is considered futile and goals of treatment need to be reconsidered. Continuation of intensive care treatment towards the (mandatory) diagnosis of "brain death" and subsequently towards organ donation has to be legitimatized by patients' explicit wishes (organ donor card, advanced directive) or by surrogate decisions makers. Intensive care facilitating organ donation should be goal-directed and follow established guidelines. Thus, a potential recovery of transplantable organs is supported by appropriate intensive care treatment. Decisions to employ extended intensive care options (like extracorporeal circulatory support or cardiopulmonary resuscitation) in potential organ donors should be carefully outbalanced with patients' wishes, organ donation being considered an achievable goal and even potential frictions in medical teams.

Defining Familial Interactions and Networks: An Exploratory Qualitative Study on Family Networks and Surrogate Decision-Making.

Prospective qualitative cross-sectional study. Two ICUs in a quaternary referral center in the eastern United States. Convenience sample of patients admitted to the ICU and their family members. None. Twenty-six patient-family-clinician units were interviewed. Men were three times more likely than women to have a legally appointed decision-maker that matched their preferred decision-maker as expressed in the interview. Patients who were married or in a long-term relationship were the most consistent group of respondents, with 94% of them selecting their spouse or partner as the preferred decision-maker. The most common reasons for selecting a surrogate decision-maker were intangible themes such as feeling "known" by that person rather than having prior discussions about specific wishes or advance directives. Asking about a patient's familial network and qualities they value in a surrogate decision-maker may aid ICU teams in honoring patients' wishes for surrogate decision-making. This may be an important supplement to accepted legal hierarchies for proxy decision-makers and advance directive documents. Further studies with larger sample sizes could be used to shed light on the nuances of familial and relationship networks of a more diverse population of respondents.

Development and effectiveness of advance care planning protocol for heart failure outpatients

Abstract Funding Acknowledgements Type of funding sources: None. Background/Introduction Heart failure has a poor prognosis, and the number of patients continues to increase. Moreover, since it is a disease that causes various sufferings, substantial end-of-life care is needed. Advanced care planning (ACP) is a part of end-of-life care for patients with heart failure. ACP provides patient decision-making opportunities, documenting end-of-life preferences, and increasing end-of-life conversation. However, the ACP intervention for patients with heart failure is not integrated, and studies are insufficient. In addition, Japan follows a non-Western culture, in which participation in the medical decision-making is reluctant and considered to be less prepared for ACP. Clarifying the effects of systematic ACP on patients with heart failure in Japan can be used to determine effective interventions in Japan and may provide effective ACP intervention for patients who have no preparedness worldwide. Purpose This study aimed to identify the effect of protocol-based intervention on the outcomes of ACP in Japanese outpatients with heart failure. Methods This is a single-center retrospective observational study. Data on patient attributes, conversation records, and document information from medical records of patients who have undergone intervention using the predeveloped ACP protocol were collected. Numerical data were statistically analyzed. ACP results were evaluated by performing deductive content analysis on the basis of existing frameworks. A subgroup analysis was performed on differences in ACP outcomes based on patient attributes. Results Data were collected from 13 patients who underwent ACP intervention. The median age was 69 years. Moreover, 76% were male, 84% were married, 76% were living with family, and 46% were receiving home-visit nursing care. New York Heart Association functional classification II was the most common in the severity classification of heart failure, and ischemic cardiomyopathy was the most common etiology. Documenting patient’s wishes, recording patient’s wishes in medical record, and identifying what brings value to patient"s life were achieved in 76% of the participants. Deciding surrogate decision makers, discussing values and care preferences with the surrogate, and discussing values and care preferences with health care professionals were achieved in 69% of the participants. Differences in patient attributes, such as age and presence or absence of home-visit nursing, did not affect ACP outcomes. Conclusion Protocol-based ACP allows patients with heart failure to determine surrogate decision makers and discuss care preferences with healthcare professionals, identify what they value, and record their wishes. The protocol-based ACP had a positive impact on ACP outcomes, without being restricted by patient attributes.

Advance Care Planning and Goals of Care Discussions in Advanced Liver Disease.

Advance care planning (ACP) has been shown to improve multiple outcomes in patients with serious illnesses; however, patients with advanced liver disease, or cirrhosis, rarely receive timely ACP. The purpose of this review is to evaluate the current state of ACP for patients with advanced liver disease and to provide practical guidance for integrating early ACP into routine outpatient hepatology care. Due to multiple patient-, physician-, and systems-level barriers, patients with advanced liver disease have low rates of timely ACP engagement. Early identification and preparation of a surrogate decision-maker, enhancing clinician ACP communication skills, use of patient-centered educational tools, optimizing outpatient processes for ACP documentation, and early referral to specialty palliative care may help to improve current deficits in ACP for this population. Provision of early ACP to patients with advanced liver disease may better ensure that patients receive medical care that is consistent with their goals and values.

Family experiences with non-therapeutic research on dying patients in the intensive care unit

Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well...

Algorithmic prognostication in critical care: a promising but unproven technology for supporting difficult decisions.

Patients, surrogate decision makers, and clinicians face weighty and urgent decisions under uncertainty in the ICU, which could be aided by risk prediction. Although emerging artificial intelligence/machine learning (AI/ML) algorithms could reduce uncertainty surrounding these life and death decisions, certain criteria must be met to ensure their bedside value. Although ICU severity of illness scores have existed for decades, these tools have not been shown to predict well or to improve outcomes for individual patients. Novel AI/ML tools offer the promise of personalized ICU care but remain untested in clinical trials. Ensuring that these predictive models account for heterogeneity in patient characteristics and treatments, are not only specific to a clinical action but also consider the longitudinal course of critical illness, and address patient-centered outcomes related to equity, transparency, and shared decision-making will increase the likelihood that these tools improve outcomes. Improved clarity around standards and contributions from institutions and critical care departments will be essential. Improved ICU prognostication, enabled by advanced ML/AI methods, offer a promising approach to inform difficult and urgent decisions under uncertainty. However, critical knowledge gaps around performance, equity, safety, and effectiveness must be filled and prospective, randomized testing of predictive interventions are still needed.

Analyzing the paradigmatic cases of two persons with a disorder of consciousness: reflections on the legal and ethical perspectives

BackgroundMedia have increasingly reported on the difficulties associated with end-of-life decision-making in patients with Disorders of Consciousness (DOC), contextualizing such dilemma in detailed accounts of the patient’s life. Two of the first stories debated in the scientific community were those related to the cases of two women, one American, the other Italian, who captured attention of millions of people in the first years of this third millennium.MethodsMuch has been written about the challenges of surrogate decision-making for patients in DOC, but less has been written comparing these challenges across legal systems and cultures. In our paper, we propose a systematic analysis of the final legal documents written by the American and Italian Courts in relation to the two cases, developing our discussion around three areas: the level of certainty/reliability of diagnosis and prognosis, the reconstruction of self-expression, time of illness and time of care. They are examples of the typical issues discussed by legal authors and allow us to understand the link and the difference between the legal and ethical perspectives.ResultsThe legal approach to the two cases has some common elements: the need to be certain about the diagnosis and prognosis and the fact that the clinical criteria are necessary in determining the most appropriate treatments, although these criteria are not sufficient unless they are supplemented by the patient’s will. The issue of relations takes on importance both from a legal and an ethical point of view, but from two different perspectives. While ethics safeguards relationships by guaranteeing their differences and makes them reconcilable, law safeguards relationships by guaranteeing the cold forms of respect, equality, impartiality, symmetry, reciprocity, and irreversibility. In this perspective, the link between the time of care and the decision of the family members assumes importance.ConclusionsThe most interesting point that emerges from our analysis is the issue of relationships and how they affect decisions, both from a legal and ethical point of view. For this reason, during the patients’ hospitalization, it is necessary to identify ways in which they might give their opinion about the moral issues underlying their choices.

Development and preliminary evaluation of EMPOWER for surrogate decision-makers of critically ill patients.

The objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates' mental health and patient outcomes. Part 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15-20 min modules, totaling 1.5-2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments. Part 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = -0.41), peritraumatic distress (d = -0.24), and experiential avoidance (d = -0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = -0.94), depression (d = -0.23), anxiety (d = -0.29), and experiential avoidance (d = -0.30). Preliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.

Baseline Knowledge Attitudes Satisfaction and Aspirations With Advance Care Planning: A Cross-Sectional Study.

Studies have consistently demonstrated low rates of adoption of Advance Care Planning in the community. We studied Medicare enrollees age 65 and over and non-Medicare patients using a cross-sectional survey undertaken in February and March 2019 using questionnaires completed by out-patients attending a teaching hospital clinic in East Tennessee USA. We evaluated patient knowledge, attitudes, satisfaction and aspirations towards Advance Care Planning. 141 properly completed questionnaires were used. All Medicare enrollees were aware of Advanced Care Planning compared to 43% in the non-Medicare group. 70% of the Medicare enrollees and 94% of non-Medicare group were not ready to complete a written Advanced Care Plan. Of the respondents, 46% had appointed spouses, 24% adult children, 11% siblings, 10% parents, 3.6% friends and 1.2% aunts as their surrogate medical decision makers. 41% agreed that they were satisfied with their current advance care planning arrangements. This research identified that individual's knowledge, attitudes and aspirations influenced the adoption of Advance Care. Patients have adopted the Advance Care Plan concept but have modified it to reduce their concerns by using family and loved ones to convey their wishes instead of filling the required legal documents. Clinicians could improve this informal system and increase the observability of the treatment choices including the use of video and web-based tools.

‘Surrogate decision-making’ in India for women competent to consent and choose during childbirth

abstract In a postcolonial, deeply patriarchal culture, decisions are often made for Indian women about every aspect of their life – beginning with whether they will be allowed to be born. This is followed by every life decision, including education and marriage. A ‘surrogate decision-maker’ is a guardian who decides for an adult incapable of making their own decisions due to a mental health condition, or as a substitute based on a patient’s stated or predicted wishes. However, the majority of Indian women are ‘controlled’ and ‘allowed’ or otherwise regarding everything. No choice in women’s life is women’s own, including decisions about deeply personal experiences such as giving birth. Our article is embedded in feminist epistemology and uses voice-centred relational analysis of interviews with four women from impoverished backgrounds in Bihar, India, to explore decision making around childbirth and throughout their lives. The surrogate decision-makers in the birth environment are: 1) healthcare and non-healthcare providers, and/or 2) family members (who play the dominant role in every other decision about women’s lives). They communicate amongst themselves about a woman’s active bodily experience. Through I-poems we present women’s varied levels of resistance and non-resistance to obstetric violence, which can be looked at as an extension of their response to violence in their routine lives. We find similarities in women’s conditioning to endure, and argue that women should be the key stakeholders of their decisions about themselves and their bodies, which includes decisions about birth.