Surrogate Family Research Articles

Impact of Patients' Expressed Wishes on Their Surrogate Decision Makers' Preferred Decision-Making Roles in Japan.

Home medical care (HMC) patients and their families are expected to prepare for end-of-life decision making. We investigated the decision readiness of HMC patients and their family surrogates. Cross-sectional survey. We collected data from dyads, consisting of a HMC patient aged 65 years or older and a family member of the patient, recruited at four Japanese primary care clinics from January 2016 to November 2016. Surrogates completed a questionnaire on their sociodemographic and health status and their decision readiness. Primary HMC physicians provided information on their patients. A total of 337 dyads were screened, and 159 were included. The mean age of patients and surrogates was 86 and 64 years, respectively, and 29% of patients were cognitively impaired. Only 1.9% of the patients left written advance directives, and 32% were entrusting all decision making to the doctor or their families. Regarding the surrogate's preferred decision-making role, 21.9% of the surrogates preferred doctors to assume decision-making responsibility. A multivariate analysis revealed that no discussion of care goals (odds ratio [OR] 2.88, 95% confidence interval [CI] 1.02-8.17) and patients having expressed their wishes verbally, including entrusting decision making to others (OR 2.51, 95% CI 1.07-5.89), were associated with surrogates' preference for doctors to have decision-making responsibility. Many patients preferred to entrust the end-of-life decisions to others rather than utilizing advance directives, which made surrogates more dependent on doctors for decision making. Qualified advance care planning is required to promote familial discussion and surrogates' decision readiness.

The Role of Advocacy in children's palliative care

‘Role of advocacy in Irish Children’s Palliative Care. What would parents of children with life limiting conditions like?’ Introduction: This presentation will highlight the role of advocacy in children’s palliative care (CPC) and share findings from an Irish small scale parent survey. Recent Irish prevalence figures of 3,840 life-limited children in Ireland published by Ling, O’Reilly, Balfe, Quinn and Devins Oct (2015), infer there must be a need for the role of formal CPC family advocacy within this growing population. The literature helped to inform the design of a survey to identify if Irish parents wish for both formal and informal independent advocacy services in children’s palliative care. The definition of advocacy within CPC is ‘Promoting the concept that care of babies, children and young people who are life-limited should include services, therapies and medicines that will reduce pain and suffering and encompass all their physical, social, emotional and spiritual development needs and that of their families, allowing for the best quality of care.’ (ICPN? date) Research Aims: Previous literature on advocacy (O’Connor & Gwyther 2014 and Shockney 2010), focused mainly on the nurse as the primary advocate for terminally ill children. Yet Simms and Cole (2007), highlighted the role parents can play as advocates for their own children. The Omega Journal of Death and Dying (2015) noted qualitative studies with mothers of severely ill children and how parents became informed and helped others to advocate for their children. Meeker (2004) explored the use of a family surrogate (someone to objectively make decisions/speak for the family) in decision making and Schafer (2006) took the perspective of patient autonomy and family-based decision making. Martin (2013) stresses the advocacy barriers and missed opportunities in the delivery of palliative care and Seal (2007) explains the role of patient advocacy in Advance Care Planning. Also, Turner (2010) and Whitty Rodgers et al (2009) highlight ethical dilemmas in relation to advocacy of a child’s best interests when in conflict to parental preference. This presentation presents the findings from a small scale exploratory survey conducted with parents to explore the requirements for formalised and informal advocacy services for children with LLC and their families. Study Design: A randomised sample of 10 parent respondents who had children with LLC. The data was analysed thematically. Ethical approval was not required as the survey was exempt under service evaluation/ improvement criteria. Statements utilised within this evaluation included for example: ‘I feel listened to about my child’s care needs’. ‘I feel very informed about palliative care. I feel equipped to promote all necessary care and services for my child’. Scale of ‘Fully Agree –Fully Disagree’. Results: Results demonstrate the appetite for advocacy in this field and how the views of parents and families warrant the future design of informal and formal advocacy services within Irish children’s palliative care.

In Memoriam: Gerhard Levy, PharmD

In Memoriam: Gerhard Levy, PharmD

Predictors of advance directives among nursing home residents with dementia.

Our cross-sectional study analyzed a convenience sample of 143 nursing home dyads comprised of residents with dementia and family surrogates. Documentation of residents' advance directives, physical and cognitive status was obtained from medical charts. Surrogates completed the stress of end-of-life care decision scale and a questionnaire regarding their demographic characteristics. Nursing home characteristics were obtained from each chief administrator. Less than half of the nursing home residents (39.2%) had advance directives and most (96.4%) had been completed by family surrogates. The following were predictors of an advance directive: surrogates had previously signed a do-not-resuscitate as a proxy and had been informed of advance directives by a healthcare provider; nursing homes had policies for advance directives and a religious affiliation. Advance directives were uncommon for nursing home residents with dementia. Presence of an advance directive was associated with surrogate characteristics and the nursing home facilities; there was no association with characteristics of the nursing home resident. Our findings emphasize the need to develop policies and strategies, which ensure that all residents of nursing homes and their surrogates are aware of their right to an advance directive.

Blood donation practice and its associated factors among health professionals of University of Gondar Hospital, Northwest Ethiopia: a cross sectional study

BackgroundBlood donation has remained a challenge in developing countries, like Ethiopia. In Ethiopia there is a high reliance on family surrogate and waged blood donors which carries an attendant increased risk of transfusion transmissible infection. Health workers are expected to practice blood donation so as to create a good image to the public. A study on blood donation behavior may improve successful implementation of the blood donation programs.MethodsAn institution based cross-sectional study was deployed from January to June 2015. An aggregate of 427 health workers were included in the study by using simple random sampling technique. Data were collected by using pre tested and structured questionnaire via self-administrated method. Descriptive and summary statistics were employed. Bivariate and multiple logistic regressions were computed. Odds ratios and their 95% confidence intervals were calculated to determine the level of significance.ResultsA total of 427 participants were included in the final analysis (response rate = 100%). Among these participants, 33.2% of them practice blood donation. Age above 25 years [AOR = 1.8 (95% CI 1.1, 3.0)], health professionals’ knowledge of blood donation [AOR = 1.9 (95% CI 1.1, 3.1)], health professionals’ attitude towards blood donation [AOR = 3.0, 95% CI 1. 8, 4.9)], and the presence of family members or relatives who received blood [AOR = 5.4, 95% CI 3.7, 8.7)] were significantly and independently associated with blood donation behavior of health professionals.ConclusionsBlood donation practice of health professionals in this study was found to be low as compared to other studies conducted in developing countries. Health professionals’ knowledge, attitude, age and the presence of family members or relatives who received blood before were independently associated with blood donation practice. Thus, awareness has to be created for health professionals to improve blood donation practices.

Factors Associated With the Do-Not-Resuscitate Decision Among Surrogates of Elderly Residents at a Nursing Home in Taiwan

Summary Background Do-not-resuscitate (DNR) in nursing homes is an emerging advance directive in Taiwan, but little research has been conducted. The purpose was to determine the factors associated with signing a DNR directive in the largest hospital affiliated nursing home in Taiwan. Methods A cross-sectional survey was conducted using a convenience sample from a nursing home in northern Taiwan between January 2011 and January 2012. The demographic characteristics of elderly residents were collected. 213 family surrogates of elderly residents were interviewed using a self-developed structured questionnaire related to DNR issues. The data were analyzed via descriptive statistics and logistic regression analysis. Results Only 24/213 (11.3%) of elderly residents had the DNR directives. Of these, 20/24 (83%) were made by family surrogates. The factors significantly associated with the DNR decision included the elderly residents had severe brain injury (OR: 8.83, p = 0.023), pulmonary disease (OR: 7.24, p = 0.004), cancer (OR: 5.20, p = 0.045); the family surrogates believe in Buddhism (OR: 8.02, p = 0.030), and ever having discussed DNR with the resident (OR: 19.23, p Conclusions The findings indicated the DNR decision was associated with residents' conditions and surrogates' factors. These information are helpful to medical personnel in nursing homes to better understand and to assist the DNR decision-making process.

Relationship of ICU Family Expectations and Treatment Evaluation on Values (S726)

•Describe the relationship between family outcome expectations, evaluation of treatment effectiveness, and identification of what is most important to ICU families (length of life versus quality of life).•Evaluate approaches to early identification of family values through brief, explicit discussions. Family decision makers for the critically ill vary in what is most important, with some focusing entirely on the goal of survival and some on future quality of life. Decisions about aggressiveness of interventions often reflect these implicit values. To examine the extent to which values are influenced by outcome expectations and evaluation of treatment effectiveness. 264 family surrogates of patients with >3 day stay in the ICU were interviewed every 5 days until patient death or discharge. At each time they were asked to identify, in making decisions, what is most important, how well the treatment was working, and expectations for future survival, functional status, and cognition. The majority of family surrogates were female (76.5%), Caucasian (66.7%), and either a spouse (40.5%) or adult child (31.4%) of the patient. Patients had an average ICU LOS of 14 days, hospital LOS of 22.4 days, in-hospital mortality of 27.3%, and 3 month cumulative mortality of 52%. Expectations for the best possible outcomes all decreased over time, being highest at Time 1 (5 days) and lowest at Time 3 (15 days). Evaluation of how well the treatment was working decreased significantly from T1 to T2 (p<.000) and from T2 to T3 (p<.005). However, identification of what was most important in the care of the patient (quality of life versus length of life) did not change over time and the means (100 mm scale) remained between 54.7 – 52.7 (SD 35.2-37.8). Families demonstrated awareness of the significance of prolonged need for critical care, with gradual lowering of expectations. However, these perceptions did not influence the values that direct decisions about goals of care, which may delay consideration of hospice even in the face of deteriorating patient condition.

A Qualitative Analysis of Family Surrogate Decision Making in Chronic Critical Illness (S729)

A Qualitative Analysis of Family Surrogate Decision Making in Chronic Critical Illness (S729)

Daughter of the Burning City by Amanda Foody

Reviewed by: Daughter of the Burning City by Amanda Foody Kate Quealy-Gainer, Assistant Editor Foody, Amanda Daughter of the Burning City. Harlequin Teen, 2017[384p] ISBN 978-0-373-21243-9 $19.99 Reviewed from galleys R Gr. 8–12 In the traveling city of Gomorrah, a carnival of entertainment and debauchery, sixteen-year-old Sorina has the best freak show around; her performers—a spineless acrobat, a giant treeman, a fire-breathing baby, etc.—are illusions, creations of her mind that she has magicked into solid form. They’re also her surrogate family, which is why she is devastated when one of them is found murdered; she wonders too how the killer went about ending the life of a being that technically didn’t have one and if more death lies ahead. Her search for the murderer leads her into Gomorrah’s dark corners (and there are plenty) and the city’s bizarre connection to the political rivalries of surrounding kingdoms. Gomorrah makes for a fantastic, magical setting, a seedy mix of titillation and sin that somehow makes a home for Sorina, even as she’s occasionally bewildered by its more nefarious revelries. The pace here is impeccable, as the tension rises with the body count and Sorina faces increasingly dangerous obstacles as she gets closer to the truth. The truth is a doozy; even if readers spotted the culprit early on, they’ll be shocked by the killer’s accompanying revelation and what it means for Sorina’s relationships to her illusions. Readers who enjoyed their whirl in Garber’s Caraval (BCCB 1/17) will want to get in line for entry to Gomorrah. Copyright © 2017 The Board of Trustees of the University of Illinois

Surrogate Fathers and Sons: Aleksandr Volkov's Historical Fiction for Children

Surrogate Fathers and Sons:Aleksandr Volkov's Historical Fiction for Children Erika Haber (bio) The life of a tyrant is a misfortune for humanity, but his history is always useful, both for the sovereigns and for the peoples. —N. M. Karamzin, Istoriia gosudarstva Rossiiskogo Best known today for his 1939 Russian adaptation of The Wonderful Wizard of Oz and subsequent Magic Land series, A. M. Volkov (1891–1977)1 welcomed the Soviet establishment's call in the 1930s for new voices in children's writing and a greater emphasis on the production of works with a historical focus. A professor of mathematics in Moscow at the time, Volkov immediately threw himself into the research and writing of his most ambitious and mature works of historical fiction: Two Brothers (Dva brata), which focused on Peter the Great, and Architects (Zodchie), set in sixteenth-century Russia during the reign of Ivan the Terrible. Volkov intended both of these historical novels for adolescents, and he researched and wrote them over a long period, spending twenty-three years (1938–61) revising the first book and eight years (1946–54) working on the second. Architects came out immediately upon its completion in 1954, but Two Brothers, which was begun in 1938 and accepted for publication in 1941, did not appear in print until 1950; a second, significantly revised and expanded version was published in 1961.2 Since the creation of these novels coincided with some of the darker years of Stalinism, the traumas of the Second World War, and the required method of Socialist Realism, the timing of their composition and publication most certainly affected their content and style, but not in the ways one would expect given the specific demands and expectations for children's literature by the Communist Party leadership. By the mid-'30s Socialist Realism had become largely prescriptive, providing formulaic plots, pre-established settings, and, most importantly, standardized character types (Stites 67). Children's literature during these years [End Page 169] became more ideological and focused on the everyday experiences of children as part of the communist collective that was supposed to be bigger and more important than their individual lives (Dobrenko, "School Tale" 48). Although some writers, such as Volkov, found ways to work around these demands, this approach became highly charged and dangerous under Stalinism, when even the biggest names in children's writing faced persecution and worse.3 Instead of using the stock black-and-white Socialist Realist heroes, Volkov created a cast of psychologically well-developed and relatively complex characters who enjoyed especially interesting surrogate family relationships. Volkov's portrayal of family dynamics and the subsequent role models for children that he created in these two novels differ significantly from the established formats and previous models, making these novels an interesting and daring example of how one author managed to subtly subvert the formulas of Socialist Realism in such a way as to create genuinely educational and entertaining historical fiction rather than mere ideological tracts. Historical fiction proved a useful means for creating a handy genealogy for the Soviet state, for recasting history, and for promoting nationalism and patriotism during the war years. It flourished in Stalin's Soviet Union and became a critical genre for children as well.4 Children's historical novels were thought to be more effective teaching tools than straight history texts because they brought the history to life with their active plots and adventurous characters; furthermore, it was believed that they stimulated the imagination, which helped children to understand and to remember historical details (Davin 155). However, the official adoption of the Socialist Realist method in 1934 meant that all texts—including literary and historical ones—became vehicles for the furthering of the values and teachings of the Party. According to Katerina Clark and Evgeny Dobrenko, now "culture and Soviet power were finally hitched together" (139). Since the building of the communist state was a work in progress, would-be authors had to contend with the shifting nuances of ideology and symbolism over time. The method of Socialist Realism is not known for its aesthetic qualities, as Clark notes, but is better understood as parabolic, a way of providing instruction through example...

Nathaniel Branden's Oedipus Complex

Abstract In Judgment Day: My Years with Ayn Rand, Nathaniel Branden told the story of how he met Ayn Rand and became involved with her philosophy of Objectivism. But he also shared the story of his own life and the personal details of his romantic involvement with Ayn Rand. Applying an Oedipal interpretation to the life details that Branden provides, this article shows how Branden came to terms with his own developmental struggles by adopting a surrogate family in Ayn Rand and Frank O'Connor and ultimately found the family he needed in order to eventually break free and become his own person.

Complexity Analysis of Decision-Making in the Critically Ill.

Despite multiple trials of interventions to improve end-of-life care of the critically ill, there is a persistent lack of understanding of factors associated with barriers to decision-making at the end of life. To apply the principles of complexity science in examining the extent to which transitions to end-of-life care can be predicted by physician, family, or patient characteristics; outcome expectations; and the evaluation of treatment effectiveness. A descriptive, longitudinal study was conducted in 3 adult intensive care units (ICUs). Two hundred sixty-four family surrogates of patients lacking decisional capacity and the physicians caring for the patients were interviewed every 5 days until ICU discharge or patient death. Characteristics of patients, physicians, and family members; values and preferences of physicians and family; and evaluation of treatment effectiveness, expectations for patient outcomes, and relative priorities in treatment (comfort vs survival). The primary outcome, focus of care, was categorized as (1) maintaining a survival orientation (no treatment limitations), (2) transitioning to a stronger palliative focus (eg, some treatment limitations), or (3) transitioning to an explicit end-of-life, comfort-oriented care plan. Physician expectations for survival and future cognitive status were the only variables consistently and significantly related to the focus of care. Neither physician or family evaluations of treatment effectiveness nor what was most important to physicians or family members was influential. Lack of influence of family and physician views, in comparison to the consistent effect of survival probabilities, suggests barriers to incorporation of individual values in treatment decisions.

The Family Navigator: A Pilot Intervention to Support Intensive Care Unit Family Surrogates.

Communication problems between family surrogates and intensive care unit (ICU) clinicians have been documented, but few interventions are effective. Nurses have the potential to play an expanded role in ICU communication and decision making. To conduct a pilot randomized controlled trial of the family navigator (FN), a distinct nursing role to address family members' unmet communication needs early in an ICU stay. An interprofessional team developed the FN protocol. A randomized controlled pilot intervention trial of the FN was performed in a tertiary referral hospital's ICU to test the feasibility and acceptability of the intervention. The intervention addressed informational and emotional communication needs through daily contact by using structured clinical updates, emotional and informational support modules, family meeting support, and follow-up phone calls. Twenty-six surrogate/patient pairs (13 per study arm) were enrolled. Surrogates randomized to the intervention had contact with the FN on 90% or more of eligible patient days. All surrogates agreed that they would recom mend the FN to other families. Open-ended comments from both surrogates and clinicians were uniformly positive. Having a fully integrated nurse empowered to facilitate decision making is a feasible intervention in an ICU and is well-received by ICU families and staff. A larger randomized controlled trial is needed to demonstrate impact on important outcomes, such as surrogates' well-being and decision quality.

“Granny” au pairs in online French news media: a crueller shade of optimism?

This article examines the French media representation of low-cost live-in “granny” au pairing services available to French families in France and abroad. It argues that the French news broadcast media repackage “granny” au pairing as positive ageing while underplaying its status as work. The media not only gloss over the low (or no) payment these older single women receive, but also sidestep the precarious economic conditions which motivate them to undertake this work. Instead of portraying au pairs as underpaid workers, it promotes au pairing as “good-life fantasies” and au pairs as active agers. “Granny” au pairs are framed as glamorous, adventurous tourists, or as devoted super grannies. Following Lauren Berlant’s notion of “cruel optimism,” I argue that the media promote these fantasies despite the lack of evidence of reciprocity in the au pairs’ surrogate family relations and working arrangements. There is a sense of cruel optimism in the way these fantasies deny the reality of au pairing as work, assume that older citizens should find private solutions for inadequate pensions, and reinforce the idea that constant activity is what is required of older single women.

No Child Left in the Morgue: Standing in as Hope's Family.

This personal reflection expresses a chaplaincy department's feelings as they became the surrogate family for a child whose body was abandoned by its mother in the hospital morgue.

Hard is Normal: Military Families' Transitions Within the Process of Deployment.

US military deployments have become more frequent and lengthier in duration since 2003. Over half of US military members are married, and many also have children. The authors sought to understand the process of deployment from the perspective of the military family. After a thorough search of the literature, 21 primary research reports of 19 studies with an aggregate sample of 874 were analyzed using qualitative metasynthesis. The deployment process was experienced in four temporal domains. The military family as a whole shared the pre-deployment transition: all family members felt uncertain about the future, needed to complete tasks to "get ready" for deployment, and experienced a sense of distancing in preparation for the upcoming separation. The AD member went through the deployment transition independently, needing to "stay engaged" with the military mission, building a surrogate family and simultaneously trying to maintain connection with the family at home. In parallel, the home front family was going through a transposement transition, moving forward as an altered family unit, taking on new roles and responsibilities, and trying to simultaneously connect with the deployed member and find support from other military families. In post-deployment, the family went through the "reintegration" transition together, managing expectations, and readjusting family roles, all needing understanding and appreciation for their sacrifices during the recent separation. Effective family communication was important for military family well-being after deployment but unexpectedly challenging for many. Clinical, research, and policy recommendations are discussed.

Do-not-resuscitate orders and related factors among family surrogates of patients in the emergency department.

The purpose of this study was to investigate the prevalence of do-not-resuscitate (DNR) orders and to identify relevant factors influencing the DNR decision-making process by patients' surrogates in the emergency department (ED). A prospective, descriptive, and correlational research design was adopted. A total of 200 surrogates of cancer or non-cancer terminal patients, regardless of whether they signed a DNR order, were recruited as subjects after physicians of the emergency department explained the patient's conditions, advised on withholding medical treatment, and provided information on palliative care to all surrogates. Of the 200 surrogates, 23 % signed a DNR order for the patients. The demographic characteristics of patients and surrogates, the level of understanding of DNR orders, and factors of the DNR decision had no significant influence on the DNR decision. However, greater severity of disease (odds ratio (OR) = 1.38; 95 % confidence interval (CI) = 0.95-1.74), physician's initiative in discussing with the families (OR = 1.42; 95 % CI = 1.21-1.84), and longer length of hospital stay (OR = 1.06; 95 % CI = 1.03-1.08) were contributing factors affecting patient surrogates' DNR decisions. The findings of this study indicated that surrogates of patients who were more severe in disease condition, whose physicians initiated the discussion of palliative care, and who stayed longer in hospital were important factors affecting the surrogates' DNR decision-making. Therefore, early initiation of DNR discussions is suggested to improve end-of-life care.

The Family Sanctum: The Promise of Love’s Continuing Enlargement Across the Lifespan

Humanistic psychology acknowledges that spirituality is woven into the very fabric of human existence; however, this article furthers the position that the human striving for love and connection is the very definition of human spirituality. By suggesting that the original human intention to connect re-emerges in each subsequent developmental stage, merely reconfiguring to fit the requirements of current developmental tasks, it argues that the early family is an important arbiter of human spirituality across the lifespan. Finally, this article posits that the experience and expression of spirituality in older age reflects either an unbroken link to the original affectionate connection to (biological or surrogate) family members, or the intentional vitalization of weakly formed early family ties.

Tomboyism and Familial Belonging in Carson McCullers’s The Member of the Wedding : Queer Sentiments

This article brings queer-theoretical scholarship on the Southern Gothic into dialogue with the history of childhood and sentimental studies. Published in 1946, Carson McCullers’s The Member of the Wedding introduces readers to Frankie Addams, an awkward, unruly adolescent protagonist who resists the rigid gender and sexual norms of early twentieth-century Southern United States. While McCullers’s writing is often characterized as “Gothic” and “unsentimental,” this paper argues that her tomboy narrative invokes and revises the sentimental Bildungsroman of the mid-nineteenth century. Specifically, McCullers draws upon sentimental tropes of non-traditional families as she reimagines Frankie’s “family.” Like many sentimental child protagonists, Frankie endures the early fracturing of her nuclear family due to the death of her mother but forges a surrogate family with her African American housekeeper, Berenice Sadie Brown, and her cousin, John Henry West. Through her juxtaposition of queer children and non-normative families, McCullers critiques heteronormative institutions and rituals, meditates upon issues of membership in the body politic, and demonstrates how sentimentalism crystallizes persistently around the intersections of race, girlhood, and the family.

Tomboyism and Familial Belonging in Carson McCullers’s The Member of the Wedding: Queer Sentiments

This article brings queer-theoretical scholarship on the Southern Gothic into dialogue with the history of childhood and sentimental studies. Published in 1946, Carson McCullers’s The Member of the Wedding introduces readers to Frankie Addams, an awkward, unruly adolescent protagonist who resists the rigid gender and sexual norms of early twentieth-century Southern United States. While McCullers’s writing is often characterized as “Gothic” and “unsentimental,” this paper argues that her tomboy narrative invokes and revises the sentimental Bildungsroman of the mid-nineteenth century. Specifically, McCullers draws upon sentimental tropes of non-traditional families as she reimagines Frankie’s “family.” Like many sentimental child protagonists, Frankie endures the early fracturing of her nuclear family due to the death of her mother but forges a surrogate family with her African American housekeeper, Berenice Sadie Brown, and her cousin, John Henry West. Through her juxtaposition of queer children and non-normative families, McCullers critiques heteronormative institutions and rituals, meditates upon issues of membership in the body politic, and demonstrates how sentimentalism crystallizes persistently around the intersections of race, girlhood, and the family.