Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?
Child; Humans; retrospective studies; Intensive Care Units; Terminal Care; Medical Futility; Withholding Treatment; Professional-Family Relations; Culture; Conflict (Psychology); Religion and Psychology; Pediatric
Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of 'miraculous' intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a 'miracle' would happen.
2013-09
Brierley J; Linthicum J; Petros A
Journal Of Medical Ethics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100104" target="_blank" rel="noreferrer">10.1136/medethics-2011-100104</a>
International comparison study on the primary concerns of terminally ill cancer patients in short-term life review interviews among Japanese, Koreans, and Americans
Female; Humans; Male; United States; Aged; Middle Aged; Cross-Cultural Comparison; Life Change Events; Hospices; Spirituality; Religion and Psychology; Psychometrics; Japan; 80 and over; Psychological; Personality Inventory/statistics & numerical data; Republic of Korea; Interview; Terminal Care/psychology; Mental Recall; Neoplasms/ethnology/psychology; Social Values/ethnology
OBJECTIVE: The aim of this study was to investigate the primary concerns of terminally ill cancer patients in a Short-Term Life Review among Japanese, Koreans, and Americans to develop intervention programs to be tailored to patients in other countries. METHOD: Twenty Japanese, 16 Korean, and 7 American terminally ill cancer patients who were in the hospice wards of general Christian hospitals in each country participated in this study. Medical staff members (nurses, social workers, clinical psychologists) performed Short-Term Life Review Interviews with each patient. Patients reviewed their lives in the first session, the interviewers made simple albums for each patient in the week following the first session, and patients and interviewers then confirmed the contents of the album. The treatment period was 1 week. Measurement instruments included the Functional Assessment Chronic Illness Therapy-Spiritual (FACIT-Sp) and the Hospital Anxiety and Depression Scale (HADS). The contents of each interview session were transcribed, and correspondence analysis and a significance test were conducted on these data to select characteristic words or phrases. RESULTS: Using the FACIT-Sp scores, the following concerns were chosen, in descending order of frequency. In Japan, primary concerns consisted of such ideas as "good human relationships and transcendence," "achievements and satisfaction," "good memories and important things," and "bitter memories." In Korea, "religious life," "right behavior for living," "strong consideration for children and will," and "life for living" were primary concerns. In the United States, "love, pride, will to children," "good, sweet memories," and "regret and a feeling of loss" were primary concerns. SIGNIFICANCE OF RESULTS: We clarify the differences among the primary concerns from the Short-Term Life Reviews, arguing that we can improve the spiritual well-being of terminally ill cancer patients by focusing on the primary concerns within each country.
2009
Ando M; Morita T; Ahn SH; Marquez-Wong F; Ide S
Palliative & Supportive Care
2009
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Journal Article
<a href="http://doi.org/10.1017/S1478951509990289" target="_blank" rel="noreferrer">10.1017/S1478951509990289</a>
Coping: pitfalls and promise
Humans; Affect; Religion and Psychology; Terminology as Topic; Adaptation; Psychological; Informal; Social Control
Coping, defined as the thoughts and behaviors used to manage the internal and external demands of situations that are appraised as stressful, has been a focus of research in the social sciences for more than three decades. The dramatic proliferation of coping research has spawned healthy debate and criticism and offered insight into the question of why some individuals fare better than others do when encountering stress in their lives. We briefly review the history of contemporary coping research with adults. We discuss three primary challenges for coping researchers (measurement, nomenclature, and effectiveness), and highlight recent developments in coping theory and research that hold promise for the field, including previously unaddressed aspects of coping, new measurement approaches, and focus on positive affective outcomes.
2004
Folkman S; Moskowitz JT
Annual Review Of Psychology
2004
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Journal Article
<a href="http://doi.org/10.1146/annurev.psych.55.090902.141456" target="_blank" rel="noreferrer">10.1146/annurev.psych.55.090902.141456</a>
Addressing spirituality in pediatric hospice and palliative care
Child; Adult; Religion and Medicine; Needs Assessment; Religion and Psychology; Nursing Assessment; Family/psychology; Human; Child Psychology; Holistic Health; Practice Guidelines; Spirituality; Palliative Care/methods/psychology/standards; Pastoral Care/methods/standards; Pediatrics/methods
Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable attention has been directed to spiritual issues for adult patients in hospice and palliative care, spirituality in pediatric palliative care has been virtually neglected. The need for guidelines to assess spirituality in this population was identified as a priority issue by members of a subcommittee of the Children's International Project on Children's Palliative/Hospice Services, created under the auspices of the National Hospice Organization. Committee members, based on their clinical, research, and personal experiences, identified several aspects relevant to spirituality in general, and to spirituality in pediatric palliative care in particular, and developed guidelines for clinicians in pediatric palliative care. The purpose of this paper is to share the results of this committee's work and, in particular, to present their guidelines for addressing spiritual issues in children and families in pediatric hospice and palliative care.
2002
Davies B; Brenner P; Orloff S; Sumner L; Worden W
Journal Of Palliative Care
2002
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Journal Article
Spiritual aspects of loss at the time of a partner's death from AIDS
Humans; Male; Grief; Cohort Studies; Interviews as Topic; Longitudinal Studies; Religion and Psychology; Acquired Immunodeficiency Syndrome; Caregivers/psychology; Homosexuality; Male/psychology; San Francisco
Spiritual phenomena were spontaneously reported in interviews of 68 of 125 recently bereaved HIV-positive and HIV-negative partners of men who died from AIDS. Spiritual schemas involving beliefs, experiences, rituals, social support, and roles were used to help assimilate the fact of death and were appraised as sources of solace and meaning. The relationship between spirituality and coping, mood, and physical health was examined. Those reporting spiritual phenomena showed higher levels of depression and anxiety and lower levels of positive states of mind, used more adaptive coping strategies, and reported more physical health symptoms than those who did not report spiritual phenomena.
1997
Richards TA; Folkman S
Death Studies
1997
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Journal Article
<a href="http://doi.org/10.1080/074811897201769" target="_blank" rel="noreferrer">10.1080/074811897201769</a>
Spiritual aspects of loss among partners of men with AIDS: postbereavement follow-up
Humans; Male; United States; Cohort Studies; Follow-Up Studies; Religion and Psychology; Adaptation; Psychological; bereavement; Caregivers/psychology; Acquired Immunodeficiency Syndrome/psychology; Homosexuality; Male/psychology; San Francisco
This article is a follow-up study of bereaved caregiving male partners of men with AIDS (T.A. Richards & S. Folkman, 1997). The earlier study examined spiritual beliefs, experiences, and practices reported in interviews with 125 caregivers conducted 2 and 4 weeks following bereavement. This follow-up study reports qualitative and quantitative data from 70 members of the earlier cohort, collected 3 to 4 years later, regarding the presence of spiritual phenomena. Spirituality increased or deepened in 77% of the entire cohort. An ongoing relationship with the deceased partner was reported by 70% of the cohort. The use of spirituality as coping appeared to decline as the bereaved moved further in time from the loss. Instead, spirituality was identified as a personal governing influence that provided value and direction to the individual. In general, relationships between the expression of spirituality and mood, coping, and physical health symptoms were not statistically significant owing to small samples, but there were medium effect sizes.
1999
Richards TA; Acree M; Folkman S
Death Studies
1999
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Journal Article
<a href="http://doi.org/10.1080/074811899201109" target="_blank" rel="noreferrer">10.1080/074811899201109</a>
Adolescent sibling bereavement as a catalyst for spiritual development: a model for understanding.
Female; Humans; Male; Adolescent Psychology; Spirituality; Religion and Psychology; Sibling Relations; adolescent; Psychological; bereavement; Models; sibling bereavement; Interview; T
While our understanding of adolescent bereavement has greatly expanded in recent years, one area yet to be clarified is the relationship between grief following a significant loss and spirituality. This article strengthens our understanding of this connection in two ways. First, the authors present a conceptual model explaining how developmental changes in cognitive capacity during the adolescent life stage make it possible to challenge one's beliefs and search for new meaning. The crisis of experiencing the death of a sibling during this period has the potential, then, of serving as a catalyst for enhanced spirituality--defined as a quest for new meaning. Secondly, interviews with four adolescents following the death of a sibling add more detailed understanding of that quest for meaning. Quotations drawn from these interviews illustrate these young persons' shifting perspective of self, others, the sibling relationship, a higher power, death, and life.
1999-09
Batten M; Oltjenbruns KA
Death Studies
1999
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Journal Article