End of living: maintaining a lifeworld during terminal illness
Female; Humans; Male; Adult; Interviews as Topic; Questionnaires; Aged; Middle Aged; Attitude to Death; Terminally Ill/psychology; Neoplasms/psychology; Acquired Immunodeficiency Syndrome/psychology; San Francisco; New York City
The narrative responses of 32 people with AIDS or cancer with survival prognoses of 6 months to a year to monthly interview questions about their daily lives were analysed with a team-based qualitative methodology. Two groups emerged: (a) a Maintained Lifeworld Group characterised by one or more of the following: continued engagement with family, friends, and community; the ability to relinquish untenable goals and substitute new, realistic ones; engagement in spirituality and a spiritual practice; and, (b) a Lifeworld Interrupted Group characterised by one or more of the following: relocation just before or during the study, cognitive impairment, commitment to untenable goals, ongoing substance abuse. Understanding how people with a terminal illness can maintain a lifeworld and experience well-being while also managing the physical challenges of their illness could help inform the support offered by professional and family caregivers to improve care recipients' quality of life.
2009
Wrubel J; Acree M; Goodman S; Folkman S
Psychology & Health
2009
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/10.1080/08870440802320463" target="_blank" rel="noreferrer">10.1080/08870440802320463</a>
The economic and clinical impact of an inpatient palliative care consultation service: a multifaceted approach
Female; Humans; Male; Cohort Studies; Adult; Aged; Middle Aged; Length of Stay; Outcome Assessment (Health Care); Inpatients; Academic Medical Centers; 80 and over; Palliative Care/economics; San Francisco; Episode of Care; Referral and Consultation/economics/utilization
BACKGROUND: While there has been a rapid increase of inpatient palliative care (PC) programs, the financial and clinical benefits have not been well established. OBJECTIVE: Determine the effect of an inpatient PC consultation service on costs and clinical outcomes. DESIGN: Multifaceted study included: (1) interrupted time-series design utilizing mean daily costs preintervention and postintervention; (2) matched cohort analysis comparing PC to usual care patients; and (3) analysis of symptom control after consultation. SETTING: Large private, not-for-profit, academic medical center in San Francisco, California, 2004-2006. Subjects: Time series analysis included 282 PC patients; matched cohorts included 27 PC with 128 usual care patients; clinical outcome analysis of 48 PC patients. MAIN OUTCOME MEASURE(S): Mean daily patient costs and length of stay (LOS); pain, dyspnea, and secretions assessment scores. RESULTS: Mean daily costs were reduced 33% (p < 0.01) from preintervention to postintervention period. Mean length of stay (LOS) was reduced 30%. Mean daily costs for PC patients were 14.5% lower compared to usual care patients (p < 0.01). Pain, dyspnea, and secretions scores were reduced by 86%, 64%, and 87%, respectively. Over the study period, time to PC referral as well as overall ALOS were reduced by 50%. CONCLUSIONS: The large reduction in mean daily costs and LOS resulted in an estimated annual savings of $2.2 million in the study hospital. Our results extend the evidence base of financial and clinical benefits associated with inpatient PC programs. We recommend additional study of best practices for identifying patients and providing consultation services, in addition to progressive management support and reimbursement policy.
2007
Ciemins EL; Blum L; Nunley M; Lasher A; Newman JM
Journal Of Palliative Medicine
2007
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Journal Article
<a href="http://doi.org/10.1089/jpm.2007.0065" target="_blank" rel="noreferrer">10.1089/jpm.2007.0065</a>
The economic burden of home care for children with HIV and other chronic illnesses
Child; Female; Humans; Male; Interviews as Topic; California; Cost of Illness; Health Care Costs; Chronic Disease/economics; disabled children; San Francisco; New York City; Home Care Services/economics; Caregivers/economics; HIV Infections/economics/nursing; Home Nursing/economics
OBJECTIVES: We compared types, amounts, and costs of home care for children with HIV and chronic illnesses, controlling for the basic care needs of healthy children to determine the economic burden of caring for and home care of chronically ill children. METHODS: Caregivers of 97 HIV-positive children, 101 children with a chronic illness, and 102 healthy children were surveyed regarding amounts of paid and unpaid care provided. Caregiving value was determined according to national hourly earnings and a market replacement method. RESULTS: Chronically ill children required significantly more care time than HIV-positive children (7.8 vs 3.9 hours per day). Paid care accounted for 8% to 16% of care time. Annual costs were $9300 per HIV-positive child and $25,900 per chronically ill child. Estimated national annual costs are $86.5 million for HIV-positive children and $155 to $279 billion for chronically ill children. CONCLUSIONS: Informal caregiving represents a substantial economic value to society. The total care burden among chronically ill children is higher than that among children with HIV.
2005
Wilson L; Moskowitz JT; Acree M; Heyman MB; Harmatz P; Ferrando SJ; Folkman S
American Journal Of Public Health
2005
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Journal Article
<a href="http://doi.org/10.2105/AJPH.2004.044248" target="_blank" rel="noreferrer">10.2105/AJPH.2004.044248</a>
Risk factors for long intensive care unit stay after cardiopulmonary bypass in children
Child; Humans; infant; Intensive Care Units; Treatment Outcome; Length of Stay; Risk Factors; Multivariate Analysis; Regression Analysis; Pediatric; Newborn; retrospective studies; ICU Decision Making; Heart Defects; San Francisco; Cardiopulmonary Bypass; Congenital/surgery
OBJECTIVES: To determine whether children who experience longer intensive care unit (ICU) stays after open heart surgery may be identified at admission by clinical criteria. To identify factors associated with longer ICU stays that are potential targets for quality improvement. SETTING: Tertiary pediatric cardiac surgical center. DESIGN: A retrospective review was performed of pre-, intra-, and postoperative factors for children undergoing open heart surgery. All factors were evaluated for strength of association with length of ICU stay (LOS) using a negative binomial model. After multiple analysis, factors were deemed significant if associated with a LOS with p < .02. PATIENTS: A total of 355 pediatric patients who had cardiac surgery with cardiopulmonary bypass in a 1-yr period from April 1999 until March 2000. MEASUREMENTS AND MAIN RESULTS: Children who fell above the 95th percentile for LOS in our institution occupied 30% of bed days and had a three-fold greater mortality. Of all clinical factors considered, those significantly associated with LOS were as follows: preoperative--mechanical ventilation, neonatal status, medical problems, and transfer from abroad; intraoperative--higher operative complexity, increased cardiopulmonary bypass time or ischemic time, and circulatory arrest; and postoperative--delayed sternal closure, sepsis, renal failure, pulmonary hypertension, chylothorax, diaphragm paresis, and arrhythmia. A model combining all factors identified preoperative mechanical ventilation, neonatal status, major medical problems, operative complexity, cardiopulmonary bypass time, and a postoperative complication score as independently associated with LOS (p < .01). CONCLUSIONS: At the time of ICU admission after open heart surgery, clinical criteria are evident that highlight a child's risk of longer ICU stay. These pre- and intraoperative factors relate to LOS independent of subsequent postoperative events. Those postoperative complications that are most strongly associated with increased LOS are identified and, therefore, made accessible to quality control.
2003
Brown KL; Ridout DA; Goldman AP; Hoskote A; Penny DJ
Critical Care Medicine
2003
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Journal Article
<a href="http://doi.org/10.1097/01.CCM.0000046068.19048.86" target="_blank" rel="noreferrer">10.1097/01.CCM.0000046068.19048.86</a>
Postbereavement depressive mood and its prebereavement predictors in HIV+ and HIV- gay men
Humans; Male; Adult; Follow-Up Studies; Middle Aged; Sick Role; Risk Factors; Personality Inventory; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; bereavement; Caregivers/psychology; Acquired Immunodeficiency Syndrome/psychology; Depression/diagnosis/psychology; HIV Seropositivity/psychology; Homosexuality; Male/psychology; San Francisco
Prebereavement predictors of the course of postbereavement depressive mood were examined in 110 gay men who were their partner's caregiver until the partner's death of AIDS. In all, 37 HIV+ and 73 HIV- bereaved caregiving partners were assessed bimonthly throughout a 10-month period beginning 3 months before and ending 7 months after the partner's death. Throughout the 10 months, mean Centers for Epidemiology Scale-Depression (CES-D) scores on depressive mood were above the cutoff for being at risk for major depression. CES-D scores decreased for 63% bereaved caregivers over the 7 postbereavement months, and 37% showed little change from high CES-D scores or increasing CES-D scores. High prebereavement CES-D scores and finding positive meaning in caregiving predicted diminishing depressive mood; HIV+ serostatus, longer relationships, hassles, and use of distancing and self-blame to cope predicted unrelieved depressive mood.
1996
Folkman S; Chesney M; Collette L; Boccellari A; Cooke M
Journal Of Personality And Social Psychology
1996
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/10.1037//0022-3514.70.2.336" target="_blank" rel="noreferrer">10.1037//0022-3514.70.2.336</a>
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>
Death in the intensive care nursery: physician practice of withdrawing and withholding life support
Humans; infant; Intensive Care Units; Medical Futility; Euthanasia; Life Support Care; quality of life; Pediatric; Empirical Approach; Death and Euthanasia; decision making; Newborn; ICU Decision Making; Very Low Birth Weight; Passive; San Francisco; Life Support Systems; University of California
OBJECTIVE: To determine the frequency of selective nontreatment of extremely premature, critically ill, or malformed infants among all infant deaths in a level III intensive care nursery (ICN) and to determine the reasons documented by neonatologists for their decisions to withdraw or withhold life support. METHODS: This was a descriptive study based on review of the medical records of all 165 infants who died at a university-based level III ICN during 3 years. We determined whether each death had occurred despite the use of all available technologies to keep the infant alive or whether these were withheld or withdrawn, thereby leading to the infant's death. We also determined whether neonatologists documented either "futility" or "quality of life" as a reason to limit medical interventions. RESULTS: One hundred sixty-five infants died among the 1609 infants admitted during the study period. One hundred eight infant deaths followed the withdrawal of life support, 13 deaths followed the withholding of treatment, and 44 deaths occurred while infants continued to receive maximal life-sustaining treatment. For 90 (74%) of the 121 deaths attributable to withholding of withdrawal of treatment, physicians cited that death was imminent and treatment was futile. Quality-of-life concerns were cited by the neonatologists as reasons to limit treatment in 62 (51%). Quality of life was the only reason cited for limiting treatment for 28 (23%) of the 121 deaths attributable to withholding or withdrawal of treatment. CONCLUSIONS: The majority of deaths in the ICN occurred as a result of selective nontreatment by neonatologists, with few infants receiving maximal support until the actual time of death. Neonatologists often documented that quality-of-life concerns were considered in decisions to limit treatment; however, the majority of these decisions were based on their belief that treatment was futile. Prospective studies are needed to elucidate the determinants of neonatologists' practice decisions of selective nontreatment for marginally viable or damaged infants.
1997
Wall SN; Partridge JC
Pediatrics
1997
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/10.1097/00006254-199706000-00009" target="_blank" rel="noreferrer">10.1097/00006254-199706000-00009</a>