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Randomized Trial of Communication Facilitators to Reduce Family Distress and Intensity of End-of-Life Care
Communication with family of critically ill patients is often poor and associated with family distress.
To determine if an intensive care unit (ICU) communication facilitator reduces family distress and intensity of end-of-life care.
We conducted a randomized trial at two hospitals. Eligible patients had a predicted mortality greater than or equal to 30% and a surrogate decision maker. Facilitators supported communication between clinicians and families, adapted communication to family needs, and mediated conflict.
Outcomes included depression, anxiety, and post-traumatic stress disorder (PTSD) among family 3 and 6 months after ICU and resource use. We identified 488 eligible patients and randomized 168. Of 352 eligible family members, 268 participated (76%). Family follow-up at 3 and 6 months ranged from 42 to 47%. The intervention was associated with decreased depressive symptoms at 6 months (P = 0.017), but there were no significant differences in psychological symptoms at 3 months or anxiety or PTSD at 6 months. The intervention was not associated with ICU mortality (25% control vs. 21% intervention; P = 0.615) but decreased ICU costs among all patients (per patient: $75,850 control, $51,060 intervention; P = 0.042) and particularly among decedents ($98,220 control, $22,690 intervention; P = 0.028). Among decedents, the intervention reduced ICU and hospital length of stay (28.5 vs. 7.7 d and 31.8 vs. 8.0 d, respectively; P < 0.001).
Communication facilitators may be associated with decreased family depressive symptoms at 6 months, but we found no significant difference at 3 months or in anxiety or PTSD. The intervention reduced costs and length of stay, especially among decedents. This is the first study to find a reduction in intensity of end-of-life care with similar or improved family distress. Clinical trial registered with www.clinicaltrials.gov (NCT 00720200).
Journal Article
A beginner's guide to the end : practical advice for living life and facing death
\"The first-ever soup-to-nuts practical guide to preparing for death, from how to talk to your children about your will, to how to hack the hospice system, to how your survivors can pull off a great eulogy. Think of this as What to Expect When You're Expecting to Die\"-- Provided by publisher.
Book
The impact of advance care planning on end of life care in elderly patients: randomised controlled trial
Objective To investigate the impact of advance care planning on end of life care in elderly patients.Design Prospective randomised controlled trial.Setting Single centre study in a university hospital in Melbourne, Australia.Participants 309 legally competent medical inpatients aged 80 or more and followed for six months or until death.Interventions Participants were randomised to receive usual care or usual care plus facilitated advance care planning. Advance care planning aimed to assist patients to reflect on their goals, values, and beliefs; to consider future medical treatment preferences; to appoint a surrogate; and to document their wishes.Main outcome measures The primary outcome was whether a patient’s end of life wishes were known and respected. Other outcomes included patient and family satisfaction with hospital stay and levels of stress, anxiety, and depression in relatives of patients who died.Results 154 of the 309 patients were randomised to advance care planning, 125 (81%) received advance care planning, and 108 (84%) expressed wishes or appointed a surrogate, or both. Of the 56 patients who died by six months, end of life wishes were much more likely to be known and followed in the intervention group (25/29, 86%) compared with the control group (8/27, 30%; P<0.001). In the intervention group, family members of patients who died had significantly less stress (intervention 5, control 15; P<0.001), anxiety (intervention 0, control 3; P=0.02), and depression (intervention 0, control 5; P=0.002) than those of the control patients. Patient and family satisfaction was higher in the intervention group.Conclusions Advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives.Trial registration Australian New Zealand clinical trials registry ACTRN12608000539336.
Journal Article
Death at work : existential and psychosocial perspectives on end-of-life care
This book explores how, in encounters with the terminally ill and dying, there is something existentially at stake for the professional, not only the patient. It connects the professional and personal lives of the interviewees, a range of professionals working in palliative and intensive care. Kjetil Moen discusses how the inner and outer worlds, the psychic and the social, and the existential and the cultural, all inform professionals' experience of work at the boundary between life and death. Death at Work is written for an academic audience, but is accessible to and offers insights for practitioners in a variety of fields.
Book
Effects of a structured, family-supported, and patient-centred advance care planning on end-of-life decision making among palliative care patients and their family members: protocol of a randomised controlled trial
Background
Advance care planning (ACP) is a well-recognized quality indicator for palliative care. Despite two decades of effort, previous studies showed that ACP-related documentation and end-of-life discussion rates remain low for palliative care patients. Although ACP is about self-determination and autonomy, studies consistently show the importance of family involvement in adult patient’s medical decision-making. Yet, research on ACP interventions with structured components targeting family member remained limited. The current study aims to evaluate the effectiveness of a structured, family-supported, patient-centred ACP programme for adult palliative care patients and their families.
Methods
This is a 2-arm parallel group randomized controlled trial with follow-ups at 6 and 12 months. One hundred and seventy eligible palliative care patients and their families are planned to be recruited from three hospitals, and randomized to either a structured, family-supported, patient-centred ACP programme (ACP-Family) or usual ACP care (ACP-UC) arm. The ACP-Family intervention consists of 2 sessions. The primary outcome is family’s prediction accuracy of patient’s treatment preferences at 6 months. Secondary outcomes include proportions of new ACP documentations and family-reported perception of whether the patient’s end-of-life (EOL) care preference was respected; patient’s decisional conflict; quality of communication; family’s decision-making confidence; family’s anxiety and depression; and patients’ and family members’ satisfaction of the intervention. Outcomes of the two groups will be compared using regressions and linear mixed-effects models.
Discussion
This study will provide rigorous scientific evidence on the effectiveness of a structured and well-design family-supported, patient-centred ACP programme for adult palliative care patients and their family members in the hospital setting. If the ACP-Family proves to be effective, it will provide a structured and systematic approach to facilitate ACP discussions involving family members. This will respond to local needs and inform international ACP practice.
Trial registration
ClinicalTrials.gov Identifier: NCT05935540.
Journal Article
Effect of a Quality-Improvement Intervention on End-of-Life Care in the Intensive Care Unit
Because of high mortality, end-of-life care is an important component of intensive care.
We evaluated the effectiveness of a quality-improvement intervention to improve intensive care unit (ICU) end-of-life care.
We conducted a cluster-randomized trial randomizing 12 hospitals. The intervention targeted clinicians with five components: clinician education, local champions, academic detailing, clinician feedback of quality data, and system supports. Outcomes were assessed for patients dying in the ICU or within 30 hours of ICU discharge using surveys and medical record review. Families completed Quality of Dying and Death (QODD) and satisfaction surveys. Nurses completed the QODD. Data were collected during baseline and follow-up at each hospital (May 2004 to February 2008). We used robust regression models to test for intervention effects, controlling for site, patient, family, and nurse characteristics.
All hospitals completed the trial with 2,318 eligible patients and target sample sizes obtained for family and nurse surveys. The primary outcome, family-QODD, showed no change with the intervention (P = 0.33). There was no change in family satisfaction (P = 0.66) or nurse-QODD (P = 0.81). There was a nonsignificant increase in ICU days before death after the intervention (hazard ratio = 0.9; P = 0.07). Among patients undergoing withdrawal of mechanical ventilation, there was no change in time from admission to withdrawal (hazard ratio = 1.0; P = 0.81).
We found this intervention was associated with no improvement in quality of dying and no change in ICU length of stay before death or time from ICU admission to withdrawal of life-sustaining measures. Improving ICU end-of-life care will require interventions with more direct contact with patients and families. Clinical trial registered with www.clinicaltrials.gov (NCT00685893).
Journal Article
The art of dying well : a practical guide to a good end of life
\"A layperson's guide for positive end of life self care\"-- Provided by publisher.
Book
Perceptions of palliative care among patients with advanced cancer and their caregivers
Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers.
After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis.
A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants’ initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as “ongoing care” that improved their “quality of living” but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting.
There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful.
Journal Article