In the Health Sciences Library:
Royal College of Physicians
Palliative care services : meeting the needs of patients Nov 2007
Shelved at 616.994 ROY
Tuesday, 29 July 2008
Thursday, 17 July 2008
Delivering effective end-of-life care: developing partnership working
Delivering effective end-of-life care: developing partnership working
Wednesday 15 October 2008, 10.00am–4.15pm Royal College of Obstetricians and Gynaecologists, London
Recognition of the need for good-quality end-of-life care is at the heart of the government's new End of Life Care Strategy. Produced in partnership between The King's Fund, Marie Curie Cancer Care and the National Council for Palliative Care, this one-day conference will highlight the key challenges involved in implementing the strategy.
Much pioneering work has been done by a wide range of organisations across health and social care. In order to enable greater choice for those at the end of their life, there is now a move towards more effective commissioning and co-ordination of this care. We will share good practice and innovation using case studies and interactive workshops, with a focus on partnership working.
We are delighted to announce that Professor Mike Richards CBE, Chair, End of Life Care Strategy Advisory Board and National Clinical Director for Cancer, will give the keynote address and that the full conference programme is available on our website.
Confirmed speakers include the following:
Dr James Beattie, National Clinical Lead, NHS Heart Improvement Programme and Consultant Cardiologist, Birmingham Heartlands Hospital, on delivering effective end-of-life care for non-cancer patients.
Dr Andrew Daley, Consultant, Bradford Teaching Hospitals NHS Foundation Trust, on identifying and better understanding your palliative care patients.
Martin Green, Chief Executive, English Community Care Association, on the challenges of partnership working.
Penny Hansford, Director of Nursing, St Christopher's Hospice, on delivering staff skills.
Martin McShane, Director of Strategic Planning and Health Outcomes, Lincolnshire Primary Care Trust, on the challenges of commissioning.
Wednesday 15 October 2008, 10.00am–4.15pm Royal College of Obstetricians and Gynaecologists, London
Recognition of the need for good-quality end-of-life care is at the heart of the government's new End of Life Care Strategy. Produced in partnership between The King's Fund, Marie Curie Cancer Care and the National Council for Palliative Care, this one-day conference will highlight the key challenges involved in implementing the strategy.
Much pioneering work has been done by a wide range of organisations across health and social care. In order to enable greater choice for those at the end of their life, there is now a move towards more effective commissioning and co-ordination of this care. We will share good practice and innovation using case studies and interactive workshops, with a focus on partnership working.
We are delighted to announce that Professor Mike Richards CBE, Chair, End of Life Care Strategy Advisory Board and National Clinical Director for Cancer, will give the keynote address and that the full conference programme is available on our website.
Confirmed speakers include the following:
Dr James Beattie, National Clinical Lead, NHS Heart Improvement Programme and Consultant Cardiologist, Birmingham Heartlands Hospital, on delivering effective end-of-life care for non-cancer patients.
Dr Andrew Daley, Consultant, Bradford Teaching Hospitals NHS Foundation Trust, on identifying and better understanding your palliative care patients.
Martin Green, Chief Executive, English Community Care Association, on the challenges of partnership working.
Penny Hansford, Director of Nursing, St Christopher's Hospice, on delivering staff skills.
Martin McShane, Director of Strategic Planning and Health Outcomes, Lincolnshire Primary Care Trust, on the challenges of commissioning.
Journal of palliative medicine Mar 2008 vol. 11 no. 2
Trial of angioembolization of advanced stage tumors feeding arteries exemplifying aggressive and active interventional palliation.
p. 250-3
A bien experience.
p. 248-9
Hernandez-Howard-R.
Case-Reports, Journal-Article.
Criminal prosecutions of physicians providing palliative or end-of- life care.
p. 233-41
Kollas-Chad-D, Boyer-Kollas-Beth, Kollas-James-W.
Abstract
Although medical malpractice suits commonly occur in medical practice, few physicians experienced criminal prosecution related to adverse clinical outcomes before 1990. Criminal prosecutions of physicians increased in frequency early in that decade, however, including a handful of cases involving palliative or end-of-life care. Reviews published around the end of the 1990s examined those prosecutions, listing causative factors and offering recommendations to prevent further cases. In this paper, we provide an updated review of criminal prosecutions of physicians providing palliative or end- of-life care, presenting three cases that occurred after 1998. We summarize these newer cases' chronologies and outcomes, comparing them to cases described in past reviews. Our analysis suggests that important factors not described in earlier reviews, especially conflicting views of the standard of care in hospice and palliative medicine, contributed to the development of these prosecutions.
Determinants of do-not-resuscitate orders in palliative home care.
p. 226-32
Brink-Peter, Smith-Trevor-Frise, Kitson-Maureen.
Abstract
OVERVIEW: Do-not-resuscitate (DNR) orders allow home care clients to communicate their own wishes over medical treatment decisions, helping to preserve their dignity and autonomy. To date, little is known about DNR orders in palliative home care. Basic research to identify rates of completion and determinants of DNR orders has yet to be examined in palliative home care. PURPOSE: The purpose of this exploratory study was to determine who in palliative home care has a DNR order as part of their advance directive. METHODS: Information on health was collected using the interRAI instrument for palliative care (interRAI PC). The sample included 470 home care clients from one community care access centre in Ontario. RESULTS: This study indicated that a preference to die at home (odds ratio (OR): 8.29, confidence interval (CI): 4.55-15.11); close proximity to death (OR: 0.99, CI: 0.99-1.00); daily incontinence (OR: 2.74, CI: 1.05-7.16); and sleep problems (OR: 1.85, CI: 1.02-3.37) are associated with DNR orders. In addition, clients who are more accepting of their situation are 5.67 times (CI: 1.67-19.27) more likely to have a DNR in place. CONCLUSION: This study represents an important first step to identifying issues related to DNR orders. In addition to proximity to death, incontinence, and sleep problems, acceptance of one's own situation and a preference to die at home are important determinants of DNR completion. The results imply that these discussions might often depend not only on the health of the clients but also on the clients' acceptance of their current situation and where they wish to die.
Improving end-of-life outcomes in nursing homes by targeting residents at high-risk of mortality for palliative care: program description and evaluation.
p. 217-25
Levy-Cari, Morris-Monica, Kramer-Andrew.
Abstract
OBJECTIVES: The objectives were (1) to describe the Making Advance Planning a Priority (MAPP) program, a program designed to identify nursing home (NH) residents at high risk of death and (2) to evaluate end-of-life care outcomes for NH residents at high risk of death. DESIGN: Program description and evaluation using a retrospective chart review before and after implementation of the MAPP program. PARTICIPANTS: NH residents who died 1 year before program implementation compared to NH residents who died 1 year after program implementation (n = 72). Program description: The MAPP program was designed to: (1) identify residents at high risk of death, (2) inform the attending physician of the residents' mortality risk, (3) obtain palliative care or, if the prognosis was 6 months of less, a hospice consultation, and (4) improve advance care planning documentation. Program evaluation: Site of death (hospital versus nursing home), presence of an advance directive, presence of an order for cardiopulmonary resuscitation, proportion of NH residents with palliative care and/or hospice consultation prior to death, length of palliative care and/or hospice services before death. Following implementation of the MAPP program, we hypothesized that there would be a reduction in hospitalizations, an increase in hospice/palliative care referrals, an increase hospice/palliative care length of service, an increase the utilization of advance directives, but no difference in days in the hospital before death. RESULTS: Following implementation of the MAPP program intervention, residents were less likely to die in the hospital (48.2% preintervention versus 8.9% postintervention, p < 0.0001). Every resident who died after implementation of the MAPP program had an advanced directive (p = 0.03). Residents were more also more likely to get palliative care referrals (7.4% preintervention versus 31.1% postintervention, p = 0.02). CONCLUSION: An intervention designed to address the end-of- life needs of NH residents at high risk of death improves end-of-life outcomes with a reduction in terminal hospitalizations, an increase in palliative care referrals and improvement of advance directive completion.
Is there a higher risk of respiratory depression in opioid-naive palliative care patients during symptomatic therapy of dyspnea with strong opioids?
p. 204-16
Clemens-Katri-Elina, Quednau-Ines, Klaschik-Eberhard.
Abstract OBJECTIVE: Dyspnea is a highly prevalent symptom in palliative care patients. Opioids are the first-line therapy for symptomatic relief of dyspnea. However, respiratory depression is still a feared side effect of therapy with WHO III opioids. The risk of respiratory depression in opioid-naive patients and in patients pretreated with strong opioids during symptomatic therapy of dyspnea was investigated in palliative care patients. PATIENTS AND METHODS: Twenty-seven patients were included in a prospective, nonrandomized study. All patients suffered from moderate to severe dyspnea. Transcutaneous measurement (earlobe sensor) of carbon dioxide partial pressure (tcpa CO(2)), pulse oximetry oxygen saturation (SaO(2)), and pulse frequency (PF) were monitored with SenTec Digital Monitor (SenTec AG, Therwill, CH). The following monitoring data were compared: baseline recording for 15 minutes, and 30, 60, 90, and 120 minutes after opioid application. RESULTS: The data obtained with transcutaneous measurement showed that there were no significant differences between the groups of opioid-naive patients and those pretreated with strong opioids with regard to tcpaCO(2) increase or SaO(2) decrease after the first opioid application. Neither SaO(2) decreased significantly nor tcpaCO(2) increased significantly after the initial opioid application, which means there was no opioid-induced respiratory depression. The first opioid application, however, resulted in a significant decrease in the intensity of dyspnea and respiratory rate. CONCLUSIONS: No higher risk of respiratory depression and increase in tcpaCO2 in opioid-naive palliative care patients, compared to patients pretreated with strong opioids, during symptomatic therapy of dyspnea with strong opioids could be found.
End-of-life care in adults with cystic fibrosis
p. 198-203
Philip-Jennifer-A-M, Gold-Michelle, Sutherland-Sharon et al
BACKGROUND: Cystic fibrosis (CF) is a life-limiting congenital disease, with most patients dying at a young age of progressive lung disease. Lung transplantation offers hope for many but may not occur. There is little to guide the provision of palliative care to this young population who maintain hope in the possibility of lung transplantation. METHODS: To inform the development of an appropriate model of palliative care, a medical record review of CF patients dying within a 5-year period without lung transplantation was undertaken. The aspects of care that were preventative, therapeutic, or palliative were quantified. RESULTS: Of the 20 records studied, all died in hospital. Only 15% of patients had a do-not-resuscitate order agreed to more than 1 week prior to death, increasing to 90% at the time of death (median of 2 days before death). Opioids were prescribed for 1 patient (5%) at 1 week prior to death, increasing to 85% of patients in the last 24 hours of life (median of 36 hours before death). During the last 24 hours of life, intravenous antibiotics continued in 85%, and assisted ventilation in 90% of subjects. CONCLUSION: We conclude that the circumstances surrounding the death of patients with CF holds challenges for their effective palliative care. CF patients continue life prolonging and preventative treatments until the last hours of life. There is an urgent need to examine palliative care approaches that may usefully coexist with maintaining transplantation options in the end-of-life care of this population.
Clinical findings of a palliative care consultation team at a comprehensive cancer center.
p. 191-7
Dhillon-Navneet, Kopetz-Scott, Pei-Be-Lian, Fabbro-Egidio-Del, Zhang- Tao, Bruera-Eduardo. Abstract BACKGROUND: Palliative care consultation teams (PCCTs) are being established in cancer centers for the management of patients' physical and psychosocial distress. As clinical findings of these teams have been reported infrequently, we aim to describe the experience of our high-volume inpatient PCCT. PATIENTS AND METHODS: We obtained clinical and demographic data on patients referred to our PCCT from the palliative care departmental database from September 1, 2003, to August 31, 2004. RESULTS: In 1 year, 1067 consultations took place for 922 hospitalized patients. The patients' mean age was 60 (range, 3-98) years. The most common cancers were thoracic/head and neck, gastrointestinal, genitourinary, gynecologic cancers, and lymphoma. Thirty-four percent of the patients were transferred to the inpatient palliative care unit, while the remainder were followed by the PCCT as consultants. The main problems requiring PCCT consultation were pain (56%), delirium (34%), dyspnea (25%), fatigue (14%), and end-of-life psychosocial (EOL) issues (12%). Twenty-four percent of patients died during the hospitalization. Death during the hospitalization was more common in patients with delirium, dyspnea, and EOL issues and less likely in patients referred to the PCCT for pain or depression. Constipation was more common in patients with solid tumors, whereas EOL issues were more common in patients with hematologic malignancies. Of the patients who were able to be discharged, 56% went home, 37% to hospice, and 7% elsewhere. CONCLUSIONS: These results provide insight into the demand and utility of this service for those considering the establishment of a PCCT.
Impact of an inpatient palliative care team: a randomized control trial.
p. 180-90
Gade-Glenn, Venohr-Ingrid, Conner-Douglas, McGrady-Kathleen, Beane- Jeffrey et al
Abstract BACKGROUND: Palliative care improves care and reduces costs for hospitalized patients with life-limiting illnesses. There have been no multicenter randomized trials examining impact on patient satisfaction, clinical outcomes, and subsequent health care costs. OBJECTIVE: Measure the impact of an interdisciplinary palliative care service (IPCS) on patient satisfaction, clinical outcomes, and cost of care for 6 months posthospital discharge. METHODS: Multicenter, randomized, controlled trial. IPCS provided consultative, interdisciplinary, palliative care to intervention patients. Controls received usual hospital care (UC). SETTING AND SAMPLE: Five hundred seventeen patients with life-limiting illnesses from a hospital in Denver, Portland, and San Francisco enrolled June 2002 to December 2003. MEASURES: Modified City of Hope Patient Questionnaire, total health care costs, hospice utilization, and survival. RESULTS: IPCS reported higher scores for the Care Experience scale (IPCS: 6.9 versus UC: 6.6, p = 0.04) and for the Doctors, Nurses/Other Care Providers Communication scale (IPCS: 8.3 versus UC: 7.5, p = 0.0004). IPCS patients had fewer intensive care admissions (ICU) on hospital readmission (12 versus 21, p = 0.04), and lower 6-month net cost savings of $4,855 per patient (p = 0.001). IPCS had longer median hospice stays (24 days versus 12 days, p = 0.04). There were no differences in survival or symptom control. CONCLUSIONS: IPCS patients reported greater satisfaction with their care experience and providers' communication, had fewer ICU admissions on readmission, and lower total health care costs following hospital discharge.
Building the field of cancer pain
p. 176-9
Foley-Kathleen-M.
Growing pains: health care enters team-age
p. 171-5
Periyakoil-Vyjeyanthi-S.
Introduction of a pediatric palliative care curriculum for pediatric residents.
p. 164-70
Schiffman-Joshua-D, Chamberlain-Lisa-J, Palmer-Laura, Contro-Nancy et al
Abstract INTRODUCTION: The Pediatric Palliative Care Curriculum (PPCC) was introduced as a pilot study in response to the published need for increased pediatric education in end-of-life (EOL) care. The PPCC was designed to better train residents in EOL issues so they could become more comfortable and knowledgeable in caring for children and adolescents with life-threatening illnesses. METHOD: The PPCC consisted of six hour-long sessions run by a clinical psychologist, a licensed social worker, and faculty with experience in EOL care. The curriculum repeated every 6 weeks for 1 year. Residents in the training program at Stanford University rotating through oncology, pulmonology, and pediatric intensive care unit (PICU) were invited to attend. Session topics included: (1) personal coping skills, (2) being a caring professional, (3) recognizing cultural and familial differences, (4) pain management, (5) practical issues, and (6) meeting a bereaved parent. Pretest and posttest surveys with five- point Likert scale questions were used to measure curricular impact. RESULTS: Statistically significant improvement was found in resident self-report of: feeling prepared to initiate do-not-resuscitate discussions
p. 250-3
A bien experience.
p. 248-9
Hernandez-Howard-R.
Case-Reports, Journal-Article.
Criminal prosecutions of physicians providing palliative or end-of- life care.
p. 233-41
Kollas-Chad-D, Boyer-Kollas-Beth, Kollas-James-W.
Abstract
Although medical malpractice suits commonly occur in medical practice, few physicians experienced criminal prosecution related to adverse clinical outcomes before 1990. Criminal prosecutions of physicians increased in frequency early in that decade, however, including a handful of cases involving palliative or end-of-life care. Reviews published around the end of the 1990s examined those prosecutions, listing causative factors and offering recommendations to prevent further cases. In this paper, we provide an updated review of criminal prosecutions of physicians providing palliative or end- of-life care, presenting three cases that occurred after 1998. We summarize these newer cases' chronologies and outcomes, comparing them to cases described in past reviews. Our analysis suggests that important factors not described in earlier reviews, especially conflicting views of the standard of care in hospice and palliative medicine, contributed to the development of these prosecutions.
Determinants of do-not-resuscitate orders in palliative home care.
p. 226-32
Brink-Peter, Smith-Trevor-Frise, Kitson-Maureen.
Abstract
OVERVIEW: Do-not-resuscitate (DNR) orders allow home care clients to communicate their own wishes over medical treatment decisions, helping to preserve their dignity and autonomy. To date, little is known about DNR orders in palliative home care. Basic research to identify rates of completion and determinants of DNR orders has yet to be examined in palliative home care. PURPOSE: The purpose of this exploratory study was to determine who in palliative home care has a DNR order as part of their advance directive. METHODS: Information on health was collected using the interRAI instrument for palliative care (interRAI PC). The sample included 470 home care clients from one community care access centre in Ontario. RESULTS: This study indicated that a preference to die at home (odds ratio (OR): 8.29, confidence interval (CI): 4.55-15.11); close proximity to death (OR: 0.99, CI: 0.99-1.00); daily incontinence (OR: 2.74, CI: 1.05-7.16); and sleep problems (OR: 1.85, CI: 1.02-3.37) are associated with DNR orders. In addition, clients who are more accepting of their situation are 5.67 times (CI: 1.67-19.27) more likely to have a DNR in place. CONCLUSION: This study represents an important first step to identifying issues related to DNR orders. In addition to proximity to death, incontinence, and sleep problems, acceptance of one's own situation and a preference to die at home are important determinants of DNR completion. The results imply that these discussions might often depend not only on the health of the clients but also on the clients' acceptance of their current situation and where they wish to die.
Improving end-of-life outcomes in nursing homes by targeting residents at high-risk of mortality for palliative care: program description and evaluation.
p. 217-25
Levy-Cari, Morris-Monica, Kramer-Andrew.
Abstract
OBJECTIVES: The objectives were (1) to describe the Making Advance Planning a Priority (MAPP) program, a program designed to identify nursing home (NH) residents at high risk of death and (2) to evaluate end-of-life care outcomes for NH residents at high risk of death. DESIGN: Program description and evaluation using a retrospective chart review before and after implementation of the MAPP program. PARTICIPANTS: NH residents who died 1 year before program implementation compared to NH residents who died 1 year after program implementation (n = 72). Program description: The MAPP program was designed to: (1) identify residents at high risk of death, (2) inform the attending physician of the residents' mortality risk, (3) obtain palliative care or, if the prognosis was 6 months of less, a hospice consultation, and (4) improve advance care planning documentation. Program evaluation: Site of death (hospital versus nursing home), presence of an advance directive, presence of an order for cardiopulmonary resuscitation, proportion of NH residents with palliative care and/or hospice consultation prior to death, length of palliative care and/or hospice services before death. Following implementation of the MAPP program, we hypothesized that there would be a reduction in hospitalizations, an increase in hospice/palliative care referrals, an increase hospice/palliative care length of service, an increase the utilization of advance directives, but no difference in days in the hospital before death. RESULTS: Following implementation of the MAPP program intervention, residents were less likely to die in the hospital (48.2% preintervention versus 8.9% postintervention, p < 0.0001). Every resident who died after implementation of the MAPP program had an advanced directive (p = 0.03). Residents were more also more likely to get palliative care referrals (7.4% preintervention versus 31.1% postintervention, p = 0.02). CONCLUSION: An intervention designed to address the end-of- life needs of NH residents at high risk of death improves end-of-life outcomes with a reduction in terminal hospitalizations, an increase in palliative care referrals and improvement of advance directive completion.
Is there a higher risk of respiratory depression in opioid-naive palliative care patients during symptomatic therapy of dyspnea with strong opioids?
p. 204-16
Clemens-Katri-Elina, Quednau-Ines, Klaschik-Eberhard.
Abstract OBJECTIVE: Dyspnea is a highly prevalent symptom in palliative care patients. Opioids are the first-line therapy for symptomatic relief of dyspnea. However, respiratory depression is still a feared side effect of therapy with WHO III opioids. The risk of respiratory depression in opioid-naive patients and in patients pretreated with strong opioids during symptomatic therapy of dyspnea was investigated in palliative care patients. PATIENTS AND METHODS: Twenty-seven patients were included in a prospective, nonrandomized study. All patients suffered from moderate to severe dyspnea. Transcutaneous measurement (earlobe sensor) of carbon dioxide partial pressure (tcpa CO(2)), pulse oximetry oxygen saturation (SaO(2)), and pulse frequency (PF) were monitored with SenTec Digital Monitor (SenTec AG, Therwill, CH). The following monitoring data were compared: baseline recording for 15 minutes, and 30, 60, 90, and 120 minutes after opioid application. RESULTS: The data obtained with transcutaneous measurement showed that there were no significant differences between the groups of opioid-naive patients and those pretreated with strong opioids with regard to tcpaCO(2) increase or SaO(2) decrease after the first opioid application. Neither SaO(2) decreased significantly nor tcpaCO(2) increased significantly after the initial opioid application, which means there was no opioid-induced respiratory depression. The first opioid application, however, resulted in a significant decrease in the intensity of dyspnea and respiratory rate. CONCLUSIONS: No higher risk of respiratory depression and increase in tcpaCO2 in opioid-naive palliative care patients, compared to patients pretreated with strong opioids, during symptomatic therapy of dyspnea with strong opioids could be found.
End-of-life care in adults with cystic fibrosis
p. 198-203
Philip-Jennifer-A-M, Gold-Michelle, Sutherland-Sharon et al
BACKGROUND: Cystic fibrosis (CF) is a life-limiting congenital disease, with most patients dying at a young age of progressive lung disease. Lung transplantation offers hope for many but may not occur. There is little to guide the provision of palliative care to this young population who maintain hope in the possibility of lung transplantation. METHODS: To inform the development of an appropriate model of palliative care, a medical record review of CF patients dying within a 5-year period without lung transplantation was undertaken. The aspects of care that were preventative, therapeutic, or palliative were quantified. RESULTS: Of the 20 records studied, all died in hospital. Only 15% of patients had a do-not-resuscitate order agreed to more than 1 week prior to death, increasing to 90% at the time of death (median of 2 days before death). Opioids were prescribed for 1 patient (5%) at 1 week prior to death, increasing to 85% of patients in the last 24 hours of life (median of 36 hours before death). During the last 24 hours of life, intravenous antibiotics continued in 85%, and assisted ventilation in 90% of subjects. CONCLUSION: We conclude that the circumstances surrounding the death of patients with CF holds challenges for their effective palliative care. CF patients continue life prolonging and preventative treatments until the last hours of life. There is an urgent need to examine palliative care approaches that may usefully coexist with maintaining transplantation options in the end-of-life care of this population.
Clinical findings of a palliative care consultation team at a comprehensive cancer center.
p. 191-7
Dhillon-Navneet, Kopetz-Scott, Pei-Be-Lian, Fabbro-Egidio-Del, Zhang- Tao, Bruera-Eduardo. Abstract BACKGROUND: Palliative care consultation teams (PCCTs) are being established in cancer centers for the management of patients' physical and psychosocial distress. As clinical findings of these teams have been reported infrequently, we aim to describe the experience of our high-volume inpatient PCCT. PATIENTS AND METHODS: We obtained clinical and demographic data on patients referred to our PCCT from the palliative care departmental database from September 1, 2003, to August 31, 2004. RESULTS: In 1 year, 1067 consultations took place for 922 hospitalized patients. The patients' mean age was 60 (range, 3-98) years. The most common cancers were thoracic/head and neck, gastrointestinal, genitourinary, gynecologic cancers, and lymphoma. Thirty-four percent of the patients were transferred to the inpatient palliative care unit, while the remainder were followed by the PCCT as consultants. The main problems requiring PCCT consultation were pain (56%), delirium (34%), dyspnea (25%), fatigue (14%), and end-of-life psychosocial (EOL) issues (12%). Twenty-four percent of patients died during the hospitalization. Death during the hospitalization was more common in patients with delirium, dyspnea, and EOL issues and less likely in patients referred to the PCCT for pain or depression. Constipation was more common in patients with solid tumors, whereas EOL issues were more common in patients with hematologic malignancies. Of the patients who were able to be discharged, 56% went home, 37% to hospice, and 7% elsewhere. CONCLUSIONS: These results provide insight into the demand and utility of this service for those considering the establishment of a PCCT.
Impact of an inpatient palliative care team: a randomized control trial.
p. 180-90
Gade-Glenn, Venohr-Ingrid, Conner-Douglas, McGrady-Kathleen, Beane- Jeffrey et al
Abstract BACKGROUND: Palliative care improves care and reduces costs for hospitalized patients with life-limiting illnesses. There have been no multicenter randomized trials examining impact on patient satisfaction, clinical outcomes, and subsequent health care costs. OBJECTIVE: Measure the impact of an interdisciplinary palliative care service (IPCS) on patient satisfaction, clinical outcomes, and cost of care for 6 months posthospital discharge. METHODS: Multicenter, randomized, controlled trial. IPCS provided consultative, interdisciplinary, palliative care to intervention patients. Controls received usual hospital care (UC). SETTING AND SAMPLE: Five hundred seventeen patients with life-limiting illnesses from a hospital in Denver, Portland, and San Francisco enrolled June 2002 to December 2003. MEASURES: Modified City of Hope Patient Questionnaire, total health care costs, hospice utilization, and survival. RESULTS: IPCS reported higher scores for the Care Experience scale (IPCS: 6.9 versus UC: 6.6, p = 0.04) and for the Doctors, Nurses/Other Care Providers Communication scale (IPCS: 8.3 versus UC: 7.5, p = 0.0004). IPCS patients had fewer intensive care admissions (ICU) on hospital readmission (12 versus 21, p = 0.04), and lower 6-month net cost savings of $4,855 per patient (p = 0.001). IPCS had longer median hospice stays (24 days versus 12 days, p = 0.04). There were no differences in survival or symptom control. CONCLUSIONS: IPCS patients reported greater satisfaction with their care experience and providers' communication, had fewer ICU admissions on readmission, and lower total health care costs following hospital discharge.
Building the field of cancer pain
p. 176-9
Foley-Kathleen-M.
Growing pains: health care enters team-age
p. 171-5
Periyakoil-Vyjeyanthi-S.
Introduction of a pediatric palliative care curriculum for pediatric residents.
p. 164-70
Schiffman-Joshua-D, Chamberlain-Lisa-J, Palmer-Laura, Contro-Nancy et al
Abstract INTRODUCTION: The Pediatric Palliative Care Curriculum (PPCC) was introduced as a pilot study in response to the published need for increased pediatric education in end-of-life (EOL) care. The PPCC was designed to better train residents in EOL issues so they could become more comfortable and knowledgeable in caring for children and adolescents with life-threatening illnesses. METHOD: The PPCC consisted of six hour-long sessions run by a clinical psychologist, a licensed social worker, and faculty with experience in EOL care. The curriculum repeated every 6 weeks for 1 year. Residents in the training program at Stanford University rotating through oncology, pulmonology, and pediatric intensive care unit (PICU) were invited to attend. Session topics included: (1) personal coping skills, (2) being a caring professional, (3) recognizing cultural and familial differences, (4) pain management, (5) practical issues, and (6) meeting a bereaved parent. Pretest and posttest surveys with five- point Likert scale questions were used to measure curricular impact. RESULTS: Statistically significant improvement was found in resident self-report of: feeling prepared to initiate do-not-resuscitate discussions
End-of-life care in UK critical care units
End-of-life care in UK critical care units - a literature review.
Nursing in critical care, May-Jun 2008, vol. 13, no. 3
p. 152-61
Morgan-Jane.
Abstract
AIM: To appraise literature concerning end-of-life care (ELC) in adult critical care units in the UK in order to improve clinical practice. OBJECTIVE: To understand the interplay between legal and ethical, political, societal aspects of ELC for sustainable quality care. BACKGROUND: Significant changes in health care policy for the critically ill patient have occurred since 1999. Simultaneously, the government is committed to improving care for the dying by integrating the palliative care ethos across the National Institutes of Health (NHS) to include non-cancer sufferers. Death continues to be a feature of critical illness, particularly following the decision to withhold/withdraw life-prolonging treatments. SEARCH STRATEGY: A search of MEDLINE, BNI, CINAHL and PSYCinfo using key words revealed very few results; consequently, the search was broadened to include ASSIA, King's Fund, TRIP, Healthstar, NHS Economic Evaluation Data, Cochrane, professional journals and government documents. CONCLUSIONS: The literature reveals a paradigm shift from critical to palliative care, in other words, from a reductionist approach to a more humanistic approach in the acute setting. When treatment is deemed futile, quality ELC involving the assessment, ongoing assessment and care after death becomes the new goal for the critical care team. To practice ELC competently, nurses require organizational and educational support at local and national levels. RELEVANCE TO CLINICAL PRACTICE: Although medico-legal decision-making is not part of their professional role, critical care nurses have an extraordinary opportunity to make a difference to the dying patient and their family and their acceptance of death.
Nursing in critical care, May-Jun 2008, vol. 13, no. 3
p. 152-61
Morgan-Jane.
Abstract
AIM: To appraise literature concerning end-of-life care (ELC) in adult critical care units in the UK in order to improve clinical practice. OBJECTIVE: To understand the interplay between legal and ethical, political, societal aspects of ELC for sustainable quality care. BACKGROUND: Significant changes in health care policy for the critically ill patient have occurred since 1999. Simultaneously, the government is committed to improving care for the dying by integrating the palliative care ethos across the National Institutes of Health (NHS) to include non-cancer sufferers. Death continues to be a feature of critical illness, particularly following the decision to withhold/withdraw life-prolonging treatments. SEARCH STRATEGY: A search of MEDLINE, BNI, CINAHL and PSYCinfo using key words revealed very few results; consequently, the search was broadened to include ASSIA, King's Fund, TRIP, Healthstar, NHS Economic Evaluation Data, Cochrane, professional journals and government documents. CONCLUSIONS: The literature reveals a paradigm shift from critical to palliative care, in other words, from a reductionist approach to a more humanistic approach in the acute setting. When treatment is deemed futile, quality ELC involving the assessment, ongoing assessment and care after death becomes the new goal for the critical care team. To practice ELC competently, nurses require organizational and educational support at local and national levels. RELEVANCE TO CLINICAL PRACTICE: Although medico-legal decision-making is not part of their professional role, critical care nurses have an extraordinary opportunity to make a difference to the dying patient and their family and their acceptance of death.
Understanding palliative nursing care
Understanding palliative nursing care.
Full text available at ProQuest
The Journal of practical nursing, Spring 2008, vol. 58, no. 1
p. 6-9; quiz 10-1
Geoghan-Darlene-A.
Abstract
Palliative care is care that is given to patients and their significant others who are experiencing life-threatening or life- altering illnesses by providing emotional, spiritual, and physical support. Patients can continue to receive aggressive medical treatment while receiving palliative care and recovery is possible. Pain control is a top priority in palliative care. Non- pharmacological interventions have also been shown to be effective in palliative care as well. Palliative care is truly a holistic, collaborative practice engaging many disciplines in the care of the patient and their love ones.
Full text available at ProQuest
The Journal of practical nursing, Spring 2008, vol. 58, no. 1
p. 6-9; quiz 10-1
Geoghan-Darlene-A.
Abstract
Palliative care is care that is given to patients and their significant others who are experiencing life-threatening or life- altering illnesses by providing emotional, spiritual, and physical support. Patients can continue to receive aggressive medical treatment while receiving palliative care and recovery is possible. Pain control is a top priority in palliative care. Non- pharmacological interventions have also been shown to be effective in palliative care as well. Palliative care is truly a holistic, collaborative practice engaging many disciplines in the care of the patient and their love ones.
BMC medical research methodology, 2008 (epub) , vol. 8
The changing causal foundations of cancer-related symptom clustering during the final month of palliative care: a longitudinal study.
p. 36
Olson-Karin, Hayduk-Leslie, Cree-Marilyn, Cui-Ying et al
Abstract
BACKGROUND: Symptoms tend to occur in what have been called symptom clusters. Early symptom cluster research was imprecise regarding the causal foundations of the coordinations between specific symptoms, and was silent on whether the relationships between symptoms remained stable over time. This study develops a causal model of the relationships between symptoms in cancer palliative care patients as they approach death, and investigates the changing associations among the symptoms and between those symptoms and well-being. METHODS: Complete symptom assessment scores were obtained for 82 individuals from an existing palliative care database. The data included assessments of pain, anxiety, nausea, shortness of breath, drowsiness, loss of appetite, tiredness, depression and well-being, all collected using the Edmonton Symptom Assessment System (ESAS). Relationships between the symptoms and well-being were investigated using a structural equation model. RESULTS: The model fit acceptably and explained between 26% and 83% of the variation in appetite, tiredness, depression, and well-being. Drowsiness displayed consistent effects on appetite, tiredness and well-being. In contrast, anxiety's effect on well-being shifted importantly, with a direct effect and an indirect effect through tiredness at one month, being replaced by an effect working exclusively through depression at one week. CONCLUSION: Some of the causal forces explaining the variations in, and relationships among, palliative care patients' symptoms changed over the final month of life. This illustrates how investigating the causal foundations of symptom correlation or clustering can provide more detailed understandings that may contribute to improved control of patient comfort, quality of life, and quality of death.
p. 36
Olson-Karin, Hayduk-Leslie, Cree-Marilyn, Cui-Ying et al
Abstract
BACKGROUND: Symptoms tend to occur in what have been called symptom clusters. Early symptom cluster research was imprecise regarding the causal foundations of the coordinations between specific symptoms, and was silent on whether the relationships between symptoms remained stable over time. This study develops a causal model of the relationships between symptoms in cancer palliative care patients as they approach death, and investigates the changing associations among the symptoms and between those symptoms and well-being. METHODS: Complete symptom assessment scores were obtained for 82 individuals from an existing palliative care database. The data included assessments of pain, anxiety, nausea, shortness of breath, drowsiness, loss of appetite, tiredness, depression and well-being, all collected using the Edmonton Symptom Assessment System (ESAS). Relationships between the symptoms and well-being were investigated using a structural equation model. RESULTS: The model fit acceptably and explained between 26% and 83% of the variation in appetite, tiredness, depression, and well-being. Drowsiness displayed consistent effects on appetite, tiredness and well-being. In contrast, anxiety's effect on well-being shifted importantly, with a direct effect and an indirect effect through tiredness at one month, being replaced by an effect working exclusively through depression at one week. CONCLUSION: Some of the causal forces explaining the variations in, and relationships among, palliative care patients' symptoms changed over the final month of life. This illustrates how investigating the causal foundations of symptom correlation or clustering can provide more detailed understandings that may contribute to improved control of patient comfort, quality of life, and quality of death.
Friday, 11 July 2008
BMC Health Services Research 2008 Vol 8
A method to determine spatial access to specialized palliative care services using GIS
Jonathan Cinnamon ; Nadine Schuurman and Valorie A Crooks
2008 ; VOL 8 (2008-01-07)
From BioMed Central [PDF] [Abstract]
Page: 140
Jonathan Cinnamon ; Nadine Schuurman and Valorie A Crooks
2008 ; VOL 8 (2008-01-07)
From BioMed Central [PDF] [Abstract]
Page: 140
Canadian Family Physician 2008 ; Vol 54 ; Apr
Management of bone metastases
Andre Bonneau
From UK PubMed Central [PDF] (/1967 - 05/2008)
Page: 524-528
Andre Bonneau
From UK PubMed Central [PDF] (/1967 - 05/2008)
Page: 524-528
Computer-based information tool for palliative severe pain management.
An interdisciplinary computer-based information tool for palliative severe pain management.
Journal of the American Medical Informatics Association : May-Jun 2008 vol. 15, no. 3, p. 374-82
Kuziemsky-Craig-E, Weber-Jahnke-Jens-H, Lau-Francis, Downing-G- Michael.
Abstract
OBJECTIVES: As patient care becomes more collaborative in nature, there is a need for information technology that supports interdisciplinary practices of care. This study developed and performed usability testing of a standalone computer-based information tool to support the interdisciplinary practice of palliative severe pain management (SPM). DESIGN: A grounded theory- participatory design (GT-PD) approach was used with three distinct palliative data sources to obtain and understand user requirements for SPM practice and how a computer-based information tool could be designed to support those requirements. RESULTS: The GT-PD concepts and categories provided a rich perspective of palliative SPM and the process and information support required for different SPM tasks. A conceptual framework consisting of an ontology and a set of three problem-solving methods was developed to reconcile the requirements of different interdisciplinary team members. The conceptual framework was then implemented as a prototype computer-based information tool that has different modes of use to support both day-to-day case management and education of palliative SPM. Usability testing of the computer tool was performed, and the tool tested favorably in a laboratory setting. CONCLUSION: An interdisciplinary computer-based information tool can be developed to support the different work practices and information needs of interdisciplinary team members, but explicit requirements must be sought from all prospective users of such a tool. Qualitative methods such as the hybrid GT-PD approach used in this research are particularly helpful for articulating computer tool design requirements.
Journal of the American Medical Informatics Association : May-Jun 2008 vol. 15, no. 3, p. 374-82
Kuziemsky-Craig-E, Weber-Jahnke-Jens-H, Lau-Francis, Downing-G- Michael.
Abstract
OBJECTIVES: As patient care becomes more collaborative in nature, there is a need for information technology that supports interdisciplinary practices of care. This study developed and performed usability testing of a standalone computer-based information tool to support the interdisciplinary practice of palliative severe pain management (SPM). DESIGN: A grounded theory- participatory design (GT-PD) approach was used with three distinct palliative data sources to obtain and understand user requirements for SPM practice and how a computer-based information tool could be designed to support those requirements. RESULTS: The GT-PD concepts and categories provided a rich perspective of palliative SPM and the process and information support required for different SPM tasks. A conceptual framework consisting of an ontology and a set of three problem-solving methods was developed to reconcile the requirements of different interdisciplinary team members. The conceptual framework was then implemented as a prototype computer-based information tool that has different modes of use to support both day-to-day case management and education of palliative SPM. Usability testing of the computer tool was performed, and the tool tested favorably in a laboratory setting. CONCLUSION: An interdisciplinary computer-based information tool can be developed to support the different work practices and information needs of interdisciplinary team members, but explicit requirements must be sought from all prospective users of such a tool. Qualitative methods such as the hybrid GT-PD approach used in this research are particularly helpful for articulating computer tool design requirements.
The American journal of hospice & palliative care, Apr-May 2008, vol. 25, no. 2,
Palliative care in overdrive: patients in danger.
The American journal of hospice & palliative care, Apr-May 2008, vol. 25, no. 2,
p. 155-60
Craig-Gillian.
Prediction of patient survival by healthcare professionals in a specialist palliative care inpatient unit: a prospective study.
p. 139-45
Twomey-Feargal, O-Leary-Norma, O-Brien-Tony.
Abstract
Accurate prognostication is an enormous challenge for professionals caring for patients with advanced disease. Few studies have compared the prognostic accuracy of different professional groups within a hospice setting. The aim of this study was to compare the ability of 5 professional groups to estimate the survival of patients admitted to a specialist palliative care unit. No group accurately predicted the length of patient survival more than 50% of the time. Nursing and junior medical staff were most accurate while care assistants were least accurate. When in error, senior clinical staff tended to under- estimate survival. Independent mobility on admission was the only variable predictive of length of survival. Thus, professional groups differ in their prognostic accuracy. An awareness of a group's propensity to over- or under-estimate prognosis should be incorporated into future work on prognostication models.
Some common problems faced by hospice palliative care volunteers.
p. 121-6
Claxton-Oldfield-Stephen, Claxton-Oldfield-Jane.
Abstract
This paper examines 4 common problems that many hospice palliative care volunteers in Canada (and the United States) encounter, namely, being underutilized, being placed with a patient too late in the patient's illness, feeling undervalued by some members of the medical staff, and not being able to do more to help patients and their families. The implications of each of these problems are discussed along with suggestions for overcoming them. Finally, some ideas for future research are proposed.
Pediatric palliative care: an assessment of physicians' confidence in skills, desire for training, and willingness to refer for end-of-life care.
p. 100-5
Sheetz-M-Joan, Bowman-Mary-Ann-Sontag.
Abstract
This study determines the confidence levels of physicians in providing components of pediatric palliative care and identifies their willingness to obtain training and to make palliative care referrals. Surveys were mailed to all physicians at Primary Children's Medical Center. The survey instrument includes 3 demographic items, 9 items designed to assess physician confidence in core palliative care skills, and 4 items designed to assess what steps physicians would be likely to take to assure that patients receive palliative care. Physicians were asked to rate their confidence levels to provide palliative care components on a 4-point scale for each of the items. Five hundred ninety-seven surveys were mailed, with 323 usable surveys returned. The proportion of physicians who rate their ability to provide palliative care as confident or very confident ranges from 74% for giving difficult news to families to 23% for managing end-of-life symptoms. Thirty-six percent of the physicians say they would be likely or very likely to attend training to improve their ability to provide palliative care to children. Eighty-six percent would be likely or very likely to refer for a palliative care consult and 91% to a home health agency or hospice. There is wide variation in the confidence levels of physicians to provide the core components of palliative care. Few are interested in obtaining additional training, but most are willing to obtain consultation or to refer to a palliative care service. These results argue in favor of hospital-based palliative care teams and for specialty training and certification in pediatric palliative care.
End-of-life care in Hancock County, Maine: a community snapshot.
p. 132-8
Ostertag-Susan-G, Forman-Walter-B.
Abstract
This study presents a model for identifying end-of-life concerns in 1 rural community: Hancock County, Maine. Focus groups and structured interviews were held with primary care physicians, hospice staffs, clergy, hospice board members, long-term care facility staffs, and families of patients who had died either with or without hospice services. A list of suggestions for action within the community was generated from the interviews. Specific ideas targeted for implementation as a result of this project were educational sessions for long-term care facility staff, hospital grand rounds for primary care physicians, collaboration to bring information to the general public, stronger liaisons between long-term care facility and hospice staffs, and investigation of the development of a dedicated hospice facility. This is a simple, easily accomplished model to evaluate hospice needs in a small community.
Use of thromboprophylaxis in palliative care patients: a survey among experts in palliative care, oncology, intensive care, and anticoagulation.
p. 127-31
Kierner-Katharina-A, Gartner-Verena, Schwarz-Maria, Watzke-Herbert-H.
Abstract
Study-based guidelines on thromboprophylaxis are not available for palliative care patients. The authors asked a panel of academic medical experts in palliative care, oncology, blood coagulation, and intensive care to select a prophylactic regimen out of 5 predefined options for a virtual patient with advanced bronchial cancer in different clinical settings. Primary prophylaxis for venous thromboembolism was withdrawn by all physicians when the patient had a Karnovsky's index of 10 and was described as dying. It was given by 25% of physicians when the patient had a Karnovsky's index of 20 and by 85% when Karnovsky's index 40 was still 40. Similar results were obtained in the situation of secondary prophylaxis of venous thromboembolism and when the patient was described as having a history of chronic atrial fibrillation. This data clearly show that thromboprophylaxis is delivered according to a compound estimate of risks and benefits of such prophylaxis in a specific palliative care situation.
To die, to sleep: US physicians' religious and other objections to physician-assisted suicide, terminal sedation, and withdrawal of life support.
p. 112-20
Curlin-Farr-A, Nwodim-Chinyere, Vance-Jennifer-L, Chin-Marshall-H, Lantos-John-D.
Abstract
This study analyzes data from a national survey to estimate the proportion of physicians who currently object to physician-assisted suicide (PAS), terminal sedation (TS), and withdrawal of artificial life support (WLS), and to examine associations between such objections and physician ethnicity, religious characteristics, and experience caring for dying patients. Overall, 69% of the US physicians object to PAS, 18% to TS, and 5% to WLS. Highly religious physicians are more likely than those with low religiosity to object to both PAS (84% vs 55%, P < .001) and TS (25% vs 12%, P < .001). Objection to PAS or TS is also associated with being of Asian ethnicity, of Hindu religious affiliation, and having more experience caring for dying patients. These findings suggest that, with respect to morally contested interventions at the end of life, the medical care patients receive will vary based on their physicians' religious characteristics, ethnicity, and experience caring for dying patients.
p. 88-92,
What bothers you the most? Initial responses from patients receiving palliative care consultation
Shah-Mindy, Quill-Timothy, Norton-Sally, Sada-Yvonne, Buckley-Marcia, Fridd-Charlotte. Abstract
The purpose of this investigation is to describe how hospitalized palliative care patients respond to the question What bothers you the most? at the time of initial consultation. A retrospective descriptive content analysis of first person responses routinely recorded during initial interview (n = 286) was carried out. Responses were grouped in 7 major categories: physical distress (44%) ; emotional, spiritual, existential, or nonspecific distress (16%); relationships (15%); concerns about the dying process and death (15%) ; loss of function and normalcy (12%); distress about location (11%); and distress with medical providers or treatment (9%). Fifteen percent of responses were unable to be reliably categorized. Although many of our patients were not able to answer open-ended questions because of illness, those who did shared a wide range of concerns that provided a starting point for clinical prioritization. Further research into the use of such simple questions at time of initial consultation is warranted.
p. 93-9
Lullament: lullaby and lament therapeutic qualities actualized through music therapy
O-Callaghan-Clare.
Abstract
Lullabies and laments promote new awareness, enculturation, adaptation, and grief expression. These concepts' relevance to palliative care, however, has not been examined. In this study, a music therapist used a grounded theory-informed design to reflexively analyze lullaby and lament qualities, evident in more than 20 years of personal palliative care practice. Thus, the construct lullament emerged, which signified helpful moments when patients' and families' personal and sociohistorical relationship with lullabies and laments were actualized. Specific music could be both a lullaby and a lament. A music therapist can enable the lullament through providing opportunities for music-contextualized restorative resounding, expressed psychobiologically, verbally, musically, and metaphorically.
p. 106-11
Needs of elderly patients in palliative care
Wijk-Helle, Grimby-Agneta.
Abstract
A pilot study on elderly patients' end-of-life needs was performed at a Swedish geriatric palliative ward. Thirty patients (15 men and 15 women; mean age, 79 years) with a primary diagnosis of cancer and admitted for palliative care were interviewed by a nurse using semistructured interviews. The study included demographic data, physical and psychologic status, and naming and ranking of individual needs. Elimination of physical pain was ranked as the primary need of half of the patients. Only when pain was eliminated or absent did other important needs (psychological, social, spiritual) appear frequently.
The American journal of hospice & palliative care, Apr-May 2008, vol. 25, no. 2,
p. 155-60
Craig-Gillian.
Prediction of patient survival by healthcare professionals in a specialist palliative care inpatient unit: a prospective study.
p. 139-45
Twomey-Feargal, O-Leary-Norma, O-Brien-Tony.
Abstract
Accurate prognostication is an enormous challenge for professionals caring for patients with advanced disease. Few studies have compared the prognostic accuracy of different professional groups within a hospice setting. The aim of this study was to compare the ability of 5 professional groups to estimate the survival of patients admitted to a specialist palliative care unit. No group accurately predicted the length of patient survival more than 50% of the time. Nursing and junior medical staff were most accurate while care assistants were least accurate. When in error, senior clinical staff tended to under- estimate survival. Independent mobility on admission was the only variable predictive of length of survival. Thus, professional groups differ in their prognostic accuracy. An awareness of a group's propensity to over- or under-estimate prognosis should be incorporated into future work on prognostication models.
Some common problems faced by hospice palliative care volunteers.
p. 121-6
Claxton-Oldfield-Stephen, Claxton-Oldfield-Jane.
Abstract
This paper examines 4 common problems that many hospice palliative care volunteers in Canada (and the United States) encounter, namely, being underutilized, being placed with a patient too late in the patient's illness, feeling undervalued by some members of the medical staff, and not being able to do more to help patients and their families. The implications of each of these problems are discussed along with suggestions for overcoming them. Finally, some ideas for future research are proposed.
Pediatric palliative care: an assessment of physicians' confidence in skills, desire for training, and willingness to refer for end-of-life care.
p. 100-5
Sheetz-M-Joan, Bowman-Mary-Ann-Sontag.
Abstract
This study determines the confidence levels of physicians in providing components of pediatric palliative care and identifies their willingness to obtain training and to make palliative care referrals. Surveys were mailed to all physicians at Primary Children's Medical Center. The survey instrument includes 3 demographic items, 9 items designed to assess physician confidence in core palliative care skills, and 4 items designed to assess what steps physicians would be likely to take to assure that patients receive palliative care. Physicians were asked to rate their confidence levels to provide palliative care components on a 4-point scale for each of the items. Five hundred ninety-seven surveys were mailed, with 323 usable surveys returned. The proportion of physicians who rate their ability to provide palliative care as confident or very confident ranges from 74% for giving difficult news to families to 23% for managing end-of-life symptoms. Thirty-six percent of the physicians say they would be likely or very likely to attend training to improve their ability to provide palliative care to children. Eighty-six percent would be likely or very likely to refer for a palliative care consult and 91% to a home health agency or hospice. There is wide variation in the confidence levels of physicians to provide the core components of palliative care. Few are interested in obtaining additional training, but most are willing to obtain consultation or to refer to a palliative care service. These results argue in favor of hospital-based palliative care teams and for specialty training and certification in pediatric palliative care.
End-of-life care in Hancock County, Maine: a community snapshot.
p. 132-8
Ostertag-Susan-G, Forman-Walter-B.
Abstract
This study presents a model for identifying end-of-life concerns in 1 rural community: Hancock County, Maine. Focus groups and structured interviews were held with primary care physicians, hospice staffs, clergy, hospice board members, long-term care facility staffs, and families of patients who had died either with or without hospice services. A list of suggestions for action within the community was generated from the interviews. Specific ideas targeted for implementation as a result of this project were educational sessions for long-term care facility staff, hospital grand rounds for primary care physicians, collaboration to bring information to the general public, stronger liaisons between long-term care facility and hospice staffs, and investigation of the development of a dedicated hospice facility. This is a simple, easily accomplished model to evaluate hospice needs in a small community.
Use of thromboprophylaxis in palliative care patients: a survey among experts in palliative care, oncology, intensive care, and anticoagulation.
p. 127-31
Kierner-Katharina-A, Gartner-Verena, Schwarz-Maria, Watzke-Herbert-H.
Abstract
Study-based guidelines on thromboprophylaxis are not available for palliative care patients. The authors asked a panel of academic medical experts in palliative care, oncology, blood coagulation, and intensive care to select a prophylactic regimen out of 5 predefined options for a virtual patient with advanced bronchial cancer in different clinical settings. Primary prophylaxis for venous thromboembolism was withdrawn by all physicians when the patient had a Karnovsky's index of 10 and was described as dying. It was given by 25% of physicians when the patient had a Karnovsky's index of 20 and by 85% when Karnovsky's index 40 was still 40. Similar results were obtained in the situation of secondary prophylaxis of venous thromboembolism and when the patient was described as having a history of chronic atrial fibrillation. This data clearly show that thromboprophylaxis is delivered according to a compound estimate of risks and benefits of such prophylaxis in a specific palliative care situation.
To die, to sleep: US physicians' religious and other objections to physician-assisted suicide, terminal sedation, and withdrawal of life support.
p. 112-20
Curlin-Farr-A, Nwodim-Chinyere, Vance-Jennifer-L, Chin-Marshall-H, Lantos-John-D.
Abstract
This study analyzes data from a national survey to estimate the proportion of physicians who currently object to physician-assisted suicide (PAS), terminal sedation (TS), and withdrawal of artificial life support (WLS), and to examine associations between such objections and physician ethnicity, religious characteristics, and experience caring for dying patients. Overall, 69% of the US physicians object to PAS, 18% to TS, and 5% to WLS. Highly religious physicians are more likely than those with low religiosity to object to both PAS (84% vs 55%, P < .001) and TS (25% vs 12%, P < .001). Objection to PAS or TS is also associated with being of Asian ethnicity, of Hindu religious affiliation, and having more experience caring for dying patients. These findings suggest that, with respect to morally contested interventions at the end of life, the medical care patients receive will vary based on their physicians' religious characteristics, ethnicity, and experience caring for dying patients.
p. 88-92,
What bothers you the most? Initial responses from patients receiving palliative care consultation
Shah-Mindy, Quill-Timothy, Norton-Sally, Sada-Yvonne, Buckley-Marcia, Fridd-Charlotte. Abstract
The purpose of this investigation is to describe how hospitalized palliative care patients respond to the question What bothers you the most? at the time of initial consultation. A retrospective descriptive content analysis of first person responses routinely recorded during initial interview (n = 286) was carried out. Responses were grouped in 7 major categories: physical distress (44%) ; emotional, spiritual, existential, or nonspecific distress (16%); relationships (15%); concerns about the dying process and death (15%) ; loss of function and normalcy (12%); distress about location (11%); and distress with medical providers or treatment (9%). Fifteen percent of responses were unable to be reliably categorized. Although many of our patients were not able to answer open-ended questions because of illness, those who did shared a wide range of concerns that provided a starting point for clinical prioritization. Further research into the use of such simple questions at time of initial consultation is warranted.
p. 93-9
Lullament: lullaby and lament therapeutic qualities actualized through music therapy
O-Callaghan-Clare.
Abstract
Lullabies and laments promote new awareness, enculturation, adaptation, and grief expression. These concepts' relevance to palliative care, however, has not been examined. In this study, a music therapist used a grounded theory-informed design to reflexively analyze lullaby and lament qualities, evident in more than 20 years of personal palliative care practice. Thus, the construct lullament emerged, which signified helpful moments when patients' and families' personal and sociohistorical relationship with lullabies and laments were actualized. Specific music could be both a lullaby and a lament. A music therapist can enable the lullament through providing opportunities for music-contextualized restorative resounding, expressed psychobiologically, verbally, musically, and metaphorically.
p. 106-11
Needs of elderly patients in palliative care
Wijk-Helle, Grimby-Agneta.
Abstract
A pilot study on elderly patients' end-of-life needs was performed at a Swedish geriatric palliative ward. Thirty patients (15 men and 15 women; mean age, 79 years) with a primary diagnosis of cancer and admitted for palliative care were interviewed by a nurse using semistructured interviews. The study included demographic data, physical and psychologic status, and naming and ranking of individual needs. Elimination of physical pain was ranked as the primary need of half of the patients. Only when pain was eliminated or absent did other important needs (psychological, social, spiritual) appear frequently.
Transdermal and orally administered opioids
Clinical experience with transdermal and orally administered opioids in palliative care patients--a retrospective study.
Full text available at ProQuest
Japanese journal of clinical oncology, Apr 2007 (epub: 22 May 2007), vol. 37, no. 4, p. 302-9
Clemens-Katri-Elina, Klaschik-Eberhard.
Abstract
BACKGROUND: Transdermal fentanyl is a widely used opioid for the treatment of cancer pain. Simplicity of use and high patient compliance are the main advantages of this opioid. However, based on our clinical experience, transdermal fentanyl is often not efficacious in terminally ill palliative care patients. We thus retrospectively examined the pain management and need for opioid switching in cancer patients admitted to our palliative care unit. METHODS: Of 354 patients admitted to our palliative care unit from 2004 through 2005, 81 patients were pre-treated with transdermal fentanyl. Demographic and cancer-related data (diagnosis, symptoms, pain score on a numeric rating scale (NRS)), analgesic dose at admission and discharge were compared. Statistics: mean +/- SD, ANOVA, Wilcoxon's test was used for inter-group comparisons, significance P < 0.05, adjusted for multiple testing. Pain scores are given in median (range). RESULTS: Mean transdermal fentanyl dose at admission was 81.0 +/- 55.8 microg/h. In 79 patients transdermal fentanyl treatment was discontinued. In two patients, analgesic treatment according to WHO I provided sufficient pain relief. The other 77 patients were switched to other opioids: 33 patients to oral morphine and 44 to oral hydromorphone. In patients switched to morphine the dose at discharge (104.7 +/- 89.0 mg) was lower than at admission (165.5 mg morphine equivalence). In patients switched to hydromorphone the dose of 277.8 +/- 255.0 mg morphine equivalent was higher at discharge than at admission (218.2 +/- 131.4 mg morphine equivalence--considering an equianalgesic conversion ratio morphine: hydromorphone = 7.5: 1). Pain scores decreased significantly after opioid rotation (NRS at rest/on exertion: 4 (0-10)/7 (2-10) versus 1 (0-3)/2 (0-5); P < 0.001). CONCLUSIONS: In the patient group switched to morphine, sufficient pain relief was achieved by lower equianalgesic morphine doses, compared with the doses at admission. In the patient group switched to hydromorphone, higher equianalgesic morphine doses were needed at discharge, considering an equianalgesic conversion ratio of morphine: hydromorphone = 7.5: 1. Patients with far advanced cancer often suffer from sweating and cachexia, which may have negative effects on the absorption of transdermal fentanyl. Opioid switching to oral morphine or hydromorphone was well tolerated and proved to be an efficacious option for cancer pain treatment.
Full text available at ProQuest
Japanese journal of clinical oncology, Apr 2007 (epub: 22 May 2007), vol. 37, no. 4, p. 302-9
Clemens-Katri-Elina, Klaschik-Eberhard.
Abstract
BACKGROUND: Transdermal fentanyl is a widely used opioid for the treatment of cancer pain. Simplicity of use and high patient compliance are the main advantages of this opioid. However, based on our clinical experience, transdermal fentanyl is often not efficacious in terminally ill palliative care patients. We thus retrospectively examined the pain management and need for opioid switching in cancer patients admitted to our palliative care unit. METHODS: Of 354 patients admitted to our palliative care unit from 2004 through 2005, 81 patients were pre-treated with transdermal fentanyl. Demographic and cancer-related data (diagnosis, symptoms, pain score on a numeric rating scale (NRS)), analgesic dose at admission and discharge were compared. Statistics: mean +/- SD, ANOVA, Wilcoxon's test was used for inter-group comparisons, significance P < 0.05, adjusted for multiple testing. Pain scores are given in median (range). RESULTS: Mean transdermal fentanyl dose at admission was 81.0 +/- 55.8 microg/h. In 79 patients transdermal fentanyl treatment was discontinued. In two patients, analgesic treatment according to WHO I provided sufficient pain relief. The other 77 patients were switched to other opioids: 33 patients to oral morphine and 44 to oral hydromorphone. In patients switched to morphine the dose at discharge (104.7 +/- 89.0 mg) was lower than at admission (165.5 mg morphine equivalence). In patients switched to hydromorphone the dose of 277.8 +/- 255.0 mg morphine equivalent was higher at discharge than at admission (218.2 +/- 131.4 mg morphine equivalence--considering an equianalgesic conversion ratio morphine: hydromorphone = 7.5: 1). Pain scores decreased significantly after opioid rotation (NRS at rest/on exertion: 4 (0-10)/7 (2-10) versus 1 (0-3)/2 (0-5); P < 0.001). CONCLUSIONS: In the patient group switched to morphine, sufficient pain relief was achieved by lower equianalgesic morphine doses, compared with the doses at admission. In the patient group switched to hydromorphone, higher equianalgesic morphine doses were needed at discharge, considering an equianalgesic conversion ratio of morphine: hydromorphone = 7.5: 1. Patients with far advanced cancer often suffer from sweating and cachexia, which may have negative effects on the absorption of transdermal fentanyl. Opioid switching to oral morphine or hydromorphone was well tolerated and proved to be an efficacious option for cancer pain treatment.
Palliative care for patients with head and neck cancer
Experience of palliative care for patients with head and neck cancer through the eyes of next of kin.
Head & neck, Apr 2008, vol. 30, no. 4, p. 479-84
Ledeboer-Quirine-C-P, Offerman-Marinella-P-J et al
Abstract
BACKGROUND: Little is known about how palliative care is experienced by patients with head and neck cancer and their relatives. The aim of this retrospective study was to analyze this care from the point of view of surviving relatives. METHODS: Fifty-five surviving relatives of patients with head and neck cancer treated at our department were enrolled in this study. Forty-five returned a completed questionnaire. RESULTS: Medical treatment during the palliative stage was judged as sufficient in most cases, but was often felt to be intrusive. The majority of patients had more need for psychosocial and physical support. Contact between head and neck surgeon and patient was sufficient. Many relatives found information about the terminal stage unsatisfactory. CONCLUSION: Not all aspects of palliative care for head and neck patients are sufficient, and improvements are, in our setting, necessary, specifically within the psychosocial field. This supports the initiation of our Expert Center to improve quality of life in the palliative stage.
Head & neck, Apr 2008, vol. 30, no. 4, p. 479-84
Ledeboer-Quirine-C-P, Offerman-Marinella-P-J et al
Abstract
BACKGROUND: Little is known about how palliative care is experienced by patients with head and neck cancer and their relatives. The aim of this retrospective study was to analyze this care from the point of view of surviving relatives. METHODS: Fifty-five surviving relatives of patients with head and neck cancer treated at our department were enrolled in this study. Forty-five returned a completed questionnaire. RESULTS: Medical treatment during the palliative stage was judged as sufficient in most cases, but was often felt to be intrusive. The majority of patients had more need for psychosocial and physical support. Contact between head and neck surgeon and patient was sufficient. Many relatives found information about the terminal stage unsatisfactory. CONCLUSION: Not all aspects of palliative care for head and neck patients are sufficient, and improvements are, in our setting, necessary, specifically within the psychosocial field. This supports the initiation of our Expert Center to improve quality of life in the palliative stage.
Wednesday, 9 July 2008
Journal of pain and symptom management Apr 2008 vol. 35, no. 4
Bereaved family members' evaluation of hospice care: what factors influence overall satisfaction with services?
p. 365-71
Rhodes-Ramona-L, Mitchell-Susan-L, Miller-Susan-C, Connor-Stephen-R, Teno-Joan-M.
Abstract
As patients near the end of life, bereaved family members provide an important source of evaluation of the care they receive. A study was conducted to identify which processes of care were associated with greater satisfaction with hospice services from the perception of bereaved family members. A total of 116,974 surveys from 819 hospices in the United States were obtained via the 2005 Family Evaluation of Hospice Care, an online repository of surveys of bereaved family members' perceptions of the quality of hospice care maintained by the National Hospice and Palliative Care Organization. Overall satisfaction was dichotomized as excellent vs. other (very good, good, fair, and poor). Using multivariate logistic regression, the association between overall satisfaction and the individual item problem scores that compose the Family Evaluation of Hospice Care were examined. Bereaved family members were more likely to rate overall satisfaction with hospice services as excellent if they were regularly informed about their loved one's condition (adjusted odds ratio (AOR)=3.76, 95% confidence interval (CI)=3.61-3.91), they felt the hospice team provided the right amount of emotional support to them (AOR=2.21, 95% CI=2.07-2.38), they felt that the hospice team provided them with accurate information about the patient's medical treatment (AOR=2.16, 95% CI=2.06-2.27), and they could identify one nurse as being in charge of their loved one's care (AOR=2.02, CI=1.92-2.13). These four key processes of care appear to significantly influence an excellent rating of overall satisfaction with hospice care.
The potential role of zuclopenthixol acetate in the management of refractory hyperactive delirium at the end of life.
p. 336-9
Tarumi-Yoko, Watanabe-Sharon.
Case-Reports, Letter.
Clinical and economic impact of palliative care consultation.
p. 340-6
Hanson-Laura-C, Usher-Barbara, Spragens-Lynn, Bernard-Stephen.
Abstract
Palliative care consultation is the most common model of hospital- based services in the United States, but few studies examine the impact of this model. In a prospective study, we describe the impact of palliative care consultation on symptoms, treatment, and hospital costs. Patients receiving interdisciplinary palliative care consultations from 2002 to 2004 were approached for enrollment; 304 of 395 (77%) patients participated. Measures included diagnosis, treatment decisions, and symptom scores. To test impact on costs, a one-year subset of cases with lengths of stay >4 days (n=104) was compared to all available controls (n=1,813) matched on the 3Mtrade mark All Patients Refined Diagnosis Related Group, Version 20, and mortality risk scores. Half of the patients were younger than 65 years, 28% were African American, and 61% had cancer. Median Palliative Performance score was 20 (range, 10-100). Recommendations were implemented in 88% of cases; new do not resuscitate/do not intubate orders were written for 34% of patients, new comfort care orders for 44%, and 27% were referred for hospice care. Symptom scores improved from Day 1 to Day 3, with greatest improvement in pain (2.6-1.4, P<0.001). p="0.03).">50% hospital days with palliative care consultation. Palliative care consultation is followed by decisions to forego costly treatment and improved symptom scores, and earlier palliative care intervention results in greater cost-savings.
Screening for discomfort as the fifth vital sign using an electronic medical recording system: a feasibility study.
p. 430-6
Morita-Tatsuya, Fujimoto-Koji, Namba-Miki, Kiyohara-Emi et al
Abstract
Late referral to a specialized palliative care service hinders quality symptomatic management. The aim of this article is to describe the feasibility and clinical usefulness of screening for patient discomfort as the fifth vital sign using an electronic medical recording system to identify patients with undertreated physical symptoms. For the electronic medical recording system, all admitted patients received routine nurse assessment of discomfort (defined as any physical symptom) at every vital signs check using Item 2 of the Support Team Assessment Schedule Japanese version (STAS). All medically treated cancer patients admitted to seven oncology units were automatically screened at one-week intervals. Positive screening was defined as a STAS score of 2 or more at least two times during the previous week. For each patient identified by screening, a palliative care team reviewed the medical record and provided written recommendations when other treatments might improve the patient's physical symptoms. Of 629 patients screened, 87 (14%) initially met the positive screening criteria. Fifteen (17%) were false positive due to psychiatric symptoms without physical symptoms or due to misrecording. Of 72 cases with actual discomfort, 33 had already been referred to the palliative care team, 14 had received adequate palliative care as determined by the palliative care team, 14 had self-limiting transient discomfort, and one patient died before the screening day. In the remaining 10 cases (11% of symptomatic patients, 1.7% of all screened patients), the palliative care team recommended potentially useful interventions for symptom control; seven patients were referred to the palliative care team within one week. The time required for all screening processes was about 30 minutes per week. This experience demonstrates that screening for patient discomfort as the fifth vital sign using an electronic medical recording system can be successfully implemented and may be useful in facilitating early referral of distressing patients to the specialized palliative care service.
I will do it if it will help others: motivations among patients taking part in qualitative studies in palliative care.
p. 347-55
Gysels-Marjolein, Shipman-Cathy, Higginson-Irene-J.
Abstract
The aim of this study was to explore patients' and carers' preferences and expectations regarding their contribution to research in palliative care through the use of qualitative interviews. Data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. Both studies recorded the recruitment process, numbers of patients or carers accepting and declining, and the circumstances of interviews. Participants were asked about their motivation to participate in research. The data were analyzed by labeling patients' reflections on their motivations for participating in these studies and identifying themes. Analysis of the recruitment process revealed differential patterns in decline and acceptance of interviews by patients with different conditions and across settings. Among cancer patients, 21 /51 declined; the proportion with other conditions that declined was small, and was 0/10 for patients with motor neuron disease. Motivation to participate in the studies was related to (1) altruism, (2) gratitude and concerns about care, (3) the need to have somebody to talk to, and (4) the need for information or access to services. Palliative care patients and carers were capable of deciding whether to participate in interviews and negotiating how they wanted this to happen. This strengthens the argument for patients' autonomy in deciding whether to participate in research. Patients and carers have different motivations for participation, reflecting the heterogeneity of the palliative care population. This suggests a need for ethics committees to reconsider their views and widen their perspectives on the involvement of palliative care patients and carers in research.
The Schedule for Meaning in Life Evaluation (SMiLE): validation of a new instrument for meaning-in-life research.
p. 356-64
Fegg-Martin-J, Kramer-Mechtild, L-hoste-Sibylle, Borasio-Gian- Domenico.
Abstract
The Schedule for Meaning in Life Evaluation (SMiLE) is a respondent- generated instrument for the assessment of individual meaning in life (MiL). In the SMiLE, the respondents list three to seven areas that provide meaning to their lives before rating the current level of importance and satisfaction of each area. Indices of total weighting (IoW; range, 20-100), total satisfaction (IoS; range, 0-100), and total weighted satisfaction (IoWS; range, 0-100) are calculated. The objective of this study was to assess the feasibility, acceptability, and psychometric properties of this newly developed instrument in its German and English versions. A total of 599 students of the Ludwig- Maximilians University, Munich and the Royal College of Surgeons, Dublin, took part in the study (response rate, 95.4%). The mean IoW was 85.7+/-9.4, the mean IoS was 76.7+/-14.3, and the mean IoWS was 77.7+/-14.2. The instrument was neither distressing (1.3+/-1.9) nor time-consuming (1.9+/-1.9), as assessed by numeric rating scales (range, 0-10). Test-retest reliability of the IoWS was r=0.72 (P<0.001); 85.6% of all areas were listed again after a test-retest period of seven days. Convergent validity was demonstrated with the Purpose in Life test (r=0.48, P<0.001), the Self-Transcendence Scale (r=0.34, P<0.001), and a general numeric rating scale on MiL (r=0.53, P<0.001). There was no correlation of the SMiLE with the Idler Index of Religiosity. Preliminary data indicate good feasibility and acceptability of the SMiLE in palliative care patients. The psychometrics of the SMiLE are reported according to the recommendations of the Scientific Advisory Committee of the Medical Outcomes Trust. Descriptors MODELS-PSYCHOLOGICAL/*; PALLIATIVE-CARE/*PX (psychology); PSYCHOMETRICS/*MT (methods), *ST (standards); VALUE-OF-LIFE/*. ATTITUDE; HUMANS; PERSONAL-SATISFACTION; REPRODUCIBILITY-OF-RESULTS. Language English. Publication type Journal-Article, Research-Support-Non-US-Govt, Validation-Studies. Journal subset IM. Country of publisher United-States. Journal code 0008605836. Information provider NLM. Notes Publication model: Print-Electronic; Cited medium: Print; ISSN: Print. Publication year 2008. Publication date 20080400. Entry date Date created: 20080324 Date completed: 20080618. (COPYRIGHT BY National Library of Medicine, Bethesda MD, USA)
p. 365-71
Rhodes-Ramona-L, Mitchell-Susan-L, Miller-Susan-C, Connor-Stephen-R, Teno-Joan-M.
Abstract
As patients near the end of life, bereaved family members provide an important source of evaluation of the care they receive. A study was conducted to identify which processes of care were associated with greater satisfaction with hospice services from the perception of bereaved family members. A total of 116,974 surveys from 819 hospices in the United States were obtained via the 2005 Family Evaluation of Hospice Care, an online repository of surveys of bereaved family members' perceptions of the quality of hospice care maintained by the National Hospice and Palliative Care Organization. Overall satisfaction was dichotomized as excellent vs. other (very good, good, fair, and poor). Using multivariate logistic regression, the association between overall satisfaction and the individual item problem scores that compose the Family Evaluation of Hospice Care were examined. Bereaved family members were more likely to rate overall satisfaction with hospice services as excellent if they were regularly informed about their loved one's condition (adjusted odds ratio (AOR)=3.76, 95% confidence interval (CI)=3.61-3.91), they felt the hospice team provided the right amount of emotional support to them (AOR=2.21, 95% CI=2.07-2.38), they felt that the hospice team provided them with accurate information about the patient's medical treatment (AOR=2.16, 95% CI=2.06-2.27), and they could identify one nurse as being in charge of their loved one's care (AOR=2.02, CI=1.92-2.13). These four key processes of care appear to significantly influence an excellent rating of overall satisfaction with hospice care.
The potential role of zuclopenthixol acetate in the management of refractory hyperactive delirium at the end of life.
p. 336-9
Tarumi-Yoko, Watanabe-Sharon.
Case-Reports, Letter.
Clinical and economic impact of palliative care consultation.
p. 340-6
Hanson-Laura-C, Usher-Barbara, Spragens-Lynn, Bernard-Stephen.
Abstract
Palliative care consultation is the most common model of hospital- based services in the United States, but few studies examine the impact of this model. In a prospective study, we describe the impact of palliative care consultation on symptoms, treatment, and hospital costs. Patients receiving interdisciplinary palliative care consultations from 2002 to 2004 were approached for enrollment; 304 of 395 (77%) patients participated. Measures included diagnosis, treatment decisions, and symptom scores. To test impact on costs, a one-year subset of cases with lengths of stay >4 days (n=104) was compared to all available controls (n=1,813) matched on the 3Mtrade mark All Patients Refined Diagnosis Related Group, Version 20, and mortality risk scores. Half of the patients were younger than 65 years, 28% were African American, and 61% had cancer. Median Palliative Performance score was 20 (range, 10-100). Recommendations were implemented in 88% of cases; new do not resuscitate/do not intubate orders were written for 34% of patients, new comfort care orders for 44%, and 27% were referred for hospice care. Symptom scores improved from Day 1 to Day 3, with greatest improvement in pain (2.6-1.4, P<0.001). p="0.03).">50% hospital days with palliative care consultation. Palliative care consultation is followed by decisions to forego costly treatment and improved symptom scores, and earlier palliative care intervention results in greater cost-savings.
Screening for discomfort as the fifth vital sign using an electronic medical recording system: a feasibility study.
p. 430-6
Morita-Tatsuya, Fujimoto-Koji, Namba-Miki, Kiyohara-Emi et al
Abstract
Late referral to a specialized palliative care service hinders quality symptomatic management. The aim of this article is to describe the feasibility and clinical usefulness of screening for patient discomfort as the fifth vital sign using an electronic medical recording system to identify patients with undertreated physical symptoms. For the electronic medical recording system, all admitted patients received routine nurse assessment of discomfort (defined as any physical symptom) at every vital signs check using Item 2 of the Support Team Assessment Schedule Japanese version (STAS). All medically treated cancer patients admitted to seven oncology units were automatically screened at one-week intervals. Positive screening was defined as a STAS score of 2 or more at least two times during the previous week. For each patient identified by screening, a palliative care team reviewed the medical record and provided written recommendations when other treatments might improve the patient's physical symptoms. Of 629 patients screened, 87 (14%) initially met the positive screening criteria. Fifteen (17%) were false positive due to psychiatric symptoms without physical symptoms or due to misrecording. Of 72 cases with actual discomfort, 33 had already been referred to the palliative care team, 14 had received adequate palliative care as determined by the palliative care team, 14 had self-limiting transient discomfort, and one patient died before the screening day. In the remaining 10 cases (11% of symptomatic patients, 1.7% of all screened patients), the palliative care team recommended potentially useful interventions for symptom control; seven patients were referred to the palliative care team within one week. The time required for all screening processes was about 30 minutes per week. This experience demonstrates that screening for patient discomfort as the fifth vital sign using an electronic medical recording system can be successfully implemented and may be useful in facilitating early referral of distressing patients to the specialized palliative care service.
I will do it if it will help others: motivations among patients taking part in qualitative studies in palliative care.
p. 347-55
Gysels-Marjolein, Shipman-Cathy, Higginson-Irene-J.
Abstract
The aim of this study was to explore patients' and carers' preferences and expectations regarding their contribution to research in palliative care through the use of qualitative interviews. Data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. Both studies recorded the recruitment process, numbers of patients or carers accepting and declining, and the circumstances of interviews. Participants were asked about their motivation to participate in research. The data were analyzed by labeling patients' reflections on their motivations for participating in these studies and identifying themes. Analysis of the recruitment process revealed differential patterns in decline and acceptance of interviews by patients with different conditions and across settings. Among cancer patients, 21 /51 declined; the proportion with other conditions that declined was small, and was 0/10 for patients with motor neuron disease. Motivation to participate in the studies was related to (1) altruism, (2) gratitude and concerns about care, (3) the need to have somebody to talk to, and (4) the need for information or access to services. Palliative care patients and carers were capable of deciding whether to participate in interviews and negotiating how they wanted this to happen. This strengthens the argument for patients' autonomy in deciding whether to participate in research. Patients and carers have different motivations for participation, reflecting the heterogeneity of the palliative care population. This suggests a need for ethics committees to reconsider their views and widen their perspectives on the involvement of palliative care patients and carers in research.
The Schedule for Meaning in Life Evaluation (SMiLE): validation of a new instrument for meaning-in-life research.
p. 356-64
Fegg-Martin-J, Kramer-Mechtild, L-hoste-Sibylle, Borasio-Gian- Domenico.
Abstract
The Schedule for Meaning in Life Evaluation (SMiLE) is a respondent- generated instrument for the assessment of individual meaning in life (MiL). In the SMiLE, the respondents list three to seven areas that provide meaning to their lives before rating the current level of importance and satisfaction of each area. Indices of total weighting (IoW; range, 20-100), total satisfaction (IoS; range, 0-100), and total weighted satisfaction (IoWS; range, 0-100) are calculated. The objective of this study was to assess the feasibility, acceptability, and psychometric properties of this newly developed instrument in its German and English versions. A total of 599 students of the Ludwig- Maximilians University, Munich and the Royal College of Surgeons, Dublin, took part in the study (response rate, 95.4%). The mean IoW was 85.7+/-9.4, the mean IoS was 76.7+/-14.3, and the mean IoWS was 77.7+/-14.2. The instrument was neither distressing (1.3+/-1.9) nor time-consuming (1.9+/-1.9), as assessed by numeric rating scales (range, 0-10). Test-retest reliability of the IoWS was r=0.72 (P<0.001); 85.6% of all areas were listed again after a test-retest period of seven days. Convergent validity was demonstrated with the Purpose in Life test (r=0.48, P<0.001), the Self-Transcendence Scale (r=0.34, P<0.001), and a general numeric rating scale on MiL (r=0.53, P<0.001). There was no correlation of the SMiLE with the Idler Index of Religiosity. Preliminary data indicate good feasibility and acceptability of the SMiLE in palliative care patients. The psychometrics of the SMiLE are reported according to the recommendations of the Scientific Advisory Committee of the Medical Outcomes Trust. Descriptors MODELS-PSYCHOLOGICAL/*; PALLIATIVE-CARE/*PX (psychology); PSYCHOMETRICS/*MT (methods), *ST (standards); VALUE-OF-LIFE/*. ATTITUDE; HUMANS; PERSONAL-SATISFACTION; REPRODUCIBILITY-OF-RESULTS. Language English. Publication type Journal-Article, Research-Support-Non-US-Govt, Validation-Studies. Journal subset IM. Country of publisher United-States. Journal code 0008605836. Information provider NLM. Notes Publication model: Print-Electronic; Cited medium: Print; ISSN: Print. Publication year 2008. Publication date 20080400. Entry date Date created: 20080324 Date completed: 20080618. (COPYRIGHT BY National Library of Medicine, Bethesda MD, USA)
Skin cancer
Skin cancer: follow-up, rehabilitation, palliative and supportive care.
Journal of the German Society of Dermatology, Jun 2008, vol. 6, no. 6, p. 492-8; quiz 499
Ugurel-Selma, Enk-Alexander.
Abstract
Follow-up, rehabilitation and palliative/supportive care are essential parts of the care and treatment of skin cancer patients. This review provides an overview on the state of knowledge and recent developments in these three disciplines, hereby providing standard operating procedures for the dermatologist in the care of skin cancer patients. Especially in follow-up and supportive care, the results of recent clinical trials have led to significant changes in the standard of care. These new insights and their consequences are the special focus of this article.
Journal-Article, Review.
Journal of the German Society of Dermatology, Jun 2008, vol. 6, no. 6, p. 492-8; quiz 499
Ugurel-Selma, Enk-Alexander.
Abstract
Follow-up, rehabilitation and palliative/supportive care are essential parts of the care and treatment of skin cancer patients. This review provides an overview on the state of knowledge and recent developments in these three disciplines, hereby providing standard operating procedures for the dermatologist in the care of skin cancer patients. Especially in follow-up and supportive care, the results of recent clinical trials have led to significant changes in the standard of care. These new insights and their consequences are the special focus of this article.
Journal-Article, Review.
Palliative care and circumstances of dying in German ALS patients
Palliative care and circumstances of dying in German ALS patients using non-invasive ventilation.
Amyotrophic lateral sclerosis : official publication of the World Federation of Neurology Research Group on Motor Neuron Diseases,
Apr 2008, vol. 9, no. 2, p. 91-8
Kuehnlein-Peter, Kuebler-Andrea, Raubold-Sabine, Worrell-Marcia, Kurt-Anja et al
Abstract
Non-invasive ventilation (NIV) is known to improve quality of life and to prolong survival in amyotrophic lateral sclerosis (ALS) patients. However, little is known about the circumstances of dying in ventilated ALS patients. In the light of the debate on legalizing euthanasia it is important to provide empirical data about the process of dying in these patients. In a structured interview, 29 family caregivers of deceased ALS patients were asked about their own and the patient's attitude toward physician-assisted suicide (PAS) and euthanasia, circumstances of dying, and the use of palliative medication. Quantitative and qualitative content analysis was performed on the data. Non-recurring suicidal thoughts were reported by five patients. Three patients and seven relatives had thought about PAS. Seventeen caregivers described the patients' death as peaceful, while choking was reported in six bulbar patients. In final stages of dying, the general practitioner (GP) was involved in the treatment of 10 patients, with palliative medication including sedatives and opiates being administered in eight cases. In conclusion, in contrast to the Netherlands, where 20% of terminal ALS patients die from PAS or euthanasia, only a small minority of our patients seems to have thought about PAS. The legal situation in Germany (where euthanasia is illegal), a bias due to the selection of NIV patients as well as a high percentage of religious patients and those with good levels of social support from family and friends, might account for this. Most of our patients died peacefully at home from carbon dioxide narcosis, but choking was described in some bulbar patients. Thus, palliative care, especially the use of opiates, anxiolytics and sedatives should be optimized, and the involvement of GP should be strongly encouraged, especially in bulbar patients.
Amyotrophic lateral sclerosis : official publication of the World Federation of Neurology Research Group on Motor Neuron Diseases,
Apr 2008, vol. 9, no. 2, p. 91-8
Kuehnlein-Peter, Kuebler-Andrea, Raubold-Sabine, Worrell-Marcia, Kurt-Anja et al
Abstract
Non-invasive ventilation (NIV) is known to improve quality of life and to prolong survival in amyotrophic lateral sclerosis (ALS) patients. However, little is known about the circumstances of dying in ventilated ALS patients. In the light of the debate on legalizing euthanasia it is important to provide empirical data about the process of dying in these patients. In a structured interview, 29 family caregivers of deceased ALS patients were asked about their own and the patient's attitude toward physician-assisted suicide (PAS) and euthanasia, circumstances of dying, and the use of palliative medication. Quantitative and qualitative content analysis was performed on the data. Non-recurring suicidal thoughts were reported by five patients. Three patients and seven relatives had thought about PAS. Seventeen caregivers described the patients' death as peaceful, while choking was reported in six bulbar patients. In final stages of dying, the general practitioner (GP) was involved in the treatment of 10 patients, with palliative medication including sedatives and opiates being administered in eight cases. In conclusion, in contrast to the Netherlands, where 20% of terminal ALS patients die from PAS or euthanasia, only a small minority of our patients seems to have thought about PAS. The legal situation in Germany (where euthanasia is illegal), a bias due to the selection of NIV patients as well as a high percentage of religious patients and those with good levels of social support from family and friends, might account for this. Most of our patients died peacefully at home from carbon dioxide narcosis, but choking was described in some bulbar patients. Thus, palliative care, especially the use of opiates, anxiolytics and sedatives should be optimized, and the involvement of GP should be strongly encouraged, especially in bulbar patients.
Pain practice vol. 8, no. 3 May-Jun 2008
A decision analysis model to justify and approve off-label drug use in pain and palliative care.
p. 153-4
Diaz-James-H.
Comment, Editorial.
Comment on: Pain Pract. 2008 May-Jun; 8(3):157-63.
Off-label use of drugs in pain medicine and palliative care: an algorithm for the assessment of its safe and legal prescription.
p. 157-63
Verhagen-Constans-C, Niezink-Anne-G-H, Engels-Yvonne-Y et al
Abstract
Off-label medication use is common practice, particularly in difficult to treat patients who have already tried commonly accepted medication unsuccessfully. Health authorities try to regulate this practice to protect the patient's safety and to prevent over consumption of new and more expensive drugs. Justified off-label drug use requires a thorough assessment. Physicians, in cooperation with formulary committees, need tools to structure this assessment. The evaluation algorithm for off-label prescription we present here, to be used after identification of a planned off-label application, consists of four steps. Step 1 indicates the extent of the problem and the need for further investigation. Step 2 is the decisional process evaluating the necessity of off-label use in identified prescriptions and confirmation as to what extent it needs further investigation. In step 3, the scientific knowledge to support the proposed off-label use is gathered in a short or extensive evaluation trajectory. The short trajectory consists of assembling the information approved in other countries or in accepted guidelines and textbooks, whereas the extensive trajectory is necessary when the indication, route, or formulation is not approved nationally or internationally. Assessment needs to be based on a literature research on the clinical and pharmacological information of the product. Step 4 is the acceptance or rejection of the off-label use of the drug for the indication at hand. Those four steps need to be carefully documented. Treatment outcome will then be closely monitored, documented, and made available to professionals, thus allowing for regular update of recommendations. This algorithm can help formulary committees to develop a strategy for evaluating off- label prescriptions in well-defined conditions, and help healthcare providers to develop protocols and guidelines.
Comment
Comment in: Pain Pract. 2008 May-Jun; 8(3):153-4.
p. 153-4
Diaz-James-H.
Comment, Editorial.
Comment on: Pain Pract. 2008 May-Jun; 8(3):157-63.
Off-label use of drugs in pain medicine and palliative care: an algorithm for the assessment of its safe and legal prescription.
p. 157-63
Verhagen-Constans-C, Niezink-Anne-G-H, Engels-Yvonne-Y et al
Abstract
Off-label medication use is common practice, particularly in difficult to treat patients who have already tried commonly accepted medication unsuccessfully. Health authorities try to regulate this practice to protect the patient's safety and to prevent over consumption of new and more expensive drugs. Justified off-label drug use requires a thorough assessment. Physicians, in cooperation with formulary committees, need tools to structure this assessment. The evaluation algorithm for off-label prescription we present here, to be used after identification of a planned off-label application, consists of four steps. Step 1 indicates the extent of the problem and the need for further investigation. Step 2 is the decisional process evaluating the necessity of off-label use in identified prescriptions and confirmation as to what extent it needs further investigation. In step 3, the scientific knowledge to support the proposed off-label use is gathered in a short or extensive evaluation trajectory. The short trajectory consists of assembling the information approved in other countries or in accepted guidelines and textbooks, whereas the extensive trajectory is necessary when the indication, route, or formulation is not approved nationally or internationally. Assessment needs to be based on a literature research on the clinical and pharmacological information of the product. Step 4 is the acceptance or rejection of the off-label use of the drug for the indication at hand. Those four steps need to be carefully documented. Treatment outcome will then be closely monitored, documented, and made available to professionals, thus allowing for regular update of recommendations. This algorithm can help formulary committees to develop a strategy for evaluating off- label prescriptions in well-defined conditions, and help healthcare providers to develop protocols and guidelines.
Comment
Comment in: Pain Pract. 2008 May-Jun; 8(3):153-4.
Progress in Palliative Care 2008 ; VOL 16 ; PART 2
A retrospective analysis of dexamethasone use on a Canadian palliative care unit
Pilkey , J . ; Daeninck , P . J .
Page: 63-68
Search the Web:
[article] [author(s)]
Total parenteral nutrition for patients with advanced life - limiting cancer : decision - making in the face of conflicting evidence
Clay , A . S . ; Abernethy , A . P .
Page: 69-78
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[article] [author(s)]
Reflections on the introduction of an art group into the day unit of a specialist palliative care unit
Lawton , S
Page: 79-80
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[article] [author(s)]
Pilkey , J . ; Daeninck , P . J .
Page: 63-68
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[article] [author(s)]
Total parenteral nutrition for patients with advanced life - limiting cancer : decision - making in the face of conflicting evidence
Clay , A . S . ; Abernethy , A . P .
Page: 69-78
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[article] [author(s)]
Reflections on the introduction of an art group into the day unit of a specialist palliative care unit
Lawton , S
Page: 79-80
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[article] [author(s)]
International Journal of Palliative Nursing 2008 ; VOL 14 ; PART 5
Children's palliative care : `thinking outside the box'
Downing , J
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 212-213
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[article] [author(s)]
Student nurses' attitudes towards death and dying in south - east Iran
Iranmanesh , S . ; Savenstedt , S . ; Abbaszadeh , A .
2008 ; VOL 14 ; PART 5
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 214-219
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[article] [author(s)]
Living with a terminal illness : patient and family experiences of hospital end - of - life care
Spichiger , E
2008 ; VOL 14 ; PART 5
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 220-229
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[article] [author(s)]
Supporting children and families facing the death of a parent : part two
Kennedy , C . ; McIntyre , R . ; Worth , A . ; Hogg , R .
2008 ; VOL 14 ; PART 5
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 230-237
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[article] [author(s)]
Pain in elderly hospitalized cancer patients with bone metastases in Norway
Torvik , K . ; Holen , J . ; Kaasa , S . ; Kirkevold , O . ; Holtan , A . et al
2008 ; VOL 14 ; PART 5
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 238-247
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[article] [author(s)]
Transition to a Canadian paediatric hospice . Part one : planning a pilot study
Steele , R . ; Derman , S . ; Cadell , S . ; Davies , B . ; Siden , H . ; Straatman , L
2008 ; VOL 14 ; PART 5
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 248-256
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[article] [author(s)]
Downing , J
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 212-213
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[article] [author(s)]
Student nurses' attitudes towards death and dying in south - east Iran
Iranmanesh , S . ; Savenstedt , S . ; Abbaszadeh , A .
2008 ; VOL 14 ; PART 5
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 214-219
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[article] [author(s)]
Living with a terminal illness : patient and family experiences of hospital end - of - life care
Spichiger , E
2008 ; VOL 14 ; PART 5
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 220-229
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[article] [author(s)]
Supporting children and families facing the death of a parent : part two
Kennedy , C . ; McIntyre , R . ; Worth , A . ; Hogg , R .
2008 ; VOL 14 ; PART 5
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 230-237
Search the Web:
[article] [author(s)]
Pain in elderly hospitalized cancer patients with bone metastases in Norway
Torvik , K . ; Holen , J . ; Kaasa , S . ; Kirkevold , O . ; Holtan , A . et al
2008 ; VOL 14 ; PART 5
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 238-247
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[article] [author(s)]
Transition to a Canadian paediatric hospice . Part one : planning a pilot study
Steele , R . ; Derman , S . ; Cadell , S . ; Davies , B . ; Siden , H . ; Straatman , L
2008 ; VOL 14 ; PART 5
From EBSCO ( CINAHL with Full Text ) - via Athens
Page: 248-256
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Thursday, 26 June 2008
Late follow-up of patients who underwent palliation for complex congenital heart disease in childhood.
Late follow-up of patients who underwent palliation for complex congenital heart disease in childhood.
Congenital heart disease, Mar 2008, vol. 3, no. 2, p. 155-8
Hoffmann-Andreas, Wyler-Felix, Guenthard-Joelle, Graedel-Erich.
Abstract
We report on a series of 12 patients with complex congenital heart disease who had reached adult life after surgical palliation in early childhood and who were systematically followed by clinical visits. Patients were born between 1953 and 1979 and were followed up into 2007. All patients had complex lesions with single ventricle physiology and were palliated either by banding of the pulmonary artery or by creation of systemic-pulmonary shunts. Single operations were performed in 4 cases, and 8 patients had 1 or more further palliative interventions. Late corrective surgery and heart transplantation were performed in 1 patient each. Eight survivors reached a mean age of 36 years at follow-up (range 28-48), whereas 4 patients died at a mean age of 32 years (range 22-53). All patients were in New York Heart Association classes II and III. Complications during follow-up were bacterial endocarditis (3), cerebrovascular accidents (3), arrhythmias (3), need for pacemakers (2). Deaths occurred perioperatively at transplant (1), or were caused by sudden death (2), and hypoxia related to fall in blood pressure (1). Successful pregnancies occurred in 3 patients with healthy (small) babies delivered by cesarean section in 2 of them, and vaginal delivery in 1. The course of life in these patients shows not only a wide spectrum with good quality of life in some of them but also a large number of potentially severe complications. Survival beyond 50 years is rare.
Congenital heart disease, Mar 2008, vol. 3, no. 2, p. 155-8
Hoffmann-Andreas, Wyler-Felix, Guenthard-Joelle, Graedel-Erich.
Abstract
We report on a series of 12 patients with complex congenital heart disease who had reached adult life after surgical palliation in early childhood and who were systematically followed by clinical visits. Patients were born between 1953 and 1979 and were followed up into 2007. All patients had complex lesions with single ventricle physiology and were palliated either by banding of the pulmonary artery or by creation of systemic-pulmonary shunts. Single operations were performed in 4 cases, and 8 patients had 1 or more further palliative interventions. Late corrective surgery and heart transplantation were performed in 1 patient each. Eight survivors reached a mean age of 36 years at follow-up (range 28-48), whereas 4 patients died at a mean age of 32 years (range 22-53). All patients were in New York Heart Association classes II and III. Complications during follow-up were bacterial endocarditis (3), cerebrovascular accidents (3), arrhythmias (3), need for pacemakers (2). Deaths occurred perioperatively at transplant (1), or were caused by sudden death (2), and hypoxia related to fall in blood pressure (1). Successful pregnancies occurred in 3 patients with healthy (small) babies delivered by cesarean section in 2 of them, and vaginal delivery in 1. The course of life in these patients shows not only a wide spectrum with good quality of life in some of them but also a large number of potentially severe complications. Survival beyond 50 years is rare.
Aggressiveness of cancer-care near the end-of-life in Korea.
Aggressiveness of cancer-care near the end-of-life in Korea.
Japanese journal of clinical oncology, May 2008 (epub: 14 Apr 2008), vol. 38, no. 5, p. 381-6, Keam-Bhumsuk, Oh-Do-Youn, Lee-Se-Hoon, Kim-Dong-Wan et al
Abstract
OBJECTIVE: The aim of this study was to examine the appropriateness of chemotherapy and care in Korean cancer patients near the end-of- life. METHODS: We designed a retrospective cohort composed of patients diagnosed as having metastatic cancer and who received palliative chemotherapy at Seoul National University Hospital in 2002. Two hundred and ninety-eight patients who died of cancer were evaluated in terms of the appropriateness of the cancer-care they received, including chemotherapy. RESULTS: Median duration of chemotherapy was 6.02 months compared with 8.67 months for median overall survival. The median period between last chemotherapy and death was 2.02 months. Of the 298 patients, 50.3% received chemotherapy during the last 2 months of life. Furthermore, 17 patients (5.7%) died within 2 weeks after receiving chemotherapy. The proportion who visited an emergency room (ER) more than once during the last months of life was 33.6%, and the average number of ER visits after a diagnosis of cancer was 1.72. Only 9.1% of patients were referred to a hospice consultation service and only 11.7% of patients agreed with written DNR. CONCLUSIONS: Among patients who died of cancer, significant proportions were found to have received chemotherapy up to the end-of-life and to have visited ERs. Hospice referrals and discussions about DNR were not conducted well during the end-of-life period in Korea.
Japanese journal of clinical oncology, May 2008 (epub: 14 Apr 2008), vol. 38, no. 5, p. 381-6, Keam-Bhumsuk, Oh-Do-Youn, Lee-Se-Hoon, Kim-Dong-Wan et al
Abstract
OBJECTIVE: The aim of this study was to examine the appropriateness of chemotherapy and care in Korean cancer patients near the end-of- life. METHODS: We designed a retrospective cohort composed of patients diagnosed as having metastatic cancer and who received palliative chemotherapy at Seoul National University Hospital in 2002. Two hundred and ninety-eight patients who died of cancer were evaluated in terms of the appropriateness of the cancer-care they received, including chemotherapy. RESULTS: Median duration of chemotherapy was 6.02 months compared with 8.67 months for median overall survival. The median period between last chemotherapy and death was 2.02 months. Of the 298 patients, 50.3% received chemotherapy during the last 2 months of life. Furthermore, 17 patients (5.7%) died within 2 weeks after receiving chemotherapy. The proportion who visited an emergency room (ER) more than once during the last months of life was 33.6%, and the average number of ER visits after a diagnosis of cancer was 1.72. Only 9.1% of patients were referred to a hospice consultation service and only 11.7% of patients agreed with written DNR. CONCLUSIONS: Among patients who died of cancer, significant proportions were found to have received chemotherapy up to the end-of-life and to have visited ERs. Hospice referrals and discussions about DNR were not conducted well during the end-of-life period in Korea.
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