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Trends in End-of-Life Care in Pediatric Hematology, Oncology, and Stem Cell Transplant Patients (FR441A)
Vol. 51 No. 2 February 2016
Schedule with Abstracts
Specific roles that fathers adopted to varying degrees were identified: Protector, Provider for Family, Partner in Shared Decision-Making, and Emotional Supporter of Mother. The degree to which fathers engaged with the experience of the pregnancy, including the loss, impacted the development of a shared emotional experience for the couple, which influenced the outcome of the relationship.
Conclusion. There are several unique features to the experience of fathers in pregnancies with a lethal fetal condition, and there are several distinct roles that fathers play in their relationships with the fetus, baby, and mother.
Implications for Research, Policy, and Practice. Understanding the factors involved in a father’s experience of LFD can help obstetrical and palliative care providers better support couples through the experience and aftermath of such a devastating loss, promoting relationship survival and even relationship growth.
Outpatient Pediatric Palliative Medicine: Complex Lives, Comprehensive Services (FR440D) Rachel Vandermeer, MD, University of Texas Health Science Center at San Antonio, San Antonio, TX. Glen Medellin, MD, University of Texas Health Science Center at San Antonio, San Antonio, TX. Sandra Sanchez-Reilly, MD FAAHPM, University of Texas Health Science Center at San Antonio, San Antonio, TX. Jennifer Healy, DO, University of Texas Health Science Center at San Antonio, San Antonio, TX. Objectives Identify the diagnoses and death rate found in an outpatient pediatric palliative care clinic. Describe the technology and community supports used by children with medical complexity and incurable illness. Original Research Background. Pediatric palliative services nationwide enroll children with life-limiting, but not acutely life threatening chronic illness. Children receiving inpatient palliative services, the most prevalent service delivery model, have a survival rate of nearly 75% at one year. In response to the long survival rate of pediatric palliative care patients and the need for outpatient palliative services, University Health System (UHS) developed a medical home clinic that provides integrated palliative and primary care for children with medical complexity or incurable illness.
Research Objectives. To discuss the demographics and characteristics of a comprehensive outpatient pediatric palliative care clinic.
363
Methods. A retrospective chart review was performed for all patients seen in the UHS Comprehensive Care Clinic (UHS CCC) between September 2013 and February 2015. The main endpoints are predominant diagnoses categories, technology supports, community supports and death rate.
Results. In a 1.5 year period, the UHS CCC performed 2338 visits for 359 enrolled children, which averages out to 4.3 visits per patient per year. Sixty-six percent used a gastrostomy for nutrition, 25% had tracheostomy, 30.3% required ventilator support, and 56.9% received home health nursing. The death rate for this clinic population is 4.3 deaths per 100 patients per year. 4.8% were enrolled in concurrent hospice at some point over the study period. The breakdown of diagnoses is: 41.5% neuromuscular, 33.5% congenital, 5.9% cardiovascular, 5.3% oncologic, 4.3% gastrointestinal, 1.6% respiratory, and 8% other.
Conclusion. This demographic study describes the high complexity of outpatients receiving care in an outpatient pediatric palliative care clinic. The outpatient pediatric palliative population is dependent on both technology and community professionals. The death rate requires supporting patients at end of life.
Implications for Research, Policy, and Practice. Caring for palliative care children in the outpatient setting requires not only expertise in endof-life care, but also in management of complex chronic conditions and primary care needs.
Trends in End-of-Life Care in Pediatric Hematology, Oncology, and Stem Cell Transplant Patients (FR441A) Katharine Brock, MD, Harvard University, Boston, MA. Clare Twist, MD, Stanford University, Stanford, CA. Angela Steineck, MD, Stanford University, Stanford, CA. Objectives Identify groups of patients in pediatric hematology/oncology/stem cell transplant who receive fewer palliative care and hospice services at the end of life. State which palliative care services and trends have improved over time in pediatric hematology/oncology/stem cell transplant patients studied at our single tertiary-care institution. Original Research Background. Early discussion of goals of care, including introduction of palliative care, increases patient/family satisfaction and improves quality of life. Oncology and pediatric societies advocate for palliative care in all patients with life-threatening, complex illness, specifically cancer. Decisions about end-of-life care may be influenced by cultural
364
Schedule with Abstracts
and disease-specific features, and it may be changing over time. Research Objectives. To evaluate associations of demographic variables (diagnosis, race, religion, language) with end-of-life characteristics (Phase I enrollment, Do-Not-Resuscitate (DNR) status, hospice utilization, location of death), and trends in palliative care services delivered to pediatric hematology, oncology, and stem cell transplant (SCT) patients. Methods. In this single-center retrospective cohort study, inclusion criteria were patients aged 0-35 who died between January 1, 2002 and March 1, 2014 who had been cared for in the pediatric hematology, oncology, and SCT divisions. Univariate and multivariate models were used to evaluate associations. The era of 2002-2014 was divided into quartiles to assess trends over time. Results. Of the 445 included patients, 64% of patients had relapsed, 45% were enrolled in hospice, and 16% had received a palliative care consultation. Patients who had brain or solid tumors enrolled in hospice (p<0.0001) and died at home more frequently than patients with leukemia/lymphoma (p<0.0001). Patients who received Phase I therapy or identified as Christian/Catholic religion enrolled in hospice more frequently (p<0.0001 and p¼0.03, respectively). When patient deaths were analyzed over quartiles, the frequency of DNR orders (p¼0.02), and palliative care consultation (p¼0.04) increased over time. Hospice enrollment, location of death, and Phase I trial enrollment did not significantly change. Conclusion. Despite increases in palliative care consultation and DNR orders over time, utilization remains suboptimal. No increase in hospice enrollment or shift in death location was observed.
Implications for Research, Policy, and Practice. These data will help target future initiatives to achieve earlier discussions of goals of care and improved palliative care for all patients.
Vol. 51 No. 2 February 2016
Original Research Background. Cancer cachexia is associated with poor quality of life, increased cancer treatment morbidity, and reduced survival. Accurate assessment enables appropriate nutritional intervention. Multiple barriers to cachexia assessment exist in the palliative setting. Research Objectives. The aim of this study was to examine current practice in a specialist palliative care unit (SPCU) and whether cachexia is accurately assessed, based on the international consensus definition of cancer cachexia (Fearon et al. Definition and classification of cancer cachexia: an international consensus. Lancet Oncol 2011;12:489-495). Methods. Unified healthcare records of consecutive cancer admissions to the SPCU from September 2014 to February 2015 were retrospectively reviewed. Documentation of anorexia, catabolic drivers (C-Reactive Protein; CRP), functional status (Palliative Performance Scale; PPS), weight and weight change was sought as per the 2011 consensus. The symptom subsection (13 questions) of the Patient-Generated Subjective Global Assessment (PG-SGA) was used as a validated tool to record symptoms. Outcome of admission (death/discharge) was recorded. Statistics were generated with Microsoft Excel. Results. 214 admissions were reviewed. Anorexia was documented in 68% (n¼135). Median CRP was 47.8mg/L (range:0.6-456 mg/L). Median PPS was 40% (range:10-80%). Weight was documented in 19% (n¼41). 13% (n¼27) were asked about weight change; 95% (n¼25) of them reported weight loss. Weight loss was quantified in eight cases. The word ‘‘cachectic’’ was applied to 47 admissions. Median number of symptoms was three (range:0-7 of 12 potential). 23% (n¼49) were discharged home. Conclusion. Nutritional assessment was neither comprehensive nor routine despite a high prevalence of abnormalities consistent with cachexia. Anorexia was common. Weight evaluation was infrequent. Symptom burden was high, and inflammatory markers were elevated.
Cancer Cachexia Assessment in a Specialist Palliative Care Inpatient Unit (FR441B)
Implications for Research, Policy, and Practice. Almost one quarter of patients were dis-
Cliona Lorton, MB, Our Lady’s Hospice and Care Services, Dublin, Ireland. Louise O’Halloran. Eimear Loftus, Student Trinity College, Dublin, Ireland. Shane Lyng Waterford, Trinity College, Dublin, Ireland. Declan Walsh, MD, Trinity College, Dublin, Ireland.
charged and might have benefited from intervention. Screening tools and education are needed to prompt recognition and appropriate management of cancer cachexia in the palliative care setting.
Objectives Name key considerations in the assessment of cachexia and application of these in a palliative care setting. Identify barriers to assessment of cachexia in palliative care and how these may be overcome.
Validation of Cancer Dyspnea Scale for Advanced Cancer Patients in a Tertiary Cancer Centre (FR441C) Anuja Damani, MD, Tata Memorial Center, Mumbai, Maharashtra, India. Arunangshu Ghoshal, MD, Tata Memorial Center, Mumbai, Maharashtra, India.
Schedule with Abstracts
Specific roles that fathers adopted to varying degrees were identified: Protector, Provider for Family, Partner in Shared Decision-Making, and Emotional Supporter of Mother. The degree to which fathers engaged with the experience of the pregnancy, including the loss, impacted the development of a shared emotional experience for the couple, which influenced the outcome of the relationship.
Conclusion. There are several unique features to the experience of fathers in pregnancies with a lethal fetal condition, and there are several distinct roles that fathers play in their relationships with the fetus, baby, and mother.
Implications for Research, Policy, and Practice. Understanding the factors involved in a father’s experience of LFD can help obstetrical and palliative care providers better support couples through the experience and aftermath of such a devastating loss, promoting relationship survival and even relationship growth.
Outpatient Pediatric Palliative Medicine: Complex Lives, Comprehensive Services (FR440D) Rachel Vandermeer, MD, University of Texas Health Science Center at San Antonio, San Antonio, TX. Glen Medellin, MD, University of Texas Health Science Center at San Antonio, San Antonio, TX. Sandra Sanchez-Reilly, MD FAAHPM, University of Texas Health Science Center at San Antonio, San Antonio, TX. Jennifer Healy, DO, University of Texas Health Science Center at San Antonio, San Antonio, TX. Objectives Identify the diagnoses and death rate found in an outpatient pediatric palliative care clinic. Describe the technology and community supports used by children with medical complexity and incurable illness. Original Research Background. Pediatric palliative services nationwide enroll children with life-limiting, but not acutely life threatening chronic illness. Children receiving inpatient palliative services, the most prevalent service delivery model, have a survival rate of nearly 75% at one year. In response to the long survival rate of pediatric palliative care patients and the need for outpatient palliative services, University Health System (UHS) developed a medical home clinic that provides integrated palliative and primary care for children with medical complexity or incurable illness.
Research Objectives. To discuss the demographics and characteristics of a comprehensive outpatient pediatric palliative care clinic.
363
Methods. A retrospective chart review was performed for all patients seen in the UHS Comprehensive Care Clinic (UHS CCC) between September 2013 and February 2015. The main endpoints are predominant diagnoses categories, technology supports, community supports and death rate.
Results. In a 1.5 year period, the UHS CCC performed 2338 visits for 359 enrolled children, which averages out to 4.3 visits per patient per year. Sixty-six percent used a gastrostomy for nutrition, 25% had tracheostomy, 30.3% required ventilator support, and 56.9% received home health nursing. The death rate for this clinic population is 4.3 deaths per 100 patients per year. 4.8% were enrolled in concurrent hospice at some point over the study period. The breakdown of diagnoses is: 41.5% neuromuscular, 33.5% congenital, 5.9% cardiovascular, 5.3% oncologic, 4.3% gastrointestinal, 1.6% respiratory, and 8% other.
Conclusion. This demographic study describes the high complexity of outpatients receiving care in an outpatient pediatric palliative care clinic. The outpatient pediatric palliative population is dependent on both technology and community professionals. The death rate requires supporting patients at end of life.
Implications for Research, Policy, and Practice. Caring for palliative care children in the outpatient setting requires not only expertise in endof-life care, but also in management of complex chronic conditions and primary care needs.
Trends in End-of-Life Care in Pediatric Hematology, Oncology, and Stem Cell Transplant Patients (FR441A) Katharine Brock, MD, Harvard University, Boston, MA. Clare Twist, MD, Stanford University, Stanford, CA. Angela Steineck, MD, Stanford University, Stanford, CA. Objectives Identify groups of patients in pediatric hematology/oncology/stem cell transplant who receive fewer palliative care and hospice services at the end of life. State which palliative care services and trends have improved over time in pediatric hematology/oncology/stem cell transplant patients studied at our single tertiary-care institution. Original Research Background. Early discussion of goals of care, including introduction of palliative care, increases patient/family satisfaction and improves quality of life. Oncology and pediatric societies advocate for palliative care in all patients with life-threatening, complex illness, specifically cancer. Decisions about end-of-life care may be influenced by cultural
364
Schedule with Abstracts
and disease-specific features, and it may be changing over time. Research Objectives. To evaluate associations of demographic variables (diagnosis, race, religion, language) with end-of-life characteristics (Phase I enrollment, Do-Not-Resuscitate (DNR) status, hospice utilization, location of death), and trends in palliative care services delivered to pediatric hematology, oncology, and stem cell transplant (SCT) patients. Methods. In this single-center retrospective cohort study, inclusion criteria were patients aged 0-35 who died between January 1, 2002 and March 1, 2014 who had been cared for in the pediatric hematology, oncology, and SCT divisions. Univariate and multivariate models were used to evaluate associations. The era of 2002-2014 was divided into quartiles to assess trends over time. Results. Of the 445 included patients, 64% of patients had relapsed, 45% were enrolled in hospice, and 16% had received a palliative care consultation. Patients who had brain or solid tumors enrolled in hospice (p<0.0001) and died at home more frequently than patients with leukemia/lymphoma (p<0.0001). Patients who received Phase I therapy or identified as Christian/Catholic religion enrolled in hospice more frequently (p<0.0001 and p¼0.03, respectively). When patient deaths were analyzed over quartiles, the frequency of DNR orders (p¼0.02), and palliative care consultation (p¼0.04) increased over time. Hospice enrollment, location of death, and Phase I trial enrollment did not significantly change. Conclusion. Despite increases in palliative care consultation and DNR orders over time, utilization remains suboptimal. No increase in hospice enrollment or shift in death location was observed.
Implications for Research, Policy, and Practice. These data will help target future initiatives to achieve earlier discussions of goals of care and improved palliative care for all patients.
Vol. 51 No. 2 February 2016
Original Research Background. Cancer cachexia is associated with poor quality of life, increased cancer treatment morbidity, and reduced survival. Accurate assessment enables appropriate nutritional intervention. Multiple barriers to cachexia assessment exist in the palliative setting. Research Objectives. The aim of this study was to examine current practice in a specialist palliative care unit (SPCU) and whether cachexia is accurately assessed, based on the international consensus definition of cancer cachexia (Fearon et al. Definition and classification of cancer cachexia: an international consensus. Lancet Oncol 2011;12:489-495). Methods. Unified healthcare records of consecutive cancer admissions to the SPCU from September 2014 to February 2015 were retrospectively reviewed. Documentation of anorexia, catabolic drivers (C-Reactive Protein; CRP), functional status (Palliative Performance Scale; PPS), weight and weight change was sought as per the 2011 consensus. The symptom subsection (13 questions) of the Patient-Generated Subjective Global Assessment (PG-SGA) was used as a validated tool to record symptoms. Outcome of admission (death/discharge) was recorded. Statistics were generated with Microsoft Excel. Results. 214 admissions were reviewed. Anorexia was documented in 68% (n¼135). Median CRP was 47.8mg/L (range:0.6-456 mg/L). Median PPS was 40% (range:10-80%). Weight was documented in 19% (n¼41). 13% (n¼27) were asked about weight change; 95% (n¼25) of them reported weight loss. Weight loss was quantified in eight cases. The word ‘‘cachectic’’ was applied to 47 admissions. Median number of symptoms was three (range:0-7 of 12 potential). 23% (n¼49) were discharged home. Conclusion. Nutritional assessment was neither comprehensive nor routine despite a high prevalence of abnormalities consistent with cachexia. Anorexia was common. Weight evaluation was infrequent. Symptom burden was high, and inflammatory markers were elevated.
Cancer Cachexia Assessment in a Specialist Palliative Care Inpatient Unit (FR441B)
Implications for Research, Policy, and Practice. Almost one quarter of patients were dis-
Cliona Lorton, MB, Our Lady’s Hospice and Care Services, Dublin, Ireland. Louise O’Halloran. Eimear Loftus, Student Trinity College, Dublin, Ireland. Shane Lyng Waterford, Trinity College, Dublin, Ireland. Declan Walsh, MD, Trinity College, Dublin, Ireland.
charged and might have benefited from intervention. Screening tools and education are needed to prompt recognition and appropriate management of cancer cachexia in the palliative care setting.
Objectives Name key considerations in the assessment of cachexia and application of these in a palliative care setting. Identify barriers to assessment of cachexia in palliative care and how these may be overcome.
Validation of Cancer Dyspnea Scale for Advanced Cancer Patients in a Tertiary Cancer Centre (FR441C) Anuja Damani, MD, Tata Memorial Center, Mumbai, Maharashtra, India. Arunangshu Ghoshal, MD, Tata Memorial Center, Mumbai, Maharashtra, India.