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Integrating Palliative Care in Hematopoietic Stem Cell Transplantation: A Qualitative Study Exploring Patient, Caregiver, and Clinician Perspectives
Booker, R., McLennan, A. I. G., Beattie, S., Stajduhar, K. I., Sawatzky, R.
Oncology nursing forum. 2023;50(3):313-323
Abstract
PURPOSE To explore patient, caregiver, and clinician perspectives on palliative care for patients undergoing hematopoietic stem cell transplantation (HSCT). PARTICIPANTS & SETTING 8 patients who had undergone or would undergo HSCT, 4 caregivers, and 16 HSCT clinicians. METHODOLOGIC APPROACH This qualitative, interpretive descriptive study used semistructured interviews conducted via telephone or videoconference. FINDINGS Responses were categorized into the following two themes: concerns and challenges during and after HSCT, and tensions with integrating palliative care into HSCT. IMPLICATIONS FOR NURSING The findings from this study highlight the unique and varied needs of patients and their caregivers during and after HSCT. More research is required to determine how to best integrate palliative care in this setting.
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Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes
Levine, D. R., Epperly, R., Collins, G., Talleur, A. C., Mandrell, B., Pritchard, M., Sarvode Mothi, S., Li, C., Lu, Z., Baker, J. N.
Journal of pain and symptom management. 2023
Abstract
CONTEXT Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT.
OBJECTIVES This study aimed to evaluate perceived symptom burden and patient/parent attitudes toward early PC integration in pediatric HCT.
METHODS Following IRB approval, consent/assent, eligible participants were surveyed at St. Jude Children's Research Hospital including English-speaking patients aged 10-17, 1month -1year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients
RESULTS 81 participants, within one year of HCT, at St. Jude Children's Research Hospital were enrolled including: 36 parents of patients CONCLUSION Our findings suggest that patient/family receptivity should not be a barrier to early PC in pediatric HCT; obtaining patient reported outcomes is a priority in the setting of high symptom burden; and robust quality-of-life directed care with early PC integration is both indicated and acceptable to patients/caregivers.
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End-of-Life Care in Patients Undergoing Allogeneic Hematopoietic Cell Transplantation
Salazar, M. M., DeCook, L. J., Butterfield, R. J., Zhang, N., Sen, A., Wu, K. L., Vanness, D. J., Khera, N.
Journal of palliative medicine. 2021
Abstract
Background: Patients receiving allogeneic hematopoietic cell transplantation (HCT) have high morbidity and mortality risk, but literature is limited on factors associated with end-of-life (EOL) care intensity. Objectives: Describe EOL care in patients after allogeneic HCT and examine association of patient and clinical characteristics with intense EOL care. Design: Retrospective chart review. Setting/Subjects: A total of 113 patients who received allogeneic HCT at Mayo Clinic Arizona between 2013 and 2017 and died before November 2019. Measurements: A composite EOL care intensity measure included five markers: (1) no hospice enrollment, (2) intensive care unit (ICU) stay in the last month, (3) hospitalization >14 days in last month, (4) chemotherapy use in the last two weeks, and (5) cardiopulmonary resuscitation, hemodialysis, or mechanical ventilation in the last week of life. Multivariable logistic regression modeling assessed associations of having =1 intensity marker with sociodemographic and disease characteristics, palliative care consultation, and advance directive documentation. Results: Seventy-six percent of patients in our cohort had =1 intensity marker, with 43% receiving ICU care in the last month of life. Median hospital stay in the last month of life was 15 days. Sixty-five percent of patients died in hospice; median enrollment was 4 days. Patients with higher education were less likely to have =1 intensity marker (odds ratio 0.28, p?=?0.02). Patients who died >100 days after HCT were less likely to have =1 intensity marker than patients who died =100 days of HCT (p?=?0.04). Conclusions: Death within 100 days of HCT and lower educational attainment were associated with higher likelihood of intense EOL care.
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Implementation of Palliative Care in Clinical Practice in German Units for Allogeneic Stem Cell Transplantation: A Nationwide Survey
Krüger, W., Buchhold, B., Nonnenberg, D., Neumann, T., Schneidewind, L., Schmidt, C. A.
The American journal of hospice & palliative care. 2021;:1049909120986963
Abstract
Allogeneic stem cell transplantation (alloSCT) is a curative therapy for otherwise fatal diseases, however it is associated with a considerable morbidity and mortality. In consequence, it can be assumed that a considerable percentage of patients would benefit from high-quality palliative care (PC) during their course of disease. To assess the standard of PC in German transplant centers, a questionnaire was sent out to all German centers recognized from the EBMT membership list and the annually ZKRD report (n = 52). The response rate was not as high as expected with n = 27 (51,9%), even after reminding by phone calls or by e-mails. In brief, palliative care after allogeneic stem cell transplantation shows a wide variation in Germany. This is true for structures, processes and measures. A national standard for SCT-patients has not been established so far and there are no pre-conditions concerning palliative care after alloSCT for a certification by the EBMT according the JACIE standards. There is a considerable need for a crosslinking of alloSCT with PC. Clear standards should be established by the scientific societies concerning personnel, structure and processes.
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Palliative care for patients undergoing stem cell transplant: intervention components and supportive care measures
Nelson, A. M., Johnson, P. C., Kavanaugh, A. R., Jackson, V. A., Jagielo, A. D., Fenech, A. L., Reynolds, M. J., Topping, C., Yi, A. M., Horick, N., et al
Bone marrow transplantation. 2021
Abstract
An inpatient palliative care intervention during HCT led to improvement in patient QOL and mood. We sought to describe components of the intervention, investigate differences in supportive care practices by treatment arm, and explore whether these differences mediated the impact of the intervention on patient QOL and mood. We conducted a secondary analysis of a randomized trial investigating inpatient palliative care integrated with transplant care versus standard transplant care for HCT recipients. Palliative care clinicians completed weekly surveys to describe topics addressed during visits. We extracted use of supportive care medications from the medical record. Participants completed QOL and mood assessments at baseline and two weeks post-HCT. Causal mediation assessed whether differences in supportive care practices mediated the impact of the intervention on patient-reported outcomes. A total of 160 HCT recipients participated. Palliative care visits most frequently focused on managing symptoms and coping with HCT. Patients randomized to the intervention were more likely to use Patient-Controlled Analgesia (PCA) (32.1% vs. 15.2%, p?=?0.02) and atypical antipsychotics (35.8% vs. 17.7%, p?=?0.01). Neither PCA nor atypical antipsychotics mediated the effect of the intervention on patient-reported outcomes. Future work to explore mechanisms by which the palliative care intervention improves QOL and mood is needed.
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Advanced Care Planning and End-of-life Outcomes in Hematopoietic Stem Cell Transplant Patients
Cooper, A., Dains, J. E.
The American journal of hospice & palliative care. 2020;:1049909120971566
Abstract
AIM/PURPOSE This integrative review addresses whether the presence and timing of advanced care planning (ACP) with or without a palliative care (PC) consultation affect place of death and use of high-intensity medical care at end-of-life (EOL) in adolescent and young adult and adult cancer patients receiving hematopoietic stem cell transplant (HSCT) therapy. METHODS AND RESULTS A literature search was completed in the Scopus and PubMed databases. The search was not restricted by date but was restricted to English language. A total of 1,616 articles were found, and after exclusion of duplicates and irrelevance, 79 articles were available to review. After reviewing inclusion and exclusion criteria, 9 articles related to ACP with HSCT were found, and 4 were eliminated after further review, resulting in 5 viable articles for review related to EOL outcomes. EOL outcomes reviewed were place of death and high-intensity medical care. Factors noted to influence these measures included the presence or absence of ACP, the timing of ACP, and PC consultation. Overall survival also emerged as an EOL outcome affected by ACP. CONCLUSION Although there have been many barriers identified to ACP discussions in the HSCT population, the findings from the integrative literature review support the use of early ACP with patients who have hematologic malignancies undergoing HSCT to address patient EOL goals and reduce healthcare utilization at the EOL. The data also suggest that identification of patients who would most benefit from early engagement in ACP may positively impact outcomes.
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The profile of the onco-hematology patient in the palliative care: 4 years of experience
Couto, M. E., Oliveira, I., Mariz, M., Ferraz Gonçalves, J.
Porto biomedical journal. 2019;4(6):e39
Abstract
OBJECTIVES Most of the palliative care (PC) patients have oncologic diseases, being hematologic tumors a small part of them. According to the literature, onco-hematologic (OH) patients should be individualized from those with solid tumors for the specialized care required along their disease course. This study aims to review the casuistry of OH patients referred to PC in a specialized oncologic hospital and help to understand better how hematologists can improve the care of these patients. METHODS We analyzed all OH patients referred to the PC service in 1 oncologic hospital along 42 months, through consultation of their clinical files. RESULTS A total of 179 patients were reviewed (52.% males, median age of 71 years): 48.6% had non-Hodgkin lymphoma, 26.3% had multiple myeloma, 10.6% had acute leukemia, 14.5% had other OH diseases; 88.2% were treated for their OH disease (96.2% with chemotherapy, 28.5% radiotherapy, and 21.5% hematopoietic stem cell transplant). The referral was heterogeneous among physicians (27.4% by 1 physician). Most patients were firstly observed as inpatients (55.3%) and 17.9% in the outpatient consult. At the end of the study, 98.9% of the patients died (88.7% in the hospital, 10.2% at home). The median time between the end of treatment and referral do PC was 46 days and between referral and death was 16 days. We also reviewed medical prescription in the last month of life and we noticed that most invasive orders were requested by hematologists (as antibiotic prescription, imaging, and biopsy studies). SIGNIFICANCE OF RESULTS This study demonstrated that OH patients should be referred earlier to PC and that a more intensive team work needs to be practiced between PC and hematologists. More educational programs for healthcare workers on this issue are needed in order to guarantee a more effective assistance in the appropriate time.
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Utilization of Palliative Care for Patients Undergoing Hematopoietic Stem Cell Transplantation During Hospitalization: A Population-Based National Study
Han, H., Liu, Y., Qin, Y., Guo, W., Ruan, Y., Wu, C., Cao, Y., He, J.
The American journal of hospice & palliative care. 2019;:1049909119838975
Abstract
OBJECTIVE Patients undergoing hematopoietic stem cell transplantation (HSCT) have substantial physical and psychological symptoms. This study aimed to investigate the utilization of palliative care (PC) in patients undergoing HSCT during hospitalization. METHODS The 2008-2014 National Inpatient Sample was queried for eligible participants. Demographics, hospital characteristics, comorbidities, posttransplantation complications, and inpatient procedures were compared between patients with and without PC. Multivariate logistic regression was performed to identify predictors associated with PC use. RESULTS Among 21 458 patients undergoing HSCT during hospitalization, 278 (1.30%) received PC. The rate of PC use has significantly increased from 0.64% in 2008 to 1.95% in 2014. Patients receiving PC had more co-comorbidities, posttransplantation complications, inpatient procedures, and were more likely to carry a diagnosis of leukemia. In allogeneic HSCT, large bed size (odds ratio [OR] =2.80; 95% confidence interval [CI]: 1.17-6.70), stem cell source from cord blood (OR = 1.93; 95% CI: 1.15-3.24), and graft-versus-host disease (OR = 2.04; 95% CI: 1.36-3.06) were predictors of PC use. In a subset analysis of 783 patients who died during hospitalization, 166 (21.20%) received PC. Among the decedents, Hispanic race had lower odds of PC use (OR = 0.20; 95% CI: 0.05-0.82) in allogeneic HSCT and women had higher odds of PC (OR = 2.70; 95% CI: 1.35-5.41) in autologous HSCT. CONCLUSIONS The rate of PC use has significantly increased among patients undergoing HSCT during hospitalization from 2008 to 2014 but still remains very low. Further investigation is warranted to verify and better understand the barriers toward PC use for HSCT patients.
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End-of-Life Care Intensity in Patients Undergoing Allogeneic Hematopoietic Cell Transplantation: A Population-Level Analysis
Johnston, E. E., Muffly, L., Alvarez, E., Saynina, O., Sanders, L. M., Bhatia, S., Chamberlain, L. J.
Journal of clinical oncology : official journal of the American Society of Clinical Oncology. 2018;:Jco2018780957
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Abstract
Purpose Intensity of end-of-life care receives much attention in oncology because of concerns that high-intensity care is inconsistent with patient goals, leads to worse caregiver outcomes, and is expensive. Little is known about such care in those undergoing allogeneic hematopoietic cell transplantation (HCT), a population at high risk for morbidity and mortality. Patients and Methods We conducted a population-based analysis of patients who died between 2000 and 2013, within 1 year of undergoing an inpatient allogeneic HCT using California administrative data. Previously validated markers of intensity were examined and included: hospital death, intensive care unit (ICU) admission, and procedures such as intubation and cardiopulmonary resuscitation at end of life. Multivariable logistic regression models determined clinical and sociodemographic factors associated with: hospital death, a medically intense intervention (ICU admission, cardiopulmonary resuscitation, hemodialysis, intubation), and ≥ two intensity markers. Results Of the 2,135 patients in the study population, 377 were pediatric patients (age ≤ 21 years), 461 were young adults (age 22 to 39 years), and 1,297 were adults (age ≥ 40 years). The most common intensity markers were: hospital death (83%), ICU admission (49%), and intubation (45%). Medical intensity varied according to age, underlying diagnosis, and presence of comorbidities at time of HCT. Patients with higher-intensity end-of-life care included patients age 15 to 21 years and 30 to 59 years, patients with acute lymphoblastic leukemia, and those with comorbidities at time of HCT. Conclusion Patients dying within 1 year of inpatient allogeneic HCT are receiving medically intense end-of-life care with variations related to age, underlying diagnosis, and presence of comorbidities at time of HCT. Future studies need to determine if these patterns are consistent with patient and family goals.
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Advance Directive Utilization Is Associated with Less Aggressive End-of-Life Care in Patients Undergoing Allogeneic Hematopoietic Cell Transplantation
Cappell, K., Sundaram, V., Park, A., Shiraz, P., Gupta, R., Jenkins, P., Periyakoil, V. S. J., Muffly, L.
Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation. 2018;24(5):1035-1040
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Abstract
Allogeneic hematopoietic cell transplantation (HCT) is associated with significant morbidity and mortality, making advance care planning (ACP) and management especially important in this patient population. A paucity of data exists on the utilization of ACP among allogeneic HCT recipients and the relationship between ACP and intensity of healthcare utilization in these patients. We performed a retrospective review of patients receiving allogeneic HCT at our institution from 2008 to 2015 who had subsequently died after HCT. Documentation and timing of advance directive (AD) completion were abstracted from the electronic medical record. Outcomes of interest included use of intensive care unit (ICU) level of care at any time point after HCT, within 30 days of death, and within 14 days of death; use of mechanical ventilation at any time after HCT; and location of death. Univariate logistic regression was performed to explore associations between AD completion and each outcome. Of the 1031 patients who received allogeneic HCT during the study period, 422 decedents (41%) were included in the analysis. Forty-four percent had AD documentation prior to death. Most patients (69%) indicated that if terminally ill, they did not wish to be subjected to life-prolonging treatment attempts. Race/ethnicity was significantly associated with AD documentation, with non-Hispanic white patients documenting ADs more frequently (51%) compared with Hispanic (22%) or Asian patients (35%; P = .0007). Patients with ADs were less likely to use the ICU during the transplant course (41% for patients with ADs versus 52% of patients without ADs; P = .03) and also were less likely to receive mechanical ventilation at any point after transplantation (21% versus 37%, P < .001). AD documentation was also associated with decreased ICU use at the end of life; relative to patients without ADs, patients with ADs were more likely to die at home or in hospital as opposed to in the ICU (odds ratio, .44; 95% confidence interval, .27 to .72). ACP remains underused in allogeneic HCT. Adoption of a systematic practice to standardize AD documentation as part of allogeneic HCT planning has the potential to significantly reduce ICU use and mechanical ventilation while improving quality of care at end of life in HCT recipients.
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