scholarly journals Optimizing the delivery of early palliative care for hematology patients receiving a stem cell transplant: A role for a Nurse Practitioner

2020 ◽  
Vol 30 (4) ◽  
pp. 239-245
Author(s):  
Ellen Lewis

A hematopoietic stem cell transplant (HSCT) is an intense treatment approach for patients with a hematologic malignancy and brings a significant risk for morbidity and mortality. HSCT brings hope of cure for patients; however, treatments are lengthy and burdensome from both a physical and psychosocial perspective. As the culture of HSCT has traditionally been cure-oriented, it leaves little room for a potential partnership with palliative care services, and when palliative care services are introduced, it is often too late for significant benefit. The need to standardize palliative care involvement for patients with hematologic malignancies receiving a HSCT has become necessary, yet there are challenges with the best way to create such a partnership. Nurse practitioners are a steadily growing professional body possessing the knowledge and skill necessary to fill the gap in palliative care delivery for HSCT patients. The proposed Nurse Practitioner Early Palliative Care for HSCT patients (NEST) algorithm will seek to provide a pathway in which to foster a partnership between hematology/HSCT teams and palliative services to yield the best care possible for patients.

Children ◽  
2021 ◽  
Vol 8 (8) ◽  
pp. 615
Author(s):  
Hilda Mekelenkamp ◽  
Teija Schröder ◽  
Eugenia Trigoso ◽  
Daphna Hutt ◽  
Jacques-Emmanuel Galimard ◽  
...  

Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.


2020 ◽  
Vol 30 (4) ◽  
pp. 246-252
Author(s):  
Ellen Lewis

La greffe de cellules souches hématopoïétiques (GCSH) est une approche thérapeutique intensive des hémopathies malignes qui s’accompagne d’un important risque de morbidité et de mortalité. Malgré la lueur d’espoir qu’elle apporte aux patients, les traitements sont longs et pénibles, tant du point de vue physique que psychosocial. Habituellement, la greffe de cellules souches hématopoïétiques a une visée curative qui laisse peu de place à un partenariat éventuel avec les services de soins palliatifs et, lorsque ces derniers sont proposés, il est souvent trop tard pour en tirer un bénéfice notable. Il faudrait donc systématiser le recours aux soins palliatifs pour les patients atteints d’hémopathie maligne qui reçoivent une GCSH; cependant, il demeure difficile de trouver la meilleure voie pour établir un tel partenariat. Les infirmières praticiennes, qui sont de plus en plus nombreuses, possèdent les connaissances et les compétences requises pour combler les lacunes dans la prestation de soins palliatifs aux patients recevant une GCSH. L’algorithme de soins palliatifs précoces dispensés par les infirmières praticiennes aux patients recevant une GCSH (dit NEST en anglais, pour « Nurse-Practitioner-Delivered Early Palliative Care for Stem Cell Transplant ») vise justement à faire le pont entre les services palliatifs et les équipes d’hématologie et de greffe afin d’offrir aux patients les meilleurs soins possible.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 7034-7034
Author(s):  
Stephanie Hoffman ◽  
Pavan Reddy ◽  
John Martin Magenau ◽  
Attaphol Pawarode ◽  
Brian Parkin ◽  
...  

7034 Background: The impacts of advance care planning (ACP) on end-of-life (EOL) outcomes in allogeneic hematopoietic stem cell transplant (allo HCT) recipients are not well known. ACP includes advance directive (AD) completion, and palliative care (PC) consultation. Using these two components, we aimed to explore the current state of ACP and its impact on EOL outcomes in allo HCT recipients to provide the groundwork for future prospective studies. Methods: We performed a retrospective study of deceased adult patients who underwent allo HCT between December 2015-December 2019. We summarized patient characteristics, the rate of AD completion, PC consultation, and location of end-of-life (EOL). Univariate and multivariate analyses were performed to evaluate patient characteristics that may be associated with AD completion, PC consultation and assess the impact of these two factors on location of EOL. Results: See Table for summary of patient characteristics. Of the 125 patients included, we found that 66% (n = 82) completed ADs. All patients with ADs completed them prior to undergoing transplant and never modified them. The majority of patients (84%) with an AD expressed the desire to avoid life-sustaining treatment in the event of terminal illness or irreversible coma. PC was consulted for 46% (n = 58) of patients within 6 months prior to time of death (TOD). Regarding location of EOL, 30% of all patients died in the hospital (non-ICU), 20% in the ICU, 38% at home with hospice, and 10% in a hospice facility. Patients with ADs appeared more likely to die outside of the hospital compared to those without (53% vs. 44%, p = 0.4506). By multivariate analysis, there were no significant patient characteristics associated with the presence of an AD or PC consultation. After adjusting for age and comorbidity index, we found that patients with an AD were significantly more likely to die outside of the ICU (OR 3.0, 95% CI 1.2-7.5, p = 0.02), an effect that was further amplified in patients who both had an AD and received PC consultation at any point (n = 30, p = 0.0077). Conclusions: Our findings highlight the importance of ACP for EOL outcomes in the allo HCT population. While the rate of AD completion in our study population is higher than that of prior studies, future prospective studies aimed to improve the rate of ACP are needed.[Table: see text]


2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 112-112
Author(s):  
Deena R. Levine ◽  
Justin N. Baker

112 Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patients are prone to a great degree of treatment related toxicity and are at high risk for morbidity and mortality and, while ideally suited to benefit, inherent factors in this cure oriented field preclude the integration of PC services. Most notably, family receptivity to PC is often perceived as a barrier in HSCT yet there is no data on family attitudes toward PC in this setting. This study aimed to evaluate perceived symptom burden and patient and parent attitudes toward early PC integration in pediatric HSCT. Methods: After IRB approval, development and pre-testing, novel survey tools were administered to HSCT patients and parents. Eligibility criteria included parent of an HSCT recipient < age 10 or patient/parent dyad for patients aged 10-17, time from HSCT > 1 month and < 1 year, English-speaking, and consent/assent. Data was assessed for trends in response content frequencies, percentages and parent/child concordance. Results: Interim analysis of the first 34 participants revealed high levels of perceived symptom related suffering in the first month of HSCT with suffering from: nausea 96%, loss of appetite 88%, diarrhea 88%, pain 83%, depression 79%, anxiety 75%, and constipation 42%. 90% of patients and 71% parents expressed that a great deal or a lot of attention should be paid to quality of life from the start of HSCT. The majority of patient and parent respondents (60/46%) indicated they would likely want to meet with PC early in HSCT and very few reported definite opposition (0% children, 4% parents). Conclusions: Pediatric HSCT patients experience a high degree of symptom related suffering, perceive quality of life as a high priority, and are largely in favor of early PC involvement. Our findings suggest that family receptivity should not be a barrier to early PC in pediatric HSCT and that aggressive cure directed therapy can and should be accompanied by aggressive quality of life directed care through early PC integration.


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