Palliative care has been defined as specialized care for patients facing serious illnesses. Despite advancements in the field and studies documenting the effectiveness of early palliative care (PC) interventions in seriously ill patients, the fields of hematologic malignancies and bone marrow transplant still lag behind of a comprehensive framework for early and effective interventions. The aim of this literature review is to analyze and discuss the possible barriers to care and delayed referrals for hematologic malignancies and bone marrow transplant patients. Using the EBSCO and PubMed databases, articles regarding PC among patients with hematologic malignancies and bone marrow transplant were analyzed. There are three main domains with its respective barriers in PC: physicians, patients and caregivers, and the healthcare system. Issues that were identified included the lack of knowledge and misconceptions about PC among physicians, patients, and caregivers, delayed referral of patients with hematologic malignancies, unrealistic treatment expectations, lack of communication between specialties, difficulties with appointment availability, geographical distance between clinics, and lack of insurance coverage for PC services. We suggest possible alternatives including obligatory continuing medical education (CME) credits, loan forgiveness, rotations during residency and fellowship training, use of informational videos and pamphlets to educate patients and caregivers, obligatory early consults despite prognosis, an algorithm to evaluate patient's needs, creating a platform within electronic medical records (EMR) systems shared by specialties, and having PC service in every cancer center. Findings suggest a need for further studies aimed towards implementing solutions to increase the early referral of patients with hematologic malignancies and bone marrow transplantation (BMT) to palliative care.
BACKGROUND: The care of patients in the United States who have ESKD is often shaped by their hopes and prognostic expectations related to kidney transplant. Little is known about how patients' engagement in the transplant process might relate to patterns of end-of-life care.
METHODS: We compared six measures of intensity of end-of-life care among adults in the United States with ESKD who died between 2005 and 2014 after experiencing differing exposure to the kidney transplant process.
RESULTS: Of 567,832 decedents with ESKD, 27,633 (5%) had a functioning kidney transplant at the time of death, 14,653 (3%) had a failed transplant, 16,490 (3%) had been removed from the deceased donor waitlist, 17,010 (3%) were inactive on the waitlist, 11,529 (2%) were active on the waitlist, and 480,517 (85%) had never been waitlisted for or received a transplant (reference group). In adjusted analyses, compared with the reference group, patients exposed to the transplant process were significantly more likely to have been admitted to an intensive care unit and to have received an intensive procedure in the last 30 days of life; they were also significantly more likely to have died in the hospital. Those who died on the transplant waitlist were also less likely than those in the reference group to have been enrolled in hospice and to have discontinued dialysis before death.
CONCLUSIONS: Patients who had engaged in the kidney transplant process received more intensive patterns of end-of-life care than other patients with ESKD. These findings support the relevance of advance care planning, even for this relatively healthy segment of the ESKD population.
Background: Patients with end-stage liver disease awaiting liver transplantation (LT) are seriously ill and experience fluctuating periods of clinical decompensation. Discussion of a patient’s advance care planning (ACP) wishes early in their dynamic disease course is critical to providing value-aligned care while awaiting LT. We aimed to evaluate current ACP documentation and assess readiness to engage in ACP in this population.
Methods: We conducted a retrospective study of adults undergoing LT evaluation from January 2017 to June 2017 and assessed characteristics associated with documentation using logistic regression. We then administered a survey to LT candidates from March 2018 to May 2018 to determine self-reported readiness to engage in ACP (range 1 = not at all ready to 5 = very ready).
Results: Among 170 LT candidates, median (interquartile range) age was 58 (53–65), 65% were men, MELDNa was 15 (11–21), and Child–Pugh A/B/C were 33/38/29%. Nine percent reported completing ACP prior to LT evaluation, but 0% had legal ACP forms or end-of-life wishes documented in the medical record. A durable power of attorney (DPOA) was discussed with 10%. In univariable analysis, white race (OR 4.16, p = 0.03) and female sex (OR 3.06, p = 0.04) were associated with ACP documentation, but Child–Pugh score and MELDNa were not. Of the 41 LT candidates who completed the ACP survey, 93% were ready to appoint a DPOA and 85% were ready to discuss end-of-life care.
Conclusion: There is a paucity of ACP documentation and identification of DPOA among LT candidates, despite patients reporting readiness to complete ACP and appoint a DPOA. These results reveal an opportunity for tools to facilitate discussions around ACP between clinicians, patients, and their caregivers.
Background: The optimal timing to introduce palliative care (PC) and end-of-life (EOL) conversations into the lives of people with cystic fibrosis (CF) has not been established.
Objective: Compare EOL care practices for people with CF who died without a lung transplant (LT), are living without an LT, and those who received an LT.
Design: Retrospective chart review.
Setting/Subjects: People with CF who received care from 2012 to 2017 at the University of Texas Southwestern Medical Center.
Measurements: Primary outcomes were (1) EOL discussion with a pulmonologist, (2) time of EOL discussion before death or LT, (3) evaluation by PC, and (4) documentation of advanced directive or medical power of attorney.
Results: Twenty-three patients died without LT, 40 patients received an LT, and 222 were living without an LT. Among LT recipients, 10% had EOL conversations compared with 74% of deceased patients and 5% of living patients without LT (p = 0.001). Among deceased patients, 39% had EOL conversations more than six months before death, while 5% of transplanted patients had EOL conversation more than six months before LT (p < 0.001). Deceased patients were more likely to have seen PC (57%) than either patients who received LT (2%) or those living without LT (3%, p = 0.0001).
Conclusions: Patients who died without LT were more likely to have seen PC and had an EOL conversation than patients who received LT or who are living without LT. Further research should explore the optimal timing to discuss EOL care and the best timing to involve PC.
La transplantation d’organes permet de prolonger et d’améliorer la qualité de vie d’un nombre croissant de patients. Dans le contexte de la pandémie actuelle de l’infection au coronavirus SARS-CoV-2 et de la maladie qui en découle (COVID-19), la communauté de transplantation s’interroge sur le risque encouru par les patients greffés, sur la manière d’assurer un suivi adéquat d’une population à risque, et sur le schéma thérapeutique à adopter en cas de maladie avérée. Dans cet article nous décrivons les connaissances actuelles quant à l’incidence et à l’évolution de l’infection SARS-CoV-2 chez des patients greffés. En accord avec les sociétés de discipline, nous proposons des recommandations de prise en charge thérapeutique, et amenons quelques éléments de réflexion en tenant compte d’une possible limitation des ressources et d’une situation pandémique évolutive.
Spain has been one of the most affected countries by the COVID-19 outbreak. As of 28 April 2020, the number of confirmed cases is 210,773, including 102,548 patients recovered, more than 10,300 admitted to the ICU, and 23,822 deaths, with a global case fatality rate of 11.3%. From the perspective of donation and transplantation, the Spanish system first focused on safety issues, providing recommendations for donor evaluation and testing, and to rule out SARS-CoV-2 infection in potential recipients prior to transplantation. Since the country entered into an epidemiological scenario of sustained community transmission and saturation of intensive care, developing donation and transplantation procedures has become highly complex. Since the national state of alarm was declared in Spain on 13 March 2020, the mean number of donors has declined from 7.2 to 1.2 per day, and the mean number of transplants from 16.1 to 2.1 per day. Increased mortality on the waiting list may become a collateral damage of this terrible pandemic.
Context and Objectives: The myriad of benefits of early palliative care (PC) integration in oncology are well established, and emerging evidence suggests that PC improves symptom burden, mood, and quality of life for hematopoietic cell transplant (HCT) recipients. Specific impact of PC consultation on outcomes of older allogeneic HCT (allo-HCT) recipients, a historically high-risk population vulnerable to transplant-related complications and mortality, has not been explored.
Design and Methods: In this single institution, retrospective analysis of 527 first allo-HCT recipients aged =60 years, we characterized 75 patients who had received post-HCT PC consultation and its association with geriatric vulnerabilities identified by pre-HCT geriatric assessment. We also examined end-of-life care outcomes among patients who died within one-year of allo-hematopoietic cell transplantation.
Results: In multivariate analysis, higher disease risk, female gender, and, importantly, pre-HCT functional limitation (hazard ratio 2.35, 95% confidence interval, 1.35–4.09, p = 0.003) were associated with post-HCT PC utilization. Within one-year of hematopoietic cell transplantation, 127 patients died; among those, recipients of early PC consultation had significantly higher rates of hospice enrollment (25% vs. 9%, p = 0.019) and lower rates of hospital death (71% vs. 90%, p = 0.013), intensive care unit admission (44% vs. 75%, p = 0.001), and high-intensity medical care in last 30 days of life (46% vs. 77%, p = 0.001).
Conclusions: Our results highlight important pre-HCT risk factors associated with increased PC needs posthematopoietic cell transplantation and benefits of PC involvement for older allo-HCT recipients at the end of life. Prospective studies should examine the optimal timing of PC consultation and its multidimensional benefits for older allo-HCT patients.
Background: Lung transplant patients experience significant physical symptoms and psychological stress that affect their quality of life. Palliative care is an interdisciplinary specialty associated with improved symptom management and enhanced quality of life. Little, however, is known about the palliative care needs of lung transplant patients and the role it plays in their care.
Aim: The aim of this integrative review was to synthesize the literature describing the palliative care needs, the current role, and factors influencing the integration of palliative care in the care of lung transplant patients.
Design/Data Sources: We searched PubMed, Scopus, CINAHL, and Embase to identify English-language, primary studies focused on palliative care in adult lung transplantation. Study quality was evaluated using Strengthening the Report of Observational studies in Epidemiology and Consolidated Criteria for Reporting Qualitative Research criteria.
Results: Seven articles were included in the review. Most were single-center, descriptive studies. Two studies used qualitative and 5 used quantitative methodologies. Collectively, these studies suggest that palliative care is typically consulted for physical and psychological symptom management, although consultation is uncommon and often occurs late in the lung transplant process. We found no studies that systematically assessed palliative needs. Misperceptions about palliative care, communication challenges, and unrealistic patient/family expectations are identified barriers to the integration. While limited, evidence suggests that palliative care can be successfully integrated into lung transplant patient management.
Conclusions: Empirical literature about palliative care in lung transplantation is sparse. Further research is needed to define the needs and opportunities for integration into the care of these patients.
Stella Grant a dix-sept ans, et elle a passé une bonne partie de sa vie à l'hôpital. Atteinte de mucoviscidose, elle maîtrise scrupuleusement sa situation, enchaînant les to-do list, suivant ses traitements et les recommandations des médecins à la lettre. Alors qu'elle attend une greffe de poumons, elle retourne à l'hôpital pour quelques semaines. Alors qu'elle suit sa routine quotidienne, elle rencontre un nouveau patient, Will, atteint par la même maladie qu'elle.
Malheureusement, le jeune homme souffre également d'une bactérie fatale qui lui interdit toute chance d'obtenir une greffe de poumons. Si Stella l'attrape, elle peut dire adieu à la greffe. Les deux adolescents ont donc l'interdiction absolue de s'approcher à moins de deux mètres. Malgré cette obligation, Will et Stella se rapprochent peu à peu et tombent amoureux. Ils doivent alors user de stratagèmes pour semer les infirmières et passer du temps ensemble.
Très vite, cette distance entre eux ne rime plus avec sécurité, mais avec punition.
BACKGROUND: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT.
METHODS: A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed.
RESULTS: All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival.
DISCUSSION: Parents experienced EOL decision-making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.
INTRODUCTION: In patients with advanced cancer, prolongation of life with treatment often incurs substantial emotional and financial expense. Among hospitalized patients with cancer since acute kidney injury (AKI) is known to be associated with much higher odds for hospital mortality, we investigated whether renal replacement therapy (RRT) use in the intensive care unit (ICU) was a significant independent predictor of worse outcomes.
METHODS: We retrospectively reviewed patients admitted in 2005 to 2014 who were diagnosed with stage IV solid tumors, had AKI, and a nephrology consult. The main outcomes were survival times from the landmark time points, inpatient mortality, and longer term survival after hospital discharge. Logistic regression and Cox proportional regression were used to compare inpatient mortality and longer term survival between RRT and non-RRT groups. Propensity score-matched landmark survival analyses were performed with 2 landmark time points chosen at day 2 and at day 7 from ICU admission.
RESULTS: Of the 465 patients with stage IV cancer admitted to the ICU with AKI, 176 needed RRT. In the multivariate logistic regression model after adjusting for baseline serum albumin and baseline maximum Sequential Organ Failure Assessment (SOFA), the patients who received RRT were not significantly different from non-RRT patients in inpatient mortality (odds ratio: 1.004 [95% confidence interval: 0.598-1.684], P = .9892). In total, 189 patients were evaluated for the impact of RRT on long-term survival and concluded that RRT was not significantly associated with long-term survival after discharge for patients who discharged alive. Landmark analyses at day 2 and day 7 confirmed the same findings.
CONCLUSIONS: Our study found that receiving RRT in the ICU was not significantly associated with inpatient mortality, survival times from the landmark time points, and long-term survival after discharge for patients with stage IV cancer with AKI.
BACKGROUND: Advance care planning (ACP) engagement and completion of advance directives remain low in patients undergoing haematopoietic stem cell transplantation, despite the high risk of treatment-related mortality.
AIM: To understand the barriers to and facilitators of ACP in haematopoietic stem cell transplantation.
METHODS: This qualitative study used interpretive description methodology. The researchers conducted audio-recorded semi-structured interviews with participants. The constant comparative method was used to analyse data.
RESULTS: A total of six patients, five family members and eight clinicians participated in the study. Perceived barriers to ACP included: lack of time, lack of process, lack of understanding of disease/treatment and ACP, need to keep positive and prognostic uncertainty. Potential facilitators of ACP included: early and frequent discussion of ACP, incorporating ACP into routine care, involvement of the multidisciplinary team and framing discussions on ACP as positive.
CONCLUSIONS: Haematopoietic stem cell transplantation poses unique challenges for patients, families and clinicians when it comes to ACP. Introducing advance care planning as part of standard care and providing ongoing facilitation of ACP, including discussion of disease and treatment expectations at the outset and when complications arise may assist patients and families in recognising how ACP can fit into and enhance their care.
BACKGROUND: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature.
AIM: The aim of this study was to explore and better understand the influences on decision-making for adolescent and young adult bone marrow transplant patients about future medical care.
DESIGN: Clinical case studies and qualitative inductive content analysis of treatment decisions made during the Respecting Choices® Next Steps Pediatric Advance Care Planning conversation as a component of the Family-Centered Advance Care Planning Intervention.
SETTINGS/PARTICIPANTS: A total of 10 adolescent and young adult patients (aged 14–27 years) undergoing bone marrow transplant at an academic Midwest children’s hospital were involved in the study.
CONCLUSION: This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness.
Transplantation of organs donated after euthanasia may help alleviate the critical organ shortage. However, aside from preliminary data on lung transplantation, data on graft and patient survival following transplantation of organs donated after euthanasia are unavailable. Because donation after euthanasia entails a period of detrimental warm ischemia that hampers graft survival, similar to donation after circulatory death, results after transplantation of this type of graft need to be carefully evaluated.
La spécialité de la réanimation est une discipline jeune, née dans les années 1950, la dénomination de médecine intensive-réanimation pour les services médicaux étant récente. Elle est marquée par des évolutions techniques incessantes, tout en étant soumise à de fortes demandes sociétales. Symbolisant à la fois la performance et la toute-puissance médicales aux yeux du public, cette spécialité soulève de nombreuses questions éthiques parmi les patients, leurs proches et parmi les professionnels.
La réalité d'une clinique confrontant quotidiennement à la vie, la survie et la mort conduit les professionnels de ces services à s'ouvrir à d'autres disciplines pour préserver le sens du soin et son humanité. Les auteurs font le point sur ces enjeux contemporains en s'appuyant sur leur expertise en tant que réanimateurs polyvalents ou spécialisés, soignants, ou psychologues cliniciens. Ils approchent ces questions en croisant les regards sur le vécu émotionnel et psychique des professionnels, celui des patients ou celui des familles.
Une grande variété de situations sont abordées, reflétant la réalité des services, depuis la greffe et la dialyse, le vécu de conscience altérée, l'état de coma, de réveil, à la mort cérébrale ou au don d'organe.
[Extrait résumé éditeur]
BACKGROUND: Lung transplant recipients who experience serious illness could benefit from specialty palliative care (SPC), but evidence suggests that referral has been rare.
OBJECTIVE: Examine the characteristics of post-transplant SPC encounters, utilization trends, and patient characteristics associated with SPC at a center with established SPC services.
DESIGN: Retrospective cohort study of SPC utilization by 597 lung transplant recipients transplanted between 2010 and 2015. We collected data on pretransplant demographics and post-transplant SPC encounters, including timing, location, and referral reasons. Cumulative incidence of SPC and patient characteristics associated with SPC were examined by competing risks methods. Utilization in the first two post-transplant years was compared between subcohorts defined by year of transplantation.
RESULTS: SPC cumulative incidence was 27% and 43% at one and five years. More than 60% of encounters occurred in the first post-transplant year including 34% during the index transplant hospitalization. Over 90% of encounters occurred in the inpatient setting. The majority of consults were for symptom management. From 2010 to 2015 inpatient utilization in the first two post-transplant years increased from 23% to 42%, and outpatient utilization increased from 2% to 16%. Accounting for increasing utilization, pretransplant SPC and double-lung transplantation were associated with greater incidence of post-transplant SPC.
CONCLUSIONS: Lung transplant recipients may have palliative care needs early after transplantation. Increasing utilization suggests greater awareness of or changing attitudes about the utility of SPC for lung transplant recipients. Understanding transplant recipients' palliative care needs and transplant physicians' views of SPC is critical to improving the provision of SPC in lung transplantation.
OBJECTIVES: To describe the impact of advance care planning (ACP) education on nurses' confidence in ACP knowledge and practice and to identify barriers to facilitate ACP conversation in a bone marrow transplantation unit.
SAMPLE & SETTING: 60 nurses working in the bone marrow transplant unit at Oregon Health and Science University, an academic medical center.
METHODS & VARIABLES: The aim of this quality improvement project was to increase ACP conversations by nurses. The authors used a single-group pre-/post-test design to assess the effectiveness of a 30-minute educational intervention in changing nurses' confidence and practice. Group interviews were conducted to identify barriers to ACP.
RESULTS: The educational intervention increased nurses' confidence in knowledge about ACP. The number of nurses who discussed ACP with patients also increased, but it was not statistically significant. Lack of time, inefficient workflow, and concerns about questioning providers' understanding of patient preferences were identified as barriers for nurses engaging in and documenting ACP conversations.
IMPLICATIONS FOR NURSING: In addition to appropriate education, strategies that help tailor ACP practice to fit into nurse workflow and promote collaboration with other healthcare team members are needed to change nurses' ACP practice.
Luc Argent a 19 ans, il y a trois ans il a eu une greffe de cœur mais son corps la rejette. Il en a marre des hôpitaux, des médecins, des médicaments. Il ne se voit pas revivre tout le cheminement pour une deuxième greffe qui a peu de chances de prendre. Il s’organise un road trip avec sa meilleure amie Evelyne pour l’Oregon, état où le suicide assisté est légal. Ira-t-il jusqu’au bout de sa démarche ?
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.
Parenting a child with chronic kidney disease has a profound impact on the parental caregivers across social, emotional, and physical functioning. As the survival rates for children with chronic kidney disease increase, the demands on parents caring for these children intensify. The aim of this study was to understand the lived experience of being a mother of a child who has undergone kidney transplantation. Seven mothers caring for children with chronic kidney disease in Ontario, Canada participated in in-depth interviews that were analyzed according to the principles of hermeneutic phenomenology. The present study presents the findings concerning post-traumatic growth: personal strength, new possibilities, enhanced relationships, appreciation of life and spiritual change. Recognizing positive aspects of stressful situations and the potential for growth can impact the practice of social workers and other health-care professionals. Ultimately the assistance that is provided to parent caregivers can be improved with a better understanding of the whole experience.