OBJECTIVE/HYPOTHESIS: Despite the importance of symptom management and end-of-life (EOL) care in head and neck cancers (HNC), there is little literature on care practices in this population. This study examines EOL care practice patterns using nationally established metrics.
STUDY DESIGN: Retrospective chart review.
METHODS: Review of HNC patients who were actively followed and treated (defined as one clinic note within 90 days, two within preceding 9 months, and having received treatment at our institution) and died between January 1, 2017 and December 31, 2018. The cohort was reviewed for performance on Quality Oncology Practice Initiative (QOPI®) and other metrics.
RESULTS: Of 133 patients identified, 52 met inclusion criteria. The average age at death was 69.8 years. About 59% had distant metastases, 30% had locoregional disease, 11% were undergoing primary treatment. Twenty-three percentage received chemotherapy within the last 14 days of life. Fifty percentage of patients were admitted in the last 30 days of life, and 33% died in the hospital. Fifty-four percentage of patients had either Physician Orders for Life-Sustaining Treatment or Advanced Directive on file. Eighty-one percentage of patients had any type of goals of care discussion documented. Sixty-five percentage of all patients received referrals to palliative care and 46% of all patients enrolled in hospice. The median days in hospice was 12. Having a goals of care discussion was significantly associated with utilization of palliative and hospice care.
CONCLUSIONS: Provider-documented goals of care discussions were strongly correlated to referrals and enrollment in palliative and hospice care. Areas for improvement include better documentation of treatment directives and reducing low-utility treatments.
LEVEL OF EVIDENCE: 4 Laryngoscope, 2021.
OBJECTIVE: To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions.
METHOD: Eight online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, Airiti, GARUDA Garba Rujukan Digital, and OpenGrey) from 2010 to February 5, 2020 were searched for studies investigating EoL care and the PoD for pediatric patients receiving and not receiving PC.
RESULTS: Of the 6,468 citations identified, 14 cohort studies and one case series were included. An evidence base of mainly adequate- and strong-quality studies shows that inpatient hospital PC, either with or without the provision of home and community PC, was found to be associated with a decrease in intensive care use and high-intensity EoL care. Conflicting evidence was found for the association between PC and hospital admissions, length of stay in hospital, resuscitation at the time of death, and the proportion of hospital and home deaths.
SIGNIFICANCE OF RESULTS: Current evidence suggests that specialist, multidisciplinary involvement, and continuity of PC are required to reduce the intensity of EoL care. Careful attention should be paid to the need for a longer length of stay in a medical setting late in life, and earlier EoL care discussion should take place with patients/caregivers, especially in regard to attempting resuscitation in toddlers, adolescents, and the young adult population. A lack of robust evidence has identified a gap in rigorous multisite prospective studies utilizing data collection.
Objective: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge.
Methods: A mixed-method integration of hospice 2013–17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences).
Results: 5648 hospice admissions occurred between 2013–17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines.
Conclusion: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services.
Practice Implications: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed.
BACKGROUND: Despite well-documented disparities in end-of-life (EOL) care, little is known about whether patients with low health literacy (LHL) received aggressive EOL care.
OBJECTIVE: This study examined the association between health literacy (HL) and EOL care intensity among Medicare beneficiaries.
METHOD: We conducted a retrospective analysis of Medicare fee-for-service decedents who died in July-December, 2011. ZIP-code-level HL scores were estimated from the 2010-2011 Health Literacy Data Map, where a score of 225 or lower was defined as LHL. Aggressive EOL care measures included repeated hospitalizations within the last 30 days of life, no hospice enrollment within the last 6 months of life, in-hospital death, and any of above. Using hierarchical generalized linear models, we examined the association between HL and aggressive EOL care.
RESULTS: Of 649,556 decedents, the proportion of decedents who received any aggressive EOL care among those in LHL areas was 82.7%, compared to 72.7% in HHL areas. In multivariable analyses, decedents residing in LHL areas, compared to those in HHL areas, had 31% higher odds of aggressive EOL care (adjusted odds ratio [AOR] 1.31; 95% confidence interval [CI]:1.21-1.42), including higher odds of no hospice use (AOR 1.35; 95% CI: 1.27-1.44), repeated hospitalization (AOR 1.07; 95% CI: 1.01-1.14) and in-hospital death (AOR 1.21; 95% CI: 1.13-1.29).
CONCLUSION: Medicare beneficiaries who resided in LHL areas were likely to receive aggressive EOL care. Tailored efforts to improve HL and facilitate patient-provider communications in LHL areas could reduce EOL care intensity.
Certaines hospitalisations de personnes âgées sont qualifiées de « non pertinentes » parce qu’elles y reçoivent une prise en charge médicale, paramédicale et sociale qui pourrait être rendue à domicile ou dans des structures plus efficientes et mieux adaptées à leurs besoins ou à leurs situations. L’étude PAGE a pour objectif de comprendre les raisons des hospitalisations non pertinentes des personnes âgées ayant des troubles cognitifs légers à modérés et de décrire les conséquences sur la fin de leur vie. Comment penser, anticiper et adapter leurs besoins en aide et en soins relatifs à cette période de vie selon leurs souhaits ? 17 entretiens individuels semi-directifs ont été effectués auprès de personnes âgées, leur entourage personnel (n = 8) et professionnel (n = 14). Pour explorer leurs trajectoires, les entretiens ont été réalisés à leur entrée à l’hôpital puis renouvelés à chaque étape de leur parcours durant 6 mois. Les hospitalisations non pertinentes cristallisent la dénégation de la perte d’autonomie fonctionnelle. Alors que les personnes vivent des pertes, les discussions et prises de décisions pérennes quant à leur choix de fin de leur vie sont repoussées. Les hospitalisations non pertinentes surviennent lorsque ce quotidien n’est plus adapté et obligent l’entourage ou la personne âgée à prendre des décisions urgentes et contraires à leurs souhaits et besoins.
BACKGROUND: Systemic anti-cancer treatment (SACT) can improve symptoms and survival in patients with incurable cancer but there may be harmful consequences. Information regarding the use of SACT at the end-of-life and its impact on patients has not been described in Ireland.
AIMS: The study aimed to quantify and describe the use of SACT at end-of-life. The primary outcome of interest was the number of patients who received treatment in the last 12, 4 and 2 weeks of life. Secondary outcomes included the frequency of admissions and procedures, location of death, and timing of specialist palliative care (SPC) referral.
METHODS: Retrospective review. Fisher exact testing was used for analyses. Patients were included if they died between January 2015 and July 2017 and received at least 1 dose of treatment for a solid tumor malignancy.
RESULTS: Five hundred and eighty two patients were included. Three hundred and thirty eight (58%), 128 (22%) and 36 (6%) received treatment in the last 12, 4 and 2 weeks of life respectively. Patients who received chemotherapy in the last 12 weeks of life were more likely to be admitted to hospital, undergo a procedure, and die in hospital than those who did not (P < 0.001 for all). Median time of SPC referral before death was shorter in those patients who received chemotherapy than those who did not (61 v129 days, p = 0.0001).
CONCLUSION: Patients who received chemotherapy had a higher likelihood of hospital admission, invasive procedure, and in-hospital death. They were less likely to have been referred early to SPC services.
Background: Head and neck cancer was the fourth-most common cause of cancer death among Taiwanese men in 2018. Hospice care has been proven to reduce the use of invasive medical interventions and expenditures in caring for cancer patients.
Aim: This study examined the effects of hospice care for terminal head and neck cancer patients.
Design: A matched cohort study was used to compare the use of invasive interventions and expenditures among hospice care and nonhospice care patients.
Setting/Participants: The investigated patients consisted of patients who died of head and neck cancer in Taiwan from 2004 to 2013 and were included in the Registry for Catastrophic Illness Patients in Taiwan and the Taiwan National Health Research Insurance Database.
Results: A total of 45,948 terminal head and neck cancer patients were identified, and 9883 patients remained in each group after matching for comorbidities. After that matching, the rates of intensive care unit admission (23.9% vs. 38.94%, p < 0.0001), endotracheal intubation (10.05% vs. 31.32%, p < 0.0001), cardiopulmonary resuscitation (2.93% vs. 20.18%, p < 0.0001), defibrillation (0.51% vs. 4.36%. p < 0.0001), ventilator use (21.92% vs. 46.47%, p < 0.0001), blood transfusion (71.25% vs. 73.45%, p = 0.006), and hemodialysis (1.06% vs. 3.26%. p < 0.0001) were significantly lower in the hospice group than the nonhospice group, although the rates of parenteral nutrition for the two groups were similar (7.74% vs. 7.97%, p = 0.5432). The mean medical expenditure per person in the six months before death was 460,531 New Taiwan Dollar (NTD) for the nonhospice group and 389,079 NTD for those provided hospice care for more than three months, which was the lowest amount among various hospice enrollment durations.
Conclusions: Hospice care can effectively reduce the use of invasive medical interventions in caring for terminal head and neck cancer patients and may improve their quality of death. Moreover, hospice care enrollment for more than three months can save on unnecessary medical expenditures for terminal head and neck cancer patients.
OBJECTIVE: Health disparities are pervasive in nursing homes (NHs), but disparities in NH end-of-life (EOL) care (ie, hospital transfers, place of death, hospice use, palliative care, advance care planning) have not been comprehensively synthesized. We aim to identify differences in NH EOL care for racial/ethnic minority residents.
DESIGN: A systematic review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and registered in PROSPERO (CRD42020181792).
SETTING AND PARTICIPANTS: Older NH residents who were terminally ill or approaching the EOL, including racial/ethnic minority NH residents.
METHODS: Four electronic databases were searched from 2010 to May 2020. Quality was assessed using the Newcastle-Ottawa Scale.
RESULTS: Eighteen articles were included, most (n = 16) were good quality and most (n = 15) used data through 2010. Studies varied in definitions and grouping of racial/ethnic minority residents. Four outcomes were identified: advance care planning (n = 10), hospice (n = 8), EOL hospitalizations (n = 6), and pain management (n = 1). Differences in EOL care were most apparent among NHs with higher proportions of Black residents. Racial/ethnic minority residents were less likely to complete advance directives. Although hospice use was mixed, Black residents were consistently less likely to use hospice before death. Hispanic and Black residents were more likely to experience an EOL hospitalization compared with non-Hispanic White residents. Racial/ethnic minority residents experienced worse pain and symptom management at the EOL; however, no articles studied specifics of palliative care (eg, spiritual care).
CONCLUSIONS AND IMPLICATIONS: This review identified NH health disparities in advance care planning, EOL hospitalizations, and pain management for racial/ethnic minority residents. Research is needed that uses recent data, reflective of current NH demographic trends. To help reduce EOL disparities, language services and cultural competency training for staff should be available in NHs with higher proportions of racial/ethnic minorities.
Purpose: Performance status (PS) is assessed during cancer treatment to determine clinical trial eligibility, appropriateness for treatment, and need for supportive care. There is rising interest for patients to report this information directly. We determined whether clinician- and patient-reported PS were equally associated with mortality and service utilization in patients with cancer.
Methods: A secondary analysis was conducted using data from an radiotherapy plus chemotherapy in which 441 patients with advanced cancer and clinicians reported PS using the Eastern Cooperative Oncology Group scale. Simple kappa statistics measured agreement between clinician-reported performance status (cPS) and patient-reported performance status (pPS). Associations of cPS and pPS with emergency department (ED) and hospital visits and overall survival were evaluated via Cox regression, competing risk regression, and Fisher's exact tests.
Results: cPS and pPS correlated weakly (kappa = 0.27). Both pPS and cPS were associated with survival, ED visits, and hospitalizations, but only cPS remained associated after adjustment (survival: HR, 1.75; P < .0001). The first available cPS predicted mortality more strongly than the first available pPS (HR for death, comparing PS = 1 v 0: 2.05 for cPS and 1.41 for pPS). When pPS questionnaires were repeated over time and averaged, associations with outcomes were stronger as measured by AIC model fit. Both pPS and cPS were associated with EQ-5D subcomponents (eg, 75%-77% with no usual activity deficits for PS 0, v 42%-51% for PS = 1).
Conclusion: Both clinician-reported PS and patient-reported PS provide useful information and can be considered for clinical trials and routine care.
Providing person-centred end-of-life care at home and in care homes during the COVID-19 pandemic has been challenging. These challenges extend beyond the interpersonal communication barriers created by wearing personal protective equipment (PPE) for infection control. Visors and facemasks make it harder to hear soft voice tones or read facial expressions, which are key tools in empathetic communication. Traditional models of care, based on predominantly face-to-face multidisciplinary clinical consultations, have been radically overhauled in the UK and other countries worse affected by the pandemic (Antunes et al, 2020; Costantini et al, 2020). The unprecedented rapid adoption of technology, including video and telehealth consultations, alongside virtual ward rounds and online team meetings, reduces infection risks and may have the advantage of enabling faster access to clinical advice (Powell et al, 2020). However, concerns that health professional home visits would reduce has led to an increased focus on care provision by family members, including, potentially, the administration of end-of-life care medications (Antunes et al, 2020; Johnson et al, 2020). The pandemic has imposed massive stress on care resources, and the changes in healthcare service delivery after COVID-19 look set to be substantial (Antunes et al, 2020; Kasaraneni, 2020). New models of care delivery have also created opportunities for nurses supporting people in community settings to develop their role and skills
As the United States population ages, a higher share of adults is likely to use long-term services and supports. This change increases physicians' need for information about assisted living and residential care (AL/RC) settings, which provide supportive care and housing to older adults. Unlike skilled nursing facilities, states regulate AL/RC settings through varying licensure requirements enforced by state agencies, resulting in differences in the availability of medical and nursing services. Where some settings provide limited skilled nursing care, in others, residents rely on resident care coordinators, or their own physicians to oversee chronic conditions, medications, and treatments. The following narrative review describes key processes of care where physicians may interact with AL/RC operators, staff, and residents, including care planning, managing Alzheimer's disease and related conditions, medication management, and end-of-life planning. Communication and collaboration between physicians and AL/RC operators are a crucial component of care management.
Purpose: The purpose of this study was to investigate whether routine insertion of PICC at admission to a hospice-palliative care (HPC) unit is acceptable in terms of safety and efficacy and whether it results in superior patient satisfaction compared to usual IV access.
Materials and Methods: Terminally ill cancer patients were randomly assigned to two arms: routine PICC access and usual IV access arm. The primary endpoint was IV maintenance success rate, defined as the rate of functional IV maintenance until the intended time (discharge, transfer, or death).
Results: A total of 66 terminally ill cancer patients were enrolled and randomized to study arms. Among them, 57 patients (routine PICC, 29; usual IV, 28) were analyzed. In the routine PICC arm, mean time to PICC was 0.84 (range, 0-3) days, 27 patients maintained PICC with function until the intended time. In the usual IV arm, 11 patients maintained peripheral IV access until the intended time, and 15 patients underwent PICC insertion. The IV maintenance success rate in the routine PICC arm (27/29, 93.1%) was similar to that in the usual IV arm (26/28, 92.8%, p=0.958). Patient satisfaction at day 5 was better in the routine PICC arm (97%, 'a little comfort' or 'much comfort') compared with the usual IV arm (21%) (p <0.001).
Conclusion: Routine PICC insertion in terminally ill cancer patients was comparable in safety and efficacy and resulted in superior satisfaction compared with usual IV access. Thus, routine PICC insertion could be considered at admission to the HPC unit (NCT03299868).
BACKGROUND: Over 90 million Americans suffer from advanced illness (AI) and spend their last days of life in critical care units receiving costly, unwanted, aggressive medical care.
OBJECTIVE: Evaluate the impact of a specialized care model in medical/surgical units for hospitalized geriatric patients and patients with complex care requirements where designated AI beds align care with patient's wishes/goals, minimize aggressive interventions, and influence efficient resource utilization.
DESIGN: US based multi-facility retrospective, longitudinal descriptive study of screened positive AI patients in AI Beds (N = 1,237) from 3 facilities from 2015 to 2017.
RESULTS: Patient outcomes included 60% referrals to AI beds from ICU, a decrease of 39-49% in average ICU LOS, a 23% reduction of AI bed patient expirations, 9.0% referrals to hospice, and projected cost savings of $4,361.66/patient, US dollars.
CONCLUSION: Allocating AI beds to deliver care to AI patients resulted in a decreased cost of care by reducing overall hospital LOS, mortality, and efficient use of both critical care and hospital resources.
OBJECTIVE: To examine whether demographic, dementia-related, and control-related variables predict preparation for future care needs (PFCN) in a sample of middle-aged and older adults. PFCN is defined in this study as a self-perceived sense of preparedness for one's own future care needs, including general awareness of future care needs, gathering relevant information, decision-making about care preferences, concrete planning, and non-avoidance of care planning.
METHODS: Participants (N = 122; age 40 to 88 years: M = 65.83, SD = 9.80) completed self-report measures in an in-person study. Hierarchical multiple regression was calculated to predict PFCN.
RESULTS: Being female, having more positive dementia attitudes, higher attribution to powerful others for health condition(s), and more completed end-of-life (EOL) planning significantly predicted greater PFCN.
CONCLUSION: Findings indicate a positive relationship between objective (completed EOL planning items) and subjective (PFCN) components of planning, thus highlighting the importance of taking concrete steps in EOL planning to yield greater feelings of preparedness, which has been associated with positive psychological outcomes.
OBJECTIVE: To determine the prevalence of life support limitation (LSL) in patients who died after at least 24h of a pediatric intensive care unit (PICU) stay, parent participation and to describe how this type of care is delivered.
METHODS: Retrospective cohort study in a tertiary PICU at a university hospital in Brazil. All patients aged 1 month to 18 years who died were eligible for inclusion. The exclusion criteria were those brain death and death within 24h of admission.
RESULTS: 53 patients were included in the study. The prevalence of a LSL report was 45.3%. Out of 24 patients with a report of LSL on their medical records only 1 did not have a do-not-resuscitate order. Half of the patients with a report of LSL had life support withdrawn. The length of their PICU stay, age, presence of parents at the time of death, and severity on admission, calculated by the Pediatric Index of Mortality 2, were higher in patients with a report of LSL. Compared with other historical cohorts, there was a clear increase in the prevalence of LSL and, most importantly, a change in how limitations are carried out, with a high prevalence of parental participation and an increase in withdrawal of life support.
CONCLUSIONS: LSLs were associated with older and more severely ill patients, with a high prevalence of family participation in this process. The historical comparison showed an increase in LSL and in the withdrawal of life support.
BACKGROUND/OBJECTIVES: To evaluate differences in end-of-life cost trajectories for cancer patients treated through Medicare versus by the Veterans Health Administration (VA).
DESIGN: A retrospective analysis of VA and Medicare administrative data from FY 2010 to 2014. We employed three-level generalized estimating equations to evaluate monthly cost trajectories experienced by patients in their last year of life, with patients nested within hospital referral region.
SETTING: Care received at VA facilities or by Medicare-reimbursed providers nationwide.
PARTICIPANTS: A total of 36,401 patients dying from cancer and dually enrolled in VA and Medicare.
MEASUREMENTS: We evaluated trajectories for total, inpatient, outpatient, and drug costs, using the last 12 months of life. Cost trajectories were prioritized as costs are not directly comparable across Medicare and VA. Patients were assigned to be VA-reliant, Medicare-reliant or Mixed-reliant based on their healthcare utilization in the last year of life.
RESULTS: All three groups experienced significantly different cost trajectories for total costs in the last year of life. Inpatient cost trajectories were significantly different between Medicare-reliant and VA-reliant patients, but did not differ between VA-reliant and Mixed-reliant patients. Outpatient and drug cost trajectories exhibited the inverse pattern: they were significantly different between VA-reliant and Mixed-reliant patients, but not between VA-reliant and Medicare-reliant patients. However, visual examination of cost trajectories revealed similar cost patterns in the last year of life among all three groups; there was a sharp rise in costs as patients approach death, largely due to inpatient care.
CONCLUSION: Despite substantially different financial incentives and organization, VA- and Medicare-treated patients exhibit similar patterns of increasing end-of-life costs, largely driven by inpatient costs. Both systems require improvement to ensure quality of end-of-life care is aligned with recommended practice.
Objectives: To investigate the rate and patterns of accumulation of frailty manifestations in relationship to all-cause mortality and whether there is a point in the progression of frailty beyond which the process becomes irreversible and death becomes imminent (a.k.a. point of no return).
Design: Longitudinal observational study.
Setting: Community or a non-nursing home residential care setting.
Participants: Two thousand five hundred and fifty seven robust older adults identified at baseline in 2011 with follow-up for all cause mortality between 2011 and 2018.
Measurements: Frailty was measured by the physical frailty phenotype. Cox models were used to study the relationships of the number of frailty criteria (0–5) at each point in time and its accumulation patterns with all cause mortality. Markov state-transition models were used to study annual transitions between health states (i.e., frailty, recovery, and death) after becoming frail among those with frailty onset (n = 373).
Results: There was a nonlinear association between greater number of frailty criteria and increasing risk of mortality, with a notable risk acceleration after having accumulated all five criteria (hazard ratio (HR) = 32.6 vs none, 95% confidence interval (CI) = 15.7–67.5). In addition, the risk of one year mortality tripled, and the likelihood of recovery (i.e., reverting to be robust or pre-frail) halved among those with five frailty criteria compared to those with three or four criteria. A 50% increase in mortality risk was also associated with frailty onset without (vs with) a prior history of pre-frailty (HR = 1.51, 95% CI = 1.20–1.90).
Conclusion: Both the number and rate of accumulation of frailty criteria were associated with mortality risk. Although there was insufficient evidence to declare a point of no return, having all five frailty criteria signals the beginning of a transition toward a point of no return. Ongoing monitoring of frailty progression could aid clinical and personal decision-making regarding timing of intervention and eventual transition from curative to palliative care.
PURPOSE: The purpose of this quality improvement project was to increase pharmacist involvement in the outpatient hospice transition process to improve care of veterans, prevent medication errors, and to ensure medications are provided to the patient via the appropriate pharmacy.
METHODS: This project began with implementation of a pilot process for the pharmacist to complete medication reconciliation for each patient admitted to non-Veterans Affairs (VA) hospice care from the Omaha VA Medical Center. The second step of this project was completion of a retrospective chart review of the interventions made. Statistical analysis was completed via descriptive statistics.
RESULTS: A total of 21 patients were eligible for this study. The mean age was 78 years. The average total number of medications per veteran before and after medication reconciliation for VA meds were 13 and 4 and for non-VA meds were 4 and 6, respectively. The average total cost savings for one fill of all medications changed to non-VA was estimated to be $40.08. The pharmacist noted on average 12.6 medication discrepancies during medication reconciliation per veteran. Just less than half of the clinical recommendations made by the pharmacist were accepted by the providers.
CONCLUSIONS: All veterans admitted to non-VA hospice care had at least one medication discrepancy noted by the pharmacist during medication reconciliation. A majority of the veterans had at least one VA medication changed to non-VA since hospice was now prescribing and providing. The cost savings on average appear to outweigh the time spent on medication reconciliation by the pharmacist.
BACKGROUND: It is estimated that in 2050 one quarter of the population in Europe will be aged 65 years and older. Although the added value of a palliative care team is emphasized in the literature, the impact of the palliative care team on the symptom burden in older non-cancer patients is not yet well established.
OBJECTIVES: To structurally measure symptoms and to investigate whether proactive consultation with a palliative care team results in improvement of symptoms.
DESIGN: This study has a prospective comparative design.
SETTING/PARTICIPANTS: Older patients, admitted to a Dutch University Medical Centre for who a health care professional had a negative response to the Surprise Question, were selected.
MEASUREMENTS, RESULTS: In period one, 59 patients completed the Utrecht Symptom Diary (USD) at day one of admission and after 7 days. In period 2 (n = 60), the same procedure was followed; additionally, the palliative care team was consulted for patients with high USD-scores. Significant improvement on the USD Total Distress Score (TSDS) was observed in both groups without a difference between the 2 periods. This study showed an association between consultation of the palliative care team and improvement on USD TSDS (adjusted odds ratio: 4.9; 95% confidence interval: 1.816-13.198), despite low follow-up rate of advices (approximately 50%).
CONCLUSIONS: This study emphasizes the importance of creating awareness for consulting the palliative care team. Further research should focus on assessing the reason behind the low follow-up rate of the advice given and understanding the specific advices contributing to symptom improvement.
PURPOSE: Pediatric palliative care (PC) is an evolving field and involves a comprehensive approach to care of children with cancer. The goal of this paper was to explore how pediatric oncologists define, interpret, and practice pediatric palliative care in their clinical settings.
METHODS: The study used the grounded theory approach to data collection and analysis. Twenty-one pediatric oncologists from six pediatric cancer centers across Israel were interviewed. Data was analyzed using line-by-line coding.
RESULTS: The analysis resulted in a four-tiered conceptual model. This model included the following categories: (1) ill-defined concept; (2) philosophies of palliative care; (3) trajectory of palliative care; and (4) palliative care treatment goals.
CONCLUSION: The findings illustrate the current conceptualizations of pediatric palliative care among the pediatric oncology community in Israel. The conceptual model documents their understanding of pediatric palliative care as a philosophical approach and the challenges they face in differentiating between palliative care and standard pediatric oncology care. Pediatric palliative care is a highly needed and valued sub-specialty. The findings from this study highlight the importance for its continued development in Israel, as it can reduce the suffering of children and their families. Concurrently, pediatric oncologists need to have more resources and access to explicit knowledge of the conceptual and practical aspects of both primary and specialized pediatric palliative care.