Background: The opioid epidemic has spurred investigations for nonopioid options, yet limited research persists on medical marijuana's (MMJ) efficacy in managing cancer-related symptoms.
Objective: We sought to characterize MMJ's role on symptomatic relief and opioid consumption in the oncologic population.
Design: Retrospective chart review of MMJ-certified oncology patients was performed. Divided patients into MMJ use [MMJ(+)] versus no use [MMJ(-)], and Edmonton Symptom Assessment System (ESAS)-reported pain cohorts: “mild-moderate” versus “severe.”
Measurements: Medical records were reviewed for ESAS, to measure physical and emotional symptoms, and opiate consumption, converted into morphine milligram equivalents (MME). Minimal clinically important differences were determined. Wilcoxon signed-rank tests determined statistical significance between MMJ-certification and most recent palliative care visit.
Results: Identified 232 patients [95/232 MMJ(-); 137/232 MMJ(+)]. Pain, physical and total ESAS significantly improved for total MMJ(-) and MMJ(+); however, only MMJ(+) significantly improved emotional ESAS. MMJ(-) opioid consumption increased by 23% (97.5–120 mg/day MME, p = 0.004), while it remained constant (45–45 mg/day MME, p = 0.522) in MMJ(+). Physical and total ESAS improved in mild-moderate-MMJ(-) and MMJ(+). Pain and emotional symptoms worsened in MMJ(-); while MMJ(+)'s pain remained unchanged and emotional symptoms improved. MMJ(-) opioid consumption increased by 29% (90–126 mg/day MME, p = 0.012); while MMJ(+)'s decreased by 33% (45–30 mg/day MME, p = 0.935). Pain, physical, emotional, and total ESAS scores improved in severe-MMJ(-) and MMJ(+); opioid consumption reduced by 22% in MMJ(-) (135–106 mg/day MME, p = 0.124) and 33% in MMJ(+) (90–60 mg/day MME, p = 0.421).
Conclusions: MMJ(+) improved oncology patients' ESAS scores despite opioid dose reductions and should be considered a viable adjuvant therapy for palliative management.
Context: Early integration of palliative care (PC) into adult oncology practice has been shown to improve quality of life and health care utilization; however, little is known about PC in young adults with cancer.
Objectives: Our primary objective was to determine rates and timing of PC consultation in young adult patients with advanced solid tumor cancer at a single institution.
Methods: We conducted a retrospective analysis of young adults of age 18–39 years with advanced solid tumor malignancy at an urban academic medical center between June 1, 2014 and June 30, 2015.
Results: Of 129 patients identified, 70 of 129 (54%) had a PC consult and 34 of 70 were inpatient-only consults. PC consults occurred for a median of 104 days before death, and for those with inpatient-only consults, PC consults occurred for a median of 18 days. Patients with worse recent Eastern Cooperative Oncology Group (ECOG) performance status were more likely to have had a PC consult (p < 0.001). Of the patients who died during the study period, patients with PC consults were more likely to have been hospitalized (72% vs. 47%), in the intensive care unit (21% vs. 0%), in the emergency room (ER) (72% vs. 47%), and have received chemotherapy (17% vs. 0%) within 30 days of death compared with those who did not have a consult; however, these differences were not statistically significant.
Conclusion: In this analysis, over half of young adults with advanced solid tumors received PC consults. PC consult typically occurred for one year after diagnosis and about three months before death. Additional research is needed to identify how to better integrate PC early in this patient population and assess the resulting impact.
CONTEXT: Early palliative care (PC) has been shown to improve the quality of life of children with cancer, yet referral practices by pediatric oncology providers remains inconsistent and few patients receive a formal PC consult.
OBJECTIVES: We sought to describe patient characteristics used by oncologists for PC referral and identify ways to improve PC integration into the care for children with cancer.
METHODS: This mixed-methods study used semi-structured audiotaped interviews to explore the patient or disease characteristics used by pediatric oncology providers to trigger PC referral. Conventional content analysis was applied to interview transcripts.
RESULTS: 77 participants with diverse experience were interviewed. Over 75% of participants reported that PC was consulted "too late" and cited communication and systems issues as the top barriers. A majority of participants (85%) stated that a screening tool would be helpful to standardize referral practices to PC. Characteristics such as poor prognosis (88%), symptom management (86%), comorbidities (65%), and psychosocial needs (65%) were commonly reported triggers that should initiate PC consultation. However, when presented with case scenarios that included these characteristics, participants did not consistently identify the PC triggers. Nearly 50% of participants stated they had received some formalized PC training, however only one third of these participants noted completing a PC rotation.
CONCLUSIONS: Our findings suggest that pediatric oncologists are committed to improving the integration of PC for their patients and that standardization of referral practices, through the use of a screening tool, would be of benefit. Additional PC education might reinforce pediatric oncologists' recognition of palliative care triggers.
BACKGROUND: Pediatric patients with sarcomas experience significant morbidity and compromised quality of life throughout their course. These times could be viewed as opportunities for increased subspecialty palliative care (PC). Systematically defining opportunities for additional PC support has not occurred in pediatric oncology. The frequency, timing, and associated factors for palliative opportunities in pediatric patients with sarcomas are unknown.
METHODS: A priori, nine palliative opportunities were defined (disease progression or relapse, admission for symptoms, social concerns or end-of-life, intensive care or bone marrow transplant admission, phase 1 trial or hospice enrollment, do-not-resuscitate status). A single-center retrospective review was conducted on patients aged 0-18 years with bone/soft tissue sarcomas who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated over quartiles from diagnosis to death.
RESULTS: Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities with the majority occurring in the last quartile of the disease course. Number and type of opportunities did not differ by demographics or diagnosis. Eighteen patients (30%) received PC consultation a median of 2.2 months (interquartile range [IQR] 11.5) prior to death. Consultation was unrelated to diagnosis or total opportunities.
CONCLUSIONS: Patients with sarcomas incur repeated events warranting subspecialty PC, which increase toward the end-of-life. Increased PC utilization may help decrease suffering and bolster family coping during these episodes. Additional work should further refine if opportunities differ across cancers, and how to incorporate this framework into clinical oncology care to prevent missed opportunities for PC.
Background: Nearly 3 million U.S. family caregivers support someone with cancer. However, oncology clinic-based service lines that proactively screen, assess, and support cancer caregivers are nearly nonexistent.
Objective: To examine first-year experiences of a nurse-led clinic-based telehealth support service (FamilyStrong) for family caregivers of patients with recently diagnosed grade IV brain tumors.
Methods: This is a retrospective evaluation of operational outcomes from initial implementation of the FamilyStrong Service, developed in partnership with Caregiver and Bereavement Support Services at the University of Alabama at Birmingham (UAB) and the UAB Center for Palliative and Supportive Care. From August 2018 to December 2019, 53 family caregivers were proactively identified and enrolled by a palliative care nurse, working approximately one day/week, who performed monthly caregiver distress thermometer screenings by phone and provided emotional, educational, problem-solving, and referral support.
Results: Enrolled family caregivers were a mean age of 53.5 years and mostly female (62.3%), full- or part-time employed (67.9%), and the patient's spouse/partner (79.3%). Caregivers provided support 6.7 days/week for 11.2 hours/day. The palliative care nurse performed 235 distress screenings and provided support that included 68 documented instances of emotional, problem-solving, and educational support, 41 nurse-facilitated communications with the neuro-oncology team about patient issues, and 24 referrals to UAB and community services (e.g., counseling). The most common problems caregivers wanted assistance with included: managing their relative's health condition and symptoms (51%), coordinating care/services (21%), and planning for the future/advance care planning (17%).
Discussion: The FamilyStrong Program is among the first "real world" oncology clinic-based formal support services for advance cancer family caregivers.
Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider “best” practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (=10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a “good” death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with =10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of “good” pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education
Background: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life.
Methods: Oncology patients (ages 0–25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015–06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017–06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared.
Results: A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084).
Conclusion: A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.
BACKGROUND: Early palliative care referral for patients with advanced cancer has demonstrable benefits but is underutilized. We sought to characterize medical oncologists' perceptions about palliative care referral in their clinical practices.
METHODS: We conducted 4 focus groups with a national sample of medical oncologists to elicit perspectives about the optimal timing of and barriers to palliative care referral for patients with cancer. We used qualitative content analysis to uncover themes related to early integration of palliative care into standard oncologic practice.
RESULTS: Study participants readily acknowledged the evidence supporting early palliative care referral. However, medical oncologists identified patient-centered and physician-centered barriers to widespread adoption of early palliative care. Patient-centered barriers included patients' and families' perceptions or misperceptions of the role of palliative care. Additionally, physicians themselves described acting as a barrier to palliative care referral because they were concerned that palliative care physicians may interfere with the plan of care, or offer options that were not endorsed by the medical oncologist. Medical oncologists depicted themselves having authority over the timing of palliative care referral, and as granting limited autonomy to other clinical team members in counseling patients about advanced care planning.
CONCLUSIONS: Medical oncologists are hesitant to adopt the practice of early palliative care referral because they are concerned that other physicians may disrupt a patient's treatment plan. Physician-centered barriers may delay integration of palliative care, and future efforts to promote a collaborative approach to advanced care planning may improve patient-centered outcomes through access to early palliative care.
Background: Home death is considered to be a marker of good death. Little is known about the place of death and its determinants in patients with cancer in Jordan.
Methods: A retrospective analysis of regularly collected data of cancer patients who had a palliative care consultation at King Hussein Cancer Center and died between 2011 and 2012. Variables analyzed were related to the patient, disease, and palliative care services. Patient-related factors included age at death, gender, place of residence, and code status; disease-related variables were cancer type (solid vs hematological), major primary site, and time from cancer diagnosis to death; palliative care service–related variables included time of consultation for palliative care services to death, location of first palliative encounter (outpatient clinic vs hospital floor), multidisciplinary palliative home care teams involvement, and the number of home care visits before death. We examined the association between each variable and place of death using Pearson’s chi-square and the Mann-Whitney tests. Factors with statistical significance of P value < 0.1 were entered into multivariate logistic regression model.
Results: Among 630 patients, 80 (12.7%) died at home. Univariate analysis showed the following to be significantly associated with dying at home: male gender, age more than 65 years old, earlier palliative care involvement, and involvement of home care services (P value < 0.05). Independent predictors for dying at home were male gender, age more than 65 years old, and involvement of home care services.
Conclusions: Hospital death is more prevalent than home death in cancer patients in Jordan. Involvement of home care services can help achieve the goal of dying at home.
OBJECTIVE: to analyze the strategies implemented by nurses to reconfigure palliative oncological care due to the hospital accreditation process in Hospital do Câncer IV (Hospital of Cancer IV).
METHOD: qualitative research of historical-social approach, whose direct sources in use were written documents and four spoken accounts.
RESULTS: implemented strategies were: creation of the Nursing Division; nursing staff management; consolidation of Continuing Education sector; creation of Internal Nursing Bylaws through development of norms and routines; meetings; discussion of clinical cases; training and classes; creation of Núcleo de Assistência de Enfermagem (Nursing Assistance Core); creation of a tumoral and ostomy wound-dressing ambulatory; and organization of the 5th Vital Sign Forum. Final considerations: nurses, supported by an alliance with the institution directors, implemented effective strategies and reached significant advancement. As they took part in this endeavor, they became legitimate spokespeople of an authorized discourse in the field of oncological nursing care in Brazil.
PURPOSE: Benefits of early palliative referral in oncology are well documented. Palliative care referral "triggers" may help identify patients for referral. Many triggers have been proposed, but are not commonly used. This study reviewed the timing of palliative care involvement for patients in a tertiary referral oncology hospital, and whether the use of a trigger tool prior to admission would have facilitated earlier referral.
METHODS: This was a retrospective cohort study of cancer patients who died during an unplanned admission between November 2014 and October 2015. A literature review identified seven palliative care referral tools which were included in this analysis, and compared by identifying common themes. Each tool was applied to patients by reviewing electronic patient records. Timing of palliative referral and whether patients met any triggers within 6 months before their terminal admission were assessed.
RESULTS: A total of 159 patients were identified. Forty-six percent were referred to palliative care prior to terminal admission. Application of 6 out of 7 trigger tools would have resulted in the majority of patients (up to 91.2%) referred to palliative care prior to admission. Most patients (52.2%) were referred only during their terminal admission. Patients known to palliative care before admission (N = 73) were reviewed quicker than those who were not (N = 86) (median (range) 1 day (0-23 days) versus 5 days (0-59 days), p < 0.00001).
CONCLUSIONS: In this patient cohort, a palliative referral trigger tool may have proactively identified most patients prior to their terminal admission. Prospective testing of trigger tools in oncology populations is warranted.
Shared decision-making in cancer care, where we move away from the paternalistic "the doctor knows best" attitude to involving the patient in decisions regarding her or his health, is now universally accepted in western societies. However, in many situations this is easier said than done. For instance, if the interaction with the patient is not performed in a skillful manner, shared decision-making can make the patient feel unsafe - shouldn't the specialist know how to treat a serious disease such as cancer? Why would the doctor ask the patient about this? In other cases, what the patient wants in unrealistic, for example a severely frail patient aged 85 years with more than one life-limiting comorbidity who is diagnosed with an advanced cancer and has a goal of living to be at least 100 years. And what does a patient with advanced dementia want in the context of a cancer disease? In this perspectives piece, we will describe different scenarios that may arise within geriatric oncology and shared decision-making, make recommendations about how to handle such situations, and provide some food for thought.
OBJECTIVE: This qualitative study sought to obtain feedback from stakeholder cancer caregivers and bereaved family members on the implementation of bereavement risk screening in oncology.
METHODS: Semi-structured interviews were conducted with 38 family members of patients with advanced cancer (n=12) and bereaved family members (n=26) on when and how to effectively implement bereavement risk screening. Data was analyzed using thematic analysis.
RESULTS: Many participants indicated that they would be open to completing a self-report screening measure before and after the patient's death. Several suggested screening at multiple timepoints and the importance of follow-up. Participants viewed screening as an opportunity to connect to psychosocial support.
CONCLUSIONS: The findings suggest that family members appear supportive of sensitively-approached bereavement risk screening before and after a patient's death as an important component of quality psychosocial care. To optimize implementation, bereavement risk screening would involve screening at multiple timepoints and include follow-up. Findings suggest standardized risk screening using a brief, validated self-report tool would be a pragmatic approach to increasing access to bereavement care.
BACKGROUND: The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care, particularly in low-income and middle-income countries. To date, little is known regarding the timing of and barriers to palliative care integration in Eurasia.
METHODS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey evaluates physician perceptions regarding palliative care integration into pediatric oncology in Eurasia. This evidence-based survey was adapted to the regional context; iteratively reviewed by US and regional panelists; and piloted in English, Russian, and Mongolian. After distribution to physicians caring for children with cancer, statistical analysis was complemented by qualitative analysis of open-ended responses.
RESULTS: A total of 424 physician responses were received from 11 countries in the Eurasian region. Study findings demonstrated wide variability in access to palliative care experts across countries (18%-96%), with the majority of providers (64%) reporting that the initial palliative care consultation typically occurs when curative options are no longer available. Providers desired an earlier initial palliative care consultation than what currently occurs in their setting (P < .001). Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance.
CONCLUSIONS: The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care and associated barriers in Eurasia. These findings will inform the development of targeted interventions to mitigate local structural and cultural barriers to access and facilitate earlier palliative care integration in the region.
CONTEXT AND OBJECTIVES: Manual and movement therapies (MMTs) play a central role in the integrative oncology setting, significantly improving patients' quality of life (QOL). Despite research supporting the effectiveness and safety of these modalities, most oncology healthcare providers (HCPs) lack any MMT training. In this study we examine the impact of an MMT-based integrative oncology training program with the participation of an international and multi-disciplinary group of oncology HCPs. The feasibility of implementing these skills in palliative cancer care is examined.
METHODS: A 3-day, evidence-based "hands-on" teaching program was designed to train oncology HCPs working in supportive cancer care MMT modalities from traditional Chinese and Anthroposophic medicine. Pre- and post- qualitative assessment of the trainees' narratives was analyzed using ATLAS.Ti software for systematic coding.
RESULTS: The training program was attended by 30 participants from Israel (15), Germany (7), Italy (6), Turkey (1) and Cyprus (1). The group included 13 nurses, 10 physicians, 6 complementary/integrative HCPs and 1 pycho-oncologist. The Pre-training expectations which were met at post-training included gaining knowledge and practical QOL-oriented skills which could be implemented in the palliative and supportive care setting. A significant change in the attitude of trainees to touch therapy was also identified, with respondents seeing MMTs promoting patient-centered palliative care, including non-verbal communication.
CONCLUSIONS: An MMT training program for oncology HCPs for QoL-related indications is both feasible and likely to be implemented in palliative and supportive cancer care. Non-specific effects of MMTs were also recognized for their ability to facilitate patient-centered care.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
OBJECTIVES: To assess the effect of a systematic, fast-track transition from oncological treatment to specialised palliative care at home on symptom burden, to explore intervention mechanisms through patient and intervention provider characteristics and to assess long-term survival and place of death.
MEASURES: The effect of a systematic, fast-track transition from oncological treatment to specialised palliative care at home on patient symptom burden was studied in the Domus randomised clinical trial. Participants had incurable cancer and limited treatment options. The intervention was provided by specialised palliative home teams (SPT) based in hospice or hospital and was enriched with a psychological intervention for patient and caregiver dyad. Symptom burden was measured with Edmonton Symptom Assessment System (ESAS-r) at baseline, 8 weeks and 6 months follow-up and analysed with mixed models. Survival and place of death was analysed with Kaplan-Meier and Fisher's exact tests.
RESULTS: The study included 322 patients. Tiredness was significantly improved for the Domus intervention group at 6 months while the other nine symptom outcomes were not significantly different from the control group. Exploring the efficacy of intervention provider demonstrated significant differences in favour of the hospice SPT on four symptoms and total symptom score. Patients with children responded more favourably to the intervention. The long-term follow-up demonstrated no differences between the intervention and the control groups regarding survival or home deaths.
CONCLUSIONS: The Domus intervention may reduce tiredness. Moreover, the intervention provider and having children might play a role concerning intervention efficacy. The intervention did not affect survival or home deaths.
BACKGROUND: Guidelines recommend an early access to specialised palliative medicine services for patients with cancer, but studies have reported a continued underuse. Palliative care facilities deliver early care, alongside antineoplastic treatments, whereas hospice care structures intervene lately, when cancer-modifying treatments stop.
AIM: This review identified factors associated with early and late interventions of specialised services, by considering the type of structures studied (palliative vs hospice care).
DESIGN: We performed a systematic review, prospectively registered on PROSPERO (ID: CRD42018110063).
DATA SOURCES: We searched Medline and Scopus databases for population-based studies. Two independent reviewers extracted the data and assessed the study quality using Joanna Briggs Institute critical appraisal checklists.
RESULTS: The 51 included articles performed 67 analyses. Most were based on retrospective cohorts and US populations. The median quality scores were 19/22 for cohorts and 15/16 for cross-sectional studies. Most analyses focused on hospice care (n=37). Older patients, men, people with haematological cancer or treated in small centres had less specialised interventions. Palliative and hospice facilities addressed different populations. Older patients received less palliative care but more hospice care. Patients with high-stage tumours had more palliative care while women and patients with a low comorbidity burden received more hospice care.
CONCLUSION: Main disparities concerned older patients, men and people with haematological cancer. We highlighted the challenges of early interventions for older patients and of late deliveries for men and highly comorbid patients. Additional data on non-American populations, outpatients and factors related to quality of life and socioeconomic status are needed.