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.
Little is known about Marshallese palliative care practices. We explored traditional and contemporary Marshallese palliative care practices and examined generational differences. We performed three focus groups in 2011-2012 among Marshall Islanders in Hawai'i. A native speaking interpreter assisted group facilitators. Data were analyzed using classical thematic triangulation methods to identify specific Marshallese palliative care practices, the effect of economic and social challenges in Hawai'i, and generational differences comparing young and old. Nineteen persons (10 men and 9 women, youth aged 17-27 years, and elders as defined in Marshallese culture, aged 46-79) participated. A "good death" was defined as "peaceful and pain free," occurring from natural causes. Factors associated with a "good death" included gathering of family to absolve conflicts, and proper and timely cultural practices. Factors associated with "bad deaths" included young age, active suffering, accidents, suicides, "black magic/curses," or lack of timely or proper burial. Comparing generational differences, older Marshallese had differing opinions regarding preferred place of death, burial site, cultural practice preservation, artificial prolongation of life, and cremation. Barriers included mortuary fees, cost of transporting bodies, United States (US) government policies, and wait times for death certificates. Many cultural factors contribute to "good" or "bad" deaths. Attitudes toward palliative care practices differ by generation. Having previously documented different approaches by Yapese, a generalized "one size fits all" approach to Micronesians is inappropriate. Overcoming identified barriers may facilitate practices necessary for a good death in Micronesian populations in their home nations and as they migrate to communities throughout the US.
PURPOSE: Little information exists on factors that predict opioid misuse in oncology. We adopted the Screener and Opioid Assessment for Patients With Pain-Short Form (SOAPP-SF) and toxicology testing to assess for opioid misuse risk. The primary objective was to (1) identify characteristics associated with a high-risk SOAPP-SF score and noncompliant toxicology test, and (2) determine SOAPP-SF utility to predict noncompliant toxicology tests.
METHODS: From July 1, 2017, to December 31, 2017, new patients completed the Edmonton Symptom Assessment Scale (ESAS), SOAPP-SF, and narcotic use agreement. Toxicology test results were collected at subsequent visits.
RESULTS: Of 223 distinct patients, 96% completed SOAPP-SF. Mean age was 61 ± 12.7 years, 58% were female, 68% were White, and 28% were Black. Eighty-three eligible patients (38%) completed toxicology testing. Younger age, male sex, and increased ESAS depression scores were associated with high-risk SOAPP-SF scores. Smoking habit was associated with an aberrant test. An SOAPP-SF score >= 3 predicted a noncompliant toxicology test.
CONCLUSION: Male sex, young age, and higher ESAS depression score were associated with a high SOAPP-SF score. Smoking habit was associated with an aberrant test. An SOAPP-SF of >= 3 (sensitivity, 0.74; specificity, 0.64), not >= 4, was predictive of an aberrant test; however, performance characteristics were decreased from those published by Inflexxion, for >= 4 (sensitivity, 0.86; specificity, 0.67). The specificity warrants caution in falsely labeling patients. The SOAPP-SF may aid in meeting National Comprehensive Cancer Network recommendations to screen oncology patients for opioid misuse.
Background and Aims: Palliative care is an important area of intervention in neurodegenerative diseases. The aim of this study is to understand the relationship between Palliative Care Needs and Caregiver Burden among persons diagnosed with neurodegenerative diseases.
Methods: A cross-sectional study design was adopted to explore the research problem. A prospective sample of 120 participants (60 Patient Caregiver dyads) of Motor Neurone Disease (MND) and Parkinson's disease (PD) were recruited for the study based on inclusion and exclusion criteria from a quaternary referral care centre for neurology in south India. Patients seeking care were recruited for the study consecutively. Palliative care outcome scale and Zarit Burden Interview scale were administered to understand the relationship.
Results: It was found that Palliative care outcomes score was positively correlated with caregiver burden (r = 0.597), showing that there is a bi-directional relationship between palliative care needs and caregiver burden.
Conclusion: Irrespective of the differences in illness characteristics, the study found that palliative care needs are high among chronic neurological conditions which requires a noncategorical psychosocial approach in ensuring care.
OBJECTIVES: The purpose of this report is to describe the effect of computed tomography-guided bilateral pudendal nerve cryoablations on pain and time to discharge in the setting of acute hospitalizations secondary to refractory pelvic pain from cancer.
METHODS: Investigators queried the medical record for patients who underwent pudendal nerve cryoablation using the Category III Current Procedural Technology code assignment 0442T or Category I code 64640 for cases prior to 2015. The resulting list was reviewed, and procedures performed on inpatients for intractable pelvic pain related to neoplasm were selected. The final cohort was then analyzed with regard to patient demographics, procedure details, technical success, safety, pain scores, and time to discharge.
RESULTS: Ten patients underwent cryoablation by 3 operators for palliation of painful pelvic neoplasms between June 2014 and January 2019. All probes were satisfactorily positioned and freeze cycles undertaken without difficulty. There were no procedure-related complications or adverse events. The mean difference in pre- and posttreatment worst pain scores was significant (n = 5.20, P = .003). The mean time to discharge following the procedure was 2.3 days.
CONCLUSION: Computed tomography-guided percutaneous cryoablation of the bilateral pudendal nerves may represent a viable option in the setting of acute hospitalization secondary to intractable pain in patients with pelvic neoplasms.
The unprecedented coronavirus disease 2019 (COVID-19) pandemic has challenged health care systems in different ways. In the United Kingdom, various subspecialties are deployed to the wards to help medical workforce in the frontlines, with dermatologists helping with general medical wards and on-calls. We present a case of COVID-19–related urticaria manifesting in a palliative setting and responding well to systemic antihistamine. This pandemic has highlighted a new subspecialty that should be explored and researched—palliative dermatology—bridging elements of dermatology with the concepts of palliative medicine. As dermatologists, we should be in the position to help with the last stages of a patient’s journey.
The coronavirus disease 2019 surge in New York City created an increased demand for palliative care (PC) services. In staff-limited settings such as safety net systems, and amid growing reports of health care worker illness, leveraging help from less-affected areas around the country may provide an untapped source of support. A national social media outreach effort recruited 413 telepalliative medicine volunteers (TPMVs). After expedited credentialing and onboarding of 67 TPMVs, a two-week pilot was initiated in partnership with five public health hospitals without any previous existing telehealth structure. The volunteers completed 109 PC consults in the pilot period. Survey feedback from TPMVs and on-site PC providers was largely positive, with areas of improvement identified around electronic health record navigation and continuity of care. This was a successful, proof of concept, and quality improvement initiative leveraging TPMVs from across the nation for a PC pandemic response in a safety net system.
Introduction: An acute shortage of senior mentors saw the Palliative Medicine Initiative (PMI) combine its novice mentoring program with electronic and peer mentoring to overcome insufficient mentoring support of medical students and junior doctors by senior clinicians. A three-phased evaluation was carried out to evaluate mentees’ experiences within the new CNEP mentoring program.
Methods: Phase 1 saw use of a Delphi process to create a content-valid questionnaire from data drawn from 9 systematic reviews of key aspects of novice mentoring. In Phase 2 Cognitive Interviews were used to evaluate the tool. The tool was then piloted amongst mentees in the CNEP program. Phase 3 compared mentee’s experiences in the CNEP program with those from the PMI’s novice mentoring program.
Results: Thematic analysis of open-ended responses revealed three themes–the CNEP mentoring process, its benefits and challenges that expound on the descriptive statistical analysis of specific close-ended and Likert scale responses of the survey. The results show mentee experiences in the PMI’s novice mentoring program and the CNEP program to be similar and that the addition of near peer and e-mentoring processes enhance communications and support of mentees.
Conclusion: CNEP mentoring is an evolved form of novice mentoring built on a consistent mentoring approach supported by an effective host organization. The host organization marshals assessment, support and oversight of the program and allows flexibility within the approach to meet the particular needs of mentees, mentors and senior mentors. Whilst near-peer mentors and e-mentoring can make up for the lack of senior mentor availability, their effectiveness hinges upon a common mentoring approach.
To better support the CNEP program deeper understanding of the mentoring dynamics, policing and mentor and mentee training processes are required. The CNEP mentoring tool too needs to be validated.
Background: The worldwide need for palliative care is high, especially in mid- income countries like Ecuador, where the percentage of patients receiving such care is very small due to the scarcity of infrastructure and specialized personnel and to the unequal distribution in the country. The objective of this study is to explore the knowledge, attitudes and expectations related to palliative care of the physicians in Ecuador.
Methods: A qualitative study based on 28 semi-structured interviews, from March 2014 to November 2016, with physicians working in four cities in Ecuador recruited through the snowball technique. Thematic analysis was developed supported by the ATLAS.ti software.
Results: Five core themes were identified: (1) training, (2) health policy, (3) professionals’ activities, (4) health services and (5) development of palliative care in Ecuador.
Conclusions: Strategies are needed which intensify the training of medical professional in palliative care, as well as avail the human resources and materials for providing it.
Background: French legislation about sedation in palliative medicine evolved in 2016 with the introduction of a right to deep and continuous sedation, maintained until death. The objective was to describe midazolam sedation at the COL (Centre Oscar Lambret [Oscar Lambret Center], French regional center for cancer control), in order to establish a current overview before the final legislative changes.
Methods: Descriptive, retrospective and single-center study, concerning major patients in palliative care hospitalized from 01/01/2014 to 12/31/2015, who had been sedated by midazolam. The proven sedations (explicitly named) and the probable sedations were distinguished.
Results: A total of 54 sedations were identified (48 proven, 6 probable). Refractory symptoms accounted for 48.1% of indications, complications with immediate risk of death 46.3%, existential suffering 5.6%. Titration was performed in 44.4% of cases. Sedation was continuous until death for 98.1% of the cases. Probable sedation had a higher failure rate than proven sedation. Significant differences existed for the palliative care unit compared to other units regarding information to the patient, their consent, anticipation, mention by correspondence and carrying out titrations. When patients had already been treated with midazolam, the induction doses, initial maintenance doses, and doses at the time of death were significantly higher. For those receiving opioids, the maintenance dose at the time of death was higher. No comparison found a difference in overall survival.
Conclusions: After a sufficient follow-up has enabled teams to familiarize with this new legislation, reflection on sedation should be conducted to adapt to final recommendations.
Background: Anticipatory prescribing (AP) of injectable medications in advance of clinical need is established practice in community end-of-life care. Changes to prescribing guidelines and practice have been reported during the COVID-19 pandemic.
Aims and objectives: To investigate UK and Ireland clinicians’ experiences concerning changes in AP during the COVID-19 pandemic and their recommendations for change.
Methods: Online survey of participants at previous AP national workshops, members of the Association for Palliative Medicine of Great Britain and Ireland and other professional organisations, with snowball sampling.
Results: Two hundred and sixty-one replies were received between 9 and 19 April 2020 from clinicians in community, hospice and hospital settings across all areas of the UK and Ireland. Changes to AP local guidance and practice were reported: route of administration (47%), drugs prescribed (38%), total quantities prescribed (35%), doses and ranges (29%). Concerns over shortages of nurses and doctors to administer subcutaneous injections led 37% to consider drug administration by family or social caregivers, often by buccal, sublingual and transdermal routes. Clinical contact and patient assessment were more often remote via telephone or video (63%). Recommendations for regulatory changes to permit drug repurposing and easier community access were made.
Conclusions: The challenges of the COVID-19 pandemic for UK community palliative care has stimulated rapid innovation in AP. The extent to which these are implemented and their clinical efficacy need further examination.
Physiatrists care for patients and families with complex medical needs, and primary palliative care is an important part of the comprehensive rehabilitation care plan. Palliative care improves patient and family quality of life and reduces healthcare costs. Clinical care guidelines for several physiatry patient populations now include the provision of palliative care.
Current Accreditation Council for Graduate Medical Education (ACGME) physiatry residency program requirements include foundational palliative care skills. Similarly, current clinical palliative care practice guidelines enumerate standards that apply to the rehabilitation setting. However, there is a dearth of literature on the current state of palliative care training within physiatry programs, and hospice and palliative medicine (HPM) remains one of the least subscribed physiatry subspecialties.
In this paper, we describe palliative care, highlight existing literature on palliative care needs within physiatry patient populations, and identify a core physiatry-palliative care skillset. We look both within physiatry and across other specialties to guide recommendations for palliative care education within physiatry residency programs. We also describe opportunities for post-residency fellowship training in HPM.
Background: Previous studies suggest that the symptomatology threshold (i.e. the level and types of symptoms) for a referral to specialized palliative care might differ for doctors in different parts of the healthcare system; however, it has not yet been investigated.
Aim: To investigate if the number and level of symptoms/problems differed for patients referred from the primary and secondary healthcare sectors (i.e. general practitioner versus hospital physician).
Setting/participants: Adult cancer patients registered in the Danish Palliative Care Database who reported their symptoms/problems at admittance to specialized palliative care between 2010 and 2017 were included. Ordinal logistic regression analyses were performed with each symptom/problem as outcome to study the association between referral sector and symptoms/problems, controlled for the effect of gender, age, cancer diagnosis and the specialized palliative care service referred to.
Results: The study included 31,139 patients. The average age was 69 years and 49% were women. Clinically neglectable associations were found between referral sector and pain, appetite loss, fatigue, number of symptoms/problems, number of severe symptoms/problems (odds ratios between 1.05 and 1.20, all p < 0.05) and physical functioning (odds ratio = 0.81 (inpatient care) and 1.32 (outpatient), both p < 0.05). The remaining six outcomes were not significantly associated with referral sector.
Conclusion: Differences across healthcare sectors in, for example, competences and patient population did not seem to result in different symptomatology thresholds for referring patients to palliative care since only small, and probably not clinically relevant, differences in symptomatology was found across referral sectors.
The COVID-19 pandemic has changed the way doctors approach palliative and end-of-life care, which has undoubtedly affected the mental health of patients, families, and health care professionals. Given these circumstances, doctors working on the front line are vulnerable to moral injury and compassion fatigue. This is a reflection of 2 junior doctors experiencing firsthand demands of caring for patients during the outbreak.
Background: the World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care.
Methods: The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses.
Results: This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-o-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care.
Conclusions: This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context.
Introduction: A significant proportion of patients with advanced primary or metastatic intrathoracic malignancy will eventually develop central airway obstruction. The morbidity associated with malignant airway obstruction (MAO) is considerable and the management is difficult. Our aim was to evaluate the outcomes of tracheobronchial stenting in patients with MAO and its role in palliative care.
Material and Methods: This retrospective study involved a consecutive case series of patients with advanced cancer with MAO who underwent tracheobronchial stenting between August 2014 and August 2019. The European Cooperative Oncology Group (ECOG) scale was used to evaluate patient functional status before and after tracheobronchial stenting. Univariate survival analysis included Kaplan-Meier curves with Log-Rank test, while Cox regression was used as a multivariate analysis.
Results: We included 28 patients with median age of 55.0 years (interquartile range = 49.3-66.5) and 89.3% male. The most frequent primary tumour was the esophagus followed by lungs. The majority of the patients (75%) expressed immediate symptom relief after stenting and there was a significant improvement in the mean ECOG performance status (PS; P = .005). There was no intraprocedure mortality and complications were observed in 6 patients. The median survival after airway stenting was 39.0 days (95% CI = 32.2-45.8) with poorer PS after stent insertion associated with lower overall survival (hazard ratio = 2.3 [95% CI = 1.1-4.9], P = .030) on multivariate analysis.
Conclusion: Airway stent is a safe and effective procedure that offers rapid palliation of symptoms with no major complications. Therefore, stent placement should be considered as part of the treatment of patients with terminal cancer.
Background: Although outpatient palliative care clinics (OPCCs) provide a venue for early, pre-emptive referral to palliative care on a routine basis, some patients will continue to require urgent referrals. The purpose of this study was to characterise these urgent referrals to determine whether they reflect clinical need or convenience.
Methods: We retrospectively compared new patients in an OPCC who were seen urgently versus those seen at routine appointments. Descriptive statistics compared the two groups in terms of clinical characteristics, referring teams, symptoms, performance status and outcomes. Logistic regression was used to identify factors associated with urgent referral to the OPCC. Overall survival was compared using the log-rank test.
Results: Between January 2016 and December 2017, a total of 113 urgent referrals were reviewed in the OPCC; these were compared with a random sample of 217 routine referrals. Patients seen urgently were more likely to be referred by surgical oncology, and to report worse symptom scores for pain (p=0.0007), tiredness (p=0.02), well-being (p=0.001), constipation (p=0.02) and sleep (p=0.01). More patients seen urgently required direct admission to hospital following the visit (17.7% vs 0.9%, p<0.001). Median survival was shorter for patients seen urgently (4.3 months, 95% CI 3.4 to 7.8) versus routinely (8.1 months, 95% CI 7.2 to 9.5).
Conclusions: Compared with routine referrals, new patients seen urgently in the OPCC had higher symptom burden, shorter median survival and a greater chance of direct admission to hospital. Palliative care clinics should consider how best to accommodate urgent referrals.
Objective: To understand the perception of adolescents with cancer undergoing palliative cares about their illness process.
Method: An exploratory and qualitative study, per formed at a federal public hospital specialized in oncology disease in Rio de Janeiro, through interviews with nine adolescents aged 12 to 20 years old, from July to August 2017. Data was submitted to thematic analysis and the theoretical framework was Hildegard Peplau's Theory of Interpersonal Relationships.
Results: Three categories emerged: Living the difficult moment of the trajectory of the disease; Feeling the social isolation and that life has stopped; and Overcoming the difficult stage of the disease. They addressed the trajectory of the disease since the diagnosis, with the awakening of feelings of isolation and stagnation of life. Moreover, they highlighted the overcoming power of these adolescents.
Final considerations: The study made it possible to know the difficulties experienced during the course of the disease, providing subsidies for the practice of nurses to happen in a sensitive, individualized manner and focused on the individual's need thus enhancing comfort and quality of life.
Context: Palliative care consultation before left ventricular assist device (LVAD) surgery (PreVAD) has been recommended, but its impact on goal-concordant care is unknown.
Objectives: To describe the association between patients' unique unacceptable condition articulated during PreVAD with the actual care provided at the end of life.
Methods: Among 308 patients who had PreVAD between 2014 and 2019, 72 patients died before December 31, 2019. Based on the answers to the question, “Is there any condition you would find unacceptable?” patients were divided into ARTICULATE (those who could articulate their unacceptable condition clearly, n = 58) and non-ARTICULATE (those who could not, n = 14). Circumstances at death and end-of-life care were compared between groups.
Results: Mean age at death was 63.2 years (SD ±13.1), 56 patients (77.8%) were males, and median duration of LVAD was 167.5 days (interquartile range 682). ARTICULATE patients died less frequently in the intensive care unit than non-ARTICULATE patients (33 patients, 57.9% vs. 13 patients, 92.9%; P = 0.014) and had ethics consultation less frequently (four patients, 6.9% vs. five patients, 35.7%; P = 0.011). Frequency of LVAD withdrawal was similar in both groups. Among ARTICULATE cohort, the unacceptable condition articulated in PreVAD did not seem to influence decisions at the end of life.
Conclusion: Patients who articulated their unacceptable condition clearly before LVAD surgery had less frequent ethics consultations and received less intensive care at the end of life, but it did not seem to affect the decision of LVAD withdrawal. It may be more important to engage in discussions around their unacceptable conditions, rather than the specific condition articulated. The question of an unacceptable condition should be part of any routine palliative care consultation before LVAD surgery.