Objective: The aim of this study was to characterize nutritional status, body composition, oxidative stress, and inflammatory activity and to determine the possible associations between nutritional status and clinical variables in advanced cancer patients.
Method: This was a cross-sectional study of 46 elderly cancer patients under palliative care with a prognosis of 30 days or more. Nutritional status, food intake, anthropometry, body composition (deuterium oxide method), metabolic profile, inflammation damage (C-reactive protein), oxidative damage (8-hydroxy-2’-deoxyguanosine), and symptom intensity were evaluated.
Results: Among elderly cancer patients, 36.9% were malnourished or at risk of malnutrition. Systemic inflammation was detected, with a correlation between worse nutritional status and higher C-reactive protein levels (p < 0.01, r= -0.57), while lower lean mass (p < 0.01, r = 0.62) and higher fat mass percentages (p < 0.01, r = 0.62) correlated with higher levels of 8-hydroxy-2’-deoxyguanosine. Furthermore, daily energy (n = 25; 57.4%) and protein intake (n = 24; 52.2%) were lower than recommended in more than half the patients. The most prevalent symptoms were anxiety, impairment of well-being, drowsiness, tiredness, and lack of appetite.
Conclusions: Despite preserved functionality, patients already had clinical and laboratory changes that, together with inadequate food intake, risk of malnutrition, systemic inflammation, and the presence of uncontrolled symptoms, alerted to the importance of an early and comprehensive palliative approach.
Background/objectives: Opioids relieve symptoms in terminal care. We studied opioid underuse in long-term care facilities, defined as residents without opioid prescription despite pain and/or dyspnoea, 3 days prior to death.
Design and setting: In a proportionally stratified randomly selected sample of long-term care facilities in six European Union countries, nurses and long-term care facility management completed structured after-death questionnaires within 3 months of residents’ death.
Measurements: Nurses assessed pain/dyspnoea with Comfort Assessment in Dying with Dementia scale and checked opioid prescription by chart review. We estimated opioid underuse per country and per symptom and calculated associations of opioid underuse by multilevel, multivariable analysis.
Results: nurses’ response rate was 81.6%, 95.7% for managers. Of 901 deceased residents with pain/dyspnoea reported in the last week, 10.6% had dyspnoea, 34.4% had pain and 55.0% had both symptoms. Opioid underuse per country was 19.2% (95% confidence interval: 12.9–27.2) in the Netherlands, 25.2% (18.3–33.6) in Belgium, 29.3% (16.9–45.8) in England, 33.7% (26.2–42.2) in Finland, 64.6% (52.0–75.4) in Italy and 79.1% (71.2–85.3) in Poland (p < 0.001). Opioid underuse was 57.2% (33.0–78.4) for dyspnoea, 41.2% (95% confidence interval: 21.9–63.8) for pain and 37.4% (19.4–59.6) for both symptoms (p = 0.013). Odds of opioid underuse were lower (odds ratio: 0.33; 95% confidence interval: 0.20–0.54) when pain was assessed.
Conclusion: Opioid underuse differs between countries. Pain and dyspnoea should be formally assessed at the end-of-life and taken into account in physicians orders.
Dementia management is complicated by neuropsychiatric symptoms such that the longitudinal care of a psychiatrist or other mental health provider is often an essential part of patient care and a major source of family support. Given the importance of end-of-life continuity of care, the involvement of psychiatry in palliative and hospice services affords an important opportunity for growth. Common challenges involve sharing prognostic information with patients and families to aid in advance planning, and management of persistent pain and nutritional issues. Future research will yield important new insights and guidelines for care.
Aim: To pilot test a home end-of-life and palliative care intervention for family caregivers and patients with rare advanced lung diseases and estimate effect-size for the power analysis in a future clinical trial.
Design: This study uses a parallel randomized control trial. Families are randomly assigned to the intervention group or the control group in a 1:1 fashion.
Methods: The study population includes patients with rare advanced lung diseases and their family caregivers who are involved in patients’ home care. The control group receives standard care through their hospital or outpatient clinics. The intervention group receives standard care plus 2-weekly home end-of-life and palliative care coaching by experienced community nurses. Primary outcome is breathlessness measured by shortness of breath scale. Secondary outcomes are: (1) caregivers’ anxiety and depression measures; (2) the presence of patient’s signed advance directives in the medical record or not; and (3) Helpfulness of intervention measured by self-report Helpfulness scale. The study was funded in October 2018 and received ethical Institutional Review Board approval in February 2019.
Discussion: West Virginia has one of the highest incidence rates of lung disease deaths in the nation. However, there is inadequate home end-of-life and palliative care for this underserved population. This is an initial interventional study of nurse-led coaching home-based palliative care for rare advanced lung diseases in rural Appalachia. Developing research collaboration with clinicians is essential for enrollment. Enrollment was successful due to regular meetings with pulmonologists who screened patients per the study inclusion criteria in their specialty clinic and made direct referrals to the research assistants. Results of this study will be used in the future trial.
Impact: The findings will contribute to the evidence-based home nursing care, planning for family/patient preferences and supportive end-of-life palliative care for managing advanced lung diseases at home.
Background: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization.
This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families.
Methods: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis.
Results: Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients’ openness to their own needs).
Conclusions: To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals’ communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged.
As coronavirus disease 2019 cases increase throughout the country and health care systems grapple with the need to decrease provider exposure and minimize personal protective equipment use while maintaining high-quality patient care, our specialty is called on to consider new methods of delivering inpatient palliative care (PC). Telepalliative medicine has been used to great effect in outpatient and home-based PC but has had fewer applications in the inpatient setting. As we plan for decreased provider availability because of quarantine and redeployment and seek to reach increasingly isolated hospitalized patients in the face of coronavirus disease 2019, the need for telepalliative medicine in the inpatient setting is now clear. We describe our rapid and ongoing implementation of telepalliative medicine consultation for our inpatient PC teams and discuss lessons learned and recommendations for programs considering similar care models.
The current health crisis caused by COVID-19 is a challenge for oncology treatment, especially when it comes to radiotherapy. Cancer patients are already known to be very fragile and COVID-19 brings about the risk of severe respiratory complications. In order to treat patients safely while protecting medical teams, the entire health care system must optimize the way it approaches prevention and treatment at a time when social distancing is key to stemming this pandemic. All indications and treatment modalities must be re-discussed. This is particularly the case for radiotherapy of bone metastases for which it is possible to reduce the number of sessions, the frequency of transport and the complexity of treatments. These changes will have to be discussed according to the organization of each radiotherapy department and the health situation, while medical teams must remain vigilant about the risks of complications of bone metastases, particularly spinal metastases. In this short piece, the members of the GEMO (the European Study Group of Bone Metastases) offer a number of recommendations to achieve the above objectives, both in general and in relation to five of the most common situations on radiation therapy for bone metastases.
PURPOSE: Opportunities for advance care planning (ACP) discussions continue to be missed despite the demonstrated benefit of such conversations. This is in part because of a poor understanding of patient preferences. We aimed to determine oncology patients’ preferences surrounding ACP with a focus on the choice of which health care providers to have the conversation with and the timing of conversations.
METHODS: cross-sectional 19-question survey of surgical and medical oncology patients in a tertiary care hospital was conducted that assessed knowledge, experience, and preferences surrounding ACP. Quantitative variables were reported with descriptive statistics, and a coding structure was developed to analyze qualitative data.
RESULTS: Two hundred patients were surveyed. Only 24% of patients reported previously having ACP discussions with their physicians despite 82.5% reporting a wish to do so. Patients felt that these discussions were a priority for them (to alleviate familial guilt, maintain control, and prevent others’ values from guiding end-of-life care), but they reported that previous experiences with ACP had been neither comprehensive nor effective. Most patients (43.5%) preferred to have ACP discussions with their primary care providers (PCPs) compared with 7% preferring their surgeon and 5.5% preferring their oncologist. Trust and familiarity with PCPs arose as the dominant theme underlying this selection. Most patients (94%) preferred to have ACP discussions early, with 45% wishing such a discussion had been initiated before their cancer diagnosis.
CONCLUSION: Patients with cancer prefer to have ACP discussions with their PCPs and prefer to do so early in their disease course.
Rationale: The care of critically ill patients often involves complex discussions surrounding prognosis, goals, and end-of-life decision making. Yet, physician and hospital practice patterns, rather than patient goals, remain a major determinant of the intensity of end-of-life care. For critically ill patients, palliative care may help promote treatments that are concordant with patients’ goals, while minimizing the use of invasive and costly intensive care unit resources that may not be consistent with those goals.
Objectives: To determine whether inpatient palliative care, delivered by specialist consultants or a primary medical team, is associated with reduced hospital length-of-stay and costs for older adults with septic shock at the end of life.
Methods: Retrospective cohort using the National Inpatient Sample (NIS) 2013-2014, examining patients aged = 65 years with septic shock who died during their hospitalization. The exposure of interest was inpatient palliative care encounter, including either generalist or specialist-delivered palliative care. Outcomes were hospital length-of-stay, total cost for the hospitalization, and daily hospital cost. Patient and hospital-level confounders were used to derive inverse probability of treatment weights and estimate the association between palliative care and outcomes in a generalized linear model.
Results: We studied 45,868 patients who died with a diagnosis of septic shock; 15,370 of these patients had a palliative care encounter. After inverse probability of treatment weighting, there were no appreciable differences between the population characteristics. Palliative care was associated with a shorter adjusted mean hospital length-of-stay (12.0 vs 13.1 days, difference -1.1 days, 95% CI -1.4 to -0.9; P <0.001), lower total hospital costs (69,700 vs 76,800 USD, difference -7,100 USD, 95% CI -8.5 to -5.2 thousand USD; P <0.001) and lower daily hospital cost (5,900 vs 6,200 USD, difference -310 USD per day, 95% CI -420 to -200 USD; P<0.001) when compared to no palliative care.
Conclusions: In a nationally representative sample of adults who died during a hospitalization with septic shock, receipt of palliative care was associated with shorter length-of-stay and lower total and daily hospital costs. This finding was robust to adjustment for patient and hospital-level confounders, though unmeasured confounders still could be impacting these findings.
Previous literature demonstrates that current palliative care training is in need of improvement for medical students in global, European and Canadian contexts. The training of medical undergraduates is key to ensure that the ongoing and increasing need for enhanced access to palliative care across all settings and communities is met. We describe building a comprehensive palliative and end-of-life care curriculum for medical undergraduates at our university. As with recent European and US studies, we found that the process of university curriculum renewal provided a critical opportunity to integrate palliative care content, but needed a local palliative care champion already in place as an energetic and tireless advocate. The development and integration of a substantive bilingual (English and French) palliative and end-of-life care curriculum over the 4-year medical undergraduate program at our university has occurred over the course of 14 years, and required multiple steps and initiatives. Subsequent to the development of the curriculum, there has been a 13-fold increase in students selecting our palliative care clinical rotations. Critical lessons learned speak to the importance of having a team vision, interprofessional collaboration with a focus on vision, plans and implementation, and flexibility to actively respond and further integrate new educational opportunities within the curriculum. Future directions for our palliative care curriculum include shifting to a competency-based training and evaluation paradigm. Our findings and lessons learned may help others who are working to develop a comprehensive undergraduate medical education curriculum.
Purpose: Do-not-resuscitate (DNR) decision-making in severely ill patients presents many difficult medical, ethical, and legal challenges. The primary aim of this study was to explore cancer patients’ and health care professionals’ attitudes regarding DNR decision-making authority and timing of the decision.
Methods: This study was a questionnaire survey among Danish cancer patients and their attending physicians and nurses in an oncology outpatient setting. Potential differences between patients’, physicians’, and nurses’ answers to the questionnaire were analyzed using Fisher’s exact test.
Results: Responses from 904 patients, 59 physicians, and 160 nurses were analyzed. The majority in all three groups agreed that DNR decisions should be made in collaboration between physician and patient. However, one-third of the patients answered that the patient alone should make the decision regarding DNR, which contrasts with the physicians’ and nurses’ attitudes, 0% and 6% pointing to the patient as sole decision-maker, respectively. In case of disagreement between patient and physician, a majority of both patients (66%) and physicians (86%) suggested themselves as the ultimate decision-maker. Additionally, 43% of patients but only 19% of physicians preferred the DNR discussion being brought up early in the course of the disease.
Conclusions: With regard to the decisional role of patient vs. physician and the timing of the DNR discussion, we found a substantial discrepancy between the attitudes of cancer patients and physicians. This discrepancy calls for a greater awareness and discussion of this sensitive topic among both health care professionals and the public.
The Chicago Consensus Working Group provides multidisciplinary recommendations for palliative care specifically related to peritoneal surface malignancies. These guidelines are developed with input from leading experts including surgical oncologists, medical oncologists, gynecologic oncologists, pathologists, radiologists, palliative care physicians, and pharmacists. These guidelines recognize and address the emerging need for increased awareness in the appropriate management of peritoneal surface disease. They are not intended to replace the quest for higher levels of evidence.
Background: Knowing the opinions of patients with Progressive Neurological Diseases (PNDs) and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this paper is to describe the creation and psychometric properties of the newly developed APND-EoLC questionnaire (the Attitudes of Patients with Progressive Neurological Disease to End of Life Care questionnaire).
Methods: Following focus group discussion, four main areas of interest were identified: patients’ and family members’ attitudes towards end-of-life care, factors influencing decisions about treatment to prolong patients’ life, concerns and fears regarding dying, and opinions on the system of care. The created questions were divided into domains based on factor analysis and psychometric properties were evaluated by sample of 209 patients with PND and 118 their family members.
Results: The final version of the scale contains a total of 28 questions divided into six domains (end-of-life control, keeping patients alive, trust in doctors/treatment, trust in social support, sense of suffering, and dependence/loss of control) and five individual questions determining views of the care system with specified response options. Construct validity was verified by confirmatory factor analysis for each evaluated area individually. Appropriate psychometric properties were identified in the questionnaire.
Conclusions: The APND-EoLC questionnaire can be recommended for use in both research and clinical practice.
Purpose: The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time.
Methods: A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14 days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC.
Results: The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7 days and 14 days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14 days after PCCS (ß = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (ß = 1.14, p = 0.013).
Conclusions: This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.
Purpose: Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer.
Methods: Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed.
Results: Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p < 0.0001), an advance directive completed (63.3% vs. 13.3%, p < 0.0001), and non-full code status (43.3% vs. 16.7%, p < 0.03). All patients and family caregivers would recommend the program to others with cancer.
Conclusions: We describe the impact of an embedded palliative care program for patients with metastatic colorectal cancer, which improved prognostic awareness and rates of advance care planning.
Objective: Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.
Method: The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.
Results: One emotional barrier, “negative emotional reactions” (13 items, Cronbach's a = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's a = 0.85), “belief in avoidance” (5 items, Cronbach's a = 0.86), and “outcome expectancy” (4 items, Cronbach's a = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.
Significance of results: Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.
As the COVID-19 pandemic continues to spread across the country, I am proud to be a part of a community of physicians selflessly stepping up to the call to help. Palliative medicine has taken on a vital role in this crisis, in leading discussions on goals of care and taking over the care of those who are dying of this disease. As a palliative medicine fellow, I feel a palpable energy among my colleagues and mentors as we rise up to this challenge. We lead ethics committees on codes and triage committees for ventilator allocation if we were to face a shortage—a situation that would have been inconceivable just a few weeks ago. Now more than ever, there is a common sense of purpose among health care providers: we are all in this fight together. Yet behind this common purpose, many of us have a common fear. Not only do we fear for our own health, but we also fear for the health of our families that we come home to at night.
Background: Until recently, consumers have had limited resources to assess quality of hospices agencies, contributing to growing numbers of consumers turning to online review sites, such as Yelp. However, little is known about the content of hospice Yelp reviews and how these relate to recently available Center for Medicare and Medicaid Services' Hospice Compare (HC) site data.
Objective: To better understand what consumers report on Yelp about hospice care and explore how these areas relate to HC data.
Design: We examined 692 consumer Yelp reviews of 67 hospices in California and compared identified themes with quality measures presented on the HC site.
Setting/Subjects: We used a purposive sample of California Hospice's with Yelp reviews.
Measurements: Qualitative consumer comments about their experience with hospice care were analyzed by using a grounded theory approach.
Results: We found that overall Yelp comments were positive, however Yelp themes were more extensive and diverse than those on HC.
Conclusion: We recommend that consumers consider both HC and online review sites such as Yelp when evaluating a hospice.
Objective: to explore self-perception competence among Spanish nurses dealing with patient death and its relationship with work environment, evidence-based practice, and occupational stress.
Method: a cross-sectional web-based survey collected information from a convenience sample of 534 nurses from professional Spanish Colleges who answered four validated questionnaires: Coping with Death Scale, Practice Environment Scale of the Nursing Work Index, Perception of Evidence-Based Practice (EBP) and Nursing Stress Scale.
Results: a total of 79% of the participants were women, the average age was 40 years old, 38% had a postgraduate degree and 77% worked in public health settings. Many nurses evaluated their work environment as unfavorable (66%), reported high occupational stress (83.5±14.9), and had high scores on knowledge/skills in EBP (47.9±11.3). However, 61.2% of them perceived an optimal coping (>157 score). The multivariate logistic model indicated positive associations with work environment and EBP characteristics (OR: 1.30, p=0.054; OR: 1.04, p=0.007; OR: 1.13, p<0.001, respectively) but negative associations with occupational stress and short work experience (OR: 0.98, p=0.0043; OR: 0.74, p<0.002, respectively). These factors explained 23.1% of the coping variance (p<0.001).
Conclusion: although most nurses perceived optimal coping, the situation could be enhanced by modifying several contextual factors. The identification of these factors would improve the quality of end-of-life care by facilitating nursing management.