The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
BACKGROUND AND OBJECTIVES: Meaning in life (MIL) represent a key topic in palliative care. The aims of this study were to explore (1) the differences in perceived MIL and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (2) to what extent MIL can be considered as a significant predictor of quality of life (QOL).
METHODS: A cross-sectional study was conducted separately for the patients (face-to-face interviews) and the general population (telephone survey). MIL was measured with the Schedule for Meaning in Life Evaluation (SMILE) and QOL with a single-item visual analogue scale (0-10). Sociodemographic variables were controlled for in the analyses.
RESULTS: 206 patients and 1015 participants from the Swiss population completed the protocol. Results indicated high MIL scores in both populations even if the difference was significant (patients 81.9 vs general population 87, p<0.001). Patients were more likely to cite 'family' (OR=1.78), 'social relations' (OR=1.9), 'spirituality and religion' (OR=3.93), 'social commitment' (OR=1.94) and 'growth' (OR=2.07), and less likely to cite 'finances' (OR=0.15) and 'health' (OR=0.21) as MIL-relevant areas. The SMILE scores and MIL areas explained 21.8% of the QOL variance for the patients and 15.1% for the representative sample.
CONCLUSIONS: Our data emphasise the importance of MIL as a contributor to QOL in both populations. It highlights the importance of the life areas contributing to MIL, especially social interactions for both populations, and spirituality and areas related to growth in palliative care patients.
PURPOSE: This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement.
METHODS: FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6-9 months after SIPC (N = 160).
RESULTS: At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use.
CONCLUSIONS: The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future.
Hepatocellular carcinoma is a common cancer with a poor prognosis, associated with high economic costs and a significant burden of disease. While it is often asymptomatic in the early stages, patients may experience great discomfort from advanced disease, treatment adverse effects or decompensation of underlying cirrhosis. Palliative care has the potential to markedly improve quality of life, physical and psychological symptoms in patients with end-stage liver disease, and has been shown to prolong survival in some non-hepatocellular carcinoma malignancies. However, this service is underutilized in hepatocellular carcinoma and referrals are frequently late due to factors such as stigmatization, inadequate resources, lack of education for non-palliative care physicians and inadequate modelling for integration of palliative and supportive care within liver disease services. In the future, education workshops, population-based awareness campaigns, increased funding and improved models of care, may improve the uptake of palliative care and subsequently optimize patient care, particularly towards the end of life.
L’offre de soins à domicile a beaucoup évolué ces vingt dernières années pour répondre aux besoins de la population et pour s’adapter aux contraintes du système de santé. Après les réseaux de santé, les maisons des réseaux, puis les plateformes territoriales d’appui, de nouveaux dispositifs d’aide à la coordination permettent aux soignants du domicile d’organiser la prise en charge des personnes en situation de santé complexe. Illustration avec un réseau de soins palliatifs en Normandie.
Background: Ohana Health Plan, Inc., (OHP) is one of the first managed care organizations offering supportive care services targeted to superutilizers. Bristol Hospice Hawaii, LLC, partnered with OHP to provide interdisciplinary supportive care services to home-bound OHP members.
Objectives: The purpose of this study was to measure symptom relief, satisfaction, resource utilization, and cost savings associated with supportive care.
Design: Prospective study.
Setting: Over 12 months, 27 superutilizer members residing in the community were referred by OHP, 21 members were enrolled into supportive care.
Measurements: Data were collected upon admission and repeatedly thereafter using the Edmonton Symptom Assessment Scale (ESAS) and the Missoula–Vitas Quality of Life Index (MVQOLI). The Family Satisfaction with Advanced Cancer Care (FAMCARE) Scale was administered at discharge. Emergency department (ED) visits and hospital utilization were tracked.
Results: Median age was 63 years; more than half had cardiac diagnoses. Majority of members were Hawaiian and other Pacific Islander. Median length of stay in supportive care was 90 days. Five (23%) members enrolled in hospice following supportive care. Symptom improvement occurred in pain (p < 0.0001), anxiety (p = 0.0052), and shortness of breath (p = 0.0447). This model has shown a 79.5% reduction of ED visits per thousand members and a 75% reduction of hospitalizations per thousand. Overall net savings was 36%. Discussions and documentation of end-of-life wishes increased from 23% to 85%.
Conclusion: Supportive care is highly effective in reducing costs associated with superutilizers. Our experience demonstrates the effectiveness of supportive care approaches in this population through improved care and lower health care costs overall.
Background: Many patients with advanced cancer diagnosed following emergency presentation will likely benefit from palliative care (PC) interventions. This study assessed the potential patient-related barriers to
inpatient PC consultation among patients who were newly diagnosed with cancer after emergency admission (EA) and received only supportive care.
Methods: This observational study retrospectively obtained data on all patients who were admitted to our hospital after emergency transfer between January 2012 and November 2016. We identified patients for
whom cancer was listed as the primary disease in the post-hospitalization discharge summary. Out of these patients, we selected those with newly diagnosed cancer and determined whether they were referred for
inpatient PC consultation.
Results: This study recruited 141 patients with newly diagnosed cancer after EA (1.2% of all emergency transfer cases). Following diagnosis, the PC team intervened in 29.8% of all the patients enrolled in this
study and in 53.3% of patients who received only supportive care. In patients who received only supportive care, the patients who were not referred for PC consultation were significantly more likely to have shorter
survival time and less likely to receive disclosure about their cancer diagnosis than patients who were referred.
Conclusions: According to this study, short survival time and no disclosure of cancer diagnosis are potential patient-related barriers to inpatient PC consultation among patients with newly diagnosed cancer after EA.
Context: Cancer is a life-changing diagnosis accompanied by significant emotional distress, especially for children with advanced disease. However, the content and processes of discussing emotion in advanced pediatric cancer remain unknown.
Objectives: To describe the initiation, response, and content of emotional communication in advanced pediatric cancer.
Methods: We audiorecorded 35 outpatient consultations between oncologists and families of children whose cancer recently progressed. We coded conversations based on Verona Coding Definitions of Emotional Sequences.
Results: About 91% of conversations contained emotional cues, and 40% contained explicit emotional concerns. Parents and clinicians equally initiated cues (parents: 48%, 183 of 385; clinicians: 49%) and concerns (parents: 51%; clinicians: 49%). Children initiated 3% of cues and no explicit concerns. Emotional content was most commonly related to physical aspects of cancer and/or treatment (28% of cues and/or concerns, present in 80% of conversations) and prognosis (27% of cues and/or concerns, present in 60% of conversations). Clinicians mostly responded to emotional cues and concerns implicitly, without specifically naming the emotion (85%). Back channeling (using minimal prompts or words that encourage further disclosure, e.g., uh-huh) was the most common implicit response that provided space for emotional disclosure (32% of all responses). Information advice was the most common implicit response that reduced space for further emotional disclosure (28%).
Conclusion: Emotional communication in advanced pediatric cancer appears to be a subtle process where parents offer hints and clinicians respond with non-emotion-laden statements. Also, children were seldom engaged in emotional conversations. Clinicians should aim to create an environment that allows families to express emotional distress if and/or when ready.
OBJECTIVE: Patients with head and neck cancer (HNC) face a unique set of unmet needs. A subset of these patients experience symptom control challenges related to their disease burden and treatments. A multidisciplinary approach involving palliative medicine is underutilized but crucial to identify and address these concerns. There is limited information on palliative integration with head and neck oncology.
STUDY DESIGN: Case series with planned data collection.
SETTING: Academic quaternary care center.
SUBJECTS AND METHODS: We provide descriptive analyses of patients with HNC, including psychodiagnostic assessment and validated quality-of-life screening, from patients' first encounter at outpatient palliative medicine.
RESULTS: HNC (N = 80) contributed the greatest number of palliative referrals (25%) between 2010 and 2012. This cohort was 74% male and 79% Caucasian with a mean age of 53 years (95% CI, 51.1-54.9) and with stage IV disease of the oral cavity (28%) or oropharynx (31%). Sixty-three percent of patients had no evidence of disease. Seventy-five percent had a psychological history based on DSM-IV criteria (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition), and 70% had a history of substance use disorder. The most distressing quality-of-life concerns were pain, housing and financial problems, and xerostomia.
CONCLUSIONS: Patients with HNC who were referred to palliative medicine are burdened by multiple physical, psychological, substance use, and social challenges. We recommend comprehensive cancer-specific screening, such as the James Supportive Care Screening, to triage patients to appropriate supportive care services. Palliative care is one of many services that these patients may need, and it should be utilized at any point of the disease trajectory rather than reserved for end-of-life care.
Background: Supportive and palliative care worldwide is recognized as one of the six main cancer control bases and plays an important role in managing the complications of cancer. Limited studies have been published in the field of this policy analysis in the world.
Aim: This study aimed to analysis the policy-making process of supportive and palliative cancer care in three countries.
Methodology: This qualitative study is a part of a comparative study. The data were collected through reviewing scientific and administrative documents, the World Health Organization website and reports, government websites, and other authoritative websites. Searches were done through texts in English and valid databases, in the period between 2000 and 2018. To investigate the policy process, heuristic stages model is implemented consisting of the four stages: agenda setting, policy formulation, policy implementation, and policy evaluation.
Results: The findings of the study were categorized based on the conceptual model used in four areas related to the policy process, including agenda setting, policy formulation, policy implementation, and evaluation of cancer palliative care policies.
Conclusion: Several factors are involved in how cancer palliative care policy is included in policy-makers' agenda, understanding a necessity, raising public awareness, and acceptance as a result of sensing the physical and nonphysical care outcomes. The stages of development, implementation, and evaluation of palliative care in countries regardless of existing differences are a function of the health system and context of each country.
A key component of treatment for all people with advanced kidney disease is supportive care, which aims to improve quality of life and can be provided alongside therapies intended to prolong life, such as dialysis. This article addresses the key considerations of supportive care as part of integrated end-stage kidney disease care, with particular attention paid to programs in low- and middle-income countries. Supportive care should be an integrated component of care for patients with advanced chronic kidney disease, patients receiving kidney replacement therapy (KRT), and patients receiving non-KRT conservative care. Five themes are identified: improving information on prognosis and support, developing context-specific evidence, establishing appropriate metrics for monitoring care, clearly communicating the role of supportive care, and integrating supportive care into existing health care infrastructures. This report explores some general aspects of these 5 domains, before exploring their consequences in 4 health care situations/settings: in people approaching end-stage kidney disease in high-income countries and in low- and middle-income countries, and in people discontinuing KRT in high-income countries and in low- and middle-income countries.
OPINION STATEMENT: National supportive care guidelines for patients with cancer include recognition of patients' spirituality and spiritual needs. Experts differ on how best to address this dimension to our patients' lives. Some suggest that patients' medical team should take on spiritual care, and others suggest referral to chaplains or collaboration with outside clergy. In our view, the patient's medical team ought to best acknowledge patient spirituality when so desired by the patient, but intervention in the case of serious spiritual crisis ought to be the responsibility of those with specific training in this realm. For some patients, "concordance" between the specific spiritual tradition of the patient and chaplain is necessary where for others, non-denominational, secular, or inter-faith chaplaincy services are welcome. The central role for physicians and nurses in this area, is listening, awareness, respect, and where necessary, referral.
OBJECTIVE: The use of chemotherapy near the end of life is not advisable. There are scarce data in Europe but shows signs of aggressiveness. We designed this study to analyze the proportion of onco-hematological patients receiving chemotherapy within their last 2 weeks of life as well as starting a new chemotherapy regimen in the 30 days prior to death.
METHODS: A retrospective observational study was conducted in a tertiary hospital. Adults who died of an onco-hematological neoplasia while hospitalized between April 2017 and March 2018 were included. We assessed the use of chemotherapy over the course of the last 14 days of life, defined as the administration of at least one dose of chemotherapy. We also examined the proportion of patients starting a new chemotherapy regimen in the last 30 days of life.
RESULTS: A total of 298 inpatients died in the Hematology and Oncology units. During the last 14 days, 28.2% (n = 11) of hematological and 26.3% (n = 68) of oncological patients received chemotherapy; the overall rate was 26.5% (n = 79). Furthermore, the proportion of patients starting a new chemotherapy regimen in the last 30 days of life was high (20.5% and 20.8%, respectively). Female gender (odds ratio [OR] = 1.99, 95% confidence interval [CI] = 1.18-3.35) and age <45 (OR = 2.68, 95% CI = 1.05-6.88) were associated with higher rates of chemotherapy.
CONCLUSION: The proportion of patients receiving chemotherapy in the last 14 days of life was high, as well as the proportion of patients starting a new regimen in their last 30 days. This was indicative of excessive aggressiveness at the end-of-life care.
BACKGROUND: While women in the Deep South area of the United States have higher rates of maternal and infant mortality, palliative and supportive care programs are lacking. Additionally, few studies have detailed referral triggers that are specific to the mother, infant, or pregnancy for inclusion in perinatal and neonatal palliative and supportive care programs.
PURPOSE: The purpose of this retrospective, descriptive study was to examine the sociodemographic factors and referral triggers for perinatal-neonatal palliative and supportive care services for women enrolled in a newly developed perinatal-neonatal palliative and supportive care program.
METHODS: Data were collected from medical records of 135 women enrolled in the program. Triggers for referral to the program were classified as fetal, maternal, or prenatal complications.
RESULTS: A diverse sample of women were enrolled in the program. Most infants survived to birth and discharge from the hospital. Two-thirds of referrals were related to infant complications and 34% were for multiple complications (fetal, maternal, and/or prenatal). Triggers for referral to the program were not related to sociodemographic characteristics of women.
IMPLICATIONS FOR PRACTICE: A comprehensive list of triggers that include maternal and prenatal complications, in addition to infant complications, may ensure at-risk women and infants, are enrolled in perinatal-neonatal palliative and supportive care programs early in pregnancy, regardless of sociodemographic factors.
IMPLICATIONS FOR RESEARCH: Prospective research on the effectiveness of perinatal-neonatal palliative and supportive care programs in diverse populations of women is needed. This includes the examination of family health outcomes and provider perspectives.
Advanced cancer patients with cachexia and their families can suffer from eating-related distress. This complex entity encompasses patients’ struggle to nourish themselves, emotional and social consequences of their inability to maintain food intake, and profound disturbance in family relationships. With evidence-based nutritional care, as well as symptom management to enable food intake, cachexia can be mitigated to some degree. In addition, patients and families require psychosocial support and education to understand and cope with this condition. Only by taking an integrated approach can health care teams alleviate eating-related distress, improve quality of life (QOL), reduce interpersonal conflicts, and alter perceptions of nutritional neglect for patients and families. However, few studies have investigated eating-related distress among patients and families. The aim of this narrative review is to describe what is known about eating-related distress and the roles of integrated palliative, supportive, and nutritional care in improving QOL of patients and families.
The role of early palliative care involvement for patients with cancer is being increasingly recognized for patients with incurable cancer as more studies demonstrate that it is feasible, cost-effective and efficacious. Patients benefit from improved symptom control, better supported decision making and improved quality of life. It has been shown to be effective alongside disease-modifying treatment, and evidence supports the use of multidisciplinary care in a co-management role. It is also a cost-effective way to reduce unnecessary and overly-aggressive treatment at the end of life. Efforts are needed to alleviate persistent misconceptions and support program development in areas where access is limited.
PURPOSE OF REVIEW: The number of patients who die in the hospital in the Western world is high, and 20-30% of them are admitted to an ICU in the last month of life, including those in cardiac ICUs (CICUs) where invasive procedures are performed and mortality is high. Palliative consultation is provided in only a few cases. The ethical and decisional aspects associated with the advanced stages of illness are very rarely discussed.
RECENT FINDINGS: The epidemiological and clinical landscape of CICUs has changed in the last decade; the incidence of acute coronary syndromes has decreased, whereas noncardiovascular diseases, comorbidities, the patients' age and clinical and therapeutic complexity have increased. The use of advanced and invasive treatments, such as mechanical ventilation, mechanical circulatory support and renal replacement therapies, has increased. This evolution increases the possibility of developing a life-threatening clinical event.
SUMMARY: This review aimed to analyze the main epidemiological, clinical, ethical and training aspects that can facilitate the introduction of supportive/palliative care programs in the CICU to improve symptom management during the advanced/terminal stages of illness, and address such issues as advance care planning, withdrawing/withholding life-sustaining treatments, deactivation of implantable defibrillators and palliative sedation.
Background: Older people in Thailand receive general medical and social care at the end of life, and many rarely access palliative services. In light of this, improving the quality of care for the ageing population relies on addressing the needs of family caregivers, who provide the majority of care in a home setting. Understanding caregivers' perspectives when caring for a friend or relative will help to improve the quality of care that they provide.
Aim: To explore caregivers' perspectives on improving care for older people in Thailand in the palliative stage.
Methods: A qualitative study using in-depth interviews and observation of 10 older people in the palliative stage and their caregivers was undertaken. Data were analysed using content analysis.
Findings: Data analysis revealed three themes: caregivers cared to repay the older person's previous kindness, caregivers cared and changed their caregiving behaviour to minimise the older person's perception of being abandoned or being a burden, and to follow Thai ancestral traditions, so that the older person could die peacefully.
Conclusion: This study provides specific instructions for those who provide care for older Thai people in the palliative stage. Finding ways to address caregivers' perspectives on improving care quality could enhance the experience of care recipients.
Context: The effect of methadone on corrected QT interval (QTc) in patients with cancer pain is not well-known.
Objectives: To describe and characterize the effect of low-, moderate-, and high-dose enteral methadone on QTc interval in patients with cancer.
Methods: Retrospective cohort study including patients prescribed enteral methadone during the 27-month study period. Participants were divided into 3 methadone daily dose groups: <30 (low dose), 30 to 59 (moderate dose), =60 (high dose) mg. The primary outcome was the incidence of QTc prolongation (>450 ms for females and >430 ms for males). Secondary outcomes included the magnitude of change in QTc after starting methadone, the incidence of clinically significant QTc prolongation (>500 ms) and the prevalence of torsades de pointes and syncope.
Results: Two hundred three patients met study inclusion criteria: 91 (45%) low dose, 52 (26%) moderate dose, and 60 (29%) high dose. Incidence of QTc prolongation for low-, moderate-, and high-dose groups was 50 (55%), 37 (71%), and 43 (72%), respectively (P = .039, low vs high dose). Incidence of clinically significant QTc prolongation was 10 (11%), 4 (8%), and 7 (12%) for low-, moderate-, and high-dose groups. For patients without QTc prolongation prior to initiating methadone, 62% of moderate-dose patients and 67% of high-dose patients had QTc prolongation, while taking methadone.
Conclusion: This study found a notably high incidence of QTc prolongation in patients with cancer using enteral methadone. Future studies should aim to determine the risk of adverse cardiac effects in the cancer population and determine appropriate monitoring of methadone for pain management.
Shortly after radiotherapy was first used in the treatment of cancer in the late 1800s, adistinction was created between radical or curative radiotherapy and palliative radio-therapy with markedly divergent goals. In contrast with radical radiotherapy, in whichthe treatment goal is cure of cancer, palliative radiotherapy focuses on the applicationof radiotherapy to improve symptoms, with the goal of maximizing quality of life.
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