Context: Patients with advanced cancer face a life-limiting condition that brings a high symptom burden that often includes pain, fatigue, and psychological distress. Psychosocial interventions have promise for managing symptoms but need additional tailoring for these patients' specific needs. Patients with advanced cancer in the community also face persistent barriers—availability of interventions in community clinics as well as financial and illness-related factors—to accessing psychosocial interventions.
Objectives: The aim of the present study was to assess the feasibility and acceptability of telephone implementation of Engage, a novel brief combined Coping Skills Training and Acceptance and Commitment Therapy protocol, for reducing symptoms and increasing quality of life in community patients with advanced cancer.
Methods: Adult patients with advanced cancer receiving care in the community received Engage, four 60-minute manualized telephone sessions delivered by a trained psychotherapist and completed pretreatment and post-treatment assessments.
Results: Engage was feasible, achieving 100% accrual (N = 24) of a heterogeneous sample of patients with advanced cancer, with good retention (88% completed). Acceptability was demonstrated via satisfaction (mean 29 of 32; SD 2), engagement (95% attendance), and use of skills. Secondary analyses pointed to reductions in pain interference, fatigue, psychological distress, and improvements in psychological acceptance and engagement in value-guided activity after treatment.
Conclusion: Engage, our brief novel combined Coping Skills and Acceptance and Commitment Therapy intervention, demonstrated initial feasibility and acceptability when delivered over the telephone and increased access for community clinic patients with advanced cancer. Future research will assess the comparative efficacy of Engage in larger randomized trials.
This issue of Medical Clinics, guest edited by Dr. Eric Widera, is devoted to Palliative Care. Articles in this important issue include: Hospice and palliative care: an overview; Goals of care conversations in palliative care: A practical guide; The art and science of prognostication in palliative care; Recognizing and managing polypharmacy in advanced illness; Pain management in those with serious illness; Management of grief, depression, and suicidal thoughts in those with serious illness; Management of respiratory symptoms in those with serious illness; Management of gastrointestinal symptoms inadvanced illness; Management of urgent medical conditions at the end of life; Delirium at the end of life; Options of last resort: palliative sedation, Physician aid in dying and voluntary cessation of eating and drinking; Cannabis for symptom management; and Self-care of physicians caring for patients with serious illness.
This insightful study examines the deeply personal and heart-wrenching tensions among financial considerations, emotional attachments, and moral arguments that motivate end-of-life decisions.
America’s health care system was built on the principle that life should be prolonged whenever possible, regardless of the costs. This commitment has often meant that patients spend their last days suffering from heroic interventions that extend their life by only weeks or months. Increasingly, this approach to end-of-life care is coming under scrutiny, from a moral as well as a financial perspective. Sociologist Roi Livne documents the rise and effectiveness of hospice and palliative care, and growing acceptance of the idea that a life consumed by suffering may not be worth living.
Values at the End of Life combines an in-depth historical analysis with an extensive study conducted in three hospitals, where Livne observed terminally ill patients, their families, and caregivers negotiating treatment. Livne describes the ambivalent, conflicted moments when people articulate and act on their moral intuitions about dying. Interviews with medical staff allowed him to isolate the strategies clinicians use to help families understand their options. As Livne discovered, clinicians are advancing the idea that invasive, expensive hospital procedures often compound a patient’s suffering. Affluent, educated families were more readily persuaded by this moral calculus than those of less means.
Once defiant of death—or even in denial—many American families and professionals in the health care system are beginning to embrace the notion that less treatment in the end may be better treatment.
Despite significant advances in heart failure (HF) treatment, HF remains a progressive, extremely symptomatic, and terminal disease with a median survival of 2.1 years after diagnosis. HF often leads to a constellation of symptoms, including dyspnea, fatigue, depression, anxiety, insomnia, pain, and worsened cognitive function. Palliative care is an approach that improves the quality of life of patients and their caregivers facing the problems associated with life-threatening illness and therefore is well suited to support these patients. However, historically, palliative care has often focused on supporting patients with malignant disease, rather than a progressive chronic disease such as HF. Predicting mortality in patients with HF is challenging. The lack of obvious transition points in disease progression also raises challenges to primary care providers and specialists to know at what point to integrate palliative care during a patient's disease trajectory.
Although therapies for HF often result in functional and symptomatic improvements including health-related quality of life (HRQL), some patients with HF do not demonstrate these benefits, including those patients with a preserved ejection fraction. Provision of palliative care for patients with HF requires an understanding of HF pathogenesis and common medications used for these patients, as well as an approach to balancing life-prolonging and HRQL care strategies. This review describes HF and current targeted therapies and their effects on symptoms, hospital admission rates, exercise performance, HRQL, and survival. Pharmacological interactions with and precautions related to commonly used palliative care medications are reviewed. The goal of this review is to equip palliative care clinicians with information to make evidence-based decisions while managing the balance between optimal disease management and patient quality of life.
Context: Although it is well known that patients with advanced pancreatic cancer (PC) experience significant symptom burden, few strategies for effective symptom intervention are available for them.
Objectives: To investigate the efficacy of minocycline, an anti-inflammatory agent, for symptom reduction in patients with advanced PC.
Methods: We conducted Phase II, randomized, and placebo-controlled trial to obtain preliminary estimates of the effects on symptom reduction with 100 mg of minocycline or placebo given twice a day. Eligible patients had diagnosed advanced PC and were scheduled for standard chemotherapy. Patient-reported symptoms were measured weekly during the eight-week trial using the MD Anderson Symptom Inventory (MDASI) module in patients with gastrointestinal cancer. The primary outcome measure was the area under the curve values of the five most severe symptoms in the two arms.
Results: Of the 44 patients recruited, 31 (71%) were evaluable for the primary efficacy analysis, with 18 received minocycline and 13 placebo. Fatigue, pain, disturbed sleep, lack of appetite, and drowsiness were the most severe symptoms reported by both groups. No significant differences in area under the curve values over time between the study arms were found for the composite MDASI score or single-item scores of the five most severe MDASI items. No treatment-related deaths were reported, and no Grade 3–4 toxicities were observed.
Conclusion: Minocycline is safe for use in patients receiving treatment for PC. There is no observed symptom reduction with minocycline on the major symptom burden associated with advanced PC compared with placebo. Attrition because of rapid disease progression impacted the study significantly.
Context: Patients with significant burn injuries likely have palliative care needs.
Objectives: We performed a systematic review of existing evidence concerning the palliative care needs of burn patients.
Methods: Through November 26, 2018, we systematically searched PubMed, CINAHL, Embase, Web of Science, and Scopus, using terms representing burn injuries and the eight domains of quality palliative care as outlined by the National Consensus Project for Quality Palliative Care. Eligible articles involved burn-injured patients treated with an intervention targeting at least one of the eight domains.
Results: Our searches yielded 7532 unique records, which led to 238 articles for full review and 88 studies that met inclusion criteria. Seventy-five studies addressed the domain physical aspects of care and merit a separate systematic review; 13 studies were included in our final review. Four of the seven domains—processes of care, psychologic symptoms, social aspects, and end of life—were addressed by studies but three domains—spiritual, cultural, or ethics—were unaddressed. Included studies highlight potential benefits from peridischarge self-care education programs, peer support, and group therapy in improving quality of life. In patients with severe injuries, end-of-life decision-making protocols were associated with increased utilization of comfort-focused treatments.
Conclusion: Most existing palliative care-related research in burn patients addresses interventions for physical symptoms with minimal literature concerning other domains. Opportunities exist for further research of palliative care in burn populations with emphasis on addressing interventions for all domains and better standardizing the language and outcomes for the palliative care interventions.
Context: Older adults with advanced lung cancer experience high symptom burden at end of life (EOL), yet hospice enrollment often happens late or not at all. Receipt of medications to manage symptoms in the outpatient setting, outside the Medicare hospice benefit, has not been described.
Objectives: We examined patterns of symptom management medication receipt at EOL for older adults who died of lung cancer.
Methods: This retrospective cohort used the Surveillance, Epidemiology, and End Results—Medicare database to identify decedents diagnosed with lung cancer at age 67 years and older between January 2008 and December 2013 who survived six months and greater after diagnosis. Using Medicare Part B and D claims, we identified monthly receipt of outpatient medications for symptomatic management of pain, emotional distress, fatigue, dyspnea, anorexia, and nausea/vomiting. Multivariable logistic regression estimated associations between medication receipt and patient demographic characteristics, comorbidity, and concurrent therapy.
Results: Of the 16,246 included patients, large proportions received medications for dyspnea (70.7%), pain (62.5%), and emotional distress (49.4%), with lower prevalence for other symptoms. Medication receipt increased from six months to one month before death. Women and dual Medicaid enrolled were more likely to receive medications for pain, emotional distress, dyspnea, and nausea/vomiting. Receipt of symptom management medications decreased with increasing age and racial/ethnical minorities.
Conclusion: Symptom management medication receipt was common and increasing toward EOL. Lower use by males, older adults, and nonwhites may reflect poor access or poor patient-provider communication. Further research is needed to understand these patterns and assess adequacy of symptom management in the outpatient setting.
Context: Evidence-based resource allocation is receiving increasing attention as we strive for equity, transparency, and cost-effectiveness across health care. In the context of finite resources, which of our patients with terminal illness should be prioritized for urgent palliative care?
Objectives: To develop the scoring system for the novel Responding to Urgency of Need in Palliative Care triage tool.
Methods: Online international discrete choice experiment involving palliative care clinicians to establish the relative importance of seven key attributes of palliative care triage identified during an earlier qualitative study.
Results: Participants (n = 772) were mainly female (79.9%) with a decade of clinical experience. All attributes contributed significantly (all P-values < 0.001) and independently to clinician assessment of urgency. This study found physical suffering (coefficient 3.45; 95% confidence interval: 3.24 to 3.66) was the most important determinant of urgency, followed by imminent dying (coefficient 1.56; 1.43 to 1.69), psychological suffering (coefficient 1.49; 1.37 to 1.60), caregiver distress (coefficient 1.47; 1.35 to 1.59), discrepancy between care needs and care arrangements (coefficient 1.14; 1.02 to 1.26), mismatch between current and desired site of care (coefficient 0.94; 0.85 to 1.03), and unmet communication needs (coefficient 0.84; 0.76 to 0.92).
Conclusion: Palliative care triage, which is complex and contextual, has been made more transparent through this discrete choice experiment. The Responding to Urgency of Need in Palliative Care triage tool provides an important step toward evidence-based assessment of priority for palliative care. Further research is underway to determine the validity of the tool in clinical practice and its impact on patient and caregiver outcomes.
Dans cette réflexion sur les soins palliatifs, nous pointons la parole médicale comme structurellement traumatique.
Fréquemment, elle bloque le sujet à l’Éternel présent et rend difficile la projection vers l’à-venir.
Nous avançons ici l’idée que l’accompagnement palliatif aide à se dégager de ce traumatisme. Nous distinguerons deux positions relationnelles différentes dans le rapport au patient, positions qui occasionnent des modalités distinctes de maniement de la parole...
Hospice volunteers are a high-risk group for anxiety and depression owing to their frequent exposure to patients at the end of life and their subsequent deaths. Resilience is known to be a powerful factor that affects the occurrence of anxiety and depression; however, research on this subject is scarce. We investigated the relationship of resilience with anxiety or depression in hospice volunteers. A total of 145 volunteers were included in the analysis. Participants completed self-reported scales, including the Korean version of the Connor-Davidson Resilience Scale, the State-Trait Anxiety Inventory, Patient Health Questionnaire-9, and the Professional Quality of Life Scale version 5. Pearson correlation coefficients were analyzed to identify the relationship of compassion satisfaction and compassion fatigue with anxiety or depression. A PROCESS macro mediation analysis was used to investigate the mediation effects of compassion satisfaction and compassion fatigue on the relationship between resilience and anxiety or depression. There were significant associations of compassion satisfaction and compassion fatigue with anxiety and depression. The relationship between resilience and anxiety/depression was mediated by compassion fatigue, which had indirect effects on anxiety and depression. Efforts to reduce compassion fatigue and increase resilience could help prevent anxiety and depression in hospice volunteers.
In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally mandated option for children and their families, no review of the science has been conducted. The purpose of this study was to systematically collect the evidence on concurrent hospice care, critically appraise the evidence, and identify areas for future nursing research. Of the 186 articles identified for review, 14 met the inclusion and exclusion criteria. Studies in this review described concurrent hospice care from a variety of perspectives: policy, legal, and ethics. However, only 1 article evaluated the impact of concurrent hospice care on outcomes, whereas several studies explained clinical and state-level implementation. There is a need for further studies that move beyond conceptualization and generate baseline and outcomes data. Understanding the effectiveness of concurrent hospice care might provide important information for future nursing research. The approaches used to disseminate and implement concurrent hospice care at state, provider, and family levels should be explored.
This study aimed to identify the relationships of perception of hospice and palliative care with emotional intelligence and cognitive empathy in nursing students. The participants were 458 nursing students. Data were collected using structured questionnaires and analyzed with Pearson correlation coefficients, independent-samples t test, and binary logistic regression. Perception of hospice and palliative care was significantly and positively correlated with emotional intelligence (r = 0.224, P < .001) and cognitive empathy (r = 0.311, P < .001). Mean score differences of perception of hospice and palliative care by emotional intelligence and cognitive empathy were statistically significant (t = -3.973, P < .001; t = -4.109, P < .001, respectively). Logistic regression yielded an odds ratio of 1.860 (P < .001; 95% confidence interval, 1.283-2.698) between the perception of hospice and palliative care and emotional intelligence and an odds ratio of 2.028 (P < .001; 95% confidence interval, 1.394–2.951) between the perception of hospice and palliative care and cognitive empathy. Emotional intelligence and cognitive empathy should be cultivated to raise nursing students' perception of hospice and palliative care and must be included when developing related curricula and extracurricular programs.
Nurses spend more time with seriously and terminally ill patients across the continuum of care than other health professionals, yet nursing students lack adequate palliative care education and experience when they transition to practice. In response to the American Association of Colleges of Nursing CARES competencies for enhanced preparation in palliative care, the End-of-Life Nursing Education Consortium developed modules for undergraduate programs. Nursing students' life experiences and their prior involvement with death and dying situations shape their potential achievement of end-of-life learning outcomes. The purpose of this study was to explore traditional and nontraditional students' perspectives and outcomes of their lived experiences in response to the End-of-Life Nursing Education Consortium modules and current palliative care program curriculum. Following university institutional review board approval, the phenomenological qualitative study included 2 focus groups of traditional and transfer students. Thematic data analysis revealed 4 primary themes with differences noted between groups in response to these themes: (1) witnessing suffering and death, (2) building courage and competence, (3) conversation challenges, and (4) curriculum issues and recommendations. Implications for future palliative care education indicate opportunities to better support students through expanded simulations and debriefing sessions, integrated roles for clinical faculty and preceptors, and interdisciplinary team collaboration opportunities across settings.
A growing population of persons with a serious illness will place higher demands on health care professionals to provide the palliative care needed. A Palliative Care Advanced Practice Registered Nurse (APRN) Externship was developed and implemented as a novel way to increase access to palliative care with the potential to be replicated in multiple locations. Two APRN cohorts with a total of 10 APRNs participated in a 1-week educational program, including both classroom and clinical experiences, in 1 such site. The effectiveness of the program was evaluated by participants through an electronic survey and debriefings. Active learning experiences included role play, case studies, and clinical observation and were rated as highly valuable by participants. An important theme concerning the validation of current practice was identified. Future externship programs should be refined by incorporating participant feedback and continuing to use a variety of techniques to engage learners with diverse learning styles.
It is an international consensus that health care workers should be well trained to promote care for seriously ill and dying patients. Nursing students have reported that they feel inadequately prepared for palliative care. Simulation exercises have been described as increasing knowledge, skills, and competence, and participants have reported that they are more confident and prepared for palliative care with this learning approach than without. So far, there has not been much reported on how simulation contributes to learning in clinical practice. Therefore, this study explored whether learning outcomes from palliative care simulation further developed in practice. Second-year bachelor's-prepared nursing students voluntarily participated in a simulation activity as part of their hospital practice. Eleven students were interviewed about their learning experiences. The findings indicate that a prerequisite for further learning was to actively choose palliative care. Relationships with nurses, patients, and relatives and factors in themselves served as gatekeepers for attending learning situations. Becoming a nurse who can provide palliative care was described as an emotionally challenging experience. Elements that promoted learning outcomes in palliative care were simulation experience, clarified expectations, support, and a good dialog with the nurse before and after the learning situation.
Dans l’histoire de notre société, les progrès de la médecine, sur fond de paternalisme hippocratique, conduisent à des avancées considérables comme à des expérimentations de l’homme sur l’homme. Après le code de Nuremberg en 1947, l’autonomie s’impose. Le profane, en particulier le patient, revendique sa place au sein de la décision médicale. En découlent des conflits de valeurs entre acharnement thérapeutique et euthanasie. L’auteur explore ici la démarche éthique clinique menée en unité de soins palliatifs qui tente de répondre à certaines situations complexes en fin de vie. Par une approche sociologique et une introduction à la recherche, nous croisons le vécu de huit acteurs. L’un des points forts qui ressort est une dysrythmie temporelle, entre unicité et routine, temps et durée, que la démarche éthique tente de synchroniser.
Introduction : En France, plus de 618 000 résidents vivent en Établissement pour personnes âgées dépendantes (EHPAD) et plus de 125 000 y décèdent chaque année. Les difficultés éthiques y sont accrues en raison de la polypathologie et des troubles cognitifs. Les prises en charge des résidents en fin de vie ont été l’objet de recommandations de bonnes pratiques. Pourtant, les modalités de mise en oeuvre des soins palliatifs en EHPAD restent peu étudiées.
Objectifs : L’objectif était d’évaluer les pratiques de soins palliatifs en EHPAD.
Méthodes : Quatre Équipes mobiles de soins palliatifs (EMSP) et le Réseau qualité des établissements de santé de Bourgogne-Franche-Comté (REQUA) ont proposé un audit rétrospectif de dossiers dans le cadre d’une Évaluation des pratiques professionnelles (EPP) à 11 EHPAD volontaires de leur région.
Résultats : Dans ces établissements (1 596 places au total), 475 décès étaient survenus l’année précédant le recueil. Un échantillon de 295 dossiers était audité. Dans 91 % des cas les décès étaient survenus au sein des établissements. Parmi les 221 résidents décédés de façon non soudaine, lors de la dernière semaine de vie, 63 % avaient eu au moins une évaluation de la douleur, 47 % une contention (y compris barrières) et 36 % une hydratation artificielle. Dix pour cents des dossiers comportaient la trace d’une information des résidents à propos de leur état de santé. Conclusion : Ce travail identifie des axes d’amélioration des pratiques portant sur la prise en charge des douleurs, l’implication des résidents dans leur propre projet de fin de vie, et la nécessité d’une valorisation institutionnelle de l’interdisciplinarité.
In the partnership between the medical departments of Würzburg University, Germany, and Nagasaki University, Japan, palliative care is a relevant topic. The aim of the study was to perform a comparative analysis of the hospital-based palliative care teams in Würzburg (PCT-W) and Nagasaki (PCT-N). Survey of staff composition and retrospective analysis of PCT patient charts in both PCTs were conducted. Patients self-assessed their symptoms in PCT-W and in Radiation Oncology Würzburg (RO-W). The (negative) quality indicator 'percentage of deceased hospitalised patients with PCT contact for less than 3 days before death' (Earle in Int J Qual Health Care 17(6):505-509, 2005) was analysed. Both PCTs follow a multidisciplinary team approach. PCT-N saw 410 cancer patients versus 853 patients for PCT-W (22.8% non-cancer patients). The Eastern Cooperative Oncology Group Performance Status at first contact with PCT-N was 3 or 4 in 39.3% of patients versus 79.0% for PCT-W. PCT-N was engaged in co-management longer than PCT-W (mean 20.7 days, range 1-102 versus mean 4.9 days, range 1-48). The most frequent patient-reported psychological symptom was anxiety (family anxiety: 98.3% PCT-W and 88.7% RO-W, anxiety 97.9% PCT-W and 85.9% RO-W), followed by depression (98.2% PCT-W and 80.3% RO-W). In 14 of the 148 deceased patients, PCT-N contact was initiated less than 3 days before death (9.4%) versus 121 of the 729 deceased PCT-W patients (16.6%). Psychological needs are highly relevant in both Germany and Japan, with more than 85% anxiety and depression in patients in the Japanese IPOS validation study (Sakurai in Jpn J Clin Oncol 49(3):257-262, 2019). This should be taken into account when implementing PCTs.
Background: patients with palliative needs often experience high symptom burden which causes suffering to themselves and their families. Depression and psychological distress should not be considered a “normal event” in advanced disease patients and should be screened, diagnosed, acted on and followed-up. Psychological distress has been associated with greater physical symptom severity, suffering, and mortality in cancer patients. A holistic, but short measure should be used for physical and non-physical needs assessment. The Integrated Palliative care Outcome Scale is one such measure. This work aims to determine palliative needs of patients and explore screening accuracy of two items pertaining to psychological needs.
Methods: multi-centred observational study using convenience sampling. Data were collected in 9 Portuguese centres. Inclusion criteria: =18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness. Exclusion criteria: patient in distress (“unable to converse for a period of time”), cognitively impaired. Descriptive statistics used for demographics. Receiving Operator Characteristics curves and Area Under the Curve for anxiety and depression discriminant properties against the Hospital Anxiety and Depression Scale.
Results: 1703 individuals were screened between July 1st, 2015 and February 2016. A total of 135 (7.9%) were included. Main reason for exclusion was being healthy (75.2%). The primary care centre screened most individuals, as they have the highest rates of daily patients and the majority are healthy. Mean age is 66.8 years (SD 12.7), 58 (43%) are female. Most patients had a cancer diagnosis 109 (80.7%). Items scoring highest (=4) were: family or friends anxious or worried (36.3%); feeling anxious or worried about illness (13.3%); feeling depressed (9.6%). Using a cut-off score of 2/3, Area Under the Curve for depression and anxiety items were above 70%.
Conclusions: main palliative needs were psychological, family related and spiritual. This suggests that clinical teams may better manage physical issues and there is room for improvement regarding non-physical needs. Using the Integrated Palliative care Outcome Scale systematically could aid clinical teams screening patients for distressing needs and track their progress in assisting patients and families with those issues.