Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis.

A range of professional figures are needed to preserve the quality of life of people with amyotrophic lateral sclerosis. This study aimed to explore the beginning of the care process as negotiated by people with amyotrophic lateral sclerosis, their caregivers, and healthcare professionals. We designed the study according to the constructivist Grounded Theory method, collecting data through open-ended, semi-structured interviews, employing theoretical sampling and constant comparison, and performing conceptual coding as data analysis. By naming the core category "off-beat interfacing", we were able to show how the demands of the professionals concerned did not correspond to the ability of people with ALS and their proxies to process information, deal with requests, and be at ease in making decisions at the beginning of the shared care pathway. Three categories were generated: (i) navigating different paths, (ii) offering and experiencing a standard, non-personalized pathway, and (iii) anticipating decisions. The network of services must be organized according to guidelines, but must also contemplate a patient-family-centered approach that permits more personalized assistance.

Dignity Therapy Training for the Healthcare Professionals: Lessons Learned From an Italian Experience.

Introduction: Dignity therapy (DT) is brief psychotherapy targeting psychological and existential suffering among patients with a life-limiting illness. Studies have been conducted on the use of DT by healthcare professionals. In Italy, the current legislation defines that any form of psychotherapy may be performed exclusively by psychotherapists. Consequently, this intervention is unlikely to be used by other healthcare professionals. Herein, we will describe a training on DT not as a psychotherapy intervention but as a narrative intervention for non-psychotherapists health care professionals. Finally, we will explore the potential enablers/barriers as experienced by palliative care physicians and nurses. Methods: The study was conducted in the Psycho-Oncology Unit within the Cancer Research Hospital of Reggio Emilia (Italy). It consisted of an exploratory qualitative case study. Data were collected employing observations and interview data and thematically analyzed. Results: The training was attended by six physicians and ten nurses and took place during two-afternoon sessions for 10 h. Two participants put their training into practice and administered DT under the supervision of a psychotherapist. Data analysis highlighted five overarching themes relating to the training experience and direct use of DT, namely, (i) time required, (ii) psychological skills, (iii) patient's disease awareness, (iv) patient's life history, and (v) distinguishing DT from Advance Care Planning. Conclusion: Palliative care professionals found DT to be a valuable non-pharmacological hospital-based intervention to address the person beyond the patient and his clinical conditions. In our experience, considering that in Italy, psychotherapy is an intervention that psychotherapists can only perform, it can help organize different training on DT for psychotherapists and other healthcare professionals.

Lesson Learned From Hospital Palliative Care Service in a Cancer Research Center in Italy: Results of 5 Years of Experience.

Background: International studies have documented that over a third of all hospital beds are occupied by patients with palliative care needs in their last year of life. Experiences of Palliative Care Services that take place prevalently or exclusively in hospital settings are very few in Italy. Objective: Describe clinical, educational and research activities performed by a hospital PCS and discussing opportunities and critical issues encountered in an Italian Cancer Center. Method: Retrospective data regarding adults with advanced stage diseases referred from January 2015 to December 2019. Results: Clinical activity - The PCS performed 2422 initial consultations with an average of 484 initial consultations per year. A majority of patients had advanced cancer, from 85% to 72%, with an average of 2583 total consultations per year and an average of 4.63 consultations per patient. The penetrance has increased over time from 6.3% to 15.75%. Educational and research activity - Since 2015, PCS has provided training to health professionals (HPs) of different departments of our hospital. Most of the educational projects for HPs were part of research projects, for example the communication training program, management of pain and end-of-life symptoms and the training program for PC-based skills. Conclusion: Our data suggests that a PCS able to provide palliative care to inpatients and outpatient and continuous training support to other hospital specialists can relatively quickly improve the level of its penetrance in hospital activities.

Consultations' demand for a hospital palliative care unit: how to increase appropriateness? Implementing and evaluating a multicomponent educational intervention aimed at increase palliative care complexity perception skill.

BACKGROUND: Planned, multidisciplinary teams' discussions of cases are common in cancer care, but their impact on patients' outcome is not always clear. Palliative care (PC) needs might emerge long before the last weeks of life. Many palliative care patients could be managed from the usual care staff, if appropriately trained; specialist palliative care should be provided to patients with more complex needs. Staff needs adequate training, so that only patients presenting a higher complexity are properly referred to the second level ("specialized") PC services. In the considered hospital setting, "tumour boards" (multidisciplinary discussions) refer often to a low number of patients. Overall complexity of patients' needs is hardly considered. METHODS: A mixed method pilot study with data triangulation of professionals' interviews and an independently structured evaluation of complexity of referred patients, before and after the intervention, using the PALCOM instrument. We trained four teams of professionals to deliver first-level palliation and to refer patients with complex needs detected in multidisciplinary discussions. A multicomponent, first level PC educational intervention, including information technology's adaptation, a training course, and bedside training was offered from the specialized PC Services, to all the HPs involved in multidisciplinary pancreas, lung, ovarian, and liver tumour boards. RESULTS: While the level of complexity of referred patients did not increase, trainees seemed to develop a better understanding of palliative care and a higher sensitivity to palliative needs. The number of referred patients increased, but patients' complexity did not. Qualitative data showed that professionals seemed to be more aware of the complexity of PC needs. A "meaning shift" was perceived, specifically on the referral process (e.g., "when" and "for what" referring to specialist PC) and on the teams' increased focus on patients' needs. The training, positively received, was adapted to trainees' needs and observations that led also to organizational modifications. CONCLUSIONS: Our multicomponent intervention positively impacted the number of referrals but not the patients' complexity (measured with the PALCOM instrument). Hospital staff does not easily recognize that patients may have PC needs significantly earlier than at the end of life.

Behavioral Patterns in Breaking Bad News Communication: An Ethnographic Study with Hematologists.

Hematologists adequately disclosing bad news is a critical point precluding patient-centered communication. Specific courses on communication for hematologists seem to be rare, as well as research exploring their communicative skills and patterns. We aim at describing the hematologists' behavior during difficult conversations to account for behavioral patterns in communication and provide new insights regarding teaching skills to communicate bad news. We employed a focused visual ethnography to answer the following research: "what are hematologists' behavioral patterns in communicating bad news to patients and families?" The collected data included (1) video recordings, (2) observational field notes, (3) interviews with hematologists. The analysis highlighted four patterns: (1) a technical-defensive pattern, (2) an authoritative pattern, (3) a relational-recursive pattern, and (4) a compassionate sharing pattern. Hematologists seem to have difficulty expressing compassionate caring and empathetic comprehension. Communication skills remain a challenge for hematologists. The study of behavioral patterns can lead to increasingly targeted training interventions for this specific learner population.

Self-Care as a Method to Cope With Suffering and Death: A Participatory Action-Research Aimed at Quality Improvement.

Introduction: Palliative care is an emotionally and spiritually high-demanding setting of care. The literature reports on the main issues in order to implement self-care, but there are no models for the organization of the training course. We described the structure of training on self-care and its effects for a Hospital Palliative Care Unit. Method: We used action-research training experience based mostly on qualitative data. Thematic analysis of data on open-ended questions, researcher's field notes, oral and written feedback from the trainer and the participants on training outcomes and satisfaction questionnaires were used. Results: Four major themes emerged: (1) "Professional role and personal feelings"; (2) "Inside and outside the team"; (3) "Do I listen to my emotions in the care relationship?"; (4) "Death: theirs vs. mine." According to participants' point of view and researchers' observations, the training course resulted in ameliorative adjustments of the program; improved skills in self-awareness of own's emotions and sharing of perceived emotional burden; practicing "compassionate presence" with patients; shared language to address previously uncharted aspects of coping; allowing for continuity of the skills learned; translation of the language learned into daily clinical practices through specific facilitation; a structured staff's support system for emotional experiences. Discussion: Self-care is an important enabler for the care of others. The core of our intervention was to encourage a meta-perspective in which the trainees developed greater perspicacity pertaining to their professional role in the working alliance and also recognizing the contribution of their personal emotions to impasse experienced with patients.

Providing dignity therapy to patients with advanced cancer: a feasibility study within the setting of a hospital palliative care unit.

BACKGROUND: Dignity is a basic principle of palliative care and is intrinsic in the daily practice of professionals assisting individuals with incurable diseases. Dignity Therapy (DT) is a short-term intervention aimed at improving the sense of purpose, meaning and self-worth and at reducing the existential distress of patients facing advanced illness. Few studies have examined how DT works in countries of non-Anglo Saxon culture and in different real-life settings. Moreover, most studies do not provide detailed information on how DT is conducted, limiting a reliable assessment of DT protocol application and of its evaluation procedure. The aim of this study was to assess the feasibility and acceptability of a nurse-led DT intervention in advanced cancer patients receiving palliative care. METHOD: This is a mixed-method study using before and after evaluation and semistructured interviews. Cancer patients referred to a hospital palliative care unit were recruited and provided with DT. The duration of sessions, and timeframes concerning each step of the study, were recorded, and descriptive statistical analyses were performed. The patients' dignity-related distress and feedback toward the intervention were assessed through the Patient Dignity Inventory and the Dignity Therapy Patient Feedback Questionnaire, respectively. Three nurses were interviewed on their experience in delivering the intervention, and the data were analyzed qualitatively. RESULTS: A total of 37/50 patients were enrolled (74.0%), of whom 28 (75.7%) completed the assessment. In 76.7% of cases, patients completed the intervention in the time limit scheduled in the study. No statistically significant reduction in the Patient Dignity Inventory scores was observed at the end of the intervention; most patients found DT to be helpful and satisfactory. Building opportunities for personal growth and providing holistic care emerged among the facilitators to DT implementation. Nurses also highlighted too great of a time commitment and a difficult collaboration with ward colleagues among the barriers. CONCLUSIONS: Our findings strongly support the acceptability, but only partially support the feasibility, of nurse-led DT in advanced cancer patients in a hospital setting. Further research is needed on how to transfer the potential benefits of DT into clinical practice. TRIAL REGISTRATION: Retrospectively registered on ClinicalTrial.gov NCT04738305 .

The Specialist Palliative Care Nurses' in an Italian Hospital: role, competences, and activities.

BACKGROUND AND AIM OF THE WORK: Many authors tried to clarify the palliative care nurses' role, overall in the home care setting, but little is known in different settings of care. We aim to present a Specialist profile of palliative care (PC) nurses in an Italian hospital-based Palliative Care Unit. METHODS: With an organizational case study approach, we conducted a literature review on PC nurse's role, and we presented the Specialist PC nurses' profile, describing competences and key related activities. RESULTS: Our specialist profile highlights that clinical activities are similar to the experiences described in the literature (symptom assessment and management, communication, interprofessional work), while training and research activities are new fields of interest that it's important to explore and promote, most of all in our country. CONCLUSIONS: Sustaining the flexibility of the role, being recognized by colleagues and keeping the three dimensions connected are the major challenges: drawing up a specialist palliative care nurses' profile can help the team to better define the role framework in an interdisciplinary context.

Palliative care in the emergency department as seen by providers and users: a qualitative study.

BACKGROUND: Much effort has been made to explore how patients with advanced chronic illness and their families experience care when they attend the Emergency Department, and many studies have investigated how healthcare professionals perceive Palliative Care provision in the Emergency Department. Various models exist, but nonetheless incorporating palliative care into the Emergency Department remains challenging. Considering both healthcare professionals' and users' perspective on problems encountered in delivering and receiving appropriate palliative care within this context may provide important insight into meaningful targets for improvements in quality of care. Accordingly, this study aims at exploring issues in delivering palliative care in the Emergency Department from the perspective of both providers and users, as part of a larger project on the development and implementation of a quality improvement program in Italian Emergency Departments. METHODS: A qualitative study involving focus group interviews with Emergency Department professionals and semi-structured interviews with patients with palliative care needs in the Emergency Department and their relatives was conducted. Both datasets were analyzed using Thematic Analysis. RESULTS: Twenty-one healthcare professionals, 6 patients and 5 relatives participated in this study. Five themes were identified: 1) shared priorities in Emergency Department among healthcare professionals and patients, 2) the information provided by healthcare professionals and that desired by relatives, 3) perception of environment and time, 4) limitations and barriers to the continuity of care, and 5) the contrasting interpretations of giving and receiving palliative care. CONCLUSIONS: This study provides insights into targets for changes in Italian Emergency Departments. Room for improvement relates to training for healthcare professionals on palliative care, the development of a shared care pathway for patients with palliative care needs, and the optimization of Emergency Department environment. These targets will be the basis for the development of a quality improvement program in Italian Emergency Departments.

Systematic vs. on-demand early palliative care in gastric cancer patients: a randomized clinical trial assessing patient and healthcare service outcomes.

PURPOSE: Early palliative care (EPC) has shown a positive impact on quality of life (QoL), quality of care, and healthcare costs. We evaluated such effects in patients with advanced gastric cancer. METHODS: In this prospective, multicenter study, 186 advanced gastric cancer patients were randomized 1:1 to receive standard cancer care (SCC) plus on-demand EPC (standard arm) or SCC plus systematic EPC (interventional arm). Primary outcome was a change in QoL between randomization (T0) and T1 (12 weeks after T0) in the Trial Outcome Index (TOI) scores evaluated through the Functional Assessment of Cancer Therapy-Gastric questionnaire. Secondary outcomes were patient mood, overall survival, and family satisfaction with healthcare and care aggressiveness. RESULTS: The mean change in TOI scores from T0 to T1 was - 1.30 (standard deviation (SD) 20.01) for standard arm patients and 1.65 (SD 22.38) for the interventional group, with a difference of 2.95 (95% CI - 4.43 to 10.32) (p = 0.430). The change in mean Gastric Cancer Subscale values for the standard arm was 0.91 (SD 14.14) and 3.19 (SD 15.25) for the interventional group, with a difference of 2.29 (95% CI - 2.80 to 7.38) (p = 0.375). Forty-three percent of patients in the standard arm received EPC. CONCLUSIONS: Our results indicated a slight, albeit not significant, benefit from EPC. Findings on EPC studies may be underestimated in the event of suboptimally managed issues: type of intervention, shared decision-making process between oncologists and PC physicians, risk of standard arm contamination, study duration, timeliness of assessment of primary outcomes, timeliness of cohort inception, and recruitment of patients with a significant symptom burden. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov (NCT01996540).

Systematic versus on-demand early palliative care: A randomised clinical trial assessing quality of care and treatment aggressiveness near the end of life.

AIM: Early palliative care (EPC) in oncology has shown sparse evidence of a positive impact on patient outcomes, quality of care outcomes and costs. PATIENTS AND METHODS: Data for this secondary analysis were taken from a trial of 207 outpatients with metastatic pancreatic cancer randomly assigned to receive standard cancer care plus on-demand EPC (standard arm) or standard cancer care plus systematic EPC (interventional arm). After 20 months' follow-up, 149 (80%) had died. Outcome measures were frequency, type and timing of chemotherapy administration, use of resources, place of death and overall survival. RESULTS: Some indices of end-of-life (EoL) aggressiveness had a favourable impact from systematic EPC. Interventional arm patients showed higher use of hospice services: a significantly longer median and mean period of hospice care (P = 0.025 for both indexes) and a significantly higher median and mean number of hospice admissions (both P < 0.010). In the experimental arm, chemotherapy was performed in the last 30 days of life in a significantly inferior rate with respect to control arm: 18.7% versus 27.8% (adjusted P = 0.036). Other non-significant differences were seen in favour of experimental arm. CONCLUSIONS: Systematic EPC showed a significant impact on some indicators of EoL treatment aggressiveness. These data, reinforced by multiple non-significant differences in most of the other items, suggest that quality of care is improved by this approach. This study is registered on ClinicalTrials.gov (NCT01996540).

End-of-life care: pathways and evidence.

PURPOSE OF REVIEW: Studies in different countries and settings of care have reported the quality of care for the dying patients as suboptimal. Care pathways have been developed with the aim of ensuring that dying patients and their family members received by health professionals the most appropriate care. This review presents and discusses the evidence supporting the effectiveness of the end-of-life care pathways. RECENT FINDINGS: Two Cochrane systematic reviews updated at June 2013 did not identify studies that met minimal criteria for inclusion. One randomized cluster trial aimed at assessing the effectiveness of the Liverpool Care Pathway in hospitalized cancer patients was subsequently published. The trial did not find a significant difference in the overall quality of care, the primary end-point, but two out of nine secondary outcomes - respect, dignity, and kindness, and control of breathlessness showed significant improvements. Afterwards, we did not find any other potentially eligible published study. SUMMARY: The overall amount of evidence supporting the dissemination of end-of-life care pathways is rather poor. One negative randomized trial suggests the pathways have the potential to reduce the gap between hospital and hospices. Further research is needed to understand the potential benefit of end-of-life care pathways.

Low-grade myofibroblastic proliferations of the urinary bladder.

CONTEXT: Myofibroblastic proliferations of the urinary bladder, which share some similarities with nodular fasciitis, were first reported in 1980. Since then, they have had several designations, the most frequently used being inflammatory myofibroblastic tumor. Based on both histopathologic and prognostic grounds, some authors prefer the term pseudosarcomatous myofibroblastic proliferation, at least for some of the proliferations. These same scientists also assimilate the so-called postoperative spindle cell nodules with the pseudosarcomatous myofibroblastic proliferations. Little is known about these low-grade myofibroblastic proliferations. OBJECTIVES: To review the literature about low-grade myofibroblastic proliferations occurring in the urinary bladder. DATA SOURCES: Textbooks and literature review. We obtained most of the clinicopathologic peculiarities from a patient population composed of the most-relevant, previously reported cases. CONCLUSIONS: The low-grade myofibroblastic proliferations of the urinary bladder are rare lesions affecting males more often than they do females. The most-common signs and symptoms are hematuria and dysuria. Histopathologically, they are spindle cell proliferations in a loose myxoid stroma, even though compact proliferations or hypocellular fibrous patterns can be found. Immunohistochemistry is quite nonspecific, except for ALK-1 positivity (20%-89%). Fluorescence in situ hybridization has demonstrated clonal genetic aberrations involving the ALK gene in 50% to 60% of cases. After surgery, only 6% of patients experience local recurrence, without metastases or deaths from the disease. Malignant transformation has been reported exceptionally. These myofibroblastic proliferations are probably part of a continuum with, at one end, benign pseudosarcomatous proliferations and, at the opposite end, more-aggressive lesions. Because of the frequently indolent clinical course, aggressive treatment would be unjustified.

A small intraneural epithelioid malignant peripheral nerve sheath tumour of the median nerve simulating a benign lesion: description of a case and review of the literature.

The epithelioid variant of malignant peripheral nerve sheath tumours (MPNSTs) is a very rare malignancy. We describe the case of a 30-year-old man complaining of acute pain in his right elbow, mild distal paraesthesias, and some motor deficiencies. He was discovered as having a small fusiform swelling of the median nerve. In view of its very small size, shape, and nonspecific MRI signal, it had initially suggested a benign lesion. The diagnosis of epithelioid MPNST was made only at the histopathological examination. This malignant neoplasm recurred locally fourteen months after surgery. In addition to describe the above very rare case, we have reviewed the literature on epithelioid MPNSTs clearly involving deep major nerve trunks. This case serves as a warning that, even in major nerve trunks, tiny lesions may in reality be early intraneural MPNSTs which, due to their deep location, must be treated adequately with wide margin surgery since the resection margin status represents one of the major parameters influencing the local control of disease and its clinical outcome.