OBJECTIVE: The aims of the study were to examine patients' experiences of end-of-life (EOL) discussions and to shed light on patients' perceptions of the transition from curative to palliative care.
METHODS: This study was based on a qualitative methodology; we conducted semi-structured interviews with advanced cancer patients admitted to the palliative care unit (PCU) of the Medical University of Vienna. Interviews were recorded digitally and transcribed verbatim. Data were analyzed based on thematic analysis, using the MAXQDA software.
RESULTS: Twelve interviews were conducted with patients living with terminal cancer who were no longer under curative treatment. The findings revealed three themes: (1) that the medical EOL conversation contributed to the transition process from curative to palliative care, (2) that patients' information preferences were ambivalent and modulated by defense mechanisms, and (3) that the realization and integration of medical EOL conversations into the individual's personal frame of reference is a process that needs effort and information from different sources coming together.
CONCLUSIONS: The results of the present study offer insight into how patients experienced their transition from curative to palliative care and into how EOL discussions are only one element within the disease trajectory. Many patients struggle with their situations. Therefore, more emphasis should be put on repeated offers to have EOL conversations and on early integration of aspects of palliative care into the overall treatment.
Lung cancer is one of the main causes of cancer-related mortality worldwide. Over the years, different therapeutic modalities have been adopted depending on tumor stage and patient characteristics, such as surgery, radiotherapy (RT), and chemotherapy. Recently, with the development of immune-checkpoint inhibitors (ICI), the treatment of metastatic and locally advanced non-small cell lung cancer (NSCLC) has experienced a revolution that has resulted in a significant improvement in overall survival with an enhanced toxicity profile. Despite this paradigm shift, most patients present some kind of resistance to ICI. In this setting, current research is shifting towards the integration of multiple therapies, with RT and ICI being one of the most promising based on the potential immunostimulatory synergy of this combination. This review gives an overview of the evolution and current state of the combination of RT and ICI and provides evidence-based data that can improve patient selection. The combination in lung cancer is a safe therapeutic approach that improves local control and progression-free survival, and it has the potential to unleash abscopal responses. Additionally, this treatment strategy seems to be able to re-sensitize select patients that have reached a state of resistance to ICI, further enabling the continuation of systemic therapy.
Background: Many deaths in Norway occur in medical wards organized to provide curative treatment. Still, medical departments are obliged to meet the needs of patients at the end of life. Here, we analyse the electronic patient record regarding documentation of the transition from curative to palliative care (i.e. the ‘turning point’). Considering the consequences of these decisions for patients, they have received surprisingly little attention from researchers. This study aims to investigate how the patient record denotes reasons for the shift from curative treatment to palliation and how texts involve voices of the patient and their families.
Methods: The study comprised excerpts from electronic patient records retrieved from medical wards in three urban hospitals in Norway. We executed a retrospective analysis of anonymized extracts from 16 electronic patient records, searching for documentation on the transition from curative to palliative care.
Results: In the development of the turning point, the texts usually shift from statements about the patient’s clinical status and technical findings to displaying uncertainty and openness to negotiation with different textual voices. This shift may represent a need to align or harmonize the attitudes of colleagues, family, and patient towards the turning-point decision. The patient’s voice is mostly absent or reported only briefly when, in their notes, nurses gave an account of the patient’s opinion. None of the physicians’ notes provided a detailed account of patient attitudes, wishes, and experiences.
Conclusion: In this article, we have analysed textual representations of patient transitions from curative to end-of-life care. The ‘reality’ behind the text has not been our concern. As the only documentation left, the patient record is an adequate basis for considering how patients are estimated and cared for in their last days of life.
BACKGROUND: Patients with advanced haematological malignancies suffer from a very high symptom burden and psychological, spiritual, social and physical symptoms comparable with patients with metastatic non-haematological malignancy. Referral to palliative care services for these patients remains limited or often confined to the last days of life. We developed a palliative care intervention (PCI) integrated with standard haematological care. The aim of the study was focussed on exploring the feasibility of the intervention by patients, professionals and caregivers and on assessing its preliminary efficacy.
METHODS/DESIGN: This is a mixed-methods phase 2 trial. The Specialist Palliative Care Team (SPCT) will follow each patient on a monthly basis in the outpatient clinic or will provide consultations during any hospital admission. SPCT and haematologists will discuss active patient issues to assure a team approach to the patient's care. This quantitative study is a monocentric parallel-group superiority trial with balanced randomisation comparing the experimental PCI plus haematological standard care versus haematological standard care alone. The primary endpoint will calculate on adherence to the planned PCI, measured as the percentage of patients randomised to the experimental arm who attend all the planned palliative care visits in the 24 weeks after randomisation. The qualitative study follows the methodological indications of concurrent nested design and was aimed at exploring the acceptability of the PCI from the point of view of patients, caregivers and physicians.
DISCUSSION: In this trial, we will test the feasibility of an integrated palliative care approach starting when the haematologist decides to propose the last active treatment to the patient, according to his/her clinical judgement. We decided to test this criterion because it is able to intercept a wide range of patients'needs. The feasibility of this approach requires that we enrol at least 60 patients and that more than 50% of them be followed by the palliative care team for at least 24 weeks. The trial will include integrated qualitative data analysis; to give essential information on feasibility and acceptability.
Purpose: The transition from active cancer treatment to palliative care often results in a shift in drug risk-benefit assessment which requires the deprescribing of various medications. Deprescribing in palliative cancer patients can benefit patients by reducing their pill burden, decrease potential side effects, and potentially decrease healthcare costs. In addition, a change in patients’ goals of care (GOC) necessitates the alteration of drug therapy which includes both deprescribing and the addition of medications intended to improve quality of life. Depending on a patient’s GOC, a medication can be considered as inappropriate.
Objectives: Primary: Comparison between potentially inappropriate medications (PIMs) prior to the palliative care consult (PCC) versus after the PCC. Secondary: Association between PIMs and GOC.
Methods: The study was a 1-year retrospective database review. The study included cancer patients seen by the PCC team at the University of Alberta Hospital. The OncPal guidelines were used to identify and determine the number of PIMs prior to the PCC and after the PCC.
Results: The reduction in PIMs prior to PCC versus after the PCC was statistically significant (p value < 0.001), demonstrating the PCC has a positive significant impact on deprescribing PIMs. For our secondary outcome, an overall decrease in PIMs was observed with the changes of GOC. The strength of the correlations was low (r < 0.1), and the p value was 0.056.
Conclusion: This study shows the positive impact a PCC has on deprescribing and reveals the importance of using guidelines for deprescribing in palliative cancer patients.
OBJECTIVES: We studied a cohort of cancer patients that underwent curative-intent radiation within the last year of life (LYOL). Given the unexpectedly short survival, we evaluated the proportion with relapsed/refractory disease, determined causes of death, and explored whether treatment intent was associated with aggressiveness of care at the end of life.
MATERIALS AND METHODS: We extracted and linked claims data and radiotherapy records for patients seen at a single academic institution that died between October 1, 2014, and September 30, 2015.
RESULTS: Among 870 cancer patients, 290 were irradiated within the LYOL, of which 287 had treatment intent recorded (101 curative-intent, 186 palliative-intent). The majority of curative-intent patients had hematologic malignancies and/or underwent transplant (44.6%), followed by head and neck (9.9%) and gastrointestinal malignancies (9.9%). Half (n=49; 48.5%) had relapsed/refractory disease at the time of curative-intent radiation, including 13 with metastatic disease. Tumor progression (n=65; 64.4%) was the most common cause of death, followed by treatment-related mortality (n=27; 26.7%), of which transplant/hematologic malignancy patients (n=19) were the majority. Compared with palliative-intent patients, curative-intent patients had significantly higher rates of chemotherapy use within 14 days of death (P=0.04), intensive care unit stay within 30 days of death (P<0.00001), and death in the intensive care unit (P=0.001).
CONCLUSIONS: Cancer patients that receive curative-intent radiation in the LYOL appear to be heterogeneous and receive more aggressive care at the end of life compared with palliative-intent patients. Categorizing radiation as curative in patients with metastatic disease may reflect inappropriate decision-making among physicians. Additional studies are needed to understand how radiation oncologists categorize treatment as curative and whether prognostication models may help discriminate patients undergoing curative-intent radiation that have limited life expectancies.
End-of-life care in the intensive care unit is fraught with complicated psychological responses by patients, families, and staff. Empathic and mindful communication, inclusion of all integral staff in decision-making meetings, and multidimensional support of patients and families can ease the transition away from aggressive life-prolonging to comfort-oriented end of life care. Primary palliative care communication strategies can help clarify goals of care and facilitate transitions. Early integration of specialist palliative care is recommended.
PURPOSE: Among breast cancer subgroups, Luminal A is the subgroup with the best prognosis. We report the case of a young woman presenting with a localized luminal A breast cancer with a suspicious liver lesion on initial positron emission tomography (PET)/computed tomography (CT) scan staging.
CASE DESCRIPTION: A 31-year-old woman presented with localized breast cancer accessible to curative treatment. However, PET/CT staging revealed an increase of focal activity in the liver, suspicious of a secondary malignant localization, changing the care towards palliative intent. Discrepancy between breast cancer luminal A subtype and the liver lesion led to further investigations (contrast ultrasound, magnetic resonance imaging, and biopsy), excluding a malignant process, and were in favor of toxic hepatitis, probably secondary to herbal tea consumption.
CONCLUSIONS: Questioning PET/CT findings in light of the cancer subtype enabled us to rectify the diagnosis and allow this patient to be treated with curative intent.
Background: Cancer affects millions of individuals globally, with a mortality rate of over eight million people annually. Although palliative care is often provided outside of specialist services, many people require, at some point in their illness journey, support from specialist palliative care services, for example, those provided in hospice settings. This transition can be a time of uncertainty and fear, and there is a need for effective interventions to meet the psychological and supportive care needs of people with cancer that cannot be cured. Whilst Acceptance and Commitment Therapy (ACT) has been shown to be effective across diverse health problems, robust evidence for its effectiveness in palliative cancer populations is not extensive.
Method: This mixed-methods study uses a single-case experimental design with embedded qualitative interviews to pilot test a novel intervention for this patient group. Between 14 and 20 patients will be recruited from two hospices in England and Scotland. Participants will receive five face-to-face manualised sessions with a psychological therapist. Sessions are structured around teaching core ACT skills (openness, awareness and engagement) as a way to deal effectively with challenges of transition into specialist palliative care services. Outcome measures include cancer-specific quality of life (primary outcome) and distress (secondary outcome), which are assessed alongside measures of psychological flexibility. Daily diary outcome assessments will be taken for key measures, alongside more detailed weekly self-report, through baseline, intervention and 1-month follow-up phases. After follow-up, participants will be invited to take part in a qualitative interview to understand their experience of taking part and acceptability and perceived effectiveness of the intervention and its components.
Discussion: This study is the first investigation of using ACT with terminally ill patients at the beginning of their transition into palliative treatment. Using in-depth single-case approaches, we will refine and manualise intervention content by the close of the study for use in follow-up research trials. Our long-term goal is then to test the intervention as delivered by non-psychologist specialist palliative care practitioners thus broadening the potential relevance of the approach.
Trial registration: Open Science Framework, 46033. Registered 19 April 2018.
Nous voudrions, dans cet article, partager notre réflexion relative aux mutations que connaissent de nos jours les équipes mobiles intrahospitalières de soins palliatifs en Wallonie (Belgique) et proposer quelques repères d’avenir face aux défis auxquels ces dernières se trouvent confrontées. Après avoir fait un état des lieux, nous proposons un changement de vision. La nomination palliative est une reconnaissance du passage, de la transition du curatif au palliatif. Cette notion de « passage », de « transition » est fondamentale. L’équipe mobile intrahospitalière a un rôle éducatif à jouer dans la réimplantation de la mort, dans les possibilités qu’on a de l’évoquer. Il s’agit de revenir à une dynamique apaisante de la nomination de la mort possible. C’est tout naturellement qu’il est nécessaire d’évoluer vers une représentation circulaire des soins au cœur desquels se trouvent et les soins curatifs et les soins palliatifs, avec une vision plus précoce des soins palliatifs. Nous terminons en pointant les objectifs et missions de l’équipe mobile intrahospitalière, à continuer ou à développer, en précisant ses mandats et en incitant l’institution hospitalière à lui accorder une reconnaissance.
AIM: To describe and explain the process of transition from cure-focused to comfort-focused healthcare as perceived and reported by patients, family members and healthcare providers.
BACKGROUND: Moving into the last phase of life due to advanced illness constitutes a developmental transition with increased vulnerability for patient and family.
DESIGN: Qualitative metasynthesis.
DATA SOURCES: Medline, CINAHL and PsycInfo databases, searched from inception through March 2016. Primary research reports published from 1990 to 2015, using qualitative designs to report transition experiences of patients, family members and/or healthcare providers were included.
REVIEW METHODS: Key elements were extracted and organized into matrices. Findings from each report were analyzed using qualitative coding.
RESULTS: The sample was 56 unique reports from 50 primary studies. Patients and families emphasized the importance of receiving understandable information, emotional support, respect for personhood and control. The critical juncture of 'realizing terminality' preceded a transition to comfort-focused care. Subsequently, a shift in goals of care emphasizing comfort and quality of life could occur. Continued provision of information, effective support, respect and control promoted 'reframing perceptions' and capacity to embrace a changed identity. Reframing allowed patient and family to find meaning and value in this last phase of life and to embrace the opportunity to prepare for death, nurture relationships and focus on quality of living.
CONCLUSION: Understanding the developmental process that can be engaged by patients and families at end of life provides a theoretical basis that can inform choice and timing of interventions to reduce suffering and enhance positive outcomes.
Les questions que nous posons ici prennent leur support et leur sens à partir de cette fonction clinique propre à toute Equipe Mobile de Soins Palliatifs (EMSP) en milieu hospitalier : répondre aux équipes curatives qui demandent le passage de patients en Unités de Soins Palliatifs (USP). Exerçant en Unités de Soins Palliatifs, en Equipe Mobile de Soins Palliatifs et en service de soins aigus, nous vivons la complexité et la spécificité de chaque demande de transfert en Unité de Soins Palliatifs.
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AIMS AND OBJECTIVES: To investigate challenges nurses face when providing care for oncology patients transitioning from curative to palliative care and to identify educational and support opportunities for nurses.
BACKGROUND: Communicating with oncology patients/families transitioning from curative treatments to care focused on comfort can be problematic for a variety of reasons. Research suggests discrepancies exist between physicians' and patients' perceptions of probable length of life. These disconnects can deepen suffering. Oncology and palliative care nurses are well positioned to facilitate this transition. However, they receive little formal instruction regarding these complex scenarios beyond what occurs through on-the-job training.
METHODS: Twenty-eight nurses working in oncology (n = 14) and palliative care (n = 14) settings participated. The constant comparative method was used to analyse the data.
RESULTS: Four themes emerged that characterise oncology and palliative care nurses' experiences: (a) coping with interprofessional communication errors during the transition, (b) responding to patient/family reactions to miscommunication about the goals of care, (c) navigating emotional connection to patients, and (d) adapting to sociocultural factors that influence information exchange.
CONCLUSIONS: This study supports previous research regarding challenges related to patient reactions, family relationships and emotional burden during end-of-life care. However, it adds to the literature by a providing a more in-depth explication of interprofessional and patient-physician communication barriers that negatively impact care.
RELEVANCE TO CLINICAL PRACTICE: Misunderstandings between patients, physicians and nurses have the potential to distress complicate nurses' efforts to support patients and families. Nurses reported a problematic power dynamic that impedes their ability to facilitate communication between patient and physician or to offer insights that could enhance patient care. Medical education and continuing education initiatives are needed to build understanding across professional roles and specialties and to improve comfort discussing worsening prognosis and end-of-life issues.
BACKGROUND: There are limited studies on factors associated with cancer patients' perception of curability.
OBJECTIVE: To examine advanced cancer patient's perception of curability and its association with patient's sociodemographic and clinical characteristics, decisional control preference (DCP), symptoms, and end-of-life quality care outcomes.
DESIGN: Secondary analysis of a study to determine the DCP and illness understanding of advanced cancer patients receiving palliative care (PC).
MEASUREMENTS: Data of the Illness Understanding survey, the Control Preference Scale, and demographics, symptoms, and end-of-life quality care outcomes were reviewed.
RESULTS: Of 121 patients, 104 (86%) were evaluable. Median age was 56 years, 60% were women, and 64% had a Karnofsky performance status =60. Thirty-seven percent inaccurately reported that their cancer was curable. Patients with accurate perception were more likely to choose a passive DCP (20% vs. 2.6%, p = 0.04). An accurate perception of curability was associated with a longer time from advanced cancer diagnosis to PC referral (odds ratio [OR] = 1.04, p = 0.04). There was a trend toward an association between inaccurate perception of curability, male gender (OR = 0.29, p = 0.09), and intensive care unit admission within 30 days of death (OR = 0.26, p = 0.09). No other significant associations between perception of curability and patients' demographics, clinical characteristics, symptoms, or end-of-life quality care outcomes were found.
CONCLUSIONS: Thirty-seven percent of advanced cancer patients receiving PC inaccurately perceived their disease curable. These patients were more likely to have earlier PC referrals. An accurate perception of curability was associated with passive DCP. Further studies are needed to test effective communication strategies to mitigate this misperception.
OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals.
DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature.
DATA SYNTHESIS: We describe three common clinical scenarios when curative or life-prolonging goals of care are pursued despite a high likelihood of death. We explore the challenges to providing high-quality end-of-life care in this setting. We describe possible perspectives of families and ICU clinicians facing these circumstances to aid in our understanding of these complex deaths. Finally, we offer suggestions of how PICU clinicians might improve the care of children at the end of life in this setting.
CONCLUSIONS: Merging curative interventions and optimal end-of-life care is possible, important, and can be enabled when clinicians use creativity, explore possibilities, remain open minded, and maintain flexibility in the provision of critical care medicine. When faced with real and perceived barriers in providing optimal end-of-life care, particularly when curative goals of care are prioritized despite a very poor prognosis, tensions and conflict may arise. Through an intentional exploration of self and others' perspectives, values, and goals, and working toward finding commonality in order to align with each other, conflict in end-of-life care may lessen, allowing the central focus to remain on providing optimal support for the dying child and their family.
OBJECTIVE: Patients suffering from advanced disease face different care transitions. The transition from acute to palliative care is challenging and may lead to the discontinuity of care. Family caregivers become important sources of information, as patients begin to experience difficulties in coping with emotional transition events. The Care Transition Measure was developed to evaluate care transitions as experienced by the elderly. It has never been used in palliative care. The aim of this study was to test the validity and reliability of a modified version of the Palliative Care Transition Measure, specifically the Palliative Care Transition Measure for Caregivers (PCTM-C).
METHOD: The study included two main phases. Phase I focused on the construction of a modified version of the Palliative Care Transition Measure through two focus groups and by computing the content validity index. Phase II focused on testing the psychometric properties of the PCTM-C on 272 family caregivers through confirmatory factor analysis.
Result: The content validity index for each of the items was higher than 0.80, whereas that for the scale was 0.95. The model tested with confirmatory factor analysis fitted the data well and confirmed that the transition measures referred to communication, integrated care and a trusting-relationship, and therefore the core dimensions of continuity according to existing conceptual models. The internal consistency was high (Cronbach's alpha = 0.94).
Significance of results: The PCTM-C proved to be a suitable measure of the quality of such transitions. It may be used in clinical practice as a continuity quality indicator and has the potential to guide interventions to enhance family caregivers' experience of care continuity.
The conflicting tasks of treating or managing disease and preparing patients and their families for the end of life are well documented in haematology and palliative care settings. This article is a reflection on practice by a nursing student who was in the fourth year of an internship, and discusses a case study involving a woman at the end of life. It considers the approach to palliative and end of life care adopted in an oncology and haematology ward where there was a reluctance to be realistic about the limitations of treatments among some healthcare practitioners, who did not want to dispel unrealistic expectations of the patient's recovery as a result of continuing treatment. This reflection focuses on the care of a patient at the end of life and the frustration experienced by the nursing student at their inability to alter the direction of treatment from curative treatment to the palliation of symptoms.
Le progrès des soins, l'évolution des relations soignants/soigné, l'apparition de la pathologie VIH, l'allongement régulier de la durée de vie, nous ont amené à dépasser les barrières symboliques "curatif/palliatif" pour rejoindre la notion du "soin continu".
AIM: Medical consultations focused on managing the transition to palliative care are interpersonally challenging and require high levels of communicative competence. In the context of non-English speaking patients, communication challenges are further complicated due to the requirement of interpreting; a process with the potential to add intense layers of complexity in the clinical encounter, such as misunderstanding, misrepresentation and power imbalances. The aim of the study was to explore the experiences and perspectives of professional interpreters in supporting the transition of culturally and linguistically diverse patients to specialist palliative care.
METHODS: Qualitative, semistructured interviews with 20 professional interpreters working in oncology and palliative care settings in two metropolitan hospitals in Queensland, Australia.
RESULTS: Four key themes emerged from the thematic analysis: the challenges of translating the meaning of "palliative care"; managing interpreting in the presence of family care-givers; communicating and expressing sensitivity while remaining professional and interpreters' own emotional burden of difficult clinic encounters between doctor and patient negotiations.
CONCLUSION: The results suggest that interpreters face a range of often concealed interpersonal and interprofessional challenges and recognition of such dynamics will help provide necessary support for these key stakeholders in the transition to palliative care. Enriched understanding of interpreters' experiences has clinical implications on improving how health professionals interact and work with interpreters in this sensitive setting.
Introduction: This study aimed to explore the feasibility of an individualized comprehensive lifestyle intervention in cancer patients undergoing curative or palliative chemotherapy.
Material and methods: At one cancer center, serving a population of 180,000, 100 consecutive of 161 eligible newly diagnosed cancer patients starting curative or palliative chemotherapy entered a 12-month comprehensive, individualized lifestyle intervention. Participants received a grouped startup course and monthly counseling, based on self-reported and electronically evaluated lifestyle behaviors. Patients with completed baseline and end of study measurements are included in the final analyses. Patients who did not complete end of study measurements are defined as dropouts.
Results: More completers (n = 61) vs. dropouts (n = 39) were married or living together (87 vs. 69%, p = .031), and significantly higher baseline physical activity levels (960 vs. 489 min.wk-1, p = .010), more healthy dietary choices (14 vs 11 points, p = .038) and fewer smokers (8 vs. 23%, p = .036) were observed among completers vs. dropouts. Logistic regression revealed younger (odds ratios (OR): 0.95, 95% confidence interval (CI): 0.91, 0.99) and more patients diagnosed with breast cancer vs. more severe cancer types (OR: 0.16, 95% CI: 0.04, 0.56) among completers vs. dropouts. Improvements were observed in completers healthy (37%, p < 0.001) and unhealthy dietary habits (23%, p = .002), and distress (94%, p < .001). No significant reductions were observed in physical activity levels. Patients treated with palliative intent did not reduce their physical activity levels while healthy dietary habits (38%, p = 0.021) and distress (104%, p = 0.012) was improved.
Discussion: Favorable and possibly clinical relevant lifestyle changes were observed in cancer patients undergoing curative or palliative chemotherapy after a 12-month comprehensive and individualized lifestyle intervention. Palliative patients were able to participate and to improve their lifestyle behaviors.