Palliative Context Research Articles

Working bi-culturally within a palliative care research context: the development of the Te Ārai Palliative Care and End of Life Research Group

It is increasingly recognised that palliative care research needs to pay more attention to culture if the diverse needs of service users are to be appropriately met. However, in most countries research, practice and policy in palliative care remains predicated upon a specific cultural understanding of the ‘good death’, firmly rooted in a Western world view. In this paper we present the formation of a new multi-disciplinary palliative care research group, explicitly set up along bi-cultural lines – The Te Ārai Palliative Care and End of Life Research Group to face challenges of traditional paradigms of palliative care in the specific context of Aotearoa New Zealand (NZ). We outline the rationale for establishing a research group which meets both Māori (indigenous people of NZ) and conventional Western standards for conducting academic research, describe our bi-cultural framework, and provide examples of how it shaped the design of three recently completed projects. We also situate our experience within the wider international literature, identifying transferable lessons for researchers wanting to do palliative care research with indigenous and minority ethnic and cultural groups.

Abstract 4263: Establishment and initial characterization of human hepatocellular carcinoma organoid culture

Abstract Background: Hepatocellular carcinoma (HCC) is the 3rd most leading cause of cancer death in the world. Despite extensive research, HCC has a strikingly bad prognosis due to the limited therapeutic options: Other than surgical resection, there is no curative treatment. No cytotoxic agent has shown efficacy so far, and the only currently approved systemic agent, sorafenib, is only used in a palliative context. This dilemma is due to the therapy-resistant biology as well as its variable pathogenesis and biological diversity, which requires excellent preclinical models to allow differential and innovative studies. Innovative 3D culture methods such as organoid culture have been increasingly implemented in routine in vitro research for many tumor entities. However, due to its distinct biology, organoid culture of HCC has been a challenge. We here describe the initial establishment and characterization of HCC organoid culture. Materials/Methods: Surgical HCC tissue specimens were obtained in the operating rooms of the University Hospital Dresden; biopsy specimens were obtained via CT-/ultrasound-guided biopsy of HCC lesions. All samples were processed according to a novel protocol and cultured in Matrigel supplemented with a highly specialized culture medium. Organoids were propagated, passaged and frozen at regular intervals. Proliferation was measured using a modified WST proliferation assay protocol. Next-generation sequencing (NGS) was performed on corresponding triplets of healthy tissue, tumor tissue and organoid samples using the TruSight One Sequencing Panel (Illumina) on an Illumina MiSeq Sequencer. Histology was performed on formalin-fixed and paraffin-embedded organoids using standard protocols. Results: We were able to establish a method to culture HCC samples as organoids in vitro. Proliferation assays revealed distinct differences in organoid growth of HCCs from different patients and correlated well with both clinical behavior and histological grading of the tumors. Amplicon sequencing (targeting 4,813 cancer-associated genes) of corresponding sets of tumor specimens and HCC organoids demonstrated the HCC origin of the organoids and their genetic and genomic stability in culture. Treatment of HCC organoids with sorafenib showed the expected reduction in proliferation and viability. Interestingly, treatment of the HCC organoids with hepatocyte growth factor (HGF) resulted in a marked reduction in proliferation as opposed to healthy liver organoids, which had increased proliferation activity upon stimulation with HGF. Histology of the HCC organoids showed distinct features of HCC and corresponded well with the corresponding HCC tissue samples. Conclusion: We successfully established a protocol reliably allowing 3D organoid culture of HCC. The organoids faithfully recapitulate the biology of the corresponding tumor and can be used for multiple purposes including in vitro therapeutic testing. Citation Format: Sebastian Schölch, Lahiri K. Nanduri, Daniel Kühn, Jürgen Weitz, Moritz Koch, Nuh N. Rahbari. Establishment and initial characterization of human hepatocellular carcinoma organoid culture. [abstract]. In: Proceedings of the 107th Annual Meeting of the American Association for Cancer Research; 2016 Apr 16-20; New Orleans, LA. Philadelphia (PA): AACR; Cancer Res 2016;76(14 Suppl):Abstract nr 4263.

Prosocial behaviour in palliative nurses: psychometric evaluation of the prosociality scale.

The aim of this study was to examine the psychometric properties of a prosociality scale within the palliative nursing context, and then examine the impact of prosocial behaviour in relation to job and educational satisfaction among palliative nurses. An online cross-sectional survey was conducted in 25 Italian palliative care centres, with a total of 107 nurses completing the prosociality scale by Caprara et al (2005) . Exploratory and confirmatory factor analyses were examined to evaluate a multidimensional model of prosociality. A three-factor solution with a second order factor fitted the data well. The three dimensions extracted were labelled as helping, empathy, and sharing. Participants reported high levels of prosociality. In addition, prosociality was positively associated with job and educational satisfaction. The prosociality scale was valid and reliable when tested with palliative nurses. Although prosociality may be embedded in nurses' personalities, this quality should be actively promoted to expand and improve the culture and the ethics of nursing.

The correlation of attitude towards dying and used methods in the work of music therapists in palliative contexts

Background: Music therapy in Germany becomes more and more part of Palliative Care. But as there is no specific training; the music therapists working in this area develop individual theories about how their work contexts and methodology should be.Objective: Objective of my PhD – which is in work – is to find out, if, and if yes how the attitude towards death in general and their own experiences with dying and mourning in their personal and professional environment influences the work of music therapists especially concerning the methods/kind of interventions they use.Methods: For my study I combine qualitative and quantitative data analysis (mixed methods research) using qualitative interviews and a standardized (FIMEST) as well as a self-developed questionnaire.Discussion: The discussion is about how different kinds of interventions may correlate to attitudes and how attitudes may be further developed in a social environment that usually does not consider the encounter with death as an instrument of lea...

Toward Safer Transitions: A Curriculum to Teach and Assess Hospital-to-Hospice Handoffs

ContextPatient handoffs are an increasingly emphasized skill in medical and nursing education, and handoff education is required by the Accreditation Council for Graduate Medical Education. Traditional handoff tools lack content that is unique to hospice and palliative medicine. ObjectivesThe objective of the study was to develop a comprehensive curriculum to teach and assess patient handoffs in hospice and palliative medicine fellowships. MethodsEight hospice physicians, nurse practitioners, and nurses were interviewed to determine core content for a hospital-to-hospice handoff. This content was used to create a verbal handoff template and direct observation assessment tool, which were reviewed by the same hospice providers for content validity. The handoff template was taught to two groups of palliative medicine fellows and one group of internal medicine residents using an interactive didactic and role play, and feedback was obtained to further refine the curriculum. ResultsAfter refinement, the complete handoff curriculum (verbal handoff template, didactic with role play, assessment by faculty using direct observation tool) was successfully integrated into a hospice and palliative medicine fellowship, satisfying Accreditation Council for Graduate Medical Education requirements related to transitions in care. ConclusionThe hospital-to-hospice handoff is a unique opportunity to teach patient safety in a palliative medicine context.

Art therapy among palliative cancer patients: Aesthetic dimensions and impacts on symptoms

This study aimed to explore whether aesthetic beauty and the pleasure that results from artistic activity can contribute to a reduction in the symptoms experienced by palliative care patients, and to improve the effectiveness of art therapy sessions. A self-assessment of six symptoms (pain, anxiety, ill-being, tiredness, sadness, and depression) adapted from the Edmonton Symptom Assessment System (ESAS) was completed by patients before and after a one-hour art therapy session. This assessment was completed after the session with a self-assessment of aesthetic feeling. A correlation analysis was then performed. From July of 2012 to December of 2013, 28 patients took part in 63 art therapy sessions. On the whole, these sessions reduced the global distress of patients by 47% (p < 0.0001). There was a significant reduction in all the symptoms studied; pain (p = 0.003), anxiety (p < 0.0001), ill-being (p < 0.0001), tiredness (p < 0.0001), sadness (p < 0.0001), and depression (p < 0.0001). A study of the significant correlations (0.35 < rs < 0.52, p < 0.05) indicated that technical satisfaction, aesthetic beauty, and pleasure are all involved to varying degrees in reduction of symptoms. Our findings confirm the benefits of art therapy in reducing distress within the palliative context. We also make suggestions for the future direction and improvement of these sessions.

Joint Assignment, Scheduling, and Routing Models to Home Care Optimization: A Pattern-Based Approach

The design of efficient home care services is a quite recent and challenging field of study. We propose an integrated approach that jointly addresses: (i) the assignment of operators to patients so as to guarantee the compatibility between skills associated with operators and patient visits; (ii) the scheduling of the visits in a given planning horizon; and (iii) the determination of the operator tours in every day of the planning horizon. The main home care problem we investigate refers to providers dedicated to palliative care and terminal patients. In this context, balancing objective functions are particularly relevant. Therefore, two balancing functions are studied, i.e., maxmin, which maximizes the minimum operator utilization factor, and minmax, which minimizes the maximum operator utilization factor. In both cases, the concept of pattern is introduced as a key tool to jointly address assignment, scheduling, and routing decisions, where a pattern specifies a possible schedule for skilled visits. The approach we propose is, however, able to cope with peculiarities from other home care contexts. Model extensions to handle scenarios other than the palliative one are discussed in the paper. Extensive computational results are reported both on palliative home care instances based on real data, and on two real-world data sets from the literature, related to contexts very different from the palliative one. For both data sets the proposed approach is able to find solutions of good quality. In the palliative context, the results show that the selection of the pattern generation policy is crucial to solve large instances efficiently. Furthermore, the maxmin criterion is able to return more balanced solutions; i.e., the difference between the maximum and the minimum operator utilization factors is very small. On the other hand, the minmax criterion is more suitable for minimizing the operating costs, since it computes solutions with smaller total traveled time.

Team-based education in a palliative approach for rural nurses and unlicensed care providers.

This article describes the preparation and delivery of an educational intervention designed to improve rural nurses and unlicensed care providers' confidence in a palliative approach to care. A palliative approach takes the principles of supportive palliative care and adapts them for application earlier in nonspecialized palliative contexts for individuals living with life-limiting chronic illness. Curriculum in a palliative approach was constructed for nurses and unlicensed care providers (care aides and home health workers) and was delivered through a workshop and monthly follow-up sessions offered through distance technology. Participants valued the joint interactive education and came away with greater appreciation for one another's contributions to care. Insights were gained into common challenges when attempting to apply a palliative approach in rural areas. Important lessons were learned about educating nurses and unlicensed care providers together, about the use of technology for this group, and about teaching the concept of a palliative approach.

Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention.

BackgroundFew data on services for people with severe multiple sclerosis (MS) are available. The Palliative Network for Severely Affected Adults with MS in Italy (PeNSAMI) developed a home palliative care program for MS patients and carers, preceded by a literature review and qualitative study (here reported).ObjectiveTo identify unmet needs of people with severe MS living at home by qualitative research involving key stakeholders, and theorize broad areas of intervention to meet those needs.MethodData were collected from: at least 10 personal interviews with adults with severe MS (primary/secondary progressive, EDSS≥8.0); three focus group meetings (FGs) of carers of people with severe MS; and two FGs of health professionals (HPs). Grounded theory guided the analysis of interview and FG transcripts, from which the areas of intervention were theorized.ResultsBetween October 2012 and May 2013, 22 MS patients, 30 carers and 18 HPs participated. Forty-eight needs themes were identified, grouped into 14 categories and four domains. Seven, highly interdependent intervention areas were theorized. Patients had difficulties expressing needs; experiences of burden and loneliness were prominent, chiefly in dysfunctional, less affluent families, and among parent carers. Needs differed across Italy with requirements for information and access to services highest in the South. All participants voiced a strong need for qualified personnel and care coordination in day-to-day home care. Personal hygiene emerged as crucial, as did the need for a supportive network and preservation of patient/carer roles within family and community.ConclusionsUnmet needs transcended medical issues and embraced organizational and psychosocial themes, as well as health policies. The high interdependence of the seven intervention areas theorized is in line with the multifaceted approach of palliative care. At variance with typical palliative contexts, coping with disability rather than end-of-life was a major concern of patients and carers.

Irradiation treatment of metastatic tumors and lymphomas

AbstractIntraocular metastases are usually uveal, secondary to breast or lung carcinoma. Lymphoma is most frequently vitreoretinal, in a context of primary central nervous system lymphoma, while a uveal location points towards systemic lymphoma. Management is influenced by a palliative context and bilateral ocular involvement. Close collaboration with the oncologist is required as to the histopathology of the primary tumor, its global extent, oncologic treatment strategy and life expectancy. Stereotactic irradiation is often the principal ocular treatment. A circumscribed treatment of individual lesions carries the risk of local recurrences. The hemato‐ocular barrier often prevents chemotherapy from being effective within the uvea. Radiotherapy usually allows a quick reattachment of the retina and preservation of vision. Evolution towards a painful globe and enucleation should be avoided. With the increasing life expectancy of oncologic patients, treatment of ischemic retina with anti‐VEGFs and PRP becomes more indicated. Conclusion: Irradiation of intraocular metastases and lymphomas is the most important tool in preserving vision and the eye(s). Its indication should be made within a global oncologic treatment strategy.

Les récidives des tumeurs des voies aérodigestives supérieures

Recurrences of tumours of the upper aerodigestive tract are frequent despite the improvement of the primary treatment and they limit the rate of survival long-term. They occur in patients with multiple co-morbidities, often associated with sequelae or side effects of earlier treatments. The salvage treatment will add a cumulative toxicity and therapeutic options are limited. The choice will go from curator to palliative treatment. The report benefit-risk must be assessed in each case depending on the terrain and prognostic factors that have been identified, such as performance status, the time between initial disease and the recurrence, the site and the stratification of the recurrence. In operable non-metastatic recurrence surgery remains the treatment of choice. Multimodal treatment involving surgery, radiation therapy and chemotherapy in this context is being evaluated. Non-operable tumors have long been considered only in a palliative context. The evaluation of detailed irradiation as bifractionnated radiotherapy combined with chemotherapy helped establish protocols allowing long-term survivals and consider these treatments as potentially curators. However, the toxicity of these treatments is important. That is why the technical innovations of the radiation and the development of new chemotherapeutic agents today offer opportunities remaining to assess. The use of irradiation targeted by intensity-modulated radiation therapy (IMRT), and stereotactic radiotherapy by decreasing the irradiated volume should decrease the toxicity. Generally better tolerated than conventional chemotherapy agents, targeted therapies also took their places associated with radiotherapy in the treatment of these patients already treated. Cetuximab was the first agent obtaining an indication. Other agents are being evaluated in metastatic recurrent tumors, including exploring the possibilities of radiopotentialisation nanoparticles and the inhibitors of apoptosis proteins.

Meanings and experiential outcomes of bodily care in a specialist palliative context.

The objective of this study was to enhance the depth of existing knowledge about meanings and experiential outcomes of bodily care in the context of an inpatient specialist palliative setting. Interpretative phenomenology was chosen as the study sought to explore individuals' lived experiences related to bodily care. Nine participants (five women, four men) of various ages and with various metastasized cancers and bodily-care needs, all from one specialist palliative care ward, participated. Data were collected with repeated narrative interviews and supplementary participating observations. Analysis was informed by van Manen's approach. The following meanings and experiential outcomes of bodily care were revealed by our study: maintaining and losing body capability, breaching borders of bodily integrity, being comforted and relieved in bodily-care situations, and being left in distress with unmet needs. These meanings overlap and shape the nature of each other and involve comforting and distressing experiences related to what can be described as conditional dimensions: the particular situation, one's own experiences of the body, and healthcare professionals' approaches. The results, based on specialist palliative care patients' experiences, outline the meanings and outcomes that relate to the quintessence and complexity of palliative care, deriving from dying persons' blend of both basic and symptom-oriented bodily-care needs. Moreover, the results outline how these two dimensions of care equally influence whether comfort and well-being are facilitated or not. Considering this, specialist palliative care may consider how to best integrate and acknowledge the value of skilled basic nursing care as part of and complementary to expertise in symptom relief during the trajectories of illness and dying.

A pre‐operative nomogram for decision making in oncological surgical emergencies

The purpose of the study was to propose a clinical decision-making tool for predicting mortality in patients undergoing emergency abdominal surgery with a palliative intent in the oncology setting. Identification of all emergency surgical procedures performed in a Department of Oncologic Surgery in a Comprehensive Cancer Center between January 2008 and January 2013. Multivariate logistic and Cox regression models were used to identify factors predicitve of mortality at 3 months and survival probabilities. Models were internally validated using bootstrapping and calibration. The mortality rates were 30% at 1 month, 46.7% at 3 months and 83.3% at the end of the study. One model based on the albumin level and the P-POSSUM score (AUC: 0.725) adequately predicted mortality at 3 months. A survival nomogram predicted mortality with a concordance index (CI) of 0.718, using the following factors: WHO performance status (P = 0.02), albumin level (P < 0.01) and P-POSSUM score (P < 0.01). The origin or the extent of the carcinoma did not own sufficient pronostic impact to be selected in this model. Pre-operative mortality risk scores can be developed in a palliative context. Physicians counselling and surgical decision making should be based on the use of these tools.

Healthcare workers knowledge and attitude toward palliative care in an emerging tertiary centre in South-west Nigeria.

Background:Palliative care is an emerging area of medicine with potential to affect positively many chronically ill patients. This study investigated the knowledge and attitude of healthcare workers in a tertiary level hospital in Nigeria where a palliative care unit is being established.Material and Methods:The study was a cross-sectional questionnaire-based study carried out among healthcare workers in Ekiti State University Teaching Hospital, Ado-Ekiti, south-west Nigeria. The questionnaire had sections about definition of palliative care, its philosophy, communication issues, medications, and contexts about its practice. The information obtained from the questionnaire was coded, entered, and analyzed using IBM SPSS version 19.Results:A total of 170 questionnaires were returned within the stipulated time frame with response rate of 66.7%. Majority, (135, 86%) respondents felt palliative care was about the active management of the dying while 70.5% of respondents equated palliative care to pain management. Regarding the philosophy of palliative care, 70 (57.9%) thought that it affirms life while 116 (78.4%) felt palliative care recognizes dying as a normal process. One hundred and twenty-two (78.7%) respondents were of the opinion that all dying patients would require palliative care. The patient should be told about the prognosis according to 122 (83%) respondents and not doing so could lead to lack of trust (85%). Regarding the area of opioid use in palliative care, 76% of respondents agreed that morphine improves the quality of life of patients.Conclusion:There are plausible gaps in the knowledge of the healthcare workers in the area of palliative care. Interventions are needed to improve their capacity.

Attachment Theory and Spirituality: Two Threads Converging in Palliative Care?

The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient's needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person's attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one's own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.

Komplementärtherapie in der Palliativmedizin

Even in the palliative context complementary therapy has a high value for patients and their relatives. In contrast to the methods of conventional medicine naturopathy as a holistic system has positive meanings for patients and their family. Complementary medicine in the palliative setting can be used as a supportive therapy in carefully selected cases. Doctors and patients should be careful regarding effect and side effects and should make sure that supportive therapy is given adequately and in effective doses. Complementary therapy should not be used in order to avoid the question of life and death. An adequate approach to the topic is mandatory, which acknowledges the needs of patients but also looks for their safety. Patients following alternative therapies sometimes neglect helpful therapeutic options. Carefully providing information on these therapies is mandatory. Physicians should avoid losing patients' confidence in their competence and attention in their final course of disease. Also in palliative medicine a sensitive approach to the topic of complementary medicine is mandatory, which accounts for the eligible wishes of patients and their relatives but puts the patients safety first.

The spirit of palliative practice: A qualitative inquiry into the spiritual journey of palliative care physicians

Much is known about the important role of spirituality in the delivery of multidimensional care for patients at the end of life. Establishing a strong physician-patient relationship in a palliative context requires physicians to have the self-awareness essential to establishing shared meaning and relationships with their patients. However, little is known about this phenomenon and therefore, this study seeks a greater understanding of physician spirituality and how caring for the terminally ill influences this inner aspect. A qualitative descriptive study was used involving face-to-face interviews with six practicing palliative care physicians. Conceptualized as a separate entity from religion, spirituality was described by participants as a notion relating to meaning, personal discovery, self-reflection, support, connectedness, and guidance. Spirituality and the delivery of care for the terminally ill appeared to be interrelated in a dynamic relationship where a physician's spiritual growth occurred as a result of patient interaction and that spiritual growth, in turn, was essential for providing compassionate care for the palliative patient. Spirituality also served as an influential force for physicians to engage in self-care practices. With spirituality as a pervasive force not only in the lives of palliative care patients, but also in those of healthcare providers, it may prove to be beneficial to use this information to guide future practice in training and education for palliative physicians in both the spiritual care of patients and in practitioner self care.

General practice, clinical intention and the Sexual Offences Act 2003.

General practitioners must be capable of regularly taking 'ultimate' responsibility for difficult decisions in situations of clinical complexity and uncertainty. The Sexual Offences Act 2003 criminalises all sexual activity with a child under the age of 16. However, those who act with the purpose of protecting a child from a sexually transmitted infection, protecting the physical safety of a child, preventing the child from becoming pregnant or promoting the child's emotional well-being by the giving of advice will not commit an offence. Medicolegal academic writers have compared the legal separation of intention and foreseeability with the special defence of double-effect used in the palliative care context. This paper seeks to draw upon legal principles in constructing an ethical framework for analysis of this issue. It is hoped that this case study will stimulate further discussion, clarify the moral reasoning underpinning the existing guidelines for GPs and how the doctrine or principle of double effect can be used outside the palliative medicine context.

Hope in palliative care: An integrative review

The objective of this review is to describe the current status of research on hope in palliative care. Integrative review was conducted to determine current knowledge on the topic. CINAHL and PubMed MEDLINE databases were used to find the articles relevant to this review. The data consisted of 34 articles on hope and palliative care published in peer-reviewed journals. A qualitative approach utilizing content analysis was used in this review. There are at least two overarching themes of patients' hope in the palliative context: "living with hope" and "hoping for something" which however are not separate contents. Several instruments for measuring hope in a palliative context have been produced. However, future research is needed to gather further validity evidence for these instruments. Factors related to patients, other people (e. g. significant others), illness, care and context contribute to or threaten patient hope. Hope of the significant other was defined as an inner force. However, the main concern for caregivers was "hanging on to hope" in spite of eroding effects on hope caused by different factors, for example in the health care system. Also significant others' hope in a palliative care context has been measured, but the results of the studies appear inconsistent. Nurses' reflection in action, affirmation of the patient's worth, working with the patient, considering the patient in a holistic sense were the main hope-engendering interventions generated from this review. Hope is important in both living and dying. The majority of the hope research in a palliative context focuses on patient hope and factors influencing patient hope. Research on hope in significant others and nurses in palliative care is scant. More research is needed about the factors threatening patient hope, hope in significant others, and interventions to engender hope in palliative and their outcomes.

Competing discourses in palliative care

Palliative care focuses on early identification as well as prevention and alleviation of suffering. Previous studies have established that palliative care is a disciplinary area in a state of transformation due to the involvement of different professional categories and that nursing care in the palliative context is influenced by the dominance of the medical perspective. This study aimed to describe palliative care from a nursing perspective prior to the implementation of a palliative care programme. The approach was inspired by the ethnographic method and a constructionist perspective was used as a theoretical framework, as the focus was on existing palliative care discourses. Field studies were conducted on a ward where palliative care was provided to patients at the end of life. Approval for the study was granted by the Ethics Committee at Sahlgrenska Academy. Data were collected by means of participant field studies, informal deliberations and other relevant documents. Four different discourses were discerned: caring, non-caring, curing and the organisation. The ethos on the ward was strongly linked to the medical discourse. We consider that a prerequisite for the organisation of palliative care is an expressed caring perspective based on the patients' experiences of suffering, which perspective is lacking in the curing and organisational discourses.