"Melanoma is one of the most common types of malignancy in the world, and one known to carry a very poor prognosis until recent years. This review aims to outline the events in the history of the disease and the impact made by the discoveries along the way, as well as the modern-day consensus by referencing the updated literature regarding the present approach and future directions. In the last two decades, several studies and research have brought significant improvement in the diagnosis and clinical management of melanomas. The development of sentinel lymph node biopsy has brought major changes to the surgical approach to the disease, and modern therapies based on recently developed knowledge changed the death sentence this diagnosis once meant to a manageable condition despite its aggressiveness, keeping in mind that early diagnosis and safe margin excision remain the best and most optimistic course of treatment. "
Background: The Palliative Care Consult Service (PCCS) programme was among the first initiations in Hungary to provide palliative care for patients admitted to hospital. The PCCS team provides palliative care for mainly cancer patients and their family members and manages the patient pathway after being discharged from the hospital. The service started in 2014 with 300-400 patient visits per year. The aim of this study is to give a comprehensive overview of the PCCS programme guided by a conceptual framework designed by SELFIE ('Sustainable intEgrated chronic care modeLs for multi-morbidity: delivery, FInancing, and performancE'), a Horizon2020 funded EU project and to identify the facilitators and barriers to its wider implementation. Methods: PCCS has been selected by the SELFIE consortium for in-depth evaluation as one of the Hungarian integrated care models for persons with multi-morbidity. The qualitative analysis of the PCCS programme was based on available documents of the care provider and interviews with different stakeholders related to the programme. Results: The integrated, multidisciplinary and patient-centred approach was well-received among the patients, family members and clinical departments, as verified by the increasing number of requests for consultations. As a result of the patient pathway management across providers (e.g. from inpatient care to homecare) a higher level of coordination could be achieved in the continuity of care for seriously-ill patients. The regulatory framework has only partially been established, policies to integrate care across organizations and sectors and adequate financial mechanism to support the enhancement and sustainability of the PCCS are still missing. Conclusions: The service integration of palliative care could be implemented successfully in an academic hospital in Hungary. However, the continuation and enhancement of the programme will require further evidence on the performance of the integrated model of palliative care and a more systematic approach particularly regarding the evaluation, financing and implementation process.
Background: a wide range of palliative care services has been implemented in Catalonia over the past 20 years. Quantitative and qualitative differences in the organization of palliative care services between districts and settings can result in wide variability in the quality of these services, and their accessibility. Methods: we implemented a benchmark methodology to compare dimensions of care and organization, to identify aspects requiring improvement, and to establish indicators to measure progress. The overall aim was to generate a consensus document for submission to the Department of Health (DoH) of the Government of Catalonia. Results: a Steering Committee convoked a meeting in Barcelona (Catalonia, Spain) and representatives (n = 114) of all the 37 districts within our health care remit (rural, urban, intermediate, and metropolitan) and settings of the health care system (hospitals, social health centers, community, and nursing homes) attended and took part in plenary sessions and workshops to define areas that, in their experience, were considered weak. Twenty-one consensus recommendations achieving high levels of consensus were generated for submission to the DoH. These included the formal definition of the model of care and organization of palliative care services at all levels in the region, the implementation of measures for improvement in different settings and scenarios, systems for continuous care, and facilities for the continuing training of health care personnel. These proposals have since been implemented in a trial region and, depending on the outcomes, will be applied throughout our health service. Conclusion: we conclude that benchmark methodology is valuable in acquiring data for use in improving palliative care organization for patients' benefit.
People have been thinking, writing and proposing legislation about euthanasia for decades. Arguments from either side have been weighted with moral, religious, ethical, social, human and scientific issues. We too debate euthanasia, propose laws which seek to protect that which is sacred to us; life itself, dignity, control, faith, religion, pulling the favours towards and against its use. ; N/A
Protecting and promoting patients' and families' sense of dignity at end-of-life is an indispensable goal, one that palliative care professionals have pursued unceasingly in the modern era. While researchers have made several attempts to uncover the intricate meaning and constitution of dignity and dignified end-of-life care in recent years, their works are solely based upon a Western individualistic paradigm that may not be applicable in Eastern collective societies. This limitation underscores that the existing body of knowledge is missing an important articulation on the Chinese experience. Thus, to fill this important knowledge gap, this study has applied 'micro', 'meso' and 'macro' levels of inquiries to attain a holistic understanding of dignity and dignified end-of-life care in the Hong Kong Chinese context. Through meaning-oriented interviews with 18 Chinese palliative terminal cancer patients and 18 of their family caregivers, as well as four interpretive-systemic focus groups with 30 key informants involved in a novel end-of-life care pathway programme (N=66), a total of 31 themes that elucidate dignity and dignified end-of-life care have been generated. These 31 themes are carefully organized into 9 categories that reflect the Individual, Familial and Institutional dimensions of dignity at end-of-life. First, the Individual dimension includes: 1) "Personal Autonomy", which consists of Regain Control, Self-Sufficiency, Informed Care Decisions and Future Planning; 2) "Family Connectedness", which consists of Express Appreciation, Achieve Reconciliation, Fulfill Family Obligations and Strengthen Family Bond; and 3) "Spiritual Plasticity", which consists of Enduring pain, Spiritual Surrender, Moral Transcendence and Transgenerational Unity. Second, the Familial dimension involves: 1) "Social Agency", which comprises of Caregiving Resources, Caregiver Assertiveness and Communicative Action; 2) "Family Integrity", which comprises of Mutual Support, Kinship Involvement and Family Adaptability; and 3) "Filial Compassion", which comprises of Compassionate Duty, Reciprocal Relationship and Emotional Connection. Third, the Institutional dimension entails: 1) "Regulatory Empowerment", which encompasses Interdisciplinary Teamwork, Resource Allocation, Culture Building and Collaborative Policymaking; 2) "Family-Centered Care", which encompasses Continuity of Care, Family Conference and Care Partnership; and 3) "Collective Compassion", which encompasses Devotion in Care, Empathic Understanding, and Compassionate Action. These 9 categories and their respected 31 themes are clearly interrelated and embedded within the political, cultural, and spiritual contexts of society, highlighting the intricate interplay of systemic structure and social discourse for promoting dignity at end-of-life. These findings have further led to the development of the 'Patient-Family Model of Dignified Care' and the 'Interpretive-Systemic Framework of Dignity at End-of-Life'. The former provides a new clinical protocol for identifying and evaluating the strengths and weaknesses within the personal, interpersonal and transpersonal functioning of the patient-family dyads in Chinese end-of-life care. The latter offers a public health roadmap for social change that accentuates the necessity for a collective consciousness of compassion in pushing forth the ultimate ideal of living and dying with dignity in Hong Kong. Based on this body of work, recommendations for patient-family care at end-of-life, expansion of community-based palliative care, and development of palliative long-term-care for ensuring quality and equality in the care of dying patients and their families are discussed. ; published_or_final_version ; Social Work and Social Administration ; Doctoral ; Doctor of Philosophy
The Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional collaborators identified the need to disseminate country-specific study results locally and provide policy recommendations to inform stakeholders. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment report was developed with Eurasian and St Jude pediatric palliative care and oncology experts to summarize study findings and deliver country-level data to local stakeholders. In parallel, an assessment was developed to explore how regional collaborators intend to use the report to improve local advocacy and dissemination of research findings. The country report and assessment were translated to English, Russian, and Mongolian. RESULTS: Country-specific two-page reports display study findings on pediatric palliative care education, access to pediatric palliative care services, and barriers to and timing of integration with cancer care, alongside clinical and policy recommendations. These reports were distributed to collaborators in 11 countries. Assessment results (N = 30) demonstrated that regional collaborators planned to distribute the report to institutional and government stakeholders, aiming to increase access to pediatric palliative care services (77%), establish a community-based palliative care network (70%), and increase opportunities for specialization (70%). CONCLUSION: We describe the development of an evidence-based advocacy tool to inform local health and education policy in Eurasia. This summary report of study findings, translated to local languages and adapted to a broader audience, is currently used to advocate for greater access and quality of palliative care for children with cancer. This work may serve as the basis for future dissemination efforts of scientific research.
Modern medicine is divided into three categories, namely preventive, curative and palliative. Palliative medicine and palliative care focus on people suffering from progressive incurable diseases with an expected fatal outcome, as well as their family members. It is conducted by an interdisciplinary palliative team at all levels of health care. Palliative care is a broader term than palliative medicine, as it encompasses other activities carried out by social welfare institutions as well as civil society organizations, religious institutions and other stakeholders in the community. Although elements of the palliative approach have been encountered throughout history since the beginning of medical treatment, in the last fifty years we have witnessed the rapid development of palliative medicine as a distinct specialization and subspecialisation in many countries around the world. Palliative care is a civilizational step forward and a true example of person-centered medicine. Given the aging population and the growing technological capabilities of modern medicine, we expect a large increase in the need for palliative care which requires the active contribution of all participants involved in creating and implementing social and health policies, both locally, nationally and internationally. This paper presents the historical development and current state of palliative medicine in the world with special emphasis on the situation in Croatia. Key words: palliative medicine, palliative care, palliative team, quality of life, strategic plans, person-centered medicine, total pain, education
There is an increased risk of debilitating illnesses that often have no curative treatment with aging. The mainstay of treatment in many such conditions is palliative care: a holistic approach focused on preventing and relieving physical, psychosocial, legal, ethical, and spiritual problems. It involves the facilitation of end-of-life care decisions aimed at relieving distress and improving quality of life. In this article, the authors discuss the role of mental health professionals in legal issues related to palliative care in the elderly around decision-making, right to autonomy, euthanasia, and advanced directive. The cognitive decline associated with aging and mental health issues in the palliative care setting of an individual such as dementia, depression, and hopelessness, and impact on the family members like burnout may influence the overall capacity of that individual to make decisions about their treatment. While an individual has a right to self-determination and autonomy, withholding or withdrawing treatment has many legal and ethical implications, more so in those with incapacity, especially in India due to the absence of uniform legislation. The decision to withhold or withdraw treatment might be a restrictive choice due to limited options in a setting with a lack of palliative care options, poor psychosocial support, nonaddress of mental health issues, and lack of awareness. As the right to health is a constitutional right, and the right to mental health is legally binding under Section 18 of the Mental Health Care Act 2017, systematic efforts should be made to scale up services and reach out to those in need.
Background: Beck Hopelessness Scale (BHS) has been translated and validated in many languages. Aim: The validation of the English version of BHS in advanced cancer patients receiving palliative treatment in Greece. Methods: The final sample was 112 advanced cancer patients. Internal consistency, item-total correlations, and test—retest using four different approaches were calculated for the assessment of the reliability. Construct validity was used by examining correlations between BHS, Hospital Anxiety and Depression Scale (HAD-Depression) and the Schedule of Attitudes toward Hastened Death (SAHD). Known-groups validity was also assessed by detecting group differences according to disease severity as measured by the Eastern Cooperative Oncology Group (ECOG) performance status. Univariate and multivariate analyses were constructed to explore the relationship between hopelessness, depression, hastened death and the patients' demographic and clinical characteristics. Results: One factor solution was yielded accounted for 46.64% of the variance. The test—retest reliability was satisfactory ( p < 0.0005). Validity as performed using known-group analysis showed good results. Most significant correlations were found between BHS, ECOG ( p = 0.018) and gender ( p = 0.08). The strongest predictors were gender ( p = 0.050) and ECOG ( p = 0.045). Conclusions: BHS seemed to be a useful instrument to assess pessimistic attitude and hopelessness in a Greek cancer population, with valid psychometric properties.
Background In increasingly multi-ethnic societies fostering cultural awareness and integration of immigrants is not only a political duty but also an obligation for social and healthcare systems. Importantly, cultural beliefs and needs strongly impact on the quality of life of cancer patients and may become even more crucial at the end of life. However, to date, ethnic and cultural aspects of palliative care are insufficiently researched. Methods This qualitative study at the Medical University of Vienna included 21 staff members from different disciplines in oncology and palliative care working with patients with various cultural backgrounds at the end of life. Semi-structured interviews were performed to gain insights into specific aspects of palliative care that are important in the clinical encounter with terminally ill cancer patients with migrant backgrounds and their relatives. Results Interviews revealed specific aspects of palliative care, which fell into four fundamental categories and were all perceived as beneficial in the clinical encounter with migrant clients: (A) structural and (B) personal conditions of the palliative care setting, (C) specific care and treatment intentions and (D) personnel requirements and attitudes. Conclusion This study revealed first insights into possibilities and prospects of transcultural palliative care for migrants and their relatives. The results might have important implications for the end of life care in this growing population.