Building public engagement and access to palliative care and advance care planning: a qualitative study.

BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

Understanding Suicide from an Indigenous Cultural Lens: Insights from Elders in Canada.

In this study, Indigenous Elders in Canada were interviewed to explore their conceptualizations of death and dying, particularly in relation to suicide. Through reflexive thematic analysis, three key themes were developed: Indigenous conceptions of death and dying, Christian influences on views of suicide, and indirect suicide. The theme of Indigenous conceptualizations of death and dying included the subthemes of spirituality and life after death, highlighting the importance of spiritual beliefs in Indigenous culture and knowledge systems. The impact of Christian influences on views of suicide was also explored, with participants discussing the complex nature of the relationship between Christianity and Indigenous peoples. Finally, the theme of indirect suicide was analyzed, referring to deaths resulting from behaviors that do not necessarily fit within the conventional definition of suicide. Overall, this study highlights the importance of honoring Indigenous cultural knowledge in research related to suicide prevention in Indigenous communities.

Experience in Radical Remission: A Self Study and Framework.

The experience of a radical remission from a terminal diagnosis is essentially life altering. The purpose of this self-report is to provide a basis for understanding this event and to provide practitioners a guide for supporting patients during the transition process. A conceptual model is presented that outlines the structure and changes that are influenced during the transition process.

Nurses' Attitudes Towards Death and Their Effects on Spirituality and Spiritual Care.

This study aimed to determine the effect of nurses' attitudes towards death on spirituality and spiritual care. This is a descriptive and correlational study. There was a moderate correlation between the total score on the Spirituality and Spiritual Care Rating Scale and the total and subdimension scores on the Attitude Towards Death Scale. It was found that the scores on the subdimensions of objective acceptance, escaping/acceptance and fear of death explained 41.7% of nurses' perceptions of spirituality and spiritual care. For holistic nursing care, it is very important that nurses are aware of their patients' spiritual needs and are capable of providing supportive spiritual service without regard for their own attitudes towards or spiritual thoughts about death.

Psychotherapeutic Approach for Advanced Illness: Managing Cancer and Living Meaningfully (CALM) Therapy.

With advances in medical treatment and an aging population, there is an increasing global burden of advanced and life-limiting illnesses. Individuals living with these conditions may experience substantial distress related to disease progression, changes in important roles and life goals, loss of meaning, and uncertainty about the future, but there has been limited evidence to inform their psychotherapeutic care. Managing cancer and living meaningfully (CALM) therapy is a brief, evidence-based, semistructured intervention that provides a framework to address practical issues, such as navigating the health care system and treatment decisions, and existential issues, including finding meaning and hope in the face of mortality. CALM has been shown to alleviate and prevent depression and to facilitate preparation for the end of life among patients with advanced cancer. It is being adapted to other life-threatening illnesses and different cultural contexts and health care settings. Advocacy is needed to support such approaches for individuals living with advanced and life-threatening illness.

Religious observance and perceptions of end-of-life care.

This study examines the impact of the level of religious observance on the attitudes toward end-of-life (EOL) decisions and euthanasia of Jews in Israel-where euthanasia is illegal-as compared to Jews living in the USA, in the states where euthanasia is legal. A self-reporting questionnaire on religiosity and personal beliefs and attitudes regarding EOL care and euthanasia was distributed, using a convenience sample of 271 participants from Israel and the USA. Findings show that significant differences were found in attitudes between Jews of different levels of religious observance with respect to patient autonomy, right to die with dignity, and dying in familiar and supportive surroundings. The USA and Israeli Jews have similar knowledge regarding EOL care and expressed similar attitudes and perceptions toward the issues of authority of medical staff and religious figures and patient's autonomy. Findings indicate that the level of religious observance has more potency in shaping their attitudes and perceptions of EOL decisions than the state law. We conclude by discussing the implications of our findings with regard to multicultural health systems and providing practical recommendations.

The medicalisation of the dying self: The search for life extension in advanced cancer.

Although many studies have previously examined medicalisation, we add a new dimension to the concept as we explore how contemporary oncological medicine shapes the dying self as predominantly medical. Through an analysis of multiple case studies collected within a comprehensive cancer centre in Ontario, Canada, we examine how people with late-stage cancer and their healthcare providers enacted the process of medicalisation through engaging in the search for oncological treatments, such as experimental drug trials, despite the incurability of their disease. The seven cases included 20 interviews with patients, family, physicians and nurses, the analysis of 30 documents and 5 hr of field observation. A poststructural perspective informed our study. We propose that searching for life extension enacts medicalisation by shaping the dying person afflicted with terminal cancer into new medical subjectivities that are knowledgeable, active, entrepreneurial and curative. Participants initially took up medical thinking from the formal oncology system, but then began to apply and internalise medical rationalities to alter their personhood, thereby generating new curative possibilities for themselves. For people seeking life extension, the embodied and day-to-day experiences of suffering and being close to death became expressed and moderated in fundamentally medicalised terms.

Palliative Nursing and Sacred Medicine: A Holistic Stance on Entheogens, Healing, and Spiritual Care.

The fields of palliative and holistic nursing both maintain a commitment to the care of the whole person, including a focus on spiritual care. Advanced serious illness may pose a plethora of challenges to patients seeking to create meaning and purpose in their lives. The purpose of this article is to introduce scholarly dialogue on the integration of entheogens, medicines that engender an experience of the sacred, into the spiritual and holistic care of patients experiencing advanced serious illness. A brief history of the global use of entheogens as well as a case study are provided. Clinical trials show impressive preliminary findings regarding the healing potential of these medicinal agents. While other professions, such as psychology, pharmacy, and medicine, are disseminating data related to patient outcomes secondary to entheogen administration, the nursing literature has not been involved in raising awareness of such advancements. Research is illustrating their effectiveness in achieving integrative experiences for patients confronting advanced serious illness and their ability to promote presence, introspection, decreased fear, and increased joy and acceptance. Evidence-based knowledge surrounding this potentially sensitive topic is necessary to invite understanding, promote scientific knowledge development, and create healing environments for patients, nurses, and researchers alike.

Spirituality, Spiritual Well-Being, and Spiritual Coping in Advanced Heart Failure: Review of the Literature.

Heart failure is a chronic and terminal disease that affects a significant portion of the U.S. population. It is marked by considerable suffering, for which palliative care has been recommended. Palliative care standards require the inclusion of spiritual care, but there is a paucity of literature supporting effective spiritual interventions for the heart failure population. A literature search resulted in 30 articles meeting the criteria for review of spirituality and spiritual coping in the heart failure population. Findings within this body of literature include descriptive evidence of the uniqueness of spirituality in this population, quantitative and qualitative approaches to inquiry, theoretical models of spiritual coping, and proposed interventions. The article concludes with implications for future research and practice.

Outcome measurement and complex physical, psychosocial and spiritual experiences of death and dying.

Patients with advanced illnesses, especially near the end of life, often experience multiple complex symptoms which may have profound impact on the quality of life of not only the patients but also their family members. Early and prompt recognition of such clinical challenges is linked with better end of life care for the dying patients, their caregivers and family members. In this narrative, which is not meant to be an in-depth systematic review, we attempt to provide an overview of some commonly used outcome measurement tools available for bedside clinical assessment of the different dimensions of suffering, especially near the time of death. We also mention need for recognition of conditions, like delirium and other personal, environmental and social factors, to draw the readers' attention towards the importance of such assessments, as these may influence interpretation of patient responses on the tools being used to measure outcomes.

#Deathbedlive: the end-of-life trajectory, reflected in a cancer patient's tweets.

BACKGROUND: Understanding physical and psycho-social illness trajectories towards the end of life can help in the planning of palliative and supportive care. With terminal patients increasingly seeking and sharing health information and support via social media, it is timely to examine whether these trajectories are reflected in their digital narratives. In this exploratory study, we analysed the Twitter feed of prominent cancer sufferer and physician, Kate Granger, over the final 6 months of her life. METHODS: With the consent of Kate's widower, Chris Pointon, 1628 Twitter posts from @GrangerKate were manually screened. The 550 tweets judged relevant to her disease were qualitatively content analysed with reference to the six modifiable dimensions of the patient experience in Emanuel and Emanuel's 'framework for a good death'. The frequency of each tweet category was charted over time and textual content was examined and cross-referenced with key events, to obtain a deeper understanding of its nature and significance. RESULTS: Tweets were associated with physical symptoms (N = 270), psychological and cognitive symptoms (N = 213), social relationships and support (N = 85), economic demands and care giving needs (N = 85), hopes and expectations (N = 51) and spiritual beliefs (N = 7). While medical treatments and procedures were discussed in detail, medical information-seeking was largely absent, likely reflecting Kate clinical expertise. Spirituality was expressed more as hope in treatments or "someone out there listening", than in religious terms. The high value of Kate's palliative care team was a dominant theme in the support category, alongside the support she received from her online community of fellow sufferers, friends, family and colleagues. Significant events, such as medical procedures and hospital stays generated the densest Twitter engagement. Transitions between trajectory phases were marked by changes in the relative frequency of tweet-types. CONCLUSIONS: In Kate's words, "the power of patient narrative cannot be underestimated". While this analysis spanned only 6 months, it yielded rich insights. The results reflect theorised end-of-life dimensions and reveal the potential of social media data and digital bio-ethnography to shine a light on terminal patients' lived experiences, coping strategies and support needs, suggesting new opportunities for enhancing personalised palliative care and avenues for further research.

Spiritual Care in the Intensive Care Unit: A Narrative Review.

Spiritual care is an important component of high-quality health care, especially for critically ill patients and their families. Despite evidence of benefits from spiritual care, physicians and other health-care providers commonly fail to assess and address their patients' spiritual care needs in the intensive care unit (ICU). In addition, it is common that spiritual care resources that can improve both patient outcomes and family member experiences are underutilized. In this review, we provide an overview of spiritual care and its role in the ICU. We review evidence demonstrating the benefits of, and persistent unmet needs for, spiritual care services, as well as the current state of spiritual care delivery in the ICU setting. Furthermore, we outline tools and strategies intensivists and other critical care medicine health-care professionals can employ to support the spiritual well-being of patients and families, with a special focus on chaplaincy services.

Fear, Pain, Denial, and Spiritual Experiences in Dying Processes.

PURPOSE: Approaching death seems to be associated with physiological/spiritual changes. Trajectories including the physical-psychological-social-spiritual dimension have indicated a terminal drop. Existential suffering or deathbed visions describe complex phenomena. However, interrelationships between different constituent factors (e.g., fear and pain, spiritual experiences and altered consciousness) are largely unknown. We lack deeper understanding of patients' inner processes to which care should respond. In this study, we hypothesized that fear/pain/denial would happen simultaneously and be associated with a transformation of perception from ego-based (pre-transition) to ego-distant perception/consciousness (post-transition) and that spiritual (transcendental) experiences would primarily occur in periods of calmness and post-transition. Parameters for observing transformation of perception (pre-transition, transition itself, and post-transition) were patients' altered awareness of time/space/body and patients' altered social connectedness. METHOD: Two interdisciplinary teams observed 80 dying patients with cancer in palliative units at 2 Swiss cantonal hospitals. We applied participant observation based on semistructured observation protocols, supplemented by the list of analgesic and psychotropic medication. Descriptive statistical analysis and Interpretative Phenomenological Analysis (IPA) were combined. International interdisciplinary experts supported the analysis. RESULTS: Most patients showed at least fear and pain once. Many seemed to have spiritual experiences and to undergo a transformation of perception only partly depending on medication. Line graphs representatively illustrate associations between fear/pain/denial/spiritual experiences and a transformation of perception. No trajectory displayed uninterrupted distress. Many patients seemed to die in peace. Previous near-death or spiritual/mystical experiences may facilitate the dying process. CONCLUSION: Approaching death seems not only characterized by periods of distress but even more by states beyond fear/pain/denial.

Rural District Nursing Experiences of Successful Advocacy for Person-Centered End-of-Life Choice.

Choices in care during the end stages of life are limited by the lack of resources and access for rural people. Nursing advocacy based on the holistic understanding of people and their rural communities may increase the opportunity for choice and improve the quality of care for people living and dying at home. Pragmatism and nurse agency theory were used for a practical exploration of how district nurses successfully advocate for rural Australian end-of-life goals to begin the development of a practice model. In two stages of data collection, rural district nurse informants ( N = 7) were given the opportunity to reflect on successful advocacy and to write about their experiences before undertaking further in-depth exploration in interviews. They defined successful advocacy as "caring" that empowers people in the "big and small" personal goals important for quality of life. The concepts described that enable successful advocacy were organized into a network with three main themes of "willing" investment in holistic person-centered care, "knowing" people and resources, and feeling "supported." The thematic network description provides deep insight into the emotional skill and moral agency involved in successful end-of-life nurse advocacy and can be used as a sound basis for modeling and testing in future research.

Thoughts about Dying in America: Enhancing the impact of one's life journey and legacy by also planning for the end of life.

This Perspective offers a summary of the recommendations in the Institute of Medicine report Dying in America How we die is a deeply personal issue that each of us will face. However, the approach to end-of-life (EOL) care in the United States needs improvement. Too frequently, healthcare delivery is uncoordinated and has many providers who are not adequately prepared to have meaningful conversations about EOL planning. This is amplified by payment systems and policies that create impediments, misunderstanding, and sometimes misinformation. Dying in America made five recommendations to improve quality and honor individual preferences near the EOL beginning with making conversations with providers and families something that occurs during various phases of the life cycle and not just when one is facing serious illness or possible EOL. It was recommended (i) that public and private payers and care delivery organizations cover the provision of comprehensive care that is accessible and available to individuals on a 24/7 schedule; (ii) that professional societies and other entities establish standards for clinician patient communication and advance care planning and that payers and care delivery organizations adopt them; (iii) that educational institutions, credentialing bodies, accrediting boards, state regulatory agencies, and care delivery organizations establish palliative care training, certification, and/or licensure requirements; (iv) that public and private payers and care delivery organizations integrate the financing of health and social services; and (v) that public and private organizations should engage their constituents and provide fact-based information to encourage advance care planning and informed choice.

Mindfulness, Mysticism, and Narrative Medicine.

Mindfulness based interventions (MBIs) are rapidly emerging in health care settings for their role in reducing stress and improving physical and mental health. In such settings, the religious roots and affiliations of MBIs are downplayed, and the possibilities for developing spiritual, even mystical, states of consciousness are minimized. This article helps rebalance this trend by using the tools of medical humanities and narrative medicine to explore MBI as a bridge between medical and spiritual approaches to health related suffering. My narrative medicine method draws insights from the arts and humanities that are rarely used in standard clinical research but are increasingly common among medical humanities and narrative medicine scholars. The specific path I take will be to work through historical, linguistic, and philosophic dimensions of mindfulness and mysticism as relevant to illness, suffering, death, and dying. I close with two case examples in which mindfulness is used as an intentionally spiritual practice for health concerns.

The Haircut.

The article describes my experience - and the lessons learned - with a terminally ill patient in 1977 as a clinical pastoral education chaplain intern.

Recognition and the Fleeting Glimpse of Intimacy: Tracing the Chaplain's Response to Ungrieved Death.

The article traces the response of the hospital chaplain witnessing ungrieved death. Linking grief with cultural recognition, the article analyzes the absence of grief on the occasion of death within outcast social spheres. It then outlines the ways chaplains both participate in the cultural norms that render lives ungrievable and, conversely, in the solidarity of God, who cares for every life and death. The article closes by situating the chaplain as a liminal figure and proposing liminality itself as an opportunity for solidarity.

Doença e Morte na Umbanda Branca: A Legião Branca Mestre Jesus / Illness and Death in the White Umbanda: The Master Jesus White Legion

Neste artigo expõem-se e analisam-se as concepções de doença e morte presentes em um renomado centro de cura espiritual, mediante procedimento etnográficos e a consideração dos seus implícitos. Subjacente ao surgimento da Legião Branca Mestre Jesus conta-se a história de uma família de índios cujos fundadores, depois de mortos, se unem no “plano espiritual” para atrair e reunir os seus membros que entretanto se haviam dispersado. Esta narrativa parece ser uma metáfora do encontro edesencontro entre colonizadores e suas vítimas africanas e indígenas. A doença é significada como um sinal de pertencimento a essa família e o fatodos “médicos” serem entendidos como mortos, propõe uma relação defamiliaridade com a morte. A concepção reencarnacionista propicia a composição de laços entre biografias diversas, interligando uma revisão da própria identidade a memórias sociais da escravidão, da subjugação coloniale do etnocídio indígena...

This article sets out and analyzes the concepts of illness and death present in a renowned center for spiritual healing, through ethnographic procedures and consideration of their implicit. Underlying the emergence of the LegiãoBranca Mestre Jesus tells the story of a family of Indians whose founders, when dead, have joined in the "spiritual plane" to attract and bring together its member, however, had dispersed to. This narrative seems to be a metaphor for the agreements and disagreements between settlers and their indigenous and africans victims. The disease is meant as a sign of belonging to this family and the fact that "doctors" are seen as dead, proposes a relationship of familiarity with death. The reincarnation concept enables the formation of bonds between various biographies, linking an examination of his social identity to memories of slavery, colonial oppression and ethnic cleansing of the indigenous...

Doença e morte na umbanda branca: a Legião Branca Mestre Jesus / Illness and death in the white umbanda: the master Jesus White Legion

Neste artigo expõem-se e analisam-se as concepções de doença e morte presentes em um renomado centro de cura espiritual, mediante procedimento etnográficos e a consideração dos seus implícitos. Subjacente ao surgimento da Legião Branca Mestre Jesus conta-se a história de uma família de índios cujos fundadores, depois de mortos, se unem no “plano espiritual” para atrair e reunir os seus membros que entretanto se haviam dispersado. Esta narrativa parece ser uma metáfora do encontro e desencontro entre colonizadores e suas vítimas africanas e indígenas. A doença é significada como um sinal de pertencimento a essa família e o fato dos “médicos” serem entendidos como mortos, propõe uma relação de familiaridade com a morte. A concepção reencarnacionista propicia a composição de laços entre biografias diversas, interligando uma revisão da própria identidade a memórias sociais da escravidão, da subjugação colonial e do etnocídio indígena. (AU)

This article sets out and analyzes the concepts of illness and death present in a renowned center for spiritual healing, through ethnographic procedures and consideration of their implicit. Underlying the emergence of the Legião Branca Mestre Jesus tells the story of a family of Indians whose founders, when dead, have joined in the "spiritual plane" to attract and bring together its member, however, had dispersed to. This narrative seems to be a metaphor for the agreements and disagreements between settlers and their indigenous and africans victims. The disease is meant as a sign of belonging to this family and the fact that "doctors" are seen as dead, proposes a relationship of familiarity with death. The reincarnation concept enables the formation of bonds between various biographies, linking an examination of his social identity to memories of slavery, colonial oppression and ethnic cleansing of the indigenous. (AU)