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Wong, Paul T. P., and Timothy T. F. Yu. "Existential Suffering in Palliative Care: An Existential Positive Psychology Perspective." Medicina 57, no. 9 (September 1, 2021): 924. http://dx.doi.org/10.3390/medicina57090924.
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The COVID-19 pandemic has exposed the inadequacies of the current healthcare system and needs a paradigm change to one that is holistic and community based, illustrated by the healing wheel. The present paper proposes that existential positive psychology (PP 2.0) represents a promising approach to meet the rising needs in palliative care. This framework has a twofold emphasis on (a) how to transcend and transform suffering as the foundation for wellbeing and (b) how to cultivate our spiritual and existential capabilities to achieve personal growth and flourishing. We propose that these objectives can be achieved simultaneously through dialectical palliative counselling, as illustrated by Wong’s integrative meaning therapy and the Conceptual Model of CALM Therapy in palliative care. We then outline the treatment objectives and the intervention strategies of IMT in providing palliative counselling for palliative care and hospice patients. Based on our review of recent literature, as well as our own research and practice, we discover that existential suffering in general and at the last stage of life in particular is indeed the foundation for healing and wellbeing as hypothesized by PP 2.0. We can also conclude that best palliative care is holistic—in addition to cultivating the inner spiritual resources of patients, it needs to be supported by the family, staff, and community, as symbolized by the healing wheel.
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Ewalds-Kvist, Béatrice, and Kim Lützén. "Miss B Pursues Death and Miss P Life in the Light of V. E. Frankl's Existential Analysis/Logotherapy." OMEGA - Journal of Death and Dying 71, no. 2 (March 10, 2015): 169–97. http://dx.doi.org/10.1177/0030222815570599.
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Ms B's in United Kingdom and Ms P's in Finland choices in life when dealing with acute ventilator-assisted tetraplegia were analyzed by means of Viktor E. Frankl's existential analysis/logotherapy. The freedom of will to existential meaning and to worth in one's suffering realizes in the attitudinal change the person chooses or is forced to adopt when subject to severe circumstances. Life becomes existentially meaningful relative to inescapable suffering by the completion of three values: creative, experiential, and attitudinal values. If the search for meaning on these paths is frustrated or obstructed, a person's will to meaning transforms into existential frustration along with an existential vacuum and feelings of despair emerge and harm the person's will to survive. However, a person's frustrated meaning in life, when subject to unavoidable severe conditions, can be averted and redirected by applying the basic tenets in an existential analytic/logotherapeutic approach to the extreme situation.
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Amonoo, Hermioni L., Jennifer H. Harris, William S. Murphy, Janet L. Abrahm, and John R. Peteet. "The Physician’s Role in Responding to Existential Suffering: What Does It Mean to Comfort Always?" Journal of Palliative Care 35, no. 1 (April 10, 2019): 8–12. http://dx.doi.org/10.1177/0825859719839332.
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Existential suffering is commonly experienced by patients with serious medical illnesses despite the advances in the treatment of physical and psychological symptoms that often accompany incurable diseases. Palliative care (PC) clinicians wishing to help these patients are faced with many barriers including the inability to identify existential suffering, lack of training in how to address it, and time constraints. Although mental health and spiritual care providers play an instrumental role in addressing the existential needs of patients, PC clinicians are uniquely positioned to coordinate the necessary resources for addressing existential suffering in their patients. With this article, we present a case of a patient in existential distress and a framework to equip PC clinicians to assess and address existential suffering.
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Wilson, Keith G., Harvey Max Chochinov, Christine J. McPherson, Katerine LeMay, Pierre Allard, Srini Chary, Pierre R. Gagnon, et al. "Suffering With Advanced Cancer." Journal of Clinical Oncology 25, no. 13 (May 1, 2007): 1691–97. http://dx.doi.org/10.1200/jco.2006.08.6801.
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Purpose The alleviation of suffering is a central goal of palliative care, but little research has addressed the construct of suffering as a global experience of the whole person. We inquired into the sense of suffering among patients with advanced cancer to investigate its causes and correlates. Patients and Methods Semistructured interviews were administered to 381 patients. The interviews inquired about physical symptoms, social concerns, psychological problems, and existential issues. We also asked, “In an overall, general sense, do you feel that you are suffering?” Results Almost half (49.3%) of respondents did not consider themselves to be suffering, and 24.9% felt that they suffered only mildly. However, 98 participants (25.7%) were suffering at a moderate-to-extreme level. The latter participants were more likely to experience significant distress on 20 of the 21 items addressing symptoms and concerns; the highest correlations were with general malaise (rho [ρ]= 0.56), weakness (ρ = 0.42), pain (ρ = 0.40), and depression (ρ = .39). In regression analyses, physical symptoms, psychological distress, and existential concerns, but not social issues, contributed to the prediction of suffering. In qualitative narratives, physical problems accounted for approximately half (49.5%) of patient reports of suffering, with psychological, existential, and social concerns accounting for 14.0%, 17.7%, and 18.8%, respectively. Conclusion Many patients with advanced cancer do not consider themselves to be suffering. For those who do, suffering is a multidimensional experience related most strongly to physical symptoms, but with contributions from psychological distress, existential concerns, and social-relational worries.
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Applebaum, Allison J., Maria Kryza-Lacombe, Justin Buthorn, Antonio DeRosa, Geoff Corner, and Eli L. Diamond. "Existential distress among caregivers of patients with brain tumors: a review of the literature." Neuro-Oncology Practice 3, no. 4 (December 8, 2015): 232–44. http://dx.doi.org/10.1093/nop/npv060.
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Abstract Background Attention to existential needs is a component of comprehensive oncologic care, and understanding these needs among informal caregivers of patients with brain tumors is necessary to provide them with comprehensive psychosocial care. The purpose of this systematic review was to synthesize the literature on existential distress experienced by these informal caregivers to inform the development of psychotherapeutic interventions for this population. Methods A systematic review was conducted using electronic medical databases. Studies that examined any element of existential distress among informal caregivers of patients with brain tumors were included. A final sample of 35 articles was reviewed. Results Six existential themes emerged: identity; isolation; responsibility and guilt; death anxiety; deriving meaning and personal growth; and spirituality and religion. The unique existential experience of parenting a patient with a brain tumor also emerged. Existential distress in all areas was identified as experienced early in the cancer trajectory and as a critical, unmet need. Conclusions Existential distress is well documented among informal caregivers of patients with brain tumors and is a significant driving force of burden. Awareness and acknowledgement of this distress, as well as interventions to ameliorate this suffering, are needed. More candid communication between health care providers and caregivers about brain tumor prognosis and caregivers' existential distress may improve their psychosocial outcomes.
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October, Tessie W. "Is All Suffering Equal or Is It Time to Address Existential Suffering?*." Pediatric Critical Care Medicine 19, no. 3 (March 2018): 275–76. http://dx.doi.org/10.1097/pcc.0000000000001447.
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Ciancio, Allysa L., Raza M. Mirza, Amy A. Ciancio, and Christopher A. Klinger. "The Use of Palliative Sedation to Treat Existential Suffering: A Scoping Review on Practices, Ethical Considerations, and Guidelines." Journal of Palliative Care 35, no. 1 (February 13, 2019): 13–20. http://dx.doi.org/10.1177/0825859719827585.
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Context: Though palliative sedation has been recognized as an acceptable practice in Canada for many years now, there is a lack of clinical research and guidelines pertaining to its use as a treatment of existential refractory symptoms in the terminally ill. Objectives: This scoping review aimed to survey the literature surrounding palliative sedation and existential suffering and to inform research, policy, and practice. Methods: To address the main research question: Is palliative sedation an acceptable intervention to treat existential refractory symptoms in adults aged 65 and older? a scoping review following Arksey and O’Malley’s framework was performed, spanning electronic databases of the peer reviewed and grey literature. Articles were screened for inclusion, and a thematic content analysis allowed for a summary of key findings. Results: Out of 427 search results, 71 full text articles were obtained, 20 of which were included. Out of these articles, four themes were identified as key findings. These included: (1) Ethical considerations; (2) The role of the health care provider; looking specifically at the impact on nurses; (3) The need for multidisciplinary care teams; and (4) Existential suffering’s connection to religiosity and spirituality. Conclusion: Palliative sedation to treat existential refractory symptoms was labelled a controversial practice. A shortage of evidence-based resources limits the current literature’s ability to inform policy and clinical practice. There is a need for both qualitative and quantitative multi-center research so health care professionals and regional-level institutions have firm roots to establish proper policy and practice.
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Fay, Zara, and Colm OBoyle. "How specialist palliative care nurses identify patients with existential distress and manage their needs." International Journal of Palliative Nursing 25, no. 5 (May 2, 2019): 233–43. http://dx.doi.org/10.12968/ijpn.2019.25.5.233.
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Background: Existential distress is a term used when patients who are coming towards the end of their lives exhibit profound suffering, related particularly to their thoughts on life and existence. The clinical expression of this phenomenon has not been widely researched, and so specialist palliative care nurses were asked how they identify and manage this patient cohort. Aims: To explore how palliative-care nurses identify patients with existential distress and manage their needs. Methods: A qualitative descriptive design with thematic content analysis of transcribed interviews. Findings: Behavioural changes, agitation, social withdrawal and communication difficulties are identified as indicators of possible existential distress. Susceptible patient groups are identified. Nurses acknowledged that caring for patients with existential distress can be emotionally demanding. Being present and building relationships with patients are identified as enabling meaning-making. Sedation for refractory distress is seen as a last resort. Conclusion: Early identification of existential distress by carers could enable timely intervention (counselling, psychotherapy and or spiritual guidance) to improve the patients' quality of life in the terminal phase of their illness and avoid intractable or refractory existential distress that may necessitate palliative sedation.
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MURATA, HISAYUKI, and TATSUYA MORITA. "Conceptualization of psycho-existential suffering by the Japanese Task Force: The first step of a nationwide project." Palliative and Supportive Care 4, no. 3 (September 2006): 279–85. http://dx.doi.org/10.1017/s1478951506060354.
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Background and purpose:Although the relief of psycho-existential or spiritual suffering is one of the most important roles of palliative care clinicians, lack of an accepted conceptual framework leads to considerable confusion in research in this field. The primary aim of this article is to illustrate the process of developing a conceptual framework by the Japanese Task Force as the initial step of a nationwide project.Methods:We used consensus-building methods with 26 panel members and 100 multidisciplinary peer reviewers. The panel consisted of six palliative care physicians, six psychiatrists, five nursing experts, four social workers or psychologists, two philosophers, a pastoral care worker, a sociologist, and an occupational therapist. Through 2 days of face-to-face discussion and follow-up discussion by e-mail, we reached a consensus.Results:The group agreed to adopt a conceptual framework as the starting point of this study, by combining the empirical model from multicenter observations, a theoretical hypothesis, and good death studies in Japan. We defined “psycho-existential suffering” as “pain caused by extinction of the being and the meaning of the self.” We assumed that psycho-existential suffering is caused by the loss of essential components that compose the being and the meaning of human beings: loss of relationships (with others), loss of autonomy (independence, control over future, continuity of self), and loss of temporality (the future). Sense of meaning and peace of mind can be interpreted as an outcome of the psycho-existential state and thus the general end points of our interventions. This model extracted seven categories to be intensively studied in the future: relationship, control, continuity of self, burden to others, generativity, death anxiety, and hope.Conclusions:A Japanese nationwide multidisciplinary group agreed on a conceptual framework to facilitate research in psycho-existential suffering in terminally ill cancer patients. This model will be revised according to continuing qualitative studies, surveys, and intervention trials.
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Boston, Patricia, Anne Bruce, and Rita Schreiber. "Existential Suffering in the Palliative Care Setting: An Integrated Literature Review." Journal of Pain and Symptom Management 41, no. 3 (March 2011): 604–18. http://dx.doi.org/10.1016/j.jpainsymman.2010.05.010.
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Fowler, N., A. Uebelhor, X. Hu, S. Johns, and K. Judge. "EXISTENTIAL SUFFERING AND PSYCHOLOGICAL SYMPTOMS AMONG DEMENTIA CAREGIVERS RECEIVING COLLABORATIVE CARE." Innovation in Aging 2, suppl_1 (November 1, 2018): 246. http://dx.doi.org/10.1093/geroni/igy023.918.
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Karlsson, Margareta, Anne Kasén, and Carola Wärnå-Furu. "Reflecting on one's own death: The existential questions that nurses face during end-of-life care." Palliative and Supportive Care 15, no. 2 (June 27, 2016): 158–67. http://dx.doi.org/10.1017/s1478951516000468.
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AbstractObjective:When registered nurses care for patients at the end of life, they are often confronted with different issues related to suffering, dying, and death whether working in hospital or community care. Serious existential questions that challenge nurses’ identities as human beings can arise as a result of these situations. The aim of our study was to describe and gain a deeper understanding of nurses’ existential questions when caring for dying patients.Method:Focus-group interviews with registered nurses who shared similar experiences and backgrounds about experiences in end-of-life care were employed to gain a deeper understanding about this sensitive subject. Focus-group interviews were performed in hospice care, in community care, and in a palliative care unit in western Sweden. A qualitative hermeneutic approach was employed to interpret the data.Results:Nurses’ existential questions balanced between responsibility and guilt in relation to their patients, between fear and courage in relation to being professional caregivers and fellow human beings, and between hope and despair in relation to the other's and their own death.Significance of results:Nurses in end-of-life care experience various emotions from patients related to things physical, spatial, and temporal. When nurses encounter these emotions as expressing a patient's suffering, they lead to challenges of balancing between different feelings in relation to patients, as both professional caregivers and fellow human beings. Nurses can experience growth both professionally and as human beings when caring for patients at the end of life.
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Ventegodt, Søren, Niels Jørgen Andersen, Shimshon Neikrug, Isack Kandel, and Joav Merrick. "Clinical Holistic Medicine: Holistic Treatment of Mental Disorders." Scientific World JOURNAL 5 (2005): 427–45. http://dx.doi.org/10.1100/tsw.2005.50.
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We believe that holistic medicine can be used for patient's with mental health disorders. With holistic psychiatry, it is possible to help the mentally ill patient to heal existentially. As in holistic medicine, the methods are love or intense care, winning the trust of the patient, getting permission to give support and holding, and daring to be fully at the patient's service. Our clinical experiences have led us to believe that mental health patient's can heal if only you can make him or her feel the existential pain at its full depth, understand what the message of the suffering is, and let go of all the negative attitudes and beliefs connected with the disease. Many mentally ill young people would benefit from a few hours of existential holistic processing in order to confront the core existential pains. To help the mentally ill patient, you must understand the level of responsibility and help process the old traumas that made the patient escape responsibility for his or her own life and destiny. To guide the work, we have developed a responsibility scale going from (1) free perception over (2) emotional pain to (3) psychic death (denial of life purpose) further down to (4) escape and (5) denial to (6) destruction of own perception and (7) hallucination further down to (8) coma, suicide, and unconsciousness. This scale seems to be a valuable tool to understand the state of consciousness and the nature of the process of healing that the patient must go through.
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Lethborg, Carrie, Sanchia Aranda, Shelley Cox, and David Kissane. "To what extent does meaning mediate adaptation to cancer? The relationship between physical suffering, meaning in life, and connection to others in adjustment to cancer." Palliative and Supportive Care 5, no. 4 (October 25, 2007): 377–88. http://dx.doi.org/10.1017/s1478951507000570.
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ABSTRACTObjectives:This study builds on previous work that explored the lived experience of meaning in advanced cancer. The aims were to explore the associations of suffering (physical and existential distress) and coping (via social support) with psychological distress and global meaning using a battery of instruments among adults attending an Australian metropolitan cancer service (n = 100).Methods:The contribution of suffering and coping via social support to psychological distress and meaning were examined using a variety of statistical methods. Multiple regression analyses were conducted to further examine relative contributions to both psychological distress and global meaning.Results:Physical and existential distress were found to be positively associated with psychological distress whereas high social support and personal meaning are related to lower levels of psychological distress. Social support was the strongest correlate of global meaning whereas high levels of existential distress were related to lower levels of global meaning. On the basis of this study, it is concluded that the factors related to suffering clearly promote psychological distress, and the reverse is true for global meaning for those living with cancer.Significance of results:This study speaks to the clinical complexity of the dynamic experience of suffering and meaning in cancer. We need to better understand the impact of physical suffering and meaning in the lives of this population and to actively work toward the enhancement of social support and connection with others for this group. Optimal palliative and family-centered care blended with therapies that promote a sense of meaning of life lived appear crucial to ameliorate suffering.
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Wakiuchi, Julia, Anna Maria de Oliveira Salimena, and Catarina Aparecida Sales. "Being cared by a family member: the existential feelings of cancer patients." Texto & Contexto - Enfermagem 24, no. 2 (June 2015): 381–89. http://dx.doi.org/10.1590/0104-07072015003760013.
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The present article aimed to understand the daily life of cancer patients under palliative care while experiencing home care provided by family members. This was a Heideggerian phenomenological study with 20 patients being treated at the primary health care service of Northeast Paraná, Brazil, between November 2012 and February 2013. Data collection was based on the following research guiding question: What has been your experience of being cared for by your family? Phenomenological analysis was conducted by selecting units of meaning from statements and then selecting ontologic themes, namely: "being alone in the presence of the other" and "finding the foundation of care in love." In conclusion, when based on love and solicitude, home care coupled with palliative practices can give "wings" to those who are suffering and perceive their lives as threatened.
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Melin-Johansson, Christina, Gunvor Ödling, Bertil Axelsson, and Ella Danielson. "The meaning of quality of life: Narrations by patients with incurable cancer in palliative home care." Palliative and Supportive Care 6, no. 3 (July 28, 2008): 231–38. http://dx.doi.org/10.1017/s1478951508000370.
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ABSTRACTObjective:The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden.Methods:To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004–2006. Qualitative content analysis was used to interpret the meaning regarding quality of life.Results:Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients’ psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team.Significance of results:This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients’ quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients’ entire life situation and increases quality of life.
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Hardwick, Louise. "Paul Ricoeur’s theory of interpretation adapted as a method for narrative analysis to capture the existential realities expressed in stories from people living with Multiple Sclerosis." Qualitative Social Work 16, no. 5 (March 21, 2016): 649–63. http://dx.doi.org/10.1177/1473325016638423.
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This paper draws on Paul Ricoeur’s theory of interpretation to highlight aspects of the existential realities that emerge woven within the narratives of people living with Multiple Sclerosis (MS). It aims to give social workers and other professionals involved in inter-disciplinary care insight into the meaning-making process and the existential realities interwoven in accounts of lived experience, thereby validating this aspect of experience. To support this approach it also aims to make explicit the method used and interpretation applied to elicit these features. Ten adults with MS from across the North of England were recruited to tell their story related to the onset of, and adjustment to MS. Two of the narratives are presented, and through these, the method used for interpretation derived from the theory of Paul Ricoeur is demonstrated. What emerge, threaded within the events told in a triptych of past, present and future life envisaged, are glimpses of existential realities that evoke universal recognition such as abandonment, loss, acceptance; solidarity, aloneness, suffering and finally calm. The paper concludes that, given chronic conditions like MS often predispose existential deliberation, it is important that these dimensions of lived experience are acknowledged in professional encounters that seek to manage the condition and support people living well with it.
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Johns, Shelley A. "Translating Dignity Therapy into Practice: Effects and Lessons Learned." OMEGA - Journal of Death and Dying 67, no. 1-2 (August 2013): 135–45. http://dx.doi.org/10.2190/om.67.1-2.p.
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Dignity Therapy (DT) is an intervention designed to lessen existential suffering as death draws near. DT has a growing evidence base, with positive outcomes for patients and their family members; however, it is not yet widely available in community settings. The purpose of this project was to translate DT into clinical practice in a cancer center in the midwestern United States. DT was provided to 10 patients with metastatic cancer who completed baseline and post-intervention measures of depression, existential distress, health-related quality of life, and satisfaction with the intervention. DT was found to be feasible and acceptable to the majority of patients and their families. DT outcomes will be presented, along with suggestions for clinicians who are interested in offering DT in their practices.
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Rehnsfeldt,, Arne. "The Relevance of the Ethics of Understanding of Life in Nursing." International Journal of Human Caring 9, no. 4 (June 2005): 39–44. http://dx.doi.org/10.20467/1091-5710.9.4.39.
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The ultimate, universal goal of caring is described by the ethics of understanding of life. The ultimate goal of alleviating suffering is the progression of suffering as an existential sign of development of the understanding of life. The progression of suffering means to create meaning in suffering together with a caregiver. The aim of this study was to elaborate on the ethics of understanding of life in relation to phenomenological aspects of nursing care ethics. Inward and outward ethical decisions affect the patient’s understanding of life through practical ethical care. When the patient and caregiver encounter one another with different understandings of life, there is no development in the understanding of life and the patient may even be abused.
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Tang, Michael, Nhu-Nhu Nguyen, Eduardo Bruera, Kimberson Tanco, and Marvin Delgado-Guay. "Expression of existential suffering in two patients with advanced cancer in an acute palliative care unit." Palliative and Supportive Care 18, no. 6 (October 29, 2020): 748–50. http://dx.doi.org/10.1017/s1478951520001121.
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AbstractBackgroundRecognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering.Case descriptionCase 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down “as he may not wake up.” He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, “Why is it taking so long to die?.” She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death.ConclusionExistential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.
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Jakobsson Ung, Eva, Ann-Charlotte Olofsson, Ida Björkman, Tobias Hallén, Daniel S. Olsson, Oskar Ragnarsson, Thomas Skoglund, Sofie Jakobsson, and Gudmundur Johannsson. "The pre- and postoperative illness trajectory in patients with pituitary tumours." Endocrine Connections 8, no. 7 (July 2019): 878–86. http://dx.doi.org/10.1530/ec-19-0202.
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Objective Experiences and need of support during surgery and start of replacement therapy in patients with pituitary tumours are highly unknown. This study aimed at exploring patient experiences during pre- and postoperative care and recovery after pituitary surgery in patients with a pituitary tumour. Methods Within a qualitative study design, 16 consecutive patients who underwent surgery for pituitary tumours were repeatedly interviewed. In total, 42 interviews were performed before and after surgery. Analysis was performed using qualitative interpretation. Results Suffering a pituitary tumour was overwhelming for many patients and struggling with existential issues was common. Patients expressed loneliness and vulnerability before and after surgery. How professionals handled information in connection with diagnosis greatly affected the patients. Other patients with the same diagnosis were experienced as the greatest support. Normalisation of bodily symptoms and relationships with others were reported during postoperative recovery. However, a fear that the tumour would return was present. Conclusions Patients with pituitary tumours need structured support, including peer support, which acknowledges physical, cognitive as well as emotional and existential concerns. Information related to diagnosis and surgery should be adapted in relation to the loneliness and the existential seriousness of the situation. Care and support for patients with pituitary tumours should preferably be organised based on continuity and an unbroken care pathway from the first pre-operative evaluation through to postoperative care and the start of a life-long endocrine treatment and tumour surveillance.
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SA, Roberto Novaes de, Oditon AZEVEDO JUNIOR,, and Thais Lethier LEITE. "Reflexões fenomenológicas sobre a experiência de estágio e supervisão clínica em um serviço de psicologia aplicada universitário." PHENOMENOLOGICAL STUDIES - Revista da Abordagem Gestáltica 16, no. 2 (2010): 135–40. http://dx.doi.org/10.18065/rag.2010v16n2.1.
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This work proposes a reflection on the specific difficulties of clinical training for the existential-phenomenological perspective. We observed that in the training curriculum in clinical psychology in existential-phenomenological perspective, some difficulties arise due to the inadequacy of the theoretical baggage of newly acquired representations in the course and the kind of comprehensive approach that we are asked to exercise. It is as if the natural attitude of everyday objectifies and crystallizes the meaning of existence and experience of suffering, gaining a reinforcement with the theoretical representations, further blurring the phenomenological attitude of suspension. There is the assumption that the place of psychotherapyst can only be legitimized from a positive knowledge about mental life and, consequently, the attainment of effective techniques for intervention. The experience as students and supervisor training in clinical psychology in addressing the existential-phenomenological psychology course of Fluminense Federal University, shows that these moments of impasse, which installs a “crisis” of theoretical paradigms and professional identities are essential for a redefinition of the role of psychological theories and techniques in the practices of clinical care in the light of a proper understanding of the phenomenological existence.
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Ounalli, Heifa, David Mamo, Ines Testoni, Martino Belvederi Murri, Rosangela Caruso, and Luigi Grassi. "Improving Dignity of Care in Community-Dwelling Elderly Patients with Cognitive Decline and Their Caregivers. The Role of Dignity Therapy." Behavioral Sciences 10, no. 12 (November 24, 2020): 178. http://dx.doi.org/10.3390/bs10120178.
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Demographic changes have placed age-related mental health disorders at the forefront of public health challenges over the next three decades worldwide. Within the context of cognitive impairment and neurocognitive disorders among elderly people, the fragmentation of the self is associated with existential suffering, loss of meaning and dignity for the patient, as well as with a significant burden for the caregiver. Psychosocial interventions are part of a person-centered approach to cognitive impairment (including early stage dementia and dementia). Dignity therapy (DT) is a therapeutic intervention that has been shown to be effective in reducing existential distress, mood, and anxiety symptoms and improving dignity in persons with cancer and other terminal conditions in palliative care settings. The aims of this paper were: (i) To briefly summarize key issues and challenges related to care in gerontology considering specifically frail elderly/elderly with cognitive decline and their caregivers; and (ii) to provide a narrative review of the recent knowledge and evidence on DT in the elderly population with cognitive impairment. We searched the electronic data base (CINAHL, SCOPUS, PSycInfo, and PubMed studies) for studies regarding the application of DT in the elderly. Additionally, given the caregiver’s role as a custodian of diachronic unity of the cared-for and the need to help caregivers to cope with their own existential distress and anticipatory grief, we also propose a DT-dyadic approach addressing the needs of the family as a whole.
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van Wijngaarden, Els, Carlo Leget, and Anne Goossensen. "Experiences and Motivations Underlying Wishes to Die in Older People Who Are Tired of Living: A Research Area in its Infancy." OMEGA - Journal of Death and Dying 69, no. 2 (October 2014): 191–216. http://dx.doi.org/10.2190/om.69.2.f.
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The wish to die in older people who are tired of living and the possibilities to organize death are currently being discussed within the debate on self-determination and physician-assisted suicide. Until now insight into the experiences and thoughts of people who are tired of life but not suffering from a severe depression or a life-threatening disease is lacking. Studies focussing specifically on this topic are rare. This review provides an overview of this research area in its infancy. The existential impact of age-related loss experiences play an important role in developing a wish to die. Other influencing factors are: personal characteristics, biographical factors, social context, perceptions and values. Further research to experiences and motivations underlying these specific age-related wishes to die and the existential impact of the loss-experiences seems necessary to deepen the understanding of this group of older people and for the development of policy and good care.
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van Deijck, Rogier H. P. D., Jeroen G. J. Hasselaar, Petrus J. C. Krijnsen, Amadea J. M. Gloudemans, Stans C. A. H. H. V. M. Verhagen, Kris C. P. Vissers, and Raymond T. C. M. Koopmans. "The Practice of Continuous Palliative Sedation in Long-Term Care for Frail Patients with Existential Suffering." Journal of Palliative Care 31, no. 3 (September 2015): 141–49. http://dx.doi.org/10.1177/082585971503100303.
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Bendixsen, Synnøve K. N. "Existential Displacement: Health Care and Embodied Un/Belonging of Irregular Migrants in Norway." Culture, Medicine, and Psychiatry 44, no. 4 (May 25, 2020): 479–500. http://dx.doi.org/10.1007/s11013-020-09677-3.
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Abstract Drawing on fieldwork and interviews in Oslo and Bergen, Norway, this article discusses irregular migrants’ experiences of existential displacement and the tactics they use to try to re-establish a sense of emplacement and belonging. More specifically, it argues that irregular migrants’ experiences of embodied unbelonging are a consequence of a violent form of governmentality that includes specific laws, healthcare structures, and migration management rationalities. The article makes this argument by tracing how these experiences translate into embodied effects that feature prominently in migrants’ narratives of suffering while living in a country that purports to provide welfare services to all. The narratives of their state of being-in-the-world are ways through which migrants both experience and express the violence and deprivation they face. I argue that these narratives are instances of structures of feeling (Williams 1973), which are shaped by modes of governmentality. The article shows that irregular migrants’ coping strategies centrally involve faith, religious communities and friends. Irregular migrants draw on these relationships to get by, access healthcare, and to resist the (health) effects of social deprivation and political violence. These relationships allow irregular migrants to find meaningful ways of being-in-the-world and rebuilding, to some extent, a sense of entitlement and belonging.
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Holmberg, Mats. "The EXPAND-Model: A Hermeneutical Application of a Lifeworld-Led Prehospital Emergency Nursing Care." Nursing Science Quarterly 34, no. 3 (July 2021): 287–93. http://dx.doi.org/10.1177/08943184211010456.
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Prehospital emergency care is the response to a patient’s life-threatening and critical medical condition out of hospital. Patients experience this as both existential and physical suffering. There is therefore a need to combine medical care and treatment with a caring science approach in order to provide lifeworld-led nursing care. A model for the application of lifeworld-led prehospital emergency nursing care was developed using Paul Ricoeur’s philosophy, bringing together the concepts understanding and explanation. The model comprises the phases of primary understanding, structural explanation, and secondary understanding, which together integrate medical care with a lifeworld perspective on the patient’s illness or injury.
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Feijoo, Ana Maria Lopez Calvo de, Myriam Moreira Protasio, and Guilherme Da Silva Sant’Anna. "Desespero e sofrimento no discurso de pessoas que pensam em tirar a própria vida: uma análise existencial." Revista Pesquisa Qualitativa 6, no. 11 (August 1, 2018): 328. http://dx.doi.org/10.33361/rpq.2018.v.6.n.11.188.
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Resumo: Esta investigação quer mostrar de que forma expressões de desespero e sofrimento estão presentes no discurso clínico de pessoas que se encontram entre o morrer e o viver. O interesse por estas expressões apareceu de forma relevante em uma primeira pesquisa sobre suicídio. Para alcançarmos a experiência dos analisandos, buscamos as expressões que caracterizavam o sofrer e o desesperar em sete atendimentos realizados no Núcleo de Atendimento Clínico a Pessoas em Risco de Suicídio do SPA da UERJ no segundo semestre de 2017. Procedemos à análise dessas situações clínicas, de modo a podermos descrever como o desespero e o sofrimento apareciam nos discursos dos analisandos. Concluímos não haver uma relação necessária entre sofrimento, desespero e indecisão acerca do suicídio.Palavras-chave: Suicídio; Desespero; Sofrimento; Análise existencial; Hermenêutica. Despair and suffering in the discourse of people who think about ending their own lives: an existential analysisAbstract: This research wants to show how expressions of despair and suffering are present in the clinical discourse of people who are between dying and living. The interest in these expressions appeared prominently in a first suicide survey. To achieve the experience, we seek for the expressions that characterized the suffering and the despair in seven attendances in the Nucleus of Clinical Care for People at Risk of Suicide at the SPA of UERJ in the second semester of 2017. The analysis of these clinical situations was carried out in order to describe how despair and suffering appeared in the discourses of the analysands. We conclude that there is no necessary relationship between suffering, despair and indecision on suicide.Keywords: Suicide; Despair; Suffering; Existential analysis; Hermeneutics.
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Blinderman, Craig D., and Alex Beth Schapiro. "Integrating contemplative and spiritual care in outpatient palliative care: A pilot study." Journal of Clinical Oncology 34, no. 26_suppl (October 9, 2016): 247. http://dx.doi.org/10.1200/jco.2016.34.26_suppl.247.
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247 Background: Spiritual support is associated with better outcomes in cancer care and at the end of life (1, 2). Consensus guidelines advocate for incorporating spiritual care in the provision of specialist level palliative care (3). Contemplative care practices and chaplaincy interventions have the potential for mitigating existential distress, cultivating prognostic awareness, and fostering spiritual approaches to grieving and coping with advanced cancer. We present the results of a pilot program demonstrating the feasibility and impact of integrating a contemplative care chaplain in an outpatient palliative care program in a culturally diverse patient population in a large, academic cancer center. Methods: Case series and descriptive analysis. A description of 10 cases seen by a contemplative care chaplain in our outpatient palliative care clinic in the Herbert Irving Comprehensive Cancer Center (HICCC) at Columbia University will be presented. A descriptive analysis using a chaplaincy-centered model of assessment will highlight the domains of suffering and subjective integration of psychosocial and spiritual concepts. Results: Patients were generally in favor of meeting with and sharing their feelings openly with the chaplain. Patients’ describe important domains pertinent to their well being: meaning, family integration, spiritual practices, existential concerns, prognostic awareness. Subjective transformation and integration of the following constructs: “healing,” “gratitude,” “anger,” “hope,” “fear” were possible with only a few patient encounters. None of the patients were opposed to an initial visit and assessment. In only one case, the family requested not having further visits due to strong emotional reactions that came up. Conclusions: Preliminary results from a novel, pilot program integrating contemplative and spiritual care in an outpatient palliative care program suggest that it is a feasible intervention and should be considered in other cancer centers. Further studies will need to qualify and quantify the additional value and impact of spiritual care integrated in ambulatory palliative care services.
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Acorn, Michelle. "The integration of personal narratives into hospital-based palliative care can relieve patient psychosocial and existential suffering." Evidence Based Nursing 24, no. 1 (December 23, 2019): 19. http://dx.doi.org/10.1136/ebnurs-2019-103207.
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Thompson, Genevieve N., Harvey M. Chochinov, Keith G. Wilson, Christine J. McPherson, Srini Chary, Fiona M. O'Shea, David R. Kuhl, Robin L. Fainsinger, Pierre R. Gagnon, and Karen A. Macmillan. "Prognostic Acceptance and the Well-Being of Patients Receiving Palliative Care for Cancer." Journal of Clinical Oncology 27, no. 34 (December 1, 2009): 5757–62. http://dx.doi.org/10.1200/jco.2009.22.9799.
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Purpose To identify the impact of prognostic acceptance/nonacceptance on the physical, psychological, and existential well-being of patients with advanced cancer. Patients and Methods A Canadian multicenter prospective national survey was conducted of patients diagnosed with advanced cancer with an estimated survival duration of 6 months or less (n = 381) receiving palliative care services. Results Of the total number of participants, 74% reported accepting their situation and 8.6% reported accepting with “moderate” to “extreme” difficulty. More participants with acceptance difficulties than without acceptance difficulties met diagnostic criteria for a depressive or anxiety disorder (χ2 = 8.67; P < .01). Nonacceptors were younger (t = 4.13; P < .000), had more than high school education (χ2 = 4.69; P < .05), and had smaller social networks (t = 2.53; P < .05) than Acceptors. Of the Nonacceptors, 42% described their experience as one of “moderate” to “extreme” suffering compared with 24.1% of Acceptors (χ2 = 5.28; P < .05). More than one third (37.5%) of Nonacceptors reported feeling hopeless compared with 8.6% who had no difficulty accepting (χ2 = 24.76; P < .000). Qualitatively, participants described active and passive coping strategies that helped them accept what was happening to them, as well as barriers that made it difficult to come to terms with their current situation. Conclusion The challenge of coming to terms with a terminal prognosis is a complex interplay between one's basic personality, the availability of social support, and one's spiritual and existential views on life. Nonacceptance appears to be highly associated with feelings of hopelessness, a sense of suffering, depression, and anxiety, along with difficulties in terms of social–relational concerns.
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Svensson, Cecilia, Anders Bremer, and Mats Holmberg. "Ambulance nurses’ experiences of patient relationships in urgent and emergency situations: A qualitative exploration." Clinical Ethics 14, no. 2 (June 2019): 70–79. http://dx.doi.org/10.1177/1477750919851050.
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Background The ambulance service provides emergency care to meet the patient’s medical and nursing needs. Based on professional nursing values, this should be done within a caring relationship with a holistic approach as the opposite would risk suffering related to disengagement from the patient’s emotional and existential needs. However, knowledge is sparse on how ambulance personnel can meet caring needs and avoid suffering, particularly in conjunction with urgent and emergency situations. Aim The aim of the study was to explore ambulance nurses’ experiences of relationships with patients in urgent and emergency situations. Methods Data collection was performed using individual open-ended interviews with six ambulance nurses. The data were analyzed using a thematic analysis. Results Relationships with patients during urgent and emergency assignments emerged as three themes: “ Ambiguous silence,” “ Professional competence” and “ Challenging inadequacy” comprising eight sub-themes in total. The result shows that the ambulance nurses found it difficult to prioritize between medical care and establishing a caring relationship with the patient. However, sometimes a wordless relationship was perceived sufficient and considered a first step towards a verbal relationship. Conclusions Ambulance nurses experience that a caring relationship cannot and does not need to be prioritized in the acute stage. This uncovers a dichotomy approach to medical care versus caring relationships that exclude a holistic approach. Thus, patients’ emotional, existential and physical needs are not considered as equally important. Clinical relevance: It is important to stimulate reflection on core ethical nursing values, in training and simulation exercises among clinically active ambulance nurses.
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Chilson, Clark. "The meaning of life in medicine: non-religious spiritual care in Japan." European Journal for Person Centered Healthcare 5, no. 4 (December 29, 2017): 527. http://dx.doi.org/10.5750/ejpch.v5i4.1329.
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Within the context of a growing global interest in the role of spirituality in medicine, “spiritual care” has developed as a form of patient-centered care that addresses existential suffering. This paper provides an introduction to spiritual care in Japan. On the basis of publications by leading Japanese authors on spiritual care, it first shows how spiritual care developed in Japan and how it is understood as a way of providing meaning and comfort distinct from “religious care.” Then it introduces some common methods used for spiritual care in Japan. Overall, it argues that the way spiritual care is conceptualized and offered in Japan provides suggestions for how spiritual care might be offered to patients who are non-religious and do not see themselves as “spiritual”.
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Long, Nicholas. "From social distancing to social containment." Medicine Anthropology Theory 7, no. 2 (September 30, 2020): 247–60. http://dx.doi.org/10.17157/mat.7.2.791.
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This essay develops an anthropological critique of ‘social distancing’. While the 2020 coronavirus pandemic requires us to reconfigure established forms of sociality, distancing regimes such as ‘lockdowns’ can profoundly disrupt the provision of care and support, creating practical difficulties and existential suffering. I advocate instead for strategies of ‘social containment’, outlining several of the containment arrangements people in England have developed to reconcile relational obligations with public health imperatives during the pandemic. I end by addressing some of the steps anthropologists must take when translating such ideas into policy.
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Chochinov, Harvey Max, Thomas Hack, Thomas Hassard, Linda J. Kristjanson, Susan McClement, and Mike Harlos. "Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life." Journal of Clinical Oncology 23, no. 24 (August 20, 2005): 5520–25. http://dx.doi.org/10.1200/jco.2005.08.391.
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Purpose This study examined a novel intervention, dignity therapy, designed to address psychosocial and existential distress among terminally ill patients. Dignity therapy invites patients to discuss issues that matter most or that they would most want remembered. Sessions are transcribed and edited, with a returned final version that they can bequeath to a friend or family member. The objective of this study was to establish the feasibility of dignity therapy and determine its impact on various measures of psychosocial and existential distress. Patients and Methods Terminally ill inpatients and those receiving home-based palliative care services in Winnipeg, Canada, and Perth, Australia, were asked to complete pre- and postintervention measures of sense of dignity, depression, suffering, and hopelessness; sense of purpose, sense of meaning, desire for death, will to live, and suicidality; and a postintervention satisfaction survey. Results Ninety-one percent of participants reported being satisfied with dignity therapy; 76% reported a heightened sense of dignity; 68% reported an increased sense of purpose; 67% reported a heightened sense of meaning; 47% reported an increased will to live; and 81% reported that it had been or would be of help to their family. Postintervention measures of suffering showed significant improvement (P = .023) and reduced depressive symptoms (P = .05). Finding dignity therapy helpful to their family correlated with life feeling more meaningful (r = 0.480; P = .000) and having a sense of purpose (r = 0.562; P = .000), accompanied by a lessened sense of suffering (r = 0.327; P = .001) and increased will to live (r = 0.387; P = .000). Conclusion Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.
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Kavas, Mustafa Volkan. "How to Increase the Quality of a Suffering Experience: Lessons Derived From the Diary Narratives of a Dying Adolescent Girl." OMEGA - Journal of Death and Dying 76, no. 3 (March 2, 2017): 256–95. http://dx.doi.org/10.1177/0030222817694667.
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Personal narratives are assumed to be primary sources of the essential meaning of lived experiences of dying. In this study, I analyzed the personal diary of Miraç Fidan, a terminally ill adolescent with advanced cancer who kept a diary until her death at the age of 15. Miraç’s Diary, also published as a book, was subjected to hermeneutic phenomenological narrative analysis. Inferences were drawn regarding the following basic elements: (a) The dynamics in which Miraç lived and (2) her perceptions of herself, her immediate environment, and her experiences. Suffering seems to be the main experience dominating Miraç’s life, which I examined with regard to two dimensions: suffering caused by inevitable factors and suffering caused by preventable/changeable factors. The results suggest that if various causes among contextual factors are neutralized, then the quality of the existential experience determined by the inevitable factors would increase.
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Ashby, Michael. "How We Die: A View from Palliative Care." QUT Law Review 16, no. 1 (March 11, 2016): 5. http://dx.doi.org/10.5204/qutlr.v16i1.619.
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<p style="margin: 0cm 19.85pt 0pt;"><span style="font-family: 'Times New Roman',serif;"><em><span style="font-size: medium;">There is an ongoing global conversation about dying, particularly with regard to treatment abatement decisions, causation and responsibility for death, and relief of physical and existential suffering. There is rising international support for assisted dying. People now tend to die slowly in old age, as a result of multiple chronic illnesses, with more medical decision points and impaired cognitive capacity. This paper describes the dying process from the standpoint of palliative medicine and argues for an improved common recognition of the process of dying, in its contemporary spiritual and social contexts, by the public, medicine, ethics, public policy and the law. </span></em></span></p>
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Choo, Ping Ying, Geraldine Tan-Ho, Oindrila Dutta, Paul Victor Patinadan, and Andy Hau Yan Ho. "Reciprocal Dynamics of Dignity in End-of-Life Care: A Multiperspective Systematic Review of Qualitative and Mixed Methods Research." American Journal of Hospice and Palliative Medicine® 37, no. 5 (October 3, 2019): 385–98. http://dx.doi.org/10.1177/1049909119878860.
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Background: Preserving terminally ill patients’ dignity and well-being through dignified and holistic care has become the overarching goal in palliative care services. However, dignity is a multifaceted concept with a wide range of interpretations under different cultural contexts. Aim: The aim of this review is to understand the variations in subjective interpretations and constitutions of dignity in palliative or end-of-life care via an integrative worldview. Design: This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline and used SPIDER tool to screen for appropriate and relevant articles for analysis. Data Sources: Four major databases were searched including CINAHL, ERIC, Medline, and PsycARTICLES between 2009 and 2018. Forty-eight qualitative studies that examined dignity from the perspectives of patients, family caregivers, and health-care professionals were selected for full text data analysis using thematic synthesis. Results: Analysis of the various concepts of dignity revealed 18 themes that were further categorized into 7 conceptual categories: (1) self-determination, (2) existential liberty, (3) relational connectedness, (4) caregiving revitalization, (5) mindful humanity, (6) patient–family care, and (7) sustainable culture. These 7 categories span across individual, familial, and institutional dimensions, forming a new Dynamic Reciprocity of Dignity model. Conclusions: The Dynamic Reciprocity of Dignity model highlights the importance of adopting a systemic lens to address dignity-related needs and concerns at the end of life, while providing insights on how compassionate care and self-compassion can serve as the foundation of dignified care, which in turn serve as a buffer against patients’ existential suffering as well as caregivers’ burnout and fatigue. Recommendations for clinical practice and future research directions are discussed.
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MURILLO, MAURICIO, and JIMMIE C. HOLLAND. "Clinical practice guidelines for the management of psychosocial distress at the end of life." Palliative and Supportive Care 2, no. 1 (March 2004): 65–77. http://dx.doi.org/10.1017/s1478951504040088.
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After years of neglect, care at the end of life is receiving increasing attention and concern. It is then that the body is consumed by a progressive and mortal illness, and the person must cope not only with the bodily symptoms, but also with the existential crisis of the end of life and approaching death. As the body suffers, the mind is indeed “commanded … to suffer with the body,” as Shakespeare so well described. Thus, suffering near the end of life encompasses both the mind and the body. Providing optimal symptom relief and alleviation of suffering is the highest priority. However, evidence suggests that we continue to fall far short of this ideal (American Society of Clinical Oncology, 1996; Cassem, 1997; Cassel & Foley, 1999; Carver & Foley, 2000). Although pain management guidelines have been the most widely disseminated, we know that many patients continue to suffer not only from pain, but other troubling physical symptoms in their final days (American Nursing Association, 1991; Carr et al., 1994; American Pain Society, 1995; American Academy of Neurology, 1996; American Board of Internal Medicine, 1996; Ahmedzai, 1998). Despite clear advances in the identification and treatment of psychiatric disorders, we continue to underdiagnose and undertreat the debilitating symptoms of depression, anxiety, and delirium in the final stages of life (Carroll et al., 1993; Hirschfeld et al., 1997; Holland, 1997, 1998, 1999; Breitbart et al., 2000; Chochinov & Breitbart, 2000). And, beyond these physical and psychological symptoms, we fall even shorter of our goals of alleviating the spiritual, psychosocial, and existential suffering of the dying patient and family (Cherny & Portenoy, 1994; Cherny et al., 1996; Fitchett & Handzo, 1998; Karasu, 2000). And this is in spite of the ethical imperative “to comfort always” (Pellegrino, 2000).
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House, Taylor R., and Aaron Wightman. "Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD." Kidney360 2, no. 6 (April 7, 2021): 1063–71. http://dx.doi.org/10.34067/kid.0000282021.
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AbstractDespite continued advances in medical treatment, pediatric CKD remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death. These burdens underscore the need for integration of pediatric palliative care (PPC) into nephrology practice. PPC is an evolving field that strives to (1) relieve physical, psychologic, social, practical, and existential suffering; (2) improve quality of life; (3) facilitate decision making; and (4) assist with care coordination in children with life-threatening or life-shortening conditions. Integration of palliative care into routine care has already begun for adults with kidney disease and children with other chronic diseases; however, similar integration has not occurred in pediatric nephrology. This review serves to provide a comprehensive definition of PPC, highlight the unmet need in pediatric nephrology and current integration efforts, discuss the state of palliative care in adult nephrology and analogous chronic pediatric disease states, and introduce future opportunities for study.
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Salas, Barbara. "Crossing the River Styx: the power of music, spirituality and religion at the end of life." Music and Medicine 11, no. 4 (October 23, 2019): 226. http://dx.doi.org/10.47513/mmd.v11i4.700.
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Dying from a terminal illness involves a period of transition throughout which the person deals with multiple losses, including the loss of one’s own life. The awareness of death makes the individual confront spiritual questions that touch the very nature of existence, and music can help intensify that spiritual experience bringing new meaning to the end of life. The reasons why spirituality, religion and music can facilitate the existential quest for meaning and provide an overall improvement of the quality of life at the end of life will be explored, aiming to suggest that a humanist approach to end-of-life care in which alleviation of suffering and consideration of the specific needsof the patient including spiritual care and therapy with music would be desirable to help patients during the dying process.
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Best, Megan, Lynley Aldridge, Phyllis Butow, Ian Olver, Melanie Price, and Fleur Webster. "Assessment of spiritual suffering in the cancer context: A systematic literature review." Palliative and Supportive Care 13, no. 5 (November 11, 2014): 1335–61. http://dx.doi.org/10.1017/s1478951514001217.
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AbstractObjective:An important goal of cancer medicine is relief of patients' suffering. In view of the clinical challenges of identifying suffering patients, we sought to identify valid instruments for assessing the spiritual suffering of people diagnosed with cancer.Method:A systematic review of the literature was conducted in the Medline, Embase, the Cochrane Library, and PsycINFO databases seeking assessment instruments that measure either suffering or one of its synonyms or symptoms. The psychometric properties of the identified measures were compared.Results:A total of 90 articles were identified that supplied information about 58 measures. The constructs examined were: suffering, hopelessness/demoralization, hope, meaning, spiritual well-being, quality of life where a spiritual/existential dimension was included, distress in the palliative care setting and pain, distress or struggle of a spiritual nature. The Pictorial Representation of Illness and Self Measure (PRISM) (patient completed) was the most promising measure identified for measuring the burden of suffering caused by illness due to its ease of use and the inclusion of a subjective component.Significance of Results:Although the appropriateness of any measure for the assessment of spiritual suffering in cancer patients will depend on the context in which it is intended to be utilized, the PRISM is promising for measuring the burden of suffering due to illness.
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Häggström, Elisabeth, Ester Mbusa, and Barbro Wadensten. "Nurses' Workplace Distress and Ethical Dilemmas in Tanzanian Health Care." Nursing Ethics 15, no. 4 (July 2008): 478–91. http://dx.doi.org/10.1177/0969733008090519.
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The aim of this study was to describe Tanzanian nurses' meaning of and experiences with ethical dilemmas and workplace distress in different care settings. An open question guide was used and the study focused on the answers that 29 registered nurses supplied. The theme, `Tanzanian registered nurses' invisible and visible expressions about existential conditions in care', emerged from several subthemes as: suffering from (1) workplace distress; (2) ethical dilemmas; (3) trying to maintaining good quality nursing care; (4) lack of respect, appreciation and influence; and (5) a heavy workload that did not prevent registered nurses from struggling for better care for their patients. The analysis shows that, on a daily basis, nurses find themselves working on the edge of life and death, while they have few opportunities for doing anything about this situation. Nurses need professional guidance to gain insight and be able to reflect on their situations, so that they do not become overloaded with ethical dilemmas and workplace distress.
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Johansen, May-Lill, Knut Arne Holtedahl, Annette Sofie Davidsen, and Carl Edvard Rudebeck. "‘I deal with the small things’: The doctor–patient relationship and professional identity in GPs’ stories of cancer care." Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 16, no. 6 (March 7, 2012): 569–84. http://dx.doi.org/10.1177/1363459312438565.
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An important part of GPs’ work consists of attending to the everyday and existential conditions of human being. In these life world aspects, biomedicine is often not the relevant theory to guide the GP; nevertheless they are a part of GPs’ professional domain. In cancer care, previous studies have shown that GPs with a biomedical perspective on medicine could feel subordinate to specialists, and that doctors with a curative focus could see disease progression as a personal failure. The aim of this study was to explore in depth the experiences of being a GP for people with advanced cancer. Fourteen Norwegian GPs were interviewed about accompanying patients through a cancer illness. Their stories were analysed using a narrative approach. The GPs expressed a strong commitment to these patients, a loyalty which in some cases could be weakened due to judgements of distant specialists. In view of the GPs’ close knowledge of their patients’ background and history this subordination was a paradox, mirroring a hierarchy of medical knowledge. The GPs had an ideal of honesty and openness about death, which they sometimes failed. To reach the ideal of honesty, clinicians would have to abandon the biomedical ideal of mastering human nature through interventions and acknowledge the fundamental uncertainty and finiteness of human life. GPs may learn from being with their patients that bodily and existential suffering are connected, and thus learn implicitly to overlook the body–mind dualism. This practical wisdom lacks a theoretical anchoring, which is a problem not only for general practice.
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Latecki, B. "Client Versus Patient – The Clinical. Economical, Moral, Legal and Other Implications of a Choice." European Psychiatry 41, S1 (April 2017): S719. http://dx.doi.org/10.1016/j.eurpsy.2017.01.1295.
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The presentation discusses the overt and hidden meaning of the terms between “patient” or “client” regarding persons undergoing psychotherapy and implications of using these terms. Some historical and recent opinions and points of view are presented. As the outcome of the discussion, it is concluded that to weigh pros and cons and to decide on which name would be more appropriate, one must resort to taking into consideration the definitions of therapy, suffering, and healing. It is suggested that the criterium should be the level and nature of suffering experienced by the “taker” and the level and nature of care performed by the “giver” (provider). The relations between both parties are also discussed in terms of existential phenomenology–as opposed to dualistic approach – and holism versus atomism. It is the intention of the author to deliver some practical and not only theoretical contribution to clinical practice.Disclosure of interestThe author has not supplied his/her declaration of competing interest.
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Byrne, Catherine M., and Deidre D. Morgan. "Patterns of Religiosity, Death Anxiety, and Hope in a Population of Community-Dwelling Palliative Care Patients in New Zealand—What Gives Hope If Religion Can’t?" American Journal of Hospice and Palliative Medicine® 37, no. 5 (December 9, 2019): 377–84. http://dx.doi.org/10.1177/1049909119891148.
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This study examines the prevalence of religiosity, death anxiety, and hope in a sample of New Zealand community hospice patients in the last 6 months of life. It explores the factors triggering distress or hope and examines whether religiosity is protective against death anxiety for this population. Early studies showed religious faith helps relieve death anxiety, but later work suggests this may only be the case in societies which are generally religious. Very little research has been conducted on this topic in New Zealand, from which recent censuses indicate is an increasingly secular country. If religion is not an important source of hope for dying, it is important to explore what factors do help relieve existential anxiety and to consider their clinical relevance. This study confirmed that organized religion was not a major support factor. Yet several people who declared themselves nonreligious scored highly for intrinsic religiosity and were among the most hopeful participants. This could suggest that spirituality may be more relevant than organized religion in relieving existential distress. The main source of hope for most participants was joyful memories and meaningful relationships. Fear of being a burden and of causing family suffering were the most significant causes of distress. Systematic spiritual assessment for all patients, not just those with a declared religious faith, a biography service, and psychotherapy, may all have a role in managing death anxiety at the end of life. Further work with larger and more diverse populations would be needed to confirm these findings.
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Adorno, Gail. "Between Two Worlds." OMEGA - Journal of Death and Dying 71, no. 2 (March 10, 2015): 99–125. http://dx.doi.org/10.1177/0030222815570589.
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Disease-directed therapy near death is a growing trend among persons living with late-stage cancer. As a sociocultural phenomenon, cancer-directed therapy (e.g., chemotherapy) when given for very advanced disease is a process that offers questionable benefits and portends further suffering, but also suggests potential for growth and transcendence. Theories and concepts drawn from cultural anthropology, sociology, and existentialism illustrate how contextual factors contribute to the creation of a “liminal space”; the latter part of the cancer trajectory where living and dying can overlap. When applied to clinical practice, this theoretical framework gives the patient, family, and health care provider a way of “unmasking” a period of transition during terminal illness when aggressive disease-directed care continues to be provided. The liminal space may function as an existential plane; a gateway or threshold with inherent potential for psychospiritual development during the final stage of life.
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Schmidt, Andreas T. "Should We Extend Voluntary Euthanasia to Non-medical Cases? Solidarity and the Social Context of Elderly Suffering." Journal of Moral Philosophy 17, no. 2 (April 15, 2020): 129–62. http://dx.doi.org/10.1163/17455243-20192823.
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Several Dutch politicians have recently argued that medical voluntary euthanasia laws should be extended to include healthy elderly citizens who suffer from non-medical ‘existential suffering’ (‘life fatigue’ or ‘completed life’). In response, some seek to show that cases of medical euthanasia are morally permissible in ways that completed life euthanasia cases are not. I provide a different, societal perspective. I argue against assessing the permissibility of individual euthanasia cases in separation of their societal context and history. An appropriate justification of euthanasia needs to be embedded in a wider solidaristic response to the causes of suffering. By classifying some suffering as ‘medical’ and some as ‘non-medical’, most societies currently respond to medical conditions in importantly different ways than they do to non-medical suffering. In medical cases, countries like the Netherlands have a health care, health research and public health system to systematically assign responsibilities to address causes of medical suffering. We lack such a system for non-medical suffering among elderly citizens, which makes completed life euthanasia importantly different from euthanasia in medical cases. Because of this moral ‘responsibility gap’, focusing on the permissibility of completed life euthanasia in separation of wider societal duties to attend to possible causes is societally inappropriate. To spell out this objection in more philosophical terms, I introduce the concept of acts that are morally permissible but contextually problematic.
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Ho, Anita, Joshua S. Norman, Soodabeh Joolaee, Kristie Serota, Louise Twells, and Leeroy William. "How does Medical Assistance in Dying affect end-of-life care planning discussions? Experiences of Canadian multidisciplinary palliative care providers." Palliative Care and Social Practice 15 (January 2021): 263235242110459. http://dx.doi.org/10.1177/26323524211045996.
Full textAbstract:
Background: More than a dozen countries have now legalized some form of assisted dying, and additional jurisdictions are considering similar legislations or expanding eligibility criteria. Despite the persistent controversies about the relationship between medicine, palliative care, and assisted dying, many people are interested in assisted dying. Understanding how end-of-life care discussions between patients and specialist palliative care providers may be affected by such legislation can inform end-of-life care delivery in the evolving socio-cultural and legal environment. Aim: To explore how the Canadian Medical Assistance in Dying legislation affects end-of-life care discussions between patients and multidisciplinary specialist palliative care providers. Design: Qualitative thematic analysis of semi-structured interviews. Participants: Forty-eight specialist palliative care providers from Vancouver (n = 26) and Toronto ( n = 22) were interviewed in person or by phone. Participants included physicians ( n = 22), nurses ( n = 15), social workers ( n = 7), and allied health professionals ( n = 4). Results: Qualitative thematic analysis identified five notable considerations associated with Medical Assistance in Dying affecting end-of-life care discussions: (1) concerns over having proactive conversations about the desire to hasten death, (2) uncertainties regarding wish-to-die statements, (3) conversation complexities around procedural matters, (4) shifting discussions about suffering and quality of life, and (5) the need and challenges of promoting open-ended discussions. Conclusion: Medical Assistance in Dying challenges end-of-life care discussions and requires education and support for all concerned to enable compassionate health professional communication. It remains essential to address psychosocial and existential suffering in medicine, but also to provide timely palliative care to ensure suffering is addressed before it is deemed irremediable. Hence, clarification is required regarding assisted dying as an intervention of last resort. Furthermore, professional and institutional guidance needs to better support palliative care providers in maintaining their holistic standard of care.
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Rosengarten, Ora S., Yonat Lamed, Timna Zisling, Ayelet Feigin, and Jeremy M. Jacobs. "Palliative Sedation at Home." Journal of Palliative Care 25, no. 1 (March 2009): 5–11. http://dx.doi.org/10.1177/082585970902500102.
Full textAbstract:
A large number of dying patients receive palliative care at home, and although palliative sedation (PS) may be indicated, literature describing PS at home is scarce. This study is a retrospective description of PS delivered to terminal patients at home from December 2000 to March 2006. A total of 36 patients (with a median age of 65) received home PS. Cancer was the diagnosis for 35 patients, and most patients suffered more than one symptom — most commonly, intractable pain, followed by agitation and existential suffering. Drugs used included midazolam, morphine, haloperidol, fentanyl TTS, and promethazine. Median duration of sedation was three days; median time to symptom control was 24 hours. Good symptom control was achieved in 28 out of 36 patients, and 34 of the patients died at home. In conclusion, PS was a feasible and successful treatment option, improving the care of terminal patients whose preference is to die at home.