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This article presents the theoretical concept of language de-socialization, which refers to processes through which the declining linguistic and interactive capacities of an individual, as well as the loss of personhood as defined in a particular cultural setting, are managed in and through language. The article discusses de-socialization as an extension of a theoretical forebear, language socialization, which has been defined as “how young children and others become communicatively and culturally competent within their homes, educational institutions, and other discourse communities, both local and transnational, and how language (in its many varieties and modes) mediates that process”. However, language de-socialization is not simply the inverse of language socialization, because understanding language at the end of life requires expanded sensitivity to a range of topics that are not usually treated in linguistics, such as assumptions about abledness and impairment that underpin determinations of linguistic and communicative competence.
This study aimed to examine the extent to which mindfulness, self-compassion, and body image distress are associated with peaceful acceptance or struggle with illness in terminally ill cancer patients, after controlling for psychological distress, sociodemographic characteristics (age, gender, education, marital status), and clinical characteristics (body mass index, Karnofsky Performance Status, time since diagnosis).
Methods
A cross-sectional study was conducted with 135 terminally ill cancer patients. Participants were consecutively sampled. Two five-step hierarchical regression models were performed, one for peaceful acceptance and the other for struggle with illness. The models included sociodemographic (step 1), clinical characteristics (step 2), psychological distress (step 3), mindfulness and self-compassion (step 4), and body image distress (step 5).
Results
Body image distress was negatively associated with peaceful acceptance after controlling for the other variables. Both body image distress and self-compassion were uniquely associated with struggle with illness, in a positive and negative direction, respectively. The overall models explained 33% of the variance in peaceful acceptance and 61% in struggle with illness.
Significance of results
Targeting body image distress may be important for both enhancing peaceful acceptance and reducing struggle with one’s terminal condition. Addressing self-compassion, however, may help patients alleviate the struggle alone. These findings suggest that peaceful acceptance and struggle with illness may follow different clinical pathways with partly different underlying mechanisms. This study provides a foundation for future research to develop interventions for body image and self-compassion specifically tailored to the needs of terminally ill cancer patients.
Sleep problems are common in palliative care patients. In addition, psychological problems can affect sleep quality. The aim of this study was to investigate sleep quality, anxiety, and depression in palliative care patients.
Methods
The study was conducted between May 1, 2023 and October 31, 2023 in Turkey. The patient information form, the Pittsburgh Sleep Quality Index (PSQI), and the Hospital Anxiety and Depression Scale (HADS) were used to collect data. The data were analyzed using the Pearson correlation and multiple linear regression test.
Results
A total of 59.3% of patients were male, 76.7% were married, 89.3% had poor sleep quality, 61.3% had anxiety, and 86.7% were at risk of depression. A positive moderate correlation was found between HADS-anxiety, HADS-depression, and HADS total with subjective sleep quality. A positive moderate correlation was found between HADS-anxiety, HADS depression, and HADS total with the PSQI total. Sleep latency, sleep duration, sleep disturbances, use of sleep medication, and daytime dysfunction showed a weak positive correlation with HADS-depression and HADS total. In the regression analysis, anxiety proved to be a statistically significant predictor of sleep quality, while depression was not a significant predictor. These variables were found to explain 22% of the total variance in sleep quality.
Significance of results
The patients’ sleep quality was poor. Anxiety and the risk of depression were high. A positive moderate correlation was found between the total score of sleep quality and anxiety and depression. Anxiety was found to be a statistically significant predictor of sleep quality.
To explore the potential of incorporating personally meaningful rituals as a spiritual resource for Western secular palliative care settings. Spiritual care is recognized as critical to palliative care; however, comprehensive interventions are lacking. In postmodern societies, the decline of organized religion has left many people identifying as “no religion” or “spiritual but not religious.” To assess if ritual could provide appropriate and ethical spiritual care for this growing demographic requires comprehensive understanding of the spiritual state and needs of the secular individual in postmodern society, as well as a theoretical understanding of the elements and mechanisms of ritual. The aim of this paper is to provide a comprehensive and theoretically informed exploration of these elements through a critical engagement with heterogeneous literatures.
Methods
A hermeneutic narrative review, inspired by complexity theory, underpinned by a view of understanding of spiritual needs as a complex mind–body phenomenon embedded in sociohistorical context.
Results
This narrative review highlights a fundamental spiritual need in postmodern post-Christian secularism as need for embodied spiritual experience. The historical attrition of ritual in Western culture parallels loss of embodied spiritual experience. Ritual as a mind–body practice can provide an embodied spiritual resource. The origin of ritual is identified as evolutionary adaptive ritualized behaviors universally observed in animals and humans which develop emotional regulation and conceptual cognition. Innate human behaviors of creativity, play, and communication develop ritual. Mechanisms of ritual allow for connection to others as well as to the sacred and transcendent.
Significance of results
Natural and innate behaviors of humans can be used to create rituals for personally meaningful spiritual resources. Understanding the physical properties and mechanisms of ritual making allows anyone to build their own spiritual resources without need of relying on experts or institutionalized programs. This can provide a self-empowering, client-centered intervention for spiritual care.
This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the quality and effectiveness of care provided. Our goals included exploring emotional, social, and practical caregiving dimensions within the PPC context to address gaps and find areas for improvement. The objectives encompassed an exploration of the perceived effects on physical, emotional, social, and spiritual dimensions, an investigation into pre-PPC inclusion experiences, and an identification of limitations and potential areas for enhancement within the program.
Methods
Using a qualitative descriptive approach with a phenomenological lens, we engaged 6 primary caregivers through semi-structured interviews, employing theoretical convenience sampling. Analysis involved meticulous transcription, alphanumeric coding, and thematic categorization using Atlas.ti 8.0® software.
Results
Consistently echoed across interviews were the positive impacts on family dynamics, characterized by a sense of tranquility, enhanced patient care, and substantial caregiver support. Emotional well-being improvements were marked by elevated mood, reduced anxiety, and a restored sense of normalcy. Noteworthy challenges identified encompassed communication gaps among health-care professionals, limited-service availability, and perceived constraints in home care.
Significance of results
The study underscores the profound positive influence of the PPC program on the perceived quality of life for families navigating the complexities of caring for children with life-limiting illnesses. The findings underscore the paramount importance of holistic, family-centric care and underscore the imperative to address caregiver needs comprehensively to mitigate the risk of burnout. The identified challenges serve as signposts for refining communication strategies, expanding service provisions, and augmenting support structures within the PPC program. Overall, the study highlights the profound positive impact of the PPC program on family well-being, while also identifying areas for program enhancement, particularly in communication and service availability.
The primary care provider is often the first clinician to recognize the high burden of life-prolonging treatment for a resident who has limited life expectancy and high medical and neurocognitive comorbidity. Palliative care refers to specialized medical care provided to individuals with serious illnesses or conditions that are not curable. The goal of palliative care is to improve the quality of life for patients by alleviating symptoms, managing pain, and addressing the physical, emotional, social, and spiritual needs associated with their condition. Clinical depression is relatively common at the end of life. The prevalence of major depressive disorder at the end of life for cancer patients is estimated to be between 5-20%. Choose psychotropic medications that have a quicker response time when possible. Examples include stimulants for depressive symptoms and benzodiazepines for anxiety. SSRI’s, SNRI’s, and other more commonly prescribed medications for depression and anxiety may take up to four to six weeks for clinical response.
Older adults often have a heightened awareness of death due to personal losses. In many low- and middle-income countries, including Nigeria, conversation about end-of-life issues and advanced care planning (ACP) among older adults is gradually emerging. Our study explored older adults’ knowledge and perceptions towards advanced directives and end-of-life issues in a geriatric care setting in Nigeria.
Methods
A cross-sectional study was conducted among older adults (aged ≥60 years) in a geriatric outpatient clinic. Data were collected using an interviewer-administered, semi-structured questionnaire, tested at a significance level set at alpha 0.05.
Results
The study included 204 participants with a mean age of 71.3 ± 7.2 years, predominantly female (67.2%). Few of the participants have heard about end of life (20.1%), living will (19.1%), power of attorney (19.6%), and ACP (25.9%). About 29.9% of the respondents considered having a living will, of which about 34.4% have written one. Only 23 (11.3%) would consider discussing ACP in the future, 32 (15.7%) would discuss place of care, and 30 (14.7%) place of death. Preparedness for end of life and knowledge of ACP was higher among males, those with formal education, and those with good self-rated health (p < 0.05).
Significance of results
The study highlighted gap in awareness and engagement in ACP among older adults in a country like Nigeria. This lack of knowledge can lead to inadequate end-of-life care and unpreparedness for critical health decisions for older adults in Africa. Thus, improving awareness and understanding of ACP can empower older adults, ensuring their end-of-life preferences are respected, enhancing the quality of care, and reducing the emotional and financial burden on families.
Many bioethicists have recently shifted from using “physician-assisted suicide” (PAS) to “medical aid-in-dying” (MAID) to refer to the act of voluntarily hastening one’s death with the assistance of a medical provider. This shift was made to obscure the practice’s connection to “suicide.” However, as the charge of “suicide” is fundamental to arguments against the practice, “MAID” can only be used by its proponents. The result has been the fragmentation of the bioethical debate. By highlighting the role of human agency—as opposed to natural processes—in causing death, the term “PAS” makes it easier both to perceive potential risks to vulnerable populations and to affirm suicide as a potentially autonomous choice. As such, “PAS” thus more transparently expresses the arguments of both supporters and opponents of the “right to die,” while avoiding the unnecessary stigmatization of suicide and suicidal people which is a result of the usage of “MAID.”
This case highlights the limitations of current prognostication and communication in clinical practice.
Methods
We report a case of a 50 year old patient with metastatic melanoma following admission to intensive care unit and later transferred to palliative care unit for end-of-life care.
Results
The patient had clinical improvement despite signs of predictors of death and was later transferred back to care of oncology team.
Significance of results
Physicians frequently overestimate or underestimate survival time which can be distressing to patients and families. There is need for further research to improve the accuracy of these tools for the sake of our patients and their families.
While most clinicians have experience discussing resuscitation, talking about dying requires the patient and family be willing to think about the medical treatment not working. Clinicians hesitate to bring up dying because they worry it will raise strong emotions, and they’re not sure what to do. Like REMAP, discussing code status requires a shared understanding of the “big picture”, responding to emotions, eliciting values, and making a recommendation about code status based on the medical reality and the individual patient’s values even if they differ from our own. The frame of “hope for the best, prepare for the worst” may help with the discussion. As people near the end of life, there are often questions that are hard for patients and families to ask, like what dying looks like, issues brought up by trauma or stigma, spiritual or existential concerns, or when the dying process is longer than anticipated. When clinicians create space for these sorts of concerns, we can address uncertainty and suffering that would have otherwise gone unspoken. Finally, being able to say goodbye to a patient requires insight and skill, but can be deeply meaningful for all involved.
The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts.
Methods
In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist. The scoping review is reported using the PRISMA checklist for scoping reviews. We used a data charting form to deductively extract data from the selected articles and then mapped data into 4 themes related to our research questions: how authors describe and employ the concept of patient altruism; expressions of patient altruism; consequences of patients’ altruistic acts; and possible interventions fostering patient altruism.
Results
Excluding duplicates, 2893 articles were retrieved; 33 were included in the final review. Altruism was generally considered as an act or intention oriented toward the benefit of a specific (known) or non-specific (generic) recipient. Patients expressed altruism through care and support, decisions to withhold treatment or actively hasten death, and engagement in advance care planning. Consequences of altruism were categorized in patient-centered (contribution to meaning in life and quality of life), non-patient-centered (leaving a positive impact and saving money), and negative consequences (generating feelings of guilt, exposing individuals with low self-esteem). Interventions to encourage altruism comprised specific interventions, providing opportunities to plan for future care, and recognizing and respecting the patients’ altruistic motivations.
Significance of results
We identified heterogeneous and limited research conceptualization of patient altruism and its operationalization in palliative care settings. A deeper conceptual, empirical, and theoretical exploration of patient altruism in EOL is necessary.
To investigate the impact of early vs. late palliative care (PC) on the frequency of admissions to acute hospital settings and the utilization of end-of-life (EoL) interventions in cancer decedents.
Methods
In this single-center, cross-sectional study, we examined the frequency of intensive care unit (ICU) and emergency department (ED) admissions among adult cancer decedents between 2018 and 2022 in a referral hospital in México. Additionally, we assessed EoL medical interventions, categorizing patients into 3 groups: those who received early PC (EPC), late PC (LPC), and those who did not receive PC (NPC).
Results
We analyzed data from 1762 patients, averaging 56 ± 16.3 years old, with a predominant representation of women (56.8%). PC was administered to 45.2% of patients, but EPC was limited to only 12.3%. The median time from the initiation of PC to death was 5 days (interquartile range: 2.0–31.5). Hematological malignancies were the most prevalent, affecting 21.5% of patients. EPC recipients demonstrated notable reductions in ICU and ED admissions, as well as diminished utilization of chemotherapy, radiotherapy (RT), antibiotics, blood transfusions, and surgery when compared to both LPC and NPC groups. EPC also exhibited fewer medical interventions in the last 14 days of life, except for RT.
Significance of results
The findings of this study indicate that a significant proportion of EoL cancer patients receive PC; however, few receive EPC, emphasizing the need to improve accessibility to these services. Moreover, the results underscore the importance of thoughtful deliberation regarding the application of EoL medical interventions in cancer patients.
In Chochinov’s dignity model, living in the here and now (mindful living) is explicitly stated as a dignity-conserving practice. However, what facilitates mindful living remain unclear. This study aims to investigate the mechanisms of mindful living among Asian terminally ill patients.
Methods
This interpretative phenomenological analysis comprised patients aged 50 and above with a prognosis of less than 12 months. Fifty interview transcripts from a larger Family Dignity Intervention study conducted in Singapore were used for the analysis.
Results
Findings revealed 12 themes that were organized into 3 axioms of mindful living for dignified dying: (a) purposive self-awareness, (b) family-centered attention, and (c) attitudes of mortality acceptance. Through purposive self-awareness, patients introspected their lived experience with illness and anticipated death to find resilience and contentment. Patients’ conscious family-centered attention revolved around their relationships, achievements, and legacy within the family, leading to a deepened sense of interconnectedness with self and beloved others at life’s end. Lastly, patients adopted nonjudgmental attitudes of mortality acceptance as they made necessary arrangements in preparation for their death, allowing them to treasure every living moment and obtain a closure in life. An empirical model of mindful living for dignified dying was developed based on these emerging themes, illustrating the interweaving of intention, attention, and attitude for facilitating meaningful living in the face of mortality.
Significance of results
Mindful living is a dignity-preserving practice, which helps terminally ill patients to find tranquility in each present moment despite their impending death. The identified mechanisms of mindful living lay important groundwork for a new understanding and possible directions for culture-specific, mindfulness-based, family-centered interventions suited to terminally ill patients in the Asian context.
Individuals with advanced cancer face the challenge of living meaningfully while also preparing for end of life. The ability to sustain this duality, called “double awareness,” may reflect optimal psychological adaptation, but no psychometric scale exists to measure this construct.
Objectives
The purpose of this study was to develop a novel scale to measure double awareness in patients living with advanced cancer.
Methods
Guided by best practices for scale development, this study addresses the first three of nine steps in instrument development, including domain clarification and item generation, establishment of content validity of the items, and pre-testing of the items with patients.
Results
Instrument development resulted in a 41-item measure with two dimensions titled “life engagement” and “death contemplation.” Items retained in the measure displayed face validity and were found to be both acceptable by patients and relevant to their lived experience.
Significance of results
The results of this scale development study will allow for full validation of the measure and future use in clinical and research settings. This novel measure of double awareness will have clinical utility and relevance in a variety of settings where patients with advanced cancer are treated.
Palliative medicine focuses on maximizing the quality of life of patients with serious illnesses. For many patients in the critical care setting, the best medical treatments and technologies are unable to reverse advanced disease processes, as evidenced by the fact that 20% of Americans died in or after ICU care. Even when treatments can prolong life, they may not ultimately allow patients to achieve a quality of life acceptable to them. Functional and cognitive independence are highly valued by patients and yet most chronically, critically ill patients never live independently again. Honest, transparent, empathetic communication is the cornerstone of determining how to deliver effective, patient-centered medical care for these patients.
Existential/spiritual questions often arise when a person suffers from a serious and/or life-threatening illness. “Existential” can be seen as a broad inclusive term for issues surrounding people’s experience and way of thinking about life. To be able to meet patients’ existential needs, knowledge is needed about what the existential dimension includes. The aim of this study was to investigate how professionals caring for people with life-threatening disease perceive the existential dimension of care.
Methods
This study is based on a mixed method design utilizing a digital survey with open- and closed-ended questions. Descriptive statistics were applied to closed-ended questions and a qualitative descriptive approach was used for the responses to the open-ended questions. Healthcare professionals at specialized palliative care units, an oncology clinic and municipal healthcare within home care and a nursing home in Sweden answered the survey.
Results
Responses from 77 professionals expressed a broad perspective on existential questions such as thoughts about life and death. Identifying existential needs and performing existential care was considered a matter of attitude and responsiveness and thus a possible task for any professional. Existential needs centered around the opportunity to communicate, share thoughts and experiences, and be seen and heard. Existential care was connected to communication, sharing moments in the present without doing anything and was sometimes described as embedded in professionals’ ordinary care interventions. The existential dimension was considered important by the majority of respondents.
Significance of results
This study indicates that with the right attitude and responsiveness, all professionals can potentially contribute to existential care, and that existential care can be embedded in all care. The existential dimension of care can also be considered very important by health professionals in a country that is considered secular.
Our friend, colleague, and coauthor Dr. Steven Southwick passed away on April 20, 2022. In this epilogue devoted to his memory, we share Dr. Southwick's writings in the last months of his life focused on how he lived the very resilience factors that he spent decades studying. Steve's friends, family, and treating physicians share the impact he had on them as he connected to love and friendship, meaning, physical activity, and cognitive flexibility. In closing the chapter Dr. Southwick says of resilience: “Do the best you can with what you've got.
Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams.
Methods
Ambispective study with the participation of 14 PPCT working in Spain.
Results
From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years’ experience (66.7% vs. 45.5%, p = 0.018).
Significance of results
PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.
Many patients with advanced cancer identify home as being their preferred place of death. A critical component in achieving a home death is the support of family members, who often take on responsibilities for which they feel insufficiently prepared with subsequent impacts upon their health and well-being.
Objectives
This study sought to review existing qualitative literature on family carers’ experiences in providing end-of-life care at home for patients with advanced cancer, with an emphasis on exploring factors that influence how prepared they feel for their role.
Methods
A narrative review was chosen to provide an overview and analysis of qualitative findings. MEDLINE, PubMed, PsychINFO, and EMBASE databases were searched with the following search terms: “Cancer,” “Caregiver,” “End of Life Care,” “Home,” and “Qualitative.” Inclusion criteria were as follows: English language, empirical studies, adult carers, and articles published between 2011 and 2021. Data were abstracted, and study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative research.
Results
Fourteen relevant articles were included. Three overarching themes reflecting the factors influencing family preparedness for their role were identified: “motivations for providing care,” “interactions with health-care professionals,” and “changes during the caring process.”
Significance of results
Inadequate preparation of family carers is apparent with regard to their role in providing end-of-life care at home for patients with advanced cancer. There is a need for health-care workers to more effectively identify the information and support needs of families, and utilize evidence-based strategies that have emerged to address these needs.