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The diagnosis of an advanced life-threatening illness brings with it existential challenges that activate the attachment system and different attachment styles influence coping with advanced illness.
Objectives
The objective of this work were (a) to analyze the influence of attachment styles of patients with advanced disease and their relatives on emotional distress and other psychological and existential aspects, and (b) to identify the most used assessment instruments to measure it, highlighting those with better psychometric properties in palliative care contexts.
Methods
Articles on attachment published from October 2005 to February 2025 using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guide (PRISMA) were identified by searching PubMed, PsycINFO, Google Scholar, SCOPUS, Dialnet, and the Web of Science databases.
Results
Of 1847 studies identified, 24 were included (21 quantitative and 53 qualitative). Quality assessment revealed low risk of bias and high methodological quality. The main results indicated that a secure attachment style was associated with better coping, adaptation and adjustment strategies to the experience of illness, causing a buffering effect on suffering at the end of life. In contrast, patients with insecure attachment styles presented higher levels of emotional distress, demoralization, existential loneliness, death anxiety and showed a poorer psychological adaptation to cancer. Almost two-thirds of the studies (65.1%) used some version of Experiences in Close Relationships (ECR) scale.
Significance of results
The attachment theory appears to offer a valuable conceptual framework for understanding how individuals may respond to the emotional and relational demands associated with advanced illness and end-of-life care. Its contributions have been increasingly considered in literature addressing psychosocial adjustment and coping in palliative contexts
For the assessment of attachment styles in a palliative context, the most used instrument is the original ECR-M16 scale or its iderived versions.
People use advance directives to express preferences that direct their future care when they lack decision-making capacity. One form of advance directive, a “dementia directive,” records preferences about living in various stages of dementia. This is important because many Americans want to avoid living with advanced progressive dementia. Unfortunately, traditional advance directives cannot dependably achieve this goal. In contrast, some dementia directives can achieve this goal, by directing cessation of manually assisted feeding and drinking.
While many dementia directives have been published, most have gaps and omissions that thwart the goal of avoiding extended intolerable life in advanced dementia. To overcome these problems, we formulated a new dementia directive. This article explains the value of this new directive. We proceed in six stages. First, we review the prevalence of advanced dementia. Second, we identify the disadvantages of another option for accomplishing the goal of not living into advanced dementia, preemptive VSED. Third, we distinguish notable court cases where dementia directives were unsuccessful. Fourth, we review nine prominent dementia directives, noting how the Northwest Justice Project’s Advance Directive for VSED remedies those shortcomings. Fifth, we review this directive’s legal status. Sixth, we articulate its ethical justification.
The concept of total suffering is widely recognized in palliative care (PC), encompassing a range of interconnected and complex factors that collectively shape the evolving and individualized experience of a patient’s illness journey. Studies on will to live (WtL) in terminally ill patients have demonstrated its variability over time and various factors that influence these changes.
Methods
To objectively investigate the concept of total suffering and WtL; including their fluctuation over time and associations with sociodemographic, clinical, physical, and psychological symptoms in a sample of individuals with life-limiting conditions receiving PC. This multicenter Iberian study involved 3 centers in Portugal and 1 in Spain. A total of 107 individuals with life-limiting conditions consented to participate. To capture the dynamic and multifaceted components of total suffering, we had each participant completed the Edmonton Symptom Assessment Scale (ESAS) along an additional WtL visual analogue once daily over a 30-day period.
Results
WtL demonstrated various patterns over time. While some patterns reflected relative stability, other demonstrated substantive fluctuation during the course of illness. Significant correlations were observed between WtL and all other ESAS items. Moderate positive correlations were found between WtL and total ESAS score and its physical and psychological sub-scores. Spearman’s correlation coefficients between all physical and psychosocial items on the ESAS were statistically significant across all 45 correlations performed, with only 5 showing moderate strength; the remaining correlations were weaker.
Significance of results
Evidence-based understanding of WtL is critical to improving care for patients who experience suffering toward end-of-life and their families. Further research is needed to inform and refine interventions targeting total suffering.
Dementia has certain features relevant to values-based medicine. It is a progressive condition, so that a person’s choices and preferences may change over time, and they may require increasing input from others over time. Furthermore, our perceptions of diseases like Alzheimer’s, which cause dementia, are changing over time, along with the philosophy of care. Although memory impairment is the commonest presenting feature of dementia, it is by no means the only issue that arises during the course of the condition. This chapter examines four broad themes in the dementia pathway: early dementia; changes in behaviour; legal and ethical issues; and advanced dementia and care. Vignettes are used to discuss some of the typical issues that arise in clinical situations and how these can be addressed through the application of both evidence- and values-based practice.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author describes a case involving multiple interactions between a patient’s family and the healthcare team surrounding "futile" therapy. Each new team believes that the family does not understand and tries to educate them, leading to exhaustion and lack of trust all around. The case demonstrates the complexity that arises in communication in the current healthcare system.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author discusses a dying patient’s adult children in disagreement about a care plan. The issue of when home herbal remedies can be provided for a patient was central to the discussion. In addition, the ethics consultant had family members see a counselor to attempt to resolve their dispute, which is not a common approach.
This study aimed to explore what is important for hospice providers to know when a seriously ill parent has adolescent children.
Methods
The sample included 18 young adults (18–28 years old) whose parents died in hospice or palliative care while they were adolescents (12–18 years old). Semi-structured interviews were conducted virtually via Microsoft Teams. The interviews were audiotaped, transcribed verbatim, and analyzed using a thematic analysis. Themes emerged from the data and were determined by consensus.
Results
The participants described a variety of skills that are important for hospice providers to know. They provided specific suggestions for hospice providers who seek to help adolescents navigate this critical time when their parents are dying or have recently died.
Significance of results
These results can also be used to inform the development of interventions that assist hospice providers with strategies tailored to an adolescent’s specific needs. Future research should investigate these topics with a larger, more diverse sample.
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.