End of life care and the approach of death.
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801 to 825 of 969Difficult but necessary conversations--the case for advance care planning.
Many patients at the end of life receive care that is inappropriate or futile and, if given the opportunity to discuss their care preferences well ahead of death, may well have chosen to forgo such care. Advance care planning (ACP) is a process of making decisions about future health care for patients in consultation with clinicians, family members and important others, and to safeguard such decisions if patients were to lose decisional capacity. Although ACP has existed as an idea for decades, acceptance and operationalisation of ACP within routine practice has been slow, despite evidence of its benefits. The chief barriers have been social and personal taboos about discussing the dying process, avoidance by medical professionals of responsibility for initiating, coordinating and documenting discussions about ACP, absence of robust and standardised procedures for recording and retrievin…
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Family relationships and advance care planning: do supportive and critical relations encourage or hinder planning?
Objectives: The effectiveness of advance care planning (ACP) may depend on family members' understanding of patient preferences. However, we know of no studies that explore the association between family relationship dynamics and ACP. ACP includes a living will, durable power of attorney for health care (DPAHC) appointment, and discussions. We evaluated the effects of three aspects of family relations--general family functioning, support and criticism from spouse, and support and criticism from children--on both overall ACP and specific DPAHC designations.
Method: Using multinomial logistic regression models and data from a sample of 293 older adults, we estimated the effects of family relationship quality on the likelihood of completing ACP and appointing a spouse or adult child as DPAHC. Analyses controlled for demographic and health characteristics.
Results: Better overall family func…
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Allowing adolescents and young adults to plan their end-of-life care.
Objective: The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young adults (AYAs) living with a serious illness.
Methods: Fifty-two participants (age 16-28) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) were presented pages randomly from My Thoughts, My Wishes, My Voice and, Five Wishes, and asked to rank 25 items on several factors, including how likely they would be to complete each statement. Participant opinion on suggested changes in content, design, format, and style was obtained and resulted in development of a new document.
Results: AYAs living with a life-threatening illness want to be able to choos…
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A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure.
Background: Patients with severe COPD or chronic heart failure (CHF) are often confronted with decisions concerning life-sustaining treatments. The aim of this prospective, observational study was to assess life-sustaining treatment preferences, advance care planning, and the quality of end-of-life care communication in Dutch outpatients with clinically stable but severe COPD or CHF.
Methods: The following outcomes were assessed in outpatients with severe COPD (n = 105) or CHF (n = 80): life-sustaining treatment preferences (CPR and mechanical ventilation; Willingness to Accept Life-sustaining Treatment instrument), advance care planning, and quality of end-of-life care communication (Quality of Communication questionnaire).
Results: Most patients asserted that in their current health status, they would prefer CPR (COPD, 70.5%; CHF, 62.5%) and/or mechanical ventilation (COPD, 70.5%; CHF,…
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Redefining the "planning" in advance care planning: preparing for end-of-life decision making.
The traditional objective of advance care planning has been to have patients make treatment decisions in advance so that clinicians can attempt to provide care consistent with their goals. The authors contend that the objective for advance care planning ought to be the preparation of patients and surrogates to participate with clinicians in making the best possible in-the-moment medical decisions. They provide practical steps for clinicians to help patients and surrogate decision makers achieve this objective in the outpatient setting. Preparation for in-the-moment decision making shifts the focus from having patients make premature decisions based on incomplete information to preparing them and their surrogates for the types of decisions and conflicts they may encounter when they do have to make in-the-moment decisions. Advance directives, although important, are just one piece of infor…
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Prince-Paul M (2008)MEDLINE-indexed journal, not yet read by usJournal of palliative medicine40 citations Relationships among communicative acts, social well-being, and spiritual well-being on the quality of life at the end of life in patients with cancer enrolled in hospice.
Background: The importance of communication in close, personal relationships has been well-documented. At the end of life, communication, social relationships, and spirituality seem to have greater importance. Some studies suggest that the quality of life at the end of life (QOLEOL) involves these components.
Objective: The primary aim of this study was to investigate the communicative acts of love, gratitude, and forgiveness, and to explore the extent to which the communicative acts, social well-being, and spiritual well-being predict the overall QOLEOL when controlling for physical symptoms.
Design: Cross-sectional, descriptive, correlational design.
Setting/subjects: A convenience sample of all adult hospice patients, aged 35-80, with a cancer diagnosis, residing in their private home in a community setting, was recruited from a large, non-profit hospice program in the midwestern Unit…
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Carr D, Khodyakov D (2007)MEDLINE-indexed journal, not yet read by usThe journals of gerontology. Series B, Psychological sciences and social sciences114 citations End-of-life health care planning among young-old adults: an assessment of psychosocial influences.
Objectives: End-of-life planning among healthy older adults may protect them from unwanted medical treatments in later life, in the event that they become incapable of making health care decisions for themselves. We explore two formal and one informal components of end-of-life planning (living will, durable power of attorney for health care, and discussions) and assess whether one's health and health care encounters, personal beliefs, and experience with others' deaths affect these practices.
Methods: Using two waves of data (1992-1993 and 2004) from the Wisconsin Longitudinal Study, we estimated binary and multinomial logistic regression models to predict end-of-life preparations among a sample of community-dwelling persons aged 64-65 (N=3,838).
Results: Recent hospitalizations, personal beliefs (Death Avoidance and the belief that doctors should control health care decisions), and rece…
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Patterns of social, psychological, and spiritual decline toward the end of life in lung cancer and heart failure.
Typical trajectories of physical decline have been described for people with end-stage disease. It is possible that social, psychological, and spiritual levels of distress may also follow characteristic patterns. We sought to identify and compare changes in the psychological, social, and spiritual needs of people with end-stage disease during their last year of life by synthesizing data from two longitudinal, qualitative, in-depth interview studies investigating the experiences and needs of people with advanced illnesses. The subjects were 48 patients with advanced lung cancer (n=24) and heart failure (n=24) who gave a total of 112 in-depth interviews. Data were analyzed within individual case studies and then cross-sectionally according to the stage of physical illness. Characteristic social, psychological, and spiritual end-of-life trajectories were discernible. In lung cancer, the soc…
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Feeling like a burden: exploring the perspectives of patients at the end of life.
The issue of caregiver burden within the context of end-of-life care has received considerable attention. Less focus has been directed at the corresponding issue of care recipients' perceptions of being a burden to others, referred to as "self-perceived burden". The purpose of this interpretative phenomenological study was to gain a better understanding of self-perceived burden from the patient's perspective. Fifteen patients (ten women, five men) from Ottawa, Canada, receiving palliative care for advanced cancer were interviewed. Participants' experiences of self-perceived burden were reflected in two major interrelated categories. "Concern for Others" included the physical, social, and emotional hardships participants believed they were creating for others, as well as concerns about the future and likely effect of their death on those around them. "Implications for Self" reflected feel…
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Hope and advance care planning in patients with end stage renal disease: qualitative interview study.
Objective: To understand hope in the context of advance care planning from the perspective of patients with end stage renal disease.
Design: Qualitative in-depth interview study.
Setting: Outpatient department of a university affiliated nephrology programme.
Participants: 19 patients with end stage renal disease purposively selected from the renal insufficiency, haemodialysis, and peritoneal dialysis clinics.
Results: Patients' hopes were highly individualised and were shaped by personal values. They reflected a preoccupation with their daily lives. Participants identified hope as central to the process of advance care planning in that hope helped them to determine future goals of care and provided insight into the perceived benefits of advance care planning and their willingness to engage in end of life discussions. More information earlier in the course of the illness focusing on the i…
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Davison SN (2006)MEDLINE-indexed journal, not yet read by usClinical journal of the American Society of Nephrology : CJASN131 citations Facilitating advance care planning for patients with end-stage renal disease: the patient perspective.
Comprehensive care of patients with ESRD requires expertise in advance care planning (ACP), including attention to ethical, psychosocial, and spiritual issues related to starting, continuing, withholding, and stopping dialysis. However, there are no standards of care regarding when to initiate or how to facilitate ACP. The purpose of this study was to determine the perspectives of patients with ESRD of the salient elements of ACP discussions. An ethnographic, qualitative, in-depth interview study was conducted of outpatients of a university-affiliated nephrology program. Twenty-four patients with ESRD were purposively selected from the renal insufficiency, hemodialysis, and peritoneal dialysis clinics. Establishing patient "buy-in" by identifying perceived benefits of ACP along with acknowledging patients' sense of personal empowerment were critical both for the effective framing of faci…
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Micromanaging death: process preferences, values, and goals in end-of-life medical decision making.
Purpose: This study examined patients' and surrogates' attitudes about using advance directives to manage end-of-life medical care. It also explored process preferences, or how patients want decisions to be made.
Design and methods: Data come from the third wave of the Advance Directives, Values Assessment, and Communication Enhancement project, a longitudinal study designed to investigate psychological assumptions underlying the use of advance directives. Three-hundred thirty-seven outpatients aged 65 and older and their designated surrogate decision makers completed interviews and questionnaires.
Results: Very few individuals wished to document specific medical treatment preferences and mandate that they be followed, without exception, near death. Most desired to express more general preferences, such as values and goals for care, in addition to (or, instead of) specific treatment pref…
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Attitudes of patients with incurable cancer toward medical treatment in the last phase of life.
Purpose: When cancer has advanced to a stage in which cure becomes unlikely, patients may have to consider the aim of further treatment. We studied the relationship of patients' attitudes toward treatment with advance care planning and the development of these attitudes after diagnosis of incurable cancer.
Patients and methods: Patients with incurable cancer were interviewed and asked to fill out a written questionnaire about their attitudes concerning life-prolonging treatment and end-of-life decision making. These questions were repeated after 6 and 12 months.
Results: One hundred twenty-two patients (mean age, 64 years; standard deviation, 10.5 years; 53% women) participated in the study. Patients' attitudes toward treatment could be categorized into the following three different profiles: striving for quality of life, striving for length of life, and no clear preference. Patients who…
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Self-Transcendence: Association with Spirituality in an Italian Sample of Terminal Cancer Patients.
Terminally ill cancer patients often experience demoralization and loss of dignity, which undermines their spiritual wellbeing, which could, however, be supported by the presence of other factors such as self-transcendence and religious coping strategies. To assess self-transcendence and religious coping strategies and how they influence spirituality, we studied 141 end-stage cancer patients (64.3% male; mean age 68.6 ± 14.6) with a Karnofsky Performance Status ≤ 50 and a life expectancy ≤ 4 months using the Self-Transcendence Scale, the Demoralization Scale, the Functional Assessment of Chronic Illness Therapy-Spiritual Wellbeing (FACIT-Sp-12), the Brief Religious COPE, and the Patient Dignity Inventory. To understand the effects of these variables on spirituality, hierarchical multiple regression was performed on FACIT-Sp-12. The final model predicted 67% of the variance in spiritual w…
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Fur‐Hsing Wen; Wen‐Chi Chou; Ming‐Mo Hou and 3 others (2021)MEDLINE-indexed journal, not yet read by usPsycho-Oncology25 citations
Associations of death‐preparedness states with bereavement outcomes for family caregivers of terminally ill cancer patients
OBJECTIVE: Death preparedness involves cognitive prognostic awareness and emotional acceptance of a relative's death. Effects of retrospectively assessed cognitive prognostic awareness and emotional preparedness for patient death have been individually investigated among bereaved family caregivers. We aimed to prospectively examine associations of caregivers' death-preparedness states, determined by conjoint cognitive prognostic awareness and emotional preparedness for death, with bereavement outcomes. METHODS: Associations of caregivers' death-preparedness states (no-death-preparedness, cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) at last preloss assessment with bereavement outcomes over the first two bereavement years were evaluated among 332 caregivers of advanced cancer patients using hierarchical linear models with t…
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Dignity Therapy in Pediatrics: A Case Series.
Objective: To report our first case series of Dignity Therapy modified for a pediatric palliative care population. Background: Dignity Therapy has been utilized successfully with terminally ill adult patients to help restore a sense of dignity and personhood as well as cope with existential distress near the end of life. To our knowledge, there are no published reports of this treatment modality in pediatric patients. Methods: The authors report the experience of a single-center case series of Dignity Therapy in a pediatric palliative care population. The adult Dignity Therapy process was adapted to fit the pediatric population and their families. Modifications are explained in some detail, and specific cases are shared to illustrate the process. The goal of this case series is to report on the application of Dignity Therapy to the pediatric population. Setting/subjects: Inclusion criter…
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Emma Burns; Holly G.; Prigerson and 5 others (2017)MEDLINE-indexed journal, not yet read by usPalliative Medicine20 citations
Moving on: Factors associated with caregivers’ bereavement adjustment using a random population-based face-to-face survey
BACKGROUND: Providing care at end of life has consequences for caregivers' bereavement experience. 'Difficulty moving on with life' is an informative and unbiased symptom of prolonged grief disorder. Predictors of bereaved caregivers' ability to 'move on' have not been examined across the population. AIM: To identify the characteristics of bereaved hands-on caregivers who were, and were not, able to 'move on' 13-60 months after the 'expected' death of someone close. DESIGN: The South Australian Health Omnibus is an annual, random, cross-sectional community survey. From 2000 to 2007, respondents were asked about providing care for someone terminally ill and their subsequent ability to 'move on'. Multivariable logistic regression models explored the characteristics moving on and not moving on. SETTING: Respondents were aged ⩾15 years and lived in households within South Australia. They had…
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Assessment of knowledge, attitude and practice and associated factors towards palliative care among nurses working in selected hospitals, Addis Ababa, Ethiopia.
Background: To provide quality care at the end of life or for chronically sick patients, nurses must have good knowledge, attitude and practice about palliative care (PC). In Ethiopia PC is new and very little is known about the type of services offered and the readiness of nurses to provide PC.
Methods: A cross sectional quantitative study design was carried out using 341 nurses working in selected hospitals in Addis Ababa from January 2012 to May 2012. Systematic random sampling was the method employed to select two governmental and two non-governmental hospitals. The researchers used triangulation in their study method making use of: Frommelt's Attitude Toward Care of the Dying (FATCOD) Scale, Palliative Care Quiz for Nursing (PCQN) and practice questions. This led to enhanced validity of the data. EPI-INFO and SPSS software statistical packages were applied for data entry and analysi…
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Mimi Jenko; Leah J.; Gonzalez and 1 others (2010)MEDLINE-indexed journal, not yet read by usCritical Care Nurse16 citations
Life Review in Critical Care: Possibilities at the End of Life
The therapeutic use of life review provides nurses with a framework for clinical interactions. It was a short but memorable clinical encounter, initiated with the eldest of 3 living sons. The men’s mother, an 87-year-old frail, Chinese-born woman, had just been terminally extubated. A palliative care nurse was facilitating the woman’s life review with the sons, who were recounting harrowing tales of their mother’s life in Hong Kong during World War II: how people commonly ate animals off the street and weeds growing in the cracks of buildings to survive. Prompted to share their “gifts of the heart”—what their mother taught them about life and living that would resonate in their hearts—the sons spent the next hour in soft-spoken reflection at the bedside. As time progressed, a healing space was created, echoing the words of Curtis and Eldridge2(pp38–40):Using the palliative care consultat…
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Post-traumatic cognitions, death anxiety, and coping mechanisms in patients with major depression disorder affected by a natural disaster: A mediatory model study.
Background: In this study, it was focused not on mental disorders that arise after a natural disaster, but on how psychiatric patients diagnosed with mental disorders were affected by the earthquake.
Objective: This study was aimed at investigating the relationship between death anxiety, one of the subheadings of Terror Management Theory, and post-traumatic cognitions and coping strategies in individuals diagnosed with Major Depressive Disorder (MDD) after a natural disaster.
Method: This cross-sectional, descriptive, and correlational study was conducted in the psychiatry outpatient clinic of a tertiary hospital in Adıyaman, one of the provinces affected by the February 6, 2023 earthquake in Turkey between February 2024 and May 2024. The study sample consisted of 75 patients diagnosed with Major Depressive Disorder who were affected by the earthquake. The data of the study were collecte…
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Death education and educators: The role of attitudes, anxiety, and future time perspective.
This study explores the impact of death representations on openness to death education among university students in teaching and education degree programs. Drawing from Terror Management Theory, the roles of future time perspective (FTP), death anxiety, and the ontological representation of death as total annihilation were analyzed. The results show that viewing death as annihilation negatively impacts FTP, reducing the ability to think about the future. Diminished FTP increases negative thoughts about death and lack of death acceptance. When FTP still allows making sense of life despite death, it reduces death rejection, however, it does not increase openness to death education, activating proximal defenses. Conversely, when death representation constrains FTP, death thoughts emerge that lead to desiring death education pathways, activating distal defenses. The study highlights the impo…
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Ideological Rigidity and Political Conservatism in Relation to Death Anxiety and Reactions to Those With Different Beliefs.
This research tested the assumptions of Terror Management Theory (Pyszczynski et al., 2015) and conservatism as motivated social cognition (Jost et al., 2003) regarding how belief systems relate to existential anxiety. Conservatism as motivated social cognition posits that politically conservative ideologies are uniquely capable of minimizing fears about death. In contrast, TMT asserts that ideological rigidity is associated with less fear of death but it also promotes aggression and intolerance against those with different beliefs. The relation of ideological rigidity and political conservatism to death anxiety and intolerance of those who have differing worldviews was explored in a sample of American university students (n = 134) and of American respondents from the Prolific crowdsourcing platform (n = 199). The results from both samples supported the hypothesis that ideological rigidi…
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Meaning in life as a mediator between death anxiety and life satisfaction.
Research based on Terror Management Theory suggests that death anxiety is a fundamental existential concern that threatens individuals' life satisfaction and that, in the process of coping with this anxiety, individuals tend to seek meaning in life. However, studies directly examining the impact of death anxiety on life satisfaction and the mediating role of meaning are lacking. This study aims to investigate the relationship between death anxiety and life satisfaction among adults and to test the mediating role of meaning in life in this relationship. 396 participants completed online scales measuring death anxiety, life satisfaction, and meaning in life. The findings revealed that death anxiety significantly predicted life satisfaction and that meaning in life partially mediated this relationship. The results suggest that meaning in life may play a buffering role in the association bet…
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Collapse and validation of terror management anxiety buffers -therapists' reactions to war.
This qualitative study aimed to analyze therapists' reactions to the Israel-Hamas war, using lenses offered by Terror Management Theory (TMT). Israeli therapists (N = 201) were asked to share their experiences, feelings and perceptions in light of the events and their recent professional interventions. Findings reveal four themes: first, showing that the war indeed raised existential anxiety and mortality salience, and then, in view of these, the functioning of the TMT anxiety buffer mechanisms in additional three themes, namely enhancement of self-esteem; reinforcement of collective worldviews; and seeking proximity to others. Interestingly, we observed both the collapse of these mechanisms after exposure to the salience of death, as well as their validation as a further reaction. Moreover, we identified breakdown and validation in both personal and professional elements of the anxiety …
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"Love Over Fear": How Nostalgic Songs and Relationship Types Buffer Death Anxiety.
The fear of death is a fundamental human anxiety. From the perspective of terror management theory (TMT), this study examines the potential of music to alleviate death anxiety. We conducted a 2 (salience: mortality vs. control) × 2 (song type: nostalgic vs. non-nostalgic) × 2 (relationship type: romantic vs. parent-child) between-subjects factorial experiment with 335 middle-aged participants (ages 35-40) who were married, had children, and had living parents. Multiple interaction effects among mortality salience, nostalgia, and relationship type indicated that romantic songs - especially nostalgic romantic songs - were more effective in reducing death anxiety than parent-child relationship songs. The findings highlight the defensive function of romantic relationship songs within the TMT framework, offering new insights for clinical interventions and public mental health practices aimed …
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