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1.
Palliat Support Care ; : 1-5, 2023 Aug 11.
Article in English | MEDLINE | ID: mdl-37565429

ABSTRACT

OBJECTIVES: Despite the clinical use of dignity therapy (DT) to enhance end-of-life experiences and promote an increased sense of meaning and purpose, little is known about the cost in practice settings. The aim is to examine the costs of implementing DT, including transcriptions, editing of legacy document, and dignity-therapists' time for interviews/patient's validation. METHODS: Analysis of a prior six-site, randomized controlled trial with a stepped-wedge design and chaplains or nurses delivering the DT. RESULTS: The mean cost per transcript was $84.30 (SD = 24.0), and the mean time required for transcription was 52.3 minutes (SD = 14.7). Chaplain interviews were more expensive and longer than nurse interviews. The mean cost and time required for transcription varied across the study sites. The typical total cost for each DT protocol was $331-$356. SIGNIFICANCE OF RESULTS: DT implementation costs varied by provider type and study site. The study's findings will be useful for translating DT in clinical practice and future research.

3.
N Engl J Med ; 390(13): 1250-1251, 2024 Apr 04.
Article in English | MEDLINE | ID: mdl-38598597

Subject(s)
Death , Terminal Care , Humans
4.
BMC Palliat Care ; 21(1): 8, 2022 Jan 11.
Article in English | MEDLINE | ID: mdl-35016670

ABSTRACT

OBJECTIVES: Intervention fidelity is imperative to ensure confidence in study results and intervention replication in research and clinical settings. Like many brief protocol psychotherapies, Dignity Therapy lacks sufficient evidence of intervention fidelity. To overcome this gap, our study purpose was to examine intervention fidelity among therapists trained with a systematized training protocol. METHODS: For preliminary fidelity evaluation in a large multi-site stepped wedge randomized controlled trial, we analyzed 46 early transcripts of interviews from 10 therapists (7 female; 7 White, 3 Black). Each transcript was evaluated with the Revised Dignity Therapy Adherence Checklist for consistency with the Dignity Therapy protocol in terms of its Process (15 dichotomous items) and Core Principles (6 Likert-type items). A second rater independently coded 26% of the transcripts to assess interrater reliability. RESULTS: Each therapist conducted 2 to 10 interviews. For the 46 scored transcripts, the mean Process score was 12.4/15 (SD = 1.2), and the mean Core Principles score was 9.9/12 (SD = 1.8) with 70% of the transcripts at or above the 80% fidelity criterion. Interrater reliability (Cohen's kappa and weighted kappa) for all Adherence Checklist items ranged between .75 and 1.0. For the Core Principles items, Cronbach's alpha was .92. CONCLUSIONS: Preliminary findings indicate that fidelity to Dignity Therapy delivery was acceptable for most transcripts and provide insights for improving consistency of intervention delivery. The systematized training protocol and ongoing monitoring with the fidelity audit tool will facilitate consistent intervention delivery and add to the literature about fidelity monitoring for brief protocol psychotherapeutic interventions.


Subject(s)
Neoplasms , Respect , Aged , Cross-Sectional Studies , Female , Humans , Outpatients , Reproducibility of Results
5.
Palliat Support Care ; 20(3): 321-327, 2022 06.
Article in English | MEDLINE | ID: mdl-35713352

ABSTRACT

OBJECTIVE: Dignity therapy (DT) is a guided process conducted by a health professional for reviewing one's life to promote dignity through the illness process. Empathic communication has been shown to be important in clinical interactions but has yet to be examined in the DT interview session. The Empathic Communication Coding System (ECCS) is a validated, reliable coding system used in clinical interactions. The aims of this study were (1) to assess the feasibility of the ECCS in DT sessions and (2) to describe the process of empathic communication during DT sessions. METHODS: We conducted a secondary analysis of 25 transcripts of DT sessions with older cancer patients. These DT sessions were collected as part of larger randomized controlled trial. We revised the ECCS and then coded the transcripts using the new ECCS-DT. Two coders achieved inter-rater reliability (κ = 0.84) on 20% of the transcripts and then independently coded the remaining transcripts. RESULTS: Participants were individuals with cancer between the ages of 55 and 75. We developed the ECCS-DT with four empathic response categories: acknowledgment, reflection, validation, and shared experience. We found that of the 235 idea units, 198 had at least one of the four empathic responses present. Of the total 25 DT sessions, 17 had at least one empathic response present in all idea units. SIGNIFICANCE OF RESULTS: This feasibility study is an essential first step in our larger program of research to understand how empathic communication may play a role in DT outcomes. We aim to replicate findings in a larger sample and also investigate the linkage empathic communication may have in the DT session to positive patient outcomes. These findings, in turn, may lead to further refinement of training for dignity therapists, development of research into empathy as a mediator of outcomes, and generation of new interventions.


Subject(s)
Empathy , Respect , Aged , Communication , Feasibility Studies , Humans , Middle Aged , Reproducibility of Results
6.
Palliat Support Care ; 20(2): 178-188, 2022 04.
Article in English | MEDLINE | ID: mdl-34036932

ABSTRACT

BACKGROUND: Dignity Therapy (DT) has been implemented over the past 20 years, but a detailed training protocol is not available to facilitate consistency of its implementation. Consistent training positively impacts intervention reproducibility. OBJECTIVE: The objective of this article is to describe a detailed method for DT therapist training. METHOD: Chochinov's DT training seminars included preparatory reading of the DT textbook, in-person training, and practice interview sessions. Building on this training plan, we added feedback on practice and actual interview sessions, a tracking form to guide the process, a written training manual with an annotated model DT transcript, and quarterly support sessions. Using this training method, 18 DT therapists were trained across 6 sites. RESULTS: The DT experts' verbal and written feedback on the practice and actual sessions encouraged the trainees to provide additional attention to eight components: (1) initial framing (i.e., clarifying and organizing of the patient's own goals for creating the legacy document), (2) verifying the patient's understanding of DT, (3) gathering the patient's biographical information, (4) using probing questions, (5) exploring the patient's story thread, (6) refocusing toward the legacy document creation, (7) inviting the patient's expression of meaningful messages, and (8) general DT processes. Evident from the ongoing individual trainee mentoring was achievement and maintenance of adherence to the DT protocol. DISCUSSION: The DT training protocol is a process to enable consistency in the training process, across waves of trainees, toward the goal of maintaining DT implementation consistency. This training protocol will enable future DT researchers and clinicians to consistently train therapists across various disciplines and locales. Furthermore, we anticipate that this training protocol could be generalizable as a roadmap for implementers of other life review and palliative care interview-based interventions.


Subject(s)
Palliative Care , Respect , Humans , Palliative Care/methods , Reproducibility of Results
7.
Palliat Support Care ; 19(1): 28-33, 2021 02.
Article in English | MEDLINE | ID: mdl-32729457

ABSTRACT

OBJECTIVE: In 2015, a Chaplaincy Research Consortium generated a model of human spirituality in the palliative care context to further chaplaincy research. This article investigates the clinical fit of (a) the model's fundamental premise of universal human spirituality and (b) its 4 proposed stage descriptors (Discovery, Dialogue, Struggle, and Arrival). METHOD: First, we collected qualitative data from an interdisciplinary palliative care focus group. Participants (n = 5) shared responses to the statement "the human spirit has essential commonalities across [ … ] groups and [ … ] attributes." Participants also shared vignettes of spiritual care, and 48 vignettes illustrating patients' spiritual journeys were subsequently taken from the transcript of that group. Second, we invited different mixed discipline palliative care professionals (n = 9) to individually card sort these vignettes to the model's 4 stage descriptors; we conducted pattern analysis on the results. We then administered a third step, convening six physicians to complete the card sort again, this time allowing designation of cards to one or two of the 4 stage descriptors. RESULTS: Focus group participants were supportive of the model's all-encompassing definition of spirituality. The concept of "connectedness" was a shared focus for all participants, connectedness and spirituality appearing almost synonymous. Pattern analysis of assigned 48 vignettes to the 4 stages showed stronger consensus around Discovery and Arrival than Struggle and Dialogue. Results of the additional card sort suggested Struggle and Dialogue involve oscillation and are harder to think of as a steady state as distinct from processes associated with Discovery or Arrival. SIGNIFICANCE OF RESULTS: "Connectedness" is a productive concept for modeling human spiritual experience near the end of life. As one healthcare professional said: "this connectedness piece is [ … ] what I always look for … " Although further work is needed to understand struggle and dialogue elements in peoples' spiritual journeys, discovery and arrival shared consensus among participants.


Subject(s)
Palliative Care , Spiritual Therapies , Spirituality , Hospice and Palliative Care Nursing , Humans , Physicians
8.
Health Commun ; 32(10): 1225-1232, 2017 10.
Article in English | MEDLINE | ID: mdl-27612506

ABSTRACT

While there is a robust literature describing family conferences (FCs) in adult intensive care units (ICUs), less information exists about FCs in pediatric ICUs (PICUs). We conducted a pilot study to describe the focus of discussion, communication patterns of health care team members (HTMs) and parents, and parents' perspectives about clinician communication during PICU FCs. We analyzed data from 22 video- or audiorecorded PICU FCs and post-FC questionnaire responses from 27 parents involved in 18 FCs. We used the Roter Interaction Analysis System (RIAS) to describe FC dialogue content. Our questionnaire included the validated Communication Assessment Tool (CAT). FCs were focused on care planning (n = 5), decision making (n = 6), and updates (n = 11). Most speech came from HTMs (mean 85%; range, 65-94%). Most HTM utterances involved medical information. Most parent utterances involved asking for explanations. The mean overall CAT score was 4.62 (using a 1-5 scale where 5 represents excellent and 1 poor) with a mean of 73.02% "excellent" responses. Update and care-planning FCs had lower CAT scores compared to decision-making FCs. The lowest scoring CAT items were "Involved me in decisions as much as I wanted," "Talked in terms I could understand," and "Gave me as much information as I wanted." These findings suggest that while health care providers spend most of their time during FCs relaying medical information, more attention should be directed at providing information in an understandable manner. More work is needed to improve communication when decision making is not the main focus of the FC.


Subject(s)
Communication , Decision Making , Intensive Care Units, Pediatric , Parents/psychology , Professional-Family Relations , Adult , Child, Preschool , Female , Humans , Male , Patient Care Planning , Pilot Projects , Terminal Care
9.
J Cancer Educ ; 32(3): 491-495, 2017 Sep.
Article in English | MEDLINE | ID: mdl-26960311

ABSTRACT

This short report contributes to the expanding body of qualitative research literature about the cognitive processes of newly diagnosed cancer patients as they adjust to a diagnosis of cancer. The study is based on secondary qualitative analysis of audio records collected as part of a larger NIH study (RO1D: An Interdisciplinary Perspective: A Social Science Examination of Oncofertility RL1 HD058296). Core categories illustrate the processes of "naming it," "dealing with dealing with it," and finding the "new norm" and were based on nine patient experiences. We observe that our substantive conceptual categories have equivalents in bereavement and grief literature where researchers have posited the theory that processing the diagnosis of a terminal illness is the equivalent to adjusting to a bereavement. These findings emphasize the importance of understanding real-time patient thoughts and feelings as soon after diagnosis as was possible with full patient consent.


Subject(s)
Adaptation, Psychological , Capacity Building , Decision Making , Neoplasms/psychology , Adult , Bereavement , Female , Humans , Male , Middle Aged , Neoplasms/diagnosis , Qualitative Research
10.
Crit Care Med ; 44(12): 2208-2214, 2016 Dec.
Article in English | MEDLINE | ID: mdl-27513360

ABSTRACT

OBJECTIVE: In the ICU, discussions between clinicians and surrogate decision makers are often accompanied by conflict about a patient's prognosis or care plan. Trust plays a role in limiting conflict, but little is known about the determinants of trust in the ICU. We sought to identify the dimensions of trust and clinician behaviors conducive to trust formation in the ICU. DESIGN: Prospective qualitative study. SETTING: Medical ICU of a major urban university hospital. SUBJECTS: Surrogate decision makers of intubated, mechanically ventilated patients in the medical ICU. MEASUREMENTS AND MAIN RESULTS: Semistructured interviews focused on surrogates' general experiences in the ICU and on their trust in the clinicians caring for the patient. Interviews were audio-recorded, transcribed verbatim, and coded by two reviewers. Constant comparison was used to identify themes pertaining to trust. Thirty surrogate interviews revealed five dimensions of trust in ICU clinicians: technical competence, communication, honesty, benevolence, and interpersonal skills. Most surrogates emphasized the role of nurses in trust formation, frequently citing their technical competence. Trust in physicians was most commonly related to honesty and the quality of their communication with surrogates. CONCLUSIONS: Interventions to improve trust in the ICU should be role-specific, since surrogate expectations are different for physicians and nurses with regard to behaviors relevant to trust. Further research is needed to confirm our findings and explore the impact of trust modification on clinician-family conflict.


Subject(s)
Intensive Care Units , Proxy/psychology , Third-Party Consent , Trust , Adolescent , Adult , Aged , Female , Humans , Interpersonal Relations , Interviews as Topic , Male , Middle Aged , Physician-Patient Relations , Prospective Studies , Qualitative Research , Trust/psychology , Young Adult
11.
Cancer Control ; 22(4): 450-64, 2015 Oct.
Article in English | MEDLINE | ID: mdl-26678972

ABSTRACT

BACKGROUND: Many of the world's population live in rural areas. However, access and dissemination of the advances taking place in the field of palliative care to patients living in rural areas have been limited. METHODS: We searched 2 large databases of the medical literature and found 248 relevant articles; we also identified another 59 articles through networking and a hand search of reference lists. Of those 307 articles, 39 met the inclusion criteria and were grouped into the following subcategories: intervention (n = 4), needs assessment (n = 2), program planning (n = 3), program evaluation (n = 4), education (n = 7), financial (n = 8), and comprehensive/systematic literature reviews (n = 11). RESULTS: We synthesized the current state of rural palliative care research and practice to identify important gaps for future research. Studies were conducted in the United States, Australia, Canada, Africa, Sweden, and India. Two randomized control trials were identified, both of which used telehealth approaches and had positive survival outcomes. One study demonstrated positive patient quality of life and depression outcomes. CONCLUSIONS: Research to guide rural palliative care practice is sparse. Approaches to telehealth, community- academic partnerships, and training rural health care professionals show promise, but more research is needed to determine best practices for providing palliative care to patients living in rural settings.


Subject(s)
Palliative Care , Humans , Quality of Life , Randomized Controlled Trials as Topic , Rural Population
12.
BMC Palliat Care ; 14: 8, 2015.
Article in English | MEDLINE | ID: mdl-25844066

ABSTRACT

BACKGROUND: Dignity Therapy (DT), an intervention for people facing serious illness, focuses on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document for loved ones. Research on DT began more than a decade ago and has been conducted in 7 countries, but a systematic review of DT research has not been published. METHODS: Using a PubMed search with key terms of 'dignity therapy', 'dignity psychotherapy', 'Chochinov', and 'dignity care', we found 29 articles on DT and retained 25 after full-text review. RESULTS: Of these, 17 articles representing 12 quantitative studies establish that patients who receive DT report high satisfaction and benefits for themselves and their families, including increased sense of meaning and purpose. The effects of DT on physical or emotional symptoms, however, were inconsistent. CONCLUSIONS: Conclusions point to three areas for future research on DT, to determine: (1) whether the DT intervention exerts an impact at a spiritual level and/or as a life completion task; (2) how DT should be implemented in real world settings; and (3) if DT has an effect on the illness experience within the context of not only the patient, but also the family and community. Building on this body of DT research, investigators will need to continue to be sensitive as they involve participants in DT studies and innovations to facilitate the generation and delivery of legacy documents to participants near the end of life.

13.
BMC Palliat Care ; 14: 29, 2015 Jun 02.
Article in English | MEDLINE | ID: mdl-26031498

ABSTRACT

BACKGROUND: Chaplaincy is a relatively new discipline in medicine that provides for care of the human spirit in healthcare contexts for people of all worldviews. Studies indicate wide appreciation for its importance, yet empirical research is limited. Our purpose is to create a model of human spiritual processes and needs in palliative care situations so that researchers can locate their hypotheses in a common model which will evolve with relevant findings. METHODS: The Model Building Subgroup worked with the Chaplaincy Research Consortium as part of a larger Templeton Foundation funded project to enhance research in the area. It met with members for an hour on three successive occasions over three years and exchanged drafts for open comment between meetings. All members of the Subgroup agreed on the final draft. RESULTS: The model uses modestly adapted existing definitions and models. It describes the human experience of spirituality during serious illness in three renditions: visual, mathematical, and verbal so that researchers can use whichever is applicable. The visual rendition has four domains: spiritual, psychological, physical and social with process arrows and permeable boundaries between all areas. The mathematical rendition has the same four factors and is rendered as an integral equation, corresponding to an integrative function postulated for the human spirit. In both renditions, the model is notable in its allowance for direct spiritual experience and a domain or factor in its own right, not only experience that is created through the others. The model does not describe anything beyond the human experience. The verbal rendition builds on existing work to describe the processes of the human spirit, relating it to the four domains or factors. CONCLUSIONS: A consensus model of the human spirit to generate hypotheses and evolve based on data has been delineated. Implications of the model for how the human spirit functions and how the chaplain can care for the patient or family caregiver's spiritual coping and well-being are discussed. The next step is to generate researchable hypotheses, results of research from which will give insight into the human spirit and guidance to chaplains caring for it.


Subject(s)
Clergy/psychology , Models, Theoretical , Palliative Care/psychology , Spirituality , Adaptation, Psychological , Health Services Research , Health Status , Humans , Interpersonal Relations , Mental Health
14.
BMC Palliat Care ; 14: 12, 2015 Apr 18.
Article in English | MEDLINE | ID: mdl-25927207

ABSTRACT

BACKGROUND: Despite recognition of the centrality of professional board-certified chaplains (BCC) in palliative care, the discipline has little research to guide its practices. To help address this limitation, HealthCare Chaplaincy Network funded six proposals in which BCCs worked collaboratively with established researchers. Recognizing the importance of interdisciplinary collaboration in the development of a new field, this paper reports on an exploratory study of project members' reflections over time on the benefits and challenges of conducting inter-disciplinary spiritual care research. METHODS: Data collection occurred in two stages. Stage 1 entailed two independent, self-reflective focus groups, organized by professional discipline, mid-way through the site projects. Stage 2 entailed end-of-project site reports and a conference questionnaire. RESULTS: Eighteen professionals participated in the group discussions. Stage 1: researchers perceived chaplains as eager workers passionately committed to their patients and to research, and identified challenges faced by chaplains in learning to conduct research. Chaplains perceived researchers as passionate about their work, were concerned research might uncover negative findings for their profession, and sensed they used a dissimilar paradigm from their research colleagues regarding the 'ways of relating' to knowledge and understanding. Stage 2: researchers and chaplains noted important changes they ascribed to the interdisciplinary collaboration that were classified into six domains of cultural and philosophical understanding: respect; learning; discovery; creativity; fruitful partnerships; and learning needs. CONCLUSIONS: Chaplains and researchers initially expressed divergent perspectives on the research collaborations. During the projects' lifespans, these differences were acknowledged and addressed. Mutual appreciation for each discipline's strengths and contributions to inter-professional dialogue emerged.


Subject(s)
Chaplaincy Service, Hospital/organization & administration , Clergy/psychology , Cooperative Behavior , Health Services Research/organization & administration , Research Personnel/psychology , Adult , Female , Focus Groups , Humans , Interdisciplinary Communication , Male , Middle Aged , Palliative Care/organization & administration , Patient Care Team/organization & administration , Perception , Surveys and Questionnaires
15.
BMC Palliat Care ; 13(1): 21, 2014 Apr 10.
Article in English | MEDLINE | ID: mdl-24721698

ABSTRACT

BACKGROUND: Advance care planning (ACP) provides for decisions in the event of decisional incapacity. Determining ahead of time what a person may want is challenging and limits the utility of ACP. We present empirical evidence for a new approach to ACP: the individual's "intervention threshold." The intervention threshold is intuitively understood by clinicians and lay people, but has not been thoroughly described, measured, or analyzed. METHODS: Using a mixed-methods approach to address the concept of the intervention thresholds, we recruited 52 subjects from a population of chronically ill outpatients for structured telephone interviews assessing knowledge, attitudes, and prior ACP activities. Respondents were presented with 11 interventions for each of four medical scenarios. For each scenario, they were asked whether they would accept each intervention. Data was evaluated by descriptive statistics and chi-squared statistics. RESULTS: Complete data were obtained from 52 patients, mean age of 64.5, 34.6% of whom were male. Only 17.3% reported prior ACP discussion with a physician. Rates of accepting and refusing interventions varied by scenario (p < 0.0001) and intervention intensity (p < 0.0001). CONCLUSIONS: These data provide evidence that people display transitions between wanting or not wanting interventions based on scenarios. Further research is needed to determine effective ways to identify, measure, and represent the components of an individual's intervention threshold in order to facilitate informed decision making during future incapacity.

16.
J Palliat Med ; 27(2): 176-184, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37676977

ABSTRACT

Background: Patients consider the life review intervention, Dignity Therapy (DT), beneficial to themselves and their families. However, DT has inconsistent effects on symptoms and lacks evidence of effects on spiritual/existential outcomes. Objective: To compare usual outpatient palliative care and chaplain-led or nurse-led DT for effects on a quality-of-life outcome, dignity impact. Design/Setting/Subjects: In a stepped-wedge trial, six sites in the United States transitioned from usual care to either chaplain-led or nurse-led DT in a random order. Of 638 eligible cancer patients (age ≥55 years), 579 (59% female, mean age 66.4 ± 7.4 years, 78% White, 61% stage 4 cancer) provided data for analysis. Methods: Over six weeks, patients completed pretest/posttest measures, including the Dignity Impact Scale (DIS, ranges 7-35, low-high impact) and engaged in DT+usual care or usual care. They completed procedures in person (steps 1-3) or via Zoom (step 4 during pandemic). We used multiple imputation and regression analysis adjusting for pretest DIS, study site, and step. Results: At pretest, mean DIS scores were 24.3 ± 4.3 and 25.9 ± 4.3 for the DT (n = 317) and usual care (n = 262) groups, respectively. Adjusting for pretest DIS scores, site, and step, the chaplain-led (ß = 1.7, p = 0.02) and nurse-led (ß = 2.1, p = 0.005) groups reported significantly higher posttest DIS scores than usual care. Adjusting for age, sex, race, education, and income, the effect on DIS scores remained significant for both DT groups. Conclusion: Whether led by chaplains or nurses, DT improved dignity for outpatient palliative care patients with cancer. This rigorous trial of DT is a milestone in palliative care and spiritual health services research. clinicaltrials.gov: NCT03209440.


Subject(s)
Neoplasms , Terminal Care , Humans , Female , Middle Aged , Aged , Male , Dignity Therapy , Palliative Care/methods , Terminal Care/methods , Outpatients , Neoplasms/therapy , Quality of Life
17.
J Pain Symptom Manage ; 67(4): e333-e340, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38215893

ABSTRACT

CONTEXT: Dignity therapy (DT) is a well-researched psychotherapeutic intervention but it remains unclear whether symptom burden or religious/spiritual (R/S) struggles moderate DT outcomes. OBJECTIVE: To explore the effects of symptom burden and R/S struggles on DT outcomes. METHODS: This analysis was the secondary aim of a randomized controlled trial that employed a stepped-wedge design and included 579 participants with cancer, recruited from six sites across the United States. Participants were ages 55 years and older, 59% female, 22% race other than White, and receiving outpatient specialty palliative care. Outcome measures included the seven-item dignity impact scale (DIS), and QUAL-E subscales (preparation for death; life completion); distress measures were the Edmonton Symptom Assessment Scale (ESAS-r) (symptom burden), and the Religious Spiritual Struggle Scale (RSS-14; R/S). RESULTS: DT effects on DIS were significant for patients with both low (P = 0.03) and moderate/high symptom burden (P = 0.001). They were significant for patients with low (P = 0.004) but not high R/S struggle (P = 0.10). Moderation effects of symptom burden (P = 0.054) and R/S struggle (P = 0.52) on DIS were not significant. DT effects on preparation and completion were not significant, neither were the moderation effects of the two distress measures. CONCLUSION: Neither baseline symptom burden nor R/S struggle significantly moderated the effect of DT on DIS in this sample. Further study is warranted including exploration of other moderation models and development of measures sensitive to effects of DT and other end-of-life psychotherapeutic interventions.


Subject(s)
Dignity Therapy , Neoplasms , Humans , Female , Male , Symptom Burden , Patients , Ambulatory Care , Neoplasms/therapy , Palliative Care , Quality of Life
18.
Pediatr Crit Care Med ; 14(1): e34-44, 2013 Jan.
Article in English | MEDLINE | ID: mdl-23249788

ABSTRACT

OBJECTIVE: Describe the roles and respective responsibilities of PICU healthcare professionals in end-of-life care decisions faced by PICU parents. DESIGN: Retrospective qualitative study. SETTING: University-based tertiary care children's hospital. PARTICIPANTS: Eighteen parents of children who died in the pediatric ICU and 48 PICU healthcare professionals (physicians, nurses, social workers, child-life specialists, chaplains, and case managers). INTERVENTIONS: In depth, semi-structured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making. MEASUREMENTS AND MAIN RESULTS: We identified end-of-life care decisions that parents face based on descriptions by parents and healthcare professionals. Participants described medical and nonmedical decisions addressed toward the end of a child's life. From the descriptions, we identified seven roles healthcare professionals play in end-of-life care decisions. The family supporter addresses emotional, spiritual, environmental, relational, and informational family needs in a nondirective way. The family advocate helps families articulate their views and needs to healthcare professionals. The information giver provides parents with medical information, identifies decisions or describes available options, and clarifies parents' understanding. The general care coordinator helps facilitate interactions among healthcare professionals in the PICU, among healthcare professionals from different subspecialty teams, and between healthcare professionals and parents. The decision maker makes or directly influences the defined plan of action. The end-of-life care coordinator organizes and executes functions occurring directly before, during, and after dying/death. The point person develops a unique trusting relationship with parents. CONCLUSIONS: Our results describe a framework for healthcare professionals' roles in parental end-of-life care decision making in the pediatric ICU that includes directive, value-neutral, and organizational roles. More research is needed to validate these roles. Actively ensuring attention to these roles during the decision-making process could improve parents' experiences at the end of a child's life.


Subject(s)
Decision Making , Intensive Care Units, Pediatric , Professional Role , Terminal Care , Adult , Aged , Child , Child, Preschool , Clergy , Communication , Female , Focus Groups , Health Personnel , Humans , Infant , Infant, Newborn , Interviews as Topic , Male , Middle Aged , Parents , Patient Care Planning , Retrospective Studies , Social Work , Young Adult
19.
J Palliat Med ; 26(12): 1604-1609, 2023 12.
Article in English | MEDLINE | ID: mdl-37824751

ABSTRACT

Background: How people face mortality is a crucial matter for medicine. Yet, there is not a coherent and comprehensive understanding of how people can process the experience such that it is not traumatic. Methods: This article offers a "logic model" of how existential maturation occurs, using analogies from cell biology to explain the process. Results: This model depicts 10 mechanisms that together deal with mortality-salient events. Collectively, they are termed the existential function, which is seen as an innate, ever-evolving, integral part of the mind. An operational boundary selectively manages how realities are taken in. Processing is initiated with other essential people, ushering in reiterative steps of listening, finding, exploring, making meaning, and adjusting. The result is adaptive, integrated, mortality-acknowledging dispositions of mind. The process allows quality of life at the end of life and healthy mourning; impediments to it make for existential suffering and complicated grief. Conclusions: This conceptual model describes how people can face mortality. Its merit depends on its source in human experience, its explanatory power, its ability to guide people as they face mortality, and its ability to stimulate productive perspectives. It is therefore offered as an invitation for discussion, research, revision, and evolution.


Subject(s)
Death , Quality of Life , Humans , Grief , Attitude to Death , Existentialism
20.
J Palliat Med ; 26(2): 235-243, 2023 02.
Article in English | MEDLINE | ID: mdl-36067074

ABSTRACT

Background: Death anxiety is powerful, potentially contributes to suffering, and yet has to date not been extensively studied in the context of palliative care. Availability of a validated Death Anxiety and Distress Scale (DADDS) opens the opportunity to better assess and redress death anxiety in serious illness. Objective: We explored death anxiety/distress for associations with physical and psychosocial factors. Design: Ancillary to a randomized clinical trial (RCT) of Dignity Therapy (DT), we enrolled a convenience sample of 167 older adults in the United States with cancer and receiving outpatient palliative care (mean age 65.9 [7.3] years, 62% female, 84% White, 62% stage 4 cancer). They completed the DADDS and several measures for the stepped-wedged RCT, including demographic factors, religious struggle, dignity-related distress, existential quality of life (QoL), and terminal illness awareness (TIA). Results: DADDS scores were generally unrelated to demographic factors (including religious affiliation, intrinsic religiousness, and frequency of prayer). DADDS scores were positively correlated with religious struggle (p < 0.001) and dignity-related distress (p < 0.001) and negatively correlated with existential QoL (p < 0.001). TIA was significantly nonlinearly associated with both the total DADDS (p = 0.007) and its Finitude subscale (p ≤ 0.001) scores. There was a statistically significant decrease in Finitude subscale scores for a subset of participants who completed a post-DT DADDS (p = 0.04). Conclusions: Findings, if replicable, suggest that further research on death anxiety and prognostic awareness in the context of palliative medicine is in order. Findings also raise questions about the optimal nature and timing of spiritual and psychosocial interventions, something that might entail evaluation or screening for death anxiety and prognostic awareness for maximizing the effectiveness of care.


Subject(s)
Hospice and Palliative Care Nursing , Neoplasms , Female , Humans , Aged , Male , Palliative Care/psychology , Acedapsone , Quality of Life/psychology , Anxiety , Neoplasms/therapy , Neoplasms/psychology
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