Background: Incorporating patient narratives into the electronic health record (EHR) is an opportunity to integrate patients' values and beliefs into their care and improve patient–clinician communication.
Objective: The study's aims were to (1) identify barriers and facilitators influencing the implementation of a cocreated patient narrative intervention and (2) assess the acceptability/usability of the patient's narrative from the perspective of key stakeholders—the patient and acute care bedside nurse.
Design: We used an implementation design using mixed methods.
Setting/Subjects: Twenty patients and 18 nurses were enrolled from five units in an acute care hospital.
Results: For patients, the narrative intervention provided an avenue to discuss and share how illness has impacted their life in psychological, social, and spiritual belief domains. For nurses, the ability to read the patient's narrative provided benefits that fostered improved communication and more connection with their patients. Despite successfully meeting recruitment targets, time was the largest barrier for patient and nurse participants. Overall, the nurse participants gave high ratings on most of the items on the System Usability Scale with one exception—EHR integration. The lack of EHR integration on the System Usability Survey corresponds with the nurses' stated desire for a prominent location of patient narratives in the EHR.
Conclusions: The patient narrative intervention was acceptable and usable for hospitalized patients and nurse participants. Our study demonstrates that a cocreated patient narrative intervention provides avenues for patients and nurses to connect despite being in hectic acute care settings.
Background: Narrative medicine (NM) interventions have positively influenced empathy and burnout to varying degrees in health-care workers. We systematically reviewed the impact of poetry, a form of NM, on empathy and professional burnout.
Methods: A comprehensive search of Ovid MEDLINE(R) and Epub Ahead of Print, In-Process & Other Non-Indexed Citations, and Daily, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus, from inception to September 25, 2018, for articles published in English, was conducted using search terms related to NM, empathy, professional burnout, and health-care personnel.
Results: Of the 401 abstracts independently screened for inclusion by 2 reviewers, 2 quantitative, 3 qualitative studies, and 1 research letter were included. One research letter, focusing on the use of poetry, found it to increase empathy as measured by a nonvalidated questionnaire. All other studies used mixed NM interventions: 2 quantitative studies, using validated surveys, showed an increase in empathy and 2 qualitative studies showed limited to a prominent finding of increased empathy. There were no studies that used poetry exclusively to assess impact on professional burnout. One quantitative study, utilizing a validated survey, revealed no overall reduced burnout among residents, although high attendance participants had moderately reduced burnout postintervention, and one qualitative study noted limited reduction in burnout.
Conclusion: There is evidence that poetry as part of a NM intervention may increase empathy and limited evidence that it may reduce professional burnout among health-care workers.
Clémence Rochefort témoigne de son deuil suite au décès de son célèbre père, Jean Rochefort. La gentillesse, la sincérité et la célébrité de l'acteur laissent sa fille dans un deuil où elle doit gérer non seulement la douleur de la perte mais aussi les doutes : comment être digne de lui ? De quelle manière continuer à vivre, sans être hantée par les souvenirs mais sans pour autant oublier ? Comment trouver un compagnon de vie, une présence masculine qui prenne, en quelque sorte, la suite ? De quelle manière, se servir de sa transmission ? Que reste-t-il lorsqu'un tel père disparait ?
BACKGROUND: Evaluation of palliative care services is crucial in order to ensure high quality care and to plan future services in light of growing demand. There is also an acknowledgement of the need to better understand patient experiences as part of the paradigm shift from paternalistic professional and passive patient to a more collaborative partnership. However, while clinical decision-making is well-developed, the science of the delivery of care is relatively novel for most clinicians. We therefore introduce the Trajectory Touchpoint Technique (TTT), a systematic methodology designed using service delivery models and theories, for capturing the voices of palliative care service users.
METHODS: We used design science research as our overarching methodology to build our Trajectory Touchpoint Technique. We also incorporated a range of kernel theories and service design models from the wider social sciences. We developed and tested our Trajectory Touchpoint Technique with palliative care patients and their families (n = 239) in collaboration with different hospices and hospital-based palliative care providers (n = 8).
RESULTS: The Trajectory Touchpoint Technique is user-friendly, enables systematic data collection and analysis, and incorporates all tangible and intangible dimensions of palliative care important to the service user. These dimensions often go beyond clinical care to encompass wider aspects that are important to the people who use the service. Our collaborating organisations have already begun to make changes to their service delivery based on our results.
CONCLUSIONS: The Trajectory Touchpoint Technique overcomes several limitations of other palliative care evaluation methods, while being more comprehensive. The new technique incorporates physical, psychosocial, and spiritual aspects of palliative care, and is user-friendly for inpatients, outpatients, families, and the bereaved. The new technique has been tested with people who have a range of illnesses, in a variety of locations, among people with learning disabilities and low levels of literacy, and with children as well as adults. The Trajectory Touchpoint Technique has already uncovered many previously unrecognised opportunities for service improvement, demonstrating its ability to shape palliative care services to better meet the needs of patients and their families.
PURPOSE: Investigate whether Life Review Therapy and Memory Specificity Training (LRT-MST) targeting incurably ill cancer patients may also have a beneficial effect on caregiving burden, symptoms of anxiety and depression, and posttraumatic growth of the informal caregivers.
METHODS: Data was collected in the context of a randomized controlled trial (RCT) (secondary analyses) on the effect of LRT-MST among incurably cancer patients. Informal caregivers of participating patients were asked to complete outcome measures at baseline (T0), post-intervention (T1), and 1-month follow-up (T2): caregiver burden (caregivers reaction assessment scale (CRA)), symptoms of anxiety and depression (hospital anxiety and depression scale), and posttraumatic growth (posttraumatic growth inventory). Linear mixed models (intention to treat) were used to assess group differences in changes over time. Effect size and independent samples t tests were used to assess group differences at T1 and T2.
RESULTS: In total, 64 caregivers participated. At baseline, 56% of the caregivers experienced anxiety and 30% depression. No significant effect was found on these symptoms nor on posttraumatic growth or most aspects of caregiver burden. There was a significant effect of LRT-MST on the course of self-esteem (subscale CRA) (p = 0.013). Effect size was moderate post-intervention (ES = - 0.38, p = 0.23) and at 3-month follow-up (ES = 0.53, p = 0.083).
CONCLUSIONS: Many caregivers of incurably ill cancer patients experience symptoms of anxiety and depression. LRT-MST does not improve symptoms of depression and anxiety, negative aspects of caregiver burden, or posttraumatic growth. LRT-MST may have a protective effect on self-esteem of informal caregivers (positive aspect of caregiver burden).
Technology is changing many aspects of our daily lives including how we share our experiences. While there have been many advances in technology to sustain life, it has also led to changes in how we die. This study utilized publicly available online narratives (vlog postings) written by individuals diagnosed with a terminal illness to explore themes on what dying individuals wished to say about their experiences (n = 39). While the content of the messages varied, universally all postings provided advice for living a good life. The implications of these narratives are still unknown. Questions remain about the role online peer support plays in the dying process and the extent to which sharing one’s digital story can affect others online. The act of being introspective at the end of life and the desire for social connection is similar to other forms of social work intervention such as dignity therapy suggesting an opportunity for further exploration. Additionally, these end-of-life narratives could also serve as a tool for educating future social work professionals about the experiences of those diagnosed with a terminal illness.
Information about traditional end-of-life care customs was gathered from Maori New Zealanders. How health and palliative care services helped or hindered families to use their customs within different health care settings was also examined. The use of the digital story-telling method to create personalised short videos is reported on in this paper. Kaupapa Maori Research and social constructivist methods were employed to conduct face-to-face interviews with 61 Maori families (including someone with a life limiting illness), plant medicine healers, spiritual practitioners and health and palliative care providers. Of these, sixteen family representatives participated in a digital story telling workshop. A Kaupapa Maori thematic analysis confirmed earlier findings that the digital storytelling method was a useful technique to record Maori traditional caregiving customs. Subject material aligned with four dominant themes; (1) ‘whanau manaaki’, where the mana (value, prestige, authority) of family was given visibility and was celebrated; (2) the ‘importance of wairuatanga’ provided insight into the place of Maori spirituality, (3) the ‘importance of rongoa rakau’ highlighted the role of traditional plant medicines; and (4) the ‘cultural support provided by health professionals’ reflected the care values health and palliative Q3 care professionals should ideally adopt.
Conceptualizations of luxury usually derive from individuals who are agentic and empowered. Building upon the consumer-centered experiential movement, this paper deviates from researching the typical, listening instead to consumer narratives associated with luxury in contexts where agency is transitioning. We revisit notions of sacred and profane within the liminal space of palliative and end-of-life care. Adopting purposeful sampling, and agency enhancing storytelling, pathographies in particular, consumption experiences are narrated by patients, families, and bereaved users (n = 140) of multiple hospices (n = 5) in the UK. Findings shift the evolving consumer centric conceptualization of luxury into conceptions of liminal space, place (hospices as cathedrals), and people (community). A psychosocial narrative emerges which conceptualizes experiences as lived, personalized, integrated, familiar, transformational, hedonic, eudaimonic, and (dis)connected. Our discussion extends notions of the sacred and profane into the mundane and illustrates the ways in which those navigating a liminal space encounter unexpected yet astonishing luxury experiences.
BACKGROUND: People living with life-threatening illness experience unmet existential needs despite the growing research and clinical field of palliative care. Narrative interventions show promise in managing these problems, but more knowledge is needed on the characteristics of narrative interventions and the feasibility of using personal narratives in a hospital.
AIM: To review the literature on personal narratives in hospital-based palliative care interventions and to strengthen palliative care practices.
DESIGN: We conducted a systematic integrative review with qualitative analysis and narrative synthesis in accordance with PRISMA where applicable (PROSPERO#:CRD42018089202).
DATA SOURCES: We conducted a systematic search in PubMed, Embase, Scopus, Cinahl, SocINDEX and PsychInfo for primary research articles published until June 2018. We assessed full-text articles against the eligibility criteria followed by a discussion of quality using the Critical Appraisal Skills Programme.
RESULTS: Of 480 articles, we found 24 eligible for this review: 8 qualitative, 14 quantitative and 2 mixed methods. The articles reported on dignity therapy, legacy building, outlook, short-term life review and life review. Data analysis resulted in five themes: core principles, theoretical framework, content of narrative, outcome and, finally, acceptability and feasibility.
CONCLUSION: Various types of systematic palliative care interventions use personal narratives. Common to these is a shared psychotherapeutic theoretical understanding and aim. Clinical application in a hospital setting is both feasible and acceptable but requires flexibility regarding the practices of the setting and the needs of the patient.
Despite advances in treatment options, many patients diagnosed with cancer ultimately face the premature ending of their life. Under these circumstances, patients are confronted with the challenge of re-articulating their personal experiences and identities in ways that accommodate a changed reality and help them create meaning at the end of life. Their storytelling constitutes a particular type of illness story, distinct from other related categories. For example, although restitution narratives are driven by recovery, end-of-life stories come forth in relation to unattainable health and the contemplation of death. Health-care professionals may support the storytelling process. Techniques include diary keeping, reading stories written by other patients, and the co-creation of stories between patients and spiritual guides. Beyond having a therapeutic function, these personal stories are valuable pedagogical materials that help health-care professionals understand the end-of-life experience and they create more efficient care for patients.
BACKGROUND: Enhancing quality of life takes precedence in the terminal stage of a disease, when a cure is considered impossible and all alternative methods to prevent disease progression have been exhausted. Life review, involving appreciating accomplishments and resolving conflicts, is widely considered to be an effective approach to bringing peace to terminal patients.
PURPOSE: This study was conducted to assess the effects of life review on quality of life in terminal patients.
METHODS: The Cochrane Library, PubMed, MEDLINE, CINAHL, CEPS, and ProQuest databases were searched for original studies published between 2007 and July 2018. Studies that used experimental designs to assess the effects of life review on quality of life in terminal patients, involved patients aged >18 years, and were published in English or Chinese were considered eligible for inclusion. Studies that measured quality of life in individuals other than patients as well as unpublished papers or data were excluded. The search terms used included "life review," "end of life," "terminal or terminally ill," "advanced cancer," "palliative," "hospice," and "quality of life." The quality of each included study was assessed using the Downs and Black checklist.
RESULTS: Six studies with 296 patients were included in the review. The participants in the included studies were from multiple countries. Life review was found to affect quality of life significantly (95% CI [0.147, 0.668], Z = 3.062, p < .05). The selected studies exhibited moderate heterogeneity (I = 42.407, p > .1).
CONCLUSIONS: Life review was found to affect quality of life significantly in the participants in the included studies. The feasibility and safety of applying life review interventions should be considered for terminal patients, and implementers of these interventions should be trained and qualified. Only a few studies in the literature have evaluated the effects of life review therapy in terminal patients. Further studies that use stricter selection criteria are necessary to evaluate the efficacy of the life review intervention before its adoption in clinical practice.
Research aims: This scoping review maps the existing literature on narrative interventions within a palliative care and end-of-life context.
Methods: A scoping review was performed to address the research question: What observational or randomized controlled trials have been performed to evaluate narrative interventions in the palliative care setting? A search across multiple electronic databases was performed. The search results were screened. Relevant articles were reviewed for the identification of common themes and challenges.
Results: After reviewing 495 citations from electronic searches, and 44 articles from author archives or from manual review of article reference lists, we identified 34 articles for inclusion. Narrative interventions have focused on reflection or communication, and have been studied among providers, students, patients, and caregivers. Only patient/caregiver studies utilized randomized controlled design. Most studies were small and at the level of evaluating feasibility. Challenges include a high degree of heterogeneity among interventions, as well as heterogeneity among parameters for evaluating those interventions.
Conclusion: Narrative interventions are actively being evaluated with the intention of improving communication and wellbeing among all parties within the palliative care and end-of-life experience. The field would benefit from selecting a subset of outcomes that are comparable across studies, and a common framework for describing narrative interventions. Scant literature exists regarding narrative interventions to assist providers in communication.
Informal family caregivers make a significant contribution to the U.S. health care system, and the need for caregivers will likely increase. Gaining deeper insights into the caregiver experience will provide essential knowledge needed to support the future caregiver workforce delivering care. Discourse analysis is a viable approach in analyzing textual caregiver data that focuses on the end-of-life caregiving experience. The purpose of this study was to conduct an in-depth discourse analytic examination of 13 hours of caregiver interview data, which reveal the multiplicity of shifting stances and perceptions of one caregiver in the midst of end-of-life care, specifically with regard to his perceptions of self (caregiver) and other (care recipient). By isolating a specific but limited set of reference terms used throughout the discourse, we gained systematic glimpses into the mind and perceptions of this single caregiver in relation to his role as caregiver for his terminally ill wife.
OBJECTIVE: To identify common themes and topics that patients nearing the end of life want to discuss when sharing their life stories.
METHODS: Twenty audio-recorded transcripts of open-ended interviews of patients cared for by a palliative care team when approaching the end of life were analyzed using a qualitative analysis.
RESULTS: Qualitative analysis revealed that the primary contextual factors that patients drew upon to generate his or her life story are life events (including upbringing, job, education, travel, trauma, hardships, special events, military history, and hobbies), family and support system, and values and beliefs. Participants used their current medical condition, which included mortality, morbidity, and prognosis, to frame their life story.
CONCLUSION: Patients facing serious illness incorporate four major themes when reflecting upon their lives to create their personal life story: life events, family and support system, values and beliefs, and current medical condition.
Background: Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better.
Methods: Respondents in 90 family pairs (30 husband-wife, 30 parent-child, 30 sibling-sibling) rank-ordered 47 end-of-life statements as life-story narrative measure (Q-sort) and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view (respondent-personal) and predicted pair’s view (respondent-surrogate). They also scored their confidence in surrogate’s decision-making (0 to 4 = maximum) and familiarity with pair’s healthcare-preferences (1 to 4 = maximum). Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts (projection) and between respondent-surrogate and pair-personal Q-sorts before (simulation) and after controlling for correlation with respondent-personal scores (adjusted-simulation), and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity.
Results: Mean (SD) age was 35.4 (10.3) years, 69% were females, and 73 and 80% reported = very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 (0.58) and 75% were = familiar with pair’s healthcare-preferences. Mean (95% confidence interval) projection, simulation, and adjusted-simulation correlations were 0.68 (0.67–0.69), 0.42 (0.40–0.44), and 0.26 (0.24–0.28), respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score (rho = 0.18, p = 0.01). There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts (38, 32, 55%, respectively, p = 0.03) and percent agreement on healthcare-outcomes acceptability (55, 35, and 67%, respectively, p = 0.002).
Conclusions: Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background.
Background: Cannabis is increasingly used by persons at end of life to ameliorate symptoms such as pain, spasticity, anorexia, or anxiety. Cannabis hyperemesis is a distressing adverse effect of chronic use and may cause significant morbidity. Unfortunately, the clinical presentation of this syndrome may be subtle in a person with complex medical issues or disability. Providers must remain vigilant for possible variations in presentation in these populations.
Aim: To assess literature on cannabis hyperemesis and present unique considerations for clinical assessment and treatment for patients at end of life.
Design: Initial literature scoping yielded limited evidence on the subject in the setting of chronic disease and disability. A case of cannabis hyperemesis in a person with advanced amyotrophic lateral sclerosis is presented to illustrate challenges in diagnosis and management in this setting. A narrative synthesis of current literature on assessment and management and special considerations for evaluation and treatment for patients under palliative care was performed.
Results: Several unique considerations for the diagnosis and management of cannabis hyperemesis in palliative care patients are highlighted in the case presented, including: (1) Symptoms may possibly be abolished through decrease rather than complete abstinence from cannabis, (2) Frequent hot baths may not be present in patients with physical impairments in activities of daily living, and (3) Management of primary symptoms (pain, spasticity, nausea, and anxiety) in the end-of-life care patient must be considered to maximize comfort.
Conclusion: The presentation of cannabis hyperemesis may be atypical in palliative care patients due to disability. More work is needed to improve risk stratification for patients using cannabis for palliative care.
PURPOSE OF REVIEW: People with cancer commonly experience persistent pain and psychological distress. Interventions are needed which address the multifactorial nature of pain and depression, yet few studies have examined the impact of mindfulness-based interventions (MBIs) for cancer-related pain and depression.
RECENT FINDINGS: MBIs for cancer-related pain and depression can be effectively delivered across a range of modalities and show promise for alleviating mood and some physical health symptoms, although not always pain. There is some evidence for the cost-effectiveness of MBIs.
SUMMARY: The field of MBIs would benefit from greater methodological rigour and investigation into a broader range of cancer populations to increase the knowledge base and in turn the evidence base on which interventions can be developed to the benefit to patients with cancer-related pain and depression.
PURPOSE: Siblings of children and young people diagnosed with cancer are commonly reluctant to talk about their experiences due to the circumstances of the illness situation. This article aims to bring voice to experience and inform practice by investigating what and how three young sisters narrate about their illness experiences in personal blogs on the Internet.
METHODS: A narrative methodology for the analysis of life storytelling was applied primarily to investigate the sister's coping strategies and support needs.
RESULTS: The results show how the sisters constructed their own space for narration, with the main aims of expressing their feelings about the illness and seeking social support. The telling of their experiences along with encouraging comments from a supportive audience enabled a change in position from feeling neglected and silenced to being a recognized agent and caring sister. In addition, through their narrative coping the sisters went from powerless to powerful in their position in relation to cancer.
CONCLUSION: The results highlight the need for siblings to be able to narrate experience in a supportive context, where the processing of their relationship with the ill sister/brother should be understood as an important element of their coping with cancer and death.