Objective: Patients want to discuss spirituality more with their doctors but feel disempowered. Question prompt lists (QPLs) assist conversations. This study assessed the impact of a QPL on spirituality discussions in Palliative Care (PC).
Methods: This was a sub-study of a trial in which PC patients were randomised to either receive a QPL prior to a consultation or not, to see whether its provision influenced advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a PC physician. Consultations were recorded and transcribed. Transcriptions were analysed to examine the frequency and content of spirituality discussions. We conducted logistic regression to investigate the impact of the QPL and other predictors.
Results: 174 patients participated. Spirituality was discussed in half the consultations. Patients receiving a QPL discussed spirituality 1.38 times more than controls. This finding did not reach statistical significance. First PC consultation and being asked about their concerns by the doctor were significant predictors of a spiritual discussion.
Conclusion: Patients are more likely to discuss spirituality in their first PC consultation, and when their doctor asks them about their concerns.
Practice implications: Doctors caring for patients at the end of life should routinely raise spiritual issues.
Objective: Neurosurgeons care for critically ill patients near the end of life, yet little is known about how well their training prepares them for this role. We surveyed a random sample of neurosurgery residents to describe the quantity and quality of teaching activities related to serious illness communication and palliative care, and resident attitudes and perceived preparedness to care for seriously ill patients.
Methods: A previously validated survey instrument was adapted to reflect required communication and palliative care competencies in the 2015 the Accreditation Council for Graduate Medical Education (ACGME) Milestones for Neurological Surgery. The survey was reviewed for content validity by independent faculty neurosurgeons, piloted with graduating neurosurgical residents, and distributed online in August 2016 to neurosurgery residents in the United States using the American Association of Neurological Surgeons (AANS)/Congress of Neurological Surgeons (CNS) Joint Section on Neurotrauma and Critical Care email listserv. Multiple choice and Likert scale responses were analyzed using descriptive statistics.
Results: Sixty-two responses were recorded between August 2016 and October 2016. Most respondents reported no explicit teaching on: explaining risks and benefits of intubation and ventilation (69%), formulating prognoses in neurocritical care (60%), or leading family meetings (69%). Compared to performing craniotomies, respondents had less frequent practice leading discussions about withdrawing life-sustaining treatment (61% vs. 90%, p < 0.01, "weekly or more frequently"), and were less often observed (18% vs. 87%, p < 0.01) and given feedback on their performance (11% vs. 58%, p < 0.01). Nearly all respondents (95%) felt "prepared to discuss withdrawing life-sustaining treatments," however half (48%) reported they "would benefit from more communication training during residency." Most (87%) reported moral distress, agreeing that they "participated in operations and worried whether surgery aligned with patient goals."
Conclusions: Residents in our sample reported limited formal training, and relatively less observation and feedback, on required ACGME competencies in palliative care and communication. Most reported preparedness in this domain, but many were receptive to more training. Better quality and more consistent palliative care education in neurosurgery residency could improve competency and help ensure that neurosurgical care aligns with patient goals.
This study examined racial, ethnic, and other factors associated with whether older adults discussed their end-of-life (EOL) care wishes with family. A sample of 223 White, 95 African American, and 46 Hispanic adults aged 50 and older from a five-county area of Florida answered questions about sociodemographics, health, and preferences for involving family/friends in health-care decision-making. Analyses describe associations between whether discussions occurred and race/ethnicity and other factors, including preferences for family/friend involvement in health care. In descriptive analyses, one third (n = 113) had not discussed EOL care. No differences were evident between African Americans and non-Hispanic Whites. In multivariate analyses, EOL care discussions were less likely for Hispanics. Further analysis showed this lower likelihood existed among Hispanics with lesser family/friend involvement. Ethnicity influences EOL care discussion, moderated by family/friend involvement, though results are considered preliminary. Knowing the involvement of patients' family/friends could help providers initiate EOL care discussions.
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes.
Methods: A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria.
Results: Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases.
Conclusion: Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants.
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.
Background: Advanced care planning (ACP) is a process that involves thinking about what medical care one would like should individuals be seriously ill and cannot communicate decisions about treatment for themselves. The literature indicates that ACP leads to increased satisfaction from both patients and healthcare professionals. Despite the well-known benefits of ACP, it is still underutilised in Australia.
Methods: The aim of this study is to investigate the effects of normalising ACP in acute and community settings with the use of specially trained normalisation agents. This is a quasi-experimental study, involving 16 sites (8 intervention and 8 control) in two health districts in Australia. A minimum of total 288 participants will be recruited (144 intervention, 144 control). We will train four registered nurses as normalisation agents in the intervention sites, who will promote and facilitate ACP discussions with adult patients with chronic conditions in hospital and community settings. An audit of the prevalence of ACP and Advanced Care Directives (ACDs) will be conducted before and after the 6-month intervention period at the 16 sites to assess the effects of the ACP service delivered by these agents. We will also collect interview and survey data from patients and families who participate, and healthcare professionals who are involved in this service to capture their experiences with ACP.
Discussion: This study will potentially contribute to better patient outcomes with their health care services. Completion of ACDs will allow patients to express their wishes for care and receive the care that they wish for, as well as ease their family from the burden of making difficult decisions. The study will contribute to development of a new best practice model to normalise ACP that is sustainable and transferable in the processes of: 1) initiation of conversation; 2) discussion of important issues; 3) documentation of the wishes; 4) storage of the documented wishes; and 5) access and execution of the documented wishes. The study will generate new evidence on the challenges, strategies and benefits of normalising ACP into practice in acute and community settings.
Aim: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors.
Methods: Physicians from the six cancer centres in Sweden took part in focus group discussions from December 2017 and May 2018 and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives.
Results: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment.
Conclusion: Physicians working in paediatric oncology perceived challenges and facilitating factors in their communication with families when a cure was not an option. Training to overcome communication issues could support the early integration of palliative care and curative treatment.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.
Background: This study examines communication profiles and associated attitudes toward health care professionals in interviews with family caregivers of hospitalized patients with confirmed multidrug-resistant organisms (e.g., methicillin-resistant Staphylococcus aureus or multiresistant gram-negative bacteria) diagnosis at the end of life.
Objectives: This study aims to replicate and complement findings from a previous investigation using a different methodological framework. The benefits of linguistic research in medical contexts are highlighted.
Design: Fifty interviews with family caregivers were analyzed linguistically. The considered parameters include lexical choices such as evaluative wording, metaphors, and specialized terminology, as well as higher level categories-turn-taking, sentence-length, and personal deixis. These characteristics serve to assess attitudes toward medical staff, hygiene measures, knowledge, and its transfer and general emotional states.
Conclusions: Linguistic expertise adds benefits to the classical analysis of language data as used in social sciences. Family caregivers' linguistic and attitudinal profiles vary depending on whether their involvement in the overall situation is active or passive, and whether their relationship toward staff and hospital is cooperative or confrontative. Depending on the four possible combinations of those characteristics, different recommendations for communication strategies on the staff's side can be given. In all cases, clear and patient/family centeredness are considered beneficial.
BACKGROUND: Effective communication between healthcare professionals and relatives of patients approaching the end-of-life is vital to ensure patients have a 'good death'. To improve communication, it is important to first identify how this is currently being accomplished.
AIM: To review qualitative evidence concerning characteristics of communication about prognosis and end-of-life care between healthcare professionals and relatives of patients approaching the end-of-life.
DESIGN: Qualitative systematic review (PROSPERO registration CRD42017065560) using thematic synthesis. Peer-reviewed, English language articles exploring the content of conversations and how participants communicated were included. No date restrictions were applied. Quality of included studies was appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research.
DATA SOURCES: An electronic database search of CINAHL, MEDLINE, PsycINFO and EMBASE was performed.
RESULTS: Thirty-one papers were included. Seven themes were identified: highlighting deterioration; involvement in decision-making, post-decision interactional work, tailoring, honesty and clarity, specific techniques for information delivery and roles of different healthcare professionals. Varied levels of family involvement in decision-making were reported. Healthcare professionals used strategies to aid understanding and collaborative decision-making, such as highlighting the patient's deterioration, referring to patient wishes and tailoring information delivery. Doctors were regarded as responsible for discussing prognosis and decision-making, and nurses for providing individualized care.
CONCLUSION: Findings suggest training could provide healthcare professionals with these strategies to improve communication. Interventions such as question prompt lists could help relatives overcome barriers to involvement in decision-making. Further research is needed to understand communication with relatives in different settings and with different healthcare professionals.
Background: Advance care planning (ACP) often occurs too late in the disease course of those who are affected by brain tumors. Furthermore, the perspectives of brain tumor stakeholders on ACP are not well described. We reviewed a social media tweet chat to understand barriers to ACP experienced by brain tumor stakeholders.
Methods: We used qualitative methods to analyze a tweet chat (real-time virtual discussion) of brain tumor stakeholders. The one-hour tweet chat was hosted by Brain Tumor Social Media chat (@BTSMchat), a patient-run Twitter community, in January 2018. Participants reflected on four questions about ACP by including the hashtag "#BTSM" in tweets. Unique tweets and stakeholder type (i.e., patient, caregiver, advocate or organization member, clinician or researcher, or @BTSMchat leader) were coded. The tweet chat was qualitatively analyzed to identify key themes.
Results: A total of 52 participants from four countries contributed 336 tweets. Most participants were patients (people with brain tumors), followed by clinicians or researchers, and advocates or organizations. Three key themes emerged regarding brain tumor stakeholder perspectives about ACP: (1) attitudinal barriers prevent discussions of death; (2) need to ensure one's voice is heard; and (3) Goldilock's approach to timing-fearing ACP is too early or too late.
Conclusions: Various stakeholders, including people with brain tumors, shared perspectives on ACP through a tweet chat and highlighted important challenges and opportunities. Twitter is a new avenue for patients, clinicians, and advocates to engage with each other to better understand each other's perspectives related to ACP.
BACKGROUND: Effective training at medical school is essential to prepare new doctors to safely manage patients with palliative care (PC) and end of life care (EOLC) needs. The contribution of undergraduate PC course organisers is central but their collective views regarding role are unknown.
OBJECTIVE: To survey attitudes of PC course organisers regarding their course, organisation, the adequacy of training provided and level of personal satisfaction.
METHODS: An anonymised, multifactorial, web-based questionnaire was devised, tested, modified and then sent to lead PC course organisers at all UK medical schools.
RESULTS: Data were obtained from all 30 UK medical schools. Organisers agreed/strongly agreed (=agreed) that their PC course was highly rated by students (26, 87%). 25 (83%) agreed their course 'enabled misconceptions and fears about PC, death, dying and bereavement to be addressed', 'delivered quality PC training' (23, 77%), 'fulfilled General Medical Council requirements' (19, 63%), 'prepared students well to care for patients with PC/EOLC needs' (18, 60%) and 'enabled students to visit a hospice and see the role of doctors in caring for the dying' (17, 57%). Concerns were limited capacity to accommodate students (agreed 20, 66%) and variability in teaching according to location (15, 50%). Most agreed their institution recognised PC training as important (22, 73%), they felt supported by colleagues (21, 70%) and experienced cooperation between stakeholders (20, 67%). All agreed that PC training was essential for undergraduates, while 29 (97%) supported inclusion of a hospice visit in the curriculum. 27 agreed that their role was satisfying (90%), 3 disagreed (10%).
CONCLUSIONS: Approximately two-thirds of organisers were generally positive about their PC course, institution and role. A minority expressed concerns; these may reflect suboptimal PC training at their medical school and poor preparation of new doctors.
Experiencing the end of life of a family member in the intensive care unit is clearly difficult. An important role of critical care nurses is to help family members through this challenging period. This article highlights a few clinically significant barriers and facilitators related to improving family experiences at the patient's end of life that have received less attention in the literature thus far. Facilitators include specific aspects of communication, the nurse's role as the coordinator of care, bereavement care, promoting a "good death," and caring for health care providers. Barriers include medical uncertainty and differences in values and culture.
For patients at the end of life, the oncologist's care continues beyond the cessation of disease-directed therapy. When cure or even prolongation of life is no longer possible, oncologists have one last task remaining: to provide expert care to patients at the end of life and support for their families. Physical comfort, clear communication, emotional support, helping patients maintain a sense of purpose, clarifying wishes about attempts at resuscitation, working on legacies, addressing patient distress, and helping families as they struggle with their loss are all the work of a team of clinicians, led by the oncologist, who the patient and family continue to look to as their guide, even when no further antineoplastic therapies or immunotherapies can be offered. The team often includes the rest of the oncology team of clinicians, as well as social workers, chaplains, a palliative care clinician, and, when appropriate, a hospice team. Families with young children need specialized counseling and support. Ongoing losses (in identity or function or of roles in the family, community, or workplace) contribute to spiritual and existential distress. The palliative care and hospice teams can help with life reviews and reconnection with sources of spiritual support, including religious rituals, to help reaffirm identity and roles. The oncologist's final responsibility is ongoing communication with the survivors after the patient's death. Survivors appreciate ongoing communication, cards, and phone calls to answer any remaining questions and quell any lingering doubts. These communications also bring closure to the oncologist and oncology team, allowing them to reflect on and grieve their loss and to remember the work they did with the patient and his or her family.
The aim of this study was to explore patients' experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well-being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person-centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient-reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients' voice to be heard and thereby compose a basis for care.
Cancer family history is not systematically assessed during the cancer care trajectory. Palliative care may emerge as the last opportunity for health professionals to collect, from dying cancer patients, family history and biological samples that could inform relatives’ cancer risk assessment and management. At-risk relatives can then be offered genetic counseling and testing and preventive strategies if needed. Discussions on cancer heritability between patients, family members, and providers may become more frequent in palliative care due to increasing public awareness about advances in genomics and risks associated with a cancer family history.
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BACKGROUND: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients' perspectives. However, little is known about how patients' experience such interventions.
AIM: To explore advanced cancer patients' experiences with a structured early palliative care intervention, its acceptability and impact on the patients' life including influencing factors.
DESIGN: Qualitative content analysis of in-depth, semi-structured interviews.
SETTING/PARTICIPANTS: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of "Symptoms, End-of-life decisions, Network, Support," a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study.
RESULTS: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel "confronting" but with the right timing it can be confirming and facilitate family conversations. Patients' personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning.
CONCLUSION: Early palliative care interventions like "Symptoms, End-of-life decisions, Network, Support" may provoke emotions and feel "confrontational" often because this is the first time when issues about one's end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.
BACKGROUND: Aggressive end-of-life (EOL) care is associated with lower quality of life and greater regret about treatment decisions. Higher EOL costs are also associated with lower quality EOL care. Advance care planning and goals-of-care conversations ("EOL discussions") may influence EOL health-care utilization and costs among persons with cancer.
OBJECTIVE: To describe associations among EOL discussions, health-care utilization and place of death, and costs in persons with advanced cancer and explore variation in study measures.
METHODS: A systematic review was conducted using PubMed, Embase, and CINAHL. Twenty quantitative studies published between January 2012 and January 2019 were included.
RESULTS: End-of-life discussions are associated with lower health-care costs in the last 30 days of life (median US$1048 vs US$23482; P < .001); lower likelihood of acute care at EOL (odds ratio [(OR] ranging 0.43-0.69); lower likelihood of intensive care at EOL (ORs ranging 0.26-0.68); lower odds of chemotherapy near death (ORs 0.41, 0.57); lower odds of emergency department use and shorter length of hospital stay; greater use of hospice (ORs ranging 1.79 to 6.88); and greater likelihood of death outside the hospital. Earlier EOL discussions (30+ days before death) are more strongly associated with less aggressive care outcomes than conversations occurring near death.
CONCLUSIONS: End-of-life discussions are associated with less aggressive, less costly EOL care. Clinicians should initiate these discussions with patients having cancer earlier to better align care with preferences.
OBJECTIVE: Quality communication is an important aspect of advance care planning (ACP). This study evaluates a certification program that trains lay people in communication skills to support community-based ACP conversations.
METHODS: The program was developed with an emphasis on communication skills training. The testing of the program included ACP Guides and conversation partners, who were hospice volunteers, to assess the use of communication skills in ACP conversations. The evaluation used direct observations of conversations between trained ACP Guides and conversation partners as well as semi-structured interviews with those trained to become ACP Guides and those participating in the conversation.
RESULTS: Twenty-two ACP Guides participated in the testing phase with a retention rate of 100% completing all 4 sessions. The RELATE model of communication emerged during program development and testing. Evaluation of 15 ACP Guides having ACP conversations found that trained ACP Guides could use the RELATE model of communication to support ACP conversations.
CONCLUSION: A community-academic partnership developed an ACP Community Guides Program that trained individuals to have community-based ACP conversations. Next steps include additional testing of the program and RELATE in small numbers, especially among minority populations, to evaluate acceptability and usability of this approach.
PRACTICE IMPLICATIONS: Laypersons with concrete communication skills can facilitate effective peer-to-peer ACP conversations.
BACKGROUND: End-of-life (EOL) care for Latinos with chronic illness is a critically important problem. Latinos with chronic illness suffer worse health outcomes and poorer quality of care due to various issues occurring in care delivery systems. Latinos are less likely than non-Hispanic whites to prepare an advance directive (AD) for health-care decision-making that impacts treatment decisions for when EOL is near. Advance care planning (ACP) interventions tailored specifically for Latinos have rarely been implemented.
OBJECTIVE: The primary aim examines whether a motivational interviewing (MI) intervention increased rates of AD documentation among older Latinos. The secondary aim was to examine whether MI improved communication with providers and family members.
METHODS: We pilot tested a randomized controlled trial with older Latinos >50 years with one or more chronic illnesses, including cancer. Participants were randomly assigned to usual care (UC) receiving ACP education alone versus treatment (TX), which received ACP education, plus MI counseling including interactive decisional support, emotional support, and barrier navigation.
RESULTS: Results of logistic regression indicate TX group participants were significantly more likely to document an AD than UC, however were less ready to talk with health-care providers or family members. Those reporting navigational barriers for talking about dying is difficult showed a significant negative relationship for AD completion even with significant intervention effects.
CONCLUSION: When using MI to motivate individuals toward ACP EOL conversations other factors are important to consider. Further research is needed, especially among Latinos to understand best practices for ACP education and counseling for EOL care.