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Key Clinical PointsNavigating and Communicating about Serious Illness and End of LifePartnering with patients as they navigate serious illness requires effectively communicating prognostic information while responding to the emotions generated by the conversation.Clinicians should expect, and have the skill, to engage in a continuum of conversations that allow patients to integrate prognostic information cognitively and emotionally.Patients oscillate between expressions of intense hopefulness and more realistic aspirations; this a normal and expected part of the process.Facilitating patient exploration of their hopes and worries allows them to grieve, understand their priorities, and build coping skills for living with a serious illness.As patients integrate prognostic information, clinicians should discuss what is most important to the patient given the likely illness trajectory and incorporate these goals and values into a recommendation about medical care, including care at the end of life.

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.

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. Analysis of a prior six-site, randomized controlled trial with a stepped-wedge design and chaplains or nurses delivering the DT. 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. 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.

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.

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. The objective of this article is to describe a detailed method for DT therapist training. 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. 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. 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.

A good death should mean making the last weeks of life valuable and meaningful. Some of the steps that physicians and caregivers can take to ensure that terminally ill patients die a good death are discussed.

Decision making is a complex process and it is particularly challenging to make decisions with, or for, patients who are near the end of their life. Some of those challenges will not be resolved - due to our human inability to foresee the future precisely and the human proclivity to change stated preferences when faced with reality. Other challenges of the decision-making process are manageable. This commentary offers a set of approaches which may lead to progress in this field. One clearly desirable approach can and should be used more often than it is: the routine inclusion of discussions about the goals of care and documentation with all patients who have a poor prognosis. The match between a patient's goals and the care received should be the gold standard for quality palliative care. Planning for future situations is necessary but hard. In order to achieve efficient elicitation and documentation of advance care planning, research is needed on each individual's thresholds for transitioning from curative to palliative intent and on the trajectory of changed preferences when illness occurs. Another clearly desirable approach is the documentation and use of community preferences, so that proxies making decisions without guidance from the patient can at least know what the majority of people considering similar situations chose to do. Part of the challenge of achieving 'quality dying' may have to do with the still current (mainly Western) tendency to a death-denying culture and the inability of dying people to enter into the dying role. Awareness of the tasks of the dying role and the provision of time and space for those tasks during the delivery of medical care is essential. Medicine needs to continue to enhance the existential maturity of our profession, our patients and the cultures in which we practice. This state of mind should provide for decisions made with a more settled acceptance of mortality and with more awareness of the necessary connection to our survivors and next generation that mortality creates. Specific interventions, such as Dignity Therapy and advance care planning, may aid this state of mind.

Background Medicine has long acknowledged the role of chaplains in healthcare, but there is little research on the relationship between chaplaincy care and health outcomes. The present study examines the association between chaplaincy services and end-of-life care service choices. Methods HealthCare Chaplaincy purchased the AHA survey database from the American Hospital Association. The Dartmouth Atlas of Health Care database was provided to HealthCare Chaplaincy by The Dartmouth Institute for Health Policy & Clinical Practice, with the permission of Dartmouth Atlas Co-Principal Investigator Elliot S. Fisher, M.D., M.P.H. The Dartmouth Atlas of Health Care is available interactively on-line at http://www.dartmouthatlas.org/ . Patient data are aggregated at the hospital level in the Dartmouth Atlas of Health Care. IRB approval was not sought for the project because the data are available to the public through one means or another, and neither database contains data about individual patients, i.e. all the variables are measures of hospital characteristics. We combined and analyzed data from the American Hospital Association’s Annual Survey and outcome data from The Dartmouth Atlas of Health Care in a cross-sectional study of 3,585 hospitals. Two outcomes were examined: the percent of patients who (1) died in the hospital, and (2) were enrolled in hospice. Ordinary least squares regression was used to measure the association between the provision of chaplaincy services and each of the outcomes, controlling for six factors associated with hospital death rates. Results and discussion The analyses found significantly lower rates of hospital deaths (β = .04, p  < .05) and higher rates of hospice enrollment (β = .06, p  < .001) for patients cared for in hospitals that provided chaplaincy services compared to hospitals that did not. Conclusions The findings suggest that chaplaincy services may play a role in increasing hospice enrollment. This may be attributable to chaplains’ assistance to patients and families in making decisions about care at the end-of-life, perhaps by aligning their values and wishes with actual treatment plans. Additional research is warranted.

Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians. This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age ≥65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2. Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the W group. Phase 2: We incorporated ethnic group-specific recommendations for the culturally based PC consult into the standard PC consult. Phase 3: We tested feasibility and acceptability of the ethnically specific PC consult on 18 of 32 eligible patients. The telehealth system worked well. PC MD implementation fidelity was 98%. Most patients were non-verbal and could not rate satisfaction with consult; however, caregivers were satisfied or very satisfied. Hospital leadership supported program implementation, but hospitalists only referred 18 out of 28 eligible patients. The first culturally based PC consult program in the United States was developed in partnership with AA and W Southern rural community members. This program was feasible to implement in a small rural hospital but low referral by hospitalists was the major obstacle. Program effectiveness is currently being tested in a randomized clinical trial in three southern, rural states in partnership with hospitalists. This method can serve as a model that can be replicated and adapted to other settings and with other ethnic groups.

Dying patients frequently have important and wide-ranging needs for assistance in addition to the medical care received from physicians and hospitals. Previous studies have documented that a majority of terminally ill patients require assistance, including home nursing care, help with transportation, homemaking services, and personal care; that many have unmet needs for care; and that the families of dying patients take on substantial burdens in caring for them. 1 – 10 Little is known, however, about the patterns of assistance to terminally ill patients. We do not know what components of the need for care are met by family members, paid care . . .