Background: The COVID-19 pandemic has created an environment in which existence is more fragile and existential fears or terror rises in people.
Objective: Managing existential terror calls for being mature about mortality, something with which palliative care providers are familiar and in need of greater understanding.
Methods: Using a case to illustrate, we describe existential terror, terror management, and existential maturity and go on to outline how existential maturity is important for not only the dying and the grieving but for also those facing risk of acquiring COVID-19.
Results: Next, we describe how essential components in attaining existential maturity come together. (1) Because people experience absent attachment to important people as very similar to dying, attending to those experiences of relationship is essential. (2) That entails an internal working through of important relationships, knowing their incompleteness, until able to “hold them inside,” and invest in these and other connections. (3) And what allows that is making a meaningful connection with someone around the experience of absence or death. (4) We also describe the crucial nature of a holding environment in which all of these can wobble into place.
Discussion: Finally, we consider how fostering existential maturity would help populations face up to the diverse challenges that the pandemic brings up for people everywhere.
Purpose: 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.
Methods: 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.
Results: 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.
Conclusions: 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.
Context: We previously developed the reintegration model to describe the adjustment process for individuals at the end of life. However, caregivers and loved ones also require significant support and must work to reimagine their relationship with one another.
Objectives: We sought to develop a dyadic version of the reintegration model that delineates key parts of the adjustment process that occur between the patient and another significant person rather than as two separate individuals.
Methods: We refined an initial conceptual model of this dyadic process with findings from a narrative literature review on spousal dyadic mutuality. We assessed emergent themes regarding dyadic adjustment from the literature for their fit with our original reintegration model and through consensus discussion, applied the findings to a final proposed conceptual model of dyadic reintegration at the end of life.
Results: Examples of dyadic adjustment in the literature relate to the comprehension, creative adaptation, and reintegration processes described in the original reintegration model. Evidence also supported three substantive additions in the new dyadic model: (1) shared understanding that the harmony of the dyad is interrupted; (2) consideration of the "we" (the dyad) and the "I" (the individual) in mutual reflection to create a shared narrative; and (3) emphasis on relationship as a factor impacting adjustment processes.
Conclusions: Available evidence supports interdependent relationships between members of dyads for the three adaptation processes of comprehension, creative adaptation, and reintegration in the model. This dyadic reintegration model can be useful in clinical practice to support dyads facing life-limiting illness.
Relationships of care for those facing illness are inherent to the practice of medicine. Palliative care provides interpersonal space to patients and families that helps them face serious illness and dying. We consider therapeutic holding uniquely critical in palliative care but see it as applying in varied forms throughout medicine. Its optimization requires a deep understanding of its nature. We use theoretical foundations of psychodynamic therapy, which uses the therapeutic relationship as its sole intervention, to identify the key elements of palliative care's therapeutic holding. We draw together six major concepts to do so. Using a fairly typical case, we illustrate how a palliative care team that included a psychodynamic therapist created therapeutic holding. This article came as part of a discussion group about psychodynamic cases involving serious illness and evolved in discussion with the rest of the authors. Northwestern's Institutional Review Board (IRB) exempted this project. This case is anonymized; sociodemographic and specific illustrations are changed. This case exemplifies how psychodynamic theory discerns and describes elements of palliative care's therapeutic holding. The case further illuminates the important place of therapeutic holding in effective palliative care and shows how psychodynamic therapy can help. We urge further research on therapeutic holding in palliative care.
BACKGROUND: Our goal is to improve psychosocial and spiritual care outcomes for elderly patients with cancer by optimizing an intervention focused on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document. These tasks are central needs for elderly patients with cancer. Dignity therapy (DT) has clear feasibility but inconsistent efficacy. DT could be led by nurses or chaplains, the 2 disciplines within palliative care that may be most available to provide this intervention; however, it remains unclear how best it can work in real-life settings.
OBJECTIVE: We propose a randomized clinical trial whose aims are to (1) compare groups receiving usual palliative care for elderly patients with cancer or usual palliative care with DT for effects on (a) patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness); and (b) processes of delivering palliative spiritual care services (satisfaction and unmet spiritual needs); and (2) explore the influence of physical symptoms and spiritual distress on the outcome effects (dignity impact and existential tasks) of usual palliative care and nurse- or chaplain-led DT. We hypothesize that, controlling for pretest scores, each of the DT groups will have higher scores on the dignity impact and existential task measures than the usual care group; each of the DT groups will have better peaceful awareness and treatment preference more consistent with their cancer prognosis than the usual care group. We also hypothesize that physical symptoms and spiritual distress will significantly affect intervention effects.
METHODS: We are conducting a 3-arm, pre- and posttest, randomized, controlled 4-step, stepped-wedge design to compare the effects of usual outpatient palliative care and usual outpatient palliative care along with either nurse- or chaplain-led DT on patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness). We will include 560 elderly patients with cancer from 6 outpatient palliative care services across the United States. Using multilevel analysis with site, provider (nurse, chaplain), and time (step) included in the model, we will compare usual care and DT groups for effects on patient outcomes and spiritual care processes and determine the moderating effects of physical symptoms and spiritual distress.
RESULTS: The funding was obtained in 2016, with participant enrollment starting in 2017. Results are expected in 2021.
CONCLUSIONS: This rigorous trial of DT will constitute a landmark step in palliative care and spiritual health services research for elderly cancer patients.
Dignity therapy (DT) provides, for patients with a serious illness, a guided sharable life review through a protocolized interview and the creation of a legacy document. Evidence is mounting in support of the use of DT for patients with a serious illness; however, it is unclear whether DT has effects on family members. The purpose of this article was to provide a systematic literature review of the effects DT has on family members of patients who receive DT. Using a PubMed search with key terms of “Chochinov,” “family,” and “dignity care,” a total of 18 articles published between January 2000 and July 2016 were identified and included in this review. This systematic review was helpful in identifying the strength of the evidence and gaps in the literature focused on DT and expected or actual effects on the DT recipient or family members. Findings identify the need to conduct further research related to the feasibility, acceptability, and effects of DT for family members. Future research should focus on understanding whether and how family members may benefit from receiving the legacy document and whether the timing of family member involvement plays a role in the outcomes of DT.
BACKGROUND: Little is known about how decision-making conversations occur during pediatric intensive care unit (PICU) family conferences (FCs).
OBJECTIVE: Describe the decision-making process and implementation of shared decision making (SDM) during PICU FCs.
DESIGN: Observational study.
SETTING/SUBJECTS: University-based tertiary care PICU, including 31 parents and 94 PICU healthcare professionals involved in FCs.
MEASUREMENTS: We recorded, transcribed, and analyzed 14 PICU FCs involving decision-making discussions. We used a modified grounded theory and content analysis approach to explore the use of traditionally described stages of decision making (DM) (information exchange, deliberation, and determining a plan). We also identified the presence or absence of predefined SDM elements.
RESULTS: DM involved the following modified stages: information exchange; information-oriented deliberation; plan-oriented deliberation; and determining a plan. Conversations progressed through stages in a nonlinear manner. For the main decision discussed, all conferences included a presentation of the clinical issues, treatment alternatives, and uncertainty. A minority of FCs included assessing the family's understanding (21%), assessing the family's need for input from others (28%), exploring the family's desired decision-making role (35%), and eliciting the family's opinion (42%).
CONCLUSIONS: In the FCs studied, we found that DM is a nonlinear process. We also found that several SDM elements that could provide information about parents' perspectives and needs did not always occur, identifying areas for process improvement.
Dans cette enquête, une petite proportion de patients en phase terminale considèrent sérieusement l'euthanasie ou le suicide médicalement assisté pour eux-mêmes. Sur quelques mois, les patients ont changé d'avis : les patients ayant des symptômes dépressifs étaient plus susceptibles de changer d'avis que les autres.
Après avoir réalisé une revue de littérature sur des guides relatifs aux traitements des maladies à pronostic létal, la Fondation Américaine des Hospices a formé un groupe de travail; celui-ci a eu pour objectif d'étudier l'introduction des concepts palliatifs dans ces recommandations. L'article décrit les étapes de cette réflexion : questions posées, proposition d'un schéma présenté dans un tableau.
La compétence clinique, la disponibilité pour former et rassurer calmement sont essentielles pour l'aide aux patients et aux familles dans les dernières heures de la vie. Cet article décrit ce qui ce passe habituellement, ainsi que les modes de prise en charge. Les principes de la prise en charge sont identiques à domicile et dans les institutions sanitaires. Cependant, le décès dans un établissement exige des ajustements inhabituels pour garantir l'intimité, le respect des particularités culturelles et la communication. La famille et les autres professionnels doivent être informés sur ce qu'ils doivent faire et ce à quoi s'attendre. Les soins ne sont pas terminés si la famille n'a pas été accompagnée dans ses réactions de deuil, de même que les cas de deuils compliqués. Les soins en fin de vie sont une compétence fondamentale.