End Of Life Conversations Research Articles

"Death is Not a Dirty Word:" A Qualitative Study of Emergency Clinician End-of-Life Communication.

Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is heterogenous, clinician expertise in EOL communication is essential to providing family-centered care. In this study, we explored PED physician and nurse experiences with communication when eliciting EOL values, including factors specified to the PED environment, clinician perceptions of family supports and preferences, and clinicians' self-reflection of their skills and challenges in this sphere. We performed a prospective qualitative study using semistructured interviews of PED physicians and nurses recruited from a quaternary care center. Thematic content analysis was performed on the transcribed interviews to identify codes and, ultimately, themes. We interviewed 17 emergency department clinicians, including 10 physicians and 7 nurses. Thematic content analysis revealed 6 salient themes. The first theme related to contextual factors of the emergency department environment. Two additional themes related to patient and family characteristics, including unique patient and family factors and clinician interpretation of parental/family needs. Lastly, we found 3 clinician-focused themes including knowledge gaps in EOL communication, communication styles and priorities in EOL conversations with families, and coping with ethical challenges. PED clinicians report communication-related challenges to providing optimal care for families and patients with life-limiting diagnoses. Participants self-identified gaps in communication skills in this area. Future studies should focus on clinician educational interventions on the basis of this needs assessment and include family perspectives to develop best practice.

A Resident-Led Quality Improvement Initiative to Increase End-of-Life Planning in Primary Care.

Background Despite many benefits of end-of-life (EOL) planning, only 1 in 3 adults has EOL documentation, with low rates in resident primary care clinics as well. Objective To increase clinic completion of life-sustaining treatment (LST) notes and advance directives (AD) for veterans at highest risk for death. Methods The setting was a Veterans Affairs (VA) internal medicine primary care clinic. All clinic residents in the 2021-2022 academic year and all clinic patients identified through a VA risk-stratification tool as highest risk for death were included. Baseline AD and LST completion rates were determined through manual chart review. Our interventions included 2 hours of teaching to increase resident knowledge of EOL planning and a systematic process improvement to complete EOL planning appointments. Outcomes assessed included anonymous resident pre- and post-surveys of self-assessed knowledge and comfort with EOL conversations, as well as rates of LST and AD completion determined through serial chart review. Results In the 2021-2022 academic year, 22 residents (100%) and 54 patients were included. Post-intervention surveys (n=22, 100%) showed improved self-assessed knowledge of EOL concepts and comfort with patient discussions (median Likert increase 3 to 4). The number of residents who completed an EOL planning visit increased from 9 of 22 (41%) to 15 (68%). LST completion increased from 9 of 54 (17%) to 29 (54%), and AD completion increased from 18 of 54 (33%) to 33 (61%). Conclusions A brief teaching intervention to prepare residents for comprehensive EOL visits combined with process improvement to offer EOL planning visits improved self-reported knowledge and comfort and completion of EOL visits.

Legacy in End-of-Life Care: A Concept Analysis.

Comprehending the significance of legacy in end-of-life (EoL) situations helps palliative care professionals enhance person-centered outcomes for those with a life-threatening illness and their families. Our purpose was to conduct a concept analysis of legacy in EoL care. By employing Walker and Avant's approach, we identified the concept's defining characteristics. Subsequently, we established the antecedents, consequences, and empirical referents. After conducting a thorough review of titles and abstracts, a total of 30 publications were analyzed. These articles were sourced from three databases (CINAHL, Medline via PubMed, and Scopus) from 2002 to 2023. Our analysis identified several core attributes of legacy: (a) leave behind something of value that transcends death; (b) determine how people want to be remembered; (c) build and bestow across generations; (d) integrate advance care planning through EoL conversations and shared decision-making; and (e) develop strategies of dignity-conserving care. The consequences are related to improvements in spiritual and subjective well-being; coping with inevitable EoL existential issues; decreases in EoL suffering; engendering self-awareness, hope, gratitude, and peace; achieving and maintaining dignity; creating good memories; promoting mutually constructive and transformative relationships; and fostering the adjustment of bereaved people. Nevertheless, further effort is required to implement the key attributes of legacy that form the basis for creating legacy-oriented interventions near the EoL.

Living and dying between cultural traditions in African & Caribbean Heritage families: a constructivist grounded theory

BackgroundEthnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage. This is a voice not well represented in the current debate on improving end-of-life outcomes.MethodsUsing Charmaz’s constructivist grounded theory approach, a purposive sample of elders, adult-children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted and analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction.ResultsElders (n = 4), adult-children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created. The constructs are (a) Preparing for death but not for dying (b) Complexity in traditions crosses oceans (c) Living and dying between cultures and traditions (d) There is culture, gender and there is personality (e) Watching the death of another prompts conversations. (f) An experience of Hysteresis.DiscussionAfrican and Caribbean cultures celebrate preparation for after-death processes resulting in early exposure to and opportunities for discussion of these processes. Migration results in reforming of people’s habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and related decision making.ConclusionsRecognising the impact of migration on the roles of different family members and the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families of minority ethic heritage facing serious illness. A public health approach focusing on enabling adult-children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.

Fluid therapy is associated with lower care quality and higher symptom burden during last days of life of patients with cancer – a population-based register study

BackgroundParenteral fluid (PF) therapy of patients in end-of-life (EOL) is controversial. The purpose of this study was to assess associations between PF, quality of the EOL care process and symptom burden in dying cancer patients, using a population-based approach.MethodsThis was a nationwide retrospective register study of all adult cancer deaths with documented information on PF in the last 24 h of life as reported to the Swedish Register of Palliative Care during a three-year period (n = 41,709). Prevalence and relief of symptoms during the last week of life as well as EOL care process quality indicators were assessed in relation to PF in those patients who had a documented decision to focus on EOL care (immediately dying, n = 23,112). Odds ratios were calculated, adjusting for place of death (hospital vs. non-hospital).ResultsPF was administered to 30.9% of immediately dying patients in hospitals compared to 6.5% outside of hospitals. PF was associated with a higher likelihood for breathlessness and nausea. In patients screened for EOL symptoms with a validated instrument, PF was inversely associated with the likelihood of complete relief of breathlessness, respiratory secretions, anxiety, nausea and pain. Several palliative care quality indicators were inversely associated with PF, including EOL conversations and prescriptions of injectable drugs as needed. These associations were more pronounced in hospitals.ConclusionsParenteral fluid therapy in the last 24 h of life was associated with inferior quality of the EOL care process and with increased symptom burden in imminently dying cancer patients.

Collaborative advance care planning in palliative care: a randomised controlled trial

ObjectiveAn effective tool for establishing concordant end-of-life (EOL) care in patients with cancer is advance care planning (ACP). However, various barriers, including psychological obstacles, hamper the access to ACP. Therefore,...

End-of-life conversations for the older person: A concept analysis.

The aim of this concept analysis is to seek clarity as to what end-of-life conversations involve by developing a clear working definition and using model cases to conceptualise the defining attributes of an end-of-life conversations with the older person. Walker and Avant's eight step approach to Concept Analysis. Four databases were searched, including PubMed, CINAHL, PsycINFO, and Scopus. A total of 339 publications were identified with 30 papers meeting the inclusion criteria and put forward for the final conceptual analysis. The defining attributes associated with end-of life conversations included (1) an ongoing process of older person empowerment, (2) discussion's concerning values and preferences concerning end-of-life issues, and (3) maintaining an open dialogue between all concerned individuals. Antecedents were associated with the older person is their readiness to talk openly about death and dying. Consequences were identified as having a better understanding of what death and dying may mean to the older person in a more specific manner. End-of-life conversations are vital in understanding an individual's values and preferences at the end of life, and yet, the concept of the end-of-life conversation has not been well defined in the literature. End-of-life conversations with the older person encompass ongoing discussions and maintaining open dialogue around end-of-life care while developing strategies to promote individual empowerment in making informed choices. Using a conceptual model, aides in addressing aspects of end-of-life conversations and an acknowledgment of the dynamic process of end-of-life conversations.

End-of-life conversations when transitioning to end-of-life care in residential care: A web-based questionnaire survey of registered nurses’ expressed experiences

Older individuals within residential care (RC) may have palliative care needs that intensify along the path of their illness to death. An end-of-life (EOL) conversation follows when transitioning from one care to another, to plan for future care, to consider the patient's wishes, and to avoid unnecessary suffering for both patient and family. The aim of this study was to describe registered nurses’ (RNs) experiences of EOL conversations when transitioning to EOL care in RC. The design of this study was a survey study with questionnaire data from RNs working in RC ( n = 71), analyzed with descriptive statistics and using qualitative content analysis. This study is reported in accordance with the COREQ checklist. Three main categories and seven subcategories were identified. The first category was ‘Deficiencies in EOL conversations’ with the subcategories ‘EOL conversations at too late a stage’ and ‘Physicians’ absence in collaboration concerning EOL conversations’. The second category was ‘Nurse’s role in EOL conversations’ with the subcategories ‘Initiate EOL conversations’, ‘Cohesive link between stakeholders concerning EOL conversations’, and ‘Carry out EOL conversations’. The third category was ‘Family involvement in end of life’ with the subcategories ‘Family members’ participation in EOL conversation’ and ‘Unrealistic expectations at EOL conversation’. RNs at RC take a great responsibility regarding EOL conversations by often both initiating and carrying out the conversations. Such conversations need to be initiated at an early stage to enable patients to receive information or express their own wishes, and to have time to create good relationships with family members so they feel informed and involved.

'Confidence and fulfillment': a qualitative descriptive study exploring the impact of palliative care training for long-term care physicians and nurses.

To explore the impact of a 2-day, in-person interprofessional palliative care course for staff working in long-term care (LTC) homes. A qualitative descriptive study design was employed. LTC staff who had participated in Pallium Canada's Learning Essential Approaches to Palliative Care LTC Course in Ontario, Canada between 2017 and 2019 were approached. Semi-structured interviews were conducted, using an online videoconferencing platform in mid-2021 in Ontario, Canada. These were done online, recorded, and transcribed. Data were coded inductively. Ten persons were interviewed: four registered practical nurses, three registered nurses, one nurse practitioner, and two physicians. Some held leadership roles. Participants described ongoing impact on themselves and their ability to provide end-of-life (EOL) care (micro-level), their services and institutions (meso-level), and their healthcare systems (macro-level). At a micro-level, participants described increased knowledge and confidence to support residents and families, and increased work fulfillment. At the meso-level, their teams gained increased collective knowledge and greater interprofessional collaboration to provide palliative care. At the macro level, some participants connected with other LTC homes and external stakeholders to improve palliative care across the sector. Training provided much-needed preparedness to respond to the impact of the COVID-19 pandemic, including undertaking advance care planning and EOL conversations. The pandemic caused staff burnout and shortages, creating challenges to applying course learnings. The impact of palliative care training had ripple effects several years after completing the training, and equipped staff with key skills to provide care during the COVID-19 pandemic. Palliative care education of staff remains a critical element of an overall strategy to improve the integration of palliative care in LTC.

"Gives peace of mind" - Relatives' perspectives of end-of-life conversations.

Planning for end-of-life (EOL) and future treatment and care through advance care planning (ACP) is being increasingly implemented in different healthcare settings, and interest in ACP is growing. Several studies have emphasized the importance of relatives participating in conversations about wishes for EOL and being included in the process. Likewise, research has highlighted how relatives can be a valuable resource in an emergency setting. Although relatives have a significant role, few studies have investigated their perspectives of ACP and EOL conversations. This study explores relatives' experiences of the benefits and disadvantages of having conversations about wishes for EOL treatment. Semi-structured telephone interviews were held with 29 relatives who had participated in a conversation about EOL wishes with a patient and physician 2 years prior in a variety of Danish healthcare settings. The relatives were interviewed between September 2020 and June 2022. Content analysis was performed on the qualitative data. The interviews revealed two themes: "gives peace of mind" and "enables more openness and common understanding of EOL." Relatives found that conversations about EOL could help assure that patients were heard and enhance their autonomy. These conversations relieved the relatives of responsibility by clarifying or confirming the patients' wishes, and they also made the relatives reflect on their own wishes for EOL. Moreover, they helped patients and relatives address other issues regarding EOL and made wishes more visible across settings. The results indicate that conducting conversations about wishes for EOL treatment and having relatives participate in those conversations were perceived as beneficial for both relatives and patients. Involving relatives in ACP should be prioritized by physicians and healthcare personnel when holding conversations about EOL.

Better than expected? Predictors of coping with expectation violations in the communication about death and dying.

End-of-life (EOL) communication is often avoided, especially among young adults. Negative expectations concerning EOL conversations with relatives or significant others are one major reason. To investigate how best to violate negative expectations concerning EOL conversations by identifying predictors of coping with expectation violations in this context. Vignettes describing expectation violations in the context of EOL communication were presented to a sample of 261 university students. In a first experiment, the credibility of the expectation-disconfirming information was manipulated. In a second experiment, the valence of the disconfirming evidence was manipulated. As outcome measures, the subjective likelihood of two different responses to the expectation violation was assessed: (1) ignoring the disconfirming evidence (immunization) and (2) changing expectations (accommodation). Overall, participants experiencing a worse-than-expected event showed more immunization [F(1, 257) = 12.15, p < 0.001, ηp = 0.05], while participants experiencing a better-than-expected event showed more accommodation [F(1, 257) = 30.98, p < 0.001, ηp = 0.11]. Participants with higher fear of death [F(1, 257) = 12.24, p < 0.001, ηp = 0.05] as well as higher death avoidance tendencies [F(1, 257) = 17.16, p < 0.001, ηp = 0.06] showed less accommodation in response to a better-than-expected event. In general, young adults appear to update their expectations quickly in response to unexpectedly positive experiences in the context of EOL communication. However, individuals with higher fear of death and higher death avoidance tendencies appear to be at higher risk of maintaining negative expectations despite disconfirming evidence.

“I don’t see the whole picture of their health”: a critical ethnography of constraints to interprofessional collaboration in end-of-life conversations in primary care

ContextInterprofessional collaboration is recommended in caring for frail older adults in primary care, yet little is known about how interprofessional teams approach end-of-life (EOL) conversations with these patients.ObjectiveTo understand the factors shaping nurses’ and allied health clinicians’ involvement, or lack of involvement in EOL conversations in the primary care of frail older adults.Methods/settingA critical ethnography of a large interprofessional urban Family Health Team in Ontario, Canada. Data production included observations of clinicians in their day-to-day activities excluding direct patient care; one-to-one semi-structured interviews with clinicians; and document review. Analysis involved coding data using an interprofessional collaboration framework as well as an analysis of the normative logics influencing practice.ParticipantsInterprofessional clinicians (n = 20) who cared for mildly to severely frail patients (Clinical Frailty Scale) at the Family Health Team.ResultsFindings suggest primary care nurses and allied health clinicians have the knowledge, skills, and inclination to engage frail older adults in EOL conversations. However, the culture of the clinic prioritizes biomedical care, and normalizes nurses and allied health clinicians providing episodic task-based care, which limits the possibility for these clinicians’ engagement in EOL conversations. The barriers to nurses’ and allied health clinicians’ involvement in EOL conversations are rooted in neoliberal-biomedical ideologies that shapes the way primary care is governed and practiced.ConclusionsOur findings help to explain why taking an individual-level approach to addressing the challenge of delayed or avoided EOL conversations, is unlikely to result in practice change. Instead, primary care teams can work to critique and redevelop quality indicators and funding models in ways that promote meaningful interprofessional practice that recognize the expertise of nursing and allied health clinicians in providing high quality primary care to frail older patients, including EOL conversations.

Simulation for communication training in neonatology

Communication skills training is a core competency for neonatal-perinatal medicine (NPM) fellows, yet many neonatology fellowship programs do not have formal communication skills curricula. Since the late 1990s, experiential learning that includes role-play and simulation has become the standard for communication training. NPM fellows who receive simulation-based communication skills training report greater comfort with difficult conversations in the NICU. Most communication skills studies in neonatology focus on antenatal counseling, with some studies regarding family meetings and end of life conversations. Published examples for simulation-based communication skills curricula exist, with ideas for adapting them to meet the needs of local resources.

Survivors’ perspectives on saying goodbye: Implications for end-of-life engagement across the lifespan and grieving process

Family members are often unaware of their loved ones’ final wishes and underestimate the need to talk about them before parents reach end-of-life (EOL). The benefits of engaging in EOL conversations alleviate needless suffering and can allow an opportunity to say goodbye in a meaningful way. We examined final conversations 13 adults recalled having with their aging parents through the lens of the opportunity model for presence (OMP) during the EOL process, a communication process model based on engagement in the dying process from diagnosis through bereavement, to understand the process from the survivor’s perspective, looking at content of conversations and where they occurred in the dying process. Findings illustrate final conversations that align with the socio-cultural space of the OMP before the knowledge that a parent was dying, and when entering imminent death engaging in the critical moments, have implications for the grief and bereavement.

Advance Care Planning Among Patients With Amyotrophic Lateral Sclerosis: Patient Perspectives on Goals of Care Conversations.

Little is known regarding circumstances surrounding advanced care planning (ACP) for patients with amyotrophic lateral sclerosis (ALS). We aim to describe preferences, and perspectives surrounding ACP in patients with ALS. We conducted a survey of patients with ALS. Survey questions were related to advance directive completion and ACP discussions regarding end-of-life (EoL) choices. 49 surveys were included. Patients have given thought to advance directives, goals of care, and EoL treatments within months of diagnosis (Median: 1 month; IQR: .6 - 3 months). Twenty-seven opened dialogue with spouses, 24 with family members, 19 with health professionals and 16 with their lawyer. Eighty percent were comfortable discussing advance directives and power of attorney while fewer (70%) are less comfortable regarding specific aspects of care such as CPR or invasive ventilation. Only one barrier to discussion was identified with one patient reporting they did not wish to talk about the topic. There was no significant correlation between timing of diagnosis and whether an EoL discussion had occurred (τb = .23, P = .14: n = 42). Level of feeling informed was significantly associated with making EoL decisions for CPR, legal arrangements for a decision maker and completion of living will or AD. In this small cohort, a substantial proportion of ALS patients initiated EoL conversations early. When feeling informed, patients were more likely to make specific EoL choices. Findings suggest an opportunity for providers to help facilitate conversations, ensuring patient wishes.

Church Matters: Education About Advance Care Planning and End-of-Life Care in Black Churches.

For many African American adults, the church has the potential to be a place to receive education about advance care planning (ACP). The current study was conducted to (1) identify the frequency of ACP conversations and caregiving and (2) evaluate interest in church-placed end-of-life (EOL) care education. Data were collected from parishioners in 2 African American churches in an urban city in the mid-Atlantic region of the United States. Individuals older than 50 years reported a higher frequency of caregiving ( P < .001) and were more likely to have talked to someone about EOL care ( P < .001) than individuals younger than 50 years. Nearly all respondents considered EOL conversations "important" or "very important" (99.1%) and wanted more information about EOL conversations available via the church (95.8%). Our findings suggest EOL conversations are happening within families and with health care providers, but they are not documented in ways (eg, in writing) that research has focused on previously. Future EOL education will focus more on the importance of documenting and sharing EOL care wishes with family and health care professionals.

Investigating the Relationship between Fear of Failure and the Delivery of End-of-Life Care: A Questionnaire Study

To investigate whether fear of failure (FOF) influences a clinician's perception of how confident and comfortable they are in their delivery of end-of-life (EOL) care. Cross-sectional questionnaire study with recruitment of physicians and nurses across two large NHS hospital trusts in the UK and national UK professional networks. A total of 104 physicians and 101 specialist nurses across 20 hospital specialities provided data that were analysed using a two-step hierarchical regression. The study validated the PFAI measure for use in medical contexts. Number of EOL conversations, gender, and role were shown to impact confidence and comfortableness with EOL care. Four FOF subscales did show a significant relationship with perceived delivery of EOL care. Aspects of FOF can be shown to negatively impact the clinician experience of delivering EOL care. Further study should explore how FOF develops, populations that are more susceptible, sustaining factors, and its impact on clinical care. Techniques developed to manage FOF in other populations can now be investigated in a medical population.

How the more life discourse constrains end-of-life conversations in the primary care of medically frail older adults: A critical ethnography

There is growing emphasis for primary care clinicians to initiate and engage in end-of-life (EOL) conversations with medically frail older adults. However, EOL conversations happen most often when death is imminent or are avoided altogether. The objective of this study was to understand the socio-political forces shaping EOL conversations between clinicians, medically frail older adults and/or their care partners within an urban primary care setting, a Family Health Team in Ontario, Canada. We conducted an eight-month critical ethnography in 2019 involving observations and interviews of clinicians, patients, and care partners (n ​= ​35). Analyzing this data for discourses and power-knowledge systems we found that two discourses, frailty and more life shape EOL conversations in this setting. More life discourse disrupts EOL conversations by making it more difficult to talk about decline and dying as well as personal goals. Biomedicine and clinical practice guidelines comprised the two major power-knowledge systems that increase the influence of more life in this setting as well as the norm of seeking longevity. Improving EOL conversations is complex and requires addressing the power-knowledge systems that perpetuate more life as well as a discursive shift towards prioritizing relationships and people's life worlds. Primary care as a specialty can critically reflect on the ways it is entrenched in a culture of care that valorizes more life and (re)create clinical practice guidelines and evaluations to align with person-centredness more meaningfully. Future research should involve patients, care-partners, and interprofessional clinicians to co-create approaches to care that can better accommodate frailty talk.

Clinician Communication in Hospice: Constructions of Reality Throughout the End-of-Life Process.

The current study examined qualitative data from hospice clinicians' perspectives on language, surrounding end-of-life (EOL), to understand challenges and opportunities for constructing a trajectory of communication leading towards a good death experience. Findings from two focus groups with nine clinicians' and 12 individual interviews, four of which were follow up interviews after the focus groups, were guided by framework analysis and revealed three themes, constructing language choices, roles and responsibilities, and socio-cultural considerations. We used the Opportunity Model for Presence during the End-of-Life Process (OMP-EOLP) to make sense of the findings and discuss implications for language use throughout the EOL process. We argue additional efforts should be made in recognizing the value of presence checks, re-constructing advance care planning, and utilizing different forms of media as an educational tool and connection mechanism for clinicians with patients and families to achieve a timely engagement of EOL conversations for all healthcare participants.

Interventions for interpersonal communication about end of life care between health practitioners and affected people.

Interventions for interpersonal communication about end of life care between health practitioners and affected people.