Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code.
Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments.
Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method.
Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences.
Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.
Objectives: To set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life.
Design: Cross-sectional postbereavement survey.
Setting: Regional health services research and development structure representing all health and social care providers involved in the last year of life in Cologne, a city with 1 million inhabitants in Germany.
Participants: 351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded.
Results: For the majority (89%) of patients, home was the main place of care during their last year of life. Nevertheless, 91% of patients had at least one hospital admission and 42% died in hospital. Only 60% of informants reported that the decedent had been told that the disease was leading to death. Hospital physicians broke the news most often (58%), with their communication style often (30%) being rated as ‘not sensitive’. Informants indicated highly positive experiences with care provided by hospices (89% ‘good’) and specialist palliative home care teams (87% ‘good’). This proportion dropped to 41% for acute care hospitals, this rating being determined by the feeling of not being treated with respect and dignity (OR=23.80, 95% CI 7.503 to 75.498) and the impression that hospitals did not work well together with other services (OR=8.37, 95% CI 2.141 to 32.71).
Conclusions: Following those data, our regional priority for action now is improvement of care in acute hospitals, with two new projects starting, first, how to recognise and communicate a limited life span, and second, how to improve care during the dying phase. Results and further improvement projects will be discussed in a working group with the city of Cologne, and repeating this survey in 2 years will be able to measure regional achievements.
Trial registration number DRKS00011925.
Long-term care (LTC) nurses are a critical nexus for patient communication and vital to advance care planning due to their professional role and breadth of patient relationships. The current study's aim was to explore the communication strategies Midwestern LTC nurses use to clarify patients' end-of-life (EOL) care preferences. Two focus groups used a phenomenological framework to elucidate the experiences of 14 RNs. Data analysis revealed two themes grounded in time: (a) nurses use time to assess patients' EOL situation and assist patients to discern care options; and (b) nurses educate patients about EOL care, adjust care plans, and develop trusting relationships. Two themes were grounded in clinical experience: (a) nurses become persistent advocates and educators to initiate and sustain EOL communication; and (b) nurses learn consistency in communication, including awareness of patients' nonverbal communication. Nurses shared that EOL communication is never "done"; time frames to assess, educate, and clarify are continuous.
BACKGROUND: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients' and caregivers' individual perspectives, and those they share.
AIM: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives.
DESIGN: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions.
SETTING/PARTICIPANTS: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age.
RESULTS: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions.
CONCLUSIONS: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.
AIMS: To describe advance care planning in nursing homes when residents with cognitive impairment and/or their next of kin participated and identify associated challenges.
DESIGN: A qualitative study of nine advance care planning conversations in four Norwegian nursing home wards. During the implementation of advance care planning, we purposively sampled residents with cognitive impairment, their next of kin and healthcare personnel. The implementation followed a "whole-ward" approach aimed at involving the whole ward in fostering an inclusive, holistic advance care planning discussion. Involving as many residents as possible, preferably together with their next of kin, were central.
METHODS: From observed and audio-recorded advance care planning conversations that took place from November 2015 to June 2016, we conducted a thematic analysis of the transcripts and field notes. Reporting adhered to the COREQ guidelines.
RESULTS: Residents actively relayed their preferences regarding healthcare and end-of-life issues, despite the cognitive impairment. Next of kin provided constructive support and conversations were largely resident-focused. However, involving residents was also challenging, findings included: residents' preferences were often vague, relevant medical information from healthcare personnel lacked and the next of kin were sometimes unaware of the resident's previously held preferences. Moreover, residents tended to focus more on the past and present than the future end-of-life care.
CONCLUSIONS: Residents with cognitive impairment can participate actively and meaningfully in advance care planning, if the healthcare personnel actively listens. However, several challenges can arise. Supported decision-making can improve communication and resident involvement, reinforcing a relational understanding of autonomy.
IMPACT: Persons with cognitive impairment should be invited to participate in advance care planning. Their participation may make its benefits and more person-centred care attainable to persons that are often not involved. Successful involvement of persons with cognitive impairment in advance care planning may rely on robust implementation.
The Advancing American Kidney Health (AAKH) Initiative aims to promote high-value patient-centered care by improving access to and quality of treatment options for kidney failure. The 3 explicit goals of the initiative are to reduce the incidence of kidney failure, increase the number of available kidneys for transplantation, and increase transplantation and home dialysis. To ensure a patient-centered movement toward home dialysis modalities, actionable principles of palliative care, including systematic communication and customized treatment plans, should be incorporated into this policy. In this perspective, we describe 2 opportunities to strengthen the patience-centeredness of the AAKH Initiative through palliative care: (1) serious illness conversations should be required for all dialysis initiations in the End-Stage Renal Disease Treatment Choices model, and (2) conservative kidney management should be counted as a home modality alongside peritoneal dialysis and home hemodialysis. A serious illness conversation can help clinicians discern whether a patient's goals and values are best respected by a home dialysis modality or whether a nondialytic strategy such as conservative kidney management should be considered. An intensive and careful patient- and family-centered selection process will be necessary to ensure that no patient is pressured to forego conventional dialysis.
The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.
Objective: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people).
Methods: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12–18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19–24 years). Findings were shared with participants, and feedback helped to interpret the findings.
Results: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this.
Conclusion: Young people’s priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.
Purpose: To investigate difficulties doctors experience during life-sustaining treatment (LST) discussion with seriously ill patients and their families after enactment of the LST Decisions Act in February 2018.
Materials and Methods: A cross-sectional survey was conducted in a tertiary hospital in the Republic of Korea in August 2019. 686 doctors who care for seriously ill patients were given a structured questionnaire, and difficulties during the discussion were examined.
Results: 132 doctors completed the questionnaire. 85% answered they treat cancer patients. Most (86.4%) experienced considerable difficulties during LST discussions (mean score, 7.4 ± 1.6/10). The two most common difficulties were communication with patients and family and determining when to discuss LST. Two-thirds of doctors found direct discussions with the patient difficult and said they would initiate LST discussions only with family. LST discussions were actually initiated later than considered appropriate. When medically assessing whether the patient is imminently dying, 56% of doctors experienced disagreements with other doctors, which could affect their decisions.
Conclusion: This study found that most doctors experienced serious difficulties regarding communication with patients and family and medical assessment of dying process during LST discussions. To alleviate these difficulties, further institutional support is needed to improve the LST discussion between doctors, patients, and family.
BACKGROUND: Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed.
METHODS: Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End-of-life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings.
RESULTS: Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre-post change in depression or fear of death. Anxiety improved significantly.
CONCLUSIONS: This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant-initiated encounters showed participants wanted to talk about end of life.
Purpose: Prolonged living with chronic illness and disability expands the discussion of end-of-life conversation because of the complex role of intercommunication among patient, family, and healthcare staff. Little is known about such interaction from participants’ different perspectives. This qualitative case study examined end-of-life conversation among patient, family, and staff during long-term hospitalization in a neurological rehabilitation department.
Methods: After the patient’s death, 18 participants responded to in-depth semi-structured interviews: 16 healthcare staff and two family members (the patient’s wife and brother). In addition, we used the wife’s autoethnographic documentation of her experiences during end-of-life conversation.
Results: Thematic analysis produced three themes: (1) The Rehabilitation Department’s Mission – Toward Life or Death? (2) The Staff’s Perception of the Patient; (3) Containing Death: End-of-life Conversation from Both Sides of the Bed. These themes represented participants’ different perspectives in the intercommunication in overt and covert dialogues, which changed over time. Death’s presence–absence was expressed by movement between clinging to life and anticipating death.
Conclusion: The study findings emphasize the importance of practitioners’ training to accept and openly discuss death as an inseparable part of life-long disability, and the implementation of this stance during end-of-life care via sensitive conversations with patients and their families.
IMPLICATIONS FOR REHABILITATION It is vital for rehabilitation professionals to be trained to process and accept end-of-life issues as a natural and inseparable part of the life discourse among people with disabilities and their families. Rehabilitation professionals need to acquire tools to grasp the spoken and unspoken issues related to life and death, and to communicate their impressions and understandings with people with disabilities and their families. Rehabilitation professionals need to encourage an open dialogue when communicating with people with disabilities and their families on processes related to parting and death.
INTRODUCTION: Talking about death and dying is evoking discomfort in many persons, resulting in avoidance of this topic. However, end-of-life discussions can alleviate distress and uncertainties in both old and young adults, but only a minority uses this option in palliative care. Even in healthy populations, talking about death is often seen as alleviative and worthwhile, but rarely initiated.
OBJECTIVE: To investigate different psychological interventions (a) encouraging the readiness for end-of-life discussions and (b) changing death attitudes in healthy adults of different ages.
METHODS: 168 participants were randomized to four different interventions (IG1: value-based intervention with end-of-life perspective, IG2: motivation-based intervention with end-of-life perspective, IG3: combination of IG1 and IG2, CG: control group). Primary outcome was the readiness to engage in end-of-life topics. Secondary outcomes were fear of death, fear of dying and death acceptance. Assessments took place before, directly after the intervention and at 2 weeks of follow up.
RESULTS: IG2 and IG3 reported significantly more changes in the readiness to engage in end-of-life discussions than the CG (F[5.61, 307] = 4.83, p < 0.001, ηp2 = 0.081) directly after the intervention. The effect of IG3 remained stable at the follow-up. There were no significant effects of the interventions on end-of-life fears or death acceptance. Acceptability of the interventions was very high.
CONCLUSIONS: Short interventions can be useful to encourage end-of-life discussions and could be integrated in health care programs. The efficacy and effectiveness of these short interventions in palliative patients are currently examined.
Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers among healthcare professionals and family members. Studies that have focused on paediatric oncology have showed that openness about the transition from curative to palliative care is frequently avoided. As long ago as the 1980s a paper in this journal reported that children often wanted to share their thoughts and feelings at the end of life, but that adults often failed to recognise that need.
BACKGROUND AND OBJECTIVES: Nursing homes (NHs) care for 70% of Americans dying with dementia. Many consider deaths in NHs rather than hospitals as preferable for most of these residents. NH characteristics such as staff teamwork, communication, and other components of patient safety culture (PSC), together with state minimum NH nurse staffing requirements, may influence location of death. We examined associations between these variables and place of death (NH/hospital) among residents with dementia.
RESEARCH DESIGN AND METHODS: Cross-sectional study of 11,957 long-stay NH residents with dementia, age 65+, who died in NHs or hospitals shortly following discharge from one of 800 US NHs in 2017. Multivariable logistic regression systematically estimated effects of PSC on odds of in-hospital death among residents with dementia, controlling for resident, NH, county, and state characteristics. Logistic regressions also determined moderating effects of state minimum NH nurse staffing requirements on relationships between key PSC domains and location of death.
RESULTS: Residents with dementia in NHs with higher PSC scores in communication openness had lower odds of in-hospital death. This effect was stronger in NHs located in states with higher minimum NH nurse staffing requirements.
DISCUSSION AND IMPLICATIONS: Promoting communication openness in NHs across nursing disciplines may help avoid unnecessary hospitalization at the end of life, and merits particular attention as NHs address nursing staff mix while adhering to state staffing requirements. Future research to better understand unintended consequences of staffing requirements is needed to improve end-of-life care in NHs.
PURPOSE: recent data show that there is limited evidence and guidance regarding the best practices for the integration of palliative care (PC) and end-of-life (EOL) post-stroke. The purpose of this meta-synthesis is to understand the PC/EOL experiences after a stroke.
METHODS: a meta-synthesis was conducted to answer the following research question-What are post-stroke PC/EOL experiences from the perspectives of patients, families and healthcare professionals (HCPs)? This approach was completed through two main phases-a systematic search and appraisal of the literature and reciprocal translation with interpretive triangulation of the extracted data. Databases searched were MEDLINE, EMBASE, PsycINFO, Joanna Briggs Institute and CINAHL databases (from their inception to April 2020). After data were extracted, a qualitative exploratory design was used to evaluate the PC/EOL in post-stroke experiences.
RESULTS: the search identified 696 studies. A total of 14 studies were included in this meta-synthesis as they satisfied our eligibility criteria. Uncertainty post-stroke was the overarching main theme that emerged across post-stroke PC/EOL experiences. Within this theme of uncertainty, opportunities to decrease uncertainty emerged from two interdependent themes-presence of cohesive communication and shared dynamic decision process for both families and HCPs.
CONCLUSIONS: to mitigate the degree of uncertainty post-stroke, HCPs should be present, provide clear direct communication and incorporate the value-based goals of care within their medical treatment plan. These findings suggest that future research is needed to focus on how PC approaches can be integrated into stroke care programmes.
End-of-life care of critically ill adult patients with advanced or incurable cancers is imbued with major ethical challenges. Oncologists, hospitalists, and intensivists can inadvertently subjugate themselves to the perceived powers of autonomous patients. Therapeutic illusion and poor insight by surrogates in physicians' ability to offer accurate prognosis, missed opportunities and miscommunication by clinicians, and lack of systematic or protocolized approach represent important barriers to high-quality palliative care. Enhanced collaboration, models that allow clinicians and surrogates to share the burdens of decision, and institutional support for early integration of palliative care can foster an ethical climate.
OBJECTIVE: To examine transitions out of prognostic talk in interactions between clinicians and the relatives and friends of imminently dying hospice patients.
METHODS: Conversation analysis of 20 conversations between specialist palliative care clinicians and the families of imminently dying patients in a hospice.
RESULTS: Following the provision and acknowledgement of a prognostic estimate, clinicians were able to transition gradually towards making assurances about actions that could be taken to ensure patient comfort. When families raised concerns or questions, this transition sequence was extended. Clinicians addressed these questions or concerns and then pivoted to action-oriented talk, most often relating to patient comfort.
CONCLUSION: In conversations at the end of life, families and clinicians used practices to transition from the uncertainty of prognosis to more certain, controllable topics including comfort care.
PRACTICE IMPLICATIONS: In a context in which there is a great deal of uncertainty, transitioning towards talk on comfort care can emphasise action and the continued care of the patient and their family.
Background: Emergency department (ED) visits are common for older patients with chronic, life-limiting illnesses and may offer a valuable opportunity for clinicians to initiate proactive goals of care conversations (GoCC) to ensure end-of-life care that aligns with the patients' values, goals, and preferences.
Objectives: The purpose of this study is to assess whether GoCC are occurring with patients in Department of Veteran Affairs (VA) EDs, to characterize these patients' goals of care and life-sustaining treatment (LST) decisions, and to examine the extent to which palliative or hospice consultations occur following the ED visit.
Design: We conducted a cross-sectional retrospective study using health record data.
Settings/Subjects: A total of 10,780 patients receiving care in VA, whose first GoCC occurred during an ED visit.
Results: Of the patients in the study, approximately half were at least 70 years of age, three-quarters were white, and half had multiple serious disease comorbidities. The percentage of patients who desired cardiopulmonary resuscitation was lower among the highest risk (i.e., of hospitalization and death) patients (64% vs. 51%). The percentage of patients wanting other LSTs (e.g., mechanical ventilation) was higher among the lowest risk patients; and the percentage of patients requesting limits to LSTs was highest among higher risk patients. Eighteen percent of patients had a palliative or hospice care consult within three months of their ED visit.
Conclusions: In this study, we verified that GoCC are being initiated in the ED with Veterans at differing stages in their illness trajectory and that higher proportions of higher risk patients preferred to limit LSTs.
BACKGROUND: The linguistic and cultural diversity found in European societies creates specific challenges to palliative care clinicians. Patients' heterogeneous habits, beliefs and social situations, and in many cases language barriers, add complexity to clinicians' work. Cross-cultural teaching helps palliative care specialists deal with issues that arise from such diversity. This study aimed to provide interested educators and decision makers with ideas for how to implement cross-cultural training in palliative care.
METHODS: We conducted four focus groups in French- and Italian-speaking Switzerland. All groups consisted of a mix of experts in palliative care and/or cross-cultural teaching. The interdisciplinary research team submitted the data for thematic content analysis.
RESULTS: Focus-group participants saw a clear need for courses addressing cross-cultural issues in end-of-life care, including in medical disciplines outside of palliative care (e.g. geriatrics, oncology, intensive care). We found that these courses should be embedded in existing training offerings and should appear at all stages of curricula for end-of-life specialists. Two trends emerged related to course content. One focuses on clinicians' acquisition of cultural expertise and tools allowing them to deal with complex situations on their own; the other stresses the importance of clinicians' reflections and learning to collaborate with other professionals in complex situations. These trends evoke recent debates in the literature: the quest for expertise and tools is related to traditional twentieth century work on cross-cultural competence, whereas reflection and collaboration are central to more recent research that promotes cultural sensitivity and humility in clinicians.
CONCLUSION: This study offers new insights into cross-cultural courses in palliative and end-of-life care. Basic knowledge on culture in medicine, variable practices related to death and dying, communication techniques, self-reflection on cultural references and aptitude for interprofessional collaboration are central to preparing clinicians in end-of-life settings to work with linguistically and culturally diverse patients.
OBJECTIVE: To explore family members' experiences of advance care planning in nursing homes.
DESIGN: Individual interviews. Thematic analysis.
SETTING: Four nursing homes in Sweden.
SUBJECTS: Eighteen family members of deceased nursing home patients.
MAIN OUTCOME MEASURES: Family members' experiences of advance care planning in nursing homes.
RESULTS: Family members' experiences of advance care planning in a nursing home context involved five themes: Elephant in the room, comprising end-of-life issues being difficult to talk about; Also silent understanding, e.g. patient's preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patient's wishes although preferences had not been communicated openly; Significance of small details, e.g. family members perceive everyday details as symbols of staff commitment; Invisible physician, supporting nurse, e.g. nurse being a gatekeeper, providing a first line assessment in the physician's absence; and Feeling of guilt, e.g. family members wish to participate in decisions regarding direction of care and treatment limits, and need guidance in the decisions.
CONCLUSION: Our study stresses the significance of staff involving the patient and family members in the advance care planning process in nursing homes, thereby adapting the care in line with patient's wishes, and for the patient to share these preferences with family members. Education in communication related to the subject may be important to shape advance care planning. Key points Knowledge on advance care planning (ACP) in a nursing home (NH) context from the perspective of family members is limited. Role of the nurse in ACP is seen as central, whereas physician involvement is often perceived to be lacking. Significance of small details, perceive to symbolize staff competence and respect for patient autonomy. To limit family members' feeling of guilt, communicating end-of-life issues is important in order to align ACP with patient preferences.