Dementia is the leading cause of death in England and Wales, but traditionally it has not been considered a terminal or life-limiting condition. As a result, little significance may be placed on advance care planning (ACP) for people with dementia. Evidence suggests that most patients with advanced dementia have often not been given an opportunity to complete an advance care plan and have not had conversations with their families about their wishes and preferences at the end of life. This article reports on a literature review that aimed to explore the evidence on the introduction of ACP in achieving preferred place of care or death for people living with dementia, and reducing carer burden. The literature review found that ACP discussions have several benefits for people with dementia and their family carers, but that various factors can support or hinder such discussions. It concludes that these people and their families need to plan for end of life and suggests that ACP can increase the likelihood of achieving their preferred place of care and death and reducing decisional burden for carers.
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy.
BACKGROUND: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments.
METHODS: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation.
RESULTS: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.
CONCLUSIONS: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping.
We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
BACKGROUND: Advance care planning is not well implemented in Belgian hospital practice. In order to obtain successful implementation, implementation theory states that the adopters should be involved in the implementation process. This information can serve as a basis for creating better implementation strategies.
AIM: For this study, we asked hospitalized palliative patients and their families what they experienced as good advance care planning.
METHODS: Twenty-nine interviews were taken from patients and families, following the Tape Assisted Recall procedure of Elliot. These interviews were analyzed using content analysis based on grounded theory. To improve reliability, 3 independent external auditors audited the analysis.
RESULTS: Results show that hospitalized palliative patients and families want to have advance care planning communication about treatment and care throughout their disease and about different aspects: social, psychological, physical, practical, and medical. They prefer to have these conversations with their supervising physician. They report 4 important goals of advance care planning communication: establishing a trustful relationship with the physician, in which they feel the involvement of the physician; giving and receiving relevant information for the decision process, making a personal decision about which treatment and care are preferred; and finding consensus between the preferred decision of the physician, the patient and the family concerning the treatment and care policy.
CONCLUSION: This study can contribute to advance care planning implementation in hospital practice because it gives in insight into which elements in advance care planning patients and families experience as necessary and when advance care planning is necessary to them.
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Palliative care nurses must practice the highest standards by delivering nonbiased, nonjudgmental support to patients and families; however, nurses may experience moral distress if their personal values conflict with a family's decisions and needs. This case focuses on a family receiving community-based palliative care for a child with a genetic life-limiting disease. They had a family history of this disease, which had caused the deaths of previous children, and the mother had a current unplanned pregnancy. The care team overcame language barriers and cultural obstacles to establish a trusting relationship with the vulnerable pregnant mother. They were able to support her decision to terminate her pregnancy safely by helping her to navigate a complex health care system. Using 5 crucial pillars to assist health care members with the delivery of nonjudgmental family-centered palliative care is recommended: (1) identification of biases, (2) utilization of a culturally safe approach, (3) effective communication, (4) assessment and support, and (5) knowledge of community resources.
Background: Hospital-based nurses can offer a unique perspective about factors that can contribute to a good end-of-life experience, including the location in which end-of-life care is delivered.
Objectives: To examine in a sample of hospital-based nurses, the location in which they personally would most and least prefer to be cared for at the end of life, and the reasons for these preferences.
Design: Questionnaire-based, cross-sectional study.
Setting and participants: 170 registered and enrolled nurses employed in acute care wards of three metropolitan hospitals in Australia between April 2016 and February 2017.
Results: Nurses would most prefer to be cared for at home (53%) or in a hospice/palliative care unit (41%) at the end-of-life. Being in a familiar environment and feeling like dying is a more normal process were the main reasons reported for choosing these settings. The main reasons given by nurses for choosing a hospice/palliative care unit were that being cared for at home may place a burden on family/friends and hinder appropriate symptom management. Nurses would least prefer being cared for in an emergency department (49%) due to a perceived lack of privacy and adverse impact on the family; and residential aged care facilities (25%) due to perceived suboptimal symptom management and reduced likelihood of wishes being respected.
Conclusion: Nurses in this study value familiarity of environment and normalising the dying process. The majority do not wish to burden their family and friends at the end of their lives. Important next steps in providing services that meet the needs of people facing the end of their lives include understanding how nurses' personal views may influence decision-making conversations with patients and families about location of care at the end-of-life, as well as determining the capacity of available services to meet patient and family needs.
Hospice interdisciplinary teams (IDTs) are required to meet regularly to update care plans for terminally ill patients and their family caregivers. Although providers see value in these meetings, they also experience frustration over meeting inefficiencies and communication challenges. The current article presents ENVISION, a tool designed to improve communication in hospice IDT meetings by providing attendees with access to up-to-date patient and family data to inform clinical decision making. In the current qualitative descriptive study, researchers explored the perspectives of hospice providers (n = 21) and family caregivers (n = 10) regarding ENVISION's usefulness and ease of use. Numerous factors influenced participants' perceptions of the tool as useful, including its impact on task efficiency, effectiveness, and difficulty. Perceptions of ENVISION's ease of use focused on ease of learning, operating, and interpreting data the tool provided. Findings suggest ENVISION would benefit hospice nurses in care management and senior leadership positions. [Journal of Gerontological Nursing, 46(7), 9-14.].
BACKGROUND: Early palliative care consultation ("PCC") to discuss goals-of-care benefits seriously ill patients. Risk factor profiles associated with the timing of conversations in hospitals, where late conversations most likely occur, are needed.
OBJECTIVE: To identify risk factor patient profiles associated with PCC timing before death.
METHODS: Secondary analysis of an observational study was conducted at an urban, academic medical center. Patients aged 18 years and older admitted to the medical center, who had PCC, and died July 1, 2014 to October 31, 2016, were included. Patients admitted for childbirth or rehabilitationand patients whose date of death was unknown were excluded. Classification and Regression Tree modeling was employed using demographic and clinical variables.
RESULTS: Of 1141 patients, 54% had PCC "close to death" (0-14 days before death); 26% had PCC 15 to 60 days before death; 21% had PCC >60 days before death (median 13 days before death). Variables associated with receiving PCC close to death included being Hispanic or "Other" race/ethnicity intensive care patients with extreme illness severity (85%), with age <46 or >75 increasing this probability (98%). Intensive care patients with extreme illness severity were also likely to receive PCC close to death (64%) as were 50% of intensive care patients with less than extreme illness severity.
CONCLUSIONS: A majority of patients received PCC close to death. A complex set of variable interactions were associated with PCC timing. A systematic process for engaging patients with PCC earlier in the care continuum, and in intensive care regardless of illness severity, is needed.
Background: Implantable cardioverter-defibrillators (ICDs) reduce the incidence of sudden cardiac death for high-risk patients with heart failure (HF), but shocks from these devices can also cause pain and anxiety at the end of life. Although professional society recommendations encourage proactive discussions about ICD deactivation, clinicians lack training in conducting these conversations, and they occur infrequently.
Methods: As part of a six-center randomized controlled trial, we evaluated the educational component of a multicomponent intervention shown to increase conversations about ICD deactivation by clinicians who care for a subset of patients with advanced HF. This consisted of a 90-minute training workshop designed to improve the quality and frequency of conversations about ICD management. To characterize its utility as an isolated intervention, we compared HF clinicians' pre- and postworkshop scores (on a 5-point Likert scale) assessing self-reported confidence and skills in specific practices of advance care planning, ICD deactivation discussions, and empathic communication.
Results: Forty intervention-group HF clinicians completed both pre- and postworkshop surveys. Preworkshop scores showed high baseline levels of confidence (4.36, standard deviation [SD = 0.70) and skill (4.08, SD = 0.72), whereas comparisons of pre- and postworkshop scores showed nonsignificant decreases in confidence (-1.16, p = 0.252) and skill (-0.20, p = 0.843) after the training session.
Conclusions: Our findings showed no significant changes in self-assessment ratings immediately after the educational intervention. However, our data did demonstrate that HF clinicians had high baseline self-perceptions of their skills in advance care planning conversations and appear to be well-primed for further professional development to improve communication in the setting of advanced HF.
Purpose: To explore the experiences of expatriate nurses caring for Muslim patients near end-of-life in a palliative care unit in the United Arab Emirates.
Methods: A qualitative descriptive study, with data collected through semi structured individual interviews with nine expatriate nurses working in a palliative care unit in one hospital in the United Arab Emirates. Thematic analysis of the data transcripts used a structured inductive approach.
Results: Analysis of the interview transcripts yielded three themes. First, language was a significant barrier in end-of-life care but was transcended when nurses practiced authentically, using presence, empathetic touch and spiritual care. Secondly, relationships between nurses, patients and families were strengthened over time, which was not always possible due to late presentation in the palliative care unit. Finally, nurses were continually in discussions with physicians, families and other nurses, co-creating the meaning of new information and experiences within the hospital policy context.
Conclusion: For expatriate nurses, palliative nursing in a Muslim middle eastern country is complex, requiring nurses to be creative in their communication to co-create meaning in an emotionally intensive environment. Like other palliative care settings, time can strengthen relationships with patients and their families, but local cultural norms often meant that patients came to palliative care late in their disease trajectory. Preparing expatriate nurses for work in specialist palliative care settings requires skill development in advanced communication and spiritual practices, as well as principles of palliative care and tenets of Muslim culture.
Person-centered, family-oriented services are integral to palliative and end-of-life care. Effective communication with providers informs the quality of the dying experience for patients and how families fare in bereavement. This paper reports findings from a study exploring how communication and care in the later stages of an advanced illness influence family caregivers’ well-being in bereavement. A concurrent triangulation design was used to analyze data collected during semi-structured interviews with 108 recently bereaved caregivers from a single hospice agency in Western New York. Findings from this study suggest that family caregivers assume the role of interpreter and advocate while engaged in both formal and informal communication with health care providers at the end of care-recipients’ lives. Findings also suggest that families are more likely to feel emotionally prepared for loss and grief when health care providers are available to communicate in a concise, consistent, and compassionate manner. The results illuminate the important connection between communication during the transition from late-stage illness to end-of-life care and preparation for bereavement. The paper concludes with a discussion of how findings from this study align with recent concerted efforts to establish standards and competencies for social work education and practice in palliative care.
Anyone’s life can turn upside down. Illness, disease, and accidents can jeopardize the life of anyone at any time. For families and their loved ones who fall victim to a serious medical crisis or disease, a little preparation can make a big difference. A 2018 survey revealed that 92% of adults know it is important to share their medical preferences with family and medical providers in preparation for end of life. Only 32% report they have shared their wishes.
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Objective: Communication between patients and end-of-life care providers requires sensitivity given the context and complexity involved. This systematic review uses a narrative approach to synthesise clinicians’ understandings of communication in end-of-life care.
Methods: A systematic, narrative synthesis approach was adopted given the heterogeneity across the 83 included studies. The review was registered prospectively on PROSPERO (ID: CRD42019125155]. Medline was searched for all articles catalogued with the MeSH terms “palliative care,” “terminal care” or “end-of-life care,” and “communication”. Articles were assessed for quality using a modified JQI-QARI tool.
Results: The findings highlight the centrality and complexity of communication in end-of-life care. The challenges identified by clinicians in relation to such communication include the development of skills necessary, complexity of interpersonal interactions, and ways in which organisational factors impact upon communication. Clinicians are also aware of the need to develop strategies for interdisciplinary teams to improve communication.
Conclusion: Training needs for effective communication in end-of-life contexts are not currently being met.
Practice Implications: Clinicians need more training to address the lack of skills to overcome interactional difficulties. Attention is also needed to address issues in the organisational contexts in which such communication occurs.
The large scale and rapid spread of the current COVID-19 pandemic has changed the way hospitals and other health services operate. Opportunities for patient-centered decision-making at the end of life are being jeopardized by a scarcity of health system resources. In response, the traditional doctor-initiated advanced care planning (ACP) for critical illness may also need to be readjusted. We propose nurse-led and allied health-led ACP discussions to ensure patient and family inclusion and understanding of the disease prognosis, prevention of overtreatment, and potential outcomes in crisis times. We highlight known barriers and list enablers, long-term and short-term opportunities to assist in the culture change.
Family meetings are fundamental to the practice of palliative medicine and serve as a cornerstone of intervention on the inpatient palliative care consultation service. The COVID-19 pandemic disrupted the structure and process of in-patient family meetings, due to necessary but restrictive visitor policies that did not allow families to be present in the hospital. We describe implementation of telemedicine to facilitate electronic family (e-family) meetings to facilitate in-patient palliative care. Of 67 scheduled meetings and performed by the palliative care service, only 2 meetings were aborted for a 97% success rate of scheduled meetings occurring. On a five-point Likert-type scale, the average clinician rating of the e-family meeting overall quality was 3.18 (SD, 0.96). Of the 10 unique family participants that agreed to be interviewed, their overall ratings of the e-family meetings were high. Over 80% of respondent families participants reported that they agreed or strongly agreed that they were able to ask all of their questions, felt comfortable expressing their thoughts and feelings with the clinical team, felt like they understood the care their loved one received, and that the virtual family meeting helped them trust the clinical team. Of patients who were able to communicate 50% of family respondents reported that the e-family meeting helped them understand their loved one’s thoughts and wishes.
Introduction: De nombreuses études sur la communication insuffisante et la qualité de vie altérée des patients atteint de bronchopneumopathie chronique obstructive (BPCO) amènent à conclure que leur prise en charge palliative reste à améliorer. L’objectif de cette étude était de réaliser un état des lieux des perceptions et des pratiques de soins palliatifs en pneumologie pour les patients atteints de BPCO.
Méthodes: Un questionnaire « Google Form » a été transmis aux pneumologues via l’annuaire de la Société de pneumologie de langue française de 2017.
Résultats: Au total, 294 réponses ont été reçues, 287 ont été analysées ; 81,6 % des pneumologues identifiaient une phase palliative chez le patient BPCO. Lorsqu’elle n’était pas identifiée, la première raison évoquée (68,8 %) était la difficulté à définir le moment à partir duquel débute une prise en charge palliative. Les aspects de la démarche palliative les plus fréquemment problématiques pour les participants étaient : la discussion des conditions de décès et l’impression que le patient BPCO soit peu demandeur d’information. Près d’un tiers des pneumologues recueillaient les souhaits concernant la réanimation et l’intubation orotrachéale pour 61 % à 100 % des patients qu’ils estimaient les plus graves.
Conclusion: L’incertitude du moment auquel débuter des soins palliatifs et la communication sont les principaux obstacles à la démarche palliative chez le patient BPCO. Le développement d’outils standardisés aiderait à lever ces principaux freins.
Purpose: As many as 20% of oncology patients receive chemotherapy in the last 14 days of their lives. This study characterized conversations between patients and cancer clinicians on chemotherapy cessation in the setting of advanced cancer.
Methods: This 3-site study captured real-time, audio-recorded interviews between oncology clinicians and patients with cancer during actual clinic visits. Audio-recordings were reviewed for discussion of chemotherapy cessation and were analyzed qualitatively.
Results: Among 525 recordings, 14 focused on stopping chemotherapy; 14 patients participated with 11 different clinicians. Two types of nonmutually exclusive conversation elements emerged: direct and specific elements that described an absence of effective therapeutic options and indirect elements. An example of a direct element is as follows: “…You know this is…always really tough…But I—I think that you may need more help…I think we’re close to stopping chemotherapy…And hospice is really helpful to have in place…” In contrast, the second conversation element was more convoluted: “…transplant is not an option and surgery is not an option…The options…are taking a pill…It doesn’t shrink the tumor…It may help you live a little longer. But I’m worried if [you] had the pill, it’s still a therapy and it still has side effects. I [am] worried if I give it to you now, that you’re so weak, it will make you worse.” No relationship seemed apparent between conversation elements and chemotherapy cessation.
Conclusions: Conversations on chemotherapy cessation are complex; multiple factors appear to drive the decision to stop.
Objectives: Advance care planning (ACP) typically comprises formal preparations (i.e., living will and/or durable power of attorney for health care) and informal discussions with family members and health care providers. However, some people complete formal documents without discussing them with others. If they become incapacitated, their appointed decision makers may lack guidance on how to interpret or enact their formal wishes. We document the prevalence and correlates of this partial approach to ACP.
Method: Using multinomial logistic regression models and data from a U.S. sample of 4,836 older adults in the 2018 wave of the National Health and Aging Trends Study (NHATS), this brief report evaluated associations between social integration indicators and the odds of completing (a) both discussions and formal plans (two-pronged ACP), (b) discussions only, (c) no ACP, and (d) formal ACP only (reference category). We adjust for demographic and health characteristics established as correlates of ACP.
Results: A minority (15%) of NHATS participants reported formal plans without having discussed them. Indicators of social isolation (e.g., smaller social networks and fewer social activities) increased the odds of engaging in formal planning only compared to two-pronged ACP. Socioeconomic disadvantage and probable dementia reduced the odds of having end-of-life conversations, whether as one’s only preparation or in tandem with formal preparations.
Discussion: Socially isolated persons are especially likely to do formal planning only, which is considered less effective than two-pronged ACP. Health care professionals should recognize that older adults with few kin may require additional support and guidance when doing ACP.