Advance care planning for patients with COVID-19: a communication guide.

In view of the high morbidity and mortality associated with COVID-19, early and honest conversations with patients about goals of care are vital. Advance care planning in its traditional manner may be difficult to achieve given the unpredictability of the disease trajectory. Despite this, it is crucial that patients' care wishes are explored as this will help prevent inappropriate admissions to hospital and to critical care, improve symptom control and advocate for patient choice. This article provides practical tips on how to translate decisions around treatment escalation plans into conversations, both face-to-face and over the phone, in a sensitive and compassionate manner. Care planning conversations for patients with COVID-19 should be individualised and actively involve the patient. Focusing on goals of care rather than ceilings of treatment can help to alleviate anxiety around these conversations and will remind patients that their care will never cease. Using a framework such as the 'SPIKES' mnemonic can help to structure this conversation. Verbally conveying empathy will be key, particularly when wearing personal protective equipment or speaking to relatives over the phone. It is also important to make time to recognise your own emotions during and/or after these conversations.

Concordance of End-of-Life Care With End-of-Life Wishes in an Integrated Health Care System.

Importance: There is widespread consensus on the challenges to meeting the end-of-life wishes of decedents in the US. However, there is broad but not always recognized success in meeting wishes among decedents 65 years and older. Objective: To assess how well end-of-life wishes of decedents 65 years and older are met in the last year of life. Design, Setting, and Participants: This quality improvement study involved 3 planned samples of family members or informants identified as the primary contact in the medical record of Kaiser Permanente Southern California decedents. The first sample was 715 decedents, 65 years or older, who died between April 1 and May 31, 2017. The second was a high-cost sample of 332 decedents, 65 years or older, who died between June 1, 2016, and May 31, 2017, and whose costs in the last year of life were in the top 10% of the costs of all decedents. The third was a lower-cost sample with 655 decedents whose costs were not in the top 10%. The survey was fielded between December 19, 2017, and February 8, 2018. Main Outcomes and Measures: Meeting end-of-life wishes, discussions with next of kin and physicians, types of discordant care, and perceptions of amount of care received. Results: Surveys were completed by 715 of the 2281 next of kin in the all-decedent sample (mean [SD] decedent age, 80.9 [8.9] years; 361 [50.5%] male) for a 31% response rate; in 332 of the 1339 next of kin in the high-cost sample (mean [SD] decedent age, 75.5 [7.1] years; 194 [48.4%] male) for a 25% response rate; and in 659 of 2058 in the lower-cost sample (mean [SD] decedent age, 81.6 [8.8] years) for a 32% response rate. Respondents noted that high percentages of decedents received treatment that was concordant with their desires: 601 (88.9%) had their wishes met, 39 (5.9%) received a treatment they did not want, and 554 (84.1%) filled out an advance directive. A total of 509 respondents (82.5%) believed the amount of care was the right amount. Those with the highest costs had their wishes met at lower rates than those with lower costs (250 [80.1%] vs 553 [89.6%]). Conclusions and Relevance: In this Kaiser Permanente Southern California cohort, a large proportion of decedents 65 years and older had end-of-life discussions and documentation, had their wishes met, and received the amount of care they thought appropriate.

Integration of Advance Care Planning Into Clinical Practice: A Quality Improvement Project for Leaders.

OBJECTIVE: This quality improvement initiative sought to develop a proactive integrated system approach to advance care planning (ACP) through leadership and colleague engagement. BACKGROUND: Nurse leaders have the capacity to influence the professional competencies of care teams in ACP. Nurse leaders were educated on the importance of ACP, national quality metrics, resources for staff education, and ways to integrate ACP into workflows based on a population management model. METHODS: The project design is a prospective, mixed method design. RESULTS: Nurse leader participants demonstrated a significant increase in knowledge of the importance of ACP and evidence-based models to increase staff engagement and competency. CONCLUSIONS: Study supports nurse leader interventions, promoted engagement of proactive ACP to honor patient choice, and aligns with the mission and vision of one of the largest national Catholic healthcare organizations of being a trusted partner for life.

Planning Ahead for End-of-Life Healthcare among Iranian-American Older Adults: Attitudes and Communication of Healthcare Wishes.

The purpose of this study was to examine relationships between attitudes toward planning for end-of-life (EOL) care and social supports, spirituality, distrust of the US healthcare system, and acculturation; and to investigate a relationship between attitudes and communication of EOL wishes in Iranian-American older adults. A descriptive, cross-sectional study was used. Older adults (N = 135) were surveyed using Qualtrics online software. The participants were new immigrants to the U.S., highly educated, and insured with a generally positive self-reported health status. Of this sample, 47.4% reported that they communicated their EOL wishes orally or through written documentation. Favorable attitudes toward planning were associated with acculturation and healthcare system distrust, and, inversely, were negatively associated with spirituality. No significant association was found between attitudes and social support. Favorable attitudes predicted participants' communication of wishes. The findings can inform the provision of effective interventions to enhance culturally competent EOL care.

Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model.

BACKGROUND: Facilitating advance care planning with community-dwelling frail elders can be challenging. Notably, frail elders' vulnerability to sudden deterioration leads to uncertainty in recognising the timing and focus of advance care planning conversations. AIM: To understand how advance care planning can be better implemented for community-dwelling frail elders and to develop a conceptual model to underpin intervention development. DESIGN: A structured integrative review of relevant literature. DATA SOURCES: CINAHL, Embase, Ovid Medline, PsycINFO, Cochrane Library, and University of York Centre for Reviews and Dissemination. Further strategies included searching for policy and clinical documents, grey literature, and hand-searching reference lists. Literature was searched from 1990 until October 2018. RESULTS: From 3043 potential papers, 42 were included. Twenty-nine were empirical, six expert commentaries, four service improvements, two guidelines and one theoretical. Analysis revealed nine themes: education and training, personal ability, models, recognising triggers, resources, conversations on death and dying, living day to day, personal beliefs and experience, and relationality. CONCLUSION: Implementing advance care planning for frail elders requires a system-wide approach, including providing relevant resources and clarifying responsibilities. Early engagement is key for frail elders, as is a shift from the current advance care planning model focussed on future ceilings of care to one that promotes living well now alongside planning for the future. The proposed conceptual model can be used as a starting point for professionals, organisations and policymakers looking to improve advance care planning for frail elders.

Integrating early palliative care into routine practice for patients with cancer: A mixed methods evaluation of the INTEGRATE Project.

OBJECTIVE: With increasing evidence from controlled trials on benefits of early palliative care, there is a need for studies examining implementation in real-world settings. The INTEGRATE Project was a 3-year real-world project that promoted early identification and support of patients with cancer who may benefit from palliative care. This study assesses feasibility, stakeholder experiences, and early impact of the INTEGRATE Project METHODS: The INTEGRATE Project was implemented in four cancer centers in Ontario, Canada, and consisted of interdisciplinary provider education and an integrated care model. Providers used the Surprise Question to identify patients for inclusion. A mixed methods evaluation of INTEGRATE was conducted using descriptive data, interviews with providers and managers, and provider surveys. RESULTS: A total of 760 patients with cancer (lung, glioblastoma, head and neck, gastrointestinal) were included. Results suggest improvement in provider confidence to deliver palliative care and to initiate the Advanced Care Planning (ACP) conversation. The majority of patients (85%) had an ACP or goals of care (GOC) conversation initiated within a mean time to conversation of 5-46 days (SD 20-93) across centers. A primary care report was transmitted to family doctors 48-100% of the time within a mean time to transmission of 7-54 days (SD 9-27) across centers. Enablers and barriers influencing success of the model were also identified. CONCLUSIONS: A standardized model for the early introduction of palliative care for patients with cancer can be integrated into the routine practice of oncology providers, with appropriate education, integration into existing clinical workflows, and administrative support.

An integrative review of stakeholder views on Advance Care Directives (ACD): Barriers and facilitators to initiation, documentation, storage, and implementation.

OBJECTIVE: To examine the views and experiences of patients and their health care providers on developing advance care planning (ACP) and advance care directives (ACD); and determine barriers and facilitators to ACD development, storage, and use, including implications for people with communication disability. METHOD: An integrative review of 93 studies, analysed according to their content themes. RESULTS: Content themes encapsulated the initiation, documentation, and implementation stages of ACP/ACD. Lack of guidance for initiating and supporting ACP/ACD impedes discussions, and both patients and healthcare providers avoid discussions owing to fear of dying and reluctance to think about end-of-life. CONCLUSIONS: There are several barriers and facilitators to the initiation of ACP discussions, documentation and implementation of ACD, and little research exploring the views of legal professionals on the development, storage, or use of ACP documents. Further research is needed to explore the timing and responsibility of both legal and health professionals in initiating and supporting ACP discussions. PRACTICE IMPLICATIONS: It is important for healthcare providers to raise ACP discussions regularly so that patients have time to make informed advance care decisions. Storage of the document in an electronic health record might facilitate better access to and implementation of patients' end-of-life care decisions.

Advance Care Planning in Community: An Evaluation of a Pilot 2-Session, Nurse-Led Workshop.

BACKGROUND:: Engaging patients in advance care planning (ACP) is challenging but crucial to improving the quality of end-of-life care. Group visits and multiple patient-clinician interactions may promote advance directive (AD) completion. OBJECTIVE:: Facilitate ACP discussions with patients and caregivers and the creation of notarized AD's at a comprehensive cancer center. DESIGN:: Two-session, nurse-led ACP workshops for patients and their family caregivers. SETTING/PARTICIPANTS:: The workshop was offered to patients with cancer at a comprehensive cancer center and their family caregivers. MEASUREMENTS:: Validated 4-question ACP engagement survey, creation of a notarized AD by end of the workshop, and semistructured interviews. RESULTS:: Thirty-five patients participated in 10 workshops held March 2017 to February 2018. Median age was 52. Of 35, 24 (68.5%) patients completed pre- and postworkshop evaluation surveys. Mean preworkshop ACP readiness was 3.64 of 5; postworkshop readiness increased to 4.26 of 5 ( P = .001). Of 26, 17 (65.4%) of the patients who attended both workshop sessions had a new notarized AD scanned into the electronic medical record at the completion of the workshop series. Three family caregivers completed and had their own ADs notarized. Patient and family member response was overwhelmingly positive, with participants citing opportunities for group discussion and inclusion of family caregivers as important. CONCLUSIONS:: The ACP workshop was well received by participants and increased ACP readiness, discussion, and completion. Attendance at the workshop was low and barriers to attending workshops must be explored.

Does advance care planning in addition to usual care reduce hospitalisation for patients with advanced heart failure: A systematic review and narrative synthesis.

BACKGROUND: People with advanced heart failure have repeated hospital admissions. Advance care planning can support patient preferences, but studies in people with heart failure have not been assessed. AIM: To evaluate the literature regarding advance care planning in heart failure. DESIGN: Systematic review and narrative analysis (PROSPERO CRD42017059190). DATA SOURCES: Electronic databases were searched (1990 to 23 March 2017): MEDLINE(R), Cochrane Library, CINAHL and Scopus. Four journals were hand searched. Two independent researchers screened against eligibility criteria. One reviewer extracted all data and a sample by a second. Quality was assessed by Cochrane Risk of Bias or the Critical Appraisal Skills Programme Tool for Cohort Studies. RESULTS: Out of the 1713 articles, 8 were included representing 14,357 participants from in/outpatient settings from five countries. Two randomised controlled trials and one observational study assessed planning as part of a specialist palliative care intervention; one randomised controlled trial assessed planning in addition to usual cardiology care; one randomised controlled trial and one observational study assessed planning in an integrated cardiology-palliative care model; one observational study assessed evidence of planning (advance directive) as part of usual care and one observational study was a secondary analysis of trial participants coded Do Not Attempt Cardiopulmonary Resuscitation. Advance care planning: (1) reduced hospitalisation (5/7 studies); (2) increased referral/use of palliative services (4/4 studies); and (3) supported deaths in the patient-preferred place (2/2 studies). CONCLUSION: Advance care planning as part of specialist palliative care reduces hospitalisation. Preliminary studies of planning integrated into generic care, accessing specialist palliative care support if needed, are promising.

Palliative and end-of-life care for heart failure patients in an aging society.

The populations of Asian countries are expected to age rapidly in the near future, with a dramatic increase in the number of heart failure (HF) patients also anticipated. The need for palliative and end-of-life care for elderly patients with advanced HF is currently recognized in aging societies. However, palliative care and active treatment for HF are not mutually exclusive, and palliative care should be provided to reduce suffering occurring at any stage of symptomatic HF after the point of diagnosis. HF patients are at high risk of sudden cardiac death from the early stages of the disease onwards. The decision of whether to perform cardiopulmonary resuscitation in the event of an emergency is challenging, especially in elderly HF patients, because of the difficulty in accurately predicting the prognosis of the condition. Furthermore, advanced HF patients are often fitted with a device, and device deactivation at the end of life is a complicated process. Treatment strategies should thus be discussed by multi-disciplinary teams, including palliative experts, and should consider patient directives to address the problems discussed above. Open communication with the HF patient regarding the expected prognosis, course, and treatment options will serve to support the patient and aid in future planning.

Providing support to surrogate decision-makers for people living with dementia: Healthcare professional, organisational and community responsibilities.

The prevalence of dementia will continue to increase with the ageing of the population. Many people living with dementia will reach a stage where surrogate decision-makers-mostly family carers-will need to make a range of decisions on their behalf. The aim of this study was to learn from surrogate decision-makers how they can be most effectively supported in this role. The study employed a qualitative design using semi-structured face-to-face or telephone interviews with a purposive sample of 34 surrogate decision-makers of people living with dementia. Transcripts of participant interviews were reviewed using a thematic approach to analysis. Four main themes were identified from this analysis: needing greater community awareness of dementia and its impact; intervening early in cognitive decline; relying on health professionals for ongoing support; and seeking and using support from wherever is relevant for each person. Based on this analysis and a review of the literature, we propose a wholistic set of recommendations for the support of surrogate decision-makers. Healthcare professionals need to help family carers understand the likely trajectory of dementia, including the significance of surrogate decision-making. They can support the person living with dementia and their surrogates to undertake advance care planning and they can act as empathic guides during this process. Health and community care organisations need to provide a "key worker" model wherever possible so that the person living with dementia and their surrogate decision-maker do not have to seek support from multiple staff members or organisations. Carer support programmes can routinely include information and resources about surrogate decision-making. Community and government organisations can help people prepare for the possibility of becoming surrogate decision-makers by promoting a greater public awareness and understanding of both dementia and advance care planning.

Care Toward the End of Life in Older Populations and Its Implementation Facilitators and Barriers: A Scoping Review.

PURPOSE: To inform health system improvements for care of elderly populations approaching the end of life (EOL) by identifying important elements of care and implementation barriers and facilitators. DESIGN: A scoping review was carried out to identify key themes in EOL care. Articles were identified from MEDLINE, the Cochrane Library, organizational websites, and internet searches. Eligible publications included reviews, reports, and policy documents published between 2005 and 2016. Initially, eligible documents included reviews or reports concerning effective or important models or components of EOL care in older populations, and evidence was thematically synthesized. Later, other documents were identified to contextualize implementation issues. RESULTS: Thematic synthesis using 35 reports identified key features in EOL care: (1) enabling policies and environments; (2) care pathways and models; (3) assessment and prognostication; (4) advance care planning and advance directives; (5) palliative and hospice care; (6) integrated and multidisciplinary care; (7) effective communication; (8) staff training and experience; (9) emotional and spiritual support; (10) personalized care; and (11) resources. Barriers in implementing EOL care include fragmented services, poor communication, difficult prognostication, difficulty in accepting prognosis, and the curative focus in medical care. CONCLUSIONS: Quality EOL care for older populations requires many core components but the local context and implementation issues may ultimately determine if these elements can be incorporated into the system to improve care. Changes at the macro-level (system/national), meso-level (organizational), and micro-level (individual) will be required to successfully implement service changes to provide holistic and person-centered EOL care for elderly populations.

Palliative care in chronic obstructive pulmonary disease.

Chronic obstructive pulmonary disease (COPD) is the only major worldwide cause of mortality that is currently increasing in prevalence. Furthermore, COPD is incurable, and the only therapy that has been shown to increase survival is oxygen therapy in selected patients. Compared to patients with cancer, patients with COPD experience similar levels of pain, breathlessness, fatigue, depression, and anxiety and have a worse quality of life but have comparatively little access to palliative care. When these patients do receive palliative care, they tend to be referred later than patients with cancer. Many disease, patient-, and provider-related factors contribute to this phenomenon, including COPD's unpredictable course, misperceptions of palliative care among patients and physicians, and lack of advance care planning discussions outside of crisis situations. A new paradigm for palliative care would introduce palliative treatments alongside, rather than at the exclusion of disease-modifying interventions. This integrated approach would circumvent the issue of difficult prognostication in COPD, as any patient would receive individualized palliative interventions from the time of diagnosis. These points will be covered in this review, which discusses the challenges in providing palliative care to COPD patients, the strategies to mitigate the challenges, management of common symptoms, and the evidence for integrated palliative care models as well as some suggestions for future development.

An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes.

BACKGROUND: Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice. METHODS: An ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals. RESULTS: Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end-of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions. CONCLUSIONS: The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.

A Time and Place: The Role of Social Workers in Improving End-of-Life Care.

Americans are living longer, but dying after a prolonged period of management of multiple chronic illnesses and functional disabilities. Despite waves of public and professional activity targeted toward improving care for the dying and supporting the families, gaps in care and challenges in end-of-life care persist. Contentious issues such as the so-called "death panels" or physician payment for discussion of advance directives and care wishes at the end of life; aid in dying; and regarding individuals who actively choose death (case of Brittney Maynard) are continually debated in the public media. Progress toward improvement in the experience of dying remains incremental and change has been slow. With the release of a second Institute of Medicine ( 2014 ) report devoted to what it means to die in America in the 21st century, momentum and opportunity for change may increase. If this is to happen, social workers will need to deliver the range of biopsychosocial care that patients and families so desperately need. However, holistic care of the individual will only improve, if the nation also addresses ongoing systemic problems in financing, policy, and service delivery in end-of-life care.

Palliative care at the end of life.

OBJECTIVES: To describe the process of symptom management in the care of oncology patients with advanced cancer. DATA SOURCES: Journal articles, evidence-based reviews, textbooks, and clinical guidelines. CONCLUSION: Symptom management is an essential component of oncology nursing practice that improves quality of life for patients and families throughout the cancer trajectory. IMPLICATIONS FOR NURSING PRACTICE: Effective symptom management requires that oncology nurses holistically assess the patient's symptom experience and goals of care, formulate specific symptom diagnoses, and develop, implement, and evaluate the outcomes of an evidence-based plan of care that is individualized and acceptable to the patient.