Lay Patient Navigators’ Perspectives of Barriers, Facilitators and Training Needs in Initiating Advance Care Planning Conversations With Older Patients With Cancer
Soumya J. NiranjanChao‐Hui HuangJ. Nicholas Dionne‐OdomKarina I. HalilovaMaria PisuPatricia DrenteaElizabeth KvaleKerri S. BevisThomas W. ButlerEdward E. PartridgeGabrielle B. Rocque
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Context: Respecting Choices is an evidence-based model of facilitating advance care planning (ACP) conversations between health-care professionals and patients. However, the effectiveness of whether lay patient navigators can successfully initiate Respecting Choices ACP conversations is unknown. As part of a large demonstration project (Patient Care Connect [PCC]), a cohort of lay patient navigators underwent Respecting Choices training and were tasked to initiate ACP conversations with Medicare beneficiaries diagnosed with cancer. Objectives: This article explores PCC lay navigators’ perceived barriers and facilitators in initiating Respecting Choices ACP conversations with older patients with cancer in order to inform implementation enhancements to lay navigator-facilitated ACP. Methods: Twenty-six lay navigators from 11 PCC cancer centers in 4 states (Alabama, George, Tennessee, and Florida) completed in-depth, one-on-one semistructured interviews between June 2015 and August 2015. Data were analyzed using a thematic analysis approach. Results: This evaluation identifies 3 levels—patient, lay navigator, and organizational factors in addition to training needs that influence ACP implementation. Key facilitators included physician buy-in, patient readiness, and navigators’ prior experience with end-of-life decision-making. Lay navigators’ perceived challenges to initiating ACP conversations included timing of the conversation and social and personal taboos about discussing dying. Conclusion: Our results suggest that further training and health system support are needed for lay navigators playing a vital role in improving the implementation of ACP among older patients with cancer. The lived expertise of lay navigators along with flexible longitudinal relationships with patients and caregivers may uniquely position this workforce to promote ACP.Keywords:
Advance Care Planning
Thematic Analysis
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Background: The concept of advance care planning is largely derived from Western countries. However, the decision-making process and drivers for choosing palliative care in non-Western cultures have received little attention. Aim: To explore the decision-making processes and drivers of receiving palliative care in advance care planning discussions from perspectives of advanced cancer patients, families and healthcare professionals in northern Taiwan. Method: Semi-structured qualitative interviews with advanced cancer patients, their families and healthcare professionals independently from inpatient oncology and hospice units. Thematic analysis with analytical rigour enhanced by dual coding and exploration of divergent views. Results: Forty-five participants were interviewed ( n = 15 from each group). Three main decision-making trajectories were identified: (1) ‘choose palliative care’ was associated with patients’ desire to reduce physical suffering from treatments, avoid being a burden to families and society, reduce futile treatments and donate organs to help others; (2) ‘decline palliative care’ was associated with patients weighing up perceived benefits to others as more important than benefits for themselves; and (3) ‘no opportunity to choose palliative care’ was associated with lack of opportunities to discuss potential benefits of palliative care, lack of staff skill in end-of-life communication, and cultural factors, notably filial piety. Conclusion: Choice for palliative care among advanced cancer patients in Taiwan is influenced by three decision-making trajectories. Opinions from families are highly influential, and patients often lack information on palliative care options. Strategies to facilitate decision-making require staff confidence in end-of-life discussions, working with the patients and their family while respecting the influence of filial piety.
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Studies have identified racial differences in advance care planning and use of hospice for care at the end of life. Multiple reasons for underuse among African American patients and their families have been proposed and deserve further exploration.The goal of this study was to examine perceptions of advance care planning, palliative care, and hospice among a diverse sample of African Americans with varying degrees of personal and professional experience with end-of-life care and use these responses to inform a culturally sensitive intervention to promote awareness of these options.Semistructured interviews and focus groups were conducted with African Americans who had varying degrees of experience and exposure to end-of-life care both personally and professionally. We conducted in-depth qualitative analyses of these interviews and focus group transcripts and determined that thematic saturation had been achieved.Several themes emerged. Participants felt that advance care planning, palliative care, and hospice can be beneficial to African American patients and their families but identified specific barriers to completion of advance directives and hospice enrollment, including lack of knowledge, fear that these measures may hasten death or cause providers to deliver inadequate care, and perceived conflict with patients' faith and religious beliefs. Providers described approaches they use to address these barriers in their practices.Findings, which are consistent with and further elucidate those identified from previous research, will inform design of a culturally sensitive intervention to increase awareness and understanding of advance care planning, palliative care, and hospice among members of the African American community.
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Retrospective analysis of case notes to review the unexpected deaths on a specialist palliative care unit. Our aim was to review and analyse patient notes from our inpatient specialist palliative care unit where death had not been recognised by the treating team. We analysed twenty sets of case notes from March 2020 to March 2021. The following questions were answered; length of admission, documentation about expectation of death and discussion with the patient and relatives about this, last recorded phase of illness and functional status in MDT discussions and if active treatment was being given at the time of death. A thematic analysis was undertaken of these results and several trends were evident. We found that patients with a shorter admission and younger patients who have been resistant to advance care planning discussions were less likely to be identified for the end-of-life record of care. From this research we have identified the need for more open discussions around expectations of death, we have increased the number of professionals undertaking advance care planning courses including doctors and nurses on the inpatient unit. We acknowledge that deaths cannot always be expected, however, we would like to implement more robust advance care planning discussions, proactive management and maximum exposure to MDT management for all patients.
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Abstract Objective: One prerequisite for palliative home care is the relatives' participation in the care. The relatives' situation in palliative home care is unique, as they support the sick person and also have a great need for support themselves. The aim of this care development project was to develop and implement separate structured conversations (SSC) with relatives of patients of an advanced palliative home care team (APHCT). Method: During the project, 61 conversations were held and 55 relatives answered a questionnaire. The questionnaire, eight semistructured interviews with relatives, and three focus-group discussions with nurses constitute the material for the evaluation. Results: Relatives have difficulties separating the SSC from the APHCT's care as a whole. They underline that the SSC was a part of an ongoing process. They also emphasize the value of having a conversation of their own in which the patient was absent, and in which the focus was on the relative's situation. For some, the conversation took place at the APHCT premises. The advantages of that were more privacy and the opportunity to walk around the inpatient palliative care units. The main problem during the project was conducting the SSC soon after the patient was enrolled with the APHCT. Significance of results: Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their willingness to provide care in the home, and mapping out their situation and social network, is a way to support both the relatives and the patients. The common structure of the conversations facilitated the assessment of the relatives' situation but did not hinder individualization according to the relatives' needs. The assumption is that all relatives should be offered a conversation.
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Aim: The purpose of this study, which was part of a large national case study of nurse practitioner (NP) integration in long-term care (LTC), was to explore the NP role in providing palliative care in LTC. Methods: Using a qualitative descriptive design, data was collected from five LTC homes across Canada using 35 focus groups and 25 individual interviews. In total, 143 individuals working in LTC participated, including 9 physicians, 20 licensed nurses, 15 personal support workers, 19 managers, 10 registered nurse team managers or leaders, 31 allied health care providers, 4 NPs, 14 residents, and 21 family members. The data was coded and analysed using thematic analysis. Findings: NPs provide palliative care for residents and their family members, collaborate with other health-care providers by providing consultation and education to optimise palliative care practices, work within the organisation to build capacity and help others learn about the NP role in palliative care to better integrate it within the team, and improve system outcomes such as accessibility of care and number of hospital visits. Conclusions: NPs contribute to palliative care in LTC settings through multifaceted collaborative processes that ultimately promote the experience of a positive death for residents, their family members, and formal caregivers.
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Background: The Institute of Medicine identifies that quality palliative/end-of-life (EOL) care should be provided to patients with serious, life-limiting illnesses and their families by competently prepared health professionals. Purpose: This study assessed perceived concerns of health professionals pertaining to the delivery of palliative/EOL care in the hospital setting. The specific aim was to determine thematic concerns in the delivery of palliative/EOL care which emerged from respondents’ impressions of a memorable palliative/EOL patient experience. Methods: Interdisciplinary health professionals at a large academic health system in the Midwest were surveyed to reflect upon a memorable palliative/EOL life care patient situation (positive or negative). A Thematic Analysis approach was used to code qualitative responses to 4 open-ended questions and then extract themes and subthemes from the coded data. Results: Concerns identified by participants (N = 425) emerged around 7 themes including communication (97%), decision-making/care planning (75%), education needs (60%), EOL care (48%), ethics (24%), satisfaction with care (9%), and spiritual/cultural sensitivity (6%). Conclusion: Challenges exist in the delivery of quality palliative/EOL care in the hospital setting which may be addressed through educational initiatives that focus on recognition of cultural influences on care preferences, improving communication between patients/families and providers, education about the differences between palliative and EOL care, and increased competency of health providers in having EOL/goals-of-care discussions. Health professionals must recognize the benefit of collaborative palliative care in order to meet patient and family needs holistically and comprehensively.
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