Care Planning Process Research Articles

Comparing Advance Care Planning in Young-Onset Dementia in the USA vs Belgium: Challenges Partly Related to Societal Context

ObjectivesAdvance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers. DesignAn exploratory qualitative study. Setting and participantsWe purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient. MethodsWe conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis. ResultsImportant similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians. Conclusions and implicationsSpecific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made.

25 A Pilot Implementation of Providing Enhanced Support to Care Homes within A Primary Care Network

Abstract Introduction People living with severe frailty in care homes are vulnerable to frequent non-elective hospital attendances. However provision of enhanced healthcare support to care home residents can reduce this risk and increase quality of life for residents.1 The framework for enhanced health in care homes (EHCH) summarises best practice in this area and provides guidance for implementing services.2 Methods This study was a pilot implementation of the EHCH framework based on a Primary Care and Specialist Frailty Multidisciplinary Team (MDT) and delivered on a Primary Care Network (PCN) footprint. The MDT targeted five care homes in a PCN area with historically high levels of non-elective attendances. The model of care was based on the principle of anticipatory care planning, training and support for care home staff to understand and implement plans. Results Over the pilot period of 9 months, non-elective attendances from the 5 homes reduced by 27% compared to the previous year, which was a significant reduction (p<0.042). There was variation between the homes in the reduction in non-elective attendances with the greatest impact seen in the homes that had the highest level of attendance at training and engagement in the care planning process. Feedback received from the care home staff indicated that they felt more confident to refer to the care plans and had alternative options to calling 999. A quality audit of the care plans completed as part of the pilot revealed a number of additional training needs for clinicians completing the plans to ensure consistency of recoding. This training was delivered following the pilot period. Conclusions The pilot demonstrated that the EHCH framework could be successfully implemented on a PCN footprint. Analysis shows this implementation coincided with a reduction in non-elective attendances from the targeted homes. Further analysis is required to compare the impact in different homes and to understand contributing factors. The pilot implementation provides helpful information to inform PCN development.

A qualitative case study exploring the implementation of pharmacist care planning services in community pharmacies

ObjectivesTo describe the comprehensive annual care plan (CACP) process and to conceptualize how remunerated CACP services were implemented by community pharmacists. DesignA comparative, multiple case study approach with data comprising document review, observation, and semistructured interviews. Setting and participantsPharmacists, pharmacy technicians and staff, and student pharmacists from 4 different community pharmacy sites in Alberta, Canada, including independent, franchise, and corporate chain pharmacies. In addition, patients and other health care providers were included in the interviews. Outcome measuresConstructivist grounded theory was used to understand how care planning services were implemented in the real-world context of community pharmacies and how pharmacists provided CACPs within their practice. ResultsBetween May 2016 and January 2018, a total of 77 interviews and 94 hours of observations were completed at the 4 pharmacy sites, and 61 documents were collected. The CACP service required adaptation of the workflow at each of the sites. However, pharmacists and other pharmacy staff recognized benefits of the service with respect to pharmacists’ role expansion. The overarching grounded theory concept was changing the status quo. The following 4 themes emerged representing how the service was implemented: engaging patients, professional development and learning from experience, creating a supportive environment, and building community connections. ConclusionThis study found that practice change or changing the status quo was needed to implement remunerated care planning services in community pharmacies. The results of this study may be of interest to community pharmacists, pharmacy managers, and policy makers who are implementing remunerated care planning services in other jurisdictions.

Current Practice in Preoperative Virtual and Physical Simulation in Neurosurgery.

In brain tumor surgery, an appropriate and careful surgical planning process is crucial for surgeons and can determine the success or failure of the surgery. A deep comprehension of spatial relationships between tumor borders and surrounding healthy tissues enables accurate surgical planning that leads to the identification of the optimal and patient-specific surgical strategy. A physical replica of the region of interest is a valuable aid for preoperative planning and simulation, allowing the physician to directly handle the patient’s anatomy and easily study the volumes involved in the surgery. In the literature, different anatomical models, produced with 3D technologies, are reported and several methodologies were proposed. Many of them share the idea that the employment of 3D printing technologies to produce anatomical models can be introduced into standard clinical practice since 3D printing is now considered to be a mature technology. Therefore, the main aim of the paper is to take into account the literature best practices and to describe the current workflow and methodology used to standardize the pre-operative virtual and physical simulation in neurosurgery. The main aim is also to introduce these practices and standards to neurosurgeons and clinical engineers interested in learning and implementing cost-effective in-house preoperative surgical planning processes. To assess the validity of the proposed scheme, four clinical cases of preoperative planning of brain cancer surgery are reported and discussed. Our preliminary results showed that the proposed methodology can be applied effectively in the neurosurgical clinical practice both in terms of affordability and in terms of simulation realism and efficacy.

Influence of clinical context on interpretation and use of an advance care planning policy: a qualitative study.

Advance care planning is a process through which people share their values, goals and preferences regarding future medical treatments with the purpose of aligning care received with patient wishes. The objective of this study was to explore perspectives from patients and clinicians in 4 clinical settings to understand how context influences interpretation and application of advance care planning processes. This study used a qualitative interpretive descriptive design. Patient and clinician participants were recruited across 4 clinical outpatient settings (cancer, heart failure, renal failure and supportive living) in Calgary and Edmonton. Data were collected between 2014 and 2015 by means of recorded one-on-one semistructured interviews. We analyzed the data using thematic analysis in 2016-2017. Thirty-four patients and 34 clinicians participated in interviews. Themes common to all 4 contexts were lack of shared understanding between patients and clinicians, and a lack of consistent clinical process related to advance care planning. Advance care planning understanding and process varied substantially between contexts. This variation seemed to be driven by differences in perceptions around disease burden and the nature of the physician-patient relationship. Provision of a system-wide policy and procedural framework alone was not found to be sufficient to form a standardized approach to advance care planning, as considerable variability existed in advance care planning process between and within clinical settings. Quality-improvement methods that consider local processes, gaps and barriers can help in developing a consistent, comprehensive process.

HOW MEDICAL EDUCATION ALLEVIATED ETHICAL DILEMMAS IN RESIDENTS DURING END-OF-LIFE FAMILY MEETINGS IN THE SOUTH TEXAS

The UTRGV DHR Internal Medicine Program conducted a study addressing end of life (EOL) care focused on our Hispanic community in regards to communication and trust between patients, caregivers, and healthcare providers. Our residents train at a community hospital which cares for an 89% Hispanic population of 1.2 million, spanning over 4 counties of the Rio Grande Valley. Trainees are often involved in family meetings while treating hospitalized, terminally ill patients. Although family meetings are a standard approach in palliative care, Hispanic family meetings tend to occur more often and with a larger, extended family unit. Our intent was to educate our residents to initiate conversations about EOL care choices promoting delivery of patient-centered, family oriented care utilizing culturally appropriate information regarding EOL issues. Baseline surveys were provided to all 39 trainees which assessed anxiety, incompetence, and communication skills in delivering bad news during family meetings. An advanced care planning process was implemented over 3 months with a goal to engage patients in EOL conversations, initiation, and completion of advanced directives. Residents received weekly training on interactive methods and ethical concepts including group discussions, role-playing, and demonstrations which were culturally and linguistically appropriate. We found that physician competence in conducting Hispanic family meetings is vital. Residents completed a post-training survey resulting in 100% improved attitudes and behaviors such as confidence, satisfaction, caring and empathy. They felt more comfortable and prepared to speak to a larger family unit who was likely to ask a lot of questions and request multiple meetings.

Audit of fidelity of implementation of the Older prisoner Health and Social Care Assessment and Plan (OHSCAP)

ABSTRACTNumbers of older prisoners have been increasing in recent years and there is no national strategy addressing their care. Older prisoners have more physical health needs, complex social care needs and high rates of mental disorder compared with younger prisoners. These needs are often not identified or addressed. We developed the Older prisoner Health and Social Care Assessment and Plan (OHSCAP), a structured approach for identifying and managing the health and social care needs of older prisoners. It consists of an assessment, care plan and review of needs. The current study aims to establish the fidelity of implementation of the OHSCAP as part of a larger RCT. Compliance with training and the manual, identification of needs and quality of care planning were all audited. Results showed that the OHSCAP was not implemented as intended. Identified needs were not consistently translated into care plan actions. There was little evidence to suggest prisoner involvement in the care planning process. Clear difficulties in collaborative working were also idenfified. Implications with respect to effectively embedding complex interventions within prisons, along with wider policy related issues affecting the entire prison estate are discussed.

Action research study on advance care planning for residents and their families in the long-term care facility

BackgroundResearch in Taiwan has indicated that advance care planning is rarely undertaken in long-term care facilities. The purpose of this study was to develop an advance care planning interview guideline and care model to facilitate the process of advance care planning for residents and their families in long-term care facilities.MethodsThis study follows an action research design. Cycles of planning, action, observation, and reflection were planned and modified based on the results of interviews with residents and their families as well as meetings with staff. To establish the interview guideline and care model through this action research study, residents and their families were interviewed separately. The researcher subsequently held meetings with staff members to evaluate the results and identify problems during each advance care planning process. This information was synthesised and used to modify the care model for implementation with the next resident–family pair. This process was performed a total of ten times.ResultsThis study included residents (N = 10), their families (N = 20), and medical staff (N = 4) at a long-term care facility. The interviews and meetings were audio recorded, transcribed, and subjected to a simple thematic analysis together with the field notes and reflection logs. Four themes emerged from the data related to: opening the conversation with the interview guidelines about the life story of residents; continuing life stories to the quality of remaining years of the residents; gradually changing the topic to the end-of-life care issues; and concluding the conversation by explaining the content of advance directives and hospice care.ConclusionsThe advance care planning care model was implemented following logical thinking from a Chinese perspective. This consisted of opening, developing, changing, and concluding through the views of Confucianism, Buddhism, and Taoism. The research findings indicate that the model successfully facilitated the process of advance care planning for residents and their families.

MENTAL HEALTH ACT, MALTA 2012 - A personal reflection on 5 years working with a new legal framework

Abstract The Commissioner for the Promotion of Rights of Persons with Mental Disorders (CMH) was established in Article 5 of the Mental Health Act approved by the Maltese Parliament in December 2012. The whole Act was completely in force on 10th October 2014. The involuntary care process is being closely monitored. Patients are being followed up within the time-frames established by the new law. Although not strictly comparable, length of stay in involuntary care has diminished radically. Patients are being discharged from compulsory treatment orders or transferred to community treatment orders rather than being left on “leave of absence”. Community involuntary care is the preferred option of following up difficult cases. This shift requires commitment to strengthen community support services and render them sustainable. The applications for involuntary care are progressively being better completed and the quality of the information backing requests for involuntary detention of persons is improving. Care plans are being submitted, but their completeness and their quality merits revision. The issue of availability of human resources is a critical issue which regularly features in feedback with care teams. Evidence of greater involvement of patients and responsible carers in the care planning process should be better documented if it is indeed happening. The level of awareness of patients’ rights in terms of the Act merits deeper evaluation. The CMH must continue to provide a voice to vulnerable persons with mental disorders and their loved ones. Maximization of the potential of persons with mental disorders is not only a question of social justice but also critical for the sustainability of our health system and the prosperity of our society. The burden of mental disorders is increasing exponentially with the modernization of our society and those who are not coping with this burden merit active consideration and support. Key messages Public health advocacy and the improvement of patient rights. The use of legislative tools in reforming service delivery.

Transitional care planning: A pilot study to explore patient, hospital, and primary care perspectives

The care plan aims to align key stakeholders via the exchange of meaningful, timely, and actionable patient care information during transitions of care. This exploratory study used a qualitative approach that includes field observations and semi-structured interviews to further understand the barriers and current process of care planning. A thematic analysis identified clinician strategies in addition to barriers at system, care-team, and patient levels. Specific themes included limited time and resources to establish value-based care, inconsistent/vague role definitions across settings, disconnections in care team communication, inconsistent care planning definitions and goals, patients’ lack of knowledge of care planning, and social behavioral determinants that prevent patients from engaging in their care planning. Further research is necessary to gain a deeper understanding of these barriers and clinician strategies to support a clearer definition of the care planning process.

Making Advance Directives Visual: Introducing Young Adults to Advance Care Planning With Video-Recorded Advance Directives.

The complexities surrounding the dying process may distort rational decision-making and impact care at the end of life. Advance care planning, which focuses on identifying the individual's definition of quality of life, holds great potential to provide clarity at the end of life. Currently, young adults are not the intended audience for advance care planning. A quality improvement project engaged 36 college-age adults in structured group advance care planning discussions and evaluated the perceived value of a self-recorded advance directive. Findings from a pre- and postintervention survey suggested that young adults welcomed a conversation about end-of-life care; they wished for more information and expressed that a video-recorded advance directive stimulated thoughts about their own definition of quality of life. Participants' improved self-perception of comfort, confidence, certainty, and knowledge regarding the advance care planning process and end-of-life care indicated young adults may be a willing and eager population for the expansion of advance care planning. In addition to directing advance care planning to a younger audience, a personal video-recorded advance directive may complement the current advance care planning process and aid individuals in defining their quality of life.

'There's more to life than money and health': Family caregivers' views on the role of Power of Attorney in proxy decisions about research participation for people living with dementia.

People living with dementia may experience difficulties when making decisions for themselves in the later stages of the condition. While there are mechanisms in England and Wales for appointing an attorney to make decisions about welfare and finances on their behalf, there are no provisions for appointing an attorney to make future decisions about research participation. This is despite a growing focus on Advanced Care Planning and other processes that provide opportunities to discuss future preferences and ensure that decisions are made in line with those preferences. This qualitative study with 15 family caregivers who had acted as research proxies explored the role of Power of Attorney in their decisions about research, and their views about extending current legal arrangements to include research. Five themes were identified: the holistic nature of decision-making; the 'power' of attorney; making decisions by putting yourself in their shoes; support for bringing research under the umbrella of attorney arrangements and a unifying theme of trusting relationships. Legal provisions for prospectively appointing a research proxy may encourage discussion about future wishes and so enable decisions about research to be made that are in accordance with the person's preferences and wishes. However, further consultation with the public including people living with dementia and their families, and a range of stakeholders is needed. Providing guidance to families, people living with dementia and the wider research community may provide greater clarity and improve decision-making in the meantime.

Improving the survivorship care plan process across an academic and community cancer center.

184 Background: The goal of a survivorship care plan (SCP) is to improve provider coordination and engage patients in their care. Despite requirements from professional societies, implementation of SCPs is challenging. From April to July 2018, 36% of eligible patients received an SCP at our institution. We aimed to identify barriers to SCP completion and implement interventions to increase their delivery for all cancer types at our academic and community cancer sites. Methods: We created a survey to assess physician, nursing and trainee perceptions and identify barriers to SCP completion. The survey was sent to providers within our medical, surgical, and radiation oncology departments. Providers were asked to rate their satisfaction with our current SCP process and identify obstacles and solutions to achieve SCP completion. In response, we held meetings between oncology attendings, trainees, tumor registry staff, and health information management personnel to design an improvement plan. Results: Of 178 providers, 74 (41.6%) responded. Four percent were satisfied with our current process. The most frequently cited barriers were time (62.1%), lack of clarity regarding who completes the SCP (52%), and insufficient personnel (47.3%). The most frequently cited solutions were dedicated personnel (84.9%), disease-specific templates (61.6%), and education regarding SCPs (48.1%). Based on these results, we: (1) Streamlined our SCP process by entering a partially-templated SCP into an eligible patient’s electronic medical record by our tumor registrar; (2) Asked for disease-specific recommendations that can be included in the template; (3) Asked providers to identify additional team members who assist with SCP completion so that SCPs can be appropriately queued; and (4) Designed an online educational module. Conclusions: We identified multiple barriers to SCP completion at our institution. In response, we implemented a multifaceted improvement plan across our academic and community cancer sites. An analysis of its effects are forthcoming.

Decision support intervention (Plan Well Guide) for patients and their substitute decision-makers to improve engagement in advance care planning: protocol for a randomised trial

ObjectiveThe purpose of this randomised trial is to evaluate the efficacy of a decision support intervention for serious illness decisions (the Plan Well Guide decision aid; www.PlanWellguide.com) in increasing the...

Incongruence of Patient Problem Information Across Three Phases of Home Care Admission: There's a Problem with the Problem List.

In home health care, the patient problem list is an important component of the admission and care planning processes and determines the subsequent care received. We examined the information received from the referring facilities and its relationship with the final patient problem list generated at home health care admission. Researchers observed 12 admissions and collected available documents related to the admission and care planning process. Problems identified in documents provided to admission nurses (input documents) and in documents subsequently created by those nurses (output documents) were coded to form a standardized set of problem terms across the documents. Documents available, distribution of problems within the documents, and concordance between input and output documents were assessed. A varying number of the 17 unique problems found across the documents were distributed by document type. Patients were referred to home health care with more clinical problems than were documented in the output documents.

Improving Preoperative Completion of Advanced Care Planning Documents in Patients With Expected Postoperative Intensive Care Unit Stay.

Directed discussion about advanced care planning in the preoperative setting is often lacking. We implemented an educational intervention pilot to increase the number of high-risk patients who have health care proxy and advanced directives documents completed. We developed a novel short video describing the advanced care planning process and the intensive care setting, encouraging patients to have conversations about advanced care planning. Survey results showed that majority of patients felt the intervention increased their knowledge about advanced care planning (65%-70%) and that the video raised some topics worth discussing with family and health care providers. This intervention is scalable and could improve documentation and quality of care.

Making decisions on health care for children / adolescents with complex chronic conditions: a review of the literature.

The profile of pediatric care has gone through changes in Brazil and in the world. This process becomes more visible in surveys that deal with hospital admission or specialized outpatient care data. This fact leads us to the idea that it is in such spaces that these children and subjects who care for them are more visible and negotiate decisions. We aim to perform a state of the art literature review on decision making discussions and definitions, analyzing the current research in light of the theoretical Mol perspectives on the actors' logics of chronic diseases care; And the perspective of care goods exchanges in the dialogue between Martins and Moreira, triggering the Theory of Gift. The synthesis of the literature shows that decision making may be understood as a care planning process in which family, patients and health professionals are involved, and is linked to the family-centered care model. In terms of difficulties, we point out the prevalence of a dynamic that favors a criticizable choice because of the risks of inequality, such as the lack of discussion on the options and the actuation of the family mostly in times of difficult decisions.

Advance care planning with chronically ill patients: A relational autonomy approach.

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process.

Looked After Children as Decision Makers: Family Group Conferences in Practice

ABSTRACT Family Group Conferences (FGCs) are a family-led approach to social care decision making. The fundamental philosophy behind FGCs is that families are the experts on their own situations and as such should lead decision-making. The model advocates that children should be at the centre of decisions about them and should be supported to have their say at their FGC. The voice of looked after children too often gets lost in decision-making processes. Children report that professionals make decisions about them, rather than with them. FGCs have the potential to meaningfully engage with looked after children. Many services already offer FGCs to looked after children, either to consider family alternatives to local authority care, to make contact arrangements or to engage children in the care planning process. This paper will examine the use of FGCs in engaging with looked after children. It applies a case study approach, focusing on the Camden FGC Service, which has been offering FGCs to looked after children for several years. It will also draw on the existing evidence base that examines the use of FGCs with looked after children. In practice, sometimes the voice of the child can become overlooked at their FGC. Children report that their opinions get ignored by the adults in their family. Hence, this paper concludes with a discussion of how to ensure that looked after children are meaningfully engaged in decision making about their lives.

The Impact of the Psychiatrist on the Life Care Plan.

A life care plan is a tool that is used for medical treatment planning and management purposes in many settings, including legal and forensic applications. This article summarizes the life care planning process and emphasizes the role of the psychiatrist in establishing a strong medical foundation for the plan. The psychiatrist's expertise in determining the nature and extent of the evaluee's psychiatric illness, prognosis, need for and likely benefit from treatment, and costs of care inform the life care planning process. Advising life care planners on these matters is a natural extension of the work of psychiatrists and forensic psychiatrists, who are accustomed to providing medical opinions to the courts. There are specific challenges when the psychiatrist creates recommendations for the life care plan; they include determining long-term prognosis, devising treatment plans, and identifying malingering. These questions are explored to assist the psychiatrist in providing the foundation for a life care plan.