Palliative Care Framework Research Articles

Position paper on undergraduate Palliative Medicine education for doctors in South Africa.

BackgroundBasic palliative care teaching should be included in training curricula for health care providers (HCPs) at all levels of the health service to ensure that the goal set by the South African (SA) National Policy Framework and Strategy for Palliative Care, to have an adequate number of appropriately trained HCPs in South Africa, is achieved. Furthermore, palliative learning objectives for nurses and doctors should be standardised. Many SA medical schools have integrated elements of Palliative Medicine (PM) teaching into undergraduate medical training programmes for doctors; however, the degree of integration varies widely, and consensus and standardisation of the content, structure and delivery of such PM training programmes are not yet a reality.AimThis joint position paper aims to describe the current state of undergraduate medical PM teaching in South Africa and define the PM competencies required for an SA generalist doctor.SettingPalliative Medicine programme leads and teachers from eight medical schools in South Africa.MethodsA survey exploring the structure, organisation and content of the respective medical undergraduate PM programmes was distributed to PM programme leads and teachers.ResultsResponses were received from seven medical schools. Through a process of iterative review, competencies were defined and further grouped according to suitability for the pre-clinical and clinical components of the curriculum.ConclusionThrough mapping out these competencies in a spiralled medical curriculum, the authors hope to provide guidance to medical curriculum designers to effectively integrate PM teaching and learning into current curricula in line with the goals of the SA National Policy Framework and Strategy on Palliative Care (NPFSPC).

Development of a national quality framework for palliative care in a mixed generalist and specialist care model: A whole-sector approach and a modified Delphi technique.

In a predominantly biomedical healthcare model focused on cure, providing optimal, person-centred palliative care is challenging. The general public, patients, and healthcare professionals are often unaware of palliative care's benefits. Poor interdisciplinary teamwork and limited communication combined with a lack of early identification of patients with palliative care needs contribute to sub-optimal palliative care provision. We aimed to develop a national quality framework to improve availability and access to high-quality palliative care in a mixed generalist-specialist palliative care model. We hypothesised that a whole-sector approach and a modified Delphi technique would be suitable to reach this aim. Analogous to the international AGREE guideline criteria and employing a whole-sector approach, an expert panel comprising mandated representatives for patients and their families, various healthcare associations, and health insurers answered the main question: 'What are the elements defining high-quality palliative care in the Netherlands?'. For constructing the quality framework, a bottleneck analysis of palliative care provision and a literature review were conducted. Six core documents were used in a modified Delphi technique to build the framework with the expert panel, while stakeholder organisations were involved and informed in round-table discussions. In the entire process, preparing and building relationships took one year and surveying, convening, discussing content, consulting peers, and obtaining final consent from all stakeholders took 18 months. A quality framework, including a glossary of terms, endorsed by organisations representing patients and their families, general practitioners, elderly care physicians, medical specialists, nurses, social workers, psychologists, spiritual caregivers, and health insurers was developed and annexed with a summary for patients and families. We successfully developed a national consensus-based patient-centred quality framework for high-quality palliative care in a mixed generalist-specialist palliative care model. A whole-sector approach and a modified Delphi technique are feasible structures to achieve this aim. The process we reported may guide other countries in their initiatives to enhance palliative care.

Stakeholder perspectives towards implementing the national framework on palliative care in Canada

ContextIn 2018 Health Canada developed a national framework and subsequent action plan for palliative care. Collaboration and implementation by stakeholder organizations however continues to take place without coordination. Little is known about their attitudes toward national policy development and motivation to work together. MethodsWe employ a well-known stakeholder analysis framework to identify and understand the attitudes of key stakeholders. Organizations that have contributed to national palliative policy development over the past 25 years were identified and prioritized. In this paper, we survey key stakeholders to understand their attitudes towards collaboration and implementation of the 2018 Framework. A novel method to identify homogeneous stakeholder cohorts was developed. FindingsFifty-four out of 75 key organizations (72%) completed the survey. Organizations genuinely support the Framework. However, three-quarters of organizations were not confident in their abilities to strongly influence national palliative care policies. Barriers to collaboration include differences in governance models and funding arrangements, a lack of resources and divergent priorities. Homogeneous stakeholder cohorts and in-depth analysis of stakeholder characteristics resulted in recommendations to support targeted engagement strategies. ConclusionsImplementation of national palliative care policies requires a large-scale coordinated approach involving all stakeholders. Recommendations are centered on the premise that targeted and tailored stakeholder engagement needs to be coordinated and is superior to a one-size fits all approach.

End of life of the cancer patient: patient, family and physician perceptions

Chronic diseases such as cancer have imposed challenges on health systems. Colombia has worked on the construction and implementation of a legal framework for palliative care, but a comprehensive approach to the care provided to cancer patients at the end of their lives is still lacking. Such an approach should be based on understanding of the perceptions of its different actors in order to allow for adequate decision-making and improved support during this stage.
 Currently, the infrastructure to provide adequate oncological support is insufficient, the administrative procedures that patients and families have to go through to get authorization for treatments and medications for symptom relief are overwhelming and, many times, costs must be paid out of pocket.
 On the other hand, it is important to train healthcare personnel to develop communication skills to approach patients from a place of compassion, personal development and reflection, creating spaces in which patients can speak openly about their wishes, fears and worries, even if they come together with the desire to accelerate the end of life. In addition, healthcare staff should support and initiate conversations about life and the end of life between patients and their families if this communication is complicated, given its importance for healthcare, quality of life and death.
 This article seeks to reflect on the end of life of the cancer patient from the perceptions of the actors involved, namely, patients, caregivers and healthcare professionals.

Improving palliative care with Maslow's hierarchy of needs

BackgroundAdvanced cardiac diseases causes a person to face issues concerning the meaning of life, death and an uncertain future. It can be challenging to improve the quality of life of those who are living with a terminal illness. For patients with a compromised cardiovascular health state, implementing a palliative care framework could play a key role in alleviating suffering and grief. This article aims to apply a modified version of Abraham Maslow's hierarchy of needs to provide effective palliative care to patients with cardiac conditions.MethodsA narrative review was conducted using PubMed, ScienceDirect and Google scholar search engines to extract relevant literature and evidence-based practices.ResultsMaslow's hierarchy of needs can also be adapted to palliative care of patients with terminal cardiac illnesses. Priority should be given to low hierarchical stages, leading to the highest physical symptoms management, personal and social security, acceptance and love during illness, restoration of self-esteem, and self-actualisation and transcendence.ConclusionsAdvanced cardiac diseases have long-term effects on a patient's life. The challenge is to provide holistic care to meet the physical, psychosocial, and spiritual needs of vulnerable patients through the use of appropriate palliative care plans. A modified version of Maslow's hierarchy of needs in palliative care for cardiovascular diseases could be effectively applied for the assessment of patients' requirements and the planning of interventions to achieve aims that initiate wellbeing and potentially cover the experience of transcendence.

Use of machine learning to transform complex standardized nursing care plan data into meaningful research variables: a palliative care exemplar.

The aim of this article was to describe a novel methodology for transforming complex nursing care plan data into meaningful variables to assess the impact of nursing care. We extracted standardized care plan data for older adults from the electronic health records of 4 hospitals. We created a palliative care framework with 8 categories. A subset of the data was manually classified under the framework, which was then used to train random forest machine learning algorithms that performed automated classification. Two expert raters achieved a 78% agreement rate. Random forest classifiers trained using the expert consensus achieved accuracy (agreement with consensus) between 77% and 89%. The best classifier was utilized for the automated classification of the remaining data. Utilizing machine learning reduces the cost of transforming raw data into representative constructs that can be used in research and practice to understand the essence of nursing specialty care, such as palliative care.

Patient/Caregiver and Expert Stakeholder Perspectives on High‐Quality Palliative Care for Patients with Advanced Cancer

Research ObjectiveTo inform priorities for palliative care quality monitoring using natural language processing applied to clinical notes in electronic health records, we aimed to describe expert stakeholder and patient/caregiver conceptualizations of high‐quality palliative care for patients receiving care for advanced cancer.Study DesignWe conducted two modified RAND‐UCLA appropriateness panels to prioritize palliative care process quality measures relevant to patients with advanced cancer from the perspective of cancer patients/caregivers and cancer palliative care expert health system stakeholders. We identified 64 candidate quality measures via a measure scan. Next, expert panelists discussed and prioritized quality measures. To facilitate ease of comprehension, we had patients/caregivers discuss, evaluate, and prioritize a sub‐set of 21 quality measures highly rated by the expert panel. Panel discussions (8 hours each) were recorded, transcribed, and independently double‐coded in Atlas.ti using an a priori framework for palliative symptom care: 1) experience of illness/symptoms, 2) screening/assessment/diagnosis 3) management/plan/treatment, 4) iterative management (follow‐up), and 5) documentation, as well as one emergent theme: 6) equity. Quotations were examined separately within each code and themes were generated through team discussion until consensus was reached.Population StudiedThe panels were composed of ten palliative care expert stakeholders: 7 physicians, 2 nurses, 1 social worker) and nine patients/caregivers with cancer experience.Principal FindingsPatients/caregivers and expert stakeholders contributed different perspectives of what high quality symptom care means for advanced cancer patients. Patients/caregivers emphasized the need for comprehensive and proactive screening and assessment, especially for pain and mental health symptoms, due to reluctance to being perceived as “weak” and beliefs that there is “not a heck of a lot [clinicians] can do” to address their symptoms. Patients/caregivers valued continuity and communication among their many clinical care providers as well as acknowledgment or discussion of the written information they provided (e.g., on a symptom screening form). Expert stakeholders emphasized the need for symptom screening to be tied to management plans, rather than measuring them separately, as well as the need to treat symptoms to patient satisfaction rather than an “artificial number.” Expert stakeholders expressed uncertainty about the best way to ask about or acknowledge symptoms, like fatigue, that have few management options. Patients/caregivers and expert stakeholders agreed on the need to prioritize “iterative” management to monitor the efficacy of treatment plans and the need to monitor differences in care quality provided to medically underserved and minority populations.ConclusionsPatients contribute a unique perspective to quality measure prioritization, which is typically the domain of clinicians and administrators. Patients and caregivers took a “systems view” of quality, based on their experiences interacting with clinicians inside and outside VA. Expert stakeholders, in contrast, took a “one on one” view of quality, emphasizing measurability of the aspects of care under the control of a single clinician. Incorporating the perspective of patients/caregivers highlighted the importance of proactive symptom screening for providing high quality palliative care for patients with advanced cancer.Implications for Policy or PracticeFuture efforts to automate quality monitoring should find ways to incorporate and operationalize patient conceptualizations of healthcare quality.Primary Funding SourceDepartment of Veterans Affairs.

How Universal Is Palliative Care in Colombia? A Health Policy and Systems Analysis

Colombia's health sector reform has been recognized for its universal health (UHC) coverage scheme. However, this reform evolved without palliative care (PC), thereby omitting a core element of UHC. In this paper, we analyze the Colombian health system reform and health policies in relation to PC. We present the history, innovations, successes, and shortcomings of the reform and summarize the lessons learned to strengthen efforts leading to PC integration. Our analysis is based on the WHO public health framework for PC (policy, access to medicines, education, service provision). For several years and especially during the last decade, the government enacted laws and regulations to improve access to essential medicines and to integrate PC. Relative to other countries in Latin America, Colombia was the first to launch a PC service and to accredit palliative medicine as a specialty, the second to establish a national PC association and one of the few countries with a specific PC law. However, data shows that there are still too few services to meet the PC needs of approximately 250,000 adult patients annually. Our analysis shows that the country's failure to integrate PC most likely is a result of limited health worker education. Advocacy efforts should include deans of schools and provosts, in addition to policy makers and regulators. Other possible factors affecting uptake and implementation of existing national policies are civil unrest and limited collaboration between government offices. Additional research is needed to evaluate the impact of these and other related factors on PC integration in Colombia.

What should be measured to assess the quality of community-based palliative care? Results from a collaborative expert workshop.

The need for palliative care (PC) will continue to increase in Canada with population aging. Many older adults prefer to "age in place" and receive care in their own homes. Currently, there is a lack of standardized quality indicators (QIs) for PC delivered in the community in Canada. A one-day workshop collected expert opinions on what should be measured to capture quality PC. Three brainstorming sessions were focused on addressing the following questions: (1) what is important to measure to support quality PC, regardless of setting? (2) Of the identified measures, are any of special importance to care provided in the home? (3) What are the challenges, barriers, and opportunities for creating these measures? The National Consensus Project (NCP) for Quality Palliative Care framework was used as a guide to group together important comments into key themes. The experts identified four themes that are important for measuring quality, regardless of care setting, including access to care in the community by a multidisciplinary team, care for the individual with PC needs, support for the informal caregiver (e.g., family, friends), and symptom management for individuals with PC needs. Two additional themes were of special importance to measuring quality PC in the home, including spiritual care for individuals with PC needs and home as the preferred place of death. The challenges, barriers, and potential opportunities to these quality issues were also discussed. PC experts, through this collaborative process, made a substantial contribution to the creation of a standardized set of QIs for community-based PC. Having a standardized set of QIs will enable health care professionals and decision makers to target areas for improvement, implement interventions to improve the quality of care, and ultimately, optimize the health and well-being of individuals with a serious illness.

Preferences of quality delivery of palliative care among cancer patients in low- and middle-income countries: A review.

All forms of cancer pose a tremendous and increasing problem globally. The prevalence of cancer across the globe is anticipated to double over the next two decades. About 50% of most cancer cases are expected to occur in low- and middle-income countries (LMICs), where there is a greater disproportionate level in mortality. Access to effective and timely care for cancer patients remains a challenge, especially in LMICs due to late disease diagnosis and detection, coupled with the limited availability of appropriate therapeutic options and delay in proper interventions. This study explored several mixed-method researches and randomized trials that addressed the preferences of quality delivery of palliative care among cancer patients in LMICs. A designated set of keywords such as Palliative Care; Preferences; Cancer patients; Psycho-social Support; End-of-life Care; Low and Middle-Income Countries were inserted on electronic databases to retrieve articles. The databases include PubMed, Scinapse, Medline, The Google Scholar, Academic search premier, SAGE, and EBSCO host. Findings from this review discussed the socioeconomic and behavioral factors, which address the quality delivery of palliative care among cancer patients. These factors if measured with acceptance level in cancer patients could help to address areas that need improvement from the stage of disease diagnosis to the end-of-life. Valuable collaborations among international and local health institutions are needed to build and implement a systematic framework for palliative care in LMICs. Policies and programs that are country and culturally specific, encompassing both theoretical and practical models of care in the milieu of existing quandaries should be developed.

Palliative Care Development in the Asia Pacific Region: A Review of Assessment Indicators

ContextOrganizations such as Asia Pacific Hospice Palliative Care Network functions to promote quality palliative care development through training and education, research collaboration and variety relevant projects and events for all in the Asia and Pacific region. ObjectivesTo summarise and further compare existing development indicators used in Asia Pacific region for palliative care. MethodsThe current review used Whittemore and Knafl ’s framework for integrative reviews. PubMed, Embase, CINAHL and Google Scholar databases were searched for eligible studies. This review focused on palliative care development according to the domains and indicators identified by the World Health Organization Public Health Strategy and ATLANTES Palliative Care Research Group. Joanna Briggs Institute critical appraisal checklists were adopted to assess the methodological quality of included studies. ResultsTen studies were included and two main findings were identified: 1) There was a strong evidence of educational preparation, use of medicines and service provision for palliative care development in Asia Pacific and 2) Professional activities and policy geared towards palliative care development were limited and had relative emphasis at a country-level in Asia Pacific. ConclusionPalliative care development is largely influenced by policies and funding structures as well as by cultural views and beliefs of stakeholders. It is expected that individuals, stakeholders and practitioners in Asia Pacific might have differing views and cultural beliefs when compared to the European or western counterparts. The lack of details and documentation in the region and inadequate reporting measures impacts on the development of strong palliative care framework.

Preparing End-of-Life Talks in Palliative Care: Exploratory Remarks on a Social Process

In this article, we develop an exploratory analysis of some of the interactional strategies developed by palliative care (PC) professionals in order to prepare end-of-life (EoL) talks with patients and their families, namely in the frame of specifically social problem-solving work which they develop on a daily basis. In this sense, our object of analysis is not EoL talks in themselves, but the broader social processes that tend to precede them in PC, that is, all the work both of approaching the patient and his or her family and of coordination within the teams that PC professionals routinely do in order to propitiate EoL talk. In this way, we don’t envisage EoL talks as a conversation between two parties, with a patient on one side and a doctor on the other side, but as a wider social process which relies upon strong and previous professional engagement. The analysis conducted herein was carried out on data collected under the projects ETIC – Managing EoL trajectories in palliative care: a study on the work of healthcare professionals (Ref. PTDC/SOC-SOC/30092/2017) and Building paths towards death: an analysis of everyday work in palliative care (Ref. PTDC/CS-SOC/119621/2010), both financed by the Portuguese Science and Technology Foundation (FCT); in particular the data obtained through 17 months (12 in the first project and 5 in the second one, still in progress) of ethnographic observation carried out at two hospital internment units providing PC in Mainland Portugal and 42 (37 in the first project and 5 in the second one, still in progress) in-depth interviews to professionals in PC – physicians, nurses, and social workers. As main results, we present several theoretical and empirical elements relevant to the analysis of the field of EoL communication in the context of interactions between healthcare professionals, patients and their families. Following earlier studies on the same theme, we show how the work of preparing EoL conversations refers to a broader social process preceding those conversations. We believe that our findings may contribute to elucidating this dimension of the intervention of PC professionals, thus being instrumental for the future definition of systematised guidelines and recommendations in the framework of PC.

Palliative Care in Movement Disorders: an Evolving Field.

Purpose of ReviewThis review summarizes the current state of evidence for palliative care (PC) in movement disorders, describes the application of PC to clinical practice, and suggests future research directions.Recent FindingsPC needs are common in persons living with movement disorders and their families from the time of diagnosis through end-of-life and contribute to quality of life. Early advance care planning is preferred by patients, impacts outcomes and is promoted by PC frameworks. Systematic assessment of non-motor symptoms, psychosocial needs and spiritual/existential distress may address gaps in current models of care. Several complementary and emerging models of PC may be utilized to meet the needs of this population.SummaryA PC approach may identify and improve important patient and caregiver-centered outcomes. As a relatively new application of PC, there is a need for research to adapt, develop and implement approaches to meet the unique needs of this population.

Implementation of Primary Palliative Care in five Belgian regions: A qualitative study on early identification of palliative care needs by general practitioners

Background To deliver optimal palliative care, a Care Pathway for Primary Palliative Care (CPPPC) was developed. This CPPPC was implemented by general practitioners (GPs) in territories of five Belgian palliative care networks (2014–2016). Belgian doctors have much therapeutic freedom, and do not commonly follow guidelines. Objectives To assess how palliative care was provided by GPs before the CPPPC and its implementation project were presented publicly. Methods Between 2013 and 2015, seven focus groups with GPs were conducted. Participants included 15 GPs in three French-speaking focus groups and 26 GPs in four Dutch-speaking focus groups, with diversity for age, gender, palliative care experience and practice context. Some GPs implemented the CPPPC later. Results GPs considered each palliative care case unique and disliked strict protocols. However, they expressed a need for peer review and reflective frameworks. GPs felt it is important to identify palliative care patients ‘timely’, but found this difficult. Screening methods help, but are not widely used. GPs struggled most with identifying palliative care needs in non-oncological patients. Bad news breaking was considered difficult. Continuity of care was considered very important. However, advance care planning seemed more widely practised by Dutch-speaking GPs than by French-speaking GPs. The taboo of palliative care provoked emotional discussions. Conclusion Palliative care frameworks which help GPs to deliver ‘tailor-made’ care have more chance to be adopted than strict protocols. GPs should be given education for bad news breaking. Palliative care and advance care planning practices differ locally: guideline dissemination plans should respect these local differences.

Prevalence and correlates of unmet palliative care needs in dyads of Chinese patients with advanced cancer and their informal caregivers: a cross-sectional survey.

To examine palliative care needs of advanced cancer patients and their informal caregivers and correlates of their needs within Chinese context. This was a cross-sectional survey conducted in two study sites in Mainland China. Patients and caregivers were recruited in dyads. Patients completed the following questionnaires: Problems and Needs in Palliative Care-short version, Hospital Anxiety and Depression Scale (HADS), Edmonton Symptom Assessment Scale (ESAS), Medical Outcomes Study-Social Support Survey (MOS-SSS), Brief Coping Orientation to Problems Experienced Scale (Brief-COPE), and Quality-of-Life Questionnaire Core 15-Palliative Care Scale. Questionnaires for caregivers were as follows: Comprehensive Needs Assessment Tool in Cancer for Caregivers, HADS, ESAS, MOS-SSS, Brief-COPE, and Caregiver Quality of Life Index-Cancer. All of the outcome variables were selected based on a conceptual framework of palliative care needs assessment. Four hundred nineteen patient-caregiver dyads completed this survey. Patients' unmet palliative care needs were mainly related to financial (85.2%), informational (82.3%), physical (pain) (69.7%), and psychological (64.9%) domains. Caregivers' commonly reported unmet needs mainly focused on the domains of healthcare staff (95.0%), information (92.1%), and hospital facilities and services (90.5%). Patients' greater severity of symptom distress, presence of anxiety and/or depression, use of coping strategies particularly the less use of problem-focused coping, and caregivers' poorer quality of life were identified as key negative predictors of the needs of both patients and caregivers (p < 0.05). Both patients and caregivers had context-bounded palliative care needs. In addition to increasing the amount of external asistance, more emphasis should be placed on screening for physical and psychological distress, the use of coping strategies, and the well-being of caregivers to help identify those in need for more clinical attention and specific interventions.

A Pilot Cross-Discipline Evidence-Based Palliative Care Curriculum for Postgraduate Medical Trainees

IntroductionIt is widely recognized that physicians of all backgrounds benefit from having a general palliative care skill set to optimally manage their patients at the end of life. However, strategies to teach palliative care skills to trainees outside palliative medicine vary widely. In this report, we provide an evidence-based and cross-disciplinary palliative care framework applicable to a spectrum of specialty training environments and intended for nonpalliative care trainees. InnovationWe developed and implemented a concise, multimodal, and evidence-based pilot palliative care curriculum focused on essential general palliative care skills required by physicians providing patient care along the continuum of life across specializations. A needs assessment (local research, literature review, and consensus expert opinion) in combination with learner characteristics (Kolb Learning Style Inventory, Palliative Medicine Comfort and Confidence Survey, and knowledge pretest) informed the development of a curricular outline. The first iteration of the curriculum was formulated and delivered. Extensive evaluation, reassessment, and feedback led to a second iteration, which is presented here. OutcomesAlthough the context will differ according to specialization, there are essential palliative care skills required of most specialist physicians. General palliative themes identified for focus include symptom management, communication, psychosocial aspects of care, care coordination and access, and myths and pitfalls in palliative care. CommentSpecialty trainees' value embedded training in essential themes in palliative care within the context of their training program. The process and results of this project, including the provision of a framework, may be applied to postgraduate training programs in various specialties.

Hastened death due to disease burden and distress that has not received timely, quality palliative care is a medical error

All healthcare services strive to achieve the six factors of quality health care – safe, effective, patient-centered, timely, efficient and equitable. Yet multiple structural, process, policy and people factors can combine to result in medical error and patient harm. Measuring the quality of palliative care has many challenges due to its presence across multiple health sectors, variable skill and experience of providers and lack of defined processes for providing services. In Canada there is screening for symptoms and distress in most cancer centers, but not in non-cancer diseases. Screening for distress and disease burden can identify suffering, that when properly addressed, improves quality of life and reduces depression and hopelessness that can lead to requests for hastened death.Our hypothesis is that some requests for hastened death (known as Medical Assistance in Dying or MAiD in Canada) are driven by lack of access to palliative care or lack of quality in the palliative care attempting to address disease burden and distress such that the resulting provision of hastened death is a medical error. The root cause of the error is in the lack of quality palliative care in the previous weeks, months and years of the disease trajectory – a known therapy that the system fails to provide. The evidence for palliative care addressing symptoms and improving quality of life and mood as well as providing caregiver support is established. Early evidence supporting the use of psychotherapeutics in emotional and existential distress is also considered.We present three cases of request for assisted death that could be considered medical error. The paper references preliminary evidence from a review of previous access to palliative care in a limited number of MAiD cases showing that only a minority were identified as having palliative care needs prior to the admission where MAiD was provided. The evidence linking disease burden to hopelessness, depression and hastened death is provided. The many studies revealing the inequity or underservicing of the Canadian population with regards to palliative care are reviewed.We examine a recent framework for palliative care in Canada and point out the need for more aggressive use of standards, process and policies to ensure that Canadians are receiving quality palliative care and that it is equitably accessible to all.

Palliative Care for Family Caregivers.

Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient's declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient's death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver's situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions.

Standards, Guidelines, and Quality Measures for Successful Specialty Palliative Care Integration Into Oncology: Current Approaches and Future Directions.

Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.

Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners.

Living with Parkinson disease (PD) is complicated by an unpredictable disease course which can delay planning for future needs. This study explores patient and care partner needs related to future planning using a palliative care framework with physical, psychological, social, cultural, end-of-life, and ethical aspects of care in PD to guide analysis. Secondary analysis of patient and care partner interviews from a randomized clinical trial comparing interdisciplinary outpatient palliative care versus standard care for individuals with PD and care partners in an academic setting. Sixty participants were interviewed (30 patients and 30 care partners) about needs related to future planning. Team-based thematic analysis was used to identify key themes. Many care partners and patients living with PD described a desire for information about what to expect and how to plan for the future. Participants posed multiple questions about PD progression and devised the metaphor of a "roadmap" as a guide for decision making and planning. When exploring the concept of a PD roadmap, five themes emerged: (I) desire for a comprehensive tool for future planning, such as a roadmap, (II) care partner preferences for specific future planning, (III) PD-related life changes as opportunity for future planning and decision-making, (IV) cues from family, peers, and medical professionals about "location" on the roadmap, and (V) opportunities and challenges to integrating a PD roadmap into patient-centered care. Patients and care partners described key needs related to future planning that can inform a comprehensive roadmap to assist with education, communication, and decision making. A roadmap tool can promote individualized anticipatory guidance and multidimensional shared decision-making discussions between patients, care partners, and the healthcare team related to PD progression.