L’accompagnement de la fin de la vie tend vers la bientraitance dans les soins, dès l’annonce du diagnostic et durant tout le parcours médical jusqu’au décès. La démarche palliative donne des repères concernant cet accompagnement bienveillant issus du cadre législatif français, de recherches scientifiques internationales, de notre pratique, nos présupposés, notre sensibilité. En Soins Palliatifs (SP), la loi de 2016 régit les derniers temps de la vie en introduisant 3 nouveaux droits : le droit à ne pas subir l’obstination déraisonnable, le droit pour la personne d’être respectée dans sa volonté (notamment par la possibilité de rédiger les Directives Anticipées [DA]), le droit à être soulagé de la douleur et de la souffrance. Cette loi est-elle satisfaisante ? Permet-elle aux français de se donner le choix de leur fin de vie ? Alors que les français accueillent favorablement le droit à la rédaction de DA, peu les ont réellement rédigées (14 %). Que veulent exactement les français pour la fin de leur vie ? Comment ouvrir un espace de parole propice au dialogue sur les souhaits et peurs de la personne en fin de vie ? Ces questions posées par le débat sociétal risquent-elles de favoriser l’évolution de la législation vers le droit à l’euthanasie ou le suicide assisté ? Nous développerons une réflexion étayée par la revue de la littérature internationale et française.
The number of psychiatric patients requesting Euthanasia or Assisted Suicide (EAS) continues to increase. The aims of this systematic review were to: 1) describe the available data related to psychiatric patients having received or requesting EAS (pEAS) for each country in which is allowed; 2) and describe the ethically salient points that arise. PubMed, PsycINFO, and Scopus databases were searched to identify articles published up to September 2020. Among the retrieved publications, only studies on pEAS cases (pEAS-C), pEAS requests, or physician reports/attitude towards pEAS reporting some quantitative data on patients having received or requesting pEAS were retained. Among the 24 included studies, thirteen (54%) were about pEAS in the Netherlands, four (17%) in Belgium, and seven (29%) in Switzerland. Results were different across different countries. In the Netherlands, pEAS-C were mostly women (70-77%) and often had at least two psychiatric disorders (56-97%). Mood disorders were mainly represented (55-70%) together with personality disorders (52-54%). History of suicide attempts was present in 34-52%. Moreover, 37-62% of them had at least one comorbid medical condition. In Belgium pEAS-C were mostly women (75%), but the majority (71%) had a single diagnosis, mood disorder. In Switzerland available data were less detailed. As pEAS-C seem to be very similar to 'traditional suicides', pEAS procedures should be carefully revised to establish specific criteria of access and guidelines of evaluation of the request. A deeper focus on unbearable suffering, decision capacity and possibilities of improvements is warranted as well as the involvement of mental health professionals.
Older African Americans (AAs) with serious illness experience disparities in advance care planning, access to palliative care and hospice, and decision-making at end of life. While culturally specific drivers of care outcomes have been identified, little has been done to standardize integration and application of targeted elements of end-of-life (EOL) interventions for AA populations. A scoping review was conducted to describe and evaluate the benefit of culturally targeted EOL interventions for AAs. A computerized search of empirical and gray literature was completed. Twelve full-text articles, 1 brief report, and 1 abstract describing a total of 14 EOL interventions for AAs with a range of serious illness were reviewed. Interventions were described relative to culturally targeted adaptations and resulting cognitive, emotional, and behavioral outcomes. Most interventions were theory-based and used psychoeducational approaches and interactive discussion and interviews. Significant improvements in psychological and behavioral outcomes were reported including knowledge and self-efficacy (n = 8); self-reported anxiety, depression, and/or well-being (n = 5); and advance care plan completion (n = 3). Few culturally tailored randomized controlled trials (n = 9) have been conducted. Preliminary results show promise for interventions using cultural adaptations. Culturally targeted intervention approaches are feasible to address EOL outcomes for AA patients and families experiencing serious illness.
BACKGROUND: People with life-limiting illness are increasingly having more care provided to them by informal caregivers (ICs) such as family members and friends. Although there is a substantial amount of literature surrounding informal caregiving, there is a paucity of research from a hospice palliative care angle. To address this knowledge gap, this scoping review explored the effects of/challenges to informal caregiving at the end of life in Canada.
METHODS: Scoping review of the literature following Arksey and O'Malley's framework. Key healthcare and social sciences databases alongside the gray literature were searched. Relevant scholarly and gray literature sources from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis employed to summarize findings.
RESULTS: Of 2,717 initial search results, 257 distinct full text articles were obtained. Following deduplication and screening, 33 met inclusion criteria. Four major themes were identified: (1) Physical health challenges, (2) Psycho-socio-spiritual health challenges, (3) Financial issues, and (4) Health system issues. Gender of ICs was also found to be an important contributor to the differing effects of providing support.
CONCLUSIONS: This review raises awareness toward ICs regarding the numerous physical, psycho-socio-spiritual, financial, and health system challenges faced during care for people with life-limiting illness. The knowledge gained will inform and advance future practice, policy, and research. Application to interventions (such as caregiver benefits) will assist to improve informal caregiving experiences and outcomes alongside quality of life. Further research is required to understand these unique experiences and the challenges of minority IC populations.
Although the frequency of advance directives discussions may be increasing, there is a need to improve the quality of these discussions. In a range of advanced medical illnesses, including cancer, poor outcomes with advanced cardiopulmonary life support (ACLS) have been well documented. However, when speaking to patients at the end-of-life, physicians frequently withhold evidence-based information and guidance about prognosis or outcomes of ACLS. Tools and models developed to facilitate communication at the end-of-life do not explicitly include recommendations on advance directives and specifically do not discuss the available evidence on ACLS outcomes in the seriously ill. Here, we review the current literature on outcomes of ACLS and current tools and communications for end-of-life discussions. A majority of patients have a preference for truth-telling and guidance. We advocate an approach that integrates individual goals and preferences with a shared understanding of prognosis and appropriate management options, as judged and recommended by the disease experts, in order to reach an evidence-based decision on advance directives. This pragmatic and ethically justified approach emphasizes active empathic communication to prioritize the care of the patient over the mechanical details of ACLS, thereby aligning end-of-life discussions with current practices in other domains of medicine.
BACKGROUND AND OBJECTIVES: People living with dementia deserve to experience the benefits of receiving palliative care and end-of-life services and supports, yet they often do not receive this care compared to those with other terminal diseases. People living with dementia in rural areas often face additional challenges to accessing such care. The purpose of this scoping review was to systematically review and synthesize the literature on palliative and end-of-life care for people with dementia living in rural areas, and to identify and describe key findings and gaps in the literature.
METHODS: A collaborative research team approach was used in an iterative process across all stages of this review. Systematic, comprehensive searches were conducted across ten databases and eight targeted websites for relevant peer-reviewed, original research and other less formal literature, published in English, which yielded a total of 4476 results. After duplicate removal, screening, and review, 24 items were included for synthesis.
RESULTS: All items were described and illustrated by frequency distribution, findings were grouped thematically, and five key themes emerged, including: 1) Knowledge about dementia, 2) Availability, accessibility, and utilization of palliative and end-of-life care services and supports, 3) Decision-making about care, the value of a person-centered approach and collaborative support, 4) Perspectives on artificial nutrition, hydration, and comfort care, and 5) Quality of life and death. The main gap identified was literature pertaining to rural populations, especially from locations other than the United States. The influence of rurality on relevant findings was mixed across rural-urban comparison studies, as was the effect of sex and gender across the literature.
CONCLUSIONS: Several areas were highlighted including the importance of increasing knowledge about dementia, having early conversations about advanced care and treatment options, providing a person-centered approach, and the potential for using technology to address rural access issues. These findings can be used to inform future research and policy and the development of services, supports, and strategies for rural people living with dementia. Further research is recommended.
Aim: End-of-life care for people with dementia is becoming increasingly important as the global population ages. However, there is no agreed definition of a good death for people with dementia. The current review examined previous literature to establish the current state of knowledge on this issue.
Methods: We conducted a scoping review using a standard methodological framework. Relevant studies were identified from four databases. Studies were included if they were in English, discussed palliative or end-of-life care for dementia, and defined or explained a good death. The definitions or explanations of a good death were categorized into subthemes, and grouped into broader themes.
Results: We identified 11 articles discussing or explaining a good death in dementia, which were published between 2009 and 2017. Most of these studies drew on the views of healthcare professionals and/or family members of people with dementia, and only one considered the views of people with dementia themselves. Ten themes were identified, including pain-free status, peaceful/comfort, dignity, family presence, surrounded by familiar things and people, person-centered communication, spirituality, life completion, treatment preferences, and other.
Conclusions: The characteristics of a good death in dementia showed similarities with those identified more generally. However, there were some themes that were specific to end-of-life care in dementia, notably "surrounded by familiar things and people" and "person-centered communication". To obtain a fuller picture of the nature of a good death in dementia, researchers need to examine the views of people living with dementia.
This study identified the trends in end-of-life care and nursing through text network analysis. About 18,935 articles published until September 2019 were selected through searches on PubMed, Embase, Cochrane, Web of Science, and Cumulative Index to Nursing and Allied Health Literature. For topic modeling, Latent Dirichlet Allocation (K = 8) was applied. Most of the top ranked topic words for the degree and betweenness centralities were consistent with the top 1% through the semantic network diagram. Among the important keywords examined every five years, "care" was unrivaled. When analyzing the two- and three-word combinations, there were many themes representing places, roles, and actions. As a result of performing topic modeling, eight topics were derived as ethical issues of decision-making for treatment withdrawal, symptom management to improve the quality of life, development of end-of-life knowledge education programs, life-sustaining care plan for elderly patients, home-based hospice, communication experience, patient symptom investigation, and an analysis of considering patient preferences. This study is meaningful as it analyzed a large amount of existing literature and considered the main trends of end-of-life care and nursing research based on the core subject control and semantic structure.
Background: Concurrent care enables seriously ill pediatric Medicaid and Children's Health Insurance Program (CHIP) beneficiaries to continue curative treatments along with the supportive services usually associated with hospice care. Although a few studies have examined pediatric concurrent care, none has explored the economics of this care delivery approach for medically complex children.
Objective: The purpose of this study was to identify the cost components relevant for an economic analysis of pediatric concurrent hospice care and demonstrate the use of the cost components in an economic case illustration.
Methods: A scoping review of the hospice cost literature was conducted to identify article focused on hospice costs that were published in the journal literature from 2000 to 2019. A preliminary economic analysis was also conducted using a cost-minimization approach with data from a large mid-Atlantic pediatric hospice provider. We compared costs between concurrent versus standard hospice care for children.
Results: Fifteen hospice cost articles were identified and no article on concurrent care costs. Most articles in the scoping review focused on hospice personnel costs, followed by supplies/equipment, and other. Personnel and costs were higher for standard hospice children compared with concurrent care, whereas concurrent care children had higher supplies/equipment costs.
Conclusions: Identifying cost components are critical to economic analysis of pediatric concurrent care. These findings provide preliminary evidence about the difference in costs between concurrent and standard hospice care for children.
Objectives :Hospitals are the most common place of death in Australia. Bereavement care is recognised by national standards as being central to providing high-quality care at the end of life, and has significant health implications on morbidity, mortality and health service usage. Despite this, bereavement care is not routinely or systematically provided in most Australian hospitals. This study aimed to develop a comprehensive, evidence-based model of bereavement care specific to the needs of an acute Australian adult tertiary hospital.
Methods:This study used a multiple-methods design, which included a scoping literature review, a survey of current institutional bereavement practices, interviews with bereaved family members and staff focus groups and the development of a model of bereavement care for the acute hospital service through advisory group and expert consensus.
Results:Staff and bereaved family members strongly supported a systematic approach to bereavement, perceiving the need for greater support, training, coordination and follow-up. In all, 10 core elements were developed to support a structured model of bereavement care provision and follow-up for the acute hospital organisation.ConclusionsThis evidence-generated model of care promotes the provision of quality and systematic bereavement care in the acute hospital setting.What is known about the topic?Acute hospitals are the most common place to die in Australia, yet there is a lack of understanding of how bereavement care is or should be provided in these environments. The bereavement period is associated with increased use of health services and worse morbidity and mortality, and thus has significant implications for public health. The provision of bereavement care in acute hospitals is often sporadic, often involving untrained staff who may not provide evidence-based care.What does this paper add?This paper describes the development of a comprehensive, evidence-based model of bereavement care specific to the needs of an Australian acute hospital.What are the implications for practitioners?Developing a consistent approach to bereavement for the acute care sector has the potential to support staff, minimise conflict at the end of life, facilitate recognition of those suffering from difficult bereavement and proactively engage services for these people. It is hoped that such a model of care can find relevance across acute hospitals in Australia, to improve the quality and consistency of bereavement care.
We examine and integrate last two decades of research on euthanasia from a cultural perspective. After an exhaustive search from Scopus and Web of Science, 40 studies matching our criteria are included in the review. We qualitatively summarize the literature country-wise and use text map of co-occurring terms in the titles, keywords, and abstracts of these articles to determine the similarities and differences among sub-themes in continental clusters. Research done in Asian, European, North American, and multi-cultural studies suggests that attributes unique to each culture are instrumental in shaping public attitudes towards euthanasia. We also find that some cultures, despite the prevalence of euthanasia, are underrepresented in empirical research. This review of literature on the cultural nuances in end-of-life decisions such as euthanasia is pertinent to social scientists, healthcare professionals and social workers in any given time, but more so during such critical events as worldwide COVID-19 pandemic.
BACKGROUND: Following patient preferences at the end of life should improve outcomes of care, yet patient preferences regarding bladder and bowel care are not often accommodated, as they are not well known in the literature.
AIMS: This scoping review sought to identify bladder and bowel care preferences of patients at the end of life in published literature.
METHODS: Papers published in or after 1997 (in English) that focused on adult preferences for bladder and bowel care at the end of life were included.
FINDINGS: Scant literature exists on preferences for bladder and bowel care for adult patients at end of life. Further investigation is warranted to arrive at a better understanding of preferences regarding bladder and bowel symptom management.
CONCLUSIONS: Future research should explore if prioritising the symptoms caused by incontinence, among the many symptoms experienced at the end of life, could be achieved through careful questioning and development of a standardised tool focused on improving patient care and incorporating patient preferences for care.
Objectives: The aim of this study is to report the results of a second cycle audit of the use of subcutaneous levetiracetam (Keppra®) and an updated literature review of management of seizures in palliative care patients.
Methods: A comprehensive literature review on the use of subcutaneous levetiracetam performed in 2016 was updated. A retrospective audit of the use of subcutaneous levetiracetam for inpatients at Sir Michael Sobell House Hospice during the period of 2019–2020 was performed. Ethical approval was not required and was therefore not sought.
Results: We report an additional 66 cases identified through an updated literature review and our audit. Fourteen articles were identified from the literature review, reporting a total of 120 cases where subcutaneous levetiracetam was administered.
We report 19 further cases of subcutaneous levetiracetam administration between April 2019 and April 2020. Doses ranged from 500 mg to 4000 mg daily. Doses above 2000 mg were administered using a T60 syringe driver. The oral-to-subcutaneous conversion ratio was 1:1 in all but one case where the dose had to be reduced to fit a T34 syringe driver, after which the T60s were purchased. Levetiracetam was not mixed with other medications, but administered alone using water as the diluent for injection. Where necessary, the dose was appropriately adjusted for renal function. No site reactions were reported.
Conclusions: Combined analysis of the 139 cases of subcutaneous levetiracetam administration suggests that this treatment continues to have a role in management of seizures at the end of life. Clinical outcomes suggest that therapeutic levels may be achieved, although there are only very limited data available with a few cases worldwide to support this. Randomized controlled trials are urgently needed to establish the efficacy and tolerability of subcutaneous levetiracetam administration.
Advance care planning is under-used among Black Americans, often because of experiences of racism in the health care system, resulting in a lower quality of care at the end of life. African American faith communities are trusted institutions where such sensitive conversations may take place safely. Our search of the literature identified five articles describing faith-based advance care planning education initiatives for Black Americans that have been implemented in local communities. We conducted a content analysis to identify key themes related to the success of a program's implementation and sustainability. Our analysis showed that successful implementation of advance care planning programs in Black American congregations reflected themes of building capacity, using existing ministries, involving faith leadership, exhibiting cultural competency, preserving a spiritual/Biblical context, addressing health disparities, building trust, selectively using technology, and fostering sustainability. We then evaluated five sets of well-known advance care planning education program materials that are frequently used by pastors, family caregivers, nurse's aides, nurses, physicians, social workers, and chaplains from a variety of religious traditions. We suggest ways these materials may be tailored specifically for Black American faith communities, based on the key themes identified in the literature on local faith-based advance care planning initiatives for Black churches. Overall, the goal is to achieve better alignment of advance care planning education materials with the African American faith community and to increase implementation and success of advance care planning education initiatives for all groups.
OBJECTIVES: Published research in disparities in advance care planning, palliative, and end-of-life care is limited. However, available data points to significant barriers to palliative and end-of-life care among minority adults. The main objective of this scoping review was to summarize the current published research and literature on disparities in palliative and hospice care and completion of advance care planning and directives among non-Hispanc Blacks.
METHODS: The scoping review method was used because currently published research in disparities in palliative and hospice cares as well as advance care planning are limited. Nine electronic databases and websites were searched to identify English-language peer-reviewed publications published within last 20 years. A total of 147 studies that addressed palliative care, hospice care, and advance care planning and included non-Hispanic Blacks were incorporated in this study. The literature review include manuscripts that discuss the intersection of social determinants of health and end-of-life care for non-Hispanic Blacks. We examined the potential role and impact of several factors, including knowledge regarding palliative and hospice care; healthcare literacy; communication with providers and family; perceived or experienced discrimination with healthcare systems; mistrust in healthcare providers; health care coverage, religious-related activities and beliefs on palliative and hospice care utilization and completion of advance directives among non-Hispanic Blacks.
DISCUSSION: Cross-sectional and longitudinal national surveys, as well as local community- and clinic-based data, unequivocally point to major disparities in palliative and hospice care in the United States. Results suggest that national and community-based, multi-faceted, multi-disciplinary, theoretical-based, resourceful, culturally-sensitive interventions are urgently needed. A number of practical investigational interventions are offered. Additionally, we identify several research questions which need to be addressed in future research.
CONTEXT: There is potential value to home-based palliative care for children with serious illness delivered via telemedicine (TM HBPC). Evidence to guide optimal design and delivery of TM HBPC is urgently needed.
OBJECTIVES: To explore the existing literature to identify research on pediatric TM HBPC.
METHODS: Systematic scoping review conducted following PRISMA-ScR guidelines. PubMed, Embase, Cochrane CENTRAL, CINAHL, Web of Science, PsycINFO, and ERIC were searched (January-April 2020) using keywords and controlled vocabulary. The Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework was used to identify components in the literature that facilitate or limit dissemination of TM HBPC interventions.
RESULTS: Seventeen articles were included. Most of the literature comprised small descriptive studies, such as case reports, and feasibility trials. Many studies focused on acceptability, and the TM HBPC model was generally acceptable to both clinicians and families. Few studies measured patient access to care, patient and family-centered health or quality of life outcomes. While included studies addressed multiple criteria for each of the RE-AIM dimensions, much of the information was qualitative and subjective.
CONCLUSION: TM HBPC is a promising strategy to increase access to palliative care for children with serious illness. However, the current review found a need for more robust information describing implementation and effectiveness of TM HBPC models, adaptation across care settings, and maintenance over time in order to guide and facilitate broader dissemination.
BACKGROUND: Nurses play an important role in assessing and managing pain. However, this is often poorly managed for people living with dementia.
AIM: To explore nurses' experiences of pain management in end-of-life dementia care.
METHODS: Using the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines, a systematic narrative review of research papers published in English between 2008 and 2018 was conducted. Data sources were CINAHL, Medline, PsycINFO, ScienceDirect and SocIndex. Articles focused on nursing at the end of life and pain management in people with dementia.
FINDINGS: Eight articles were retrieved that met the search criteria. Four studies used qualitative methodology, two quantitative and two mixed methods. Studies from the UK dominated (n=5), the remainder were from Sweden, Norway and the US. Following thematic analysis, three themes were identified: training and education in pain management at the end of life for people with dementia, challenges in identifying pain and pain assessment tool use.
CONCLUSION: The review revealed inadequate education for nurses concerning end-of-life care for people living with dementia, notably concerning pain recognition and use of assessment tools. It is recommended that specialist education is mandated for all nurses working with this client group to improve care delivery.
CONTEXT: Supplementary support services in palliative care for older people are increasingly common, but with neither recommended tools to measure outcomes nor reviews synthesizing anticipated outcomes. Common clinically focused tools may be less appropriate.
OBJECTIVES: To identify stakeholder perceptions of key outcomes from supplementary palliative care support services, then map these onto outcome measurement tools to assess relevance and item redundancy.
METHODS: A scoping review using the design by Arksey and O'Malley. EMBASE, CINAHL, MEDLINE, and PSYCHinfo searched using terms relating to palliative care, qualitative research, and supplementary support interventions. Articles were imported into Endnote™, and Covidence™ was used by two reviewers to assess against inclusion criteria. Included articles were imported into NVivo™ and thematically coded to identify key concepts underpinning outcomes. Each item within contender outcome measurement tools was assessed against each concept.
RESULTS: Sixty included articles focused on advance care planning, guided conversations, and volunteer befriending services. Four concepts were identified: enriching relationships; greater autonomy and perceived control; knowing more; and improved mental health. Mapping concepts to contender tool items revealed issues of relevance and redundancy. Some tools had no redundant items but mapped only to two of four outcome themes; others mapped to all concepts, but with many redundant questions. Tools such as ICECAP-Supportive Care Measure and McGill Quality of Life had high relevance and low redundancy.
CONCLUSION: Pertinent outcome concepts for these services and population are not well represented in commonly used outcome measurement tools, and this may have implications in appropriately measuring outcomes. This review and mapping method may have utility in fields where selecting appropriate outcome tools can be challenging.
BACKGROUND: We performed a systematic literature review and meta-analysis measuring the burden of antibiotic use during end-of-life (EOL) care.
METHODS: We searched PubMed, CINAHL (EBSCO platform), and Embase (Elsevier platform), through July 2019 for studies with the following inclusion criteria in the initial analysis: antibiotic use in the EOL care patients (advanced dementia, cancer, organ failure, frailty or multi-morbidity). If the number of patients in palliative care consultation (PCC) was available, antibiotic use data were pooled to compare the proportion of patients who received antibiotics under PCC compared to those not receiving PCC. Random-effect models were used to obtain pooled mean differences, and heterogeneity was assessed using the I2 value.
RESULTS: Overall, 72 studies met the inclusion criteria and were included in the final review: 22 EOL studies included only patients with cancer; 17 studies included only patients with advanced dementia; and 33 studies included "mixed populations" of EOL patients. Although few studies reported antibiotic using standard metrics (eg, days of therapy), 48 of 72 studies (66.7%) reported antibiotic use in >50% of all patients. When the 3 studies that evaluated antibiotic use in PCC were pooled together, patients under PCC was more likely to receive antibiotics compared to patients not under PCC (pooled odds ratio, 1.73; 95% CI, 1.02-2.93).
CONCLUSIONS: Future studies are needed to evaluate the benefits and harms of using antibiotics for patients during EOL care in diverse patient populations.
Context: The unmet needs of patients with advanced disease are indicative of the patient centredness of healthcare. By tracking unmet needs in clinical practice, palliative interventions are aligned with patient priorities, and clinicians receive support in intervention delivery decisions for patients with overlapping, complex needs.
Objective: Identify tools used in everyday clinical practice for the purpose of identifying and addressing unmet healthcare needs for patients with advanced disease.
Methods: We conducted PubMed and Cumulative Index of Nursing and Allied Health Literature searches to include studies published between 1 January 2008 and 21 April 2020. Three concepts were used in constructing a search statement: (1) patient need, (2) validated instrument and (3) clinical practice. 2313 citations were reviewed according to predefined eligibility, exclusion and inclusion criteria. Data were collected from 17 tools in order to understand how instruments assess unmet need, who is involved in tool completion, the psychometric validation conducted, the tool’s relationship to delivering defined palliative interventions, and the number of palliative care domains covered.
Results: The majority of the 17 tools assessed unmet healthcare needs and had been validated. However, most did not link directly to clinical intervention, nor did they facilitate interaction between clinicians and patients to ensure a patient-reported view of unmet needs. Half of the tools reviewed covered =3 dimensions of palliative care. Of the 17 tools evaluated, 4 were compared in depth, but all were determined to be insufficient for the specific clinical applications sought in this research.
Conclusion: A new, validated tool is needed to track unmet healthcare needs and guide interventions for patients with advanced disease.