Showing papers on "End-of-life care published in 2014"

The effects of advance care planning on end-of-life care: a systematic review.

Abstract: Background: Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. Advance care planning could potentially improve end-of-life care, but the methods/tools used are varied and of uncertain benefit. Outcome measures used in existing studies are highly variable. Aim: To present an overview of studies on the effects of advance care planning and gain insight in the effectiveness of different types of advance care planning. Design: Systematic review. Data sources: We systematically searched PubMed, EMBASE and PsycINFO databases for experimental and observational studies on the effects of advance care planning published in 2000-2012. Results: The search yielded 3571 papers, of which 113 were relevant for this review. For each study, the level of evidence was graded. Most studies were observational (95%), originated from the United States (81%) and were performed in hospitals (49%) or nursing homes (32%). Do-not-resuscitate orders (39%) and written advance directives (34%) were most often studied. Advance care planning was often found to decrease life-sustaining treatment, increase use of hospice and palliative care and prevent hospitalisation. Complex advance care planning interventions seem to increase compliance with patients' end-of-life wishes. Conclusion: The effects of different types of advance care planning have been studied in various settings and populations using different outcome measures. There is evidence that advance care planning positively impacts the quality of end-of-life care. Complex advance care planning interventions may be more effective in meeting patients' preferences than written documents alone. More studies are needed with an experimental design, in different settings, including the community.

Communication About Serious Illness Care Goals: A Review and Synthesis of Best Practices

Abstract: An understanding of patients’ care goals in the context of a serious illness is an essential element of high-quality care, allowing clinicians to align the care provided with what is most important to the patient. Early discussions about goals of care are associated with better quality of life, reduced use of nonbeneficial medical care near death, enhanced goal-consistent care, positive family outcomes, and reduced costs. Existing evidence does not support the commonly held belief that communication about end-of-life issues increases patient distress. However, conversations about care goals are often conducted by physicians who do not know the patient, do not routinely address patients’ nonmedical goals, and often fail to provide patients with sufficient information about prognosis to allow appropriate decisions; in addition, they tend to occur so late in the patient’s illness that their impact on care processes is reduced. This article (1) reviews the evidence and describes best practices in conversations about serious illness care goals and (2) offers practical advice for clinicians and health care systems about developing a systematic approach to quality and timing of such communication to assure that each patient has a personalized serious illness care plan. Best practices in discussing goals of care include the following: sharing prognostic information, eliciting decision-making preferences, understanding fears and goals, exploring views on trade-offs and impaired function, and wishes for family involvement. Several interventions hold promise in systematizing conversations with patients about serious illness care goals: better education of physicians; systems to identify and trigger early discussions for appropriate patients; patient and family education; structured formats to guide discussions; dedicated, structured sections in the electronic health record for recording information; and continuous measurement. We conclude that communication about serious illness care goals is an intervention that should be systematically integrated into our clinical care structures and processes.

How many people need palliative care? A study developing and comparing methods for population-based estimates

Abstract: Background:Understanding the need for palliative care is essential in planning services.Aim:To refine existing methods of estimating population-based need for palliative care and to compare these m...

Implementing patient-reported outcome measures in palliative care clinical practice: A systematic review of facilitators and barriers

Abstract: Background:Many patient-reported outcome measures have been developed in the past two decades, playing an increasingly important role in palliative care. However, their routine use in practice has ...

Palliative and End-of-Life Care in Stroke A Statement for Healthcare Professionals From the American Heart Association/American Stroke Association

Abstract: Background and Purpose—The purpose of this statement is to delineate basic expectations regarding primary palliative care competencies and skills to be considered, learned, and practiced by provide...

Estimates of the Need for Palliative Care Consultation across United States Intensive Care Units Using a Trigger-based Model

Abstract: Rationale: Use of triggers for palliative care consultation has been advocated in intensive care units (ICUs) to ensure appropriate specialist involvement for patients at high risk of unmet palliative care needs. The volume of patients meeting these triggers, and thus the potential workload for providers, is unknown. Objectives: To estimate the prevalence of ICU admissions who met criteria for palliative care consultation using different sets of triggers. Methods: Retrospective cohort study of ICU admissions from Project IMPACT for 2001–2008. We assessed the prevalence of ICU admissions meeting one or more primary palliative care triggers, and prevalence meeting any of multiple sets of triggers. Measurements and Main Results: Overall, 53,124 (13.8%) ICU admissions met one or more primary triggers for palliative care consultation. Variation in prevalence was minimal across different types of units (mean 13.3% in medical ICUs to 15.8% in trauma/burn ICUs; P = 0.41) and individual units (mean 13.8%, median 13.0%, interquartile range, 10.2–16.5%). A comprehensive model combining multiple sets of triggers identified a total of 75,923 (19.7%) ICU admissions requiring palliative care consultation; of them, 85.4% were captured by five triggers: (1) ICU admission after hospital stay greater than or equal to 10 days, (2) multisystem organ failure greater than or equal to three systems, (3) stage IV malignancy, (4) status post cardiac arrest, and (5) intracerebral hemorrhage requiring mechanical ventilation. Conclusions: Approximately one in seven ICU admissions met triggers for palliative care consultation using a single set of triggers, with an upper estimate of one in five patients using multiple sets of triggers; these estimates were consistent across different types of ICUs and individual units. These results may inform staffing requirements for providers to ensure delivery of specialized palliative care to ICU patients nationally.

Scope and Outcomes of Surrogate Decision Making Among Hospitalized Older Adults

Abstract: Importance Hospitalized older adults often lack decisional capacity, but outside of the intensive care unit and end-of-life care settings, little is known about the frequency of decision making by family members or other surrogates or its implications for hospital care. Objective To describe the scope of surrogate decision making, the hospital course, and outcomes for older adults. Design, Setting, and Participants Prospective, observational study conducted in medicine and medical intensive care unit services of 2 hospitals in 1 Midwestern city in 1083 hospitalized older adults identified by their physicians as requiring major medical decisions. Main Outcomes and Measures Clinical characteristics, hospital outcomes, nature of major medical decisions, and surrogate involvement. Results According to physician reports, at 48 hours of hospitalization, 47.4% (95% CI, 44.4%-50.4%) of older adults required at least some surrogate involvement, including 23.0% (20.6%-25.6%) with all decisions made by a surrogate. Among patients who required a surrogate for at least 1 decision within 48 hours, 57.2% required decisions about life-sustaining care (mostly addressing code status), 48.6% about procedures and operations, and 46.9% about discharge planning. Patients who needed a surrogate experienced a more complex hospital course with greater use of ventilators (2.5% of patients who made decisions and 13.2% of patients who required any surrogate decisions; P P P P P Conclusions and Relevance Surrogate decision making occurs for nearly half of hospitalized older adults and includes both complete decision making by the surrogate and joint decision making by the patient and surrogate. Surrogates commonly face a broad range of decisions in the intensive care unit and the hospital ward setting. Hospital functions should be redesigned to account for the large and growing role of surrogates, supporting them as they make health care decisions.

Factors associated with initiation of advance care planning in dementia: a systematic review.

Abstract: Background: Planning ahead may be particularly relevant in dementia considering patients' cognitive decline and difficulty to predict the course of the dementia. Objective: To identify factors associated with initiation of advance care planning (ACP) regarding end-of-life issues in dementia. Methods: Systematic review of the PubMed, Embase, Cinahl, Psychinfo, and Cochrane databases until January 2013. We included articles reporting on empirical research, identifying factors related to initiation of ACP defined as starting a discussion, starting the decision making, or having a documented patient-written advance directive. Results: Of 4,647 unique articles, we assessed 178 as full-texts, and included 33. Most designs (64%) were qualitative; 42% limited to moderate to severe, and 6% to mild to moderate stages. Perspectives varied: family (33%), professional caregivers (24%), patient (15%), or multiple (27%). A variety of factors with complex interplay was involved in initiating ACP. Family factors dominated, with family's initiative or lack of it, and willingness or reluctance to engage in initiating ACP identified in a series of studies. Further, professional caregivers' initiative or lack of it and patient's health status were important factors that facilitated or hindered initiating ACP. Ethnic minority status of those involved and family distance may be barriers. Continuity of care and health care system factors also affected initiating of ACP. Conclusion: Professional caregivers may initiate ACP early if strategies carefully consider timing and family and patient receptiveness or reluctance, and are family and patient-centered. Interventions should address the complexity of interrelated system and personal factors affecting initiation of ACP. © 2014 IOS Press and the authors. All rights reserved.

Decision Aids for Advance Care Planning: An Overview of the State of the Science

Abstract: Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record, and physicians are accurate only about 65% of the time when predicting patient preferences for intensive care. Decision aids can support the advance care planning process by providing a structured approach to informing patients about care options and prompting them to document and communicate their preferences. This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. Using interviews of key informants and a search of the gray and published literature from January 1990 to May 2014, the authors found that many decision aids are widely available but are not assessed in the empirical literature. The 16 published studies testing decision aids as interventions for adult advance care planning found that most are proprietary or not publicly available. Some are constructed for the general population, whereas others address disease-specific conditions that have more predictable end-of-life scenarios and, therefore, more discrete choices. New decision aids should be designed that are responsive to diverse philosophical perspectives and flexible enough to change as patients gain experience with their personal illness courses. Future efforts should include further research, training of advance care planning facilitators, dissemination and access, and tapping potential opportunities in social media or other technologies.

Imminence of death among hospital inpatients: Prevalent cohort study.

Abstract: Background:There is a dearth of evidence on the proportion of the hospital population at any one time, that is in the last year of life, and therefore on how hospital policies and services can be o...

Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice?

Abstract: Background Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We aimed to determine bereaved parent and clinician preferences for location to EOL care and death. Procedure We administered questionnaires to 75 bereaved parents (response rate 54%) and 48 pediatric oncology clinicians (response rate 91%) at a large teaching hospital. Main outcome measure was parent and clinician ranking for preferred location of EOL care and death if given the options of home, hospital or FSPH. Results Majority of parents and clinicians ranked home as their first choice for EOL care (70.2% and 87%, respectively) and death (70.8% and 89.1%, respectively). Compared to clinicians, parents gave a higher ranking to hospital (P < 0.01) and lower ranking to FSPH (P < 0.01) as the preferred location for EOL care and death. Congruence between actual and preferred location of EOL care was more likely when a palliative care team was involved (P < 0.01) and less likely for children with haematologic malignancies (P = 0.03). Conclusions Parents and clinicians prefer home as the location for EOL care and death for children with cancer. Hospital based palliative care is a preferred alternative if home is not desired. FSPH is a relatively recent phenomena and further research needs to be directed towards understanding its cost benefit in comparison to home and hospital-based EOL care. Pediatr Blood Cancer 2014;61:859–864. © 2013 Wiley Periodicals, Inc.

Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*.

Abstract: Objective:To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease.Design:Cross-sectional multicenter survey study of bereaved parents.Setting:Two tertiary care pediatric hospitals.Subjects:Parents of children younger than 21 years with primary car

Recognizing, Naming, and Measuring a Family Intensive Care Unit Syndrome

Abstract: Most major decisions in the intensive care unit (ICU) regarding goals of care are shared by clinicians and someone other than the patient. Multicenter clinical trials focusing on improved communication between clinicians and these surrogate decision makers have not reported consistently improved outcomes. We suggest that acquired maladaptive reasoning may contribute importantly to failure of the intervention strategies tested to date. Surrogate decision makers often suffer significant psychological morbidity in the form of stress, anxiety, depression, and post-traumatic stress disorder. Family members in the ICU also suffer cognitive blunting and sleep deprivation. Their decision-making abilities are eroded by anticipatory grief and cognitive biases, while personal and family conflicts further impact their decision making. We propose recognizing a family ICU syndrome to describe the morbidity and associated decision-making impairment experienced by many family members of patients with acute critical illne...

Music therapy for end‐of‐life care

Abstract: Reason for withdrawal from publication At March 2014, the Cochrane Pain, Palliative and Supportive Care Review Group withdrew this review as the authors were no longer available to complete the update. For more information, please contact Managing Editor Anna Hobson, anna.hobson@ndcn.ox.ac.uk,

The association of spiritual care providers' activities with family members' satisfaction with care after a death in the ICU*

Abstract: OBJECTIVES Spiritual distress is common in the ICU, and spiritual care providers are often called upon to provide care for patients and their families. Our goal was to evaluate the activities spiritual care providers' conduct to support patients and families and whether those activities are associated with family satisfaction with ICU care. DESIGN Prospective cohort study. SETTING Three hundred fifty-bed tertiary care teaching hospital with 65 ICU beds. SUBJECTS Spiritual care providers and family members of patients who died in the ICU or within 30 hours of transfer from the ICU. INTERVENTIONS None. MEASUREMENTS AND MAIN RESULTS Spiritual care providers completed surveys reporting their activities. Family members completed validated measures of satisfaction with care and satisfaction with spiritual care. Clustered regression was used to assess the association between activities completed by spiritual care providers and family ratings of care. Of 494 eligible patients, 275 family members completed surveys (response rate, 56%). Fifty-seven spiritual care providers received surveys relating to 268 patients, completing 285 surveys for 244 patients (response rate, 91%). Spiritual care providers commonly reported activities related to supporting religious and spiritual needs (≥ 90%) and providing support for family feelings (90%). Discussions about the patient's wishes for end-of-life care and a greater number of spiritual care activities performed were both associated with increased overall family satisfaction with ICU care (p < 0.05). Discussions about a patient's end-of-life wishes, preparation for a family conference, and total number of activities performed were associated with improved family satisfaction with decision-making in the ICU (p < 0.05). CONCLUSIONS Spiritual care providers engage in a variety of activities with families of ICU patients; several are associated with increased family satisfaction with ICU care in general and decision-making in the ICU specifically. These findings provide insight into spiritual care provider activities and provide guidance for interventions to improve spiritual care delivered to families of critically ill patients.

Exploring the financial impact of caring for family members receiving palliative and end-of-life care: A systematic review of the literature

Abstract: Background:Research regarding the economic dimensions of palliative care is relatively limited. The economic implications of providing informal care are well recognised; however, within the context of palliative care, little is known about the costs and implications of providing care for a loved one at the end of life.Aim:To explore the financial costs and the financial impact of caring for family members receiving palliative/end-of-life care.Design:A systematic literature review of empirical research following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.Data Sources:Seven electronic databases were searched from inception to April 2012. Inclusion criteria were as follows: articles relating to the financial costs or implications of family caregiving at the end-of-life care, English language articles, empirical research or systematic reviews and articles relating to adults.Results:The review identified 21 relevant articles; however, evidence relating to the costs a...

Doing Template Analysis: Evaluating an End of Life Care Service.

Abstract: In this article, we introduce the reader to Template Analysis, a method of thematically organising and analysing qualitative data in social science research. We outline the basic principles of the method and describe the main procedural steps involved in undertaking Template Analysis. We then use an example from our own research (the qualitative evaluation of an end of life care service in the United Kingdom) to demonstrate how Template Analysis can be successfully applied in a real world research setting.

Transitions at the end of life for older adults – patient, carer and professional perspectives: a mixed-methods study

Abstract: Background The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs. Objective The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories. Setting England. Participants Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services. Design and methods This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10. Results Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff. Conclusions Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions. Funding The National Institute for Health Research Health Services and Delivery Research programme.

Advance Directives And Nursing Home Stays Associated With Less Aggressive End-Of-Life Care For Patients With Severe Dementia

Abstract: The number of older adults with cognitive impairment is increasing, and such adults often require a surrogate to make decisions about health care. However, little is known about the aggressiveness ...

Death and caring for dying patients: exploring first-year nursing students' descriptive experiences

Abstract: Aim: To describe first-year nursing student`s expereinces of witnessing death and providing end-of-life care. Methods: This study is a part of a larger longitudial prject. Interviews (n=17) were co ...

End-of-Life Treatment Preferences: A Key to Reducing Ethnic/Racial Disparities in Advance Care Planning?

Abstract: BACKGROUND The objective of this study was to identify targets for interventions to reduce end-of-life care disparities among patients with advanced cancer. To do this, the authors evaluated the degree to which end-of-life care values and preferences are associated with advance care planning within racial/ethnic minority groups. METHODS The Coping with Cancer study recruited patients with advanced cancer from outpatient clinics in 5 states from 2002 to 2008. Then, the rates of 1 type of advance care planning—do-not-resuscitate (DNR) orders—reported at baseline interviews by 606 patients were investigated. Bivariate tests determined associations among DNR order completion, religious values, and treatment preferences within racial/ethnic groups. RESULTS Non-Latino white patients were significantly more likely to have a DNR order (45%) than black (25%) and Latino (20%) patients (P<.001). A preference against specific life-prolonging treatment (eg, chemotherapy, ventilation) was the only factor significantly associated with higher DNR order likelihood in each group, with non-Latino white patients more likely than Latino or black patients to express preferences against life-prolonging care (eg, 26% of non-Latino white patients, 46% of black patients, and 41% of Latino patients wanted a feeding tube if it would extend life for 1 more day; P<.001). CONCLUSIONS Preferences against life-prolonging care differ dramatically by race/ethnicity, but they have a uniform significant association with DNR order completion rates across racial/ethnic groups of patients with advanced cancer. Advance care planning interventions that target preferences associated with DNR orders across racial/ethnic groups may reach a broad patient population and reduce end-of-life care disparities. Cancer 2014;120:3981–3986. © 2014 American Cancer Society.

Development of a supportive care measure for economic evaluation of end-of-life care using qualitative methods

Abstract: Background: An imperative to assess the economic impact of care at the end of life is emerging in response to national policy developments in a number of settings. Current focus on health benefits in economic evaluation may not appropriately capture benefits of interventions at the end of life. No instruments are available for measuring such benefits for economic evaluation of end-of-life care. Aim: To develop a descriptive system for a measure for use in economic evaluation of end-of-life care. Design: An initial phase of in-depth interviews was conducted to develop conceptual attributes for inclusion in a measure; a second phase of semi-structured repeat interviews with a subsample of informants was carried out to clarify and confirm the final set of attributes and to develop meaningful wording for a measure. Setting/participants: In total, 23 older people from three groups across the dying trajectory: older people (1) within the general population, (2) living in residential care and (3) receiving palliative care. Results: Interviews suggested that the important domains to include within this framework from the perspective of those approaching the end-of-life are choice/having a say in decision-making, love and affection/being with people who care, freedom from physical suffering, freedom from emotional suffering, dignity and self-respect, support, and preparation. A full descriptive system comprising seven questions, each representing one attribute, was developed. Conclusion: Economic evaluation should reflect the broader benefits of end-of-life care. Although the supportive care measure developed here requires validation and valuation, it provides a substantial step forward in appropriate economic evaluation of endof-life care.

End-of-life care—what do cancer patients want?

Abstract: Patients with cancer frequently suffer from debilitating physical symptoms and psychological distress, particularly at the end of life. Interventions to help alleviate these problems are often complex and multifactorial. Palliative care services and therapeutic interventions have developed in a variable manner, often with limited evaluation of clinical effectiveness and affordability, resulting in a relatively weak evidence base. The health care provided to patients with advanced-stage cancer does not always correlate with what is known about their preferences for care. In this Review, we discuss the preferences of patients with cancer regarding their end of life care, including the importance of early provision of palliative care, and the central role of advance care planning in meeting patients' preferences. It has been shown that many patients with cancer wish to die at home. We discuss the factors that contribute to the place of death, including environmental factors, disease-specific issues, and the availability of resources. There has been a recent upward trend in the number of patients with cancer who die in their preferred place of care, and important contributors--such as community palliative care, advance care planning, and improvements in palliative care services as a result of robust research studies--are considered.

Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis

Abstract: Background: People with dementia do not always receive good quality end-of-life care, with undertreated pain, aggressive medical interventions and limited access to hospice care being common. Family carers often provide the majority of informal care for people with dementia, therefore may be best placed to comment on quality of care. Aim: We explored what quality end-of-life care for dementia is from the perspective of family carers. Design: A review of qualitative evidence taking a systematic approach using a narrative synthesis with tabulation, textual description of studies and thematic analysis as tools, following the guidelines from the Economic and Social Research Council. Data sources: Keywords and subject headings were searched in MEDLINE, EMBASE, CINAHL, SCIE and PsycINFO for studies from 1990 in April 2012 and updated in May 2013. Reference lists were checked and citation searches undertaken. Results: Eight studies were included. There was an overarching theme of ‘A family’s belief of death and their choice of treatment’. Three further themes were then identified to explain family carers’ beliefs: the relationship with professionals as a core component of care quality; emotional and commitment pressures of caring and finally, family carers’ ability to think about death and dying. Conclusion: It is difficult to define what constitutes high-quality end-of-life care for people with dementia from the perspective of family carers. Their views expressed in the literature appear to demonstrate more variation of preference of care and treatment and their uncertainty of this.