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"What is Palliative Care?": Variability in Content of Palliative Care Informational Web Pages
Abstract
Background and aim:
Americans rely on the Internet for health information, and people are likely to turn to online resources to learn about palliative care as well. The purpose of this study was to analyze online palliative care information pages to evaluate the breadth of their content. We also compared how frequently basic facts about palliative care appeared on the Web pages to expert rankings of the importance of those facts to understanding palliative care.
Design:
Twenty-six pages were identified. Two researchers independently coded each page for content. Palliative care professionals (n = 20) rated the importance of content domains for comparison with content frequency in the Web pages.
Results:
We identified 22 recurring broad concepts about palliative care. Each information page included, on average, 9.2 of these broad concepts (standard deviation [SD] = 3.36, range = 5-15). Similarly, each broad concept was present in an average of 45% of the Web pages (SD = 30.4%, range = 8%-96%). Significant discrepancies emerged between expert ratings of the importance of the broad concepts and the frequency of their appearance in the Web pages (r τ = .25, P > .05).
Conclusion and implications:
This study demonstrates that palliative care information pages available online vary considerably in their content coverage. Furthermore, information that palliative care professionals rate as important for consumers to know is not always included in Web pages. We developed guidelines for information pages for the purpose of educating consumers in a consistent way about palliative care.
... 1,2 Research already led to fields of knowledge deemed relevant to be known by the public that are within the domains of the scope of palliative care, palliative care eligibility, differentiation between hospice and palliative care, timing of palliative care, as well as financing of palliative care. 3 Conceptions of humanity and care and associated values and ethics are equally evident in internal language use, 4,5 in professional communication, and in public relations work of the discipline. 6 People in the public have differing ideas about the objectives and scope of palliative care. ...
Background: Literature reviews reveal poor knowledge and awareness of palliative care in the public. Health literacy deficits impact access to palliative care. Objectives: The aim of this manuscript is to explore the public perception of palliative care in Germany. Design: Triangulated qualitative research design: a snowball-spread online survey and a random pedestrian survey. Setting/Subjects: Citizens in Germany. Results: The pedestrian survey (n = 100) revealed 34% of the participants being not familiar with palliative care. The online survey (n = 994) 5.7% of participants reported to not know what palliative care was. The public's perception of palliative care is mainly medicine oriented, referring to inpatient care for the immediately dying; however, further significant misperceptions were scarce. Conclusions: The public perception shows an indistinct picture of palliative care, and some misconceptions about the objectives and areas of responsibility of the subject, meanwhile, palliative care is known to a majority of people. Understanding partly incomplete pictures of patients and relatives may help to react appropriately in staff-patient interactions and improve public relations.
... The internet and particularly social media were the 'go to' for information, while older more experienced family and friends demonstrated the behaviour to follow. Recent empirical evidence in Europe and the USA demonstrated that information on internet sites is unstandardised and can be based on particular agendas with important omissions relating to core aspects of palliative care [50][51][52]. Analysis of You Tube videos relating to palliative care identified the potential for misinformation to be disseminated [53]. Yet findings from this study suggest the use of established platforms such as the education system and social media can provide not only the means but the impetus for engaging with palliative care. ...
Background
Moving palliative care from a solely clinical focus to a more population based and community orientated approach is the hallmark of a much advocated public health approach to palliative care. Young adults are a vital cohort of the public, yet their understanding of palliative care has not been investigated. This study aimed to explore young adults’ understanding of palliative care and identify factors that influence their engagement.
Methods
A purposive sample of young adults (n = 24) aged 18–29 years were recruited from one UK University. Semi-structured interviews were undertaken face to face or via telephone or Skype between November 2017 and February 2018. Thematic analysis using a framework approach and underpinned by a socioecological perspective was used to analyse the interviews.
Results
Three thematic categories were identified relating to intrapersonal and interpersonal influences, cultural and social influences and organisational and public policy influences. Palliative care was understood as supportive comfort care, delivered in the absence of cure, associated with the end of life and specifically focused on death and dying. Negative attitudes related to the context of care, which represented a static and hopeless situation. Whilst some reported positive attitudes, potential engagement was seen to be governed by a lack of knowledge and protective cultural norms. In terms of demonstrating readiness to engage with palliative care, participants requested clear information and suggested a normalising of palliative care through the education system.
Conclusion
Young adults in this study were ready to find out more about palliative care and identified social media as a platform upon which to engage this population. However, their perception of a society that views palliative care as a subject for those directly affected, creates a barrier to engagement. This study identified the ingredients of a public health message and mediums for disseminating the message. However, findings also suggest that a cultural shift is required to recognise the potential of engaging young adults in health issues that cross the life span, empowering them not only as individuals but as vital members of community and society.
... Palliative care is an increasingly important component of health care provision [1,2] .Although there are many definitions of palliative care [3,4], some with competing conceptual bases, common to many is 'quality of life as a goal of palliative care (and) the inclusion of the family and multidisciplinary practice' [5]. However, these definitional differences carry across into differences in the definition of 'palliative care patients' [6] and information available to patients [7]. More importantly for assessing service planning and access however, is that what 'good palliative care' means in practice also still lacks definitional precision [3]. ...
Background:
Payment models for palliative care vary across nations, with few adopting contemporary payments designs that apply to other parts of the health system.
Aim:
To propose optimal payment arrangements for palliative care.
Approach:
Review of relevant literature on funding mechanisms in health care generally and palliative care in particular.
Results:
Payment models for palliative care should move toward activity-based funding using an agreed classification, be uncapped funding with performance monitoring, and make explicit use of performance metrics and reporting.
Conclusions:
If palliative care is to become a universally accessible service, new approaches to funding, based on the experience of funding reforms in other parts of the health system, need to be adopted.
Negative beliefs and a lack of clarity surrounding the meaning of palliative care have been widely reported as obstacles to its uptake. Information available to the public possibly contributes to this. A descriptive and discourse-theoretical analysis was conducted of information spread online by palliative care policy, advocacy, and practice organizations. Discrepancies were found in the way palliative care was defined in relation to curative, end-of-life, terminal, and supportive care. Beyond these definitional variations, meaning was generated through the representation of palliative care as a culture, connected to total care, compassion, and openness. Tensions arose around the concepts of autonomy, a natural death, and an emphasis on the quality of life away from death and dying. Overall, this study showed that the online information of palliative care is a potential source of confusion and might even contribute to its stigmatization. Insights are provided that may help improve clarity toward the public.
Background:
Early palliative care addresses biopsychosocial needs for people living with HIV in an outpatient setting. We sought to describe patients referred to a palliative care program and compare the medical outcomes of emergency department (ED) visits, hospitalizations, primary care visits, and viral load suppression among patients enrolled in the program, to patients who did not enroll (no-show group).
Setting:
We completed a retrospective cohort study at an urban, academically- affiliated HIV primary care clinic.
Methods:
Data were collected from electronic medical records. Descriptive statistics characterized patient demographics at baseline, comorbidities, and reasons for referral to palliative care. Viral load suppression, rates of ED visits, hospitalizations, primary care visits, and retention in care were compared between the palliative and no-show groups.
Results:
The most common reasons for referral were chronic pain management and medication/appointment adherence. Median percent of viral load measurements suppressed increased over time, but did not differ statistically between groups (Pre: 28.6% and 15.5%, post: 70.8% and 50.0%, palliative and no-show groups respectively). Median rates of ED visits and hospitalizations were low and were not impacted by palliative care. Rates of primary care visit attendance remained stable in the palliative group (4.6/year) but declined in the no-show group (3.5/year), p<0.05. Retention in care improved significantly following the palliative intervention (Palliative: 85.4% to 96.1%, No-show: 94.4% to 82.5%), and at high and low palliative engagement, suggesting a threshold effect of the intervention.
Conclusion:
Outpatient early palliative care is a promising intervention that might impact retention in HIV care.
Background:
Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care.
Aim:
To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed.
Design:
A cross-sectional study of "palliative care" search results.
Setting:
Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched.
Results:
The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention "quality of life" and "relief from symptoms and stress." None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public.
Conclusions:
Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.
Objective:
To identify what laypersons know about palliative care using the Palliative Care Knowledge Scale (PaCKS). A secondary aim was to establish preliminary normative data for the PaCKS.
Methods:
A sample of 301 adults were recruited via Amazon's Mechanical Turk database. Participants were administered the PaCKS along with a demographic questionnaire.
Results:
The mean score on the 13-item PaCKS was 5.25 (standard deviation = 4.77, range: 0-13), the median was 5, and the mode was 0, with a significant proportion of participants selecting "I don't know" for every item. Women scored significantly higher than men, and 45- to 54- and 55- to 64-year-olds scoring highest. The PaCKS was also significantly positively correlated with education.
Conclusion:
Broadly, laypersons lack knowledge about some key aspects of palliative care, though palliative care knowledge is highly variable across individuals and some groups. Targeted educational interventions are essential to improve knowledge of palliative care in order to increase access to this type of life-enhancing, supportive service.
Objective
The purpose of this study was to develop a reliable and valid scale that broadly measures knowledge about palliative care among non-healthcare professionals.
Method
An initial item pool of 38 true/false questions was developed based on extensive qualitative and quantitative pilot research. The preliminary items were tested with a community sample of 614 adults aged 18–89 years as well as 30 palliative care professionals. The factor structure, reliability, stability, internal consistency, and validity of the 13-item Palliative Care Knowledge Scale (PaCKS) were assessed.
Results
The results of our study indicate that the PaCKS meets or exceeds the standards for psychometric scale development.
Significance of results
Prior to this study, there were no psychometrically evaluated scales with which to assess knowledge of palliative care. Our study developed the PaCKS, which is valid for assessing knowledge about palliative services in the general population. With the successful development of this instrument, new research exploring how knowledge about palliative care influences access and utilization of the service is possible. Prior research in palliative care access and utilization has not assessed knowledge of palliative care, though many studies have suggested that knowledge deficits contribute to underutilization of these services. Creating a scale that measures knowledge about palliative care is a critical first step toward understanding and combating potential barriers to access and utilization of this life-improving service.
Objectives:
In Germany since 2007 patients with advanced life-limiting diseases are eligible for Specialized Outpatient Palliative Care (SOPC). To provide this service, SOPC teams have been established as a new facility in the health care system. The objective of this study was to evaluate the effectiveness of one of the first SOPC teams based at the Munich University Hospital.
Methods:
All patients treated by the SOPC team and their primary caregivers were eligible for this prospective nonrandomized study. The main topics of the surveys before and after involvement of the SOPC team were: for patients, the assessment of symptom burden (Minimal Documentation System for Palliative Medicine, MIDOS), satisfaction with quality of palliative care (Palliative Outcome Scale, POS), and quality of life (McGill Quality of Life Questionnaire, MQOL); for caregivers, burden of care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and quality of life (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F).
Results:
Of 100 patients treated between April and November 2011, 60 were included in the study (median age 67.5 years, 55% male, 87% oncological diseases). In 23 of 60 patients, only caregivers could be interviewed. The median interval between the first and second interview was 2.5 weeks. Quality of life increased significantly in patients (p<0.05) and caregivers (p<0.001), as did the patients' perception of quality of palliative care (POS, p<0.001), while the caregivers' psychological distress and burden of care significantly decreased (HADS, p<0.001; HPS, p<0.001).
Conclusions:
The involvement of an SOPC team leads to a significant improvement in the quality of life of patients and caregivers and can lower the burden of home care for the caregivers of severely ill patients.
One of the most important steps in the qualitative research process is analysis of data. The purpose of this article is to provide elements for understanding multiple types of qualitative data analysis techniques available and the importance of utilizing more than one type of analysis, thus utilizing data analysis triangulation, in order to understand phenomenon more fully for school psychology research and beyond. The authors describe seven qualitative analysis tools: methods of constant comparison, keywords-in-context, word count, classical content analysis, domain analysis, taxonomic analysis, and componential analysis. Then, the authors outline when to use each type of analysis. In so doing, the authors use real qualitative data to help distinguish the various types of analyses. Furthermore, flowcharts and tables are provided to help delineate when to choose each type of analysis. Finally, the role of computer-assisted software in the qualitative data-analytic process is discussed. As such, use of the analyses outlined in this article should help to promote rigor in qualitative research. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
• Despite increasing interest in consumer awareness and participation in health care service delivery, there has been little exploration of consumer views in relation to services for people with type I diabetes.
• The purpose of this qualitative exploratory study was to identify strategies people with type I diabetes used to access health services and the barriers they perceived in accessing the services they needed.
• Data gathered in semi‐structured interviews revealed that consumers experience significant barriers when navigating the health care system.
• Three dominant themes were identified. They relate to access to specialist medical skill, to the transition from teenager to young adult and to pre‐pregnancy and obstetric care.
• Directions for change in service delivery and policy development are discussed.
Medical decision making has long been in focus, but little is known of the preferences and conditions for elderly people with co-morbidities to participate in medical decision making. The main objective of the present study was to investigate the preferred and the actual degree of control, i.e. the role elderly people with co-morbidities wish to assume and actually had with regard to information and participation in medical decision making during their last stay in hospital.This study was a cross-sectional survey including three Swedish hospitals with acute admittance. The participants were patients aged 75 years and above with three or more diagnoses according to the International Classification of Diseases (ICD-10) and three or more hospitalisations during the last year.
We used a questionnaire combined with a telephone interview, using the Control Preference Scale to measure each participant's preferred and actual role in medical decision making during their last stay in hospital. Additional questions were asked about barriers to participation in decision making and preferred information seeking role. The results are presented with descriptive statistics with kappa weights.
Of the 297 elderly patients identified, 52.5% responded (n = 156, 46.5% male). Mean age was 83.1 years. Of the respondents, 42 of 153 patients said that they were not asked for their opinion (i.e. no shared decision making). Among the other 111 patients, 49 had their exact preferred level of participation, 37 had less participation than they would have preferred, and 23 had more responsibility than they would have preferred. Kappa statistics showed a moderate agreement between preferred and actual role (κw = 0.57; 95% CI: 0.45-0.69). Most patients wanted to be given more information without having to ask. There was no correlation between age, gender, or education and preferred role. 35% of the patients agreed that they experienced some of the various barriers to decision making that they were asked about: 1) the severity of their illness, 2) doctors with different treatment strategies, 3) difficulty understanding the medical information, and 4) difficulty understanding doctors who did not speak the patient's own language.
Physicians are not fully responsive to patient preferences regarding either the degree of communication or the patient's participation in decision making. Barriers to participation can be a problem, and should be taken into account more often when dealing with hospitalised elderly people.
Patients facing serious or life-threatening illnesses account for a disproportionately large share of Medicaid spending. We examined 2004-07 data to determine the effect on hospital costs of palliative care team consultations for patients enrolled in Medicaid at four New York State hospitals. On average, patients who received palliative care incurred 4,098 in hospital costs per admission for patients discharged alive, and 84 million to $252 million annually (assuming that 2 percent and 6 percent of Medicaid patients discharged from the hospital received palliative care, respectively), if every hospital with 150 or more beds had a fully operational palliative care consultation team.
To assess the reliability and accuracy of medical advice, over a range of types of websites, found using the Google search engine, thus simulating a patient's experience.
Advice was sought for five common paediatric questions using the Google search engine. The first 100 results of each question were classified as either being consistent or inconsistent with current recommendations or as 'no answer given'. Record of the type of site and its visibility was noted.
39% of the 500 sites searched gave correct information; 11% were incorrect and 49% failed to answer the question. Where an answer was available, 78% of sites gave the correct information. The accuracy of information varied depending on the topic and ranged from 51% (mumps, measles and rubella and autism) to 100% (breast feeding with mastitis/the sleeping position of a baby). Governmental sites gave uniformly accurate advice. News sites gave correct advice in 55% of cases. No sponsored sites were encountered that gave the correct advice.
The authors have shown that the advice on the internet is very variable. Patients are known to use the internet for their own research and as such the authors encourage healthcare workers to recommend government or NHS websites.
This project explored end-of-life care preferences and barriers among low-income, urban African Americans and Latino/Hispanic Americans (Latinos) to uncover factors that may influence hospice utilization.
Focus groups were conducted separately for African Americans (4 groups, n = 26) and Latinos (4 groups, n = 27). Transcripts were coded and analyzed using consensus and triangulation to identify primary themes.
Four preference themes and four barriers were identified. Results were largely similar across the two groups. Both preferred having families provide care for loved ones but expressed desire to reduce caretaker burden. Groups emphasized spirituality as the primary means of coping and valued the holistic well-being of the patient and family. Barriers reported were closely tied to access to care. Participants reported low hospice utilization because of lack of awareness of hospice and the prohibitive cost of health care. Latinos were more likely to report language barriers, while African Americans were more likely to report mistrust of the system.
African Americans and Latinos in this study were highly receptive to end-of-life care that would provide relief for patients and caregivers and emphasize spirituality and family consensus. Improving awareness of hospice services would likely increase utilization.
Palliative care programs are becoming increasingly common in U.S. hospitals.
To quantify the growth of hospital based palliative care programs from 2000-2003 and identify hospital characteristics associated with the development of a palliative care program.
Data were obtained from the 2001-2004 American Hospital Association Annual Surveys which covered calendar years 2000-2003. We identified all programs that self-reported the presence of a hospital-owned palliative care program and acute medical and surgical beds. Multivariate logistic regression was used to identify characteristics significantly associated with the presence of a palliative care program in the 2003 survey data.
Overall, the number of programs increased linearly from 632 (15% of hospitals) in 2000 to 1027 (25% of hospitals) in 2003. Significant predictors associated with an increased likelihood of having a palliative care program included greater numbers of hospital beds and critical care beds, geographic region, and being an academic medical center. Compared to notfor- profit hospitals, VA hospitals were significantly more likely to have a palliative care program and city, county or state and for-profit hospitals were significantly less likely to have a program. Hospitals operated by the Catholic Church, and hospitals that owned their own hospice program were significantly more likely to have a palliative care program than non- Catholic Church-operated hospitals and hospitals without hospice programs respectively.
Our data suggest that although growth in palliative care programs has occurred throughout the nation's hospitals, larger hospitals, academic medical centers, not-for-profit hospitals, and VA hospitals are significantly more likely to develop a program compared to other hospitals.
The abstract for this document is available on CSA Illumina.To view the Abstract, click the Abstract button above the document title.
Currently, the general approaches to the analysis of qualitative data are these:1.) If the analyst wishes to convert qualitative data into crudely quantifiable form so that he can provisionally test a hypothesis, he codes the data first and then analyzes it. He makes an effort to code “all relevant data [that] can be brought to bear on a point,” and then systematically assembles, assesses and analyzes these data in a fashion that will “constitute proof for a given proposition.”i2.) If the analyst wishes only to generate theoretical ideasnew categories and their properties, hypotheses and interrelated hypotheses- he cannot be confined to the practice of coding first and then analyzing the data since, in generating theory, he is constantly redesigning and reintegrating his theoretical notions as he reviews his material.ii Analysis with his purpose, but the explicit coding itself often seems an unnecessary, burdensome task. As a result, the analyst merely inspects his data for new properties of his theoretical categories, and writes memos on these properties.We wish to suggest a third approach
To provide a detailed description of the recommendations of a Palliative Care Service (PCS) and to describe the impact of these recommendations on the care of terminally ill patients in an academic medical center, we describe data from all consecutive patients referred by their attending physicians to the PCS of an academic teaching hospital over a 15-month period. All patients were seen within 24 hours of consultation request. Data were collected prospectively on the day of discharge or death. Attention was focused on six recommendations and their implementation: 1) discussion about prognosis and goals of care; 2) pursuing documentation of advance directives; 3) discussion about foregoing specific treatments and/or diagnostic interventions; 4) family and patient support; 5) discharge planning; and 6) symptom management. Over a 15-month period, we collected data on 325 patients. The most frequent diagnoses were cancer, dementia, and HIV disease. The patients were followed for a mean of 7.6 days. The average number of recommendations was 4.2 per patient and 91% of the recommendations were implemented (3.8 per patient). Recommendations increased to 5.3 per patient and the implementation rate increased to 97% (5.1 per patient) for the 44 patients transferred to the Palliative Care Unit (PCU). PCS consultations result in multiple recommendations with a very high implementation rate. The number of recommendations and the high implementation rate suggest a strong need for palliative care services within acute care hospitals.
Background:
Palliative care consultations teams (PCCTs) promote comprehensive health but only if the PCCT can influence actual care. The purpose of this study is to document the types of recommendations made by a PCCT, determine the rates at which recommendations are implemented, and identify the factors related to implementation.
Results:
The mean number of recommendations per patient was 1.44 (standard deviation = 1.81), and 57% of the recommendations were implemented. Discharge and goals of care recommendations were significantly more likely to be implemented than recommendations for pain, symptom management, and consultation of other services.
Conclusions:
Although PCCTs may have suggestions about how to guide care, many of those recommendations are not implemented. Future research is needed to understand how to maximize the impact of PCCTs.
Background:
Palliative care (PC) is a critical component of comprehensive cancer care. Previous studies on PC access have mostly examined the timing of PC referral. The proportion of patients who actually receive PC is unclear. We determined the proportion of cancer patients who received PC at our comprehensive cancer center and the predictors of PC referral.
Methods:
We reviewed the charts of consecutive patients with advanced cancer from the Houston region seen at MD Anderson Cancer Center who died between September 2009 and February 2010. We compared patients who received PC services with those who did not receive PC services before death.
Results:
In total, 366 of 816 (45%) decedents had a PC consultation. The median interval between PC consultation and death was 1.4 months (interquartile range, 0.5-4.2 months) and the median number of medical team encounters before PC was 20 (interquartile range, 6-45). On multivariate analysis, older age, being married, and specific cancer types (gynecologic, lung, and head and neck) were significantly associated with a PC referral. Patients with hematologic malignancies had significantly fewer PC referrals (33%), the longest interval between an advanced cancer diagnosis and PC consultation (median, 16 months), the shortest interval between PC consultation and death (median, 0.4 months), and one of the largest numbers of medical team encounters (median, 38) before PC.
Conclusions:
We found that a majority of cancer patients at our cancer center did not access PC before they died. PC referral occurs late in the disease process with many missed opportunities for referral.
The most important attribute of patient-centered care is the active engagement of patients when fateful health care decisions must be made — when they arrive at a crossroads of medical options, where diverging paths have different and important consequences.
Patients with advanced cancer experience a complex web of problems, all of which interact. Specialist palliative care services have developed to meet these needs, but their effectiveness should be considered. We sought to determine whether specialist palliative care teams achieve their aims and improve outcomes for patients with advanced cancer and their caregivers, in terms of improving symptoms and quality of life and/or reducing the emotional concerns of family caregivers. We conducted a systematic review, searching standard databases augmented by reference lists of earlier reviews. The review focused on specialist (ie, with trained and dedicated professionals) palliative care in the home, hospital, or designated inpatient settings for patients with cancer. Outcomes were pain, symptoms, quality of life, use of hospital services, and anxiety. Studies were excluded if they did not test specialist palliative care services. We identified 8 randomized controlled trials and 32 observational or quasi-experimental studies. Overall, the evidence demonstrated that home, hospital, and inpatient specialist palliative care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, and reduced hospital admissions. The results suggest that specialist palliative care should be part of care for cancer patients. Although the appraisal of evidence found improvements across domains, there is a need to understand better the effects of different models of palliative care and to use standardized outcome measurement.
To provide a detailed description of the recommendations of a Palliative Care Service (PCS) and to describe the impact of these recommendations on the care of terminally ill patients in an academic medical center, we describe data from all consecutive patients referred by their attending physicians to the PCS of an academic teaching hospital over a 15-month period. All patients were seen within 24 hours of consultation request. Data were collected prospectively on the day of discharge or death. Attention was focused on six recommendations and their implementation: 1) discussion about prognosis and goals of care; 2) pursuing documentation of advance directives; 3) discussion about foregoing specific treatments and/or diagnostic interventions; 4) family and patient support; 5) discharge planning; and 6) symptom management. Over a 15-month period, we collected data on 325 patients. The most frequent diagnoses were cancer, dementia, and HIV disease. The patients were followed for a mean of 7.6 days. The average number of recommendations was 4.2 per patient and 91% of the recommendations were implemented (3.8 per patient). Recommendations increased to 5.3 per patient and the implementation rate increased to 97% (5.1 per patient) for the 44 patients transferred to the Palliative Care Unit (PCU). PCS consultations result in multiple recommendations with a very high implementation rate. The number of recommendations and the high implementation rate suggest a strong need for palliative care services within acute care hospitals.
Palliative care provision varies widely, and the effectiveness of palliative and hospice care teams (PCHCT) is unproven. To determine the effect of PCHCT, 10 electronic databases (to 2000), 4 relevant journals, associated reference lists, and the grey literature were searched. All PCHCT evaluations were included. Anecdotal and case reports were excluded. Forty-four studies evaluated PCHCT provision. Teams were home care (22), hospital-based (9), combined home/hospital care (4), inpatient units (3), and integrated teams (6). Studies were mostly Grade II or III quality. Funnel plots indicated slight publication bias. Meta-regression (26 studies) found slight positive effect, of approximately 0.1, of PCHCTs on patient outcomes, independent of team make-up, patient diagnosis, country, or study design. Meta-analysis (19 studies) demonstrated small benefit on patients' pain (odds ratio [OR]: 0.38, 95% confidence interval [CI]: 0.23-0.64), other symptoms (OR: 0.51, CI: 0.30-0.88), and a non-significant trend towards benefits for satisfaction, and therapeutic interventions. Data regarding home deaths were equivocal. Meta-synthesis (all studies) found wide variations in the type of service delivered by each team; there was no discernible difference in outcomes between city, urban, and rural areas. Evidence of benefit was strongest for home care. Only one study provided full economic cost-benefit evaluation. This is the first study to quantitatively demonstrate benefit from PCHCTs. Such comparisons were limited by the quality of the research.
Disseminating health and medical information on the Internet can improve knowledge transfer from health professionals to the population, and help individuals to maintain and improve their health. There are currently several medical information websites that directly target the general population with the aim of providing information about health problems, self-care and prevention. However, this new technology also hides several shortcomings, such as: (i) uneven quality of medical information available on the Internet; (ii) difficulties in finding, understanding and using this information; (iii) lack of access for the unconnected population; and (iv) the potential for harm and risks of over-consumption. To be able to overcome these dangers, it is important that public health practitioners and health professionals be involved in the design, dissemination and evaluation of Web-based health and medical information.
We explored a diverse sample of family medicine patients' use of the internet for health information. Primary objectives were to determine the extent of access to the Internet, and among those with access, the types of health information sought; how they search for that information; and how they assess the accuracy of the information. We also surveyed the physicians' perceptions of their patients' use of the Internet for health information. Of 1289 patients participating, 65% reported access to the internet; age, sex, race, education, and income were each significantly associated with internet access. A total of 74% of those with access had used the Internet to find health information for themselves or family members. Disease-specific information was most frequently sought, followed by medication information, and then information about nutrition and exercise. Patients determine website accuracy by the endorsement of the site by a government agency or a professional organization, their own perception of reliability of the website source, and the understandability of the information. Almost 90% attempted to verify the information they obtained. A majority had discussed website information with their physicians. The physicians (n = 92) underestimate the proportion of their patients who used the Internet for health information. A total of 36% of physicians said at least one patient per week brought in Internet health information, and 63% said they had suggested a specific website to their patients. Physicians need critical appraisal skills to determine whether information found by a patient is relevant to that patient's condition and is based on the best available evidence. In addition, physicians directing patients to websites for health information must be confident that the site is maintained and updated by a reliable and credible source.
Palliative care is not accessed by all those who can benefit from it. Survey aim: To explore awareness of palliative care and related services among UK oncology out-patients, and to analyse the relationship between demographic characteristics and knowledge.
Cross-sectional interview-based survey. Analysis comprised univariate and multiple logistic regression. Participants and settings: Oncology out-patients receiving curative treatments at two district general hospitals in north-west London between December 2004 and April 2005.
A total of 252 (94%) eligible clinic patients were interviewed. Only 47 (18.7%) patients recognised the term 'palliative care', but 135 (67.8%) understood the role of the hospice, and 164 (66.7%) understood the role of Macmillan nurses. Age-adjusted multiple logistic regression showed that recognizing the term 'palliative care' was more likely among the most socially and materially affluent patients than those who were the poorest (OR: 8.4, CI: 2.17-31.01, p =0.002). Understanding the role of Macmillan nurses was also more likely among the most socially and materially affluent patients compared with the poorest patients (OR: 7.0, CI: 2.41-18.52, p <0.0001), and was independently less likely among patients from black and minority ethnic groups than those who were classified as being white British (OR=0.5, CI:0.25-0.96, p =0.04).
Awareness of palliative care and related services was low among black and minority ethnic groups, and the least affluent.
Palliative care consultation is the most common model of hospital-based services in the United States, but few studies examine the impact of this model. In a prospective study, we describe the impact of palliative care consultation on symptoms, treatment, and hospital costs. Patients receiving interdisciplinary palliative care consultations from 2002 to 2004 were approached for enrollment; 304 of 395 (77%) patients participated. Measures included diagnosis, treatment decisions, and symptom scores. To test impact on costs, a one-year subset of cases with lengths of stay >4 days (n=104) was compared to all available controls (n=1,813) matched on the 3Mtrade mark All Patients Refined Diagnosis Related Group, Version 20, and mortality risk scores. Half of the patients were younger than 65 years, 28% were African American, and 61% had cancer. Median Palliative Performance score was 20 (range, 10-100). Recommendations were implemented in 88% of cases; new "do not resuscitate/do not intubate" orders were written for 34% of patients, new comfort care orders for 44%, and 27% were referred for hospice care. Symptom scores improved from Day 1 to Day 3, with greatest improvement in pain (2.6-1.4, P<0.001). Compared to matched controls without palliative care consultation, palliative care cases had lower cost per day (1004, P=0.03). Per diem variable costs were 10.7% less for all palliative care cases and 20.5% less for those with >50% hospital days with palliative care consultation. Palliative care consultation is followed by decisions to forego costly treatment and improved symptom scores, and earlier palliative care intervention results in greater cost-savings.
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