Objectives: A dementia nurse specialist (DNS) is expected to improve the quality of care and support to people with dementia nearing, and at, the end of life (EoL) by facilitating some key features of care. The aim of this study was to estimate willingness-to-pay (WTP) values from the general public perspective, for the different levels of support that the DNS can provide.
Methods: Contingent valuation methods were used to elicit the maximum WTP for scenarios describing different types of support provided by the DNS for EoL care in dementia. In a general population online survey, 1002 participants aged 18 years or more sampled from the United Kingdom provided valuations. Five scenarios were valued with mean WTP value calculated for each scenario along with the relationship between mean WTP and participant characteristics.
Results: The mean WTP varied across scenarios with higher values for the scenarios offering more features. Participants with some experience of dementia were willing to pay more compared with those with no experience. WTP values were higher for high-income groups compared with the lowest income level (P < .05). There was no evidence to suggest that respondent characteristics such as age, gender, family size, health utility or education status influenced the WTP values.
Conclusion: The general population values the anticipated improvement in dementia care provided by a DNS. This study will help inform judgements on interventions to improve the quality of EoL care.
Euthanasia or assisted dying (EAD) remains a highly contentious issue internationally. Although polls report that a majority New Zealanders support EAD, there are concerns about the framing of the polling questions, and that those responding to the questions do not know enough about the situations described, the options available and the potential implications of EAD policy. One way to address these concerns is through a citizens' jury, which is a method of learning how a group of people view an issue following informed deliberation. This citizens' jury was conducted to learn whether a group of 15 New Zealanders thought the law should be changed to allow some form of EAD and the reasons for their view, having been informed about the issue, heard arguments for and against, and having deliberated together. The jury met for two and a half days. They did not reach a consensus, but become polarized in their positions, with several changing their positions to either strong opposition or strong support. The reasons why people support or oppose EAD were not reducible to particular principles or arguments, but reflected an integrated assessment of a range of considerations, informed by personal priorities and experiences. These results suggest that views on EAD may change in response to informed deliberation that the EAD debate involves a range of value judgments and is not likely to be resolved through deliberation alone. These results may inform international debate on EAD policy.
Background: Palliative care is predominantly accessed late in the course of an illness, despite evidence to suggest the benefits of early engagement. Strategies are required to reduce the barriers to the delivery of palliative care.
Aim: To describe community understandings of and attitudes to palliative care and explore characteristics significantly associated with favourable attitudes towards palliative care.
Design: Cross-sectional survey data were collected including several sociodemographic characteristics, knowledge of palliative care and attitudes to palliative care. Correlational analyses identified factors related to positive attitudes to palliative care. Those of significance (p <=0.01) were examined using a multiple regression model to determine their predictive value.
Setting/participants: A community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups.
Results: A total of 421 participants (75% female, mean age: 51 ± 15.1) reported a median of at least three misperceptions of palliative care. Older age, previously undertaking a caregiving role, knowing someone who had received palliative care and reporting more accurate knowledge of palliative care significantly predicted favourable attitudes to palliative care (adjusted R2 = 0.24, F(8, 333) = 13.2, p < 0.001). Other factors typically associated with health literacy such as tertiary education, working at a medical facility and speaking a language other than English at home were not predictive.
Conclusion: Gaps in knowledge about palliative care exist in community, which may limit citizen’s potential access to quality care in the event of serious illness. These results point to a role for public education programmes, which may, in turn, also shift attitudes to palliative care.
Objective: Acceptance of palliative care (PC) in the USA has increased in recent decades with the growing number of recommendations for adoption from professional organisations. However, there are prevalent public misperceptions of PC that may prevent broader utilisation. This study seeks to identify the primary sources for PC information, which may help identify sources of misperception and improve PC messaging.
Methods: We analysed the 2018 Health Information National Trends Survey (HINTS), a representative survey of USA population knowledge regarding cancer-related information. This is the first iteration to include questions on PC. Prevalence of preferred PC information sources was estimated; multivariable logistic regression invoking stepwise variable selection was used to determine associations with information-seeking behaviour.
Results Our study cohort consisted of 1127 American adults who were familiar with PC. Overall, 59.3% and 34.0% relied primarily on healthcare providers and internet or printed media, respectively. In stepwise regression models of seeking information from healthcare providers, predictors and their relative contributions to the multivariable model were higher education attainment (58.7%), age =60 years (21.5%) and female sex (15.0%). Higher income was the most robust predictor (35.1%) of reliance on internet and printed media for information, followed by being currently married (26.2%).
Conclusions Overall, American adults rely on healthcare providers and media for PC information, with significant sociodemographic differences in information-seeking behaviour. These findings may be used to inform strategies to promote accurate PC awareness.
BACKGROUND: The field of palliative care (PC) is growing as the world population ages and burden of chronic diseases increases. Thus, it is important that the general public is knowledgeable about PC and the benefits PC provides.
OBJECTIVE: The aim of this study is to describe the public's knowledge, awareness, and perceptions of PC and determine whether these have changed over time.
METHODS: A scoping literature review was conducted from 1968 to May 2019 using PubMed, EMBASE, and MEDLINE databases.
RESULTS: Thirteen studies met inclusion criteria that originated from the United States, Canada, Scotland, Italy, New Zealand, Ireland, United Kingdom, Korea, and Sweden between years 2003 and 2019. Participants were adults and mostly younger than 64 years, women, and Caucasian. The majority of studies reported the public having poor knowledge (7/9 articles) and awareness (4/6 articles) of PC over the past 16 years. Top characteristics associated with increased levels of knowledge and/or awareness of PC included women (6/8 articles), age 40+ (6/8 articles), experience with a close friend and/or relative requiring PC (4/8 articles), and working in health-care and/or PC (4/8 articles). The most common perceptions of PC were associated with patients who have terminal illnesses and end-of-life care. Participants commonly received information about PC from the media, having a close friend or relative requiring PC, and working in a health-care setting.
CONCLUSIONS: The public has poor knowledge and awareness about PC and several misperceptions exist. These findings have remained constant over time despite growth in the field of PC, which highlights the strong need for focused educational interventions.
Some end-of-life aspects have become a significant political and social issue such as elderly care and euthanasia. But hardly anything is known about how the general public in Germany thinks about death and dying more generally. Therefore, we conducted a representative online survey (N = 997) regarding 21 end-of-life aspects. Differences between subgroups were analyzed by conducting analyses of variance and Tukey honestly significance difference post hoc tests and by performing t tests. The findings revealed that the general public is open to engaging with topics of death, dying, and grief and that death education might even be promoted for children. Most participants appraised dealing with the finitude of life as part of a good life, but few have contemplated death and dying themselves so far. Attitudes and perceptions were related to age, subjective health, religious denomination, and gender. The survey provides useful implications for community palliative care, death education, and communication with dying people.
BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.
METHODS: An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.
RESULTS: One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant's life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant's ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.
CONCLUSION: Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents' decisions. These findings may be useful when constructing guidelines for clinical practice.
BACKGROUND: When a patient is incapable of making medical decisions for him- or herself, a substitute decision-maker makes choices according to the patient's previously expressed wishes, values and beliefs; however, little is known about public readiness to act as a substitute decision-maker in Canada. Our primary objective was to measure public self-reported preparedness to act as a substitute decision-maker, and explore the attitudes, barriers and enablers associated with preparedness.
METHODS: From November 2017 to June 2018, we conducted a mixed-methods street intercept survey at 12 pedestrian areas in Ottawa, Ontario. We used descriptive statistics and logistic regression analysis to assess predictors of perceived preparedness to be a substitute decision-maker and determine support for high school education. We analyzed qualitative interview questions using inductive thematic analysis.
RESULTS: Of the 626 eligible respondents, 196 refused to participate, leaving 430 participants (response rate 68.7%). A total of 404 surveys (94.0%) were fully complete with no missing data. The respondents were mostly female (243 [56.5%]) and residents of Ontario (364 [84.6%]). The average age was 33.9 years. Although 314 respondents (73.0%) felt prepared to be a substitute decision-maker, 194 (45.1%) reported never having had meaningful conversations with loved ones to understand their wishes in the event of critical illness. A total of 293 participants (68.1%) identified important barriers to feeling prepared. Most respondents (309 [71.9%]) agreed that high school students should learn about being a substitute decision-maker, citing age appropriateness, potential societal benefit and improved decision-making, while cautioning the need to respect different maturity levels, cultures and experiences.
INTERPRETATION: the lack of conversation between loved ones reveals a gap between perceived and actual preparedness to be a substitute decision-maker for a loved one with a critical illness. The overall acceptability of high school education warrants further exploration.
BACKGROUND: Although euthanasia and assisted suicide (EAS) in people with psychiatric disorders is relatively rare, the increasing incidence of EAS requests has given rise to public and political debate. This study aimed to explore support of the public and physicians for euthanasia and assisted suicide in people with psychiatric disorders and examine factors associated with acceptance and conceivability of performing EAS in these patients.
METHODS: A survey was distributed amongst a random sample of Dutch 2641 citizens (response 75%) and 3000 physicians (response 52%). Acceptance and conceivability of performing EAS, demographics, health status and professional characteristics were measured. Multivariable logistic regression analyses were performed.
RESULTS: Of the general public 53% were of the opinion that people with psychiatric disorders should be eligible for EAS, 15% was opposed to this, and 32% remained neutral. Higher educational level, Dutch ethnicity, and higher urbanization level were associated with higher acceptability of EAS whilst a religious life stance and good health were associated with lower acceptability. The percentage of physicians who considered performing EAS in people with psychiatric disorders conceivable ranged between 20% amongst medical specialists and 47% amongst general practitioners. Having received EAS requests from psychiatric patients before was associated with considering performing EAS conceivable. Being female, religious, medical specialist, or psychiatrist were associated with lower conceivability. The majority (> 65%) of the psychiatrists were of the opinion that it is possible to establish whether a psychiatric patient’s suffering is unbearable and without prospect and whether the request is well-considered.
CONCLUSION: The general public shows more support than opposition as to whether patients suffering from a psychiatric disorder should be eligible for EAS, even though one third of the respondents remained neutral. Physicians' support depends on their specialization; 39% of psychiatrists considered performing EAS in psychiatric patients conceivable. The relatively low conceivability is possibly explained by psychiatric patients often not meeting the eligibility criteria.
In many countries, it has been publicly debated whether health gains for patients at end-of-life (EoL) should be valued higher than health gains for other patients. This has led to a range of stated preference studies examining the justification for an EoL premium on the basis of public preferences - so far with mixed findings. In the present study, we seek to extend this literature. We apply a simple stated preference approach with illustrative binary choices to elicit both individual and social preferences for several types of health gains. More specifically, we investigate whether health gains at EoL, resulting from either an improvement in quality of life (QoL) or life expectancy (LE) are valued differently from similarly sized health gains from preventive treatment and treatment of a temporary disease. Furthermore, we examine whether social preferences are affected by the age of beneficiaries. A web-based survey was conducted in 2015 using a random sample of 1047 members of the general public in Denmark. Overall, we do not find evidence to support an EoL premium compared to other health gains, neither when preferences are elicited from a social nor an individual perspective. Furthermore, our results demonstrate that the type of the health gain received matters to preferences for treatment at EoL with more weight given to gains in QoL than gains in LE. Finally, we find heterogeneity in preferences according to respondent characteristics, perspectives and age of beneficiaries.
Background: The public's attitudes to conscientious objection (CO) are likely to influence political decisions about CO and trust towards healthcare systems and providers. Few studies examine the public's attitudes in an in-depth way.
Methods: Six hypotheses about public attitudes to CO were devised and a questionnaire designed in order to test them. A total of 1617 Norwegian citizens completed the online questionnaire.
Results: Support for toleration of CO was strongest in the case of ritual circumcision of infant boys, lower for assisted dying and abortion. Attitudes to the procedure itself negatively predicted attitudes to CO for the procedure. Respondents were more accepting of CO to performing abortion than of CO to referrals for abortion. There was stronger support for CO as an outcome of local pragmatic arrangements than for CO as a statutory right.
Conclusions: Instead of viewing CO as a "moral safety valve" or minority right which is due also to those with whom we disagree strongly, a portion of the public approaches the issue from the angle of what moral attitudes they deem acceptable to hold. The gap between this approach on the one hand and human rights principles on the other is likely to give rise to tensions in political processes whenever policies for CO are negotiated.
In New Zealand, aiding and abetting a person to commit suicide or euthanasia even with consent is unlawful. The introduction of a third Bill on assisted dying to the House of Representatives following a high-profile court case afforded an opportunity for examining how assisted dying was discussed in the public sphere. In this article, we report on a discourse analysis of a selection of social media to illustrate the ways in which citizens participate in the voluntary euthanasia debate. The volume of social media posts that made up our data set suggests that the legalisation of assisted dying is a highly topical and deeply salient societal issue. Social media postings represent the voices of ordinary citizens who may not participate in formal public consultation processes. Based on our analysis, the assignment of binary conclusions about public opinion is simplistic and fails to adequately represent the intricacies of public debate. Contributors' posts reveal deeply held sociocultural values, as well as tensions about the relationship between citizens and the apparatus of government.
This study investigates Chinese people’s opinions about the diagnosis of grief and the factors associated with their opinions. Among 1041 participants who completed the online survey, over half (56.5%) agreed that grief could be a mental disorder under certain circumstances, such as harm to self or others, functional impairment, and persistent grief. Primary reasons against the diagnosis were that grief is normal and its intensity decreases over time. A small proportion of opponents also expressed concerns about stigmatization resulting from labeling grief as being pathological. Younger, male, and full-time employed adults tended to support diagnosing grief as a mental disorder.
PURPOSE: Understanding the concept of a "good death" is crucial to end-of-life care, but our current understanding of what constitutes a good death is insufficient. Here, we investigated the components of a good death that are important to the general population, cancer patients, their families, and physicians.
METHODS: We conducted a stratified nationwide cross-sectional survey of cancer patients and their families from 12 hospitals, physicians from 12 hospitals and the Korean Medical Association, and the general population, investigating their attitudes toward 10 good-death components.
FINDINGS: Three components-"not be a burden to the family," "presence of family," and "resolve unfinished business"-were considered the most important components by more than 2/3 of each of the three groups, and an additional three components-"freedom from pain," "feel that life was meaningful," and "at peace with God"-were considered important by all but the physicians group. Physicians considered "feel life was meaningful," "presence of family," and "not be a burden to family" as the core components of a good death, with "freedom from pain" as an additional component. "Treatment choices' followed, "finances in order," "mentally aware," and "die at home" were found to be the least important components among all four groups.
CONCLUSION: While families strongly agreed that "presence of family" and "not be a burden to family" were important to a good death, the importance of other factors differed between the groups. Health care providers should attempt to discern each patient's view of a good death.
A source of debate in the health care priority setting literature is whether to weight health gains to account for equity considerations, such as concern for those with very short life expectancy. This paper reviews the empirical evidence in the published social sciences literature relevant to the following research question: do members of the public wish to place greater weight on a unit of health gain for end-of-life patients than on that for other types of patients? An electronic search of the Social Sciences Citation Index for articles published until October 2017 was conducted, with follow-up of references to obtain additional data. Hierarchical criteria were applied to select empirical studies reporting stated preferences relating to hypothetical health care priority setting contexts. Twenty-three studies met the inclusion criteria and were included in the review. Choice exercises were the most common method used to elicit preferences; other approaches included budget allocation, person trade-off and willingness-to-pay. Some studies found that observed preferences regarding end-of-life patients are influenced by information about the patients' ages. Overall, the evidence is mixed, with eight studies that report evidence consistent with a 'premium' for end-of-life treatments and 11 studies that do not. Methodological and design aspects that appear to influence the findings of end-of-life-related preference studies are identified and discussed. The findings of the UK studies have particular relevance for assessing the legitimacy of the National Institute for Health and Care Excellence's policy for appraising life-extending end-of-life treatments.
OBJECTIVE: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population.
DESIGN: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis.
SUBJECTS: The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region.
RESULTS: Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers.
CONCLUSIONS: This survey found limited awareness of palliative care in an adult sample of the Swedish general public = 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.
Preference elicitation studies reporting societal views on the relative value of end-of-life treatments have produced equivocal results. This paper presents an alternative method, combining Q methodology and survey techniques (Q2S) to determine the distribution of 3 viewpoints on the relative value of end-of-life treatments identified in a previous, published, phase of this work. These were Viewpoint 1, "A population perspective: value for money, no special cases"; Viewpoint 2, "Life is precious: valuing life-extension and patient choice"; and Viewpoint 3, "Valuing wider benefits and opportunity cost: the quality of life and death." A Q2S survey of 4,902 respondents across the United Kingdom measured agreement with these viewpoints; 37% most agreed with Viewpoint 1, 49% with Viewpoint 2, and 9% with Viewpoint 3. Regression analysis showed associations of viewpoints with gender, level of education, religion, voting preferences, and satisfaction with the NHS. The Q2S approach provides a promising means to investigate how in-depth views and opinions are represented in the wider population. As demonstrated in this study, there is often more than 1 viewpoint on a topic and methods that seek to estimate that averages may not provide the best guidance for societal decision-making.
Criteria used by the National Institute for Health and Care Excellence (NICE) to assess life-extending, end-of-life (EoL) treatments imply that health gains from such treatments are valued more than other health gains. Despite claims that the policy is supported by societal values, evidence from preference elicitation studies is mixed and in-depth research has shown there are different societal viewpoints. Few studies elicit preferences for policies directly or combine different approaches to understand preferences. Survey questions were designed to investigate support for NICE EoL guidance at national and regional levels. These 'Decision Rule' and 'Treatment Choice' questions were administered to an online sample of 1496 UK respondents in May 2014. The same respondents answered questions designed to elicit their agreement with three viewpoints (previously identified and described) in relation to provision of EoL treatments for terminally ill patients. We report the findings of these choice questions and examine how they relate to each other and respondents' viewpoints. The Decision Rule questions described three policies: DA - a standard 'value for money' test, applied to all health technologies; DB - giving special consideration to all treatments for terminal illnesses; and DC - giving special consideration to specific categories of treatments for terminal illnesses e.g. life extension (as in NICE EoL guidance) or those that improve quality-of-life (QoL). Three Treatment Choices were presented: TA - improving QoL for patients with a non-terminal illness; TB - extending life for EoL patients; and TC - improving QoL at the EoL. DC received most support (45%) with most respondents giving special consideration to EoL only when treatments improved QoL. The most commonly preferred treatment choices were TA (51%) and TC (43%). Overall, this study challenges claims about public support for NICE's EoL guidance and the focus on life extension at EoL and substantiates existing evidence of plurality in societal values.
Lack of knowledge is one of the main reasons for the low rates of completion of Advance Care Planning (ACP). The purpose of this study was to systematically review the existing literature on knowledge regarding Advance Care Planning. A systematic search of the literature was made in CINHAL, AgeLine, PubMed, PsyINFO and SocINDEX, from 1994 till May 2016. We identified 37 articles that satisfied the inclusion criteria: 35 were quantitative, one was qualitative and one used mixed methods. Most of the studies (n=23) were conducted in the United States and participants in most of the studies (n=22) were professionals. A variety of aspects of ACP were examined, regarding subjective and objective knowledge. Seventeen studies found that participants knew some aspects of ACP, but didn’t know others. Inconsistencies were found in the types of instruments and the number of items used to assess knowledge. More effort should be invested in increasing knowledge regarding ACP among professionals and lay people. Developing validated tools to measure objective and subjective knowledge in both populations might be a first step in this direction.