PURPOSE: To examine the effect of education on nursing personnel's knowledge and attitudes regarding the use of hand massage, breathing techniques, and essential oils with hospice and palliative care patients.
BACKGROUND: Unrelieved, end of life pain is common among hospitalized patients on hospice and palliative care units. Integrative care techniques such as hand massage, breathing techniques, and essential oils can be available to use with these individuals. Nursing personnel are often unaware of other techniques that are not a traditional pharmacology approach to pain.
METHODS: A quasi-experiment was conducted to evaluate the effect of an educational intervention on nursing personnel's knowledge and attitudes regarding the use of three integrative care techniques (hand massage, breathing techniques, and essential oils) with hospice and palliative care patients in an acute care setting. Data on knowledge and attitudes were collected pre- and postintervention.
RESULTS: Following the intervention, improvements in nursing personnel's attitudes and knowledge toward the use of the three techniques were found.
CONCLUSION: Results of this study suggest that education of nursing personnel may positively influence knowledge and attitudes toward providing hand massage, breathing techniques, and essential oil for end of life patients.
Background: End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians’ profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in Neonatal Intensive Care Units and correlate them with self-reported practices of end-of-life decisions and with their background data.
Methods: A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units in Greece. One hundred and sixty two out of 260 eligible physicians answered anonymously the questionnaire (response rate 66%). Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians’ attitude and views ranging from value of life to quality of life approach (scale 1–5).
Results: Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score (indicative of value of quality-of-life) were more likely to limit, while those with a low score (indicative of value of sanctity-of-life) were more likely for continuation of intensive care. Physicians’ educational level (p:0.097), involvement in research (p:0.093), religion (p:0.024) and position on the existing legal framework (p < 0.001) were factors that affected the attitude score.
Conclusions: Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform.
CONTEXT: Current studies suggested that cultural and religious factors, as well as law and policy, may have impeded the advancement of palliative care in the Middle East. Little is known about healthcare providers' perceptions of palliative care and the barriers to its development in the Gulf Cooperation Council (GCC)
OBJECTIVES: To understand healthcare professionals' attitudes and beliefs regarding palliative care and to highlight current practice barriers in Bahrain.
METHODS: Semistructured interviews with 16 healthcare providers (physicians and nurses) were conducted. Thematic analysis was then performed after interviews were transcribed verbatim.
RESULTS: Healthcare professionals perceived palliative care as a service only delivered to patients at the end-of-life. Palliative care was only offered to patients who have been diagnosed with cancer and had exhausted all curative treatments. Do-Not-Resuscitate orders and Code Status discussions are not currently practiced. Palliative care decisions are usually decided by patients' families. Middle Eastern culture, healthcare law and policy, conservative interpretations of Islam and a lack of professional expertise were identified as barriers.
CONCLUSION: This study unveiled the perceptions of palliative care among healthcare professionals in a GCC country. Six major barriers that hindered palliative care practice were identified. Future healthcare policy in the region needs to address these barriers within the current healthcare system while taking culture, religion, and social factors into consideration.
BACKGROUND: The low completion rate of advance directives (ADs) has received attention in Japan and the United States, as policy makers and health care professionals face aging populations with multiple comorbidities. Among the barriers to AD planning, cultural values and attitudes appear to be particularly influential. A comparison of culturally distinct societies provides a deeper understanding of these barriers. Through such an approach, this study identifies strategies for increasing AD planning among late-middle-age Japanese and US individuals.
METHODS: After giving informed consent for the Institutional Review Board-approved study, Japanese and US respondents (45-65 y; 50% female) without ADs completed a language-appropriate online survey. Participants were asked to review a decision aid as part of a scenario-based physician consultation regarding artificial nutrition and hydration (ANH). Hypotheses were analyzed using multigroup structural equation modeling.
RESULTS: Important similarities were identified across the 2 groups. After reviewing the decision aid, both samples strongly preferred "no ANH." Respondents who strongly valued either self-reliance or interpersonal relationships experienced greater preparedness for AD planning. In both countries, greater decision preparedness and positive death attitude predicted greater confidence to discuss care options with a provider. Finally, cultural values predicted preference for family participation: respondents with a strong interdependent self-concept desired more family involvement, whereas high independents preferred less.
CONCLUSIONS: Findings indicate the importance of documenting care preferences and accounting for individual differences. To increase AD adoption, providers should identify patient segments likely to benefit most from the interventions. Targeting individuals in both countries who value self-reliance and interpersonal relationships appears to be a good place to begin. Such individuals can be identified clinically through administration of validated measures used in this study.
Many international studies have shown that the process of palliative sedation in an end-of-life context can be an adverse, even emotionally distressing experience for nurses. However, to the best of our knowledge, the experience of nurses working in palliative care in Switzerland has never been explored. The purpose of our study was, therefore, to understand and describe nurses' experience with the process of palliative sedation in line with the Swiss guidelines developed in 2005. We opted for an exploratory qualitative monocentric study using comprehensive individual interviews to achieve this objective. A total of 10 nurses were approached, and nine agreed to take part. After the interviews were transcribed, eight were ultimately included in the analysis. This analysis shows that nurses' attitudes toward the process of palliative sedation tended to be hesitant, resistant, or confident and that this was linked to the length of time they had worked in palliative care. These findings suggest that the 2005 Swiss guidelines do not protect nurses against the uncertainty related to process of palliative sedation. A national comprehensive multicentric study therefore needs to be developed to consolidate these results.
OBJECTIVE: As a follow-up to the first national survey of advance care planning uptake in New Zealand, which demonstrated a low level of plan completion, this study seeks to better understand the motivators and barriers associated with uptake.
METHOD: Using a qualitative approach and a purposeful sampling method, nine interviewees participated in semi-structured interviews exploring in further depth their knowledge, attitudes and activities in relation to planning for end-of-life care. Thematic analysis was applied to the transcripts and several key themes identified.
RESULTS: The five key themes were Knowledge of Advance Care Planning; Incomplete Planning; Relational Autonomy; Focus on Family; and Still Time to Plan.
CONCLUSION: A stepped process to encourage planning uptake is suggested, with legal and financial steps preceding the making of more personal values-based decisions salient to a serious diagnosis.
A patient's death can pose significant stress on the family and the treating anaesthetist. Anaesthetists' attitudes about the benefits of and barriers to attending a patient's funeral are unknown. Therefore, we performed a prospective, cross-sectional study to ascertain the frequency of anaesthetists' attendance at a patient's funeral and their perceptions about the benefits and barriers. The primary aim was to investigate the attitudes of anaesthetists towards attending the funeral of a patient. The secondary aims were to examine the perceived benefits of and barriers to attending the funeral and to explore the rate of bonds being formed between anaesthetists, patients and families. Of the 424 anaesthetists who completed the survey (response rate 21.2%), 25 (5.9%) had attended a patient's funeral. Of the participants, 364 (85.9%) rarely formed special bonds with patients or their families; 233 (55%) believed that forming a special bond would increase the likelihood of their attendance. Showing respect to patients or their families was the most commonly perceived benefit of attending a funeral. Participants found expression of personal grief and caring for the patient at the end-of-life and beyond beneficial to themselves and the family. Fear of their attendance being misinterpreted or perceived as not warranted by the family as well as time restraints were barriers for their attendance. Most anaesthetists had never attended a patient's funeral. Few anaesthetists form close relationships with patients or their families. Respect, expression of grief and caring beyond life were perceived benefits of attendance. Families misinterpreting the purpose of attendance or not expecting their attendance and time restraints were commonly perceived barriers.
Trial registration: ACTRN 12618000503224.
Objective: In Singapore, more elderly are living in nursing homes (NHs), with a resultant increase in deaths occurring in NHs. However, palliative care training is limited in Singapore’s core nursing curriculum, and many NHs rely on foreign-trained staff who may not have previous palliative care training. Our study aimed to evaluate whether a needs-based course can improve the palliative care knowledge and attitudes of NH nurses in Singapore.
Methods: Twenty-five nurses participated in the study. The intervention was an 8-week palliative care course developed based on needs assessment and led by a multidisciplinary faculty. A 50-item knowledge test was administered at baseline and 0 day and 3 and 6 months postcourse. Semistructured interviews were conducted at 3 months to assess for changes in attitudes and nursing practices.
Results: The mean knowledge score increased significantly from 31.4 (±4.4) precourse to 35.1 (±5.1) at 3 months. Knowledge scores in end-of-life care increased up to 6 months, and scores for pain and symptom management increased significantly at 3 months. Participants reported a positive change with improved communication skills and increased compassion. There was a lack of opportunities to apply some new knowledge and skills due to regulations and perceived residents’ preferences to engage more local senior staff.
Conclusion: The multidisciplinary needs-based palliative care course using various teaching modalities with follow-up knowledge tests helped to increase knowledge and improve communication skills and attitudes of NH nurses towards palliative care. The increase in knowledge and positive change in attitudes was noted to be sustained for at least 3 months postcourse.
Background and aim: Although the challenges of integrating palliative care practices across care settings are real and well recognised, to date little is known about palliative care practices of emergency physicians (EPs) in Kuwait. Therefore, this study aims to explore the attitude and knowledge of EPs in providing palliative care in all general hospitals in Kuwait.
Method: A cross-sectional survey was performed in the emergency rooms of all general hospitals in Kuwait using the Palliative Care Attitude and Knowledge Questionnaire.
Results: Of the total number of physicians working in emergency rooms (n=156), 104 (66.67%) had completed the survey. 76.9% (n=80) of the EPs had an uncertain attitude towards palliative care. Most of the EPs (n=73, 70.28%) did not discuss the patients’ need for palliative care either with the patients or with their families. Only 16 (15.4%) of the EPs responded correctly to most of the questions while nearly half of the EPs (n=51, 49%) had poor knowledge. Experience =11 years and better knowledge scores were independent predictors of positive attitude after adjustment of age, sex, qualifications, specialty, position and nationality (OR: 5.747 (CI 1.031 to 25.00), 1.458(CI 1.148 to 1.851); p values: 0.021, 0.002, respectively).
Conclusions: Despite recognising palliative care as an important competence, the majority of the EPs in Kuwait had uncertain attitude and poor knowledge towards palliative care. Efforts should be made to enhance physician training and provide palliative care resources to improve the quality of care given to patients visiting emergency departments.
The purpose of the current inquiry is to measure Jordanian student nurses' attitudes towards the care of dying patients using a cross-sectional survey. The sample of this study comprises 300 nursing students. Data was collected using the Frommelt's Attitude Toward Care of the Dying Form B (FATCOD-B). Most of the students were female (72%) in their second year (40.3%). The mean total score of all FATCD-B items was 95.8 out of 150 (SD 8.7). Student nurses had low mean scores for their attitude towards care of the dying. Two approaches could be taken to improve this situation. First, research is needed to fully understand and explain students' attitudes towards the care of dying patients. It might be more appropriate to utilize mixed research methods. The second is to integrate end-of-life care courses within the curricula of nursing programmes, currently the mainstay in improving students' knowledge and attitudes toward care of the dying.
Strategies to increase appropriateness of EoL care, such as shared decision making (SDM), and advance care planning (ACP) are internationally embraced, especially since the COVID-19 pandemic. However, individuals preferences regarding EoL care may differ internationally. Current literature lacks insight in how preferences in EoL care differ between countries and continents. This study's aim is to compare Dutch and Japanese general publics attitudes and preferences toward EoL care, and EoL decisions.
Methods: a cross-sectional survey design was chosen. The survey was held among samples of the Dutch and Japanese general public, using a Nationwide social research panel of 220.000 registrants in the Netherlands and 1.200.000 in Japan. A quota sampling was done (age, gender, and living area). N = 1.040 in each country.
More Japanese than Dutch citizens tend to avoid thinking in advance about future situations of dependence (26.0% vs 9.4%; P = .000); say they would feel themselves a burden for relatives if they would become dependent in their last phase of life (79.3% vs 47.8%; P = .000); and choose the hospital as their preferred place of death (19.4% vs 3.6% P = .000). More Dutch than Japanese people say they would be happy with a proactive approach of their doctor regarding EoL issues (78.0% vs 65.1% JPN; P = .000).
Preferences in EoL care substantially differ between the Netherlands and Japan. These differences should be taken into account a) when interpreting geographical variation in EoL care, and b) if strategies such as SDM or ACP – are considered. Such strategies will fail if an international “one size fits all” approach would be followed.
PURPOSE: Defining patients as 'terminally-ill' may be difficult. Therefore, determining when to shift the goal of care from curative to comfort care may be extremely challenging. The aim of this study was to merge when and how Registered Nurses (RNs) and Nurses' Assistants (NAs) adjust end-of-life care to pursue patient comfort at the end of their lives.
METHODS: A descriptive qualitative study based on multiple focus groups was performed in 2017 according to the COnsolidated criteria for REporting Qualitative research guidelines. In all, 25 RNs and 16 NAs across seven north-east Italian facilities that provide end-of-life care, voluntarily participated in the study. Each focus group was conducted following the same interview guide with open-ended questions, and was audiotaped. A thematic analysis was applied to interview transcripts.
RESULTS: The process of nursing care plan adjustment is based upon two main themes, around 'when' and 'how' to adjust it. Regarding when, 'Detecting the turning point', and 'Being ready to change continuously until the end' emerged as the main sub-themes. Regarding how, 'Weighing harms and benefits of nursing care interventions'; 'Advocating for patients' wishes', 'Sharing the adjustments inside the team at different levels', 'Involving family in the adjustments of nursing care'; and 'Allowing care to move away from evidence-based practice' were the sub-themes emerged.
CONCLUSIONS: Shedding light on the implicit decisional processes that inform care adjustments and the implementation of related strategies is essential to improve the quality of end-of-life care given that an early detection of the terminal phase has been reported to result in changes of care improving outcomes.
OBJECTIVES: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns and their families, to minimize suffering at the end of the neonate's life. This paper seeks to systematically summarize healthcare providers' perspectives related to end of life, in order to identify needs and inform future directions.
METHODS: Informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we systematically reviewed the literature discussing healthcare provider perspectives of neonatal end of life care ranging from year 2009 to 2020. To be included in the review, articles had to explicitly focus on perspectives of healthcare providers toward neonatal end of life care, be published in academic peer-reviewed sources, and focus on care in the United States.
RESULTS: Thirty-three articles were identified meeting all inclusion criteria. The literature covers, broadly, provider personal attitudes, experiences delivering care, practice approaches and barriers, and education and training needs. The experiences of physicians, physician assistants, nurse practitioners, and nurses are highlighted, while less is discussed of other providers involved with this work (e.g., social work, physical therapy).
CONCLUSION: Future research should focus on developing and testing interventions aimed at training and supporting healthcare providers working with neonates at end of life, as well as addressing barriers to the development and implementation of neonatal palliative teams and guidelines across institutions.
Background: According to the Latin America Association for palliative care, Brazil offers only 0.48 palliative care services per 1 million inhabitants. In 2012, no accredited physicians were working in palliative care, while only 1.1% of medical schools included palliative care education in their undergraduate curricula. As a reflection of the current scenario, little research about end-of-life care has been published so that studies addressing this subject in the Brazilian setting are crucial.
Methods: A cross-sectional study study conducted with students applying for the medical residency of the Federal University of São Paulo were invited to voluntarily participate in an anonymous and self-administered questionnaire survey. The latter included demographic information, attitudes, prior training in end-of-life care, prior end-of-life care experience, the 20-item Palliative Care Knowledge Test (PCKT) and a consent term.
Results: Of the 3086 subjects applying for residency, 2349 (76%) answered the survey, 2225 were eligible for analysis while 124 were excluded due to incomplete data. Although the majority (99,2%) thought it was important to have palliative care education in the medical curriculum, less than half of them (46,2%) reported having received no education on palliative care. The overall performance in the PCKT was poor, with a mean score of 10,79 (± 3). While philosophical questions were correctly answered (81,8% of correct answers), most participants lacked knowledge in symptom control (50,7% for pain, 57,3% for dyspnea, 52,2% for psychiatric problems and 43,4% for gastrointestinal problems). Doctors that had already concluded a prior residency program and the ones that had prior experience with terminal patients performed better in the PCKT (p < 0,001). The high-performance group (more than 50% of correct answers) had received more training in end-of-life care, showed more interest in learning more about the subject, had a better sense of preparedness, as well as a higher percentage of experience in caring for terminal patients (p < 0,001).
Conclusions: Our study showed that Brazilian physicians lack not only the knowledge, but also training in end-of-life medicine. Important factors to better knowledge in end-of-life care were prior training, previous contact with dying patients and prior medical residency. Corroborating the literature, for this group, training showed to be a key factor in overall in this area of knowledge. Therefore, Brazilian medical schools and residency programs should focus on improving palliative training, especially those involving contact with dying patients.
INTRODUCTION: We hypothesized that trauma providers are reticent to consider palliative measures in acute trauma care.
METHODS: An electronic survey based on four patient scenarios with identical vital signs and serious blunt injuries, but differing ages and frailty scores was sent to WTA and EAST members.
RESULTS: 509 (24%) providers completed the survey. Providers supported early transition to comfort care in 85% old-frail, 53% old-fit, 77% young-frail, and 30% young-fit patients. Providers were more likely to transition frail vs. fit patients with (OR = 4.8 [3.8-6.3], p < 0.001) or without (OR = 16.7 [12.5-25.0], p < 0.001) an advanced directive (AD) and more likely to transition old vs. young patients with (OR = 2.0 [1.6-2.6], p < 0.001) or without (OR = 4.2 [2.8-5.0], p < 0.001) an AD.
CONCLUSIONS: In specific clinical situations, there was wide acceptance among trauma providers for the early institution of palliative measures. Provider decision-making was primarily based on patient frailty and age. ADs were helpful for fit or young patients. Provider demographics did not impact decision-making.
Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training.
Methods: This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n = 4 patients, 4 family members) and oncologists (n = 10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets.
Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP.
Conclusions: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.
This article considers a particular aspect of palliative psychology that is inherent to the needs in the area of attitudes concerning Advance Healthcare Directives (AHDs) among Italian physicians and nurses after the promulgation of Law No. 219/2017 on AHDs and informed consent in 2018. The study utilized a mixed-method approach. The group of participants was composed of 102 healthcare professionals (63 females and 39 males). The quantitative part utilized the following scales: Attitudes toward Euthanasia, the Religious Orientation Scale, the Balanced Inventory of Desirable Responding, and the Testoni Death Representation Scale. The results were mostly in line with the current literature, especially concerning a positive correlation between religiosity and the participants' rejection of the idea of euthanasia. However, the qualitative results showed both positive and negative attitudes towards AHDs, with four main thematic areas: "Positive aspects of the new law and of AHDs", "Negative aspects of the new law and of AHDs", "Changes that occurred in the professional context and critical incidents", and "Attitudes towards euthanasia requests." It emerged that there is not any polarization between Catholics or religious people and secularists: Their positions are substantially similar with respect to all aspects, including with regard to euthanasia. The general result is that the law is not sufficiently understood, and so a quarter of the participants associate AHDs with euthanasia. Discussions on the opportunity for palliative psychologists to help health professionals to better manage these issues through death education courses are presented.
BACKGROUND: Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in the final stages of their life. Lack of knowledge of and negative attitude palliative care among nurses is one of the most common barriers to quality palliative care. This study, therefore, aimed to assess nurses' knowledge about palliative care and attitude toward end-of-life care in public hospitals in Wollega zones, Ethiopia.
METHODS: A multicenter institutional-based cross-sectional study design was employed to collect data from 372 nurses working in public hospitals in Wollega zones from October 02-22, 2019. A self-administered questionnaire with three different parts: Demographic characteristics of nurses, the Palliative Care Quiz for Nursing (PCQN), and the Frommelt Attitudes Towards Care of the Dying (FATCOD). SPSS version 21 was used for analysis used for data analysis. The binary logistic regression test was used for analysis at p < 0.05.
FINDINGS: Our final sample size was 422 nurses (response rate = 88%). With the mean total PCQN scores (9.34), the majority of them showed an inadequate level of knowledge about palliative care. The mean total FATCOD scores (79.58) displayed a positive attitude toward end-of-life care, with 52% of respondents eager to care for a dying person and their family. Nurses who had PC service experience [AOR = 1.94 CI (1.10-3.42), p = 0.02] and had ever attended training/lecture on PC [AOR = 1.87 CI (1.01-3.46), p = 0.04] were independently associated with nurses' knowledge about PC. Similarly, nurses who had no PC service experience [AOR = 0.41, CI (0.21-0.79), p = 0.008], who read articles/brochures about PC [AOR = 1.94, CI (1.11-3.39), p = 0.01] and had provided care for a smaller number of terminally ill patients [AOR = 1.74, CI (1.01-2.97), p = 0.04] were significantly associated with nurses' attitude towards end-of-life care.
CONCLUSION: The study highlighted that nurses' knowledge about palliative care is inadequate, and showed a less favorable attitude toward end-of-life care. The findings also provide evidence for greater attentions and resources should be directed towards educating and supporting nurses caring for patients with palliative care needs in Wollega Zones.
BACKGROUND: Advance care planning (ACP) is reported to improve the quality of outcomes of care among those with life-limiting conditions. However, uptake is low among people living with multiple sclerosis (MS) and little is known about why or how people with MS engage in this process of decision-making.
AIMS: To develop and refine an initial theory on engagement in ACP for people with MS and to identify ways to improve its uptake for those who desire it.
METHODS: Realist review following published protocol and reporting following Realist and Meta-narrative Evidence Synthesis: Evolving Standards (RAMESES) guidelines. A multi-disciplinary team searched MEDLINE, PsychInfo, CINAHL, Scopus, Web of Science, Embase, Google Scholar in addition to other sources from inception to August 2019. Quantitative or qualitative studies, case reports, and opinion or discussion articles related to ACP and/or end of life discussions in the context of MS were included, as well as one article on physical disability and one on motor neuron disease, that contributed important contextual information. Researchers independently screened abstracts and extracted data from full-text articles. Using abductive and retroductive analysis, each article was examined for evidence to support or refute 'context, mechanism, and outcome' (CMO) hypotheses, using the Integrated Behaviour Model to guide theory development. Quality was assessed according to methodological rigour and relevance of evidence. Those studies providing rich descriptions were synthesised using a realist matrix to identify commonalities across CMO configurations.
RESULTS: Of the 4,034 articles identified, 33 articles were included in the synthesis that supported six CMO hypotheses that identified contexts and mechanisms underpinning engagement in ACP for people with MS and included: acceptance of their situation, prior experiences, confidence, empowerment, fear (of being a burden, of death and of dying) and the desire for autonomy. Acceptance of self as a person with a life-limiting illness was imperative as it enabled people with MS to see ACP as pertinent to them. We identified the context of MS-its long, uncertain disease trajectory with periods of stability punctuated by crisis-inhibited triggering of mechanisms. Similarly, the absence of skills and confidence in advanced communication skills among health professionals prevented possibilities for ACP discussions taking place.
CONCLUSION: Although mechanisms are inhibited by the context of MS, health professionals can facilitate greater uptake of ACP among those people with MS who want it by developing their skills in communication, building trusting relationships, sharing accurate prognostic information and sensitively discussing death and dying.
BACKGROUND: Previous research has found racial differences in hospice knowledge and misconceptions about hospice care, which may hinder access to hospice care. Asian Indians are a rapidly growing population in the United States, yet limited research has focused on their beliefs toward end-of-life care. This project investigates Indian Americans' knowledge of and attitudes toward hospice care and advance care planning.
PROCEDURES: A cross-sectional design was employed using surveys about participants' knowledge of and attitudes toward hospice care and advance care planning. Surveys were conducted among Indian Americans, age 60 and over, recruited from Indian cultural centers in Northern California. The participants were first asked questions about hospice care. They were then given a summary explanation of hospice care and later asked about their attitudes toward hospice care. Data were analyzed using descriptive and bivariate analyses.
RESULTS: Surveys were completed by 82 participants. Findings revealed that 42.5% of respondents had an advance directive and 57.1% had named a health care proxy. Only 10% of respondents had known someone on hospice care and 10.4% correctly answered 4-5 of the knowledge questions. After being informed about hospice care, 69.6% of participants agreed that if a family member was extremely ill, they would consider enrolling him/her in hospice.
CONCLUSIONS: This study's results present a need for greater education about hospice services among older Asian Indians. Health practitioners should remain cognizant of potential misconceptions of hospice and cultural barriers that Asian Indians may have toward hospice care, so they can tailor conversations accordingly.