BACKGROUND: Advanced cancer in young parents (PWAC) can increase dying concerns, the fluctuating thoughts, or feelings, conscious, or unconscious, about an approaching death by a person facing a terminal illness or a family member coping with the impending death of a loved one. However, limited research has been conducted to identify dying concerns in an ill parent as the research has focused on older adults.
OBJECTIVE: Our goal was to identify dying concerns that PWAC are expressing and to understand how these concerns affect measurable outcomes.
METHOD: CINHAL, MEDLINE, PsychARTICLES, PsycINFO, Social Work Abstracts, Health Source: Nursing/Academic Edition, and Psychology and Behavioral Sciences Collection were searched. Articles included were samples of PWAC, peer-reviewed, and published within the last 10 years. Elderly or pediatric populations, PWAC with adult children, and early-stage cancer were excluded. The initial search resulted in 1,526 articles, 18 were identified as potentially relevant. Fourteen articles were identified and reviewed.
RESULTS: PWAC expressed concerns for their children (n = 11), concerns for their co-parent (n = 4), and personal concerns (n = 11). Additionally, PWAC have decreased quality of life, have significant emotional and psychological distress, and have increased family dysfunction in relation to their concerns. Samples limit the generalizability of the findings. Majority of the articles consisted of White, upper, middle-class (n = 8) women (n = 7) diagnosed with breast cancer (n = 11) within nuclear families (n = 11).
SIGNIFICANCE OF RESULTS: Dying concerns are described in the literature from a fairly narrow sample of PWAC. Future research should focus on recruiting participants from diverse backgrounds, genders, diagnosis types, and non-nuclear families. Identifying concerns for the co-parent would also add to the understanding of dying concerns.
Le refus de soins interroge les soignants à titre individuel et collectif. Il demande d’être expliqué et compris car il peut s’agir d’une forme d’expression chez certains patients. Ces situations difficiles nécessitent d’avoir une attitude adéquate et notamment de cultiver un travail en équipe pour que soignant et soigné se sentent reconnus et respectés.
Bien que prévu par la loi et quels qu’en soient les motifs, le refus de soins émanant du patient déstabilise les soignants. Pour ces derniers, il est important de comprendre les attitudes vis-à-vis de ce refus, les liens avec les pratiques professionnelles afin de proposer des repères pour une démarche clinique.
Introduction: The mortality of patients with neck-of-femur (NOF) fractures remains high, with increasing recognition of a subgroup of patients with predictable mortality. The role of palliative care in this group is poorly understood and underdeveloped. This research aims to investigate current clinician attitudes toward palliative care for patients with NOF fracture, and explore processes in place for early identification for patients nearing the end of life.
Materials and Methods: An online survey was constructed with reference to National Institute for Health and Clinical Excellence end-of-life guidelines (CG13) and distributed to multidisciplinary teams involved in the care of NOF fracture patients in 4 hospitals of contrasting size and location in the United Kingdom.
Results: Forty health-care professionals with a broad range of seniority and roles responded. The palliative care team was felt to have several potential roles in the care of NOF fracture patients, but there was difference of opinion between specialties about what these were. A number of barriers to palliative referral were identified, including stigma and active surgical management. The majority (75%) felt that all NOF fracture patients should have a discussion about ceiling of care, with difference of opinion about who should do so, and when.
Discussion: As the elderly population has grown, so too has the volume of NOF fracture patients. It is increasingly important to identify and escalate patients who have poor prognosis following hip fracture and ensure they benefit from palliative care where appropriate. This survey demonstrates a barrier to addressing the care of these patients and a lack of consensus on identification and referral to appropriate palliative care planning.
Conclusions: There should be close communication between specialties with regard to requirements for palliative care in NOF fracture patients, with ongoing education and clear local and national guidance to ensure they receive the right care at the right time.
CONTEXT: Many in the rapidly-growing Chinese-American population are non-English-speaking and medically-underserved, and few engage in advance care planning (ACP). Evaluating culturally-determined factors that may inhibit ACP can inform programs designed to increase ACP engagement.
OBJECTIVES: To describe attitudes and beliefs concerning ACP in older, non-English speaking Chinese-Americans in a medically-underserved urban region.
METHODS: Patients were consecutively recruited from a primary care practice in New York City to participate in a cross-sectional survey. Attitudes and beliefs were measured using an ACP Survey tool and the validated Traditional Chinese Death Beliefs measure. Exploratory analyses evaluated associations between these two measures, and between each measure and sociodemographics, primary dialect, acculturation (using The Suinn-Lew Asian Self Identity Acculturation Scale), and health status (using the Short Form-8 Health Survey).
RESULTS: Patients (n=179) were 68.2 years on average; 55.9% were women, and 81.0% were non-English speaking (42.8% Cantonese, 15.2% Mandarin, 19.3% Toisanese, 19.3% Fuzhounese). Most had low acculturation (mean=1.7/5.0), and highly-rated physical and mental health (means=70.1/100 and 81.5/100). Few patients (15.1%) had an advance directive and 56.8% were unfamiliar with any type; 74.4% were willing to complete one in the future. Thirty-two percent "agreed" that "talking about death in the presence of a dying person would accelerate death". The analyses revealed no significant associations.
CONCLUSION: These Chinese-American older adults had low acculturation and very limited knowledge of, or engagement in, ACP. Factors that may predict culturally-determined attitudes and beliefs about ACP were not identified. Further research can inform efforts to improve ACP engagement in this population.
The legality of euthanasia and assisted suicide (AS) and nature of regulations of these practices remain controversial and the subject of lively debate among experts and the general public. Our study investigates attitudes and behaviours towards AS among older adults in Switzerland where the practice of AS has a relatively long history and remains rather unregulated. We aim to explore how individuals' preferences regarding their end of life, as well as individuals' trust in institutions involved in the practice or control of AS are associated with attitudes and behaviours towards AS. We analyse nationally representative data of adults aged 55 and over from wave 6 (2015) of the Survey of Health, Ageing and Retirement in Europe (SHARE) in Switzerland (n = 2,145). While large majorities supported current legal arrangements around AS in Switzerland (81.7%) and stated that they could consider AS for themselves under certain circumstances (61.0%), only a minority either was a member of a right-to-die organisation already (4.9%) or stated they were likely to become a member of such an organisation (28.2%). Stated preferences for control over the end of life and for maintaining essential capabilities at the end of life showed a positive association with AS-related attitudes and behaviours, whereas preferences for feeling socially and spiritually connected, as well as for not being a burden displayed a negative association with our outcomes. Higher levels of trust in one's relative were positively associated with both support for the legality of AS and potential use of AS. A positive association was also found between trust in the Swiss legal system and support for the legality of AS. By contrast, trust in religious institutions displayed a negative association with all five AS-related attitudes and behaviours. Similarly, trust in healthcare insurance companies was negatively associated with potential use of AS. Taken together, older adults were generally supportive towards current practices regarding AS. This approval appears to be closely related to individuals' preferences and, at different extends, to trust in social and public institutions with regard to end-of-life issues, which is relatively high in Switzerland.
Family caregivers of people with dementia often must make crucial medical decisions for them that may increase the burden of care experienced. Although undertaking Advance Care Planning (ACP) might reduce their decision-making burden, completion rates remain very low. The present study aimed to explore the common beliefs of family caregivers of people with dementia about undertaking ACP for themselves. A qualitative study was conducted, using a semi-structured questionnaire based on the Theory of Planned Behavior. Face-to-face interviews were conducted with a convenience sample of 20 family caregivers of people with dementia in Israel. The behavioral beliefs expressed by the participants referred to the dual benefits of ACP, for the person who will not be able to make medical decisions at the end of life and for themselves. Participants mentioned that family members and friends were the main persons with whom they would consult in making decisions regarding ACP. Personal characteristics and instrumental factors were mentioned as enablers and barriers to undertaking ACP. Findings from the study provide an important basis for expanding research and for developing interventions that can encourage undertaking ACP.
Context: Despite being associated with dependence and social stigma, methadone is a potential end-of-life option in complex cancer pain.
Objectives: To explore attitudes and opinions about methadone and its potential role and current use in complex end-of-life pain.
Methods: Semi-structured interviews (n = 30) with physicians in specialized palliative care, transcribed and analyzed with conventional qualitative content analysis.
Results: According to the physicians, patients and relatives expressed unexpectedly few negative attitudes, not affecting methadone’s use as an analgesic. Complex pain in bone-metastatic cancer of the prostate, breast and kidney, as well as pancreatic cancer and sarcomas were recurrent suggestions of appropriate indications.
Most of the informants stated that they applied a mechanism-based treatment and mainly prescribed low-dose methadone as an add-on to an existing opioid therapy to benefit from methadone´s proposed NMDA-receptor inhibiting properties, e.g. in cases with reduced opioid sensitivity. Despite its complex pharmacokinetics with a long half-life, most informants expressed defined strategies to avoid side-effects such as respiratory depression, especially when initiating treatment in the home-care setting.
While many palliative care physicians expressed an overly enthusiastic attitude, others stressed the risks of overconfidence, low precision in use, and overlooked treatment options. Besides the obvious physical pain-relieving effects, they stated that effective pain relief could result in a reduced workload and emotional empowerment, both for physicians and staff.
Conclusion: Methadone, especially in the form of low-dose add-on to other opioids is widely advocated in Swedish specialized palliative care as a practical and safe method with rapid onset in complex pain situations at the end of life.
Purpose: Do-not-resuscitate (DNR) decision-making in severely ill patients presents many difficult medical, ethical, and legal challenges. The primary aim of this study was to explore cancer patients’ and health care professionals’ attitudes regarding DNR decision-making authority and timing of the decision.
Methods: This study was a questionnaire survey among Danish cancer patients and their attending physicians and nurses in an oncology outpatient setting. Potential differences between patients’, physicians’, and nurses’ answers to the questionnaire were analyzed using Fisher’s exact test.
Results: Responses from 904 patients, 59 physicians, and 160 nurses were analyzed. The majority in all three groups agreed that DNR decisions should be made in collaboration between physician and patient. However, one-third of the patients answered that the patient alone should make the decision regarding DNR, which contrasts with the physicians’ and nurses’ attitudes, 0% and 6% pointing to the patient as sole decision-maker, respectively. In case of disagreement between patient and physician, a majority of both patients (66%) and physicians (86%) suggested themselves as the ultimate decision-maker. Additionally, 43% of patients but only 19% of physicians preferred the DNR discussion being brought up early in the course of the disease.
Conclusions: With regard to the decisional role of patient vs. physician and the timing of the DNR discussion, we found a substantial discrepancy between the attitudes of cancer patients and physicians. This discrepancy calls for a greater awareness and discussion of this sensitive topic among both health care professionals and the public.
Background: Knowing the opinions of patients with Progressive Neurological Diseases (PNDs) and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this paper is to describe the creation and psychometric properties of the newly developed APND-EoLC questionnaire (the Attitudes of Patients with Progressive Neurological Disease to End of Life Care questionnaire).
Methods: Following focus group discussion, four main areas of interest were identified: patients’ and family members’ attitudes towards end-of-life care, factors influencing decisions about treatment to prolong patients’ life, concerns and fears regarding dying, and opinions on the system of care. The created questions were divided into domains based on factor analysis and psychometric properties were evaluated by sample of 209 patients with PND and 118 their family members.
Results: The final version of the scale contains a total of 28 questions divided into six domains (end-of-life control, keeping patients alive, trust in doctors/treatment, trust in social support, sense of suffering, and dependence/loss of control) and five individual questions determining views of the care system with specified response options. Construct validity was verified by confirmatory factor analysis for each evaluated area individually. Appropriate psychometric properties were identified in the questionnaire.
Conclusions: The APND-EoLC questionnaire can be recommended for use in both research and clinical practice.
Previous research has linked death attitudes, palliative care self-efficacy, and attitudes toward care of the dying among nursing students and other nursing samples, but not among hospice nurses. The purpose of this study was to investigate these relationships among hospice nurses (N = 90). More positive attitudes toward care of the dying were associated with lower fear of death and death avoidance as well as higher neutral acceptance and escape acceptance, but not with approach acceptance. More positive attitudes toward care of the dying was associated with perceived capability to answer end-of-life concerns, but not with perceived capability to respond to end-of-life symptoms. Clinical interventions seeking to improve attitudes toward care of the dying among hospice nurses may be most effective by targeting death attitudes and improving self-efficacy in the area of discussing end-of-life concerns with patients.
Background: Pediatric palliative care occurs across contexts through the child's illness trajectory, including within the child or young person's community. Interactions with the ambulance service may occur with a child's deterioration, crisis, or when needing transfer, but there is little research on this interaction.
Aim: To explore the experiences and attitudes of ambulance officers in managing pediatric patients with palliative care needs.
Design: targeted e-mail survey was sent exploring perceptions of the involvement with these patients including exposure, comfort, resuscitation topics, and supports available.
Setting/Participants: Participants were Queensland ambulance officers known to have had an interaction with one of the last 50 pediatric palliative care referrals across Queensland.
Results: Twenty-two survey responses were received. Most of the palliative group accessed ambulances for the 13-month study period. Most ambulance officers did not easily identify patients as receiving palliative care. Many participants felt these cases were challenging, confidence levels varied, and staff counselling services were felt to be relevant. Ambulance officers were most likely to use correspondence provided by the family from their usual team as a guide for emergency management. Half of the participants felt patients receiving pediatric palliative care should have a "not for resuscitation" order. Respondents suggested officer support could be improved through increased patient documentation and promotion of existing officer supports.
Conclusions: These findings demonstrate challenges experienced by ambulance officers and suggest practical ways in which pediatric palliative care services can better support emergency services.
PURPOSE: To explore the attitude of nursing professionals towards death.
DESIGN: Systematic qualitative review methods were used.
METHODS: A search was conducted in the PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and CUIDEN databases. This study included 17 articles.
FINDINGS: Thirteen categories emerged, which were grouped into three themes: meanings and feelings during the dying process; coping strategies in the face of death; and the importance of training, experience, and providing a dignified death. In the different accounts of the participants, it was found that death had a large negative emotional impact on them, that the participants complained about the lack of previous training in the care of dying patients, and that avoiding these complex situations was one of the strategies most commonly used by professionals to face the death of a patient.
CONCLUSIONS: The lack of training in the basic care of terminally ill patients, as well as today's preconceived negative idea about death, both cause health professionals to experience situations of great stress and frustration resulting, on many occasions, in resorting to avoidance of these situations, thus preventing dying with dignity.
CLINICAL RELEVANCE: In this article, we explore the consequences of this process for nursing professionals, common coping strategies, and possible areas for improvement, such as the need for the training of nursing professionals in the care of terminally ill patients and their families.
BACKGROUND: Nutrition is a basic patients' need and an important component of nursing. End-of-life cancer patients can experience difficulties in eating and drinking, sometimes requiring artificial nutrition and hydration (ANH). Nurses' knowledge and attitudes greatly influence nursing care. Nurses may lack knowledge of ANH. To date, no study has explored the knowledge and attitudes of oncology and palliative care nurses toward end-of-life ANH.
OBJECTIVE: To describe oncology and palliative care nurses' knowledge of and attitudes toward ANH.
METHODS: A multicenter cross-sectional study was conducted in 7 regions of Italy using the Italian version of the Questionnaire on Knowledge and Attitudes in Providing ANH for Terminal Cancer Patients. Attitudes were divided into benefits and burdens of providing ANH. Data were analyzed by descriptive statistics.
RESULTS: High percentages of oncology and palliative care nurses showed reasonable knowledge about ANH. More disagreement was evidenced about benefits and burdens of ANH, and lower importance was given to them.
CONCLUSIONS: Some misconceptions and a low level of awareness exist among some nurses about ANH. More nursing studies should be conducted and extended to different care settings. Moreover, guidelines should be reinforced with a nursing perspective to better define nurses' role in the decision-making process on ANH.
IMPLICATIONS FOR PRACTICE: This exploration of nurses' knowledge of and attitudes toward ANH in end-of-life cancer patients can contribute to an understanding of how nurses can be involved in better meeting cancer patients' nutritional needs at the end of life.
The purpose of this study was to examine the psychometric properties of the Advance Directive Attitude Survey in Korean (K-ADAS), a measure of attitudes toward advance directives (ADs). A total of 118 low-income, community-dwelling older adults (mean age, 75.09 years) participated. An exploratory factor analysis (EFA) was conducted to determine the factor structure of the K-ADAS. Validity was further assessed by known associations of the K-ADAS with perceived susceptibility and severity using part of the Advance Care Planning surveys. Its reliability was examined by calculating alpha coefficients. EFA determined a three-factor structure model with good model fit. Validity was further supported with significant correlations between the K-ADAS and susceptibility and severity. Reliability was supported by adequate level of Cronbach's alpha. The K-ADAS was a valid and reliable measure for assessment of AD attitudes with a sound model fit. Thus, the K-ADAS can be used to assess AD attitudes among community-dwelling elders.
Identifying the degree of attitudes has a critical effect on the application of hospice and palliative care. However, studies on hospice and palliative care attitudes highlight only statistically significant outcomes and do not propose comprehensive conclusions or generalizations about attitudes. Therefore, we conducted a systematic review to synthesize and appraise articles that analyzed nurses' attitudes regarding palliative care services. After compiling, the finally selected 13 articles indicated that influencing factors on nurses' attitudes were experience in caring for the dying, career or education level, knowledge and education toward hospice and palliative care, religious belief, death (education and anxiety), and age. Most nurses and nursing students displayed positive cognition and attitudes, yet a low level of knowledge. These results show that an introduction of hospice and palliative care education and practical training in nursing curricula is necessary. And such implementation should take place within sanatoriums as well, where attending the terminally ill takes place at all times. Because hospice and palliative care is usually provided by a multidisciplinary team, it is necessary to identify which factors influence each member of the team likewise. It is anticipated this study will become a preliminary basis for such research.
AIM AND OBJECTIVES: To explore the experiences and views of nurses who provide non-pharmacological therapies for chronic pain management in palliative care.
BACKGROUND: Nursing expertise in palliative care is essential in providing pain relief to patients with chronic diseases. Examinations of the use of non-pharmacological therapies for chronic pain management in palliative care have revealed what non-pharmacological therapies have been used, but there is insufficient knowledge regarding nurses' attitudes, views, and experiences regarding pain therapies in this context.
DESIGN: A qualitative descriptive design was chosen.
METHODS: Data were collected through individual interviews in a purposive sample with 15 nurses to ensure maximum variation. The data were analyzed using qualitative content analysis. This study aligns with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.
RESULTS: The analysis yielded four categories, as follows: "Building and sustaining favorable therapeutic relationships" involved the creation of trust and a solid relationship; in "recognizing the diversity of patients' needs," person-centered care is expressed as being vital for individualized non-pharmacological pain management; "incorporating significant others" describes how nurses can help to ease the patient's pain by identifying positive encounters with family members or friends; and in "recognizing the existence of barriers," nurses highlight vulnerable groups such as children, for whom nurses require special education to enable optimal non-pharmacologic pain management.
CONCLUSION: The unique knowledge that nurses gain about the patient through the nurse-patient relationship is central and crucial for successful non-pharmacological pain management.
RELEVANCE TO CLINICAL PRACTICE: This study emphasizes the need for nurses to get to know their patient and to be open and sensitive to patients' descriptions of their unique life situations, as this provides the necessary knowledge for optimal care and pain management. Nurses should be encouraged and given the opportunity to attend specialized training in palliative care and pain management.
Caring for the dying patient can be stressful for nursing students. The purpose of this study was to describe a multimodal educational intervention designed to improve nursing students' attitude toward care of the dying patient and the family. Sophomore nursing students participated in an interactive end-of-life (EOL) lecture and simulation. A quasi-experimental, pretest/posttest design with a convenience sample was used for this study. Frommelt Attitudes Toward Care of the Dying version A was used to measure attitudes toward care of the dying patient before and after educational intervention. In addition, students were given an open-ended questionnaire to reflect on their perceptions of the EOL experience and a demographic questionnaire. A paired t test revealed a statistically significant difference between the pretest and posttest (t50 = 3.1, P = .003) on the Frommelt Attitudes Toward Care of the Dying, suggesting that students gained a more positive attitude toward caring for the dying patient. Three themes emerged from the content analysis and included knowing what to say and how to offer presence, becoming emotionally prepared, and learning skills to comfort. The use of lecture and simulation allowed students to assimilate the knowledge and affective skills needed to provide quality EOL care.
OBJECTIVE: There is a lack of information about patients' attitudes towards and knowledge of resuscitation and advance care planning (ACP) in the palliative care unit (PCU). The aims of this study were to examine (a) patients' attitudes towards and knowledge of the topic of resuscitation, (b) patients' level of education about their illness and (c) their concept of ACP.
METHODS: This study used a qualitative methodology that involved semi-structured interviews with advanced cancer patients admitted to the PCU. Interviews were conducted during the first week after admission, recorded digitally and transcribed verbatim. Data were analysed through content analysis using NVivo 12.
RESULTS: Eighteen interviews revealed the following themes: (a) ambivalence regarding preference for or refusal of resuscitation, (b) patient confidence concerning their level of education, (c) lack of information about ACP and (d) positive perception of the stay in the PCU. The data showed that a high percentage of PCU patients desired resuscitation even though education about their illness was mostly perceived as good. Many patients did not receive information about ACP. Patients perceived the stay in the PCU positively.
CONCLUSION: The study results reveal that there is lack of knowledge about ACP and resuscitation in patients in the PCU.
Background: The prevalence of undertreated cancer pain remains high. Suboptimal pain control affects quality of life and results in psychological and emotional distress. Barriers to adequate pain control include fear of opioid dependence and its side effects.
Aim: To investigate the attitudes and perceptions of morphine use in cancer pain in advanced cancer patients and their caregivers and to examine the influence of caregivers’ attitudes and perceptions on patients’ acceptance of morphine.
Design: Qualitative study involving semi-structured individual interviews transcribed verbatim and analyzed thematically.
Setting/Participants: A total of 18 adult opioid-naïve patients with advanced cancer and 13 caregivers (n = 31) were recruited at a private tertiary hospital via convenience sampling.
Results: Attitudes and perceptions of morphine were influenced by previous experiences. Prevalent themes were similar in both groups, including perceptions that morphine was a strong analgesic that reduced suffering, but associated with end-stage illness and dependence. Most participants were open to future morphine use for comfort and effective pain control. Trust in doctors’ recommendations was also an important factor. However, many preferred morphine as a last resort because of concerns about side effects and dependence, and the perception that morphine was only used at the terminal stage. Caregivers’ attitudes toward morphine did not affect patients’ acceptance of morphine use.
Conclusion: Most participants were open to future morphine use despite negative perceptions as they prioritized optimal pain control and reduction of suffering. Focused education programs addressing morphine misperceptions might increase patient and caregiver acceptance of opioid analgesics and improve cancer pain control.