Background: Patient-reported medical status and treatment goal are measures of prognostic understanding with demonstrated relationships to important clinical and patient-reported outcomes in the general cancer population. Among older adults, relationships between these measures and other patient-reported (quality of life [QOL], symptoms, functional impairment) and clinical (hospitalization risk, survival) outcomes remains unclear.
Methods: We enrolled patients =70 with advanced gastrointestinal cancers, collecting patient-reported medical status (terminally ill vs not), treatment goal (curative vs non-curative), QOL (EORTC-Elderly Cancer Patients), symptoms (Edmonton Symptom Assessment System [ESAS]), and functional impairment (activities of daily living [ADLs]). We also obtained information about hospitalizations and survival. To explore relationships between patient-reported medical status, treatment goal, QOL, symptoms, functional impairment, hospitalizations, and survival, we used regression models adjusted for age, sex, and education.
Results: Of 103 patients, 49.5% reported terminally ill status and 64.0% a non-curative treatment goal. Terminally ill status was associated with worse QOL (EORTC illness burden: 53.59 vs 35.26, p = 0.001), higher symptom burden (ESAS: 28.15 vs 16.79, p = 0.002), more functional impairment (ADLs: 3.63 vs 5.24, p = 0.006), greater hospitalization risk (HR = 2.41, p = 0.020), and worse survival (HR = 1.93, p = 0.010). We did not find associations between patient-reported treatment goal and these outcomes.
Conclusions: In older adults with advanced cancer, report of terminally ill status was associated with other important patient-reported and clinical outcomes, suggesting disease severity may inform illness perceptions. We did not find similar associations for patient-reported treatment goal, indicating that questions related to medical status and treatment goal measure different constructs and more nuanced measures are needed.
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.
Aim: Aim was to describe how Registered Nurses (RNs) and assistant nurses (ANs) working in residential care homes and home care perceived quality end-of-life care after implementation of the Liverpool Care Pathway (LCP) in terms of subjective importance of care aspects and actual care given.
Design: Descriptive cross-sectional.
Methods: Registered Nurses (N = 22; 100% response rate) and ANs (N = 120; 59% response rate) working in a Swedish municipality. Data collection with a study-specific questionnaire (50 items) about perceived reality (PR) and subjective importance (SI). Non-parametric statistics.
Results: Implementation of the LCP ensured systematic assessment and alleviation of patients' symptoms and needs. The ANs, more than the RNs, perceived that the patients received the best possible nursing and medical care (p = .01). Both groups considered that communication with patients and families as well as the information exchange between the team members was facilitated. Areas for improvement were identified about psychological and existential support and patients and families' participation in care.
BACKGROUND: General Practitioners (GPs) often play an important role in caring for people at the end of life. While some international studies suggest that GPs experience a number of barriers to providing palliative care, little is known about views and experiences of GPs in Australia. This study explored Australian GPs' perceptions of barriers and enablers to the provision of palliative care and provides new insights into how to implement best practice care at the end of life.
METHODS: This was a qualitative study using 25 semi-structured phone interviews conducted with GPs practising in metropolitan and non-metropolitan New South Wales, Australia. Data were analysed using qualitative content analysis.
RESULTS: GPs reported difficulties with palliative care provision due to i) the complex and often emotional nature of doctor-family-interaction; ii) a lack of evidence to guide care; and iii) the need to negotiate roles and responsibilities within the healthcare team. GPs listed a number of strategies to help deal with their workload and to improve communication processes between healthcare providers. These included appropriate scheduling of appointments, locally tailored mentoring and further education, and palliative care guidelines which more clearly outline the roles and responsibilities within multidisciplinary teams. GPs also noted the importance of online platforms to facilitate their communication with patients, their families and other healthcare providers, and to provide centralised access to locally tailored information on palliative care services. GPs suggested that non-government organisations could play an important role by raising awareness of the key role of GPs in palliative care provision and implementing an "official visitor" program, i.e. supporting volunteers to provide peer support or respite to people with palliative care needs and their families.
CONCLUSIONS: This study offers new insights into strategies to overcome well documented barriers to palliative care provision in general practice and help implement optimal care at the end of life. The results suggest that researchers and policy makers should adopt a comprehensive approach to improving the provision of palliative care which tackles the array of barriers and enablers identified in this study.
OBJECTIVES: Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional therapy for a child may be challenging and depends on parents' knowledge and expectations. The goal of this study was to explore parental perceptions of pRT.
METHODS: Twenty-eight children referred for pRT were enrolled in our prospective study. Parents were counseled regarding the indication and expected outcomes. They then completed a series of questionnaires to assess their understanding of pRT, side effects that their child experienced, and how the outcomes compared to their expectations.
RESULTS: The majority of parents listed pain relief and addressing new disease as the main indication for pRT. When asked about expectations, the majority chose improvement in quality of life and prolongation of their child's life. Interestingly, 32% of parents expected pRT to cure their child's disease. Most patients undergoing pRT did not experience any adverse symptoms. The outcomes of pRT in the majority of cases exceeded parental expectations.
CONCLUSION: Improved quality of life with pRT sometimes blurs the distinction between palliation and cure. We found that most parents understand the aim to improve quality of life, although a proportion of parents perceived pRT as a cure to their child's disease. Despite this, the majority of parents reported that the outcome of the pRT course exceeded their expectations. We postulate that parents derive comfort from pursuing active treatment.
Background: Despite advances in medical technology, resources for pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. Physicians' awareness of and willingness to provide general palliative care and refer to specialized palliative care are key elements for providing PPC.
Objective: The aim of this study was to explore physicians' perceptions of PPC and the differences therein between nononcologists and oncologists.
Design: A nationwide survey was conducted among physicians caring for children in 45 tertiary hospitals in South Korea.
Measurements: A questionnaire was developed to identify the confidence in and need for PPC, appropriate timing for PPC referrals, and perceived barriers to PPC.
Results: Overall, 141 physicians responded (response rate: 10.4%). Physicians' confidence in PPC was low, although most reported a high need for PPC. Lack of workforce and facilities specialized in PPC (60.2%) and patients' or caregivers' negative recognition (55.9%) were reported as the main barriers to PPC implementation. Specialized PPC services in children's hospitals were preferred as the model of care (84.2%). Compared with nononcologists, oncologists showed higher confidence levels in decision making and communication with patients and families with poor prognosis (p = 0.041) and education and providing end-of-life care (p < 0.001). Furthermore, oncologists preferred earlier referrals than did nononcologists.
Conclusions: To promote PPC provision and improve the quality of life of pediatric patients and their families, it is important to introduce PPC early into disease-modifying treatment at any level of health care. Developing education and training curricula regarding PPC for health care providers caring for children with severe illnesses is crucial.
OBJECTIVE: To identify the perception of health professionals about neonatal palliative care.
METHOD: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed.
RESULTS: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life.
CONCLUSION: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care.
Is it possible to end one’s life well with dementia? The perception of dementia as death brought into life flows from ideas about humanness embedded in medicine’s Cartesian paradigm. Dementia as incurable brain disease exacerbates negativity. But the real impact of dementia is that it changes social relations: to live well with dementia requires a relational not Cartesian understanding of life. A relational ontology prioritizes social health: to live is to be held in connection. Negativity produces the disconnection that is death, with or without disease. When people with dementia are held in connection, they live a better life.
The exploratory study’s aim was to examine how art therapists perceive the role of the art medium in the treatment of bereaved clients. Eight Israeli art therapists reflected on this topic through drawings and interviews. Qualitative analysis identified three major roles, specifically art as: (1) a space for the client’s grief work; (2) a communication channel that impacts the art therapist’s experience and therapeutic relationship; and (3) a shared space where client and therapist create a new narrative. The discussion deals with the findings and their clinical implications, identifying the central therapeutic processes involved in art therapy with bereaved clients.
The purpose of this review was to evaluate end-of-life care (EOLC) in the intensive care unit (ICU) from the perspective of family members. Sandelowski's segregated approach from Joanna Briggs Institute (JBI) Mixed-Methods Systematic Reviews guided this review. A search was conducted in PubMed, CINAHL, PsycINFO, EMBASE, and ProQuest databases and identified 50 papers (33 quantitative, 15 qualitative, and 2 mixed-methodology studies). Five synthesized themes (distressing emotions, shared decision-making, proactive communication, personalized end-of- life care, and valuing of nursing care) were identified. For quantitative results, study methodologies and interventions were heterogeneous and did not always improve family members' perceived quality of care and family members' psychological distress. Configuration of qualitative and quantitative data revealed ICU end-of-life interventions were ineffective because they were not guided by family members' reported needs and perceptions. To fulfill the family members' needs for the patients' EOLC in the ICU, researchers should develop a theory to explicitly explain how the family members experience ICU EOLC and implement a theory-based intervention to improve family psychological outcomes.
Introduction: Patients with serious illness often have pain, uncontrolled symptoms, and poor quality of life. Evidence continues to evolve regarding the role of cannabis to treat chronic pain, nausea, and anorexia. Little is known about how patients with serious illness perceive its benefits and harms. Given that an increasing number of clinicians across the United States are treating patients with medical cannabis, it is important for providers to understand patient beliefs about this modality. We assessed patient perceptions of benefits and harms of cannabis who obtained a medical cannabis card within an ambulatory palliative care (APC) practice.
Methods: We recruited patients with a medical cannabis card, allowing for legal possession of cannabis oil, from an APC practice in Georgia. All participants reported using cannabis products. Patients completed an online survey that included questions about their cannabis use, concurrent opiate or controlled medication use, and perceptions of benefits and harms of cannabis.
Results: All 101 patients invited to participate completed the survey. A majority had cancer (76%) and were married (61%), disabled or retired (75%), older than 50 years of age (64%), and men (56%). Most patients ingested (61%) or vaporized (49%) cannabis products. A majority of respondents perceived cannabis to be important for their pain (96%) management. They reported that side effects were minimally bothersome, and drowsiness was the most commonly reported bothersome harm (28%). A minority of patients reported cannabis withdrawal symptoms (19%) and concerns for dependency (14%). The majority of patients were using concurrent prescription opioids (65%). Furthermore, a majority of cancer patients reported cannabis as being important for cancer cure (59%).
Conclusion: Patients living with serious illnesses who use cannabis in the context of a multidisciplinary APC practice use cannabis for curative intent and for pain and symptom control. Patients reported improved pain, other symptoms, and a sense of well-being with few reported harms.
OBJECTIVES: To understand the meaning attributed by the nurse to the management of nursing care to the person hospitalized due to clinical complications caused by AIDS; to analyze actions related to palliative care; and to construct a theoretical matrix regarding the management of nursing care.
METHOD: Qualitative, exploratory research, guided by the Grounded Theory. Seven nurses and ten nursing technicians were interviewed between May and September 2015, in a university hospital, located in Rio de Janeiro State, Brazil.
RESULTS: Five categories that covered the profile of the hospitalized person, palliative care, intervening conditions for care management, the need for professional qualification, and other aspects to better organize and manage care, including conflict management arose.
FINAL CONSIDERATIONS: The theoretical matrix values the quality of life, the need to understand the flow of care to avoid readmissions and not adherence to medications, requiring new research in the area, such as implementation.
Nursing students, who have been receiving the End-of-Life Nursing Education Consortium (ELNEC) Core training throughout their Bachelor of Science in Nursing program, have a unique perspective of the benefits of this training. In addition, they have insight as to where an online ELNEC module series specifically for undergraduate nursing students would best be integrated within the curriculum. This study used a mixed methods strategy to evaluate students' opinions on the placement of end-of-life care education within the curriculum and their experience of having received ELNEC training previously throughout their program. Senior-level nursing student opinions on the placement of the ELNEC modules within the curriculum were equally divided, with one-third suggesting placement at the sophomore level, one-third suggesting placement at the junior level, and one-third suggesting placement at the senior level. Students also offered a recommendation for an end-of-life care simulation integration into the Bachelor of Science in Nursing curriculum. Students who have been receiving ELNEC training integrated throughout the curriculum reported feeling comfortable with providing end-of-life care after graduation. Themes extracted from students' suggestions on improving end-of-life care education were as follows: (1) The quality and consistency of instruction needs to be enhanced, (2) palliative care education should be delivered using various methods, and (3) methods to assess education on palliative care should be improved. Students reported that ELNEC training helped them to gain insight into the key elements in palliative care, to understand the differences and similarities between palliative care and hospice, and to understand the nurse's role in palliative care and hospice.
INTRODUCTION: The number of people dying in emergency departments (EDs) is increasing. However, EDs are not well designed or resourced for safe and effective End-Of-Life (EOL) care encounters, and there is little evidence regarding clinicians' perceptions and experiences of providing such care when the death is sudden and unexpected.
AIM: This study explored nurses' perceptions and experiences of caring for patients who die suddenly and unexpectedly in the ED.
METHODS: Open-end responses were collected as part of a larger descriptive survey design. The qualitative data were analysed thematically.
RESULTS: 211 ED nurse completed the online survey. Within the qualitative data, five themes were identified during analysis: 1) key elements of EOL care, 2) systemic and environmental barriers, 3) educational deficits, 4) role ambiguity, and 5) emotional impact. Participants identified communication, a standardised approach, and better educational preparedness as the most important elements of EOL care when the death was sudden and unexpected.
CONCLUSIONS: ED nurses want to provide high quality care to dying patients and their families. However, their efforts are hampered by systemic and environmental barriers outside their control. There is a need for a culture shift to overcome the barriers that currently obstruct ED nurses from providing meaningful and effective EOL care in the ED.
AIM: This study explored the attitudes, experiences, and perceptions of Korean nurses toward advance directives (ADs) before the establishment of new Well-Dying Law.
METHODS: A sequential explanatory mixed method design was applied. We administered a constructed questionnaire on attitudes toward ADs and end-of-life issues and experience related to end-of-life decision-making. A Korean-translated version of the KAESAD [Knowledge-Attitudinal, Experimental Survey on ADs] was administered by 245 nurses. Semi-structured interviews (N = 16) were audio-recorded, transcribed, and coded in a qualitative content analysis.
RESULTS: The quantitative results revealed the nurses' perspectives on ADs: that valuing patient's autonomy, authority, or rights is vital to the implementation of ADs and end-of-life decision-making. Also, nurses reported that patients should be knowledgeable and informed about ADs. These responses allowed us to generate an interview, which revealed four themes in adopting the Well-Dying Law, including ADs. Themes with 'benefits' and 'roles of health care providers' mainly supported the quantitative results. Themes with 'ethical issues,' such as disagreement between patients and family members on ADs, and 'preparation,' regarding adopting the new law, should be importantly considered when implementing ADs in clinical settings.
CONCLUSIONS: Our study highlights that nurses need to develop sufficient knowledge on the laws, and communication skills to help patients be knowledgeable and make their own decisions regarding ADs. To successfully adopt the Well-Dying Law, our findings suggest that a nationwide public campaign and a continuing education program for nurses to manage ethical issues regarding ADs are required.
BACKGROUND: Palliative sedation for existential suffering (PS-ES) is a controversial clinical intervention. Empirical studies about physicians' perceptions do not converge in a clear position and current clinical practice guidelines do not agree either regarding this kind of intervention.
AIM: To gain deeper insight into physicians' perceptions of PS-ES, the factors influencing it, the conditions for implementing it and the alternatives to it.
DESIGN: Systematic review of qualitative, quantitative and mixed-methods studies following the Peer Review Electronic Search Strategies and Preferred Reporting Items for Systematic Reviews and Meta-analyses protocols; quality appraisal and thematic synthesis methodology.
DATA SOURCES: Seven electronic databases (PubMed, CINAHL, Embase, Scopus, Web of Science, PsycINFO, PsycARTICLES) were exhaustively searched from inception through March 2019. Two reviewers screened paper titles, abstracts and full texts. We included only peer-reviewed journal articles published in English, French, German, Dutch, Spanish, Italian or Portuguese that focused on physicians' perceptions of PS-ES.
RESULTS: The search yielded 17 publications published between 2002 and 2017. Physicians do not hold clear views or agree if and when PS-ES is appropriate. Case-related and individual-related factors that influenced physicians' perceptions were identified. There is still no consensus regarding criteria to distinguish between necessary and sufficient conditions for invoking PS-ES. Some alternatives to PS-ES were identified.
CONCLUSIONS: To date, there is still no consensus on physicians' perceptions of PS-ES. Further research is necessary to understand factors that influence physicians' perceptions and philosophical-ethical presuppositions underlying this perceptions.
BACKGROUND AND OBJECTIVES: Little is known about the quality of end-of-life care for patients with advanced CKD. We describe the relationship between patterns of end-of-life care and dialysis treatment with family-reported quality of end-of-life care in this population.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We designed a retrospective observational study among a national cohort of 9993 veterans with advanced CKD who died in Department of Veterans Affairs facilities between 2009 and 2015. We used logistic regression to evaluate associations between patterns of end-of-life care and receipt of dialysis (no dialysis, acute dialysis, maintenance dialysis) with family-reported quality of end-of-life care.
RESULTS: Overall, 52% of cohort members spent = 2 weeks in the hospital in the last 90 days of life, 34% received an intensive procedure, and 47% were admitted to the intensive care unit, in the last 30 days, 31% died in the intensive care unit, 38% received a palliative care consultation in the last 90 days, and 36% were receiving hospice services at the time of death. Most (55%) did not receive dialysis, 12% received acute dialysis, and 34% received maintenance dialysis. Patients treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis. After adjustment for patient and facility characteristics, receipt of maintenance (but not acute) dialysis and more intensive patterns of end-of-life care were associated with lower overall family ratings of end-of-life care, whereas receipt of palliative care and hospice services were associated with higher overall ratings. The association between maintenance dialysis and overall quality of care was attenuated after additional adjustment for end-of-life treatment patterns.
CONCLUSIONS: Among patients with advanced CKD, care focused on life extension rather than comfort was associated with lower family ratings of end-of-life care regardless of whether patients had received dialysis.
INTRODUCTION: The proportion of hospitals with specialist palliative care services in the USA has increased substantially over the past decade. Severe acute brain injury presents with unique challenges, especially regarding quality of life. The growth and increased recognition of neurocritical care as a subspecialty has not been paralleled by studies regarding how best to integrate palliative care for this unique patient population. Thus, we surveyed members of the Neurocritical Care Society (NCS) to explore current practice patterns, perceptions, and preferences regarding integration of palliative care in the neurological intensive care unit (Neuro-ICU).
METHODS: We created a 19-item survey using SurveyMonkey to assess practice patterns, perceptions, and preferences of neurointensivists regarding integration of palliative care in the Neuro-ICU. The survey, approved by the NCS research committee, was distributed to all active members of the NCS.
RESULTS: A total of 424 NCS members representing 19% of the 2200 list serve members completed the survey. The majority (58%) of respondents were attending physicians, who worked primarily in a dedicated Neuro-ICU (67%), at university affiliated academic medical centers (65%). Palliative care consultations are utilized infrequently (< 11%) by the majority of the respondents (59%). The most common indication for a palliative consultation was to discuss goals of care and make treatment decisions (73%). A large majority (77%) either agreed or strongly agreed that palliative care services were utilized in the management of difficult cases apart from discussions regarding withdrawal of life sustaining therapy. Palliative care needs of Neuro-ICU patients were considered different from patients in other ICUs by the majority of respondents (66%).
CONCLUSION: Our study provides insights into the current perceptions, practice patterns, and preferences of neurointensivists as it relates to palliative care consultation in the Neuro-ICU.
Palliative care is a crucial component in improving peoples' end-of-life period. It is important to understand the wishes of people at the end of life and the perceptions of their healthcare providers regarding these wishes. As nurses play a key role in patient care, in this study we set out to determine nurses' perceptions regarding what constitutes a "good death", comparing what they thought their older patients would prefer to their own preferences for their own end-of-life care. Questionnaires asking about various options of end-of-life care were distributed to nurses, and they were asked how they thought older people would respond to each of the questions and what their own preferences would be if they were terminally ill. In total, 656 participants were enrolled and they rated relief from suffering as the most important component, both for themselves and for those in their care. More than 80% of nurses agreed with all of the statements on the questionnaire. However, some of the nurses' preferences for their own end of life differed from those they expected their patients to value.
Background: Despite the global consensus on the importance of palliative care for patients with multiple sclerosis (MS), many patients in developing countries do not receive palliative care. Improving access to palliative care for MS requires a contextual understanding of how palliative care is perceived by patients and health professionals, the existing care pathways, and barriers to the provision of palliative care.
Objective: This study aims to examine and contrast the perceptions of MS patients, neurologists, and palliative care physicians towards providing palliative care for patients with MS in Malaysia.
Methods: 2 MS patients, 5 neurologists, and 5 palliative care physicians participated in this qualitative study. Each participant took part in a semi-structured interview. The interviews were transcribed verbatim, and analysed using an iterative thematic analysis approach.
Results: Patients and neurologists mostly associated palliative care with the end-of-life and struggled to understand the need for palliative care in MS. Another barrier was the lack of understanding about the palliative care needs of MS patients. Palliative care physicians also identified the scarcity of resources and their lack of experience with MS as barriers. The current referral-based care pathway itself was found to be a barrier to the provision of palliative care.
Conclusions: MS patients in Malaysia face several barriers in accessing palliative care. Overcoming these barriers will require improving the shared understanding of palliative care and its role in MS. The existing care pathway also needs to be reformed to ensure that it improves access to palliative care for MS patients.