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.
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.
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.
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.
Nurses play an integral role in high-quality patient care. Thus, their skills in providing end-of-life care should be assessed and continually enhanced. Education intended to improve end-of-life skills must address the affective/emotional component of nursing care. Evidence demonstrates that emotional engagement and resilience among health care providers are correlated with improved quality outcomes and, conversely, that burnout and stress negatively affect patient safety. Addressing the emotional needs of health care providers is critical to improving quality throughout the health care system. An evidence-based workshop was implemented among direct care staff on a hospital-based palliative care unit, with the goal of fostering emotional engagement to improve staff perceptions and attitudes about caring for patients at or near the end of life. Although perceptions about quality of death were not affected by this intervention, there was a significant improvement in attitudes about end-of-life nursing care. Qualitative feedback also reflected appreciation for small group discussions and opportunities to debrief with peers away from the unit. This intervention reflected the value of emotional engagement in educational efforts to improve end-of-life nursing care.
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.
Canuck Place Children’s Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist and clinical instructor through West Coast College of Massage Therapy. This study aimed to explore clinicians’ perspectives on the value of providing massage therapy to support children in hospice care, their families, and staff. The research participants (n = 6) comprised Canuck Place clinicians who have experience with the massage therapy practicum. In this descriptive phenomenological inquiry, semistructured interviews and thematic analysis were used. The findings demonstrated that Canuck Place clinicians valued the massage therapy practicum for its practical support in terms of creating access to massage therapy and self-care in the hospice. Massage therapy was also valued for supporting physical wellness (injury prevention/maintenance and symptom management) and psychosocial wellness (supporting dignity, interconnection, intraconnection, and rest/relaxation and providing a source of comfort/nurturing). This study is the first to explore clinicians’ perceptions of massage therapy within a pediatric hospice and contributes to understanding massage therapy’s potential role in the support of children, families, and staff within a hospice setting.
The objective of this study was to explore nurses' perceptions of end-of-life care following the withdrawal of the Liverpool Care Pathway (LCP). Thirteen semi-structured interviews were conducted with nurses working in palliative care. Data were analysed using thematic analysis. Three themes emerged: perceptions of the LCP, prevailing issues, and patients' and families' experiences. This study suggested that the removal of the pathway has not remedied the issues attributed to it. Further, the way in which the LCP was removed indicates that the non-expert media can play a negative role in how palliative care is perceived, which inhibits the care process. In this respect it is important that 'insider' voices are also heard, in order to educate and also redress disinformation. Similarly, broader, persisting, contextual challenges facing staff need addressing in order to prevent a repeat of the issues leading to the removal of the LCP.
BACKGROUND: Good communication with the family is a clinical imperative for high quality end-of-life (EOL) care in intensive care unit (ICU). Many interventions aim to improve EOL communication, and the choice of an outcome instrument has important implications for evaluating interventions. The purpose of this project is to search and review available instruments' psychometric properties and determine which best measures family-clinician communication in the ICU.
METHOD: A stepwise method was used by searching 2 databases (PsycInfo and Web of Science) to identify instruments and articles that provide information about scale psychometric properties.
INSTRUMENTS: Three instruments were identified, including Family Inpatient Communication Survey, Family Perception of Physician-Family Caregiver Communication, and Quality of Communication (QOC).
RESULTS: Reliability estimates were high (= 0.79) in all 3 instruments. The QOC’s convergent validity estimates exceed its discriminant validity values, and the QOC is an intervention-sensitive measure used to examine families’ treatment response in randomized control trials.
CONCLUSION: Quality of Communication is the most suitable instrument to measure family's perceptions of EOL communication in the ICU. Quality of Communication scores provide a deeper understanding of family-clinician communication and data about how to improve EOL care in ICUs.
BACKGROUND: According to the World Health Organization, palliative care is one of the main components of healthcare. As the incidence of cancer is increasing in the world, home-based palliative care can be beneficial for many patients. This study was designed to explore health care providers' perceptions about home-based palliative care in terminally ill cancer patients.
METHODS: This qualitative study was carried out using the conventional content analysis from October 2016 to September 2018 in Iran. Participants were home care providers who were selected using purposive sampling. The data were collected through 18 individual interviews, and a focus group meeting. Data were analyzed based on the method proposed by Lundman and Graneheim.
RESULTS: from the data analysis, 511 initial codes were extracted, which were categorized into the two main categories of challenges and opportunities for home-based palliative care and 10 subcategories. The subcategories of challenges included deficiencies in inter-sectoral and inter-professional cooperation, lack of infrastructures for end-of-life care, challenges related to the management of death, challenges of transferring patients to home, providing non-academic palliative care, lack of political commitment of the government and Spiritual vacuum. The category of opportunities included subcategories of cost-effectiveness, moving towards socializing health, and structure of the health system.
CONCLUSIONS: Home-based palliative care requires government and health system support. Structural and process modification in the healthcare can provide conditions in which terminally ill cancer patients receive appropriate care in home and experience death with dignity through support of family, friends and healthcare.
Dans nos sociétés occidentales le renforcement de la valeur d’autonomie a pris corps à travers différentes dispositions législatives, dont la possibilité de rédiger des directives anticipées. Leur mise en œuvre questionne les professionnels de santé.
Objectif: L'objectif principal de ce travail était de recueillir la perception pluridisciplinaire de soignants, puis, secondairement, de décrire leur pratique d’information et d’aide à la rédaction des directives anticipées.
Méthode: Cette enquête est à visée prospective. Un questionnaire a été remis un jour donné à la promotion 2016/2017 d’un diplôme inter-universitaire en soins palliatifs (DIUSP). Le questionnaire se composait de dix questions fermées, 12 questions ouvertes et un encadré libre.
Résultats: Le sentiment des professionnels de santé était hétérogène, 56,3 % se disaient à l’aise, 44 % d’avis partagé. Plusieurs moments sont cités pour présenter les directives anticipées. Sur la forme, 25 % des répondants pensaient qu’allier un modèle type avec des zones de texte libre permet d’engager un dialogue patient soignant. Les psychologues considéraient que les directives anticipées ne doivent servir qu’à transmettre des informations médicales. Si la plupart des répondants ont délivré des informations sur les directives anticipées, 81,3 % n’ont jamais accompagné de patient pour leur rédaction et 57,1 % n’ont pas eu à les utiliser. Leur valeur opposable est adéquate pour 56,3 % des répondants.
Conclusion: La perception des directives anticipées est favorable, mais leur appropriation par des professionnels de santé sensibilisés à la démarche palliative reste délicate. Des difficultés ressortent telles qu’aborder le sujet de la fin de vie, trouver le temps nécessaire pour échanger avec les personnes qui souhaitent en rédiger.
PURPOSE: The purpose of this study was to explore the perceptions of critical care nurses regarding the withdrawal or withholding of enteral nutrition (EN) and parenteral nutrition (PN) at the end-of-life, which is not allowed according to the current law in South Korea.
METHODS: This was a cross-sectional study utilizing a self-report survey. The participants in the study were 141 nurses working in the intensive care units of a tertiary university hospital. The critical care nurses' general attitudes about EN and PN at the end-of-life were measured using the questionnaires developed by Lubart, Leibovitz, and Habot. The nurses responded to additional questions on whether withdrawal or withholding of EN or PN at the end-of-life should be legally allowed.
RESULTS: The mean scores of the general attitude items on EN ranged between 3.03 and 3.35 on a 5-point Likert scale where a value of 1 represents "strongly disagree" and a value of 5 represents "strongly agree," while those for PN ranged between 2.89 and 3.65. Respecting attitudes toward EN and PN, critical care nurses had more negative attitudes about stopping PN than EN. Regarding attitudes about whether patients should be legally able to refuse EN, 34.3% agreed, while 25.7% disagreed. For PN, 40.0% agreed, while 24.3% disagreed.
CONCLUSION: Discussions about making the withdrawal and withholding of artificial nutrition legal should be initiated. Moreover, education regarding evidence about the outcomes of EN and PN during end-of-life care and up-to-date clinical guidelines about it should be provided.