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.
Chaque polyhandicapé, quelle que soit la sévérité de son atteinte neurologique, a des interactions sociales et une histoire de vie qui lui sont propres. Son mode de communication parfois très limité rend le recueil de ses choix toujours difficiles et sujets à des interprétations parfois hasardeuses. C’est pourquoi, pour toutes décisions de soins impactant sur sa qualité de vie, il est indispensable de prendre l’avis d’un maximum de personnes pour s’approcher au mieux de ce que seraient les choix de ce patient peu ordinaire. Plus qu’une question d’équité, c’est une question d’éthique. Ainsi, toutes ces décisions doivent se faire en présence des experts médicaux mais aussi de ses proches, famille et professionnels qui partagent son quotidien, comme le montre l’exemple de la prise en charge d’un patient polyhandicapé atteint d’une insuffisance rénale terminale présenté dans cet article sous forme de vignette clinique. Ces regards croisés sont les meilleurs garants de décisions équilibrées. L’organisation de telles réunions demandent une vraie volonté de travail pluridisciplinaire qui ne passera que par la sensibilisation des experts au monde du handicap. C’est à la façon dont on traite les plus faibles qu’on juge d’une démocratie. Ainsi, la démocratie sanitaire devra passer par-là pour être aboutie.
OBJECTIVE: The purpose of this cross-sectional study was to identify the neuropsychological underpinnings of decision-making capacity in terminally ill patients with advanced cancer.
METHOD: Participants were 108 English-speaking adults. More than half (n = 58) of participants had a diagnosis of advanced cancer and were receiving inpatient palliative care; the rest were healthy adults. Participants completed a measure of decision-making capacity that assesses four legal standards of capacity (Choice, Understanding, Appreciation, and Reasoning), and several measures of neuropsychological functioning.
RESULTS: Patients with terminal cancer were significantly more impaired on measures of capacity and neuropsychological functioning. Surprisingly, in the terminally ill sample, there were no significant correlations between neuropsychological functioning and decision-making capacity.
CONCLUSION: The terminally ill sample exhibited high levels of neuropsychological impairment across multiple cognitive domains. However, few of the measures of neuropsychological functioning were significantly associated with performance on the decisional capacity subscales in the terminally ill sample. It is possible that end-of-life decisional capacity is governed by general, rather than domain-specific, cognitive abilities.
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of the health care providers (HCPs) who deliver this specialized care. The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer.
Methods:Nine HCPs (four nurses and five physicians) took part in in-depth semistructured interviews. Participants were eligible if they were a nurse or physician in Atlantic Canada; cared for at least one AYA patient with terminal cancer in the past 3 years; and were able to speak and understand English. Data were analyzed using interpretive phenomenological analysis.
Results: Analyses revealed four superordinate themes present in the data: (1) many unknowns and uncertainties associated with providing care for AYAs compounded by minimal or no training specifically concerning this population; (2) an intense emotional experience compared with caring for patients with terminal cancer of other ages; (3) personal identification with patients and their families; and (4) attempts to make sense of the circumstance thwarted by feelings of injustice and unfairness.
Conclusions: HCPs experienced unique emotional and logistical challenges when caring for AYAs with terminal cancer, which can influence the care they provide. HCPs' experiences highlight the need for training to support clinicians in caring for AYAs with terminal cancer to optimize their own well-being and delivery of health care services to this population.
BACKGROUND: Emotional preparedness for death is a distinct but related concept to prognostic awareness (PA). Both allow patients to prepare psychologically and interpersonally for death but they have primarily been examined in cross-sectional studies.
OBJECTIVE: To (1) explore the courses of change in good emotional preparedness for death and accurate PA and (2) evaluate their associations with severe anxiety symptoms, severe depressive symptoms, and quality of life (QOL) in cancer patients' last year.
METHODS: For this prospective, longitudinal study, we consecutively recruited 277 terminally ill cancer patients. Aims 1 and 2 were examined by univariate and multivariate generalized estimating equation analyses, respectively.
RESULTS: The prevalence of good emotional preparedness for death was 54.43%–65.85% in the last year, with a significant decrease only 91–180 vs. 181–365 days before death (odds ratio [95% CI] = 0.67 [0.47, 0.97]). Good emotional preparedness for death was associated with a lower likelihood of severe anxiety symptoms (adjusted odds ratio [95% CI] = 0.47 [0.27, 0.79]) and severe depressive symptoms (0.61 [0.39, 0.95]), but not with quality of life (ß [95% CI] = 0.49 [-2.13, 3.11]). However, accurate PA improved substantially (55.12%–70.73%) as death approached and accurate PA was positively associated with severe depressive symptoms (2.63 [1.63, 4.25]).
CONCLUSIONS: Good emotional preparedness for death and accurate PA remained largely stable and improved substantially, respectively, in cancer patients' last year. Both measures were significantly associated with psychological distress. Healthcare professionals should not only cultivate accurate PA but also promote cancer patients' emotional preparedness for death, which may improve their psychological well-being.
BACKGROUND: Enhancing quality of life takes precedence in the terminal stage of a disease, when a cure is considered impossible and all alternative methods to prevent disease progression have been exhausted. Life review, involving appreciating accomplishments and resolving conflicts, is widely considered to be an effective approach to bringing peace to terminal patients.
PURPOSE: This study was conducted to assess the effects of life review on quality of life in terminal patients.
METHODS: The Cochrane Library, PubMed, MEDLINE, CINAHL, CEPS, and ProQuest databases were searched for original studies published between 2007 and July 2018. Studies that used experimental designs to assess the effects of life review on quality of life in terminal patients, involved patients aged >18 years, and were published in English or Chinese were considered eligible for inclusion. Studies that measured quality of life in individuals other than patients as well as unpublished papers or data were excluded. The search terms used included "life review," "end of life," "terminal or terminally ill," "advanced cancer," "palliative," "hospice," and "quality of life." The quality of each included study was assessed using the Downs and Black checklist.
RESULTS: Six studies with 296 patients were included in the review. The participants in the included studies were from multiple countries. Life review was found to affect quality of life significantly (95% CI [0.147, 0.668], Z = 3.062, p < .05). The selected studies exhibited moderate heterogeneity (I = 42.407, p > .1).
CONCLUSIONS: Life review was found to affect quality of life significantly in the participants in the included studies. The feasibility and safety of applying life review interventions should be considered for terminal patients, and implementers of these interventions should be trained and qualified. Only a few studies in the literature have evaluated the effects of life review therapy in terminal patients. Further studies that use stricter selection criteria are necessary to evaluate the efficacy of the life review intervention before its adoption in clinical practice.
OBJECTIVES: To explore advance directive (AD) preferences and the facilitators and barriers of promoting ADs among terminally ill older patients in China.
DESIGN: A scoping review was used to identify key themes in ADs.
SETTING AND PARTICIPANTS: Studies from 2007 to 2017 were identified from the MEDLINE and Cochrane libraries. Articles concerning important components of ADs in terminally ill older patients were selected.
MEASURES: Eligible articles concerning important components of ADs in terminally ill older patients were thematically synthesized. Later, implementation evidence was identified from core components.
RESULTS: We used 13 articles and identified key components in ADs: (1) Chinese cultural characteristics; (2) policy support; (3) advance care planning (ACP); (4) hospice-palliative care (HPC); (5) prognosis disclosure and life-sustaining treatment preference; (6) knowledge about ADs for patients and their families; (7) the prevalence of ADs; (8) implementation of ADs; (9) staff experience and training; and (10) effective communication between patients, their families, and health care professionals. Facilitators in implementing ADs included previous comfort-oriented end-of-life care experience of patients or their families, and the enactment of relevant policy. Barriers included traditional Chinese cultural beliefs; lack of policy; lack of knowledge of ADs, ACP, and HPC; and poor communication between physicians, patients, and family members.
CONCLUSIONS/IMPLICATIONS: Chinese patients still showed positive preferences toward ADs. The implementation of ADs could be promoted through public education about ADs, the learning of ACP and HPC, and relevant policy development in China.
Most patients in palliative care have problems with dry mouth caused by medication or as a direct result of their condition. Dry mouth may cause problems that affect the primary disease negatively and contribute to poorer quality of life in palliative patients. This randomized controlled trial compared the efficacy of three different oral moisturizers: 17% watery solution of glycerol; oxygenated glycerol triester (marketed as Aequasyal in Europe and as Aquoral in the USA); and a newly developed product, Salient. Of the three products, glycerol provided the best relief from xerostomia directly after application, but had no effect after 2 h. By contrast, the effects of Aequasyal and Salient were largely maintained over the same period. The findings for oral discomfort and pain and speech problems showed a similar pattern. Despite its poor effect after 2 h, patients preferred glycerol over Salient and Aequasyal, probably because of the unpleasant taste of Aequasyal and the consistency and mode of application of Salient. Within the limitations of this study, none of the three products tested was found to be clinically completely adequate. However, the glycerol solution was preferred by this group of patients, and its short-lived effect can be compensated for by frequent applications.
OBJECTIVES: Older patients with end-stage renal disease are willing participants in advance care planning but just over 10% are engaged in this process. Nephrologists fear such conversations may upset patients and so tend to avoid these discussions. This approach denies patients the opportunity to discuss their end-of-life care preferences. Many patients endure medically intensive end-of-life scenarios as a result. This study aims to explore the rationale underpinning nephrologists' clinical decision-making in the management of older patients with end-stage renal disease and to make recommendations that inform policymakers and enhance advance care planning for this patient group.
METHODS: A qualitative interview study of 20 nephrologists was undertaken. Nephrologists were asked about their management of end-stage renal disease in older patients, conservative management, dialysis withdrawal and end-of-life care. Eligible participants were nephrologists working in Ireland. Five nephrologists participated in a recorded focus group and 15 nephrologists participated in individual digitally recorded telephone interviews. Semistructured interviews were conducted; thematic analysis was used to distil the results.
RESULTS: Three key themes emerged: barriers to advance care planning; barriers to shared decision-making; and avoidance of end-of-life care discussion.
CONCLUSIONS: Advance care planning is not an integral part of the routine care of older patients with end-stage renal disease. Absence of formal training of nephrologists in how to communicate with patients contributes to poor advance care planning. Nephrologists lack clinical experience of conservatively managing end-stage renal disease and end-of-life care in older patients. Key policy recommendations include formal communication skills training for nephrologists and development of the conservative management service.
Background: Palliative care (PC) is an essential component of comprehensive care of patients with intracerebral hemorrhage (ICH). In the present study, we sought to characterize the variability of PC use after ICH among US hospitals.
Methods: ICH admissions from hospitals with at least 12 annual ICH cases were identified in the Nationwide Inpatient Sample between 2008 and 2011. We used multilevel logistic regression modeling to estimate between-hospital variance in PC use. We calculated the intraclass correlation coefficient (ICC), proportional variance change, and median OR after accounting for individual-level and hospital-level covariates.
Results: Among 26,791 ICH admissions, 12.5% received PC (95% CI 11.5-13.5). Among the 629 included hospitals, the median rate of PC use was 9.1 (interquartile range 1.5-19.3) per 100 ICH admissions, and 150 (23.9%) hospitals had no recorded PC use. The ICC of the random intercept (null) model was 0.274, suggesting that 27.4% of the overall variability in PC use was due to between-hospital variability. Adding hospital-level covariates to the model accounted for 25.8% of the between-hospital variance observed in the null model, with 74.2% of between-hospital variance remaining unexplained. The median OR of the fully adjusted model was 2.62 (95% CI 2.41-2.89), indicating that a patient moving from 1 hospital to another with a higher intrinsic propensity of PC use had a 2.63-fold median increase in the odds of receiving PC, independent of patient and hospital factors.
Conclusions: Substantial variation in PC use after ICH exists among US hospitals. A substantial proportion of this between-hospital variability remains unexplained even after accounting for patient and hospital characteristics.
Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient-centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision-making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end-of-life care.
Background: Dyspnea is a common, very distressing symptom in advanced cancer patients that challenges them, their relatives, and healthcare professionals. This narrative review summarizes important literature dealing with the evidence for opioids, benzodiazepines, oxygen, and steroids for treating dyspnea in advanced cancer patients.
Methods: A selective literature search was undertaken in PubMed, Embase, and the Cochrane Library and extended with literature from the reference lists of included studies up to April 2016. Inclusion criteria were that patients were suffering from advanced cancer and were receiving either opioids, benzodiazepines, corticosteroids, or oxygen. The outcome of interest was the reduction of dyspnea measured via a visual analogue scale (VAS), a numerical rating scale (NRS), or a Borg scale. This narrative review describes in detail the findings of 13 studies.
Results: Nine studies deal with the effectiveness of opioids for reducing dyspnea in advanced cancer patients. Five of these found a significant benefit to the use of opioids compared to a placebo. Three found no significant improvements, and two favored combinations of opioids and benzodiazepines. Few high-quality studies were available that used benzodiazepines (n = 3, no difference, significant improvement with midazolam + morphine, significant difference for midazolam) or oxygen (n = 2, both without significant difference). Only one study examined treating dyspnea with steroids in patients with advanced cancer, and that study indicated a benefit of steroids compared to a placebo.
Conclusions: Opioids are the drug of choice for treating refractory dyspnea in advanced cancer patients. Neither benzodiazepines nor oxygen showed significant benefit. In addition, there is insufficient literature available to draw a conclusion about the effectiveness of steroids for treating persistent dyspnea in advanced cancer patients.
Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date. Positive trends toward increased, appropriate integration of palliative care services in the care of children with cancer and their families have been observed. Continued research, advocacy, and education are necessary to optimize the care of this vulnerable population of patients and their families.
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
Objective: Little data about the management of drugs in terminally ill palliative care cancer patients is available. The present study aimed at describing the evolution of anticancer and non-anticancer treatments (NACTs) in cancer patients in palliative care units. The second objective was to identify factors leading to the medical decision to withdraw or not NACTs.
Methods: Data from 1,091 cancer patients hospitalized in palliative care units were prospectively collected in 2010-2011, through a multicenter, observational French cohort.
Results: The median overall survival after admittance in palliative care units was 15 days. Specific anticancer treatments were systematically stopped in the first 24 h in palliative care units, but for 4.5% of patients. Regarding NACTs, patients were heavily treated with strong opioids (74%), corticosteroids (51%), and antidepressants (21.8%) until death. Antiulcer agents (63.4%), antibiotics (25.7%), thrombosis prevention (21.8%), antidiabetics (7.6%), and transfusions (4%) were often also continuously prescribed. In multivariate analysis, ECOG PS 4 was an independent predictor of continuous prescription of morphine and an independent predictor of discontinuation of corticosteroids, proton-pump inhibitors, antidiabetics, and preventive anticoagulant therapy. Infection symptoms independently predicted continuous prescription of paracetamol. Paralysis and cancer palpable mass independently predicted corticosteroid withdrawal. Brain metastases independently predicted antiulcer withdrawal. Hemorrhage independently predicted preventive anticoagulant withdrawal. Availability to a venous access independently predicted paracetamol and antiulcer continuous prescriptions. Co-prescriptions independently predicted continuous prescriptions (antibiotics with antiulcer, antifungals with antibiotics) or withdrawal (preventive anticoagulant with antiplatelets and antifungals).
Conclusions: NACT prescription remained commonplace in terminally ill palliative cancer patients, although their benefit is questionable.
Advanced pancreaticobiliary malignancy tends to be uncurable at presentation and causes significant morbidity for patients. Palliation for malignant biliary obstruction should be minimally invasive, cost-effective, and aim to improve quality of life of patients. Strategies of endoscopic palliation of malignant biliary obstruction can differ based on sites and degree of biliary obstruction with complex decisions of optimal stent type and placement that involve conscientious planning by a multidisciplinary team.
PURPOSE: Despite clear benefits of early integration of palliative care (PC) and oncology, concerns remain about negative perceptions of PC. Our aim was to explore current knowledge and perceptions of PC in cancer patients.
METHODS: We conducted a prospective, cross-sectional survey. A 16-item questionnaire was distributed to all cancer patients (N=103) upon admission to the oncology ward of an Australian tertiary academic hospital. Chi-squared test was used to examine for significant factors related to patients' perceptions.
RESULTS: Ninety-six patients (93%) completed the questionnaire; 76% had metastatic cancer. We explored the following domains: Experience and knowledge: 76% had heard of PC; 21% had received PC. Self-rated PC knowledge was varied. Forty-five percent believed that PC was only associated with EOLC; those more likely to disagree had received PC services (p=0.039). Integration of PC and oncology: Majority believed that they could receive oncology care (86%) and anti-cancer treatment (81%) whilst receiving PC. Those who had heard of PC and with better self-rated knowledge were more likely to believe that they could receive concurrent anti-cancer treatment (p=0.005, p=0.045, respectively). Feelings: 77% felt comforted with PC involvement; this was significantly associated with older age (p=0.047) and understanding that oncology (p<0.005) and anti-cancer treatment (p=0.013) could continue. However, some felt frightened (40%) and hopeless (29%) about referral to PC. Fifty percent felt more comfortable with referral to 'supportive care' services (versus PC).
CONCLUSIONS: Our survey demonstrates reasonable understanding and relatively positive feelings about PC, associated with experience and knowledge. Nonetheless, there is ongoing need for better patient and public education about PC.
Objective: The aim of this study is to assess the quality of life of caregiver's. The study was conducted at the RABAT National Institute of Oncology in MOROCCO.
Results: 120 patients on the palliative phase of advanced cancer were included. Severe fatigue was observed in 64.2% of patients with an average of 90.55±14.7. There was a positive association between functional dimensions and overall quality of life and a negative association between symptoms and overall quality of life. Patients under 30 years had a lower quality of life. According to the multi-varied analysis, physical function, emotional functioning and fatigue were significant predictors of Health related quality of life/overall quality of life (p<0.05).
Metabolic intratumoral heterogeneity (ITH) is known to be related with cancer treatment outcome. However, information on the temporal changes in metabolic ITH during chemotherapy and the correlations between metabolic changes and treatment outcomes in patients with pancreatic cancer is sparse. We aimed to analyze the temporal changes in metabolic ITH and the predictive role of its changes in advanced pancreatic cancer patients who underwent palliative chemotherapy. Methods: We prospectively enrolled unresectable locally advanced or metastatic pancreatic cancer patients before first-line palliative chemotherapy. [18F]fluorodeoxyglucose positron emission tomography was performed at baseline (T1) and at the first response follow-up (T2). Standardized uptake values (SUVs), volumetric parameters, and textural features of the primary pancreatic tumor were analyzed. Relationships between the parameters at T1, T2, and changes in the parameters with treatment response, progression-free survival (PFS), and overall survival (OS) were assessed. Results: Among 63 enrolled patients, the best objective response rate was 25.8% (95% confidence interval [CI], 14.6% to 37.0%). The median PFS and OS were 7.1 months (95% CI, 5.1 to 9.7 months) and 10.1 months (95% CI, 8.6 to 12.7 months), respectively. Most of the parameters changed significantly during the first-line chemotherapy, in a way of reducing ITH. Metabolic ITH was more profoundly reduced in responders than in nonresponders. Multiple Cox regression analysis identified high baseline compacity (P = 0.023) and smaller decreases in SUVpeak (P = 0.007) and entropygray-level co-occurrence matrix (GLCM) (P = 0.033) to be independently associated with poor PFS. Patients with a high CA 19-9 (P = 0.042), high pretreatment SUVpeak (P = 0.008), and high coefficient of variance at T2 (P = 0.04) showed worse OS. Conclusion: Reduction in metabolic ITH during palliative chemotherapy in advanced pancreatic cancer patients is associated with treatment response and might be predictive of PFS and OS.