The concept of health-related quality of life (HRQoL) had been used as a patient reported outcome measure in healthcare settings. It has been conceptualised and measured using validated instruments in the Western scientific community. However, in the Saudi literature, the true meaning of this concept is still lacking. The aim of this study is to explore the gap in literature and define the concept of HRQoL, identify its key domains and conceptualise it as perceived specifically by patients with renal failure and undergoing haemodialysis in Saudi Arabia. This PhD included two strands, an empirical qualitative study and a critical analysis of the HRQoL concept and its measurement in the Western as well as the Saudi literature. Using qualitative research methods, the empirical study was conducted in one centre in the Eastern Region of Saudi Arabia. Twenty two In-depth qualitative interviews were conducted in the Arabic language, recorded, transcribed and translated into English. Thematic analysis was performed to analyse the data as the transcripts were coded, the categories identified and the themes generated. The conceptual analysis of HRQoL was carried out after the review of the Western literature on the quality of life (QoL) conceptual models and the measuring instruments used in renal literature. Systematic review of the Saudi HRQoL literature was performed as well to understand the meaning and methods of measurement of the concept of HRQoL. The conceptual analysis of HRQoL revealed that the concept is poorly defined in the Saudi literature; its measurement was based on instruments that are not culturally-adapted. Hence the findings are subjected to questions of validity and reliability. The QoL conceptual models have been developing in the Western literature as well as measuring instruments for patients with renal failure. However, the adoption of these models or instruments is critical due to social, cultural and religious variations between Saudi Arabia and the Western societies. Seven themes defining HRQoL emerged from the qualitative data; these reflected the subjectivity of the concept. The domains of HRQoL were the physiological, social, psychological, religious and vocational domains. Each of those domains was defined by determinants that affect other domains and the overall HRQoL. These were synthesised into a single definition, which incorporated all five domains. A model of HRQoL of patients undergoing haemodialysis in Saudi Arabia was developed explaining the relationship between the key domains and HRQoL. Healthcare services were discussed as a factor that affects the health status of patients and plays an indirect role in the life quality of this patient group. Hence it was considered as a factor rather than a domain. This study, including the conceptual analysis and the empirical study, illustrates that the concept of HRQoL is highly individual and is affected by the views of individuals living in a specific culture. Additionally, it is affected by the social, cultural and religious backgrounds of those individuals. The conceptualisation of HRQoL in this study was almost similar to the Western conceptualisation, however, the relationships between the key domains of HRQoL and their determinants differed. The social and religious domains were highly influenced by the Arabic culture and the Islamic religion. HRQoL in patients with ESRD in the Eastern Region of Saudi Arabia has a different meaning and conceptualisation from that seen in comparable Western literature. The assessment of HRQoL of patients with renal failure and on haemodialysis in Saudi Arabia requires a culturally-adapted instrument. This would ensure valid and reliable results that could be used in decision-making and the planning of care.

Submitted by Nadir Basilio (nadirsb@uninove.br) on 2018-07-18T21:07:30Z No. of bitstreams: 1 Anderson Soares Silva.pdf: 1994888 bytes, checksum: 0d17fc79f295d4a5c192dd3d298390d0 (MD5) / Made available in DSpace on 2018-07-18T21:07:30Z (GMT). No. of bitstreams: 1 Anderson Soares Silva.pdf: 1994888 bytes, checksum: 0d17fc79f295d4a5c192dd3d298390d0 (MD5) Previous issue date: 2017-10-27 / Introduction: Currently, end stage renal disease (ESRD) is one of the most serious public health problems, becoming a global epidemic. It is also known that the amount of nocturnal rostral fluid displacement from the lower limbs is related to increased neck circumference and the severity of obstructive sleep apnea (OSA) in patients with end-stage renal disease. Method: A cross-sectional study was carried out to verify the degree of upper airway collapsibility in patients with ESRD. Negative expiratory pressure and baseline nocturnal polygraphy will be performed before and after the hemodialysis session. Results: There was a significant difference in pre and post hemodialysis in the various apnea / hypopnea index, neck circumference, waist circumference, percentage of exhaled flow at the time of 0.2 seconds (V0.2) sitting and lying down. The VO, 2 sitting pre-hemodialysis presented a correlation with the pre-AHI (p = 0.047, r = -0.953) and post hemodialysis (p = 0.010; r = -0.990). In addition, V0.2 after hemodialysis showed a correlation with AHI after hemodialysis (p = 0.029; r = -0.971). Discussion: The NEP test was promising for clinical use, since it has a rapid application and presents information relevant to the collapse of the airway of patients with suspected OSA. / Introdução: Atualmente, a doença renal em estagio terminal (DRET) é um dos mais sérios problemas de saúde pública, tornando-se uma epidemia global. Sabe-se também que a quantidade de deslocamento do fluido rostral durante a noite, proveniente dos membros inferiores, está relacionada ao aumento da circunferência do pescoço e a gravidade da apnéia obstrutiva do sono (AOS) em pacientes com doença renal em estágio final. Método: Foi proposto um estudo clinico transversal com o objetivo de verificar o grau de colapsabilidade da via aérea superior em pacientes com DRET. Foi realizado o teste da pressão expiratória negativa (NEP) e a poligrafia basal noturna domiciliar antes e após a sessão de hemodiálise. Resultados: Houve diferença significativa em pré e pós hemodiálise nas váriaveis índice de apneia / hipopneia, circunferência de pescoço, circunferência de cintura, porcentagem de fluxo exalada no momento de 0,2 segundos (V0,2) sentado e deitado. O VO,2 sentado pré hemodiálise apresentou correlaçao com o IAH pré (p= 0,047; r= -0,953) e pós hemodiálise (p=0,010; r= -0,990). Além disso, o V0,2 pós hemodiálise apresentou correlação com IAH pós hemodiálise (p=0,029; r= -0,971). Discussão: O teste da NEP foi promissor para o uso clínico, uma vez que ele possui uma aplicação rápida e apresenta informações relevantes para a colapso da via aérea dos pacientes com suspeita de AOS.

El plan de negocio pertenece al sector salud y consiste en la creación del primer Centro especializado en Hemodiálisis con terapia de la risa en la ciudad de Lima. En la región de Lima existe una demanda insatisfecha de pacientes con Enfermedad Renal Crónica Terminal del Análisis de la situación renal en el Perú (2015) se puede concluir que existe un exceso de demanda de pacientes en EsSalud, con un sobredimensionamiento de un 33,9% y un déficit de cobertura en el Ministerio de Salud en un 79%. Es importante detallar que se han visto estudios sobre los beneficios de la terapia de la risa en pacientes con Enfermedades Crónicas Terminales y familiares respecto a su calidad de vida. Por ello, se propone la creación del primer Centro especializado en Hemodiálisis con terapia de la risa en la ciudad de Lima llamado “Centro de Hemodiálisis NefroClown S.A.”. Siendo el slogan de nuestro centro “…Donde la salud comienza con una sonrisa”. Y el logotipo está representado por la imagen de dos riñones con una nariz de clown, cuya finalidad será realizar tratamientos de Hemodiálisis con terapia de la risa a pacientes con Enfermedad Renal Crónica Terminal asegurados del Ministerio de Salud, EsSalud y privados, contribuyendo a atender la actual demanda. Los responsables del Centro están conformados por una junta general de accionistas, una gerencia y un directorio. La estrategia del negocio es de liderazgo en costos, centrándonos en el desarrollo de los procesos necesarios para brindar el servicio de hemodiálisis. La Viabilidad Financiera del Proyecto ha sido estructurada de 5 años (2021 – 2025). La inversión total proyectada para el desarrollo del proyecto es de S/.1 287,880.69. El Valor Actual Neto positivo nos indica que el proyecto nos genera beneficios. Por otro lado, nos ofrece una tasa interna de retorno de 176.62%, demostrando que la rentabilidad del proyecto es superior al mínimo aceptable. Por lo descrito el proyecto resulta financieramente viable y rentable. / The business plan belongs to the health sector and consists of the creation of the first Center specialized in Hemodialysis with laughter therapy in the city of Lima. In the Lima region there is an unsatisfied demand for patients with Terminal Chronic Kidney Disease From the Analysis of the kidney situation in Peru (2015) it can be concluded that there is an excess demand for patients in EsSalud, with an oversizing of 33.9 % and a deficit of coverage in the Ministry of Health in 79%. It is important to detail that studies have been seen on the benefits of laughter therapy in patients with Terminal Chronic Diseases and their families regarding their quality of life. For this reason, the creation of the first Center specialized in Hemodialysis with laughter therapy is proposed in the city of Lima called "Center de Hemodialysis NefroClown S.A.". Being the slogan of our center “… Where health begins with a smile”. And the logo is represented by the image of two kidneys with a clown nose, the purpose of which will be to carry out Hemodialysis treatments with laughter therapy to patients with Terminal Chronic Kidney Disease insured by the Ministry of Health, EsSalud and private companies, helping to attend to the current demand. Those responsible for the Center are made up of a general meeting of shareholders, a management and a board of directors. The business strategy is one of cost leadership, focusing on the development of the processes necessary to provide the hemodialysis service. The Financial Viability of the Project has been structured for 5 years (2021 - 2025). The total investment projected for the development of the project is S / .1 287,880.69. The positive Net Present Value indicates that the project generates benefits for us. On the other hand, it offers us an internal rate of return of 176.62%, showing that the profitability of the project is higher than the acceptable minimum. As described, the project is financially viable and profitable. / Trabajo de investigación

Einleitung: Vor mehr als 3 Jahrzehnten zeigten mehrere Untersuchungen, dass bei Patienten mit terminaler Niereninsuffizienz in bis zu 60% der Fälle eine mit dem Sekretin-Pancreozymin-Test (SPT) oder eine seiner Modifikationen nachweisbare Pankreasinsuffizienz (EPI) vorliegt. Da der SPT weltweit kaum noch zur Verfügung steht, wurde untersucht, ob und wie häufig mit der fäkalen Elastase-1- Messungeine EPI bei Hämodialyse-(HD)-Patienten nachweisbar ist. Methodik: Die Studie umfasste 50 HD-Patienten, bei denen die fäkale Elastase-1 mit zwei verschiedenen Methoden (Bioserv Diagnostics und Schebo-Biotech) bestimmt und außerdem das Stuhlgewicht und der Stuhlfettgehalt ermittelt wurden. Bei keinem der Patienten bestand in der Vorgeschichte eine akute oder chronische Pankreatitis bzw., eine chronisch-entzündliche Darmerkrankung. Ebenso lag kein Zustand nach Teil- Gastrektomie bzw., Teil-Dünndarmresektion vor. Ergebnis: Eine EPI leichten Grades (100 - 200 µg/g Stuhl) wurde bei 5 (10%) Patienten festgestellt. Sie korrelierte nicht mit Alter, Geschlecht, nephrologischer Grunderkrankung und HD-Dauer. In keinem Fall war eine Pankreasenzymsubstitution (< 100 µg/g Stuhl) erforderlich. Bei 9 (18%) Patienten lag eine leichte Diarrhoe (200 - 300 g/Tag) vor, bei 10 (20%) eine Steatorrhoe leichten Grades (7 - 15 g Fett/ Tag). Die Steatorrhoe war bei 6 (67%) bzw. 5 (50%) dieser Patienten durch die gleichzeitige Gabe eines Phosphatbinders (Gallensäurebindung) erklärbar. Schlussfolgerung: Anders als früher scheint jetzt eine EPI ein seltenes und klinisch nicht bedeutsames Problem bei HD-Patienten zu sein. Dies ist möglicherweise dadurch zu erklären, dass jetzt ausreichend Dialyseplätze zur Verfügung stehen und Patienten mit terminaler Niereninsuffizienz in noch gutem Allgemein- und Ernährungszustand in ein Dialyseprogramm aufgenommen werden können. Ob die ebenfalls seltene, aber zunächst klinisch nicht erklärbare Diarrhoe/Steatorrhoe klinisch von Bedutung (Osteoporose?) ist, müssen weitere Untersuchungen zeigen.

Abnormalities of lipid metabolism are considered risk factors for cardiovascular, metabolic, nephrologic diseases amd some malignancies, as well. Nowadays, a lot of effort is devoted to study new risk factors and surrogate markers of conditions mentioned above to improve their prognosis and decrease mortality. The aim of this thesis was to provide a comprehensive survey of lipid metabolism, characteristics of different lipid compounds in health and diseases and of possibilities of utilization of selected lipid parameters in the diagnostics of pathological conditions listed above. Selected lioid parameters were observed in several studies, focused on specific pathological conditions. Besides conventional lipid analytes, the composition of fatty acids in plasma lipid pools was studied in healthy controls, and in the patients suffering from metabolic syndrome, chronic pancreatitis, and pancreatic cancer, as well. Markers of an oxidative stress (oxidatively modified LDL particles and conjugated dienes in precipitated LDL) were assessed in healthy controls, patients with metabolic syndrome, chronic pancreatitis, pancreatic cancer, and in the patients with different concentrations of plasma apoB-48, too. LDL particles subfraction were investigated in healthy controls, in the patients with different...

RATIONALE & OBJECTIVE: Patients receiving maintenance dialysis have higher mortality after primary percutaneous coronary intervention (pPCI) than patients not receiving dialysis. Whether pPCI confers a benefit to patients receiving dialysis that is similar to that which occurs in lower-risk groups remains unknown. We compared the effect of pPCI on in-hospital outcomes among patients hospitalized for ST-elevation myocardial infarction (STEMI) and receiving maintenance dialysis with the effect among patients hospitalized for STEMI but not receiving dialysis. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: We used the National Inpatient Sample (2016-2018) and included all adult hospitalizations with a primary diagnosis of STEMI. PREDICTORS: Primary exposure was PCI. Confounders included dialysis status, demographics, insurance, household income, comorbidities, and the elective nature of the admission. OUTCOME: In-hospital mortality, stroke, acute kidney injury, new dialysis requirement, vascular complications, gastrointestinal bleeding, blood transfusion, mechanical ventilation, palliative care, and discharge destination. ANALYTICAL APPROACH: The average treatment effect (ATE) of pPCI was estimated using propensity score matching independently within the group receiving dialysis and the group not receiving dialysis to explore whether the effect is modified by dialysis status. Additionally, the average marginal effect (AME) was calculated accounting for the clustering within hospitals. RESULTS: Among hospitalizations, 4,220 (1.07%) out of 413,500 were for patients receiving dialysis. The dialysis cohort was older (65.2 ± 12.2 vs 63.4 ± 13.1, P < 0.001), had a higher proportion of women (42.4% vs 30.6%, P < 0.001) and more comorbidities, and had a lower proportion of White patients (41.1% vs 71.7%, P < 0.001). Patients receiving dialysis were less likely to undergo angiography (73.1% vs 85.4%, P < 0.001) or pPCI (57.5% vs 79.8%, P < 0.001). Primary PCI was associated with lower mortality in patients receiving dialysis (15.7% vs 27.1%, P < 0.001) as well as in those who were not (5.0% vs 17.4%, P < 0.001). The ATE on mortality did not differ significantly (P interaction = 0.9) between patients receiving dialysis (-8.6% [95% CI, -15.6% to -1.6%], P = 0.02) and those who were not (-8.2% [95% CI, -8.8% to -7.5%], P < 0.001). The AME method showed similar results among patients receiving dialysis (-9.4% [95% CI, -14.8% to -4.0%], P < 0.001) and those who were not (-7.9% [95% CI, -8.5% to -7.4%], P < 0.001) (P interaction = 0.6). Both the ATE and AME were comparable for other in-hospital outcomes in both groups. LIMITATIONS: Administrative data, lack of pharmacotherapy and long-term outcome data, and residual confounding. CONCLUSIONS: Compared with conservative management, pPCI for STEMI was associated with comparable reductions in short-term mortality among patients irrespective of their receipt of maintenance dialysis.

健康相關生活品質越來越重視病人主觀的感受，然而將這個部分納入測量之後，許多研究結果卻出現殘疾悖論(disability paradox)的現象，也就是重度疾病病人的自評生活品質並不比程度輕微或甚至健康的人差。反應轉移理論認為，造成這個現象的原因在於個人的自評生活品質會受到個體對於生活品質定義的改變（重新構念）、內在測量尺度標準的改變（重新校準）、以及價值的改變（重新權重）的影響，到目前為止，反應轉移尚未發展出合適的測量工具。 SEIQoL-DW (Schedule for the Evaluation of Individual Quality of Life- direct weighting)做為一個生活品質測量個人化的代表，其評估分成三個步驟，分別是提名重要的生活領域、評估提名領域的滿意程度、以及評估提名領域的相對權重，許多研究者嘗試用SEIQoL-DW在兩點間的領域變化做為重新構念，權重變化做為重新權重，重新校準則需要搭配then test來測量，then test是在第二個測量點時邀請受試重新對第一個時間點的提名領域進行評估，然而這三個成分指標的操作型定義不一，then test也有使用上的不便，同時過去這些指標對生活品質的效用檢驗也都未達顯著。本研究分認為，若能解決上述的問題，將有助於解釋殘疾悖論，同時可以區辨不同類別病人的反應轉移模式，並運用在臨床來幫助病人進行調適。 本研究以立意取樣招募3期以上之慢性腎臟病患者、以及血液透析、腹膜透析未滿一年以上之三組病患共85名，除了背景和臨床資料外，在間隔三個月的兩點分別填寫SEIQoL-DW、ideal scale（評估期待）、生活滿意問卷、正負向情緒問卷，並在後測時填寫then test。研究結果顯示，三組病人的生活品質符合殘疾悖論，並無顯著差別。重新構念、重新校準、和重新權重當中，僅重新校準有助於生活品質的提升，並能夠顯著解釋生活品質的改變。 對腎臟病患者來說，期待越高，生活品質提升得越多，進一步的分析顯示，受試會捨棄相對權重較低的領域，新提名領域的滿意程度、期待、和相對權重都顯著高於捨棄的舊領域，這可以作為臨床上協助病人調適的策略。雖然then test的結果顯著，但實證結果和理論卻相當混亂，尚待未來研究釐清。 / Health-related quality of life (HRQoL) is increasingly recognized as being subjective, which emphasized patient-reported outcomes. Many HRQoL studies reported that people with serious illness perceived no less quality of life (QoL) than those without such illness. This phenomenon is labeled as disability paradox. Response shift theory provides an explanation for it and refers to a change in the meaning of one’s self-evaluation of QoL as a result of changes in internal standards (recalibration), values (reprioritization), and reconceptualization of QoL. It is these changes that will influenced perceived QoL. Current methods to detect Response Shift are still evolving. SEIQoL-DW (Schedule for the Evaluation of Individual Quality of Life- direct weighting) is one of individualized QoL instruments and measures three elements of QoL, including five important aspects of life, current satisfaction with each aspect, and relative importance of each aspect. Many researchers tried to use SEIQoL-DW to detect response shift. Changes in the content of aspects of life between two time points reflect reconceptualization. Changes in the relative weighting between two time points reflect reprioritization. Recalibration is measured by then test, which is a method by asking respondents at time two to provide a renewed rating of their aspects of life given at time one. However, there are no consensus operational definition of indices of reconceptualization , reprioritization, and recalibration. The examination between indices and improvements in QoL was not significant, either. Besides, then test with SEIQoL-DW has a disadvantage when aspects nominated between time one and two are different. This study tried to resolve issues above. If these issues are resolved, disability paradox will be explained. Response Shift will possibly differentiate patients of various disease, and provide ideas to help patients adjust to illness. 85 patients were recruited, including those with renal disease stage 3-5, and those undergoing hemodialysis or peritoneal dialysis within one year. All patients completed SEIQoL-DW, ideal scale, Satisfaction with Life Scale, the Positive And Negative Affect Scale at time one and three months after , except questionnaire on personal background and biological information (at time one) and then test (at time two). Results indicated that the QoLs of these three groups of patients showed no different, which confirmed disability paradox. Only recalibration showed helpful. Regression analyses also showed that recalibration indices were better predictors in QoLs. For End-stage Renal Disease patients, higher expectation suggested higher QoL improvement. Further analysis showed that patients would abandon lower-weighted aspect of life. Compared to the abandoned aspects, higher satisfaction, expectation and weighting were seen in new-nominated aspect. This finding could be useful in helping patients adjust. Although then test also reached significance, evidences was contradicted to its prediction. More research is needed in the future.

Thèse numérisée par la Division de la gestion de documents et des archives de l'Université de Montréal.

On estime que des calcifications vasculaires (CVs) sont présentes chez 60% des patients avec insuffisance rénale terminale (IRT) et que ces CVs contribuent à l’augmentation de la maladie cardiovasculaire chez ces patients. La maladie cardiovasculaire est la première cause de mortalité chez les patients en IRT. La transplantation rénale est le traitement de choix en IRT mais peut être contre-indiquée pour des raisons chirurgicales liées au CVs ou en raison d’un risque de complications cardiovasculaires postopératoires trop élevé associé à la présence de CVs sévères. Il est donc primordial de déterminer quels facteurs sont associés à la présence de CVs qui rendraient le patient non-éligible pour une greffe rénale. En particulier il serait intéressant de vérifier si un produit phosphocalcique élevé est un facteur de risque de non-éligibilité pour une greffe rénale en raison de CVs. L’étude actuelle utilise la base de données de transplantation du CHUM. C’est une étude de type cas-témoins avec une cohorte de 1472 patients de 1992 à 2009. Les cas sont les patients jugés non-éligibles pour une transplantation rénale en raison de la présence de CVs sévères. Les contrôles sont les patients jugés éligibles: 80 cas et 80 contrôles ont été inclus. Les facteurs de risque qui ont été identifiés pour la non-éligibilité en raison de CVs sont le diabète (adjusted Odds Ratio (OR): 5.55 (1.98 - 15.59)), l’âge (OR: 1.14 (1.09 – 1.2)), le tabagisme (OR: 9.51 (2.55 – 35.51)) et la dialyse (OR: 6.83 (2.33 – 20.05)). La durée de la dialyse a aussi été identifiée comme facteur de risque (OR : 8.61 (2.34-31.68) pour une durée de dialyse de 8 mois et plus, OR : 4.57 (1.42-14.65) pour une durée de dialyse de 1 à 7 mois. Bien que significatif en univarié, le produit phosphocalcique n’a pas été identifié comme facteur de risque significatif dans les analyses multivariées. En conclusion, cette étude montre que le produit phosphocalcique pourrait être un marqueur d’une insuffisance rénale prolongée et moins bien contrôlée plutôt qu’un facteur de risque de calcifications rendant le patient non-éligible à la greffe. De plus cette étude met de l’emphase sur la notion qu’il est primordial 1) de référer précocement les patients à haut risque de CVs vers un centre de transplantation pour une évaluation et 2) de prendre en charge agressivement l’arrêt du tabac chez tous les patients qui sont potentiellement éligibles pour une transplantation. / Background: Vascular calcifications (VCs) are observed in 60% of patients with end-stage renal disease (ESRD) and are thought to increase the risk of cardiovascular disease and mortality. The purpose of this study was to identify the risk factors associated with VCs preventing the eligibility for a kidney transplant (KTx). Methods: We conducted a case control study in a cohort of 1472 adults evaluated for KTx from 1992 to 2009. Cases were defined as patients who were refused for KTx because of severe VCs and controls as patients who were accepted for KTx. Results: The study included 80 cases and 80 controls. In multivariate models, the strongest risk factors for VCs preventing eligibility for KTx were diabetes (adjusted Odds Ratio (OR): 5.55 (1.98 - 15.59)), age (OR: 1.14 (1.09 – 1.2)), smoking (OR: 9.51 (2.55 – 35.51)) and dialysis (OR: 6.83 (2.33 – 20.05)). Although significant in univariate analyses, the phosphocalcic product (CaxP) was not a significant predictor in multivariate models. Conclusion: This study suggests that the CaxP could be a marker of prolonged ESRD rather than a risk factor of VCs preventing eligibility for KTx and emphasizes the importance of early referral for transplantation and aggressive smoking cessation management for all patients with ESRD.

The course of endstage renal disease (ESRD) and receiving hemodialysis (HD) treatment is complex and filled with uncertainty. Part of this illness experience includes making end-of-life (EOL) care decisions. Many families are unprepared to make such decisions. Advance care planning (ACP) creates an excellent context for laying the groundwork for these emotionally charged conversations. Hemodialysis patients, their families and healthcare providers (HCPs) are in a unique position to begin the ACP process early in the illness trajectory, revisiting it when the patient’s health status, prognosis and treatment modality changes. To date, little research has focused directly on how families experience ACP conversations in the context of ESRD or HD. The purpose of this study was to explore family members’ experiences of participating in a facilitated ACP conversation with the HD patient. This approach recognizes and privileges the family’s role in the illness trajectory of ESRD and validates that they too are HCPs’ clients. Five families, consisting of the HD patient and one family member, who went through the ACP process were interviewed along with an ACP facilitator from the nephrology program. This focused ethnographic study applied the theoretical perspective of postmodernist critical theory to derive and analyze data from in-depth semi-structured interviews. Findings revealed a detailed description of the ACP process that included timing, readiness to acknowledge the potentiality of death, facing mortality, and finding meaning in the illness experience. As families started to deconstruct their experiences, they shared stories of communication breakdown, highlighting the complexities of their relationships with HCPs. Understanding the factors that potentially contribute to HD patients’, their families’ and the renal staff’s discomfort with death were analyzed. The study findings provide important direction for HCPs about how families make ACP decisions, how they perceive the ACP process, and what they identify as their EOL care needs and wishes. Failure to implement ACP as part of an EOL care program means that death will continue to be denied and clients’ EOL care needs will remain un-addressed. In order for ACP to be effective on HD units, sustainable resources are essential for patients, their families and HCPs.