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.
Background: Self-rated health (SRH) and the surprise question (SQ) capture perceptions of health and are independent risk factors for poor outcomes. Little is known about their association with physiologic and functional decline.
Objective: Determine the association of SRH and SQ with frailty and functional status in older adults with chronic kidney disease (CKD) and their utility as screening tools.
Design: Prospective cohort study.
Setting/Subjects: Two hundred seventy-two adults, age =60 years, with advanced CKD seen in nephrology clinic.
Measurements: Patients completed SRH and were evaluated for frailty (Fried criteria and Clinical Frailty Scale [CFS]) and functional status (Katz and Lawton indices of activities of daily living [ADLs] and instrumental ADLs [iADLs]). Providers completed the SQ. Correlations were evaluated using Spearman's rho.
Results: Fifteen percent of patients were frail, 8% had =1 ADL deficit, and 29% had =1 iADL deficit. SRH and SQ were moderately correlated with frailty and iADLs. A SRH of excellent, very good, or good was predictive of nonfrail status (Fried negative predictive value [NPV]: 0.92; CFS NPV: 0.92) and preserved ADL function (NPV for =1 deficit: 0.96). A SQ response of 5, 4, or 3 (i.e., surprised) was predictive of nonfrail status and preserved ADL function (CFS NPV: 0.90; ADL =1 deficit NPV: 0.95). A SQ response of 1 or 2 had a positive predictive value of 0.64 for =1 iADL deficit.
Conclusions: Subjective health measures may be useful screening tools for frailty and functional status.
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: Economic evaluations of advance care planning (ACP) in people with chronic kidney disease are scarce. However, past studies suggest ACP may reduce healthcare costs in other settings. We aimed to examine hospital costs and outcomes of a nurse-led ACP intervention compared with usual care in the last 12 months of life for older people with end-stage kidney disease managed with haemodialysis.
METHODS: We simulated the natural history of decedents on dialysis, using hospital data, and modelled the effect of nurse-led ACP on end-of-life care. Outcomes were assessed in terms of patients' end-of-life treatment preferences being met or not, and costs included all hospital-based care. Model inputs were obtained from a prospective ACP cohort study among dialysis patients; renal registries and the published literature. Cost-effectiveness of ACP was assessed by calculating an incremental cost-effectiveness ratio (ICER), expressed in dollars per additional case of end-of-life preferences being met. Robustness of model results was tested through sensitivity analyses.
RESULTS: The mean cost of ACP was AUD$519 per patient. The mean hospital costs of care in last 12 months of life were $100,579 for those who received ACP versus $87,282 for those who did not. The proportion of patients in the model who received end-of-life care according to their preferences was higher in the ACP group compared with usual care (68% vs. 24%). The incremental cost per additional case of end-of-life preferences being met was $28,421. The greatest influence on the cost-effectiveness of ACP was the probability of dying in hospital following dialysis withdrawal, and costs of acute care.
CONCLUSION: Our model suggests nurse-led ACP leads to receipt of patient preferences for end-of-life care, but at an increased cost.
BACKGROUND: The population of end-stage renal failure (ESRF) receiving dialysis treatment is increasing worldwide. For most patients with ESRF, dialysis can extend their life. However, treatment can be demanding and time-consuming. Despite dialysis treatment, many patients continue to experience various sufferings.
METHODS: A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering of ESRF patients on maintenance dialysis in Malaysia. The results were thematically analyzed.
RESULTS: Nineteen ESRF patients were interviewed. The themes and subthemes were: (I) physical suffering-physical symptoms and functional limitations, (II) psychological suffering-the emotions and thoughts of suffering, (III) social suffering-healthcare-related suffering and burdening of others and (IV) spiritual suffering-the queries of suffering.
CONCLUSIONS: These findings may help healthcare professionals to fill in the gaps in the delivery of best renal palliative care.
BACKGROUND: End-stage renal disease (ESRD) is a life-limiting condition that is often complicated by acute abdominal emergency. Palliative care (PC) has been shown to improve the quality of life in patients with serious illness and yet is underutilized. We hypothesize that ESRD patients with abdominal emergency have high unmet PC needs.
OBJECTIVE: To characterize the outcomes of ESRD patients with acute surgical abdomen, define PC utilization patterns, and identify areas of unmet PC needs.
DESIGN: Retrospective study querying the National Inpatient Sample database (2009-2013).
SETTING AND SUBJECTS: Subjects were identified using ICD-9 codes for those aged =50 with preexisting diagnosis of ESRD with an acute abdominal emergency diagnosis of gastrointestinal perforation, obstruction, or ischemia.
MEASUREMENTS: Outcomes included PC rate, in-hospital mortality, discharge disposition, and intensity of care. Multivariable logistic regression analysis was used to identify predictors of PC.
RESULTS: A total of 9363 patients met the inclusion criteria; 24% underwent surgery, 16% died in hospital, and 43% were discharged to dependent living. Among in-hospital deaths, 23% received PC. Only 4% of survivors with dependent discharge received PC. Surgical mortality was 26%. PC was less utilized in surgical patients than nonsurgical patients. PC was associated with shorter hospital stay. Predictors of PC included increasing age, severity of underlying illness, white race, teaching hospitals, and the Western region.
CONCLUSIONS: Patients with ESRD admitted for acute abdominal emergency have high risk for mortality and functional dependence. Despite this, few receive PC and have a high utilization of nonbeneficial life support at the end of life.
Many patients with chronic kidney disease (CKD) and end-stage renal disease have unmet palliative care (PC) needs. Physical and emotional symptoms are common. Some, like uremia and fluid overload, improve with dialysis, but the increasing age of patients initiating renal replacement therapy leaves many untreatable comorbidities like dementia and frailty to negatively impact quality of life. Written by nephrologists and PC clinicians, this article will help PC providers to have a richer understanding of kidney disease-related symptom burden, disease trajectory, prognosis, and barriers to hospice enrollment for patients with CKD and end-stage renal disease.
A 3-month-old boy with failure to thrive was referred to a nephrology clinic after a diagnostic workup for failure to thrive revealed a serum urea nitrogen level of 95 mg/dL and creatinine level of 3.6 mg/dL. A renal ultrasound revealed marked bilateral hydronephrosis with little remaining renal cortex in either kidney. A voiding cystourethrogram revealed evidence of posterior urethral valves. The child had no evident comorbidities. Fulguration of the valves was successfully performed but did not lead to improvement in kidney function. The nephrologists recommended the initiation of dialysis with the hope that the child would be able to receive a kidney transplant in the future. After careful consideration, the family stated that they did not want this child to suffer with a lifetime of dialysis and transplant care. They were also concerned about the impact of this child's illness on their other 2 children and their family. They requested that their son be provided with palliative care only. Experts in nephrology, bioethics, and critical care discuss the ethical issues raised by this parental request.
BACKGROUND: Little is known about patterns of end-of-life care for patients with advanced kidney disease not treated with maintenance dialysis.
STUDY DESIGN: Case series.
SETTING & PARTICIPANTS: A sample of 14,071 patients with sustained estimated glomerular filtration rates < 15mL/min/1.73m2 treated in the US Veterans Affairs health care system who died during 2000 to 2011. Before death, 12,756 of these patients had been treated with dialysis, 503 had been discussing and/or preparing for dialysis therapy, and for 812, there had been a decision not to pursue dialysis therapy.
OUTCOMES: Hospitalization and receipt of an intensive procedure during the final month of life, in-hospital death, and palliative care consultation and hospice enrollment before death.
RESULTS: Compared with decedents treated with dialysis, those for whom a decision not to pursue dialysis therapy had been made were less often hospitalized (57.3% vs 76.8%; OR, 0.40 [95% CI, 0.34-0.46]), less often the recipient of an intensive procedure (3.5% vs 24.6%; OR, 0.15 [95% CI, 0.10-0.22]), more often the recipient of a palliative care consultation (52.6% vs 21.6%; OR, 4.19 [95% CI, 3.58-4.90]), more often used hospice services (38.7% vs 18.2%; OR, 3.32 [95% CI, 2.83-3.89]), and died less frequently in a hospital (41.4% vs 57.3%; OR, 0.78 [95% CI, 0.74-0.82]). Hospitalization (55.5%; OR, 0.39 [95% CI, 0.32-0.46]), receipt of an intensive procedure (13.7%; OR, 0.60 [95% CI, 0.46-0.77]), and in-hospital death (39.0%; OR, 0.47 [95% CI, 0.39-0.56]) were also less common among decedents who had been discussing and/or preparing for dialysis therapy, but their use of palliative care and hospice services was similar.
LIMITATIONS: Findings may not be generalizable to groups not well represented in the Veterans Affairs health care system.
CONCLUSIONS: Among decedents, patients not treated with dialysis before death received less intensive patterns of end-of-life care than those treated with dialysis. Decedents for whom there had been a decision not to pursue dialysis therapy before death were more likely to receive palliative care and hospice.
BACKGROUND AND OBJECTIVES: Prognostic uncertainty is one barrier that impedes providers in engaging patients with CKD in shared decision making and advance care planning. The surprise question has been shown to identify patients at increased risk of dying.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: In our prospective observational study, 488 patients =60 years of age with CKD stage 4 or 5 were enrolled. Binary surprise question (i.e., “Would you be surprised if this patient died in the next 12 months?”) responses were recorded, and dialysis planning preferences, presence of advance care planning documentation, and care preceding death were abstracted.
RESULTS: The median patient age was 71 (65-77) years old. Providers responded no and yes to the surprise question for 171 (35%) and 317 (65%) patients, respectively. Median follow-up was 1.9 (1.5-2.1) years, during which 18% of patients died (33% of surprise question no, 10% of surprise question yes; P<0.001). In patients with a known RRT preference (58%), 13% of surprise question no participants had a preference for conservative management (versus 2% of yes counterparts; P<0.001). A medical order (i.e., physician order for life-sustaining treatment) was documented in 13% of surprise question no patients versus 5% of yes patients (P=0.004). Among surprise question no decedents, 41% died at home or hospice, 38% used hospice services, and 54% were hospitalized in the month before death. In surprise question yes decedents, 39% died at home or hospice (P=0.90 versus no), 26% used hospice services (P=0.50 versus no), and 67% were hospitalized in the month before death (P=0.40 versus surprise question no).
CONCLUSIONS: Nephrologists' prognostic perceptions were associated with modest changes in care, highlighting a critical gap in conservative management discussions, advance care planning, and end of life care among older adults with CKD stages 4 and 5 and high-risk clinical characteristics.
BACKGROUND: Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, it can be an emotionally charged process for patients with kidney disease and their caregivers. This study aimed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward ACP.
STUDY DESIGN: Qualitative study.
SETTING & PARTICIPANTS: Patients with ESRD (n=24) and their caregivers (n=15) aged 36 to 91 years at various stages of ACP ("not commenced," "in progress," or "completed") from 3 renal services.
METHODOLOGY: Semistructured interviews.
ANALYTICAL APPROACH: Transcripts were analyzed using thematic analysis.
RESULTS: 5 major themes were identified: articulating core values (avoiding futile and undignified treatment, reevaluating terms of dialysis, framing a life worth living, and refusing to be a burden), confronting conversations (signifying death and defeat, accepting inevitable death, and alleviating existential tension), negotiating mutual understanding (broaching taboos and assisting conflicted caregivers), challenging patient autonomy (family pressures to continue dialysis, grief diminishing caregivers' capacity, and leveraging support), and decisional disempowerment (lacking medical transparency and disappointment with clinical disinterest).
LIMITATIONS: Only English-speaking patients/caregivers participated in the interview.
CONCLUSIONS: ACP provides patients with ESRD and their caregivers a conduit for accepting and planning for impending death and to express treatment preferences based on self-dignity and value of living. However, ACP can be considered taboo, may require caregivers to overcome personal and decisional conflict, and may be complex if patients and caregivers are unable to accept the reality of the patient's illness. We suggest that ACP facilitators and clinicians make ACP more acceptable and less confrontational to patients and caregivers and that strategies be put in place to support caregivers who may be experiencing overwhelming grief or who have conflicting goals, particularly when they are called on to make end-of-life decisions.
Despite a growing body of literature suggesting that dialysis does not confer morbidity or mortality benefits for all patients with chronic kidney failure, the initiation and continuation of dialysis therapy in patients with poor prognosis is commonplace. Our goal was to elicit nephrologists’ perspectives on factors that affect decision making regarding end-stage renal disease. Semistructured, individual, qualitative interviews. Participants were purposively sampled based on age, race, sex, geographic location, and practice type. Each was asked about his or her perspectives and experiences related to foregoing and withdrawing dialysis therapy. Interviews were audiotaped, transcribed, and analyzed using narrative and thematic analysis. We conducted 59 semistructured interviews with nephrologists from the United States (n=41) and England (n=18). Most participants were 45 years or younger, men, and white. Average time since completing nephrology training was 14.2±11.6 (SD) years. Identified system-level facilitators and barriers for foregoing and withdrawing dialysis therapy stemmed from national and institutional policies and structural factors, how providers practice medicine (the culture of medicine), and beliefs and behaviors of the public (societal culture). In both countries, the predominant barriers described included lack of training in end-of-life conversations and expectations for aggressive care among non-nephrologists and the general public. Primary differences included financial incentives to dialyze in the United States and widespread outpatient conservative management programs in England. Participants’ views may not fully capture those of all American or English nephrologists. Nephrologists in the United States and England identified several system-level factors that both facilitated and interfered with decision making around foregoing and withdrawing dialysis therapy. Efforts to expand facilitators while reducing barriers could lead to care practices more in keeping with patient prognosis.
CONTEXT: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden and therefore, more knowledge about the palliative care provided close to death is needed.
OBJECTIVES: To describe symptom prevalence, relief and management during the last week of life, as well as end-of-life communication, in patients with ESKD.
METHODS: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (ICD-10-SE; N18.5 or N18.9), during 2011 and 2012 were selected.
RESULTS: 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44% respectively were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/in-patient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families.
CONCLUSION: Even if death is expected, the majority of patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.
CONTEXT: A diagnosis of advanced chronic kidney disease (CKD), or end stage renal disease (ESRD) represents a significant life change for patients and families. Individuals often experience high symptom burden, decreased quality of life, increased health care utilization, and end-of-life care discordant with their preferences. Early integration of palliative care with standard nephrology practice in the outpatient setting has the potential to improve quality of life through provision of expert symptom management, emotional support, and facilitation of advance care planning that honors the individual's values and goals.
OBJECTIVES: This special report describes application of participatory action research (PAR) methods to develop an outpatient integrated nephrology and palliative care program.
METHODS: Stakeholder concerns were thematically analyzed to inform translation of a known successful model of outpatient kidney palliative care to a practice in a large, urban medical center in the United States.
RESULTS: Stakeholder needs and challenges to meeting these needs were identified. We uncovered a shared understanding of the clinical need for palliative care services in nephrology practice, but apprehension towards practice change. Action steps to modify the base model were created in response to stakeholder feedback.
CONCLUSIONS: The development of a model of care that provides a new approach to clinical practice requires attention to relevant stakeholder concerns. PAR is a useful methodological approach that engages stakeholders and builds partnerships. This creation of shared ownership can facilitate innovation and practice change. We synthesized stakeholder concerns to build a conceptual model for an integrated nephrology and palliative care clinical program.
Background and objectives: Despite significant morbidity and mortality associated with ESRD, these patients receive palliative care services much less often than patients with other serious illnesses, perhaps because they are perceived as having less need for such services. We compared characteristics and outcomes of hospitalized patients in the United States who had a palliative care consultation for renal disease versus other serious illnesses.
Design, setting, participants and measurements: In this observational study, we used data collected by the Palliative Care Quality Network, a national palliative care quality improvement collaborative. The 23-item Palliative Care Quality Network core dataset includes demographics, processes of care, and clinical outcomes of all hospitalized patients who received a palliative care consultation between December of 2012 and March of 2016.
Results: The cohort included 33,183 patients, of whom 1057 (3.2%) had renal disease as the primary reason for palliative care consultation. Mean age was 71.9 (SD=16.8) or 72.8 (SD=15.2) years old for those with renal disease or other illnesses, respectively. At the time of consultation, patients with renal disease or other illnesses had similarly low mean Palliative Performance Scale scores (36.0% versus 34.9%, respectively; P=0.08) and reported similar moderate to severe anxiety (14.9% versus 15.3%, respectively; P=0.90) and nausea (5.9% versus 5.9%, respectively; P>0.99). Symptoms improved similarly after consultation regardless of diagnosis (P>/=0.50), except anxiety, which improved more often among those with renal disease (92.0% versus 66.0%, respectively; P=0.002). Although change in code status was similar among patients with renal disease versus other illnesses, from over 60% full code initially to 30% full code after palliative care consultation, fewer patients with renal disease were referred to hospice than those with other illnesses (30.7% versus 37.6%, respectively; P<0.001).
Conclusions: Hospitalized patients with renal disease referred for palliative care consultation had similar palliative care needs, improved symptom management, and clarification of goals of care as those with other serious illnesses.
Un questionnaire essayant de cerner la population de patients insuffisants rénaux chroniques qui ne sont pas pris en dialyse a été envoyé à 860 néphrologues, plus particulièrement à ceux travaillant dans des centres de dialyse chronique. Ce questionnaire comportait trois grandes parties : tout d'abord, pourquoi les patients sont récusés ; ensuite, les acteurs de la décision ; et enfin, la prise en charge de ces patients. L'article présente brièvement les résultats et le questionnaire.
Dans le contexte des soins palliatifs adaptés à l'insuffisance rénale chronique terminale, les auteurs définissent l'advance care planning. Ils réfléchissent ensuite comment ce concept anglo-saxon peut se transcrire en recueil et transmission de la parole du patient en l'illustrant par une situation clinique.
Aims and objectives : To describe and elucidate the meanings of being a close relative of a severely ill family member treated with maintenance haemodialysis approaching the end of life. Background : End-stage renal disease together with comorbidities, haemodialysis treatment and high mortality rates also affects the lives of close relatives, who report burdens and impaired quality of life. To improve care, more understanding is needed of close relatives'experiences during these patients'end of life. Design : This study has a qualitative interpretative design. Methods : Fourteen retrospective qualitative interviews were conducted with close relatives (aged 48-93 years) of deceased patients who had been treated with haemodialysis. The interview text was interpreted using a phenomenological hermeneutical method in three phases. Results : The findings of the structural analysis were formulated as six themes : Striving to be supportive and helpful without doing harm to the ill person's self ; Needing increasing strength and support ; Balancing the will to help with one's own ongoing life ; Increasing responsibility involving dilemmas ; Striving for a good life together in the present and Living with awareness of death. Conclusions : Close relatives strive for balance and well-being accompanying their ill family member through the end of life. They are facing moral dilemmas and growing demands as their responsibility increases with the deterioration of their family member. Support from and interaction with the healthcare professionals is then of significance. Relevance to clinical practice : Findings challenge healthcare professionals in haemodialysis settings to identify close relatives'individual resources and needs towards the patients'end of life. Healthcare professionals in haemodialysis settings need to offer close relatives opportunities to talk about the future and what may be expected at end of life, with or without haemodialysis. They should also contact the closest relative after the death as they may need confirmation and closure.
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Lorsque les malades atteints de pathologie chronique rénale sont en fin de vie, cela n'est pas souvent identifié par les soignants. Ils ne mettent donc pas en oeuvre de soins spécifiques. Les auteurs de cet article cherchent à comprendre pourquoi les patients souffrant de maladie chronique ont peu accès aux soins palliatifs.