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MALADIE CHRONIQUE

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Perception of palliative medicine by health care professionals at a teaching community hospital - what is the key to a "palliative attitude"?

CHEUNG, Nga Yu ; GORELIK, Anna ; MEHTA, Parag ; MUDANNAYAKE, Louis ; RAMESH, Arundati ; BHARATHAN, Thayyllathil ; GOLDENBERG, Gregory
Journal of multidisciplinary healthcare, 2019, vol.12, p. 437-443

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Thème : Soins. Cote : eD02.00

FIN VIE ; SOIN ; MALADIE CHRONIQUE ; PERSONNEL SANTE ; DEMARCHE PALLIATIVE ; CONCEPT

Background: With growing expense in chronic illness and end-of-life (EOL) care, population-based interventions are needed to reduce the health care cost and improve patients' quality of life. The authors believe that promotion of palliative medicine is one such intervention and this promotion depends on the acceptance of palliative medicine concepts by health care professionals.
Aims of the studies: Perception of palliative medicine in chronic illness and in EOL care by health care professionals was learned in two studies carried out at a teaching community hospital 14 years apart.
Participants and methods: Voluntary and anonymous surveys were randomly distributed among physicians, nurses, and social workers/case managers. Participants in the two studies presented two different groups of health care providers.
Results of the studies: Results of the two studies were essentially similar. On most of the issues, respondents' perceptions were consistent with palliative medicine concepts and confidence in palliation grew over the 14-year period. The authors call this approach a "palliative attitude." Physicians with greater experience performed better in care planning. Younger physicians were more perceptive to withdrawal of care in futile cases. Participants' religion had no influence on perception of palliative medicine. Attendance of educational activities did not influence attitudes of health care professionals. Health care providers who favored involvement of palliative care teams in patients' management were better in care planning, interpretation of the DNR consent, use of opioids at the EOL, use of intensive care, and evaluation of the disease trajectory.
Conclusion: The authors conclude that direct interaction between palliative and interdisciplinary teams in clinical practice is the key factor in the education of health care professionals, in the development of a "palliative attitude," and in the promotion of palliative medicine.

Origine : PubMed

Study protocol to investigate the efficacy of normalisation of advance care planning (ACP) for people with chronic diseases in acute and community settings - a quasi-experimental design

JEONG, Sarah ; BARRETT, Tomiko ; OHR, Se Ok ; CLEASBY, Peter ; DAVID, Michael ; CHAN, Sally ; FAIRLAMB, Helen ; DAVEY, Ryan ; SAUL, Peter
BMC health services research, 04/05/2019, vol.19, n°1, 10 p.

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Thème : Recherche - Evaluation - Méthodologie. Cote : eD15.02

COMMUNICATION ; QUESTIONNAIRE ; ENQUETE ; RECHERCHE ; ETUDE RETROSPECTIVE ; SOIN INFIRMIER ; AUSTRALIE ; PLANIFICATION ; MALADIE CHRONIQUE ; DIRECTIVE ANTICIPEE ; PRISE DECISION ; HOPITAL ; ESSAI THERAPEUTIQUE ; PROTOCOLE RECHERCHE

Background: Advanced care planning (ACP) is a process that involves thinking about what medical care one would like should individuals be seriously ill and cannot communicate decisions about treatment for themselves. The literature indicates that ACP leads to increased satisfaction from both patients and healthcare professionals. Despite the well-known benefits of ACP, it is still underutilised in Australia.
Methods: The aim of this study is to investigate the effects of normalising ACP in acute and community settings with the use of specially trained normalisation agents. This is a quasi-experimental study, involving 16 sites (8 intervention and 8 control) in two health districts in Australia. A minimum of total 288 participants will be recruited (144 intervention, 144 control). We will train four registered nurses as normalisation agents in the intervention sites, who will promote and facilitate ACP discussions with adult patients with chronic conditions in hospital and community settings. An audit of the prevalence of ACP and Advanced Care Directives (ACDs) will be conducted before and after the 6-month intervention period at the 16 sites to assess the effects of the ACP service delivered by these agents. We will also collect interview and survey data from patients and families who participate, and healthcare professionals who are involved in this service to capture their experiences with ACP.
Discussion: This study will potentially contribute to better patient outcomes with their health care services. Completion of ACDs will allow patients to express their wishes for care and receive the care that they wish for, as well as ease their family from the burden of making difficult decisions. The study will contribute to development of a new best practice model to normalise ACP that is sustainable and transferable in the processes of: 1) initiation of conversation; 2) discussion of important issues; 3) documentation of the wishes; 4) storage of the documented wishes; and 5) access and execution of the documented wishes. The study will generate new evidence on the challenges, strategies and benefits of normalising ACP into practice in acute and community settings.

Origine : PubMed

Improving the waiting times within a hospice breathlessness service

SIME, Caroline ; MILLIGAN, Stuart ; DONAL ROONEY, Kevin
BMJ open quality, 2019, vol.8, n°2, 7 p.

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Thème : Soins. Cote : eD02.00

SOIN ; PATIENT ; PRISE EN CHARGE ; MALADIE CHRONIQUE ; QUALITE SOIN ; ROYAUME UNI

Background: Breathlessness, a common symptom in advanced disease, is a distressing, complex symptom that can profoundly affect the quality of one's life. Evidence suggests that specialist palliative care breathlessness intervention services can improve physical well-being, personal coping strategies and quality of life. In the UK, the use of quality improvement methods is well documented in the National Health Service. However, within the independent hospice sector there is a lack of published evidence of using such methods to improve service provision.
Aim: The aim of this project was to reduce the waiting time from referral to service commencement for a hospice breathlessness service by 40%-from a median of 19.5 to 11.5 working days.
Methods: Using a quality planning and systems thinking approach staff identified barriers and blockages in the current system and undertook plan-do-study-act cycles to test change ideas. The ideas tested included offering home visits to patients on long-term oxygen, using weekly team 'huddles', streamlining the internal referral process and reallocating staff resources.
Results: Using quality improvement methods enabled staff to proactively engage in positive changes to improve the service provided to people living with chronic breathlessness. Offering alternatives to morning appointments; using staff time more efficiently and introducing accurate data collection enabled staff to monitor waiting times in real time. The reduction achieved in the median waiting time from referral to service commencement exceeded the project aim.
Conclusions: This project demonstrates that quality improvement methodologies can be successfully used in a hospice setting to improve waiting times and meet the specific needs of people receiving specialist palliative care.

Origine : PubMed

Impacts of person-centred integrated chronic heart failure and palliative home care on pharmacological heart failure treatment - a substudy of a randomised trial

MARKGREN, Rickard ; BRANNSTROM, Margareta ; LUNDGREN, Claes ; BOMAN, Kurt
BMJ supportive and palliative care, 03/2019, vol.9, n°1, p. e10

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Thème : Médecine.

QUALITE VIE ; INSUFFISANCE CARDIAQUE ; PERSONNE AGEE ; SOIN DOMICILE ; HOSPITALISATION ; MALADIE CHRONIQUE ; MEDECINE FACTUELLE ; PHARMACOLOGIE

OBJECTIVE: Patients with chronic heart failure (CHF) may be insufficiently treated pharmacologically. Recently, we presented a person-centred integrated Palliative advanced homecaRE and heart FailurE caRe (PREFER) strategy and compared it with usual care (control). Patients managed according to PREFER had improved health-related quality of life and markedly reduced hospitalisations compared with the control group. We hypothesised that these improvements may have been partly due to better drug treatments within the PREFER strategy. Thus, our aim in this study was to explore the management of drug treatments in the PREFER group compared with the control group.
METHODS: Doses and numbers of drugs and the number of patients receiving the target doses based on current guidelines were measured and compared between the groups at the start and finish of the study.
RESULTS: The percentages of ACE inhibitors (ACEIs) or mineralocorticoid receptor antagonists (MRAs) increased, while loop diuretics decreased in the PREFER arm during the study, although the differences were not significant. Beta-receptor blockers (BBs) decreased somewhat in both groups. The number of patients treated with MRAs differed the most between groups, and increased from 10 (28%) to 15 (48%) in the PREFER arm compared with 13 (35%) vs 13 (39%) in the control group. The change in patients receiving full target doses (+8 vs. +1) of the ACEIs/angiotensin receptor blockers, BBs and MRAs were significantly higher (p=0009) in the PREFER arm than in the control arm.
CONCLUSIONS: Person-centred integrated care of patients with severe CHF was associated with increased evidence-based drug treatments, especially MRAs.
CLINICAL TRIAL NUMBER: NCT01304381.

Origine : PubMed

Advance care planning with chronically ill patients - a relational autonomy approach

KILLACKEY, Tieghan ; PETER, Elizabeth ; MACIVER, Jane ; MOHAMMED, Shan
Nursing ethics, 23/05/2019, Pagination inconnue

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Thème : Soins.

PLANIFICATION ; ANTICIPATION ; SOIN ; AUTONOMIE ; MALADIE CHRONIQUE

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process.

Origine : PubMed

Efficacy of motivational interviewing to enhance advance directive completion in Latinos with chronic illness - a randomized controlled trial

NEDJAT-HAIEM, Frances R. ; CADET, Tamara J. ; AMATYA, Anup ; THOMPSON, Beti ; MISHRA, Shiraz I.
The American journal of hospice and palliative care, 23/05/2019, Pagination inconnue

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Thème : Soins.

DIRECTIVE ANTICIPEE ; MALADIE CHRONIQUE ; ESSAI CONTROLE RANDOMISE ; CULTURE ; FIN VIE ; PERSONNE AGEE ; COMMUNICATION ; OUTIL

BACKGROUND: End-of-life (EOL) care for Latinos with chronic illness is a critically important problem. Latinos with chronic illness suffer worse health outcomes and poorer quality of care due to various issues occurring in care delivery systems. Latinos are less likely than non-Hispanic whites to prepare an advance directive (AD) for health-care decision-making that impacts treatment decisions for when EOL is near. Advance care planning (ACP) interventions tailored specifically for Latinos have rarely been implemented.
OBJECTIVE: The primary aim examines whether a motivational interviewing (MI) intervention increased rates of AD documentation among older Latinos. The secondary aim was to examine whether MI improved communication with providers and family members.
METHODS: We pilot tested a randomized controlled trial with older Latinos >50 years with one or more chronic illnesses, including cancer. Participants were randomly assigned to usual care (UC) receiving ACP education alone versus treatment (TX), which received ACP education, plus MI counseling including interactive decisional support, emotional support, and barrier navigation.
RESULTS: Results of logistic regression indicate TX group participants were significantly more likely to document an AD than UC, however were less ready to talk with health-care providers or family members. Those reporting navigational barriers for talking about dying is difficult showed a significant negative relationship for AD completion even with significant intervention effects.
CONCLUSION: When using MI to motivate individuals toward ACP EOL conversations other factors are important to consider. Further research is needed, especially among Latinos to understand best practices for ACP education and counseling for EOL care.

Origine : PubMed

End of life care for long-term care residents with dementia, chronic illness and cancer - prospective staff survey

BOYD, Michal ; FREY, Rosemary ; BALMER, Deborah ; ROBINSON, Jackie ; MCLEOD, Heather ; FOSTER, Susan ; SLARK, Julia ; GOTT, Merryn
BMC GERIATRICS, 22/05/2019, vol.19, n°1, p. 1-9

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Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : eD05.04

FIN VIE ; MAISON RETRAITE ; PERSONNE AGEE ; DEMENCE ; MALADIE CHRONIQUE ; CANCER ; SYMPTOME ; ANALYSE COMPARATIVE ; QUALITE SOIN

BACKGROUND: Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. The aim of this study was to compare symptoms before death in LTC for those with cancer, dementia or chronic illness.
METHODS: After-death prospective staff survey of resident deaths with random cluster sampling in 61 representative LTC facilities across New Zealand (3709 beds). Deaths (n = 286) were studied over 3 months in each facility. Standardised questionnaires - Symptom Management (SM-EOLD) and Comfort Assessment in End of life with Dementia (CAD-EOLD) - were administered to staff after the resident’s death.
RESULTS: Primary diagnoses at the time of death were dementia (49%), chronic illness (30%), cancer (17%), and dementia and cancer (4%). Residents with cancer had more community hospice involvement (30%) than those with chronic illness (12%) or dementia (5%). There was no difference in mean SM-EOLD in the last month of life by diagnosis (cancer 26.9 (8.6), dementia 26.5(8.2), chronic illness 26.9(8.6). Planned contrast analyses of individual items found people with dementia had more pain and those with cancer had less anxiety. There was no difference in mean CAD-EOLD scores in the week before death by diagnosis (total sample 33.7(SD 5.2), dementia 34.4(SD 5.2), chronic illness 33.0(SD 5.1), cancer 33.3(5.1)). Planned contrast analyses showed significantly more physical symptoms for those with dementia and chronic illness in the last month of life than those with cancer.
CONCLUSIONS: Overall, symptoms in the last week and month of life did not vary by diagnosis. However, sub-group planned contrast analyses found those with dementia and chronic illness experienced more physical distress during the last weeks and months of life than those with cancer. These results highlight the complex nature of LTC end of life care that requires an integrated gerontology/palliative care approach.

Origine : PubMed

A formative evaluation of patient and family caregiver perspectives on early palliative care in COPD across disease severity

IYER, Anand S. ; DIONNE-ODOM, J. Nicholas ; FORD, Stephanie M. ; CRUMP TIMS, Sheri L. ; SOCKWELL, Elizabeth D. ; IVANKOVA, Nataliya V. ; BROWN, Cynthia J. ; TUCKER, Rodney O. ; DRANSFIELD, Mark T. ; BAKITAS, Marie A.
Annals of the American Thoracic Society, 30/04/2019, Pagination inconnue

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Thème : Soins.

MALADIE CHRONIQUE ; MALADIE RESPIRATOIRE ; DEMARCHE PALLIATIVE ; BESOIN ; BESOIN FONDAMENTAL ; FAMILLE ; CONTROLE SYMPTOME ; EVALUATION

RATIONALE: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).
OBJECTIVES: To identify patient and family caregiver early palliative care needs across stages of COPD severity.
METHODS: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation study of patients with moderate to very severe COPD (FEV1/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life (QOL), anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages.
RESULTS: Patients (n=10) were a mean (±SD) age of 60.4±7.5 years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n=10) were a mean age of 58.3±8.7 years, 40% African American, and 10% male. Overall, 30% (n=6) of participants had poor QOL, 45% (n=9) had moderate-severe anxiety symptoms, 25% (n=5) had moderate-severe depressive symptoms, and 40% (n=8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared to those with moderate-severe COPD.
CONCLUSIONS: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage disease. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.

Origine : PubMed

Dignity therapy as an aid to coping for COPD patients at their end-of-life stage

BROZEK, Beata ; FOPKA-KOWALCZYK, Malgorzata ; LABUS-CENTEK, Marta ; DAMPS-KONSTANSKA, Iwona ; RATAJSKA, Anna ; JASSEM, Ewa ; LARKIN, Philip J. ; KRAJNIK, Malgorzata
Advances in respiratory medicine, 06/05/2019, p. 1-30

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Thème : Psychologie, psychanalyse. Cote : eD06.01.00

DIGNITE ; COPING ; MALADIE CHRONIQUE ; MALADIE RESPIRATOIRE ; FIN VIE ; SOUTIEN PSYCHOLOGIQUE ; SPIRITUALITE

Background: Observations indicate that struggling with a burden of an incurable disease such as advanced chronic obstructive pulmonary disease (COPD) may result in the weakening of an individual sense of dignity, and be a source of spiritual suffering. Clinicians providing respiratory care to patients should be open to their spiritual needs, in the belief it may improve coping with the end-of-life COPD.
Objectives: The study aimed to assess overall feasibility and potential benefits of Dignity Therapy (DT) in patients with advanced COPD. Methods: Patients with severe COPD, in whom a DT intervention was implemented according to the protocol established by Chochinov et al were included into the study. An self-designed questionnaire was applied to assess the patients' satisfaction after intervention. Subsequently, the patients' statements were allocated to specific problem categories, corresponding to the spiritual suffering concerns, as structured by Groves and Klauser.
Results: DT was completed in 10 patients, with no unexpected side effects. Satisfaction Questionnaire showed a positive effect of DT on the patient' well-being (3.9 on a 5-point Likert scale). The analyses of the patients' original statements enabled an effective identification of the spiritual suffering and spiritual resources and faced by COPD patients.
Conclusion: DT is an intervention well received by COPD patients, which may help them in recognising and fulfilling their spiritual needs in the last phase of their life. Information acquired on the patients' resources and spiritual challenges may help clinicians improve their care, especially with regard to supporting their patients at the end-of-life stage.

Origine : PubMed

The influence of multimorbidity on health care utilization at the end of life for patients with chronic conditions

WAGNER, Elizabeth ; PATRICK, Donald L. ; KHANDELWAL, Nita ; BRUMBACK, Lyndia ; STARKS, Helene ; FAUSTO, James ; DUNLAP, Benjamin S. ; LOBER, William ; SIBLEY, James ; LOGGERS, Elizabeth T. ; CURTIS, J. Randall ; ENGELBERG, Ruth A.
JOURNAL OF PALLIATIVE MEDICINE, 09/04/2019, Pagination inconnue

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Thème : Age de la vie, situations spécifiques liées à la fin de vie.

MALADIE CHRONIQUE ; FIN VIE ; HOSPITALISATION ; ETATS-UNIS ; ADMISSION ; SERVICE URGENCES ; SOIN INTENSIF

OBJECTIVE: To evaluate the association between the number of chronic conditions and hospital utilization at the end of life.
BACKGROUND: An understanding of the association of multimorbidity with health care utilization at the end of life may inform interventions to improve quality of care for these patients.
METHODS: A mortality follow-back analysis using Washington State death records and electronic health records. Subject included patients in the UW Medicine system who had at least one chronic condition and died between 2010 and 2015. Utilization was measured by inpatient admissions, emergency department use, and intensive care unit (ICU) admissions in the last 30 days of life.
RESULTS: For all utilization types, patients with three or more chronic conditions (n = 5124) had significantly higher utilization (p < 0.001) in the last 30 days of life than those with two (n = 5775) or one condition (n = 11,169). Comparing 3 versus 2 versus 1 conditions, the following percentages of patients had each type of utilization: inpatient admissions (37% vs. 28% vs. 19%), ED admissions (5% vs. 4% vs. 2%), and ICU care (28% vs. 20% vs. 12%).
DISCUSSION: Multimorbidity was associated with greater health care utilization at the end of life among patients representing a range of ages and covered by diverse insurers.

Origine : PubMed

Disparities in inpatient intensity of end-of-life care for complex chronic conditions

JOHNSTON, Emily E. ; BOGETZ, Jori ; SAYNINA, Olga ; CHAMBERLAIN, Lisa J. ; BHATIA, Smita ; SANDERS, Lee
Pediatrics, 10/04/2019, vol.143, n°5, Pagination inconnue

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Thème : Age de la vie, situations spécifiques liées à la fin de vie.

ENFANT ; MALADIE CHRONIQUE ; ETATS-UNIS ; SOIN ; FIN VIE ; ETUDE RETROSPECTIVE

BACKGROUND: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care.
METHODS: We performed a retrospective population-based analysis using a California State administrative database of children aged 1 to 21 years with a CCC who died of disease-related causes between 2000 and 2013. Rates of and sociodemographic and clinical factors associated with previously defined inpatient end-of-life intensity indicators were determined. The intensity indicators included: (1) hospital death, (2) receipt of a medically intense intervention within 30 days of death (ICU admission, cardiopulmonary resuscitation, hemodialysis, and/or intubation), and (3) having >=2 intensity markers (including hospital death).
RESULTS: There were 8654 children in the study population with a mean death age of 11.8 years (SD 6.8). The 3 most common CCC categories were neuromuscular (47%), malignancy (43%), and cardiovascular (42%). Sixty-six percent of the children died in the hospital, 36% had a medically intense intervention in the last 30 days of life, and 35% had >=2 intensity markers. Living in a low-income neighborhood was associated with increased odds of hospital death, a medically intense intervention, and >=2 intensity markers. Hispanic and "other" race and/or ethnicity were associated with hospital death and >=2 intensity markers. Age 15 to 21 years was associated with hospital death, a medically intense intervention, and >=2 intensity markers.
CONCLUSIONS: Sociodemographic disparities in the intensity of end-of-life care for children with CCCs raise concerns about whether all children are receiving high-quality and goal-concordant end-of-life care.

Origine : PubMed

Outcome of frail do-not-intubate subjects with end-stage chronic respiratory failure and their opinion of noninvasive ventilation to reverse hypercapnic coma

LEMYZE, Malcolm ; DE PALLEJA, Gaëel ; GUIOT, Aurélie ; BURY, Quentin ; JONARD, Marie ; GRANIER, Maxime ; THEVENIN, Didier ; MALLAT, Jihad
Respiratory care, 19/03/2019, Pagination inconnue

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Thème : Ethique et déontologie.

INSUFFISANCE RESPIRATOIRE ; MALADIE CHRONIQUE ; VENTILATION ARTIFICIELLE ; SERVICE URGENCES ; COMA ; VULNERABILITE ; FIN VIE ; ETHIQUE SOIN ; ETUDE LONGITUDINALE ; FRANCE

BACKGROUND: The use of noninvasive ventilation (NIV) in the emergency setting to reverse hypercapnic coma in frail patients with end-stage chronic respiratory failure and do-not-intubate orders remains a questionable issue given the poor outcome of this vulnerable population. We aimed to answer this issue by assessing not only subjects' outcome with NIV but also subjects' point of view regarding NIV for this indication.
METHODS: A prospective observational case-control study was conducted in 3 French tertiary care hospitals during a 2-y period. Forty-three individuals who were comatose (with pH < 7.25 and PaCO2 > 100 mm Hg at admission) were compared with 43 subjects who were not comatose and who were treated with NIV for acute hypercapnic respiratory failure. NIV was applied by using the same protocol in both groups. They all had a do-not-intubate order and were considered vulnerable individuals with end-stage chronic respiratory failure according to well-validated scores.
RESULTS: NIV yielded similar outcomes in the 2 groups regarding in-hospital mortality (n = 12 [28%] vs n = 12 [28%] in the noncomatose controls, P > .99) and 6-month survival (n = 28 [65%] vs n = 22 [51%] in the noncomatose controls, P = .31). Despite poor quality of life scores (21.5 ± 10 vs 31 ± 6 in the awakened controls, P = .056) as assessed by using the VQ11 questionnaire 6 months to 1 y after hospital discharge, a large majority of the survivors (n = 23 [85%]) would be willing to receive NIV again if a new episode of acute hypercapnic respiratory failure occurs.
CONCLUSION: In the frailest subjects with supposed end-stage chronic respiratory failure that justifies treatment limitation decisions, it is worth trying NIV when acute hypercapnic respiratory failure occurs, even in the case of extreme respiratory acidosis with hypercapnic coma at admission.

Origine : PubMed

Effect of erythropoiesis-stimulating agent therapy in patients receiving palliative care of chronic kidney disease

CHOW, Kai Ming ; SZETO, Cheuk Chun ; CHOY, Agnes Shin Man ; NG, Jack Kit Chung ; MOK, Alice Ka Wai ; LEUNG, Chi Bon ; LI, Philip Kam Tao
The American journal of hospice and palliative care, 07/03/2019, Pagination inconnue

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Thème : Médecine.

DEMARCHE PALLIATIVE ; UROLOGIE ; MALADIE CHRONIQUE ; DIALYSE ; ETUDE RETROSPECTIVE ; TRANSFUSION SANGUINE ; HOSPITALISATION

BACKGROUND: Despite the increasing use of erythropoiesis-stimulating agent (ESA) in patients receiving dialysis, few studies have examined the benefits of ESA for patients with chronic kidney disease receiving palliative care.
OBJECTIVE: We designed a retrospective observational study to evaluate the effect of ESA in treating anemia of renal disease among adult patients receiving palliative care instead of dialysis. The primary objective was to assess whether ESA can reduce the transfusion burden and hospitalization.
RESULTS: Thirty-nine patients receiving ESA were matched with a control group of 39 patients without ESA. Their mean age and glomerular filtration rates were 76.7 (10.2) years and 11.6 (5.7) mL/min/1.73 m2, respectively. Baseline hemoglobin levels were comparable in the ESA and control groups; their corresponding values were 10.2 (1.5) and 10.1 (1.4) g/dL. During 1-year observation period, 34 units of red cell transfusion occurred in patients receiving ESA, whereas 128 units of red cell were transfused to patients in control group. Patients in the control group had higher transfusion rate (incidence rate ratio [IRR]: 3.63; 95% confidence interval [CI]: 2.49-5.31; P < .00001) and higher admission rates (IRR: 2.34; 95% CI: 1.80-3.03; P < .000001) than the ESA group even after adjustment for comorbidities.
CONCLUSIONS: High disease burden of palliative care among patients with stage 4 to 5 chronic kidney disease was reflected by transfusion requirement and hospitalization rates, both of which were shown to be significantly ameliorated by ESA treatment.

Origine : PubMed

The provision of palliative care for noncancer patients with advanced disease - equity does matter

HEYDARI, Abbas ; SHARIFI, Hassan ; BAGHERI MOGHADDAM, Ahmad
The American journal of hospice and palliative care, 05/03/2019, Pagination inconnue

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Thème : Soins.

DEMARCHE PALLIATIVE ; MALADIE GRAVE ; MALADIE CHRONIQUE

According to the World Health Organization, the main mission of palliative care is to optimize the quality of life of patients with serious chronic disease, as well as their caregivers, by providing biopsychosociospiritual care. However, historically, the primary focus of palliative care is on providing care only for cancer diseases. Based on the current literature, it is assumed that palliative care is not provided for many chronic diseases on a regular basis and in many cases, a clinical guideline does not exist for providing palliative care.

Origine : PubMed

Correlates of advance directive treatment preferences among community-dwelling older people with chronic diseases

KIM, JinShil ; HEO, Seongkum ; HONG, Sun Woo ; SHIM, JaeLan ; LEE, Jung-Ah
International journal of older people nursing, 01/03/2019, Pagination inconnue

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Thème : Age de la vie, situations spécifiques liées à la fin de vie.

DIRECTIVE ANTICIPEE ; PERSONNE AGEE ; MALADIE CHRONIQUE ; COREE ; CONNAISSANCE ; ATTITUDE ; PREFERENCE

BACKGROUND: Concerns over the creation of advance directives (ADs) and the factors associated with treatment directive decisions among Korean community-dwelling older people with chronic diseases have rarely been addressed.
OBJECTIVES: This study aimed to examine knowledge, attitudes and barriers/benefits regarding ADs and their associations with AD treatment preferences among chronically ill, low-income, community-dwelling older people.
METHODS: Using a descriptive, correlational design, older people who were recipients of home visiting service for chronic disease management participated in this study. Home visiting nurses collected data on knowledge, attitudes and perceived barriers/benefits and treatment directives using questionnaires during home visits.
RESULTS: Older people (N = 112, mean age = 74.9 years, women = 83.9%) who had chronic diseases such as hypertension (56.3%), diabetes mellitus (40.2%) and cardiovascular disease/stroke (22.3%) participated. Approximately half of the participants preferred hospice care (54.5%), while a few of them preferred aggressive treatments: cardiopulmonary resuscitation (CPR) (14.3%), ventilation support (9.8%) and haemodialysis (8.9%). Being married was associated with the likelihood of preferring CPR (odds ratio [OR] = 11.79) and ventilation support (OR = 9.99), higher education with CPR (OR = 1.23) and haemodialysis (OR = 1.16), and having a cardiovascular disease (CVD)/stroke with CPR (OR = 6.46) and hospice care (OR = 3.06). Among the modifiable factors, greater perceived barriers increased the likelihood of CPR preference (OR = 1.12) but decreased the likelihood of hospice care preference (OR = 0.96). Greater perceived benefits decreased the likelihood of CPR preference (OR = 0.81) and ventilation support (OR = 0.89), and AD knowledge decreased the likelihood of haemodialysis preference (OR = 0.23).
CONCLUSION: The multidimensional factors were differently associated with each of the AD treatment preferences. Modifiable factors, including perceived barriers and benefits and knowledge, should be improved to help low-income, community-dwelling older people select adequate AD treatment preferences.
IMPLICATIONS FOR PRACTICE: Additional information regarding AD treatments and some modifiable and non-modifiable correlates can be integrated into primary and palliative/supportive care in public health. The current home visitation service may also benefit from incorporating AD discussions while extending the service to embrace AD issues in addition to disease management.

Origine : PubMed

Experiences of symptoms and health service preferences among older people living with chronic diseases during the last year of life

PUNGCHOMPOO, Wanicha ; SUWAN, Panudda ; KUNAPUN, Sukonta ; PUNGCHOMPO, Sirirat ; TUNGPUNKOM, Patraporn
International Journal of Palliative Nursing, 02/03/2019, vol.25, n°3, p. 129-141

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Thème : Age de la vie, situations spécifiques liées à la fin de vie.

SYMPTOME ; PREFERENCE ; PERSONNE AGEE ; MALADIE CHRONIQUE ; FIN VIE ; THAILANDE ; QUALITE VIE ; ACCES SOIN ; DEMARCHE PALLIATIVE ; BESOIN

BACKGROUND: There is limited understanding of the symptoms that older people living with cancer, chronic obstructive pulmonary disease and chronic kidney disease experience during the last year of life in Thailand, in addition to their health service preferences.
AIMS: To survey the symptom experiences and health service preferences at the end of life of older people with chronic illnesses from the perspective of bereaved carers.
METHODS: The study used a retrospective post-bereavement approach to collect quantitative data. Purposive sampling was used to select 76 bereaved relatives of older people living with chronic illnesses who had died in the previous 5 to10 months. Telephone interviews and a translated version of the Views of Informal Carers-Evaluation Services (VOICES) questionnaire were conducted. Data were analysed using the statistical package SPSS version 17.
FINDINGS: The overall quality of care received by older people living with chronic diseases during the last three months of life was described as 'good' (36%). However, in comparing the quality of care from different settings, most of the subjects (63%) thought that the quality of care at home should be rated as 'poor'. During the last twelve months, 35% of the respondents rated pain and poor appetite as the main symptoms, while 25% described experiencing 'worry' related to being at the end of life. The severity of many symptoms increased during the last three months of life; 21% of carers recommended that pain caused the most suffering to their relatives at 'all times', when compared with other symptoms of end of life. Around 21-35% reported that their relatives 'sometimes' experienced worry, low mood, breathlessness and oedema. During the last three days of life, it was reported by 97% of respondents that their relatives spent all of their time in hospital, and no respondents reported that their relatives had died at home.
CONCLUSION: The study indicates that older people living with chronic diseases in Thailand are less likely to access specialist palliative care and are more likely to have poor symptom control at the end of life. It indicates that health services may not be meeting patients' needs and that there was clearly insufficient healthcare provision at home for older people to help them to manage their symptoms such as pain and breathlessness.

Origine : PubMed

Assigned nurses and a professional relationship - a qualitative study of COPD patients' perspective on a new palliative outpatient structure named CAPTAIN

BOVE, D. G. ; JELLINGTON, M. O. ; LAVESEN, M. ; MARSÅ, K. ; HERLING, S. F.
BMC palliative care, 02/03/2019, vol.18, n°1, p. 1-9

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Thème : Soins. Cote : eD02.03.00

RECHERCHE QUALITATIVE ; MALADIE CHRONIQUE ; MALADIE RESPIRATOIRE ; RELATION INTERPROFESSIONNELLE ; INFIRMIERE ; DEMARCHE PALLIATIVE

BACKGROUND: Little is known of how to organize non-malign palliative care, and existing knowledge show that patients with COPD live with unmet palliative needs and low quality of life. With the intent to improve palliative care for patients with COPD, we changed the structure of our outpatient clinic from routine visits by a pulmonary specialist to a structure where each patient was assigned a nurse, offered annual advance care planning dialogues, and ad hoc pulmonary specialist visits. The aim of this study was to explore COPD patients' experiences with a new and altered palliative organization.
METHODS: The design was interpretive description as described by Thorne. We conducted ten semi-structured interviews with patients with severe COPD from January 2017 to December 2017.
RESULTS: Patients described how the professional relationship and the availability of their nurse was considered as the most important and positive change. It made the patients feel safe, in control, and subsequently influenced their ability to self-manage their life and prevent being hospitalized. The patients did not emphasize the advanced care planning dialogues as something special or troublesome.
CONCLUSION: We showed that it is relevant and meaningful to establish a structure that supports professional relationships between patient, nurse and physician based on patients needs. The new way of structuring the outpatient care was highly appreciated by COPD patients and made them feel safe which brought confidence in self-management abilities.

Origine : PubMed

A palliative approach is adopted for many patients dying in hospital with chronic obstructive pulmonary disease

SMALLWOOD, Natasha ; ROSS, Lauren ; TAVERNER, John ; JOHN, Jenny ; BAISCH, Andreas ; IRVING, Louis ; PHILIP, Jennifer
COPD, 10/2018, vol.15, n°5, p. 503-511

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Thème : Médecine.

DEMARCHE PALLIATIVE ; HOPITAL ; MALADIE CHRONIQUE ; MALADIE RESPIRATOIRE ; AUSTRALIE ; TRAJECTOIRE MALADIE

Severe chronic breathlessness in advanced chronic obstructive pulmonary disease (COPD) is undertreated and few patients access specialist palliative care in the years before death. This study aimed to determine if symptom palliation or a palliative approach were delivered during the final hospital admission in which death occurred. Retrospective medical record audits were completed at two Australian hospitals, with all patients who died from COPD over 12 years between 1 January 2004 and 31 December 2015 included. Of 343 patients included, 217 (63%) were male with median age 79 years (IQR 71.4–85.0). Median respiratory function: FEV1 0.80L (42% predicted), FVC 2.02L (73% predicted) and DLco 9 (42% predicted). 164 (48%) used domiciliary oxygen. Sixty (18%) patients accessed specialist palliative care and 17 (5%) wrote an advance directive prior to the final admission. In the final admission, 252 (74%) patients had their goal of care changed to aim for comfort (palliation) and 99 (29%) were referred to specialist palliative care. Two hundred and eighty-six (83%) patients received opioids and 226 (66%) received benzodiazepines, within 1 or 2 days respectively after admission to palliate symptoms. Median starting and final opioid doses were 10 mg (IQR = 5–20) and 20 mg (IQR = 7–45) oral morphine equivalent/24 h. Hospital site and year of admission were significantly associated with palliative care provision. Respiratory and general physicians provided a palliative approach to the majority of COPD patients during their terminal admission, however, few patients were referred to specialist palliative care. Similarly, there were missed opportunities to offer symptom palliation and a palliative approach in the years before death.

Origine : PubMed

Early integrated palliative care in chronic heart failure and chronic obstructive pulmonary disease - protocol of a feasibility before-after intervention study

SIOUTA, N. ; HEYLEN, A. ; AERTGEERTS, B. ; CLEMENT, P. ; VAN CLEEMPUT, J. ; JANSSENS, W. ; MENTEN, J.
Pilot and feasibility studies, 2019, vol.5, p. 1-9

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Thème : Médecine. Cote : eD03.03

DEMARCHE PALLIATIVE ; MALADIE CHRONIQUE ; INSUFFISANCE CARDIAQUE ; MALADIE RESPIRATOIRE ; ACCES SOIN ; PROTOCOLE SOIN ; SERVICE SOIN AIGU ; SATISFACTION ; QUALITE VIE ; CONTROLE SYMPTOME ; BELGIQUE ; QUALITE SOIN

Background: Patients with chronic heart failure (CHF) and patients with chronic obstructive pulmonary disease (COPD) are amenable to integrated palliative care (PC); however, despite the recommendation by various healthcare organizations, these patients have limited access to integrated PC services. In this study, we present the protocol of a feasibility prospective study that aims to explore if an "early integrated PC" intervention can be performed in an acute setting (cardiology and pulmonology wards) and whether it will have an effect on (i) the satisfaction of care and (ii) the quality of life and the level of symptom control of CHF/COPD patients and their informal caregivers.
Methods: A before-after intervention study with three phases, (i) baseline phase where the control group receives standard care, (ii) training phase where the personnel is trained on the application of the intervention, and (iii) intervention phase where the intervention is applied, will be carried out in cardiology and pulmonology wards in the University Hospital Leuven for patients with advanced CHF/COPD and their informal caregivers. Eligible patients (both control and intervention group) and their informal caregivers will be asked to complete the Palliative Outcome Scale, the CANHELP Lite, and the Advance Care Planning Questionnaire at the inclusion moment and 3 months after hospital discharge.
Discussion: The present study will assess the feasibility of carrying out PC-focused studies in acute wards for CHF/COPD patients and draw lessons for the further integration of PC alongside standard treatment. Further, it will measure the quality of life and quality of care of patients and thus shed light on the care needs of this population. Finally, it will evaluate the potential efficacy of the "early integrated palliative care" by comparing against existing practices..

Origine : PubMed

End-of-life care for patients with advanced lung cancer and chronic obstructive pulmonary disease - survey among Polish pulmonologists

BARCZYK, Adam ; CURROW, David ; JASSEM, Ewa ; BROZEK, Beata ; PIERZCHALA, Wladyslaw ; KRAJNIK, Malgorzata ; DAMPS-KONSTANSKA, Iwona
Polish archives of internal medicine, 05/03/2019, p. 1-38

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Thème : Médecine. Cote : eD03.03

FIN VIE ; CANCER RESPIRATOIRE ; MALADIE RESPIRATOIRE ; MALADIE CHRONIQUE ; POLOGNE ; DEMARCHE PALLIATIVE ; PRISE EN CHARGE

INTRODUCTION: There is evidence that people with non-malignant disease receive poorer end-of-life (EOL) care compared to people with cancer. OBJECTIVES To assess the selected aspects of symptomatic treatment and communication between physicians and patients diagnosed with either advanced chronic obstructive pulmonary disease (COPD) or lung cancer.
METHODS: A questionnaire survey was conducted on-line among members of Polish Respiratory Society (PRS).
RESULTS: Correctly filled-in questionnaires were returned by 174 respondents (27.2% of those proved to be contacted by e-mail). In COPD, 32% of respondents always/often used opioids in chronic breathlessness and 18.3% always/often referred patients to palliative care (PC) specialist. Nearly 80% of respondents regarded bedside talks with people with COPD on EOL issues as essential, although only 20% would always/often initiate them. In people with lung cancer, opioids were routinely used for relief of chronic breathlessness by 80.0% of physicians; 81.7% referred patients to PC. More than half of the respondents always/often discussed EOL issues with only the patient's caregivers/relatives. Younger physicians, those caring for higher numbers of people with lung cancer and those who were better acquainted with PRS recommendations for PC in chronic lung diseases seemed to provide better EOL care for COPD patients.
CONCLUSIONS: People with COPD were seldom treated with opioids to relieve chronic breathlessness, or referred to PC consultation compared to people with lung cancer. Discussing the EOL issues with a patient was generally found challenging by physicians, and most often pursued with caregivers instead. COPD recommendations on PC may help to provide better EOL care by pulmonologists.

Origine : PubMed

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CANCER DEMARCHE PALLIATIVE ENFANT ETATS-UNIS FAMILLE FIN VIE MALADIE CHRONIQUE MALADIE GRAVE MALADIE RESPIRATOIRE PATIENT PERSONNE AGEE PHASE TERMINALE PLANIFICATION QUALITE VIE SOIN

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