A Joint Cardiology and Palliative Care Clinic for End Stage Cardiac Patients with a Novel Approach for Improving Quality of Care Across the Primary and Secondary Care Interface

IntroductionEmergency department (ED)-initiated palliative care has been shown to improve patient-centred outcomes in older adults with serious, life-limiting illnesses. However, the optimal modality for providing such interventions is unknown. This study aims to compare nurse-led telephonic case management to specialty outpatient palliative care for older adults with serious, life-limiting illness on: (1) quality of life in patients; (2) healthcare utilisation; (3) loneliness and symptom burden and (4) caregiver strain, caregiver quality of life and bereavement.Methods and analysisThis is a protocol for a pragmatic, multicentre, parallel, two-arm randomised controlled trial in ED patients comparing two established models of palliative care: nurse-led telephonic case management and specialty, outpatient palliative care. We will enrol 1350 patients aged 50+ years and 675 of their caregivers across nine EDs. Eligible patients: (1) have advanced cancer (metastatic solid tumour) or end-stage organ failure (New York Heart Association class III or IV heart failure, end-stage renal disease with glomerular filtration rate <15 mL/min/m2, or global initiative for chronic obstructive lung disease stage III, IV or oxygen-dependent chronic obstructive pulmonary disease); (2) speak English; (3) are scheduled for ED discharge or observation status; (4) reside locally; (5) have a working telephone and (6) are insured. Patients will be excluded if they: (1) have dementia; (2) have received hospice care or two or more palliative care visits in the last 6 months or (3) reside in a long-term care facility. We will use patient-level block randomisation, stratified by ED site and disease. Effectiveness will be compared by measuring the impact of each intervention on the specified outcomes. The primary outcome will measure change in patient quality of life.Ethics and disseminationInstitutional Review Board approval was obtained at all study sites. Trial results will be submitted for publication in a peer-reviewed journal.Trial registration numberNCT03325985; Pre-results.

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Hospital end-of-life care: families’ free-text notes

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-00239 ◽

2020 ◽

pp. bmjspcare-2020-00239

Author(s):

Sandra Kurkowski ◽

Johannes Radon ◽

Annika R Vogt ◽

Martin Weber ◽

Stephanie Stiel ◽

...

Keyword(s):

Palliative Care ◽

Quality Of Care ◽

End Of Life ◽

End Of Life Care ◽

Qualitative Content Analysis ◽

Free Text ◽

Life Care ◽

Quality Aspects ◽

Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

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Quality of care in end-stage renal disease: the importance of comparing 'apples with apples'

Nephrology Dialysis Transplantation ◽

10.1093/ndt/gfm876 ◽

2007 ◽

Vol 23 (4) ◽

pp. 1116-1116 ◽

Cited By ~ 7

Author(s):

K. J. Jager ◽

C. Zoccali

Keyword(s):

Quality Of Care ◽

Renal Disease ◽

End Stage Renal Disease ◽

Stage Renal Disease ◽

End Stage

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PENGEMBANGAN KAPASITAS PEREMPUAN BAGI IBU-IBU RELAWAN PROGRAM PALIATIF DI DESA KAMBINGAN DAN DESA KREMBUNG, KECAMATAN CERME, KABUPATEN GRESIK

Jurnal Layanan Masyarakat (Journal of Public Services) ◽

10.20473/jlm.v4i1.2020.189-201 ◽

2020 ◽

Vol 4 (1) ◽

pp. 189

Author(s):

Sulikah Asmorowati ◽

Inge Dhamanty

Keyword(s):

Palliative Care ◽

High Rate ◽

World Health ◽

Target Area ◽

Target Groups ◽

Community Project ◽

Health Organization ◽

End Stage

The high rate of deaths caused by serious illnesses has led the World Health Organization (WHO) to recommend palliative care that is considered to be able to improve the quality of patient’s live Palliative care or service is service for patients with serious illnesses, such as cancer (stadium or end-stage). In this activity, however, palliative care and service is extended so that it includes diseases that are not contagious but deadly (thus, contributed significantly to mortality rate), including such illnesses as diabetes, high-blood pressure, cholesterol, stroke and other similar illnesses. These illnesses are now increasingly being suffered by and become the major cause of death (caused by illnesses) amongst Indonesians. In order to increase the availability of palliative services in the target area, this community project provides training and assistance to develop women’s capacity in the villages of Kambingan and Ngembung, Cerme, Gresik, so that they are ready to volunteers for palliative care and service in their respective communities. The projects were conducted by providing material through lectures, and modules; followed by assistance to form a team of palliative case and service. At the end, this project resulted in the increasing understanding, and capacity of women (and mothers or PKK member), as the target groups about palliative care and services. In turn, the women were then ready to become volunteers for palliative care and program.abstrakTingginya tingkat kematian akibat penyakit serius membuat WHO menyarankan untuk melakukan perawatan paliatif yang dianggap dapat meningkatkan kualitas hidup pasien. Program atau layanan paliatif adalah pelayanan kepada pasien dengan penyakit berat, yaitu kanker (stadium akhir). Dalam kegiatan pengabdian masyarakat (pengmas) ini, layanan paliatif diperluas sehingga meliputi pula penyakit-penyakit yang tidak menular namun mematikan, seperti penyakit diabates, darah tinggi, kolesterol, stroke dan sejenisnya yang dewasa ini semakin banyak di derita masyarakat Indonesia. Kegiatan pengmas ini memberikan pelatihan dan pendampingan untuk mengembangkan kapasitas ibu-ibu tim penggerak dan anggota PKK di Desa Kambingan dan Desa Ngembung, Kecamatan Cerme, Kabupaten Gresik agar siap untuk menjadi relawan program paliatif di lingkungan masyarakat masing-masing. Metode yang digunakan dalam kegiatan ini adalah dengan pemberian materi melalui ceramah, pemberian modul, serta pendampingan pembentukan tim paliatif sebagai follow-up kegiatan. Hasil yang dicapai dari kegiatan pengabdian masyarakat ini adalah meningkatnya pemahaman masyarakat khususnya ibu-ibu tentang layanan paliatif, serta meningkatnya kapasitas mereka,sehingga siap menjadi relawan program paliatif.

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Comparison of effects of medicinal cannabis or standard palliative care on quality of life of patients with cholangiocarcinoma in Northeast Thailand

F1000Research ◽

10.12688/f1000research.75060.1 ◽

2022 ◽

Vol 11 ◽

pp. 20

Author(s):

Narisara Phansila ◽

Chaiyasit Sittiwet ◽

Ranee Wongkongdech

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Rank Test ◽

Northeast Thailand ◽

Care Clinic ◽

Early Access ◽

Signed Rank Test ◽

Medicinal Cannabis ◽

Pre Treatment

Background: Cholangiocarcinoma (CCA) has a poor prognosis and is a major cause of mortality and suffering in Thailand’s Northeastern (Isaan) Region. Methods: This prospective cohort study aimed to compare the health-related quality of life (HRQoL) among 72 newly diagnosed CCA patients; 42 patients who received cannabis treatment (CT) and 30 patients who received a standard palliative care treatment (ST). The study was carried out between 1st September 2019 to 31st October 2020. Data were collected from patients from oncology clinics of six hospitals in five provinces of northeast Thailand. The HRQoL was measured at baseline, and at 2 and 4 months after diagnosis by the European Organisation for Research and Treatment of Cancer (EORTC) Core Quality of Life questionnaires QLQ-C30, and QLQ-BIL21. The Mann-Whitney U-test was performed to compare quality of life scores between the two patient groups and Wilcoxon signed rank test was performed to compare within groups QoL scores at pre-treatment, and 2 and 4 month follow-ups. Results: Global health status and functional scales, for both groups were high at pre-treatment. At 2 and 4 month follow-up, CT group patients had consistent statistically significantly better Palliative Performance Scale (PPS), and QoL scores, and many symptom scores than the ST group. Conclusions: Medicinal cannabis may increase QoL for advanced CCA patients. Our findings support the importance of early access to palliative cannabis care clinic before the terminal and acceleration phase close to death.

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Implementing a patient-centred outcome measure in daily routine in a specialist palliative care inpatient hospital unit: An observational study

Palliative Medicine ◽

10.1177/0269216316655349 ◽

2016 ◽

Vol 31 (3) ◽

pp. 275-282 ◽

Cited By ~ 5

Author(s):

Alze Pereira dos Santos Tavares ◽

Carolina Paparelli ◽

Carolina Sassaki Kishimoto ◽

Silvia Avo Cortizo ◽

Karen Ebina ◽

...

Keyword(s):

Palliative Care ◽

Quality Of Care ◽

Missing Data ◽

Outcome Measure ◽

Symptom Control ◽

Daily Practice ◽

Daily Routine ◽

Palliative Care Outcome Scale ◽

Care Outcome

Background: Gathering clinical evidence data on patients’ palliative care needs is paramount to identify changes in outcomes over time and maintaining on-going quality improvement. Implementation of patient-centred outcome measures has been widely recommended. The routine use of these instruments in daily practice is challenging and not widespread. Aim: To implement a patient-centred outcome measure in daily practice and fulfil one quality indicator: improve pain during the 72 h after admission, in at least 75% of patients. Design: An observational prospective study. The Palliative care Outcome Scale was used at admission (T0), third day (T1) and weekly. Setting/participants: Hospital palliative care unit with 17 individual rooms. All patients admitted to the unit were included in the study. Results: Preliminary results ( N = 84) revealed inconsistent and missing data (14%). Symptoms were sub-optimally controlled by T1. Processes changed, and only a team member could apply Palliative care Outcome Scale. Doctors were encouraged to grasp the meaning of Palliative care Outcome Scale results for each patient. The post-pilot included 317 patients. No missing data occurred. There was an improvement in most items between T0 and T1: ‘pain’ and ‘other symptoms’ presented statistical significant differences ( p < 0.05). Conclusion: Implementing a patient-centred outcome measure in a hospital palliative care service is feasible and improves quality of care. Controlling high pain at T0 improved (>80%) by T1. Results became more consistent and symptom control was improved overall. Patients are evaluated based on holistic domains by an interdisciplinary team and we have added a much needed measure to help guide improvement of the quality of care provided.

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Quality of Care and Satisfaction With Care on Palliative Care Units

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2015.10.006 ◽

2016 ◽

Vol 51 (2) ◽

pp. 184-192 ◽

Cited By ~ 21

Author(s):

Kirsten Wentlandt ◽

Dori Seccareccia ◽

Nanor Kevork ◽

Kevin Workentin ◽

Susan Blacker ◽

...

Keyword(s):

Palliative Care ◽

Quality Of Care ◽

Satisfaction With Care ◽

Palliative Care Units

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Palliative Care in End-Stage Neurological Disease

Hospice and Palliative Medicine and Supportive Care Flashcards ◽

10.1093/med/9780190633066.003.0036 ◽

2018 ◽

Author(s):

Tobias Walbert ◽

Joel Phillips

Keyword(s):

Parkinson’S Disease ◽

Palliative Care ◽

Parkinson's Disease ◽

Symptom Management ◽

Neurological Diseases ◽

The United States ◽

Pain Syndromes ◽

End Stage ◽

Chronic Course

Neurological disorders are among the leading causes of morbidity and death worldwide. Although stroke is the third leading cause of death, after heart disease and cancer, in the United States, other neurological diseases have a more chronic course that leads to protracted disability, morbidity, and death. Unfortunately, for many of these disorders, such as Parkinson’s disease, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS), no cure is currently available. Patients suffer from dysarthria, dysphagia, muscle spasm, bladder and bowel difficulties, pain syndromes, and fatigue. Adequate symptom management and palliative care have the potential to maintain good quality of life for patients for as long as possible and ease the burden on both caregivers and patients. This chapter outlines the principles of clinical symptom management for some of the most important neurological diseases, specifically ALS, stroke, MS, and Parkinson’s disease.

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